AAtoMDS

Aplastic Anemia Home


Patient Forum


FREE Aplastic Book Preview

Navigation Page

    
  
  

         
Web

Site 


Start Here

Aplastic
Anemia Basics

Acronyms
Site Listing Music
Bruce Story

AA White Paper

Short List
Medical Dictionary Social Security 
Alternative Wellness

Aplastic BLOG

Old
AA Forums

Old Patient Stories

LINKS


Transplants

Bone Marrow
Disorders
Email Bruce
Clinical
Trials
Medic
Alert

Patient Stories

Add Your Story

Nat’l
Inst of Health
Nutrition

COUNTS BEGIN TO FALL IN
SEPTEMBER 2005


Historical

journal 
http://aplasticcentral.com/AA_Members/bruce.htm


Current

Journal  http://aplastic.livejournal.com/

After 3 years of marginal progress against AA I was recently
presented with some alarming news. All my counts had dropped significantly from
their "high" points in September of 2004:

Bruce WBC RBC HGB HCT PLT
Minimum 4 4.6 13.5 13.5 150
2001 3.5 1.8 7.0 20 7
2002 3 2.5 8.4 8.4 15
2003 2 3.0 11.7 32.6 23
2004 2.4 3.5 13 39 21
2005 1.7 2.3 9 27 17

 

Meanwhile, over a similar time frame my friend Marla reported
significant progress as evidenced by the charts that follow.

Marla WBC RBC HGB Hct PLT
Minimum 4 4.6   13.5 150
N/A          
2002 3.0 2.1 9.1 28.2 15
2003 6.3 4.4 14.5 46.3 88
2004 5.0 4.1 13.8 44.7 94
2005 5.4 4.0 13.8 43.2 118

 

On a comparative basis, I am in blue and Marla is in maroon.

Now I never claimed to be a rocket scientist, but it appears
that Marla has a better game plan.  She and I will be collaborating on what
she has been doing differently.

I must point out that I did not follow the organic diet or other
aspects of my regimen as closely as I could and should have.  The good news
is I can give it another try starting right now and I have my best friend in the
whole world leading the charge.  Sue is planning and cooking special meals,
re-reading everything from before, encouraging, kicking my rear when necessary
and has dramatically improved her own health over the last six months.  As
my friends at KSP would say, "Bring it On!" 

Sue and I are not going to let this
setback spoil our plans for active travel and relocating to a warmer climate for
the winter months.  It may cause us to be a bit more cautious but we are
not about to give up! On a very positive note, the setback is causing me to
become an active participant again and I am rededicating myself to finding out
what works and use it to help myself and others. (See journal
below)

Marla credits MDS sufferer John Hess with the inspiration to try
her natural approach and the table below outlines John’s approach. 
Hopefully we can all continue to learn from each other.

Extracted Items from John, Marla and My Approach – Checking for New
Ideas

Marla:

  • Aerobic Exercise
  • Bounce on a Mini Trampoline – Get toxins moving
  • Deep Breathing to improve lymphatic flow
  • 30 Phlebotomies
  • Chemical Testing
  • Genetic Testing
  • B12
  • Fruit Smoothies – fresh organic oranges, kiwis, bananas,
    pineapple & water
  • Juicing
  • Raw Vegetables
  • Zinc, magnesium, selenium, manganese, MSM, flax/borage oil (2005
    start)

     
John:

  • Aerobic Exercise
  • Bounce on a Mini Trampoline – Get toxins moving
  • Jason Winters Herbal Green Tea
  • Detoxify (Enema)
  • Raw Vegetables
  • 2 Garden of Life Primal Defense Tablets  [Garden
    of Life
    ]
  • 8 Megazyme morning & evening

    Megazyme
  • 10 grams per day of ester C Vitamin C
  • NAC
  • Alpha Lipoic Acid
  • Folic Acid
  • CO Q10
  • a multivitamin and mineral supplement
  • and a number of food type supplements discussed in the diet
    section below.


     
 
Marla

Website

Blood
draw for a complete chemistry panel including B12, folate, iron/ferritin,
T4, and lipids.

10/11 Forum Post Extract



Along those lines, I’ve also read that certain vitamins and minerals are
the same way–i.e. some people need more than others, so a one-sized
recommendation for those can also potentially have different effects for
different people. There’s a book called Adrenal Fatigue, the 21st
Century Stress Syndrome by James L. Wilson which has this to say about
Vit C dosage:



"To find out how much vit C your body need, try a very simple test
called the vit C loading test. On day one take 500mg of ascorbic acid
w/250 mg of bioflavinoids. Increase your ascorbic acid by 500mg and you
bioflavinoids by 250mg every hour until your bowel movements become
somewhat loose and runny. Once you have achieved this level, then reduce
your ascorbic acid by 500mg and your bioflavinoids by 250mg. This is
usu. the amt of vit C your body need at this time. The most common point
for this to occur is about 2K to 4K mg (2-4 grams) for people w/adrenal
fatigue, but I have known people that required 15K to 20K mg (15-20
grams) a day in order to reach this point. Typically, the more chronic
and severe your illness, the more vit C is necessary."



Among other interesting things Wilson says about Vit C here’s another
important one:



"Vit C, as it occurs in nature, always appears as a composite of
ascorbic acid and certain bioflavinoids. It is this vit C complex that
is so beneficial, not just ascorbic acid, by itself. Bioflavinoids are
essential if ascorbic acid is to be fully metabolized and utilized by
your body. The ratio of bioflavinoids to ascorbic acid should be apporx
1:2, that is 1 mg. of bioflavinoids for every 2 mg of ascorbic acid.
Bioflavinoids basically double the effectiveness of ascorbic acid in
your body and allow its action to be more complete. The kind of vit C
you use makes a difference. Vit C is much more than ascorbic acid."

Bruce Note.This is very consistent with Sherry
Rogers and Nutritional Healing which Sue and I are currently re-reading
and documenting sources in a new database
.

 

 

John:

1. DETOXIFY.  Toxins
need to be removed from the body.  This is not only an initial but an
ongoing process.  One simply cannot expect his body to perform as he
would like if there is a bunch of junk clogging it up. 

a.  Put good stuff in.  Avoid the three whites.  White rice, white
flour, and white sugar.  Processed foods are also to be avoided.  The
closer the food or supplement is to its natural state the better.  See
Diet section below.

b. Get bad stuff out.  Aerobic exercise is important. It not only gets
things moving inside of the body but causes you to sweat.  Sweating is
one way to rid the body of toxins.  I push myself.  I run.  If you can’t
run, do what you can.  I also bounce on a mini trampoline.  I believe
this gets toxins moving throughout my system.  I also take psyllium
fiber, and Jason Winters herbal tea,
http://www.sirjasonwinters.com/teas.htm both of which are intestinal
cleansers.  Daily coffee enemas are an essential part of my cleansing
program. The gallbladder is cleared and the liver is stimulated to work
more efficiently to cleanse the system of toxins.   Drinking adequate
water or teas is also essential to keeping things moving.  See Diet
section below.





2. VITAMINS, MINERALS, AND ENZYMES.  The human body needs vitamins,
minerals, and enzymes.  The right balance of nutrients balances the
sympathetic and parasympathetic systems.  It is generally accepted that
the best way to present these to the body is in the form of food–raw if
possible.  It is never sufficient to assume that supplements alone will
do the trick.  Foods lose a large percentage of their vitamins and
enzymes when heated.  The importance of enzymes cannot be
overemphasized.  Heat and processing destroy enzymes even more quickly
than they destroy vitamins.  According to nutritionists Mary Swope PhD,
David Darbro MD and others, enzyme destruction begins at 107 degrees F
and is complete when the temperature reaches 122 degrees F. See A Cancer
Battle Plan, Frahm, 1997, at 70.  The body not only receives enzymes
from outside sources, but also manufactures enzymes throughout itself
and especially in the liver and pancreas.  Enzyme supplements taken on
an empty stomach are very important to overcome a disease situation. 




Coffee enemas appear to encourage the production of enzymes within the
body since it stimulates the liver which is a major manufacturer of
enzymes.  In my case, coffee enemas are done on a daily basis.  Although
I found it hard to believe that something as bizarre as coffee enemas
actually worked, after two years of coming across it in my readings, I
finally gave in.  Much to my delight, my blood work showed significant
improvement after I began the enzyme supplement/coffee enema approach. 
It is extremely important to include supplements to replace the good
bacteria and flora which are lost through the cleansing process of the
coffee enemas.  I take two Garden of Life Primal Defense tablets [Garden
of Life
] morning and evening and eight

Megazyme
morning and evening as well as Ultra Flora Plus by

Metagenics
.  I also include plain yogurt, either goat or cow.

 

In terms of which vitamin supplements to take, I am somewhat in a state
of flux.  Historically I have taken a wide variety of vitamins.  I am,
however, impressed by the arguments regarding focusing on foods that
provide these vitamins and minerals.  Nevertheless, I do take up to 10
grams per day of ester C vitamin C, NAC, alpha lipoic acid, folic acid,
CO Q10, a multivitamin and mineral supplement, and a number of food type
supplements discussed in the diet section below.



3.  EXERCISE.  I consider regular aerobic exercise to be very
important.  It detoxifies.  It also helps to create an alkaline
environment.  Exercise creates demand for oxygen, which encourages the
body to produce more red blood cells and hemoglobin.  This is according
to a recent article by Ralph Moss which also suggested that exercise is
a way to avoid the need for Procrit.

CancerDecisions.com
-THE MOSS REPORTS: Newsletter (11/15/03) .

CancerDecisions.com
-THE MOSS REPORTS: Newsletter (11/22/03)



4. DIET.  Cars don’t run well on bad gas, and bodies don’t function well
on a poor diet.  There isn’t a magic pill to restore a person to good
health.  If one is used to the standard American diet (SAD) a lifestyle
change is in order. 



There are certain dietary things that clearly should be avoided.  The
three whites, processed foods, and alcohol are in that category.  I must
confess to some imperfection in that on occasion I still will eat a bowl
of ice cream, or a piece of bread, etc.–I allow for it.   If complete
perfection is the standard, I might be too discouraged when I fall
short.  



There are other dietary things that should always be included in a
healthy diet.  The consumption of raw fruits and veggies is also a
no-brainer for almost all of us. When cooking, steaming lightly is the
recommended approach. 



Drinking at least half of a person’s body weight in ounces of alkaline
or distilled water per day is essential.  I take mine in the form of
mushroom, herbal, and other teas.  The mushroom tea I drink is put
together by my wife and sister in law and includes mushrooms (reishi and
chaga) and other ingredients (dried red dates, kamcho, kugicha, chagyak,
and dang gwi) from all over the world.  These are traditionally used to
maintain health and fight sickness, especially cancer. 



Other parts of my diet are not so clear cut in terms of general
acceptance in the nutritional community.  According to Ralph Moss, most
patients of Dr. Gonzalez who have blood disorders should include animal
and fish protein in their diets. Dr. Gonzalez goes through a meticulous
testing procedure in which he evaluates a person’s sympathetic and
parasympathetic systems and prescribes a diet and supplement schedule
accordingly. I include meat and poultry (preferably organic and pasture
fed) in my diet.  I also drink raw milk.  The pasteurization and
homogenization processes are very hard on milk nutritionally.  Non farm
salt water fish is also something I consume.  I try to avoid fresh water
fish because of the higher risk of contamination.  Raw, unfiltered, cold
processed honey is actually alkaline producing, and contains important
enzymes. Royal jelly, bee pollen, and propolis are also excellent.  I
also take red ginseng, black sesame, and apricot kernels (amygdalin). 
Only a few apricot kernels per day should be consumed, however. 
Udo’s Choice 
is an excellent blend of flax and other healthful oils that I have taken
from the beginning.  In the morning I consume a vegetable juice blend
using a Vita Mix blender.  I generally use Jason Winters tea and green
tea (using alkaline water, of course) and include a variety of
vegetables, tomato paste, powdered shiitake mushroom, seaweed, powdered
ester C, and Green Magma barley grass. 



Cheri has also put together capsules of raw foods she has dried and
ground up.  These include barley, dandelion tops, dandelion roots, pine
needles, black beans, grape seed, dang kwi and brown rice.  Kyolic aged
garlic formula #102, is very highly thought of and something I use
daily.  I also drink Tahitian Noni Juice.



For snacks I eat raw veggies and nuts.  Organic, of course, is best.

According to my reading, there is also an order in which food should be
eaten.  Fruit should be eaten alone and on an empty stomach.  Vegetables
can be eaten with meat or with starch, but the three should not be
consumed together (sometimes easier said than done). 



5. ALKALINITY.  Cancer and other adult onset diseases do not thrive in
an alkaline and oxygen rich environment and are encouraged in an acidic
environment.  Some foods promote an alkaline environment and some
promote an acidic one.  Most fruits and raw vegetables are alkaline
producing.  Some things which are acidic, however, may be a necessary
part of a diet.  The body in fact is very skilled at maintaining the pH
of different organs within tight parameters.  Some organs, such as the
stomach and skin maintain acidic pH’s consistent with it’s designed
function.  According to Weston Price, some of the healthiest peoples on
earth had a diet that would be considered acidic forming.  I consume
meat, fish, dairy, and chicken.  This makes it all the more important to
consume large amounts of fresh fruits and veggies, which are generally
alkaline.   All this having been said, however, my thought is that it is
better to err on the alkaline side. Accordingly, I brew and drink large
amounts of herb teas, mushroom teas, green tea etc. which are all brewed
in alkaline water using an Alkalizer machine which separates source
water into alkaline and acidic components.  An interesting discussion
regarding alkalinity and health is found at the

Price-Pottenger Foundation








6. EDUCATION.  I listened carefully to the suggestions of qualified
health professionals.  Then I did my own research.  I continue to read
and learn.  I can afford to be less critical of something that won’t
hurt me.  I am more critical of a product that is recommended by a
person who wants to sell it to me.  I don’t assume that my best
information can only come from a highly degreed person.  Some of the
best suggestions I have received have come from experience-rich
non-degreed individuals who have information that makes sense according
to the principles presented above.  I especially value the positive
experiences of fellow travelers on the blood disease road.  I keep track
of my tests and continually evaluate my healing modalities on an ongoing
basis.  I try to be open-minded, since the best answer to my situation
might be outside of the box.  I try to listen and be sensitive to what
my body is telling me.  I never assume that I have arrived.  There is
always something to learn. 



7. RELIGIOUS FAITH.  My Christian beliefs have been a source of great
strength and comfort as I face the uncertainties of a potentially fatal
illness.  God has given me a peace beyond myself.  I believe that I’m in
a win-win situation.           



During my conversation with Marla in May 2004, I asked her how she is
facing the future.  Marla seemed to be surprised that I was even asking
such a question.  She stated to me that she has every intention to live
a long and productive life and is planning accordingly.  That answer
matches my feeling exactly.  Nevertheless, both Marla and I fully
understand that it is God who will make the final decision.  God has,
however, given each of us the tools to remedy the problems of life.  He
expects us to use those tools.



If you have any further questions or comments, please email me at
hessnhess@aol.com.



To your health,





John Hess


Bruce’s Current Journal