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Xrmv and Breastfeeding

Discussion in 'XMRV Testing, Treatment and Transmission' started by Chrissie, Aug 16, 2011.

  1. Chrissie

    Chrissie

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    Hi I am hoping someone can give me some advice on the possibility of Xmrv being passed through breastmilk.

    I have a 3 month old son who up until today has been breastfed (I am Xmrv positive by culture).

    When I first found out I was pregnant I emailed Dr JM as I was concerned about passing the virus on and also asked about breastfeeding. Her response was that it was fine to breastfeed and highly unlikely that Xmrv would be passed on to my baby. She also said that she would send me more detailed information at a later date.

    Since that time I have had no additional contact with JM until today; she has suggested I stop breastfeeding my son and that I should have done this at 6 weeks as after this date my body doesn't produce antibodies to protect him from the virus.

    I had no idea that this was the case, and I am now incredibly concerned and feeling so guilty. It was a huge struggle to breastfeed to begin with as it can be very demanding and physically draining but I persisted as I thought and have been told "breast is best". I thought I was doing the best thing for him and now I am terrified that I have passed on this awful illness.

    I know there is little I can do now other than to stop giving him any breastmilk, but does anyone have any idea or theories as to whether it is likely I have now given him Xmrv?

    Any advice would be really appreciated

    Chrissie
     
  2. alex3619

    alex3619 Senior Member

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    Hi Chrissie, nobody knows if it can be transmitted that way, nobody. There is a risk though, but it is probably a low risk. Even if XMRV can be transmitted in breast milk, the odds of passing it on are very very low. We will not know more for many years I suspect, research takes time. There is also a small chance that XMRV is not pathogenic, or that it is not really present in patients but a lab artefact of one kind or another, we will know more about that soon. Bye, Alex
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Chrissie,

    I see one of the top ME specialists and he also says they don't know enough to say how XMRV can be transmitted. Try not to worry--as Alex says, breast milk is unlikely, as is saliva--even though the retrovirus can be detected in both.

    But you might consider waiting for your baby's vaccinations until more is known as vaccinations are also under suspicion as a way we might have picked this retrovirus up (I am positive too). They have been growing vaccines in "mouse material" for some decades.

    There is just so much we don't yet know about this family of retroviruses.

    Best wishes,
    Sushi
     
  4. liquid sky

    liquid sky Senior Member

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    As others have said, nobody really knows yet. One thing you could do is slow down the vaccination schedule for your baby. Spreading them out, not giving a bunch of vaccinations at once maybe. It needs to be decided between you and a pediatrician that you trust.

    I find it amazing that they give newborn babies a hep-b vaccination as soon as they are born, even when they know the mother is negative to hep-b antibodies. I can't think of any excuse for this.

    In the mean time, try not to worry too much and enjoy your little one. Breastfeeding is very good for your baby and you are to be commended for making the sacrifices it requires.
     
  5. Overstressed

    Overstressed Senior Member

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    Hi Chrissie,

    a lot of assumptions have to be made, we still dont know IF XMRV is causing any illness, and IF, how it is transferred. Don't worry too much, there's a good chance the odds are on your side. Although they say with a comparable virus, HTLV, that it is transferred by breastfeeding, it is far from a fact. On the other hand, there is also scientific data where they followed African mothers breastfeeding their child, and they breastfeed quite some time. After breastfeeding, most(not all) children where NOT infected by HTLV. However, there was a consistency and a tendency, that children got mostly infected when their mothers chew the food before feeding them to their children. I would certainly not do that.

    I totally agree what has been said about vaccinations: just have the obligatory vaccination, but ignore the other that they try to give(like hep-B, measles, rubella and others).

    Good luck Chrissie!
    OS.
     
  6. Overstressed

    Overstressed Senior Member

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    Hi all,

    Chrissie wrote that JM is advising breastfeeding 6 weeks, because the body produces the antibodies for that amount of time. I wonder however, if these antibodies are functional. We know that XMRV infects B-cells, which are responsible for generating antibodies. I wouldn't be surprised that the produced antibodies are crippled. Could that be the reason herpes-viruses re-activate ? Does anyone have data on this ?

    Best regards,
    OS.
     
  7. justy

    justy Senior Member

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    Hi Chrissie, so sorry that you are in such a worrying situation with your baby. I agree with everything that all the other posters have said. I would also take issue with Dr M's assertion that you wont produce antibodies to protect your baby from 6 weeks. im not sure exactly what she means by this, your breastmilk will be protecting your baby from amny many harmful pathogens and bacteria that both you and she/he encounter. It may be that M.E is vertically transmitted in some other way other than by breastmilk and by breastfeeding your baby you are giving their immune system the help and support it needs for its whole life.

    Research in Africa suggests that where mothers infected with HIV breastfeed their babies are likely to become infected but show much lower rates of going on to contract AIDS than those babies who are infected in vitro and then not breastfed -showing that breastmilk still has protective properties.
    I appreciate it is a hard decision but i would think that the balance at the moment would still be in favour of breatsfeeding as being protective in general and not harmful.
    All the best,
    Justy (breastfeeding counsellor)
     
  8. Jemal

    Jemal Senior Member

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    About a minute after reading this thread I visited the XMRV Global Action page and they have recently linked a study that investigated viral transmission by breast milk in young mice:
    http://www.hindawi.com/journals/av/2011/813651/abs/

    The paper also talks about HIV and infection of infants through breastfeeding. So this might be of interest.

    Anyway, I agree with the people above me: I think we just don't know enough about XMRV to really conclude anything right now. My wife has breastfed our twins (now 9 months old), though only for 2 weeks because it was such an energy drain. We desperately need more research, so people can make the right decisions. At the moment we are groping around in the dark.
     
  9. Chrissie

    Chrissie

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    Thanks for all your replies, it has really helped to put my mind at rest and put things into perspective.

    He has had his first lot of vaccinations at 9 weeks and is due for his next ones in a week. Is it possible that the vaccine could trigger the Xmrv in some way?
     
  10. Jemal

    Jemal Senior Member

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    Possibly, but we don't know enough yet. Our twins are getting all their vaccinations by the way.
     
  11. Jenny

    Jenny Senior Member

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    Hi Chrissie - I'm sorry you've been distressed about this. If it's any help I developed ME when I was pregnant with my second child and breast fed her for 14 months. I had also breast fed my first child for 18 months two years before. My children are now 31 and 28 and have always had excellent health.

    (Also, fwiw I think we know far too little about this virus at the moment to stop something like breastfeeding, which has so many benefits.)

    Jenny
     
  12. mojoey

    mojoey Senior Member

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    I just wanted to add a few things:

    Dr. Klinghardt says that the first-born child gets most of the toxins and heavy metals from the mom:

    It seems pretty clear that a retroviral familial picture is developing, even if most family members don't get sick. One ME/CFS physician is finding that all family members of XMRV positive patients are testing high on nagalase, which can only be explained by viruses at this point. There are two possible explanations in my opinion: the family members all have some chronic herpetic viral infection or they have a retrovirus. The chronic herpetic viral infection doesn't make sense because they're healthy and whatever herpetic viral infections they have would be latent. It is already well-established that most healthy people that have herpetic infections, so if herpetic infections in healthy folks were causing high nagalase, pretty much everyone's nagalase would be high and there would've been no statistically significant difference between HIV-pos and controls. Hence, a retrovirus with a far lower incidence in the human population than herpetic viruses better fits the finding that the family members have high nagalase much.

    Kenny De Meirleir says that HIV doesn't develop into full-blown AIDS until the intestinal barrier is ruptured, and the same model applies to ME/CFS. So that could explain why all our family members are walking around with XMRV yet still appear healthy on the outside.
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Chrissie,

    With so little known about the relation of vaccinations and ME and/or MLVs, would it be possible to hold off on some of these vaccinations until more is known?

    Best wishes,
    Sushi
     
  14. taniaaust1

    taniaaust1 Senior Member

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    Hi Chrissie.

    Stay in mind that no one, not even those who are most up with XMRV really do know yet.

    I personally wouldnt breast feed due to all the unknowns but as you already have done so.. IF it is infectious throu breast milk it may of already been transmitted. Its really a case of what you want to do with such little real evidence about.

    I'd be just as concerned over the XMRV and vaccinations as IF it is being transmitted to us by mouse contamination throu vaccinations like some have suggested and if we genetically are somehow more suspectable to it. Vaccination may be posing a risk.
    You may want to consider to cut down on vaccinations till a little more is known.. hopefully there will be more research out on XMRV soon.

    Whatever ME is.. what I do know is it does run throu families (there are 3 of us affected in my family). A ME/CFS specialist once said that our children have a one in four chance of deveoping ME/CFS themselves.

    best luck with whatever you choose to do.

    ps.. there are many other factors other then just XMRV in ME to consider as well.. eg as another here said toxins. Those with ME may have other toxins which could be transmitted to our babies eg high heavy metal loads.
    We also need to consider that many of us are prone to deficiencies and our milk may not be as good as a healthy mothers... breastfeeding may put more nutritional strain on our bodies too.
     
  15. LaurelW

    LaurelW Senior Member

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    That's interesting about the one in four--my mom has ME and I have it, and I have three sisters who don't. So we're a perfect illustration of that principal.

    If it were me, Chrissie, since you've already breast-fed him for three months, I'd go ahead and continue and hope he stays well. Breastfeeding in the first year has a lot of benefits.

    I breastfed both my daughters and they are perfectly healthy in their 30s.
     
  16. Chrissie

    Chrissie

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    Thank you for all your advice and reassurance, it's good to know that there are others who have breastfed their children and they are perfectly healthy. I'm sure the risk is fairly minimal but I have put off his vaccines for a while too.

    Thanks everyone for your help, Chrissie x
     
  17. Overstressed

    Overstressed Senior Member

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    Hi All,

    I just found a very interesting report on this matter. It's about the HTLV-virus and pregnancy/breastfeeding, and if you believe in the retroviral origin of your disease, this might be of interest. Here's the link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3149377/


    Best regards,
    OS.
     
  18. aquariusgirl

    aquariusgirl Senior Member

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    Interesting stuff Joey. Any idea why my nagalese would test in range?
     
  19. taniaaust1

    taniaaust1 Senior Member

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    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3149377/
    ..
    That mother to child transmission rate of 20% of a/that retrovirus, I find interesting as that is close to the one in four chance eg 25% that our children will end up with ME/CFS themselves which some of our ME specialists have found. I wonder what the mother to child transmission rate for breast feeding is for the other retrovirus, AIDS is? 20-25%?????
     

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