Friday, January 28, 2011

The nightmare worsens

I was not thrilled about returning to my home (see end of my previous posting entitled, “The story begins”), as the place felt like a morgue to me. The friend who had taken me in for a day and night was to be unavailable for the next couple of days. So, I reached out to second friend via phone. This turned out to be the worst possible thing I could have done.

I forget what I said during that brief conversation, but late that night, my second friend called me back and suggested that I come into San Francisco and stay with her and her partner for the night. Her partner had some ideas regarding what needed to be done, she said. So, happy about another opportunity to spend the night elsewhere than in my gloomy home, I pulled myself off the floor, gathered a couple of items of clothing, and headed for San Francisco. Upon arrival at their home, I spent about an hour telling my friend of what my brain had been up to the past few weeks. My friend tried to listen while nodding off due to the lateness of the hour.

In the morning, my friend called a psychiatrist she knew, telling him that, on the basis of what I had told her the previous night, I seemed to be having a “professional crisis,” her apparent conclusion from the subset she heard of what I said the previous night. The psychiatrist recommended that I get a psychiatric evaluation, something I had never heard of before. Not knowing what else to do, I went with my friend to a psychiatric facility in San Francisco.

“Are you suicidal?”, the receptionist asked. “Well, I’m not sure that I want to be here,” I responded, referring to being at the psychiatric facility. Yet, in we went. When the door locked behind us, I began feeling less than comfortable about what was happening. Several hours later, following an interview during which words flew out of my mouth uncontrollably – words about what had been happening to me, about my inability to function normally, and about my feeling that I was dying and couldn’t go on living like this, the psychiatrist concluded that I was a danger to myself and that I needed to be hospitalized. I was then admitted – “committed,” against my will -- to the last place I needed to be in and the last place I ever expected to be in – a psychiatric ward. I was told that the door which had locked behind me earlier would not be unlocked for me for a minimum of 72 hours – make that 120 hours, since the 48-hour weekend which fell within the next 72 hours would not count as part of the 72 minimum. I was severely shaken, having had no idea this was a possible result of a psych evaluation. I frantically tried to reach my friend who had left me alone at the facility to go shopping. There was nothing I could do.

Ultimately, I was kept in the psychiatric ward for an even longer period of time (8 days), because they learned I had written a long note saying “goodbye” – a note I had written because I felt like I was dying and couldn’t go on living the bizarre way I was; the note was interpreted as revealing that I was suicidal.

During my stay there, I had additional seizures, all at night; none were observed by others. I learned I had lost 20 pounds over the previous 2 weeks; fortunately, the food there had to be among the best offered in any hospital in existence, so I ate well, but I gained little weight. I hesitated a long time before finally taking an anti-depressant they prescribed for me; the long list of possible side effects was pretty scary. I attended group therapy sessions, which were very well done, though they were not what I needed. I played Scrabble with a psychiatric nurse (who, interestingly, cheated by playing with a dictionary!) and found that my brain was such that I could not think of any words longer than those that were simple and single syllable. I shot baskets with a basketball, and amazingly found I could do that as well as I could when I was young. I worried about money, as I was low on funds, and my medical insurance wasn’t the best. I worried about what people would think once they learned of my hospitalization. And I remained perplexed as to what had been and was really happening to my brain.

Importantly, I learned that my friend and her partner were big fans of psychiatry and anti-depressants; they argued that psychiatrists always know what is best.

Also importantly, I learned that the CT scan they did of my brain to look for physical causes of my malady revealed the presence of no abnormality. Five months later, during investigative work of my own, I learned that this claim was false (I’ll address this in an upcoming blog posting).

After being in a place for 8 days that I never would have imagined I’d be in – and shouldn’t have been in anyway, I was released into the care of both of the friends I had turned to for help. And to be released, I agreed to partake in an out-patient, group psychiatric program.

I didn’t want to be in the out-patient program, and I balked at registering for it, though initially because my brain couldn't interpret the simple application forms I was asked to complete. After skipping the scheduled meeting of a second attempt to register, I stood on a cliff in the Marin Headlands and gave serious consideration to jumping. I so feared being tossed back into a psychiatric ward for balking at registering for the out-patient program, but I overcame the feeling that I should jump, and I did not experienced the feeling again upon multiple returns to that cliff.

Ultimately, I registered for the program, but attended only 5 sessions. Clearly, the sessions were not what I needed; listening to, for example, an alcoholic patient ponder whether he should stop his girlfriend from moving in with him after she had sex with his brother, was certainly interesting, but I was in a fog and in need of something else, though I had no idea what else.

During this time, I was still not able to sleep at night (though the anti-depressant made me groggy), and I was occasionally experiencing severe pain in the back of my neck. I also experienced a scary, severe dystonic reaction to the anti-depressant -- a reaction of being unable to move a muscle or breath, and a feeling of lying inside a coffin. I went to the ER, and doctor who tended to me told me to stop taking that anti-depressant (and to tend to a couple of growths on the top of my head and on my face which he deemed likely to be cancerous, a result of my spending so much time in the sun during April). The psychiatrist who heads the out-patient program apologized for my being given an anti-depressant I would react negatively to, but he concluded that I didn’t seem to need an anti-depressant anyway -- confirmation that the entire psychiatric experience had been a huge waste of time and of money I didn't have.

Yet, this was when my friends changed their tone in their interactions with me – resorting to scolding me for not attending more out-patient sessions, for not taking the anti-depressant according to schedule -- a false claim, for working too much on interactions magazine (I had resumed working on the magazine, though the quality of my work was greatly reduced), for not snapping out of my weird state of mind, for thinking that my early symptoms (i.e., seizures, arrhythmia, etc.) revealed something serious was wrong, for being "negative" when it came to the destruction of my home and the loss of many of my belongings, and for not being thankful for what they were doing for me! I found myself being insulted in many ways, with insults extended to my typical state of mind even before this story started. Having an unhappy ex-girlfriend reenter my life increased the number of those kinds of insults dramatically. Never could I imagine that my getting sick would prompt people I had thought were my friends to repeatedly attack me verbally.

In short, I was still living a nightmare, but things were about to get even worse.

Thursday, January 27, 2011

The story begins

I do not know for sure when and how the parasite entered my body. I have my theories, but pinpointing the how and the when is difficult, because parasites can reside inside of one's body for years before they begin to do noticeable damage. I start the story during the month of December 2008, when I began to experience symptoms.

The symptom I experienced that I believe was the very first involved my inability to get to a restroom on time for a bowel movement following a meeting with a local Sr. VP of User Experience. The meeting went delightfully well, so it wasn’t because of the meeting! Soon after, I began to experience arrhythmia in the form of my heart racing unbelievably fast throughout the night, making it impossible to sleep. For some reason, this prompted no concern within me, which might have been an early symptom of my brain not functioning properly.

A few words about what was happening in my life in December 2008… During the first week of December, I flew to the east coast for an interview for the position of Director of a highly-regarded Design and Usability Center. I was one of three finalists for the position, and the interview went very well as I was “by far” their first choice for the position. I was delighted by this and planned to accept the position, but for odd reasons, I delayed a response.

Prior to this job offer, I was having a wonderful time working as Co-Editor-in-Chief of interactions magazine. I was active athletically (e.g., skiing near Lake Tahoe). I was also seeking clients and developing a business opportunity with a business partner, but the job on the east coast was perfect for me, and I was ready to leave the SF Bay Area. However, during December, I oddly started a romantic relationship of a sort. I say “of a sort,” because the romance was entirely one-sided – my side. Yet, I was smitten, and I don’t believe that would have been my normal response. It was certainly not an advisable response; indeed, this woman made it clear that she had minimal interest in me as a person. I was behaving as if I was somewhat bi-polar, and, incredibly, this relationship was the primary reason I ended up turning down the wonderful east coast job offer. To turn it down, I made up some very bizarre professional reasons, which probably made them happy I turned down the job! All this was incredibly crazy.

Another early symptom was my first seizure. During a client lunch in January, my entire body shuddered and I was unable to talk for several minutes. Fortunately, I was with my business partner, who filled in the silence. Additional seizures followed, similar in nature to the first, in a variety of places (e.g., in the Mill Valley library, in my car while I was driving through Oakland, etc.) during January and later.

In February, I suffered a great pain in my abdomen. This was the first time I was smart enough to seek medical advice, but a call to my GP revealed that he had dropped me as a patient, because I hadn’t seen him since 2002. So, I turned to Pepto-Bismol, which seemed to clear things up, though it took 2 days.

Things worsened, though (intestinally, mentally, seizurely), as March arrived, and I almost bowed out of a trip to the IA Summit in Memphis where I was scheduled to give a workshop with my business partner. I went, but spent most of the time in bed in the hotel and the rest of the time being a jerk to my business partner via insisting on trivial last minute changes to the workshop. Fortunately, the workshop went well, but the CHI conference and a panel I designed and was to moderate loomed on the horizon in April; I hesitated even making a plane reservation.

Unfortunately, I did make the plane reservation and went to CHI 2009 in Boston. On arrival, it was clear I made a mistake, as I wasn’t myself mentally. I arrived late, too late to attend the SIGCHI Awards dinner which all past award winners were expected to attend. My absence at the dinner – a necessity, as I shudder at what I might have said or done during the dinner – was, I believe, what prompted a couple of new award winners, the Executive Chair of SIGCHI, the Chair of CHI 2009, and others to give me looks of disgust when I ran into them. I even think the Chair of the conference might have referenced me in his opening conference remarks prior when he said some were never again to attend the conference.

A handful of others, fortunately, could tell something was wrong with me when they first saw me, but I didn’t know what was wrong, so I was not overly responsive. I think I mumbled that I should have taken the job on the east coast. I just wasn’t myself.

During the conference reception, one sip of a beer sent my mind into a spin, leading, unfortunately, to a couple of messy conversations during which I was offensive, as I had very little control over what was coming out of my mouth. Later, I told my panelists that I wasn’t myself and feared what might happen should I take the stage. Then, after spending another long chunk of time in bed, I headed for the airport and home three days early.

Something was wrong with me, and I didn’t know what to do. One thing I did do was bail on another exciting job opportunity I had managed to successfully interview for during March.

Things got much worse after I got home. I felt that I was freezing most of the time, spent the nights in a sleeping bag covered with lots of blankets, and spent days sitting in the sun. My heart still raced every so often, and most nights, I didn’t sleep at all. And my seizures became violent and much more stereotypically epileptic in nature. Mentally, I tried to force time to go backwards to prior to the start of all this so I could accept the job on the east coast to escape whatever was happening to me. Also, my mind felt like it was peeling away like an onion, as I thought back over my life to my childhood, ultimately recalling details of my youth I could not imagine that I would have ever again remembered. I felt that I was experiencing the process of developing dementia, and I thought I might be in the process of dying; I thought I could not go on living.

Amazingly, while lying on the floor of my home completely out of it mentally, I reached for my phone and called a friend. All I said was, “help.” And she came and took me to her home and listened to my gibberish talk and comforted me. After I spent the night on her sofa, she took me home. I then did something which, unknowingly, was the worse possible thing I could have done.

Wednesday, January 26, 2011

Symptoms I've experienced

From Cysticercosis:

"Symptoms of neurocysticercosis may include the following:
  • Nausea and vomiting
  • Headache
  • Lethargy
  • Confusion
  • Vision changes
  • Weakness or numbness
  • Seizure (often the presenting symptom, occurs in about 70% of people with NCC)
Involvement of other body tissues may cause skeletal muscle swelling, subcutaneous cysts, and vision changes from cysts infecting the eyes."

I’ve experienced all of the above symptoms.

Additional symptoms I’ve experienced include the following 17 from a slightly longer list in Parasites? Not Me!:

  • chronic diarrhea or/alternating with constipation
  • intestinal cramps
  • dizziness
  • changes in appetite
  • fowl smelling gas
  • indigestion
  • bloating
  • loss of appetite
  • restlessness and difficulty sleeping
  • sore and aching intestines
  • itching on the soles of the feet
  • coughing sputum
  • fever followed by loss of appetite
  • palpitations
  • muscle pain
  • conjunctivitis
  • weight loss
In my case, the weight loss was significant, dropping from ~190 lbs. to ~140 lbs. Interestingly and unwisely, tapeworms used to be sold as a desirable means of losing weight, as reflected in this ad shown in a video available in Brain Parasites:

I also experienced depression and, as the author of Cysticercosis put it, "altered mental status." This was to be expected, for as stated in Mental Illness May Really Be Infectious Disease:

"Signs of Psychiatric disease (depression and psychosis) were found in over 65% of Neurocysticercosis cases (caused by a tapeworm whose incidence in the US is rising..."

Additional symptoms I've experienced include blood in my urine and stool, an increase in hair growth combined with my hair falling out (e.g., my eyebrows and eyelashes are almost completely gone), rapid growth of my nails (toe and finger), difficulty thinking and remembering, difficulty speaking, change of pitch of my voice, the feeling that I am in the process of dying, change in the shape of my penis, vitamin B and D deficiency, loss of normal tears (a single, acidic tear would fall from the edge of each eye randomly, but no tears at all would flow when I was emotionally distraught), gastric reflux and difficulty swallowing, loss of muscle tissue, nodules on my lung and spine, “degeneration” of my spine and shoulders (use of my left arm is now greatly limited), severe bloating of my feet, legs, and gut, and degradation of the appearance of my skin via the appearance of numerous age spots and other growths (it looks like I’ve aged ~20 years in only 2).

From Cysticercosis:

"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."

Tuesday, January 25, 2011

What is (neuro)cysticercosis?

Though including multiple inconsistencies, much can be found on the internet about (neuro)cysticercosis. One of the most accessible articles out there is a detailed overview entitled, Brain Worms and Brain Amoebas: They Do Exist. Here, I quote other sources to describe a subset of the basics as well as characteristics of particular relevance to my situation.

“Cysticercosis is an infection caused by the pork tapeworm, Taenia solium. Infection occurs when the tapeworm larvae enter the body and form cysticerci (SIS-tuh-sir-KEY) (cysts). When cysticerci are found in the brain, the condition is called neurocysticercosis (NEW-row SIS-tuh-sir-KO-sis).”
According to some writings, pork tapeworm larvae are considered to be the the only worm larvae that can penetrate the protective barrier between the bloodstream and brain fluid.

Here is one of several lifecycle diagrams on the web – this one from the U.S. Center for Disease Control appears in the Cysticercosis entry on Wikipedia:

Notice that the diagram -- click on it to enlarge it -- states that humans are infected by ingesting infected pork. However:
“Contrary to popular belief neurocystericosis is not exclusive to pork eaters and the incidence among vegetarians is high, especially salad eaters.” (from Neurocysticercosis)
And there are other ways humans ingest the parasite. I have a couple of theories of how I ingested them, but I’ll leave that to a later posting.

Here is a dramatic video from Animal Planet’s Monsters Inside Me with related and additional info:

Of great importance is that, on the basis of my experience, the idea of having parasites in the brain is next to impossible for people to believe. People are more likely to think you are crazy -- literally -- to suggest this than they are to being open to the possibility. People try to explain away symptoms based on their own personal experience.

Also, from Parasites? Not Me!:
"It would seem that this would be an easy problem to find and treat, but just the opposite is true. Parasites come in all shapes and sizes and stages of development, and are very hard to diagnose -- most lab tests miss them. Frankly, most American doctors are not trained to look for them or even know the symptoms."
Interestingly, a full episode of the television show House was devoted to the frustration experienced by multiple doctors of diagnosing just the presence of a tapeworm in a patient's intestines. Here is a clip from the end of the show after the main character -- named House -- figured out what was wrong:

From The Overlooked Relationship Between Infectious Diseases and Mental Symptoms:

"Conventional medical practice in the United States largely ignores the possibility of parasitic disease. There are several reasons for this:

  • When a disease is never diagnosed it is easy to assume that it does not exist. Parasites are often overlooked in the U.S.
  • There is a shortage of technicians who are skilled in identifying parasitic organisms.
  • Spending one's day studying microscopic sample of stool specimens probably does not attract very many laboratory personnel.
  • There is a common misconception that parasitic problems are primarily found in tropical countries and are rare in countries like the U.S.A"
In my experience, even American doctors with some experience with the infection know very little and don’t welcome the suggestion that what relevant knowledge or experience they have is limited. These medical personnel are also quick to poo-poo information obtained via the internet.

And most unfortunately, of particular relevance to my situation (again from The Overlooked Relationship Between Infectious Diseases and Mental Symptoms):
"Psychiatric disease should be diagnosed only after careful exclusion of medical conditions that could produce the patients symptoms. Unfortunately very few mental health care providers are aware of the multitude of circumstances in which mental symptoms are precipitated by an infectious illness. A valuable clue that a mental problem may be infectious rather than psychiatric is sudden onset in a previously stable individual."
And from Brain Parasites:
“…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...”
The relevance of the above references to mental health will become all too clear in upcoming postings.

Monday, January 24, 2011

My Real Life, Unnecessary Nightmare

I believe I have (neuro)cysticercosis -- a dangerous infection of the body and brain by a parasite -- and have had it for approximately 2 years. It could have been accurately diagnosed early on, but it wasn’t. Because it wasn’t, my life has been pretty much destroyed, though not only or even as much by the (neuro)cysticercosis as by the people – “friends,” family, and medical personnel – who had the opportunity to help appropriately. Instead, ignorance, arrogance, and criminal behavior won out. This is the tragic story of what happened and is in progress.

Note that a full telling of the story would require writing a book. So, not everything will appear in the blog that could; as it is, you might think some postings are extraordinarily long. What I will include in this blog are the main threads of the story, and I'll be attempting to tell the story at a level of detail that will make the account highly readable and will facilitate understanding of what it was like to live such a nightmare. I'll also include reflections and commentary, particularly after I get through a telling of the story up to the current time, and I'll ask readers for specific input.