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Sacral Herpes... :/
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Sunnyflorida1988 posted:
Hello all, I have some questions regarding sacral herpes that I hope you can help me with. My mom has this virus that appears on her lower back and buttocks from time to time. She's had it for about 15 years. My first question is if this is a sexually transmitted disease, because my father has cheated on her with multiple people in their time together yet to my knowledge, he doesn't have the disease. Well, the other day at work , she said her thigh started itching horribly and she was scratching herself with her nails very intently. The next day she was bruised really badly. Her whole thigh was practically purple. She went to the doctor who said it was because of the virus.....i dont see how that makes sense, there are no lesions on her thigh. Next the doctor said that in time, when she's much older, her whole body will develop horrible bruises, again, because of the herpes, id never heard of that before. This was a younger doctor so im not prepared to accept her facts wholeheartedly. She is prescribing a medication to prevent outbreaks, but my mom had this disease for so long, shouldnt it have been prescribed before? And they also want to prescribe vitamin b12. Can anyone help me understand this? I'm really confused. :/ thanks!
Reply
 
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betsyo1967 responded:
unless your father has been tested, no way for him to know his status. he can get a type specific herpes igg blood test to see what his status is.

if she had a herpes lesion on her leg and scratched it a heck of a lot, it can cause bruising. she can have herpes lesions anywhere from the waist down. does herpes in general cause bruising? no it does not. I certainly disagree with if she was told that she would have bruising because of herpes. perhaps a 2nd opinion is in order for her .

yes, your mother's herpes infection is still genital herpes and it is sexually transmitted.
Talking about std testing is NORMAL and something we all should be doing EVERY TIME before we have sex with a new partner :)
 
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Sunnyflorida1988 replied to betsyo1967's response:
Thanks, yes i really do want to get a second opinion and actually be there when the doctor is talking so I can ask all those questions because that doctor kind of freaked me and my siblings out. Were really worried. And my mom married my father when she was 20 and he was her only partner, yet he has had 20 Im sure. And now his idiotic ways have caused my mom to live with this burden for the rest of her life. Its really upsetting for us. Thanks betsyo, I really appreciate your input. I also heard she told my mom that she has this virus because it is the same virus that caused the chickenpox and the virus was dormant all this time until it expressed itself starting 15 years ago. OK, i KNOW that chickenpox is from the same family as herpes, but doesnt this sound ridiculous? I want to see her credentials. -_-
 
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intheknowkc replied to Sunnyflorida1988's response:
Hello Sunny FL! I am hopeful that I may be able to shed (no pun intended) some brighter light on your mom's situation. I do not believe your mother has any form of herpes. Now, with that said, let me tell you that I am not a doctor; I am a journalist. I am also someone who has been told for the last 25 years, that I had some form of Herpes, or Shingles (caused by the Herpes Zoster virus, which is also responsible for Chicken Pox). This INTENSELY pruritic (itchy) rash first appeared on my hip when I was about 30. I was seeing a dermatologist at the time, who took one look at it and said "herpes"! At least 6 doctors since then have seen the rash, and ALL came to the same conclusion (VISUAL) examination. Now for the (good?) news: there just happens to be a rash in existence, that looks identical to herpes. It is called "dermatitis herpetiformis" and it is not related to Herpes in any way...it only LOOKS like Herpes, and most of the time, it itches like the devil. DH, as it is called, is the skin manifestation of Celiac Disease (an autoimmune disease of the small intestine). The only true treatment is a strict Gluten-free diet. Unlike many Celiac Disease sufferers, those with DH usually have an asymptomatic intestinal disease. Both diseases respond well to the STRICT gluten-free diet. Wikipedia has some good information on DH, as well as some other websites. Another difference for those with DH, as opposed to those with Celiac, is gluten ingestion via skin contact (think body lotions and shampoos) as well as a sensitivity to airborne sources of gluten (think spaghetti boiling with gluten-filled steam or bakeries). If your mother has DH, or Celiac Disease, the rash should disappear after she no longer ingests or comes in contact with gluten. There is some important info on how DH is diagnosed. Only a knowledgeable dermatologist will know to BIOPSY the skin ADJACENT to the lesion, and not ON the lesion. Please read the following link from Celiac dot com: http://www.celiac.com/articles/176/1/Dermatitis-Herpetiformis-Summary/Page1.html And good luck! Feel free to contact me with any questions.
 
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intheknowkc replied to Sunnyflorida1988's response:
Hello SunnyFL88! I may have some (good?) news for you and your mother. She may NOT have any type of Herpes, regardless of what the last poster decided. Like your mom may have, I have suffered terribly, both physically and emotionally from a Herpes (mis)diagnosis. I, like you and your mom, and most doctors, did not realize there was a rash out there that looks exactly like Herpes but IS NOT Herpes at all. What you describe sounds exactly like what I have...and it is called DERMATITIS HERPETIFORMIS. It has nothing to do with Herpes or Shingles (the Herpes Zoster virus responsible for the Chicken Pox). DH , as it is called, is basically the cutaneous (skin) manifestation of Celiac Disease, an autoimmune intestinal disorder, primarily genetic in nature. The only true treatment for both Celiac Disease and DH is a strict gluten-free diet. PERIOD. "Gluten" refers to proteins from products that contain any form of wheat, rye, barley (oats cannot be consumed by many with Celiac either). It is estimated that about 1 in 100 Americans have Celiac, with 95% UNdiagnosed (or misdiagnosed). About 20% of Celiacs have DH, according to the latest numbers. Unlike most Celiac sufferers, DH folks are largely asymptomatic for any type of intestinal disorder even though the ingestion of gluten destroys the small intestines of both and is very serious causing malapsorbtion of nutrients and fat soluable vitamins. B12 deficiencies are one of the telltale and biggest symptoms in undiagnosed Celiacs & DH sufferers. Only a dermatologist who specializes in rare diseases will know how to properly diagnose DH. Also, those with DH, unlike their Celiac "sisters" must remove sources of skin-contact gluten (think body lotions and shampoos, scraping wallpaper which contains wheat starch in the paste) as well as airborne sources of gluten (think breathing in steam from pasta cooking or walking in a (non-gluten-free bakery) Only a ver
 
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intheknowkc replied to intheknowkc's response:
Sorry about the double posting. After I had written the 1st post, I pressed submit, but got an error msg saying my response did not post! Aaarrggghhh...so I wrote another, but then pressed submit by mistake before I was finished. Only othwr thing...as I mentioned, the genetics are strong in this disease. If your mother has Celiac/DH, then 1st degree relatives should be tested annually. A blood test for Celiac is available, but will give false negative results for anyone who is IgA deficient (like me). False negatives are common, regardless of what dr.s say. Celiac dot com forums continue to be the greatest resource for sufferers; they have an entire section there dedicated to DH discussion. Anyway, I think you have enough info to go on, and if not, like Imsaid, feel free to contact me if you have any questions. I will be sending positive thoughts your way.
 
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betsyo1967 replied to Sunnyflorida1988's response:
chicken pox is a different infection completely. it can reoccur when you are older as shingles though. perhaps this provider diagnosed your mom with having shingles? shingles won't reoccur though so the sacral herpes your mom has is herpes simplex, not herpes zoster.

definitely she needs to see someone who has a clue!!!
Talking about std testing is NORMAL and something we all should be doing EVERY TIME before we have sex with a new partner :)
 
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intheknowkc replied to betsyo1967's response:
Oh, one more thing to let your Mom know Sunny... I went around for years asking people who I learned had herpes, if their herpes ITCHED! In every case, I was told "it hurts, it is painful, but does not itch". Therein may lie the difference for your Mom, as you describe intense ITCHING, which is consistent with Dermatitis Herpetiformis, and not herpes. And the above poster is correct: Shingles (herpes zoster) is not a chronic, recurring rash. However, DH is and is misdiagnosed as Herpes by most physicians. Bear in mind too, that many photos of DH on the net are shown of the most severe cases. The Wiki DH link clearly states the rash varies from very mild to very severe. I never had but one or two small herpetic lesions until I was gluten-free for several months and accidentally consumed something that contained gluten. When that happened, the rash reappeared with a vengence, clear across my lower back! Here is the info from Wikipedia on DH: http://en.wikipedia.org/wiki/Dermatitis_herpetiformis http://en.wikipedia.org/wiki/Dermatitis_herpetiformis


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