Help!! Recurring rash is actually herpes outbreaks

[Toooldforthis]

I am 54 years old, have been married (and faithful) for 30 years. I have had recurring rashes on my buttocks over the past few years but they have been mild and I have not paid much attention to them. In the past month I have had three outbreaks (in three weeks) and so I went to my dermatologist. She diagnosed herpes (I was really confused and upset). There's been no out of marriage sex so my husband and I are thinking this has been hanging around for a long time. He has no symptoms. My doctor started me on Valtrex but I had a severe reaction so cannot take that class of medication. I only have acyclovir ointment to use and that has not helped at all. Any help is greatly appreciated. Thanks.

[Toooldforthis]

I am 54 years old, have been married (and faithful) for 30 years. I have had recurring rashes on my buttocks over the past few years but they have been mild and I have not paid much attention to them. In the past month I have had three outbreaks (in three weeks) and so I went to my dermatologist. She diagnosed herpes (I was really confused and upset). There's been no out of marriage sex so my husband and I are thinking this has been hanging around for a long time. He has no symptoms. My doctor started me on Valtrex but I had a severe reaction so cannot take that class of medication. I only have acyclovir ointment to use and that has not helped at all. Any help is greatly appreciated. Thanks.

[WCSDancer2010]

@Toooldforthis

 

First - hello and Welcome :)

 

Yes - it is possible that you have carried this for quite some time. I have a client (I'm a Massage Therapist) who had her first OB after 32 years of marriage.

 

However, have you actually been blood tested or swabbed? If not I suggest you go to your OBGYN and get tested. It could well be something else and there is no use going on the anti-virals. I would also get your hubby tested - if you both have it then you only need to go on the Anti-virals to deal with the OB's.

 

But given that the Acyclovir ointment isn't helping, I'd want to get tested before you go any further. If you can, get them do to the Western Blot rather than the regular blood test. If you have blisters, get them swabbed.

 

Keep us posted about how things turn out. One thing I'm glad to hear is your hubby seems to be standing by you and not putting blame on you....it's a tough one for people to understand that Herpes could be dormant for so long ;)

 

(((HUGS)))

[Toooldforthis]

Thank you for answering! I can't tell you how much it means to me. I am returning to the doctor tomorrow and will ask her to please test the area to see what it is. Maybe it's recurrent shingles if there is such a thing. Thanks again and I will keep you posted.

[ra1956]

Hi,

 

I would hope your dermatologist could tell the difference between shingles and herpes. But heck they are in the same family so who knows. And yes you can get reoccurring shingles - mother still get them after having the shingles vaccine - maybe just not as bad.

 

Do as Dancer suggests and get back to the doctor have this confirmed.

 

Take care - Ra

[WCSDancer2010]

Don't go to a Family Dr ... I'd suggest OBGYN ... dermatologist maybe... but definitely not Family Dr. They are usually terribly behind on their knowledge. Not sure about dermatologists... you may want to print out the info on the handouts and have it with you...

 

Handouts:

http://bit.ly/h-opp-diagnosis-handout

http://bit.ly/h-opp-disclosure-handout

 

Disclosure e-book:

http://eepurl.com/b4IPP

 

And yes, it *could* be shingles... let us know what happens :)

[Toooldforthis]

Ok, so went back to the doctor (dermatologist). She would not do any testing and instead referred me to an infectious disease doctor. She says it doesn't matter which form of herpes it is, the treatment is the same and if I can't tolerate the usual treatments, she is out of ideas. So off to another doctor I go next week. In the meantime, my third outbreak in three weeks is totally depressing me.

[WCSDancer2010]

UGH - it DOES matter because it helps to know so you understand the implications for your PARTNERS.

 

Forget Infectious Disease Dr... get thee to an OBGYN or Planned Parenthood. They deal with this all the time. And print out the Disclosure doc and take a copy to the dermatologist and show her the info on shedding and the like....

 

Gawd I am getting soooo fed up with the Medical community ~X(

[WCSDancer2010]

In the meantime - try taking 1000mg of L-Lysine and try Epsom Salts baths (sit in the tub of warm water and drop about 3-4 handfuls of salt between your legs so it's concentrated in that area.). And DO remember that the first few months are the worst.... 3 weeks is NOT a lot of time in the timeline of your life. Try to look at this as a minor blip in your life... not as "the world is coming to an end right now". Change your outlook and you can alter how you experience things ;)

 

 

(((HUGS)))

[ra1956]

All,

 

I don't know about anyone else. But am extremely upset with all the clueless and seemingly uncaring Doctors people are dealing with for hsv2.

 

Knowing if you have shingles or hsv2 is a big deal - there is a vaccine for shingles that could be very helpful even if you can't handle the standard medication.

 

Agree with dancer - get to someone that has clue and get a proper diagnosis.

 

Take care - Ra

[WCSDancer2010]

I just PM'd Adrial that I am about to go postal on the Medical community :p

 

[Toooldforthis]

I am going to my ob/gyn in two weeks. I am sure she will test if I ask. And you can be sure I will ask. My hope in the meantime is that the infectious disease doctor has something she can prescribe that is not in the valtrex family of drugs. Anyone else have such a bad reaction to that med? I will also ask her for a shingles vaccination. I am 54 so even if it isn't shingles, it can't hurt, right?

 

I do not understand why we don't yet have a cure for this virus.

 

And Dancer, if you do go postal I am sure you will have a large supportive crowd behind you. Hey, I made a joke! That is progress.

 

Thanks you guys, you are awesome.

[WCSDancer2010]

To my knowledge there are no other drugs... again, try the L-Lysine 1000 mg.

 

What was your reaction to the Valtrex?

 

Regarding why there isn't a cure - it's not life threatening. Doctors/researchers have much bigger fish to fry. AND, they were talking of a cure back in the 80"s when HIV came along and all the funding went towards that because it IS life threatening. The good news is that hopefully research for HSV may be able to use what they learned from HIV to create a vaccine and/or cure.

 

 

[Toooldforthis]

Valtrex-severe headache, nausea and hot flashes. In bed flat out sick. I told the doctor I would try again but (and I think this is her malpractice talking) she said she wasn't comfortable with me taking the drugs. I will try the L-Lysine 1000 mg. Is there a brand you recommend? I am a supplement skeptic but also, I am desperate. :-)

[WCSDancer2010]

Twin lab or Now are good companies for this - unlike an herbal supplement, it's easier for labs to keep a product like Lysine consistent and stable. So any well known brand would do - go to a Health Food store and they should be able to direct you to a good brand. And BTW, I'm not a supplement nut either bit there IS research that Lysine helps to knock HSV down in some people

[Toooldforthis]

Ok, thank you, will do.

[Toooldforthis]

Ok, so an update. Went to the infectious disease doctor--she was wonderful--but since I had no active lesions, she could not diagnose herpes for sure. She wants me to come back as soon as I have another outbreak so she can do a swab test. She said that a blood test is not worth much since so many people test positive to 1 and 2. Also now am on acyclovir (bad reaction to Valtrex) orally. This doesn't seem to be the usual pattern with herpes--it started very minor a few years ago--and now is getting more severe with each outbreak. I know I feel much more confident able to take the drugs. I still am reacting to the drug but less severe side effects. That's the story for now. I am just hoping to avoid the weekly outbreak cycle. It's a killer.

[WCSDancer2010]

She said that a blood test is not worth much since so many people test positive to 1 and 2.

 

Maybe that's because they HAVE HSV :p

 

(((HUGS))) Keep us posted

[ra1956]

Thanks for update.

 

Sounds like your new doctor is better, but still very clueless on hsv2 testing. :-(

 

Just in your case - still would want to know if I had shingles or hsv2?

 

But the acyclovir should work to help suppress either.

 

Take care and good luck on your journey.

 

Ra

[Toooldforthis]

@ra1956 I would like to know what I have that's for sure. As soon as I have an answer I will update all. This site is a godsend, btw. Thank you.

[paullpaul]

Your outbreak could be herpes zoster or HSV. The only thing that herpes means is that the virus lives on the nerve root in a latency phase and then outbreaks periodically. Varicella zoster is colloquially known as chicken pox and herpes zoster is when the virus recurs and is known as shingles. Either can occur within the buttock region. The reason your doctor told you that it doesn't make a difference which one it is is because the treatment options are mostly the same so the course of treatment wouldn't change regardless of the outcome. However, WCSDancer is correct in that preventative measures could be used for your partner if you do in fact have HSV. In your case, I would recommend testing for HSV antibodies for both you and your partner. If the test returns negative for both, then HSV is pretty much ruled out as long as it is true that both parties have not participated in any extra-marital affairs. Either way, there are many treatment options that can be used to help treat the pain other than anti-viral medications. You can also receive a shingles vaccine which may help future outbreaks. In my opinion, your symptoms are more consistent with Herpes zoster and not HSV.

[Toooldforthis]

Thank you @paullpaul. I was able to stay on the acyclovir for five days. After that I had to stop due to side effects. I am just waiting now for the next outbreak so that I can get a proper diagnosis. Have an appt with my ob/gyn so I am curious what she will say/do and whether she has alternative treatments in mind. Mostly though I would just like to get over the fear factor waiting for the next outbreak. I am trying to carry on as I did before diagnosis when I thought it was just a recurring rash, but it's depressing nonetheless. It's amazing how a one-word diagnosis can rock your world.

 

[WCSDancer2010]

Toooldforthis..

 

When you have a cold, do you sit and wait for the next one? When you stumble and fall, do you stare at the ground with a magnifying glass just in case you might stumble again???

 

Worrying about the next OB is just as crazy as those examples.... its up to you to loosen the grip of the H word ;)

[Toooldforthis]

WCSDancer you are so right. I have been trying to just relax about it and it's working somewhat. And while I was relaxing there it was again! But I did not freak out, just put it on the calendar because I am trying to keep track, made another doctor's appointment and chilled out. I seem to have an ob every three weeks or so, which seems like a lot to me. But at least I am calmer about it.

[WCSDancer2010]

Every 3 weeks may be a hormonal issue.... if you know that is the cause you may be able to do some proactive things like take/increase your antivirals and go commando/keep the area well aired and dry.

 

(((HUGS)))