Discussion in 'Fibromyalgia Main Forum' started by Cazgee, Jan 11, 2003.

  1. Cazgee

    Cazgee New Member

    Have been reading with interest the various comments about the effectiveness, or not, of the antibiotic therapy. I've had the disease for 10 years+ now, and have resisted taking antibiotics. Now it would seem that they're not so efffective in knocking the Mycoplasma.

    I had a very high count at my last test, and would be very interested in hearing whether anyone has found a successful treatment to give these beasties the old heave ho?

    I am currently on the up after a 10 month bout following a return to work full time. Not a good idea, but it felt good to be well enough, initially, to do it and not have the brain fog.

    My current supplement therapy includes Glyco Nutrients and MSM, which I find give me an almost instant improvement,BUT I've found that 2 months on, and 2 months off is definitely the way to go.

    Hang in there people. This thing is manageable if we just listen to our bodies, and don't fight the illness.

    Travelling gently
  2. Shirl

    Shirl New Member

    Hi Cazgee, welcome to the board. Glad to have you join us.

    Yes, I agree with you 110 per cent, if we quit fighting so hard to be what we used to be, and learn to pace our lives around this illness, we can manage it.

    I have finally learned that lesson, and am doing just great for the first time in the 20 years that I have Fibro.

    I am not into the mycoplasma's, so will let the others discuss this one with you. Our other Moderator is very well informed with this, she will be back probably Monday.

    I take supplements, and low dose Xanax once a day, and am doing just fine now. Not cured, and not without any pain, but am living my life is such a better manner now that I have accepted my limitations.

    Again, welcome to the board, and hope we hear from you often.

    Shalom, Shirl
  3. Cazgee

    Cazgee New Member

    Hi Madwolf and other sufferers

    Thanks for replying to my post. I'm glad that you are having success with the antibiotics, but from what I've read it doesn't touch the Mycoplasma.

    The reason I've resisted the abx therapy is because I figure if there are still some good bugs left in my colon, I want to hold onto them, not knock the little darlings out. I take pro biotics from time to time to keep the flora healthy, but the baddies still get out of control and cause bloating and nausea.

    Just had a really good day. Hope you all have too.

  4. Cazgee

    Cazgee New Member

    Thanks, Shirl for the welcome.

    Yes, I'm a slow learner too, but when the brain sludge is present it's hard to remember what worked the last time I relapsed, and also what not to do to. The urge to keep achieving is a hard one to resist, so I set myself goals for the day, and them halve them. The is a workable strategy for me.

  5. klutzo

    klutzo New Member

    I too have resisted the antibiotics. I was taught, in Naturopathic training, that there is almost nothing worse for you than antibiotics. They destory your gut balance, and life and death begins in the gut. I have found that even a ton of probiotics is not enough when taking these strong drugs. They also weaken your immune system, something we do not need any more of.
    I will probably need to see people totally well and back to work before I do this to myself. So far, I've heard people say it helps, but have not seen their lives really change. I am open to being proven wrong any time. I welcome any solution, adn am watching Madwolf's treatment of his patients with interest.
    Also, and you can credit this or not as you see fit, I had a session with a very famous psychic once, and he told me "whatever you do, don't take antibiotics because they will only make it worse". He also told me I had FMS (he had no previous info about me) and that it is always caused by a virus. As I'm sure you know, viruses don't respond to antibiotics.
    Besides, I may have inadvertently tried this therapy without realizing it. I was misdiagnosed as having a subclinical UTI once, and put on low dose Cipro (500 mgs. daily, which I understand from reading is the correct dose for killing the mycoplasmas) for over 2 months before I nixed it and went to another GYN, who correctly dx'd me with vulvar vestibulitis (a problem associated with FMS). I had no change in my FMS during the time I was on Cipro.
    I think that those who have bacterial infections, probably have secondary opportunistic ones, but they are not the root cause of the FMS. Of course that does not mean you should not try to treat a secondary infection. I just think long-term antibiotics may do more harm than good. Just my opinion.
  6. Cazgee

    Cazgee New Member

    A year ago I was really well, and achieved it without antibiotics. I felt better than I had for 20 years, but about a month after returning to full time work I developed ear ache and started waking up with that clogged up feeling.

    The ear ache wouldn't go away no matter what I threw at it, including dropping warm onion juice into my ears, and using enough ear candles to start my own factory. I'd kept taking the MSM and Glyconutrients and wondered why they didn't seem to be "working". After reading Paul Cheney's theory about treating the condition on a cyclical basis, the lights came on, as I'd always thought in the past that the body becomes accustomed to what we put in it, and on it. For example, my hair always seems to respond positively to a change in shampoo from to time.

    I'm now back on the Glyconutrients and MSM after a break of several months, and am feeling so much better in every way, but will stop after two months, and have a break. This is going to be difficult to do and will require some courage on my part, but we have to be our own "guinea pigs" with the disease.


  7. Cazgee

    Cazgee New Member

    Hi Mad Wolf

    You could be right about the yeast infection, but I don't have any other symptoms of Candida.

    I eliminated white flour and sugar from my diet back in the 80's, and figure I'd need to eat a truck load of yoghurt to kill any yeast infection.

    There are some new probiotics just released on the market here (Australia), which contain many more good bacteria than the acidophullus, lactobacillus, and bifidus afforded us in the past. So I'll give them a try.

    My homeopath says that the bloated tum is associated with the virus, and he seems to have a pretty good handle on what's going on.

  8. Mikie

    Mikie Moderator

    You mention having a "high count." Unless you are having PCR DNA tests for the mycoplasmas, there is no reliable way to discern whether or not you are suffering from a chronic mycoplasma infection.

    You also mention that your bloat is connected to the virus. What virus? Mycoplasmas are bacteria; antibiotics are not used to treat viruses.

    Mycoplasmas are stealth bacteria, living below the radar of the immune system. They are very slow to replicate, but when they do, they kill their host cells and go into the bloodstream in search of new cells to invade. The antibiotics do not directly kill the mycoplasmas; they starve them out, keeping them from replicating. Since the mycoplasmas replicate slowly, it takes a long time for the antibiotics to starve them out.

    I believe the only time the mycoplasmas are truly vulnerable is when they are in the bloodstream. Mycoplasmas, like stealth viruses, have learned to use the body's own DNA to hide under to avoid detection by the immune system. This makes them very, very dangerous. When they are in the bloodstream, dragging some of the body's DNA with them, there is a danger that the immune system will identify them as foreign matter. If the system also sees its own DNA as foreign matter and attacks, there is a very good chance of contracting an autoimmune illness like MS or Lupus. It is no accident that many with MS or Lupus also have FMS.

    I have been on the antibiotics for more than a year. When I have tried to cycle off of them, my IBS, migraine-type headaches, chronic sore throat, and swollen lymph nodes return. Also, I feel like I have the worst case of the flu. There are worse things than antibiotics and mycoplasmas are some of those things.

    I have always used probiotics and have alsolutely no stomach problems when taking the antibiotics. Would I rather not have to take them? Of course. Do I want to get rid of the danger that the mycoplasmas pose? Absolutely and that's why I will take the antibiotics for however long it takes to rid my body of the mycoplasma threat, even if it takes years.

    Love, Mikie

  9. Mikie

    Mikie Moderator

    I also use the Jarro-Dophilus which is sold here and I believe it is the best probiotic I have ever used. It has good strains of bacteria and is designed to reach the gut where the good bacteria can colonize. Anyone using probiotics should refrigerate them after opening them.

    Taking enzymes is another good way to protect the gut.

    Love, Mikie