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Has Anyone Seen Dr. Kogelnik?

Discussion in 'ME/CFS Doctors' started by InvertedTree, Sep 2, 2010.

  1. InvertedTree

    InvertedTree Senior Member

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    I'm wondering what your experiences are and/or any contact information for him.

    He used to work with Dr. Montoya at Stanford.

    Thanks for any info!
  2. Daffodil

    Daffodil Senior Member

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    dr. andreas kogelnik
    infectious disease specialist
    Mountain View, CA
    650.962.4530
  3. illsince1977

    illsince1977 A shadow of my former self

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    I am interested in your experiences if you have seen him, as well.
  4. Daffodil

    Daffodil Senior Member

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    i think there are a couple of people on prohealth.com who see him...you can ask on the message boards.

    good luck
  5. JulieR

    JulieR

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    Kogelnik

    This may be a bit late to be helpful, but I just went to see him this afternoon, and I was very impressed. He sounds to me like he's really leading the charge with a lot of research, he's got a coherent theory of what's going on, and he's got a bunch of promising studies in the pipeline. He also comes across as a genuinely warm person. I'm pretty thrilled.
    aimossy and Marianarchy like this.
  6. jewel

    jewel Senior Member

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    Hi Julie-- Thanks for posting. Noticing that that was post #1, welcome. I was wondering if you could elaborate a little about what his coherent theory is and approach. I would love to find someone whom I could get in to see without traveling across the country (or state). Take care, J.
  7. JulieR

    JulieR

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    More than a month late in seeing your response -- sorry. He's focused on coinfections. He was the lead author of the study on Valcyte, in which 30% of his patients got better *and stayed better* even off the antiviral, and another 30% or so got better but only stayed better if they kept taking the drug. He's about to start a new trial, he says, of another antiviral. His idea is that something causes the immune system to go out of whack, and then coinfections take hold and keep the immune system overtaxed. If you can knock down the coinfections, sometimes the immune system kicks back in.

    He also is planning a trail of rituximab, combined with an antiviral. His idea there is that the white blood cells end up being a reservoir for viruses, and that the reason rituximab works is that it kills off the white blood cells where the virus is hanging out. When the bone marrow regenerates the white blood cells, they're uninfected -- initially. But then, over a couple of weeks, they get reinfected. His thought is that if you take an antiviral at the same time, it might be able to knock the infections out entirely.

    That's the kind of thing he's researching, but he also looks at the situation more broadly, dealing with the more mundane things like sleep, etc.
    SanDiego#1 likes this.
  8. jewel

    jewel Senior Member

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    Thanks so much!!
  9. JulieR

    JulieR

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    update

    I spoke with Kogelnik yesterday, and he said the trial of the antiviral is now likely to begin in March or April. He's gotten the drug company on board, and now he's going through the process at the NIH. My sense is that one shouldn't count on that particular timeline, though.

    He also said he's got a lot of other clinical trials in the pipeline, including one for some immune booster.

    Unfortunately, I don't know the names of either of these drugs, though.
  10. JulieR

    JulieR

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    Here's the latest info from Kogelnik: The trial he's been trying to get started is for valomaciclovir. He hopes it will be as effective as Valcyte with fewer side effects. The trial has gotten delayed, though, and he now doesn't now when it will happen.

    What's likely to happen first is a trial of rituxan in combination with valcyte. But it's going to be a self-pay trial, and the rituxan alone will cost between ten and twenty thousand dollars, plus the cost of administering it, plus the valcyte.
  11. SirArthur

    SirArthur

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    I'm a patient of Dr. Kogelnik's. Julie did an excellent write up describing him & his co-infection theory. I wish had brought my recorder along with me as he covers alot during your hour consultation. On my first visit he wrote up lots of lab work focusing on EBV/HHV viruses, and many bacterial ones.
    He also told me the trial for the new Anti Viral he is so optimistic about has been delayed. If I remember right, one of the snags is that the FDA (or drug company) will only allow for 30 days of treatment and it needs to be much longer than that.
    I'm very impressed with him, and I would certainly not hesitate to recommend him. He isn't cheap, but he did mention that they have a goal of being a free clinic in the future.
    And he is also good at answering questions via email.
    SanDiego#1 likes this.
  12. Hope123

    Hope123 Senior Member

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    Thanks for the info.

    The company I think that is invovled with this is Epiphany Biosciences. IIRC, They had done some trials with valomaciclovir in ACUTE EBV infectious mononucleosis that showed it might shorten the length of sickness from that illness. One of their execs? major shareholder? Michael something-or-another was on the HHV-6 Foundation Board and testified during at least one CFSAC meeting.
  13. SirArthur

    SirArthur

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    Thanks for the name of the company, I didn't know the name or the connection with the HHV-6 Foundation.
    I was just looking at their website to find out more about valomaciclovir. Dr. Kogelnik said it would likely be a shorter course with fewer side effects than Valcyte. For myself, he suggested I wait for this new AV rather than start Valcyte, but this was before it was delayed.
    Now I'm kind of in limbo as far as my own treatment goes.
    But for those who can't find a Doc. to prescribe AV's, I think Dr. K would be a good guy to go see.
  14. JulieR

    JulieR

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    He recommended that I take Valcyte. He's a bit of a one-trick pony, exclusively focused on antivirals. Well, that's not quite true -- he's also interested in Rituximab, but he's certainly not going to look at your sleep or treat your OI or anything along those lines. He's good about responding to emails, and I'm really glad he's in the field, but there's not much point in going to see him unless you're interested in an antivirals or one of his upcoming clinical trials.
  15. WillowJ

    WillowJ Senior Member

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    does he also do testing with NK cells, IL's, and such?
  16. paddygirl

    paddygirl Senior Member

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    Invest in ME

    There is a Dr Kogelnik on the poster for the London Invest in ME conference in May. I assume it's the same one.
  17. JulieR

    JulieR

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    I guess I misrepresented him a bit. He tests for viruses, immune function, and some hormones. Here's exactly what he tested me for:

    Coinfections:
    Coxsackie A2, A4, A7, A9, A10, and A16 (all AB).
    Coxsackie B1-B6 AB.
    Chlamydia Pneumoniae IgG, IgA and IgM.
    Mycoplasma pneumoniae AB IgG
    Mycoplasma pneumoniae AB IgM
    Cytomegalovirus IgG
    HSV 1/2 IgG
    HHV6 IgM
    HHV6 IgG
    HHV6 DNA
    Varicella IgM
    Varicella IgG
    EBV nuclear AG (EBNA) AB (IgG)
    EBV Early antigen D AB (IgG)
    EBV VCA antibody (IgM)
    Cytomegalovirus IgM
    Parvovirus AB B19 IGM and IGG.


    Immune function:
    IgG 1-4 and IgG serum
    Natural killer cell functional assay

    Hormones:
    Estrogen
    Vitamin D
    TSH
    Thyroxine
    Progesterone

    I don't know what he does with the hormone info. Mine were all normal. The only thing he had to offer me was Valcyte. He didn't do anything with OI, nothing with sleep, nothing with adrenal function, nothing with inflammation. He's an infectious disease doc, so that's his focus.
    Fred1234567 likes this.
  18. WillowJ

    WillowJ Senior Member

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    but you can get sleep and pain treatments from any decent (decency is considered to be inclusive of being non-prejudiced) GP or rheumatologist, and OI treatments from an especially good GP, rheum, or cardio, even if they know nothing of ME/CFS or conflate CFS with fibromyalgia. If you have standard inflammatory markers (positive ANA, for instance), you can get inflammation treatments from a decent rheum.

    No (or few) non-ME/CFS docs will do anything for infections, absent overwhelming signs of current infection (which few of us have, even though we all/most all have 2 or multiple infections).

    Other than an ND or integrative med MD, you might have to see an ME/CFS doc for adrenal support, too.

    So it depends what sort of care you're getting elsewhere, and other specifics to your own situation, whether an infectous disesase specialist is going to be an added help, or whether you need someone with a more comprehensive style.
  19. WillowJ

    WillowJ Senior Member

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    so no IL's but definitely NK cell panel (I wonder which all makers?). Good to know... thanks. :)

    but no enterovirus? I guess I should email and ask him about that; possibly the specifics of which infections tested depend on the particular case...
  20. silicon

    silicon Senior Member

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    Dr. Kogelnik Talk Tuesday 4/19 12:30-1:30pm, Mountain View, CA

    Dr. Kogelnik, the Infectious Disease doctor who did the groundbreaking work with Dr. Jose Montoya on anti-virals and Chronic Fatigue Syndrome at Stanford, will be giving a free talk on CFS.

    For those of you who are local and interested... Dr. Kogelnik will be giving a 30 minute talk on CFS with Q and A by the Women's Hospital at El Camino Hospital's Mountain View campus. For most patients who've seen him in the clinic - a lot of this will be review. All are welcome. It would be great to show the hospital that there is a strong community interest for this topic.

    El Camino Women's Hospital - Lunch N Learn: "Re-evaluating Chronic Fatigue Syndrome and Immunology"
    Tuesday, April 19
    12:30 1:30pm
    El Camino Main Hospital, conference room G

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