I've been on 600 mg of Rifampin for a good 3 years. Honestly I've lost track. At the suggestion of another Lymie who only finally kicked Bart when she went on much higher doses, I asked my Lyme doc to increase me and he did.
I believe I've kicked Lyme to the curb for now, as background info, with 16 months of IV antibiotics. I've had no noticeable Lyme symptoms for months now, though I do have Myasthenia Gravis so I am quite disabled from that.
Since I went from 600 mg to 900 mg, I have been sick. Just today I thought maybe I don't feel well from the Rifampin increase. These are not my typical MG symptoms, it feels so much more like a Lyme herx.
I'm kind of confused because when I have a Bart flare, usually I have burning soles and fingers and I'm not having that. I'm extremely fatigued, sleeping a lot, fuzzy brain, head pressure, kind of achey all over, off balance, a little shakey.
Does this sound like it could be from going up on the Rifampin, even though I wasn't having any of these symptoms from it before? I haven't felt like this in ages, since I stopped having Lyme herxes. I'm so confused because it doesn't feel like the typical Bart flare to me.
I know this is all so ambiguous, and there is no clear answer, but I appreciate anyone's experiences as I'm really confused.
Posted by seibertneurolyme (Member # 6416) on :
Tracy,
The most rifampin hubby ever took was 600 mg I think. But I do know that many docs think rifampin -- especially in combo with other meds -- can work on bart, lyme and babesia all.
Also it is the 2nd treatment after doxy used for ehrlichia/anaplasma in chronic cases. So maybe it is not working on bart but some other infection.
If you can stand it I would tough it out and continue on the med as obviously it is trying to do something. I do not think what you are describing is simply med side effects.
Bea Seibert
Posted by Tracy9 (Member # 7521) on :
I can definitely take it...it's not all that bad. I guess I am just hoping this IS from the Rifampin and I'm not relapsing or anything! I think it is.
Posted by CD57 (Member # 11749) on :
yeah I think people have been taking up to 1800 to get rid of bart. It just seems to aggravate it at 600-900 but may actually kill it at 1800.
Posted by BoxerMom (Member # 25251) on :
This would be herxing for me. After five years of abx, I need very high doses to herx and improve.
I agree that it doesn't sound like typical Bart herxing. But it's hitting something.
I'm currently herxing like that on lots of anti-protozoan meds and herbs. And I'm feeling really good in between herxes. Really good.
Keep going if you can. See you at the finish line!
Posted by CD57 (Member # 11749) on :
what's your latest Boxermom? -- as in treatment?
Posted by Tracy9 (Member # 7521) on :
Thanks for the reassurance! No problem continuing on.... I realize I should probably go higher still.
Posted by Kern33 (Member # 36267) on :
Tracy, would you mind giving us an update how you have been doing on increased doses?
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