What started out as a post or two about my personal experiences has now become bigger than Ben Hur. Thank you for continuing to show interest and I am humbled by the positive comments, the empathy and also to see other veterans sharing their experiences. So, let's head off to East Timor, shall we?
Before I deployed in the October I took three days loading dose (a loading dose is an initial higher dose of a drug that may be given at the beginning of a course of treatment with the aim of achieving the target concentration rapidly) of either Tafenoquine or the placebo Mefloquine. Interestingly mefloquine is now widely known to cause all sorts of temporary and permanent psychological issues and is not meant to be loading dosed.
Here you have two similar drugs, both of which cause a massive array of side effects, but the drug company hide this information from those on the trial… doesn’t seem right does it. Those that were unfortunate enough to be given the mefloquine took a much higher dose than was needed or is recommended… how was that a good placebo or control for an experiment?
Finally, I am in East Timor but really not enjoying it as much as I should be. The constant diarrhea was really draining me and when I mentioned this at my first monthly check up the research officer snapped “that’s not a side effect of this drug”. I was exhausted, strung out and confused as to why I was feeling this way – I thought the idea of a drug trial was so that they could monitor any changes – good or bad. After this response I just kept my mouth shut during my subsequent monthly check-ups.
By the end of my second month in East Timor, I was having anxiety attacks and feeling generally depressed. My usual happy-go-lucky attitude had disappeared and I just moped around, did my job, avoided people, even friends, and tried to sleep whenever I could. Some days I could barely get out of bed I was so exhausted. My physical health was being impacted as well. I would go on a run and find myself gasping for breath, definitely not normal for me. My mental health was declining further, paranoia was settling in; I believed everyone was talking about me, smirking at me, whispering to each other as they looked out of the corner of their eye. I couldn’t trust anyone. I wanted to disappear. I wanted to shrink into another dimension and no longer exist.
By around the 5th month, we were told the next deployment wasn’t likely to be ready to take over from us; we may need to stay a few months longer. This was the worst thing I could imagine and I spiralled. I couldn’t escape, I was stuck inside the compound, working long hours and couldn’t leave unless I was with at least one other person. There was nowhere to hide, nowhere to get away from everyone.
Time passed and I continued to survive in my living hell. The deployment was not the exciting and enjoyable experience that I had so looked forward to.
At last, I received the news that the next deployment was on their way and I would be packing my gear and heading home. I was so happy to be escaping, not realising that it was the drug that was affecting both my physical and mental health but I was not alone as many others who deployed along with me had also been suffering, in silence, many of the same side-effects. On my last night in East Timor, those in charge allowed everyone to have a few celebratory drinks, the first in around six months. We could all have six beers, VB I think – yuk, but who is going to turn their nose up, right? These six beers were accompanied by a handful of pills, anti-worming pills I do believe. What nobody was told was that those anti-malarial drugs should never be taken with alcohol.
That night I came close to ending my life! The feelings and thoughts that were swirling around in my head after drinking those celebratory drinks were overwhelming and that was the first time, but not the last time, I had ever felt like that. I looked for somewhere and somehow to do it, but there were people everywhere, thankfully.
I, and many others, were supposed to be on a drug trial, so who was controlling this trial? Who was responsible for the wellbeing of the trial participants? Did anyone care at all about us? Did anyone truly listen to what was being said at the monthly check-ins? Why wasn’t the trial aborted or participants who reported overwhelmingly negative side-effects removed?
So, I might be headed home but the Toni McMahon that was landing back in Townsville was definitely not the same young, carefree girl who left those six months before. Of course, the story doesn’t end there … in some way, this was just the beginning. The beginning of a lifetime of living in hell.
How Being a Drug Trial Guinea Pig Changed My Life – Part 3
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