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blurneworder

After 11 months and 12 doctors telling me no - I tested positive

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blurneworder
Posted (edited)

For 11 months I've been suffering with symptoms of HSV that many doctors and people on this board have assured me are not herpes. I've had multiple swabs and blood work that all came back negative.

Yesterday I received the news that I am positive for HSV 1.  I don't know where it is on my body, but it's likely I have it orally and genitally based on my ongoing daily symptoms and the initial encounter I had with the girl who gave this to me.

I had blood work done through a Rheumatologist. The three tests I had were:

HSV 1 and/or 2 Abs, IgM by ELISA - NEGATIVE, 0.36

HSV Type 1 and 2 by PCR Group - NOT DETECTED

HSV 1/2 IgG Type-specific Ab - HSV 1, 1.25 (positive); HSV 2 - <0.90

This is what the doctor had to say about my results:

"The HSV IgG that was positive means past infection and therefore will always be positive. It does not give a time frame as to when initial infection was and there is not a way to determine that from blood work.
The HSV IgM was negative which implies to acute/current infection
The HSV PCR was negative which means the virus is not circulating in the blood. That does not mean though that it can't be on the surface with mouth or genital lesions. "

It wasn't difficult knowing I have HSV due to the overwhelming amount of stories of people on this forum who were going through similar problems I was experiencing. 

Despite almost every specialist in my city telling me "you don't have herpes," "this doesn't look like herpes," "I don't see anything," "99% of people have herpes, what's the big deal?," I tested positive.

 

Edited by blurneworder

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rush82

Ive had a similar journey to yours for almost 2.5 years. No classic outbreak but many symptoms. 

Did 4 igg tests. All were neg for hsv2

 3 months post exposure  hsv1  1.3 

6 months hsv1   1.2  

11 months  Negative! wtf  

Kept having symptoms 

1.5 years   hsv1   1.3

 

Also did 3 swabs on spots that were suspicious that came back negative.

Finally did a Western Blot at almost 2 years post exposure that came back indeterminate for 1 and negative for 2...Terri Warren said I should consider myself negative. I still dont know what to think as my life passes me by. I know how fucking frustrating it is to go through that.  

 

Have you done a WB?

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blurneworder
9 minutes ago, rush82 said:

Ive had a similar journey to yours for almost 2.5 years. No classic outbreak but many symptoms. 

Did 4 igg tests. All were neg for hsv2

 3 months post exposure  hsv1  1.3 

6 months hsv1   1.2  

11 months  Negative! wtf  

Kept having symptoms 

1.5 years   hsv1   1.3

 

Also did 3 swabs on spots that were suspicious that came back negative.

Finally did a Western Blot at almost 2 years post exposure that came back indeterminate for 1 and negative for 2...Terri Warren said I should consider myself negative. I still dont know what to think as my life passes me by. I know how fucking frustrating it is to go through that.  

 

Have you done a WB?

I do not get the classic looking outbreaks, but I have a hell of a lot of other symptoms daily. 

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WilsoInAus
4 hours ago, blurneworder said:

For 11 months I've been suffering with symptoms of HSV that many doctors and people on this board have assured me are not herpes. I've had multiple swabs and blood work that all came back negative.

Yesterday I received the news that I am positive for HSV 1.  I don't know where it is on my body, but it's likely I have it orally and genitally based on my ongoing daily symptoms and the initial encounter I had with the girl who gave this to me.

I had blood work done through a Rheumatologist. The three tests I had were:

HSV 1 and/or 2 Abs, IgM by ELISA - NEGATIVE, 0.36

HSV Type 1 and 2 by PCR Group - NOT DETECTED

HSV 1/2 IgG Type-specific Ab - HSV 1, 1.25 (positive); HSV 2 - <0.90

This is what the doctor had to say about my results:

"The HSV IgG that was positive means past infection and therefore will always be positive. It does not give a time frame as to when initial infection was and there is not a way to determine that from blood work.
The HSV IgM was negative which implies to acute/current infection
The HSV PCR was negative which means the virus is not circulating in the blood. That does not mean though that it can't be on the surface with mouth or genital lesions. "

It wasn't difficult knowing I have HSV due to the overwhelming amount of stories of people on this forum who were going through similar problems I was experiencing. 

Despite almost every specialist in my city telling me "you don't have herpes," "this doesn't look like herpes," "I don't see anything," "99% of people have herpes, what's the big deal?," I tested positive.

 

This doctor does not know much about herpes. There is no point doing a PCR test on blood.

The IgG test is so low it confirms nothing. How many tests have you done now? About 1 in 4 tests would be expected to produce such an outcomes for a negative person. If there is HSV-1 within your body it would be an oral infection from your childhood. A Westernblot would assist in working this out.

So no these test results cannot be used to conclude that at all. That is near incompetence. What did he say about about a lack of positive swabs? What did he say about the false positives?

 

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WilsoInAus
3 hours ago, rush82 said:

Ive had a similar journey to yours for almost 2.5 years. No classic outbreak but many symptoms. 

Did 4 igg tests. All were neg for hsv2

 3 months post exposure  hsv1  1.3 

6 months hsv1   1.2  

11 months  Negative! wtf  

Kept having symptoms 

1.5 years   hsv1   1.3

 

Also did 3 swabs on spots that were suspicious that came back negative.

Finally did a Western Blot at almost 2 years post exposure that came back indeterminate for 1 and negative for 2...Terri Warren said I should consider myself negative. I still dont know what to think as my life passes me by. I know how fucking frustrating it is to go through that.  

 

Have you done a WB?

That's a really good example as to testing low positive proving absolutely nothing. I'm sorry there isn't a definitive answer for you. Terri's advice is based on the observed ABVIC experience where they add an extra process layer to the Westernblot to pre filter blood for antibodies of the other type and possibly rogue proteins.  The ABVIC test showed that 95% of indeterminates under Westernblot were in fact negative. 

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Stolo868

Hi bluerneworder. Good to hear that. How do you feel? Will you start antivirals now? It’s better to listen your body than a member with a cold sore. 

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blurneworder
Posted (edited)
6 minutes ago, Stolo868 said:

Hi bluerneworder. Good to hear that. How do you feel? Will you start antivirals now? It’s better to listen your body than a member with a cold sore. 

I feel about the same as before. I sent my results to every doctor who told me I didn't have herpes or that this was all in my head. 

I don't know about antivirals – I don't feel as if I know enough about them. 

I told my ex that she probably caught herpes from me, but she didn't care because HSV is so common.

Edited by blurneworder

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WilsoInAus
11 minutes ago, blurneworder said:

I feel about the same as before. I sent my results to every doctor who told me I didn't have herpes or that this was all in my head. 

I don't know about antivirals – I don't feel as if I know enough about them. 

I told my ex that she probably caught herpes from me, but she didn't care because HSV is so common.

But this doesn't prove you have herpes, not by a long chalk!

You have made it an absolute point to like posts and join in the criticism of blood tests and how unreliable they are owing to false positives and false negatives. You've laughed along at the ridiculous things that doctors have said.

And now all of a sudden, you have a 1.2 result and the incompetent statement "The HSV PCR was negative which means the virus is not circulating in the blood. That does not mean though that it can't be on the surface with mouth or genital lesions." that you have laughed at before - and yet now its serious and proof?

You're all over the place and have a long way to go. If you truly believe that 1.2 confirms a positive then you've got a lot of explaining to do to a lot of members here.

Get back to the doctors and find out what is going on with you. You don't accept this little but of hocus pocus as proof and give up the fight.(You never have before so why would you now?)

Are you not made of sterner stuff than this?

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blurneworder
Posted (edited)
57 minutes ago, WilsoInAus said:

But this doesn't prove you have herpes, not by a long chalk!

You have made it an absolute point to like posts and join in the criticism of blood tests and how unreliable they are owing to false positives and false negatives. You've laughed along at the ridiculous things that doctors have said.

And now all of a sudden, you have a 1.2 result and the incompetent statement "The HSV PCR was negative which means the virus is not circulating in the blood. That does not mean though that it can't be on the surface with mouth or genital lesions." that you have laughed at before - and yet now its serious and proof?

You're all over the place and have a long way to go. If you truly believe that 1.2 confirms a positive then you've got a lot of explaining to do to a lot of members here.

Get back to the doctors and find out what is going on with you. You don't accept this little but of hocus pocus as proof and give up the fight.(You never have before so why would you now?)

Are you not made of sterner stuff than this?

Unreliable because I believe false negatives happen more than false positives. I still want to get swabs of suspect areas.

My doctors only believe the test results. I've been treated for everything they think I have, and it hasn't worked. The Urologist I see had this to say:

HSV-1 is typically associated with oral herpes, which is manifest as cold sores in the mouth. It can be transmitted to the genitalia, however, just as HSV-2 can be transmitted from the genitalia to the mouth.

That said, your tests only indicate that you have been exposed to HSV-1 at some point in your life, which is why you have circulating IgG. However, this is not not overly specific, nor is is particularly surprising, as 87-92% of adults will test positive for HSV-1 IgG, indicating that exposure to this virus is nearly ubiquitous.

IgM testing is not a reliable indicator of active infection, as IgM levels are not always elevated in the setting of acute infection.

The PCR being negative indicates a very low likelihood of an active infection, and the sensitivity is such that it would be very unlikely you'd have a false negative. The gold-standard confirmatory test would be to scrape one of the lesions when they crop up and check them directly for the virus. This would be done by a dermatologist.

Though you should proceed with caution with respect to sexual activity when there is a suspicion of herpes, I do not think your lesions are consistent with herpes in that they wax and wane too quickly, and they do not have a typical appearance and evolution of herpetic lesions; these labs also render the likelihood of there being an active herpes infection very low, though I agree it does not eliminate the possibility altogether.

Edited by blurneworder

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WilsoInAus

@blurneworder if you believe in false negatives then you must believe in also positives.

As you well know this test result does NOT prove:

- that you have HSV-1;

- that it is genital in location; and

- that it is causing the symptoms genitally that you describe.

What you choose to believe and what you choose to do are up to you. 

However the result does not prove the three things I have mentioned above. Never had and never will.

 

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blurneworder
1 minute ago, WilsoInAus said:

@blurneworder if you believe in false negatives then you must believe in also positives.

As you well know this test result does NOT prove:

- that you have HSV-1;

- that it is genital in location; and

- that it is causing the symptoms genitally that you describe.

What you choose to believe and what you choose to do are up to you. 

However the result does not prove the three things I have mentioned above. Never had and never will.

 

I have symptoms orally and genitally that started after unprotected oral and vaginal sex. I'm not sure what other way you want me to view this.

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WilsoInAus
13 minutes ago, blurneworder said:

I have symptoms orally and genitally that started after unprotected oral and vaginal sex. I'm not sure what other way you want me to view this.

It doesn’t matter how you look at it, you have to choose.

I’m simply telling what is established as proof and what isn’t. They’re simply facts. You have to take responsibility for yourself. If you believe it’s herpes and treat it as such, you have to have the courage to do that.

I’ve also shown you evidence that false positives happen way more than false negatives for recent infections. Again you are free to choose a different belief. 

I would think more swans are not needed, of all the swabs you’ve had, no HSV has been detected. For your peace of mind though, it’s probably a good idea.

Why not the Westernblot?

 

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Mikeike3

I'm back. I had to make a new account. The mods here are jackass and ignoring me in my requests to recover my account. 

January wb negative. Done 5 dna swabs since, all negative 

Lip keeps getting prodrome and pimple looking pustules on the lip line. I get them every two weeks. 

I have nerve pain in my genital and thigh region daily. It waxes and wanes. Definitely pudendal neuralgia. 

Just did my second wb last Monday. Results any day now. 

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Mikeike3

This western blot is going to blow you away. You'll be apologizing for years. 

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WilsoInAus

@Mikeike3 but will it tell you what you want to know or want to hear? We don’t need to know the results, only you will truly know them.

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blurneworder
4 hours ago, Mikeike3 said:

I'm back. I had to make a new account. The mods here are jackass and ignoring me in my requests to recover my account. 

January wb negative. Done 5 dna swabs since, all negative 

Lip keeps getting prodrome and pimple looking pustules on the lip line. I get them every two weeks. 

I have nerve pain in my genital and thigh region daily. It waxes and wanes. Definitely pudendal neuralgia. 

Just did my second wb last Monday. Results any day now. 

Are those pimple-like spots just below the surface or are they prominent like a pimple normally is?

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blurneworder

Second IGG blood test results came back last week — still positive for HSV 1. That is two positive results in one month.

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blurneworder

Saw my Neurologist for a follow up to find out test results. The good news is that I don't have nerve damage, but the bad news is that my Neurologist said he sees patients who have HSV who have the same problems I have with my nerves. That includes tingling in my buttocks, arms, feet, legs, and the worst of all, my head.

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Cas9
1 hour ago, blurneworder said:

Saw my Neurologist for a follow up to find out test results. The good news is that I don't have nerve damage, but the bad news is that my Neurologist said he sees patients who have HSV who have the same problems I have with my nerves. That includes tingling in my buttocks, arms, feet, legs, and the worst of all, my head.

i would have asked the doctor:

1. How many patients have you seen that have confirmed ghsv with my exact symptoms?
2. Have you seen any patients with my exact symptoms that did not have ghsv?
3. Do you believe that ghsv can cause tingling in my head and if so, what would be the biological basis for a virus harboring in the DRG, to cause this tingling?

These are legitimate questions I would have asked.

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blurneworder
Posted (edited)
14 minutes ago, Cas9 said:

i would have asked the doctor:

1. How many patients have you seen that have confirmed ghsv with my exact symptoms?
2. Have you seen any patients with my exact symptoms that did not have ghsv?
3. Do you believe that ghsv can cause tingling in my head and if so, what would be the biological basis for a virus harboring in the DRG, to cause this tingling?

These are legitimate questions I would have asked.

I can follow up -- thank you for the suggested questions.

It's not clear where I have HSV, but I have symptoms suggestive of oral and genital. 

 

What does DRG stand for?

Edited by blurneworder

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Cas9
Posted (edited)
12 minutes ago, blurneworder said:

I can follow up -- thank you for the suggested questions.

It's not clear where I have HSV, but I have symptoms suggestive of oral and genital. 

 

What does DRG stand for?

DRG stands for Dorsal Root Ganglion. It is the nerve bundle at the base of the spine, and is where the virus harbors when you get genital herpes.

Edited by Cas9

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WilsoInAus
41 minutes ago, blurneworder said:

I can follow up -- thank you for the suggested questions.

It's not clear where I have HSV, but I have symptoms suggestive of oral and genital. 

 

What does DRG stand for?

Here is another suggested question for the doctor to think about:

By what mechanism can you be infected by a person who swabs negative and has negative IgG blood tests?

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blurneworder

I see Wilso has chimed in, but I can't read his post since I have him blocked. I'm guessing he is saying I don't have herpes.

 

4 hours ago, blurneworder said:

Second IGG blood test results came back last week — still positive for HSV 1. That is two positive results in one month.

 

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