Myelodysplastic and Aplastic Anemia
Experimental Adjunct Treatment Protocol Page
Disclaimer: The author of this page is not a medical
professional and makes no drug claims for the following information.
Although the protocol described contains non-toxic, non-prescription
ingredients, and is based on relevant medical research, it also is unproven
by established medical science. The author has no vested or monetary
interest in anything contained on this page, but believes the information
may be able to help those with various anemias and other diseases of the
marrow. It is in this spirit that this is presented to you.
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Introduction
My interest in
myelodyspastic and
aplastic anemias (and related diseases) began when my father was
diagnosed with
sideroblastic anemia in the mid 1990s. He had been exceptionally healthy
for many years until he noticed, at age 69, he was starting to get very
short of breath after only moderate exertion. He thought he must have
developed heart disease and finally went to the Naval Hospital for an
evaluation. The doctors said his heart was fine, but he was very anemic.
Tests determined he had sideroblastic anemia. At first the family breathed a
sigh of relief, but as we learned more about the disease we felt less
assured. We learned it is sometimes referred to as "smoldering leukemia",
and like leukemia is a disease of the bone marrow. It is considered an
"orphan disease" with comparatively little research currently being
undertaken. However it, along with other myelodysplastic and aplastic
anemias, is a disease whose frequency is on the rise. Many researchers think
exposure to
benzene-related compounds is the culprit, although others disagree.
Even more distressing, we learned that for a person over the
age of 55 or so current medical science offers no treatment options with any
significant likelihood of working. Care consists of regular transfusions of
blood with careful monitoring of blood chemistry, especially iron levels.
For younger patients, myelodysplasia is treated aggressively in a similar
manner to attacking leukemia i.e. killing off the bone marrow with
chemotherapy, followed by a bone marrow transplant.
After learning all of this I became determined to learn more
about this disease in the hope of helping my father.
My Research of the Literature and Scholarly Publications
After many many hours of research I believe that there are
some key nutrients and supplements needed to help fight these anemias and
help ameliorate the damage caused by persistent and profound anemia. Most of
the information to follow will focus on a substance called
N-Acetylcysteine, or NAC for short. This information is written in a
simple writing style so as to not bombard the reader with medical jargon,
and because I am not a doctor nor scientist and do not even begin to claim a
thorough knowledge of the biochemistry involved.
Current research is showing that myelodysplasia and similar
diseases is caused by improper regulation of cellular growth. A substance
called TNF-alpha appears to be main culprit. TNF stands for "tumor necrosis
factor". It does just what the name says. The body uses TNF-alpha to stop
improper cell growth and destroy tumor cells. But in cases of myelodysplasia,
the TNF-alpha for some reason kills off the good, developing bone marrow
cells before they can mature to the point where they then generate red blood
cells and platelets.
This is where N-Acetylcysteine (NAC) comes into the picture.
Way down deep at the cellular level, the body produces and uses substances
called cytokines. These cytokines are basically signalling agents. There are
many different kinds. Depending on what their roles are, cytokines either
make something start or else make it stop. There are cytokines in the body
that tell TNF-alpha to either start killing off cells or stop killing them
off. But in myelodysplasia and related anemias the cytokines do not work
correctly. Instead they turn on the TNF-alpha at the wrong times. See:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9883804&dopt=Abstract
Anti-cytokine therapy suggested for myelodysplasic syndromes
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8847900&dopt=Abstract
Cytokines and TNF-alpha implicated in myelodysplastic syndromes
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10752992&dopt=Abstract
Elevated TNF-alpha levels noted in patients with myelodysplastic syndromes.
Differentiation inhibited
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10052711&dopt=Abstract
Yet again anti-cytokine therapy suggested
Researchers have found that NAC keeps those cytokines from
incorrectly signalling TNF-alpha to kill off the good but still-developing
bone marrow cells. On top of that, NAC also ensures that TNF-alpha kills
tumor cells when it is needs to. For an analogy, think of those cytokines as
an old fashioned light switch with two push buttons, the TNF-alpha as a
light bulb, and the NAC as someone pushing the buttons on the light switch.
When you want the room dark so you can sleep, you want to be sure the light
is turned off. When you want light so you can read a book before snoozing,
you want the switch to be pushed to the on position. Inside the body, NAC
helps turn on or off these cytokines in an appropriate manner. In the case
of sideroblastic anemia, one important role NAC plays is that of an
anti-cytokine, thus keeping normal bone marrow cells from being killed off
by TNF-alpha. It also helps in the proper signalling of TNF-alpha in
destroying defective bone marrow cells that cannot form viable red blood
cells or hemoglobin. Typically in these anemias normal marrow cells are
eventually crowded out by defective marrow cells to the point where the body
no longer produces blood cells capable of carrying oxygen. See:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11062741&dopt=Abstract
NAC prevents inappropriate cell destruction and inhibits damage from low
oxygen states
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9242544&dopt=Abstract
NAC turns off TNF-alpha when it is incorrectly killing off normal cells
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10438532&dopt=Abstract
NAC reduces inappropriate signalling of cytokines
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11301180&dopt=Abstract
NAC regulates cytokines
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11156586&dopt=Abstract
Again, NAC regulates cytokines
From the above noted research you can see that NAC is being
tested as a therapeutic agent for many ailments, including cancer, leukemia,
and heart disease. However, this in vitro study puts it all together:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10654448&dopt=Abstract
NAC reduced TNF-alpha levels. It greatly improved bone marrow cells chance
of surviving. When the normal marrow cells are allowed to mature they then
produce normal red blood cells and platelets.
In summary, I believe strongly that supplementing with N-acetylcysteine
may help myelodysplastic and aplastic anemia patients improve their blood
profile by assisting in the preservation and development of normal bone
marrow cells, and possibly in keeping abnormal cells from reaching maturity.
Suggested Experimental Adjunct Treatment Protocol
- N-Acetylcysteine (NAC) - 750 mg, twice per day. An interesting side
note is that NAC can increase the loss of zinc through urination, and
reversable sideroblastic anemia can be caused by very excessive zinc
intake. If NAC causes stomach upset, there are buffered versions
available. A buffered liquid version is available from
Westlab
pharmacy, however this version requires a doctor's prescription due to
the fact it is compounded.
- Vitamin C - 500 mg, twice per day. If this amount causes
gastrointestinal distress, start out with a lower dose and build up
gradually over the period of a few days. Ascorbic acid is an antioxidant
which should help to protect cells from low oxygen conditions. Ignore the
occasional negative article you hear about vitamin C in the mainstream
press. Instead, go to the
National Institute of Health's Pubmed database and check out the many
many abstracts showing ascorbic acid and positive results.
- Vitamin E - 600 mg, twice per day. Vitamin E helps reduce red blood
cells fragility by affecting the cell membrance, and also helps in the
efficient transportation of oxygen.
- High potency B vitamin - 1 per day. B12, B6, and Folic Acid are all
involved in erythropoesis. B12 is especially important.
- Mixed carotenoids - 1 per day. Various retinoic acid (vitamin A
derivatives) have been tested for their ability to regulate cell
differentiation.
- A multimineral tablet without iron - 1
per day. There is a tenuous balance between iron, zinc, and copper in the
body. If you are receiving transfusions you already are having iron
overload problems (and should be on a chelator such as DesferalŽ) due to
the fact that your body is not utilizing iron properly to make red blood
cells and instead is depositing it into your tissues.
- Flaxseed oil or other oil high in Omega-3 fatty acids - Use liberally
as a food in salad dressings, etc. Having the proper balance of fatty
acids in the blood is important to maintaining proper immune functioning
and blood oxygen carrying capacity. See:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9572573&dopt=Abstract
If you decide to try the suggested experimental adjunct treatment
protocol, please stay on it for at least one month (preferably two months)
in order to give the protocol time to start working. You have nothing to
lose.
Conclusion and Contact Information
Before I conclude I must note to you what happened when I
convinced my father to try some of these ideas, including the NAC. In early
summer of 2001 I purchased for my father NAC tablets, mixed carotenoids, and
a B12 sublingual spray. He had for months been on daily injections of
EpogenŽ along with his weekly blood transfusions and
DesferalŽ (iron chelator). His blood counts stayed fairly stable but
with no improvements. After 4 weeks of taking the NAC, B12, and mixed
carotenoids his blood work improved, with a noticeable improved in
hemoglobin. However, he stopped taking the NAC as it upset his stomach
severely. About a month later his blood levels returned to their previous
lower state, despite the continued injections of EpogenŽ. I attempted to get
his physicians to provide for him a prescription for buffered NAC by sending
them the information presented on this page and the information for Westlab
pharmacy. However they refused to follow up on this information and he,
discouraged by the doctors and a skeptic himself despite the experience he
had, stopped pursuing the matter.
At this point my father's health is in decline, but he is
still alive and fighting as best he can. Even though I was unable to help
him due to circumstances beyond my control, I am hoping the information on
this page can help you - myelodysplastic or aplastic anemia patient,
caregiver, doctor, researcher, or friend - in battling this terrible
disease.
Please feel free to
contact me at sdennis@knology.net with any questions you may have. I
will try to answer your questions but please keep in mind I am not a medical
professional. If you decide to try this protocol please contact me with what
you have done, what the test results were, and your subjective impressions
of any changes in your health. I hope to update this page frequently with
more information and, I hope, good news.
February 11, 2003
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