To Mikie or anyonequestions about mycoplasma

Discussion in 'Fibromyalgia Main Forum' started by krissy888, Jun 20, 2006.

  1. krissy888

    krissy888 New Member

    HI, My name is Kristy and I have been reading your posts about mycoplasma.

    I have symptoms of fibro but don't know if I have it because if doesn't affect my life too much. I have tender points deep in my shoulders,sides,back and can't turn my neck all of way without pain. I also don't have to energy I use to have but I am able to most things.I am 30 years old.

    I am currently going to a reproductive immunologist(infertility) and they said that certain bacterias, infections can come with fibro. My immune system is all out of whack. I have very low killer cells but high killer cell activity. I also have a blood clotting disorder-APA's in the blood. What is causing this to my immune system? What can I take to help it?

    Two years ago I was very stressed and depressed and it seems like every since then I have started to feel fibro symptoms and they won't go away. How do you get tested for mycoplasma, can your doctor do this or is this a special test? What else can I be tested for?

    Please help an thanks!!!
  2. findmind

    findmind New Member

    Go to immed.org. That's the expert on mycoplasma and CFS/FM, Dr. Garth Nicolson.

    Read all you can.

    You can get blood drawn in your town and ship exactly the way Dr. Nicolson's protocol requires.

    His treatment recommendtions are also on the site.

    I'm sure Mikie will be here soon to help you....

    There's always hope!
    findmind
  3. Mikie

    Mikie Moderator

    I'm so sorry that you are sick. Your docs are right; we are vulnerable to infections of opportunity. No one knows why our immune systems don't work normally. Pathogens which would not be harmful to others can cause chronic infections in people with our illnesses. Pathogens which would make others sick and then they would recover can cause chronic infections in us which go undetected by our immune systems.

    It isn't just mycoplasmas, but a whole host of other infections: Lyme, chlamydia, CMV, EBV, and HHV-6, just to name a few.

    Findmind has given you good advice to go to Dr. Nicolson's website. There is info on PCR DNA testing for mycoplasma infections and the protocol for antibiotic therapy. My mycoplasma infection was active in 1990 and was caught in a blood test when I came down with what I thought was the flu. Unfortunately, back then, no one knew that it takes at least six months on antibiotics to get rid of the infection. It went chronic in my body. I have not had the DNA testing done. My doc just started my on the Doxycycline a few years back and withing three days, I had a big Herxheimer reaction which signaled that there was a massive killoff of bacteria in my body. It took 2 1/2 years on the Doxy, pulsing them later on, to get the infection under control.

    Dr. Nicolson says that the mycoplasmas may never completely go away. There can be cysts deep inside the body which can reactivate when we get run down. I believe this has happened and I keep the Doxy on hand.

    Many of us also have chronic infections from viruses in the Herpes Family, most notably HHV-6, EBV, and CMV. Many of us got Mono and just never got well.

    We can have chronic infections from bacteria, funguses, and/or viruses. Some of us have up to seven different chronic infections.

    Some docs use ABX and/or AV's empirically to see whether their patients benefit. Others, like the FFC's, do extensive testing.

    Good luck to you.

    Love, Mikie
  4. Hootie1

    Hootie1 New Member

    Spiritsky is going to think I am crazy- and yes, today I feel like I am.....

    I have EBV,HHV6, mycoplasma, c.pneumonia and candida. That's all (lol). I will start treatment for the bacterial in July and then the candida later.

    Is it possible to recover, in your opinion, without treating the virus's and infections?

    Thank you for your time Mikie, I always go back to you because I know that you have become very knowledgeable and are not a fly by night type of person.[This Message was Edited on 06/21/2006]
  5. Mikie

    Mikie Moderator

    Thank you so much for saying such kind things. I can't be a fly-by-night person as it takes sooooooo long to make progress with these illnesses :) Because I started treating my infections before the FFC's came along, I really want to stick around so people can see my progress. I think it's important not to set one's expectations too high in terms of finding any magic bullets nor recovering rapidly. People can see that I am making progress but that it's a slow journey.

    To answer your question--no, I absolutley do not believe we can achieve any healing as long as our bodies are full of infection, even when the infections are chronic low-level infections. I believe we must treat them with as many meds or treatments as necessary to get them under control. That may mean taking AV's, ABX, and antifungal meds, along with Heparin and transfer factors.

    In addition, I think it's really helpful to simultaneously try to build up the immune system. I've found colostrum, probiotics, and undenatured whey sold here to be helpful. Of course, lifestyle changes make a huge impract too. It's really a comprehensive approach which seems to work best.

    I'm sorry you have so many infections but you are probably not that unusual. Most people just don't know they have a bunch of infections going on. Some people only have one but some have as many as seven, according to studies.

    One last thing--I do not believe clearing up the infections will make us well. There is more going on with these illnesses. They make us more predisposed to infections, but that is just a side issue. Keeping the infections under control will help us to achieve some healing, hopefully to the point that we can live somewhat normal lives until there is a cure.

    Good luck to you and let us know how you are doing.

    Love, Mikie
  6. Hootie1

    Hootie1 New Member

    Thank you for centering me! You are a wonderful person.
  7. Mikie

    Mikie Moderator

    I am glad if this was helpful to you and thanks again for your kindness.

    Love, Mikie
  8. JolieLuLu

    JolieLuLu New Member

    Mickie-

    YOU need to write a book!!! I am very serious!!!
    You are the brightest light that I have seen thus far in this CFS/Fibro jurney. You need to be paid to be a patient advocate. Ever considfer it?

    Be Well,
    Jolie
  9. Hootie1

    Hootie1 New Member

    I totally agree!!!
  10. Mikie

    Mikie Moderator

    There is soooooo much I don't know. I do know a little bit about a few subjects and I try to share what I have learned with others. I think that is what this forum is all about. If we each share what we know, or suspect, it will help us all. Almost everything which has helped me is something I first heard about here. I am very grateful I found this place.

    Thanks again.

    Love, Mikie