International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

Seeking information on long-term outcomes with Dr. Kaufman

Discussion in 'ME/CFS Doctors' started by ivorin, Oct 25, 2017.

  1. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,987
    Likes:
    32,251
    USA
    @jeff_w I saw those posts last night and wanted to reply b/c I knew that you had found Dr. Bolognese and Dr. K did not refer you to him. But I decided to stay quiet and wait for you to reply. But I agree that the inaccurate statements should be deleted.
     
    Sushi and jeff_w like this.
  2. perrier

    perrier Senior Member

    Messages:
    696
    Likes:
    1,268
    Dear Ivorin

    How are you doing? I sure hope you are better. Please update if you can. Sending you the strongest best wishes.
     
    Forçe e Honra, Joh, bspg and 2 others like this.
  3. bostjan01

    bostjan01

    Messages:
    25
    Likes:
    26
    What is Dr Kaufman's email address and what is his new clinic called after departure from OMI?
     
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,987
    Likes:
    32,251
    USA
    His new practice (Dr. Kaufman and Dr. Chheda) is called "Center for Complex Diseases" and the office ph# is (650) 447-3001. I do know if I can give out his email without consent but if you call, you can ask them.
     
    Forçe e Honra, bspg and Sancar like this.
  5. Joh

    Joh Inactivist

    Messages:
    841
    Likes:
    4,912
    Germany
    Hi @ivorin, how are you doing? Sending best wishes! :balloons:
     
  6. Pink

    Pink Senior Member

    Messages:
    407
    Likes:
    627
    Tri state area
    I don't think my cfs is viral based, does it still make sense for me to try to travel and see Dr kaufman/chedda? (I think that mine is more my body crashing after years of being in flight/crisis mode due to various other illnesses)
     
    chris160 and Forçe e Honra like this.
  7. Forçe e Honra

    Forçe e Honra Senior Member

    Messages:
    224
    Likes:
    288
    Northern California
    @Pink - I personally think that you should still see Dr. Kaufman/Chhedda. Dr. Kaufman looks for and treats whatever is causing your illnesses/symptoms. He is treating me not just with antivirals (I do have IGM viral stuff), he is considering antibiotics (there is good reason, in my case - but he is also waiting for another lab test) - he treats my MCAS, POTS, he treated me for SIBO...so imo, he is the best because he will find out the things affecting you (and keep trying). He is not just set on any particular treatment. He is truly amazing. I feel like he saved my life.
     
    Rlman, Sancar, Learner1 and 5 others like this.
  8. Pink

    Pink Senior Member

    Messages:
    407
    Likes:
    627
    Tri state area
    He sounds great, but it would be a major trip for me. Does he take any insurance? Is there a very long wait list?
     
    Forçe e Honra likes this.
  9. Forçe e Honra

    Forçe e Honra Senior Member

    Messages:
    224
    Likes:
    288
    Northern California
    @Pink - and also treats with medication for Adrenal Insufficiency. And more. He is very thorough.
     
    Learner1 likes this.
  10. Forçe e Honra

    Forçe e Honra Senior Member

    Messages:
    224
    Likes:
    288
    Northern California
    @Pink - sorry did not see your question.

    No, he does not take insurance but they give you a Superbill you can try to bill your insurance (I am in the process with mine, he is out of network but they do cover some of out of network).

    I don't know if he is accepting new patients (or the other doc) and I do not know if they keep a waitlist but if I recall correctly from past posts, they may not keep a waitlist.

    But I was told they weren't taking patients and then shortly after I called, and he was taking them again so if it were me, I'd call and just keep calling regularly to see if it changes.
     
    Gingergrrl and Learner1 like this.
  11. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,268
    Likes:
    3,875
    Pacific Northwest
    You could also try Susan Levine, if she's closer to you (tri-state area?). I've seen some of her lab work and it's similar to Dr. Kaufman's.
     
    Forçe e Honra and jpcv like this.
  12. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,987
    Likes:
    32,251
    USA
    I feel the same.

    It seems like their status changes re: taking new patients so I agree that it is worth it to call regularly and check.
     
    Sancar, Forçe e Honra and pibee like this.
  13. Pink

    Pink Senior Member

    Messages:
    407
    Likes:
    627
    Tri state area
    @Learner1 , Dr Levine is no longer taking on any patients.
    @Gingergrrl , I will have to call and find out.
     
    Sancar, Forçe e Honra and Gingergrrl like this.
  14. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    1,574
    Likes:
    545
    I saw Dr Levine.. and she couldn't help me. I had been ill a long time at that point.
     
    Sancar, Forçe e Honra and Pink like this.
  15. perrier

    perrier Senior Member

    Messages:
    696
    Likes:
    1,268
    I don't know how to phrase this delicately.

    Can anyone let me know if severely ill patients, (bed bound) have been helped by Dr. Kaufman.

    And what meds does he use?

    He is clearly an experience physician, having worked with AIDS.

    I'm utterly discouraged by the fact that there isn't even symptom relief for those acute affected: the flu feeling, the toxic feeling, the malaise. We go to the moon, to outer space, build AI, and we cannot deal with flu feeling in the 21st century.
     
  16. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,268
    Likes:
    3,875
    Pacific Northwest
    He individualized diagnosis and treatment for each patient.

    Treatments I know he uses include IV immunoglobulins, Rituximab, antivirals, antiretrovirals, antibiotics, MCAS meds, POTS meds, vitamins, and amino acids.

    He is excellent at ordering various diagnostic tests, including labs, cultures, imaging, etc.
     
  17. pibee

    pibee Senior Member

    Messages:
    217
    Likes:
    307
    Do you perhaps know when he uses antiretrovirals? In which cases/infections?
     
  18. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,268
    Likes:
    3,875
    Pacific Northwest
    Sorry, no.
     
    pibee likes this.
  19. perrier

    perrier Senior Member

    Messages:
    696
    Likes:
    1,268
    Thanks Learner, for this helpful info.

    I'm also wondering if some really really sick folks have seen Dr Kaufman, folks who were bed bound all the time.
     
    Forçe e Honra likes this.
  20. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,268
    Likes:
    3,875
    Pacific Northwest
    You could call his office and ask.
     

See more popular forum discussions.

Share This Page