Erythema multiforme from hsv ugh

[whitedaisies]

So does anyone know if te lesions caused from erythema multiforme resulting from hsv are contagious? I have my dermatologist appt in a month and I am petrified that these tiny bumps with preceding itchiness on legs and neck are contagious. All sites are conflicting. Ugh!!!!! Double ugh!!!!!

 

I am soooo tired of this virus. I am so tired of being a freak within the symptoms of the virus. Not only is it rare to have erythema multiforme from hsv but it is also more rare that it recurs and it's more common in men than women. So I have defied all odds!!!!yippee. Should play the lottery w my good luck?

 

Oh and btw bc it took me 8 months to get a positive test and no herpes lesions my doctor labelled me as OCD and I was delusional in that I thought I had hsv with no medical evidence of support. So I go see him Friday. Hoping to rub my positive diagnosis in his face!!!! Who was the delusional one?!?

 

Ok I am angry today.

 

Angry that my lover didn't see me thru this hell of a diagnosis because it was "uncomfortable". Meanwhile I was suicidal, struggling to get doctors to treat me properly, life falling apart and he was fuckig uncomfortable. Oh poor dear!!!!

 

I think I am done. Rant over

[Scared4this]

Can I ask how were u diagnose if there is no outbreak of lesion or sores?

Was ur partner tested?

 

Sorry I am new to all this so I am just learning.

 

I am sorry to hear the frustration and just to let u know... U r so strong and I admire u so much!

 

God bless, S

[whitedaisies]

Thank u!!! I can't believe te horrific journey I have been on. Still standing most days.

 

I had typical symptoms without sores in oral and genital area. Received 2 negative blood tests followed by a positive one at 8 months for hav1

[WCSDancer2010]

So - did a little reading... and combined with my previous knowledge, this is what I've come to understand.

 

1) First point is that H doesn't spread through the blood or fluids outside of the area of the initial infection (genitals or mouth)

 

2) The EM lesions are a hyper-sensitive reaction to the "viral antigen-positive cells that contain the HSV DNA polymerase gene (pol)."*** ... aka the antibodies to the virus which DO circulate through the body.

 

***http://www.ncbi.nlm.nih.gov/pubmed/22788803

 

So given these two pieces of info, I would say that the EM lesions shouldn't contain the HSV virus .... because its a reaction to the antibodies, NOT the virus itself.

 

Hope that helps :)

[whitedaisies]

Yay! Love you Dancer! I feel like a walking virus with all these tiny bumps. My naturalpath said it wasn't contagious, but I just worry b/c it was triggered by hsv. So weird, I get no sores. Not that I am upset about that, just makes diagnosis and treatment so much more labourous and confusing. Don't know when I am contagious and when I am not. If the itchiness and papules from erythema multiforme aren't contagious then I guess I will go by prodome symptoms I have like numbness. It's sooooo strange.

 

Yay! I am a freak of nature! Always wanted to be special! LOL

[whitedaisies]

Still trying to figure if it disseminated or if it's erythema multiforme and I don't know as I feel symptoms all over my body. It's weird. Itchiness numbness pain is on and off and at different parts of body. No place is free of it. It's strange despite my positive hsv1 test my doctor is still in denial herpes is causing all of this but I just know that it is. I guess tr immunologist and infectious disease specialist will help me.

 

I am just scared. Not getting better and without typical sores I can't convince anyone I have these symptoms from herpes Ben w positive blood test. I am just so frustrated.

 

 

[willow]

Hopefully when u shove that paperwork in ir doc's face he/she will realize that its actually real amd be more efficient with helping u!

Hang in there chikadee!

[Amillionthings]

Aww white dasies. Can see u feel like shit. Im sorry youre having a tough time. Xx

[Amillionthings]

And also...u have all this going on...and u still found time to support me on my thread. It means alot. Youre a good persin :) x

[whitedaisies]

Thx. Happy tears for me from ur post. Really tough week.

 

I love helping u all. U are the people who keep me going everyday.

[WCSDancer2010]

It sounds like you are having some kind of over-reaction of your immune system ... hopefully the infectious disease specialist will figure it out ...

 

(((HUGS)))

[Jayz]

I had HAEM - herpes associated erythema multiforme. My dermatologist assured me that it is not contagious - it is not the same thing as herpes lesions. Are you sure that's what you have though?

 

Here's my story: June 24 I had my first OB of genital herpes. I was in Ecuador, scuba diving at the time. I didn't know it was HSV until I got home and had the PCR test. Ten days after the OB I woke up with itchy bumps on my fingers, which kept getting worse until they were all over my legs and hands (not much on actual palms). I went to the ER (it being July 4th weekend) and the Ecuador trip got them thinking of water parasites and things like swimmer's itch. A day later I saw a local dermatologist (my regular one is in the city an hour away and harder to schedule on short notice). I told him I was recently diagnosed with HSV, and also about the Ecuador trip. He literally waved off an HSV connection, ran through a lot of possibilities, and was also stymied.

 

So I did get in to see my regular dermatologist, on the 8th - three days after the bumps appeared. I had been taking benadryl to help with the itchiness. It looked horrible, with red splotches and bumps all over my hands and feet. She started asking subtle questions about possible HSV signs and I told her I had just been diagnosed. She had immediately suspected HAEM. When I told her the other dermatologist hadn't figured it out she said "but this is classic!" - she was onto it right away.

 

She did assure me that it was not contagious and it would heal without scarring. By the 4th day the itching had subsided and by the 6th day the red splotches/bumps had gone down enough that they weren't so immediately apparent (it helps that I have freckles anyway). By ten days they were really going away and by two weeks or so they were gone with scarring.

 

I am a male. It is typical that the HAEM appears about 10 days after an HSV OB, like mine did. I understand that 20% of HAEM case are recurring. I hope not! I also hope I have no more HSV OBs. At least I'll know what it is know that it passes relatively quickly. I have a bottle of valcyclovir ready if I feel an OB coming on. I am taking acyclovir 400 mg daily, because I am in a relationship and want to minimize the chance of transmission (the HSV, that is).

 

One lesson: find a good doctor! the first two couldn't figure it out (I don't fault an ER doc though) but the third doctor knew right away, and knew all about it.

 

One question: has HAEM been diagnosed? I don't think neck and legs sounds like it - it is typically just hands and feet. Also -even my super busy doc got me in on short notice - you can't get a sooner appt than a month away?

 

Good luck and let me know if I can answer anything else about it - I haven't seen HAEM discussed on here (but I haven't looked).

[whitedaisies]

I luv u. Thank u!!!!!!

 

I am going to derm Tuesday. I will let u know. If u think of anything else. Feel free to post!

 

Xoxoxoxox

[Amillionthings]

Happy tears r good....and some times sad tears are too.....its just a physical sign youre able to let it all out. Well if it makes u feel better. I was in a shitty shitty place and your kind words lifted me up...theyve helped me to build some courage to deal with some shitty stiff and boosted me up. I dont think anything i say can help much....but i will say u arent on your own. Support is here :) x

[whitedaisies]

Thx!!!! U did say something to make me feel great!!!!

 

I luv helping people and connecting wih people and herpes let me do that in a way I couldn't before.

 

I just really wish and hope my body will adjust soon it has been 8 long months and I am tired.

 

I am scared. And that's not fun.

 

Have lots of happy and sad tears.

[whitedaisies]

Jayz

 

Did u have muscle ache or pain at all with it?

 

Also did the doctor mention disseminated herpes at all?

 

What did ur bumps look like and how can u distinguish them from an hsv outbreak?

 

I am pretty bad wih repetitive episodes of em or it's disseminated herpes or both I have no idea. Need to get to a specialist.

 

I just hope I don't have this forever. It's absolutely horrific. I am on valtrex

Em episodes not getting less.

 

I am at a damn loss. Te medical system has failed me.

[Jayz]

No, I did not have any muscle ache or pain associated with it.

 

The doctor didn't mention disseminated herpes. It was very clearly HAEM.

 

The bumps started out like warts or mosquito bites - not a different color, just bumps (and itchy!). They kept me up at night.

 

Then they started to turn red, like blood (that's the erythema). They were never like fluid-filled - no blood or puss or anything. I would not describe them as lesions, not at all like the genital OB. But the red blotches got much bigger than the bumps themselves and that's what you'd see on my hands: red blotches, more than the actual bumps.

 

They didn't need medication and started to resolve themselves quickly. Once the itchy stopped after four days or so, it wasn't a big deal. It looked gross but only for about four or five days, and I wold keep my hands down and not shake.

 

I am really sorry for your suffering and fear - hopefully you'll get some answers. Let us know!

[whitedaisies]

Thank u again. :)

Xo

[whitedaisies]

I hate posting negative posts. I am so sorry if I am bringing everyone down.

[Jayz]

No! You're frustrated and scared, I don't blame you. This is a supportive place and we're here for you. Don't feel you need to hold back.

 

Just try not to bring yourself down too much - you don't need to suppress your feelings but your health will be better if you can reduce stress and negativity. Easier said than done, I know . . .

[whitedaisies]

I will try but 8 months is really hard to endure. I am a strong person but Ven this is taking it's toll on me.

 

I am 42, fairly attractive, in good shape, intelligent, have a professional designation, had 3 beautiful children and I can't fuckig fight this stupid virus! This benign virus that medical professionals think is harmless and no one wants to iinvet money in research so I will never be rid of this. I will spent the next years of my life suffering with a disease that doesn't allow for human touch when that I what I need most right now.

[whitedaisies]

Mine are on neck, face, hands, legs. They are tiny little bumps most times that are pale pink in colour or sometimes skin colour. Sometimes I get ones that start off as hives and progress to little mosquito bites. They never turn red like blood, but they do itch like hell before they come adn then itch when they come. They are not painful but sometimes I feel pain before they come. I also feel tired.

 

Anyway, I really hope people can rally around this cause and get doctors educated and governments willing to invest in better meds and research and cures as well as support for people with this virus.

 

I thank you all for your encouragement and support as it means so much to me. I finally feel like I belong somewhere and am accepted. Unfortunate I had to become so ill. Here's hoping I get better soon.

 

xo

[whitedaisies]

Ok last post....I know I seems silly but my legs were always my best physical feature. My skin was soft and smooth and I have really nice olive skin bc I am European. And now all these bumps are on them and I am scratching bc they are itchy and they are scabbing and scarring and my legs aren't beautiful anymore. And that on top of everything else is difficult. My one part that I was really happy about; this virus took away from me too.

[lm44]

@whitedaisies first, you're amazing for sticking to your guns and advocating for yourself - I am so sorry you doctor has been a complete D*CK (can we swear on here?) & your partner was a complete fool to let someone as strong as you go. You've gotta feel what you've gotta feel which is angry and negative because hell who the f--- wants to live their life with a virus, especially when it is causing you all these other medical concerns. No one does, but so many HAVE lived their lives fully and will continue to do so. Sending you love <3 L

[Jayz]

I'm sure this will pass, just hang in there! You might always have HSV, but these weird outbreaks and erythema, I'm sure that will pass. Then it will all seem like a bad dream in the past.

 

I had lyme disease for a couple of years. Yikes - you should see the online forum for those guys! Talk about feeling abandoned by the medical establishment. The helplessness and suffering, and feeling of incurability. But I did get over it . . .

 

Then seven years ago I was diagnosed with Crohn's disease and they said it was incurable. Again, the online support forums are pretty bad - people having surgeries to remove parts of their digestive system, people on really restricted diets and limited freedom. Now - as of last week! - they say I don't have it anymore. I never know what to believe.

 

My point is that we often get freaked by our current health situations but then we adjust to our new reality, and often/usually the worst of the symptoms pass. And then it's like it was all a bad dream. I have no doubt your beautiful legs will be just that once again!