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best treatments at the moment

Discussion in 'General Treatment' started by andreasvq, Feb 16, 2016.

  1. andreasvq

    andreasvq

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    Hi everyone,

    I am new to this forum so what I want to say first is that I absolutely love it and I want to thank everyone for all the useful information, especially regarding treatments and doctors! I am sorry for my language mistakes, English isn't my first language.

    I am now struggling a little over 2 years with chronic fatigue syndrome and my illness has slowly getting worse. CBT and GET don't work at all and I am now looking at others treatments.

    What options do you think are the best ones to try? I did a lot of research and Rituximab seem to be the most effective treatment so far. I will probably travel from Belgium to the Open Medicine Institute in Mountain View, CA to get the treatment.
    Antivirals (Valcyte, Valtrex, ...) seem to be another good option. Are there more treatments that I should try?

    Any advice is greatly appreciated!

    Andreas
     
  2. Theodore

    Theodore Senior Member

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    Hi Andreas,

    Welcome!

    Dr. Kenny de Meirleir has a practice in Bruxelles and I think one of the treatments he uses is antiviral.
     
    andreasvq likes this.
  3. andreasvq

    andreasvq

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    Thank you for your advice. The problem is that Dr de Meirleir does not give rituximab, so I will have to travel to the US. Are there many people who got better with the help of Dr. De Meirleir?
     
  4. Theodore

    Theodore Senior Member

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    You are right, he doesn't but isn't it better to try something a little bit lighter at first?

    Besides, depending on your symptoms and first trigger you can try so many things before getting to Rituximab.

    I don't know if it's true or not but according to him, nearly 50% of his patients are much more better. It's what he says in one of the videos of MECFS Alert, you can find those here.
     
  5. andreasvq

    andreasvq

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    Another thing is that my parents who will pay the treatment (I am only 19) don't trust him because he is removed from the order of medicine. So KDM is just not an option.

    It might be a good idea to start with other things before Rituximab but then I would like the best doctor to do it and that has to be dr kogelnik and dr kaufman.
     
    Kati and Esther12 like this.
  6. Theodore

    Theodore Senior Member

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    I didn't know that. Do you have a link or something about this please?

    It's true, they do offer other treatments.
     
    Violeta likes this.
  7. andreasvq

    andreasvq

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    I don't find a link but my parents said it to me.
    I will ask them where they heard it, if they mean another doctor then I can go to KDM.
     
  8. andreasvq

    andreasvq

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    But I doubt that KDM is better than the doctors in California.
     
  9. roller

    roller wiggle jiggle

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  10. ahmo

    ahmo Senior Member

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    @andreasvq Pr member Hip has created a Roadmap for testing and treating ME/CFS. This might be a good place for you to start. Also, pr member Jaime has created 2 excellent docs about understanding ME/CFS, simple and simpler. Rituximab is still experimental.

    Myalgic encephalomyelitis: a multi-system disorder Myalgic encephalomyelitis, or ME, is a disorder classified as a neurological...
    http://forums.phoenixrising.me/inde...cephalomyelitis-a-multi-system-disorder.1814/

    or : an even shorter note for your actually-interested doctor To give you a sweeping generalization of the currently competing...
    http://forums.phoenixrising.me/inde...t-md-do-spiritual-advisor-family-friend.1832/
     
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  11. Esther12

    Esther12 Senior Member

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    This is probably not what you want to hear at 19, but personally, I'm not sure that there is evidence of a worthwhile treatment for flying over to see specialists for. It seems that younger people are more likely to just naturally recover (although many do not), and there is research on rituximab coming that should give us a better understanding of it's value and who it is likely to benefit.

    It's worth trying to get checked for alternative diagnoses, but I'm not sure that there's any particular treatment for 'CFS' that I would recommend right now.
     
    dannybex, Sidereal and geraldt52 like this.
  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hi @andreasvq

    Welcome to PR
    No one will just prescribe any treatment. First there must be testing. KDM can probably do that at least and you can see what he finds and what that might mean for treatment. And then decide how you want to proceed. I don't think the testing will be any more thorough in the US. I could be wrong.

    But if part of the purpose is to see California then I guess it wouldn't hurt to stop in if they are taking new patients.
     
  13. Sushi

    Sushi Senior Member Albuquerque

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    I am not sure what those words mean? He is definitely licensed to practice medicine in Belgium, the US and I think Norway. I see him in the US. He has helped me a great deal and his testing is comprehensive.
    He is retired from teaching now and concentrates on clinical practice.
     
    Pacificjade, Helen, helen1 and 5 others like this.
  14. lansbergen

    lansbergen Senior Member

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    Who told them that?
     
  15. andreasvq

    andreasvq

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    I just trust the doctors in California more because they seem to be doing more research and are the only ones who treat (some) patients with Rituximab.
     
  16. JES

    JES Senior Member

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    Well one could argue that a trustable doctor wouldn't prescribe Rituximab for CFS in the first place due to the risks associated with it, especially considering that the Rituximab CFS studies are still far from finished and conclusive.

    There are some other treatments available meanwhile, I think some of the most popular ones on this forum are methylation, LDN and antivirals (the mentioned Val-drugs, Equilibrant)
     
    dannybex likes this.
  17. andreasvq

    andreasvq

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    Thank @JES for your advice. I just think Rituximab is the best treatment that exists at the moment and for me it's worth the risk. Another thing is that Dr. Kogelnik works together with many of the top researchers in the field (think Ron Davis, Dr. Montoya) and when there is one doctor who is likely to find a cure someday it might be Dr. Kogelnik.
     
  18. Theodore

    Theodore Senior Member

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    Actually it's not the best since the success rate isn't really that different than antiviral like Ampligen.
     
    dannybex likes this.
  19. andreasvq

    andreasvq

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    @Theodore Didn't know that. Do you have a paper/link that can confirm that?
     
  20. sarah darwins

    sarah darwins I told you I was ill

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    I'm trying to remember, but wasn't there also a suggestion that the relapse rate from Rituximab was pretty high?
     

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