This is the story of how I contracted a condition outside of the knowledge of modern medicine, and how I came to beat it.

It Starts

Three years ago, on December 16th, I began getting very itchy. I was fine during the day, but at night the itch would be out in force. I ignored it at first and thought perhaps it was dry skin from the cold. There was nothing visibly wrong with my skin except maybe some skin colored bumps.

In January, I finally decided I needed to see a dermatologist. The itch had gotten much MUCH worse. I never slept an entire night through and was bleeding from where I had been scratching so much. Thankfully, there was no itch during the day time so I was mostly able to continue leading my life as normal. The dermatologist gave me some Desoximetasone and sent me on my way. This did not help. I went to another dermatologist who gave me Triamcinolone. This did not help either. One more dermatologist gave me Halcinonide - but it still didn't work.

Of course at this point, I had changed everything I could think of in my life: soaps, shampoos, detergents. More sun, less sun. Changed mattress. Shitloads of lotions, Oatmeal baths, extra vitamins, more and less showers, ice packs, humidity, gluten-free diet, consuming extra water. I even tried crushing up antibiotics and mixing them with cream and rubbing them on my skin in case it was somehow bacterial. None of it worked.

Getting Serious

Then I decided I needed to start seeing more than just run-of-the-mill dermatologists. Its approximately March/April now and the itch, which started on my legs, has spread all over my body and is now starting to get on my face. I hadn't had proper sleep in months, I was covered in bloody red patches from itching, and by the end of the year I will have gained 50 lbs.

So I went to a senior dermatologist at Duke. She cut off part of my elbow skin in two patches (still have scars) to analyze my skin. Unfortunately, she didn't know what was happening and suggested perhaps trying UV treatment. In the mean time she recommended I see one of the oldest/smartest dermatologists at Duke. So I did, and he didn't know either.

At this point, I have had A TON of labs and tests done on me. Blood test, Chest X Ray, Urine test, blood test, hepatitis, thyroid, another blood test, sedimentation rate, immunofluoresence, and the tissue transglutiminase I mentioned above. Everything came back perfectly fine.

I had so many tests done on me that I began carrying a book with me to each new doctors appointment, with my results. The book contained tests, medications, brief medical history, things I had tried, and a sample log of what I had eaten for a week. The book is 37 pages long.

The Big Guns

In the next segment of this story, two big things happen: 1) I am given medicine that does not cure me, but, allows me to sleep. 2) I go to see the best itch doctor in the world.

Its June now, so 6 months after this began. My parents force me to go see their family doctor and, otherwise hopeless, I give it a shot. He prescribes me a medicine called Doxepin. It makes me super drowsy, but at last I can sleep!!! It does not cure the itch, however.

Then, I go to see who NPR bills as "The Godfather of Itch". He founded the International Forum for the Study of Itch. For god's sakes the man even has itch in his name!!! Its none other than Dr. Gil Yosipovitch. And what does he tell me? Take some remeron and come see me in 8 months. Remeron is in a similar class as Doxepin, its not exactly the same thing...but kinda. And EIGHT MONTHS!? Is this guy crazy?

Surrender

At this point, I have climbed the medical mountain. I have taken advantage of the best that modern medicine has to offer, and my case is still not solved. What shocked me most is that I was at the end of the road. Like, aren't there people waiting to solve strange cases and make a name for themselves? Shouldn't I have been given the name of a research laboratory and research doctors there would take over? Nope.

So, I submitted to the fact that I could never be what I wanted to be in life. No one can achieve things in life if they're halfway asleep and bleeding all the time. I was 24. I was 50 lbs heavier than when I started. I lost my SO over this, it was awful.

I came to understand something most people never will about the medical system: doctors just follow a set of rules, and when their rules don't work...they don't know what to do. Its pretty amazing, really. Man, I was so angry and frustrated and so sleepy all the time.

A misleading glimmer of hope

After 12 months had gone by, with me itching the entire time, I wound up getting a tonsillectomy for unrelated reasons. Now, at this point there were 3 hypothesis I was considering: 1) The itch was caused by some sort of mental disturbance, and the entire thing has been something manufactured by my brain / no physical cause. 2) The itch was caused by my nasty tonsils - who knows why. Maybe a histamine reaction, maybe they are pumping tons of bacteria into my blood stream (and for some reason my white blood cell count is perfect), or maybe its some other tonsil-related cause. 3) The itch was caused by something on my skin that just doesn't show up in any tests.

After I came out of my surgery I noticed my skin seemed 'calm', not sort of 'ringing' like it felt like for over a year. The amazing thing is: by the end of the week, my itch was GONE. 100% done. Gone. It was a miracle to me.

So was it the tonsils? Must be, right!? But all my blood numbers had looked perfectly normal...so how had the tonsils been causing this?

11 Months of Freedom

I was so happy to be free of this. I ended up losing 73 lbs (total net loss, woo!)...but then Thanksgiving came. Shortly after I went home for Thanksgiving, I started getting itchy again. I. Freaked. Out. I could not do this again. I paid for a fancy annual membership doctor's office and demanded they give me every single thing they had.

I had pinned the itching down to almost precisely when I walked in my mother's door...so I was sure it was either: 1) An allergy or 2) a bug However, when the itch followed me back to San Francisco, I knew an allergy would've worn off. Bug it was.

In the end, I had creams to cover my entire body with. I'm 6'3", doctors don't think of surface area when they prescribe these creams. Cream didn't work. I went back, and this time I got pills, specifically, I got ivermectin. I also went bananas washing everything every single day - sheets, clothes, towels, everything. And it worked. The ivermectin and washing high heat drying made the itch go away. Interesting, but, not conclusive.

Okay, so it worked one time and it looks like its bugs and I can beat it in about a week. However, I'm a scientist. Working one time doesn't count as proof. Luckily for me, Christmas was just around the corner...and I could infect myself again.

And I did. I infected myself again so that I could prove that ivermectin and an intense cleaning ritual would solve this. It did solve it. I had figured out what The Godfather of Itch could not.

Aftermath

In the subsequent months, I received a package from my mom and got the itch again. Ivermectin cured it again, thankfully, but it goes to show how insanely infectious these things are. This past Thanksgiving I told my mom I couldn't go to her house but would go to dinner with her - unfortunately just sitting at a restaurant table with her, I got it again.

I tried to head it off early this time and went to Urgent Care. The first doctor refused to prescribe me ivermectin, so I went to a second. The second doctor refused as well, so I abruptly left the room while he was in the middle of his sentence. Its so frustrating to have to deal with outdated rules. I eventually got a prescription. Unfortunately I will not be home to see my mom for Christmas. I think it is her cat that is the problem, as I can visit my dad (he has a dog) and its no problem. In my year of having the itch, no one else got it. I think that either I give off a chemical that attracts these things, or my skin is just-so that they can live in it.

I think the itch stopped after my tonsil removal because of the medicine they used to put me under. I was knocked out for a while and presumably the bugs jumped ship because of that.

My next task is to identify what these bugs are. Though I've never used one before, I have gotten a microscope and am trying to image them. I have found teeny sticky white things in my hair, but I can't tell if thats the bug, the egg, or bug waste. The research opportunity I mentioned would be to help me discover what these things are. I would be willing to reinfect myself and possibly even pay for travel if you think you can tell me what species of bug this is.

Thank you for reading this, and please share my story and get in touch.

tl;dr: I got very sick for over a year and no doctor could solve it. I solved it on my own. Turns out it was a type of microscopic insect that affects me, but no one else I've come in contact with (also, I promise I'm not crazy).