I added rifampin one week ago today after being on doryx for two weeks prior.
From the second day on rifampin I've been feeling lousy. Dizzy,poor concentration, terrible memory, really tired but can't sleep at night and my eyes are killing me.
Before last week, I could run/jog 4-5 miles but now I can barely get out of bed.
I'm on 150mg of rifampin 2x a day and 100 mg of doryx 2x a day and I also use a rife machine but will skip it this week.
I have lyme, ehrlicia and mycoplasm so I'm not sur why my LLMD prescribed rifampin although there was one post showing a study that it was good for ehrlicia.
What do you guys think herx or reaction?
All My Best, Scott
-------------------- BTW - I am NOT a medical professional - just speaking from MY own personal experience. Posts: 266 | From Philadelphia | Registered: May 2005
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posted
Hi Scott, I am on rifampin also and it make me feel pretty crummy. I am not sure if it is side effects or herx either. I did notice my symptoms improved after a few weeks.
Best of luck, Kristen
Posts: 24 | From Oxford, NC | Registered: Oct 2005
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posted
sounds like a herx, but I'm only going by my own reaction to it. It really works on the brain.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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liz28
Unregistered
posted
I was sure I had bartonella when I started rifampin, and don't know whether that's what you have.
I've had two six-week herxes on rifampin, and both times, the herx went through a predictable series of stages. First, there was extreme exhaustion, crabbiness, sore muscles, headache.
Even though there is some question about whether you can do this (so please do research!) I added in CoQ10 to keep enough energy to function, and took Theraflu Non-Drowsy to temporarily get rid of the flu symptoms.
For sleep, I take lots of calcium/magnesium/zinc supplements, 6mg melatonin, valerian, and 10mg ambien broken up into two doses, for when I first go to sleep and when I wake up once in the middle of the night.
Two to three weeks in, I got a constant lowgrade fever and extreme anger over nearly everything. My shins were sore, and my neck and throat hurt constantly. This lasted a long time, and stirs up a lot of anxiety, since the anger seems to come out of nowhere. I just kept telling myself, this is a neurological illness, I'm lucky to be getting rid of it.
After 4-6 weeks, each herx ended. My second one is ending now, and I went back to the running schedule you described--I also run about 4 miles every other day. But not with active Lyme! That's impressive that you can do that.
Another supplement which helped enough for me to have to tell you about it, but which is fringey and should be researched before trying it, is vinpocetine. After my first rifampin herx in August, I was at about 95% remission after being disabled five years with Lyme, babesia and bartonella. Research into the supplement fringe had turned up vinpocetine as a relatively safe derivative of periwinkle, which increases the flow of oxygen to the brain and boosts its ability to use glucose. I figured, it's $11 a bottle, what the hey. It did work, and flushed out every hidden bug in there, causing a massive relapse, especially of bartonella. So I had to go through the whole stupid rifampin herx again, but was gratified to see that the symptoms and stages of recovery were exactly the same the second time around, suggesting there is a pattern.
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WildCondor
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posted
Its the Rifampin. Do not assume it is a herx. I made that mistake and I was wrong. I was having a bad side effect to the drug itself. i was dizzy and exhausted and had bizarre moving sensations in my brain. Tell your LLMD you are experiencing this, you will probably stop taking it. It made me that sick too.
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Sorry you're going through that! It's awful I can relate, even though if you decide to stick with it, it may dissipate (I had the same thing at first).
I think the symptoms of exhaustion, can't sleep, can't remember, are almost definately a Side Effect because Rifampin leads to increased metabolism of all hormones including thyroid hormone. Since thyroid hormone is directly linked to stimulating cell's metabolism it would be a "shock" to all the cells of your body for it to be suddenly reduced.
There *may* be some herx components, for example I had a really bad headache a few days after starting Rifampin that seemed unconnected with the other symptoms and could have been a herx.
Anyhow good wishes in getting through it! I also took the amino acid tyrosine (which is a precursor to thyroid hormone, iodine (in salt) is also a precursor) ... but I'm not if that really helped or if my body just adjusted over time of probably about 2 weeks.
Hope Things Improve,
John
P.S. I didn't realize you didn't have bartonella. Imo, it may be quite possible to treat all your infections without ever touching rifampin. Like WildCondor said it's a good idea to call your Dr.
-------------------- "...reading the Meditations for long periods can be conducive of melancholy." --qtd. in intro to Meditations Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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liz28
Unregistered
posted
I'm not sure I agree with the above assessments, and want to repeat one point, as rifampin is the antibiotic that has put me into remission (I've decided to start training for a local marathon next year).
Of course you should stop taking the drug if you are having an allergic or dangerous reaction to it. But again, I've gone through two (2) six-week cycles of the effects you described. In both cases, the exhaustion stage was followed by a definite herx, when I had fever, brain fog, mood swings, and fatigue. Then those wore off, and at six weeks I was exercising again.
In between these two six-week herxes, I was still on the full dose of rifampin, but had NO side effects, except that I was in remission. And the second relapse was a direct result of a fringey supplement I tried. This second relapse followed the exact same series of stages, from exhaustion to fever to recovery, and involved both Lyme and bartonella symptoms.
The reason I'm bothering to bug you with this is that rifampin is one of two or three antibiotics that has had great success combating bartonella. While safety is paramount in Lyme recovery (we hope), I also wouldn't write off a potentially lifesaving drug until you were sure it was the right thing to do. I actually tried levaquin, and for me it didn't work. For people with this problem, it's lucky that rifampin exists.
Although as a disclaimer, I should also say there are lifesaving drugs I can't take because of their side effects, like minocycline and levaquin. But I gave them both several weeks.
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Thanks so much for the responses.I really do appreciate it! Here is an update.
I stopped everything on the day I posted this, Wed. Thursday I felt a little better. Friday I felt even better than Thursday and did my rife session. Today is Saturday and I had a really good day.
To be honest, I don't know what it was that made me feel so crappy but I do feel like my head has cleared out more than before I started the rifampin. So, I'm going start doryx again and then add in rifampin to see what happens again. I'll post it here.
It was pretty scary having them mind things going on but if I come out of it again with even more improvement then I will be thrilled.One test will be church tomorrow. If the sun and lights don't kill my eyes like they always do then I definitely made improvements.
Thanks Again and All My Best, Scott
-------------------- BTW - I am NOT a medical professional - just speaking from MY own personal experience. Posts: 266 | From Philadelphia | Registered: May 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Hang in there Scott. I am on Rifampin as well. It tears my gut up at times. I don't like the herxing either and there are times I really question whether its a herx or a reaction to the med. I try to stay in touch with my dr when all that happens.
nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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suki444
Unregistered
posted
It is not always a herx with Rifampin if you go downhill unfortunately.
My LLMD said people go one of two ways on it - it doesn't work for everyone. I started going downhill on it even after a few doses.
posted
I am currently on Rifampin and you described my symptoms almost exactly. For the first couple of weeks I symptoms that included a migraine type headache, dizziness, loopiness, feeling like I couldn't think things through, chills, irritability , fatigue, overly emotional, raspy sore throat, being feverish and having intense random sweating. I have been on it for a while now and the symptoms have died down but have not gone away. I missed several days of school because everytime I would try to complete an assignment, in particular things that took a lot of intense thinking, I would exhaust myself to the point that I stood up quickly one time and almost fainted. I wish you well and I hope that it turns out well for you and everyone else out there! Rachel
Posts: 2 | Registered: Aug 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
quote:Originally posted by secondtimearound: Hi All,
Thanks so much for the responses.I really do appreciate it! Here is an update.
To be honest, I don't know what it was that made me feel so crappy but I do feel like my head has cleared out more than before I started the rifampin. So, I'm going start doryx again and then add in rifampin to see what happens again. I'll post it here.
Thanks Again and All My Best, Scott
Hi Scott,
Please be sure to speak with your doctor. I have heard that rifampin is not easily stopped and restarted. That is, if you stop rifampin, I have heard that many folks cannot tolerate the same dose and need to start at a lower dose. This is one reason I have not taken rifampin yet...
Posts: 2557 | From home | Registered: Aug 2006
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
My son did three years of abx with two llmds and there was little improvement/response. Since March he has been doing a rifampin/doxy/zith protocol and finally there is a difference. He is taking 4 college courses for the first time in three years!
He even wants to do a two week Ireland course with the university over winter break. This kind of freaks me because I immediately went to read about Bb in Europe and then went to see the places/parks/isles.... he would be visiting. I would first have to treat all his clothing for ease of mind.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
We are getting ready to try this on my son, also. I sure hope it works.
Amazing how a situation or question comes up in my life and then BAMM.... a corresponding thread will pop up here on page one(seemingly at random).
Oddest thing.
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
For him, it wasn't until the fourth month that he had some real progress. For the past two months he has been having night fevers, but his 7 year headache has improved for the first time. The symptom that is still present is muscle pain.....the fatigue/stamina has improved.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
The higher the bacteria load, the stronger the herx. Rifampin made me herx strongly, but it's also done wonders for me. It's hard to differentiate between a herx and getting worse sometimes, but in the early stages of my treatment, I had herxes that lasted for Months. It was hard to know at the time if I was getting better or worse, but now that I'm much better, I can tell the difference.
What I'm saying is that this (feeling worse) may just be something you're going to have to go through before you feel better.
Good luck.
Posts: 975 | From California | Registered: Apr 2007
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