mycoplasma/cfs pts...ASKING FOR:

Discussion in 'Fibromyalgia Main Forum' started by blazer, May 12, 2009.

  1. blazer

    blazer New Member

    Dear Friends of CFS:
    I am mostly on the Transfer Factor msg board/they have given me life back by the way.
    Also doing some anti biotics for the mycoplasma/read on Garth Nicholson's websites.../besides a great amount of specific supps for this condition. OK...
    and also asking for your help here:
    I am asking if any of you out there have seen Dr. Carol Ann Ryser M.D., Kansas City, Mo. ever before? She is on the information area here at ProHealth. She does a lot with transfer factors, antibiotics regarding Lyme and Mycoplasma infections...and any cfs problems. She is hard core into CFS and that is her life. They do run also a hard core appt. sched and up to daily treatments sometimes twice a day if needed. Intense testing and hours of one on one talking with her, the doctor. Now this is my concern. But, not a negative concern because if this is the real deal we'd all be very interested. Have any of YOU out there been to her, went through her program...if so please tell us your story. From what I understand and could be a tid bit off...but usual 2 grand a week. You heard me right. But all of course as we know the lingo..."it depends on what they do"...ok, so here and there off a bit..but the office gal there did tell me it does run about 2 Gs' a week. I love her research and work tho...
    Its all wonderful and out there! Are any of you a pt.???? Have any of you known of anybody that has seen her or what are the results after three months? Thanks to all, Blazer
  2. aftermath

    aftermath New Member

    I have no experience with Dr. Ryser.

    I have followed Dr. Nicholson's work on mycoplasma. A very large placebo controlled study of high-dose abx on Gulf War Syndrome threw cold water on his theory that mycoplasma is the cause of GWS. His theory on it being the mechanism behind CFS is has even weaker underpinnings.

    With regard to the infection treatment protocol...

    As someone with this illness, I know what it's like when you think you may have I found something that will help. We would also spend our last dollar on something that we knew had even a 20% chance of success.

    Still, as of right now, there is no reliable treatment for this illness.

    As someone who has thrown away tens of thousands of dollars in unsuccessful attempts to heal, I urge serious caution.

    I would not go anwhere near a treatment with a cost like that until it is proven effective in a placebo controlled study.

    That being said, I don't know if I would listen to my own advice if I were you. I know exactly how it feels to think "So what if it didn't work for 90% of the other people. It might work for me."

    My current view on this illness is that we should not be spending money on unproven treatments, but using it to fund the CAA to lobby for *real* research.
  3. ladybugmandy

    ladybugmandy Member

    TF actually helped you that much!!?? wow.

    is the TF message board on prohealth? i have never seen it...
  4. voorhees58

    voorhees58 New Member

    watch out--get an itemized list of all costs including supplements before you go
    make sure you know what you will have to pay daily for the treatment
  5. Mikie

    Mikie Moderator

    My CFIDS/ME was triggered by a mycoplasma infection; I lived next door to a military facility at the start of the first Gulf War. I likely was infected by a soldier with an active infection out in the holiday shopping crowds. I followed Dr. Nicolson's protocol with Doxycycline and have driven the mycoplasmas back into latency. If I get run down, they try to make a comeback and I take the Doxy to keep them in the latent stage. No one knows what causes GWI or CFIDS/ME for sure but tests have shown that PWC have higher levels of chronic infections of all kinds than the general population.

    Some with chronic mycoplasma infections, like those with Lyme, go decades before being diagnosed. In my case, the infection showed up in a blood test because the infection was active. Unfortunately, at the time I was infected, no one knew it takes at least six months on ABX to drive the infection into latency. It was 11 years before I discovered Dr. Nicolson. It took 2 1/2 years on the Doxy for me. Both Lyme and mycoplasmas can change form and hide out as cysts deep in the body's tissue.

    I got great help with the transfer factors. They stimulate the immune system against targeted pathogens. They are like little oral vaccines without having to use live or dead pathogens themselves. I am back on ProHealth's TF 200 for a "booster." Like with regular vaccines, immunity isn't permanent and one has to occasionally take them again for a short while.

    I also gave myself heparin injections to get rid of excess fibrin in my blood, likely caused by years of chronic infections. Stealth pathogens hid out in the clots of fibrin and trapped platelets and when the fibrin is gone, the pathogens flood the bloodstream where the immune system kills them off.

    All these were cutting-edge treatments at the time but have now become routine at many of the clinics and docs who treat our ailments. It is possible to do research, find a willing doc and do this on the cheap empirically. I was lucky to have interested and willing docs who responded to my research. BTW, all these treatments caused big Herx-like immune reactions before I felt better.

    It takes a whole regimen to heal and nothing is guaranteed, whether one does it on the cheap piece meal or through a clinic. Still, unless one is willing to try different treatments, the liklihood of healing is slim. Gather evidence and others' experiences and perform due diligence. When you know what you want to do, don't let anyone discourage you from trying. Best of luck to you.

    Love, Mikie