Desperately need some help !!!!!

Hello Sunflower, I see you have had no replies to date so I will try to give you some encouragement although I state with emphasis that I am a biologist but am not in the medical profession so my knowledge is limited to what I have read and what I have experienced in my 72 years on this planet.

I don't know how much background reading you have done so I may be telling you what you already know.  Many people who have had chickenpox as a child will have attacks of shingles, more so as they age.  My understanding is that the virus 'retreats' to the spinal cord where the immune system cannot get at it then remains dormant, usually for decades.  Then in comes down a nerve and appears as shingles.  A low immune system is one, but only one, of the causes listed (and I am not at all convinced it is a cause); I have a friend, in his 60s at the time and in very good health, who put his shingles attack down to a visit to the chiropractor.  The genital herpes virus, being a different strain of the same virus, does the same thing and you would not the first one to have it appear, as if a new infection, many years after being infected.  Some infected people never show any signs but can still infect partners.  If your husband has been your only partner, then you have contracted it from him, from an infection he got either before you were married or after - no matter what he says.  It is common, after the initial appearance of blisters (and this is the first time for you), for there to be flareups during the following months but mostly these taper off to the point where they don't occur at all.  On what grounds has it been decided that your immune system is 'shot' when the only really abnormal thing in your blood work is an ESR of 31?  Remembering that after each flare up the virus goes back up the nerve and lodges in nervous tissue, even if you do have a 'low' immune system it should not be causing it to travel back down the nerve and if you have an autoimmune disease, my understanding of autoimmune diseases is that your immune system is over rather than under active.  Also, and this may be news even to gynacologists, anti-viral drugs will stop the blistering but will not stop the virus travelling back down the nerve.  'Having relations' may affect the incidence of flareups in some people but that is most certainly not the only cause as flareups are not reinfections.  I have never heard of prednisolone (its name in my country) 'waking up' an infection, nor have I understood either prednisolone or plaquenil to be immune suppressants.  You are obviously very stressed and distressed about all of this, with good reason; stress itself is often cited as the cause of both a shingles outbreak and genital herpes flareups.  

I will add, but do not tell them I said this, that not all doctors know what they are talking about, particularly, but not exclusively, when it is things outside their area of expertise!  Do not accept everything they tell you at face value.

Now, after all of that, I want to say this to you: genital herpes is just an infection like any other infection except that it recurs now and then, at least initially. The incidence of it is huge.  Do not distress yourself about it because it is an STD; it is no big deal.  Try to think of it as a bit of an inconvenience that will pass, pretty much like a cold, expect an occasional flareup and think 'ho-hum, here we go again', and deal with your other health issues as if it wasn't there.

It has been nice talking with you Sunflower.  I hope I have helped.

Hi Sunflower:

There is another way you may have gotten your herpes: the birth canal. Herpes is one of the reasons there are more and more caesarians. If your parents didn't know they had it, or their obstetrician was unaware either of them having it or that it could be passed through vaginal delivery ,,, I'm not casting aspersions on your parents, just saying that there was plenty of ignorance to go round regarding herpes prior to 1982 in the States. I don't have herpes -- grace of God & sheer dumb luck because i was way too active from '69 - '80s. I do no t know if it's something that can be passed through breastfeeding. I only know about the birth canal aspect from friends who had to have caesarians.

I got shingles at 37, after 2 or 3 injections of high dose steroids into an SI joint. From what we're seeing now, perhaps the steroids all8w shingles to come out. Is it coincidence that no one in my huge family of brands from the 1860s-'70s, aunts & uncles from 1900-1916, and all my parents friends, neighbors, etc., ever got shingles, but nor were they being hit with steroids left, right and center. Nowadays we're all getting knee injections & steroid pills for every bad cough, and everyone gets shingles. All those relatives of mine had had chicken pox, and almost all of them lived at least to 80.

Don't beat yourself up about the herpes because nobody knows how far back this goes. It is indeed just another illness. YOU did nothing wrong.