Lewy Body Roller Coaster
Lewy Body Roller Coaster
Part 2 the Syn-one Skin Test
Welcome back to part two of our interview with
Dr. Todd Levine from CND LifeSciences to share with us all information about the new syn-one skin test that can help in diagnosing LBD.
Our good friend Wendy Cogan joined us to help ask the right questions so we get a better understanding of this new test.
This is a three part recording because our interview was well over an hour and a half but we had lots of questions to ask the doctor.
Enjoy part two
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https://cndlifesciences.com/
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Hello and welcome to our podcast about living on the Lewy Body Roller Coaster a podcast for Lewy Body Dementia patients and their families. Presented by Lewy Body patients and their families.
Speaker 2:You will hear firsthand the ups and downs and twists and turns of Lewy Body Dementia From families directly affected. We'll share our support and experiences on all things Lewy Body.
Speaker 1:We're your hosts, Linda and Curry. I have a loved one with Lewy Body Dementia.
Speaker 2:And I am living with Lewy Body Dementia.
Speaker 1:Let's get started. All right. So we're back for week two with Dr Levine and Wendy Kogan talking about the SYN1 CND life sciences test. So, Wendy, let's jump in and get your help with the next set of questions.
Speaker 3:Okay, last time I shared a little bit of history on my husband's diagnosis with Lewy body dementia and this week I'm going to talk a little bit about how it evolved, his specific disease and some of the complexities that came into play and how we work with C&D Life Sciences to get a little bit more clarity. So, as I talked about, my husband was diagnosed with Lewy body dementia in 2020. At Mayo he had a positive DAT scan. He had a neuropsychological testing that was classic of Lewy body dementia. Other scans showed that he didn't have any Alzheimer's involvement and his clinical symptoms were similar to what Lewy body dementia patients have. However, some things he did not have classically as a Lewy body dementia patient and I really shouldn't say that because it does vary Symptoms vary by each person but he still does not have hallucinations.
Speaker 3:He does not have the REM sleep behavior disorder. He has periodic limb movement disorder, which is a different type of sleeping disorder, but he doesn't act out his dreams and he only has a little bit now of Parkinsonism. So he has a little bit of an action tremor at times and, again, he didn't have Alzheimer's. Well, he started to morph about a year ago and we were seeing apraxia, which means clumsiness when he tried to use his dominant hand, which is on the left. He has issues with, you know, sensing things with that hand, more rigidity on that side, kind of unilateral. All this is on his left side but in his scans most of his involvement is on the right side of his brain. But so then we began to think, you know, he was starting to evolve to look like a frontotemporal dementia called cortical basal syndrome. And so we were a little bit perplexed and we had heard about the cerebral spinal fluid test for alpha-synuclein, about the cerebral spinal fluid test for alpha-synuclein. So we went to our local doctor at the University of Kansas Medical Center, because we live in Kansas City and he went ahead and he ordered the cerebral spinal fluid test and, lo and behold, it came back negative. So now we're thinking, oh wow, you know, maybe Mayo misdiagnosed him with Lewy body disease, but he also has cortical basal, or maybe he has cortical basal syndrome. And we saw a movement disorder specialist. He looked at him, said yep, he's got cortical basal syndrome. He looked at him, said yep, he's got cortical basal syndrome. You know not sure why Mayo thinks he has Lewy body dementia, but he does have, you know he has cortical basal syndrome.
Speaker 3:So we went back to Dr Mayo and Dr Mayo, who is an expert in Lewy body dementia, he says I'm not convinced. He said I am not convinced that your husband doesn't have Lewy body dementia. And he said there's um, and I asked well, I said I heard about a skin test. Uh, cnd life sciences, have you ever heard of them? He goes, yes, he goes. He has Mayo at the time, um, I think they're planning on actually using the test. I guess, um, we can find out later if they've actually started. But basically they said that. Um, basically Dr Beauvais said if you get a negative CND life sciences test, then we'll call it frontal temporal. Meanwhile we did all sorts of genetic testing for frontal temporal dimension. All came back negative.
Speaker 3:So went back to KU. Our particular neurologist had never used CND Life Sciences. So I called CND Life Sciences and I said hey, do you know any doctors in Kansas City who have done this? We found a doctor who was actually familiar with doing small fiber neuropathy tests Because, according to Dr Beauvais, we needed somebody experienced. He wanted somebody experienced because he said alpha-synuclein is patchy in the skin and he would only believe it.
Speaker 3:The test results if it was done correctly. So we were one of the first ones that the memory care center had do this test and it was very, it was very easy. I mean it was just three quick little punch biopsies, much less invasive than the cerebral spinal fluid test. We sent it off and in our case we had. There was a little bit of additional time because there was something in the first set of slides that was atypical so they needed to redo it. I guess I think that particular slide they had to redo.
Speaker 3:But I think within a month or so from the beginning we found we did get the test result and, lo and behold, it was positive and I was absolutely astounded because at this time I really thought no, he's got cortical basal syndrome. Well, it was positive. We actually got the the slides. We could see the PSIN, I guess is what they call it along the nerve fibers, and so Maya was right that my husband had Lewy body dementia. So this is my question I'm trying to figure out why would it be, especially if you go according to the theory, that some dementias start in the skin and in the periphery I mean in the periphery first, and then go to the brain, and some start in the brain and then move down. Why would it be my husband's symptoms started with cognitive issues and he doesn't even have the Parkinson's symptoms very much? Why would it be that the cerebral spinal fluid test that measures, you know, the fluid that bathes the brain, why would that come back negative but the skin tests come back positive?
Speaker 4:Okay, so a great question that I don't have a specific answer for, but let me start with just sort of a general concept of any test. Any test, including our test, has what's called the risk of a false negative. So that means that the test comes back negative, but really the result is not supposed to be negative, and so in our case, to what Dr Beauvais said, a little bit at least, is it can be patchy, and even though we're taking three pieces of skin, when we look inside the skin it's not in every nerve, and so if we just don't happen to see the nerve that contains it, we may report it as negative. We think that probably happens in our hands somewhere between two and five percent of the time. The amprion test, the spinal fluid test, will also have some rate of false negatives. I don't know what they report there as being so. It could just simply have been bad luck. So that's one possibility.
Speaker 4:A second possibility which I tend to think also has some merit is, if you well, you're correct that the spinal fluid is where we like to look as the most direct way of seeing what's happening in the central nervous system.
Speaker 4:You also have to remember that the spinal fluid is made and recirculated about twice a day. So there's new spinal fluid being made all of the time. So you don't get a buildup of the phosphorylated synuclein in the spinal fluid. When we look at the SYN1 test, what we are actually looking at is the accumulation of phosphorylated subnuclein for years and decades. If you think about the fact that in REM behavior disorder we can see phosphorylated subnuclein in the nerves 10 years before a person gets Parkinson's disease, for the next 10, 20, 30, 40 years the entire time that protein is building up inside the nerves. So I like to think about what's happening inside the nerves almost as a sink right, it's just collecting all of this bad protein, because that's what we're seeing happening to the person. The protein is building up in their nerves, it's killing their nerves and it's causing a progressive neurologic disease. The spinal fluid protein just recirculates and repopulates itself all the time.
Speaker 3:So you don't get that kind of effect of seeing years and years of accumulation that we see in the skin. Wow, oh, okay, so that's fascinating. Yeah, I hadn't even thought of something like that. So basically what you're saying is that the alpha-synuclein could have been flushed out of his cerebral spinal fluid and timing just wasn't right. Where in the skin it would have built up over years, so it would have remained there. That's fascinating.
Speaker 4:Correct, correct, yeah, yeah.
Speaker 3:Oh, okay, and then what about the comment? You know we went through a lot of effort to try to find somebody who was familiar with small fiber neuropathy and doing biopsies for that specifically. Do you have cases where sometimes you have inexperienced doctors who tend to miss it a little bit more than maybe an experienced doctor would in the biopsy?
Speaker 4:There's nothing that the doctor who's doing the biopsy can see. It's just three random pieces of skin and in fact we want normal pieces of skin. We don't want you to biopsy moles or freckles or anything. We want normal pieces of skin. So all you have to do is look at a leg or a shoulder and take three normal pieces. So we have dermatologists that do it for us. We have primary care doctors, geriatricians, mainly neurologists.
Speaker 4:Doctors don't like to learn new things, particularly on the fly. We tend to be a little wary of going into a patient's room and going oh this is the first time I've ever done this, let me practice on you. We don't like that anymore. So I think some doctors will just say I don't want to learn how to do the skin biopsy Again. It is incredibly simple. I don't think it's almost impossible to mess it up unless you don't put the piece of skin back in the tube that you're supposed to. And we have lots of training videos. We have representatives that go out to doctors' offices and kind of watch them the first time. So it really can be done by anyone. But the particular sites have nothing to do with whether you have a false negative or a false positive. It's just random nerves that we take from the skin.
Speaker 3:That's interesting, just kind of absorbing what you had to say, so I do want to add to that. One of the things that we really appreciated was that it was affordable for us. It was only I think we only paid like $250 out of pocket because Medicare covered the cost, and so that was really helpful. When we did this freeable spinal fluid test, that was not covered, and so we had to come up with that out of pocket. We love seeing the pictures. I know that sounds a little bit off. Why would you love seeing it? Yeah?
Speaker 1:you're a science geek, so that's, that's yeah, that's why?
Speaker 4:Me too, I know.
Speaker 1:I was like, oh my God, they put a picture of the report in the picture.
Speaker 3:Yeah, yeah, we get it. We were in a in a support group meeting and I held up a picture and some were saying no, no, we don't want to see it. But I was really excited about actually physically being able to see it, because we've had people who have told me specifically that they thought I was making all this up. So this was a very good validation that now, because he does have Lewy body, dementia or you know it was positive. The test was positive and based on his clinical symptoms they're thinking of the five diseases that you talk about he has Lewy body. He is now being evaluated for a clinical trial using a drug and so we would not have been able to qualify if we hadn't have done this test. And also, now that KU Medical Center has seen the result of this, they are now starting to order this for some of their other patients. And just a quick question has Mayo started doing this yet? Do you know?
Speaker 4:I believe they have yes.
Speaker 3:Okay.
Speaker 1:Yeah, wendy's lucky to be to live in Kansas City near Mayo.
Speaker 4:Yeah. So I was going to say you know there's, there's a couple could take one approach to this problem and you could say it doesn't matter, right? We don't have a cure for Alzheimer's, we don't have a cure for Lewy body, we don't have a cure for frontotemporal, for cortical basal, it doesn't really matter. And so I talk about that when I talk to neurologists as the so what question? And if you belong in that, so what camp? If that's the way that your brain works and that's the way you think about these problems, I can't tell you that you're wrong.
Speaker 4:But then you can see why people would say well, why do the test? Because it doesn't matter, right? But then there's the other side of the equation, which is that there is a lot of benefit that comes. So the first for me is a sense of closure. So you and your husband now feel like there's an answer. You don't have to get more spinal fluid tests, you don't have to do more genetic tests, you don't have to do more dad scans, pet scans. So once you have closure, you can see fewer doctors, you can do fewer tests, which I think in the long run is a cost savings, and then hopefully they can find, as you said, some medications to help treat the symptoms in a much more educated way as opposed to just guessing. So that sense of closure is a tremendous benefit for any diagnostic test. The second is that we are now entering an incredibly exciting era for finding treatment, like real treatment for these diseases. In particular, I think the number I think there are now 40 different molecules that are being developed by pharmaceutical companies to block synuclein or inhibit synuclein or get rid of synuclein, and so unless you know as your husband's the perfect example unless you know that that's what your disease is, you can't get into those trials. And in many cases we are now working with the pharmaceutical companies because there have been drugs that people have thought might have worked, that didn't work in clinical trials, and one of our beliefs is they're enrolling the wrong people right.
Speaker 4:Unless you have a specific objective test, you might be putting 30, 40% of the people into a clinical trial that don't have Lewy body or that don't have Parkinson's. And that number is not just a made up number, because we know, for example, from the Mayo Clinic's own data that if they diagnose people with Parkinson's disease and then those people come to autopsy, they were wrong about 30% of the time. If they diagnose people with multiple system atrophy and they come to autopsy, they're wrong about 30% of the time. Lewy body is even more complicated, because there's going to be a large percentage of people that have Lewy body and Alzheimer's.
Speaker 4:When they come to autopsy we see amyloid, tau and synuclein, so that may not work in the right clinical trials. So we have to understand the patients better to get them into the trials so that we can find the drugs that are going to work. So for me, closure is usually important. Symptomatic medication is usually important and then, hopefully, research trials are usually important. Symptomatic medication is usually important and then, hopefully, research trials are usually important and that's where we see the real benefit of this test.
Speaker 1:It weren't 2022. I got to believe that you know things are when we came up with a COVID vaccine and how short. So I appreciate any and all doctors and medical professionals who are trying to tackle this disease and help us, because Curry always says on the podcast how he was just relieved to get diagnosed, even with Lewy body. We're going to stop here for a bit and when we come back next week we're going to pick up with Dr Levine, who will update us on the progress of a synuclein-1 study funded by the NIH.
Speaker 2:Thank you again to Dr Levine and to our guest helper, wendy Kogan. Remember you can email us with suggestions on what you'd like us to discuss on future episodes, or you can ask any questions you have, and we'll sure do our best to help get you the best answer possible.
Speaker 1:If you're interested in helping us as a volunteer and advocate, please send us an email at louisbodyrollercoaster at gmailcom, because the more people who reach out, the more people we can help.
Speaker 2:And if you'd like to learn how you can be a supporter of the podcast, please see the episode notes, as we post information on that there. Of the podcast. Please see the episode notes as we post information on that there. Well, folks, thanks again for joining us Until next week. This is Linda and Curry signing off.