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!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Has Anyone Seen Dr. Kogelnik?

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

  1. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,451
    Likes:
    1,777
    Midwest, USA
    I do not have palpitations or fluttering. I was thinking of the people who use a heart monitor to control their pacing and stay below their anabolic threshold.
  2. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    447
    Likes:
    228
    West Coast USA
    This thread has wandered a bit from the original topic. WOuld love to hear updates from any one being treated by Dr. Kogelnik -- thanks.

    I had a few visits with him, and found him to be the most clear I had at that point ever heard regarding the causes and underlying pathology -- at least to his mind -- for CFIDS. He explained very thoroughly all the drugs available, what the risks are, and determined with me that I'm not sick enough at least for now to try the heavy duty ones, and I'm well enough (or was then, anyway, this was a few months ago) that I wouldn't see any appreciable "bump" from the lighter-weight ones. We were to check in again in six months. When I subsequently saw Montoya, he basically concurred with Kogelnik. Perhpas that's not surprising given they both come out of the same approach at Stanford. Montoya did say they were going to release some results from their trials soon -- don't know when apologies.

    I'm still thinking I want to try some herbal antiviral approaches first before trying out the big kahunas.

    He did say that the folks he has seen really bounce completely back were all within the first year or so of falling ill.
    merylg likes this.
  3. RUkiddingME

    RUkiddingME Senior Member

    Messages:
    138
    Likes:
    159
    Canada
    Hi there, I'm a patient of his and like him very much! Here is my blog on Valcyte if ou are interested. http://forums.phoenixrising.me/index.php?entries/valcyte-2013-week-21.1410/. I have not posted an update for a while Since I have been busy finally having some quality of life after being housebound for three years and mostly bedridden for two and needing a wheelchair. I have improved more since the last update and actually enjoyed a two week vacation but am now in a relapse hopefully short lived from doing too much on vacation. I will update my blog as soon as I bounce back. Good luck!:)
  4. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    447
    Likes:
    228
    West Coast USA
    Hey that's funny, I had actually been reading your blog yesterday. Glad to hear you're generally up, and hope the relapse is indeed brief! Thanks for responding.
    RUkiddingME likes this.
  5. Pam123

    Pam123

    Messages:
    22
    Likes:
    9
    GREAT DOCTOR!!! Although my daughter has not improved yet, he is the only doctor (out of approx. 40 doctors that she has seen) that had any clue what was wrong. He is working hard to figure out what treatment is going to help her. He explains everything thoroughly and explains all the risks of each treatment.
  6. SanDiego#1

    SanDiego#1 SanDiego#1

    Messages:
    278
    Likes:
    83
    SouthEast USA
    ISSA- Of course most CFIDS Dr. want to see patients during the first year. Easier to treat and less fallout. Also the younger the better. I have found since I am older-and have had CFIDS longer. Fewer CFID Dr. want to see me.
    Almost like it is too late?? Very discouraging. I am getting better despite them.I would think it would be just the opposite as they would learn more from the older patients.

    Best to you-

    San Diego #1

    San Diego #!
  7. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    447
    Likes:
    228
    West Coast USA
    Thanks, San Diego. Yes, understood and agreed that older and more advanced cases might provide much clearer insight into the various issues. Patterns of sypmtoms might be more pronounced, "seasons" of the disease might be better identified when there are decades to consider.

    One recovery story of someone of advanced age is the PhD psychologist from Stanford who created the online course I just completed about pacing. He was around retirment age when it hit him. The advantage there was he was able to afford to just focus on healing. It still took him 7 years and he's in 95% remission, by his own description.

    I'm constanly running up against the stress of being a provider and needing to work as long as I am able, not to mention that I'll lose insurance if I don't. So timing regarding a number of factors like work/life balance stress, etc., whether young or old, may be an important factor for recovery.

    It is almost becoming a mantra for me and I need to break out of it but this week it keeps circling in my mind "so many variables, so many variables..." May we each find the path to our own true healing.
  8. SanDiego#1

    SanDiego#1 SanDiego#1

    Messages:
    278
    Likes:
    83
    SouthEast USA

    Sparrow- The interesting thing is-I had probably 15 years of almost complete remission. I didn't need to see CFID Dr. My Gyn gave me my Immune Globulin shots and B-12. Then had much stress in a 2-3 year period. Husband had accident and many surgeries , etc, etc. Anyway When I did crash I really didn't even know I was crashing.
    I actually found fewer Dr. (CFIDS) in South than before. They were having none of it. Not even to listen.
    Getting better all the time now and am on new sleep Apnea machine which has helped tremendously.
    I don't get it with the age-as we have good insurance and can pay.Some of the younger Dr. I particularly find more insulting. Anyway- my point was , I would think Dr. would want to know why and how I got better or worse.
    I know one thing. I am a lot smarter than I was 30 years ago.Did the Dr. at Stanford write anything about his experience?
    Thanks for your post. Went to school in California and love it out there..
    You have the best Dr. and more to choose from.

    Be Brave, If we can't be brave,
    Pretend to be,
    No one will know the difference!!!

    San Diego #1

    San Diego#1
    maryb and Sparrowhawk like this.
  9. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    447
    Likes:
    228
    West Coast USA
    Great motto, I like it.

    You're the second person I've heard from who did better on gamma globulin, I need to learn more about that.
    Excellent to hear you are improving again!
  10. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    447
    Likes:
    228
    West Coast USA
    SanDiego#1 likes this.
  11. SanDiego#1

    SanDiego#1 SanDiego#1

    Messages:
    278
    Likes:
    83
    SouthEast USA
    Sparrow- I printed off all material from Bruce Campbell- Thank you . It is short -to the point and
    wonderful, practical advice. Also going to see what courses he offers.

    Thank you so much.

    Also have to tell this funny CFS story as all of us have Neuro problems off and on. I could not find my Potassium supplement yesterday and had looked all morning. My husband ask me SARCASTIC-- if I had put it in the freezer-
    I told hm "NO THAT IS WHERE I KEEP MY CELL PHONE". We laughed all afternoon about it.
    Still haven't found my Potassium.!!!!!!

    Thanks for the info on Bruce Campbell. Great.

    San Diego #1
  12. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    447
    Likes:
    228
    West Coast USA
    Glad you found the link and his story helpful. That anecdote is priceless, I will definitely share that one with my wife and kids when she gets home. I have a feeling it will resonate!
  13. maryb

    maryb iherb code TAK122

    Messages:
    2,758
    Likes:
    1,785
    UK
    Anyone any updates on treatments?
  14. Pam123

    Pam123

    Messages:
    22
    Likes:
    9
    The anti-virals had not decreased any of my daughter's symptoms so we decided to have her checked for Lyme again (she had been tested twice before, both results were negative). This time we took her to a different lab that is supposed to specialize in Lyme. This time she came back positive.

    So now she has started antibiotics and we are hoping to see improvement with the next few months.
    Valentijn likes this.
  15. maryb

    maryb iherb code TAK122

    Messages:
    2,758
    Likes:
    1,785
    UK
    @Pam123
    thanks for the update, sorry to hear the a/virals didn't improve any of your daughter's symptoms - did Dr K suggest another Lyme test?
  16. Pam123

    Pam123

    Messages:
    22
    Likes:
    9
    maryb:

    Dr. K didn't suggest the third Lyme test. We were just desperate to find an answer. I know there is a lot of controversy over Lyme and specific labs but we figured at least it was a clue. We are encouraged because her symptoms are flaring so much with each dose - the drug is fighting something!!!
    maryb, Roy S and Sushi like this.
  17. maryb

    maryb iherb code TAK122

    Messages:
    2,758
    Likes:
    1,785
    UK
    @Pam123
    good luck with the a/biotics hope so much they help.
    MeSci likes this.
  18. vli

    vli

    Messages:
    1,741
    Likes:
    1,806
    CA
    it seems to me that a lot of us have both lyme and viral probs and the lyme takes near forever to shake off. i myself find that i also have the dilemma of whether to go after the viral problems or bacterial problems first.
  19. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    447
    Likes:
    228
    West Coast USA
    Do you mind telling us which lab helped you get the positive results? I've tested several times but only the Kaiser blood test, not iGenix or whatever specialized tests that are available. Thanks.
    maryb and vli like this.
  20. Pam123

    Pam123

    Messages:
    22
    Likes:
    9
    The positive Lyme result came from Igenex lab in Palo Alto, California.

See more popular forum discussions.

Share This Page