Decoding Brain Fog: Expert Insights with Ilene Ruhoy, MD, PhD

[00:35] Dr. Linda Bluestein: Welcome back, every bendy body. This is the Bendy Bodies Podcast, and I'm your host and founder, Dr. Linda Bluestein, the Hypermobility MD. This is going to be a great episode, so be sure to stick around until the very end so you don't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice.
[01:01] Wow, y'all had so many great questions about brain fog, so we are very fortunate to have back with us today Dr. Ilene Ruhoy. You may remember Dr. Ruhoy from way back in our first season, episode 13, Healing the Brain Holistically. So definitely check out that conversation as well, which will be linked in the show notes.
[01:25] Dr. Ruhoy is a board-certified neurologist and earned her PhD in environmental toxicology at the University of Nevada, working directly with the EPA on her dissertation topic of pharmaceutical residues in the water. Dr. Ruhoy also completed a fellowship in integrative medicine with Dr. Andrew Weil at the University of Arizona. Her interests include connective tissue disorders such as EDS, autoimmune neurological disorders, neuromuscular disorders, intracranial vascular and pressure disorders, infection-associated neurological conditions such as Long COVID, ME/CFS, and PANS/PANDAS, traumatic and inflammatory brain injury, mitochondrial disease, neurodegeneration, and exposure illness. In addition to her private practice in Seattle, Dr. Ruhoy also serves as the medical director of the Chiari EDS Center at Mount Sinai South and is currently a co-editor of the special issue of neurology and connective tissue for Frontiers in Neurology. Dr. Ruhoy, hello and welcome back to Bendy Bodies.

[02:25] Ilene Ruhoy, MD, PhD: Hello, I'm so happy to be here again.

[02:32] Dr. Linda Bluestein: Okay, Dr. Ruhoy, we're going to dig into brain fog. It's such an interesting term and definitely means different things to different people. How would you define brain fog?

[02:40] Ilene Ruhoy, MD, PhD: Brain fog is a patient's experience, and usually when I ask further questions regarding their experience of brain fog, you hear a lot of: they feel like they're thinking through a fog, through a sludge, that their thinking is much slower than they're used to. They have a hard time learning new ideas, storing new memories, recalling words. They feel their processing time is much slower. They have a difficult time focusing and keeping attention on a single object, specifically with reading a book, for example. They'll say that they have to read a paragraph over and over again and they still don't comprehend what they're reading. They definitely have a difficult time watching any television show or keeping track of a conversation.
[03:30] And oftentimes, when I'm speaking with them, if they have a partner that's available for the appointment, I'll ask the partner questions and the partner will agree that oftentimes they have to repeat things that were already said to the patient previously, because the patient doesn't remember the conversation or doesn't remember the task that was discussed. So there's a lot of just difficulty in retaining and recalling information, and that is often what patients experience as brain fog.
Cognitively, interestingly — and I do a lot of cognitive testing — they actually score fairly okay. But I think what's also important to point out is that some of these patients say that they were very high functioning previously and that they believe they would have scored even higher prior to the onset of brain fog. But cognitively, they appear to be intact in terms of frank cognition. So it's not true cognitive impairment. There definitely seems to be just an inflammatory component of trying to process information and retain that information.

[04:37] Dr. Linda Bluestein: Okay. And when you said the word inflammatory, we're definitely going to have to get into that in more detail as we go on. But I want to make sure that we kind of hit some of the basics first. So who would you say is most at risk of brain fog or this type of cognitive dysfunction?

[04:56] Ilene Ruhoy, MD, PhD: It definitely seems to be prevalent in those with fatiguing illnesses that are thought to be post-infectious or para-infectious. Obviously, Long COVID is the one that is much more on our radar these days. But also ME/CFS has had a lot of concern with brain fog and cognitive difficulties. As I said, I don't call it impairment per se, but definitely cognitive difficulties.
[05:16] I should also add that along with the brain fog, there's a change of mood, and sometimes changes of behavior. That's another thing that I ask the partners about, or sometimes other family members such as parents or children. There are mood disorders that are associated, things like dysthymia or anhedonia, where things that used to bring the patient joy no longer bring them joy. And it seems to go hand in hand with the brain fog experience. So I think that's another component of it.
[05:52] There does seem to be an inflammatory component to it because the history often, if not always, includes an infectious disease. Sometimes it includes recurrent physical traumas like TBIs, concussions, or even whiplash. So I think of it as a sort of neuroinflammatory response. And if you think about classic post-infectious encephalopathies, as we call them — in the pediatric world, of course, there's PANDAS and PANS — this is well known to be post-infectious, where the child was neurotypical on a Tuesday and then woke up on a Wednesday with all kinds of symptoms and changes of mood and behavior. It's very much, which is why it's called neuropsychiatric in the name itself, because there are behavioral changes.
[06:44] And we see this in adults too, though not as obvious. I think adults have more ways of trying to manage and curtail some behaviors and mood manifestations than children do. Children have much more of an emotional volatility that they just can't control. Adults are better at controlling it, but there's still a clear change of mood, affect, energy state, and sometimes behaviors. So it very much reminds me of these more classic — and I should say better understood, though still controversial, of course — neuroinflammatory disorders that affect the brain.

[07:28] Dr. Linda Bluestein: That's really interesting. Would you say that there are some people who would have the same infection as another person and are impacted differently? Because obviously throughout life we all have various different exposures to toxins and infections, but we don't all end up with these problems.

[07:47] Ilene Ruhoy, MD, PhD: 100%. One of the things that we're trying to understand better is who's at risk and why. I mean, we're exposed to viruses every day. Some are so ubiquitous that by the time we're all of a certain age, we've all been exposed to more than one virus. So why do some people develop these chronic diseases? And we don't really have the answer to that. Likely a genetic variant — we haven't identified it. I'm not sure that there's a ton of robust research going on to try to stratify risk in this regard. There should be, because it might lead to perhaps more aggressive treatment at the onset of the infection itself.
[08:29] Just learning that MS has some of its origins in infection makes me think: what would we do when someone develops mononucleosis at age 19? That's a very common part of patients' history, not only with MS, but also with ME/CFS. And I'm not saying I have an answer — we don't, in general, aggressively treat viral infections. Defining aggressive treatment for a viral infection, I don't know what that would mean either. I'm not infectious disease, so I don't want to pretend I'm an expert in how I would treat it. But I wonder how it would change how we approach a viral infection of any sort if we knew of the risk that is delayed, that is a potential risk for years after that infection.
[09:35] Taking the example of EBV and mononucleosis — it could be 10 or 20 years before you develop an illness that might have been related to that infection. So maybe in those intervening years, there's a change in how we treat our health, how we minimize exposures, how we treat exposures. Our environment just continues to get dirtier and dirtier, and it's terrifying, frankly. So maybe there are some intervening things that we can do in the meantime, but most importantly, we have to understand who really is at risk and why.

[10:11] Dr. Linda Bluestein: Right, exactly. Because there are so many young people being robbed of their entire productive adulthood. You and I have both taken care of so many young people — it's just tragic.

[10:24] Ilene Ruhoy, MD, PhD: It is tragic.

[10:25] Dr. Linda Bluestein: Yeah. So how can patients figure out what might be contributing to their cognitive problems?

[10:34] Ilene Ruhoy, MD, PhD: I think the history holds the answer, right? What have you been exposed to? What has your health been like up until the point when you started experiencing the brain fog? Usually there's a whole history behind it, and there are oftentimes points along the way where you recognize that something is happening within the brain. And then it just progressively gets worse to where you can no longer deny it.
[11:04] I mean, we all have days where we're feeling foggy and not thinking all that clearly — maybe you had a bad night's sleep, or ate some really inflammatory foods, or had a particularly stressful day. There are lots of reasons why we can all feel like our brain's not working well. But in chronic disease, those bad days get progressively more and more frequent, until that becomes the norm. And then it just gets progressively worse.
[12:06] So in their history, patients have to recognize what exposures they may have had. That's where patients will go on different paths — they'll test for mold, or they'll have a complete infectious workup for viruses and certain bacteria and tick-borne illnesses. A lot of doctors will do that complete, comprehensive infectious workup. They'll also get workups for different inflammatory markers, and it might even include imaging — for example, a PET scan, which might show altered metabolism, or volumetric studies, which might show markers of mast cell activation. There could be a workup with regards to immune dysregulation, so you can see how your immune response is working and whether it's been dampened, or whether autoimmunity is starting to develop, which is often the case with progressive and chronic brain fog.
We do find autoantibodies. Autoimmune encephalopathy is a real entity — we see it in neurology all the time. There are well-described and well-documented autoantibodies associated with what's sometimes called limbic encephalitis, often called autoimmune encephalitis or autoimmune encephalopathy, and they have classic types of neurological symptoms. The complex part of this is that patients with brain fog and fatiguing illnesses don't necessarily present with the classic neurological symptoms of those well-known autoantibodies — things like classic seizures or altered mental status. And as I said, they generally perform okay on cognitive studies. So it does make matters complicated when they seek care.
[13:56] The onus really becomes upon the patient to try to identify what has contributed to their brain fog. It is most often some infectious exposure or some other environmental contaminant or toxicant exposure, of which there are many. But the question is: what do you do about it?
[14:25] I treat it as an autoimmune encephalopathy. A lot of the symptoms that patients describe to me — while they're not classic seizures, not generalized tonic-clonic, not focal seizures per se — there are more atypical types of seizure disorders that are well known, things like audiogenic seizures. Seizures can actually fool you. Sometimes they manifest as changes of mood. Sometimes, especially in children, you can just have vomiting seizures. They don't have to look like they do in the movies — they're not always a loss of consciousness with rhythmic shaking. They can fool you.
[15:03] So I treat it as an autoimmune encephalopathy, and we do get great response. I think it's because of the immune response to whatever that exposure is, because that's what the immune system does. The innate and the adaptive immune system will work together at some point — first it starts with the innate, which is the first responder, non-selective, fast-acting. But eventually the adaptive immune system joins in, and if it is a chronic exposure, there is eventually some form of immune dysregulation. So I just treat it as an immune response that does not yet know that it can stop and calm down and stop creating further inflammation. And there is improvement for sure — there definitely is improvement when we approach it from an immune perspective.
[15:58] I work with my patients alongside other doctors who are treating the infectious component or the exposure component. I don't do a lot of antimicrobials because it's not in my scope, but I've certainly learned a lot over the years and feel much more well-versed in it. My patients are usually seeing doctors who do focus on that, so it's usually a hand-in-hand kind of treatment plan.
[16:36] Is it a cure? I haven't seen it be a cure. There doesn't seem to be a magic bullet just yet, but that's along the lines of autoimmune encephalopathy anyway — we don't have a cure for it. A lot of these treatments that we do, even in classic conventional neurology, are long-term and usually incomplete or suboptimal. Take MS, right? It's an autoimmune — sorry, I interrupted you.

[17:09] Dr. Linda Bluestein: No, no, that's okay.

[17:11] Ilene Ruhoy, MD, PhD: Take MS — we don't have a cure for that either. We have good drugs that seem to help slow it down and improve symptoms, but we don't have a cure. So the idea that we don't yet know a cure is sort of the way neurology works. We always say in neurology: we have a lot of diagnoses, we have very few treatments. But I think we're learning more and more as we go on, and hopefully eventually we'll have cures for all these diseases.

[17:38] Dr. Linda Bluestein: Oh, definitely. And with EDS, for example, people will say, why bother diagnosing them because there is no cure? It's like, well, we don't have a cure for most things. If we were to use that line, we would all have a lot less work to do. So I'm curious to go back to what you said about volumetrics and mast cell activation syndrome — could you elaborate on that?

[18:04] Ilene Ruhoy, MD, PhD: I do a lot of volumetric studies, which are known as NeuroQuant — basically an MRI but with specific software that measures the volume of different regions of the brain and compares it to normative values based on gender, age, and so on. What I find with a lot of mast cell activation is that the concern, of course, is always that there's going to be lower volume, which can be consistent with atrophy, and which always scares patients. But what I have found when there is significant chronic mast cell activation is that the volume is actually larger.
[18:41] Presumably — and while I've never ordered a brain biopsy on these patients to confirm this — I think the presumption is that because there's so much inflammation, which brings in inflammatory cells and some fluid, it makes the volume appear larger on the imaging study, so that when the measurements are done by the software, the volume is larger than what normative values would state it should be. So it seems to be a marker of inflammation. And brain biopsy studies are obviously not viable — I won't get an IRB to approve it.

[19:18] Dr. Linda Bluestein: No, probably not anytime soon.

[19:21] Ilene Ruhoy, MD, PhD: Right. But that is what I've seen in patients who have had positive labs suggesting mast cell activation. And as you know, Linda, it's very hard to get positive labs with mast cell activation.

[19:33] Dr. Linda Bluestein: Yes, it is.

[19:34] Ilene Ruhoy, MD, PhD: So in the few patients where I've gotten positive labs, they seem to have this higher-than-normal volume on a volumetric study.

[19:42] Dr. Linda Bluestein: So interesting. And could you explain the relationship between cognitive dysfunction and mast cell activation syndrome?

[19:51] Ilene Ruhoy, MD, PhD: There seems to be a definite correlation between mast cell activity and cognitive dysfunction. Mast cells are present in the brain as they are in every part of our body. Interestingly, the brain has unique histamine receptors — H3 receptors, as well as H1 and H2. H3 is not found as ubiquitously as H1 and H2 are. And of course, all the antihistamines that we generally recommend are H1 and H2 blockers. So we don't have a whole lot to counteract H3, though there are one or two medications indicated for narcolepsy that are out there — but hard to get approved for patients because they're brand name and not yet generic.
Histamine is also a neurotransmitter — there are histaminergic functions of the brain. Histamine keeps you awake, which is why antihistamines put you to sleep. With chronic mast cell activation, and it's not only the histamine — there are lots of mediators that come out of mast cells. One of the things I regularly emphasize is that focusing only on histamine when it comes to mast cell activation is, in my opinion, a bit shortsighted. There are so many different mediators, and some of these other mediators can actually do a lot more damage. Speaking of connective tissue and EDS patients, some of those mediators are enzymes that love to break down collagen. So I think there are other mediators that are just as important, if not more important in some clinical circumstances, than histamine.
[21:30] But regardless, the brain has mast cells, it has unique histamine receptors, and mast cell activation releases histamine — which is a neurotransmitter — and releases other inflammatory mediators. So we think it contributes to the inability of the brain to have the transmission it needs for memories, for words, for processing, for focus and attention. It just sends the brain into a state where it doesn't really know how to function appropriately. And so patients sense that lack of mental clarity, that feeling of thinking through a fog — which is why they call it brain fog.

[22:13] Dr. Linda Bluestein: Mm-hmm. And another cause of cognitive dysfunction in our world — in what you might call the triad, the pentad, or the septad — we have these conditions that tend to travel together and are causing a lot of suffering in a lot of people. Another component of that is dysautonomia, and in some cases specifically POTS, postural orthostatic tachycardia syndrome. What's the mechanism of cognitive dysfunction with dysautonomia or specifically POTS?

[22:48] Ilene Ruhoy, MD, PhD: Low blood flow. What's interesting is that at Mount Sinai, we've been doing transcranial Dopplers when we do the invasive cervical traction. And what we're finding is that the majority of patients have low cerebral blood flow, which makes sense with POTS and dysautonomia and the hypovolemic component of it. There just is slow blood flow. The blood doesn't get to the parenchyma — the tissue of the brain — as optimally and as efficiently as it should. And when it has low velocity, it doesn't have as much force for perfusion. So the blood might actually deliver oxygen at some point, albeit at a lower speed, but then it needs force to actually perfuse into the brain tissue. And so it doesn't do that as efficiently.
[23:39] This is a subclinical global hypoxic kind of effect. And that really causes a lot of difficulty in thinking processes, especially when you think about how important oxygen is — the mitochondria need oxygen. Oxidative phosphorylation, as the name implies, needs oxygen. So just the low flow and the low perfusion rate seems to impair the ability of the neuronal cells to really efficiently and effectively and optimally perform their function. That definitely contributes to the brain fog experience.

[24:17] Dr. Linda Bluestein: And it seems like that could be related to the high extraction ratio of the brain, right? With every pass of oxygen, the brain is going to extract much more oxygen than muscle or fat or the kidneys — the kidneys and the heart are also up there — but the brain is number one. That's what I remember from my anesthesia training.

[24:44] Ilene Ruhoy, MD, PhD: Right. The brain is the most metabolically active organ.

[24:46] Dr. Linda Bluestein: Right. Okay.

[24:50] Ilene Ruhoy, MD, PhD: The brain is everything.

[24:51] Dr. Linda Bluestein: It is. Absolutely. And you mentioned craniocervical instability, but I definitely want to talk about upper cervical instability and some of the other things that I'm sure you see at the Chiari EDS Center in New York. Can you explain what that is and how it relates to cognitive problems?

[25:12] Ilene Ruhoy, MD, PhD: Craniocervical instability is when there's an unstable C0-C1-C2 complex — C0 being the skull, and C1-C2 being the first two cervical vertebrae of the cervical spine. It's held together by several different ligaments. When there is a connective tissue compromise, as there is with EDS patients, that complex becomes very unstable. And there are a couple of consequences of that.
[25:38] One is what we refer to as cervical medullary syndrome, which is compression of the lower end of the brainstem. Cervical medullary syndrome is not unique to CCI — if you had a large tumor sitting there, you would still have compression of the brainstem. But it is a very common consequence of CCI. When you have compression of the lower end of the brainstem, you can also potentially have compression of the vessels that feed blood to the brain and drain the brain of blood, as well as compression of the CSF compartments — where CSF flows. When you compress all of that, you alter the dynamics.
[26:00] Compression of the lower end of the brainstem can cause some significant symptoms. The lower end of the brainstem contains not only the lower cranial nerves — 9, 10, 11, and 12 — but also nuclei that are part of the autonomic nervous system, and nuclei that are part of the neuroendocrine axis, because they communicate with the hypothalamus. So the hypothalamus, pituitary, thyroid, adrenal glands — you can find abnormalities along those lines. And with compression of flow, you can not only have brain fog, but also elevated intracranial pressure.
[26:54] What we see is that when you have an unstable C0-C1-C2 complex, the C1 can move around a bit, and C1 has a bony protrusion called a tubercle. Because it moves, that tubercle can sit on the internal jugular vein, which basically abuts this complex. When you compress that jugular vein, you are causing compression of outflow. There's congestion — I always liken it to a highway. If the exit is closed off, everything backs up. Out here in Seattle, it happens all the time. So you have congestion and everything just backs up, and that can cause elevated intracranial pressure.
[27:42] There's an exchange between the fluid compartments of the brain — the arterial system, the venous system, the CSF compartments. That's actually how the glymphatic system works. When you have congestion of one, it can affect the others. And so you get elevated intracranial pressure.
[27:59] It's not the classic IIH — idiopathic intracranial hypertension. I don't like that name anymore, because I don't think it's idiopathic. The classic teaching of IIH always centered on the fear of optic nerve swelling and loss of vision, and if you were to lose your vision from IIH, it was lost forever. So the question was always: is there papilledema? And if so, we have to intervene basically urgently.
[28:30] But this is the kind of elevated intracranial pressure — at least certainly early on, and for a long period of time — that doesn't have significant vision involvement, but it does have the other classic symptoms of IIH, which are debilitating for patients. Things like severe headaches, pulsatile tinnitus, feeling dizzy and lightheaded, even syncope. And because it's related to CCI, there's an overlap of symptoms — things like difficulty swallowing, facial pain, atypical facial pain, intraoral pain, certainly neck pain. And changes of position can sometimes flare symptoms or not — sometimes a change of position can lighten the compression on the jugular vein or improve the craniocervical instability because in a certain position it's in better alignment.
[29:26] So it becomes very complex for patients to try to manage. The more definitive treatment is surgical intervention, which lots of people are rightfully afraid of. So it's something we work very closely with patients on — a comprehensive evaluation to understand what their symptoms are about, and whether there are other potential causes. We try a lot of medical management first before deciding that maybe surgery really is the best option.

[29:58] Dr. Linda Bluestein: Yeah, that's so important because there are obviously complications that can happen or suboptimal outcomes. But sometimes people need to go that route. It's good to try the lower-hanging fruit first. So what about the opposite? If someone has a CSF leak, for example, could that also impair their cognitive function?

[30:20] Ilene Ruhoy, MD, PhD: It definitely can. You have intracranial hypotension, and that can come from two separate reasons, at least in my experience with the EDS population. The dura is very dense connective tissue, and with EDS patients, that connective tissue is of course vulnerable and at risk. You can have a spontaneous tear — sometimes it's after a lumbar puncture or some other intrathecal intervention. But also, if you have chronic, long-standing elevated intracranial pressure, you could easily spring a leak, and that leak is secondarily the result of just the vulnerability of the dura.
[31:03] So you can first have high pressure, then spring a leak, and then have low pressure. And yes, low pressure brings the intracranial pressure down. If it's somewhat chronic — and that duration of time is different from patient to patient — in a long enough period of time of being at low intracranial pressure, you can develop what we refer to as brain sagging or cranial settling, where things just sort of sag down. That definitely contributes to brain fog and cognitive dysfunction. It also puts you at more of a risk of low-lying cerebellar tonsils, which EDS patients are already at risk of, as well as a true Chiari. And brain sagging can compress flow — again, of CSF and of the vessels.
[32:04] There are large vessels, moderate-sized vessels, medium-sized vessels, small vessels, tiny vessels that feed the crevices of the brain. The smaller vessels are very vulnerable, and so they can basically collapse under the weight of brain sagging, but also under the weight of inflammation. And that contributes back to the global subclinical hypoxic state — it definitely contributes to just inefficient oxygen delivery and perfusion.
[32:38] There is something called vascular dementia. While I've already stated that I don't think, at least at this moment in time, that brain fog represents a dementia syndrome in the making — because cognitively these patients seem to be decently intact — vascular dementia on imaging shows evidence of widespread small vessel disease, where these small vessels have basically collapsed and are no longer delivering blood to small pieces of the brain parenchyma. That happens in older people over a lifetime of basically inflammation — which sort of goes to what we're saying, right? Our brains are inflamed, our bodies are inflamed. And so these small vessels bear the burden and collapse under the weight of that. They don't do their job, which is feeding the tiny pieces of our tissue.
[33:46] So while I say that these patients are performing okay on cognitive tests, there is a big fear in the back of my mind that if we don't somehow correct this, we may be heading toward something down the line that's going to be a lot harder to treat and a lot more debilitating — though that's hard to say, because these patients are obviously quite debilitated and their quality of life has really been upended.

[34:17] Dr. Linda Bluestein: As you were talking about low intracranial pressure, I was thinking about people with Tarlov cysts. I had one patient whose entire spine was full of Tarlov cysts — it was unbelievable. That could cause basically a shunting effect, or could that also potentially cause low intracranial pressure?

[34:39] Ilene Ruhoy, MD, PhD: It absolutely does. They are filled with CSF, and the bigger they get, the more fluid they're removing out of the spinal canal. Your system does make more fluid, but the bigger the Tarlov cysts get, they can cause nerve compression as well, because they're perineural sheaths. So it becomes problematic. Tarlov cysts are definitely a source of lowering intracranial pressure.
[35:02] And it's interesting because, as you know, we learned that Tarlov cysts were just incidental findings. You get to a point in medicine where you just start to second-guess everything you thought you knew. And to be honest, it's always nice to talk to other doctors — but it's an uncomfortable place to be in sometimes. Like, did I know anything at some point?

[35:35] Dr. Linda Bluestein: Right, right.

[36:27] Ilene Ruhoy, MD, PhD: Like, what was I taught? It's not a comfortable place to be. But in some respects, it's almost liberating, because now you're free to think about it from a different perspective and see it differently. And when you see enough patients and sort of see clinically the effect of it, you get these epiphanies every day. People have heard me say this, and I say this on my own podcast all the time: I learn from patients every single day. I really do. I love to apply the knowledge that I have as a neurologist to what they're experiencing. You do that enough, you start to put the puzzle pieces together and see it for what it is. That is a rewarding feeling. But it's true that at some point you just start to think: did I know anything? What was I taught? I have to second-guess everything.

[36:34] Dr. Linda Bluestein: Right. I sometimes think that I went through very traditional medical training, and I thought I knew certain things. My mind wasn't closed, but it was more encapsulated.

[36:48] Ilene Ruhoy, MD, PhD: Yeah.

[36:48] Dr. Linda Bluestein: And sometimes I feel like my mind has become so open that everything's falling out.

[36:53] Ilene Ruhoy, MD, PhD: Oh my God, that's actually a perfect way of putting it. It's so true, right? At some point I think: okay, I've got to step back, because now I'm just feeling crazy.

[37:01] Dr. Linda Bluestein: Well, because you start reading — and you have a PhD, which I'm always in awe of. You have such a great combination of training — your PhD in toxicology working with the EPA. Who knew that was going to be so incredibly relevant? Well, I guess you probably did, but the universe had a plan. I always say that. And I had a Tarlov cyst, and back in 2009 when they first discovered it, that's exactly what I was told: oh, it's an incidental finding. And I kept looking at my films and seeing this big marble and thinking, is it really? And eventually had surgery and did much better. So it is challenging sometimes walking that line — you could fall into all these rabbit holes. But I learn from my patients every day too. They're amazing, and fortunately usually pretty patient, understanding that I'm happy to research things and learn along with them. That's what I love about the podcast — I learn from brilliant people like you and then I can apply that in my own clinical practice.

[38:25] Ilene Ruhoy, MD, PhD: I agree with you. I love working with colleagues like yourself. We've known each other for a long time now. I've always learned a lot from you, and I really appreciate you and your work. I've said this to you so many times, but I want your listeners to know how much I appreciate you, because you really do some truly tremendous work — especially for the EDS population. It's incredible.

[38:47] Dr. Linda Bluestein: Well, I appreciate that. As you know, because you have your own podcast and do all of these other things, it takes up a lot of time. But when you get that appreciation and feel like you're making a meaningful difference, it makes it all worth it, right?

[39:04] Ilene Ruhoy, MD, PhD: Oh, for sure.

[39:04] Dr. Linda Bluestein: When you feel like you're making a meaningful difference, that's where you go.

[39:08] Ilene Ruhoy, MD, PhD: I love what I do. I really do. I wish I knew more every single day so that I can help more.

[39:16] Dr. Linda Bluestein: Right.

[39:16] Ilene Ruhoy, MD, PhD: But I feel like as each week goes by, I've learned even just one new thing. And I know I'm going to keep going.

[39:24] Dr. Linda Bluestein: Yeah, that's amazing. And I'm thinking as we're talking — I think we need to break this up into two conversations, because we're really diving more deeply into the causes of cognitive dysfunction and cognitive problems. Maybe we should have the conversation about treatment as a separate conversation, because I feel like—

[39:49] Ilene Ruhoy, MD, PhD: I would love to do that.

[39:50] Dr. Linda Bluestein: Yeah, yeah.

[39:50] Ilene Ruhoy, MD, PhD: I feel like that might be better because I didn't go deep enough into the immune component — the glial cells and their role — which sort of leads me into the treatment plans that I come up with for patients, which is really about the immune system. So we should definitely have a second conversation about that, because there are things that can be done.

[40:12] Dr. Linda Bluestein: Yeah.

[40:12] Ilene Ruhoy, MD, PhD: And it's not all about medication sometimes, and sometimes it is. There are some supplements that I have found to be helpful, but there are also some non-pharmacologic modalities that I think are helpful. So there are lots of things that can be done. I would love to have that conversation, for sure.

[40:27] Dr. Linda Bluestein: I think that sounds like a great plan, because we haven't even talked yet about food and sleep and other environmental factors that contribute, right? And of course, I'm sure there must be medications that also contribute to suboptimal cognitive function. So maybe we can talk a little bit about that, and then we'll come back to talk about different treatment strategies and everything. And I would love to hear more about the immune aspects, because I feel like that's something that very few people really appreciate, and you're such a perfect person to talk to about that. So what should we know about nutrients and cognitive function? That's a small question, right?

[41:13] Ilene Ruhoy, MD, PhD: That's a really big question. Nutrition is super critical for cognition. Food is medicine is a passion of mine, and I'm constantly preaching it — especially to my daughter. I explain to patients that the foods you choose can either be anti-inflammatory or pro-inflammatory. It's really that simple, that black and white.
[41:46] I don't preach what kind of foods people should eat, because I know there's a lot of dialogue out there — especially on the internet — about what the appropriate diet is. I'm vegan, full transparency. I don't insist my patients become vegan. Many of my patients will say they just feel better when they eat animal meat, and I don't argue with them, because they know their bodies better than I do. But regardless, I think everybody's body responds either in an inflammatory or anti-inflammatory manner based on what you consume. Whatever feels good to that body, people should eat.
[42:27] Having said that, I think there are a few rules that apply to everyone: avoid processed foods and avoid sugar — processed sugar and simple sugars. The brain prefers the glucose molecule, but not in the form of donuts and cookies, more in the form of complex carbohydrates, because our body has very intricate biochemical mechanisms to break down complex carbohydrates and deliver the glucose molecule to the brain and other organ systems as it wants to see it. So complex carbohydrates are actually super important. In fact, I think grains have gotten a really bad rap in some circles, and I never really understood why. The body really does appreciate them. It needs them, frankly.
[43:18] And also dairy — dairy is very inflammatory. I have a lot of patients who tell me they can't live without cheese. I think dairy is very inflammatory, and there is a ton of research to support that. So those simple rules are what I ask my patients to follow at least for a period of time, to see how their bodies feel. And many of them do follow them. It's baby steps. I say: increase your consumption of vegetables. We do know that the wide variety of vegetables and fruits have all the phytonutrients that the body — and the brain — needs. You can find them in the plant world.
[44:03] So it's baby steps. Increase the number of dark leafy greens you're eating. I just work with patients — it's like a journey. So it's not only that I treat them medically as a neurologist, but I'm also trying to improve the things that they do on a daily basis in their lives that can only help them, not hurt them. That's how I explain it. Increasing how much kale you consume won't hurt you — it might help you. I've actually been known to give a recipe or two, because I've come up with very palatable ways of consuming these kinds of foods that some people are not used to eating. It's a labor of love, and it's part of what I like to do.
[44:49] To be fair, I don't necessarily do it at the first appointment, because a lot of my patients are really sick and have been suffering for a really long time, and the last thing they want to hear is: eat more salad.

[45:01] Dr. Linda Bluestein: Right.

[45:01] Ilene Ruhoy, MD, PhD: But there does come a point along the way of my journey with a patient where I say, okay, we need to start really improving your nutrition, improving your sleep, improving how you move, improving how you manage stress. So I start working with them on more lifestyle factors somewhere along that path. But yes, nutrition is just — like I said — it's a hobby of mine. I love it.

[45:26] Dr. Linda Bluestein: And I know we talked about that also in episode 13, so people can definitely go listen to that one as well. We're definitely going to have a follow-up conversation — I'm so excited about that. We're going to defer a lot of the questions that people submitted online to the treatment episode, because I think that's where a lot of those questions will fall. So before we wrap up, I would love for you to tell people where they can find you online. And I want people who are watching this on YouTube to be sure to hit the thumbs up if you're finding this video helpful, so other people can find it, because this is such important information from Dr. Ruhoy and I want everyone to know what she's sharing today. So can you let us know where people can find you online?

[46:14] Ilene Ruhoy, MD, PhD: I'm not great at social media, but I do have some accounts. I have an Instagram account, Ilene Ruhoy, MD, PhD. I have a Twitter account, @RuhoyMD, and then I have a TikTok account — believe it or not, thanks to my daughter — and it's Ilene Ruhoy, MD, PhD. That's the name I use for all of them. That's really all I have online. I don't have any fancy websites or anything like that.

[46:42] Dr. Linda Bluestein: Well, that's okay, because we will have links to all of that in the show notes so people will be able to find you. So, you've been listening to the Bendy Bodies with the Hypermobility MD Podcast, and your guest today was the amazing Dr. Ilene Ruhoy. We will be having her back to talk about treatment of cognitive problems. Dr. Ruhoy, thank you so, so much for coming on the Bendy Bodies Podcast today. Your knowledge is just vast, and I am so grateful to you for your incredible generosity.

[47:11] Ilene Ruhoy, MD, PhD: Thank you, Linda. It was really, really nice to be here. I appreciate it, and I look forward to the next conversation, because treatment is super important. And a fun conversation.

[47:20] Dr. Linda Bluestein: Yes, that will be a super fun one. Thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD Podcast. Visit our new website at bendybodyspodcast.com where you can now view guest profiles and show notes with links to products and journal articles. Leave me a comment, sign up for updates, leave a review or a voicemail, and access the podcast on your favorite player, all directly from our website. You may hear your voicemail in a future episode where we answer your question or dive into your gracious feedback.
[47:51] Follow us on Instagram at bendy_bodies. We love seeing your posts and stories. So be a buddy and engage our community by using the hashtag BendyBuddy — that's hashtag B-E-N-D-Y-B-U-D-D-Y. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, Twitter, or LinkedIn at HypermobilityMD. Visit hypermobilitymd.com for information about medical services and one-on-one coaching.
[48:18] This podcast is for general informational purposes only and does not constitute the practice of medicine or other professional healthcare services, including the giving of medical advice. No doctor-patient relationship is formed. Do not disregard or delay obtaining medical advice for any medical condition you have. Opinions shared are those of the guest and do not necessarily represent the views of the host or any particular organization. Sponsorship of the podcast does not necessarily mean an endorsement. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.