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Elleohelle

Would love any advice on if these symptoms seem like hsv  or if anyone else has had consistent negative testing yet present with intense symptoms. Doctors I have seen do not think it is hsv. But cannot give me any other explanation. 

Had sex in 11/8 and symptoms started 11/15 and have wavered in intensity and changed yet been consistent through out the last 5 months.

Initial symptoms: vaginal itching, thick white discharge, anal itching, two tears in labia. Doctor thought it could be yeast was treated and with no change to my symptoms. 

Following symptoms: chills, body aches, smooth bumps that burned slightly on buttock, headaches, nerve pain in hands and feet as well as wrist. Constipation and numbness on clit. Watery/bubbly discharge even though no internal lesions were present. Also had grey discharge for one day.

Next symptoms: burning sensation, tingling, cooling sensation in groin, back thighs, and buttocks. which has continued for the last 4 months with little relief. Also raw and irritated feeling in thighs and labia area. discharge goes from a sticky whiteish consistency to a thick white consistency. 

Symptoms on mouth: tingling, burning, splitting, and tears on  one side of lip. These seems appear off and on occasionally. 

The most intense symptoms of all is the nerve pain. It feels like I cant escape it. And it is the main symptoms that leads me to believe I have hsv

I have had no noticeable lesions, blisters or coldsores. 

Has been negative for yeast, BV, and other stds. 

Tears were swab with a viral culture: negative. 

IgG test at 2 weeks, 5 weeks, 12 weeks 18 weeks: negative. 

I have had the western blot kit sent to me, just worried about finding a doctor that will agree to sign the paperwork. Planning to get the WB to give me answers. 

Partner refused to get tested for HSV and claims he is clean which makes me even more suspicious. 

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These are similar to my symptoms back in 2016-2018. I had some oral lesions but never got them swabbed because I couldn't see my doctor at that time. I stopped getting blood tests and never got the western blot. Hopefully the WB will give you more answers. 

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Elleohelle
17 hours ago, ohno35 said:

These are similar to my symptoms back in 2016-2018. I had some oral lesions but never got them swabbed because I couldn't see my doctor at that time. I stopped getting blood tests and never got the western blot. Hopefully the WB will give you more answers. 

Did you ever get a confirmed diagnosis? Did you find a way to manage your symptoms? 

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23 hours ago, Elleohelle said:

Would love any advice on if these symptoms seem like hsv  or if anyone else has had consistent negative testing yet present with intense symptoms. Doctors I have seen do not think it is hsv. But cannot give me any other explanation. 

Had sex in 11/8 and symptoms started 11/15 and have wavered in intensity and changed yet been consistent through out the last 5 months.

Initial symptoms: vaginal itching, thick white discharge, anal itching, two tears in labia. Doctor thought it could be yeast was treated and with no change to my symptoms. 

Following symptoms: chills, body aches, smooth bumps that burned slightly on buttock, headaches, nerve pain in hands and feet as well as wrist. Constipation and numbness on clit. Watery/bubbly discharge even though no internal lesions were present. Also had grey discharge for one day.

Next symptoms: burning sensation, tingling, cooling sensation in groin, back thighs, and buttocks. which has continued for the last 4 months with little relief. Also raw and irritated feeling in thighs and labia area. discharge goes from a sticky whiteish consistency to a thick white consistency. 

Symptoms on mouth: tingling, burning, splitting, and tears on  one side of lip. These seems appear off and on occasionally. 

The most intense symptoms of all is the nerve pain. It feels like I cant escape it. And it is the main symptoms that leads me to believe I have hsv

I have had no noticeable lesions, blisters or coldsores. 

Has been negative for yeast, BV, and other stds. 

Tears were swab with a viral culture: negative. 

IgG test at 2 weeks, 5 weeks, 12 weeks 18 weeks: negative. 

I have had the western blot kit sent to me, just worried about finding a doctor that will agree to sign the paperwork. Planning to get the WB to give me answers. 

Partner refused to get tested for HSV and claims he is clean which makes me even more suspicious. 

Hey there.  A noted HSV Dr. H. Hunter Handsfield has stated several times that symptoms absent visible lesions is not much concern for herpes.  Continue to talk with your providers as there may be something else going on but the good news its most likely not HSV.

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7 hours ago, Elleohelle said:

Did you ever get a confirmed diagnosis? Did you find a way to manage your symptoms? 

I stopped testing eventually so I did not receive a diagnosis. I'm thinking of getting a WB for peace of mind.

The symptoms just went away eventually. Reducing stress helped, so stress may have been the cause of the symptoms, or it was causing the infection to be more severe. I'm still not sure.

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  • 3 weeks later...
Elleohelle

Just an update to this post. 

I was unable to find a doctor who would sign the form for the western blot. So I ended up doing it through Terri Warren. 

It was costly, but worth it. 

Sent it off yesterday so I am just hoping all went well with the sample/paperwork and that there will be no issues. 

I am so ready for this long stressful confusing situation to be over with it. 

 

 

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On 5/19/2021 at 11:05 PM, Elleohelle said:

Just an update to this post. 

I was unable to find a doctor who would sign the form for the western blot. So I ended up doing it through Terri Warren. 

It was costly, but worth it. 

Sent it off yesterday so I am just hoping all went well with the sample/paperwork and that there will be no issues. 

I am so ready for this long stressful confusing situation to be over with it. 

 

 

Let us know how it goes!

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  • 2 weeks later...
On 5/20/2021 at 4:05 AM, Elleohelle said:

Just an update to this post. 

I was unable to find a doctor who would sign the form for the western blot. So I ended up doing it through Terri Warren. 

It was costly, but worth it. 

Sent it off yesterday so I am just hoping all went well with the sample/paperwork and that there will be no issues. 

I am so ready for this long stressful confusing situation to be over with it. 

 

 

Hi there,

I live in the Uk also, and was wondering who you used to draw blood and have it spun? I’m struggling to find a doctor who can draw the blood and spin it... seems that is the trickiest part.

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Elleohelle
19 hours ago, Johnkent said:

Hi there,

I live in the Uk also, and was wondering who you used to draw blood and have it spun? I’m struggling to find a doctor who can draw the blood and spin it... seems that is the trickiest part.

Hey, I’m sorry for the misunderstanding but I don’t live in the UK. 

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Elleohelle

My western blot was negative. Now on a new quest to find out what’s the reason for all the physical pain I’ve been going through. Since herpes is off of my list. 

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Posted (edited)
7 hours ago, Elleohelle said:

My western blot was negative. Now on a new quest to find out what’s the reason for all the physical pain I’ve been going through. Since herpes is off of my list. 

Thanks for the update.  It will hopefully help others to realize that not all symptoms are herpes related. Good luck.

Edited by Muscha
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On 6/1/2021 at 2:45 AM, Elleohelle said:

My western blot was negative. Now on a new quest to find out what’s the reason for all the physical pain I’ve been going through. Since herpes is off of my list. 

I'm so glad your WB was negative. I hope you can get some peace of mind from that even though you are still in pain.

My symptoms have been very similar to yours. I had them from Nov 2016 to about August 2018. They went away completely after that and then came back recently in April 2021. My symptoms include lip and mouth burning, suspected herpes outbreak on my upper right lip for 2-3 weeks but nothing after that, extreme anxiety and depression, itching and burning in my vagina and anus, severe nerve pain down my legs, but never any sores or anything that could be a sore down below. It's taken me a while to revisit finding a possible cause for these issues because my doctors were very unhelpful, but now that I'm older (almost 24 vs. just turned 19), I feel more equipped to advocate for myself. IGG tests have all been negative, though type 1 index was .88 on the last test I took in June 2017. I just took another IGG test and depending on those results, I may try to get the WB. Two swabs of painful spots in my vagina I got recently have been negative as well. 

 

Do you have any inclination on what may be causing your symptoms, if you don't mind me asking? 

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2 hours ago, ohno35 said:

I'm so glad your WB was negative. I hope you can get some peace of mind from that even though you are still in pain.

My symptoms have been very similar to yours. I had them from Nov 2016 to about August 2018. They went away completely after that and then came back recently in April 2021. My symptoms include lip and mouth burning, suspected herpes outbreak on my upper right lip for 2-3 weeks but nothing after that, extreme anxiety and depression, itching and burning in my vagina and anus, severe nerve pain down my legs, but never any sores or anything that could be a sore down below. It's taken me a while to revisit finding a possible cause for these issues because my doctors were very unhelpful, but now that I'm older (almost 24 vs. just turned 19), I feel more equipped to advocate for myself. IGG tests have all been negative, though type 1 index was .88 on the last test I took in June 2017. I just took another IGG test and depending on those results, I may try to get the WB. Two swabs of painful spots in my vagina I got recently have been negative as well. 

 

Do you have any inclination on what may be causing your symptoms, if you don't mind me asking? 

Hi @ohno35.  Glad to see you have been proactive with your health as well. I hope you find the cause of your discomfort as it sounds like herpes can be ruled out with all of the negative testing you have had.  Good luck to you as well.

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On 6/1/2021 at 1:45 AM, Elleohelle said:

My western blot was negative. Now on a new quest to find out what’s the reason for all the physical pain I’ve been going through. Since herpes is off of my list. 

How easy is it to get the Western Blot test done?  Is this something any general practitioner can order from a lab?  

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Elleohelle
On 6/2/2021 at 3:15 PM, ohno35 said:

I'm so glad your WB was negative. I hope you can get some peace of mind from that even though you are still in pain.

My symptoms have been very similar to yours. I had them from Nov 2016 to about August 2018. They went away completely after that and then came back recently in April 2021. My symptoms include lip and mouth burning, suspected herpes outbreak on my upper right lip for 2-3 weeks but nothing after that, extreme anxiety and depression, itching and burning in my vagina and anus, severe nerve pain down my legs, but never any sores or anything that could be a sore down below. It's taken me a while to revisit finding a possible cause for these issues because my doctors were very unhelpful, but now that I'm older (almost 24 vs. just turned 19), I feel more equipped to advocate for myself. IGG tests have all been negative, though type 1 index was .88 on the last test I took in June 2017. I just took another IGG test and depending on those results, I may try to get the WB. Two swabs of painful spots in my vagina I got recently have been negative as well. 

 

Do you have any inclination on what may be causing your symptoms, if you don't mind me asking? 

Honestly I have many ideas of what it could be. On my list is a pinched nerve, a herniated disc, sciatica, Lichen sclerosus, ureaplasma, mycoplasma, a ovarian cyst, and a groin hernia or pelvic floor dysfunction, pelvic inflammatory disorder. So as you can see I have so many ideas and none really fit all my symptoms perfectly.  So I plan within a few weeks to start going back to the doctors and figuring it all out for certain. 

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Elleohelle
On 6/2/2021 at 8:23 PM, CHT said:

How easy is it to get the Western Blot test done?  Is this something any general practitioner can order from a lab?  

It was extremely frustrating to convince a pcp to sign the document and she just was clueless on the whole thing and was giving me misinformation so it seemed like the easier option would be to go through Terri. The process  was not  that difficult. I set the appointment with Terri warren and went to a any test lab right after the appointment and got my blood drawn. Then went to fed ex and was turned around because I needed to go to one that would ship body fluids so that was really the only complication I had. 

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9 hours ago, Elleohelle said:

It was extremely frustrating to convince a pcp to sign the document and she just was clueless on the whole thing and was giving me misinformation so it seemed like the easier option would be to go through Terri. The process  was not  that difficult. I set the appointment with Terri warren and went to a any test lab right after the appointment and got my blood drawn. Then went to fed ex and was turned around because I needed to go to one that would ship body fluids so that was really the only complication I had. 

thanks for the information.... sounds clearly that the Terri Warren option is the best option here.....why would the lab taking the blood sample not handle the shipment for you?  Was it one of the big labs like Labquest or LabCorp?

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16 hours ago, Elleohelle said:

Honestly I have many ideas of what it could be. On my list is a pinched nerve, a herniated disc, sciatica, Lichen sclerosus, ureaplasma, mycoplasma, a ovarian cyst, and a groin hernia or pelvic floor dysfunction, pelvic inflammatory disorder. So as you can see I have so many ideas and none really fit all my symptoms perfectly.  So I plan within a few weeks to start going back to the doctors and figuring it all out for certain. 

Thank you for responding, and I hope you find out what's going on. I wonder if my symptoms are being caused by stress, which subsequently caused extreme vaginal dryness and vaginal atrophy, which then always leads to nerve pain. 

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2 minutes ago, ohno35 said:

Thank you for responding, and I hope you find out what's going on. I wonder if my symptoms are being caused by stress, which subsequently caused extreme vaginal dryness and vaginal atrophy, which then always leads to nerve pain. 

Some sort of autoimmune issue similar to sjorgren's syndrome seems possible as well. 

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On 6/2/2021 at 7:05 PM, Muscha said:

Hi @ohno35.  Glad to see you have been proactive with your health as well. I hope you find the cause of your discomfort as it sounds like herpes can be ruled out with all of the negative testing you have had.  Good luck to you as well.

Hello, I'm going to get the WB done soon, as I know the IGG tests can miss some cases. I'm not sure if I can rule out herpes completely.

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9 minutes ago, ohno35 said:

Hello, I'm going to get the WB done soon, as I know the IGG tests can miss some cases. I'm not sure if I can rule out herpes completely.

You should do what makes you feel comfortable but whatever the results, I hope you will accept them.  I cant remember the last time you were tested and your sexual history during that time but the WB should clear up your concerns.

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No I’m still looking. I’m clueless at this point. I’ve noticed that during last week when I didn’t stress and worry constantly about my symptoms I barely felt them at all and now that my anxiety is rising again I’m feeling them more intensely. So I’m just going to have to go back to the doctors office and see if anyone can shed some light on my issues. 

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17 minutes ago, Elleohelle said:

No I’m still looking. I’m clueless at this point. I’ve noticed that during last week when I didn’t stress and worry constantly about my symptoms I barely felt them at all and now that my anxiety is rising again I’m feeling them more intensely. So I’m just going to have to go back to the doctors office and see if anyone can shed some light on my issues. 

I'm sorry you're struggling to find answers; I feel like I'm in a similar place. 

When I stopped worrying about the symptoms, they eventually went away completely after almost two years. Then, I did not experience any symptoms AT ALL for 2.5 years. In April I started worrying about the symptoms again, and they came back and are pretty much constant, as they were before. I know that it looks like it's *just* anxiety. But my gut is telling me there might be something else going on. I'm getting the WB done so I can finally rule out herpes completely. 

I've been diagnosed with somatic symptom disorder, and I've wondered if it's not just anxiety about symptoms but hyperfocus on certain parts of my body that makes the nerves more sensitive and causes neurological-like issues. I've always struggled with hyperfocus and I've found I fit into the diagnostic criteria for Autism, ADHD, and OCD, but do not have enough of any of the symptoms to qualify for a diagnosis (though I have been misdiagnosed with 2/3 multiple times). The concept of Vulvodynia seems interesting because my understanding of it is that it results from hypersensitive nerves from a variety of initial causes. I wonder if hyperfocus on my vagina, vulva, and mouth is causing certain symptoms. 

I definitely had extreme anxiety about herpes before my symptoms started, but I did have an outbreak on my mouth of something that seemed too long-lasting and blistery to just be a pimple, so I wonder if herpes or another related virus is involved too. I know I'm anxious, but I still know my body and I've never had anything on my mouth like that before, as far back as I can remember. I still have the scar from the huge blister almost five years later!!!!! Otherwise I would have been effectively gaslit by my doctors that it was a pimple and I was overreacting. It's possible though that I have had HSV-1 since childhood and had a rare herpes outbreak, but all the other symptoms are largely unrelated. I was hospitalized at age 4 for an extreme reaction to mono and possibly HSV-1, so I'll have to see if I can locate those hospital records. If I can confirm I was positive for HSV 1 at age 4 and also come up positive on the WB, I could still probably rule out my current symptoms being caused by herpes. 

If my herpes WB is negative, I do wonder if another virus could be the culprit. I'm not sure if other things can cause blisters on the mouth, or if the oral blister and my other symptoms are unrelated. I know CMV is not out of the question. I know that hand, foot, and mouth disease was epidemic at my University at the time, so it could have caused the oral sore and maybe been an instigator for chronic pain? I've been reading about how certain infections can be catalysts for nerve pain, reactive arthritis, and so on for people with certain genes, autoimmune issues, high levels of stress, and/or other pre-existing risks. I've always had weird reactions to things despite being seemingly healthy, so that would not be out of the question. 

We seem to have very similar symptoms, so I'll keep you updated on what I find! I'm getting blood drawn for the WB next week, and then I'll see what happens after that. 

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      I’ve been diagnosed with hsv1 and have had some cold sores on the inside of my lips.  I’ve been diagnosed for some time with that. But around July 2020 I went in for an std panel and to my surprise my hsv2 IGG levels were equivocal.  My doctor at the time told me that I indefinitely had hsv2 although I’ve never had any symptoms.  This began a whole craze. I switched doctors and ordered another hsv2 test that also came back equivocal and was told that what the first doctor said was correct, that I do in fact have hsv2. The fact that I wasn’t testing positive and none of my past sexual partners tested positive led me to think I should keep getting tested to confirm whether I do or don’t have it.  So I went for the third test and it was .72 IGG which would be a negative. (Around July 2020 as well) I was still a little confused so I went for another a couple months later in October 2020, this hsv2 test was .89 IGG which is right under equivocal but still negative.  So armed with this data I went to a private doctor that I paid out of pocket for because I began to think that the Medicaid doctors might be wrong and maybe underpaid or whatever I dunno it just didn’t make sense. So I went to the private doctor and at the time I had what seemed to be like a small ingrown hair and I showed them and showed them my data. They said based off the ingrown hair that it was just an ingrown hair, and that the lab results were correct and that I had no hsv2 and that the prior doctors were wrong. The doctor said I should’ve never been tested because I never had any symptoms prior to that small ingrown hair.  So this made me happy but also made me lose faith in our healthcare system.  But just recently I went back for my 10 panel and on 6/9/2021 my hsv2 results were 1.11 IGG which indicates I am positive. This is driving me crazy and on a side note I noticed that my hsv1 IGG levels were both gradually going up as the hsv2 was creeping up. I dunno if there’s any correlation there but it’s just something I went back to look at out of curiosity because I do know I’m hsv1 positive.  At this point I just want to know if I am in fact hsv2 positive, what should I do? I want to get the western blot test because it’s supposedly the golden standard.   here are copies of my tests  https://ibb.co/Wskdtqs https://ibb.co/fGgjJxd https://ibb.co/HryKn8g
    • ohno35
      I'm sorry you're struggling to find answers; I feel like I'm in a similar place.  When I stopped worrying about the symptoms, they eventually went away completely after almost two years. Then, I did not experience any symptoms AT ALL for 2.5 years. In April I started worrying about the symptoms again, and they came back and are pretty much constant, as they were before. I know that it looks like it's *just* anxiety. But my gut is telling me there might be something else going on. I'm getting the WB done so I can finally rule out herpes completely.  I've been diagnosed with somatic symptom disorder, and I've wondered if it's not just anxiety about symptoms but hyperfocus on certain parts of my body that makes the nerves more sensitive and causes neurological-like issues. I've always struggled with hyperfocus and I've found I fit into the diagnostic criteria for Autism, ADHD, and OCD, but do not have enough of any of the symptoms to qualify for a diagnosis (though I have been misdiagnosed with 2/3 multiple times). The concept of Vulvodynia seems interesting because my understanding of it is that it results from hypersensitive nerves from a variety of initial causes. I wonder if hyperfocus on my vagina, vulva, and mouth is causing certain symptoms.  I definitely had extreme anxiety about herpes before my symptoms started, but I did have an outbreak on my mouth of something that seemed too long-lasting and blistery to just be a pimple, so I wonder if herpes or another related virus is involved too. I know I'm anxious, but I still know my body and I've never had anything on my mouth like that before, as far back as I can remember. I still have the scar from the huge blister almost five years later!!!!! Otherwise I would have been effectively gaslit by my doctors that it was a pimple and I was overreacting. It's possible though that I have had HSV-1 since childhood and had a rare herpes outbreak, but all the other symptoms are largely unrelated. I was hospitalized at age 4 for an extreme reaction to mono and possibly HSV-1, so I'll have to see if I can locate those hospital records. If I can confirm I was positive for HSV 1 at age 4 and also come up positive on the WB, I could still probably rule out my current symptoms being caused by herpes.  If my herpes WB is negative, I do wonder if another virus could be the culprit. I'm not sure if other things can cause blisters on the mouth, or if the oral blister and my other symptoms are unrelated. I know CMV is not out of the question. I know that hand, foot, and mouth disease was epidemic at my University at the time, so it could have caused the oral sore and maybe been an instigator for chronic pain? I've been reading about how certain infections can be catalysts for nerve pain, reactive arthritis, and so on for people with certain genes, autoimmune issues, high levels of stress, and/or other pre-existing risks. I've always had weird reactions to things despite being seemingly healthy, so that would not be out of the question.  We seem to have very similar symptoms, so I'll keep you updated on what I find! I'm getting blood drawn for the WB next week, and then I'll see what happens after that. 
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