I know this sort of post is generally reserved for my other blog, Lymenaide, but this is important. I was recently quoted in an article from the Chicago Tribune entitled, Chronic Lyme disease: A dubious diagnosis. I wasn't misquoted although the quote was slightly spun and definitely chosen for a specific purpose. The following is my response:
I started getting really sick in 2000. I felt horrible. I had breathing problems and my stomach felt like it was churning broken glass. I went to the doctor. She found nothing wrong with me but sent me home with an inhaler for asthma and a prescription for refills. It didn’t really help but I used it anyway.
In 2003 I was so sick it was hard to function. Every time I ate I would have to go to sleep, my body didn’t seem to have the energy to stay awake and process the food. The stomach pains that woke me up in the middle of the night were so severe I would ball up in the fetal position and cry. I was unbelievably constipated, my teeth were loose, my head was foggy, my heart fluttered like crazy and I never felt like I was getting enough air.
Over a period of three months I saw four doctors, two specialist, a nutritionist and a wellness coach. In over 15 appointments, despite my symptoms, no one found anything wrong with me.
One doctor gave me a prescription for something he said would help with IBS, irritable bowel syndrome. Another gave me a drug for acid reflux. There was another prescription in the last of the three months, I don’t remember what that one was for and I didn’t take it. By that time I was very skeptical of these doctors who kept telling me they could not find anything wrong with me but then handed me a prescription anyway. I remember being given a lot of samples of Nexium, a drug for acid reflux. I also got a lot of free birth control. Why do these doctors have so many free samples…
I stopped seeing “medical doctors” and started seeing “alternative practitioners”, at least they could recognize that I was sick. Waking up with a body temperature so low that I was actually hypothermic was not a sign of good health. My dark hair had turned mousy brown and my skin wasn’t tanning anymore. The MD told me I was high strung and suggested I see a therapist. The ND started checking for allergies and other pathogens.
I had a surprising number of food allergies/sensitivities. I was also filled with candida and bacterias like campylobacter. This was likely causing me to suffer from Leaky Gut syndrome and could explain many of my symptoms.
I was really annoyed. Why hadn’t any of the other doctors that I had seen in the previous three years found anything wrong with me? They had failed to even recognize that I was sick despite my symptoms. They seemed to be slaves to the test results printed on paper. They couldn’t see past those numbers to the girl sitting right there before them and acknowledge that she was in pain. The paper told them that I was fine, end of story.
Sadly this is the same story that almost all Lyme my friends tell. Years being left undiagnosed or misdiagnosed. Not seen and not heard because our doctors had their noses buried in those crisp white pages filled with numbers that according to them held all the answers.
Twelve years later I do have some shiny white paper with numbers that say, “Hey idiot, this chick has bacterial infections, parasites, amoebas, hormonal and thyroid imbalances, heavy metals, molds, yeasts, food intolerances, and among other things problems detoxing the toxins her body is constantly spewing because of it all”.
There is a complication though. One of those infections I have is borrelia burgdorferi, Lyme disease. While my illness is chronic and I have been temporarily disabled by the disease, the greater part of the medical establishment still ignores me because the IDSA, Infectious Diseases Society of America, says there is no such thing as chronic Lyme disease. Lyme disease according to the IDSA, and therefore the insurance companies, can be effectively treated with 10-28 days of oral antibiotics.
Yes, I have Lyme disease. That is what the illness I have is called. My illness is not however, isolated to that one single infection. Thankfully for me and hundreds of thousands of other Lyme sufferers out there, there are wonderful doctors who recognize our pain. They know that the illness we are suffering from, while it may be called simply Lyme disease, is so much more than just that.
Unfortunately many of our doctors, our heros, are under scrutiny by the medical boards because their treatment exceeds the 10-28 days of oral antibiotics the IDSA deems sufficient for the treatment of Lyme disease. The IDSA slammed the door in the face of Lyme patients everywhere with their guidelines, and the medical boards are trying to shut our doctors doors as well.
When I was diagnosed I was told by my doctors that it would take a minimum of two years for me to regain my health. Two years that I was disabled but denied disability. Two years that I paid the majority of my health care costs out of my own pocket. Two years that has seen me go from a complete cognitive and physical disaster to a nearly healthy and functional human being both physically and mentally.
Would 10-28 days of oral antibiotics have gotten me to where I am now after nearly two solid years of treatment? No. There is no way that the IDSA treatment protocol for Lyme disease would have made me healthy. How do I know? I know because the actually Lyme part of my illness was never my biggest problem. Without having addressed my entire illness, I would not be on the doorstep to health like I am today. How could I be?
The IDSA guidelines state-
When Lyme disease is diagnosed and treated quickly, 95 percent of people are cured within a few weeks of treatment.
About the other five percent they say this-
The number of people who continue to have problems is very small. Most likely, their symptoms are related to one of the following:
• They never had Lyme disease at all and received the wrong treatment for their illness
• They had Lyme disease and another infection simultaneously and were only treated for Lyme disease
• They contracted a new illness unrelated to Lyme disease but with similar symptoms
• They have again been bitten by the tick that causes Lyme disease
Exactly! The reality is Lyme disease is not just borrelia burgdorferi.
I have to say that in my experience as a Lyme patient and Lyme activist 95% seems like an unreasonably high success rate. I have met hundred’s if not thousands of people now who have or have had Lyme. Very few of them were cured with only a few weeks of treatment. Those who were are the lucky ones who were actually diagnosed and treated right away.
The rest of us stewed for weeks, months and years before being diagnosed. By then the borrelia was firmly entrenched in our bodies and we were riddled with “other infections”. I can personally say that I had two blood tests for Lyme disease six months apart. Both showed evidence of a current infection.
The controversies embedded in the Lyme debate are mind boggling. The most pressing for Lyme patients is that many Lyme doctors are criticized and brought under investigation for treating the illness with long term antibiotics. The IDSA says, “Long-term antibiotic therapy for so-called chronic Lyme disease is not only unproven, it may in fact be dangerous”.
Was it not dangerous for those doctors to prescribe those drugs to me for illnesses they didn’t actually diagnose me with? Should they really have been just handing out samples like candy? Does my dad really need the high-blood pressure medicine he saw advertised on TV that his doctor happily wrote him a prescription for?
Lyme doctors are treating sick patients on a daily basis. They see us, they know us and they know the illness that we are fighting. They read those shiny white sheets of paper and make assessments about our individual health. They are prescribing what in their medical opinion is the best treatment for their patients.
Just like cancer patient that undergo chemotherapy, Lyme patients are told up front about the risks of long-term IV antibiotics. Just like the cancer patients Lyme patients regularly choose to take the risk with the belief that it will help cure them. Just like chemotherapy, the result does not always work out in the patients favor.
It should also be noted that not all Lyme patients are being treated with long term or IV antibiotics. Many patients are effectively treated with shorter courses of antibiotics, herbal antibiotics and with alternative treatments. Some don’t take any antibiotics at all. Yet we are all locked in the middle of this ongoing debate.
It is time for the semantics of Lyme disease to be brushed aside. The medical establishment needs to look up from the papers that are cluttering their desks and see the patients sitting right there before them asking for help. Recognize that these people are sick even if you don’t know what is wrong with them. Open your eyes. Your studies and lab tests can’t tell you everything. Science does not yet have all the answers.