1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Upcoming appt at Open Medicine Institute!

Discussion in 'ME/CFS Doctors' started by Gingergrrl, Jun 27, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    1,163
    Likes:
    1,820
    USA
    I wanted to let everyone know that I got an appt with Dr. Kaufman at the Open Medicine Institute in Mountainview for mid-July!!! I reached his office easily and expected at least a six month wait but got an appt for two weeks away!

    They are very reasonably priced for a CFS specialist and will bill my insurance for all the lab work. My husband will drive us the weekend before the appt so we are not rushed and it works out perfectly b/c he has business meetings in the same general area (but not on the day of my appt so he can be with me for the whole thing.)

    I cannot thank everyone on the board enough for helping me to find this doctor and clinic and I never would have found them on my own. Several of you have PM'd me and I will be responding to everyone as soon as I can. I hope it is okay to publicly thank people (if not, please delete by moderator) but I want to especially thank @NK17, @Sushi, and @Ruthie24 for all of the detailed info. If I forgot anyone (due to brain fog) please forgive me.

    This board has been a God-send to me and after attempting to reach four different CFS specialists for appts, I know that this is the one that is meant to be. I am confident that they can run all the bloodwork and tests that I need (viruses, immune system, etc) and know how to interpret them in ways that my local doctors cannot. After the appt, I will give the board a full report of my experience!
    WillowJ, xchocoholic, JT1024 and 14 others like this.
  2. Xhale19991

    Xhale19991

    Messages:
    77
    Likes:
    45
    I am a patient of his and he has been fantastic.

    Hope he helps you out.
    Marianarchy, merylg and Gingergrrl like this.
  3. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    1,163
    Likes:
    1,820
    USA
    @Xhale19991 Thanks for letting me know and I have consistently been hearing good things about him. I am so hopeful that he will be able to help me and shed some light on my situation.
  4. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,240
    USA
    @Gingergrrl43
    Congratulations! I know you've been eager for this. Good luck!
    Gingergrrl likes this.
  5. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    1,163
    Likes:
    1,820
    USA
    Thanks and I really appreciate the good wishes!
  6. Kina

    Kina Moderation Team Lead

    Messages:
    5,264
    Likes:
    3,622
    Ontario, Canada
  7. NK17

    NK17 Senior Member

    Messages:
    349
    Likes:
    686
    Very happy for you @Gingergrrl43. This is a first important step toward a targeted treatment and a good start on the long road to recovery.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,616
    Likes:
    5,439
    Albuquerque
    @Gingergrrl43

    So glad your search took you to such a good place. :thumbsup: Keep us posted!

    Sushi
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    1,163
    Likes:
    1,820
    USA
    Thanks again to all of you for your support in this. Hope you all have a good night (or day depending where you are located!)
  10. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    1,163
    Likes:
    1,820
    USA
    @Sushi, @NK17, @SOC, @SDSue, @AndyPandy, @SeaShell, @Ruthie24, @WillowJ, @Hanna, @Valentijn @heapsreal @taniaaust1 and everyone else who has been so incredibly supportive of me, I wanted to let you know that we are driving up tomorrow for my appt at OMI. I am feeling really hopeful about it and about to start packing for the road trip! I can't thank you guys enough for helping me find OMI and for all the feedback as I made my choice (and all the support in general.) This board has been like my life-line this past month and any improvement that I (hope) to receive medically, I owe it all to you guys!
  11. SDSue

    SDSue Florida

    Messages:
    435
    Likes:
    885
    Florida
    Can't wait to hear how it goes :)
    Gingergrrl likes this.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,616
    Likes:
    5,439
    Albuquerque
    @Gingergrrl43 Very best wishes!

    We'll be eager to heal how it goes. :)

    Sushi
    Ruthie24 and Gingergrrl like this.
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    1,163
    Likes:
    1,820
    USA
    @Sushi I love that you used the word "heal" instead of "hear" even if it was just a typo or Freudian slip and hoping it is prophetic...
    Nielk, Little Bluestem, justy and 2 others like this.
  14. AndyPandy

    AndyPandy Making the most of it

    Messages:
    206
    Likes:
    448
    Australia
    That's great @Gingergrrl43! Looking forward to hearing about your experiences.
    Gingergrrl likes this.
  15. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    1,163
    Likes:
    1,820
    USA
    We just made it to the hotel and the drive up here was pretty smooth. My appt is tomorrow and I feel (cautiously) very optimistic. I will use this thread to keep you guys posted.
    Hanna, justy, Iquitos and 5 others like this.
  16. NK17

    NK17 Senior Member

    Messages:
    349
    Likes:
    686
    I'm very happy to hear that your ride was smooth and you've reached Mt.V safely ;)

    I'll be thinking about you tomorrow, although I know you'll be in good hands with Dr. Kaufman.
    Ruthie24 and Gingergrrl like this.
  17. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    1,163
    Likes:
    1,820
    USA
    My appt at OMI exceeded my expectations and Dr. Kaufman spent over two hours with me & my husband. He had clearly read all of the med records that I sent and took a detailed history, did an exam, and answered all my questions (which were pages long!)

    I would consider him both a genius and an angel and there is no doubt I my mind that he is going to help me get my life back. He said he hates the name CFS and he calls it "Viral Re-activation Disease caused by Immune Impairment."

    I gave a massive amount of blood including some tests he felt were relevant for my specific history. Here is what he tested me for:

    CBC metabolic panel
    Five different EBV tests
    CMV panel
    HHV-6 panel
    Lyme panel
    Mycoplasma pneumonia
    Parvovirus A&B
    Natural Killer Cells Functional Assay
    Vit D
    Lymphocyte Subset Panel
    Chlamydia Pneumonia
    HSV 1&2
    VZV Panel
    MTHFR
    Babesia & Bartonella
    ANA Choice Panel
    Rheumatoid Factor
    PT & PTT
    IGF-1
    IGF BP-3
    ASO
    IgG subclasses

    They take extra vials of blood for their CFS research, which I really wanted to do and gave consent for, but I was so weak at that point that we stopped and I am going to give the research blood next time. I have a follow-up appt in two weeks to go over the test results so my husband and I will be making another road trip!

    He wants to do a very specialized test to check my cortisol (in the future) and changed the dose & how I currently take the beta blocker. He had practical advice for my POTS/OI and we talked about my thyroid/Hashimotos, cardiac issues, etc.

    Treatment depends on what the results show but his instinct was that EBV and the herpes family of viruses are behind my problems. He said I do not have the symptoms of Lyme but we did a test anyway to be sure.

    His treatment of choice was Valcyte but given how sensitive I am to meds and that I have never taken any anti virals, he thought valtrex or famvir were also possibilities (again depending what the results show.)

    He also said it was fine to stay on all my current supplements until we get the results. He said they can do one or two day CPET testing but felt it could make me worse right now unless needed for disability.

    I know I am leaving a lot out as my mind is spinning right now. There was a family who had come to OMI from Norway which made our drive from LA seem tiny and put it in perspective.

    I am so grateful to @NK17, @Ruthie24 and @Sushi who all helped me to find OMI. I recommend it highly to anyone who is able to see Dr Kaufman and I hope he does not mind I am typing this! I did not meet Dr Kogelnick b/c he was out of town.
  18. AndyPandy

    AndyPandy Making the most of it

    Messages:
    206
    Likes:
    448
    Australia
    That sounds great @Gingergrrl43! Hope this is the beginning of better health for you.
    merylg, justy and Gingergrrl like this.
  19. NK17

    NK17 Senior Member

    Messages:
    349
    Likes:
    686
    So happy for you @Gingergrrl43, thank you for your in depth report.

    I'm sure it was a long and intense day for you and your husband, but one full of promises.

    Take good care of yourself :hug:.
    merylg, justy and Gingergrrl like this.
  20. SDSue

    SDSue Florida

    Messages:
    435
    Likes:
    885
    Florida
    That all sounds so amazing! I'm happy you're on the right path :)
    Gingergrrl likes this.

See more popular forum discussions.

Share This Page