How are you feeling @herpescared69
Any recent updates cal or marcus ?
white tongue? do you think its yeast?
Hi another update, bloods and swab just came back negative 11 weeks after, same numbers, but still got all the symptoms, driving me crazy!
Big thanks for the support, I'm like most people right now, feel like killing myself, but sure hope it'll get better
Well it sucks if you end up having herpes, but it does get better mentally and physically over time.
I feel good now. Ive had no problem dating, lots of beautiful women have it.
The stigma is worse than the disease. Try to stay positive. You'll end up getting better.
Thanks man, now getting pain in my groin and small spots on my thigh, think this is it happening
Thanks for getting back. You've been really helpful. Glad to hear you got better and are doing good.
I'm not convinced you have HSV. No antibodies and no classic hsv lesions are signs you don't.
You are having a reaction to something. Virus, bacteria, who knows. You may never get an exact answer from your doctors. I would retest at 90 days and 6 months.
It is amazing your symptoms are exactly like mine. Yes, those spots on my lips look exactly like angular Chelitis too. I also have enlarged fordyce spots on my penis. It's not HPV.
I had the exact same symptoms on my hands and thought whitlow too. They never came back.
I may have had HSV for years and not known it and this was something different. Unless we have something not described yet I would Explore the EM and RA diagnoses.
Keep me informed and tell your doctor you are not the only one with these symptoms. Maybe go to a teaching hospital ? They listen better.
Thanks friend, I sure will, from all the posts I've read I'm sure it's HSV, I feel so sick and ill with burning everywhere, not sure anything else can do this. Anyway my MD told me the tiny white spots in my lips were fungal angular chelitis so I've been putting anti fungal cream on them. Hasn't made a difference so I don't think they are, I think they're somehow related to the HSV. Or fordyce spots which aren't supposed to be contagious but it's a bit if a coincidence they started straight after the encounter. I also got a lot more white spots up my penis like mini hair follicles, some hair has started growing out of these new follicles at the base, but some don't which makes me worried they're HPV. Also had a couple strange spots on my fingers that made me think I was developing whitlow. Skin on my hands has turned very dry and wrinkly. Might get blood test tomorrow which would be 11 weeks, does it make a difference to wait till 12 weeks?
That's interesting. I have the tiny white spots at the corner of my lips also. left side only. No one can tell me what they are.
I wouldn't jump to conclusions. If you've been negative for HSV antibodies I wouldn't assume you have HSV. Maybe you had Chlamydia that started the reaction and your body cleared it.
Just keep seeing your doctors and keep getting tested until you come up with an answer and get better.
Please let me know what you find out.
I have had the white hairy tongue since literally two days after, I freaked that it was HIV too but have tested negative, I've still got it and it's very sore. I've never read this as a symptom of HSV. I wonder if my body will naturally produce antibodies to fight it and it will improve naturally or if I need pharmaceutical help. Also had tiny white spots in my lips at the corners, quite painful.
I am the same, doctors tell me it's stress because of no obvious blister, I just want a concrete diagnosis
I have had the white hairy tongue since literally two days after, I freaked that it was HIV too but have tested negative, I've still got it and it's very sore. I've never read this as a symptom of HSV. I wonder if my body will naturally produce antibodies to fight it and it will improve naturally or if I need pharmaceutical help. Also had tiny white spots in my lips at the corners, quite painful.
I am the same, doctors tell me it's stress because of no obvious blister, I just want a concrete diagnosis
My heart sinks, I was hoping it was coincidence but sounds to me like HSV2 is the cause of all of this, although not diagnosed yet
Yep. I had all those symptoms exactly as you describe.
My tongue looked like I had thrush at one point, which really made me think I had HIV.
I also had swollen areas in my mouth that would move around.
All have pretty much gone away, except my penis skin is always a little more red and irritated than it ever was before.
Oh, and 19 out of 20 doctors I saw told me I was crazy. I was persistent because I knew things were not right. A great dermatologist took the time to listen to my symptoms as a whole and correctly diagnosed the EM and RA.
Out of interest did you have any other symptoms? I've had a white patchy tongue since two days after, constant thirst, dry mouth and urinating a lot, lost appetite and lots of weight. Also my scrotum is red and penis skin appears a lot wrinklier than before, kind of clammy, sticky so my scrotum. Sorry for sick detail!
Hi, I've been to see a few doctors and been tested for HSV 1 & 2 by blood sample at 4 and 8 weeks, both were negative, around 0.4 HSV1 and 0.2 for HSV2, but I took a five day course of acyclovir two days after the encounter to reduce shedding and protect my family so I think that might have had an impact on my results, basically I think I may have it but haven't built enough antibodies yet. So I'm going back for another blood test in a week. I'll ask about Erythema Multiforme.
Yes 5 mins of intercourse has been absolutely devastating
I would say I'm 85-90 percent. I do still feel fatigued at times, especially in the morning. I used to wake at 7 like clockwork and go non-stop until 10 pm each day and now I sleep in until I absolutely have to get up for work.
I doubt I will ever be back to 100%. The buttock and leg tingling and burning is basically gone though. Joint pain is there but very mild.
Still can't believe 5 minutes of intercourse caused this.
Are you going to see a doctor ? I would be interested to know if they thought you had Erythema Multiforme or Reactive Arthritis. You haven' t tested positive for HSV 1 or 2 ?
Hi thanks for the tip, I haven't experienced much joint pain and have been urine sampled for chlamydia four times all of which were negative so fingers crossed I'm okay there, it's more the sore muscle aches, burning in buttocks, left leg, face, mouth and even arms and hands, had quite a lot of muscle twitching in my chest and face too. Extreme fatigue is worst. Do still feel fatigue or are you back to normal?
Are you having joint pain ? Are you having eye sensitivity/redness ?
Were you tested or treated for chlamydia ?
When I was at my worst, about 90 days post exposure, I was extremely fatigued also. I had major joint pain in my knees, lower back, Achilles, toes, knuckles, as well as psoriasis like lesions on my elbows and knees. I was unable to sleep as well. Working was very difficult at this time.
The Prednisone saved me. I was on 40 mg a day for a month, then tapered to nothing over the next 2 months. Being on Pred sucked, caused major anxiety, but it worked for me.
Thanks very much for the update, I'm very glad you're improving, it gives me hope. 80 days following the exposure, every day is painful, extremely tiring, burning feelings everywhere come and go, can't sleep, very difficult. I don't know if this is typical but not sure how much more I can take
Marcus and Golf,
Sorry to hear you are both going through this. I am doing much better now.
After countless doctor visits and many tests my doctors believe I had Erythema Multiforme and a Reactive Arthritis (Reiter's Syndrome). They are not sure what caused the reactive arthritis but one doctor thinks I may have had chlamydia, even though I never tested positive for it. He thinks my body may have cleared it before the tests. I believe it all could have been from the HSV2.
My skin has pretty much cleared up now and the tingling has almost gone away and I am on no meds. I was on High dose prednisone, acyclovir, doxycycline, fluoxetine, hydrocodone, BP meds and Lorazepam for all my mental and physical symptoms at one point. I thought my life was over.
The only issue I have now is some irritable bowel and mild skin irritation that comes and goes. I think this will get better with time as my body gets used to the virus.
This kind of reaction is rare but I think some people's immune systems are prone to have an over-reaction when a foreign substance like HSV2 enters their body. Although a lot of the posts I read on here make me think this type of autoimmune reaction is happening to more people than are diagnosed.
I would see a rheumatologist to consider reactive arthritis and a dermatologist to consider Erythema Multiforme. Good luck !
I've also had lots of really strange spots all over my body since a risky encounter 10 weeks ago, along with pain and tingling in buttocks, down leg, in lips and face, arms and feet. Also constant ill feeling with major fatigue. I've had no classic blisters but the odd pimple on my penis, stinging in my glans and red blotchiness there too. The spots on my body are like individual vesicles, spread out on my arms and legs, they arrive in frequently but stay for a couple of weeks. Also had tingling in feet and hands. Does this sound like what you have experienced from an HSV2 infection? I have tested negative igg at 8 weeks
Thanks
I was reading your post and it sounds almost identical to what I'm going through right now. Had hsv2 for 5 years or so with occasional ob's but for the past 2 and half months been having unusual and constant symptoms same as you describe. I was on the maintenance dose of acyclovir prior, then eventually just stopped as I figured it wasn't helping and I even started to suspect the rash was a side effect that had developed. Been off the acyclovir for a month now and still have this rash and what seems like single spot ob's every few days.
Can you tell me how you got on?