welcome to the organic green doctor blog

i am a family physician who was diagnosed with
early mild cognitive impairment(mci) amnestic type on december 21, 2010
this is a precursor to alzheimers disease
because of this diagnosis i have opted to stop practicing medicine
this blog will be about my journey with this disease
please feel free to follow me along this path
i will continue blogging on organic gardening, green living,
solar power, rainwater collection, and healthy living
i will blog on these plus other things noted to be interesting

Friday, July 22, 2011

my story-final answer part two

this is the part two of a three part blog on my story-final answer
this blog today will deal with the neurology visits, the medication
i am on, the research study im in, and the diagnostic tests that
have been done

next week the blog will be on what it all means for me and maybe
for you and your family

neurology visit
i met with the neurologist on december 21 2010
she interviewed me and my wife she
she also did a neurological exam on me
she reviewed the neuropsychological exam i had done-the one
where i did poorly on the short term memory portion

because i had a normal neuropsychological exam 2 years ago
followed by a abnormal neuropsychological exam 2 years later
because i had noticed problems with my memory over the last
few months and
because of my strong family history of alzhiemers disease in my
family-mother, father, a close younger relative and probably
numerous aunts and uncles
she felt and i agreed with her that i had early mild cognitive
impairment amnestic type probably from alzheimers disease
(remember alzheimers disease is only 100% diagnosed at autopsy)

she felt and i agreed with her that i should start on a medication
called aricept (donepezil)
i knew that medicine well
i had just written it for a patient of mine the day before as he
has mild alzheimers disease
my mother was on the same medicine and my close relative is
presently on it

so why do i need to be on this medicine
if what i have is due to alzheimers disease then it will progress
rapidly or may progress slowly but it will eventually progress to
the same awful end point

the medication aricept (donepezil) doesnt stop the disease process-
that deposition of amyloid in the brain and the unraveling of the tau
proteins in the nerve cell that may be the cause or end result of
it just marches on no matter what

the aricept (donepezil) inhibits acetylcholine esterase an enzyme
that breaks down acetycholine in the nerve cells
by inhibiting this enzyme the levels of aceylcholine stays elevated in
the nerve cells so what nerve cells remain work better

by taking the aircept (donepezil) the aceylcholine levels are kept
high and the brain works better
if you stop the aricept (donepezil) the acetylcholine levels drop and
the brain doesnt function as well
the bad thing is when you restart the aricept (donepezil) you dont
regain back to where you were

so it was decided that i take the medicine to maintain my status
where it was now rather than wait to see if my memory got worse
then start the medicine ie i would have lost ground that i could
never regain

so i have been on the medicine now for 7 months
the side effects are tolerable
it causes vivid dreams more than ive had in the past
it causes a figgidness especially in the morning time after i take it
i have to go outside and work or take a long walk
it also causes a restless leg like symptoms especially at night
it also interferes with sleep
both of these symptoms are relieved somewhat by taking a
childs dose of benadryl
i have not had any of the gastrointestinal symptoms that some
people have

so i have stayed on this medicine now and will stay on it until
it doesnt work anymore
at that time usually another medicine is added to the
aricept (donepezil)
when that will be i dont know
it could be in 1-3 years or 5 years or 10 years or never

i then underwent testing to rule out other treatable causes of
my memory loss
i had a complete blood count to rule out anemia, infection, leukemia,
a complete metabolic panel to rule out diabetes, electrolyte
problems, kidney disease, liver disease, a tsh level to rule
out hypothyroidism, a b12 level, a hiv test, a syphyllis test, hepatitis
screening, a urinalysis, and a sed rate to rule out inflammation--
all of these were normal

i had an ulrasound of the carotids to rule out blockage to the arteries
in the neck--this was normal

i also had a mri with and without contrast to rule out aneurysm,
tumors, strokes, circulatory problems, brain shrinkage, and
increased fluid in the brain--the mri was nomal

i was also screened for depression several times and i dont feel
depressed and the screens were negative for depression

after a few months on the aricept (donepezil) i did a followup
visit with the neurologist
i will see her every 6 months and will remain on the medication

i also was now able to enter the adni-2 (alzheimers disease
neuroimaging intitiative) study at the university of texas medical
school memory clinic since i was stable on the medication

this study is important as it may define how a person is
evaluated for alzheimers disease in the future with these tests
that i am having done

this time i was entered not in the normal control group but in the
early mild cognitive impairment group
the other groups are normal, late mild cognitive impairment
and alzheimers disease (aint there yet)

during the initial visit i had another neuropsychological exam,
a screen for depression, the same labs as above, and an
mri of the brain-the short term memory problems were still
present and the labs and mri were normal

i then had blood drawn for genetic tests and other dna and
rna tests-one of these genetic tests is for the apoe 4 genotype
which is known as the alzheimers gene
i underwent a spinal tap for amyloid protein (beta amyloid protein)
and tau protein-more about them later
i had a fdg (flurodeoxyglucose) pet scan which measures glucose
metabolism in the brain
in alzheimers disease the glucose metabolism slows and the fdg
pet scan shows early on in mild cognitive impairment a decreased
uptake in or near the hipppocampus on the undersurface of the
brain where memory occurs

above is a fdg scan that shows decreased uptake (the red color)
in mild cognitive impairment  and in alzheimers disease

i also had a florbetapir f 18 pet scan which measures amyloid in the
brain-this is a research pet scan not available outside of research-
in mild cognitive there is an increase uptake in the hippocampus area

as the disease progresses (as more amyloid gets deposited) the
scan turns positive diffusely across the brain

this is a scan similar to the amyloid scan mentioned above
you can see the increased red amyloid deposition in alzheimers
disease vs a normal control scan

i will never see the reports of the labs, mris or the pet scan reports
as they are protected by the research study
that is part of the deal

i will have the pet scans and lumbar puncture every 2 years
i will have the mri at 3 mo 6 mo 12 mo 24 mo 36 mo 48 mo
i will also do neuropsychological tests, depression tests, and
blood work at each visit

i elected to have the apoe genotyping through my primary care
provider as i wanted to know the results
i felt like i was well versed on alzhiemers disease and understood
what the apoe tests mean and what limitations it has

the apoe gene is called the alzheimers gene although it is one of
several that may be associated with alzheimers
the apoe gene can be 2, 3, or 4
apoe 2 may be protective for alzheimers
apoe 3 may have milder degrees of alzheimers
apoe 4 i call it the sucky gene

a genotype of  a single apoe 4 gene (heterozygous for you
science folks) carries a risk of 10-50 % chance of developing
azheimers disease
a genotype of double apoe 4 gene/apoe 4 gene (homozygous)
carries a risk of 50-90 % chance of developing alzheimers disease

well i got screwed it looks like
i have the apoe 4/apoe 4 homozygous gene
ie i got it from each of my parents

i also opted to obtain spinal fluid for analysis of biomarkers for
alzheimers disease through my primary care provider
one of them is the beta amyloid protein
in alzheimers disease as the amyloid gets deposited in the brain
the amyloid levels go down in the spinal fluid

well i got screwed again as my beta amyloid protein is low in my
spinal fluid

the other test on the spinal fluid is the tau protein
its a protein thats found in the brain thats involved in the nerve cells
as this protein gets unraveled it gets phoshorylated and the p-tau
levels in the spinal fluids go up
well my levels were in the borderline level for alzheimers disease

here is a graph of my results
the left side of this graph  is the beta amyloid level
the level is low
the horizontal side is the ptau level
the level is borderline

so i have a normal neuropsychological exam 2 years ago followed
by abnormal neuropsyhological exams showing short term memory
noticeable memory problems to me,
a strong family history of alzheimers,
a positive apoe 4/apoe 4 genotype,
a low beta amyloid in the spinal fluid and
a borderline level of p tau protein in the spinal fluid

all of these point to azheimers disease as the cause of my mild
cognitive impairment

if i could see the reports of the fdg pet scan and the amyloid pet
scan i would have an even more accurate picture of where i stand

next week in part three i will try to put all of this together and what
it means to me, my family and possibly to you

please support my team-organicgreendoctor.com-by donating to
it at my donor site or support your local walk to end alzheimers
at www.alz.org/walk/

the organicgreen doctor


  1. I have EOAD. Why are you subjecting yourself to recurring PET scans and lumbar punctures?

  2. I understand thaat you are a doctor but I respectfully request that you consider adding Namenda. I have and it helped me to regain some focus. Plus it fights the disease from a second path like no other medication.

  3. ttom
    i have been diagnosed earlier than most people and am a good candidate for research. the scans and spinal taps are part of a very important study being done called the adni-2 study

    having gone through this with my parents and a sibling its the least contribution i can make to helping in my small way to find a cure and better treatment for this awful disease

    the aricept is working fine for me with few side effects and for that reason dont feel a change is needed. my relative is on aricept and namenda but the relative is more advanced than i am

    thanks for the comment

  4. It's very brave of you to do this, I for one salute you and wish you the best in your journey. Most people can't help like this until they are dead. With such a horrible disease, at least you can use it to someone's advantage maybe. God Bless You.

  5. Very brave, William. And altruistic too.
    I am sorry you have had the lab test results you've had, but am glad you've sought the best care you could.
    I assume, because you're so interested in organics and green living, you've looked at the data about enviromental influence on apoE (especially) expression...I know the data generalized are not great, either in quality or implication, but I can tell that you like individuality, so you might do at least a look-see, and then, possibly a deep-dive: exercise, e.g., changes neuroplasticity : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3092070/?tool=pubmed

    Also, you might look at CFIT in Santa Barbara (I live here, but don't have an affiliation with them): Ken Kosik is interested in both early detection and forestalling decline with environmental/lifestyle measures: tell Ken I suggested you contact him: http://www.sbcfit.org/

    Good luck!

  6. dr john
    thanks for the information
    best practices involving exercise, controlling lipids, controlling blood pressure, controlling stress, proper sleep habits, proper diet et al may prove to be helpful with this disease

  7. I have just discovered your blog this morning and will follow along. I admire what you are doing here. I am my mother's caregiver, and an avid researcher (amateur) of medical alternatives. My mother has done very well considering she was first diagnosed with Alzheimer's 10 years ago. Both her brother and her sister died of it within 4 years of their diagnoses.

    For my mom, we took her off of Aricept after the first year and replaced it with the herb galantamine. As I'm sure you know, galantamine was synthesized into the drug Reminyl, subsequently named Razadyne. Our belief is that the natural herb galantamine is better, and also tolerated more easily by the body. Galantamine performs exactly like Aricept in its function of assisting acetylcholine levels, but has an additional function of binding to nicotinic receptors. We buy it ("Galantamind Plus") from the Life Enhancement company, where you can find extensive information. My mom actually experienced improvement for a while after we made the switch, and I am convinced her subsequent decline has been very greatly slowed down. At this 10 year point, although her memory is very short-term now, she is still totally verbal, dresses and bathes herself, and is very high functioning.

    She has also taken Namenda since it was first approved in the US, and a number of other vitamins/supplements which I can name if you are interested.

    A more recent discovery we have made is the use of coconut oil for fueling brain cells. I've seen mentioned in your blog that in Alzheimer's disease brain cells lose their ability to use glucose as fuel. If you've heard of the prescription "medical food" Axona, then you know that medium chain triglycerides can be an alternative fuel for brain cells. We tried this with Mom, and although it worked amazingly well for her brain, it made her so sick she couldn't take it anymore. Dr. Mary Newport, whose husband was diagnosed with AD, is bringing to light the fact that good quality, cold-pressed, organic coconut oil is an absolutely wonderful source of medium chain triglycerides and it's working wonders with Alzheimer's patients. This has proven absolutely true with my mom. Dr. Newport has written a book and has videos on YouTube. It is a misconception that coconut oil is an unhealthy saturated fat. That is true of processed hydrogenated coconut oil, but the natural cold-pressed oil has many health benefits.

    I hope that by being part of a study, you are not prevented from trying different approaches to managing the illness. My highest regards and best wishes to you.

    1. thanks for reading the blog
      once a week especially on fridays i try to write on something to do with alzheimers
      the rest of the time i write on other things as it helps to not just write about this all the time

      the adni2 study im in doesnt restrict me from using other things it only asks that i let them know when i use something else as this is all followed by the study

      i am on aricept and yes it has side effects that i decided to accept as right now its the only proven thing that can help slow down the symptoms and even then it doesnt work on everyone

      i understand that when i take it every morning that i may be taking something that does me no good but i do know that in the last 2 years there has been no progression in my symptoms
      i know that personally and from the neuropsych exams that i take regularly while on the study

      i took axona for awhile but decided that hear was what i was going to do
      i would definitely do those things that have been proven to work by scientific research and i for my self was taking a lot of other things that might help but were not proven such as vit d cumin omega 3 the axona but i got tired of piling all that up in the morning and taking it

      personally i think only the aricept helps and the other stuff probalby doesnt in the long run do much good
      i also know that aricept if it is working in me will soon not be working

      i feel like that these things probably have more effect on the disease than those supplements
      exercise mental activity social interaction proper diet proper diet perfect control of blood pressure cholesterol weight and diabetes

      until that magic pill shows up this is what i am going to go

      soon i and everyone else in my situation will be able to as definitely as can be know whether what they have is alzheimers or not
      blood tests which im having with the study pet scans of the brain for beta amyloid etc
      i hope soon to know for sure if what i have is alzheimers or not
      until that happens im doing the above

      that said there is no harm that im aware of of doing those things you mention above

      thanks again for reading and commenting on this blog

      the ogd