alzheimers news-its not my drug

ALZHEIMERS NEWS-ITS NOT MY DRUG

several folks contacted me yesterday asking if the drug that was in the news was my drug
it was on a lot of tv channels and on my newsfeeds yesterday and today

that drug is called ban2401
my drug is called aducanumab
both are made by biogen


ban2401 attacks the amyloid at a particular site called protofibrils
aducanumab attacks the amyloid at a different site
both drugs grabs the amyloid and removes it
both are antibodies against the amyloid given as an injection or an infusion

ban2401 is about 2-5 years behind my drug aducanumab
ban2401 is in phase 2 studies
aducanumab is in phase 3 studies

the aducanumab phase 3 study ends for me after my next 2 infusions in 6 weeks
others in my study are further behind me
there are about 1200+ of us in the aducanumab study

it should be all finished in 2019 with the final results out probably 2020
it could be on the market the following year or two pending fda approval
ban2401 wont be available if it continues to do well until 2021+

dont worry starting in october i begin to definitely receive the aducanumab and not the placebo and will receive it for another 18 months or longer
that should carry me into 2020 when the results come out
if it doesnt work then ill stop it
if it does work then ill probably stay on it since they usually will continue the studies for a long term after that
ie
im covered for now

ban2401 in this phase 2 study didnt work except at the higher doses
it worked best in folks like me with the apoe 4 gene
this higher dose study has only about 200-300 folks in it
the drug in the higher dose not only removed the amyloid
but
the patients memory improved by 30% on the memory tests they used


aducanumab results from nature

my drug aducanumab in its phase 1 study on 100+ patients also worked best at the higher doses
the amyloid was mostly removed
the higher the dose the more removed
also all in the phase 1 study had improvement in their memories
except
those who received the placebo
it always sucks to be in the placebo group

so unlike the ban2401 drug it worked at the lower doses just not as strongly
the folks in the phase 1 study of aducanumab have now been followed for over 5 years
they have continued to have less amyloid in the brain and have showed continued improvement in their memory

my aducanumab drug also has higher side effects at the higher doses
in fact in the phase 3 study they dropped the highest dose because of the side effects
the biggest side effect is micorobleeds that may occur as the amyloid plaques are removed
a side effect that most of us with this disease would readily accept
but
the fda doesnt like them

when my drug aducanumab publishes its results next year or next expect the same hype that the ban2401 is getting now
the difference is that it will be available first for treatment for alzheimers disease

it probably will be used in folks with prealzheimers disease
prealzheimers disease is where many of you are
you dont have symptoms but your amyloid pet scans and or your spinal fluid for amyloid are positive
you just dont know that yet

it will be also used in folks like me with the diagnosis of mild cognitive impairment or those with mild alzheimers
it probably wont be used in moderate to severe alzheimers since by then so much damage has been done that little gain will come from using this expensive drug on those patients

getting diagnosed early is going to be important in the near future if you are going to be able to stop or slow down this disease

in the meantime be aggressive in taking care of your health

the early the better is the rule

so thats my answer to the question
is this your drug

the organicgreen doctor

alzheimers news-im sleepy

ALZHEIMERS NEWS-IM SLEEPY

i seem to say that to my wife she twice a day
once after lunch
the other
after supper

i do notice its worse in regards the after lunch sleepiness
a week after my infusions i get monthly in the
aducanumab study at ucla

whether or not its really that im not sure
i guess one day if i find out im getting the placebo
then ill know those infusions didnt do it
it maybe was
a placebo effect

sleep is important in regards to developing alzheimers disease
as you are sleeping there are garbage cells that are
programmed to go into the brain and clean up any debris
that has accumulated
this seems to happen during your deep sleep
this usually requires a good 7-8 hours of sleep for
all this to happen

part of this debris that accumulates is the bad beta amyloid
that is produced and builds up in the brain
its that bad beta amyloid that kills brain cells as it forms
plaques of amyloid
this is what is thought to be the cause of alzheimers disease
the accumulation of amyloid
the lack of adequate sleep exacerbates this
it may not be the only cause but it makes it worse

so a good restful adequate sleep is important

now researchers in a recent article found that this excessive
daytime sleepiness may indicate an individuals risk for
alzheimers disease
man am i in trouble

in this mayo clinic study following 70 year olds with excessive
daytime sleepiness for seven years with amyloid brain scans
they found 22% of them accumulated the amyloid
in places where alzheimers disease usually starts in the brain

so does the excessive sleepiness cause the accumulation
or
does the accumulation cause the excessive sleepiness
the chicken or the egg theory

so
get adequate sleep please
the early in life you start the better

i wonder what is going to happen in all those young folks
who dont get enough sleep due to cell phones computers
excessive lights working etc
just ask any high school or middle school teacher about this

they are doing a long term experiment on themselves that will give us
an answer in 40-50 years

im hoping it wont happen to them

the organicgreen doctor

alzheimers news-26 weeks in

ALZHEIMERS NEWS-26 WEEKS IN

today marks the 26th week into the biogen aducanumab study
for hopefully slowing down this disease
for me for now if i didnt get the placebo

for the rest of you if this stuff actually works
it will be available to you eventually

eg those of you who have  matching dna to mine
this may be a drug you will get
some of you even before you have symptoms

thats where all this is heading

this 6 month testing today is important
for this drug this infusion to work
it has to do two things

first   it has to remove the bad beta amyloid from the brain
and
keep new amyloid from being deposited

second   the memory testing has to show no change or
an improvement in memory

this second one has to happen or this stuff isnt helping
the first one well that happened in everyone who has had this
in early studies

so for me
this is an important day
although i will not ever see the results
but
when the memory tests are done
since i have had enough of them
and
have actually administered them to folks
i know how i do when i take them

first
they isolate us my wife she and i
like you know when the police isolate suspects
well i guess thats not a good example

they ask her questions about how i am doing
has she noticed things etc
then
they ask me similar questions to compare our answers

we my wife she and i always joke
i do better than she does on some of these

then
its several different memory tests that are done
similar to the moca and mmse that are done in a lot
of doctors office
i scored low 7 years ago but have improved over that time

when all these are put together
they are compared to my memory testing done over 6 months ago

if i got the real stuff they should have improved
if this stuff works
and
if i got the real stuff


then after lunch
i get the pet scan called the amyvid scan
it tests for the beta amyloid thats accumulated there
the scan on the left above is positive
the scan on the right above is negative

i also decided to do a substudy where they do more pet scans
than on the other study subjects
even though like the memory tests ill never see the results
the more data they can get the better the results are at the end
of the study

so
if this stuff is working if i got the real stuff
then
my pet scan will look better
at the end of the study
it should be all clear

again though
the memory has to not get worse or get better
for this drug to be a success

the amyvid scan uses a radioactive substance to highlight
the beta amyloid in the brain
if its all red like in the initial scan above on the left
then the scan is positive
if its still red after the study is done
then the stuff either it didnt work or you got the placebo

everyone in the study has a scan that is positive at the beginning

if its not red after getting the infusions then it looks like
the scan on the right
it means the amyloid is all gone
thats right its all gone
initial testing in other studies show this stuff removes the amyloid

this is an important visit
as in one year this part of the study ends

when they look at all the results then
if it appears to be working and there are no significant side effects
then
all of us will get the real drug infusions for another 3 years

what i hope is
i got the real drug to begin with and not the placebo
i think i may be getting the real drug based on some of my side effects
then
i hope this stuff really works

help us find a cure

my walks


alzheimers texas williamson county walk september 23rd


santa barbara walk to end alzheimers october 28th

the organicgreen doctor

alzheimers news-the final answer is....

ALZHEIMERS NEWS-THE FINAL ANSWER IS....

for those who dont know
my story
here is a brief summary

my mother and younger brother died from the disease
my father may have had it when he died
my older brother probably has early alzheimers disease

8 years ago i had a normal memory test when i was seeking my
long term insurance
6 years ago while seeking to be in the normal group for a large
research study called adni i was found to have short term memory loss
on memory testing

this is when i quit working and started the alzheimers drug
aricept or donepezil which slows down the symptoms
but doesnt stop the disease process
if started early it has better and longer effects in slowing these
symptoms

testing done that was positive were

i carry the apoe4 apoe4 gene that puts me at high risk
maybe 10-20 x increased risk of developing alzheimers disease

testing on my spinal fluid reveals i have low beta amyloid
and high tau levels
this was done 6 years ago
this is associated with alzheimers disease

my mri scans and glucose metabolism pet scans are all normal
early in the disease these can be negative but later
they become positive

i have low b12 levels low vitamin d3 levels
high homocysteine levels
homocysteine if elevated is associated with an increased risk
for heart disease stroke and alzheimers disease
maybe

these levels are corrected by taking replacement supplements
under the care of my primary care doctor
my levels are now all normal

i aggressively take care of my health
i follow dr bredesens protocol from his study
reversal of cognitive decline
again under the care of my physicians

so i have been stable now for 6 years
probably no one notices i have a problem
maybe not even my wife she
but i do

i know that i have alzheimers
deep inside my body tells me
that i do

so all of the things i am doing now
i realize they dont stop the disease
it just keeps marching on from one brain cell to the next
they only slow things down some
i know
that in the end this disease wins

unless
i can find something to stop this disease from marching on
so
for the last 6 years i have been keeping a close eye
on all the research thats going on
looking for the drug that might treat the disease
or at least
slow it down significantly

oh theres real promising stuff out there
but
it may be a decade or more away
too late for me

beta amyloid is a protein that accumulates in the brain of
a person with alzheimers disease
many feel like its the cause of the disease
remove it or prevent it from accumulating may
prevent or slow down the disease

so three years ago i spotted the aducanumab study
here is a good review of it from ucsf memory center

so for me
it seemed to be the one i was looking far
it seemed to work in a preliminary study called phase 1
folks with my diagnosis had all the bad beta amyloid
which is thought to be the cause of alzheimers
removed from their brains
ie
their amyvid pet scans for the beta amyloid which showed
beta amyloid throughout the brain
after a year of treatment it was all cleared out
then
these folks memory also improved
thats the true measure
does it make things better

so if this stuff works
it should stop the disease in its tracks
or
at least remarkably slow it now
so
that
a person with it may die from something else
like maybe old age

so
this was where i was at about a year ago
when i heard this study was coming
i knew i wanted to be in this one

i started the five step process last november
requiring multiple visits to work through the steps
some involving my wife she
i passed all the tests
meaning some of them were abnormal
then
last week i went up the fifth step
the amyvid pet scan for beta amyloid in the brain

if its positive
i have alzheimers disease for sure
im in the study

if its negative
i am not in the study
i just got a big time reprieve

are you nervous
anxious
scared
sad
waiting like this

no i said
this has been going on too long
i also have been open and written and freely talked about
all this
i think it has helped
plus
it has helped to get educational stuff out to folks
many who have now volunteered for research studies

now i did cry when i heard i was accepted just to be considered
to be in the study

so
yesterday
as i pulled up my email
there it was from the
alzheimers disease center at ut southwestern

i am sorry to say dr nash
but
your amyvid pet scan shows that you have amyloid deposits
throughout your brain
i knew this was going to be that way
so it means i have alzheimers disease
especially when you add up my history and other testing

thats the bad news
but
the good news is that qualifies you to be in the
aducanumab study

as soon as we get all the official confirmations
we will set you up for the infusions of
aducanumab monthly for 18 months then another 3.5 years if it seems
to work
i realize i also may get the placebo for those 18 months
my chances are 33% i will get the placebo
but
after that i will be able to get the real stuff
either way i am fine with
because eventually i will get the real drug

so in this slide above
on the right is what my scan looks like
all the red stuff is amyloid
then
if i get treatment
in a year my scan will look like that on the left

so am i sad
yes and no
its sort of sad to get this final answer
like being told you got a noncurable cancer
remember alzheimers is usually the true cause of death for those who get it

did i cry
yes i cried yesterday
like when my mom died and my brother died

am i happy
yes i am happy but sad at the same time
i know that i might be able to do something now to slow this down
be involved
with something that may change a lot of folks lives

as of right now
i feel some hope
i am ready to face this new stage in my our lives

i feel like i just won a million dollars
or maybe the lottery

the sad but happy
the organicgreen doctor

dear ms b-todays it

DEAR MS B-TODAYS IT

now ms b
i hope when you read this
well my guess is that you will probably be around 10-15 years old
when you first read this
as you sit on the couch with your laptop or your whatever is being
used then
as you read this blog today
i hope you will be able to look over at the easy chair in your
living room
there sitting in that easy chair will be me
ill look at you
smile
ill understand
i we made it

you see ms b
i have or may have alzheimers disease
i hope by the time you read this
you will know a lot about the disease
we should have a good treatment or maybe a cure
when you read this

today ms b
your gma and i make the drive up to ut southwestern in dallas
a 3.5 hour drive
i drive up there
your gma drives home

today we are going there to get a scan
called the amyvid pet scan
its a scan that will show the beta amyloid if its there
hopefully you will know a lot about this disease and
will understand what this means

a quick summary
i have a strong family history of alzheimers disease
i have a gene apoe 4 that puts me at risk for getting alzheimers disease
i have abnormal levels of beta amyloid and tau protein in my
spinal fluid which is associated with alzheimers disease
i had a normal memory tests 8 years ago then 3 years later
it was abnormal

so i probably have alzheimers disease
i take medicine called aricept donnepezil for it
i am aggressively doing healthy things to help
but
i need one more thing
i need the final picture the final piece of the puzzle
the amyvid pet scan for the beta amyloid

if its positive
well i got it that alzheimers disease

the good thing though is that if this thing is positive
like i expect it to be
then i qualify for the aducanumab study

i then will receive monthly infusions that has a chance to slow it down
or
if we are lucky stop it in its tracks

so ms b
todays important to us

so ms b
as you read this look over at the chair
if its empty
this stuff didnt work
but
if i am sitting over there smiling at you
well
then
this stuff worked

the organicgreen doctor

alzheimers news-did you know that

ALZHEIMERS NEWS-DID YOU KNOW THAT

did you know that
i have an appointment on february 28th to have my
amyvid pet scan
this scan will show if i do or if i dont have alzheimers disease

if its positive
i probably have alzheimers disease
remember nothing in medicine is 100%
i will be in the study called the
aducanumab study by biogen
i soon after would start monthly iv infusions of the drug
aducanumab an antibody against beta amyloid

if i then get the real thing and not the placebo
my scan in a year will go from brightly positive
to brightly not positive
hoping that it correlates with an improvement in memory

the results should be out in over 18 months
so we will know
if it looks like it works i plan on continuing the
extension of the study for another 36+ months
if it works
i will not want to get off it

my thoughts are that this stuff only works if you get
to the disease sooner even sooner than where i am at now
it will work best probably if used before symptoms start

now if its negative this scan
i got one helluva reprieve
its like being told you dont have terminal cancer after all


did you know that
in texas you can sign up to be monitored starting at 50 years old
at no cost
baylor at houston  texas tech  university of north texas
ut southwestern dallas  university of texas san antonio
these universities are part of a long term study that will do
labs memory tests neurological exams and maybe mri
annually
here is the link to find out more
www.txalzresearch.org

here is the link to where i go
alzheimers disease center ut southwestern

if you have time watch the video my wife she and i
did for the center thats on that page

did you know that
learning a second language early in life decreases your chance
of developing alzheimers disease
these folks develop a brain reserve from using certain parts
of the brain more over the years

you know that
afroamericans have a higher incidence of alzheimers disease

did you know that
by following the mind diet you can lower your chance of
developing alzheimers disease when you get older
heres the link to the mind diet

did you know that
controlling you blood pressure cholesterol weight diabetes
decreases your chance of alzheimers diease

did you know that
if you exercise regularly you can decrease your chances of
getting alzheimers disease

did you know that
poor sleep from insomnia sleep apnea restless legs etc can
increase your risk for alzheimers disease

did you know that
1 in 5 dollars of medicare is spent on alzheimers and other dementias
by 2050 that will go to 1 in 3 dollars

did you know that
smoking increases your risk of developing alzheimers disease

did you know that
head trauma can put you at risk for developing alzheimers disease

did you know that
if someone in your family has alzheimers disease then you are at
risk for developing it

did you know that
you can help find a cure and help others
by
becoming involved in your local walks to raise funds
go to the alzheimers association website www.alz.org
to find out where your walk is
there are also independent alzheimers organizations in some states
or
in central texas
go to the texas alzheimers website www.txalz.org
and or
write your congressperson to encourage them to support
funding of more alzheimers research

we can not afford to not do something to help

a treatment or cure is within our reach
possibly within my reach soon

help us help yourself help your family help others if you can



i will be speaking along with other alzheimers speakers at
the alzheimers symposium in temple texas
on
friday april 28 2017
my topic is my story and clinical studies

there is no fee and a light lunch is provided
here is the link to the symposium for more information
and for registration information
http://www.txalz.org/education/conferences/

the organicgreen doctor