California Doctors?

Discussion in 'Fibromyalgia Main Forum' started by LW, Apr 16, 2003.

  1. LW

    LW Member

    Hi Guys,

    Still looking for names of good CFS/FM doctors in California. If any of you have personal experience with any, please let me know. I'm also interested in knowing their specialty and general treatment protocols. Guess, too, I need to know something about cost...I'm assuming all these guys are expensive...Anyway, any information you can pass on to me will be much appreciated.

    My own GP, by the way, finally admitted she is out of her depth when it comes to treating CFS effectively, which she now acknowledges is a real disorder. Encouraged me to find a specialist. (Guess we educate these GPs one doctor at a time...)
  2. gcalex

    gcalex New Member

    I don't know him personally but he certainly has written extensively on the subject of CFIDS and has a very definite protocol and firm views on cause. He has a website which I am sure you can find on a search engine, I probably am not supposed to post it here.
  3. scubadiver

    scubadiver New Member

    Goldstein has just retired.
  4. jstbrznby

    jstbrznby New Member

    Dr. Silverman from Cedar Saniai he comes recommended from the lists of Dr.s registered with These syndromes we all have. And, his office was so nice to get me in, they send you a packet of paperwork and tell you not to eat or drink before the appt as he runs lab work on his patients. Sounded like a goo thing to me, at least he doesn't waste time. He is here on our page, check it out. Hope this helps....HUGS...Pam2
  5. LW

    LW Member

    Thank you all for taking the time to reply. I know there are a number of doctors on the doctor list, but some of them are self-referred and don't have a lot of patient feedback. So I'm glad to get any responses from patients out there. I will read all of your responses and take your advice to heart. Thanks again.


  6. sanlee

    sanlee New Member

    I'm also not sure where to turn. I'm in Central CA and there are no Rheumatologists in my health directory who treat or see our cases. Guess the best guess it to talk to you family practitioner and ask. If you find out anything, please keep me posted.
  7. LW

    LW Member

    LW here,

    Forget asking your GP anything. They know little or nothing about CFS or FM. I am currently having some tests done by CFS/FM specialist Dr. Michael Rosenbaum in Corte Madera. He is acknowledged in the book "From Fatigued to Fantastic" (so is Goldstein and a few other familiar names) by Jacob Teitelbaum, one of the nation's CFS/FM gurus. (I'm told that Teitelbaum charges $5,000 just to walk in the door, which puts him on my untouchable list; don't know about you.) Rosenbaum, like all of these guys charges big bucks ($350/hr.), but I'm at the point where I really need to see an expert in this field (that is someone who actually knows more about the disease than I do). I have only met with Rosenbaum once. I meet with him again next week to get the results of my lab tests, and then we'll see where we go from there. So far all I can tell you is that if you want to see anyone with some expertise in this field, save your money up because it's gonna cost you. Hopefully, it will pay off in the long run. I'm gambling on it, anyway.
  8. cristine04

    cristine04 New Member

    Yes please tell us how it goes! I am from California and find myself in a similar desperation!! If all goes well with you and that Doctor in Corte Madera I'm going to give it a whirl myself. Please keep us posted, I've dropped so much money on stuff in the last 10 months and I can't do it anymore--I Know so many on this board feel the same.

  9. LW

    LW Member

    In response to the last two messages on this board, I am in Central California. Doctor Rosenbaum is in Corte Madera which is in Marin County next to San Rafael. I don't recall whether he is on the Good Doctor List at all. My feeling about that list is that it's least one doctor I know of who is listed has retired, another moved to a different location. Others I'm sure have not bothered to list their names because business is so good. In any case, I think it pays to check these guys out & get referrals. I know this message board has some rules about endorsements and I don't know to what extent an opinion for or against a doctor breaks those rules, if at all. But I do think this is important information which we should be able to share because there are many doctors out there charging big bucks. And some are good ones, and some are not. If you look at some of the replies to my previous request for referrals, you can see a few other doctors were recommended to me. I choose to go with Rosenbaum primarily because I liked an interview he did with and because I saw his name listed in various other literature. But the jury is still out on
    whether he is going to be able to help me or not.
  10. kjan9

    kjan9 New Member

    HI, I live in Southern California. When I started going in with all of my misterious pain and worrisome complaints I had Kaiser insurance. Luckily at that time 1996-1999 a lot of others at Kaiser Fontana had also been put through the mill of ruling out all else "serious" and refered to Dr. Floyd Anderson (well known there). He attended conference with Dr. Jay Goldstein and ended up with so many of us that held a full room "Support Group" and eventually put me and others off to a reg m.d. that was no help. I got frustrated with no help after that , then I won my ssd case (anderson helps well with that) I had Medi-care and chose someone closer to home almost wrote closer to hope!! More truthful comment! Ha. Anyway here I am again looking to find an uptodate doc that will work with my Medi-Cal/Medi-Care that I chose in May. Trying to save $ now that I have divorced the "breadwinner" I'm on a fixed income. cfids was part of the marrage prob. sounds so familiar with most I've noticed.

    I hope this helps, since I don't know where in this big state you live!

    Good Luck and let me know!
    Karen (kjan9)
  11. pearls

    pearls New Member

    If you need a chiropractor, go to Dr. Richard S. Garabedian in Selma. He's unbelieveable! I always am able to get right in to see him at the time we agreed on. He actually told me that because I study so much about fibromyalgia and myofascial pain, I probably know more about it than he does! Amazing! [Note: I need to add this comment since my last amendment: This is in no way to indicate that Dr. Garabedian doesn't know about what ails us. I have only repeated what he said to indicate the respect he shows to a well-read patient. He is very knowleageable and is willing and anxious to learn everything he can about our problems.]

    However - this is best of all - - he gets results!

    He would probably send you to Dr. Michael P. Azevedo in Fresno to treat your pain. He's a physiatrist (pronounced fis-ee-a-trist, a physical rehabilitation doctor). However, Dr. Azevedo has far more patients than his practice will hold. He's a fine doctor. If you want to work with a protocol that includes herbs, however, Dr. Azevedo is not the doctor you want to see. He only wishes to prescribe medications that have been through the Food and Drug testing process and have a proven track record after that. This is the doctor who recommended Dr. Garabedian to me.

    I have a new internist in Hanford, Dr. Wick. Well, that's what everyone calls him. His proper name is Dr. Asela Wickremasinghe. He's with Kings Health in the Kerr building in Hanford. He came well recommended: by my pulmonologist and, separately, by an RN. I understand that he is a really good patient advocate. He is very nice, respectful, knows about fibromyalgia, and even knew - get this - that fibromyalgia patients sometimes suffer with thick phleghm. Amazing! When I was diagnosed with pneumonia, I noticed that he was very thorough and insisted on getting reliable test results. However, I have only had a few visits with him. The office, though, might be a problem for you. I have had a doctor in this practice before, and I quit because I couldn't get the personal and quick help from the office staff I was used to getting with other doctors. Right now, though, I want a good internist and I want him to be not too far away. It looks like Dr. Wick is the man for the job. I'll have to go to the trouble to get my refills called in early.

    Maybe this will help some of you,
    [This Message was Edited on 09/02/2003]
    [This Message was Edited on 09/02/2003]
    [This Message was Edited on 09/05/2003]
  12. LW

    LW Member

    I forgot to tell you all that Dr. Rosenbaum does not take insurance of any kind. You can submit bills to your own insurance and hopefully they will reimburse you a bit. I'm currently battling with Blue Cross over Rosenbaum's bill. They told me they would cover 80% of his costs, then told me later that was only 80% of what they considered to be ALLOWABLE charges, which is less than half of what he charges. So I got stuck with a huge bill and I'm arguing with them about it.

    Regarding local doctors, I have an OK GP. She listens and helps with the stuff she knows about and refers me to good people with stuff she doesn't. I also have a pretty good chiropractor. There are no CFS specialists in the Fresno area to my knowledge. There is one person--a pharmacist named Diane Morton(I think) at Dental Medical Pharmacy at the corner of First and Nees--who is the most knowledgeable person I have run across so far in Fresno about CFS/FM/Hormone issues. She also consults with Jacob Tietlebaum from time to time. Any of you who can't afford to spend the big bucks right now to see a CFS specialist outside of this area might consider asking her if you could consult with her. I don't know if she would charge for that. She naturally talks to patients who are there to fill special prescriptions or buy special supplements that are available there. There is also another gal there who seems to know quite a bit as well...don't recall her name. Anyway, if you are desperate, it might be a place to start. There is also a Nurse Practioner up in Coarsegold named Teri Snyder who is a real expert on Candida. Any of you who have this problem (which can result in every symptom under the sun) should definitely give her a call. I'll keep you all posted on my results with Rosenbaum as time goes by.
  13. hollie9

    hollie9 New Member

    I've seen Dr. Erich Ryll for about 8 years, in Carmichael. He is rather unorthodox, perhaps eccentric but he is good. Specializes in CFS/FM and his wife has a particularly bad case of CFS.

    Almost every time I bring in some new article I've read with a new treatment he has already used it and tells you if it did or did not do much. He will let you try it even if he doesn't think it'll work.

    He has written research papers on CFS which he insists on calling Myalgic Encephalitus. He is in the process of publishing some paper now in a medical journal. He knows other publishers you read about like Nancy Klimas and others.

    He usually only works from 7:30 AM to Noon and not on Friday. My Blue Cross insurance pays for his bills. His fees are definitely not exorbitant.

    People come from all over the state and maybe nation to see him in his rather dismal funky office. He's more interested in the disease and research than the bureacrocy and professional demeanor. He often answers the phone himself, only has one helper.

    He always tells you at least one long joke, he says they stick to him like glue.

  14. Adl123

    Adl123 New Member

    When I lived in San Jose I went to a great doctor who was in Los Gatos. His name is R.O.Waiton,M.D. and he is on the doctor referral list. He is a nobel lauriate and integrates herbs and other supplements with regular medicine. He has multiple specialties and his office is friendly and welcoming. He is worth trying if you are able to get to him. Good luck, Terry
  15. LW

    LW Member

    Thank you Holly for the great lead on a doctor in Sacramento area! I am in the Fresno area, but that's only three hours from here and worth the drive if this guy is as good and as affordable as you say. One question: Does he support patients in SSDI claims? I need to ask because I may be heading down that road. In any case, if things don't work out with Rosenbaum or I simply can't afford to continue with him in the future (which is inevitable) I will definitely look into seeing this fellow. I am also glad to hear from Adl about another option. Same question though: Does he support SSDI claims? I am having a tough time addresssing this issue (emotionally because I feel like it's a defeat for me; also I hate dealing with govt. types). So I need someone who is sensitive to this and able to write SSDI reports that those people will listen to.

    Anyway, again. Thank you. Thank you. This is very valuable info to me.

  16. hollie9

    hollie9 New Member

    Dr. Ryll does help people with SSDI claims although I haven't been through it with him. I can't see him writing long reports but he probably has plenty of already written reports that he uses generically.

    I may go down that road too. I've spoken with his bookeeper who told me to start keeping a journal of all incidents of what I couldn't do because of illness and how I feel. If I heard her right, you can still make some money so she told me to start applying about a year before I think I will be quitting work.

    She also says we can get Medicare insurance 3 years after going on SSDI. That would be great.

    In short, he apparently has helped many people through this.

  17. pearls

    pearls New Member

    Please read my previous comments in this thread again about the chiropractor in Selma. In my first post, I may have given the wrong impression about him, so I have amended it.

  18. kjan9

    kjan9 New Member

    He still has contact info on his web site. and instructions for appts. whats that all about.
    Back to LW. hope you found someone. I was going out there hoping you'd be near Fontana . Wonder if you're local Kaiser could link you with an associate of his?
    I wish I could find someone linked/consulting with Dr. Teitelbaum right now. But maybe the specialist I know here locally does. I'm still in the process of picking up newly found info on the web. But will contact my doc soon.
  19. lilrascal

    lilrascal New Member

    I've been going to a clinic for the past year that specializes in immune-related illnesses, and they have been wonderful. They just added a new female doctor who specializes in CFS/FM. Their staff is great, and they file insurance. They are located in Fountain Valley, not far from John Wayne airport.

    Center for Special Immunology (CSI)

    Hope this helps!
  20. LW

    LW Member

    Thanks for the additional info on Dr. Ryll and the clinic in S. Calif. All of this is great news! Gives me (and all of us) other options down the road. While I live in Central Calif., I'm willing to travel anywhere in the state to get proper health care. I have my second apt. with Dr. Rosenbaum next Wed. I'll let you all know how that goes when I return from the trip up north.

    A note to kjan9(Karen?): I have Blue Cross, not Kaiser. But I would encourage you to push your doctors at Kaiser to refer you to a CFS specialist (either within or without Kaiser in CA). I know if they can't help you medically, and you keep pushing them, they eventually make referals to outside specialists and pay the bills. With regard to Dr. Teitelbaum, I guess the quickest way to find out if he has any contacts
    within Kaiser is to contact his office and ask his staff directly. He must have a website. Anyway, you have nothing to loose. LW