Saturday, September 22, 2012

In which we try to attack the Lyme, that we don't "medically" have

As many of you know, I have been suffering from ever-worsening chronic pain and fatigue for a number of years. Doctors have sent me to physical therapy, have put me through numerous tests, and finally have prescribed me symptom-managing drugs. I suspected that I might have Fibromyalgia. This past Spring, one of my physicians official diagnosed me with the Syndrome. As a result of the diagnosis, and her experience with my leg/hip/back pain frequently making it difficult for me to walk long distances, she even signed a request for me to get temporary disability tags for my car.

When discussing the diagnosis and related health issues with some friends on Star Island this Summer, several of them vehemently stated that I have Lyme disease. They asked if I had been tested. There are two insurance-accepted tests for Lyme disease, ELISA and Western Blot. I tested negative on both in the last year. These tests look for a specific number of serum markers. There are more comprehensive tests that my friends encouraged me to look into.

When I returned from vacation, I had a sleep study scheduled. I have been getting more sleepy during the day over the past year. No amount of sleep seems like enough. It took several weeks to get the study results back to the provider who ordered it. She told me that there is nothing going when I sleep that shows anything abnormal (very little snoring, no apnea, normal REM cycle patterns). However, during the day study I showed an extreme ease in falling asleep. Sleep affinity is measured on a scale of 1 to 20. 1 being virtually asleep all the time, and 20 being too awake to fall asleep. My score was a 6. To manage my wakefulness, we ended up going with Aderall. So basically, I'm on amphetamines now, on top of pain meds, muscle relaxers, NSAIDs, and anti-seizure drugs to get rid of shooting pains and tingling.

During one of my check-in visits, I mentioned to my sleep doctor that I was thinking of getting a comprehensive Lyme test since all of my symptoms, including the "idopathic hypersomnolence" that she diagnosed, fell in line with Lyme. Turned out that she had some of the test kits from NeuroScience, Inc. So we drew the blood samples and sent them off to their lab.

My doctor called me on a Saturday morning to tell me that she got my results back. She knew how important this was to me. If I have an infection that is treatable, that is so much easier to accept than having a Syndrome that I'll have for the rest of my life. She told me that her interpretation of the results was that I definitely have a long standing case of Lyme. We agreed to meet later in the week with someone from the lab on the phone to confirm our understanding of the results.

That evening I watched "Under Our Skins" a documentary about Lyme disease and some of the controversies around its diagnosis. There appear to be two vehement camps in this discussion. The Establishment camp consists of the CDC, insurance companies, and most infection disease doctors, who state that Lyme disease is easily detectable with the two tests they recognize and that all the other diagnostic tools out there, or different interpretations of the two recognized tests, are flawed. That patients who do not show as 'positive' on their tests do not have Lyme, but are suffering from something else and should not be treated like they have Lyme.

The other camp of doctors and patients claim that there are multiple strains of Lyme that will not test positive with the narrow definition proclaimed by The Establishment. These doctors, many of whom become members of the International Lyme and Associated Disease Society (ILADS), stand by more comprehensive testing and a less rigid interpretation of Western Blot and ELISA test results. Most of the people who end up as their patients have been bounced around from doctor to doctor, diagnosed with all sorts of chronic syndromes and diseases that have to be suffered through but that cannot be cured. Once these patients end up with an ILADS provider, they are examined for THEIR SYMPTOMS first and are given the standard AND more comprehensive tests to CONFIRM a diagnosis of Lyme or related infection. If this (non-Establishment-based) diagnosis holds up, these patients are treated intensively for an infection that they probably have lived with for years and years. Many to most of these patients GET BETTER with this treatment. Very few suffer lasting side effects from the treatment they are given.

I am not one of those patients, being treated by an ILADS provider using strong doses of antibiotics and supporting supplements to attempt to drive an infection from my body. I received fair warning that there may be uncomfortable side effects during treatment. The antibiotics may make me nauseous, headachey, or give me diarrhea for one. Once the antibiotics start working, the die off of the organisms will release their toxins into my system en masse. So, it is likely that I will feel worse before I see any benefit to the treatment. As rotten as I've been feeling, it is worth the downside to me. Primarily, I want to stop the progression of what has been happening to my body. The last year in particular has been extremely tough. I have even toyed with the idea of going on full disability, which I really can't afford to do.

I took my first dose of mega antibiotics last night with dinner. I haven't been hungry enough today to eat enough food to take my next dose. Hopefully, I can do that soon. Also, I hope to check in hear at least weekly to document the progress of the treatment. If anyone is still checking in here, wish me luck.


radiantlisa said...

Luck. All the luck in the world to you!

Anonymous said...

Best of luck!

And do keep us posted