Friday, February 11, 2011

Just how much had I escaped?

I urinated in my pants twice before they turned off the seatbelt sign on my flight to SFO, but I had just escaped hell, so this nasty physical problem which had developed while I was in Seattle didn’t phase me. I was elated. I badly wanted my life back. My attention turned forward.

One of the first things I did after I returned was go to see a movie. Seeing wonderful foreign and independent movies had been an important part of my life in the San Francisco Bay Area before my nightmare started, and I had come to think I’d never see the inside of a movie theater again. So, I went to a fabulous movie called, “Paris,” featuring the wonderful Juliette Binoche and my favorite city in the world. Interestingly, the movie focused largely on the relationship between a sister and her ill brother. If only my sister had decided to be good to me as the character Juliette portrayed was to her brother…

I also spent a lot of time watching videos via YouTube and other sites to reconnect with other things I valued so much. Episodes of Inside the Actors Studio and the Colbert Report, the movies After Sunrise and Before Sunset, and the music of Elvis Costello, Cecilia Bartoli, and Paul McCartney comprised my starter set. This watching and listening seemed to reawaken portions of my brain that had been lost to me.

And I quickly contacted Jon Kolko to leap back into the performance of my duties as co-Editor-in-Chief of interactions magazine. There was much to do, and I was thrilled to be able to dive in. Related to this, I dove back into reading blogs and resumed my own blogging and tweeting. I also accepted an invitation to moderate a panel at CHI 2010.

While my friend housed and fed me for 2 weeks, I looked for temporary housing, speeding around the Bay Area with two extra pairs of pants in my car. (The extra pairs of pants proved to be essential.) However, before I rented anything, the reality of my situation finally occurred to me. I was in a financial hole made very deep by two forced and inappropriate hospitalizations. There was little to nothing out there that I could afford, and it wasn’t long before I was receiving numerous phone calls about my need to pay bills.

Just how much of the nightmare I had experienced had I truly escaped?

I learned of two appealing job opportunities that I quickly applied for, but as I heard that news was being spread that I had been treated for depression, I realized that securing a job was going to be challenging. Of even greater concern was the possibility that information about my second forced hospital stay and my sister’s false police report could be learned via a simple background check.

More troublesome was that I was soon to be reminded of how much easier it was for people to believe I had mental problems than to believe my brain and body could have been invaded by parasites. An intense, electric-like tingling that rose from your left foot up into your head over a period of days? Wild seizures that tossed your body all over the place? A false police report filed by your own sister who seemed so nice on the phone? Criminal abuse in a hospital in Seattle? “Seems mighty unlikely, Richard; sure you didn’t really go insane, even making anything your sister might have done justified?”

And to top things off, my health started to decline again, starting with the painful, multi-colored swelling of my left foot and leg. At least this could be clearly seen by others as a physical problem!

So, I resumed my own investigations, first by returning to the two Bay Area hospitals in which I had been a patient in order to pick up copies of the CT scans of my brain. And I dug further into the medical literature online about parasitic infections. And what did I find? First of all, on the CT scans, I found a couple of “bright circle(s) of white, the size of a dime,” as the appearance of “tiny worm(s), the larvae, the young offspring of a tapeworm” are described in a recent New York Times article. The bright circles (an example from my brain appears nearby) matched descriptions of parasitic cysts found in the online medical literature and described by a neurologist as well. And all the symptoms I had experienced matched descriptions in the medical literature of symptoms of either neurocysticercosis or cysticercosis.

Then an amazing piece of evidence surfaced, courtesy of the gastric reflux I had begun to experience several times each day. A worm came up out of my digestive system, then into and out of either my mouth or nose (I know not which, as this bout of gastric reflux caused a lot of coughing). It was a flatworm, coiled and wiggling. Unfortunately, as I stood stunned at what had just happened, the worm tumbled down into the drain of the bathroom sink. I nearly cried as I lost what could have easily been used to diagnose my nasty health problems once and for all.

Until this time, my parasite infection diagnosis was only tentative. Now it seemed to be nothing but a certainty. Short of having had my early epileptic-like seizures witnessed by others and my being taken to an appropriate doctor instead of a psychiatrist, proper analysis of the CT scans would have prevented the most devastating portions of my nightmare.

At the time of my discoveries, I was spending nights on the sofa of a former girlfriend. And during this time, my seizures returned, though they were not nearly as wild as before. My legs would flail for several minutes; large portions of my body would suddenly jolt; waves of numbness would sweep over me. On top of this, sharp pain began to eminate from my muscles, particularly those of my left arm, and I started experiencing pangs of pain in my head. Blood began appearing in my urine and stool every so often. My hair started falling out. A sticky, grainy substance started oozing from around my eyes, such that should I close them for even as few as 15 minutes, my eyes would be as if glued shut.

My symptoms frightened a new GP I began to see, and tests she ordered revealed only more problems, including “degeneration” of portions of my spine and some sort of nodule on my lung. I proposed that everything could be explained by a parasite infection, but she argued to the contrary based on the combination of the results of a blood test and her belief that a parasite infection could only be localized (a false belief).

An MRI of my brain revealed that the cysts were no longer there, and analysis of one of the “bright circles of white” on one of my earlier CT scans led to the conclusion that it was only something that had become calcified. As described in the online literature (as in, for example, "Brain Worms and Brain Amoebas: They Do Exist"), once the immune system response to cysts gains strength – a response which in and of itself often causes seizures – “the cysts are replaced by scar tissue and finally by calcium deposits,” both of which can also cause seizures. Once again, the ignorance of U.S. medical personnel about neurocysticercosis that I referenced in “What is (neuro)cysticercosis?” inhibits a proper diagnosis. My provision of copies of articles from the internet were dismissed, as if they were an insult.

As I failed to make progress with the medical personnel, the willingness of my ex-girlfriend to let me continue to sleep on her sofa declined. And she continually informed me of this in considerably less than pleasant ways, due, in part, to baggage from our failed romantic relationship.

And my health declined even further. My heart would labor at least once a day. My spine would often get soaked in sweat as it “degenerated” further, and I’d sometimes have difficulty holding my head upright. My left arm was in almost constant pain, and I could move it only slightly. Some days I could barely speak, let alone remember what I said or thought only a few moments before. On a few occasions, a portion of my vision just vanished. And as before, I felt like portions of my body were being eaten.

I didn’t know what I could do, as I believed I had exhausted all options available to me. So, I just largely gave up and withdrew, spending the greatest part of each day in my car. When I decided to reach out to some people who did not know why I had vanished, my phone calls were not returned; instead, people turned for answers from the “friends” who contributed greatly to my nightmare.

Then I stumbled on the fact that I could order from India one of the drugs they had prescribed for me in Seattle. It was not one of the two drugs usually prescribed to sufferers of neurocysticercosis to kill the parasites. However, something given to me in Seattle had conquered my seizures and other symptoms for awhile, so I decided to give the drug a try, encouraged by my finding in "Brain Parasites" that:

“…a lot of modern day medicine prescribed for Mental Health … is anti-parasitic by nature when you break it down in Medical Engineering principles. However, it is not marketed, and relatively unknown unless you look at the manufacturing and molecular structure of certain treatments.

Seems interesting that some Medications used in Psychiatry have similar molecular structure to Anti-Parasitic herbs or compounds discovered previously in nature or science...”

Happily, the drug helped. The seizures diminished, my spine stopped sweating, my ability to think and speak improved, etc. So, I decided to try to reach out once more, to let people know what had happened and was happening to me. And after sending a couple of long emails to a few people about just that, I decided to tell the whole story via a blog, which is what you are reading now.

My health is far from perfect. “You are a wreck,” proclaimed a friend. However

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