Unbelievably Rare Allergy

I don't want to bore you with details, but I did want to share how important it is to know your facts when you see your doctor for anything.

In this day and age it seems we have to be the ones leading and guiding our doctors in a lot of cases. It's not always true, as in Sam's case where his amazing doctor was active in seeking the cause of his febrile seizures, but in my case it is true.

Do you remember when I broke out into a rash, got a high fever and high blood pressure last year? Probably not, but I do.

I actually switched doctors, because my doctor thought I had Scarlet Fever even though I clearly did not. He treated me with MORE antibiotics, despite his initial thinking that I was actually allergic to antibiotics. I went to pick Carolina up in China with my body covered in this hot itchy rash, a high fever and a heart rate that was over 120bpm resting.

When I returned, after having been on a tapered dose of steroids for over six weeks AND going to a Chinese hospital every day for a week to get steroid shots (I seriously need to get checked for HIV at this point), I switched doctors.

I challenged my new doctor to figure out what was going on, but at this point I didn't have any symptoms. She ran all kinds of tests, but everything came back negative. She really rose to the challenge though, and believed everything I told her about my condition.

Then, in early January this year I got another sinus infection. I went to see her and she said NOT to take any antibiotics (she is of the mindset that antibiotics aren't always the cure, and for that, I salute her). She told me to take Mucinex-D and see how that made me feel.

By that evening, I was feverish and had turned red all over again. My skin was hot and itchy and I was panicking. I never felt like I couldn't breathe, though my lips did get really big, so I stayed away from my epi pen. I really struggled with whether or not to go to the ER, but chose to go to bed instead (Bill watched me like a hawk all night long, even waking me up every couple hours to take Benadryl).

My doctor sent me to an allergist. I started looking through my medicines to see what else I had been prescribed during those other two sinus infections and it was other medications with a D in it. I.e. - a decongestant. THIS time I did not take an antibiotic, but only a decongestant (like Sudafed).

I presented my thoughts to the allergist and he quickly waved them off. He said it was impossible because the molecules were too small in Sudafed. Instead, he had me tested for normal allergies.

It came back that I am highly allergic to milk and mildly allergic to soy, corn, eggs, trout, peanuts, mold and dog.

I didn't believe it.

After calling back three times and not getting the answers I demanded, I made an appointment to see the allergist again yesterday.

I insisted that I am allergic to Sudafed. He insisted that it is impossible. I insisted some more. After 40 minutes of insisting, he finally looked it up. (Seriously? How easy would that have been to begin with?)

What he learned shocked him. Thank goodness he is willing to learn something new though.

I have a very rare allergy to Sudafed that affects the central nervous system. It actually mimicks Toxic Shock Syndrome. Check this out. Every one of her symptoms were my symptoms.

HA!

The moral of this story is: trust your instincts!