1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
Discuss the article on the Forums.

Dr. Cheney...What is the Majority Vote???

Discussion in 'ME/CFS Doctors' started by alexk201, Nov 30, 2010.

  1. alexk201

    alexk201

    Messages:
    49
    Likes:
    22
    NJ
    Hey gang!

    I am thinking about going to see Dr. Cheney, however, with his HUGE fees im sure to be in alot of financial problems.

    Is bankruptcy worth going to see him?? Ahhh.....why does this have to be so difficult.:headache:


    How about Dr. Peterson or Dr. Lapp?
  2. caledonia

    caledonia

    Messages:
    2,717
    Likes:
    1,310
    Cincinnati, OH, USA
    I personally wouldn't go into bankruptcy to see a CFS specialist. It's pretty much of a crapshoot whether you would get well enough to earn back all the money you spent. Then if you didn't get better, you would be like you are now, but destitute.

    I would try to find some kind of cheaper treatment (ie naturopath) that helps you feel somewhat better/more consistent/stronger in preparation for XMRV treatments (ARV's).

    On the other hand, if you're going downhill fast and need to do something now, maybe some Ampligen from Lapp?
  3. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,218
    Likes:
    1,567
    Australia
    No, absolutely not. The additional stress is not worth it for starters.
  4. Athene

    Athene Never give up

    Messages:
    1,130
    Likes:
    147
    Italy
    I agree. I worked myself into near destitution to see De Meirleir and my mother sold her house, partly to bail me out.
    I don't know if they're all charlatans like Meirleir, but however good they are, they don't know how to make us better.
    Wait for a big medical breakthrough before opening your wallet.
  5. Glynis Steele

    Glynis Steele Senior Member

    Messages:
    400
    Likes:
    83
    Newcastle upon Tyne UK
    Hi Athene,

    I have been looking at De Meirleir's work, and can't fathom out why he has not simply tested CFS patients for dla, seeing as he found dla producing bacteria in their stool samples, and that the 2conditions have such similar symptoms. It just seems so odd to me, and I don't get it at all :confused:.

    Dla symptoms are severe lethargy, changes in gait, slurred speech, or difficulty in speaking, hyperventilation, confusion, disorientation, dizziness, blurred vision, the feeling of being drunk without having had a drink, headaches, jaw clenching, carb craving and irritability. If you look at the symptoms section on this forum, you can just about see all of these symptoms being described.

    Very puzzling.

    BW

    Glynis
  6. Esther12

    Esther12 Senior Member

    Messages:
    5,132
    Likes:
    5,002
    I agree.

    I think it's barely worth the trouble of a car journey to see a CFS specialist.
  7. Marty

    Marty Senior Member

    Messages:
    117
    Likes:
    17
    I agree that it is not worth the trouble of traveling. I was very sorry I went to Miami. I'm so angry that I didn't even want to watch Miami on the football games.
  8. Cloud

    Cloud Guest

    Hi Alex, Before this year I could not have said this, but....give it just a little more time if you can. In another 6-12 months we will have a much more definate picture on effective treatments.

    I have gone broke more than once pursuing recovery, but I have also attained very effective treatments (anti-viral) in my determined pursuit. So, I'm against closing the door on the going for broke idea without lots of consideration. Obviously the best idea would be to network and get as much info as possible, like your doing now, and make the best possible informed decision. You will need the diagnostics done regardless of how long you wait or which specialist you see, and then you will be ready to jump into the right treatment when it becomes available. I lucked out and found a treatable condition (CMV) that was contributing to a lot of my symptoms. Having all the diagnostics done was good anyhow because now I'm ready to pounce with the upcoming unveiling of what's really behind the curtain.

    I would suggest exactly what your doing now....lots of networking for opinions so that you can make the best informed decision. Get all the diagnostics done that you can through a less expensive source....you will need this done whatever else you do anyhow, and you may turn up something that is treatable. Even the big name ME/CFS docs are on the edges of their seats waiting for more research....so, if you can, give it a little more time.

    I see Dr Peterson and can help with questions you have about him....but I will tell you that he has a very long waiting list. I haven't heard anything yet about the WPI accepting new patients, but I would look into that too.
  9. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Quite agree Athene - seems like awaiting the big breakthrough before opening one's wallet too wide. Though many more now understand symptoms and can aid some.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,386
    Likes:
    5,113
    Albuquerque
    I agree with Cloud--do the kind of research you are doing and get good diagnostic tests that may put you in line for emerging treatments. I tested for XMRV (I'm positive) and that is helping me focus on treatment options. I don't think any of the ME/CFS specialists are really clear on the best approach. There is a lot of research pending that may make our choices easier in the next year or so.

    Most of the specialists have very long waiting lists which makes it even harder to choose--cause you can't predict the treatments they will be offering a year from now when your appointment rolls around!:D

    Hang in there. This forum will keep you in the pipeline.

    Sushi
  11. drex13

    drex13 Senior Member

    Messages:
    186
    Likes:
    13
    Columbus, Ohio
    I was diagnosed with CFIDS back in 1996, got myself better after about 3 years but have been spiraling downward for the last few years, and recently have gotten worse. My problem is that the doctor who diagnosed me is no longer in practice in my state and no longer has my medical records, and neither do I. Basically, I have no proof that I was ever diagnosed so I have to start over from square one. I mentioned all of this to my current doctor (who was also my primary back then) and his reponse to me was that no one really uses that diagnosis anymore. Basically, he is one of those who thinks it's not real I guess. But, I don't really know where to go to see someone to get diagnosed again. Any ideas ? I live in Columbus, Ohio if anyone knows of a doctor.
  12. Marylib

    Marylib Senior Member

    Messages:
    428
    Likes:
    9
    New Zealand
    Don't do it.

    If you have a doctor who is willing to prescribe you something to help with sleep, pain (lots of ME/CFS protocols on the web and probably on this site) then stick with that for now. If you need a specialist to qualify for disability I guess that is another matter.
  13. caledonia

    caledonia

    Messages:
    2,717
    Likes:
    1,310
    Cincinnati, OH, USA
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,913
    Likes:
    780
    Concord, NH
  15. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Cheney has a handful (literally) of cures in his 2 decades-plus of practice. The only logical rationale for selling the farm to see a doctor is if you're sure he can cure you, send you back to work, and make it all back before starving to death. The chances of even Cheney getting you there is very slim (handful divided by thousands of patients he has seen = less than 1 percent chance)

    If you have a considerable amount saved (seeing Cheney is upwards of 7k for the first visit I think), I would save it for something you know has a high probability of getting you to the finished line. If you spend it all on Cheney, you won't be able to afford the therapies he wants you on anyway, since they're all experimental. If you spend it all on Cheney, you won't be able to afford ANY experimental therapies down the line unless you're in a clinical trial. Count your blessings for having a hail mary, and use it on a sure-r thing than Cheney lecturing you for 8 hrs.
  16. jimbob

    jimbob ME/CFS84-XMRV+

    Messages:
    321
    Likes:
    8
    myrtle beach, s.c.
    I say wait it out a little longer if you can. I was in process of making an appointment with him and then canceled when I found out cost was double what I thought it was. Don't go bankrupt just yet.
  17. Wayne

    Wayne Senior Member

    Messages:
    2,182
    Likes:
    1,249
    Ashland, Oregon
    Hi All,

    Joey, your post pretty succinctly sums up my own perspective. There are really many, many different things PWCs can try, some of which are very low cost, and have resulted in some significant improvements for some. Why not try some of these low-cost strategies, some of which likely have as good or even higher probability of achieving improvements than visiting Dr. Cheney?

    Another thing I often consider; a lot of XMRV news should be breaking in the next year or so. This seems like a time to be patient, see how this all plays out, and determine then what good strategies are available to us, and within our own price range.

    Wayne
  18. alexk201

    alexk201

    Messages:
    49
    Likes:
    22
    NJ
    Thanks for all the responses gang! It really is very tempting to wait and see how everything plays out but we know that alot of us have been "waiting" for years if not decades to see how things play out and its always the same story...some get better and some do not with new treatments. Yes, there are promising new topics and therapies on the horizon; Ampligen, GcMAF, XMRV, Retro-virals, anti-virals, ect....

    However, lets try to think outside the box and understand how this illness affects us on the deepest levels. By using Ampligen we can reverse the Rnase-L malfunction and GcMAF will give a super boost to our immune systems thus suppressing viruses such as EBV, CMV, XMRV ect...

    But when we are sick for so long, how long will it take our bodies to "unlearn" functioning in the sick mode. Meaning, even after we successfully stop the viruses from replicating....how long will it take out bodies to get back into homeostasis?

    This is why I am so much leaning towards Cheney and his venture into the world of Stem Cells. Current science is telling us that stem cells are able to change DNA/ genetic expressions,thus,getting or bodies back into homeostasis/proper functioning.

    Cheney is a smart man and it really interested me as to why he backed away from the approach of tracking down each and every individual pathogen and trying to eradicate it....to exploring the cause as to why our bodies are letting these pathogens replicate. Lets not forget that around 80-90% of the healthy population have EBV and CMV antibodies.....but they are not symptomatic because these viruses are latent.....in our situation they have been re-activated.

    Just my thoughts ;)
  19. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Alex,

    I agree with much of what you say. However, you do realize you don't need to see Cheney to get stem cells right? It's nice to have his echo testing done to show you are "ready" (in his opinion) for stem cells. Most likely if you haven't done major terrain treatment, he will say you are not and will put you on a 6-month course of the cell signaling factors (which in and of themselves are not that expensive in the grand scheme of things).

    Depending on where you are, there is a doctor in Santa Rosa, CA which has the CSFs, and another doctor in Fort Worth, Tx. These two are decisively cheaper than seeing the big dog.

    To put it bluntly you will be spending around 10k to find out that you aren't ready to get stem cells, spending a few hundred on the CSFs (and some other relatively inexpensive supps like artesunate from hepalin), then spending another 15-17k on the stem cells.
  20. alexk201

    alexk201

    Messages:
    49
    Likes:
    22
    NJ
    Thanks for putting things into perspective, I totally agree! I will contact Dr. Larry Sharp from Texas and see whats up.

See more popular forum discussions.

Share This Page