Difference between sudden and gradual onset XMRV

SOC

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I've always wondered if it could be xmrv too because I had such a sudden onset. I worked the day before and was fine. I woke up April 16, 1986 with what first felt like the flu or strep throat. By the end of the day I was so sick I was bedridden. Have been in that state for the last 24 years. Antibiotics have helped some. Doctors at first thought viral menengitis, but spinal tap was negative. I just wonder if xmrv is slow to reproduce how I got so sick so fast.
I think alex3619 probably answers that question:

You then get another infection - something probably almost ordinary. It is perhaps a little more severe than normal. The immune system really kicks off. Suddenly XMRV is replicating like made. Twenty years of slow replication take place in just a few days. Viral load in the tissues goes from low to high. Now you have a real case of XAND, as the virus is now able to highly disturb the entire system, triggering major and prolgonged cytokine shifts,...
This is my thinking (pending further info):

Sudden onset
First you get an XMRV infection, maybe you have it for years with few if any symptoms, like HIV patients. Sudden onset patients then get a nasty virus that speeds up the XMRV-->XAND progression. HHV-6 is a known progression factor for HIV-->AIDS, for example.

Gradual onset
You get an XMRV infection which gradually damages your immune system over time. Eventually your immune system is so damaged that you have XAND. Also similar to a path in HIV-->AIDS

Gradual-sudden onset
This may occur when the virulent 2nd virus hits early in XMRV infection so there's less XMRV to spread (or better immune system function), or perhaps the 2nd virus is not as serious (typical flu) but comes later in the XMRV infection.

XMRV is not HIV. It is different in a number of important ways. But there are some similarities that may be helpful in thinking about XMRV and XAND.

It looks to me like there's plenty of room in the XMRV hypothesis for all the kinds of onset we've seen. It's only when we assume all our symptoms are due directly to XMRV or that XMRV acts like the viruses we're used to (flu, mono, chicken pox) that we run into trouble.

It seems most likely to me that our symptoms are primarily due to secondary infections, which themselves are the result of immune deficiencies caused directly by XMRV. CNS infections, in particular, seem very likely. Several of the herpes viruses can spread to the CNS, especially when not fully suppressed by the immune system.
 

dschlindwein

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and I'll say it again... :Retro smile:

There should be at least a third category..."gradually sudden".

I suggest that only after reading dozens of stories where the poster says they had sudden onset, but then goes into detail about multiple warnings and hints that something wasn't right, in the months or years leading up to a 'sudden' and deep crash or 'onset'.

???
Really, there should be a fourth: Suddenly Gradual.

I remember precisely the day in 1996 when the fatigue hit me, but I was still able to work (though not very well) for about six months before I just had to quit. For about a year after that first day of fatigue hitting me I just declined slowly, gradually, and without remission, until I finally ended up in bed every day for most of the day.

I have always felt uncomfortable with the binary sudden versus gradual criterion. Dannybex's "Gradually Sudden" could characterize the many who have relapsing and remitting symptoms before finally crashing all at once and for good, and "Suddenly Gradual" could describe those like me who remember the day we got sick, but not too sick, and then steadily declined without fits and starts from that day.
 

Alesh

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In my case the debilitating "eternal flu-dementia-ataxia" started suddenly like a seemingly normal flu one spring day in 1998 but since this day changed my life so profoundly I remember that I did have some unusual physical symptoms before that day: Tingling in the bowels and some unusual allergies. But if this day weren't so important in my life I would perhaps have long forgotten these symptoms as something totally unimportant. It is also interesting that my condition improved continually during the first summer and than it deteriorated dramatically in the autumn as if the putative XMRV needed other viral allies to break forth in veritable havoc.

P.S.: My profile picture expresses my wrath against CFS deniers, it is not me :D
 

ukxmrv

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In the webinar last week Dr Bateman mentioned an onset type of what sounded like "stepped"? Some of her patients may know what she means. I though maybe it was gradual but with quite memorable steps to it?
 

Otis

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In the webinar last week Dr Bateman mentioned an onset type of what sounded like "stepped"? Some of her patients may know what she means. I though maybe it was gradual but with quite memorable steps to it?
Hopefully we can get a better definition from her patients, I'm curious because I have features of how I would define it.

My most recent (I don't dare say last) obvious "step" knocked me from clinging to a job by my fingernails to being largly housebound and often bed/couch bound. I can't say my entire gradual progression has been "stepped" and it started as post-viral so I really don't know what to call myself except CCC with POTS at this point in the wild ride.

I'm wondering if anyone's seen the text of Lenny Jason's latest paper. I certainly respect his opinion.
 
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I think

I think if XMRV is the cause, then all scenarios are possible. One reason is that this virus seems to go into dormant stage, hides in tissue and is transmitted cell to cell (likely a slower progression than bunch of virus in the blood), and has triggers, including other viruses, vaccines, etc.

It seems there are many variables that can affect the ultimate level of illness, even on a day to day or hour to hour basis.

Plus, the immune system does launch an attack. So it is as though there is a Vietnam War type of scenario with virus being active, damage done, other viruses flourish, immune system attacks, XMRV goes dormant, trigger happens (cortisol, progesterone, other virus) and here we go again.

Let's say there are multiple triggers: virus, then chronic emotional stress, add perimenopause, and there you go. But then immune system recovers partially. It gains ground, we have a few good days. But because of the level of virus at that point, just the least little trigger and the virus then gets the upper hand.

So I can see gradual, good days and bad days, or sudden. Any scenario, I would think, would work since this virus has so many variables, goes into dormancy, and immune system attacks it.

Tina
 

SOC

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One reason is that this virus seems to go into dormant stage, hides in tissue and is transmitted cell to cell (likely a slower progression than bunch of virus in the blood), and has triggers, including other viruses, vaccines, etc.
[my bolding]

Do you have a reference for this?

I'm trying to get my PCP to understand how serious a situation he created when he insisted that my daughter, in remission (dormancy?), would have "no problems" with a live virus vaccine, even though I told him we were postponing Guardisil (sp) because it was a live virus vaccine. (I wasn't with my daughter at the time of the live virus vaccine injection or it wouldn't have happened, believe me.)
 
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The only time I remember being sick before April 16, 1986 was the fall of 1985. My husband and I traveled to Denver Colorado, and Los Vegas, Nevada. We both got a really bad stomach flu. We both seemed to recover from it though. Other wise I felt fine up until April 16th of 86. Then all hell broke loose.

Kathy
 
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Like H1N1?

Another possibility is that the outbreaks started when the virus first jumped from mice (or other carrier) to humans. Viruses can change over generations and perhaps it was more virulent at the beginning meaning it could infect just about anyone. Later on, over time, the virus changed and became weaker, not able to cause disease or persist in many people it infected. Or maybe some strains weaken their host gradually vs. suddenly. A successful bug might not kill or disable its host because killing or disabling the host might mean less chance for it to spread.
Didn't this happen with the recent H1N1 (Swine Flu) outbreak? I recall that it was more deadly when it passed directly from the pig to the human. Also, could it be possible there are different strains of the mouse or rat version of the virus--some more virulent than the others?
 

Adam

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Adam, that has got to be the scariest thing I have ever heard. I have had a few mental blackouts (petite mals?) where I was driving along a road I travel 2 times a day. Suddenly couldn't recognise anything. Gradually, over the course of a couple of minutes things started coming back. It was very disconcerting.
It was bizarre. They did suggest for a time that I had some weird kind of epilepsy. Gave up on that and tossed me in the waste basket diagnosis of CFS.
 

Adam

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I think alex3619 probably answers that question:



This is my thinking (pending further info):

Sudden onset
First you get an XMRV infection, maybe you have it for years with few if any symptoms, like HIV patients. Sudden onset patients then get a nasty virus that speeds up the XMRV-->XAND progression. HHV-6 is a known progression factor for HIV-->AIDS, for example.

Gradual onset
You get an XMRV infection which gradually damages your immune system over time. Eventually your immune system is so damaged that you have XAND. Also similar to a path in HIV-->AIDS

Gradual-sudden onset
This may occur when the virulent 2nd virus hits early in XMRV infection so there's less XMRV to spread (or better immune system function), or perhaps the 2nd virus is not as serious (typical flu) but comes later in the XMRV infection.

XMRV is not HIV. It is different in a number of important ways. But there are some similarities that may be helpful in thinking about XMRV and XAND.

It looks to me like there's plenty of room in the XMRV hypothesis for all the kinds of onset we've seen. It's only when we assume all our symptoms are due directly to XMRV or that XMRV acts like the viruses we're used to (flu, mono, chicken pox) that we run into trouble.

It seems most likely to me that our symptoms are primarily due to secondary infections, which themselves are the result of immune deficiencies caused directly by XMRV. CNS infections, in particular, seem very likely. Several of the herpes viruses can spread to the CNS, especially when not fully suppressed by the immune system.
Thanks for this. I would bet your analysis is pretty near the mark.
 

SOC

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Adam, that has got to be the scariest thing I have ever heard. I have had a few mental blackouts (petite mals?) where I was driving along a road I travel 2 times a day. Suddenly couldn't recognise anything. Gradually, over the course of a couple of minutes things started coming back. It was very disconcerting.
Hey RustyJ,
I have a friend with a difficult to diagnose case of chronic Lyme. She described exactly that kind of symptom, driving a well-known road and suddenly losing recognition, having to pull over and wait a couple of minutes for it to pass. She was told that it is a known symptom of chronic Lyme. Although her Lyme has not been "cured", she has had a lot of improvement from treating Lyme with long-term ABX. Those particular symptoms -- losing spatial recognition -- are completely gone.

If you haven't done it already, you might want to consider being checked by a Lyme literate doctor.
 

RustyJ

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If you haven't done it already, you might want to consider being checked by a Lyme literate doctor.
Sickofcfs. Thanks for the heads up. I was once bitten by a tick and did wonder whether I had Lyme. Trouble is, I am in Australia where there is absolutely no recognition for Lyme disease - authorities don't appear to acknowledge the parasites that cause Lyme are in the country.

I would be extremely interested in hearing otherwise, if any Aussies out there have some experience with Lyme. How I might go about getting it checked out. Might even start a thread... one day.
 
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I know this is getting off topic, but.....

Hey RustyJ,
.... She described exactly that kind of symptom, driving a well-known road and suddenly losing recognition, having to pull over and wait a couple of minutes for it to pass. She was told that it is a known symptom of chronic Lyme. ......
Interesting!! I had that happen twice in the first couple years of CFS, except that for me it lasted a half hour or so - scared me half to death. And my docs paid absolutely no attention, except to give me strange looks. It's good to find I'm not the only one.
 

knackers323

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hi Rusty, I have heard that dr Bernie Hudson an infectious disease specialist at royal north shore hospital Sydney recognises lyme disease in Australia.
 

RustyJ

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hi Rusty, I have heard that dr Bernie Hudson an infectious disease specialist at royal north shore hospital Sydney recognises lyme disease in Australia.
Knackers. Thank you very much. i'll do a bit of googling. Bah. Still trying to get my head around XMRV. Now I have to research Lyme.
Anyone else with any info on lyme treatment or prevalence in Australia?
 

ukxmrv

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There is no evidence that any of these onsets are applicable to XMRV. We need the results of our survey to see what patients actually report. XMRV may be different. We don't know yet.
 

SOC

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There is no evidence that any of these onsets are applicable to XMRV. We need the results of our survey to see what patients actually report. XMRV may be different. We don't know yet.
If you mean that none of these onsets apply to the initial XMRV infection, I agree. We know next to nothing about XMRV; it is very recently discovered (by medical research standards) and there is only a minute amount of solid research so far. Unfortunately, our survey, while interesting and possibly useful for giving researchers ideas of what to consider in their research, is not scientific.

It's quite possible, in my opinion, that all of the ME/CFS onsets we see are possible in the context of an XMRV infection. At the moment I'm thinking along the lines of XMRV -->XAND, as suggested by Lombardi et al in the Science paper. That is, that what we call "ME/CFS" is actually a later stage of XMRV infection. By that hypothesis, the ME/CFS (XAND) onset has no direct correlation to the XMRV infection, which may have occurred years earlier.
 

ukxmrv

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Absolutely, we would need a scientific study with any events that the patient can remember. That's hard because it's in the past. We would need to follow children born with the virus to see what the triggers are and somehow find others who pick it up in their lives (not sure how). Would be nice if the patient survey here can give us any clues though.