Jump to content

tiredandlonely

Members
  • Content Count

    94
  • Joined

  • Last visited

  • Days Won

    10

tiredandlonely last won the day on July 20

tiredandlonely had the most liked content!

Community Reputation

32 Excellent

Recent Profile Visitors

234 profile views
  1. I'm very sorry for what you have gone through. I have suffered from anxiety and depression for over a decade, following several traumatic events that occurred in my life. I have spent a lot of time unhappy and angry, too.. It is okay to ask for help and it is okay to commiserate and look for empathy. It is okay to feel sad and angry. I'm trying to encourage you to fight for your own happiness, though. It is *terrible* that you had to suffer from abuse and that you experience PTSD. But these things can make you stronger, and the fact that you are on here, looking for help, means that you are resilient and want to get better. I think you can. You just need to pull yourself back from getting lost in the weeds. I know this because I have spent YEARS of my lie lost in the weeds 🙂 It seems to me like you are fixating on whether or not you have HSV-2 and you are struggling to cope. I don't think it has as much to do with the science and the statistics about the accuracy of tests, but with a general anxiety around the things that have happened to you and accepting things as they are in your life. I don't know if you have tried therapy, and I also know that if/when someone decides to try therapy, you need to find the right person to work with. I've been in and out of therapy for many years, and I have had therapists who helped me and therapists I couldn't get away from fast enough. But if you have the endurance to find someone you connect with, it can be so helpful to unload your worries, get perspective, and work on yourself in a safe, compassionate way. Don't be angry at yourself for not doing "better." But if you want to feel better and .be happier, try to focus on the positive things. Try to find ways to deal with anxiety (honestly, I did A LOT - diet, exercise, socialization, cognitive behavioral therapy, etc. but also had to eventually go on a very low dose of an SSRI, and combined with the other changes, it made such a difference in my ability to cope). What works for me might not work for you. But I get so frustrated and passionate about fighting for yourself because I was unhappy for so long. I want you to know that there is a better way and that you can have a life that brings you joy, even if you also have to experience pain.
  2. Antivirals can interfere with seroconverting (you can read about this at the Westover Heights website if you are interested), especially if you had started them immediately after experiencing symptoms, because they can suppress the virus so much that your body doesn't have a chance to mount an immune response. But you mention that you haven't been on them the whole time, and in that case, your body should have had a chance to mount an immune response. Can you clarify if by "not the whole time" you mean you took like a week or 2 off from them, or if there were a few months in there when you were not on them? There are other things that can cause small ulcers, but only HSV-2 would cause a positive swab. Do you know if your swab was done by viral culture or PCR? Pretty much all reliable sources I have seen state that a positive viral culture is definitive for diagnosis purposes. Yes, a degree of human error exists, but when we talk about the margin of error on a lab test like IgG, it's not human error that we're considering - it's the error rate that is inherent to the test. Depending on the manufacturer of the test that was used for you, IgG misses 8% of HSV-2 cases. Viral cultures are not 100% accurate. They can often be falsely negative - especially if you wait several days to have a sore swabbed. But I can't even find a "false positive" rate published for these tests - they're not looking for a specific antibody - they are looking for the actual virus. If the test detects the virus, it is there. When you say there is a degree of human error, what you are saying is that you are hoping that the lab made an error. This is possible - human error is always possible - but I suspect it would be unlikely (though again, not impossible). I know this is not what you want to hear. There are other things that can cause small ulcers. Genital herpes would be the most likely cause, but they could have been caused by other STIs or bacterial or yeast infections. Did you start taking antivirals when you developed the ulcer(s)? And if so, did they go away shortly after taking them? Just because the person who you think exposed you has never had sores does not mean he does not have HSV-2 (as I'm sure you know, 80% of people with HSV-2 don't experience symptoms). Also, I am curious if he had a regular STD panel (which does not include herpes) and his doctor just told him that he was negative for everything, or if he actually had an HSV blood test. Do you know? If I were in your position, I would stop taking the antivirals for 3 months and then I would redo the IgG test. If the IgG test was still negative, I'd do the Western Blot. If the WB was negative, I would believe that result (negative results on the WB are over 99% accurate) as long as I didn't experience any herpes-like symptoms (itching, tingling, burning, ulcers, sores, etc). If you stop antivirals and develop symptoms, then you can have the symptoms re-evaluated for herpes or some other infection, and you can always go back on antivirals, so the risk with this approach is fairly low.
  3. From the abstract: Compared with the UW WB as the criterion standard, EIA was 70.2% sensitive and 91.6% specific for HSV-1, and 91.9% sensitive and 57.4% specific for HSV-2. Sensitivity = the ability of the test to truly identify those with the disease. Specificity = the ability of the test to truly identify those without the disease. The key point here is the 91.9% sensitivity of the test - that is where the quoted 92% "accuracy" comes from. The low specificity in this case essentially means that there could be a higher chance of a false positive test result (which isn't applicable to you because your results have been negative). The website you linked to says "a recent study corroborates this finding...100% of the labs using gG-based tests accurately reported that the blood sample was negative for HSV-2." But there is no reference anywhere on that site to the actual study. I have a problem with this because it gives no information about the study and there are a lot of factors I would want to consider before accepting the results. For instance: How many blood samples were tested in that study (a low number reduces statistical confidence in the results)? When was the study performed? What was the reference used to confirm positive/negative samples? Was it peer reviewed? Who paid for the study (a potential indicator of bias)? I found one 510k filing (what a company files with the FDA for clearance of a medical device) where they used Western Blot as a comparison: https://www.accessdata.fda.gov/cdrh_docs/reviews/K033106.pdf If you look at page 7 where they summarize their clinical studies, you will see that the "% negative agreement negative to WB" is 92.07%. This means that the IgG test missed 8% of the HSV-2 positive samples. In any case, I said in my first post that I thought you could choose to believe the negative IgG results and no one would fault you for this. I reiterated this sentiment in my last post. You seem to want to convince me that you don't have HSV-2 based on things you've read online, but I'm not telling you that you have HSV-2. I'm telling you what I would do, personally, in your situation. I think if you advocate for yourself and find a doctor you can trust and who will listen to you/take you seriously, that you should be able to get the WB ordered if that is what you want. I know you don't want to be referred to Terri Warren, but wanted to mention that through her website, you can actually pay her to order the test for you. Then you wouldn't have to find a local doctor to order it for you. I am only mentioning this because it's a resource that would require less searching and less mental effort on your part. I do think it is possible to find a doctor locally, but like I said - you will need to advocate for yourself. Lastly, you are only stuck in this situation if you want to be. You can choose one of the following: - Believe the negative IgG results and move on with your life - Get the WB, believe the result of that test, and move on with your life We don't get to choose the awful shit that happens to us. But awful shit does happen to everyone. Everyone on this forum has at least one permanent STD. We are all learning to cope. You can let this bury you, or you can embrace the good things in your life, learn to love yourself, and demand more. STDs do not make you damaged or unworthy of love. I am in the best relationship of my life, and I met my husband after I was diagnosed with HSV-2. You can stay angry, and your feelings will always be valid, but what is the anger doing for you? It's not hurting the doctors who let you down or the ex who betrayed you; it's only hurting you.
  4. Do you know what the swab was positive for? HSV-1 or HSV-2? It is rare to get a false positive with a swab unless there is some sort of lab mix up. After your positive swab, did you take antivirals? If so, how long did you take them for/are you still taking them? Antivirals can interfere with seroconversion (but if you have been off them for at least 12 weeks, your test should be accurate). Have you had any symptoms since the symptoms you had swabbed? Do you know for sure if the person who you believe exposed you had HSV? If so, which type? The IgG for HSV-1 misses up to 30% of infections, so if your swab was positive for HSV-1, an IgG may miss this. As I'm sure you know, the most reliable blood test for herpes is the Western Blot, so if you really want to confirm your status (especially if it's HSV-1), this may be the best way to go.
  5. You seem incredibly angry and distrustful, and I don't blame you. You have clearly been through a lot and have suffered deeply. It seems like you've been carrying this around for along time, and I don't think it is serving you. It seems like you have decided to confront these issues and deal with them now, so I hope that whatever you choose to do/believe/feel helps you to find some peace. You state that you have conflicting information about whether or not you have HSV-2. I'm sure you already know that the Western Blot is a superior diagnostic test than the IgG. This means that a positive WB beats a negative IgG and a negative WB beats a positive IgG. It is more comprehensive assay. You have had 3 negative IgG tests. Unless you were only recently exposed, I don't see a point in retesting endlessly. The test looks for a protein (antibody) that is made by the immune system. If your immune system doesn't make enough of it, it won't be detected by the test. That's where the 8% "failure rate" comes from. Most people who have a negative IgG can accept that they don't have HSV-2, unless there are complicating factors. In your situation, the complicating factors appear to be that you did have symptoms and that you did (possibly) have a positive WB. It sounds like your doctor handled this situation poorly and I don't want to invalidate what you've gone through or speculate about what could have happened to your results. I think these are your options: You can choose to believe that the WB was never run. In the absence of ongoing symptoms, you can believe your IgG test results and move forward with your life. You can take the WB now and put any doubts about your status to rest You can contact UW directly and see if they still have your results on file. I'm not sure how things are handled, but because they do a lot of research in herpes testing, they may still have this data. I don't know of any doctors in Chicago because I am not from there. I do know that Chicago is a big city and you should be able to find a doctor who is willing to work with you on getting this test. However, if they're not used to ordering it, simply calling around and asking about this is probably not going to be the best strategy. Most doctors offices won't be readily equipped to collect a sample for this test. They need certain tubes and instructions for processing. You can contact UW directly and have them send you a kit that will provide everything that is needed. You can also ask for guidance on what to ask doctors' offices when you call around to find someone who will order the test. The facility you go to will need a lab that can spin down the blood - this (and the doctor's willingness to work with you) is really important. Links/Resources for you: Contact info for UW: https://depts.washington.edu/uwviro/order/ The publication that discusses IgG vs. Western Blot is here: https://www.ncbi.nlm.nih.gov/pubmed/28876290 Information on Western Blot accuracy is here: http://depts.washington.edu/uwviro/herpes-serologies/ (click on "Herpes Simplex Types 1 and 2 by Western Blot")
  6. The Western Blot looks for all antibodies/proteins associated with HSV-2, not just IgG. The IgG test can miss HSV-2 if your IgG levels are low, but since a Western Blot checks everything, it's less likely to miss an infection. Western Blot is over 99% accurate for HSV-2. IgG is about 92% accurate. 17 years is a long time and it is possible that the results were filed incorrectly/not stored properly; especially with the switch to electronic medical records over that time period. Likely all records were scanned in, and they might have missed this. I would be really skeptical that the test wasn't performed at all because you paid for it and your doctor reported a result to you. IgG misses about 8% of HSV-2 cases. It's possible that your body just doesn't produce enough IgG antibodies to be detectable on the test. If you're in this 8% of people who don't test positive on IgG, it wouldn't matter how many tests you have; your body isn't producing those antibodies so they won't be detected. I'm really sorry you're in this situation because it must be so frustrating and confusing. I think you have a choice to make: you can believe the negative IgG test, which is 92% accurate, or you can repeat the Western Blot through a more reliable healthcare provider. If I were in your position, I'd probably just go ahead and get the Western Blot again because I would want to know. I think it's a waste of time to continue with the IgG testing. If the WB is negative, you can move forward knowing you don't have HSV-2 and that your doctor 17 years ago made a mistake. However, you can also believe the negative IgG test, with 92% certainty. I don't think anyone would fault you for this.
  7. Definitely don't lower your standards. No, not everyone is going to be okay with HSV, but a lot of people will. I agree with 100918; I raised my standards and was more selective after I got HSV-2. I didn't want to be vulnerable with just anyone. Before I had HSV-2, I was really guarded in relationships (this is because of a really bad experience with breaking off an engagement when I was younger). I had a lot of 6 month-ish relationships that ended because we never really became close and our time just kind of ran out. I didn't want to be vulnerable and I didn't share myself with those guys because I was terrified they would hurt me. After I got HSV-2 and realized I had to disclose to people, I spent a lot of time looking inward to remind myself of why I was so valuable and worth loving. it was terrifying to me to open up and share that I had HSV-2, but when I did and was accepted, I felt connected to the guys and accepted in a way I never had before. It was really uplifting and it helped me to share more of myself in general. It did result in more heartbreak for me because when you create a stronger connection and stronger bond, it hurts more when the relationship ends. But through this process, I found my husband. He is HSV-2 negative and we do everything sex-wise that I did before HSV-2. I'm honestly not sure if I would have found my husband (who is the best man I know) and connected with him the way I did if I didn't have HSV-2.
  8. It's not that HSV is so rare that it is misunderstood. It is that it is very common and most people don't have symptoms so it's not considered a major health issue. Many doctors depend on outdated information, and not all of them fully understand the implications of the IgG testing. You may want to do a little bit of research/call around and see if you can find a doctor who has experience with herpes. This isn't totally accurate; the immune system is more complicated, and it creates a lot of different antibodies to HSV-2. The IgG test looks for one specific type of antibody and most people who have HSV-2 will have a lot of this antibody circulating in their system. It is possible that you have HSV-2 and that the other antibodies to HSV-2 (the ones that would be detected on a WB) are keeping the virus in check. Everyone's immune system is different, so yours might just be more efficient at making other antibodies. You also may not have HSV-2, and something else may be cross-reacting with the IgG test causing a slightly-higher-than-negative value. I don't think that you got a rarer strain. I think that if you have herpes, your body is dealing with it in a unique way, so your symptoms are not textbook. I also think it's possible that you got something that is not herpes. Honestly, if you have herpes, your symptoms sound mild even without antivirals. I would encourage you to give them a shot and see if they can help. When the symptoms are under control, it can really help with the mental acceptance piece. But also, it's important to determine if this is herpes or not. Because if it's not herpes, you need to figure out what it is so that it can be addressed and treated. There are lots of things that can cause itching/irritation in the genital area. Have you tried antibiotics or antifungals (metronidazole is a good one - it is a prescription in the US). After I got herpes, everything was out of whack down there, and because the pH was off and there was inflammation, I ended up getting a pretty bad bacterial infection. I spent months thinking it was herpes, but it wasn't. I'm a woman, so obviously my parts are different, but it's possible that something happened in your experience that caused things to be off balance down there, and resulted in inflammation. I think it is possible to get this under control and to reduce/eliminate your symptoms. You just need to find a doctor who can work with you to figure out what's going on down there. Sometimes it takes trying a couple of medications to see what does the trick. As far as I know, the WB test is only available through the University of Washington. You can contact them directly to have them send you a kit. You will need to find a healthcare provider who can order the test and process/spin the blood properly and then ship it to UW. I know that they have done tests for people in Europe before, so it is possible, but it may be a little extra work. For the record, I have no affiliation with UW, and I really don't think the WB is necessary for most people because the HSV-2 IgG is a pretty strong test (I have a positive IgG and it correlated with my symptoms, so I never got a WB myself). But you are in a more unusual situation since you've had several equivocal tests. If you find out that your IgG index values were positive and above 3.5, then you can be pretty certain your positive and move forward with trying antivirals if you want to (I'd encourage it because it really improved my quality of life, but I know they're not for everyone). But I'm skeptical that your positive index values were above 3.5 given your testing history. I really hope you get to the bottom of this because I know how frustrating it is to not have answers. FWIW if this is herpes, it is really, really not the end of the world. I have had it for over 5 years and I haven't had an outbreak or any symptoms since I started antivirals. It impacted my sex life in the beginning, but it doesn't anymore. It's a total non-issue. So, basically what I'm trying to say is that no matter what this is, it's going to be okay.
  9. So you have had no "positive" test where they provided you with an actual IgG value? Given that it has been over a year and you have never taken antivirals, I would consider the Western Blot. It's more expensive, but in your situation I think it will give you much needed information. If you are unwilling to do that, I would at least encourage you to do another IgG at a place where they will give you the index value. If your positive value has been below 3.5, which I would suspect is the case, since you've had equivocal results on several tests, then it would need to be confirmed with Western Blot anyway. IgG would be expected to increase over a period of months after initial infection, but once you reach the positive range, it shouldn't go back down to the equivocal range. It's possible you are positive and your body just doesn't have as much IgG antibodies HSV-2 as other types (which is why the Western Blot is more accurate; it looks for all proteins/antibodies to HSV-2 and not just IgG), but it's also possible that you don't have HSV-2. If you've ever had mono or chicken pox, those antibodies could potentially cross react with the IgG test, resulting in an equivocal or low positive score. Also, HSV-1 being negative doesn't mean as much as you might think. The IgG for HSV-1 misses up to 30% of infections (the IgG for HSV-2 is more sensitive). Also, if you do have HSV-2, regarding antivirals, it's worth trying them to see if you even do have side effects. If you have side effects, then you can always stop. These drugs are generally very well tolerated and have been around for decades. If you are having sex and you and your partner are concerned about potential transmission, then it doesn't matter if your symptoms are bearable or not; you would want them so that viral shedding and the risk of transmission is reduced.
  10. What were your index values for the IgG positive tests? Have you considered a Western Blot? Why don't you want to try antivirals? If you are experiencing symptoms that you believe are associated with herpes, it may be worth trying antivirals to see if they help with your symptoms. If they don't, it may be worth considering alternative diagnoses (which is not to say you don't have herpes - it's just that even when you have herpes, not everything is caused by herpes). Were you with your girlfriend at the time that you believe you were exposed to herpes? Has she been tested? As I'm sure you already know, it is possible to have safe sex and significantly reduce your chances of transmitting the virus to her.
  11. I understand how it would seem liked you had to have caught this from oral sex because of where your OB occurred, but outbreaks don't occur only on the skin that was exposed at the time you contracted the virus. The virus enters the skin (in your case, perhaps at the base of the shaft where maybe the condom wasn't covering), incubates, infects your nerves, and then you have an outbreak. It can occur anywhere in your genital area. The skin on your glans is thinner than other skin in your genital area, and is more vulnerable to outbreaks. Also, tiny bumps with no pain and no itch don't sound like typical herpes. Was your outbreak swabbed? Have you had recurrences? I highly doubt that the "sores" you experienced on your arm and leg (unless it was the upper thigh) were herpes. Did you have them checked out? Lastly, there is no way to know if you are shedding all the time. How long have you had the virus? Do you take antivirals?
  12. Condoms just aren't 100% effective at preventing herpes transmission because it's transmitted through skin to skin contact and the condom only covers your penis. Condoms do a better job preventing pregnancy and STDs that are transmitted through bodily fluids/membranes. You don't necessarily get an outbreak exactly where the virus entered your skin. It lives in the nerves, so it can show up anywhere the word enervates. So, just because your penis was covered, if another part of your genital area came into contact with the virus, then you would still have gotten it. It doesn't mean you didn't use the condom properly; condoms just aren't all that effective at preventing herpes transmission, especially if this woman had a new infection or didn't know she had it and wasn't taking proper precautions. She may have had a mild outbreak that she didn't know was herpes, or may have been shedding asymptomatically. I'm not really sure what you are trying to convey by describing your symptoms as fairly mild (although it's great that your symptoms are mild). Do you mean that you think you got it from oral sex because your symptoms are not severe? In case it was unclear, my statement that oral HSV-2 is less severe really only applies to the experience of the person with the oral infection. It's generally less severe because it doesn't reactivate as frequently in that site (although the primary outbreak may be unpleasant). You have the virus genitally, so if your symptoms are not severe, it has nothing to do with whether the person who gave it to you had it genitally or orally; it just has to do with how your immune system is handling it.
  13. While it is possible for someone to have HSV-2 orally, it is very uncommon, and the virus reactivates in the oral cavity very, very rarely. Honestly, if someone is willing to take the risk of getting genital HSV-2 from sexual intercourse, I don't understand why oral sex would be off the table. Their risk of contracting oral HSV-2 is much lower, and the potential consequences (in my opinion) are less severe (genital HSV-2 can recur frequently; it is unlikely to occur frequently - if ever - if you catch it orally). I got HSV-2 from someone whom I only ever had sex with using condoms. Condoms do not prevent HSV-2 transmission 100% - I think it's a lot more common that you contracted this from sexual intercourse unless you know for certain that the woman who performed oral sex on you was infected with HSV-2 orally. Oral HSV-2 is extremely rare. It accounts for approximately 1% of oral infections and it sheds 1% of the time (https://herpeslife.com/opportunity/free-ebook-signup.html). Genital HSV-2 sheds 15-30% of the the time and condoms reduce the transmission rate by only 30-50%. There is also evidence that they are less effective at preventing transmission from women to men (than vice versa). https://www.guttmacher.org/journals/ipsrh/2001/12/condoms-reduce-womens-risk-herpes-infection-do-not-protect-men https://www.healio.com/infectious-disease/stds/news/in-the-journals/{31ed8b2f-7ebc-493d-861f-94056e5a294f}/risk-for-hsv-2-transmission-using-condoms-associated-with-gender It's not impossible, but statistically it's really unlikely.
  14. Swab is one of the most reliable ways to get a positive diagnosis. False negatives on a swab are not uncommon; especially if lesions are more than a few days old. However, false positives are very rare, and barring a lab mix up, you can be confident in the results. The numbers you have seen others post on this forum are index values on the IgG test, which is a blood test that looks for a specific type of antibody to HSV-2. There are different ranges on this test, and if your result falls in a certain range, your result may be inaccurate, and confirmatory testing with Western Blot is recommended. But most people in such situations do not have a positive swab to confirm their diagnosis. I'm really sorry that you are in this situation and your recent ex-boyfriend/partner sounds like a jerk. It's possible that he had it and did not know, and is now afraid to get tested, but his behavior is somewhat suspicious to me and he does not seem trustworthy. It is possible that you got this from your ex-husband, or a partner before your ex-husband, but the behavior of your recent partner makes me think he may have been hiding something from you. I am very sorry that you are dealing with this, and know this must be confusing and traumatic time for you. I promise you that it gets better, and that you will have a fulfilling love/sex life, even with this condition. This forum is a great resource, so I hope you'll stay connected.
×
×
  • Create New...