Mycoplasma Infections Never Go Away

Discussion in 'Fibromyalgia Main Forum' started by Mikie, May 21, 2006.

  1. Mikie

    Mikie Moderator

    As y'all know, I suspected that my mycoplasma infection had reactivated following the stomach flu. I wrote to Dr. Nicolson and he replied that cysts deep inside the body can remain latent and then reactivate in cell-wall-deficient bacterial infections. I started a ten-day course of my Doxycycline and am now Herxing big time. It's been almost 48 hours of a horrible headache and diarrhea from hell. This is good news because it means that a lot of bacteria died off.

    I think that, like people with Lyme Disease, those of us with mycoplasma infections can never assume they are gone. I feel as though I will have to be vigilant the rest of my life. We already know that Herpes-Family Viruses can reactivate when we get run down. I have to keep Doxycycline and an antiviral med on hand all the time just in case.

    I post this because I have been treating these chronic infections longer than most here and just wanted to make sure everyone else knows to be very careful not to let a chronic infection reactivate and cause a severe relapse. I'm lucky in that I have the tools, and now the experience, to know what to do. I'm also lucky in that I found out about Dr. Nicolson and his work and that I have good docs who are willing to work with me. I hope this helps others who are fighting chronic infections. It isn't easy, but I am convinced that we cannot let these infections take over our bodies.

    Love, Mikie
  2. kriskwon

    kriskwon New Member

    I was diagnosed with "walking pneumonia" about a month ago and someone told me that it was considered a Mycoplasma Infection. Is it and now what? I have lost track how many times I have broken out with shingles (I have them right now), but well over 35x.

    My Infectious Disease Specialst tells me that I most likely have a virus that runs up and down my spinal cord (fluid) and that with a high dose therapy of Valtex, it shoud finally burn out on it's own. Still waiting...

    Just from reading all your posts, I think you know more than my doctor does about all this (whether by choice of not :<)

    I have no doubt that this is the cause of my havig FMS. I'm just soooo confused by the whole thing!!!
  3. browneyelady48

    browneyelady48 New Member

    Sorry to hear about your relapse, you are so much advanced than anyone here and most Dr.

    I wish I knew what and all was going on in this old body of mine.

    Has the red tide left from down there. I am wanting to go to the beach here so bad. Maybe soon.

    Have a blessed day
  4. bpmwriter

    bpmwriter New Member

    i shall quote you, "caution and pulsing for life."

    i'm making that my new mantra :)

  5. Mikie

    Mikie Moderator

    PJMonster, thanks for your good wishes. Yes, Lyme is infamous for reactivating. The best thing we can do is to keep our immune systems healthy but we are not immune from the viruses going around. Also, I had some dental work about the time I was recouperating from the stomach thing. I will never get dental work done again without taking the Doxy first.

    Stormy, I also hope the natural route works for you. I do pulse the TF's to keep the viruses under control and it seems to work. I figure I'll probably have to do that for a loooooong time. I try to keep off the Doxy and only take it when I need it. It has been so very effective for me at starving out the mycoplasmas that I depend on it when there is a reactivation like this.

    Kris, I am so sorry about all the outbreaks of shingles. I sure hope the Valtrex helps. AV's can be given by IV in dire situations. I appreciate your kind compliment, but I only know what I've had to research for my own treatment. I also do not think these infections cause our illnesses but they can surely trigger them and they can reactivate and leave us open to other infections of opportunity. There are several types of bacteria which can cause pneumonia. If it was mycoplasma pnumonia, it may require six straight months on ABX to be sure the mycoplasmas are under control. Even then, one must usually pulse them, six weeks on and two weeks off until one can go longer and longer off the med. MP doesn't appear to be the most virulent strain of mycoplasmas, but with our defective immune systems, we have to err on the side of safety. Good luck and let us know whether the Valtrex is working. I gave some of the ProHealth ImmunPlex undenatured whey to my neighbor for her shingles and they cleared up in record time.

    Hi, Brenda, thank you for your kind words. Whatever I have learned has been by necessity. I've been wrong sometimes, but I've remained flexible and continue to learn. I once pooh poohed the notion that EBV would cause cancer but no more. Research is showing that it likely can. The Red Tide is still with us. They showed it on TV where the tide had brought it in. I don't know why they don't clean it up as it is bad for tourism. They do when it kills fish and the beach stench is so bad. Perhaps it is like asbestos and disturbing it just makes matters worse. Between the Herxing and the Red Tide, I'm not in the best of shape. This too shall pass.

    Thank you all for your interest. Wishing you all healing.

    Love, Mikie
  6. kriskwon

    kriskwon New Member

    for the reply. I'm gonna go ahead and try the whey.
  7. browneyelady48

    browneyelady48 New Member

    Mickie, Do you think the red tide could be making you worse right now.

    I think I mention to you last Sept. we toke the travel trailer to the beach for a couple of weeks and the red tide was awful, and I didnt know what the problem was until it was to late.

    My respirtary problems got even worse. I did a sleep study and my oxygen level was low at night and was put on oxygen, and I just cant seem to overcome it.

    I havent heard of any red tide up here, but I am sure it will make its way here.

    I will say a little pray for you. I just looked at your profile to see if you had updated a pic of the precious little one, and oh he is too cute.

    Love Brenda
  8. TXFMmom

    TXFMmom New Member

    I had mycoplasmic pneumonia years ago, and only recently read something which suggested it can lurk in your body the way a chicken pox infection can, only to pop out as shingles, years later.

  9. intensemom

    intensemom New Member

    I am so sorry you too.

    I was on Doxy 200 mg. twice per day for 4 weeks due to C. pneumoniae and had to stop due to stomach issues.

    While I was herxing I had sleep problems even with meds. Then around the 3rd week or so I started sleeping like a log. Now it's been 2 weeks off of it and I am having trouble getting to a deep sleep. This is so disappointing because I was just becoming well rested!!

    Anyway, a question...what dosage of Doxy are you on? And when you resume doxy after a break of 2 you go through a bad herx again? I mean, is it like starting over? Also, I have been reading about the Marshall Protocol and wonder what your opinion on it is?

    Thanks so much and good luck!

  10. ANNXYZ

    ANNXYZ New Member

    you have to wonder why SOME folks get these very infections and are NOT bothered by them for a lifetime ,
    unlike those of us with CFIDS .

    I speculate we do have an immune system abnormality that prevents us from wiping out infections . This is being postulated with studies of VALCYTE ( new AV drug ) .

    I hope the great responses that cfids patients had to valcyte will shed some light on this issue .

    another wierd thing , I have lyme and always feel fluish .
    However, I rarely go to the doctor for any other kind of infection . I rarely get the bugs that go around seasonally that make normal people sick .
  11. kriskwon

    kriskwon New Member

    Sorry if this is a dumb questions, but is that (Mycoplasmic Pneumonia) the same thing as walking pneumonia? I had it only 2 months ago, but I remember that I also had walking pneumonia in my twenties.

    I'm deperate to find out why I am getting shingles so many times. It's seems like all the doctors ever do is give me Valtrex and keep me heavily sedated. I hate it. It's bad enough having FM.

    It seems like as soon as I get the FM under somewhat control and lower my pain meds, start walking etc., I get thrown off base with shingles. Then I have to start all over again. Ooops, sorry for the whinning...
  12. Mikie

    Mikie Moderator

    Brenda, yes I do remember your horrible experience with the Red Tide before. It's funny because it doesn't affect everyone but it does affect a lot of people, healthy as well as those with chronic illness. I cannot seem to get to feeling better and according to the TV news, the stuff is still lying on the beach. Sudafed does help with it so I am going to keep taking that. I am still running a slight fever today and if it's still there tomorrow, I'm going back on the Doxy. I think when one thing gets us down, we are really vulnerable to infections of opportunity or chronic infections which can reactivate. I hope you do not get the Red Tide; it's horrible. Thanks for the prayer and you sweet comments on Andy. He is just like this all the time, smiling and good natured. He's now using the dog door, so my daughter has to keep a close eye on him.

    TXfmmom, you are right. That's exactly what Dr. Nicolson said about the cell-wall-deficient bacteria. Those with Lyme know how hard it is to get rid of.

    Tracy, did you take a good probiotic? After 2 1/2 years on the Doxycycline, I never once had stomach problems except when I was Herxing. I took 100 mgs. of the Doxy twice a day and it was about six months before I could stay off of it for the two weeks between the six week pulses. Now, the protocol has changed to not pulsing for the first six months but rather to take the Doxy straight through. After six months, one tries to pulse off for two weeks. My doc told me not to wait the full two weeks if the symptoms returned. Eventually, I was able to go longer and longer without the Doxy. Dr. Nicolson told me to get off the Doxy as soon as I could withoout the symptoms' returning. Now, I only take the Doxy when I feel the symptoms return and I am running a fever. The fever is always low grade but it does signal that I need to start the Doxy for ten days. Yes, when I would stop the Doxy, I would Herx. I am just finishing up a Herx from this round of the Doxy. Herxing is another good sign to go by. If you take the Doxy and stop it and there is no Herx, it is a good sign that it has been driven to latency. I am so sorry you are sick. You may just need to continue the Doxy longer. Thanks for your good wishes and good luck to you too.

    Ann, it is not unusual for us to suffer greatly from one infection but never get sick otherwise. Our immune systems have two sides. With us, one side is deficient and the other side can work overtime. Also, something can trigger our immune systems and they can go permanently into overdrive. This can lead to an autoimmune illness. As I've been able to better balance my own immune system, I do notice I get more viruses going around. As much as I hate that, it is an indication that things are normalizing for me. Now that they have identified the defective genes in PWC, the answer as to why we have such immune problems will likely come to light. I hope and pray this leads to cures or, at least, better treatments.

    Kris, I think the term, walking pneumonia, is more a medical descriptive term than one which refers to the pathogen involved. If I were you, I would get the medical records to find out what kind of pneumonia you had. If it was mycoplasma pneumonia, you might want to go to Dr. Nicolson's website and read about the treatment protocol. The paltry rounds of ABX given by most docs for mycoplasma infections are insuffient to get the infection under control, especially in those with faulty immune systems.

    Praying for all of us that we can achieve healing.

    Love, Mikie
  13. Mikie

    Mikie Moderator

    Who responded and haven't seen my response.

    Love, Mikie
  14. browneyelady48

    browneyelady48 New Member

    Mikie, You gave me a chuckle for the day with Andy using the dogie door. I have never heard or thought about that as a problem.

    That is to cute to visualize. I have 6 GRANDchildren and they are my life.

    I remember your daughter had a miscarriage the same time my daughter in law had a miscarriage, and then your daughter give birth about the same time my daughter in Kansas had a baby.

    I am missing my little one in Kansas so bad. But I have been very fourtant to be able to see her as much as I do.

    I pray that your day and everyone here is having a bless day.

    Love Brenda

    Mikie, Since I havent been reading the board for awhile, how is Shirl??? I think of her often and I know everyone miss her, but then again she may be still here, I just started back to the board.[This Message was Edited on 05/22/2006]
  15. Mikie

    Mikie Moderator

    Shirl has had a rough time of it trying to recover from the hurricane stress and a long bout with bronchitis. It's kind of like when we just can't seem to feel better because we just take care of one thing and then it's something else. I know she can use our prayers. I call her from time to time, but she is seldom online anymore. She doesn't have much energy right now. Thanks for asking about her.

    I'm glad you enjoy your grandchildren so much. I am lucky to see Andy as much as I do. I keep toying with the idea of moving up to GA to get a little closer and to get out of hurricane alley. This was a wonderful place to live and still is but between the increasing outbreaks of Red Tide, worse hurricane seasons, and the unbelieveable growth and density, it has lost a lot of its attraction for me.

    Love, Mikie
  16. TXFMmom

    TXFMmom New Member

    Yes, it is the same thing. Mycoplasma pneumoniae.

    At the time, they said walking pneumonia.

    Well, if that is walking, I don't want to have any other kind.

    I had it in both lungs, after nursing my son, who developed it from his day care, no doubt.

    As a nurse, his pediatrician thought I should care for him at home, which was hunky, but after seven days of day and night and no rest, I finally had to force him to hospitalize the child for rehydration. A strong willed child simply cannot be forced to drink.

    He went nuts on me, said an Advanced Nurse Practitioner and a CRNA should be able to do better, yada, yada, yada.


    After a day and a half on IV's and rehydration, along with the IV antibiotics to supplement the PO ones, the child was pretty darned good.


    I ran 103 even with Tylenoll and Ibuprofen, and was desperately ill for ten days, and had the hacking, horrible cough for another five weeks. EVERY THORACIC GUY IN THE PLACE WAS ITCHING TO BRONCH ME. I KEPT TELLING THEM NO WAY, but then something would set of the hacking cough and it would take me ten minutes to quit.

    I ended up on antibiotics for ten days, and had to have IV's once. I had hubby just take me to the hospital and other CRNA's started the IV and gave me the IV's and some vitamins and it did help bring down the fever and made me feel a little better.

  17. ANNXYZ

    ANNXYZ New Member

    Do you feel fluish 24/7 like I do ? My flu feeling never goes away .
  18. Mikie

    Mikie Moderator

    Before I got the chronic infections under control, yes, I did. Some days were worse than others. Now, the only time I feel that way is when something is trying to reactivate. My own immune system will often take care of it on its own if I rest, but sometimes, I have to pulse the ABX and/or the AV's. That's the worst, when the mycoplasmas reactivate and open the door for whatever Herpes-Family Virus(es) I have.

    Chronic stealth infections fly just under the immune system's radar. They are bad enough to make us feel fluish all the time but our immune systems do not recognize them as a threat. That's where I think the TF's are so good. They actually train the immune system to recognize pathogens. They can make one feel sicker for a while because when the immune system starts to recognize the body is full of pathogens, it produces a big immune response. That, however, can be controlled by adjusting the dose of the TF's.

    Hope this helps.

    Love, Mikie
  19. kbak

    kbak Member

    Very sorry you've had a relapse.

    I do not believe that these little beasties are natural quirks of nature. It was either Dr. Nicholson or Dr. Martin that at one time said that these stealth viruses were missing the marker that identified them to our immune system as invaders.

    That speaks to me that maybe these are bio weapons. If that is the case, then I imagine we are forever fighting to keep them at bay.

    If anyone thinks that's to wild, then I suggest reading Lab 257. You can buy it from Amazon pretty cheap. It is a very well documented book on the history of Plum Island, the gov. bioweapon research facility off the east coast.

    The book explains how poorly secured these viruses were, and how the animals and birds that lived on the island could have easily been the vector for spreading these viruses to the main land.

    Hope you feel better very soon!

  20. ldbgcoleman

    ldbgcoleman New Member

    yes this is a fight for the rest of our lives. I appreciate every day I feel good and am trying to make the most of it and not live in fear of relapse. if it happens it happens.

    It is very frustrating that more Drs don't know and understand about these things. It seems almost criminal. I too am fighting the mycoplasma. doxy did not help at all so I am trying Zithromax. I feel pretty good almost every day. Not perfect but I can live with it.

    Please keep the info coming! Thanks Lynn

    The welcome mat is out here in GA!