Yes, I can suggest a website called MpWH, which is a site for people with herpes to talk to others who have herpes, some date, some don't. There is also a herpes support group on this website. Some larger cities have in person support groups, and you could find out more about them through ASAHSTD.org.
I hope at some point you are able to come off Valtrex and get an accurate antibody test. It will help you get clarity, one way or the other.
As an aside, I'm amazed that medical school spends even half a day on herpes, that's good news!
Terri
Thanks Terri.
I actually graduated from an MD program a few months ago here in the US and have taken time off before starting residency. I start residency off cycle next month, which is why I'm so afraid of having an outbreak right now - it would make starting residency incredibly difficult.
Why this is so hard for me to accept is that I am (or will be) in the medical profession with such a stigmatizing disease. It's a difficult thing to accept because I know this is all because of one awful decision on my part.
I definitely have been researching alot on herpes on the internet, primarily because in medical school, we spent maybe half a day on herpes, but otherwise my experience has been limited only to classic symptoms - the painful vesicles, erythema, etc.
I'm simply applying Ockham's razor to my symptoms, trying to find a unifying thread between it all, and the simplest solution appears to be herpes. That said, I admittedly don't have the experience you or many experts on here have, which is why I'm searching so desperately for help.
I appreciate your advice on volunteering, which I've certainly done in the past and will try to pick up, although once residency starts in a week, I'll be busy enough. The stress of residency, however, may simply increase my number of outbreaks, which adds stress unto itself.
At this point, could you offer any online or offline herpes resources or support groups that I could look into? I think knowing that this disease is common and that my life and sexual life can continue in a fulfilling way and that it doesn't make me a present-day leper would be reassuring and helpful.
Thanks again for your patience and for being here for me.
You seem pretty convinced that this is herpes, and all I can say is that going off the Valtrex will allow you 1) a more accurate antibody test down the road and 2) an actual outbreak to occur if you do have herpes.
I can tell you've been reading on the internet a lot about herpes - the language, the description of lesions, etc. My advice would be to get off the internet.
Let's say you do have HSV 1 genitally, which I don't think you have. This would be a mild and infrequently recurring problem. I think you've blown this into something huge, and you seem very focused on everything down there. My advice would be to go volunteer somewhere while you wait for another test, help people who have serious problems. It will help you get perspective on your own. That's what I do when I'm all wrapped up in something. It helps.
Terri
Hi Terri,
Thanks again for your patience with me and response.
I can definitely understand the benefit of going off Valtrex.
However, I have recently noticed an itchy and burning sensation on my upper left buttock area - again, came out of the blue. I looked in the area, and noted pretty significant erythema. I've never had this burning itchy/tingling sensation there. Nothing has yet developed, but I continue to have flu-like symptoms, feel dehydrated and generally worn out.
While I realize this could simply be a host of multiple bugs affecting me at once, I really can't help but shake the idea that this could just be one thing - herpes.
I have noticed that ever since continuing the valtrex, the urinary burning and urgency has now resolved.
I'm obviously in denial right now, mainly because I don't want to believe I have herpes from this one terrible experience.
That said, I will continue off the valtrex, but is there a real benefit to doing this if my constellation of symptoms is fairly consistent with herpes symptoms? I guess I'm wondering if I really need to wait things out until I develop painful grouped vesicles on an erythematous base in order for me to be diagnosed with herpes?
I have def noticed symptomatic relief on the valtrex, and is that - coupled with the new skin manifestations, malaise, burning/itching and nerve pain, preceded by urethritis and dysuria - a good enough indication that this is what i fear?
I guess I just can't imagine any other urethritis causing any associated skin conditions and neuropathic type pain outside of herpes.
Thanks again for your help here. It's been a very lonely, painful, and difficult process to deal with.
Look at it this way - if you develop lesions, then they will be much more identifiable by a clinician, which is a good thing.
Many things can make you feel badly and have the generalized symptoms that you are experiencing, I'm not at all clear that herpes is the culprit.
Yes, herpes can present with non-specific symptoms, but mostly when a person already has HSV 1 and acquires HSV 2.
Terri
Hi Terri,
Thank you so much for your reply. It means a great deal to me.
I did get a urine GC/Chlam test, which came back negative, but I was treated with IM rocephin and 1g azithromycin.
My symptoms didn't improve, except for when I started taking the Valtrex. I know I shouldn't be taking it, but I was so worried about how my symptoms would progress if this were herpes and I felt some symptomatic relief (with regard to the dysuria and urgency) when I started it.
I went off for a bit, but then the symptoms persisted and I noticed the two black lesions in my public area - so I went back on it to prevent a worsening primary response.
I did see an urgent care physician today - he repeated the UA, which again was negative. He has referred me to a urologist, but he acknowledged that while herpes was unlikely based on my present symptoms, it wasn't out of the realm of possibility and that I would need to follow-up on my blood work in a few weeks.
He also checked out my lesions, and he could not identify what they were. He only noted that they didn't look like classic herpes lesions. Otherwise, he was completely unable to identify what they specifically were.
But, from what I understand, there's a study from the Univ of Washington that showed that the cutaneous manifestations of herpes can often masquerade as very different things.
The discharge is no longer occurring - I'm not sure if that's because I'm on the valtrex now or not...
My concern is that the constellation of symptoms that I do have - the urethritis, the nerve tingling, the new and unusual skin lesions that cropped up after I got off the valtrex, and now the muscle aches (my left shoulder inexplicably aches to the point of limiting my range of motion), flu-like sx and fatigue/constant dehydration - all suggest a smoldering viral or herpes infection, potentially mitigated by my taking the valtrex.
Are my symptoms completely unheard of in individuals who have had a primary herpes outbreak? I know you mentioned my symptoms would be worse if it were herpes, but I guess my taking the valtrex has made my symptoms less severe?
I will certainly get off the valtrex - I'm just worried because I'm afraid of the worsening of my symptoms, the new lesions and sores that may crop up, and the worsening of my flu-like sx as well - especially at a time when i am preparing to start a stressful job-life
Thanks again for your input. I am not in any way trying to create push-back, because at the end of the day, I am trying to believe with every part of my being that this isn't herpes.
It's just that the symptoms are so strong for me, and I wouldn't have a reason to feel this poorly throughout the day if it weren't actually happening to me
Other things can cause urethritis besides gonorrhea, chlamydia and herpes, they cause a syndrome called NGU - you can look it up. Were you treated with any antibiotics? Was the discharged analyzed under the microscope?
If you want accurate herpes testing in the future (antibody) STOP TAKING VALTREX. It can confuse future testing. Without a diagnosis of herpes, you shouldn't really be taking this, in my opinion. The dark areas are not a worry. The raised lesions in the pubic hair need immediate evaluation.
Many people get sores in their mouth (canker sores) when they eat certain foods. Canker sores are not caused by herpes - this is different than cold sores.
I don't have the opinion that you have HSV 1 based on what you've said. If you contracted herpes recently, with no HSV 1 or 2 antibody, I think your symptoms would be far more dramatic than what you are describing here. But you'll want to retest with the IgG test in about 4 months from the exposure.
Terri