Sunday, February 27, 2011

To those who chose to not believe me

The paper, “Brain Worms and Brain Amoebas: They Do Exist” begins with this paragraph:
“At a recent evening lecture at the California Institute of Technology, a neurologist was explaining the ins and outs of new brain-imaging technology to an audience composed of Caltech professors, students, and members of the general public. The audience was rather quiet, lulled by the technical tone of the lecture. But when the neurologist mentioned in passing that the disease afflicting one of his patients was caused by a brain parasite, the whole room sat up and made a collective noise of disgust and alarm. Brain parasites!”
Yup, brain parasites. They do, indeed, exist. Unfortunately, too many of the people I’ve turned to for help have not been willing to believe that. They've made "a collective noise of disgust and alarm," too, but have done so while concluding I must have lost my marbles.

Hundreds of thousands of cases of brain parasite infection have been diagnosed, literature available online about neurocysticercosis is extensive, and numerous stories of specific cases can be found in articles available online (see, for example, “The Headache that Wouldn’t Go Away”) and on episodes of Animal Planet’s “Monsters Inside Me”). Yet…

While all cases are different…
"Neurocysticercosis is pleomorphic in its presentation due to individual differences in the number, size, and location of the parasites, as well as differences in the severity of the host's immune reaction to the parasite." (from "Cysticercosis")

… it is interesting to compare my case with the case of a friend of mine -- yes, someone I actually know and is a professor -- who lives and works here in the San Francisco Bay Area, and has for many years (as I have).

Two years ago (about the time my symptoms started), he suffered a violent seizure in the presence of his uncle whom he was visiting in Los Angeles. (I suffered most of my violent seizures when alone.) As my friend told me, he was very lucky that this happened to him in the home of his uncle, because his uncle is a medical doctor, who promptly took him to an emergency room where multiple people were required to subdue him. (In contrast, the “friend” I turned to for help took me to a hospital’s psychiatric ward for a psychiatric evaluation, at which I had no control over what words were coming out of my mouth.)

At the hospital in LA, my friend had a brain MRI, which revealed the presence of what the radiologist concluded was a tumor -- a misdiagnosis. (After I was inappropriately committed to a psychiatric ward, I had a less-detailed brain CT scan, on which no abnormality was detected -- also a misdiagnosis.) His MRI discovery led to emergency brain surgery to remove the tumor; instead, what they removed was revealed by pathological analysis to be the cyst of a pork tapeworm. This prompted his neurologist to seek out a parasitologist, which proved to be a difficult task. Eventually, one was found who, according to my friend, seemed to be uncertain about an appropriate treatment. Nevertheless, he prescribed what appears to be a standard treatment: albendazole -- a month's worth -- to starve any remaining worms, and two years of anti-seizure medication. (Failure to detect the abnormality in my brain led to a prescription of anti-depressants and psychiatric therapy. After neither had any positive effect, I was repeatedly insulted and lost my home and many of my belongings; I suffered more seizures and many additional symptoms; my sister filed a false police report against me; I was committed to yet another psychiatric ward where I was terrorized and nearly sent to a psychiatric hospital for the rest of my life; then after barely escaping, I confirmed the diagnosis of neurocyticercosis while wasting time and money I didn't have on doctors with minimal knowledge of parasitic infection.)

Where and when did my friend ingest the eggs of the pork tapeworm? He will never know, though his hunch is that it happened when he was traveling in developing countries where neurocysticercosis is common. (Where and when did I ingest the eggs of the pork tapeworm? I will never know, though since I, too, have traveled in developing countries where neurocysticercosis is common…) It is possible it happened to both of us right here in the San Francisco Bay Area.

Two years after his violent seizure, my friend is doing fine, and his life has mostly returned to normal. (In contrast, two years after my initial seizures, I find myself living ‘on the street’ and struggling to get the medical help I need.)

So, there is an example of a confirmed case of neurocysticercosis that occurred right here in the San Francisco Bay Area -- a case that didn't go quite as well as it could have, but compared to mine... And I've learned that his is not the only confirmed case in the area. So, why has it been outrageous for some to even consider that my case is another example?

And as for my claims of criminal abuse in a hospital in Seattle… Impossible to believe, right? No such thing could still be occurring in this day and age, certainly not in the United States, right?

Take a look at an article that appeared in the New York Times during 2009, the same year of much of my nightmare: “Abuse Is Found at Psychiatric Unit Run by the City.”
“After a yearlong investigation, the Department of Justice portrayed the unit at Kings County Hospital Center as a nightmarish place … operated like a prison.”
Documented abuse on the unit included patient rape, patients being forced to perform oral sex, and patient confinement for purposes of punishment rather than therapy.

A quick search on the internet yields reports of abuse elsewhere, such as in psychiatric units in Georgia, a psychiatric hospital for youth in Washington D.C., and a home for dementia patients in California.

One would hope such cases were anomalies. However, the words of one patient about staff where she was hospitalized suggest that may not be the case (see "Inside closed doors of mental hospitals"):
“The worst part is they know almost nobody would believe you or take you seriously if you told anyone about what they did to you..”
I hope it is obvious that I’m not a happy camper about what has been done to me. The fact that I’ve authored this blog should, alone, be ample evidence of that.

Note that my friend who was diagnosed with neurocysticercosis recommends that I go to Mexico in order to have my malady diagnosed and treated accurately. Should taking such an extreme step be necessary?

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