SIBO and Hypermobility Syndromes with Dr Alena Guggenheim - Part 2

Dr Nirala Jacobi:

Welcome back to part two of the SIBO Doctor Podcast, and let's jump right back into it. Getting back to ... Okay, so we've got these two aspects of this motility that are a clear outcome of EDS, now, let me just bring it back to the listeners who are maybe a little confused about where we're going with this. You might be a patient, listening and maybe you were diagnosed with I with EDS, or this is all new to you, but really, what we're talking about is a condition where your connective tissue is affected, and what I wanted to kind of bring it back to also is what are the typical sort of red flag symptoms for people that may think, "Hey, maybe this is me. I used to be very flexible when I was a kid, and yes, I did."

"I am double-jointed. I was able to do all these things, and I'm still very flexible, and I have a lot of headaches, and I have a lot of fatigue, and I have a lot of gut issues, and nobody seems to know what it is. I was diagnosed with fibromyalgia or with IBS, and it's still not getting any better." Those are the people we're really kind of talking about, that are falling through the cracks of medical diagnoses and are not really getting helped, and so just kind of bringing it back to, that it's not everyone that we're talking about. It's really a subset of the people that have chronic digestive issues and other things as well, but mainly those.

Alena Guggenheim:

Yeah, and this is where my research brain kicks in, because I would just be so fascinated to know there's all these little inward touchpoints that, I think 10 years from now, 20 years from now, I don't think people are going to need to wait decades to get diagnosed, and we might start to realize, "Gosh, all these people with IBS, there's a such and such percent chance. I don't really know what it's going to be," that this is related to, they're at an increased risk for developing these things because of the connective tissue disorder sort of lays it open like, "Here, SIBO, move in. I'm a really hospitable host." Like, "Come on, and I'm going to have a really hard time evicting you," so just everybody moved to town. Yeah, so I don't know that I ...

Nirala Jacobi:

Well, just let's go back to-

Alena Guggenheim:

But you went through the list. You went through the list perfectly, which is chronic pain, chronic fatigue, chronic gut issues, oftentimes chronic headaches, a lot of positional symptoms like I joke that people with EDS were designed for the moon. Like gravity is just a little harder for them. They usually tend to feel better. The more they lay down, feel cruddier the longer they're up, and then for each individual person, it's such a mix of what's really showing up for them.

Nirala Jacobi:

So they're no red flag, like you haven't seen any sort of like, "That's the one. That's the nugget symptom that's going to make you think EDS"?

Alena Guggenheim:

I guess I would say a lot of recurrent ankle sprains is pretty big. Maybe they haven't dislocated things, but they joke that they have like a box of ankle braces in their basement in their childhood home and three sets of crutches in different sizes, so I see ... The recurrent ankle sprains tends to be fairly common, but also, I don't think I've met many EDS patients that told me they liked PE class, so they tended to really dislike PE.

Nirala Jacobi:

Well, I really dislike PE, and for lots of different reasons.

Alena Guggenheim:

Maybe it's actually just that everybody hates PE.

Nirala Jacobi:

Yes, and hanging from those ropes, and ... Yeah, no. I hated PE class.

Alena Guggenheim:

There's just this often, this sense that their body is different than their peers and they didn't really exactly feel like they fit in, but they felt like they were supposed to because they looked really fine on the outside, and maybe just kind of assumed like everybody thinks they're going to pass out when they have to run the mile, everybody's knees hurt when they walk up the stairs. Those are just really kind of common stories that I'll hear from people and ...

Nirala Jacobi:

And also, like some of the other, yeah, I mean, and the flexibility obviously, initially. So I'm going to refer to my notes that I made for this podcast and basically some of the things that I learned from you, that things to look out for as practitioners or it's maybe common digestive complaints, and I think it's more associated potentially, or what you frequently can see is the sort of whole gamut of gut issues, so from gastritis to esophageal dysmotility or spasms, the gamut of IBS type symptoms, but also rectal prolapse, diverticulitis, frequent hernias, and small bowel diverticula as well, which can be one of the reasons we see SIBO make an appearance besides the things that we've mentioned with motility and structural abnormalities. So those are the things that, why we're really talking about this, is that I always get so excited about, maybe because we're naturopathic physicians, we are so trained to looking at a cause, and what can we do for the cause rather than just continue to treat the fallout from the cause? And so that sort of leads me into like, "What can we do for these patients, and is there coordinated care that they can get?," or because they're multisystem. We don't have good experiences with conventional medicine, with multisystem issues, where they get sent to the rheumatologist, they get sent to the gastroenterologist, they get sent everywhere without really getting anywhere, really.

So what can we, as practitioners offer these patients?

Alena Guggenheim:

So if we're going to have that conversation specifically within the GI tract, step one, your listeners have covered, which is identify and treat SIBO. That's the low, low-hanging fruit, and that's something that's not happening for the majority of the people that I work with. Then, I start to look at those overlapping Venn diagrams. I call them the overlapping Venn diagrams of hell, which is they're autonomic function and screening and looking for POTS, and then treating the POTS or treating their autonomic dysfunction if it's a version other than POTS.

Nirala Jacobi:

Can you briefly describe the POTS to our listeners?

Alena Guggenheim:

So POTS is ... I'm not very good at briefly describing things.

Nirala Jacobi:

So postural orthostatic tachycardia syndrome ...

Alena Guggenheim:

Tachycardia syndrome.

Nirala Jacobi:

And that often comes as a triad with EDS and MCAS, and this triad of [inaudible 00:08:16]-

Alena Guggenheim:

Yeah, about 60, 70% of hypermobile folks get autonomic dysfunction, and basically, your autonomic nervous system controls your pulse, your blood pressure, your small bowel, your motility of smooth muscles, so that's your whole GI tract motility, your bladder motility, your blood vessel motility. It's doing tears, saliva, body temperature, sweating, pupillary response to light. I kind of say it's like the hardware everyone just takes for granted, that your body's just going to regulate your temperature and keep your blood pressure where it needs to be. We call it POTS because currently, we diagnose it by comparing a laying down and a standing up pulse, and if it's an increase more than 30 beats per minute in an adult, 40 beats per minute in a teenager or a kid, we call it POTS. The tachycardia is maybe the least of somebody's concerns.

Maybe their concerns are more in the realm of their GI motility, maybe primarily, we're seeing the most severe of their autonomic dysfunction and their motility. Maybe it's in their body temperature regulation. That's why I don't really love the word POTS because it has the word tachycardia in it, which makes it sound like it's a tachycardia problem. It's really a problem with the nervous system, being able to regulate things. Why these folks get POTS, that'll have to be for part two of the podcast, but identifying and actually treating the POTS and treating POTS is, there's a lot of pharmacology that's available.

Sometimes the pharmacology helps people substantially. Sometimes really getting really strong lifestyle interventions in place really helps them. For instance, sometimes if I have somebody try to eat their meals in a zero gravity chair, where we're actually aiding and helping blood flow get to their GI tract while they're eating, rather than having them eat standing up or sitting down, where their smooth muscle of their blood vessels are just, they're getting all of their blood pooling in their extremities and in their pelvis, and then they eat and they feel significantly worse. Sometimes getting them in a zero gravity chair while they eat or getting them with the right kinds of compression garments and trying to get their blood volume up with drinking salt water, and those kinds of, like the lifestyle pieces can sometimes really substantially improve their GI symptoms and improve their outcomes, because they can have a lot of nausea, right? When you're nauseous, you don't eat, you ...

If we can get the nausea down, we can get the nutrients in, and then mast cells, right? I always, when I'm honing in on somebody's GI tract, I'm like looking at their biome, I'm looking at the autonomic function, and then I'm looking at the immune function, and sometimes it's simply adding cromolyn, or adding a really good quercetin, and looking at not ... I'm not personally a huge fan of really restrictive diets over long periods of time, but maybe finding that there's specific high histamine foods that are really triggering for them or foods that inhibit their DAO, and then they're not breaking down their histamines, so coming in and really solidly treating the MCAS with medication and/or non-pharmaceutical ... and vitamin C, and luteolin, and Palmitoylethanolamide, and all of those pieces, and then working on the nervous system so that when the immune system calms down, the nerves can fire back up and start moving things, getting the actual SIBO population down and treated with all the tools we have in our toolbox for that, and then using long-term motility support tools. So people will be like, "How long do I have to do this motility thing? Like a month?," and I'm, "Um ..."

Nirala Jacobi:

Probably for life, yeah. So how often do you see MCAS and POTS, or let's say MCAS be also present or be comorbid? I don't even think it's comorbid. It's probably the whole spectrum of EDS, but how often is that do you see it combined in a patient?

Alena Guggenheim:

Now, I should say here that I have some selection bias because the people that tend to see me are the people that have failed. Either they're the sickest and they're the ones that have really failed to get care, even from really great integrative, naturopathic. Holistic thinking providers on their team. So what I see could be different than somebody else. I'm going to guess 80, 90%.

It's a lot. It's a lot.

Nirala Jacobi:

So that's very relevant that we talk about MCAS. For those listeners, I've done, I think two podcasts, one with Dr. Lenny Weinstock on MCAS and the digestive presentation or symptoms of MCAS. If you're unfamiliar with that topic, I recommend that you go back in time and listen to that. Actually, Lenny and I, we did that podcast on the January 6th, and we were both listening to CNN when we were like, "Oh my God. Oh my God, the world is ending."

Anyways, just a fun little sign. Not fun, but a side note, 'cause that's how I will always remember it. I will always remember that day.

Alena Guggenheim:

Well, I really have Dr. Weinstock to thank for my ... He was the one that opened up this rabbit hole for me for the very first time. So prior to a very specific lecture that I remember attending of his in approximately 2013, I just kind of thought EDS was this thing that was kind of cool, like made people bendy, and I'm like, "Oh, they're good ballet dancers," and then I went to a lecture of Dr. Weinstock's, and he talked about the link between EDS and the development of SIBO, and ...

Nirala Jacobi:

Minds were blown. Yeah. Minds were blown.

Alena Guggenheim:

Well, I remember, I'm not even kidding, I remember where exactly I was sitting in the room. I remember the time of day, like what the shadows of the light was-

Nirala Jacobi:

You're kidding. Wow, that was a significant moment. Yeah.

Alena Guggenheim:

It was a very significant moment. I was frantic. I was frantically taking notes, and I was ...

Nirala Jacobi:

Those are the moments.

Alena Guggenheim:

It was at a SIBO symposium, I think in 2014, maybe 2013.

Nirala Jacobi:

I probably was sitting very close by, and I had that same experience when I first heard about SIBO way back in, I think it was 2010, Dr. Siebecker and Steven Sandberg-Lewis, and I was just like, "I remember that moment distinctly," and so a newbie have become an EDS expert/SIBO expert/something else expert, but yeah, I've really kind of stayed in the SIBO wheelhouse and functional digestive disorders, but enough about us. Let's talk about, I was thinking more, again, back to, what can people do and what can practitioners do, and okay, let's leave MCAS and POTS to the side, and is there anything that patients can do to improve their connective tissue? Have you found any of our substances that we use, whether that's Gotu kola, or collagen, or vitamin C, or copper or any ... Like I'm just off the top of my head, you've not found anything that helps.

Alena Guggenheim:

I'm going to say specifically, as a substance that one can take, no. Collagen, I think is an important one because people ask me about it all the time. Like, "Oh, I read it's a collagen deficiency. I'll just take collagen." Here's my stupid, little analogy I used for collagen.

I think we all, hopefully, many of us remember the original Willy Wonka movie with the kid that's obsessed with TVs, so he's in the TV room and he gets shot by the beam, and he goes into a gazillion little pieces, and then he comes back down, comes all the way back together, perfectly formed in the TV. That's just not how collagen works. So when we eat collagen, it breaks up into all the tiny little pieces. It's not like it hones in on your connective tissue, and then reconnects and rebuilds your tendons that have been overstretched or torn or damaged from hypermobility. So I tend to focus less on actual collagen and make sure that people are getting enough protein.

Get amino acids in your diet. It doesn't have to be animal-based protein, but high carbohydrate diets. You're simply not getting enough amino acids to build the connective tissue, so we need protein. We need vitamin C, helps organize connective tissue and organize collagen, so as you're making more. There are nutrients I think about, like vitamin C, glycine, zinc, copper, making sure that they're kind of covering the gamut of those basic nutrients.

However, if somebody has really bad SIBO, you know, we can be putting nutrients in their mouth all day long. It doesn't mean they're getting anywhere. So that's why when you ask me, "Okay, what do we do?," I'm like, "Well, your listener have step one in a good place, which is identify and treat the SIBO so that all the nutrients you're putting in can even have a chance to get there. The other things that I think are from a structural support is getting them working with a physical therapist who actually truly knows what they're doing. So I kind of tell people seeing a physical therapist who doesn't understand the nuance of working with a hypermobile body is going to be worse than no PT at all.

So there's making sure that the basics of nutrients are covered, specifically amino acids, vitamin C, and glycine, I kind of think of as higher level, but they need to be able to get them. Then, there's working with the right kind of manual therapies, physical therapy. I'm very careful with chiropractic. I don't tell people not to do chiropractic. I discourage them from doing high velocity, low amplitude adjustments of the upper cervical spine and work with a chiropractor that really understands hypermobility.

I tend to see better response and outcomes with more osteopathic style manipulation than chiropractic. Also, there's kind of specific techniques, I think people tend to do better with like structural integration like Rolfing in the right hands can be very effective, Fascial Counterstrain techniques. So there's kind of like some specific techniques that I think do well in these bodies, and then getting them actually correctly splinted and braced. We can't just let them kind of flip-flop their way through life without some external supports. There's a little bit of a myth out there, that if you give somebody a brace, that they're going to get muscle atrophy and just get more weakness and more instability.

That's true if you're truly immobilizing a joint, so as a visual here, which people can't see, if you put a wrist and a cast, and it can't move in any direction, all the muscles are going to atrophy, but if you get somebody in correctly fitting, supportive, flexible braces that allow them to continue to have movement, but in the healthy range of motion where they're not getting recurrent injuries, they can actually use their fingers, use their hands and their forearms more, and build muscle over time. So I see getting them to a really good occupational therapist, hand therapist, orthotist, who's actually helping getting them splinted so that they can actually use their body more, and then into a injury rehab cycle, and they can actually start to build more muscle and functionality. I have a whole team of people. I've got the shoulder person, and I've got the hand and wrist person, and the knee person, and the clavicle person, and then there's also simple things that people can get that are kind of direct to consumer. There's this product called the Body Braid that I really like.

It's basically like a whole body proprioceptive device that kind of helps people actually be able to keep their shoulders in better alignment, in relationship to their hips, and they can actually wear them when they're sitting, wear them when they're walking, so-

Nirala Jacobi:

What's that called?

Alena Guggenheim:

So it's called a Body Braid.

Nirala Jacobi:

Body Braid, like as in like hair braid?

Alena Guggenheim:

Yeah. Yep, Body Braid. It kind of looks like a braid because it has all these crisscrossing things or ... Yeah, so getting people into good SI joint, good SI belt, so those pieces can be really important from just the external structural support. Someday I hope that we have the tech that you could just have these little magnetic external, flexible exoskeletons that kind of externally just hold somebody together so that-

Nirala Jacobi:

Yeah, that would be very helpful. That would actually be very helpful for these patients.

Alena Guggenheim:

Yeah, maybe 20 [inaudible 00:24:23].

Nirala Jacobi:

I mean, I so often have wished that you could have cloned yourself because I've got all these patients that you are way too booked up to even consider referring anybody to you, and this is the thing, is there is this dearth of highly skilled practitioners, such as yourself, that can really manage somebody that has these multi-system involvement and can refer people to the right help that they need. So I understand and appreciate that this is probably beyond the scope of this podcast, to really say, "Here's what you do," and blah, blah, blah, because people, they will have different symptoms that require different types of help, but that was already very helpful. That being said, are there resources that people can read up more or get more help and get sort of an understanding, maybe a little bit of a roadmap of what could be helpful for them?

Alena Guggenheim:

Yeah, I've got so many ideas. So the first is that the Ehlers Danlos Society does have this educational ECHO program that's like a once a month lecture designed for providers. I think it's kind of like the slow way to kind of come up to speed, but it's a really good starting place for a provider that's like, "Okay, I need to start dipping my toes in this," because you're right, I ... Actually, most providers that are really specialized in this have really limited access because of the breadth of the problem and the lack of educated providers. There's also tons of free content through Dysautonomia International, so they maintain a Vimeo library of past lectures, and there's great lectures on GI disorders and autonomic dysfunction, and mast cell activation, and overlap with EDS, and how to manage headaches in this population, and pieces like that.

So going to Dysautonomia International's Continuing Education events has been one of the most important pieces for my own education. I try to do 40, 50 hours a year in really specific CME just in this. Last but not least, I'll make a plug. I also have a course, like a 14-hour course that's co-taught with my mom who's a DO rheumatologist, so an osteopathically trained, but conventionally practicing rheumatologist who also treated a lot of EDS, and really started to recognize how much autoimmunity and inflammatory disorders we were seeing in this population. So we have a 14-hour course and lots of plans for follow-up courses.

Nirala Jacobi:

And this is for professionals, I think you told me?

Alena Guggenheim:

It's for professionals, yeah. I don't have anything that's patient-facing at this point, but lots of different kinds of providers have done it. I've had MDs, DOs, NPs, PAs, NDs, occupational therapist, physical therapist. Yeah, and it's a good starting place, specifically for EDS as opposed to going in and getting more of the autonomic training in those pieces, because it takes a bit to feel confident that you're doing the right thing, and you're starting to experiment tools that you're like, "Oh, God, I've never ... I haven't ... Every time ..."

For the first 20 times you prescribe a new medication, you're like, "Hold on, I got to look this one up again. I got to make sure I've got all the parameter." So yeah, those are some resources, so it's a acknowledged worldwide problem. This is not just a Western world problem, and it's not a problem just in the U.S. or Australia or wherever people are listening to the podcast. There's lack of knowledge in the Middle East, and in Asia, and in Africa like this.

It's not a Western disorder and a Western problem, and the lack of access is pretty universal. So it's basically a call to action, like you guys got to be your own experts.

Nirala Jacobi:

Yes. I think that's what people are really also getting out of this, is that there isn't a specialist that they can easily access that can help them with each arm of this octopus tentacle that reaches into all these different systems, although I love octopi, but as a visual.

Alena Guggenheim:

[inaudible 00:29:41]. I know.

Nirala Jacobi:

But, okay. We do have to wrap things up. I mean, I know this just touched the iceberg, the tip of the iceberg, I should say, of the enormity of conditions and symptoms that are associated with EDS, but I really hope that people got a little flavor of what it is that you do and how incredibly knowledgeable you are about this topic. Are you at all available for more patient care or are you just booked up for the next decade, basically?

Alena Guggenheim:

Yeah, haven't been able to take new referrals since 2019. I think I had a queue of more than 600 that I needed to work through before I could start taking new patients again. There's one ... Here's my last parting thought, and then we can say goodbye, which is that this is a really, really fun population to work with. I think people get scared and they're thinking it's going to be overwhelming, and they're just such incredible people.

I feel so, and I won't go too often to like a spiritual, what I feel, but I just feel so blessed that this became my life path, that these are the people that I get to talk to every day, that I get to help them explore their health, and get listened to, and start to understand themselves. It's not scary and it's not ... to me at this point. Gosh, it sure was in the past, but it's not anymore, and they're great. They're just great patients.

Nirala Jacobi:

Wonderful. I mean, it's so your sincerity and love for your patience really shines through in every lecture that you give, Alena, so thank you for that. Would love to have a part two, even though we are splitting this podcast into two parts because it's too long, so we'll maybe reconvene for another one, but I'm taking what I can get because it took six years to get you onto the podcast, but thank you so much for your time and all that you contribute to this field.

Alena Guggenheim:

Thank you so much for having me, Nirala.