• Phoenix Rising needs funds to operate: please consider donating to support PR

i think i got XMRV

Messages
96
Likes
0
Location
Chicago
The sexual activity is very possibly unconnected, no one knows too much about XMRV transmission but with HIV for example the risk of female-to-male transmission is only around 0.04% per act. http://www.ncbi.nlm.nih.gov/pubmed/19179227
Before i came to this forum i was in thebody.com and at poz.com because mi first concern was HIV and many many people that went to these sites when they got sick after having unpotected sex kept testing negative for HIV for months even years and guess what? the vast majority of them are now testing + for XMRV many people kept thinking they had some sort of undetected HIV strain because a lot of them have had many OIs and other symptoms like candida, swollen tongue, brain problems including lesions, skin rashes, IBS, neurological problems, dry skin, and the list goes on and on..im telling you all retroviruses have the same modes of transmission that would explain why there's CFS "outbreaks", the good thing about this virus is that it doesn't seem to affect the number of lymphocytes that's why many people with CFS went on struggling for years getting all types of responses from Doctors including the most typical ones " it's all in your head, u need a vacation , you are stressed out" because the lymphocyte counts is the very first thing Drs look at when they do a CBC if they look normal they assume right aways you have no infection of any type.
 
Messages
96
Likes
0
Location
Chicago
Hi Roma, I woke up one morning in the 80's with a burning tongue. No one could tell me what it was. I too have the teeth marks on the side. I was dx'd with FM a few years later and with CFS after the flu shot of 93. I went into remission after a lot of work on my part and many doctors in 2001. I still had a burning tongue though and the roof of my mouth as well...maybe I just thought I was in remission but I felt like a normal person and the burning became a part of me. I went into remission in 2001 and was doing fine or so I thought. I crashed in February 2008. I was very sick again and I rested but could not oversome it. I recently saw Dr. Klimas, no one has ever looked at my immune system like that. EBV and HHV6 had reactivated, killer cells were only at 25%and cytokines 5 times what they should be. No wonder I was sick and in pain. Now my lips were burning as well. They are so burned they stay chapped. I started Immunovir 2 months or so ago. I do feel fluish and tired but that is to be expected, means it is working. I have been on LDN over a year and Skip at the pharmacy said the killer cells would have been even less if I had not been.
I have not tested for XMRX Dr. Klimas thought it was still too soon, too many false negatives. It will not be long though. I have known a few CFS people with the burning tongue. Good luck to you, you are in the right place here. I have not been able to post for a while, I changed everything and now I can again!
Hey Cort, do I have to start at 1 again. LOL
yeah burning tongue is one of my symptoms too, you had 25% of T cells and cytokines 5 times which means your cytokines were having a war with the virus in you Brain i bet you had some real bad neurolgical problems at that point, yeah this virus seems to go after the T cells as well which sucks..hopefully you will get better soon...as far as testing im seeing a neurologist next month and they're gonna do a lumbar puncture to see what they find... as far as too many false negatives i really do think the a lot of CFS cases are linked to XMRV but not all of them, having both antibodies and culture tests give you a very small chance of getting a false negative..
 

wdb

Senior Member
Messages
1,392
Likes
2,975
Location
London
Roma you do seem oddly keen to self diagnose yourself with XMRV considering the depressing prognosis it currently carries. You really really do need to go and thoughtfully explore and rule out any other plausible and possibly curable explanation for your symptoms, of which frankly there are likely many, before resigning yourself to having XMRV.
 
Messages
96
Likes
0
Location
Chicago
Roma you do seem oddly keen to self diagnose yourself with XMRV considering the depressing prognosis it currently carries. You really really do need to go and thoughtfully explore and rule out any other plausible and possibly curable explanation for your symptoms, of which frankly there are likely many, before resigning yourself to having XMRV.
I have already been tested and re- tested for every other illness out there by many doctors and many hospitals, right now im in the"it's all in my head stage" i feel sick all the time weak, with cognitive problems, IBS problems skin rashes, lower back pain, burning tongue, white thrush, swollen tongue, swollen spleen, my face gets numb and i feel an aura in my head after all the testing they have done and having found brain demyelination, just yesterday i went to see an infectious disease specialist and he asked me if i was stressed out and depressed he suggested i take some time off from work, because he saw my medical records and saw that i look perfectly fine and im not in pain(obvious pain) he said im fine and he doesn't think there's anything major going on when clearly i cannot have a normal life, i know it's something that i got sexually transmitted and i have been tested for all know to man STDs except XMRV before this episode i had a full normal life with out any illness at all, plus i have all the symptoms that a retrovirus would give you, i even ask the Dr yesterday i said if i came to your office with all these symptoms and all this complaints and told you i was HIV+, it would all make sense right? it would explain all the symptoms and he said "well yeah" i suppose..i told him about XMRV and he said that is a virus which he thinks does not cause any major illness...the fool..
 

dannybex

Senior Member
Messages
3,425
Likes
2,469
Location
Seattle
Of course I have no idea what's going on, and am certainly no scientist, but it's my understanding that XMRV replicates very, very slowly, and hides in various tissues. So I'm having a difficult time understanding how you could have picked it up from one encounter and your health could deteriorate so quickly if it was caused by XMRV alone...but maybe I've missed something in the thread.
 
Messages
96
Likes
0
Location
Chicago
Of course I have no idea what's going on, and am certainly no scientist, but it's my understanding that XMRV replicates very, very slowly, and hides in various tissues. So I'm having a difficult time understanding how you could have picked it up from one encounter and your health could deteriorate so quickly if it was caused by XMRV alone...but maybe I've missed something in the thread.
when i first got sick after this encounter i thought i was having the typical HIV ARS, but i never had fever or diarhea it seemed like some sort of virus to me that it was affecting all my body i have some rash on my back, i had some pimple like bumps on my right hand, and then i started with a bunch of other symptoms, which by now most have vanished and i would say im 90% of being back to normal but the remaining symptoms are persistent and won't go away which makes me think that when i first started to get all the symptoms it was when i had the so called "virus spike" like when you get HIV is when the virus is replicating the fastest and after a few weeks your body makes antibodies ans it's able to control it sometimes for many years, this seemed to be the case with me i got really sick for a couple of months with all sorts of symptoms and slowly but surely most started to disappear, i would think that the chances of getting infected with a retrovirus are more when the infected person has a weak immune system meaning they are shedding more virus and i know the chances are more from man to girl than from girl to man, i have read of hiv magnetic couple where the woman is HIV+ under treatment and they have unprotected sex and the guy doesn't get infected it's because the meds stop virus replication which equals less virus shedding, but in this case if the girl i was with is actually XMRV+ and i know she has been really sick for a long time and weak that would mean she is shedding more virus which it would mean there is a big chance i could've gotten inefected the very first time when the condom broke..i hope this makes sense and it doesn't sound too complicated..
 

wdb

Senior Member
Messages
1,392
Likes
2,975
Location
London
I have already been tested and re- tested for every other illness out there by many doctors and many hospitals..
Oh, excellent, that's reassuring, well don't give up looking for an answer, you are likely going to have a few years on your hands anyway before there is any confirmed treatment for XMRV. Hope you get to the bottom of it.
 

Sushi

Moderation Resource Albuquerque
Messages
18,835
Likes
31,337
Location
Albuquerque
Of course I have no idea what's going on, and am certainly no scientist, but it's my understanding that XMRV replicates very, very slowly, and hides in various tissues. So I'm having a difficult time understanding how you could have picked it up from one encounter and your health could deteriorate so quickly if it was caused by XMRV alone...but maybe I've missed something in the thread.
Hi Danny,

I'm no scientist either but having read the study where they infected monkeys and then traced the path of XMRV week by week, it quickly went to the prostrate and vaginal tissues, and soon after to the brain. I suppost our "infectivity" might be related to where the virus is active at the moment. And since it was also reported that it disappeared from the blood after a while, that makes it harder to find. Yet, stressors reactivated it in the blood. I'd guess that one of the reasons I got an XMRV + result by culture was that my blood was drawn during a period of high stress and major exhaustion (have just moved across the country). I'm hoping that that this + test report is the silver lining for the super-exhausting move that set my friend and I back health wise.

Sushi
 

Marg

Senior Member
Messages
343
Likes
62
Location
Wetumpka Alabama
yeah burning tongue is one of my symptoms too, you had 25% of T cells and cytokines 5 times which means your cytokines were having a war with the virus in you Brain i bet you had some real bad neurolgical problems at that point, yeah this virus seems to go after the T cells as well which sucks..hopefully you will get better soon...as far as testing im seeing a neurologist next month and they're gonna do a lumbar puncture to see what they find... as far as too many false negatives i really do think the a lot of CFS cases are linked to XMRV but not all of them, having both antibodies and culture tests give you a very small chance of getting a false negative..
Hi Roma.

The burning tongue started years before I even had any other problems. I was fine but had been d'xd with IBS. I am now thinking that since all digestion starts with the tongue and the bowel is inflamed that that could but what started it all ... who knows? Dr. Klimas is thinking cocksackie for the bowel inflamation. She believes in going slowly and do not harm.

I saw a homeopathic doctor in the 90's and his testing and found cocksackie. His remedies made me very sick so I asssume it was working. He moved and that was the end of that and I was getting better, so I thought. So, what ever this is that causes it all, the only thing as you say and I agree totally is to fix the broken immune system. I am working very hard at it. It does not matter what we test positive for if the immune system is not right...what took it down and why? Why can't we handle stress like normal people when most of us are the go getters? Is that it? I always liked to have things going on and busy. I was not a sicky child, wonderful growing up, so some of the things I read really makes me angry. Is it really stress or something that made us unable to handle it? Is fun stressfull? What was it? My dad had a "nervous stomach" and colitis at one time hmmmm. Well if we can figure that out.......our time is coming, 2011 will be our year!
 

acer2000

Senior Member
Messages
814
Likes
641
It is certainly possible that XMRV can be caught the way you describe. We don't know yet the routes of transmission or the likelihood of infection via those routes. However, I'd like to point out that the chance of a male catching HIV or HTLV from a female due to "normal" unprotected sex is very very small - unless there is an open cut or something that allows direct blood to infected fluid contact. It does happen, yes, but its far from a certain thing. Its even a pretty small chance going the other way, from infected male to female - although more likely than from female to male. XMRV might be easier to transmit via sex, or even via other bodily fluids that are exchanged during intimate contact, we don't know yet.

Either way, it sucks to be sick and not know why. So I wish you luck in finding the cause. It couldn't hurt to be tested for XMRV, especially when they agree upon a reliable testing methodology. Right now there is just one lab doing it, and the blood working group is trying to sort out which assay is the best.
 

5150

Senior Member
Messages
360
Likes
281
Roma, You seem to have done a pretty good job of being a detective, and don't let anyone in here discourage you about your findings. I really don't understand why it's seemingly so difficult for research to find that this damn virus is transmitted via saliva; obviously including kissing, coughing/sneezing in close quarters, any saliva exchange. I presume if you had sex with the person, that you most likely also kissed her? Please don't over-think this situation. It will make you nuts as well as overstressed even more, and stress is really bad for us.

I fully expect to hear the demands for proof coming in here now, but just save it... I don't have to be a scientist to see people getting infected all around me and others who also have this damn virus. I have been saying it for years: this virus is transmitted in saliva! Maybe in other ways too(that would be further science-involved), but I don't need science to confirm something as simple as the saliva connection.

I really trust WPI but failure to know this mode of transmission is very alarming to me.
 

xrayspex

Senior Member
Messages
1,097
Likes
389
Location
u.s.a.
Roma I like your style, you are like 5 years ahead of the curve, I think you understand a lot about this, you know you could have had xmrv and the chick gave you something else that you just havent nailed down either and the combo is what made you sick. I'm in a bit of a cynical nihlistic mood tonight and sorry to say I started cracking up when i first started reading this thread because of your tirade of symptoms, I mean, i could relate, have had lots of neurological pain myself over the years so not laughing at anyone, this whole situation is just so absurd and that they would then concoct scenarios where CDC etc is funding psych studies about stress and doing CBT.....its downright kafkaesque.

anyhoo, I got tested thru VIP this summer and found out in Sept am xrmv+ and am glad to know but its not like there is anything at the university clinic and hospital here that would do jack for me.....my pc sent me a cbt/get study for fibromyalgia after I told him......so you can see why I am a bit jaded......however I think it will turn around and its going to be super interesting.....but its a little late for me......this came about for me when Depeche Mode was still a hot dance band......so ugh just pray they are quick about it and you won't lose your primetime like some of us.
 
Messages
92
Likes
107
Location
New York State
thank you for writing in stream of consciousness style. I have a VERY hard time reading long blogs. To me, yours was completely coherent.

anyway, I had some strange tonguey thingy stuff about 10 years ago when I think the disease was just starting in me. However, I can't blame the person I was sexually involved with. There are variables in my history which have made me ill, My Opinion.

thank you for sharing your story.
 
Messages
51
Likes
22
Location
Newark, NJ
Roma,

Your mention of the sites TheBody and POZ reminded me similarly that when I corresponded with them, the following happened:

(1) A doctor (named Wohl) said that he doesn't feel that HTLV should be tested for because no treatment exists for it - LOL. (TheBody site).

(2) Any symptoms (especially the ones that are classic for HTLV) that don't result in a positive test for HIV should be dismissed as stress related (both TheBody and POZ sites).

(3) The site moderators kept telling a teenage boy who had gone so far as to have a lymph node biopsy (yes, actual surgery) in an attempt to figure out what wrong with him that it was all in his head (POZ site).

I will also throw in the MedHelp site, where Doctor HHH declared that HTLV isn't a sexually transmitted disease (LOL). I have to direct my anger more at the doctors because they have a duty NOT to be ignorant about diseases, and less at the lay people who stupidly think that running a medical forum means that HIV is the only retrovirus out there. I ended up getting thrown off of both MedHelp and POZ because they can't handle the truth, which I feel is a compliment to me. I'm glad that you are keeping ahead of the 'experts', since if they were actually doing their job we wouldn't be in this situation in the first place.

Best wishes.
 

heapsreal

iherb 10% discount code OPA989,
Messages
9,256
Likes
8,833
Location
australia (brisbane)
Roma,

Your mention of the sites TheBody and POZ reminded me similarly that when I corresponded with them, the following happened:

(1) A doctor (named Wohl) said that he doesn't feel that HTLV should be tested for because no treatment exists for it - LOL. (TheBody site).

(2) Any symptoms (especially the ones that are classic for HTLV) that don't result in a positive test for HIV should be dismissed as stress related (both TheBody and POZ sites).

(3) The site moderators kept telling a teenage boy who had gone so far as to have a lymph node biopsy (yes, actual surgery) in an attempt to figure out what wrong with him that it was all in his head (POZ site).

I will also throw in the MedHelp site, where Doctor HHH declared that HTLV isn't a sexually transmitted disease (LOL). I have to direct my anger more at the doctors because they have a duty NOT to be ignorant about diseases, and less at the lay people who stupidly think that running a medical forum means that HIV is the only retrovirus out there. I ended up getting thrown off of both MedHelp and POZ because they can't handle the truth, which I feel is a compliment to me. I'm glad that you are keeping ahead of the 'experts', since if they were actually doing their job we wouldn't be in this situation in the first place.

Best wishes.
what are the symptoms of HTLV? i think the defreitus retro virus was suppose to be very similar to HTLV. there is a HTLV 1 and 2 as well isnt there??

cheers!!!
 
Messages
51
Likes
22
Location
Newark, NJ
Heaps,

HTLV symptoms generally mimic those of HIV - muscle and joint pain, fatigue, dermatitis, eye floaters, and can also include numbness in the limbs and back. And yes, there are two strains, named 1 & 2.

Best wishes.
HTLVhelp / Facebook
HTLVhelp / Twitter
HTLVhelp / Google+
HTLVhelp / YouTube
HTLVhelp / www
 
Messages
51
Likes
22
Location
Newark, NJ
Again this discussion reminded me of something about the people at Medhelp / TheBody sites:

While Dr. HHH and Dr. Bob and Teak all agree that three month HIV testing is conclusive, all of them refuse to discuss HTLV. And when Dr. Bob (who was HIV positive for 20 years and receiving the best medical care in the world) died suddenly last year (God bless his soul), he died from sepsis, which is a common death for native people with HTLV. I don't have a crystal ball, but between the number of doctors refusing to discuss HTLV, and the number of people dying of HTLV related causes, HTLV is a major problem that is not being dealt with at all.

Best wishes.

HTLVhelp / Facebook
HTLVhelp / Twitter
HTLVhelp / Google+
HTLVhelp / YouTube
HTLVhelp / www
 

ukxmrv

Senior Member
Messages
4,413
Likes
4,604
Location
London
Hi Tony,

I was tested for HTLV at a London hospital where there is a HTLV clinic and was negative. Had ME for over 25 years and this was the first time I was aware that a test was made.

Think you are right to highlight HTLV as a health concern that patients should tested for.

Are you aware of the early HTLV concerns in CFS? During the 80's Gallo looked at CFS patients of Dr Cheneys. Have a read of the book Oslers Web of you haven't done so already.
 
Messages
51
Likes
22
Location
Newark, NJ
Hi Uk,

Thank you very much for your support, and also thanks for the reference to Gallo & CFS patients, and Oslers Web, these are all news to me.

HTLVhelp / Facebook
HTLVhelp / Twitter
HTLVhelp / Google+
HTLVhelp / YouTube
HTLVhelp / www
 

xrayspex

Senior Member
Messages
1,097
Likes
389
Location
u.s.a.
what motivation do you think there is for HTLV to not be dealt with? I agree that it hasn't been, when I first learned about it a few years ago and did a pubmed search I was shocked to see the dearth of studies on it since 90.