Looking for LLMD in norther Calif.

Discussion in 'Fibromyalgia Main Forum' started by lilbird, Sep 18, 2005.

  1. lilbird

    lilbird New Member

    I am going to the FFC in Los Angeles and have DXed with cronic Lyme. I would like to find a LLMD in my area. I am in Sonoma County, north of San Francisco. I woul be willing to travel to see a good Dr.

    Cathy
  2. pumpkinpatch

    pumpkinpatch New Member

    So glad you posted today. I'm one hurting unit! My pain has been so magnified and stiff sore neck. Are you feeling the same way! Getting worse everyday. The antibiotics are really kicking my butt.

    I have been in contact with the Canadian LLMD and he is 7 hr. drive for me. He even e-mailed me his cell phone number.

    Will be talking to Dr. from Denver this week. At this rate I'm going to be horizontal.

    Cindy



    [This Message was Edited on 09/18/2005]
  3. chelebelle05

    chelebelle05 New Member

    What is FFC? and what is a LLMD? I need to find someone to help me deal with my fibromyalgia and I am in Placer County, north of Sacramento.

    Thanks for any help.

    Chele
  4. Wasabi

    Wasabi New Member

    I've heard that Dr. Raphael Stricker is one of the best Lyme doctors on the West Coast. I think he's in San Francisco. He's the doctor of writer Amy Tan who was diagnosed with late stage Lyme disease. Here is some information on Dr. Stricker.

    http://www.usmamed.com/00resources/htm/cv.htm
  5. Wasabi

    Wasabi New Member

    I recommend my doctor, Michael Powell, who has a Fibromyalgia/Chronic Fatigue clinic in Sacramento. He addresses underlying causes of these illnesses, whether chronic infections or hormonal imbalances, physical or emotional stress, etc.

    If you're willing to invest effort, time, and money into getting well, Dr. Powell is very good. Most of his patients are "back to normal" after one year of treatment. Here is his web site:

    http://www.fmtlc.com/contact.html

    I've been seeing Dr. Powell since May of this year and have seen significant improvement already.
  6. bct

    bct Well-Known Member

    Last I heard was no longer taking new patients. I would like to see him myself, since I believe I have chronic Lyme.

    I'm in Humboldt Co., Ca. I'll follow this thread, Cathy, and maybe we can both find some help.

    There is an LLMD in Nevada City, near Tahoe I guess. His name is Dr. Harris; phone is 530-470-9184. We surely should be able to find someone closer to both of us though, in Davis, maybe.

    The Lyme boards are difficult for me to negotiate, and I

    haven't had much luck with them so far.

    Good Luck,
    Barry

    P.S. What was your diagnostic test?
  7. lilbird

    lilbird New Member

    Hi Cindy, I am the same way. How weird that we seem to be at the same place at the same time. The morning seem to be ok, but by 10 or 11 I start to go down hill. Today I had major diarrhea several times. Then I just fell into bed. I just got back up. I'm feeling a little better, but very sore and ache. I saw you are looking into seeing a LLMD. I think a second opinion on protocol is a good idea. Are you taking anything for the herxing? Maybe he can put you on something to help. If you get any worse you should call him tomorrow.

    I hope you feel better, talk to you soon,
    Cahty
  8. lilbird

    lilbird New Member

    Wasabi and tahoeteddy thanks for the info. San Francisco is only about an hour and a half from me. I hope to find someone that takes my insurance at this point.

    bct, I sent off an e-mail last night for a Dr. referral in my area. I did tell them I was willing to travel for a good Dr. I will post that info when I get it. What part of Humboldt Co are you in, if you don't mind sharing? My brother is in Cresent City, I think thats still Humboldt Co. Davis is a good idea. Really good idea, why didn't I think of that. I have some old conections to Davis. Maybe they could point me in the right direction.

    Chele. no dumb questions here, we are all learning. FFC stands for Fibro/Fatiue Center. There are a dozen or so across the country. Do a search, there are some of us that are going to them. LLMD is a Lyme Literat MD.

    Take care of yourselves.

    Cathy

  9. sapphire

    sapphire New Member

    For those of you looking for an LLMD you can go to lymenet and post there and they will help you find one, hopefully close to you. I have to travel about 8 hours to see mine but he is worth it. He is in MO.

    For those of you that are herxing my dr says to detox. He recommends lots of water, activated charcoal, and an infared sauna. These are his favorites but there are other ways. This really helps the herxing alot.

    Take care,
    Sapphire
  10. CAAnnieB

    CAAnnieB New Member

    Here's a very good website on Lyme. It is part of Melissa Kaplan's main site. This woman is very active in the Sonoma County NeuroImmune Disorders support group. (The Carousel Network...They also have a great website!)

    www.anapsid.org/lyme/index.html (Informative site)

    Melissa is SO knowledgeable re: Lyme. She has personal experience with Lyme, FM & CFIDS.

    You might be able to E-mail her if you want her recommendations for Dr's. She's in the Santa Rosa area. I think she sees Dr. Eric Gordon.

    Hope you find a great doc!

    Blessings,

    Annie B.
  11. lilbird

    lilbird New Member

    Hi, we have talked before. Thank you for the reminder of Dr. Gordon. His name keeps popping up in my research. But I had forgotten about him. Memory is bad.

    How have you been feeling? Do you still go to the meetings? I never did make it to one.
    Cathy
  12. june-bug

    june-bug New Member

    Lilibird , I too live in sonoma county! I also have chronic lyme and fibromyalgia. The lyme literate Dr.s in my area are Dr. Gordon and Dr. Bouche (I probably misspelled the second ones last name) also there is Dr. stricker in SF(hes not taking new patients). Since I was diagnosed 2 years ago by a reumatologist in Santa Rosa named Lisa Kremmer I have had 1 month of IV rocephin and cut off after that. I also know people who have lyme. One sees Dr. Stricker, one sees Gordon, and one sees bouche. none of them have seen any significant improvement after being treated from 3-9 YEARS and have litteraly gone broke paying for their own treatment. I am also watching out for a good LLMD. These are the reccommended Dr.s ? one of them is also being accused with using needles contaminated with hepatitus c and infecting patients. I have 2 friends that both see Dr. Bouche and recieve conflicting answers for the same questions when they compare notes. Be careful just because a Dr. is recommended by Lyme.net or Igenix lab doesnt mean they can cure you. It just means they believe in chronic lyme and attempt to experiment with different things to make you better and you have to be ready to be a guinea pig. I really believe there are good ethical lyme Dr.s out there for us, Look for people who have been better for at least 6 months. Maybe ask the docs for references from former patients? Let me know if you get any tips on a Dr. with a good track record and patients who have at least improved. Keep me posted. By the way , who is the doctor that diagnosed you? June-Bug
    [This Message was Edited on 09/18/2005]
  13. lilbird

    lilbird New Member

    Hi, nice to meet ya. Thanks for the infor on the Dr. It is really good to know that people are seeing these Dr. and not seeing any improvment. I also know someone that has lyme and I think is seeing Dr. Gordon. I do not think she is getting better. Maybe even worse.

    I was DX by Dr. Whightman from the FFC in Los Angeles. I like him, but he is so far away, I am paying all out of pocket, and he does not have me on ABX but herbs. I have been herxing, so I guess they are working. I have an appt. with him next Monday. I am going to talk to him about ABX, and why he does not have me on them. Lets keep looking. Someone is sure to turn up.

    What part of Sonoma Co. are you from. I'm on the coast.

    Cathy
  14. CAAnnieB

    CAAnnieB New Member

    Yes, I thought we had "talked" before! Sorry if I'm repeating myself! But I have much respect for Melissa & if I had Lyme; I'd sure be picking her brain (which is full of Lyme info!)! Besides that, she's just a very nice woman to talk to...very supportive.

    I have not made it to the Carousel meetings yet this year as they changed the location to Sebastopol...It's a longer drive for me. I am on their E-mail newsletter list, so I check out who the guest speakers are going to be. If it was someone truly outstanding or a topic I really was interested in ; I'd make the effort to go.

    I'm also getting slightly burned out / overwhelmed with info these days. I love coming here, but my head begins to spin sometimes...Not knowing which way to turn for treatment. I've tried conventional medicine, alternative medicine, herbs/ supplements, relaxation, etc,etc...I'm really discouraged & WORN out!

    Sometimes, it can just get so exhausting trying to figure out which direction to go for healing & treatment. I think everybody is just "wingin' it" these days. I pray that some day they will figure out these DD's & have more effective treatments for us. Right now, I feel like a Guinea pig.

    I just got a CPAP machine for mild Sleep Apnea/ Upper Airway Resistance Syndrome last week. So far, after just 4 nights, I have experienced a HUGE relief from my usual upper body pain! I think my muscular problems were aggravated by not getting restorative sleep & the muscles working overtime to pull in oxygen during Hypopnic episodes throughout the night. Time will tell, but I'm hoping to see major improvement in my quality of life because of the CPAP treatment!

    When I can afford it, I see Lois Johnson in Santa Rosa.(I probably told you this before!) She's an MD who specializes in herbs & supplements. I've brought up the Lyme question before but she doesn't feel that I have the typical symptoms she has seen in her practice. She said she'd write the order for Igenix lab test, but I'm going broke with testing & treatments not covered by insurance. ):

    Good luck to you in finding just the right Dr. to work with. How did you like the FFC in LA? Do they have any Lyme experts?

    Take good care,

    Annie B.
    [This Message was Edited on 09/19/2005]
  15. CAAnnieB

    CAAnnieB New Member

    Wow, a fellow Sonoma County person!

    Would you share where you live? I'm in Healdsburg.

    Did you like Dr. Kremer? I went to her because my absolutely all-time favorite Rheumy, Dr. Elizabeth Spencer-Smith, retired. I did not care for Dr. Kremer. She didn't have much to offer me as far as treating my Fibro. Just curious what your opinion was? I haven't seen her in quite some time. Maybe she's more up on FM treatments now...

    Have you found any other health care providers who have helped you in the area? My Family Dr. has been very supportive, but he admits that most Dr's just don't know how to effectively treat FM...I have found that out by going to many specialists in this area & in S.F. area.

    Who is the Dr. reusing needles?!!!! Yikes!!! That is unbelieveable!

    Blessings,

    Annie B.
  16. lilbird

    lilbird New Member

    I too saw Dr. Kramer about a year ago. I did not care for her either. Same as you Ann, just didn't offer much, just that I had FM.

    It is nice to talk to someone from the area. I don't seem to meet many around here that are having the problems I am having.

    Cathy
  17. june-bug

    june-bug New Member

    We all live so near to each other!! I am in Rohnert Park, I grew up in Sonoma County. Wow!! About Lisa Kremer, My doc referred me thinking I might have auto immune stuff. Her first dx was fibro and she was adement that I probably would never really know if I had lyme because of the testing, etc. but after I talked her in to testing me for lyme and used igenix lab she said she was sure I had chronic lyme, I was Igm positive but Igg negative. Anyway after the one month of IV abx and no improvement (I actually felt worse probably herxing) She said the lyme is dead and you cant kill it twice and it was hilarious how fast she wanted to get rid of me . She practically ran away saying It wasnt necessary to see her again I would gradually get better over the next 12 mos, guess what?? its been over 12 mos and nothing. I also saw Dr. Waxman in Santa Rosa who gave his second opinion that I had fibro but ran away from the lyme issue. He offered to treat me with a dopamine uptake drug (parkinsons medicine) but I cant mess with prescriptions because of terrible side effects such as hairloss. Dr. Gordon is the guy with the dirty needles, that is what I heard from a friend in the medical field locally. So Im rambling now.... but its great having found people in my area!! Take care, June-Bug
  18. lilbird

    lilbird New Member

    WOW, we are close, I'm Rohnet Park about 3 times a week. I do most of my shopping there sense they opened the Costco there. I also go to University of Sports.

    The three of us should really get together sometime, it would be great for all of us to have a real shoulder.

    I went to Dr. Waxman a couple of times. I thought he was a wacko. He was just so strange. The last time I saw him he was being very racial. Thats when I went to Lisa Kraimer.

    And the list goes on, but to make a long story short, I got tiered of going to Dr. that just wanted to give me a new med to help with the symtoms, I wanted to get to the bottom of it all so I started going to the FFC in L.A.

    I know someone that goes to Dr. Gordon. She has Lyme. She is getting worse. She is starting to go a little crazy. Its really scary.

    I think we need to find a good Dr. in our area. I do not beleave Dr. Kraimer gave you good advise. If you are testing positive for lyme and have symtoms you need to be treating it.

    Cathy
  19. june-bug

    june-bug New Member

    Dr. Waxman is a strange bird, thats why I never went back to him. I have an HMO so Im limited to who I can see. My primary Dr. just laughed when I told her about Waxman and said thats why she sent me to Kremer. I have a great primary but she admits to not knowing about lyme, shes undecided on what she thinks about the controversy. I hope there is more research in the future that can help us. I think lyme is too invasive for herbs to kill. We need abx. My friend is trying the diflucan penicillin protocol but hasnt felt better yet. Tell me, what test did you take for lyme? were you positive Igg and IGM? I have SOOO many questions. It would be great to chit chat in person but exchanging info on line is RISKY.... Its great that you exercise, I know about university of sports, Its a good place. I work at a different gym over in cotati next to Olivers, I'm the enrollment manager...Ironic that I went from athletic to pathetic, though. My work outs are wimpy now. We have a huge indoor pool. Ive heard Aqua Aerobics is good for chronic pain sufferers but I do the elliptical for cardio. If you know where it is Id be happy to comp you a visit sometime.
    Hope your feeling well,
    Angelina
  20. CAAnnieB

    CAAnnieB New Member

    Hey neighbors! Pretty neat that we live so close to each other! My sister lives in Rohnert Park & my oldest son goes to Sonoma State every day! Small world. Sorry we are brought together by the Fibro tho'...

    Cathy, you mentioned not having many people around you with FM. Well, my situation is just the opposite! I'm sure that my husband has Fibro. Possibly one of my sons...My sister does. (Altho' she is one of the lucky ones! She is without symptoms more than she is with symptoms. And her symptoms are mild when they do occur.) In my old neighborhood; there were at least 4 of us within a few blocks who had been diagnosed with FM.

    At my church; there are at least 6 of us FMers. It seems like it's an epidemic around here! This makes me wonder how much of an impact environment has on our bodies. I'm sure we have the genetic predisposition, but the FM rate in my area seems to be very high, I think.

    How funny, your comments about Waxman! I refuse to go to him based on reports I have heard from friends who have seen him. One friend with acute Rheumatoid would end up in tears at every appointment with him! She eventually took her hubby to her appts because she'd get so upset; she wouldn't remember his advice/ directions. How pathetic. I tried to get her to see how disrespectful he was being to her. She did try going to UCSF for awhile, but didn't like the long commute & difficulty in telephone communication. Thankfully, she eventually went into remission! She wasn't the only one who told me Waxman horror stories...I don't care how knowledgeable he is...If I don't have a good rapport with my Dr, it's not worth it to me.

    I like Lois Johnson, but she is expensive for me. She has recommended 14 different herbs/ supplements over the past few years. There is NO way I could afford to take all of them. So I have chosen the ones which I feel are the most beneficial to me. She has her own Herbal Pharmacy & actually her prices are alittle better than the local health food/ health supplement stores. I'm not sure how much experience she has with Lyme, but you might want to call her office to find out what her protocol is. She is an excellent listener. She is also probably a major part of why I was awarded SSDI disability on my first try.(Her reports are superb.)

    Hope you are both having a good day. I am actually feeling MUCH better this week due to starting on a CPAP machine. I will do a seperate post about my success soon...So far, it's only been 6 nights on the CPAP, but a ton of my upper body pain has been lifted (First time in 12 years!) and my energy is returning! Amazing what sleep and proper oxygen can do for a body!

    Take good care,

    Anne
    [This Message was Edited on 09/21/2005]