Herxing or getting worse?

I've been sick for 5 years. Two years ago I was diagnosed with Bartonella (positive IFA and PCR) and possibly Lyme, though I never had a positive Lyme test, only an equivocal Elisa. My Quest, DNA Connexions and Igenex Lyme tests were negative. (I had a few non-Lyme specific bands on the WB.) I had most of the symptoms, though, (no EM), and a history of tick bites. I treated with herbs for more than a year. They helped me get to about 75% and then progress stalled, so I recently started antibiotics for Bartonella treatment. My new LLMD gave me doxycycline and Biaxin for 6 weeks, which I did well on, then she changed the doxy to Rifabutin about a month ago.

A week after I took the Rifabutin, I started feeling worse and have been feeling just terrible ever since. All the symptoms I had that seemed to be fading have returned. Internal vibrations, tremor, twitching, numbness and tingling, gastritis, chest pains (costocondritis), fatigue, and muscle weakness, heart pounding, breathlessness, nearly constant migraines, and more. This has been going on for weeks now and I'm having a hard time dealing with it. At this point I'm wondering if I'm just getting worse. Will this ever end? I'm also wondering why I would be herxing so much if I don't have Lyme. I read in Buhner books that Bartonella doesn't cause much herxing.

My questions are, am I herxing? Or could this be something else popping up? I tested negative for Babesia and other TBDs, both IFA and PCR. How long does it take before I feel any improvement? I'm detoxing as much as I can but am feeling so depressed and discouraged I almost want to give up. (Is that a herx symptom?) I can hardly make it through the work day even though I have a desk job and can often work from home. I don't see the LLMD for another month and just needed some support or feedback that this is normal. Any tips for getting through this? Also, if I do have Lyme, are these particular antibiotics doing anything against it? Could killing Bartonella make Lyme flare up? It's all so confusing.

You are herxing like H-E double hockey sticks, LOL!!!

That whole thing about bartonella not causing herxing is based on the extremely narrow medical definition of a herx and that bartonella doesn’t have something that borrelia does. I can’t remember what it’s called. Somebody help me here. Buhner explains it in the bart book.

Anyway, what we call a herx is worsening of, return of, or oncoming of new symptoms in response to treatment. So, yes. You are herxing big time.

Girlie has talked about her herxes from Rifabutin, and she has treated bartonella before as well. Apparently, Rifabutin is very effective.

Rifabutin is very effective for bart.
I suspect it’s doing a lot of killing.

I have a pattern of herxing on my third day of Rifabutin (I pulse my abx so I have breaks)
I don’t herx every time but it’s almost always on day 3.

Focus on detox for the next several days - try to rest.

Maybe a call to your LLMD is warranted ?

I know how you’re feeling... sorry you’re suffering... herxing like that makes us question everything
Please give us an update later??

I agree I think you’re herxing which is a good thing! I’d step up your detoxing. I’ve been feeling crappy lately too. I did nine full months of antibiotics and am now on month two of the Cowden protocol. I thought that after doing nine full treatment months that I would have gotten most of the bacteria out but there are days when I’m on this new protocol that I feel absolutely awful. I seem to Herx on every 6th or 7th day. Let’s all keep fighting and hope that our best days have yet to come.

Thanks so much for the responses. It helps to hear from people who understand and have been there. It makes me feel better that most of you think this is a herx. I get to feeling sometimes like I'm always going to be sick. It's hard to even imagine feeling better sometimes when I'm feeling really bad. I'm sure you can relate.

I forgot to mention that I just had to take some Diflucan for a yeast infection caused by the antibiotics. I never had candida and always tested negative for it until I started antibiotics. I heard candida die-off can cause herx-like symptoms. That could be why I'm feeling extra bad right now, but doesn't account for the several weeks before that.

WalkingbyFaith, I'm glad I could help you. I've read some of your posts and know how hard you've had it. Wishing you healing.

Girlie, thanks, I'll try to ramp up the detox, though I'm doing a lot already. I take it Bart is a real SOB. I never knew it could be this bad on its own. I thought I had Lyme until all the testing but it's looking like maybe it's just Bart. I'm curious, why do you only take the Rifabutin every other day? Is this what's meant by pulsing? I wish I could cut back on it if it would help me function better. I take 150 mg mornings and evenings. Do you take it once a day?

Quin, I don't notice any odor from Bart herx at all though I've heard this before. I always have stomach pain, herxing or no, so it's hard to tell if mine is a herx symptom. I do have itching just recently, never before, but I thought that might be the candida. My LLMD says this antibiotic combo is what Dr. M (Bart specialist) uses, so I hope it will be effective. If this is a Bart herx, I'd say it's doing something. I'm glad you've had some improvement.

HeartsInPain, thanks for the encouragement! Hope you're feeling better soon.

Thanks Girlie, yes, I'm taking the Biaxin as well. I'll have to read more on pulsing.