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i think i got XMRV

Discussion in 'XMRV Testing, Treatment and Transmission' started by roma, Oct 26, 2010.

  1. roma

    roma

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    it all started back in May when i had sex with this girl and the condom broke and obviously i didn't notice until i finished, two weeks later i started noticing a lot of little pimples behind both my armpits, two more weeks go by i started spacing out and zoning out all the time but i thought i was just tired, two more weeks go by and i start having terrible nausea with really bad confusion and disorientation that lasted for about two months my lips were burning all the time, my spleen was enlarged, which made my tongue swell and burning sensation i started loosing weight and i got a really bad rash on my back which now i know are called dermatofibromas, felt needles sensations all over my body, the first thing in my mind was HIV i was freaking out so i started doing a bunch of tests tested negative for HIV and HTLV several tests of both of these several times at the 12 and 24 week all negative, in the mean time while waiting for the 24 week to approach most of my symptoms started to vanish except for the pain in the spleen, the swollen tongue with teethmarks on the side, really bad headaches, feelings of confusion, my eyes tingle a lot and my ears ring all the time and feel like they are gonna pop,sometimes i feel like im being stabbed in my head that makes my eyes watery, i feel my brain is swollen which makes feel as if i was high but not a good high more like if i was drunk and really confused, have neurological problems my arms and legs twitch sometimes for no reason, sometimes i feel hot and cold sensations in my head and i can feel i have something in there moving around, this led my Dr. to order an MRI which shows brain demyelination:((which happens with virus invasion) and all this time i have been telling my Dr. that is a virus that i got from this girl while all the evidence is compelling that it is in fact a virus, he says is either CFS(he didn't know is now linked to XMRV in a lot of cases) or MS, he says it cannot be a virus because all the blood work is normal which made really mad because that's stupid even people with HIV can have normal blood counts for several years after being infected.i told him, how can it be MS when six months ago before i was with this girl i was completely fine no problems at all, i mean it just doesn't make any sense the only possible logical explanation is that i have a virus plus when you have a swollen tongue is because your spleen is enlarged due to virus or bacteria, in the mean time while im waiting for my appointment with the infectious disease specialist i have been taking high doses of vitamins D,C,B12, COQ10, fish oil and some green tea pills and it seems to be helping a lot because for a while about three weeks ago i started feeling really tired i couldn't keep up at work but now with the COQ10 i feel fine and with energy, the only main problem right now is the brain i can't take the pain i don't feel confused too much anymore but the pain is just too severe, one more thing all that weight i lost initially is all back now in fact i am now heavier then i used to be before i was with this girl but it all seems to be going to the gut which i know is common with CFS due to thyroid problems..im almost sure that i have XMRV the girl tested for HIV as well she is negative but she told me she is always tired and she gets really bad headaches that sometimes make her faint and the doctors are trying to figure out why...I will be asking the Dr. to do a test for XMRV i don't care if it takes a month to get the results back from Reno i just need to know what i have so i can start doing something about it, i know so far 4 HIV drugs have been approved for XMRV and the good thing is that some are newer drugs that don't have really bad side effects, i only need something to stop virus replication in the brain for now because it seems like my body is doing a good job at keeping the virus in check but the brain is not..:Retro mad:
  2. Overstressed

    Overstressed Senior Member

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    I can tell you, you're not crazy. I experienced exactly the same thing, and still my Professor doesn't say, but thinks I'm nuts. I also had the teethmark on the lateral border of my tongue. Did I read correctly, you gained weigth, after a period losing weigth ?

    Welcome to club, my experience was more than 3 years ago, and still suffering. But I'm on Gc-Maf and it's helping me, though I think it will not cure me.

    Take care,
    OS.
  3. leaves

    leaves Senior Member

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    Hi Roma,
    Welcome to the forums !
    It is possible you have xmrv. I tested xmrv + through VIP labs. I probably have had it since birth and my mother has it probably too. It is scary if your health changes that much, when you are used to be healthy.
    At this moment there is no treatment for xmrv although some people are taking antiretrovirals, with mixed results. A lot of people also take other antivirals, immunemodulators and supplements that help them.
    It is good that you just recently got sick, then there is a higher chance to reverse the illness. If you can I think it would be worthwile to see a good cfs doc soon.
    I am sure you will find a lot of info on this forum, and a lot of people that can help you in this process.
    I wish you all the best.
    Hugs,
    Leaves
  4. camas

    camas Senior Member

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    Welcome, roma. What an ordeal you have been through since May. I sure hope the infectious disease specialist can sort things out for you.
  5. Daffodil

    Daffodil Senior Member

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    4 drugs for XMRV? which ones?
  6. illsince1977

    illsince1977 A shadow of my former self

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    If you find you have XMRV, I think you will find your proactive approach necessary in dealing with doctors, even IDs. Don't stop documenting everything - it will serve you and all of us well. Welcome to the forum and please keep us posted.
  7. roma

    roma

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    yeah i know im not crazy i know too well what symptoms i had and they ones i still have up to date including the headaches with feelings of having something in there moving around and the brain demyelination, i think it's gonna be XMRV i have tested for all stds out there and have all been negative the only ony left is XMRV i went to the county clinic today to ask them if they knew anything about XMRV and they all looked at me like i was crazy like i was making stuff up, even one of the girls suggested i take a vacation because she thinks is all in my head...but then one of them looked it up online and started reading out loud what XMRV is and they all looked surprised and told me they were gonna do some reserch about it to let people know there is another retrovirus out there..
  8. roma

    roma

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    as far as i know XMRV has now been linked to CFS, Fibro,autism and many others...how about MS am i the only one thinking the XMRV might be linked to MS as well, i mean it all makes sense, i know i got something infectious from this girl and the very very first thing my Dr suggested when he saw my MRI results was MS..i have been reading several blogs of people that have MS and i can tell a lot of them have many many symptoms that people with CFS have including a swollen tongue, the most logical explanation for a swollen tongue is having an enlarged spleen due to bacteria or a virus...by the way i have two new symptoms, lower back pain and pain and warmth feeling in my genitals are this symptoms suggestive of XMRV ...
  9. leaves

    leaves Senior Member

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    interesting, I have xmrv and one of my symptoms is a swollen tongue...
  10. Esther12

    Esther12 Senior Member

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    Hi Roma.

    We really don't know much about XMRV at the moment. It's possible you could catch it from sex when the condom breaks, but I don't think that this occurance on it's own is anything to be so worried about - it could well be that your health problems since are just a coincedence.

    Whatever's wrong, hopefully you'll find out for sure one way or the other.
  11. Marg

    Marg Senior Member

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    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
  12. Fejal

    Fejal *****

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    Do you have any history of exposure following your suspected viral infection to cats, fleas from cats or ticks? Viruses lower immunity so you may have picked up an undiagnosed bacterial parasite that is blocking your immune system. I've seen many reports from people here who had an initally viral infection then an arthropod exposure which coinfected them. Normally viruses are just triggers because they can't stick around (except HIV) because the body eventually mutates them to a nonvirulent form (the body has been killing retroviruses for millions of years). People are magnifying their importance. However the bacterial parasites block the immune response so you can't recover normally and the bacteria cause the rest of the symptoms. If your immune system is blocked then your body can't use the vitamin D to fight infections and you'll have depressed body temperature and chronic viral symptoms (enlarged lymph nodes, etc). When this is going on the more you suppress the immune system the better you feel but this just helps the parasite colonize you.
  13. Tia

    Tia Senior Member

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    But wait a minute.. I thought xmrv wasn't contaigious through bodilyfluids but just through blood, like HIV?

    Btw, I totally recognize being stared at as if one were crazy when one tells the medicalcare about a new retrovirus, noone seems to know about this yet. SO frustrating! The WPI has set to educate the medicalcare worldwide but it's probably gonna take some time..
  14. roma

    roma

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    no history of any exposure, the only exposure was this girl and by the way a retrovirus is for life retro means that ir replicates in your body it becomes part of your DNA once you have it in your body you can't get it rid of it, the three recognized human retroviruses are HIV, HTLV and XMRV...
  15. roma

    roma

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    HIV, HTLV and XMRV are all retroviruses that are sexually transmitted and by the way they are not contaigious but rather infectious, you can catch any of these three by having unprotected sex, it is true that we don't know much about XMRV yet but we do know a lot about HIV and HTLV and they are in the same family same rules for all three of them, same ways of transmission...
  16. Fejal

    Fejal *****

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    That's not true. The body mutates and eliminates XMRV if the immune system is functioning, it just takes time.

    (Groom, H. Susceptibility of xenotropic murine leukemia virus-related virus (XMRV) to retroviral restriction factors. PNAS. (107):11. March 16, 2010. www.pnas.org/cgi/doi/10.1073/pnas.0913650107)

    The trick is to reverse the immune blocking and provide the raw material to ensure a vigorous immune response.
  17. wdb

    wdb Admin

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    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
  18. shannah

    shannah Senior Member

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    How can the body eliminate it if it is part of your DNA?

    My understanding is that it can go into 'latency' or 'remission' type phases but that it still is an integral part of the body.

    Can someone clarify?
  19. roma

    roma

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    Did you know that in the very first study they did about CFS linked to XMRV in las Vegas and after people learned that it was a virus most people admitted to have had unprotected sex at some point and shorlty after they started to get sick, thats why many many people that have tested positive for XMRV say they thought they had HIV even if the chances of getting infected are very slim, there's plenty of people that got infected after only one time of unprotected sex it all depends on how much virus the person is shedding at the time of having sex, if you have a really weak immunse system it means that you are sheding more virus and you viral load is high if you will, which means this raises a lot the posibilities of infecting somebody else..
  20. roma

    roma

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    Wrong your body might be able to stop virus replication but you can't get rid of it it becomes part of your DNA some people might be able to control it very well it's in a latent mode, but is there, think of HIV, drugs stop HIV replication but it does not get rid of the virus, now a days HIV+ people have undetected viral loads because of the drugs but the virus is hiding in these so called reservoirs and as soon as people stop taking drugs they get very sick again, here is this link scroll down to the bottom where you see the writing in RED...http://www.vipdx.com/faqs/

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