NO ONE IN CALIFORNIA GETS CFS??

Discussion in 'Fibromyalgia Main Forum' started by terrilynnb, Mar 7, 2007.

  1. terrilynnb

    terrilynnb New Member

    Ok, maybe I will get someone to answer this one! Either no one in Central California gets CFS, no one on this board lives in Central Cal or there are no good CFS docs here, because I have asked a few times if anyone around here has a good doc for CFS and no one answers other than someone told me to look at the good doc list which is very outdated. I called the only central coast MD on the list and the number is disconnected. PLEASE, PLEASE, if you live anywhere near Santa Barbara, Monterrey, Fresno, Bakersfield, San Luis Obispo, etc, please let me know if you have found a doc who is familiar with CFS and knows of the Cheney and Montoya or others studies. The only docs I have met here all still believe CFS is not a real illness and tell me to exercise or try other antidepressants. They don't listen when I tell them that I was an avid runner when I got sick and exercise makes me worse. Does anyone know of any good doc on the west coast-I will even go to palm Springs, Las Vegas or Phoenix or somewhere if I have to to find someone who is familiar with these studies. Please??
  2. LaQuiet

    LaQuiet New Member

    I could help, but I live in the sticks of Southern California and I'm having a hard time finding a decent doc out here...
  3. Lichu3

    Lichu3 New Member

    I think there are a couple of us in the Bay area. My primary and infectious disease doctors don't specialize in CFS, don't know all the types of test I need, but at least have never questioned that I had a physical illness. However, both of them are not taking new patients - I was able to get into their practices because they were friends of friends.

    If you are willing to go to Las Vegas, you could consider going to the Incline Village area to see Dr. Peterson (I think he's still there, anyone?).
  4. terrilynnb

    terrilynnb New Member

    Thank you guys so much for responding to this-I sure appreciate the feedback.
    I am so sorry for you guys who also do not have good doctors in your area.
    I had typed this long response and lsot it-it just disappeared-
    Lichu, Is Dr Petersen sitll in Incline Village? Doesn't Rich Carson live in Santa Barbara?
    Spacee, where in Fla are you? I'm orig. from Jax and was jsut back in ST Aug last week. Stay away fron the Mayo-I went when I first go sick and they just kept finding parts to remove-3 sorgeries which had nothing to do with releiving CFS symptoms-they didn't know anything about CFS.
    STURG 1,
    do you live in AG? I am in Cambria. I have heard of Doctor Forseman-all good things, but did not know that he was knowledgeable in CFS research. My experience with naturopahtsin the past has been that they put me on immune STIMULATORS but that seems to make me worse-I do not ever get colds but actaully seem to have an over-active immune system as I think a lot of us do. Did you ever discuss either Nexavir or Valtrex with him? Does he seem to be reading the research on CFS? I have not yet found a doc on the central coast who has the time or interest to read anything about CFS so if he is up on that, it is great.
    ARe you doing Yoga on your own at home or do you go to a class? Thanks, so much for the info. terri
  5. grace54

    grace54 New Member

    FFC Affiliates
    Los Angeles
    Holtorf Medical Group
    23456 Hawthorne Blvd. Suite 160
    Torrance, CA 90505
    Phone: 310-375-2705
    Fax: 310-375-2701


    Also FFc's in Vegas and Utah
    [This Message was Edited on 03/08/2007]
  6. swedeboy

    swedeboy Member

    Yes Dr. Peterson is still practicing in Incline Village, Sierra Internal Medicine, 865 Tahoe BLVD. suite 306, Incline Village, NV 89451, 775-832-0989. You can call his office and he'll have a packet sent out to you. He has a six month to one year wait list and he's way cheaper than Cheney.

    Also if you're willing to go to Las Vegas then there is the FFC out there, www.fibroandfatigue dot com. You only have to go to one office visit with them and then the rest are phone consultations, I think. Why they don't have one in California is beyond me.

    Yes, I think Rich Carson is in Santa Barbara, at Least that's where Pro Health is. Contact the Santa Barbara support group and ask for a Doctor referral. Support group lists are found at several places, such as cfids.org

    I would Contact the Support Group Leaders in the area's you mentioned and ask them for Doctor referrals.

    You can also print out info on Dr. Montoya and then tell your Primary Care Physician that you want to get into his study and that you need blood work first. You can also have his office fax what blood work needs to be done to your Primary Doctor or to you.

    Call Dr. Montoya's office and Speak with Delores his assistant and tell her you need her to fax specifically what lab work needs to be done inorder to get an appointment as a CFS patient. 650-725-8439

    (Get the blood work from a focus lab, then see if you're positive for HHV-6 and EBV, and if you have relatively high IgG antibodies then make an appointment with Montoya.)

    Or write down each test needed, then print out stuff about Dr. Montoya's studies, past and present, and take that info to every doctor until one says that they'll sign the lab requisition form for you. Once you get the lab results then have your Doctor call Montoya's office for a referral and then fax the results and then you can call and make an appointment.

    Sounds like a lot of work, but once you get the ball rolling it will workout, I was so anxious and doubtful that something was going to go wrong and I would not get to see Montoya, but I slowly but steadly persevered. Baby steps get us to the same place as big steps.

    Where on the Central Coast are you? Are you nestled high up in Big Sur's Ventana wilderness or something. Your frustrations do not go unnoticed, I can definetly relate.

    Montoya is the only so-called CFS expert in this globally renowned technology capital of the world know as"Silicon Valley." and Montoya only treats with AV's, so is he really a CFS specialist?

    I mean if you don't respond to his AV's then where do you go? I'm in the highest income per capita county in the state, in the 7th largest economy in the world, in the 10th largest city in the country (San Jose and then San Francisco), in the most technologically advanced region (Silicon Valley), and still Montoya is the only Doctor who only partly specializes in CFS.

    CFS Doctors definetly do not seek us out. Instead they are often in obscure areas such as Incline Village. Why do they not flock to where the technology and money are and then spread out from there.


    Anyways, I hope you find a compassionate doctor who is passionate about finding effective treatments for you.


    Peace and Smiles, Swedeboy


    [This Message was Edited on 03/08/2007]
  7. swedeboy

    swedeboy Member

    http://www.scmedicalcenter.com/HealthConditions.aspx
  8. terrilynnb

    terrilynnb New Member

    Thanks for all the info, swedeboy. I am in Cambria, the next town just on the south end of BIg Sur-and actually, Big Sur is my favorite place in the entire world. I can only drive through there now-not hike, but I am glad that atleast I can drive and I know someday I will hike in BIg Sur again, and you will too!
    I did get all the info on the tests from Montoya's office and once I have the HHV-6 done, I will try to get someone to give me a referral. My chiro is the only one who would even order the tests because all the doctors have the same old answer to the EBV thing-that high titers only mean past exposure and that most of us adults been exposed so they say 90% of those over 18 have high EBV titers and that it doesn't mean anything. I don't buy it and obviosly neither does Montoya. Anyway, my chiro agreed to order the tests, but the Quest lab here said that Focus didn't do the HHV-6, so I have to go have a redraw and send the blood again. I hope when it comes back I can get someone to give me a referral to Montoya, and I guess I am banking on the titers being high. As you have found, if they aren't I may just have my hopes up for nothing.
    I actually called Petersen's office in Incline in 92 and at the time, he ahd an 18 month wait for an appt. I thought at the time-I would surely not be ill for 18 months, but here I am 15 years later still relapsing everytime I take a walk. so, hopefully, there is some doc around who will atleast give a referral even if they don't think there is such a thing as re-activated HHV_6 and EBV.
    I sure hope you get some answers from Montoya and some relief. Thanks for the info. terri
  9. swedeboy

    swedeboy Member

    I love Big Sur. One of my favorite places is Lime Kiln state park. I love to hike up to the waterfall, hope to do it some day again. It's so magical there. I sure hope that you find a good doctor. [This Message was Edited on 03/08/2007]
  10. terrilynnb

    terrilynnb New Member

    Thank you so much for the info. I am going to make an appt with Dr. Foresman. I go to a cardiologist in SLO and an endocrinologist in Santa Maria but neither of them have time to read up on CFS and while they can treat the heart and endo issues that they understand, they really don't know the first thing about CFS so it would be great to have a primary care who does.
    We are so fortunate to live in such a beautiful area-if you have to be sick, atleast we have good weather and wonderful places to walk. I never could enjoy it while I was working because I basically was only able to work and then go home to bed, but now that I am taking some time off, I am going over to the beach and walking on the boardwalk-just short, slow walks, but it feels so good to be doing it.
    Are yo a breast cancer survivor? That was my major fund raiser when I had my shop for 7 years. I always sponsored women to do the 3-day. I hope to some day be able to do it also, but right now, the 1-mile boardwalk on Moonstone Beach is my big challenge. My mom, nieces and sister and many friends have delat with BC so it is where my fundraising efforts always went. I also participated in the Wine and Style Event at the Madonna Inn to raise funds for local BC realted charities. I wish that I could concentrate my efforts on raisng funds to go to CFS research also, but the general public really diesn't get it and won't give money to research a disease that they think is "fatigue" But that is another issue. Anyway-thanks so much for the info. Keep up the baby steps. terri
  11. lisagra

    lisagra New Member


    Cindy Quattro is a Physician's Assistant and Licensed Acupuncturist who
    is very knowledgeable about Orthomolecular Health Medicine who works
    with Dr. Randy Baker at the Pacific Center for Integral Health in
    Soquel


    The Los Altos doctor is Deborah Metzger, (650) 229-1010, who is also a gynecologist and reproductive endocrinologist. She might also be holistic minded, although I'm not completely sure.

    Janine Talty in Watsonville, who is an Osteopath, and has trained under Dr. Stricker in San Francisco. She readily admits to being a newcomer to treating Lyme and not knowing everything (who does, about this disease?), but I have been reservedly happy with her so far. Her communication is excellent and she is willing to do research where her knowledge is limited. She is still taking new patients. She is also open to alternative forms of treatment.



    I forgot about Ginger Savely, a family nurse practioner in S.F. To contact her, you have to email her at lymesf@....

  12. ladude

    ladude New Member

    check life extension foundation's site
    do search for doctors and you will find plenty

    it works best if we are our own doctor and not rely on anyone 100% unless, maybe, perhaps its one of the top guys like cheney and even then NO one escapes... questions!

    hope this helps
    LAdude
  13. angelkisses6

    angelkisses6 New Member

    Hi,Iam in long beach california,but cant find a good Dr at all.I sure hope i can soon i am such a mess!!!!!!!!!!!