I’ve written about being a patient at the Bastyr Center for Natural Health several times. Initially, I felt very positively about the whole thing. That has changed. For readers who are here because they’re following this healing journey of mine, I wanted to update you.
It wasn’t my experience with the Andrographis Plus that is why I left. Sure, that was freaky and absolutely no fun. But when you have an illness that no one understands or can even diagnose properly, let alone treat with any success, trial and error comes with the territory.
Here’s why I left:
The communication at Bastyr between doctor and patient, and clinic and patient, is poor. When I was having those sky-high blood pressure attacks, I wrote about that to my Bastyr doc. No response. The website says they’ll get back to you within 48 hours. When I called the front desk later and said this was frustrating, the woman I spoke to shared a personal difficulty that my doctor was going through, that was absolutely none of my business. Not only that, but the indirect message of her tone suggested I was kind of an asshole for feeling frustrated at all.
Doctors are humans, and so are their families. Their lives are filled with the same stresses and frailties inherent in all of our existences. But it’s not appropriate to tell me, a patient, what is going on in my doc’s personal life as an explanation for why they weren’t getting back to me. And it’s pretty crass to suggest that the patient, who literally went to the ER with high blood pressure thanks to her Bastyr medicine, shouldn’t have every right to feel frustrated when they are promised a response they never receive. Every doc there should have another doc that’s covering for them, and if that isn’t possible, for whatever reason, then I should simply be told, “Our apologies, there was an emergency.” That’s all that needed to be said.
When I finally did get an appointment, my doc suggested a new herb to try, Lomatium. She said she’d prescribe a tincture, and that I was to take 10 drops to start, and then work up to 20 drops a day. Fine, sounds good. I’m very familiar with tinctures.
When I got down to the Bastyr dispensary, I was anxious, tired, and wanted to go home, so when the woman running the counter charged me $46 for what I assumed would be a small bottle of tincture, I felt grumpy but said nothing. I really want to get well. If it costs $46 for a bottle of tincture, okay.
Until she passed over a tiny bottle wrapped up in an ice pack. “It has to be kept cold,” she said.
As we were driving home, and I unwrapped it, only then did I realize that it wasn’t Lomatium tincture, it was “Lomatium isolate”, and it was a dram. A tiny bottle. A dram of liquid has 20 drops in it. Which means that if I took it as prescribed, once I’d tapered up, I’d need one dram a day. That’s almost $1400 a month.
Why does anyone need an isolate, anyway? Turns out that Lomatium is an incredibly interesting herb, but about 1% of folks get a rash. The isolate keeps you from getting the rash. But we don’t even know if I’m in that 1%, and even then, I don’t want to take something that will cost $1400/month.
I called the dispensary and asked to return it, since I never opened it. It’s still sitting in my fridge. I was told there are no returns on prescriptions, full stop, thank you, the end. She said if I hadn’t wanted it, I shouldn’t have paid for it. How am I supposed to know what I want? I’m not the doctor. I’m sick, and I’m coming here because a major symptom of mine is brain fog. Why am I responsible for my doctor’s mistake?
So I wrote to the doc via the Bastyr app for patients and said, what is going on? I’m happy to try a Lomatium tincture, but what is this? I waited. I called and asked why I wasn’t getting a response, they said she was busy and would get back to me soon. I waited. Eight days later, after my second call to the clinic, she wrote back, and apologized. She’s trying to get the dispensary to make an exception and give me my money back. She’d let me know when she heard back. Meanwhile, if I wanted to order a tincture through them, I could do that, and she would give me instructions. I immediately wrote back and said I’d already purchased my own tincture (from Herb Pharm for $14), and that I would love instructions for taking that. I got no response. That was four days ago.
I’ve just had enough. I’m tired. Bastyr seems to want you to keep coming back, but it’s not keeping up its end of anything. They couldn’t even schedule me an appointment with her again, because they didn’t know her schedule. They said, “Try back next Tuesday,” and when I did, I was told they still didn’t know and had no idea when they’d know. ???
As a patient, I shouldn’t have to feel exhausted dealing with my practitioner. I shouldn’t have to feel like my messages are going into the ether, and that there is no one higher in the clinic who can take over for my doc and help me get clarity on basic things like my prescriptions or my treatment plan. If my own doc can’t respond, that’s fine, but then have someone else get back to me to tell me the status of my case. Don’t leave me hanging for days, weeks. And when you make a mistake, fix it, especially when that fix is as easy as issuing me a check for $46.
Where I’ve gone to now:
I’ve been reading a website called CFS Remission. I discovered it many months ago, but found it hard to read. I still find it hard to read, but I’ve slogged through enough at this point to be intrigued by the guy’s experience, and especially his approaches at addressing gut bacteria. As I was stumbling around, I discovered his doc is actually in Seattle, and not only that, she’s in my neighborhood.
I went to see her today. I was very impressed. She’s very intelligent, and strong, and wonderfully nerdy about her field. Every idea she had, she explained to me, starting with the science but then breaking down any concept I didn’t recognize. She recognized research I’d read, and was very familiar with the research at Stanford. She’s the first doc to actually seem to have her nose in every bit of research that I’d looked at about this.
She’s clearly a big biochemistry geek, which was fun to watch. At one point, noticing the look on my face, she grabbed a sheet of paper and drew me a diagram. I really enjoyed this, I never tire of listening to people talk about what they’re passionate about, and in this case, what she’s passionate about is the exact medicine that might help me. She didn’t make me any promises, and she was very clear that while she thinks and hopes I can get better, it won’t be easy. Things can get worse before they get improve, as we try things, tweak things. It was reassuring to feel like I knew exactly where we both stood. She also made a plan, and informed me exactly where to find her notes online, and how to contact her, and reassured me she had ample back-up in case I had an emergency and she wasn’t available.
I left feeling hopeful. But then I always write that, don’t I? I left feeling hopeful. I have a lot of hope. I’m so sick of being sick. I will just keep trying things until I can’t try things anymore. That’s all I can do. I will just keep doing it.
Time for bed.