Discussion in 'Fibromyalgia Main Forum' started by Bunchy, Oct 10, 2009.

  1. Bunchy

    Bunchy New Member

    My parents are both healthy.

    I have never had blood transfusions.

    I have never injected drugs.

    I had never had unprotected sex before I became ill (sorry if this offends)!

    I came down with ME/FM/MCS etc after multiple infections, two bouts of Mono and a minor surgery (no blood transfusion).

    I wonder if this is the cause as we are all hoping, how we got it and why more people all over the world don't have it too and if they have it why are they not symptomatic?

    Any thoughts on this?

    Love Bunchy x
  2. gb66

    gb66 Well-Known Member

    I am wondering the same thing. None of those ways of transmission applies to me. As for my mother's milk or being transmitted at birth, I don't think this virus was around when I was a newborn baby in 1940, so how did I get it in 1978? I also previously had mono as a teen, and was give live polio vaccine in the 50's.

    I became ill while in a hospital being treated for an unrelated condition. I also had injections while there but no blood transfusion. I've not had a well day since that time. It started as a very violent flu like illness, got a a little bit better over the next year, then started to come back full force and has gradually gotten worse over the last 31 years. Almost all the classic symptoms of CFS/ME and severve FM and MCS. Totally house bound except for dr. appointments.

    I haven't been able to get any other explanation for my illnesses over the years. Something is missing from this puzzle. Any opinions? GB66

  3. AuntTammie

    AuntTammie New Member

    I posted about this on another thread, and like I said there, this is just speculation, so I could very well be wrong, but it would not surprise me at all if it initially came from vaccinations. I am way too exhausted rt now to get into why, and I honestly don't want to start another fight over the whole vaccination thing, but based on all that I have read, it is certainly a possibility....and one that would explain why the CDC and others have been so vehemently against us.
  4. spacee

    spacee Member

    And it wasn't by "bodily fluids". There was a man at church who died. His doctors were baffled as to why. Then 4 of us got sick. One recovered, one improved and two of us stayed ill. My twin got it. My friend's son and daughter got it. The daughter and my twin recovered, her son didn't. My cousin got it and is still disabled. Etc, ect.

    I just am not buying that it has to be bodily fluids. Not for me and my group.

    Just my opinion which I am entitled too.

    [This Message was Edited on 10/11/2009]
  5. simonedb

    simonedb Member

    I was born in 60 and am sure had all the pertinent vax as was a doctors kid so got the cadillace health care, unfortuately in some ways as most of my ailments i have thse days are from having had good health insurance and taking advantage of what it offerd, surgeries chiros meds etc

    but not everyone who got vax is sick I wonder what the mono connection is and also the surgery/hospital connection, I didnt have blood transfusion but general anesthesia in 89 and that was when I got did in for the last time and didnt bounce back to baseline, had recoverd 9 years earlier from last bout of monolike illness (had mono and then similar bouts about 3-4x age 16-20) hmmm wonder if being docs kid would have exposed me more to potentially dangerous things somehow

    seems like could be bad luck had enough predisposing factors and environmental triggers and insults that conspired at exactly right/wrong time and threw me over the point of no return. i was btw active with er "dating" in college...another risk factor, gee maybe i just spread it around. interestingly though none of my long term boyfriends have ever complained of getting some sort of cfs fibro thing that i know of but then again not in touch with most of them.
  6. jasminetee

    jasminetee Member

    I think given all the evidence of who gets CFS and how that vaccines probably are how we got XMRV if we have it. It makes sense that the WPI can't say that. Vaccines do explain how all of us could have gotten it though if we have it and also depending on your genes maybe, some people would be fine, others develop prostate cancer, others develop fibro, others develop atypical MS and others develop CFS.

    I had some symptoms of CFS starting as a toddler like dizzy spells, passing out and IBS so maybe I had this then too but when I got EBV at 20 that was the hit that led to severe CFS.

    Transmission by vaccines would also explain why the government would want it covered up and there has been what looks like a major cover-up. I'd love to know what's in that secret ME file in the UK. Vaccine info?

    Vaccines have always been one of the suspects of transmission of CFS and with this Retrovirus discovery that's where I would place my money now.

    HIV was transmitted to gays in San Francisco and in New York City in the late 1970s by vaccine. The vaccine was for Hepatitis. If you're interested in this you can check out this link:

    You know what else? Nancy Klimas called CFS the Little AIDS. Just sayin'...

    [This Message was Edited on 10/11/2009]
  7. dojo

    dojo New Member

    Contamination of vertebrate cell lines with animal retroviruses has been documented repeatedly before. Although such viral contaminants can be easily identified with high sensitivity by PCR, it is impossible to screen for all potential contaminants. That's what makes vaccines so dangerous, contaminants only show up if your looking for them.

    Cancer research often isolates a viral contaminant, We could have acquired it from a contaminated cell line used to make a vaccine.
    [This Message was Edited on 10/11/2009]
  8. FibroFay

    FibroFay New Member

    I'm older than most of you (63yrs.) so my memory goes back further. And, I've always questioned the sterilization proceedures used by the medical profession, dentists, etc.

    Does anyone know if needles were reused after being sterilized years ago? What about other medical equipment? I've always wondered if things were as clean as they are today.

    I had all the polio shots and have suspected these too.

    We just don't know. Like you, I'm thinking of everything that could be the cause.

  9. Bluebottle

    Bluebottle New Member

    Many of us also have Lyme and co-infections. Could XMRV be transferred to genetically susceptible people by the same tick or other biting insect bite? Mice have ticks too. Viruses can live inside bacteria.

    What about dentists? Can their equipment really be as sterile as we would like to believe?
  10. Ales

    Ales New Member

    There are cases of proved HCV infection but it is impossible to trace down the way the individual got infected even if HCV is said to be 100x less infectious than HIV. It could be similar with XMRV. In my case my older brother first fell ill with CFS in about 1993, then my mother, then my younger brother and then me in 1998. They all recovered with the exception of me. Even if I had no close contact with them involving bodily fluids I could have got infected by accidentally using the same toothbrush or during shaving or sharing the same kitchen equipment.

    Ales, Czech Rep., EU
  11. RunningAntelope

    RunningAntelope New Member

    I am only offering my opinion as a warning for others, lest they not make the same mistake I think I did. This is the old chicken or egg, as it was with AIDS. How did a simian virus presumably "cross" species, though it makes more logical sense between a monkey and a human. And how is the HIV retrovirus primarily transmitted, with some outliers?

    Personally, I believe I picked this (XMRV) up from a sexual encounter (I was in an EXTREMELY LOW RISK group and not promiscuous) with a girl I had been dating for a few months and trusted, though I got careless. I don't know the incubation period, but it seems as though I got sick within four to six weeks, which may negate my theory (I will have to research this - HIV has an incubation period, but XMRV seems faster-acting). I had also moved back to Colorado, so I was in flux.

    But, I had no obvious warning signs ahead of it. I picked up a cold sore right around that time for the first time in my entire life, but I can't remember if that was just before, during, or just after getting the flu. I think it was just prior, which makes it even more curious. I might also add that I had had mono some three years prior, and it had "come back" on me when I tried to return to training TOO soon as a competitive distance runner. But I had cleared it for a solid two years before I got CFIDS, and I was no longer running BIG miles, so didn't have a lot of physical stress at that point of my life.

    What I know for certain is that my now wife acquired this from me, presumably from sexual contact before I had a diagnoses, though it either took her some time to get it or it was incubating in her as well, because she didn't acquire it right away (but she did get it while she was under duress studying for the bar exam). Just my $0.02.

    I think Dr. Cheney thinks it to be transmitted more casually in some circumstances and that many factors, phentotypic and or genotypic come in to play as to whether or not XMRV will evolve into this disease state in a given individual. But it sure acted as you would expect a retrovirus to act in me, both in terms of its manifestations and transmission mechanism. PLEASE be careful, and I don't personally donate blood or get vaccinated.

    Another curious observation is that I believe my sister has this (I was never in close proximity to her during this process), and my brother, who I lived with in fairly close contact at the height of my illness, has some type of fatiguing illness, though not to the degree I do and without the immunological abnormalities.

    [This Message was Edited on 10/11/2009]
  12. TigerLilea

    TigerLilea Active Member

    RunningAntelope - Have you actually been tested for XMRV or are you assuming that you have it because of the recent media blitz?
  13. TigerLilea

    TigerLilea Active Member

    >>> If XMRV is proven to be one cause of CFS, then it will be added to the list of conditions that must be ruled out before being diagnosed with CFS.<<<

    Yes, CFS is a group of symptoms, however, are you saying then that CFS isn't really an illness unto itself? Are we all just misdiagnosed until we find out what we REALLY have?
  14. TigerLilea

    TigerLilea Active Member

    If vaccines were the most likely source of HIV, then why was it only gay men who were getting AIDS in the beginning? Wouldn't it have been more likely that it would have been children who were coming down with AIDS in the 1980s as they are the most likely group to get vaccines?
  15. LadyCarol

    LadyCarol Member

    I have never had a vaccination of any kind prior to becoming ill with CFS/ME so that rules out the vaccination theory. Similarly no sexual intercourse prior to CFS/ME so that theory is ruled out as well.

    My sister has CFS/ME and she lives a long away from me and she was ill several years prior to me becoming ill.

    The obvious link appears to be genetic. Until we have both been tested for XMRV we'll not know if XMRV is a common factor or there are other causal factors.
  16. RunningAntelope

    RunningAntelope New Member

    "RunningAntelope - Have you actually been tested for XMRV or are you assuming that you have it because of the recent media blitz?"

    To the best of my knowledge, I've tested positive for ABs (I believe) to it. I'm going to retest. I haven't confirmed it. I'm not big on media blitzes.

    [This Message was Edited on 10/11/2009]
    [This Message was Edited on 10/11/2009]
  17. AuntTammie

    AuntTammie New Member

    compulsory is the key word in what you said....."The problem with the vaccine theory is that FM has been studied since the early 1800's and compulsory vaccines didn't start until 1920's."

    vaccinations may not have been compulsory until the 1920's, but they have been around since the 1770's....so some people were obviously getting them.....plus this study is really about CFS anyway, and even if you look at fibro, the amt of cases was not that high when it was first recognized.....this does not discount the possibility that vaccinations are the cause at all
  18. deadtired

    deadtired Member

    Bunchy, you did not mention vaccinations. I won't be surprised if we find out that some vaccine was manufactured in mouse kidneys. There were lots of retrovirus's comtaminating the polio vaccines and they have been directly related to many cancers (mesothelioma lung cancer for one) . Vaccines are given out to large groups of people world wide. That is why I have always suspected that AIDS was a direct result of vaccine contamination in the early polio vaccines. They were manufactured in monkey kidneys. I can't believe that people can believe that all of a sudden all over the world some animal virus literally "jumps" species, especially when its found that you don't come down with HIV, for example, casually, only through blood, sex or bodily fluids. That I believe is true of retrovirus's so you are asking a good question, just how did we end up with this retrovirus?? Nancy
  19. spacee

    spacee Member

    monkeys. I saw this on ABC news just a couple of weeks ago. We do have a common ancestor. They discovered this in Africa.

  20. Bunchy

    Bunchy New Member

    I definitely think there is something in our genes that makes us particuarly susceptible to these illnesses.

    Also very interesting that many of us have had multiple infections, vaccines, tick bites etc that could have "tipped the balance".

    I, too, remember feeling "not quite right" several times in my teens well before I got sick.

    And, yes, who knows whether needles used in hospitals and dentists etc are *really* sterile.

    Maybe a combination of having this virus in our systems along with one or more of the above contributory factors caused us to become symptomatic where others either never developed symptoms or recovered better.

    My sister has mild CFS which she developed after EBV - definitely suspecting a genetic link as well here.

    Love Bunchy x