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CFS doctors in NY/NJ that take Aetna

Discussion in 'ME/CFS Doctors' started by forgottenstar, Aug 5, 2010.

  1. forgottenstar

    forgottenstar

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    I've been reading a lot about CFS and strongly believe that this may be what I have been dealing with for so many years without answers.

    I want to find a doctor who can help to diagnose me properly, but I have been running into a roadblock when it comes to coverage.

    I currently have Aetna (which will be changing to Oxford in January) and every time I find a doctor, they are not covered. Im 23, so coming up with 600+ just for one appointment is not happening, especially when all of my pay goes towards my rent, regular bills and the piles of medical bills I have.

    Does anyone know of any good doctors who take Aetna that are in the NY area (5 boroughs) or Northern-Central NJ?
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
  3. forgottenstar

    forgottenstar

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    I checked out the co-cure site for NY and NJ and couldn't find a doctor (other than a chiropractor) who take my insurance.

    I found a rheumatologist, but her first appointment available for new patients isn't until October 1st.
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    3,866
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    749
    Concord, NH
  5. forgottenstar

    forgottenstar

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    Im checking today to see if her Brooklyn office has an earlier appointment available and if not then Ill make the October 1st appointment.

    Thanks so much for the sites and your help :D
  6. forgottenstar

    forgottenstar

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    Well I called, and they wouldn't take me on as she doesn't deal with CFS- although her name is listed on another forum for this. hmph.

    I started looking at the other site this morning before work, got through a few names but so far no one that is covered through my insurance.

    Is it always this hard to find doctors who handle CFS cases AND take insurance?
  7. floydguy

    floydguy Senior Member

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    Yes, it is hard. Most docs I see are I have to pay out of pocket for. My recommendation would be to see Dr. Susan Levine or Dr. Enlander in NYC. Usually insurance covers the testing most doctors do - sometimes more expensive than the doctor visit. At least by seeing a recognized expert you will likely find an answer one way or the other. The average or even better than average "regular doc" just doesn't get CFS so don't bother with someone who doesn't specialize in it or at least has some reputation in the field. Sometimes you get what you pay for!
  8. forgottenstar

    forgottenstar

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    Ive heard of both of them, and I can afford neither. The inital visits are 300+ since they do not take my insurance.
  9. forgottenstar

    forgottenstar

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    Ok so I am completely batting zero.

    I called my insurance's ask-a-nurse to have them recommend a specific doctor specialty who can properly treat and diagnose me. She suggested I see a psychatrist.

    What do you think are the best "types" of doctors to see in order to be diagnosed? I cannot go to my regular PCP-- Im actually looking for a new one. He was great for about 2 years and then his practice got too big- I went to him once a month for a year and a half with chronic sinus infections and he would give me a zpack or something of that nature and send me on my way- never once suggested I see a specialist. I took it upon myself to go to an ENT and was scheduled for surgery on my first appointment. Turns out I had a cyst in my sinus cavity. Needless to say, he acted very shocked when I told him what the ENT had found.:rolleyes:
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I had an infectious disease (ID) doctor diagnose me. If you are willing to travel, I will give you his name, he does not treat.

    Perhaps Internal Medicine, I suppose a PCP also. Not sure.
  11. paddygirl

    paddygirl Senior Member

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    Hi Forgottenstar,

    Although I don't live in the States, I've been researching doctors too, as when treatment come out it will take more time to filter through to my country. Especially with some of the attitudes I come up against.

    One name I've seen a few times, I think on Co-cure and njcfsa.org is Dr Podell. I had a look at his website. I believe he gives talks on CFS. Sorry but I haven't a clue on the insurance question.

    In fact the New Jersey CFS group is fantastic. I think they have a doctor list. I was in touch with them about Judy Mikovits planned talk for them in October and they responded very quickly. That might be something you could go to for starters.

    Wishing you the best.

    Paddy
  12. minimus

    minimus

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    I live in New York and spent quite a few years looking for a doctor to help me with CFS. Even if you were a multi-millionaire, you would still be SOL if you were looking for someone to treat you effectively for CFS. Let's face it, there are only a few doctors in the whole country who are considered to be real experts on CFS and even they aren't especially good at treating patients effectively. Personally, I have to fly to North Carolina once a year to see Paul Cheney and pay for that visit almost completely out of my own pocket, even though Oxford is supposed to reimburse me for out-of-network physicians. Unfortunately, when they see the CFS diagnosis code on the reimbursement forms, they just pay back almost nothing.

    So finding a traditional "in-network" doctor to diagnose and effectively treat you for CFS in the New York area is not something I have had success with. Frankly, I doubt it is going to happen. I can only think of about three physicians in the whole country who specialize in CFS and have had some success in treating the illness and are currently practicing (Peterson, Cheney, Salvato). If, on the other hand, you want to just get a diagnosis, then you should probably go to Susan Levine in New York. (I went to Enlander and didn't like him at all...) If you become disabled, you want someone like Levine to be able to document your illness so that you can receive SSI and Medicare. She seems to have success on that front at least.

    Otherwise, if you can find an in-network chiropractor who specializes in CFS, they might be worth visiting. There is a chiropractor in mid-town, Howard Benedikt, who also has a masters degree in nutrician. I saw him for lower back problems. When I told him I had CFS, he knew much more about the illness than any other doctor, traditional or alternative, I had seen in New York. It turns out he used to host a weekly radio show on "complementary medicine" and knows Paul Cheney. He may be able to recommend some supplements that would be helpful to address your specific issues.
  13. bee33

    bee33

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    Dr. Levine's first visit is $350 and follow up visits are $100. The bloodwork was ordered through my PCP so it was free. I don't know your financial situation, but for me that was very affordable, and I am on Medicaid.
  14. forgottenstar

    forgottenstar

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    Thanks for the suggestions minimus. I think Im actually going to try my luck with an internal medicine doctor...after i get all my records from my old peditrician. (When it all kind of started).

    Bee- between my rent, health insurance (I have to pay out of pocket), car insurance, transit costs to work (180 a month) and my regular household bills, I have about 500 a month to "live" on... I dont go out much (if at all) and I still seem to be broke at the end of the month. Plus it costs between 25 to 50 dollars every time I see a doctor (which is usually where my money winds up going to). Coming up with 350 or 500 or whatever the initial visit costs (Ive seen upwords of 700 for some doctors) is not something that can be accomplished at the moment.

    I cant believe how NY is supposed to be a medical 'mecca' if you will, and there are only 2-3 doctors who diagnose and treat CFS here. It blows my mind.

    Also, I dont mind traveling out of state, as long as its not too far. (NJ & parts of PA I am ok with.)
    vli likes this.
  15. I recommend Dr. David Borenstein in Brooklyn, NY. Accessible by subway. He takes most insurances--I don't know about Aetna specifically. He does not charge an arm and a leg. He does the Teitelbaum protocol. His website is davidborensteinmd.com.

    Also see if Aetna has something called Multiplan--I had Oxford and a doctor wouldn't take it and I came across some obscure info about Multiplan, called Oxford and it turned out they DID offer it and I was able to use it. Hard to explain what it is, but it worked--it's like a substitute insurance--copay is very slightly higher.

    There is not really a "type" of doctor but rheumatologists do fibromyalgia. Generally doctors who take a specific interest in CFS are the ones to go to. And of course get tested for Lyme and coinfections (babesiosis) by an ILADS doctor (hard to find those too but start at ilads.org).
  16. Sicktoolong

    Sicktoolong

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    Try the Integrative medicine Center at Beth Israel Hospital, NYC. Dr Martin Ehrlich. Not sure if he takes your insurance. Google him, he has a website with that center of the hospital. It is a separate division. Also, I know people that go to UMDNJ in Newark. I was told they have a CFS center of some type there.
    Best of luck to you
  17. undcvr

    undcvr Senior Member

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    I go to a doc on union sq in nyc. He is at a clinic that takes your insurance. He is actually a virologist that specialises in hiv but because of me, I basically made him treat me for cfs. I have ebv and hhv6. If you want his info please pm me. I started Valcyte in Nov and have basically recovered.
  18. nycpots

    nycpots

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    Would love the name of your dr. in Union Square.

    would love the name of your doctor in Union Square in NYC.....

    What was your history when you went to see him?

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