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ms67901

Is HSV-2 drastically under reported?

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ms67901

Going thru my own HSV-2 drama where my wife found out she tested positive on a random screening. However she is asymptomatic for the 3 1/2-4 years we have know each other. 

A test she didnt ask for has somewhat changed our lives. 

So it would reason that there is a large percentage of the population that is asymptomatic who never even think to get tested. 

And thats part of the stigma we think a smaller portion of the population has HSV-2 when it could be much much larger.

 

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WilsoInAus

@ms67901 it isn't likely to be under-reported. 

In the US for example, the population proportion is estimated from a stratified random sample with the NHANES study. There is a sophisticated selection process for NHANES participants that ensures a good population estimate. There is only a small bias in that homeless and incarcerated persons are not in the study (~1.2% of the population).

A small report is here: https://www.cdc.gov/nchs/data/databriefs/db304.pdf

This will include people just like your wife who have never tested previously and may learn they are positive, if they choose to receive their results.

It is interesting to reflect on your situation, it is one of the reasons why the recommendation is not to blood test as part of a routine screening, just when symptoms present and diagnosis needed. Would you support that or otherwise?

Edited by WilsoInAus

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ms67901

Entirely. The people with HSV1 who never get cold sores or very seldomly do could care less that they have it. 

People like me who get them like clockwork around certain dates of the year....we remove ourselves from society while presenting symptoms. 

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Whymewhyus?

It doesn't help when you work in a clinic where people come in and ask to be tested for many reasons and every single time someone asks to be tested the doctors refuse unless u have a visible blister. 

All the doctors tell patients the same thing it's not a big deal. I have herd doctors tell patients that no one cares if you positive or not. It's not true people do care and people have the right to know because it is a big deal to many people don't want to pass this virus on.

 

Last month we had a female come in 4days in a row and was seen by 3 doctors. She wanted a simple blood test because her husband committed suicide and left a letter that said I pray when I go to bed I pray when I wake up that today will be the day you will allow me and so many others to live free again from this virus I feel myself getting weak by the minute. I thank you for allowing me to gain hope and strength at times and I have watched so many great things happen in the past 3 years that only lead to false hope. Today I wake up weaker then the day before and the day before that and today I need to end the pain and suffering and tingling I feel....

The letter that he left was 5 pages long. 

I was able to send this lady to another clinic where I had went but it was a fight and she was able to fight and get a blood test she confirmed what she had thought all along that she was hsv positive. I gave her my personal cell # and she will msg me and ask questions or when she just needs support. 

It makes no sense that we need to fight for any test, we pay for healthcare in our taxes and when people ask for the blood test it should allowed without a visible sore. 

 

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tayelle
On 12/6/2018 at 9:29 AM, Whymewhyus? said:

It doesn't help when you work in a clinic where people come in and ask to be tested for many reasons and every single time someone asks to be tested the doctors refuse unless u have a visible blister. 

All the doctors tell patients the same thing it's not a big deal. I have herd doctors tell patients that no one cares if you positive or not. It's not true people do care and people have the right to know because it is a big deal to many people don't want to pass this virus on.

 

Last month we had a female come in 4days in a row and was seen by 3 doctors. She wanted a simple blood test because her husband committed suicide and left a letter that said I pray when I go to bed I pray when I wake up that today will be the day you will allow me and so many others to live free again from this virus I feel myself getting weak by the minute. I thank you for allowing me to gain hope and strength at times and I have watched so many great things happen in the past 3 years that only lead to false hope. Today I wake up weaker then the day before and the day before that and today I need to end the pain and suffering and tingling I feel....

The letter that he left was 5 pages long. 

I was able to send this lady to another clinic where I had went but it was a fight and she was able to fight and get a blood test she confirmed what she had thought all along that she was hsv positive. I gave her my personal cell # and she will msg me and ask questions or when she just needs support. 

It makes no sense that we need to fight for any test, we pay for healthcare in our taxes and when people ask for the blood test it should allowed without a visible sore. 

 

Wow this is very sad that this man committed suicide from hsv. We've all been there with depressive states. I think the numbers are accurate...no more than 15% have hsv2. Every forum I join, its low numbers compared to other diseases. 

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Whymewhyus?

Yes it is very sad. Some people are not able to get over the depression! 

I see people come into the office everyday I work and it's so sad to see how many people ask to be tested and they get refused by all the doctors that I have worked with unless they have a sore that can be tested.

I truly believe the # of people living with hsv 1/2 are much much higher than they think and I only say that cause of the amount of people that come in just to be tested for hsv.

I also think it's really sad that the government still pays for that visit and the patients leave with more ?'s instead of getting answers.

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Lulupazoola

Thank u for your illuminating post.  Its so much worse than i imagined.  All my life, Ive felt like Ive had fairly decent medical care.  With the exception of herpes.  My doctors have never offered a test.  They dont want to deal with it.  They have nothing to offer.  And they dont even have correct information.  I dont feel "counted" in the official numbers of herpes sufferers.  I dont think they have the correct information either, since the official word is all about the lesions and not about the sickness and debilitation that u go thru.  I wonder how many herpes sufferers lose work from it?

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blurneworder
4 hours ago, Lulupazoola said:

Thank u for your illuminating post.  Its so much worse than i imagined.  All my life, Ive felt like Ive had fairly decent medical care.  With the exception of herpes.  My doctors have never offered a test.  They dont want to deal with it.  They have nothing to offer.  And they dont even have correct information.  I dont feel "counted" in the official numbers of herpes sufferers.  I dont think they have the correct information either, since the official word is all about the lesions and not about the sickness and debilitation that u go thru.  I wonder how many herpes sufferers lose work from it?

Sounds like when a doctor told me that 99% of people have herpes and it’s no big deal 

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Newone2
On 12/12/2018 at 1:18 AM, blurneworder said:

Sounds like when a doctor told me that 99% of people have herpes and it’s no big deal 

My doctor said the same thing to me. I said “Really? Do you also have hsv?” He said no and I replied with “How the FU#K would you know then!?” I’ve since changed my primary care. I feel like part of the reason I caught this is because of the crappy advice he gave me about this virus in the first place. It’s almost like doctors  encourage you to get it. 

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Newone2
On 12/6/2018 at 9:29 AM, Whymewhyus? said:

It doesn't help when you work in a clinic where people come in and ask to be tested for many reasons and every single time someone asks to be tested the doctors refuse unless u have a visible blister. 

All the doctors tell patients the same thing it's not a big deal. I have herd doctors tell patients that no one cares if you positive or not. It's not true people do care and people have the right to know because it is a big deal to many people don't want to pass this virus on.

 

Last month we had a female come in 4days in a row and was seen by 3 doctors. She wanted a simple blood test because her husband committed suicide and left a letter that said I pray when I go to bed I pray when I wake up that today will be the day you will allow me and so many others to live free again from this virus I feel myself getting weak by the minute. I thank you for allowing me to gain hope and strength at times and I have watched so many great things happen in the past 3 years that only lead to false hope. Today I wake up weaker then the day before and the day before that and today I need to end the pain and suffering and tingling I feel....

The letter that he left was 5 pages long. 

I was able to send this lady to another clinic where I had went but it was a fight and she was able to fight and get a blood test she confirmed what she had thought all along that she was hsv positive. I gave her my personal cell # and she will msg me and ask questions or when she just needs support. 

It makes no sense that we need to fight for any test, we pay for healthcare in our taxes and when people ask for the blood test it should allowed without a visible sore. 

 

It’s stories such as this that need media coverage. Instead all of our pain, suffering, and loss of self worth get pushed aside by the “it’s no big deal” notion maybe a few stories like this one would be enough to get some attention brought to this subject. It may not be a life ending condition but it sure as hell is life altering in a MAJOR way. People literally kill  themselves due to this disease and I feel like in the eyes of the medical industry it’s nothing more then a joke. How many suicides a year do you think are caused by hsv diagnosis? I tried to look it up and no matter how much I searched I couldn’t find a statistic for it. When something like that happens people usually just  chalk it up to depression or personal troubles. Maybe hsv also had a hand in it. Who knows? I know HIV and cancer or any fatial disease for that matter are going to take precedence over hsv but I definitely feel the amount of people affected by this utterly useless evil virus warrants more attention. If 80% of the population really do carry this then it’s a pandemic and should be treated as such. It’s been around long enough.

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Whymewhyus?

I agree with you.

I see it everyday I go to work. The doctors don't care and they refuse to test every person who asks for the blood test. If you have something we can swab then u can get tested.

I feel like the only way doctors will start to take hsv seriously is if people who have it come in to get tested and doctor refuses. That person goes out and infects someone else and that person takes that doctor to court. If people do this then it would get more attention then it does. 

I kinda wish I didn't push for the testing cause I would have been more than happy to take all the doctors who refused to test me to court.

I also think they need to investigate the amount of times the government is billed for the people who are refused. I have seen a billing for hsv go into the system for HIV testing. I have reported this and nothings happened. 

 

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