XMRV: could it go into remission on its own?

[V99]

Excuse the 'they' in the paragraph above, I am doing that a lot lately.

 

[usedtobeperkytina]

And, and, and.

It does not cause illness in all who are infected. For HTLV-1, fewer than 4% who are infected develop the disease. I don't know if that is over lifetime or not.

Point being, many of our marriage mates might have XMRV and never show symptoms. Remember, it responds to sex hormones, particularly progesterone, Mikovits said. She said that might explain the increased prevalency in women. Maybe the peaks and valleys we have increases the likelyhood we will have illness. Also, teenagers get it commonly also, another time of hormone transmission and great variables in hormones.

Also, HTLV-1 is more common in some geographic areas compared to others: http://www.nature.com/onc/journal/v24/n39/fig_tab/1208968f1.html#figure-title

Now, I don't know why this would be, when it is a retrovirus. And the caption for the map also says that within countries, the virus appears in increase in certain areas of the country compared to others. I don't know why. But this might give you evidence that the outbreaks and clusters of CFS can fit the theory that it is caused by XMRV.

Tina

 

[Daffodil]

i dont think you can get HTLV1 in saliva but i could be wrong...

 

[taniaaust1]

During my remission I used to get what seemed to be viral infections like colds but without the runny nose or cough, preceded by the new symptom of inflammatory back pain. I'd be back in bed for a couple of days with the old ME symptoms but they would resolve over about ten days, then I'd have a period of being apparently completely well, then a "cold" would start up again. In my last year of "remission" I had 20 of these episodes with maybe a day of feeling normal between. An immunologist told me I clearly had a viral infection that was reactivating over and over (he told me to exercise on my one normal day between infections so that I'd have a reserve of fitness!). He said the lack of runny nose indicated that these episodes weren't new infections.

Im very black and white in things and wouldnt call that remission if you were still getting sick. What you described above.. is exactly how my CFS/ME first presented for the very first 9 mths, it was on and off and virally fevers, glands up, feeling achey and unwell like the flu and sore throats.. doctors kept on telling me i was catching viruses but couldnt say what. It sounds as your "remission" presentation was exactly the same as my ME/CFS slow start beginning. I cant remember having any PEM at that time (thou i did end up getting "a virus" every time id been working on a collage assignment or had an exam) but physical activities.. didnt make me "catch" anything. Im sure now it was the same thing over and over affecting me.

From there i ended up crashing and becoming bedridden long term (extreme sleeping, extreme weakness, exteme pain). Recovered and when it came back it was all Neurological (does that mean it attacked my neurolgical system at this point more.. where as the beggining was an attack on my immune system?? ). I didnt get sore throats or virus like symptoms in the very neurological stage. (maybe that means my body had given up trying to fight it????)

Is this the normal pattern?? attacking the immune system going on to minor neuro symptoms.. and later on the neurological system very badly if infiltrates things further? (with possibly remission taking place anywhere in that mix?)

No known viruses were found active in me when i was getting the immune/fluish symptoms.. i wonder if that is XMRV intial presentation... or another virus playing a part at the start.

 

[taniaaust1]

So, I suppose that a person infected with XMRV could, early in the infection, fight off a co-infection and not have any obvious symptoms (be in remission) for a period

but i went into remission after 9mths of being bedridden to the point i was having to be cared for (and lucky i didnt die) and had bad for several years before remission... so in my case one cant say i got well after something only lightly took hold. It really had me as a severe ME/CFS case.. deeply in its grip (but yeah it was first years)... but for some reason i got better.

 

[coxy]

How do you explain young children getting sudden ME from a gastric/resperatory viruses as it was in our two 8.5 yrs olds (they got ill 4 yrs apart) without being previously ill at all, i.e nothing out of the ordinary, fit and healthy to that point. I got ill after them both, although some of my symptoms started very soon after our second child got ME. My symptoms seemed to build up over a year until a nasty virus that put our youngest 3yr old in hospital triggered my full blown ME. Our youngest child (now 6yrs) is showing worrying symptoms at the moment, and has had a couple on ongoing symptoms since that hospital virus at 3 yrs old.
Any ideas?

 

[V99]

HIV is found in saliva, but it is not transmittable that way.

There are lots of possibilities right now for how children could get the disease. If they are born with it, and then get a bug that starts the virus reactivating. Or they could be born with symptoms. They may have picked it up elsewhere at a later date. It's up to the researchers now to figure the path out.

 

[*GG*]

Hi Tania - interesting that you got hit after your remission in a different way. My major symptoms (severe physical fatigue after trivial effort, poor concentration, PEM) have been the same pre- and post-remission but some have changed (I no longer have a permanent sore throat but I do have inflammatory pain which is clearly linked to my ME).

During my remission I used to get what seemed to be viral infections like colds but without the runny nose or cough, preceded by the new symptom of inflammatory back pain. I'd be back in bed for a couple of days with the old ME symptoms but they would resolve over about ten days, then I'd have a period of being apparently completely well, then a "cold" would start up again. In my last year of "remission" I had 20 of these episodes with maybe a day of feeling normal between. An immunologist told me I clearly had a viral infection that was reactivating over and over (he told me to exercise on my one normal day between infections so that I'd have a reserve of fitness!). He said the lack of runny nose indicated that these episodes weren't new infections.

XMRV is supposed to be very slowly replicating and hence not to change its spots much so I wonder if it could rehit. Also, being a retrovirus, I am confused about how it could go into remission at all - once it's in your DNA, surely your immune system has no defence?

I don't know about this stuff though, hence my asking the question - I'm hoping those knowledgeable people on the board might have some ideas!

The discussion seems to have moved onto epidemiology (no problem, it's v interesting and I've been wondering about that stuff too) but does anyone have more thoughts on my original question? :Retro smile:

Interesting sentence: (I no longer have a permanent sore throat but I do have inflammatory pain which is clearly linked to my ME).


I have had mine for 7 years, as long as I have been ill! I do not see the sore throat thing mentioned much!

 

[Sasha]

Interesting sentence: (I no longer have a permanent sore throat but I do have inflammatory pain which is clearly linked to my ME).


I have had mine for 7 years, as long as I have been ill! I do not see the sore throat thing mentioned much!

Hi ggingues - that's true, it doesn't seem to get mentioned much. I think it's one on the diagnostic symptoms list though (can't remember which one!). My sore throat lasted a good seven years or so and then gradually disappeared as I went into remission. I haven't had it since, even though my latest relapse of several years has been severe enough to make me almost completely housebound (I was bedbound in my original bout of the illness).