HELP Anyone seen Dr.Cheney??

Discussion in 'Fibromyalgia Main Forum' started by ladude, Oct 13, 2006.

  1. ladude

    ladude New Member


    Cheney seems like the most knowledgable doc on CFIDS.

    Just wondering there must be someone here who has been treated by him or knows someone that was.

    I am sure he is worth the 6-8K but am interested in hearing feedback from others.


    Thanks,

    LAdude







    LAdude

    [This Message was Edited on 10/14/2006]
  2. findmind

    findmind New Member

    Hey, how are you? Go see Cheney...call the United Way and see if there is anyplace you can stay for 6 weeks!

    Where is he practicing? N. Carolina? Dallas?

    Write Carol Sieverling at the Dallas Ft Worth CFIDS Support Group. Ask her where she stays while seeing him, or if she knows anyone there you could room with!

    Is there a YMCA in the town? Cheap place to stay...I did it for a whole 6 mos once, it wasn't too bad.

    Any other charities you can appeal to in order to find a place to stay? ASK the office nurse or manager, ask them to ask around for you!

    There's always a way, and...

    There's always hope!
    findmind
  3. maedaze

    maedaze New Member

    What do you mean your too sick?????? I thought he was the leading man in cfs to see????????? Then they must know how sick we are!!!!!

    I do hope you get to go.. I will not have that chance living on the other side of the world. But i would ring them back and lie if you have to and tell them you are well enough to travel.

    After waiting a year and a half for an appointment you would think the least they could do is see you!!

    Wish you all the best and please let us know what they do, say etc... surely they must be able to help.
    goodluck, too good of an opertunity to miss.
  4. ladude

    ladude New Member

    hey

    this has to be short

    thanks findmind for your good suggestions very appreciated and encouragment

    cheney is still alive and well after heart transplant and sees patients

    my hands and feet get cold and sweaty and that tells me a bad bad crash is coming
    it was never like this


    someone must have been treated by him, the list to see him is so long it takes 16 months or so for a call back

    anyone? anyone know anyone who knew someone who....?

    LAdude


  5. maedaze

    maedaze New Member

  6. mindbender

    mindbender New Member

    Dr Cheney's stuff is all over the place. You don't need to see him specifically. Some people have to much time on their hands.
  7. spacee

    spacee Member

    Back in the 1990-1995 my sis was a patient of Dr. Cheneys. I was a patient of his partner at the time, Dr. Lapp.

    And I have known others who were patients of his. I live near Orlando and there used to be a group of women who had their appts together and would drive up.

    Then there is one other person I am still in contact with who was a patient of his for years.

    Ermm. My sister recovered spontaneously. The other's I don't know how they are doing. The one I am in contact with...isn't so well. (But I have to add she doesn't "like" to take drugs.

    Her hubby and daughter have CFS also. They are doing v. well. But there again, I think it was mainly due to their own immune system.

    Back then about the only things The Cheney Clinic was using was Klonopin, Kutapressin, and B-12. Of course, he was come a long way.

    I do remember a woman scoccor player who has CFS and was a patient of Dr. Cheney's. He said the only thing that he could recommend to her was juicing. So, she traveled with her juicer, got in cities and found a grocery store and did it. It didn't cure her. She could play the games. But whent the other players went out partying afterwards, she couldn't go...had to rest.

    But then, again, this was some years ago.

    Should you try Dr. Lapp? Easier to get in to see...that is why I saw him. But after parting ways with Cheney, he is definitely not cutting edge.

    I remember a man who used to post on this board...Paul Mark, I think. He was a patient of Dr. Cheney's. I believe he weighed 120lbs. He didn't seem to be absorbing nutrients. I don't think that Cheney could help him.

    I know none of this is encouraging. And most of it is ancient news. But it is what I personally know about.

    I also remember that when my sister was there...one of the reasons for all the lab work besides diagnosing was the research that that he was doing. He had graphs and things comparing who had which kind of positive blood work. And who responded to which treatment.

    I don't imagine that this helps but just sharing what I know.

    Hoping that something will help you!!!

    Spacee

    PS. Mindbender...don't think you have the whole story,[This Message was Edited on 10/15/2006]
  8. mindbender

    mindbender New Member

  9. lenasvn

    lenasvn New Member

    Mindbender- sorry, my brain passed on long time ago, what does your post(s) mean?

    Sorry for being such a fibro brain!!

    Hugs
    [This Message was Edited on 10/15/2006]
  10. karinaxx

    karinaxx New Member

    video i posted from cheney just a few hours ago?
    if not, check my profile under video cheney.
    it is incredible interesting!
    karina
  11. ladude

    ladude New Member

    Your input was honest most importantly and indeed useful. Wish it was filled stories of amazing success….but truth trumps all.

    Thanks for the time line, it is old news in a way but still insightful. I have his video, (put it on DVD to loan out) and read everything I can find on his theories but still wonder after the testing what he says to do that might be new. Maybe nothing but I can see the value of the testing… this hopefully would give us an good picture of what exactly is going on in the bod so we can attack it with more precision.

    I liked Rich Carlson’s suggestions, that eating better is more important than vitamins.

    you did an excellent job on the bio page! glad you did that, will have to make some changes to my page.


    I am indebted to you, you included much more than you may have realized!

    Thank to everyone who responded even the funny ones.
    God Bless

    LAdude

    [This Message was Edited on 10/17/2006]
  12. findmind

    findmind New Member

    Carol Sieverling of the Dallas Ft Worth SG is a long time patient of Cheney's. She posts all her questions to him, and will answer you personally if you email her!

    Try it, you might like it, LOL...

    Hugs,
    findmind
  13. spacee

    spacee Member

    My congitive issues have been terrible for a while...so I am really glad that I could put some sentences together for you!

    Hoping the best for you,

    Spacee
  14. Mikie

    Mikie Moderator

    Who felt that seeing Dr. Cheney had made her well and she felt "normal" again. Other than that, I don't know of anyone else who was helped by him to that degree.

    I have a lot of respect for Dr. Cheney but in terms of his ability to help individuals, I'm not sure. A lot of what he does is his own research into various aspects of our illnesses. He's been researching the possible connection between CFIDS and heart failure for a while now.

    He was one of the first docs to recognize the neurotransmitter problems in PWC and the Klonopin he recommends has helped many of us. Dr. Cheney's contributions to further our cause and add to the knowledge of CFIDS is admirable. I know he runs a lot of tests because I sent for his packet a few years back. I do not know whether he is using the latest, most cutting-edge treatments. I think it's probably difficult to say whether one doc is more cutting edge than another in terms of treatments unless one has seen them both.

    There are many fine docs out there and I think we have to make our choices based on what we are expecting and hoping to accomplish. The FFC's are very cutting edge but we have had some here who have been disappointed in their treatments and results.

    When I was an insurance agent, my clients would tell me about their docs. One would say Dr. So And So was a quack and nearly killed him and the next would tell me the same doc was a saint. A lot depends on our own individual experiences.

    Love, Mikie
  15. mindbender

    mindbender New Member

    The thought of going across country to see a Dr just struck me as rediculous. I understand that we all need to be taken seriously by our Dr's. I travelled 4 trips, 4hrs there and 4hrs back to see a Neuroscientist who was supposed to be one of the best in the country. This was before Fibro was even mentioned. He gave me all the tests that I had already been given, and I could tell he didn't believe me. His Wisdom filled Dx, It must be some kind of Fibromyalgia. Thanks for that chief. I could have gotten that Dx from a Dr alot closer, less hastle, and cheaper. We discuss this many times here.

    Every one knows what Dr Cheney does and says. Sorry if I disrespected anyone.
  16. ladude

    ladude New Member

    Mikie thanks, always good to hear from you, I to have a lot of respect for Cheney, guess when people get better they run and never look back.

    Findmind you were right carol was very helpful, appreciated that!

    Lisapetrison have heard of Dale Guyer before, don't remember why but will look into him. Thanks for the heads up on the office staff, it can put one off w/o the warning.


    Now I feel hyper inside, like I did 2 days before the big crash when I went down down…down into the nether regions of CFIDS hell but pulse is 80 bpm, go figure.

    Ah… what would life be like w/o CFIDS…

    Think the klonopin is a life saver or atleast a brain saver. New meaning to the term brain farts. Doing 1/8 or 1/4 mg two or three times daily. Noticed no crazy seizures at night so why not during the day as well.

    Plus B12 shots, lots of sea salt and Gookinaide and eating as often as possible. With the nausa gone, eating is fun again.


    Thanks again everyone, you mean a lot to me!!!

    LAdude
  17. Mikie

    Mikie Moderator

    As you know, it has been a God send for me. I actually seldom have to take the small pieces any more during the day. Being able to go out without becoming overwhelmed with sensory input is freedom for me. When I did suffer so badly from sensory overload, though, the Klonopin allowed me to be out and about without freaking out in a panic attack or becoming so aggitated that I had to go home.

    Now, I just use it at night most of the time for really good sleep.

    Love, Mikie
  18. spacee

    spacee Member

    So glad to read you are doing better!!! That was such a frightening time.

    Hugs.

    Spacee
  19. ladude

    ladude New Member

    Karinaxx I have watched the cheney video, it is very good but long and detailed. And another video is coming out...

    Hope this is ok, this site has a relatively short transcript of the video which I find helpful.

    Tried to do notes of the video myself but it was too much. I bought the VHS, ($18.00) and copied it to DVD.

    I think I have another transcript 76 pages somewhere, if I find it I will post


    http://www.dfwcfids.org/medical/cheney/hrt04lng.htm

    take care
    LAdude