Sexual transmission?

Discussion in 'Fibromyalgia Main Forum' started by robinx, Sep 27, 2012.

  1. robinx

    robinx New Member

    I've been using condoms since the Lombardi XMRV study in Science. Now that the Lipkin study has finally driven that hypothesis deep into its grave, I'm ready to ditch them. I have a long term, healthy spouse.

    The epidemology is just not there, as far as I can tell, for ME/CFS and sexual transmission. There is zilch in the literature (big surprise.) Anecdotal evidence of sexual transmission varies wildly, with patients on forums claiming it happens, and doctors claiming it doesn't. (Dr. Bell, who was the physician in Lyndonville during the '80s era epidemic has said that he's seen couples get sick at the same time from ostensibly a common pathogen, but never one after the other, ie transmission. Klimas says it's very unusual for partners to both be sick).

    Before Lombardi I never thought of ME/CFS as infectious; it never would have occurred to me.

    Any sick people with long term spouses out there?
  2. Mikie

    Mikie Moderator

    On whether one's CFIDS/ME was triggered by an infection. Gulf War Illness, which I believe is the same as CFIDS/ME, was triggered, in many cases, by a mycoplasma. Dr. Garth Nicolson, who specializes in GWI, found that many of the returning soldiers in the first Gulf War had wives who became sick and their children were sick as well. There appears to be a genetic component in our illnesses so it may be that, in some cases, both husband and wife have the genetic defect which causes an inflammatory response to the infection. Many blood relatives have CFIDS/ME, FMS and a lot of other immune and autoimmune illnesses. So little is known about our illnesses. I do not think we should donate blood nor tissue for transplant. Some blood banks will no longer take blood from those with CFIDS/Me.

    Love, Mikie
  3. IanH

    IanH Active Member

    I was diagnosed with ME about one year after a blood transfusion. Four years later my wife and daughter came down with it both in the same month(both diagnosed by different specialists). Our daughters second boy also has it.

    In retrospect we believe our daughter had symptoms long before the full blown illness appeared. She was a sportswoman at the Atlanta Olympics when she started being affected. This is not the case with my wife who came down with it after a viral infection but our daughter had the same viral infection at the same time. No doctor was willing to investigate the virus, so we never learned what it was. (It was not your typical flu though)

    How do you explain this?

    I suspect the viral infections were a trigger for what was already a "smoldering" illness. Maybe some connection to my illness. Our grandson was born with it because his mother had ME when she had him.

    Our daughter's symptoms more closely match my wife's symproms and our grandson's symptoms more closely match mine.
  4. I came down with this DD in December 2003, a couple months after surgery. I was diagnosed with mono in January 2004, which was severe and wouldn't go away for over a year. My husband of almost 30 years has not "caught" ME/CFS from me. I have four children who also do not have this disease. And no one in my extended family has this disease either. My mom has psoriasis, which is an autoimmune disease, and I suspect she has fibromyalgia like me as well, but she has never asked her docotor about it.

    I've often wondered how many of us in the ME/CFS community also have fibromyalgia and if there is any connection. I just wonder if having an autoimmune disease makes us more susceptable to contracting something like ME/CFS since our immune systems are already compromised. I would think that this is a logical assumption.

    When I "just" had the FM though, I was still able to function normally... with a day here and there where I would have to spend a day in bed recuperating if I really overdid it. But those days were few and far between. I could still exercise and lead an active life. However, when the ME/CFS hit, I couldn't function and could hardly stay conscious initially. I had no idea what was happening to me until I got the diagnosis of mono.... but it was a "mono" that never went away. So for me, did the mono usher in the ME/CFS or did they just wrongly diagnose me with mono when I really had ME/CFS from the get go? I may never know.

    I didn't even get the correct diagnosis of "CFIDS", as my first doctor called it, till August 2010. But didn't really understand the disease, although I tried researching it whenever I could. (Like so many others, I was left languishing for almost 7 years before even knowing what was wrong with me!) And didn't get to a CFS specialist till the end of July 2011 (had to travel by car 12 hours to see Dr. Lapp in North Carolina, and in my condition, that def was not easy!). So I can't help but wonder, if I had gotten the correct diagnosis early on, how much better would I be now? Maybe even in a "permanent remission"?

    But based on my own experience, I have to wonder whether ME/CFS is brought on by a virus (or viruses) or is it brought on by an autoimmune response... perhaps our out of whack immune system attacking our cells (mitochondria, etc). If it's viral, I would think that we would be contagious.... so I don't know.... Any thoughts?
  5. Mikie

    Mikie Moderator

    That many of us recover several times from viruses before we succumb to full-blown CFIDS/ME which may or may not include FMS. Looking back, I had "growing pains" and lots of viral infections as a kid. I had ADHD as well. In my 20's, I started noticing a lot of hip pain at night. I had mumps and viral meningitis as an adult but seemed to recover from each assault. It wasn't until the mycoplasma infection that my CFIDS/ME hit. I recovered from the worst of it (crippling pain, stiffness and weakness of my legs) but I was never the same after that. I had to rest before doing anything. Ten years later, I acquired FMS full blown following an auto accident which, by most standards, was not a bad accident; however, the energy from the crash traveled up my arms and legs to injure my hips and shoulders. I finally got myself healed enough to work part time until this Sjogren's Syndrome hit. I tried to keep going but just couldn't do it. The fatigue was horrible.

    We know that illnesses can change our DNA and that our DNA can affect whether we get illnesses. The more research that is done, the more it becomes a "chicken-'n-egg question." Perhaps we have been carrying the traits for generations but are only seeing these illnesses more because of greater attacks on our immune systems. We are exposed to more viruses and bacterial infections due to increased mobility worldwide. There are more toxins in our water and air which can attack our ability to stay well. Also, more docs are seeing our illnesses and can no longer deny they exist so we are getting more diagnoses. Our nutrition has generally gone downhill as a society as well.

    Presently, no one knows much about our illnesses other than they seem to involve our immune systems' response to attacks. In my family, on my Mom's side, there are quite a few of us with these illnesses and a couple with strange, undiagnosed, immune system illnesses. My Mom had FMS and her Mom likely had it too. I have two daughters with FMS, one with Lyme, both with interstitial cystitis. My GS is only 7 but we watch for any signs. So far, so good and we are hoping that he escapes because our illnesses have only affected the females in our family.

    I think that until we know more, the smart thing is to avoid giving blood or donating tissue/organs. We can try to build our immune systems up with colostrum and probiotics. We can try different treatments, weighing the potential risks versus the potential benefits. There may be no "Cure" right now but some treatments can help us improve our health enough to function better. I also avoid places where I might pick up viral or bacterial infections, like hospitals and crowds.

    Love, Mikie
  6. nah.stacey

    nah.stacey Member

    I know this for a simple true fact, that while it may not be sexually transmitted it most assuredly is transmitted genetically.

    My father was sick all my growing up days with some unknown malady that no one could diagnose, my mother deemed it "hypochondria illness" (sound familiar anyone). Anyway he never had the energy to do anything always said he had a toothache or some other ache, because hey, how do you explain to someone you feel like you have the flu or strange body aches every day of your life and, oh yeah, nothing is wrong with you.

    Well anyway, mine didn't kick in in earnest till I had Bacterial pneumonia in '97 then a hysterectomy in 2000, I know I had mono as a teenager and was constantly sick with something, but I was also a gymnast so pain was part of my everyday life and thought nothing of it until it flattened my like a pancake after my hysterectomy.

    My second son on the other hand, started showing symptoms in his early 20's, and it has escalated from there.

    While I don't believe it is S.T. I am still careful about when I kiss my grandbabies, letting them drink out of my glass or any other such thing. This thing so often acts like a virus, feels like a virus, that I treat it like a virus.
    Since most CFS/FM patients have been diagnosed with Epstein/Barr or mono, you should absolutely treat it with care.

    S.T. NOT, any other way don't be so sure.

    Oh and also, while they can't find any known reason for my failure of the Western Blot test (the one they use to determine whether your blood is usable for donation, I have been exceedingly threatened by the Red Cross that if I even attempt to donate blood it will be considered a Federally punishable offense. I had my blood tested six ways from Sunday to determine why they would say that and called and checked with them repeatedly to ask them what they found that would make them take such a hard nose stand and they had no sure answer for me, only that it failed. Even a long string of tests done by a reputable University lab couldn't find anything. They explained to me that it is just that whatever is wrong with it they haven't developed the test to call it what it is. Go Figure.
    [This Message was Edited on 10/04/2012]
    [This Message was Edited on 10/04/2012]
  7. IanH

    IanH Active Member

    I know the cause of ME is unknown but I think what is clear enough with people with ME is that the illness is probably the result of three
    circumstances interacting. Of course it is not simple to more clearly confirm these at present because the people we are dealing with are

    The first step to complete is the separation of people into better defined groups. Then study the three factors in each group.

    The three factors are:
    genetic predisposition, the genes and snps which are responsible for poor or maladaptive immunological and neurological responses to
    environmental stressors. This area of the illness has been best studied by Prof. Alan Light and by Dr. Jonathan Kerr as well as many
    others. The response of sets of genes to exertion is now quite clear and can explain the severe fatigue experienced.

    environmental stressors, the infections and toxins which stress the immune and nervous systems and further predispose one to maladaptive
    or uncontrolled endogenous changes. Many researchers have shown the links to viral infection however toxins are as yet poorly researched.

    endogenous changes, the systemic changes which result in symptoms, such as re-activated viruses, proliferated enteric bacteria,
    upregulated cytokines and immune signalling, brain tissue, vascular and muscular changes and cell channel deficits including mitochondrial
    membrane dysfunction. These endogenous changes will be different in different people depending on their genome. There have been many
    researchers in this area and it remains the best studied because it is closest to the symptoms. It also throws up many effects rather than
    causes. It is basically the map of the illness.

    Someone says "Why did I get this when no other member of my family had it or has it?"

    Firstly can you be sure no other member had it? Secondly, can you be sure of what you have? Thirdly, you may have been subjected to
    enough of the predisposing factors to trigger the illness. Once the illness is there your set of symptoms will be idiopathic ie, pertain to you.

    What can explain the "outbreaks"? They are hard to explain but it may be that certain viruses/strains or bacterial strains may elicit such a
    strong immune response in those with predisposition that many people in the same vicinity get it. When I looked closely at the data from
    "Tapanui" (an area in NZ which had a suspected outbreak) the number of people who had a relative also come down with the illness, more or less at the same time was much greater than chance. In fact I knew one of them personally. This does support the idea of predisposition.

    Some people seem to get ME from chemical overexposure. The question is: Is it ME? Even if it is then the possible cause is still the same
    except that now the person's ability to deal with toxins is impaired and their symptoms arise from regular exposure to common toxins,
    something which most healthy people don't even notice. However the likelihood of upregulated viruses in these people is still likely, my
    daughter is an example who has been tested and shown to have all the immunological and viral signs of ME (but has MCS).
    [This Message was Edited on 10/05/2012]
  8. Mikie

    Mikie Moderator

    I think what so many want is a simple explaination, a singular "cause" of what ails us. Your have stated the problems brilliantly! There are simply too many factors to reduce our illnesses to a single cause, or even a single illness. So many with Lyme have been diagnosed with CFIDS/ME. That doesn't mean they are mutually exclusive. Is Gulf War Illness the same as CFIDS/ME? I think it is but have no scientific basis for that opinion. As stated above, I've gone from what appears to have been GWI/CFIDS/ME to FMS to Sjogrens. The conditions just keep piling up.

    Now, I have a bladder infection so it's impossible to know how the last peptide injection is affecting me. Before that, it was a fall with a bad head injury. I'm due for the last injection in Nov. I'm hoping that by then, I can keep other factors from eclipsing my peptide treatments. I know the injections have brought improvements but I just don't know by how much.

    Perhaps the recent research into how to use the genome project to better understand disease and treatments will eventually helps us. Since we are not a homogenous group, the individually tailored treatments, using our genetic makeup, may be our best hope.

    Thanks again for your posts.

    Love, Mikie

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