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If money was no object...which treatment?

Discussion in 'General Treatment' started by snowathlete, Aug 26, 2012.

  1. snowathlete

    snowathlete

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    I'm not in this position unfortunately but it's nice to dream.
    If You were given a blank check for treatment what would you chose?

    Rituximab?
    GcMAF?
    Valcyte?
    Something else?

    I reckon I'd be too scared to try rituximab, so would go for valcyte. I think.
    Little Bluestem likes this.
  2. jstefl

    jstefl Senior Member

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    I have taken 8 months worth of Valcyte, and have had some very worthwhile improvements from it. I was fortunate to have the Valcyte covered by insurance, and I was fortunate to be able to take it without any nasty side effects. it is clearly not for everyone.

    My choice for the "biggest bang for the buck" award is LDN. It is something that almost everyone can afford, and I feel that it has helped me more than anything else that I have tried, except for the Valcyte. I am taking 2 mg per day, so a $ 3.00 tablet is lasting almost a month. If you mix the Naltrexone with water to get your proper dose, you can start at an extremely small dose, and work your way up to whatever works best for you. That makes it possible for almost anyone to use it. With the three that you mentioned, you don't have that ability.

    John
  3. SOC

    SOC Moderator and Senior Member

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    My family has had good luck with Valcyte (2 remissions + 1 substantial improvement), so I tend to think of it as a top line treatment. :) Also, it may still be necessary to clear opportunistic herpesvirus infections, even with other treatments, so I figure it makes sense to get that out of the way in any case.

    At this point in my life, I'd go for Rituximab or Ampligen. As far as safety is concerned, I'm not sure Rituximab is any more dangerous than Valcyte at the dose and length of time needed. I already decided the medication was worth the risk because I had effectively no life anyway.

    To choose between Rituximab and Ampligen (assuming cost was no object), I'd want to do whatever testing was needed to determine whether I was a likely responder to each of them and go with the one that had the best chance of working for me.
    taniaaust1 likes this.
  4. Esther12

    Esther12 Senior Member

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    Holiday at a 5 star Caribbean resort... until I recovered.

    I'm proposing it to my Primary Care Trust right now.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have (from this list) only tried GcMAF and it has helped a good deal. It is not expensive if you take it at a low dose and get it directly from a doctor who doesn't mark it up much. Costs me about $50 per month. I'll stick with it for a while and see what else comes down the pike.

    Best,
    Sushi
  6. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    The supplements, hormones, Thyroid and cortisol worked for me. I would do that again for my CFS.

    For my POTS, that is doing very well. It is almost "just" Dysautonomia now. Diet and supplements are what I needed for that.

    My doctor and I try to stay away from meds.
    KathySkes likes this.
  7. SOC

    SOC Moderator and Senior Member

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    Dear heart -- hormones, including cortisol and thyroid, are meds. :) It sounds like your doc is doing a great job of treating your hormone imbalances (whatever the source of the dysfunction) with the currently available meds. Congratulations! Many people cannot get a doctor to do even that for for them. Are you still taking the hormones or have your hormonal disturbances been "cured" so that you don't have to take them anymore? A cure would be really encouraging for those PWME who have hormonal disturbances as part of their ME/CFS.

    What's working best for your POTS? I assume you're not taking a beta blocker or calcium channel blocker. I'm having some decent luck with electrolytes and lots of fluids at the right times of day. Do you do any other supplement that helps with POTS?
  8. SickOfSickness

    SickOfSickness Senior Member

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    LOL. I would literally do this, if I had a lot of money. I would try a bunch of treatments too.
  9. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Dear heart, ha... I knew someone would mention that. Yes, they are, but they are in the body, not like chemicals, antivirals, antibiotics etc. Antibiotics got me I this mess. The things I take are all compounded and much needed by the body. I am sure some people do fine with meds.

    There are very few cures for any illness so that doesn't concern me. I continue to take tests and we always change the amounts of what I take.

    For my disappearing POTS, I have Autonomic Neuropathy like half of people with it so treating the nerves is the key. Healing the nerves/myelin with Benfotiamine, Alpha Lipoic Acid, etc, diet, no gluten have been what I need.
  10. lerae

    lerae

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    I would go autologous stem cell (from bone marrow) and include the CCSVI liberation. And live in the country
    w/ fresh air and beautiful scenery. My friend had umbelical SC's. and recovered, just had a baby. She was diagnosed w/ Lyme as well. As she said..."I forgot even having it". ALthough Umbelical SC's are not the safe choice...autologous are.
  11. SOC

    SOC Moderator and Senior Member

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    Maybe I should have said "Sweetheart", for you certainly are a sweet southern (okay, Texan) belle. :D.

    Yeah, antibiotics can, and have been, grossly misused and have caused serious problems. I'm sorry to hear that you're one of the sufferers.

    Don't think you're going to have much luck arguing with a scientist that supplements and hormones are not chemicals. :D Everything's chemicals. Water is chemicals. You are chemicals.

    However, I see that you don't like to use antivirals and antibiotics and you're not alone in that. I noticed you've been supportive of rejecting legislation that would severely restrict our access to supplements. I agree with you. I think it's important that we all have the choice to manage the well-being of our own bodies in the way we see fit. It would be unreasonable if we were denied the choice to use supplements instead of prescription meds, wouldn't it? I mean, why is it the government's business how we choose to manage our health? I'm glad we have the choice to use supplements, prescription medications, alternative medicine, or any combination of them we feel works for us. Three cheers for democracy! Thank goodness we don't live in a dictatorship or theocracy that would tell us what we can and can't do with our own bodies!

    So treating nerves has been a big help with your Autonomic Neuropathy? I do take ALA, but I'll have to look up Benfotiamine -- that one's not ringing any bells. I sure would like to get this POTS thing under control.
    KathySkes likes this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    On my list was valcyte but through the help of a good friend I have been on valcyte for several months with good improvement, without this help i doubt i would have been able to afford valcyte here in australia or even generics from overseas.

    The only other thing i would like to try would by XYREM and growth hormone, both are very expensive and can help with sleep and general recovery.i have heard the odd person say that growth hormone has fixed their sleep.

    cheers!!!
  13. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I would fly out to CA and do the methylation unblocking treatment under the supervision of Dr. Nathan. I think it has the best benefit/risk ratio. If I needed antiviral treatment afterward, my body would be in better shape to withstand it.
    SOC likes this.
  14. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Benfotiamine is a fat and water soluble vit. B1. Yes, chemicals can be good and bad, but the body is harmed by many as we know.

    You have to determine the cause of the POTS/Dysautonomia. About half are caused by autonomic neuropathy. The cause of the autonomic neuropathy is another "fun" thing to try to find. But when nerves are not healthy, you can work to heal them.

    Yes, in America, we need to keep our supplements safe and easy to get. Other countries cannot buy them.

    SOC, how much ALA do you take? I take about 750mg, but you can take more.
  15. taniaaust1

    taniaaust1 Senior Member

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    I'd go the Rituximab route if I have a choice. Valcyte would be my second choice (as I do have a lot of virally stuff and know viruses play a part in my case).

    (I'd also like to be able to trial growth hormone).
  16. xks201

    xks201 Senior Member

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    I've never seen anyone get better significantly off of these fancy treatments like valcyte and other antivirals. I think stem cell therapy would be useless probably too as long as there are hormone problems and genetic mutations in adrenergic receptors. There are enough studies on fibromyalgia/POTS/CFS where they know exactly what is going on. It is increased levels of norepinephrine and awkward acting beta and alpha adrenergic function primarily which causes all the symptoms including immune suppression. Then we have the element of foreigners coming over and bringing their germs (we do the same to them) that we have no innate immunity too so we are harboring these bacteria which we were not made to carry. Combine that with a high sugar diet and the constant overgrowth of this bacteria produces more symptoms and neuro endocrine dysfunction.
  17. m1she11e

    m1she11e Senior Member

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    I have thought about this many times. My list is long and I can never figure out which order I would do what.

    In regards to Valcyte...it makes me think of all the things I "wish" I could afford. It was something my insurance covered easily and as soon as I had it I could hardly find anyone that it seemed to be helping. Some people said they were even worse off. I could never tolerate it and stopped trying. My point is that we all sit back and think maybe we would be well if we could afford it. Would we though?? Some people wish they could afford Valcyte and you could not pay me enough to take it again. Yet if I hadnt been able to try Valcyte, I would still be sitting back thinking that might be the elusive cure.

    I would at least like to do the basic things like dental issues, hormones, Xyrem (maybe), gut tests and treatments....
    The Rituximab scares the heck out of me! Going out of the Country for mysterious :cool: treatments not approved in the United States has always been a dream. ????

    Im sure I would figure it out as I went along!!!
  18. xks201

    xks201 Senior Member

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    I know people on here who take valcyte and are still just as screwed up as when they started it. Yeah maybe they can brush their teeth now without being out of breath but that's about it. If someone knows of a success story here though by all means prove me wrong.
    m1she11e likes this.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i took several attempts before i could tolerate valcyte. i needed to treat sinus infection and improve adrenal hormones and once i got this sorted the next time i tried valcyte i didnt have any issues. Im now at an 8 out of 10. i think treatment probably needs to be multi pronged.
    taniaaust1 and m1she11e like this.
  20. baccarat

    baccarat Senior Member

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    It doesn't make sense. What's the purpose of the question? For any particular treatment there's always a good share of people that either reacted badly or wasn't helped.

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