Discussion in 'ME/CFS Doctors' started by alexk201, Nov 30, 2010.
Who did you see in Miami? Dr. Klimas?
I became sick in 99 and saw Dr. Cheny in 2001-2003 and it cost me a fortune. I think he is a genius however if I could do it over again I wouldn't have wasted my money. Then to Dr. Lapp whom is very personable but still same old, same old and waste of money. Now I just started with Miami research and they lost all my new lab tests done there. So I would wait until they have this blood test approved and there is a definite treatment. Most of everything
you can get off this website. Good Luck Kathy I saw Dr. Irma Rey in Miami due to Dr. Klimas patient overload. I had been on Klimas waiting list until she added Dr. Rey. she is very nice so far. Miami is a very busy research center located in downtown Miami.
It is worthwhile finding a good doctor, however the point is that it is not worth spending a fortune. Unfortunately, there is no straightforward cure.... Unless you have been misdiagnosed (not uncommon!).
What aggrevates me is that my insurance will pay for me to go to a very long list of doctors and specialists that know absolutely nothing about my illness. However, if I want to see a doctor that has actually treated patients with my illness, and knows something about it, insurance does not cover.
I understand not covering expensive experimental treatments for CFS, but it would sure be nice to have the co-pay just to have discussions with a doctor who knows what I am talking about and has actually seen patients like myself. At least I can learn what the possible options are and have a professional listen and make some suggestions based on experience. This would also help the doctors learn more about CFS. I'm completely disabled with this disease but I pay more into the insurance company than they pay out. It's really a disaster. The insurance company could still make money off me it they only paid for me to visit someone familar with my illness.
Sorry for the digession. As to the topic of this post, I would not pay the thousands to see any CFS specialist now. There should be an option to have insurance or medicare pay for a visit to a specialist, as in most other diseases, even those without many helpful treatments.
pine108kell, your post echoes what I would have said, word for word. I've run through all the varieties of specialists my HMO has, and none of them have any clue or are any help, except to reassure me how normal all my tests are. Of course this is no reassurance at all in addition to being no help.
Yes, I'm glad I got an exhaustive ruling-out of everything *but* CFS, but after that, what has my HMO got to offer me? Sleeping pills, pain pills, and anti-depressants (for depression, not CFS). And I had to put up a bit of a fuss to get decent pain medication. This is what happens when there's no standard of care for a serious disease besides a few little band-aids over your worst symptoms - if you kick and scream for them. Apparently I am *not* entitled to see a doctor who has ever laid eyes on a patient like me or has ever seriously looked into the existing research on my disease. And I'd say just the same as you do, pine - I'm not even looking for experimental or non-approved treatments, just a little understanding.
I have to give a shout-out to my physical therapist, who HAS researched my disease and has had good advice to give. Some of it is kind of playing by ear - seeing how I react to different exercises and activity strategies - but he's as on top of things as he could reasonably be expected to be. I almost fainted when we were discussing my neck pain and he said there isn't any literature directly about neck pain in CFS, so he has to figure things out based on other knowledge and some experimentation. MY PHYSICAL THERAPIST HAS RESEARCHED MY DISEASE!! Amazing. I need someone like that with an M.D. after their name.
It depends to some degree on how much you want to fight your insurance company and also how they view ME/CFS. You could, for example, ask how many ME/CFS patients a particular specialist has seen or followed; if there isn't anyone with the background, you could argue that the current network contains no one with the expertise and they need to send you to an outside expert. The difficulty is that they may not view Me/CFS as a distinct illness needing specialty care and decide you only need general medical care. This type of effort will also take knowledge and time, more than what you want to expend. You could also argue that some symptoms, such as POTS/OI or bowel symptoms related to ME/CFS, are better handled by someone familiar with ME/CFS. That way, you might save them money in the long run in regard to ER visits/ seeing even more specialists/ getting more tests done. [Not sure if this would be true, but argument's sake.]
My health insurance has certain good things to it so I've kept it but rather than waste my energy on arguing, I was fortunate to have the funds and just decided to spend them to see specialists. I don't expect miracles necessairily but they help to guide me through the symptoms I experience, know what's usual vs. not for ME/CFS, keep me up-to-date on the latest stuff, and I also consider it a social good: i.e. the more patients they see, the more experience they can develop. BUT if you are on tenuous financial standing, I would not recommend spending the money right now.
[Devil's advocate point: sometimes I wonder if ME/CFS sufferers went to the doctor/ ER/ etc. every single time an unusual or worsening symptom came up and/or demanded more testing (although these acts have negatives as well), whether the insurance industry/ government would pay more attention to us. Become a money pit and they might start to look into why.]
Dr. Sharp's doctor visits are covered by insurance. Just get the medicines you need and don't do any extra testing other than lab work. The CFS are worth the money. Plus the rest of the protocol is extremely valuable. He is working directly with Cheney and has all of his protcol since Cheney wants to have his work available to more patients so is working with other doctors.
You can also try a Google Site Search
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