TreeHugger44

Thank you for your honest post. I am worried about something similar with my 10 year old. Zero chance of abuse or something weird. People say it can’t be spread non sexually but HSV1 can through drinks, chap stick, etc, so I don’t know. did you get any test results?

In the past month alone I have gotten an out break from having blood drawn (woke up the next day with a tingling elbow and 2 lesions on that arm) and starting on an SSRI anti depressant (worst OB in years), I also get outbreaks from working out too hard, too much alcohol, caffeine, too much sun. Has anyone found an antidepressant that doesn’t increase their outbreaks? I was reading online that SSRIs can decrease immunity. All these outbreaks are making me depressed!!

I know this thread is older but did either of you ever get any answers or relief? I am dealing with the same symptoms for 3 years plus bumps that seem exactly like HSV but all negative tests. Very frequent. I am a nurse so I know it’s not all in my head or just normal stuff. Thanks for this thread, it was good to know I am not alone

I don’t know for sure if I have HSV but I am 99% sure I have it despite negative blood tests. I have tested for everything else, including thyroid, celiac, B12 deficiency, autoimmune diseases like lupus. Sometimes I wake up with pins and needles in one arm or leg when I am NOT in a bent up position (like I know it happens when you sleep on your stomach with your arms above your head). This will happen several nights in the same extremity and then aching dull joint pain in my knee or hip or elbow, then an outbreak on my butt on the same side of the body. It’s freaky. Obviously those could individually be 100 different things but the pattern and cyclic nature of it makes me think it’s related to these red bumps/blisters.

It definitely shouldn’t be herpes that often but the “prodrome” type nighttime itching and tingling (not just at night but it’s worse then) before the rash appears, plus the fact that they are fluid filled, doesn’t point to much else. It’s not celiac rash. Nothing ulcerative, it’s in my mouth and throat but not other mucous membranes. But on my thighs, butt, bikini area, one on my face today. Oh and my scalp. I can feel them in my hair so badly before the bumps. It feels like someone pulling my hair. https://www.nhs.uk/conditions/chickenpox/ Looks like the first picture on here but I already had chickenpox as a kid and shingles doesn’t recur often. anyway, thanks for listening big and letting me vent. I would give anything to stop this non stop cycle. I see now why people fall for these quack cures.

Hi everyone. I have had what I THINK is Herpes for 3 years now. I have had 4 negative IgG tests over that time but no one will PCR test swab a damn lesion. 3 different times at 3 different doctors and they all say “no it looks like folliculitis” and swab for bacteria, which is negative. Same in my throat once- no, wasn’t strep. Anyway, this OB is particularly bad. Itchy for 2 nights and couldn’t sleep well. Does this LOOK like Herpes? I basically get some form of this every 10 days after a day or 2 of tingling/itching but not usually this bad. Also, I am not a troll, I am actually a nurse. I understand that it doesn’t make sense That my HSV IgG is negative and I could still think I have it but trust me when I say me and a zillion specialist have ruled out many things. I just want answers and to be normal. Please help! I am miserable. [Images automatically removed]

Hi guys. I am at my wits end. I have had constant symptoms and outbreaks for 2.5 years now. I was convinced I had genital herpes and then also oral but I am now on my 4th negative IgG test. This last one was after 3 plus months of no antivirals. I itch frequently, especially at night, on my face and nostrils and butt and now newly my shins. Then I get red bumps on my face and butt. Repeat at least weekly. Frequent sore throat and sometimes sores in mouth or cuts like lines from nothing. Not actual cold sores. I have seen an allergist and immunologist which didn’t turn up much. Had to see an eye specialist for new eye pain and redness. All other labs like thyroid, inflammatory/rheumatoid markers normal. Celiac negative. Today I received my latest negative HSV lab results and boom, 2 lesions on my butt. Any ideas for what it could be if not herpes? It’s 100 percent not a pimple, it is fluid filled. What else could it be? I keep trying to get it swabbed but no luck so far, urgent care keeps treating me for folliculitis (for 2 years...okay...). Any chance it’s still HSV? Appreciate all your advice. (also I am an RN and basically never went to the doctor for anything before this started. It’s not in my head and it’s not an exaggeration of symptoms).

Hi Exhausted Girl, did you ever figure out what was causing the symptoms? Or did they get better? I also keep testing negative but acyclovir seems to help somewhat and I think I have given this to someone else now. So frustrating as I only started seeing them since I kept testing negative. I had been 2 years for me now.

Okay you're definitely negative for Herpes then, right?? Any idea of what it actually is then? Anything help? Trying to figure out what I have too, very similar. I will say a very high quality probiotic has helped me

What is this protein? Does it trip the testing in to a false negative or false positive?

Have you had a positive IgG or swab? I also feel like it has spread to my eyes but luckily no actual vision part of the eye involvement. Also have similar facial bumps. No pimples, stingy. But of course doctors don't believe us.

Stunnedbythis, have you tested positive for HSV and have similar? Or also test negative? I am happy to report that I have less frequent bumps on my butt now but everything else is still awful, especially the facial/nostril/butt/vagina itching. It's every single day. Which also seems like not herpes, isn't it supposed to be cyclical? Can you have outbreaks if you never DON"T have an outbreak?

Thanks! My symptoms started with a frequent and constantcycle of itchy genitals/butt followed by bumps on my butt which are burny/stingy, red with tiny fluid filled centers. But many individual bumps, not clusters. Frequent sore throats at the same time with occasional ulcers in back of throat or on gums, but they are small and not always there. Very very itchy nostrils and face and eyelashes. Tingling lips and irritated corners of mouth, irritated/tingling genitals. Sometimes feeling like my chin is being stabbed with thumbtacks, then ends in tiny bumps appearing with a tiny fluid filled center. Clearly not a coincidence that it's the face and butt at same time but no one can explain that. Working up everything and was just negative for....everything. Thyroid, lupus, lyme, celiac, IgA deficiency, varicella (I am immune but show no current infection based on IgM), STD's, all negative. I am scared to do WB for it to say HSV 1 and I still won't have an answer. But why do I have no IgG to HSV1 now if I clearly used to have regular full on cold sores?

BlurneWorder, I don't think your symptoms are from stress or in your head as I have almost the EXACT same thing. For 2 years. HSV IgG 1 and 2 negative, and pretty low of a negative at 2 years (0.23 and 0.19). When you say you once tested positive for HSV1, was that an IgM test? I also get itchy bumps in groin/on buttocks, which doctors always call folliculitis. But it comes with a terrible itchy prodrome and always comes back. And never pus filled, always fluid, but no "typical" HSV looking. Last time was negative for bacterial culture. I also have constantly tingling/chapped lips, irritated and red corners of mouth, sore throat, itchy face, itchy butt check, small ulcerations in mouth occasionally, itchy butt, weird itchy zits (but not zits, tiny but clear fluid not pus), itchy eyelashes, dry eyes. Occasional brain fog, once at work I couldn't remember the name a doctor I had worked with for years. Also like you mine is more constant than cyclical. Always one thing or the other although the itchy actual bumps downtown have finally become less constant. So...many people here with negative HSV tests and similar symptoms. Has anyone had a lesion swabbed for HSV PCR or Varicella? Has anyone had the blood PCR test for "disemminated" HSV? Does Acyclovir or Valtrex help anyone? I feel like it helps a little but once they had me try the protocol for active shingles of 1000mg Valtrex 3x a day and it did not help clear up my butt. Took it for 6 months with no relief, then switched to acyclovir which maybe helped? What are the odds that lots of people can be negative for HSV IgG but have tons of symptoms? What are the odds all of them are also Acyclovir resistant? Or maybe this just IS the symptoms of one particular resistant strain? What else can it be? Help I am desperate! But wanted to let you know you're not alone. Also I am so tired of itching all night.

Hi, I have been struggling to get properly diagnosed for 2 years now. It's a long story but I have nearly constant symptoms both oral and downtown. Anyway, 3 times I have had a negative IgG test for HSV 1 and 2. 2 were just "negative, <0.9" and one test showed my levels of 0.23 and 0.19. All of these tests were over 1 year after symptoms started. But the point of this post is this...if someone else had HSV1/coldsores for sure as a child, but had been symptom free for a long time, and now no IgG to it, would your Western Blot be positive anyway? I am interested in doing the Western Blot but not sure how much info it would give me if it could just be from cold sores as a kid. On the same vein, when people say "well if your IgG is negative you don't have HSV," I am confused because I for sure had cold sores as an adolescent and I thought that would make my IgG postive now for HSV 1 anyway. So I am not sure how accurate the test is for me. Also, if your IgG test is negative, does it mean you aren't making any antibodies or just that the test is falsely not detecting them? Thanks for your input. And yes, I DO wish I could just accept I don't have HSV and move on but my symptoms are a huge struggle daily and no one has been able to attribute them to anything else. Definitely been tested for lots of stuff and also antivirals do seem to help the severity although not frequency. So I do feel like a crazy person and it's AWFUL. I used to take zero meds and never go to doctors!!

Original poster here- just had Igg levels checked again and they were 0.23 for HSV 1 and 0.11 for HSV 2. To me this proves I do in fact have Herpes as I for sure had cold sores as a younger adult and this isn’t even showing that so therefore is clearly wrong. Anyway, just super frustrated as I was up all night itching and woke up with a sore inside my mouth (new spot for me! Good times). I really do think some people have something wrong with their immune system. What can I do?? In response to the above I have been checked for strep (above and below), I do sleep plenty, I have been avoiding nuts and excessive chocolate, switched from coffee to tea but drink an occasional cup. I take Vit C, Vit D, B vitamins, and now switched From Valtrex daily to Acyclovir twice a day, 400mg. Basically my body cannot fight it. The funny thing is I am otherwise healthy and don’t get sick often even though I work with sick children.

Hi everyone. 35 year old Female and I have GHSV as diagnosed by my doctor even though all my IgG tests are always negative. We are both convinced it is herpes as is another doctor but my lesions don’t have a lot of fluid to swab and I am scared to go off antivirals at this time to test accurately. Anyway, I kept thinking it would get better and it doesn’t. I am having an outbreak so painful now I want to scream. I have been taking Valtrex 1gm daily for 5 months with zero relief and sometimes I take 2 1gm pills a day during an OB. I do think it has helped decrease the severity of outbreaks (bumps are smaller and less blister like but still lots of then all over my bump and sometimes thighs or public hair line) but not frequency. Anyway, is it normal to have outbreaks basically every week?? Like I had one early August which I thought was finishing up only to get worse Aug 12. That cleared up and led to another one Aug 24, and now Sept 6 I having a horrendous one. What do I do?? Try switching to a different med? Is my herpes resistant?? I am a single mom so how will I ever date again?? It feels like disclosure is a non issue when you don’t even have 2 symptom free and or bump free days to have intimacy. That would scare someone off for sure. To top things off I get tons of itching and burning in my nostrils and chin too and a sore throat to boot. Like I can’t live like this, it’s intolerable. Anyway just looking for suggestions and support, thank you so much!!

I have been having what I thought was herpes for over a year. But instead of having outbreaks, I mostly just have symptoms all the time. It's a constant carousel of nose/eyelid itching with down there itching (different areas), pimple like sores on my butt (single fluid filled pimple type things on red base, but a few each butt cheek). Mostly they don't crust or ulcerate. Sometimes they go away quickly, other times not. No sores on my face but I have also had many sore throats this year- every time without cold symptoms or fever and every time the same pattern of dryness then soreness. I finally went to my dr to get tested and just admit I have it. And my IgG HSV 1 and 2 were both negative <0.9. Which is weird because I definitely used to have cold sores on my lips. She prescribed me Valtrex 500mg daily even though reassuring me I didn't have it- said it could be some other thing in that family like shingles. Made no sense but I wanted relief. It seemed to help but now it just seems to make it worse. The last few days I itch so much that I took 1000mg twice a day. I want to think it isn't helping because I don't really have herpes but that also makes no sense. I clearly have something and I am so miserable. In over a year I have had maybe 30 days total symptoms free. What do I do???