Depressed, confused, any help appreciated...

[Denver_Girl]

I'm 28F. In hosp for 2 weeks- tests, catscans, xrays, bloodwork, ultrasound, etc. Mono came back + (had mono when 16, & had it again). Also had strange little blisters- couple on one shoulder blade, sev on my lip, sev on my hand, & one on bottom big toe. Mentioned chicken pox, limes disease, hand-foot-&-mouth disease, herpes, etc. Put me on acyclovir in the hosp & was taking it up until 2 weeks ago. Since being out of the hosp, have only had the blisters reoccur on hands...in same spots. They come & go on same fingers...never on palms, not between fingers, not tops of hands & not anywhere else. I went to an ID doc, unsure that acyclovir was helping. He spent 45 mins talking about history, touching blisters, even shook my hand on purpose when we left, as he was pretty sure that these were not herpes. He sugg seeing a derm. Did a biopsy on my thumb...took a chunk of "healthy" skin, & a chunk where some blisters were. The blisters never pop- they come, fill up, get tight & a bit painful, then dry up & eventually flake off. They have never opened, oozed, or look like the typical pics you see. The derm looked, poked at them, & didn't feel they were herpes. They told me herpes came back as what I have. I don't have them in genitals, nor have I ever had a cold sore. I see it 2 types- gential & oral herpes. I cant find things saying they're on your hands...or describe similar symptoms as mine. I feel guilty if I've unknowingly spread what I have. I want to know HOW contagious this may be...how I'm supp to live a "normal" life?? I think of family & future people I'd want to date- sharing drinks, kissing, holding hands, eventually having sex, etc. I feel as though my life is over- depressed, wanting to lock myself away from everyone...and hurting, knowing that if I want to date, how do I tell someone "I have herpes- don't touch or kiss me, or you'll get it". What about having kids??  My biggest fear- touching other people (family, people I date) and spreading it.

[MLWTR]

I wonder if what you had when you were hospitalized was shingles? Shingles is herpes zoster, and it is different from oral and genital herpes (herpes simplex), but is treated with the same antiviral medications.You could perfectly well have had shingles when you were hospitalized, and also had, and still have, dyshidrotic eczema (eczema tends to be inherited, and comes and goes as it likes). Nobody can catch eczema, but someone who hasn't had chickenpox who is exposed to shingles may come down with a case of chickenpox. But this is not an issue if you have already cleared the shingles, and you may well have. Anyway, these are just some thoughts, and I'm a medical writer not a doctor. But I just wanted you to know that not everything that's called herpes is a sexually transmitted disease. Good luck getting some answers (and I think the doctors who told you you have herpes owe you a better explanation of how what sort of herpes you had or have).

[H. Hunter Handsfield, M.D.]

Sorry I missed it, but I still don't see where you said the herpes diagnosis was confirmed. You need to check further with both the ID doc and dermatologist.  If based solely on the biopsy, other confirmation is necessary; the appearance under the microscope may or may not be definitive for herpes simplex as opposed to other problems. If your problem is really due to herpes, laboratory confirmation that you had HSV-1 or HSV-2 should be available.

There are very rare cases of disseminated HSV infections that might cause multiple skin lesions, especially if there is simultaneous severe eczema (eczema herpeticum); or even without eczema.  But this really isn't an STD problem and I know much less about it than your own doctors.  (The problem might be acquired sexually, especially if it is HSV-2.  But STD specialists don't provide care to such unusual or complicated cases.  Even as a joint STD/ID specialist, I have never personally seen a case in my 30+ years in this business.)  However, I can tell you that if this is what you have, it lasts a few weeks, the body-wide lesions clear up, and at that point the infection is not transmissible.  You're not going to be a risk to your nonsexual personal contacts.

Please follow up with your own providers, especially the ID specialist.  Best wishes.

[Denver_Girl]

I truly appreciate your response. I don't know if I made it clear- they told me I have herpes. They took several chunks of skin and did a biopsy. So...could that not be 100% accurate?? Since my post that I put on here several hours ago, I was also looking at herpetic whitlow. The dermatologist's office told me that I DO have herpes...that it came back positive. I'm so confused....as I see many reports, etc. that say herpes can be mis-diagnosed. I'm curious, how reliable are tests that diagnose you with herpes (in one form or another)? In my research, I have also recently came across dyshidrotic eczema (dyshitdrotic dermatitis) and that sounds similar as well. I have been freaking out all day today..that I can't touch, kiss and family members and people I date, but am wondering what the possibility is that what I have has been misdiagnosed as herpes. If it's herpes...it's herpes (and maybe herpetic whitlow??). And if it's possible that there's a small chance of it being diagnosed as herpes that can come back falsely, what about dyshidrotic eczema? I've been crying all day...cutting myself off from family and friends, afraid I'll spread this disease to them. Just lost and confused...hoping for some more defined answers perhaps. Thank you so much for any further advice/info!!!

[H. Hunter Handsfield, M.D.]

I would like to help but cannot. No distant provider can give valid advice compared with the extensive expert evaluation and advice you have had.  I'll just say that you describe no symptoms to suggest HSV of either type.  You seem to make the assumption that just because HSV can cause certain kinds of skin lesions, all persons with such lesions have herpes.  That's like saying that because pneumonia causes fever, all people with fever have pneumonia. You know that's nonsense.

I don't know what you have, only that it isn't herpes.  Follow your doctors' advice; it sounds like they have given you excellent care. If you cannot shake the irrational certainty or fear you have herpes despite all evidence  --  and that is what it is, irrational -- talk to your doctors about evaluating the possible need for professional mental health care.  I suggest it out compasion, not criticism.

Best wishes--  HHH, MD