Mycoplasma Infection

Discussion in 'Fibromyalgia Main Forum' started by vivian53, Jun 4, 2009.

  1. vivian53

    vivian53 Member

    I tested positive for this in 1994. I have done only cursory research on it. I have symptoms of FM with some fatigue but not enough for this to be my primary diagnosis.

    I took a one year course of antibiotics, to no avail.

    If you have tested positive for this bacteria, what are your circumstances of contracting it and what course of treatment have you taken?

    Any info is greatly appreciated

  2. frickly

    frickly New Member

    I tested positive for M. Pneumoniae, one of four mycoplasmas that are said to be commonly found in CFS and gulf war illness, and have been on antibiotics for three months. I don't know how long I have had it or how I got it as no other doctor bothered to test for this in the past. My doctor beleives that mycoplasmal infections can cause alot of pain with symptoms simular to multiple sclerosis and rheumatoid arthritis. I thought for along time that I probably had one of these diseases because I had all the symptoms. After being on antibiotics for a few weeks and having a severe herx reaction, about 80% of my pain went away.
    [This Message was Edited on 06/04/2009]
  3. Mikie

    Mikie Moderator

    I was never told the strain but I lived next to a military facility where soldiers were being vaccinated prior to the first Gulf War. I got sick on Dec. 24, 1990. Best guess is that I picked it up from a sick soldier out in the holiday shopping crowds. My doc didn't know that only one or two courses of ABX weren't sufficient to drive it into latency. I was crippled for months following what felt like the worst flu I had ever had. There was so much pain in my legs. Eventually, I recouperated, sort of, but I have never been the same.

    If you want to know more about mycoplasmas, go to Dr. Garth Nicolson's website,

    Ten years after my infection, I started a 2 1/2 year course of Doxycycline, pulsing off and on eventually until I could stay off. I still keep the Doxy around because mycoplasmas, like Lyme, can deposit cysts deep inside body tissue and it can reativate if one gets run down or suffers a trauma or stress.

    Good luck to you.

    Love, Mikie
  4. vivian53

    vivian53 Member

    I believe Dr Nicolson is the person who led me to ask my doctor to test me for this bacteria 16 years ago. I will check his website. I wouldn't have known if I was herxing or not I don't think. I was bedridden for the first two years.

    I am better now, about 65%. I didn't feel any different on the Doxy to my knowledge. I was really in a bad way and cried every day so I am not sure. I am not well enough to work but able to do stuff around the house, help my mother and even do volunteer work.

    I would like to feel 100% better. Do either of you think having this bacteria has done any permanent damage? What are your troubling symptoms?

    Mickie are you saying you take Doxy when you start feeling badly?

    bigs hugs to both of you for answering me . It has helped.

  5. Mikie

    Mikie Moderator

    I don't take the Doxy just when I'm feeling bad but if I feel that the symptoms of mycoplasma infection might be reactivating, I do as a preventive. My doc is OK with it and I always have some on hand. Same thing with Acyclovir. There is a slight difference in how the symptoms manifest and I can usually tell which one may be trying to come back.

    I've been through a very comprehensive treatment regimen and the ABX and AV were only part of it. I am not well but I have gone from bedridden most of the time to being able to work part time as a cashier at a grocery store. It's still a game of balancing my energy all the time.

    I don't know whether I have had permanent damage because I continue to heal. Thing is that the healing is so slow that I have to look back nine years to when I was bedridden to see just how far I have come. There are days when I feel pretty well and am sharp and there are days when memory isn't good nor is concentration.

    I probably have been sick all my life but it wasn't until the mycoplasma infection, that my illnesses were triggered full blown. As I mentioned, I did recover some from the infection but was never the same. I kept going downhill but was in denial and kept working. It was after an auto accident that the FMS pain and fatigue cause me to have to quit and go to bed. So, it was 1990 when I got sick with mycoplasmas and 2000 when I could no longer work. I came here and started to learn all I could about CFIDS/ME and FMS. I researched as much as my health would permit. I was lucky enough to have good docs who accepted the research papers I printed out for them and prescribe the meds I needed. Eventually, I found a specialist who worked with me to see just how much healing is possible. So far, I have healed more than any of his other patients. I hope my experience has helped others.

    Love, Mikie
  6. chrissy12

    chrissy12 New Member

    I don't think I can be much help. I was diagnosed with mycoplasma pneumonia 3 years ago. I have been on doxy since. I even went 6 weeks for antibiotic IV therapy. I am feeling somewhat better, but my titers are still very very high. The doctor tells me not to worry, they will eventually go down.

    I am still wondering what will make them go down... Sorry, I couldn't help much.
  7. frickly

    frickly New Member

    I have been on antibiotics for three months but the bacteria is still present in my blood tests. I also worry that the antibiotic will not be able to rid my body of these nasty bacteria, only time will tell. I don't beleive that it has done permenant damage but what do I know? I used to be a "glass half empty" kind of girl but my improvement in health has turned me into "a glass half full" personality. I beleive I will get better but also know this is not going to magicly happen. I have spent hours researching and stick to my protocol. I have become my own physician and I beleive it's working.

    Attention men! You may want to skip this part. I have been on supplements for several weeks now. I went to my gynocologist a while back telling him about my menstral issues that were becoming very bothersome and had been that way for about a year. He told me that it would only get worse and I would have to have surgery. Well, I did not have surgery and my menstral cycle has been totally normal for the past two months! I know it is the supplements and my body getting back into balance. Sorry if this is TMI but I beleive it is a good sign and another reason to stay on this track.

  8. Mikie

    Mikie Moderator

    According to Dr. Nicolson, it takes at least six months of treatment on ABX before one can even try to pulse off of them for two weeks without the symptom's returning. If one cannot stay off for two weeks, one goes back on for six weeks and then tries again. The time off the ABX will eventually be longer and longer until one can stay off of them. Are you Herxing?

    Love, Mikie
  9. frickly

    frickly New Member

    I am no longer herxing. I think I have made it over that hurdle. I started with doxycycline which caused me to be in tremendous pain and vomiting. I switched to azithromycin and stopped vomiting but went through about three weeks of my symptoms being very severe. My doctor told me I would need to be on them for at least four months but I can see that it will take longer for me. I had never heard of a herx reaction but learned about it on a support site. I am glad I figured out what was going on or I really would have thought I was dying. It was pretty bad.

  10. vivian53

    vivian53 Member

    Frickly it sure helps to maintain a positive attitude and with what you've described your going through, wow.

    Rainbow I didn't know you had this infection. I hope you wouldn't mind telling me exactly what your doing.

    It sounds like all of you have become your own doctors. I don't know enough to do this. I don't think my current doctor has a clue either.

    What could you all recommend as my next step?

  11. frickly

    frickly New Member

    Considering that you have had a mycoplasmal infection in the past it might be worth testing for again. There are only specific antibiotics that have been found to work against these bacteria. I wonder if you were on the right kind. I think testing is important because each of us have different issues. Mine were M. Pneumoniae and depleted glutithione. Someone else might have yeast or thyroid issues. If you don't have insurance or can't find a doctor (took me seven years to find one) then I would start on supplements to support your immune system. I take many supplements and know it is helping me tremendously.

    Take care,
  12. vivian53

    vivian53 Member

    Yeah I tested positive in the mid 9o's. As far as I understood I tested positive for the antibodies. My doc said that meant the infection had come and gone. He treated me with Doxy for one year. There was no post test, I thought since it wouldn't reveal anything new.

    I am thinking now that you are right. I should be retested. I will have to convince my new doctor and I have an appt next week. He is very nice, I hope he is at least receptive.

    Thank you

  13. Mikie

    Mikie Moderator

    After one has been chronically infected for a long period of time, the only half-way reliable test is a PCR DNA test. Even with that, it can return a false negative result.

    Mycoplasmas, like Lyme, never really goes away. They can reactivate when one becomes sick or run down. I also believe it is important to build up one's immune system. I take the undenatured whey, colostrum, and probiotics to try to stay healthier.

    Good luck.

    Love, Mikie
  14. frickly

    frickly New Member

    This might be a good web page to print off and bring to your doctor when you ask for a test for mycoplasmal infection.

    The following is a good web page about Dr. Nicolson's research into mycoplasmal infections. These bacteria have been found to embed themselves in the tissue, including the brain and spinal cord. Because of this it can be difficult to test for. One problem that could occur when seeing a mainstream doctor with little knowledge of these bacteria is that it could show up as a resent infection that is no longer active. This doctor would then say you do not have an infection. Someone that understands this bacteria would know that, often, they are not found in the blood, but in the tissue and would treat you for an infection.

    "Unlike bacteria, the Mycoplasma has no cell wall. This enables it to invade tissue cells, incorporating the cell's nutrients, and using the cell to replicate itself (much like a retrovirus). (13) When the Mycoplasma breaks out of the cell, it takes a piece of the host cell membrane with it. When the immune system attacks the Mycoplasma, it also gets "turned on" to attacking the host cell. In this way, an autoimmune condition can begin. Autoimmune conditions associated with Mycoplasmas include arthritis, fibromyalgia, myositis, thyroid dysfunction (Hashimoto's or Grave's Diseases), and adrenal dysfunction, signs and symptoms of Lupus, Multiple Sclerosis, Lou Gehrig's Disease. (12) "

    "The Mycoplasma organism has the capacity to invade cells, tissues and blood, producing systemic infections in numerous organ systems. According to Dr. Nicholson, it can penetrate the central and peripheral nervous system. Because it has the ability to damage the immune system by invading the natural killer cells (NK cells) of the lymphocytes, it weakens them, reduces their numbers, and renders them susceptible to viral infections, such as Human Herpes Virus 6 (HHV6). (14) (15) (16) It may also explain some of the environmentally sensitive responses that are seen with CFIDS and MCS. "

    "Mycoplasma infection can trigger inflammatory cytokine over-production that is commonly seen in CFS/FMS. With the induction of CD-4+ helper cells of the immune system, an over production of cytokines such as Interleukin-1, Interleukin-6 and Tumor Necrosis Factor-alpha occurs. (15)(16)(17) These elevated cytokines have been implicated in the development of many of the CFS/FMS symptoms, including neurological involvement. (19)(20) They can have specific or nonspecific stimulatory or suppressive effects on lymphocytes, as measured by B and T cell activation. (18) In addition, the Mycoplasma infection has immunomodulating effects, activating the hypothalmic-pituitary-adrenal axis. This can cause a cascade of limbic system symptoms characteristic of CFS/FMS. (19) "

    "The Mycoplasma is a slow-growing, stealth-type organism that can cause the patient to be very ill. It activates the immune system, then can successfully hide from it within the host immune cells. It can then circulate throughout the body and go wherever a white blood cell can go. It can cause infection deep within any or all organs. It can even cross the blood/brain barrier and cause brain and spinal infection. It has also been known to cross the placental barrier to an unborn fetus. Unless the white blood cell is split open and examined for the evidence of the live organism, it can go undetected for years. Because the organism resides deep within the cells, conventional antibody tests may be relatively useless. (21) The splitting open (fraction) of leukocytes (white blood cells) from a fresh blood sample, with a forensic PCR test is the most accurate way to detect the presence of active infection with a live pathogen. Further gene-tracking techniques perfected by the Nicolson's are even more accurate. (22) "
  15. vivian53

    vivian53 Member

    Mikie thanks for the info. I only take the GSE. I will check into doing more for my immune system.

    Frickly thank you so much for posting this, for your time and thoughtfulness.

    This is great info and I will print it out and take it to my appt tomorrow.
  16. Mikie

    Mikie Moderator

    He felt that the autoimmune danger was one of the worst dangers about chronic mycoplasma infections. I had been infected for 11 years when I began my ABX treatment. We knew it would take a long time before the infection was under control. It did take 2 1/2 years, pulsing after an initial period of being on the Doxy every day.

    I printed out articles and papers from Dr. Nicolson, and others, to present to my docs. That is important because docs seem to respect other docs and researchers who publish. Just be sure the authors are respected in their field. I told my doc that, at that time, Dr. Nicolson was the leading researcher in mycoplasma infections.

    Treatment didn't stop for me with ABX. We found out by sheer luck that I was also suffering from some kind, or kinds, of chronic viral infection(s). I had to take Famvir as a preventive prior to facial surgery. I went into a temporary, but complete, remission of symptoms. Soooo, I began another treatment regimen with the Famvir and it lasted 1 1/2 years. It was after that that I started with the transfer factors. They are about the only way to get HHV-6 under control. I also started Heparin injections. With each treatment, I Herxed, or had Herx-like reactions. Now, it's just a metter of keeping stray infections swept up and my immune system in as good a condition as I can.

    I do not think it possible for us to achieve measurable healing unless the chronic infections are addressed. Even then, healing is slow. Best of luck to you.

    Love, Mikie
  17. vivian53

    vivian53 Member

    I saw my Rheumy today and talked to him about the Mycoplasma infection. He said I was the only patient he had ever treated that had this. He wasn't, of course, familiar with Dr Nicolsons work.

    He told me "I can tell you what has caused your FM and CFS, it's your neck problems." I told him when I came down with this DD I had no neck problem. He thought the people that got better on this protocol would have either gotten better with time anyway, or it was the placebo effect.

    He said that the germ warfare aspect of the whole thing didn't make sense biologically because if it is slow growing then it wouldn't be an effective agent, and that the more it was altered the weaker it would become.

    He said that other studies did not back this research up. He questioned my wanting to try Doxy again after taking it for a whole year with no results.

    But then he talked about cows getting Tetracycline to lower stress (?) and make them eat more because they felt better. And Jam, he said that Doxy helps OA and RA. He said he was familiar with autoimmune disorders and that some people get better on antibiotics.

    So then he said that without any further testing he WOULD be willing to give me the Doxy for a year. Even though he related that he had never seen anyone with FM get better on this type of treatment. He also said that he'd never seen anyone herx on Doxy, only Penicillin.

    I was so happy to get it that I didn't ask any more questions like what he would recommend to get my immune system in shape etc. So I will follow what Dr. Nicolson recommends and what people here are doing.

    I do like him and think it was open minded of him to give me the treatment even though he didn't believe in it's efficacy.

    I guess I will soon find out what this herxing fun is all about.

    best wishes for all of you here

  18. hatbox121

    hatbox121 New Member

    How did ya'll come about getting tested for this? Did the drs do it or did you have to bring it up? Is it just a simple blood test?
  19. frickly

    frickly New Member

    This is deeply troubling to me. This doctor dosn't even think it is worth a test but is treating you for something that he dosn't even beleive you have. This doctor does not beleive FM or CFS exists. I strongly recommend that you find another doctor. If you do still have this bacteria the herx reaction could be so severe that you may need to stop or change antibiotics. This doctor, clearly, does not know enough about this bacteria to treat you and should have referred you to someone who does. Let us know how you do on the antibiotic but please find another doctor.

    Take care,
  20. Mikie

    Mikie Moderator

    of mycoplasmas are suspected of being engineered. They do occur naturally in nature. Thing is that if one does some research, one will find that many researchers believe the weaponized strain could not have occured naturally. Also, that strain is pattented by a doc with ties to the DOD. I have seen a copy of the patent. This may be interesting in terms of conspiracy theory but it doesn't change the need to treat any strain of the infection which goes chronic within the body.

    As with many chronic infections, mycoplasmas may operate below the immune system's radar. A blood test may turn up some antibodies but if the immune system is no longer producing antibodies, the count will be low and a doc, who doesn't understand what he's dealing with, may assume one was just exposed to the germ and recovered. Same with EBV. Almost all the population will show exposure through antibodies but for some, the EBV will operate in stealth mode and keep a person sick.

    Herxing can occur when anything causes large dieoff of bacteria. It is very individualized, depending on how long one has been sick and how badly infected one is. I Herxed the third day I started the Doxy. I Herxed hard but fast. I can now recognize a Herx almost right away. My lymph nodes will swell, I get a headache, I sweat profusely, and I have severe diarrhea. Over the length of the treatment on Doxy, my Herxing became less and less severe as more and more of the pathogens were cleared from my bloodstream.

    The term, Herxheimer Effect, officially relates only to bacteria but anything which causes large pathogen dieoff can cause Herx-like reactions. Some of the worst reactions I have had were to the transfer factors and Heparin injections.

    When I started all this treatment, more or less one thing at a time, it was cutting-edge and my docs and I proceeded empirically. My HMO would never cover expensive testing for an infection which many docs don't believe can go stealth and chronic in the body. I still don't believe we can heal unless we address the underlying infections.

    My own healing has been slow but I will always be grateful for my docs who were willing to stick their necks out to try these treatments. I always say that I'm not well--yet. I continue to improve but I have to look back many years in order to be able to see just how far I've come. At the end of 2000, I was bedridden most of the time and on Morphine for my FMS pain. I believe it was the Guai Protocol which allowed me to get the FMS symptoms under control so we could concentrate on the CFIDS/ME. I am now able to work part time but I still have to be very careful of my energy. I also have to be alert to any symptoms which may signal a reactivation of any pathogen.

    Good luck with the Doxy. Good luck also to everyone who is trying to address chronic infections.

    Love, Mikie