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Can You Come for a Visit? My ME/CFS Says No
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Anyone on this site a patient of Dr. Paul Cheney in Ashville, NC?

Discussion in 'ME/CFS Doctors' started by SanDiego#1, Nov 15, 2012.

  1. SanDiego#1

    SanDiego#1 SanDiego#1

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    Saw Dr. Cheney a few months ago. Did Echo on me said, I had Diastolic Dysfunction.
    My 3 Cardiologist disagree.Anyone had treatment here that helped?Need help!!

    San Diego#1
    AFCFS likes this.
  2. Nielk

    Nielk

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    It seems like Dr. Cheney's patients like to keep quiet or is it possible that no one on this forum has ever seen him?
    AFCFS likes this.
  3. SanDiego#1

    SanDiego#1 SanDiego#1

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    Would really like to hear from patients or former patients as to whether they have improved.Just need some feedback.
    Thanks SanDiego
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    SanDiego#1

    Very few of Dr. Cheney's patients post on this forum. I believe they have their own forums and newsletters.

    Best wishes,
    Sushi
    AFCFS likes this.
  5. lnester7

    lnester7 Seven

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    I second the question, I am thinking about it because he is located closer to me. But the secrecy has not make me comfortable so far.
    AFCFS and SanDiego#1 like this.
  6. SanDiego#1

    SanDiego#1 SanDiego#1

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    AFCFS and lnester7 like this.
  7. lnester7

    lnester7 Seven

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    TX!!! keep the good info flowing!
    AFCFS likes this.
  8. SanDiego#1

    SanDiego#1 SanDiego#1

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    Hi Sushi-
    I sent you many replies on Conversations, forums and threads. Did you get any? Go to conversations!!

    Thanks,

    SanDiego
    AFCFS likes this.
  9. AFCFS

    AFCFS Senior Member

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    This is from Cort - Dr Paul Cheney - Asheville, North Carolina
    And here are links to online reviews:
    RateMds.com: Dr. Paul R. Cheney
    Vitals.com: Paul R Cheney JR., MD

    I think it is extremely odd that a person, apparently in practice for 31 years, and apparently on the forefront of CFS clinical treatment, and who charges like this:
    And who has seen this number of patients (from his website):

    Since 1990, Dr. Cheney has headed the Cheney Clinic, now located in Asheville, NC after over ten years in Charlotte, NC. The Cheney Clinic has evaluated over 8,000 patients from 48 states and 24 foreign countries and participated in an FDA-approved multi-center pharmaceutical drug trial using Ampligen, a biological response modifier.

    does not have more reviews.

    Of course there are the Testimonials on his website - take from that what you may.

    He gives a brief blurb and is mentioned a few times on this video (not bad for 1996): CFS and the CDC's Failure to Respond: Primetime Live (1996)


    - Just wonder if maybe patients have to sign a non-disclosure type agreement as part of the package?
    SanDiego#1 likes this.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi SD,

    I got one Conversation that you began, (and I replied) but have received no others! I have checked all my Conversations.

    Something isn't working! I have also sent you several conversations--did you get the one where I asked if you were using an IPAD or phone? Cause I'm not sure chat works with them.

    Best,
    Sushi
  11. Lynn

    Lynn Senior Member

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    SanDiego#1 and AFCFS like this.
  12. Lynn

    Lynn Senior Member

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    I was a patient of Dr. Cheney's for about 5 years. I was also diagnosed with diastolic dysfunction. My take is that there are currently no real remedies to help that. Dr. Cheney is very expensive, but in my opinion, he doesn't have any better answers for this illness than many other doctors. He was very good at documenting disability for those that need that.
    If I had the money, I would go to San Francisco and see Dr. Kogelnik to see if I could get on Rituximab. Just my opinion.

    Hope that helps.





    Lynn
    Izola, MishMash and AFCFS like this.
  13. ukxmrv

    ukxmrv Senior Member

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    I think that it is important to point out the very personal attacks on Dr Cheney (and Dr Peterson) in the early CFS days. Osler's Web captures that very well.

    Also given that he had a heart problem (and I think a transplant) a few years back then we simply don't know how long he will have left to treat PWCFS.

    Many of the simple things I do came from his treatment of CFS patients early on. He was doing testing for glutathione before the lovely Rich VKB developed an interest in CFS.

    I know of several patients of his who have done very well. It's well out of my price range of course and if I had the money I'd probably be going for the Rituximab option (as per Lynn).

    Yes, it would be great if we have a Carol Sieverling now who would tell us all his current treatments and thoughts.

    Dr Cheney will have a reason for keeping a quiet public profile and I don't think is it about money. On a personal note he has been kind to me over the decades with no money involved.
    Izola, silicon, merylg and 1 other person like this.
  14. SanDiego#1

    SanDiego#1 SanDiego#1

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    Not about money???You have got to be kidding. My thoughts are I have to have an answer to what I have other than CMV,EBV and possible Dias Dys. POTS I don't want to have to start all over again. I don't have the energy to do that.
    Everything there is a MYSTERY. Don't contact him.He doesn't do blood draw? When asked about blood work, "Nothing
    unexpected was found?? From Receptionist. I think his interest is in Research, which he is good at. However, just found out I have a running bill till my next OV. I told them to send it now so I can deduct from income tax for this year. No response. I am too sick to go back for an office visit. Probably to do another ECHO??
    I think in the near future patients will only go one time when they see what the setup is and what the fee is. I really felt
    last time the main thing was selling me his Neutralizing water machine, that he and another Dr. invented. . I did not sign a nondisclosure agreement. Alot of his treatments are the same as 10 years ago. Other than the Neutraceutricals which are almost $200.00 for a small bottle.The AM one does seem to give me more energy. I have been on a Gluten free diet for 3 years -Rec by a Gastroenterologist in the South-not Cheney.
    I do not understand the statement "Dr Cheney will have a reason for keeping quiet" statement.

    Thanks to everyone for your input.
    SanDi
    Lynn- NO ONE WILL QUESTION THE MOTIVES OF THE CHICKEN CROSSING THE ROAD-UNLESS HE IS CHARGING 1200.00 TO DO IT!!!!!
    SanDiego
    ego

    Hi Sushi- Yes I did get one about I Pad. No I am using computer Comcast only. Not having problem with any others.
    Hope everyone understands I am not critical of anyone. Just need answers and after months and alot of money. Can't get any other than spending more money for what I feel I have already paid for.
  15. SanDiego#1

    SanDiego#1 SanDiego#1

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    Thank you Cort. Your E-mail was a breath of fresh air. I will look at all info you sent.
    Thank
  16. SanDiego#1

    SanDiego#1 SanDiego#1

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    Forgot to thank AFCFS.- Sorry."

    Dr. Cheney is going to be out of country from Nov19,-Jan 3 2012.

    SanDiego
  17. ukxmrv

    ukxmrv Senior Member

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    SanDiego,

    If you knew more about his history (have you read Osler's Web) then maybe you would explain my comment about it maybe not being all about the money and about being quiet.

    I don't think that any of the doctors currently treating ME and CFS have all the answers or anywhere near all the answers. Personally I have spent many thousands on treatments, tests, doctors appointments with very mixed results.

    Even our patients on this forum taking Rituximab are reporting mixed results. Wouldn't stop me trying this if I had the funds but at the end of the day this could just be more money down the drain.

    If we have concerns about money (and I think we all do) the best thing is to do is to investigated the doctor, talk to his patients and then make an informed choice.

    Dr Cheney has a long waiting list. If you doesn't provide what you need then don't see him. If you don't know what he provides then talk to his patients. Canvess them and cultivate them when you find them.

    He doesn't need to provide reviews, testimonials if he doesn't want to work that way.Dr Cheney doesn't pretend to have the answers. Unless we research all the docs we see them we risk throwing more and more money away. I know for example that I cannot afford to see him, cannot travel that distance, cannot afford the treatments he would offer. It's the same for most of them though isn't it.

    Yes, it's painful spending all our money and hopes on doctors. Story of most of our lives. Should be better than this. Should be proper treatments with proven results, Doesn't exist.
    beaker likes this.
  18. MishMash

    MishMash *****

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    I had an appointment to see Cheney when he was located on Bald Head Island, North Carolina. That was back in the late 90s, when he was really started to get a lot of attention, and patients were flocking to him. To get to the island everybody had to take a ferry. What nonsense for a CFS doctor. No respect for patients who could barely walk, much less tolerate a ferry ride.

    Anyway, back then his office had a "no refunds under any circumstances" policy. I had an appointment scheduled and they some how screwed up and double booked the time. The next available slot was not for 9 months. I asked them to cancel my appointment and refund my money, as his confused, incompetent wife/ office manager obviously screwed up the scheduling.

    It came down to a very tense conversation on the phone where I was told I would not be getting my money under any circumstances. I sent a registered letter to his dingleberry wife, telling her I was preparing to file a small-claims lawsuit against his practice and that I had all necesssary documentation to support my claim. A week later I got my check in the mail.

    My advice is don't deal with this practice. This doctor has no ideas, and he obviously makes up things, intentional or unintentionally, that have no possible basis in reality. In the early 2000s he had a proprietary stem-cell therapy he was supposedly doing. That has apparently been replaced by another paradigm. The last time I looked his cash-only fee was $10,000 for the first day's consult !! If I remember from his website, he justifies it by saying he is effectively giving you many appointments, just all in one day.

    I have seen Bell and Klimas. Other than some interesting test results showing probable basis for illness, I didn't get anything out of either visit. I decided a few years ago that these CFS all-star docs are not really to be relied on for very much. Mostly they will tell you to take supplements or offer you antibiotics (like no one ever thought of that one before).

    Congrats to Kogelnik for actually trying out Rituximab on CFS patients. My hope is that time marches on, and new more earnest and helpful docs step in to take treatment of CFS to new areas. I'm certain if any establish themselves as compelling, they can basically name their price; because we are so desperate. We need some new blood in this area.
    SanDiego#1 likes this.
  19. SanDiego#1

    SanDiego#1 SanDiego#1

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  20. SanDiego#1

    SanDiego#1 SanDiego#1

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    I have been a patient of Dr. Cheney's for over 10 years. Haven't been back in a few as I was doing well. Not necessarily from his treatment. I know all about him. Including his family, Mother Father, Sister who lived close to me. Things have definitely changed. I do think he is Brilliant-though none of his treatments have changed. Once you have paid your fee and made your visit. That is it. No feedback. Please don't lecture on knowing your Dr. before you go. He does need to provide reviews, Testimonials for that type of money!!!Contrary to what you said about a waiting list. Not any more. They are actually canvassing for patients. A lot are not going back a second time.UNLESS YOU HAVE BEEN THERE
    DON'T DEFEND HIM!!!!!

    Stay Well,

    San Diego

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