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.

My Experience With Dr. Kaufman at the Open Medicine Institute

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

  1. jeff_w

    jeff_w Senior Member

    Messages:
    295
    Likes:
    1,260
    In one word: Wonderful

    A Bit of Background on my Illness:

    I have had M.E. since August of 2011. It started out mild-to-moderate and stayed that way for nearly three years. I was able to make it through several years of full time graduate school while working part time as a research assistant--but this nearly killed me. I had no energy for a social life and spent all my free time sleeping.

    In January of 2014, I had to stop full time grad school and go only part time. I also had to cut my research assistant hours in half. By May of 2014, I began going downhill quickly. In June of 2014, I became non-functional, developed severe orthostatic intolerance, and have been bedridden ever since.

    Dr. Kaufman had me write and provide a chronological health history as well as provide labs prior to my appointment. I emailed all this info to his office a week before my appointment.

    The Start of the Appointment:

    When I arrived, he had clearly gone through my entire file prior to my arrival. He had me tell him my health history verbally, because, in his words, "people frequently have more to add. Plus, I can ask questions during the telling."

    He was very warm and personable! He also really understood how ill I am. When I had to recline after the first 10 minutes of the appointment, Dr. Kaufman didn't flinch. He said at one point, "You are very, very sick." This felt like a miracle in comparison to the years of disbelief by SO MANY doctors who insisted I was "a perfectly healthy young man."

    Pulse, Blood Pressure, ACTH Stimulation, and Blood Draw

    Dr. Kaufman took my pulse and blood pressure while sitting, standing, and lying down. He told me that I have "extremely severe POTS." He said the POTS is contributing to my fatigue and is making it impossible for me to sit or stand for any length of time. He also said that treating the POTS alone will result in significant improvement but is not the whole story.

    He then discussed my elevated viral titers from prior lab work. He said he still needed to test me for NK cell function as well as do some more viral titer investigation. So, his nurse drew VAST AMOUNTS of blood. I'm talking, 4 HUGE syringes of blood--these syringes held the volume of a large turkey baster.

    Then he injected me with ACTH to stimulate my adrenal glands and test their functioning. I was shocked to find that this injection made me feel significantly better. Not "cured" by any stretch, but much better!

    By the end of the appointment, after so much blood had been drawn, his nurse infused me with 2 liters of IV saline. This was a relief.

    Next Steps:

    Throughout the entire appointment, Dr. Kaufman was VERY open to questions and answered all of them. He was patient, knowledgeable, and kind. By the end of the appointment, he wrote me prescriptions for Propranolol (beta blocker) and Florinef (increases blood volume and replaces aldosterone). These will treat the POTS while we wait for the results of my bloodwork.

    He said the next step will very likely be antiviral treatment with Valcyte, which we will discuss at my followup appointment. I scheduled this for September 4th.

    In a Nutshell:

    If anyone lives in or near California, consider going to Dr. Kaufman if your health and finances will allow it. He's located in Mountain View, which is in Northern California (near San Jose). I only had a three week wait from the time I called his office to the time they scheduled me in for an appointment.

    I have hope now and feel like living again. I couldn't be happier.
     
    Last edited: Aug 21, 2014
    Sancar, lauluce, Cohen2 and 30 others like this.
  2. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,648
    Left Coast
    Just out of curiosity's sake. How much did this cost, if that's not being too personal. Ball Park is fine.
     
  3. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,594
    Likes:
    24,745
    USA
    @jeff_w I am also a patient of Dr K and my experience was virtually identical to yours (I do not mean that we have identical histories or medications) but that Dr. K was the most kind, patient and thorough doctor I have ever seen. I also now have hope that I will get better that I did not have prior to going to OMI.

    @minkeygirl The initial consult was $455 which I felt was very reasonable for a CFS specialist and less than the initial consult with my local endocrinogist! The lab work and medications are all covered by my insurance.

    I literally cannot say enough positive things about him. He coordinated my care with my cardiologist which led to me having a much needed test today.
     
    Sancar, Bessie, taniaaust1 and 10 others like this.
  4. jeff_w

    jeff_w Senior Member

    Messages:
    295
    Likes:
    1,260
    $455 for this initial appointment.

    $355 for the followup appointment.
     
    Gingergrrl likes this.
  5. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,648
    Left Coast
    Not bad really, but the labs have to add up with the amount of blood you say he took. Also gotta add travel and motels, if one could even get there.
     
  6. jeff_w

    jeff_w Senior Member

    Messages:
    295
    Likes:
    1,260
    The labs will be covered by my insurance.

    A friend drove me there, as I live only 3 hours from the OMI. I'm not well enough to make the trip and back in one day, so we did have to stay in a hotel. Hotels in the area are expensive. However, from what I've gathered, Dr. Kaufman is one of the least expensive specialists out there. This fact may offset travel costs.
     
  7. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,648
    Left Coast
    Many people who have to travel don't have insurance that covers them out of the area. Mine wouldn't, even if I could get there, which I can't.
     
  8. jeff_w

    jeff_w Senior Member

    Messages:
    295
    Likes:
    1,260
    @Gingergrrl Yes. He is the best doctor I have ever experienced seeing.
     
    Gingergrrl likes this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,889
    Likes:
    8,196
    australia (brisbane)
    physicsstudent13 and jeff_w like this.
  10. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,594
    Likes:
    24,745
    USA
    I actually live in LA so it was a 6-7 hour drive and my husband drove us and we did end up staying in a hotel for two nights. In my case, my insurance covered all the blood work/labs so we just paid the price of the consult. I can try to get the consult reimbursed by insurance but fully expecting it to be denied which is okay.

    @minkeygirl I am not sure about insurance refusing to pay for labs out of the area and in my case it was within the same state. But for someone interested, especially who is out of state, you could check with your insurance in advance to see what would be covered.

    I totally agree that when you add in the cost of gas and hotel, it is ruled out for many people. Luckily it was drivable for us so we did not have to pay for airfare. I had decided early on that I was prepared to spend my life savings trying to get better so I could literally say that I had tried everything humanly possible. I have a family and this was worth it to me to get my life back. I refused to allow my husband to pay one penny for my medical appts, hotel, gas, etc, b/c this is something that I feel I needed to do myself.
     
  11. jeff_w

    jeff_w Senior Member

    Messages:
    295
    Likes:
    1,260
    heapsreal likes this.
  12. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,337
    Likes:
    4,410
    London
    Jeff,

    Sounds like a great appointment to me. Can I ask about one of the things he did please. It's the ACTH injection. Did he say why he did this and the significance of your reaction?

    Reason I am asking is that I had a very good reaction to a short Synacthen test. Noticed that I felt much better after. It was early morning when my cortisol is low.
     
    jeff_w and Helen like this.
  13. DanME

    DanME Senior Member

    Messages:
    286
    Likes:
    1,301
    Hi Jeff,

    this sounds wonderful to me. I am really happy, you found your way to such a dedicated and professional doctor.

    I saw Dr. Kogelnik at the IIME 2014 Conference in London and was really impressed by all the research projects the OMI is doing. I had the impression, he really wants to change things for the better.

    I would love to go to a doctor and just feel perfectly treated and understood. (rather to feel like in a kafkaesk trial every time)

    After your post, I thought about flying to California for five minutes, but I wouldn't survive the flight and probably also the costs. :)

    Wish you all the best.
     
    oceiv, NK17, Gingergrrl and 1 other person like this.
  14. jeff_w

    jeff_w Senior Member

    Messages:
    295
    Likes:
    1,260
    @DanielBR Thank you. :)
     
    DanME likes this.
  15. jeff_w

    jeff_w Senior Member

    Messages:
    295
    Likes:
    1,260
    @ukxmrv He did the ACTH test to see if my adrenal glands are capable of functioning. Due to my symptoms, he said that it is likely my hypothalamus-pituitary-adrenal axis is not working properly. So, he first drew blood to get baseline levels of adrenal hormones (specifically cortisol and aldosterone).

    The injection of ACTH stimulates the adrenals to start working. So, 30 minutes after the injection, he drew more blood to see if those adrenal hormone levels had changed. If he finds through blood work that my adrenals produced hormones in response to the shot, then this means that the problem is with my hypothalamus-pituitary-adrenal axis and not my adrenal glands themselves. In other words, he is seeing if my adrenal glands DO work in response to ACTH.

    In my case, and it sounds like yours as well, our adrenal glands work in response to the shot. This is why we feel better after the shot. However, our hypothalamus and pituitary are not sending out ACTH like they should. The shot mimics what they should be doing and makes us feel better than our baseline.
     
    TreePerson, L'engle, Sing and 6 others like this.
  16. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,594
    Likes:
    24,745
    USA
    @DanielBR I know flying with to CA with CFS and also the cost are probably prohibitive but wanted to let you know that both times I was at OMI there were patients there from literally all over the world. I met a family from Norway and a woman from Russia. The nurses told me they've had patients from Europe, Australia, and even South Africa so they are well versed in treating international patients. I also had a person PM on PR after I wrote about my appt with Dr. Kaufman who was from another country. I won't identify anything about them to keep it confidential but the person ended up flying to see him and PM'd me a couple days ago that the appt was wondeful and brought them hope for the first time. I guess, just keep it in the back of your mind as an option for the future.

    @jeff_w Thank you for explaining the ACTH test and is this the same as "Cortristym?" I am sure I am spelling that wrong! Dr. K mentioned that as a test that I might do in the future but we held off on it as he didn't feel it was a top priority for me at that time which I agreed with. Once you get the results, do you know what the treatment would be? I already take Florinef and was wondering if it was that or something different?
     
    NK17, DanME and jeff_w like this.
  17. jeff_w

    jeff_w Senior Member

    Messages:
    295
    Likes:
    1,260
    @Gingergrrl Yes, it's the same test. He said he would prescribe something in addition to Florinef if needed based on the blood work results.
     
    NK17 and Gingergrrl like this.
  18. xks201

    xks201 Senior Member

    Messages:
    713
    Likes:
    292
    So all he gave you was florinef and now you are cured ?
     
  19. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,594
    Likes:
    24,745
    USA
    @xks201 Huh? Not sure if this question is for me or @jeff_w but in my case, I was already taking Florinef for a few months prescribed by my cardiologist and it is by no means a "cure!" It can help with low blood volume and autonomic stuff when taken with lots of water and salt, etc. There are many threads about it that you can find in a google site search.
     
    Rebecca2z and Valentijn like this.
  20. jeff_w

    jeff_w Senior Member

    Messages:
    295
    Likes:
    1,260
    @xks201 Not sure if that comment was directed at me. If so, you clearly didn't read my initial post.
     
    Gingergrrl likes this.

See more popular forum discussions.

Share This Page