I recently had a pleasant conversation with someone about CBD oil that quickly escalated into an ugly debate. The reason? I was still raw after witnessing my students' grief as they lost friends and family to Vermont's opiate crisis. As a physician, she wanted to make it clear that there has been essentially no research on the medical use of CBD (or marijuana). I had listed the potential uses for CBD, like seizures, autism, and pain management, but when she asked for my sources, I was shocked to realize that most of it was coming from word of mouth, posts on facebook, and random people I knew.
What has happened to my standards? As a teacher, I drive my students crazy scrutinizing everything they bring up, looking for credibility in their sources. Granted, when your students blurt out things like "Obama was born on a plane from Kenya" and "black people started the Ebola crisis by having sex with gorillas," there is clearly a need for more critical thinking. **Note: most of my students are not this extreme!**
Medically speaking, I've typically believed that health trends can be fishy, and before jumping on a bandwagon I need to hear the idea confirmed by multiple doctors and backed up by several large-scale studies or medical trials. I was always a non-interventionist; pain is a normal part of life, so there was no need to take meds for migraines, period cramps, joint pain, diarrhea, depression, anxiety, allergies... I would just struggle through it, because I didn't like medication and felt stronger knowing I could outlast my pain. Only when things got so bad I couldn't sleep, would I take a fraction of a dose to dull the symptoms enough to drift off. It's important to note here as well that I react really weirdly to most medication, likely due to the MCAS that wasn't diagnosed back then, and so some of my gut reaction was because I thought I had a weak liver that just couldn't handle meds.
So, how did I get from that to being someone who takes several medications daily, one that costs $700/month, and cites a story I saw once on facebook?
Desperation and lack of faith.
I have lost faith in sources I once saw as credible. The more I learn about our medical institutions and pharmaceutical companies, our government, our education system, and the statistics they all cling to, the less I trust any of it. The more times I went to the doctor and was hurt emotionally or physically by their brief opinions, the less I trusted what they thought. For example, "Just try an antidepressant for your GI symptoms. They're probably just psychosomatic," followed by the wrong dose being prescribed, a month of not sleeping, daily morning sickness, and then shaking with withdrawal symptoms on the floor of my office when I couldn't get an appointment and tried to ween by myself.
The thing is, I don't even blame them. They are being pushed by huge hospitals to get their RVU's -- relative value units -- up. Yes, we are no longer patients, for whom you care and spend time trying to help. We are now revenue units to fit as many in per day as possible. How are doctors supposed to do their jobs in such an environment? They don't get paid to do extra digging and researching unstudied diseases. And on top of that, medical school did nothing to help my providers prepare for my illnesses. They know next to nothing. So yeah, I've lost faith in medical science to fix me. When I ask physicians, even specialists, my questions, they have no answers. Or they each have a different answer. Or they have an answer that I know isn't true for me.
And then comes the desperation. When I finally found my diagnoses, I was desperate to try anything to see what could help. My "I'll just suffer through it" attitude was replaced by "maybe I don't need to suffer for the rest of my life!"
One provider put me on Clonidine, figuring if she could get my sympathetic nervous system to chill out, then the parasympathetic would work better, and everything would be fixed. This was before I dumped Costco-sized buckets of salt in my food, so I had quite low blood pressure. Clonidine lowers blood pressure. Thanks to my newfound lack of faith, I stood up for myself and said I was worried, so she suggested we'd try it for a week and then reassess and go off if it didn't go well. I reacted horribly to the medication. My family thought I was dying. I couldn't hold my head up or drive or think clearly or feel real emotions. I slept all the time, but not well. After a week, I couldn't get my provider on the phone, email, or in person. I didn't want to just stop the Clonidine without checking in wither her, after the Lexapro incident above, so I hung on for weeks, waiting to hear back. It became my new normal until my partner finally made it clear that it was ruining my life and I went off.
So the lack of faith continued. My symptoms, however, also continued to worsen. I was ready to try medications, diets, lifestyle changes, whatever... as long as it wasn't just something suggested by a doctor. I needed to do my own research, and soul-searching, to make sure it made sense to me. For example, a mast cell GI specialist recommended I go on Zyrtec, Zantac, and querecetin (all histamine-receptor blockers), plus a mast cell stabilizer. My disease is causing my mast cells to overreact to histamine. So it made sense to me, in researching mast cells themselves, to limit my body's histamine reception and to stabilize my mast cells.
But again, the research on EDS/POTS/MCAS isn't great and each study yields different results. So I've turned to different types of research. When two MCAS specialists said that low-histamine diets are useless and sometimes detrimental, I thought about all of the times I'd felt better and the role food played in those times. I thought about the logic behind removing excess histamine and allergens from my life, rather than just medicating the crap out of my histamine receptors. I thought about the low-histamine chef who drastically minimized symptoms without medication. I ignored the two specialists and started a life-changing diet.
I am thankful every day that I am science-minded, that I grew up with doctors, that I studied some bio in college, and that I'm pretty good with research. I am financially stable enough and mobile enough to see specialists who have actually heard of my diseases (a rarity). But my greatest allies at this point, other than my incredible family, are the online communities of other sick people. I can post in a forum of people with the same diseases and get a variety of people who've experienced the same things. Not only do I get different opinions on what my doctors have suggested, I can also receive a healthy dose of solidarity and compassion in the process.
What I think has happened to my research standards is this: the more I look at "official" research, the more I think they don't actually know what they're asserting. The more "experts" I see who don't actually know the difference between MCAS and mastocytosis, and the more doctors I see who know less about my disease than I do, the less I trust the experts and institutions. The more I try things from random people I met online (and have never seen in person), and the more those tips actually work, the more I trust every day people like me. And when that helpful, compassionate, information comes from places like facebook and simple word of mouth, my brain starts to soften the disdain and skepticism I once felt for gathering information from such unregulated sources.
PS -- I actually have very complicated opinions on CBD and medical marijuana, so please do not read anything in one direction or another from my comments at the beginning of this piece. Thank you :-)