Doctor Visit Today - Totally Mortified (:

[JaneWhoLovesRain]

I can't believe it, he said I have scabies. I am mortified. I even had to go to a new pharmacy to fill my prescription. I could not face the pharmacists that I know. I can not tell anyone I know about this.

I don't understand how I got it, though. I do not share towels or linens or clothing with anyone, ever. I do not live or work in crowded conditions. I shower every day. Now I read it is often considered a sexually transmitted disease. Believe me, I am 100% sure that isn't how I got it.

So I asked him, where would I have gotten this and he said I could get it by shaking someone's hand. However I read on medicinenet the following "It is hard, if not impossible, to catch scabies by shaking hands, hanging your coat next to someone who has it, or even sharing bedclothes that had mites in them the night before." So which is true?

At first he tells me it is psoriasis. I said, but it itches terribly. So he takes a look at my hands, inspecting the webs of my fingers of course, and tells me it is mites (polite word for scabies). But, I tell him, I don't have anything in the webs of my fingers. Well, yours isn't following a typical pattern he said. And he added my itch is very characteristic of scabies because it wakes me in the night.

I asked if he thought it was a celiac rash and he said definitley not, he has seen that and it doesn't itch like scabies.

I do not know if it is worse to have scabies or worse to have dh. I am still not 100% convinced it is scabies. UGH!! totally mortified!

[itchy]

Join the crowd of those who have been told we have scabies.

Very embarrassing.

In hindsight, I think we all could have demanded that the physicans prove it by taking samples. Scabies is caused by tiny mites that can be seen under a microscope.

Once you've done the scabies treatment without any response, you will have more evidence that you actually have DH.

Actually it would be much preferable to have scabies, because it is curable in a few days or less, whereas DH will likely take quite a while to go away, ranging from a few weeks to several years, and you will be coeliac forever.

[mushroom]

Has he ever had DH? Does he KNOW how it itches??? And psoriasis itches terribly, too - I KNOW!! And it used to wake me in the night (heat makes it worse). Did he do a microscopic examination? This sounds more like a bit of diagnostic guesswork to me, rather than a true diagnosis. And unfortunately it doesn't even make any difference if this was a dermatologist Half of them can't even seem to be able to discriminate aczema from DH from psoriasis, any better than the rest of us. Keep looking. Of course you can see if what he prescribed helps (what did he prescribe?) But , number one, do not be mortified even if you do have it, and number two, you probably don't. That is the second time this week I have seen scabies mentioned on here, and very few people actually have it.

[Hopeful1950]

I'm with Itchy. I would be THRILLED to have scabies instead of DH. If you have scabies it will clear up quickly. I actually requested a RX for scabies medicine about 5 years ago to see if it would get rid of my itchy lesions...no luck

That doctor needs a good slap. My DH drives me crazy at night. I once took an Ambien to try to get some sleep and my husband found me sitting up in bed clawing myself because I was itching so bad. If I had a dollar for every sleepless night due to itching I'd have a big pile of money!

Try the medicine and see if you get lucky and have scabies. Just think, if you have scabies you won't have to worry about cross contamination. You'll be able to eat at any restaurant you want. You'll be able to travel carefree. Oh man I wish I had scabies instead of DH. See how your perspective can change?

Good luck and keep us posted. If you have DH, you'll find the support you need right here.

[zippitty5]

My dermatologist told me it could be Chelytiella (sp) mites which you can get from pets like dog or cat. However she barely looked at my skin so I don't know how she came to that conclusion. I still don't have a positive diagnosis.

[squirmingitch]

I'm with itchy, mushroom & hopeful. Try the medicine & see if it works. I also would rather it be scabies than dh myself. And I can NOT imagine anything itching worse than dh! How many nights sleep lost? Geez, I've taken so much valium it would put a horse to sleep & still was awake all night long ~~~ itching my brains out!

How many posts have I read on the dh forum of people being misdiagnosed with scabies? Just type scabies into the search box & see the endless # of threads & read them where probably 1/2 the people who have ever been on here were told they had scabies when they actually had dh.

[JaneWhoLovesRain]

I just did a search on scabies (on this site) and squirming you are right, there are endless posts of people who were told this is what they have.

I've looked at pictures of both and they look pretty darn similar. I can't tell the difference in most of them.

I think I was kind of hoping I would have dh as I have had so many unexplained problems in the past and I thought maybe this would give me some answers. My main problem has been with dizziness and vertigo. Since going gluten free two years ago this has somewhat abated but not 100%. Even if it is proven I do have scabies I will still stay gluten free. I can handle being gluten free much better than I can handle vertigo. But for all I know it could be a coincidence and being gluten-free has nothing to do with lessening of the vertigo attacks. BTW, getting a good diagnose as to what is causing vertigo is even worse than getting a diagnosis on skin rashes.

He prescribed perm something, two treatments a week apart, I don't have it in front of me and can't remember the full name. It's the standard treatment for scabies. Also gave me a cortisone shot and a mixture of cetaphil and some other cream that begins with t. And take a zyrtec every night.

He is wrong about the itch. From what you have written here and what I have read the dh itch is severe!!

[squirmingitch]

I live in the southern US & I have tromped all over the swamps & woods (read scrub) all my life. I like to tromp. Anyway, needless to say, I have had my share of chigger (red bugs) bites which itch like mad. IMHO I would take chigger bites any day over dh itching!

[dilettantesteph]

That sounds like when I was a teenager and I came home and told my parents that my stomach pain was PID according to the doctor. I didn't realize that it was sexually transmitted. Later I found out the test was negative and I got the IBS diagnosis.

[eatmeat4good]

I hope you post back if the scabies medicine works for you.

If it doesn't work, just go ahead and consider it DH so you can get better.

I was diagnosed with a bunch of different things from bacteria to fungus to herpetic whitlow.

None of it was true.

I realized it was DH from reading here.

It is gone now. One and a half years to heal, but it is finally gone.

[JaneWhoLovesRain]

Hey, it's me again. I applied the scabies cream (permethrin) Tuesday night. By Wednesday afternoon the rash was looking better, there was less inflammation and today, Thursday, it looks a little better again. But it is still way bad enough that I won't wear short sleeves. And while my back wasn't that badly affected before, now the bottom 6 inches of my spine are covered in spots.

I'm not sure of something and maybe someone here can help. The doctor gave me a cortisone shot, told me to take zyrtec at night and also prescribed a compound prescription ointment of triamcinalone and cetaphil. Even though the doctor said I had scabies I'm not 100% convinced yet. If in fact I do have DH would any of the above have helped it or would it have not affected it? In retrospect I wish I waited a day to try to cream, then I would know for sure.

Even though it looks better it still is itching, but not super crazy like before. Does zyrtec help a dh itch? I can't tell if I have burrows. There are a couple small slightly raised red streaks, but they could be scratch marks. Web pictures aren't helping any.

[eatmeat4good]

The Cetaphil lotion has gluten in it. If it is DH this will not be helping things.

There is only one kind of cetaphil product that does not have gluten and it is marked for sensitive skin. There is a Cetaphil thread on here somewhere.

I have sometimes thought that zyrtec helped with my DH, but that was before I knew what it was. It tends to flare and recede and re-flare...so it is very hard to know.

I have been given triamcinolone cream for DH outbreaks and if it helps...it is very minimal.

I have taken prednisone for outbreaks when we knew it was auto-immune but it wasn't responding to anything I was put on 5 mg. prednisone a day. This would be similar to your cortisone shot. I may have thought it helped some in the beginning but as I was still ingesting wheat at the time...it did not really help me and so I went off the prednisone.

Are you gluten free? I don't recall if you are eating gluten free during this scabies treatment?

[JaneWhoLovesRain]

Oh gosh, I didn't know cetaphil has gluten in it. It's the store brand they used, and anti-bacterial, but I doubt it is for sensitive skin. I'll search to find the cetaphil thread.

I have been gluten free for 2 years (for my undiagnosed vertigo/dizzy disorder). However, I am probably only 98% gluten-free. I'm sure there is cross contamination in some of my foods that are not labeled certifed gluten-free.

[squirmingitch]

I was misdiagnosed the first time I saw a doc about mine. He said it was hives induced by nerves/stress. He put me on Dexamethasone 4 mg. which is a very strong steroid. I could not tolerate it at that strength --- bouncing off the walls, speeding my brains out but it did make the dh lay down until the minute I stopped taking it, then back it came. I tried quartering the pills so I could tolerate them & taking 1/4 every other day or every third day & it would mostly keep the dh at bay. This was all before I knew it was dh. But the second I went off the steroid the dh was back with a vengeance.

[mushroom]

The cortisone will generally, on its own, calm down any kind of inflammation for a while. Just sayin'.

[Takala]

Don't be mortified.

You can still have both celiac, DH,and the scabies. If it is the scabies.

Animals, especially farm animals, dogs, and livestock and horses, can get this sort of thing or something else weird, all the time. We have to, especially in these warmer climates, worm and treat for fleas, ticks, & parasites prophylactically all the time. In the rainy season, sometimes after several weeks, some of the older horses will get a bit of fungus going, aka "rain rot," which I will have to get after with tea tree oil and iodine swabbed onto it. I wear disposable gloves while doing this. One horse spread it to me this past fall, a little patch of non itching round red fungus (some horses should not be let out while irrigation is running, because they will stand in it a lot, which does not help.) I was mildly annoyed with myself, but was able to get rid of it very quickly - once I remembered I also had to wash my baseball cap besides my jacket and clothes. He (the horse) was undergoing a stress period because he had picked up another bacterial infection, pigeon fever, and it took him about 2 months to get rid of that one. This consisted of a draining bump we had to clean up daily and let slowly heal, it's very contagious to other horses who haven't had it, yet. It is picked up from the ground where it lives all year but it becomes active only at certain times of the year, and is mostly spread by either flies or human error. (Most of our other horses had gone thru this about 6 years ago, he hadn't gotten it then, and this time he sailed thru it pretty easily with his good immune system. But this is when the separate fungus showed up in a patch on his shoulder, which also went away. )

Horses I have seen with mites don't always itch a whole lot, some of them sort of carry this stuff around on their tailbones and tail hairs if you look really closely. Ivermectin wormer gets rid of it for awhile, then it comes back. People don't get horse mites. Usually....

Horses can get these awful parasite infections from fly bites which make them itch so much they open wounds for other flies. Gaaaaah. Not fond of flies for my sensitive horses (2 have allergies). There is also a type of fly which lays eggs on their legs, which then hatch and burrow into their lips and then travel to the horse's gut. Gaaaaah.

Horses can also get infections from ticks. I loathe ticks. They can also give you diseases. Gah.

I have had chigger bites from time in the midwest - gaaaaaaah. Also have picked up some sort of hay mite, unknown.

There are so many "things" out there in nature that can afflict the living.

[squirmingitch]

Jane, when you mentioned the bottom 6 inches of your spine has the itchy rash, I meant to say that's pretty classic dh location. My gosh, if I had a nickle for every spot on the bottom 6 inches of my spine I would be wealthy!

And the Zyrtec can help with the itching as will Benadryl etc.... but antihistamines won't make dh go away. And shroom is right; the cortisone will make dh go away, or lessen it....temporarily.

Here's a thought for you to try. Go low iodine for a while & see what happens. Google thyca for the low iodine diet. Even if one is getting glutened but they go low iodine then the dh will resolve. Iodine is required to make the chemical reaction which makes the dh present itself. So you could do a test that way. You should start seeing dh stop itching & begin to heal in 2-3 days (at least for me). And you shouldn't have any new outbreaks while low iodine. Then when you add iodine back in the dh begins coming back.

[Ryniev]

Hey, it's me again. I applied the scabies cream (permethrin) Tuesday night. By Wednesday afternoon the rash was looking better, there was less inflammation and today, Thursday, it looks a little better again. But it is still way bad enough that I won't wear short sleeves. And while my back wasn't that badly affected before, now the bottom 6 inches of my spine are covered in spots.

I'm not sure of something and maybe someone here can help. The doctor gave me a cortisone shot, told me to take zyrtec at night and also prescribed a compound prescription ointment of triamcinalone and cetaphil. Even though the doctor said I had scabies I'm not 100% convinced yet. If in fact I do have DH would any of the above have helped it or would it have not affected it? In retrospect I wish I waited a day to try to cream, then I would know for sure.

Even though it looks better it still is itching, but not super crazy like before. Does zyrtec help a dh itch? I can't tell if I have burrows. There are a couple small slightly raised red streaks, but they could be scratch marks. Web pictures aren't helping any.

I take Zyrtec for allergies and it doesn't help with my rash. Neither does Allegra, Benydryl, prescription hydoyzine? or any other antihistimine for me.

I don't think it would be so bad to have scabies because it can go away with treatment pretty quick. I know because my daughter and I had it when she was little and it's NOT only sexually transmitted. Your doctor sounds like an ass, but I think most of them do.

We got it from my friends hamster and gerbil who we were pet sitting while they were out of town for several weeks. We applied ointment all over our body for about a week and it was gone. Ours never got too bad because we caught it early. Honestly, I hope it clears right up and you can go back to your regularly scheduled life! Dh is NOT something you want as an alternative.

[JaneWhoLovesRain]

Ugh, my rash is spreading. It's strange, the hip and neck (where it was really bad) are much better. My arms are worse, I keep getting new outbreaks near my knees, and it is creeping up my spine. The itching is still driving me crazy. And now I am starting to worry about getting secondary infections from all the scratching I am doing. Other than knees and elbows I don't have a rash in the usual scabies spots, i.e. hands, wrists, underarms, groin, breasts.

I was going to make an appointment to see the PA at my PCP's office (she used to work in a derm office) but Saturday I tried the iodine patch test. Oh dear, I now have a very obvious band-aid sized spot of brownish red on my forearm. It is sore and sensitive to touch but no blisters so does that rule dh out? Of course she will ask me what happened and I am too embarrassed to tell her.

Ryniev, glad to hear your scabies cleared up without a problem. I know it isn't always transmitted sexually, but I haven't even had casual contact with anyone, and no hamster contact either. I'm dumbfounded as to where I could have picked this up.

Squirming, interesting that you say the spine is a classic spot. I wasn't aware of that. Now most of my spine seems to be itching. I checked out the low iodine diet. I'm already on a very low sodium diet, as well as a low cholesterol diet and an anti-migraine diet. Not much left for me to eat anymore.

Jane

[squirmingitch]

I know, Jane, seems like the list of foods one CAN eat gets smaller & smaller. Hang in there though. Jane, do you really need a diagnosis? You sound pretty darn typical to me.

[JaneWhoLovesRain]

Yes, I really do need a diagnosis. I need closure and I need to know if I can ever eat gluten again. If I can't, so be it, I won't. But if gluten isn't my problem at all it sure would be nice to know and be able to have a peanut butter and jelly sandwich once again.

Jane

[itchy]

Curiously, I've never had a secondary infection at the site of a DH lesion. My theory is that the immune reaction is so hyped up at these spots that no infection can take hold. Just a theory.

Jane, don't assume right off that iodine will be a problem. It is for some, not others. I would find out for sure before you needlessly limit your diet.

[Di2011]

Curiously, I've never had a secondary infection at the site of a DH lesion. My theory is that the immune reaction is so hyped up at these spots that no infection can take hold. Just a theory.

I'm with you itchy. In 9 months I've never had an infection. And that 9months is a lot of scratching and head-to-toe for most of this time. I think our bodies (skin? something?) are fighting the gluten related anti-bodies so hard that everyelse gets bulldozed.

Mind you I keep very careful with keeping my nails short and clean them (plus hands etc) regularly (ie 5 times a day if they need it). In the shower is the best place to get them really clean.

[Ryniev]

I'm with you itchy. In 9 months I've never had an infection. And that 9months is a lot of scratching and head-to-toe for most of this time. I think our bodies (skin? something?) are fighting the gluten related anti-bodies so hard that everyelse gets bulldozed.

Mind you I keep very careful with keeping my nails short and clean them (plus hands etc) regularly (ie 5 times a day if they need it). In the shower is the best place to get them really clean.

Me three! I was worried about that. The other weird thing, is that I haven't had one attack of eczema since this started (I usually get it in the soft folds of my elbows, back of the knees and under my bottom. Those are about the only places I haven't had a rash since this all started back in July). I guess my body can only handle one rash at a time. Also, I usually get miserable prolonged sinus infections throughout the winter and not one! I work in an elementary school where everyone had everything from about September through now and nothing other than a bad cold that cleared up after about a week while everyone else's lingered and lingered.

Could be a happy coincidence?

[squirmingitch]

Me 4. Never had an infection in the dh. Also, curiously, I used to get a lot of keratoses but since the dh reared it's ugly head ---- no ketatosis.

I agree with the others; I think the immune system is attacking the skin so hard that no other skin problems can survive.