Fighting Bone Marrow Disorders with Alternative, Holistic Medicine

This page is dedicated to the memory of my father, CDR Paul L. Dennis, USN (Ret.), who battled sideroblastic anemia for nearly seven years. He was a decorated war hero, loving father, devoted husband, and above all else a gentleman. I miss him dearly.

Update: January 27, 2009

I have had this page, in one form or another, on the web since 2003.  In the past it has been focused on using non-prescription nutritional supplements, especially N-acetylcysteine, in the following ways:

• Regulating Tumor Necrosis Factor-Alpha (TNF-alpha) in order to correct improper immune system responses to developing bone marrow cells
• Removing excess metals from the body
• Maximizing the oxygen-carrying capacity of the blood
• Minimizing oxidative damage

In theory, this strategy should work very well.  According to the research literature, the main causes of these anemias and disorders are faulty TNF-alpha regulation and heme synthesis errors caused by either heavy metals or (perhaps) radiation exposure.  N-acetylcysteine (NAC) is a TNF-alpha regulator, and both vitamin C and NAC are chelators of metals and strong antioxidants.  Feedback I have received for prior versions of this page says that for most people blood counts improve for a while, but then they start declining again.

This has made me think again about what the real root cause could be.  Considering the fact that medical research keeps discovering that more and more cancers and other ailments are caused by viruses, I now have a strong sense that there is a viral, bacterial, or fungal component to myelodysplasia, aplastic anemia etc.  And I believe this is the case even in conditions that have been deemed hereditary (e.g. X-linked sideroblastic anemia )

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. YOU are responsible for your own health! 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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How I Became Interested in Sideroblastic Anemia and Other Bone Marrow Diseases

My interest in sideroblastic and aplastic anemia (and related diseases) began when my father was diagnosed with sideroblastic anemia in the mid 1990s. He had been very healthy for many years until he noticed, at age 69, that he was starting to get very short of breath after only moderate exertion. He went to the Naval Hospital in Portsmouth, VA for an evaluation, thinking the problem was heart-related. He learned that 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, bone marrow disorders are happening with increasing frequency. Some researchers I have spoken to think exposure to benzene-related compounds is THE culprit.  Others researchers disagree.  But there is no doubt that benzene is terrible for the immune system.

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 and cell counts. Even newer drugs such as Gleevec have low efficacy.  For younger patients, these diseases are 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 review the current medical research in the hope of helping my father.  The concepts that follow were born from this effort.

A Five-Pronged Attack

After many many hours of reviewing medical research, talking to some medical researchers, and following my own logic and intution I now believe five things have to be accomplished to treat bone marrow disorders like sideroblastic anemia and aplastic anemia:

1. Regulate Tumor Necrosis Factor-Alpha (TNF-alpha) in order to correct any improper immune system responses to developing bone marrow cells
2. Remove excess metals from the body to help prevent heme synthesis errors
3. Maximize the oxygen-carrying capacity of the blood
4. Minimize oxidative damage without hindering the body's natural systems for killing pathogens
5. Deal with an undetermined root cause -  viral, bacterial, or fungal

Regulating TNF-alpha

In our bodies, TNF-alpha is a type of signalling agent called a cytokine.  There are many different kinds. Depending on what their roles are, cytokines either make something start or else make it stop. There are chemical pathways for 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.  Additional research is also looking at another cytokine, related to TNF-alpha, called TRAIL (tumor necrosis factor alpha related apoptosis-inducing ligand).

According to volumes of medical research, N-acetylcysteine (NAC) is the supplement of choice for regulating TNF-alpha. Cysteine (and N-acetylcysteine) also play an important role in the proper functioning of TRAIL.

Various retinols (Vitamin A) also have the ability to regulate cell differentiation via interactions with TNF-alpha..

Removing Excess Metals

Reversible Sideroblastic anemia can be caused excessive zinc consumption, and there is a tenuous balance of good metals (especially zinc, iron, and copper) necessary for normal erythropoesis and proper immune functioning.  For people who are transfusion-dependent, iron overload is a major concern due to the fact that iron does not get recycled into new red blood cells and instead deposits into tissues, hastening oxidative damage.  Lead (a heavy metal) exposure has been implicated as well, and any lead in the system needs to be removed via chelation.  Other heavy metals like cadmium also need to be removed as they interfere with many bodily processes.

IP-6 (aka Inositol Hexaphosphate, Phytate, Phytic Acid), vitamin C, and EDTA are effective chelators of metals.

Maximize the Oxygen-Carrying Capacity of the Blood

When low oxygen levels are a concern it only makes sense to do whatever possible to maximize oxygenation of cells.  Low oxygen levels damage cells, and lack of oxygen is what causes the fatigue and lassitude that are the hallmark of anemias.

Vitamin E helps reduce red blood cells fragility by affecting the cell membrane, and helps in the efficient transportation of oxygen.  Oils that are high in omega-3 fatty acids are important in maintaining a proper balance of fatty acids, an important factor in oxygen transport.

Minimize Oxidative Damage

As mentioned previously, low oxygen levels in cells triggers metabolic processes that damage cells, primarily via oxidation.  Excess iron also creates conditions where excess free radicals are generated and damage occurs.

NAC prevents damage from low-oxygen states.  Vitamin C is a redox agent that when needed works as an antioxidant.  Vitamin E protects cells from damage caused by excess iron.  Iodine is a strong antioxidant whose importance is finally being discovered by some researchers and physicians. 

Deal with the potential root cause whether it be viral, bacterial, or fungal

As I mentioned earlier, current medical research has not yet proven that there is a viral or other component to these anemias.  But, consider the following fairly recent and not-so-recent discoveries:

• Human T-lymphotropic virus (HTLV) causes T-cell leukemia and T-cell lymphoma
• Feline leukemia virus (FeLV) causes feline leukemia
• A virus causes Equine Infectious Anemia
• Merkel cell polyomavirus (MCV) causes Merkel cell carcinoma
• Human Papilloma virus (HPV) has been linked to skin cancers and cervical cancer

So, you might be wondering, why not just make the seemingly little leap and say a virus more than likely causes aplastic anemia, sideroblastic anemia and other anemias?  The main reason is that often times these agents work together to create havoc. For example, in some situations a virus might create a weakened condition that opens the door for an opportunistic bacterial infection.  Or vice versa. And, although it is a very controversial subject, for many many years there have been researchers who claim that some viruses, bacteria, and fungi are pleomorphic i.e. can change from one state to another. 

Because we are talking about a moving target, perhaps, there is really no choice but to at least explore modalities on the "fringe".  And if you are here, and fighting one of the myriad bone marrow disorders, you probably don't care what the establishment thinks. What you want is something that helps.

What alternative options are there to fight all three (viruses, bacteria, fungi)?

Herbs etc.

The following herbs and supplements have been shown to have some efficacy against pathogens:

• Vitamin C
• Vitamin D
• Neem
• Black Walnut Hull
• Olive Leaf
• Elderberry
• Quinine (extract of cinchona tree bark)
• Iodine (kelp extract)
• BHT - BHT is butylated hydroxytolulene, an FDA-approved food additive.  In some research studies it has prevented cancers; in others it has caused them. BHT is taken by some people to prevent outbreaks of the Herpes virus, and is advocated by some to fight the HIV virus.  It works, in theory, by weakening the fatty sheath of lipid-coated viruses so that the immune system can recognize the virus as an invader and attack.

Most interestingly, there is reference in Medline to a case of sideroblastic anemia being cured by chloroquinine.

On the Fringe

Electromedicine:  A variety of devices exist for which there are claims of killing pathogens via either disrupting their reproductive processes, destroying via resonance, or inactivating via pulsed DC current.  There are also some who think that application of weak DC current creates H2O2 in tissues (see below section on H2O2). As you can imagine, this is considered controversial stuff, perhaps even "tinfoil hat" stuff, with plenty of debunkers out there to say it simply cannot work.  With that being said, there is much anecdotal evidence on the Internet for these devices having a positive effect.  I personally have had conversations with a person who cured his son of cancer after mainstream medicine had said there was no hope.

THE place to learn more about this type of thing is http://www.electroherbalism.com , a site maintained by an electrical engineer with an interest in holistic health. You will get the science and theory without New Age-y stuff.

Intravenous and Ingested Weak Solutions of H₂O₂:  As I am sure you are well-aware, hydrogen peroxide is a strong oxidizing agent which can kill you if ingested but also kills germs on contact.  However, there are people out there, under an alternative health practitioners watchful eye, ingesting or receiving intravenously minute quantities of Food Grade H₂O₂ in the hopes of killing pathogens in the blood.  I am in communication with one person fighting sideroblastic anemia that has seen an improvement in blood parameters since starting this type of treatment under the supervison of a naturopathic physician.  Many caveats apply here.

Suggested Holistic and Alternative Health Protocol

Herbs and Supplements

• Olive Leaf Extract - the dose will depend on how much Oleuropein is in whatever product you buy.  Look for an extract that offers 20% Oleuropein content.  At that %, 500 mg, twice per day is reasonable.  Note:  if you get a powder the taste is very bitter.

• Black Walnut Extract - 500 mg, every other day, or twice per week.  Take every other week off.  This is not an herb to take for extended periods of time.

• Atomidine (Iodine Trichloride) - Atomidine is a liquid form of potable iodine which is added to water.  One drop per day in a glass of water or fruit juice.  It is an antioxidant as well as an antifungal and antibacterial, and might have antiviral activity as well. For much more information on the benefits of iodine supplementation you might want to look at Dr. Miller's paper at http://weeksmd.com/?p=369

• Vitamin D - 2000 mg per day.  Very recent research has revealed that Vitamin D is a powerful antibiotic via increasing production of antimicrobial peptides.  Humans have come to be perpetually Vitamin D deficient due to staying indoors under artificial light as well as using sunscreens which prevent creation of Vitamin D by the skin.  Read the article Epidemic Influenza and Vitamin D for a compelling reason to boost your intake of Vitamin D.

• N-Acetylcysteine (NAC) - 750 mg, four times per day. This dose might seem high, but is well within the tolerable range of NAC consumption cited in studies of patients with HIV and other diseases. 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. Note: NAC taken daily over a long period of time can cause both zinc and copper loss. The literature on several websites I have perused recommend adding a daily zinc and a copper supplement to be certain these minerals do not drop to inappropriate levels.

  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. A new non-prescription buffered NAC product called Pharmanac looks like a good option for those that can't tolerate unbuffered NAC.

• IP-6 (Inositol Hexaphosphate, Phytate, Phytic Acid) - 500 mg , twice per day. IP-6 is a substance that is an effective iron chelator and which should help prevent iron overload for people who are transfusion-dependent. It is also being studied for its possible cancer-fighting properties, again based on a theory that cancers require high iron levels in order to grow. See:
  http://www.ip-6.net/secondpage.html and
  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8772254&dopt=Abstract

• Vitamin C - 500 mg, twice per day (even more may be better). 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 a very special substance, and there is a reason nearly all mammals make it themselves, in quantity, in the liver.  It is a redox agent:  a pro-oxidant when dealing with diseased tissues and pathogens, and an antioxidant which can help to protect cells from low oxygen conditions. See:
  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12540038&dopt=Abstract
  
  It also protects platelets from damage due to oxidation. See:
  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11001390&dopt=Abstract%20
  
  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.  Or visit the Vitamin C foundation Web site.

• Vitamin E - 400 mg, twice per day. Build up to this amount over a period of a month or so. Vitamin E helps reduce red blood cells fragility by affecting the cell membrane, helps in the efficient transportation of oxygen, and reduces cell damage due to high iron levels. See: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11029967&dopt=Abstract .
  
  Note: I have been informed that some doctors have been advising patients with low platelet counts to not take Vitamin E as it increases clotting time. Although I think Vitamin E is a very valuable and important antioxidant, please use caution if your platelet counts are very low.

• High potency B vitamin - twice 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 Desferal�) 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

• A "friendly flora" supplement containing Acidophilus and Bifidus - this will be necessary to counter any effects the Olive Leaf and vitamin C could potentially have on good bacteria in the gut.

• Silymarin (Milk Thistle Extract) - 1 dose per day.  Silymarin has a long history of being used to protect and restore the liver.

Electromedicine (optional, but highly recommended)

• a "Clark-type" zapper - use twice per day as per instructions that come with the unit.  

Conclusion and Contact Information

Please feel free to email me at groovetube66@yahoo.com with any thoughts you may have.  I will try to answer your questions but please keep in mind I am not a medical professional. Although I cannot and have no business telling you what to do, it is my strong belief that you should COMBINE this protocol with any current "mainstream" treatments you may be given such as epoetin. My hope is that the information on this page can help you - myelodysplastic or aplastic anemia patient, caregiver, doctor, researcher, or friend - in battling this terrible disease.

If you decide to try this protocol please contact me with what you have done, what the test results were, and your objective data and subjective impressions of any changes in your health.

If this information has proven valuable to you, consider making a donation to help defray hosting costs for this site.

copyright Sean Dennis 2003-2009
last update, January 29, 2009

Appendix: Information on NAC from Pubmed

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

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12008086&dopt=Abstract
Higher TNF-alpha levels in MDS

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12601528&dopt=Abstract
NAC causes a significant decrease in plasma TNF-alpha in the elderly

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12678402&dopt=Abstract
NAC reduces reduces TNF-alpha, reduces reactive oxygen species levels, and increases glutathione peroxidase activity

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

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11978899&dopt=Abstract
NAC inhibits TNF-alpha

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10654448&dopt=Abstract
NAC reduced TNF-alpha levels in MDS cells. 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.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11896744&dopt=Abstract
Low plasma cysteine levels linked to muscle wasting and immune system dysfunction

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11820776&dopt=Abstract
NAC protects red blood cells from damage

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11691805&dopt=Abstract
NAC protects bone marrow from myelosuppression caused by toxic compounds

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11840265&dopt=Abstract 

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10947965&dopt=Abstract