Story 1

I am over 60 now and I am not quite sure when exactly it all started. I remember when I was about 10 years old my family visited the Everglades on a walking tour to see the alligators in their natural habitat and while we were walking we were asked not to kill the mosquitoes, but each person was to brush off the back of the person in front of them. I can not say for certain but after being bitten so many times in a single day it is quite likely when I first acquired the disease.

As a young child I was healthy but at some point after that trip I started having headaches on a daily basis but eventually got over that problem but never actually felt “well” after that. Later when I was in college I drove a friend out to the eastern shore (MD) so that he could play his banjo at a party down near the water. While I was waiting for him to finish up so we could take the long drive home the mosquitoes came out in droves. There were so many of them I was forced to retreat back to my car just to get away from them as it triggered what I believe was a fight-or-flight situation. I was clearly feeling ill after so many mosquito bites.

In the summer of 1999 I was working in my back yard holding some sharp sheet metal when a horsefly bit me on the leg, as I had no chance to shoe it away or slap it, so all I could do is watch as it took a big chunk of me. The wound was not looking well as it got inflamed and after some antibacterial gel it eventually started healing over so I did not seek any medical attention for it. My sensations for feeling ill returned and I started having really bad reactions to eating certain foods. By the time they year 2000 rolled around I was having all kinds of problems. I had severe intestinal cramping, fatigue, and vertigo. Some days I was unable to walk and even had to crawl on my hands and knees from my bed to the bathroom just to vomit. After my wife asked for a divorce and we were physically separated I was finally diagnosed with sarcoidosis from blood tests, PET scans, and a final confirmation biopsy, but there was never any cause of the disease identified. Since it was not caused by TB the doctors lost all interest in my case.

I was then given a skin test for allergies (IgE) to foods but I only reacted to the single control, but clearly I was unable to eat. I discovered the ALCAT test for food sensitivities and after removing the 40% of the foods I was tested for I was finally able to feel well enough to know when I just ate something that was bad for me. This allowed me to at least figure out the other foods that I was not tested for and was able to start feeling slightly human again.

During this time the bite mark on my leg had been growing. It grew to become a rather large skin nodule so I asked my doctor if it was cancerous or anything. Her reply was no and that surgery would not be needed. For a while this was fine, but it kept growing bigger. Obviously my doctor was not going to give me a referral for a surgeon so I started thinking if there was any way I could take care of it myself. I was still able to pinch it and lift it up enough that I could tie it off to restrict the blood and perhaps it might cause the tumor or whatever it was to die slowly. After getting a little impatient I then applied some wart remover to it to just help it along, and a day later the top of it came off exposing a small cavity filled with a long thread like thing coiled up in it. I had no idea what that could be but I was late for work and unfortunately I tossed it in the trash. Little did I know that white thread (filaria) would be the only way to get a an actual diagnosis for my disease that I would not even learn about for several more years.

After 20 years of waiting for the doctors to figure something out one thing was clear. I was on my own. If I didn’t do something nothing would be done. Each time I had a doctors appointment it seemed like they spent the first 10-13 minutes familiarizing themselves with the huge list of reports and test results which left almost no time for productive dialog. I started then started researching diseases and symptoms and created a huge matrix of all the diseases having symptoms like mine and one by one started the elimination process. Every day a few more diseases would come off the list of possible diseases. While I was clearly declining in health at lease I had hope that I might finally find something that might be treatable.

The only category of diseases that seemed like a viable explanation was the nematode family of diseases but there was no perfect match to be found. About that time my family adopted a rescued heartworm positive dog and I figured while I had my head in the books I should try and learn everything I could so we could understand what we might need to know about that disease. I was already studying the human nematode diseases so this was simply widening my understanding of these diseases. That is when it clicked for me. About the only time that humans are discussed in medical case studies was when someone had a skin nodule removed. The sensations I had been feeling were not neurological but rather the physical signs of Dirofilaria. What I was not expecting was after I mentioned this to my doctor I got instantly labeled with “Delusional Parasitosis” instead. I no longer had that sample pulled from my leg and found that there was no test for the disease. Even when I had proper referrals to see a parasitologist and an immunologist I was unable to even get an appointment. I found that on some kind of a medical black-list and was unable to even get a factual conversation with anyone after that. No doctor would even listen and simply gave the receptionists the lovely job of getting me to go away.

While I had been able to partially manage my food intake to minimize my health issues I was clearly on a downward spiral with each year, month, day slowly getting worse. I had involuntarily been taken into the ER several times, all with no diagnosis, and I even had a seizure while driving home from work one night. Back in the ER and out again with no diagnosis, but now I was unable to return to work because I was without any means of transportation. I lost my access to all the medical journals and I would not be allowed to drive for six months while completing my period of mandatory medical observation. Eventually when it was close to the six month mark I was finally able to find a ride into work but still each day was a real struggle to get anything done. I had been unable to sleep due to not only the immunological issues but also due to the parasite, and without sleep it is impossible to perform my job. The writing was on the wall, I was going to have to retire because I was unable to work. During those six months that I was on medical leave I had stabilized but I was not going to last very long if I continued. I loved my job and would have worked until the day I died, but continuing would simply not be possible. I had no choice but to retire early but I can’t even get on disability because there is still no diagnosis for me or my disease. It appears to them that I simply don’t exist. Pretty soon I probably won’t.