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fallin

Atypical Symptoms. Let’s compile a list.

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fallin

Our symptoms seem so different but are clearly HSV related. I wanted to share my symptoms. Wanted to know others’ as well. Please don’t hijack this thread with statements like “this isn’t herpes.”

HSV2 PCR swab positive. All blood test negative including western blot for 2 yrs.  

Genital burning without OBs constant  

4 extremity numbness and tingling with pain 

neck pain extending to chest 

Tinnitus 

insomnia from pain 

Occasional rashes that last only a day or two

generalized itching  

active bowels with bowel sounds

 

Please share your atypical symptoms for those who suffer badly  Thanks  

 

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true_blue

Tested negative IGG AT 2.5 months

General insomnia need a pill to go to sleep

Sometimes feel as if my nervous system is on fire when I wake up

Tingling and burning in my hands and stomach when I wake up

Constipation, need to eat prunes and probiotic yogurt in order to have a bowel movement

Can't feel my body correctly especially my stomach

Occasional rashes that last only a day or two

No real outbreaks just feels like it wants to but never does

Tinnitus

Chest nerve pain

 

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selu

Positive igg blood test for hsv1.

No lesions ever

General body itchiness

Pain in arm

Feeling of rawness and discomfort in vagina

Genital burning

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Chris Taylor

Negative igG for both hsv1 and 2 6 months from possible exposure.  Negative pcr cell swab.

Burning hip bone pain, leg joint pain , random anus pain, invisible rash feeling on back upper thigh where pants feel like sand paper but only when I sit,  nausea every morning never throw up but feeling, shoulder pain for 2 months non stop, folliculitis and forcyde spots.

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tayelle

Wow, I just googled tinnitus and realized I've been having that symptom as well.

Hsv2 positive via culture

 

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lali

-tingling feeling in the genital area

-tingling feeling in the middle of my upperback between spine and the scapula bone 

-feeling exhausted

-lower stomach pain

-ob's

 

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Jay2255

Tested negative IGG at 2 and 3 weeks but post exposure. Awaiting IGG and IGM results from 4 weeks post exposure.

symptoms in the weeks following exposure and still on and off fir some:

 

1. flu like with feverish, chills, fatigue.

2. Nausea.

3. Swollen lymph nodes (groin for a 1-2 days, neck for 2-3 weeks on and off).

4. Weight loss of ~4kg.

5. Urethra discomfort for several days,

6. Penis surface tingling and skin seems different.

7. Tingling feet and hands.

8. Burning/tingling feeling from under scrotum to rectum (even inside to prostate).

9. Hands and legs feel weak.

10. Dizzy and strange headaches at times where I feel not normal, as though I’d take drugs or something.

11. Inside ascending colon having pain there, never previously,

12. Only visible outbreak was a single zit (no cluster of bumps) on my upper thigh 1week post exposure. The doctor looked at it and said “not hsv”. In retrospect I should have demanded the swab for piece of mind instead of now relying on unreliable blood tests.

13. Tingling face and around eyes.

14. Waking up every night around 3-5am due to nausea or other.

15. Had geographic tongue for several days during the first 2 weeks.

16. Feel constipated and passing gas without controlling it (so soon after exposure?).

17. Skin on face feels different.

18. Hand/finger dexterity or motor skills affected.

19. Strange (metallic?) taste in my mouth. How can that b for GHSV?

20. 

I have been told by several people online that this is in no way herpes. Also 3 doctors said the same or they didn’t know because no obvious blisters. Spoke to another doctor on the phone today who said no blister means not herpes and he’s never seen an case without blisters.

My assumption is the outbreak is intermal (during urethra pain in the beginning).

Needless to say this is infinitely frustrating, discomforting and depressing, I spend hours a day looking at info and for news of possible cures and therapies.

I’m not yet diagnosed but feel I should be on AV’s because if I do have it the virus must be replicating and spreading.

The seeming lack of knowledge on the part of doctors and paid online experts is troubling. The way they consider an innocuous disease and nothing to be concerned with is also very troubling.

Reqd the hell these people are going through:

https://www.mdjunction.com/forums/genital-herpes-discussions/general-support/10786256-severe-symptoms-genital-herpes

 

Edited by Jay2255

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Stillme1968

none...or at least none I have ever felt or noticed..could have had this virus for twenty years now

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Jay2255
1 minute ago, Stillme1968 said:

none...or at least none I have ever felt or noticed..could have had this virus for twenty years now

Ok don’t brag too much :)

No initial OB either?

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Stillme1968

ya on one hand I do not have to suffer from outbreaks

on other ..I went years without knowing I even had this..

 

way back when I was in my early twenties I did have an outbreak

a few little blisters that broke and oozed but when I went to the doctor she

diagnosed me with Chlymidia and gave me antibiotics and sent me home

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Jay2255

Luckiest of the unlucky.

 

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selu
7 hours ago, Jay2255 said:

Luckiest of the unlucky.

 

Do you suspect urs to be hsv1 or 2?

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IcantThinkofaName

GHSV2 positive: swab and IGG. I've had H for 1 year now.

I have the classic Obs almost monthly, always on the LEFT side of my genital/butt region- always in a different place

but,.I also get this crap all month in between on and off:

1.Genital burning /itching/ strange sensations/ pinching or stabbing , I have a very sensitive vagina now, I can barely wear underwear with out it rubbing me and causing pain. I have even went up in sizes to try to alleviate. Any rubbing or injury  there, even from underwear,  will cause an OB (never had  this crap before infection, had itching if it was yeast infection but that itching feels different)

2.Anal itching and pain or pinching (never had before infection)

3.bad hip pain  and leg pain (left side)- like nerve damage and  numbness so bad I cannot sleep sometimes, (never had before infection)

4.pins and needles tingling in feet and leg  ( i have had that feeling before in the past before infection  but now its more so on left side now )

 5.Tinnitus ( i have had this before in the past before infection, some say its low magnesium or other mineral)

6. A very weird Left arm numbness and sunburn feeling rash for days with no visable rash/marks -before I got an OB  (never had before infection) and sometimes I get that on back of thigh too

7. generalized itching  and rashes in other places on body, like stomach, arms  ( i have had this before in the past )

8. I have really bad large pimple now on my face, like big huge red zits that keep recurring all month. I've not  had like this since I was 16 and I don't think they were like this then.

9. vagina skin is rougher and more textured than before ( could it be from just aging?? i don't know anymore)

10 one time , right before an OB, I got a very sudden sharp pain in my left hip so bad that I almost fell to the ground.

This is NOT all in my head. Its real physical pain and sensations  that I try to ignore but sometimes its just not possible

My BF says I almost always think I'm getting an outbreak. Well, thats because I'm almost always feeling something.

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Jay2255
29 minutes ago, IcantThinkofaName said:

GHSV2 positive: swab and IGG. I've had H for 1 year now.

I have the classic Obs almost monthly, always on the LEFT side of my genital/butt region- always in a different place

but,.I also get this crap all month in between on and off:

1.Genital burning /itching/ strange sensations/ pinching or stabbing , I have a very sensitive vagina now, I can barely wear underwear with out it rubbing me and causing pain. I have even went up in sizes to try to alleviate. Any rubbing or injury  there, even from underwear,  will cause an OB (never had  this crap before infection, had itching if it was yeast infection but that itching feels different)

2.Anal itching and pain or pinching (never had before infection)

3.bad hip pain  and leg pain (left side)- like nerve damage and  numbness so bad I cannot sleep sometimes, (never had before infection)

4.pins and needles tingling in feet and leg  ( i have had that feeling before in the past before infection  but now its more so on left side now )

 5.Tinnitus ( i have had this before in the past before infection, some say its low magnesium or other mineral)

6. A very weird Left arm numbness and sunburn feeling rash for days with no visable rash/marks -before I got an OB  (never had before infection) and sometimes I get that on back of thigh too

7. generalized itching  and rashes in other places on body, like stomach, arms  ( i have had this before in the past )

8. I have really bad large pimple now on my face, like big huge red zits that keep recurring all month. I've not  had like this since I was 16 and I don't think they were like this then.

9. vagina skin is rougher and more textured than before ( could it be from just aging?? i don't know anymore)

10 one time , right before an OB, I got a very sudden sharp pain in my left hip so bad that I almost fell to the ground.

This is NOT all in my head. Its real physical pain and sensations  that I try to ignore but sometimes its just not possible

My BF says I almost always think I'm getting an outbreak. Well, thats because I'm almost always feeling something.

I hear ya. How old are you (roughly) if you don’t mind me asking.

I was just noticing a mild tinnitus today as well. Does this mean the virus has come up from the lower back to the head?

Yes I notice the skin in my genitals is rougher as well. 

It seems there are a lot of common symptoms people experience as well as less common. I guess it all depends on where the virus is distributed in the body over time and the extent of the nerve damage it does.

no matter how many doctors I speak to they have never heard of these kind of symptoms they say. How can this be?

Edited by Jay2255

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IcantThinkofaName
10 minutes ago, Jay2255 said:

I hear ya. How old are you (roughly) if you don’t mind me asking.

I was just noticing a mild tinnitus today as well. Does this mean the virus has come up from the lower back to the head?

Yes I notice the skin in my genitals is rougher as well. 

It seems there are a lot of common symptoms people experience as well as less common. I guess it all depends on where the virus is distributed in the body over time and the extent of the nerve damage it does.

no matter how many doctors I speak to they have never heard of these kind of symptoms they say. How can this be?

43

Few drs know anything about HSv nor do they care to. My PCP won't even talk to me about it. Not his dept I guess. He saw my test results and said nothing I guess because they were ordered by my Gyno, even though I was in his office and he was looking at my tests and overall health that day. You would think he ask or  be concerned about my health. Guess again. he didn't say a word. too embarrassing I guess. 

My gyno said these symptoms were not herpes,and that i was being hypersensitve- its all in my head. I tried to tell him I'm not.

I gave up trying to discuss  these symptoms anymore (or anything else ) with drs.  There is nothing they can do anyway about HSV. They can only hand out sripts for antivirals and antidepressants.They really don't give a shit or want to listen anyway.

I wouldn't worry about the tinnitus, i personally doubt  that is from HSV. I am sure mine is from hearing loss from power tool and concerts I just added it because everyone else did : From wikipedia:

Tinnitus is not a disease but a symptom that can result from a number of underlying causes.[2] One of the most common causes is noise-induced hearing loss.[2] Other causes include ear infections, disease of the heart or blood vessels, Ménière's disease, brain tumors, emotional stress, exposure to certain medications, a previous head injury, and earwax.[2][4] It is more common in those with depression.[3]

 

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Theblues

Apart from this virus obviously affecting our CNS do you think it could also be inducing some sort of chronic auto immune response.? That would explain the differences and parallels in our symptoms.  I’m mean if other herpes viruses like cytomegalovirus and Epstein Barr are being looked at for possible causes of Chronic Fatigue Sydrome then why not HSV

Edited by Theblues

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IcantThinkofaName

its  totally plausable.

I read that the more viruses you get  the higher the likelihood of Autoimmune issues. 

 

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New anonymous

I am 1 year and 3 weeks post exposure i have spent thousands on doctors with no help, these are my symptoms im left with...

1. Debilitating peripheral neuropathy from my low back to my feet,(horrible nerve burning pain) sometime electric shock type jolt pains in legs.

2. Joint pain in hips, knees, and sometimes feet.

3. Pudendal neuralgia. (Nerve damage to the penis)  i am practically impotent with very little sensation. And horrible nerve pain in the pelvis. Severe low abdomen pain.

4. Benign fascuclation syndrome all over my body at random times.

These are my symptoms and they are very real, very painful and extremely depressing. I honestly dont know how i have made it this long.

Some doctors believe my theory of autoimmune reaction and some dont, my hope is with family support and with my children and this forum to know that im not alone.

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Jay2255
40 minutes ago, IcantThinkofaName said:

43

Few drs know anything about HSv nor do they care to. My PCP won't even talk to me about it. Not his dept I guess. He saw my test results and said nothing I guess because they were ordered by my Gyno, even though I was in his office and he was looking at my tests and overall health that day. You would think he ask or  be concerned about my health. Guess again. he didn't say a word. too embarrassing I guess. 

My gyno said these symptoms were not herpes,and that i was being hypersensitve- its all in my head. I tried to tell him I'm not.

I gave up trying to discuss  these symptoms anymore (or anything else ) with drs.  There is nothing they can do anyway about HSV. They can only hand out sripts for antivirals and antidepressants.They really don't give a shit or want to listen anyway.

I wouldn't worry about the tinnitus, i personally doubt  that is from HSV. I am sure mine is from hearing loss from power tool and concerts I just added it because everyone else did : From wikipedia:

Tinnitus is not a disease but a symptom that can result from a number of underlying causes.[2] One of the most common causes is noise-induced hearing loss.[2] Other causes include ear infections, disease of the heart or blood vessels, Ménière's disease, brain tumors, emotional stress, exposure to certain medications, a previous head injury, and earwax.[2][4] It is more common in those with depression.[3]

 

Google “tinnitus herpes”

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Jay2255
1 minute ago, New anonymous said:

I am 1 year and 3 weeks post exposure i have spent thousands on doctors with no help, these are my symptoms im left with...

1. Debilitating peripheral neuropathy from my low back to my feet,(horrible nerve burning pain) sometime electric shock type jolt pains in legs.

2. Joint pain in hips, knees, and sometimes feet.

3. Pudendal neuralgia. (Nerve damage to the penis)  i am practically impotent with very little sensation. And horrible nerve pain in the pelvis. Severe low abdomen pain.

4. Benign fascuclation syndrome all over my body at random times.

These are my symptoms and they are very real, very painful and extremely depressing. I honestly dont know how i have made it this long.

Some doctors believe my theory of autoimmune reaction and some dont, my hope is with family support and with my children and this forum to know that im not alone.

Sorry to hear that. Stay strong.

When you have OB’s do you get blisters?

Also did you have kids after contracting HSV or before?

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New anonymous
10 minutes ago, Jay2255 said:

Sorry to hear that. Stay strong.

When you have OB’s do you get blisters?

Also did you have kids after contracting HSV or before?

Ive only had 3 visible outbreaks and they were all 3 months post exposure. (Small pimple like/open cut spots) now its just connstant visible redness on penis)

Long story short, had one child before, then a devistating divorce then i contracted this the month after the divorce. a old friend came back into my life and saved me, i was actually able somehow to concive another child who due in may. 

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IcantThinkofaName
21 hours ago, Jay2255 said:

Google “tinnitus herpes”

uggh, i wish I hadn't now

My left ear actually gets really itchy inside sometimes. once I thought I had transmited HSV to my ear.  i don't think I did now, but I was having issues for about a month

now reading this on google brings up more questions

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doh!

Horniness...
A general and unspecified (as in not toward anyone- or anything if that's your predilection) horniness.
I count it as a prodrome symptom.

Think about it. You have a tingle here, a tingle there caused by a virus that wants to multiply.
How does it multiply? Bingo! You guessed right.

I guess I'm old enough now to distinguish between randy (feeling a need to get my jollies) and this.
When I contracted hsv in '09 my giver and I were giving it alright!
We thought the first blister was from wear and tear....

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WilsoInAus
17 minutes ago, Jay2255 said:

Wtf I am experincibng non stop tinnitus since yesterday now.

Well that is pretty much proof that you do not have herpes, not that it was required of course.

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