I debated whether or not to post this on my blog but decided to do it in case someone might have some answers or maybe it will help others and venting on here might make me feel better. I'll also use it to keep track of my progress and will be updating it.
This all started in September of 2009. The symptoms seemed to start shortly after Mark and I epoxied my garage floor. I got a bit of it on my arms and face but didn't think too much of it. After wiping it off I was left with a small red mark where the epoxy was and it seemed to disappear after a few hours. A few days later I noticed a dry scaly spot, kinda like a sun burn peeling, on my right cheek around where the epoxy was, but my arms seemed fine. I put moisturizer on a couple times a day but it wasn't going away.
After a couple of months I decided I should probably see a dermatologist to get a prescription for it so I go to yelp and search for the best rated dermatologist in the area and went to see them. Saw them a few times and tried a few different prescriptions but nothing was working. Some of them would get rid of it but it would just come back as soon as I stopped using them. My last visit to them I found out the person I normally see no longer worked there and she left to start her own business so I saw someone else and they referred me to another dermatologist that specializes in contact dermatology.
So off I go to see the new dermatologist at the Polyclinic which is not convenient for me to get to and paying for parking sucked. They gave me an allergy patch test on about 30 different chemicals which was not a fun thing to do. I had to spend a week with patches and tape all over my back. This was in November, 2010. After getting the patches taken off I had to come back in a few days later to see if there was any reactions. However on the day of my appointment it decided to snow and I couldn't make my appointment and ended up taking a picture of my back myself and sending it to the doc. I waited patiently for weeks for a phone call with the results and never got one. I ended up having to call them twice before I got an answer saying I'm not allergic to anything. I thought for sure I would have come up allergic to epoxy. In the photos I noticed two light spots that I thought might be possible allergies but they said I had none. I am not convinced.
After the failed allergy test I decided I was tired of trying different prescriptions and wanted answers so I got a biopsy done. The results were kinda scary actually. They showed signs of Discoid Lupus (DLE) which the doc said would explain why the other medications weren't working. I did a lot of Googling on it and it didn't sound too good but I was glad to finally have some answers. So I got a new prescription for Protopic that is apparently stronger than the previous medications I used and I used it for an entire month. After a couple of days of stopping I saw the doc on 4/18 and things seemed to clear up. I also had a blood test done during this visit to confirm if Lupus was the culprit. They said it's only a 10-15% chance it would come out positive. I got a call back with the results that Friday and it ended up being negative so apparently I don't have lupus. I guess that's good news. The symptoms still hadn't returned so things were still looking good for Protopic.
I was just thinking I was in the clear because previous medications cleared it up and after a few days of not using them it came right back. It had been 6 days and still no symptoms. Day 7 my face started itching and getting red. For the first time, I even started seeing some drying/flaking skin on my left cheek. Ugh! The itching was probably the worst it's been and had never really had a problem with itching before, it was just the dry/scaliness I was dealing with so things have not improved and have only gotten worse. I haven't even been able to use foundation or any makeup on my right side since this started. The affected area has grown significantly over time as well. I've also started getting scaliness on my eye lid and just under my eye.
I was so bummed it had returned. I started using the Protopic again just to get the itching to stop. I called my dermatologist first thing Monday morning and had to leave a message, hoping for a new prescription. I don't think he has ever actually called me himself. He always has his assistant call me. She called me back late Monday afternoon just before I was leaving work and said the doc told me to use the Protopic again to clear it up, as needed. That's it? No new prescription? no additional appointments? I tried to explain to her that I used the stuff for a month and it's not fixing it up and that I was hoping to get a different prescription that might work. So she said she would have to talk to the doc and call me back. I get a call back while in my vanpool heading home and she basically said the same thing, to keep taking the Protopic as needed and to start using it on the other side of my cheek since I started having symptoms there. She said there wasn't anything stronger that they could prescribe. Really? Is stronger what I asked for? It's obvious this stuff isn't working if it's starting to spread to the other side of my face while using it you think?
Besides the Protopic I've also tried Mometasone Furoate Cream, Tetrix/CeraVe, Elidel, and Hydrocortisone Butyrate. There's got to be something out there that will get rid of this permanently. I can't keep taking Protopic. It's not meant for long term use from what I have read. So this guy basically gave up on finding a solution to my problem.
A friend suggested I search for an environmental illness doctor so I Googled for one of those and found someone near where I work so I might give them a call to see if they have any suggestions. I haven't been too happy with my dermatologist's recommendations or their customer service or the inconvenience of going to appointments there. It would be nice to have a doc closer to work.
My search for an environmental illness doctor closer to work came up with Dr. Buscher in Redmond which is a mere mile from where I work. How convenient!
5/5/11 - My first appointment with Dr. Buscher lasted a little over an hour. The only thing with this place is they do not submit any insurance paperwork. That is something I will have to take care of myself. I'm hoping insurance will cover it. I sent in my first claim form last week so we'll see what happens. He asked lots of questions, lots more than the dermatologist. He decided the next step would be for some additional allergy testing for foods, pollen and molds. At least I was able to do that from home and mail in the specimen. I didn't think I was allergic to anything like that but made appointments to take the tests anyway to rule that out. He also wanted me to do a GI test which I won't go into detail on what that involves. He noticed a coating on my tongue and thought there may be issues there. So I sent that stuff in on Monday. Not sure how long it will take to get the results back from that.
5/16/11 - I went in for the first half of my food allergy tests. The results of those tests were pretty surprising to me and a little surprising to the person doing them too. I ended up showing allergic reactions to soy, corn, dairy and egg but negative to wheat. She found it odd that wheat was not an issue as that one seems more common than the others. Of the allergies I have soy was the most mild. I was thinking I would have to stop eating all of that stuff but these appear to be cyclical allergies and not fixed allergies. I didn't know the difference so have been doing a lot of reading on food allergies. Fixed allergies you basically have for life and can never eat them. Cyclical allergies you only have to stop eating for a minimum of 3 weeks and then after that time reintroduce them into your diet and check for reactions. If no reaction you can continue to eat them but if there is you should stop eating it for 3 months or so and then try again and just keep doing that until you are able to eat them again. There should be a time where you may be able to eat them without side effects.
This place is strictly a fragrance free place you can't wear any fragrance into the office at all that includes using fragrance free everything; hair products, deodorant, clothing detergent, etc. I mentioned some of my history to the food tester and also mentioned that I made soaps/lotions with fragrances and have been doing that since the summer of 2006. She seemed to think it was likely that could be the cause of my issues as I used to keep all my fragrances in the living room. I've since moved them all in the garage and threw out most of my fragrance oils and have only kept the essential oils. It's possible the cause of the dermatitis started with the epoxy contact and either the fragrances and/or food allergies have prolonged it and are not allowing it to heal. Or the continued contact with the fragrances may also have caused the food allergies. They said I neutralize quickly between injections of food they tested which I guess is a sign that I haven't had the allergies for very long and is also a good sign.
They didn't do a great job of explaining how they were going to do the food testing but after the first 4 I pretty much figured it out. They don't tell you which foods they are testing you on till after the test is done. They use glycerine based injections and first test is a baseline to see what kind of reaction I have to just glycerine. Then they inject the food into the skin and wait 10 minutes and record the result of the reaction then I get an injection of something that neutralizes it to bring down the reaction wait 10 minutes and then move on two the next food. So I did 5 foods Monday morning and am supposed to do 4 more next Monday but am not sure which ones they will be testing. yeast for sure but not sure about the others. I was going to give them a call to ask since I am supposed to eat those foods before the test.
Also during the testing she read off a list of possible side affects from food allergies. I was very surprised by the long list of possible symptoms. I had no idea there were so many. When I think of food allergy symptoms I always think of hives, puffy face, itchy/tight throat which are symptoms of fixed allergies but not really for cyclic allergies. I do actually get a tight throat when I sometimes eat certain foods. Something in some baked goods and pancakes seem to cause that but I haven't figured out what it is. There is also certain Italian dishes that make me nauseous, usually Olive Garden does that to me so I try to avoid that place. I'm not sure what it is, maybe a certain type of cheese. Cyclic allergies however are more delayed and not usually an instant reaction. It could take up to 72 hours for a reaction. But those symptoms could range from depression, asthma, gas, migraines, memory impairment, the list goes on and on.
5/17/11 - Found out I have what is called Catathrenia. It's a sleep disorder I've suffered with since high school. It doesn't really have any affect on me but does affect the sleep of anyone that sleeps near me. I don't even realize I'm doing it. I've been to sleep doctors and they just say I have mild sleep apnea and prescribed a CPAP but I didn't find that it really helped much so I didn't use it for much more than a year. I had Googled before about my sleep moaning problems but never really came up with much info on it. I moan like a motorcycle for an extended period of time (15-20 seconds) during each exhale and I do this every night, actually I think it usually occurs early morning. It turns out it is a pretty rare disorder but probably more people out there have it than they realized. It wasn't even given a name until 1983. I just happened to come across on article on CNN last night titled "Get Some Sleep: Groaning at night, and not the sexy kind". It caught my attention right away and so I read on and found it described my symptoms to the T. It is so rare apparently my sleep doctor had never heard of it. Unfortunately there's not really any known cures or treatment for it yet but I have found there are support groups for it. It helps to know I'm not the only one suffering from this strange disorder. It's nothing new for me as I've been dealing with it for the past 20 years.
I've created a new blog post with more details on my allergy test results.