Episode Transcript
[00:00:00]
Jill Brook: Hello fellow POTS patients and fabulous people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we are interviewing Dr. Katinka Van der Merwe about neurologic pain syndromes such as those associated with POTS, EDS, hypermobility syndromes, Chronic Regional Pain Syndrome, Fibromyalgia, and all that other POTS comorbidity stuff that we know and don't love.
Dr. Katinka Van der Merwe is a doctor of chiropractic medicine, born in South Africa, but now she is in Arkansas, USA, where she runs the Spero Clinic, which specializes in offering hope to people with often underdiagnosed or dismissed pain syndromes. And she recently published her second book, which focuses on how to heal the nervous system to treat chronic pain.
And her book is called, A Paradigm Shift in the Treatment of EDS / POTS. Dr. Van der Merwe, thank you so much for joining us today.[00:01:00]
Dr. Katinka Van der Merwe: Thank you for having me.
Jill Brook: Do you like to be called Dr. Katinka or Dr. Van der Merwe?
Dr. Katinka Van der Merwe: You know what, I'm going to make it very easy and you can just go with Dr. K.
Jill Brook: Okay, perfect. I noticed that all your patients call you Dr. K. So for starters, can you just tell us a bit more about you and your professional background and how you became interested in working with this community of complex patients?
Dr. Katinka Van der Merwe: Yes, so, my father was a chiropractor and he was very successful, but he always said it's not the 9 out of 10 patients that you helped that you constantly think about, it's that 1 out of 10 that you couldn't help. And that is the philosophy he raised me with this drive to help patients that have nowhere else to go, the unicorns.
Jill Brook: That's great. That's great. We don't usually think of ourselves as unicorns, so that's a nicer way to think of our uniqueness.
Dr. Katinka Van der Merwe: I know I get, I [00:02:00] get a lot of zebras, but I do have patients come in that say, you know, I just don't, my body doesn't react like other patients' bodies, and no one understands my issues, and it doesn't make sense to normal doctors. So they really feel, that they don't fit with other patient populations and I think that is a very common and very isolating feeling in this patient population.
Jill Brook: Yeah, for sure. And it sounds like you have decided to kind of zero in on the neurological pain that's associated with a lot of it. Can you talk about that? Like, what is neurological pain and, you know, anything else you want to kind of tell us about that?
Dr. Katinka Van der Merwe: So, we really want patients to have better quality lives and your quality of life is not just affected by pain. It's also affected by, as you know, POTS symptoms and you know, some [00:03:00] other symptoms associated with, with EDS such as joint instability. But pain is a driving factor for my program because relocating to Arkansas for 14 or 15 weeks and paying out of pocket for this care, requires a very big motivational factor and that factor usually ends up being neurologic pain.
Neuropathic pain is any pain involving the central nervous system, which can be a little deceiving because any pain involves nerves, right, by definition, but you have acute pain that makes sense, you know I had an injury or I had surgery and so it's normal that I have pain, but then you have the chronic pain, pain that just carries on week after week, month after month, year after year.
Jill Brook: Can I ask, sometimes it's hard for us to figure out which pain is productive, [00:04:00] like it's telling us we need to do something different, versus pain that is not productive and it does not need to be listened to. And I guess my question is, is all chronic pain unproductive or is there something that we need to do to figure out when we should listen to it and when we should just try to like get rid of it or ignore it.
Dr. Katinka Van der Merwe: That is a very good question with somewhat of a complicated answer, but if I would sum it up, I would say, personally, I think, all pain is a cry for help. And no pain should just be accepted without a constant drive and a goal to overall help the body improve in its holistic health, so that that pain can be driven down.
I, I'm very loathe to accept suffering and I've built a career on that and I have this [00:05:00] kind of maverick attitude that all pain should be attacked, all pain should be driven down so that humans can get a good quality life back. Even if you do have genetic conditions, it's not always a life sentence.
You can do a lot to improve your circumstances, and your symptoms.
Jill Brook: So a lot of our listeners have not just POTS or EDS but they have some of the less common comorbidities also, and the one that's in my mind right now is Chronic Regional Pain Syndrome. And I know that you specialize in treating that, right? Can you, can you talk a minute about what that is? Because I don't even know, I just know it's like something's hurting a lot and they don't know why, right?
How do you think about it?
Dr. Katinka Van der Merwe: Right? So complex regional pain syndrome is this very little known condition that most people only find out about once they [00:06:00] have it. And then it takes a very long time to figure out what it is. I always say if, if you could design a hell on earth condition, CRPS would be it. So in a nutshell, patient has an injury, can be a small injury, they twisted an ankle or a big one that got knee surgery, but it's some kind of injury that should only result in self limiting pain.
That is, you have it for a few days or weeks, pain gets better and better, and then you're healthy again. Instead, that whole trajectory is reversed. Patient wakes up with burning, searing pain, as if they're being burnt with a blowtorch. And then the doctor will say, that doesn't make sense, but let's give you more pain medication.
And perhaps they're thinking, Gosh, this patient is kind of a baby, you know? This doesn't, this doesn't compute. The pain goes up and up and up and up. And then you may have some visual [00:07:00] manifestations. The limb may be cold or hot. You may have swelling, it could turn red. You could have blisters show up.
And the creepiest part is, it will switch to other body parts. Most often, more often than not, most people don't know that it spreads, but I've treated more than a thousand patients with CRPS and I know that it's more common for it to spread. That is CRPS. Now, in that same family of the strange, creepy, neurologic pain conditions, you could also put some other things in.
So, Amplified Pain Syndrome, where the patient has full body pain and just switches. They're very sensitive to touch as well is another condition that would go in that group. Also Trigeminal Neuralgia, I feel it's more like CRPS in the face. Occipital [00:08:00] Neuralgia can be put in that same basket.
And now we're seeing a lot of post COVID patients, especially the pediatric population, and they usually have POTS and EDS, and then they get long COVID, and it results in this horrific neurologic pain that doesn't go away.
Jill Brook: Wow, yikes. Okay, so I know that a lot of like quote unquote normal doctors will think that like Gabapentin is the answer and that maybe the patients are babies. How do you think about this kind of pain? Like, what kinds of things do you think are involved if it's not just that the patient is a baby? Ha ha ha.
Dr. Katinka Van der Merwe: Look, any pain medication is not solving the problem at hand. And so this is a very simple example, but if you wake up in the middle of the night and your [00:09:00] fire alarm's going off, you don't just put a wet towel over the fire alarm and then say, Okay, well, it's good now. The alarm's stopped. Where's the fire?
Why did the alarm go off? Why do you have pain? Simply taking Gabapentin is not getting to the root of the problem. It may help you feel more comfortable. Most patients don't even know that Gabapentin and Lyrica are are not really pain medications. They are anti seizure medications that slow the pain signals down in the brain so you don't perceive the pain.
But for this type of neuropathic pain, it's not always very effective. Neither are opioids.
Jill Brook: Wow. Okay. So what kinds of things can you do to help these poor people?
Dr. Katinka Van der Merwe: So to answer your question it really is a whole body approach. I often I get flak on the internet and people say, Oh, well, but she's a chiropractor, you know, not a medical [00:10:00] doctor. But what I want people to understand is that in my chiropractic training, it's holistic training, so we are trained with the philosophy that the body as a whole unit functions together, and if one part of the body becomes healthier, the entire body by definition will also become healthier.
You can't treat a body like a car with engine, with parts, you know, you just take out one and make it better. So I say all that to say it is a very intricate approach. Here in our clinic we have 20 plus therapies and technologies that is delivered by a very experienced team where we do a bunch of things all at the same time.
All with the goal of rehabilitating the central nervous system, and by definition, the immune system. But not everybody can come to [00:11:00] Arkansas and come to my clinic, so there are some things you can do to decrease your inflammation globally. Things that you should and should not eat. Supplements that you should and should not take.
How you have to handle emotional stress in your life. And that's why I wrote the book to help patients also to explain my system, but just to help you at home make healthier choices. If you think of a pickup truck and it's just got a bunch of rocks in the back, you don't just unload all the rocks at once, right?
One rock at a time. Just keep at it and keep at it. And eventually that truck is going to get lighter.
Jill Brook: So on your website you have kind of a mini documentary that talks about your clinic and people's experiences there and one thing that I was interested in when I watched it was it looks like you have a big team of [00:12:00] people and one of the people on your team mentioned that he helps work with people's sort of emotional side to their pain.
And I thought that was interesting because as you mentioned, you also have a whole bunch of high tech things going on. And so I was wondering if you could kind of talk about how that emotional piece fits in and then maybe give us a couple examples of high tech things that you do at your clinic.
Dr. Katinka Van der Merwe: Even if you have a genetic condition, you can live largely symptom free in a lot of cases, or you really can pile on stress that flips the genetic switch, and that's where you go into the world of epigenetics. There's three kinds of stresses that tend to make us sick. are physical, chemical, and emotional stressors. And so if you, [00:13:00] once again back to that pickup truck, if you can remove some of that, right, that really helps.
Most of our patients have tremendous post traumatic stress from medical mistreatments or just going through a long period of time of not being well, not having a healthy childhood, not being understood, not being correctly diagnosed. So there's stress in that. A lot of our female patients do have a history of abuse, sexual abuse, physical abuse, and that comes into play as well.
So that's just another load that if the patient can work through some of that pain, at the same time as their physical issues being handled, then that is a very powerful combination. So we have the doctor that deals with a lot of the subconscious stress on a neurologic level. We have a treatment called [00:14:00] Serocet that balances the brain and helps with PTSD stress patterns.
And we also offer hypnosis, that I think can be tremendously helpful for any traumatic past or current stress. As far as technologies go, oh gosh, we have so many. Serocet is a great one that I just mentioned. Basically, EEG equipment records the brain function. And then it's played back to the brain as musical tones.
So if you have more activity, let's say, in the right parietal lobe than you should versus the left, that is going to put up a mirror in front of the brain so the brain can see its own imbalances, and then the brain says, Oh, I didn't know, I'll fix that, and I'll go ahead and balance that. So, you're [00:15:00] listening to these sounds, it sounds like a cat running across a piano, but all the way it's balancing the brain.
That's a great technology. We have another one that we use for physical therapy that causes the muscles to contract very rapidly essentially allowing us to speed through thousands of physical therapy exercises in a very short amount of time.
Jill Brook: That's interesting, so basically instead of explaining each exercise to the patient, having them do a bunch of repetitions, you just can get the muscles to fire how you want them to fire and just make it quick.
Dr. Katinka Van der Merwe: Exactly, you hit the nail on the head.
Jill Brook: Interesting. Okay, any others you want to tell us about?
Dr. Katinka Van der Merwe: Oh, we have a fantastic machine that we use to get the lymphatic system flowing again. It's hard with patients with neurologic pain because typically for lymph you would do [00:16:00] massages to get the lymphatic system to circulate again or you would use compression. So, you know, you have compression sleeves and then you pump that up and it's like, like a snake contracting the body of a lemon, it slowly squeeze the lymph to get it moving.
But if you have a patient in neurologic pain, you cannot squeeze their limbs or their body. And so, very conscious to keep our patients comfortable. So, it is a machine that uses gases. One of the gases is kryptonite, which I love. You know, Superman's gas and it looks like a little light bulb and you just glide it across the patient's skin, and when the lymph is stagnant, it feels like there's honey on the skin, it's sticky, and it allows us to start draining the lymph.
Those are just three of so many machines. For anyone interested in our system, I highly suggest that you go to our website, [00:17:00] thesperoclinic. com and go ahead and look at the treatment systems that we offer.
Jill Brook: Yeah, and are there, are there like, studies backing up how these things work? Because to some extent, some of these things sound like just magic or voodoo, but does this stuff have like, publications people can read about how they work?
Dr. Katinka Van der Merwe: So, many of our equipment pieces have had several small studies ran by the companies that offers it. I often have patients saying, you know, has your system been studied as a whole together? Because I think the magic comes in these things being done at the same time, not one by one separately. Think of it as 10 guys in a rope pulling competition and they're pulling against a T Rex,
and the T Rex is neurologic pain. If you remove nine of those guys and then you just have one guy pulling, he's not going to win. One therapy at a time. Patients may [00:18:00] try it and say, Oh, I tried that, didn't do, tried cold laser, didn't do anything for me. But they weren't backed up by the other therapies all at the same time.
So, when we looked at our system and potentially getting a study through Kent State, this was five years ago, Kent State said no scientific journal is going to allow you to do a study where you're doing 20 treatments, vastly different machines from vastly different manufacturers, at the same time in one system.
That does not exist. You have to take one puzzle piece. It costs at least one to three, closer to three million dollars, to run one very good double blind study. And then after two years, they'll allow you maybe to add one more little puzzle piece. So that didn't work for me. [00:19:00] And what I said instead is, you know what, we don't have all this time I'm turning 50.
I certainly don't have that many decades left. Let's just put the results out. Let's get people better. And word of mouth, that will be the proof of our work.
Jill Brook: Yeah, I understand how, how, that's definitely a limitation of science, absolutely. Okay, so tell us about, about the results you get. I, I know, I know that your, your documentary mentions that people come to you from all over the world, so something good must be happening. But tell us about like what kinds of patients you get, what you tend to see, are there certain symptoms that are easier or harder to treat, or what, what kinds of expectations should somebody have if they do your program?
Dr. Katinka Van der Merwe: So yes, some symptoms are definitely more tough than others. Pain is not the toughest symptom. It's a tough one it's a [00:20:00] lot to get on top of, that's why it takes 14 to 15 of pretty much all day treatments, 4 days out of the week. But we see incredible results, we have so many miracle cases walking out of here, people that reach, you know, the end of their rope and have been told just to learn to live with it.
That's what gets us passionate as a team, especially if you see children like that. We treat a lot of CRPS patients and they often have comorbidities of Ehlers Danlos Syndrome and POTS. Which is why I even, you know, familiarized myself with those conditions over the years and how to get on top of it and help those patients regain their health and their life.
Lately, we've been seeing a lot of long COVID pediatric cases. Those are certainly heartbreaking. We [00:21:00] had a new patient start last week and he is from another part of the country and he has been non verbal for two years except for speaking to his family. And he's been here a week and I was just told on Wednesday prior to shutting down for the holiday that he spoke to his therapist.
And so it's those tiny steps where someone would say, Oh, a kid spoke. So what? This child hasn't said a word for two years and they spoke to someone. So that is what energizes us.
Jill Brook: Wow, yeah, that's amazing. So, so I think you said 14 or 15 weeks, that's the expectation that people come, and then 4 days a week, they spend all day with you doing these various therapies.
Dr. Katinka Van der Merwe: Yes, yeah, it's pretty much all day. And then we don't do therapies Friday, [00:22:00] Saturday, Sunday, allowing the patient to rest. So there's a very delicate balance here. You have fragile patients. They're as fragile as butterfly wings. Even if you take a patient just with POTS it, none of the pain or the other symptoms as you may
know that patient can't just go in and do hardcore physical therapy or exercise. It takes so much out of your energy reserves. So it's very important that there are two pillars to the treatment system. One is to stabilize the patient, to keep the patient in a parasympathetic healing state and to keep them calm,
the nervous system calm. So that, on the other hand, you can push the patient as hard as you need to, to get them out of symptoms. But that they don't tank on you. They don't have to go to bed. Their pain and other symptoms don't go out of control. So, [00:23:00] it's this very fine balance. And that's why we rest for three days, allowing the patient to recover.
Jill Brook: Wow, okay. And people are probably wondering, okay, Arkansas, so I would go to Arkansas for a long time. What's Arkansas like? What do people do on those Friday, Saturday, Sunday?
Dr. Katinka Van der Merwe: Well, I think when you picture Arkansas, you think of rice paddies and people marrying their cousins. I'm going to say it because everyone thinks it, so, we are from a very beautiful corner of the state. We are known for some of the best bike trails in the nation. You can get anywhere on a bicycle and ride anywhere else.
We are very big on nature here, so we have rivers and tubing and hiking, a lot of hills, a lot of green it reminds me a little bit of Vermont or Kentucky. And so mostly not [00:24:00] what people picture. It is a very friendly state, you know, about a quarter of a million people in this area, so not too big, which I think is very important for people once they start feeling better to be able to go into nature
and recover. And also, if you go to a big city, it is so expensive on top of the treatment. And so this helps to keep living expenses down. But shockingly, a lot of my patients end up moving here once they complete treatment because it's a happy surprise how much they like Arkansas.
Jill Brook: Well, yeah, I was gonna say, I had no idea that there was a part of Arkansas that was like Vermont, not that I am not familiar with Vermont, but yeah. Wow, okay, and so you know you kind of mentioned nature. Do you think nature has a role in the healing process? Do you encourage your patients to hang out in nature a lot?
Dr. Katinka Van der Merwe: I do. You know, in the [00:25:00] beginning, it's meeting patients where they are. And if you're wearing dark glasses and noise cancellation headphones, then nature is also an assault. Whether it's too cold or too hot, your body just cannot adapt to those changes. But, once you start feeling better, or if you have a pretty good morning, just opening your eyes in the morning, I always tell patients, we have electricity in our bodies and we live on this great ball of earth that is naturally electric.
I don't think that's a coincidence. There is an art that we have lost, which is the simple art of being outside in nature with our bare feet on the ground. So I'm about to sound like a hippie. But, go outside, sit in direct sunlight, because the sunlight also feeds our energy and our bodies and our ATP, and get your bare feet on the surface of the earth.
And it could [00:26:00] be that simple, every day, just to reconnect. We wear shoes with artificial soles, we're driving cars, we walk on artificial floors and flooring. We just don't connect with nature anymore.
Jill Brook: Yeah, so I assume, are you familiar with like grounding mats or grounding sheets or grounding shoes and do you think those are worthwhile things to try?
Dr. Katinka Van der Merwe: Yes, I am familiar with grounding. I think the website, my preferred product, and I'm going to do a plug for this company and I'm not being paid by them, but it's earthing. com. I just think their products are very well researched. They have had a ton of studies done showing that it lowers inflammation globally in the body.
For myself, I am actually quite healthy. But when I ground at night, I have a grounding sheet, I find that I sleep much deeper and I [00:27:00] dream. I go into REM sleep where if I don't ground, I don't have as many dreams. But I think as a global tool to lower inflammation, it is a very powerful tool.
Jill Brook: So something you said earlier is now kind of striking me. So I too have tried a grounding sheet and I did not notice anything and so I kind of thought, eh, well maybe it's not doing anything. But now that you gave us the metaphor with the pickup truck full of rocks, I'm wondering if there's something like that where it certainly can't hurt and there's seemingly some evidence that it does some good things then maybe just because I didn't feel anything doesn't mean I should stop.
Maybe it means that it was just one little pebble out of the truck and I need to just keep doing that but add on the other things and not be so judgmental after a two week trial of that all by itself.
Dr. Katinka Van der Merwe: Love that you said that because you're saying [00:28:00] what so many people do in their daily lives. We want to see big evidence that something's working and there really is an art to being patient with healing. Everybody heals at their own pace, I've learned that through the years. Some patients, first week here, boom, pain goes to zero, it's like a miracle.
Everybody wants that, but guess what? Not everybody heals that way. For most people, it's slow and steady wins the race over time. And this is trite maybe, but if you make just one good, small change a day, and you can stick with that change by the end of the year, you've made 365 changes. That certainly is going to make itself evident to the point where you'd know changes are happening.
Jill Brook: Wonderful. Well, I know that you have a lot of [00:29:00] information online, and so I want to make sure we will put a link to your website in our show notes, but where can people learn more about you and your clinic and your book online?
Dr. Katinka Van der Merwe: So, our website is a great resource for that because everything is together. Also, our social media presence. We post videos pretty much almost daily showing some of our results and just some educational things. So, it's the Spero Clinic, S P E R O, it means hope in Latin. We're on Instagram, we're on TikTok, we're on Facebook.
And then this is actually my third book. I wrote a book on fibromyalgia called Taming the Beast. Back in the day when I just started this work and then Putting Out the Fire, New Hope for CRPS or RSD, the old name for that. And then this latest POTS book, POTS EDS, which I hope is going to be a great [00:30:00] resource for people.
Jill Brook: Well, fantastic. Well, thank you for all of this. Do you have any parting words for people? And I will say the feedback that I always get from listeners is that they listen to this podcast when they're feeling at their worst. Do you have any words for somebody who's listening right now who might be in a whole lot of pain and maybe feeling like they've already tried a lot of things and they're a little bit hopeless?
Dr. Katinka Van der Merwe: Yes. Your trust in healing is not trusting some outside system or doctor or potion or pill or supplement and that you always have to remember. You should have a reverence for how incredibly intelligent your body is. I always tell patients, look, you're cutting carrots, right, making stew, and you cut your finger and it's a pretty deep cut.
You don't look at that cut and say, well, [00:31:00] that's it, I'm gonna either bleed you deaf or live with this open cut for the rest of my life. We've divided healing up. We accept healing for things like cuts. We just think it's going to get better, even if you break a bone. It may heal crooked, without help, but it is going to mend.
That intelligence and that power did not abandon you overnight. It did not abandon chronic issues. It is constantly trying to push in the direction of your recovery. And if you assisted, if you continue to make good choices and decisions, you're moving in the right direction. Even if you can't tell the difference today, do not give up.
The people that recover are the people that never gave up. They just toiled longer than the other people did. It's the people that sit down and say, well, never going to get better. Gave it my [00:32:00] best and this is it now. And then that is going to be the rest of your life. So keep fighting.
Jill Brook: I love that. Thank you so much. Those are beautiful words, and you've motivated me. I'm gonna go put my grounding mat back on my bed. So thanks a million, and we hope that we can talk to you again sometime soon.
Dr. Katinka Van der Merwe: It was lovely meeting you.
Jill Brook: Thanks so much. Hey listeners, that's all for today, but we'll be back again next week. In the meantime, thank you for listening. Remember you're not alone, and please join us again soon.
