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› Forums › Herpes Questions › Limbo

  • This topic has 18 replies, 2 voices, and was last updated 1 month, 3 weeks ago by Terri Warren.
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    • July 12, 2021 at 5:47 am #74190
      Sad
      Spectator

      Hello
      I have been single most of my adult life. I had a horrid sexual encounter in 2017 with male i met through internet. He was very controlling and pushy and I ended up having sex when I didn’t want to.
      I was in pain down below and had a sore throat a few days after. I panicked that I had herpes and confronted him. He didnt seem to care. I had a small hard limb on inner labia. All tests and swab came beck negative.
      On and off I have had odd symptoms
      A few large boils in my undercarriage, vaginal and anal pain, a couple of small hard lumps on inner labia, itching and sharp, shooting nerve pain in vagina and vulva area. Tingling buttocks and legs.
      I have fibromyalgia, Sjögren’s syndrome and pernicious anemia.
      I have not had any type of sexual encounter since as too scared and feel disgusting and suicidal at times.
      I had two lots of bloods done through company called “let’s get checked”
      First results last year (3 years after encounter )
      Igg hsv2 0.1 and hsv1 0.5
      Second lot done earlier this year
      Igg hsv2 0.1 and hsv1 1.05 which they call equivocal as under 1.1
      I cannot understand the big jump and I am now so low and panicky.

      I am on list for sexual counselling, on anti depressants

      Whhat reason is there for this increased result and does it therefore mean I have it

      I have asp had itchy crawling sensations on nerve endings on face on and off around my nose and mouth.

      I do have an old whiplash injury on one shoulder and a lower back injury from a fall some years ago

      Any help or advice gratefully receives. I have no idea how to go about getting western blot done. Would this be advisable.

    • July 12, 2021 at 6:07 am #74191
      Sad
      Spectator

      Sorry just double checked my figures
      March 2020 (three years after sexual contact )
      Hsv 1 0.232
      Hsv 2 0.500

      March 2021 (four years after sexual contact)
      Hsv 1 1.05
      Hsv 2 0.500

      Would the Covid vaccine impact on this years results ?

    • July 15, 2021 at 5:43 am #74221
      Terri Warren
      Keymaster

      The IgG test for HSV 1 is not great – it misses 30% of infections so it’s difficult to know what your equivocal value actually means. If you want a clearer answer, the western blot could provide that. About half the US population has HSV 1 infection so it is very common indeed. If you are really positive, we cannot know if your infection is oral or genital if you’ve never had a cold sore around the mouth or nose.

      Terri

    • July 16, 2021 at 11:12 am #74262
      Sad
      Spectator

      Thanks Terri

      How accurate is the wb at detecting hsv1?
      And how do I access this. I asked by gp but she said they did not spin bloods and I really have no idea where to start.
      I have contacted virology in Washington and been offered chance for 15 min consult
      Is this this where I could start things?

    • July 22, 2021 at 12:28 pm #74285
      Terri Warren
      Keymaster

      The western blot detects 95-96% of HSV 1 infection and >99% of HSV 2 infections.
      I wasn’t aware that UW offered this consultation service, but I would assume that that would be a good place to start, yes, if they can order the western blot for you. I called both virology research and client services and neither know what that’s about but clearly, someone told you about this so I assume it would be helpful?

      Terri

      • This reply was modified 1 year ago by Terri Warren.
    • August 11, 2021 at 2:12 pm #74504
      Sad
      Spectator

      Hi Terri

      I am currently unwell mentally due to increasing stress that I had hsv 1. Symptoms seem to be recurring about snout every four to six weeks and now looking back it seems impossible that it is anything else. The fact that my dating life which has been so so limited anyway is now over in my mid forties is proving so difficult to come to terms with. I have ordered another blood test from another uk company and waiting on results.

      Is there even a slight chance that my symptoms are not hsv?
      I’m getting pins and needles in buttocks and both legs prior to soreness inside my vagina and inflamed lady parts. Simultaneously I get itchy crawling sensations around my nose and mouth. I just had a small sore area on my lower lip 🤦‍♀️☹️☹️☹️☹️☹️☹️☹️☹️☹️☹️

    • August 16, 2021 at 3:33 pm #74568
      Terri Warren
      Keymaster

      I certainly think that is an excellent chance that your symptoms are not due to herpes, yes! And you’ve jumped to the conclusion, it sounds like, that you have this both orally and genitally, and I’m not sure why you think that exactly.
      If you live in the UK, I know a person in London who does the blood draws. And then the sample can be shipped to UW.

      Terri

    • September 8, 2021 at 2:41 pm #74788
      Sad
      Spectator

      Hi Terri

      I’m in an awful state. I got a blood test from another uk company and I have gone from negative herpes 2(last two blood tests ) and another equivocal herpes 1.

      How have the herpes 2 jumped so much after two previous negatives…
      Hsv 1 this time is 0.994 (equivocal)

      Hsv 2 this time 1.445 (positive)

      On top of work and life stress this has destroyed me. Do some people with these results have negatives from western blot???

    • September 9, 2021 at 1:09 am #74815
      Sad
      Spectator

      Sorry Terri. My last post is muddled I’m in such a state.
      What I meant is how have I gone from two negative hsv2 tests to a positive
      I have not had any type of sexual contact since 2017 due to intimacy issues and terrified of giving this to someone.

      March 2020 (three years after sexual contact )
      Hsv 1 0.232
      Hsv 2 0.500
      Company-let’s get checked

      March 2021 (four years after sexual contact)
      Hsv 1 1.05
      Hsv 2 0.500
      Company-let’s get checked

      September 2021
      Hsv 1 0.994(equivocal)
      Hsv 2 1.45 (positive)

      Symptoms as described previously. I currently have an itchy, crawly feeling around my nostrils and left side of my lips.

      I have 200 pound currently. Is that enough to get the ball rolling western blot wise.
      I want a result that I can trust so if the opportunity for love or a relationship does arise I can at least explore that.

      If western blot confirms I’m positive for either I will close down any chance of that. I would simply not be able to.

      Warm regards
      Kelly

    • September 13, 2021 at 7:30 am #74844
      Terri Warren
      Keymaster

      This is difficult because while you can ship your blood to the University of Washington and get a western blot, it is more than 200 pounds. The shipping alone is very expensive. But you can certainly check on what it would cost to ship a small package weighing less than one pound to the US from where you are. I have a person in London that can draw your blood.
      I think the positive is very likely a false positive (85%) but we can’t be sure.
      If you have a credit card, you could put the visit with me and the test on your credit card and pay t off gradually as well as the shipping. Let me know.

      Terri

    • September 14, 2021 at 8:50 am #74889
      Sad
      Spectator

      Ok, cost is a problem but my mental health is more important so I have managed to lend some money from my mum. Could you give me estimate of cost all-together. I haven’t got a credit card as have bad credit due to debt accumulated whilst I was at university. I am on a debt management plan and pay them 200 pound a month.

      Also, is there anywhere closer to me than London For getting bloods done as getting there would also be very expensive. I live in South Wales in a small town. Nearest big town is Cardiff.

      I wish there were not so many hurdles to overcome.

      Do I need to pay more money for these questions ?

    • September 14, 2021 at 10:58 am #74890
      Sad
      Spectator

      Also, I’m thinking that as I have an equivocal for herpes 1 and a positive for herpes 2 (current results) does that indicate that I will be positive for one or the other on the western blot or could I be negative for both.

      I know I never had hsv 1 prior to sexual encounter in 2017 and weird symptoms have been both oral and genital in nature. Should I just accept that I have one or the other and that I have been invested both orally and genitally ?xx

    • September 27, 2021 at 1:22 pm #74960
      Terri Warren
      Keymaster

      You could be negative for both.
      I don’t know of somewhere closer than London for you to be drawn, but you can be drawn with one serum separator tube anywhere that will draw it and spin it. the shipping to the US is going to be very expensive, just so you know.

      Terri

    • September 28, 2021 at 2:11 am #75013
      Sad
      Spectator

      Thanku
      1)Just trying to work out what to do as don’t have credit card, could I use debit card?

      2) have you had any experience of people with symptoms like mine and low positives that turned out to be ok? I have been reading forums etc and my symptoms match up so feel pretty frightened that I have it at this point.

      3) do you think 500 pound would be enough money to complete test?

    • October 3, 2021 at 10:27 am #75055
      Terri Warren
      Keymaster

      1)Just trying to work out what to do as don’t have credit card, could I use debit card?
      I think that would work

      2) have you had any experience of people with symptoms like mine and low positives that turned out to be ok? I have been reading forums etc and my symptoms match up so feel pretty frightened that I have it at this point.
      Yes, most certainly I have had those people!

      3) do you think 500 pound would be enough money to complete test?
      I don’t know about the cost of the shipping. The test itself and consult with me is $325 US dollars, then you would need to add shipping and the cost of having your blood drawn

      Terri

    • March 7, 2022 at 8:06 am #76732
      Sad
      Spectator

      Hi Terri
      Since I last posted my mental health has deteriorated badly leaving me unable to think or function andcwanting to end my life. I am under mental health services. I have tried to do an econsult but it would not let me die to uk address.

      I have been having non stop symptoms for apx 8 months that rotate between oral and genital. I’m exhausted and losing my mind trying to protect myself from others.
      After coming out of covid to now know I cannot hug or kiss anyone ever again is to much to bear. We all need comfort and love in these times.
      Is there anything I can do to calm symptoms so I can at least think straight? I’ve spent so much money buying aciclovier online and although it calms symptoms they never stop and it’s destroying me.
      I have been taking up to 800 mg four or five times a day at times to have symptoms reduce then spring back again.

      I think my symptoms are undoubtably herpes. As follows.
      Prickly sensation in urethra, burning stinging around labia, pins and needles in buttocks and legs, pain in left leg and terrible nerve pain in left foot. Pain on left of inside of vagina.
      Once that calms oral cycle starts, itchy bumpy rash on back of neck, crawly creepy nerve sensations around both nostrils and tiny itchy bump either side, electric shock sensations all around my tongue, itchy crawly sensations around lip and small sore area that seems to appear on left inner lip then disappear as quickly. Random itchy fingers, few bumps pop up then go. Once these symptoms slow down genital ones start again.

      I’ve turned down two chances of a relationship as even kissing someone will put them at risk. Is this disseminated herpes due to having autoimmune conditions? My gp has put aciclovier on script and referee me for counselling. What do u advise can be done. As well as antivirals I take vitamin c etc ?

      Would you agree I should not kiss or hug anyone?

    • March 9, 2022 at 8:42 am #76761
      Terri Warren
      Keymaster

      I am not at all convinced that you have herpes! You’ve really jumped to some conclusions here that may or may not be at all accurate.
      Have you given up on trying to find a way to get the western blot? if you want to do a consult with me, just make up a US address and phone – you could use my old clinic address, 2330 NW Flanders, Portland, OR 97210 and the old phone, 503-226-6678.
      Re-checking your IgG results, I think it is very likely that you have a false positive on your IgG test. I would strongly suggest somehow getting the money together to do a consult, and ship blood to UW. You are making yourself miserable with all of this and I don’t believe you need to do that! Please – just take one step at a time and let’s get the blot done for you so you can start anew.

      Terri

    • June 12, 2022 at 5:11 am #77723
      Sad
      Spectator

      Hello..
      I think my one achievement here is your longest thread ever!
      I’m struggling mentally and now financially so chances of getting blot remote.
      Besides I’m confident I have hsv 2 orally and genitally. I now get horrid pain in left leg, stabbing pain in left foot, tingling over buttocks and thighs, awful nerve pain inside vagina(left side).
      I also get an itch rash up left side of back and burning around skin over left lower ribs.
      Nerve pain down left arm, small itch cuts on left fingers. Sharp pain over left of skull, itchy tingling around nose, electric shock sensations left of tongue.. small blister on tongue and small pus filled spots and itching left of face.
      I believe I contracted hsv2 orally due to autoimmune conditions making me more susceptible.
      Outbreaks basically constant. Some relief if I take 1600 mg aciclovier daily which I’m buying online which contributes to financial distress. I have given up asking gp for support. For the first time since that disgusting encounter I have met a man online I like. He wants to meet up but it seems I will have to remain single as I can’t even risk kissing anyone without fear of infecting them. Of course I will disclose but who would want to be with someone who constantly puts them at risk of this.
      Please any advice ? Can I kiss someone ? Does hsv2 transmit oral to oral easily ?

      These constant symptoms are since covid vaccine. Will this ever calm down ?

    • June 18, 2022 at 1:36 am #77755
      Terri Warren
      Keymaster

      If you had HSV 2, I think your numbers would be significantly higher. The risk of you having HSV 2 with a 1.45 is 85% that it is a false positive, but you are unlikely to convinced of the statistics, given the symptoms that you seem to be experiencing.

      If you have oral HSV 2, which is extremely unlikely, it is unlikely to be shed from the oral area.

      There is really no more that I can do for you as you are in quite a different place about this than I am.

      Terri

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