Episode 19: Dr. Alissa Zingman, MD, MPH On Healing with Ehlers-Danlos Syndrome

Subscribe:

Watch on YouTube:

Full Episode Transcript:

SPEAKERS: Dr. Andrew Wong, Dr. Alissa Zingman, MD, MPH

Welcome to the Capital Integrative Health podcast, a podcast dedicated to transforming the consciousness around what it means to be healthy and understanding the root causes of both disease and wellness. I am Dr. Andrew Wong, co-founder of Capital Integrative Health, an integrative practice committed to expanding access to holistic root cause medicine to the global community.

Dr. Wong:

Today, we have Dr. Alissa Zingman on our podcast. We’re so happy to have you on so just a little introduction here. Dr. Zingman has some training in Orthopedics and Preventative Medicine and has really focused her practice on treatment and diagnosis of Ehlers-Danlos Syndrome which is really a hypermobile condition that affects a lot of folks and probably we can talk about this more today Dr. Zingman but you know, there’s certainly a lot of people that are probably undiagnosed even too so today we’re really happy and grateful that you’re here and for all the listeners here, we’re bringing you a conversation today about integrative approaches to EDS, also called Ehlers-Danlos Syndrome and hypermobility so thank you so much for being on today, Alissa.

Dr. Zingman:

Yeah, thank you for having me and I just feel so lucky also in this area to have someone who takes such an integrative approach and takes the microbiome into account and does all the things that you do because as you and I have discussed privately and I’m sure we’ll get into today that’s so important in general and particularly for this population.

Dr. Wong:

Yeah so thank you so much and and as we both know and I think the listeners know as well, it takes a village and it takes looking at you know a chronic condition like Ehlers-Danlos Syndrome from multiple angles to really move the needle. So, let’s start with some background questions first. What got you excited and fired up about Medicine and you know, how did you become a doctor? What do you enjoy most about what you do?

Dr. Zingman:

Oh, what a fun question. Okay. I may take up the whole hour on this though. So, I have always kind of been fascinated with the human body you know. I was that kid. My big brother is a very good soccer player and I was that kid on the sideline whenever anyone got injured, I really wanted to see exactly what happened. I remember one time, one of his best friends who lived down the street from us slid on a broken beer bottle for a slide tackle and his entire calf got sliced open, you can see all the layers of the fascia and muscle, and my parents still talk about how they had to you know peel me away from him because I just wanted to keep looking at the wound so with lots of empathy of course but I’ve just always been very interested in particularly just the musculoskeletal aspect of the human body and biomechanics and I was a dancer. I was a very serious dancer growing up and danced professionally for a little while, went to dance conservatory so certainly had a lot of injuries between dancing that much and having EDS myself, having hypermobile type EDS and that got me even more interested in Orthopedics which is where I kind of started my journey and then the rest of it sort of found me because I had to learn how to kind of get my life back and and get my health back in order and it was very hard to connect and it took over a decade to connect with the right people, I would say over 15 years and along the way, I just learned from people like you and everyone else I interacted with and just you know reading, reading, reading.

Dr. Wong:

Well, I think let’s start with some basic questions. First of all, you said you found out at some point in your health journey yourself that you were diagnosed with EDS, I guess when was that but then also more more broadly what is Ehlers-Danlos Syndrome? Let’s start with that.

Dr. Zingman:

Sure. So, Ehlers-Danlos Syndromes are sort of a collection of heritable connective tissue disorders so we do believe them to you know, be inherited. That doesn’t mean the parent has to have it. For example, I have a family where both parents have the same single copy of a certain mutation and so I think three of their five children ended up having hypermobile Ehlers-Danlos Syndrome. There are multiple types. Some of the types, the skin symptoms are most predominant, some vascular in fact, there’s a vascular type, a valvular type. The most common type is the hypermobile type. Hypermobility is sort of the

hallmark that most people think of when they think of Ehlers-Danlos Syndromes but it’s actually because there is a connective tissue in every part of your body from your eyes to you know, what’s keeping your brain kind of suspended in your head but sort of these nets of connective tissue and all the fascia, all the you know valves in the heart, and all the visceral so the gut, kind of placement you know, what’s keeping your colon kind of suspended in the position that it’s suspended in is connective tissue, the valves and the gut connective tissue and you know the pelvic floor, connective tissue so it’s really everywhere and the the implications of having connective tissue that is of lower integrity than the average population are you know, almost infinite it seems. Yeah.

Dr. Wong:

So, to summarize that, what I got from that and that was a great answer, thank you so much, that connective tissue disease affects all organs because every organ-

Dr. Zingman:

Absolutely.

Dr. Wong:

Has connective tissues. So, if if someone goes to let’s say their primary care practitioner and they come in with the diagnosis of EDS or even the primary care suspects that. What kind of screenings should that person be getting?

Dr. Zingman:

Yeah, that’s a great question. So, anyone with a diagnosis of Ehlers-Danlos Syndrome, it’s very well documented in the literature, should have an echo of their heart and that’s to look for things like mitral valve prolapse. The exact frequency with which those echoes are required is up for debate but the fact that there should at least be an initial and a follow-up is not debated. That is definitely part of preventive management. An eye exam, they should have an annual eye exam by an ophthalmologist and that is because the lens of the eye is held in place also with connective tissue, much the way a shoulders can start subluxing so partially sliding out of place. A subluxation is a partial dislocation. That can happen with the lens of the eye. Having said that, I’ve actually not seen that once in probably about 500 EDS patients but but yes, the hypermobile EDS type definitely should be having that annual eye exam because that’s something you wouldn’t want to miss. And then, the other things really are a tremendous amount of integrative symptomatic management so, if the person has neck pain you know, diving deeper into that, asking about headaches, asking about cerebellar function you know, doing physical exam tests that are really a comprehensive neurologic exam even for something as simple as you know my head hurts, my head feels too heavy to hold up because in that example, you could be looking at something like craniocervical instability, right? And so, if they’re having shoulder pain, if they’re having wrist pain, hip pain you know, have subluxations in mind ask a primary care physician and a physiatrist is a great person to refer to. If it’s something surgical, obviously our orthopedic colleagues, our neurosurgical colleagues for you know, spine and neurologists are you know, all of these people can be part of a multidisciplinary team and then in terms of sort of systemic mystery type issues which EDS patients tend to have a lot and I think for primary care physicians I would imagine it’s probably a little overwhelming to have a patient come to you and you know, almost every part of my body hurts and my gut doesn’t work right, I can’t hold my urine and food makes me sick but that’s really real. That’s really real for a lot of people with hypermobile Ehlers-Danlos Syndrome. And so, my advice is to start picking off those problems one by one like any sort of big complex issue, you want to sort of break it down into its component parts to the best that you can and certainly functional GI disorders, increased intestinal permeability, gut dysbiosis can be part of it. As for more systemic inflammatory immune disorder like mast cell activation syndrome which I think is just so often not part of the care that these patients are getting that muscle activation syndrome treatment and then lastly would be to really keep an eye out for autonomic nervous system function on anything that falls within them because dysautonomia is part of this and certainly the most common manifestation that we tend to associate with Ehlers-Danlos syndromes would be POTS, Postural Orthostatic Typography Syndrome, so a cardiologist or neurologist or there’s a dietary clinic at Hopkins that specializes in POTS you know, there are people around who can you can treat this.

Dr. Wong:

Great. So for the listeners, we have Ehlers-Danlos Syndrome which is a connective tissue disease that can basically affect any organ and cause any symptom, is that? I mean that that’s what I’m getting. Is that? Right. Any organ so how-

Dr. Zingman:

There are some organs that are much less likely to be affected like the kidneys.

Dr. Wong:

Okay

Dr. Zingman:

But yeah, I mean you know, there is a lot of variability in how people are affected absolutely. Yes.

Dr. Wong:

And what would you say would be the top symptoms of EDS to look out for and also how is EDS formally diagnosed?

Dr. Zingman:

Yeah so the formal diagnosis since 2017 has been through a diagnostic worksheet which is available online if you just google ‘EDS diagnostic worksheet’. It’s available on the Ehlers-Danlos Society website as well as a few other places and it is a checklist criteria. It’s important to note while this checklist is doing its best to take something and make it as objective as possible so that you know three different physicians evaluating the same patient ideally would fill out this form exactly the same way. There is going to be some inherent variability and some subjectivity to it but basically, we’re looking for joint hyperextension in the elbows and knees beyond 10 degrees so more than 10 degrees, we’re looking for a person to be able to put their hands flat on the floor with their knees totally straight bending kind of holding themselves in half, and we’re looking for the thumb to bend in palm reflection of the wrist so that the thumb touches the forearm and for the small finger of the MCP joint to have hyperextension beyond 90 degrees and that forms what’s called the Beighton score. It’s really important to me to always kind of bring up what is not included in this hypermobility scale, cervical, neck hypermobility which is a

really important thing to look out for because it may lead you to get advanced imaging and it could even lead you to discover you know, that this patient may benefit from bracing or surgery or may need some very focused physical therapy for their neck and can cause a lot of symptoms. Shoulder hypermobility is not on this scale and it’s definitely something to look for. I can’t tell you how many patients, I mean hundreds that I’ve seen with shoulders that are sitting in a partially subluxed position just all the time and they have no idea and they’re experiencing that as tightness kind of like what we call ‘coat hanger pain’, right? Which is if you imagine where your shirt was sitting on a coat hanger but your body is the coat hanger you know, and looking for the shoulder hypermobility and then the other big places would be the kneecap the patella and the feet and ankles because if we give some people some extra support with their feet, maybe do some osteopathic work to get their feet into alignment, sometimes we’re taking their pain down by like a third just from doing that and just from treating the shoulder hypermobility which we can sort of get more into treatment later. The other parts of the diagnostic worksheet look at skin findings, hyperextensibility. For example, how kind of soft and velvety the skin is. They look at some historical information. Has a person had a number of hernias? Do they have pelvic floor prolapse? And there’s quite a few sort of areas there that looks at whether or not you have family members but the point I want to get across is any physician, any Pa, nurse practitioner, physical therapist, I want everybody to feel empowered to download this form, keep it somewhere in your office and take it out when you have a suspicion. It doesn’t mean you have to be the diagnostician but maybe you’ll pick up on something and you can refer to the geneticist or someone like me who can help manage.

Dr. Wong:

And if you’re listening out there and you have chronic joint pain or muscle pain or hyper hypermobility and even if you’re not a clinician, I think it sounds like it’s publicly available, right? People can download this?

Dr. Zingman:

It’s completely publicly available and that’s a great point. The patients absolutely. I have so many patients who they’re the ones who figured this out. I mean that’s actually the most common scenario and if you sort of are someone who gets injured a little too much, pops and clicks a little too much or a lot too much, maybe even has pain or you know joint pain or muscle dysfunction to a degree that is causing you some disability you know, this could be a diagnosis that you might want to explore if you have some hypermobility of your joints.

Dr. Wong:

Great. Thank you so much and I have another related question to that actually that came up as you were talking. The EDS population because I think there’s a lot of even frustration with you know, people kind of going through the medical system and complaining or you know, talking about I would say talking about joint pain and you know, chronic issues and things and really not getting that diagnosis so how common is EDS and how common is it for it to be underdiagnosed?

Dr. Zingman:

So, there’s no accepted widely agreed upon answer I will say to that question. So, what I’m going to share with you is my opinion and my opinion is that it is very underdiagnosed. The paper that most people reference, lists the number as one in five thousand. I will tell you in my experience working with a self-selected highly motivated upwardly mobile population, really you know, people who are in the theoretically best position of anyone in our society to get this diagnosis that some of them have been waiting 30 years for this diagnosis. Some of them have been waiting 15 years but everybody’s been waiting. Everybody has sort of seen a lot of doctors, had a lot of care, been trying to figure out, and had their own sort of difficult journey to the diagnosis. It’s not easy and that is where I really believe that it must be underdiagnosed. And my journey was very difficult even as a physician you know, to get the diagnosis.

Dr. Wong:

How did you get diagnosed if you don’t mind me asking?

Dr. Zingman:

No, I don’t mind at all. So, I’ll start with how I didn’t get diagnosed and I’ll lead you up to how I got diagnosed. So, I remember very distinctly in the third grade deciding that my body worked a little different than everybody else’s. I was, as I mentioned earlier, a very active dancer, doing ballet and modern and when the teacher would tell you to do a certain thing, I would have like eight different options of how I could do it and it seemed like everybody else only had one different option of how they could do it you know, and and I remember saying to her well but my hip doesn’t work that way. I could have my leg up high like this, like this, like this, like this or like that which one’s right you know, and she’d say, “I don’t know. Your leg’s really high”. That’s all that matters stuff you know, and I think it was when I was nine, so fourth grade that I had my first injury and then at that point I started getting in about an injury every like two years or so and nobody else was getting any injuries you know, so that struck me as a little odd, right? And then I started having tummy troubles so when I was around 14, I started having regurgitation of food and in particular anything old and dairy and you know, my first thought was that maybe I was bulimic having you know watched a very impactful HBO after school special about such and so I was sure of that and then you know it sort of came up in my work up for that that I really didn’t want to be throwing up and I wasn’t you know making it happen, right? And so, I remember just being so confused and I got blood work and I was told don’t worry about it and I said well but I’m throwing up three or four times a day like I don’t like it. I don’t want to throw it through four times a day. I was told I would just grow out of it not to worry about it which it did eventually happen but what I ended up doing was a bunch of meditation and like I sort of was doing what I now recognize as osteopathic work around my diaphragm and my lower esophageal sphincter that really helped and I sort of started doing that my senior year of high school and that issue resolved. Come college, I became a chronic pathologist locator and again at that time, you know, I asked my orthopedist and I you know, asked around. They said is there something sort of bigger going on here? And I was told no, you’re a dancer, you’re hyper mobile, you know? And anyway, it kept going like this where there would be an event and I would be a doctor in medical school. I was having syncopal episodes, very severe tachycardia, you know POTS is probably the diagnosis that I was having at that time. I was

given a Holter monitor, I was given everything but a tilt table test basically and then because my Holter results over the like two days I wore it were normal, they ended up deciding that I had ADD which seemed really hard to believe because I had made it through undergrad as a straight A student with no ADD diagnosis or medications, right? But I think I was having trouble concentrating because my neck hurts so much all the time and my heart was going all over the place in terms of my heart rate and it was distracting, you know? And this is just a classic example I like to share because with earlier diagnosis, not only is it so much better for the patient which is the main point but all this inappropriate care I received cost time and money, you know. There was just so much where I bring it up because it’s such in the best interest of even these insurance companies who I don’t care about at all but it’s in their best interest for us to be diagnosed early too, you know. It’s in everyone’s best interest and so you know, I really hope that anyone listening really feels empowered to like check out these diagnostic criteria, bring it to your doctor. You can have your doctor listen to this podcast even if you want, you know. We should all be on board with early diagnosis for EDS. But yeah, of course, when they put me on EDS meds which I think I took for a very brief period of time of course, I started having way worse tachycardia because now I was on Adderall so that didn’t go well at all and I had to get off that. And then finally, after my pregnancy and a subsequent additional knee injury, I think going back to work so soon first of all, 11 days after I had my daughter, I was an Orthopedic Surgery resident at the time so there’s no maternity leave unfortunately. An Orthopedic Surgery residency or I don’t know if there aren’t other residencies but I doubt that’s changed but yeah. But you know, I think it was just too much stress for the body type that I have in a way and I notice a lot of patients kind of have this story where something happened and they feel like they went off a cliff. It could be a viral illness, a surgery, a trauma, an accident like a car accident and they kind of feel like I just have never been the same since that and typically a lot of that is mast cell mediated and I will share with you. I mean I had tingling and burning pains, I was now vomiting constantly, I mean I could barely make it through a case without you know, food coming out, I was at times incontinent. I mean you name it, it was all happening, you know. My sleep was very abnormal, non-refreshing sleep and I ended up leaving my orthopedic surgery residency really wondering if I was dying because I had very very severe low back pain at the time. My neck pain got worse, my SI joint was flunking in and out with every step and was sharp stabbing severe pain and I would have bloating to the point where I would look like I was nine months pregnant again, all these kinds of things. And I ended up going to the hospital for a few different things after I left my orthopedic surgery residency. One was gastritis, one was actually turned out to be vocal cord dysfunction, and a friend of mine from medical school who had left medical school due to her EDS reached out to me and said, “You gotta go see Dr. Claire Francomano”. So for anyone who doesn’t know, she is kind of the country’s leading EDS geneticist and she took about a minute and a half to diagnose me. So, that was my diagnosis. So, I was already in my 30s, you know. And in medical school, I really wanted to be an orthopedic surgeon but I kind of wondered if my health would allow it. I had no diagnosis so at that time, I actually did get a genetics eval and rheumatology eval and unfortunately, I was just told that I was a hypochondriac.

Dr. Wong:

Wow.

Dr. Zingman:

Yeah. So, it took a lot and that’s for a very highly educated, highly motivated person which you know, with resources.

Dr. Wong:

Right. And you’re a doctor. People are telling you that you’re a hypochondriac essentially.

Dr. Zingman:

Yeah. I mean I can’t even imagine what it would be like for someone who doesn’t have a medical education, maybe doesn’t have any resources at their disposal. I mean it’s really a tragedy, it is. And people are suffering and it’s needless because this is not hard to diagnose.

Dr. Wong:

How do we listen better as doctors? How do we listen better as clinicians?

Dr. Zingman:

You know, it’s such a good question. I’m really of the belief that doctors are incredibly altruistic and on a whole just really good people who really want to help and that it’s actually the systems that so many doctors find themselves in that don’t allow the physicians to practice Medicine in the way that they might like. And so, I think it’s very hard as a physician who’s being put under pressure from your employer to see you know. five patients an hour or something like that to get to the bottom of something like this. You know, that’s why you know, I’m kind of outside of the insurance model. I want to be able to spend two and a half hours with someone if they need it. It’s just such a hard question and I really think the more that physicians sort of pursue leadership positions in these institutions and try to make institutional change is where this can happen and then all we need is for the doctors to just think of it. You just gotta think of EDS. It has to just be in your brain because what I was taught in medical school is it’s rare, it’s a shoulder dislocation or mitral valve prolapse and that’s not true. None of that’s true. Many patients with EDS do not have shoulder dislocations or mitral valve prolapse. They have belly pain, back pain, and insidious moving pain, you know?

Dr. Wong:

Yeah. I mean it sounds like it’s a very vague collection of symptoms and I’m wondering if there’s a spectrum overlap between a formal diagnosis of Ehlers-Danlos Syndrome and hypermobility in general, right? ? We all have friends that have some and my one joint is hypermobile so you know, do I have EDS or not?

Dr. Zingman:

Yeah and there is. So, there’s a diagnosis of hypermobile spectrum disorder which if a provider is filling out that diagnostic worksheet and the patient is falling kind of just shy of meeting the diagnostic criteria for EDS, then they should receive this hypermobile spectrum disorder diagnosis. And in terms of hypermobile spectrum disorder diagnosis and what does that really mean, I think that and I’ll kind of describe my treatment approach for EDS I’m sure in a little bit, I think the same approach applies. It’s just does that person need the echo, do they need the ophthalmology appointment, do they need genetic testing to rule out other types? And actually in the diagnosis, one of the most important things is asking questions to rule out other types so if there is a family history of cleft palate for instance, you want to be getting genetic testing on that person, if there is a family or personal history of early onset or congenital deafness, if there’s a family history of aneurysms, if there’s a marfanoid body habitus which means like super long arms and legs and what’s called arachnodactyly where they can kind of like you know, fold their thumb and it can stick all the way out the side of the hand with the fingers folded over it and you know, certain things which some people would by the way, hypermobile EDS, can do too and actually that sign, that Steinberg sign, is on the EDS diagnostic worksheet. But you know, thinking about other heritable connective tissue disorders, low ed sticklers things like that is important too and I think that’s where a lot of physicians get a little nervous about making the diagnosis when they’re not a geneticists but all you have to do is just order genetic testing and you can roll that stuff out and there are companies out there that have genetic counselors that talk to the patients and you know, we can really all do this. I’m sorry, I forgot the question.

Dr. Wong:

No. That I think answered the question. There’s probably more people out there with some spectrum you know, sort of variant or I guess not variant but hypermobile disorder, probably even more than EDS so it’s definitely more common than we realize. Now, let’s kind of get to treatment since I know that we want to kind of get into okay someone has EDS. someone has hypermobile syndrome. Dr. Zingman, how would you treat that type of patient?

Dr. Zingman:

So, I’m going to tell you my sort of treatment philosophy, an approach, and like any sort of classification that divides things into steps. It’s really more about utility in terms of thinking things through then it is absolute but the four stages are organize, stabilize, mobilize, dynamize. And so, the organized stage, the obvious part of it is we need joints to be in alignment. We can’t have people walking around with their SI joint completely out of alignment all the time, right? Or their shoulder just dislocated 100% of the time. We need to get those joints back into alignment. The less obvious parts are restoring the muscle contractility, making sure the firing patterns are good, making sure that the breathing mechanics is really good, the diaphragm needs to be able to drop when the person inhales. If the diaphragm is kind of hypertonic which if the pelvic floor is not compliant, it will be but sometimes it is just because of the hypermobility in the ribcage then the patient kind of has all these kind of like me with my leg up as that eight-year-old little ballerina like the patient has all different kinds of options available to them of how they’re going to fill their lungs with air, you know? They can move their shoulders in weird ways, they can externally rotate their rib cage, arch their back you know, that hypermobility sort of creates all these avenues for dysfunction in terms of breathing and I think correcting all of that with a very astute physical therapist is hugely important. The second part, so that was kind of part one of organized stage was sort of like getting things into alignment in terms of a musculoskeletal organization, the second part is really more about like the nervous system and what we tend to talk about with with Ehlers-Danlos Syndrome is with the nervous system. For our non-medical folks listening, you have kind of that you’re parasympathetic which we typically think of as like rest and digest and then you have your sympathetic which is sort of fight or flight like chased by a bear part of your nervous system. And so, you can imagine if the average person’s job in being vertical all day is stacking wooden blocks, the EDS person’s job in being vertical all day is stacking water balloons, okay? It’s just a harder job alright and so the nervous system is under more strength and in addition to the dysautonomia, specific things like the pots which I mentioned earlier for which there are medications, there’s also sleep hygiene, sleep management, sometimes sleep studies people with EDS are at increased risk for sleep apnea, there are osteopathic techniques that you can kind of interact very directly with the biggest nerve and then there’s also like breathing exercises and vagus nerve exercises and eastern medicine approaches and integrative approaches and functional medicine approaches that all deal with kind of balancing sympathetic tone so that the body’s not just in this constant fight-or-flight state. And then the third part of organize is minimizing inflammation kind of generally so that’s gonna include screening the patient for mast cell activation syndrome and treating it. So patients with EDS have a higher incidence of rheumatologic disorders. Things like rheumatoid arthritis, Sjogren’s, things like that so they should really be tested for that if there’s any signs of that and that should be managed and then in this phase also is all of the gut dysbiosis and all of the microbiome medicine making sure that any dietary changes whether it’s a low histamine diet, an anti-inflammatory diet and sometimes the process of minimizing inflammation really means bracing something you know, bracing the pelvis, raising the neck or the back, right? And so, if you kind of think of it in those organized stage, one with three parts to it, the musculoskeletal, the nervous system, and just general inflammatory management, you’re going to find yourself going down a lot of avenues as the patient and as the provider to sort of bring together some good holistic management. In the stabilized phase is where we want to keep you there, right? We want to get you organized. We don’t want you to keep falling backwards like you take two steps forward one and three quarter steps back every day, right? And so, from a physical therapy, Manual medicine standpoint, we use muscle activation techniques in our office in addition to having some fabulous physical therapists to really understand hypermobile bodies and how to do neurologic retraining and you know, teach people how to maintain proper alignment of their musculoskeletal system because if you’re having a constant you know, we know that people for instance who have car accidents and are polytrauma patients have all kinds of stress hormones and you can detect these for a long time. Well, if you’re in some sort of a state like that all the time, right, because you’re constantly having joints slip out of place and you’re, you know, you’re never going to really be able to heal and really start to feel better, right? You’re always going to be doing symptomatic management. What I want for my patients is that they’re baseline moves, not just that we make you feel better for the next hour, right? Okay. And then, in the mobilized phase, we’re starting to talk about more traditional PT where you actually get people moving and dynamize is sort of like that next stage. Okay, now, we’ve got you walking, right? You can get in and out of your chair, you know? What do you want to do, you know? You want to do pilates, let’s start working on that. You want to do gardening, let’s start how are you going to get up and off the ground right, up and down off the ground so that’s where you sort of get to have some fun. Okay. That’s my treatment approach.

Dr. Wong:

That’s so great and thank you so much. That’s so comprehensive and really touched on a lot of points there that we can take a deeper dive into some of those. I think there might be some questions from the listeners about and this is probably going to be different for each person but how quickly can someone potentially get from say organize to stabilize or it does it depend on each person and their body and everything?

Dr. Zingman:

Yeah. So, with the organize, stabilize, you never leave either of those stages. You take a little while to get to mobilize, right? Like a person may take three weeks or they may take three months to get to the part where we’re actually working on let’s say gait mechanics, right? Because maybe first, we had to do you know, part of of stabilizing that person may have included doing something like prolotherapy or PRP to get their SI joints more stable or their shoulder more stable and have time for those injections to sort of you know, work. It’s not like you get injected and you immediately have the result of the injection, right? Those injections for those who don’t know are stimulating your body to do healing and lay down some good matrix and then your body needs to heal, right? So, these things can take time but it really kind of depends on where the person is starting, you know? If the person isn’t able to sit for more than two minutes without pain, that’s probably someone who’s gonna take a little while until they really are in the mobilized phase but I tell people to think of organize and stabilize to use a little sports and ballet analogy like a soccer player never stops doing drills to practice shooting goals, right? A ballerina at any level still gets up and goes to the bar and does lias and relevees and tanji’s every day and that’s organizing, stabilize. You always are coming back to that. It’s just that now, you’re also playing in the game or performing on the stage too.

Dr. Wong:

Thank you so much and then this is just a kind of a basic question but I think I was always wondering about how, because EDS is a genetically determined connective tissue disease, is there a way sort of epigenetically to modify the connective tissue function given someone has EDS? I suppose you know, PT and all the amazing things that you do in your clinic would do that. Is there a way to kind of change the way the tissue functions or is it more of a like you said, kind of ongoing organize, stabilize, et cetera.?

Dr. Zingman:

I’m gonna give you a good solid I hope so.

Dr. Wong:

Yes.

Dr. Zingman:

I don’t know. There may be someone smarter than me, who knows. That’s certainly possible but from an epigenetic standpoint, I mean we’re basically talking about okay, you have these genes but how are they expressed? And I think that epigenetics probably plays a huge role in EDS and I think that because of what I said earlier where you see that people go through an illness or a stress, some sort of life stress, trauma, or surgery and you know, the surgery was on their thumb and now their neck pain and their itchiness and their hives are worse or you know whatever it may be and obviously, you know, it’s very clear that there’s some variability in how the same genetic finding might reveal itself. So in other words, siblings, right? Like you know, theoretically, if they all have ED, they all have the same genetic mutation, they should all have the same severity of symptoms but they don’t, you know. And why is that? And so, I could tell you I have a foundation called the Ehlers-Danlos Syndrome Research Foundation and I am very lucky to have Ann Maitland, who’s an immunologist who specializes in EDS and MCAS on the board and you know, she has some really fascinating ways of sort of explaining how you know, the immune system gets sort of peaked and like for instance you know, increased intestinal permeability, right? So if your cells in your intestine are held together by connecting tissue and that connective tissue isn’t of the fantastic integrity that we wish that it was then, maybe there are some little particles that are kind of seeping through between the cells, right? And so, the mast cells are sitting there getting these signals like ah, we’re under attack like, you know? Stuff from the outside is coming in and it’s not coming through the right channels and they’re constantly activated and and what does that do from an epigenetic standpoint in terms of the connective tissue? Like, are people having more subluxations once they develop mast cell activation syndrome because their tissues are more inflamed because the mass activation syndrome is causing inflammation in a very direct way? Or is part of the story that there are some epigenetic changes and the actual structural integrity of the connective tissue and the way it’s forming is somehow changed once the immune system gets evolved in that way? These are questions that would require lots of research dollars that unfortunately don’t exist yet

but I really hope that in my lifetime, I get to learn the answer to that question. I really do. I don’t have it today.

Dr. Wong:

Same here, thank you. We’ll be both hopeful of that. I guess along the lines you know, of that, we know that and you mentioned this a couple times already and you know, talking about this but there’s this big connection, right? Between like you said, leaky gut or it’s an

increased intestinal permeability, small intestinal bacterial overgrowth, where do you see…

Dr. Zingman:

SIBO is big In the EDS population, yes.

Dr. Wong:

Yeah and do you see that resolve with EDS? Is it possible for SIBO let’s say to get better long term or is it one of those things where it’s again kind of a maintenance thing? And I know that’s kind of a loaded question but..

Dr. Zingman:

It is. So, I’m gonna answer it based more on myself as a patient than myself as a physician. The reason being, I’ve only been seeing predominantly EDS patients for just under two and a half years and so, yes, some of these patients, their gut health has gotten amazingly better with the mast cell treatment and the SIBO treatment for the ones who needed it but in terms of like does their SIBO come back? Like I don’t have enough length of experience with them but I can tell you that I was diagnosed with SIBO right before my EDS diagnosis and it was actually part of how I you know, all that stuff that was going on was sort of how my friend sort of ended up you know, saying you really got a lot going on girl. I think you have EDS, right? So, I reintroduced onions two months ago and I stopped. I went on the low FODMAP diet the summer of 2015 and it’s now 2021. It took me that long but I did it, you know?

Dr. Wong:

Congratulations.

Dr. Zingman:

I can eat like high FODMAP foods now and they don’t bother me at all as long as I stick with low histamine, right?

Dr. Wong:

Got it.

Dr. Zingman:

That’s how long it took, you know? I mean my gut just took a very long time to heal and I really think it was the addition of the mast cell diagnosis and the low histamine diet and the mast cell men which that started happening summer 2019. So, I have finally now that I’m on Xolair which I really needed in addition to my oral meds. I am finally able to like have a little more diversity in my diet with regard to the histamine as well but I would say I am finally healed from SIBO now.

Dr. Wong:

Congratulations. I think we’re going to give you a virtual applause, clap here. It is a very flustering diagnosis for a lot of people. For those listening, we know that you know, a lot of people are trying different nutritional plans and you know diets and sometimes it’s like one step forward, one step back or two steps forward, one step back but you know, one of the things out there that I think your story really illustrates nicely is don’t give up hope, you know? Keep trying, keep experimenting and it sounds like for you at least, Dr. Zingman, that low histamine diet reducing that mast cell baseline inflammation allowed you to tolerate more FODMAPS over a number of years.

Dr. Zingman:

Yes, absolutely. And I think that’s where you know, as I was trying to come up with some sort of framework that I could like sort of give other people and also give myself for how to approach these patients and I was really thinking about it you know, if you always come back to organize, you’re never going to forget about the gut, you know? Like..

Dr. Wong:

Yeah.

Dr. Zingman:

Yeah, so you just never forget about the gut.

Dr. Wong:

I love that and what are some takeaways that you would say? Because there are people that are struggling out there with with EDS or other chronic illnesses what are some of the key takeaways that you recommend for listeners?

Dr. Zingman:

So, I would say anyone who is able to find a good manual PT or an osteopathic physician, I think that is really paramount in terms of you’re gonna need someone who’s able to lay their hands on you and be able to tell you, “Hey. Your sacrum is rotated. Let’s try to work on that.”, you know? You’ve got an iliac up slip, your foot’s out of alignment you know, and really head to toe. This person needs to lay their hands on every part of your body from your you know, looking at how your skull bones are moving to how your great toe is working, right? And don’t assume anything is not important. If your thumb is subluxed, that can be affecting your neck, you know? And that is my first piece of advice, is kind of like from a joint standpoint, ignore nothing, treat as much as you can and a really good PT is just so invaluable for this and it’s not that the PTs who don’t specialize in EDS aren’t really good PTs but I just mean someone who’s really good in terms of understanding EDS. And then, my other advice is you know, one of the things that a lot of patients ask me is like how can I get the most out of my doctor’s appointment? I have such a long list of things that need to be addressed and you know they kind of don’t know where to begin and they certainly don’t feel like the doctor knows where to begin either so you know, you’ve got sort of a problem there and and what I tell patients is look you know, start by thinking of it as a partnership and a long-term relationship with your doctor. You’re not gonna get everything you need in one appointment or two, you know? And so, be really open and honest and like figure out together what the reasonable expectations are so the way that physicians are trained to approach an appointment is typically predominantly based on a chief complaint, right? And so, they’ll say what’s bothering you the most, right? And what’s bothering you the most that day may not be your most pressing issue and you may want to just communicate that really plainly, you know? Well, what’s bothering me most today is my ankle because I rolled it yesterday but I’d actually really rather focus on this ongoing issue I’ve been having where I just feel like my heart is racing and beating out of my chest and would it be okay to just save the ankle for another day? I’d really like to focus on this heart racing issue or I’d really like to focus on temperature dysregulation and let them know, you know, I have a lot of issues, I think I probably have some sort of syndrome I haven’t been diagnosed yet, I think maybe it’s EDS

and I know we’re not going to get to everything today but I’d like to have time to talk to you about all these things at some point. How often should I come back in? Right? Because if we all approach it both on the physician side and the patient side as a partnership, then we start thinking about communicating with each other about things like you know, how often should I come in? How long should you know, my appointments be, you know? What’s a reasonable time frame? Hey, you gave me seven recommendations for referrals, like what’s a reasonable time frame to get those done? And what should I do first, you know? And just ask those questions.

Dr. Wong:

I love that back and forth dialogue, right? That’s a true partnership. That’s where healing really happens so thank you for that advice. That’s really great for all the listeners out there so thank you so much for all these you know valuable nuggets and also just outline two of like how to approach EDS, how to approach a chronic issue like EDS and I think you’ve really helped the listeners here cultivate and engender some hope so thank you so much and hopefully there’s more awareness of this too as we kind of move forward through time. So, we have some fun, always end with some fun questions here so..

Dr. Zingman:

Oh boy.

Dr. Wong:

So Alissa, do you have a morning routine and if so would you mind sharing that with us?

Dr. Zingman:

I knew you were gonna ask me this because you told me. And my morning routine is roll out of bed and put my clothes on to be totally honest.

Dr. Wong:

That’s great.

Dr. Zingman:

But, I actually have a very extensive daily routine. I just don’t do it in the morning because I’m not a morning person so I do an Epsom soak almost every single day. While I’m in there, I have some little like stress balls that I’ll kind of put under certain ribs that feel out of place and I’ll try to like breathe into the ball and like you know, use my breath to kind of get my ribs back in alignment. I do a lot of reading in there. I listen to podcasts in there, you know, stuff like that. Ezra klein, by the way, is one of my favorites. I think that was a little tidbit but yeah. And then, I do a certain number of like isometrics that I do almost every day, not every day but almost every day. Some for my neck, I do my multifidus you know, just like a couple specific isometrics for my neck and then I have had episodic shoulder instability so a couple of times a week, I’ll do some little- I mean it really takes me like 15, 20 minutes at this point, it’s so quick but I do it a few times a week and it just keeps my shoulders good but the breathing work and the breath work that I do in the Epsom soak, if I don’t take the Epsom soak, I still do the breath work pretty much every day. I’ll just lay on a yoga mat and do it. It is super key and then I use a half foam roll and I kind of put it and please, if you’re gonna do this, if you have EDS at home like have a physical therapist supervise you the first time because if you put it under your L5, you can cause your L5 to kind of slip forward out of place. I don’t want anyone to do that but I’m going to tell you what I do is I put it under the top of my sacrum and kind of use it to traction my sacrum away for my low back to just get a little like distraction there and that really helps too.

Dr. Wong:

Okay. So, you start at L5 and then you’re moving downward towards your sacrum or?

Dr. Zingman:

You don’t want it under L5.

Dr. Wong:

You don’t want it under L5.

Dr. Zingman:

You want it under like s2, 3.

Dr. Wong:

Got it. Okay, so in the sacrum. Okay, got it.

Dr. Zingman:

Yeah because if you put it under the lumbar spine, you can get anterolisthesis.

Dr. Wong:

Got it. Okay, thank you.

Dr. Zingman:

If you’re hypermobile, you’ve got to always be watching out for anterolisthesis and actually another little kind of like pro tip, if you’re going to PT and anytime you kind of arch your back meaning like stick your tailbone out behind you, you have a lot of pain, good idea to get a flexion-extension x-ray of that lumbar spine, look for anterolisthesis and you may need to avoid any exercises where you do anything other than a neutral spine. In general, I think people with EDS should be doing almost everything with a neutral spine and maintaining a nice neutral spine with the rib cage perpendicular to the floor and not tipped forward or back.

Dr. Wong:

So a little sub question from that, we might have some yogis or buddy and yogis out there. Are there any maybe favorite asanas yoga poses out there that you like as your personal favorites that would be safe for people with EDS?

Dr. Zingman

So, the yoga EDS question is so interesting. It’s more interesting than it has any business being because there are certain people who are hypermobile who feel great doing yoga. However, there are so many modifications that most people with EDS need in order to do yoga, in order to avoid just kind of leaning into their hypermobility that it’s really tricky so you would need someone who really understands hypermobility to kind of watch you be doing that. I used to love yoga and it started just honestly being too painful for me and and I do pilates now instead and that really helps me because I’m working on core stability but one thing I would say for people who love their yoga, if it makes you feel good, then it’s probably good for you. If It makes you hurt, it’s probably not you know, it’s kind of almost as simple as that. But one thing that I will say for people who do it who are hypermobile, in yoga we tend to really want to open the chest and in EDS, we actually tend to kind of need to do the opposite because our chest almost opens too much and we end up sort of stuck there with this like wide open chest and our abs just don’t have a prayer because they’re on a stretch and so if you feel your rib points down right below the bra line for the ladies, just imagine that for the men, but if you feel your rib points, they should be very close together. They shouldn’t be spread far apart you’re floating ribs at the bottom and so when you do your yoga, focus on keeping those rib points a little close together and using your muscles to sort of bridge that gap between the rib points so that you’re not leaning into that hypermobility and you don’t want to be like squeezing your shoulder blades together. You want to have nice wide shoulders, wide in the back and wide in the front.

Dr. Wong:

Thank you so much and another fun question that we always have here is what do you do every day to cultivate joy? And you’ve mentioned many things already but..

Dr. Zingman

Yeah. I’m a pretty joyful person I think. I really enjoy seeing my patients I have to say so I am one of the very few people I think who’s lucky enough to really like going to work so that’s one thing. I mean certainly the thing that brings me the most joy in my life is my daughter. That’s just, you know?

Dr. Wong:

Yeah.

Dr. Zingman

She’s just, I mean like most parents, right? I just use the cat’s meow and so, I’m so grateful for all the time I do get to spend with her because I did at one point in her life work like 100 hours a week and I don’t work 100 hours a week anymore and the best thing about not being able to do that I mean I sort of wonder if I didn’t have health problems I’d still be working you know, maybe 70 to 100 hours a week. I can’t do that so I don’t and all that extra time is family time and that’s just to me, that’s the best and I love cooking and baking and all that kind of stuff and I make a lot of my own food even like bread and pizza crust and pie crust and things because of the diet and being so careful about what I put in my body and so that’s what I really love doing that with my daughter. Yeah. My husband’s pretty good too.

Dr. Wong:

Shout out to your husband as well. Great.

Dr. Zingman

Yeah.

Dr. Wong:

And your daughter, your husband, Epsom salt baths, listening to some podcasts music, books in there.

Dr. Zingman

Yeah.

And little pilates on the side. That’s great. How can listeners learn more about you, Alissa, and work with you?

Dr. Zingman

Sure. So, there’s two places you can kind of find me online one is the foundation, edsrf.org, Ehlers-Danlos Syndrome Research Foundation so egsrf.org and the other is my practice website. My practice is called PRISM Spine and Joint. PRISM stands for prevention, rehabilitation and Integrative Sports Medicine. We’re in downtown Silver Spring and our website is prismsj.com or prismspineandjoint.com

Dr. Wong:

Prismsj.com, great. Thank you so much. Well, thank you, Alissa, so much for being on today. It’s been such a wonderful conversation, very enlightening and I thank giving a lot of hope to our listeners so, thank you so much.

Dr. Zingman

Thank you. Thank you for having me and you know, thank you for everything you do for all your EDS patients. We share a number of patients so I know you know what a committed and caring physician you are and asked someone with EDS who has seen you myself, full disclosure. It’s just so great you know, to be able to share patience and to have you in the East so thank you.

Dr. Zingman

Thank you, Alissa. Alright. Well, thank you everyone we’ll talk to you soon.

Dr. Wong:

Okay. Bye-bye.