XMRV transmission and relationships.

[Katie]

I wonder if there is any word as of yet whether should be test + for XMRV, it is safe to kiss- has saliva as a tramsnission mode been excluded? Not as far as I know, but it's really, really, early days. That's a question you could send for the Mikovits Prohealth talk.

I also wonder if XMRV discovery has changed your lifestyle and your love life? My husband and I both have ME and were both childhood onset cases. Ironally, we're probably safest with each other but I fear for our ability to have children together. As for lifestyle, I quickly wash and put plasters on the slightest cut now, especially after grating a chunk out of my finger with a cheese grater yesterday. Even my husband joked not to get XMRV in the cheese! We're getting tested on Monday. I worry for my family but I don't know what to do to protect them properly yet other than to keep an eye on blood. I'm not worrying about saliva currently.

How to go about with new relationship, some people may know you have CFS, but how far do you go reporting there MAY be an infectious aspect of your disease? Any negative reactions? Not really an issue in my relationship but when we know where the ground (kinda) lies, we can talk more.

Does a negative test result make you worry less about transmission, despite the knowledge there may be a possibility of false negativity? A negative test won't stop me being more cautious with my blood, even the littlest cat scratch, I won't make a proper decision about my XMRV status until the NHS test tells me.

If there's anything else you want to know just ask

 

[Kati]

KAtie, never thought of asking dr Judy, directly. I will do that.

Also since the both of you have ME I think it certainly facilitates things. Sounds like your hubby has a great sense of humor as well.

For those that have a healthy partner, has it changed your lifestyle? Just a bit like the early AIDS time?

And for those of us that are single- I'd be interested to know if potential partners are being turned off by the possibility of a retroviral infection.

Thank, Kati

 

[Martlet]

I never even think of it. Not after all these years. If I was going to give it to my husband, it would have already happened and if I had XMRV at birth and have passed it to my daughters, they are enjoying their lives and it is too late to worry about it.

I have some grave doubts about sexual transmission, although I don't discount that as one very ineffective means of infection. Too many celibates with it and faithful couples where only one has it for it to be what I would think of as an STD. And as I've said before in this forum, I definitely did not exchange any bodily fluids with my two friends who went down with it around the same time I did.

However I've always been careful about blood, although I could do nothing about a transfusion I had, exactly 10 years before I got sick.

 

[SickOfSickness]

I worry about it. It bothers me a lot already since I am dating and not partnered up. For now, I guess I am going to really avoid bodily fluid exchange.

I might ask this person I am dating, and see if they choose to take the risk, but I actually feel like I'd rather just not talk about it with them, because bringing up the topic can be freaky. People will have many questions, and of course answers are not available now. It sucks because if I do NOT bring it up, then a person would be likely to misunderstand and I believe that I didn't find them attractive, trust them, etc.

I decided I will not worry about saliva unless the other person is already ill in some way. HIV is supposedly not transmitted via saliva.

On the plus side, I do feel like there will be a medication to get rid of XMRV. It wouldn't be pleasant but then it wouldn't have nearly the worry like HIV does. Still, it could take years.

I also feel like even if someone caught XMRV from me, if they are healthy I doubt they would show any symptoms. However I think down the road, if they suffered some other illness, then XMRV could show up and cause additional problems. But this is just my own guesses about it.

I have many thoughts about this, and I am sure I am forgetting to say some of them... I'm tired.

 

[DysautonomiaXMRV]

If in a year or so many of us are positive for XMRV, this will be a huge issue for people who are single.

Unless we lie (no way I'm doing that) we'll have to tell boyfriends/girlfriends we are 'infected'.
Many people will run a mile, as for making babies, well I'm sure the ladies would be super cautious.

A simple way around this would be to see out people already infected yet this is hardly
a wonderful thing either.

I see online there is a website called STD Dating, maybe this is the single people's future?

Very sad.

 

[SickOfSickness]

Yeah that sounds bad. I don't need ANOTHER problem/limitation in my life!

I did (for a short time) date someone who had CFS like me, and that was not very good, two "disabled" people!

I think it also depends on whether you are male or female, and hetero or homosexual because rates of transmission vary. And maybe some pairings have more "non-sex" things they can enjoy together?

 

[leaves]

Haah I tested positive and just send out an email to my x bf's informing them they might have a virus that no one knows nothing about. Great.

 

[thefreeprisoner]

Do single people still have sex with other single people without using condoms? Even if XMRV didn't exist surely that is a massive health risk to take, like riding a motorbike without a crash helmet...

Personally, I think that it's unlikely to be an STD. There are too many married couples out there where one has CFIDS and the other doesn't.
I suspect that it's a combination of genetic susceptibility and vector-borne/blood-borne infection (for example a mosquito bite). That would fit the pattern of infection much better.
It would also explain why a certain proportion of people get CFIDS after an operation or a blood transfusion. And why you're not supposed to give blood if you have "ME/CFS" in the UK.

 

[Martlet]

Personally, I think that it's unlikely to be an STD. There are too many married couples out there where one has CFIDS and the other doesn't.
I suspect that it's a combination of genetic susceptibility and vector-borne/blood-borne infection (for example a mosquito bite). That would fit the pattern of infection much better.
It would also explain why a certain proportion of people get CFIDS after an operation or a blood transfusion. And why you're not supposed to give blood if you have "ME/CFS" in the UK.

That's what I believe too. If it is transmitted vertically, then I would have got it from my grandmother - or at least the fibromyalgia part - but as I've said elsewhere, two friends and I - all faithfully married women with faithful husbands - went down with it within a couple of years, all diagnosed under the Holmes Criteria. None of our husbands became ill, thankfully. At that time, there was a little cluster in Ipswich (UK) and another little cluster in Bury St. Edmunds that I knew of and, although I actually had the virus that kicked it into action while on holiday in Colorado (prompting them to test me for Rocky Mountain Spotted Fever, as part of the exclusion process!) I have no idea whether that's where I caught whatever causes ME or whether it was already in my system before we went on holiday. But wherever I caught it, I have suspected some sort of vector. Ticks, fleas, a mosquito bite all come to mind.

 

[SickOfSickness]

I'd agree with genetic predisposition plus infection via various routes.

Because of sensitivities, I can't use condoms, I would have to forego it instead of doing it w/condom. So waiting is okay, but that's different from giving it up forever.

Thus far, HIV was the only thing you really really had to worry about, because the other STDs were treatable and/or they tend to have some more obvious signs like herpes sores. And if you were pretty sure the guy was not using IV drugs or having sex with men, the risk was a lot lower anyway. Of course now there are more things to worry about, like HPV is a bit worrisome.

 

[usedtobeperkytina]

LOL, Leaves. That's hilarious.

Tina

 

[Countrygirl]

[ But wherever I caught it, I have suspected some sort of vector. Ticks, fleas, a mosquito bite all come to mind.

I have just posted on another thread that folk might be interested in reading 'Do insects transmit HIV? by Lawrence Miike, Office of Technical Assessment, U.S. Congress. It was written a looong time ago - 1987 - but I think it is worth a read. The basic conclusion back then - if not now - is that insect transmisssion is possible, but rare. Ticks are considered to be out of the frame and the role of the humble bed bug is discussed (declared innocent), but larger insects such as horseflies are thought to be possible culprits. Go read and see what you think.

 

[Cloud]

None of my ex's have illnesses resembling anything like ME/CFS, and that's lots of years of intimacy and the exchange of every body fluid possible. No one in my immediate family, including my kids have ME/CFS.
I am intrigued with the idea of tic vector transmission because it explains some things that other modes of transmission do not. This is also interesting to me because Lyme and co infections are rampant here where I have roamed the mountains my whole life.
I also like the idea of the possibility that xmrv is infectious only in certain stages of replication, much like TB. Personally, I doubt that xmrv is as virulent as believed anyhow.....Of course that's just a hunch. So much to be revealed very soon.

 

[Kati]

Thank you all, it is certainly intriguing and I am sure that more than one researcher is scratching their heads at the moment. The other question I wonder is how long has this retrovirus has existed? Could it have been here with us for more than 2 generations? How does one prove that?

 

[SickOfSickness]

Yeah, none of my ex's caught anything from me that has shown up. But my hypothesis (I guess I posted it in another thread) is that they would become a carrier of XMRV and show no symptoms. And later in life if they had another bad infection, then it might flare up and cause problems long term or short term. I mean I hope it's not that way so I can feel okay about having contact with others.

I think I may have gotten mine from my mother. At least a genetic predisposition? A friend of mine has CFS+fibro and so does his mother. Also another friend of mine has fibro and her daughter does too.

 

[Cloud]

Yeah, none of my ex's caught anything from me that has shown up. But my hypothesis (I guess I posted it in another thread) is that they would become a carrier of XMRV and show no symptoms. And later in life if they had another bad infection, then it might flare up and cause problems long term or short term. I mean I hope it's not that way so I can feel okay about having contact with others.

I think I may have gotten mine from my mother. At least a genetic predisposition? A friend of mine has CFS+fibro and so does his mother. Also another friend of mine has fibro and her daughter does too.

Immune dysfunction appears to be my familial inheritance since RA, Lupus, and other autoimmune diseases are the most prevalent health problem in my family. But, I am the only one with ME/CFS.