herpes lesions all over body-really frightened

[oahu15]

Hi All, I am a 48 year old woman who has just found out she has HSV1 and HSV2. I have been married for almost 3 years and believe I contracted the HSV 1 cold sores from my current husband. never having had one, I didn't know really anything about them. The HSV2 I believe I got from my ex husband who serial cheated on me while we were married. I remember about a decade ago having painful urination but never in my wildest dreams would I have thought herpes. It just seemed like a minor thing so I let it go. I thought maybe a bladder infection, but it went away on it's own so I didn;t think about it again. I did not know at the time, however, that he was cheating with several women. I filed for divorce and had all the std tests and they came back negative. My ob/gyn said recently she did not test for herpes at that time as there is no cure. everything else was fine. In December of last year I got cold sores all over my lips, burning urination and red raised sores all over both of my shoulders. All at the same time. Being under a lot of stress, I put it out of my mind and they eventually went away but there is scarring on my shoulders-basically light purple patches that never go away. I had another recurrence of this same thing again in June, August and Now currently. They are spreading. all over my back now and my sides. I am wondering if my immune system is compromised although my OBGYN did a blood test when she did the other HSV1 and HSV2 tests in August, and the white blood cell count was normal. I am freaking out. My lips have sores all over, not just one sore, I have lesions in my vaginal area and all over my shoulders and sides  and upper legs. The ones on my legs are more raised red bumps but I also now have a cluster of blisters on my breast. I wonder if I am scratching my skin at night in my sleep as they itch terribly and spreading it to myself? I thought if you had a healthy immune system they just stayed in the vaginal area or on your lips. I am scared to death and embarrassed to go back to the doctor. I am wondering if I should go see an immunoligist or an infectious disease specialist. I don't want anyone looking at me at this time it's horrible to live with. Has anyone else ever experienced herpes traveling all over the body with or without a compromised immune system? I am in a real state of panic and don't know who to see. My dermatologist looked at the skin in August after it had healed on my body and did a biopsy which of course was too late. she is older (in 60's) and basically just said they are not dangeruos. Big help. I was given Valtrex from my obgyn last time for 1 gram 2 times a day for the next outbreak, but I was freaked out about using meds. When this started again on Sunday I cracked the pill and have taken 500mg for now he 5th day and the cluster on my breast is new and I see no improvement. I thought Valtrex stopped the virus from spreading. someone qualified, if you have any advice experience or info, please help. I am devastated. Lastly, I have cold sores all over my tongue and thrush. I haven;t eaten in 48 hours and can barely brush my teeth due to the pain. Please help.

[ConfusedHsv2014]

I am very sorry to read that you are experiencing these symptoms. However, my best advice to you would be to seek professional  consultation, as the opinions here are just that Opinions and/or personal experience. Everyone symptoms will and do not present the same. So, the answer to your questions is YES to seeing Infectious Disease A.S.A.P. Anyone without medical knowledge about this disease can say your symptoms do not sound like typical symptoms, but for confirmation and a piece of mind please seek professional advice regarding your advanced manifestation.

I wish you the very best.

Its unfortunate, but this is the gift that keeps on giving.

I've also recently learned that just because you already the disease "Does Not" Make you Immune to getting in another place on your body. It actually make you more susceptible. That for which I am living proof.

[gracefromHHP]

This doesn't sound like it's a herpes issue.  There are too many dermatones involved at the same time as well as your symptoms don't sound herpetic. I think finding out that you have hsv1 and hsv2 is just a coincidence and not the cause of your symptoms in the past year.  Since you've tested + for hsv1, as most adults will, best to confirm your hsv2 results to see if you need additional testing to confirm your hsv2 status too. There are false positive issues with the blood testing that you will need to rule out.

You should be following up on all of this with a good dermatologist at this point, not your gyn. this is more extensive than what a gyn is trained to deal with. many, many things can cause these sorts of all over body issues. You need to find out what is going on in order to treat it properly.  If it's not a herpes issue, valtrex isn't going to help.

Daily suppressive therapy with valtrex is safe for long term use. It's also very safe to take to treat recurrences.There is no reason to avoid using it for cold sores or genital herpes recurrences. Once you've figured out what is causing all your symptoms you have, it's ok to use valtrex as needed for future recurrences of herpes symptoms, should you ever have them. hope that makes sense.

[Life360_Dave]

The only time a person can contract the same hsv in the genital and oral area is getting them at the same time. To have an established hsv1 oral would make a person basicly immune to getting it genital.
So what you need to do is have the sores swabbed to confirm what they are. Maybe an allergic reation like hives. Just thinking these are herpes is not going to help you, you need to know what they are.

[oahu15]

does anyone know where to look for a good support group?

[oahu15]

Thank you for your response. I wrote this quickly as I am under tremendous stress over this. While everyone says it seems almost impossible for HSV1 or HSV2 to travel to other parts of the body, here I am.

I called my OBGYN today and my white blood cell count was a 5.1-well within normal range according to the nurse. So if I don't have a compromised immune system, (which is the only time I have read herpes can travel all over the body) how could I be getting these painful blisters? I was wondering if anyone else has experienced HSV1 and HSV2 outbreaks simultaneously. That seems very unusual but I have sores on my mouth and everywhere else which would indicate HSV1 and 2. at the same time. Also on my tongue. I cannot eat or drink. a Z pack won;t help a virus, so I have no recourse but time?

I signed onto this forum hoping to find information, common ground and support. I figured if someone here has experienced all over sores, I would not feel like such a pariah. This is scaring me like nothing I have ever known. All I read about is total dependence on Valtrex, but Valtrex doesn;t seem like it is a good idea for longterm use.

I have had 4 outbreaks in 10 months, all the same with blisters all over my shoulders and vaginal area and mouth. Now the blisters are spreading and getting larger.

[Life360_Dave]

Hi, its very difficult to read this with no broken paragraphs. So not sure what your asking. If your asking is your oral hsv1 breaking out all over your upper body as you describe the answer would be highly unlikely. Recurrent outbreaks all most always occurs in the same spot give or take an inch as prefers the path of least resistance.

The way to get to the bottom of what these sores are is to have a PCR swab test but it must be done within 48 hours after appearing. Since this is reoccuring, i would higly suggest have this done so we know what your really dealing with .