Well, I was diagnosed this year and seems I've had it since 1979. As a child my symptoms (that no one could figure out) were chest pains, bells palsey, strep throats. Symptoms changed over the years and were dealable. The past year however symptoms of confusion, bouts of severe disorientation, feeling drunk and confused, dizzy, not being able to process thoughts, or sentences, forgetting how I got places, mental exhaustion, severe fluid retention, hand swelling and numbness, numbness and 'pins and needles' in my legs, feet falling asleep for no reason, stumbling, lots of others really, but those are the ones most difficult for me to deal with.
I was treated with doxy and azithromycin at first for about 2 1/2 months but my stomach couldn't handle it. My LLMD then switched me in intramuscular steptomyacin (1 gram 2 x s per week), its a very non standard protocol but he's done years of research finding many links with mycoplasm infections and lyme, and steptomycin is the main drug for tuberculosis, a mycoplasm, so he's treating with that and isonizide. I did that for about 3 months and was doing pretty well and decided to go off ABX and do natural (supplements, acpuncture and chinese herbs). I felt great for the first month, then went downhill, fast, almost as bad as I was prior to meds at all. I'm back on the meds a month now and it's a much slower process this time. It's all very frustrating. I don't feel 100% comfortable that this is the best route for me. I have an appt at Mayo next week so we'll see if anything comes of it or if they decide to treat differently. I really feel I need IV ABX, but my LLMD does not accept insurance and I can't pay the cost out of pocket. My insurance is accepted at Mayo though so I'm hopeful that they will go that route, but I'll kinda be surprised given the issues with treatment and insurance.
What about you?