to ldbgcoleman - re lyme and FFC

Discussion in 'Fibromyalgia Main Forum' started by sickasadog, Sep 15, 2005.

  1. sickasadog

    sickasadog New Member

    Hi there.

    I have seen many of your threads and have a question. I was just diagnosed w/ chronic neuro lyme after being diagnosed w/ CFS/FM for 10 years. I am no going to a LLMD for treatment. Prior to this, I was thinking about going to the FFC for treatment. I do have a friend who is going there now and was also just diagnosed with lyme, but she was not happy with the way the FFC handled things- she had to ask for the Igenex test even when lyme is so prevalent in CFS/FM patients and when they told her the diagnosis, it was like no big deal. (This was a different FFC from the one you go to I believe) Anyway, I was just wondering, as I am sure the FFC is very knowledgeable about CFS/FM, how comfortable do you feel in them handling the lyme and are they following you closely on meds? They put my friend on doxy and didn't really make a big deal about the lyme. My LLMD seems to think that the lyme is a huge part of my problem and has most likely created many of the symptoms which are now linked to CFS- meaning, it suppressed my immune system and gave the impression of CFS. He also feels that I do have FM, but that itis secondary to the lyme.

    Anyway, was just curious about the FFC and the way they are handling your lyme treatment. As I said, I go to a LLMD who does many of the things the FFC does (supplements, yeast, boost immunity, etc). I also started attending a lyme support group and they felt my friend should be seeing a LLMD rather than the CFS dr since lyme is so very serious and you really need someone very experienced with it (BTW- my friend's CFS dr at the FFC said it was the first case of lyme they had there, so obviously she has not treated manyt cases)

    What are your thoughts on this??

    Thanks,
    SD

    P.S. Hope you are feeling much better!!!
  2. ldbgcoleman

    ldbgcoleman New Member

    Sorry I won't be much help here because I did not have Lymnes. I have mycoplasma and EBV. KarateLady has Lymes and goes to the FFC and sarasmom has a daughter with Lymes. You may try one of them. Good Luck and I hope you get your answers! Lynn
  3. sickasadog

    sickasadog New Member

    i didn't realize that. You know for sure? That's great that you don't have lyme!
  4. BrendafromTX

    BrendafromTX New Member

    SD,
    Hello! I go to the FFC and I'm so glad I ran across your post tonight. I have been diagnosed with FMS, CFS, and Chronic Lyme. My mother also goes to FFC and has CFS and Chronic Lyme. When my doctor diagnosed me with Lyme, he acted like it was "no big deal". He just said that I have it and that they treat it with Cumanda and Burbur Detox and then went on to my other test results. So I get home and start doing research on Lyme and realize "this IS a BIG DEAL". I've been taking Cumanda for only 2 months, but recently I've been skeptical about it "curing" Lyme because I can't find any information on it doing so. My mother asked the nurse at the FFC if she could get some documentation on Cumanda and how it works to cure Lymes, and she was told they didn't have any information to give out on it.
    I think that is terrible. If they are expecting people to take Cumanda for Lyme, they should provide information or studies showing it's effectiveness, and not expect for people to rely on blind faith alone that it works.

    I have decided to see a Lyme Specialist in Dallas to get a second opinion. I can't get in with her until the end of October, but it will be worth the wait.

    I think that the FFC is GREAT at treating Fibro and CFS, but I'm not convinced that they know enough as much about Lyme as they say they do.

    This disease is too serious to be treated on blind faith(for me anyway). Although I'm still going to take Cumanda just in case it does work, but I'm open to other treatments as well. I just don't know which ones work.

    Have you heard of the Hyperbic Oxygen Treatments? Does anyone know if they work? What about antibiotics? How long would you have to be on them (and would you have to be on IV or oral)?

    I'm looking forward to seeing others postings on this topic as well.

    Take Care,
    Brenda
    [This Message was Edited on 09/15/2005]
  5. sickasadog

    sickasadog New Member

    so sorry you are going through so much. Was your lyme diagnosed by a positive igenex test?> did you have topush them for a test? My friend did.

    Anyway, I think you are 100% right in going to a LLMD. Mine treats alot of the same stuff the FFC treats. MyLLMD also feels that I do not have CFS or that CFS really is due to something underlying and in my case, it is lyme.

    Pursue treatment with a LLMD!!! They know what they are doing,. I am urging my friend to do the same.

    Take care and good luck in your recovery.

    -SD
  6. sickasadog

    sickasadog New Member

    I am on doxycycline and plaquenil- both oral meds. The dr wants to put me on IVs eventually since he definitely feels I have CNS involvement, but insurance is a killer. I am not sure how long I will have to be on them, but chronic lyme is not easy to treat and I have met some people on and off abx for quite a long time, sorry to say, but everyone is different. I am definitely going to tell my friend about your situation as well, if you don't mind. She really likes the FFC but does not think they know lyme that well, or take it very seriously. They just acted like it was just another thing wrong with her. Meanwhile, MY LLMD explained to me that Lyme acts much in the same way as CFS in that it suppresses your immune system and can cause secondary problems w/ thyroid, autoimmune stuff, adrenal problems, heavy metals, etc etc. Sounds like CFS???
  7. sickasadog

    sickasadog New Member

    The FFC and every dr that treats CFS/FM patients should know alot about lyme since many people w/ chronic lyme are often diagnosed w/ CFS./FM
  8. sickasadog

    sickasadog New Member

  9. karatelady52

    karatelady52 New Member

    Here's my take on it. I think the centers are so new that they are learning right along with us (for lyme I think they are right behind us actually.)

    They diagnosed me through Igenex (I go to the one Lynn goes to) and as we were going over my labs, Dr. B. said we would have to address the viruses last because the lyme was first and foremost. She definitely took it seriously.

    She started me on Heparin shots, (twice a day for hypercoagulation), she then put me on Biaxin which is a very strong ABx. I had such a hard time with it I called begging them to change it (not realizing the 4th week is a big herx week for lyme on any ABx). I found that out through Lymenet forum.

    She changed my ABx to Zithromax and Ceftin. I've heard only good things about Zithromax. AFter I get used to it (still working on it) I am to take Samento drops starting out with just a few and then the Cumunda. Dr. B. told me to start off slowly or I would have an awful time with herxing (which I am and she was right on about that.)

    The thing is, these centers have not had the experience with lyme like the LLMD's have. There are so many different ways to treat it depending on your age, whether its chronic or not, whether you have co-infections. Some LLMD's treat for co-infections whether you test positive or not because they say the tests are so unrealiable.

    I'm seriously thinking of looking into an LLMD because from what I've read, you can spend years spinning your wheels with antibiotics. I read on this forum (from Victoria) that her son's LLMD changes out his ABx every 4 weeks plus uses Flagyl one week a month. Flagyl kills the cyst form of Lyme. Regular antibiotics won't do that.

    I love the FFC. They are helping me with all my bio-identical hormones plus pain meds that I could never get with my other MD. Dr. B. is very open so I want to have this discussion with her on my next visit.

    So, that's where I am with the need to maybe find an LLMD somewhere in my area but I would love to stay with the FFC also.

    Sandy
  10. karatelady52

    karatelady52 New Member

    If you haven't already found this forum, go to Lymenet dot org and go to their discussions. I have learned a ton of information there on lyme.

    I'm going to get a folder to keep all the information in because I've printed out so much stuff I have it all over the place.

    I've read a lot about the alternatives like the hyperbaric oxygen, the Rife machine, Salt and Vit. C, etc., and most are of the opinion that antibiotics need to be taken for awhile. A lot of them use the Rife or Vit. C & salt after they've been on ABx's for a year or so. Some people pulse their antibiotics as maintenance. There are just so many variables that, to me, we need an LLMD with experience to help us.

    I really hate taking long term antibiotics but if that's what it takes to kill the lyme, I guess I'll have to for awhile anyway.

    Sandy
  11. ldbgcoleman

    ldbgcoleman New Member

    Hey Sandy glad to get an update on what you are up too. Sorry about the Herxing! Are you feeling better at all??? I have been thinking about you! Lynn
  12. karatelady52

    karatelady52 New Member

    Not yet, I'm learning its a long, long road. I think the herxing is telling me that lyme killing is happening.

    One lady with chronic lyme told me our immune systems are so supressed that we really need to take the antibiotics slowly and I'm finding that is helping me more than anything else.

    Hope you are doing better. I actually ended up making my last appointment on the same day you were having lunch with (forgot her name and her husband) but I was feeling so poorly that day my husband drove me down, I did the blood work quickly and came back home.

    I was thinking of you though.

    Sandy