Supplements: A Cautionary Tale of Betrayal
When I heard
the news, I was speechless. How could basic supplements cause this? About 80
percent of people with multiple sclerosis take vitamins and dietary supplements
for their disease—so yes, I told my neurologist, I took a host of multi-colored
pills every day. Fish oil. Glucosamine. Chondroitin. Daily multivitamin.
Melatonin. Others…. “Stop them all immediately,” he said. So I threw each pill
bottle into the trash, probably a hundred dollars worth or more. There wasn’t anything
else I could do.
In the spring
of 2009, my multiple sclerosis was behaving badly (imagine if Charlie Sheen and
Lindsay Lohan went out on the town together). Two relapses in the past year and
an active MRI had convinced my doctors that the Copaxone I was taking, which
has worked so well for so many people, was just not slowing my disease enough.
But there was a new drug in Phase III trials called alemtuzumab, a cancer drug also
known as Campath, that looked incredibly promising for MS in early testing.
Fortunately the trial was still recruiting—and I looked to be a perfect
candidate.
I sailed
through the battery of qualification assessments. All that remained was a
simple blood test to make sure my body would have no problem handling the monoclonal
antibody. And that’s when I got the phone call: there was indeed a problem.
Several key values measuring liver and kidney function were low—below the minimum
requirements for the study. Something was throwing my body out of whack. And
that something was likely one of my supplements, the very supplements that I
thought might help me with my disease. I was mortified. I did this to myself,
and now my only hope to get into the trial rested on a retest in four weeks.
So I shaved
my head (hey, I was grabbing at straws), stopped all supplements (which ones
were the culprit I’ll never know), and waited impatiently for my luck to
change. It didn’t. Although my numbers were improving, it wasn’t fast enough.
My MS had turned aggressive—and now I was permanently excluded from a trial
testing arguably the most potent MS drug in the pipeline (UPDATE: releasing soon under the drug name Lemtrada). Curse words and tears
flew until I remembered there was one other clinical trial that I might qualify
for—one that I had dismissed earlier as too crazy, too desperate. It didn’t
seem so crazy or desperate anymore. And, it goes without saying, those supplements
were staying in the trash can.
Comments
I think I get your experiences with copaxone. It didn't work for me either, and after a couple of flares I stopped it. it turns out losing 16 pounds in a week is a bad thing if you're not on biggest loser. I wasn't. I just lost the ability to swallow unless it was hot or carbonated.
In any event, I like the premise of the peace. Know what you are putting in your body and ask how it will interact with everything else.
It is very unclear and confusing what each individual needs for each unique condition, when it comes to supplements, let alone if we need them at all. Inuits get all the need from the meat, fish and fats and live an average lifespan...and we are gobbling down superfoods and little herb pills? Confusing... I'll be stopping to see a holistic nutritionist to figure this out asap! :)