I am going thru a hellish herx on Rifampin for Bartonella. A primary symptom is a horrible nerve agitation that is really difficult to describe - It feels like my whole electrical wiring system is highly agitated, and it's accompanied by shakes and by periods of light tremors in a hand and head and neck. Has anyone had this before, and did anything really help? Xanax actually provides some temporary relief.
Wow, this disease and treatment are not for the faint of heart...
Posts: 364 | From California | Registered: Sep 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I had a lot of nasty neuro stuff with Bartonella (though don't remember which came first: the symptoms or the rifampin).
I only know I had facial tics, numbness, tremors, and seizures. And you're right: not for the faint of heart.
Only time and continued treatment seemed to help...and it definitely did. During that period, though, I had to limit my driving a bit and was definitely on high-alert.
Once that initial symptomatic period ended, I haven't had any of those symptoms again.
Hope this gives you some encouragement and I hope you find some relief soon!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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I have to agree with Andie, treatment with rocephin was the only cure for me.
I had very similar symptoms. The xanax does help and so does Co Q10. Try your best to avoid over stimulating your CNS. It is hard to do, but you will find that stimulus will make it worst...
Try and find some down time where you can intentionally focus on relaxation. This will give your mind and body a break.
I hope this helps,
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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posted
Thanks both of you - so much. I really needed some hand holding today. I thought Tindamax was bad, but I have to say this is a lot worse. As you mentioned Andie - the neuro symptoms on the Rifampinn have not exhibited in years - so the herx. definetely stirs the turd so to speak...
again, thanks so much.
Anneke
Posts: 364 | From California | Registered: Sep 2005
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posted
I am so confused! My daughter's llmd said that there is no herxing with bartonella. He indicated that she would simply start feeling better! She started rifampin (5 days) and zith (2 days) several weeks ago and has been herxing. She is also on bicillin for lyme, so we assumed the herxing was from that, though the timing seemed to be more in line with the rifampin treatment. Either was, she is still not feeling better! I would like to hear what your doctors have told you regarding bart herxing. Cindy
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Someone already posted this here on LymeNet and then I saw it on another list but I thought it was neat & relevant~~~~!!! ********************************
If you scroll down to the bottom of this page, there is a group of four illustrations, before and after doxycycline treatment for six months....pretty striking response to treatment (longterm).
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I'm on Rifampin and herx like crazy, but I rarely herx with Lyme medications (although I test positive for Lyme and all the coinfections).
I asked my two LLMDs about whether there can be such a thing a Bart herx. Both seemed to think so.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Yep I meant Rocephin, : ) I change words too sometimes,,,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Know exactly what you mean. Am going through Bartonella treatment too and it's been the worst so far.
I'm on Levaquin and Septra everyday orally and mostly hangout at home.
This treatment kicks butt.
Was on this same treatment protocol but relapsed after 2 months when I decreased meds. So back to square one for me. Do not pass go or collect $200.
Mostly all neuro stuff and horrible head pain but I did get better the longer I was on the meds.
Hang in there!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6145 | From Columbus, GA | Registered: Jul 2004
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