I was initially diagnosed with Lyme in 2002 - I went on a powerful regime of oral abx and did very well and was in remission for many years. My sx were mainly arthritic.
This past October my DH found a tick on my hip. I never got the bulls eye rash and just to be on the safe side, doc put me on orals (amoxi and doxy). Well, I got worse and then the neuro crap started setting in. She did a CD57 and my level was a 19. So in late February, I had a PICC line put in and I am on 2g Rocephin once a day.
Fast forward to now - I have been approved by my insurance (so far) to continue the Rochephin until late May (so I'll have 3 months under my belt - doc wants me on this for a minimum of 6 months but we'll have to see what insurance says). I herxed terribly for the first month, which I totally expected, but now I'm just at a standstill. No better, no worse. So doc tested me for co-infections, all were negative, but she does not trust those tests, so she's adding doxy back in (oral - 400mg a day to start, then wants to get me up to 600). She also repeated the CD57 - it dropped to a 15. And my Vitamin D25 and D125 levels are way off - I cannot remember the numbers, but D25 is low, D125 is high.
I've doubled my CO-Q10, I take fish oil, diflucan (100 mg for two weeks, then two weeks off, then back on), my house looks like a pharmacy and I'm just so sick of this. Today is my birthday, I have a grandson on the way in June, and I just feel useless. I do work, but my work has slacked and thank god my bosses are realtively understanding. I also take Xanax (have had GAD for years), Atenelol for my tachachardia(sp?), Aciphex, Acidophilus...let's see did I forget anything?
Nobody understands. My DH tries, but gets very impatient with me. I want him to see "Under Our Skin" but he always finds an excuse not to. So I guess I'll watch it myself. THen I got the "Lyme Disease Survivors Guide" and, while it has great info, my brain fog is so bad I can barely comprehand all of the stuff in there - much less try to even think of where to begin! One thing I did get from that book was that, unless you have Lyme, you do not understand. You can be empathetic and care, but you will never understand.
I feel alone. I wear a piczee sleeve and everyone always asks "whats wrong with your arm?" then gotta go into the whole PICC line ting.
I guess I'm just having a "feeling sorry for myself day" - I normally go through life pretty well - I do sleep a lot, but I work, do some household stuff, manage the bills - anything to keep my brain working.
Thanks for listening and sorry this was so long...you guys probably think I should just go straight to the looney bin.