Is anyone seeing Dr. Cheney.

Discussion in 'Fibromyalgia Main Forum' started by browneyelady48, May 11, 2005.

  1. browneyelady48

    browneyelady48 New Member

    I would love to try to make an appointment with Dr Cheney, does anyone know if he is seeing new patience? If so how do I contact him.
    I am so tried of getting the run around here with Dr.
    Love Brenda
  2. foxglove9922

    foxglove9922 New Member

    Good question, hopefully someone can come along with some advise. I am very interested in what he will have to say at the 6/18 conference.
  3. turquoise

    turquoise Member

    As far as I know, Dr. Cheney is NO relation whatsoever to Dick Cheney. He was one of the first CFS researchers to treat patients, and devised a lot of the more common treatments around today. At one point he had to take early retirement for serious health problems, but is supposedly now seeing patients again. I have never seen him myself.
  4. lbconstable

    lbconstable New Member

    Dr. Cheney has had heart surgery awhile back. I don't think he's been seeing new patients.

    He's been woring on CFIDS though. Looking at the association between CFS and a heart problem. He thinks the heart may not be pumping enough blood volume.

    I found a couple of articles (it's the info he will be submitting at the upcoming conference in June)on another CFIDS website by searching "Cheney" & "Chronic Fatigue." Very, very intriguing!

    Love & light, Laurie
  5. browneyelady48

    browneyelady48 New Member

    I will try to do some research on the net. But I just got back from a 6 week visit with my daughter and new granddaughter and my body is so tried and stressed out, and I dont understand why stress and overdoing it can make me feel like I am honestly dieing.

    It makes since about the blood flow, because I have been saying for years that something is wrong with my heart. And all that shows up on testing is always adnormal ekg t-waves.

    Also adnormal mri of the brain and decreased blood flow to the brain.

    I am just having a really bad day and pain I can take but I cant take it when I feel my brain isnt working.
    Love Brenda
  6. Mikie

    Mikie Moderator

    And do a search on Cheney and it will bring up three pages of his articles.

    Love, Mikie
  7. jarjar

    jarjar New Member

    Dr. Cheney,
    Is for the wealthy if he is accepting new patients you can contact his office and they will let you know what to expect to pay for office expenses. They sent me an info pack a couple of years ago, they do not work with
    insurance and back then it was $600.00 an hour plus very
    expensive medical testing. I'm wanting to say back then it was going to run into at least 6,000.00. So if money is no object he is your man.


  8. freshair

    freshair New Member

    What all of you are saying is what the study is showing, that we dont have enough blood volume or mass, the study is saying that 50-70% of us have this problem. I did the study and i fit right in with what they were looking for. That is why my cardiologist could never figure out why my heart beat so fast and nothing showed up wrong,,,,,,,but there was,,a normal person has about 5 liters of blood, i had less. I stopped the treatment and now i am short 25% of blood mass and 33% of volume. A lot of people here talk about being dizzy, this could be thte problem, it shows up on a tilt table test and with a blood volume test (nuclear test) have to find a hospital that does the test and can get the isotope needed. The test runs about 2,000 i think i had to pay 125 of that to the hospital. Medicare covers the procedure.
    I just found out that i have a genetic defect that makes my blood thicker,,,,another theory of cfids. it is a dna test. It would be nice if president bush could give us a hand with some money for research,,,,,,,fat chance!
  9. lbconstable

    lbconstable New Member

    Hi Brenda,

    Congratulations on the new grandbaby!

    The article I came across was at the CFIDS & FMS Support Group of DFW website. The article is called "The Heart of the Matter:CFS & Cardiac Issues." It's quite long (35 pages). In the article he discusses the progression of systems that are compromised with CFIDS/FM and how that relates to the cardiac issues.

    He now sees CFIDS as the bodies way of protecting us from cardiac arrest. It was a very interesting spin. He also outlines the progression of bodily systems recovery that will likely occur as the body heals.

    The article is new (dated 4/05). I didn't find this one in the library here, yet. But I'm sure it will make it's way here soon.

    Rest Easy!, Laurie
    [This Message was Edited on 05/12/2005]
  10. cerise

    cerise New Member

    I came in on the tail end of the Lake Tahoe initial cluster outbreak being diagnosed initially in 1987 in Reno, NV. Having spent many previous winters at Incline (North Shore Lake Tahoe) I can attest to the fierce battle that both Doctors Cheney and Petersen went through after Dr. Cheney made his initial report of the cluster outbreak to CDC. Lake Tahoe did not take kindly to the outbreak orthe doctors because tourism is their #1 industry.

    Dr. Cheney recently had open heart surgery and has sucessfully recovered. He is back on the lecture circuit. There is a website that follows most of his research (I believe) and the Dallas Ft.Worth CFS Support Group has current information and articles by Dr. Cheney regarding his continuing research. They are also sponsoring a lecture in which Dr. Cheney is the guest speaker. They stated they plan to publish the lecture in their upcoming newsletters available on-line.

    Dr. Petersen, Dr. Cheney's senior partner at Incline Village is still practicing medicine in Incline.

    At the same time of the outbreak in Lake Tahoe, Northern Nevada and California communities, a similar outbreak was occuring in Lydonville, New York (upstate). Dr. David Bell was the clinician and he, too, has become a leading researcher and authority on CFS. He has an excellent on-line newsletter that is very informative.

    Sadly, to this date, I have been seen by doctors who have had no qualms in telling me that these doctors are all quacks looking to make a buck, and that CFS is just nervous exhaustion, menopause, or all your in head.
  11. foxglove9922

    foxglove9922 New Member

    Does anyone know where his office is located. $600 an hour is not bad. Dr. Tietlebaum gets $5,800 for a first consultation.

    Anyone know what state he practices in or the location?
  12. labster

    labster New Member

    Dr. Cheney is seeing patients again in Ashville, N.C. His number is 1-828-274-6665
  13. tatortot

    tatortot New Member

    I have seen Dr. Cheney twice. Followed his protocal and everything. I'm not a bit better today and a whole lot poorer... He has a terrific mind and has obviously spent his life trying to figure CFIDS out. I begged him to give me Ampligen but wouldn't because he didn't want me to start it and then have to give it up.

    He sent me so many tests to have and send in! I was too sick to do them until months after the visit.

    When he was sick with his heart there was a web site for well-wishers to send him notes. After reading dozens and dozens only one person mentioned him having helped her!
    Go figure.

    Keep your money(I felt like I was in the presence of God, I was that glad to finally see him)

  14. cerise

    cerise New Member

    If you find a doctor that actually makes you feel better physically for any length time, please let me know!!!
    The best an internist or even a CFS Specialist can do for their patients right now, is a correct diagnosis, accurate info and prognosis, and help try to find some type of treatment that may relieve their symptoms and illness the co-exist with CFIDS.

    Were you able to find another doctor that helped you with your CFS after seeing Dr. Cheney?

    Personally I don't know what kind of clinician Dr.Cheney is, but I can attest to what he has done in the name of CFIDS and bringing it to light. My hat's off to anyone in the medical community who didn't roll over at CDC demand and remembered their patients and the welfare of their community comes first when there is an outbreak of any size among their patients.

    It was NOT Dr. Cheney that named (or renamed) CFS using the word "fatigue" in the name, but rather CDC and to date Dr. Cheney has made his position clear on that matter, to our benefit.

    Some doctors are better suited behind the microscope and in this day and age of HMO's, bedside manners are a thing of the past. I'm just happy when a doctor doesn't try to talk me out of believing I have CFS or telling me they STILL don't believe it's a credible illness until medical science comes up with a valid test for it!

    If you get chance, you might want to read the book OSLER'S WEB BY HILLARY JOHNSON - a journalist with CFS who wrote about the history of CFS in the US dating back to the early 1980's.
  15. browneyelady48

    browneyelady48 New Member

    I think its sad that there is a cost put on our health. This country does so much for other countries when we need to be doing more for our own U.S.A.

    I know something is wrong with my heart, but getting a Dr. to understanding and find out is another thing. I am to the point of giving up.

    Even when I had my accident a year ago, and out of it for a week, I was in ICU for 4 days because of my heart.

    The only thing that I know of that is showing adnormal is EKG t-waves, adnormal mra of the brain (Blood Flow) and adnormal mri of the brain with punctures and leisions.

    I really beleive its my heart that is messing up my brain. I got real sick in 93 and use to have TIA (mini strokes) but havent had one in about 4 years now.

    I apreciate all the response and will read the recommened sites when I am able. I have an appt next week with my neurologist and I am hoping she will listen. What test can anyone recommend. Thanks

    Love Brenda
  16. browneyelady48

    browneyelady48 New Member

    Thanks for your help. Can you give me any suggestions as how to approach a dr with this, without being thrown out as being crazy.

    I just got back from a trip for 6 weeks with my daughter and new grandbaby and my body is really run down.

    Any help you can give me would be greatly appreciated. All this affects my mind and thinking and I will go read the websites when I think I can understand.

    Again Thanks, Love Brenda
  17. cerise

    cerise New Member


    If it hadn't been for Dr. Cheney a lot of us would probably be sitting in a padded room somewhere medicated out of our mind!

    I will never forget when I got a real diagnosis (other then depression, PMS, flu, chronic mono, etc. )was given to what I had & made it real and legitimate. It made all the difference in the world. Then I was able to start learning about CFS thanks to Dr. Cheney & Dr. Bell and others and I didn't feel alone & it was wonderful to read I wasn't insane & others were experiencing the same symptoms. The were not separate ailments, there was a reason. Well that was in 1987.......Dr. Cheney's still trying to find out what causes this crap.

    On another note, I love the order you list your husband among your pets!!!!!

  18. Mikie

    Mikie Moderator

    He nearly went bankrupt when he was spending most all of his time advocating for CFIDS at the CDC and NIH. I think he is entitled to charge whatever people are willing to pay. His office sent me a patient pack and told me to expect to spend close to $6,000 by the time I was through. Insurance may help pay part of the costs and his office will help with insurance.

    It was my understanding that he was not accepting new patients when he got sick with heart problems.

    I decided not to spend the time and money traveling to see him (that was before he got sick). I have only heard of one person who was his patient who felt she was healed. I don't expect any doc to be able to heal me as CFIDS is one of the most confounding and comples illnesses I have ever encountered.

    Instead, I have read his articles, along with other docs', and my own docs and I have applied those things which seem reasonable in my case. I am better but not well. It has taken close to four years of research and trial and error to try to claw my way back to decent health. I continue to read but have not kept up the frantic pace of research.

    BTW, the outbreak at Incline Village wasn't the first cluster outbreak. There was one up the coast from me at Punta Gorda (yes, the same small town literally torn apart by Hurricane Charley last year) back in the 1950's. This was after the govt. came in and sprayed something, telling the town that it was necessary for mosquito problems. Yeah, right!

    Love, Mikie
  19. cerise

    cerise New Member

    I keep reading more & more about cluster outbreaks in the 1950's and then it seems to skip to late 1970's early 80's. But there does seem to be a cross-country cluster outbreak of CFS in the early 80's. There also seems to be a predominance in certain professions that are affected by CFS and Fibro also, such as nursing and teaching fields.

    Humor, it seems that people affected with this DD realize it's importance however we are the only ones that seem to not only get, but appreciate our own humor! Funny, nobody in the real world finds me amusing at all!
  20. simonedb

    simonedb Member

    what do you think thy sprayed in that town?
    (after reading the 'plutonium files' I realised they would do anything even to their own citizens)