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Avatar universal

I think Herpes is very mis-understood..

Hello all,

I firmly am at the point where I believe in some people, Herpes can severely damage the nerves and cause lasting discomfort and irritation that never subsides. I can't tell you how many posts I have read by people that have been diagnosed with GHSV and had an outbreak, then things never went back to normal for them.

I am one of those people who has had constant redness and irritation since the initial flare up seven months ago. I have read so many posts by guys who are in a similar predicament. The story is usually the same, they go to doctor abc, then doctor xyz, then doctor whats his face... seeking treatment and help for this incredibly annoying and depressing problem. They get thrown steroid creams, anti-yeast creams, anti-biotics, you name it... with no relief. I have experienced similar and the last dermatologist I went to personally said that if the last cream he gave me didn't help, he would really have no other explanation than that of Herpes doing some type of permanent damage.

The damage I speak of is constant redness and irritation of the genitals. This is unlike that of an outbreak, it is more of a constant episode. The discomfort is maddening and doctors do not have any explanation and no treatment and refuse to accept HSV as a possible reason for this problem even though in almost all cases of this that I have read, HSV is a commonality.

It is so frustrating to come on to these forums looking for help and have doctors say the irritation and redness is caused by our mental anguish which is the biggest load I have heard of. That not everything is caused by HSV which I totally understand and agree with. In the event of everything else being ruled out, how can doctors and researchers of HSV not realize that it can cause seemingly permanent nerve inflammation.

I find the ignorance on this astounding... what else could cause these type of issues that align with nerve related issues... yet even grace, who by the way I totally respect and think is one of the best, if not the best, people on here, say it's not related. To a person who has done nothing else like getting tested for yeast, I can understand saying it's not HSV going on. To a person who has seen numerous doctors such as I, and am still living with a constant discomfort and irritation, is quite a different story.

The simple fact is, HSV can be DEBILITATING... and life ruining. They should teach what this virus can do to your body... and I think people would be much more willing to keep it in there pants. I had only one sexual partner before my fiance... and she ruined my sexual ability by giving me this virus. I have been dealt the short end of the stick as they say and so have many other guys and girls who have constant irritation, discomfort, and redness, yet get no help from anyone and dismiss it as having anything to do with HSV.

I just felt like ranting since it is so obvious that HSV did something to the nerves to keep them permanently inflamed. I wish I had the outbreaks where I go back to normal after... but I fear I will never be normal again. I am so ready to give up...
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101028 tn?1419603004
did you ever get a + herpes diagnosis? last you posted you were still consistently testing negative.

grace
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Avatar universal
Yes, positive via Western Blot
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Avatar universal
I can totally see it happening. Although I am not officially diagnosed what I've been experiencing the last 5 months or so has been very debilitating and does feel like constant burning and irritation of the nerves with lower back pain radiating into my butt and legs. It never ever goes away and gets slightly worse during my presumed outbreaks. I think it also depends on a type of strain you got (there are many strains of HSV 2) and also your individual way of reacting to infections/viruses. I know my own body always goes into overdrive when its fighting something so Im not surprised here that my immune system is not letting go in this case either.

How long did it take you to get diagnosed? It's been 5 months for me since exposure, my last Igg test done at 4 months still negative. Im thinking of getting a WB next month as my symptoms are just not resolving and seem very in line with herpes, given that there is also some indication that the last guy I slept with has it as well. Also, do you take antivirals for it? If so, do they help at all?
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101028 tn?1419603004
well I"m finally you got the answers you were looking for but if you think your continued symptoms are all due to your hsv2, please by all means post to Terri Warren for her opinion on the herpes expert forum.

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1705114 tn?1314218504
Please post to Terri Warren if you believe your ongoing symptoms are a cause of hsv2. And Grace is THE best :) hehehe
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1705114 tn?1314218504
And also a faster typer!!! :(
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Avatar universal
Grace, I am happy I got an answer but am unhappy about how it has affected me. The issue I was trying to bring up is the fact that herpes experts firmly believe HSV cannot due permanent or in the very least... long lasting problems.

Herpes experts across the board say that HSV only causes problems for a few weeks at the most and then goes back away which I believe is mostly the case. I believe the body can get the virus under control and that "outbreaks" are true in that sense. The point I was trying to state is that I believe HSV can be more harmful than what is thought of right now and I have plenty of stories and forum posts to back it up.

My symptoms correlate to either nerve damage or nerve inflammation. The extreme pain I was in which I will admit... has been gradually subsiding over the months that go by makes sense to be something nerve related and possibly my body is taking a long time to heal those damaged nerves. I'm sure you know Grace that nerves are very delicate and can take months to years to heal if they have been damaged if they heal at all. Hopefully my progress will continue to happen and at some point... I will feel the way I used to.

I'm not trying to sound like a jerk about it but I don't understand why "experts" think they know how this virus reacts when in all reality, what is commonly said about it is that it affects everyone differently. Seems like for some, it is no big deal, for others, such as myself, it is horrible. The notion that it could leave nerves inflamed and irritated doesn't seem very unreasonable considering how many people suffer from this on internet forums with no explanation from their doctors and no treatment that has been helping.

It just seems like if the symptom is anything that lasts longer than a few weeks, that it can't possibly be HSV related which I think is a travesty to believe in. The lacking knowledge about HSV by medical doctors is also atrocious. I just would like to know who was the person that decided that HSV cannot cause prolonged issues in some people.
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Avatar universal
Here here! So with you on this one.  So can I ask just to confirm, did you have negative IGG blood tests and then a positive WB with no new sex partners. After your positive WB have you now tested positive on IGG or still negative?  Any swabs on lesions?  And did you current and passed partners test positive or negative on IGG and WB? Sorry for so many questions but trying to get the whole picture, thanks for clarifying this. Just interested to know this along with the atypical symptoms you have.  Amazing how a stupid virus can cause so many issues and upset in life isn't it?
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101028 tn?1419603004
in the few studies we have on the small percentage of folks who had neuropathy from herpes, all of them had 100% resolution of symptoms while on daily suppressive therapy.   I just really think it's doing yourself a disservice by attributing it all to herpes when you have ongoing symptoms that don't clear up while on daily suppressive therapy.

Yes indeed everyone's body is different and as I've actually said previously in the past here, is that sometimes what is probably happening is that folks are being infected with 2 different infections at the same time which causes their issues, not all the herpes since it happens so infrequently.  we know in medicine that many viruses, when contracted at the same time, make outcomes worse.  One such example is rsv and human metapneumovirus. contract just one at a time as a child and you'll be sick but aren't likely to have long lasting health issues, contract them both at the same time and you will most likely develop asthma for a lifetime.  We know having hsv2 and hiv makes it much harder to control hiv. I think in time, someone will get lucky and discover that coinfection with hsv2 and X virus leads to issues that most folks who contract hsv2 don't ever get.   Unfortunately what makes it really hard is that it's usually too late to test for other infections by the time someone has figured out that their symptoms are going to linger. It's also very hard to study something that happens to 1% or less of folks who have hsv2 too.

did you try any medications for neuropathy too?



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Avatar universal
I support what Grace says above and believe this is HSV 1 or 2 and a second virus in concert. Given that up to 80% of sexually active adults have HPV, I have a strong inclination this could be the viral co-infection. However, the fact that the pap smear-equivalent is very uncommon practice in men and the fact that both types of HSV are omitted from a requested STI panel would suggest many more people are co-infected with HSV and HPV than we might know.
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