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No diagnosis, no relief, no hope

Discussion in 'Herpes Symptoms' started by destroyed, Feb 29, 2012.

  1. destroyed

    destroyed Newbie

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    I'm new here, so not sure which section to post this in. Sorry to be so blunt. But I need some serious help. I'll try and keep my story as short as possible but there is a lot of it!
    About a year ago I had a very brief encounter with a man, I'm talking seconds before it was stopped, but it was skin to skin, bother genital and giving him oral. About 10 days later I got serious internal pain and a swelling feeling. Then lots of thin discharge and extreme vaginal itching. I started to feel unwell and knew straight away I had caught something. I knew 100% it was the start of my first herpes outbreak. I was petrified and couldn't believe I had caught it from that one off very brief encounter! I couldn't get to be seen for many many reasons, so I had to ride it out for 2 weeks while I got seriously worse, including an extremely swollen vagina, itching that literally drove me insane, discharge that was running out and wouldn't stop, cuts down both side of the vagina, serious burning and stinging when having a wee, feeling sick and couldn't eat, feverish, hot flushes and cold chills, in bed for 3 days, and more. Basically I was very very sick.
    When I finally could be seen, everything had gone except for a fleshy growth that remained inside the entrance to my vagina. I was concerned it was the start of warts. I was told it was definitely not warts and it was normal skin and that there were no signs at all of herpes so I was fine. I tried to explain what had happened and they said I did have a bit of yeast and slight bv present and probably had a urine infection at the time, but nothing to worry about. All std tests were negative but gave me antibiotics just in case. But about a couple of weeks later, I got sick again and had really bad burning on my bum that I needed to put cold things on to try and stop it and then itchy spots came - it was unbearable. I got cuts again on the folds of the vagina with discharge and itching. The internal pain was unreal, I could hardly walk. I got a VERY VERY sore throat with a huge lymph node. I can't explain how ill I felt. I honestly thought about checking myself into the hospital cause I was convinced I was going to die!

    Long story short, I am convinced I got herpes genitally and orally, due to how ill I was and the fact that I get stinging cuts in my vagina and hot burning buttocks that then come up with very itching spots along with really sore lymph nodes in the groin etc etc etc. However, I got blood tested at 4 months and 1 year and have been negative for both type 1 and 2. Problem is, I've been told by doctors that I DO NOT have herpes because I didn't have blisters, and the fact that I get it back to back and it doesn't occur that often. I've been round in circles with this literally every single day for a year. I'm so tired. I took the blood test to prove to them that I do have it, so I can start the treatment. But it came back negative. I honestly believe the result is wrong. I never get fluid filled blisters on my vagina that can be burst and cultured so the odds of ever getting an accurate swab is near zero.

    Sorry, I know I'm waffling. My story is so long, so details will just come out as I chat with you guys, but basically, how do I go about actually getting a diagnosis if my blood is negative and I can't get a culture done. I have no access to pcr swabs. Would a biopsy on an itchy bum spot have any help? One doc has visually diagnosed me with herpes and erythema multiforme on my lips (which I thought was the herpes recurring all the time and taking ages to go away) but they want to get a definite diagnosis and typed before starting treatment.

    I have lots and lots more questions, but I suppose these will have to do for now. Does anyone else have back to back outbreaks? Do any of you get outbreaks on both sides (cause docs have told me it can ONLY ever appear on one side at a time!) Do you get outbreaks on your bum and vagina at the same time? Do you get outbreaks over a large area on your bum cheek rather than a small tight area? Has anyone else developed lots of polyps due to herpes? Does anyone else have erythema multiforme?

    Another major problem is that I am certain I have passed this on to a toddler, who came out with very painful tongue blisters with all the other systemic symptoms. Doctor said it could be herpes but didn't culture cause so many kids get it, it doesn't matter. But a few weeks apart, the toddler came out with painful blisters on both buttocks that burst and scabbed and had systemic symptoms again. I've been told it's impossible to pass this on to children without sexual abuse, but then I've read cases on the net where mothers are convinced their children have caught it. Does anyone have ANY experience with this. I find it hard to live with myself every single minute of every day, because of the pain I'm in, the stigma, the fact I've given it to an innocent child to deal with this crap for the rest of their lives...you get the picture of how much this is affecting me! I will appreciate ANY help at all, I am so depressed and fed up with people telling me constantly that I can't have herpes cause the blood was negative, when I know it can happen. And seriously - all the symptoms scream herpes.... Thanks. (desperately hoping someone will reply to this and start to help me figure this mess out......)
  2. JBnATL

    JBnATL Staff Member Super Moderator

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    if you had herpes your body would create antibodies to the virus and the blood tests would come back positive. So you don't have herpes. Sorry :(

    Blood tests are highly accurate and the fact that you had negative tests at 4 months and 1 year rule out a false negative result.

    And if this toddler does have herpes he did not get it from you. You can't get something from someone who does not have it. The doctors are right, it is quite common because of innocent kisses from relatives, but he did not get it from you.

    Keep going back to your doctors until you can get an accurate diagnosis. I have chatted with many people here who were POSITIVE they had herpes and later found out they did not. There are many other virus' and bacteria that can cause similar symptoms.

    Good luck!

    JB
  3. non stop guy

    non stop guy Active Member

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    Call the westover hieghts clinic.you can make a phone appt.5$ a minute.the gal that runs it is terri warren she's a hsv expert
  4. Jewel

    Jewel No longer a member

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    I'm sorry you are in so much pain and not getting any help. I felt I had back to back outbreaks during the first year and monthly. I had blisters that hurt like h*ll. I'm wondering could the doctor give you Valtrex and see if the symptoms clear up? IDK. Just an idea.

    Could it be something else that you caught? I feel your frustration as I've gone through much of the same. I've given up actually. I was told I had Rosacea on my face and the cream seems to work. Sorry for everything your going through.
  5. CDFPC

    CDFPC Active Member

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    Whatever it is that Destroyed has, it is not herpes.
  6. non stop guy

    non stop guy Active Member

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    You should be having pcr swabbing done when you have flair ups.they can pick up viral particals even without a sore.or a western blot blood test.there more sesitive than a normal igg bloodtest.nobody can tell u for sure u do or do not have hsv.if u go to medhelp there's a forum were u can pay 20$ and ask terri warren a question.u need to talk to an expert.she's that
  7. destroyed

    destroyed Newbie

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    THANK YOU SO MUCH to everyone for replying. I understand why you say I don't have herpes. The blood test was negative afterall, right! However, I have read SO MANY other people never testing positive in blood tests. There are quite a few on this site. Even after a positive culture years previous. I have been told by two dermatologists that I do have herpes, but as this was only on history and visual diagnosis, I want a swab to confirm type. I asked them both separately (and a gyn) about the blood test being negative, and all three (one who is very experienced in hsv) said the blood tests are not as accurate as once thought and the only way to be 100% sure is if you manage to get a positive culture. So although you think I'm a bit mad to think I've herpes when my blood was negative, trust me, if you were in my shoes you'd also be certain it is herpes. Just trust me on this - I am not exagerating or freaking out or hanging on to this for no reason! I have had classic timeline of symptoms etc and I wouldn't be going through all this if I wasn't sure. If I had have been just a bit concerned I got something, I'd surely just breath a sigh of relief when the first blood came back negative. But that's not the case. Thanks Jewel for your understanding. I truly truly appreciate it. I get a sense that you understand how I'm feeling and what I'm going through. They did put me on antivirals for a while and it did give me some relief, but I still got the odd outbreak however they were not as painful or as fully blown and healed a lot quicker. Within 4 days of coming off them, it all started again! I am so tired. It is hard enough, but with having symptoms quite often, it is really getting in the way of living now. The cervix pain and burning buttocks and itchy blisters are driving me insane! I think that all I can do, is just go on the tablets long term and accept I'll not find out the type of hsv (although I'm certain it's hsv2, and so are the doctors as I've never received oral sex) or keep trying to get swabs done and try to catch it. But in the meantime that's why I've come on here. To try and get some support from others in the same boat. Especially someone who's had a false negative test and understand the desperation! I have trawled the internet thoroughly looking for any other infections I could have caught and nothing else makes sense or fits the symptoms. But if anyone has any ideas, I'm prepared to listen. Some days I still hold onto the hope of 0.1% that it is some weird foreign std that we don't routinely test for here and that it isn't actually herpes, lol. Thanks again everyone. Means a lot at the minute. :(
  8. CDFPC

    CDFPC Active Member

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    She has already been blood tested a year after exposure and the test was negative. She doesn't have herpes.
  9. non stop guy

    non stop guy Active Member

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    As many as 5% don't convert.and never show it on blood test.maybe a westernblot would be better.but maybe not.
  10. non stop guy

    non stop guy Active Member

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    as many as 5% don't ever convert and show it on blood test.maybe a westernblot would be better I don't know.that's why she should get in contact with terri warren
  11. destroyed

    destroyed Newbie

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    I am absolutely certain I have herpes. and i have it badly. Very frequently and widespread and lots of nerve pain etc. I can't live like this. I've been told visually it definitely is herpes and that we just need to catch it in a swab. Does anybody know if a biopsy of a bump can confirm herpes? Cause my blisters are more like bug bites so there isn't a lot of fluid. After much research i don't believe the igg tests are as accurate as we think. afterall the igm was once the test of choice. i bet a new test will be invented and lots of us testing negative on the igg will in fact be showing positive.
  12. paranoidasalways

    paranoidasalways Member

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    hello destroyed,
    i will try my best to help you figure this out. but we might need some more info about everything going on.
    1. do you know the guy you slept with or can contact him to see if he knows his status?
    2. is he the only person that could have passed something on to you?
    3. the herpes test you took, where they igg?
    4. were you tested at a dr office or clinic?
    5. you said you were tested for everything, were those tests accurate and not false negatives?
    6. have you had the proper testing for hiv or aids?
    7. were any of the bumps biopsyed or cultured by your dermatologist or anyone else?

    my advice for now would be to contact the guy who you think transferred something to you. try to see if he will get tested for everything. have the doctor you're seeing try other tests relating to the symptoms, to see if it could be something non-std related.
    also, next time you go into the doctor's and there are no symptoms ask him/her if you do start experiencing the symptoms if you can come in at any time. i know it's hard to work something out like that with doctors, but it doesn't hurt to try. if that's not possible, next time you have the issues go to the e.r. and they might be able to help more and find more out opposed to simply a dr.'s office visit. sorry it's not as easy as it just be. keep trying though.
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