I can't do this anymore

[OutOfWit]

I can't. I really just can't- had extreme pain while going to the bathroom and found a huge anal ulcer. When does this stop? It's been 3 months of outbreak. One after another. Antivirals are not helping. It's crushing my pride. My body seems to be getting worse at fighting it not better. I'm at the end of my rope.

[whitedaisies]

I know. I have been there. Some days I felt like mere skin and bones and nothing inside but despair.

 

But it will settle, I promise you. It just takes time. Focus on being in the moment and each minute not even hour or day. Don't project that this feelig will last forever because it gets too overwhelming and honestly, it won't last forever.

 

Do as much self care as you can. Try famivir maybe. Some people respond better to that.

 

Hugs

[OutOfWit]

What's scaring me is I've has this orally for over 20 years. Genitally for at least 7. Every outbreak is closer together to the point where they are daily. Have you heard success stories about famvir? I'm at the doctor to get checked. Actually in the waiting room now.

[whitedaisies]

They use famvir when patient has little success with. Valtrex. It's no guarantee but worth a try.

 

I am so sorry you are going through this. Get to an obgyn an ask them to check for yeast and bacteria. All have similar symptoms. Are you premenopausal btw? That can impact it.

 

Love

[OutOfWit]

Thank you so much. Just got back - lots of tears. The nurse practitioner is setting me up with infectious disease. She is concerned this infection may have gone systemic. She also believes I am resistant to valtrex.

[whitedaisies]

I am so happy u are getting referred.

 

I hve concerns too this went systemic. Why did ur dr think it was so?

 

My infectious disease specialist could not pinpoint whether I had hsv1 or not bc I had a negative with ELISA and positive with immunoblot which were conflicting. He ha no idea about western blot even though I told him. I had post viral syndrome which he diagnosed. He could have cared less to resolve if I have hsv1 or not. Doctors think oh it's h, it's been around forever, everyone has it, who cares. But a few people hve horrific symptoms. Sorry caught myself venting.

 

I have had a real rough time finding empathetic doctors and trust me I tried. Hoping you have more success.

 

I wish you all the luck and doctors that can be knowledgeable and show empathy.

 

Hugs

[whitedaisies]

Can u please remember to update your post with what infectious disease specialist says so it can help me as well? Thank u.

[OutOfWit]

I am so sorry your doctor acted that way. Many believe if it doesn't present how they read in their med books in school that it does not exist. As a nurse I know this. I actually just had an elderly patient who had a buttocks rash... Both sides. I went to the doctor and told her I thought it may be shingles or genital herpes. She looked at it and said no. I then went to the nursing supervisor who talked to her again and asked her to take another look. So this doctor grabbed two other doctors on the unit to asses- all of whom said it wasn't herpes. Needless to say I left for the day came back the next morning and she prescribed zirovax cream right after I left. And guess what? It worked. It's sad .... The god complex.

 

Are you having constant symptoms too? So he doesn't even know what type you have? Are you on antiviral?

 

My doctor thinks it's systemic because I had a breakout on the my thighs... Which spread to the calf and ankle area.

 

[whitedaisies]

I had no lesions. I swabbed all negative anything that came up. I think I get them internally.

 

It is horrible. Antivirals didn't work and don't do much now either.

 

It's hard to talk about.

 

I get bumps that I am swabbing myself they westover heights.

[whitedaisies]

I got western blot myself they westover to verify hsv1 +.

 

I have basically been my own dr. I think to be a dr u have to also be smart enough to realize that not everything can be put in a neat box. Anyway without a positive swab it was difficult.

 

Hugs

[OutOfWit]

That's exactly what you have to do! Wow so your self swab actually came up positive? I would be very interested to hear how I go about doing this, as I only got a visual diagnosis not a positive swab. Hugs back

[shocked80]

How do you get the swabs

[whitedaisies]

I ordered mine from westover heights. You call and book a consult appointment with nurse Terri warren. She then advises you and will send u swabs if you like. I just sent in my swabs. Haven't got results back yet. No one has swabbed me internally so that's the only place I think I could et a positive swab.

[WCSDancer2010]

Westover heights info:

 

http://westoverheights.com/ (503) 226-6678

 

@girlnamedhope

 

Glad you have been referred - definitely sounds like you have something out of balance with your immune system ... or that you have something else going on. Please keep us updated.

 

In the meantime, have you tried the Epsom Salts baths? going commando? Any of the other self help suggestions in the links below?

 

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/

 

Links to some of the items suggested in the links

http://tinyurl.com/pmosahc Link to Alum

http://tinyurl.com/Aloecream

http://tinyurl.com/bactine

http://tinyurl.com/Oragelsgldose

http://tinyurl.com/DMSO4HSV

 

[OutOfWit]

Yes tried the baths. Blowing off with hair dryer, going commando....lysine. Went off birth control. Alkaline diet- no caffeine, no chocolate no alcohol.

[OutOfWit]

Yay. At least got my ID appointment for April 8th. I wish they would run some IV Acyclovir on me and see if that knocks this virus out for a while.

[WCSDancer2010]

I hope that they can do something for you ... in the meantime, you may want to contact Westover Heights and do a phone consult - they may have some other ideas about what may be going on ... at $5/minute I think it's well worth the investment to try to get some answers/ideas ...

 

http://westoverheights.com/ (503) 226-6678

[Sil88]

My doctor thinks it's systemic because I had a breakout on the my thighs... Which spread to the calf and ankle area.

 

I'm not gonna get too excited yet - but yesterday I had some little yellow blisters on my ankle, and today they've merged into one... it looks awfully familiar. I'm gonna save my thoughts until I can identify it a bit better.

 

 

[WCSDancer2010]

Generally if you auto-innoculate yourself its in the first few weeks .. but if you want to be sure, get them swabbed ...

 

Any chance you walked through Poison Ivy???

[Sil88]

Nope, this is the first time I've seen anything on my ankle and it happened on exactly the same day as my first 'standard' OB in about 6 months. It looks very suspect too. I read a few other cases on google where the virus takes a different nerve path leading to the ankle. Oh well, I might try to get it swabbed but I'd probably get laughed out of the place :P

[WCSDancer2010]

Look - I had Lyme symptoms once, but it was in my finger ... the Dr didn't want to test but I handed him my insurance card and my arm and said "Humor me" ... turns out I was right and I had just recently been bitten... one dose of antibiotics and I was fine...

 

But be careful of what you "read" on Google ... if it's not backed by solid science there's a good chance the person was recently infected and autoinnoculated themselves. @Herrytheherp can tell you all about autoinnoculating his ankles :)