Jump to content
World's Largest Herpes Support Group


fallin

Atypical Symptoms. Let’s compile a list.

Recommended Posts

Muscha
Posted (edited)
31 minutes ago, WSX said:

Lol, right. Fuck this guy.

Hey @WSX.  Keep up the good works.  The F-Bomb record is within reach.  The truth for you not so much right now.  Clouded and jaded you are.

Edited by Muscha

Share this post


Link to post
Share on other sites
WilsoInAus
17 minutes ago, WSX said:

Lol, right. Fuck this guy.

A totally immature response to show that the message is not yet getting through, alas we will not give up, there is too much at stake.

@WSX you have been provided with multiple examples of people who have gone on to identify so termed 'atypical' herpes symptoms as potentially life threatening illnesses to address. Yet you chide them with ongoing ignorance and closed mindedness in a veil of a herpes theory that has the substance of micron tissue.

And then when someone like @Ohsotired2 is starting to take tepid steps away from their herpes theory, where there is a wonderful woman, their marriage and a child at stake - you drag them back to the abyss, poke them eye then shove them into the flames and snicker like an imp.

It is disgraceful, inhuman behaviour. When is it going to stop? How much is enough for you?

How much suffering and damage to their relationship does @Ohsotired2 and her child need to experience with a HSV-2 theory? How many cancers that go undiagnosed owing to herpes theory will be enough for you? How many ruined relationships owing to herpes theory are enough for you? How much pain and suffering and lost life opportunities owing to herpes theory will be enough for you?

How much evil will be enough for you to see that the alternative of a little love and a little light that you can shine into another's life through helping them UNBELIEVE their herpes theory is perhaps the greatest kindness and value you may ever achieve in your life?

Share this post


Link to post
Share on other sites
WSX
Posted (edited)
16 hours ago, WilsoInAus said:

A totally immature response to show that the message is not yet getting through, alas we will not give up, there is too much at stake.

@WSX you have been provided with multiple examples of people who have gone on to identify so termed 'atypical' herpes symptoms as potentially life threatening illnesses to address. Yet you chide them with ongoing ignorance and closed mindedness in a veil of a herpes theory that has the substance of micron tissue.

And then when someone like @Ohsotired2 is starting to take tepid steps away from their herpes theory, where there is a wonderful woman, their marriage and a child at stake - you drag them back to the abyss, poke them eye then shove them into the flames and snicker like an imp.

It is disgraceful, inhuman behaviour. When is it going to stop? How much is enough for you?

How much suffering and damage to their relationship does @Ohsotired2 and her child need to experience with a HSV-2 theory? How many cancers that go undiagnosed owing to herpes theory will be enough for you? How many ruined relationships owing to herpes theory are enough for you? How much pain and suffering and lost life opportunities owing to herpes theory will be enough for you?

How much evil will be enough for you to see that the alternative of a little love and a little light that you can shine into another's life through helping them UNBELIEVE their herpes theory is perhaps the greatest kindness and value you may ever achieve in your life?

Stop trying to speaking on behalf of @Ohsotired

I am very sure her medical doctors with years of schooling know more than you, a person with no years of medical schooling or published papers about herpes. She continually tells you to shut up and stop making up shit about her, yet you persist. You are a creep.

Edited by WSX

Share this post


Link to post
Share on other sites
Muscha
29 minutes ago, WSX said:

Stop trying to speaking on behalf of @Ohsotired

I am very sure her medical doctors with years of schooling know more than you, a person with no years of medical schooling or published papers about herpes. She continually tells you to shut up and stop making up shit about her, yet you persist. You are a creep.

I dont think he is the one making stuff up. 

Share this post


Link to post
Share on other sites
WilsoInAus
30 minutes ago, WSX said:

Stop trying to speaking on behalf of @Ohsotired

I am very sure her medical doctors with years of schooling know more than you, a person with no years of medical schooling or published papers about herpes. She continually tells you to shut up and stop making up shit about her, yet you persist. You are a creep.

How much is enough?

Ask yourself “what can I do for my fellow man.” 

Share this post


Link to post
Share on other sites
Runner278
On 7/26/2020 at 9:44 AM, Runner278 said:

I am still pretty early in my journey but getting closer to some answers. 
- had sex with GHSV2 positive female on 12/26/19. She had it for 14 months. She was on suppressive and I used a condom. She had had only one outbreak in April of 2019. She has been OHSV1 positive for many years, as have I. 

- I was on suppressive for OHSV1 as I was going through a lot of stress and didn’t want a cold sore. I’ve learned that that doesn’t protect you, but does impact seroconversion. 
- got flu-like symptoms 3 days later. Chills, fever and fatigue. 
- irritation of penis that I believe was urethritis which lasted for several weeks. 
- itchy from the waist down for several months. 
- pain in Genital area on and off

- small bumps intermittently uniformly all over head of penis that would come and go quickly

- pain in foreskin between head and circumcision scar. No rash so I think it is nerve related. It’s consistently in the same spot and is on my left side which is where most of my issue exist. I feel this everyday and I have for months  

- nerve pain in lower back and butt which started about 2 months in and continues to this day (4-5 months) 
- discomfort is anus ongoing. Feels like I didn’t completely clean after bowel movement, but I know I have as I use wet wipes. 
- twitching in left leg muscles which began when nerve pain started

- had a cut/sore on my butt about 6 weeks ago while I was off of suppressive that happened while I was playing golf. Not sure if it was an H lesion or I cut myself. Had it swabbed 4 days later and it was negative. Maybe too late but dr said he didn’t think it look herpetic. By the time I found it it was an open sore. I don’t know if it blistered or not. It was about the size of an eraser head and only a single sore. 
- have single pimples at various places all over my body. Haven’t had any swabbed. More than usual. Seem to be getting more on arms and shoulders. 
- I tested 2 months in with a high value for HSV1 and negative for HSV2. I did not realize at the time that suppressive impacted IGG so not surprised it was negative. 
- stopped suppressive therapy for two weeks in April, but started to feel bad so took valtrex again for two weeks. Officially stopped 5/15. 
- took second HSV2 test on 7/2 and it came back negative (7 straight weeks off of suppressive and 9 total since exposure)
- took third test on 7/17 and it came back negative ( 9 weeks straight off of suppressive and 11 total)
- took fourth test on 7/24 and it came back negative (10 weeks straight, 12 total).

- I spoke with Terri Warren last week and went over symptoms and ordered western blot (she said none of my symptoms were of concern to her). 
- I’m going to do the blood draw at 13 weeks after being off of suppressive. This will be 15 weeks total over the past 4 months. I want a little cushion due to being OHSV1 positive and given the fact that I haven’t serocoverted. 
 

Like many others, I have seen many doctors: 2 primary care physicians multiple times, urologist twice and he scoped my penis (horrible experience). Saw infectious disease dr. Ran all STD tests and a full physical. All said you don’t have it move on with your life. i am on celexa and Trazedone for depression, anxiety and to help me sleep. 
 

I was a picture of health before my exposure and I have never experienced most of these symptoms. I am 49 years old and just had my colonoscopy and it was clean. Had prostate tested and it is good. 
 

After reading about many others, my hypothesis is that neuralgia develops over time with people who are slow to seroconvert or don’t convert at all. I have no medical or scientific evidence to back this up, but seems plausible. One of my many fears is that my western blot is going to come back negative as I should be seeing something in my IGG tests by now. I buy in to the facts about blood tests and their accuracy, but they aren’t 100% accurate, so it is certainly possible I am a 1%er. From what I’ve read, neuropathy needs a cause. Stress only exacerbates it so it doesn’t seem as though that in and of itself is the cause. 
 

The good news is that I am getting close to some much needed answers over the next few weeks. I will keep this group posted on my progress. 

I thought I’d give everyone an update. I had two additional areas swabbed that looked suspicious. The first was my anus as I was having some discomfort and thought I saw some herpes blisters. It came back negative. Also had a pimple-like sore near the same area. Urgent care dr said it looked heretic, but came back negative. 
 

Took another IGG test which was 11 weeks after stopping suppressive which came back negative. Still having nerve pain mostly in my butt and sharp pain shooting down my left leg.

I have an appt with my PCP Friday to get a referral to neurologist.

Next week I go for my blood draw for the western blot (8/I3).

In the next 30 days I hope to have completed the gauntlet and have some more, hopefully final answers. More importantly, I hope my pain is gone. I’ll keep y’all posted!

Share this post


Link to post
Share on other sites
WSX
3 hours ago, Runner278 said:

I thought I’d give everyone an update. I had two additional areas swabbed that looked suspicious. The first was my anus as I was having some discomfort and thought I saw some herpes blisters. It came back negative. Also had a pimple-like sore near the same area. Urgent care dr said it looked heretic, but came back negative. 
 

Took another IGG test which was 11 weeks after stopping suppressive which came back negative. Still having nerve pain mostly in my butt and sharp pain shooting down my left leg.

I have an appt with my PCP Friday to get a referral to neurologist.

Next week I go for my blood draw for the western blot (8/I3).

In the next 30 days I hope to have completed the gauntlet and have some more, hopefully final answers. More importantly, I hope my pain is gone. I’ll keep y’all posted!

Try to get suspicious skin biopsied next time. That was what an infectious disease doctor said can be helpful for folks testing negative, but still show symptoms.

Share this post


Link to post
Share on other sites
WilsoInAus
10 minutes ago, WSX said:

Try to get suspicious skin biopsied next time. That was what an infectious disease doctor said can be helpful for folks testing negative, but still show symptoms.

That's not quite right, the PCR is the best test as it actually looks for the DNA in the matter.

A biopsy is only an opinion and not a diagnosis. It might give you something like the cells 'appear herpetic' but this will not tell the difference between herpes (1/2) and shingles.

Share this post


Link to post
Share on other sites
Runner278
Posted (edited)
On 8/4/2020 at 5:58 PM, Runner278 said:

I thought I’d give everyone an update. I had two additional areas swabbed that looked suspicious. The first was my anus as I was having some discomfort and thought I saw some herpes blisters. It came back negative. Also had a pimple-like sore near the same area. Urgent care dr said it looked heretic, but came back negative. 
 

Took another IGG test which was 11 weeks after stopping suppressive which came back negative. Still having nerve pain mostly in my butt and sharp pain shooting down my left leg.

I have an appt with my PCP Friday to get a referral to neurologist.

Next week I go for my blood draw for the western blot (8/I3).

In the next 30 days I hope to have completed the gauntlet and have some more, hopefully final answers. More importantly, I hope my pain is gone. I’ll keep y’all posted!

Update:

met with PCP Friday to get a referral to neurologist. During the discussion he discussed my low white blood cell count from a test I took in February. My count is/was 3.61. I asked him if that could be contributing to slow development of antibodies. He didn’t really react to it much. With that said, I did take another IGG test Friday which came back negative. I’m at week 12 post suppressive therapy and week 14 total without taking AVs. I emailed Terri Warren to see if she feels I need to wait longer to take the western blot to allow my WBC to increase and/or allow antibodies to develop. I want to use the WB as the final step in my testing journey and I don’t want to have to question the results. 
 

Anyone have any experience or knowledge of someone with low/lower WBC and how long it took them to seroconvert?

Edited by Runner278

Share this post


Link to post
Share on other sites
Runner278
Posted (edited)

Here is an article that discusses postherpetic neuralgia. This is what my doctor will finally diagnose me with once I put it cleanly under his nose. While I haven’t had lesions, I’ve had many of the other symptoms of HSV2 that 5 drs, 4 urgent care professionals and Terri Warren has said “it’s not herpes”. I go for my western blot blood draw Thursday and I have an appointment with a neurologist on 9/1. This virus not only needs better treatment, it needs better drs. 
 

https://www.herpesite.org/post-herpetic-neuralgia-from-genital-herpes/

Edited by Runner278

Share this post


Link to post
Share on other sites
Laguna
On 8/11/2020 at 8:00 AM, Runner278 said:

Here is an article that discusses postherpetic neuralgia. This is what my doctor will finally diagnose me with once I put it cleanly under his nose. While I haven’t had lesions, I’ve had many of the other symptoms of HSV2 that 5 drs, 4 urgent care professionals and Terri Warren has said “it’s not herpes”. I go for my western blot blood draw Thursday and I have an appointment with a neurologist on 9/1. This virus not only needs better treatment, it needs better drs. 
 

https://www.herpesite.org/post-herpetic-neuralgia-from-genital-herpes/

The article says that PHN is supposed to get better over time, but this doesn't seem to be the case for me. It has intensified over time. Anyone else?

Share this post


Link to post
Share on other sites
Runner278
On 8/12/2020 at 10:25 PM, Laguna said:

The article says that PHN is supposed to get better over time, but this doesn't seem to be the case for me. It has intensified over time. Anyone else?

I’m about 4 months into my PHN. I have done a few things to make it better, but I don’t see any signs that it’s going away. My biggest issue is sitting. I’ve configured my desk at work to stand nearly the entire day. 

Share this post


Link to post
Share on other sites
Muscha
8 minutes ago, Runner278 said:

I’m about 4 months into my PHN. I have done a few things to make it better, but I don’t see any signs that it’s going away. My biggest issue is sitting. I’ve configured my desk at work to stand nearly the entire day. 

Have you been diagnosed yet? Have you gotten the results from the WB yet?

Share this post


Link to post
Share on other sites
Runner278
Posted (edited)
6 minutes ago, Muscha said:

Have you been diagnosed yet? Have you gotten the results from the WB yet?

Just did the blood draw yesterday for the western blot and it will arrive in WA later today. Terri said it would be 1-3 weeks before I hear back from her. Just a waiting game for now. I was at 13 straight weeks off of suppressive and 15 weeks total off of suppressive since my exposure. My exposure was 12/26/19. 

Edited by Runner278

Share this post


Link to post
Share on other sites
Runner278
On 8/14/2020 at 11:02 AM, Runner278 said:

Just did the blood draw yesterday for the western blot and it will arrive in WA later today. Terri said it would be 1-3 weeks before I hear back from her. Just a waiting game for now. I was at 13 straight weeks off of suppressive and 15 weeks total off of suppressive since my exposure. My exposure was 12/26/19. 

08/21/20 update:

blood arrived at UW a week ago and waiting to hear back on western blot results. I did another blood test this morning for IGG. I’m 14 weeks straight off of AVs and 16 weeks total over the past 4 months. I’ll keep everyone updated!

Share this post


Link to post
Share on other sites
Runner278
Posted (edited)
On 8/21/2020 at 11:23 AM, Runner278 said:

08/21/20 update:

blood arrived at UW a week ago and waiting to hear back on western blot results. I did another blood test this morning for IGG. I’m 14 weeks straight off of AVs and 16 weeks total over the past 4 months. I’ll keep everyone updated!

I got my WB back last week and it was positive for HSV1 (which I knew) and negative for HSV 2. I was at 13 weeks straight off of suppressive therapy and 15 weeks off of AVs total since exposure. I did another IGG test this week at the 15 week straight off of AVs and 17 weeks off of AVs total. It came back normal. I have my first appointment with my neurologist 9/1 and will see what he has to say. 
 

path forward:

1. Get my neuralgia figured out. That is my #1 goal and I suspect that will take 3-4 months. 
2. periodically IGG test depending on how I feel until I get to 6 months off of AVs
3. see if I can find a way to swab for shedding. That’s my biggest concern beyond the neuralgia. 

My plan is to put this to bed one way or another by year end. There is a good chance I am just not seroconverting due to my age (49), being OHSV1 positive for 30-40 years, low WBC and the use of AVs the first 4 months after exposure. Once I can feel better I will have more confidence and conviction that I may be negative and that I have done all I can do. 
 

I won’t rehash all of the reasons I am so persistent, but I do know I was exposed to HSV2

Edited by Runner278

Share this post


Link to post
Share on other sites
Runner278
On 8/30/2020 at 8:58 AM, Runner278 said:

I got my WB back last week and it was positive for HSV1 (which I knew) and negative for HSV 2. I was at 13 weeks straight off of suppressive therapy and 15 weeks off of AVs total since exposure. I did another IGG test this week at the 15 week straight off of AVs and 17 weeks off of AVs total. It came back normal. I have my first appointment with my neurologist 9/1 and will see what he has to say. 
 

path forward:

1. Get my neuralgia figured out. That is my #1 goal and I suspect that will take 3-4 months. 
2. periodically IGG test depending on how I feel until I get to 6 months off of AVs
3. see if I can find a way to swab for shedding. That’s my biggest concern beyond the neuralgia. 

My plan is to put this to bed one way or another by year end. There is a good chance I am just not seroconverting due to my age (49), being OHSV1 positive for 30-40 years, low WBC and the use of AVs the first 4 months after exposure. Once I can feel better I will have more confidence and conviction that I may be negative and that I have done all I can do. 
 

I won’t rehash all of the reasons I am so persistent, but I do know I was exposed to HSV2

Met with my neurologist this week and he is going to run me through all the normal tests including an MRI. I tried to explain my journey and he really wasn’t interested in listening. He did prescribe me gabapentin, so I’ll see if that helps. I’m on day three and ramping up dosage. I sent an email to my PCP to see if he’d prescribe Shingrix as I am 4 months from turning 50 and I figure it can’t hurt to get it and see if it helps at all. Since I’m at the 16 week mark off of AVs, I’m going to do another IGG test. 
I’ll continue to update this on my journey. 

Edited by Runner278

Share this post


Link to post
Share on other sites
missyrose

Outbreakes gone from every 3 months to every week over 3 years, but no symptoms. no pain no tiredness , no flu like symptoms.Just a butt cheek that looks like the map of great britain. Happy days people xxxxxxxx.Hope your all well soon or find something that controls this horrid virus. Stay happy folks xxx

Share this post


Link to post
Share on other sites
Runner278
On 9/3/2020 at 9:17 AM, Runner278 said:

Met with my neurologist this week and he is going to run me through all the normal tests including an MRI. I tried to explain my journey and he really wasn’t interested in listening. He did prescribe me gabapentin, so I’ll see if that helps. I’m on day three and ramping up dosage. I sent an email to my PCP to see if he’d prescribe Shingrix as I am 4 months from turning 50 and I figure it can’t hurt to get it and see if it helps at all. Since I’m at the 16 week mark off of AVs, I’m going to do another IGG test. 
I’ll continue to update this on my journey. 

Week 16 IGG test came back negative. I’m going to retest at week 20. 

Share this post


Link to post
Share on other sites
Runner278
On 9/5/2020 at 1:33 PM, Runner278 said:

Week 16 IGG test came back negative. I’m going to retest at week 20. 

Anyone know if you can be tested for shedding? I know they do it for clinical trials and it sounds like something you can do via a PCR. 

Share this post


Link to post
Share on other sites
Runner278
On 7/26/2020 at 5:44 PM, WSX said:

IGG Blood and conferring with an infectious disease doctor specializing in HSV. He knew right away what my symptoms indicated.

Would you mind giving me the name of the infectious disease dr you spoke with? You can PM me the info. 

Share this post


Link to post
Share on other sites
Runner278

Just wanted to provide everyone an update. 


I’ve been taking gabapentin for over two weeks now. It seems to be helping, specifically with pain (less severe) and less frequency. I wish I would have done this sooner.

I got my Shingrix (first shot) Monday. I know there is a debate over whether or not this has some cross reactivity with HSV 1/2. I’m almost 50 and would need it anyway, so I decided to get it. 
 

I had a red rash near my anus and decided to have it swabbed. While I was there I asked the dr to swab my penis to see if he could pick up any shedding. Both came back negative. 
 

Did another IGG test at 18 weeks, which came back negative. 
 

Next week I have my EMG scheduled and waiting for MRI. 


Whatever is happening with my body seems to be nerve related. It is mostly the pudendal nerve and is affecting my butt, anus, penis and legs. 

Hopefully I’m coming to the end of my journey. I’ve had a few moments without pain and it’s been awesome. Hopefully I can get my pain resolved and then work with my therapist on how I move forward. I appreciate all of the help, support and feedback. I’m a process guy, so going through this process is really necessary for me to move forward. 

I’ll make sure I keep everyone informed as I know many threads like this get abandoned once people get answers. Hopefully this is helpful. 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...

Important Information

We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue.