posted
I added this post to a dying thread a couple of days ago, but would like a little feedback, if anyone is in the mood... Thanks
I was told a 4 month run of Rifampin along with Biaxin should knock out Bart. High doses. I was also told that it doesn't hide like lyme does and once you treat it, that's it. I'm going with that plan. I won't make it through any more than that, anyway. My poor bod really needs a break.
I am a little over a month into it and I'm as sick as I have ever been. The whole wang-dang-doodle! My liver seems to be tolerating it well enough though, according to my doc who encourages me to keep going.
However, just because my lab work looks OK, that doesn't mean I'm "fine". I honestly don't think my doc has a clue as to what I am up against.
Lyme and co have been in my body for a long, long time. Has this doc just not dealt with long term symptomology??? I mean, I just can't friggen' believe that when I talk about my pain and fatigue and Bizzare sensory stuff, I get a blank stare. I swear to god!
I'm dying in pain, can't do opiates at all, and this doc gives me valium. The last ditch effort for opiates was ultram, which triggered one of the worst migraines I've had in months.
So, I can't or won't pop valium and besides, it doesn't do much for the swelling and stiffness...
I'm in and have been in a bit of a bind dealing with my pain. Ibu in large doses can help with certain aspects- tooth pain, hormonal cramps gone berzerk, but it does nothing for the rest of it.
Do we all have Fibro from being infected with lyme? I mean what the hell??
I was so rudely blown off by a neurologist last week, that I just could not even believe it. I was flabber-gasted. I've heard y'all mention such treatment, but now I know first hand. WOW. What an additude! I want to argue and send him a letter, but what's the point?? His mind was so closed. I need to just shake it off and keep moving.
After a year of beating the sage brush, I think I've finally got a good crew on board. I don't know what to do about the lousy lyme doc, but my body needs a break from the antibiotics, anyway. I may revisit the neurology route, but for now I'm focusing on sleep issues and a mood gone so completely haywire, I just sit back and hold on for dear life...
What do I think about Rifampin and Biaxin? All I can tell you is get ready for the ride of your life. Make sure you are in a safe place. Strange things can happen.
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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posted
PS: One thing I have not figured out yet, is if all this pain is herx pain or something else. Does anybody have herx pain 24/7 around the clock?? My pain levels have gone up with bart treatment. Way up.
My neck and chest are also covered with red splotches- all new within the last year. Doc says sun damage or "shrug w/ blank stare".
Man, I'm getting sick of that blank stare!!!!
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I definately say herx! The first 6 weeks of Bart treatment were pure hell for me. I was in pain, I twitched, jerked, shook, spasmed, cried, raged and could not think a coherent thought. It was miserable.
I never took a break from treatment but a couple of times I did cut my dose in half, which helped some. I also got the splotches your talking about on my neck and my chest so yeah I would definately say bart related.
Sorry you're having such a tough time. All I can say is stay the course and it does get better!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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