Aa
Really need help and answers
I was exposed to HSV2 back in November of 2011. We used condoms and I did not know this man had herpes, told me the next morning. I felt I did not have to worry, because we used the condoms. After a few days, I realized I did not want to be in a relationship with this man. One month later, I had what appeared to be an outbreak in my vaginal area. Scared, I did not see a Dr. The sores lasted just a few days but spread to my anal crack area. Within a few days, I started burning in my vaginal area, itching, breaking out in my mouth with what appeared to be cancer sores/blood blisters, itching all over, pins and needles feeling all over, and tingling all over. I was freaking out. I had the IGg HSV1 and 2 testing done as well as IGM, this was 10 weeks post exposure. All tests came back negative, but not only negative, extremely low levels. All of the symptoms I mentioned remained, except breaking out inside of mouth. I asked to do a retest and my Dr.s actually laughed at me and told me I do not have HSV, but allowed me to do the retest. This was 15 weeks post initial contact. Again, negative on all, and even lower levels. The pain at this point was unbearable. Missing lots of work, major burning, now in hands and down legs, feet, sensitivity to fabric, topical products. Every time I sit it is the worse. Compression makes my vaginal and anal area burn and the back of thighs. It is so bad I start crying. I decided to pay the $200 and get a Western Blot done, because this was really messing up my life and I had to know once and for all. This was done 17 weeks post exposure. Test came back negative. I now felt I could breathe and try to find out what the hell it is that is eating me up alive. I have had all sorts of blood tests done, Lyme disease, all the run of the mill tests, and all come back negative. The only two that showed anything was a slight elevation of my immunoglobulin IG E was 397.7 where it should be below 100 and my Epstein Barr came back positive, but the Dr said this showed it was an old exposure (but Epstein Barr is herpes related, no?) There were two EBV tests. First one is the IgG value it is 4.91 positive. The second is EBV EgM with a .07 negative. According to the Dr. the first test shows old exposure, the second a newer exposure. But, this Dr. has been wrong with diagnosing of other tests (too long to go into) Another test he did is PTT-LA Antcardiolipin IgG which says it is high with a 18, but I have no idea what this test is. So nothing is changing, I am in major pain, especially when I sit and this has become systemic. It is now affecting my hearing, major tinnitus and my hearing will go in and out. I decided to do a test again, 31 weeks post exposure. Again, all negative and all very low levels. When I say low I mean .10 for HSV2 and .08 for HSV1 (both the IGg tests) and the IGM is .36. So, if there is a Dr out there reading this, I NEED HELP! Do I redo a Western Blot again, I am told this is the golden standard and I am really surprised to read that herpesforsure (who posted here in the past) had this done and it came back negative, not just once, but twice, and after 3 years it was a swab that showed him positive for herpes, but no blood test did. I find that so hard to believe, but why would he say this if it wasn't true. What on earth do I have? Could I have been exposed to a toxin, but why breakout in my vaginal area at first? I have severe, severe burning all through out my body, tingling, pins and needles, even sharp stabbing pains. The breakouts in my mouth are gone, but I itch all over and break out in bumps all over my body. The tingling feeling is even up in my face and down into my toes. I have had break outs on my fingers and palms of my hands when this started and I still have some of the sores. These were identified as warts. Aren't warts associated with a virus? I have had to change my PCP 4 times now, because they are stumped and do not know what else to do, but I am sure there is more testing I need to have done. Oh, one very important part, I did have a biopsy done recently to see if I have nerve damage and this came back positive, I have SFN, small fiber neropathy. I have read on HCsupport web site that several people have the same feelings I am experiencing,tests come back negative and we are left in a sea of confusion. One poster said that a research study found that in rabbits if there was an EBV present and/or you had chicken pox as a child that possibly HSV testing would not show up. Sorry, I may have this wrong, but it was something to this affect. Since my EBV is positive, could my HSV not be showing up? Could this possibly be actually a new exposure to EBV and could this be why I am having these symptoms? I did have chicken pox as a child,also. Believe me, I do not want to have HSV, but I am sooo confused and just want to know what I have. Please any help from anyone would be appreciated.
igm herpes testing isn't accurate to begin with. differences in clear negatives is absolutely meaningless.
Hi Grace,
Last year I saw two Drs. who told me they do not trust the blood tests at all and I have to have a swab done for confirmation. I just had another blood test done and I am wondering, why would my IGM go up, especially after such a long period from having any sexual contact. My IGM went from .36 and .37 to .53. I know this is still below positive, but can you help me in understanding why it would jump so much?
I was not able to see my GYN, but saw her nurse practitioner, who could not answer this question. She did a swab of my vaginal area, and looked at it under a scope, came back and said I have a bacterial infection. I have been on a vaginal cream since last Thursday, today is Tuesday, so 5 days, and there is no difference at all. When this all first started I was put on a double dose of oral yeast infection medication with no results and then last summer I did a vaginal cream for yeast infection, with no results. If you could please look into what possibilities would cause my IGM to go up and get back to me, I would appreciate it.
Thank you
Last year I saw two Drs. who told me they do not trust the blood tests at all and I have to have a swab done for confirmation. I just had another blood test done and I am wondering, why would my IGM go up, especially after such a long period from having any sexual contact. My IGM went from .36 and .37 to .53. I know this is still below positive, but can you help me in understanding why it would jump so much?
I was not able to see my GYN, but saw her nurse practitioner, who could not answer this question. She did a swab of my vaginal area, and looked at it under a scope, came back and said I have a bacterial infection. I have been on a vaginal cream since last Thursday, today is Tuesday, so 5 days, and there is no difference at all. When this all first started I was put on a double dose of oral yeast infection medication with no results and then last summer I did a vaginal cream for yeast infection, with no results. If you could please look into what possibilities would cause my IGM to go up and get back to me, I would appreciate it.
Thank you
way past time to put the idea of herpes causing all of this to bed. herpes doesn't cause these sorts of symptoms for this long and you've consistently tested negative too. Don't allow yourself to fall into the trap that some gloom and doomers create on other websites that encourage you to believe that everything is due to herpes and you can't trust testing.
would a skin biopsy for other causes be a good idea at this point? yes it would be. are you following up with a gyn regularly? do they test you for yeast and bacterial infections vaginally when you are seen?
would a skin biopsy for other causes be a good idea at this point? yes it would be. are you following up with a gyn regularly? do they test you for yeast and bacterial infections vaginally when you are seen?
Hi Grace,
My symptoms, post close to 18 months, have not gotten any better, actually much worse. Out of frustration I went to HC support web site and found a few others who are very confused about testing and results.
A few posters said they have been told to abstain from any antivirals at least 4 months before doing any HSV testing. I had my first IGg HSV test done around 10 weeks post sexual encounter( I know he is HSV2 positive.) My results were <.2 for both HSV1 and 2. I then went on Valtrex at 3 months post sexual encounter and did my second HSV IGg test while I was still on the Valtrex, close to the end of the prescription. It came back with low values HSV1 .13 HSV2 .08. I did my WB a few weeks after finishing the pills, and it came back negative. My symptoms never let up, they seemed to a little while I was on the anitvirals, but it could have been a placebo affect, I don't know. I redid an IGg HSV test in late June, approx a little over 3 months post taking any antivirals. My results were HSV1 .07 and HSV2 .13.
I am in dire pain. It is so bad, I have had to go on TDI from my job. All Drs are stumped and two have said I can not trust blood test results and I have to have a sore cultured. I have not had any sores to culture, but I did have two noticeable papercut openings on both sides of my labia a few months back. I never thought about getting a culture on these, as blood was coming from them, not a clear liqued. I did another IGg test in January of this year, this would be 14 months post sexual encoutner. It too came back negative, but no value was assigned, just negative.
With all this info my questions are: Is it true that the antivirals I took interfered with my 2nd IGg and my WB test?
If I get another papercut opening, can this be swabbed for HSV, even though it is blood, not a clear fluid? Also, if you get bumps which do not have a clear liqued or appear to have any fluid, how can you get a culture from these? Can you get a punch biopsy? I would appreciat an answer to all of the questions when you can.
Much appreciation...
My symptoms, post close to 18 months, have not gotten any better, actually much worse. Out of frustration I went to HC support web site and found a few others who are very confused about testing and results.
A few posters said they have been told to abstain from any antivirals at least 4 months before doing any HSV testing. I had my first IGg HSV test done around 10 weeks post sexual encounter( I know he is HSV2 positive.) My results were <.2 for both HSV1 and 2. I then went on Valtrex at 3 months post sexual encounter and did my second HSV IGg test while I was still on the Valtrex, close to the end of the prescription. It came back with low values HSV1 .13 HSV2 .08. I did my WB a few weeks after finishing the pills, and it came back negative. My symptoms never let up, they seemed to a little while I was on the anitvirals, but it could have been a placebo affect, I don't know. I redid an IGg HSV test in late June, approx a little over 3 months post taking any antivirals. My results were HSV1 .07 and HSV2 .13.
I am in dire pain. It is so bad, I have had to go on TDI from my job. All Drs are stumped and two have said I can not trust blood test results and I have to have a sore cultured. I have not had any sores to culture, but I did have two noticeable papercut openings on both sides of my labia a few months back. I never thought about getting a culture on these, as blood was coming from them, not a clear liqued. I did another IGg test in January of this year, this would be 14 months post sexual encoutner. It too came back negative, but no value was assigned, just negative.
With all this info my questions are: Is it true that the antivirals I took interfered with my 2nd IGg and my WB test?
If I get another papercut opening, can this be swabbed for HSV, even though it is blood, not a clear fluid? Also, if you get bumps which do not have a clear liqued or appear to have any fluid, how can you get a culture from these? Can you get a punch biopsy? I would appreciat an answer to all of the questions when you can.
Much appreciation...
I don't read pm's - this is included in the read before posting post on the forum.
no reason for more herpes testing.
no reason for more herpes testing.
Sorry I meant to say.."said I could not rely on previous testing." I think I asked you this before, but have you ever heard of tinnitus being associated with herpes and also my left eye is giving me all sorts of problems. Tearing, feels like there is something in there, when there isn't, very sore and red looking. I feel like I am falling apart, when over a year ago I was the picture of perfect health.
Hi Grace, I sent you an email regarding what I am going to post, I am not sure which is the best way to reach you. Anyhow, four months after posting this, nothing has changed. Symptoms the same, had some more breakouts on my fingers, which when I google what happens, only herpes comes up as a culprit. I will all of a sudden get a tingling sensation on my finger, look down and there is either a papercut which mysteriously just appeared or a small sore, like a blister, which opens a little and stings. I never see any fluid to go and get a swab, and one appears, then I get three or four within hours and days. I saw a neurologist who says that this is HSV, that neuropathy is not in the vaginal, anal area. I told him I have had the blood tests done and he says this is inconclusive. Do I pay to have the Western Blot done again? I called the UofW virology lab and got two different answers. The first person I spoke to said that it can take up to a year for a person to serum convert and said I could rely on previous testing. I then called back and got a different department and the person I spoke to said nonsense, my tests were conclusive and felt it would be a waste of my money. What are your thoughts about serum conversion time table. It has now been over a year since my sexual encounter and I have had no other sexual contact with anyother man since this. I am just so confused, frustrated and in so much pain..D
many, many diseases, infections and syndromes out there that can cause us illness. don't get caught up on this being something std related - just not worth it .
Grace, thank you so much. I am going to accept your response and believe it is not HSV. I am seeing a new PCP next week and I will ask, just for peace of mind, to redo the HSV, this will be 10 month post exposure and then I can put this to rest. I have seen two or three other people on the HCsupport form web page who have similar stories of mine, and they too are confused and baffled. And yes, I have done all the other STD testing, all tests have been done twice and I have had HIV done three times. I know I am a very complicated case, I am so confused and in so much pain and agony. If anything comes to you, please let me know..I will keep you up to date as to other testing. This way, anyone else who may have read what I have and could possibly be dealing with the same or similar issues may see a test or two their Dr may have over looked. Again, thank you for volunteering your time and getting back to me..D
I also read your post on the phn board you made last month too. so sorry to hear you are going through all of this and I understand the frustration of no one being able to tell you what is going on, been there, done that. this is not a herpes issue. herpes would never cause all the issues you are having on all these body parts. you also covered your other std testing bases too it appears so as your provider has already pointed out, this isn't a std testing issue.
wish I could say this sounds like X but really nothing jumps to mind. All I can recommend is following up regularly with a neurologist and a dermatologist to try to get a better idea of what is going on.
best of luck!
grace
wish I could say this sounds like X but really nothing jumps to mind. All I can recommend is following up regularly with a neurologist and a dermatologist to try to get a better idea of what is going on.
best of luck!
grace
I also should add that an ANA test was done back in March and it was positve with a 40. My understanding is that this test is done with regards to autoimmune diseases, but no Dr. has followed up on this or bothers with this. I had this redone in June and it is still at 40 positive. My immunoglobulin IG E went up to 435, but from what I read on the internet this is related to allergies. Could allergies be my culprit. I posted this information on the allergy community, but no one bothered answering me. Please, any assistance would be really nice. I am rather stressed and in a lot of pain.
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You are reading content posted in the Herpes Community
Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
