The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
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Jacob Tietelbaum

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by mstrlucky74, Jun 12, 2014.

  1. mstrlucky74

    mstrlucky74

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    I am reading his book "from fatigued to fantastic,. He says that he can diagnose CFS with one question. How's your sleep?

    So if you sleep okay you don't have CFS?
     
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  2. minkeygirl

    minkeygirl Senior Member

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    I don't know if he's the authority you want to listen too to determine if you have CFS. (My opinion) I think that is a huge over simplification of this disease.

    Dose that then mean that every person with insomnia has ME/CFS? I think it minimizes the seriousness of this disease which is a much more involved than that.
     
  3. TigerLilea

    TigerLilea Senior Member

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    Personally, I don't think too much of Dr. Tietelbaum or his book. He makes it sound so easy to get relief from our symptoms and I've found that a lot of what he recommends doesn't work. :thumbdown:
     
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  4. TigerLilea

    TigerLilea Senior Member

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    I forgot to add that how you sleep has nothing to do with whether or not you have CFS. For the most part I sleep reasonably well, however, I wake up each and every morning without having a refreshing sleep and start my day off exhausted and go down hill from there.
     
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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think his abbreviation SHINE is a helpful way to set out a plan of treatment. As to DrT's recommendations, many are over rated or he makes it sound too easy to treat sleep or hormones or infections etc. But I think it's a sound outline of a plan. Nothing startling in his book though. Good for beginners? ?
     
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  6. minkeygirl

    minkeygirl Senior Member

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    My sleep is totally crap but I have a buttload of other problems.
     
  7. minkeygirl

    minkeygirl Senior Member

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    I don't know anyone who says he helped them, maybe an odd lucky person here and there and his methods are the same they were 20 yrs ago. He has. It changed much of what he is doing and over simplified things like @heapsreal said.

    I remember he was in dr oz a few years ago and a woman raved about the fatigue clinic that many people said are a waste if money.
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Plus he doesn't really distinguish between those with ongoing fatigue and those with ME
     
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  9. minkeygirl

    minkeygirl Senior Member

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    It just doesn't seem like he's in the forefront in the way of treatment. Back when he started supplementation on its own was huge. They didn't know that much about the viral or immune aspect of the disease.
     
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  10. IreneF

    IreneF Senior Member

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    I don't think he participates in any of the conferences or publishes in the medical literature.
     
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  11. ahmo

    ahmo Senior Member

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    This is a really interesting conversation. When I returned to my GP w/ ME/CFS, he told me he really didn't know anything about it. But as he was willing to take me off synthroid and use some other thyroid replacement, I stayed w/ him. He handed me a big wad of paper w/ Teitelbaum's recommendations. Most of them were medications, told me another pt. had left this w/ him.

    I slowly went through the pages, eventually followed a number of his suggestions. As I was reflecting on this recently, I observed that with the exception of low-dose Klonopin, which helped for awhile, every other of his recommendations actually caused me problems. Using whey to replace glutathione, plus probably D-Ribose at the same time, topped up by a 2nd sleeping med when I was having even worse insomnia, pushed me into a toxic psychosis. The psychiatrist in the hospital pointed his finger at me, "Didn't you know there were amphetamines in that sleeping med?" :bang-head::mad:

    Yes, at least in the pieces of his protocol I chose, it all seemed intended to combat the fatigue with things to *energize*. Disastrous for my overly-active and sensitive nervous system.
     
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  12. soxfan

    soxfan Senior Member

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    I also tried a few things from his book and they only made me feel worse. The D-Ribose made me wired and feel awful. I wasted quite a bit of money on his methods because I was desperate wanted to feel better.

    My sleep has become much better over the years especially since quitting sleeping pills. I still use .025 of Klonopin and have for 2 years now. I wake a few times in the night but basically can't complain. The only time I have trouble falling asleep is if I have really done way too much and then I am totally wired inside. I wake un-refreshed every day as well. 2 sleep studies show nothing except that I have difficulty falling and staying asleep.

    I think a lot of us read his book because we hope something he suggests might actually help. I have found NOTHING to help with my daily fatigue.
     
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  13. maryb

    maryb iherb code TAK122

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    @ahmo
    my experience exactly.
     
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  14. ahmo

    ahmo Senior Member

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    @soxfan Something hopeful for you: After about 6 months on B12/folate protocol, my life-long insomnia resolved. Now, another 6 months on and post-major detox, not only my sleep issues resolved, but a whole different version of calm has emerged. The end to a life time of irritability, agitation, low threshold for frustration. :):balloons:
     
  15. minkeygirl

    minkeygirl Senior Member

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    @ahmo I just started methylation. I'm in the agitation, frustration and anger phase. It would be great if it helped that and the insomnia. I've had sleep problems as far back as I can remember.
     
  16. ahmo

    ahmo Senior Member

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    @minkeygirl I'm sorry you're experiencing:mad::aghhh::bang-head:. I hope it passes soon, and you find some space of:angel::cat::whistle:
     
  17. lnester7

    lnester7 Seven

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    I had 3 remissions on his vitamine powder, I just cannot tolerate in stomach otherwise I try to take as much as I can. I think the main thing is to treat:
    Sleep
    Hormones
    Infections
    Autonomic.... I forgot a few but even if you do not follo whis protocol suggestion, he has a good outline to follow so you can dig on your own.

    My best recommendation see a Good CFS Dr so you don't loose as much time as I did.
     
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  18. minkeygirl

    minkeygirl Senior Member

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    @ahmo, I figured out a small dose of seroquel helps with the seething anger. The sleep? Well that was an unexpected bonus since I wasn't aware methylation helped with that. Time will tell.
     
  19. minkeygirl

    minkeygirl Senior Member

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    Bear in mind as I say this that I've got some serious anger going so I'm just speaking my general annoyance at people saying everyone should see a CFS specialist. Like it's so easy.

    We all know:

    1. They are few and far between
    2. They have waiting lists.
    3. People can't get to them
    4. People can't pay for them if they could get to them
     
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  20. ahmo

    ahmo Senior Member

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    @minkeygirl In my recent clearing, it became clear that much of the anger I had was liver/adrenal based. As I'm writing this, it seems as if in the absence of the toxic load, all the hooks for anger dissolved. As if there had been a velcro surface there, catching every negative feeling, and it's been replaced with satin.

    Added: And, to add to your comments re CFS dr., as Teitelbaum experiences show, seeing someone focused on CFS might be absolutely the wrong direction.
     

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