Los Angeles doctors, please

Discussion in 'Fibromyalgia Main Forum' started by onedaymagpie, Apr 26, 2009.

  1. onedaymagpie

    onedaymagpie New Member

    Hello there

    Does anyone have a Los Angeles doctor for treating CFS that they are really happy with? I would greatly appreciate any referrals. Thank you.
  2. onedaymagpie

    onedaymagpie New Member

    Thank you for your response. Although CFS is my primary condition, I also have FM. I have gone to Holtorf clinic; but the expense was too significant. While there seemed to be a focus on profit there, overall, they also seem very experienced in this field.

    Anyway, I was thinking, there must be other doctors in such a large area (LA, but I am kind of South Bay, so SM is great) that also focus on our conditions without such cost and no insurance accepted.

    I am going to look into the doctors that you listed and send many thanks to you.
  3. panthere

    panthere Member

    I see Dr. Gruenn at Longevity Center. I really like him and his office, really efficient. I saw Dr. Allen (he opened his own office couple of months back, used to be part of Longevity), but I didn't really get anything new from him.

    I saw Dr. Sudarsky, but I really didn't click with her. She is a nice lady, but is not very good at digging for why you are sick...

  4. onedaymagpie

    onedaymagpie New Member

    Does anyone else have additional doctor input??
  5. onedaymagpie

    onedaymagpie New Member

    LA doctors - bump

    maybe someone else will see this post?
  6. outofstep

    outofstep Member

    you have some very reputable viral drs out there for CFS-Dr. Chia in Torrance (focus is on enterovirus in CFS) and Dr. Motoya up at Stanford (sort of a haul for you but he does HHV-6 research for CFS).
  7. ladybugmandy

    ladybugmandy Member

    i'd get on the waiting list for montoya in case the other docs don't work out. montoya and lerner are joining forces - they are the ones to see!
  8. ulala

    ulala New Member

    and was told that he's not taking any new patients. He treats with Valcyte?
  9. LindaJones

    LindaJones New Member

    I live in the South Bay and I am looking for a doctor also.
    There is a fibromyalgia support group that meets at Torrance Memorial Hospital.
    I know some doctors read all the information about cfs and are very knowledgeable.[This Message was Edited on 05/07/2009]
  10. cfsgeorge

    cfsgeorge New Member

    I do believe my next step in treating CFS is to get together with a CFS specialist to prescribe Xyrem. i believe this "natural" drug will have the affect of actually "curing" by repairing you with the GH as you sleep like a baby. The feedbacks from FMS patients in the xyrem clinical trials has been phenomenal.

    i've contacted jazz pharm for a lists of docs in their program but they will not give out a list anymore since they got fined for promoting it's use other than narcolepsy. It will be approved by the fda for FMS next year and for CFS shortly afterwards.

    Does anyone know of an affordable(NO FFC) or takes private insurance CFS specialist in southern california that is in the jazz program and can prescribe xyrem? thanks in advance!
  11. cfsgeorge

    cfsgeorge New Member

  12. ulala

    ulala New Member

    Dr. Stuart Silverman in Beverly Hills on Wilshire Blvd. prescribes Xyrem. I was on it for years.. Let me know if you need any more inforamtion. He also takes insurance.

    Best wishes!
  13. cfsgeorge

    cfsgeorge New Member

    I have heard of Dr Silverman and I think he was involved in the xyrem clinical trials for FM. I assumed he was going to be pricey, but i'll call his office and find out his rates. I'm convinced that xyrem can help me with refreshing sleep(deep) sleep so that my body and mind can heal itself.

    I know Dr Silverman is a rheumy who treats FM. Does he treat CFS as well? Can you tell me if you have FM and/or CFS and if xyrem helped you or not. thanks a bunch!
  14. ulala

    ulala New Member

    Yes, Dr. Silverman conducted Xyrem clinical trials and I was lucky enough to get into the trials. Xyrem is a miracle for sleeping. It knocks you out in minutes. You usually wake up after 4 hours and have to take another dose for the next four hours. No alcohol for four hours before taking Xyrem and you're only supposed to have one drink. You will probably have to have a sleep study done. During the clinical trials I think I had four sleep studies. That wa a pain, we stayed overnight at a lodge/hotel in Sherman Oaks. I can't think of the name of it, maybe Sportsman Lodge? Didn't get much sleep but you could order anything off the dinner menu and breakfast menu. That was fun!

    I took it for almost three years and just wanted to get off of it. I haven't taken it for about a year.

    Dr. Silverman treats FM. I have CFS and FM. I haven't seen him in several months. He's also a specialist in osteoporosis. There's a Dr. Silver, who shares an office with Dr. Silverman. I've heard he's beter than Dr. Silverman but I don't know about that. You may want to find out about him. Dr. SIlverman definitely prescribes Xyrem. He's a pretty straightforward guy and can seem a bit, not standoff-ish (is that a word), but he's not a warm and fuzzy guy? I hope that you can see him. Let me know if you see him. Good luck!
  15. cfsgeorge

    cfsgeorge New Member

    thank you again for all the info on Dr. Silverman. You covered my questions about him and the rest i'll just have to find out as a patient.

    Can i ask how xyrem worked out for you? You say it's a miracle for sleeping, but that you stopped taking it after 3 years. Is your CFS/FM any better after using xyrem? Do you recommend this drug for CFS and FM?
  16. cfsgeorge

    cfsgeorge New Member

    There's gotta be more recs in southern california. I'm looking for a CFS specialist who looks at the "big picture". I don't have FM nor any pain so i'm not looking for an FM specialist or a rheumatologist. Please share. thanks!
  17. Andrew111

    Andrew111 Member

    If by "big picture" you mean an expert on CFS who keeps up with all the experimental treatments, etc. I have yet to meet one. There are, however, doctors in Los Angeles who take CFS seriously and have several protocols they work with. And they will try what they can to help you. You can find some on the cocure list or search here for threads.

    Oh, one more thing. I think Holtorf does keep up on all the research. But I suggest you search here for the thread I started where I asked for feedback on Holtorf. He gets mixed reviews.