Another member of the XMRV +tive club

[maryb]

The title says it all really - positive by antibody test. Really hoped I would test negative so a bit in shock today, but telling myself I'm no different to yesterday, I just know more. I guess the crying will go on for a while yet
My rock of a husband just said with a hug 'at least we know what we're fighting now' god I love him so much.

 

[leaves]

Hey Mary,

I am so sorry... but welcome to the club (((HUGS))) Your hubbie is right, nothing has changed only now you know more.
We'll get through this.
Leaves

 

[maryb]

Thank you leaves your support means so much to me.

 

[ukxmrv]

Mary, I am really sorry that you didn't get the result that you were expecting. It's hard to come to terms with this under any circumstances.

Great husband of yours. He's right to hope we could finally have the answer and the possibility of treatment.

XMRV+ in the UK

 

[Sushi]

The title says it all really - positive by antibody test. Really hoped I would test negative so a bit in shock today, but telling myself I'm no different to yesterday, I just know more. I guess the crying will go on for a while yet
My rock of a husband just said with a hug 'at least we know what we're fighting now' god I love him so much.

Hi Mary,

I'm in the club too. I think I was sure I would be before getting the test, so the results didn't come as a shock. But now every time I cut myself a bleed a bit, I look at my blood with different eyes! Sort of like I need a biohazard sign on my forehead.

Sorry you are having to face this with all its shock value. But, agreed, knowing your enemy is a big help, and I actually feel relief at that...after so many years of fighting shadows. I hope you will too--after the tears have spilled. So glad you have support.

Very best wishes,
Sushi

 

[free at last]

Hi Mary better to know a truth, and able to undertand and have a chance to fight fight it, than a hidden illness with no answers.

l know how you feel, i felt the same. When i found out.

in time you will feel better in the knowing of a enemy Mary.

can i ask you Mary, what are your symptoms, do you get the poisend flu feelings,aching bones and muscles? been trying so hard to undestand connections with each other.

 

[3CFIDS@ourhouse]

Maryb, I'm so sorry this was such a shock. I understand-my initiation into the club was a surprise, too. I think you and I are in the MCS, very limited diet club together, too . I am very glad your husband is there for you, and yes, we will get through this, somehow, some way. Take care!

 

[glenp]

Big huggies for you Mary

I think some of us might be in a kind of denial, like they will find something and "poof" can fix it. Maybe thats why some feel worse with the + diagnosis ??

glen

 

[maryb]

Thanks everybody it so good to hear from people who understand.
3CFIDS@ourhouse - yes I'm in the MCS and limited diet club too
free at last - yes I wake up feling like I've been poisoned in the night - it takes a couple of hours to feel it lessen.I get a lot of pain in joints but had MRI scan - zilch - burning sensations over various parts of my body. Constant sore left ear - where my first viral onset started, never gone away. Vertigo, dizziness, fatigue, can't read books or papers or listen to music only occasionally when I am in relatively well mode, can't take sunlight on my eyes................ and on and on.

 

[free at last]

Thanks everybody it so good to hear from people who understand.
3CFIDS@ourhouse - yes I'm in the MCS and limited diet club too
free at last - yes I wake up feling like I've been poisoned in the night - it takes a couple of hours to feel it lessen.I get a lot of pain in joints but had MRI scan - zilch - burning sensations over various parts of my body. Constant sore left ear - where my first viral onset started, never gone away. Vertigo, dizziness, fatigue, can't read books or papers or listen to music only occasionally when I am in relatively well mode, can't take sunlight on my eyes................ and on and on.

Thank you for sharing that,it might teach us how, or what xmrv is doing to all of us, i have had the dizzyness off and on, not a bad one though, occassionaly ( rarely ) the room will just go sideways, have to hold on to a wall.The sleep poisening is spot on.joints too. Lets hope Judy gets on top of this, Really hope Ian Lipkin is as good as hes reputaion. just want the facts,and possibly non toxic treatment.Chimerix 157 seems our best bet from what ive read Mary, less toxic stronger effect on xmrv, and it may reach places like the brain and muscle tissue were xmrv might be hanging out, only problem is there is no effort to push it through for us.Maybe that will change if Ian finds it, and we prove the british nay sayers wrong.Theres more hope than there used to be now we have a idea what we are up against,

I too bust into tears, ( a grown man feels embarresing, dont know why it should ) mainly because i spent years tormenting myself trying to figure what could have been causing the poisening, everything bcomes a suspect after a while. but most likely none of it was. tears of resolution Mary, and a answer and vindication, after i was sent to two psychatrists one of them dear old Simon in your face simon if judy is right. And i belive hope with all my heart she is. what a better way to find the answer to our neglected disease, from the love of a mother for her sick child ( Andrea ) seems fitting that we would learn our truth in such a manner. think you will agree Mary. I live for the day that we all get a apology from proof Wessley and Reeves and others. but im not holding my breath. such is the ego of those confused and blinkered, health care proffesional
Hope your feeling a little better after this shock to you. rest well. the fight continues.tc

 

[ixchelkali]

That's like good news/bad news to the extreme, isn't it?

Great husband you've got there.

It's so hard to know what to say: "Congratulations on your diagnosis"? "I wish it had turned out to be something simpler, like tuberculosis or leprosy"? I think we need to put Hallmark to work on this one.

 

[maryb]

"I wish it had turned out to be something simpler, like tuberculosis or leprosy"? I think we need to put Hallmark to work on this one.

:Sign Good one::Sign giggle:

 

[silvermaneuk]

I have to admit to feeling very confused about all this, I cant pretend to understand it, and I have tried but my brain cant take it in. So I hope I dont sound ignorant.

What does testing yourselves for XMRV actually acheive? Especially taking into account the latest media attention.

Is there treatment? Is XMRV the actual cause of M.E/CFS or is it something that is triigered as a result of getting CFS/M.E

I class myself as having neurological M.E as I have inflammatory involvement of my brain, which shows up in lesions, my bloods and my lumbar fluid. I get many of the symptoms you guys have mentioned, to varying degree, depending on many factors, seasonal, environmental, physical activity. I have become very disillusioned with the medical profession as have been shoved from pillar to post (as you can see in my intro thread).

I wouldn't mind been tested in the Uk, dont know if I can be, but I am very confused as to what this would actually achieve for me? I dont mean to sound like a doubting thomas or anything, its just that everytime I have ever had hope, when being tested for something only to be dashed at the last hurdle.

I mean like my lumbar puncture showed inflammatory problems but nothing was done about it, no further testing done. Lesions have been proven by professor scolding to be inflammation caused but again nothing done about it. So I feel like...ok I have this test done, just say I have got it iin my blood, what difference is that actually going to make in the scheme of things. Will it mean a cure? I mean I am all for a cure!! I am sick of being sick positive thought and mood only takes you so far right?

I guess what I am saying I dont want to set myself up for something only to be knocked down again. Although I am very interested in being tested in the UK if I could afford it, as I am on disability, but I really want to know I am doing it for the right reasons. I hope I make some sense??

I hope someone knows what I am trying to get at and can perhaps help me understand this better. Have tried reading posts, but tbh I am a normal person and all that medical jargon jst goes straight over my head!

 

[jenbooks]

Hi Mary, I cried buckets when I learned I had babesia, but in retrospect I'm not sure why. I knew I had it. When I first got that tickbite 11 years ago, I got so sick, I just knew I had borrelia *and* babesia and I tried to get my own doctor, as well as an infectious disease expert, to test me for it. My own doctor, holistic, said, I wouldn't treat you with mepron anyway, so why test? (Because I was so drug intolerant already). Still, knowledge is power and there were herbs, etc. And the second doctor said, Sure, I'll test you for it, and didn't. He just ran another lyme test which of course was positive. It took another few years when I was already really chronic, to find a doctor to test.

Who knows exactly how a mix of pathogens might work. Maybe X is causative, maybe it's a passenger, maybe it's a co-conspirator. Much to find out so don't be too upset yet.

Meanwhile, anybody on this thread have speculations as to how they got it? Do you think you got it like a flu, or after a vaccine, through a tickbite, or what?

 

[free at last]

I belive i got it through sleeping with someone. i belive i carried it for years with fairly normal health ( except sever muscle twitching which started about a couple of weeks after a possible infection, and never stopped ) i belive another virus attacked my immune system, which with the xmrv created a relapsing and remitting immune problem, that has never really gone away ( retro viruses being lifelong tend to fit that idea i belive) . even with longish periods of fairly normal health ( fairly normal compared to CFS folk) im still getting immune problems and inflamation.It doesnt matter about different triggers that keep being mentioned. once the immune system sees xmrv as a enemy, even if xmrv doesnt hurt us per se/ the result might be a sort of auto immune disease. I have no proof of any of this, and maybe i should shut up, as i dont really understand it enough to comment. but it doesnt mean i know nothing ( i hope lol ) i keep looking for muscle twitching and muscle spasm links on google connected to retro viruses, i havent really found any, but that would convince me of my infection time, and nerve damage caused by the infection. the lady i slept with, showed the exact same twitch quite strong and violent, in the night in her sleep. i have big ones everyday, sometimes my whole leg muscle will contract and release, how can you catch violent muscle spasms from sleeping with some one unless its a virus. go figure. so i did.

 

[Sushi]

i keep looking for muscle twitching and muscle spasm links on google connected to retro viruses, i havent really found any, but that would convince me of my infection time, and nerve damage caused by the infection. the lady i slept with, showed the exact same twitch quite strong and violent, in the night in her sleep. i have big ones everyday, sometimes my whole leg muscle will contract and release, how can you catch violent muscle spasms from sleeping with some one unless its a virus. go figure. so i did.

I am XMRV + and have really strong muscle spasms in my thigh. The only way I can control them is big doses of magnesium and gentle back stretching exercises. I am concerned about flying to Europe with these spasms. I don't want to leap out of my seat and scream in the night! I fly for treatment with KDM in just a couple of weeks.

How do you control your spasms?

Sushi

 

[free at last]

I am XMRV + and have really strong muscle spasms in my thigh. The only way I can control them is big doses of magnesium and gentle back stretching exercises. I am concerned about flying to Europe with these spasms. I don't want to leap out of my seat and scream in the night! I fly for treatment with KDM in just a couple of weeks.

How do you control your spasms?

Sushi

Hi Sushi, i dont control them, for 30 years ive put up with them. on my face, stomach, legs arms, fingers hands, yeah you guessed it buttocks lol. they come and go, sometimes in two places at once. they seem to calm occassionaly, then flair up worse again. some areas can get stuck on them for days. my ME symptoms make them worse, even feel them on my head occassionally. ive just learned to put up with them Sushi. I notice when i google retroviruses and muscle twitching, loads come up about ME/CFS and muscle twitching. so considering XMRV is it really a stretch to assume infection of XMRV was caught by sleeping with some one, and muscle twitching was a sign of xmrv infection onset ? i would like to add i had these twitches for 15 odd years before i got ill, so if im correct about the xmrv infection onset date ( twitching starting then after unprotected nookie lol ) then that means i was one of the healthy controls for xmrv for 15 years ? my partner hasnt developed ME/CFS and she has been with me through all of it. she also, hasnt developed the twitching like mine, she says she gets it, but not often and not as violent as mine. the lady i slept with, said to me, when i told her about the twitching. she did that to another person she slept with. ermm wish she had said before we jumped in bed lol. I wonder if Mary B has any of this ?
Mary if could share that, no worries if you rather wouldnt ? any other xmrv + get this twitching, there must be some, as its strongly connected with ME/CFS and now so is xmrv. So maybe im right, but of course i dont know ?

 

[free at last]

I left a long reply to silver m
About XMRV but the net went down, wondering if anyone could point her in the info dept, as it sounds like she doesnt know whats been happening much on that. If not ill type it all again, i just love dongle connections NOT

 

[maryb]

Yes I get the muscle twitching in my legs and buttocks a lot but all over really, have to laugh sometimes if its in the side of my chest it feel like a mouse stamping out a message with its little feet or should I not mention mice

Where do I think I got it - well I think I know in fact I'm positive it was from infected hormone injections for IVF treatment. Before that time I was a fit healthy active person, had horses, dogs used to drive all over the country at weekends to show them, after the treatment gradually went downhill, then got the stress and the virus which the XMRV needed to begin its dirty work.
looking back I can see the pattern, hard to when you are living it.
So thanks to the nuns who donated their urine for the hormone content and infected me That makes me sound such a b**ch and I was grateful at the time, they didn't know and the medical staff trying to help me didn't know - we do now and should be doing something about it not still arguing whether its all in the mind.

 

[free at last]

I have to admit to feeling very confused about all this, I cant pretend to understand it, and I have tried but my brain cant take it in. So I hope I dont sound ignorant.

What does testing yourselves for XMRV actually acheive? Especially taking into account the latest media attention.

Is there treatment? Is XMRV the actual cause of M.E/CFS or is it something that is triigered as a result of getting CFS/M.E

I class myself as having neurological M.E as I have inflammatory involvement of my brain, which shows up in lesions, my bloods and my lumbar fluid. I get many of the symptoms you guys have mentioned, to varying degree, depending on many factors, seasonal, environmental, physical activity. I have become very disillusioned with the medical profession as have been shoved from pillar to post (as you can see in my intro thread).

I wouldn't mind been tested in the Uk, dont know if I can be, but I am very confused as to what this would actually achieve for me? I dont mean to sound like a doubting thomas or anything, its just that everytime I have ever had hope, when being tested for something only to be dashed at the last hurdle.

I mean like my lumbar puncture showed inflammatory problems but nothing was done about it, no further testing done. Lesions have been proven by professor scolding to be inflammation caused but again nothing done about it. So I feel like...ok I have this test done, just say I have got it iin my blood, what difference is that actually going to make in the scheme of things. Will it mean a cure? I mean I am all for a cure!! I am sick of being sick positive thought and mood only takes you so far right?

I guess what I am saying I dont want to set myself up for something only to be knocked down again. Although I am very interested in being tested in the UK if I could afford it, as I am on disability, but I really want to know I am doing it for the right reasons. I hope I make some sense??

I hope someone knows what I am trying to get at and can perhaps help me understand this better. Have tried reading posts, but tbh I am a normal person and all that medical jargon jst goes straight over my head!

Sorry for the delay to your questions Silver M i sent a long one but the net ATE IT lol.
Its not easy answering your questions but ill try
Since the WPI did there groundbreaking study finding 68% ( then later somthing like 95% ) of 101 ME /CFS patients, there have been numerouse studys that have failed to find the virus, No one is sure yet exactly why, but certain theorys have been put foward poor pcr only testing ( the WPI Did 4 different tests to find the virus, not just pcr ) the patient selection may have been poor, meaning they have been suffering more from depression and fatigue, rather than CFS/ME chronic illness. geographic clustering of the virus in certain areas was another theory put foward for the negative studys. which i find unlikely as the wpi has found the virus a large percentage of 50 patients tested at Ashford middlesex, the blood was flown to the states for testing, and xmrv was found, even though two uk studys found zilch 0 ?

Contamination is something that some uk experts have been pushing a lot ( the recent papers you mention is a example ) But that is something strongly denied is the cause for the results of the wpi, as far as i can tell ( which dont mean much ) i tend to think there results are not contamination, another study done by the NIH in the states also found a retovirus in 32 out of 38 ( if i remember correctly ) ME/CFS patients the virus they found was a variant somewhat different, but from what i understand of the same family of retroviruses as xmrv, the conclusions from this study, were that yes ME/CFS patients did seem to be infected with a retrovirus, and that although the virus found was a little different, being 95% similar to xmrv suggested this result backed up the conclusions of the wpi group.

Another interesting thing is since then, xmrv has apperently been found in the NIH samples, which if true, suggests this really could be the answer a lot of us patients have been waiting for.

More studys are due soon to try and answer a lot of the questions you ask. Some patients have been taking anti retroviral drugs ( hiv drugs ) such as AZT to see if lowering the virus load improved there symptoms, there have been mixed results from that, so again we are not really sure about anything just yet. but more answers will becoming one way or another.

I personally belive its the cause of a lot, or most of my symptoms for 16 years including the muscle twitching, which as you can see im discussing with sushi, and Mary, trying to understand what xmrv can actually do to people. so question to you Silver M do you get muscle twitch ? i dont meant the occassional flicker in your eye ( everyone gets that occassionaly ) im talking chronic twitching where a whole muscle can be jumping away by itself ? Anyway hope this info helps. sorry it took so long to help clue up a bit about this virus
Free