The "other" Herpes symptoms

[EastCoastMan]

Hi all -

 

I (was) a healthy 50 year old man until a year ago. I’m a personal trainer and marathon runner.

Diagnosed with genital HSV-2 almost exactly a year ago (3/1) via urethra swab. Blood test was negative. No external lesions on skin.

About a week after the diagnosis, the real fun began. I experienced horrible flu-like symptoms, swollen glands in the groin area, nausea, twitching of legs and buttocks and extremely dry eyes. Also experienced twitching of my left eyelid, cheek and ADD type symptoms (zero attention or concentration skills) that lasted about 9 weeks. Never had a fever or had lesions anywhere on my body.

I’ll add in that I’ve had no serious illness over the past 3 decades…

My “outbreaks” are not the classic symptoms I read about everywhere either. About every 3 to 4 weeks, the symptoms described above return. I returned to my doctor about 5 months after the initial diagnoses because she wanted to redo the blood test. The test came back NEGATIVE. I was confused about the result but we both agreed that we should stick with the positive swab result. Better yet, during my annual physical last week I convinced her to redo the HSV blood test. Again, results NEGATIVE and she threw more Valtrex and anti-nausea refills at me.

This disease in not just lesions and discomfort for me. It apparently can affect your entire nervous system as proven (for me) by symptoms getting better after taking 2 Valtrex daily.

Exercising actually seems to trigger my outbreaks. Participated in an Ironman competition last week and my “outbreak” started 3 days later.

Most healthcare providers apparently understand this about HSV-2:

Infected via sexual contact

Causes lesions and some lymph node swelling in the genital area

Retreats to nerve ganglia near base of spine

Environmental forces trigger the virus to re-activate

Repeat

 

That’s not even close for me.

 

Has anyone else had a “positive” swab test for HSV-2 but the blood test is still NEGATIVE after 1 year?

Same type of symptoms?

There seems to be nervous system issues that a lot of folks don't talk about...

 

Stay strong everyone!

[WilsoInAus]

Returning to the swab test? Do you know if it was culture or PCR? Did you receive oral sex in week before the symptoms? 

There is the possibility this is HSV-1 if the culture was not typed (quite common).

If you take the Westernblot and it is negative, then there is some suspicion of a contaminated swab sample, mix up etc.

[LillianPanos]

Hi... Thanks for sharing your story.  I started getting a sore around 3-10 last year. The outbreak lasted 6 weeks. My primary swabbed results said positive for h2. 3 months later went to a gyno as my primary didn't even want to prescribe anything and take only when having ob. The gyno ordered blood.  Blood came back h1 positive h2 negative.  Gyno called and said I have h1 that the primary didn't type the swab correctly. I called  Primary she said she did. I have had 2 more blood tests one at 19 weeks and  9 mnths same results. Not uncommon. I had fever blisters as child and adult but not on years thats h1. I have obs occasionally but have been on antiviral from the beginning as in a relationship  Many say taking the antiviral interfere with antibodies developing. I work out almost daily not iron man I'm older than you. I too have nerve pain not delibatating but its there. Many others here have nerve pain. Mine is Mostly in butt down leg similar to sciatic pain.  make sure you have copies of results. I too super healthy. why were you tested for hsv? Many people have no symptoms.  I am going thru some kind of ob now.

2 hours ago, EastCoastMan said:

Hi all -

 

I (was) a healthy 50 year old man until a year ago. I’m a personal trainer and marathon runner.

Diagnosed with genital HSV-2 almost exactly a year ago (3/1) via urethra swab. Blood test was negative. No external lesions on skin.

About a week after the diagnosis, the real fun began. I experienced horrible flu-like symptoms, swollen glands in the groin area, nausea, twitching of legs and buttocks and extremely dry eyes. Also experienced twitching of my left eyelid, cheek and ADD type symptoms (zero attention or concentration skills) that lasted about 9 weeks. Never had a fever or had lesions anywhere on my body.

I’ll add in that I’ve had no serious illness over the past 3 decades…

My “outbreaks” are not the classic symptoms I read about everywhere either. About every 3 to 4 weeks, the symptoms described above return. I returned to my doctor about 5 months after the initial diagnoses because she wanted to redo the blood test. The test came back NEGATIVE. I was confused about the result but we both agreed that we should stick with the positive swab result. Better yet, during my annual physical last week I convinced her to redo the HSV blood test. Again, results NEGATIVE and she threw more Valtrex and anti-nausea refills at me.

This disease in not just lesions and discomfort for me. It apparently can affect your entire nervous system as proven (for me) by symptoms getting better after taking 2 Valtrex daily.

Exercising actually seems to trigger my outbreaks. Participated in an Ironman competition last week and my “outbreak” started 3 days later.

Most healthcare providers apparently understand this about HSV-2:

Infected via sexual contact

Causes lesions and some lymph node swelling in the genital area

Retreats to nerve ganglia near base of spine

Environmental forces trigger the virus to re-activate

Repeat

 

That’s not even close for me.

 

Has anyone else had a “positive” swab test for HSV-2 but the blood test is still NEGATIVE after 1 year?

Same type of symptoms?

There seems to be nervous system issues that a lot of folks don't talk about...

 

Stay strong everyone!

 

[EastCoastMan]

1 hour ago, WilsoInAus said:

Returning to the swab test? Do you know if it was culture or PCR? Did you receive oral sex in week before the symptoms? 

There is the possibility this is HSV-1 if the culture was not typed (quite common).

If you take the Westernblot and it is negative, then there is some suspicion of a contaminated swab sample, mix up etc.

Swab was a culture that could determine type. My Doctor told me it was positive for HSV-2.

[EastCoastMan]

19 minutes ago, LillianPanos said:

Hi... Thanks for sharing your story.  I started getting a sore around 3-10 last year. The outbreak lasted 6 weeks. My primary swabbed results said positive for h2. 3 months later went to a gyno as my primary didn't even want to prescribe anything and take only when having ob. The gyno ordered blood.  Blood came back h1 positive h2 negative.  Gyno called and said I have h1 that the primary didn't type the swab correctly. I called  Primary she said she did. I have had 2 more blood tests one at 19 weeks and  9 mnths same results. Not uncommon. I had fever blisters as child and adult but not on years thats h1. I have obs occasionally but have been on antiviral from the beginning as in a relationship  Many say taking the antiviral interfere with antibodies developing. I work out almost daily not iron man I'm older than you. I too have nerve pain not delibatating but its there. Many others here have nerve pain. Mine is Mostly in butt down leg similar to sciatic pain.  make sure you have copies of results. I too super healthy. why were you tested for hsv? Many people have no symptoms.  I am going thru some kind of ob now.

 

Short, but sad story about being tested - girlfriend and I started having discussions about having a child. We both agreed we should have full STD checks before stopping protected sex. Mine was negative, obviously hers was not but she told me the opposite. When I told her I tested positive she later admitted to me she lied and was positive genital HSV-2.

[WilsoInAus]

I'd still confirm that, many cultures are assumed to be HSV-2 if swab is taken from genital region.

Actually I forgot to check that you had the IgG antibody test and not IgM or PCR on blood.

 

[LillianPanos]

Just now, EastCoastMan said:

Short, but sad story about being tested - girlfriend and I started having discussions about having a child. We both agreed we should have full STD checks before stopping protected sex. Mine was negative, obviously hers was not but she told me the opposite. When I told her I tested positive she later admitted to me she lied and was positive genital HSV-2.

Sorry to hear she lied to you, the stigma and shame damages people...tho many people actually dont know they have it, as they have no symptoms and they pass it on my giver I think did not know...I too had the eye twitching in the beginning people tried to tell me it wasnt related to hsv but I knew it was I never had twitching like that, it went away in after a few weeks. actually the nerve pain is getting better its tolerable and I blame it on exercise. I know body and know whats not normal anymore or related to this virus!!! Hope you feel better soon.

[Unrequited]

51 minutes ago, LillianPanos said:

Sorry to hear she lied to you, the stigma and shame damages people...tho many people actually dont know they have it, as they have no symptoms and they pass it on my giver I think did not know...I too had the eye twitching in the beginning people tried to tell me it wasnt related to hsv but I knew it was I never had twitching like that, it went away in after a few weeks. actually the nerve pain is getting better its tolerable and I blame it on exercise. I know body and know whats not normal anymore or related to this virus!!! Hope you feel better soon.

Eye twitching?

[LillianPanos]

Just now, Unrequited said:

Eye twitching?

Yes about a month after being diagnosed had severe eye twitching defintely related to hsv the meds or all the damn vitamins I was taking!  it gradually stopped after a few weeks... I know related to this.  

[dissolvedo2]

My experience is quite similar to yours; I had constant outbreaks for years, I've been on anti-virals for a long time and yeah, nervous system affected.  Trigeminal neuralgia (like eye twitching) and lots of other stuff.  I'm hoping that a functional cure is on the horizon.

[Soconfused2]

Im a long distance runner also, im 21 though. But ive been experiencing some nerve pain feelings occasionally but i never know if its just from strenuous running or hsv. Im dealing with some eye discomfort recently and im not sure if im overthinking that its hsv but it sure feels like it could be. 

[EastCoastMan]

1 hour ago, dissolvedo2 said:

My experience is quite similar to yours; I had constant outbreaks for years, I've been on anti-virals for a long time and yeah, nervous system affected.  Trigeminal neuralgia (like eye twitching) and lots of other stuff.  I'm hoping that a functional cure is on the horizon.

Unfortunately I don't see anything on the horizon for people already infected. I'm hoping I'm wrong though...

[EastCoastMan]

2 minutes ago, Soconfused2 said:

Im a long distance runner also, im 21 though. But ive been experiencing some nerve pain feelings occasionally but i never know if its just from strenuous running or hsv. Im dealing with some eye discomfort recently and im not sure if im overthinking that its hsv but it sure feels like it could be. 

For me, I believe the symptoms I described and still going through are all HSV. Never had them until infected with HSV. Being an athlete I know my bodies "normal" aches and pains. The dry eyes, facial and leg twitching, sore ligaments around my hips and knees all starting within 2 weeks of HSV infection. And the soreness is not a normal muscle ache from working out or running.

I've only been HSV positive for a year... hoping things get better as time passes. Or even better, there is a breakthrough in management or cure meds.

[EastCoastMan]

1 hour ago, dissolvedo2 said:

My experience is quite similar to yours; I had constant outbreaks for years, I've been on anti-virals for a long time and yeah, nervous system affected.  Trigeminal neuralgia (like eye twitching) and lots of other stuff.  I'm hoping that a functional cure is on the horizon.

Came across this while killing time before bed. It is a pretty recent article.... Looks promising

 

http://www.popsci.com/herpes-vaccine-study

 

[higgs]

Did any of you get a Western Blot to see if it would would show up positive when other blood tests are negative?  From everything I've read on this site and others, it's the people with the nerve pain and atypical symptoms who do not test positive by traditional testing methods.  It seems like there are many of us yet we are often dismissed.  Some of us were not "fortunate" enough to get a swab test done on primary so we are stuck in diagnostic limbo.  Help!!  Also antivirals definitely affect testing from what I can see in a really bad way and no one knows how much.  Have all of you used antivirals regularly?

Edited March 17, 2017 by higgs

[Soconfused2]

1 hour ago, EastCoastMan said:

For me, I believe the symptoms I described and still going through are all HSV. Never had them until infected with HSV. Being an athlete I know my bodies "normal" aches and pains. The dry eyes, facial and leg twitching, sore ligaments around my hips and knees all starting within 2 weeks of HSV infection. And the soreness is not a normal muscle ache from working out or running.

I've only been HSV positive for a year... hoping things get better as time passes. Or even better, there is a breakthrough in management or cure meds.

True, i think its a different feeling that I haven't felt before this. But yeah i think the first year is the worst, im more tired than I usually am though

[Lisajd]

1 hour ago, EastCoastMan said:

For me, I believe the symptoms I described and still going through are all HSV. Never had them until infected with HSV. Being an athlete I know my bodies "normal" aches and pains. The dry eyes, facial and leg twitching, sore ligaments around my hips and knees all starting within 2 weeks of HSV infection. And the soreness is not a normal muscle ache from working out or running.

I've only been HSV positive for a year... hoping things get better as time passes. Or even better, there is a breakthrough in management or cure meds.

I have normal aches and pains from exercise but I don't believe that since I was diagnosed I have had any other or different type of pain.  My first outbreak was very minor and I'm coming up to 2 years now and have had no other outbreaks that have caused me any real issues.  I do know about the people who are quite s*** who still have symptoms and maybe you need to take a step back and see whether the issue is subside

[PurpleandGray]

Yes there are people on here who repeatably test negative by blood test.,have you heard about the vaccine? That should help you a lot. 

[higgs]

Even on western blot?

[LillianPanos]

Just now, higgs said:

Did any of you get a Western Blot to see if it would would show up positive when other blood tests are negative?  From everything I've read on this site and others, it's the people with the nerve pain and atypical symptoms who do not test positive by traditional testing methods.  It seems like there are many of us yet we are often dismissed.  Some of us were not "fortunate" enough to get a swab test done on primary so we are stuck in diagnostic limbo.  Help!!  Also antivirals definitely affect testing from what I can see in a really bad way and no one knows how much.  Have all of you used antivirals regularly?

Yes I have been using the antiviral since I was diagnosed

[LillianPanos]

Just now, higgs said:

Even on western blot?

I know of one person who has tested negative on wb and all other blood tests, was diagnosed by swab h2

[higgs]

It sounds like it's more common than the experts admit. Terri Warren says she only knows of a handful of people WB negative and swab positive amongst many thousands. Why?  Does this person get typical OBs? Why no antibodies?

[WilsoInAus]

No one really knows. Maybe a genetic or environmental issue impacting the immune system such that there are no antibodies or at least none attracted to the HSV viral signature within the Westernblot. This does not mean the person is absent an immune reponse, blood antibodies represent quite a few of the 80 elements that address HSV, but there are plenty of others.

[SnowAngel]

I'm sorry you're having so many issues, I'm also a person who repeatably tests negative by blood test. It seems like the people who do test negative by igg are the ones who have it the roughest (odd symptoms) for some reason. Anyone know why? 

Edited March 17, 2017 by SnowAngel

[EastCoastMan]

12 hours ago, LillianPanos said:

I know of one person who has tested negative on wb and all other blood tests, was diagnosed by swab h2

You can add me as the second person you know. I've had all available types of blood tests, including Western Blot that came back negative. Diagnosed with genital HSV-2 via urethra swab (no visible soars). No sores appear during outbreaks, just nerve pain, muscle twitching and generally the worst flu-like feeling possible. I'm in the States, is there experimental vaccines/treatment available anywhere? I should also add that even on Valtrex twice daily these ob's still last 2 weeks or so, leading me to believe that the antiviral is not helping much.

Edited March 17, 2017 by EastCoastMan