My Story #1

I am over 60 now and I am not quite sure when exactly this all started. I do remember when I was about 10 years old my family took a trip to the Everglades and went 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. Instead 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 that was when I first acquired dirofilariasis. There is no way to really know, but this would be my best guess.

As a young child I was generally healthy but at some point after that trip I started having headaches on a daily basis but that eventually passed. Only I never actually felt “well” after that but I learned to push myself. Later when I was in college I drove a blind college mate out to the Eastern Shore (MD) so that he could play his banjo at a small festival down near the water. While I was waiting for him to finish up so we could take that 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.

In the summer of 1999 I was working in my back yard holding a very sharp sheet metal purple martin bird house I was taking down when a horsefly landed and bit me on the leg, as I had no chance to shoo it away, or slap it, so all I could do is watch as it took a big chunk out of me. The wound was oozing for days and not looking well as that bite area got inflamed. I simply used antibacterial gel for a week or two and it finally started healing over so I did not seek any medical attention for it. My sensations of feeling ill grew worse and I started having really bad reactions to eating certain foods. By the time the 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 because I was so dizzy 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 a blood test, PET scans, and a finally a confirmation by a laparoscopic biopsy, but there was never any cause of this condition identified. Since it was not caused by TB the doctors just lost all interest in my case and the sarcoidosis eventually resolved on its own.

I was then given a skin test for food allergies (IgE only) but I only reacted to the single histamine control prick, but clearly I was unable to eat so many things. I discovered the ALCAT test for food sensitivities which identified many things that I could not eat, and after removing the worst 40% of foods from my diet that I tested positive for I was finally able to feel well enough that I could then know when I just ate something that was bad for me. The vertigo subsided and I was no longer falling or bumping into things. This reprieve at least allowed me to figure out many of the other foods that I could not be tested for but was eating and I was able to start feeling ever so slightly human again.

During the next year the bite mark on my leg had been growing into a lump on my leg. It grew to become a rather large skin nodule about the size of a quarter, so I asked my doctor if it was cancerous. Her reply was no and that surgery would not be needed. For a while this was fine, but it kept growing larger. My doctor obviously 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 with enough loose skin just enough that I could tie it off to restrict the blood flow to it and hoped perhaps it might either recede or cause the tumor or whatever it was to die slowly. After getting a little impatient I then applied some wart remover to try and help it along, and a couple of days later the top layer of skin came off exposing a small cavity filled with a 6″ long white thread like thing coiled up in it. I had no idea what that white thread could be but I was late for work so unfortunately I tossed it in the trash thinking I could figure it out later. Little did I know that white thread, a full grown filaria, would be the only evidence needed for getting a an actual diagnosis for my disease, but I would not learn that about the disease for another three more years. I’m still kicking myself.

After 20+ years of waiting for the doctors to figure something out that might help me, one thing was obviously clear. I was on my own. If I didn’t do something about my own health condition nothing would ever be done. I switched doctors many times over those 20 years and each time I had a doctors appointment it seemed like they spent the first 10-13 minutes of my allotted 15 just familiarizing themselves with the huge list of test results which left almost no time for any productive dialog. I started then researching diseases and symptoms and created a huge matrix of all the potential diseases having symptoms like mine and one by one I used an elimination process. Every day a few more diseases would come off the long list of potential diseases. While I was clearly declining in health day by day at lease I had hope that I might finally find something that might be treatable.

In the end the only category of diseases that seemed like a viable explanation for my wide variety of symptoms was the nematode family of diseases but still 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 learn everything I could about my dogs historical problems so that we could better understand what we might need to know about his present condition. I was already studying the human nematode diseases so this was simply a widening my understanding of this same class of diseases. That is when it clicked for me. About the only time that humans are discussed in any medical case studies was when someone had a skin nodule removed, like mine. 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 of empathy. I no longer had that nematode sample that I pulled from my leg and found that there was not even an approved test for the disease in humans. Even when I had all the proper referrals to see any parasitologist or immunologist I was unable to even get an appointment. I found that I was on some kind of a medical black-list and I was unable to even get a factual conversation with anyone after that. No doctor was even willing to have a scientific dialog but rather they gave the receptionists the lovely job of making me 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 medevaced to the ER several times for suspected pulmonary issues none resulted is a clinical diagnosis. 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 from work 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 enough sleep it was impossible to perform my job. The writing was on the wall, I was going to have to retire because I was completely unable to do my job. During those six months that I was on medical leave I had stabilized somewhat but I was not going to last very long if I continued working. I loved my job and would rather 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 medical disability because there is still no diagnosis for my disease. It appears that to these doctors I simply don’t exist as a human being. Instead I should be shunned and berated for having the audacity for seeking help. Clearly their clairvoyance skills still need a little work.