Erythema multiforme from hsv ugh

[whitedaisies]

Wow jayz u know just what to say to make me feel better. Thx for always responding.

 

I hope I wake up soon.

 

Sounds like u hae been thru ur fair share. Glad u r on the mend.

 

Xo

[Jayz]

Ha! And I think I tore my rotator cuff windsurfing! Seeing an orthopedic dr this afternoon. Ouch!

[whitedaisies]

WTF!!!!

 

U r on a roll!!!!!

 

Maybe my life isn't so bad. ;)

 

I actually am going to the h opp weekend and then staying on the beach for a week. Maybe I was goin to try surf lessons but maybe I should wait til my luck changes. Lol

[WCSDancer2010]

Yeah - regarding Lyme disease ... if people think they have it bad with H, you should get to know someone with chronic lyme. I know several and you talk about debilitated ... frustrated, and clueless doctors??? Yeah.... THAT is something you don't want and you get it from trying to do something "healthy" like a walk in the woods ... talk about unfair!

 

@Jayz.. glad your "croans" seems to have cleared up - my step brother has that and it's really a nasty disease :(

[whitedaisies]

Well, dermatologist today, of course no bumps to show for....isn't that always the case. Booked a follow up a week before my next period...that's usually when the bumps come. She doesn't think they are herpes or erythema multiforme...just random bumps for no reason....really?! WTF! How stupid are these people!?! Anyway, she has agreed to biopsy them if I can manage to come in with some visible.

 

Ran out of Valtrex, family doc won't give me anymore b/c he said I am overusing them....I haven't even hit a year of suppressive therapy....only used them 5 full months. He wants me to wait to see an infectious disease specialist....God, that's going to take forever! I am all for getting to a specialist, I have requested it for 5 months and he's finally doing it but it's going to take me another 2 months at least to get seen! UGH!

 

So now I am petrified I am off suppressive therapy and I was having symptoms on them....so scared they are going to get worse. No sex still, nothing even close to it. Luv reading everyone's posts on how much they are getting...still somehow wish that could be me.

 

I have my gyno on Monday, I have a positive blood test to show her; she seems like a compassionate lady and will likely be helpful...so just have to wait a week for that.

 

I can't believe what a damn rollercoaster this is?!?! How is it possible for herpes to be that much of a sneaky shit to cause all this chaos?!?!?!?!? Still can't get a positive swab.

[Baseballfan]

Hi

What ever happened with your issues of EM?

Curious cause my wife has it as well

Thanks

[whitedaisies]

Turns out I don't think its EM. I actually think I may have an autoimmune disease that was triggered by a new hsv1 infection.

 

I believe the autoimmune disease causes rashes or bumps for me along with nerve pain and itchiness which mimics herpes

 

All my swabs have been negative to date but I have positive hsv1 via blood test with no proof of seroconversion. So I will never really know.

 

I am focusing on my overall physical and mental health for 1.5 years since sympyoms started and although fatigue is there a lot... Fibromayalgia is lessening quite a bit and the frequency of either h or the autoimmune rash is decreasing.

 

Hoping I am on the road to recovery and nothing else triggers another flare.

 

I wish you and your wife well. Take each day as it comes...look no further and one day you will wake up and be thankful it's over.

 

Xo

[Baseballfan]

Thanks

My wife does have HSV --- but she has had it for years and this outbreak just stated five months ago. She has had two biopsies that states EM -- but with no cause. Can they be linked to HSV? She has been on acyclovir for three month with some improvement -- however just chaned to famvir with more improvement -- just having little pop up sores now.

We just want it to stop.

 

[Baseballfan]

She was tested for autoimmune but was ok -- she just has this rash that covers her arms a legs -- she feels fine but has to wear long sleeves for now -- lousy for summe time so I am too to support her. We hope the famvir works along with garlic pills. Her initial EM outbreak was severe as was her second. Since she was put on acyclovir it has helped but not completely stopped the rash --- so we went to famvir after three months on acyclovir praying for complete healing. We have been to three derms at major universities --- one feels it's being driven by meds while the others feel it's HSV related. So frustrating.

[whitedaisies]

I understand ur frustration. I am kind of in the same situation.

 

You are doing everything you can do. And supporting her in the process. Really wonderful of you.

 

It can be caused by hsv yes or drugs. Hard to tell. Sounds drug related to me. I went to see a therapist to help me deal with the not knowing part. It can be quite stressful when u are going Dr to dr. Perhaps you and your wife can try that while you go through this too. It's really an exhausting process

 

But all I can say is hang in there.

 

Xo

 

 

[Baseballfan]

Thanks for the encouragement -- it's hard to stay positive sometimes. Do you know a good Derm? We are seeing one now at the university of cincinnati who is nice and caring but told us last week this is sort of new territory since she has never seen EM go this long. The Derm we saw at Ohio state university was completely no help and did not care and one we saw at case western university hospital in Cleveland really provided no new insight.

She got up this morning with a few new spots which was discouraging since she started famvir Saturday. We were hoping to see nothing new!

We are entering into month six now with EM! All derms have told us it should be gone by now. If you know of an expert please tell me. We live in Ohio but will travel anywhere to get proper treatment.

Thanks.

[whitedaisies]

I don't know of anyone in particular no.

 

Is it possible for her to go off most drugs to see if sthng she is still taking is a trigger. Have any Dr recommended that?

 

I am learning as I go of who and when to see certain doctors. I don't have much more luck than you.

 

If a doctor is nice and caring imo stick with Her. Compassion of a medical profession goes a long way in treatment. If it's new territory for her that's fine....perhaps suggest if she recommends anyone else. Sometimes when I would see specialists they would know of other specialists and referred me to those.

 

Your wife may have a few things going on which makes it hard to tell what's related to what and what's unrelated which really helps in diagnosis and proper medical treatment. It's difficult for any professional really.

 

Best you can do is focus on her general mental and physical health. Sometimes things settle down a bit when we get on the right path there. In the meantime, be patient a bit. If it's decreasing that's a good sign. Keep in touch with your doctor and monitor your symptoms.

 

Sometimes before we know it it turns the corner. It did for me. So I am hoping the same for you

 

Xo

[Baseballfan]

Thanks so much.

She has gone off most of her meds but cannot stop all of them --- i.e. Thyroid med, BC and high BP meds.

We hope the new antiviral works. It's only been 4 days. However she was on acyclovir for three months and we think she is allergic to valtrex because he lips swelled up in 2 days after she was put on that at first.

It's so weird because she feels completely fine other than the red little bumps on her arms and legs --- I love her cute legs too --- wish they would come back. :)

This all started in March following a tragic death in our family. She came down with a sinus infection at the same time and could not rest due to the funeral . She too a z-pack and that did not work so she was put in Cipro which worked. Five weeks later the rash and blisters took off. One doc feels the sickness and meds might have triggered her HSV infection. It's minor now compared to when it first started and all are baffled why it's still going on.

Thanks for letting me rant.

Keep prayers alive that this will stop !

 

[Danaaaaaasaur]

I'm sorry you & your wife are going through this it must be really tough :( I remember seeing a guy on a different forum who had herpes & ended up being diagnosed with EM along with something else...I'll see if I can find it again just in case it's any help. Also I'm not sure what you've checked out on the Internet (or what treatments your derms have tried already) but this article talks about a trial where people were infected with herpes & had recurring EM. Not sure if it's any use at all but it is an interesting read at the very least http://www.aafp.org/afp/2006/1201/p1883.html

I hope the EM clears up soon!

[Baseballfan]

Thanks

Believe me I have become an expert on this. There is only one thing that can be done and that is control the virus with antivals --- which is not working completely -- if that is indeed the cause. She was acyclovir for three months and now we have switched to famvir --- might go back if this does t work in a month or so. It's just so frustrating cause we are told it will go away -- and it's not.

Thanks for any input.

 

[Baseballfan]

All info on web says EM resolves in 2-6 weeks --- not in our case.

[Baseballfan]

Thanks for your help and prayers

[2Legit2Quit]

@BaseballfanBaseballfan I highly recommend seeing an infectious disease doctor and see if you can get her antivirals by IV. much more effective that way

[Baseballfan]

Good idea!!!!!

Thank you --- I had been wondering about that!

Much appreciated.

[WCSDancer2010]

Also, do try some of the things we suggest to help control HSV like Epsom Salts baths and such ... we have a lot in the links below. I'd even try the Alum because it will really dry it out ... Bactine may work too (and you can find it faster) as it is an anti-viral (its the EXACT same thing as the Oragel Single dose and a LOT cheaper and the lidocaine will help to numb any itching/tingling) ... anyhow, try these ...because with HSV if you attack it from the outside and get that under control, often the body can take over..

 

And from what I understand, her lesions aren't actually the HSV virus ... its a reaction to the virus ... but at least this may help to get the lesions to clear up faster until her body can catch up :)

 

Treatments/medications

http://herpeslife.com/herpes-forum/discussion/6024/dealing-with-outbreaks#latest includes links below

http://supporttruthanddialog.com/easy-simple-self-help-tips-for-relief-from-herpes-outbreaks/

http://herpeslife.com/herpes-forum/discussion/4810/bactine-for-oral-and-even-genital-herpes

http://herpeslife.com/herpes-treatment/

http://herpeslife.com/herpes-medication/

 

http://www.cdc.gov/std/treatment/2010/genital-ulcers.htm#hsv

 

Links to some of the items suggested in the links

http://amzn.to/1CHUzZE Link to Alum

http://tinyurl.com/Aloecream

http://amzn.to/1F10r3V Fractionated Coconut Oil

http://bit.ly/zincsoap Zinc Soap with coconut oil

http://bit.ly/Zinccream

http://tinyurl.com/bactine

http://tinyurl.com/Oragelsgldose

http://tinyurl.com/DMSO4HSV

 

[Baseballfan]

Thanks so much for taking time to send the info --- I'm checking into all of it asap!

It's so strange -- my wife has not had an HSV sore through all of this --- only this silly EM sores.

We are encouraged -- her residual pop up sores are subsiding in frequency and duration . We hope the famvir is working and that her immune system is getting stronger .

We heading into month six now since this started. Simply unbelievable.

[2Legit2Quit]

I'd also give organic apple cider vinegar a shot w soaking in a bath of it and two table spoons of it a day. My friend baths his kids in it when they have an attack of eczema and it heals it right up.

[Baseballfan]

Thanks for the advice :

She had a breakout of EM yesterday --- all over arms and legs while moving son to college.

We will look at apple cider vinegar -- we take a teaspoon a day mixed with water --- might try in tub but she has not had an HSV outbreak in more than a year --- only this stupid EM places

On her legs and arms ---

Doc says to Give famvir at least three weeks. Ugh.

Thanks for advice -- keep them coming .

 

[whitedaisies]

I know when my daughters bad hives from viruses when they were little, they always got worse after sweating or heat. Try to limit her physical activity for a while and keep her cool til she can Shake it.

 

It may help

 

[2Legit2Quit]

Actually it is two tablespoons a day you both should be taking