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      Sure hope this pans out. 
    • Voyager2
      Don't forget there are two promising vaccines on the prophylactic front (but only pre-clinical): The Trivalent vaccine worked well on guinea pigs:  https://pubmed.ncbi.nlm.nih.gov/32347775/ The Einstein (Xvax) vaccine also has a ways to go: https://x-vax.com/ The fact HSV529 is in yet another clinical trial is good news for herpsters. 
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      thank you for the info. I am uncircumcised. I applied some clotrimazole cream during the last outbreak I noticed, which seem to do the trick (around a month ago). But now, there new dots are appearing at a different location on the glans. Wasnt sure if balanitis can come back so soon or if it could be something else. 
    • Josse
      Looks like mild balanitis. If you are uncircumcised then thats normal every now and then due to accumulation of yeast and the irritation of the foreskin
    • MikeHerp
      I think the simple reason is that this is a fund raiser that was started by our community rather than by Fred Hutch.  Or rather, FHC started it in response to our request.   I still think they should somehow feature it in their pages.  But anyway, that's just how they do it. Keep in mind that FHC's main focus is curing cancer.  It's a cancer research institute.  They might feel that putting stuff on their website that isn't directly related to cancer might give people the impression, especially cancer cure donors (who are by far the main donors to FHC), that FHC is losing its focus. So we have to work within these limits.   However, I do draw strength from the fact that FHC has tried to help us with the fund raiser.  Among others: 1.  When the new research paper is released, FHC has gotten an agreement with a prominent sexual health blogger, to promote the research and the fund raiser. 2.  There is another potential promotion in the works that might get back on track if the US is able to get the coronavirus under control. So FHC has actively helped us to promote the fund raiser.
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Neuro_loss

Neurological damage associated with HSV2

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Neuro_loss

Hello,

Looking for a little advice, thanks in advance to anyone who can provide any. Sorry long post but it's an unusual case.....

Although a new member here I am, unfortunately, a veteran HSV2 sufferer, contracted over 30 years ago. Male, 55yo, hetero, married. 

It has always been an irritant, but liveable, or so I thought, as although outbreaks are frequent the lesions are rarely anywhere that cause a big problem.

The virus entered via the genitals, as for most, but after the primary outbreak the lesions are mostly at the base of the spine or behind my ear, occasionally on the chin but almost never on the classic sites of lips or genitals. So it hasn't been a big headache for my sex life over the years, which is a big plus, and I've never passed it to anyone despite having quite a few partners, for which I am very grateful.

However, for the last 2-3 years I've been suffering slowly increasing neurological symptoms, starting with deafness and Menieres-type symptoms in the right ear, and recently pyloric sphincter reflux issues,  scary moments when I almost-vomit while falling asleep, and increasingly poor digestion. My intellect and concentration is not what it was, either. Frequent night sweats and low fevers.

After tests for MS and all sorts of other things and noticing that my HSV2 antibodies level is off the scale (I stupidly hadn't informed him about HSV2 as I thought it irrelevant) on an almost permanent basis, my doctor thinks the immune system is causing neurological damage due to being activated permanently against the HSV2 (uselessly I might add) - so similar to MS in a way. He says it's rare, but it happens.

Soon I will have the first appointment with the neurologist to discuss this, but at the moment Covid19 is making getting an appointment difficult.

Obviously I need to change my life to live it in a way that will calm the HSV2, as it's not going anywhere.  Reduced sugar, reduced alcohol, reduced high-arginine foods (I love Brazil nuts 😞 ) seems the way to go. Fasting works quite well but difficult when at home (I work away sometimes but not atm due to Covid)

 

Right - that advice....

I want to start with some dietary supplements to help. Lysine about 3g and Zinc 25mg looks a good place to start. Any other "obvious" ones?  What about the dietary change, I like cream as well, does that have to go too? 😞

Any other obvious things I should be considering? 

 

 

 

 

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Neuro_loss
43 minutes ago, TCBH said:

Have you used any of the antivirals?  

No, not yet. I'm expecting the neurologist to prescribe them. My understanding was that they're not that great and sometimes have side-effects. Not true?

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TCBH

Depends on your chemistry.  Most people don't have any problems but you can have side effects.  Like any drug, you have to monitor your body's reactions.  If your problems are related to HSV than I would definitely give it a try. I know for me if I feel issues coming on, I take Valacyclovir and it seems to halt the progression.  Even if the doctors aren't able to definitely tell you your health problems are HSV related, I don't think it would hurt to try.  Unfortunately HSV hasn't really been seen as an instigator in many health issues but from my experience it is a cofactor or an aggravator.  Sometimes when I take the Valacyclovir other issues (psoriasis for me) gets better too.  Psoriasis is a skin condition so it kind of makes sense.  For you, the brain, they have found that HSV can make its way through the blood-brain barrier so again, maybe not the cause of your problems but an aggravator. For example, many studies are being done right now on the relation between HSV and Alzheimer's.  FYI,  I'm not in the medical field or a scientist, just a person trying to understand this virus and its effect on my body.  Please take what I say with a grain of salt.

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TCBH
Posted (edited)

Let me add Acyclovir has been around for a long, long time - 1980s  Also, there is Valacyclovir and Famciclovir which are newer. These both turn into acyclovir but were created because of better efficacy.  

None of these are the best but they can help.  As far as new drugs, Pritelivir is in the works. We're all hoping it gets approved in the next couple of years.  It uses a different mechanism to control the virus--actually stopping it before it starts. It too is not a 100% but shows to be better than Acyclovir.  Some are thinking a cocktail of the two could be pretty effective.

Edited by TCBH

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Neuro_loss
2 minutes ago, TCBH said:

Depends on your chemistry.  Most people don't have any problems but you can have side effects.  Like any drug, you have to monitor your body's reactions.  If your problems are related to HSV than I would definitely give it a try. I know for me if I feel issues coming on, I take Valacyclovir and it seems to halt the progression.  Even if the doctors aren't able to definitely tell you your health problems are HSV related, I don't think it would hurt to try.  Unfortunately HSV hasn't really been seen as an instigator in many health issues but from my experience it is a cofactor or an aggravator.  Sometimes when I take the Valacyclovir other issues (psoriasis for me) gets better too.  Psoriasis is a skin condition so it kind of makes sense.  For you, the brain, they have found that HSV can make its way through the blood-brain barrier so again, maybe not the cause of your problems but an aggravator. For example, many studies are being done right now on the relation between HSV and Alzheimer's.  FYI,  I'm not in the medical field or a scientist, just a person trying to understand this virus and its effect on my body.  Please take what I say with a grain of salt.

Interesting, thanks. Kudos to my doctor for the diagnosis then if it's not widely accepted. (I think he's correct as nothing else makes any sense so far and the other neurological diseases have all come up negative) He thought Lymes at first as I'm a frequent mountain walker in tick-infested areas, but that came up negative twice.  

 

2 minutes ago, TCBH said:

Let me add Acyclovir has been around for a long, long time - 1980s  Also, there is Valacyclovir and Famciclovir which are newer. These both turn into acyclovir but were created because of better efficacy.  

 

Yeah I remember acyclovir being not particularly effective for me way back in the 80s. I more or less gave up on all treatments, official or otherwise after a while as in those days it was an irritant but wasn't affecting me in any ways that I couldn't deal with, sex life was more or less unaffected. Body is paying the price now for leaving it to run free. 

 

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TCBH

Yes, Kudos to your doctor.  Most docs don't even give HSV a 2nd thought, let alone check and see if it's part of the problem in other health issues.  I wish you luck on figuring out what's causing your issues, be able to treat it and get healthy.  Yeah, don't discount HSV, it's a sneaky virus. 😉

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WSX
5 hours ago, Neuro_loss said:

However, for the last 2-3 years I've been suffering slowly increasing neurological symptoms, starting with deafness and Menieres-type symptoms in the right ear, My intellect and concentration is not what it was, either. Frequent night sweats and low fevers.

I can relate to this. I've had similar problems with my ear and difficulty concentrating. What symptoms have you noticed in your ear?

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Neuro_loss
1 hour ago, WSX said:

I can relate to this. I've had similar problems with my ear and difficulty concentrating. What symptoms have you noticed in your ear?

Menieres-type symptoms. sensation of fullness, deafness, dizziness (that hasn't recurred since January now)

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WSX
1 hour ago, Neuro_loss said:

Menieres-type symptoms. sensation of fullness, deafness, dizziness (that hasn't recurred since January now)

Is it triggered by anything? Do you feel all the time like you can't hear? My ENT says everything looks normal, but it's definitely not.

The dizziness comes and goes for me. 

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Ohsotired
3 hours ago, WSX said:

Is it triggered by anything? Do you feel all the time like you can't hear? My ENT says everything looks normal, but it's definitely not.

The dizziness comes and goes for me. 

I have the same troubles. Everyday, I deal with a bout of dizziness. My ears ache on some days. I also have the ear fullness; sometimes it feels like water is in my ears. I have cloudy & blurred vision. I’m over it. 

None of these things occurred before herpes. 
 

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WilsoInAus

Hey @Neuro_loss and welcome to the website. Just a few thoughts for you.

Note that your HSV-2 infection is most probably restricted in its location to your genital area. Your lesions such as behind the ear are probably not related to herpes at all, but might be HSV-1 if they are caused by HSV 1/2.

Meniere's is not caused by herpes. The only known association is an indirect autoimmune issue that can only be linked to maybe 1/3 of Meniere's cases.

There are no known foods that impact herpes replication. Lysine in particular does nothing much at all for the body. The best advice as above is antivirals for HSV-2 symptoms, but if they do not help, then the chances skyrocket that there are other causes at play, especially genetic for example.

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WSX
Posted (edited)
57 minutes ago, WilsoInAus said:

Hey @Neuro_loss and welcome to the website. Just a few thoughts for you.

Note that your HSV-2 infection is most probably restricted in its location to your genital area. Your lesions such as behind the ear are probably not related to herpes at all, but might be HSV-1 if they are caused by HSV 1/2.

Meniere's is not caused by herpes. The only known association is an indirect autoimmune issue that can only be linked to maybe 1/3 of Meniere's cases.

There are no known foods that impact herpes replication. Lysine in particular does nothing much at all for the body. The best advice as above is antivirals for HSV-2 symptoms, but if they do not help, then the chances skyrocket that there are other causes at play, especially genetic for example.

The science says that you are wrong. 

Look at the amount of supporting evidence that ties Meniere's with herpes. The virus does not cause all cases, but the evidence is clear that herpes plays a big part.

1/3 of cases can be linked, as you say; that's a huge number of people living with herpes who also develop Meniere's.

https://pdfs.semanticscholar.org/9c70/29cfceb5bb68e021a7617190954b2506686d.pdf

These forty studies were compiled from PubMed (http://www.ncbi.nlm.nih.gov/pubmed), a NIH database that contains a listing of peer-reviewed scientific and medical studies. These are the relevant studies found when searching for "virus" and "meniere" in papers that include an abstract. Of these forty papers, thirty supported a viral etiology for Meniere's, four were equivocal, and six did not support a viral cause.

Edited by WSX

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WilsoInAus

@WSX not one single paper has found proof of a viral cause.

There is only a correlative link and this appears no more than chance.

Even if you choose to believe a virus might be related, there are hundreds of viruses or combinations it may be.

A herpes website isn’t an excuse to engage in bro science and state that links are causes.

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WSX
38 minutes ago, WilsoInAus said:

@WSX not one single paper has found proof of a viral cause.

There is only a correlative link and this appears no more than chance.

Even if you choose to believe a virus might be related, there are hundreds of viruses or combinations it may be.

A herpes website isn’t an excuse to engage in bro science and state that links are causes.

I disagree with you.

In my experience and time understanding this virus, there are far too many coincidences and sudden onset of bizarre symptoms caused by the arrival of herpes.

I will believe the OP, scientific studies, and doctors over you.

 

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WilsoInAus
10 minutes ago, WSX said:

I disagree with you.

In my experience and time understanding this virus, there are far too many coincidences and sudden onset of bizarre symptoms caused by the arrival of herpes.

I will believe the OP, scientific studies, and doctors over you.

 

You can choose to believe what you like and disagree with what you choose. Your beliefs do not create facts against which others are wrong. I am of course scientifically Correct.

Just as everyone has a right to believe what they wish based on objective facts and not beliefs or ‘coincidences’.

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Neuro_loss
2 hours ago, WilsoInAus said:

Hey @Neuro_loss and welcome to the website. Just a few thoughts for you.

Note that your HSV-2 infection is most probably restricted in its location to your genital area. Your lesions such as behind the ear are probably not related to herpes at all, but might be HSV-1 if they are caused by HSV 1/2.

Meniere's is not caused by herpes. The only known association is an indirect autoimmune issue that can only be linked to maybe 1/3 of Meniere's cases.

There are no known foods that impact herpes replication. Lysine in particular does nothing much at all for the body. The best advice as above is antivirals for HSV-2 symptoms, but if they do not help, then the chances skyrocket that there are other causes at play, especially genetic for example.

For the part in bold, the lesions near my ears and at the base of the spine were swabbed in the 80s, they're HSV2. So it obviously moves around the body for me. 

Please note I said I have Menieres-type symptoms in the ear, not that I have Menieres. The doctor's diagnosis is indeed that the HSV2 is overstimulating my immune system (according to him he'd never seen a higher count in the blood test, I forget the number) causing the various neurological symptoms. 

What do you think is the reason that so many people with herpes find Lysine and Zinc helpful? Placebo for all of them?  Could be. I don't remember Lysine being that helpful back in the 80s, it's true. But neither was acyclovir.

For me, I suspect sugar and alcohol are the main triggers, this does not please me though so I'd like to find something else that helps.

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WSX
46 minutes ago, Neuro_loss said:

For the part in bold, the lesions near my ears and at the base of the spine were swabbed in the 80s, they're HSV2. So it obviously moves around the body for me. 

@WilsoInAus, are you still "scientifically correct" 😄

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WilsoInAus
4 hours ago, Neuro_loss said:

For the part in bold, the lesions near my ears and at the base of the spine were swabbed in the 80s, they're HSV2. So it obviously moves around the body for me. 

Please note I said I have Menieres-type symptoms in the ear, not that I have Menieres. The doctor's diagnosis is indeed that the HSV2 is overstimulating my immune system (according to him he'd never seen a higher count in the blood test, I forget the number) causing the various neurological symptoms. 

What do you think is the reason that so many people with herpes find Lysine and Zinc helpful? Placebo for all of them?  Could be. I don't remember Lysine being that helpful back in the 80s, it's true. But neither was acyclovir.

For me, I suspect sugar and alcohol are the main triggers, this does not please me though so I'd like to find something else that helps.

Thanks @Neuro_loss for the additional comments.

I note that it is unlikely your swabs from the 1980s would have been typed, just assumed. Regardless of what types they are, the virus does not move ganglions from inside the body. The virus enters an infection site through the skin and infections the relevant ganglion. Sometimes people are infected at the same or similar time with the same type in two locations, however the virus has penetrated in the two locations. Note that the base of the spine is a branch of the genital ganglion.

There's a lot of guesswork going on here by your doctor let's face it. You can only really 'link' an immune disorder to your neurological issues. However, it is a candidate. Other very hard to detect yet common causes include enlarged blood vessels placing pressure on nerves.

There's no such thing really as a high IgG count. Further, IgG is only one of over 80 immune system elements against HSV-2. Hence looking at simply one IgG antibody (and this is not even a relatively powerful one, just a useful one to test for) doesn't tell you much about the other immune system elements. In the end you can never work out whether it is a virus you have or even viruses you do not have that causes an autoimmune issue.

With lysine, yes its placebo. Blind trials show no difference. Zinc is wonderful for skin health hence it wouldn't be too surprising for some people with a zinc deficiency may find their skin health improved with a supplement that may reduce out break frequency.

Stress on your body (mental or physical) are the usual triggers. It won't be the sugar or alcohol directly but the correlates with why you are having excess sugar or alcohol and the health impact this has.

 

3 hours ago, WSX said:

@WilsoInAus, are you still "scientifically correct" 😄

Yes totally, as you can see this is a very beneficial and useful discussion. Hope you think so too.

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Neuro_loss
Posted (edited)
6 hours ago, WilsoInAus said:

Thanks @Neuro_loss for the additional comments.

I note that it is unlikely your swabs from the 1980s would have been typed, just assumed. Regardless of what types they are, the virus does not move ganglions from inside the body. The virus enters an infection site through the skin and infections the relevant ganglion. Sometimes people are infected at the same or similar time with the same type in two locations, however the virus has penetrated in the two locations. Note that the base of the spine is a branch of the genital ganglion.

There's a lot of guesswork going on here by your doctor let's face it. You can only really 'link' an immune disorder to your neurological issues. However, it is a candidate. Other very hard to detect yet common causes include enlarged blood vessels placing pressure on nerves.

There's no such thing really as a high IgG count. Further, IgG is only one of over 80 immune system elements against HSV-2. Hence looking at simply one IgG antibody (and this is not even a relatively powerful one, just a useful one to test for) doesn't tell you much about the other immune system elements. In the end you can never work out whether it is a virus you have or even viruses you do not have that causes an autoimmune issue.

With lysine, yes its placebo. Blind trials show no difference. Zinc is wonderful for skin health hence it wouldn't be too surprising for some people with a zinc deficiency may find their skin health improved with a supplement that may reduce out break frequency.

Stress on your body (mental or physical) are the usual triggers. It won't be the sugar or alcohol directly but the correlates with why you are having excess sugar or alcohol and the health impact this has.

 

Yes totally, as you can see this is a very beneficial and useful discussion. Hope you think so too.

This is how it happened - the late 1980s doctor expressed surprise about the lesions appearing at the base of the spine and behind my ears (about 1-2 years after the original outbreak), and swabbed them with the expressed intent of checking they were HSV2, then two weeks later he told me they were. Now I wasn't present in the laboratory when they tested the swabs, so I can't say more, but assuming he or the lab weren't lying, it's HSV2.   

Regarding the supposed inability of the virus to move and reinfect within the body, I've had lesions in so many different places now, and only once in 30 years in the original genital site, so that doesn't quite fit my case.  Could I have reinfected myself in all those places? I doubt it. Where is the root of the facial nerves ganglion - behind the ears? I've never had a mouth/lip lesion, only chin and once cheek.

Sure, the doctor is guessing a bit, but it's the only hypothesis that currently fits the situation. He says it's surprising and rare, but he checked and mine is definitely not the only case of herpes having neurological effects out there, he found similar cases. (He's French so maybe not the same databases as the anglophone world). He's been pretty thorough, I've had IRMs to check for MS, every blood test he could think of.

Who knows, maybe the neurologist won't agree with him, when I eventually get to see one.
 

Edit :- Oops IRM= MRI in English.

 

 

Edited by Neuro_loss

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Kurdt01

Youre issues sound a little more serious than what i've experienced neurologically which is constant burning ranging from 'barely noticeable but always there' to 'almost bed-bed-riddening' at it's worse...as far as what i've experienced a couple docs have confirmed for me that it is indeed herpes, but it's probably not 'damage' but just an expression of the virus...they don't even know how it relates to shedding/activity.... i.e. burning doesn't necessarily mean shedding....

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Neuro_loss
40 minutes ago, Kurdt01 said:

Youre issues sound a little more serious than what i've experienced neurologically which is constant burning ranging from 'barely noticeable but always there' to 'almost bed-bed-riddening' at it's worse...as far as what i've experienced a couple docs have confirmed for me that it is indeed herpes, but it's probably not 'damage' but just an expression of the virus...they don't even know how it relates to shedding/activity.... i.e. burning doesn't necessarily mean shedding....

I clearly don't shed much, as I've never passed it to anyone. Damage is my word, not really the docs, so it might be a bad description. It does seem to improve quite a bit if I stay off sugar and alcohol, but I don't regain all the hearing in the ear, so there must be some damage.

I have a neurologist appointment in June now, will see what he says.

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shadowgirl88
7 hours ago, Neuro_loss said:

I clearly don't shed much, as I've never passed it to anyone. Damage is my word, not really the docs, so it might be a bad description. It does seem to improve quite a bit if I stay off sugar and alcohol, but I don't regain all the hearing in the ear, so there must be some damage.

I have a neurologist appointment in June now, will see what he says.

Hey Nero, 

there has been some science backing the use of L-Lysine and Vitamin E for herpes. I just started taking 1000mg of L-Lysine a day. And you know what? If it doesn’t help the herpes then it can’t hurt either. It’s an essential amino acid and your body will do nothing but love you for it!  As far as the diet goes, no nuts or arginine rich foods, or a lot of turkey, sugars or alcohol. I have a lot of Neurological symptoms too. I was diagnosed with a B12 deficiency back in 2013. I literally was in a store one day and forgot my own name!!!!  So maybe mention that to your doctor and have him check your B12 levels. 

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Neuro_loss
3 hours ago, shadowgirl88 said:

Hey Nero, 

there has been some science backing the use of L-Lysine and Vitamin E for herpes. I just started taking 1000mg of L-Lysine a day. And you know what? If it doesn’t help the herpes then it can’t hurt either. It’s an essential amino acid and your body will do nothing but love you for it!  As far as the diet goes, no nuts or arginine rich foods, or a lot of turkey, sugars or alcohol. I have a lot of Neurological symptoms too. I was diagnosed with a B12 deficiency back in 2013. I literally was in a store one day and forgot my own name!!!!  So maybe mention that to your doctor and have him check your B12 levels. 

Hi, thanks - I'd be surprised if I was deficient in any vitamins tbh because my diet is pretty good, and I eat quite a lot of B12-rich foods. That said, if I remove all nuts I'll probably have to take some supplements to counter what is lost. I eat turkey once a year at Christmas :-) Removing sugar and alcohol is going to be a struggle though.....

I haven't forgotten my own name yet, but I've forgotten a lot of other people's names!

 

 

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hopeing

I sometimes get a blocked inner ear, never used to get it before, can't say for sure but I wouldn't be surprised if its a side effect of the virus being in the ganglion near the ear. 

I don't think my hearing is actually damaged, just the fluid on the ear makes the hearing bad while its there. I also get hayfever so it may just be related to that, flushing my sinus with salt water spray tends to help.

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