Approach to Alternative Treatment-Part1-My Personal Experiences
Approach to Alternative Treatment- Part 1
My Personal Experiences - layman perspectives
(The following are thoughts from my personal recollection and is meant to be a help to those who are interested in looking at alternative ways that can assist the recovery from aplastic anemia. These are based on experiences and will of course differ from person to person. They are of course layman perspectives )
When my son was diagnosed as having severe Aplastic Anemia and was warded for observation and treatment, there were no thoughts of needing any other intervention except what would be the normal course of treatment to be prescribed by the medical doctors in the hospital.
While awaiting the results of a bone marrow biopsy, the doctor's first line of treatment was to see whether steroids could help him boost his very low platelet counts. After a week, the results did not show any improvement in his platelet counts. I was also advised to take him out of the schooling system for two years to allow a full line of treatment including a bone marrow transplant and given a warning that his health would steadily deteriorate especially the blood counts, until we could arrest the aplastic anemia and get him into remission.
Meanwhile, every 4 days my son had to be given a platelet transfusion, and his blood counts monitored daily. There were fears of his platelets transfusions will lead to difficulties in grafting in a bone marrow transplant later on, and this was the first motivation for me to consider what else can be done to help or assist the treatment by the doctors. After a period of about 4 weeks, his red blood cells started to drop as well, and it was necessary to provide my son with a red blood cell transfusion. This again led to fears of too many red blood cell transfusions that will lead to a iron built up affecting the heart if this were to be prolonged.
My thinking was simplistic as a layman. The main symptom of my son's aplastic anemia was the drastic drop in platelets, so perhaps my first line of action to help him was to find out what could help improve the platelets counts.
In my mind whatever to be used alternatively was to supplement his current treatment by the doctors, and never to supplant or substitute for the current treatment.
An intensive search on the internet for past records of success in treating aplastic anemia worldwide, searches on possible alternative treatments and personal success stories was conducted.
And while this was being done, friends, both known and new friends I met including an online ministry of prayer - went into motion to pray for my son, so that spiritual help was there as well to prop up a desperate and downcast spirit.
In the end, I found out about simple things that could help boost the platelet counts. I discovered an ailment called ITP that was identified by a big drop in platelets, where many patients would need a spleen removal...and I discovered there were herbal methods of improving platelets counts in ITP patients.
I also discovered other places where success stories on treating aplastic anemia was available, particulary in China.
I shall continue with my story of alternative treatment from a simple layman perspective from time to time if friends on this forum would find it useful, . I hope my experiences here would provide some help and comfort to those who need them.
Approach to Alternative Treatment- Part 2- Some Hindrances
Approach to Alternative Treatment- Part 2- Some Hindrances
Today, I'll share my experiences on some hindrances I faced in trying to find out whether there were any alternative treatment to conventional medical treatment.
Firstly, as AA is a rare disease, there were very few records of cases of alternative treatment that I could find documented on the internet IN FULL. At best, I found alternative treatment to be discussed in some of the forums, but if I were to look out for details of what some who had walked the alternative treatment route had adopted, this was sadly missing.
But what struck me was that AA was a more frequently occurring disease in places like China, Vietnam and also I read of AA cases in Sabah (Borneo ), Malaysia when compared to America and other western nations.
From the internet searches, I read of a certain Dr Wu from China who was reported to have been able to help a leukaemia patient with herbs, and subsequently had treated AA patients as well. I emailed and corresponded with Dr Wu who indicated he was able to help in my son's case, but the herbs was very expensive.
Money aside, what worried me in any herbal treatment was the quality of the herbs from China. Subsequently I corresponded with a friend ( name withheld ) on this list who informed me that she had taken a few courses of the herbs from Dr Wu, but one consignment had fungus and had to be rejected by quarantine.
There was simply no guarantee that the herbs were free from pesticides or free from fungi spores etc.
There were several county hospitals in China typified as Medical centers specialising in hard to cure diseases that had some successes in treating AA using a herbal approach, and in some cases with a dual approach ( herbs and conventional ). Again, going to China was not a preferred strategy, nor was I ensured of the quality of the herbs...
This brought me to the question:
Is there someone from America who is a medical doctor trained in conventional medicine and who is also a master herbalist and who has also gotten reasonable experience treating AA and with good results?
Thus, I continued to scour the internet for information, and started to email a lot of friends on this list who offerred so much help and advice in the initial treatment and management of the disease.
I cannot over emphasize that there is a wealth of experience from members of this list who have tried various ways and techniques, whether conventional or alternative from which we can benefit by talking to them.
Andrea, a 17 year old listmate who had good response to the ATG was particulary helpful by telling me to get a theurapeutic air filter which I did. That air filter ensured the bed room was free from dust while my son's blood counts were down especially after the ATG.
The lack of a common knowledge center for alternative treatment for AA was a hindrance, and there was no way I can get satisfactory answers like: How effective is herbal treatment for AA? Any statistics? What about reccurrence? Is the recovery sustainable?
I shall continue the sharing in the next instalment, and hope this sharing will be useful and helpful to others seeking some answers.
An article on the Chinese Herbal Experience for AA - Pt 1
I am posting this to the forum as the article was seemingly "lost" within a very long report on ITP which appeared as an appendix in Aplastic Central.
Aplastic Anemia and Thrombocytopenia
....... ( truncated to keep within stipulated length of this forum )...
In China, aplastic anemia is frequently treated by herbal therapies. There seems to be little agreement on the best formulations to use, as the number of published formulas that differ markedly from one to the next is large, but most of the prescriptions rely heavily on tonic therapies, as might seem appropriate to this disease characterized by a blood deficiency. From the traditional Chinese perspective, the blood is stored in the liver, and there are a group of “liver blood” tonics that are thought to promote the accumulation of blood; the spleen is the source of blood nutrients, so qi tonics are usually deemed important to producing more blood; and the kidney system, which includes the bone marrow, is the ultimate source of blood and is stimulated by a combination of yang tonics to invigorate its activity and yin nourishing herbs to provide essential substance. It is common for the herbal prescriptions recommended to patients with aplastic anemia to be large, incorporating three or four herbs from each of the tonic categories: qi, blood, yin, and yang.
Anemias are often accompanied by fever, and the traditional description is that the blood deficiency, a type of yin weakness, gives rise to a deficiency heat (the heat is not adequately controlled). Thus, some formulas for treatment of aplastic anemia include heat clearing herbs, with a focus on those that clear heat from the blood. Some anemias are accompanied by reduced production of platelets, a condition that can lead to spontaneous bleeding; therefore, some cases of aplastic anemia are treated with herbs that inhibit bleeding.
It has been proposed that as a focus of treatment, for red blood cell deficiency focus on tonifying qi and blood; for platelet deficiency tonify yin; and for leukocyte deficiency tonify yang. Integrated Chinese and Western medicine is sometimes applied, using androgens, such as testosterone or stanazolol, or stem cell growth factors (i.e., erythropoeiten: EPO).
Gelatins from tortoise, turtle, antler, or donkey skin are prescribed in some formulas for the treatment of aplastic anemia. One example is an evaluation that involved 300 patients recruited during a 27-year period and treated with Chinese herb formulas (35). There were four formulas administered, but all contained donkey skin gelatin, rehmannia, and licorice; in the case of hyperactivity of yang and deficiency of yin as a traditional diagnosis, the patients were also treated with tortoise shell, turtle shell, stellaria, picrorrhiza, and lycium bark. While the cure rates were relatively low (except for patients with simple yang deficiency diagnosis), the improvement rates were said to be high; in the case of yin deficiency and yang hyperactivity, 77% of patients were reported to respond to this treatment method.
Another example is the use of Buxue Tang (Blood Nourishing Decoction) plus Buxue San (Blood Nourishing Powder) used in a study of treatment for aplastic anemia (25). The decoction included turtle shell and tortoise shell, the blood cooling and nourishing group of raw rehmannia, moutan, peony; the qi tonics astragalus, atractylodes, dioscorea, and codonopsis; the blood nourishing ho-shou-wu and lycium; and the astringents schizandra, cirsium, and rubia. The powder contained donkey skin gelatin and deer antler, plus ginseng, eucommia, sanqi, and gallus. The decoction and powder were taken twice daily. Of 25 patients so treated, it was reported that 17 were essentially cured, 5 were in remission, and only 3 did not respond after a course of therapy lasting one month. These formulas, rich in gelatins from four animals, mainly focus on the traditional categories of tonifying qi and blood.
A version of this protocol, using Bushen Shengxue Yihao (Tonify Kidney, Generate Blood No. 1), has the main ingredients tortoise gelatin, donkey hide gelatin, rehmannia, and astragalus. This was tested in laboratory animals (32) and shown to increase plasma testosterone levels, an effect that has also been claimed for deer antler and its gelatin. Testosterone is sometimes given along with Chinese herbs to treat aplastic anemia; in one study (42), patients with chronic aplastic anemia were given large doses of testosterone by injection and a decoction of Chinese herbs according to constitution. For patients classified as having yin deficiency, the formula incorporated tortoise shell, tortoise shell gelatin, antler gelatin, lycium, eclipta, ligustrum, and ho-shou-wu. Among 13 of 22 patients who had good response to the combined therapy, 9 had no relapse for at least a year.
The Chinese Experience on Herbal Treatment for AA- Pt 2
...(continued from Part 1 )....
Thrombocytopenia, or platelet deficiency (usually due to bone marrow disorder), is treated similarly. For example, one of the versions of Bushen Shengxue Tang, containing tortoise shell gelatin, deer antler gelatin, rehmannia, astragalus, ho-shou-wu, codonopsis, tang-kuei, epimedium, salvia, rubia, ligustrum, and licorice, was given to 54 patients with thrombocytopenia (33). It was reported that all but 2 of the patients responded with increase in platelet counts and halt bleeding due to platelet deficiency.
Another example of treatment strategy is relayed in The Treatment of Difficult and Recalcitrant Diseases with Chinese Herbs (26), formulas listed for treating this disorder include Ciyhin Cangxue Fang, which is comprised of tortoise shell, oyster shell, and herbs to clear heat (phellodendron, lycium bark, gardenia), stop bleeding (bleeding is an effect of having low platelets; biota tops, sanguisorba, scute), and tonify deficiency (eucommia, lycium).
According to Pei Shen (40), when treating bone marrow deficiencies, one should tonify the yang to raise leukocytes, nourish the yin to raise platelets, and tonify qi and nourish blood to raise red blood cells. For raising platelets, he recommended tortoise shell gelatin, deer antler gelatin, and donkey skin gelatin, along with polygonatum, jujube, yu-chu, and raw rehmannia, as valuable ingredients.
MDS Help needed
my name is Bonnie age 27 i am living in hong kong, i have recently been diagnosed for MDS-RA. i would like to know how is your son doing? and if there are any information you can give on alternative medicine or anyone who knows how alternative medicines can help me improve my conditions.
thank you very much
Reply to Bonnie-something of interest
Sorry for relying so late, but this is the first time I am relogging on to the forum ever since it was changed from the list server to an online forum. I am unable to log on to the forum to check for postings daily unlike the list serv with the daily emails coming in.
Anyway, my son is doing very very well. He is now working full time with an accounting firm and also juggling with his part time studies with a double degree at the same time. He is in his best of health and life is great.
MDS-RA is a different blood disorder when compared to Aplastic Anemia. But calling upon my past online research, I have encountered one alternative technique used by some with MDS and pre-leukiaemia conditions where the patients reported commendable results.
That technique is QiGong.
Since you are in Hong Kong, it is even easier for you if you choose to try it out, though, of course, the technique can be used anywhere else.
I suggest you take a look at the testimonial of Tow Gow on the website where he talks about where his chromosome damage was reduced dramatically from 80% to 10% by way of performing the qigong exercises.
Click here for the Testimonial of Tow Gow
There are several forms of qigong for good health and for healing, and I suppose this link above will provide you with the beginning information that might be useful to you. There is a FREE CD you may wish to order from them to check things out further for free, there's a link on the site for you to request the cd for free.
Seeking alternative AA treatment
Good day, thanks for some information. But can you discuss the treatment given to your son? Thank you very much.
Almost 15 years ago....
It has been a long time ago since I visited this forum and I thought a good thing to do at the start of the year 2017 is to say hello to this community.
It is almost 15 years ago ( since 2002 ) that my son had undergone AA treatment and supplemented with the herbs and shark liver oil that I have posted in this forum before. He has been in the best of health ever since- no meds at all.
So there is always hope and treatment that can help!
It is very good to hear from you after so many years and to know that your son is doing well. You may recall that we first met on the AA-MDS-TALK listserv in 2002, when my life was normalizing after my bone marrow transplant. Now I am 18 years post-transplant and, like Stan, doing very well with no meds other than the ones that pertain to middle age.
Wondering if you would share what brand, strength, and dose of shark liver oil your son takes?
reply to JoMac53....
Sorry for making a response now... I happened to drop by today and saw your post...and a year has gone past!
It has been 16 years since my son's recovery. He's in perfect health. Throughout this period, he has only used shark liver oil from the deep seas from New Zealand and Australia. Currently the brand is Australian manufactured from"Wealthy Health" .It is basically a maintenance dose now- so he takes a single capsule of 1000 mg per day. I have made posts on the use of shark liver oil. dosage etc in this forum elsewhere.
To all friends in this forum, like to say hello and wishing all of you the best of health and be positive - there's always help and hope and recovery.
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