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National Cervical Cancer Coalition


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PostPosted: Sat Feb 27, 2010 6:25 pm 

Joined: Sat Oct 17, 2009 7:27 pm
Posts: 7
I am reposting this under a diffferent subject line because I hope anyone who might be in situation will find possible answer sooner than I did. Will see how committed some doctors remain to a particular diagnosis, regardless of the fact that the symptoms don't fit the parameters and a patient is getting INCREASINGLY worse. My skin was cracked and bleeding, and the solution was so simple. If I had listened to the first GYN my marriage might have been in trouble because I hadn't been with anyone else. Do they never think, even for second how such news could bring a relationship to an end, because they are telling you, as if there were absolutely no room whatsoever for doubt, that it is only transmitted from sexual activity. So the doc is either tell me I am lying whore, or my husband is. Either way, the GYN was completely wrong, and completely wrong about what was the "was absolute, was the gold standards" in science and medical circles. Instead he aggressively and definitely wrong. Would not look at brochures or info I obtained. Just kept increasing my dose of Valdrex, till it was TRIPLE the regular dose. And I got worse. It was the words of the Betsy, below, and a search I did on the person she named, and the sources that kept me moving forward with conviction and confidence. Obviously I will not be going back to the GYN, or the one that came before him. Amen for my GI specialist and his willingness to consult another GI specialist to make sure his first inclination was right. see that? his ego was not too big to think he might not be able to call it. He isn't 'phoning it in." The irony: the GI Specialist is widely published for groundbreaking work on my condition, erroneously treated as IBS (as in it's anxiety, go walk it off lady, it's not gonna kill you). It wasn't IBS was something that needed a specific antibiotic protocal, but another example for suffering needlessly an how the people doing the most for medicine, for the future of medicine, and for the patients who they watch suffer who they genuinely care to make better. I guess find it ironic someone so accomplished in medicine is more open minded, more caring, more respectful, than the self important doctor here locally. The specialist I must travel to, but we worked with photos until I could get there in person. And he made room in his schedule. My story follows Betsy explaining GM is not accurate prediction.

[u][b][quote]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!!! [/u]

betsy[/quote][/quote][/b]

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[/quote]

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 it could related to the GI condition, he dismissed it with that gesture that is just as well be 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 I had taken and he sent them with my history (2 negative HSV swabs), and within hours they agreed the diagnosis was Pruritus Ani with "skin damage due to medications." (Pruritus Ani fancy term for basically a diaper rash, the definitions online emphasize itching, but that was not the most pronounced part of it for me, it was stingying and burning from skin torn open) 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 it 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 and following low acid diet (avoiding coffee, tea, nuts, tomatoes, chocolate, diary; which are all high acid). It was nothing short of miraculous, and I am sorry I didn't make it back here 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 in my head about the ego minded GYNs who cared more about being right than curing me "[i][b]first do no harm[/b][/i]," and the topical solutions 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 he had my answer in less than a day. I should have started with him but the GYNs has do sweepingly dismissed it with non verbals that screamed "oh that is so ridiculous" I was embarassed to bring it up with my GI specialist. But I sure learned an enormous amount about STDs.

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 "[i]we don't treat STD's[/i]", and even when I said "[i]well that's why I am seeking and ID specialist, I don't think I have one, I want a 2nd opinion[/i]." 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 manageable 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 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.


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