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Anyone Who Has Been Misdiagnosed With Herpes

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For over 15 years I would get this rash on my back at least 10 times per year. The itchiness would drive me crazy and there were blisters that would have watery stuff in them and spread like mad. I was originally told by my primary doc that they looked like shingles, but I have never had chicken pox and do not have antibodies (per tieter) to chicken pox. Even had the vaccine twice but it didn't "take" so I have always questionned the shingles diagnosis since you have to had have chicken pox to have shingles.

So this spring a different doctor took some of the fluid out of the watery blister, sorry it's gross I know, and said that it came back as Herpes Simplex. I was really taken aback by that one I tell ya!!!! Just on my back? That's the only place if you know what I mean.

In the meantime my husband, kids and parents all agree it has looked just like DH based on the pics from the internet.

The big thing is that since I have been gluten free since June I have not had the rash again!! This is the longest I haven't had the breakout, ever.

Any thoughts? THanks!!!!


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sooo, the name Dermatitis Herpetiformis means herpes-like dermatitis...


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"So this spring a different doctor took some of the fluid out of the watery blister, sorry it's gross I know, and said that it came back as Herpes Simplex. I was really taken aback by that one I tell ya!!!! Just on my back? That's the only place if you know what I mean."

hi, I work in a microbiology lab... am very familar with good ole Herpes simplex! But, I also have a rash that is very definitely NOT herpes simplex and is very suspicious for DH.

While the Herpes simplex virus is more commonly found in "certain" anatomical sites, lesions produced by the virus can occur all over the body. The question I would ask of you, (or of your doctor) is how was that fluid tested? If the fluid taken for the blister was submitted for viral culture, and the viral culture grew out Herpes Simplex virus, there is little doubt that you did have Herpes.

That being said..... there is the possibility of what is called super infection. Meaning,one problem on top of the other. So you have an itchy rash caused by one thing (DH / gluten intolerance) and you scratch it like mad, and in the process you inoculate the rash with something. Herpes virus is not uncommon, and it is possible you could carry it yourself (have you ever had cold sores?) Voila, your DH rash becomes infected with Herpes and your culture is positive....yet when you remove the cause for the initial rash - your sypmtoms are alleviated.

My own DH-like rash became superinfected with staph...once I stopped ingesting gluten, through the use of both topical antibiotic and hydrocortisone, the rash dissipated. Until I ingested gluten again.....


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