This is a long story but I really need help.
At 15 or 16, I started getting these vulval ulcers, basically every 2 months or so, without fail. However, I thought nothing of it even though they were painful and I couldn't pee, I had not had any sexual contact with anyone at all. So I thought it was nothing but I was scared.
At 18 I got ceramic braces. This is when all ***l broke loose. They would cut me and the wax did nothing to stop it. So I would have these ulcers in my mouth and they would spread and get bigger. I started to get them on my tongue, my gums, in my throat. I would go long periods not eating and I lost a lot of weight.
Then it started to spread out to my lips, making them crusty and blood and mucous.
One day I woke up and my vagina was basically on fire. It was the worst I had ever had and I had to go to the doctor. She looked at the ulcers and said "You have herpes. I'm going to send you for a blood test."
Short story, it came back positive (IgM). I was devastated and confused. She said it was a "recent infection".
I went back to see her about my mouth. She looked into my mouth and told me that was herpes too. And that I had re-infected myself. Which makes no sense! I'm supposed to believe that I got genital herpes from NOWHERE basically, THEN I re-infected myself!
Then she says I must have both types 1 and 2 and that she had said this before. Nevermind the fact that she had told me the infection was RECENT.
My orthodontist refused to let me wear the braces anymore. She told me that she sees herpes in the mouth all the time and that what I had was not it. She said she thought I had a deeper issue than that. And I believed her.
THe whole situation got worse though. I started having nose bleeds and crusty ulcers in my nose.
I had a culture done on a mouth sore as well as biopsies. None of them revealed anything significant. The culture was negative for herpes. That culture was done by one of the best dermatologists in the world. But I couldn't continue seeing him because of his location. He had suspected BEhcet's disease.
So I went to another dermatologist. She spent more time arguing with me than listening and kept telling me I had herpes. I had to FORCE her to do an IgG blood test. It came back NEGATIVE. That's when she started listening to me.
By this time, I was getting rashes on my chest that would break into ulcers. I had red painful spots under my feet that made it hard to walk or wear shoes. I had conjunctiva in my eyes, photophobia. I now wear transitions lenses.
For two years the genital ulcers stopped. ALL I was getting was red itchy, irritation near my vulva. Itching itching, itching and swollen.
I got rashes on my elbows. I had an ulcer near my eye on my eyelid twice. I had the fever, fatigue, the diarrhea, IBD, everything.
I have the bullae on my hands, and an itchy rash. Basically every symptom of erythema multiforme major.
When my derm saw the bullae she said, "yes you have EM, so that means you have herpes too."
I asked her why the test was negative, she said "sometimes the antibodies aren't detectable."
Okay, fine. I've read that that is possible. What I don't like is how she dismisses the fact that I had a culture done, by a dermatologist that could diagnose circles around her. And it was negative.
I don't deny that the diagnosis of EM.
My problem is that minus the IgM test, which has been WIDELY discredited, I have not been shown to have herpes at all. I don't see why I should be made to tell people I have something that I have no actual proof that I have, when there are at least a hundred other triggers of EM. How is that fair?
Why is it that I'm the rare person who never had sex of ANY TYPE and got GENITAL HERPES, Re-infected myself in one of the two directions. THEN developed EM major that affects all my mucous membranes. THEN I'm also one of the rare people who have herpes symptoms (seemingly), yet no detectable antibodies? REally?
It seems much more likely to me that I JUST have EM caused by something else. Why is that so hard to say to me?
Is it not likely that my ulcers are ALL from EM. Most of my symptoms have involved nearly all the mucous membranes. The rash was the last thing to show up.
I used to take advil/aleve and other NSAIDs every month without fail since I was nine because of my period.
Since I've come off of them, I haven't had the lip thing much. I am a slow acetylator. I had a rare reaction to Maxolon a few years back and had to be hospitalized.
Slow acetylators are prone to drug-related EM.
I'm not going to pretend that I don't have a problem with the herpes thing. I do. BUT it's MAINLY that I just don't see why the doctors I encounter except the ONE, seemed to WANT me to have something that no credible test has proven to be true and there are tons of other logical explanations.