1. Patients launch $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!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

Doctor in NY who does comprehensive testing

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

  1. cjk's mom

    cjk's mom

    Messages:
    2
    Likes:
    1
    NJ
    I have seen Levine and Natelson. Levine treated me for elevated EBV & HHV 6, but only AFTER I asked her to. I agree with the above comments that you have to basically suggest to Levine what needs to be done or tested and you can't rely on her taking charge at all.

    Natelson does research, but doesn't test for everything and his lab at Beth Israel lost or screwed up my results SEVERAL times & I had to go all the way to NYC (2 hours) to have the blood drawn again because Natelson wouldn't accept any other labs results!!!. My CSF was abnormal, which he says he's seen in 30% of his patients and this puts us into the "neuro" category. He couldn't offer any treatments for me, but made sure to tell me he needed more patients and asked me to refer my friends or family to him!! I think he's a great researcher, but doesn't offer much in the way of treatment. Appointments with him are very rushed and he types his notes the entire time he's talking to you so I never really felt like he was listening to me.

    I am grateful to both doctors for the limited test results I received because at least I have some information that I didn't have before I saw them, but as far as treatments go, I've been out of luck.
     
    vli likes this.
  2. tinek

    tinek

    Messages:
    18
    Likes:
    5
    NYC suburbs - Bergen co
    I have seen dr Levine and Dr EnlanderI have seen dr Levine in November 2011 ,she looked at all my past bloodwork, did more viral bloodwork and offered Valtrex 500 mg for EBV also suplementing D3 and something else.
    The office is small and old, she often picks up the phone herself, medical records everywhere....
    I tried the valtrex but I started having big GI problems, they stopped 3 months later when I started Valtrex again, took that for 8 months but markes increased and I did not see much improvement.
    She takessome insurance, I had empireblue at that time, but she did not bill me when I changed networks.

    I have UnitedHealthcare now so went to see Enlander last fall. It is a nice new office, he did a looot of bloodwork (did not look atanything mine older than 3 months). EBV was still up so he put me on hepapressin protocol. I'm three months in and not better and maybe even worse, had headaches daily for the last month, and other symptoms are comming back too.
    He did a full medical examination, ordered some ultrasounds, which I had in his office, and the other neurological test (They should have warned me how much that stuff cost! Good I had a low out of pocket on my insurance, but still it is a few K bill without). he never called me with the test results, had to come over for a visit.
    They complained about dr Levine that she does not do comprehensive evaluation (but at least it is easier on wallet).

    It feels like you need to know what treatment you want and then pick a doctor who will provide that treatment.
     
  3. Daffodil

    Daffodil Senior Member

    Messages:
    2,929
    Likes:
    907
    i have seen dr. enlander and dr. levine. i would choose enlander between the 2. the CFS doctor in NYC who will do the most comprehensive testing...very. very thorough and will use only the best most cutting edge labs, is dr. leo galland...but i dont think he takes insurance and isnt cheap.

    when tinkek says you have to know which treatment you want and then choose the doctor accordingly, she is EXACTLY right. however, dr. galland isnt like that...he will test for everything he thinks is needed, anything you ask for, and is open to a wide range of treatments.

    i would never go to dr. levine.
     
  4. loayachil

    loayachil

    Messages:
    59
    Likes:
    24
    New York
    I overall Liked Dr. Levine, because she wasn't as myopic as so many other doctors, and was willing to try what was suggested, but again, you do need to be "your own doctor in her case".

    I currently am seeing Dr. Raxlen for Lyme. He's a very good lyme doctor (not the cheapest though) but is very easy to work with. He is only one of the few doctor's whom I ever met, that actually listened and asked you questions based on what you said to try to determine with path to take (When you said this did it feel like... or ...).
    I am currently on his protocol and Rich's protocol, and I've so far in the past six weeks had three days that I was doing 20% better. (I'm not sure from whose, but whatever).

    This may sound crazy, but we all have in our mind that we should see a "local" doctor, and seing an out of town doctor is costly. We spend so much money on visits and drugs/suppliments, that I think it would be cheaper to fly to a good doctor, even if it's once a month, then to see more expensive doctors that we aren't as happy with.

    Looking back, and if the lyme protocol doesn't work, based on what I've seen and heard, I would probably either pick Dr. Klimas' office or Dr. Bateman. I think as cfs doctor's they are probably the two best. And a $300 flight might be a lot less than a local doctor that doesn't take your insurance. (and I've also reached that point in debt that I don't even care any more)

    Just my thoughts,
    Lo
     

See more popular forum discussions.

Share This Page