Haven't been here for a while, thought I should update.
I was diagnosed with late stage neurological Lyme disease and Lyme arthritis in August 2012, put on 2-4 antibiotics, and went downhill. I ended the antibiotics in Feb. 2104, after aprox. 1.5 years.
I have been, largely, offline for the last 2 years.
Some reflections. I am very grateful. I am grateful to live in one of the 6 states that allow for long term antibiotic therapy for Lyme disease. I am grateful that I had a Lyme-literate medical doctor that was covered by insurance. I am grateful that I had insurance that covered the treatment. And I think we gave it a fair try. However, antibiotic (and herbal) therapy did not work for me - I got worse.
In my time online, I noticed that while about 1/3 of the people with Lyme improve on antibiotic treatment, the other 2/3's struggles. I noticed, 1/3 went up and down on the treatment...and 1/3, like me, got significantly worse on treatment. In my time online, I tried to go to bat for the third of us who got worse...but I found that the Lyme disease community's emotions were just so raw, that as intelligent as people were...they were years before being ready to talk plainly about Lyme disease. I was disappointed in the fear mongering...and in the massively expensive treatments that people felt you must have or die (especially since my young adult sick kids would never be able to afford it). I left.
I still ask the open question...maybe Lyme is NOT a bacteria? I figure Lyme is a living thing, and as such, *something* will kill it in all people (not a popular point of view, yet logical nonetheless). Maybe the third that get worse on treatment have autoimmune conditions?
Perhaps the most pointed question I have is this...just because my blood shows antibodies to Lyme, that may not necessarily mean that I have an active infection of Lyme. Incidentally, my blood shows antibodies to all kinds of things I have had in the past...and I am sure many other people's do too.
It took until April 2014 (2 months after stopping the antibiotics) for all the horrible movements to stop...and I did really good for a while. I was exercising, walking, doing yoga, eating well...and then crashed. I still have ups and downs. That said, I no longer feel like I am dying. Some would say I still had Lyme (I might have thought the same listening to another's story), as grateful as I am to have been afforded what I consider the best of the best treatment...I am equally grateful to be off it. I do not think I have Lyme...or, if I had, that it became autoimmune.
In the last 2 years, I stopped focusing on my illness. I no longer need a name for it (would like a name, but don't need it). Instead, I turn my attention to the warmth of the sun on my face...the laugh of my grandbaby, and the beauty of the people and world around me...and I have been much better off for it. I have a new doctor, she is just as great...and I remain grateful.
Meds I am taking:
Thyroid T3
Baclofen (for tightness/stiffening)
Cortef (yes, an immune suppressant...my chronic inflammation has been going down)
Taurine (an amino acid I don't seem to make well)
Probiotics (not digesting most foods)
Digestive Enzymes (not digesting most foods)
I have been gluten free for a while, but am going grain free.
Best of luck to everyone on their journeys to reclaim their health.
