Baseballfan
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Posts posted by Baseballfan
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We saw infectious disease doc when this all started. He referred us to dermatology. We asked about antiviral via IV and was told by doc it doesn't have any advantage. We will ask again tomorrow when we see Derm/immunology at university of cincinnati.
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We thought same thing but this rheumy was highly recommended and told us she does not have an autoimmune disease and the low titer score of 1:160 did not mean she had autoimmune. He took six viles of blood and said all looked good. Our Derm --- who is also an immunologist tested biopsy for lupus and said it was not lupus --- we are so confused. Our normal life has put on hold. Back to Derm tommorrow for more biopsies. Beginning to wonder if this is going to stop. Very discouraged and an amazed how an HSV she has had for years can suddenly take control of er skin.
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Initial explanation from ana report said possible SLE or drug induced lupus --- both have been ruled out.
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Her ANA was positive -- 1:160
Rheumotologist did testing --- determined nothing autoimmune .
Derm doubled famvir dosing Friday --- had a good weekend then woke up Sunday with a couple of new spots. I just can't understand why this is happening. We are going back to see Derm mo day because of infection from her biopsy spot. Completely discouraged--- my wifes skin was so beautiful . Why did this happen to her now? She's had HSV for many years with little or no complications. Made appt with mayo clinic in Florida for late October.
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Thanks
Our derm we see now is also an immunologist and said she does not have lupus --- no other symptoms and biopsy said no SLE.
Just Lousy EM rash what she feels is being fueled by HSV infection that will not go back to sleep or go into hiding.
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We are patient but we want this to stop. She might developed a reaction to sunlight through all this. Her skin outbreaks seen to come right after she has been outside . How do you test for that? Is that something a rheumy would test for?
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Lol
My wife is only having erythema multiforme skin rash outbreaks --- still no visible HSV symptoms --- she's not had a visable one for a couple of yeArs still Derm thinks it's linked to HSV. We have made appt at mayo clinic and she is going to go off BC . Also she is gonna double dose of famvir and see what happens. Pray this stops!'
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How did you get it under control?
She took acyclovir for 3 months and now is taking famvir and has had two EM breakouts since switching ---- her HSV has still been silent through this entire six month ordeal
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I just cannot understand how she could be having a an EM reaction to the HSV virus now after she has had it for many years without any real complications.
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We saw an ID doc during her initial outbreak which was severe. He said it lookedi like EM because of the mouth sores and blisters and put her on Valtrax --- which made her lips swell up two days later so we stopped. That's when the doc referred us to a Derm at Ohio state who told is it was EM and that it would go away and never come back --- that was in March --- boy was he wrong.
Today she is having a minor outbreak on her hands and wrists again --- obviously the famvir is not working. We are at a total loss as to what to do now. We are so frustrated and scared .
Thanks for your support.
Every doc --- except one out of the nine we have seen--- thinks since she has an HSV infextion that it is driving this. No way to stop it either even though her HSV spot has never presented itself during this entire ordeal.
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I'd just like to talk to someone who has gone through this --- we are told by docs they see this a lot but I can't find anyone who has this EM at all!!
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exactly --- but that's the only way docs treat this --- unless of course they can find a med that might be causing it.
Just has not been enough research on it. They could eventually use dapsone or thilidamide as a last resort. Or she could go off BC!!!
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She has not had an HSV outbreak in about 2 years!!! Also we do not see an endo --
That's what is so strange about this whole thing --- she would get an HSV blister on her knee about every other year and it would last a week or so and then go away. It has not been presented at all during this entire EM ordeal.
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I'm tryin to talk into going off BC --- like I said one Derm said it might be a trigger to this EM while a specialist Derm said the BC probably did not cause it but rather her HSV --- id just like to get the same opinion.
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She will soon be 51 --- ugh no health issues Til this happened. I volunteered to "get snipped" but she does not want to go off pill yet for fear it will toss her into full blown menapause.
It's just so hard getting the right doc and getting into to see them without waiting a month or so. She said she is having a good day and wants to give famvir a chance to work if it is EM related to HSV. Who knows at this point. Hope we don't miss our golden years together for this mysterious disease without a cure at the moment.
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Different derms differ on cause. One says its viral but antivirals are not working 100% of the time and another thinks it's caused by meds and wants her to go off birth control--- she is hesitant to stop BC at 50 --- but that might be a last resort.
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Thank you for your support!
If that is the case then how does it stop? Antivirals are not working --- only about 80 % is tampered down but she keeps having less violent outbreaks on her arms/legs and mouth.
Thanks
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Correction --- entering month six
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One Derm wants her to stop birth control pills --- she has been taking it for years. We might consider.
One likelihood is that her illness in feb might have been EBV -- which explains why antibiotics did not work --- then the z-pack followed by Cipro might have triggered something.
This is still going on --- entering week six.
Thinking bout going to mayo clinic.
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Sorry --- the sores were in her mouth -- not on her lips.
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We can see---
Her gyno did the test - a folicle stimulating test and it came back that she had not started --- but then said if she went off the pill then she might be post-menopausal which made no sense. We have seen so many docs including a rheumatologist --
She had a bad weekend --- lots of little breakouts including sores on her mouth. These will go away I a few days but they should not be happening on antivirals .
We are exhausted -- no one should have to go through this without any real answers or solutions.
Thanks again.
We are at a loss on what to do now except contact our Derm again Monday to see what to do!
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I have to be there for her -- I love her and feel helpless as this EM keeps taking over.
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Sorry for some misspelled words --- hard to type on phone and it auto corrects (lol) I hate that.
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I love her --- she is my life --- we have so much fun together and now our lived had been a little altered by this. We have been told all along that this will go away -- but it has not ---
She is determined not to let this alter her life. She still goes to work every day and we take part in everything we have always taken part in -- we just have to be cautious of the sun right now I suppose. She lover me and I love her. I just hate this for her and I feel helpless. I'll call westovetheights monday .
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Erythema multiforme from hsv ugh
in General herpes discussion
Posted
I will look at endos and see where it goes --- the ID guy we went to in March is young --- he put her on valtrex and she had a reaction -- so he referred us to OSU derm. The one we see now is a young Derm and is an immunologist. I'll ask her bout IV . Thanks