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My Experience With Dr. Kaufman at the Open Medicine Institute

Discussion in 'ME/CFS Doctors' started by jeff_w, Aug 20, 2014.

  1. Learner1

    Learner1 Forum Support Assistant

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    I am also a patient of Dr. Kaufman's and have been seeing him for 9 months. I live in another state, saw him twice in person a month apart, have had a few phone appointments, and saw him again in person last week.

    I went to him with a detailed health history and extensive lab work. He took 24 tubes of blood the first time, after discussing my history and examining me. He honed in on my problems and has taken me through 3 phases of treatment which have greatly improved my functioning, and he has a plan for where I need to go.

    He has emailed labs for me to get done at home through LabCorp and Quest Diagnostics, including some exotic ones that were subcontracted out by LabCorp and Quest. He is excellent at ICD10 coding to get diagnostics and treatment covered by insurance.

    I believe I am on the way to recovering. The past 2 weeks, I've had the best days in the past 3 years, with active physical activity, and though I've had ups and downs, I've had continual forward progress.

    He is humble, thoughtful, curious, and open minded and is experienced enough to cover a lot of ground quickly. He reached out to some experts to consult about my case, which was helpful.

    The only area he's not as expert in, though he respects its role, is in nutrition. I have a functional medicine naturopathic doctor who has helped me greatly with that piece and have better care with the combination of both rather than just one or the other.
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    Jeff is a friend of mine and he recently had surgery so it might take him a while to see your post and reply. I don't think he would mind me replying to you here, b/c he talked about his upcoming surgery in some other threads, but I will leave it at that and let him reply to your other questions. I can tell you though that both he and I have never had a better doctor or advocate than Dr. Kaufman in our life and recommend him very highly.
     
  3. pattismith

    pattismith Senior Member

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    Let's hope Jeff will be soon able to update how went his surgery. I wish he doesn't suffer too much.
     
  4. perrier

    perrier Senior Member

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    Does Dr Kaufman have hospital privileges? Would he be able to prescribe a pic line at a local hospital?
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    Dr. K does not have hospital privileges b/c he would end up spending all of his time being a hospitalist vs. treating patients in his clinic. However, he was able to get me admitted to a hospital in 2015 by working with a colleague with hospital privileges and once I was in, he was very involved (even though he could not admit me and was not the treating doctor).

    Jeff had the surgery and I am sure he will update PR once he is able. And you are correct that Dr. Kaufman and Dr. Chheda (and several other staff) left OMI and formed a new clinic called "Center for Complex Diseases". It is still on the same street, just a few doors down, in Mountainview, CA. I copied the link and hoping it works (not much on it but it has the ph# and address, etc).

    http://centerforcomplexdiseases.business.site/
     
  6. pibee

    pibee Senior Member

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    That's excellent! I am very glad for you!


    I never read (much, if anything) on Dr Kaufman's approach to mold illness and metals? Is he expert in this too, does he treat it?
    Also, Lyme, I read he is not that into Lyme, meaning, doesnt agree much with ILADS? Truth?
    I know he is big on bartonella.
    I did 2 years of bartonella treatment, 2+ years of lyme, I've gotten only worse (with ME, mental symptoms maybe 40% better from antibiotics)... even though I herxed so much and so obviously, and then stopped, so it's quite certain I had those bugs (as much as you can be certain in 2018 with any of these illnesses). So I really dont know what is next he could do.
    I repsond very strongly and well to my MCAS self-treatment, which is ranitidine+loratadine+quercetin. And some improvement from antivirals, which unfortunately I had to stop because I dont have rx. But still way way worse than before antibiotics for lyme & bartonella.
    I am quite broke because I live in 3rd world country, so I dont know if paying Dr K is worth it, but I have to have a doctor because I cant self-treat, it gives me many legal and family problems.... so many complications

    From what is my impression because of 8/9 positivie CellTrend I have a feeling it comes down to - will I or wont I do Rituximab.
    All else i have covered (if you ignore rx issue) or I dont need to travel to the States for, like antiviral, MCAS, mold, metals.. or antibiotics. :/

    I am not sure in 2018 we can even say what's wrong with us/me. Ii am very lost what to do.


    BTW, can anyone tell me what's the price of first visit in person with Dr Kaufman, and how long it lasts?
     
  7. RUkiddingME

    RUkiddingME Senior Member

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    Thanks for the info!! If I were to see him again does he work out of both clinics?
     
    Gingergrrl likes this.
  8. Gingergrrl

    Gingergrrl Senior Member

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    He only sees patients at his new clinic, "Center for Complex Diseases", and no longer sees patients at OMI. However, if you want to switch, OMI will transfer your entire medical record to his new clinic which is what I did. Dr. Kogelnik is still at OMI but Dr. K and Dr. Chheda went to the new clinic.
     
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  9. Dakota15

    Dakota15 Senior Member

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    Just wanted to add on to this conversation - I know Dr. Kaufman was previously at OMI, does anyone have experience at the new center (Center for Complex Diseases) with Dr. Kaufman? I scrolled through some of the pages on this thread but 32 was a lot to catch up on (and seeing that it started with Dr. Kaufman when he was at OMI)!

    Appreciate any help and input - thank you.

    Cheers,

    Dakota
     
  10. Learner1

    Learner1 Forum Support Assistant

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    Yes. My first appointment was at OMI..the second and subsequent ones were at the new clinic. No problems, same care.
     
    Gingergrrl likes this.
  11. XenForo

    XenForo

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    I don't have experience with Dr. Kaufman, but I go to the Center for Complex Diseases. So far, I have had great success with my doc at CCD. She has been able to help me tremendously, and presents as nothing short of super competent and professional. I am optimistic about my future because of her. It was a bit of a strain on me to travel down there and back and of course I crashed pretty bad after I got home, but it seems very worth it. I have to mention that CCD is very expensive and they don't take insurance on most things. But like I say, it's more than worth it for me. In my case, CCD has been able to help me more than Stanford, (although Stanford clinic has helped me as well.) I hope that helps!
     
  12. ebethc

    ebethc Senior Member

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    what do you have to pay upfront for, besides office visits? aren't all lab tests covered by insurance (depending on your insurance, of course)
     
  13. Dakota15

    Dakota15 Senior Member

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    Thank you very much @XenForo! I presume you are referring to Dr. Chheda. I actually have an appointment with Dr. Chheda in a few weeks...do you mind if i DM you with some questions?

    Best,

    Dakota
     
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  14. XenForo

    XenForo

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    Not at all. I think this is a public forum, so I'll try to return my doc's professionalism by trying to be professional toward her and keeping info about her off the public net (unless she okays it.) So, yes DM is the way to go for questions about specific doctors, for me at least.
     
    Gingergrrl likes this.
  15. Dakota15

    Dakota15 Senior Member

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    I just tried to DM you but it notified me that "I'm not allowed to start a conversation with you"...apologies as I haven't experienced that before.

    If you know why that may be or if anyone else may know please let me know.

    Thanks
     
  16. Learner1

    Learner1 Forum Support Assistant

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    I looked, but don't see a reason. But, I will check with the other forum assistants. @XenForo can you start a conversation with @Dakota15 ?
     
  17. aquariusgirl

    aquariusgirl Senior Member

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  18. pibee

    pibee Senior Member

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    @aquariusgirl , you mixed up my post but i guess i understood whats question

    Besides ME/CFS, which was mild, I had psychiatric symptoms from 'lyme', and neuropathies.

    Neuropathies and psychiatric symptoms got extremely better w antibiotics, but ME not (even got worse in combo with some other triggers, wouldnt blame antibiotics).
    I had short period on IV rocephine when my ME was EXTREMELY better, my veins could take only 20 days of IV, when they stopped it, i had big gastritis, and then had severe worsening of ME within days with all the typical symptoms (while before was quite mild).

    Before IV Rocephine my Elispot test for Lyme was 8 ( < 2 range) in 2015, then in June 2017 was 5 , in August I received IV Rocephine,and then after (Oct 2017) it was 0 ! first time since I tested.

    But I was worse than ever with ME. I mean completely new picture of illness, things I couldnt even imagine but so often mentioned for ME... anyway... one of my medically smart friends told me in some skin disorders how candida and bacteria can compete for biotin, so if oyu get rid of bacteira, candida grows, ... I wonder if this might be what happened for me after "erradicating" bacteria, that viruses somehow got 'space'.
    Well, this is just guessing, more realistic cause would be abx weakening the immunity and giving space to viruses to attack.. :-/

    So...... short version of my answer: Have no clue what's happening! :rofl:
     
    Last edited: Apr 11, 2018
    aquariusgirl likes this.
  19. XenForo

    XenForo

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    Just checked my security settings and they are set to only allow conversations from "people I follow," which is weird. I don't remember changing it. I changed it back to allow conversations from all "members," so hopefully that's solved.
     
    Learner1 and Sushi like this.
  20. perrier

    perrier Senior Member

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    Dear Pibee,

    I'm completely unsettled by your post. I am so sorry to hear your story. I do hope that the doctors are helping you.
     
    pibee and Learner1 like this.

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