Posted 4/24/2015 8:48 AM (GMT -7)
I'm still waiting on some more testing before I go back to my LLMD--sleep study is this weekend and lower-extremity EMG is in two weeks (I had one last week, but they only did upper extremities--their bad).
I've been detoxing in the meantime, upping vitamins and supplements, doing daily epsom salt foot soaks and drinking apple cider vinegar (with the mother) "tea" (i.e., ~two tablespoons of ACV, a small spoonful of organic honey, and hot water). I think I've been herxing as I'm cycling between feeling somewhat ok and horrible (with all-over body pain, night sweats, really bad joint issues, even worse fatigue than normal, etc).
So I just saw my neurologist this morning. I've been with her for nearly three years (for migraines and headaches). This was the first time about seeing a LLMD. She believes in Chronic Lyme but very strongly expressed her skepticism of this group of doctors. She is worried they're going to "drain me" and said she doesn't understand why they don't take insurance (me: because they're using non-IDSA approved protocols) and that I should just go to the University of MD where they have excellent Lyme specialists (me: but they don't believe in chronic lyme!). I'm sure all of us have been through this at one point or another.
She then looked at my MRI from March and is concerned that I am developing MS. I have three lesions in the left side of the periventricular cortex. She says she has seen Lyme lesions and these are not Lyme but are indicative of demyelating disease (like MS). So I'll get another MRI in six months to see if I've developed any new ones. She also said that the numbness in my toes is not a Lyme symptom--I chose not to argue with her about that. She then pressured me into getting a B12 shot, which I wasn't against but don't see as having helped me. Her argument was that it can help restore my neurons even if it doesn't help with the fatigue.
Ugh. At this point I'm not even sure what to think. I'm far beyond worrying at this point (it took almost a decade for me to get there--low-dose Zoloft has really helped with this aspect) but I am curious as to what is going to happen doing forward. I also know there are people in the Lyme community who strongly believe that MS is really Lyme. I guess I just don't want to get on an ineffective treatment protocol (I've been on enough of those over the years). I also don't want to spend thousands of dollars if I don't have to. I guess I just need to wait and see how things unfold.
Okay, now that I've gotten that off my chest, I hope you all have a wonderful weekend! :)
30s F. Crohn's ileocolitis dx2/06. Proctitis dx 10/12. Arthritis dx9/09. GERD dx1/13. Asthma dx4/13. Raynaud's. Chronic headaches/migraines. Chronic chest pain.
Lyme: ER 7/14, confirmed 4/15 (IgM+ bands 23,37, 41, 93).
Remicade 75mg Nuvigil, 75mg Trazodone, 50mg Zoloft, Klonopin, Zyrtec, Maxalt/Botox (migraines). 30B probiotics, Vitamineral Green, turmeric, Vit D, B, Mag, Charcoal