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If there were no barriers, financial or otherwise, what treatments would you try

Discussion in 'General ME/CFS Discussion' started by littlebird6180, Mar 3, 2017.

  1. littlebird6180

    littlebird6180 Senior Member

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    I'm curious to know what some of the groundbreaking but out of reach but promising treatments out there that people would try.

    For instance, stem cell therapy, fecal transplants (there was another but sigh...my brain doesn't work enough to remember).

    Are there therapies that exist that hold promise but aren't attainable due to cost or other reasons?
     
    bspg, Mesurfer, ArunP and 3 others like this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    At the moment we have many "helps some with some symptoms" treatments but even those may not be available. The two in this category that helped me the most are no longer available due to regulatory issues: GcMAF and Nexavir.

    It may be a time for waiting, as research will probably be pointing to interesting new approaches quite soon.
     
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  3. perrier

    perrier Senior Member

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    Excellent excellent question. I wonder this too.
     
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  4. perrier

    perrier Senior Member

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    You hit it on the nail when you say helps some with some symptoms.

    But the second point envelopes me daily: when will be there be something that really helps. How soon.
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Dr. Ron Davis said that there will be an important break-through by the end of the year, but we don't know how long it will take to translate to treatment.
     
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  6. Mary

    Mary Senior Member

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    I believe many people would like to try rituximab if given the opportunity. I don't know if it's something I would like to try myself, I think for now I'd like more studies done on it.

    Apart from that, I don't know of any effective treatments, apart from several nutritional supplements which have improved my quality of life: d-ribose, methylfolate, MB12, P5P, branched chain amino acids (the BCAAs cut my PEM recovery time in half), B1, potassium gluconate, foods high in phosphorus (kefir, sunflower seeds), niacin or niacinamide for sleep, adrenal glandulars (e.g., Drenamin by Standard Process), Naturethroid (desiccated thyroid) and andrographis - the andrographis has helped me a lot with a near-constant sinus infection of some type, as well as helping my adrenals and thyroid.

    I would be noticeably worse off without any of these.
     
  7. Dainty

    Dainty Senior Member

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    A tropical island all to myself with everything I need - good food, stable housing, and sufficient income to live off of.

    I have been in recovery for the past 5 years after cranial osteopathy treatment, but stress significantly slows the recovery process. The treatment I would try, if money wasn't a factor, is some sort of ideal living situation, and then relax, rest, and heal.
     
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  8. Mary

    Mary Senior Member

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    Oh yeah, that too! :nerd::thumbsup:
     
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  9. Learner1

    Learner1 Professional Patient

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    Comprehensive IV therapies can be extremely helpful, as they get the job done more quickly and effectively than oral anything.

    These would include mito cocktails, customized nutrients, lipid replenishment, immune system support and immunomodulators, and antiviral or antibacterial substances.

    Oxygen therapies, including HBOT, ozone, rectal insufflation, and the related UVBI can be very helpful, too.

    Fecal transplants are interesting, too, as long as we didn't pick up anything unsavory.

    And metabalomics and other testing to know what's wrong, so that the above can be individually customized.
     
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  10. Skippa

    Skippa Senior Member

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    Full blood transfusion?
     
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  11. justy

    justy Senior Member

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    Rituximab for me - but only if I didn't have MCAS and all that entails...
     
    Invisible Woman likes this.
  12. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    fecal transplant, full blood transfusions as @Skippa mentioned earlier. I'll get tested for all sort of pathogens including hhv-6, coxsackie virus, borrelia, giardia, etc, and treat the potential infections. I'll get medication for POTS, such as fludrocortisone
     
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  13. wastwater

    wastwater Senior Member

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    I think I would use money to gain further information starting with a whole genome scan
     
  14. littlebird6180

    littlebird6180 Senior Member

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    Someone on here said they had a friend who had recovered through stem cell therapy. Does anyone know more about stem cell therapy effectiveness?

    Rixumitab scares me - feels too risky although I certainly don't blame anyone for trying.
     
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  15. jstefl

    jstefl Senior Member

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    I would try IVIG
     
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  16. belize44

    belize44 Senior Member

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    I would splurge on a stay at an Ayurvedic spa, where they do gentle detox and Panchkarma treatments. I read about this and was very intrigued.
     
  17. littlebird6180

    littlebird6180 Senior Member

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    After reading more about stem cells, seems like I'm going to scratch that idea off my list
     
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  18. maybe some day

    maybe some day Senior Member

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    I don't want any more treatments.Too many times my heart broke from hopes that never became a reality. If I had endless supply of finances..I would give it all to Ron and his team. Im handing the baton to him on my knees because honestly for me, nothing really ever worked to make me feel that much better. I gave up searching quite some time ago.
     
    Last edited: Mar 4, 2017
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  19. dangermouse

    dangermouse Senior Member

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    Honestly, I don't know. I don't feel competent with knowledge as yet (brain is hit and miss) and am tentatively hopeful of Ron's research (as well as the other promising research currently being undertaken).
     
  20. littlebird6180

    littlebird6180 Senior Member

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    This really hit home for me. I too would invest in his research if I could and I'm pinning a lot of hope on it. Right now I guess it seems like there's a lot of research showing promise and maybe just hanging on for another few years until they develop a treatment. I hope to see Whitney recover and am grateful not to be as sick as he is.
     
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