Dermatologist B runs the Dermatology Department at a large hospital far away from Dublin. He has written and co-authored several papers of skin diseases.
At this stage, I’d taken many photomicrographs which I’d transferred to my iPhone to show him. I still didn’t know what I was looking for, so I shot everything that looked strange or abnormal. All I knew was that whenever I got a tickle, if I brushed the site gently with my fingers, three things would always fall off – a greenish plug, a single filament or tiny clump, and a flake of dead skin.
So I concentrated on these. I also had red marks on my hands, arms, abdomen, and back, with long red meandering trails on my thighs, abdomen, and solar plexus which I photographed with the iPhone and my iMac’s iSight camera.
To be fair to Dermatologist B, at this stage I hadn’t seen any green plugs with organisms emerging, or visible inside. In fact, it wasn’t until I had finished seeing him more than a year later that I first came across one. This made me go back through all my 2,500 images with new eyes. I found them. Lots of them. I don’t know how I could have been so blind. I had seen the plugs in my hair follicles though and tried to show him those images.
The night before the first appointment, I had 40 minutes sleep and consequently was extremely distressed and almost suicidal. My appointment was for 3.20 pm but Dermatologist B was busy with another patient and could only pop his head round the door a few times while his registrar interviewed me. I described my situation and its history for her, then showed her the photos. She looked at them, nodding, but made no comment.
Finally, at about 5.00 pm, Dermatologist B was free but apologised that he could only spare 10 minutes since he had to rush off to an emergency at another hospital.
I saw Dermatologist B, sometimes with his registrar, a total of 24 times, travelling there and back from Dublin on the train. He presents as a very nice, kindly, and solicitous man. I felt in safe hands, and I felt my stress levels go down.
How the diagnosis was made
Dermatologist B: So what are these sensations you’ve been having? Can you describe them?
Me: Did you ever have to answer the phone while you were washing your hair? You know that ticklish feeling of soap bubbles popping on your scalp? That’s the feeling exactly.
Dermatologist B: (shaking his head) No. I can’t say that’s ever happened to me.
Me: Well, it’s also a bit like a hair flick sensation, like someone behind you flicking one of your hairs.
Dermatologist B: (looks puzzled).
Me: Or something just suddenly present on your scalp or face, like a fly just landed. Or took off.
Dermatologist B: (perks up) So it’s like an insect crawling on your skin?
Me: Well, it’s not like movement from place A to place B. More like a sudden foreign presence on my skin, or a movement in place.
Dermatologist B (big smile) I know what your problem is, David, and while I might not be good at some things, I’m very good at this. I’m going to give you an injection in your hip and I want to see you again in a fortnight.
Me: So what is it? Scabies?
Dermatologist B: It’s sort of related.
Me: What’s the injection? Ivermectin?
Dermatologist B: It’s sort of related.
See how he kept fishing until he had the textbook answer he required?
He then had me pull up my sweater at the back so he could shine some sort of light (not black light) on my lumbar area for a moment. Then pronounced himself satisfied.
And so home I went, relieved at last that something was being done after a whole year of suffering.
But when I got home, I made the biggest mistake of all.
My humongous error
I made up a new bed (a bed-settee) in a different room with brand new bedding. And that simple act led to yet another year of torture.
Because I slept for 10 solid hours for the first time in a year and woke with only a few tickles.
There and then, I decided to throw out my old bed (which had actually been my mother’s since I’d already lost all my own furniture), all the bedding I’d ever used (for the third time), rip up the bedroom carpet and dump it, then dust the entire floor with diatomaceous earth.
Dermatologist B took this improvement in tickle numbers to be due to his treatment. And, to be honest, so did I.
I went on seeing him at fortnightly, sometimes weekly or three-weekly, intervals, each time receiving a depot injection, and each time trying to show him my new photomicrographs on the iPhone. He would either glance at a couple, or cite the hallway full of patients outside waiting to be seen. During one visit I offered him pill bottles of various specimens I’d collected and asked if they would be useful. He smiled and shook his head.
So I decided to build a private website where he could view my full-size images at leisure. In light of later discussions, I have a hard time believing he ever did.
All this time, the tickles never left me, though they were not as bad as they’d been before I changed my sleeping arrangements.
And then, one visit when I reported (as usual) that I was still getting tickles, he told me he wanted to prescribe some tablets to augment the injections. There was only one slight problem, he said.
They were usually prescribed for people who suffered from schizophrenia. Risperdal is the trade name. Risperidone is the drug.
It was what the injections were. I was being treated with an anti-psychotic drug without my knowledge or informed consent.
From the very start, his diagnosis had been delusional parasitosis (DP).
But what about the green plugs?
Excess sebaceous material, he said. Blackheads.
Blackheads that were various shades of green and orange and self-ejected from my face, scalp, neck, arms, abdomen, back, groin, perineum, legs, and feet. I actually watched one being ejected from my pubic area until I could bear the sensation no longer and brushed it off. I photographed it – it’s in the “Plain Plugs” gallery. It’s the biggest one I’ve seen so far.
I had blackheads as a teenager. They were black. And they had to be squeezed out, painfully. In fact, when I got home from this appointment, I examined my face in the mirror carefully and found one blackhead high on my cheekbone. It was, you guessed it, black.
So if these green self-ejecting plugs were blackheads, I’d just made medical history.
What about the microscopic filaments growing from my skin?
Then he changed his mind about the tablets. We’d continue with just the injections, if that was OK by me.
Obviously, I reasoned, since delusional parasitosis was his area of expertise, he knew what he was doing. So I continued with the injections.
No offer to treat for this excess “sebaceous material” was ever made.
Meanwhile, because he assured me that I was not infectious and made a point of shaking my hand at every visit, I got builders in and had all the carpets in the house ripped out and dumped and new wood floors installed. At the same time, I had a new heating system and radiators put in as well as external home insulation.
And then the side-effects of the Risperidone started to kick in.
The hell of Risperidone
Risperidone is an atypical anti-psychotic drug used to treat conditions like schizophrenia, manic episodes of bipolar disorder, and aggressive behaviour in Alzheimer patients, children, and teenagers. It’s also used to treat depression and, yes, delusional parasitosis.
No one fully understands how it works. It cures nothing, merely manages.
The side effects are truly vile. These were mine:
- Akathisia (inability to be still coupled with a racing mind – normally disappears after stopping the drug but can last for years, or even for the rest of your life – called tardive akathisia). I still have this.
- Panic disorder (day-long panic attacks).
- Severe sleep disturbance. I still have this.
- Erectile disfunction and disinterest in sex.
- Breast growth (in males).
- Severe memory problems. I still have this, slowly but steadily getting worse.
- Blurred vision.
- Constant runny nose and tearing up. I still get this at night.
- Loss of appetite.
- Stomach pain.
- Increased frequency of urination.
The following quote is from Wikipedia and best describes akathisia produced by drugs like Risperidone:
Jack Henry Abbot (1981), a convicted murderer and author, described the effects of akathisia produced by antipsychotic drugs when given without the necessary medication for side effects (e.g. procyclidine) as may occur in prison and even sometimes hospitals: “These drugs, in this family, do not calm or sedate the nerves. They attack. They attack from so deep inside you, you cannot locate the source of the pain... The muscles of your jawbone go berserk, so that you bite the inside of your mouth and your jaw locks and the pain throbs. For hours every day this will occur. Your spinal column stiffens so that you can hardly move your head or your neck and sometimes your back bends like a bow and you cannot stand up. The pain grinds into your fiber... You ache with restlessness, so you feel you have to walk, to pace. And then as soon as you start pacing, the opposite occurs to you; you must sit and rest. Back and forth, up and down you go in pain you cannot locate, in such wretched anxiety you are overwhelmed, because you cannot get relief even in breathing.”— Jack Henry Abbot, In the Belly of the Beast (1981/1991). Vintage Books, 35–36. Quoted in Robert Whitaker, Mad in America (2002, ISBN 0-7382-0799-3), 187.
My life became a living hell for almost 24 hours a day.
My family doctor prescribed Kemadrin (also known as procyclidine), an anticholinergic drug used mainly to treat Parkinsonism, to deal with some of these extrapyramidal symptoms. It didn’t work. Dermatologist B agreed with the use of Kemadrin and prescribed Vallergan Forte to deal with the sleep disturbance. This worked for a while. Then I was back to 3-4 hours sleep a night.
The City University Gets Involved
After the course of injections had ended and the tickles still hadn’t got any better (worse, in fact), Dermatologist B professed himself impressed by my persistent microphotography and asked me to bring some specimens for the next appointment because he wanted a university research scientist colleague who specialised in optics to look at them. She would also check them out with the University’s Entomology department.
I’d already destroyed all my previous specimens so I needed fresh ones. I gathered a few plain green and brown plugs, some plugs with growing filaments, one or two plugs in hair follicles, two different types of cocoon-like objects, a few individual filaments from my scalp, some clumps I’d found cemented inside my sleeping-bag and to my air-bed, and some skin flakes, all in individual pill bottles. I also arranged access for her to my private website.
At the next appointment, I met the lady, handed over my package, and showed her some of the photos on my iPhone.
In her presence, Dermatologist B then announced that he wanted me to take another course of Risperidone, a higher strength this time. I refused. He said if I didn’t, he’d be forced to write to my family doctor stating that he wouldn’t be treating me any further because I wasn’t co-operating.
So I made a deal with him
I acceded to the first injection. I said if it made the huge difference he believed was initially due to the very first one, I’d take the full course. If not, I was finished with Risperidone.
He agreed and gave me the injection.
It made no difference whatsoever. If anything, it made things worse. And now I had increased akathisia and all the other nasty side effects to look forward to.
At the next appointment, I asked him if there’d been any results from the specimens. “Yes,” he said. Then just shook his head with a sad look.
I told him that I was now worse than I had been and that I’d take no more Risperidone.
Thus, we agreed that I was wasting my time and money travelling so far to see him any longer and ended the relationship.
Before I left, he checked out the spaces between my fingers (presumably for scabies burrows).
And that was the end of my involvement with Dermatologist B.
But his diagnosis has remained a millstone round my neck.
Read on to continue the story...