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Were you infected by another route?

Discussion in 'XMRV Testing, Treatment and Transmission' started by SickOfSickness, Jan 15, 2010.

  1. SickOfSickness

    SickOfSickness Senior Member

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    For a moment, let's say that the XMRV routes of transmission are the same as the HIV routes.

    I am wondering if there are many CFSers who would object because they couldn't possibly have been infected by those routes.

    I know there are many of you who did not have sex before you got sick. But what about:

    1) getting stuck with a needle that may have had someone else's blood, or anything else similar. I was remembering that when I was a child, we would do that "blood brothers" thing where my friend and I would have little paper cuts or something and we'd try to get our blood to contact. Also something like, if you picked up one of those needles that diabetics use.
    2) could your mother has given it to you? HIV transmits "during pregnancy, at birth and through breastfeeding"
    3) transfusion like I said... but skin grafts, organ donation, artificial insemination also count
    4) unprotected sex... also if you had protected sex, maybe the barrier broke or was faulty?

    I think sometimes we don't realize we had blood contact because... some random examples that pop into my head are: Maybe I scraped my knee and bled a lot and then a family friend was helping me and they didn't think about the little cut on their hand. Or I was helping a kid with an injury. Also because I think sometimes the broken skin is a lot less obvious. We were just itchy from a minor rash/bug bite and the skin is actually broken even though it's not exactly bleeding.
     
  2. leaves

    leaves Senior Member

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    I tested positive. am pretty confident I got it from my mum, in fact I suspect my grandmother to have it too.
     
  3. leaves

    leaves Senior Member

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    As I understand it, the virus can be present without causing symptoms. An infection (for example through saliva) can 'wake it up' and cause the start of symptoms. However, this need not occur (hence the healthy people with xmrv). Actually my mum does not have the fatigue problems that I have, but otherwise her symptoms are pretty similar.
    If it is really transmissible via saliva, I am surprised that it is "only" 4% of the population with xmrv. It is still possible of course.
     
  4. bluebell

    bluebell Guest

    My (scientist) father said that the mouse version of this virus was transmitted vertically (nursing). There have been four generations now in my family where some individuals take to their beds in their 40s and don't ever get up. My mom has fibro, my mom's sister's kid has CFS (like me). I don't know if it's transmitted in other ways, but I would bet if this virus is the real deal that it is transmitted vertically in some fashion. My small sons are constantly tired and "spacey." This is why I check this board every day, to see if someone has finally found the answer to the riddle of my family. I don't want my kids to have to go through this.
     
  5. boomer

    boomer Senior Member

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    I and my side of the family have no symptoms of cfs or fibro whatsover. My husband has no signs either. However, we are the parents of a daughter who has it. My husbands family all live at the other end of the country and we rarely see them. They tell me they have ongoing weird pains and immune system issues and they say these run in the family. One cousin of my husband has cfs. So after the testing is available in Canada we can get tested. In the case of my daughter, even as a preschooler she showed some allergies and got ear aches and was sick a lot. At about age 6 I took her to the doctor over pains in her legs at one time. But when she got mono around 17 years she got cfs and never got better again. She does get relief of some symptoms in the summer.
     
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I think I got it from my mom. And I believe my sister has it, my mother has it, and my grandmother. My sister has CFS. My mother has the neurological symptoms but not the fatigue or other immune system symptoms.

    Now, bluebell, I understood vertical transmission, as explained by Bateman and Klimas, means through the egg and / or sperm. Klimas said it is passed on, at least the mouse version, through the DNA. She even explained that based on way we pass on DNA, any one child has a one in four chance of getting it if one parent has it.

    So I think vertical transmission is not just nursing.

    Please correct me if I am wrong.

    Tina
     
  7. leaves

    leaves Senior Member

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    wow Tina, that is some family history you have there. Sound like a good prob you have the xmrv. Thinking of getting tested?
    Also, I had the idea that it was only transmissable maternally, interesting that there is also a possible paternal route. However now I mostly heard from people that 'blame their mums' so to say. But if breast milk is an additional way, and then we also have the birth itself, which is a pretty bloody thing, the chance of getting it via mum is higher than 1/4 probably, explaining why there are more such stories. Could explain Boomer's case if it can occur from the paternal line. Interesting.
     
  8. bluebell

    bluebell Guest

    Tina & Leaves, thanks - my humanities education is showing. But I think he said nursing. He mumbles a lot, so he probably said about 4 things, none of which I fully understood. The weird thing is that my dad's sister claims to have CFS and has been disabled, bedridden for 15 years. She is also completely bonkers, so we have all wondered about the CFS thing. Her mom (my grandmother) got a graduate degree and then spent the next 60 years (and counting) doing nothing but complaining about her health. Interestingly, it was my mom's dad who took to his bed at age 45. He died at 80. His mom had done the same thing. Buddha help me if it's vertical (using your, correct, definition); I may have got a double dose;-) Would explain a lot. I have had what would now be called sensory problems since infancy. One of my sons has this same disorder and had problems at birth with muscle tone, was in PT...I just have always thought our family had some unifying diagnosis that explained those people (whom I now call "we people"). My personal feeling is that this is something that has been there nibbling at us since birth and that the flu (and I had the classic onset, so I know this happens and is connected) is just the body raising a white flag in its war against...hopefully XMRV (because I am ready to feel better). People who doubt the seriousness of this disease should note that the air of gaiety surrounding the XMRV news. If we are crazy, then we are really crazy. Oh boy, I get to have the stigma of a possibly transmissible retrovirus - AND take AZT. Whoo!
     
  9. acer2000

    acer2000 Senior Member

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    Blood transfusion (4 of them actually) during a surgery I had 4 years ago. Got sick 5 months following the operation and never got better...
     
  10. coxy

    coxy Senior Member

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    How do you explain 2 out of our 4 children getting it (both when they were 8yrs old, 4 years apart), and then me getting it after them 2 yrs later?
    I had glandular fever when i was 16yrs old but got better. i didn't get me/cfs until i was 40yrs old. As I say 2 out of our 4 kids got it when they were both 8yrs old following 2 different kinds of viruses. Mine also followed a virus. Interestestingly my 4th child was put in hospital with a flu like virus, he recovered,i got the same virus and didn't get better.
     
  11. Martlet

    Martlet Senior Member

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    I'm not certain, but I think my maternal grandmother had it. She certainly had fibromyalgia, reversed sleep patterns and "Lizzie Borden" headaches as far back as I could remember . But then I also had surgery with a blood transfusion in my early thirties. And then again, two of my friends went down with ME around the same time I did - one two years before and one a year or so after, so who knows?
     
  12. caledonia

    caledonia

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    How about blood sucking insects like ticks or mosquitoes? I don't think I've ever been bit by a tick, but I've been bitten by probably thousands of mosquitoes.

    On the other hand, my mom had it, and my middle brother does too, along with me. My oldest brother had this very puzzling low grade fever for a whole year when he was 7 or 8. Nobody could ever figure it out. You can see when he was sick in his school pictures - he just looks awful. He seems to have less energy than a normal person, always taking naps, etc.
     
  13. Charityfundraiser, it seems obvious to me that you have Lyme. Apparently the tests aren't totally accurate - you may well have it.
    Apparently the way to find out is to take the antibiotics for Lyme and see if you get better.

    My money is on transmission via blood, combined with a genetic predisposing factor and an infection which 'wakes up' the virus.
    Sort of similar to the 'three strikes' theory.
     
  14. Oh, and I wanted to add personally that I have had 2 bouts of CFIDS, both following flu-like illnesses.
    Mine couldn't possibly have been sexually transmitted as the first bout happened before, well, you know...
     
  15. valia

    valia Senior Member

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    Hi Charityfundraiser,

    I have Lyme and never had the rash, as far as I know the rash and history of a tick bite should be enough for a definitive diagnosis.

    The tests are nororiously unreliable, after negative tests I saw an LLMD and was given a clinical diagnosis but did eventually get a positive test from Igenex who are supposed to be the best Lyme lab.

    I urge you to look further into Lyme as it really should be treated
     
  16. OurDayWillCome

    OurDayWillCome

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    Interesting reading! I have not tested yet, but I believe that I inherited what I have from my Father's side of the family. He has passed away, however, he has a sister who is still with us. Both my father and my aunt has/had symptoms. If I test positive, I am gong to encourage my aunt to be tested as well.
     
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Y'all might want to listen to Bateman's and Klimas' recent presentations. They both said vertical transmission through genes. But they are basing this on the mouse version of the virus. Supposedly, XMRV is a genetically mutated version of the mouse version. I would not think that was enough to say XMRV is passed through egg and sperm. But maybe they know more than what they said in their speeches. Bateman is talking in a webinar on the 18th. Maybe she will address it more specifically then.

    My family history:
    Sister 2: CFS, diagnosed in 1970s. She is two years younger than me. She rejected the CFS diagnosis after a couple of years and embraced a depression diagnosis. And now she thinks she has dysautonomia. She is convinced that whatever it is she has, she has had since birth. Has fibroid cysts in her ovaries and has had angry bladder since she was a teenager. Ended up having a fallen bladder. She is only 41 and never had any children (by choice).
    Sister 3: Has bi-polar disorder, narcolepsy and endometriosis. Also had a Bells palsy a few years ago. She is only 36. (Also did not have any children, by choice)
    Mother: had breast cancer when she was 49. Very aggressive but it has not returned in over ten years. Had gall bladder problems, etc. She is highly intelligent but very absent minded. This is the neurological symptoms I am talking about. She put some oil in a pan on the stove and went out to the mailbox one day and the kitchen caught fire. Things like this are common for her.
    Dad: Has high blood pressure, high cholesterol and diabetes. These all came on him in his 50s. (I don't think he has XMRV, or if he does, I don't think he has symptoms from it.)
    Grandmother on my mom's side: Is having fatigue, and vertigo problems and they can't find what the cause is. She had stints put in her heart last year. She struggles from depression. I think she has XMRV. She is about 70. Oh, and she had breast cancer when she was in mid 60s, just a few years ago. No sign of return.
    Grandfather: An alcoholic who all in the family think he had bi-polar. He was a lot like my mom. Highly intelligent but very absent minded.
    Aunt: Has Hepatitis B. ( I don't see any signs of XMRV, but that doesn't mean she doesn't have it. My grandmother didn't show any signs until just a few years ago.)
    Cousin 1: (descendant of above grandmother) Has depression and in the last couple of years has outbursts of uncontrollable anger. (This is very unlike her.) She was put on sabbatical a year ago to get herself straightened out. She came back. Then this last summer, it happened again and she was fired. She was an X-ray technician.
    Cousin 2: (also descendant of above grandmother) depression. She is in her young 20s. Had to quit college despite a scholarship because of the depression.
    Cousins 3 and 4: (also descendants of above grandmother) No signs of abnormality yet. (Notice I said "yet." In my family, it is only a matter of time. LOL)

    And by the way, I don't know if this has any bearing, but my grandmother has seven granddaughters and no grandsons. All my cousins who are her descendants are female. It is strange, I know. I can't help but to wonder if there is some biological reason for that. So I have two sisters and four cousins on that side and they are all women. Of course, I also thought it was that the sperms that get in are the X sperms because they are strong willed. All the women in my family have very strong personalities.

    I do plan to get tested when it is paid for by insurance. As I said, I am operating now on the assumption I have XMRV. But, my sister (number 2, the one I am closest to in age, the one with CFS) does not believe she has CFS any more and does not believe she has XMRV. But I believe this is because she got so frustrated with the whole Epstein Barr fiasco of hope, then dashed, that she doesn't want to go there. In fact, she as much said that to me last month. I asked her if I get tested for XMRV and am positive, then would she get tested. She at first said, "What good would it do. There is no treatment. I don't think I have it because what I have has been with me since birth." She said that she didn't want to go get tests for something if it isn't going to change her treatment. She said she went through that with Epstein Barr and all that information and research she did then did not do anything to help her condition. So what's the point. She said, "I don't want to go down that road again." I explained that XMRV can be with you since birth. And I said that we have so many in our family with similar symptoms and we are carrying different diagnosis. I said if we do have XMRV, then at least it will keep some in our family from being given the wrong treatment.

    My sister agreed there would be some benefit for others in the family. (It helped that I participated in a depression research study at her request about a decade ago. So she agreed that when test is paid for by insurance, she will get it.)

    If my sister has it, then I will encourage my other sister and my mother to get tested. And if they are positive, then we need to get my grandmother and cousins tested.


    Another note, some comments here seem to be saying that it is more easily passed to females than to males. But let's remember, this is a virus that goes dormant. It has to be "turned on," Dr. Mikovitz said. And, androgens, particularly progesterone is one of the hormones that turns it on. So this would explain why more women get CFS than men. And it explains why women are more likely to get CFs in their late teens or during their late 30s and 40s.

    But it could be just as many men are carrying XMRV. But if they don't have the trigger that turns on the virus, then they won't get sick.

    Tina
     
  18. sproggle

    sproggle Jan

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    Anyone else been told their initial infection was probably picked up from vermin?! I got ill in 1999 after windsurfing on a reservoir and was told i had a persitant viral infection that was similar to (but not) glandular fever and that I had probably picked it up from vermin with being in the water.

    This rang major bells for me when I heard about XMRV coming from mice. Someone must have originally got it from mice so surely its possible? On the other hand that virus could have just triggered my ME. I still worry about it being in the family even though no one else is sick, especially for when my brother has kids...
     
  19. SickOfSickness

    SickOfSickness Senior Member

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    Some data snippets about me...

    - Mother has all kinds of health problems so I feel like I may have inherited a predisposition.

    - My sister has autism and if she/I/mom has XMRV that makes a link.

    - I think I was not sick with "CFS" until I was 5-7 years old and it was after foreign travel and illness after dozens of mosquito bites OR after another fever after a routine vaccination.

    - Apparently none of the people that I've had unprotected sex (or other close contact) with have gotten ill. At least not that I know of, I doubt they have.

    People I know...

    - Friend of mine has CFS/Fibro and so does his mother.

    - Fibro female friend of mine has a daughter with Fibro.
     
  20. valia

    valia Senior Member

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    Post-lyme syndrome doesn't exist, it is an invented term used to blame the patient for remaining ill after inadequate treatment

    – “It’s all in their head”
     

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