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Best US Docs?

Discussion in 'ME/CFS Doctors' started by Ren, Feb 20, 2015.

  1. Ren

    Ren .

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    Which ME/CFS physicians in the US have the highest rates of significant patient improvement?

    (This is a desperate - "What else can I do?? What else - if anything - can I afford to do? What can I one day hope to afford to do?)

    Post a response or PM me. Thank you in advance.

    .
     
  2. deleder2k

    deleder2k Senior Member

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    If you are financially "solid", I would ring up dr. Kogelnik at Open Medicine Institute in San Francisco, CA. I guess Rituximab is your best option.

    This is a price list a patient was sent in May 2014 (Not sure if it is still valid):

    Initial Exam $455.00
    Follow Up $355.00
    Labs (approximate cost $2-4K)
    Rituxan drug only $6800 per dose
    Cost per Infusion $1500-2000
     
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  3. melamine

    melamine Senior Member

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    Upstate NY
    @Ren - The best doctor for one person is not the best for all. It depends on the features of your disease expression and history of infections and toxic exposures, IMO.
     
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  4. Sushi

    Sushi Senior Member Albuquerque

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    Have you checked out the other threads in the doctors section here? That is where most of the information is.

    Sushi
     
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  5. Ren

    Ren .

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    Thanks, Sushi (and melamine and deleder2k).

    I'll comb through things. I assumed it was pretty doubtful that the cream of the crop would be within my reach, but you don't know unless you ask / look around a bit! And I thought being more familiar with who's who might help me access any writings/recommendations they might have.
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    @Ren I am not sure if you live in the U.S. (and have U.S. insurance coverage) but if you do, then the labs at OMI should be covered. It is true that the initial exam and follow-up visits are not covered but all of my lab work has been covered (and my insurance denies everything!) All I have had is a $20 co-pay for each time I do tests with Quest or Lab Corp. I have never done Rituxan so I have no idea what that would cost and assume deleder is correct. I would not be a candidate for that anyway. But I also think it depends what you are looking for and what your focus is (like what Melamine said.)
     
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  7. Folk

    Folk Senior Member

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    That would be how many doses and how many infusions?
     
  8. SOC

    SOC

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    At this point in time, it's hard to get to see a number of the best ME/CFS specialists because their waiting lists are very long (years) or their patient lists are closed completely. I think Drs Petersen, Montoya, and Klimas are on that list.

    If I were in your shoes, I'd look into OMI and INIM. Both have excellent doctors with a broad range of treatment protocols. I believe both have at least one doctor still taking patients, although it could be months before you can get an appt.

    As @melamine said earlier, the best doctor for you may not be the best doctor for another patient, so you might want to consider some of the other excellent specialists if you have more specific issues or treatments you want considered. For example, if you want Rituximab, you'll have to go to one of the few docs involved in the related research projects, I believe. Ditto for Ampligen. If you think enteroviruses are a major issue for you, you might want to consider seeing Dr Chia.
     
    Last edited: Feb 25, 2015
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  9. deleder2k

    deleder2k Senior Member

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    Cost per infusion is for one dose. I don't think you need to repeat all tests for each infusion.
     
    Last edited: Feb 20, 2015
  10. Folk

    Folk Senior Member

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    What if Dr. Kogelnik decides Rituximab is not for you?

    Does he still offer some other treatments?
     
    Ren likes this.
  11. Gingergrrl

    Gingergrrl Senior Member

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    @Folk, Absolutely and he has many different treatment options depending on the results of your testing. I do not see him but I see Dr. Kaufman in the same office. They are both wonderful and will treat you based on your specific case.
     
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  12. lazzlazz

    lazzlazz

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    I just want to gently point out that whether the labs are "covered" - and at what rate - depends on the details of one's insurance. Some people have to meet a deductible (which can be thousands of dollars on plans bought through state exchanges/federal exchange) before labs are covered. I'm required to use certain labs. If I don't, my labs aren't "covered" at all (my coverage at "preferred labs" is 80% of the allowable rate). Insurance companies can also decide that a certain lab is "investigational" and thus, will not be covered at all (and therefore, you pay the much higher rate the lab charges uninsured people rather than the contracted rate - which in my case, averaged about 1/10 of the amount Quest initially billed (I paid 20% of the 1/10!) In other words, Quest would bill $100; my insurance had a contract with Quest that allowed $10; insurance paid $8; I paid $2.

    If money is a serious issue for a person, and if insurance doesn't cover a lot of the lab tests, they can add up, so without knowing the specifics of someone's insurance, you cannot even begin to determine what their coverage for labs will be. Although I realize being seriously ill is expensive (if you can't work, that's expensive!), some people just can't afford a hit of $1000 or $2000 or more financially.
    The initial prices Quest billed for my labs at OMI added up to $7500 or so. My insurance decided the one test was "investigational" (I'm in the process of appealing this; billed amount was about $400 which I'd have to pay in full if coverage is denied after appeals are exhausted; since this test was deemed "investigational", the $400 will not count toward either my deductible or "total out-of-pocket" annual limit). Eventually I'm going to post some of the details of the tests, such as test name, price Quest initially billed, and the contracted price my insurance allowed.

    It's horrendous how Quest bills at a rate 8-12 times what the insurance company contracts for. Obviously, Quest is making money off the contracted prices, so they're making a fortune off of individuals who end up paying the "billed" price. If anyone wants some of these details, PM me - I'll share them. I'll probably round the dollar amounts just to preserve a bit of privacy (if insurance companies try to track where the data came from). To a degree, everyone is going to have somewhat different tests performed, but there probably are quite a few that most people have (unless they have lab results from prior testing). You can try to ask your insurance company if certain labs will be covered, but they very well may tell you "it depends on your diagnosis" which you won't get until you see the physician.

    Although I can include the contracted price, there's no guarantee that's the contracted price for YOUR plan, even if you got your insurance through the same company from me. I changed plans from Jan to Feb of this year, and the contracted rate for a prescription at the same pharmacy was 50% higher in one month than the other. (Study your explanations of benefits - you will likely be very surprised at the "billed" amounts vs. contracted/allowed amounts.) Luckily, I only had to pay the co-pay. One plan was purchased directly from the insurance company (Jan) while the other (Feb) was purchased from the health exchange in my state. Other than that, the plans were essentially the same. Insurance is truly a mystery. Keep in mind that insurance laws vary from state to state - the ACA made it somewhat more uniform, but far from identical.
     
    Last edited: Mar 6, 2015
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