Can massage and bodywork help with long-term Lyme Disease? The answer has implications for working with similar conditions such as long COVID, post-viral syndromes, and more. Til Luchau talks it through with pathology writer Ruth Werner.

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Full Transcript (click me!)

The Thinking Practitioner Podcast:
Episode 73: Long Term Lyme Disease: What Helps? (with Ruth Werner)

Whitney Lowe:

Welcome to The Thinking Practitioner Podcast.

Til Luchau:

A podcast where we dig into the fascinating issues, conditions and quandaries in the massage and manual therapy world today.

Whitney Lowe:

I'm Whitney Lowe.

Til Luchau:

And I'm Til Luchau. Welcome to The Thinking Practitioner.

Whitney Lowe:

Welcome to The Thinking Practitioner.

Til Luchau:

The Thinking Practitioner Podcast is supported by ABMP, Associated Bodywork & Massage Professionals. ABMP membership gives professional practitioners like you, a package including individual liability insurance, free continuing education and quick reference apps, online scheduling and payments with PocketSuite and much more. ABMP's CE courses, podcast, and Massage and Bodywork Magazine always feature expert voices and new perspectives in the profession including Whitney Lowe who's not here with us today, myself Til Luchau and my guest, Ruth Werner, who's right here.

Ruth Werner:

Hey, Til.

Til Luchau:

Hey, Ruth. Thinking Practitioner listeners can save on joining ABMP at abmp.com/thinking. Ruth, we are here. I'm visiting you. We are parked out in your driveway, in my camper. Your neighbor is like weed whacking or something over there. So there's like little sounds drifting in, but it's such a good place to be with you. Good place in time.

Ruth Werner:

It's lovely to be here. We would be in the house, but our two dogs have completely fallen in love and they're just rumpusing, and growling, and yipping and having a fabulous time, so we thought we would give them the run of the house.

Til Luchau:

You've been an amazing host. We've surrounded the house, the dogs. And now we're out here in the driveway having a podcast conversation about... You don't need any introduction at all, but maybe we should say something about who you are. You have your own podcast.

Ruth Werner:

Yes.

Til Luchau:

I Have a Client Who. It's also co-sponsored and run by ABMP.

Ruth Werner:

Yeah. It comes out under the ABMP podcasting umbrella.

Til Luchau:

Yep.

Ruth Werner:

It comes out every Friday.

Til Luchau:

You are the author of...

Ruth Werner:

A Massage Therapists Guide to Pathology, now in its seventh edition, published by Books of Discovery, our Boulder friends.

Til Luchau:

Who is our closing sponsor for today ironically enough.

Ruth Werner:

Right on.

Til Luchau:

Yeah. Anything else you want people to know about you?

Ruth Werner:

I write the pathology column for Massage and Body Work Magazine.

Til Luchau:

Which is where I saw this article I want to talk about. Anything else?

Ruth Werner:

Continuing education provider. I have a few classes online, self-paced classes that are available through my website at ruthwarner.com.

Til Luchau:

Okay. We'll put that in the show notes.

Ruth Werner:

Great.

Til Luchau:

So I wanted to talk to you about your most recent article in the July, August 2022 edition of Massage and Body Work. You called it Long-Term Lyme Disease: Controversies and Challenges. I always love reading your stuff because you really do your homework. You really do a great job of weaving together the key things that people need to know in the manual therapy context, in a balanced way, I think. I always learned something too. I learned something from your article.

Til Luchau:

Even though I considered myself a very serious student of this topic, because in my case, I had long-term Lyme disease and really dove into that as both a personal and professional journey. So it was great to see your take on it. And for me, this was 20 years ago. So to get caught up and to have a chance to talk to you about it today here.

Ruth Werner:

Yeah. And you and I have been chatting about this a little bit. If I had known ahead of time that you were a person who'd had chronic Lyme, I would have requested your input and helped to broaden my perspective. But as it was, I worked with a woman that I know who has been living with this and she was sort of our focal point or our introduction to what it's like to live with this problem.

Til Luchau:

Yeah. Can we talk about her? You called her Rosie, not her real name. What was she dealing with that got you so interested? Or what story did you want to tell about her?

Ruth Werner:

Well, Rosie is actually the daughter of some very dear friends. So I happened to mention that I was working on an article on chronic Lyme to my friend and he said, "Oh my daughter had that. Here, talk to her about that." She had a very compelling story that captured a lot of what ends up being a highly controversial topic. She was really on the receiving end of that, which turns out you were as well.

Til Luchau:

Yeah. A lot of that was my story, but what made her story controversial?

Ruth Werner:

Well, what happened for her is she had a tick bite, which she didn't realize at the moment. Couple of weeks later, some number of weeks later developed some very alarming symptoms. Her heart rate was very low. She felt really sick. She couldn't have any energy. She went to her doctor who found no rash and consequently did not-

Til Luchau:

Consider Lyme disease.

Ruth Werner:

... consider Lyme disease or prescribe the typical early and effective two week dose of doxycycline. She continued to get worse in very, very alarming ways and pursued all kinds of medical avenues, but testing for Lyme diseases as I'm sure we'll get to is not reliable. It doesn't give us really good information about... It will tell whether someone's been exposed to Lyme, but not when. And so if you had [inaudible 00:05:48] Lyme... If you had a tick bite it and got Borrelia when you were 10 and had virtually no symptoms, and now you're 30, there's no way to tell whether that what state you're in.

Til Luchau:

That's right. This statistic is years old, but something like one person in 20 in endemic areas like Connecticut test positive for Lyme antibodies.

Ruth Werner:

Oh, that's fascinating. That doesn't surprise me at all because not everybody has a really obvious or serious interaction with this infection. But another success story is that if people recognize that they have been bit by a tick, bitten by a tick, early intervention with antibiotics is for the vast majority of people really, really, really effective. And I did read recently, I didn't read the article, just the headline that there's a new vaccine in phase three trials. Awesome, yes. So we may have some more options soon.

Til Luchau:

But anyway, so Rosie's story was similar to mine. She didn't catch it right away. She didn't know what it was and she got all kinds of symptoms.

Ruth Werner:

She had to quit her job. She basically lived on her parents' couch for two years and pursued diagnoses through the Mayo Clinic and all kinds of fancy places where they assumed she had an eating disorder. They assumed she had chronic fatigue. No one was willing to say, "Gosh, looks like Lyme disease." And she ended up finding a doctor who was willing, without having examined her, which is something that I still get angry about.

Til Luchau:

Doesn't sound so good.

Ruth Werner:

Prescribing, very high dose and very long term antibiotics. So high dose that her pharmacist didn't want to fill the prescription, and so harsh on her that she literally at one point sat down to discuss her funeral plans with her mother because she was so disabled by this course of antibiotics. And that doctor ended up being under investigation and losing his license and all that. But that's it. Something changed for her.

Til Luchau:

At the same time after doing that.

Ruth Werner:

Yeah, at the same time as she was finishing her treatment. And so was it causation or was it correlation? Hard to say, but nothing else had done made any change for her.

Til Luchau:

Her Lyme Symptoms got better after that crazy round of antibiotics perhaps, yeah.

Ruth Werner:

She's now highly functional. She has a beautiful job. She started her family. I actually saw her a couple of weeks ago.

Til Luchau:

Oh, nice.

Ruth Werner:

She's doing very, very well. She has some lingering effects. Her heart rate has never really returned to normal. She has some digestive issues. x

Til Luchau:

Interesting.

Ruth Werner:

That could be related either to the antibiotics or to Lyme.

Til Luchau:

For sure.

Ruth Werner:

We don't know.

Til Luchau:

Yeah. It could be either one.

Ruth Werner:

But she's no longer disabled.

Til Luchau:

Parallel to my story in that I got a pretty clear diagnosis. I didn't have that struggle, which is a big struggle for a lot of people who are even figuring out what's going on. I knew I got bit by a tick. I knew I got the rash. I knew it was Lyme disease. It did respond initially to antibiotics. And then when I would stop the antibiotics, it would get worse again.

Ruth Werner:

So when you started your antibiotics, when in relation to tick bites?

Til Luchau:

Three months after the bite?

Ruth Werner:

You may have missed that earliest window of opportunity because you were traveling. Right?

Til Luchau:

I was traveling. I got it while I was traveling and teaching in Africa, South Africa, I got the tick bite. It got better. I ignored it. The rash that came later, I attributed to traveling in hot countries and the waistband in my pants. By the time I got to Switzerland, I realized, "Okay, this is persistent. I need to get this checked out." And that was three months later.

Til Luchau:

So no, I didn't catch it as early as I would've liked to. I did give a positive Western blot, which showed, again, not it was current or past, but I had Lyme going on as a factor. The antibiotics did make it better for me, but like I said, only while I was taking them and not completely. They reduced the symptoms by maybe 50%.

Ruth Werner:

Can you talk about those symptoms?

Til Luchau:

Headaches, body aches. It was like having the flu. It's the first couple days of a flu where everything just aches in your skin. It's painful.

Ruth Werner:

Do you have inflamed lymph nodes?

Til Luchau:

Sometimes, yep. Not huge, but they were sometimes tender or a little swollen.

Ruth Werner:

Did you have fever?

Til Luchau:

No, not a fever.

Ruth Werner:

And it just went on and on and on?

Til Luchau:

It would persist. It would cycle throughout the day. There were, I mean, other symptoms too like the brain fog, just the cognitive impairment. And emotionality is the other one. Just I would be so emotionally sensitive to any sort of friction or irritation.

Ruth Werner:

You're talking about emotional friction. Emotional irritation?

Til Luchau:

Emotional friction, emotional like between me and my partner or me and my son. I had a baby kid there or me and my colleagues, or my work commitments, those kinds of things. I would just be devastated by the smallest little disagreements, and that was really hard too.

Ruth Werner:

That's interesting. I mean, that sort of emotional liability did not turn up in what I ran across and Rosie didn't report it. I think that was something unique.

Til Luchau:

Maybe unique to me. It was very recognizable because it would really come and go with the symptoms. Some of that is just a result of being sick, I'm sure of being in pain. But it was almost like this particular mood I could feel come in.

Ruth Werner:

Isn't that fascinating?

Til Luchau:

Yeah.

Ruth Werner:

Yeah.

Til Luchau:

Anyway, those were my-

Ruth Werner:

I'm sorry that you had to go through that.

Til Luchau:

Well, thank you. I mean, it sucked.

Ruth Werner:

And so you were doing antibiotics. About how long were you... I mean, I know that it was sort of cyclical, right?

Til Luchau:

Yeah.

Ruth Werner:

You sort of did it as needed.

Til Luchau:

I did it most of three years.

Ruth Werner:

Wow.

Til Luchau:

Most of three years.

Ruth Werner:

That must have done a number on your gut too?

Til Luchau:

I was scared straight by my... I reached out to people, reached out to the Lyme community that was online, got to know people, talked to them and heard a lot of horror stories like Rosie in your article of people who had been doing this high dose antibiotic therapy and had Candida issues, yeast overgrowth, had digestive problems that were worse than the Lyme disease. And so I was really super careful with my diet. This was before keto and everything, but I went zero carbs and I just did everything I could to control for those sorts of things. I was under the care of a pretty good naturopath.

Ruth Werner:

Oh, that's good.

Til Luchau:

Around the dietary stuff. I made taking long-term antibiotics, my medical project. I was like my own experimental case because it was helping me. In Rosie's case, we don't know. But in my case, it was pretty clear that if I take the antibiotics, the symptoms got better. If I stopped them, the symptoms got worse.

Ruth Werner:

And 20 years ago, this was French. This was a French treatment.

Til Luchau:

Totally.

Ruth Werner:

Even for Rosie who went through this more recently, I think for her, it was more like 10 years ago. She ended up sort of going under the table, if you like to a doctor who was all kinds of unethical.

Til Luchau:

Yeah. Well, I mean, just for context, it didn't even get a name until the '80s. And this was the end of the '90s, beginning of 2000s that I had it, everything was French. They didn't know anything. And the CDC was just coming out with guidance even after I'd started my treatment. It was still emerging at that point. So we didn't know what mainstream was or what French was. People were trying things that seem to be working. That's the only thing that was out there. But no, you're right. That has emerged as a non-approved treatment to take that much antibiotics for that.

Ruth Werner:

And there's a couple of good reasons for that. I'm not saying that your experience didn't happen or that Rosie's experience didn't happen. They did. But that needs to be done with the knowledge that large scale testing of these kinds of treatment protocols doesn't show reliable benefit and it does show substantial risk of harm.

Til Luchau:

Yeah. And so if you average it over the populations, we haven't been able to see that long term antibiotic use improves that average groups of [inaudible 00:14:11].

Ruth Werner:

What I learned from this, which came up in the article is that the most effective treatments for people who are having symptoms of what we'll call long-term Lyme disease is to treat it by the individual, not in terms of what large scale research says, but what seems to work for this person and without hurting them.

Til Luchau:

Those are the recommendations. You mentioned your article that have emerged like a combination of things of support in different ways that are tailored or customized to the person.

Ruth Werner:

The customization is absolutely key.

Til Luchau:

Yeah. Which in my case was a trial and error process.

Ruth Werner:

Oh, it has to be for everybody, of course.

Til Luchau:

Yeah. I just basically tried everything and I would try to keep it focused so that I could see the results from this. Did this really help? Because when you're trying multiple treatments, you don't always know if it's better or worse.

Ruth Werner:

Especially if you're trying them all at the same time because you want to get better.

Til Luchau:

Because you just do anything and do everything.

Ruth Werner:

Yeah. I went through one summer in Utah when my cough was first becoming a real problem. And I had a trio of friends who were all practicing in the same office. So I went for treatments every week and I got acupuncture and craniosacral work and special chiropractic. And my cough got substantially better. I have no idea which of those was the thing that worked because I just wanted to figure. I just wanted to get on top of my cough. And that sounds like that's something similar to what you were doing. You were just throwing the kitchen sink at it.

Til Luchau:

Well, it evolved over the years. Three years was long enough to throw everything at it and then back off. "Okay, let me try this one at a time. Let me consult with it." But I was doing the Mayo Clinic thing. I was traveling around. I was looking up, Spear, the guy that discovered or designed the treatments. I had a couple of specialists, including one really delightful human being who was the regional Lyme disease specialist who heard my story in detail, had me keep a symptom log, really took time to understand it. And at the end of the conversation says, "It sounds like you know more about this than we do perhaps. Let me log you to PubMed here and let you look. I'm going to see another client in the next room. Take some time, see what you can find here on my computer, in my office and let's talk about it."

Ruth Werner:

I mean, it's validating for you, but it's [inaudible 00:16:38] going to erode a little bit of faith in your healthcare provider.

Til Luchau:

A regional expert in Lyme disease and he's saying we don't have no idea what to do. What can you find that we can talk about?

Ruth Werner:

Right. It's kind of nice to hear that kind of humility and maybe we can talk a little bit about the controversies and the conflicts that are happening in the medical community around-

Til Luchau:

Let's talk about it.

Ruth Werner:

... around that.

Til Luchau:

Yeah.

Ruth Werner:

Because it's not that doctors don't want to help. It's that they want to help in a way that is likely to get good results. And chronic Lyme is really hard to demonstrate because we don't know. And it looks like a lot of different things and a Lyme disease test doesn't actually yield very useful information. And once let's say we establish it, then what? We don't have great treatment options that are going to be reliable and it's much harder to customize treatments than it is to say, "Oh, you have an ear infection. Here's your Cipro or whatever."

Til Luchau:

It's hard to pin down. It appears in many different ways for different people. It mimics or looks like other kinds of conditions. And if it isn't obvious yet to the readers, we should mention, this is a lot like long COVID situations or post viral syndromes or a lot of these things that are being spoken about. You mentioned that in your article too that these same sorts of...

Ruth Werner:

So this would be a post-bacterial syndrome.

Til Luchau:

Post-bacterial?

Ruth Werner:

Post-infection. So we have a slew of these. We have chronic fatigue syndrome, which in some cases, at least is a post-infectious thing. We have long COVID, long Lyme, post sepsis syndrome and they all have a lot in common in terms of fatigue and malaise and brain fog and resistance to treatment. And so...

Til Luchau:

Multi-causal, multi-symptomatic.

Ruth Werner:

Multifactorial.

Til Luchau:

Yep.

Ruth Werner:

And a lot of times the people who are living with these conditions and in fact, I have a friend right now who has both chronic Lyme and long COVID.

Til Luchau:

Wow.

Ruth Werner:

It's awesome.

Til Luchau:

So to speak.

Ruth Werner:

So these people often feel more or less abandoned by the medical community, taken advantage of or-

Til Luchau:

Dismissed.

Ruth Werner:

... gaslighted or dismissed or not believed. And a lot of times those are the people who come to us and we might be a first resort. Often we are a last resort. It requires some sensitivity and maybe some suspension of judgment when we have people who are living with these chronic diseases or chronic challenges, especially if their treatment options are things that we are not great, not crazy about. It's not our call.

Til Luchau:

Right. Here's an interesting phenomenon. And your article makes this point. There's so much we can do just by really listening, believing people's story and working with what they present us. In my case, ironically enough, well, I saw dozens, if not over a hundred different practitioners during those three years. I could pretty clearly map them out on a curve of their openness to my experience. And it was an inverse proportion to their conventionality in the medical system. Meaning the most conventional doctors were the most open-minded.

Ruth Werner:

Oh, that's nice to hear.

Til Luchau:

And the most alternative were the most certain and clear that everything else I was doing was harming me and a waste of my time, and I shouldn't be doing it, which was not a helpful message especially as presented by some of them in particular cases. I mean, the scoffing, turning their head like, "Oh my God." Slapping their forehead when they heard other treatments I was making when I was in a desperate place.

Ruth Werner:

So disrespectful.

Til Luchau:

Well, unconscious about the impact of that as we learn more about the placebo and placebo relationships and the power of the context. They were demonstrating that they didn't approve of my other treatment choices, and probably with the best of intentions, trying to steer me toward what they thought would help, but their style, but also their certainty and closed attitude toward other stuff ended up not being helpful for me.

Ruth Werner:

That makes me so sad to hear. And also happily surprised that conventional healthcare providers... I don't know why I'm surprised about that, but that more conventional, in terms of being medically mainstream, more open-minded and largely because we got nothing.

Til Luchau:

We got nothing. So I mentioned the doctor, the specialist who turned his computer around and let me just dig into whatever he could find. The other guy was an infectious disease specialist, the lead guy in Denver, finally, got an appointment after waiting two months. Similar, heard my story and basically said, "We got nothing. But how is this for you emotionally?" He was the first-

Ruth Werner:

Nice.

Til Luchau:

Yeah. He was the first guy to ask that.

Ruth Werner:

Wow. Good for him.

Til Luchau:

I nearly start crying, talking about him now, because that was the impact at the time. Of course, all could do is listen and says, "Would you like me to write you a script for antidepressants?" Which I didn't need, but can be helpful in those kind of situations too.

Ruth Werner:

Absolutely. Oh, they totally can because when depression gets layered on top of chronic things, the chronic things become harder to treat your symptoms.

Til Luchau:

That's right.

Ruth Werner:

I'm glad that he did that. I'm really glad. And I'm not suggesting that massage therapists should ask, "How has this affected you emotionally?"

Til Luchau:

Nice.

Ruth Werner:

Right? It's not a can of worms that we're qualified to open.

Til Luchau:

Yeah. Opening the can is one thing. Listening to what comes out is another.

Ruth Werner:

Yes.

Til Luchau:

It really is helpful to be heard and listened to. And to understand too that what we offer, it touches opening a can.

Ruth Werner:

That's true.

Til Luchau:

In a sense.

Ruth Werner:

But that's a little different-

Til Luchau:

Than asking.

Ruth Werner:

... from probing. Right?

Til Luchau:

Yeah.

Ruth Werner:

So I want to talk a little bit about your experiences with massage while you were going through all this?

Til Luchau:

Well, off like I told you about going to a practitioner that I'd seen before I got Lyme and mentioning, I said, "I got Lyme disease. It's been a real bummer. I can't seem to kick it. And my back really hurts. Can I get some work?" And he was taken back a little bit. He says, "Oh, Lyme disease. What do you want me to do about that?" He thought I was coming to him to ask him to fix my Lyme essentially and-

Ruth Werner:

Flush it out.

Til Luchau:

Flush it out or whatever. And I had to educate him a little bit and says, "No, it's my back that hurts. You were really good with my back. Can you help my back?" And he goes, "Oh, okay. Yeah, let's try that."

Ruth Werner:

Right.

Til Luchau:

But he had to do about three disclaimers too. It's like, "I don't know if this is going to help your Lyme or not." It's like, "Yeah, of course. Just help my back please."

Ruth Werner:

Right. He was able with your help to identify what your goals were?

Til Luchau:

Yeah.

Ruth Werner:

Right? I think you disclosing that you had Lyme was a useful thing for him to know, because it adds context to his understanding of you and your experience.

Til Luchau:

Right.

Ruth Werner:

But your Lyme was not the reason you showed up. You showed up because you had pain.

Til Luchau:

That's right.

Ruth Werner:

And as a teacher of pathology or someone who wants massage therapists to feel confident about understanding the impact of various diseases or conditions for their clients who are coming because they have back pain or because they have fatigue or whatever, the responsibility of your practitioner was to know enough about Lyme disease to not hurt you, to not do something that's going to make something worse.

Til Luchau:

Which in this case... It wasn't the case for me, but things to be careful of would be pressure, pacing, duration, the kind of things that we can overwork someone with either an acute injury or an inflammatory condition.

Ruth Werner:

I remember a lot of times with Lyme because they thought it was a form of arthritis. They thought it was a form of rheumatoid arthritis for a while. So a lot of people with late stage Lyme have really painful inflammation of the large joints and that's something you don't want to make worse.

Til Luchau:

Right. And there are stories that people... Lyme being flared up by two aggressive of manual therapy. Certainly, when it crosses over with fibromyalgia type tender points and things like that, which it often does and did some for me. You want to be careful with that. You listed that as the main danger of massage therapy along with being dismissive of our client's experience, which I also experienced.

Ruth Werner:

Yeah. That frustrates me. And that's something that I really found with Rosie as well is so many of the people that she looked to for help told her that she was wrong about her problem that she-

Til Luchau:

Couldn't do that.

Ruth Werner:

... didn't understand it, that she had an eating disorder, that she had chronic fatigue. And they were very dismissive. And that's what led her to seek out this weird doctor who almost killed her, but also probably... I mean, I'll go out on a limb and say, "Yeah, it's correlation." I'm open-minded to it also being causation that this course of antibiotics did something for her that eventually helped her tear in the corner.

Til Luchau:

Yeah.

Ruth Werner:

I'm glad that she didn't die because of it.

Til Luchau:

Yeah, me too. I'm glad that I didn't end up with worse complications from three years antibiotics, but there's people that people are desperate in that case. I knew people that were giving themselves malaria because the fever that was thought would cook out the [inaudible 00:26:54] or they would do bee stings on their painful joints. They put little basket of bees.

Ruth Werner:

Apitherapy.

Til Luchau:

Yeah. To try to make their sore joints better. So people are desperate for things that'll help them and they're willing to sacrifice part of their health to improve the rest of it. And that's a tricky spot to be in.

Ruth Werner:

It is a tricky spot to be in and as massage therapist, if we have a client who we're worried about that we have a legitimate concern that they are making choices about their healthcare that are not in their best interest. It's a very tricky line because it's not appropriate to say I think that's a really bad idea. It is appropriate maybe to say, "If you would like to pursue another option, here's a trusted name."

Til Luchau:

Nice, nice.

Ruth Werner:

But that's really all that we can do.

Til Luchau:

Yes.

Ruth Werner:

It would be the worst breach of codes of ethics and scope of practice and standard of care to say, "I think your doctor's not trustworthy."

Til Luchau:

Absolutely. Which is the message I was getting mostly from my alternative practitioners about the conventional treatments.

Ruth Werner:

And 20 years ago is not that long ago.

Til Luchau:

No.

Ruth Werner:

Right?

Til Luchau:

Right.

Ruth Werner:

We know as a profession, we had woken up enough to understand a little more about appropriate scope of practice and that-

Til Luchau:

And the value of being interested in someone's experience that's validating patient choices and those kinds of things. Just the healing nature of that, and the way the Therapeutic Alliance is built on that, and not only making the correct medical choice in a way.

Ruth Werner:

So let's talk a little bit about validating the patient experience. When I asked myself this question for writing this article, what is the best role for the massage therapist here? Again, we're not going to fix Lyme. What we might be able to do is provide some relief, probably temporary, almost certainly temporary relief from many of the challenges that people with chronic Lyme disease live with.

Til Luchau:

Which ain't nothing.

Ruth Werner:

Which ain't nothing, right? It's important. The question is... Let me reframe this. The point is to treat the person, not the disease.

Til Luchau:

Yeah.

Ruth Werner:

Right? And so your therapist who said, "Well, Lyme disease, what am I supposed to do with Lyme disease?" Took some coaching from you to say, "No, no, no. I don't need you to treat the Lyme disease. I need you to help me with my back." And my experience in teaching pathology because that's the filter that I come through is that if a massage therapist knows their client is living or dealing with some condition that becomes the whole point and focus of their massage." And it's often not what the client is looking for.

Til Luchau:

That's right.

Ruth Werner:

Right?

Til Luchau:

Exactly. And we can really dial it down to those things that are disturbing the client and use those as the entry points to see what we can do that actually is appropriate and helpful for those things. There's a lot we can do there.

Ruth Werner:

Right. With understanding enough about the disease or the condition to not hurt them.

Til Luchau:

Yeah. I mean, let's talk about the ending of your article, where I was acknowledging your difficulty as a writer to talk about the problems and the things we should be aware of and not get lost in the morass of what to do about it because there's so many different treatment approaches and how that is the morass where I live. I teach people techniques and things to do, but you walk that line where you're trying to help us be aware of it, but stopping short of saying, "Here's what you should do." For good reasons.

Ruth Werner:

Yeah. I am not a technique teacher. I will never be one. I know that there's such a broad way. The term massage is an enormous umbrella.

Til Luchau:

Yeah.

Ruth Werner:

That encompasses anything from structural integration to cranial sacral to manual lymphatic drainage.

Til Luchau:

Right. Which... Yes.

Ruth Werner:

For me to say, this is indicated, or this is contraindicated is ridiculous. All I can point out is here are some really good things that could happen if you're skilled and sensitive and compassionate.

Til Luchau:

Here's some things to keep in mind.

Ruth Werner:

And here are some bad things that can happen if you're not skilled or paying attention or compassionate.

Til Luchau:

Lovely.

Ruth Werner:

And from there, it's up to minimize those risks and maximize those benefits. Til will teach you some ways that you might be able to do that.

Til Luchau:

Well, yeah. I know-

Ruth Werner:

Not necessarily in the context of Lyme, but...

Til Luchau:

No, I will, if you want, but I can see why you don't do that in your articles. It's also the trap that I fall into, is it depends. In the end it depends.

Ruth Werner:

It always depends.

Til Luchau:

And it always depends. It always does. And the more we get into it, the more we realize the variables have to be addressed. And we can't just say do this. And yet I wanted you to say a little more, do this at the end of your article, because you're about-

Ruth Werner:

Sorry.

Til Luchau:

Yeah, I know. We talked about it, but you finish beautifully. You say your fourth step and your critical thinking protocol consider possible strategies and alternatives. In this step, we need to survey our own experience in history with similar situations. This is also a time to see what other healthcare providers suggest for patients with similar goals. This of course is where research literacy becomes important and you're saving us a step. You say you go on PubMed and sure enough, there's nothing there with chronic Lyme disease and massage, or PTLDS and massage. And Google Scholar has very limited information. Lots of material about Lyme disease, but little or nothing about issues in the context of massage therapy.

Til Luchau:

And then you go on the next point, unfortunately, because that's where I want to say, even still, even though that there's not much note about massage and Lyme disease, there's a lot we know about massage and backaches. There's a lot we know about massage and headaches. There's a lot we know about massage and anxiety, or depression, or discouragement.

Ruth Werner:

And where I got caught there and you have caught me is conflating is doing exactly what I was discouraging people from doing a minute ago is saying, "Well, you have Lyme disease. Therefore, Lyme disease is all I need to learn about in order to help you."

Til Luchau:

You weren't saying this, but worse, "Since there's not much known about it, there's not much I can do."

Ruth Werner:

Oh, okay. Yeah, and I didn't go in that direction. Okay.

Til Luchau:

But it could set someone up to have a takeaway.

Ruth Werner:

Yeah. That's absolutely true. And so I will be more conscientious about that in the future because as we said, we're not there to treat Lyme disease, we're there to work with the person and what they want to accomplish today whether it's, "Please help me with my back pain," or whether it's, "Please help me with my fatigue," or "I just don't want to feel like a fragile flower. Give me an hour where I can feel good."

Til Luchau:

Something that feels okay in my body, please for a change... I mean...

Ruth Werner:

That's a lot more than nothing. That's really, really powerful and impactful.

Til Luchau:

I would count down the hours and minutes to my appointments.

Ruth Werner:

Oh, nice.

Til Luchau:

Even making an appointment was a huge feat. If I could do one thing a day and it was make an appointment, sometimes that was all I could accomplish in a day. And then it was counting down the time until that appointment, until that blessed hour or whatever would start. So there were just precious oasis in this desert of discomfort and pain.

Ruth Werner:

That's beautiful to hear. I'm so glad that you had that experience. And I think we always need to remember that pain relief, fatigue relief, it might be the difference between someone feeling like they can live with this condition and someone not feeling like they can live with this condition.

Til Luchau:

There's a place I can go where I don't feel as bad. And that meant a lot.

Ruth Werner:

Yeah.

Til Luchau:

That meant a whole lot. That got me through it really. I mean body work was a major resource for me in that time and I couldn't get enough of it. And the amount that I got really, really helped. It didn't fix the Lyme, I don't think in a direct way, but it was one of the most important things I did.

Ruth Werner:

So just for the sake of our listeners who I'm sure are wondering, are you okay? Can you talk a little bit about your transition from feeling sick, to feeling not sick?

Til Luchau:

Well, yeah, I'm good. I'm actually really good. There was three years of being really bad and nothing I would do to get rid of it. The antibiotics would keep it controlled, but not get rid of it. I stopped working for quite a period of time. I consulted lots of specialists, did everything I could. And then at some point it was escalating even with the antibiotics. The next treatment option that was given to me was a central line with IV antibiotics that I'd go in for daily, just to try to keep it controlled.

Ruth Werner:

Yah. And this was probably not a mainstream practitioner.

Til Luchau:

This was with mainstream practitioners.

Ruth Werner:

Oh, really? Wow.

Til Luchau:

This was before the CDC really started calling this quackery. This was regular doctors who were saying, "We're seeing results with this. It's all we got. Let's try it." And you're a case for that because you're intractable.

Ruth Werner:

You are intractable.

Til Luchau:

Anyway, it was the doctor. One of the doctors who said, he said, "How you doing with the antibiotics?" "Actually I'm feeling worse even with the antibiotics." "Okay. Let's try this. Before we do this next step, let's try zero antibiotics. And if you don't feel worse, why do we keep giving antibiotics?" If you feel bad, either way, why add the antibiotics out of the mix? And so I stopped the antibiotics, did not feel worse. In fact, after a month or two started to get gradually better. And then my symptoms continued to improve, so that now and today, I have zero symptoms. I'm all better.

Ruth Werner:

Yay for that doctor.

Til Luchau:

Yeah. So in hindsight, who knows how much the antibiotics were part of that malaise. They were very clearly keeping the symptoms controlled at some point in the process. And then my theory now is perhaps the reservoirs were all depleted, if there were reservoirs of the organisms. And I was having an immunological reaction to either the antibiotics themselves or probably to the former damage the organs have had done to my immune system and over time that got to settle out and I got better.

Ruth Werner:

And that sounds essentially like what happened for Rosie, the person I interviewed for the article. She weaned off the antibiotics and slowly found herself again.

Til Luchau:

Yeah. That's what I didn't do it. I didn't do any more antibiotics, but I did do all the other health practices that I had to do to survive. I got really serious about my sleep, about my exercise, about my emotional wellbeing, about my diet. All those things got ratcheted up to the next level. And I think certainly part of supporting me, but are the gifts as well as the attitudes about wellness, what that means about being sick really well as a possible outcome.

Ruth Werner:

I'm glad you brought that up. Can you say a little bit more about being sick really well?

Til Luchau:

There was the point when I couldn't do anything at all to feel better, nothing I could take, nothing I could do, conventional alternative, whatever helped at all. And I realized my only... Since I couldn't be well, my only option was to be sick really well.

Ruth Werner:

What does that mean?

Til Luchau:

That means to take it really seriously, to really acknowledge to myself that I can't live like a well person. I had to stop working. I had to put the needs of my body and my health first if it meant stopping a conversation and going long down for a nap because I couldn't sleep at night. So if I had could sleep in the day, then I had to take advantage of that moment. A hundred ways putting it into practice just like to say take the disease seriously and respond to its demands.

Ruth Werner:

That's a tricky thing to take your challenge seriously without deciding, "Okay. Well, this is who I am now."

Til Luchau:

Yeah. I had to undecide-

Ruth Werner:

Do you know what I mean?

Til Luchau:

I had to give up who I was before because of what I was doing. I'm a powerhouse guy. I got this work I do that helps people. I can keep doing it. Even if I'm sick, I can just be present in my illness. I worked with that for a while. But in the end I had to say, "No, I'm not that guy anymore. I can't say no to this chance to sleep and be okay," for example. But you're talking about going the other way and deciding that I was a sick person and that I couldn't find a way to be okay without that identity as well.

Ruth Werner:

Yeah. I think that's a phenomenon that's very understandable. It's super human. I mean, it's very human. It's not super human. It's very, very human for people, especially people who are living with chronic illness and chronic pain to just have their identity become entangled with that experience, to the point where it becomes really, really hard to give that up.

Til Luchau:

We can sense that or imagine that in our clients who just need to tell us their story in exquisite detail and who aren't particularly open to other ideas, or we can start to imagine that there's an identity or a story.

Ruth Werner:

It just feels like they're married to it.

Til Luchau:

It becomes who we are in the new things. But it all probably involves being fluid in that attachment we have because I had to let go of my previous well person identity. And then when I did start to get better, I really had to realize, "Wow, I don't have to go back to that. There's a bunch of stuff that I got relieved of in life that I don't want to take on again." I'm pushing myself that hard, for example, or doing things I really want to do. I mean, didn't need the "I'm too sick to go to school" card not to have to do those things anymore.

Ruth Werner:

Right. You don't have to play the sick card to say, "Yeah, no, I don't want to do that."

Til Luchau:

That's right.

Ruth Werner:

Good for you.

Til Luchau:

Exactly.

Ruth Werner:

Wow, what a painful long, but fruitful learning experience.

Til Luchau:

It turned out that way. But thank you for listening. Anyway, thank you for your article. I just got to say, I probably gushed even more before we started the recording, just about how you really did hit the important things people need to know. You captured the essence of what I've told in my story and made people aware of that as well as updating me and the rest of us on the landscape of the medical legal situation there and the ways people are being missed by the medical system and helped and how the care we need to have around that.

Ruth Werner:

Thank you. Thank you very much. I really appreciate it. And I really also really appreciate you're catching me on that, don't let the lack of published evidence stop you from doing your work thing. When we talk about evidence and important practice, sometimes there's not a lot of research in which case we fall back on our experience and the client's values, and what they want to accomplish that we can help them with that is safe. So I really appreciate that and I will be much more mindful of that.

Til Luchau:

No, I appreciate that. We talk about treating the person, not the-

Ruth Werner:

Not the disease.

Til Luchau:

Not the disease.

Ruth Werner:

Not the diagnosis. Not the test.

Til Luchau:

Right. And that has so many implications. It means looking for ways that we can help with that person right now sitting in our practice room. And there's usually so many ways.

Ruth Werner:

Yeah. Isn't that great?

Til Luchau:

Yeah. Thank you.

Ruth Werner:

Thank you, Til.

Til Luchau:

All right. Our closing sponsor is Books of Discovery who has been a part of the massage therapy education world for over 20 years. Thousands of schools around the world teach with their textbooks, including one of yours.

Ruth Werner:

Yes.

Til Luchau:

Yes, Ruth. E-textbooks and digital resources in these trying times. This beloved publisher is dedicated to helping educators with online friendly, digital resources that make instruction easier and more effective in the classroom or virtually. Books of Discovery likes to say learning adventures start here. They see that same spirit here on The Thinking Practitioner Podcast and they're proud to support our work knowing we share the mission to bring the Massage and Body Work community in livening content that advances our profession. Check out their collection of E-textbooks and digital learning resources for pathology, kinesiology, anatomy, and physiology at booksofdiscovery.com where Thinking Practitioner listeners save 15% by entering THINKING at checkout.

Til Luchau:

Thanks to all of our sponsors. Stop by our site for show notes, transcripts and extras. Whitney's site. Whitney will be back with us in a future episode. Whitney's site is academyofclinicalmassage.com. My site, advancedtrainings.com. We'll put the links to Ruth's really great article, her book, her podcast, everything else she wants. Her home study course is there as well. If there's questions or things you want to hear us talk about, email us at info@thethinkingpractitioner.com. Look for us on social media, just under our names, Whitney Lowe, Til Luchau.

Til Luchau:

Rate on Apple Podcasts. That helps other people find the show. And you can hear us on Spotify, Stitcher, Google Podcasts, or wherever else you listen. And please do share the word and tell a friend. Ruth, thank you for this friendly conversation. Thank you for the visit and thank you for this time.

Ruth Werner:

Thank you, Til. It's been a joy.

 

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