SpiroChicks

How do you know?

2011-10-21T11:28:00.000-07:00

posted by Lyme is real, a SpiroChicks contributor

How do you know a pediatric neurosurgeon loves his/her patients? When the dressings are cut away to reveal gauze cut in the shape of hearts!

Rewind to August. Two weeks before her ninth birthday, our daughter started having a rougher time. She had less patience, was easily agitated and had a more difficult time making eye contact. She noticed memory issues. School started and in her words, "Things that used to be easy are taking a lot longer and sometimes I can't even remember what to do."

Things like how to add or subtract.

We noticed a decline in fine motor skills, more confusion, increased cognitive difficulty, dizziness, queasiness, increased headaches, fatigue and falls.

A CAT scan provided the first clue, hydrocephalus in the third ventricle of the brain. An MRI revealed hydrocephalus in the third and lateral ventricles, a Chiari malformation and part of a syrinx in the spinal cord. An MRI of the spine revealed two syrinxes in the spinal cord. A pediatric neurosurgeon joined the team of amazing physicians spanning four children's hospitals who have helped her to be where she is today: endocrinologist, bone geneticist, infectious disease specialist, orthopedic surgeon, pediatric opthamologists, ENT, pulmonologist, pediatricians and now a neurosurgeon. Our daughter was born with cerebral Lyme disease. She was diagnosed three years ago, solving many of her medical mysteries, but leaving challenges still to be faced.

The neurosurgeon explained that the Chiari malformation or hydrocephalus triggered the remaining problems, but which came first? A chicken/egg scenario. Fortunately, early MRIs provided the answer. They were normal, ruling out the Chiari malformation as a birth defect. The hydrocephalus came first. One cause of hydrocephalus is an infection of the central nervous system. Chief suspect: Borrelia.

This week a V/P shunt was inserted into her brain. At the time of her surgery, her cerebrospinal pressure was extremely high. In the surgeon's words, "It was the real deal."

She has been through so much in her nine years and there have been countless instances where we have been in awe of her courage and determination. Other than a few tears in the recovery room, she hasn't cried. Not during physical therapy, not when she tries to get up or roll over. Her one complaint, "I didn't realize it would hurt everywhere."

When she was tiny, she announced after getting a nightly shot of growth hormone, "I am one tough cookie in my wonderwear!"

She still is! Revealed once again when those heart shaped dressings came off today. Hearts meant to ease the hurt. A gift from a gifted surgeon.

Today, her hand has cautiously slipped behind her ear, carefully exploring where her hair has been shaved. A few tears. In three months, repeat MRIs will determine whether more surgery is necessary. We pray not, but know chronic Lyme is a marathon. There will be more challenges ahead. For now, it is enough to take comfort and gather strength from being home. It is time to rest and heal.

In closing, unforgettable words of encouragement from a nurse who shared our joy in her first steps after surgery to explore the Children's Garden. "Look at you, Little O!"

Hospital Tales

2011-10-17T13:20:00.000-07:00

By Candice, Spirochicks contributor
Originally posted on Infectiously Optimistic

Beep.....Beep......Beep......Beep.......

Thursday evening, a thin partitioning sheet separated my gurney from the gurney just a foot from mine. My neighboring hospital bed was empty upon my admittance to the Emergency Department, but a few hours into my stay, I watched the shadow of a new patient settle in, and listened to the worried voice of their accompanying loved one, intermittently interrupted by the intrusive sounds of inflating blood pressure cuffs and beeping machines. As the triage nurse brushed by the curtain separating us, the sheet rippled as it caught the air of the nurse’s brisk wake, and for a fleeting moment I was able to harbor a glimpse of the two beside me. The patient laying in the hospital bed was a pale elderly woman, her silver-haired husband sitting in a chair by her side. As time elapsed, she was wheeled in and out of the area for a number of tests, her husband always shuffling in tow of her traveling bed. Eventually, the couple was visited by neurologist clad in a crisp white overcoat, who informed the elderly woman that she had suffered a small stroke. She had lost the use of one of her arms, but she’d be treated and monitored, and she’d be okay. The doctor proceeded to educate the couple about the further neurological testing that would be required and the rehabilitation that would ensue in the following weeks as they tried to help her regain her strength and the use of her impaired limb. I listened to the thick silence as the news sunk in. Finally, the woman replied:

“But how will I do my hair?”

I imagined that she was referring to her inability to use the arm that she naturally relied on. I listened for her husband’s response. To my surprise, I almost sensed a smile behind the tone of his voice. I watched the shadow of his raised hand as he lifted it to gently pat his wife on the top of the head.

“Oh honey, I’ll brush your hair. I’ll put your curlers in for you too.”

Now that's love.

Illness has a way of stripping life of glamor, glitz, and the nuances that blind us to what lays before us. Illness exposes weaknesses while unearthing strength, and reveals what is real and what was merely smoke and mirrors. It quakes a life until its cracks widen and what is feeble falls away, and leaves what is relentlessly real standing clearly in front of us. Living life with an illness has proven to be one of the truest ways to live and has blessed me with the opportunity to witness raw courage, true compassion, and authentic love. For that, I am grateful.

Tidbits From Practitioner Byron White's 9/04 Interview

2011-09-26T13:23:00.000-07:00

By Candice, SpiroChicks Contributer

On September 4th health practitioner Byron White, the creator of the increasingly popular Byron White Formulas, gave a live Q&A session as a guest on Blog Talk Radio. The interview was nothing short of phenomenal. Byron White's infinite wisdom and insight was remarkable, as well as his compassion for those suffering from Lyme Disease and chronic illness.

Byron White has been treating those with chronic illness for over 37 years. He specializes in a number of alternative and naturopathic means of treatment, but has also been involved in pivotal medical research. The research he has taken part in focuses primarily on finding natural means of restoring health. In the 1980's, he suffered with Late Stage Lyme Disease and Multiple Chemical Sensitivity himself, which lead him to his research that resulted in the development of 27 different herbal formulas. Some of these formulas, such as A-Bart, A-Bab, and A-L Complex, have become the leading choice in alternative Lyme Disease treatment in the country.

What immediately struck me about Byron White was his refreshingly holistic view on chronic illness. Just as everything else in nature, he views the body as a layered system. With each detrimental layer that is peeled away, the body gains strength. He believes that eventually, the body will take over, and clear the remaining infection and toxicity itself. Every body is unique; not every Lyme patient requires a protocol focused on the eradication of the Lyme bacteria. Their surface layer may be heavy metals, fungus, parasites, or a virus. Once the first few layers are removed and the body begins to unwind and the infectious or toxic blockages are released, it may be able to take care of the rest itself. With both his knowledge and his faith in the strength of the human body, Byron White exudes hope. The following are tidbits of the wisdom that he shared.

Healing Chronic Illness

-A healthy body is constantly dealing with pathogens. It isn't until one of these pathogens finds a weakness and overtakes the immune system, creating an imbalance, that we become ill. Treatment is therefore necessary in order to bring the body back to a strong state of balance.

-Our parasympathetic nervous system is our healing system. When an infection takes over in our body, our sympathetic nervous system responds and we are sent into "fight or flight" mode. We can't survive as human beings when we are constantly running, therefore it is necessary to balance the sympathetic, parasympathetic and autonomic nervous system so the body is capable of of balance and healing.

-When your sympathetic nervous system is in overdrive, it's as though you have your foot on the gas pedal while your parasympathetic nervous system is laying dormant. Eventually, your sympathetic nervous system begins to burn out. Therefore, overstimulating an already stimulated sympathetic nervous system with things like antibiotics, drugs, and immune boosting protocols is not advantageous. It's about balancing the body, not stimulating it.

-Many times, a patient has autoimmune or over-activity in one portion of the immune system, and suppression in the other. Therefore focusing on boosting the immune system could be detrimental, much like stimulating an already overstimulated sympathetic nervous system. When people think infection, they automatically think of "suppression". That isn't always the case.

-Conditions such as Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Chemical Sensitivity are just labels for symptom sets. Every symptom has a cause. Yet, the same symptom in two individuals could have a different cause in each. Therefore, not all Chronic Fatigue patients have viruses, and not all Fibromyalgia patients have Lyme. These symptom sets are often neurological in nature, therefore they could be the result of a number of different causes that result in neurotoxicity such as mold poisoning, parasites, or even pesticide exposure.

-Autoimmune Diseases, like Lupus, are also labels. Lupus is a word that represents and autoimmune response that can be triggered by a number of things. All physiological responses have causes. The cause could be anything from a virus, bacteria, fungus, toxin exposure, heavy metal, or DNA related issue.

Bioresonance Testing

-Blood tests are most often an unreliable way of determining the cause of illness. They are typically falsely negative, and do not indicate what is priority for treatment in the body.

-You may test positive for a pathogen, but you may not be ready to treat it or it may not be on the surface layer in your body. The pathogen or toxin on the surface layer is the issue that the body requires addressing first. If it is left unaddressed, it could prevent the healing of the remaining layers. This is often the reason why one can chelate heavy metals for years but still have heavy metal toxicity; a different issue was on the surface layer. This is where bioresonance testing is useful. It can be used to reveal which pathogens may be causing symptoms (that blood tests often miss), and which issues are priority in treatment.

-Byron White uses bioresonance testing that is not machine based. He uses a combination of filters and kinesiology to specifically test for issues in the body. He is able to tests specific layers in the body, as specific as the DNA in the left eyeball, to see what is resonating in that particular layer of the body. He finds that the human machine, because of its sensitivity, is the most accurate form of testing. He has used it for years and has had much success. He now trains practitioners in the process.

Lyme Disease

-Treatment doesn't have to be a long and protracted process.

-Byron White treated a Lyme patient who also had cancer 40 years ago, and was given a drug for treatment. It was after cancer treatment that she went on to develop arthritis and a number of chronic symptoms. He discovered that the primary cause of her symptoms was the drug that remained in her system for over 40 years. He created a homeopathic to treat and detox the toxicity of the drug, and 3 weeks later she bounced back. Her symptoms were eliminated, even after suffering from these symptoms for decades.

-There are no blood tests for Lyme Disease to tell you whether or not you are "cured". Some pracitioners believe that you can never fully eradicate Lyme, and the best that you can do is get the patient to the point where their immune system can keep it in remission. Byron White disagrees; he believes that the body can fully eradicate Lyme. If this isn't possible in the patient, his second best scenario would be to push the Lyme into dormancy and strengthening the body enough to hold it there. But Byron White believes that Lyme isn't always as difficult to treat as many believe. Healing is possible.

-The focus of treatment shouldn't be about pounding away at an infection with different treatment modalities, but should be listening to the body and what it needs to heal. The body is designed to defend against and eradicate pathogens, therefore if strengthened and balanced, it is capable of dealing with chronic infections.

-You can have a pathogen, including Lyme Disease, that dies but stays in the tissue for years and the resulting toxicity causes symptoms.

-Generally speaking, "Post Lyme Syndrome" doesn't exist. Typically, if it isn't Lyme that's causing symptoms anymore, it is a different pathogen causing symptoms.

Bacteria, Mycoplasma, Viruses, Fungus, Parasites

-When Byron White did his original research as he traveled and tested across the United States, he found a number of pathogens that frequently came up in patients. One of them is not often talked about, Powasson Virus, which is a virus that is transmitted through a deer tick. It is often missed because it mimics Lyme Disease.

-Other common pathogens that most often show up in patients who are chronically ill include but are not limited to mycoplasma, mold, fungus, candida, nematodes, epstein barr virus, HHV-6, Coxsackie viruses, and Cytemegaloviruses. Each has the potential to cause symptoms and imbalance just as significant as Lyme.

-The good news is that each pathogen does not need to be addressed individually. You want to view treatment as a domino process. Address the issue on the surface layer and detox the body, and your system will achieve a little more stability and balance. With each layer addressed, your body gains strength and is eventually able to pick up speed and take care of remaining layers of infection and toxicity itself, much like instigating the tip of a line of dominoes.

-In the past, when our bodies had less environmental toxicity to deal with, people would contract an infection and they wouldn't even know it. They'd come in contact with something like babesia, and they would feel sick for a few days or a week while their body took care of it. Our bodies are designed to keep us well, so the goal and focus of treatment should not be to kill all pathogens but should be to strengthen the body so it can achieve protecting us once again. Our body is ultimately our best defense.

Environmental Toxicity

-If we didn't have as much environmental toxicity, we wouldn't have as many problems with pathogens. Environmental toxicity weakens the body, therefore it is crucial that it be addressed in treatment.

-Byron White recently developed a new formula to treat radiation toxicity due to the effects on our bodies resulting from the crisis in Japan.

Multiple Chemical Sensitivity

-Chemical sensitivity rarely stands alone. There is always a cause, but it doesn't have to be Lyme. They could have heavy metal toxicity, or they could have Leaky Gut Syndrome (colon issues), or an exposure to a toxic chemical.

-Lyme Disease (as well as other pathogens) can cause a significant increase in sensitivity to substances, including ones own hormones. One can become sensitive to phenols, which are found in hormones in our body but can also be found in pathogens like Candida. Typically when the pathogen is eradicated, the sensitivity improves.

Detoxification

-Often times, symptoms arise when we become too toxic while killing pathogens, not from the pathogens themselves.

-Typically the development of G.I. symptoms during treatment are neurological in nature, caused by the enteric nervous system, and are therefore caused by neurotoxicity. Detoxing neurotoxins can improve a number of neurological symptoms such as nausea, disorientation, headaches, mood swings, etc.

-Detoxification depends on the particular patient. Required detoxification methods, just like treatment methods, are not the same in all patients. There are situations where you wouldn't want to do colonics, detox baths, or saunas. Often times internal detoxification formulas are most effective, formulas or homeopathics that encourage the organs like the liver, intestines and the kidneys to dump toxins. It's great to then follow up with supportive external forms of detoxification for the lymphatic system such as dry skin brushing and detox baths if tolerated.

Mold Toxicity

-Mold's purpose in nature is to break things down and return it to the earth, so it has a tendency to work in a similar fashion inside of us.
-When treating a patient, look at their environment first. A patient can even do this themselves. You can purchase mold plates and set them out for 45 minutes, then close them and let them percolate for about a week. The development of more than 4 colonies of mold on the dish is problematic.

-If you have mold in your house, it is extremely difficult to get better.

-Once the environment is cleared, mold is almost always up in the patient's sinuses. This must be addressed. There are companies nebulizing antifungals for this purpose.

-You want to stop feeding the mold and fungus inside of your body by cutting out sugar and gluten from the diet and limiting carbohydrates.

-You typically want to use a binder to bind the mold toxins. There are prescription binders, such as cholestypure, but he never uses them as he has found that they cause problems in the liver and the gallbladder. There are natural means to bind and detox mycotoxins.

-Desensitizing the mold is often necessary as well once the body is detoxed to prevent reactivity. This can be done with a practitioner who is trained in homeopathy.

-Prevent mold growth in your environment by monitoring humidity. It should be between 35-40%. Fish tanks are a large source of humidity. A humidifier may be necessary. Also be aware of mold in drapes and household items after cleaning up the home.

Byron White Formulas and Byron White's Website

-Byron White does not use grain alcohol in his formulas. Grain alcohols are potentially problematic in many patients, as many with chronic illness are sensitive to grains, especially glutenous ones. Corn alcohol can also pose a problem because the majority of corn in our culture is genetically modified or treated with pesticides. Byron White Formulas are comprised of organic pesticide-free grape alcohol and anywhere from 7 to 17 herbs.

-Each formula is made by hand. Both industrial machines and heat sealing are entirely avoided in the production of the formulas to avoid petrochemicals and heat compromisation. Absolutely everything is done by hand.

-There are three components to each formula: a historic component, a scientific component, and a bioresonance component. When he fell ill, he used his background in herbology to explore which herbs were historically known to treat pathogens. With bioresonance testing, he found that when the herbs stood alone, none of them tested well against Lyme. This lead to his scientific research and the development of potent formulas that create much great physiological shifts with just a few drops.

-Your G.I. tract begins in your mouth, so the formulas begin working in the mouth and continue to work as they travel down your esophagus and into your intestines.

-They work in concert with your body, and work with various organs in your system. For example, one of the herbs used in some of the formulas is gao tang, which targets Lyme and co-infections but also increases serotonin uptake in the brain. This leads to manufacturing serotonin in the gut, a process that typically happens at night. This is beneficial for many Lyme patients, since many struggle with insomnia, making it difficult for the body to successfully maintain proper levels of serotonin and other crucial neurotransmitters.

-Many of the formulas also include cyst busters, which prevent the development (and aid in the eradication of) of the cyst form of the targeted pathogens.

-The formulas are extremely potent and powerful, and cannot be used without the guidance of a practitioner. Practitioners can email Byron White to inquire about training in the use of the formulas and also in bioresonance testing at ByronWhiteFormulas@gmail.com.

-Practitioners may also call and inquire about specific cases, and will most often receive a response that same day. Byron White also holds teleconferences with doctors in need of assistance.

-The Byron White Formulas website can be used by patients to find a practitioner near them who is trained in using Byron White Formulas: www.byronwhiteformulas.com/

Thank you Byron White, for your wisdom, compassion, research and dedication to the work that you do to help us achieve wellness. Thank you for treating us as individual people, rather than a disease. Your holistic view on healing is not only enlightening, but it holds a vast amount of promise and hope. I know that I can speak for many when I say that we look forward to the future of Byron White Formulas and your research, and the powerful effect that it will have on medicine and the treatment of chronic disease.

What To Eat When You "Can't Eat Anything" Part 2: Recipes, Tips and Tricks

2011-08-08T18:06:00.000-07:00

By Candice, Spirochicks contributor
Originally posted on Infectiously Optimistic

For Part 1 of the article, which includes information on food allergies, leaky gut syndrome and rotation diets, click here.

The following is the promised collection of 24 food allergy friendly and rotation diet compatible recipes, along with helpful tips and tricks to get you started! Please remember that this is a loose example of a rotation diet and is meant to inspire you to create your own, based on your personal sensitivities and needs. Don't be afraid to tailor recipes to suit you and your unique body.

-

Breakfast-

Day One:

Sketch Free Vegan Eating's Sweet Potato Vanilla Patty Cakes

Day Two: Affair's of Living Coconut Carrot Mash with Bacon or Ground Beef and Collard Greens

Day Three: Teff Porridge

Day Four: Diet Dessert n Dog's Grain Free Porridge (personally, I am allergic to walnuts so I used sunflower seeds, and did not include a fruit)

Snack-

Day One:

Affair's of Living's Shamrock Shake

Day Two: Fit Daffy's Coconut Apple Pudding

Day Three: Nourishing Meal's Pumpkin Puree and Elana's Pantry's Oven Roasted Broccoli inside of Sketch Free Vegan Eating's Brown Rice Tortillas

Day Four: Gluten Free Cat's White Bean Dip with Gluten Free Day's Flat Bread (also works well with amaranth flour, for rotation purposes)

Lunch-

Day One:

Nourishing Meal's Adzuki Bean and Yam Hash

Day Two: Affairs of Living's Socca with The Daily Dietribe's Roasted Brussel Sprouts and Acorn Squash

Day Three: Diet Dessert n Dog's Tuscan Bean and Chard Soup

Day Four: Simply Sugar and Gluten Free's Black Bean, Quinoa and Butternut Squash Salad (I use Millet instead of Quinoa, and grapeseed oil as dressing. Sweet peas or roasted turnips are also a great replacement for squash.)

Snack-

Day One: Blueberry Avocado Smoothie (I personally use raspberries. Mmm!)

Day Two:

Elana's Pantry Kale Chips and Carrot Fries with Sauerkraut

Day Three: Affair's of Living's "Seaweed Crack"

Day Four: Affair's of Living's Flaxseed Crackers

Dinner-

Day One:

Lamb Chops, Roasted Beets, and Sauteed Spinach

Day Two: Affair's of Living Cumin Kissed Kale with added Ground Turkey Thigh Meat

Day Three: Eat Love and Train's Gingered Green Beans and Pre-Cooked Quinoa with Roasted Baby Artichokes

Day Four: Broiled Pork Chops with Broiled Zucchini and Asparagus

Dessert or Late Night Snack:

Day One:

Jicama dipped in Heather Eats Almond Butter's Pumpkin Seed Butter

Day Two: Granny Smith Apple and Almond Butter

Day Three: Wild Rice Cake and Sunbutter

Day Four: Celery and Cucumber dipped in Tahini

Tips:

1. Make sure you rotate your oils and fats. I personally feel that it is safe to repeat oils throughout the day, typically up to three times. I then do not consume that oil for 4 days. Example for fat rotation (for 4 day rotation, 6 meals per day):

Day One: Pumpkin seeds or with 2 meals, Ghee with 3 meals, Almond butter with 1 meal

Day Two: Coconut Oil with 3 meals, Olive Oil with 3 meals

Day Three: Sesame Seed Butter or oil with 2 meals, Butter with 2 meals, Flax or Flaxseeds with 2 meals

Day Four: Sunflower Seed Butter or Oil with 2 meals, Grapeseed Oil with 2 meals, Avocado with 1 meal

2. Don't over-consume brown rice. It's easy to get stuck in the brown rice rut! There are plenty of other gluten free grains and starches. Example:

Day One: Brown Rice and Quinoa

Day Two: Amaranth and Teff

Day Three: Millet and Wild Rice

Day Four: Buckwheat and Sweet Potato

3. Beans are your friend! Example:

Day One: Lentils and Adzuki Beans

Day Two: Black Beans and Pinto Beans

Day Three: Kidney Beans and Garbanzo Beans

Day Four: Great Northern White Beans and Navy Beans

4. Don't be afraid to venture away from chicken. Examples:

Day One: Lamb

Day Two: Pork

Day Three: Beef

Day Four: Turkey

5. Don't forget to rotate your spices and flavorings; they count too!

6. In order to keep your blood sugar stable, don't eat carbohydrates and natural sugars without an adequate amount of fat. To stave off hypoglycemic episodes, be sure to consume fat and a small ammount of protein with every meal. Fruit and starches on their own temporarily spike glucose levels and cause a blood sugar crash 2 to 3 hours later, whereas protein and fats aid in maintaining blood sugar levels throughout the day. So, be sure to add a little seed butter to your sour fruits, or a little oil or butter to your gluten free grains.

6. Simple Rules of Food Combining (for more info, click here):

-Never combine fruits and fructose with other foods, unless they classified as a "sour" fruit. Sweet fruits are high in sugar and are naturally metabolized quickly, but when eaten with other food groups that digest much slower, the sugar is allowed to sit in the digestive tract and putrefy, therefore contributing to unhealthy levels of yeast and harmful bacteria. Sour fruits, such as granny smith apples, raspberries, cranberries or lemons, are safer to combine with other foods due to their lower sugar content and composition. Granny Smith Apples or Raspberries with nut/seed butters or avocado are great combinations. Sweet fruits are best eaten in moderation due to their effects on blood sugar and yeast levels, but when consumed they may be combined with a small amount of coconut oil or other non-protein oils and fats in order to maintain stable glucose levels. They combine very poorly with starches and protein.

-Never combine a protein and a starch (this means no meat and potatoes, chicken and brown rice, or ground beef and gluten free pasta). Protein and starches require different enzymes in order to digest properly in the stomach and the digestive tract. For optimal digestion, eat them at separate meals. Each go perfectly with vegetables and fat. Instead of a beef patty on a gluten free bun, try wrapping your burger in lettuce. Instead of meat in your chili beans, opt to cook them vegetarian style and eat them over gluten free grains.

Diet rules, restrictions, and rotation can be overwhelming at first. Most of those who are prescribed such diets are already low on energy and stamina as well, which makes approaching such treatment appear to be a monumental feat. Yet once a week or two goes by and your diet becomes routine, you will find that it isn't as challenging as if first appeared. You'll also find that it's undoubtedly worth it. Stick with it, and allow your body the crucial chance to strengthen and heal. And, enjoy!

What To Eat When You "Can't Eat Anything Part" 1: Restrictions, Rules and Diet Rotation

2011-08-07T17:43:00.000-07:00

By Candice, Spirochicks contributor
Originally posted on Infectiously Optimistic

It's possible that my personal diet has the longest name out of all documented diets known to man-kind.

I am on a gluten free, multiple allergen free (dairy, soy, corn, nightshades, fish, egg, nut, onion, garlic etc.), sugar free, organic, blood sugar friendly, rotation diet that follows the principles of food combining and contains enough calories to gain and maintain weight.

Is your head spinning yet? Mine was.

At first, all of the restrictions and the many complex rules made me want to run and hide in the corner with a bushel of celery and a bag of rice cakes. Yet, once I took a deep breath and assessed the situation, I realized that my diet was merely just another puzzle. All puzzles have solutions.

And guess what? It's working.

Where to Begin

First, you and your doctor, naturopath, nutritionist or chiropractor must figure out your personal food sensitivities. Most often, gluten, dairy, soy and sugar are the instigators in inflammatory responses in the body. Additionally though, we all have at least a few odd foods that our body specifically can't handle. Some of us with impaired immune systems end up having more additional sensitivities than we can count on all twenty fingers and toes. It's crucial to use your practitioner's help in figuring out what those are. For me, either Autonomic Response Testing (ART) or bioenergetic screening methods such as ZYTO have been most helpful.

Why Do I Have Food Allergies?

Most of us are aware that food allergies and sensitivities cause inflammation, but many don't realize that food allergies are often the result of pre-existing inflammation within the body. Typically, this pre-existing inflammation has been caused by immune dysfunction or an immune system invader, such as a toxin, bacteria, fungus or parasite. An immune response to a toxic or infectious invader often begins in the digestive tract, where 75% of your immune system resides, and irritates the lining of the intestines.

Our intestines are built to both fuel and protect the body. They have the ability to allow essential tiny substances into the blood stream, such as nutrients like amino acids, fatty acids and minerals, but they also have the ability to block larger more harmful molecules that we ingest from being absorbed into the blood stream. Yet when your intestines become inflamed, the spaces within the intestinal lining separate, and the larger unwanted molecules residing in our digestive tract are allowed to pass through. This means that when we consume foods that are difficult for our body to process or that cause inflammation (like wheat, corn, dairy, soy, nuts, etc.), the lining of intestines separate further and undigested particles of food are allowed to pass into the blood stream, along with intestinal bacteria, viruses, fungi and toxins. The body sees these large molecules as harmful invaders and it triggers an antibody response, even if the particle is merely food. The antibody response evokes detrimental cytokines and oxidants, which create a myriad of unpleasant symptoms and systemic inflammation. This phenomenon is known as intestinal permeation, or Leaky Gut Syndrome.

My What is Leaking?

Intestinal permeation, or "leaky gut syndrome", sounds like the butt of a silly joke (no pun intended). Yet, Leaky Gut Syndrome and food allergies are no laughing matter. The symptoms of food allergies often go undetected or are mistaken for other conditions, therefore allowing the undetected reactions to deteriorate the lining of the intestines and further inflame the rest of the body, including the brain. Not only is the digestive system responsible for providing the nutrients and fuel that the functioning of your entire body depends on, but it also has a direct effect on our neurological health. When the epithelial cells of the digestive walls become inflamed, the epithelial cells of the blood brain barrier also become inflamed, therefore leaving our brain susceptable to the toxins, infection, and inflammation that have been released into our bloodstream. (4)

Food allergies and intestinal permeation produce a myriad of symptoms, some of which include stomach pain, rapid heart beat, hot flashes, bladder disfunction, sinus issues, migraines, brain fog, and chronic pain. While these symptoms are concerning, the real danger lays behind the affects on the body that you can't feel or see. Some people with food sensitivities claim that consuming potentially allergenic foods really don't noticibly bother them, but what they are unaware of is the silent suppression of their immune system, the destruction of the villi in their intestines, or the weakening of the central nervous system. The resulting damage and inflammation slowly and stealthily weakens the body, therefore leaving it susceptable to serious health effects such as malnutrition, heart disease, and even cancer. In order to repair inflammation and damage and strengthen the body, complete elimination of allergens and sensitivities, as well as a rotation of "safe" foods, is key.

Rotation Diets

Eliminating and abstaining from allergens is key in healing the immune system, digestive system, and inflammation throughout the body, including the brain (2) . In an informative article about gluten sensitivity, nutritionist Donna Eden writes "Studies have shown that the smallest amount of gluten, say a cracker the size of 1/8 of your thumbnail, will have a prolonged inflammatory effect in the body for up to 6 months after ingestion if you are gluten sensitive." (3)

After one fully masters the elimination of gluten and other allergens from their diet, it is helpful to consider rotating foods. Rotation aids in the healing of the immune system and widespread inflammation, and is also critical in preventing the development of new or additional sensitivities, as well as maintaining your list of "safe" foods. (2) When a patient's intestines have permeated, undigested food particles leak into the bloodstream until the gut has a chance to heal. By rotating foods from a patient's "safe" list, negative immune responses to a particular food is less likely, therefore reducing the likelihood of the development of a repetitive and chronic immune response. The body typically takes 4 days to rid a food from its system and regenerate histamine, therefore a four day food rotation diet allows the body to build tolerance and strength while eliminating the damaging effects of a histamine related or immunological response. A 4 day rotation diet allows the body to breathe and heal, therefore providing an opportunity for a stronger immune system, digestive system, and nervous system.

What To Eat When You Can't Eat "Anything"

So, you have your list of allergies and your list of "safe foods" in hand. You also know that your digestive system is impaired (and you may feel as though someone sucked the energy out of you with a vacuum cleaner). This begins to look like a recipe for starvation. I'm here to tell you though that it doesn't have to be. Personally, through allergy elimination, food rotation, and proper food combining, I have been able to reduce inflammation, reduce my allergen list, and gain some much needed weight. And, I never go hungry.

Food combining is optional and can complicate an already challenging diet plan, but it can also greatly aid an impaired digestive system in processing food and quieting digestive upset. When our digestive system is overtaxed by infection, inflammation and toxicity, it stops producing adequate amounts of the the acid and enzymes required for proper digestion. When we consume carbohydrates and protein at the same time, they each require an ample amount of a different kind of digestive enzyme. These two enzymes cannot effectively be produced together, especially in an impaired digestive tract. Protein requires the production of the enzyme pepsin, and carbohydrates require the production of pytalin. When produced at the same time, they cancel each other out and further reduce stomach acid, making digestion even more difficult. For the rules of food combining, scroll to the bottom of the page or check out a detailed article here.

I've gone to my favorite allergy friendly foodies to round up some recipes that are friendly to an allergy elimination and rotation diet. Tailoring recipes to fit your specific needs is important though, so keep in mind that this is just a sample of the many possibilities of diet rotation. For example, some recipes may include garlic, which you may be sensitive to (as I am). Exercise your creativity and find what works for you. Here, I've used a 4 day rotation diet as a relaxed framework to present the rockin' recipes. You'll want to spend more time on your rotation diet though, in order to be sure that you aren't repeating or over-consuming any foods or ingredients from your "safe" list. So, don't be afraid to swap animal proteins, grains or oils in the recipes in order to fit your four day rotational needs.

Stay tuned for Part 2, which will be posted tomorrow, Monday August 7th. Part 2 will include a complete list of 24 recipes (with a few delicious pictures), sample rotation diets, and a few tips and tricks. Check back soon!

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References

1.http://altmedicine.about.com/od/healthconditionsdisease/a/TestLeakyGut.htm

http://balancedbites.com/2010/07/is-your-gut-leaky.html
2.http://bodyecology.com/articles/gluten-sensitive.php

3. http://www.neurology.org/content/56/3/385.abstract?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&author1=Hadjivassiliou+&andorexactfulltext=and&searchid=1118505787326_2028&stored_search=&FIRSTINDEX=0&sortspec=relevance&resourcetype=1&journalcode=neurology

http://altmedicine.about.com/od/healthconditionsdisease/a/TestLeakyGut.htm
4. http://www.biohealthnow.com/dangerous-grains

5. http://bodyecology.com/articles/alzheimers-and-inflammation

Better Living Through Lyme

2011-06-29T16:40:00.000-07:00

by Karen, Spirochicks Contributor

Well, all right. Not “better.” How about “more focused?”

A few days ago, I woke up clear-headed for the first time in nineteen days. I reveled in the lack of rubber cement in my brain. And then I was really mad. It’s hard to untangle the thoughts in a linear progression-- they all arrived more or less together, like email after a long server malfunction. The upshot was that two of the most important things for me to focus on right now are my health and my career, and that I’d sacrificed one in a misguided effort to protect the other.

Six years ago, when I started my current job, a woman senior to me, we’ll call her Dana, took an instant dislike to me. I’m not unique in this regard--she is verbally abusive, to some degree, to a lot of people. I can take constructive criticism and I don’t shy away from confrontation, but I can be bullied, and Dana had my number. Eventually, she was in a quasi-supervisory position, reviewing some of my work. Her feedback was sometimes truly helpful, but it was laced with vitriol. Sometimes her language was frankly abusive (unless in your world “lazy” and “stupid” pass for constructive). I did everything I could think of to placate and please her. None of it worked. It’s been awful, but I’ve never thought of saying anything to my boss other than “Okay, it’s still bad now I’m going to try this...” Not a fan of confrontation, he’s been okay with letting me muddle through on my own.

Dana was the source of a tremendous amount of stress for me before Lyme came into my world. My very first herx started on June 3. It’s been bad. My doctor ordered me to work from home, half days, if I worked at all, while I weathered the worst of it. Afraid working from home would draw Dana’s wrath, though, I opted to go in every day. I’ve been sitting at my desk clocking in my four hours, utterly unable to do meaningful work and so exhausted I wanted to cry. The morning my brain de-fogged, the stupidity of this hit me. What Dana thinks of me has no effect on my career, really. What I’m doing to my health in the name of appeasing her...well, that’s extremely unproductive. So I went straight to my boss and told him I couldn’t take it anymore. And an hour later, my work was being funneled to two other seniors for review. A source of agonizing stress for years gone just like that--poof.

I’ll give you that doesn’t sound very exciting, or brave. It would be a more exciting story if I’d gone to Dana directly, defending myself and my fellow abused colleagues in a barrage of verbal glory. But this, I’m learning, is part of how I have to move forward, separating the things that are worth my energy from the things that aren’t. I’ve spent more than enough energy on Dana...it was time for someone else to have a turn.

Since my Lyme adventure started, I’ve thought about parallel-universe me, the one who doesn’t have Lyme. I imagine all the things she is doing that I am not, that I can not do right now. No, this is not a soothing exercise. When I jettisoned Dana, though, for the first time, I did something I’m pretty sure parallel-me is not, was not, strong enough to do. I’m not saying I’m grateful for the Lyme. It’s making me take my SUV-sized life and cram it into a Civic. I’ve just started packing the Civic, and there are a lot of things I want to put in there. Not loading Dana leaves more room. Getting the blasted spirochetes to let me load the stuff I want is part of the challenge, but learning what to leave on the curb is a good lesson in coping too.

Guest Post: The Thief Inside of Me...

2011-06-28T16:46:00.000-07:00

By Sarah A, Guest SpiroChick

Editor's Note: In May Sarah submitted this visceral and gripping story about what her Lyme Disease is like on her worst days. We editors sometimes work in Lyme time... slow as molasses. Regardless, we wanted to share part of her harrowing journey, for Lymies and non-Lymies alike.

I wanted to write about what it's like to have Lyme, on a day with a lot of symptom flare -ups, which unfortunately are almost every day for us with Chronic Lyme. A good day for us would be enough pain for a normal, healthy person to go to the emergency room. That type of feeling is the bottom of our pain scale, and on most days, we are wishing we were only feeling a "good day's" worth of Lyme pain.

The worst mornings I wake up sobbing almost as soon as my eyes open. It's hard to explain what it feels like to go from unconsciousness (usually brought on by all the painkillers and muscle relaxers I needed to take in order to lie down for more than twenty minutes without a severe muscle spasm) to waking up and feeling pain flood into every inch of my body. It is an overwhelming feeling that I have never been able to get used to. I never consider medicated sleep to be real, actual sleep. It's just a dark hole I fall into for a while, then they fade off, and my whole body, nerves, and muscles start screaming all at the same time.

My first reaction is to struggle into some sort of position that may alleviate some of it, but I can barely move. I have so little strength in my legs, and my hands are too crippled to lean on them to get up. The only way I can get up on my own is to do a full sit up with no help from any muscle besides my stomach. Some mornings I can accomplish this, other days I am trapped by the pain, squirming and unable to get up or turn over.

If I didn't take the pills, whether they be one of the endless prescriptions of sleeping pills, painkillers, muscle relaxers, or a combination of all three, I would not sleep at all. My body feels completely exhausted, but I can easily not sleep for days, so I choose the black hole of unconsciousness over the hell of being awake and feeling all the pain that creeps into every inch of my body.

I take my medicine at 5am every morning. The schedule consists of probiotics, vitamins, and my anemia medicine with food. Two hours later I take a time released muscle relaxer that helps make the spasms less intense; on top of all that, I also take four painkillers. I try as hard as I can to sleep a little bit after that because even if I'm not tired, I feel my body's exhaustion and it is hard to even lift my hand or finish a sentence. All the resources of my body are being used 24 hours a day to fight an intruder that has been taking over my body for over a decade.

It's also around this time that I must get up and go use the bathroom. Depending on the pain, I may be able to get up with crutches but on the worst days I need someone to help pick me up out of bed and literally put the crutches under my arms that I can no longer lift more than halfway without severe pain in my shoulders.

I have to stand frozen with the crutches for about a minute while the pain in my body shifts to different muscles. My legs are weak and when I start to walk they wobble very clearly. With every step I feel as though my legs are going to give out, shaking under me with no balance. All I have are the crutches that are buried under my arms, since my hands are too crippled to grip them the correct way, I must lean on them completely in order to use them at all.

My bathroom is pretty small for a person using crutches, so moving around in there can be tricky. I think most disabled people have a map in their heads of every little spot on the floor of every room where they believe is the optimal place for a crutch or their cane, or what part of the wall to lean on, to try and minimize as much pain as possible. These actions are very deliberate, thought out movements, every step is slow and concentrated, one wrong twist of my body causes pain that takes my breath away.

When I get back to my bed, I must fall backwards onto it, sort of collapse, instead of sit down slowly like a normal person. My knees are too damaged and weak to support me if I tried to sit down like a normal person. I have to hold on to the handle on my crutch and try to lower myself as much as I can, and then when I'm there, just fall down. Sometimes the falling is hard because I know sudden movements like that bring on muscle spasms or shooting nerve pain.

Although most of the joints in my body have been damaged, most permanently, including three fingers on my right hand I have not been able to use in years, the fingers on my left hand, the toes on my left foot, my ankles, both knees, my elbows, wrists, shoulders, and most of my knuckles are at this point damaged to the point that they need to be replaced if I am to use my hands properly ever again, most of my pain at this point is muscle pain. I would say that the pain I go through on a daily basis is similar to the symptoms of fibromyalgia.

Sometimes people have a hard time understanding how one disease could affect every single system of the body, some people even say it is impossible; that the patients are crazy or lying. The Lyme bacteria, shaped like a corkscrew, burrows into any part of your body it wants to; your joints, muscles, heart, organs, eyes, and even has the rare ability to cross the blood-brain barrier, which means it has the ability to imitate most mental illnesses. I think if you could imagine your entire body saturated with tiny corkscrews eating you alive, it becomes a little easier to understand how someone could have such varying symptoms, and such immense pain.

During the afternoon, around one, it's time for me to take all my antibiotics; I am usually on two at the same time, which I take with food to help minimize my chances of throwing it up. Given that the doses of antibiotics Lyme patients have to take, sometimes it's hard to keep it down, as we really aren't meant to be taking such high doses, and sometimes for years, all of this adding to the toxicity growing in our sick bodies from Lyme die-off.

I have to wait a few more hours before I have to take my next time-released muscle relaxer, which honestly, and like just about everything else, has started losing its use as I am feeling that it is no longer keeping the spasms from getting so intense.

For some reason, evening and night are my worst times for pain. Spasms become so intense I can't breathe, with the muscles so clenched I cannot expand my chest in order to get air into my lungs. I try to scream for someone to help me, but it's hard when I can't take a full breath. Finally my mother hears me and runs down, I try to tell her I can't breathe, and tell her to push on the spasm on my back. I have to literally scream to get through the pain of pushing the spasm out. It's almost like being stabbed, and I always feel like I am bruised whenever this happens

If I try to lie down, I start to shake uncontrollably, to which I need someone to wrap me in all the blankets we have and try to warm me as best as they can. At first thought to be a Lyme problem, we now suspect it is a symptom of the Ehrlichiosis, another tick-borne infection I am trying to fight. The shaking of my body is so intense every muscle in my body clenches, my jaw locks and all I can do is stare straight ahead and try not to concentrate on the pain.

Honestly, I hate crying about the pain, I hate breaking down when I take two steps and realize I might not be able to take a third at that very moment. I have a pattern, I take a drug that starts to relieve some symptoms, and for several months I enjoy their absence, but then a relapse always comes, worse than the time before, excruciating and seemingly endless.

Seeing the pattern of how much worse these relapses are, I realize with a clear and logical mind that I will most likely never be cured of this disease. It has stolen from me my future, friends and family that I loved, dreams I had, and accomplishments I dreamed of achieving. Now every day I wake up just to try and survive another twenty-four hours. This is my occupation, the job I have had for over a decade now, having become an expert on how to try and keep myself alive.

In the end I know one thing, either this disease will win, or I will beat it. The stale mates are too excruciating for me to deal with, I don't want a future filled with needing the help of those I love, or a life where the things I love are heart-breakingly out of my reach. With every relapse my world gets smaller and smaller, sometimes just confined to my bed, imagining other places I wish I could be, defying my pain and disabilities, enjoying something beautiful that lies beyond the walls around me.

There is not one thing during any day that I do because I want to, my life is calculated out into time schedules, cups of pills and medicine to try and keep it all down, vomiting so much that I throw up blood, waiting and wishing for sedatives to help me black out of this suffering for even a little while; even when I know how much pain will be flooding back into my body as soon as I open my eyes.

May was Lyme awareness month, and I see so many of you living beautiful lives, getting married, having children. I have come to believe I won't have the chance to accomplish some of the wonderful things those I love have. Buying a house and having kids, because of the chance of passing Lyme on to a child I cannot have a baby of my own, I would never risk it.

So, Lyme disease awareness; I suppose all I really want to say is, if you can wake up every morning and get up, go to work, kiss your child, walk out the door, and enjoy your day, please remember that for all of us with Chronic Lyme, we woke up one day, and had those things, (or the opportunity to obtain them) taken from us, and changed forever. It never got better for me, and I will probably never recover. So please, to all those out there, especially with children, take all the precautions necessary to keep your family safe. If I could keep one person from this nightmare of living inside a prison that is my own body, at least some of the pain would have been worth it.

Please be careful, I want nobody I love to feel this kind of pain, only to understand it, and save themselves from its reaches. And please, pass this note on, and perhaps save someone else from this fatal infection.

Sarah has battled Lyme disease for well over a decade. She has never known what it was like to live a normal adult life, as she has spent all of it with chronic pain and illness. She spent a lot of those years misdiagnosed with other illnesses, and treating things she didn't have. She is currently writing a book on her experiences with the disease, and currently lives on the east coast of the U.S. This was written for Lyme awareness month last year. Sarah thought it might be helpful for family or friends of those suffering from the disease, as we aren't always able to articulate exactly what it is like to live inside our bodies. You can email her at woahscience@gmail.com with any questions or comments.

How do you think about your health?

2011-06-09T08:48:00.000-07:00

by Ozone Amanda, Spirochicks Contributor

I do not “have” lyme disease. I have suffered from the effects of lyme disease for years and am currently working to recover from severe lyme infection, but this disease has never been part of my personality.

It’s taken me a while to arrive at this idea. It may seem like mere semantics, but I’ve found that the times I felt the sickest, the weakest, the most trapped-on-my-couch-because-I-had-no-energy-to-move not only corresponded to times when the bacteria and its co-infection friends were on a rampage, but also to times when I believed—without consciously being aware of my belief—in the power of the bacteria. In fact, the rampage may have been aided by an unconscious, further suppression of my immune system, due to depression.

I read about the intelligence of the lyme bacteria, and its prevalence in ticks and other blood-sucking insects—encouraged by warming patterns of climate change, and the limited population of natural predators for carrier animals, such as field mice. All of this information, while helpful in the long run, built the profile of a threatening, menacing, crafty bacteria, which was attacking me and would be very, very difficult—if not impossible—to get rid of. The difficulties of infection are valid, and my fellow lyme sufferers will probably agree that it sometimes feels like the Borrelia burgdorferi (Bb) bacteria is a formidable enemy. But, to give in to the power of the bacteria and disease, is to forget how powerful our own bodies and immune systems are.

On days when my hair is falling out, my stomach refuses to digest, my head feels like one big gray cloud, and I can’t function to do basic chores, my body may not seem very powerful. But, as intelligent as any bug may be, our immune systems are highly evolved and have the ability to fight. Sometimes, it takes only a few days or weeks—as with a cold. Other times, our systems need extensive help—whether from prescription drugs and herbs, or complimentary treatments like cleanses, ozone, intravenous vitamin C, diet, bodywork, psychotherapy, or support groups.

I’ve come to believe that many times we unknowingly get in the way of our own healing. For instance, I probably needed therapy after the passing of my mother, nutritional help to correct my diet, and the courage to leave a job that felt oppressive. Not attending to these needs for many years likely compromised my immune system, and who knows if I’d have gotten this sick if I had listened more to my body and lived less in my mind.

Healing is always a personal journey and everyone’s circumstances are different. But, I know that, for me, health has seemed much more possible and my body has felt much stronger since I took back the “image of power” from colonies of single-celled Bb and remembered that my body, too, is strong. I practice feeling my body, becoming aware of its complaints and movements everyday. It’s had some rough times but, underneath it all, it’s strong and preparing to kick the fight up a few notches. I believe in my health, and know that I am recovering from lyme disease.

LymeLight Foundation: First Foundation to Offer Treatment Grants for Patients with Lyme

2011-05-30T10:02:00.000-07:00

By Candice, SpiroChicks Contributor

SpiroChicks are thrilled to announce the newly formed LymeLight Foundation. A foundation that focuses on treatment grants for children with Late State Lyme Disease.

Born a Soldier

Most people look back on their childhood and have memories full of days in the park, school field trips, pool parties and play dates. Most have photo albums documenting their teenage and college years as well, with pictures of proms, big football games, and graduation ceremonies.

Yet, a small portion of youth are not that fortunate, not because they don't have the same opportunities that their peers have, but because they are not well enough to take them.

While many children are out with their friends, practicing sports, or working on big school projects, children with Late Stage Lyme Disease are at home on the couch. They aren't munching on a bowl of popcorn and doing homework or watching TV like the average American youth, but they are likely either hooked up to an IV pole or taking their third nap of the day.

Kids and young adults infected with Lyme have not only been robbed of their physical strength, but they have been stripped of their opportunity to truly be young. They are launched into a world where they are forced to be strong, despite the fact that their bodies are weak. They make sacrifices adults would have a hard time making, and face obstacles and mountains that seem to tower above them. Children with Lyme Disease are born soldiers.

I know this first hand. I'm 22 years old, and I'm entrenched in year 6 of my battle with Lyme Disease. I was only 16 years old when I fell ill and began my fight for health.

I have the unique perspective of a patient who has been infected as both a teen and a young adult. I know what it's like to watch your parents struggle endlessly to keep up with your medical bills, and burn out as they try to care for you physically and meet your extensive needs. I know what it's like to look at your parents and feel responsible for the bags under their eyes and the grey hairs on their head. Yet, I also know what it's like to then grow up and be out on your own as a sick young adult. I know what it's like to be incredibly ill, and have no job experience, savings, college degree, or significant other to rely on, yet face caring for yourself both physically and financially.

I remember what it felt like at age 17, to lay undiagnosed in a medical gown in a hospital bed, knowing that it was the first day of of my senior year of high school. I knew that I should have been pulling up in the school's parking lot in a car that said "Class of '07" across the rear window. Instead, I was hooked to an IV, surrounded by nurses and beeping machines. I also now know what it's like to now be diagnosed and in treatment, and to watch friends graduate from college and move on with their lives as they reach for their dreams, while I lay stagnantly on my bed. When you fall ill during your youth and miss out on those major stepping stones and building blocks in life, such accomplishments seem so far out of reach. The only thing that allows us to keep hanging on is the notion that treatment is going to get us there. We know that if we stick out the treacherous treatment that Late Stage Lyme requires, we'll be able to grasp those opportunities once again.

Yet, due to the politics surrounding the disease, we're often stripped of the treatment and care that we need to ensure that we have the future that we dream for and deserve. The IDSA and treatment guidelines make it literally impossible to receive insurance-covered treatment. Necessary, life sustaining treatment for Lyme patients has become a commodity that we all struggle painstakingly to afford. Sadly, many cannot.

The LymeLight Foundation

Most organizations and foundations in support of Lyme Disease are admirably focused on raising awareness or raising funds for research. Sadly despite the fact that Lyme can easily bankrupt a patient and their family, no organization to date offers grants to help with treatment costs. I am honored to announce that the newly established LymeLight Foundation has set out to raise funds for treatment, particularly for children fighting the disease.

LymeLight Foundation was founded by the benevolent families of two young Lyme patients. Sarah and Maggie are both in their early 20s, and have displayed immense strength and courage as they've fought the disease over the years. Maggie, who has victoriously battled Lyme for 10 years, came up with LymeLight Foundation's concept. Sarah's family was inspired by Sarah's IV nurse who had a similar idea, and they eventually teamed up with Maggie's family and a few other helpers to materialize the dream. With extensive effort, Scott and Phyllis Bedford worked with Michael and Bonnie Moe to create the official LymeLight Foundation. Their mission is to reach out and make treatment available to young struggling Lyme patients.

“LymeLight Foundation will sponsor several fundraising events throughout the year with the mission of raising funds to enable children with Lyme disease to receive proper treatment and medication.” -Phyllis Bedford

LymeLight Foundation will work to involve the community in raising funds through various creative fundraising events. They plan to host theatre nights, fashion shows, and art nights, in hope to raise enough to provide relief for children battling the disease. Their first event will be hosted by Maggie's subdivision of the Foundation, LymeLight Productions.

LymeLight Foundation's first Fundraiser, and LymeLight Productions first show "You're a Good Man, Charlie Brown" will have an official opening night on June 10th at the World Class Campbell Center at Sacred Heart Prep in Atherton, California. Maggie, who has now succeeded in becoming a student in Ithaca College's theater program, has recruited 5 of her incredibly talented peers to join her in the cast. Please visit LymeLight Foundation's website to purchase your tickets, but to also find out how you can sponsor the event. Be sure to take a look at the special opportunities that are exclusively offered to sponsors, and if you are a Lyme patient yourself, please seek out the information for the matinee show on the 11th. It is free to Lyme patients and their families.

Please consider sponsoring or donating to the cause. Treatment need right now is greater than most can imagine. By becoming a sponsor or making a donation, you could be handing a child back a piece of their future. You could be the one who reignites their light at the end of the tunnel.

Details on LymeLight Foundation's mission or their upcoming production as well as information on how to donate or become a sponsor can be found at their official website, http://www.LymeLightfoundation.org.

Guest Blogger Bob Cowart: Sleepless in Berkeley

2011-04-27T11:43:00.000-07:00

Editor's Note: Bob dictated this post into his computer. We are in awe.

There is something about Lyme that is particularly infuriating: It messes with your head and your heart. Just like Love. After 2 hours of sleep, I just woke up with not only trembling in my chest that is running at about 8 Hz (the same as my tremors elsewhere, such as feet and right arm), but with a high pulse (83). At first I thought vaguely, "Oh, you're ok. This is normal. True, you could barely eat dinner tonight, trying to coordinate your arms, and you had trouble standing upright in the shower at the gym without falling over, almost froze like a block of concrete staring at the bed tinight trying to remember how to get in it, or remember how to brush your teeth, but it's nothing. Roll over and go back to sleep. Ok. Now, how do I roll over, again?" For anyone with neuro Lyme or with Parkinson's, these experiences are common. This is everyday reality. The part that makes you feel insane is wondering a) whether it's normal, and b) if it will ever be different, will I ever feel 'right' again?

You have to remember, 'sleep' for me already means something different than it does for the average Joe. First, I put in a sleep-apnea oral appliance that looks like a double retainer, sort of like what you get after the orthodontist takes off your braces, only one for the top teeth and one for the bottom, tied together with a steel pin. The object of this device is to push the jaw (technically called the 'mandible') out, in order to prevent the tongue from falling back into the air passage and stopping me from breathing. Then, to prevent me from breathing through my mouth (I'm what they call a 'mouth breather'), I have to tape my lips together with something. I use 3M Micropore tape because it's for medical purposes and hurts only a little to remove in the morning. Then I put in foam earplugs, because I sleep so lightly that even raindrops on the window will awaken me (as they just did). Then an eye shade because ditto, for light. After all that and 6mg of Melatonin, I hit the hay. And then I pray I'll be able to sleep.

An important factor of successful or even semi-successful sleep is that I start in a good position. I know what you're thinking. Your thinking "Oh, come on Bob, this is true for everybody, including me." But what you don't know is, I have to pick a perfect position because I'm not going to move during the night. Not because I don't want to, but just because I don't. I don't know why, but this is true for people with Parkinson's disease, too. They just don't know how to move while sleeping, apparently. So I will wake up in the same position I went to sleep in. If I'm a little bit off, such as my back is out of alignment, I will have a sore back the next day. Or if the pillow is under my head in the wrong way, it's going to be that way the whole night. I might have a sore neck the next day.

It's also true that for me, and for a typical Parkinson's patients, we don't know how to turn over even when we are awake. Or semi awake. It's almost impossible for me to turn over in bed or to change my position. It's a combination of lack of strength and lack of coordination. It's a little bit like trying to find a word that you can't quite remember. I used to know how to turn over in bed. I used to know how to hold my fork and eat a piece of steak, and how to cut it. But now I can't seem to remember how to do either.

And no, according to brain scans (I've had four), I have not had a stroke. I do have a half dozen small holes in my brain but they are no bigger than the average holes in anyone's brain. So what used to be simple pleasures like this become sort of brainteasers like playing sudoku for doing a crossword puzzle, only infuriating, non-optional, and low on my entertainment scale. I have to remember mechanically, or I have to figure it out on the fly: "Now let's see, how would I get that steak into my mouth if I were human being who had to pick up this fork and hold it and stab the steak and then aim it towards my mouth?" It ends up looking a little awkward, at best. And, it feels totally weird.

This is what Lyme patients have to go through with almost everything they do, and it's called having "brain fog". On a good day, you sense it as just being sort of weird. You feel like molasses in January. You're stuck, you freeze, you forget what you are doing, you even can't remember how to move to pick up your pen. You can't tie your shoe. On a bad day, it's infuriating and you feel rage. "Why me?", you ask. How long will it be this way? Or you just feel rage, with no question at all. It's just anger. It's called "Lyme rage." There is speculation in the medical community that Lyme rage is associated with certain co-infections of Lyme disease such as Babesia or Bartonella. It's probably true. When I was sickest, about nine years ago, I had so much lime rage , It was unbelievable. I had no idea about Lyme rage or what it was. All I know is that I went from being a normal person to wanting to strangle even my best friends. But it's not as bad as it was then.

But I'm straying from my point. My point was about the ritual I have to go through to go to sleep at night. So you can imagine what it looks like, my head has earplugs, taped lips, eye mask and I get into bed, lie flat on my back and straighten myself out totally so that I'm as ergonomically correct as possible. Then I turn off the lights -- if I can reach the lamp, which often I cannot.

You're probably wondering or asking yourself "Well, you can type this in the middle of the night, can't you?" Actually, I'm sitting here like a shaking rock, talking into my iPad. The iPad is typing what I say through the magic of the Dragon Dictation application that is running on it. All I can do is tap the screen and talk. My right arm is banging against my body at that telltale 8 cps speed and is rigid. I'm sitting crosslegged on my bed at 4:14 in the morning, talking into a computer, trying to let the world know that other people are not alone if they're having in an experience like this. This is the best thing I can think of to do right now. Other people in the neighborhood are blissfully asleep in their houses, I presume. Maybe they are dreaming. Maybe they are dreaming happy dreams. Personally, I can't remember the last time I had a happy dream. A couple of nights ago I had a dream where, like Persephone, I was trapped underground under the crusty surface shell of the Gaia, agitatedly wandering about, not being able to get out. Mostly though, I don't remember my dreams. Maybe that's a good thing.

Getting back to the fact that I woke up at an expected time, I was aware that I was in a vague state of confusion about what I should do. After a minute or so, I realized I should take my pulse because I was feeling a very intense feeling in my heart. Trembling. Sure enough, even though what I was feeling in my chest was the telltale 8 cps shaking, my pulse was actually high. You see, except for one nurse who heard the trembling in my heart once in her stethoscope, no EKG tests have been able to detect it. It's just something that I feel. People can see the tremor in my hand or in my feet, but they cannot seem to detect it in my heart. I was surprised when the nurse heard something and said "Hey, what's this trembling sound I hear in my stethoscope?" I said "Denise, even the EKG could not detect that. They did not believe me when I told them that I feel it all the time."

In any case, I decided I should turn on the light, get up, go upstairs, get my blood pressure meter, and my thermometer and take my vitals.

What did I find? The usual. Another reason to wonder if I'm crazy or not. Blood pressure: 103/72. Pulse: 83. Pretty normal. Well, 83 is fast for sleeping. It's not out of line if you're having a dream. But, lying quietly should not be 83. My resting pulse used to be 65 or so. Sometimes even slower. But now it is quite quick. Almost all the time. Between 72 and 90. And I can't do something that most people can do which is called "make yourself comfortable." I used to be very comfortable almost all of the time. And why not? After 35 years of practicing meditation and other relaxation techniques, I certainly knew how to "make myself comfortable." But now, no position is comfortable. How can you be comfortable when your muscles jam up like a rock and your toes are shaking and cramping and your stomach is tight and your heart is pounding? And your hand turns into a claw when you're trying to eat an enchilada. Or just hold a regular expression on your face while talking to someone who doesn't know that internally you're shaking like you're afraid you're about to die or that you might actually die any minute or at you might fall apart right there in the Nation's hamburger store on main street in Alameda, while you're eating a piece of Apple pie and talking about religion with a friend. And that's the same feeling I had when I woke up an hour and a half ago, before I started writing this. Am I going to die now?

They say that the cause of posttraumatic stress disorder is going through a traumatic experience like an explosion in a war zone. Somethin dramatic. But another definition of it is low-grade continual, repeated stress. Like being an incest survivor, or a Holocaust survivor or even surviving the oppression of a stressful workplace. I had a client when I was a psychotherapist who had a job as a TSA operator employee whom I believe is suffering from posttraumatic stress disorder as a result of job pressures. She suffered on the job, constantly worrying whether someone who just walked by her was carrying a bomb. Or might be. She wasn't allowed to go to the bathroom for fear that someone might walk by who was the next terrorist and blow up a plane, and she'd be responsible. Well, it's about like that. Waking up every morning wondering if I am going to be much worse today, how the disease is progressing, how much brain damage is permanent, how much is temporary? Questions like that are everyday realities for people with a chronic disease. I'm not claiming to be unique. But having two diseases with unknown causes and unknown cures, and especially having one that the medical system claims almost doesn't even exist and the insurance system won't pay for is pretty crazy making.

And then there are the financial worries. I have already spent the better part of my retirement money trying to figure out a cure for this disease that continues to worsen and erode my sense of self confidence. I have spent nine years being out of work, seeing doctors, making the best out of life while being sick, trying to reinvent myself, going back to school and getting a masters degree in psychology, thinking it's all psychological (which it is not), and trying to be a trooper. I have pretty much given up being in a relationship because that is just about impossible with a disease like this. Well, at least for a single person. I envy the people with Lyme disease who have a mate to help them through this. Ditto that for Parkinson's. There's nothing like going on a first date for "dinner and a movie". where you can can't eat, and you can barely sit still in the movie theater.
Unless you're going shopping for an partner in a chronic disease support group, it's kind of awkward starting your first date saying, "Oh, me? Well I have this weird disease called Lyme disease that can look like between 200 and 300 different kinds of diseases", or "I have Parkinson's disease which is a degenerative neurological disorder that is sometimes fatal but always degenerative and there is no known cure. Oh, and if it is Lyme disease, there is speculation that it is sexually transmissible, kind of like Syphillus." It's not exactly a conversation starter. But if you have a party with too many people in your house and you'd like to empty the room it's a pretty good tactic.

Well, sorry, I didn't mean to make this entry sound like a pity party. But I guess I am feeling pretty miserable tonight. I just took a Valium, so I might get some sleep after all. In the meantime, I promise to make the tone of the next entry more upbeat. There have been some bright spots in all this, and I have been thinking about those more lately. I'll try to elaborate when I'm feeling a little bit more positive.

Signing off.
Your Lyme disease correspondent from the field,
Bob Cowart

Robert (Bob) Cowart is one of the best-known writers of books about computing, having authored over 45 titles, with over a million copies sold worldwide in over 15 languages. He is also a psychotherapist intern graduate of the California Institute of Integral Studies (CIIS) in San Francisco. Robert has had Lyme disease for an estimated 40 years, and was diagnosed in 2006. He was diagnosed with Parkinson's disease in 2009. He has been unable to write since 2002 when he fell sick for the third time in his life. He is (was) also a pianist, bassist, and concert promoter and impresario. He founded and hosted Hillside Concerts, a classical, jazz, and world music concert series in Berkeley running for the last 19 years. All of these activities have had to be suspended due to symptoms of neurological Lyme Disease. He is currently applying for Social Security Disability Insurance.

Please visit his blog at http://bobcowart.blogspot.com
He can be reached through email at bob@cowart.com

If You Give a Lymie Some Laundry

2011-04-26T16:47:00.000-07:00

Written by Lyme is Real, a SpiroChicks' contributor, in the style of Laura Numeroff's "If You Give a Mouse a Cookie"

If you give a Lymie some laundry,
chances are when she goes downstairs,
she'll see a large bin with unused shoes which will remind her that
the elementary school is having a shoe drive for Souls4Soles.

As she looks through the bin, she'll see dress shoes,
but will forget if the drive is only for tennis shoes
so she will head upstairs to look for the memo,
forgetting to add a load of laundry.

She will see her phone,
which will remind her of a friend she wanted to call.
As she sifts through a kitchen drawer looking for an old phone directory
from when she was well enough to teach,
she'll find postage stamps of varying amounts, unsent greeting cards, paper clips, garden seeds, DVDs, business cards, menus, screwdrivers and other miscellaneous misfits.
She will decide to clean the drawer.
When she gets to the bottom of the drawer, she still hasn't found the number she was looking for
and her counter and table tops are now a mess.

Realizing it is lunchtime,
she begins to poach an egg.
Her daughter will ask for one.
When she is unsuccessful in her search for the baking dish,
her daughter will gently remind her to check the microwave,
where she will find the egg she made for yourself, but forgot to eat.

When she sits down to eat the egg, she will see the computer
which will remind her that she still would like to call her friend.
She will Google her friend's name and find her on Facebook.
but will be distracted by everyone's status updates.
Eventually she will remember to send a friend request.
Fortunately, her friend "friends" her and sends a phone number.
She calls and a they plan a time to meet.

Thinking this might be a fun blog entry, she sits to type at the table, among the piles of greeting cards, postage stamps and other miscellaneous misfits, and thinks to herself,
Tuesday at 10am. Now, if only she can remember to meet her friend on Tuesday
and what will she wear?

Coming Out of the (Lyme) Closet

2011-04-11T14:07:00.000-07:00

By Ozone Amanda, Spirochicks Contributor

Jessica Ingersoll-Cope always kept her illness “closeted”, known only to her close friends and family. As a professional dancer, who had to stop working when an undiagnosed lyme infection disabled her, she felt confused, upset, and lost when her body stopped keeping up with her. Since so much of her life had been defined by “doing” and movement, her mysterious illness caused her to suffer a crisis of identity. (Most lyme sufferers will probably find this relatable.)

Jessica's new, fourteen-minute film, Forms of Identification, began as a conversation with a filmmaker best friend, and as a way for her to hold onto her dancer and performer self. But, as the three-year production process stretched along, the film became more about conveying the universality of loss and emphasizing the connection of her personal journey to a larger, communal struggle.

“There are so many definitions of loss,” Jessica says, “whether it be due to death, divorce, retirement, illness…At some point, everyone will experience profound loss.” In Forms of Identification, she uses her body to convey lethargy, exhaustion, and the disjointed feeling of self that loss leaves in its void. Jessica’s dancing is overlain with medical lyme definitions, footage of her pre-sickness art, and somewhat-eerie treatment scenes.

While the theme of the video is relatable to a broad spectrum of society, Forms of Identification is also a highly personal story. Jessica was originally very reticent about sharing details of her personal life with such a public audience. Having “closeted” her illness for years, she not only didn’t want to share personal details, she wasn’t sure she wanted the film to specify illness as the cause of her despair. But, for the viewer, the film’s poignancy of feeling and the power of Jessica’s filmed movement stem from this personalization.

Kristin Tieche, her co-producer and filmmaker friend, eventually convinced her to share personal details, as well as her dancing. The result has been surprising and moving for Jessica. As the two began screening the film, audience members and fellow lyme sufferers began to tell Jessica what her dancing and film had meant to them and their own stories. Jessica says these connections made her realize that this experience and film was not just about her—that they were part of something larger.

Kristin and Jessica have entered Forms of Identification into a number of festivals—including Dance Camera West (LA), Marbella International Film Fest (Spain), and Chicago Reel Shorts—and have plans to submit to many more. But, for Jessica, the journey has mostly been about learning. Working with Kristin, she learned a great deal about filmmaking. Now, she says she has also gained from a sense of solidarity that the act of sharing her story with others has fostered—“It has been a very healing experience,” she adds. Jessica may still have a long way to go, but she is glad to know she has company.

To learn more about Jessica and the film, check out the Forms of Identification blogpage at: http://www.formsofidentification.blogspot.com/ Healing thoughts to all!

Goldilocks and The 3 Organic Shampoos

2011-04-07T18:40:00.000-07:00

By Candice

Part of the Infectiously Optimistic "Organic Goldilocks" Series.

There once was a girl who loved MAC cosmetics, all things vanilla fragranced, and shampoo straight from the salon shelf.

Then she developed Multiple Chemical Sensitivity.

So, she became the Goldilocks of organic cosmetics.

Multiple Chemical Sensitivity (MCS) is characterized by the development of multiple symptoms in multiple organ systems upon exposure to chemicals at or below previously tolerated levels. (1)

In layman's terms, MCS is the inability to tolerate the now "average" chemicals that we encounter in our environment on a day to day basis. Your head may begin to throb while you're standing in line in the grocery store next to a woman who smells of fabric softener. Your lungs may begin to constrict when you breathe in the drifting fragrance from your roommate's recently used hair products, or you may feel weak and faint while visiting a house that's full of scented glade plug-ins.

This is often a secondary condition to a number of different illnesses that cause the body to be overburdened by toxin or infection. Late stage lyme patients, cancer patients undergoing chemotherapy or radiation, and those exposed to toxic mold are amongst those who are often affected.

Yet, those with Multiple Chemical Sensitivity are not the only ones who should be concerned about the health effects of synthetic, fragranced, and chemical based products.

In 2004, a study done by the Environmental Working Group reported that the average adult uses 9 personal care products per day, exposing them to an average of 126 different chemicals daily. (2)

In the study, one third of the conventional, "average" products tested contained at least one ingredient that has been classified as a cancer-causing human carcinogen.

Almost 70% of the products were found to have potentially tainted ingredients linked to cancer and other serious health complications.

54% actually violated safety recommendations set by the Cosmetic Safety Review Board.

According to Skin Deep's Cosmetic Safety Database, no safety testing is required and manufacturers are free to use almost any manmade material as a cosmetic ingredient. (3) Thus, conventional beauty products are brimming with chemicals that have been directly linked to immunotoxicity, endocrine disruption, reproductive dysfunction, organ toxicity and cancer. Check out the database to look up what you're using and to see what you're specifically putting on your body.

My rule is if you can't pronounce it, and you wouldn't swallow it, then don't put it on your body. What the heck is P-Phenylenediamine anyway? It definitely doesn't sound like something I'd want to drizzle on my salad...or smooth over my skin.

Organic Goldilock's 3 Shampoos

Once I ditched my toxic salon products, my body started to do a bit better. My mind felt clearer, I stopped feeling like someone was smothering me with a pillow all day, and the pressure in my head significantly improved. But what's a girl to do when she's got a head full of curly hair? You can't just use any shampoo, or you'll find yourself waking up to an afro bigger than Lenny Kravitz'.

The first shampoo I dared to try on my curly 'fro was:

Aubrey Organics Island Naturals Replenishing Shampoo

I used Aubrey's awesome Hair Type Matrix to figure out which shampoo and conditioner would be right for my curls. I chose to go with something for frizzy/flyaway hair that tends to be try.

The shampoo smelled great, but not in that over-powering "wow, there must be a perfumed woman hanging out inside of my shampoo bottle" sort of way. The essential oils in the shampoo give it a nice, light, natural fragrance. When using it for the first time, I was a little disappointed though at the consistency and its lack of lather. After a couple of weeks of use, I loved the way my hair smelled, but it seemed to make my hair too oily.

I would recommend the shampoo for someone with extremely dry hair. I don't personally qualify. If your hair is quite dried out, you might be able get the shampoo to "stick then rinse" a little better during wash, and you may come out with soft shine instead of weighed down oil. It would probably work best for those of African American decent.

Organic Goldilock's consensus: Lovely smell, but a little too runny.

Now that my hair began to verge on the "bit too oily" side, I did some research and found a product that is known to be good for those with oily hair:

Giovanni's Eco Chic 50:50 Balanced Shampoo

Despite the website's assertion that this product is ideal for normal to dry hair, I had read online elsewhere that it tended to dry out dry hair further, and was actually better for those with excess oil. It turns out, the folks online were spot on.

This shampoo made my hair feel great. My curls were no longer weighed down, but my hair didn't feel dry or like a broomstick hanging from the top of my head. It was a nice balance. Unfortunately though, despite the natural ingredients of Giovanni's shampoo, the smell that wafts from the bottle (and the bathroom when you shower) is quite strong. It isn't a toxic smell, but the florals in the product are intense. Personally, a little too intense for me. After a while, I began to desire something with a softer aroma.

I should probably also note that the people that I was living with at the time also used this shampoo, and complained that their hair started to feel too dry. This wasn't the case for me, but since they both had color treated hair, I do see how this could be an issue.

Organic Goldilock's consensus: Great for my hair, but a little too smelly.

Which brings me to my third organic shampoo trial:

Kiss My Face's Whenever Shampoo

I guess they aren't joking when they say that this shampoo is "appropriate for all hair types"! My roommate and I both have completely opposite hair. Her hair is bone straight, and mine is quite curly, but we both use this shampoo, and both have come to really like it.

The natural scent is fabulously mild, but quite nice. The texture of the shampoo is great as well, and doesn't slip through your fingers as you try to lather. It leaves my hair soft but doesn't weigh down my curls, and it does help control flyaways and frizz as it mentions on their site. Way to go, Kiss My Face!

Organic Goldilock's consensus: For my head of hair, just right!

So, don't be afraid to ditch the chemicals. After a bit of trial and error, you'll find what's just right for you as well. If your hair is dry and unruly, give Aubrey a shot. If your hair is oily and limp, give Giovanni a shot. But if you've got a combination of it all, try out Kiss My Face.

Shampoos that this Organic Goldilocks would like to try next:

1. John Masters Organic

2. Max Green Alchemy

3. EO

Organic Goldilocks Tip: If your hair tends to dry frizzy and feels brittle, put a little unrefined coconut oil on your fingertips and smooth it through. It'll give your hair a little extra shine and will control any fly aways. Plus, you'll smell great too!

1. http://www.mcsrr.org/factsheets/What%20is%20MCS.pdf

2. articles.mercola.com/sites/articles/archive/2004/07/17/dangerous-cosmetics.aspx

3. http://www.cosmeticsdatabase.com/research/whythismatters.php

MayDay Lyme Awareness Shirts

2011-04-06T09:53:00.000-07:00

Lyme Disease Awareness T-shirt

Lyme Disease Awareness Month is right
around the corner!

During May and beyond, wear this lime green “UNITING TO FIGHT” tee.
Show solidarity, and draw attention to the serious issues
that Lyme patients deal with every single day.

$1 from every sale will be donated to the MAYDAY Lyme Rally, planned for May 21 in Washington, D.C.. Information on the event can be found here: https://www.facebook.com/event.php?eid=192479750772651&ref=ts

All orders must be placed by April 15th

Ready to purchase your shirt??? Follow this link – http://visualyme.blogspot.com/2011/04/lyme-disease-awareness-t-shirt.html

If you prefer to pay by check, send it to:

Debra Rice
PO Box 7110
Richmond VA 23221

Tees will be shipped out to you by May 10th.

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The Solo

2011-03-31T09:15:00.000-07:00

Lyme is Real, Spirochicks contributor

Imagine you are thirteen. Lyme spirochetes have invaded your spine and you are living each day with severe pain. They've also invaded your brain making it difficult to remember. You're wrestling with horrible headaches. The new medications are working, but your body is experiencing deep fatigue as it works to handle the infection and dying bacteria. You are herxing, causing symptoms to flare. You want to stay in bed.

But remember! You are thirteen. You're in the eighth grade. Singing, dancing, band, musicals, family, friends, school and teachers are your loves. They're the reason you pull yourself from bed each day, even the days that are the hardest you've yet to face. And then, of course there's the solo.

A solo in a band that has received straight ones for the past thirty-five years. Festival is fast approaching and your solo continues to be a challenge. You play the oboe. You're wrestling with reeds. Your best one gives out one day in rehearsal, right in the middle of your solo, shaking your confidence. Your parents send for more, but they're held up in a snowstorm for several days. They arrive just before the pre-festival concert. The bands combine and you're now playing with even more peers. Stress builds even more. We all know how stress affects Lyme. It becomes even harder for you to function. Your mother is questioning her own decision years ago, to encourage you to play the oboe.

You are strong. You don't give up. Your directors continue to inspire and help you. A dear friend comes over before school for more lessons. A wise director tells you the band's rating will not be affected by your solo. The new medication starts working its magic. The cranial-sacral massages are lifting you out of the pain cycle you are in. You play well at the pre-festival concert in front of the parents and your confidence grows. For the next two weeks, you continue to work. You add vibrato and on the day of the concert, the notes bring tears to the eyes of those who love you as they think of all you've accomplished. What you've overcome.

Then the judge steps in front of the audience to talk with your band. He asks you all to look at measure 19 in the second piece. "Where is the oboe player?" he asks.

Hearts skip a beat. You raise your hand. He asks the others to musically step out of your way. He wants your notes to carry through the auditorium, at the same time reassuring you that he could hear you the first time. He wants the piece to be even more beautiful. You play it through again.

Today you learned the joy that can be gained when you face your demons. By daring to dream, you had the courage to soar. You are such an inspiration!!!

Guest Post::Tips to Help Prevent Your Dog from Getting Lyme Disease

2011-03-13T19:42:00.000-07:00

By Guest SpiroChick, Susan Figurski

Being a fellow Spiro Chick the one thing I have definitely noticed among others in the Lyme community is our love for animals. Some would say I am an animal fanatic, and I don't mind that description one bit since it is well known that 'the heart of a person is judged by their treatment of animals', so in my mind I must have a HUGE heart. But seriously, there is no feeling in the world like being in the same presence as an animal especially the crazy and adorable antics of a dog.

To say that I have a love for dogs is understatement, as you can see by this picture where I'm just about attacking this little King Charles Cavalier. I have to admit, when I first saw this picture I was a little embarrassed , but then I laughed out loud because this picture had captured exactly what I was feeling at that moment, such happiness and excitement, I wanted to eat him up and clearly I almost did!!!

Most likely if you are reading this article then you are painfully aware that a person can get Lyme from quite a few different vectors and that it is not just contained to the teeny tiny deer tick. I actually contracted Lyme from a dog tick after just 2 months from starting my dream dog grooming business. I thought it would be great way to work with dogs on a daily business and it was, until the day that dreaded dog tick infected me with its poison. This dog tick didn't come from a mangy mutt, but from a show dog that lived in an upscale gated community located directly on a golf course which backed up to a nature preserve, we all know how Lyme doesn't discriminate.

I learned a great deal working in the animal industry including how dogs are susceptible to many diseases that inflict humans, including Lyme. With that being said I would like to help keep your furry four legged friend safe from ticks as well as what to do if you suspect your dog may have been bitten by a tick that was infected with Lyme.

If you find a tick on your dog you will need to protect yourself from any diseases it may be carrying so grab a pair of latex gloves. The recommended tool to remove a tick is a pair of hemostats, a surgical tool that can be purchased from any dog supply store but if you don't have these on hand, no worries a good old pair of tweezers will do. Using a match or Vaseline to try and 'coax' the tick out will only enrage it and make it embed further into the dog's skin.

The best way to remove a tick is by grabbing the head as close to the dogs skin as possible and then very slowly pull it straight out. Be certain NOT to squeeze the tick as this will cause the tick to release more toxins into your dog making him more susceptible to disease. Once the tick is completely removed place it into a container filled with rubbing alcohol to not only kill the tick but also keep it secure in case you see any signs of illness in your dog down the road.

Lyme disease symptoms to watch for in your dog include:

* A fever between 103 and 105 degrees

* Lameness which appears suddenly

* Swelling in joints that moves from one leg to another

* Swollen lymph glands

* Lethargy

* Loss of appetite

If your dog starts to project one or more of these symptoms, especially if you recently removed a tick from your dog within a 3 month period, be sure to ask your Veterinarian for a Lyme test as soon as possible. If Lyme is caught early treatment is simple and successful, we all know how familiar and true that statement is. To keep your dog free from Lyme check him on a regular basis all year round no matter what part of the country you may live. There are many different tick preventatives on the market that come in both topical and oral forms so be sure to discuss these options with your Veterinarian as to which would be the best fit for your dog.

If you enjoyed this piece about keeping your dog safe from ticks and you would like to read more dog related articles like this please visit my Examiner.com page

If you click on the subscribe button it will automatically email you alerts to let you know when I write my next article. By the way I was horribly ill that day my profile picture was taken, it was definitely a “fake it till you make it” type of day, which I know so many of you can relate to.

The Perfectly Abnormal Condo

2011-03-09T17:13:00.000-08:00

By Candice, SpiroChicks Contributer

This past weekend, I paid a visit to my Grandparents’ house. When you’re chronically sick with a rather complex disease, packing for even a short trip can be quite the feat. Though it took a terribly long time to accomplish packing myself up, I was proud of the fact that I made it through the process in once piece, and that I had condensed my belongings to what seemed to me like a measly one suitcase, six cloth shopping bags, a garbage bag and a small laundry basket. Yet to my surprise, upon arriving to pick me up, my Grandparents marveled at the amount of things that were coming along with me.

“How could such a little girl need so many things?” My Grandma said with a smile, as she gazed wide-eyed at my pile of loot.

“After we’re done loading your bags into the car, I hope there’s still room left to bring you too!”

I followed her stare back to my belongings and scratched my head. It didn’t seem so bad, considering that when I’m preparing to take a day trip to visit my doctor every week, I pack as though I plan to move into his office. This was the first sign that while I’ve been living with another lyme patient, I’ve gotten a little too used to being perfectly abnormal.

Fellow SpiroChick and lyme patient, Ashley, and I have been roommates for over one month now. It’s been a pretty fantastic experience. We’ve of course hit many of the trials and tribulations of both life and of being a Late Stage Lyme patient, but we’ve taken on those obstacles together. Living with someone who’s had to adapt to the same lifestyle that you have, and who has battled the same battle that you fight on a daily basis, provides an invaluable sense of understanding and comfort. It’s also quite possible that it provides a false sense of normalcy. To us, our daily routine now feels “average”, because both of us live it out together under the same roof. When in reality, we might as well be living on Mars.

We often joke that we’re never going to be able to find men that are going to want to date us, considering our odd acquired habits and rituals. After all, how many guys would be thrilled to come home to a girlfriend doing yoga on the living room floor while she’s got a pot of millet steaming on the kitchen stove? A magic eight ball would probably tell me “outlook not so good”.

Yet, I love it. I love our perfectly abnormal life. A year or so ago though, I used to resent it a little. My daily life would feel as though the world was spinning on around me while I was stuck stagnantly in place, trapped in some alternate reality. Now I realize though that your world is what you make it. My world may be small, full of monumental obstacles, and entirely stripped of what it used to be, but it was never going to grow if I didn’t accept it. Once I did, I found that though my world is quite difficult and far from normal, it’s unique, and there are still plenty of opportunities to enjoy it. That is, if you’re looking in the right places.

It’s far easier to fair when you’re living with someone whose reality resembles your own. While I stood in my Grandmother’s kitchen this weekend, she looked on apologetically with a crinkled nose, as I prepared a glass of liquid medication and counted out the smelly drops as they fell from the dropper.

“It must be wonderful to have a roommate who has to do these kinds of things too.” she said. I nodded in complete agreement.

“Nana, off of the top of my head, I could probably think of 15 reasons why living with another late stage lyme patient has been nothing short of fabulous.”

15 Reasons Why Two Late Stage Lyme Patients Make Fabulously Strange Roommates

1. Most average roommates have designated cupboards for alcohol, or for easy-to-prepare foods like hamburger helper or macaroni and cheese. Instead, you and your roommate each have entire shelves sectioned off for pills, potions, and medication. Your easy to prepare “go-to food” cabinet consists of cans of organic white beans and jars of raw sesame seed butter.

2. Lyme patients often have to set alarms in order to wake up on time, remember to take pills, or to assure they eat enough throughout the day. When two patients live together though, you can double as both roommates and walking, talking alarm clocks. You typically know when it’s getting to be late and your roommate hasn’t taken her adrenal medication yet, and she also knows that it’s time to eat again when she starts to smell your brussel sprouts steaming from two rooms away.

3. With all of the cabbage, cauliflower, broccoli and brussel sprouts that you both typically steam, the average person might walk into your house and think it smells like the dog has some pretty gnarly gas. But when your roommate comes home from the grocery store and gets a whiff of a cruciferous veggie steaming, she drops everything and starts cooking too, because beef and cabbage sounds like its going to hit the spot.

4. You and your roommate both know “the face”. You know, that face that you get when your brain starts to feel like it’s full of hot wax and cotton balls. When you have company over and one of you starts to glaze over and zone out, the other picks up on it pronto and takes over the conversation. Typically, “the face” goes unnoticed by guests and “normal” folks. They just think you’re just quite an intent listener.

5. Your roommate doesn’t think it’s weird that you constantly feel motivated to go lay flat on the front lawn. In fact, she encourages it, and will lay out there with you despite the status of the weather reports. There’s even a name for it: Earthing. Your neighbors probably half expect you both to start hugging trees, but it’s all good.

6. You both sort of instinctively know what might be helpful to one another. When your roommate throws out her back, you know how long her hot rice pack takes to heat in the microwave. When you're packing to head out to the doctor, you know what to throw in your snack bag for her in case she gets hungry too. When she's got somewhere to be and she's running short on time, you know how to cook the lunch she was hoping to pack. Whereas asking just anyone to do such things might be a little overwhelming if they aren't fluent in "lyme patient".

7. Your roommate knows that when she catches you lathering up your arms and legs with the same coconut oil you just cooked your veggies in, you’re not planning to roast yourself too. To the both of you, cooking oil doubles as a perfectly acceptable organic body lotion.

8. When you open up the gnarly bottle of pills that makes your kitchen smell like stinky feet, your roommate doesn’t cringe and check to see if something curled up and died in your garbage disposal. Instead, she hurries to the cupboard because the pungent smell reminds her that it’s time to take her afternoon dose of pills too.

9. When you send out a friend or a family member to pick up some groceries for you at Whole Foods, you typically have to set aside 15 minutes to explain things like what swiss chard looks like, how to pronounce “quinoa”, and which aisle you might find gluten free oats. But when you hand your roommate your grocery list, she glances at it, then merely asks, “Rainbow chard or red? I like rainbow, myself.”

10. Instead of rolling her eyes every time some off-the-wall thing makes you sick, your roommate can often warn you before it even happens. If you’re on a walk and she breathes a whiff of gasoline before you do, she responds with a “quick, cover your nose!”. If she’d been two seconds later, she’d probably would have had to peel you off of the sidewalk. But if that had indeed happened, she wouldn’t have griped about that either.

11. While most of the population believes that a scoop of vanilla ice cream is the ingredient that completes a fruit smoothie, you and your roommate think that a beverage isn’t perfectly blended until you’ve added an avocado. Most might scoff at adding anything green to their milkshake (unless it were mint chip ice cream), but you both don’t consider it to be complete if you haven’t.

12. While alternative healing therapies and the notion of “detox” seem outlandish to others, you both fully embrace them. At this rate, between her unconventional use of organic coffee and your use of a neti pot, you two are bound to make Roto Rooter jealous.

13. When the guy who's installing your new furnace comes in to test it out, he ends up sticking around for a while and chatting with you both, because he thinks you're intriguing. He then proceeds to ask what the lime green awareness bracelets that are sitting on your dining room table are for, and when you tell him, he asks if he can buy a few. He informs you that you both have a "righteous positive energy".

14. You and your roommate are oddly able to laugh during occurrences that most of the general public would find quite unnerving. When your heart starts going into strings of irregular heartbeats and your blood pressure cuff starts flashing all sorts of different abnormal codes and symbols, she doesn't get frustrated or anxious as she drives you to the doctor. Instead, you find things to laugh about on the way there, and you both even manage a giggle when you're forced to inch out of the car as though you're 112 years old.

15. When you wake up and tell you're having a bad morning, you roommate can actually fathom what that might mean. She doesn't think that "bad" might equate to feeling tired, achey, or sick to your stomach. She knows what this kind of sick feels like, because she understands what it's like to have every organ in your body affected by an infectious disease. And when she nods and tells you that she's sorry, she really, truly means it.

My life is challenging, unique, odd, timultuous, fascinating, and completely out of the ordinary. Yet I've come to discover that though I don't have a choice in what my life may look like right now, I can choose whether or not I'm going to accept it, and it's up to me to decide if I'm going to love it or hate it. Despite the hardship and lack of normalcy, I've chosen to love it. Living with another patient who has made the same commitment makes that choice a whole lot easier. Ashley and I live in a perfectly abnormal condo, and I've loved (almost) every minute of it.

Is your household perfectly abnormal too? Well then, rock on.

I Don't Want a Band-Aid

2011-03-02T06:16:00.000-08:00

By Ozone Amanda, SpiroChicks Contributor

I’m tired of my doctor being my drug dealer. Where is my doctor?

Put away the prescription pad! I know some of you out there rely on antibiotics for treatment and I believe in using whatever works for you. But, I’m tired of doctors ignoring the state of my overall health and simply handing me little squares of papers for lyme-related pain, fatigue, and depression.

For years before I was diagnosed, I saw a series of doctors who had no recourse but their pads. I don’t believe they were insincere or uncaring, but they did little to accomplish what I saw as their main role: helping me figure out the root of my health problems.

I would sit on white paper-covered tables and they would ask me about my symptoms and then hand me a prescription to address each one. I’d protest that, for instance, I didn’t want to just mask the pain because that wouldn’t make it go away and I didn’t want to be taking medication for it everyday, indefinitely...Rather, I wanted to know what was wrong. The doctor said my problems stemmed from a “physical manifestation of psychological stress” and I should just use the prescription on “particularly bad days.” But, everyday was bad. And, my pain was connected to my lethargy and an overall feeling of ill health. What would the medication do for that? Answer: there’s always more medication. Even drugs to counteract the side effects of other drugs.

One doctor actually asked me, pen poised over his prescription pad, “On a scale of 1 to 10, what is an acceptable level of pain for you to live with?” Umm, how about zero? That wasn’t an option, he said. “We all live with some amount of pain.”

This may be heresy to say to the lyme community—and on days when I am really suffering, I will deny I ever said this—but, I am almost grateful to Borrelia burgdorferi (Bb) for changing the way I think about health. When I beat this infection, my body will have accomplished a Herculean feat, but so will my mindset. I used to think doctors understood health and worked to understand the intricacies of causational factors, to uncover and address the root cause of health issues. Now, I realize that a large percentage of the medical community has been educated to think in terms of large “band-aids.” A band-aid for pain, a band-aid for insomnia, a band-aid for depression. I’m not saying that all drugs are useless or unhelpful, or that some people haven’t been helped through some difficult times with the use of prescription drugs. But, it seems to me that, when many doctors ask about your problems or symptoms, they almost inevitably conclude by reaching for their prescription pads. Having a Bb infection has taught me to look past individual symptoms—like hair loss, physical pain, fatigue—and past treating them individually—as unconnected to the rest of me—to see the larger picture.

Don’t worry, though—as helpful as that realization has been, I will never say “thank you” to those infectious, devastating buggers.

Thus happiness is a gift ...

2011-02-27T12:03:00.000-08:00

By Susanne, Spirochicks contributor

Last night we watched Nicholas Nickelby (2002) based on the novel by Charles Dickens. I was so moved by this summation of the story I had to share it.

"No matter how full or empty one’s purse there is tragedy. It is the one promise life always fulfills. Thus happiness is a gift. And the trick is not to expect it but delight in it when it comes. And to share in other people’s store of it."

I think it's easy to forget that in centuries past, hardship was the norm. And it still is the norm in many countries outside our own. We've come to expect the good life: health, wealth, and happiness. I LOVE this quote because it is a reminder that life IS hard. So you better revel in those moments when happiness passes by. It is often easy for me to indulge in life's hardships and over focus on the have not's. But to expect hardship and view happiness as a gift puts an entirely different perspective on life, one that is not mainstream in our culture.

I think "delighting in it when it comes" can take on many forms. For me it's reveling in a moment around the dinner table with my family and we're enjoying some anecdote from the day. Sometimes it's on a long car drive and we share some common experience. Sometimes happiness comes at the expense of tragedy. Like when we hit a dear on the highway and no one was hurt, but we had to have our car towed 150 miles home. I could revel in the fact we were all okay. And we shared a few chuckles at how many husband responded to the shock of hitting a deer who literally jumped into us.

Happiness is often a flash in a moment of my day amidst the challenges of living. Learning to delight in these moments expands my view of happiness. And sharing in these moments with others creates the same sort of expansive happiness. I was born a pessimist. But learning to view happiness as a gift has produced a more authentic joy amidst the challenges of living life with chronic illness and all the typical other hardships of life.

Working on Your Degree to Become a Professional Patient?

2011-02-23T09:59:00.000-08:00

By Amy, Spirochicks Contributor

This is Part II of the Professional Patient articles. For Part I, see Are You a Professional Patient?

This past summer I had an experience that made me stop and consider how my mindset might be affecting my health. I began to wonder, was thinking of myself as a chronically ill person who was constantly researching, discussing, and trying out treatments somehow keeping me that chronically ill person who was always researching, discussing, and trying out yet another treatment? Would changing my mindset to think of myself as a fully recovered person change the outcome? I don't know, but I've been thinking about this for several months now and am beginning to formulate some thoughts which I hope share with you in part III of this series.

In the meantime, since I like to have fun even though I am chronically ill, I thought I'd put together a checklist of a few things that might indicate that you're working toward becoming a Professional Patient. Kind of like those silly tests in women's magazines. Just for fun. I think these are things that so many of us Lymies relate to, so I hope you'll find it entertaining as well.

Signs you may be working on your undergraduate Professional Patient degree:

You diagnose yourself with Lyme disease before your Primary Care Physician even/ever mentions it
Your social life consists primarily of hanging out on the various Lyme boards swapping stories with other Lymies about treatments, herxing, and all your varied, sundry, and yes, often bizarre symptoms
You know the history and the full name of the word “herx” (or soon will)
You spend lots of time looking up new supplements and treatments, looking for things that will help you get well
One of your favorite topics to discuss with family and friends (much to their chagrin) is your health and treatment
You are starting a list of supplements and treatments you might want to consider trying at some point in the future
You have heard of coffee enemas but can’t imagine why anyone would actually do that
You have heard of the gluten-free, casein-free diet but can’t imagine how anyone could do that
You have heard of muscle or energy testing but when you’ve heard how it’s done you’re skeptical, to say the least
You know who Burrascano, Buhner and Klinghardt are, and what IDSA, ILADS and Igenex are
You can explain all these: brain fog, floaters, red crescents, tinnitus, EM rashes, EBV and HHV-6

Signs you may be working on your advanced Professional Patient degree:

At your first appointment with a new doctor they ask if you are an M.D. yourself
You frequently bring in new treatment options to discuss with your non-mainstream, well-versed LLMD and s/he may have heard of it but doesn’t have any experience treating patients with it
Your doctor often tells you that you are the first patient they have doing a particular treatment
You have boxes and boxes of supplements, nearly all of which you have tried and all of which you know what they are for
You are bored when anyone talks about anything other than Lyme disease, treatment options, or your symptoms and you frequently change the subject of conversation back to these topics
You have an active list of supplements/treatments/diets/medical devices you want to try next and you are excited each time you get to start on something new to see how you will react to it
You do regular coffee enemas and have taken to referring to them as your “frenemas”
You have been fully GF/CF for months and months and you don’t EVER cheat because you understand the biology behind avoiding gluten and casein
You are so reliant on muscle/energy testing that you’ve been learning how to do it yourself so you can energy test everything, from foods and supplements, to shampoo, lotion, and make-up, whatever and whenever you want
You can explain all these: HPA axis, methylation, chelation, glutathione, cytokines, XMRV, and c4a

Let me know if you have anything else fun to add to these lists!

Interested in changing your mindset so you don’t end up a Professional Patient for life? Look for my Professional Patient Part III article coming soon!

Are You a Professional Patient?

2011-02-23T09:50:00.000-08:00

By Amy, Spirochicks Contributor

This is Part I of a three part series on being a Professional Patient.

Over the summer I did a series of IV treatments that were extremely grueling and difficult. Every week day for 12 weeks I went to my doctor's office first thing in the morning, waited for up to 2 hours to be seen, spend 1 hour having them get an IV into my overly abused veins, and then spent up to 2 hours waiting for the IV medication to go in. Then I'd go home and feel horrible for a few hours from the medication. All of this took up so much of my day that it was difficult to get anything else done, including eating meals, let alone grocery shopping for my family, for example.

One morning in the middle of this grueling routine, while driving to my doctor's office for another round of all this fun, I realized that I was actually enjoying all of this! How in the world could that be?? It was painful, horrifically expensive, and involved sitting for hours and hours in an office with people who are some of the sickest of the sick. But,I realized that this was the most exciting thing I had done in probably YEARS, it was the most interaction I'd had with other people (and people who "got" me!), and I received a lot of attention from the staff as well as other patients for the ordeal I was going through.

This was totally crazy! I was ENJOYING this whole IV thing, even though it was physically, mentally, emotionally, and financially draining! OMG, I thought. Had I become a professional patient?!?? What did this all mean? Would I never get well? Would I spend all my time in my doctor's office, not socialize with anyone but my doctor's staff, sink all my money and time into treatments for years and years to come? Was this what I had unknowingly become? A professional patient?? This is EXACTLY what I'd always, always told myself I would never become!

A few months after this surprising thought crossed my mind, I was out to dinner with some other Lyme patients. Of course, the topic turned to various treatments and supplements. There is nothing like this topic to get a bunch of Lymies excited and chatting away. We are all so dedicated to finding the next thing that will help us, it always gets us rev'd up. Several people commented that they had a long line of treatments in mind that they wanted to try next, and perhaps they were kind of professional patients. And that's when it hit me. I didn't have a list. For once in the 10+ years of being very sick and working doggedly to learn about every single treatment out there in the hopes of finding the right combination of things to help me recover, for once, I didn't have a single thing in mind to try next, let alone a long list of things to do next. So, I thought, perhaps I'm not a professional patient after all? Perhaps I am ready to move on to the next phase of my life, where I'm not chronically ill and always chasing down the next treatment to do in order to hopefully, eventually, fully recover. In all honestly, after finding myself ENJOYING those IV treatments I did over the summer, this thought comforted me.

But, I wondered, how much do we, at least on some level, keep ourselves from full recovery by being a professional patient?

I had no list of things to try next for awhile there. It's now been about six months now since I was doing those grueling daily IVs, and I have to say that right now, I've got a list of six new things I plan to add into my protocol in the hopes of eventually reaching full recovery. The good news is that these things weren't my idea, but things my doctor wants me to add into my protocol. But, does it matter if it's my list or my doctor's list? Does it put me back into the mindset of the professional patient? My hope, of course, is that these six things get me that much closer to full recovery, and then whether or not I'm a professional patient will be a moot point.

Interested in seeing if you are a Professional Patient? See Part II: Working on Your Degree to Become a Professional Patient?

Test, Baby, Test

2011-02-22T09:00:00.000-08:00

By Ozone Amanda, Spirochicks Contributor.

The December 8^th “Health” section Chicago Tribune article was not true journalism, but an opinion piece. It is a black spot on the Chicago Tribune’s journalistic integrity that it was not labeled as such.

As Paul Raeburn states in his Knight Science Journalism Tracker article, the Tribune article is “what happens when reporters make up their minds about a controversial story before beginning to write.” Raeburn goes on to say that if the Tribune reporters wanted to debate the existence of chronic lyme, that would have been an arguable point. Instead, they drafted a bit of anti-chronic lyme propaganda, complete with the vignette of a patient who believes lyme was manufactured in a government lab.

I say if the media or medical journals want to debate the existence of chronic lyme, bring it on. All of us who suffer know it exists, but scientific debate is the only way conditions and treatments become accepted. With insurance companies, medical authorities, and now, reporters persecuting chronic lyme patients and their doctors, demanding more peer-reviewed, scientific research into the chronic lyme “question” may be the only way to reverse the tide.

Maybe researchers can start by examining lyme testing. Opponents of chronic lyme believe testing proves sufferers do not have lyme, while proponents say testing is deeply flawed. Dr. Klinghardt, a prominent lyme doctor who developed one of the major lyme herbal protocols (and whom Callahan and Tsouderos seem to have ignored in their research), writes: “Bb tends to infect the B-lymphocytes and other components of the immune system that are responsible for creating the antibodies, which are then measured by an ELISA test or Western Blot test. Since antibody production is greatly compromised in infected individuals, it makes no sense to use these tests as the gold standard or benchmark for the presence of Bb (7).” Why not fairly examine this claim?

We cannot let prejudiced reporters pre-empt real research by experimenting with words and quotes as a “journalistic” substitute for labs. Chronic lyme exists. We know it. If you don’t believe it, please go test that theory with something other than opinion.

The Ozone Itch

2011-02-16T10:55:00.000-08:00

Welcome to our newest SpiroChick, Ozone Amanda.

I am itchy all over. I feel waves of irritable, unstoppable heat—they shoot down my arms and make my toes flex with their intensity. Scratchy, maliciously tickly, prickly. But, I refuse to run my fingernails over my skin—like I so desperately want to—because I know it will only make it worse. I’d rather lie here, unsleeping, taunted by my red, bumpy skin, than get some momentary relief only to have the feeling get worse.

It is my second week of ozone sauna treatments and the “rash,” which I was told would result from dead bacteria, viruses and neutralized toxins trying to exit my body through the skin, seems much more menacing than I had imagined.

I’m standing in front of the bathroom mirror now, smearing everything I can think of onto my skin—hydrocortisone cream, radiation burn cream, aloe, a magnetic clay paste. Nothing makes me feel any better. Finally, I run ice-cold water on my wrists to cool down and slump onto the toilet. It’s three am. “Is this really the best way to fight lyme?” I think.

But, then I catch a glimpse of myself in the mirror—a glimpse of my hair. The hair that people used to say made me look like a Pantene Pro-V commercial. The hair that lost its luster and began falling out in earnest around the six-month infection mark, though I didn’t know it then. It fell out until you could see my scalp in every direction, from every angle. And, when I went to have the remaining hairs cut, a hairdresser exclaimed: “Oh, honey! We need to talk!”

The hairdresser gave me scalp treatments and I switched to washing my hair only every few days. I also changed my diet and hair products. But, besides looking like a greasy bum, my hair growth changed very little and my self-esteem fell, along with my overall health.

When I found out years later, that I was infected with lyme disease, I learned that my hair loss was actually a symptom. I began treatment for lyme, but a series of therapies only made me feel worse. After an initial two weeks of having slightly more energy, months on antibiotics eventually wiped me out and left me with awful side effects, like detached and peeling thumbnails. I switched to an herbal protocol and, though there were no side effects, my energy waned and I was soon returned to the couch, with the infection re-surging inside of me. I looked into rife machines, but I was told only certain machines actually worked and I couldn’t figure out which would give me the best chance of success.

Finally, I tried ozone therapy. As I understand it, ozone (or, O3) acts as a kind of natural antibiotic/antiviral. O3 is an unstable compound and, once inside your body, it’s third oxygen molecule breaks off and kills bacteria and viruses, and also combines with the toxins lyme creates in the body, changing their form and neutralizing many of their harmful effects. Using Flood Your Body with Oxygen by Ed McCabe as my guide, I began to ozonate every day.

At the end of the first week, I suddenly realized my three and a half year headache was gone. Actually, until the pain left, I hadn’t even realized I had a headache. A constant level of pain felt so normal to me that I hadn’t remembered that my head could feel any other way.

Now, standing here in front of the mirror, looking at the baby hairs sprouting up all over my scalp, I notice that the bald spots—where I used to attempt a comb over—aren’t really bald anymore.

For me, searching for a lyme treatment that works has been a bit like a Goldilocks experiment, though not nearly as cute. And, undergoing treatment has been just as “fun.” But, I’ve learned to adjust the length and frequency of my current treatments to minimize the side effects, and when my head feels lighter and I look in the mirror, I know it’s worth it.

SpiroChicks does not endorse any treatment. We report them as a jumping-off point for anyone who wants to do more research. Always consult a health professional.

A Valentine's Wish

2011-02-14T07:33:00.000-08:00

Lyme is tough on love. It wreaks havoc with our bodies, our emotions and sometimes our relationships. During marriage, we pledge our love in sickness and in health, but chronic illness, with all of it's stressors, challenges even the strongest of vows.

I am blessed with a patient spouse. One of his greatest gifts has been the gift to sleep when I need it, which is still much of the time. He doesn't worry when the house is a mess, which is most of the time, and appreciates that the energy I do have is shared with our children.

A friend once told me that before you can truly love another, you must first love yourself. Wise words. So on this Valentine's day, my wish for you is simple; to find the strength to love yourself, with all the imperfections of disease. The spirit inside that keeps you fighting is amazing! Celebrate it. You are stronger than your body. You have strength beyond words. Yes, Lyme brings pain, fatigue, brain fog, muscle weakness, rage and anxiety, yet it also brings compassion, courage, patience and hope. Sending you a little Lyme love this Valentine's day!

The Chronic Badass

2011-02-03T13:40:00.000-08:00

Welcome to our newest SpiroChick, Candice of Infectiously Optimistic:

Most 21 year olds roll out of bed in the morning, make a pot of coffee, and hurry off to their scheduled college course or newly obtained part-time job. They may go out to lunch with their best friend, stop at the mall on their way home, or head out in the evening for a night on the town with their typical "crew".

Me, well, my life looks a bit different. I'm a 21 year old Late Stage Lyme patient. I've spent the past two years homebound by the secondary conditions I've developed, Multiple Chemical Sensitivity and Dysautonomia (a condition that affects both the heart and blood pressure). This sounds rather terrible, but in my eyes, I'm still lucky.

In my 21 years of existence, I've learned more than most people learn in their entire lifetime. Instead of attending college as I planned to, and mapping out my own life, my life is being shaped in front of my very own eyes as my struggle for health guides me down a path that I would not have otherwise taken. I've had incredible opportunities to learn invaluable information, to meet some of the most extraordinary people, and to be a part of efforts of incredible impact put together by agencies that are dear to my heart. Through this battle, I'm becoming who I was always meant to be, and I'll end up exactly where I was supposed to go. And somewhere along the way, I became a Chronic Badass.

6 months ago, I wrote an article that went over well with those who are battling chronic illness. I wrote about how difficult life is when a chronic illness turns your familiar world upside down, and every day becomes a fight for life as you once knew it. I asserted that though your life may have become unrecognizable, and may look drastically different than the lives of those around you, you should still be proud of the life that you live. You're a survivor, and as you are being lead down the road that will ultimately lead you to where you are meant to be, you've become a Chronic Badass.

In the article that I wrote, I listed 25 Reasons Why Being a Late Stage Lyme Patient Automatically Makes You a Badass. To my dismay, patients from around the country wrote in and joined the fun. Some reasons quickly became more popular than others, such as...

Reason #1: While some people have a comic book collection or collect rare stamps, you collect infections, and happen to have more than a loaded petri dish.

Reason #4. You've opted to have a portacatheter surgically placed in your chest...while you were awake.

Reason #6. A surgeon has said "Oops" while performing surgery on you...and you were awake to hear it.

Reason #10. You've peed just about every color of the rainbow, except blue.

Reason #11. You've juiced more than 7 vegetables at a time, and drank it. You have the tomato seeds on your ceiling to prove it.

Reason #15. You've had a head to toe rash which elicited a "whoa" from a doctor.

Reason #23. While watching Grey's Anatomy, you realize that you have the same blood pressure as the patient who's excessively bleeding on the screen.

Reason #25. You've been sick every day of your life for more than 4 years and still manage to be optimistic enough, and brave enough, to wake up every morning and do it all again.

I began receiving the most odd, fantastically entertaining emails from patients who had been motivated to look at their battles with lyme in a whole new light. I even had someone write to me reporting that she must be an ultra badass because she once peed blue. I also received a number of requests for "Chronic Badass" t-shirts.

This week, I was given the opportunity to reflect on the 6 months that followed after writing my initial Chronic Badass article. In those 6 months, I faced so many obstacles, but was so imminently blessed, that I was able to lengthen the "badass list" by 5 reasons. An amazing friend also made it possible for me to print 20 chronic badass t-shirts. As this all elapsed in front of my very eyes, I realized that this was all happening for a reason. This is when the list's very last reason became clear to me:

Reason #30: You find a way to pay for treatment with the amazing doctor whom is saving your life. Despite a loss in financial support, you find a way to carry on in your path to a bright, healthy future.

With help from some of the amazing human beings that I've been so fortunate to meet, I was able to set up a "Chronic Badass" t-shirt shop, and currently have a running Chronic Badass auction that was set up in hope to raise funds for my past due medical bills. It would mean the world to me if you could take a look at both the t-shirt shop and the auction. I know that most of the people that this will reach will be people suffering from chronic illness themselves, so if you are not able to contribute, please know that's okay. My ultimate intention of my original article was to let all of you know that I'm proud of you for enduring and surviving what you do each and every day. I hope that the article brought a smile to your face. Please don't ever forget that though your life might be out of the ordinary, it is still extraordinary, and you are irrevocably a Chronic Badass.

Link to the Chronic Badass T-Shirt Shop: http://bit.ly/ex6W5L

Link to the Chronic Badass Auction: http://on.fb.me/ep9tq2

Would the movement to ban perfume, cologne, and candles in public places please commence!

2011-01-20T16:18:00.000-08:00

Seriously! Three times in the last week I've had to leave my workout because someone showed up and started working out next to me .. wearing COLOGNE! Please! Do we need to wear cologne to the gym? I just got a text message from my sis, Kim, saying she's outside in the hall of her dermatologists office because they had candles in the waiting room.

I realize the ban isn't coming any time soon. Meanwhile the degree to which I react to chemicals is getting worse and worse. I no longer am able to sit in upholstered furniture. I'm guessing the scotch guard they spray on fabric has something awful in it. When someone walks in the room wearing cologne I have to leave. I can't wear jewelry, so I feel like the plainest Jane ever. And then candles, I just love burning candles. Yes I started making my own, but it would be nice to buy the pretty ones.

Anyway the point of this rant is to ask you all: how do you do it? Does anyone have any suggestions on how they live in our toxic chemical world. Honestly this bit is driving me crazy and I would just love it if we could all collaborate about how to live here.

New Year's Resolution: Love and Gratitude

2011-01-15T16:39:00.000-08:00

By Kim, SpiroChicks co-founder. Cross-posted to gratitude365.

I first heard about Masaru Emoto back in 2004 when his photographs of water crystals were featured in the documentary, What the Bleep Do We Know. What I remembered from the film was this: water spoken positive words to formed complete, beautiful crystals. Water spoken angry words to formed distorted crystals. The point was: our bodies are 70% water. What are our words doing to us?

I was impressed at the time, thought it interesting, but didn't dig deeper until a few weeks ago. When perusing one of my favorite bookstores, I came across Emoto's bestselling book, "The Hidden Messages in Water" and couldn't put it down. The photographs in the book are impressive in of themselves, but I found his theories on our health and emotions eerily fascinating.

Emoto believes the earth has 108 elements to correspond with Buddhism's 108 earthly desires. Measuring vibrations emitted by different people, he claims that negative vibrations correspond to the vibrations given off by the various elements. "For example, the vibrations created by irritation are equivalent to those of mercury, by anger to those of lead, and by sadness and sorrow to those of aluminum." He points out that science has already made a connection between aluminum and Alzheimer’s (the lonely disease of old age) and we all know the effects of heavy metals on the body.

His answer to our health as individuals--and for our world--is love and gratitude. About photographs of water crystals he says, "The response of water to love and gratitude is nothing less than grandeur," noting that it's both of the words together that create the most beautiful crystals. He says that while the power of love cannot be denied, it needs to be balanced by gratitude. "We must begin by learning what it means to have enough."

My new year's resolution is simply this: to manifest more love and gratitude in my life. Exactly how I'm going to do that is yet to be seen, but I'm going to start by paying more attention to water. The water in my glass, the water in the tub, the water that makes up the bodies of my family and friends. I'll choose my words more carefully. Maybe even say a blessing before a meal, a drink, or a bath.

"When you have become the embodiment of gratitude, think about how pure the water that fills your body will be. When this happens, you yourself, will be a beautiful shining light." -Masaru Emoto

Pamela Weintraub calls the Chicago Tribune article a "sensationalistic hatchet job"

2010-12-09T11:37:00.000-08:00

by Kim Kooyers, SpiroChicks co-founder

I don't even know where to begin with yesterday's Chicago Tribune EDITORIAL. My head is spinning. But while I gain my composure, and work on my own story as Ashley has called us to do (in a nutshell: I would not be able to function or care for my two young children if it weren't for long-term antibiotics). I thought I'd share Pamela Weintraub's response to the article:

Whenever a diagnosis enters the wild west of contested disease, charlatans may prey on the sick--many of whom do not have the disease at all. But to profile this disordered fringe as representative of those on one side of a medical debate while presenting university scientists as representative of the other is biased reporting. In its failure to research the essence of the debate over Lyme disease symptoms that persist after short-term antibiotic treatment, and especially in its failure to interview scientists from mainstream academia to present an alternate viewpoint, this article represents a low in science reporting. This agenda-driven piece rides roughshod over complexities and nuances–and the core ethics of journalism--by implying it has relied on predators for information because legitimate scientists with alternate viewpoints do not exist. I assure you, they do, and would have to be quoted to make this real journalism instead of a sensationalistic hatchet job.

--Pamela Weintraub, Features Editor, Discover Magazine and Author, Cure Unknown: Inside the Lyme Epidemic (Winner of the American Medical Writers Association Book Award, 2009.)

BTW, be sure to check out Lorraine Johnson's response to the article on the CALDA site.

Chicago Tribune Article and Response

2010-12-08T09:56:00.000-08:00

By Ashley Van Tol, SpiroChicks Writer

Today I was quoted in the Chicago Tribune Story Chronic Lyme disease: A dubious diagnosis. The quote came from a post I posted here on SpiroChicks and on Lymenaide in April after the IDSA made their "decision" about the Lyme disease guidelines.

Here is what was quoted from the post IDSA vs. Lymies-

...Egging the IDSA building or somehow infecting the committee members with Lyme sounds great because we are pissed off. However, these are not realistic or appropriate actions.

We need to fight back by telling our story louder than theirs....

In the wake of this latest attack on the validity of our illness, that last line "We need to fight back by telling our story louder than theirs" is once again our best course of action.

Today's Tribune articles drags Lyme doctor's and patients through the mud. Here is an excerpt from the article. Read the entire article here- http://bit.ly/fE9H2k

...Lyme disease is real. The bacterial infection, chiefly transmitted by deer ticks, can cause rashes, swollen joints and inflamed nerves, and usually is curable with a round of antibiotics.

But doctors around the country are telling patients with common medical problems such as back pain, poor concentration and fatigue that their ailments stem from a chronic form of Lyme disease that can evade standard treatment and wreak havoc for years. To fight what they believe is a persistent infection, the doctors often order months or years of intravenous antibiotics, which can cost tens of thousands of dollars.

Strong evidence isn't on their side. But in a golden age of dubious medicine, that doesn't matter.

These days, advocates can raise big money to "Unmask A Cure" for a disease that already has a cure, and doctors disciplined by medical boards are held up as heroes. Legislatures around the country are passing laws to prevent medical boards from disciplining doctors who treat what they consider chronic Lyme with therapies that clinical trials have shown are dangerous and don't work...

It is another kick in the face for Lyme patients and doctors. I said it back in April and I am saying it again today, we can turn this around in our favor. Tell your story. Show them that they don't know what they are talking about. Let's prove to them that they are wrong.

I spent a lot of time on the response I wrote to the article. I wanted to be sure that it was well thought out and clearly illustrated my side of the story. I urge you to do the same. Do not reply with anger and emotion. Plan your response and prove your point with it.

Here is the link to my response to today's article- My Lyme Disease is not the IDSA Lyme Disease.

I sent it to the reporters who wrote the Tribune article. I am working on a response for a letter to the editor. Please note that letters to the editor must be under 400 words, be signed and include contact information, writer's city and state.

Here are the email addresses to send your replies to the Chicago Tribune-

Reporters-
Patricia Callahan - pcallahan@tribune.com
Trine Tsouderos - ttsouderos@tribune.com

Letters to the Editor - ctc-tribletter@tribune.com

The Power of Caring

2010-11-22T09:07:00.001-08:00

I shared this today at Lyme is Real. Recently, I have found comfort in cranial-sacral massage and acupuncture. As I lie on the table, soft music playing in the background, the experience for me is quite spiritual. I have been sick for so long, I feel as though my body has come to know that as its natural rhythm. During each session, I feel my body is gently wakened to a balanced state. I am reminded of how it should be. I am at peace, my breathing easier and I often sleep deeply after a session. In the few days that follow, I feel a boost in energy. I imagine medications working more effectively. It is not permanent. I schedule two sessions a month.

For those of you who have not experienced acupuncture, the needles are tiny and many pokes are nearly painless. A few are bothersome, but the sensation disappears within minutes as endorphins, the body's natural pain killers, flood the area. Once the needles are in place, I rest. The needles are removed and my session concludes with a cranial-sacral massage; the gentlest massage of the cranial region at the base of the skull and the sacral area of the spine.

Our youngest has experienced three sessions of cranial-sacral massage without acupuncture. Each time, she has fallen into a deep sleep during the session, breathing as easily as I've ever seen her. She feels disoriented when waking, though the time has decreased with each session and it no longer frightens her. Her last session, she ran ahead of me to her appointment, in the door before I. It helps that we place ourselves in the hands of one of the most caring and gentle women I've met when we walk through the door. The visits have been a blessing, but became even more precious when our daughter noticed I was struggling with a headache a few days ago.

"Mom, would you like a caring massage?"

She gently took my head in her hands. My heart melted. Last night her older sister was hurting. Her solution? Another caring massage, remembering each soothing detail as she administered comfort. Her sister went off to bed with a smile on her face. We all did.

This Thanksgiving, our family is grateful for the gift of caring shared by so many who have touched our lives. When it comes to Lyme disease, it often takes courage to care, and to those who have the courage to make a difference in the lives of others, we are especially grateful! Wishing you and your family a blessed holiday!

So grateful for my Lyme friends

2010-11-20T13:28:00.000-08:00

by Kim Kooyers, SpiroChicks co-founder. Cross posted to gratitude365.

Last Friday night, I had the most amazing pre-Thanksgiving group-dinner (I can't stand the word potluck) with a few SpiroChicks and friends, to whom I am incredibly grateful just because of who they are: people like me--struggling with Lyme--that you don't have to explain anything to (especially your diet) and genuinly want to hear about the latest health gizmo.

We had a special guest, a practitioner in the Lyme community, join us. Over dinner, I was saying something about how when we're better, we'll be "Wholechicks" (Alix deserves the credit for coining that one). Our guest told us that we already were so powerful. We didn't have to wait until we were well to be "WholeChicks."

A flood of emotion came over me and I cried. I wish I could remember the exact words that touched me so deeply, so that I could repeat them to others struggling with chronic illness. Because in that moment, I felt truly "seen." Not as the parent who doesn’t volunteer much; the mom that is too tired to play baseball/soccer/football; the wife with the constant headache; the daughter who doesn't go to church; the sister who “has so many problems”; the flakey friend, the inconsistent blogger, the crazy patient, etc.

This person recognized the heroism just in keeping going in spite of it all (for me that's just getting the kids clothed, fed, and bathed). And saw me and the other amazing women around the table as creative, powerful forces benefiting the Lyme community and even impacting the future of medicine.

THAT will keep me going for a while. Someone thinks I have something to contribute, in spite of my other shortcomings. And that's where my focus needs to be. On what I CAN do. Not what I can't. That's a new lesson in gratitude for me.

I should add that Alix surprised us with "earthing kits" from the Earthing Institute, (you can watch videos about her earthing research here), and Ashley brought an organic, gluten-free, dairy-free, vegan pie compliments of Cafe Gratitude. The night couldn't have been more perfect. And I'm so grateful. For all of it.

Community

2010-11-09T20:41:00.000-08:00

Ashley, Eric Debra

I have surrounded myself with loving and supportive people. My Lyme friends are my second family. Without there love and support my path back to health would be much harder and so lonely.
I am lucky to have a caring Lyme family here in California and online.

Last week I was in New York City for the Turn the Corner 5th annual Unmask a Cure Gala fundraiser. There was a group of about 20 of us there who knew each other from Facebook. Most of us had never met in person. Meeting everyone for the first time was like Facebook come to life!

Hanging out with this group of people I’d never met before was not awkward at all. It was more like a family reunion than anything else. We ate meals together, explored New York, and stayed up late together all packed into a tiny hotel room.

The Gala itself was fantastic. So many interesting people to meet, great food (some was even gluten free), an auction to raise funds for TTC’s mission, awards and… they played the public service announcements that Lymenaide made for Turn the Corner this past May. It was pretty cool to see that up on the big screen!

It was all over too fast. There were so many people I wanted to spend time with.

I left with stronger bonds and closer friendships. I know that many of the friends I am making now will be friends for life. It is comforting to be a part of a large and caring family. As isolating as Lyme can be, I know that I am never alone.

I hope that next year will be even bigger and better. Actually I hope that I don’t have to wait a whole year to see my friends again!

*****

If you haven’t opened yourself up to becoming a part of the online Lyme community I recommend you do. I can say without a doubt that you will meet wonderful people who will understand you and be there for you if you ever need a shoulder to cry on, or someone to make you laugh. Don’t go it alone, this disease is too hard.

Turn the Corner’s mission
Turn the Corner is dedicated to the support of research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases.
See more pictures of our time in New York together on the Lymenaide Facebook page- http://on.fb.me/dBoNxc

One Big Step for this Little Lymie

2010-10-25T14:36:00.000-07:00

Major landmark in my Lyme disease journey today. I applied for a job. I haven’t worked for a year and a half, I couldn’t. Last spring and summer I could hardly have a conversation. I took at least one 2 hour long nap everyday, often two naps. My doctor forbid me from going to stores like Target and Bed Bath & Beyond because I was so sensitive to light, sound and smells. I couldn’t drive myself anywhere, I could hardly even ride in a car. Just being awake and fed was an accomplishment enough to call a day a good day.

Eleven months later I had improved enough to take on the challenge of Paint May Lyme Green 2010 and producing the Lyme disease awareness PSAs. It was a lot, no, a TON of work but I managed because I was working on the schedule that my body set. Time for sleeping in, naps, pills, special meals, insomnia, days spent in bed, bathroom breaks, Epsom salt baths, infarared saunas, time under the O2 compressor, reverse lattes, doctor’s appointments. Being home and answerable to no one but myself, I managed to be very productive and successful all while wearing my pajamas. The honest picture of the behind the scenes lead up to Paint May Lyme Green would be me in my pajamas behind the computer, usually unshowered, and looking like hell.

Six months and a really rough summer later, I sit here feeling almost healthy. My brain works again. My body is starting to wake up. I’ve gained weight, energy and desire. Until now staying home was all I could do, I didn’t want anything more. More wasn’t even an option. Now I have the desire to do things. I’ve started having dreams about running and skiing, things I use to love but haven’t missed until recently. My body is still weak but my brain is raring to go.

Until two months ago getting me out of bed before 9:00 am was a challenge. I preferred to sleep until 10 or 10:30. My insomnia would keep me up half the night and I couldn’t function until late in the morning. Now I’m waking up at 7:00 ready to get up. The insomnia has lessened and most days I don’t feel the need to take a nap.

I don’t want to stay home anymore, it’s lonely. I want to have some interaction with other people. Before, the thought of any kind of social life was so overwhelming I didn’t even think about it.

I don’t feel like staying home is healthy for me anymore. The huge shell that Lyme disease has housed (trapped) me in for the past two plus years has shrunk so much that I no longer fit. I have to admit that after all this time, I am comfortable here and I’m not sure that I entirely like the idea of getting booted from the small, safe world I have created for myself.

Stepping back out into the “real” world scares the crap out of me. What if I’m not ready, what if I relapse, what if people don’t understand some of the needs that I still have?

If I listen to my body, it tells me I am ready. If I look at my bank account it tells me, you’d better be ready.

Today I interviewed for two part-time jobs at Alpine Meadows Ski Resort. An industry I know like the back of my hand. Comfortable. This is the same Resort that my husband works for. Support and a chauffeur). I told them I can only work 2-3 days a week. I also told them that I have Lyme. Both departments offered me a job. Acceptance. Now it is up to me to decide which job is more suitable to my needs.

Last summer, 115 pounds, SICK, housebound, cognitive malfunction

September 2010, 130 pounds, feeling healthy and functioning well.

Holy Crap, I'm Getting FAT!

2010-10-02T14:03:00.000-07:00

Ashley's "fuller figure"

Seriously people, I’m struggling with this. I have a muffin top!!! It wouldn’t be so bad but the majority of the weight has gone to my tummy. I was honestly scared I might be pregers at first. I am so uncomfortable with my little buddha belly folding on top of itself, it’s squishing me. BLAH!

To top it off most of my clothes don’t fit anymore. Funnily, my skinniest jeans do still fit. They are low rise enough that my new addition can ride comfortably atop the ‘waistband’, which is actually located somewhere below my hips. Trust me you don’t want to peak under my shirt! My previously favorite pair of pants, on the other hand, suddenly went from boyfriend cut hip huggers to mom jeans, complete with being slightly too short.

The Reality- Am I fat? No, I am not fat at all. I don’t actually think that I am fat either so please don’t think that you need to send me any encouraging words. I did quite rapidly put on weight in the last two months, and I’m still adjusting to it.

It is a really good sign that I have packed on enough pounds to reach a healthy weight again. I have spent the majority of the last 10 years underweight. Good for the ego, not so great for my health. My whole family and my doctor can't stop gushing about how much weight I've put on and how great I look. Society and culture don't make accepting these type of comments as complements very easy.

Along with the weight has come extra energy, improved stamina and good report cards from my doctor. I am, happily, miles and pounds ahead of where I was this time last year.

A Birthday

2010-09-30T08:26:00.001-07:00

Thirteen years ago today, I woke to contractions. I was 34.5 weeks pregnant and scheduled for a hospital visit and pre-registration later that morning. We met my ob-gyn at her office beforehand. I still remember her words, "What do you think?"

"I think we're going to have a baby, today."

My son had been born 9 weeks prematurely. Doctors tried to stop the contractions without success. This doctor was hopeful my contractions would stop. She sent us to pre-registration at the hospital, asking them to check me again at the end of the visit.

We were given a quick tour by a very nervous receptionist. My water broke at the end of the visit and we were quickly moved into the room we had just toured. I was going to have another preemie.

There were several complications during the birth, the most dangerous being the umbilical chord was wrapped around our daughter's neck not once, but twice. Each contraction would be bring a slowing heartbeat. Enter high doses of Pitocin and I dilated from 3 cm to 10 cm in 20 minutes, avoiding a C-section by minutes. Our daughter arrived, weighing just 4 pounds 4 ounces, tiny and blue. Yet, like Kate DiCamillo's tiny mouse, Despereaux, she was "born with eyes open." My husband and I will never forget when she turned her tiny head to look directly at him the first time she heard his voice outside of the womb. The bond formed at that moment was a bond that will last a lifetime.

She was unable to maintain her own body temperature and her heart rate was of concern. She was rushed to the neonatal intensive care unit, her home for her first week. Doctors discovered a reflux that affected both breathing and heart rate and she would go home with a monitor that weighed nearly as much as she. It would be her guardian for the first year of her life.

The reason for my premature births remained a mystery. I did not drink or smoke. I ate well and exercised. I was not severely under or overweight. I was told that if we chose to have a third child, it would be a preemie. The doctor was right. Nearly five years later, our youngest entered the world, at almost the same age as her sister, weighing just 2.5 pounds. It would be many more years before we would learn the reason for the premature births. I was fighting a chronic bacterial infection. I had Lyme disease.

It has been well documented in scientific literature that the Lyme bacteria, Borrelia burgdorferi, can cause miscarriages, premature births and still births. Transplacental transmission has also been documented and we are convinced both of our daughters have been fighting this disease since birth. I would love to see Lyme tests for mothers and infants after unexplained premature births, though I wish we had a better test, knowing that the current test would potentially miss many.

On this day, we celebrate our daughter, a beautiful young woman, who brings so much joy to those who know her. We give heartfelt thanks to the fabulous doctor who saved her life at birth and to the fabulous doctor who has given her a new lease on life as she continues to fight Lyme and its co-infections. We are blessed beyond words.

Lyme Patient Groups Withdraw from Institute of Medicine Conference

2010-09-22T23:37:00.000-07:00

Got this latest Lyme news in my inbox this evening. You can let Congress know you support the Lyme groups' decision by signing this form and the LDA will send your reply directly to Congressman Christopher H. Smith (NJ).

NIH Does Not Comply with Congressional Appropriations Language
Lyme Patient Groups Compelled to Withdraw from Scientific Meeting

In a move designed to protest the Institute of Medicine’s upcoming Lyme disease workshop, three of the nation’s largest and most influential Lyme groups have pulled out of the process. After much deliberation, speaker Diane Blanchard, co-president of the Time for Lyme (TFL- CT) has withdrawn from the panel. The national Lyme Disease Association (LDA- NJ) and the California Lyme Disease Association (CALDA), along with TFL, will not participate in the workshop and their IOM commissioned scientific paper will not be submitted.

The scientific workshop was promoted by the Institute of Medicine (IOM) to be a conference about the state of the science regarding Lyme and tick-borne diseases. Despite the groups request for transparency and a balance of scientific viewpoints, as delineated in Congressional Appropriations language, neither the hearing panel nor the speakers selected by the IOM satisfy the Congressional intent or objectives. The IOM’s mission was to provide “independent, objective and non-partisan” advice to policy makers, yet the majority of the participants sitting on its Lyme disease panel belong to the Infectious Diseases Society of America (IDSA), a medical society with a known bias. Many key speaker roles were given to physicians who are IDSA members and supporters, a number of whom were involved with the IDSA’s controversial guidelines for Lyme. IDSA’s Lyme guideline development process was investigated by the Connecticut Attorney General which resulted in exposing the guideline panel as being riddled with undisclosed conflicts of interest.

In spite of the recommendations to NIH by Congress, the conference opens with perhaps the most polarizing figure in the chronic Lyme debate-- Dr. Gary Wormser of Westchester Medical Center -- who chaired the IDSA Lyme guideline panel and whose highly controversial biased views are well known. There are no scheduled speakers with opposing viewpoints of similar scientific weight to balance his presentation about the research gaps in Lyme disease. Many state-of-the-art scientific researchers and experienced clinicians have been relegated by the IOM and NIH to simply spectator positions.

The patient-oriented Lyme groups believe that this amount of bias undermines the integrity of the scientific workshop and that its final report will reflect this lack of objectivity. “We believe the entire process has the potential to cause additional harm to patients. After much deliberation our only recourse is to withdraw our support for this seriously flawed process. From the inception, TFL, LDA and CALDA have communicated our concerns, which were ignored. We remain hopeful that NIH/IOM will revamp the program to comply with the Congressional language which was responsible for initiating the workshop,” the groups said in a joint statement.

Time for Lyme, www.timeforlyme.org, the national Lyme Disease Association, www.LymeDiseaseAssocation.org, and California Lyme Disease Association, www.lymedisease.org, are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and support services available for this emerging infection.

For more on this check out the Lyme Policy Wonk.

Top Lyme Doc Says Antibiotics for ANY tick bite

2010-09-13T19:38:00.000-07:00

by Kim, SpiroChicks co-founder

Last week, I got this message from a friend on Facebook:

"Hey, we're on vacation and wife insisted that I send u a message. I pulled a deer tick out of my thigh 2 weeks ago. Big itchy spot at site now. no big ring. Kinda achy. How late is too late to be tested and start antibios if needed? So sorry to bother you with this, but wife worries a lot.”

There does seem to be a lot of confusion around what to do if you get a tick bite. And given my experience down the long, rutted, windy, washed out road of chronic Lyme, knowing that if I could change the past I would (i.e. eradicated the buggers before a deep set infection requiring YEARS of antibiotics set in), I wrote back: GO TO URGENT CARE AND GET ON ANTIBIOTICS ASAP. Then find an LLMD when you get home.

So for next time, you or I get a message like this, here's a post you can refer your friends and family to. The best resource out there is Dr. Burrascano's Advanced Topics in Lyme Disease from the International Lyme And Associated Diseases Society site. On page 19, He reccomends antibiotics for 28 days if you just get a tick bite, and six weeks if there's a rash. In the Appendix on page 32, is the rational for treating ANY tick bite:

RATIONALE FOR TREATING TICK BITES
Prophylactic antibiotic treatment upon a known tick bite is recommended for those who fit the following categories:

1. People at higher health risk bitten by an unknown type of tick or tick capable of transmitting Borrelia burgdorferi, e.g., pregnant women, babies and young children, people with serious health problems, and those who are immunodeficient.

2. Persons bitten in an area highly endemic for Lyme Borreliosis by an unidentified tick or tick capable of transmitting B. burgdorferi.

3. Persons bitten by a tick capable of transmitting B. burgdorferi, where the tick is engorged, or the attachment duration of the tick is greater than four hours, and/or the tick was improperly removed. This means when the body of the tick is squeezed upon removal, irritated with toxic chemicals in an effort to get it to back out, or disrupted in such a way that its contents were allowed to contact the bite wound. Such practices increase the risk of disease transmission.

4. A patient, when bitten by a known tick, clearly requests oral prophylaxis and understands the risks. This is a case-by-case decision.

The physician cannot rely on a laboratory test or clinical finding at the time of the bite to definitely rule in or rule out Lyme Disease infection, so must use clinical judgment as to whether to use antibiotic prophylaxis. Testing the tick itself for the presence of the spirochete, even with PCR technology, is helpful but not 100% reliable.

An established infection by B. burgdorferi can have serious, long-standing or permanent, and painful medical consequences, and be expensive to treat. Since the likelihood of harm arising from prophylactically applied anti-spirochetal antibiotics is low, and since treatment is inexpensive and painless, it follows that the risk- benefit ratio favors tick bite prophylaxis.

The Semantics of Lyme

2010-08-22T12:16:00.000-07:00

Yesterday I read an article online that at first pissed me off. I try to keep an open mind so I kept reading. By the end it only half pissed me off. The article is entitled Another Perspective on Lyme Disease it was written by David Itkin, an infectious diseases doctor in Portsmouth.

In the first paragraph he defends the IDSA and their Lyme guidelines. Generally I would have stopped reading right there, but he also said that the guidelines work for the majority of his patients. I wanted to know about the minority and his opinion there.

Seeing as I know of thousands of chronic Lyme sufferers I’m going to have to say, “Sorry David, we aren’t that rare.” While it is hard for me to get over my bias of anything or anyone who says the IDSA got it right, I don’t think that Dr. Itkin is actually discrediting us or our illness. He isn’t the first person to say calling it Lyme disease isn’t accurate. Even chronic Lyme isn’t really telling the whole story.

How many infections do you have? How many imbalances? How many active viruses and bacteria unrelated to Lyme? Parasites, amoebas??? Lyme is only one piece of the illness we chronic sufferers are dealing with. Perhaps it was the catalyst, or the straw that broke the camels back but it isn’t our only problem, for many of us it isn’t even the most pressing problem.

It seems like Lyme is the common denominator, the thing that we all share, but after that our illnesses are all unique and vary greatly. Some of us suffer physical pain, some have more neurological symptoms. I have digestive problems, others have heart problems. In my personal case when it comes to treatment, actual Lyme disease has never been a major player. For me it has been Bartonella, viruses and bacteria unrelated to Lyme. Oh and I had those worms and amoebas to deal with too.

Dr Itkin says in his article; “I do believe that there is a true medical condition (or conditions) that we are currently unable to characterize…”

I can live with that. What I think he fails to acknowledge is that we call that condition, Chronic Lyme Disease. An accurate description or not, it has been given a name. Arguing semantics isn’t helping me or anyone else. Stop fighting about what it isn’t, we all know that it isn’t just Borrelia Burgdorferi.

There is a whole lot of Dr Itkin’s opinion that I don’t agree with. I give the patients a lot more credit than I feel he does. I don’t think that calling Lyme the carrot to the desperate is fair at all. My doctor’s were very upfront about the illness, the complications, and never once lead me to believe that I simply had Lyme and nothing else. In there opinion it is also an inaccurate name for the chronic illness I have.

My LLMD often talked about my autoimmune disorder more than Lyme disease. My current doctor is treating me because I am ill and we are working to build my immune system back up while attacking any bacteria, viruses or imbalance that arise.

I’m not very good when it comes to politics, but I don’t see how creating legislation to allow doctors to treat patients without fear of losing their medical license is a disservice to patients.

Dr Itkin fears that such legislation would lead to “cookie cutter” diagnosis and treatment. He says, “A compassionate provider may decide on a case-by-case basis that a patient deserves treatment that diverges from standard conventions. A law is not needed for this.”

I think he got that last part backwards. It appears that we do need a law to allow our providers to decide on a case-by-case basis that we need treatment that diverges from standard conventions. Without it we are in danger of only being allowed the IDSA “cookie cutter” diagnosis and treatment.

Originally posted by Ashley on Lymenaide

The New Super Mom?

2010-08-11T22:29:00.000-07:00

Here I am about a half hour before my son's fifth birthday party (and no my house never looks this clean on a daily basis). Jumpy house was up and we were expecting about 40 guests. I'm washing fruit while Gentimycin drips into my arm via my PICC. I had also just taken a Vicodin because the Gentimycin gave me debilitating headaches and I couldn't take NSAIDs while on it.

I had also taken Ginseng and my daily low dose steroid to give me energy to get through the day, not to mention all the other oral antibiotics, natural anti-inflammatories, homeopathic tinctures, and vitamins that are part of daily regimen that keep me functioning.

I'm reminded of Alix's Ginger Rogers post about how she did everything Fred Astaire did, but she did it backwards and in high heels. That's about how if I feel sometimes if I compare myself to others. It takes a lot of pharmaceuticals and a Coke (I'm off caffeine and sugar so this is a real treat and buzz) to get me through a party. And it took me nearly a week to recover. But I did it. Not sure if that makes me crazy or the new breed of super-mom.

Susanne's tips for feeding your gluten free family

2010-08-08T11:01:00.002-07:00

It seems that one of the hallmarks of Lyme sufferers is having to struggle with multiple food sensitivities and chief among them is gluten. I've eaten a gluten free diet for well over ten years. But in the past several years I've discovered that my sons are gluten intolerant as well. While feeding myself had been challenging enough, feeding my kids gluten free was even more challenging. With school lunches, birthday parties, and social events, somehow I've had to figure out how to provide options for them that free them up to choose what their body needs while still engaging in everyday social activities. It's been hard! Here I share a few tips that have made this endeavor a little easier.

Breakfast on the go:

This Multi-grain waffle recipe from Ali of Whole Life Nutrition has made on the fly breakfasts possible. On Sunday mornings my husband and I make this recipe for our family. Today I made them while my husband went out and picked our blackberries. So we had waffles with fresh organic blackberries. Yum! And then there's always plenty left over to pop in the freezer for on the fly breakfasts throughout the week.

A sweet treat:

My gluten-free brownie recipe has way too much sugar but it's decadent and way too good for those glutenous eaters to turn their noses up. I make these and wrap them individually and put them in the freezer at school. Next time the birthday treats roll through the classroom there's a super yummy scrumptious treat in the freezer for the teacher to pull out for my son. He doesn't feel quite as deprived, after all their his favorite!

Pizza Pizza:

I think the hardest food for my boys to give up is pizza. Thankfully I found this super easy pizza crust mix from Namaste Foods that tastes soooooo good. For tips and pizza sauce recipe see my pizza blog post. I haven't taken the boys off dairy ... yet. So for now they get Mozarella cheese and I get goat cheese which tastes delightful by the way. But maybe we can get Kim to share her "cheese" recipe made from cashews, another great alternative to make this a dairy free treat as well. I make this usually once per week so I can tuck a pizza in my son's lunch for a little change from the usual.

Super packed on the fly nutrition for mom:

Green smoothies are the best invention ever. I feel so good when I drink these! I use it as a meal replacement or midday snack. It's a super fabulous way to load up on greens without having to eat a salad loaded with dressing.

My favorite green smoothie:

2 cups water

3 large handfuls spinach

1 apple or pear

dash of cinnamon

blend to smooth consistency with blender

Blender tip: after breaking two blenders in the first four months of smoothy making I broke down and purchased a Vitamix. Smoothies made with the Vitimix taste so much better than the ones made with others. It's now a necessity in my kitchen.

Another staple I can't live without:

I shared the recipe for Maple Granola in this blog post about Progurt. But it's worth mentioning again as it's a staple in my home. I make Maple granola usually once per week. It's fabulous to add on top of yogurt or eat for breakfast. I buy the gluten free oatmeal from Bob's Red Mill and get organic coconut shred in large pieces. Super crunchy and good for you too.

I highly recommend this cookbook from Whole Life Nutrition. It is packed with useful information and tried and true recipes. Also Ali's recipe blog is an invaluable resource.

I know we'd all love to hear what other tips you all have for living a gluten free life. So please share.

Tender loving care for Lymies

2010-08-06T09:57:00.000-07:00

Thanks Ashley for your post on beauty care options for Lyme Beauties! One of the things I love about this blog is the ability to collaborate and share ideas and solutions. I thought I'd share a couple things as well. Since giving up personal hygiene products laden with chemicals over a year ago, I've been on a journey of non-stop experimenting. Here's my list of recently discovered chemical free favorites:

I use Pomegranate Seed Oil as a facial moisturizer. This stuff really is the bomb! I absolutely love it. I smooth it on my cheeks and over my eye lids. Yes it feels greasy but after five minutes it soaks in and my skin looks soft, vibrant, and full of moisture. The organic version from Mountain Rose Herbs is my favorite. Yes it's expensive but really does the job. Recently I've been experimenting with a concoction of Pomegranate Seed Oil, Rose Hip Seed Oil, Lavender essential oil, and Carrot Seed Extract. It's really kind of cool. I encourage everyone to experiment with the things they love! When you put something on your face it is so close and personal; you need to love the way it feels and smells. The pomegranate seed oil has an interesting nutty smell, that's why I started adding a few essential oils.

Also for my face, I created my own face soap and I've been enjoying using naturally good soap with no chemicals on my face. It's a real treat. This is just one example of my personal needs driving my product development. Pomegranate and Rain handmade facial cleansing soaps are available on my online store. Check out spirochick co-founder, Kim's review of my face soap.

For deoderant I found this Crystal Ally spray deodorant from Simply Divine Botanicals. I am so enthusiastic about this product, it's the first chemical free deodorant I've found that actually works! They also have one designed to encourage lymphatic drainage. Very cool products! Thank you Simply Divine Botanicals!

Also, I'm with Ashley on the salt scrubs. These are so easy and somewhat inexpensive to make, totally chemical free and super luxurious on your skin. Here's the link to my blog post on DIY Salt Scrubs.

Last but not the least important, everyday, multiple times per day I use my handmade soaps in the shower, at the bathroom sink, at the kitchen sink. I use it on my body, my face, my hands, and sometimes even my hair. And though I don't test my products on animals, our loyal family member, Chip, our chocolate Labrador, deserves the good stuff too! He most recently bathed in Lemongrass Poppy Seed Handcrafted Soap. I strive to make each of my soap recipes as organic as possible. I do not use any synthetic fragrances. I've found that the synthetic component of fragrance is what I'm allergic too. And I don't use dye. I regularly create over 20 varieties of all natural handmade soaps because everybody's a little different and needs something different and of course I just love creating something different all the time. Lymies you might consider the TLC Bar, tender loving care for skin and spirit. It's lightly scented with lavender essential oil and the olive oil in this soap is infused with calendula, known for it's gentle healing properties. $1 from the sale of each bar of soap is being donated to Turn the Corner Foundation. It's now on sale through August 10th.

Lyme Beauty

2010-08-04T08:42:00.000-07:00

My skin can be quite sensitive. Last year I was having a hard time finding body soap and lotion that didn't bother my skin.

I started using coconut oil instead of lotion. I even used it on my face. It worked really well but it left me super oily.

One day I splurged on a tub of chocolate scented body scrub. The stuff was heavenly! It smelled so good and it didn't bother my skin at all. The only problem was the price. It cost $15 per tub. A tub was only enough to last me three weeks.

One day I decided I was going to learn to make my own. It is so easy and it does work out cheaper. There are 100's of "recipes" online.

My favorite part about these scrubs is that they moisturize as well as exfoliate. I have really dry skin but using a scrub like this, I don't ever need to use body lotion. That is another cost saving point for the scrubs.

Homemade scrubs are a great option for sensitive skin or people with MCS, multiple chemical sensitivities. You can pick your own ingredients based on your sensitivities. Your scrub won't have any of the harsh ingredients found in most soaps and lotions.

I posted a tutorial for my body scrub on my blog Upcycled by Ash- http://upcycledbyash.blogspot.com/2010/08/homemade-body-scrub-tutorial.html

I love the scrubs, obviously, but there are a lot of other products I have discovered that have made a big difference to my Lyme Beauty Regime.

My other favorite "beauty" products-

Doc Bronner's Magic Soaps I have actually used these since I was a kid. I love the peppermint all in one soap best. I use it as body soap in the shower and as hand soap in the bathroom and kitchen. I fill a spray or pump bottle half full with water and half with the soap. It is still plenty sudsy and the bottle lasts 2-3 times longer, good value!

Dr Hauschka Shampoo and Conditioner My favorite shampoo and conditioner ever. It isn't cheap but it is good stuff! 100% solved my dry brittle hair problems.

Burt's Bees Carrot Day Creme Most face lotions contain too much aloe. My face turns bright red if I use an aloe based lotion. If it isn't the aloe, it's the perfume. The Carrot Day Creme is a nice think lotion, it does have a noticeable scent but it isn't perfumey. As an added bonus the carrot adds some color to my face! The lotion does contain aloe but it is one of the last ingredients.

Tom's of Maine Calendula Deodorant We had a friend who died of Breast Cancer when she was 26. One thing she asked all of us was to stop using deodorants that contained aluminum. After trying, I don't even know how many that didn't do anything, I finally found this one. It works and it doesn't bother my pits.

BugBand Insect Repellent Bug spray in general makes me gag. It isn't easy to find a "natural" Deet free option that specifically says it repels ticks,this one does. It still smells strong, but it is essential oils instead of chemicals and synthetic fragrance. You do have to apply it on a regular basis though, it's magic effects won't last all evening with just one application.

The next two are very personal products, but someone has to share them-

Weleda Calendula Diaper Care My sister has a baby and this is her favorite diaper creme. I don't have any kids, but I discovered in a moment of desperation that this stuff works great for feminine dryness/vaginitis. Don't ask.

Sensuous Beauty Love Balm Forget irritating petroleum based KY Jelly. Love Balm is sooooo much better!

OK, now I'm a little embarrassed but I'll survive.

None of these products or brands have paid me, sent me samples or asked me to do a review. I just wanted to share with you some of the products that have made my sensitive life a little better. That said, just because these products work for me does not mean they will necessarily work for everyone. Make sure to read the labels to check for allergens and take it slow when introducing new beauty products to sensitive bodies.

What are some of the best products you have found
that work for your sensitive selves?

Life Lessons Learned

2010-07-29T18:14:00.000-07:00

“I couldn’t live with myself any longer. And this question arose without an answer:
who is the ‘I’ that cannot live with the self? What is the self?"
-Eckhart Tolle

I use to go to a Lyme disease support group once a month. I really enjoyed the group. It was there that I met Alix and Kim from SpiroChicks and Scott Forsgren, the Better Health Guy, as well as a myriad of other Lymies who I felt a camaraderie with.

Over the winter I moved and I hadn’t been able to make it to a meeting again until this past Tuesday.

The topic was the Mind-Body Connection. One of the ladies in the group had read the book Mindsight by Daniel Siegel.

Siegel combines Western neuroscience with Eastern meditation in an exciting exploration of how a troubled mind can right itself. Drawing on current science and case studies, Siegel, a clinical professor of psychiatry at UCLA School of Medicine, reinforces the idea that the power of reflection allows us to approach, rather than withdraw, from whatever life brings us.

The book itself sounded interesting. I have read about how stress and distress can make you physically ill. This is one of the things I explored with a psychotherapist before I was diagnosed with Lyme. She agreed it was an important aspect but she knew that there was more to my illness than just this. Gotta love the shrink who tells you, “You are sick, but it is not all in your head”.

It was the discussion that was opened up by the topic that had a profound effect on me though. The Self and the importance of Clan to your healing.

I was stunned by the realization that I give no time to my “Self” and I don’t have a Clan.

The Self-

You may call this the spirit or soul, to me it feels right to call it the Self. What is the Self? This is the true you. The brain is an organ and the body is a vessel but neither is who you are.

Where does the Self exist? I have no idea. To be honest the whole idea is more than I can really comprehend. It is like the question, “Where does the Universe end?”. You know that the universe doesn’t end; it is everywhere and forever. At the same time you can’t really visualize that as reality.

Some people believe that the Self exists in the heart center. This feels right to me. Not only does it feel right, but feeling this makes me feel more grounded. I spend a lot of time living in my head. Living in that state makes me feel disassociated from my body, or maybe it is more than that, I am disassociated from my Self.

I am always trying to work things out, to figure and to fix. I rarely if ever take the time to just be and to accept.

You are probably asking what in the world this has to do with my health. By letting go of the frantic workings of my mind; the worries, the fears, the obligations… If I can just stop, just be, I feel myself relax, my mind becomes calm. The stress and the worry melt away. Miraculously things become clearer, my mind can function better. There is no doubt that this is a much better, much healthier state to be in. I need to learn to connect with and respect my Self.

Clan-

I have a lot of friends… on facebook. I have a good family, we all care about one another.

This is not the same as having a “Clan”. A true clan is having people you can depend on, who understand you and accept you. People you can open up to and really share your life and your feelings with. A Clan is more than just a few people, a Clan is a large functioning social network. The Clan needs to include people who exist physically in your life, not just online.

To be honest, I don’t know if I have ever had this in my whole life. Sadly I have always prided myself on not needing anyone. I thought I was strong. Now I can see that “strength” was actually fear and my pride was a wall to keep me from getting hurt. I realized this Tuesday night when the LLMD who facilitates the group told us to ask for answers from our hearts not our heads.

As we continued to talk about Clan, aura and energy came up. Recognizing the people in your life who fill you up and those who are toxic. We need to surround ourselves with people who give us energy and to avoid those who steal it.

This is a really hard realization to face. What do you do when you know without a doubt that your relationship with best friend or your family members are toxic? Can you really give up those relationships?

I remained completely open as the meeting went on , but I was a little in shock. I have some major things in my life that I need to work on. Pills and potions aren’t going to cure me alone. I need to take an active role in my healing. I thought I was but now I realize I was going about it all wrong.

I’m often commended for my positive outlook and for not letting this disease or life get me down. It’s true, I don’t, another thing I have always been proud of. Unfortunately what I realize now is that even here I am hiding behind that wall. Fooling everyone including myself. My attitude has come more from avoidance than truth.

So what do I do now? I am "little girl lost", I don’t know my Self and I don’t have a Clan.

Finding Self, I know how to do. Sticking with it is the hard part. I’ve had glimpses of my Self in the past. Sometimes the truths there are hard to accept. Perhaps that is why I have always given over to my mind which has allowed me to avoid the realities of accepting what my Self has to say.

As for finding a Clan, I have no idea where to start. I don’t work and I’m currently not the active person I use to be. Where am I supposed to find these Clan members? And then there is the fear of not being accepted. This is an issue that stems from my childhood and teen years. Suffice it to say, kids can be mean. You know that elementary school comeback “I’m rubber, you’re glue, what ever you say bounces of me and sticks to you”? I never had that rubber armor. I was just glue. Everything rubber said stuck to me and added to that wall.

I am determined to break down my wall. I can see how it is negatively affecting my life. I can also see how much fuller my life could be without it and how that in turn would positively affect my health.

Udi's to the Rescue, Sweet Stuff

2010-07-27T11:25:00.000-07:00

Lemon Streusel Muffins

A few weeks back I was so excited about my new gluten free find, Udi's Bagels that I wrote a post about how much I loved them- I Love Udi's. Udi's read my post and because of that I recently had the opportunity to sample Udi's Gluten Free Foods line of muffins and cinnamon rolls. Muffins are one of the foods I've missed most with my gluten free diet so this was quite a treat!

Saturday morning my husband and I made up a platter of muffins a frosted cinnamon roll and mugs of Teeccino (a caffeine-free coffee alternative). It was a warm sunny day so we decided to take our amazing breakfast outside.

I realize not all Lymies eat sugar, but many do. I hardly at any sugars for the first year of my treatment. My biggest treat was a couple a squares of 85% dark chocolate. When my digestive issues got under control I did started eating sugars again, but I am careful about moderation. If I overdo it, I pay for it!

What we tried-

Lemon Streusel Muffins
Blueberry Muffins
Double Chocolate Muffins
Cinnamon Rolls

It was quite a satisfying breakfast. It felt so novel to be eating muffins after going so long without them. So many gluten free products look good but fail on texture and taste. Not so with these products.

What we thought-

All the products look and feel like the real deal. I highly doubt anyone would even know that they were gluten free. My dad came to visit before we finished all the cinnamon rolls. He hates all my gluten free foods and never holds back from telling me how terrible they taste. I didn't tell him the cinnamon rolls were gluten free and he didn't notice anything suspect about the taste.

My husband and I both agreed that the Double Chocolate Muffin was the best. It had the best flavor and the texture was the best of all the products. The chocolate chips throughout really make these great muffins.

My second favorite was the Blueberry Muffin. Like most blueberry muffins, I wish it had more blueberries, I like a lot of berries! My husband's second favorite was the Lemon Streusel Muffin. He thought it had better flavor than the blueberry muffin. I agree that it had more flavor but for me it was too lemony. Both muffins had good texture but it wasn't quite as good as the Double Chocolate Muffin.

The Cinnamon Rolls are yummy too. They aren't as ewie gooey as fresh cinnamon rolls but the texture is good and the frosting adds a super cinnamony taste. I love cinnamon so this was perfect for me, my husband thought it was a little too much cinnamon flavor.

None of the products taste like a sorry excuse for their gluten counterparts. They are all good when it comes to taste and texture.

I'm still more of a savory person. Udi's wholegrain bread and bagels are still my favorite of their line of products. I'm happy to know where to go when I get a craving for something sweet though!

Udi's products are gluten free, dairy free, soy free and nut free.

Platter of Yummy!

You can find Udi's products at Whole Foods Market and at many Natural/Health Foods stores. Some larger supermarkets do carry the products. You can also order Udi's online from their website- http://udisglutenfree.com/products

If you are interested in Teeccino, the herbal coffee alternative I mentioned, here is the link to their website- http://www.teeccino.com/

A Bit of Mourning

2010-06-19T02:09:00.001-07:00

Tonight I can't sleep. It is warm and humid and Borrelia do not like heat. Our youngest has awakened several times, anxious and in pain. Though she's finally sleeping, I've given up for the moment and here you find me. At the computer at 4am. Perhaps I'll sleep better in a bit.

Each time I sit down to the computer, I face the evidence my life has changed. In high school, I was blessed with an English teacher who taught me to write well. With Lyme, what once took minutes can take hours. I read and reread because of multiple errors; errors I never made before.

My girls want to learn to play piano. Our teacher encourages parents to take lessons first so they can help their child during the week at home. This week I took my second piano lesson and teared up. I don't know how to explain it other than the piano acted as a magnifying glass to the weaknesses that have developed in my body. The muscles in my hands and arms were screaming their fatigue. I felt there was a wrestling match taking place between my brain and the rest of my body. The piano teacher was patient and kind as I tried to explain my emotions. I learned if I look at my hands as I play, my brain has an easier time communicating with the rest of my body. I sense piano could become a form of physical therapy in my healing. It also raises the question should I look at myself as I walk? I may try this in a safe place in our home as my legs occasionally have a mind of their own.

To face Lyme, it often takes superhuman strength, both physically and emotionally. Perhaps tonight I needed to mourn for a bit the person I used to be, as I feel the need for sleep returning. Sweet dreams and bless you for sharing this journey.

A Perfect Example

2010-06-15T22:45:00.000-07:00

Lyme disease has a tendency to consume your life. Not only the sick person's life, but the lives of our loved ones as well. It is unavoidable.

This isn't all bad. Our lives are so consumed that it seems no matter who we talk to we eventually end up on the topic of Lyme disease. Which, if nothing else, helps to spread awareness.

Yesterday my car broke down and I had to get towed. Guess what? The tow truck driver had never heard of Lyme disease. He didn't know that we live in a high risk county. He didn't even think we had ticks here.

I made sure to tell him all about the tick I found in my hair this April after walking along the paved river trail.

He knew there were ticks about an hour south of us where it is significantly hotter all year long.

"Oh, you mean where the deer and the birds that carry the ticks go for the winter?"

He has decided he needs to do some research.

I'm not the only one who constantly finds myself talking about Lyme, my husband does too. It usually starts something like this, "so, what does your wife do?", and there he is talking about Lyme disease again.

Today he came home with a story that perfectly illustrates why everyone is at risk of contracting Lyme disease, no matter where they live or how outdoorsy they are.

My husband explained to a new co-worker about how his wife (me) doesn't work because she has Lyme disease.

These are the basics of the tick experience the co-worker shared with my husband-

A few years back he decided to check out property in Virginia (it is a lot cheaper there than it is here in California). He had some friends out there that he went to stay with.

They went out hunting and came back covered in ticks. Literally from the sounds of it. They brushed them off and removed them, then carried on with life.

A few days later, back in California, the man went to a office where he had some business to attend to. After he left the people in the office started finding little ticks all over the place.

The man was horrified. If he had left ticks all over the office, he must have left them all over the plane and airport as well!

He knew about Lyme disease. While he doesn't appear to have been infected, he knows the possibility exists that one of the ticks that hitched a ride on him may have carried Lyme. One of them could have bitten and infected the next person it came into contact with at the airport, in the plane or back here in California.

Dramatic GI changes with Progurt

2010-05-17T05:00:00.000-07:00

When my LLMD suggested I try Progurt, probiotics that would have to be shipped to me from Australia, I was a little skeptical. He said their probiotics are different than any other on the market and some of his patients had responded really well to it. But I still wondered "How is Progurt going to change the problems going on in my GI tract?" Anyway I read Progurt's entire website backward and forward and decided it was worth a shot. I really had little to lose (except the cost which was plenty) as I've become allergic to anything I eat on a regular basis and my list of okay foods has narrowed substantially in the past few months.

Since I have a milk allergy my doctor suggested that I put the progurt sachets in water and drink it instead of making it into a yogurt as recommended by the manufacturer. But having read Progurt's entire website I intuitively felt that I should follow their directions, I felt like if I was going to give this a try I wanted to try it their way. Their instructions were to use Ultra Pasteurized Whole Milk as a sterile base in which to incubate their probiotics. According to their website people with milk allergies can use progurt because the probiotics change the lactose in milk to lactase which is easier to digest. I sent them an email asking for any alternative to milk and they insisted there were no alternatives and that I would do fine on the milk based progurt. They gave me instructions to drink two sachets in water the first day, one the next, and then start consuming Progurt made from milk the next day.

Well I'm here to tell you that Progurt has changed my life. Since this isn't a medical blog I don't think you want the gory details of how I know it's changed my GI tract, but trust me it truly has. I've been totally amazed by the results. I haven't been digesting my food for many months and after just a few days I started noticing changes in my digestion, etc. I also started craving and eating more fresh fruit and fruit juices. I've had to cut all of these antioxidant rich foods out of my diet because they made me feel lousy. I am so so thrilled to be able to eat fruit again. The Progurt itself tastes fabulous. I feel like I'm eating dessert when I load it with seasonal fresh fruit and the granola I started making. In fact I'm sharing the granola recipe because I had to start making my own since I have a problem with nuts (a problem I hope to eliminate as my GI tract continues to heal).

Maple Granola
3 cups gluten-free rolled oats
1 cup dried unsweetened coconut chips
1/2 cup pure maple syrup
1/2 cup extra virgin olive oil
1 tsp sea salt
3/4 tsp freshly grated nutmeg
1 cup pecans or walnuts (if desired)

Preheat oven to 300 degrees. Mix together all ingredients and spread on baking sheet. Bake stirring every 10 minutes for 40 minutes.

This is not my recipe ... my sister got it out of some newspaper. If this is your recipe please take credit for it.

Susanne, Kim's sister, is our latest SpiroChick. She also blogs at Adventures of a Soap Artist.

Walking On

2010-05-15T05:00:00.000-07:00

Part III of Susanne's Story

What I have discovered is that the only way I can truly walk on into the abyss of the unknown is to place a deep and impenetrable trust in the Creator of the universe in whom I move and have my being. I cannot explain why Borrelia burgdorferi made its way into creation, just as I cannot explain why natural disasters have their place in the universe claiming thousands of lives at a time, or why murderers grow up to murder. There are plenty of Biblical scholars out there who will try to explain this. I cannot.

But this I know: the Creator of the universe has not stopped creating. He takes the good, the bag, and the ugly stuff of life and weaves it into a tapestry of beauty. I’ve seen it in my life and I’ve seen it in the lives of countless others. The small piece of my life saga that I shared in Part I and Part II I see now through a lens of incredible grace and beauty. All the pain and turmoil has been used in my life to dramatically change who I am. I cringe at the early years of my marriage when I demanded that life happen to my drumbeat. My mantra was, “it’s the road to perfection, and you’re on it.” I cringe and now I can laugh at how incredibly self-absorbed I was. And really what’s perfection anyway? What do you do once you get there? I don’t even long for it anymore! Praise Jesus! It remains in my mind as a crazy notion of misplaced desire.

How did chronic pain and suffering teach me this? By having things rarely go my way, and then finding the beauty in the way it went. Of course it took years for me to see the beauty. Thankfully I had precious people around me showing me and helping me to find the eyes that could see the beauty. This is just one small storyline among the many storylines of beauty woven through pain. But I’ve grown to have this confidence in the God of the universe who is compassionate and loving and good at every turn even when the circumstances of life seem contrary to this truth.

So how do I face the journey ahead with Lyme disease and all? I guess I’d like to be like Captain Jack in the second Pirates of the Caribbean when he’s about to be consumed by the enormous beastie. He just turns to the beastie sword in hand with his Captain Jack wry grin and says “Oh, hello beastie” and takes her on! I LOVE this scene. He’s facing destruction to be sure and he just goes for the fight and he intends to fight hard at it. Anyway, I look forward to having you all rescue me from the “ends of the earth and beyond” to fetch me back!

So it turns out, I’m a SpiroChick after all. When my sis told me “You know you are a SpiroChick, why don’t you write with us.” I really couldn’t, wouldn’t. I was still in my denial and "I can’t go through this" phase of my Lyme journey. Let’s just call this diatribe my SpiroChick coming out party. I’m ready to take on the beastie. I have no idea what that looks like, where this journey will take me, how much more pain and suffering I will go through, but I’m facing it head on. “Savvy?”

Susanne, Kim's sister, is our latest SpiroChick. She also blogs at Adventures of a Soap Artist.

Diagnosis

2010-05-13T14:58:00.000-07:00

Susanne's story Part II

Can I blame Borrelia burgdorferi for all my years of sickness? I don’t think so. But it is a piece of a complicated web of mysterious illness that over the years has come to include Hoshimotos thyroiditis, chronic Epstein Barr virus (and other chronic viruses), chemical sensitivities, numerous food allergies (list still growing), chronic inflammation, joint pain, gluten sensitivity, ear pain, chronically swollen glands, inability to concentrate, short term memory issues, and more.

So when things went completely haywire last year with the symptom proliferation being crazy and beyond the scope of local practitioners I sought the help of someone outside the area. When the diagnosis came back “you have Lyme disease” it was not a huge surprise. One might think that having a diagnosis would be a relief of sorts, but it is really just another beginning to another complicated and terrifying journey into the unknown.

There is still so much that is not known about Lyme. To say that Lyme disease is surrounded by controversy is somewhat of an understatement.

In my very laypersons understanding, Borrelia burgdorferi is this incredibly adaptable organism that hides from your immune system and attacks where it is weakest to wreak havoc on you all the while thriving in your system. The organism’s adaptability and ability to survive creates a huge variety of symptoms in individuals creating a complicated web of treatment needs and options. The practitioners who are willing and able to treat the disease are the ones who listen to their patients and believe that this crazy symptom proliferation exists and are willing to work tirelessly and creatively at managing the disease all the while facing a sea of scrutiny about whether it really is Lyme disease, whether the treatments work, which tests are reliable for diagnostic purposes, and the list of controversy goes on … and on.

So having been diagnosed with Lyme, where am I exactly? Almost right where I was before with a whole new sea of information to weigh and ponder.

Most days I resort to pretending that the harsh reality of Lyme disease does not exist at all. But then I’ll have this series of days where life is spiraling downhill fast in a sea of fatigue, pain, and inability to think straight and I have to look it (Lyme) in the eyes and acknowledge it’s existence in my life, a force to be reckoned with. At night when I lay awake because I can’t fall asleep because of the pounding in my head that sometimes sounds like horses galloping across my brain and sometimes just a buzzing thumping sound I realize I can’t escape the knowledge of it.

I’ve pondered this sensation with a few docs, my blood pressure is golden, experimented with some other culprits and come up with zilch. So the weird pounding, buzzing, galloping thing, it sounds crazy but I wonder if it’s those little spirochetes putting the screws to my brain, drilling their way through my tissues looking for something new to plunder. Who knows? But it’s just another mystery among the sea of them. And I won’t fall anymore for the idea that I must be mentally ill.

But after the days of denial pass, and the awareness of reality breaks through, and I square with the idea that I have Lyme and a perilous road ahead, the question is how do I walk on?

Coming next: Part III,Walking On

Susanne, Kim's sister, is our latest SpiroChick. She also blogs at Adventures of a Soap Artist.

When Borrelia burgdorferi knocks on the door of your immune system

2010-05-12T14:47:00.000-07:00

Susanne's Story Part I

Although I don’t know exactly when Borrelia burgdorferi knocked on the door of my immune system I suspect it was around the time that I became violently ill with giardia after spending some time in the backcountry of Idaho with my parents and little sis.

For most people backcountry sounds like a quaint little cabin in the woods with a road leading up to it. Well that’s not exactly what it was. We spent about ten days on horseback exploring the mountains behind our already remotely located ranch along the banks of the wild and scenic Salmon River dubbed “The River of No Return." We saw no one for the entire duration of the journey.

At the time, I was a teenager. This particular adventure stands out in my memory as a moment of peaceful quiet serenity juxtaposed against the backdrop of the tumultuous difficulties of high school life and pretentious relationships. The adventure into the backcountry is a precious memory of time standing still and immense beauty beckoning my soul. Then along came giardia, weeks of throwing up and diarrhea followed by allergies, fatigue, weakness, depression, catching every bug that came by, and so on.

I finished high school and managed to be accepted to my top choice college. College came and went and remains a bright spot in my memory of carefree days of studying at the beach (yes I actually trained myself to block out the distractions so I could maximize my time at the beach and still get the grades I wanted) and authentic friendships with fellow sojourners. But the bright days were mixed with long episodes in bed recovering from the bug that took everyone else a few days to recover from and typically dizziness and vertigo, all unexplained and mysterious.

Post college I met the love of my life, we married and not according to plan immediately starting having babies. Two incredible little blessings came within two years of each other. A car accident while 7 months pregnant with the second left me unable to lift my daughter from her crib when she was born, my son, then two had an incredible responsibility of being the delivery boy, picking up what I could not (not the baby of course, somehow I must have managed it with excruciating pain and weakness).

I’ve spent the past 15 years with varying degrees of intense and chronic low back pain with little explanation as to why, no diagnosis really. A gazillion doctors, a gazillion physical therapists, several chiropractors, cortisone injections, etc. etc. etc. Then all the vestiges of youth left my feeble body when a third pregnancy, seven years after the last did me in.

After 7 months of excruciating pain, inability to stand or sit, an incredible gift was born. My youngest turned out to be sort of a mini-me even though a boy. I have learned more about myself with this little mirror walking around my house. He is showing me how to reclaim a child like joy for the simple and small things in life, to revel in the surprisingly good. Yes he has his incredible lows for the small disappointments in life, and watching him has taught me to own and laugh at my own response to life not going according to my plan.

Coming soon: Part II, Diagnosis.

Susanne, Kim's sister, is our latest SpiroChick. She also blogs at Adventures of a Soap Artist.

Happy Mother's Day!

2010-05-09T10:58:00.001-07:00

It is Mother's Day and I woke to wonderful gifts from my daughters, an illustrated book and a beautiful mobile of ribbon, Shrink Art, beads and fabric flower petals. The gift of creativity is very much intact. My best gift is the progress we've made in our fights against Lyme.

Lyme disease is tough. The fatigue, joint pain, headaches, cognitive and neurological challenges wear you down. For a mother with Lyme, the challenge can be especially emotional if you're not able to do all you would like. From reading to playing, cleaning to cooking dinner, all have taken a hit at one time or another; most daily. And for those of us who have passed this disease unknowingly to our children in utero, it can be especially heart wrenching as we watch our children face the challenges of this disease on their own. From their tenuous beginnings as preemies, to their own daily physical, cognitive and emotional challenges, it breaks our hearts. I know. Both of our daughters have been fighting this disease since before they were born. It is all they've ever known.

A doctor once said, "We would never wish something like this on a child, but kids that endure grow to be pretty special adults."

We have seen this in our daughters' perseverance, compassion and zest for life. Just last week, our youngest strapped on her roller blades and helmet, grabbed a bag of dog treats and our Border Collie's harness, tossed a treat down the hall and held on for the ride of her life! As we rescued the dog, we applauded her tenacity, her love of life.

And so today, we celebrate all of the amazing women who have touched our lives and the lives of our children. Our inspirations each and every day! Wishing you much love and joy this Mother's Day!

Spreading Awareness

2010-05-03T00:25:00.000-07:00

I feel like I've been M.I.A. from SpiroChicks lately. If you ask my husband he would probably tell you I've been M.I.A. from everything in life except Lyme disease awareness.

I have been working on the Paint May Lyme Green campaign obsessively for the past two months. It's been a CRAZY ride and I never expected it to lead to where it has.

I am in Los Angeles for the second time in a month, unheard of for me. I feel like I live on my brother's couch, luckily it is a comfy one!!!

Anyway, I can believe how successful the PSA campaign has become. On Thursday April 29th I found myself in a 4,000 sq foot studio with a full production crew and seven celebrities all there to help spread awareness by making Lyme disease public service announcements for the web and television! AMAZING!!!

We filmed 18 PSAs! We aren't done yet either! We won't have the studio or the full crew, but we are going to film a few more PSAs and interviews with more stars later this week.

I am so thankful to everyone who has donated to this project. We are making big strides for awareness this May.

Check out all the PSAs we have posted so far on
Lymenaide's YouTube Channel.

Please share & re-post the PSAs to spread awareness. Also check out Lymenaide to read more about what we've been up to and to meet the celebrities who are lending their voices to help spread Lyme disease awareness.

DONATE to the project. The PSA project is only possible because of donations. This is a grassroots effort for the Lyme community, by the Lyme community. Together we are making a difference!

LINKS TO DONATE

TAX-DEDUCTIBLE DONATIONS THROUGH PANDORA

DIRECT DONATIONS TO LYMENAIDE

-Ashley

Lyme Policy Wonk urges all patients to write to Connecticut Attorney General Richard Blumenthal

2010-04-30T21:22:00.000-07:00

SpiroChicks co-founders Alix and Kim with Phylis Mervine, founder and president of CALDA and Lorraine Johnson, executive director of CALDA and author of the Lyme Policy Wonk blog.

Lyme Policy Wonk Lorraine Johnson spoke at the CALDA conference last Saturday in San Ramon. She started out by showing scans of her own brain--one from 2002 with extensive hypoperfusion and another taken after two years of IV Rocephin treatment showing marked improvement. I'd say she's a walking endorsement of long-term antibiotic treatment for Lyme.

She went on to talk about the antitrust lawsuit filed by Connecticut Attorney General Richard Blumenthal against the IDSA for their guidelines for treating Lyme. The guidelines that are strongly against long-term antibiotic use and even deny the existence of chronic Lyme.

"The basis for investigation was that if you’re a larger organization and you put out guidelines as mandatory, almost like a law, and it interferes with patients being able to get treatment, antitrust laws say you have to play fair, accept multiple points of view, and not have conflicts of interest," Johnson said.

A settlement was reached and it was agreed that the IDSA would review the guidelines. According to Johnson, the process was not fair. "They selected a panel that would favor their viewpoints: all members were part of the IDSA. They didn’t select any doctors that treat chronic Lyme." She also pointed out that ILADS submitted 1600 pages of evidence including 300 pages of analysis and still the IDSA said no changes were necessary.

On Johnson's blog she says it even more strongly, "They never expected the guidelines to change, stacked the panel, paid the ethicist, ran the process, and achieved a foregone conclusion which 'validated' their guidelines. Seems like the IDSA fat cat ate the canary."

"This is a flagrant violation of the Settlement Agreement with the Connecticut Attorney General Richard Blumenthal regarding voting procedures. Large medical societies should not be above the law," she added.

Johnson urged all Lyme patients to contact the Connecticut Attorney General urging him to enforce the settlement agreement with the IDSA and require a re-vote. Here's the contact information:

Connecticut Attorney General Richard Blumenthal
FAX: (860) 808-5387
Phone: (860) 808-5040
email: attorney.general@po.state.ct.us

For more on this, check out the Under Our Skin blog, or read the full IDSA report.

IDSA vs. Lymies

2010-04-23T00:31:00.000-07:00

Yesterday the IDSA announced their verdict of the “Final Report of the Lyme Disease Review Panel”.

Based on its review of all the evidence and information provided, the Review Panel determined that no changes to the 2006 Lyme disease guideline are necessary at this time.

Were we surprised? No, I don’t think that most of us were surprised at all. That doesn’t mean that we weren’t disappointed.

Does this decision, if you can really call taking eight months to decided to do nothing a decision, mean anything? I’m not sure.

I would hope not. I hope that it just means we are stuck in the same unfortunate position we were in before. I know that sounds bad but honestly I hate thinking about what else this “decision” could mean.

More proof for the disbelievers. More fuel for the insurance and disability denials. More people not being diagnosed, being misdiagnosed and being ignored.

So what do we do?

We posted all day on facebook and twitter commiserating with our fellow Lymies. I’d hazard to guess all those posts went more or less unnoticed by our non-Lyme friends and followers. This is not news in their world.

What may not have gone unnoticed was the number of profile pictures that suddenly turned lime green. I know that I have had more than one non-Lyme friend comment on my new profile shot!

This is the answer, this is how we fight back. Egging the IDSA building or somehow infecting the committee members with Lyme sounds great because we are pissed off. However, these are not realistic or appropriate actions.

We need to fight back by telling our story louder than theirs. The importance of this May’s awareness campaigns just increased exponentially.

Our side of the story needs to be more compelling, more interesting, more personal and more believable. This shouldn’t be hard, I mean seriously, how many people do you know who are going to sit down and read anything that the IDSA said?

I’m sure more of your friends and family will stop to look at your lime green profile shot.

In a competition between posting the IDSA guidelines or your Lyme story, it is going to be you that they choose to read about.

Is the IDSA decision on Lyme going to get any airtime on television? Maybe a little. Is anyone going to notice? Only us Lymies.

How about the Lyme PSAs we are making? The ones with real people and celebrities who are suffering from Lyme or know someone who is suffering from Lyme. I guarantee more people will spend their 30 seconds watching that, and through it they will hear our message.

Yes, the IDSA decision is a setback for us, but we need to continue to move forward. Join us this May in spreading awareness and exposing the truth about this devastating disease.

What You Can Do (colored text = links):

SpiroChicks

How do you know?

Hospital Tales

Tidbits From Practitioner Byron White's 9/04 Interview

What To Eat When You "Can't Eat Anything" Part 2: Recipes, Tips and Tricks

What To Eat When You "Can't Eat Anything Part" 1: Restrictions, Rules and Diet Rotation

Better Living Through Lyme

Guest Post: The Thief Inside of Me...

How do you think about your health?

LymeLight Foundation: First Foundation to Offer Treatment Grants for Patients with Lyme

Guest Blogger Bob Cowart: Sleepless in Berkeley

If You Give a Lymie Some Laundry

Coming Out of the (Lyme) Closet

Goldilocks and The 3 Organic Shampoos

MayDay Lyme Awareness Shirts

Lyme Disease Awareness T-shirt

Lyme Disease Awareness Month is rightaround the corner!

The Solo

Guest Post::Tips to Help Prevent Your Dog from Getting Lyme Disease

The Perfectly Abnormal Condo

I Don't Want a Band-Aid

Thus happiness is a gift ...

Working on Your Degree to Become a Professional Patient?

Are You a Professional Patient?

Test, Baby, Test

The Ozone Itch

A Valentine's Wish

The Chronic Badass

Would the movement to ban perfume, cologne, and candles in public places please commence!

New Year's Resolution: Love and Gratitude

Pamela Weintraub calls the Chicago Tribune article a "sensationalistic hatchet job"

Chicago Tribune Article and Response

The Power of Caring

So grateful for my Lyme friends

Community

One Big Step for this Little Lymie

Holy Crap, I'm Getting FAT!

A Birthday

Lyme Patient Groups Withdraw from Institute of Medicine Conference

Top Lyme Doc Says Antibiotics for ANY tick bite

The Semantics of Lyme

The New Super Mom?

Susanne's tips for feeding your gluten free family

Tender loving care for Lymies

Lyme Beauty

Life Lessons Learned

Udi's to the Rescue, Sweet Stuff

A Bit of Mourning

A Perfect Example

Dramatic GI changes with Progurt

Walking On

Diagnosis

When Borrelia burgdorferi knocks on the door of your immune system

Happy Mother's Day!

Spreading Awareness

Lyme Policy Wonk urges all patients to write to Connecticut Attorney General Richard Blumenthal

IDSA vs. Lymies

May is Lyme Disease Awareness Month, Let’s Get Heard!

Lyme Disease Awareness Month is right
around the corner!

May is Lyme Disease Awareness Month,
Let’s Get Heard!