New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Dr KDM rifaximin

Discussion in 'General ME/CFS Discussion' started by trickthefox, Aug 3, 2016.

  1. trickthefox

    trickthefox Senior Member

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    Hey guys

    Currently treating my lyme with stem cell therapy but still having lots of gut issues, which i suspect is from a dysbiosis, and probably from H2S bacteria seeing as I react to sulfur supplements so much! KDM wants me to do 2 whole months of rifaximin 550mg a day based on my stool results, this seems excessive, but perhaps not? Has someone else been on this dosage for this time frame? trying to understand the logic behind it, ive shot an email over but no reply yet.
     
  2. Thinktank

    Thinktank Senior Member

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    That's not really excessive, it's "only" 550mg / day.Treatment for SIBO usually requires 1500+ mg / day.
    I've been on a pulsed treatment with rifaximin 550mg daily and it has really helped with the inflammation in my gut. My stool now also looks much better.
    Rifaximin also supposedly helps restore a leaky gut and reverses antibiotic resistance to other abx.
    It's the only abx that has given me 0 side effects.
     
    justy likes this.
  3. msf

    msf Senior Member

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    Surely stem-cell therapy for Lyme is much more unorthodox than 550mg of Rifaximin for 2 months for gut dysbiosis?
     
    justy likes this.
  4. trickthefox

    trickthefox Senior Member

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    Just excessive based on the recommendations for rifaximin that i've seen which usually dont exceed 2 weeks for SIBO. Nice to hear think tank :) Glad you've got some progress!

    @msf Yep stem cells are pretty unorthadox, but I still like to know the safety of these things before I jump in head first, it took me a long time to decide to do it, but in person and face to face the only people I have met who have claimed to be 100% cured of lyme seem to have done stem cells, thats just from personal experience, ive met a few online who have got better through other modalities like antibiotics and rife, but in real life i've met 7 people now who recovered through stem cell treatment, pretty significant I think!

    Im just wary of antibiotics because of how already messed up my gut is, I react to absolutley everything, have histamene issues with mast cell, H2S bacteria, leaky gut, candida, the usual wankmuffins
     
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  5. msf

    msf Senior Member

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    Sure, but Rifaximin seems to be one of the most, if not the most, benign antibiotics available. I haven´t had any problems with two courses of it, and I have had gut problems with a few other antibiotics. I found one paper that stated that Rifaximin seems to modulate the microbiome rather than reduce its diversity.
     
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  6. Firefly_

    Firefly_ Senior Member

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    I just did 2.5 months of rifaximan at 550 mg 3x a day with no ill effects. Waiting on retest results now.
     
  7. Troyza

    Troyza

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    Ren, can I ask how you determined the H2S bacteria is an issue? Is that a stool test showing strep overgrowth?
     
  8. Groggy Doggy

    Groggy Doggy Guest

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    @trickthefox

    Stem cell treatments are good, it's just so costly in the US, because of FDA regulations. I am glad you are getting them:)

    GD :dog:
     
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  9. Dufresne

    Dufresne almost there...

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    Seven people? That's impressive. What kind of stem cell therapy?
     
  10. trickthefox

    trickthefox Senior Member

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    Yep my stool was 40% strep. However, the thing that throws me, is that my last stool test, the strep was in range, and the bacterioids were 40%, then i took clindamycin pulsed as reccomended by KDM, and it worked like expected but the strep then went up, but even with this change in my microbiome, my digestive symptoms are very much the same (brainfog and fatigue after most things i eat) so it makes me wander if it really is the issue. Hopefully this antibiotic approach isnt just like playing whackamole, and once you knock down once species another pathogenic one wont flourish
     
    Bob likes this.
  11. trickthefox

    trickthefox Senior Member

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    Autologous stem cells, harvested from my own fat, and fed back into my blood once they are primed and seperated, they are getting impressive results for lots of autoimmune issues, there is a school of thought that lyme is more an immune issue than a bacterial one, and that by correcting the immune defect, your immune system will do the rest
     
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  12. trickthefox

    trickthefox Senior Member

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    If people are interested in finding people themselves, the place I went was called 'infusio clinic' i would trawl the facebook groups, and online to find recovery stories then get in touch with them yourselves, but I also have been blogging about my experience on my facebook if you search for 'Lyme 101' on facebook. But its worth noting two weeks ago i went into anaphalactic shock, nearly died, and was pumped full of steroids (which are a big no with both lyme disease and can affect stem cell treatment), and have since spent a few days in emergency care, since then my progress has been very shaky, before that i was doing things i havnt done in a long long time like playing guitar for hours a day, and being able to read, hoping once i recover from the steroids ill be in a better place
     
  13. trickthefox

    trickthefox Senior Member

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    Did you see benefits? What is curious to me is that it seems that the majority of KDM patients seem to do the same kind of antibiotics at the same time? Like when I was taking clindamycin, many of the KDM patents I spoke to had been reccomended exactly the same, and now it seems many patients are on long term rifaximin, i wander if we are like personal guinnie pigs or if this is just coincidence
     
    perrier likes this.
  14. Gingergrrl

    Gingergrrl Senior Member

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    Am so sorry and do they know what caused the ANA? Was it from the stem cells itself or the antibiotic or just idiopathic? Were you given Decadron or a different kind of steroid? No worries if you do not know and glad you are okay!
     
    justy likes this.
  15. trickthefox

    trickthefox Senior Member

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    it was to a supportive IV i was having at the stem cell clinic, at the time I was given hydrocortisone which I know is one of the milder ones, then in the german hospital possibly presnidasone
     
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  16. Thinktank

    Thinktank Senior Member

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    Sorry to hear you had to go through that, wish you a speedy recovery.

    What do you mean by supportive IV? Just saline to hydrate? Or anything mixed with it to support the stemcell therapy?
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    Am curious, too, if you know what was in the IV @trickthefox? Am so glad you are okay and sounds very scary!
     
  18. Solstice

    Solstice Senior Member

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    We are to some extent guinea pigs yes. KDM keeps updating his protocols based on new stuff coming through and also based on reactions by his patients.
     
  19. msf

    msf Senior Member

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    Yes, just like any patient of an ILADS doctor is, due to the fact that we don´t know how to really effectively treat Chronic Lyme yet. Of course, you could always go for the IDSA approach, and hope those 2 weeks of Doxy cures it!
     
    justy likes this.
  20. trickthefox

    trickthefox Senior Member

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    I truly believe they will discover those who are suffering from chronic lyme will be found to have an autoimmune/immunodeficiency component if not route which is more significant than the persistent bacterial infection itself which is why the results from long/short term antibiotics are so varied, but thats a different discussion for a different thread. Im just really trying to find out the safety of long term rifaximin, not for the lyme, but for my gut issues, and if there are issues with resistance/symptom flare/biome worsening, but seems so far not so much
     
    Ninan likes this.

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