Why Sjogren’s is Often Misdiagnosed with Dr. Kara Wada (Ep 134)

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Dr. Kara Wada: [00:00:00] Jumped right into the AIP diet, um, after I got really sick, um, about six months after my diagnosis and, um, I felt great initially, um, until I didn't until everything in my brain was consumed with thinking about what I was going to eat. Um, was it the right thing? Was I getting enough of the right things?

Was I avoiding the right things? And we went to travel as a family and it was really hard. To not be hungry all the time,

Dr. Linda Bluestein: every bendy body to the bendy bodies podcast with your host and founder, Dr. Linda Blustein, the hypermobility MD. Today we'll be chatting with Dr. Kara Wada, who is an allergy and [00:01:00] immunology doctor. We are going to be talking about Sjogren's and other autoimmune conditions. These so commonly affect people with connective tissue disorders, dysautonomia, and mass cell activation syndrome.

I am really excited about this conversation today because I get so many questions about Sjogren's and other autoimmune conditions. 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.

Here we go!

Okay, so excited to be here with Dr. Karawada today. It's so great to see you again. 

Dr. Kara Wada: Thanks so much for having me back on, Linda. 

Dr. Linda Bluestein: It's always a joy. I got such great feedback from our previous interview and so I wanted to have you back on so we could talk about some other topics because I know you are such a great teacher.

And I know you're so passionate about some things like Sjogren's that are really important for the population of people that listen to this podcast. [00:02:00] And apparently there are millions, like 4 million Americans that are affected by Sjogren's and it affects A half to 1 percent of the population is what I'm reading, and 15 percent or so of women.

So can you start out by telling us, you know, what is Sjogren's and why it matters for this population? 

Dr. Kara Wada: Yeah, what is absolutely astounding to me, you know, of that 4 million people that we Suspect have shogren's and kind of know from the data that have shogren's three quarters of those people don't have that diagnosis.

Yet. 

Dr. Linda Bluestein: There's a 

Dr. Kara Wada: huge gap in disparity. And part of it is because what we learned in medical school and in our training is just a very small. Little sample of what the lived experience of someone with Sjogren's is, and I think what has been incredibly humbling for me is I went through all my education and board certified in immune system medicine of all things, and [00:03:00] I look back.

So I was diagnosed with Sjogren's coming up on about 6 years ago. But I look back knowing what I know now from primarily the patient community, and I had symptoms back in college that were suggestive. Now, you know, who knows what my workup would have been then. Um, but essentially, Sjogren's disease, formerly known as Sjogren's syndrome, is a systemic autoimmune condition.

That tends to be characterized, especially medical education, um, by dryness. It is one of the key features that tends to affect most people with Sjogren's, but not all, and not all people. You know, in the early stages of their condition, it's a disease that can affect folks from head to toe, and it can affect anyone at any age.

Um, though, you know, if you look at the data, it does affect, um. Primarily [00:04:00] women, so about 9 out of 10 patients are. Our women, um, and huge gap and delays in, in diagnosis, um, in part because it's not necessarily an easy diagnosis to make. And I'm sure we'll dig into more about that. 

Dr. Linda Bluestein: Yeah. Yeah. So, in terms of the population with EDS.

POTS, Mast Cell Activation Syndrome, Hypermobility Spectrum Disorders. This is a particularly important topic, right? Because we see more autoimmune conditions associated with those things. And then isn't it also true that an autoimmune disorder can predispose you towards an autonomic nervous system disorder like POTS?

So they're like intertwined like, like this. Yeah. Um, 

Dr. Kara Wada: I'm looking off to the side of my, my daughter. My 9 year old has been wanting to learn how to crochet for years, and I see this ball of yarn in my blanket, and it's all tangled, and that is how I think of [00:05:00] increasingly all of these different connective tissue, immune system, um, and nervous system related disorders.

Um, it, it, You try to pull one of the threads and other parts get more tangled. They're hard to really fully parse out. In part, because if we think about where all of this complex physiology is occurring, and specifically Sjogren's, Sjogren's tends to affect our barriers. Causes our barriers to be drier and more sensitive.

Um, and, um, it also tends to affect our nervous system. And so we think of our, our barriers are our skin, our gut, and our respiratory tract. And those are all comprised of our connective tissues. We have our immune system located there. Often are we think of our mast cells as the border guards, but they are working part and parcel with our [00:06:00] somatosensory nervous system, and they are in constant communication.

So, the way I've kind of started explaining to patients about it is, you know, if you have. Connective tissues that at their base are, you know, you're genetically predisposed to having, um, connective tissues that didn't read the textbook, um, off the bat, then that may set you up for a more glitchy immune system.

If you have defective barriers or a glitchy immune system, you know, we think that that may influence then, um, impacts on our nervous system. And, you know, Add in that third of if you have nervous system issues that that then may impact your connective tissue and your immune system. So we think that this is all not just a two way street, but a, you know, a really confusing roundabout that we're dealing with and in trying to understand.

And I think the other part that makes it really hard. Is [00:07:00] as a medical community, your neurologists are in one building, your allergists are in another building, rheumatologists in yet another pain medicine and physical medicine that we're all so disjointed that it's really, um, difficult for those of us with symptoms that are affecting us from head to toe to get care that looks at all of us and puts all of these puzzle pieces together.

Dr. Linda Bluestein: Yeah, so well said. I think that is one of the really, really challenging things and people ask me all the time. Well, what kind of doctor should I see? Um, you know, if they can't come and see me or come and see you, but they want to know, like, you know, I need to find somebody local to me. And it's like, well, you probably need multiple doctors actually, unfortunately, because, um, you know, like you said, these are head to toe conditions.

So, so Sjogren's disease. Okay, I guess two questions. One is how does a syndrome Um, change to become a disease and two, [00:08:00] is it an autoimmune disorder, a connective tissue disorder or both? 

Dr. Kara Wada: Um, so the second question is the easier to answer that it is both. It is an autoimmune disease and affects the connective tissue.

Dr. Linda Bluestein: Okay. 

Dr. Kara Wada: How did the nomenclature change? Well, within the last year to 18 months, all the parties involved, um, got together, um, over in Europe for a big meeting on Sjogren's. Um, and there has been increased advocacy within the patient community, um, and, you know, those of us affected by this disease, um, to really, um, discuss kind of this.

I like in children's, um, within kind of the education and kind of, it's been kind of the black sheep of the autoimmune conditions. It's 1 of the most common autoimmune conditions. And yet, if you look at, um, the. Docket for the big rheumatology meeting and, um, research funding and, you know, all these other [00:09:00] measures that look at, you know, how, how much we're investigating and the resources we're putting into understanding this condition.

It's been paltry. And so, um, there has been this big push to solidify that to, um, provide some additional, like, this is a disease. It affects people's quality of life. I remember. A colleague who's near and dear to me, who's my former rheumatologist and really only former because of some career changes and and and insurance changes.

But when I was 1st diagnosed, you know, she was trying to reassure me and I can give her the benefit of the doubt. But she said something along the lines of well. You know, if you have to have an autoimmune condition, it's the best one to maybe have. And I mean, frankly, I would say that's BS. Um, if you look at quality of life measures and you look at the hard data, um, it's not true.

Dr. Linda Bluestein: Yeah, that's really interesting. And a [00:10:00] syndrome is generally considered like, you know, kind of things that go together, right. And a disease more so that we actually have a test that we can test for. And, and so that's, that is an important distinction. And I see where That can be so important as the patient to, to have that labeled as a disease and not as a syndrome.

So it's like, take us seriously, darn it. Right, right, right. No, that totally makes sense. And so besides the dryness, so it, and it could be dry eyes, right? Dry mouth, dry skin, um, dryness, 

Dr. Kara Wada: okay. 

Dr. Linda Bluestein: Vaginal dryness. Um, and, uh, maybe the nose, like you said, kind of all these different, uh, places that where we contact with the environment.

Um, what are some of the other symptoms that people might experience? 

Dr. Kara Wada: Yeah, so it's the number one autoimmune cause of dysautonomia. So things like pots, um, and it frequently, um, affects Gastrointestinal function. So often [00:11:00] you'll hear that patients have some sort of GI complaint, whether it is, um, difficulties with irritable bowel type symptoms, foods that just don't agree with them, food sensitivity type symptoms, um.

Often that dysautonomia may affect motility of the gut. So sometimes there's difficulty with swallowing called dysphagia or gastroparesis where the stomach doesn't empty, um, as it should, um, not uncommon to see things like bacterial overgrowth. So SIBO is kind of a term that I think. Kind of been hearing more and more about in recent, um, and, um, it often goes along with other autoimmune conditions.

So, not uncommon to see it go along with celiac rheumatoid arthritis, lupus. There's been a lot of debate amongst scientists, physicians, patient community on. This concept of primary versus secondary show grins. So if you're [00:12:00] reading, especially a lot of the research papers, they'll, um, you know, note, is it primary or secondary and there's been a lot of pushback that show grins is show grins.

If you have it, you have it. It's not necessarily secondary to your lupus or your RA, um, that it is its own entity and, and has its own set of problems, um, that come along with it. Um, those are the big ones. I tend to see people, so as, as an allergy, immunology doc, I often think about it when I see someone with chronic sinus infections that, Um, you know, we're treating their allergies, or we're using the antihistamines, and they're really dry, you know, drier than you would expect from their, you know, the typical, um, treatments are just not improving as I would expect.

Um, and then often there's a lot of pain, so it's super common for me to see on someone's chart fibromyalgia is a diagnosis. And the body pain, [00:13:00] um, is thought to be related to those small fiber nerves being affected. Um, and then the biggest symptom that I should not have left for last, but really is what patients, I think, along with the pain, find the most bothersome is fatigue.

So fatigue that really plays out many times, like chronic fatigue syndrome, where folks are just really, um, running on very few spoons, um, for a long periods of time. Um, 

Dr. Linda Bluestein: I feel like you just described every single one of my patients, um, and, and myself too, in so many ways. And, you know, I live in Colorado currently where it is really, really dry.

Yeah. And I had a patient the other day who, um, you know, lives at a really, really crazy high altitude. So, uh, that, that I think probably can really confound the diagnostic process. And it's fascinating that you're saying that 75 percent of people are actually. Undiagnosed. So how does the diagnostic process [00:14:00] work and how can we make that better?

Dr. Kara Wada: Yeah, I actually was just doing some reading, um, today, uh, a relatively newer article because, you know, when we think about the diagnostic process, it would be really easy if we had some blood work or an x ray or some sort of imaging just that was the slam dunk. And I have to say, I was incredibly Privileged when it came to my diagnostic workup, once I kind of figured out that something was wrong and pulled my hat out of the sand and got blood work drawn, my labs were blaringly messed up.

And so that made my diagnostic process quite easy. But for somewhere between 30 to 40 percent of folks, their labs can be pretty normal. And if, in some cases, completely normal, um, things that you would check, you typically would check an A. N. A. So an anti nuclear antibody that oftentimes can be positive.

But again, not always. [00:15:00] The lab that is most specific and as part of the, um, you are, which are the European, um, and I don't remember the whole the diagnostic criteria from 2016, um, criteria is S. S. A. or row antibody. Um, and that is positive in 60 to 70 percent of folks. Um, that is also important to know if you are someone who is positive for that antibody, um, and you are someone who is of age or wanting to have, um, have a baby that that can affect, um, the fetus of moms who are, um, who are SSA positive, um, and, um, And then the other parts of the diagnostic criteria really are focused on dryness.

So, um, it is focused on, do your eyes make enough tears? So there is a score you can look at, um, [00:16:00] on, you know, are there markers when they put the fluorescein in your eyes, you know, does it show that you have dry eye? And if they put the little paper in your eye, Does it show that you don't make enough tears, called the Shermer's test.

And then there's also salivary flow testing. So essentially, they have you spit in a tube, and they measure it. I've had that done. Yeah, super fun. Sometimes they'll have you chew on a little film to try to stimulate saliva. Um. And that's typically what's used. There's a scoring system. So you get 3 points for the positive labs.

Um, if your labs aren't positive, often they will suggest a lip biopsy or a minor salivary gland biopsy typically done in an office under just a little bit of local anesthetic. Inside the lip, small little, um, incision. They take a little bit of salivary gland tissue and look at it under the microscope.

And what they're looking for are lymphocytes or white blood cells, um, that are, um, [00:17:00] essentially demonstrating that there's inflammation there and that's scored on a focus score. So if you have a focus score of 1 or greater, that gets you another 3 points. And then if you have those positive eye or um, Salvery flow type testing those each get you 1 point.

So, you have to essentially have a score of 4 or greater to meet those classification criteria. What's hard is often you will have folks who maybe meet some of those criteria, or if you look at the big picture of all those symptoms I described, you know, the fatigue and the pain and an element of dryness or even maybe not dryness, but dysautonomia.

You're like, gosh, that's really, once you, you know, kind of that picture and you can see that picture in its whole, but the last, you know, doesn't hit all those check marks. That's really challenging. And, um, when it comes to the lip biopsy, you would think, oh, gosh, well, that must have a much greater ability to detect.

It's [00:18:00] more invasive. It's tissue. Still, 20 percent of people will have a false negative lip biopsy. And so, um, you know, it, it, there still are gaps and that's why. Um, in part, part of the reason why we're missing some folks, um, the other reason is, I think, is physicians. We were not trained to recognize that show grants is common, um, and that it affects all of us.

It's not just that that board's question that we had to memorize for SSA and dryness. Or if you're a pediatrician that SSA can affect the baby's heart conduction system. Um, those are the board's questions you needed to know. And that's all I knew about Sjogren's up until, um, my own diagnosis. 

Dr. Linda Bluestein: That's so interesting, because you're so much younger than I am, so like, I feel like, I feel like what you learned and what I learned are probably about same, I'm sure.

It's like, it's like, how did that not change in that interim, you know? Um, so that's [00:19:00] really. Because there's no 

Dr. Kara Wada: funding. 

Dr. Linda Bluestein: Yeah, yeah, right, right. That's so, uh, fascinating. And, and I would love to know, If you have enough patients that have had lip biopsies, because I have heard that, you know, Oh, it's not that big of a deal.

But then in talking to a dentist that actually she's the one who had me spit into the tube and really strongly suspects that I have it. I haven't gone through the rest of the process for it, but loving this conversation already. Cause I'm going to pick up a lot of tips for my, for my own care. But, um, she said that it's not uncommon for people to have persistent pain after having the biopsy and things like that.

So. You know, that's also made me think this is not something to be undertaken lightly, especially by people like me who already have pain on a regular basis because we're at higher risk of having other pain problems. 

Dr. Kara Wada: Absolutely. I have really taken a case by case convert, you know, conversational approach and shared decision making approach with, with each and every patient and saying, Hey, [00:20:00] here are the tools in our toolbox.

And here are some potential decisions we could make together, depending on how strongly we feel about a lip biopsy, another tool that is not Um, it's not universally recognized, but I have found quite helpful is called an early shogren's antibody profile. Um, it's another lab tested, it's a send out to, um, I believe quest, um, but it essentially checks for 3 different anti auto antibodies that, um, are, um, recognized to be elevated in early disease.

Um, they are proteins that create saliva and tears. Um, and, um, it looks for IgA, IgG, and IgM for each of those antibodies. So it's been really interesting to see some of my patients who, their symptoms are relatively new or onset, [00:21:00] seeing some of those panels come back, and it's their IgM, which is the initial autoantibody that the body would produce.

Is the antibody levels that are elevated. So I'm curious to see, you know, not from another individual standpoint, but just overall, like, would that I would anticipate that that would then potentially switch over to, um, but we don't necessarily know the natural course of that. Um, but that has been quite helpful, I think in.

At least steering us to say, Hey, should we think about doing a 6 month trial of medication? Um, and or, you know, with that information, how do you feel now about a lip biopsy? Does that make you want to, you know, for some people, it actually makes them want to pursue it, which. To be honest, kind of surprised me because I would have thought, you know, that would be, you know, enough for some folks, but that was enough to push them towards wanting a true tissue diagnosis.[00:22:00] 

Um, and so I think when we're venturing into areas of medicine that are not as well defined. Um, it is so critically important to have the time to talk through 

Dr. Linda Bluestein: the ifs, 

Dr. Kara Wada: thens, um, like a choose your own adventure story. Right. 

Dr. Linda Bluestein: Yeah, that's so, that's so true. I, I don't know how people manage that have, you know, 10 minute, uh, recurring patient visits and 20 minute new patient visits.

And then of course, that's not, that's the total amount of visit time. That's not the time spent with the doctor. So it's, it's really. It's crazy how you can even accomplish much of anything in the standard, you know, Western medicine that we are familiar with in the, in the U. S. And you mentioned treatments.

So I would love to know what treatment options exist for Sjogren's. 

Dr. Kara Wada: Yeah, so right now there are zero FDA approved treatments for Sjogren's disease, um, which is really, it's really sad when we look [00:23:00] at the progress that has been made in so many similar conditions, when you see all of the commercials for the new treatments for rheumatoid arthritis and lupus, like, um, it sometimes does make you a little jealous, right?

That like, oh, gosh, um, yeah. Often what will be tried first, first line therapy is hydroxychloroquine or plaquenil. It initially as a medication was used as an anti malarial drug and it tends to be immune modulating rather than immunosuppressive. So one really great. Thing about that particular drug is it does not make you more susceptible for infection, which is generally a good thing.

It's not perfect drug, but it is thought to, um, we think slow progression and does seem to move the dial, especially on the fatigue. Which can be so so challenging. Um, it's generally pretty well tolerated to [00:24:00] occasionally people will have some hiccups where initially starting it. They may have some headaches or some tummy upset tends to get better.

I've had a few patients who've had rashes that we've tried to work through and 1 patient. It was actually her 3rd or 4th try that. She actually finally tolerated it. 

Dr. Linda Bluestein: Wow. 

Dr. Kara Wada: Um, there are some, some protocols, um, desensitization protocols out there that, um, Dr. Donald Thomas has some great resources on his, um, lupus encyclopedia blog and his book.

Um, because it is, um, often a first line treatment for lupus as well. Um, occasionally, if patients don't tolerate, um, hydroxychloroquine, or maybe it's not helpful, um, methotrexate is also sometimes, um, trialed. Um, that tends to be a first line treatment for rheumatoid arthritis. Um, Sometimes has a little bit bigger, you know, kind of side effect profile.

It is a little more immune [00:25:00] suppressive, but can be quite helpful. And then between those there, there's a few other, you know, kind of minor players, but there's this huge gap in treatment. And one of the things that is really, you know, when I talk about show grins being common, um, in the, these misperceptions and myths about show grins that, you know, that it's rare and that it's localized and it's no big deal, but that actually comes along with a 10 percent lifetime risk of lymphoma and cancer.

You know, that's not a small thing. Um, and so, um, one of the treatments that is used to treat both for autoimmune conditions, but also, um, lymphoma leukemia type malignancies is Rituximab. It is, um, an infusion that essentially delete, um, depletes the B cells, which are the antibody producing cells. Um, and so often if Sjogren's is severe enough, um, and, or [00:26:00] there are, you know, some of these other Um, cancer things that have come out of it.

That's often the next step. So that leaves a lot to be desired. Now, that's all gloom and doom, but there are multiple drugs right now that are in phase three clinical trials, um, and are looking really promising. Um, and so we anticipate that somewhere between now and we're recording this in early 2025 and.

Hopefully sometime 2026, we will start seeing those medications go up for a value or, you know, kind of their final evaluation with the FDA. 

Dr. Linda Bluestein: Okay. And what about something like low dose naltrexone? I prescribe that a lot and I find it, you know, so. often helpful with stabilizing mast cells and with the glial cell activation in the brain.

Yeah. Does that help with Sjogren's? Okay. 

Dr. Kara Wada: So I often, so other tools in my toolbox, so outside of kind of maybe treating the autoimmune kind of side of things, [00:27:00] I often use LDN. Um, low dose naltrexone. I often use, um, Civellamine, um, and some other medications that can increase, um, salivary flow. Um, sometimes, um, this is a newer tool in my toolbox, but I have a couple of patients I've put on parutostigmine, which to me, I learned about it is only for myasthenia gravis, but turns out it actually can be really helpful and.

One of the patients just messaged me back last week, and she's like, Dr. Wada. I have saliva and tears for the first time in years, and I have energy. She's a patient who's had long term lupus, certainly has an element of Sjogren's going on, although she has, um, Unfortunately, she, um, has required Rituximab and so doesn't have antibodies, so her SSA wouldn't be positive, even if we went looking for it.

Um, and so we've been kind of clinically treating her as though that's going on as well. [00:28:00] Um, she's like, it's a game changer. Um, so that, um, that's another tool I think I'll be revisiting a bit more after that glowing report from her. And then other things that I find super helpful, especially with dry eye, and for me personally, fish oil.

Um, and trying to really, you know, I take fish oil supplement, but really trying to get those Omega 3s into my diet, 

Dr. Linda Bluestein: um, 

Dr. Kara Wada: is really helpful. Um, some good data to say that's helpful for dry eye, um, whether it's related to Sjogren's 

Dr. Linda Bluestein: or not. Yeah. I remember the first time I prescribed parotastigmine, otherwise known as Mestinon, for dysautonomia.

And in this case, this person had POTS, postural orthostatic tachycardia syndrome. I was a little nervous because I was like, yeah, like you said, we're not, we're, you know, it's like, oh, okay, well, yeah, sure. We'll try it. This, she was a nurse and she really, really wanted to try it. I was like, okay, let's start low, go slow.

And yes, she also thought that the medication was extremely helpful. [00:29:00] So yeah, it's definitely, whether it's, you know, hypermobile Ehlers Danlos hypermobility spectrum disorder. or Sjogren's or so many other conditions, right? We have to be looking at other similar diseases and extrapolating from those and saying, okay, well, biologically, it makes sense that this might work.

And, or you have these other overlapping conditions for which this is potentially helpful. So yeah. And I love that you're mentioning about the nutrition aspects as well. So besides the fish oil. Whether it's via supplement or in the diet, which is even better, of course, um, are there other dietary things that you recommend 

Dr. Kara Wada: in general?

Um, you know, and this is challenging and it's going to be different for every person because, you know, as I'm going to use broad brush strokes, if you're someone who has gastroparesis. And I'm saying you need to go eat a whole bunch of fruits and veggies. That might not be the best recommendation for you.

In general, though, if we can try to aim for getting a [00:30:00] variety of fiber and color in our diet, that visually tells us that we are getting all of those different vitamins and nutrients that we need. Um, to, to nourish your body. Um, if someone is dealing with a small fiber neuropathy or other kind of, um, dysautonomia, nervous system, um, issues, I tend to recommend, um, really try to get some foods in the diet that are higher in alpha lipoic acid.

Um, so, um, chia seeds is one that's. Good, um, from a fiber standpoint, help a little bit with motility. I call it nature's near lacks, um, but also is rich in alpha lipoic acid. Um, and then, um, in general, we have learned so much that really trying to minimize the amount of ultra processed foods in our diet is really critical.

Um, I'm in the middle of listening to the audio book, um, ultra [00:31:00] processed people, and it has been. So I opening it and it's been a much better listen than I ever anticipated, but just going through all the science things that I've I've been reading and learning over the last few years, but putting it all together.

But this idea that really, our diet has switched so tremendously over the last 70, 80 years. And we're eating a lot of things that are not actually food, um, and that changes how our brains and our bodies and our microbiome are all interacting. Um, many of the emulsifiers that are found in our baked goods and our yogurts and all different things to make the mouth feel.

Really great ice creams. Um, those essentially degrade some of those protective mucus lining and the microbiome in our gut changes that dynamic between, you know, the food we eat, uh, the microbiome and then what our immune [00:32:00] system is seeing in the outside world. Also, we just know that there is increased risk of other inflammatory diseases along with a diet of increased ultra processed foods.

So trying to steer away from those things that come in packages as best we can, um, can be really helpful. And it's not easy because all of that food is made with. The idea of us eating more of it in mind, like they, you know, they're, they're going to keep the recipes that sell the best because that makes the company the most money.

Um, and and I think with a 9 year old, a 6 year old and a 3 year old at home, it's really, I don't know. I think in the next, you know, weeks and months, we'll have to have some really challenging conversations about, you know, where do you draw the line? Because we also are 2 working parents and. Don't [00:33:00] want, you know, our kids to develop funny relationships with food.

Right. Right. 

Dr. Linda Bluestein: Yeah. Yeah. That's so, that's so challenging. Okay, we are going to take a quick break and when we come back, we are going to talk about why it matters where you live when it comes to autoimmune disorders. We'll be right back.

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Okay, we're back with dr wada and this has been such helpful information I would love to know a little bit more I want to Before we get into the location part, I want to know a little bit more about your thoughts because I was recently listening to a podcast on microplastics and I feel like you and I are very similar in this way.

It's like you can really kind of go down the rabbit hole. And I know my, my husband is, my husband is like, Oh my God, what, what is she, what is she worried about now? You know? Um, and so it is, it's really hard. And this. Population of people is so, you know, I mean, we're, I think eating disorders in general are such a huge problem and we're very susceptible and we, if we have problems with abdominal pain or food [00:35:00] intolerances.

Then that makes us even more likely to have food aversions and things and then start to get obsessive about our food. So, you know, do you have any tips for people that are listening to this and thinking that sounds really great, but either from a financial standpoint, a time standpoint, you know, I'm going to need to rely on those processed foods sometimes.

But are there certain particular things that people should look to avoid? 

Dr. Kara Wada: So not all processed food is bad. So frozen vegetables, canned beans, those are processed foods, but those can be really great, easy, and healthy components of our diet. It's really trying to steer away from those things that would be Really hard to recreate in your own kitchen like you think about like, there is no way you're going to be able to create a cheeto from scratch in your kitchen.

Right. Um, in, um, and I think what we've worked on as a family is kind [00:36:00] of coming up with a list of relatively easy, um, recipes that. The kids like, um, that get a variety of veggie, protein, um, healthy carbs, kind of in the mix. And we aim to plan, I try to plan that out for about 80 to 90 percent of what we're going to eat for the week, and that still leaves some room for fun and spontaneity and pizza night or, you know, whatever it may be.

Um, I think, you know. I have a personal story and, you know, I, I went very, um, jumped right into the A. I. P. diet. Um, after I got really sick, um, about 6 months after my diagnosis and, um, I felt great initially. Um, until I didn't, until everything in my brain was consumed with thinking about what I was going to eat.

Um, was it the right thing? Was I getting [00:37:00] enough of the right things? Was I avoiding the right things? And we went to travel as a family, and it was really hard to not be hungry all the time. Um, and so at a certain point, I had to ask for help. And I think that would be my advice, is It can be really, really helpful to have someone who is not you, who is not, you know, a close family member, especially someone who has some professional expertise, ideally a registered dietitian, who can one, look to make sure you are getting all of the, Nutrients and components you need in your diet, um, and that can help you sometimes tease out what might be a side effect from the food and what might just be a side effect of all that's going on, um, and not always villainizing the food.

It's very instinctual for us to associate the food that [00:38:00] we eat with symptoms we develop. That's what kept our ancestors alive. Right, like if you got bad berries, right, you want to go back to that bush, 

Dr. Linda Bluestein: right? 

Dr. Kara Wada: Um, cause that killed, you know, the cousin. And so, um, and there's some science to say too, that if you have an inflammatory response in the gut, that that then can feed back to the brain to say, Hey, food aversion.

Um, so that's again, we're working with, um, folks that are mindful, a dietitian and, or, um, I know there's a great, um, primary care doc that, that I, I have as a mentor and, and colleague, um, uh, another Dr. Cara, um, and, um, and she, she really is very, you know, trauma informed and, and can really work through, um, screening for disordered eating and helping support folks.

Um, through that, because it's not easy at all. 

Dr. Linda Bluestein: [00:39:00] No, definitely not. Not easy. So I really appreciate that. I try to get people to kind of also flip the mindset and think about the abundance and how we need food for all those. important nutrients in order to build the healthiest possible cells in our, in our body.

And that should be the first thing we think of when we think of medicine, is what food are we putting into our body? And, like you said, also having that balance of, okay, well, I'm gonna you know, eat something that's a little less, but maybe it's, it's less healthy, but we also, you know, that balance is important for enjoyment of life and social aspects and things.

So long as it's not, you know, really harming you. Um, cause we can really very easily go too extreme in the, in the other direction and it's really tough. 

Dr. Kara Wada: Yeah. And we know that you're looking at big studies, 30 plus different plants within a week. Is associated with the best health outcomes when it comes to diabetes and heart disease and [00:40:00] hypertension and kidney disease and all these sorts of things.

So variety is the spice of life, but also it's helping feed all of those beneficial microbes in the gut. And I always have to do a little asterisk when I say plants, we're not just talking about. Vegetables and fruits, but it's herbs and spices and legumes and nuts and seeds and, um, whole grains. All of those things fall under that category.

So they add up pretty quickly. 

Dr. Linda Bluestein: Okay. I was going to say, cause when you said 30 and I was thinking, I was thinking of, yeah, I was thinking of fruits and vegetables and I'm like, wow. But 

Dr. Kara Wada: you know, we have a local Mediterranean like, um, restaurant similar to Chipotle. And, um, essentially you can get a bowl. And within that bowl, I've counted, you know, upwards of 20 different plants between the herbs and spices and the different options, um, for, you know, 10 bucks, not bad.

Dr. Linda Bluestein: Yeah, 

Dr. Kara Wada: yeah. It's delicious. 

Dr. Linda Bluestein: Right, right. No, that's great. That's [00:41:00] great. So, let's talk about how where you live impacts Your potential for an autoimmune disorder. I saw that you had talked about this on a podcast episode you had me on your podcast, which I so appreciate and I Interviewed you one other time on this podcast and we will link both of those episodes in the show notes because I definitely want people To check those out But can you tell us what you were?

Diving into in particular about that. 

Dr. Kara Wada: Yeah, so you think about where you grow up Um, where you live, um, it impacts who you interact with, where you buy your groceries, the air you breathe, the water you drink. It is your environment and, um, and often it is influenced by our socioeconomics too. So, um, you know, we look at studies in particular with asthma and those.

Kids that grow up closer to highways are exposed to more diesel exhaust car [00:42:00] exhaust fumes that impacts how their immune system responds to the external environment. We see folks that live close or in really, really close proximity to pesticides, increased risk of certain cancers and autoimmune conditions.

I live in central Ohio, um, and, um, would see a good number of patients, um, who would drive, um, from kind of the state line near the Ohio river. And there have been several. Big industrial spills over the last, um, the last decades, um, and including the big train accident that happened just a year or 2 ago, um, in eastern Ohio.

And, you know, it's interesting it I recall, even in training meeting, you know, an occasional patient here or there, and they're like, yeah, my family's health has never been the same since that spill. Um, and then we go on to, you know, [00:43:00] explain, um, the various conditions that everyone had been diagnosed with.

And it's not all the same things, right? Your body. Um, we each have our genetics. We each have our microbiome. We have other, many other factors that are at play. But for those of us that are more susceptible. Who are the canary in the coal mine, which seems to be the case for, for those of us with connective tissue and hypermobility and autoimmune, um, issues, um, it really can move the dial considerably.

Dr. Linda Bluestein: Yeah, that's really, really fascinating 'cause I think that so often we don't think about those other factors that influence our health and our quality of life. And, and, and speaking of. How we can influence our health and quality of life and of course if you, you know, I'm sure people listening to that are thinking well great because I can't move or you know, whatever that's really challenging, of course.

But I know that you also offer a lot of tips for getting better care, getting listened to, [00:44:00] feeling more empowered, being seen, being heard, because that's something that I think so many people struggle with, you know, with a short appointments. Um, doctors are being asked to do more and more. We're getting stretched thinner and thinner.

There's more regulations, more insurance hoops that we have to jump through, etcetera. So, so what can patients do in order to get better care? 

Dr. Kara Wada: So, you know, I think of things in kind of a three way approach. One is owning your story, you know, thinking about it ahead of time, writing down Your timeline. When did symptoms start?

Um, what made them worse? Um, what's made them better, if anything, um, did you have lab work or imaging, you know, already compiling that together can be really helpful because, you know, I don't this probably, um, you know, shares my when I did training, but I finished up medical school, right? [00:45:00] As we were switching from paper charts to electronic charts and electronic health record was billed to me as like, it was going to be the panacea.

It was going to make. Yeah. Everything better and so much easier to care for patients. I wasn't going to have to sit by the fax machine to get like the records from the other hospitals. It was going to be great. But what we've realized is that each patient like the average patient and I would say we are all above average generates 40, 000 pages worth of data every year.

It's a lot of data. Oh, you know, I'm sure like a cat scans half of that, but. You know, it's a lot and so if you are in that compressed visit time, and your doc is trying to find a lab results in that. You know, the needle in the haystack, it's really helpful if you just say, oh, no, I got it right here. Here you go.

Um, and it's going to cut down on the potential for you to have increased costs from stuff being repeated to, um. It's also important [00:46:00] to take the pressure off and prepare a little bit. So you have all of your, you know, you know your story, but when we go into that, you know, that visit, I would say it's probably pretty rare for someone not to have at least a little element of fight or flight, you know, that stress response.

For me, it wasn't necessary fight or flight. I tend to people please. I fawn all over the place. I'm like, yes, my nice rheumatologist. I've been doing great. But really, the reality is I've been like, really, you know, stiff and, you know, trying to whatever. But so I had to start writing stuff down to be like, Dr.

1. Suri doesn't care, you know, I don't need to please her. I just need to tell her the truth. Um, and that's where having a, um, somebody to go with you and advocate friend or family member can be really helpful to call you out on that too. Um, and, um, and think about ahead of time. What are my. Priorities for this visit, um, [00:47:00] what would make me feel like I got what I needed out of that visit.

I think that can be really helpful to let the doc. Or even the, the medical assistant who's rooming, you know, that up front, and you have to realize that, you know, if you are in a place where you only have 15 minutes with. You're a doc, um, that you may not get all of those answers in 1 visit. You very likely, especially if you're working within the insurance based health care system, you are going to have to go back several times to get through that list of issues.

It's. It's the reality. Um, unfortunately, kind of how insurance reimburses for visits. Um, that's don't have much control over their schedule at all. Um, and, um, and are increasingly being asked to double book or, you know, increase it's I was talking to a colleague who's a cancer doc recently. She sees over 20.

[00:48:00] Patients a day. With, with really serious pancreatic cancer, esophageal cancer. I'm like, how in the world I can't even imagine. Um, and, um, and then the last thing I think that's really important is you have to be, you have to be okay with getting comfortable with being uncomfortable because the system, frankly, is it's a dumpster fire.

None of us are particularly comfortable within it. Um, the system has a strong tendency to inflict harm, even though it doesn't necessarily mean to, um, and it's not set up for our comfort. And so, in order to get the care that you need in the setting that we are now, you just have to, to some degree, accept that fact.

Persist 

Dr. Linda Bluestein: nonetheless. Oh yeah. [00:49:00] And, and advocating can be so hard. I'm, I'm a people pleaser too, so I know exactly what you're talking about, , you know, and, uh, so that makes it really, really challenging. And I've, I've had that happen where patients are sitting in front of you and they're describing something and the spouse is saying, no, no, no.

They're, it's, it's way worse than that . Yeah. Um, so, so it's really hard 'cause I, I think as people pleasers and as people who. Um, you know, often we tend to be more sensitive and so we kind of gaslight ourselves even, you know, we're so used to being gaslit by other people, you know, and, uh, I'm sure you've been gaslit by doctors.

I certainly have. Um, and, uh, so, so then we start doubting ourselves. We start, you know, really not, not treating ourselves with the same kindness that we, that we really should. 

Dr. Kara Wada: Yeah. Um, there was one other thing I was going to mention. One thing that I think can be really helpful too [00:50:00] is, you know, if you are seeing a doc that's seeing 25 patients in a day, having a way to humanize yourself quickly in the visit can be helpful.

So it's not necessarily, I mean, I have back pain, but how could I say that I can't sit on the floor and play with my 3 year old without standing up and feeling like I'm 80 for 5 or 10 minutes afterwards. Like that paints a picture for them, doesn't take very much more time to explain that, but that I think, you know, shows like that's not normal for like a 35 year old person, you know, five years ago, me.

Um, to be experiencing that, um, it's a little harder to brush that off as, you know, tired, out 

Dr. Linda Bluestein: of shape, Dr. Mom. And it gives them a little bit better picture of what activities it is that you want to be able to do and that your expectations are realistic, because that's another thing that I think is so [00:51:00] important is like, I love the humanizing.

I totally agree. And also. In the humanizing, letting them know that, you know, you don't expect to be pain free. But like you said, with the goals, like this is something that would really mean a lot to me. It would mean a lot to me to be able to sit on the floor and play with my three year old. And that's something that, you know, I'm not asking to be able to ski in the Olympics.

Dr. Kara Wada: Yeah. I just want to do some magnet tiles and the marble run. 

Dr. Linda Bluestein: Yeah, yeah, exactly. Exactly. And as you mentioned. At the very beginning of the podcast, oftentimes you need so many different people on your team. So, I feel like, yes, the, the patient, um, even though they really, in some ways, they shouldn't have to be responsible for their story, but you're right, they, they are.

They're that common thread that weaves through all of those visits. And oftentimes we are in different systems. So even though on Epic, there's care everywhere. Somebody like me who has a very small private practice. I don't have [00:52:00] EPIC. EPIC would be. We can't afford EPIC. We can't afford EPIC. It's so expensive.

It is definitely not designed for small practices. It's designed for, you know, massive systems, so So if you have epic and you have care everywhere, then you can access other records more easily, but otherwise it's really challenging. So in terms of building a team and trying to get your team working as well as possible, because then you also get conflicting recommendations, right?

So sometimes you go to one person and then you go to another person. Do you have any suggestions for, you know, harnessing the power of your medical team and assembling your medical team? 

Dr. Kara Wada: Asking for recommendations is huge. Um, especially when it comes to our communities of complex chronic disease patients, um, it.

Over and above asking other folks in the community who they've had good experiences with, I think is really, really important. I also wouldn't rule out [00:53:00] the idea of going outside of the insurance network. If you, especially if you are. Um, running up against multiple roadblocks, um, because, um, you know, it, I understand having a chronic disease is incredibly expensive, but puttering around spending copay after copay after copay after copay, um, also doesn't like that.

That doesn't serve us all the time either. Um. One, um, trying to find folks on your team who are happy in their job who aren't burned out is really helpful because if you have, uh, you know, a doc or other health care professional on your team who, who is, um, who is burned out, morally injured, whatever words we want to use.

Um, it first and foremost in effect their [00:54:00] ability to be as compassionate as they would be. Otherwise, it affects their ability to be curious and to think outside the box. Um, and, um, having been someone who has been in burnout before, like, I'm sure I wasn't practicing the best medicine I can and it's a night and day difference when you are working with someone who is showing up.

As an, you know, is that to work with you as a team, um, and just keep at it because it is, it is often not the 1st, 2nd, 3rd, 4th person that you meet, um, you know, even in each particular specialty, we think about, you know, the, the who on your team, typically for show grins. A rheumatologist tends to be on board, um, not always, not a lot of rheumatologists don't take Sjogren's very seriously, um, frankly, um, [00:55:00] but they, when we think about who takes care of immune systems that are glitching or not, you know, working according to the textbook, that tends to be rheumatologists when it is a connective tissue disorder.

Allergy immunology docs have a little bit of overlap, but not a ton, um, enough where it wasn't on my bingo card to be taking care of a ton of show runs. But here we are, because there's such a need. Um, and, um, and. I just feel really passionately about it. Um, often there may be an E. N. T. If someone is dealing with a lot of sinus issues or swallowing issues, G.

1. might be on board neurologist. There are, um, uh, more than a handful of neurologists across the country that are really great with children's and disautonomia. Um, they do take a long time to get into, um. And, um, I mean, those are kind of the main players, dermatologists, [00:56:00] maybe, um, gynecologists for those that are having, um, some of the other gynecologic symptoms as 

Dr. Linda Bluestein: well.

And it seems like a lot of rheumatologists will run a quick panel of tests. And if they come back negative, I doubt that they're really doing, you know, the. The saliva test or the look really looking to see does this person really have dry eye or you know, is this somebody that does not have the SSA antibody?

But they actually do have Sjogren's. So I'm glad that you mentioned that because I feel like a lot of people with connective tissue disorders, they feel like rheumatologists would be a really good fit for their problems. But, um, I feel like that is often not the best fit. I mean, sometimes it is. Of course.

Sometimes it's a great fit. No, but yeah. 

Dr. Kara Wada: Um. There's a, so I, I, I recently have made a job transition and so there was a particular patient. I was trying to get this work up finished before I concluded my time where I was. [00:57:00] And I still don't know what the final answer will be for this patient. I hope I, I hope I get some closure.

Terrible interstitial lung disease, which can affect upwards of, like, 20 percent of folks with Sjogren's, um, uh, bad, um. Motility issues, weight loss. Very positive elevations in their 3 of their early sugars and a body panels, and I'm still getting a ton of pushback on calling it show brands. That was a very bad dryness on top of it.

All um, and um, it's just, it's really, it's, it's frustrating when you learn more about a condition and you kind of can start knowing it when you see it. Um, with good evidence, right? And folks sometimes are still stuck with some, we call them a thought biases or cognitive biases. Um, 1 being like an [00:58:00] anchor bias.

If you think that something is in and certainly I can have that. Sometimes let's show grins too. Right? And that's why you're always thinking about that whole differential of what could be going on. But when you start ruling out all the other things, And everything's coming together, like maybe we do need to think that it could be this, so.

Dr. Linda Bluestein: And I feel like whether it's Sjogren's or another autoimmune condition or Ehlers Danlos, MCAS, uh, Mast cell activation syndrome, POTS, this is a group of people. that are so vulnerable to charlatans, people out there that are, you know, Oh, I can cure this. I can cure that. And do you have any suggestions for how people can know the difference between, you know, a miracle cure and something that is actually a sustainable science based treatment?

Dr. Kara Wada: It's hard. Um, and I think it's, it's really challenging. And our current, you know, unfortunately, [00:59:00] our current Political environment where everything's so hyper polarized and like, it's just, it's really hard. I think it is helpful to look for transparency. Um, I am a big fan of the saying, uh, sunshine is 1 of the best disinfectants, um, you know, and just following.

The money and just seeing, like, where people's recommendations are coming from. I think that that it doesn't tell the whole story, but I think that that's part of the story and at least needs to be a consideration. Um, I think it's also important to see, you know, what. It's generally the science saying, like, when you go to check, we have these awesome tools now, chat, GPT and all these things like, you know, what are some of these broad brushstrokes that you're hearing?

Are they saying things that are totally counter to that? Um, you know, if you look at all the medical literature, it will say the carnivore [01:00:00] diet is not a great idea, right? It's not the cure all. So generally that would be, you know, like, and not to just point out one thing, but, um, Yeah, those are the big ones.

It's not easy. 

Dr. Linda Bluestein: No, it is not easy. And another thing that I always tell people. Yeah, 

Dr. Kara Wada: I was curious what 

Dr. Linda Bluestein: you tell folks. Yeah, I tell people if you struggle to find the initials after the person's name, to see what their actual training is. That's good. Yeah, then that's a That's a bad sign. So, you know, when I see people, whether it's a patient or a client, I'm seeing them for coaching, um, and they're telling me who else is on their team.

And I often will look it up because I want to know, you know, more specifics and poke around on their website. And oftentimes I cannot figure out at all what kind of training they have. Now they're calling themselves. You know, this, and it's like, wait, I don't see where you have that training. So if I really cannot figure this out after really looking around on their website, that [01:01:00] flag.

Dr. Kara Wada: Yeah. Yeah. Yeah. I mean, I Joe, it's like during the pandemic. Like in the midst of it, everyone and their brother was an immune system expert and I was just like, all right. Yeah. Cool. Cool. 

Dr. Linda Bluestein: Yeah. And I did all that training. Yeah. Yeah. Exactly. Exactly. And speaking of your new job and your, your training and all the amazing things that you've done, you've got a podcast, you've done a TEDx talk, at least one, you have these great blog posts.

Um, you've been featured in so many different media. Yeah. outlets and you know, for, for me or for other people listening, like, what are your secrets to success? How do you think you reach the most number of people the most efficiently? Because of course, like we were just saying, it's with the charlatans, I feel like it's so hard because, you know, they can say really sexy things they can say, because they're untrue and outrageous, right?

Whereas, whereas we're often saying science based things that are. That are a little, 

Dr. Kara Wada: you know, and hatching it, [01:02:00] right? Because each person is so individual. Exactly. And, um, yeah. And you can't stand up there with that. You know, that certainty that you are going to cure everyone because you realize that you are human just as that other person is, you know, across from you and.

You can believe so much and that you can absolutely help them in some way, but Curie, you know, like, and, and so there, I think there is something with that energy. Um, I just try to come across as my authentic me, like, I am who I am. I'm, you know, Midwest mom. Uh, I love a good deal, but I do like nice things too.

I'm, you know, uh, You know, in process to, like, not be a people pleaser and trying to re, you know, rediscover some of that, like, rebellious side of me that I really miss from my 20s that was going to go out and [01:03:00] conquer the world and told the college president that I was going to be the next Nobel Prize winner for, from our college.

Um, that was pretty, um, cheeky. Um, I think the main hub for where folks can follow and find everything is at drcarawada. com. Um, have links to all the blogs there and the podcast. There's, um, the Becoming Immune Confident podcast is on a bit of a hiatus. In part, the partnered, um, and I need to talk with you about this project, um, with a good friend, um, Dr.

Beth Buchan. Um, to launch the lessons we didn't learn in medical school podcast. So sharing those stories that, you know, we did not learn in school, but certainly, um, our experiences on the other side of the exam room have been formed. How we approach care care of our patients care of ourselves. And so that's been a real fun passion project to work on [01:04:00] and getting ready to launch primarily telehealth practice.

So, for the next year or so, and. I dream of opening an in person clinic here in the central Ohio area. There's really not much for those of us with complex chronic conditions, um, but as many contracts are, you have non competes to work with, and so it gives me some time to get my bearings and dream and Figure out financing and all that 

Dr. Linda Bluestein: realities, right?

Right. That sounds like that's going to be a great podcast and it is such an interesting time that we're in because of course, a lot of people don't know this, but medical licenses are state dependent. So there are a lot of things that changed at the very beginning of COVID, but then a lot of things that went back once we were, you know, farther along.

And, uh, you know, it was no longer deemed that people couldn't go to in person appointments and things like that. [01:05:00] So, so yeah, telemedicine is something that, you know, is of course a thing that we can do much more easily now, but at the same time, there's so many hoops we have to jump through and, and things like that.

So it's very 

Dr. Kara Wada: expensive. 

Dr. Linda Bluestein: Yes, it's very 

Dr. Kara Wada: learning. 

Dr. Linda Bluestein: Yeah, everything is so much more expensive. I think sometimes people, they don't understand like what you said earlier, I think it's really important to revisit briefly your friend who's an oncologist who sees 20 patients in a day. And I know plenty of doctors who, you know, their patients aren't that sick, but they're, they're seeing 40 patients in a day.

Yeah. Yeah. Absolutely. And, and dermatologists who, you know, yes, yes, 60 or even 80. So if you think about that, if you think about the math. They're billing that many people's insurance, and that's what's covering their overhead for the day, whereas for you or for me, we are seeing a fraction of that in a day, and it's much more emotionally exhausting work as well.

So [01:06:00] it's, it really is a lot harder. I think a lot of people. don't understand the math of it. And I feel like it's, I feel badly because I would love to be able to, you know, quote unquote, take insurance. Um, but at the same time, the math just doesn't work. You can't keep the lights on. You can't keep your website active.

You can't pay for your electronic medical record system. You can't pay for your receptionist or, you know, your virtual assistant if your practices is virtual. So it's Really important 

Dr. Kara Wada: practice right? My 

Dr. Linda Bluestein: quote for that today. Yep. Yep. Exactly. So there's a reason why in insurance based models, they're seeing that many people in a day, um, you know, and they have the ability to bill insurance and collect from insurance and they have contracts with insurance.

And then those of us that are in. Much, much smaller practices, you know, it's, it's a very different, uh, situation. So as a patient, you know, it is really hard because I know there's a lot of people that would love to come see me. I'm sure there's going to be a lot of people that would love to come see you, but from a [01:07:00] financial standpoint, it's hard to swing, but that's where, you know, listening to the podcast, sharing the podcast that, that I have, the new one that Dr.

Wada has, the Becoming Immune Confident podcast that, that she also has, um, you know, because those are free Allow people to learn, um, a lot of the information that you might get in an, in an appointment. So it's not the same of course, as having a one-on-one visit, but at least you can get a good amount of the education or some of the education.

So you can ask more specific questions. You can ask more informed questions, you can. You know, like we talked about, form your team and that kind of thing. 

Dr. Kara Wada: Yeah. Hey, good friends. And, and the plan is to collaborate with, um, good friend and colleague, Dr. Alyssa Zingman over with Prism in some way. And we both have like, had these kinds of conversations of like, how, you know, and it's a question that's in the front of our mind.

How can we. Increase accessibility, [01:08:00] and I think that, you know, is, is the big question and thing that weighs on us. And, um, as we think about and watch how health care changes and involves in the next 

Dr. Linda Bluestein: few years, too. So, I like to end every episode with a hypermobility hack. Do you have one that you can share with us?

Oh, 

Dr. Kara Wada: well, I mean, this is like a tried and true, but I have my. Compression socks on today. Not only is it keeping me warm, um, but definitely quite helpful. Yeah. I don't have any great, like amazing ones that I can think of. 

Dr. Linda Bluestein: Well, I know you talk a lot about not to put words in your mouth, but no, um, I know you talk a lot about exercise and, and show grins and exercises.

Of course. I literally had someone tell me yesterday that they were told by their physical therapist and this person, by the way, is 22 years old and she was, she said she was told by her physical therapist. Not to exercise because she has EDS. And I was like, what? 

Dr. Kara Wada: Oh, dear Lord. [01:09:00] 

Dr. Linda Bluestein: Yeah. 

Dr. Kara Wada: Um, no, I mean, movement is medicine.

And when we think about show grins, one of the working hypotheses of. Why there is so much fatigue is that it, it boils down to a problem with the mitochondria. So how can we support mitochondria? How can we do things that might stimulate them to increase in number and increase in their capacity? So, through nutrition, through pacing and not overdoing it, we don't want people to crash and burn, but also thinking about the type of exercise we do so things that are going to try to build muscle.

At, you know, within the capacity, you have, um, and, um, zone 2 type, um, cardio. So things that you can still talk and have a conversation, you know, that aren't. The crazy hit workouts necessarily, um, but that you over, you know, slowly, but surely can build that endurance over time. And so that's what I've been working on and it has been a [01:10:00] slow and steady slog, but I will say, um, I've been doing more weightlifting and the last probably three or four months.

And, um, I'm definitely feeling stronger energy, even with the bumps and ups and downs with all the viral crud that's gone around this season, um, is doing pretty well. 

Dr. Linda Bluestein: Oh, that's good. Yeah. Especially when you have little ones at home that you're definitely get a lot more exposure. 

Dr. Kara Wada: And just one other like little thing that we didn't talk about, but I think is important.

So we talked about the meds that are in trial for Sjogren's. If you are someone who has symptoms, especially if you are antibody positive, it's worth going to clinicaltrials. com. Gov and and exploring, um, I'm participating in 1 of the clinical trials. I've been going for visits monthly for the last 7 ish months.

Um, and it's folks that. Participate [01:11:00] in those trials that then allow us to get the information to see if those meds are helpful and, um, and to work towards the approval. And so, if that is something that you're open to, or you, you know, want the opportunity for relief. It's worth having the conversation.

All of the study folks are trained to really go through the pros and cons with a fine tooth comb. Um, and they want you to make sure that you feel totally comfortable with participating before they sign you up. Um, but it is a way to potentially access treatment and care before. You know, because there really isn't anything else out there yet.

Dr. Linda Bluestein: And also to clarify, most, all of those treatments then would be free, right? Yeah. And sometimes you even get paid a small amount for going to, yeah. Yeah, I 

Dr. Kara Wada: get about 50 bucks a visit, which It covers gas. I mean, right. Kind of. I just got it. I can plug [01:12:00] in, but yeah, but there's the electric bill. 

Dr. Linda Bluestein: Yeah. But that's really important for people who are really, you know, 

Dr. Kara Wada: yeah, 

Dr. Linda Bluestein: paying attention every day.

Yeah. Yeah. Yeah. That's a, that's an excellent point about going to clinical trials. gov because for whatever condition you have, uh, it's very. It's possible that there is something in the works and that you can get some care that you wouldn't otherwise have access to for financial reasons. So, 

Dr. Kara Wada: that's a 

Dr. Linda Bluestein: great suggestion.

Dr. Kara Wada: Um, one question to ask with that too, which was top of my mind, there's always a chance you get placebo, which is the non medicine, right? But oftentimes, and this is the case in the trial I'm participating in, even if I were getting placebo at the end of that 1 year, I get what's called open label access.

So everyone at the end gets access to the drug. Before it's approved. So, um, in my mind, as I was kind of waiting through all those pros and [01:13:00] cons to me, that made it worth it. But everyone's decision making and thoughts are going to be different. So, 

Dr. Linda Bluestein: yeah, I'm glad you pointed that out because that's such an important component of any trial, right?

You have to compare against a placebo to see. Is the effect of the drug real or not? So that's a very, very important thing that you mentioned. So thank you for, for adding that. So, well, Dr. Watt, it was so great to chat with you again. Thank you so much for taking the time to talk to me. 

Dr. Kara Wada: I so appreciate the conversation and the ability to, to connect with everyone and.

Ah, thank you so much.

Dr. Linda Bluestein: I am so happy I got to chat with Dr. Wada again today. Autoimmunity affects so many people with symptomatic joint hypermobility, and she did such a great job of explaining to us the connections between connective tissue, the immune system, the gastrointestinal system. It's all connected, right? So it's such an important [01:14:00] conversation to have.

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