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    • WilsoInAus
      Just because you have HSV-1 doesn't mean everything that happens on your lips is related to HSV. It does seem like a dermatologist would be a good move if your doctor is not thinking broadly enough.
    • whereismyanswer
      Yes, taken the blood test and came back positive for HSV1.  I wish it was angular cheilitis. I'm going to look into other doctors for treatment options.  
    • Just a human being
      A lot of people don’t understand me nor the importance of the emerging evidence. They think I’m promoting a product or here for financial gain! They mistake a complex social environment with science failing to realise it’s an open poll with many factors affecting the outcomes! They mistake anecdotal trying as the way forward over the importance of the emerging evidence to shed more light on the mechanisms of how clearance could be achieved. That it opens up the further discourse for integrative medicine and related sectors in healthcare. That it means people will no longer have to run around for decades trying to find their answers! Our doctors and scientists are persecuted and ridiculed and too scared to speak the truth! Unless we build a groundswell movement behind it things won’t change. Instead people seek to destroy what they don’t understand! It’s been a tough, frustrating year arguing and advocating for the recognition of integrative medicine. Often with those HSV infected trying to beat it down THE MOST! I guess in any troubled times we have thoughts to turn back to to give us strength. Mine is Lady GaGa. Bullied at school and rejected many many times in her early career Lady GaGa is one of the wealthiest and most influential pop stars. Arguing for her brand of pop music she knew it was the next big thing but getting people to listen was harder.  Lady GaGa often gives inspirational speeches of success after much rejection: “It’s not about winning,” Gaga continued. “What it is about is not giving up. If you have a dream, fight for it. If there is a discipline, or passion, it’s not how many times you get rejected or you fall down or are beaten up. It’s about how many times you stand up and are brave and keep on going.” At the start of the year we looked into the astrology of the year. This is the year of Rahu. Rahu brings change with shocks to break down barriers and taboos. I have to say I groaned at little damn shocks and shakes haven’t I had enough in my life! We have certainly had many! I will not stop standing up for the truth and recognition of integrative medicine! Unity in the community is important. Stop destroying recognition of your treatment. Educate yourself on the complex social environment and start thinking like a scientist! Again I think of Lady GaGa.    START ROARING FOR CHANGE!             
    • WilsoInAus
      Hey @whereismyanswer my only comment for now is that are you sure these are cold sores and not another condition such as angular cheilitis? Valtrex is effective against oral cold sores in 95%+ of cases so there's a chance that something else is contributing at least.
    • WilsoInAus
      Hey @Hjkl33 and welcome to the community. You are right to dismiss the IgM results, they have no real value in an adult for all the reasons I'm sure you have read about. Your positive test is a very low positive and hence very likely to be false. This combined with what I suspect has been no outbreaks makes a false positive highly likely. Another IgG test will help your understanding, just insist this is what you want.
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floydmonk

Post outbreak nerve pain - gHSV1

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floydmonk

I was diagnosed with genital type 1 in June and I am still learning about this condition. My last outbreak was the first one, but the pain never went away on the left side, a very sensitive area. It is a tingling/stinging pain that mostly never goes away. It can be so distracting that I am not able to think/work. Within the past two weeks it has worsened, I even got some antivirals but they did not help much, perhaps placebo. With no visible lesions I figured it would be safe to try a cream to treat the nerves. I tried a CBD product with some success, but after having an “icy-hot” experience from some other ingredients, I headed back to the store. I found a product called “Shingles Rescue” it treats “Post-herpetic pain” from Herpes Zoster, which is actually I think a meaner form of herpes. I have not tried it yet, but will shortly when the CBD stops working to test effectiveness. I will post back with the results. The reviews were pretty good. (link below)

I would like to know what other people do to treat nerve related tingling or stinging after an outbreak. I am also interested to know if other gHSV-1 people have experienced this prolonged nerve tingling absent of lesions or an “outbreak”. 

https://www.amazon.com/gp/aw/reviews/B000GEDUKW/ref=cm_cr_dp_mb_top?ie=UTF8

Edited by floydmonk

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Celinaxox

Hi floydmonk I also have ghsv1 with a near constant nerve pain. Even when absent of lesions I seem to have distracting painful zaps shooting in my genital area, it also affects my work. I feel miserable. Basically all I've found so far is sitting in a shallow bath of hot water with some Epsom salts. that does help greatly. 

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Kurdt01

Unfortunately I've never found anything for neuropathy...it has a mind of it's own. Not as noticeable when I'm moving around but if i'm sitting around on the couch or sometimes to sleep it can get really bad.

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RSL888

i have a script for gabapentin and lyrica - both essentially the same. They help but my neuralgia is bad on my left side about once per year. 

Is that technically considered an outbreak ? This week I had a particularly stressful week and I think that triggered it. Been even painful to walk, and just touching my skin seemed like it was so sensitive around the top of my left leg around back to my butt. 

Anyone get this ?

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Lemnity

I have had an undiagnosed gHSV1 infection for 10+ years. I had blood tests done 6 weeks after exposure, then 1 year after exposure, which were both negative. The type of those blood tests, as I understood it, was ELISA, which didn't differentiate between types 1 and 2. I'm not sure about the reliability of those kinds of tests. In any case, negative for IGM and IGG antibodies for HSV in general. 

Of course I have clung to hope that these tests were reliable and I should assume I don't have herpes. But very many other infectious, autoimmune and neurological conditions were ruled out at one point (2 years after the symptoms started; along with a third general HSV test, which was again negative, but the specialist doctor acknowledged that it could still be herpes...) ---- and even though I wasn't seropositive, it's undeniable that herpes fits the symptoms better than anything else. There was oral sex, and then there was redness and "pimples" on one side of the penile mucosa, accompanied by leg pain and burning. When the rash occurs, it is preceded by prodromal tingling on the genital site, and accompanied by with magnified leg, buttock etc. burning.

I say "magnified", because even though the skin symptom have become more rare throughout the years and much milder in appearance, the nerve sensations are never completely gone. I always have the burning and tingling, also "twitching" (which I think is officially called 'fasciculations') sensations radiating from the sacral area. Like said, if I have an "outbreak", it is very mild dermatologically; couple of tingling red spots along with intensified neuralgia. But the neuralgia is never gone, so it's impossible to know if the virus is actively shedding all the time, or if those sensations are just due to "post-herpetic" damage to the neurons. Or if the viral genome itself, although latent, disrupted the neural signalling in some way. That's one technical question mark I have regarding a hypothetical functional cure that would disable the viral genome so that it couldn't make copies: what if these neuralgia symptoms aren't caused by viral particles or the constant damage to the nerves by viral shedding, but the latent viral DNA itself somehow? 

I'm well aware that there are doubts among some about whether constant nerve symptoms are a symptom of herpes, let alone in the absence of a definitive diagnosis. I would like to believe that also, and I've tried to believe that, because of course I wouldn't like to have herpes. But I've seen too many gHSV1 positive people report these issues similar to mine, that I must conclude: 1. I have gHSV1, and 2. The nerve symptoms are due to gHSV1.

I would just like to know the mechanism behind the constant neuralgia, which could point towards some solution. Does the virus shed (in some people) pretty much all the time, causing the sensations "actively"? Or are the sensations due to "passive" nerve damage? Does it not subside because it doesn't have enough time before the next "load" of active particles comes to do more damage? Or is it because the viral DNA in itself, even in latency, disrupts the neural signalling somehow in some susceptible people?

 

Edited by Lemnity

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Lemnity

So, let's say the CRISPR-based approach came to fruition at some point, I wonder (in light of the conclusions of the following study) whether just disabling the "active" part of the virus would affect the sensory ailments possibly caused by the latent genome itself.

Latent Herpes Simplex Virus Infection of Sensory Neurons Alters Neuronal Gene Expression

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC187408/#!po=39.1892

 

"Potential implications for HSV infections in humans. 

Given that the expression of several genes with known roles in neurotransmission and signaling is altered in latently infected ganglia, our results, using a mouse model and a virus strain with which no spontaneous reactivation has ever been observed (9), raise the possibility that latent HSV can affect sensation. Moreover, several of the genes whose expression is altered, including Gprc1g, Gabbr1, Kcnab2, and Kcnc1, affect neuronal excitability in an interconnected manner (13, 16, 36,57, 58, 71, 75, 82), which suggests a mechanism by which changes in neuronal physiology are induced by latent virus and could alter sensation. This predicts that neurons in latently infected ganglia would exhibit alterations in ion channel function such as have been observed in neurons in vitro (86). Consistent with this idea, postherpetic allodynia and hyperalgesia have been observed in mice latently infected with HSV for at least 40 days p.i. (87). Interestingly, there are reports of patients with recurrent HSV with symptoms of abnormal sensation, including pain, both before and even long after clinically evident disease (14, 25, 45, 46, 77). Although these symptoms are often ascribed to reactivating HSV (91), or could be due to sensory nerve or central nervous system injury, our results provoke the speculation that these clinical phenomena and perhaps more subtle changes in sensation may be due to effects of latent HSV infection on sensory neurons. These studies demonstrate that latent herpes simplex virus infection can alter neuronal gene expression and might provide a new mechanism for how persistent viral infection can cause chronic disease."

 

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