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PostPosted: Mon Oct 19, 2009 5:22 pm 

Joined: Sat Oct 17, 2009 7:27 pm
Posts: 7
My lesions do not have the blisters most sources describe as typical of Herpes 1 or 2. Does anyone else have atypical lesions, more like breaks in skin.

thanks for any info!


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PostPosted: Tue Oct 20, 2009 2:30 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Welcome to the board :)

How were you diagnosed as having genital herpes? Do you have hsv1 or hsv2?

Have you been having an ob for 40+ days as mentioned in your other post?


Most folks do not get actual blisters in the genital area. It's more common to notice breaks in the skin or ulcerations than to first get obvious blisters. Most folks who do get actual blisters, just get them with the first ob and not with recurrences.

betsy

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PostPosted: Tue Oct 20, 2009 3:21 pm 

Joined: Sat Oct 17, 2009 7:27 pm
Posts: 7
Besty1967, thank you for the welcome and details of your reply. I am not sure if I am doing this right, if this will attach to the original thread.

Yes, I have had the skin ulcers for more than 40 days, and my doctor gave me Diagnosis based on 1 positive IgM test, 2 negative (for both 1 & 2 swabs), negative IgG (for both 1 & 2), Since IgM is not type specific he dismissed the negative tests with, "[i]it doesn't matter if it was 1 or 2, that is old school thinking[/i]", when I asked about swabs, he said[i] "IgM is gold standard[/i]," When the swabs were both negative, but from fresh lesions he said swabs aren't as accurate and too easy for swab to be false positive. This made me wonder, well then why did we go to so much trouble to get me worked into his already booked day, twice, to get fresh swabs if he didn't believe at all in their accuracy? He more or less said throwing swab results out, negative, as was IgG, for both HSV1 and HSV2. So I guess my diagnosis HSV nonspecific 1 or 2, if such a Dx even exists? He told me there was no need to ever redo serology as it would not change, which is baffling, as at first he told me I'd be developing antibodies in the IgG. A couple doctors on a "Just Answer" website, those doctors recommended retesting with you service said 'get a 2nd opinion with an Infectious Disease specialist" but when I have called my local ID specialist offices stating I'm looking for a 2nd opinion the staff is suddenly drained of any hint of welcome or warmth for me and instead icily dismiss me with "we don't treat STD"s, you need to check with another gynecologist." So, as you can see this forum is quick becoming quite the gold mine for educating myself.

I am finding it very difficult to find out who specializes in STD and wants to treat it.


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PostPosted: Wed Oct 21, 2009 9:11 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
you can not diagnose herpes based on a + igm. Your doctor erred in thinking you can.

At this point I recommend seeing a different gyn. get a repeat of your gyn exam and testing for yeast and bacterial infections too. It's not likely that this is herpes going on for 40+ days like this.

If you have a regular partner, they too should get tested for herpes.


At this point unfortunately you don't know at all what is going on so don't focus on std's as much as gyn issues and go from that angle at this point.

keep us posted on how it all goes :)

betsy

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PostPosted: Wed Oct 21, 2009 10:00 pm 

Joined: Sat Oct 17, 2009 7:27 pm
Posts: 7
Thank you Betsy, you have no idea how much your reply means to me on so many levels. It has given me direction on how to approach specialists. And yes, I have a lifetime partner, my husband, who tests negative. So you see, even that means my doctor apparently did not believe me because he said it was all but certainly a new infection because only IgM showed up. Wouldn't it be nice if patients could know IN ADVANCE, if doctors were required to POST PUBLICLY exactly what tests they use (even the test brands, and where specimens are sent) to tests for Diagnosis like this, like STDs, that have such huge emotional impact.

There is hardly any other context where we are payingsomeone and that person is totally is allowed to treat us with so little regard or respect, (and in this case, even with competence). Providers who are arrogant and decide what the dx is probably before they even meet you and go ahead and stick to it for the sake of ego. I realize this is a much broader patient advocacy issue, but I can dream, and from reading here, members have taken their Dx's pretty hard and how many Gynecologists will I need to see before I find one that doesn't think IgM is the "definitive method of Dx"? I am not meaning to complaining, I am just raising the question for all of us to think about, because if patients don't demand it, I doubt we will ever get it. And in some cities they docs all know each other and hesitate to go against what a colleague may have found. I know I WILL find one, but I just wonder how long it will take.....

How long before I find a GYN who understands what the International Society for Sexually Transmitted Disease Research believes (Dr. Handfield being the only source I've seen directly saying IgM is not reliable for Dx), and ACOG, and AMA, and CDC, NIH, all have less definite policy statements, that seriolgy "may be helpful." Still, isn't it interesting that patients know what the criteria of all these professional associations say about IgM as diagnostic tool? But the "specialist" either is not aware or doesn't care. Or maybe they live so much for their ego they are more interested in looking and feeling right and feeling in charge. If only there were more ways to assess all doctors before we have to go in and meet them and learn the hard ways.

most grateful to have found your forum and for your prompt reply.


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PostPosted: Thu Oct 22, 2009 3:50 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
the asha herpes testing toolkit also includes the information on the igm not being helpful. It's less than $3 for the booklet .

Also a few articles out there one being :
Common use of inaccurate antibody assays to identify infection status with herpes simplex virus type 2
American Journal of Obstetrics and Gynecology, Volume 193, Issue 2, Pages 361-362
R.Morrow, Z.Brown

the igm info is on page 2.


Last year I was at a lecture that Terri Warren gave to a group of providers near me near a very major university. when she told them that you couldn't diagnose based on the igm for herpes, I almost thought I was going to have to get up and manually close the one doctor's jaw it hung open for so long. She comes right out and tells them that anyone you've said was + for herpes due to a + igm only, needs brought back into the office and properly tested. she also tells them they can be sued for diagnosing based on the igm only. slowly the info is getting out there thankfully but not fast enough!

I understand your frustration trust me!!!

betsy

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PostPosted: Sat Feb 27, 2010 3:32 pm 

Joined: Sat Oct 17, 2009 7:27 pm
Posts: 7
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.

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PostPosted: Sun Feb 28, 2010 11:45 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
I edited your reply a little just so it's easier to see - removed the prior post info that was in it since it's all in the same post. I didn't want folks to get confused and miss the most important part of your update!!

I'm SO glad you sought out additional help and finally got answers as to what is going on! Cases like yours is EXACTLY why I volunteer my time on the online boards :) So many things besides herpes that can be going on in our nether regions. It should be part of the differential diagnosis initially but not something they insist on when lab tests tell you otherwise ( unlike on House, not everybody lies and sometimes just because it has feathers, doesn't mean it's a duck ). I like to think that my experience as a patient as well as my education as a nurse, help me to help folks better than some of the help you get elsewhere. I also spend a lot of time to try to keep on top of things in general as far as herpes testing and treatments too. I'm part of a good circle of herpes researchers too who always keep me up to date on things because they know what I do online ( I'm gracefromhhp over on medhelp where HHH , Hook and Terri Warren are at too ).


Yes indeed you can have reactions to topical anesthetics like lidocaine. they aren't made for long term use either. Depending on your GI issues, they could've even started the whole thing too and then you had the complications on top of it all :( I'm just glad you found answers and relief finally for all of it ! Of course it's not exciting to say that you had diaper rash but it can be a little entertaining to say so with certain friends...he he he

I'm glad you came back to share your story and update the forum : ) So many folks will be helped by reading what you went through I know!

You did celebrate that you don't have herpes too right?

betsy

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PostPosted: Thu Mar 04, 2010 9:17 pm 

Joined: Sat Oct 17, 2009 7:27 pm
Posts: 7
Betsy, thanks for your edits, I added a few more, to add clarity, some how being away from writing is the only way I can spot my own errors. Yes, I did indeed celebrate not having the Herpes diagnosis, and I learned pretty quick the stigma of such a Dx. The GYN and the GYN's staff treated me entirely differently after the incorrect Dx of HSV(they don't know, I just never went back). One nurse actually made the comment "but [i]you don't look like somene who we would be testing for that[/i]." It's a good thing that she said it while on the other end of the phone, as I believe my instinct would have taken over and security might have had to escort me out by the time I got done telling her what a puritanical notion it was that you would know what someone looked like, I would have cited statistics for the whole waiting room to hear, how prevalent it is, how, well that I think you see where the rant would have been headed. Instead I just took an hour or so for the shell shock of her comment to wear off. I would never have thought the change in how I was treated could happen instantly. And if I thought I was imagining it, the Infectious Disease offices refusal to even discuss STD confirmed it was not my imagination. Still many medical people with head in the sand it would seem.

I continue to applaud your contributions, you armed me with what I needed to find courage ask my GI Specialist. I'd run out of options with GYN. And it was wonderful to having people believe in me. You and my GI specialist. I am so very, very grateful for all of it. It was very much a patient empowerment journey. I am most sorry to learn how it feels to walk a few months in the shoes with an STD. In the places I walked, it meant I was treated differently. I didn't pick up the generic valtrex at my usual pharmacy, because I couldn't stand the thought of them treating me differently too. It's something I won't forget

I will watch for you on the medhelp. Know that you help many, many of us, for everyone of us that makes it back here to make sure you know your impact, there is probably 10 times more that feel it, but didn't get back to the board because, for whatever reason, it wasn't the problem at the forefront of their life. Actually, your words meant I could get the correct diagnoses and find a surgeon for another problem which I had December and believe it will also improve the quality of my life. I didn't tell the new GYN, the only one left that was not affiliated with places I'd been about the IGM results. I carried in a recent pap and recent mammogram and a few other diagnositics and he focuses on the diagnoses I actually had, and treated them with robot-assisted laparoscopic surgery. I wouldn't not have been able to move on resolving a collection of much more debilitating conditions that I believe the surgery, and positive energy from places like this, will an enormous amount of chronic pain and fatigue. So you are even part of the bigger picture of my health. I hope some day to have some non profit foundation that will make an award equivalent to the Nobel Peace Prize level recognition of health professionals like you who make the real difference. I want it to be so well known and so coveted it will get red carpet treatment like the Oscars, because there should be applause and recognition for those who remind us we can always take back the power. You helped me take back my power. I thank you again.


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PostPosted: Fri Mar 05, 2010 3:03 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Oh I'm so much simpler than the red carpet dear...lol. As Fredo will attest to - just buy me lunch now and then and send me a couple of glow in the dark pens...he he he anything more than that and I have to worry about my hair and what I'm wearing which stresses me out far more than herpes ever could....lol.

I do this because I want others to think of herpes as a foot note in their life story, not the title of their biography or even the title of a chapter in it. I also know how easy it is to get a wrong diagnosis too like you did so helping folks get through that and get proper, accurate answers is important too :) So many myths out there, so much bad advice, too many "scary" stories from folks who aren't getting proper follow up and think everything they have is herpes and that it's a horrible thing. This is a place for accurate and up to date information and support for folks to find so that they can help others as they've been helped by finding the right information :)

betsy

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