Connective Tissue Disorders and Lipedema with Karen Herbst, MD (Ep 104)

Dr. Linda Bluestein: [00:00:00] Welcome back, Every Bendy Body, to the Bendy Bodies podcast with your host and founder, Dr. Linda Blustein, the hypermobility MD. Today we're going to be talking with Dr. Karen Herbst. I just have to tell you that Dr. Herbst was referred to recently by one of the world's authorities on mass cell activation syndrome as the world's foremost authority on inflammatory lipodystrophies.

So I know you're going to be really excited to hear from her. Dr. Karen Herbst is at the forefront of unraveling the complexities of lipedema, Durkheim's disease, and other diseases of adipose connective tissue, focusing not just on lymphatic and vascular comorbidities, but also on metabolic and hormonal factors, dysregulation of the immune system, and the genetics underlying chronic diseases, including hypermobility syndromes and mast cell activation disease.

She notably led an [00:01:00] NIH sponsored conference in 2019 to establish the standard of care for lipedema in the United States. Dr. Herbst completed her Ph. D. in cell physiology at the University of Iowa, her medical degree at Rush Medical College, and her residency and combined research and clinical fellowship in metabolism, endocrinology, and nutrition at the University of Washington, an innovative campus known for receiving more federal research dollars than any other U.

S. public university. I am so excited to chat with Dr. Herbst today because she has such an incredible background and expertise that will give us insights into the relationship between connective tissue, mast cells, and the immune system. As always, this information is for educational purposes only and is not a substitute for personalized medical advice.

Be sure to stick around until the very end so you don't miss any of our special hypermobility hacks. Let's get going! Let's jump into this conversation with Dr. Herbst. Just can't wait to find out about lipedema. What is this [00:02:00] exactly? And why is it so commonly misdiagnosed?

Dr. Karen Herbst: Lipedema is pretty complex. It's not, there's not a simple answer to that.

Uh, I, I think I could just say that there is some obesity associated with lipedema and it tends to get misdiagnosed as, as just regular, um, non lipedema obesity. And it's also because it sounds like lymphedema, which is why I'm saying lipedema to differentiate between the two where lymphedema is swelling of the legs and, and possibly of the arms.

Um, it gets confused with that too, but so kind of in a nutshell, lipedema is, a disease of the, the subcutaneous fat tissue. So on the outside of the body, it primarily affects the legs and the arms, but it can affect anywhere on the torso as well, just not as commonly. It is a very nodular fibrotic tissue.

And it also, because of its, its fib, [00:03:00] fibrotic content, which results secondary to inflammation. So whenever you have inflammation, it ends up resulting in fibrosis that it kind of tethers the tissue. And so when it's pressed on, it's very tender. And there's probably also some component of a neuropathy in there as well.

So it's increased tissue, arms and legs, very nodular, fibrotic, tender tissue, primarily in women. And it tends to start around the time of puberty, which is the time when fat is increasing but also hormone levels are increasing. It can happen in pregnancy when fat is increasing and hormone levels are increasing and then also in menopause where hormones tend to be decreasing but testosterone is increasing and fat is increasing as well.

Dr. Linda Bluestein: Okay, and how does that differ from Durkheim's disease?

Dr. Karen Herbst: So Durkheim's disease is, it's on the spectrum of lipoedema and I'll, and the reason I say that is because in, I think it was 2016, I worked with, um, one of my students at the [00:04:00] time who's now a doctor, Karen Beltran, and we went back through my charts and said, how many women have I seen with lipoedema?

How many with? Durkheim's disease and what's the difference between the two? And we found that about 6. 6 percent had both. So sometimes it's very difficult for me to differentiate between the two. And Durkheim's disease is more of a grab bag of painful fat. So people who have, for example, multiple lipomas that are non tender, It runs in their family, have familial multiple lipomatosis, and they're fine until they develop some sort of inflammatory condition like obesity, or they undergo a surgery or a trauma, a very stressful event, then their lipomas become very painful.

So it's inflammation plus the multiple lipomas, or it's somebody who perhaps has an underlying immune dysfunction. So they don't Turn off their inflammation very well, so they have a traumatic event, their [00:05:00] inflammation goes up, they stay inflamed, and their, the fat tissue is, is basically where you can appreciate that there's inflammation in the body by feeling the nodules in the tissue.

So the nodule, uh, Durkheim's disease is very nodular, often you get, um, lipomas, you can get angio lipomas, and it often is combined with obesity. And it's just, and it affects more of the torso, whereas lipoedema affects more of the legs and the arms. So that's kind of how we differentiate between the two.

And also in Durkheim's disease, they have more pain conditions like migraines, IBS with significant abdominal pain. Okay,

Dr. Linda Bluestein: and of course this is the Bendy Bodies podcast, so we talk a lot about connective tissue disorders like hyperbobal EDS and related conditions. What is the connection with lipoedema and connective tissue and connective tissue disorders?

Dr. Karen Herbst: It's a great question. And it's one of my favorite things to think about. But fat [00:06:00] tissue on the outside of the body is a connective tissue. And it's often known as loose connective tissue, but it can be known as areolar connective tissue. And so now I'm to the point where I just call, uh, lipoedema connective tissue disease.

And the reason is because we think of fat as just being a bunch of fat cells, but that's not true. There's a fat, including superficial connective tissue, deep connective tissue, and then all the fibers that make up the nodules. And then, and even in the connection between the fat to the skin. I, I don't, I think I was seeing it back in like, I know I was here in Arizona and I came here in about 2013 and I was in clinic and these ladies were coming in and they were super bendy.

And I was like, huh, you know, what, what do you have? And so I started, uh, doing the BITEN score and BITEN criteria on my patients. And I started to realize that, gosh, a lot of these ladies are, are, are bendy. So I, um, again, in the, that paper with Karen Beltran, we [00:07:00] documented it and it was close to 60%. And then I've just re documented it again in another, um, hundred patients and there's about 75 percent that are bendy.

And I think they can become bendy for different reasons. So I'm thinking genes. So, um, we're actually looking at the, the starting to look at the genes right now to see how many have mutations in like, for example, TNXB or any of the collagens. And then, um, I think it also can be secondary to inflammation.

And I. Think that they're associated because a lot of times when you have connective tissue mutations, you have a loss of elasticity. So it, you know, the tissue doesn't bounce back like a rubber band. And so fat grows and the body goes, okay, I'll be compliant. I'll, I'll handle that. And it just doesn't have that pushback.

And fat needs to be pushed because it responds to being pushed. And it tends to either not, not grow [00:08:00] or, or, uh, die off when it's pushed. And that doesn't mean that you can just. Push everybody like put everyone in compression and there's your cure for lipoedema. It's just that And that's because there's so much fibrosis that you can no longer push it like you used to But if it doesn't have that skin that tension in the skin It's just gonna keep growing and growing and growing and growing and growing and then you can't lose it And if you do lose it, you're gonna have the sagging skin Just as if somebody who had obesity had bariatric surgery or a liposuction So I think I mean they occur together Does one cause the other?

Does the other cause, you know, I don't know, it's, it's the chicken and the egg. Um, but I do think there, you know, because fat is a connective tissue, there, there is a connection between the two, it's just nobody's found it yet. And not a lot of other people are looking at it, which, I mean, we've published now three different papers where we state that about 60 percent of women have this and then the latest is [00:09:00] not published for 75%.

Why aren't other people looking at it? I have a friend in Spain and he says it's about 80 percent in his population.

Dr. Linda Bluestein: Wow. Percentage of people with lipedema that appear to be on the hypermobility spectrum is what you're saying. Exactly. Yeah. Okay. I just want to make sure we understand that. Okay. Okay. Uh, that's really fascinating.

Is it possible to have lipoedema without obesity or do they always come together? Okay.

Dr. Karen Herbst: Nope. They don't always come together. And I think lipoedema is kind of a mixed bag as well of how do you get lipoedema. to a point where we diagnose you with lipoedema. And we have a lot of, um, very small women who we diagnose as stage one.

So stage one means the skin is still really smooth, but you can feel all those little pebbles on the arms and legs. And then stage two, you get more dimpling, more fibrosis, where the skin is actually being pulled down because the fibers are contracting. And then stage three, you're actually forming lobules [00:10:00] of skin and tissue.

So it's those women with stage one. That, that I think may have some other pathway to developing lipoedema versus the much larger women who have obesity in stage three or stage two. And it's probably linked to the immune system again.

Dr. Linda Bluestein: And what's the difference between lipoedema then? Cellulite or, or the connection between them if there is one.

Dr. Karen Herbst: So there, so if you look in the German cellulite literature, or even in the Italian cellulite literature, they put it on the same spectrum. Mm-Hmm. So they're both, um, fibrotic, but the cellulite tends to occur in places like the buttocks. Uh, the posterior thighs, uh, the lateral thighs, sometimes the anterior thighs, but, but a lot of times in the posterior aspect of the body, whereas lipidema is kind of diffuse everywhere.

So it's like cellulite on steroids. And I [00:11:00] don't think that a lot of people talk about, uh, lipidema in relation to cellulite. Because if, if we do that, then insurance companies are going to think, Oh, this is just cellulite and they're not going to cover treatment. So we kind of shy away from it, but there are definitely some similarities.

And when I was first trying to understand lipoedema, I was reading the cellulite literature.

Dr. Linda Bluestein: And people that have lipoedema, do they have other signs and symptoms that we should be aware of?

Dr. Karen Herbst: They do, they can have many, especially if they have Mast Cell Activation Disease or syndrome then, you know, then it's, it's, you know, widespread, but common things that we tend to cite are that they have easy bruising.

And the reason for that is they're part of their underlying pathophysiology is that they have leaky vessels. And we showed that in a biopsy study and then another group out of, uh, Austria showed [00:12:00] that actually using a functional assay and AI. So there's at least two studies, there might be a third. And That means that these, these vessels are very weak and that could be due to the connective tissue, uh, variation, some sort of mutation, or it could be due just to widespread, widespread inflammation.

And I, we don't know the difference right now. It's too early. Um, those studies are too early. And there's also, uh, pain, as I mentioned, uh, they tend to have pain either, um, all the time, or, um, especially at the end of the day when their legs are starting to swell. Um, but often with palpation or their cat walks across their lap and they feel that that's painful.

Their husband wants to put his arm around. Her, uh, her and, and, and that's painful. And that's why they actually are seeking treatment because these are, you know, that, that reduces their quality of life. And then I did mention swelling. They tend to have swelling, um, by the end of the day. So if they [00:13:00] stand too long, um, walking and compression does help.

Um, if they sit too long, sometimes they can also get. And there is controversy of whether there is edema in lipoedema. So in the U S we think that there is, and actually we just finished a research study that I think will be very helpful in supporting that and that. Um, but in Germany, they, they, they, There's a group that absolutely denies there's edema and lipedema, so the battle goes on, but that actually is good because it makes you work harder to really prove, you know, when, when things are true.

So easy bruising, pain, swelling are, I would say, three of the most common things.

Dr. Linda Bluestein: Now, when you're working up lipoedema, what kind of things are you looking for? What kind of lab tests are you doing? What kind of studies are you doing?

Dr. Karen Herbst: So lipoedema remains a clinical diagnosis, which is unfortunate. We don't have a biomarker.

We don't have good imaging studies that can help us [00:14:00] differentiate between lipoedema and non lipoedema fat. There is some really interesting work, um, coming out of Vanderbilt. Um, Shelly, Krasensky's work, where they've found increased tissue sodium in the tissue, much more so than in obesity. But that's really, that's not available for just regular clinical diagnosis at this time.

When I look at labs, uh, the lipid panels tend to be, um, awesome. The hemoglobin A1C or other indices of prediabetes or diabetes are completely normal. Uh, CBC is normal, Uh, Comprehensive Metabolic Panels, Normal. Every once in a while, sometimes I get a compliment. Uh, so I get a CH 50 or a CH 100, which just looks at the whole compliment pathway that often is elevated, but I've done some intense work in the compliment pathway itself through Cincinnati Children's Hospital.

And really there was nothing [00:15:00] consistent that I could find. So I kind of gave up on that. Um, but we do know that, um, compliment actually. mediates the interaction between the macrophage and the adipocyte. So I'm sure that compliments involve somehow, we just don't understand more than that. So labs, I like to get a CBC with differential, a comprehensive metabolic panel.

I like a fasting insulin level and a hemoglobin A1c and the reason, and a lipid panel. And the reason for that is metabolic disease often occurs concurrently with lipoedema. And I want to try and get that metabolic disease under control because it is my opinion that insulin resistance and inflammation of any kind promotes the growth of lipoedema.

So I'm not looking for anything lipoedema specific in labs. I'm really looking for other diseases associated with it. And I also look for, I ask them about allergies. That's a, that's a big deal. You know, they say, I don't, I don't [00:16:00] have any allergies to medication. I say, well, what are you allergic to? And you know, anything in the environment or food?

Oh yeah, I'm allergic to, and they start listing, blah, blah, blah, blah, blah. And I think, okay, Maso, now I'm onto Maso. And they often have a component of autonomic dysfunction when they have mast cell. And then on exam, um, you know, you're, you're bending them. So, um, and I often send them to allergists. I like them to get tested for food because if they're eating some kind of food that they shouldn't, that's increasing their inflammation, that would not be good.

But I usually don't do those labs myself. I really like them to do the, the, the patch testing or the prick test. So I wish I had like something I could tell you that would be great for identifying lipidema, but we, we just don't have it yet.

Dr. Linda Bluestein: Well, I was smiling when you were talking about compliment because the calocrine gene, uh, research out of the Norris lab just came out.

And of course then there's a connection to another connection to the compliment system. Um, and I guess too, I would love to, when you said, I think you might've used the word awesome or I can't remember the exact word that you used, but, but when you talked [00:17:00] about the lipid panel, are you, are you finding certain patterns with that or

Dr. Karen Herbst: not really?

No. So, so we actually published a paper showing that as you, um, increase in stage, but also increase in weight and BMI, that the lipid panel does get a little off. So the HDLs tend to decrease a little bit. Um, the LD, uh, the LDL, the triglycerides increase a little bit and the LDLs I think stay the same or increase a little bit too.

It's not, it's not dramatic and um, these women who have, uh, BMI's 40 or higher, um, don't have diabetes. So the, the subcutaneous, um, adipose tissue is somewhat protective against prediabetes and diabetes.

Dr. Linda Bluestein: Interesting. Okay. And in terms of autoimmune disease, what's the relationship between lipoedema and autoimmune disease if there, if there is one?

Dr. Karen Herbst: I wish I knew, but if I get an ANA, it's, it's, it's [00:18:00] generally negative unless they have an associated disease. with it. It's not due to the lipoedema. So, so if they do have an autoimmune component, it's not going to show up as an ANA. There's got, there's probably something else going on that we just don't understand.

Dr. Linda Bluestein: Okay. And does lipoedema always progress or does it sometimes just stay stable?

Dr. Karen Herbst: That's a great question. I'm laughing because that's also a point of contention. Uh, Often, I think what happens with lipoedema is that there is a, there can be an increase in weight and BMI over time. But I think that's really due to inflammation rather than, um, primarily due to lipoedema because if you can do bariatric surgery or give them a GLP 1 agonist, you can get a lot of that weight off.

And I know there's a lot of women, uh, women with lipoedema are very smart. They, they know [00:19:00] themselves very well. They are very. Um, usually very careful with, especially if they know they have lipidemia. If they don't know, it's, it's, it's got grab bag, but if they know they have lipidemia, they're very careful with what they eat.

They're very careful with, um, how they exercise. And there's a lot of them that can just stay in the state, the same stage. And if they do progress, say they're in stage one and they start looking like a two, then they can, um, just work a little bit harder on their diet. Maybe they had a little laxity in their diet and, um, just keep up their exercise and they can get it to go back.

And manual therapies are also helpful to help maintain it like manual lymphatic drainage, um, in some, not all, um, but deep tissue therapy to treat that. The fibrotic component seems to be very helpful and that can help somebody stay in the same stage or the same place their whole life. So the answer is no, you do not need to progress.

Can you progress? Yes. Oftentimes due to the presence of [00:20:00] inflammation from many sources.

Dr. Linda Bluestein: Okay. And let's dig a little bit more specifically into what you were just saying about nutrition. I know you've published a lot of really great papers on the topic of treatment of lipoedema and nutrition specifically.

What are some of the things that you think are most important for people to do?

Dr. Karen Herbst: I would say the most important thing to do for nutrition for lipoedema is to eat well. And I think there's all sorts of different ways to eat. And the, the ladies who seem to do the best are either on an anti inflammatory, uh, plant based diet.

And these are, you know, these are, they're very, very careful. They don't stray off the diet. They're, they're just, they, they love it and they're anti inflammatory and that's that. And that works for them. Other, um, Eating plans that are very successful include the keto diet and variations thereof. And also, intermittent [00:21:00] fasting is very helpful as well.

And a lot of women combine keto with intermittent fasting. The only problem I have with keto is that I would say more women go off the keto diet and then regain weight than the women who are on the plant based anti inflammatory diet. So I think that a lot of the women who choose that plant based anti inflammatory diet, that's how they like to eat, that's how they grew up eating, and they're very comfortable in that space.

Um, you can find the same thing with the, um, in women who have the, ketogenic diet, but it, It just seems like so many come in and they say, Oh, I, that didn't work for me. And I said, well, why, why didn't the keto work for you? Well, you know, Christmas came along and I had a few carbs and then I did, you know, and then I went off and, and so that's the, I find it's a little bit harder to do keto.

Especially if nobody else in the family is doing keto at the same time.

Dr. Linda Bluestein: Yeah. Yeah. Yeah. No, that, that definitely makes sense. And when you're talking about anti [00:22:00] inflammatory plant based, um, what about fish? Would that play a role in there?

Dr. Karen Herbst: That absolutely pescatarian is, is, I would say that's, that's in the same space.

And sometimes, you know, people on anti inflammatory diets eat meat as well. And so, and I think that's, you know, I think maybe. not beef very often because that has, you know, very saturated fats. And I think fats are really important in lipoedema because all membranes are made of fatty acids. And if you have a lot of omega 6 fatty acids, that stiffens up that, uh, fat cell membrane, which isn't good.

So I like people to take in more omega 3 fatty acids. And I, uh, like to run an essential fatty acid profile to take a look at kind of where people are. Not great, but, um, at least it's something.

Dr. Linda Bluestein: Can you elaborate on, when you were talking about the Omega 6, a lot of people are probably familiar with Omega 3 and they know what some of those sources are, but could you maybe give us some examples of where you would find a lot of the Omega 6 versus Omega [00:23:00] 3?

Dr. Karen Herbst: Oh, that's a good question. Um, uh, vegetable oils that are like, um, not olive oil or not coconut oil. So I would say that would, that would be the main sources of soy oils, which is my goodness, it's in everything. And, and other, um, other vegetable oils would be a, a big source of Omega 6s. And I'm sure somebody out there is saying other things, but right now off the top of my head, I can't think, but this is, let me say this is cause this is really cool.

Um, I was at the, uh, International Lipoedema Conference in Potsdam, Germany in October, and there was a investigator from Italy, Saverio Cinti, and he was, he did electron microscopy on lipoedema fat cells. And what he, he noticed was There's, I'd say, three very important things. One, that there were a lot of large adipocytes in the tissue.[00:24:00]

And large adipocytes are known to be present in conditions such as obesity and diabetes. And often those large adipocytes become sick, hypoxic, and then they, they die off and then macrophages come in and they eat them and they form a circle around them and it looks like a crown. And so we call that a crown like structure.

of macrophages, but you don't see that in lipoedema. And what he found was that these, the fat cells were, were big and they were fine. They had a coating of perilypin on the inside and perilypin, if you have perilypin, that means that you are a, you know, a You're a, an alive fat cell, a fat cell that is alive and doing well.

So why do the fat cells and lipoedema become really large, but they don't die off like the fat cells in diabetes and lipoedema. So that's one thing to think about. And it may have something to do with, you know, that it's a different kind of fat cell. Or it may have something to do with the lipid composition of the fat [00:25:00] cell.

So that, that would be interesting to look at further. And then he also found that a lot of the blood vessels, especially the endothelial cells were dying and just, he said in his 45 years of doing electron microscopy, he has never in his life seen anything like it. So pieces of these, micro vessels were just dying off.

And also he found the third thing is he found a lot of calcification in the tissue and including around every fat cell. So this is a, so lipoedema tissue not only is Um, fibrotic, but it's also calcified, so no wonder it's does, it's not very metabolically available to, to undergo lipolysis or to release its fat tissue.

And I, we don't know where the calcium comes from. Um, he's trying to get the paper published and so we'll, we'll know more about what he has to say there, but, um, it, [00:26:00] I find that to be. A link between what we're talking about, the omega 6s and omega 3s and those fat cells. So I don't know what it is, but, but I'm nerding out on it.

I find it very fascinating.

Dr. Linda Bluestein: Yeah, no, for sure. And, um, I would want to come back to, when you were talking about intermittent fasting, are you talking about time restricted eating or are you talking about like actually going days without eating? Can you elaborate on what people are actually finding success with?

And if there's Particular aspects of that that are most important.

Dr. Karen Herbst: So, um, what I see in terms of fasting and women who are successful at it, um, who have lipoedema is that, um, either it's a time restricted, so they're not eating till like 10 in the morning or, or noon, but also some of them go on three day fasts and they find that they don't, when they don't feel good, they kind of feel like they're in a flare.

They will do a three day fast. And as they go [00:27:00] through the three day fast, they feel better and better and better. And then they go back to their eating plan. And often they combine that with time restricted eating as well.

Dr. Linda Bluestein: Now when they're doing that three day fast, they're drinking water, I'm sure, um, what if anything is being consumed besides plain water?

Dr. Karen Herbst: Some of them, uh, uh, drink bone broth, um, herbal teas, usually like clear, clear liquids basically, but no, they're, they, they primarily focus on, on water and, um, you know, non, non sugared electrolyte mixes. That's like a three

Dr. Linda Bluestein: day colonoscopy prep, I think.

Dr. Karen Herbst: Yeah. Yeah, pretty much so. But you know, it really makes you wonder why they have to do that.

You know, what is, what is, what is it that they, um, don't, they have like a low or a higher threshold for a signal that happens [00:28:00] without lipidemia over, you know, overnight. So overnight we fast. And maybe we turn on a signal, but they're not turning it on. It takes them three days to turn it on. And, and often they're, um, they don't go into ketosis very quickly either.

It can take like 40, 48 hours. To go into ketosis. So that, that third day seems to be relatively important and it's not something I'm recommending for everybody. Sure. And it's, it's, it's, there's not a lot of, uh, not a lot that do it, but, um, The ones that do it seem to be very successful and they're able to keep their weight down.

So it's a very anti inflammatory state that they're putting themselves into. So they must have inflammation going on and when their inflammation levels rise too high and they can really feel it, that's when they They do the fast and get that inflammation back down. It would be nice to know why their inflammation is going up.

So I wanted to ask about the

Dr. Linda Bluestein: [00:29:00] intermittent fasting. When people do this, so they do it for like three days when they're kind of feeling like they're more in a flare. And I definitely can relate to that with my own patients. How durable are those effects? After they do that, like how long are they feeling some relief for?

Dr. Karen Herbst: That again, varies. Um, some. The very rare one will repeat it. Um, sometimes weekly that, that would be a rare one. I would say a monthly three day fast would be more common and others might do it. Um, fewer times per year and really only, you know, they, they look for that flare signal, um, The ones that do it more often just know that they're going to flare.

So they just kind of do it on a regular basis. So it it's, there's no, there's no, it's, it has to be personalized per, per person. And I, it would love, I would love to do a fasting study on women with lipidemia because it's, uh, You know, it's a, it's a, it's a great way, [00:30:00] it's a cheap way to do it. There, there really are very few side effects and.

I think what we're trying to do is give a signal to the fat cells that they don't need to be around anymore. And I'm not sure that the lipoedema cells are getting that signal like a regular, I'll call it a regular fat cell would, or a non lipoedema, I don't think there's any normal, but. a non lipoedema fat cell would, would get a signal earlier.

And you know, if you, if, sorry to interrupt. If you change, if you change the fatty acids in the membrane, you also change the, um, ability of the receptors to, to, you know, find a, you know, their, their antigen or whatever they bind to because there, there's these, you know, clathrin coated pits that are there and receptors tend to get into these protective little pits and that's good.

But if they're on the. They're not in a protective pit, then they can get cleaved off by inflammatory enzymes. And so [00:31:00] could it be that that calcification that's around these fat cells is secondary to just chronic inflammation around the fat cells that there's cleaved off all these receptors. So those fat cells are sitting there and just taking up fat, but they have no knowledge of what's going on in their, in the environment.

They have no connection to the environment anywhere more. So they're just like happily taking up fat. It's a thought. So they need a bigger signal in order to get them to, to release the fat.

Dr. Linda Bluestein: And not eating for three days would give that, in theory, at the very least, give a big signal. So interesting. And maybe that signal is just a decrease in inflammation.

Sorry. No, no, no. That's okay. I'm excited about all of this because it's so, it's so fascinating and so rarely talked about, or at least. I didn't know a whole lot about it until I started preparing for this interview. It's really, really interesting. And um, in your experience, the women that are doing this on a regular basis, they actually, they're not [00:32:00] feeling terribly hypoglycemic or, you know, I mean, obviously a lot of these people, maybe they are somewhere on the dysautonomia spectrum, so they are needing to take in the, you know, good amounts of fluid and things like that, but otherwise they're feeling okay.

Dr. Karen Herbst: They feel great. As the day goes, days go on, they feel better and better. And I've never done a three day fast. Um, I do do, um, some time eating, but I would be interested in doing one just to see if I feel better and better as the three days go on and You know, maybe somebody else wouldn't feel better. And I would, I would suggest that if you don't feel good doing a longer fast that you don't do it and that you work with a healthcare provider to figure out what's best for you and what's healthy for

Dr. Linda Bluestein: you.

And what about saturated fat limitations? Are there restrictions that you recommend on that? I haven't.

Dr. Karen Herbst: I don't, I try not to restrict because a lot of women with lipoedema have a history of disordered eating. So anytime you bring up [00:33:00] like, okay, I want you not to eat this and you start restricting that, that triggers them and not all of them, but, but some of them.

And so, and what am I, why am I doing that? There's no data whatsoever on why I'm doing that. So I think eating healthy fats. Especially olive oil. I really like olive oil, coconut oil, um, avocados, you know, nuts, the usual healthy fats that people eat and to try and stay away from the more saturated fats that you would find in beef, potato chips and vegetable oils and things like that.

Dr. Linda Bluestein: Okay. Wonderful. We're going to take a quick break and when we come back, we are going to dive more into treatment and we're going to talk specifically about medications and surgery. So we'll be right back.

This episode of the Bendy Bodies podcast is brought to you by EDS Guardians, paying it forward in the Ehlers Danlos Syndrome community, patient to patient for the common good. I am proud to serve on the [00:34:00] inaugural board of directors for EDS Guardians, a small charity with a big mission and a big heart.

Now seeking donors, volunteers, and partners. Patient advocacy and support programs available now. Travel grants launching in 2025. Learn more, shop for a cause at their swag store, and join the revolution at edsguardians. org. Okay, we're back. Um, super excited about this treatment. section because I know a lot of people had so many questions.

We're going to get to medications and surgery in a minute, but I first want to talk about supplements. Are there any supplements that you commonly recommend and what are your favorites? Uh, what should we know about that?

Dr. Karen Herbst: I do have some favorite supplements. Uh, My first, well, because the, because, because there's a microvascular disease, I want to, I tried to think of supplements that are going to target that and decrease the, the inflammation around the vessel.

So we're stopping the leakage of fluid [00:35:00] into that interstitial space because that seems to be overwhelming the lymphatic vessels. And it also seems to be generating an increase in the glycosaminoglycans that then bind up that water and form a gel so that flow through the interstitial space is, is slow and then that everything just compounds.

So um, when I, I see a woman with lipoedema, one of the things I do is I look at her veins and her legs and I just use a thermal camera. Um, cause I'm not a, I'm not a vein specialist and with a thermal camera, I can do it super quick and I can just say, do you have varicose veins or not? So first I look for spider veins.

80 percent of women with lipoedema have spider veins. Then I look for varicose veins. If I see them, I'm going to refer them on to a vascular specialist and just get a better baseline idea of what their veins look like. But I'll also start recommending diazomib. And diazomib comes from the rind of citrus fruit.

So if you're allergic to citrus, you can't, you know, probably not a good idea if you take it. And, but [00:36:00] diazomib is well known to decrease inflammation around the veins. And so I'm, you know, fingers crossed as happening around the microvessels and because it decreases inflammation in general, it improves lymphatic pumping because inflammation in general in the body slows lymphatic pumping, which is why in part people who develop obesity and inflammation along with that have slow lymphatic pumping and are at great risk for obesity related lymphedema.

So I'd say diazoma is kind of my, my go to. Uh, fatigue, interestingly, fatigue and brain fog are, are prevalent in the lipoedema population. And so I, I'm thinking maybe they have some underlying mitochondrial dysfunction. And so I give them, often give them nicotinamide riboside. which we know kind of revives your mitochondria.

And then along with it, I give them a B vitamin unless they have MTHFR mutations, then it's a [00:37:00] methylated B and then also a good CoQ10. And then from there, it's, it's, uh, it's really personalized and, and, you know, things like Berberine. Berberine, um, is, uh, if they have some, uh, looks like they're insulin resistant, they have, um, inflammation, metabolic disease, I often recommend Berberine because of its insulin sensitizing effects.

It's also a baby GLP 1 inhibitor, so it increases GLP 1. And so, um, And then just, you know, I, um, just good stuff for connective tissue, like vitamin C. I like them just to at least to take a little vitamin C. I used to recommend selenium. Um, everyone knows me for selenium, but, um, Usually, um, you know, it's easy to get your selenium levels too high.

So I, I, I try not to give extra unless, you know, if they really want to try it, I measure their blood level. If it's low, then I'm okay with it. Or it's low normal, but I just don't want them to go [00:38:00] over because of the very few studies that have showed that increasing, Selenium levels can increase insulin resistance.

And we did publish on a lot of, I mean, we published on a whole slug of supplements that potentially could be used for lipoedema, but you know, there's really, there's no studies really on it. Um, Alexandre Amato from Brazil did publish a little bit on anti inflammatories and lipoedema and he has some proprietary blends that he uses.

But I think, um, I like people to get it from their food. That's why I'm not, I don't want to over supplement people. I want them to, you know, so that's, that's, you know, I know the keto is really anti inflammatory, so I don't, you're, you're not going to push. You know, carbs on them through vegetables, but I do for the people who are eating, um, more plant based or just like a low carb type of, um, eating plan, I tend to encourage rainbow colored fruits and vegetables to get all those bioflavonoids.

Dr. Linda Bluestein: Yeah. And if they have mast cell activation [00:39:00] syndrome, then of course, you know, you have to take that into consideration as well. Right. So, and, and then the potential for excipients of the supplements. So, um,

Dr. Karen Herbst: Crazy, right? So I, and I, that's what I usually say is, and I, I look for, you know, get the cleanest supplement you can, but all supplements have it.

You could get the powders and put it in your own little capsules if you want to. It's just a lot of work. And yeah, so I used to supplement a lot more and I supplement a lot less now and try to do it through food, exercise, manual type therapies, um, and tools. Women get a lot of tools, muscle massagers that they use, you know, at home.

So you're really manipulating the tissue from the outside, trying to eat helpfully and get, um, anti inflammatories through your food. And then moving just to keep the fluid moving out of the legs using that calf muscle pump.

Dr. Linda Bluestein: Excellent. And a couple of the things that I had read in some of the papers you had written were DHEA and yohimbine.

[00:40:00] Yes.

Dr. Karen Herbst: Yeah. So DHEA, um, you know, as an, as an androgen. So the question is, are androgens good for lipoedema? And there's, um, a number of, um, women that have, um, transition from male to female. And, you know, the question is, I'm in a family with lipoedema, am I going to get lipoedema? Very possible. If you, if, if the right genes are there, and we don't even know what those genes are.

Nobody's found a gene for lipoedema. Nobody's found two or five or 10 genes for lipoedema. So it's probably, it's kind of like hypermobile, Ehlers Danlos. I think the genes are going to start coming out like one by one, but they're really, they, there was a really great family study that came out of, uh, San Diego.

Australia, and they looked at beautiful families and they couldn't find a gene. So it's going to be difficult. Back to the DHEA. So I think men are protected from lipoedema more than women. So is it the androgens that are helpful and could [00:41:00] DHEA be helpful? I'm a endocrinologist and we were trained, do not give DHEA unless they really need it, unless they're really low, because there can be.

Some issues with taking, you know, DHEA, especially if you take too much, it can increase your testosterone levels. But the, the, what, the reason why a woman with lipoedema would take DHEA is it increases lipolysis in fat cells. And so the, the thought is that you're going to get decreased, um, you can decrease some of your fat tissue.

Uh, and I know of a woman who takes DHEA, she has for years, and she has maintained the same stage. But she's a plant based eater and an avid exerciser. And she also has really good, um, mindfulness practice, which I think is really important in lipoedema because of, you know, the years of not knowing what you have and how women get treated [00:42:00] if, you know, they have too much fat tissue on their body.

But I digress. But I, so I think DHE is, is okay. I just, um, I feel like in that case, it would be a good idea to work with a health care provider and get your DHEA level measured and not go too high above normal. And then Yohimbine. Yeah, sorry. Yeah, yeah, yeah. So, Yohimbine, that's, it's so, I'm laughing because I always try these supplements.

So, I tried DHEA for a while just to see like what happens to me. I tried Yohimbine and I was in clinic. And so I would take yohimbine and I'd be wearing my white jacket and then all of a sudden I'd be like, Oh my God, and I would just take it off because I would just go into this massive sweat. And so yohimbine is often used by bodybuilders, as you know.

And the, I think the, you know, going through the literature, the best time to take yohimbine would be right before you exercise. That seems to be where it works the best. I have a really short half life and [00:43:00] it can decrease fat tissue if you take it. Um, it kind of acts synergistically with exercise. So this would be something you would pulse, not something you would take all the time.

And it is activating your sympathetic nervous system. So you have to worry about things like, you know, heart palpitations, especially if you have um, tachycardia, you know, baseline tachycardia with autonomic dysfunction.

Dr. Linda Bluestein: And in people who have fatigue, which I know, uh, sounds like that is a lot of your patients.

It's definitely a lot of my patients as well. Do you find that the DHEA sometimes helps with that?

Dr. Karen Herbst: Yeah, I have noticed that. It does. But not in everybody, and that may reflect maybe a lower level. Some people are starting at a lower level, so they're noticing that increase, whereas others are not. Okay.

Let's move

Dr. Linda Bluestein: on to medications. What medications do you recommend?

Dr. Karen Herbst: So one of my favorite medications is dextroamphetamine, and I actually published a paper on this, and the [00:44:00] reason I did it is because of the literature on Phentermine, and I'm not as big of a fan of Phentermine as I am dextroamphetamine, because Phentermine, tends to have to be used at higher levels and then it's at greater risk for down regulating the adrenergic receptors that it binds to and thereby losing its effectiveness.

So you have to take holidays, whereas dextroamphetamine, you don't, you could use it at much lower levels and they, um, you can get the brand Zenzetti, which has, um, fewer excipient ingredients. So that's the one that I would use in my mast cell patients would be the Zenzetti brand. And I've, what we showed was that over 90 percent of women with lipoedema said that they felt that their lipoedema got better taking dextroamphetamine.

And we're talking, and if you had a medication like that, it would be a blockbuster like the GLP ones, right? So they, they lost weight. They had a lot more energy. They had a lot more focus, they, [00:45:00] they, um, and more motivation than they were more active in their lives. Um, they all, they, there was a very teeny reduction in sleep.

It was almost negligible and nobody abused it either. So, you know, they weren't ordering it ahead of time and taking extra. And I use, um, doses as low as 2. 5 milligrams. I tend to use that for my very sensitive, um, patients with Durkheim's disease, who have mast cell issues. are usually bedridden and a 2. 5 milligram dose can get people out of bed and living their lives again, which is just incredible.

And then five milligrams, um, also common, um, 10 more common and then 20 is probably the most common dose that I use and I don't go higher. I do not like to go higher because when I looked into the literature on what would help edema, That was the highest dose that, oh, 25 milligrams was the highest dose they used, but I just like [00:46:00] 20 because I can give them two 10 milligram tablets a day and we're good.

And that was from the literature on the, um, by Streeton. And they have the, the street and test where they try and figure out whether you're a water excreter or salt excreter. And I, I said, wow, they're using that medication. Let me, let me try that. And it's just been incredible, the, the result with that.

The second medication that I often use, which is not very well known as pentoxifilin, And that is an old drug from the 70s, old cardiac med called Trentol, and it's a great anti inflammatory. I tend to use that more in patients with Durkheim's disease and often more in men who have Durkheim's disease because, um, in Durkheim's disease, again, it's a very painful disease and the way men Men's pain pathway works is that their glial cells and their central nervous system interact with their nerves and the glial cells are like your macrophages or monocytes of your central [00:47:00] nervous system.

Whereas women tend to do, um, have pain that interact, that occurs more through their T cells than their glial cells. And the glial cells respond very well to pentoxifilin for some reason. Haven't. I haven't delved deep into that yet, but I'm planning on it. So, um, but I have used it in women in very low doses.

It does cause headache and GI upset. So unfortunately it's not good for mast cell. People with very sensitive mast cell, forget it, it does not work. Um. Um. I, I use metformin often because especially if there's metabolic disease because metformin decreases fibrosis in the tissue, it's well known to do that.

So is pentoxifilin. And then the elephant in the room is I do use GLP 1 agonists, uh, and those have just like people, it's just been incredible. And sometimes I combine a GLP 1 agonist to keep the dose low with, [00:48:00] uh, a small dose of amphetamine. Um, And that seems to, they just seem to work synergistically.

And just incredible transformations in people's lives with the GLP 1

Dr. Linda Bluestein: agonists. Are you running into problems with insurance with the GLP 1 agonists and or adverse events, adverse effects?

Dr. Karen Herbst: So insurance is becoming, um, harder and harder because, um, If I have someone who does have diabetes, then when we give them the GLP 1 agonist, their hemoglobin A1c comes down, they lose weight, and then the insurance company says they don't have diabetes anymore, so we're going to, you know, withdraw it, which is ridiculous because it's a chronic disease.

So, um, and, and it's, and it's hard to get it approved. Um, it's been a little bit easier to get the ZepBound approved recently because it's newer and there's still coupons, but yes, insurance is a big deal. I, and I wish it, I wish it weren't as hard, but, but I understand [00:49:00] these are expensive medications and, and so many people are, are taking them and the insurance is trying to push back on it.

But, um, side effects, um, a lot of my patients learn to manage their constipation. And some of them have almost no side effects. Um, and some of them don't respond to GLP 1 agonists. Not that many, but I've, I've had a number of them and I didn't believe it. You know, I'm like, well, you only tried the semaglutide.

Let's put you on the terzepatide, put them on the terzepatide and sure enough, they didn't respond. Don't know why that is. I don't know. There might be, maybe there's some mutations in the insulin receptor or the GLP 1 receptor, just don't know. But I, I really, they, they don't complain. They are so happy to have lost the weight and they, they regulate their gut, um, cause they're so motivated.

Have you had a lot of trouble with GLP 1 side effects?

Dr. Linda Bluestein: Well, I, you know, I have a lot of patients that [00:50:00] have gastroparesis and I, I haven't really ventured into that a lot yet. Um, so I was really, I bet it's absolutely on my list of, uh, questions specifically for you and was very curious about, you know, and your, Working with your patients, what you consider to be definite contraindications to the GLP 1s?

Dr. Karen Herbst: So I have, I have a number of patients who have gastroparesis as well. I have started GLP 1s and a few of them and I do low dose. And I, I just, I'm very reluctant to keep increasing them, um, because of their guts. So I want them to get very, very used to a dose before they go up. And then we often alternate, like if they start at like 0.

25, we'll go to 0. 25 alternating with 0. 5, you know, so we're not just jumping up, you know, and getting them to the highest dose possible as fast as we can. I think that's asking for

Dr. Linda Bluestein: trouble. Right, right. And this, this is a great [00:51:00] conversation, a great example of why the seven minute visit is so problematic, right?

This is a lot to try to cover in these short visits that a lot of people are experiencing.

Dr. Karen Herbst: Yeah, I do. Um, I'm cash in a cash based practice because of that. There's, I barely get done in an hour and now I've, um, I've got a new comprehensive appointment where I do an ultrasound at the same time and that, and we were doc, we're quantitating lipoedema using ultrasound parameters from two different publications because we just need a little bit of extra information for insurance companies and just, we need to find a way to really, you know, document.

lipedema quantitatively rather than just qualitatively. And then, um, it's so much fun to look inside people's bodies and show them, you know, like, and I said, where else do you want me to look? Will you look here? Yeah, let's do it. I'm enjoying it.

Dr. Linda Bluestein: Yeah. Oh, that's great. That's great. Yeah. And [00:52:00] with the EDS population, the, you know, the triad EDS, uh, uh, I mean, it's definitely, these are complex interwoven conditions, right?

That are, that are very time consuming to tease out. Definitely want to find out about surgery and are there surgeries that are helpful for this?

Dr. Karen Herbst: Yes. So I, I, I wish. To goodness that we had, um, medications that really can get rid of the lipoedema. Usually the medications are getting rid of the non lipoedema tissue.

And it's just, I think in my opinion, it just takes so long to get rid of that lipoedema tissue because it's so fibrotic. And there may be other reasons like the calcification. Um, but we do know the fibrosis exists and it's, It's like a cage inside of the tissue. So we don't have anything yet and we need long term [00:53:00] studies.

And I looked on clinicaltrials. gov and there's not a single GLP 1 study on lipoedema registered on clinicaltrials. gov. So I don't think that's going to happen anytime soon. Uh, and I don't know if the companies even want to go into it because they, they have enough to do with, um, people who have, um, non lipidema obesity.

But surgery seems to have to be very helpful. And in general, this is a liposuction, and there are different kinds of liposuction. One's called tumescent liposuction, and they use PAL, power assisted liposuction, where the cannula vibrates, and that kind of loosens things up in the tissue a little bit more.

And the, Tumescent fluid that they infuse into the tissue softens everything up so that they can suck it out through the cannulas a little bit easier. And then there's, um, water jet assisted liposuction that just takes jets of water and it shoots it at the fat tissue and knocks it down and then sucks it out.

And then [00:54:00] there's variations on the, um, Tumescent. liposuction. For example, there's, you know, VASER and there's SMART lipo. And, um, but the most common ones are tumescent with PAL or water jet assisted liposuction. And it's been, um, there, it was initially very difficult to get these surgeries covered by insurance companies, but now it seems to be slightly easier.

It's still a very long process and you, and, uh, it's, Insurance companies have developed policies which you have to follow in order to be considered for coverage. Um, but when women do get the liposuction, they often experience a dramatic reduction in pain, a dramatic reduction in heaviness of their legs due to that fluid that accumulates with standing and at the end of the day, they, their easy bruising goes down.

Which is amazing. And they, their activity levels go up and their mood goes up too. You know, they're, [00:55:00] they're just happier. They feel better. They look better. The, the women that have problems with, with surgery are the ones that have inflammation. So if they have metabolic disease. Or something like MCAS that's gone untreated or some other source of inflammation that we may not even know about.

They tend to get worse and they start to grow fat more on the areas of the body that weren't treated. So the abdomen, the shoulders, the back, the breasts, the arms. And that's really unfortunate because they've done so much work to get the surgery and then they just start growing again. And so that's why I'm, I am vigilant about improving metabolic disease before anyone has surgery.

Sometimes, um, you know, that there's, um, other factors that, um, supersede the reduction in metabolic disease and, and women, you know, go [00:56:00] for the surgeries. And then, you know, it's, it's a scramble to work with them, but it would be a good idea at that point to start a GLP 1 agonist just to keep their inflammation down as, as much as possible.

Dr. Linda Bluestein: So before surgery, are there certain things that you're doing in order to assess a person's inflammation?

Dr. Karen Herbst: So usually I run a fasting insulin and glucose, and then I calculate a HOMA. assessment to see if they have insulin resistance. I run a hemoglobin A1c and a CRP level, and that's about it, which probably isn't sufficient, but we don't have good evidence in the literature that we should be running anything else.

Um, but recently we've been checking ACEs questionnaires, which looks at childhood trauma and It seems to be a little bit higher in the lipoedema population, likely because these young girls developed increased fat tissue and felt self conscious and maybe got bullied or made fun of. Um, but, um, what that literature suggests is that [00:57:00] with childhood trauma, That CRP levels are not elevated, but IL 6 and TNF alpha are elevated.

So maybe we should be looking at things like that, but sometimes like insurance doesn't cover those levels. So I'd be asking people to, to get those levels. And then where's my data? How do I tell the insurance company that, you know, they need to have these tests done? So unless they self pay, it's, uh, it's.

It's not as easy as I would like it to be.

Dr. Linda Bluestein: Mm hmm. And if somebody is contemplating a different surgery that's in the same region, so for example, total knee replacement, um, and they have lipedema, would you think that they would be at increased risk of complications?

Dr. Karen Herbst: That is, that's a very interesting question and we just had a research webinar on that.

Um, a lot of women, um, have gotten turned down for knee surgery because they have too much fat tissue around their knees. So they're walking around bone on bone, unable to get surgery. So in that [00:58:00] case, with that particular surgeon, it would be a good idea to get liposuction around the knee. Remove as much fat tissue as possible to allow that surgeon better access to the knee.

Um, there's also weight issues, so you know, you also have to look at, um, you know, optimizing nutrition and exercise and maybe, um, weight loss. medications like GLP 1s or, um, others. And then there's some women who they have surgeons that just go ahead and replace the knee and they really haven't had any problems.

So, um, I think it's, it's, it's, it's very dependent on the surgeon. Um, I do think it is harder to get into the knee if, if there's a lot of fat tissue around it. And I would personally advocate for some, focused liposuction to, to allow the surgeon better access. But I don't think there's any complications beyond that unless there's, um, a huge increase in weight, which, you know, the [00:59:00] surgeons don't like

Dr. Linda Bluestein: with knee replacements.

Yeah. Then they worry about infection risk and a lot of other, uh, things for sure. So DVTs and PEs and things like that. Yeah. Um, in terms of tools, you've kind of mentioned this already a little bit earlier, but what, are there some tools that can be helpful and, uh, which ones? Yeah. Yeah. Absolutely.

Dr. Karen Herbst: So the muscle massager seemed to be, um, the, the latest, greatest tool and most women have it and they, they say it really helps.

It helps decrease the fibrosis, the, the, the congestion, I'll say the tissue congestion, and that's probably the water bound up to glycosaminoglycans forming a gel in the tissue. And I think it over time, it, it may be helpful with decreasing fibrosis. Vibrosis, but it definitely helps free up movement, which is really good.

Uh, whole body vibration machines are very popular. Uh, I like them myself. Um, they, um, increase blood flow, increase lymph flow, build bone and muscle. And one of the [01:00:00] things that, of course, we worry about with the new GLP 1 agonists or even bariatric surgery or other dramatic weight loss programs is that you're going to lose muscle mass at the same time you're going to lose fat mass.

And we know that muscle eats fat, so we don't want that. And we don't want women to lose strength. I think whole body vibration is a really great tool to maintain your muscle mass and it's so easy to do. Like here in Arizona, it's so hot, you don't want to walk outside, but you can get on your whole body vibration machine.

Um, other tools are rollers. I love a flat roller. And often I give a flat roller to my patients and say, try it out, try it out on your thigh. And they're rolling their thigh and they just keep rolling and rolling and rolling and rolling everything they can find. They're like, Oh my God, this feels so good.

And I think it just helps teach fat tissue that it needs to be smooth. It needs to stay in its place. It needs to go down. It needs to flow better. And I like it better [01:01:00] than, um, I'm not going to say the name of the, of some of the tools that are out there, but you know, the more bumpy ones, I like it better than the bumpy ones that, that if you press it on the tissue, it goes deep immediately.

I like to do it in layers and, and with the flat roller, you can, you can roll gently or you can roll really deep and push hard and everything in between. So you can do it to your own ability to tolerate it. And then I have them put the flat roller behind their knee and bend their knee because that's where it lengths.

Can get really congested and that's where there are lymph nodes. Um, I have them bend it here on their arm. Cause again, that's where lymph nodes are and then under the arm here. And I kind of have them clear everything and then they can just go at it and use that roller. And it's something you can do while you were.

talking on the phone or watching television or sitting outside or, you know, so, so I'd say flat rollers, whole body vibration, muscle massagers. Um, I used to recommend Gua Sha tools and a lot of women still [01:02:00] use Gua Sha tools. So, you know, the flat tools for scraping

Dr. Linda Bluestein: and,

Dr. Karen Herbst: That's

Dr. Linda Bluestein: all I

Dr. Karen Herbst: can

Dr. Linda Bluestein: think of right now.

And when it comes to the vibration plates, um, are there certain things that you're recommending that people do on the vibration plate? Because I've seen like a whole host of, uh, exercise protocols that you can do. And of course, I'm sure you have this too, where patients can be very limited in what they're able to do because of joint pain and chronic fatigue and things like that.

So is there something in particular that's most important when you're looking at the usage of a vibration plate?

Dr. Karen Herbst: So I, I want them to use it however they feel comfortable. Um, if they are still working and they come home and they're just exhausted, if they can sit down and just put their feet up on the whole body vibration machine and vibrate their calves, because the calves are the place.

where fluid tends to accumulate most because when you stand, that's where the highest pressure is in your venous system. So if they can just vibrate their calves, [01:03:00] I'm really happy. I actually have a very small trampoline under my desk even right now, and I can bounce my feet up and down, which, you know, anybody can do at work or when you get home.

Um, I have them sit on the whole body vibration machine. If they feel comfortable, I don't want them to get have, um, get any damage to their spine, but a lot of them at, at low frequency, feel really comfortable on the, on the machine sitting and then standing. Um, I like you to move around because you can actually move where the vibration extends to on the body.

So if you just bend your. knees, it will stay in your calves. If you straighten your legs, it'll go up to your abdomen. If you straighten your legs and lean back, it'll go even further up onto your chest and even onto your head. And then lastly, if, if they're just, you know, if they want, they could just put their arms on the machine, sit next to it and just put their arms on it and get some whole body vibration of their arms.

So whatever they feel comfortable doing, and then when you're standing on it, you could do squats, you could pull on rubber bands, you could just do [01:04:00] all sorts of things if, if you want to elevate the experience.

Dr. Linda Bluestein: Okay, last question before we get into the hypermobility hack and I could, I could probably ask you, uh, you know, hours and hours more, but, uh, I want to respect your time.

Um, what about mast cells and hormones and are there certain ways in which they impact a lipoedema that we should be aware of? Yes.

Dr. Karen Herbst: Yes. So. There are some data in the literature suggesting that estrogens can make, um, lipedema worse, especially through inflammation. And one of the pathways I think that estrogen does this is through mast cells, so estrogen can directly activate mast cells and turn them on.

So if a woman has, Um, is estrogen dominant for, for whatever reason. And that could be just, she has excess fat tissue because fat cells, um, generate aromatase. Aromatase changes androgens into estrogen. So almost by definition, many women who have. Excess [01:05:00] fat on their body could be ES estrogen dominant. And then e estrogen.

Estrogen also potentiates the immunoglobin e activation of mast cells. So it's activating mast cells through two different pathways. So the, the question always comes up if I, um, have lipedema, can I go on the birth control pill, or if I have lipedema, can I go on hormone replacement therapy? And we don't have the answer to that.

But I can give you anecdotally what I have seen over the years, and that is that women who start hormones of any kind, sorry about that, women who start hormones of any kind tend to gain a little bit of weight, and then they stabilize, and they're fine. And then when they go off the They gain a little bit of weight and then they stabilize.

So, so if you can prepare for that, you know that you're going to go on to hormones, really be, uh, diligent with what food you're eating, be diligent with your [01:06:00] movement, um, uh, mindfulness, you know, just keep the stress down because we all have it and then, and then go on to the hormones. And when you come off, Repeat that same pattern.

I think it's okay. So I have given my blessing for many women to go on the birth control pill. I like the ones that are a steady dose. I don't like the ones that fluctuate because that really pulses the mast cells and perhaps other immune cells. And then hormone replacement therapy. I found it very interesting in my training as an endocrinologist that when we gave men testosterone we watched them diligently and made sure they didn't go too high and we're very careful with them.

And with women we gave them hormones and said there you go and sent them on their way. Now there are um, bioidentical hormone specialists who do watch their patients very carefully and I'm sure there's some. Um, allopathic physicians that also watch their patients very carefully and which is really great and I applaud that.

But what I usually say is keep your [01:07:00] estrogen in the low normal range. Don't go crazy. Don't be at the high range or, or above normal. Make sure that you're, you balance estrogen with progesterone to protect the uterine lining and then monitor your testosterone levels as well because if you have super low testosterone, then that testosterone estrogen ratio is off.

So keep testosterone within the normal range as well. Don't over replace that either.

Dr. Linda Bluestein: That's fabulous information. Thank you so much for sharing all of that. That's really great. Um, I like to end every episode with a hypermobility hack and I'm sure you have one that you can share with us.

Dr. Karen Herbst: So I guess, um, I'm a big fan of compression garments and I like how it shapes the body and give support.

And I don't know if you know this, but I have hypermobile EDS, and I wear compression. I did not know that. Yes, I do. And the funny thing, I was diagnosed in 2016, and I was going through the [01:08:00] bite and criteria for all of my patients. And I would do everything, and say, this is how you do this, this is how you do that.

And, but I wasn't, you know, Thinking that I have hypermobility and I'm not sure. I mean, I, I have heads, but I don't know why I have it. You know, it could be due to inflammation or something else. I know I don't have the Calicrion mutation. Um, and nor do that. I have the MTHFR mutation. So I obviously have something else cause I've already looked at my genes and, and, and I think that, and one of the things that I did early on is I have, And I've looked through the, um, the hyper mobile literature about fat and there's not a lot.

And, you know, you say the trifecta and I think it should be, I think you should add lipoedema in there because it's, it's just so common that there's, there's some abnormalities of fat tissue. And in men, what I noticed is they get big amount of, um, flank fat and they often have it. Stria on their low back.

That's my, [01:09:00] that's men, big flanks, big flank fat, stria on the low back. Ah, there's your fat. In women, um, who have hypermobility, who aren't showing a lot of lipoedema signs, it's on the abdomen. So it's some abnormal tissue on the abdomen, and that's often found in vascular EDS. And then, Just a little bit of increased fat on the calves, not a lot, not a lot that you can see, but when you pinch it up, you can get a kind of a glob of it.

And that would be the type 3. five. So the location, we have different stages for lipidema. We have different types and the type five is very rare and you only see it on the calves. So I think that that compression becomes very important in that case. So you want to compress the calves for sure. And an abdominal compression or anywhere that there's, um, increase or abnormal fat tissue, especially cell, you know, what looks just like cellulite.

Um, I think that needs to be compressed as well because. That's inflammation. [01:10:00] There's inflammation in that tissue. And it gives good, it reduces pain, it improves um, fluid flux, it whisks out inflammatory mediators, um, shapes the body really nicely. And I think it's just really supportive, especially as we age.

Dr. Linda Bluestein: Okay. Well, I love that. Thank you so much, Dr. Herbst, for joining me today. This was such a fantastic conversation and I know that the listeners are going to really just find this incredibly helpful. Um, before you go, can you let me know, uh, if you have any certain projects that you're, uh, you're working involved in right now that you want us to be aware of and also where we can find you?

Dr. Karen Herbst: Sure. Um, so I have just, uh, switched practices. So I am brand new with the Roxbury Institute and the home base is in Beverly Hills, but I am located in Tucson, Arizona. Um, I am working on a number of papers trying to get them all written up and, and out in the literature. But we are planning a study on cavitation for [01:11:00] lipoedema with Karen Ashforth starting in January 2025.

And cavitation is basically sound waves that go through the tissue and loosen everything up. So that might be another great tool for women to use. And then, um, I am heavily into the genetics and my goal is not to do large, uh, population based genetic studies or, or even family studies right now, what I'm using genetics for.

is to improve the health of people. And so we're looking for, um, things like deficiencies or, um, obvious, uh, changes in the inflammatory milieu that we can do something about. And I am, I'm so excited to do that. And a lot of my patients, when I tell them about are just jumping on board because they're excited too, because we, uh, we use a direct to consumer company.

So we are empowering, uh, women with lipoedema. to, to go through their own genomes and, um, improve their quality of lives. And we are, um, their cheering [01:12:00] section.

Dr. Linda Bluestein: That's incredible.

Dr. Karen Herbst: Um,

Dr. Linda Bluestein: are you able to share what company you're using for that? Um, I, I'm using sequencing. com. Okay. I'm definitely very familiar with them.

A lot of patients have found them and are using them as well.

Dr. Karen Herbst: Yeah, they do have some issues. They're not perfect. And we are actually actively working with them. I'm working with Denise Morrow. She's a patient of mine. She should be a PhD. She's one of the most incredible people I've ever met. And she works, she's been working on her genetics for two years and she's having these patients.

breakthroughs. And in fact, I'm going to get on with her again this afternoon. I was on with her this morning and she's showing me all her breakthroughs. But, um, but, and once we've, I think once we solve this problem, um, and we're trying to create an Excel spreadsheet that will do that, that will really, um, amplify the experience of people using that.

That platform.

Dr. Linda Bluestein: Incredible. Well, thank you so much again. It was so great to chat with you today. [01:13:00] You too. Thank you for the invitation.

Wow. That was such a fantastic conversation with Dr. Herbst. I feel like Lipedema is such a rarely talked about subject and affects so many people. So I'm sure you enjoyed it. Please share this conversation with your friends, with your family and anyone else that you think might be interested. And thank you again so much for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast.

You can really help us spread the word about joint hypermobility. Lipedema, Ehlers Danlos syndromes, mass cell activation syndrome, and all of these interconnected conditions by sharing the podcast. This really helps raise awareness about these complex conditions. You can find me, Dr. Linda Blustein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn at hypermobilitymd.

You can work with me one on one by visiting hypermobilitymd. com and exploring our [01:14:00] services. You can find human content, my producing team, at human content pods on TikTok and Instagram. You can also find full video episodes up every week on YouTube at Vendee Bodies podcast. To learn more about the Vendee Bodies program disclaimer and ethics policy, submission, verification, and licensing terms, and HIPAA release terms, or to reach out with any questions, please visit bendybodiespodcast.

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