So, a few months have gone by since my last post. The only reason for this has been pure sloth. The really disgusting part about this laziness is that I have been writing posts in my head. “”Oh, this would make a good post. I could use this pithy turn of phrase here, and find a non-copyrighted photograph of oligodendroglia to place just so…” etcetera.
It has gotten to the point where I am now forced to post SOMETHING just to find relief for the sheer backlog of topics in my head. Also, I promised something in my last post. I believe it was claimed to be along the lines of the most exciting, mind-blowing news of the year (I could probably read my own blog to confirm whether or not I said this, but whatever). Given the unintentional hiatus I took, it will now be the most exciting, mind-blowing news of last year.
Back in October, my husband and I went to cool, hip and understatedly cosmopolitan Madison, Wisconsin. While my husband has family up north this was not a trip for pleasure, but one made in the name of science. After being tipped off by my other Rachel, I found an alternative multiple sclerosis treatment study was taking place at the University of Wisconsin. The theory being tested is that trichuris suis ova may benefit MS patients by down regulating the destructive inflammation that leads to new lesions in the central nervous system (CNS, if you’re nasty). This therapy has proven to be rather effective in treating Crohn’s disease in other studies, and so logically it is worth a shot for other inflammatory conditions. The results of the first phase study with MS patients have been promising, so promising that phase two was starting up just as I found out about in through clinialtrials.gov. I was able to get in touch with the charismatic and amiable Dr. John Fleming, and made arrangements to attempt to qualify for the trial.
Now, if you haven’t Googled it already, trichuris suis ova is the scientific name for pig whipworm eggs. Yes, pig whipworm eggs.
I do want to take a minute here to state if the idea of intentionally getting worms freaks you out, stop reading. And when I say “stop reading”, I don’t mean just this post. I mean, go away and take your Diet Coke with you. Because I am going to write about even more freaky-deaky shiz as time goes on. And honestly, a controlled and sanitized clinical study at a renowned university hospital involving microscopic parasites may be the very LEAST of the wormy and germy things I am willing to do in the name of my well-being.
The husband and I spent about half a day at the U of W Department of Neurology to determine if I was qualified to get worms. There was some cognitive testing that was done, and quite a bit of blood drawn. The most telling results would come from the research MRI, however. At the time, I knew I met all of the criteria for participating in the study with the exception of having an active lesion on my brain. My last MRI was done in April at the Mayo clinic, which showed no actively enhancing lesions. But a lot can happen in just a few months, especially with a condition as unpredictable and vicious as MS.
A good chunk of my stay was spent getting a fresh MRI done. And this just wasn’t your garden variety MRI, but a fabulously advanced research MRI that is supposed to show all sorts of things you couldn’t see otherwise without glamorously high definition resolution. (Disclaimer: This is just my understanding of how a research MRI is different. I might be over-exaggerating here.)
It took a few weeks to get the results back, and when Dr. Fleming finally did call the news was…not what I was expecting.
Evidently they managed to find a lesion. A lesion less than a millimetre in length. A lesion so small it took TWO radiologists to figure out what it was. A lesion that for all intents and purposes was already dying down (inflammation-wise). I was really expecting an all or nothing scenario. Either my brain would be spotless and decidedly un-inflammed, or that is would be ravaged like fiery and wrinkly swiss cheese. But, no. Just this tiny, almost imperceivable lesion that a regular MRI would not have picked up.
I was pretty stunned. Dr. Fleming assured me that the results were great, that it meant my condition was very stable. Technically, I still qualified for the study. But I had to think about it. For as many curve balls that were thrown at me over the last year, I was still unprepared for that news (which, in retrospect, was silly of me).
After some soul searching, a health retrospective and several conversations with my husband I decided to decline participating in the study. I really good the best news I could have possibly received. While a lesion is definitely a “not good” thing, the fact that I had one and it had such a short life was an awesome thing. It suggests that everything I have been doing to keep my levels of systemic inflammation low are working. That, or by virtue of being young and nubile (snicker) I have kick ass powers of recovery. Looking back, I think that lesion came about because of a cold I had been fighting all that week. I was very worried that my immune system might get a little crazy because of it. But like a naughty teenager who had thrown a house party while the parents were away, it managed to glue that broken vase back together just in time…okay, I don’t think that analogy makes any fucking sense. But I will leave it here until I think of a better comparison.
Now, don’t get me wrong. I would have absolutely loved to throw some worms back every two weeks. But the drive to Madison can be long and dark, and making that drive during the winter did not seem like a very welcoming idea (in fact, the only bad part of the trip was the fact we arrived in WI under the cover of darkness – that state is PITCH BLACK at night). There was also the time I would have to take off of work, the cost of gas and lodging, the time I would be away from my SO… The stress alone might have been enough to counter the good vibes from the worms!
Would I have gone through with it if I my brain was on fire? Well…I don’t know. What I do know is if the trial goes nationwide and I can get worms closer to home…well, who the hell doesn’t like providing a stool sample in order to get parasites?