Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

Rifampicin (Rifampin) Herx or adverse reaction.

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by justy, Sep 22, 2014.

  1. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,290
    Likes:
    12,034
    U.K
    How can we really tell if it is an adverse drug reaction or a herx?

    I started this antibiotic to treat Bartonella. I also have chlamydia pneumonia chronic and possible Lyme.

    My reaction was that within an hour of taking 300mg I felt extremely confused, agitated, weepy and slightly short of breath with facial flushing and heat. The confusion and feelings of paranoia, alongside a type of dizziness wore off as the drug left my system over the course of the day - approx. 8-10 hours later I felt almost back to my normal.

    Next day same thing, but added to this was an upper left sharp stabbing pain. The third day I was too afraid to take it, but aware that I am supposed to push through a herx I took a lower dose - despite the dose being lower the effect was exactly the same, and also wore off.

    So I stopped it after this and felt fine - in fact I then had two really good days and I haven't had a single good day in many months.

    The internet is awash with peoples experiences of taking Rif for Bart - and many people talk about horrific herxes, or side effects. But how can we tell which it is.

    I went to see my regular GP and she suggested I stop - she wasn't sure if it was an adverse reaction, but felt certain that I should stop when I told her that I had been feeling so much more ill than normal for so many months now that the effects of the drug where pushing me over the edge emotionally and psychologically and that I was having some suicidal ideation (now I am back off it that seems weird).

    Today I saw the respiratory nurse at my local hospital - she was shocked that I had been given Rifampicin - she said it was a hard drug and not given much.

    I am concerned tjhat perhaps what people think of as herxes are just adverse reactions. I have spent a lot of money on testing and travelling to see an M.E specialist and so much want to follow their plan and get better, but I feel like I have failed at the first hurdle. I am not feeling brave at all. I don't want and cant risk making myself worse right now.

    What experiences/knowledge do others on here have with this drug or with herxing and bacterial infections?
     
    JAH and golden like this.
  2. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,340
    Likes:
    21,487
    Albuquerque
    @justy
    I'll comment more later, but quickly, the respiratory nurse would be familiar with Rifampin's use in TB. It used to be a standard remedy for TB but has been replaced by other drugs since. So she is right that it is not often prescribed in her specialty but she would not be familiar with its common use to treat chronic Bartonella.

    Sushi
     
    justy and Valentijn like this.
  3. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    @justy - A Lyme herx is a very specific reaction. Facial flushing, fever (which might be below the normal average, but high for you), anxiety, and dizziness (hypotension) are part of a herxheimer reaction. But confusion, agitation, paranoia, etc, aren't.

    Breathlessness and dysphoria (emotional distress) are a known adverse reaction to Rifampin for some patients, and that can cause the suicidal ideation. So it sounds like the antibiotic is working and producing a normal herxheimer reaction as spirochetes die off, but also directly causing intolerable adverse effects.

    So it's a good sign that you have some Lyme going on, but that you probably need to switch to a different antibiotic to treat that and/or the Bartonella.
     
    Last edited: Sep 22, 2014
    Ninan, justy and Alea Ishikawa like this.
  4. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,328
    Likes:
    4,049
    N. California
    Hi Justy. So sorry to hear that you're having this awful reaction. It sounds frightening.

    I don't have any experience with that drug. But when in the past I have had an adverse effect as severe as you are describing and chose to push through it because someone else said it was "good" for me, I ended up sicker than hell and crashed in the gutter... And on top of that in each case it turned out that I had no one to turn to for help, because the prescriber had "never seen that kind of reaction before" and didn't know what to do to help me.

    Perhaps having an extended discussion with your prescribing doctor about all the adverse effects you're having would be helpful. Though ultimately, your body knows better than anyone outside of it what is right for you. I would trust your instincts and proceed from there.

    Good luck with it!
     
    Little Bluestem, golden and justy like this.
  5. Ema

    Ema Senior Member

    Messages:
    4,276
    Likes:
    5,996
    Midwest USA
    Rifampin can be very hard on those with compromised adrenal function as it speeds the metabolism of cortisol. This is fine for those with healthy adrenal function but may push those with impaired function over the edge.
     
    Hanna, justy, Blue and 1 other person like this.
  6. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,416
    Likes:
    24,337
    USA
    @justy I am so sorry this happened to you and my gut instinct is for you to switch to a new antibiotic if there is an alternate choice for Bartonella.

    Your reaction was severe and very frightening and if your body cannot tolerate this med, it in no way means that you failed. I have had endless meds that I could not tolerate and in many cases, there is an alternative.

    I had a severe reaction to the methylation supplements last month when I took a dose that was too high for me. I got very agitated and knocked things over and threw things and my HR was up to the 150's and I was talking crazy telling my husband he should leave me. I felt suicidal and the entire experience took about three days to recover.

    So, I would contact the prescribing doctor (KDM?) and discuss alternatives. Whatever it was due to, we may never know but it sounds intolerable.

    Be safe, Justy, and you did not fail anything.
     
    Little Bluestem, justy and Valentijn like this.
  7. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,178
    Ventura, CA
    Not necessarily drug side effects, I got those same symptoms from herxes using even alternative treatment, bartonella infection is also known to cause disorientation and mood changes. Of course it could be a side effect of the drug as well, but I can definitely say I had similar happen regardless if I was taking collodial silver, herbs, doxy, ceftin, etc.. Now I get far less herxes though and never as severe. The thing about treating these infections is you won't really have the best idea what symptoms come from what. Symptoms change constantly and old things go, or new things come out of nowhere. I guess this is where timing comes in and seeing changes but also making sure that treatment is relatively safe and known side effects are minimal.
     
    Last edited: Sep 22, 2014
    golden, Blue and justy like this.
  8. maryb

    maryb iherb code TAK122

    Messages:
    3,511
    Likes:
    3,096
    UK
    @justy
    I think you should phone the clinic, say its urgent, tell them your symptoms and ask for KdMs opinion. As others said you probably need to change antibiotics, shame as I suspect the good day was as a result of the R, but your reactions certainly don't sound bearable.
    Of course your GP will say stop it, but of course they won't help with anything aiming at the root cause.
    Good luck, hope you find something you can tolerate, its hard.
     
    justy likes this.
  9. Hanna

    Hanna Senior Member

    Messages:
    715
    Likes:
    839
    Jerusalem, Israel
    Sure the best thing is to talk with KDM. With ABX for Lyme & Co, it is often so hard to make the right decision : between pursuing treatment with a med that causes you harsh Herx (but keeping it bearable though) or stopping it right away because the reaction is due to intolerance.

    This summer I had to deal often with this question. My doc wasn't available most of the time and it was a hellish time. One "should" have some feeling as Dreambirdie says, but it often gets in competition with our will to apply all the treatment to the letter in order to maximise our chance for getting better (especially if treatment was prescribed by one of our specialist docs)... and then there is a risk of overdoing/ not beeing enough aware of the situation we are dealing with.

    What you are describing @justy seems to be in the "not bearable" range and be better safe than sorry... untill you get an answer from your doc.
     
    Gingergrrl and justy like this.
  10. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,290
    Likes:
    12,034
    U.K
    yes, I think i'll phone the clinic tomorrow - my few great days have sdaly come to an end and now im feeling worse then ever - I now have a new symptom of really strong joint pain and the burning sensation on my arm is there all the time. The joint pain is weird as it pings all over my body, from one area to another really quickly.

    I'm fairly certain my M.E doc will say it's just a herx and to carry on, but my inner voice tells me it is not a good drug for me to take.
     
    AndyPandy, Gingergrrl and Dreambirdie like this.
  11. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,326
    Likes:
    4,394
    London
    Hi Justy,

    If you ring the clinic they may have some ideas. Could this be IRIS instead of the "usual" herx?

    I remember when I was taking IVIG my doctor suggested Benedryl to dampen down the reactions. This also came up as a possibility to take when I was on MAF314.

    There was a KDM patient a while back who said that they suggested a supplement to cut histamine (I have forgotten the name but it was something like DAO).

    Hope that they can help you better.
     
    Last edited: Sep 23, 2014
    Gingergrrl and justy like this.
  12. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,328
    Likes:
    4,049
    N. California
    The inner voice is the master. All the other voices are just opinions. If I felt as miserable as you're describing, I would ditch the drug for another option. It's not like it would kill you to stop it, right?

    The whole concept of "the herxing healing crisis" has begun to sound like a ploy to convince patients to push through horrible reactions for the pie in the sky of the healing at the end. It rarely seems to work like that though. All the alleged healing crises I have had in the past turned out be crises and crashes and not healings. I am very wary of that concept at this point.
     
    Hanna, barbc56, Valentijn and 7 others like this.
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,416
    Likes:
    24,337
    USA
    @justy I am glad you are going to call the clinic and let us know how it goes. I think the consensus is that your reaction was in the unbearable category (whatever it was due to) and you should inquire about alternatives. If you were allergic to the med, he would find an alternative and this is pretty similar!
     
    Hanna and justy like this.
  14. PNR2008

    PNR2008 Senior Member

    Messages:
    610
    Likes:
    1,225
    OH USA
    @justy The longer I've experienced this illness the less I will tolerate pain. Yes I will stand as long as I can during a TTT but taking something internally that is hurting you is unacceptable in my eyes. I know you're a warrior, most of us are, and you want to get better but so much is not known about the disease and the drugs to treat them.

    Once many years ago Jesse Stoff MD gave me beta interferon and it exacterbated every intolerable symptom I had. It made my body feel horrible but got to my brain by paranoia and anger. He heard about it, after all the doctors are learning too.

    Take care.
     
    barbc56, justy and Gingergrrl like this.
  15. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,340
    Likes:
    21,487
    Albuquerque
    My experience with Rifampin: I had intolerable side-effects when the dose was too high for me. They were much the same as justy's but without out the mental aspects. When I cut the dose way down and very gradually titrated up, I was able to manage and now have no noticeable side-effects from it at 600 mg daily. But, it took 6 weeks to 2 months to titrate up.

    The thing that surprised me was that I got exactly the same side-effects when I started Samento later. This made me think that both were kicking up Bartonella symptoms rather than me being allergic to Rifampin--as Rifampin and Samento are very different in composition.

    But, I'm glad @justy is going to contact her doctor because he has a lot of experience with this med and would be able to evaluate the side-effects and advise her of the best way to proceed.

    Sushi
     
    Hanna, justy, ukxmrv and 1 other person like this.
  16. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,416
    Likes:
    24,337
    USA
    @Sushi you are very wise re: the tapering aspect and that is a possibility too. My Dr wanted me in the span of three days w/Midodrine to do 2.5, then 5, and then 10 mg each 2x/day.

    I told him that with all due respect, my body cannot tolerate such a fast increase and the med will fail. So instead I am staying at the 2.5 for at least two weeks to see how I tolerate it.

    Maybe Justy could try super low dose of antibiotic and titrate up (with Dr approval of course) and then if reaction the same, you know you tried everything and the med is intolerable.
     
    Hanna, justy and Sushi like this.
  17. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,340
    Likes:
    21,487
    Albuquerque
    Sorry, @justy, off topic here (mea culpa! :rolleyes:)

    Forget, Gingergrrl, Midodrine is a tablet not a capsule? Could you also try titrating up by cutting it and raising the dose more slowly? With your doc's permission of course!

    Sushi
     
  18. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,416
    Likes:
    24,337
    USA
    @Sushi, I don't think you went off topic and were just presenting another option. I had never thought about titrating an antibiotic and viewed it more as an all or nothing kind of thing. But maybe for Justy, it could be an option to break open the capsule and try titrating it.

    And you are right re: Midodrine, it is a tablet that I can cut if needed (you are brilliant again LOL!) which would allow me to do an even slower taper. So far I am tolerating the 2.5 dose and it is actually helping. I was using it as an example of titrating but now I am getting off topic so will re-direct this thread back to Justy.
     
  19. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,178
    Ventura, CA
    Just a thought but I recently introduced Nutri Silver into my regime, have been having amazing days past week. Today a worked out hard doing weights and swimming for the first time since I got sick. I was strong as an ox too and feel great. Just not to long ago I felt so bad I literally thought I was slipping into a coma. I did some other stuff with methylation and added a fruit and veggie concentrated complex as well, some of it all might be co incidence but I have been treating a bit of time now. It at least shows something is working and the silver is the only major change I made, maybe try discussing the option with your doctor?
     
    Hanna and justy like this.
  20. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,290
    Likes:
    12,034
    U.K
    Just to let you all know that I couldn't get through to the clinic by phone so sent an e mail marked urgent treatment question and they replied within 3 hours! I'm pretty impressed.

    My doctor said to definitely not take any more Rifampicin and to start 500mg clarithromycin 1 x daily and then after to weeks add 200mg 1 x daily Doxycycline.

    I hope this will be a better combo - and perhaps with a few weeks off of all drugs I will fieel a bit stronger and ready to go again.
     

See more popular forum discussions.

Share This Page