Perhaps one of the reasons lyme is so hard to deal with is that it falls between specialties. Is it an infectious disease? An auto-immune problem? Are you simply sick in the head as many will claim? Lyme literate physicians come from many walks of life, and the treatment for lyme itself necessitates recovery — long term antibiotic therapy can lead to yeast overgrowth and other syndromes that may themselves cause fatigue and malaise.
So far (as of 1/1/08), I have discussed or received treatment for different aspects of my disease and its treatment from a: massage therapist, homeopath/naturopath/MD, cranio-sacral therapist, infectious disease specialist, kinesiologist and lyme literate physician (formerly family practice, now lyme specialist), neurologist, ear nose and throat doctor, and several pediatricians (to learn about whether my children could be infected and how it might have occurred). In the near future I plan to see a dentist (since my teeth have turned black, presumably from the antibiotics) and begin yoga for strengthening, stress relief and immune support.
At first, I found that I had to carry around a packet of my test results and prove to each doctor that I had lyme. I also found my spreadsheet invaluable and brought printouts of it to almost every appointment. Every one of them (excepting the lyme literate physician and massage therapist) approached me with an attitude that implied they thought that I could be one of those poor folks who thinks they have lyme when they don’t. While this skepticism is valuable in helping folks who are in that situation, it is intimidating to have to prove something rather than simply to be able to say “My doctor says I have lyme, can we now discuss what comes next?” I quickly learned which test results to emphasize when telling my history.
Which physicians and therapists/therapies should I spend money and time on? How in the world do I coordinate amongst them all so that they work in synergy instead of simply working in parallel (best case) or against each other (worst case)?