Ghsv1 after years of coldsores, experts changing their views

[someguysdo]

Hello everyone, this is in response to sillybrains posts in the newly diagnosed forum and her post on Terri Warren website.Sillybrain has swab tested positive for ghsv1 after many years of cold sores she acquired as a child.This blows a major hole in all the misinformation that is doled out by the experts over the years about immunity to infection in a different location after years of oral herpes.I myself have been told not to worry about my atypical genital symptoms because of my history of cold sores. I have literally been told that it can't be ghsv1 because my cold sore history would make it a non factor!! BAD advice.If you go to Terri Warrens site you will see her responses to silly brain's posts.How many of us have been told to dismiss our symptoms and go on with our sex lives, possibly infecting others? I think this is BIG because if you read Terri's site you will see that her and Dr. Anna Wold are now completely reconsidering their position on this.

[Guy12]

Some guys.  Anyone who speaks in definites w/regards to HSV is in my opinion practicing wishful thinking.  I feel I've met or found more people in my searches who are struggling for a diagnosis, test negative and continually battle ongoing symptoms that simply cannot be pelvic floor tightening or their imaginations   I've always had a sound mind and know my body  I make a living having to know symptoms nerves etc...so when I hear folks state things in absolutes it is disheartening...

If 80% of people with herpes  don't know they have it...then why is it so far fetched to believe that people who continually have prodromal type symptoms but not classic lesions are truly infected?

[Sillybrain]

Hello, yep this is what I am struggling with, the fact I have been told by several experts, including th dr I went to that I was immune, it's hard to comprehend I am here, dealing with this.

i have read so many bits of advice on line where they have said the risk is so minimal and you can't pass it on etc, it's quite scary.

im sad about it all really 

[someguysdo]

Silly and guy12, yes I agree about vague symptoms being blown off because that's exactly what I've been dealing with! You don't have to be a rocket scientist to figure out there's a lot of grey areas with this and I really don't understand why the quote experts dismiss us so much. To me they seem to talk out of both sides of their mouth. And frankly as far as Terry's response to the silly brains post seems to me there's a good bit of backpedaling and cya going on from her at the moment, just my opinion.

[Guy12]

Silly you might look at bob12's ongoing saga post....he had many negative IgG's, negative WB and still swabbed positive 11.5 mos post exposure...he said now he doesn't hardly feel a thing...regardless of everything you can't change what happened and I can understand your sadness...however the consensus is GHSV1 is tough (if that) the first year or two than typically fades (probably to the point you'll think less of it then you do your oral hsv1).  You're no different than you were before this...you have hsv1....I think the hardest thing is there is a stigma associated with the genitals however it is the same thing...cold sores...many people who think they only have oral hsv1 probably also have it genitally and write it off as yeast infections, uti's, etc...

no sweat silly as you are the same person.

 

[Guy12]

I once saw Terri tell someone on her forum when they asked if having unprotected vaginal sex with someone for 10 minutes was high risk for hsv...and she said no it was not   Are you kidding me???  The only time she lets on to someone that they have herpes or speaks to them as if they do is if they come out up front and say I have herpes and....

I feel there are people on this board who know more about herpes than any doctor...if something isn't classic in presentation or what they saw in a textbook 15 years ago then they dismiss it...there is also a reason the herpes blood tests aren't done typically on std panels.. just my thoughts...silly i'm praying for you...some guys i'm praying for you...is hsv1 genitally the end of the world..no..it WILL get better in time

Your story Silly does mean that hsv1 can come in different "strains"....i imagine like the influenza virus...why aren't these things studied...why it is assumed that hsv1 is the same worldwide...i don't know and don't think anyone does....

Edited September 13, 2015 by Guy12

[Sanguine108]

I once saw Terri tell someone on her forum when they asked if having unprotected vaginal sex with someone for 10 minutes was high risk for hsv...and she said no it was not   Are you kidding me???  The only time she lets on to someone that they have herpes or speaks to them as if they do is if they come out up front and say I have herpes and....

Yeah, it's funny how much weight people put on "experts".  But hey, it's hard when one is feeling sick and overwhelmed with mental and physical discomfort.   I have a few medical doctor friends and one, who is going through his own health issues at his age, has seen over a dozen different practitioners to get different opinions.  He found someone who didn't just regurgitate the typical talk but it took a while.  He is making significant progress now.

I think this is an important consideration for any being on the path to wellness.  Just because someone has an MD next to their name doesn't make them the gospel of healing truth.  Just because anyone is a "health care provider" doesn't make them the gospel of healing truth.  But if "You" find the right right practitioner for you then significant progress will be made.

[sickornotsick]

About the comment about different hsv1 strains, i would love to learn more about that. I've had negative IGG tests 1,2,5,11 months but i have a positive western blot at the 6 month mark which i wonder if i have a strain that the igg doesnt pick up? See Terri Warren's comment about different strains: www.medhelp.org/posts/Herpes/HSV-1---multiple-strains/show/1474460

At any rate, just trying to resume life in a post-hsv body. Yesterday felt shifty, today a lot better. Let's see what tomorrow brings. 

 

 

 

[Sillybrain]

Yea I have no idea what to say about any of it, it is all so confusing. Coz nothing of my situation adds up, nothing at all! I think that's why im am finding it so hard to make sense of any of it!

I had a reswab a few days after the initial one just because nothing adds up and after being told false positive swabs can happen, I thought I have nothing to lose really. 

If the second swab is positive, I'm no worse off than I am already. 

We shall wait and see. 

[Sillybrain]

Second swab was neg. 

not sure which way to go with this.

i know all the info points to the pos tests being accurate but after being told they can be false, I'm slightly stumped.

the dr said if it is neg can only wait until something comes up again to confirm either way.

spose I'm in denial. 

blah! So I guess I can live in limbo land a bit of yea I have it and a bit of no I don't have it.

[Guy12]

Sick how's your symptoms?  6 mos. to show +?  Wow.  Why do these "experts" keep telling everyone that by 12 and 16 weeks if your IgG tests are negative you are negative.  That I feel plays a role in why things like H are spreading.  

[sickornotsick]

Because I don't test positive even now via IGG. Only Western Blot. I most likely had antibodies at 4 months. Terri said IGG is more sensitive for HSV2 vs 1, 97 accuracy vs 90. So yeah. Things could be better but not bad. Severity is down but still lots of symptoms. Starting getting to do sports again and trying to resume life as best as I can. Hopefully it will continue the upward trend. 

[Guy12]

Sick did you have a "classic" 1st OB?  It was bad enough to the point you couldn't play sports?  What symptoms did you deal with that first year if you don't mind sharing?  Are you on anti virals or have you been.  Do they help at all?  Do you take any lysine or neurontin?

Edited September 16, 2015 by Guy12

[zzzqzzz]

I think that the reaction to sillybrain's story is pretty over the top.  If you read Terri Warren's questions forum, she always says something to the tune of "if you have oral HSV1, then it is highly unlikely that you will acquire HSV1 in a new location."  Key words are "highly unlikely"... Nothing is ever for sure in the medical world, and immunity to viruses (even those for which vaccines exist) is never 100%.

 

There are people who have HSV1 in both locations, there is no question about it.  But, I think it is seriously twisted to assume that the existence of these folks somehow negates the advice of a clinician who has specialized in herpes for 33 years. 

[someguysdo]

I think that the reaction to sillybrain's story is pretty over the top.  If you read Terri Warren's questions forum, she always says something to the tune of "if you have oral HSV1, then it is highly unlikely that you will acquire HSV1 in a new location."  Key words are "highly unlikely"... Nothing is ever for sure in the medical world, and immunity to viruses (even those for which vaccines exist) is never 100%.

 

There are people who have HSV1 in both locations, there is no question about it.  But, I think it is seriously twisted to assume that the existence of these folks somehow negates the advice of a clinician who has specialized in herpes for 33 years. 

Not True. Terri often speaks in abdolutes about the risk of ghsv1 after an established ohsv1 history.Her response to anxiety10 on her forum dated sept1 2015 states that previous oral hsv1 (would protect you) she doesn't say it will offer SOME protection.Her response to silly brain on her forum dated Sept. 1 first says Virtual immunity, but then says you CAN'T catch what you already have. There are numerous other cants, wonts, etc .on her forum with regard to this issue and the same goes for HHH.This is why I said they talk out of both sides of their mouths.They should NEVER use words such as can't, or won't or ,immunity (partial immunity would be accurate) with regards to this issue.

[bob12]

I agree, all of the experts on MedHelp talk in absolutes and dismiss almost everyone except for someone with a known positive test.  Does that really help people?  Could it really be considered the opposite of help if people are truly positive?  I was basically ridiculed by the experts for 11.5 months and told to seek therapy.  Would that have helped me as my symptoms continued for years or would it have been more helpful to help me explore possible scenarios?

Sickornotsick, it's worth noting that the 90% accuracy for the IgG is compared to Western blot, and I know firsthand that Western blot is not foolproof either.  What is the accuracy compared to known swab cases?  No one knows and Anna Wald, who I consider a real expert, says the Western blot isn't perfect, but it's the best they have.

Terri is a good person and she just wants to help people.  It doesn't appear like she reads a lot of studies and much of her experience is formed from her own personal experiences, which as we all know, can be rather dismissive.  If you dismiss potentially positive cases because it doesn't fit your mold, can you really say you have definitive knowledge?  She also gives that stupid Western blot way too much credit and I feel that harms more people than it helps.  The Western blot is a diagnostic tool to be taken with context, not the smoking gun regardless of any other symptoms.

I've often said I think you can catch HSV1 in different locations.  The difference is you may not even notice because primary infection is so terrible, but secondary infections are way less severe due to your body already having antibodies.  Does Terri really believe the virus will get killed instantly at your skin in a new location?  If you have any doubt about this, read about the outbreaks of herpes gladiatorum (HSV1 on the trunk of the body) at wrestling meets. 60-80% of the population is seropositive for HSV1, yet all these wrestlers must be HSV1- and get herpes gladiatorum?  It doesn't take a math major to realize those numbers are highly improbable.

I had all the unlikely scenarios happen to me.  I caught HSV1 from one-time genital only sex.  I was negative by IgG.  I was negative by Western blot.  It took 21 days post-exposure to see anything physical.  I had red spots that never became blisters or lesions or scabbed over.  Everything in my case was "highly unlikely".  Studies show true herpes cases are misdiagnosed over 50% of the time.  80% of people with herpes don't even know they have it.  How can anyone talk in absolutes when it comes to herpes?

 

Edited September 30, 2015 by bob12

[bob12]

One thing that Terri said though sort of resonates with me and I want you to think about it.  I'm paraphrasing now, she told me that, compared to HSV2, HSV1 is really a non-issue and that's one of the reasons they tell people to go on living their life.  It makes you wonder if their outlook will change as they find out more about HSV1?  You would almost hate for that to happen.  As much as GHSV1 sucks for us, do we really want it to have the same stigma as HSV2 when 80% of the population has HSV1 and doesn't even know it?  In a way it has the same stigma already, but it also doesn't.

Edited September 30, 2015 by bob12

[Sillybrain2]

@bob12 I tried to send you a msg but it is saying you can't receive them??

[bob12]

Hey, on the site or to email?  I think I got your email, let me check.

EDIT: Ugh, I'm using 320% of my storage, is there any easy way to clear out messages in the inbox?

Edited September 30, 2015 by bob12

[Guy12]

Bob good to have you back!  I'm taking the WB again in one month 7+ post exposure but probably be negative.  No classic OB yet but newest symptom is px under L armpit, wicked sore throat that is helped via lysine, fever that comes and goes quickly and red spots popping up all over.  The penile head redness and irritation is more intermittent but easily stirred up. 

 

Starting to to wonder if EBV/mono is coming out of dormancy?  I did test + for that at 4.4 on IgG.  

Bob look up TheBoz posts on the redness being a type of interface dermatitis rxn to a viral/bacterial pathogen.  A type of autoimmune rxn by T cells. 

 

Since ive ive started taking low dose Naltrexone and very small dose of gabapentin my symptoms have lessened a small degree... 

"Killin It" in limbo land here!!

[VVK]

Hello everyone, this is in response to sillybrains posts in the newly diagnosed forum and her post on Terri Warren website.Sillybrain has swab tested positive for ghsv1 after many years of cold sores she acquired as a child.This blows a major hole in all the misinformation that is doled out by the experts over the years about immunity to infection in a different location after years of oral herpes.I myself have been told not to worry about my atypical genital symptoms because of my history of cold sores. I have literally been told that it can't be ghsv1 because my cold sore history would make it a non factor!! BAD advice.If you go to Terri Warrens site you will see her responses to silly brain's posts.How many of us have been told to dismiss our symptoms and go on with our sex lives, possibly infecting others? I think this is BIG because if you read Terri's site you will see that her and Dr. Anna Wold are now completely reconsidering their position on this.

If one in a million people managed to somehow autoinoculate a long-standing cold sore infection into their genital region, would that make it worthwhile for 999'999 people to live in fear because they "might" be able to do the same thing? Even though it isn't proven that the 1/100'000'000 didn't autoinoculate at the onset of the cold sore infection, thus having long-standing genital and oral infection that just hasn't materialized into a genital outbreak? Even though testing isn't always accurate - including swab and blood tests?

[someguysdo]

 

If one in a million people managed to somehow autoinoculate a long-standing cold sore infection into their genital region, would that make it worthwhile for 999'999 people to live in fear because they "might" be able to do the same thing? Even though it isn't proven that the 1/100'000'000 didn't autoinoculate at the onset of the cold sore infection, thus having long-standing genital and oral infection that just hasn't materialized into a genital outbreak? Even though testing isn't always accurate - including swab and blood tests?

One in a million!! Pretty arbitrary number dont you think?Where in the world did you get that from?If you pay any attention to some of the post on here such as what Bob 12 wrote about the herpes gladitorium then you'd see the possibility for you to be vastly underestimating this. You really don't have any grounds at all for saying one in a million!

 

 

 

[VVK]

Okay, 1 in 100'000'000 is an arbitrary number meant as an example, but you're not answering any of my questions. You know that the likelihood of transmission is low (<1%) in the absence of symptoms. This goes for HSV1 and HSV2. The likelihood of autoinoculation with a functional immune system are dramatically smaller than 1%. I wouldn't be surprised if the actual statistic would end up being 1 in 100'000'000 for normal conditions.

Bob's mention of herpes gladiatorum can be easily explained in that 60-80% of the general population is seropositive for HSV-1 but:

1. the age-specific distribution of those who are infected is not consistently 60-80%; in fact, in the younger ages as few as 0-20% are seropositive

2. not all cases of herpes gladiatorum are from HSV-1

3. wrestling involves a lot of rubbing, friction, and abrasions

When all three (not just any one) of these factors are put together in wrestling, there's a higher risk of transmission.

 

[Sillybrain2]

Maybe I should buy a lotto ticket then given how I am that 1 in 100000000, I must be a lucky person  not!

i just got off the phone to the nurse at the sexual health clinic I was tested at and she thinks that given my situation and history, the test was a false positive. Ummm yea, I duno what to think any more Lolol although she has been the only helpful person so far who actually listened to what I had to say!

Edited October 1, 2015 by Sillybrain2

[someguysdo]

Okay, 1 in 100'000'000 is an arbitrary number meant as an example, but you're not answering any of my questions. You know that the likelihood of transmission is low (<1%) in the absence of symptoms. This goes for HSV1 and HSV2. The likelihood of autoinoculation with a functional immune system are dramatically smaller than 1%. I wouldn't be surprised if the actual statistic would end up being 1 in 100'000'000 for normal conditions.

Bob's mention of herpes gladiatorum can be easily explained in that 60-80% of the general population is seropositive for HSV-1 but:

1. the age-specific distribution of those who are infected is not consistently 60-80%; in fact, in the younger ages as few as 0-20% are seropositive

2. not all cases of herpes gladiatorum are from HSV-1

3. wrestling involves a lot of rubbing, friction, and abrasions

When all three (not just any one) of these factors are put together in wrestling, there's a higher risk of transmission.

 

Well as far as the herpes gladitorium http://www.cdc.gov/mmwr/preview/mmwrhtml/00001552.htm.I may not have entered this correctly as a link but if you go to this link you will see that in 1989 in Minnesota wrestling camp a confirmed HSV1 gladitorium outbreak occured. 22 percent of the wrestlers who became infected reported already having previous oral coldsores. I am not saying that contracting GHSV1 after longstanding OHSV1 is the norm, however 22% is an awful high number. I really doubt that this occurs nearly as infrequently as you are suggesting.Actually I just reread the info at that link. It was 24% of the wrestlers infected had previous oral hsv! and 38% reported no previous OHSV1. I guess the remaining people were unsure?And yes wrestling does involve lots of friction, but it is on tougher skin and our mucous membranes dont require nearly as much friction to pass the virus.

Edited October 1, 2015 by someguysdo
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