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Supposed new possible treatment

Discussion in 'Latest ME/CFS Research' started by SpecialK82, May 9, 2011.

  1. Cort

    Cort Phoenix Rising Founder

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    It can't be the metlhylation treatment unless a study has been done it lately. Methylation tests also do not indicate who has infections. The information is out there (largely unnoticed) finding it is the problem. I imagine it was not on CFS....

    If the medication is 20 cents a day I don't think he's going to make much money off of it :)
     
  2. Cort

    Cort Phoenix Rising Founder

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    It appears that these Centers don't work well - which really surprises me because they appear to be doing all the right stuff that traditional MD's are not doing; they are testing for pathogens, using the 'right' tests for cortisol and hormones, looking to see if mercury and heavy metals are a problem, checking out detoxification problems, prescribing sleep meds when necessary, etc......

    I think From Fatigued to Fantastic is the most comprehensive treatment book on CFS there is (by far). If the Centers are using his protocol and its not working then I think you can throw that book out the window - which seems kind of wild.

    If these Centers are not working then I wonder if ANY doctor is really effective in treating ME/CFS. They're not that different from Myhill, Enlander, etc....are they?

    (Of course Peterson says very little of the alternative stuff works with his patients anyway. )

    Are most doctors barking up the wrong tree?
     
  3. Forebearance

    Forebearance Senior Member

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    I don't think I would draw that conclusion, Cort.

    He may know lots of helpful things to do, but most of us couldn't handle starting all of them at once. Most people with CFS seem to require finesse and a lot of individualization in treatments.

    For example, every time I added one hormone supplement, it took a month or two to get the dose right. If you don't add one treatment at a time, how could you tell which ones were helping or causing problems?

    The doctors who work at those places seem to be really rigid and inflexible and bullying and seem to be ingnoring input from the patients. Or at least some of them are, from reports like Nielk's.
     
  4. Nielk

    Nielk

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    Hi Cort,

    You are right that they seemed very knowledgeable and did a lot of testing. In my situation for example they came up with so many different issues like, inflammation, viruses - like ebv, cmv, HHV6, cortisone defficiency, hormonal problems, endocrine problems etc..

    The way the doctor there explained it to me is that you have to attack all problems at the same time otherwise you will not get the proper effect. I tried to fight doing too much at once because I knew from previous experience that my body is very sensitive to medications and I often have adverse effects. At first I started slow but they kept pressuring me to do it all, otherwise it will not work and I will not get the full benefit of the treatment. Once, I gave in and let them do what they want, I was doomed because my body crashed. I don't think that they understand how fragile and sensitive most of us are.

    I guess they figured if they treat all aspects at once, we will get better and recommend the center to others but, it just doesn't work like that for us "canaries" (that's what my friend calls us)

    I still think that the book has good advice in it. I wouldn't throw the book out but, I would tackle one thing at a time and start everything with very low dosage and watch very carefully how your own body is reacting.

    It seems to me like it's a paradox. We really need strong treatments to eradicate our problems but, our body won't allow us to do that.
     
  5. leaves

    leaves Senior Member

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    i think it is LDN he is talking about
     
  6. richvank

    richvank Senior Member

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    Hi, all.

    In my view, the issues addressed by the treatments used by these centers are mostly downstream of the core issue in the pathophysiology of ME/CFS, which I believe is the vicious circle involving the partial methylation cycle block. Dr. T. has been receptive to adding methylation cycle treatment, has mentioned it in the latest edition of From F to F, has promoted it to the physicians at these centers in the past, has written about it on his website, and most recently has posted Dr. Neil Nathan's report on his website and has written the foreward to Dr. Nathan's new book, which discusses the methylation treatment among other treatment approaches for ME/CFS.

    However, I don't think there has been much response from the FFC physicians. There was one in Atlanta who tried methylation treatment on at least one patient, and wrote me about it, but I don't know what the outcome was. It appears that Dr. T. works in an advisory capacity with these clinics, and doesn't make final decisions about the treatments used in them.

    Best regards,

    Rich
     
  7. Mog

    Mog

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  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    pregnenolone can help some as it improves neurotransmitters like noradrenaline, serotonin etc and also hormones like cortisol, dhea, progesterone and testosterone and seems to work well for most people with general fatigue but people with cfs/me its very hit and miss. My experience is i had a few days of feeling almost normal and then it went down hill with worsening insomnia, i was getting angry and pee'd off at everything. My doc said that cfs/me patients have dysfunctional hypothalamus which controls alot of these hormones etc so using pregnenolone can just throw a spanner in the system. But still i think people should give it a try, it maybe what they need but i would start at much lower doses like 10mg and slowly work up to maybe 50mg.

    cheers!!!
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    ok after reading that link from tettlebum, his so called theories on pregnenolone have been around awhile, most antiaging type doctors use pregnenolone for the reasons he has stated, so thats nothing new. He mentions interferons, well thats been known about for awhile too, ampligen is the big one that can help improve interferon which then helps improve nk function and then fight viruses etc. Immunovir and cycloferon are other substances that can help interferon, so thats not really new or earth shattering. The cholesterol drugs having antiviral properties is a new one so be interesting to see how that pans out, mm

    cheers!!!
     
  10. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Don't statins CAUSE possible mitochondrial damage and DEPLETE CoQ10?
     
  11. glenp

    glenp "and this too shall pass"

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    I think that most physicians that prescribe statins, prescribe CO Q10 along with it, which is also what Dr. Teitelbaum is suggesting.
     
  12. Mog

    Mog

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    I have tried hydrocortisone before, which had a very bad effect on me quite quickly, made me very depressed and it took months to get back on an even keel after stopping it. Presumably that means I should avoid pregnenolone? Or do they work in quite different ways? I do have low cortisol levels from the 24 hour saliva test. Thanks.
     
  13. pine108kell

    pine108kell Senior Member

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    All other things about Dr. T aside, what does this mean that he is using Google to find out the antiviral properties of statins? Has he ever heard of PubMed or correspondence with other doctors? And there must be other more professional ways to find out this info. So what if there are a half million hits--how many of them are advertisements or just a webpage that just happen to mention antivirals and statins.

    I was once a professional scientist and I cannot imagine going to Google first before looking up professional journals or the appropriate correspondence.

    It says a lot that he, as an MD, admits to just sloppily using Google and cannot, or will not, look up professional, scientific sources first. How strange.
     
  14. leaves

    leaves Senior Member

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    maybe he meant google scholar..
     
  15. pine108kell

    pine108kell Senior Member

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    Ok, surprised I had not heard of this. Thanks very much for pointing it out. Shows how far out of touch I have become.

    Anyway, I got 8,500 hits with those keywords so it may not be what he was doing. Still, those hits have 100 times more value than regular google.
     

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