I am just looking for encouragement. How long do herxs on rifampin last? And how do you start feeling better?
I get a 2 day of feeling better and then I crash again. Right now my bad days on rifampin, used to be my good days a 2 weeks ago. Is this how improvement happens for others? Ever so slowly? In the mornings and evenings I am so............ cold it hurts. Then I fall asleep and wake up soaked with sweat.
And I am so............ tired all the time, like I cannot get enough sleep. Every joint hurts, legs are weak. Oh, how long does this go on. Or when is it time to get off the rifampin??
lymeinhell
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Member # 4622
posted
I herxed every 28 days like clockwork. With my LLMD's permission, I would stop the Rifampin for 48 hours (and up my milk thistle big time) and at the end of 48 hrs, I could face the world again.
It took a couple months of major herxing to finally see a teeny improvement, and would notice that I actually felt just a little better AFTER the herx than I had prior to.
It's significant that you are seeing a 2 day period of feeling better. So hang on to those good days when they come, and DON'T fall into the mental trap of 'OMG, I feel crappy today. I'm relapsing.' It's too easy to do, and much too early for the ups and downs to have significance.
Hang in there - if this is your first time on it, it should get better. In the meantime, listen to your body - herxing to the point of incapacitation isn't good for anyone. Detox, detox, detox.
Hope you feel better.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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lyme in Putnam
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Just started at baby dose last week, couldn't tolerate full dose last year at all. Neck still cracking since I started. Last night first time flu like, toes, ahe, joint pain, since samento, but I so depersonlized on the inside, nothing on the outside. I stayed under blanket last night, no chills, just couldn't move head, body aches. Only on 150 but I didn't think it could do snything at that dose. Added samento Monday.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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lymeinhell
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Hang in there LIP.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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WPinVA
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I'm having a hard time starting it too. Really sleepy and tired all the time.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Feeling better for two days is very significant. Bartonella flares about every 5-7 days depending on the strain.
Rifampin herxes are from hell, I'm sure of it, but it changed my life! I was very ill with bartonella being a major role. I was 95% bedbound, otherwise in a wheelchair, and on supplemental oxygen. After nine months on Rifampin (six of those also on Zithro, one on Doxy), I'm not even as much as housebound, I'm out of the wheelchair, and I was able to give back the oxygen concentrator.
My bart flares are not gone ENTIRELY yet, but are very mild in comparison to what they used to be. I was on 600mg for two of those months when I saw the most improvement. I'm on half that dosage now, still improving but at a slower pace. The herxing can be viscious, though, so tread carefully.
Hope this helps and good luck with your bartonella fight! Once you knock it down, be prepared that other infections may come to the surface (read as: probably) and you will know what to attack next, be it Lyme or otherwise.
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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nonna05
Frequent Contributor (1K+ posts)
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posted
Did great 3 years ago, for two years ,off and on.. That was the problem ...Dr.'s did off and on treatment, and did 300mg ,when I did good on 150 mg,,.. Said was allergic,,,,knew wasn't. Found the 150's with Benadryl in hand tried again and it was fine..
So I could have done 3 x's 150 but that all went over their heads, . . But you can't do short dosage and restart soon...have to wait. It just stops working
Also if gut gets a bit icky,,, take with a dab of applesauce or babyfood. Bannana is great. Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Rifampin did absolutely nothing for me...except elevate my liver enzymes!
But...I have heard that it helps some folks with bart.
Good luck!
~tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I have Cpn (chlamydia pneumonia). I am on Rifampin 300 mg bid and doxy 100 mg bid. My IgA antibody titers have dropped from as high as the lab measures >= 1:256 to 1:32 in 6 months, which is impressive. And I have felt better.
Now in the middle of the last 6 months (July 9th to be exact) I had a major falling apart with bad symptoms accompanied by a low WBC. We believe that that falling apart was caused by a virus reactivating. We *think* it may have been HSV 1 as one lab detected a positive IgM for that pathogen (and my IgG is as high as the lab measures). Or it may be a virus that we are not testing for.
All this is to say that rifampin has helped me. I noticed the improvement about 6 weeks into starting the drug. But, I also fell apart several months into taking it because I felt so good (for me) that I overdid it, and caused another pathogen to reactivate.
So, now I'm switching my antiviral med....
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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scorpiogirl
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posted
It's one of the harder drugs to tolerate. It made me bone tired! Every bone and muscles screamed w/ pain. My legs felt like they were concrete, stiff and heavy! And I got the worse headaches that won't quit while on that drug. It also elevated my liver enzymes as well. But it did help w/ inflammation in my brain.
I finally pulled the plug a few days ago. And so far the heaviness feeling is much better. So we'll see.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
It has been beating me down for two months. I had to take about a week off, felt a lot better, then the fevers and sweats came back.
Started back on it about 5 days ago, this time it isn't as severe. Still hurt from head to toe, and light activity helps a lot, working hard is quite uncomfortable tho.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
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posted
Just went upto 300, added doxy yesterday with samento. Only on rifampin 2 weeks. When do u see improvement if any.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Good to hear I am not the only one who needed a break from rifampin. And good to hear it is not as bad when starting back up again. I was going to ask my LLMD for something different for Bart. When I started the rifampin it took about 5-7 days for the herx to get real severe.
And my worst symptoms were joint pain, every joint and fatiuge from dealing with the pain. And the chills, so............. cold my bones hurt. My friends would look at me and cry. So I must have looked bad. Pale. Just now starting to feel alive again.
I am also on Omesif (sp?)and am still taking this.
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Nonna
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I was treated for Babs for 1 1/2 yrs. And I thought that was bad. Nothing like this.
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