After several years of suffering massive blisters on my hands, legs, and face, along with severe breathing problems and terrible coughing, I helped a totally awesome allergist discover what was wrong with me. But I had to see three clueless allergists before I found that one totally awesome one. I also had to spend thousands of dollars visiting three different ENT docs, along with suffering through two unnecessary nose surgeries. And, I completely wasted my time visiting two internal medicine doctors, and a dermatologist who misdiagnosed me. I also spent a few hours in the ER almost every month for several years. No one really helped me until I decided to keep a journal of everything I put in or on my body every day for about a month. Once I narrowed it down to a few possibilities, I took my results to an allergist I heard about at a research institute. He tested me for the chemicals he had tests for, and he confirmed that I was allergic to one of them - phenoxyethanol. He took pictures of my hands and even wrote an article about the potential dangers of phenoxyethanol, as my reaction was extreme, and he had other doctors examine my reaction to the chemical so they could share the information with others. My body still has scars from the damage the blisters caused to my skin. I can only imagine what it might have done to me internally, but at least I survived. I now read every label on everything I buy, and I always remind my family doctor that if it has phenoxyethanol in it, I cannot get near it. The scary thing about phenoxyethanol is that it is in so many beauty products, and it’s even in medicine, and certain vaccines. It’s used as a preservative, and it’s banned in the UK, and not the US.
I hate that you had to spend thousands of dollars on a system that was failing you. That really sucks. By the time you find a doctor who can help, it feels as though you've found your savior! I'm still so grateful to my doctors who were able to figure it out. Luckily I had a good insurance plan at the time. I'm allergic to common chemicals as well and you're right - the reality of it is very scary when your allergen is in SO many things... especially in the medical environment! Most people can rely on whatever the doctors say, but when you have an allergy like this you really have to be your own advocate. That journal idea is SUCH a good one. If anybody else out there has mystery allergens and can't afford to go to the doctor, definitely try the journal for a month!