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Seeker1960

HSV and CNS issues.

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    @true_blue, @LatentBloomer, @Cas9, @Mackie82, @diablo604 @fallin and others.

    Lets continue the discussion regarding HSV infection and its affect on the CNS.

    It seems most who have neuropathy also have had testing issues and atypical presentation. This is something thatbI have observed here over and over and over. 

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    You know I have a lot to say about this, Seeker. I'm running errands right now but I'm looking forward to the discussion. There are too many of us for this to be coincidental. 

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    Only way to repair nerves /to reach hsv in neurons is to get supplements which crosses blood brain barrier , like omega 3,vitamin E, D, axantamine, curcumin etc

    I have started consuming high doses of fish oil like 4gm from today , let's hope it regenerates the damaged nerves . 

    I saw one patent where canabonoids protects the nerve cells , so cannabis is another option . 

    I'm having non stop pain in scrotum and surroundings , no typical genital lesions , headaches every odd hours

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    3 minutes ago, Puni said:

    Only way to repair nerves /to reach hsv in neurons is to get supplements which crosses blood brain barrier , like omega 3,vitamin E, D, axantamine, curcumin etc

    I have started consuming high doses of fish oil like 4gm from today , let's hope it regenerates the damaged nerves . 

    I saw one patent where canabonoids protects the nerve cells , so cannabis is another option . 

    I'm having non stop pain in scrotum and surroundings , no typical genital lesions , headaches every odd hours

    I am so glad I found this community today. I thought I was losing my mind and the doctors not taking me seriously. I have the exact 'non stop pain in scrotum and surroundings , no typical genital lesions' It really does feel like body is being taken over some times.

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    10 minutes ago, mikejohnson said:

    I am so glad I found this community today. I thought I was losing my mind and the doctors not taking me seriously. I have the exact 'non stop pain in scrotum and surroundings , no typical genital lesions' It really does feel like body is being taken over some times.

    Yep me too , it's never ending , if i apply anything on scrotum  that soothes it , immediately i get head pressure , i think hsv has messed some nerve wiring and pain signals are firing non stop . I'm very unlucky even by have GHSV1

    I don't get any lesions like in Internet . It's like this for already 5 months . 

    I'm even thinking of cutting off my scrotum . 

    Totally 5 doctors have examined my scrotum , they can find anything wrong , no swelling no lesions . 

    Edited by Puni

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    1 minute ago, Puni said:

    Yep me too , it's never ending , if i apply anything on scrotum  that soothes it , immediately i get head pressure , i think hsv has messed some nerve wiring and pain signals are firing non stop . I'm very unlucky even by have GHSV1

    I don't get any lesions like in Internet . It's like this for already 5 months . 

    I'm even thinking of cutting off my scrotum . 

    Oh don't worry about that, I have thought about doing that many times just to be over and done with it.

    Even though I have been like this for almost 2 and a half years, I am very new to all this. Armed with the information within this forum I will be back at the doctors on Monday.

    My issues is yes I may finally get diagnosed with HSV type 1 or 2. I am already on meds (from an online doctor) and I am 11 months deep on them.

    I feel like I cannot see the light at the end of tunnel.  

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    34 minutes ago, mikejohnson said:

    I am so glad I found this community today. I thought I was losing my mind and the doctors not taking me seriously. I have the exact 'non stop pain in scrotum and surroundings , no typical genital lesions' It really does feel like body is being taken over some times.

    Welcome Mike, I am sorry that you are a member of this club that nobody wanted to join. Hopefully, we can support eachother and that we can find treatments that help reduce these symptoms. I have been a member of the H club going on two years now.

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    Would it be worth writing to the Mayo Clinic or Duke? If we all wrote individually?

    I'm dragging around a 300lb body again today. I'm so exhausted. Could only make it to the bank. 

    Edited by LatentBloomer

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    Hey guys, I am having weird moving burning pain through out my body. I feel burning pain in a small area on my left thigh for a few seconds or minutes, which quickly moves to my right arm, or my left knee. I feel burning on my gace too at times, for a few seconds. There are sometimes 2-3 pinches on my left buttock which then vanishes. I am also having non-stop Tinnitus which is most likely triggered by HSV. Does this sound familiar ? 

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    @LatentBloomer: I will be very interested in joining. I am not getting any answers from GPs or specialists. 

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    12 minutes ago, LatentBloomer said:

    Would it be worth writing to the Mayo Clinic or Duke? If we all wrote individually?

    I'm dragging around a 300lb body again today. I'm so exhausted. Could only make it to the bank. 

    I'm interested.

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    3 minutes ago, true_blue said:

    I'm interested.

    We need enough people for this to have any impact. 

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     I think we all need to keep a journal of experiments we are trying and report back what is working and what is not working. It can give other people things to try out and see if it might ease the pain somewhat.

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    2 hours ago, caliman2345 said:

    @LatentBloomer: I will be very interested in joining. I am not getting any answers from GPs or specialists. 

    They have no answers for us. So the only thing they can say this is not HSV related. BTW all of us not getting visible sores / ob’s whatsoever. Then either we have deferent strains of HSV or most likely our immune response because my giver was getting ob’s. I have seen doctors several times and in deferent counties and the answer was this is not HSV related and all in your head and one doctor diagnosed me with fibromyalgia. Anyways let’s stick together and anyone find anything help we will share it. Puni my scortum is fine no pain but the Penis is 24/7 in pain I was thinking to cut it off also but I have also a lot of pain in deferent areas so I have to cut 70% of my body. I hope all of us get well soon. Thanks Seeeker for this thread you are a great man and always helpful. Regards 

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    Are we all in agreement that we each have weak immune systems? Or is it something else like our bodies are perfectly adapted to be taken advantage of by this horrible virus?

    The reason I say this is because I see how some guys online go to brothels and have sex with prostitutes and they even french kiss and get unprotected oral sex from them. I'm sure they have herpes but it seems like it doesn't stop them at all.

    Speaking as a man I don't care if I ever have sex again my hand is good enough. I just want my health back. :(

    So if we can't eradicate the virus is the key to build a super immunity against the virus to keep it asleep?

    What are your thoughts?

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    5 hours ago, true_blue said:

    Are we all in agreement that we each have weak immune systems? Or is it something else like our bodies are perfectly adapted to be taken advantage of by this horrible virus?

    The reason I say this is because I see how some guys online go to brothels and have sex with prostitutes and they even french kiss and get unprotected oral sex from them. I'm sure they have herpes but it seems like it doesn't stop them at all.

    Speaking as a man I don't care if I ever have sex again my hand is good enough. I just want my health back. :(

    So if we can't eradicate the virus is the key to build a super immunity against the virus to keep it asleep?

    What are your thoughts?

    May be our immunity is fine , but the way our neurons are responding is different or the strain of the virus is neuroinvasive. 

    What ever good antibodies you produce cannot enter the virus in neurons ,  so this neuropathic strain is developing a new gene expression or new proteins to cause pain. 

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    Most of us seem to have problems developing type specific antibodies. I'm not sure what that means or why it's happening.

     

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    2 minutes ago, Puni said:

    What ever good antibodies you produce cannot enter the virus in neurons ,  so this neuropathic strain is developing a new gene expression or new proteins to cause pain.

    I don't believe anyone's antibodies can enter the neurons. If that were the case, our bodies would've killed the latent virus already. I think that's what makes this virus so successful- our immune systems can't reach the latent virus. Our antibodies would damage our neurons. 

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    I have had very weird testing as well..i initially went for a combined test and it showed a high igg of 28.8..then i went for type specific which showed igg of 1.9 hsv1. For both test positive is greater than 1.1. I took antivirals for some 3 months but not much improvement and many nerve issues..now i have stopped antivirals n waiting 12 weeks to go for westernblot

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    1 hour ago, selu said:

    I have had very weird testing as well..i initially went for a combined test and it showed a high igg of 28.8..then i went for type specific which showed igg of 1.9 hsv1. For both test positive is greater than 1.1. I took antivirals for some 3 months but not much improvement and many nerve issues..now i have stopped antivirals n waiting 12 weeks to go for westernblot

    It is recommended to be off antivirals for a few months before testing. Some where like 3 to 6 months to allow for antibodies to develop. At least that is what some experts say. 

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    Seeker the test was done before taking antivirals..now am off them and waiting 3 months to do westernblot

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    Where do you guys get nerve pain? I am starting to feel pain in my lower back, hamstrings and calves.

     

     

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    Right arm, buttocks, legs...

    Are you taking medication?

    Edited by rgreen

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    Butt lower back and arms..does anyone get like small red pimples on their bodies..i just got two near my neck and it was really painful..can hsv move all over ur body?

    Edited by selu

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