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Experience with Xifaxin not working after 3 months?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by anncavan, Dec 1, 2011.

  1. anncavan

    anncavan

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    I had a huge spike in energy and stamina upon starting Xifaxin. I remember when initially starting the drug that I saw mention online of its improvements usually fading after 3 months or so. I'm sad to report this has also happened to me.

    Does anyone have experience with this? Would increasing the dose help? Starting back up in a few months? Maybe a common follow-up drug to try? Any ideas??
  2. esther

    esther

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    Sustained improvement on maintenance xifaxan!

    Hi everyone,

    I'm writing to report on my wonderful improvement from Xifaxin! I was given it about four months ago by my gastro as a last ditch effort to address gastro symptoms after he was unable to definitively diagnose me. He said he'd like me to try it and there was a fifty percent chance it would do nothing and a fifty percent chance it would miraculously cure my gastro symptoms. He was willing to try it because there were no side effects he was worried about with this drug.

    Within a couple of days, my ME/CFS symptoms went away. But once I went off of it, they returned. We tried a short course a couple of more times and the same thing happened. After looking up its use as a maintenance drug and finding it was being used as such for another condition, I asked with some trepidation about the answer to be put on it continually. He agreed as did by ME/CFS doctor! My insurance is paying for it but I still have some apprehension they could challenge it when I renew for another 90 days. I have two doctors to go to bat for me though but I hope that won't even be necessary.

    My improvements have been both physically and cognitively. I have no flu-like aching, no total exhaustion requiring bed rest, an amazing improvement in my energy and an improvement in my cognitive abilities. My husband and I have been amazed! However, my ME/CFS doctor cautioned me to not get too excited which I was for awhile and to not push too hard because people relapse. He also asked me to email him once a week updating him on my condition. I can't help but wonder if the people who improved on xifaxan and then got worse were on short courses of the drug which are most commonly given, not on a maintenance dose. The short course dose is 650 mg 3X a day for a week or ten days. The maintenance dose I'm on is the same strength but only 2X day. I'd love to hear of others' experiences in regard to xifaxan. Is there anyone else out there on a maintenance dose?

    I was eventually diagnosed with gastroparesis which impairs food being sent properly and quickly from the stomach to the small intestines and below, causing an overgrowth of bacteria in the upper intestines and stomach as food rots in the stomach and small intestine. This overgrowth of bacteria sends toxins to the brain causing, apparently, a lot of the cognitive symptoms which have now been relieved. It is important to note that gastroparesis is often associated with nerve damage caused by diabetes but is also caused by other things as well. (You might want to google it to see if your gastro symptoms match up to those caused by gastroparesis as a first step.)

    Now I can get tired but it doesn't make me feel sick. I've had to relearn what normal fatigue feels like and I've had to learn a whole new way of pacing myself accordingly. I was 39 when I first got ME/CFS and am now almost 65, completely deconditioned and obese. I've begun to do Sit and Be Fit exercise for seniors using slow and gentle movements to tone and stretch. My new found ability to shop and do things around the house as well as going out with my husband for fun is my aerobic exercise. Now that I can recognize normal fatigue, I rest when I feel the need to and take it easy if I haven't slept well. But even on these days, I can putter around the house, work on the computer and take care of calls etc. I do find that when I haven't slept well and feel sleepy, my mind is tired too and there is a drop in cognitive skills. I'm working on my cognitive skills when I'm feeling well and was pleased to discover that I could remember things like numbers so my short term memory is better!

    Basically, I don't feel sick even when tired but I'm not pushing my luck and continue being prudent about my activities. I don't know if this will last, but I'll take what I can get! It would be very hard to go back to being so sick as I'm sure you all understand.

    I hope that my experience and xifaxan will benefit many more people with ME/CFS! We need to keep up our hope which by itself makes us feel better! All the best, Esther
    anncavan likes this.
  3. anncavan

    anncavan

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    Oh my gosh esther! What a great update. For some reason I missed it until now. So how long have you been on Xifaxan at that "maintenance" dose? It was after 3 months that it stopped making some of the fatigue go away for me, but I still had to continue taking it to manage the gut issues. I hope your ME/CFS symptoms stay away!

    I ended up learning that I was postive for enteroviruses a few months back. They were most likely causing the gut stuff. I was negative for coxsackie B, but was positive for echovirus 6 & 7. Montoya (this was my first time seeing him) suggested I try Dr. Chia's Oxymatrine protocol to manage them. I started at 1/6 the dose and worked my way up. After only one week of the 1/6 dose I was able to stop Xifaxan competely. And now after 2 months I've been able to go for brisk walks. I haven't been able to do that in years! My fatigue is by no means gone. But to have the stamina to go for a walk (still needing rests in the middle)... after 4.5 years of being stuck home. It's amazing. I'm sticking with the Oxymatrine for a minimum of 6 months, to see how it goes.

    Thanks again for sharing your experience Esther!

    ann
  4. globalpilot

    globalpilot Senior Member

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    HI Ann,
    I also have enterovirus and am taking oxymatrine. You mention taking 1/6 of the dose. How many mg's are you taking ? What gut symptoms has the oxymatrine releived for you ?

    GP
  5. anncavan

    anncavan

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    Hi GP. I worked my way up to the full dose now. I think it's 600 mgs now? that sound right? it's 6 tablets per day.

    My gut stuff was weird. It only started last summer. I was nauseaus to the point of not being able to eat at all. Lost a ton of weight in a very short period of time. I'd never actually "get sick" but felt like I was about to at all times. After a long while, I finally could eat campbells chicken and rice soup, baked lays potato chips and coke classic. The second I was put on Xifaxan I was fine. If I'd try to go off Xifaxan the first thing I'd notice was that fruits and vegetables went straight through me. Then the nausea would come back. And then only response was to go back on it.

    But like I mentioned, I accidentally forgot to put Xifaxan in my pill boxes for the week. Once I realized it a week had passed and I had been fine. It was amazing!

    How is the Oxymatrine going for you?
  6. globalpilot

    globalpilot Senior Member

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    Hi Ann,

    Wow, what a relief.
    I'm not noticing anything dramatic from teh oxymatrine yet. I do notice less gas overall and the bloating does seem to be lower. I think I've been on the oxymatrine @600mg for a month but I have had to take a few breaks due to some other procedures. I'll get another biopsy done in late summer maybe and see if the enterovirus is gone or at least greatly reduced. I had a lot of infected cells, it looked like about 60% to me.

    GP




  7. Athene

    Athene Never give up

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    Are you taking it continuously or in bursts? It really works best if you have it in intesnse bursts, every 4 or 5 months.

    Xifaxan works by killing that harmful bacteria including the H2S producing ones, but it does also kill most friendlies as well.
    The main nasty that it does NOT kill is clostridium difficile. The only way to keep that one under control is probiotics throughout the time you are takin xifaxan (at least 2 hours apart from the antibiotic doses). If you don't have enough of these, you are culturing clostridium and risking pseudomembranous colitis (which I have had and believe me, you will NEVER forget it if you survive that!)

    Xifaxan will NOT work, or certainly not in a sustainable way, if you are not taking enough probiotics. You need at least 45 billion a day, taken with prebiotic foods like fruit or raw veg or psyllium husk. You need these to allow the probiotic bacteria to establish live colonies in your intestine. Otherwise, you keep taking xifaxan, it kills everything, and although you have a lower level of all bacteria, you still have the wrong balance in there. Many people take one probiotic and do not know they are getting a dead product, there is really no way to be sure. So it is best to mix and match and keep buying an assortment of different brands and types. Take a mix of them.

    Sorry if you think I am being patronising going on and on about probiotics, but I have met so many peoploe who think they are OK of the probiotic front and they just don't have enough of them.

    Finally, Xifaxan is one of the "nutrient burglar" antibiotics, so you do need to take a good multi vitamin while on it or you'll get deficiencies. You certainly won't be able to get enough nutrients from your diet to compensate for what it steals.
  8. Hanna

    Hanna Senior Member

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    Simply wonderfull Esther!!!
  9. clive powney

    clive powney Senior Member

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    Ann + Global Pilot,
    Hope you don't mind me hijacking your posts, but I have just started oxymatrine (equilibrant) and was wondering if you want to share expoeriences. I have just moved up to 2 tablets twice a day. Can't say if I have had anything happen as yet as I have been up and down as usual (more down than up).I have noticed a rise in my blood pressure , as i am on high blod pressure neds already I need to watch my step, although 140/90 is where I am and this is the limit for normality. Dr Chia recommends 2 tablets 2 or 3 times per day , not sure yet if I'l move up to 6 a day as it is quite expensive - can we keep in touch ?

    clive
  10. globalpilot

    globalpilot Senior Member

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    Yes of course. There is an old thread called 'oxymatrine journeys' I think that we could use or start a new list.
    Do you think the blood pressure rise is due to the oxymatrine ?


  11. clive powney

    clive powney Senior Member

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    I reckon it is - i have had high blood pressure for years and it has been under control un til the last week or so.
    I also seem to get the runs every week or so since starting the tablets which lasts a day and then goes - it comes with a nauseous feeling but no real stomach ache.
    my main ME symptoms are
    balance issues
    inability to exercise
    fatigue
    sore throat
    brain fog
    inability to cope with any stress and easily emotionally upset
    myalgia in calf and thigh muscles
    mild headaches
    sleep disturbance with night sweats

    I have now been on the tablets for about six weeks, moving from 1/2 a tablet the first week and now to 4 tablets a day,
    I had an episode of 4 or 5 quite reasonable days on the trot about 2 weeks ago (which is unheard of) and I thought, this is it, but then things went back to square one again.
    How have you been doing - are you on oxymatrine or equilibrant - are you a patient of Dr Chia? I have obtained these tablets off my own back as there are no tests in the UK for chronic enterovirus infections - reason I have done this is my GP has commented from the start of my illness that coxsakie B virus was involved somewhere and he has maintained that view for the last 9 years

    Clive
  12. globalpilot

    globalpilot Senior Member

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    I take between 600mg to 900mg oxymatrine a day. I buy st8 oxymatrine and not equilabrant due to the cost. My bloating/gas are less but still very much there. How interesting you had a good trot for a while. I hope it happens again soon.

  13. CBS

    CBS Senior Member

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    This wasn't addressed to me (my apologies if this is an unwelcome comment) but oxymatrine contains licorice and may cause a rise in BP.
  14. clive powney

    clive powney Senior Member

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    thanks for that - i need to keep my eye on it - any ideas of how to counteract?
  15. SaraM

    SaraM Senior Member

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    I am taking one oxymatrine/ day now and I am noticing a rise in my body temperature. I never feel such an effect from the licorice tea I make with licorice powder.

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