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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.  

  1. 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! 
  2. 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
  3. 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.
  4. 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.
  5. 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.  
  6. 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.
  7. 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.
  8. 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).
  9. 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)
  10. 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!
  11. 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. 
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. Keep up with the forum and become an active participant.  Surround yourself with positive people and bombard yourself with positive thoughts.  
  18. Seek God's Blessing and Good Luck in Your Endeavor!

Alternative Healing Links Courtesy of Buddy Jack & My Searching

http://nccam.nih.gov/
http://www.altmedicine.com/
http://www.drweil.com/
http://earthmed.com/
http://www.oxystore.com/book_bo5.asp
http://www.ralphmoss.com/
http://www.itppeople.com/success.htm
www.naturalhealthconsult.com
http://www.thedoctorwithin.com/index_fr.html
http://uniquehealingsolutions.com/
http://groups.yahoo.com/group/Alternative_Medicine_Forum/
http://www.aaem.com/
http://www.wholehealthmd.com/
http://www.drday.com/
http://www.ehcd.com/
http://www.mcsrr.org/
http://occ-env-med.mc.duke.edu/oem/index2.htm
http://www.ofesite.com/health/nutrition/nutrchrt.htm
http://www.geocities.com/marlakins/index.html
http://www.soilandhealth.org/index.html
http://www.alternative-medicine-message-boards.info
 

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! 

Dr. Rea - October 8

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)