Jump to content
World's Largest Herpes Support Group
Sign in to follow this  

Herpes Symtoms but Always Testing Negative?

Recommended Posts


In doing some research I came across something very interesting. It may be useful to those who are experiencing typical herpes symptoms, but, testing negative over and over again. I am not implying this is what you have; but certainly something worth considering. And btw, as usual, after 2 minutes of reading it, I've already diagnosed myself with it.:oops:


An autoimmune disease called Behcet's Syndrome's initial symptoms closely resemble the herpes virus, causing vaginal sores, cuts, fissures, folliculitis and or inflammation in the genital area. Other symptoms develop many years later. I believe that many of you have this illness at varied degrees. It is different in everyone who has it. Your body is basically allergicly reacting to things around you. Your immune system is in over drive, it is an autoimmune disorder caused by enviromental damage to your immune system. It can not be fixed. It could get better or worse, depending on how well you take care of yourselves and how well you are treated.

. My symptoms started at age fifteen with itching, inflammation, then folliculitis (ingrown hairs), then cuts all over from time to time. It is different for everyone who has it. Some people just have inflammation where others may get cuts, or sores aswell. Folliculitis is a type of acne and is very common in Behcet's and occurs during or before a "flare" and can be on the face or anywhere. Chronic yeast infections and BV come hand and hand with Behcet's because it is a immune system disorder that weakens the immune system because the immune system is working in over drive. You are now allergic to more things. It is not contagious and it doesn't run in families. Researchers around the world think it is triggered by strep throat or from other enviromental causes, which permanitally damaged the immune system. It has been proven to not be genetic. Gential (genital) to Gential (genital) contact will cause a reaction "flare" in these people, so will a common illness, injury, or stress. It is very important for people who have this to rest often, use condoms, and take good care of themselves to avoid flares. They will also need medication like steriods and or immune suppressants, depending on their case. Someone who needs a lot of medication to start, might not need that much with a little time. Common symptoms later in the disease, if it goes untreated, are digestive symptoms, bowel inflammation, possible bladder inflammation that feels like a bladder infection, arthritis, fibromyalga (fibromyalgia), and very late in the disease serious eye inflammation and possibly central nervous system involvement. People rarely die from this illness, the main thing a person has to be worried about is quality of life. That why you want to be proactive, not scared. This disease can be managed if properly treated.

For about ten years I had the gential (genital) symptoms and was sure it was herpes and never mentioned it to my doctors again. None of the medication for herpes had ever helped me and I also noticed my husband never got sick from me. The inflammation was the worst and I was using hydrocortisone on my own by then for some relief.

I started having other symptoms like irritable bowel syndrome and fatigue. Then after I had two children my symptoms got a lot worse. FIbromyalga (fibromyalgia), Interstitial Cystitis, Epi-scleritis (inflammation of the small blood vessels in my eyes), and things like that. My immune system was attacking my body. It took years before I had enough symptoms and saw enough doctors to start getting it treated. They are still not totally sure what is wrong with me. There is a lot of misconceptions about these things because they are thought to be rare. The truth is that they are just highly under treated in the United States. They think I have something called Behcet's Syndrome, the world's oldest known disease. It is an autoimmune disease that can be very mild or more severe. It is hard to tell what it is unless you are able to get enough of the symptoms well documented and you have just the right symptoms even though your symptoms might be totally different than everyone else's symptoms. The stress in your life plays a big role in how bad your flares will be.

There are no tests that can tell if you have Behcet's. It is based on symptoms only. Vaginal symptoms that look like herpes (herpes causes inflammation, cuts, or sores), canker sores in the mouth at least three times per year, and inflammation in the blood vessels in the eyes. It can take years for enough of the symptoms to show up and they usually don't show up at the same time. You really need to fight for answers. Go to the American Behcet's Association for more information, but remember when you are there, those are the worst cases, most people with Behcet's don't have it that severe and do well with treatment.

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  


Try a Lysine supplement for cold sores

  • The Hive is Thriving!

    • Total Topics
    • Total Posts
  • Posts

    • Mrspinkk
      Hi everyone  I have Ghsv1. 3 months I receive frequent outbreaks. There are no lesion redness, burning and itching as just a rash. I know that herpes trigger opportunistic infections. How do I know this mushroom or that herpes ?  Do you have frequent outbreaks is living Ghsv1? I feel alone
    • LeftCoast
      I have been positive for about 8 months and I’ve generally been open to friends and family about my status. I’ve tried a brief stint with dating other H+ folks from Postive Singles and it hasn’t really worked out.  There’s this guy who works security at my gym and he’s been chatting me up a lot recently. I like him and I haven’t made any moves but I get the vibe he’s getting ready to ask me out. It sucks because he’s obviously interested and I would love to go out on a date with him.  I’ve never had to disclose to a new person before and I’m really really really dreading this. I’m dreading it to the point where Im wondering if I should turn him down if he does ask me. I hate this. You know I could handle the symptoms of herpes, the only thing that sucks about this thing is that it’s contagious. I have zero problem taking drugs everyday, but valtrex is so fucking inadequate with providing me any reassurance of reducing transmission.  I’m so frustrated. Just give me some better fucking drugs so I can feel confident again. 
    • valleynovascotia
      Any advice on on how i can change the way she thinks of her insecurities in the event I ever see her again or hang out with her or do you guys think that it's better too just walk away. The truth is though i never met another girl like her before and she was fine with me having herpes i could tell by the she reacted too it . How do you change the way someone views them self that has low self esteem. 
    • WilsoInAus
      Note @Asr624 that an IgM result does not confirm a herpes diagnosis. Was the rash swabbed as well?
    • LiveLife100
      Yes it's entirely possible that he didn't know and just now gave it to you. I've been with my husband almost 19 years and he was recently tested and is still negative. It's still possible of course that I could give it to him at any point. Sounds like you have a strong marriage and there is no reason this needs to be an issue other than a minor annoyance. I have 2 healthy children and have had no related medical issues due to HSV.

Important Information

We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue.