20 years infected and still no positive diagnosis

[AlexFrancis]

Hi,

Looking for help again after having buried this disease many years ago.

I will keep this post brief as my story is for another post. I was infected 20 years ago next year. But I still do not have a positive diagnosis. There is a singular event that enables me to understand very clearly why I know I was infected. And another major factor is that I passed this onto my partner, 1 year after I was infected, I am still with her and she has had problems over the same period. (again undiagnosed)

My question is related to trying to understand why over 19 years my 3 blood tests have been negative. All have been IgG type specific, the first one maybe 6 months after infection, the second 2 years and the most recent 19 years. My wife's one and only blood test maybe 6 months post infection.

I like a lot of others had a bad time. Maybe the first 5 years almost constant outbreaks (no blisters) the last 10 years it eased up, possibly 1 detectable  (feeling pain) outbreak a year and of course I was able to bury mentally the idea of being infected with GHSV11. But since January of this year constant outbreaks with pain.

In the early days I did 1000's of hours of research and my story is like a lot of those that post here. I am UK based so the WB is not really an option. PCR swabbing was not an option 20 years ago. And lockdown means walk in clinics are closed.

Anyway to my point, I have never found an answer to the question about specificity of blood test being related to a strain of the virus or the infected persons response to the virus. So for example will my blood tests and those of my partner always be negative (excluding WB) as we are infected with a strain that does not elicit the immune response and the specific protein that standard IgG serology tests detect?

Any information greatly appreciated.

 

[DeMar]

Great question. One I can 't answer.

I am in the almost exact opposite situation.

I have never been aware of having had any symptoms. I had tingling at eh end of my penis but assumed it was just maybe a UTI or something like that.
Then out of the blue I tested positive to HSV2. Last time I had sex was over a year ago and I used a condom (not full protection as I've now learned) an before that I was married for nearly 20 years, so I could have been carrying this for over 20 years.

But I am dumbfounded that I've tested posative. And angry, as it has cost me my new relationship which has been going on a year and we got tested before we started having sex. It's not the sex I mourn, it's hte relationship because we were both so in love but my SO has a immunilogical deficiency (Traumaed pituitary gland) and cannot risk catching it (which she almost certainly would eventually).

Sorry, I'm broken.

[AlexFrancis]

How were you tested? A single test, without ever having symptoms I would discount. That is the problem with this virus, unless you have classical symptoms that can be swabbed and HSV virus grown from that swab, testing seems so unreliable.

[My thoughts]

IGG test are highly reliable after 6 months of exposure.
My suggestion is to get a swab test when you get an outbreak.
The other way if you want to really know if you in fact have herpes, take the UW Western Blot test. That's the golden standard test for herpes.

I would suggest that you don't have herpes and you have anonther condition. There are several conditions that can be mistaken for herpes.

 

Regards,

[TBarr]

Hi Alex read my last post if you have had igg all negative and never had a fluid filled blister it is something else I know i lived this for 2.5 years

[AlexFrancis]

Hi TBarr,

Yes I read your story and I am glad you are in a better place. I would love to focus and convince myself that I don't have GHSV, but 20 years on and having put it to bed for almost a decade I can't reconcile what I see and feel every day as being psychosomatic. I have also passed this on to my partner, which reinforces my view of what is really going on.

Diagnosis of GSHV is problematic in the absence of lesions that can be swabbed. And I feel that that is the reason why I am in this nightmare, not the fact that I don't have it. If I was US based I would have the WB, being in the UK it is somewhat harder to organise.