In February I decided to visit the ER of the UCSF Medical Center (the closest hospital to my home) after yet another "ocular invasion" (attack of the eye), during which my eye swelled shut with intense pressure, and felt like it was continually being pricked by 1000 needles at the same time. At this time I was starting to lose my hearing as well. By the time I became fully aware of it, I estimate that about 50% of my hearing was gone. (Within 2 weeks my hearing slowly returned to normal, although there have been many recurrances of this since then)
After an 8-10 hour wait, they examined me and noted that my eyes and ears did seem to have some kind of infection. They told me to go see an E.N.T. (Ear Nose Throat) Doctor and then discharged me. (I never went to see an E.N.T.)
Before the doctor discharged me, he happened to mention a word to me which I had never heard before. "Morgellons". He did not elaborate other than to say that one of the former physicians in at UCSF had left his practice to start a clinic or research center to study "Morgellons".
He did not explain what Morgellons was, but implied that I should do some research about it. I asked him to write the word down for me, so I'd know what to look up. He wrote a single word down for me on a piece of paper. "Morgollons" (It was misspelled, but I figured out once I got home that he must have meant "Morgellons") I still have that paper around here somewhere!
He acted like what he was telling me was "hush hush", and then discharged me shortly afterwards. This intrigued me to the point that I immediately looked up the word "Morgollons" when I got home. (and then Google suggested "Morgellons" instead)
At first it was difficult wading through all sorts of sites offering various snake-oil remedies for Morgellons, but finally I found some legitimate sites, and some research articles written by Ginger Saveley, FNP.
THIS WAS IT! Finally! my symptoms outlined perfectly! After 2 years of inexplicable symptoms that didn't add up, I believed I finally had an explanation! Why had I been unable to find this info before? I suppose it must be because most of my previous google searches included the word "Parasite".
I began to spend almost every waking hour researching this new lead, until I became certain that THIS was at last the explanation for all my mysterious symptoms!
THEN, about a month later, during which time I only left my room occasionally to eat, and had no other real social contact, I suddenly realized that I was turning yellow! My skin was yellow, my eyes were yellow, and I felt much more awful than usual.
I headed back to the ER at UCSF Medical Center. This time they admitted me, (after making me wait for about 14 hours in the ER waiting room) and ran all sorts of tests for 6 days ($40,000 worth according to the bills they still send me), before they concluded that I had Hepatitis A, and sent me home.
In retrospect, I recall that during my prior visit to the ER a month before, I used a filthy toilet in the Hospital lobby. Since all of the toilets were in atrocious shape (some with vomit, others with fecal matter) I carefully selected the least horrifying toilet, having to clean some fecal matter off the seat with toilet paper before using it.
I believe this is how I must have come by my Hepatitis A infection. A Nosocomial Infection. As if I didn't have enough problems without that! You'd think in a hospital full of sick people they'd do a better job of cleaning the toilets!
The good thing that came out of all of this was that I was able to discuss my symptoms in depth with several doctors at the hospital during my stay, and they ran a battery of tests for me. Unfortunately none of them were familiar with Morgellon's. While they eventually came to the conclusion that I was suffering from Delusions of Parasites, just as the previous doctors I had seen did, at least they bothered to take a scientific approach, and run some tests first. (One theory they were considering for my Jaundice was a parasitic blockage)
While I gained no further insight into my illness, I had at least gotten an extensive battery of tests that ruled out other possible causes such as HIV, Hep C, cancer, etc.
While I still was suffering from all of the symptoms that I attribute to Morgellons, and no closer to finding a solution, at least I could take comfort in the fact that all my tests seemed to indicate that I was healthy of all the other conventional diseases.
