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New anonymous

Erectile dysfunction and nerve pain

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Seeker1960

Wilso, for you this some academic exercise. For the at least 30 but many more this not a point of argument. These people, myself included live in daily pain since being exposed to HSV. Neuropathy is our reality not a point of argument. We have looked for answers. Taken MRIs, blood test and seen all kinds of specialist who cannot explain the cause of our symptoms. They like you dont consider HSV a possibility because they like you only know of the typical symptoms and treatments of antivirals.

We know we were 100% healthy before our HSV infections then suddenly developed these symptoms within days or weeks of exposure. So it adds insult to injury when people like you and the so called "experts" dismiss us because we are a minority or a small subset of HSV infected who have these symptoms.

You dont have to agree with me or the more than 30 others. I say 30 but many more have come here and left after being dismissed by you and others.  

We are in a hopeless situation because even if our situation is or is not caused by HSV there is  not many options for treatment. If HSV is the cause as we believe then our only hope is a therapeutic vaccine and even that may be a long shot.

If you want help tell us whats good for nueropathic pain not that we have back problems.

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VVK

Maybe it may be helpful to approach the problem by considering what could be done to address neuropathic pain in the event that it was actually caused by HSV or the immune response to the virus. I can think of three possibilities:

1. The immune system has created faulty anti-HSV immune cells that are targeting healthy tissue and causing pain.

2. HSV is causing damage to tissue through reactivation and replication processes

3. The body is lacking the required nutrients and conditions to repair the damage done by 1 and 2.

I suspect that if the problems are caused by a combination of Points 1 and 2, then consistent long-term suppressive antiviral therapy may be helpful in calming the immune response. However, this would not work if the immune system has learned to recognize healthy tissue as a target on its own. In this case, a complete "reboot" of the immune system would likely be the solution - but I do not know any current therapy that accomplishes that beyond what is involved in chemotherapy, which is very dangerous.

The curious situation with Point 3 is that inadequate nutrition is tied to autoimmune disorders. The solution could be as simple as optimizing levels of critical vitamins and minerals, the main ones to look out for being iron, magnesium, selenium, zinc, vitamin A, C, D, and K (1 and 2).

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WilsoInAus

@Seeker1960there are quite a few issues with what you right that are not particularly helpful to the OP and others reading this thread.

You suggest that it cannot be chance that an infection with HSV has made people unhealthy. That may seem the case in terms of people who post here, however in the scope of the 5 billion people that have been infected with HSV, there are no more than simple chance that another ailment is causing their issues. As I always say, it is important not to conclude herpes in case it is something more serious. It is not appropriate when someone says they test negative to keep suggesting that herpes is their problem as the odds are overwhelmingly now that herpes is not the cause.

Just because someone is infected with HSV does not mean that it is HSV causing the issues. There are inevitably multiple things that transmit during sex, mostly harmless, not always and the number here represent no more than sheer chance that they also picked up another virus or bacteria. You are also excluding the psychosomatic aspects of a HSV infection and what they do (which occurs for both people who were actually infected and those who weren't). Many people obtain herpes from agents such as sexual assault, one night stands, cheating on their partners, homosexual experiences or someone they simply thought they could 'trust'. Again to simply assume that herpes is the only cause of their issues is not helpful and can seriously harm mental health. We need to be sensitive to this.

You describe full processes of testing to diagnose your ailment. That's a good thing to do, but why not encourage others to do the same rather than suggest it is an open and shut case that they will reach your conclusion. Don't they deserve the same advice to test thoroughly based on other possibilities before reaching the conclusions you have?

Far from dismissing people, I truly care for these people. I care enough to encourage them to seek an answer in case it is not herpes. This is because in at least some cases it will not be herpes. If it is herpes, then what has been lost?

People simply deserve full information and facts. That's all I ever proposed. I have given the facts above to help the OP and they can choose to do what they will. 

Everyone's circumstances are different and there is no value in our conclusions without the full facts of the situation that have led a person to their own conclusions and believe everyone who bears some similarity must reach the same conclusion.

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Seeker1960

Wilso, In not so many words I agree with you. No one should jump to a conclusion that they have been infected with HSV solely on symptoms or similar type of risk for exposure. I would say that every possible diagnostic tool be used and every possibility should be eliminated. I realize that of the billions of HSV infected people their infections cause them little or no discomfort. The issue is that once the other possibilities are eliminated, that there is probable cause to suspect an HSV infection, exposure to a known HSV positive person and development of nueropathic issues. That HSV should be considered as a causal agent. It seems HSV is too quickly dismissed because if the typical symptoms are not present or it is not recognized that HSV is the only remaining possible explanation for sudden onset of nueropathy originating in the Sacral or Trimengial area.

Of the 60,000 members here I know the vast majority do not have nueropathy associated with HSV. Then there are unfortunate few. The small  subset who have this and for some unexplained reason HSV is a major health concern for them. I have read many posts of people here looking for answers who have lost hope and talked about ending their lives who suddenly just vanished from this site. I only hope that they got better and did not need the forum any longer.

I respect your knowledge of the science and your understanding of the mainstream thought on HSV and other viruses. I don't like getting into confrontations and arguments for arguments sake. It is obvious that your are well educa

ted. Yet, I still believe that there is more to studied and learned about different HSV virus Strains, immune response and other genectic factors that can trigger the virus to take a path that causes devastating outcomes instead of the typical.

I fully agree with the comments made by VVK and the logical approach he describes to looking at the problem. He does not dismiss the possibility. He provides possible causes for possible outcomes this I believes to possible solutions or more effect treatments and diets that can reduce nueropathy symptoms. 

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Lisajd
21 hours ago, New anonymous said:

She was the only one after my divorce. Its the time frame with symotoms immediately afterwards and an outbreak within the following week and being fine before this living hell. i am 1000 percent sure it was her. We are from a small town and she is well known and i should have known better. I will say that for the rest of my life

Did you get the lesions swabbed?  Not sure if i missed this

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Lisajd
8 hours ago, Seeker1960 said:

Wilso, for you this some academic exercise. For the at least 30 but many more this not a point of argument. These people, myself included live in daily pain since being exposed to HSV. Neuropathy is our reality not a point of argument. We have looked for answers. Taken MRIs, blood test and seen all kinds of specialist who cannot explain the cause of our symptoms. They like you dont consider HSV a possibility because they like you only know of the typical symptoms and treatments of antivirals.

We know we were 100% healthy before our HSV infections then suddenly developed these symptoms within days or weeks of exposure. So it adds insult to injury when people like you and the so called "experts" dismiss us because we are a minority or a small subset of HSV infected who have these symptoms.

You dont have to agree with me or the more than 30 others. I say 30 but many more have come here and left after being dismissed by you and others.  

We are in a hopeless situation because even if our situation is or is not caused by HSV there is  not many options for treatment. If HSV is the cause as we believe then our only hope is a therapeutic vaccine and even that may be a long shot.

If you want help tell us whats good for nueropathic pain not that we have back problems.

I belong to several support groups and many complain of nerve pain since hsv. So plus 30...

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Yepper

Wilson you have no idea what your talking about people know when their bodies are messed up you obviously have no idea what it's like. So I would suggest you get off the forums if you have no good advice. People suffer everyday. You can point to facts or opinions all day but at the end of that day you still have no clue what it's like bud.

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WilsoInAus
1 hour ago, Yepper said:

Wilson you have no idea what your talking about people know when their bodies are messed up you obviously have no idea what it's like. So I would suggest you get off the forums if you have no good advice. People suffer everyday. You can point to facts or opinions all day but at the end of that day you still have no clue what it's like bud.

You have no idea what my experience is with herpes or any other disease or condition, or that of my partner or our families. Nor is this relevant to another individual's issues. 

My advice is based on extensive personal knowledge with herpes as well as extensive research on the topic supplemented by some relevant studies years ago. Nevertheless it is just that, advice and commentary and people are as free to do with that as they will as I am free to write it.

If these fundamentals of human interaction as supported by an inclusive community environment are something you cannot respect regardless of your level of agreement with what is being said the it needs to be humbly suggested that forums such as these are not for you.

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New anonymous
2 hours ago, Lisajd said:

Did you get the lesions swabbed?  Not sure if i missed this

I did not. It is a timing issue everytime. 

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Mackie82

Hey New anon, I have the same symptoms and I have done Million test and seen a lot of deferent specialist. And the only possible cause is HSV also nothing else could cause these symptoms. Mr. Wilson doesn't have genital herpes so he's insisting here and eveywhere else that the virus doesn't cause nerve issues. I am not a doctor and knows nothing about siense but knowing that the virus lives in the nerves and re activates on the nerves enough to understand that it's the virus. Talking about myself I have no single health problem I have done really more than 50 tests , MRI,CT scan and few cultured and all clear I have both hsv1&2 and facing the nerve issues up and down in my body. I will be doing the nerve blocking on the next Sunday but the doctor will confirm the exact procedure today since he advised some suction before the blocking to get better result and last for more time, you are not alone there are a lot of people with the same symptoms . Just to remember this is virus is the not the same for everyone so it's not going to cause nerve isuues for everyone . Thanks 

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Sanguine108
On 3/29/2017 at 9:43 PM, WilsoInAus said:

based on extensive personal knowledge with herpes as well as extensive research on the topic supplemented by some relevant studies years ago.

30 year old, 1st edition medical text books...

Yeah, it'd be great if you could humor us all by posting sources to your "information".

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New anonymous

After contacting the pudendal specialist i have cancelled my appointment. All he will be able to do for me is schedule a surgery to burn the pain sensors off of the nerve which could relieve the pain on that one paticular nerve but risk damaging it further and furthermore it will not help my problem. I have found another doctor more locally in my area whom i visited with yesterday he is a chiropractic neurologist who deals whith peripheral neuropathy. I have told him my whole story and as rare as my case is, he believes it could be hsv causing damage or an immune response that has damaged the myelin sheath on the nerves. All the nerves are physically still there but the damaged broken myelin could be what is causing severe debilitating dysfunction and pain. I imagine something similar to say ms? The leg pains are coming back with neuropathy from the waist down. He is going to attemt to use laser therapy and supplements along with a few other things to attemt to restore nerve function. 24 treatments 3x a week for 8 weeks. also at the tune of six grand out of pocket because insurance wont cover it. But as @VVK said in case it is the immune response and my body has tricked itself into attacking its own tissue i don't see a full recovery possible because it will always be an ongoing problem. Its a long shot but its the only one i have currently as i am desperate for any relief. I am borderline fixing to lose a job that i have worked hard  for along with other things that happen when that happens. I dont often know how to cope with the depression and pain. This has been an absolute nightmare.

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Sanguine108
3 hours ago, New anonymous said:

he believes it could be hsv causing damage or an immune response that has damaged the myelin sheath on the nerves

real talk

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WilsoInAus

Yes he could be right as he must be referring to VZV as there is no positive HSV 1/2 test here.

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WilsoInAus

Huh? I think you missed a few posts, please keep up with the conversation. Testing is negative for HSV 1/2 and no elimination of VZV, CMV, EBV etc. which is probably what the doctor referred to.

Pleae stay on topic to focus on the OP on medical issues and not further defend into paranoia surrounding nerve pain for a virus you don't have.

Lets keep it real, even the alien abduction forums are looking more credible than the themes emerging across this website.

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New anonymous

Well im still here hanging on by a thread. After much more reaserch and discussuon with the dr the best answer i have is that my immune system is causing my problems. I presume i was always susceptible to bad things if i were to run across this virus. as i have developed an auto immune disease. Hsv is known to trigger these in certain people with genetic predisposition.( my mother had lupus, fibromyalgia and diabetes type 2 and overall poor quality of life) Physical Therapy is not helping but i recived many many more supplements yesterday from my practitioner to try to "reset my immune system" and to get it to try to stop attacking me. Its hard to believe that if this is how its going to be for the rest of my life then it is almost certain, in my mind anyway that i do not want to live this life. It makes me angry and mad that i have been delt this hand at such a young age. I have a little boy from my previous marriage that has my heart and that is the only thing i hang on too. The pain and zero quality of life has taken its toll on me physically and mentally. My entire family is distraught. Im a grown man who is a welder and i feek like im a few weeks away from disability. I hope this may help some of you who stumble across this post. Thanks.

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Zaebals9

Pumpkin seeds, red meat, garlic, pomegranate. And I would also recommend these herbal pills malegra . It gave me hardest boners I've had in my life.

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MikeIke
On 3/28/2017 at 7:45 PM, WilsoInAus said:

If the test is for IgG and the results are reported as <0.90 then there were numbers but I imagine the lab protocol is not to report the specific numbers. This is probably because there were to many questions regarding numbers moving from say 0.1 to 0.4 back to 0.2 which is meaningless discussion as they are all negative representing an absence of antibodies.

At this time, testing therefore confirms that you do not have antibodies sticking to the testing wells and hence are unlikely to have either virus. If you want further confirmation, only the Westernblot can do that for you.

It is not correct that HSV-1 causes more neurological issues in the genital region than HSV-2. The likes of Terri Warren do not believe they have seen it at all on account of HSV-1 being considerably weaker in the genital region.

Please do try to resolve this and share your experiences, it may help other people enormously.

https://westoverheights.com/forum/question/high-negative-values/

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WilsoInAus

@MikeIke thanks Mike good quote from Terri.

She states that she is only concerned about high negatives if seroconversion during the window period is possible. Otherwise she is very comfortable that negative is negative.

Was that the point you wanted to make?

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MikeIke

@WilsoInAusyes just I think that the number should be provided if it's a high negative during the window so maybe labs are doing a disservice by not offering it?  I definitely agree with you that people fretting over a .14 vs a .26 is probably not healthy/worthwhile.   

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Terrell
On 3/28/2017 at 9:24 PM, New anonymous said:

It was 10 seconds of oral and 10 minutes of protected sex that has led me here. I waited a while to see if things would resolve in time but eventually i confronted my giver. I got the standard "ive had the full screen and im clean". Then during the conversation while i showed her all of my medicine for proof she asked "how do you know that it was me". Never heard from her since.I know for a fact that it was her but nothing more can be done now except to try to fix my problems. As i am typing this i can feel fasculations in legs and my feet keep going numb. This has taken all of my quality of life away.

Bro seriously I literally went through the exact same problem nerves damage that was deem unexplainable, and rare. Doctors were adamant it was hsv however it developed after sexual encounters and boom severe nerve pain, and later after demanding more test overtime hsv the culprit.

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Jas14

I have HSV & foot nerve pain. I am 100% sure it's from HSV. My Infectious Disease Dr, very well known in NJ, said it is a possibility, he is not ruling it out. There are many strains of HSV & the one I have affected my feet. 

I take L-Lysine, Daily Complete Vitamins & Vitamin B-12.

My heart goes out to you. I will pray you find relief. Keep your head up & think positive. Sending hugs.

Keep us posted

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