Healing the Brain Holistically with Ilene Ruhoy M.D. Ph.D.

[00:11] Dr. Linda Bluestein: Welcome to Bendy Bodies with the Hypermobility MD. This is your host, Dr. Linda Bluestein. Today, Jennifer Milner and I have the great pleasure of speaking with Dr. Ilene Ruhoy, board-certified neurologist with a PhD in environmental toxicology and a graduate of the Integrative Medicine Program Fellowship at the University of Arizona. She is the medical director and founder of the Center for Healing Neurology in Seattle, Washington, and is the co-editor of Integrative Neurology, an Oxford Press book expected to be released at the end of summer 2020.
[00:43] Dr. Ruhoy was kind enough to have me as a guest on her podcast, Healing Neurology, very recently, and I highly suggest subscribing to both her podcast and this one, Bendy Bodies. Dr. Ruhoy, hello and welcome to Bendy Bodies.

[01:07] Ilene Ruhoy M.D. Ph.D: Hello, thank you for having me.

[01:12] Dr. Linda Bluestein: It's so great to talk with you today.

[01:14] Ilene Ruhoy M.D. Ph.D: Thank you. I thought Jennifer was going to hop in with the first question.

[01:18] Jennifer Milner: I am, but I just didn't want to be like, "And I'm Jennifer." But hi, Dr. Ruhoy, it's nice to meet you.

[01:26] Ilene Ruhoy M.D. Ph.D: Nice to meet you as well, Jennifer.

[01:30] Jennifer Milner: So you comment in your excellent blog that you are seeing more symptoms and disease associated with the brain and that there has been an increase in stroke incidence in young adults as well as an increase in early onset cognitive decline. When and how should we be protecting our brains?

[01:46] Ilene Ruhoy M.D. Ph.D: We should start protecting our brains as soon as we are aware of our brains. I think that's hard to say. As a mom of a teenager, I know that she literally has no sense of her health and mortality and all of that. So getting her to follow my guidelines or my rules is very difficult to do. But I do suggest that early adulthood is actually the best time.
[02:14] There's been a lot of research to show that the things that we do in life in terms of lifestyle choices can have great neuroprotective properties for our brain for years to come. And so the sooner we get on top of how we sleep and how we eat and how we move and how we manage stress, the better off we are as we age, because we lose resilience, we lose reserve, we're at greater risk for responses to exposures, we have greater risk for certain kinds of chronic disease. So the sooner we do it, the better off we are.

[02:47] Jennifer Milner: I agree with that.

[02:47] Dr. Linda Bluestein: Dr. Ruhoy, would you be willing to elaborate slightly and tell us how we can be protecting our brains?

[02:53] Ilene Ruhoy M.D. Ph.D: So there's a lot of things that we actually know now about the physiology of our brains and the health of our brains. We do know, for example, take our nutrition choices — we do know that foods can be pro-inflammatory or anti-inflammatory. And so the more times that we choose anti-inflammatory foods, the better off our brains are, because there is a very strong connection between the gut and the brain. If we reduce inflammation in the gut, we reduce inflammation in the brain. There's a lot of crosstalk that goes on. The gut-brain axis is a real thing. And in fact, an altered microbiome is very much associated with neurodegenerative diseases — things like Alzheimer's and Parkinson's and some of the other neurodegenerative diseases. We know that there are changes to the microbiomes of patients who have a neurodegenerative diagnosis. So we do know that what we eat actually plays a tremendous role.
[03:42] I advocate for a plant-based diet — I'm almost militant about it. But I also recognize that if you've been eating more of a standard American diet for many years, it does take baby steps. Every meal is a chance to make a choice, right? Every meal is a chance to decide, I'm going to eat a healthy anti-inflammatory meal today. I often recommend starting the morning off with juicing. I think it's very hard to sit down and eat three bunches of kale, but you can juice three bunches of kale and you can add an apple and a lemon and make it taste good. And then in the morning, when our GI tract is so naive — as I refer to it — because we fasted all night long, there isn't the acid and the enzymes. So when you drink a pure homemade juice with lots of healthy vegetables and fruits, it's just so quickly absorbed and it's really a great way to start the day. The cells just uptake all those nutrients and compounds and it starts you in an anti-inflammatory state at the beginning of the day.
[04:45] I learned that a little bit late in life after my brain surgery and radiation. I learned that juicing actually made the biggest difference in terms of my recovery. I wish I had started a lot earlier. Now I find myself preaching it to anyone who will listen. So I think that the food we eat is a very important part of our lifestyle choices that will protect our brain later on.
[05:08] I also think that the way we exercise — I think we need to move every day, and that doesn't mean climbing Mount Everest or being a triathlete. It just means we need some form of movement. Our bodies are meant to be in motion. Sitting all day at a desk, obviously, and on the screens, which is what a lot of our culture does, does not provide for good blood flow that obviously includes all organs, but specifically the brain. It also doesn't help to reduce some of the pro-inflammatory mediators that are released based on exposures that we have very little control over. So I think that we have to try to find ourselves moving every day. Studies show that if you just go out for walks or hikes out in nature every day, nature has a very important effect on our brain and our central nervous system in general. So I always tell patients to combine exposure to nature with some exercise. It can just be a nice brisk walk out in nature, a nice hike. And those have very positive effects on the brain.
[06:08] And then how we sleep is so important. We know that the glymphatic system of the brain — the lymphatic system of the brain — is most active during the night when we're sleeping, during restorative stages. That's where the brain rids itself of metabolic waste byproducts. The amount and quality of sleep is super important, and that's a whole topic in and of itself. But I will say that the way we live these days, our culture really lends itself to us having altered sleep patterns. So I always talk about trying to go to bed at the same time each night, trying to wake up at the same time each morning, trying to have a routine during the day, because the sleep-wake cycle is not only sleep — it's the wake portion. And what you do during that wake portion can actually help set you up for success during the sleep cycle. So those are some options. I can obviously go on and on.

[07:14] Jennifer Milner: So basically you're saying to eat well, exercise, and sleep well, right?

[07:19] Ilene Ruhoy M.D. Ph.D: Right. Huge groundbreaking stuff right here. And yet we—

[07:33] Jennifer Milner: There was just an article that came out in one of the neuroimmunology journals that talked about spinal cord injury and the standard American diet, the Western diet as they refer to it. And it showed that healing of spinal cord injuries was much more robust with a plant-based, non-Westernized type of diet — basically an anti-inflammatory diet. So what that means is that to have an inflammatory diet does so much more damage to our bodies, especially when our bodies need to be in a state of healing.
[08:04] And I would argue that just because of the things in our air and our water and our food, we're always in a state of healing, especially as we're aging — maybe not the 18-year-olds as much, but definitely the 40-year-olds, and then the 50-year-olds and the 60-year-olds and so on. So I think our bodies are constantly degenerating and regenerating. And the more that we can support that regeneration, the healthier we will be for a much longer period of time.

[08:33] Ilene Ruhoy M.D. Ph.D: And it's a great point to say our bodies are constantly in a state of healing. To have people understand that our body is constantly in a state of breaking down and also healing — and so if we can look at it as, do we want to constantly be turning towards breaking down or do we want to be constantly working towards healing? Both in some way are going to be happening. So if they're going to be happening, we might as well encourage the healing rather than waiting until, oh, I've had a spinal cord injury, now I shall change my diet and my lifestyle, right?

[09:07] Jennifer Milner: That's exactly right. 100%. We need to support the regenerative aspect. I mean, if you think about the bones — the osteoblasts and the osteoclasts—

[09:17] Ilene Ruhoy M.D. Ph.D: Osteoclasts, right.

[09:18] Jennifer Milner: Bone turnover. So that goes on throughout our bodies throughout our lives. So we want to support the regenerative aspect. And as we age, that sort of needs more support. And so that's what we should all be designed to do on a daily basis as much as we can.
[09:33] Listen, I recognize this is hard. Changing human behaviors is notoriously difficult. And so that's why I always say the sooner you can start, the better off you'll be. But it's never too late — and even if it's just baby steps at the beginning. We should think about it as supporting regeneration.

[09:53] Ilene Ruhoy M.D. Ph.D: Yes, I love that. Supporting regeneration. So these are steps that pretty much anybody can take. We — in general, this podcast provides information to patients and healthcare professionals about hypermobility disorders and related conditions. So can you start out telling us what conditions you treat that affect this bendy population?

[10:21] Jennifer Milner: I treat MCAS, mast cell activation syndrome. I treat a lot of dysautonomias. We do a lot of autonomic testing, and I find many of these patients have a history of hypermobility. So we see a lot of different dysautonomias, including the very commonly seen POTS, as well as orthostatic intolerance. We find some other kinds of dysautonomias as well. We treat small fiber neuropathy, which I find again, a lot of times there's a history of hypermobility. And then we treat chronic fatigue syndrome, which, as you probably know, is very much associated with the hypermobile population.
[10:57] In fact, I often see a CCI kind of picture — cranial cervical instability — because the ligaments are so lax that they are more susceptible to creating that chronic fatigue, which ultimately I think stems from some form of chronic inflammation. And so if you're already starting at a baseline with ligamentous laxity just from your genetics, and then you add chronic inflammation on top, then you are at greater risk of some of the comorbidities we see with the hypermobility population.
[11:27] So I treat most of all of that. I don't treat the hypermobility per se, and I certainly don't call myself a hypermobility expert as Dr. Bluestein is. But we definitely treat MCAS, small fiber neuropathy, POTS, dysautonomia, a lot of gastrointestinal dysfunction. We see SIBO as well as gastroparesis and constipation. And again, we see a lot of that because of the gut-brain axis. People will come because they have a neurological manifestation, but we ask a lot of gut questions and we find that there's a whole history there as well. In fact, that's what Jillian does — she's sort of a gut-to-brain kind of practitioner. So we see all of those different diseases and symptomology that we help treat.

[12:05] Ilene Ruhoy M.D. Ph.D: So it really goes beyond — if somebody is hypermobile and they think, well, I'll go see my neurologist about my migraines, they may find a host of other things that you can help address that they may not even have understood.

[12:23] Jennifer Milner: Yeah, in fact very often I get patients who come in who have been told they have fibromyalgia, and I find that it's not true fibromyalgia, but more that they have hypermobility, and now they have headaches and joint and muscle pain. We can argue about what fibromyalgia specifically means, because there's clearly a lot more going on there because of their hypermobility, which wasn't initially identified.

[12:52] Ilene Ruhoy M.D. Ph.D: Right. Well, there is a fair amount of people with hypermobility who have migraines and chronic headaches, and that does seem to be a big piece that goes along with it. What should patients and providers know about headaches, migraines, and fascial pain in bendy people?

[13:14] Jennifer Milner: I think it happens a lot. I haven't done epidemiology to give appropriate statistics, but I see it more often than I don't see it, frankly. I think there's a very common etiology there. When you have any kind of connective tissue disorder, it leads to myofascial pain just because the body isn't held together well, so there's inflammation in the connective tissue and in the fascial planes, and that ultimately will affect the neck and the head, and you often have neck pain, which then leads to headaches. And if there's a predisposition for migraines, that can evolve into migrainous types of headaches.
[13:54] They're not always migraines, and sometimes they're just headaches. People like to label everything as a migraine, but migraine actually has a very specific definition. And it's important, I think, because a lot of the drugs are targeting more of the migraine physiology. That sometimes is the case, without question, in hypermobile patients — and very often there's a migraine history, not only personal, but family history, and they are having migraines. Some of the newer drugs have been very effective for them.
[14:21] But I think there's an overall pain picture, is my point. I see a lot of what we refer to as cutaneous allodynia, so the scalp is painful, and there's a lot of cervicalgia where the neck is painful, and they have a lot of trigger point issues. I think it's just because the connective tissue holds it all together, and if it's not strong enough, and if there are reasons for it to be a little bit lax, then you are ultimately set up for a lot of this type of pain syndrome.

[14:53] Ilene Ruhoy M.D. Ph.D: Yeah, that's so interesting to me because, like you said, migraines are a very specific type of headache. And then you see people who suffer with these chronic headaches — and Dr. Bluestein and I share someone who has one of those — you see people who've had headaches for years, and without addressing the fascial component of it and trying to address the chronic pain that comes from it, it's really difficult to be successful with dealing with a headache.

[15:21] Jennifer Milner: I completely agree. And I'm actually shocked at how many patients' headaches are abated with a mast cell type of treatment, which I don't think is conventional. Sometimes you can go down the list of all the headache and migraine medications that we know of and not really get any kind of relief. But you start treating a mast cell concern — that may only present as headaches, frankly, in some patients — and they finally get relief.
[15:49] It's interesting to me because the brain and the central nervous system has H3 receptors, which are not really found anywhere else. We all know about the H1 and H2 receptors, and everyone's on antihistamines for that, but the H3 receptors are very unique and are ubiquitous throughout the central nervous system. So I think there's some relation there between mast cell degranulation and these headaches in hypermobile patients.
[16:14] I don't often jump to a mast cell treatment if there's no obvious other reason to think mast cell. But when I'm not getting relief from headaches with patients who have tried the gamut of things — including nerve blocks, which might give transient relief, trigger point injections, even vagal nerve stimulators — and I'm not getting permanent, sustained relief, I will go down a mast cell route and will often, not always, but often get relief from their headaches.

[16:44] Ilene Ruhoy M.D. Ph.D: That's so interesting and encouraging too. Something else that we see just in the general — well, I have all these weird things going on with me because I have a bendy body — is the whole brain fog thing.

[16:56] Jennifer Milner: Yes.

[16:56] Ilene Ruhoy M.D. Ph.D: So I'm wondering, how do you work up and treat brain fog and other cognitive complaints?

[17:04] Jennifer Milner: The words "brain fog" represent patients' perception of what they're experiencing. So I'll often just do a cognitive assessment initially to get objective data as to where their cognition sits — is there a true cognitive concern?
[17:20] But I also think that the brain fog experience is related to the dysautonomia that is very often seen with hypermobile patients. A recent study that was just published talked about changes in position that provoked the autonomic nervous system and resulted in changing cognition and changes in awareness. When I read that, I thought, that's exactly how patients describe their brain fog experience — their environment seems different, their interaction is off, they feel slower, they can't process things as easily or as quickly. There are studies that support that the autonomic nervous system, when engaged in an aberrant manner as it so often is in hypermobility, can produce alterations in awareness and mentation and cognition that are usually transient until things settle down.
[18:16] I also think that cranial cervical instability plays a role. We do know that things like tethered cords and cranial cervical instability can result, over time — not acutely or initially necessarily, but over time — in some hypoperfusion of the cord and/or the brainstem. And if you think about what happens when there's a lack of appropriate oxygen supply, I think that too can lead to the brain fog experience patients have.
[18:51] So I think it's multifactorial. I don't think that science has really pinned down specifically what it is, but that is exactly how I approach it because that's how I see it. And we will sometimes get good results based on those kinds of perspectives and insights.

[19:13] Ilene Ruhoy M.D. Ph.D: Absolutely. I wanted to circle back — you were talking about, with migraines, that you would look into the possibility of mast cell activation syndrome and perhaps treating with that protocol. What should we know about mast cell activation syndrome, especially as it pertains to the bendy body population?

[19:36] Jennifer Milner: Mast cells are ubiquitous in the body, but we also know that they are present in large numbers in the connective tissue. So I think it's very easy to understand why there's such a high percentage of MCAS in the hypermobile population. When they degranulate — mast cells are of course part of the innate immune system, and they are poised basically to help us fight off things that assault us, whether it's infections or exposures in our environment.
[20:06] When they're triggered so often and so exposed as they are in hypermobile patients because there are so many in the connective tissue, they tend to get a little trigger-happy and degranulate a little bit too often, at the drop of a hat. And so they're constantly releasing their mediators. We're always talking about histamine, and yes, histamine does play a large role in a lot of the symptomology we see, but mast cells have lots of other mediators, most of which are pro-inflammatory — the tryptases, the proteases, the prostaglandins, the bradykinins, leukotrienes, and so on. If these are being released at a frequent rate in the body, then you're going to have lots of inflammatory mediators that want to find something to fight, basically.
[20:51] With these released, it leads to more potential laxity of the ligaments, so more connective tissue issues, more fascial pain issues, and more headaches. And so that's why sometimes just by calming down the mast cell activity, you can actually have relief of quite a bit of pain, no matter where the pain is. But because we focus a lot on headaches and migraines here, we do see a lot of improvement in that kind of pain.

[21:19] Ilene Ruhoy M.D. Ph.D: That's so interesting and encouraging. So going deeper with mast cell activation syndrome — what can you tell us about MCAS and meningiomas?

[21:35] Jennifer Milner: I know where that came from — Dr. Bluestein shared that with me. And to be honest with you, I don't yet have a great answer. I posed it because I have a personal history of meningioma, and the more I read, the more I recognized the connection.
[21:54] In 2015, I was not feeling well, and I went to a lot of my colleagues, but it was thought that I was just working too hard and too stressed. And the truth is I was working too hard and I was too stressed, so I believed it. But I just sort of knew something wasn't right. I was having more and more headaches. I think because I have a personal history of migraines — they had not been frequent in my life, maybe one a year — but I was having them very often. It was just chalked up to stress making more migraines, and I believed it for a long time. But things just started to get worse. I was feeling unwell, and despite the fact that everything came back normal — including my labs and my neuro exam, I had no deficits — everyone just thought, meditate and take a break, which I'd already been doing.
[22:44] I kept asking for an MRI, and out here in Seattle at that time you couldn't order your own MRI, and no one would do it. They would just say, oh, you know too much, you're thinking too much about this. Anyway, long story short, I finally just went to a friend of mine who's an internist and asked her to please order me an MRI. She did. I went to the MRI machine, and as I came out, the tech told me to go directly to the ER. I said, why? And he said, I don't know, the radiologist just told me to tell you to go to the ER. So I went to the ER, and it turns out I had a 7-centimeter meningioma that had basically grown into my brain and pushed my left hemisphere over to my right, and there was a lot of swelling around it. Everyone was shocked that I had no neurodeficit, and shocked that I didn't have more symptoms. I think it was because it probably grew insidiously. But regardless, it was big, and I was admitted right away for surgical resection.
I had the surgical resection, and then it recurred a year later. So then I had brain radiation. The pathology came back that it was a grade 3, which is the worst type to have and means there's likely recurrence. My point being that because of all of that, I was now in the mast cell world and I started reading about mast cells, histamine, and meningiomas, and went down that path.
[24:07] I posed a question to leaders in the mast cell world and asked about the real connection. I don't yet have an accurate enough answer to counsel other people, to be fair. We sent off my tissue — my husband's a pathologist — and it wasn't definitive. It was equivocal in what kind of role mast cells played, to be completely honest. But I do think it plays a role. And when I think back to some of the symptoms I was having, it's actually some of the same symptoms I see my mast cell patients have — just not being able to tolerate food, constantly feeling nauseous, bloated, and often dizzy. It very much sounds like my mast cell patients. So I do think there's a role, but again, there's no real science right now for me to report. I continue to look and read and research.

[25:25] Ilene Ruhoy M.D. Ph.D: That's something that would be great to see some research on in the future, for sure.

[25:30] Jennifer Milner: I completely agree.

[25:33] Ilene Ruhoy M.D. Ph.D: Well, I could pick your brain for about 36 hours and not be finished. Not everybody has a chance to sit and talk with you one-on-one, so what do you suggest that people do if they're having difficulty getting help, and what appointment options are you offering patients right now, especially out of state and out of country?

[25:56] Jennifer Milner: First of all, the options that we offer — we do a lot of telemedicine, and even before COVID-19 we were doing telemedicine, televideo. We have a lot of patients who don't live in Washington State, so we are very equipped to offer either phone or video, and so that hasn't changed at all. That's always an option.
[26:14] But I do think that there's a lot of doctors out there who are really learning more and more, and I'm always impressed by how many more there are in the mast cell world, or at least how many more are showing interest and want to learn. There's a lot of good literature now for patients. And there's a couple of things that people can do. Antihistamines are over-the-counter, right? So you don't need a doctor to necessarily prescribe them. People can try on their own — Claritin and Allegra, of course following instructions on the box. Just recognize that a lot of it is the histamine, but it may not be the only mediator, because there are others. Sometimes you really need mast cell stabilizers, which are prescribed by physicians. But you can definitely see if you get any kind of relief from the antihistamines that you can easily buy in a drugstore.
[27:10] There are some supplements that are particularly helpful — quercetin is one of my favorites, as well as something called PEA, palmitoylethanolamide.

[27:19] Ilene Ruhoy M.D. Ph.D: Mm-hmm.

[27:21] Dr. Linda Bluestein: Yeah, I love that one.

[27:22] Ilene Ruhoy M.D. Ph.D: We are both fans of that.

[27:24] Dr. Linda Bluestein: I just took some right before this.

[27:26] Jennifer Milner: Yes, exactly. It's a lipid autocoid that has incredible anti-inflammatory effects. What it's really good for is that when we have chronic inflammation — so if we have mast cell activation and this perpetual inflammatory cascade — we ultimately lose that natural stopgap our bodies have to stop that inflammation in its tracks. PEA, with regular, consistent use, actually helps to stop that cascade and breaks the inflammatory pathways. It's really powerful to get everything under control.
There's also a synergistic effect with quercetin. I find it much more effective than either one alone. I generally just start patients there. I'm not a huge fan of putting someone on 20 different supplements — that's not really great medicine, plus you don't know the interactions. I think if you are targeting something specific, you find the 4 or 5 that really work for you. So I always just start patients on quercetin and PEA, and then may add a couple of others a little bit down the road. Patients do get a response from it.
And then there are some prescribed medications like cromolyn and ketotifen and low-dose naltrexone, of which I'm fans, certainly. But those do require a prescription. More and more physicians are really coming on board with mast cell concerns. It used to be either nothing or mastocytosis. Now we know there's a whole spectrum in between, and a lot of people fall in that spectrum. And other doctors are actually starting to recognize that.

[29:07] Dr. Linda Bluestein: Which is great, and which is what is exciting to me about both your podcast and this one. I know you and I also do a little bit on social media from time to time when we have spare time — which isn't very often, I know, for me and I'd imagine for you as well. I love it when a colleague will say, "Oh, I learned this on your podcast," and they start to look for that in their patients. That really gets me excited, because that means we're reaching people who have the ability to influence a lot of people's lives.

[29:43] Jennifer Milner: I completely agree. And that's why I love podcasts — we can reach people that wouldn't otherwise have access to us. I love that idea of really helping other people.

[29:56] Dr. Linda Bluestein: Yes, absolutely. And you and I met in an international group, the Mastermind Group, and we collaborate there and talk about complex patients, and I love it. It's such a great place to really learn — and of course, all of those conversations are de-identified. We talk about these overlapping conditions including Ehlers-Danlos syndrome, dysautonomia, as you've mentioned, mast cell activation syndrome, autoimmune disorders, and gastrointestinal problems. Some people call that the pentad because it happens to be 5 things. In your practice, are you seeing a lot of that overlap of those 5 things, or are you seeing different things? And what approach do you take? Have you identified any prognostic factors? That's a big question.

[30:49] Jennifer Milner: First of all, I don't know if I would call it a pentad. I think I'm up to 8 fingers now.

[30:53] Ilene Ruhoy M.D. Ph.D: So an octad. There you go.

[30:59] Jennifer Milner: Because there is so much. And so I just basically go down the list. I feel like there's no blueprint, in my opinion — or I suppose to some extent there is, because we sort of know the organ systems we want to cover, but I just listen to the patient's story. If I just let them start speaking, they will tell me about at least 3 of the 5 of the pentad. Then I'll ask the rest of the questions and get even more. And then I dive deeper and get other organ system involvement or other kinds of symptoms that I maybe hadn't thought about in more conventional pentad presentations.
[31:36] My approach is that I basically start with a diagnostic workup so I can really understand where in that pentad or octad I can start to try to treat. The things we've already talked about — like the antihistamines and the mast cell stabilizers and the supplements — apply to most people. So I tend to start those fairly soon on.
[31:59] I do full autonomic testing — it's not just the tilt table. We do the heart rate deep breathing, the Valsalva, the QSART. We do skin biopsy for small fiber neuropathy. Jillian does a lot of gut type of testing. Sometimes I'll even do an EMG nerve conduction study because patients sometimes describe large fiber neuropathies. I see CIDP often in this population — and when I say often, I don't mean very often, just more than I would expect. So sometimes I'll do a nerve conduction study. And then we do a lot of labs, and I do a large autoimmune workup because I really do believe — mast cells, as I said, are part of the innate immune system, and when they're chronically triggered and chronically asked to help heal the body, they eventually get worn out and tired, and so they recruit the adaptive immune system. All of our B cells come and start to make antibodies. At some point they might go astray and start making an autoantibody against some protein or antigen in our body. So I do a large autoimmune panel and I very often will find an autoantibody. Based on what that autoantibody is, I can help tailor treatment. I do quite a bit of IVIG for those patients — I see a lot of very severely, chronically ill patients and I find these autoantibodies. Sometimes just doing symptomatic relief with different medications doesn't really get them to where they need to be, so I'll do more systemic immunomodulation therapies like IVIG. That is helpful for a lot of people.
[33:39] And again, there's no blueprint. Nothing really seems to help everyone, otherwise it wouldn't be a controversy or a mystery. Sometimes if I'm suspecting a CCI picture, which is an anatomical concern, I do the workup for CCI — a traction trial as well as imaging of the cervical spine. I work with a neurosurgeon and send him imaging as well as the traction trial results, and then he decides if it's a potential surgical candidate. I explain that all of our medications and even all of our fancy treatment alternatives won't fix an anatomical issue if that's what it really is. Though there's some dialogue now that if you reduce the inflammation and sort of strengthen the ligaments, perhaps the CCI isn't as much of a concern — which may or may not be true. We're still even learning about CCI itself.
[34:53] We do a lot of mitochondrial medicine as well. I call it a hobby, but I did both pediatric and adult neurology — I used to work in the Children's Hospital out here and there was a Mito Clinic. And then I realized there's a whole mitochondrial dysfunction spectrum. It's not just about a mutation in the mitochondrial DNA or the nuclear DNA — there's a spectrum of dysfunction. And of course it makes sense, because when there's chronic inflammation, the electron transport chain just doesn't work as well and doesn't create as much energy as the cell needs to continue to either fight or to heal. So we sometimes work on that. We do mitochondrial assessments — a functional assay of the electron transport chain enzyme complexes to see how they're working. Based on whether they're working or not, I'll tailor treatment a little bit.
[35:54] So it's really an all-out approach. I always say to patients, I'll do as little as you want or as much as you want. And I always say we can stop when we find something and work on that and just see if that gets us where we need to be. If so, great, but if not, we'll continue to look.

[36:17] Dr. Linda Bluestein: No, no, we did not want a more concise answer.

[36:17] Ilene Ruhoy M.D. Ph.D: No, we love details.

[36:21] Jennifer Milner: Yes. Every patient just presents like their own story. That's what Dr. Bluestein and I were talking about earlier. Everyone just has their own story, and that story — no matter what it is, even if it's early childhood events, for example — plays a role in who they are today and how they're presenting and how they're even tolerating their symptoms. Some people are stoic, yet telling me about all this pain that they have and all these debilitating symptoms. And some people are not as stoic and just can't tolerate it and just don't want to live this way. So it's across the board, really.

[38:01] Dr. Linda Bluestein: And it's really fascinating because it sounds like you do such a wide range of things for the workup itself and also for the treatment — from juicing, which I love, all the way to the mitochondrial disorders and things. I'm thinking, you know, probably the more you learned about a lot of these things as you were taking care of your own healing after your surgery, right?

[38:31] Jennifer Milner: Absolutely.

[38:32] Dr. Linda Bluestein: And thinking, how do I get as many nutrients in my body as I can? Is that when you got into the juicing? I want to circle back to that a little bit.

[38:41] Jennifer Milner: I did. I started to read about all the qualities of certain plants — vegetables and fruits — and I was trying to eat them all and I couldn't. I was reading this juice book and I realized that I can juice all of these things. So I bought myself a very inexpensive juicer and just started throwing things in it, played with certain quantities of fruits to make it actually palatable and taste good while also packing in additional nutrients. And I just started juicing.
[39:18] Within a couple of weeks — I did it every single morning, the first thing I did, even before my coffee, which anyone who knows me knows I love my coffee — within a couple of weeks, the difference in my day, specifically in the energy that I had, was incredible. And I recognized that it was really the only change I had made at that time was the juicing. And I was in active recovery from a 7-hour brain surgery at the time. So I felt like I could do anything. It was such a huge difference.
[39:50] I've just continued on from 2015 to this day. When I travel, obviously I don't get to do it every day. But I basically preach it to my patients because I really am a firm believer that the foundations of health are probably the most important thing that we can do. Everything that I add on — if the foundations aren't there, it may not be effective at all, but it certainly won't be as effective as it possibly could be. So if you're not sleeping well, if you're not eating well, if you're not moving every day, if you're not finding ways of managing your stress, then all the treatments, all the meds, all the supplements, all the fancy things that we do might work, but they won't be as sustainable, in my opinion. We've just gotten so far away from what we can do on our own and become reliant on medicine. But I think food is our medicine, so we should focus on that first, and then everything we add is just icing on a cake — but no cake.

[40:59] Dr. Linda Bluestein: Not on a regular basis anyway.

[41:01] Jennifer Milner: Yesterday was my birthday, so I had a piece of cake.

[41:04] Dr. Linda Bluestein: Oh, happy birthday!

[41:06] Jennifer Milner: Thank you.

[41:06] Dr. Linda Bluestein: Happy birthday. And it's just so interesting because then you use things from juicing all the way to IVIG, working up the craniocervical instability, doing the traction trials, and helping people get to the right neurosurgeon and sometimes have neurosurgery. The full gamut is really—

[41:06] Jennifer Milner: Yeah, we leave no stone unturned. I'm with the patient on the journey. And again, it will start with "what are you eating today," like, I'm going to give you some fancy stuff, and then I'm going to send you to neurosurgeons, and we're going to do lots of systemic treatments. So yeah, we do it all.

[41:48] Dr. Linda Bluestein: That's fantastic. And part of what — the more I started understanding what you do, I thought, this is so exciting. I remember when I went through medical school and residency, I thought neurology was a field I couldn't do because there's just not a lot you can do for people. But you have found a way to help people in a way that is such a unique approach.
[42:14] And I'm so excited about this book that you've been working on. I can't wait for that to come out. I'm going to buy a copy for sure and share it with lots of people.
[48:52] I know there are a lot of patients with bendy conditions who have movement disorders like — I'm sorry, not dysautonomia, dystonia. Too many things that start with "dys," right? I've had some patients with very significant movement abnormalities. Can you tell us a little bit about what you see and how you treat those?

[48:52] Jennifer Milner: I think it depends upon the kind of dystonia they have. I don't really understand the physiology behind why there's such a large percentage of hypermobile patients who have some form of dystonia, but I do see it fairly frequently. It's usually very transient. When it's very painful, I'll use medication. Sometimes if it doesn't self-resolve on its own, we do things like Botox injections trying to release it. Of course, Botox is not necessarily what you want when you're very hypermobile, but we do it very locally for dystonic posturing — usually of the feet, occasionally the hands. And then we use some medications that just sort of release the muscles so the dystonia is not as painful or prolonged and can potentially even prevent it.
[48:52] The physiology behind the connection is something I'm not completely sure about. In some patients I was so curious that I thought, do they have an underlying dystonia? Their dystonia was so frequent and getting more and more severe that I thought maybe there's an underlying genetic dystonia — there are a lot of DYT gene variants. So I did the whole dystonia genetics panel, and I've done it 3 times and they were all negative. So I realized it wasn't a genetic concern, it was more a pathophysiologic issue related to the underlying etiology of hypermobility. I've even done nerve conduction studies over it but have not found any abnormalities. So it's a very interesting question, and I do treat it, but I don't completely understand it just yet.

[48:52] Dr. Linda Bluestein: Sure. Do you have any insight into that?

[48:52] Jennifer Milner: Well, I'm thinking of one patient of mine in particular — I'm not a neurologist, and I apologize, I may even be using the wrong terminology — she has abnormal movements, and in terms of describing exactly which type of movement it is, I'm not completely sure. But I did treat her initially with a lot of CBD and she got a lot better. Then she couldn't afford it anymore because it's not prescription and insurance doesn't cover it, and the dose that she was needing was pretty significant. So I wrote her a prescription for Epidiolex and she responded extremely well. It went away completely.
[48:52] The first time that she came to me, she had more of a shaking type of movement. She's had Chiari surgery, she's had spinal cord release for tethered cord, and my first visit with her — I think I had a 5-hour visit — the entire time she was shaking like this. People listening later won't be able to see what I'm doing, but she was shaking like this the entire time. And from notes I'd read from other doctors she had seen, some of them accused her of faking it.

[48:52] Ilene Ruhoy M.D. Ph.D: So wait, just show me — so that's not dystonia. So you're — I do see dystonia, which is more of a posturing, a locking up.

[48:52] Dr. Linda Bluestein: Yeah, yeah, yeah.

[48:52] Ilene Ruhoy M.D. Ph.D: But what you're referring to, I have also seen. Sometimes it's tremor, other times it's myoclonus, and definitely with a CCI kind of picture, I see a lot of spinal myoclonus. That can definitely be treated with Epidiolex. Dystonia, not so much, but any kind of myoclonus without question can be responsive to Epidiolex. And you can also have a central origin of myoclonus, coming from the brain as opposed to the spinal cord. But often when there's a hypermobile patient who has any kind of tremor or myoclonus, it's usually of spinal cord initiation and would definitely be responsive to things like CBD. Not everyone responds, but I see a lot of response to those kinds of medications.
[48:52] So yes, I see that fairly often. And that physiology is a little bit more understandable, because the meninges is connective tissue, and then you have a Chiari, and you've had surgical intervention so there's been some manipulation done to the cord or the brain or the skull. And so you can ultimately result in some abnormal, or I should say aberrant, signaling pathways that result in some of those movements.

[48:52] Dr. Linda Bluestein: Sure. Absolutely treated with CBD.

[48:52] Ilene Ruhoy M.D. Ph.D: Yeah, fascinating. And you had mentioned earlier small fiber neuropathy, and this is something I'm definitely super interested in. I think it's also very underappreciated in this population of people with Ehlers-Danlos syndromes and other hypermobility disorders. What else can you tell us about small fiber neuropathy in terms of how you work it up and how you treat it?

[48:52] Jennifer Milner: I work it up by doing a neuropathy panel in general, which includes a lot of things — your thyroid, certain nutrient levels, things that can result in any kind of neuropathy. Sometimes I'll do a protein electrophoresis looking for blood dyscrasias, which can usually result in a large fiber type neuropathy, not necessarily small fiber, but you can see small fiber superimposed on large fiber.
[48:52] I see a lot of small fiber neuropathy with chronic disease, and I definitely see it with dysautonomia because the small fibers do have a role in our autonomic nervous system and autonomic functions. So I will definitely see it alongside an abnormal QSART in the autonomic testing, if not more abnormalities.
[48:52] Then I next — especially in this particular patient population — do an autoimmune workup. I do a sensory neuropathy autoimmune panel and send it out to look for autoantibodies commonly known to cause sensory neuropathies. I would say about 10 to 15% of the time I find one of those autoimmune antibodies. I think antibodies are interesting — we look for what we know. It seems like every year we're told about new autoantibodies that are identified. Take the world of myasthenia gravis — I feel like every year or two there's another autoantibody associated with that diagnosis. So we have to check for 5 different antibodies as opposed to 1. There are just antibodies out there yet to be discovered. And so we don't always find an antibody, which can sometimes be the obstacle when you're trying to get insurance approval for IVIG.
I always get pleased when I see an autoantibody — not because I'm happy that the patient has an autoimmune disorder, but because I feel like I can finally get them appropriate treatment. So I do do an entire autoimmune workup for small fiber neuropathy, and then the autonomic study.
[49:38] Depending upon what comes back — what's positive, what's negative — if it's very painful, I can use analgesics. I think it's often related to mast cell, so I do a lot of mast cell work with them. If it is autoimmune, I do a lot of immunomodulation, usually with IVIG, sometimes oral modulation. It depends on the role the small fiber neuropathy is actually playing. Some people don't even know they have small fiber neuropathy until I do a skin biopsy, but I suspect it based on every other symptom they have.
[50:20] Small fiber neuropathy is also responsive to certain oxygen therapies. I do hyperbaric oxygen, which is very helpful for the symptoms. We also do the Vasper system here. I think it's incredible and I think everyone should own their own, except they're super expensive. It's basically a low-intensity exercise bicycle, but it's not really an exercise bicycle. It uses cooling and constriction — you have blood pressure cuffs on your arms and on your thighs, and then ice water flows through those cuffs, and you have your bare feet on ice-cold plates, and an ice-cold wrap around your neck. With the cooling and the blood restriction, it actually helps to increase the delivery of oxygen at an exponential force — there's extra perfusion along with vasodilation from the cooling. This really enhances oxygen perfusion.
[51:17] There are a ton of studies that have shown it reduces inflammation, improves cognition, and improves the production of anabolic hormones that help us build and maintain muscle. It's incredible. In fact, we're currently starting a study here on the Vasper and mitochondrial function, because it's also known to reduce oxidative stress. My hypothesis is that it'll improve electron transport chain function and improve oxidative phosphorylation. Some people with true cognitive dysfunction go on the Vasper and do the program, and even their spouses and partners and people they work with notice a huge improvement in mental clarity and loss of brain fog.
[52:13] It's a really great technology. NASA uses it. The military uses it. Professional sports teams use it because it really aids in recovery. It used to be just used for the very elite and very fit, but now it's migrating into the therapeutic and medicinal world because people recognize the possibilities. It's been very popular — so popular that we got a second one. We have two Vaspers now.

[52:40] Dr. Linda Bluestein: Wow.

[52:43] Ilene Ruhoy M.D. Ph.D: I have to come in on the weekend. You have to make an appointment.

[52:47] Jennifer Milner: Exactly. A lot of our patients, especially the hypermobile ones who don't really have an easy time exercising — this is something where they're completely supported and seated. We even have attachments to help them move if they need it. I've even had ALS patients on it. So there are attachments for anyone — there's no one who cannot use it. I recommend it regularly.
[53:15] We do a lot of oxygen therapies. We also do ozone injections for joints because a lot of our patients' joints are degenerating — we do PRP and prolotherapy and ozone injections. And then occasionally we do stem cells. I recently gave a talk at the International Cell Society meeting about how stem cells have been shown to basically transfer their new, naive, and young mitochondria to damaged and aged cells. They basically give these old cells some baby mitochondria, and that really ups the energy game — the cell heals itself and becomes a young cell itself. So we can go as far as that, although usually we get a great response well before that.
[54:01] My point is that I've looked at everything that's possible. We have our few favorites that really seem to work for a lot of people, and that's really what we focus on.

[54:15] Dr. Linda Bluestein: I love that about the Vasper because I'm thinking about a number of patients that I have seen with EDS who have very, very low testosterone levels — like free testosterone basically undetectable — and testosterone plays a really important role in pain.

[54:33] Jennifer Milner: Absolutely. There are actually studies about the Vasper and testosterone — it increases testosterone levels. Yes, absolutely.

[54:34] Dr. Linda Bluestein: So that is really interesting. You do a lot of really fascinating things in your practice. Another one I wanted you to share with us is about peptides. Tell us about that.

[54:58] Jennifer Milner: So we do a lot with peptides. One of the things in this population that has really been a game changer for a lot of people in pain is something called BPC-157. These are physiologic peptides — just a string of amino acids that are the same amino acids we have in our bodies. They're compounded in a pharmacy and have a shelf life, so they're viable in that regard. I only say that because I see a lot of things out there on shelves — any woman looking for face creams will see ones with peptides — but if it's sitting in a jar on a shelf, I'm not sure how viable they are. These are peptides we get from compounding pharmacies that really help to regenerate cells that have been damaged and need repair.
BPC-157, and there's a lot of literature on it, has really decreased pain. It either comes in a capsule form — which actually helps a lot of our SIBO patients and those with gastrointestinal distress, especially if it's been chronic — or you can do local injections or systemic injections, meaning just put in the abdomen for a full-body kind of effect. Some patients have higher dosages and put them in the joints themselves. They can do it on their own or some feel more comfortable having us do it. It's been really remarkable for patients.
There are also some other peptides I like that help support the immune system, like the thymosins. I do them for 3 months at a time, then we take a break and reassess. In this clinic we probably have 5 or 6 that we are really big fans of — a couple for cognitive support, some for pain, some for immune support and antimicrobial type of activity. We just generally go to this handful of peptides that have really been effective for a lot of people.

[56:57] Dr. Linda Bluestein: Wow. And you do IV therapies also. Tell us about that.

[57:00] Jennifer Milner: Yeah, we do a lot of nutritional IV therapies. We also do an IV Mitoboost, which is — the electron transport chain has cofactors and substrates, and if you feed it cofactors and substrates that it may not have enough supply of, it doesn't work as well. So we like to support the mitochondria as best we can with IV formulations — we do IV vitamin C, we do glutathione. We do things that help support the physiology. I don't bill them as curative on any level, but with regards to what we're trying to heal and treat, they are supportive therapies and ancillary therapies that are very, very effective when used as part of a program.

[57:45] Dr. Linda Bluestein: Fabulous. You have such a range of things that you're treating, and I love the fact that although your background is in neurology, it's also in integrative medicine, and so you're treating really the whole patient. Although the brain is the most important thing that we have — and that's what I always say.

[58:08] Jennifer Milner: I remember after my surgery lying on the couch saying to my husband, who am I without my brain? Like, I can't believe this happened to me. Who are we without our brains?

[58:18] Ilene Ruhoy M.D. Ph.D: Right, right.

[58:19] Jennifer Milner: It's the most important organ. I know there are other important organs, and I think my specialist friends would get a little riled up — I think the heart is just as important, which it is. But the brain is who we are, literally and figuratively. It's our personality, it's our emotions, it's our interactions, it's who we are. So all we can do to protect it, we should. And that's what I try to help people do who really don't know how to. And then of course, once your body is in a state of disease of any sort or inflammation, you just need more help sometimes. Which is why again, from the beginning of our conversation, the earlier you get started, the better off you will be. You won't start off needing lots of interventions and help.

[59:05] Dr. Linda Bluestein: Right, right. Grocery stores right now are filled with all kinds of things that we really should not be eating. Obviously, like you said, it was your birthday yesterday, and we don't need to get overly restrictive every single day. But we do need to be mindful. And so the things you talked about in the very beginning about nutrition and sleep and managing stress — those are so, so critically important.

[59:40] Jennifer Milner: I agree.

[59:40] Dr. Linda Bluestein: So is there anything that we didn't cover that you wanted to share? And can you let us know how people can learn more about you and about your practice?

[59:52] Jennifer Milner: I think we covered a lot. What Jillian and I have built here, I think, is really incredible because I do believe in the gut-brain axis. We have found ways of not only learning about our patients, but I really need to understand the patient to understand what they're here for. There's so much that goes into a human being. I like to know them, and sometimes that takes more than one visit, unfortunately, just because of the nature of medicine these days in terms of time.
[1:00:28] What we try to do is really get to know our patient and their lives and how their symptoms are interfering in their lives. Then we get to understand what their biggest concerns are. At the first visit, I want to at least address their prominent concern — the reason that brought them here. But we go beyond that, we ask a lot of questions, and as I've already discussed, we do a lot of evaluations and diagnostic workup.
[1:00:52] Jillian really helps — she corrects the gut. She's great with traumatic experiences in life. She's a certified Ayurvedic practitioner, so she brings that Ayurvedic wisdom with her. And then I focus on the brain, the central nervous system, the peripheral nervous system, the autonomic nervous system, and we bring it together and come up with treatment plans.
[1:01:09] We do a lot of genetic-type workups that really focus on certain SNPs that make each of us an individual. It's not the same direct-to-consumer kind of SNP testing that 23andMe and other companies offer — it really dives into the different metabolic pathways that go on. Our bodies run tens of thousands and hundreds of thousands of pathways each and every day without us even doing anything. So we really focus in on where any one of those pathways can possibly result in something we can intervene on that might help a symptom.
[1:01:49] Then we've just sort of come up with different protocols for patients. We have protocols for just about everything, to be honest, because we find patients actually wanted it that way. Patients understand it better when it's in a package. So we did design certain packages around your prominent symptoms — here's where we're going to start, and then we can go on from there.
[1:02:18] I think Jillian and I have formed a really great partnership. And then of course we have Dr. David Kaufman here, who is the infectious disease guru — he just understands that entire infectious workup.

[1:02:31] Dr. Linda Bluestein: He's amazing.

[1:02:32] Jennifer Milner: He is incredible. And I wouldn't know what I know about infectious workups if it weren't for him, because that obviously plays a large role in this patient population with regards to infectious exposures. We also have a psychiatrist here, Dr. Dan Krashen, who's a great pain psychiatrist. He used to run the chronic fatigue clinic at Harborview Medical Center, which is a large, well-known hospital out here in Washington state. He does a lot of pain interventions and he's just a great psychiatrist overall. So I feel like our clinic just has a lot to offer people, not just in terms of expertise but also in terms of treatment options.
[1:03:13] And I think otherwise we covered it. I feel like I ramble a little bit. Do I ramble?

[1:03:20] Dr. Linda Bluestein: Not at all. Oh my gosh, no.

[1:03:23] Jennifer Milner: I'm just so excited about what we do and so passionate. I'm in this world where I'm finally seeing people getting better, and even if it's slowly — which is hard in some specialties, especially neurology. So it's exciting, actually. And I think we're on the cusp of something big. I hope that we all, especially in our group, just continue to contribute to the science and contribute to the knowledge base and educate other doctors so that we can move forward and really start making a big difference in people's lives.

[1:03:59] Dr. Linda Bluestein: I think you're making a big difference already. It's very exciting. And I loved hearing more on your podcast, Healing Neurology. I loved hearing your story and hearing from Jillian and her story with Outward Bound, right?

[1:04:16] Jennifer Milner: She did some work with that.

[1:04:16] Dr. Linda Bluestein: Oh yeah.

[1:04:17] Jennifer Milner: Yes, she's amazing.

[1:04:17] Dr. Linda Bluestein: Yeah, she's amazing. So if people want to get more information about your practice, where should they go?

[1:04:25] Jennifer Milner: We have a website — centerforhealingneurology.com. We have a Facebook page and an Instagram page. I'm not the most social-media-savvy, but we definitely do our best. You can find out a lot of information between our Facebook and our website. I very often will post articles on the Facebook page that I think are of interest to our patient population. And our website has all the services we offer. We are in the midst of planning a reconstruction of that website because we have added so many different programs and protocols in the past 6 months that our website doesn't necessarily reflect yet. But I still think there's a lot of good information up there. That's where I would recommend people go.

[1:05:12] Dr. Linda Bluestein: Okay, fabulous. Well, Dr. Ruhoy, thank you so much for taking the time to chat with us today and coming on the Bendy Bodies Podcast. This has been such great information, and I know everyone's going to be really, really excited.

[1:05:28] Jennifer Milner: Well, I was really happy to talk with you guys. This was really fun. So thank you for inviting me.

[1:05:32] Dr. Linda Bluestein: Absolutely. Well, it was great to chat with you, Jennifer, as always. And you have been listening to the Bendy Bodies Podcast with the Hypermobility MD. Today our guest has been Dr. Ilene Ruhoy, Medical Director and Founder of the Center for Healing Neurology in Seattle, Washington. If you have enjoyed this program, please like, share, subscribe, and leave a review. This podcast is for informational purposes only and is not a substitute for medical advice. Please see your own medical team prior to making any changes to your healthcare. Bendy Bodies original music is by Andrew Savino, and sound editing is by Rhett Gill. Thank you so much for tuning in, and we will see you next time on Bendy Bodies with the Hypermobility MD.