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All the symptoms but no pos tests, convinced I have herpes, worried I passed it to my 6 year old


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I personally have OCD and it sounds like herpes has become an obsession for you. It seems pretty clear that you do not have herpes but you do not want to believe the negative tests. You should really see a rheumatologist and perhaps speak to a mental health professional about the herpes issue. I say this out of concern as I have dealt with similar issues.

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They they say skin on skin contactz that means rubbing. If you coukd just get it by a mere touch, everyone would have it all over. It doesn't work that way. Herpes on your finger happens when you have an open wound/hang nail and well doing things like thrusting your fingers (you get the picture) aka. Rubbing once again.

 

So why is nobody considering what you have, to be what your daughter has, since it's so contagious? Are your "obs" on both or one side of your body at a time?

 

@helpneeded kinda has a point. We do get people on herez who won't take a negative result as an answer. Usually you can tell by their posts, they're very anxious.

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But again every reputable source confirms that through skin to skin contact h can be spread, that's also why some people spread it to other body parts especially their fingers.

 

I agree with the others ... it's easy to convince yourself that you have something based on reading stuff (even the reputable stuff) on the internet. If this test comes back H- then you need to believe it....

 

As for the spreading to other body parts, that usually only happens in the first few weeks after you get Herpes before your body makes the specific antibodies to it. And as 2legit said, it's generally SUSTAINED SKIN TO SKIN CONTACT, usually rubbing unless you have an open, active lesion (in which case less sustained contact *could* result in transmission). Yes, people get it on their hands, but usually they already had something like skin cracks or hang nails which gives the virus an easy way in, and again, the person usually either gets it from someone else (ie, they didn't already have it) or they autoinoculate themselves within days or weeks of initially getting H. Children who get HSV1 oral sometimes autoinoculate themselves on either their hands or eyes because they have weaker immune systems to start with and they pick and poke at things and generally don't have great hand-washing hygiene.

 

Point being, it does sound like you all have something else going on between your daughters' diagnosis and your negative tests up to this point. If this one comes back H-, try to believe it. There ARE other things that cause lesions. If you are still not convinced, you should contact the people at Westover Heights Clinic. They can get you the Western Blot test which is the GOLD STANDARD of HSV testing. If that comes back negative then you really need to believe the result. But perhaps you should at least call them for a consult because they are the top experts in the country and perhaps they can help to clarify things for you :)

 

 

 

http://westoverheights.com/ (503) 226-6678 ... they can order the test for you through Quest Labs. It costs $5/minute for a consult … cheap IMO for clarity and/or peace of mind.

 

 

 

 

 

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Ur awesome thank you ... yeah so I'm certain about what's going on with my daughter. This igg test came back negative as well so that's two negative blood tests and 2 negative swabs. I may contact them .... I woke up with sores all over the inside of my mouth. So, we are going to look at autoimmune diseases.... behcets possibly. But il let u know if I order the western blot.

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I haven't been able to read this whole thread but it really does sound like you are obsessing over it, like another member stated, I also have OCD which is triggered by different things, so I know it's difficult, we can tell you a thousand times what we think is going on, you still will not believe it.

Good luck, just know you are not alone.

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I'm not obsessing over it. I'm seriously uncomfortable and bothered by the symptoms to say the least I don't think that's obsessing I have myself said that after 2 blood tests and swabs I am waiting for a referral to a dermatologist and possibly a rhumy. I came here to get advice thinking that it must be herpes, what better place to come to i figured right? But for me the search continues so that I can hopefully find a treatment that offers relief. Thanks.

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Take this from someone who is pretty much always active... I've touched myself down there plenty, even w hang nails, which I try to be cautious of and have not gotten herpes Whitlow in my fingers.

 

Also. I have autoimmune disease's and they can cause really strange thing's w your body. My best friend has kupus and Sjogrens. She has gotten cankera inside her mouth and I believe it was from Sjogrens. Do you have dry mouth or eye's by chance?

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No nothing dry I did have an episode of severe eye pain very dry and itchy for a few months no diagnosis then either ... ur very right autoimmune diseases cause weird stuff ... whatever it is I'll be fine with the diagnosis would just be nice to know so I can seek treatment. Right now the most bothersome is pain in my back buttocks, bumps and red spots that appear on my face and butt very itchy and feels like sunburn type skin with cold sensations, ulcers in my vagina have popped back up discharge and itchy genitals that's nothing new it's ongoing.... arghhhhhh!!!! That's me making the I'm going crazy sounds lol ... my doctors are baffled too lol

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I can ONLY imagine. It took a lot of persistence and almost a yr, to finally get diagnosed w autoimmune diseases. GYNO and GPs just blew me off, so I went to see a rheumatologist. Keep in mind, sometimes tests won't show in the blood you have it and can be diagnosed by symptoms alone. Autoimmune disease's that is, not H. My rheumatologist told me a third of her patients are diagnosed by symptoms, as tests can only help so much w diagnosis. My blood tests didn't indicate Sjogrens, but I had classic symptoms and Sjogrens, especially in beginning stages, can come in flares during stressful times. Some days were worse than others. Since starting a drug that works miracles on those w AI, especially MS and PD, I'm already after less than two weeks and lowest dose possible, starting to produce more saliva again and tears, so it's obvious despite my blood results, I had Sjogrens. Don't give up finding answers. I know all too well how draining it can be, but eventually you'll get some.

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You have been extremely helpful you have no idea! And I feel like I have been a burden but then again you are genuine bc u know how it feels! I will not give up I promise u that I'm pretty persistent. I did see that lupus ms behcets lichen sclerosis even fibromyalgia have similar symptoms too and that most of them r not identifiable in blood tests rather by process of elimination and so far they have eliminated a number of things including H based on blood tests. You give me a lot of hope despite h endo and autoimmune diseases u are so positive ... I know life isn't what happens to you but how you react to it! What r ur sjrogen symptoms if u don't mind me asking? BTW one of my dumb doctors eliminated lichen sclerosis based on my age then researched it and it even affects very young girls. So dermatologist and rheumatologist it is... also my mom has MS and it's hereditary ... ouch

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You're not a burden in the least. I suffer from depression and anxiety as well, so it doesn't help when having autoimmune diseases. Hahaha! My friends would not describe me as a positive person! I laugh when people tell me that on here. I think it's just more that, I've been through that journey and deal w it, so what other choice do I have? I can let it defeat me daily or be at peace w it. I've had my moments, worrying about what this means for my future, as w one or more autoimmune diseases, more are sure to come and I've cried over the unknown and wondering how much longer I'll be able to do the things I love.

 

My Sjogrens started actually w dry throat, which got worse when I laid down and I had to constantly drink water through out the night and felt as if someone was putting pressure on my throat. About a yr after diagnosis, my mouth and eyes (this past summer) became dry, even my nasal cavity was so dry it hurt, during a very stressful period at work. My nasla cavity stopped bothering me about a month later, but the mouth and eyes persisted. I also was experiencing hot flashes and an irregular period when my symptoms first were noticeable and I was 32. They all said my thyroid hormones were good, but my rheumatologist is the one who cqughtth high antibody count against my thyroid and said I was in full blown thyroid autoimmune failure. Sjogrens can cause a LOT of issues, including skin abnormalities and even cause life complicated issues w organs. I pretty much stopped reading about Sjogrens, because it was upsetting to say the least w how bad it can get. Aches and pain in the body are one, like joints, depression, anxiety, nerve disease.. Sometimes I wonder if the reason my nerves got so messed up from H, is because of my Sjogrens. I can't even control H well at all, even if I take 2000mlgs if valtrex a day, because of my autoimmune diseases. I quit my meds two weeks ago and while I experienced more paresthesia than usual and skin change at the bottom V of my opening, I've not had any obs. Just the first week some tenderness where I last got one and I noticed the aching and tenderness in my butt Bone's seem more prevalent, but I wanted to see how this new drug LDN helps w out valtrex.

 

Some autoimmune diseases cause genetic markers that make you predisposed to them, when exposed to certain environmental factors, they can be triggered. My mother has hypothyroidism and endometriosis and type 1 diabetes. I'm the only one in the family that has the other issues.

 

Ask your mother if she's heard of LDN. It has shown massive improvement in symptoms for those w MS and PD. Like those w MS who couldn't walk anymore, are walking again on LDN. It has shown regression in disease and put it into remission and this drug is nontoxic, doesn't cause adverse side effects and isn't damaging like other drug's for MS. Here is a pod cast or you can read the interview of a doc who prescribes it and breaks it done Barney style, for people to understand it. It also blocks the cells that release inflammation in our CNS and peripheral sensory neurons, which I'm hoping will help my H symptoms. It also modulates and boosts the immune system.

http://chriskresser.com/low-dose-naltrexone-ldn-as-a-treatment-for-autoimmune-disease/

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Ok lmao at the advice about the fan. Gosh there r real idiots amongst these doctors. Yeah u have a looooot going on and I'd rather not have anything at all but H is harmless period esp compared to these autoimmune diseases. I understand how the future would worry you ... I'm sure my mother is more than worried about the end she will face with MS. She's walking and for the most part still living a normal life she's had it over 30 years now. She's on some rather new medication and it works well for her I forgot the name. You are right I'm most likely predisposed to something based on family history my dad also had to have his thyroid removed.

 

My bod really is driving me insane and I'm sure being overly aware of my symptoms can't be one bit helpful .... I have to find peace of mind and work on that ... the symptoms u have with sjrogen sound similar as well that the thing with autoimmune diseases they all overlap and have similar symptoms. For me it all started with one day googling chronic genital itch sharp pain that's how I ended up completely seeing ALL of my symptoms under vulvodynia ... but the cause of it was often mentioned as H ... anyhow over a year later the flare ups just seem to get worse and with a multitude of additional symptoms now. But uve been tremendous help.

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I'm not sure if you're sexually active, but when w my ex husband we used condoms and I kept getting severe itching, that was intolerable. They treated me over and over for either bv ir yeast, none of which I feel I had. In fact, to this very day, the very first spot that was itchy (too right crease between clitoris and outer labia) I still itch there and can't get any answers. I've had it biopsied multiple times and this all started 14yrs ago and it's still going on. The more I itch, the worse the itching gets.. I've googled linchen sclerosis and other stuff, and I can't seem to find Jack on it and what's the cause. it's like the constant irritation back then, caused misfiring of the nerves.

 

That's amazing your mother is doing so well w it, after that many years.

 

Seeking a rheumatologist or endocrinologist would be imperative in your situation. I wish you all the luck in the works getting a diag and getting things under control.

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Oh wow 14 years of that crazy itch. Thanks I admire my mom for sure she's a fighter. I was looking at lichen sclerosis matches a number of symptoms as well... but damn biopsies and still no answers. Yeah I'm sexuality active but I'm starting to have nerve pain during intercourse so I'm starting to feel like my sex drive is on its way out the window too... I'll be honest if I could just address one symptom lol it would be the burning sensation in my butt cheeks. Just that lol. I'm SURE U HAVE that one symptom that makes u way more miserable than the rest.

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Yeah, my biopsies turned up nothing either. In fact, they even tests that area for herpes through a biopsy and it wasn't! Go figure, I get genital herpes 13yrs later... If the burning is really bothering you, I'd ask to get put on Lyrica or Neurontin. I took Neurontin for my nerve pain from H during my primary and I had to take it for four months. It helped though, but it takes time to build in your system to reach full effect.

 

Did you ever test for HSV 1 as well?

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Well I saw another doctor because the intense burning on my butt cheeks and traveling down my size has become unbearable ... it's clearly accompanied by itchy painful red sores now they last a few days here and there but it's non stop I go from one outbreak to the next. She said between the burning itching red sores in genitals plus thighs and genital ulcers it's definitely herpes. I told her about the testing she said they could be false results not picking up on antibodies and the virus. I'm so fed up with this and I'm on Valtrex day 2. No relief.

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