Baseballfan

Just an awful feeling watching this reaction to a virus scar my wife's beautiful skin on her arms and legs --- who would have ever thought ---

Thank you so much --- you have provided me with a lot of info. I'm just so helpless right now--- can't seem to stop this virus.

Plan to bring up infectious disease doc and possible antiviral via IV with her next week

Three derms at three major university's across Ohio can't figure out why this is still going on. Doc at UC said she has never seen a case of EM go this long. So we are in uncharted waters right now with her .

No --- not yet --- just had a test on that and she is not.

We have been mixing it with water, tossing in an emergency c packet and also echinacea drops. Actually doesn't taste bad but I will increase the cider a bit. How do we avoid physical activity? We are trying some. We are planning to go with our youth group zip-lining in a couple of weeks. We can't stop life but at same time we need to take precautions . She said she is not going to let this stop her. Still amazed that she --- we---- have had HSV for many years and it chose to react this way all of a sudden. I have never had an outbreak and hers were always limite to her knee for a week or so then go away. Now her body is having a reaction to the virus. It's so confusing. Thanks again

Two tablespoons ?? Ok --- we can do that . Lousy taste though. Lol We will try to limit physical activity and heat when at all possible. But yesterday morning she was doing so much better then bam -- it hit. Has done some this morning. Just wish we or our doc knew of some way to put this HSV virus down--- if that's what is driving this . Acyclovir seemed to work then she had EM breakouts now she has one on famvir --- not HSV breakouts but EM breakouts . Thanks for advice. One day this will all stop!!!!

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 .

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.

Good idea!!!!! Thank you --- I had been wondering about that! Much appreciated.

Thanks for your help and prayers

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

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.

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 !

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.

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.

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.

Hi What ever happened with your issues of EM? Curious cause my wife has it as well Thanks

Thanks--- I feel the same way --- As far as findng a doc who specializes in this -- EM -- it's tough. We have been to three major universities. Last doc we saw told us she has never seen it go this long (five months) so this is new territory. My wife has been on famvir for only one day so we are going to see what happens. Any suggestions on finding a specialists but that would mean going to a new doc and having more biopsies done --- she has already had five holes punched in her. This is so strange. She feels fine and has not had an OB of H at all.

It's been going on since mid March -- the first two months were horrible -- but it has tapered down a bit but still there. She has new small mouth sores and a few on her leg and arms. They will go away in a few days usuly but still pop up. She was positive for ANA but the rheumatologist ruled out anything auto immune after several blood tests. We just got word today that her Derm is going to switch Her from acyclovir to famvir and try that. We have read where famvir can be beneficial in patients who do not respond totally to acyclovir. The only meds she is on right now include acyclovir, avapro for high bp, thyroid medication and birth control. Been off every thing else for a few months now including all otcs. Goin to try famvir and garlic tablets (yummy).

The only steroid she is taking is a creme -- to help with the sores --- she was put on prednisone initially after she reacted to valtrex to get the swelling in her lips down -- but that was in late March.

Thanks It all started after she took Cipro -- but that was six months ago. One Derm wants her to go off birth control which she has been on for 28 years. We are considering. She was put on valtrex at first and had a bad reaction to it --- that's why we are suggesting famvir -- Also what is EBV? We saw a rheumy two weeks ago --- nothing autoimmune so far but he was checking for Lupus.

She is positive for HSV 2 --- she's had it for several years with no issues other than it appearing on her knee every other year --- it's crazy!! Now this. Where did this come from? She continues to get "little sores" in her mouth -- thank God for magic mouthwash. We may visit with a infectious disease doc --- we also are going to consider switching to famvir early next week. I was told she should not be having any more breakouts while on acyclovir -- she's been on it for three months now --- some relief but not total suppression like all the trials suggest.

We are --- that's a long process -- we have stopped several meds but there are a couple she cannot stop --- one Derm feels it's a medicine but most derms feel is being driven by HSV --- the medical community cannot seem to agree on this one. The Derm we just saw this week says she has never seen a case last this long. We are going to add a garlic supplement to her diet because garlic is supposed to be a natural viral suppressant. It seems if it were HSV related that the acyclovir would work however she is not having any HSV OBs --- she hasn't for a log time -- that's what is perplexing. One Derm literally gave up on her and said she didn't need to make any more appointments. The one we are staying with is concerned and trying to help. We might try famvir if these little "Pop ups" continue to increase the acyclovir dosing from 400 mg BID to either 1200 or 1600 And see if that works. Keep praying. Thanks

Thanks We have seen a rheumatologist and an immunologist as well. No issues there. Thanks. All we have left is prayer and faith --- and that will prove to be enough to get through this.