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.
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. ivorin

    ivorin Senior Member

    Messages:
    133
    Likes:
    322
    As the title suggests, I'm wondering how many of you have been long-term patients of dr. Kaufman and what it's like? How much has he been able to help you? I will be starting my road to a healthier state with him this January but as it will be my family's last money, I would still like to be sure as possible that I'm making the right choice.

    Ps I'm from Croatia.

    Pps I am aware of other posts about Dr. Kaufman but they are about first appointments and not so much continued care.

    Cheers :)
     
    Last edited: Oct 25, 2017
  2. A.B.

    A.B. Senior Member

    Messages:
    3,751
    Likes:
    23,193
    With the RituxME trial results soon to be published, it's not a good moment to make big treatment decisions.
     
    TrixieStix and ivorin like this.
  3. ivorin

    ivorin Senior Member

    Messages:
    133
    Likes:
    322
    I know what you mean, I'm just not an RTX believer. If it was working as well as we hope, we'd see more success stories from the OMI patients that were put on it. I'm not saying they are treating a hidden autoimmune disease in the Norwegian studies,but it's definitely a mistery.

    That, and I'm rapidly deteriorating since relapsing this January. If I wait another year I don't think I'll be alive, and I definitely won't be sane.
     
    Forçe e Honra likes this.
  4. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,729
    Likes:
    4,353
    Southern California
    Some of the best outcomes tend to be from Dr Kaufman's office. But everyone is different
     
    Learner1, justy and ivorin like this.
  5. ivorin

    ivorin Senior Member

    Messages:
    133
    Likes:
    322
    Just hoping to find some personal stories. It's a big decision moving for a few months to another country in this state and having my mother move with me so I can survive at all. Guess I need a pat on the back and a nod from a few people before making such a big decision.
     
  6. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,729
    Likes:
    4,353
    Southern California
    What country are you in?

    There are people here who have improved considerably under the care of Dr Kaufman. I don't want to tag them bc it's their story to share. You can search google scholar for his case studies on Bartonella recoveries for a concrete example.

    Personally I'm a patient of Dr Chheda, his partner, and I can't say enough good things about her. She is broad minded in her treatment approach, takes the time to really listen, present a many options and helps you make decisions, and goes the extra mile to get insurance coverage. She's one of the best doctors I've ever had. With her I have gone from housebound to driving and seeing friends and am continuing to improve.
     
  7. ivorin

    ivorin Senior Member

    Messages:
    133
    Likes:
    322
    I'm from Croatia and in 6.5 years the only CFS doctor I saw was KDM and his treatment hasn't helped up until now. I've just found this other encouraging story: https://www.healthrising.org/forums/threads/my-recovery-after-my-one-and-only-crash.5163/

    It makes me think I have a much better chance at stopping my decline with dr Kaufman and Cheda, and their new clinic. To be honest, my healthcare system is in such shambles I can't even be sure I don't have other comorbidities.

    That's why I wanted to see dr.Kaufman, he seems to really delve deep into patient histories and alternative and missed diagnoses.

    I'm really glad to hear you're doing so well btw, you're really doing a lot of work here at PR with your engagement, I wish you the very best of luck going forward :)
     
  8. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,729
    Likes:
    4,353
    Southern California
    Thanks @ivorin same to you.

    If you do see Dr Kaufman, do you think you'll be able to get his treatments prescribed in Croatia? It could be things like IVIG, antivirals, antibiotics, and maybe rituximab depending on your case
     
    Gingergrrl and ivorin like this.
  9. ivorin

    ivorin Senior Member

    Messages:
    133
    Likes:
    322
    I've talked to my family and decided to sell my apartment if necessary to fund my therapy, it's that bad at the moment. I'll start whatever he recommends in the States and continue at home (hopefully). If he does think I am a sure case for RTX I intend to go to Kolibri. That's the plan for now.
     
  10. perrier

    perrier Senior Member

    Messages:
    522
    Likes:
    905
    Best wishes to you. Best best wishes.
     
  11. perrier

    perrier Senior Member

    Messages:
    522
    Likes:
    905
    Since we are talking here about Dr Kaufman and Dr Chedda, can someone please outline, if possible, the differences and similarities of these two physicians. Thank you.
     
    ivorin likes this.
  12. Diwi9

    Diwi9 Senior Member

    Messages:
    547
    Likes:
    2,002
    USA
    I want to second @Jesse2233. I have had the same experience with Dr. Chheda and have also gone from being in bed 20+ hours per day, to driving again and being able to visit with friends and family a few times per week. I've read Dr. Kaufman's protocols from other patients on here, and they are matched to Dr. Chheda. She carefully listens and has made accommodations in order for me to save some money, since all of my treatment with her is out-of-pocket, as is much of the lab work. Their office is now called the Center for Complex Diseases.

    It seems that all of the recent cases I know of rituximab from that office includes IVIG treatment. So, their protocol is possibly different from how some of the early experiences with it. I know in my case, we are waiting for the Fluge & Mella phase III clinical trial to be published before considering it.
     
    Binkie4, Hanna, bspg and 5 others like this.
  13. ivorin

    ivorin Senior Member

    Messages:
    133
    Likes:
    322
    Thanks so much for your reply, it's very much encouraging. Best of luck going onwards!
     
    Diwi9 and Gingergrrl like this.
  14. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    1,426
    Likes:
    440
    US healthcare is $$$$ without insurance. And treatment is still a fishing trip for many of us.. I have thought about moving to India .....where healthcare is cheap.....if only I could find someone who would work with a US CFS specialist.
     
    manasi12 and ivorin like this.
  15. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,561
    Likes:
    24,695
    USA
    @ivorin I am a patient of Dr. K and honestly feel that he has given me my life back (even though I still have a long way to go). But I have US health insurance and could not have paid for my ongoing treatment (high dose IVIG & Rituximab) without it. I do not know if you could pay for or access his treatment recommendations in Croatia.

    I have seen him since 2014 and we initially tried two different anti-virals (which did not help me) but I understand why we tried them and do not regret it. But there was a lot of testing and information gathering until we discovered what was really going on in my case and each patient is so complex and unique.

    I have never met Dr. Chheda but have only heard great things about her.
     
  16. ivorin

    ivorin Senior Member

    Messages:
    133
    Likes:
    322
    @Gingergrrl I've read your story before, it is one of the most interesting and hopeful ones on PR, I am glad you finally found that the antineuronal issues were the big problem and are getting the right treatment!

    For me, finding out what lies beneath my sudden decline after 6 years of mild ME would be a life-saver, literally. I have a strong feeling that if anyone can figure it out, it would be Dr. Kaufman. As for the costs, we will see, all my possessions are worth very little if I die, I am selling most of what I own to fund the healing war :)
     
  17. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,561
    Likes:
    24,695
    USA
    Thanks and I can't say that the anti-neuronal (or paraneoplastic) autoantibody was "the" cause but it was a missing link that led to further autoantibody testing and the discovery that by early 2016, I was in this state of "autoimmune chaos" that my doctor felt was behind my worst symptoms (POTS, muscle weakness, breathing weakness, etc).

    It also was very valuable info b/c the calcium autoantibody can correlate with small cell lung cancer and Dr. K was the only doctor who took this seriously and ordered annual lung cat scan for me (until we are certain I am in the clear which so far, I am). He also has coordinated my treatments with my MCAS doctor (who is also an amazing doctor and is local) so I have not had to travel up to his office for the treatments. But this was after I was an established patient and have been up to his office at least five times. Now we communicate via phone consults and e-mail.

    After having lost everything I owned to mold in 2015, I can now tell you that material possessions mean nothing to me (even though there were some items I was sad to lose). I truly believe that Dr. K will do everything humanly possible to help you. I recently referred a friend to him who has more classic symptoms of ME/CFS and Fibro/pain. She was so afraid that he would tell her that she is "beyond help" and that "there was nothing he could do" and I could honestly promise her that this would not occur. He can't solve a disease that currently has no bio-marker or go beyond what currently exists in science, but he will never give up on a complex patient.

    Another thing that is very unique about him IMO is that he will look at each patient as an individual. He will do certain standard tests for everyone but then if someone has Lyme, MCAS, POTS, EDS, etc, or even something very rare and obscure, he will treat what he sees is there vs. trying to plug you into an existing formula. And if he doesn't know something, he will say, "I don't know" and there is no ego involved like with many other doctors that I have seen.

    Hope this helps.
     
  18. ivorin

    ivorin Senior Member

    Messages:
    133
    Likes:
    322
    @Gingergrrl it's a deal-clencher, I'm so glad you wrote your experience of Dr. K, it makes me much easier in my decision as I really do think I'm no longer a clear-cut case of ME that I was for years.

    On a sidenote, I sent Amy Poahl's hypothesis paper to him a few days ago and he actually read it and thanked me for it and was overjoyed about having references for some of the stuff he said he was preaching for a while now. I can tell you right now, KDM wouldn't even have opened my mail - no joke.
     
    Forçe e Honra, Grigor, Mary and 4 others like this.
  19. Learner1

    Learner1 Professional Patient

    Messages:
    1,209
    Likes:
    2,008
    Pacific Northwest
    I am also a patient of Dr K's. He is very knowledgeable and on top of all the latest research. He was able to figure out exactly what's the matter with me in a careful, thoughtful approach and has added things to my treatment plan that in benefiting from. I'd say his expertise is in untangling immune system dysfunction. He's very dedicated and caring.

    I also have an excellent naturopathic doctor in my home city who is giving me mitochondrial cocktail, methylation, mineral and amino IVs and managing an extensive hormone and supplement program and oxygen therapies.

    I have been very ill, but function much better than I would otherwise due to these treatments, and have improved and think I'm on the right track to become well.

    I saw Dr K 3 times in California and have phone appointments as needed. My insurance is covering almost all of his labs and treatment, which, if not insured, would likely have cost over $50,000 over the past 5 months if uninsured and I anticipate it will be another $150,000 for treatment if I were uninsured. I pay out of pocket for visits, but they're worth it.

    I've heard wonderful things about Dr. Chedda, too.
     
  20. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,561
    Likes:
    24,695
    USA
    I'm so glad that I could help! My main concerns are how you will pay for testing and treatment without US health insurance and if you will be able to access meds & treatment in Croatia (unless you are planning to move to the US for the next few years)?

    Why do you think that you are no longer a clear-cut case of ME like you did for years? This is what happened to me so I am very curious to hear more about your case! Feel free to reply by PM if you don't want to share publicly.

    He has read everything that I have ever sent him (and vice versa) and it's a true team-work approach.

    I absolutely agree with @Learner1 on this.
     
    Forçe e Honra and ivorin like this.

See more popular forum discussions.

Share This Page