January 25, 2022•1,613 words
I wrote this post on April 7, 2021, but never published it. I guess I just didn't want the disease to define me. Surprisingly, it also takes a bit of courage to publish something that goes against the official whitelist of negative medical interactions. Most people believe a hospital would never give you a drug or chemical that is known to be toxic. But of course, every drug has its interactions. I publish this now because without public bug reports, nothing gets fixed.
I wonder if on that day when two women were walking past me on a hiking trail and I heard one very clearly describe gadolinium in angst—I wonder if thousands of people had talked about gadolinium before, but I hadn’t been listening. Or if I had just once again won the lottery. This time, in proper entropic fashion. My last two rolls of the dice had also won me the lottery, but not in the way you would expect. The anti-lottery.
Yeah, gadolinium has been very interesting to me lately. I hear the word everywhere. I was listening to a popular Spotify playlist and in one of the songs, I could swear she’s singing it: gadaaaliniuummm. But my wife pointed out it’s just spanish.
Gadolinium is a heavy metal in the lanthanide group in the periodic table of elements, along with neighboring rare-earth metals scandium, neodymium, terbium, and other metals you've never ever heard of. It’s toxic to the human body. You couldn’t find it if you tried, and generally don't need to worry about encountering it. Unless, that is, you happen to be dabbling with body imaging technologies. MRIs in particular.
The medical complex is expert at euphemisms. They call it “dye.” When you perform a Magnetic Resonance Image (MRI) scan to see what may be going on in your body, they need the result to be colored or "contrasted." They need something to seep through your body and permeate your skin, muscles, and veins, to draw contrast to the background. Wonderful terms, these dyes and contrasts. When really, it’s just a poisonous heavy metal.
I was incredulous when, laying down beneath the MRI scanner, almost naked save a medical gown, the technician approaches my side with a needle and pouch, and tells me to extend my arm out. I thought, wonderful, a hospital with a sense of humor! Ha—good one nurse. Surely there is no IV required for an MRI!? But she wasn’t laughing.
Oh, you’re serious aren’t you? Well then, what on earth is this?
It’s a contrast dye that illuminates the results of your scan.
O..oh. Um. Is this necessary? I wasn’t prepared for this.
Yes, the doctor ordered it. They don’t like to do MRIs without it.
Wha..uh. What are the risks?
1-2% of people get an allergic reaction, but nothing serious. Just drink a lot of water for the next few days to cleanse it out of your system.
The decision I made next would be the single most consequential decision of my life.
Is that ok? If it makes you uncomfortable we can call the doctor.
Na, doc’s a busy guy. Let’s do it. Those odds don’t affect me. I’m not a "1-2%” type person, know what I mean?
You know, when you think allergic reaction, you don’t quite think one long permanent reaction. You think of something that causes trouble momentarily, but dissipates eventually. Your immune system attacks a target it deems malicious, and, in most cases, defeats the antagonist. But what if the antagonist is un-extinguishable? What if you couldn’t simply kill the intruder, because they aren’t living in the first place? What if your immune system targets something as heavy as…metal?
What you have there, my friends, is a lost cause. What you have there is…
🌈Gadolinium Deposition Disease 🌈
Gadolinium is the name of a toxic heavy metal. Deposition is the depositing and permeation of this metal throughout your body. Disease means the host should get comfy with its new friend.
What are the perks of this disease you ask? Imagine feeling radioactive, but without the promise of quantum consciousness. Your skin stings, zaps, and glows with the cold feeling of metal vibrating and slithering through your veins and skin from the moment you wake to the moment you sleep. When in the day it makes its way into your brain, you get what can best be described as brain fog. I like to call it dizziness. You just get dizzy. And all you can do is wait for it to pass. Do you like bone pain? There’s a lot of bone pain with GDD. And a dizzying variety of other symptoms.
My friends and family ask, when I haven’t seen them in a while—how are you doing? Feeling better? Lol. is a good word for my reaction. This is where it helps to remember the “disease” classification. This isn’t temporary.
I’ll be celebrating my sixth month with GDD in a few days. The first three months I suffered emotional catastrophe the magnitude of which I had never experienced before. Before, I was healthy. Or, health wasn’t really something I thought about. But now I’ve had to come to terms with: I have a disease. It’s difficult. I remember crying early on, I’m not ready to have a disease. I’m not ready.
But there are coping mechanisms. As the months begin to pass, what happens is the person who was disease-free begins to fade. The death of my former self. And it pains like the real thing. But as with death, acceptance is inevitable. You stop mourning the loss of your past self because you forget who you were in the first place. In the first few months, I wept for my wife to show me memories of how I had been just two months prior. I could not remember who I was. Was I perfectly happy before all this happened? My wife assured me that she still recognizes me as the same person I’ve ever been, and that “perfectly happy” would not be her first two words of choice. Somehow this is reassuring.
The world of GDD is dark, complex, and, unfortunately, nascent. It’s a woefully experimental field. There is no known cure. And Big Gadolinium will do what they can to undermine the legitimacy and severity of the disease. It’s quite shocking to anyone in the medical community that gadolinium contrast agents would be toxic. “We give it out like candy,” a doctor friend told me. “No way it’s toxic.” But he’s come to learn, as I have, just how perilous this field is.
I suppose I can’t blame pharma-capatalists at their slow response towards complaint of dis-ease from their products. I’ll be honest and say that sometimes even I don’t believe my own users when they tell me of bugs in my product. It takes a large swarm of people experiencing the same issue before I'll finally recognize it as real, and prioritize it. So I guess today I am part of the swarm of users reporting bugs in some pharma company’s product. And they’re at the point of hmm..not sure if I believe you. But more and more doctors are speaking out after recognizing the undeniable harm this long-accepted practice is causing.
One of the world’s foremost experts on radiology and MRIs, Dr. Richard Semelka, having authored numerous papers and university textbooks on radiology, is in fact the author of the 2015 paper first describing Gadolinium Deposition Disease. In a blog he keeps, he talks about the risks and criticisms he’s had to face to speak out against something as widely accepted as gadolinium-based contrast agents. His treatment is a process known as chelation, which involves chemicals that are injected into your body that scour it for heavy metals, which are then redirected to the kidney for excretion via the urinary tract. But there are risks. The treatment is likely what you would call “beta”—some may have bug-free recoveries, others may not. The factors are not all known.
I’ve won the anti-lottery twice so far. First, for a medical procedure performed in 2019 that still causes me some discomfort to this day. And second for the MRI in 2020 to check on that procedure. The disease arising from the latter has quadrupled my previous discomfort and angst.
But, life is handsome. We have the chance to roll the dice once more. Isn’t that something? I can perform chelation treatment for a good chance at recovery, but with a 1-2% chance of making my situation even worse.
Surely you can’t win the anti-lottery three times in a row?
Hold my beer.
January 2022 Update
At the time of writing this post, I was still heavily contemplating chelation therapy. Ultimately, I decided against it. To me, it's like chemical surgery. And I will avoid surgeries like the plague itself. Chelation could make things better, but it could also make things worse. And as uncomfortable as this disease is today, it can definitely be worse. There are people who have had eight or more contrast injections. I just had one. For them, the disease is crippling. People have lost their jobs and relationships. For me, it's painful and uncomfortable. But I can still walk. I can still type. I can still do just about anything. I just can't do it as comfortably as I did before. This I can accept. But I cannot accept walking into another medical setting, getting another medical injection, and walking out worse than I came in. I simply won't take that risk. So I've decided to live with it.
For a more recent recount of my experience, read 2021.