Why can't we just boost glutathione in CFS?

Discussion in 'Fibromyalgia Main Forum' started by richvank, Mar 29, 2009.

  1. richvank

    richvank New Member

    Hi, jaminhealth.

    From 1999 to late 2004, I encouraged PWCs to boost their glutathione by various approaches, including direct oral supplementation, IV, IM, amino acids such as NAC, nondenatured whey protein, nebulizing, and use of the liposomal glutathione products. These approaches did help quite a few of the people at least temporarily. However, with very few exceptions, it did not seem to bring glutathione up to normal and keep it there on a permanent basis. They had to keep doing these things to continue to experience the benefit.

    In October 2004, I reported this in a poster paper at the AACFS conference in Madison, Wisconsin. I wrote that I suspected that there was a vicious circle holding glutathione down, but I didn't know what it was.

    In December of 2004, Jill James and colleagues published a paper in autism that was very helpful to me. They found that in autism, glutathione was depleted, just as in CFS, but that it was associated with a partial block in the methylation cycle, which is located upstream in the metabolism from glutathione synthesis. I suspected that this methylation cycle problem was the other part of the vicious circle, and that the central biochemical problem in autism is the same as in CFS.

    In January, 2007, I presented the Glutathione Depletion--Methylation Cycle Block hypothesis for CFS at the IACFS conference in Fort Lauderdale. One of the physicians there asked me for a treatment based on this hypothesis, which he believed to be valid.

    With the help of Trina, who has posted to this board, I extracted the central part of the Yasko treatment, which eventually was boiled down to 5 supplements. I sent it to the physician, and I also posted it to this group and other internet groups.

    Early results with this treatment reported by people on this board, starting with Deliarose, suggested that it was addressing the putative vicious circle, and this eventually led to the open-label clinical study conducted by Neil Nathan, M.D.,which we just reported in a poster paper at the IACFS/ME conference in Reno earlier this month. I posted the paper on this board recently, but the tables and figures don't transmit, so if you want to see the paper in its entirety, you can go to the files section of the yahoo cfs_yasko group's website, or you can email me at richvank at aol dot com and I will email you a Word copy as an attachment to an email.

    This clinical study was very successful, in my opinion, and I think it provides support to the idea that a partial block in the methylation cycle does form a vicious circle with glutathione depletion in CFS, and that this vicious circle is what makes CFS chronic. We found that glutathione rose when we supported the methylation cycle, even though we did not supplement it, or provide additional amino acids to make it. The treatment was beneficial to most of the patients as determined both by lab testing of the methylation, folate, and glutathione parameters, and by the self-rating of symptoms by the patients. The study lasted a total of 9 months, and it appeared that the patients were continuing to improve at that time, so we can't say from this study how long the improvement will continue, or what total degree of recovery will be obtained. As usual, more research is needed, but I would say that things are looking good.

    There was a lot of interest in this study at the conference. At one point I was trying to answer questions from three people who were firing them at me more or less simultaneously. I gave away 100 hard copies of the paper, as well as the poster copy itself, and have been sending out copies to others who requested emailed copies.

    Several physicians expressed interest, and some said that they would try the treatment on some patients to see what response they get.

    The physicians who have been using this treatment for a while now are reporting that it is an important part of their overall treatment protocols. There is a small number of people who have reported that they are completely well after using this protocol. However, most of them also dealt directly with other aspects of their illness, including mold illness, Lyme disease, and viral infections.

    My impression at this point is that this vicious circle is indeed the core biochemical issue in CFS, and if a person uses this treatment early in their illness, it may do the whole job for them. However, if they have been ill for a long time and have entrenched infections, or if they have mold illness, these other aspects will need to be dealt with directly, in addition to lifting the methylation cycle block.

    I'm going to repost this response in a separate thread, so that others may find it more easily, if they are interested.

    Best regards,

  2. Mikie

    Mikie Moderator

    Thanks for this info. Hope you are doing well.

    Love, Mikie
  3. sascha

    sascha Member

    for the research you have done and the information you have provided our community. i may be looking into this treatment. i've done the anti-viral route, and got some relief, but still have a way to go.

    thanks very much- sascha
  4. Slayadragon

    Slayadragon New Member

    Hi Rich,

    A couple of questions.

    I'm at the point where I'm not getting many detox symptoms no matter how high I go on the methylation supplements. If I stop them for a few weeks (I've only done this once or twice) I do get a big detox. Otherwise I seem to be in a holding pattern.

    When I started moderate mold avoidance, my MCS flared for a number of months. This especially was the case when I was taking cholestyramine.

    After that, it pretty much went away.

    The exception is when I'm around a lot of chemicals for an extended length of time. What I'm finding then is that for a while I notice the chemicals, but get no reaction. After maybe 24 hours (i.e. in someone's hyper-fragranced home and in a new trailer), I suddenly seemed to hit a wall and not have any tolerance at all.

    It felt like to me that my glutathione ran out at that point. Maybe it was the methylation components, but I'm not so sure. I'm taking a LOT of them.

    (Forebearance gets that same sort of thing where she hits a wall, though she's at the point where her MCS is still higher than it was before the avoidance. She's feeling a lot better other than that though, she says.)

    I'm not sure how the satratoxins cause glutathione depletion in the cells (as the research articles I pointed out to you demonstrate). I think it could be from interrupting methylation component conversion, but maybe it's from directly influencing glutathione as well.

    Trina told me a while back that I should try taking something else to spur on methylation, but I don't know. I think I may be supporting it sufficiently already. Maybe the only major toxin I have left is the satratoxins, which (maybe) don't go through the methylation/glutathione channel.

    I got some liposomal glutathione and am sporadically taking it. But I've not had any super-exposure to toxins of any sort recently, so I can't tell if it's making a difference.

    Any thoughts?

    Best, Lisa
  5. Juloo

    Juloo Member

    I was at my yearly visit today with my FFC doc and asked about new diagnostics and/or treatments since I'd visited last year. Of the latter, I got some information on the methylation treatment of the 5 supplements type. So it is getting around.

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