Dr Cheney - any patients?

Discussion in 'Fibromyalgia Main Forum' started by SpecialK82, Feb 15, 2009.

  1. SpecialK82

    SpecialK82 New Member

    Anyone seeing Dr Cheney currently or in the recent past?

    I'm very interested in his latest protocals and would love to hear any feedback from patients.

    It's so expensive to go ($7,000 - $9,000 for the first two-day visit) that I really would like to hear a lot more before I think about spending that kind of money.

    Thanks in advance,

    [This Message was Edited on 02/15/2009]
  2. SolSerenade

    SolSerenade New Member

    I live near his office and have inquired about a appointment -- but have the exact same reservation, or hesitancy ... because of the cost.

    it just makes me wonder, WHAT in the world is he doing, that it would be that expensive for a 'first visit'?
  3. kat0465

    kat0465 New Member

    now dont get me wrong, i've read some of his papers on cfs/fibro. and they make sense. But you can't tell me what he does in 2 days warrants him charging that much money!!! as someone who has had a terrible illness himself, you think he would be a little more compassionate,sounds to me like hes trying to make money off very sick people!!!! guess he forgot what it felt like to be severly ill.i mean most of us are not working because we CANT! and even if your fortunate enough to have adequate medical insurance, your still in debt from copays, & such.i need tests right now and cant afford them, and i have insurance. i'd give my left arm to be well again!!why don't they understand how much were suffering?
    [This Message was Edited on 02/15/2009]
  4. Sophiaz

    Sophiaz New Member

    i wanted to post what you did but was afraid being new here but I am OUTRAGED at "Cheney's Charges". He was doing this back in 1990- (I was going to a support group before we realized my "exhaustion" was dysautonomia based and life long, upon examination)

    $2000 for AN OFFICE visit back then. THE END.

    NO offense but docs that cater to the wealthy make me ill. I saw Dr. Cheney speak at Wright Patterson AFB back then also and he told me nothing new in person than his articles. STILL I appreciated his time in the illness but Mercy! Has he no compassion?

    Not to brag but my annual income is under $9,000. So I guess I am not "supposed to have access to specialist". Thank GOD the autonomic docs accept insurance and do not practice PRICE GOUGING. Yikes.

    But in all honesty, it's not just Cheney, many experts charge OUTRAGEOUS fees and then often times will not even ACCEPT INSURANCE ANYMORE. Cash out of pocket.

    Oh, and if HE had the answer the WORLD would be hearing about it..like that other guy..from the West Coast years ago (name escapes me but he also had articles in the CFIDS Chronicle in the early 90's) that doc gave you TONS of meds on the first office visit to see what worked. and what made you worse..it was an all day event of sitting in an office to watch drug reactions. He was reasonable and when i called him YEARS ago they accepted Medicare. I doctor from Toronto sent me his medicine protocol but it was hair raising.

    Anyway, Cheney had a heart transplant correct so he still does not "get it". :(

    That West Coast doc back in the day was a HOT PROPERTY.

    And I am not going to be able to sleep until I find his name...sigh.

    anyway, no offense to those that can afford Dr. C but I would TRULY question a lot of things, but hey, that's me.

    Rant over
    (sophia slamming the door behind her as she leaves, but not at the helpful folks here!! ) ;-)
    [This Message was Edited on 02/15/2009]

    P.S. Dr. Jay A. Goldstein was the doctor with medical protocol. Retired in 2003!
    [This Message was Edited on 02/15/2009]
  5. kat0465

    kat0465 New Member

    i figured i would make someone mad, but couldnt help it!!! it's rediculous. years ago when i was first diagnosed, there was a Dr. in my area that claimed to be a cfids specialist. he was really an allergy doc. but he was claiming this IV protocol he was doing was helping people, it was albumin or something like that, he was charging 1500.00 a pop, let me tell you he had people lined up hooked up to IV's and of course he was charging out the wazoo for allergy testing first off.Ins wouldnt even pay for the iv treatments cause it was expieremental.thats when i left that doc & found salvato in houston, when i told her what he was doing & what he was charging, her Jaw hit the floor, she told me that albumin was tested & found not to help at all!!! she said " how are these people paying for that even!" and like i told her, when your that sick you'll do whatever you have to to get well, and those Dr's know it!! I'm not saying Cheny is doing something thats obviously crooked,but 7 to 9 THOUSAND DOLLARS!! for the first visit!!the sad part is, people that truly think it can help will do whatever they can to pay all that. and for what? were all still sick, as far as i know.If he had the magic bullet, or whatever i think we'd be hearing a lot more about it!!But like you said, Hey i guess if you can pay, and you trust him. More power to the person. i hope he's at least making these people better.
  6. ladybugmandy

    ladybugmandy Member

    i guess if a doctor can get enough rich people in his practice, why not charge a lot? not fair for us but i guess they can reason that rich people are just as valuable as poor people.....so why not help them?
  7. Sophiaz

    Sophiaz New Member


    Goldstein, though some considered radical was DOING SOMETHING for all pts at an affordable fee.

    He practiced the art of trying to help EVERYBODY who came to his office, not just the ones with big bank accounts.

    Back when I saw Cheney at Wright Pat he compared CFS to HIV..and the comparisons in the brains or something...I forget, been years..
    Some doctors get the 'god' complex unfortunately and folks feed it.

    I am glad to read of somebody who say Goldstein.:) Sorry his retirement was untimely for you.

    Then again many researchers in autonomic clinics argue their way is 'the only way' thus clashing egos never get the bigger picture. That all places help some patients a little tho some patients with Dysautonomia don't get better and some forms are fatal (i.e. Shy-Drager) But rather than 'share' autonomic research and studies, it's like converting different docs to different religions!! *sigh* thus here we all sit.

  8. SpecialK82

    SpecialK82 New Member

    I just talked with his office today (new potential patients have to leave a number and they call you back - it took a week).

    Anyway, the first visit price includes a physical, an echo, and treatment. They said you are there for 8 hours the first day and about 4 hours the second day.

    I was surprised to hear that you don't have another visit for a year. I guess he gives you the treatment (not sure if it lasts for a year) and sends you on your way.

    Apparently, any other time you need to talk with him it's done on the phone and if he wants any labs, he has it done in your hometown.

    So I'm a bit surprised - it would seem that he would need to take bloodtests periodically or at least get feedback so that the treatment can be modified as needed.

    Also - what do you think would take 12 hours in his office? I can't imagine.

    I asked if they have any statistics on improvement with his treatment, and she said "no". She said the patients they see are very sick and thus are not representative of the general CFS population.

    That made me think that maybe they aren't having great success with their current patients. I don't know what to think - I like some of his theories, but I can't seem to get much info - or find anyone that he has helped.

  9. simonedb

    simonedb Member

    there are actually some similiarities between the 2, are u questioning tht?
    if You read teh book Osler's web it explains it.
    they both came about same time and unfortunately aids overshadowed cfs, i mean great for aids folks but not good for us, we got marginalized, the money and glory went to hiv. its in the book. cfs not fatal at as young an age usually as hiv, can be, but not common, aids you lose wt.cfs u often gain. aids often males cfs more female, not always but probly stats support, was more so in 80s perhaps. the book had some very interesting comparisons and the dirt on the researchers at the time and some of why it went down like it did.

    regarding cheney, i dont know if any of the docs brag a high cure rate, sort of nature of the beast at this point in the game. he is very respectful for his clients and has tried to help out politically over the years. he does see some patients more than once a year, its individual and what one can afford. his own heart issue ties into cfs and he has some intriguing info that explains how diastolic issues tie in. it manifests differently in dif people, just like hiv can.
  10. SpecialK82

    SpecialK82 New Member

    Vicki007 -

    thanks so much for your thorough reply! I have been on the fence about him, thank you in helping me decide not to see him. I have also been a little put off by the effort it takes to get any info out of the office. If they are trying to get people to spend $7,000 you would think that they would be a lot more receptive to questions.

    I'm sorry that you did not get any help from him after all the time, energy and money that you spent. It's disappointing to learn that he blamed your attitude for your lack of improvement - it sounds like he can't face failure on his part. Hopefully you have found something that does help you by now - maybe pursuing Lyme??

    Good luck in your journey, I very much appreciate the input before wasting alot of money.

  11. SpecialK82

    SpecialK82 New Member

    Hey Vicki,

    I have been to an FFC and have had the testing - I agree with you that it was very valuable. It is still use it as the basis of what I know is measurably wrong with me. Unfortunately, the treatments did not help me, I was declining so I stopped going. And it was expensive to boot. (Although nothing looks expensive now compared to Cheney, lol).

    I have had FM for 11 years and CFS for the last 2 years - these last two years have been miserable and I'm looking into all the avenues. I have been to see Dr. Lerner and was treated with antivirals for 8 weeks but had to stop as it was causing serious gastrointestinal problems.

    I think alot of what Cheney says makes sense, I just don't think I can put out that kind of money without hearing any kinds of real improvement from people. I may not be reading the right things - I couldn't find a website for his clinic - is there something that he has on the internet, directly from him, about his protocal? You had mentioned a recent video - is that on the internet??

    I read today about Cheney doing stem cell research and that he will be presenting his finding in his April presentation. I must say, I am very excited to hear about his progress as I have felt for awhile that it may be key to helping us - even though it would probably be years away before the average person could get treatment (nevermind about the cost!!)

    I am not seeing him at this time because I can't justify the value compared to the pricetag, but that could change in the future as I learn more about him.

    Thanks again.

    Soft hugs,

    [This Message was Edited on 02/21/2009]
  12. wendyo

    wendyo New Member

    hey do you or others know which ffc are the best to go to?
    what do they all test for?