Reversing Brain Fog & Inflammation with Dr. Ilene Ruhoy

[00:40] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. I am so excited to chat today with my very dear friend and colleague, Dr. Ilene Ruhoy. She and I are good friends, so you never know where this conversation is going to go, but I guarantee you that it will be interesting.
[01:00] Dr. Ruhoy is a board-certified neurologist with a PhD in environmental toxicology. She completed a fellowship in integrative medicine with Dr. Andrew Weil at the University of Arizona. Her interests include connective tissue disorders such as Ehlers-Danlos syndromes, autoimmune neurologic disorders, neuromuscular disorders, intracranial vascular and pressure disorders, infection-associated neurologic conditions such as long COVID, ME/CFS, and PANS/PANDAS, traumatic and inflammatory brain injury, mitochondrial disease, neurodegeneration, and exposure illness. Dr. Ruhoy has a private concierge practice in Seattle, Washington, and has become a well-sought-after speaker on the role of connective tissue in neurologic disease.
[01:41] I am so excited about this conversation. Dr. Ruhoy and I spoke about brain fog and cognitive dysfunction quite a few episodes ago, back in episode 90, and we'll link that in the show notes. Finally, we're going to talk today about treatment of cognitive dysfunction, and I'm sure we're going to dig into all kinds of other topics as well. Cognitive problems are so common with the triad: mast cell activation syndrome, dysautonomia, and the Ehlers-Danlos syndromes, hypermobility spectrum disorders. So this is a really important conversation.
[02:11] As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. Here we go.
[02:25] All right, so excited to finally chat with Dr. Ruhoy again. We've been trying to do this for such a long time, and I can't believe we're finally going to get to chat.

[02:32] Dr. Ilene Ruhoy: I agree. I'm very excited to be here. Thank you for inviting me again.

[02:39] Dr. Linda Bluestein: Of course, of course. So we talked— well, I didn't want to think about how long ago this was, but we had an episode about brain fog and cognitive dysfunction, and I want to make sure that people go and check that episode out, which was episode 90. That was such a great conversation with Dr. Ruhoy and so much in-depth information that we really thought we needed to come back and have another conversation about treatments of brain fog and also talk about your upcoming book, of course.

[03:06] Dr. Ilene Ruhoy: Yes.

[03:07] Dr. Linda Bluestein: So when it comes to cognitive dysfunction — and we're going to use that term and/or brain fog — is that pretty fair to use those interchangeably, do you think?

[03:17] Dr. Ilene Ruhoy: I think it depends upon the patient. Sometimes it's not synonymous, but sometimes it is. I often say that brain fog is a patient experience. So very commonly when patients report brain fog, I will ask them further questions as to what that means. I will go down the list of cognitive impairment concerns — questions like: do you get lost in familiar places? Do you forget familiar names? Do you forget what the conversation is about? Do you have loss of time or loss of awareness? Just to make sure that there is truly no cognitive impairment in a more classic sense that they're experiencing. But usually not. Usually it's this brain fog, which is sort of like thinking through a fog, basically — a very sluggish kind of feeling.
[03:59] And most importantly, they feel fatigued from intense cognitive work. So being asked to learn something new, or being asked to follow a chapter in a book or a television show, even watching a screen, can create a real sense that their brain is just no longer functioning and they have to close their eyes in a dark room and rest.

[04:17] Dr. Linda Bluestein: And does that seem to help, taking a break like that?

[04:23] Dr. Ilene Ruhoy: It does, actually. It doesn't completely resolve the fatigue symptom itself, because of course that's one of their underlying symptoms of whatever their illness is. And so it's very easily triggered — there's a very low threshold for those kinds of symptoms to recur — but they will get some respite for sure if they're allowed to just lie in a dark room without any sensory stimuli and close their eyes.
[04:49] One of the problems when there is brain fog and any kind of cognitive challenge is that the brain is very sensitive to sensory stimuli, to external stimuli. So things like noise, light, and sound. Patients can't be in a very crowded room, for example. If there's a lot of ambient noise, they can't hear the person talking to them, or they are triggered by that person. And it's usually got nothing to do with the person themselves, but rather the sound of their voice. And if there's a lot of fragrances in the air — I have patients who tell me they can't go to malls any longer because the stores spray fragrance into the air. So the brain just becomes very sensitive, very hypersensitive to sensory stimuli from the environment.

[05:37] Dr. Linda Bluestein: That's really interesting, because I'm thinking also about our patients who have hyperacusis, sensitivity to sounds. I happen to be one of those people, and I'm going to share something a little more personal — my husband's chewing.

[05:52] Dr. Ilene Ruhoy: There are times where it drives me nuts.

[05:55] Dr. Linda Bluestein: And it's like, I love him dearly and he doesn't listen to the podcast, so it's okay to share this, I think.

[06:01] Dr. Ilene Ruhoy: I totally understand.

[06:04] Dr. Linda Bluestein: Yeah. But it's fascinating because there was a French study that looked at the prevalence of different things in people with conditions that look like Ehlers-Danlos syndromes. They also looked at other musculoskeletal clinics, and hyperacusis was one of the things that showed up on that list. So it was really interesting.

[06:24] Dr. Ilene Ruhoy: Yeah, for sure. Connective tissue disorders in general are a risk factor for a lot of these things. So I think it's not surprising to learn that clinics and other groups that see a lot of patients with hyperacusis are seeing a lot of connective tissue disorder patients, because it does seem to be a risk factor for these symptoms.

[06:48] Dr. Linda Bluestein: And I'm glad you mentioned fatigue right off the bat, because I know before I opened my clinic, I really did not realize how many people would be struggling with severe, severe fatigue. With a lot of my patients, I'm finding that their pain has gotten a lot better, but their fatigue really persists. So I'm really excited to get some ideas from you for managing that. In terms of medications that can help with cognitive dysfunction, brain fog, fatigue — what are some things that come to mind?

[07:23] Dr. Ilene Ruhoy: So I usually start with the usual suspects that I think a lot of doctors do, with regards to mast cell management. My triad that I start most patients on — if not all — is LDN, ketotifen, and cromolyn, just to stabilize the mast cells.
I personally — and I'm probably in the minority on this opinion — don't think that these symptoms are related to, or at least not primarily related to, a histamine concern. So I don't really find a whole lot of benefit from antihistamines in my patient population, which I recognize is skewed. Who's going to see a neurologist if they don't really need to? But I do a lot of mast cell stabilization and I do a lot of immunotherapy kinds of approaches, because I see this as an immune dysregulation problem.
[08:14] A lot of these illnesses are what we consider post-infectious illnesses. Obviously long COVID, and ME/CFS has long been thought to be a post-infectious illness — or post-exposure illness, as I like to call it, because it's not only infection that we're exposed to. So while I see a very strong mast cell component, I don't see it as necessarily a primary histamine problem. Most of the symptoms cannot be related to classic histamine responses. I find that stabilizing the mast cells and regulating the immune system is way more effective than the antihistamine approach.

[08:46] Dr. Linda Bluestein: And when you're talking about regulating the immune system, are you talking about IVIG or other things?

[08:51] Dr. Ilene Ruhoy: Immunomodulators, yes. I definitely start with what I refer to as the more broad-spectrum options, which is IVIG. I do a lot of plasmapheresis. And because there are so many targeted immunotherapies available these days — the JAK-STAT inhibitors, the tyrosine kinase inhibitors, and so on — I still like the old guard because we know so much about them, though they do suppress the immune system fairly significantly. So I try to avoid them for the most part, but I will go to them if we have to — meaning cyclophosphamide, CellCept, methotrexate, azathioprine. There's so much data on them that doctors are well armed with what to look for in terms of lab surveillance and side effects. We've used them for decades now.
[09:44] The targeted immunotherapies I think have great promise and I'm finding great use of them when I need to go there. But I really get a lot of traction for patients with IVIG and plasmapheresis. I find them a lot safer with a lot less toxicity concerns, and easier to get done for the patient — not easy in the sense of insurance approval, of course, but just easier logistically for the patient.

[10:11] Dr. Linda Bluestein: And tell me more about the plasmapheresis — who's a good candidate for that, and how does that work in terms of the number of times you might need to do it and some of the details?

[10:23] Dr. Ilene Ruhoy: So apheresis is sort of an umbrella term and there are lots of different types of machines. Some machines have particular filters where they filter out a particular parameter that's in the plasma. We use a centrifugation system. So we basically take out the blood, it's centrifuged, then it's separated and we remove the plasma — and we don't return it. So it's not filtered and returned like some of the other machines will do.
There's also what's still called in some clinical scenarios a plasma exchange, where you get plasma from the blood bank and it is an exchange of plasma. But what we do is just remove the plasma, and the volume is replaced with albumin, which is the natural protein of the body. Albumin itself has anti-inflammatory properties. The body eventually renews the plasma component on its own.
[11:18] What we find is that removing the plasma does a lot of great things. As you probably know, it's an FDA-approved treatment for autoimmune diseases. We use it for several different autoimmune neurological disorders — myasthenia gravis being just one of them. It's a treatment well known to remove autoantibodies that circulate in the plasma. But the plasma also has other things that are removed by the centrifugation process, including a lot of the mast cell mediators, a lot of the inflammatory mediators, circulating viral RNA. It removes the autoantibodies. It also removes extracellular ATP, which can occur from mitochondrial failure. I'm finding more and more that that's a component of the fatigue that a lot of long COVID and ME/CFS patients experience.
[12:04] In fact, I do muscle biopsies and I have seen basically 100% of them be abnormal at this point. It's too small an N to say definitively that it's always the case, but it's an exciting development that I think deserves further looking into. When the mitochondria start to fail, ATP is extruded from the cell. Intracellular ATP is critical for the functioning of the cell, but extracellular ATP is actually toxic to the cell. It's got a very short half-life, so it's not accumulating in crazy amounts, but regardless it's in the plasma — and so it's being removed by plasmapheresis. I think that's one of the reasons why patients do so well with it.
[12:49] With regards to how many sessions you need: first of all, it's not covered by insurance, which is a problem, because these are off-label indications despite the fact that it's an FDA-approved treatment. It's a 3-hour treatment, it requires a big machine and a technically competent nurse, so it's an expensive treatment to administer and to receive. That's an obstacle I wish I could fix tomorrow, but I can't.
The initial protocol is 6 treatments — 2 a week for 3 weeks, basically. Some patients, in about 6 months' time, feel like their symptoms are recurring, and so they come back for what we refer to as a maintenance or booster session, which is usually just 2 treatments. And then they seem to do well thereafter. In fact, half of them don't need that maintenance session at all.

[13:52] Dr. Linda Bluestein: Oh, really?

[13:53] Dr. Ilene Ruhoy: They seem to just continue to do well. And largely because after those 6 sessions, I tend to continue with immunotherapy support — sometimes I'll keep them on IVIG at lower dosages for a period of time, other times I'll work on their mast cells as I had been from the very beginning. But now the medications seem to have more efficacy because we've sort of cleaned out what the medications might have to contend with. The things that were floating in the plasma that were presumably causing the problem are no longer present.
[14:29] It certainly makes IVIG work a lot faster. I've seen that over and over again. Usually if there are a few sessions of plasmapheresis beforehand, the IVIG seems to be a lot more efficacious and works at a much faster rate. Oftentimes you have to wait months before you know if IVIG is helpful at all. With plasmapheresis first, you usually know within 1 to 2 months if IVIG has been helpful.
[15:04] I hate the word "cleansing" because of the connotations, but we really are cleaning the plasma — clearing the body of unhealthy plasma products. I think that's key to the initiation of successful treatment, in my opinion.

[15:26] Dr. Linda Bluestein: And I'm glad you circled back to what happens after the sessions are over, because that's what I was thinking as well. When the body makes more plasma, wouldn't it just create more of the things that were causing the problem in the first place? The plasma — or the part that separates from the red cells when you spin it down, just so people know what plasma is — wouldn't it recreate those same issues?
[15:42] So in terms of those medications you mentioned — ketotifen, cromolyn, and low-dose naltrexone — there are some people for whom that regimen alone is sufficient, I take it?

[16:01] Dr. Ilene Ruhoy: Oh yes, absolutely. It's amazing — some patients really do well with those medications. But some patients, largely because of the mast cell activity, are very sensitive to these medications. And I know we've talked on the Mastermind list and the group that we're both part of about the role of excipients, and that definitely plays a role. I have found that a lot of patients who have had issues with excipients, preservatives, fillers, or even supplements they take — that is less of a problem after plasmapheresis. I think it's because we're removing a lot of those mast cell mediators.
[16:36] It's important to note that there are 1,200 mediators of those mast cells, so it's well beyond histamine. A lot of those mediators serve to provoke more mast cell activity. Removing them gives those mast cells a break — a rest for a period of time. Not permanently, but for a period of time. If we can then go in after the plasmapheresis and further manage those mast cells as well as we can, I think it's giving patients a fighting chance. That is ultimately our goal — to counteract all of this inflammatory response that the body is encountering, which is creating this altered physiology that is causing their symptoms.

[17:30] Dr. Linda Bluestein: Right. And I think so many people are familiar with histamine being one of the mast cell mediators, and maybe tryptase, and some of the other cytokines or proteases. But not 1,200 different things — it's kind of crazy.

[17:47] Dr. Ilene Ruhoy: You can't test for all 1,200, right? That's the problem. You can test for a select few, and then we get focused on those select few. We haven't developed assays for all the other mediators. So we tend to focus on those select few, which sometimes works well in the patient's interest, but oftentimes it doesn't.

[18:10] Dr. Linda Bluestein: Mm-hmm. And histamine itself — how does that affect the brain?

[18:15] Dr. Ilene Ruhoy: There are histaminergic neurons and there are H3 receptors that are unique to the central nervous system. There isn't enough research to say definitively how it affects the brain, but we know that the H3 has high affinity for histamine, and we know that those receptors can modulate the level of histamine that is released in the brain. The antihistamines, we also know, lower migraine threshold and lower seizure threshold. So I think histamine has a neuroprotective role.
[18:51] I know this is sacrilegious — wait, histamine does something good? Right. It's not always a foe. It can be a friend. Obviously with mast cell activation syndrome, histamine can be a big foe — it can certainly be an enemy because it's excessive. But clearly, mast cells are meant to be our friend, meant to protect us. So there is a good role for histamine. And I think that's been lost in a lot of the talk about mast cell activation syndrome — what really was nature's intended role for histamine?
The fact that there are histaminergic neurons and specific histamine receptors in the brain that are not found elsewhere — and certainly not counteracted by all the antihistamines on the over-the-counter market — tells me there is something more that we should talk about and explore and research. I often think about all of the unopposed histamine floating around because everyone's on H1 and H2 blockers. I often wonder what that is doing. Those H3 receptors have such high affinity for histamine that they're just gobbling it up. How is that changing the function of those receptors, and how is it changing the function of histamine in the brain? And why are there so many neurologic manifestations, for example, in EDS patients with MCAS? I think the answer lies within that. I don't yet have a definitive answer, but I plan on figuring it out.

[20:34] Dr. Linda Bluestein: If anyone's going to figure it out, it's going to be you, that's for sure. And in terms of the H3 receptors — we don't have medications yet for H3 antihistamines, do we?

[20:48] Dr. Ilene Ruhoy: Well, there are some medications actually. One is not available in this country — betahistine, or something like that. But then there's also Wakix, pitolisant, which is an H3 inverse agonist. So it does work on the H3, but it has a different kind of receptor property. I've actually tried to use it for my patient population. It's indicated for narcolepsy, and I cannot get it approved without a diagnosis of narcolepsy. The few times a patient paid out of pocket for it — one, it's expensive, but two, I didn't see a great enough response to feel it was worthy of the price they were paying. To be fair, I don't think I let them try it long enough when I think about the physiology. I'm definitely considering revisiting that question.

[21:44] Dr. Linda Bluestein: And speaking of medications and Masterminds — we get into such interesting conversations in there sometimes. There's so much more talk nowadays about the GLP-1 receptor agonists, like semaglutide, which goes by Wegovy or Ozempic. I read somewhere that they could be helpful for intracranial hypertension. Do you have any thoughts about that class of medications? I think somebody shared today something about how they can help with 60 different conditions but also make 19 conditions worse. We don't have time to go into all of that, but any thoughts? Because I know intracranial hypertension — high pressure inside the head — is definitely something you see in your patients, right? High and low.

[22:44] Dr. Ilene Ruhoy: Yes. To be fair, I haven't used the GLP-1s to treat that just yet. But I will say I've used GLP-1s for mast cell activation, for excessive muscle activity, and for fatigue. I think there's something to the glucose regulation — the glucose metabolism regulation of the glucagon-like peptides — that really does seem to help a lot of patients' symptoms. And then I think about how that speaks to the mitochondria. If we think about glucose and its regulation and how it's fed to the mitochondria, which loves that glucose molecule for electron transport chain activity, there's a connection there.
[23:31] Mitochondria are in every cell of every organ, and it's interesting that GLP-1s might treat elevated intracranial pressure — which, like I said, I haven't tried them for yet, but I'm certainly willing to try, because a lot of my patients have refractory intracranial hypertension and don't tolerate the classic medications like acetazolamide. It's a sulfa drug, so you can't even do topiramate for those patients. Sometimes I've gone to zonisamide, which they tend to tolerate a little bit better than acetazolamide, but it's not nearly as effective. So I've been trying different things. Yeah, I'm going to try the GLP-1s now.

[24:10] Dr. Linda Bluestein: That's just something I came across the other day. And in terms of medications and/or supplements that can make cognitive problems and/or brain fog worse — are there certain things that come to mind?

[24:24] Dr. Ilene Ruhoy: I'm not a big fan of supplements, and I think everyone knows this about me. My patients are just too sick to waste their money on supplements — it's not going to move the needle enough for them. I think supplements have a supportive role, and there will be a time in their recovery trajectory where I say, okay, let's support this process and add some of these supplements. But early on, I don't think it's useful. When patients come to me with a list of supplements they're taking, I cross most of them off.
[25:01] Having said all that, there are a couple that I'm a big fan of. I like quercetin and luteolin for the mast cells — I think they're very effective. I like palmitoylethanolamide, otherwise known as PEA, which really helps pain and inflammation. I like NAC.

[25:23] Dr. Linda Bluestein: N-acetylcysteine.

[25:23] Dr. Ilene Ruhoy: It's a precursor of glutathione, which is really what I like. Glutathione itself, unless it's liposomal, is not that bioavailable — though I'm still not entirely sure about that. So NAC as a precursor is what I go to. And magnesium — I think we're all magnesium deficient. So those are the only supplements I would support early on in treatment plans. I think supplements are a waste of money for the most part. I'm going to say a lot of sacrilegious things today.

[25:58] Dr. Linda Bluestein: That's okay. I love it. I think it's very important, because it's just become the Wild West, you know? And it's so frustrating because I'm sure you get this too — people come in having gone so many different places and in some cases tried some really crazy things.

[26:17] Dr. Ilene Ruhoy: Crazy things. I have to look stuff up half the time. They'll say, "What do you think about this? I was told to do this." And I have to Google it. The Wild West is a perfect way of describing it. And it scares me for these patients, because there's the potential of making things worse for sure.

[26:17] Dr. Linda Bluestein: Right.

[26:40] Dr. Ilene Ruhoy: Obviously you don't want that to happen to them, so you try to make reasonable decisions. And you also try not to make them feel badly that they've been doing this for so long. I'm like a bleeding heart — I always feel badly about everything. I try very hard to say, "Listen, I don't think this has been harming you, but I think it's a waste of your money and I don't think it's helping you."
[27:10] But it is the Wild West, and that's a little bit scary to me. These things aren't even regulated. There was a study a long time ago — I have to pull it out — where they took bottles of the same supplement and put them through a spectroscopy machine and found that every capsule had a different amount of the compound labeled on the outside. In fact, some capsules had none of it at all.

[27:37] Dr. Linda Bluestein: Oh, wow.

[27:37] Dr. Ilene Ruhoy: So you don't really even know what you're buying sometimes. You have to go with well-respected brands, and that can take time to vet — their extraction technology, their methodology. Way back when, I took a course in herbal formulations just to learn more, because I did a whole integrative medicine fellowship and was really into using plants as medicine. Part of the courses involved visiting places where they make these formulations and tinctures. And so I learned a lot about extraction technology — which is why I say those terms like they're nothing. But it did make me realize that the methodology does matter. Obviously in science and medicine we know that, which is why methodology has to be included in papers. It really does matter.

[28:45] Dr. Linda Bluestein: And I feel like people with the triad — or the pentad, or septad, whatever number you want to include in terms of these overlapping conditions — they're such a vulnerable group because they're desperate for help. And they're such a poor match for our current medical culture where you're in and out of an appointment quickly, with the doctor for maybe 5 minutes, and you have way too many concerns to really get those addressed well. So they hear about these other things, and a lot of the charlatans are very good at promising cures. It's really, really tough.
Speaking of which, I read something recently about plasmalogens. Are you familiar with that?

[29:45] Dr. Ilene Ruhoy: Lots of people have asked me about plasmalogens and I did a quick look. To be honest, I don't yet have a formal opinion. It's on my long list of things I need to do deep dives on, just because I want to be sure that I guide patients appropriately.

[30:04] Dr. Linda Bluestein: Sounds like another episode.

[30:08] Dr. Ilene Ruhoy: We should do an episode on plasmalogens.

[30:10] Dr. Linda Bluestein: That would be great. We're going to take a quick break and when we come back, we are going to talk about your book.
[31:13] Okay, we're back with Dr. Ilene Ruhoy, who is an incredible neurologist and environmental toxicologist with a PhD in environmental toxicology. She has recently written a book which I am so eager to hear more about. I was very fortunate to get to preview it, but I would love to hear what's going on with the book, when it's coming out, and those kinds of things.

[31:37] Dr. Ilene Ruhoy: Yeah, I'm really excited. It's called Invisible No More, and it tackles long COVID, ME/CFS, and all the comorbid diagnoses as best as it can. It's a real exciting project for me — it's actually my first book. I've never authored a book myself. It took a long time to write, so a lot of it was written over 2 years ago, believe it or not. Part of me worries about how relevant some of what I say in it is, but I think there's still relevance regardless, because chronic illness is chronic illness. It comes out June 17th, 2025, and it is available for pre-order right now.
[32:15] It starts with my story. I was a patient 10 years ago and no one would listen to me. I wasn't feeling well, I couldn't figure out what was wrong, and I went to lots of doctors — including people I knew, people who knew me — and I thought they would take me seriously. But I was wrong. In the end, they saw me first as female and second as a neurologist. Nobody took me seriously. I just needed an MRI, and no one would order it for me because they didn't want to "feed into my hysteria." They told me I knew too much, that I was stressed out, that I was anxious, that I missed my family. I always wonder if they would have said that to a man.
[32:58] I spent almost a year suffering, and things just kept getting worse. My neuro exam was normal, my labs were normal. Symptoms just kept getting worse and no one was taking me seriously. Finally, I got to a point where I couldn't get out of bed in the morning. I went to an internist and I just cried and said, please order me an MRI. Her words were, "When a neurologist asks for an MRI of the brain, you order an MRI of the brain." And so she did. When I came out of the MRI machine, the tech said, "Go right to the ER. The radiologist called. You need to go to the ER." That's sort of where it all began.
[33:51] I'm so angry, because that almost year that I wasted trying to get someone to believe me really did have consequences. That's what I go into in the book. And when I was done with my journey and I opened a private practice, I realized I just can't allow that to happen to other people. While clearly my patients' diagnoses are not obvious on an MRI of the brain, I know what it's like not to be believed. I know what it's like not to be taken seriously. I know what it's like to be told, "Oh, you're just anxious."
So I never do that to patients. I meet them where they are, and I believe what they tell me unless they give me a reason not to — which has maybe happened once in my entire career. When you believe a patient, things just get done. There's a therapeutic relationship that automatically occurs, and then you go on that journey with that patient of trying to figure out what's going on. That's the part I love.
[34:55] To be honest, I was a little burnt out on medicine, but this has renewed my passion for it. I love neurology again. I love medicine again. I love working with patients again. I think there's such burnout because doctors aren't given the time to really connect with their patients anymore. I know a lot of patients like to complain about doctors, and I try to defend them, because I think the healthcare system is broken. Doctors who work in hospitals are only given 20 minutes to see a patient, and you're not going to get anything done in 20 minutes. The patient won't feel seen in 20 minutes. I think that's the problem — not the doctors. It's the system that breaks them down. And then when they don't have enough time to really deal with patients, they just decide to do the bare minimum: "What's your symptom? Here's a prescription." Or, "You're just anxious, don't worry about it."
[36:02] I knew what it was like not to feel heard, and I never want anyone to feel that way. If I was treated that way as a neurologist, I feel bad for these patients — how do they navigate the system?
[36:17] So that's why I do what I do. I start the book by telling that story and how it led me to where I am today, which I never thought I would be. Who knew a neurologist was going to become a connective tissue disorder specialist?

[36:34] Dr. Linda Bluestein: Right, right. Yeah.

[36:37] Dr. Ilene Ruhoy: But that's where it led me, because connective tissue disorders are such risk factors for everything else that can go wrong with the body. That's what creates complex presentations. They weren't getting answers from anyone else, and they came to see me. I decided I would believe them and see if I could help figure it out. It turns out that a lot of them had connective tissue compromise. So I dove deep into that, and here I am 10 years later.

[37:10] Dr. Linda Bluestein: And I feel so badly for physicians who have come out of training with a massive amount of debt and have to take a job in a traditional model. I have so many physician friends working in those kinds of models — 20 minutes for new patients, 10 minutes for returning patients. It's insane. Some people see like 40 patients in a day, which — I know there are people seeing that many patients in a day.

[37:40] Dr. Ilene Ruhoy: Oh, absolutely. Can you imagine?

[37:44] Dr. Linda Bluestein: No, I can't. Your caseload is like mine — you could never see that many people with these complex conditions in a day. Never. You can't serve them properly. But when you have this massive amount of debt and a young family, or whatever your situation is, you often find yourself in those kinds of jobs. And it's terrible because it's not satisfying, it's not good for the patient, it's not good for your sense of meaning — it's really problematic.

[38:17] Dr. Ilene Ruhoy: I completely agree. Everything you just said is spot on. And what's even more of a shame is that the insurance companies have made doctors look like we're the tools — we're the problem, the bad guys. The hospital administrators have done the same. Somehow the doctors are the scapegoats for everything that's wrong with the healthcare system, when we're the only ones trying to make it better for patients. The whole thing is so broken.

[38:51] Dr. Linda Bluestein: It really is. And we're the ones adding value. The insurance company — where's their value?

[38:58] Dr. Ilene Ruhoy: There is no value.

[38:59] Dr. Linda Bluestein: Yeah, there isn't. And the hospitals have such powerful lobbies. I just saw a statistic the other day — I wish I could remember it more specifically — but it was something like the number of healthcare administrators over the past decade had gone up by 30-fold, or 10-fold, or 15-fold, some dramatic number, whereas the number of physicians had gone up maybe 5% or something. Normal growth. I'll try to find that statistic and put it in the show notes.
[39:36] Obviously that money has to come from somewhere. For every dollar spent on healthcare, a huge amount is going to insurance companies and administrators, not actual care.

[39:44] Dr. Ilene Ruhoy: And what people have to recognize is that the only billable people in the healthcare system are doctors. It's on our backs that we pay the administrators and get the insurance companies their money. That's not fair, because we're the ones who are micromanaged — by hospital administrators, by RVUs, by how many patients you're seeing and what you're ordering or not ordering. It's just so upside down.

[40:21] Dr. Linda Bluestein: Yeah. And that's why so many practices have been absorbed and bought out by hospitals — the overhead became so high. That's what happened with my husband's group. When he first started, their overhead was really low — basically one administrator for every doctor, so like 3 doctors and 3 administrators. By the time he left, there were like 7 doctors and 45 administrators.

[40:50] Dr. Ilene Ruhoy: Oh my God.

[40:51] Dr. Linda Bluestein: Yeah, because there's a person who has to get the prior auth for the CT scan or the MRI, and so on. Their overhead went from about 20% to 60% over the course of his career. That just wasn't sustainable.

[41:15] Dr. Ilene Ruhoy: Nope, it's not. And it's also what's behind a lot of the mergers happening among hospital systems. Some of those mergers are not in the patient's best interest. My husband's group was bought by a very religious hospital organization, and they did away with gender-affirming care, transition medicine, abortion care — whatever the hospitals were supporting, they did away with all of it. So there's a lot of pain in the community because of that particular merger.
And there's also further economic downfall on the doctors. There are a lot of administrators looking at what the doctors are billing and what they're doing and not doing. Doctors are supposedly an intelligent group — we went through school, we took a million exams — and yet we're not allowed to use our brains, give opinions, or help decide on structure and system. I feel like we're relegated to an exam room and told to see patients all day, every day. I don't understand the misuse of what are presumably not only intelligent people, but caring and compassionate people. Why else did we become doctors?
[42:48] When I graduated college, a lot of my friends — I'm from New York — went to Wall Street and made millions of dollars by the time they were 30. And I was in residency. It's a very different life that you choose. Why did we do this if we're not going to be given the respect and the valor that we deserve?

[43:13] Dr. Linda Bluestein: Yeah. And I think in terms of what's changed over time — I know for sure, seeing this in my husband's practice — when he first started, they valued quality. The hospitals were so happy he was there doing surgery. By the end, they just wanted somebody there seeing patients. They really didn't care about quality anymore. And I know your practice has evolved a lot. I'd love to hear about that.

[43:49] Dr. Ilene Ruhoy: Yeah, my practice has evolved. Some days I feel really badly about it, because I recognize that my choice to not engage with those insurance companies has consequences for patients who don't have disposable income. But there was no other way I could keep my practice alive. I couldn't pay my staff, I couldn't pay my utilities. And so I had to choose not to bill insurance.
[44:13] Over the years, it was clear to me that I made the right decision, because I spend a lot of time with patients — and insurance companies don't reimburse you for extra time spent with patients. So a lot of my time was just non-reimbursed, which is not a good business model. Any business person would tell you that. I actually had business people as patients who would say, "How are you making this work?" And I would say, "I'm not — I'm failing." So I had to make different business decisions.
[44:44] Since that time, I continue to not bill insurance and I continue to offer treatment options without billing insurance for them. It does create a difficult situation. I feel badly about it on a lot of days, especially with patients who I know are struggling and suffering. They will tell me they've saved up for an appointment, which breaks my heart.
I know there will be further changes in my practice in the future, only because I don't know how else to do it. It's because the healthcare system is so broken. I really want to continue doing the work that I'm doing because I have such passion for it. I'm finally happy again in medicine, in neurology, and I don't want to give it up. There are only a few ways to ensure I don't have to give it up, and unfortunately that means cash pay and concierge kinds of services. That's what I'm thinking through right now about my next change of model.

[45:52] Dr. Linda Bluestein: And I was basically in the same situation when I opened my practice. I quickly realized — you do the math — you can't pay for the Wi-Fi and a receptionist and someone to clean the exam rooms. There's a lot of expenses. So yeah, it's really, really challenging.

[46:21] Dr. Ilene Ruhoy: It is challenging. And people don't realize the extraneous expenses. I just renewed my California medical license for $1,200. And then there's all kinds of fees — malpractice insurance, commercial insurance, EMRs.

[46:39] Dr. Linda Bluestein: Oh my gosh. EMRs. Exactly.

[46:50] Dr. Ilene Ruhoy: We're nickel-and-dimed as doctors. We really are. So it's very hard. It's a very hard profession to be in if you want to do it well for patients. You have to make these hard decisions.

[46:50] Dr. Linda Bluestein: Yeah. And especially if you want to treat people with chronic diseases, because that's so different from dealing with a discrete, specific thing.

[47:01] Dr. Ilene Ruhoy: Yeah.

[47:12] Dr. Linda Bluestein: And speaking of things that are more widespread and multisystemic — the role of connective tissue in health. Getting back to that, what has surprised you the most?

[47:23] Dr. Ilene Ruhoy: What has surprised me the most is that without our connective tissue, we have no health. What I learned — and was surprised to learn — is that where our anatomy sits is genetically predetermined. And if your connective tissue is failing to keep it where it needs to be, then nothing is going to work well.
[47:50] We've always learned from physiology that a lot of our body works through cellular signaling. There's an expectation that where the signal is sent out from, it will be delivered at a certain place. But when that connective tissue isn't holding that organ — and therefore those cells — in place, even if it's off by a millimeter, the signal gets there but it's not as loud and not as strong. It doesn't provoke as much post-signaling transmission. Where the membrane receives it, then there are membrane transformations, receptor transformations, and then it goes into the cytoplasm — all of that is somewhat suboptimal because the connective tissue hasn't kept that organ where it needs to be.
[48:53] That was a big learning concept for me, and from there everything fell into place. I realized this is why it's such a multi-systemic, complex, phenotypically varied presentation. And then I started to figure out: what do we need to do? There aren't a whole lot of options for connective tissue, to be honest with you.
[49:22] The holy grail question I always ask myself is: how do I regenerate your connective tissue? Because that's the problem. The meninges are connective tissue. The outer vessel walls are connective tissue. The fascia that holds our muscles is connective tissue. The perineurium that covers the nerves is connective tissue. The fascia that holds our organs in place in our abdomen, pelvic cavities, even our chest cavities — all connective tissue. So how do I fix this connective tissue so that everything stays in place?
[49:55] And it's hard — there's no easy answer. I've dove into a lot of regenerative medicine approaches like peptides. I've also been working with a company called Hope Biosciences that works under an FDA program called Right to Try to use stem cells, because we know that stem cells can regenerate connective tissue. The FDA isn't really clear on how they feel about it, but they have this Right to Try program that Hope Biosciences works under with these complex patients.
[50:25] I'm always trying to think of ways to regenerate connective tissue, or at least heal it. It's inflamed because mast cells are largely aligned within the connective tissue, and if you have mast cell activation disorder, they are very easily triggered and degranulating, causing all this inflammation. At the very least, I try to manage those mast cells to reduce inflammation and therefore reduce the inflammatory burden on the connective tissue. That will allow maybe for some natural healing. With EDS patients, there's already an innate, probably genetic component of connective tissue disorder — that's hard to overcome. But every exposure results in some immune and inflammatory response. We even showed that COVID degrades connective tissue. Mast cells release proteases that target collagen. So what I'm saying is not theoretical — we know this takes place. If somehow we can manage and counteract it, I think we're giving the connective tissue at least a fighting chance.

[51:28] Dr. Linda Bluestein: And what peptides do you tend to recommend most commonly?

[51:38] Dr. Ilene Ruhoy: My favorite is thymosin alpha-1. It's a great immunomodulator. My other favorite is GHK, which is actually used in burn centers because it helps reduce scar formation but also helps lay down collagen in a more architecturally sound manner — more structurally sound, with more integrity. In the past 5 years, I've put almost all of my EDS patients on GHK. It's an injectable, but with little insulin needles so you don't really feel it — it's like the GLP-1 needles, actually. And it really does help the connective tissue.

[52:18] Dr. Linda Bluestein: Very interesting. Would you prescribe both of those in the same patients? Would they sometimes take both, or would you try one first?

[52:26] Dr. Ilene Ruhoy: Definitely both. You can definitely do both. Sometimes, because they're out of pocket — of course, nothing is covered by insurance that actually works —

[52:33] Dr. Linda Bluestein: Right.

[52:33] Dr. Ilene Ruhoy: That's not entirely true — some medications do work and they're covered by insurance.

[52:40] Dr. Linda Bluestein: But a lot of things are not.

[52:41] Dr. Ilene Ruhoy: A lot of things are not, correct. Because of that, sometimes I'll say, let's start with one. I usually start with thymosin alpha-1 because I want to get some immune system control going first. But then I'll quickly add GHK. Sometimes patients can afford both at the same time. They're not super expensive — I would say around $200 a month for each, maybe closer to $300 for one of them. Not crazy expensive, but obviously not affordable for everyone.

[53:16] Dr. Linda Bluestein: Yeah, definitely not. And is that something you need to keep taking, or could you take it for a while and then stop?

[53:23] Dr. Ilene Ruhoy: I do what I refer to as receptor rest. At some point I think the receptors just get saturated, and so you're wasting your money because there's nowhere for it to go. I generally do 3 months on, then 1 month off, then 3 months on, 1 month off. But I made that frequency up, to be honest. Not the receptor rest concept — I made the frequency up. That's where art over science comes in, and I do a lot of art over science in terms of my recommendations and the frequency of certain things, because there isn't a whole lot of evidence to go off of for patients who have been suffering for decades in some cases.
[54:09] I always say things like, I believe this to be true because I've been doing this for years and I've seen so many patients. I know it's not going to be harmful — I still honor my oath, first do no harm. And I believe there's the potential for a beneficial yield. That's when I will recommend it, and then come up with something like 3 months on, 1 month off.

[54:38] Dr. Linda Bluestein: That's super interesting. I personally have not tried either of those. I did try BPC-157 a number of years ago — my husband and I actually both did, we would inject it on each other every night.

[54:51] Dr. Ilene Ruhoy: Oh, that's so cute.

[54:53] Dr. Linda Bluestein: Isn't that romantic? He's coming up a lot this episode. Is BPC-157 something that you sometimes recommend?

[54:58] Dr. Ilene Ruhoy: Thymosin alpha-1 and GHK are my top two. I would say my third is BPC-157. So yeah, I like that one a lot.

[55:18] Dr. Linda Bluestein: Okay. Sounds good. We had quite a few questions from the listeners, and for those who are listening to this episode who also submitted questions and listened to episode 90 — I promise I'm going to try to get through as many of these as possible, but we're going to need to wrap up soon, so we probably won't get through all of them. I'll save them for our next conversation, when we're going to talk about plasmalogens and other topics we haven't covered yet.
[55:50] So, one that I thought was great — and you kind of alluded to this at the beginning: is it better to lean into cognitive dysfunction or fight against it in the moment?

[56:05] Dr. Ilene Ruhoy: I'm not exactly sure what it means to lean in. Lean, fight against it — how would you fight against it, I guess?

[56:13] Dr. Linda Bluestein: I think maybe they're referring to pushing through versus what you said about going into a dark space and taking a little bit of a rest.

[56:23] Dr. Ilene Ruhoy: That — your brain telling you it needs a rest. The brain is the most metabolically active organ of the body. If it's not getting what it needs, it wants to shut down because it cannot generate the kind of energy it needs to function appropriately. And it does not like that.
[56:40] Your brain wants — your entire body wants — to be well. That's the beauty of the resiliency of the human body. It really wants to be well. So you have to listen to your body, and most importantly, listen to your brain. If you're having difficulties with cognition, with processing speed, or latency of response — which is a very common thing I see on exam when patients describe brain fog; I'll ask them a question and you can see their wheels turning before they respond — that is your brain telling you it just needs a break.
I see this with a lot of my TBI patients and post-concussion patients. Frankly, I think long COVID and ME/CFS is likened to a post-concussion syndrome. It's like an infectious trauma to the brain — not a physical trauma, but an infectious one. There is also chemical trauma. I have patients with chemical trauma from certain medications. Fluoroquinolones are a perfect example — a lot of fluoroquinolone toxicities. But there are other classes of drugs that can create trauma to the brain.
[57:44] So the answer to your question is: listen to your brain, take a rest, don't fight through it.

[57:53] Dr. Linda Bluestein: Your rambling is always so educational. And fluoroquinolones — we know those are toxic to connective tissue. I literally remember one night, many years ago, I was very sick and my PCP had ordered levofloxacin for an infection. And I remember in the middle of the night thinking: wait, if this can cause tendon rupture, then what's happening before the tendon rupture? If only a small number of people are getting tendon rupture, what about the other people who are maybe getting something less severe? This was at least 15 to 20 years ago. But I didn't know about the effects on the brain.

[58:40] Dr. Ilene Ruhoy: Yes. And it's funny, because I have a similar story. During that whole time when no one was taking me seriously, someone told me I had a sinus problem — even though I'd never had sinus issues in my life. They did a CT scan of my sinuses because I said I had headaches, thinking maybe it was a sinus problem. They said, "Oh, you have inflammation of your sinuses." I looked at it — there was no inflammation. But regardless, they prescribed me moxifloxacin. I said, "For what?" They said, "For your sinus infection." I said, "I don't see any sinus infection and I have no sinus symptoms. What are you doing?" And they said, "Just take the moxifloxacin."
[59:12] And I was desperate — just like these patients are, right? I was not feeling well and I was only getting worse. So I took the moxifloxacin, and I was so sick. I would take it and within 2 hours I had a high fever, I was nauseous, I was dizzy, I developed rashes that would be gone by the next day. I repeated it 3 days in a row and it was the exact same response. I called the nursing line. They said it can't be the moxifloxacin.

[59:48] Dr. Linda Bluestein: You know, that just drives me crazy. I'm sure you hear this from people all the time — being told "that's not possible."

[59:54] Dr. Ilene Ruhoy: Yeah.

[59:56] Dr. Linda Bluestein: It's like — because really, you know everything that's possible?

[1:00:02] Dr. Ilene Ruhoy: Right. That's such a good point. And I always say to patients when they tell me about a side effect, I say, "That is a little atypical for that drug, but I'm always willing to believe that anybody could react in any way to anything," because we don't understand their bodies or the state their bodies are in — an inflammatory state, an immune dysregulated state. The immune system and the autonomic nervous system — it's so complex. And to act like everything is, for example, POTS — I told you I'm very sacrilegious today — it's so complex. I don't think any one of us can pretend that we absolutely know the answer. I never think I absolutely know the answer. At least I hopefully don't pretend like I do.

[1:00:57] Dr. Linda Bluestein: Stimulants. That's something a lot of people have tried for various cognitive problems or ADHD. Why do you think that oftentimes they're not helpful?

[1:01:10] Dr. Ilene Ruhoy: What's so interesting is that there's a biology group out at Drexel University — shout out to them, and I wish I remembered their names right now, but I don't — who did a study on stimulants and connective tissue. And they found that stimulants were bad for connective tissue. They reached out to me — and I initially thought it was because they knew my daughter attends there, but they had no idea. They just knew that I was considered an expert in EDS, which always sounds funny to me as a neurologist. They said they had done research suggesting that the stimulant class of medications can be detrimental to connective tissue, and I was so intrigued. And then I thought about all my patients who are on stimulants.

[1:02:14] Dr. Linda Bluestein: Yeah. That's fascinating.

[1:02:17] Dr. Ilene Ruhoy: I think the answer lies in there somewhere. We haven't elucidated this enough for me to answer it more definitively. But I think stimulants have to be used in the appropriate setting, and I don't think they're always used in the appropriate setting. I think some of the diagnoses for which they're known to be effective have other physiologic and biological bases in our patient population than what is classic to respond to the stimulant class of medications. Does that make sense?

[1:02:48] Dr. Linda Bluestein: Yeah, that does make sense. And I think the other challenge is that a lot of times people have been on something long enough and they say, "Oh no, that doesn't contribute to my tachycardia." Once you're on them, it's really hard to be willing to try going off. And deprescribing is not something we're taught — we're taught how to prescribe, but not really how to wean off medication.
I had a very interesting conversation about that with our colleague Dr. Heather Tick. She's in Washington State also.

[1:03:28] Dr. Ilene Ruhoy: Oh, she and I should get together.

[1:03:29] Dr. Linda Bluestein: Yeah, absolutely. She does integrative medicine. I can introduce you offline sometime. I just think it can be really difficult, once you start something, to try going without it, because it might seem like it's helping. And if there's a detrimental effect on the connective tissue, you're probably not able to see or appreciate that at the time. So that's really fascinating.

[1:03:57] Dr. Ilene Ruhoy: Yeah, I agree. There are a lot of drugs that sometimes work and sometimes don't. Learning why they work and why they don't would give us lots of clues into caring for these patients. I often say I don't prescribe medication I don't understand the mechanism of action of. That way, if a patient tells me it was helpful, I have insight into what might be helpful or what might be the underlying pathophysiology. And conversely, if it causes side effects, I can think about how that might have happened and what I might want to stay away from in the future. Understanding the whys and why-nots of every medication we use in our patient population is very helpful. It obviously takes a lot of time and effort and documentation, and that's something I definitely need more time to write up.

[1:04:58] Dr. Linda Bluestein: Who has time? And that's another process I feel like the average person doesn't really comprehend — understandably. But the amount of work that goes into publishing a paper. And that's a perfect lead into the paper that you published yesterday, which I was so excited to see — about your practice and Dr. Bolognese's surgical patients, and the breakdown by different condition, and looking at what you call the placebo effect asset in terms of how you looked at the data and what overlapping conditions were present.
[1:05:32] Were there certain things in that study that came as a particular surprise to you?

[1:05:41] Dr. Ilene Ruhoy: To me, no, because I do the clinical work — I've been seeing these patients for a really long time. I think to Dr. Bolognese, because he's just been the surgeon correcting their CCI, it was more of a surprise. But I was the one caring for these patients up until that surgery. I already knew that this cohort had a lot of these diagnoses that I had made or other doctors had made before they came to me. I also follow these patients postoperatively, so I knew how well they were doing.
That's ultimately why we decided we had to write this paper. We designed the survey, we sent it out, we got a lot of information, and we were all very pleasantly surprised by the ultimate analysis. And it's been well received.

[1:06:34] Dr. Linda Bluestein: Really, really fantastic paper. One thing that really stood out to me was when you talked about the affected and unaffected groups. The affected group has a known diagnosis of a connective tissue disorder, and the unaffected group does not have a known diagnosis — we know they may still have one, but they're technically listed as unaffected. And the unaffected group had a higher rate of Chiari 1 malformation, and also higher rates of MALS — median arcuate ligament syndrome. That was really fascinating to me.

[1:07:09] Dr. Ilene Ruhoy: When you think about the role of connective tissue, it does make sense. Milhorat many years ago found that those with hypermobility were at greater risk of Chiari malformation, so that had been shown previously. And in terms of the compression syndrome — MALS is a connective tissue issue, it's a ligament — it made sense, of course.
[1:07:35] It just drives home the importance of evaluating for all of these diagnoses in these patients, because technically and theoretically you need them all addressed for the patient to have a chance at full recovery. That's what we do — we look at every single one of these diagnoses and try to make sure we've identified it, addressed it, managed it, and done what we need to do for it. Patients do well when we've comprehensively covered all of it.

[1:08:08] Dr. Linda Bluestein: Yeah, that's really important, because we know so many people are experiencing so many different things. And that's why when they go to a doctor who only has 5 minutes, it sounds like they're making some of this up — because we're not taught in medical school that you can have that many things wrong with you simultaneously.

[1:08:25] Dr. Ilene Ruhoy: That's right. It's like you have to have one thing — what's your chief complaint?

[1:08:34] Dr. Linda Bluestein: Right. Okay, well, this has been such a fantastic conversation. We end every episode with a hypermobility hack. You've already given us so many great hacks — from peptides to different medications to IVIG and plasmapheresis. But do you have any additional hypermobility hack to share with the listeners?

[1:09:05] Dr. Ilene Ruhoy: That's hard because I did give a lot of my usual stuff. But I think, honestly, I always tell patients that a really good physical therapist who understands a hypermobile body is worth their weight in gold. All the fancy surgeries and medications, all the peptides, plasmapheresis, and immunotherapies — you still need a good physical therapist. Nothing is going to correct the underlying hypermobility permanently. We can reduce the burden and improve the integrity, but a good physical therapist who understands the hypermobile body is truly the cornerstone of therapy — forevermore, frankly. Well into later in life, to keep the joints flexible, to keep them moving, to keep things as aligned and symmetric as possible, and to really be your friend throughout this journey as a hypermobile body.

[1:10:02] Dr. Linda Bluestein: And I'm glad you mentioned flexibility, because I feel like so many people stop stretching completely. And of course you want to do it the right way, but that's what I did. And now I have parts of my body that are so incredibly inflexible, and that's not good either. Things like nerve flossing could be really helpful, done in a very thoughtful and careful way.

[1:10:29] Dr. Ilene Ruhoy: You were a dancer.

[1:10:31] Dr. Linda Bluestein: Oh my gosh, I was so flexible. We would do this thing called heel in the hand — you'd wrap your arm all the way around your foot and put your leg out like that, no problem. Doing the splits every which way. But now I'm so not flexible, because I was having so many problems when I had my Tarlov cyst, and before my surgery I had so much pain in my hamstrings. I was basically told not to stretch. And because it hurt, my brain was sending danger signals. So I didn't stretch my hamstrings for so long that now my posterior chain is very stiff, which is not good.

[1:11:18] Dr. Ilene Ruhoy: No, it's not good. You should work on that with a good physical therapist.

[1:11:22] Dr. Linda Bluestein: Yeah, I do have one that I see regularly — she was on the show recently. I'm continuing to work on it. I also do red light therapy.

[1:11:30] Dr. Ilene Ruhoy: I love red light therapy. The COX enzyme of the electron transport chain is a photoreceptor — it's very responsive to things like red light therapy, and it helps mitochondrial function.

[1:11:45] Dr. Linda Bluestein: Wonderful. Do you have a favorite red light device?

[1:11:48] Dr. Ilene Ruhoy: I do, but it's like $150,000. I don't own it — don't get me wrong. But when you look at the parameters and how it works and the technology itself, it's really amazing. I'll send you the link. You can buy it.

[1:12:05] Dr. Linda Bluestein: Yeah, and then you'll come to me and use it.

[1:12:05] Dr. Ilene Ruhoy: Exactly.

[1:18:02] Dr. Linda Bluestein: I just have a spare $150K in my back pocket. And there are places where you can go, and there are also things you can purchase at lower price points. What's the difference in quality between something like that and something more consumer-accessible?

[1:18:02] Dr. Ilene Ruhoy: I don't want to name brands because I don't endorse brands. But I do think there are low-quality ones and high-quality ones, and I often wonder whether it's even worth a few hundred dollars for a low-quality one that a lot of my patients are buying off the internet. But I know that red light therapy as a treatment modality can be very effective.

[1:18:02] Dr. Linda Bluestein: Okay, wonderful. Before we go, I want to thank you so much for joining me again. This is technically the third time I've interviewed you, which is such a treat. I'm so fortunate. I'll make sure to link all of those other episodes in the show notes. And I also want to ask — what projects are you currently working on?

[1:18:02] Dr. Ilene Ruhoy: I have a couple of projects. I'm doing a muscle biopsy study for electron transport chain abnormalities in ME/CFS and long COVID patients — that's exciting for me. I think I may have mentioned that in a previous episode.
I'm also working on a masterclass — an educational course, sort of a deep dive on neuro-EDS. A couple of people approached me to do this, so I'm excited. And I'm writing a paper on neuro-EDS as well, so they go hand in hand. Otherwise, I'm just working.

[1:18:02] Dr. Linda Bluestein: And for the course, who is the intended audience?

[1:18:02] Dr. Ilene Ruhoy: Patients primarily. Though I would love doctors too. David — Dr. Kaufman — and I have a podcast called Unraveled: Understanding Complex Illness. We recently moved to YouTube from Patreon. Our goal was always to educate, and we had hoped to get a lot more physicians as subscribers when we were on Patreon. We have a few, but not as many as we had hoped. We have a lot of patients who are supporters, and we love and are grateful for them. But our goal is to help patients by educating doctors, so that patients are better understood.
[1:18:02] We moved to YouTube in hopes of reaching more physicians, and we actually do have quite a few more subscribers now than we did on Patreon. So we're keeping our fingers crossed. And I think Dr. Kaufman and I are going to be on your podcast together sometime in the future.

[1:18:02] Dr. Linda Bluestein: Yes, yes, yes. Wonderful. Actually, we did a pretty big survey recently and found that 20% of the listeners of this podcast — at least in this survey — are healthcare professionals.

[1:18:02] Dr. Ilene Ruhoy: Oh wow, that's a great number.

[1:18:02] Dr. Linda Bluestein: Yeah, it's really great. While I love educating patients — and that's so important — we know that if you can educate a physician and raise their awareness, they can provide better quality of care. There are some really great programs out there, like the EDS ECHO program, but most physicians are so busy they're not going to take that much time out of their schedule to learn about something that, at least at the outset, they don't think affects that many of their patients.

[1:18:02] Dr. Ilene Ruhoy: Right. It's like that old saying — if you give a man a fish, he eats for a day; if you teach him to fish, he eats for a lifetime. We want to help patients by educating doctors, so that when patients see that one doctor, that doctor has a better understanding of what might be going on and where to start. That's our goal.

[1:18:02] Dr. Linda Bluestein: Yeah. And hopefully they won't be gaslighting people anymore, and will be much more empathetic. Even if they're within the insurance system and can't take a lot of time, maybe they can have the patient come back for another visit.

[1:18:02] Dr. Ilene Ruhoy: Exactly.

[1:18:02] Dr. Linda Bluestein: Where can we find you online?

[1:18:02] Dr. Ilene Ruhoy: I have a very mediocre social media presence. My new practice is called Anthurium — A-N-T-H-U-R-I-U-M — dot org. It's a perennial plant with a heart-shaped flower, very pretty, and it always sort of resonated with me. So they can find my practice there.
I'm on Bluesky, though I don't remember my exact handle — it's something with Ruhoy. And I'm still on Twitter at @RuhoyMD. I'm on Instagram, which I actually sort of like — that's Ilene Ruhoy, MD, PhD. And I have a TikTok account. I know, it's almost embarrassing, but it's actually fun and I enjoy it. People ask me questions and I love to educate. That's also Ilene Ruhoy, MD, PhD.
[1:18:12] Come follow me everywhere, because otherwise I'm really considering leaving these accounts. If it wasn't for the book coming out — my publisher really wants me to use those accounts because I do have followers — I would probably consider stepping back. My public persona always makes me uncomfortable. I always feel, "Oh, that's so cringe."

[1:18:37] Dr. Linda Bluestein: It's hard, because we both went to medical school and through residency because we wanted to take care of patients, not to be TikTok famous.

[1:18:48] Dr. Ilene Ruhoy: Exactly. I will post a video and then not look at it for weeks because I don't want to know what people are saying or how many likes it got. So go follow me so that I feel like it's worth it.

[1:19:03] Dr. Linda Bluestein: Yeah, absolutely. We will make sure to link all of that in the show notes so people can find your website, your YouTube channel, and all those other places. Because it's a lot of work. And it's wonderful to hear nice things from people — we're human too. Sometimes I'll get 20 wonderful comments and then one that's not as nice, and I find myself hyper-focusing on that one. Which is bad, because there were all these other wonderful people who said such nice things and appreciate work that we do that doesn't bring in money and in fact costs money for us to do. This podcast is free to the listener but is a labor of love for sure.

[1:19:54] Dr. Ilene Ruhoy: That absolutely happens to me, which is why I don't look at my posts for weeks at a time. I don't want to see someone who might not have loved my video, because I am very sensitive in that regard.

[1:20:06] Dr. Linda Bluestein: Oh, I'm glad it's not just me. Well, I just love chatting with you. I'm going to have to schedule more podcast interviews just so we can hang out. And everyone is going to love hearing anything you have to talk about. Thank you so much. I know you are crazy busy and have a lot going on, and we'll definitely have to have you back when the book is out so we can talk about it more specifically.

[1:20:33] Dr. Ilene Ruhoy: I would love that. So that people can read it first and then know what it's about, and I can talk more specifically about it.

[1:20:39] Dr. Linda Bluestein: And we can plan that episode to answer more listener questions, because I do feel badly that we ran out of time to address all of them. But I also want to be respectful of your time.

[1:20:56] Dr. Ilene Ruhoy: I appreciate that. I do have a transcranial Doppler to do right now for my patient.

[1:21:01] Dr. Linda Bluestein: Oh, I really need to let you go then.

[1:21:04] Dr. Ilene Ruhoy: I love answering listener questions. In fact, David knows that I get very upset during our live sessions when we can't cover all the questions that come in. So I really do want your listeners to know that the next time you have me on — if you'll have me — I will answer all the questions.

[1:21:20] Dr. Linda Bluestein: Okay. So we'll make that episode a Q&A, an AMA kind of thing. Well, thank you again so very much. It was so great to chat with you, and I really appreciate you taking the time.

[1:21:32] Dr. Ilene Ruhoy: Of course. Thanks for inviting me, and it was great talking to you.

[1:21:38] Dr. Linda Bluestein: Well, that was so much fun talking with my very dear friend and colleague, Dr. Ilene Ruhoy, and I hope you enjoyed that as much as I did. Thank you so much for listening to this week's episode of the Bendy Bodies with Hypermobility MD Podcast. You can really help us spread the word about joint hypermobility and related conditions by leaving a review and sharing the podcast. This really helps support the show.
[1:22:01] If you'd like to meet with me one-on-one, you can check out the available options on the services page of my website at hypermobilitymd.com. You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, and LinkedIn at Hypermobility MD. You can find Human Content, my producing team, at Human Content Pods on TikTok and Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast.
[1:22:25] To learn about the Bendy Bodies Program disclaimer and ethics policy, submission verification and licensing terms, and HIPAA release terms, or to reach out with any questions, please visit bendybodiespodcast.com. Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.