Originally published in “Talkabout”, September 1999.
In May 1999 I had one of the scariest HIV-related experiences I have had since my encounters with CMV in 1996! I literally, for a brief period of time, lost control of my feet. Already having problems with peripheral neuropathy, this just added to the incertainty and conjecture surrounding the causes. Initially, I couldn’t walk a steaight line up a footpath, but staggered from left to right with no control whatsoever. It got so severe that I eventually had to resort to using a walking stick to get around! Cassie Workman was at a loss! Thyroid, cortisol, B12, folate, a CT scan, Gallium scan all done to negative results. It took a further MRI and lumbar puncture test to reveal that at some stage during my transition from one drug combination to another, the virus had crossed the blood/brain barrier and got into my brain! By the time it was discovered, the new combination had kicked in, and problem resolved itself. It was a scare I could have done without, as the symptoms were also indicative of some very serious – and deadly – brain disorders! HIV in those days was good at throwing curve balls!
The moral to this story is to never brag! I had been telling a work colleague of a rise in my weight to over 70 kgs, a record weight for me, and a record I was damn proud of. Within a few days of this, however, chaos had set in, and the treasured weight was going to have to be fought for.
This bloody virus just never leaves you alone! I stare at the magnetic scan images in my hand, and admire just how sneaky it can be. The pale grey ‘clouds’ that drift over the image of my brain are evidence of its brief visitation, the disorientation and fear it caused, all too recent to be forgotten.
It started so simply. As I have mentioned in other articles, I returned to work just 18 months ago. My health, including T-cells and viral load, had been excellent for this period of time. I guess I may have become a bit complacent, thinking good health was something I could now take for granted. As has also been mentioned in other articles, I have severe peripheral neuropathy in my feet. It is slowly progressing, and is about half way along my feet. When the staggering started, my immediate thought was that it was just another phase in the progression of the PN. I could not walk a straight line, and when walking up the street, staggered quite visibly from one side of the footpath to the other. At the time this was happening, I mentioned to people that I wasn’t feeling ‘right’, I couldn’t put a finger on what it was, it was just a general feeling that things weren’t as they are supposed to be. I was going through some changes to my combination therapy also at this time, and thought that may have had something to do with it. Well, it did! But not in the way I expected.
The next phase of the illness consisted of a feeling of chronic lethargy. It became an effort not just to get up in the morning, but to get dressed, and to motivate myself to get up the street to get to work. I lost my appetite, and libido. Then I started to drift off to sleep on the bus in the morning, this symptom extending to falling asleep at home as soon as I sat in front of the TV, both these things not being normal for me. It wasn’t until I nodded off to sleep in front of the computer at work that I realised something was going seriously wrong.
A series of tests was started. I had iron, folate, and B12 tests. They were all normal. I went to Albion St Clinic and had a test for a disease called Addisons (the symptoms for this disease were identical to what I had), and it also came back negative. I went and had Gallium and CT scans, and nothing showed up. By this stage, my walking had deteriorated to such an extent that I was relying on a walking stick to get around. It was thought I may have had bio-chemical depression brought about by returning to work and suddenly finding myself with the prospect of ongoing life, so I was, reluctantly, prescribed anti-depressants. My weight dropped to 58 kgs, and I literally had no appetite at all. My partner and I had up until then a very healthy sex life, and this dropped away (quite rapidly) to nothing. He started to get very concerned, though managing to hide it. Going out anywhere with me, especially with the walking stick, was a long ordeal. The only advantage to it was that I always got a seat on the bus.
My doctor eventually ran out of possible causes for my condition, and made an appointment for me to see a neurologist at St. Vincent’s Clinic. He put me through a long consultation, with a series of tests to check reflexes and responsiveness. During the consult, he asked me to do a number of simple walking steps like heel-to-toe, and I was unable to do them without losing my balance. His diagnosis wasn’t hopeful, telling me that it could have been one of several very nasty diseases, including one called PML (Progressive Multifocal Leukoencephalopathy). I don’t actually know what it is, but the look on his face said all that had to be said. There was a possibility of undetected Syphilis infection from years ago, but a test soon cancelled that option out. He wanted me to have a lumbar puncture, but rang me the next day to say I was to have a magnetic scan first, just to see if anything turned up. These scans are more thorough than CT scans, and more likely to show up problems.
If you are claustrophobic, don’t even consider these scans. You have to stick your whole head inside this small cylinder, with ear- plugs in, and foam wedges to hold you steady. The machine itself makes a noise like a pneumatic drill. I took one look at it, and said ‘no way unless you knock me out’. They did!
As mysteriously as all this started, it began to reverse. I returned to the neurologist a week and a half later, he being as surprised as I was to see I was walking again. He had received the scans, and they showed evidence of HIV infection on the brain, quite visible when viewing them.
To say this frightened the shit out of me is an under-statement. I have always been very good with my treatments, and consider myself about 95% compliant, which is pretty good, considering how long I have been popping pills and, at times, the quantity I have had to take. Somehow, the virus had used an opportune moment between combinations to cross the blood/brain barrier. Everyone on combinations take at least one drug to prevent this happening, so it shows you how persistent the virus can be. It doesn’t so much hide as sneak around, looking for opportunities to invade various parts of us that are not so well protected. If I ever thought there was an argument not to take drug holidays, this is it! What damage it could have done to my brain if left unchecked horrifies me, especially the prospect of Dementia. They seem to think that the anti-virals brought it under control, and for my sake I would like to think the same.i
A month after all this and I am back to normal – appetite, energy levels, libido, the whole works. I hope to return to work within the next month. It looks as though I will still have to undergo a lumbar puncture (they’ll have to knock me out for this one, too!), as they want to know what drugs I have become resistant to. Over the period of the illness my viral load did a rise, the first in almost two years. The frightening part is that within one week, it rose from 3000 to 19000. It is now back under control.
I have lived a long time with this virus Almost all my time as an active gay man has been spent as HIV+. I have put up with, and survived, a number of HIV related illnesses. I intend at this time to live a lot longer with it. If drugs and hope are the ways and means I will have to use to follow this intention through, then that is just what I will do.
Tim Alderman ©2000 (Revised 2017)