Curious about other protocols. Been using Jacob Teitelbaum's

Discussion in 'Fibromyalgia Main Forum' started by hubcap_halo, Apr 12, 2007.

  1. hubcap_halo

    hubcap_halo New Member

    Hello Everyone,

    I'm new to this board, but I'm amazed at all the helpful
    responses people seem to be getting.

    I've had CFIDS for 11 years and have good months and bad.
    Periods where I can work full time, then part time and months where
    I need rest.

    Right now I'm in a pretty bad relapse and I'm reevaluating my protocol. I've
    been working with a great doctor--Karen Vrchota--whose basic protocol is Jacob Teitelbaums, the FTF guy.

    I suppose if there was a fantastic new cure the boards wouldn't be so full, but I'm curious if anyone has found a doctor or protocol that is really helping?

    I live in New York City--I know it's crazy--and I love it and am trying to stay here.

  2. richvank

    richvank New Member

    Hi, Patrick.

    There is a new treatment, and it looks to me as though it has the potential to be a cure of at least a major subset of CFS. Dr. Vrchota and Dr. Teitelbaum are being kept up to date on it.

    What's different about this treatment is that it goes to the core issues in the pathogenesis of CFS, which are a block in the methylation cycle, coupled with glutathione depletion. When these are dealt with, it appears that all the symptoms of CFS will be eliminated, given enough time to detox the load of toxins that has accumulated and put down the collection of infections that have developed while these core problems have been present.

    If you want to find out more, you could read my hypothesis papers, which can be found at

    http://phoenix-cfs.org/GluAACFS04.htm

    and

    http://phoenix-cfs.org/GSH%20Methylation%20Van%20Konynenburg.htm

    My treatment article, based on the above, can be found here:

    http://phoenix-cfs.org/GSH%20Methylation%20Treatment%20Konynenburg.htm

    Several people on this board have been trying the simplified treatment approach discussed in this article, with good results. You can track them by reading the threads that have the word "methylation" in the title. The treatment consists wholly of over-the-counter supplements, primarily a combination of certain active forms of vitamin B12 and folate. The cost can be as low as $2.50 per day, if you leave out the optional, most expensive supplement. You can buy the supplements wherever you find the best price. Nobody is getting rich off this.

    There is another group doing the more complex treatment described there, at

    http://health.groups.yahoo.com/group/CFS_Yasko/

    This one is more expensive and more complicated, but some PWCs may need to do this, because of high toxic loads or special circumstances that make the simplified treatment too arduous for them, since it involves detoxing and can have unpleasant symptoms.

    I hope this is helpful.

    Rich
  3. hubcap_halo

    hubcap_halo New Member

    Rich,

    I'm reading up on this new protocol now. The board is hopping with it.

    Thank you so much,
    I've been 100% for periods of months in my 11 years of
    having this illness. I would love to find another piece to my own
    cure puzzle.

    best,
    Patrick
  4. Daisys

    Daisys Member

    Patrick Kelly,
    I also was being treated by a doctor who trained in the Teitelbaum protocol, and I got a lot better quickly. It got me to a certain point: no longer miserable, but still low in energy. I have had the relapsing/remitting sort of illness for almost 30 years.

    I just went to a new doctor, and he's sure I have lyme disease. He said that since I used the Dr. T's protocol, and all the issues were taken care of, there's got to be something else going on.

    I've been tested for lyme and heavy metal (waiting for results) and will possibly be getting tested for the usual coinfections.

    Meanwhile, I've added the Myhill (ribose plus) and the methylation block (just posted to this thread). Another thing I've added is Transfer factor, but it is so effective, I can only take one when I know I can be 'sick' for at least two days. Detox, I guess.

    Anyway, I've gone from about 20% of my best to 40-50% in the last year or so.

    I think The T. protocol is very good for getting a lot of basic issues looked at.

    Welcome to the board. It is great! :)
  5. hubcap_halo

    hubcap_halo New Member

    Daisys,

    Thanks for your reply.

    I found the same thing with Teitelbaum. Got better quickly, but never got past a certain point. I also tested positive for lyme and went through a long term antibiotic treatment. I had a very healthy period after that. And I've spoken with my doc about doing another treatment.

    I'm glad you're looking into these areas.

    I am reading about the methylation block now.

    Are you going to do the (expensive) Dr. Yasko genetic testing?

    Glad to hear you are feeling better.
    See you around here,

    Patrick



    atrick Kelly,
    I also was being treated by a doctor who trained in the Teitelbaum protocol, and I got a lot better quickly. It got me to a certain point: no longer miserable, but still low in energy. I have had the relapsing/remitting sort of illness for almost 30 years.

    I just went to a new doctor, and he's sure I have lyme disease. He said that since I used the Dr. T's protocol, and all the issues were taken care of, there's got to be something else going on.

    I've been tested for lyme and heavy metal (waiting for results) and will possibly be getting tested for the usual coinfections.

    Meanwhile, I've added the Myhill (ribose plus) and the methylation block (just posted to this thread). Another thing I've added is Transfer factor, but it is so effective, I can only take one when I know I can be 'sick' for at least two days. Detox, I guess.

    Anyway, I've gone from about 20% of my best to 40-50% in the last year or so.

    I think The T. protocol is very good for getting a lot of basic issues looked at.

    Welcome to the board. It is great! :)
  6. Catseye

    Catseye Member

    Hi Patrick, I've been doing a combination of Teitelbaum, Cheney, and the glutathione, methylation thing and it's working beautifully. I started all the supplements at one time in November when I was completely bedridden and to shorten a lengthy story, today I drove all around town, went shopping, went to a condo association meeting and fiddled around with alot of things at my house. I spent alot of time on my feet today and I feel really good.

    You can check out everything I'm taking under "what worked for me". I'm on page 3. The only thing I added that is making an additional difference is a supplement called Coenzyme A from vitacost. It is precursors to the metabolite known as coenzyme A and this is what it does:

    Reduces the damaging effects of stress and slows the deadly processes of aging.
    Initiates the TCA cycle that produces more than 90% of the energy the body requires to sustain life.
    Initiates the Acetylation blood cleansing and detoxifing process.
    Initiates the chemical reactions required by the human body to utilize Coenzyme Q10, Coenzyme 1 (NADH/Enada) and many of the other nutrients the body needs to stay healthy.
    Initiates the manufacture of the specific substances that facilitate critical functions of the brain and adrenal glands.
    Supports the development and functions of the male and female sex organs that are essential to human existence.
    Acts as the "universal acetate carrier"; it is the primary biological cofactor used in acyl group transfers. It initiates the metabolism of fatty acids, and supports pyruvate oxidation and other acetylation reactions.
    Supports critical functions of the immune system and facilitates the repair of RNA, DNA and physical injury.
    Facilitates the manufacture of connective tissue and the formation and repair of cartilage.
    Enhances physical performance and reduces the build up of lactate.

    Most of the ingredients are things I was already taking but I take this first thing in the morning, along with the mito fuel, and then right after breakfast I'm ready to get going.

    My post is very long and involved but it works. I started off taking what sounded like an insane amount of pills but I got results right away so I knew I was giving my body what it needed. And the end of my post are some very important articles listing some of our specific symptoms and what to do about them. It took me 4 years of searching to finally put it all together but I'm really coming out of it now. I have a new face to look at in the mirror and I haven't had the dying feeling for quite awhile.

    Everything I listed is very important. Don't do what I did: automatically dismiss certain supplements because I didn't understand enough about them. If I had paid attention to Teitelbaum's and Cheney's protocols a little better, I would have saved a few months of agony. It took me awhile to go back and take another look at what they recommended and I had to redetermine if I needed them or not. And I don't use any drugs except for dilantin for seizures (I've had since I was 15) and a nasal spray of antidiuretic hormone. I'm using only supplements to treat cfs. The hormone I don't think I'll need much more of since my hpa axis is starting to function more normally. At least, I think it is.

    good luck!

    karen
  7. Daisys

    Daisys Member

    No, I have no plans to do any of the tests at this point. I'm waiting for next week's appointment--I know the Dr. has a treatment plan in mind. I'm going to bring him Rickvank's explanation, and he's looking forward to learning about it. If he suggests any of the tests, I'm willing.

    I started taking the suggested supplements every three days or so. At first, I got a little headache after taking them, and taking the undenatured whey always gave me a little headache. After working up to it, as of this week, I take the supps every morning with the whey, and not getting headaches, so I'm considering that positive progress.

    I'm not sure what I'll do in the long run, but for now am content to have added this to my 'piles of supps' for the time being.

  8. richvank

    richvank New Member

  9. richvank

    richvank New Member