How many are on antibiotics for mycolasma fermentans

Discussion in 'Fibromyalgia Main Forum' started by Jolie, Mar 1, 2003.

  1. Jolie

    Jolie New Member


    Dear all,

    I've gone back on to Prof. Nicholson's protocol for ABX for mycoplasma fermentans.

    I was trying to avoid it, but since I am allergic to milk, I cannot take Immunopro, which Dr. Cheney thinks can wipe out mycoplasma.

    I was on antibiotics last year and was feeling beter; my joint pain just about completely went away. But then I got involved wtih an alternative M.D. who thought ultraviolet blood irradition could help my mycoplasma infection. With DR. Cheney's words ringing in my ears that
    Prof Nicholson's protocol COULD (caps emphasis is mine) make someone into a gut cripple for life, I went off the antibiotics.

    While many things improved with blood ultraviolet irradiation, Meyer's cocktails,and homeopathic injections for CFIDS, my joint pain continued to get worse and worse.

    I now think it was a big mistake to go off the ABX. I've been back on for 6 weeks and my joint pain has subsided significantly, and I'm feelign beter. I've been persuaded that with the proper probiotics and the proper timing of them, one does not need to become a gut cripple by following the high daly dosing of ABX that Prof. Nicholson recommends. (By the way, I'm taking Lederle brand Minocin. Mnay docotors have found that the generic does not
    work, and there is even a government bulletin on the web stating that the generic doesn't work)

    I would be grateful to hear peoples's experience being on Prof. Nicholson's protocol for mycoplasma fermentans.

    Thank you,

    Love,

    Jolie
  2. AJME

    AJME New Member

    I'm not on Anti-Biotic therapy but I have researched it much. I know MIKIE and JELLYBELLY are currently on it with others starting. MIKIE seems to have benefited much from it.

    I'm currently experimenting with Garlic a natural antibiotic to see what happens....I seem to be getting herx from taking it. If this fails I'll go to Doxycycline.

    I recently discovered a book at Amazon. Its called the "The New Arthritis Breakthrough" by Henry Scammell...the only medical therapy proven to produce longterm improvement & remission...RA, Lupus, Fibromyalgia, Scleroderma, Spondyloarthropy and other forms of Arthritis.

    If you go to Amazon you can read the reviews of the book...about 23 people (most with Arthritis) who have read book and benefited from the ABX treatment. You can read their reviews of the book there or you can do a search here
    for AJME and look for my subject headline of "Book on Antibioic therapy for Fibromyalgia" and it will have all the Book reviews listed.

    If you do a search at Google "The Road Back"...you'll find a site dedicated to the treatment of RA, FM and other diseases with ABX.

    Thanks!
  3. Mikie

    Mikie Moderator

    I am actually weaning myself off the Doxy because I was able to go two weeks off them without symptoms. Jelly and I decided that no protocol exists for going off the ABX and that one is needed to help prevent an autoimmune rebound response. This could bring on Lupus or MS. Not dealing with the mycoplasmas also leaves one vulnerable to an autoimmune response, but an immune system in overdrive, like mine was when I went off the Doxy, is more dangerous. We are really treading new ground here, so I am excited to be part of the process. After going off the ABX, I had two Herx Effect. The first three days off the Doxy, I was very, very fatigued.

    I went back on the Doxy for two weeks at half the dose (100 mgs. instead of 200 mgs. a day). Today, I start two weeks of 100 mgs. every other day. I am very fatigued right now, but my kids were here for an extended visit, and they wore me out, not that I didn't enjoy all the running around.

    I was never told which strain(s) of mycoplasma infection I had back in early 1991 when the infection was active and the antibodies showed up in my blood. I actually got sick Dec. 24, 1990. At that time, no one knew how dangerous and tenacious these bacteria are and how difficult they are to get rid of. I only took a couple of cycles of antibiotics even though I remained sick for months after my initial infection.

    My doc and I decided it would not benefit me that much to know which mycoplasmas made me sick. Since the test is expensive and can often give false negative results, we decided to just try the ABX. The results were amazing. My IBS, chronic sore throat, swollen lymph nodes, and migraine-type headaches went away. So did the fluish feeling. My fatigue is not completely better and I still have some cognitive problems, but overall, they seem to be improving, just not as fast as I would like.

    I have been using the ImmunePlex whey and colostrum to try to help build up my immune system and try to get it balanced again. I do not want any straggler mycoplasmas to get another foothold on my system.

    BTW, the only time the light therapy can work is when the mycoplasmas are in the bloodstream fluids looking for new cells to invade. The ABX starve them out of the cells and keep them from reproducing. It's a very slow process because mycoplasma growth and replication is a very slow process. By the time we finally get to the ABX therapy, our bodies are filled with millions of these horrible critters.

    Good luck to you.

    Love, Mikie
  4. Jolie

    Jolie New Member


    Dear Mikie,

    thanks for your thorough response.

    I never heard about being on ABX too long and getting a rebound.

    HOw long have you been doing ABX?

    I am using Lederle brand Minocin because Prof. Nicholson and others say that it penetrates the tissues better.

    I must say, there's been a huge difference since I've been on it, even with my sleep.

    Thanks again,

    Love....Jolie
  5. Jolie

    Jolie New Member

    Dear Ajme,

    Thank you for your reply.

    I am familiar with the ROad Back FOundation, I began by using their protocol of Lederle Minocin 3x per week. My joint pain got a little better, but it occurred to me to e-mail Prof Nicholson and Dr. TEitelbaum about this lower form of dosing. If 3x per week at 100mg could do the job, why do 200 mg every day?

    Prof Nicholson said that the Brown protocol (Road Back FOundation) worked in the joints, where mycoplasma is slow growing. If you have mycoplasma in other parts of the body, it grows faster, so three times per week dosing is'nt going to work.

    Dr. Teitelbaum said that 3x per week dosing would just suppress the mycoplasma in CFIDS patients, not eradicate it.

    Since I've upped my dose to the Nicholson protocol my joint pain has gotten so much better, and I'm feeling better.

    Love,

    Jolie
  6. Jolie

    Jolie New Member


    Dear Mikie,

    I just printed out your response and read it, and realized that the rebound comes from weaning down, not from being on ABX too long.

    Thanks for the tip.

    Love,

    Jolie
  7. Mikie

    Mikie Moderator

    Actually, the rebound reaction comes from withdrawing the ABX abruptly and turning the immune system loose on its own to handle the mycoplasmas without help. I think it's a healthy sign that my immune system went into overdrive without the ABX because that means it well enough to do its work; however, if it does it's work too well, it can bring on an autoimmune response. This is what I'm trying to avoid, so I'm weaning off the Doxy to try to modulate my immune response. We have no idea whether this will work or not, but it's the only thing we could come up with. Dr. Nicolson told me to get off the ABX as soon as I could go two weeks without symptoms. I have great respect for him, but I don't think he has given enough thought to the protocol for going off the ABX. He is the one who discovered that an autoimmune reaction can bring on Lupus, MS, or other autoimmune illnesses. Sometimes, we just have to take things into our own hands, especially in uncharted waters like this. It's also very exciting to be part of the great experiment. I hope my experience can add to the collective knowledge about this treatment.

    Love, Mikie
  8. Jolie

    Jolie New Member


    Dear Mikie,

    Thanks for all your input.

    I will be ready to wean off of Minocin in about 41/2 months......at that point I may ask you more about your wean process.

    I did abruptly drop off Zithromax last year after having been on it for four months, but from what I can tell, no damage was done....but I will be much more careful next time, thanks to you.

    Love,

    jolie
  9. AJME

    AJME New Member

    I'm glad you are doing better on ABX. Hard to put a price on feeling good after years of feeling terrible.

    I agree with Nicholson that you should try very hard to wean yourself off the antibiotics after the protocol HOWEVER....

    Since your familiar with the road back foundation you will know that many people that have been on the Protocol for 3,4,5+ years with success! But they have not been able to go off ABX without the symptoms returning and having to go back on ABX to get the relief.

    I admire all people (like MIKIE) who seem to be trailblazing new approaches to getting off the ABX by incorporating supplements, prescriptions and lifestyle changes. Not just saying my symptoms come back, so I have to stay on the ABX indefinitely. If MIKIE and others (Nicholson, Cheney) can find a way to wean off ABX and maintain a healthy immune system we will finally have a effective treatment (accepted by most doctors) for FM sufferers that has an END GAME.

    I think Cheney Ideas on Balancing the Immune system could be the key. Getting the TH1 to be more active could establish a segway between the long-term ABX protocol and ending up with a healthy balanced (self sufficient) immune system.
  10. Jolie

    Jolie New Member

    Dear Ajme,

    Thank you for posting another informative reply.

    Prof. Nicholson also is now advising oxygen therapy in addition to ABX. The form of oxygen therapy my doctor is advising me to do is ozone. I'm planning to do it.

    Thanks also for the T1 T2 bablancing. I am following Dr. Cheney's protocol to the "T" with regard to this.

    I'm also hoping that doing human growth hormone shots once per week (also part of Dr. CHeney's protocol) will repair the damage done by the mycoplasma and I will be able to get off ABX.

    Will keep you all posted.

    Love,

    Jolie
  11. Mikie

    Mikie Moderator

    I use the growth hormone stimulant and it has helped too. I think every little thing we do helps. I am considering an ozonator on my air exchanger. In the meantime, I do Dr. Cheney's breathing exercises to increase oxygen in my system. I'm lucky in that I grew up in a high-altitude area, so my system is more efficient at using oxygen. Still, I do the breathing exercises.

    It may well be that some of us can never completely go off the ABX. I will likely go for a DNA test later on to see whether any of the wee beasties survived.

    Love, Mikie
  12. kerrymygirl

    kerrymygirl New Member

    Forgive me am having a bad day so I will try to recall this as best as I can,Not saying much you understand. My concern about long term antiotics,which I did alot on after they found out I had Lyme disease,plus fm epstein Barr etc. On this program it showed where bacteria almost could not wait for contact with antibiotics. It formed a whole new antibiotic resistant form which we have no idea how to treat. Thesre little buggers were in wait as if we were kids waiting to get our dessert. They got real busy recreating a form of bacteria that no one can touch. It was very lengthy in great detail why antibiotics are not working in illnesses like they used to. That is why a person gets sicker later and can not get well. It was scary. This is why I declined or hardly ever take antibiotics. Besides for killing off our natural flora and opening us up for a host of infections that are hard to treat. Everyone I knew on long term antibiotics went back to square 1 or got worse in the future. Many studies on people who used antibiotic`s for Lyme(stealth virus), it appears the jury is still out since there had not been a cure.I wish I could remember all the details but they showed exactly what happens with long term antibiotics even though people recoop for awhile. So I had declined till I had more proof. Did I say something about memory????
  13. Plantscaper

    Plantscaper New Member

    THAT IS WHAT I HAVE HEARD NUMEROUS TIMES ABOUT WHAT WILL HAPPEN WITH THE OVERUSE OF SUCH..IT'S TOO BAD WE DON'T KNOW AT THIS TIME ABOUT A GOOD, AND SAFER ALTERNATIVE..I WAS HOPING THAT IT MIGHT BE OLIVE LEAF EXTRACT...HOW MANY PEOPLE OUT THERE FEEL THAT IT MAY BE THE SOLUTION?
  14. Sindy-Uk

    Sindy-Uk New Member

    My doctor uses Dr Cheny's protocol mostly. I have high Rnasel activity and Mycoplasma Fermentans infection. I am going on the Imunovir to correct the Rnasel. For the Mycoplasma, he has advised me to have Dioxychlor/Sulfoxime infusions. He says in his experience they may work better then antibiotics. I will need 4 IV infusions lasting two and half hours each. I believe, it is supposed to release oxygen in the blood, which hopefully should kill these things. I will start this treatment in about 3 weeks. Until then I need to see if I have any side effects with Imunovir. I really do hope it works, otherwise I will have to consider taking long term antibiotics.
    Take care
    Love
    Satin
  15. nickname

    nickname New Member

    Dear Satin

    How have you done on imunovir and the dioxychlor/sulfoxime infusions? My consultant here in London has suggested both of these as a treatment protocol to me, although I am awaiting test results for mycoplasma to come back yet from one of the labs in the States. Details please.
  16. Mikie

    Mikie Moderator

    It stated that breeding resistant strains of bacteria does not seem to be a problem even for people who have been on the antibiotics for years. This is good news.

    Using good probiotics is the key to being able to tolerate antibiotics without crippling the gut. Mine is actually healthier on the Doxy as it relieves my IBS.

    Love, Mikie