Category Archives: Chronic Fatigue Syndrome

MD on Twitter tells me to see a “real” doctor, not a “quack” naturopath

Due to nothing so much as a lack of attention to social media other than Facebook, I rarely post to Twitter intentionally. Mostly what goes on my feed (@sewbiwan) is links to my blog posts that are auto-posted for me. So I was surprised yesterday when I checked my feed today and realized I’d missed some replies. In response to my last post, I’m leaving Bastyr and moving on to a new naturopath, I saw this:

He’s referring to a blogger I enjoy and follow, Naturopathic Diaries, written by a former naturopath. Really interesting stuff, definitely worth checking out if you’ve ever had an interest in how and what naturopaths learn. Bastyr, our local naturopathic university, isn’t too happy with her and has actually sent her a cease and desist letter. I got a cease and desist letter once, for giving a business a poor review on my website (way back in ’96 – wow I’m old), so I know a little about this. I’ve read the posts Bastyr is upset about, and their letter just makes it look like the blogger is right and they’re afraid. I agree with the blog writer that it’s important information to talk about. If Bastyr is so afraid of her revealing something, then that says a lot about what they might have to hide.

You might wonder why I enjoy an anti-naturopathic blog but am seeing a naturopath. My worldview is that science is the best lens we have through which to observe the known universe, and while not perfect (just as people aren’t perfect), good scientific data trumps most things (nearly everything – I’m struggling to think of an exception), most of the time. That said, there’s theory, and there’s experience. I have experience with ten years of good medical care from smart, well-educated MDs. They are great people, with a lot of ideas, and they’ve been able to do nothing for my CFS/Fibro (I’ve been diagnosed with both).

If the theory is that evidence-based-science rules all, then I should have made some progress. Yet, since I’ve been diagnosed, I’ve gotten steadily worse over time. Does that make me say, “MDs are quacks”? No. Science can only know what it observes, and unfortunately, very few people have looked at these disorders, and what research is taking place, is still deep in trials and testing phases. The Stanford program, for instance, took me nearly a year to get into and only made me sicker (caveat: my new naturopath suspects that the Stanford antivirals program might work much better after we’ve fixed some other things). The science is baby-new and conclusions are drawn and then re-drawn on a regular basis.

Where does that leave me? Up shit creek, is where it leaves me, every single day. Every single day that I can’t hold a job, go back to school and finish my degree, take the trips I want to take (from across town to across the world), do enough chores to keep the house looking tidy, or give my kids all the experiences I want to expose them to before they grow up and leave the house.

Up shit creek is where you’ll find naturopaths. They’re used to seeing people at the end of their ropes. Both the naturopaths I saw recently said almost the same thing to me, “All I see are outliers.” If some of these MDs weren’t so busy making people who are going to see naturopaths feel like ignorant sheep, they might notice that these human beings (often very sick human beings) are going to see these “quacks” because MD’s aren’t offering them squat.

For years I avoided seeing a naturopath because I thought exactly the way this guy does. They’re quacks! Bastyr charges their naturopath students thousands of dollars to learn homeopathy. And yet, I couldn’t help but notice that the few people with chronic illness I’ve met, become friends with, or read about, who have seen improvement, have gone to see a naturopath. (Sometimes this professional, like the one I’m seeing, is a “functional medicine” naturopath, and LAAAWD, if you really want to see MD’s get their undies in a twist, talk to them about functional medicine. I dare you.)

When I finally went to see a naturopath, I was prescribed B vitamins, a turmeric supplement, an herbal supplement, and some tea. I thought, “I was right, this is nothing but junk science.” But two weeks later I began improving, and a couple weeks after that felt better than I had in years. My shock at how much lemon balm tea helps my anxiety led me to study herbal medicine again. And yes, the Andrographis Plus didn’t work – in a kind of spectacular fashion – but it was the most promising result I’d ever had from any treatment, ever.

Do I buy into some belief that naturopaths are better than MD’s for everything? No. Do I think they might have some interesting ideas about CFS? Yes. And since my insurance pays for them, which means I’m not out $$$ every time I see one, it behooves me to at least try. Not because I’m anti-science, but because I’m pro-doing-anything-to-get-better.

And so I replied.

And then he replies:

I wasn’t surprised to get this. Always, the assumption is that the person just isn’t doing it right. But what killed me was that the article he links to has outdated information! It’s wrong. It recommends the GET protocol, graded exercise, which has been shown to be based on bad science and probably hurt thousands of people. This article tells you what you need to know about that. It was truly awful.

Also ironic: his linked article is written by the National Health Service, which is Britain’s medical system. A good friend of mine lived in Britain for many years and struggled with many of the same health issues that I do (though not the same diagnosis). She finally found help with – wait for it – a functional medicine doc. My friend is an intelligent, educated, rational person, but she also found herself stuck in a system that couldn’t do much to help, so she went elsewhere and whaddya know, found someone outside the traditional system, who helped her make significant progress.

So I wrote back:

He responds:

He has no leg to stand on here. His response is basically to tell me that I should avoid quackery (which in his view is all naturopaths), and go to a REAL doctor doing evidence-based medicine. But in the same breath, he admits that “No one has good answers to CFS,” and what he suggests is “small-scale work on antiviral agents”, which is, first of all, exactly what I’ve already tried. Not that he should know my medical history, or have read my blog, but why be so arrogant to assume that I’ve not tried a “real” doctor in the past?

Not to mention, he’s proving my point: the science is still in its infancy! It’s ridiculous to tell someone “go get some evidence-based medicine” and point to some study of a few hundred Italians when this is not a standard protocol that any patient off the street can access! My own GP, a very insightful physician in a highly-rated hospital, wouldn’t prescribe me antivirals because she wasn’t aware of any of this research, nor was this approach, to her knowledge, standardized in any way. My hematologist told me the exact same thing, essentially, “I don’t know what they’re doing at Stanford, but I can’t just prescribe something to you because you say some researcher somewhere had some positive results with it.”

So I did find my way to Stanford, after a year of waiting, and a trip that cost (with plane fare) over a thousand dollars. But then this Twitter guy tells me to just go find an MD who practices “evidence-based medicine”? Because it’s that easy? Once I do that, I won’t need these “quacks” anymore?

It’s this kind of arrogance combined with ignorant assumptions that people with chronic conditions have to deal with every single day. Science has not been kind to these sorts of conditions, first mocking the people who presented with them in the first place, then finally deigning to give us a tiny slice of the research pie. That tiny slice has not yielded anywhere near enough treatment options for the nearly 3 million people with CFS.

Thanks, but no thanks. Criticize naturopathy all you want, I don’t care. I don’t take it personally. I’m not invested in naturopaths being seen as valid to anyone, and I’m happy to see pseudoscience take a beating with well-run studies and lots of data. But what I do care about is getting well, and ten years of evidence-based medicine has done absolutely nothing to help, so don’t criticize those of us whose desperation has brought us to something you look down your nose at, and don’t pretend that science has any reliable answers to CFS that are in any way accessible to the masses.

 

 

I’m leaving the Bastyr Center and moving on to a new naturopath

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.

“Um….okay.”

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.

 

Andrographis caused dangerously high blood pressure spikes, and I had to discontinue

It’s been about three weeks since my last post, where I’d shared the success I had with a supplement/medication that my naturopath from Bastyr prescribed. It’s called Andrographis Plus. The “Plus” indicates it isn’t only Andrographis, it’s also Amla and a blend of other herbs. See the images below:

After 22 days on the supplement, I had my first “episode”. All other episodes were the same:

  • Severe headache
  • Severe nausea
  • Severe brain fog
  • Dizziness
  • Double vision
  • High blood pressure

These episodes would last for 60-90 minutes and were debilitating. I would be so nauseous and dizzy that I couldn’t walk around. At first they happened once every three days, but rapidly began to happen every 24 hours, and then twice in a day. My blood pressure is normally 100/60 or 110/70, and has been stable like that my entire adult life. If I have a bad panic attack, it might get to the 140’s/80’s.

During these episodes, my blood pressure was 180’s/90’s. The highest one we caught was 197/94, and we almost took me to the ER. The headache and blood pressure were tightly intertwined. I could always tell when the blood pressure reading would be high by how strongly the headache throbbed.

As I’d been on the Andrographis Plus for three weeks with no issues except feeling awesome, it didn’t occur to me at first that this could be the root of the problem. I thought I had an entirely new problem, which didn’t seem that surprising considering my body appears to be a weird mess of issues all the damn time.

I went to my regular medical doctor, an intelligent, rational person whom I have great respect and fondness for, and explained what was going on. She was obviously concerned and thought it could possibly be POTS. But that didn’t really fit, and then she wondered if it might be a rare pheochromocytoma, an adrenal tumor that can cause episodes of high blood pressure, headache, nausea – basically exactly like what was happening. When I read the symptoms I thought, “Yes! That’s it!”

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A week after noticeable improvements: still doing well

It’s been a week since I began noticing that my body seems to have to regained a bit more energy, and developed the amazing ability to recover a little energy when given rest and food. It’s been a really nice week, I’m so grateful for it! Things remain about the same.

I’ve gotten better at describing what’s happening, and here’s what I’ve been telling my friends and family:

Imagine that my pre-sick me had normal energy, and we gave that energy a number. Let’s call it a 10. Every day I woke up with level 10 energy. If I was really in shape, exercising a lot and getting good nutrition and feeling great, maybe I got 11 or 12 or even 13 (I imagine an Olympic athlete wakes up every day at about a 19 or so), and if I was sick, I might dip down to 8 or even 7. But in general, I was at level 10.

My sick-self, the one that I’ve been living with for the last decade, has been steadily declining. I spent a lot of years at 7 and 8. Those were good years. I could pass for “normal” most of the time. I miss those years, a lot.

In the last couple years I declined to a 5, and more recently, a 4. When I went on the antivirals prescribed for me by the doctor at Stanford, I had the worst fatigue I’ve ever known, and began living most days at level 3. I began to have a couple days a week where I was at level 2. I consider level 1 being a place where I find it hard to get out of bed, so 2 is where I am awake, I might move around the house to use the restroom, but I’m too tired to leave the house and I don’t go outside or talk much, or do anything other than stay horizontal, read, and sleep. At level 2-3, I need my family to help me with making food, getting laundry done, that sort of thing. I’m very low-functioning.

The other issue to all this is recovery. I never had good recovery. If I was at 4, and we went out and did some things, and I got down to a 3, I could lay on the couch for hours and eat a good meal, and I’d creep up to 3.4. Recovery was measured by fractions, if it happened at all. And it never went back up to where I started that day. The rule was always that if I went below what I had that day, it took at least two days to get it back.

It was a week ago, Thursday, July 27th…

…that I noticed a strange uptick in energy, and the ability to recover a little bit of energy once I lost it. Both of these things have been very significant. I’m still sick, but in the last week, here’s what I notice:

  • My general operating level of energy is a solid 5, that I can push to a 6 if I eat really well and get good sleep. Good sleep for me means going to bed around 11pm, and reading until I fall asleep (usually midnight).
  • If I start out at a 5 (or 6! wooo!), and I go out that day and do something, run an errand or otherwise use a lot energy, and drop down to a 3 or 4 (it happens frequently, my stamina is still crappy), I can regain at least 1 point and maybe 2, by laying down and resting, and by eating a good, healthy meal.
  • “Resting” used to mean “sleep as hard as you can for four hours”, but now a rest means, “lay down for 60-90 minutes”. I don’t have to sleep. Frequently I’ll fall asleep, but if I don’t, if I just stay quiet and don’t move and read, the effect seems to be about the same.

I went to the naturopath again this week, and I asked her, “What’s making this happen?”

She said, “Astrographis is the most potent antiviral we have. We were hoping it would attack the epstein-barr virus, and the others.”

I asked what I was really scared to ask. It took a surprising amount of courage to speak. “Will it keep going? Will I just continue to get better until I’m normal?”

She was leaning back in the chair, arms folded across her chest. She looked happy, cheerful even. Her whole face brightened. “That’s our hope,” she said. “But if you plateau, and it seems like it’s not getting better, let us know, and we’ll up the dose.”

I walked out of that appointment feeling stunned. They actually think I can get all the way better? Dare I hope for such a thing? I’ve spent the last year using much precious mental energy to come to terms with being chronically ill. Is there a chance I could someday live as a normal person?

I don’t know, nobody does. But I’m not counting on it yet. I’m so grateful for feeling better right now, but I’ll need more than one good week to change my assumptions and expectations about my body. It isn’t that I’m being pessimistic. I have a lot of hope, but I try to temper that with a lot of reality and the duty I have to myself to make the best of things with what I’ve got.

Avoiding that call to accept reality brought me dangerously close to a serious depression. I spent a couple years declining while simultaneously being very lost in a future fantasy world. I dreamt of sailing around the world, I went to bed every night looking at trip reports and sailing blogs, I dreamt about doing the Race to Alaska and taking my little boat to Mexico. These are all great, beautiful dreams, but they weren’t realistic for me then, nor are they now. It began to hurt, daily, the conflict between the world my head lived in, and the one my body inhabited. I started to feel disconnected, traumatized. I had to come back to the now. It was painful but necessary, and since then I’ve been eeeking out a real happiness based in what’s actually in front of me. I’m still frustrated, I still wish I could finish school, walk a mile, have a job. But at least I’m present, feeling that frustration, instead of burying it in unrealistic fantasies.

Being present doesn’t mean not having hope, though. I have hope that something, someday, might really change things up. It’s that hope that brought me here, to someone new. I’d even tried naturopaths in the past, several times, and gotten nowhere, but I wanted to give Bastyr another shot, and I’m glad that I did. If nothing else, I’m back to my once passionate hobby of herbalism, and I’m loving every moment of that. The plants are carrying me back to myself, and back to nature. Whether or not they can heal me completely, they’re already healing me a lot.