January 21, 2025 • 19 mins
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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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Hello and welcome to our podcast about living on the
Lewy Body Roller Coaster apodcast for Lewy Body Dementia
patients and their families.
Presented by Lewy Body patientsand their families.
Speaker 2 (00:13):
You will hear firsthand the ups and downs and
twists and turns of Lewy BodyDementia From families directly
affected.
We'll share our support andexperiences on all things Lewy
Body.
Speaker 1 (00:25):
We're your hosts, Linda and Curry.
I have a loved one with LewyBody Dementia.
Speaker 2 (00:30):
And I am living with Lewy Body Dementia.
Speaker 1 (00:33):
Let's get started.
All right.
So we're back for week two withDr Levine and Wendy Kogan
talking about the SYN1 CND lifesciences test.
So, Wendy, let's jump in andget your help with the next set
(00:56):
of questions.
Speaker 3 (00:58):
Okay, last time I shared a little bit of history
on my husband's diagnosis withLewy body dementia and this week
I'm going to talk a little bitabout how it evolved, his
specific disease and some of thecomplexities that came into
(01:19):
play and how we work with C&DLife Sciences to get a little
bit more clarity.
So, as I talked about, myhusband was diagnosed with Lewy
body dementia in 2020.
At Mayo he had a positive DATscan.
He had a neuropsychologicaltesting that was classic of Lewy
(01:41):
body dementia.
Other scans showed that hedidn't have any Alzheimer's
involvement and his clinicalsymptoms were similar to what
Lewy body dementia patients have.
However, some things he did nothave classically as a Lewy body
dementia patient and I reallyshouldn't say that because it
(02:02):
does vary Symptoms vary by eachperson but he still does not
have hallucinations.
He does not have the REM sleepbehavior disorder.
He has periodic limb movementdisorder, which is a different
type of sleeping disorder, buthe doesn't act out his dreams
and he only has a little bit nowof Parkinsonism.
(02:22):
So he has a little bit of anaction tremor at times and,
again, he didn't haveAlzheimer's.
Well, he started to morph abouta year ago and we were seeing
apraxia, which means clumsinesswhen he tried to use his
(02:45):
dominant hand, which is on theleft.
He has issues with, you know,sensing things with that hand,
more rigidity on that side, kindof unilateral.
All this is on his left sidebut in his scans most of his
involvement is on the right sideof his brain.
But so then we began to think,you know, he was starting to
(03:10):
evolve to look like afrontotemporal dementia called
cortical basal syndrome.
And so we were a little bitperplexed and we had heard about
the cerebral spinal fluid testfor alpha-synuclein, about the
cerebral spinal fluid test foralpha-synuclein.
So we went to our local doctorat the University of Kansas
(03:30):
Medical Center, because we livein Kansas City and he went ahead
and he ordered the cerebralspinal 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 bodydisease, but he also has
(03:53):
cortical basal, or maybe he hascortical basal syndrome.
And we saw a movement disorderspecialist.
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 Mayothinks he has Lewy body dementia
, but he does have, you know hehas cortical basal syndrome.
So we went back to Dr Mayo andDr Mayo, who is an expert in
(04:18):
Lewy body dementia, he says I'mnot convinced.
He said I am not convinced thatyour husband doesn't have Lewy
body dementia.
And he said there's um, and Iasked well, I said I heard about
a skin test.
Uh, cnd life sciences, have youever heard of them?
He goes, yes, he goes.
He has Mayo at the time, um, Ithink they're planning on
(04:38):
actually using the test.
I guess, um, we can find outlater if they've actually
started.
But basically they said that.
Um, basically Dr Beauvais saidif you get a negative CND life
sciences test, then we'll callit frontal temporal.
Meanwhile we did all sorts ofgenetic testing for frontal
(05:01):
temporal dimension.
All came back negative.
So went back to KU.
Our particular neurologist hadnever used CND Life Sciences.
So I called CND Life Sciencesand I said hey, do you know any
doctors in Kansas City who havedone this?
We found a doctor who wasactually familiar with doing
(05:22):
small fiber neuropathy testsBecause, according to Dr
Beauvais, we needed somebodyexperienced.
He wanted somebody experiencedbecause he said alpha-synuclein
is patchy in the skin and hewould only believe it.
The test results if it was donecorrectly.
So we were one of the firstones that the memory care center
(05:46):
had do this test and it wasvery, it was very easy.
I mean it was just three quicklittle punch biopsies, much less
invasive than the cerebralspinal fluid test.
We sent it off and in our casewe had.
There was a little bit ofadditional time because there
(06:09):
was something in the first setof slides that was atypical so
they needed to redo it.
I guess I think that particularslide they had to redo.
But I think within a month or sofrom the beginning we found we
did get the test result and, loand behold, it was positive and
(06:30):
I was absolutely astoundedbecause at this time I really
thought no, he's got corticalbasal syndrome.
Well, it was positive.
We actually got the the slides.
We could see the PSIN, I guessis what they call it along the
nerve fibers, and so Maya wasright that my husband had Lewy
(06:55):
body dementia.
So this is my question I'mtrying to figure out why would
it be, especially if you goaccording to the theory, that
some dementias start in the skinand in the periphery I mean in
the periphery first, and then goto the brain, and some start in
(07:17):
the brain and then move down.
Why would it be my husband'ssymptoms started with cognitive
issues and he doesn't even havethe Parkinson's symptoms very
much?
Why would it be that thecerebral spinal fluid test that
measures, you know, the fluidthat bathes the brain, why would
(07:38):
that come back negative but theskin tests come back positive?
Speaker 4 (07:51):
Okay, so a great question that I don't have a
specific answer for, but let mestart 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 testcomes back negative, but really
the result is not supposed to benegative, and so in our case,
to what Dr Beauvais said, alittle bit at least, is it can
(08:14):
be patchy, and even though we'retaking three pieces of skin,
when we look inside the skinit's not in every nerve, and so
if we just don't happen to seethe nerve that contains it, we
may report it as negative.
We think that probably happensin our hands somewhere between
two and five percent of the time.
The amprion test, the spinalfluid test, will also have some
(08:36):
rate of false negatives.
I don't know what they reportthere as being so.
It could just simply have beenbad luck.
So that's one possibility.
A second possibility which Itend to think also has some
merit is, if you well, you'recorrect that the spinal fluid is
where we like to look as themost direct way of seeing what's
(08:56):
happening in the centralnervous system.
You also have to remember thatthe spinal fluid is made and
recirculated about twice a day.
So there's new spinal fluidbeing made all of the time.
So you don't get a buildup ofthe phosphorylated synuclein in
the spinal fluid.
(09:16):
When we look at the SYN1 test,what we are actually looking at
is the accumulation ofphosphorylated subnuclein for
years and decades.
If you think about the factthat in REM behavior disorder we
can see phosphorylatedsubnuclein in the nerves 10
years before a person getsParkinson's disease, for the
(09:42):
next 10, 20, 30, 40 years theentire time that protein is
building up inside the nerves.
So I like to think about what'shappening inside the nerves
almost as a sink right, it'sjust collecting all of this bad
protein, because that's whatwe're seeing happening to the
person.
The protein is building up intheir nerves, it's killing their
(10:03):
nerves and it's causing aprogressive neurologic disease.
The spinal fluid protein justrecirculates and repopulates
itself all the time.
Speaker 3 (10:20):
So you don't get that kind of effect of seeing years
and years of accumulation thatwe see in the skin.
Wow, oh, okay, so that'sfascinating.
Yeah, I hadn't even thought ofsomething like that.
So basically what you're sayingis that the alpha-synuclein
could have been flushed out ofhis cerebral spinal fluid and
timing just wasn't right.
Where in the skin it would havebuilt up over years, so it
(10:44):
would have remained there.
That's fascinating.
Speaker 4 (10:46):
Correct, correct, yeah, yeah.
Speaker 3 (10:48):
Oh, okay, and then what about the comment?
You know we went through a lotof effort to try to find
somebody who was familiar withsmall fiber neuropathy and doing
biopsies for that specifically.
Do you have cases wheresometimes you have inexperienced
doctors who tend to miss it alittle bit more than maybe an
(11:12):
experienced doctor would in thebiopsy?
Speaker 4 (11:15):
There's nothing that the doctor who's doing the
biopsy can see.
It's just three random piecesof skin and in fact we want
normal pieces of skin.
We don't want you to biopsymoles or freckles or anything.
We want normal pieces of skin.
So all you have to do is lookat a leg or a shoulder and take
three normal pieces.
So we have dermatologists thatdo it for us.
(11:36):
We have primary care doctors,geriatricians, mainly
neurologists.
Doctors don't like to learn newthings, particularly on the fly.
We tend to be a little wary ofgoing into a patient's room and
going oh this is the first timeI've ever done this, let me
practice on you.
We don't like that anymore.
(11:57):
So I think some doctors willjust say I don't want to learn
how to do the skin biopsy Again.
It is incredibly simple.
I don't think it's almostimpossible to mess it up unless
you don't put the piece of skinback in the tube that you're
supposed to.
And we have lots of trainingvideos.
We have representatives that goout to doctors' offices and
(12:19):
kind of watch them the firsttime.
So it really can be done byanyone.
But the particular sites havenothing to do with whether you
have a false negative or a falsepositive.
It's just random nerves that wetake from the skin.
Speaker 3 (12:33):
That's interesting, just kind of absorbing what you
had to say, so I do want to addto that.
One of the things that wereally appreciated was that it
was affordable for us.
It was only I think we onlypaid like $250 out of pocket
(12:56):
because Medicare covered thecost, and so that was really
helpful.
When we did this freeablespinal fluid test, that was not
covered, and so we had to comeup with that out of pocket.
We love seeing the pictures.
I know that sounds a little bitoff.
Why would you love seeing it?
Yeah?
Speaker 1 (13:17):
you're a science geek , so that's, that's yeah, that's
why?
Speaker 4 (13:20):
Me too, I know.
Speaker 1 (13:22):
I was like, oh my God , they put a picture of the
report in the picture.
Speaker 3 (13:24):
Yeah, yeah, we get it .
We were in a in a support groupmeeting and I held up a picture
and some were saying no, no, wedon't want to see it.
But I was really excited aboutactually physically being able
to see it, because we've hadpeople who have told me
specifically that they thought Iwas making all this up.
So this was a very goodvalidation that now, because he
(13:53):
does have Lewy body, dementia oryou know it was positive.
The test was positive and basedon his clinical symptoms
they're thinking of the fivediseases that you talk about he
has Lewy body.
He is now being evaluated for aclinical trial using a drug and
so we would not have been ableto qualify if we hadn't have
(14:17):
done this test.
And also, now that KU MedicalCenter has seen the result of
this, they are now starting toorder this for some of their
other patients.
And just a quick question hasMayo started doing this yet?
Do you know?
Speaker 4 (14:35):
I believe they have yes.
Speaker 3 (14:36):
Okay.
Speaker 1 (14:37):
Yeah, wendy's lucky to be to live in Kansas City
near Mayo.
Speaker 4 (14:54):
Yeah.
So I was going to say you knowthere's, there's a couple could
take one approach to thisproblem and you could say it
doesn't matter, right?
We don't have a cure forAlzheimer's, we don't have a
cure for Lewy body, we don'thave a cure for frontotemporal,
for cortical basal, it doesn'treally matter.
And so I talk about that when Italk to neurologists as the so
(15:15):
what question?
And if you belong in that, sowhat camp?
If that's the way that yourbrain works and that's the way
you think about these problems,I can't tell you that you're
wrong.
But then you can see why peoplewould say well, why do the test?
Because it doesn't matter,right?
But then there's the other sideof the equation, which is that
there is a lot of benefit thatcomes.
(15:35):
So the first for me is a senseof closure.
So you and your husband nowfeel like there's an answer.
You don't have to get morespinal 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, youcan see fewer doctors, you can
do fewer tests, which I think inthe long run is a cost savings,
(15:55):
and then hopefully they canfind, as you said, some
medications to help treat thesymptoms in a much more educated
way as opposed to just guessing.
So that sense of closure is atremendous benefit for any
diagnostic test.
The second is that we are nowentering an incredibly exciting
(16:16):
era for finding treatment, likereal treatment for these
diseases.
In particular, I think thenumber I think there are now 40
different molecules that arebeing developed by
pharmaceutical companies toblock synuclein or inhibit
synuclein or get rid ofsynuclein, and so unless you
(16:37):
know as your husband's theperfect example unless you know
that that's what your disease is, you can't get into those
trials.
And in many cases we are nowworking with the pharmaceutical
companies because there havebeen drugs that people have
thought might have worked, thatdidn't work in clinical trials,
and one of our beliefs isthey're enrolling the wrong
(16:57):
people right.
Unless you have a specificobjective test, you might be
putting 30, 40% of the peopleinto a clinical trial that don't
have Lewy body or that don'thave Parkinson's.
And that number is not just amade up number, because we know,
for example, from the MayoClinic's own data that if they
diagnose people with Parkinson'sdisease and then those people
(17:18):
come to autopsy, they were wrongabout 30% of the time.
If they diagnose people withmultiple system atrophy and they
come to autopsy, they're wrongabout 30% of the time.
Lewy body is even morecomplicated, because there's
going to be a large percentageof people that have Lewy body
and Alzheimer's.
When they come to autopsy we seeamyloid, tau and synuclein, so
(17:38):
that may not work in the rightclinical trials.
So we have to understand thepatients better to get them into
the trials so that we can findthe drugs that are going to work
.
So for me, closure is usuallyimportant.
Symptomatic medication isusually important and then,
hopefully, research trials areusually important.
Symptomatic medication isusually important and then,
hopefully, research trials areusually important and that's
where we see the real benefit ofthis test.
Speaker 1 (18:04):
It weren't 2022.
I got to believe that you knowthings are when we came up with
a COVID vaccine and how short.
So I appreciate any and alldoctors and medical
professionals who are trying totackle this disease and help us,
because Curry always says onthe podcast how he was just
(18:27):
relieved to get diagnosed, evenwith Lewy body.
We're going to stop here for abit and when we come back next
week we're going to pick up withDr Levine, who will update us
on the progress of a synuclein-1study funded by the NIH.
Speaker 2 (18:44):
Thank you again to Dr Levine and to our guest helper,
wendy Kogan.
Remember you can email us withsuggestions on what you'd like
us to discuss on future episodes, or you can ask any questions
you have, and we'll sure do ourbest to help get you the best
answer possible.
Speaker 1 (18:59):
If you're interested in helping us as a volunteer and
advocate, please send us anemail at louisbodyrollercoaster
at gmailcom, because the morepeople who reach out, the more
people we can help.
Speaker 2 (19:09):
And if you'd like to learn how you can be a supporter
of the podcast, please see theepisode notes, as we post
information on that there.
Of the podcast.
Please see the episode notes aswe post information on that
there.
Well, folks, thanks again forjoining us Until next week.
This is Linda and Curry signingoff.
Hello and welcome to our podcast about living on the
Lewy Body Roller Coaster apodcast for Lewy Body Dementia
patients and their families.
Presented by Lewy Body patientsand their families.
Speaker 2 (00:13):
You will hear firsthand the ups and downs and
twists and turns of Lewy BodyDementia From families directly
affected.
We'll share our support andexperiences on all things Lewy
Body.
Speaker 1 (00:25):
We're your hosts, Linda and Curry.
I have a loved one with LewyBody Dementia.
Speaker 2 (00:30):
And I am living with Lewy Body Dementia.
Speaker 1 (00:33):
Let's get started.
All right.
So we're back for week two withDr Levine and Wendy Kogan
talking about the SYN1 CND lifesciences test.
So, Wendy, let's jump in andget your help with the next set
(00:56):
of questions.
Speaker 3 (00:58):
Okay, last time I shared a little bit of history
on my husband's diagnosis withLewy body dementia and this week
I'm going to talk a little bitabout how it evolved, his
specific disease and some of thecomplexities that came into
(01:19):
play and how we work with C&DLife Sciences to get a little
bit more clarity.
So, as I talked about, myhusband was diagnosed with Lewy
body dementia in 2020.
At Mayo he had a positive DATscan.
He had a neuropsychologicaltesting that was classic of Lewy
(01:41):
body dementia.
Other scans showed that hedidn't have any Alzheimer's
involvement and his clinicalsymptoms were similar to what
Lewy body dementia patients have.
However, some things he did nothave classically as a Lewy body
dementia patient and I reallyshouldn't say that because it
(02:02):
does vary Symptoms vary by eachperson but he still does not
have hallucinations.
He does not have the REM sleepbehavior disorder.
He has periodic limb movementdisorder, which is a different
type of sleeping disorder, buthe doesn't act out his dreams
and he only has a little bit nowof Parkinsonism.
(02:22):
So he has a little bit of anaction tremor at times and,
again, he didn't haveAlzheimer's.
Well, he started to morph abouta year ago and we were seeing
apraxia, which means clumsinesswhen he tried to use his
(02:45):
dominant hand, which is on theleft.
He has issues with, you know,sensing things with that hand,
more rigidity on that side, kindof unilateral.
All this is on his left sidebut in his scans most of his
involvement is on the right sideof his brain.
But so then we began to think,you know, he was starting to
(03:10):
evolve to look like afrontotemporal dementia called
cortical basal syndrome.
And so we were a little bitperplexed and we had heard about
the cerebral spinal fluid testfor alpha-synuclein, about the
cerebral spinal fluid test foralpha-synuclein.
So we went to our local doctorat the University of Kansas
(03:30):
Medical Center, because we livein Kansas City and he went ahead
and he ordered the cerebralspinal 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 bodydisease, but he also has
(03:53):
cortical basal, or maybe he hascortical basal syndrome.
And we saw a movement disorderspecialist.
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 Mayothinks he has Lewy body dementia
, but he does have, you know hehas cortical basal syndrome.
So we went back to Dr Mayo andDr Mayo, who is an expert in
(04:18):
Lewy body dementia, he says I'mnot convinced.
He said I am not convinced thatyour husband doesn't have Lewy
body dementia.
And he said there's um, and Iasked well, I said I heard about
a skin test.
Uh, cnd life sciences, have youever heard of them?
He goes, yes, he goes.
He has Mayo at the time, um, Ithink they're planning on
(04:38):
actually using the test.
I guess, um, we can find outlater if they've actually
started.
But basically they said that.
Um, basically Dr Beauvais saidif you get a negative CND life
sciences test, then we'll callit frontal temporal.
Meanwhile we did all sorts ofgenetic testing for frontal
(05:01):
temporal dimension.
All came back negative.
So went back to KU.
Our particular neurologist hadnever used CND Life Sciences.
So I called CND Life Sciencesand I said hey, do you know any
doctors in Kansas City who havedone this?
We found a doctor who wasactually familiar with doing
(05:22):
small fiber neuropathy testsBecause, according to Dr
Beauvais, we needed somebodyexperienced.
He wanted somebody experiencedbecause he said alpha-synuclein
is patchy in the skin and hewould only believe it.
The test results if it was donecorrectly.
So we were one of the firstones that the memory care center
(05:46):
had do this test and it wasvery, it was very easy.
I mean it was just three quicklittle punch biopsies, much less
invasive than the cerebralspinal fluid test.
We sent it off and in our casewe had.
There was a little bit ofadditional time because there
(06:09):
was something in the first setof slides that was atypical so
they needed to redo it.
I guess I think that particularslide they had to redo.
But I think within a month or sofrom the beginning we found we
did get the test result and, loand behold, it was positive and
(06:30):
I was absolutely astoundedbecause at this time I really
thought no, he's got corticalbasal syndrome.
Well, it was positive.
We actually got the the slides.
We could see the PSIN, I guessis what they call it along the
nerve fibers, and so Maya wasright that my husband had Lewy
(06:55):
body dementia.
So this is my question I'mtrying to figure out why would
it be, especially if you goaccording to the theory, that
some dementias start in the skinand in the periphery I mean in
the periphery first, and then goto the brain, and some start in
(07:17):
the brain and then move down.
Why would it be my husband'ssymptoms started with cognitive
issues and he doesn't even havethe Parkinson's symptoms very
much?
Why would it be that thecerebral spinal fluid test that
measures, you know, the fluidthat bathes the brain, why would
(07:38):
that come back negative but theskin tests come back positive?
Speaker 4 (07:51):
Okay, so a great question that I don't have a
specific answer for, but let mestart 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 testcomes back negative, but really
the result is not supposed to benegative, and so in our case,
to what Dr Beauvais said, alittle bit at least, is it can
(08:14):
be patchy, and even though we'retaking three pieces of skin,
when we look inside the skinit's not in every nerve, and so
if we just don't happen to seethe nerve that contains it, we
may report it as negative.
We think that probably happensin our hands somewhere between
two and five percent of the time.
The amprion test, the spinalfluid test, will also have some
(08:36):
rate of false negatives.
I don't know what they reportthere as being so.
It could just simply have beenbad luck.
So that's one possibility.
A second possibility which Itend to think also has some
merit is, if you well, you'recorrect that the spinal fluid is
where we like to look as themost direct way of seeing what's
(08:56):
happening in the centralnervous system.
You also have to remember thatthe spinal fluid is made and
recirculated about twice a day.
So there's new spinal fluidbeing made all of the time.
So you don't get a buildup ofthe phosphorylated synuclein in
the spinal fluid.
(09:16):
When we look at the SYN1 test,what we are actually looking at
is the accumulation ofphosphorylated subnuclein for
years and decades.
If you think about the factthat in REM behavior disorder we
can see phosphorylatedsubnuclein in the nerves 10
years before a person getsParkinson's disease, for the
(09:42):
next 10, 20, 30, 40 years theentire time that protein is
building up inside the nerves.
So I like to think about what'shappening inside the nerves
almost as a sink right, it'sjust collecting all of this bad
protein, because that's whatwe're seeing happening to the
person.
The protein is building up intheir nerves, it's killing their
(10:03):
nerves and it's causing aprogressive neurologic disease.
The spinal fluid protein justrecirculates and repopulates
itself all the time.
Speaker 3 (10:20):
So you don't get that kind of effect of seeing years
and years of accumulation thatwe see in the skin.
Wow, oh, okay, so that'sfascinating.
Yeah, I hadn't even thought ofsomething like that.
So basically what you're sayingis that the alpha-synuclein
could have been flushed out ofhis cerebral spinal fluid and
timing just wasn't right.
Where in the skin it would havebuilt up over years, so it
(10:44):
would have remained there.
That's fascinating.
Speaker 4 (10:46):
Correct, correct, yeah, yeah.
Speaker 3 (10:48):
Oh, okay, and then what about the comment?
You know we went through a lotof effort to try to find
somebody who was familiar withsmall fiber neuropathy and doing
biopsies for that specifically.
Do you have cases wheresometimes you have inexperienced
doctors who tend to miss it alittle bit more than maybe an
(11:12):
experienced doctor would in thebiopsy?
Speaker 4 (11:15):
There's nothing that the doctor who's doing the
biopsy can see.
It's just three random piecesof skin and in fact we want
normal pieces of skin.
We don't want you to biopsymoles or freckles or anything.
We want normal pieces of skin.
So all you have to do is lookat a leg or a shoulder and take
three normal pieces.
So we have dermatologists thatdo it for us.
(11:36):
We have primary care doctors,geriatricians, mainly
neurologists.
Doctors don't like to learn newthings, particularly on the fly.
We tend to be a little wary ofgoing into a patient's room and
going oh this is the first timeI've ever done this, let me
practice on you.
We don't like that anymore.
(11:57):
So I think some doctors willjust say I don't want to learn
how to do the skin biopsy Again.
It is incredibly simple.
I don't think it's almostimpossible to mess it up unless
you don't put the piece of skinback in the tube that you're
supposed to.
And we have lots of trainingvideos.
We have representatives that goout to doctors' offices and
(12:19):
kind of watch them the firsttime.
So it really can be done byanyone.
But the particular sites havenothing to do with whether you
have a false negative or a falsepositive.
It's just random nerves that wetake from the skin.
Speaker 3 (12:33):
That's interesting, just kind of absorbing what you
had to say, so I do want to addto that.
One of the things that wereally appreciated was that it
was affordable for us.
It was only I think we onlypaid like $250 out of pocket
(12:56):
because Medicare covered thecost, and so that was really
helpful.
When we did this freeablespinal fluid test, that was not
covered, and so we had to comeup with that out of pocket.
We love seeing the pictures.
I know that sounds a little bitoff.
Why would you love seeing it?
Yeah?
Speaker 1 (13:17):
you're a science geek , so that's, that's yeah, that's
why?
Speaker 4 (13:20):
Me too, I know.
Speaker 1 (13:22):
I was like, oh my God , they put a picture of the
report in the picture.
Speaker 3 (13:24):
Yeah, yeah, we get it .
We were in a in a support groupmeeting and I held up a picture
and some were saying no, no, wedon't want to see it.
But I was really excited aboutactually physically being able
to see it, because we've hadpeople who have told me
specifically that they thought Iwas making all this up.
So this was a very goodvalidation that now, because he
(13:53):
does have Lewy body, dementia oryou know it was positive.
The test was positive and basedon his clinical symptoms
they're thinking of the fivediseases that you talk about he
has Lewy body.
He is now being evaluated for aclinical trial using a drug and
so we would not have been ableto qualify if we hadn't have
(14:17):
done this test.
And also, now that KU MedicalCenter has seen the result of
this, they are now starting toorder this for some of their
other patients.
And just a quick question hasMayo started doing this yet?
Do you know?
Speaker 4 (14:35):
I believe they have yes.
Speaker 3 (14:36):
Okay.
Speaker 1 (14:37):
Yeah, wendy's lucky to be to live in Kansas City
near Mayo.
Speaker 4 (14:54):
Yeah.
So I was going to say you knowthere's, there's a couple could
take one approach to thisproblem and you could say it
doesn't matter, right?
We don't have a cure forAlzheimer's, we don't have a
cure for Lewy body, we don'thave a cure for frontotemporal,
for cortical basal, it doesn'treally matter.
And so I talk about that when Italk to neurologists as the so
(15:15):
what question?
And if you belong in that, sowhat camp?
If that's the way that yourbrain works and that's the way
you think about these problems,I can't tell you that you're
wrong.
But then you can see why peoplewould say well, why do the test?
Because it doesn't matter,right?
But then there's the other sideof the equation, which is that
there is a lot of benefit thatcomes.
(15:35):
So the first for me is a senseof closure.
So you and your husband nowfeel like there's an answer.
You don't have to get morespinal 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, youcan see fewer doctors, you can
do fewer tests, which I think inthe long run is a cost savings,
(15:55):
and then hopefully they canfind, as you said, some
medications to help treat thesymptoms in a much more educated
way as opposed to just guessing.
So that sense of closure is atremendous benefit for any
diagnostic test.
The second is that we are nowentering an incredibly exciting
(16:16):
era for finding treatment, likereal treatment for these
diseases.
In particular, I think thenumber I think there are now 40
different molecules that arebeing developed by
pharmaceutical companies toblock synuclein or inhibit
synuclein or get rid ofsynuclein, and so unless you
(16:37):
know as your husband's theperfect example unless you know
that that's what your disease is, you can't get into those
trials.
And in many cases we are nowworking with the pharmaceutical
companies because there havebeen drugs that people have
thought might have worked, thatdidn't work in clinical trials,
and one of our beliefs isthey're enrolling the wrong
(16:57):
people right.
Unless you have a specificobjective test, you might be
putting 30, 40% of the peopleinto a clinical trial that don't
have Lewy body or that don'thave Parkinson's.
And that number is not just amade up number, because we know,
for example, from the MayoClinic's own data that if they
diagnose people with Parkinson'sdisease and then those people
(17:18):
come to autopsy, they were wrongabout 30% of the time.
If they diagnose people withmultiple system atrophy and they
come to autopsy, they're wrongabout 30% of the time.
Lewy body is even morecomplicated, because there's
going to be a large percentageof people that have Lewy body
and Alzheimer's.
When they come to autopsy we seeamyloid, tau and synuclein, so
(17:38):
that may not work in the rightclinical trials.
So we have to understand thepatients better to get them into
the trials so that we can findthe drugs that are going to work
.
So for me, closure is usuallyimportant.
Symptomatic medication isusually important and then,
hopefully, research trials areusually important.
Symptomatic medication isusually important and then,
hopefully, research trials areusually important and that's
where we see the real benefit ofthis test.
Speaker 1 (18:04):
It weren't 2022.
I got to believe that you knowthings are when we came up with
a COVID vaccine and how short.
So I appreciate any and alldoctors and medical
professionals who are trying totackle this disease and help us,
because Curry always says onthe podcast how he was just
(18:27):
relieved to get diagnosed, evenwith Lewy body.
We're going to stop here for abit and when we come back next
week we're going to pick up withDr Levine, who will update us
on the progress of a synuclein-1study funded by the NIH.
Speaker 2 (18:44):
Thank you again to Dr Levine and to our guest helper,
wendy Kogan.
Remember you can email us withsuggestions on what you'd like
us to discuss on future episodes, or you can ask any questions
you have, and we'll sure do ourbest to help get you the best
answer possible.
Speaker 1 (18:59):
If you're interested in helping us as a volunteer and
advocate, please send us anemail at louisbodyrollercoaster
at gmailcom, because the morepeople who reach out, the more
people we can help.
Speaker 2 (19:09):
And if you'd like to learn how you can be a supporter
of the podcast, please see theepisode notes, as we post
information on that there.
Of the podcast.
Please see the episode notes aswe post information on that
there.
Well, folks, thanks again forjoining us Until next week.
This is Linda and Curry signingoff.
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