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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Charity Doctors?

Discussion in 'ME/CFS Doctors' started by jimells, Sep 12, 2012.

  1. jimells

    jimells Senior Member

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    northern Maine
    Has anyone ever heard of a ME/CFS specialist in the US who takes charity cases?

    I do have Medicaid, which so far has paid for every test ordered by the useless specialists I have been seen. But Medicaid won't pay for providers that are located outside of Maine. As far as I can tell, there is no one in the entire state that knows anything useful about ME/CFS, or has the name of a useful specialist, or is willing to find one.

    Everyone of these specialists (neuro, endocrine, rheumys, more neuros) tells me one of two things:
    1) You're not sick
    2) I can't help you and I don't know who can

    Although the doctors are more than happy to order tests that don't tell me anything I don't already know, they absolutely refuse to order Natural Killer cell tests, or extensive virus tests, etc. Pretty much any test that might actually inform treatment is excluded.

    Some of the less useful tests that have been ordered:
    Breathing test, even though I have no shortness of breath, low oxy saturation, coughing, etc.
    Echocardiogram, even though there is no evidence of any kind of heart disease
    Sleep-deprived EEG (I refused, staying up all night is a really, really bad idea)
    Neck MRI with contrast (I refused, I don't trust the dyes, I did one without contrast)
    Dilated eye exam (Ouch!)
    Pelvis Xray (??)
    Chest Xray that supposedly shows I have COPD
    PSA tests (I refused, my 'plumbing' is fine, the test has a false-positive rate of 75 percent)
    Colonoscopy (I refused, the preparation is way more than I can handle, thankyou very much)

    My primary care provider does believe I am sick, and has determined I have CFS, but will only treat symptoms, and won't look any deeper. Meanwhile I am getting sicker and sicker. My only hope now is to see a real CFS doctor, but that seems unlikely, as I have about $200 in the bank account and zero income, and my disability claim is old enough to go to school, with no resolution in sight. Even if I do some day win the disability claim, I will then have to wait 18 months to get Medicare.

    It strikes me as cruel and unusual punishment to know there are doctors out there that actually have some success in improving their patients' lives, but I have no access to them, as far as I can tell...
  2. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
    Colonoscopy is a worthwhile test to have if there is any indication to need one eg family history of polyps and/or bowel cancer. In Australia they give you a light general anaesthetic, so you are unaware of the procedure.

    I have had 4 of these tests already. Two polyps have been removed already, hence requirement for more frequent follow-up tests. (I have family history on both sides of my family) Sure it is an unpleasant preparation & you do need a support person to drive you to and from day surgery clinic or hospital. It's worth it for peace of mind.

    Another useful test is abdominal ultrasound. Takes about 5 mins, is not painful. They measure Abdominal Aorta to check for any aneurysm (my dad had an AAA)...once again family history. They also measure size and note texture of all abdominal organs. Found out I have fatty infiltration of my liver and it has a coarse texture like cirrhosis. (Gastroenterologist ordered this test due to elevated Liver Function Tests)
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    Can you move to Mass? That's where my Dr is at. (Edit: He doesn't take much for insurance, so you would have to pay out of pocket! and I have heard of another Dr in MA who is good, she doesn't take insurance at all!) I saw one in NH, he did not help me much, if at all. I am doing much better these days, but not "cured".

    GG

    PS Check out MA CFIDS, http://www.masscfids.org/services

    Under services:

    We at the Massachusetts CFIDS/ME & FM Association understand just how difficult this situation can be. We offer several types of support services.
    We can:
    • Assist with patient referrals to healthcare providers
    • Give guidance on disability process and issues—please see the Disability Handbook available on our website
    • Provide information about active support groups or other sources of support
    • Respond to general questions about these illnesses.
    To obtain services, please fill out the Contact Us form or call our Information Line (617) 471-5559.
  4. jimells

    jimells Senior Member

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    northern Maine
    Hi gg, it's good to hear you are doing better. I am constantly telling doctors that many PWME experience substantial improvements, if they get adequate treatment, and that I actually know people who have improved.

    I grew up in Derry, my father's relatives still live in Lynn Mass. (A very rough town) I've spent more time in Mass. than I care to remember. I'd sooner poke my eye with a sharp stick than live there again. Of course, that ignores the fact that moving cost $$, and landlords don't let people stay for free, no matter how poor. When I lived in Philadelphia I knew some folks who squatted in abandoned buildings, but I'm way too sick to live like that.

    I will check out the MA CFIDS -- maybe they know a doctor who does charity work.

    I know from very unpleasant first-hand experience with the UMass Medical School/Hospital in Worcester that Mass hospitals are no longer forced to do charity care. They even brag about all the money they've saved in that area. Instead they assume everyone has Romneycare. When it comes to out-of-state patients, well, hospitals don't want them to come through the door. As for the doctors, I'm sure more than one has some compassion for patients caught in a very tight vise.
  5. Mouse girl

    Mouse girl

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    If you win your case, which most CFS cases eventually do as long as you keep appealing, you will qualify for Medicare (if you get SSDI) starting two years from the date they start paying you. Now, in my state, at this time, it takes about 1 years since filling to get to a hearing and win. And since I qaulified for SSDI, I recieved backpay from a year prior to the date of application. So, once I won my hearing, I got Medicare right away. And let me tell you, Medicare is like gold. It is absolutely the most amazing and wonderful gift ever! Docs love medicare. Many docs who don't even take any health insurance will take medicare. Now, there are some docs who only take cash, of course, but I have had the most excellent care with Medicare. I saw the top allergist at UCLA, he does not take insurance and is very expensive, but he took Medicare and wrote off my co-pay. So, I paid nothing. Even my doc who did research with him and got a deal had to pay. I also had my first ever eye exam and see Beverly Hills docs. Keep on fighting, most cases do win at the hearing level if you have an MD that supports your case. Keep asking around about docs too. I had been sick for 15 years before I ever heard of my doc here in town and he is amazing!! Now, he can't do much for CFS but their really isn't much viable treatment for CFS. But, he's a great doc, who was so helpful with my disability stuff. I had never heard of him before and had been active in support groups etc and gathering info. So, you never know what might turn up. He's a rhuemo. I would suggest trying different rhumos as these guys end up treating lots of CFS patients since they treat the fibrites. Who knew? I wish someone had told me that way back when too! I have both, myself. But, consider the CFS to be the real disabling one for me.
    camas likes this.
  6. jimells

    jimells Senior Member

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    northern Maine
    Yes, winning my disability claim would make a huge difference. I live 12 miles from town, but I had to park my 20 year old pickup because I can't pay the insurance. Now I have to bum rides from my neighbors to get groceries twice a month.

    I knew there is a waiting period for Medicare (seems like an arbitrary, stupid, and cruel rule) but I didn't know if they figured the date from the date of disability onset or from the date the claim is decided. Thanks for clearing that up.

    So the Medicare would pay for an out-of-state doc who knows something, and with SSDI I might actually be able to pay for travel. What a concept - access to a competent doctor.

    If you hang around this forum a while, you will soon come across quite a number of folks who would disagree with this statement. If a doc says there's nothing he can do, one might want to consider looking for a new one. If I ever get Medicare, I know I will.
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    good luck finding a doc who knows anything about CFS and takes Medicare, even out of state! Not trying to be a bummer, but I think that's like finding a needle in haystack, hopefully someone will chime in though!

    GG

    PS I would probably start a thread with more specifics in it, if I were you.

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