Tuesday, February 1, 2011

The nightmare worsens even more

As the “friends” I turned to for help began to turn on me (see end of previous posting entitled, “The nightmare worsens”), I started searching the internet for possible explanations for what had been happening to me. New markings on my genitals, my tongue, and my chest prompted me to wonder whether AIDS or syphillis was the culprit, as I discovered photos of markings akin to mine among photos of patients with such STDs. So, I went to be tested for these and other STDs, but all tests were negative.

Then something weird happened. During the day of the final outpatient therapy session I attended, my left foot started tingling intensely. “The extremeties of alcoholics sometimes tingle,” claimed the session leader whom I asked about my foot. Had I become an alcoholic without my realizing it? I had my doubts, though I had been drinking more for the past several weeks than ever before.

Most surprisingly, the tingling started climbing up my left leg.

“Anxiety is almost certainly the cause,” proclaimed the psychiatric head of the out-patient program, “with a heart problem a less likely possibility.”

My GP, who had finally agreed to add me back to his list of patients, suggested Lambert-Eaton Syndrome, a rare autoimmune disease, might be the cause, and he warned me of the possibility of dire consequences should the tingling – a virus – climb into my head. A nerve conduction test from a neurologist dismissed the GP’s suggested diagnosis.

Whatever it was, the intense, seemingly electric tingling continued to rise, and seemed to rise faster at night when I was more relaxed and was lying down. I began to stay upright and to keep a log of what I was experiencing, as I was worried about dire consequences referenced by the GP even though the neurologist rejected his suggestion. A snapshot of one of the logs I made during the wee hours of the morning appears nearby (click on it to see an enlargement).

I told my “friends” of what was happening, but, consistent with their having turned on me, they thought I was imagining it all, though one of them was able to feel the electric-like tingling when touching my tingling ankle.

Around this time, my driving my car became inadvisable. I was unable to “see” all the things I would normally see when driving, plus my head would fall to my chest every few minutes as I drove. I nearly struck multiple pedestrians, and I drove through a couple of stop signs. I’m surprised I didn’t have a major accident.

Also around this time, my friends began to argue the necessity of my moving out of my home and in with my sister -- a nurse -- near Seattle. My sister offered to take me in, and my “friends” thought it unwise for me to continue to live alone given the state I was in. However, I did not want to move in with my sister; I only wanted to find out what was wrong with me. My “friends” were not disuaded and began to toss some of my belongings into boxes and separate things out that they decided should be sold via a yard sale or given to the Salvation Army. I was instructed to finish the task and was given a firm time limit.

One might think I’d have been able to say “no” to all of this, but I could not do so, as I was rendered largely nonfunctional by whatever was affecting my brain. However, I tried to figure out what I could do to buy time.

Meanwhile, over several days, the tingling had continued to climb up my left leg. It eventually reached my groin, where it remained for quite sometime, increasing in intensity. Then one afternoon, it moved up into my chest, and I began to get scared. I decided to drive to Marin General Hospital to sit outside the ER in case something bad happened if it rose into my head.

On the way to Marin General, it rose into my head. I parked the car, and pondered what I should do. Curiously, my right hand and arm moved on their own backwards to the right and into the back seat of my car, ultimately pulling my entire body into the back seat. I was astonished. I got out of my car, walked to the ER door, and stood there for some time wondering what I’d say to the doctors, concerned that my having been a psychiatric out-patient might prompt a second forced stay in a psychiatric ward. I walked back to my car and got back in. Almost immediately, my right hand and arm again moved on their own backwards into the back seat, and then pulled the rest of my body back there with them. I could not believe what was happening to me. The presence of three police officers nearby convinced me to leave to escape detection. I drove home.

After I got home, I went into the basement, and, amazingly, I began to spin rapidly on my feet in circles to the right. The spinning continued until I reached out to grab the washing machine or dryer in order to stop it. I’d then let go, and the rapid spinning would resume. I stopped it again, then tried to experiment to see if the spinning could go to the left. It could not – it would only go to the right.

This might all sound rather scary, but I found that I was not scared by it at all; I was only utterly amazed! Since I don't believe in demonic possession... What concerned me most was that I was sure my friends would think I had truly gone crazy.

After spinning and spinning for a half hour or more, I went upstairs into my home, plopped down on my loveseat, grabbed onto it, and tried to go to sleep. Since I still could not sleep at all, I went to my computer, held onto the chair I was sitting in, and started to search for an explanation. This time I somehow found an article and a video which suggested I was infected by a parasite.

The next day was the day my “friends” decided I’d hold a moving sale. But in the morning, I told them I was not going to leave my home. Not surprisingly, the response was not supportive, so to soften the negative response, I suggested continuing with a sale, but of only fewer things than they had intended. That is what we did, but the extreme tension made the experience of the sale about as unpleasant as it could be.

Then, shortly after the conclusion of the sale, my body plunged onto the ground and rolled backwards to the right several times. I picked myself up and went indoors, where my body plunged onto the floor and resumed rolling, again backward to the right. My awestruck friends grabbed onto me, put me in a car, and took me to the ER. There they did another CT scan of my brain. “All clear,” announced the doctor, who echoed an earlier claim that my symptoms were likely due to anxiety. A few months later, I would learn that this CT scan, as the one I had before, was NOT all clear, but revealed the presence of a parasitic cyst in the center of my brain just above or on my hypothalamus.

Two days later, I was in the office of a neurologist to whom the ER doctor had referred me, and on the office wall was a poster which outlined the four stages of Alzheimer's disease. Interestingly, I found that the description of stage 1 matched some of my new mental limitations exactly. I mentioned this to the neurologist, who just scoffed at my claim. Additionally, without seeing the CT scan, she said an MRI and a lumbar puncture would be in order to better determine whether, indeed, a parasitic infection was responsible for my seizures. However, she proclaimed that that potential cause would be unlikely.

Sadly, I got neither the MRI nor the lumbar puncture, as my friends' plans for my leaving my home moved forward rapidly. Indeed, a few days later, my remaining belongings were either thrown into boxes or given away. My large items of furniture were dismantled hastily, damaging some of the pieces. Then things I would retain were hastily loaded onto a flatbed truck and taken to and haphazardly placed into a storage unit. My home had been destroyed, my life was being destroyed, and I was in no condition to stop any of it.

Throughout this time, I continued to have wild seizure-like experiences, many of which started with me climbing up onto furniture. I could not stop any of this from happening, but I could cushion some of the blow being experienced by my body so that I wasn’t getting too badly bruised. On a couple of occasions, instead of my body rolling all over the place, my arms flailed about uncontrollably, sometimes for a couple of hours. On one occasion, the experience of my right hand and right arm moving back and to the right reoccurred, this time while I was sitting in a branch of Bank of America; it was challenging to make that look like nothing out of the ordinary had happened. I could watch the muscles in my legs pulse rapidly and randomly, and it felt as if my muscles were being eaten. Throughout this time, the tingling continued, including the movement upwards into my head, across the upper-part of my back to the point at the base of my skull that had ached before the tingling ever started.

And the insults from my “friends” continued, as I remained largely nonfunctional and indecisive. I was good at standing or sitting, but not accomplishing anything else. I was pegged as homeless by a cop looking for a criminal in San Francisco and by the ticket taker at the Rafael Film Center (of which I had been a member for years), who shooed me away. Ultimately, my “friends” openly proclaimed that I had become insane and that it was too bad no money existed to find out why this had happened.

Then one evening, I was taken to the airport, where I boarded a plane for Seattle and my sister. In Seattle, things were to get even worse – MUCH worse.

1 comment:

  1. Dear Richard,
    I am so sorry for what is happening to you. My heart goes out to you and I can relate to the same symptoms you are having, but just like your experiences no one in the U.S. understands what parasitic infection is. I am currently trying to figure out what is causing this throbbing headache in my head and these crawling sensations in my brain and on my left shoulder blade area. I discovered it had to be parasites and nothing else. My husband thinks I am imagining all these things and I recently took a CT scan when I went to emergency and they told me my x-ray was normal. I got my x-rays tonight and started to do more research online to figure out what parasites or cysts are in the scans. The diagnosis the radiologist mentioned were extra-axial spaces normal for my age. I disagree with their diagnosis and clearly think doctors should get their act together. I still suffer even though I go to a Chinese herbalist, which is really expensive and I get pulse electromagnetic therapy once a week now. Treatment is expensive when health insurance doesn't cover alternative methods. That's too bad..I really want to punch them in the face. I have read many forums of people with the same parasite diseases and I read about all their methods that work for them. The problem is money. It costs too dam much to get the treatment that actually work for you. I feel your pain because I am going through the same thing. I continue to have hope and hope in God that everything will get better for me and many others who suffer from the same thing. I am a driven person and continue to battle this everyday. Look for PEMF therapy and see a Chinese herbalist and don't rely on the system. This is the only advice I can give you as far as treatment options. PEMF is electrocution to kill parasites. It gave me relief in my back and shoulders, which I can no longer feel them crawling in my back. Actually I used to live in the bay area and that's where I discovered PEMF from a naturopath doctor in the Oakland hills. I live in the Seattle area now which is weird when you say you're from the Bay area. Look up PEMF theapy in the bay area because I know someone out there carries that machine. You are not crazy I believe you. I have hope one day you will recover and I will too.
    Best endeavors, Bunny