Methylation glutathione protocol thread1

Discussion in 'Fibromyalgia Main Forum' started by swedeboy, Mar 14, 2007.

  1. swedeboy

    swedeboy Member

    I wanted to start a thread specifically for people who are on the Methylation Cycle Block Protocol to post their progress.
    Glad to hear you're doing good on this protocol DELIAROSE..

    smiles, Swedeboy :)
    [This Message was Edited on 03/20/2007]
    [This Message was Edited on 03/25/2007]
  2. Slayadragon

    Slayadragon New Member

    I've definitely gotten a "reaction" to this protocol, although whether it is for sure "progress" remains to be seen. (I'm feeling significantly better recently, but it could be just that my Famvir die-off is, well, dying off.....)

    When I'm more confident about whether the methyl block stuff has done anything, I'll write an official post about it (here or elsewhere).

    For those who want to see what my reactions have been thus far to compare with their own reactions, please read my Famvir Status Reports (starting from Week Sixteen).

    I will look through the autism stuff and see if I have comments. I've been puzzling over the link between CFS and autism (there does seem to be one) for a while now, and it would be nice to figure it out.

    Best, Lisa

  3. swedeboy

    swedeboy Member

    Thanks for the support. No I haven't gone on the Swedish Royal Family website, but it sounds cool! I have been to sweden though, hehe.
  4. sophiekk

    sophiekk New Member

    I ordered the same supplements, and have been on them for a day so far. I remain sceptical, but then I'll also try anything that has worked for anyone at this point! I'll bookmark this thread and post updates.
  5. deliarose

    deliarose New Member

    and feeling more fatigue.. but not a bad fatigue.. also more relaxed cos I just feel in better shape.

    Fatigue thing seems to wax and wane. I take the supps at nite and I feel kind of muggy headed in the morning.

    I'm drinking a lot of water and loading up on glutathione (done this on my own initiative)..think it's helping. Hard to say.

    Trina on the Yasko/yahoo list tells me that some people on teh methylation program get a honeymoon for the first month and then it gets tuff.

    No more details. Will have to explore autismanswer to find out more.

    Really interested to see if it helps anyone else.

  6. deliarose

    deliarose New Member

    For the 2nd time.. (lol) for more info on this check out the yasko list at the Yahoo CFSFMexperimental list.

    There's a whole bunch of people who have been using the autism/yasko protocol for MONTHS now....

    It's all right there.. you just have to press some keys!

  7. clerty

    clerty New Member

    I have more hope in these protocols than anything else
    just to get a bit better would be like giving me a million dollars I am on the internet all the time looking and searching for cures my keyboard will have steam comming out of it before long LOL!!
  8. swedeboy

    swedeboy Member

    Could you elaborate when you say
    "Trina on the Yasko/yahoo list tells me that some people on the methylation program get a honeymoon for the first month and then it gets tuff."

    Thanks, Swedeboy :)
  9. deliarose

    deliarose New Member

    I have asked her to elaborate.. I think the point is you feel better, and then you feel worse....perhaps as the detox kicks in?

  10. Aelf

    Aelf New Member

    I'll be starting this program soon (today or tomorrow whenever the supps arrive), and I'll let you all know how it goes.

    I saw the honeymoon post on the yahoo group as well. I'm curious as to what happens after the 'dip' at 3-4 weeks.

    Another thing that confuses me is that the methylation cycle is involved producing things like creatinine, which I have normal numbers for.

    We'll see what happens,

  11. Slayadragon

    Slayadragon New Member

    I've now been on the methylation cycle block supplements for two weeks.

    I've gotten a lot better during that time. However, it is hard to say whether this is because of these supplements or because the die-off from the Famvir finally is decreasing.

    (deliarose had the same sort of question with regard to whether to attribute her rapid progress to the supplements or to the transfer factor finally kicking in. I'm kind of wondering if tackling viruses and the gluthathione problem together might be better than doing one or the other.....)

    Anyway, I've gotten a lot more energy in the past several days, enough to take mile-long walks. I've not been feeling this good in terms of my body since I've started the Famvir.

    The waves of feverish feelings that I associate with viral killing are almost gone too. So I do think that the Famvir die-off is lessening (meaning that I soon will move to Valcyte, I think).

    The Famvir has had a major effect on my brain during the entire time I've been taking it. Even though the herxing from the Famvir seems to have died down, the problems with my brain are continuing pretty much at full force.

    My mood has been better than it often has been on the Famvir, which is good. (Antivirals cause huge emotional instability, which is one reason why Valcyte users can be kind of touchy sometimes.)

    However, my cognitive abilities are still far worse than they were before I started the Famvir.

    I also usually feel like I'm seeing the world through an icky haze, which was not the case before I started the methyl block stuff. I also have had bad headaches on most days. (I've rarely had headaches at any time in my life, including all through my time on Famvir.)

    So my best guess at this time is that the methyl block supplements are doing major detox on my brain but little on my body. (I've never had any evidence--experiential or from tests--that toxins are a problem in my body, and so perhaps the latter is not a surprise.)

    I thus tend to agree that the glutathione is now getting into my brain. That is a good thing, if so.

    My cognitive limitations from the CFS have been (compared to those of many other sufferers) only moderate, but (as an academic) they have been by far the most frustrating thing about my illness for me. If I could get my mind back, my energy limitations (e.g. being able to do anything for an average of only 4-6 hours a day) would be much more tolerable.

    I have been interested in the "root-cause" similarities between CFS and autism (even though the symptoms seem superficially different) for a good while now, and am very interested in learning more.

    Unfortunately, the fact that parts of my brain are currently MIA limits my ability to study the topic or to peruse that Yahoo Yasko site. I plan to do those things when I am able, though.

    Thanks for continuing to share your thoughts.....they are quite interesting and much appreciated.

    Best, Lisa

    [This Message was Edited on 03/15/2007]
  12. Aelf

    Aelf New Member

    I started the methyl sups today.

    I feel wierd and slightly giddy (?), but I only took them 20 minutes ago.

    Getting 1/4 of those pills is a pain in the butt. I ended up with like pill powder everywhere :)

    Slight headache.

    Will update later.
  13. deliarose

    deliarose New Member

    well, I have noticed more payback this week in terms of sleeping more including day-time napping, which is somethign i hadn't done in a while.

    But I just feel better and better. Seems like I'm getting closer and closer to normal.

    Definately feel more motivated about getting on with my life, and less stressed. Tasks seem less challenging.

    Still off the sleep meds. Think that's about a month now.
    Don't miss them. Yeeha. I HATE taking pharmaceuticals.

    Also, just ran out of my Transfer Factor. My antiviral of choice. Immune Care 64.

    Unsure whether to order more. I don't think they could hurt, and I'm long past the herx stage, but I just wonder if they're necessary now.

    I keep reading that glutathione is a potent antiviral and possibly anti-microbial and therefore wonder if I'm wasting money on more transfer factor.

    I suppose I should check with my doc. Joe Brewer.

    anyway..for what it's worth. I hope this is not irrational exuberance, but I haven't felt this good .. normal..weightless in a long time.

    Long may it last.

  14. Aelf

    Aelf New Member

    Glad to hear you're feeling so well.

    Any tips on how to chop those tiny pills into 1/4ths?

  15. deliarose

    deliarose New Member

    I am taking a bunch of glutathione to help with the detox.

    This is not recommended anywhere as far as I can see, but it seems logical (you're detoxing, releasing toxins, and gluathione helps mop them up and get them out of the body.)

    I take a tablespoon of Lipoflow.. (which is that lipoceutical glutathione) in the a.m. with water ..on empty stomach.

    then later in the day...I nebulise a whole load of glutathione.. plus I put a drop of B12 in the nebuliser with the glut too.

    I got this tip.. mixing a drop of B12 with glutathione.. from Rich Van Konyenburg who got the tip from Professor Marty Pall.

    Interestingly, the makers of Lipoflow mix their lipoceutical glutathione with B12. There is some good biochemistry reasons for mixing the two.. which Rich went into on the CFSFM experimental list, but I can't remember it now!

    Do I know if this is helping? Couldn't say for sure. I feel crappy in the morning when I wake up. I take the methyl supps at nite. The morning blah feeling wears off slowly.

    I hope the glutahione is helping with that.

    Anyway, I'm putting all this out there in mind-numbing detail.. for discussion purposes only.. hoping that others will post their experiments too, so others coming behind can make connections and hopefully save themselves time and money.

    I have no commercial interest in any of these products.

    I get the nebulised glutathione from key Pharmacy in Kent, WA. You do need an Rx. My pcp was happy to prescribe...because it's harmless.

    I got the nebuliser for $50 off the web....

    Ok. Enuf already. Just trying to post this as I go along as when I'm well enough I won't have the time or interest.


  16. deliarose

    deliarose New Member

    not sure how to break them.. think you can buy a tool for cutting supps or drugs...

    I started off with 1/2 and now I'm on a full tablet/pill of the few supps I use.

    I'm the impatient kind.

  17. Slayadragon

    Slayadragon New Member

    At one point in that protocol explanation, Rich van K mentions the idea of using Valtrex along with the supplements. He suggests that viral killing happens with the glutathione, but that help might be necessary.

    Since the TF's not doing you any harm, the only thing that taking it does is cost some extra money. I don't know that I'd spend $150/month on it forever after you're well, but conceivably it's still helping you without your knowing it.

    Just a thought.

    I'm glad you're doing so well!!!

    Best, Lisa

  18. Slayadragon

    Slayadragon New Member

    That's helpful to know that you're taking a full pill of each. Perhaps that's part of why your progress is so fast.

    (The one time I took a 1/2 pill of the folate supplements, I got a huge detox. That's not necessarily a bad thing.)

    It's also good to know that you're taking the glutathione at the same time. I will ask my doctor about the nebulised.

    If you would, please supply whatever other details from Rich's core suggestions you changed (other than the TMG addition).


    Best, Lisa

  19. deliarose

    deliarose New Member

    yes, i only made teh link v. my progress and side effects and the dosage after I posted it. Duh.

    I don't think I would up the dosage from where I am now given my experience.

    Regards tweaking Rich's or the Yasko protocol. I don't really have good reasons for doing it.

    I didn't order all the supps cos of money considerations.

    I added TMG cos it was around the house.. had bought it before...and knew it was a mehtyl donor.

    Ideally, one would do the genetic testing and order all the supps...but life is not perfect.

  20. Slayadragon

    Slayadragon New Member

    How long have you had CFS?

    Best, Lisa