Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Jul 20, 2009.

  1. ladybugmandy

    ladybugmandy Member

    if i ever get better (huge IF), will i be able to date? have a husband? or will i be doomed to just suffering alone?

    has anyone asked montoya or anyone in the know..if we are contagious?

    i have read a couple of stories where a spouse contracted it...
  2. frickly

    frickly New Member

    I have read that my mycoplasmal infection is contagious and can even be passed from mother to fetus. This type of bacteria also seems to be common in those with fm, cfs and other autoimmune diseases. I am going to see my doc today as I have been so ill and in bed all weekend due to running out of antibiotics for this infection. Could my body also be fighting a virus? Is this why I have been getting fevers since running out of antibiotics? I tested positive for EBV and wonder if it is chronic and I am the one who gave my three year old daughter mono? I am going to ask if I will ever get rid of this bacteria or will be on antibiotics for the rest of my life. And if so, what happens when they stop working? Also, can I pass this along to my family? Should I be concerned?
  3. RunningAntelope

    RunningAntelope New Member

    The epidemic nature of and clustering of the classical form of the disease (and I say classical because there's such a huge umbrella now of chronic fatigue/pain) would suggest yes. My own personal feeling about this based on observation and experience is that one is contagious in the EARLY stages of the illness when they are carrying around an obvious, acute, immune-depleting infection, with the fever, the tender and swollen lymph glands, the malaise, the opportunistic infections, etc. I'm 100% certain I gave this to my now wife. My sister has fibromyalgia and my brother has some type of fatiguing illness. But, I had very limited contact with them, at least my sister. The fact that my wife got the tell-tale infection that Dr. Cheney described in the Tahoe epidemic from me makes me less inclined to believe the genetic thesis, at least in totality. Perhaps genetic vulnerability is involved. Perhaps acute stress or trauma sets the stage. Most likely, intimate contact is necessary. Someone once told me that nurses and airline stewardesses (perpetual public exposure in close quarters) have the highest rates of infection, but I never confirmed that claim.

    Whatever the case, I am inclined to believe Cheney's thesis that the original culprit probably no longer matters. It's the aftermath that matters. Seeing as how nobody I've been in contact with after the peak early phase, including my children, parents, and best friends who I've lived with, have developed the illness makes me think the infectious nature of the disease abates over time. But I still won't donate blood (or, God help me, organs).
  4. ladybugmandy

    ladybugmandy Member

    ive kissed people and nothing has happened but if i have HHV6a in my brain and nervous system and get married, you can guess some of it is gonna be in my salilva or other fluids one day.

    i have heard of cases where people have bone marrow transplants for cancer, eradicate their EBV, but then a few years later, show EBV in their blood again - but not the same strain as they had before - the same strain as their spouse.

    the same must be true for CMV and HHV 6a.

    for those of us who arent coupled up, i guess we have to be alone on top of being sick. what the use of going on?
  5. Slayadragon

    Slayadragon New Member

    I believe that the bugs that we have are contagious....but only to people who already are primed to get sick.

    Insofar as anyone accepts the idea that toxic mold exposures are an underlying factor in this disease, it makes sense that people who are living in the same household might often both get the disease (e.g. husband and wife).

    In addition, some cities or regions appear (some of have found) to have a particularly toxic mold in the outside air (or sometimes in buildings). People who are "primed" for the illness as a result of previous toxic mold exposures may be more susceptible to being affected by this particular mold. The presence of the especially damaging mold in some areas may be responsible for the epidemics or large numbers of CFS sufferers in particular areas (e.g. Texas, the Bay Area of California, Lake Tahoe).

    It's possible that other factors (other sorts of toxicity, generally poor health, head injuries) may contribute to the propensity to develop the immune condition that seems to cause CFS.

    Most of thiese viruses and other pathogens are very common in the population as a whole. I don't know what Dr. Cheney has said to RunningAntelope (has he said anything?), but his comments about the "bug of the month club" not being useful with regard to addressing the disease makes it seem that he doesn't believe that the bugs are the underlying factor.

    I suggest looking for the mold in the environment, if you're concerned about passing the illness onto others. Likely that won't help CFS sufferers (for reasons I can explain in another post), but it may keep others in the household who might subsequently get sick from doing so.

    Of course, all of this depends on whether you believe that toxic mold is an underlying factor of CFS. Those who don't think it could be a factor should ignore this post, at least for the time bieng.

    Best, Lisa/Slaya
  6. stschn

    stschn New Member

    I believe that this is a fight between we the afficted and they the CDC. And I will go on to see the CDC finally be exposed for what it has done to us for over 24 years. The NIH has now said that the GWS is CFS. There will be an extra $750,000 dollars given for research from the national defence department and that research will not be done by the CDC. Doctor Peterson will have a blood test this year. After watching his video I truly believe that we will have some breakthroughs for us and some red faces and some a**kicking for the CDC soon. I sign every thing I can that is sent to me via the take action part of the CFIDS group. I send information to my news stations and to congress as often as my body and brain will let me. This is one of my reasons to keep going. I might be down but I am not out and I might not get anywhere with all of this by it keeps me going anger=energy (of course energy then=relaspe) but this is my life and I want to make damn sure no one else after me has to live it.
  7. jasminetee

    jasminetee Member

    My husband doesn't have this. None of my friends nor family do either. I wouldn't worry about it but I do inform people I have it so they can make their own choice about whether to be around me or not.

    There are many reasons to go on Ladybugmandy. We'll miss you if you go.

  8. denis321

    denis321 New Member

    Contagiousness probably depends on what subtype of CFS you have and the timing of exposure.............

    Another case is the Petsmart founder (Micheal Manson)and his business partner......both became ill with CFS around the same time and remained ill for many years. This was from a newspaper interview. However, Manson's wife and children from what I know do not have CFS.

    Also, I admire stchn's spirit and resolve. Not comparing CFS to the Holocaust (as I think it's silly to compare life experiences) but I was reading something about Holocaust survivors in the past and one of them said they would stay around on this planet despite their lost of family and the trauma they survived just to be proof to the world that such events did happen. So one reason I stick around is just to spite all those people who are wrong about this illness. ;)
  9. ladybugmandy

    ladybugmandy Member

    but i have heard of some spouses getting CFS from eachother. maybe EBV is not dangerous to most people...but what about HHV6a? most people don't have that one......and didnt everyone in tahoe who got that get CFS? where there some who got sick and recovered?

  10. greatgran

    greatgran Member

    I posted a post for you in ref: to the cfs chat room.. how do I go there?

    As far and the contagious, I don't know for sure but I did read some where we shouldn't give blood. I had to have a couple blood transfussions and afterwards I broke out in a terrible rash all over my upper body, they were never sure if it was from the transfusion or not. Most of the rash cleared up in a couple of months but it was for years that the rash would come and go on my stomach and legs and to this day I still have the rash appear on my legs. I often wonder if maybe I didn't get something from the blood that later caused my CFS..

    One doc told me that with CFS you shouldn't have the flu shot, but yet another wanted me to have it.. Sorry, off topic.

    I have had this for 8 years and don't know of anyone that has been with me that has it so I don't think it is contagious.. Just causes the ones that have it misery.

    God Bless,

  11. skeptik2

    skeptik2 Member

    how i love you, how i love you...that's a song, do you know it?

    I am in the battle not only with the M.E., but to the end of time in order to get the CDC also! I don't know if you saw my post about starting a lawsuit (research is going on by some very good people), or aunttammie's "skeptiks lawsuit idea' posting, but if you're interested, use the search option here. It is being worked on right now. cannot leave us! I would not know who to turn to when I want good information. you are so valuable here, I for only one would be lost without you. You are so respected and cared about; hang in there with us all...we NEED you.

  12. colinjn

    colinjn New Member

    IT seems that there has to be at least a couple of factors involved. One is a genetic factor and the other is an infectious agent. ( yeah I know I oversimplified it, but we could argue the details till the cows come home) So, if your sig-other doesn't have the genetic factor ( my spouse doesn't seem to) then everything is fine. This simplified example has lead me to wonder if the "cluster outbreaks" could be amongst populations that share some distant genetic links.

    But my recent concern is the fact that prions are being talked about in the recent studies. If we are prion factories, then we are walking time bombs for ourselves and others. Nobody seem to be talking about this.
  13. momof27

    momof27 New Member

    I am one that got it from Tahoe back in the 60'S, I have raise 27 children and have a husband of 36yrs NO one else in this family has it but a sister and a grandson of my first born daughter, adopted kids didn't get it ,the rest of my kids didn't get it but my grandson YES and sister.
    [This Message was Edited on 08/08/2009]

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