Tuesday, December 6, 2016

2016 (part2)

I had my first round of testing with my awesome new doctor in August. On Monday August 29th I woke up and my hair was wet, the sores on my scalp were oozing and my head was really sore. I was nervous about them being infected, around lunch time the lymph nodes behind my ears got so swollen that you could see them and not have to feel for them. Both the sores and the nodes got progressively worse as the day went on. I called my doctor today and they asked me to come in, when I did he saw how flared up I was and decided he needed to start the patch testing right away and not wait until the following week. He said if I stayed flared up like this much longer I was going to eventually become super sick. He was particularly concerned about several quarter-sized sores on my arms, and back, and the large sores all over my scalp. Since I was flared up so badly there was limited space for the patches- he couldn't place them anywhere that had any bumps or rash on it, so they were only able to test for 60 different things as opposed to the 110 they had planned on.

The test he gave me is called a patch test, and tests for delayed reaction contact dermatitis. So, for example, if I was allergic to wool (which I am) and wore a wool sweater, or brushed up on one in a store while shopping then a few days later I might flare up- however at that point if I didn't know I was allergic to wool, I would have no way of figuring out what had cause the rash. The way the test works is several patches were placed on my back- each patch with 10 different allergens on it. The patches are outlined with markers and notations are made on my back and the patches are covered in lots of tape and stay on for 3 days...during that time I can't bathe, or sweat, or risk getting my back wet in any way. After the 3 days the patches are removed and initial results are looked for, but that isn't the end. Once the patches are removed I have to continue to stay dry and go back every other day for readings until the doctor decides he has all the information he needs. Since he is looking for delayed reactions typically that takes a full 7 days. It's miserable and uncomfortable and kind of just sucks. The first round of testing was for 36 different allergens. After that week of testing he was able to confirm that I was severely allergic to Nickel, and moderately allergic to Lanolin, Cocamidoproyl Betaine (the chemical that makes soap foam), and all fragrances. The nickel allergy was so severe that it caused me to develop Systemic Nickel Allergy Syndrome. Essentially it caused my body to go into shock, and my system to be so whacked out that all of my other minor allergies were compounding with the nickel allergy and wreaking havoc/unleashing rashy hell on my body. 






My instructions based on these results were to stop using everything that had the 4 allergens in it. This got complicated because it meant all soaps, detergents, shampoos, etc were off-limits. The lanolin allergy also severely limited the options for cosmetics, toiletries, and lip balms. Luckily I was given access to a database in which my doctor input all of my allergies and it provided me with a list of all products currently on the market that were safe for me to use. The Systemic Nickel Allergy syndrome was so bad that it meant not just staying away from nickel jewelry and metal things, but also beginning a low-nickel diet. Oy vey, this diet is awful. Nickel is a naturally occuring element in soil and believe it or not has a very strong presence in a lot of food. The major culprits are chocolate, nuts, seeds, oats, whole grain, whole wheat, soy, and leafy greens...this means all of those had to be cut from my diet. It also was a huge clue as to why I flared up so badly when I was eating gluten free, because I was consuming a lot of chocolate, peanut butter, oats, etc. At this point I was to make these lifestyle changes and hope to begin healing.

2 comments:

  1. You poor poor thing!!! I had no idea you were going through this :( let's talk tomorrow if you are available!

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  2. Oh wow Layne!!! That is terrifying!!! I have never heard of a Nicole allergy that severe before. :(

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