Are EDS Treatments Moving Faster Than the Evidence? with Dr. Dacre Knight

[00:30] Dr. Linda Bluestein: We need to make sure that we're paying attention to the red flags, which are things like a clinic that recommends the same infusion to everyone. They don't review labs or medications first. So Morgan, you're right on track there.
[00:56] Welcome back to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD — a Mayo Clinic-trained expert in Ehlers-Danlos syndromes. I'm joined once again today by my friend, colleague, and recurring co-host, Dr. Dacre Knight, Medical Director of the UVA Health EDS and Hypermobility Disorders Center.
[01:13] Through our ongoing partnership with UVA Health, we're bringing you practical, evidence-informed strategies to help people with joint hypermobility and related conditions live better. Today, we're addressing some of your questions. We're going to be talking about what doctors tell Medicaid, complications related to surgery, PRP, the PICL procedure, IV infusions, the Zebra Club, and so much more. This podcast is for education only and is not a substitute for personalized medical advice. Stay to the end for a hypermobility hack. Here we go.
[01:45] Well, I'm super excited to be back with Dr. Dacre Knight, and today we're going to be addressing some of your fan questions. How are you doing today?

[01:53] Dacre Knight: Doing well. Good to see you again, Dr. Bluestein. Glad to get through this exciting list of questions here we can discuss.

[02:01] Dr. Linda Bluestein: We get so many questions and so much feedback. A lot of these are questions, but some are comments and things that I know people love to hear their comments read on air. So we're going to do a combination of things today.
[02:09] So the first question is from Brittany, and she said, I have a question for the next time you do a Q&A. I have surgery scheduled. My surgeon stated that he has operated on many EDS patients and believes the post-surgical complications are overhyped. How would you respond to this? Would you like to go first?

[02:28] Dacre Knight: Why not? Sure, let's go for it. I understand the sentiment that a surgeon wants to reassure patients that the surgical indications are clear, that the outcomes are expected and appropriate for what may be the risks involved.
[02:49] As far as being overhyped — in the area of EDS and hypermobility disorders, I think we've come to an understanding that there's a lot of extra care we need to put in, in consideration of what could be consequences and risks. So I would generally say it's less overhyped and might be more underhyped. In that sense, I would say that as far as surgical recoveries go, by and large, our patients do do well with surgery. Yes, there are some added risks, and I'll turn to you for your expertise on what those may be. But as far as the outcomes go, the things that I see most commonly are delayed healing, most commonly. Wound dehiscence and possible infections can happen — that's certainly possible, but it's definitely on the rare end of things.
[03:43] So the surgeon might be right to say things are a little bit overhyped in that regard, because I would want to make sure that my patients go to the right surgeons who are careful and mindful of recoveries and response to complications that may be associated with EDS.

[04:25] Dr. Linda Bluestein: Yeah. And this might be an unpopular thing to say — however, I do feel like with surgeons, it's a little trickier than with non-surgical specialists because the technical aspects are so important. And sometimes somebody who might come across as not caring, or almost even gaslighting — like, "oh no, it doesn't matter that you have EDS" — they might technically be an excellent surgeon, but they're not as aware of EDS. And maybe they are doing a type of surgery on you where you are not really at a very high risk of having a complication.
[04:56] Ideally you get both, right? Ideally you get a surgeon who also has a decent bedside manner. I had a family member who had surgery recently and I went with them to their pre-op appointment, and I would say the bedside manner was not the best, but the surgical outcome was fantastic. So I think it's a little trickier than when you are talking about somebody coming to see me, somebody coming to see you, somebody coming to UVA to see some of your medical specialists.
[05:29] The first thing is: do you feel like you're being totally gaslit and this person really doesn't care? In which case, that's obviously a bit concerning, if not very concerning. Are they going to listen to you if you have a post-op complication? You want to make sure that they do. But I agree, most of my patients do quite well with surgery. Usually things go pretty well. Of course, if they have mast cell activation syndrome, that can add a whole other layer. But I think the technical aspects of surgery are also so important to be keeping in mind.

[06:01] Dacre Knight: Yeah. And I would agree. The technical aspects, the technique of the surgery — you talk to surgeons and they've got different approaches and different complication rates and things like that. So it definitely pays off to do the homework on who the surgeon is and who you're going to see.

[06:18] Dr. Linda Bluestein: And volume matters a lot, right? If you go to somebody who does a ton of whatever it is that you're having done, that's generally speaking a lot better than going to somebody who just does it once in a while.

[06:30] Dacre Knight: It's just like you and I — we practice in the area of EDS and hypermobility disorders, so we see these things more commonly rather than the next pain doc or internist or pediatrician who may not see these things very commonly. So there are going to be differences in treatment strategies between us.

[06:48] Dr. Linda Bluestein: Good analogy. I like that.
[06:49] I want to read a comment from Nancy, who said: I just listened to your interview with Dr. Jocelyn Wittstein, and I was a cutter when I was a teenager. Dr. Wittstein had mentioned that she sees cutting more frequently in her patients who have EDS than in other patients. This person also said she had anxiety and depression, which is much improved after managing her mast cell activation syndrome and taking low-dose naltrexone. She found this compelling enough to write and reveal this. Thank you for your podcast. They are so helpful and informative.
[07:16] This is a comment, not a question, but I'm curious to ask you, Dr. Knight — do you think that cutting is more frequent in your patient population?

[07:28] Dacre Knight: It's an excellent point, Nancy, and well taken — and I think it's brave of you to share this information. It is something that I've certainly seen in my practice. How common is it and why is it more common? I don't really know. I don't know that we've gotten much data on this to say actually how much more common it is. We do know that there is certainly a much greater mental health burden from the disease and from the associated complications and all of the things that come with that. So that can add into some of the effects that may lead to cutting behaviors.
[08:11] Great to hear Nancy had some response from anxiety and depression with management of the mast cell activation — that's fantastic. If we can target some areas of uncontrolled medical problems and it helps with the global psychiatric condition as well, that's a win-win, killing two birds with one stone. And it makes sense, because it's often misunderstood that patients are told these problems are just psychological, whereas we know the underlying cause, when treated, actually improves the psychological conditions. So if we can get patients in earlier — we talk about early pediatric care with my colleagues here at University of Virginia — the idea is that if we can get the care in earlier and the symptoms treated earlier, then we may not have as many of these mental health and psychiatric manifestations.
[09:05] But have you seen that in your practice, Dr. Bluestein?

[09:09] Dr. Linda Bluestein: I don't know about cutting specifically, but certainly the connection with neurodivergence — ADHD, autism — I see that a lot. And the mental health side definitely as well. I wonder if all of that could be contributing factors. And I notice in my patients with low-dose naltrexone, a multitude of benefits: oftentimes improved sleep, less anxiety, better pain control, et cetera. Do you observe that as well in your patients with low-dose naltrexone?

[09:41] Dacre Knight: For sure. And it's one of those things that if we can find some improvement in the symptoms with something like low-dose naltrexone, which is really relatively well tolerated — there may be some issues with the pharmacy and the compounding, but once you jump through those hoops, it's pretty easy and straightforward thereafter.
[10:06] I do find a lot of good, more global response when we're trying to target something like pain or muscle activation. I do see that there is some downstream benefit in other areas as well, whether it's mental health or gastrointestinal things. That said, it is an individualized approach for everyone. It may not be for every patient. So we don't just give a blanket prescription for anybody who walks in. Ideally, we can even find some improvement with modalities and supplements and things we've talked about in previous episodes. If we can get some improvement with non-prescriptive therapy, that is ideal.

[10:46] Dr. Linda Bluestein: What was interesting when I was going through these questions — and we're going to get to one from a family physician in a second — I was shocked at how many of the questions came from healthcare professionals. That's really exciting to me, because we want to reach patients, we want to reach caregivers, we want to reach everybody. But when we educate and inform healthcare practitioners, it's like the butterfly effect — we can affect so many more lives. So I was really excited to see that.
[11:13] And this next question is from Alice. She writes: Hello, Dr. Bluestein. As a family physician in Syracuse, New York, I am so glad to have found your podcast. I am really working to educate myself with your help. My question is if you know of any centers or specialists with your expertise that take Medicaid. Thank you. Does UVA take Medicaid?

[11:32] Dacre Knight: We do. And that's one of the things that I like about being here — we can be accessible to patients who are otherwise underserved. It's a great question, Alice. And likewise, Dr. Bluestein, I'm glad to hear that there are providers out there — give someone a fish versus teaching them to fish, right? It's got compounding benefits. If we can spread the message and others can share that, the impact multiplies.
Academic institutions are more likely to take Medicaid; private practices are less likely. I'll be the first to say — definitely not the last — that we need more care for Ehlers-Danlos syndromes in larger academic institutions that provide Medicare and Medicaid coverage more widely, so that more patients can be seen. That's really a very big obstacle for some patients.

[12:29] Dr. Linda Bluestein: Well, I was glad she asked that question — it's really important to discuss. Okay, the next question is from Linda — different Linda, of course.
She writes: Praying you could give me some guidance. I was diagnosed with a rare adipose disease, Dercum's disease, by Dr. Karen Herbst, who we've had on this podcast. Recently I've been experiencing extreme pain in the back of my neck around C2, C3. I had a concussion after falling backwards in the grocery store and hitting the metal shelves. I am seeing a vestibular doctor. She noticed that my left eye is not tracking properly and wants me to make an appointment with a neuro-ophthalmologist. She has headaches, tinnitus, and nausea that she describes as over the top. And she wants to know if PRP — platelet-rich plasma injections — or the PICL procedure — percutaneous injection of cervical ligaments — will help. Any suggestions would be appreciated. I have to take a leave from work at age 73 — she's still working as a paraeducator in a middle school. And then she asked, are you moving to Virginia? Do you know of any doctor that can help me? I am near Pittsburgh, Pennsylvania.
That's a multi-part question. Do you want to tackle it?

[13:43] Dacre Knight: Yeah, there are different parts to it, but great question, Linda. And yes, Dr. Bluestein, you're welcome to move to Virginia anytime — we'll welcome you with open arms.
So, regarding the headaches, tinnitus, and nausea, those can certainly be very debilitating. Getting into a vestibular doctor is, I think, a very appropriate place to start. And if there are eye tracking issues, a neuro-ophthalmologist would be well equipped to evaluate that.
[14:25] About the PRP or the PICL — will it help? The data is growing. It looks pretty good for PRP as far as I can grasp it. Dr. Bluestein, you might have more comments on that. But those are in the armamentarium of resources we have when looking for treatments that are not as invasive but also a little more advanced than the standard conservative therapies. And we want to keep Linda in the middle school doing what she's doing as much as we can — that's what we're about, trying to keep things functioning.

[15:12] Dr. Linda Bluestein: Sure. In my experience, I've had a lot of patients who have benefited from either PRP or the PICL procedure. As we often say, we need more data — we desperately need more data on both of those things. With PRP, I think we have quite a bit of data when it comes to some parts of the body, like knees — osteoarthritis of the knee, for example. I think there's some pretty compelling evidence for PRP there.
[15:37] But when it comes to the PICL procedure, it's a big decision. You're talking about receiving general anesthesia — I've been there to watch this being done — and a needle is placed in your throat, essentially, to access your upper cervical ligaments. We're talking about a high-risk area. On the other hand, if you are otherwise a surgical candidate and looking at a fusion surgery, you're talking about a high-risk procedure there too.
[16:06] So I think if somebody can — and maybe Linda has already done this — work on stabilizing their mast cells first, because as we talked about earlier, that can explain a lot of symptoms. If there's any ground to be gained there, for me that's always a first step before going to something like a PICL or a cervical fusion surgery. But that doesn't resolve everyone's symptoms by any means, so sometimes those kinds of procedures are necessary.
For Linda, who is near Pittsburgh, Pennsylvania — should she get on the waitlist for UVA?

[16:46] Dacre Knight: You're certainly welcome to, Linda, and we'd be glad to have you. I think maybe more accessible, though, is the Penn State program at Hershey. They've got some EDS clinicians there who can be very helpful, and I know they've worked with neuro-ophthalmologists. It's not Pittsburgh, but it is closer than Virginia, and they may be able to help. Penn State at Hershey Medical Center — I hope that works out.

[17:14] Dr. Linda Bluestein: You've spent a lot of time in university settings. When somebody goes to schedule an appointment, do they have the opportunity to choose who they're going to see, or does it go to the department? Or do they get assigned a doctor later?

[17:35] Dacre Knight: That's a very timely question because I had this question just about ten minutes before this call — a patient was asking about who they might be scheduled with. The short answer is that generally you can request to be seen by a specific provider. That's not unheard of. The providers themselves may have different availability, though — when is my next available versus Dr. Stevens's next available versus Dr. Cohen-Solomon's next available, and so forth.
[18:06] So there may be some preferences about that. Some patients say they just want the next available, which is perfectly appropriate. Some say, "I like the way that Dr. Stevens integrates mind-body therapy in her practice — I want to see her, and I'm willing to wait." That's usually how it can be accommodated.

[18:25] Dr. Linda Bluestein: Great. I think we should take a quick break, and when we come back we will address some more listener questions. We'll be right back.
[20:16] Okay, we're back with Dr. Knight and we are answering some fan questions today. So if you have a question, please send us a message. You can visit bendybodiespodcast.com, and maybe we will answer your question in the next episode.
[20:30] So our next comment is from Malini — I hope I'm pronouncing this right. She writes: Hi, thank you so much for being this voice for us bendy bodies. I've been following Jeannie Di Bod for all these years, and it's nice to know there is a parallel of that in the US. Please continue what you're doing. Thank you again.
[20:44] Thank you for the kind words, Malini. That really means a lot, and I don't plan on stopping anytime soon. Thank you for your message.

[20:58] Dacre Knight: I'll just say quickly, Dr. Bluestein — I actually had a patient who had just been working with Jeannie Di Bod and doing the Zebra Club activities, and it was very helpful for her. I love to see that when those improvements are found in a group coordinated effort with someone who's specialized in movement therapies, the progress can be really, really substantial. I'm glad to hear that from Malini as well.

[21:25] Dr. Linda Bluestein: I should add that I refer tons of people to the Zebra Club. In our EMR smart phrases — it's basically part of everyone's first note.

[21:36] Dacre Knight: Good to have on hand. Absolutely.

[21:39] Dr. Linda Bluestein: Very good to have on hand. What I love particularly about the Zebra Club is that whether you are bedridden or more functional, you can usually get some benefit.

[21:52] Dacre Knight: Start somewhere, right?

[21:53] Dr. Linda Bluestein: Anywhere. Yeah.
[26:51] Okay, the next question is from Morgan. She says she has HSD, near hEDS, which is interesting, with low blood pressure, suspected dysautonomia, histamine-type symptoms, and a lot of medication and supplement sensitivity. A new clinic recommended an IV infusion containing saline plus magnesium, calcium, B complex, methylcobalamin, vitamin C, glutathione, taurine, and biotin — before her blood work was even back. She already takes some of these orally. Her question: In the EDS/HSD population, when, if ever, is this kind of IV therapy appropriate? Should it only be used when there's documented deficiency or a specific dysautonomia indication? And what risks or red flags should patients watch for if a provider recommends broad infusion therapies before a standard workup?

[26:51] Dacre Knight: Morgan, I think you're right to ask this question, and I would be careful. I definitely understand your hesitation.
[26:51] To the last point — yes, IV therapy can be appropriate and can be fine, certainly in patients who are hypovolemic, have low blood volume, are having a lot of POTS symptoms, and have severe issues with that. And as you mentioned, Morgan, for documented deficiencies that can be provided by IV. Sometimes we have to provide iron supplementation by IV, for example, if patients have a lot of GI disturbance with taking oral iron. That's one example.
But if a provider is recommending this before a workup — yes, there are concerns there. We always go through a full clinical evaluation, physical exam, some simple laboratory assessments based on that exam, and then decide the treatment course. That's really standard of care for any medical issue throughout the world of healthcare. I would pause for a moment on that and maybe seek a second opinion if possible.

[26:51] Dr. Linda Bluestein: Yeah, totally agree. The acronym that I know people have heard us talk about over and over again — MEN'S PMMS, which I use to describe the method I use to treat patients — so many of those elements are really, really important. The first M is specifically movement, and the last M is intentionally medications, and the middle one is modalities. That's another way to think about this: you can do all the IV therapy in the world, but if you're not moving — and of course sometimes you have to do other things in order to be able to move more — this is something that can benefit some people, as you indicated, but we have to be very cautious.
[26:51] And especially because the people who are often prescribing these things have a conflict of interest — they're the ones who are going to make money off of it. So you really have to put your skeptic's hat on and also think about the potential complications or risks. There's risk of vein irritation, infection, shifts in electrolytes, changes in blood pressure, reactions to preservatives or excipients, and you could get a symptom flare if you have MCAS, for example.
[26:51] While I wish we could do the same infusion on everyone — wouldn't that be nice?

[26:51] Dacre Knight: Magic medicine. Yeah.

[26:51] Dr. Linda Bluestein: Magic medicine. It'd be great if everyone could go in, get a little of this, a little of that, and actually get some meaningful improvement. But unfortunately it's way more complicated than that. We need to make sure that we're paying attention to the red flags, which are things like a clinic that recommends the same infusion to everyone, they don't review labs or medications first — so Morgan, you're right on track there — not adjusting doses for your size or sensitivities, dismissing prior reactions, pressuring you into packages, or not having a clear plan for monitoring and managing adverse reactions. Morgan's question was a really good one.

[26:51] Dacre Knight: That's a good one. And a lot of those components of the infusion are relatively benign — vitamin C is not a huge concern, calcium, things like that. But you can still get to a point where you're having too much of those things, and too much of anything is a bad thing. Not to mention the cost and the time involved.

[26:51] Dr. Linda Bluestein: Exactly. Absolutely. The cost is so important.
[26:51] And I want to read a comment from Gary — Gary T. When I saw this, at first I was like, well, who is this person? This is a CRNA that I used to work with for many, many years. Gary sent a comment: "Love your podcast. Love hearing your sweet, kind voice. Thank you for the great memories. Your friend, Gary."
[26:51] Gary, hi — I miss you. I loved working with you in the OR, and I just wanted to read that on air.

[26:51] Dacre Knight: I'm glad he's still keeping track of Dr. Bluestein. That's excellent.

[26:51] Dr. Linda Bluestein: I know. I was so surprised — wow, you're still keeping track.
[26:51] Okay. So the next question comes from Ray. He writes: Greetings. Really enjoy your podcast. I love me some good research, and I've appreciated how much compassionate understanding there is combined with science that really seems relatable. Lately, I've seen doctors online talk about EDS as possibly epigenetic in some cases. Maybe you can imagine the comments were heated and all over the place, but I wondered if you and Dr. Knight might be able to say something about this issue, or if you have any geneticist guests who can touch on this also. How true, wrong, or merely hypothetical is this claim? Is there any basis that in EDS, no matter how it might present, there is an epigenetic component? This issue really got my brain spinning. Even if you never touch on this specific topic, keep doing what you're doing. I love listening to you and your guests.

[27:36] Dacre Knight: Well, Ray, keep doing what you're doing too, which is trying to learn more — that's what we're all trying to do. And I can sympathize that your brain was spinning when you went through the discussion forums, where things get heated and conflicting and just confusing. It's like, who knows what anymore?
[27:58] I would say there's still a lot we don't know, but we try to make sense of what we do know and keep moving forward with the patient's best interest in mind. A lot of the discussion about mechanisms and origins and causes of hypermobile EDS and hypermobility disorders really is hypothetical at this point. Epigenetic or other multifactorial causes, or polygenic causes — those all come into the picture because we really don't know.
[28:32] What we do know is that there have been some fairly good attempts at trying to uncover genetic mechanisms. For example, the EDS Society endorsed the HEDGE study — whole genome sequencing of quite a lot of patients — and it didn't find a single causative gene that looked like a strong candidate. There have been other groups, like Chip Norris's lab at MUSC, who have done some of this work too and identified some genes of interest, but again, not necessarily causative for hEDS or HSD.
[29:07] Is this something provable? Hopefully it is, but it's still a ways off. That's a lot of the research we're trying to tie into and conduct with the EDS Society at large and other institutions, and help them with their biobanking initiatives, to get as much understanding of these conditions as possible.

[29:30] Dr. Linda Bluestein: Love how you answered that. I know we have a bit of a time constraint today, so let's jump into our hack before we say see you next time. Do you have a hack for us?

[29:40] Dacre Knight: I think it's a great one pointed out by a previous listener. If you are looking at different clinicians — and these are growing in the world of EDS and HSD — if you are approached without a clear, intentional workup of your symptoms, and you're given a prescriptive therapy right away—

[30:07] Dr. Linda Bluestein: Yeah.

[30:07] Dacre Knight: —then I would definitely take a pause there. Whether it means going back and listening to some more Bendy Bodies podcasts, or talking to friends or family who are knowledgeable about these conditions, it's probably a point where you need to get another opinion. I know these opinions are kind of few and far between, but it's better safe than sorry. Your safety is of utmost importance.

[30:28] Dr. Linda Bluestein: I love that hack. Well, thank you so much for joining me today. To everyone listening, please visit bendybodiespodcast.com and submit your questions and your comments — we love hearing from you. And Dr. Knight, thank you so much for joining me again today. We will see you next time on the Bendy Bodies Podcast.

[30:47] Dacre Knight: Thanks so much, Dr. Bluestein. Always a pleasure.

[31:24] Dr. Linda Bluestein: Thank you for listening to this week's episode of the Bendy Bodies Podcast. You can help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it. These small actions truly make a difference in raising awareness about these conditions that are still widely misunderstood. And don't forget, full video episodes are available every week on YouTube.
[31:58] As many of you know, my passion is helping people better understand and navigate symptomatic joint hypermobility. In addition to my clinical and educational work, I offer one-on-one coaching, professional mentorship for healthcare professionals, and expert witness services. If you'd like to learn more, please visit the services page at hypermobilitymd.com. You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, and LinkedIn, all at HypermobilityMD.
[32:24] As part of our collaboration with the UVA Health EDS and Hypermobility Disorders Center, we also want to share a few helpful resources. For questions or appointment inquiries, you can contact them at [email protected]. That's the letter R, [email protected].
[32:48] Our incredible production team is Human Content. You can find them on TikTok and Instagram at Human Content Pods. We love bringing on guests with unique perspectives to share. However, these unscripted discussions do not necessarily reflect my views or opinions. Furthermore, perspectives expressed within Bendy Bodies media, including this podcast, do not reflect the views or opinions held by Human Content Inc.
[33:12] Although we may share healthcare perspectives on this podcast, no statements made on Bendy Bodies should be considered medical advice. Listening to or watching this podcast does not constitute a doctor-patient relationship. Please always consult a qualified healthcare provider regarding your own care. For information about the Bendy Bodies program disclaimer and ethics policy, submission verification and licensing terms, HIPAA release terms, or to get in touch with us, please visit bendybodiespodcast.com.
[33:40] Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.