posted
I started Rifampin a week ago for a confirmed case of Bartonella. Started with 300mg per day, and now working up to 600mg.
I am also taking doxycycline and Bicillin LA shots.
Since starting the Rifampin my muscle pain and stiff neck is going through the roof! Everything hurts - tendons, muscles, trigger points, neck, and my joint pain is also much worse, especially my knees. Also been having lots of stabbing pains and muscle twitching and teeth pain.
I am wondering if this is a Bartonella herx, or if the symptoms of my other infections are going crazy with the addition of a new antibiotic?
Anyone else had this experience on Rifampin?
My headaches are a little better on Rifampin. I have had chronic back of the neck/head throbbing headaches that radiate over the head and go behind the eyes for about a year now that have been getting worse and worse, but since starting the Rifampin, they are less painful, but the throbbing is still there, only milder.
I have been hoping that by treating Bart that I will finally start seeing an improvement in my symptoms, but not sure how long it takes to begin to see an improvement.
Any feedback would be appreciated, thank you!
Posts: 187 | From Connecticut | Registered: Jun 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry you are experiencing that intensity of pain and muscle "outrage".
What pops onto my screen: Massage may be needed to release "trigger point" that are all contorted, so to speak.
Thanks for your reply. Have been pretty good about taking my magnesium, but the muscle pain persists no matter how much I take.
I even did an IV magnesium drip recently and the muscle pain just got worse.
Last year I was doing trigger point acupuncture which was helpful, but my lung was punctured and I ended up in hospital with a collapsed lung, so never will do that again.
The stiff neck and muscle pain flare up with antibiotic treatment, but never get better. Its been three and a half years, and I cannot get rid of it with any treatment.
Massage does not get rid of the trigger points because whatever infection flares them, is still there causing havoc and I cannot pinpoint the infection. Lyme treatment alone does not help. Short one month treatment for Babs does not help either.
Have never been able to tolerate Babs treatment for longer than one month due to the meds killing my gut so the jury is still out as to whether its Babs or Bart causing the muscle pain.
I take NAC for liver support and it works well.
Posts: 187 | From Connecticut | Registered: Jun 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I had horrible pain on rifampin and lost my sense of touch and hearing. I couldn't relax on the drug and only slept out of exhaustion.
I stopped the drug. It turns out I have a gene that makes it IMPOSSIBLE to process certain drugs and rifampin is one of them.
Senses returned, but a horrible pain I got while on rifampin never left. It's a stabbing pain in a particular spot and it's been over a year.
Another thing to keep in mind is that bart is an infection that can build resistance to antibiotics, so any antibiotic may not be a cure, but will just bat back the infection.
Good luck.
Posts: 2839 | From California | Registered: Jul 2012
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posted
I am so sorry for your horrible experience with Rifampin, Judie. Thank goodness you discovered you could not process it and got off it.
I don't seem to be having any problems with Rifampin other than my symptoms are going crazy except for my headaches which are actually better, so I guess that it must be helping to a degree.
Posts: 187 | From Connecticut | Registered: Jun 2013
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posted
I also have a confirmed case of Bart. I have been in treatment for 4 1/2 years now. I am now going to a Bartonella specialist.
What you are experiencing was the same for me. What is going to happen after you are on Rifampin for about 2 months will blow your mind. So much inflammation it's unbelievable, but that is what is supposed to happen.
I did Rifampin for 3 months at 600 then did it at 1200 for the last 6 months, I took it with Biaxin. That is what it takes to get rid of Bartonella...
Another thing that happens is you lose your hormones because Rifampin makes them process quicker than normal. I had to go on adrenal support. The number one cause of Rifampin failure is adrenal fatigue.
If your doc isn't well versed in treating Bart correctly I would move on. I wasted 3 1/2 years going in circles under treating Bart.
Posts: 845 | From Northeast | Registered: May 2011
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-------------------- Female. Misdiagnosed with fibromyalgia for six years. Started treating Lyme in 2014. IgG positive for mycoplasma and clinically diagnosed with bartonella. Also have Hashimoto's thyroiditis. Posts: 32 | From New York | Registered: Oct 2014
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-------------------- Female. Misdiagnosed with fibromyalgia for six years. Started treating Lyme in 2014. IgG positive for mycoplasma and clinically diagnosed with bartonella. Also have Hashimoto's thyroiditis. Posts: 32 | From New York | Registered: Oct 2014
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posted
I'm taking T3 and T4 and it seems to make it so I need more thyroid meds because I have had to increase them. It's probably because I'm having a hard time with my adrenals. One more week left on Rifampin...I can't wait!
Posts: 845 | From Northeast | Registered: May 2011
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Thanks for your feedback! Are you symptom free now?
At what point did you start seeing improvement on the Rifampin? My headaches have had immediate improvement, which confirms to me that they are from Bart, which was my suspicion all along.
New symptoms though are appearing along with symptoms that got better and now are back with a vengeance.
I am also taking thyroid meds and my doctor will do bloodwork once I am on the full dose to see how he needs to adjust them. The rifampin is messing with my PPI though and I am going to have to increase that.
Posts: 187 | From Connecticut | Registered: Jun 2013
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posted
I was improving right along but it was slow improvement. It took about four to five months on the 1200 mg to finally have some symptom free days. I am having some issues right now because of my adrenals and my thyroid. Plus I am still treating Protozoa with Ivermectin, and will be until next Sept.
It's hard to say what is what. The dust settles two weeks after I'm off Rifampin, that's when my adrenals will normalize and my thyroid will be functioning better because my adrenals won't be a mess.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Thanks for sharing, RC. Please keep me posted on your progress. Rifampin is my last hope for getting well, so its very encouraging to me that you have improved on it.
I think I have had Bartonella since I was a teenager so I guess I need to be realistic that improvement may take some time.
Posts: 187 | From Connecticut | Registered: Jun 2013
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posted
I have been on Rifampin for about a month. Last two nights I have been suffering from itching all over (random). Notice it in the day as well when I think about it. No skin problems otherwise. Notice more aches in pains too (I am on Docy and Rifampin now).
Posts: 19 | From Maryland | Registered: Sep 2014
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posted
I am glad I am not the only one to have increased pain on Rifampin. Thanks for sharing!
Posts: 187 | From Connecticut | Registered: Jun 2013
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