Tag Archives: chronic fatigue syndrom

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.

 

The last four days I’ve been…IMPROVING?!? Best birthday present ever!

I’m experiencing something I can’t explain, but it’s magical and marvelous and I’m grateful for it every hour that it sticks around. It started on Thursday the 28th, four days ago. Greg and Beth and I went to Costco for a household run. I really figured it would take all the energy I had that day, but when we arrived, I was surprised that I didn’t feel the need to use one of their offered electric scooters. I wasn’t trying to be stoic. I checked in with my body, and it felt pretty clear that I had enough energy to walk around for an hour or so, which would hopefully be as long as it took. I decided to just walk, see how it felt, and then go grab a scooter if I needed one. As it turns out, I didn’t need one. I was a little surprised but thought eh, sometimes the universe gives me a good energy day. I just got lucky.

Friday, I had very little to do except save up my energy for our friends arriving that night. And yet for some reason, I was just itching to hang up my yoga trapeze. It sounds more acrobatic than it is; the only thing I bought it for was to be able to gently hang upside down, which is great for the spine. I bought this a few months ago because most of my pain is in my lower back and spine, and I figured it might help. For some reason I just got the fire in my belly to hang it up on Friday, and I would not be stopped. I went to our little local hardware store, bought bolts, came home, and spent an hour drilling holes and using my Grandpa’s old ratchet set to bolt this swing to a large archway outside our bedroom. I would get a bolt partway in, get exhausted, and have to go lay on our bed for a few minutes. Then I’d get up and go back to it. I kept telling myself this was stupid, I was just draining myself of everything I had. Yet, for some reason, when I rested, I actually felt a little better. So I’d keep going. Finally, the swing was up. My daughter and I tested it, it seems really fun! I’ll update the back-pain-vs-yoga-trapeze topic later, after I’ve had a chance to see if it helps at all.

Later that night, our friends Lisa and Todd and their daughter arrived, and I was actually awake and functioning okay. But I figured the next day would be hard, I’d probably be crashing. I felt good Friday night, but it seemed inevitable that I’d be on the couch the next day.

Saturday we all woke up, and I…..made everyone sourdough pancakes.

Then……THIS HAPPENED:

Best birthday weekend ever!! #birthday #sailing #flicka20 #pugetsound #spoonielife

A post shared by Sewbi-Wan Kenobi (@sewbiwan) on

 

I honestly don’t know how to explain it. I was standing in the kitchen for a good hour making food. That alone is usually completely impossible. But then I still had some energy when that was done, and I knew I should be smart about this, and Greg and I talked about saving up all my energy for friends coming over that night to celebrate my birthday, but I just felt like SOMETHING WAS HAPPENING, and I wanted to take advantage of it. So I said, “Hell, let’s just burn up every spoon I have. LET’S GO SAILING.” So we did! Holy CRAP! WE WENT SAILING!!!

Okay, well, we sort of went motoring, since there was no wind. We put up the main and jib, but eventually took the jib down and just putted around the Sound with the main up, trying to catch gusts.

And here I have to stop just for a second…

…and thank two new friends and wonderful people: Al and Kristi! I’m writing today about the miracle of being out on the boat, but the hidden miracle holding that trip up is that the boat RUNS. My Honda outboard, as you may remember, was out of commission for weeks. I have a large, heavy outboard engine, and it needed to come off the boat to go to the mechanic. Problem was, I didn’t know how to remove it. It’s not as simple as “lift the engine off the boat, carry it to the car,” as some folks thought. There are wires, fuel lines, battery cables, transmission cables, lots of stuff going to the engine from the boat. Greg and I spent two afternoons down at the dock trying to figure it out, and we eventually agreed that we just didn’t know enough. If we started pulling random stuff off, we could really damage things.

Well, after a lot of calling around and getting nowhere, I was really at the end of my rope. I posted about this to a local sailing list, and that’s when Al stepped in to save the day. He and Kristi live aboard their boat, and they actually motored over to our marina, got a slip for the night, just to spend the day helping me out. And he did it! I don’t know why I was so shocked, Al knows what he’s doing, but still it just blew my mind when he managed to get all the wires out and pull the engine off. Kristi and I talked and talked, and we all just hit it off. I had so much fun with them. They came with me to drive the Honda to the mechanic, and then we went to lunch. We had such a nice time! Two months later, I’d gotten the engine back on, but it wasn’t hooked up yet. We’d made iPad videos of Al removing things so that I could put it all back together myself, but I was sick, and exhausted, and stuff just kept coming up, and frankly I was nervous to do it. So, they came over a second time, and helped me out. We had another nice afternoon at the dock, and then went to dinner. I am so, so, so grateful to them! Thanks, you guys! HUGS!

Back to Saturday’s adventure……

I was at the helm nearly the entire time. A good 2+ hours we spent out there, and I held the tiller the whole time except for a few minutes Greg took over. We saw two dolphins, one seal, a few logs, and a lot of other sailboats using their engine. It was a gorgeous day, sunny but not too hot, and the whole time I kept checking in with myself to see if I was really doing this. Am I really okay? Is this actually happening? I was surreptitiously trying to check my hands to see if they were shaking – a sign of rapid crashing coming on. They never shoke. I never felt like I was going to crash.

I steered us to the dock, we tied her up, and I thought, “Okay, now it will happen.” I was really, really tired. There was no doubting that. But it felt like a normal sort of tired. Like I was a fatigued person who did something tiring. This is different than my usual state, where I feel like someone with some kind of broken internal engine just did something that broke it further.

My doctor at Stanford told me that CFS is a mitochondrial problem. “The mitochondria don’t work correctly,” he said. “It’s why you feel so weak all the time.” I think back to biology class, I remember drawing a picture of a cell and naming the organelles. I remember the mitochondria because they were my favorite thing to draw. “The little powerhouses,” I was told. Where our energy comes from, where ATP is synthesized. And even though you can’t see a cell with the naked eye, sometimes I’m sure I can feel every cell I have. It’s like I can feel every mitochondrion, giving up, a hundred times a day. I can tell when they try to rally. I can tell when they have miraculously figured things out for an hour or two (that’s when I get laundry done), and I can tell when they all slow to a crawl and send out a distress signal (that’s when I lay down for a couple hours).

But yesterday, it felt like the mitochondria were weary, but not broken. I can’t explain this feeling better than that. I know it sounds vague and odd, but it’s very real. My sense of it was borne out when we got home, and then I felt a little crash-y. I thought, “Oooookay, here we go….”, but once I started eating a little food…..holy crap…..I felt better. I don’t know how emphatically I can express that this is not how things usually go. Usually, food is nice and my body obviously appreciates it, but food won’t fix a crash or help the pain. It doesn’t make that internal engine be not-broken. It will give me just enough energy to curl up in a ball and lay there for a few hours, while my body slooooooowly, sloooooowly, slooooooowly tries to replenish one or two spoons. If I’m very lucky, I can get a couple back, but I have to be careful not to move too much. Greg and I have an entire routine for this. We get my pillow, my water bottle, my turtle quilt, my iPad, my purse. I lay on the couch, he tucks me in. My corgi waits for this whole process to be done and then he leaps onto the couch and curls up behind my legs. And then no one bothers me while I read a book or listen to a meditation for a couple hours, willing myself to get well, quietly pushing the anxiety away.

And that’s just how things go normally; it’s much worse when I’m very sick. And lately, I’ve been very sick.

Today we all got up, had some food, and then I suggested (I know, I know, why am I the person always suggesting things? Shouldn’t I be resting? Screw rest, I’m going to take advantage of this….) that we all go to the Farmer’s Market a mile away. So we piled in the car, drove down there, and walked around for….two hours or so. I still don’t…I can’t even…what the hell? HOW WAS THIS POSSIBLE? By the time we got back to the car, I was in so much pain trying to sit down that Todd actually got back out of the car to help me close my door, because it hurt too much to lean out and grab the handle. So yeah, I was hurting, a lot. But what I’m trying to say is there is a difference between being really tired and in pain, and being broken. With the first you can bounce back under the right circumstances. With the second, you can’t bounce back, you can just slowly inch your way back to your broken baseline.

These last few days, it feels like I’m very weak and not in shape, and I’m getting over-tired, and I still have this pain problem…..BUT, that by some big of magic, my little internal engines aren’t broken. I hesitate to write, “not broken anymore” because I don’t know if that’s true. All I know is, they don’t seem broken the last few days. They feel like they’re working again. It feels this way because when I rest and eat, I actually feel better. This is stunning, this is so unexpected, this is so different than the awful deterioration of the last ten years.

So what….the heck….is happening?

Here are the things I’m doing now that are new:

  1. Since I saw my naturopath at Bastyr two weeks ago, I’ve been taking an herbal supplement she gave me, called Andrographis Plus.
  2. I’m drinking lemon balm infusion every single day (on her recommendation), that I make myself. This is usually about 30-40 ounces a day.
  3. In that infusion, I’m also adding 4-5 dropper-fulls a day of Holy Basil tincture. This wasn’t my naturopath’s idea, I read about Holy Basil in a book about adaptogens, and decided to try it.

That’s it.

Oh, well, at Costco we got these little mini frozen tacos that I heat up in the air fryer. I’m addicted to those. I joked today that “maybe it’s the little mini tacos!”.  Anything is possible, I guess.

I have a lot of questions, and zero answers.

  • Is this really happening? After four days, I think I can say with confidence, “Yes, it’s happening.”
  • Will it last? Who knows.
  • Is it because of the herbs? Occam’s razor suggests yes, but I can’t be sure.
  • Will it get even better than this? If, every day, I can recover just a spoon or two more than I did the day before, does that eventually mean that I will recover all my spoons? Could I eventually be….cured? Who knows.
  • Is this just a wonderful “up” phase of my illness? Yeah, that’s very possible. People with fibro and chronic fatigue syndrome have “remissions” for periods of time. It happens. They often get sick again. I’ve never had a remission, I’ve had a very steady decline over the last decade. So, for me, this feels miraculous, and I want, I WANT SO BAD to believe that it won’t ever slide back again, that I’ll just keep climbing out. I can’t know whether that’s true, though. I just can’t know.

I don’t know what’s happening, but I’m so grateful for it. Today has been amazing. That trip to the Farmer’s Market should have knocked me out all day. But I came home, I rested for an hour or so, I ate food, and I felt better. Shut the front door! I have done laundry today, I actually cleaned a few things up, I loaded the dishwasher, I did some yoga. I mean, crap, it was almost a normal day. Almost. My energy isn’t normal, but if normal is 100%, I’m at about 50% right now. A normal daily energy level for me is around 20%-30%, sometimes less if I’m traveling or have lost sleep.

It was the best birthday present I could have possibly had. Thanks, universe. Please let me keep it, please, please, please.