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Most Abrupt Treatment Turnaround - Dr Cheney

Discussion in 'ME/CFS Doctors' started by xlynx, Jan 10, 2010.

  1. xlynx

    xlynx Senior Member

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    Hi , was interested to see Cort post this:

    Most Abrupt Treatment Turnaround - after examining the results of his ‘event terrain’ scans of his echocardiograph Dr. Cheney proclaims that whey protein powder, D-Ribose, omega-3 fatty acids, methylation supplements and other commonly used supplements are actually harmful to ME/CFS

    I started taking why protein powder because Cheney suggested it boosted L Glutathione. :confused: In fact from what I read hes even against Co q10.

    Firstly does anyone know the reasoning behind why he has changed his mind and secondly how does everyone feel about this. I cant help but feel very confused about Cheney. He just seems to sway in the wind. even though I appreciate his dedication to cfs something is strange about the way he operates.

    Thanks,
    Jerry
  2. fresh_eyes

    fresh_eyes happy to be here

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    Hi Jerry. Is there more info about his rationale somewhere?
    I feel just the same way about him - I appreciate his commitment, but I don't know what to make of him either.
  3. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi xlynx,

    I admit, what Cheney does sometimes seems really confusing. I believe his turnaround on the whey, CoQ, etc. is due to his starting to use the Echo terrain mapping procedures with his patients. He tests, medications, supplements, etc. on his patients and measures their response according to the echocardiogram equipment. He believes that he has had good luck with his patients using this. Rich V. and others disagree that this method can correlate with long term effects of a particular medication or supplement. It's definitely complication. I am just happy that people with this much intelligence are working to try to help us improve our health.

    I am not a patient of his, but a good friend of mine is. She has seen him for several years and has made some good improvements - especially lately.

    He does seem to sway in the wind because he changes what he recommends based on new experiences and information. And, the reason that we know that he has changed his protocols is because he has shared the information on his treatments thru support groups, the internet and on DVD's. Other docs don't do this so we don't really know how much they are changing their protocols.

    And it is strange the way he operates. He seems to have more of the personality of a physicist (which he also is) ratherthan an M.D. Is that a good thing?? Ya got me! :Retro smile::Retro smile::Retro smile:

    Take care,

    Maxine
  4. alice1

    alice1 Senior Member

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    Well this sucks.I just bought a vat of whey protein powder.Guess I'll just have to try it and see how I feel.Damn.
  5. xlynx

    xlynx Senior Member

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    The problem with Cheney is that he gets to his conclusions with scientific backup and so I cant ignore his opinion. But damn every time I look at my Co Q10, Ribose etc I got that doubt in the back of my mind that I am not optimizing my healing path. Its so frustrating to not know if your following the right protocol.

    I am sure CFS stands for Confused, Frustrated and Stressed! :)
  6. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi xlynx,

    I understand completely, we are in the same boat here - all searching for the right protocol for us. Unfortunately, we are bereft without enough doctors and researchers working for us and with us.

    And you are right about what the letters CFS stand for!!

    Hang in there as best you can as Nancy Klimas has suggested.

    Take care,

    Maxine
  7. calzy

    calzy Senior Member

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    I am laughing out loud...certainly not at our suffering but how Dr. cheney can drive one crazy and broke! He was my Doc for many years and bless his "new" heart...but, I think he would do best in a lab.
  8. Cheney was the first CFIDS doc I discovered and whose work I have followed since 1993. And while I am not his patient, I do believe he is one of the brighter people we have working for us. I know that I cannot take Omega 3's, nor CoQ10, nor that megaexpensive whey powder that I have sitting in the pantry. I cannot take B-12 in other than micro doses. This was all evident to me long before Cheney changed his mind about protocol.

    We may fall into varying degrees or expressions of this illness. I find many who are on the same page as I am. But there are an equally large group who do just fine on things my body cannot tolerate. Case in point: Dr. Patricia Salvato's glutathione/ATP injections infused me head to toe with liquid fire. It was so bad that I refused another injection, and I can DO some pain.

    I trust Cheney even when he gets it wrong because I like his back to the drawing board approach. I have immense respect for ANY doctor who can say: " I was wrong." "I don't know" and "I am sorry". That is a man among men and emphatically a doctor who stands head and shoulders among others, IMHO.

    Go Cheney!!!
  9. Sing

    Sing Senior Member

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    Yay, Bluebird! I really appreciated your statements about Cheney as well as about how your experiences with those protocols differs. Please help keep us all informed about Cheney's work and views--

    Thank you,

    Sing
  10. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi Bluebird & Calzy,

    Bluebird, I agree that we do fall into major differences about protocols might or might not help us. And Calzy, I am sorry that you have had to spend so much money and not get the help that you needed. I do think that Cheney has our best interests at heart, but laying out that much money which for many of us is not replaceable, is beyond frustrating. I don't know how to say this Calzy, but I am so grateful that people like you (by seeing Cheney), who have contributed to the overall knowledge of this ridiculous disease. But it sucks big time that your outlay of money has not brought more relief to you!!! I have myself dumped money into appointments/test with Dr. Lerner and Dr. Salvato. I only saw Salvato once, and was so unhappy with my appointment that I never went back. We were in a discussion of going over several sheets of test results when she was called away by someone in her office. I waited and waited and waited and she never came back. I finally went to the desk where they told me that my appointment was over. Before she left our discussion, she did manage to give me a prescription for T3.

    In any case, I am hoping, like everyone else that the XMRV discovery will lead to better treatment for all us, and am hoping that it won't cost every last cent we have to improve our health!!

    Take care,

    Maxine
  11. BEG

    BEG Senior Member

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    I certainly can agree with this! I look at my box of supplements and canister of di-ribose and see dollar signs. The odd thing is that I felt they were helpful. Now I believe it must have been wishful thinking.

    What is Dr. Cheney's current view on L-Carnitine?
  12. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi BEG,

    Yep, unfortunately many of us have supplements, etc. that we can no longer take. However, if you felt that the things you were taking were helpful maybe you should continue with them? I don't think any one person has all the answers (OK, this is an understatement :() Maybe you shouldn't discount what your body was telling you? I loved the way I felt when I took D-ribose - more energy than since I have been ill (1991), but the resulting stomach pain was just too much to deal with.

    I do not know Dr. Cheney's current view on L-Carnitine - hopefully someone else out there will know?

    I have recently made some improvements by being on some of the things that Cheney currently recommends. I was able to take a short 15 min. walk in the woods today - it's the first time I have been to take "a walk" since the end of August when I hit a major crash.

    What might be helping: magnesium glycinate, inosine, artesunate.

    Good Luck,

    Maxine
  13. juniemarie

    juniemarie Senior Member

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    Where is Cort's original post about Cheney's new findings.
  14. anne_likes_red

    anne_likes_red Senior Member

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    It's in his article on the Home page - "Looking back at 2009". :Retro smile:
  15. harry

    harry

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    Dr. Cheney does not change his mind willy-nilly or on a whim. Everyone should remember he's not just a doctor, but also a scientist looking for a way to moderate/and or a cure for CFS.
    He doesn't think in terms of what popular opiinion of him is, but what will give his patients the most relief from symptions.

    He has requested that patients not repeat what his protocol is because getting bits and piedces of it doesn't do a non-patient much good, which I can understand because I always feel worse when I get busy and don't stick closely to the protocol.

    Dr. Cheney is a brilliant and caring man. His own moral standards would not allow him to keep patients on something which he felt was not helping them. I applaud him for this, since I've been to doctors for other ailments and found many seem to still be guided by what they learned in med school.
  16. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I am not a follower of Cheney, just my CFS doctor. I am also on the Dzugan program. I take a lot of great supplements and they have been amazing. You have to have the right blood tests (follow up blood tests also ) and supplements, doctors etc. Every person is different, so we all need different supplements and in different amounts.

    I am on a schedule each day, three times a day, taking my supplements at the right dose. You need to have a doctor that helps you with it, taking a little once in a while is harder to get results from, at least in my case. Our bodies each need different things.

    The Dribose, CoQ10, Carniclear, Lipoic Acid, Andrecor, etc, were really needed in my case. I have CFS and POTS, so there is a lot to deal with.
  17. Sing

    Sing Senior Member

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    Cost to see Cheney?

    My sense is that if I could choose any doctor, it would be Cheney. Does anyone know what he costs? Not just initial costs but continuing ones?

    Thanks,

    Sing
  18. Andrew

    Andrew Senior Member

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    Please post a link.
  19. Enid

    Enid Senior Member

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    Quite agree Dr Cheney one of the best. The trouble seems to be (from 10 years now but walking) different supplements seem to aid (or not) at differing stages. I've been on and off so many as tolerated or advised may aid - it's quite individual.
  20. kday

    kday Senior Member

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    I don't agree with Cheney's echo terrain maps.

    He seems to be the only one using it, and there is no medical journals or real publications about it. I think it may work for some things, but I don't think it always work in evaluating substances/supplements.

    I hold this opinion because I totally disagree on his view of methylation protocols. They are extremely helpful to me.

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