← MS Living Well: Key Info from Multiple Sclerosis Experts
MS Living Well: Key Info from Multiple Sclerosis Experts
Beyond the Prescription Pad: Complementary and Alternative Medicine for MS
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- [00:02]
A
Hello, everyone. Welcome Back to the Ms. Living well podcast. I'm your host, Dr. Barry Singer, director of the Ms. Center for Innovations in Care and Missouri Baptist Medical center here in St. Louis. Today's episode is beyond the Prescription Pad. Complementary and Alternative Medicine and Ms. This episode is sponsored by TG Therapeutics well FDA approved therapeutics therapies remain the foundation of multiple sclerosis treatment. Many people living with Ms. Are exploring complementary and alternative medicine, also known as cam, to manage symptoms, boost well being and take a more active role in their care. These approaches range from mind body practices like yoga, meditation and acupuncture to supplements, exercise, and changes in the diet. In this episode, we'll explore the potential benefits of a range of complementary therapies commonly used by people living with Ms. We'll also delve into alternative Ms. Treatments and examine the risk of bypassing conventional treatment. Later on this episode, we'll speak with neurologist Dr. Daniel Banderi about his extensive experience with CAM therapies at a center in Southern California. But first, I'm really pleased to introduce Dr. Elizabeth Silberman. Dr. Elizabeth Silberman is the Ms. Regional Director of the VA Portland Healthcare System and is an Assistant professor of Neurology at Oregon Health and Science University ohsu. She received her medical degree at Brown University and completed a neurology residency at Washington university here in St. Louis. She also completed a neuroimmunology fellowship and master's in clinical research through OSHU. Welcome to the Ms. Living well podcast, Dr. Silberman.
- [01:57]
B
Thank you so much for having me. It's a pleasure to be here.
- [02:00]
A
Awesome. So let's explore the topic of complementary and alternative medicine. So first of all, what do we mean by these two words, complementary and alternative, and how are they different?
- [02:12]
B
The way that we use the term, especially when we were doing the research study, is thinking about medicines that are not typically aligned with Western standard medical treatment. So for complementary medicine, in the context of the paper, we're thinking about medicines that are perhaps used next to standard medical treatments. So an example is something like acupuncture that you might use along with other types of pain therapies. And alternative medicine is something that might be used instead of standard medical treatment. So that might be a patient who says, I want to try this diet as a treatment for my multiple sclerosis. So the terms complementary and alternative medicine were used by the NIH for years. Now some people actually favor using the term integrative medicine to think about both terms together.
- [03:00]
A
Right. So the same intervention could be both alternative and Complementary.
- [03:04]
B
Yep, that's exactly right.
- [03:06]
A
So how common is it for people with Ms. To explore complementary or alternative therapies?
- [03:12]
B
Yeah, you know, in our research it was really common. So to give some context, I am practicing in the Pacific Northwest, and the survey that we did was really focused in Oregon and Southwest Washington. But here we found that almost 40% of people who responded to our survey were using some type of mind body therapy. So that could be massage, yoga, acupuncture. 40% of people were using a specific diet, and around 30% were using cannabis as a treatment for their Ms. Specifically. So really high usage in this section of the country.
- [03:46]
A
Wow. So that's quite a bit. Why would someone with Ms. Go to that approach, you know, in terms of a complimentary medication?
- [03:54]
B
Yeah, there have been a few studies that have looked at this. Some people have found that people are more likely to use complementary or alternative medications or integrative health approaches if they are dissatisfied with current treatment options. The Danish Ms. Society actually did a study on this, and they found that people were more likely to turn to other therapies if they expressed that they wanted to be an active participant in their treatment and care and really wanted to take personal responsibility. They viewed CAM therapies as a way of being part of the treatment decisions. Others say that they don't feel conventional health care is as holistic as they are hoping that it be. And so this is a way of adding a little bit more, more holistic or wraparound care to their Ms. Care practice.
- [04:41]
A
So if they're interested in complementary therapy, where are people getting their advice?
- [04:46]
B
Yeah, that's a good question. And I think it's one of the areas that's challenging here. A lot of people turn to the Internet because the Internet's really accessible. It has a lot of information. Some of that information is great. Some of that information is not necessarily vetted as well. These days there seems to be a lot of online groups that are discussing this, maybe on Facebook, maybe on Reddit. And so people are looking within those communities to see what is working for other patients, especially when it comes to symptoms. So what are you using for your fatigue? What are you using for your spasticity? And they're feeding the information that way. We have a lot of patients who see naturopaths as part of their treatment team. And so that can be really helpful if there's somebody who is vetting those questions and thinking about a systematic way to approach different CAM therapies. And then we try to guide people to high quality evidence and we can find, but it's pretty hard to find really good randomized studies comparing some of these therapies to standard of care.
- [05:48]
A
Excellent. So I just want to clarify. You mentioned CAM therapy. Can you explain what that means, just for audience?
- [05:54]
B
Oh, yeah. Within the survey, we used the CAM as the acronym for complementary and alternative medicines.
- [06:01]
A
Are there certain groups of people that are more likely to pursue cam therapy versus traditional medications?
- [06:08]
B
We did our survey in 2018, and so this may have affected it somewhat, but the things in our study that were more associated with using supplements were older age, progressive ms, and then if you use one CAM therapy or complementary or alternative therapy, you're more likely to use multiple ones. Other studies have also found that people with a higher level of education may be more likely to use CAM therapies as well. And that might speak to that idea that patients want to take ownership over their health. They're going out, they're reading a lot. They are well versed in the information that's available to them and then bringing that to their doctor's office.
- [06:50]
A
So are there certain vitamins, herbs, or supplements that are more oftenly used by people with MS?
- [06:56]
B
The group at OHSU did this survey first in 2001. We repeated the survey in 2018. So we have some interesting data looking at differences in trends over time and then also looking at where things are now.
- [07:07]
A
How many people were in the survey?
- [07:09]
B
First survey was about 1700. The second survey was just over 1000. And 80% of people were taking vitamin D. But we also found that multivitamin use was high, around 45%. Other trends that we thought were interesting, we found that 17% of participants were taking herbs, and the highest category of that was turmeric. And of those 13% of people taking turmeric, 30% of those people found it to be very beneficial for their Ms. That's great.
- [07:39]
A
Any other specific supplements that you're seeing commonly used?
- [07:43]
B
Yeah, you know, supplements like gingko have been in the media a lot. People continue to take ginkgo, especially for some of the symptoms of cognitive impairment. We focused in on cannabis as well. And so we found some interesting trends there, which we can talk about now or we can get into a little bit later. And then also some really interesting trends with diets.
- [08:07]
A
Yeah, let's dive into diets. So what kind of diets are most commonly implemented by people living with MS?
- [08:14]
B
Yeah, so diet use in general is really high. 40% of people were using diet to treat their MS, and 60% of those people found it to be very helpful. Today, people tended towards a high protein, low carb diet and people were much more likely to do a wheat free diet versus 18 years ago. Again, that isn't too surprising thinking about where societal Trends are today versus in 2001. There's also a lot of interest in intermittent fasting, which I think is really interesting because there are a few ongoing larger phase two and phase three studies looking at calorie restriction. There's some interesting data showing calorie restriction might affect immune function and so it might potentially be a valuable piece of a treatment plan in the future.
- [09:02]
A
Yeah. Any use of Mediterranean diet or modified Paleo diet which have also been studied in Ms. Yeah.
- [09:09]
B
You know, I think that a lot of people anecdotally are tending towards those diets and I will say those are the diets that I recommend the most for my patients. I think that the data is good, not only just for ms, but just in general. I think it's a general wellness approach that seems to have good data to it. I think more importantly, it's more sustainable for patients as opposed to very restrictive diets where we're seeing patients yo, yo, back and forth. The one thing that we see pretty consistently in the research is that for patients with Ms. With fatigue, any diet that leads to weight loss tends to improve fatigue. And again, that's not surprising. But for people who are incredibly debilitated by their fatigue, any little boost to help can make a huge difference.
- [09:54]
A
Great. So Elizabeth, let's dive into mind body therapies. Can you kind of describe what those are and how do they support people living with ms?
- [10:02]
B
Yeah, so mind body therapies can be any combination of things. They can range from massage, yoga, acupuncture, stretching. Some things like tai chi, qigong can be used. We think of those mind body therapies, again within the context of being used to treat the Ms. Disease specifically or Ms. Related symptoms. We found that for a lot of people, using mind body therapies can be helpful. Specifically using things, things like acupuncture can be helpful for Ms. Related pain, but also things that kind of verge more into the exercise space, like stretching can be really helpful. And nearly 60% of people with Ms. Do some sort of stretching. And that isn't surprising given high rates of spasticity. Encouragingly, more patients are finding that their insurance is covering things like medical massage, sometimes acupuncture to help with some of those symptoms. And a secondary benefit from for many patients is we can try to eliminate taking lots and lots of symptomatic medications by adding in some of these mind body therapies, because we know that for patients with ms, they tend to be on a lot of different medications. More medications can be associated with more falls, more thinking problems. So I think that there can be a really beneficial role for the mind body therapies to be added into helping with Ms. Related symptoms.
- [11:28]
A
That's great insight. And then what about exercise? So we know exercise in multiple clinical trials has shown to reduce fatigue. So what exercises do most people use with Ms. And how often do they do this?
- [11:42]
B
60% of people are walking in 2018. That's up from 40% in 2001. We saw that more people were swimming. There have been since 2001 guidelines really encouraging 30 minutes of aerobic exercise three times a week for people with Ms. But excitingly, there's also some research that's starting to emerge that may indicate that aerobic exercise may actually be helpful for myelin repair. And, you know, that's very early research right now. But I think if that bears out, it could be really, really powerful information not only to help us guide patients, but also to motivate patients. Because it is very difficult when you have fatigue to figure out where to spend that energy. And if you can spend it in a high quality way that may end up benefiting your myelin long term, that would be fantastic.
- [12:34]
A
Yeah, that exercise happens in the morning because otherwise, you know, by the end of the day, you lose the gas in your tank. And it's really important to figure out what kind of exercise you can do based on your level of disability. So even if you have advanced disability, I saw someone today have weakness and three limbs, but that one arm is very strong. So we got to keep that arm strong by lifting weights or doing what we can.
- [12:57]
B
Absolutely, absolutely. I think that that's incredibly important.
- [13:01]
A
So you mentioned cannabis. So obviously cannabis laws are changing pretty rapidly across the country. Do we know why people with Ms. Are using cannabis? You mentioned how frequent. But do we know why?
- [13:13]
B
Yeah. You know, other studies have looked into this, and they found that people are using marijuana or cannabis for a number of different symptoms. One study quoted that 86% of their participants were using it for their sleep, 75% for pain, 73% for anxiety, and 68% for spasticity. The best evidence that I've seen published for use in Ms. Is focused on Ms. Related spasticity. The flip side of it that I always mention when talking about cannabis use is that it is not regulated. So it can be very, very difficult for patients to know exactly what they're getting. And we do know that cannabis can lead. Lead to thinking problems, can lead to people feeling confused, which isn't surprising. Every medication has its side effects. Cannabis probably does too. And so, you know, it's important to make sure that patients are talking to their physicians and hopefully an open and trusting relationship to figure out what the right combination of treatments is for them.
- [14:20]
A
Yeah, I think it is important to really have that open conversation. And it is important to keep in mind even CBD alone has some risk of liver toxicity. We did clinical trial on a cannabinoid spray, ended up being terminated, but available in Europe and really helped with spasticity. And there's quite a few clinical trials that support that as well.
- [14:41]
B
Yeah. And I think that if that line of research were to continue where you have the benefit of FDA regulation, oversight, it could be really promising for patients to have the comfort of knowing that they're going to get exactly what they are expecting every time and then can have. Have the benefit because the spasticity can be such a driving symptom for patients.
- [15:05]
A
So let's turn to specifically alternative therapy. We've talked a lot about complementary treatments. So I have patients, I'm sure you have patients that come in and say, you know, I'm not going to take a traditional Ms. Drug and they choose alternative treatments. What's the rationale behind that?
- [15:21]
B
For our study, we found that the patients who have progressive Ms. Are more likely to turn to these other therapies. And that's not surprising. Our patients with secondary progressive Ms. And primary progressive are the biggest population of patients that we really are not adequately addressing with our current therapies. So I think that that is one of the big drivers of people who are thinking about trying therapies that are not necessarily being brought up by their physician. I think the other space are patients who just don't have trust in the Western medical system for whatever reason. And I try to do my best to create an open space for all patients, but the system doesn't always treat everybody well. And there are patients who have felt that their symptoms have been ignored for years. And I think one of the challenges for providers is to think about how do you have open conversations about some of these therapies and leave your patients feeling empowered? Create space for the possibility that there may be other therapies that we don't know about and still continue to give guidance on what we think is the safest and most effective treatment plan. I think that's one of the ultimate challenges that is facing physicians.
- [16:34]
A
Yeah, I think those are great insights, but you also have to think about the risk of alternative treatments. And we've seen some alternative therapies not go so well.
- [16:43]
B
That's absolutely true. And, you know, we actually were specifically interested in looking at a category of high risk therapies. You know, these are things like venom therapy or venous stenting. Some of these procedures that were quite invasive that patients put themselves at risk for, oftentimes paid a huge amount of money out of pocket for. And I think one of our jobs is to make sure we're helping our patients make decisions that feel as informed as possible while still maintaining a relationship. And I think that that's where the art of medicine comes in. You know, my hope is that in 10 or 15 years, we'll be able to give a little bit more of a holistic approach.
- [17:23]
A
Yeah, I think the hard part right now is we have to really base it on clinical trials to prove that something works. And we really need some of this information more scientifically so we can give advice on which diet is going to be the most effective or which supplements can be the most effective.
- [17:38]
B
You know, one thing that I thought was really heartening, at least in our survey, is we found that people were much, much more likely to talk to their providers about the supplements that they're taking. Over the past 17 years, there's been almost a ninefold increase in the number of people who were talking to their providers about what they're taking, what mind body therapies they're using. And that's the first. The first step is having open communication about it.
- [18:04]
A
That's great. So let's head to a final question for you, Elizabeth. Are there some big unanswered questions about CAM therapy, complementary alternative therapy, that you really think need to be answered here?
- [18:19]
B
There's been a lot of interest in looking specifically at antioxidants and whether they may be beneficial to people with progressive Ms. And it's an area that I think is really interesting and exciting because these are supplements that have been on the market, they're out and they're available, but they may have some benefits to patients. Rebecca Spain just completed a phase three trial looking at alpha lipoic acid for progressive Ms. And the phase two studies showed that the medication may help to improve brain shrinkage over time. The phase three results are being analyzed right now.
- [18:58]
A
Thank you, Elizabeth, for really providing all your insights on complementary and alternative therapy and how it may play an important role in the treatment of Ms. Now and in the future.
- [19:08]
B
Thank you so much for having me.
- [19:20]
A
My next guest is Dr. Daniel Bandera, the Medical Director and founder of the Multiple Sclerosis center of California and Research Group located in Laguna Hills, California and Orange County. He's a clinical Assistant professor of Neurology and Neuroimmunology at the University of Southern California, USC. Dr. Bandera completed his residency in neurology at Kaiser Permanente Medical center in Los Angeles and his fellowship training in neuroimmunology and multiple sclerosis in USC. Dr. Ben Dary, welcome to the podcast.
- [19:52]
C
Hey, it's good to be here, Barry.
- [19:54]
A
Great to have you on. Dan. I really like to get your perspective as an Ms. Neurologist with years of experience caring for people with Ms. In Southern California, especially around complementary and alternative medicine or cam. So do your patients bring up alternative or complimentary therapies during their visits or is this something you have to ask about?
- [20:16]
C
It's probably combination of both. It depends on the patient themselves. A lot of the patients these days especially would like to have a conversation about it because someone has told them something about complementary medicine or they read things. So a lot of them bring up and those that don't, if I feel like they could benefit from some of these what I would call complementary rather than alternative, I'll bring it up to them. For example, I ask them are they taking any supplements that I don't know about or have they started using some homeopathy?
- [20:46]
A
So speaking of supplements, what kind of advice do you give to patients?
- [20:50]
C
So there are variety of them. Obviously regular basic supplement has been shown to be beneficial in majority of the patients with inflammatory process in their bodies, including multivitamins, vitamin C, vitamin D3 obviously. We also talk about some of the other supplement that can help with regards to anti inflammation and antioxidants in the body, including alpha lipoic acid for example, including turmeric in some of the spices that they can use in their food. One of the key thing about supplements that I always give a cautionary advice to the patient is to make sure they bring it up to attention of either myself or the physician. Because not every supplement, as you know, is quite beneficial in Ms. Patients. Some of them may boost the immune system, which is not something that we want our Ms. Patients to take. A lot of it. For example kava kava ginseng that you and I would take in the wintertime to prevent cold and flu. And some of the Ms. Patients may ignite inflammation. Inflammation within them.
- [21:50]
A
Yeah. Echinacea would be another one in that same category, Correct?
- [21:54]
C
Correct. So there are plethora of dose things that they also need to make sure to bring up to our attention to make sure it's safe for them to continue taking.
- [22:03]
A
How do you approach diet with your Ms. Patients?
- [22:06]
C
So there are plethora of diets available, obviously, and in California, there is no shortage of people advocate some sort of a diet. My discussion with them is surrounding balanced diet, and that means that they do not want to deprive themselves from a certain group source source of healthy food, including fresh fish, fresh vegetables, fruit, along with their supplements. Those are very important. Obviously, habits of diets are important as well. As you know, there are discussions with regards to intermittent fasting, for example. I've looked into this and one thing that I found out is that fasting to certain degree is good actually for metabolism and the cellular structures in the body. But long fasting is not because you start breaking down glycogen and some of the other thing in the body. But unfortunately, I'm not gonna be able to give them a solid advice as far as what is exactly right for them individually.
- [22:58]
A
Yeah, I think that's really important. Intermittent fasting definitely has some data in Ms. Clinical trial data and also in autoimmune diseases, but it is hard to maintain. I think a Mediterranean diet's easier to implement in one's lifestyle.
- [23:12]
C
Absolutely.
- [23:12]
A
And there is an association of Mediterranean diet with better outcomes in Ms. And.
- [23:17]
C
I think one of the key thing that also makes that particular diet a little bit more beneficial is the freshness of the material that is used in it, including avocado, oils, olive and certain things that we normally do not see in other typical diets. And I think those are the element that provides, as you mentioned, the antioxidant, and it increases the metabolism in their body.
- [23:37]
A
Yeah. And then some people do modified paleo diet, like Terry Wahl's protocol.
- [23:42]
C
Right.
- [23:43]
A
She has some data as well showing some benefits. What about acupuncture and massage therapy? Do you see benefit in your patients with ms?
- [23:51]
C
I strongly believe acupuncture can help a lot of patients, especially with chronic pain, because of the fact a lot of these patients have used Western medicine, management of the pain. And at some point the escalation of the management has gone up with the escalation of the pain, and they have not really got a lot of benefits from those. So adding acupuncture, especially for regional pain and spasticity in Ms. Patients, in my opinion, has been very, very important. There are a lot of my patients also who are on a regular massage schedule, like every other week or every two Weeks they report to me that without that massage therapy, their body is very tight, they're very fatigued and tired. So I strongly believe that also helps the patients with some of the movement, especially when you're looking at some of the patients who have limitations in mobility. I believe the acupuncture and massage therapy can help those people with a passive range of movement, which along with their physical therapy would be beneficial.
- [24:47]
A
Excellent. And what about chiropractors?
- [24:49]
C
So as you know, neurologists and chiropractors always have a little bit of a conflict when it comes to certain part of the body, including neck. So I have had patients who I have said, yes, you may see a chiropractor for lower back pain, let's say, or hip adjustment, something like that. One thing that I do not allow them to do is neck adjustment. There have been extensive study looking at that could be a little bit dangerous. That part especially depends on the severity of the neck manipulation. So. But other than that, I think they do have a role in joint and especially lower back help with these patients.
- [25:25]
A
Okay, so let's dive into alternative therapy. Some people make a decision. You sit down, talk about the option of going on treatment for multiple sclerosis, to delay disability and to prevent new lesions, and you go through the whole story why the benefit of disease modifying therapies is so important. But some people choose to hold off or avoid disease modifying therapy, switching to an alternative approach. So what are the reasons someone might do that?
- [25:53]
C
I think part of it is not fully understanding their disease. I believe social media has provided a great deal of service as well as disservice to these patients in a sense that, that some misinformation online can easily flourish like a fire into understanding what the disease is, what the pathophysiology of the disease and mechanism of action of these medications are. And some of these patients, because of a lack of understanding of what the intrinsic part of Ms. Is, they believe alternative medicine can replace the disease modifying therapies. Which I have to say in some cases in a very minor low active Ms. That might be the case. But even in those patients not being on therapy or anything probably would have kept the disease stable if they had very low active disease. However, that is not the case for majority of them as patients. Which means this is a progressive disease and the progression of the disease is something that as you and I know, can be prevented by being on combination of element including disease modifying therapy and combining it with complementary medicine rather than than having one or the other.
- [27:03]
A
Yeah, I think some people are also maybe a little distrustful, very concerned about the potential risk of these medications. And so I think sometimes it's really about having a conversation about the risk of the disease. You know, if you don't treat the disease effectively enough, you could end up with substantial disability. So let's say a patient says, you know, I really don't want to take any of these medications, I just want to be watched. How do you navigate that?
- [27:31]
C
I believe it depends on again, the severity of their disease. And the good thing is that we have metrics, we have MRIs, we have their clinical evaluations. That gives us some idea as far as what the severity of the disease is today and hopefully gives us some predictive value as far as where this disease is going to go in the next five years or so. So based on that, I'll sit down and have a straightforward conversation with them that I respect their opinion, I respect what they want. However, my professional advice may be something different at that moment. And if I strongly believe this disease needs to be treated at this point with disease modifying therapy, I'm not shy or ashamed of bringing it up to the attention of the patient. However, if this is one of those scenarios that even as a clinician you're on the fence about the fact that you know what, they really have not had a lot of activities, their disease itself, MRI wise is very low and, and it is something that could be watched, then together we make a decision that, hey, we're going to repeat the MRI in six months and I'm still going to see you every four to six months and you're going to report to me. I'll get a promise from them to contact me if there's any new symptoms. I try to practice as you, I'm sure, do sort of a cooperative management of their disease in the sense that together we make a decision with the patient about what is right for them. However, at the end of the day, I'm not shy. Once again, tell them I believe you might need something more than just watching.
- [29:00]
A
Let's dive into a couple other interesting compounds. One is low dose naltrexone, which is 4.5 milligrams of naltrexone. So what do we know about it? Promis or placebo?
- [29:13]
C
That's a great question. When we looked at the literature published about low dose naltrexone, there's minimal amount of information. Probably one of the best and the more concrete study was the one that UCSF did, looking at the low dose naltrexone compared to Placebo for some of these Ms. Patients and the result was not really promising in a sense that it did not make a huge difference for the patients. Now do I have patients who have been on it and they swear by the fact that this is really helping their disease? Absolutely. But I don't believe Barry, there's enough solid scientific research evidence that says low dose naltrexone is beneficial in lieu of using disease modifying therapy to control the disease.
- [29:55]
A
Yeah, so that was interesting. You brought up that UCSF study about 80 patients and it did seem to have an impact on quality of life like mental health and pain, but it was barely statistically significant. From what I recall, that study was actually funded by Ms. Patients, which is kind of great, but we need bigger studies. I agree. Any of your patients doing a hyperbaric oxygen therapy and is there any evidence there?
- [30:19]
C
Sure. So I have had patients who said they have done it. Personally, I have to say, acquiring information from probably close to more than a dozen of the patients, I have not seen a solid benefit from that to a lot of patients. And one of the key thing about hyperbaric chambers and oxygen, as you know, it's great in most cases for expediting the repair for the acute injuries when take place. But when it comes to chronic inflammatory process such as multiple sclerosis, there really has not been a solid study to show that there's a great benefit to it. And also from the statistical standpoint, collecting data from the patient themselves, I don't believe they have seen a solid improvement or stability.
- [31:07]
A
So Dan, over the years we've seen several alternative medications gain some traction and then fade. In 2006, a vascular surgeon named Dr. Zamboni proposed vein blockage in the neck called CCSVI caused Ms. What was the impact there?
- [31:26]
C
Oh my God. So that was probably the darkest phase in the past 20 years that we have seen about something non related to the pathology gaining such a momentum to the point that put patients in a massive disarray.
- [31:39]
A
Can you explain what the procedure was for the audience that's not familiar with what's going on here?
- [31:43]
C
The philosophy behind this, as you mentioned, was that there are a couple of areas within the body that the venous system get blocked and the blockage of the venous system prevents the proper drainage of the blood from those areas. Therefore that increases the demyelination and axonal loss and so on and so forth.
- [32:03]
A
So these are the jugular veins in your neck?
- [32:05]
C
Jugular veins. And in some cases actually they look at azygos veins and some of the other spinal veins as well, but the jugular vein was the main one because it had the best access. And these were primarily not neurologists, but they were radiologists or interventional radiologists who would do this. And they would do an mri, mrv, which would look at the blood vessels, and then they would basically put a balloon through that. And technically they would open up. It's like angioplasty kind of thing, but venoplasty. They would open up that vein technically, and sometimes they wouldn't put a stent in there. Part of it the problem was, first of all, most of them were unnecessary. Second, the complication rates of that was astronomical, to the point there was extensive amount of the subarachnoid bleeding that had taken place, and quite a few patients actually passed away right after the procedures. So at the end of the day, as you know, it became banned by US government and Department of Health. And a couple of these people actually got into trouble for basically doing the procedures unnecessarily.
- [33:08]
A
Yeah, there was tremendous momentum in part of the Ms. Community. You know, a lot of people were saying, we have a cure, but no one wants to give it to us. And so the national MSSI and the MSSI of Canada spent greater than $2.4 million on clinical trials trying to prove it one way or the other. And unfortunately, the trials were negative.
- [33:27]
C
I had patients who had borrowed money from their families and they mortgaged home because these procedures were not cheap. I mean, they were getting costs of close to 30, $40,000 to do the procedure on some of these patients. And a lot of these people, not only they did not see benefit, but some of them, as I said, they end up in the different hospitals with stroke especially, and some of the other neuro complications that we saw from that. And that's why I think there was extensive review, as you remember. And at the end of the day, they decided this was not something that should be done.
- [34:00]
A
Yeah. So it's always important to have some good solid data before getting into something with significant risk.
- [34:08]
C
Absolutely.
- [34:09]
A
Some of the other unconventional approaches out there have been taking out metal dental fillings and bee sting therapy. What do you think about these?
- [34:18]
C
Right. One of the key topic about neuroinflammation, as you know, is the topic of heavy metals in the body, and including mercury. Most of us who are old enough to have had fillings, you know, 20, 30, 40 years years ago, mercury was the main thing that was used. But at the end of the day, there were a lot of studies which you can do, you can look at the concentration of the mercury within the body, and you see that in 99% of the cases was normal. And that's part of the work that we always do also is that we check the baseline status of heavy metals in the body of the patients when they come for evaluation, including lead, mercury, arsenic, most of those things. And if the concentration of the mercury somehow is. It's too high, for example, then there are a couple of options at that point that could be done, including, depends on the diet, if they're eating a lot of seafood, something like that. But at the end of the day, the data on dental fillings, including the mercury filling, causing this degree of inflammation, is extremely low and not really substantiated.
- [35:21]
A
And the bee sting therapy, unfortunately, once.
- [35:24]
C
Again, it really has not provided any benefit to them as patients. Now, immunologically speaking, sometimes I sit down and think about the fact that obviously when you put venom in your body, your immune system gets a little bit activated toward certain negative antigen. And could that give him sort of temporary management? Possible. But at the end of the day, there are no solid data and no benefits to the beastings.
- [35:50]
A
There's growing research about mindfulness meditation for people with Ms. Do you find them helpful?
- [35:58]
C
Absolutely. I am a strong believer that there is a great body and mind connection. And this has been my philosophy for the past 25 years as Ms. Doctor, having a good support network is tremendous. But individually, every one of the Ms. Patients and even non Ms. Patients, we all could benefit from some bringing down our mind. So I call it downtime for our brain, and that can provide some solidarity to their homeostasis of their body as well. So I do encourage my patients to do things such as Tai chi, yoga, Pilates, as well as meditation, which has been shown, as a matter of fact, to reduce the degree of the inflammation that goes in the body, reduce the stress factors and the stress neurotransmitters that can go up in the body and start causing issues. So not only from the scientific standpoint, there have been extensive studies looking at it, but from the individual physician who treats thousands of patients with Ms. As you and I do, we see that in our patients, it actually makes a big difference in their quality of life.
- [37:05]
A
All right, we'll put that in the checkbox.
- [37:08]
C
At least some of the things are positive.
- [37:11]
A
All right, let's move on to the gut microbiome. There's a lot of data being collected now looking at the microbiome and impact of your gut gut flora on our immune systems.
- [37:22]
C
One of the biggest immune organ systems in the body is the gastrointestinal tract, as you know. So to that note, I do encourage my patients to at least try probiotics, which has been shown to stimulate and increase the concentration of the good gut flora. Some people tolerate, some don't. But the great news is that there are variety of probiotics that are available and I always encourage them to talk to me or talk to their primary care doctors as far as which one of them would have enough concentration of different strains of the bacteria that would help them. But I personally believe that if we're asking them to have a healthy diet, which is a great thing, we also should advise them to make their gut system a little bit healthier, also to allow the growth of the good flora in their body, which alternatively can help overall management of their Ms. And their diseases.
- [38:14]
A
Will Are there any emerging trends that you've seen for complementary alternative therapies?
- [38:19]
C
So homeopathy, in my opinion is something that could also be looked into a little bit more in addition and in conjunction with the disease modifying therapies, but combining everything that we talk about, including, you know, physical therapy, occupational pit, yoga, pilates, mindfulness diet, exercise for your quality of life. That's what I tell the patients to and hopefully with that we're providing him with some guidance.
- [38:45]
A
Yeah, that's a wonderful message. Well, I think we'll end it there. So Dr. Bandari, thank you so much for providing all your insights on complementary alternative medications and how you approach it with your patients.
- [38:58]
C
Oh absolutely. It was my pleasure.
- [39:10]
A
Thanks so much to our listeners for downloading this episode of the Ms. Living well Podcast, beyond the Prescription Pad, Complementary and alternative medicine and Ms. Thanks to Dr. Silberman and Banderi for helping us explore this popular and evolving topic. While CAM therapies aren't a substitute for disease modifying treatments, they can play a supportive role, especially when when chosen thoughtfully and discussed openly with your healthcare team. The key is staying informed, being cautious about unproven options, and making sure your care plan works for you. Thanks again to TG Therapeutics for sponsoring this episode. Keep in mind the topics we discuss in the show are strictly informational and not medical advice. Any change in your treatment should be discussed directly with your healthcare providers first. Our show is hosted by me, Dr. Barry Singer and Dr. Jamie Holloman and produced by Kerriette Harmon. Our theme music is the Gold Lining by Broke For Free. If you like the show, please share it with others living with Ms. And when you get a chance please post a positive review on Apple Podcasts really helps more people find out about the show. You can follow me on X at Dr. Barry Singer and Dr. Holloman at BrainBoyNeuro. 1. More information about our guests and their websites can be found in the show notes for this episode in the blog section of mslivingwell.org thanks so much for listening. This has been an Ms. Livingwell podcast.