Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Lapp, Enlander, levine, in NY/DC area

Discussion in 'ME/CFS Doctors' started by lakeshow24, Dec 18, 2014.

  1. lakeshow24

    lakeshow24

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    I go back and forth from NY and DC quite a bit.

    Has anybody had any experiences with Dr. Enlander (from NY) or Dr. Lapp (from Hunter Hopkins Center)? I also have heard of Dr. Levine in NY.

    I'm interested in seeing one of them and trying to decide which since they are both reasonably near me. They both seem to know what they are doing when it comes to CFS/ME. They even have a great rate of success at improving patients lives with these illnesses. I'd prefer to see Lapp but he is in NC. So, next on my list is Enlander. It would be awesome to know if someone has experience with any of these!

    Or any other doctors you all can recommend that you believe are experts in this field!

    Thank you!
     
    Last edited: Dec 18, 2014
  2. Sushi

    Sushi Senior Member Albuquerque

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    Here are some threads about Dr. Enlander: Here, and here, and here. If you click on Search and then Google Site Search you will find more threads including 2 interviews with Dr. Enlander.

    Sushi
     
  3. lakeshow24

    lakeshow24

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    Thank you so much!
     
  4. minkeygirl

    minkeygirl But I Look So Good.

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    I knew someone who saw Lapp years ago. If I remember correctly, he was into graded exercise. I also have not hear a whisper from him in years.

    Now that I think about it someone else went to see a woman doc in his practice and she was unequivocally unimpressed.
     
  5. Daffodil

    Daffodil Senior Member

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    I have seen both Enlander and Levine. If i had to choose between the 2, i would choose Enlander.

    If money is no object, I would see Dr. Leo Galland.
     
    Misfit Toy likes this.
  6. lakeshow24

    lakeshow24

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    That's interesting to know. I will look into leo galland. Money is an issue, but for my health I will invest exactly what needs to be done.

    As far as enlander, does anybody know how long it would take on avg to get an appointment with him? I'm sure he's probably booked.
     
  7. Folk

    Folk Senior Member

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    Not so much, I have a consultation with him in december 12th

    And I think you can get a near date if you try by now.
     
  8. Daffodil

    Daffodil Senior Member

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    why not just go to demeirleir in reno? start at the top.

    wherever you go, make sure they order the LTT ELISPOT for Borrelia!
     
  9. IreneF

    IreneF Senior Member

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    You might try Dr. Alan Pocinki on K St NW.
    http://www.alanpocinkimd.com

    "Dr. Pocinki is a general internist qualified to treat a wide array of medical illnesses as well as commmon primary care problems. He believes in a "pro-active" approach, identifying potential problems to help prevent future ones. His special interests include chronic fatigue syndrome and related conditions such as joint hypermobility and dysautonomia, as well as general preventive medicine. He particularly enjoys caring for patients with many interrelated medical problems, and encourages patients to take an active role in their medical treatment decisions.

    Dr. Pocinki is a highly educated internist praised by his patients and colleagues alike. His patients recently voted him one of the Top Primary Care Doctors in Washington in a major consumer magazine, and his peers have honored him with such awards as the American Society of Internal Medicine's national Young Internist of the Year and the D.C. Medical Society's Distinguished Service Award."

    I was his patient for a while. He had me drink an electrolyte solution and take Florinef.
     
  10. Folk

    Folk Senior Member

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    Me? Because I'll be doing with Dr. Enlander via skype. Wich is faaaaaar cheaper...

    At least for now...

    Does Dr. De Meirleir does the same treatment in Reno as in Belgium? I mean, the same tests and all?
    In reno is probably less expensive isnt it
     
  11. Misfit Toy

    Misfit Toy Senior Member

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    I would not see Levine. It's not that she is bad. I live an hour and a half from her and have had a lot of friends with CFS in the area go to her. She doesn't have a lot of time and basically just follows a basic protocol including mineral IV's, etc. No one I know has ever spoken ill of her, but she can't spend too much time with you and because of that...her ability to really take care of "your specific" needs is diminished. I think she takes insurance like Medicare, so that's one reason right there. She is on a time frame as directed by insurance.
     
  12. Sushi

    Sushi Senior Member Albuquerque

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    Yes, same tests same treatments--however his fees in Belgium are much lower than Reno in line with other health costs in these two countries.

    Sushi
     
    Valentijn likes this.
  13. Daffodil

    Daffodil Senior Member

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    I almost jumped in front of a NYC subway train the day I saw Levine - seriously. I was in the most depressed and sick state, when Levine flippantly told me I would never recover and if I were lucky, I would maybe have 10 - 15% improvement. She sounded like she could care less, was totally rude, and was even ruder when I called for my results for a scheduled phone appointment. In email, she did answer some questions but was suddenly rude again, asking me why she should answer my questions when others were paying her for her time. I was given her email address by her office! Her moods are erratic and unless there has been some change with her, I would never dream of going to see her. I had travelled all the way to NYC for total crap. I honestly cannot forgive her for the way she acted. She took away all hope...and even if she was being "honest", there is a way to speak to someone who is in that desperate of a situation. I wouldn't be surprised if she had some kind of mood disorder. ZERO bedside manner in my opinion.
    oh..she is cheap, though
     
  14. JaimeS

    JaimeS Senior Member

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    @Daffodil - ouch! Thank you for being up front about your experience! I'm looking for someone in the NY or DC area as well, and I appreciate your steering me away from that type of person.

    I am considering Dr Enlander because I have tried to contact Dr Hyde @ Nightingale twice, via both methods on the website. I waited a month between first and second contact, and still no dice. :( I read his 'Missed Diagnoses' and was quite impressed, so I was willing to travel a country away to see him.

    The issue is that so few people even know what they're talking about that it becomes really difficult to find someone. When a doc begins to specialize, I'm sure they're swamped.

    -J
     
  15. Daffodil

    Daffodil Senior Member

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    lol no one would travel to canada from the USA for a CFS specialilst. that would be silly! hyde doesnt really treat i dont think....just fills out disability letters and does tests....but i dont know for sure
     
    charlie1 likes this.
  16. aquariusgirl

    aquariusgirl Senior Member

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    I just want a doc who will put an IV in my arm and give me amino acid IVs, nutritional IVs at home all that stuff.....y is that so hard to find?
     
  17. JaimeS

    JaimeS Senior Member

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    I'm not looking for a treatment plan; I'm looking for differential diagnosis, which is why Hyde is my first choice.

    Frankly, if I could drive four hours in ANY direction and hit an ME specialist, that's what I'd do. Unfortunately, I'm in one of those 'fly over' states, so I'm pretty much going to have to get on a flight in order to get anywhere where I could receive help.

    For example, I went to the Mayo Clinic in Rochester, and that's much further away from my current location than Ottawa, Canada is, where Dr Hyde practices. NY is closer to me than Ottawa, but a five hundred mile flight and a six hundred mile flight contain equal stressors so far as I am concerned. In that case, why not go to the physician who suits me and my concerns best?

    I'm confused. Are you dissing Canada as a whole, like "no one would want to come here, in the States ME treatment is better!" Are you dissing Hyde, like "who would come see him when there are other doctors in the world?" Some third, undisclosed option?

    Or did you just wake up on the sassy side of the bed this morning?

    Sometimes that happens.

    -J
     
  18. SOC

    SOC Senior Member

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    Dr Lerner in Detroit? Beyond him, I agree that the best you can do is get on a flight out of the Midwest. These days we fly to INIM in Miami.
     
  19. JaimeS

    JaimeS Senior Member

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    Thanks, @SOC. I have no sense of geography whatsoever so I looked up Detroit. And lo! I am closer to Detroit than to any other city that may actually have ME people in it. ;) Although DC is literally ONE MILE further away.

    (Now you're probably thinking what? Where on earth IS she then? I'll give you a hint:

    Almost heaven: West Virginia
    Except when you need a doctor!
    Then it's really craaapppyyy

    And if you heard that in John Denver's voice, you're welcome.)

    -J
     
    SOC likes this.
  20. aquariusgirl

    aquariusgirl Senior Member

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    There's Dr Joe Brewer in Kansas City Mo. he's all about mycotoxins these days. Dave Ou in Atllanta. Dr Bradstreet in Georgia.
    I don't think Daffodil was being sassy. She was being real. All the Canadians come south for CFS treatment. Not heard many ppl getting much joy with Dr Hyde.
     
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