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[FitEyes Discussion 16904] What else can we do? Already doing everything your doctor recommends? Want to do more to prevent glaucoma progression?

Submitted by terry on Sat, 11/26/2016 - 3:16pm

David wrote: I am working on a series of new blog posts. This is the theme:

*What else can we do to take care of our eyes and to prevent glaucoma
progression? Are you already doing everything your doctor recommends? Do
you want to do more to prevent glaucoma progression? *
My first post is about *tests* we can request (or do at home). I came up
with a list of eight tests that are typically overlooked. Many top glaucoma
specialists even overlook some of these tests. Some of these are home-based
tests, but some need to be ordered through your doctor.

My primary purpose here is to offer suggestions that even the most
comprehensive glaucoma specialists may not be recommending to their
patients. Therefore, you can consider this an advanced topic.

Many of these tests are not expensive. The information, however, could
radically improve our knowledge. Taking advantage of these tests is a very
practical step we can all take toward a cure.

What follows is an early draft. I would appreciate input from all of you,
particularly in regard to lab tests you have found helpful.

My last blood tests for nutrients, in September, were incredibly valuable.
I was shocked to discover that *I was deficient in more than one nutrient*.
I ordered my tests through FitEyes
<http://estore.fiteyes.com/collections/laboratory-testing>. I am correcting
my deficiencies with supplements now. But I should have done this years
ago! Don't make my mistake. I urge you to do these tests now.

*PART 1: TESTING*

1. Order a DNA test. I recently ordered the
https://www.23andme.com/store/cart/ $99 DNA kit. It's a home-based saliva
test. (It will be another couple weeks before I know my results.)

You can also spend $1095 or more for a "whole genome" test. I may do this
in the future at https://www.genebygene.com/pages/research# (or another
company). I understand from Dr. Ritch that he has this test done.

But the 23andMe data is *more than sufficient* for what I am recommending
here. It is also affordable enough that almost all of us can do it.

I would love to see FitEyes perform a DNA-glaucoma study within our group.
The first step is for all of us to order the 23andMe test. Order it now
because it requires several weeks to get your results. When we know our
results, we can have discussions that are more individualized. It's
definitely a step forward.

Our *DNA is not our destiny*. DNA is not a deterministic blueprint for our
health. Learning about our DNA offers opportunities to heal and to enhance
our well-being through diet, dietary supplements, meditation, exercise and
many other lifestyle factors.

For example, we can fine-tune our dietary supplement programs based on the
results of these tests! I plan to discuss this extensively in future posts.
But many of you already know that certain B-complex vitamins and
multivitamins are harmful to those of us with a very common DNA
polymorphism (which affects about 40% of the population). With this DNA
knowledge so easily available and so affordable, we should all take
advantage of it -- especially those of us with glaucoma -- and those of us
who are taking dietary supplements.

2. In a few weeks, after your 23andMe results come back, use the 23andMe
raw data to get health reports:

A. Go to geneticgenie.org and order these two profiles. (This is a free
donation-based service.)
https://geneticgenie.org/detox-profile/
https://geneticgenie.org/methylation-analysis/

B. Optionally, go to Gene Variance Report <https://livewello.com/genetics>
for very comprehensive reports:
It costs $19.95 for each person's Raw Data and will generate a report in
minutes.
https://livewello.com/genetics

3. Those interested in exfoliation syndrome and pseudoexfoliation glaucoma
should look at the LOXL1 polymorphisms. These are *included* with the
Livewello app (mentioned above) at a cost of $19.95. More info here:
https://livewello.com/snps/library?action=preview&index=823275&for=demo

4. Go to http://omegaquant.com/omega-3-index/ scroll down to bottom and
order the 24 Fatty Acid Profile for $99. The simpler $49 test is also OK,
but for research purposes I would like to see us all get the full test.
It's a home-based finger-prick test.

Balancing my omegas was one of the highlights of 2014. I feel a significant
reduction in systemic inflammation. One way this shows up for me is less of
a tendency toward allergies. But reducing systemic inflammation is
important for all glaucoma patients (as well as anyone concerned about any
chronic disease -- or even the aging process).

5. Regularly monitor your contrast sensitivity test results at home using
this kit: http://marsperceptrix.com/mars-letter-cs-test. Having the right
test kit is very important! This is the only kit I recommend, and we should
all use the same one. (The test kit is on the expensive side, but I hope to
offer a less expensive option in the FitEyes store. This has been on my
ToDo list for a while and I followed up on it today. I hope to have a
solution in a week or so.)

6. Ask your doctor for some extra lab work. I continue to be astounded that
glaucoma specialists almost never do blood work or other traditional lab
tests for their patients. We already know that low vitamin D status is a
risk factor for the development of glaucoma (
http://www.ncbi.nlm.nih.gov/pubmed/24476947). That's just one example of
nutrients that we should all be checking via lab tests. Vitamin B12 is
another. No glaucoma patient should ever be allowed to have low B12 or
folate or vitamin D!

Here are some tests you should request through your doctor. (You can also
order some of these tests through FitEyes
<http://estore.fiteyes.com/collections/laboratory-testing>, although we do
not offer them as medical diagnostic tests. We are doing this for
informational and research purposes only.)

Nutrients, antioxidants (important):

  -     folate (RBC)
  -     vitamin B12 (ideally including methylcobalamin)
  -     vitamin B1 (whole blood)
  -     vitamin C
  -     vitamin D3 (25-hydroxy)
  -     magnesium (RBC)
  -     zinc
  -     iron
  -     selenium
  -     beta-carotene and vitamin A
  -     carnitine
  -     glutathione
  -     CoQ10

General:

  -     homocysteine (*important*)
  -     C-reactive protein (CRP)
  -     CBC including all the usual such as uric acid, MCV, MCH, AST, ALT,
  etc.
  -     blood lipids (all the usual including HDL, etc.)
  -     thyroid panel (optional)
  -     fibrinogen activity
  -     ESR (sedimentation rate)
  -     if your doctor agrees, consider including glucose-related markers
  (glucose, HA1c, etc.)
  -     furthermore, if she agrees, consider a comprehensive analysis of
  allostatic load (which can include urine, blood, saliva and other
  biomarkers of general stress and oxidative stress).

Please give me your feedback on the most important tests to include in the
list above.
7. Get a device for monitoring r-r interval-based heart rate variability
(HRV). In the future, FitEyes plans to incorporate HRV data into the IOP
database and to correlate these data streams. This will help us identify
and quantify more relationships between stress and IOP. In the mean time,
you can begin your own investigation. It helps if you practice or learn a
meditation technique that fosters heart rhythm coherence (such as Serene
Impulse). The device options are:

  -     Zephyr HxM (recommended)

  <http://www.amazon.com/Zephyr-Monitor-iPhone-Bluetooth-Low-Energy/dp/B009XDTN80?tag=jaxfl32225-20>
  -     Zephyr BioHarness (more expensive and probably overkill for most
  people. Of course, I have one myself as I always go for overkill!)
  -     top of the line Polar HRM (not recommended)
  -     future FitEyes device (in development and there is no estimated
  ETA)

8. Monitor your eye pressure (IOP) at home. Eye pressure remains the #1
risk factor for glaucoma and the only risk factor that mainstream medicine
can treat. Furthermore, reducing eye pressure benefits every type of
glaucoma patient, even those with low tension glaucoma.

Leading Medical Specialists From Around the World Coalesce Around Home
Monitoring For Glaucoma Patients
<http://www.fiteyes.com/blog/dave/leading-medical-specialists-from-around-the-world-coalesce-around-self-tonometry>

As a general rule, *the single most important medical treatment you take
advantage of to reduce your risk of further glaucoma progression is to
further reduce your IOP* (even if you have NTG). And the best way to do
that is to monitor your IOP at home so you really learn how it behaves.

When I monitor my eye pressure at home, I do not do it strictly with a view
toward medical management of glaucoma. I definitely do not view eye
pressure through the lens of disease / pathology. For me, home tonometry
has become part of my stress management and spiritual practice. I have
gained tremendous insight into myself. The practice has brought benefits to
every area of my life.

The Comfort I Get From Monitoring My Eye Pressure
<http://www.fiteyes.com/the-comfort-that-comes-from-monitoring-your-eye-pressure>

In this way, both HRV and IOP monitoring are about so much more than
glaucoma. They are powerful tools for living a fuller life, for reaching
your full potential and for achieving optimal well-being.

8.B. When you have a tonometer, I recommend doing the water drinking test
<http://www.fiteyes.com/comment/1949#comment-1949> once every 3 months (or
more often). You can read about it here:

Water drinking test for glaucoma and self-tonometry research | FitEyes.com
<http://www.fiteyes.com/blog/msbytemeee/water-drinking-test-for-glaucoma-and-self-tonometry-research>

Here is the protocol:

  - decide whether your tests will be conducted with 800 or 1000ml of
  water, then stick with that amount on subsequent tests.
  - refrain from liquid intake for 2 hours prior each test
  - measure IOP immediately before drinking water
  - consume the water within 5 minutes
  - measure IOP at 15, 30, and 45 minutes after the intake
  - don't do any activities you know to impact your IOP during the test

To my above list of eight tests, we can add regular visual field tests and
OCT tests. Many FitEyes members may be surprised that some glaucoma
patients are not offered these tests. For the first two years I was being
treated, my ophthalmologist did not perform either of these tests! I want
to make sure other glaucoma patients don't suffer the same level of poor
medical care. Therefore, this list will include the regular visual field
tests and OCT tests, for a total of 10 recommendations.

9. Regular visual field testing at your ophthalmologist's office. The
recommended instruments are either the Goldmann Octopus 900 perimeter or
the Humphrey HFA II series. (The Humphrey Matrix is not sufficient.)

10. Regular OCT tests at your ophthalmologist's office.

11. Bonus item: ask your glaucoma specialist to test your ocular pulse
amplitude with a Pascal Dynamic Contour tonometer. Your ocular pulse
amplitude will change over time (even minute to minute), but there is value
in knowing your results. (See this groundbreaking 2013 paper
<http://bmctoday.net/glaucomatoday/2013/09/article.asp?f=new-concepts-in-our-understanding-of-glaucoma>
for an even better test of the pulsatile dynamics of your aqueous humor
outflow, although I suspect that test will not be available to any of us
just yet. I'll start recommending it when it becomes readily available.)

How did I come up with my recommendations? First, for the historical
perspective, you can see how my thinking has evolved since this 2007 blog
post:

What Can We Do To Prevent Further Glaucomatous Damage To Our Eyes? |
FitEyes.com
http://www.fiteyes.com/blog/dave/what-can-we-do-to-prevent-further-glaucomatous-damage-to-our-eyes

For the current article, I started with the following view of glaucoma in
mind:

*All glaucomas have a final common pathway of retinal ganglion cell death
involving low-grade inflammation, oxidative damage, mitochondrial
dysfunction, and glial hyperactivation.*
I expanded on that and arrived at this list:

  - ischemia (reduced blood flow) to the eye
  - systemic inflammation
  - mitochondrial dysfunction
  - glial cell hyperactivation and related immune dysfunction
  - oxidative stress (i.e., insufficient antioxidants in the eye)
  - diminishment and eventual loss of dynamic pulsatile
  <http://discuss.fiteyes.com/archive/all/2014-June/012135.html> action in
  the eye (see groundbreaking 2013 paper
  <http://bmctoday.net/glaucomatoday/2013/09/article.asp?f=new-concepts-in-our-understanding-of-glaucoma>
  )
  - dysregulation of aqueous humor outflow (of which elevated IOP is a
  symptom)
  - nutritional deficiencies or imbalances related to vitamin D, vitamin
  B12, vitamin B9, possibly vitamins B1, B2 and B6, selenium excess, calcium,
  magnesium and iron status, and more.

My list of tests covers overlooked aspects of many of these factors
underlying glaucoma. It also emphasizes tests we can do at home and/or at
low cost.

However, I have also zeroed in on nutritional status, blood circulation to
the retina, inflammation, oxidative stress, immune system and mitochondrial
health. I have a nascent theory that ties all these things together and
makes nutritional status more important than previously thought. As we move
forward with this testing, our community discussion will help me refine my
thinking about something that may be an even more fundamental factor
underlying all the above factors. (I'll share my theory with you, and I
hope you will participate in at least some of these tests.)

(The next section, when I complete it, will discuss *treatments*, including
diet, exercise, meditation, supplements, etc.)

Regards,
David

*Summary:*

1. Order the https://www.23andme.com/store/cart/ $99 DNA kit.
2. In a few weeks, after your 23andMe results come back follow up by going
to geneticgenie.org and order these two free profiles.
https://geneticgenie.org/detox-profile/
https://geneticgenie.org/methylation-analysis/
3. Go to https://livewello.com/genetics for very comprehensive reports
using your 23andMe data
4. http://omegaquant.com/omega-3-index/ order the 24 Fatty Acid Profile for
$99.
5. Contrast sensitivity test
6. Blood nutrient testing (and other blood work)
7. HRV Monitoring
8. Monitor your eye pressure (IOP) at home.
8.B. Water drinking test for glaucoma and self-tonometry research |
FitEyes.com
<http://www.fiteyes.com/blog/msbytemeee/water-drinking-test-for-glaucoma-and-self-tonometry-research>

 
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