Thursday, February 19, 2015
It does not appear that anyone is actually following any of my aplastic meanderings any more but will post anyways and maybe try to revive a few things. My wife of 44 years passed away in November of 2014 so my life is very different. Not sure if I want to go on or not. May use posting as a therapy and may not. Stay tuned.
Sunday, March 17, 2013
The new picture reflects our family and extended family together for a reunion in 2012. Building a new version of aplasticcentral.com. Anybody still following my story, I am now over 12 years from being given six months to live. It is a joy to still be around and I try to cherish each and every day as an unexpected miracle.
Monday, January 10, 2011
Ten years ago yesterday, January 9, 2011 I was diagnosed with Aplastic Anemia. It ruled my life for the next 5-7 years. I have lost many friend to this dreadful illness and similar ones and am grateful to still be here. Thanks to the support of wife, family, friends and strangers I am one of the lucky survivors. Best wishes to everyone who reads this and follow the website.
Visit our website to see what Sue and I are up to now vs what I looked like when this whole thing started.
Wednesday, December 22, 2010
What follows is a guide to healing yourself using an approach that is an alternative to the drug based protocols being recommended by conventional medicine. I am not a medical professional but my wife and I have read countless books on nutrition and alternative healing strategies. The first thing we recommend is a radical change in diet and lifestyle.
My full regimen is documented at http://aplasticcentral.com/Holistic_Medicine/Holistic.htm.
Contrary to what we have come to expect in our society, there are no quick and easy answers. Since adopting my alternative/holistic regimen, I have returned to 90% of my formal self. In the interest of full disclosure, as of November, 2005 after over three years of feeling great I am currently in a bit of a relapse but am still able to carry on a fairly normal lifestyle.
I rely on conventional medicine only for life saving therapies like blood and platelet transfusions, monitoring of blood counts, infection control, etc.
I highly recommend contacting an environmental doctor in your area http://www.aaem.com Tel (316) 684-5500, seeking a phone consult with either Dr. Rea http://ehcd.com Phone: 214.368.4132 or Dr. Sherry Rogers 315-488-2856 or get the books by Dr. Rogers at http://prestigepublishing.com
I do not believe in any quick fixes when it comes to healing the body. Unfortunately, we live in a "sound byte" society and are constantly bombarded with the latest "purple pill" designed to cure everything from eczema to "acid reflux disease” – in English that means you are eating too much of the wrong foods and drinking soda.
In the case of AA/MDS, the conventional approach is another "miracle drug" called cyclosporine and is often coupled with "ATG" (a serum extracted from a horse or a rabbit!). This drug based approach to healing almost killed me. See photo on the left below.
My approach to healing is certainly no less bizarre than injecting someone with horse serum or overdosing them with arsenic (cytoxin) but unfortunately most people are reluctant to recognize the value of an alternative approach and are unwilling to take the time and effort it requires. I am living proof (see photo on the right taken in November of 2005 with 2 of 3 grandchildren) that an alternative/holistic strategy works. It takes a lot of discipline and is not easy, but it works!
If after reading the website at http://aplasticcentral.com you would like a one stop source of how all this worked for me, you can preview my book "Aplastic Anemia and Autoimmune Diseases, for FREE at http://aplasticcentral.com/AA_Book_Preview.htm
Provide a Healthy Environment to Allow You 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. My story is at http://aplasticcentral.com/AA_Members/bruce.htm. 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 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 Health mate (Search on Austin Health mate at http://google.com and you'll find lots of places to by 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 decides 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. Every one 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!
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.
Diagnosed with SAA 1/2001 2X ATG (Failed)
Now 90% healthy using Alternative/Holistic Methods
Webmaster of http://aplasticcentral.com
NOT A MEDICAL PROFESSIONAL - PLEASE CONSULT YOUR CARETAKERS
Me enduring conventional protocol:
Me today - no blood transfusions in over five years:
Sunday, June 27, 2010
I am absolutely convinced that my AA was and is related to toxins and environmental exposures. I still cannot tolerate ant spray or weed spray or any of those things. Now that my immune system is functioning properly it sends me alarms whenever I am in proximity of such things. I used to and most people ignore these signals (headache, stuffy nose, etc.) and mask them with drugs. I receive nothing for the endorsements on this page. Just trying to help out.
1) We could not have afforded to buy the sauna on our own so my in-laws did a fund raiser and we used the proceeds for sauna. http://www.heavenlyheatsaunas.com/
2) After the book was written:
a. Had a one on one dialogue with Dr. Sherry Rogers – Not sure if she takes calls anymore but here is a number you can try 315-488-2856
b. Sue has all of her books and has studied them until they have all fallen apart
d. She had me do a cardio ion panel (forget that it is heart related, as it is the chemical study you are looking for) that clearly showed my personal deficiencies and she then recommended what I needed as supplements. I no longer take them all but think they were very helpful in getting me stable.
e. Link for the cardio panel http://www.metametrix.com/content/DirectoryOfServices/0290CardioIONProfile-BloodUrine
3) If she is not available, try finding an environmental doctor here http://www.aaem.com/
4) Sue mentioned to you that we have discovered pineapple is good for platelets – that came from one of the people who frequent www.aplasticcentral.com forum
5) I also avoid orange juice and drink lots of grape and pomegranate juice instead (There is a blend of those that I drink daily now)
6) I drank lots of green tea early on but less of it these days – need to get back on that
7) I continue my daily or every other day regimen of sauna, enema and supplements that I am convinced has kept me alive for this long.
8) I try to exercise and get at least 30 minutes of fresh air every day. I can tell when I slack off on these two and try to get back on track.
9) Still drink and use only fresh spring water and Sue fixed lots of healthy, balanced meals with lots of fruit, fresh vegetables, greens, etc.
10) Still available to talk with anyone 336.499.9826
Wednesday, March 31, 2010
We are starting a new business www.abn2.com and counts are on the rise!
Tuesday, September 15, 2009
My hemoglobin is at 10. Highest in about five years. Website is back to respectability with a working forum. I am working again, also working in the garden for 1 hour stretches and able to take 45-60 minute walks so AA is not currently the center of my life. Hope it stays in the background!
Friday, June 12, 2009
Thursday, June 11, 2009
Not that long ago, I was on the cutting edge of technology and the information revolution but fell off the track somewhere along the way. This post will be my first as a reinvented "webpreneur" - Yes, Virgina, it's a real word : http://www.thewebpreneur.com/ and http://en.wiktionary.org/wiki/webpreneur.
I see how others apparantly use BLOG's, forums, websites, newsletters, Search Engine Optimization, Google Adwords, social networking, click throughs, links and countless other methods to generate revenue. I know I can learn to use these tools and get back in the game.
The aplastic site, the toast forum and this BLOG will be launching points for a new strategy designed to generate recurring revenue. I will be looking for ways to leverage the fact that Aplasticcentral.com still appears on the first page of most search engines. Granted this is a relatively small niche of people but it is a start and I will be seeking ways to expand this network while providing increased value to the loyal group of people who have helped keep the toast forum alive all these years.
Should I stay with the tools I used to create aplasticcentral and simply add new strategies or do I should I use one of the new integrated tools like http://sitesell.com/ recommended by http://www.stevepavlina.com/.
Gwen Ifill, the moderator of the recent presidential debate between Barack Obama and John McCain recently said, "I don't wake up in the morning and say, 'Oh darn, I'm black again!'". Its time for me to stop saying "Oh darn, I still have aplastic anemia" or "Oh darn, I lost my nest egg" or "Oh darn I'm too old and nobody will hire me" and get on with my life! No more excuses! Make it happen!
Here's what I hope will be a step in the right direction: http://seeker4life.blogspot.com/
and I am using AdSense without knowing much about it. In theory, I'll see some really small bits of revenue flowing sometime in the next few months.
Wednesday, May 6, 2009
Never give up - Although I have been doing the daily sauna and treatment complete with tons of vitamins and supplements, my diet has been horrible! Sue and I watched the "Gerson Miracle" last night and I am inspired to get back on a diet that works.
I will be juicing, bouncing, exercising, and eating lots of fruits and vegetables. Weight today is 218 pounds. Counts are 2.3 WBC, 9.0 Hgb, 27.2 Hct and 17 Plt.
Saturday, April 18, 2009
Tuesday, April 14, 2009
My counts are slipping again. Here are the last two:
March 6 2009
April 3 2009
Sunday, January 18, 2009
I celebrated my 8th anniversary since diagnosis on January 9th, 2009 and continue to thank God for the opportunity to reshape my life. I still experience the fatigue associated with AA but am otherwise able to function normally and try to ignore my illness as much as I can.
Sue and I spend a great deal of our time these days with our now six grandchildren. I am thankful that I was given the "extra" eight years that I did not expect to have with Sue, our daughters and their families.
Cleared up my sinusitus!
I recently had a 6 week battle with cold, sinusitus, etc. that I always seem to get this time of the year. Near the end, I discovered the following that really helped:
1) Nightly routine that includes neti pot flush, breathe right strips and vaporizer.
2) Accupressure at the bone spur between thumb and forefinger
3) Sinusitis can be a "structural issue" so I now stand up straight and tilt my head to the right when I feel clogged up.
4) When it is most severe, I "soak my head" using the steaming method described below.
I had realized for a long time that I "tilted" my head to one side and that like most people, my left leg is shorter than my right leg and as a result I have curvature of the spine. Believe it or not ( I was amazed), when I stood straight and tilted my head to the right, my sinus starting draining almost immediatley! When combined with accupressue described above, I can clear my sinuses without any sprays or medication whatsoever.
"Acupressure's Potent Points" by Michael Reed Gach.
It's "in the webbing between the thumb and index finger, at the highest spot of the muscle when you bring the thumb and index finger close together." (p.203) ...
Sometimes a person has chronic sinus problems because of structural problems...
Spinal misalignment can trigger head and sinus congestion. There is an adjustment to the neck that chiropractors and DOs can give which can open up nasal passages. This adjustment can work on sinus congestion due to allergies or infections. I used to know a DO at a local hospital who was very much in demand by staff as well as patients during allergy season. The adjustments he gave opened up their heads instantly without the side effects like drowsiness or agitation of conventional medications. I WAS ABLE TO MAKE THE ADJUSTMENT ON MY OWN BY WALKING WITH MY HEAD TITLED TO ONE SIDE AND CONCENTRATING ON STANDING STRAIGHTER.
Quick Fix 1: Get Steamy
Dry air can cause or irritate sinus problems, but inhaling moisture can help. Simply breathing the steam from a hot shower will ease congestion.
You can also enhance the steam you breathe with sinus-clearing essential oils. Once or twice a day, add five drops of eucalyptus (Eucalyptus globulus), lavender (Lavandula angustifolia), or sandalwood (Santalum album) essential oils (or a combination) to a large bowl of steaming-hot water, suggests Sylvia Goldfarb, Ph.D., of Wyncote, Pa., author of Allergy Relief (Avery Penguin Putnam, 2000). Drape a towel over your head and the bowl, and breathe deeply for 10 minutes. You'll feel relief within that time.
To treat acute sinusitis, substitute tea tree oil (Melaleuca alternifolia) and repeat the sinus steam three to four times daily. Tea tree oil's powerful antibacterial properties fight the bacteria that cause many infections, says Karen Barnes, N.D., a naturopath in Burlington, Ontario, and author of Naturopathic First Aid (Quarry Press, 2001). Your symptoms should clear up within a few days.
Quick Fix 2: Press to Relieve Pain
Massaging certain acupressure points on your body can quickly relieve facial pain, says Susan Padberg, M.D., a medical acupuncturist in Madison, Wis.
Use your right thumb and index finger to grasp the skin between your left thumb and index finger. Press gently to find where the muscles make a V shape on the top of your hand. Massage this small indentation with firm but gentle pressure for 10 to 15 seconds; repeat on your right hand. Do this as needed. Pregnant women should not use this technique; it may stimulate uterine contractions.
You can also massage your face directly. Firmly and gently press your index fingers above the center of each eyebrow or between them. Massage for 10 to 15 seconds and repeat as needed.
Wednesday, December 17, 2008
From Stem Cell To Immune System
A new study demonstrates for the first time that embryonic stem cells can be used to create functional immune system blood cells, a finding which is an important step in the utilisation of embryonic stem cells as an alternative source of cells for bone marrow transplantation. This hopeful news for patients with severe blood and immune disorders, who need these transplants for treatment, was prepublished on-line in Blood, the official journal of the American Society of Hematology.
Embryonic stem cells (ESCs) are being intensely investigated as a renewable source of primitive cells theoretically able to regenerate all tissues and organs. The use of ESC-derived blood-forming cells may have an important advantage over traditional transplants that use bone marrow, umbilical cord blood, and peripheral blood from donors. The antigens on the surface of donated cells must be compatible (determined by a method called HLA matching) with those of the patient to prevent rejection. The use of embryonic stem cells, which have low levels of these antigens and may therefore be less likely to provoke a defencive reaction by the patient’s body, may allow patients who can’t find suitable HLA-matched donors to receive transplants.
Previous studies have shown that mouse ESCs can be coaxed to form blood-forming hematopoietic cells by introducing a protein called HOXB4, known for its unique ability to greatly enhance cell proliferation, into them. These cells could then be transplanted into mice whose own marrow had been destroyed by radiation, rescuing their marrow function and beginning to produce necessary blood cells. However, previous studies have not investigated whether ESC-derived bone marrow in these mice could regenerate normal immune function – in particular, if they could allow the mice to respond to viruses or vaccines. Because foetuses have no need for a functional immune system as they are protected from the environment while in the womb, it was unclear if ESC-derived marrow would recreate an immune system at all or just very slowly.
In this study, a team of scientists from Iowa, Taiwan, and Germany used HOXB4-containing ESCs to engraft the bone marrow and rescue mice that genetically lacked any immune system and had been irradiated to destroy their bone marrow. Only cells containing HOXB4 were able to engraft, rescue the mice, and produce blood cells long term. These engrafted cells were shown to be derived from the transplanted ESC-derived cells.
To determine if these transplants were able to rebuild the defunct immune system, the scientists injected the mice with LCMV, a common rodent virus, and watched for T-cell activity, a sign that the body was defending itself against the infection. Although the number of T cells generated by the new haematopoietic cells was low, they were able to respond effectively to the virus. In addition, the transplanted haematopoietic cells were also able to produce B cells and other defencive cells called antigen-presenting cells, which have a role in signalling T cells to action. They also tested the ability of the mice to respond to vaccination and demonstrated the induction of specific immune cells. Although the level of immune response was not what is seen in normal adult mice after exposure to the virus or vaccine, it was measurable and effective.
The study was also encouraging in that none of the 70 transplanted mice followed for more than 200 days developed any tumours – another concern when using ESCs for tissue regeneration.
“These results show, for the first time, that functional white blood cells, the key players in the body’s immune system, can be successfully derived from embryonic stem cells expressing HOXB4,” said lead study author Nicholas Zavazava, MD, PhD, Professor of Internal Medicine and Director of Transplant Research at the University of Iowa Hospitals and Clinics in Iowa City and Staff Physician at the Iowa City VA Medical Center. “Therefore, we’re hopeful that these exciting findings are the first step toward new, improved therapies for patients.”
Saturday, November 8, 2008
A definite upward trend:
Bruce WBC HGB HCT PLT
Normal 3.6 13 165
12/07 2 8.3 24.3 28
06/08 2.1 8.6 26
07/08 2.3 9.1 32
11/08 2.4 9.9 28.4 30
I stopped paying attention to counts several years ago figuring it was a lost cause but even my feeble brain can see this is on a positive trend. If it was a stock, I'd be buying HGB on the uptrend.
Monday, September 1, 2008
Monday, July 28, 2008
The program I refer to in my previous post is pretty much the same protocol I have been on since 2002 and is documented here:
I occasionally tried other protocols to see if I can get my counts up but invariably come back to this strategy as the one that works for me.
It is the exact same one I documented in my book and send to anyone who asks. I take most of the supplements listed at http://aplasticcentral.com/Charts_and_Stuff/supplements.xls
and try to eat a much more healthy diet than I did prior to my diagnosis. Lots of fresh vegetables and fruits and limit the fast food consumption although I still have the occaisional McD french fry attack.
My daily treatment includes sauna, enema and the detox stuff (multi, vit c, niacin, recancostat glutathione and alpha lipoic). I take the rest of the supplements at least once or twice a week.
I have not had a transfusion in a little over four months but have my threshold set at 8.0 hemoglobin which is much lower than most people can tolerate.
Friday, July 11, 2008
Many of you would not be impressed, but this is decent progress for me:
Hemoglogin 9.1 - up from 8.6 2-3 weeks ago
Platelets 32,000 - up from 26,000
WBC 2.3 - from 2.1
Mayhaps something is working? I have gotten back into a pretty good routine with better food and steady use of vitamins, sauna etc. including good rest - an AA type needs to recharge the body more regularly than normal types.
So long to Chinese, accupuncture and Shaklee stuff (protein shakes and some other magic potients) - I have known for a long time there are no magic potients! - I think I know what works - I just need to get back on my program
Monday, June 23, 2008
Just finished a much needed refresh of the website at http://aplasticcentral.com. Cleaned out a bunch of junk that had accumulated, fixed broken links and updated the entry pages. If anyone actually reads this, please leave me a comment. I really wonder if anyone uses the website anymore. The forum also seems to have much less activity than it did in the past.
Tuesday, May 20, 2008
I just keep hanging around. Not feeling great but not feeling all that bad. I anticipate that I will be back on the transfusion band wagon again. Had one in March and am already feeling drained at times - have a doctor appointment in July so will see how it goes.
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