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Which doc? Kaufman/ Chheda or Montoya?

Discussion in 'ME/CFS Doctors' started by HeleneG, Jun 10, 2018.

  1. HeleneG

    HeleneG

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    I haven't seen any doctor who understands ME/CFS but I live in Berkeley. I'm trying to decide who best to see. I'm on the wait list for Dr Montoya's clinic for 6 months but it may be another year until I see someone. I was reading here about Dr. Kaufman and Dr. Chheda, and I'm wondering if it would be better to see one of them. What do you all think?
     
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  2. Diwi9

    Diwi9 Administrator

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    Dr. Chheda/Kaufman are great if you have POTS and MCAS with ME/CFS. I would also see what your insurance covers. Many patients with Chheda/Kaufman are private pay. Labs at Stanford are very expensive if your insurance will not cover it. Both places charge about $800 per appointment.
     
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  3. HeleneG

    HeleneG

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    That's a good point. I do have POTS and MCAS but I have Medicare + a great supplemental. Stanford accepts these, but Kaufman does not. I think I could get in to see Chheda sooner than someone in Montoya's team. So I have a lot to consider. I think I wouldn't have to pay for Montoya, so that's a consideration, but not the only consideration. Thanks Diwi.
     
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  4. StarChild56

    StarChild56 Senior Member

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    I just wanted to add that I've had a lot of appointments with Dr. Kaufman and none of them were near $800. I have Medicare as my secondary insurance, and all my labs have been covered using my primary and Medicare. I think his appointments cap at about $580.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    I agree and my appt with him last week (which was quite detailed) was $550. All of the labs he ordered were covered by insurance and I continue with two expensive treatments that (for now) are covered by insurance.
     
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  6. StarChild56

    StarChild56 Senior Member

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    Yes I think my last appointment was $580 but we spent a long time (detailed as you said, @Gingergrrl). Dr. K has stated that my case is quite "complex".

    Some of my labs are very expensive - $5K for the big ones (so far, 3 times) but my primary insurance has an agreement with the lab so those bills go down to only $599 and my primary pays most of that, then the remainder of the bills are sent to Medicare as my secondary. Both my primary and Medicare have paid for almost all of my lab costs (there is one test that Medicare won't cover but the lab tells me that before hand and I believe it is $120).

    Edited for clarity. Edited again because what I wrote did not make sense and sounded bad.
     
    Last edited: Jun 10, 2018
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @HeleneG There is no right or wrong answer but I would take all factors into account (i.e. How soon can you get an appt, do the doctors offer the types of testing and treatment that you are seeking, do they take your insurance, travel costs, etc).

    I forgot to add in my post above that when I went to Stanford in 2016 (the Autonomic Disorders Clinic, not the ME/CFS Clinic which I have never been to), they told me on the phone that they took my insurance and also led me to believe this on the day of testing. Then they later told me that they did not accept my insurance at all and I was responsible for everything which was several thousand dollars.

    At that time, I only had one insurance (vs. now I have a primary and secondary). They really deceived me and said I should have confirmed with my insurance ahead of time (but when they told me on the phone that they accepted my insurance, I trusted them and did not check). Am just posting this as a cautionary tale.
     
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  8. HeleneG

    HeleneG

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    That makes the decision more balanced. Thanks F.
     
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  9. HeleneG

    HeleneG

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    Good to know.
     
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  10. HeleneG

    HeleneG

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    It's all so complicated. This is all very helpful. I guess I should be happy that I don't have to come here from Europe, though the drive from Berkeley to Palo Alto will kill me.
     
  11. HeleneG

    HeleneG

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    Has Kaufman helped you?
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    Is there a family member or friend who can drive you from Berkeley to Palo Alto? Drs. Kaufman and Chheda are in Mountainview (but pretty close to Palo Alto).

    100% Yes.
     
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  13. StarChild56

    StarChild56 Senior Member

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    I am about 2.5 hours from Dr. Kaufman and I've seen him in the office 2x but have had 3 or 4 phone visits. The trip is way too hard on me to do that - it can be 6 hours round trip driving and we spend a long time in our office visits. He is so thorough, patient and knowledgeable. As well as being so kind.
     
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  14. Diwi9

    Diwi9 Administrator

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    Whoops, yes...appointment was $550...I paid supplemental last time for a SIBO kit on top of appointment.
     
  15. HeleneG

    HeleneG

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    I probably don't have anyone to drive me, but I could drive down the day before and stay the night at a friends.
     
  16. ebethc

    ebethc Senior Member

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    @HeleneG

    I believe that Montoya does not see patients anymore...He has nurse practitioners who see patients. When I did research a couple of years ago on CFS docs, it was $925 to go to Montoya's clinic and be seen by a nurse practitioner, w appts made many months in advance. I got the impression that it was not very individualized.. you get treatment A, B or C... which may be fine for some, but for that much money I want Dr "Immune System Savant"! Just my opinion, based on asking ppl and calling the clinic ... I never went to Montoya's clinic...

    Dr K sees you 2x to kick off your care..
    • 1st appt is ~ $525 (2 yrs ago)
    • take ordered tests
    • 2nd appt a couple of weeks later (~$525 2yrs ago..) to review tests & make a treatment plan
    So, you actually need to plan on ~$1050 cash upfront (your insurance will likely reimburse you, but check if you can.. you have to put up the money first b/c it's a private clinic, ie, not part of a network w all the administrative services)... I had great insurance, but I could not front the money (I'm sure I would have been reimbursed), so I missed out on the window of time I could have seen him.. Now I'm more broke than ever, so my dream of seeing Dr K is a distant one... I do think that you would get individualized care from a very skilled doctor... The ppl on this board that I PM'ed all had SOME symptoms that overlapped w mine, but some had very different problems, and most ppl raved about him.. So, I think he provides very individualized care, which was one of the things that I was looking for... I believe that only 1 or 2 ppl said he did nothing for them, which was a good result for the # of ppl I "interviewed"... Also, I've read good things about Chheda.. I believe the same approach as Kaufman

    I contacted Dr Bateman's clinic at the same time, and she had a long wait list and has specific requirements for who she sees... I believe that her goal is to see only the patients that are the "sickest" (by her definition).. plus, I would have to get on a plane to see her, so she was a long shot from the beginning for me personally... I've always been surprised that more ppl don't talk about her on this board, b/c I believe that she's a good doc... I don't have a lot of info, though, so this is just a guess, based on what I've read and seen (videos of her speaking) and her relationships w good researchers
     
  17. HeleneG

    HeleneG

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    Thanks for your detailed and helpful reply. I think I will try Kaufman, though he's not accepting patients anymore so I will probably see Dr. Chheda. On their website they say they don't accept Medicare so my great insurance will probably not cover it. It's a lot of money and a lot of driving but it would be worth it if I improve. Most people I've heard from did not get much help from Montoya's clinic, so I'll probably call Chheda today and see what happens.
     
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  18. HeleneG

    HeleneG

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    I just called Dr. Chheda's office and the fee was $800 each for the first 2 visits. I'm just letting that sink in. It seems excessive to me, but if I get help, it will be worth it.

    us
     
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  19. ebethc

    ebethc Senior Member

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    wow... so all subsequent visits are $800, too? just... wow..

    EDIT: one thing that I did b/c I couldn't afford the money upfront is that I took as many tests that I could, based on the tests that I knew he ordered... I had good insurance, and a helpful primary care doc, so she helped.... For example, the SIBO test is pretty standard under Dr K's care b/c most CFSer's have gut problems (I'm assuming that you do, but this may not be true..). Fixing SIBO is not necessarily something you need a doc for, and it's a long or long-ish term fix... You could get the test and potentially treat yourself before you see Dr Chheda... The gut problems are a pain, and not something a doc is going to fix overnight... It's possible that you can move forward before before seeing a doctor..
     
    Last edited: Jun 11, 2018
  20. StarChild56

    StarChild56 Senior Member

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    No, they are not. None of my follow up visits have been near $800.

    I'm guessing the $800 is including testing (SIBO is close to $200 and that is one that is often given during 1st/2nd visit) of some sort.
     
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