Betsy, apologies for not replying sooner, as your reply changed my life, quite literally. Turned out the misdiagnosed HSV based on IGM (despite 2 negative swabs) was a GI related skin condition. I went to my GI specialist because my skin lesions were in peri rectal and rectal area. I had suggested the GI diagnoses I carry might be related to the GYN who was giving me lidacaine creme and triple doses of Valdrex (which was making my hair fall out). When I had suggested possibly be related to the GI condition, he dismissed it with that gesture that as well have been an all out eye roll. But when I found your site, and I got this reply I knew I wasn't going back. It was one of those scary moments (and yet emancipating) when I realized I now knew more than the GYN. The GI specialist took photos my husband had taken had taken and he sent them with my history (2 negative HPV swabs, husband positive only for HPV1), to another colleague and within hours they agreed the diagnosis was Pruritus Ani (fancy diaper rash) with "skin damage due to medications." So the lidacaine cream and steroid cream (as I had been to 2 GYNs already for this) was actually making it worse, was why no longer had small stretches when the leisons totally disappeared. And after an 8 week stretch of vicious pain and uclerated skin, 99% of symptoms abated in less than a week. The treatment, over-the-counter Zinc Oxide ointment (yes, you find it in the diaper section) and following low acid diet (avoiding coffee, tea, nuts, tomatoes, chocolate, diary; which are all high acid). These low cost, low tech solutions, werenothing short of miraculous, and I am sorry I didn't make it back here to the forum sooner as I hope this may help others who doctors insist on ignoring negative swabs and going with IGM. I kept hearing the Hippocratic Oath "first do no harm," in my head about the ego minded GYNs who cared more about being right than curing me, or even diminishing my symptoms. And their so-very-sure-they were right treatments were actually causing tissue damage. I hope this gets out, as I was amazed that things so simple abated my symptoms almost entirely after treatments for 6 months that was actually cause tissue damage.
Your site is a godsend, I thank you for the citations and I showed your reply above (without the names) to the GI Specialist and that past president of an international society on STD's said IGM was not reliable. And my GI Specialist had my answer in less than a day. I should have started with him but the GYNs has sosweepingly dismissed such a suggestion (that might mean a call to colloborate with my specialist) with non verbals that screamed "oh that is so ridiculous" it I was embarassed to bring it up with my GI specialist. But I sure learned an enormous amount about STDs along this path to right Dx, and armed with your citations my scientific arsenal made my embarassment diminish and move forward.
I don't remember if I mentioned that when I asked an online forum of laboratory scientists, who answer questions at no cost, volunteer run, they had suggested and Infectious Disease specialist. I can hardly describe the horrified rejection I felt when 4 infectious diseases offices would told me "we don't treat STD's", and even when I said "well that's why I am seeking and ID specialist, I don't think I have one, I want a 2nd opinion." They practically hung up on me. I am in a small enough metro area with limited insurance network that I didn't think another GYN would do any good, as they all know each other.
Anyway, I hope no one else has to go through this and feel very blessed that I have a much, much more managable diagnosis, using treatments that are not INCREASING damage, especially since the side effects of generic Valtrex (which I hear they are taking off the market), was causing other harsh side effects in addition to the topical treatments causing possible permanent tissue damage.
so very, very grateful for your facts that gave me the confidence to keep pushing forward in a medical culture that doesn't often like patients telling them we believe we have the wrong diagnosis.
Hope this can be posted where people diagnosed with IGM can find it and learn their ego-driven physicians are treating the wrong conditions.
Last edited by eppbkrs05 on Thu Mar 04, 2010 8:52 pm, edited 1 time in total.