How Carly rebuilt her resilience from ME/CFS and Chronic Lyme

[00:23] Liz: Hey Carly, so good to see you. I’m so glad to be able to interview you today and share your story.  

Carly: Thank you, Liz. I am also very happy to be here. Very excited to talk with you.

[00:37] Liz: So how did you ever find my blog in the beginning, do you remember? 

[00:43] Carly: Yeah. So I was thinking about that just before the interview. I think all that happened was I was just Googling around for recovery stories from ME/CFS because I had received that diagnosis at that point. 

I’d gone through the process already of trying to figure out what it is and realize that no one really knows what it is or what causes it.

And at that point I was just like, “I just need to find people who healed from this, that’s clearly the only path forward.” So that was how I found your website. 

[01:11] Liz: Oh cool, good old Google search. Yeah, that’s awesome. Well, I’m just so grateful you’ve now made it to the other side and are coming back to share hope with others.

So can you just talk a little bit about your life before ME/CFS happened? 

[00:01:31] Carly: Yeah, absolutely. I think primary sort of identifying factor of my life has always been athletics. I’ve always been an endurance athlete, so I was a cross country ski racer for a couple of decades and I was racing post collegiately when I got Lyme disease in 2017 before I landed with chronic fatigue. Standard sort of introduction.

But the primary story of my life before I got sick was athletics, any endurance sports, you name it, I probably was enjoying it. And a lot of travel. 

I was also coaching at that time and that’s what I’ve continued doing since I had to stop racing.

[01:55] Liz: Was that immediately treated, the Lyme disease (in 2017)?

[01:59] Carly: I found the tick. I had a bullseye rash, got antibiotics right away. I mean the four weeks that I was on antibiotics were kind of rocky, but after that I felt like I was fine. Symptoms were mostly gone.

I trained hard for another year, raced for another season after that. But things started kind of falling apart at that point. 

[02:32] Liz: So was it a gradual onset or did something happen like a virus?

Give us a summary. 

[02:40] Carly: It was very gradual. I didn’t connect it to Lyme disease at first at all actually. My coaches and I thought I was over-trained. So that’s unfortunately kind of common issue for all endurance athletes, but particularly at the higher levels when you’re really trying to maximize your performance.

So the initial approach was just to rest. I rested for three weeks, the first round we thought three weeks of rest will be enough. You know, I wasn’t having very serious issues at that point. I just felt flat. I was still racing, so I wasn’t really sick yet, but something wasn’t right.

Something wasn’t clicking. I couldn’t really perform I felt tired all the time, wheels were coming off the bus. So I took a few weeks off, got back into training. Didn’t really feel any better. This was late 2017. 

By early 2018, we knew I had a very serious issue. I was just totally flat in everything. And starting to have some of my first cardiac symptoms. 

The heart stuff was kind of the first thing that really seemed alarming. I was having mostly heart rate suppression, meaning my heart rate couldn’t come up when I was training, but my resting heart rate overnight was jacked way up. So I was low on the high end and high on the low end. And that’s not normal or healthy. 

[03:54] Liz: Yeah, the wheels were falling off the bus. Was there other dysregulation that showed up? Your heart was basically the opposite of what should have been happening. 

[04:03] Carly: Yeah, for sure. My sleep was definitely coming undone a little bit at that point, too. 

I felt tired all the time, but I couldn’t sleep.

I would have a hard time falling asleep. I’d be awake in the middle of the night. I’d wake up really early in the morning. So what I now call wired and tired, 

At the time, I was just like, something’s weird. You know? So those early signs of dysregulation were coming in, in early 2018. 

And at that time my coaches diagnosed me. They’re not doctors, they can’t diagnose, but they said I had overtraining syndrome, which is basically the most extreme version of over-training you can get and typically require six to 12 months of sedentary rest to recover from. 

So that was my initial sentence. 

[04:44] Liz: Interesting, because I’ve heard of over-training syndrome and I know overtraining is one of the common culprits, not probably the most common, but it is one of the culprits of ME/CFS.

A lot of people who were top athletes, I know there was – what are male ballerinas called – ballarino? We might cut this part out, but I know there’s a guy who was at the top of his game in ballet and that’s when he got it.

But I didn’t know there was a protocol for over-training syndrome and that was take a year off. 

[05:22] Carly: Yeah. I mean, I don’t think it’s like a medically established protocol, but my coaches that had experienced with athletes with over-training syndrome before. 

And the idea is that over-training syndrome is primarily caused by oxidative stress sort of damaging cellular components, mitochondria in particular. So essentially everything you’re supposed to do in aerobic endurance training gone just a few steps too far. 

Training always causes breakdown if you don’t recover sufficiently, you end up just in a hole that you can’t recover out of. 

So the body just needs a lot, a lot of time. And that was the theory that six to 12 months of sedentary rest would allow my body to heal its mitochondria. 

[06:04] Liz: Because they can heal, but yeah, it sounds like they were in a rocky place, the mitochondria. What does sedentary rest mean to you, this adventure elite athlete person?

[06:17] Carly: Yeah, it meant sedentary. It wasn’t sedentary with an asterisk. Like you can still ride your bike. It was totally sedentary. So I mean, I was walking but not walking for exercise, just walking as part of get out, get some sun kind of walking. And I moved back across the country at that point to try to get myself into a less stressful environment and just really commit to my six months.

Cause I didn’t want it to be longer than six months. I wanted to really do it right.

For six months I was going to rest. And then I was going to go back to racing. That was the plan. 

I was still healthy enough at that point to be living a reasonably normal life.

I started working a little bit more, and seeing friends, it wasn’t too bad at that point, but yeah, no exercise. Yeah. 

[07:03] Liz: So my idea of sedentary it’s like you’re laying on the couch, but I am not an athlete. So your idea is just taking it easy.

Walking, seeing a friend work, but not. 

[07:15] Carly: Not aerobic exercise. 

[07:17] Liz: Okay. So I’m glad we got that clarified okay. So what happens after the six month mark? 

[07:25] Carly: Yeah. So at the six month mark, I was not in great shape. I had gotten sick presumably with a virus or something, and that was kind of the start of the real problems. 

Up until that time something had been off, but I wouldn’t have called it fatigue, except for, when I was trying to exercise, then I obviously felt the fatigue.

The fatigue really came into my day-to-day life early 2019, when that virus set in. 

After that, I started having a lot of issues where it just seemed like my body was over-reactive. 

I started having the random hives outbreaks, other immune flare ups.

I would get like a sore throat and my lymph nodes would get really swollen. That was a big symptom for me. That kicked off what I always referred to as these cyclical immune activations, where for like maybe one to two, maybe three weeks at a time, I would feel like I was coming down with a cold for like three weeks straight.

And then I would feel okay for a week or so. 

[08:26] Liz: Yeah, it was like the day one of the flu, but it never broke. It was just like the flare and then the wave of tired, crash kind of thing. But it was never… I’m like, “Okay, now where’s the sniffles?” And the rest of the stuff that comes with a flu never came. 

[08:43] Carly: Yeah. exactly. That, that was my experience too. 

[08:47] Liz: And were these immune activations precipitated by anything? 

[08:53] Carly: If there were triggers, I still don’t know what they were. I was wearing a device that monitors my heart rate variability, so I could keep tabs on my nervous system.

And I couldn’t even find a correlation with that. Like sometimes my heart rate variability would be high, which is what you want higher variability during these activations. And that didn’t make any sense to me at all. It just, it was completely nonsensical. 

[09:16] Liz: Yeah. So, did you end up having post exertional crashes where you pushed yourself and then crash or was it all just random? 

[09:25] Carly: Yeah, the post exertional malaise was the symptom that turned me and my doctors on to chronic fatigue because when I hit that six month mark, after I stopped training, I started training again.

That was, that was the deal you rest for six months, and then you’re allowed to exercise again. And it was a nightmare. 

I mean, trying to exercise just felt terrible. Afterward, it would really set me back. It would usually set in the next day. It wasn’t like I would come back in from training and be really tired. 

I usually felt a little bit better immediately after trying to exercise. 

But then the next day, it was like a whole new world of fatigue. 

And that was when I really started to experience the nervous system fatigue, the fatigue that feels there just isn’t usable energy in my body. 

It was nothing like fatigue I had experienced before.

[10:17] Liz: Yeah. It feels like the nervous system or it feels like the cells are just like tired. That’s how I described it. It’s not sleepy tired. It’s like a different level.

[10:26] Carly: Yeah, exactly. 

I mean, I know we’re preaching to the choir with folks that are watching this channel. We don’t need to tell them it’s not like being normal tired. I’ve tried to explain that to so many people. 

It just feels like my cells are not making energy.

[10:46] Liz: Yeah. So okay, you did the six months now you’re starting to exercise though experiencing the post exertional crashes. 

 I’m sure now you’ve started to see doctors and what are they telling you? 

[11:00] Carly: Yeah, I held off for a long time on the doctors because I thought I knew what was wrong with me.

It’s over-training syndrome. It’s just taking a little longer than we expected and it’s taking longer. And now I have these new weird symptoms and just, it just kept going like that. But yeah, I started the medical search in early 2020, which is just the most ironic thing in the world because no one wanted to be in a hospital in March of 2020.

But there I was, because all of a sudden my symptoms, I couldn’t really manage anymore. 

By that point, I had just been in such a state of denial that something was wrong with me, trying to carry on with my life. But by early 2020, it was not something I could continue with.

I was having to cut back on work. I couldn’t socialize, I wasn’t sleeping. I was having all sorts of, new, weird symptoms, the symptom list is long more stuff just kind of kept piling on.

So I went and saw a doctor, I got tested for a bunch of things. 

It was reassuring to know I didn’t have leukemia, but it wasn’t really helpful.

So not a lot there, we turned up a slight vitamin D deficiency and a slight B12 deficiency, but nothing major.

[12:11] Liz: Yeah. Those both are common. I know vitamin D was low for me too, so yeah, I know for some people it might be high, but know people with ME/CFS mostly tend to be on the low side. This could be because our body’s not metabolizing it. It could put us more at risk, too. 

[12:29] Carly: For me one the most revealing parts of the medical search was I saw a rheumatologist who wanted to check me out for autoimmune issues, which made sense. 

A lot of the symptoms I was experiencing were indicative of autoimmune. We couldn’t find anything in the testing.

And he told me that it was clear to him I was developing an autoimmune disorder, but my symptoms are severe enough yet to know which one. So once I had enough symptoms, he would be able to diagnose me. 

And then if it was one that they knew what caused it, maybe they could treat it. And if not, then I would just have to live with it.

Just my head basically exploded. Cause it just felt like, okay, so you want me to develop worse symptoms so that you can give my disease a name?

[13:15] Liz: That’s what happened to me too. somewhat similarly. Similarly, I was telling my doctor – it was a year in – I was like, “I think this is CFS or ME.” And he was like, “CFS is just a waste bucket, but ME is only when you’re bed bound and wheelchair bound. And because you were able to walk in, you’re fine.”

Even though just to get to that appointment, the next 10 days I was on my couch, but because I wasn’t in a wheelchair at that time, it wasn’t anything. So it was like, “I don’t want to have to get to that bad to be recognized.”

But then you realize why did you even need them to recognize you?

Which is probably what you might have realized, too. 

[14:00] Carly: Right? Once they tell you, you have ME/CFS, they tell you, “Well, there’s nothing we can do for you. There’s a 5% chance you’re going to get better, have a nice life!” 

[14:07] Liz: I wasn’t told about the prognosis, but I know the majority of people who are diagnosed are not given much hope. 

So, did you see a specialist who diagnosed you? Was it a regular doctor? 

[14:19] Carly: It was just my general practitioner that eventually tossed out that diagnosis, but we didn’t do anything with it. 

At that point, he was just like, “I have to stick a label on this to keep seeing you, here you go.”

But you know what, at that point it actually was helpful because then I found you.  

Once I had like an umbrella term under which all these symptoms could collect, like “Oh, that makes a ton of sense, let me google ME/CFS.” 

And it’s like, “Oh, look, there’s post exertional malaise. There’s orthostatic intolerance. There’s like all these things that I’m having.”

And that helped in a way. Because then I could start looking for people that healed (from ME/CFS). 

[14:54] Liz: Exactly, Because while the doctors might not have helped us just having a label. Even though I realized I didn’t need it because I should’ve just realized myself… but it’s reassuring because I was going down all these things.

“Oh, leaky gut.” “Maybe I have lymphoma?” was what I thought. “Maybe my digestion is broken.” And so I had a colonoscopy, which set me back. So you do all these things with energy you don’t have, and now it’s like, okay, yeah.

All these crazy symptoms fit under this umbrella. And now at least there’s something to focus on. 

[15:32] Carly: It focuses you. Exactly. Yeah. 

The experience you were just describing of following each individual symptom down all these diagnostic routes, I was banging my head against the wall doing that.

Like I would see all these different doctors, the rheumatologists and gastroenterologists and the oncologist and no one’s seeing me as a whole body. 

And no one thought that my glossitis was related to my constipation, but they totally were.

Liz: What’s glossitis?

Carly: Glossitis is when the taste buds on your tongue sort of dissolve and your tongue gets smooth and slimy and sometimes inflamed.

[16:09] Liz: I had the opposite issue with my tongue. It was like all crazy and weird, versus smooth. I had all these things on it, but yeah, all related. 

[16:18] Carly: Oh, that may be glossitis, too. I’m not sure.

[16:21] Liz: Some of the symptoms, the weird symptoms I actually didn’t even detail on my blog because it was too fresh at the time when I was writing it all out.

But I have most of them out there, I think. 

[16:30] Liz: So you’re now looking for the recovery stories. Did anything resonate with you early on and did you try now that you were looking at the recovery stories and you kind of settled on ME/CFS?

[16:44] Carly: Yeah, pretty much immediately when I started reading recovery stories, which I started at your website, I noticed a common thread through pretty much every story people spoke about their experience as if it had been some sort of a spiritual or energetic process in some way, almost everyone seemed to have this perspective.

Like it was part of a big journey that they were going through.

And I totally feel that that had felt true to me, right from the start. 

Like my body is trying to tell me something that it has probably been trying to tell me for my whole life. This is the opportunity of a lifetime to really heal from the root, if I can just figure out what the root is.

So to see that other people who had healed had also approached it that way, really reassured me that I was on the right track and it solidified my new way of thinking. 

This is not something wrong with my body, this is something that my body needs, this is something adaptive that’s gone unheard or gone into overdrive or something like that.

It changed the whole way I was thinking about what was “wrong” with me. 

[17:53] Liz: Wow. Everyone takes away something different. It’s like Someone might see people ate this. And then the fact that you saw, like the spiritual connection, not everyone’s told me that.

So it’s just like, wow, that’s really powerful that that’s what you took away. And I totally see it now.

[18:10] Carly: 

We see what we want see, I wanted to see this as a spiritual process for me. And that was the thing that gave me the most hope. It gave me the feeling that I can do this.

I signed up for this, and I can do it. And that is probably why I saw that in the stories. 

[18:26] Liz: Yeah. And I bet people got to this point and weren’t necessarily expecting what you just said because you’re this hard-driving athlete. 

I do also feel, my body was trying to tell me something. That doesn’t mean it was my fault. And seeing it as the opportunity of a lifetime.

Liz: Wow. That’s really powerful.

[18:46] Carly: I spent my entire athletic Career fighting with my body. Always trying to make it, do something, make it perform and punishing it when it did not.

It couldn’t have been more obvious to me that my body was done with that. Like no more.

We will not tolerate any more of that. So thankfully I got on board pretty early with the idea that this is going to be a process between me and my body. 

This is not a fight. My body’s not failing me. It’s not fighting against me. This is going to be a learning process and a healing process for us, both me and my body. 

And yeah, that mentality just settled in for me pretty early on in the process. That made everything a lot easier.

[19:25] Liz: Wow. 

[19:26] Liz: So what are modalities that may have supported you and this being a friend to your body. 

[19:36] Carly: Yeah. It took some time to find the good ones. 

Early 2020 was when the shift sort of happened for me, but it was also when I was really starting to have some debilitating symptoms. 

And throughout pretty much the rest of 2020, the only goal was just gentle.

Just be gentle, just slow everything down even more. Take as much work off my plate as I can. Ask for help, which that was a goal of mine, to ask for help.

I didn’t do a very good job of it. It was the middle of a pandemic, and I’m not good at asking for help anyway, but I did from time to time ask for a little bit of help.

You know, I kind of advocated for myself maybe once or twice, could have done more. But my goals were to take care of myself in that way while I looked for other answers, while I tried to start understanding what I could do.

I spent many, many months just learning about the ideas that were coming into my head, splitting my time between trying to understand some of the actual biological cellular mechanisms for what might be going on, but trying to answer the question, “Why, why would my body be doing this?”

“Why is my body not healing itself right now?” “Why is it shutting down its cells?” Trying to educate myself on the nervous system. It took several months of just education. 

I didn’t really even get into tools that started helping until the very end of 2020. So it was like eight or nine months of just learning. 

[21:03] Liz: So are you reading any books or was this just research? 

[21:07] Carly: It was pretty much all online. I read several other books that were not about this problem that were about training theory, I’m always reading books about training, but I was pulling some of the basis for my knowledge of cellular biology, which is limited.

I was pulling from those books. And then I was saying, “Okay, if the cell works in this way, and I think my cell is doing this weird thing,” then I go to Google and say, “Why would it be doing that?” So it was mostly just online, but it took a long time. Cause I was sick. I couldn’t focus.

I had such bad brain fog, and when I would try to type all my letters would come in out of order. I couldn’t write things in the right order. My brain was a mess. So it took several months of just trying to wrap my brain around… 

Like when I look back on it now, I think, “Wow. It took me that long. Just to understand what the nervous system does. Just to learn the name polyvagal theory?”

It took me like eight months just to familiarize myself with these concepts. 

[22:07] Liz: So is that what you settled on? Stuff with the Vagus nerve, polyvagal theory, was that one of the modalities that supported you? 

[22:14] Carly: Yeah, I tried a few different things.

So the first thing that was decidedly helpful for me was I started a breathing technique. It goes by a lot of different names. I refer to it as Wim Hoff breathing, which is probably what people in this day and age would know as it goes back over the millennia, different names. You can learn about that. 

But yeah, I had read about Wim Hoff, I think in Outside magazine like years ago. And I can’t tell you why one morning he just popped into my brain. 

That was the first concrete thing that I did to try to start healing. And it provided immediate relief for the brain fog, I was hooked.

As soon as I tried the Wim Hof breathing, I knew it was getting at something. And then I had some new research material. Cause now I can say, okay, what is Wim Hof breathing changing in my body because it’s making a difference. And that sort of led me into some new things and I could get more work done when brain fog was clear.

So that was a fantastic first step. That was the first concrete thing that I did. 

[00:23:20] Liz: Yeah. That’s so powerful. 

So what is Wim Hof breathing? 

[23:23] Carly: Yeah.

It’s kind of a two-part method. It’s breath work and it’s cold exposure.

So the breathing, it follows a pattern. I’ll show you how it works. You inhale deeply into the belly first and then into the chest. 

So it kind of rolls up your body like a wave, and then you let the air out in a puff, kind of like a passive puff, you just sort of let the pressure, press the air back out.

You don’t have to fully exhale everything. And then you just do that again.

Liz: Are you breathing through your mouth? 

Carly: I’m sort of breathing through both. Wim Hoff says that it doesn’t matter what you breathe through. I am a big believer in nose breathing, but I find that when I’m doing the Wim Hof breathing, I breathe a little harder and faster than nose breathing really allows for.

So I inhale through both. I kind of purse my lips and inhale through both. That’s just my personal strategy. Wim Hoff insists it doesn’t matter. Although I don’t know the research on nose breathing has me thinking otherwise, but yeah. 

Then you do that for 30 or 40 breaths, and then you exhale and you hold your breath on the exhale.

And it sounds like it’s going to be really hard, but it’s actually really comfortable because that hyperventilation is actually getting the carbon dioxide out of your blood. 

And so this is kind of a common misconception about breathing. When you’re holding your breath, that burning sensation you get isn’t a need for oxygen.

It’s a need to expel carbon dioxide. So once you’ve cleared a lot of carbon dioxide out of your bloodstream, you can actually rest in an exhaled state for a really long time. So you usually do three or four rounds. For me personally, on the first round, I might hold my breath for a minute and a half.

But by the fourth round, I might hold it for three minutes on an exhale, which seems insane. But it’s comfortable when you do that kind of breathing technique and then you get in cold water. 

Liz: Three minutes?!

[25:15] Carly: It’s not, it’s not above average. If you follow Wim Hof on social media, you can see other normal people posting their breathing times.

I’m pretty average in that front. 

[00:25:26] Liz: Wow. That’s really interesting. And I’m sure there’s lots of YouTubes about the Wim Hof. 

[25:30] Carly: There’s great stuff on it. There’s been some research. I think probably the most famous, scientific study involved in the Wim Hof method, was when Wim Hoff allowed scientists to inject him with e coli and then he used his breath to control his nervous system.

He claims he can control his own our immune system, I mean, to fight off the infection. And he did, and he got away without any symptoms. And then he trained a group of volunteers to do it, and they did the same thing. So you can find the paper it’s, actual science.

[25:59] Liz: I do think that that’s a cool thing.

I know people who have trained themselves to control their heartbeat so that seems possible. Yeah. That’s really cool. Okay.

[26:09] Liz: So you’ve got the breathing down. Now your mind is more clear. What’s next?

[26:15] Carly: Yep. The next step at that point was a very dear friend of mine recommended what’s called biomagnetic pair therapy. 

She recommended this to me because she, like many other people, was suspicious that I was still suffering from Lyme disease. So this is where Lyme disease rejoins the story.

I had been adamant that it’s not Lyme disease. I was treated with antibiotics. I felt fine afterward. I was very committed to that line of thinking, because I didn’t want to think that it could still be Lyme disease, and I didn’t see how it could be. It seemed to me like took the antibiotics that should take care of it. My doctor had said that would take care of. 

I just didn’t want to question that, but so many people had asked me, “Are you sure it’s not chronic Lyme? Are you sure it’s not chronic Lyme?”

Eventually, I just said, “No, I’m not sure.” 

So my friend, recommended bio magnetics because there was a practitioner in our area who had developed a magnet protocol specifically for treating the symptoms of Lyme disease. So I got an appointment, and I started biomagnetic pair therapy, and that has been responsible for the largest portion of my healing.

I mean, it’s one of many pieces, but it’s the one that holds the biggest slice of the pie for me.

Friendly reminder: Nothing on this blog is medical advice. This blog is independent from any methods shared. We are just sharing our stories.

[27:37] Liz: I’ve never actually heard of this. 

So what do they do? Do they put magnets on you? Can you explain? 

[27:43] Carly: Okay, so biomagnetic pair therapy, or I sometimes just call it bio magnetics or just magnets, is an incredibly not well known type of therapy that combines an element of energy healing with some element of physical manipulation, but we don’t really understand that part. 

The way that it works is I lay down on a table just like a massage table. And the practitioner reads my body’s energy using muscle testing or applied kinesiology, like old fashioned chiropractors.

That’s energy healing. And she asks my body questions about what’s ailing it essentially, and it might be pathogens, or it might be mold, or it might be emotions, or stuck traumas, or that sort of stuff. And then she can ask further questions about what order does the body want to resolve these things in?

And then the magnet placements support the body in healing, whatever it wants to heal first. It’s similar to acupuncture in a sense, because it uses the body’s energy meridians, but yeah, instead of placing needles, they’re placing magnets and all the magnets go on in pairs. That’s why it’s called biomagnetic pair therapy. If there’s one here, there’s a pair of down here that matches it. That’s, how it works. 

So there’s been some speculation that maybe the magnets are actually influencing the pH of localized points on the body. And because pathogens thrive in certain pH levels, maybe we’re effectively chasing these pathogens out of hiding. And then the immune system can deal with them. That’s been speculated. 

There are a couple scientific papers that have looked at the efficacy of bio magnetics, but not really looked at how it works.

So the short answer is we don’t know, it combines some sort of energy healing with some other component. 

It uses muscle testing, and it helps the body heal itself, essentially.

[29:43] Liz: Helping the body heal itself. So how many sessions did you do? 

[29:49] Carly: Yeah, it took quite a long time. 

I started in March 2021. Just last week (February 2022), my practitioner told me that my body says there’s nothing else. We’re done. So the timing for this interview is really quite perfect. I’m going to keep seeing her probably not as frequently, but just to keep making sure things are okay. 

So it took almost a year, 11 months seeing my practitioner once every nine to 10 days ish.

So two or three times a month for about a year. 

[30:23] Liz: That’s amazing. So did the symptoms just slowly resolve or were there powerful experiences after each session? How was it?

[30:33] Carly: Yeah, so for the most part, it was a pretty gradual thing for me.

There were some sessions where I felt like immediate things right after, but usually it was an immediate flare up of symptoms, like a Herx reaction. 

But those weren’t that common and with muscle testing, we were able to pretty much predict them. She was able to ask my body, “Are you going to have a Herx reaction? Are you going to have this symptom,” whatever. So I could kind of be prepared, and it was pretty accurate. 

So that helped a lot, but for the most part, it was quite gradual. 

Note: Nothing on this blog is medical advice. 

[31:05] Carly: At that point, I started in on a lot of other self-healing things that was in the Spring-ish of 2021. That was when I really got into just calming my nervous system.

I got into a bunch of somatics exercises and other forms of breath work to help my system relearn how to regulate.

I was stuck, I think, mostly in sympathetic activation at that point. Not totally sure, but I was trying to teach my nervous system how to get back into parasympathetic.

That involved breathwork, somatics, tapping exercises – like pressure over my eyeballs, tapping on my face, all sorts of stuff like that. 

[31:43] Liz: Was this where polyvagal theory came in? 

[31:47] Carly: Yeah, for sure. So I found a bunch of different, I guess, influencers on social media, Instagram, mostly who were teaching these kinds of exercises and nervous system regulation.

I started visiting some horses to try to co-regulate with them, essentially. 

It was all about nervous system regulation for me for all of 2021 basically. And so that really went right along with biomagnetics and my progression was gradual at that point. 

So there were a few landmark moments, but across the board, I would say it was gradual.

Note: Carly shares what specific modalities she found helpful (and not helpful) on her website carlyoutside.com.

[32:21] Liz: Yeah. Did you have any other personal realizations about your life at this point? 

[32:28] Carly: Yeah, definitely. Pretty early on after I started the biomagnetics, I was building on the realization I’ve had the year before that this was not going to be a fight of me versus my body, but I had still kind of been fighting.

“Okay, then it’s my body and me versus this illness.” And I just was sick of seeing it that way. I didn’t want there to be any fight at all. 

I just wanted to accept it. 

And so I had to come to grips with what acceptance meant, because I didn’t want to resign myself to it, but I did want to accept it. 

I just wanted to feel like I’m okay right here.

[00:33:07] Liz: Yes. This is so powerful, the acceptance and letting go of the fight, because I see people trying some of the nervous system modalities and it not work for them. Even though it might seem like they’re doing more because they’re like, “Oh, I really want to get better. I’m fighting this da na na na nah!” 

But what I see that’s so key is that acceptance first with our bodies. So we’re not in that fight, to allow it to take a breather to heal. Cause we can’t heal when we’re still in that fight stage. 

[33:41] Carly: Yeah, for sure. It’s so hard when you’re not in a state of acceptance to even imagine it.

For me, when I first started conceptualizing acceptance, it felt like, “Oh, if I accept this, I’ll get there quicker!” And that’s not acceptance. That’s just another way of rushing. 

[34:00] Carly: And so I actually have a couple of specific suggestions for how to welcome acceptance, because this is just one of those out there topics that, I can sit here like a guru and say, “You must become an accepting, enlightened being.”

But I actually have some tips for this because my reckoning with acceptance came not through enlightenment. It came through exhaustion. 

[34:19] Liz: Yeah. We’d love to hear them Carly. 

[34:25] Carly: So, all right. 

One of the resources that I’ve found through this process, is a woman by the name of Nicole Sachs and her work is called “The Cure for Chronic Pain.” So that’s her website name and her podcast name. 

Pretty much everything she says about chronic pain applies to chronic fatigue as well. And the way she put it is that the nervous system perceives the gap between where you are and where you want to be as a threat. 

And as soon as I started seeing it that way, 

I realized how all of the focus that I was putting on wanting to be well, wishing I was well, regretting that I wasn’t well, it was just telling my nervous system, “We’re not safe here where we are.

That was the first fundamental shift for me. So I started thinking of myself as safe, where I am, and I started teaching my body. “Hey, you know what, we’re sick right now, but we’re, we’re okay, we’re safe, we’re alive. Things are good.” 

I broke it down to that like most basic “we’re not dying” kind of level to tell my nervous system. “It’s going to be okay.” 

That was my foot in for acceptance, the gap between where you are and where you want to be, nervous system sees that as a threat. “Hey, we’re safe right here. Right where we are.”

[35:40] Liz: That’s so interesting because that really makes sense why some people have issues with the stuff I did, which was future visualizations. 

So I was visualizing myself in the future healthy, and it great because I had already done so much work to tell myself that I was safe, you know, it started off, “you’re not going to die,” but doing this CD about letting go of resistance that I listened to all the time. [Note: Here is a link to it.]

[36:10] Carly: Yeah, absolutely. Yep. So yeah, starting to tell my own nervous system that we are safe right where we are. 

And then the second recommendation I would make is: Understand the difference between acceptance and resignation. 

Resignation kind of means you’re stuck. You’re beaten down, you’re stuck in something you don’t want to be in. 

Acceptance just means that you’re at ease and acceptance does not mean that you’re going to be where you are forever.

Acceptance is a very fluid state. It’s very flexible and dynamic. So acceptance as a state of being at ease right now, it doesn’t mean that you’re going to stay here forever. So those two sort of mental reframes were what helped me really get into that state of acceptance. And honestly, once I got there, I didn’t want to leave.

It took me a long time to get to the state. You were just saying of wanting to visualize the future. And I’m still not. I still don’t really spend very much time envisioning the future that I want. It feels so I feel so safe where I am right now that I don’t even want to think about a different point.

So I’ve taken it pretty deep in that direction. 

[37:18] Liz: I love that you’re in the present moment accepting it, and that’s really beautiful and powerful. Acceptance, not resignation. Love that. 

[37:27] Liz: So yeah, do you consider yourself recovered now?

[37:33] Carly: So the combination of the Wim Hof breathing, the biomagnetics and the host of nervous system exercises I’ve been doing now for the year. Those got me to the point by last October where I was confident that the nervous system level fatigue that had been so crippling was fully resolved. 

And we didn’t really get into a lot of the details of what my symptoms were once they got bad. 

But for context here at this point, I will retroactively go back and say that my symptoms sort of peaked at two different times. 

Once in late 2020, once in early 2021, about six week windows where I was down, mainly couchbound needed help to get up and do things couldn’t really drive, had to cancel some work even more so than I already was.

Those were the two worst moments. And I would say those symptoms were still probably categorized as mild. On the scale of chronic fatigue, maybe moderate, but those were the real nervous system crashes. 

And in between those two crashes, things were better than they were in the crashes, but it was not good.

I couldn’t do very much for myself. 

And by October of last year I knew, “Hey, it’s been a long time since I felt like I can’t do the basic things that I need to do to get through a day. And I don’t feel like I’m at risk of having a crash again.” And so that was when I was able to start adding something in, besides just my baseline.

At that point, it was just, feed yourself, do your work, go to bed. 

And by October of last year I started feeling like, you know what? I could probably do a little more than that. I could probably grocery shop and do another errand on the same day, like, whoa! So things accelerated pretty fast from that point, the nervous system symptoms were kind of the first things to go.

The immune symptoms took a little longer. The nervous system symptoms really felt more black and white. But the immune symptoms, they were just like gradually getting less and less and less for like a year.

And then they would flare up every now and then I would just start to think like, “Oh, maybe I’m done having a sore throat.” And then the next week I’d have the worst sore throat yet. 

You’re climbing the mountain by circling it. There definitely were some relapses for sure.

But on average it helped a lot to look back to like, okay, where was I at four months ago? 

And then I could see that the immune systems indeed were also improving. So to directly answer the question that you asked at this point, I am fully recovered on all of the nervous system fatigue problems that I’d been having, which means I’m able to do pretty much as much as I want in a day of normal life stuff.

I’m back to sleeping a normal amount every night and I actually sleep through the night and I wake up feeling refreshed. 

All of the immune symptoms have completely resolved. 

So hives, canker sores, glossitis, lymph nodes, sore throat, the just general feeling like you’re coming down with a cold sensation, brain fog, headaches, all of that completely 100% resolved. 

[40:10] Carly: The only thing that is still lingering is this fascinating little symptom called air hunger, which is a symptom for me that predates my getting Lyme disease or over-training syndrome or any of the chronic fatigue stuff.

It’s actually a symptom that I didn’t have a name for it for a really long time. And it was always reasonably mild and would really only occur in stressful athletic situations. Coaches went nuts over this for years. 

They thought it was all in my head, and I have a new way now thinking about things that are all in my head, this new framework that I’ve sort of learned through the experience of the last few years. 

That it’s not in my head and that I’m imagining it, but it is a communication issue within my nervous system in my body.

My nervous system is telling my body to express this symptom. And it is, but it’s not something that is physically wrong with me. It’s not something I’m going to be able to fix with a physical manipulation, if that makes sense. 

[41:50] Liz: I think that’s explained well, because there’s a lot of black and white thinking like, “Oh, it’s in your head” or it’s like, “If you even say anything mind related, you’re saying this isn’t real,” but it’s a real thing that’s happening in your nervous system. 

And it’s like a communication issue. That’s sending maybe a danger signal when it really doesn’t need to. 

[42:10] Carly: Yeah. The way I explain it to people is I, ask someone, have you ever gotten a stress headache, or have you ever been nauseous when you’re nervous?

You’re not imagining those symptoms. Like you have a headache, your head hurts. You’re nauseous, you’re vomiting. You’re not imagining that you’re throwing up, like it’s happening. So, it’s something that your brain and your nervous system is telling your body to do. You’re not vomiting because you have a stomach flu. You’re vomiting because you’re nervous because there’s something in your nervous system that’s telling you to vomit. That’s how I explain mind-body.

[42:40] Liz: People definitely seem to understand better when you break it down that way. But when you have such severe scariest symptoms, people feel that you’re diminishing it by comparing it to everyday things like panic or getting sweaty before a speech or something.

[42:59] Carly: Yeah. I really recommend Nicole Sachs’ work if you’re looking into that sort of healing. And the point that you just addressed, she addresses that constantly because people are coming to her with severe debilitating pain. 

She speaks with people who have been in wheelchairs because of their pain. 

She deals with that topic all the time of: “How do you explain the mind-body connection without minimizing very serious debilitating physical symptoms?” 

And, yeah, that’s a wonderful resource for anyone that feels like mind-body healing kind of resonates. 

[43:34] Carly: The air hunger is a fascinating sort of situation for me. Just the other day, I was out walking, telling one of my biomagnetic friends, how frustrated I was with this symptom. 

And I just had this realization. This is exactly the same thing as every other time I’ve ever resisted a symptom ever. I get so afraid of it. And this is the one that remains because it’s the one that matters the most.

It’s the one that’s been with me,my whole athletic career. It’s the one that has limited my athletic career. The most that’s caused coaches heads to explode. This is the one that has the highest stakes. Of course, it’s the last one. 

And it’s made me realize I don’t need anything new to resolve this.

I just need the same tools I’ve been using all along. 

This air hunger is my body talking to me. 

It wants to know I love it. I am not mad at it. I’m not fighting against it. I can accept this. I can accept the air hunger. I can thank it. 

I can call in these tools of gratitude, and acceptance, and just peace, and not fear it.

I don’t have to fear it, and I’m confident that’s how I’m going to eventually work through it.

[44:51] Liz: Wow, yeah. So it sounds like you’re living life and acceptance in a new way.

You’re no longer trying to fighting against her body anymore. Can you describe what your life looks like, in terms of your physical activity and your outlook on that and how it’s changed?

[45:14] Carly: Yeah, for sure. My day-to-day life is changing pretty rapidly. If we’d had this interview a month ago, things would have been pretty different from how they are now because I’m healing quickly. 

So, you know, a day in the life of the last week, let’s say, looks like what I would feel is a fairly normal kind of day.

I get up and walk the dog, I currently am watching someone else’s dog. But there’s that. And you know, maybe every other day I have some sort of aerobic exercise.

Sometimes it’s an aggressive walk. Most of the time, it’s a light run or a ski, it’s winter now. So I’ve been teaching a lot of ski lessons, which is nice because I am moving and under motion, but not at high exertion. 

[Note: Interview recorded February 2022.]

[45:56] Liz: Where are you located? 

[45:57] Carly: I’m currently in Vermont right now.

[45:58] Liz: Maybe you could teach me how to be better at seeing 

They’re showing those videos on Instagram of this four year old who’s 10 times better at skiing and snowboarding than me. There was now a two-year-old skiing. And I’m getting all these videos of these tiny toddler skiiers.

[46:16] Carly: It’s a lot easier to learn as a little kid than it is. 

[46:19] Liz: I know. Yeah. But it’s still something I want to, pursue. I can do like an easy blue, but yeah. 

[46:27] Carly: Oh, I don’t teach downhill skiing. I only teach cross country skiing. 

[46:30] Liz: Laughs.

[46:27] Carly: Oh, that’s totally different. But yeah, that’s comprising a lot of my exercise right now, it’s getting me out there and it’s re-introducing my body to exercise in a safe way and in a social way, a different way than, you know, training has usually been.

I’m still more careful with higher stress stuff, which includes exercise. I am back to exercising, but carefully. I not exercising in any sort of intense way. You know, I’m walking things back on days that I don’t feel good. 

I’m aggressively protective of my sleep. I’m still very religious about my breath work and my other nervous system exercises.

So the phase that I’m in right now is like, we’re 90% of the way there, but we’re still working on some of the residual symptoms and more than anything my body’s just, it needs some time to get used to not being sick. It needs some time to understand that it’s able to regulate itself and that it’s not full of pathogens anymore.

And it’s going to take some adjustment, but yeah, I’m in a really nice workable state, but I am planning on continuing to go up and up from here. Yeah. 

[47:42] Liz: But it sounds like you have that great foundation, because I remember I had sought increases and then I kind of let the stuff go that was supporting my nervous system.

Cause I’m like, “I just need to keep chasing this!” And I got in super shape for me, Liz. I was like swimming, and walking, and the elliptical, and then I had stopped the stuff that was supporting my nervous system. 

And I had a setback, and so I got back on the horse, but it’s nice to have those rituals that you do that are grounding and calming for the nervous system.

I mean, maybe in the future, it might be doing less of it, but it’s still nice to have some of those supportive practices, especially as you’re increasing things. 

[48:25] Carly: Very much so, it feels like… 

Being in a good nervous system maintenance habit feels like being in a good sleep routine or being on an eating schedule that works for you.

It just feels better. It doesn’t feel like a chore, “Oh, I have to do my breath work.” I want to do it. It feels good. And I feel so much better when I do. 

And I have had plenty of days over the last couple of months where I’ve let it slide. Cause I don’t need to be as strict about it as I was in the past.

And as I continue to heal. Yeah, like you just said, it won’t have to hold such prominence in my routine anymore. It can just sort of settle into being like my sleep routine or my eating routine or anything else that I do, to take care of myself, my nervous system care. They’ll just get worked into the day.

[See below a recent photo of Carly after a 3.5 hour cross country ski with her buddies and another of her hiking in Arizona.]

[49:07] Liz: Yeah.

[49:08] Carly: You know, just kind of as needed, like there will come a time more nervous system regulation isn’t doing anything more for me. Cause I’m regulated, you know? 

[49:18] Liz: Yeah.

But I think having a little bit of that stuff is good because there’s things in life that will happen, And you want to have that nervous system resilience, too. It’s just like, it can’t hurt. 

[49:31] Carly: I like to throw crap at you and having something to support your own resiliency.

That’s what it’s all about. 

For me, this health crisis was all about a lack of resiliency. That was why I didn’t recover when we thought it was just over-training syndrome.

 Everyone was asking, why is Carly not recovered? The answer is a failure of resiliency. so this whole process has been about rebuilding my resiliency.

[49:55] Liz: Yes, exactly. It sounds like you have a new aspect in wisdom to share with the athletes these days. 

So are you sharing them this knowledge to help them train?

[50:07] Carly: That manifest in two ways. 

In the strictly coaching sense? I think my athletes would tell you, I am pretty maniacal about recovery. I really push recovery on my athletes. 

If there’s a question of, should we train more or should we rest more? We should rest more.

I don’t even need to know what the situation is. The answer it’s resting.

So I’m really, really enthusiastic about recovery because that was my whole issue with over-training for a lot of my athletic career, even before overtraining became the name of the issue.

Just always pushing a little too hard, not realizing that, hey, the body’s only gonna get stronger from this stress, the training stimuli *if* we recover. The stress breaks down the body, the recovery is what allows the body to get stronger from that stress on that applies to all forms of stress, not just to training.

So in the strictly coaching arena, yes. My athletes hear a lot about recovery, whether they know that it’s coming from my personal experience or not depends on how much they’ve decided to learn about me. So some of them don’t know why I go on about this, I’m sure. And others probably know my story at this point, so they might understand.

But then there’s the whole other side of sharing this story. Speaking about me, not speaking about how I work with my athletes…

Speaking about myself and my experience and putting out information, like we’re doing right here, so that other people who need this information can see it and can pick and choose what they need. 

[51:38] Liz: I know there are people watching this that are going to find something from this interview.

It’s going to be different the next person, where they’re going to find what they need to hear. 

[51:51] Carly: Yeah, exactly. I mean, coaching works like that, too. Over the years, I’ve worked with a dozen coaches probably more. And sometimes you just need to hear someone say it in a slightly different way.

Like people are mainly saying the same things or, you know, in the case of this kind of recovery, people are sometimes saying the same things, but throwing out new things, too, and then everyone can kind of pick and choose what works for them. 

So at this point I feel like one of my main goals is to just speak about what I experienced and what I did that got me out of it, and yeah, just put it all out there so people can take what they need. 

[52:26] Liz: Yeah. Wow. Currently, this is such a powerful interview. Thank you for putting yourself out there and sharing your story. Not everyone does. 

[52:34] Liz: So, do you have any final takeaways?

[52:37] Carly: I think we covered the major turning points I mean, so much of it is how you see your experience.

And, I was lucky tofind a lot of examples of people, people seeing their symptoms as something constructive that could be worked with and not such a fight. 

Yeah. The acceptance thing is just the thing I keep coming back to. 

If you’re having really serious symptoms, the body does not feel like that safe place. It feels like it’s ruining your life. 

It’s about saying. This is what I am feeling right now. It’s this profound knowledge that this is what I feel. It’s what I feel physically. It’s how I feel about it emotionally. This is how I feel. That is the fact just acknowledging that fact and saying there it is. I feel it. I feel it. I feel it. I feel it. 

Sometimes the body just needs to know it’s being heard that, that generates a powerful feeling of safety for me to just say, “I hear you. This is how you feel.”

[53:44] Liz: I love that. Yes, and I did a little of this too, even though I did a program about redirecting symptoms and stuff, in a way, I did a lot of this, too. 

But of course our stories are unique, and it’s just anytime I hear recovery story, it just makes me learn something about my own story a little bit better.

[54:07] Carly: Yeah. So it sounds like the way that you learned how to think about your symptoms was different from how I’ve chosen to think about my symptoms.

So we got to the same place in the end.

[54:18] Liz: We got to the same place in the end. 

[54:21] Carly: Yeah.

[54:22] Liz: This was so powerful, Carly and I am just, I don’t even want to say cheering you on because I’m just so happy of exactly where you are and thanks for shining your light yeah. 

[54:36] Carly: Thanks. Yeah. You know what cheering me on is welcome for sure. I’m definitely at that phase where, you know, I said earlier that I enjoy my state of acceptance so much that I’ve been reluctant to think about the future, but I’ve definitely moved into a phase where thinking about the future is inspiring.

And this is actually a message I would really like for people to be able to hear. 

I strongly believe that I’m going to be able to thrive athletically in ways that I’ve never been able to access before I got sick. I think I’m going to be a stronger athlete after this. And I have a long way to go up to that point. You know, after my nervous system gets used to being well again, and I can start really exercising again. 

There are many layers to this, but there were ways that I was blocking my body from thriving before this experience, because I was so scared all the time. So scared of performance and the pressure and so angry at my body so much of the time. And that is such a vastly different state from the state I live in now.

So it goes back to what I said at the beginning about feeling like this is a humongous opportunity. I think I’m going to be stronger after this than I’ve ever been before. 

[00:55:57] Liz: I love that. Oh my gosh. This has just given me all warm fuzzies. 

And so Carly, is there a way that people watching this can learn more about your story or contact you?

[00:56:08] Carly: Yes, absolutely. Pretty much everything we just talked about is written up in more detail on my website, which is carlyoutside.com.

So everything that I’ve talked about here is on there. 

And then there’s more stuff on there that we didn’t talk about today. And also, I list a bunch of the places that I like got these ideas from. Like through this interview, I mentioned Nicole Sachs and some other influencers on social media that offered me some of the programs or information about biomagnetics, where you can find practitioners.  

All of that’s there, and then you can contact me there, too. I also have a whole section on my website of stuff that didn’t work for me or stuff that I didn’t try to.

[57:00] Liz: This was so great, Carly! Have a good rest of your day. 

[57:03] Carly: Yeah. Thank you so much, Liz. This has been great.

[57:06] Liz: Bye!