I hope this isn't too long, I'm new here. Thank you for your wonderful services!
Among a number of other long-term, chronic symptoms, I've been suffering for 12 years from what I was initially told was shingles. For the first 8 or so years it only occurred at the top of my left buttock. After 8 years it began to occur on either side always in my buttocks. It always seems to trigger sciatica, which has been so bad on occassion that I can't walk. It also presents with skin sensitivity in wierd locations down my legs, usually prior to the actual skin outbreak. As I've said, I've been living with these outbreaks for 12 years! Almost as soon as one starts to dry up, more blisters occur. It's been debilitating, but I've had to continue to work and carry on with my life which has been extremely painful and stressful!! I've recently come to suspect that I have Celiac's Disease. My granny was gluten intolerant and she died of stomach cancer. She also suffered from shingles. I've learned that a symptom of Celiac's is Dermetitis Herpetiformis. A chronic condition that won't stop until one gets the Celiac's under control. Most doctors have told me that shingles aren't chronic and that what I have is probably genital herpes, altho I've never had a genital outbreak and the two partners I've had since this condition started never developed any herpes symptoms. I tried to take Valtrex, but it made me queezy and I'm reluctant to take such a medicine. I was unknowingly exposed to toxic mold for many years prior to these outbreaks. They started at the same time I began to get chronic sinus infections which I had for 10 years until I moved out and the sinus infections stopped. The 'shingles' did not stop and I've developed many 'unusual' autoimmune symptoms over the last few years. I had taken antibiotics for 10 years and I'm working very hard to try to replenish the healthy flora and fix my digestive issues. My question is - does Dermititis Herpetiformis present with the skin sensitivity I mentioned, and could it cause sciatica if it occurs in or near the sciatic nerve so persistently?
Thank you for your time
Wow, just reading your post is the same as i get, i cant belief it , I have had graves disease for 12 years and that is the time my rash first developed, with the sciatic nerve pain down my leg, but the blisters come at the top of buttock, and i also get it on both sides,
I was always told it was shingles, but last year started to question why it keeps coming back, and my gp referred me to the infectious disease unit, and also dermatology, they seem to think it is herpes simplex 1, which they give me to take aciclovir 800mg a day, but i still get my rash, and are hoping to get a swab test, as im wondering what this is, as its so dibilitating, and it makes me weary, the sciatic pain ,and the rubbing off the blisters is very irritating.
I hope you dont mind me following this post, as it has a lot of interest to me, and maybe will both be able to find out .
Wishing you well.
Ps . after ive had my swab test i could let you know, and it may be a help in finding out what this is.
OMG - let's stay in touch, this is what I've been hoping to find on this website - someone with similar symptoms. I'm having some testing to try to dx these blisters soon, of course it's not as easy as we think. I'm having some blood tests first to see if the blisters are related to Celiac's Disease. My old primary care physician was the one who said it's shingles. But since I've had a few pcps since then, some of them have told me that it's herpes simplex 2 if it's below the waist, and they've told me that what that means is it's 'genital herpes'!! I've never had a genital outbreak in my life and I've never been willing to take the 'valtrex'. I tried it once and it made me feel queezy, so I stopped right away. I've been trying every natural approach with no relief. Recently I have reason to believe that it may be a complication of Celiac's. Certain 'environmental conditions' can trigger such a condition, as it's genetic. My granny had 'gluten intollerance', 'shingles' and she died of stomach cancer back in the 60s, before they knew what Celiac's was. I was (long-term and unknowingly) exposed to toxic mold in a rental apartment and started to develop the 'shingles' along with other autoimmune symptoms and constant sinus infections about 18 years after I moved in. It was an old apartment building and the basement was right below my apartment and there were gaps between the floor boads where I could see lights on om the basement at night- no insulation! Such long term exposure to mold spores floating around my apartment that whole time, I'm sure, was enough to weaken my immune system until I became too 'sensitive' to the mold spores. My allergist/accupuncturist says that I'm 'sensitve' to many molds. Long story short (I won't go into all the trouble I had with the landlord) the apartment finally started to smell of the mold and I began to figure out what may have brought about all of my 'unusual' symptoms. I moved out in 2007, and 1 1/2 months later, the sinus infections just stopped and my doctor said, "Wow, you were right all along!" (about my suspicion about the mold) I had suffered with them for 10 years! (The sinus infections stopped, but the 'shingles' just don't quit!!!) 10 years of antibiotic use which damaged my digestive tract (along with whatever else that involves!), but because no doctor wants to deal with the mycotoxins that are in my body, I have to just wait until opportunistic systemic illness gets so bad that someone will finally find what's wrong with me. I believe all of my symptoms can be traced back to the mold exposure. Who knows? Without the money to see an 'environmental' doctor and do all of the really expensive blood tests, I don't know if I'll ever know for sure what brought this all on. I hope this isn't too long and I hope it doesn't just sound 'crazy'. I must say, I feel like I'm going crazy sometimes!!! This is such a longstanding problem, and sometimes I feel like I'm just 'rotting' away. Frustration and depression takes over sometimes... I hope we can keep in touch with our diagnosis. I hope we can be of help to each other. Feel free to tell me more about your story if you feel like it. Maybe you could tell me how you got the dx of Graves Disease and what is it?
Thanx for getting in touch with me!
Hi, Graves disease is an auto-immune, thyroid illness, which causes the thyroid to swell and cause all hyper body functions, i have just had my second surgery, but still feel c**p.
My rash started in the same year 1998.I was told for years its shingles, but when they started to come go ,and come again in a short space off time, i thought this is not right,
My doctor, sent me to the infectious disease unit, and even though my rash comes below the waist they said it was herpes simplex 1.
I was totally shocked as i thought i havent been promiscuous, and my partner who i had been with for over 6 years had never had this rash .
I was very puzzled, as surely if it was herpes, we should all have it, as my rash is very active.
So i was given aciclovir 800 mg which i take long term, but my rash keeps coming back.
They jusat dont seem to care and fob you off with all sorts off junk, they even made me have an HIV test and syphillis. whichy all came back negative.
I have asked for a swab test as i would love to get to the bottom of this.
As i even paid privately for a blood test to see if i had ,had herpes1 and 2. and it came back negative.
But when i tell them at the hospital they just fob me off saying take the aciclovir, so now next time the rash comes im getting it swabbed,
I have it now but the blisters have turned to scabs, i was to late.
I have even paid foe an IGE blood test which came back very high, and its an immune marker for allergies.
But my GP did nothing.
Im at my wits end with this .sorry to rant. I just wish i could find out prop[er.
I also get stomach problems with intermittent diarrhoea. Im just trying to find the connection.
My whole body system feels whacked with it.
Do you ever get itchy skin? as i do sometimes.
They even give me amitriptyline for the nerve pain. which does help a little.
What is caelic disease, and how do you get tested for it, as im in the UK.
and our NHS service is rubbish.
Thank you for taking your time replying, im very interested and i hope we both can find out what this is, just so we can get on the road to recovery.
I was shocked you have sinus problems as i get nasal drip very frequently, but i think its my thyroid? what causes that.
Keep intouch please.
Take care . hope to hear off you soon
this absolutely is not shingles going on I can assure you!!! Shingles doesn't go on constantly like this and it rarely reoccurs.
At this point, err on the side of caution and get a type specific herpes igg blood test just to see what it shows. Odds are it will show hsv1+ whether you can recall a history of cold sores or not. Most adults do have hsv1 orally. If it's hsv2+, post your results here so that we can see if you need additional confirmatory testing to rule out a false positive or not.
Your symptoms being almost constant doesn't sound like a herpes issue in general. Definitely follow up on this with a dermatologist. If you have a family history of gluten intolerance, avoid gluten too while waiting for a proper work up with either the dermatologist and/or a gastroenterologist. Look up websites on celiacs so that you can see what non-food products you also have to avoid like certain lipsticks and such too ( yeah, who'd think of things like that? )
Good luck - hopefully you FINALLY get some better answers and relief from your symptoms!
I thought I sent a response to your last communication. However, it's entirely possible that I didn't actually send it. My story just goes on and on once I start telling it, and I can't remember what I've said and haven't said. I'm having testing for Celiac's Disease - my granny had gluten intollerance and 'shingles' and she died of stomach cancer. Anyway, these blisters could be something called Dermititis Herpetiforms which is a condtion that occurs with Celiac's. Very similar to herpes. Anyway I did have a blood test which came up positive for HS2 back in 2003, but I just can't believe that I have 'genital herpes' when I've never had a genital outbreak. You said something about posting my hs2 results to rule out a false positive. How do you do that? I'd love to learn more about that.
Just call and get your results from your 2003 test and post them here - ie hsv1 igg 4.5 and hsv2 igg 6.5 or whatever they are. then I can see if you need more testing done or not. also if you get new symptoms, be seen within 48 hours of their appearance for a lesion culture and typing - preferably pcr swabbed. Even if you do have hsv2,doesn't mean all your symtoms are due to hsv2.
You have history of allergies and similar issues so certainly the dermatology work up would be worthwhile. also if you suspect autoimmune issues, a rheumatology work up would also be worthwhile if you haven't had one already.
Hi Grace - my HSV2 IGG herpeselect AB = >5.00. That was 11/04. It said, "The test should be repeated 4 - 6 weeks when negative or equivocal results are obtained in suspected early herpes simplex disease." I never had it redone. I just assumed that the 'shingles' dx I had gotten from my pcp was correct and that it must show up in bloodwork as HS2. I just assumed all of these years (since 1998) when they started that it was shingles. I don't think that anymore so now I'm finally getting really agressive about figuring all of this out. Right now I'm waiting to have some blood tests done to see if it may be the Celiac's Disease/Dermititis Herpetiformis. I can't have that testing done for another week or so due to the fact that I was doing a gluten free diet for a couple of months and I have to be eating gluten to get a proper dx. I'm going to see a neurologist and my gastro wants me to see a rheumatologist for possible 'scleroderma'. I have to see my pcp on 1/14/10 to get that referral. I'm also having a capsule endoscopy on 1/12/10. I have eye problems (lots!) that I believe are autoimmune. If that's true, rheumotologist will figure it out. If the Celiac's/dermititis herpetiformis theory turns out to be a wrong path, I'll see my dermatologist and start having skin allergy testing and have the 'shingles' swabbed or cultured. Are they two different processes? Which one should I request? Thanks so much for your help!!
You're the second person who told me they have graves disease and similar skin condition. It fascinates me that you too were exposed to toxic mold. Have you had the skin condition dx'd? I don't know how to post to people in a private way on this site. I'm just learning about all of this 'blogging' stuff. Is there a way to communicate privately? I'd really like to hear about your mold exposure and share what I've learned about it all. I look forward to hearing from you!
Oh it sounds like you are well on your way to too many copays but finally all the consults you really needed to have done years ago! Hopefully you finally get some answers to everything now :)
Next time you have symptoms, be seen. They can swab them for herpes or if they feel that they don't look like herpes, they can do a simple skin biopsy to see if that shows anything.
I know you didn't like valtrex but it might be worth giving acyclovir a try. Try 400mg 2x/day for a few months and see if your symptoms get better. If it's all herpes going on, it should go down to a dull roar. Expect some headaches and maybe some nausea for the first week or two but then that should go away. Try taking your pills with a big meal too even if that means taking 1 after lunch and 1 a few hours after dinner and see if you tolerate it better that way. Not as much active medication gets absorbed with acyclovir as with the higher doses of ob therapy valtrex so you might do much better on that. Your hsv2 igg of 5 means it's likely you really do have hsv2 but as I said, it's doubtful this is all genital herpes going on. Suppressive therapy would take the hsv2 part out of this for the most part and make it easier to figure out what is herpes and what isn't going on.
keep us updated as you get more answers :) I think plenty of people in the future would find your post/experiences very helpful :)
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