Do some pathogens cause/trigger CFS/FM?

Discussion in 'Fibromyalgia Main Forum' started by sujay, Sep 13, 2003.

  1. sujay

    sujay New Member

    I'm convinced they do, and that some people are more susceptible to hypercoagulation triggered by the immune system as it tries to rid the body of these organisms. This sets us up for auto-immune disease.

    LOTS of different pathogens seem to be involved, including Epstein-Barr (which also causes mononucleosis), CMV, HHV-6, parvovirus, Lyme disease, Rickettsia (Or Rocky-Mountain Spotted Fever), Borrelia, Chlamyia and Mycoplasma. It can be difficult to tell which organism (or organisms) might be involved, especially if hypercoagulation is not being addressed, as these organisms are all intracellular parasites, which means they are not free-floating in our bodies, but hide inside our cells and basically hijack the systems that are supposed to provide energy for US.

    These are considered opportunistic organisms, as they do not seem to cause much of a problem in patients with healthy immune systems. Most people are able to shrug them off without much trouble (except for diseases likke Lyme, which are experts in disguise). That's one of the main reasons doctors don't pay much attention to them and dismiss them as a cause of serious disease.

    However, I am absolutely convinced that some of us are at a disadvantage genetically, as our systems seem to conspire with these pathogens to increase coagulation beyond our bodies ability to clear it from our systems, thereby creating conditions that make it EASIER for them to hide out in our cells (how's that for stealth?) and generally conspire to make us feel miserable.

    Just about every time I am able to do the ISAC Panel on patients who have CFS or FM with significant fatigue I can identify abnormalities that support this theory. In patients who have been sick for a long time (for years, usually more than 10) the tests sometimes get more abnormal before they begin to improve, because the coagulation process has done such a good job protecting the immune system from the pathogens. That's why we have to be prepared to feel worse before we get better. It's when the immune system is actively doing it's job that it produces the most chemicals that cause fever, inflammation, and that sick feeling that we all abhor.

    I don't want us to get too hung up on which pathogen. It helps to identify the ones that might be making you sick because it will help your doctor figure out how best to tackle them (assuming you're lucky enough to have a doctor who thinks they need to be dealt with and is willing to help you find the best way to fight them off). However, we're not always able to identify a particular pathogen. Perhaps it's just doing a really good job of hiding out, or we haven't had enough clinical clues to order the right test.

    I think that hypercoagulation is part of the problem for everyone, but it is only PART of the problem. However, I think it is a sort of final common pathway, which is why we all had lot's of different triggers (which all probably knocked out our immune systems to a certain extent, and we all have different sets of symptoms when we first became ill (or when we "flare"). When we have been sick long enough (unless we're lucky enough to find a successful intervention early in our illness) we all start to look pretty much the same.

    This is my first post to start a new thread, and it's so long that many of you may hope it's my last, but I thought I needed to clarify these issues so that we don't get confused by too many details and lose the forest in the pine needles. Once again I'll put in a plug for finding a conscientious physician to work with you in your quest. Those of you who've seen my other posts know I'm always happy to answer questions. Just make sure my name is somewhere in your post and I'll do the best I can to help.

    Good luck to all of you. I've learned a lot in the 2 (no 3!) years since I became ill, and a lot of it I learned from my own patients and from people like you. Allow me to express my gratitude to you all. Thank you for sharing, and caring.

  2. Mikie

    Mikie Moderator

    If you have read any of my posts, you know I concur with you 100 percent. I have been lucky to have a doc who is willing to try things empirically and I believe that is why I am slowly getting better. I don't really care which strain(s) of mycoplasma infection I have or which strain(s) of Herpes-family virus(es) reactivated in my body. It is enough for me to be on antibiotic and antiviral meds to help clean them up.

    I do believe it is genetics which allow us to become sick with pathogens and I believe these crafty little buggers do manipulate our bodies to make them more hospitable for them to thrive. I am hoping the bromelain is going to make it easier to rid my body of them.

    All of this is pretty new stuff and very exciting to be a part of. I am hoping from all of this will come some kind of protocol for treating patients with CFIDS and FMS. My new specialist is watching to see what is developing from my efforts and is impressed with the results so far.

    Thanks for this post. It is well written and informative. Too few people with our illnesses are having their stealth infections and hypercoagulation addressed. Unfortunately, the worst part of this is that many believe there is nothing which can be done for them and they have all but given up hope. Also unfortunately, it will be up to the patients to educate the docs until mainstream medicine starts to understand our illnesses better.

    Love, Mikie
  3. kalina

    kalina New Member

    Great explanation. Thanks for posting it!

  4. CelticLadee

    CelticLadee New Member

    Goodness that is a great & interesting post. I don't mind long ... information like this helps us to think.

    After reading this my first thought was ... I have never had EP Barr, CMV, HHV-6, parvovirus, Lyme or Rickettsia, Borrelia, Chlamyia or mycoplasma pathogens to my knowledge. Does everyone have one of these in order to have the hypercoagulation or can you have hyperc. from other causes with CFIDS/FM?

    You see I am thinking I have hardly ever been sick my entire life. Colds, flu, chicken pox, measles, mumps, ear infections, tonsilitis were my only illnesses until spring 2001 when I got shingles. That is when my troubles started. The symptoms for CFIDS/FM became more and more apparent after that. So if you are almost "squeaky clean" health wise so to speak until CFIDS/FM ... would your article apply to someone like me?

    If in fact you say it does apply to me. How do I find a conscientious doctor to work with me? My GP doesn't seem to be the one for helping me I fear. I gave her the article on hypercoagulation by Berg (I think his name is)& told her about your willingness to answer questions, etc.. she took it but made no comment. Haven't heard from her since my apptmt.? Would it be right to write her letter and ask about it? Can you work with a ND? There is a possibility he may be open to this. I did ask him about mycoplasma's and he said that it is rare that someone gets mycoplasma infections. I haven't asked him about hypercoagulation yet but will give him the same article next visit to see his response.

    I thank you in advance for answering. I do appreciate your input very much.

    God bless.
    My best to you,
  5. Mikie

    Mikie Moderator

    Not Sujay, but...people with FMS and CFIDS test positive for mycoplasma infections 60-70 percent and the number is probably much greater. No, healthy people hardly every get sick long term from mycoplasmas, but we do and in great numbers.

    It is very possible to have stealth infections in our systems without having been really sick when the infection was active. The fact that you have had shingles is proof that the Herpes-family virus has reactivated in your system. There may be other infections as well.

    Hope this helps until Sugay see it.

    Love, Mikie
  6. chickadee

    chickadee New Member

    I've had "something" for 23 years. Started with "heart attack like" chest pain when I was 40. In searching for answers to all of the symptoms of FM, doctors found a low blood platelet count.
    I have regularly seen a hematologist but had not been treated as count had consistently stayed above 50,000. Was finally diagnosed with Fibromyalgia 2 years ago and have been reading all I can about it. My hematologist says there is no connection between FM and ITP (low blood platelets).
    However, I seem to have the symptoms of hypercoagulation along with the other blood problem. I do have to be very careful of medications and/or supplements that I take.
    Recently platelets dropped to below 30,000 and I have been on a 3 weeks decreasing dose of Prednisone which has raised the platelets back up over 50,000. I've also not had any FM pain during these three weeks.
    Do you have any insight as to what I might be able to try that might help the fibro and not hurt the ITP? I don't think I have ever had a yeast or herpes infection and in fact I haven't even had a cold in 5 - 6 years. Hematologist says that my immune system is working overtime to remove all the platelets from my blood. Heck, the mosquitoes won't even bite me!
    Any suggestions or references to information would be appreciated.
  7. kredca4

    kredca4 New Member

    I really do think that there is much Truth in this, and that we will find even more Links in the Future.
    Any Thought's on the Red Tide? and the Little critter's that live in it?
    This is a very Timely topic for me right now, and I think Mikie has been researching this also.
    I think there is a real link to Illness's caused by the Red Tide, back in the 50's and 60's.
    Trying to express that Idea or Opinion, is very hard for me to do, not Medically inclined, lol, even tho most of my Friends are now Doctor's, their Office Staff, the Local Pharmacist, &o the Lab Tech's, that Love to draw my Blood. I can't Say most of the words I read, I understand what they mean, I just can pronounce them right, and then people become more interested in correcting me on How to Say it that to Explain to me what the Word's are saying.

    Clear as Mudd Huh? Anyway thanks for such a Clear Post.
  8. Mikie

    Mikie Moderator

    I am sorry if you are having, or have had, Red Tide problems. The little outbreaks prior to this year were not severe enough to cause me much more than a little mental confusion and a dry cough.

    This year, though, we were hit so hard by the Red Tide and it really made me sick. I flared badly and the outbreak triggered allergies which normally don't bother me much.

    The Red Tide is a neurotoxin and really exacerbates the neurological aspects of my illnesses. The respiratory problems it produces make breathing very difficult, similar to the asthma I suffered when I lived in Denver.

    Red Tide is horrible for us and I believe if one were exposed to it enough, it is sufficient to trigger our illnesses. I do not eat seafood from the Gulf, not just because of the mercury, but also because of Red Tide pollution which killed thousands of fish here this year. It even killed manatees. When it is able to kill mammals which are far larger than humans, it is a real problem.

    Love, Mikie
  9. sujay

    sujay New Member

    All I can say is I respectfully disagree with your hematologist. When I look for evidence of immune-system activation of coagulation I find it JUST ABOUT EVERY TIME. I do believe that this is an auto--immune process, and it could be the SAME ONE that's affecting your platelets. If your hematologist could be persuaded to look into this further he could be a great resource for you. If you could persuade SOME physician to order the ISAC test from HEMEX Labs you might be able to provide him with enough information to pique his interest. That's how I got interested, by seeing the results.

    The results, BTW, include the 13 year old girl with MCS (like her mom) who couldn't go to school because of severe sypmtoms whenever she was exposed to environments outside her very carefully controlled home. I've had her on antibiotics for chlamydia and mycoplasm for several months, and today, for the first time she had ABSOLUTELY NO COMPLAINTS. She goes into town every weekend, plans to graduate HS at age 16 (she's home-schooling), and looking forward to a trip to Europe with her dad in a few weeks. I was so happy to give my blessing to all of the above, but asked her to stay on the antiBx until she gets back from Europe. If she does well for a couple of months off antiBx we'll use PCR testing to check for pathogens again. It's all EXPERIMENTAL but it's DEFINITELY WORTH TRYING. I will pray that you can find a physician who is willing to work with you.

    Good luck! and hang in there,

    P.S. The mom can walk down the laundry soap aisle at the supermarket now, which is a big accomplishment for her. Enough baby steps like that and she'll be off to Europe, too, one of these days.
  10. sujay

    sujay New Member

    Hi Sharon,

    I think a lot of different pathogens could trigger this illness, which I am convinced then follows a common pathway, which accounts for all of us eventually having very similar symptoms and ending up on this board together!

    Check into the research Dr. Ritchie Shoemaker has done on neurotoxins. I think Mikie may have had some experience with his treatments (or might want to look into them, too. I'm sorry I can't really keep up with everything everyone is doing, no matter how nosy I am.)

    Let me know if you have any further questions, and good luck,
  11. sujay

    sujay New Member

    Thanks for the invite, Linda. I used to live in VIrgina and I know it's beautiful back there, though I never got to spend much time in your neck of the woods.

    To answer your question (finally) it's not uncommon to find that people had illnesses in the past that were not diagnosed, either because they didn't have sufficient symptoms at the time, or because their immune systems had not yet manufactured enough antibodies to be measured.

    Dr. Joe Brewer is an infectious disease expert in the Kansas City area who has done a lot of work with Lyme Disease. He coauthored an article with Dave Berg (from Hemex Labs) that was publishd in Volume 8, Numbers 3/4 2001 of the Journal of Chronic Fatigue Syndrome; this is the article that first brought the notion of hypercoagulability as a factor in this disease to my attention. He's now pretty convinced that HHV-6 is a major factor for most (if not all) of us, but it can be hard to pin down; it was working with Lyme Disease patients that first brought this phenomnenon to his attention.

    I'm not sure if I've answered your question completely, but please let me know if I need to clarify anything further.

    God bless you in your journey back to health,
  12. 1Candee

    1Candee New Member

    I feel some hope now for the first time in awhile. I live in Topeka, Kansas, only an hour from Kansas City and I'm really curious if I could get in to see Dr. Joe Brewer. Of course I'd need a major referral. My rheumy dx'd me with Fibro but I truly believe that CFIDS is more prevelant with me than Fibro. I find this so very interesting and the theory is so right on with what ails us. i have been to several Dr.'s here in the area and they all have their pet peeves which could be detrimental to our health. My GP said flat out that he does not believe in mycoplasma's and my Rheumy said that ANA testing is a crock. It is really up to us to help each other and ourselves. (((Hugs))) Cat
  13. sujay

    sujay New Member

    Hi Cat,

    I hope you're able to get somewhere in Kansas City. You might also try calling Hemex Labs to see if they can give you some names.

    May the wind be at your back,
  14. Mikie

    Mikie Moderator

    Thanks so much for your info. I have not seen Dr. Shoemakers webstie, but I just went there and bookmarked it for future research. It looks like a treasure trove for reading.

    I have done a lot of reading about the Red Tide algae blooms, but, unfortunately, there is not a lot known about it. We have had a team of scientists down here all summer trying to learn more about it. In Japan, they drop pieces of clay into the water which attracts the algae to it and they sink to the bottom. This is effective in keeping the blooms from killing fish higher up in the waters and from drying and blowing on the wind. Problem is, no one knows how this is affecting the bottom layers of the ocean. As much as I love shellfish, I no longer am eating it from anywhere now.

    Well, I digress, as usual :) Just wanted to thank you for your info.

    Love, Mikie
  15. kredca4

    kredca4 New Member

    I went to that site and I printed out a Long article from the site on Fibromyalgia, I plan on finishing reading this at my next Doctor's appt. next week, lol, I should have it read by then.
    There's alot more there that Iwill be going back toread, Im surprised that I hadn't stumbled on to this Dr. Shoemaker before.

    I have been looking into EI's and my Illness for about 5 years now, before I had the dx of FMS. Thanks again.