Alternative/Holistic Healing Center
Why should you listen to me?
I was diagnosed with Severe Aplastic Anemia, a
chronic and potentially fatal blood disease in January of 2001
and was given less than six months to live. After enduring
nearly every approach that conventional medicine had available
I was still in bad shape until I decided to help my body heal
itself through a more natural approach.
I was completely transfusion dependent,
receiving red blood cells every two weeks and platelets every
week. I was weak, unable to think, discouraged and
thought this was to be my quality of life forever. I
almost died three times and was taking 15 different drugs on a
daily basis. One day in August of 2001, I threw them all
in the trash and decided to take charge of my situation.
I embarked on a holistic approach to healing
that has produced amazing and positive results. I am now
95% of my old self, playing golf, exercising, starting a
business with a new partner and most importantly of all, have
a new found relationship with my wife, family, friends and
God. My last Red Blood Cell transfusion was on May 24,
2002 and my last platelet transfusion was on July 23, 2002.
The natural healing thing is working big time
for me and those of you who have followed my story know that I
was not always a believer. Today, I am a full time, card
carrying believer in the power of prayer, the attributes of
the healthy lifestyle I have documented here and the belief
that AA can be beaten! Hang in there and keep on keepin' on!
Bruce
SAA 1/2001 2X ATG failed
Alternative/wholistic healing
Now back to a full time regular person 11/2003
As Dr. Kenneth Bock states in
his book
The Road to Immunity, "No one therapy works all the
time, just as nothing is 100 percent preventive. When my
patients start out with an attitude of 'This is It', I
counsel them that healing is the result of hard work at many
levels, and their healing regimen
may involve many different treatments and approaches used
simultaneously."
What am I doing that works?
I am not a medical professional - I am a
reasonably well educated patient and have become my own
human guinea pig in search of a cure for Aplastic Anemia.
I am not selling anything or recommending any magic
formula or cure all. These are all free lifestyle changes
that may help you in your battle to regain control of your
immune system. A key element is that you must take
charge of your personal situation and think of your doctor and
other health care professionals as your aids. Think
about how much time your doctor spends with you in a given
week vs. how much time you have available to help yourself.
Even the most well meaning doctor may see you only 1/2 hour
per week and they have many other patients with dissimilar
maladies that they must try to help.
Certainly recognize that you will need a
doctor to handle the critical care and emergency situations
and to monitor your progress. You will also need
transfusions as long as your counts remain in a critical zone.
But while this is happening, take the time to explore the
alternatives available for taking control of your own destiny.
I personally intentionally avoided all the "quick fix" bottled
cure-alls and opted for a holistic and natural approach.
Over time, I have weaned myself off all medicines, drugs,
supplements etc. The only supplements I am still using
are to offset the nutrients drained from my body during sauna
and colon treatments. Otherwise, my approach is
completely natural and does not really cost me anything other
than purchasing whole organically grown foods whenever
possible and practical.
The fundamental strategy I have adopted is to
Provide a Healthy Environment to Allow My Body to Heal Itself.
- Take the time to read everything at my
site because it chronicles my journey and many others with
all the ups and downs -
http://aplasticcentral.com. Start and end with My
Journey and this Holistic Approach. I tried ATG and the
toxic drugs regimen, I was a candidate for Bone Marrow
Transplant and decided against it. I was also very close to
undergoing another toxic strategy using a drug called
cytoxin. I decided against all of them and have taken a
"Natural or Alternative Approach". The good news is that it
is not expensive - the bad news is you have to make radical
changes in your lifestyle and diet and it took almost 6
months before I stabilized. I am now transfusion
independent and have 85 % of my old life back!
- Read the books by Dr. Sherry Rogers that
can be found at either
http://amazon.com or
http://prestigepublishing.com.
If possible, start with an environmental or
chemical allergy doctor if you can find one. If not, maybe
go online and start with http://www.macrobiotics.org/default.html
and try to build from there using other links I provide at
http://aplasticcentral.com/Alternative_Medicine/alternative.htm
(bottom of page). Also check this website http://www.geocities.com/marlakins/index.html
- Marla uses a vegetable based diet and is very
knowledgeable on how virtually everything impacts our immune
system. I use a vegetable and macrobiotic combination.
Other very good sources that have been recommended by Marla
and others include:
http://www.gerson.org,
http://www.godshealthplan.com/healthtips/healthtips.html,
- Set a goal to become transfusion and drug
independent. Maintain the transfusion regimen because
it is necessary to keep you alive while you fight your
fight, but set goals to lengthen the time between
transfusion and then meet the goals (It takes time and there
will be setbacks so also be patient with yourself). As
of December 14, 2002 it has been nearly seven months since
my last blood transfusion and nearly four months since my
last platelet transfusion.
- Make the necessary lifestyle changes
based on the belief that AA is an autoimmune disorder and we
need to help our body rebalance its immune system. Avoid the
"quick fix" cures with herbs and shark oil or any "other one
stop shop for a cure" Many of them may help but it is
the understanding of a full program that will result in
success.
- Become at peace with your self and your
illness - If you are a "Type A", become a "Type B".
Dr. Bernie Siegel says that a positive attitude is perhaps
the most important ingredient in combating illness and
disease.
- Give your body the rest it is asking for
- Even if it means sleeping 10 hours a night - It is
literally battling for your life and needs all the help you
can give it. Take naps when you feel tired, but also push
yourself to exercise as much as you can.
- Get tested for toxins by the
environmental or chemical allergist and take the antigens
prescribed. Avoid people who smoke, use lots of
perfumes, gasoline fumes, etc. After a while you will
virtually smell and feel the things to avoid. Go for fresh
air and sunlight. Get a good air cleaner (mine cost
about $500) and use it to clean the air in your sleeping
room. Keep the dusts and pollens down.
- Find a regimen that will help eliminate
harmful toxins from your system (I take a daily sauna).
Clean up your personal environment. Get rid of carpets
(I moved to a different house with hardwood floors).
Avoid chemicals in your house and environment. Pay
very careful attention to your physical environment - Clean
air? (get a good quality air filter - $500) Mine is an
Austin Healthmate (Search on Austin Healthmate at
http://google.com and you'll find lots of places to buy
one) Avoid toxic substances (gas, cleaning fumes, etc).
- Exercise at least 45-60 minutes per day
You will likely have to build up to this as I could barely
walk when I started)
- What you eat is critically important and
we all seem to be constantly experimenting with this facet.
The one clear theme is what NOT to eat, i.e. processed
foods, fast foods, "enriched" flours, etc. I
personally subscribe to what I call a "rotational
mostly macrobiotic diet". As much as is humanly
possible, I eat Grains (30-60% of each meal), Greens
(25-30%) and Beans (10-15%). This means I eat lots of
Healthy Brown Rice, Oats, Barley, etc. I also try to
eat only organically grown fresh vegetables and many say you
should not even cook the vegetables (strictly raw fruits and
vegetables) and I eat beans prepared from scratch
(black, red, navy and a few others). I also eat a
limited amount of meat including turkey, chicken and fish.
(Once in a while I have pork even though I know it is not
good for me, but it is a serious weakness.) I have
successfully gotten off beef. I am quite sure
that everyone's situation is a bit different and you
probably need to experiment with different wholesome
foods to see what it is your body needs. After a while
you can actually feel what is good and what is not.
Obviously avoid smoking, caffeine, drugs or any kind,
processed foods (especially sugar), fast foods - All the
things your mother told you would be bad for you!
- I drink only fresh spring water courtesy of my In Laws.
They have a natural spring on their property and we make a
weekly trip to their property and then refrigerate the
water. I strenuously avoid soda, caffeine drinks,
sweetened drinks, etc.
- I also must tell you that I do a daily colon cleansing
routine using a coffee enema as prescribed by Dr. Sherry
Rogers in her books "Tired or Toxic." Yuk, Ugh, etc. but it
works. Here is the
procedure and history.
- Research and read everything you can find
that discusses these alternative approaches and decide what
will work best for you and be willing to a make the
necessary changes. Keep a journal so you can refer
back to it. You will definitely feel overwhelmed and
confused at times. That is one of the reasons I keep
this website active and chronicle all my successes and
failures. If you falter, regroup and start over.
- Do not lose hope or become discouraged
because your outlook is critical. Maintain a positive
attitude - When you lose you way, come back and read the
success stories and words of hope at my site.
- Find spiritual peace - I became active in
church and strengthened my faith in God after drifting away
for a long time. Everyone of us needs three things:
Someone to love, something to do and something to hope for.
- Do a personal fund raiser - I had a golf
tournament and raised the money I needed to attend the
treatment center in Dallas (EHCD) and cover expenses not
covered by insurance. My wife, daughters and friends
organized it and it was very successful. I had a second one
primarily to let people know that their kindness worked. It
was hundreds of people giving small amounts but added up to
a big enough number to cover my expenses.
- Keep up with the forum and become an
active participant. Surround yourself with positive
people and bombard yourself with positive thoughts.
- Seek God's Blessing and Good Luck in Your
Endeavor!
Alternative Healing Links Courtesy of Buddy Jack & My
Searching
The remainder of this
page documents how my approach has evolved and offers
additional resources.
January 18, 2003 Addition
According to an article in Syracuse Parent and
Family a recent study published in the Journal of Agriculture
and Food Chemistry by scientists witht the Department of
Agriculture and Cornell University, the polyphenols in purple
(red) grape juice can inhibit the the uptake of iron, which
could increase the risk of iron-deficiency anemia.
The study appears in the Nov 6 issue of the journal and the
lead scientist is Raymond P. Glahn. The study was conduceted
on mice and has not yet been tested on humans - BUT, I have
used myself as a human guinea pig all aong, so what harm can a
little extra grape juice do?
I'll let you know if my iron counts get closer to normal - I
think they were around 900 or so at last check - will verify
and report in March or so.
Thanks Sue!
November 24, 2002 - EHCD Explained
http://www.ehcd.com/websteen/dallas_trip.htm
I have visited the ehcd site several times,
but failed to find this very good explanation of the process.
This is very similar to what I went through.
November 24, 2002
If you are looking for a doctor who can help
you diagnose environmental issues, try this link:
http://www.aaem.com/ or you can contact them here:
7701 East Kellogg, Suite 625
Wichita, Kansas 67207
Tel (316) 684-5500 Fax (316) 684-5709
E-mail
administrator@aaem.com
November 23, 2002 - Provide a Healthy
Environment
I have been thinking about something Sue
mentioned several months ago. She said that I needed to help
my body heal itself. In my slow witted way, I am
beginning to understand what she meant. It is my job to
provide my body with an environment in which it can heal
itself. It is taking a long time, but I think it is
definitely the right way to go. The previous and more
conventional attempts try to rush the process and often times
do more harm than good. My body had been telling me for
a long time that something was wrong but rather than take the
proper actions of reducing stress or eating more healthy
foods, I pressed on and made it worse. Now I understand
that in order for my body to win the battle against aplastic
anemia, I must continue on my chosen course and be patient.
There are several new and good pages above that were mentioned
by Marla in the forum. I copied them here in case the
links disappear some day (which often happens) The original
links and several other interesting articles can be found
here:
http://www.godshealthplan.com/healthtips/healthtips.html
October 28, 2002 Online Holistic Books
http://www.soilandhealth.org/index.html recommended by
Marla
This is a free public library offering a
tightly focused collection of books on holistic agriculture,
holistic health, self-sufficient living, and personal
development. Most of the titles in this library are out of
print. Some can be quite hard to find; many of these books are
old enough to be public domain materials. Yet all are still of
great relevance. Grasped as an inter-related whole these books
constitute a self-guided course of study or curriculum that
connects agricultural methods to the consequent health of
animals and humans, shows how to prevent and heal disease and
increase longevity. There are also smaller collections about
homestead-based lifestyles and about why globalized society is
resistant to changing its food and health systems.
Where you can buy Dr.
Sherry Rogers's Books:
www.prestigepublishing.com
Where you buy other
books: http://amazon.com
October 27, 2002 - Evolving to a Holistic
Approach
I recently realized that I have adapted much
more than an "alternative" approach to my healing process and
have evolved into more of a holistic approach so will expand
this section to include other elements of the holistic
approach.
Holistic Medicine is defined by the Canadian Holistic Medical
Association as follows.
Holistic medicine is a system of health care which fosters a
cooperative relationship among all those involved, leading
towards optimal attainment of the physical, mental
emotional, social and spiritual aspects of health.
It emphasizes the need to look at the whole person,
including analysis of physical, nutritional, environmental,
emotional, social, spiritual and lifestyle values. It
encompasses all stated modalities of diagnosis and treatment
including drugs and surgery if no safe alternative exists.
Holistic medicine focuses on education and responsibility
for personal efforts to achieve balance and well being.
Other Terms Associated with Holistic
Medicine
- Alternative Medicine is often used by
the general public and some healthcare practitioners to
refer to medical techniques which are not known or
accepted by the majority "conventional" or "allopathic"
medical practitioners (usually M.D.'s). Such techniques
could include non-invasive, non-pharmaceutical techniques
such as Medical Herbalism, Acupunture, Homeopathy, Reiki,
and many others. However, the term Alternative Medicine
can also refer to any experimental drug or non-drug
technique that is not currently accepted by "conventional"
medical practitioners. As non-invasive, non-pharmaceutical
techniques become popular and accepted by large number of
"conventional" practitioners, these techniques will no
longer be considered Alternative Medicine.
Alternative Medicine refers to techniques that are not
currently accepted by "conventional" practitioners, but
what is currently accepted is quickly changing. Even the
definition of "conventional practitioners" is quickly
changing. Therefore, techniques that are now considered
part of Alternative Medicine will soon be considered part
of "conventional" medicine. The terms Holistic Healing and
Holistic Medicine are slightly more stable than
Alternative Medicine and are therefore preferable.
- Complementary Medicine is often used
by "conventional" medical practitioners to refer to
non-invasive, non-pharmaceutical techniques used as a
complement to "conventional" medical treatments such as
drugs and surgery. The term implies that "conventional"
medicine is used as a primary tool and the non-invasive,
non-pharmaceutical techniques are used as a supplement
when needed.
In many cases, properly chosen non-invasive and
non-pharmaceutical healing techniques plus properly chosen
lifestyle changes can completely and safely heal both
acute and chronic illnesses. In other cases,
"conventional" medicine is only needed in emergencies or
when the safer non-invasive, non-pharmaceutical methods
fail. In some cases "conventional" medicine will be a
major part of a Holistic Healing Plan, but in some cases
it is not needed at all.
In addition to the alternative medical
treatments, I have explored and will continue to explore other
elements involved in the total healing process. I am
starting with reading the information at the following links:
http://www.holisticmed.com
http://www.mv.com/ipusers/howell/ejh/
and have already attempted some of the yoga
techniques and positions. I have a ways to go but I already
know that I am recovering some of the suppleness I had many
years ago. I can now fully extend to my toes and beyond
both sitting and standing. Prior to starting my exercise
regimen, I could barely reach my ankles, I am now putting
complete palms on the floor and am getting back to where I can
almost do the hurdler's exercise for my hamstrings.
In my personal case, I am not inclined to want
to use herbal treatments and I am minimizing my use of
vitamins and supplements. I am zeroing in on ways to get
the nutrients my body needs from natural sources. I am
avoiding sugar, dairy products, meats, caffeine, etc. (all the
things we know are bad for us) and staying pretty close to a
rotational grains, greens and beans diet. I am reducing
the stress in my life, meditating, exercising and am finding
inner peace. My next adventure will be yoga.
October 27, 2002 - Healing the Gut
Based on several recommendations by Marla, I
have done some reading at the
Dr. Mercola site and highly recommend you spend some time
there. Dr. Mercola also directed to the link below which does
an excellent job of describing how the digestive system works.
I don't necessarily agree with his herbal and spinal approach
to healing the gut (I am still a Dr. Rogers macrobiotic diet
and coffee enema fan because it is working for me), but the
explanation of the process is very good.
http://www.thedoctorwithin.com/index_fr.html
I must also again thank my wife, Sue for
urging me to follow this course. I can be very stubborn
and critical of things I don't understand. The more I
read and experience about the approach described by Dr. Rogers
and recommended by Sue, the more I believe!
October 26, 2002 - Updates
I recently added and/or updated the following
pages that directly tie into the alternative/holistic healing
approach:
http://aplasticcentral.com/healing.htm
http://aplasticcentral.com/Sauna.htm
http://aplasticcentral.com/Alternative_Medicine/Nutrients.asp
http://aplasticcentral.com/Alternative_Medicine/Sources.asp
October 14, 2002 - Macrobiotic Issue
According to Reader's Digest Foods that Harm
and Foods that Heal, (P, 16), "Another dangerous dietary
approach entails following a macrobiotic regimen, especially
one that is restricted to brown rice and a few vegetables.
Such a diet can actually worsen AIDS, because it fails to
provide adequate nutrition." The modified rotational
diet still seems right to me. I eat a little chicken,
lamb and pork about once a week. I also eat more
vegetables than recommended on the true macrobiotic diet.
Taurine is one of the first supplements they put me on in
Texas even before they knew my levels. I took it for quite
awhile but when the bottle emptied I stopped (along with most
of the other stuff they had me taking). I felt like I had
swapped drugs for supplements taking way too many of them
every day. I am now down to just a few and do not take any
aminos any longer. I thought at one time that a deficiency in
threonine, arginine and cystine were causing the cd34 marking
for cell destruction but have been unable to prove that. I am
off on some new research and will likely be spending several
hours in the health science library at Syracuse University
next week.
TAURINE (Non-Essential Amino Acid)
Helps stabilize the excitability of
membranes which is very important in the control of epileptic
seizures. Taurine and sulfur are considered to be
factors necessary for the control of many biochemical changes
that take place in the aging process; aids in the clearing of
free radical wastes.
September 8, 2002 - Further Evidence of the
Alternative Approach Success:
Editorial comment: I am reporting my
success as an inspiration to others. I am not
boasting or "rubbing it in". I merely want
those of you are losing hope to realize that we can
beat this illness and at least for now, I am living
proof
So.... Yesterday, I arose at 6:30,
showered and dressed and arrived at the golf course
at about 7:30 AM. My partner- brother-in-law
and I, shot at combined score of 72 to tie for
the lead in the top flight of our member-guest
tournament. We then played an additional 9 holes and
are still tied for the lead - I played 27 holes of
golf in 90 degree weather and had enough energy left
to go out to an anniversary celebration dinner,
watch some SU football and finally fall asleep about
midnight. Can you imagine? Last
year at this time, I could not even walk up six
steps without grabbing a wall to steady myself. This
morning I arose again at 6:00 and a ready to go at
it again.
August 31, 2002 - It's Working!
I am actually running up stairs and easily
walking up hills. Throw out the drugs and get on the
alternative band wagon! I am finishing up a one week
trial visit with my daughter, son-in-law and grandson in North
Carolina. As soon as it snows in CNY, I am heading south
as I believe that fresh air and sunshine are a necessary part
of my treatment protocol.
August 12, 2002 - More on What is
Working for Me
I had another very good Dr. visit so
am really beginning to believe in my approach.
Counts are holding and now I will focus on trying to
reverse them rather than just hold them.
A couple of things I often
forget to mention:
Importance of daily exercise and
sunshine. I do 30 minutes of walking and light
weight lifting almost every day and I also make sure
that I get at least 2-3 hours of fresh air sunshine
every day (not always easy in CNY so will likely be
spending the winter in a different climate). I
also updated by Vitamin and Supplement intake at
http://aplasticcentral.com/Alternative_Medicine/vitamin.htm.
I have modified this list fairly extensively based
on personal results and input from others.
I am adding COQ10 back and dropping
the B complex after seeing that all the stuff in the
B complex are replicated in my multi. One
thing I had forgotten about is the necessity to take
the multi a couple of times a day so will start that
today. I also must tell you that I do a daily
colon cleansing routine using a coffee enema as
prescribed by Dr. Sherry Rogers in her book "Tired
or Toxic."
I try to drink only fresh spring water
courtesy of my In Laws. They have a natural spring on
their property and we make a weekly trip to their property and
then refrigerate the water. The only other thing I drink
is the water on the golf course which I should avoid, but
forget to bring my own. I strenuously avoid soda,
caffeinated drinks, sweetened drinks, etc.
I also heard a news tidbit the other
day that advised against exercising in the AM as it
supposedly works against the immune system.
Supposedly it is better to exercise in the PM as
there is a hormone generated in the AM that
negatively impacts the immune system. Will try
to change, but the morning really works out better
in my routine. Also must mention the change in
my lifestyle. I have definitely changed from a
"Type A" to a "Type B" and have consciously reduced
the stress in my life.
All of these changes and my daily
routine are working well and it is time to summarize
and synthesize which will be my next project.
August 3, 2002 Documenting What Works for
Me
If you have been reading my journal or
discovered this in a different fashion, this area has been
used to document my progress with an alternative approach to
healing my immune system after contracting aplastic anemia.
I decided to summarize my approach to save you the reading of
the entire section, so here goes:
I was diagnosed with AA in January of 2001 and
spent the first six months going through ATG (2x),
cyclosporine, steroids and a whole bunch of very toxic
medications. I almost died 3 times, got serum sickness,
septocemia and finally decided to listen to my wife's advice
and try a different approach. She is a Registered Nurse
and has been a patient of Dr. Sherry Rogers, an Environmental
Allergist MD here in Syracuse. After hearing of my
symptoms, Dr. Rogers recommended that I contact Dr.
William Re at the Environmental Health Center in Dallas, TX.
I was extremely skeptical about the approach, but after much
cajoling, decide to make the trip to Dallas.
We spent about two months in Dallas where I
was tested for many different things and was eventually placed
on a regimen that I believe is now working for me. One
of the primary messages is that my immune system was out of
whack and probably had been for many years. The regimen
is designed to get my immune system back in balance through
the use of antigen shots, a rotational diet and detoxification
program which is based primarily on an infrared sauna.
I have essentially developed my own strategy
which is primarily based on this regimen but also includes a
good exercise program ( exercise at least 30 minutes a day
using various stretching, walking and light weights), lots of
fresh air and sunshine. I eat mostly "grains, greens and
bean" which means I eat a lot of lettuce, rice and beans
of various sorts. I take a muti-vitamin daily, a B
complex supplement (may be modifying that based on recent
input from Marla), Code Liver Oil, Every day Essential oils
and magnesium for my leg cramps. See
http://aplasticcentral.com/Alternative_Medicine/vitamins.htm
for my current Vitamin and Supplement regimen.
I am now at a point where I am strongly
recommending this approach as I now have a full year of
experience. I have gone through many phases and still
struggle with the discipline ( I cheat once in a while just to
maintain my sanity), but now firmly believe that this
"alternative approach " is the "secret" to my success in
battling aplastic anemia. I am not selling any live
saving supplements and have no axe to grind. It just
works and I encourage everyone to give it a shot.
August 1, 2002 OK To Get Excited!
Main Dr. Jeff (Kirshner) says that it is
excellent news that I have gone 70 days since needing blood
and my hematocrits are holding at 28. I wasn't sure and
was pretty tired on the golf course the other day. He
says it was probably the heat and that I need to be more
careful than others re to playing in the heat. Although
28 is good for me it is still well below normal (40-60).
But net, net is I am making progress with the alternative
strategy and he says just keep doing what you are doing
because it appears to be working! The RBC's are now
MINE!
July 20, 2002 Success is at Hand
It has now been over twelve months since I
decided to forego the cyclophosphamide and battle AA on my
terms. With encouragement and guidance from my wife, I
am now becoming a true believer in in the power of alternative
therapies. I am still pretty much on the rotational
macrobiotic diet, take multivitamins, magnesium, cod liver oil
and essential oils on a daily basis. I was taking a lot
more supplements but have dropped back to just the few
mentioned previously.
I also give myself daily antigen shots and the
Alpha Lymphatic Factor as prescribed by Dr. Re Re. I do
the sauna at least 4-5 times per week and also a bowel
cleansing routine with, of all things, coffee as recommended
by Sherry Rogers. I am not about to knock something that
appears to be working.
I am truly feeling better every day and my
time between transfusions is increasing on a regular basis (It
has been two months for blood and 3 weeks for platelets) vs my
previous routine of two weeks for blood and 1 week for
platelets. I am stronger, have virtually no limitations
and have a much better outlook on the whole situation.
If you are interested, you can view my daily
menu at
http://aplasticcentral.com/Aplastic_Menu/Aplastic_menu.htm
May 5, 2002 Back on the Program
I have now been back on the Dr. Re alternative
program for about two weeks and hope to stay with it for at
least 6 months. I was all set to go for cyclophosphamide
and the docs essentially talked me out of it saying I looked
good and should hold off. So starting April 16, I
started on a full blown macrobiotic diet consisting primarily
of "grains, greens and beans." Also take the antigens
prescribed in Texas and something called ALF - Alpha Lymphatic
Factor which supposedly is using an extract from my own blood
to help restore my immune system. I am still quite
skeptical but figure it is worth a try. I am pretty
confused at the moment as it seems that there so many
alternative approaches and so many things that work against
me. (see my journal of May 2 for more details).
Marla and others have been helpful. Here is a post from
her responding to my May 2 journal entry that is definitely
worth sharing with anyone considering an alternative approach.
Hi Bruce:
Read your latest update and
again can relate very much with your conflicts. I had
avoided leafy greens for some time because of the iron issue
but was also torn with the knowledge that green leafy
vegetables are claimed to have other beneficial attributes.
The approach I took regarding chosing what to do and not to
do was based on what benefit I could obtain overall.
(After all, that's what conventional medicine does also.)
I know that you already understand the concept of trying to
get the body back into balance for optimal health and that
detoxification is necessary. However, in addition to
that, I viewed all of the body as working together as a
whole, so I would try to work on overall health, not just
what boosts blood counts. For instance, along with the
bone marrow, other parts of the body are instrumental in
blood production such as the kidneys and liver.
(Actually, this is what Chinese herbalists focus on with
their herbs--restore the health of the liver and kidneys
because they think that is the root to many cases of blood
production failure. That is also one reason they treat
many blood diseases similarly with herbs because they are
trying to clean and restore the health of the liver and
kidneys. This was one of my conflicts with accepting
any conventional medicine because "all" the conventional
treatments are toxic to the liver and kidneys.) You
may know that patients with kidney problems frequently have
blood problems as well. My husband had read that there
are actually hormones made by the blood vessels and the
kidneys which is believed to signal the bone marrow to
produce blood. With that information, I endeavored to
increase the health of my kidneys. According to Dr.
Norman Walker author of Fresh Vegetable and Fruit Juices,
cucumbers aide the urine production which helps the body rid
itself of excess uric acid. Lemon is also
thought to be a good kidney and liver cleanser.
Romaine lettuce, according to Dr. Walker, has been found to
contain properties that aide the function of the adrenal
cortex (which is located right on top of the kidneys).
Iron appears to be one of the smallest components of romaine
lettuce. Other components romaine lettuce has which
are more abundant are calcuim, magnesium, potasium,
phosphorus, sluphur, silicon, chlorine, sodium, oxygen,
hydrogen, nitrogen, distilled water, protein, carbohydrates,
fats, vitamin A, C, Thiamin, Riboflavin, and Niacin. I
believe there are likely other components that are unknown
in lettuce yet are there which make all those nutrients more
usable by the body. Now, if you are uncomfortable
taking lettuce, I definitely understand as I was also.
I've had to do things as trial and error since I didn't know
anyone with my condition who already documented their
results. Since my progress was so slow, I wanted to
try something else, so I started to eat and juice romaine
lettuce and have found that it did not raise my iron level.
Actually, it has remained the same, and I felt better.
I don't know if it was a coincidence or if in fact it was
the lettuce juice, but after I started juicing lettuce for a
while, my hemoglobin started to hoover. I have not
used desferal for six months now. (If my ferritin
doesn't start moving down more, I may try phlebotomy
provided my hemoglobin levels remain good. But, that's
another issue. I'm currently working on getting my B12
in range and have a suspicion that the desferal may have
removed some of my B12 stores. I haven't confirmed
that thought.) My iron is still way too high at 1700
from latest check last month, but down from 1758 from the
test the month prior to that. I have been juicing four
heads of romaine a day as well as eating at least one salad
a day. (I have recently reduced that to one salad most
days. I'm planning to update my "sample diet for a
day" on my site.) I'm trying not to be long-winded
here, but it's hard for me to explain everything clearly
without going back and forth and sticking in "asides."
Basically, my reason for trying the lettuce was if I could
get the benefits of the lettuce at the expense of taking in
more iron, well, as you know iron can be removed. It
is thought to take years for damage to occur and have you
known of anyone getting iron overload from lettuce?
The blood transfusions are far worse. You need to give
your body what it can use. (BTW, I don't use
spinach.)
Regarding lentils, I
didn't know they were used for blood thinning, however, I
did and do have them occasionally and seem to have no
problems with them as far as bleeding or petechia.
However, if protein is what you were using them for, there
are other sources that you can use instead. I don't
think you'd be missing a whole lot if you omitted them from
your diet. The things I have generally stayed away
from are shitake mushrooms or mushrooms in general, spinach,
golden seal, echinachea, and too many beans. One thing
I think affects me with blood thinning is using too much
cayenne pepper. I do still use it, but I don't use a
lot at once because I think it did contribute to a slight
nose bleed once which is pretty uncommon for me, but quickly
resolved. I use garlic moderately for the same
reason.
Going back to the lentil issue,
are you presoaking your grains? I have read that you
should pre-soak your beans and grains such as rice and wheat
to deactivate their enzyme inhibitors and increase their
nutritional value. I've attached part of an article
below for you regarding this.
SOAK THOSE GRAINS
Two recent studies support the health benefits of traditional grain
preparation methods. Japanese scientists found that rice that has been
soaked for a day before it is cooked contains more fiber, minerals and
vitamins than non-soaked rice. The soaked rice also contains triple the
amount of lysine, an important amino acid, and ten times more
gamma-aminobutyric acid (GABA), a nutrient that benefits the kidneys.
(Neutralization of strong chelating complexes such as phytic acid
explains
the paradoxical increase in mineral content.) A 22-hour soaking in warm
water allows the rice to begin the germination process, during which
there
is a proliferation of nutrients to feed the growing plant. The soaked
rice
was easier to cook and tasted sweeter (Reuters 12/12/01). In another
study,
three groups of rats were fed three different sorghum porridges. One
group
received sorghum flour, milk solids and cane sugar cooked in water. A
second
group received the basic porridge inoculated with germinated grain as a
source of amylase. The third group received the basic porridge
inoculated
with lactobacillus plantarum to generate lactic acid for 24 hours before
feeding. After four weeks, the third group of rats had better growth.
All
groups took in the same number of calories but fermented porridge had
higher
protein values (Ahrens, FASEB Abstract, 1989). These studies highlight
the
importance of grain fermentation in countries where protein is scarce.
Unfortunately, in Africa, where fermented porridge and beverages were an
integral part of the diet, missionaries and health workers discouraged
their
use because they may have contained small amounts of alcohol. They also
have
a short shelf life and cannot make a profit for large corporations.
A quick note on juicing.
The main purpose for it is to get the maximum amount of nutrients into
your body quickly. By juicing, you separate the fiber from the
juice so that your body doesn't have to work at digestion. (That's
why you use a juicer and not a blender.) Theoretically, you're
body spends much time and energy digesting food and only takes about 30%
of the nutrients through digestion whereas juiced fruits and vegetables
require no digestion and the body is able to use almost 90% of the
nutrients. Since no digestion is involved, it is believed that it
goes quickly into your blood stream. In that respect some use
juicing as medicinal treatment.
Sorry to hear about your central
line problems, but when I had my PICC removed and got a
routine going, it went very well for me. I made sure I
knew where the veins were that the nurses seemed to be able
to hit at the first poke. I have pretty good AC veins
(the ones in the bends of the arms) which I reserved for the
nurses that I knew weren't as good. I reserved the
harder spots for the really good IV nurses. I had
about 6 areas that I would rotate so that I could give each
site at least three weeks to heal in between transfusions.
My sister also had me exercise my arms with those squeeze
balls. (My sister is an RN too and actually started my
IV's a couple of times because she couldn't stand to see it
when they missed the first time. But, until I got my
system going, I had my days of playing voodoo doll.)
Also, I made sure I was well hydrated since that helps to
plump up your veins. When I used my AC veins, I made
sure I kept my arm straight as much as possible to prevent
any scarring. Scarring, as Sue probably has already
told you, makes veins harder to access. I had
developed a sensitivity to the tagaderms so they used a ace
type wrap that held my IV in place. (I forget the name
of the wrap, but Sue probably knows what it is.)
Lastly, if it were me, I would
look at your latest BMB and compare it to your previous one
and decide for yourself whether you're having "minimal"
improvements or not. Doctors tend to look at things
differently than we do. The comment of the "proof is
in the platelets" makes no sense to me. If you end up
making your own red blood and your white counts starts to
look good even if your platelets are still low, that's
improvement no matter what the platelets say. I would
take a look at the results myself and decide.
Okay, don't mean to talk you're
ear off again, but there's so much to consider. I've
made my mistakes along the way, but I still made
improvements along the way too. I'm still learning and
trying to fix my oversights.
Take care, and good luck!
Marla Brown
December 8, 2001
I am not following the regimen as closely as I
did while in Texas, and I can feel myself backsliding. I
am desperately trying to get back on the program, but it is
much more difficult upon returning to normal society. I pretty
much lived in a bubble while in Dallas, going from my
toxin-free condo to the clinic and back. Did not venture
out much and my exposure to people was almost completely about
MCS, treatments etc. No way to live, but it was working.
We have now assembled about 5 pounds of
documentation on the alternative strategy, chemical toxicity,
etc. There is a current copy of our letter elsewhere on
the site and the book list lists most of the docs we
referenced. We also received a very good letter from Dr. Rea
who described how the therapies should work (I will scan it
and get it on the site later today hopefully) - now I just
need to stay on the program and hope it works.
Sauna is in town and will be picked up on Monday.
December 5, 2001 - A
Retrospective
Looking back on the EHCD
experience, I do have to admit that I feel unbelievably better
and that something they did must have worked.
Unfortunately, the counts are pretty much the same but I am
stronger, able to concentrate and have a better outlook on my
situation. As reported previously, I am very
disappointed in their inability to effect my counts, but I am
hopeful that my being stronger and continuing their regimen
will make other attempts at a cure more tolerable. I hear bad
things about what happens to your body in both cytoxan
chemotherapy and the BMT so whatever it is that I must endure,
I will continue the EHCD protocol as long as possible.
October 18 Update - "The
Truth - Always the Truth"
In summary, I am pretty
disappointed at the moment. I have spent nearly $20,000
and my counts are no better than when the day I arrived at the
Environmental Health Center of Dallas. I may be
impatient, but it would seem to me that after over two months
of eating a restrictive diet, getting poked in the arm an
average of 15-20 times a day, "depurating" (exercise,
sauna,massage), taking God knows how many tests, IV Therapy,
Oxygen Therapy and virtually everything they offered, my
counts would have improved.
Vitamins being Taken. THEY DID NOT!
Now, if my objective had been
to detoxify and "balance my immune system", then I would have
to say that it probably worked and may even recommend the
place to others, but at least for now, I would have a very
hard time recommending it to anyone who has a serious disease
like AA. Most of the people here have allergies or have
somehow been exposed to toxins and or chemicals,and more than
a few are just whacko. I needed to get out of here
before I became one of them!
So - on to the next attempt.
I will meet with folks in Rochester in the next few weeks and
seriously evaluate the cytoxan treatment again. It still
scares me but this alternative healing strategy is not getting
me anywhere. What it did accomplish was to rid my body
of cyclosporine and all the other crap that conventional
treatments were loading it with. Even my counts are in
the tank, I am stronger and can think more clearly than at any
time since contracting the illness. By default, the
natural approach still probably has a few weeks to go and I
may even give it to the end of the year. "Immunosuppresant
Theary" (ATG/Cylco, etc) got six months so we'll give "Immune
Balancing" six months and then it's on to "Kill the Marrow and
see if my body will Replace It" (Cyclophosphamide).
Great options from a country than can go to the moon but not
cure the common cold! I must say that I am less and less
impressed with "modern medicine"! I already know more
about Aplastic Anemia specifically and Autoimmune Diseases in
general than every Doctor I have met and I have only been
studying it for a few months - and I'm not getting paid over
$500/hour to convince people to try the latest treatments that
don't even work- Must be I'm in any anger phase!!!
END OF UPDATE
"The doctor of the future will give no
medicine but will interest his patients in the care of the
human frame, in diet, and in the cause and prevention of
disease" Thomas A. Edison
WARNING -
This is my personal approach to dealing with my illness and I
don't even know yet if a natural alternative approach will
work. If it does, I'll sing it's praises from the
highest hilltops. If it doesn't I will also report it's
shortcomings.
See Natural/Alternative Links Below
The National
Institute Of Health Office of Alternative Medicine
(888-644-6226) is funding a number of studies to confirm the
efficacy of some treatments. Their budget has grown from 2
million in 1992 to 100 million for 2001. According to their
latest statistics one third of Americans now use alternative
treatments. 83% used these in combination with conventional
medicine. In certain rural populations and in Europe the
statistics reach 70%. There are move visits to alternative
practitioners than primary care physicians.
I definitely recommend the following site if
you want to investigate alternative treatments for a similar
disease.
http://www.itppeople.com/aboutalt.htm ITP sufferers
apparently have been ruled out of the Aplastic Anemia
labelitis (we don't understand it so let's make up another
name) and just have platelet problems.
August 4, 2001 - Started Macrobiotic Diet
August 9,2001 - Stopped taking toxic
medications
August 18,2001 - Arrived in Dallas courtesy
of Liz and United Airlines
August 20,2001 - First meeting with Dr. Rea
Monday
The first thing he had me do is try to stand
on one leg and walk heal to toe in a straight line. I
could not. It was though I was intoxicated (I am - my
brain is not functioning properly because of all the toxins in
my body). No recommendations yet. We will test and
test and test and then we will devise a strategy.
Background
My wife is a Registered Nurse and has been
studying Environmental Illness for well over 20 years.
She has seen first hand the differences between conventional
drug oriented treatments and more natural approaches for
herself, our daughter and many others. It has taken me a
long time to accept what she has been trying to explain to me,
but I am becoming a believer in the philosophy that big
Pharmaceutical companies manipulate our attitude towards
healing in the same fashion that the tobacco industry lures
children into smoking. Most MD's freely admit that they
know very little about natural approaches to healing (they do
no teach it in medical school) and in fact are most often only
treating symptoms.
Since being diagnosed with Aplastic Anemia in
January of 2001, the conventional treatments did nothing but
make me sicker. I was on steroids, cyclosporine, ATG and
a host of other meds designed to treat the side effects of the
former. I felt lousy, developed arthritis, had severe joint
pain, diarrhea, headaches, cramps and all kinds of other minor
symptoms. Since completely dropping these meds, I feel
much better and although my counts remain the same, I am
hopeful that I am finally taking charge of my situation.
After reading the 100 Days by David Biro and finally seeing
the terrible side effects of BMT in real people I am very
reluctant to subject myself to this strategy. Instead, I
will exhaust all other alternatives.
The first "alternative" approach is in process
- I have dramatically changed my environment and my eating
habits. I am living in a chemically safe apartment
that is very sparsely furnished, has no carpets, has a
filtered air system and I can actually feel a difference.
We are on a very restrictive rotational diet designed to
isolate foods to which I may be allergic. We have four
different plans which are rotated over four days. For
example, today I eat bananas and almonds for breakfast; lentil
beans, carrots and onions for lunch; and chicken, green beans
and sweet potatoes for dinner. This part is the most difficult
for me as I was a fast food junkie and ate lots of meat and
potatoes.
I have also become a patient of Dr. William
Rea, a leading practicioner of Natural Healing and the founder
of the Environment Health Center Foundation located in Dallas,
TX.
http://www.ehcd.com
He suffered from chemical illness himself and
has developed a program to assist others in healing their own
bodies. I was on a detoxification program and
macrobiotic diet for two weeks before coming to Texas and have
now been on the rotational diet for two weeks. I am starting
to feel a little better but unfortunately still have a long
ways to go and am having a real hard time accepting the
necessary changes.
So - here's the deal - I will continue on this
protocol for at least another two months and look for
improvement. I will investigate all types of natural
healing and reports what I find here. Please feel free
to contact me with your thoughts, suggestions and ideas.
This may not be for everyone, but it is something I have to
try and I hope that if it works, it will help others.
Update August 28, 2001
My counts remain about the same (so no harm
is being done) but I feel much better (none of the ugly side
effects of cyclosporine and others). I am not yet in any
position to recommend this approach to others but am using
myself as a human guinea pig I guess and will certainly let
everyone know the results.
So far what I have done: Started by dropping
all meds about a month ago (subsequently read that this should
be a tapered strategy rather than cold turkey); went on a
macrobiotic diet recommended by Dr. Sherry Rogers (my wife's
Environmental Illness MD) in a book called "The Cure is in the
Kitchen" (See Book List) consisting of "Grains, Greens and
Beans" and did the detoxification process she recommended. I
felt lousy for awhile but then better as I dropped all meat,
dairy and what she calls "deadly night shades" (peppers,
potatoes, cucumbers and tomatoes). The meals were dreadfully
bland, but I think it helped clear out my GI system.
Then on her recommendation came to Texas and
began testing with Dr. Rea - He is a world renowned Clinical
Ecologist and has written 4 volumes on dealing with Multiple
Chemical Sensitivities. Learn more about him and his center at
www.ehcd.com.
Have started on a "rotation diet" in which
we eat somewhat normal foods but restricted to certain foods
each meal, i.e. yesterday we had eggs and pineapple for
breakfast; lettuce, walnuts and alfalfa sprouts for lunch and
hamburger, potatoes and peas for dinner - no ketchup or other
spices. This is by far the most normal day of the four
rotational days. Other days we have had quinona for breakfast,
spinach for lunch and salmon for dinner. I am also undergoind
many tests: being injected with minute amounts of various
chemicals to determine if i am sensitive to anything (formeldehyde,
lead, silver, seratonin, magnesium, etc. etc. etc.).
I have also had a themography to test for
abnormalities in my organs (clearly showed malfunctions in
kidney and liver), pupillography which verified poor oxygen
flow (tell me something I didn't know), EMF testing to see if
I had problems with electo-magnetic fields - turned out to be
negative) and a three stage urinalysis that we won't see
results for a couple of weeks.
I have also had a huge amount of blood
testing done that is still being evaluated. The Dr has said
from the beginning that he is not sure if he can help or not
(appreciate his honesty but wish i could report a better
analysis). He is still very cautious and doesn't even really
have a sense of when he might know if he can help or not. So
far is just gathering information and will continue to do so
for at least a couple of weeks if not longer.
He did have me start on a physical therapy
regimen yesterday which includes some light exercise, a sauna
and a massage. This is designed to help rid the body of toxins
that may have been building up over many years. SO... that's
the news from Lake Woebegone where the AA patients are above
average, the counts are not and the outlook is hopeful.
September 2,2001 Update
It is way too early to declare even a small
victory but judging strictly on how I feel, I think this
natural healing and detoxification approach has a chance.
I reached a pinnacle today in that I was sweating massively
which I have never done before and the veteran patients here
say that is a big step towards ridding your body of harmful
chemicals and toxins that have been building up in your
digestive system and immune system for many years. I
have also been testing for chemicals, molds, foods and
minerals and learning what compounds with which I may be
having problems. Once they establish what the testers call
"end points" they will develop antigens to those substances
which I will inject on a regular basis to help my system deal
with them. In the beginning this whole approach seemed a
bit far-fetched, but at least for now, its is making some
sense and I am hopeful. I have been repeatedly cautioned
that there are no "silver bullets" and this is potentially a
long arduous process but I have now met some people (granted
not AA types) who are finding success in dealing with diseases
that other MD's have given up on.
Update September 26,2001
I am beginning to think that this strategy may
work. I am still cautiously optimistic, but have now
gone 25 days since my last blood transfusion, am feeling
stronger than I have in over six months (exercise 20-30
minutes every day) and have none of nasty side effects
associated with cyclosporine and the other drugs I was on. I
am faithfully (well almost) following the rotational diet,
taking about 10 different vitamins and supplements every day,
exercising, sauna and massage daily.
I have also done about 50 different tests and
have discovered that I am allergic to milk products, beef,
chicken, brewer's yeast, grass, and about 20 other compounds.
I take antigen shots every day and am considering the purchase
of a sauna for home. It is definintely an all consuming
program that will require major life changes but if it is
going to save my life it is well worth the effort.
Dr. Rea and I discussed cause yesterday and
are pretty much in agreement that it is a case of "Multiple
Chemical Sensitivity." After being exposed to many new
houses, grass (big time reaction), pesticides, etc., my immune
system finally just shut down. Now that we are removing
many of the toxins via sauna and exercise, my body is
responding appropriately. Still a long ways to go, but I
am hopeful again and thinking more long term than next week!
September 28 Update
Had a chance to review my chart since coming
to EHCD and observed the following:
1. My WBC count at the time of admission to
hospital the first time was 3.5 and it now hovers around 1 -
2. I am convinced that my trip to Rochester and ATG
treatments actually caused the WBC count to drop!
2. My hemoglobin at that time was 7.3 and it
now hangs around 9 - 11 depending on how long since my last
blood transfusion. Hematocrits were 19.8 and platelets were 3.
(I guess I should have been dead?) My hematocrits are
now 24 - 33 depending and platelets struggle to stay around 25
- 35.
3. The testing here so far has revealed the
following which I am about to research more fully:
Low relative to general population and/or safe
levels:
Treonine, Methlhistidine,Cysteine, Ammonia,
Methionine, Amino Acids, Tryosine, Zinc, Magnesium
High relative to general population and/or
safe levels:
Mercury (probably from dental amalgums),
Glutamine, Glycine, Serine, Arginine, Urea
Also noted something about a glucose-insulin
interaction which I need to discuss with Dr. Rea.
I also will be meeting with Nutritionist (Ron)
on Monday to discuss what to do now that I know what foods are
problematic:
Milk, beef, corn, chicken, chocolate, peanuts,
shrimp, lobster, cheese, yeasts, eggs, potatoes, oranges, soy,
- Is there anything left you ask?
Foods that are "OK" for me so far:
Cabbage (Oh goodie), cane sugar (that's a
shock- but can't have it due to insulin level), honey, lamb
(Yeah!), onions (thank god), pork, strawberries, wheat,
ginger, carob, crab, haddock (Doug's here I come), and red
peppers.
I have a long list of other foods that I will
be testing for, but unfortunately most of them are vegetables
and I already eat enough of them! Dinner of Wednesday
was butternut squash and cabbage - How wonderful!
Checkpoint Appointment - How
we Doing here anyways?
No Blood Transfusion since September 2
-
WE FIXED THAT ONE - 3 IN A WEEK!
Mind is clearing Able to concentrate
Decent Energy but still fatigue and stairs - THAT'S AA
Blood Counts How Low to Go?
- Dangers? YOU HIT BOTTOM
Shortness of Breath & Lack of Energy Steps vs Treadmill
COUNTS LOW
Iron on the rise (Labscan) - Sauna Multi has iron) Concern?
Tryglycerides High Concern?
NO
BMP Results Small number of megakaryocytes WON'TGIVE UP
(But then zapped with ATG/Cyclo WBC down & Still Low
Neupogen a long term strategy or not?
DIDN'T ASK
Epogen/Procrit maybe work now?
SURE -GIVE IT A TRY
My fundamental issue? Not growing or immune system destroying?
Growth Stimulant for Platelets?
- NOPE
What stimulate platelets? Sesame/Seratonin????
DON'T KNOW
Want to calm my immune system Balance? Stimulate???
YES
CD34 marker Dr. Young Article What does it mean? -
DON'T KNOW
Link to Glycoprotein and Threonine?
Mine is Very Low Supplement?
Protein vs amino acids vs glycoprotein (CD34)
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