Looking for smart doc near Sacramento CA anyone know?

Discussion in 'Fibromyalgia Main Forum' started by theatergirl, Jul 7, 2008.

  1. theatergirl

    theatergirl New Member

    Hi all,

    I have been on and off the boards for sometime. You all are very smart with ideas and knowledge about CFIDS.
    I have been through it all for 12 years and still
    have not had the right help. I have Kaiser (bummer) and have been financially strapped as long as I can remember. My good doc retired in 2000 and has been nightmare with Kaiser ever since.

    I have HCMV, EBV all loads, chronic not acute. My CFIDS kicks off up and down all the time but am housebound for 3-4 mo every 6 mo or so. I am looking for a smart doc near Sacramento and have looked at Co-Cure boards etc.

    Nothing has changed in my opinion over these years
    about all the variances and subsets in CFS, because it is a big dump they put us all in, but I am convinced that those that have persistent post viral fatigue, or true ME, that the virus or in reality the fragmented viruses lie in ready to re-emerge with triggers, stress, chemical, or other.

    If there are any docs out there who are looking at this
    subset and looking at reactivation as simply a HERPES outbreak, then it stands to reason that there may be something that could help "nip it in the bud"...as they say, before you lie in bed for months on end.

    Anyone know of someone smart that can be written too?

    Thanks to all for any help,
    Much love in kind...
    Jackie in Sac
  2. Missizzy

    Missizzy New Member

    Jackie--Have you ever touched base with Jam338 about this? I believe she's in the East Bay somewhere but I know she's mentioned both Sacramento docs and the issue of Kaiser. It might be worth your while to put out a message to her. I'm in Ashland, OR (only 300 miles north of you) so if you find anyone wonderful, please let us all know.

    Best of luck,

  3. DesertRain

    DesertRain New Member

    I have high counts of chlamidia pneumoniae (a very common bacterial infection,not STD, for those of us w/ CFS). I have recently spent some time on a great site, cpnhelp.com, to learn more about this nasty infection.

    There, I learned of a prominent CFS/FMS dr. who is in Sacramento. His name is Michael Powell, D.O- rheumatologist. He seems to be highly respected on the cpnhelp website and I am considering seeing him myself (though I am in Orange County).

    Good luck and let me/us know what you think!
  4. pprender

    pprender New Member


    If you type Sacramento in the search by title function,
    you will get quite a bit of information about the local
    doctor situation. Most of it is kind of discouraging.

    The posting by mleeril (search by user) on page 11 of the permanent "post your good doctor" pretty much sums up my
    knowledge as well.

    Very few Sacramento Doctors 06/15/08 10:39 PM

    Almost all the Sacramento doctors should be removed from this list, with the exception of Dr. Michael Powell and Dr. Kwiker. They are both still practicing. The others should be removed including Rhyll, Mulders, Herman, Snook, etc.

    This from the guy who runs the largest local support group.

    I believe that Dr. Rhyll referred some of his remaining
    patients to Dr. Sanchez when he finally quit his practice.
    I know nothing about him.

    I saw Michael Powell as a patient for about six or seven months in 2005, about six months into my own CFIDS experience. At that time he was a true believer in the
    Chlamydia pneumoniae/combined antibiotic protocol cure for
    CFIDS (and some other diseases as well, if memory serves.)

    A lot of people swear they have been made significantly better by this, but all I got was a lot sicker. A lot.

    Antibiotics can only cure what the stomach can endure.

    My understanding is that he has since given up this approach for something involving Vitamin D and infrared
    saunas. I presume he still prescribes a dizzying array
    of herbs and supplements, but again, I have no recent experience with him. He does seem genuinely committed to
    trying to find a cure for his patients.

    I do not see him as trying to enrich himself at the expense of the desperate and the gullible. But given my own adventure,I would urge caution if you decide to treat with him. Enthusiasm is not a substitute for experience, and a lot of what he is doing is experimental in nature.

    But I suppose you could say that about any CFIDS treatment.

    A lot of the local support group people are Kaiser patients. Possibly one or another might give you suggestions in that regard, but my impression is that
    none of them are real happy with their care.

    There a couple of people who have managed to be treated
    locally with antivirals, but they were not Kaiser patients
    and improvement was marginal in those I know of.

    Enough frolic and merriment. You are not alone in this very hot and smokey region between a rock and a hard place.
    Just feels that way much of the time.


  5. theatergirl

    theatergirl New Member

    Thank you Michael...I already kinda knew the answer, but I keep hoping that someone will appear for us. I get so frustrated with this DD. So many times I think I have
    the answers, but cannot find anyone to really listen and "get it." I have done so much research over the last 12 years and have forgotten most of what I found out, given up, refreshed myself again and again.

    I fought the good fight for a long time...determined not to let this run my life...but it is running my life and as I keep getting older and more debilitaed by this, I am discouraged. I still cannot seem to figure my way out of it.

    I am encouraged about the Whittemore Clinic, but that opening it still so far away. I have never had too much interest in the support group, but feel so alone with all this. My case seems to be so different then most, and since I have well periods I don't stick with the sick thing and all the limitations, and try to pretend I am ok as long as I can.

    Does the support group do email?

    Thanks for your help, I plan to hang out around the messageboard more often.

  6. pprender

    pprender New Member

    There are two, confusingly enough.


    is an old (2004) link, but the contact information
    is still valid. The Sacvalley group is the larger of
    the two and has an invitation only yahoo group for
    e-mail exchanges. The actual meetings vary so don't
    trust the info on that.

    I haven't been to any meetings in over a year, but my
    wife drops in sometimes just to share information.
    Sitting through the meetings is somewhat difficult for
    me and I don't have a whole lot of support to offer.
    It does provide a way to share something about what's
    available locally in medical resources.

    If you're discouraged, I'm probably not the guy to talk
    to. If you weren't so damn sick the situation would be laughable. Research money and meaningful science devoted
    to CFIDS type illnesses is almost nonexistent.

    Our national organization runs a campaign to raise
    awareness telling people to "get diagnosed, get treated",
    when anyone who has been diagnosed, however haphazardly,
    knows that the next thing you hear is medspeak for
    "don't let the door hit you in the ass on your way out."

    I digress. Contact M Riley if you want to try the yahoo
    group. He's more upbeat than me most of the time.

  7. theatergirl

    theatergirl New Member

    This all seems so criminal. Here we are, amazing people who live these half lives and hardly anyone gets it. My doc at Kaiser is nice enough, but he does absolutely nothing at all for me. I am sure, doesn't even read any of the information I have given him in the past.

    I have begin the hunt for answers again. I always come back to the same place...the majority of us have, basically, a really bad case of herpes. There is a genetic component and there are a varitey of triggers, but, it is still herpes.

    I have this dream that someday we can take some medicine when we feel an episode coming on, much like a bacterial problem.

    It's just the endlessness of it all...

    I pray the research is getting somewhere...I really do.
    Jam338...if I had any money, it is unfortunately gone now.
    I cannot hold a job, I was independent for so long, running my own show, that disability isn't even worth applying for.
    I have seem so manyy docs in the past that I just keep giving up on them. The answer I get is..."try to limit your stress", like I can control all this if I would just try harder.

    Hey Michael...don't worry about being down, I get it and can totally understand...I'm there with ya. Thanks for the info and thanks for writing.

    My best to you...