Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Want any information on patients that have seen Dr. Cheney in 2011-12.

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

  1. SanDiego#1

    SanDiego#1 SanDiego#1

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    I saw Dr. Cheney a few months ago and was diagnosed with Cardiac Diostolic dysfunction. Has anyone else been to see him in 2011-12? None of my Cardiologists agree with him. Don't know where to go from here.
    Thanks for any input from any of his patients.

    SanDiego#1
     
    AFCFS likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi SanDiego,

    Didn't Dr. Cheney prescribe a course of treatment for you? Seems like you have invested so much in seeing him and being tested, that this would be the next step?

    Some other cardiologists DO agree that diastolic dysfunction is a problem for some of us, but they approach treatment differently.

    Best wishes,
    Sushi
     
    merylg, alwayshopeful and AFCFS like this.
  3. SanDiego#1

    SanDiego#1 SanDiego#1

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    Sushi- Thanks for your reply. Don't know whether you have seen Dr. Cheney or not. He prescribed a Core treatment for me. I am not getting better. This was 6 mo ago. I had to find someone here and went to 3 different Cardiologists.
    All 3 have said his tests are flawed. All 3 saw tests results. They did not know each other.
    You better believe I invested a lot in seeing him. I had to ask for Blood tests to be done and still have not had diag on blood. These were done after my initial visit with Echo. Took 3 months to get anything in writing..I was a patient of his years ago. Things have changed!!!!
     
    AFCFS likes this.
  4. Nielk

    Nielk

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    Hi Sandiego,

    I'm sorry to hear about the difficulty you are having as a follow up. I am not a patient of Dr. Cheney but, I have heard that there is a forum for Dr. Cheney's patients/ i'm not sure if this is true or where it is. Maybe someone can clarify this?
     
    merylg and AFCFS like this.
  5. AFCFS

    AFCFS Senior Member

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    Hi SanDiego,

    I have not seen Dr. Cheney. I can tell you I do NOT agree with Dr. Paul Cheney Discusses the Benefits of Klonopin. Having been on Klonopin for about 25+ years and now slowly - slowly coming off of it, and being Dx'd with CFS while on it, I see no need to be exuberant about its use. Why not Lamotrigine if concerned about seizures/seizure related states, or one of the many other anti-seizure meds that are not addictive/habit forming (depending on who you talk to about addictive vs habit forming). Just sends up a red flag for me.

    But more to your point, if I were having Cardiac issues, I would see a cardiologist and if not 100% satisfied with one, get a 2nd opinion from another, etc. Not sure if you are using Cheney as a primary? I have heard some good things about Dr Flechas (M.D., M.P.H) in Hendersonville, just a short way from Asheville. He advertizes as an Integrative Internist. I think much of the CFS treatment comes down to managing your doctors, questioning everything, and not being afraid to move on or around when one doctor does not have all your answers.
     
    merylg likes this.
  6. AFCFS

    AFCFS Senior Member

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    Maybe here - a Phoenix Rising Forum: Dr. Paul Cheney's current theory?

    May also want to just do a Google search for Dr. Paul Cheney forum and see what others think. I came across Got Money? 10 patients, 10 treatments, 10 grand and was not encouraged.
     
    SanDiego#1 likes this.
  7. SanDiego#1

    SanDiego#1 SanDiego#1

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    Dear AFCFS- Seeing other Cardiologist is exactly what I am doing. He has me afraid to even have a minor surgical procedure done with Anesthesia. All of the Cardiologist expressed to me that the machine he used is out of date.
    I am having another ECHO in 2 weeks.These are not Chronic Fatigue Doctors and they had no reason to lie to me.I actually took my Echo report and Disc into them and they all had a hard time finding a machine a that would open it He does not take insurance. All payment is up front.I felt at the time he was the way to go as I have a reaction to most drugs. He did try me on Klonopin. I took for 2 days and took me a week to get off of it even on a minimal dosage. It did not help me sleep. I have had CMV, EBV possible POTS for 20 years . Until a year and half ago, I was walking , exercising, running a business . Had to stop business. No exercising now Very unsure of my treatment there.One size fits all does not work for Chronic Fatigue.. Thank you for your input . I will try to find the forum. However this site is the most informed one and the most educated in different Physicians..I am sure there are patients here that have used him- Does everyone that goes there now wind up being diagnosed with Diastolic Dysfunction???
    Thank you again.

    San Diego
     
    AFCFS likes this.

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