Topic: Rifampin...Anyone take higher doses? Side Effects?
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
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.
Posts: 3528 | From US | Registered: Apr 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
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!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Tracy, would you mind giving us an update how you have been doing on increased doses?
Posts: 78 | From Germany | Registered: Feb 2012
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