Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

Just had first appt with Dr. Kaufman

Discussion in 'ME/CFS Doctors' started by bspg, Jul 18, 2017.

  1. bspg

    bspg Plant Queen

    Messages:
    437
    Likes:
    1,540
    USA
    **The original post has been edited for brevity

    Whew, what a whirlwind. I just got home from a 3 day trip to CA to see Dr. Kaufman and I am EXHAUSTED! Thank god for my wheelchair and my amazing, loving boyfriend who pushed me around and took care of so many things. :heart: I would not have been able to do this trip without him. He is my rock!

    I'm too tired to do a full synopsis but he spent a lot of time with me and went over my entire history. My diagnoses (in addition to ME/CFS) were: persistent EBV infection w/positive IgM, compound heterozygous MTHFR, strongly positive SIBO, and probable MCAS and dysautonomia (need more testing).

    He'd like me to have the Cell Trend test, more thorough tick disease testing, and a saliva cortisol test (if/when I can afford all those things).

    I'm going to start antivirals, antibiotics, and a few other things soon. It's all pretty overwhelming but SO nice to finally have an experienced doctor and the chance to get some help! :star:

    I'm not sure when I will have my next appt. I'm poor so it'll probably be awhile. I really liked Dr. Kaufman and was very happy with my experience at the clinic. It sure was a nice change from the ¯\_(ツ)_/¯ and exercise/antidepressant recommendations I've had over the last two years!!

    ETA: I'm happy to answer questions about my experience/trip if anyone is curious.
     
    Last edited: Jul 24, 2017
    fireflymd, justy, zzz and 23 others like this.
  2. deleder2k

    deleder2k Senior Member

    Messages:
    1,121
    Likes:
    4,845
    Interesting. Regarding the Cell Trend test I don't know why it would be relevant clinically. If you're poor then ask Kaufman what it will show, and whether he bases treatment from the results given by the test
     
    Basilico likes this.
  3. bspg

    bspg Plant Queen

    Messages:
    437
    Likes:
    1,540
    USA
    I recorded our appt. (my memory is horrible) and just listened to it all the way through again. He thinks that autoimmunity is actually a strong driver of my illness, not just a potential problem in the future (I misunderstood that the first time). The cell trend test would help confirm this. The results would help him guide my treatment.
     
    Last edited: Jul 18, 2017
  4. Learner1

    Learner1 Professional Patient

    Messages:
    1,206
    Likes:
    2,002
    Pacific Northwest
    My experience with Dr K was similar. Even though I had a lot of good lab work going to him, the lab work he ran, including the Cell Trend test, uncovered the depth of what's wrong with me, and focused my treatment in an entirely new direction.

    I saw him twice in California, and then by phone appointments and email since. He has been good about supporting and coordinating with the care I'm getting from doctors here at home and his recommendations have been very methodical and made sense. It cost money to see him, but it was well worth it in terms of accelerating my treatment.
     
    pattismith, justy, Binkie4 and 8 others like this.
  5. Rossy191276

    Rossy191276

    Messages:
    77
    Likes:
    248
    Brisbane, Australia
    Can I ask what your Cell Trend test results were and what treatment you are doing as a result? My tests have just been sent off but within phoenix rising there seems to be different views in if these results should be used to indicate treatment at this stage.... Thanks!
     
    justy, Aroa and Hutan like this.
  6. echobravo

    echobravo Keep searching, the answer is out there

    Messages:
    85
    Likes:
    153
    Norway
    @Learner1 What treatment did he suggest and what improvements did you see?
     
  7. Learner1

    Learner1 Professional Patient

    Messages:
    1,206
    Likes:
    2,002
    Pacific Northwest
    He put me on valgancyclovir and IVIG. I'm a month into the process. My sickness symptoms have diminished, lymph nodes less swollen. He said it would be a project for awhile.
     
    justy, brooke, Aroa and 4 others like this.
  8. Aroa

    Aroa

    Messages:
    93
    Likes:
    491
    Spain
    Thank you all for sharing your experiences.

    Could any of you who went through the Cell Trend Test tell us which specific antibodies were you tested for ? There are so many on their web
     
    Sancar likes this.
  9. Learner1

    Learner1 Professional Patient

    Messages:
    1,206
    Likes:
    2,002
    Pacific Northwest
    I had this one done:

    http://www.celltrend.de/cfs-diagnostics.html
     
    Little Bluestem, Aroa and bspg like this.
  10. bspg

    bspg Plant Queen

    Messages:
    437
    Likes:
    1,540
    USA
    @Learner1 do you mind if I PM you to discuss your experience with Dr. K?
     
  11. Daffodil

    Daffodil Senior Member

    Messages:
    4,921
    Likes:
    4,707
    From things my friend has said about Dr. K, it seems like he really cares about his patients.
     
    Gingergrrl and bspg like this.
  12. bspg

    bspg Plant Queen

    Messages:
    437
    Likes:
    1,540
    USA
    I was really impressed with his thoroughness and what I believe to be a true desire to help. :heart:

    Most of the doctors I've seen are hurried and trying to get through the appt with the smallest amount of work. This was definitely not the case with Dr. Kaufman.
     
    Little Bluestem and Gingergrrl like this.
  13. Daffodil

    Daffodil Senior Member

    Messages:
    4,921
    Likes:
    4,707
    yes..my friend needed an urgent appointment because he was so sick and Dr. K squeezed him in and even called him on the phone out of concern. I was very impressed. Said he would go out of his way to find out how to accommodate a treatment my friend needed. Said he would push to try to get insurance to pay for something etc. Dr. K must be newish to this disease because the older docs are all jaded, bitter and mean lol
     
    MEMum, Gingergrrl and bspg like this.
  14. bspg

    bspg Plant Queen

    Messages:
    437
    Likes:
    1,540
    USA
    I'm not sure how long he's been treating ME/CFS patients but he worked with HIV and AIDS patients for years prior to ME/CFS. I think this is partly why he is so compassionate towards PWME -- he knows how sick they are.
     
    MEMum, Little Bluestem and Gingergrrl like this.
  15. brooke

    brooke

    Messages:
    26
    Likes:
    32
    @bspg @Learner1
    Did either of you travel to see Dr K? I will be travelling and therefore will need to pay for all tests out of pocket. I'm curious to know the ballpark for how much this will cost.
     
  16. perrier

    perrier Senior Member

    Messages:
    522
    Likes:
    905
    What are the differences between Dr Gordon and Dr Kaufman. Anyone know?

    And is it still possible get an audience with Dr Kaufman?
     
    brooke likes this.
  17. Learner1

    Learner1 Professional Patient

    Messages:
    1,206
    Likes:
    2,002
    Pacific Northwest
    Yes, I live about 700 miles away, so I was able to spend a long day traveling to see him for a midday appointment both times. After that, I've been able to have phone appointments.

    Though he was an out of network doctor, all the tests he ran except the CellTrend (which was done in Germany) were covered by my insurance. They went to LabCorp and Quest and Dr K was sensitive to cost. He also battled my insurance to get me IVIG.
     
    Izola, Gingergrrl and MEMum like this.
  18. brooke

    brooke

    Messages:
    26
    Likes:
    32
    Thanks @Learner1

    Did you have to travel back home in order for the labs to be covered or did insurance pay even though you went to SonoraQuest in a different state?
     
  19. Learner1

    Learner1 Professional Patient

    Messages:
    1,206
    Likes:
    2,002
    Pacific Northwest
    I haven't seen Dr. Gordon but know s lot about him. He seems to be a functional medicine doctor, similar to what my naturopathic doctor does. The 2 doctors together have overlapping skills, but they have deeper knowledge in different areas.

    Things my functional med doc does (and likely what Dr. Gordon can do):

    - looking at the whole patient and ensuring the body is coping well with Dr. K's treatment
    - lab testing for nutrients, hormones, gut health, food allergies, infections, etc.
    - customizing a hormone program
    - customizing an oral and IV nutrient program, based on lab work and genetic SNPs
    - prescribing drugs, hormones, probiotics, nutrients and botanicals, like mushrooms, curcumin, artesunate, berberine, samento, banderol, etc.
    - oxygen therapies

    Things Dr. K is taking the lead on:

    - getting to the bottom of infections, HPA axis issues, immune dysfunction and autoimmune issues
    - devising the most advanced treatment plan available to address infections and immune issues, using up to the minute research and his copious experience with ME/CFS patients
    - managing extraordinarily ill patients.

    We are complex patienrs. Having more than one smart doctor on your side can be helpful, though you must manage the relationships wisely to get the most out of them and not waste anyone's time or your money.
     
    CedarHome, pattismith and brooke like this.
  20. Learner1

    Learner1 Professional Patient

    Messages:
    1,206
    Likes:
    2,002
    Pacific Northwest
    I have a standard BSBS plan, not based in CA or the state I live. I meant Quest Diagnostics - not sure about Sonora Quest. The blood was drawn in Mountain View. I've had other follow up labs drawn here at home.

    Dr K has told me what he wanted done and either sent me a LabCorp requisition to take to the lab, or my doctor here at home was happy to order the tests. Given my treatment protocol and drugs in on, I have labs done every 2-3 weeks to monitor my blood and liver.

    Even though it cost me about $2500 between travel and appointments, it has made a dramatic difference in my treatment, and where I was treading water before having made some good progress, I believe that the path I'm on with Dr K, along with the local functional medicine support, is giving me the best shot at being cured.
     

See more popular forum discussions.

Share This Page