Stevens-Johnson Syndrome

Resolved question:
(Stevens-Johnson Syndrome Case - Get you popcorn, this is a long one)

Quick History

About 5 years ago, at age 17, I was prescribed Bactrim by my dermatologist to treat acne. About 3 weeks later, I began having flu like symptoms: loss of appetite and fever. Then over the next week my condition rapidly digressed. I began breaking out with hives and had a severe migraine. I went to the ER and was subsequently admitted to the hospital and diagnosed with Stevens-Johnson Syndrome. It took a couple of days to reach this conclusion because no one could believe that it could take as long as 4 weeks to see this kind of reaction. By this point my entire body was covered in the "classic" red, itchy, bumps and pustules seen in this disorder. My eyes were jaundiced. My liver and kidney values were on the verge of organ failure, and I had fluid in my lungs. I was treated with high dose corticosteroids, IV Benadryl, and IVIG infusions.

Fortunately, I sustained no dermal damage; internally I am not so sure. I believe a have chronic lingering effects of this disease.

Since then I have never felt the same. It began about a year later when my libido started to decline. I followed up with an endocrinologist who ran a full work-up. My testosterone/GH/estrogen and other sexual hormones were all normal. Cortisol and prolactin came back high, which led to an MRI and the subsequent discovery of a 3mm-5mm pituitary adenoma. Upon follow up blood work, he determined that the adenoma was benign. This didn't sit well with me, but I accepted it.

2 years later, at age 19, libido had not improved, morning erections had ceased and additional symptoms began to arise.

-Severe short term memory loss - and my emotions were leveling out - i.e. flat.
-Extreme brain fog
-Could not sleep longer than 6-7 hours; I began to be awoken abruptly every morning at the same time, irrelevant of the time I went to bed.
-Testicles/penis felt cold and smaller
-Coldness - especially in extremities
-Numbness in right big-toe
-Acute alopecia. I literally woke up one day and my hair started falling out.
-Itchy scalp
-Horizontal Beau Lines on nails
-Dehydrated facial skin
-Low blood pressure
-Eye floaters
-Hyperhidrosis - Underarms, hands, feet
-Enlarged left submandibular gland, - 2.1cm confirmed with ultrasound
-Edema - particularly in the face
-Low blood pressure
-Low WBC

I also began to break out with "Steven's-Johnson" Type rashes whenever I was allergic to something. Some of the correlations between allergy and rash are when consuming:

Amoxicillin
Eggs
Walnuts
Pecans
Peanut Butter
Coconut
Vitamin B12

Here is my (completely non academic) hypothesis. The Steven's-Johnson Syndrome reaction is still alive and active inside my body and I believe it is slowly attacking my organ's leading to the symptoms I am experiencing now.

I believe additional treatment with IVIG is my last hope, and may alleviate my symptoms. No doctor has been able to help me so I have been doing most of my research and diagnosis on my own.

Any opinion on what is going on with me and how to treat it would be very much appreciated. I live in New York City, and I can't even find a Dr. who can help me. Could you also please suggest the type of specialist I should be seeing.

Thank you so much for your time!

Submitted: 4 Days
Category: Allergy and Immunologist

Stevens-Johnson Syndrome

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