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Top 10 treatments for CFS list

Discussion in 'General ME/CFS Discussion' started by sorin, Dec 6, 2015.

  1. sorin

    sorin Senior Member

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    Last edited: Dec 6, 2015
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  2. TiredSam

    TiredSam The wise nematode hibernates

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    I'd put pacing at the top of the list.

    Haven't tried the rest. A guy at my ME self-help group tried D-Ribose and said he felt great for 5 days, almost normal. Then after the 5th day all positive effects stopped. He thinks his body re-adjusted and just produced less of whatever it was he was consuming more of.
     
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  3. sorin

    sorin Senior Member

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    That's bad. And even if D-Ribose would help for energy I am wondering how the other problems (such as neurological ones) can be solved? Or these ones, once installed can not be cured?
     
  4. Denise

    Denise Senior Member

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    My understanding is that many specialists ask patients to rank their top 3-5 symptoms and treatment begins based on trying to ameliorate those symptoms.
     
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  5. digital dog

    digital dog Senior Member

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    Thank you of this list.
    I am interested in what other people think about the supplements/drugs suggested.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    The list seems very old as it mentions at least one as a treatment for XMRV! I personally do not tolerate any Vit B or methylation supps and cannot tolerate multi-vitamins with too many ingredients in them. Things like that make me very agitated or give me tachycardia. I tried d-Ribose 2-3x a day for over a year and it had absolutely zero affect on me (good or bad.) Have not tried the other things on the list but tried other anti-virals.
     
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  7. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    The best treatment currently is Rituximab
     
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  8. minkeygirl

    minkeygirl But I Look So Good.

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    Where is Valcyte, Famvir or valtrex?
    Pick any one on that list and start.


    Rutiximab is not available for treatment as it is still in clinical trials and there are those that feel a certain subsets of patients, those plagued wjth infections, (like me) would not be a good candidate. They still as far as I know havent figured that out.

    To just say rtx is the best is premature. I'll take. Ampligen please.

    Treatment Is individual. If it was one size fits all then there wouldn't be all these people using different therapies, different supplements and having different outcomes

    As @Gingergrrl Said that list is outdated. 5 years is an eternity. If you're looking for treatment why look at something so old. Look at @Hip roadmap.
     
    Last edited: Dec 6, 2015
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  9. Esther12

    Esther12 Senior Member

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    Do we currently have good evidence for one treatment? Probably premature for a top 10.
     
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  10. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    My point is that no other medication for ME, has the same promising data as rtx. do
     
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  11. minkeygirl

    minkeygirl But I Look So Good.

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    And I disagree.

    This is the same frenzy that went on with XMRV. I didn't hop on that bandwagon and I won't blindly follow this.
     
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  12. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    No it is not.. With XMRV one searched for a virus, with the rtx-trials one is treating ME with medication. And two thirds respond to some degree. One third has major responses. If you disagree, show me other clinical trials with the same promise in terms of remissions.
     
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  13. minkeygirl

    minkeygirl But I Look So Good.

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    Im not interested in debating this. I'm not interested in producing data. There are threads all over the place on this. It's ongoing.

    My answer to the original post is if someone is looking for treatment NOW, a list from 2011 is not where I would start. Thing have evolved over the last 4-5 yrs.
     
    Last edited: Dec 6, 2015
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  14. Aurator

    Aurator Senior Member

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    Agreed.
    I'd have been inclined to name the thread "Top 10 least useless treatments for ME/CFS".
     
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  15. minkeygirl

    minkeygirl But I Look So Good.

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    It still left off antivirals. That's top 5 for me. Top 2 even.
     
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  16. Mary

    Mary Senior Member

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    @sorin - d-ribose did help me noticeably with energy when I first started taking it 10 years ago (how time flies! :eek:), and actually still seems to help my energy. I tried cutting it out for a couple of months, a couple of months ago, and gradually realized my energy was not what it used to be, so I went back on it.

    I think inosine may also be helpful for me. My HHV-6 number has dropped significantly in the last 2 years, and it's the last 2 years that I've been taking inosine - it may be a coincidence, maybe not.

    The list is a little old but I wouldn't call it useless. We all have to do our own research and trial and error experimentation and I think there are some things on the list worth exploring, but as mentioned above not up-to-date and omits many things (like antivirals) which have helped a lot of people.

    I've always wondered about Nexavir - I don't know it it's still available, and why was it so pricey, and if it helped people so much, why isn't it still available - anyone?
     
  17. Sushi

    Sushi Senior Member Albuquerque

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    I find Nexavir very helpful and have no idea why it is so expensive. When it was called Kutapressin and made by another company, it was much less expensive. Nexavir is no longer available in the US, but is available in the Netherlands and called 4ME, and is slightly less expensive--90 euros for ten, 2 ml ampoules. http://www.kalidashop.com/en/4me.html
     
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  18. Mary

    Mary Senior Member

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    @Sushi - can you tell briefly how Nexavir helps you - what symptoms it helps with?

    And how much and how often do you take it? How long do the ten 2 ml ampoules last?
     
  19. Sushi

    Sushi Senior Member Albuquerque

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    It helps my symptoms pretty much across the board. Also, since I've been using it (some years), I've had no herpes simplex outbreaks--which used to occur regularly.

    I sort of ration it since my insurance stopped paying for it and only inject 1 ml whereas 2 mls would probably be better. I inject every other day. So ten, 2 ml ampoules will last me about 1 1/2 months.
     
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  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I didnt think there was any data as they weren't releasing it until they have passed through certain trials. I may have missed something though?
     
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