Reversing Brain Fog & Inflammation with Dr. Ilene Ruhoy (Ep 132)

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Dr. Linda Bluestein: [00:00:00] 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.

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 lung COVID, ME [00:01:00] CFS, and PANS slash 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. 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. Mass cell activation syndrome, dysautonomia, and the Ehlers Danlos syndrome are hypermobility spectrum disorders, so this is a really important conversation.

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![00:02:00] 

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. I agree. I'm very excited to be here. Thank you for inviting me again. 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 or 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. Yes. 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, or?

I think it 

Dr. Ilene Ruhoy: depends upon the patient. Sometimes it's not synonymous, but sometimes it is. And I often say that brain fog [00:03:00] is a patient experience. So very commonly when patients report brain fog, I will ask them further questions as to what that means. And I. We'll go down the list of even concerns of cognitive impairment kind of 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? So, um, just to sort of make sure that there is. truly no cognitive impairment in sort of 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. So a very sluggish kind of feeling. And most importantly, they feel fatigued from intense cognitive work. So being asked to learn something new or being asked to follow You know, a chapter in a book or a television show, even watching a screen can create a real sense of just, you know, that their brain is just no longer functioning and they have to close their eyes in a dark room and rest.

Dr. Linda Bluestein: And does that seem to help taking a break like that? 

Dr. Ilene Ruhoy: Okay. It does actually. I [00:04:00] mean, it doesn't, it doesn't completely resolve the 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 reoccur, but they will get some respite for sure if they're allowed to just sort of lie in a dark room without any sensory stimuli, um, close their eyes.

I mean, so one of the problems when there is brain fog and any kind of cognitive challenge, uh, is that the brain is very sensitive to sensory stimuli, to external stimuli. So, Things like noise and things like light and sound and, you know, patients can't be in a, in a very crowded room, for example. And if there's a lot of ambient noise, they can't hear the person that's talking to them or they are triggered by the person that's talking to them.

And you just got to do with the person themselves, but rather than not the sound of their voice, you know, and so, um, and if there's a lot of fragrances in the air, I mean, I have patients who tell me they can't go to [00:05:00] malls any longer because the stores have a lot of fragrance. that are sprayed into the air, and so that can be very bothersome to them.

So the brain just becomes very sensitive, very hypersensitive to just sensory stimuli from the environment. 

Dr. Linda Bluestein: That's, that's really interesting. Cause I'm thinking also about our patients that have hyperacusia or, you know, sensitivity to sounds. And, and, and I happen to be one of those people and, and I'm going to share something a little more personal.

My husband's chewing, like there are times where it drives me nuts and it's like. I love him dearly, and he doesn't listen to the podcast, so it's okay to show this, I think. I totally understand. But it's, but it's fascinating because, um, in, there was a French study that looked at, uh, the prevalence of different things in people that had, you know, Conditions that look like Ehlers Danlos syndromes and then they looked at other musculoskeletal clinics and that hyperacusia was one of the things that showed up on that list.

So it's really [00:06:00] interesting. 

Dr. Ilene Ruhoy: I do think that, uh, connect, you know, connective tissue disorders in general are a risk factor for a lot of these things. And so I think it's, you know, it's not surprising to me to learn that a lot of these clinics and other groups that see a lot of patients with particular concerns of like hyperacusia, but, um, Is that they see a lot of connective tissue disorder patients because it does seem to be a risk factor for for these symptoms 

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 really be struggling with severe severe fatigue and With a lot of my patients, I'm finding that their pain has gotten a lot better, but their fatigue really persists.

So, yeah, so I'm really excited to get some ideas from, from you for, uh, for managing that. So, so in terms of medications that can help with cognitive dysfunction, brain fog, fatigue, things like that, what are some things that come to mind? So I [00:07:00] usually 

Dr. Ilene Ruhoy: start with, you know, the usual suspects that I think a lot of doctors do with regards to just mast cell management and, you know, usually my triad that I start most patients on, if not all, um, LDN, ketotepin and cromalin, um, just to stabilize the mast cells.

I, I, I personally, and I, I probably am in the minority of this opinion, but, um, don't think that these symptoms are related to. Or at least not primarily related to a histamine concern. So I don't, I don't really find a whole lot of benefit from the anti histamines in my patient population, which I recognize is skewed, right?

I mean, who's going to see a neurologist, they don't really need to. Um, so it's, that's probably the reason why, but, um, so I do a lot of mass cell stabilization and I do a lot of, uh, immunotherapy kind of approaches because I see this as an immune dysregulation problem, uh, you know, a lot of these illnesses.

are what we consider post infectious illnesses and obviously long COVID and as is ME CFS has long been thought to be a post infectious illness or post [00:08:00] exposure illness, as I like to call it, because it's not only just infection that we're exposed to, but so I don't, while I see a massive, a very strong mast cell component, I don't see it as necessarily a primary histamine problem, um, You know, so in fact, most of the symptoms are, you know, cannot be related to classic histamine kind of responses.

So I find stabilizing the mast cells and regulating the immune system is way more effective than the antihistamine approach. 

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

Dr. Ilene Ruhoy: immunomodulators, and I definitely start with the more broad spectrum as I refer to them, which is IVIG.

Uh, I do a lot of plasmapheresis. And again, because these are, you know, there's a lot of targeted immunotherapies available these days. that inhibitors, the tyrosine kinase inhibitors and so on. Um, and then I like the old guard still because we just know a lot about them, but they, they do suppress the immune system fairly significantly.

And so I try to avoid them for the most part, but I [00:09:00] will go to them if we have to, meaning like the cyclophosphamide, the cell set, the methotrexate, the azathioprine, um, you know, there's so much data on them that you. You know, I think doctors are well armed with what to look for. And in terms of surveillance of labs and even side effects, you know, we've used them for decades now.

Um, but I, you know, the targeted immune therapies, I think, have great promise and I'm finding great use of them when I need to go there. But I really, I really get a lot of traction for patients with IVIG and plasmapheresis. Um, I, I find them to be a lot more, a lot safer with a lot less toxicity concerns and, uh, just an easier to do for, you know, it's not easy in the sense of, you know, insurance approval, of course, but, uh, just easier to just get done for the patient.

Dr. Linda Bluestein: And tell me more about the plasmapheresis, like what, who's a good candidate for that and how does that work in terms of the number of times that you might need to do it and in some of the details of that. So [00:10:00] plasmapheresis, 

Dr. Ilene Ruhoy: aphoresis is sort of an umbrella term and there's lots of different types of machines and 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 we take out the blood. It's centrifuged and it's it's separated and we remove the plasma and we don't return it. So it's not filtered in return. Like some of the other machines will do it. There's no exchange as it used to be.

Oh, it still is called in some scenario, clinical scenarios where it's a plasma exchange. And so you get plasma from like the blood bank and it's, it is an exchange of plasma, but we just do where we remove the plasma and their volume is replaced with the albumin, which is the natural protein of the body and albumin itself has anti inflammatory properties.

So, and then, so we infuse the albumin and. We in the body eventually just makes renews the plasma, um, component. And so what we find is that removing the plasma does a lot of great things. So, as you [00:11:00] probably know, it's an FDA approved treatment for autoimmune diseases. We use it for several different autoimmune neurological disorders.

Myasthenia gravis just being one of them. Um, So it's a, it's a treatment that's well known to remove auto antibodies that circulate in the plasma, but the plasma also has other things that is removed by the centrifugation process, including a lot of the mast cell mediators, a lot of the inflammatory mediators, um, circulating viral RNA.

It removes obviously the autoantibodies. It also removes extracellular ATP, which can happen from mitochondrial failure. And I'm finding more and more that that's a component of the fatigue that a lot of long COVID and me CFS patients will experience. In fact, I do muscle biopsies and I have. basically seen a hundred percent of them be abnormal at this point.

It's too few of an end to say definitively that it's always the case, but it's sort of an exciting development that I think, you know, deserves further looking into. Um, but so when the mitochondria start to fail, the, the ATP is extruded from the cell. And [00:12:00] obviously, as we all know, the powerhouse of the cell mitochondria, but, uh, so intracellular ATP is critical for the functioning of the cell, but.

Extracellular ATP is actually toxic to the cell, so the fact that it, and it's got a very short half life, so it's not like it's accumulating at, you know, crazy amounts, but regardless, it's in the plasma, and so it's being removed along with plasmapheresis, and so I think that's one of the reasons why patients do so well with plasmapheresis.

With regards to how many sessions you need, so first of all, it's not covered by insurance, which is a problem because these are obviously off label indications, despite the fact that it's an FDA approved treatment. Um, so it's not cheap because it's a three hour treatment. It's a big machine, requires a technically competent nurse.

Um, and so it's a, it's an expensive treatment to administer. And so it's an expensive treatment to. get. Um, so it's and it's not covered by insurance. So that's an obstacle that I wish I can fix tomorrow, but I can't. And I'm thinking of ways to do so. But, [00:13:00] um, and then it's it's six treatments is the initial protocol.

So it's two a week for three weeks, basically. And, um, that's sort of the recommended protocol to start the plasma freezes. And then some patients, you know, in six months time feel like their symptoms are recurring. And so they come back for what we refer to as sort of this Maintenance or booster session, which is usually just two and uh, and then, you know, they seem to do well thereafter.

In fact, the half of them don't need that maintenance slash booster session. They seem to just continue to do well. And largely because after those six sessions, um, I. tend to, you know, continue with immunotherapy. So, immunosupport, um, sometimes I'll keep them on IVIG at lower dosages for a period of time.

Um, other times I'll, you know, 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 when they're taken. Because the things that were in the body [00:14:00] floating in the plasma that were presumably causing the problem are no longer present.

And so it seems that it may, it certainly makes IVIG work a lot faster. That I, that I have seen over and over and over again, because I do a lot of IVIG. Uh, and Usually if there's a few sessions, it doesn't have to be six actually, if you're going to do IVIG, if you have a few sessions of plasmapheresis beforehand, the IVIG seems to be a lot more efficacious and work at a lot faster rate.

Oftentimes you have to wait months before you know if it's helpful at all. Um, with plasmapheresis first, then you don't have to necessarily wait months, you usually know within one to two months if IVIG has been helpful. Um, and it's, it's, it's. Generally helpful. So, um, I think it just helps also make medications work better because again, we're just sort of, you know, I hate the word cleansing because it just sort of, you know, there's connotations to that word, but it really, really are cleansing the plasma cleaning the body of the unhealthy plasma products.

Um, and so I think that's a key to initiation of successful [00:15:00] treatment in my opinion. 

Dr. Linda Bluestein: And I. I'm glad you circled back to like, you know, what what happens after the sessions are over because that's what I was thinking as well when when the body it makes more plasma when 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, right?

Just so for people who don't know what plasma is. So, um, and then, uh, in terms of those medications that you mentioned, um, so it's the, the ketataphin and the chromalin and the low dose naltrexone. Um, there's some people probably that with that regimen alone are doing sufficiently better. I take it. 

Dr. Ilene Ruhoy: Oh, yes, absolutely.

Yeah. 

Dr. Linda Bluestein: Yeah. 

Dr. Ilene Ruhoy: Yeah. I mean, it's amazing. You know, some patients really do well with those medications, but some patients and I think largely because of the mast cell activity are very sensitive to these medications. And so, and I know, you know, we've talked about on the mastermind list and that the group that we're both part of, you know, the role of the excipients and that definitely plays a role.

But I have found that Yeah. Um, [00:16:00] that a lot of patients who have had issues with the excipients or the preservatives or the fillers or what may be in the, in the medication itself, or even the supplements that they take, um, that, that is less of a problem after plasmapheresis. So, and I think it's because we're removing a lot of those mess on mediators, and it's important to note that, you know, I think that a lot of those mediator, you know, there's 1200 mediators of those mess.

So, so it's, it's well beyond histamine, but, um, a lot of those mediators serve to just provoke more mess activity. And so I think removing those mediators just sort of gives those mast cells a break, basically, like a rest for a period of time, obviously not, you know, permanently, but for a period of time, and so if, if we can then go in after the plasmapheresis and then further manage those mast cells as well as we can, I think it's giving the patients a fighting chance.

And it's sort of certainly what we see here in the clinic. It is, you know, and so that, that is ultimately our goal, right? Is to sort of just counteract all this inflammatory response that the body is, is, is sort of [00:17:00] encountering that is sort of creating this, this altered physiology that is causing their symptoms.

Dr. Linda Bluestein: Right. And I think so many people are familiar with histamine being one of the mass cell mediators and maybe triptase and maybe some of the, you know, some of the other, um, you know, cytokines or, you know, proteases or things like that. But, um, but not 1200 different things, right? Crazy to say, you know, I mean, you 

Dr. Ilene Ruhoy: can't, you can't test for all 1200.

Right. So that's the problem. And so you can test for a select few, um, and then we get focused on those select for you. And I think, you know, and that, and there's no other way around it, of course, because we haven't developed assays for all the other mediators, you know, so I think that we tend to focus on those select few, um, which sometimes actually works well and in the patient's interest, but oftentimes it doesn't.

Dr. Linda Bluestein: And histamine itself. How does that affect the brain? 

Dr. Ilene Ruhoy: So there are histaminergic neurons and there are H3 receptors that are unique to the central nervous system. Believe it or not. So, you know, I always, [00:18:00] and I, and I, there isn't enough research to say definitively how it affects the brain. We know that the H3 has high affinity for histamine.

We know that, um, those, those receptors can modulate the level of histamine that is released in the brain. And so, um, you know, the antihistamines. We know also lower, lower migraine threshold and lower seizure threshold, right? So I think histamine has a role as it has a protect a neuroprotective role. I know this is sacrilegious

Dr. Linda Bluestein: Wait histamine does something good 

Dr. Ilene Ruhoy: Right, it's not it's not always a foe it can be a friend, you know, and I think that's an important Uh, obviously with mast cell activation syndrome or disorder, you know, histamine can be a big foe, but can certainly be an enemy, right? So, because that's excessive then, right?

That's what we're, but clearly, I mean, mast cells are meant to be our friend, meant to [00:19:00] protect us. So, hence, you know, there's a Good role for histamine, right? So, and I think that's been lost in a lot of the talk about muscle activation syndrome is that what really was the nature's intended role for histamine, right?

And the fact there are histaminergic neurons and there are specific histamine receptors of the brain that are not found elsewhere. There are certainly not counteracted by all of the anti histamines that are on the over the counter market. Please. You know, these days, so there is something more. I think that we should talk about and we should explore and we should research.

And so, and I often think about all of the unopposed histamine floating around because everyone's on the H1 H2 blockers, you know, so I often wonder what is that doing? And those H3 has, they have such high affinity for histamine that they just are gobbling it up. And so, you know, how is it changing the function of those receptors, and how is it changing the function of histamine in the brain, and you know, and why are there so many neurologic manifestations, for example, of EDS patients with [00:20:00] MCAS, you know, and so I think that the answer lies within that, and I have yet to know a definitive answer, but I plan on answering that.

Figuring it out, 

Dr. Linda Bluestein: if anyone's going to, 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 a way to, uh, we don't have any medications yet for H3. And well, there are some 

Dr. Ilene Ruhoy: medications actually. Um, one is not available in this country. It's a, it's beta histine or something like that.

Um, but then there's also Wickex pitosalant, which is an H three inverse agonist. So it does work on the H three, but it's got a different kind of receptor property. Um, and I've actually tried to use it for my patient population. I cannot, it's, it's actually indicated for narcolepsy. I can not get it approved if there isn't a diagnosis.

of narcolepsy. And the few times that a patient paid out of pocket for it, um, one, it's expensive. But two, [00:21:00] I didn't see a great response enough for me to feel like it was worth worthy of the price that they were paying kind of thing. So, and to be fair, I don't think I let them try it long enough when I think about the physiology, but I, you know, I'm, I'm definitely considering sort of Revisiting that that question.

Dr. Linda Bluestein: Okay. And speaking of medications and masterminds, we, we, we get into such interesting conversations in there sometimes. And we've There's so much more talk nowadays about the GLP 1, uh, receptor agonist, right? Like semi glutide, which goes by with Jovi or Zempic. And I read someplace that that could be helpful for intracranial hypertension.

Dr. Ilene Ruhoy: Yeah. 

Dr. Linda Bluestein: And, uh, do you have any thoughts about That class of medications, of course, you know, I think somebody shared today something about it. It can help with 60 different conditions, but also can make these 19 conditions worse was that was the title of the article. So, so, of course, we don't have time to go into all of [00:22:00] that.

And I didn't I didn't, I didn't read it today, so I don't know, and I didn't, I didn't read through the whole article, but I, I thought that was really, um, you know, really interesting. So any thoughts, though, about those medications, because I know intracranial hypertension or high pressure inside the head is definitely something that you see in your patients as well, right?

High and low. 

Dr. Ilene Ruhoy: Yes. And to be fair, I haven't used the GLP ones to treat that just yet, but I will say that, um, I've used GLP ones for mass activation. I've used it for fatigue. I think there's something to the glucose regulation, the glucose metabolism regulation of the glucagon like peptides, that really do seem to help a lot of patients symptoms.

And then I think about how that even speaks to the mitochondria, right? If we think about glucose and its regulation, and how it's fed to the mitochondria, which loves that glucose molecule for the electron transport chain activity. Um, Then, you know, I think that there's a [00:23:00] connection there. It's just interesting to me that it has so many great properties, yet we don't talk about, you know, how mitochondria in every cell, right, of every organ.

And so, and it's interesting that it might treat elevated cranial pressure, which, like I said, I haven't tried for, but I'm certainly willing to try it because a lot of my patients have refractory intracranial hypertension and and. And don't tolerate the classic meds like acetazolamide or even because, you know, it's a self a drug.

And so then you can't even do the topiramate, um, you, and, you know, sometimes I've been going to zonisamide for those patients, which they tend to tolerate a little bit better if they don't tolerate the acetazolamide. But it's not nearly as effective. Um, so I've been trying different things. So yeah, I'm going to try the GLP once now.

Dr. Linda Bluestein: Yeah, that's just something that I, that I came across the other day and in terms of medications that medications and or supplements that can make cognitive problems. Or and or brain fog worse. Are there certain things that come to mind? [00:24:00] So I'm not a big fan of supplements. 

Dr. Ilene Ruhoy: And I think everyone knows this about me.

I think, you know, I think my patients are just too sick to waste their money on supplements. It's just 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 support this momentum and let's add some of these supplements.

Um, but And early on, initially, I don't, I don't think it's useful. And in fact, when patients come to me with a list of the supplements they're taking, I usually say I crossed them across most of them off. Um, I think that there's a couple of them having said all that, there's a couple of them that I'm a big fan of.

I like the quercetin and I like the luteolin for the mast cells. I think that they're very effective. I like things like palmitoylethanolamide, otherwise known as PEA, which is really helps. pain. Um, it really helps inflammation. I like, um, NAC, N L C L, uh, N L C L cysteine. Um, it's [00:25:00] a precursor of glutathione, which is really what I like, but it's glutathione itself, unless it's liposomal, though I'm not, still not sure, but it's not that bioavailable.

Um, so N N A C is a precursor of glutathione, so I like that. Um, and so other than that, I mean, to be honest, and magnesium, I think we're all magnesium deficient. So I think those are the only supplements that I would support early on, early on in treatment plans. I don't think I think supplements are a waste of money for the most part.

I'm going to say a lot of sacrilegious things these days. 

Dr. Linda Bluestein: That's okay. I love it. I think it's very important because of course there are. It's just become the Wild West, right, you know, it is and it's so frustrating because I'm sure you get this to you have people coming in and they've they've gone so many different places and they've in some cases tried some 

Dr. Ilene Ruhoy: really crazy things, crazy things.

I have to look stuff up. Half the time, you know, they'll say, what do you think about this, that [00:26:00] this, that I was, I was told to do this. What do you think? And I have to Google it. I'm like, I don't know. No, it is true. It is like the Wild West is a perfect way of describing it. And it, and it scares me for these patients, you know, because there's the potential of making things worse for sure.

Right. Obviously, you don't want that to happen to them. So you try to make, you know, reasonable decisions, you know, um, and you also try not to make them feel badly that they've been doing this for so long. Right. I think for me, you know, I'm like a bleeding heart. Like I, I always feel badly about everything.

Like, Oh, I'm sorry. I'm sorry. So, you know, I tried very hard to say like, listen, I don't think this has been harming you. Right. Um, but I think it's a waste of your money and I think it's helping, you know, so, but it is the wild west and that's a little bit scary to me and those things aren't, aren't even, um, regulated.

So there was a study a long time ago and I have to pull it out, but, um, where they took a bottle of the same [00:27:00] supplement and they put it through like a, like a spectroscopy machine. Um, and they found that every capsule had a different amount of the compounds that was labeled outside the body. In fact, some of the capsules had none of it.

Oh, wow. So you don't really even know what you're buying sometimes. And, you know, so you have to go with well, you know, respected brands and that can take time for people to vet out like what is their, you know, extraction technology and their methodology. I mean, way back when, long time ago, I took a course in herbal formulations just to learn more because I was really, I, as you know, I did a whole integrated medicine fellowship and I was really into you.

using plants as medicine. And I really am into herbal formulations and I like a lot of them. Um, but I, but part of the course is that we went to like where they make these formulations, these tinctures. And so I learned a lot about extraction technology, which is why I say those terms. Like they're nothing to me, right?

But so I learned a lot about it. And while I don't remember [00:28:00] a lot of the details, cause it was a long time ago, but, um, it, it did make me realize that the methodology does matter. Right. But I mean, obviously in science and medicine, we know that and that's why in papers, the methodology is off. It has to be included, right?

So because it does matter. It really does matter. So anyway, that's what I, that's what I think it is. 

Dr. Linda Bluestein: Yeah. And I feel like, you know, people with the triad or the pentad or, you know, whatever, whatever number you want to add, whatever, whatever you want to include in terms of these overlapping conditions. Um, it.

They're such a vulnerable group because they're, you know, desperate for help. And there there's such a poor match for our current medical culture where you're in and out of the appointment in five minutes. You're of course, I shouldn't, you're, you're in and out of the appointment and longer than five minutes, but you're with the doctor for about five minutes, probably.

And you have way too many concerns to really get those addressed well. So then you [00:29:00] hear about these other things and. They probably seem quite attractive and a lot of them are very good. A lot of the charlatans are very good at, you know, promising cures and, you know, yeah, it's really, really tough.

Speaking of, I read something recently about plasmologen. Are you familiar with that? Is that 

Dr. Ilene Ruhoy: I, so lots of people have asked me about plasmologens and I did a quick look and to be honest, I don't yet have a formal opinion. I, it's one of, I have this long list. So my book is like list of things that I have to do deep dives on just because I want to be sure that I guide patients appropriately.

Um, it's on my list. 

Dr. Linda Bluestein: Okay, sounds good. That sounds like another episode. We should do an episode on plasmologans. That would be great. 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.

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Okay. We're back with Dr. Eileen Ruhoi, who is a incredible neurologist and environmental toxicologist. She had her PhD that, uh, that she got [00:31:00] in environmental toxicology. And she has recently written a book, which I am so eager to hear more about. Um, 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, and those kinds of things.

Dr. Ilene Ruhoy: Yeah, I'm real excited. So it's called invisible no more. Um, and, uh, it, it does tackle like long COVID ME CFS and all the SEPTAD diagnoses as best as it can. It also, it, it's a real exciting project for me. It was actually, it's my first book. I've never authored a book myself. Um, and, um, it's. It took a long time to write.

So a lot of it was written over two years ago, believe it or not. So part of me worries about how even relevant some of what I say in it is, but I think there's still relevance regardless because chronic illness is chronic illness. And it comes out June 17th, 2025, though it is available for pre order right now.

And, um, I, it starts with my story, which, you know, I was a patient 10 years [00:32:00] ago and no one would listen to me. And I went to lots of doctors because I wasn't feeling well and I couldn't figure out what was wrong and I went to people that I knew who knew me and I thought that they would take me seriously, but I was wrong.

And, uh, you know, in the end they saw me first as female and second as a neurologist. And so, um. They, I, yeah, nobody took me seriously and I wanted, I just needed an MRI and no one would order it for me because, um, yeah, they didn't want to feed into my hysteria and they told me that I knew too much, that I was stressed out, that I was anxious, but I missed my family, you know, and I always often wonder if they would have said that to a man.

But, um, uh, but I, so I spent almost a year suffering and things just kept getting worse. So, and my neuro exam was normal. I mean, it's, you know, unfortunately, unfortunately the diagnosis itself was different and easy to find, which I'll get to, but it was the same story where my exam was normal. My labs were normal, you know, and so, but symptoms just getting [00:33:00] kept getting worse and no one was taking me seriously.

And so, um, finally I just. I got to a point where I couldn't get out of bed in the morning, and so I went to an internist, and I just cried, and I said, please order me an MRI, and her words were, you know, when a neurologist asks for an MRI of the brain, you order an MRI of the brain, and so she did, and then 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, and that's sort of where it all began, but I'm so angry because that almost year that I wasted, Trying to get someone to believe me, um, really did have consequences.

And that's sort of what I go into in the book, but, um, and, uh, so I, you know, and then when I sort of was done with my journey, um, and I opened up a private practice, I realized like, I just can't allow that to happen to other people. And while. Clearly, my patient population, their diagnosis is not obvious on an MRI of the brain.

Um, I know what it's like not to be believed. I know what it's like not to be [00:34:00] taken seriously. And I know what it's like to be told like, Oh, you're just anxious. You just have anxiety. And so, um, I never do that to patients and I meet them where they are. And I believe what they tell me unless they give me a reason not to.

Really has maybe happened once in my entire career. So, um, I find that when you believe a patient, like things just get done. Like there's a, there's a therapeutic relationship that automatically occurs. And then you take, you go on that journey with that patient of trying to figure out what's going on.

And that's the part I love. You know, and to be honest, like I was a little burnt out on medicine, you know, but this has sort of renewed my. My passion for it's right. I love neurology again. I love medicine again. I love working with patients again. And so, um, I think this is why there's such burnout because doctors aren't given the time to really connect with their patients any longer.

And I know a lot of patients like to complain about doctors and I try to defend them [00:35:00] because I think the health care system is broken. Yes. You know, Doctors that work in hospitals are only given 20 minutes to see a patient and you're not going to get anything done in 20 minutes. I mean, I can't. And so, and the patient won't feel seen in 20 minutes.

So, you know, I think that that's the problem, not the doctors. I think it's the system that just breaks them down. And then, you know, when they don't have enough time to really deal with patients, then they just sort of decide like, okay, well, I'll just do the bare minimum, which is like, what's your symptom?

Here's a, here's a prescription. Right. And so, or you're just anxious. Don't worry about it. Just go home. Go, go have fun. Go, go, go to the movies, you know? So I think so. Yeah. So I, I, I knew what it was like not to be felt and I, I never want anyone to feel that way. And if, if I was, was treated that way as a neurologist, I could, you know, I, I feel bad for these patients.

How do they navigate the system? So, yeah, so that's, that's why I do what I do. So I start up in my book sort of telling that story [00:36:00] and, and how that led me to sort of the place where I am today, which I never thought I would be. I mean, who knew a neurologist, you know, was going to be a connective tissue disorder specialist.

Right. Right. Yeah. I mean, seriously, like, so, but that's where it led me because it's such a connective tissue Disorders are such risk factors for everything else that can go wrong with the body that you know that that that's what creates I think complex presentations and so they weren't getting answers from anyone else and they just came to see me and I just decided that I would believe this and figure it see if I could help figure it out and it turns out that a lot of them have connective tissue compromise so I dive deep into that and then here I am today You know, 10 years later, 

Dr. Linda Bluestein: yeah, exactly, exactly.

And, and I feel so badly for physicians who, you know, come out of training, they have a massive amount of debt and they have to take a job in a traditional model where, uh, I have so many, you know, [00:37:00] physician friends working in those kinds of models. And like you said, 20 minutes for new patients, 10 minutes for.

You know, returning patients and it's insane. And I mean, some people they'll see like 40 people in a day, which maybe that math doesn't quite work out, but I, but I do know definitely that there's people that see that many patients in a day and yeah, yeah, 40, 50, yeah, no, I can't. I mean, I'm sure your caseload is like mine, where you could never see that many people with these complex conditions in a day.

Never. There's no way you can't, you can't serve them properly. So, but, but. But when you have this massive amount of debt and you have, you know, a family, a young family or, or whatever, 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, you know, your self esteem or for feeding your sense of meaning. It's really problematic. 

Dr. Ilene Ruhoy: I completely agree. Everything that you just said is was spot on. That's exactly what happens. [00:38:00] And it's such a shame. And it's a shame. And what's even more of a shame is that the insurance companies have made us doctors look like where the tools, you know, where the problem, where the bad guys and the hospital administrators have done the same, you know, so somehow the doctors are the scapegoats for everything that's wrong with the health care system.

But we're the only ones trying to make it better for patients. It is. So it's, the whole thing is so broken and you know, it's very saddening when you think about it. 

Dr. Linda Bluestein: It really is. And we're the ones adding value. The insurance company, where's their value? I mean, it's, there is no value. Yeah, there isn't. And the, the hospitals have such powerful lobbies and it's amazing.

I just saw a statistic the other day and I wish I could remember it more specifically, but it was something like, The number of healthcare administrators over the past decade or something, I'll try to find a statistic and or the article and put it in the show notes, but but had gone up by, you know, I don't know, 30 fold or 10 fold or 15 fold some dramatic number, whereas [00:39:00] the number of physicians had gone up, you know, I don't know, 5 percent or something.

It was just normal growth, whereas the number of administrators had gone up dramatically. And it's just, yeah. And, and obviously there, that money has to come from somewhere. So that's the other thing is for every dollar that's spent on healthcare, a huge amount of that is going to insurance companies and administrators and things like that, not actual care.

Dr. Ilene Ruhoy: And what people don't have to recognize, and I'm sure that they do, but it's important to point out that the only billable people in the healthcare system are doctors, right? So it's on our backs that we pay the administrators and that we get the insurance companies, their money and. And that's not fair because, you know, we're the ones that are not micromanaged by the hospital administrators, by the RVUs and how many patients you're seeing and what you're ordering or not ordering, you know, that kind of stuff.

And so it's, it's, it's just so, so upside 

Dr. Linda Bluestein: down. Yeah. Yeah. And that's why so many practices. You [00:40:00] know, I mean there used to be lots of private practices, right? But so many of them have gotten Absorbed and bought out by hospitals because the overhead became so high I mean that's what happened with my husband's group Their overhead was really low when he first started it They had they had basically one to one for every doctor.

There was an administrator So like three doctors and three administrators and by the time he left there were like seven doctors and like 45 administrative people. Oh my God. Yeah. Well, because you know, right, there's the person that has to get the prior off for the CT scan or the MRI or whatever. So you, they, you know, they had this massive amount of people.

And exactly what you just said, it's the doctors who are creating the billable. Hours and, um, yeah, so their overhead went from like 20 percent to 60 percent over the course of his career. So wow, that just was not sustainable. 

Dr. Ilene Ruhoy: Nope, it's not. And it's also what's behind a lot of the mergers that are happening amongst the hospital systems, right?

And some of the mergers are not in the patient's best interest. I mean, my [00:41:00] husband's group was bought by, um, A very religious hospital organization. And so they did away with like gender affirming care and, you know, transition medicine and abortion care and trans, trans rights care, you know, whatever the hospitals were supporting, they did away with all of that.

So there's a lot of pain in the community because of that particular merger. But, uh, but then there's also. You know, further economic downfall on the doctors because now there's a lot of administrators as with your husband's experience is a lot of administrators who are looking at what the doctors are billing and what they're not billing and what they're doing and not doing.

And you know, no one, I mean, the other thing that I don't understand is that doctors by definition are supposedly an intelligent lot, right? Like we're, we went through school, we took a million exams. I feel like it was a million. I was always taking an exam. Yeah. I know. Right, exactly. Um, and yet we're not allowed to even like use our brains or give [00:42:00] opinions or help to decide on structure and, and system.

And like, we're just, I feel like we're just sort of relegated to an exam room and just told to see patients all day, every day. And I just don't understand the misuse of what are presumably Not only intelligent people, but but caring and compassionate people. Why else did we become doctors? You know, I mean, when I graduated college, a lot of my friends, you know, I'm from New York.

So a lot of my friends went to Wall Street and made, you know, millions of dollars by the time that they were like, 30. And I was, you know, in residency, you know, it's a very different life that you choose, you know, so it's like, you know, why did we do this? If we're not going to be given, you know, the, the respect and, and, and the, the valor that we deserve in, in my opinion, you know?

Yeah. 

Dr. Linda Bluestein: Yeah. And I, and I think that. In terms of, um, what's changed over time, and I want to talk about how your practice has changed over time, but I, but I know for sure, uh, seeing this in my husband's [00:43:00] practice, that when he, when he first started his first job, well, actually, this was his only job as a urologist, they, they valued quality.

And the hospitals were so happy that he was there doing surgery and, and by the end, they just wanted somebody there saying patients. They really didn't care about quality anymore. So that, so that's also really upsetting. And I know your practice has evolved a lot. Um, so I'd love to hear about that. 

Dr. Ilene Ruhoy: Yeah, my practice has evolved and some days I feel really badly about it because I recognize that my choice to not.

Engage with those insurance criminals has, you know, consequence on on 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, um, so I had to choose not to bill insurance and and over the years, you know, it was, it yeah.

It was clear to me that I made the right decision because I will spend a lot of time with patients. And so, as you know, insurance companies don't bill you for extra time spent [00:44:00] with patients. And so a lot of my time was just being non reimbursed and that is not a good business model. And any business person would tell you that.

And I would have business people as patients who would say like, how are you making this go? And I'm like, I'm not, I'm failing. And so I realized I had to make different business decisions. And so that was one of the decisions. And so, Since that time, though, um, I continue to not bill insurance, of course, and I've, I continue to, and obviously I offered, you know, treatment options, but it's non bill, you know, I don't bill insurance for them.

Um, and it does create, I mean, I feel badly about it on a lot of days, you know, especially with patients who I know are struggling and suffering and I, you know, and I. And they will tell me that they've saved up for an appointment which, you know, breaks my heart. But, um, I, I, and I know that there's going to be further changes in the future to my practice only because I don't know how else to do it.

But, uh, it's just, and again, I don't, it's because I, I'm made [00:45:00] to, to do these kinds of decisions. I, I'm, you know, the healthcare system is so broken and I really want to continue doing the work that I'm doing because I have such passion for it. And as I said, I'm finally happy again in medicine and in neurology.

I don't want to give it up and there's only a few ways of which I don't have to give it up. And unfortunately that means, you know, cash pay and concierge kinds of services. And so that's what I'm thinking through actually at right now about my next change of model. 

Dr. Linda Bluestein: Yeah. And, and, and I've basically was in the same situation when I went to open my practice.

I Quickly realized, you know, you do the math and you figure out, like you said, you can't pay for the Wi Fi and a receptionist and, you know, someone to clean the exam rooms and and all of those, you know, there's a lot of expenses. And even if even if you're, you know, not Oh, Uh, part of a big hospital system.

There's a, there's a lot of expenses. So yeah, it's really, really, really challenging. It is challenging. 

Dr. Ilene Ruhoy: And people also don't realize the [00:46:00] extraneous expenses. I mean, I just renewed my California medical license for 1, 200. Right. Right. I mean, and then there's all kinds of fees and now practice insurance and, you know, commercial insurance and, and it's all EMRs.

EMRs. Oh my gosh. EMRs. Right. Exactly. Exactly. So like, Yeah. And I don't think that the public understands. I mean, how many we're nickel and dimed as doctors. We really are, 

Dr. Linda Bluestein: you 

Dr. Ilene Ruhoy: know, and so it's very hard. It's a, it's a, it's very, it's a very hard profession to be in if you want to do it well for patients. So you have to make these hard decisions.

Dr. Linda Bluestein: Yeah. And if you want to treat people that have chronic problems, because that's so different than dealing with a discreet, specific thing that, uh, very, very different. And speaking of things that are more, you know, widespread, multisystemic, the role of connective tissue in, in health, um, getting back to, to that, what has surprised [00:47:00] you the most about the role of connective tissue?

Dr. Ilene Ruhoy: What has surprised me the most is that. Without our connective tissue, we have no health. So, what I learned that I never knew and was surprised to learn was that where our anatomy sits, is genetically predetermined. And so if your connective tissue is failing to keep it where it needs to be, then nothing is going to work well.

Now we've always learned from physiology, of course, anatomy, physiology, remember those days that a lot of our, a lot of our body works through cellular signaling. And so there's a, an expectation that where the signal is sent out from that it'll be delivered at a certain place. Um, but when that connective tissue isn't holding Organ and therefore those cells in the place of which and even if it's off by a millimeter, it's not where it should be.

And that signal while it gets there still because it's in their vicinity. It's not it's not as loud and it's not as strong and it doesn't provoke as much [00:48:00] of a. Post signaling kind of transmission, right? So where the, the membrane of the, the receptor and the membrane receives it. And then there's all kinds of membrane transformations, uh, receptor transformations of the membrane.

And then it goes into the, into the cytoplasm, and then there's a, a cell, you know, there's different components that take place for the signaling process to get to the nuclei or to one of the extra nuclei, vesicles in the cell. And so all of that is somewhat. Suboptimal because the connective tissue hasn't sort of kept that organ where it needs to be.

And so that was a big learning concept for me, and I don't think I explained it even all that well, but that was a big learning concept for me. And so then everything fell from there, where I realized, like, this is why it's such a multi systemic, complex, phenotypic, like, presentation. And so, um, And that's where I began and I started to sort of figure out like, well, what do we need to do?

And, you know, there isn't a whole lot of options for connective tissue, to be honest with you. And I always like the holy grail question I always [00:49:00] say is like, how do I regenerate your connect? How do I fix your connective tissue? Cause that's the problem, right? It's not, I mean, the meninges are connective tissue.

The vessel outer vessel walls are connective tissue. The fascia that holds our muscles are connective tissue. You know, the neurium that covers the nerves are connective tissue. Like, so it's, it's the fascia that holds our. organs in place in our abdomen and our pelvic cavities and our, even in our chest cavities, our connective tissue.

So like, how do I fix this connective tissue so that everything stays put? And so, um, and it's hard. It's, there's no easy answer for it. And so I, you know, I have dived into a lot of regenerative medicine kind of approaches like peptides and, you know, and, and I, I've been working with a company called Hope Biosciences that, um, works under an FDA program called right to try to use stem cells because we know that stem cells can regenerate connective tissue but unfortunately FDA isn't really clear on how they feel about it but the FDA has this program right to try of which hope biosciences tries to work under with these complex patients [00:50:00] and so I've been working with them you know so I've I'm always trying to think of ways of just sort of regenerating connective tissue Or at least healing it, right?

So it's inflamed because mast cells are largely aligned within the connective tissue. And so if you have mast cell activation disorder, they are very easily triggered and degranulating and so causing all this inflammation. So at the very least, I try to manage those mast cells so that I can reduce inflammation and therefore reduce the inflammatory burden on the connective tissue.

And that will allow maybe for some natural healing of it. Um, but, you know, with the patients with the, with EDS, I mean, there's already a, you know, an innate. Probably genetic component of connective tissue disorder. So, uh, so that's hard to overcome, but you can. And then, of course, every exposure results in some immune response and some inflammatory response.

I mean, we even showed that covid, uh, degrades connective tissue and mass cells released, you know, some proteases that target collagen. So. What I'm saying is [00:51:00] not theoretical. We know that this, this, this takes place. So if somehow we can manage this and counteract it, I think that we're giving the connective tissue at least a fighting chance.

Dr. Linda Bluestein: And what peptides do you tend 

Dr. Ilene Ruhoy: to recommend most commonly? My favorite is thymus and alpha one. It's a great image immunomodulator. My other favorite is GHK, which actually has used in burn centers because it helps to reduce scar tissue formation, but also helps. to lay down collagen layers in a little bit more of an architecturally sound manner.

So it's a little bit more structurally sound. It's got more integrity to it. And so I've, I've put in the years in the past five years, I've put almost all of my EDS patients on GHK. It kind of, it's an injectable, but with little insulin needles, so you don't really feel it. It's like the GLP one needles actually.

Um, and so, um, yeah, and so it really does help the connective tissue. 

Dr. Linda Bluestein: Very interesting. So do you, would you prescribe both of those in the same patients? Would they [00:52:00] sometimes take both or would you try one and definitely 

Dr. Ilene Ruhoy: both? You can definitely do both. I mean, sometimes I because they're out of pocket, of course, as everything is because nothing is covered by insurance that actually works.

Right? So, um, that's not true. I mean, some of the Medications can work. So, and they are covered by insurance, but a lot of things are not a lot of things are not correct. So, because of that reason, maybe sometimes I'll just say, let's start with one. And I usually start with a thymus and alpha just because I want to get some immune system control going.

Because, like I said, there's a constant immune provocation that happens. Um, But then I'll quickly add the GHK and sometimes, you know, patients will be able to afford both at the same time. I mean, they're not super expensive, though, for some, you know, it's like a, I would say like 200 a month for each, maybe closer to 300 for one of them.

But so not like crazy expensive, but obviously not, not affordable for everyone. 

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

Dr. Ilene Ruhoy: Yeah, so I, I do what's [00:53:00] what I refer to as receptor rest. And I think other people have, have sort of stolen that.

Phrase, but because at some point I think the receptors just get saturated and so you're just wasting your money because it's got nowhere to go, but so I generally do it for three months on and then one month off and three months on one month off. But I made that up to be. I mean, not the receptor rest part.

I made that. That frequency up. So that's that's where art over science comes in. Right. And I and I do a lot of art over science, to be honest with you in terms of like my recommendations and even the frequency of which I recommend certain things and you know, because there isn't a whole lot of evidence to go off of to really do evidence based on these kinds of options for patients who have been suffering for decades in some cases.

So, um, I just always say things like, I believe this to be true because I've just been doing this for years and I've seen so many patients. So, um, and I know it's not going to be harmful. So I still honor my, my, my oath, Hippocrates Oath, is that the, it's called [00:54:00] Hippocrates. I first do no harm. Um, and I, I at least think that there's the potential for, uh, Beneficial yield.

And so that's when I, you know, I will recommend it and then come up with like, oh, three months on three months, one month off kind of thing. So, 

Dr. Linda Bluestein: yeah, no, that's super interesting. I, 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 that.

We would inject it at BPC 157. On each other, you know, every night, isn't that romantic? He's coming up a lot this episode. Um, is that Almost valentine's day. So that's true. That's true. Happy valentine's day, honey Um, is that is that something that you that you sometimes uh recommend or not? 

Dr. Ilene Ruhoy: Yeah, I mean I like bb I mean, yeah, I just so thomas and alpha and ghk are my top two.

I would say my third is bpc 157 So yeah, I like that one a 

Dr. Linda Bluestein: lot Okay. Sounds good. Um, we had quite a few questions from, [00:55:00] from the listeners and, uh, for those who are listening to this episode, who also submitted questions and listen to episode 90, I promise I'm going to try to get through as many of these as possible, Dr.

Ruhoi, but we're going to need to wrap up soon, so we probably won't get through all of them. And, uh, but I will save them for our next conversation when we're going to talk about plasmologen and, and other, and other topics that we haven't covered yet. So, um, so yeah, so I want to try to get through some of these though.

And, uh, so like, like one that I thought was great and you kind of alluded to this a little bit at the beginning, is it better to lean into cognitive dysfunction or fight against it in the moment? 

Dr. Ilene Ruhoy: Um, I'm not exactly sure what that means to lead a fight against. How would you 

Dr. Linda Bluestein: fight against it? I guess is I think maybe they're referring to like kind of pushing through versus like what you said about going into a dark space and kind of.

Taking a little bit of a rest and yeah, 

Dr. Ilene Ruhoy: if you're [00:56:00] that's your brain telling you, it needs a rest. And so, you know, the brain is the most metabolically active organ of the body, right? So remember that, and if it's not getting what it needs, it wants to shut down because it cannot, it cannot generate the kind of energy that it needs to function appropriately.

And it does not like that your brain wants, I mean, your entire body wants. to be well. That's the beauty of resiliency of our, of our, of the human body. It really wants to be well. And so you have to listen to your body and most importantly, listen to your brain. So if you're having difficulties with cognition or with processing speed or latency of response, which is a very common thing I see on exam when patients are describing brain fog, meaning I'll ask them a question and it will, you can see their They're wheels turning before they respond, you know, and so then it's your brain telling you that it just needs a break and then I see with a lot of my TBI patients and post concussion patients and frankly, I think long COVID ME CFS it, it's likened to a post concussion syndrome and I feel like that's an infectious kind [00:57:00] of disorder.

trauma to the brain, right? So it's not a physical trauma, but it's an infectious trauma. I mean, there is chemical trauma. I mean, I have a lot of patients with chemical traumas from certain medications. I mean, fluoroquinolone is a perfect example, you know, a lot of fluoroquinolone toxicities, but also there are some other classes of drugs that can create some trauma to the brain.

So I. So yeah, I'm sort of rambling now, but I guess the answer to your question is listen to your brain. Take a rest. 

Dr. Linda Bluestein: Don't fight through it. So I will tell you your rambling is always beneficial. Your rambling is always so Educational and fluoroquinolones we know are toxic to connective tissue and I literally remember one night.

This is many many years ago I was very very sick and my pcp had ordered levofloxacin for me For this infection. And I literally remember in the middle of the night thinking, wait, if this can cause tendon rupture, then what's happening before the tendon rupture? Like what exactly? If [00:58:00] only a small number of people are getting tendon rupture, what about the other people that are maybe getting, and this was.

This was, you know, uh, I was at an anesthesia conference at the times and had to be at least 15 years ago, maybe 20, but anyway, so if that's interesting, I didn't know that about fluoroquinolones though in the brain. 

Dr. Ilene Ruhoy: Yes. Yeah, absolutely. And so it's funny that because I have a similar story when during that whole time when no one was taking me seriously and people would not listen to me and someone told me that I had, MRI, but they did a CT scan of my sinuses.

Um, And because I said I had headaches, and so I was, they were thinking, well, maybe it's a sinus problem, even though I've never had sinus issues in my life. Anyway, so they took a CT scan, and they said, oh, you have inflammation of your sinuses. I looked at it, there was no inflammation, but regardless, they prescribed me moxifloxacin.

And I said, for what? And 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. And I was Desperate. I mean, 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 [00:59:00] sick, Linda.

I was so sick. So every day I would take it. And then within two hours I had a high fever. I was nauseous. I was dizzy. I had, I developed rashes that would by the next day be gone. And so I was like, You know, I thought, was it really the medication and I would repeat it and I did it three days in a row and it was the exact same response.

I called the nursing line. They said it can't be the moxifloxacin. 

Dr. Linda Bluestein: Oh, you know, that just drives me crazy. I'm sure you hear this from people all the time when when they're told that's not possible. Yeah. Oh, and it's like, Oh, what? Because really, you know, everything that's possible. 

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 things like, well, that that is a little atypical for that drug, but I'm always willing to believe that anybody could react in any way to anything, right?

Because we don't understand their bodies or the state of which their bodies are in in terms of like an inflammatory state or immune dysregulated state. I mean, we don't [01:00:00] we don't know. I mean, the immune system and the autonomic nervous system, it's so complex and to act like everything is pots, for example, I told you, I'm very sacrilegious today.

Um, you know, like it's so complex, like you, I don't think any one of us can pretend that we absolutely know the answer. I never. I think I absolutely know the answer is I hopefully, hopefully I don't pretend like I do, but, uh, you know, I, so, yeah, I, anyway, yeah, I'm rambling and 

Dr. Linda Bluestein: no, this is great. This is great.

Um, stimulants. So that's something that, of course, a lot of people have tried for various different cognitive problems or ADHD, et cetera. Um, why do you think that oftentimes they're not helpful? 

Dr. Ilene Ruhoy: So what's so interesting about stimulants is that there's this biology group out in Drexel University, shout out to them, and I wish I remembered their names right now, but I don't, um, that they actually did a study in, not in, [01:01:00] um, humans, but on stimulants and connective tissue, and they found that it was bad for connective tissue.

And they reached out to me because really, you know, my daughter attends there and I, that's what I thought when I got the email, I was like, oh, they must know that my daughter's there, right? She's not in the biology program, but I don't, so I didn't know it's a large school, so I didn't know how they would know, but, um, but they had no idea.

They just, they knew that I was considered an expert in EDS. Um. Which again, always sounds funny to me as a neurologist, uh, so they reached out and they said that they had done this study on, or they were proposing this study on, on, on rodents, I think, I have to pull out the email, but because they had done all this research that suggested that stimulant class of medications can be detrimental to connective tissue, and I was so intrigued by this, and then I thought about all my patients that are on stimulants.

Yeah. Yeah. That's fascinating. So, I think, I think the answer lies in there somewhere, and clearly we haven't elucidated this enough for me to answer it more definitively, but, [01:02:00] um, I think that stimulants have to be used in the appropriate setting, and I don't think they're always used in the appropriate setting.

And I think some of the diagnoses for which they're used for, which, for which they're known to be effective for, I think have other physiologic and biological basis, um, for Okay. For that diagnosis in our patient population, then what is classic to respond to the stimulant class of medications? Does that make sense?

Dr. Linda Bluestein: Yeah, that does make sense and I think and I think the the other challenge is a lot of times at least i've seen this With my patients that you know, they've been on something long enough and they say oh no No, that doesn't contribute to my tachycardia or you know, once you're on them, I think it's really hard to 

Dr. Ilene Ruhoy: Yeah.

Dr. Linda Bluestein: Be willing to try going off. And I understand cause that's scary. And, and deep prescribing is not something that we're taught, right? We're taught how to prescribe. We're not, we're not really taught how to wean off medication or, you know, it's very, it's very, very interesting. I had this conversation with, with, uh, our colleague, Dr.

Heather tech was [01:03:00] super interesting. Well, actually she's in Washington state also. So she and I together. Yeah, absolutely. Um, and she does integrative medicine. I should, I should, well, I can introduce you offline sometime, but anyway, so, um, I just think that it can be really, really difficult once you start something, then to, you know, try going with without it because it might seem like it's helping and some of the, like you said, if there's a detrimental effect on the connective tissue, you're probably not actually able to see that or appreciate it at the time.

So that's really fascinating. 

Dr. Ilene Ruhoy: Yeah. I agree. Yeah, I think there's a lot of drugs that, you know, sometimes work and sometimes don't. And I think that to learn why they work and why they don't would help give us lots of clues into caring for these patients. And, you know, I often regularly say, you know, I don't prescribe medication that I don't understand its mechanism of action.

And so this way, I agree. Um, if a patient tells me that it was helpful, then I could, I have insight into what can be helpful or what might [01:04:00] be the underlying pathophysiology. And then conversely, if it causes side effects, I can think about how that might have happened, um, and in terms of maybe things that I want to stay away from in the future with regards to other recommendations for medications.

So I think it can be very helpful to understand the whys and the why nots of every medication that we use in our patient population, but that obviously takes a lot of time and effort and documentation and, you know, and so I think that's something that I, I definitely need more time to write up a lot of what I do and see and think and say.

But I, yeah, 

Dr. Linda Bluestein: and that's another process that I feel like your average person doesn't, you know, really have a good comprehension of and it's understandable why they wouldn't, but the amount of work that goes into publishing a paper and it's a perfect lead into the paper that you published yesterday, which I was so excited to see about your practice and Dr.

Bolognese surgical patients and the breakdown [01:05:00] by different condition and looking at the, I think they call it, you call it upset. Yeah. For, for in terms of how you looked at the data and what overlapping conditions were present, where there are certain things for the last thing before we wrap up, where there's certain things in that study that came as a particular surprise to you, 

Dr. Ilene Ruhoy: to me, no, because, you know, 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 C. C. I. Right. So I'm I'm I'm But I was the one caring for these patients up until that surgery. So I, I already knew that this cohort had a lot of these diagnoses that I, you know, I had made, um, or others, you know, other doctors had made, and then they just came to me for further care.

But so I wasn't surprised by the findings and, you know, and I also follow these patients postoperatively. So I knew how well they were doing. And so for the most part, and, and, um. Yeah. So, and that, you know, and that's why we just decided that we had to write this paper. And so we designed the survey and we [01:06:00] sent it out and we got a lot of information and, you know, we were all very pleasantly surprised by the ultimate analysis.

And so, yeah, it's been well received actually. 

Dr. Linda Bluestein: Yeah, really, really, really fantastic paper. And I, one thing that really stood out to me was when you talked about the affected and unaffected group. And I thought that was a great way to put it because, well, I guess the affected group has a known diagnosis of a connective tissue disorder, right?

And the unaffected group does not have a known diagnosis, but they Where we know they still may have a connective tissue disorder, but the unaffected group, the technically, you know, listed as unaffected group, uh, had a higher rate of having Chiari 1 malformation and also had higher rates of MALS or median arcuate ligament syndrome.

That was really fascinating to me. 

Dr. Ilene Ruhoy: Well, when you think about the role of the connective tissue, again, I mean, it's, it does make sense, right? So, I mean, in fact, Millerat many years ago found that, um, those with, uh, hypermobility actually were at greater risk of Chiari [01:07:00] malformation. So that had been shown previously.

Um, but I agree with the, with, in terms of the compression syndrome like MALS, uh, you know, it's a, it's a connective tissue disorder. It's a ligament, right? So. It made sense, of course, and it just sort of drives home the importance of evaluating for all of these diagnoses for these patients because, you know, technically and theoretically, you should need them all corrected for the patient to really have a chance at full recovery.

So that's what we do. And we look at every single one of these diagnoses for patients and try to make sure that we've at least identified it, addressed it, managed it, did what we need to do for it. And patients do do well when we make sure that we've comprehensively covered all of it. 

Dr. Linda Bluestein: Yeah, that's really, that's really important because we know that so many people are experiencing so many different things.

And, and that's why when they go to a doctor who only has five minutes, it does sound like they're. You know, making some of this up because we're, we're not taught in medical school that you can have [01:08:00] that many things wrong with you simultaneously. That's right. That's right. Right. It's, it's so 

Dr. Ilene Ruhoy: true. It's like you have that one thing.

What's, what's your chief concern? Your chief complaint, 

Dr. Linda Bluestein: right? Yeah. Yeah. Okay. Well, this has been such a fantastic conversation and we end every episode with a hypermobility hack. Um, you've given us already, of course, so many great hacks from the peptides to, you know, different medications that you prescribe and, and things like that and different therapies with the IVIG and plasma free system, things like that.

But do you have any. Additional hypermobility hack that you can share with the listeners 

Dr. Ilene Ruhoy: additional, um, that's hard because I, I did give a lot of my usual stuff, but, um, I think that, um, honestly, I, I always tell patients that a really good physical therapist that understands a hypermobile body is like worth their weight in gold, in my opinion, because, you know, all the fancy surgeries and the [01:09:00] medications that we can prescribe and even all of the peptides that I do and plasma free system immunotherapies, um, You need a good physical therapy.

You know, nothing is going to correct the underlying hypermobility permanently. Um, we can reduce the burden. We can improve the integrity, but a good physical therapist who understands the hypermobile body really is the cornerstone of therapy for forevermore, frankly, right? So well into. You know, later in life, um, to keep the joints flexible, to keep them moving, to keep things aligned and symmetric as best as they can, though none of us are symmetric, but as best as you can to sort of keep it symmetric.

Um, and just to really be your friend throughout this journey in life as a height mobile body. 

Dr. Linda Bluestein: And I'm glad you mentioned flexible too, because I feel like so many people. Uh, stop stretching completely. And of course you want to do it the right way, but that's what, that's what I did. And now I have parts of my body that are so incredibly inflexible and that's not good either.

I mean, we want to be [01:10:00] doing it in a very thoughtful and careful way and like nerve flossing and things like that. Right, right. You're a dancer. Oh my gosh. I was so flexible. I mean, we would do this thing called heel on the hand. And so you'd, you'd wrap your arm all the way around your foot and you'd put your leg like this.

And you know, and you just no problem Um, you know, and obviously doing the splits every which way and stuff like that, but but now I'm so not flexible and because I was having so many problems when I had my tarlof cyst and before I had my tarlof cyst surgery and I had so much pain in my hamstrings and I was basically told, you know, don't stretch and and I kept because it hurt.

In my brain, I'm thinking this state, you know, danger, danger, right? I'm getting that, that message to my brain. So I, I didn't stretch my hamstrings for so long that, uh, now it's, yeah, that part of my body, my posterior chain anyways is very stiff, which, um, which is not good. Yeah. No, 

Dr. Ilene Ruhoy: it's not good, but you should work on that with a good physical therapist.

Dr. Linda Bluestein: Yeah. I do [01:11:00] have one that I see regularly. In fact, she was on the show recently, um, but I, yeah, I'm continuing to work on it and um, I probably should investigate maybe adding some other things. I do red light therapy also. I 

Dr. Ilene Ruhoy: love red light therapy. So the enzyme of the electron transport chain is a photoreceptor.

So it's very responsive to things like red light therapy and it helps the mitochondrial function. 

Dr. Linda Bluestein: Wonderful. Do you have a favorite red light? Yeah. I do, but it's like 150, 

Dr. Ilene Ruhoy: 000. Oh, I don't own it. Don't get me wrong. I don't have that kind of money, but it really is like when you look at the parameters and sort of how it works and the technology itself, like it's really amazing.

I'll send you the link. You can buy it. 

Dr. Linda Bluestein: Yeah. I'll come to you and use it. Yeah. Yeah. Yeah. No problem. I just got a spare 150 K in my, in my back pocket. Um, and, and there are places where you can go and there's also things that you can purchase. So D are you aware of what the difference, of course, it probably depends on the place and the thing that you buy, but yeah, you know, [01:12:00] since you mentioned this one, that's like, you know, obviously out of most everyone's budget.

Um, 

Dr. Ilene Ruhoy: I, yeah, I mean, I don't, I don't support any, I mean, I don't want to name brands because I don't support brands and you know, so, but I do think that there are low quality ones and high quality ones. Um, and so I often wonder like if it's even worth a few hundred dollars for a low quality one that a lot of my patients are buying off the internet and you know, but I, so, but I, I know that red light therapy as a, as a treatment plan, as a modality can be very effective.

Dr. Linda Bluestein: Okay. Wonderful. Wonderful. Um, before we go, uh, first of all, I want to thank you so much for joining me again. So this is actually technically the third time that I've interviewed you, which is so such a treat. I'm so fortunate to have been able to talk to you. Yeah. I always love talking to you and I will make sure to link all of those other episodes in the show notes so people can listen to those as well.

And um, I also want to hear what. Projects you're up [01:13:00] to if you're doing if you have any new research projects or or anything like that. 

Dr. Ilene Ruhoy: Yes. So I'm a couple of projects. I mean, I'm doing a muscle biopsy study for electron transport chain abnormalities in me CFS along covid patients. And so that's sort of exciting for me.

I think I had mentioned. That may be in a previous episode, but, um, uh, but so that's one of the projects that I have going on, but I'm also working on, um, like a masterclass kind of thing, like an educational, yeah, uh, a couple of people had approached me to do this. And so I'm excited to do that to do a masterclass on basically neuro EDS.

Kind of a thing. And then I'm also writing a paper in Aurelia. So it sort of goes hand in hand. And, um, I think that's it actually. Otherwise I'm working. 

Dr. Linda Bluestein: Yeah. Yeah. I know. You're very busy. You're very, very busy. And for the course, who is the intended audience for that? Patients. I mean, obviously [01:14:00] 

Dr. Ilene Ruhoy: I would love doctors too.

I mean, so David and I, Dr. Kaufman and I have a podcast. I think it's called unraveled understanding complex illness. We recently went to you too. We were on Patreon. And so our goal, of course, was to educate and we had hoped to get a lot more physicians. As subscribers when we were on Patreon, we do have a few, but not as many as we'd hoped.

We have a lot of patients and who are supporters of which we love and are grateful for, but our goal is to actually help patients by educating doctors, right? So that patients are better understood. Mm-hmm . And so we move to YouTube in hopes that we could improve. The number of physicians that are prescribe are subscribing, I guess it's called on YouTube.

Subscribing, not prescribing. . . Um. So we just moved there and so it's fairly new and we actually do have quite a few more subscribers than we did it on Patreon. So hopefully we're keeping our fingers crossed and I think that we're going to be on your podcast together sometime in the future. 

Dr. Linda Bluestein: Yes. Yes. Yes.

Wonderful. That's, [01:15:00] that's so great. And actually this, we did a pretty big survey recently and found that 20 percent of the listeners of this podcast, at least in this survey, are healthcare professionals. 

Dr. Ilene Ruhoy: Wow. You have, that's a great number. You have, 

Dr. Linda Bluestein: yeah, it's really great. Good for you. Yeah, it's really great.

So while I, I agree, I love educating patients and that's so, so important. We know that if you can educate a physician and raise their awareness about these conditions and they can provide better quality of care and there are, there are, of course, some really great programs out there like the EDS echo program, but most physicians are so busy.

They're not going to take the time to, you know, take that much time out of their schedule. To learn about something that in their mind, at least when they start, it doesn't affect that many people, right? Many of their patients. Yeah. 

Dr. Ilene Ruhoy: Yeah. Right. And I think it's, it's like that old saying, you know, if you've, if you give a man a fish, he eats for a day.

If you teach him to fish, he eats for a lifetime. And so it's similar in that we want to help patients by educating [01:16:00] doctors so that when patients go see that one doctor, that doctor has a better understanding of what might be going on and where he or she can start. Right? So that's, that's our goal. 

Dr. Linda Bluestein: Yeah.

Yeah. And hopefully they won't be gaslighting people anymore and be much more empathetic and everything. Even if, if they're within the insurance system and they can't take a lot of time, maybe they can have them come back for another visit and things like that. Exactly. 

Dr. Ilene Ruhoy: Yeah. 

Dr. Linda Bluestein: Yeah. It could be done in several visits.

Right, right. Um, where can we find you online? 

Dr. Ilene Ruhoy: Um, I have a very mediocre social media presence. Um, so my, my new practice is called anthurium. org. So it's a plant, it's a perennial plant that has a heart shaped flower. So it's a very pretty plant that always. Sort of resonated with me. So it's called anthurium, a n t h u r i u m dot org.

So they can see my practice there. And then I have, I'm on Blue Sky, and I don't remember the name of my, [01:17:00] my handle. It's a weird, like, long, social blue sky, but it's Root Boy. What's Blue Sky? I'm not familiar with that. Oh, it's the new, so when people Left Twitter. They went to blue sky. Somebody told me to join blue sky.

So I gotcha. Okay. And I'm also still on Twitter. Okay. And then I'm on Instagram, you know, so, um, which I actually sort of like, but, uh, so Instagram is Eileen Ruhoi MD PhD. And then I'm, I have a tick tock account. I know it's almost embarrassing. Like I'm 100 years old. What am I doing? But, um, it's fun. I actually enjoy it.

And I enjoy, and that's Sometimes, you know, people will ask me questions and I love to, I love to educate. Like I really, it's a passion of mine. I just really love educating. Anyway, so I have a TikTok account, Eileen Roy MD PhD. So that's where you can find me. So come follow me everywhere because otherwise I'm, I'm really considering like leaving these.

These accounts, if it wasn't to be honest with you, it wasn't for the book coming out. Um, and my publisher really wants me to use those accounts [01:18:00] because I do have followers. So, um, I probably would like consider because I, I'm not, I, I, my per public persona, I'm always uncomfortable with, like, I always feel like, oh, that's so gringe.

Dr. Linda Bluestein: It's hard. It's hard. Cause we're, we're not. I mean, you know, we, we both went to medical school and through residency and everything, cause we wanted to take care of patients, not to be, you know, tick tock famous or anything like that. So 

Dr. Ilene Ruhoy: it's funny cause I will post a video and then I won't look at it for like weeks because I won't want to know what people are saying or how many likes it got.

Like I I'm very weird about social media, so go follow me so that I think that it's worth it. 

Dr. Linda Bluestein: Yeah. Yeah, absolutely. Absolutely. We will make sure to link all of that in the show notes so people can find your website. And, uh, your YouTube channel and all of those other, uh, wonderful places, because you're right.

It's a, it's a lot of work and, um, it's, it's wonderful to hear nice things from people. Cause that's the other thing is, you know, we're human too. Right. And so, um, I don't know [01:19:00] if this ever happens to you, but sometimes I'll get like 20 wonderful. Nice things. And then one thing that's not as nice. And I find myself hyper focusing on that.

Yeah. And it's, it's bad because there were all these other wonderful people that said such nice things and appreciate, you know, the, the work that we do that, um, does not matter. You know, bring in money and or cost money, uh, for us to do, it's, it's, you know, like this podcast is free to the listener, but you know, it's a, it's a labor of love for sure.

So, 

Dr. Ilene Ruhoy: yeah, no, I, I, that absolutely happens to me, which is why I don't look at my post for weeks at a time because I don't want to see someone who might've not loved my video or my post, you know, because then I, I, I am very sensitive in that regard. 

Dr. Linda Bluestein: Oh, I'm glad it's not just me. Oh my goodness. Well, I just love chatting with you.

This is so, so great. I think I just have to schedule more podcast interviews with you just so we can, just so we can hang out. And of course everyone's going to love hearing anything that you have to talk about. So thank you so [01:20:00] much. I know that you are crazy busy. You've got a lot of things going on and um, we'll definitely have to have you back when the book is out so we can talk about the book more specifically.

I would love that. I would love that. 

Dr. Ilene Ruhoy: Yeah, for sure. Yeah, so that people can read it first and then sort of know it's about and I could talk more specifically about it, but 

Dr. Linda Bluestein: yeah, and we can and we'll plan that episode to answer more listener questions because I, I do feel badly that we ran out of time to address.

Too many of the listener questions that came in last time. But, um, I also want to be respectful of your time. I appreciate that. I do have a transcranial 

Dr. Ilene Ruhoy: Doppler to do right now. Oh, I really need to let you go that. Yeah, yeah. But, um, so yeah, but I, I love answering listeners questions. And in fact, David knows that I get very upset during our live sessions when we can't cover all of the questions that come in.

Sure. So I really do want your listeners to know that the next time you'll have me on, if you'll have me, um, I will answer all the questions. 

Dr. Linda Bluestein: Okay. So we'll make that episode really just a, a Q and [01:21:00] a, you know, AMA kind of a thing. So, so we'll thank you again so very much. It was so great to chat with you and I really appreciate you taking the time.

No, of course. Thanks for inviting me. And it was great talking to you.

That was so much fun talking with my very dear friend and colleague, Dr. Eileen Ruhoi, 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.

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