Mother and son XMRV positive by culture- rest of family Negative! - Personal story

[ldhunter]

There is so much work that still needs to be done in the CFS community! It seems every time I turn a corner thinking I have an answer, I end up with more questions. I, unlike a lot of people, hoped that I did not have XMRV. Unfortuantely, I am positive by culture. What is really interesting is my husband, and children are negative. I would have assumed by the nature of my relationship with my husband, and the fact that I breast-fed my children that they would also be positive. I've never had a blood transfusion, so I have very few ways I could have aquired this.

I feel like there are a couple of scenarios that can explain it:

1.The testing still needs to be fine tuned (false negatives?)
2. I received the virus during a Tetanus shot prior to me becoming ill (contaminated vaccines???).
3. XMRV, despite current theories on its transmission, is a piggy back virus.

Currently, I still lean towards number three. Thoughts or comments?

 

[Robin]

Wow, thanks for sharing that. That's very fascinating that you got your entire family checked. I have no speculation about transmission at this point but appreciate your post.

 

[Frickly]

Thanks for sharing your results. I guess we will all have to be patient and wait for the science.

Take care,

There is so much work that still needs to be done in the CFS community! It seems every time I turn a corner thinking I have an answer, I end up with more questions. I, unlike a lot of people, hoped that I did not have XMRV. Unfortuantely, I am positive by culture. What is really interesting is my husband, and children are negative. I would have assumed by the nature of my relationship with my husband, and the fact that I breast-fed my children that they would also be positive. I've never had a blood transfusion, so I have very few ways I could have aquired this.

I feel like there are a couple of scenarios that can explain it:

1.The testing still needs to be fine tuned (false negatives?)
2. I received the virus during a Tetanus shot prior to me becoming ill (contaminated vaccines???).
3. XMRV, despite current theories on its transmission, is a piggy back virus.

Currently, I still lean towards number three. Thoughts or comments?

 

[Kati]

ID hunter have you had CFS prior to have your kid?

 

[SunnyGal]

There is so much work that still needs to be done in the CFS community! It seems every time I turn a corner thinking I have an answer, I end up with more questions. I, unlike a lot of people, hoped that I did not have XMRV. Unfortuantely, I am positive by culture. What is really interesting is my husband, and children are negative. I would have assumed by the nature of my relationship with my husband, and the fact that I breast-fed my children that they would also be positive. I've never had a blood transfusion, so I have very few ways I could have aquired this.

I feel like there are a couple of scenarios that can explain it:

1.The testing still needs to be fine tuned (false negatives?)
2. I received the virus during a Tetanus shot prior to me becoming ill (contaminated vaccines???).
3. XMRV, despite current theories on its transmission, is a piggy back virus.

Currently, I still lean towards number three. Thoughts or comments?

Thanks for sharing this. It's very interesting. The scientists do say that it's a sneeky virus and very hard to find, so I would lean to thinking possible false negatives. Do your husband and your kids have any symptoms?

I was positive PCR and culture. I haven't had my family tested. I'm pretty sure my kids must have it but thankfully they currently aren't ill. I dread them going through puberty as I know that's a trigger for CFS. My husband has some symptoms as well but interestingly things like PEM he's also had nearly all of his life (also contaminated vaccine?). I have a theory about people with similar pathogens/illnesses "finding" each other. Some how if you have the same bugs/issues you kind of jive together. :Retro smile:

I believe I've had XMRV most of my life. I'm currently thinking from contaminated vaccine. I had gradual onset of CFS so the piggy back virus idea doesn't resonate with me. It'll be very interesting to see how all the research on this unfolds.

Thanks again for sharing. Interesting stuff.

 

[talkingfox]

Keep in mind, too, that not everyone who's exposed to a retrovirus comes down with it....or any other critter for that matter otherwise the entire human race would be dead. Some get them and never get sick (just carry), some get them and don't get sick for a long time and some never get them at all. I saw a really good show on Science a couple of years ago that put forth the theory that the whole retrovirus immunity/resistance thing may be linked to the very genes that kept people from catching or led to recovering from the Bubonic Plague. Interesting stuff.

My husband is case and point for this, using HIV as an example. He got severely bitten by a guy who was bleeding from the mouth and was HIV+. He still carries the scar. The doc said he was at about the highest level of infection risk that he could be. They kept an eye on him for years and he had regular testing...never came up positive.

Nancy Klimas was saying that the odds for kids getting XMRV via vertical transmission would be 1:4 due to possible genetic combination, about the same as HIV.

All this is assuming that XMRV is transmitted like the other retro-viruses that are known to affect humans.

 

[redo]

There is so much work that still needs to be done in the CFS community! It seems every time I turn a corner thinking I have an answer, I end up with more questions. I, unlike a lot of people, hoped that I did not have XMRV. Unfortuantely, I am positive by culture. What is really interesting is my husband, and children are negative. I would have assumed by the nature of my relationship with my husband, and the fact that I breast-fed my children that they would also be positive. I've never had a blood transfusion, so I have very few ways I could have aquired this.

I feel like there are a couple of scenarios that can explain it:

1.The testing still needs to be fine tuned (false negatives?)
2. I received the virus during a Tetanus shot prior to me becoming ill (contaminated vaccines???).
3. XMRV, despite current theories on its transmission, is a piggy back virus.

Currently, I still lean towards number three. Thoughts or comments?

Thanks for getting your whole family tested.

I think that one of many (and the most common) way of getting this is by a insect sucking blood on us. Like malaria. Only that we don't get ill right away, but a latent infection.

And many years down the line when we get some other problem with our immune system (such as HHV-6, mononucleosis, severe stress, a vaccine etc) then the illness breaks out, and we feel sick.

 

[leaves]

Thanks!

First of all, thank you so much for sharing this information AND for having your family tested.
It is very interesting that they test negative and you test positive.
Some important points
- a retrovirus is not THAT infective; for example hiv is not always passed through kids, and chances of getting it after sexual intercourse are not that high as one would expect (of course we do not know how this is for xmrv yet). My expectation is that whenever you are asymptomatic/ viral load is low, the change of infecting someone reduces. Also chances of infection are lower when the amount of shared fluid, or concentration is smaller. How was your cfs status when you were pregnant?
- Even if one is positive, this need not show up in the culture test, especially for low/ asymptomatic infections
Lets hope the serology test is available soon, it should give us some more definite answers!

I believe Mikovits and friends have repeatedly argued against the piggy bag theory, I also dont see, scientifically, how it could come about, at this point I am not yet ready to adopt that hypothesis. But who knows,... anything is still possible.

 

[ldhunter]

It is interesting. I was not symptomatic when I had my children, but shortly after my second I had a 'nasty flu'. I then was functional, but extremely tired all the time, and it just kept going on from there. I was officially diagnosed after having a year long strep infection in my kidneys, coxsackie virus, chronic EBV and an echovirus all in the same year. I think the reason I am so confused about transmission is because of the outbreaks. Someone mentioned mosquito bites-that would make so much sense too!. My children are not symptomatic, but one has low NK cell function. False negative? Possibly.

 

[Summer]

Genetic Predisposition to become infected

Virus Tied To Chronic Fatigue Syndrome

"MONTAGNE: You now know what is associated with Chronic Fatigue
Syndrome. Does it tell you how someone gets it?

Dr. PETERSON: It's an excellent question, because I think it's required
probably to be a genetic predisposition like there are for most diseases.
And then there has to be the infectious agent and then a combination of
host factors, probably immune factors, et cetera, that propagate the
disease."

I cannot find a link, but only 10% of the population is vulnerable, so 90% can never become infected, unlike HIV where anyone with opportunity can become infected. Dr. Judy discussed this and it can also explain families where we see more than one member with it and others where only one is affected.

 

[oerganix]

Congratulations, or condolences, whichever you would like, at this moment. At least you know, for what it's worth right now.

Re: piggyback viruses, Dr Klimas has said that there is no such concept in science and she doesn't know where this idea came from. She discounts it. She did say that having XMRV might be the tipping point of allowing other problems to surpass our immune systems' capacity to deal with all the stuff that we naturally carry around most of the time without it disabling whole bodily systems. It might be the straw that broke the camel's back.

Good luck to you and your family. Hope you'll keep posting here.

 

[ldhunter]

Revision!!

Change or results here... My son (1st born) does have XMRV by culture. So, my husband and daughter do not have it. He is not symptomatic. So sorry for the screw up! MY husband thought the doctor said one had it, but I had fibro brain and just got the hard copy results today. I'm sad for him! But, I can keep a watchful eye for the signs.

 

[Funkster]

Idhunter, I am sorry to hear that.

Is this VIPdx tests?

I came down with CFS/ME last year. Gradual onset. First symptoms in March 2008.

I have a son (20 yrs now) that came down with EBV/mononucleose in March 2008. Never recovered after that and are now diagnosed with CFS/ME last month.

I have a son (5 yrs) with mild autism/aspergers symptoms. Currently undiagnosed. Just starting the process.

I am now tested at Red Laboratories (De Meirleir) in Belgium for immun dysfunctions, viruses, bacterias etc.

They dont offer XMRV testing rigth now. They are licencing the test methods from WPI. Awaiting new test methods before the start testing again.

Do you have any tips on how I shall take this further?

What will you do with your results in the short timeframe? Any treatment that you will try?

 

[subtr4ct]

Change or results here... My son (1st born) does have XMRV by culture.

Thanks for sharing--I'm sure many of us are concerned about familial infection. One question, though, if you don't mind sharing a tiny bit more info. Is the son (1st born) who is now revealed to be XMRV-positive the same child that you previously mentioned had low NK cell function? Thanks again.

 

[Hope123]

I have to post this here - might have posted it elsewhere - sorry, memory not too good. This is about a family with multiple members with CFS - the ones affected had low NK cell function. The unaffected family members had NK cell function between those affected and normal controls. Of course, it's hard to tell if the family originally had lower levels of NK cells (genetic cause?) or something happened among them (infection?) that lowered levels for everyone. Family studies often give great insight into illness causes. I'd be interested too about NK cell function in your family if you are willing to share. I'm trying to convince someone to look into families with CFS as hardly anyone has done this.

Clin Immunol Immunopathol. 1998 Jul;88(1):96-104.

Dysfunction of natural killer activity in a family with chronic fatigue syndrome.
Levine PH, Whiteside TL, Friberg D, Bryant J, Colclough G, Herberman RB.

National Cancer Institute, Bethesda, Maryland, 20892, USA.

A family was identified with 5 of 6 siblings and 3 other immediate family members who had developed chronic fatigue syndrome (CFS) as adults. All 8 met criteria for the CFS case definition as recommended by the Centers for Disease Control and Prevention. Sixty-eight blood samples were obtained over a period of 2 years from 20 family members (8 affected, 12 unaffected) and 8 normal controls. All blood samples were tested for NK activity in 4-h 51Cr-release assays and for the number of circulating CD3-CD56(+) and CD3-CD16(+) by flow cytometry. NK activity of the affected immediate family members (cases, n = 8) was significantly lower (P = 0.006, two-sided) than that of the concurrently tested normal controls. The results for unaffected family members were intermediate between these two groups, and the pairwise comparison of unaffected family members to either cases or controls showed no statistically significant difference (P = 0.29, two-sided). No differences were seen between the groups in the absolute number of CD3-CD56(+) or CD3-CD16(+) lymphocytes in the peripheral blood. Familial CFS was associated with persistently low NK activity, which was documented in 6/8 cases and in 4/12 unaffected family members. In the family with 5 of 6 siblings who had documented CFS, 2 of their offspring had pediatric malignancies. Low NK activity in this family may be a result of a genetically determined immunologic abnormality predisposing to CFS and cancer.

PMID: 9683556 [PubMed - indexed for MEDLINE]

 

[Hope123]

Idhunter,
I came down with CFS/ME last year. Gradual onset. First symptoms in March 2008.

I have a son (20 yrs now) that came down with EBV/mononucleose in March 2008. Never recovered after that and are now diagnosed with CFS/ME last month. [/QUOT

Did you start having symptoms the same time he came down with EBV?

 

[Gerwyn]

There is so much work that still needs to be done in the CFS community! It seems every time I turn a corner thinking I have an answer, I end up with more questions. I, unlike a lot of people, hoped that I did not have XMRV. Unfortuantely, I am positive by culture. What is really interesting is my husband, and children are negative. I would have assumed by the nature of my relationship with my husband, and the fact that I breast-fed my children that they would also be positive. I've never had a blood transfusion, so I have very few ways I could have aquired this.

I feel like there are a couple of scenarios that can explain it:

1.The testing still needs to be fine tuned (false negatives?)
2. I received the virus during a Tetanus shot prior to me becoming ill (contaminated vaccines???).
3. XMRV, despite current theories on its transmission, is a piggy back virus.

Currently, I still lean towards number three. Thoughts or comments?

If you are positive by culture then the amount of "free" virus is relatively small .B an T cells (containing XMRV) cant cross the placental membrane.during breastfeeding the components are IgA,specific antiviral antibodies,leucocytes(neutrophills and macrophages) any free virus should be dealt with by this mechanism and again no B and T cells that is the only explanation i can think of.

 

[ldhunter]

Someone asked if my son had the low NK cell function... The answer is no. His NK cell function is in the mid 30's. So my child who is XMRV negative has the very low NK cells. Feeling a bit on edge to say the least. Yes, these tests were done by VIPdx.

 

[Funkster]

Yes, my first symptoms was at the same time. I am not able to see any connection, as he lived in a different place at the time (March 2008).

All three of us spent time together 3-4 months prior to March 2008.

 

[acer2000]

Even if his NK cell function is "normal" what is the NK cell count? I have had CFS for a few years and my NK count is low, but they seem to function reasonably well. ie my function is in the 30s, but I don't have many of them... just curious.