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Author Topic: Natural "Cures" for Thalassemia  (Read 54024 times)
Mukta
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« Reply #45 on: October 15, 2015, 08:15:45 AM »

Lokhi maa ,

As our son is very small Dr Raman has only advised as to start with Wheat Grass powder for his daily dosage. We have started him on this.He has called us after 4 months & we are not sure if he would start medicines so soon.

hardik : Thanks for all the info. This is very useful information to have and share.
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Andy Battaglia
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« Reply #46 on: October 15, 2015, 09:17:18 AM »

Dr Ramanan is a pioneer in a method no one else has tried and until Dr Ramanan publishes results, I don't expect to see many doctors try his methods.

There is no point in being skeptical about the results Dr Ramanan is having with many patients. If other doctors don't try to duplicate his work, that is on them, not on Dr R. The results are true. We do need to continue to request Dr Ramanan to publish results. I would love to see him invited to the next TIF conference and Dr R has expressed interest in presenting, but will the international community invite a doctor that many see as a rebel?
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Andy

All we are saying is give thals a chance.
Nomad
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In Darkest Day in Brightest Night...


« Reply #47 on: October 15, 2015, 09:07:07 PM »

Andy, hate to say it but as far as I know T.I.F. I don't think so. They have their own "standards ". For example, although they mentioned the oral combined therapy in their guideline they absolutely seem not to be happy hearing about me using it... As for vitamins or antioxidants... don't ask don't tell. The only comment I got was to wach out not to run out of oxidants.
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DrRajpal
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« Reply #48 on: November 20, 2015, 05:27:05 AM »

We've often heard claims that there are healers and clinics that make the claim that they can cure thalassemia. These "cures" are usually found in the form of herbal mixtures, homeopathic remedies or through the use of some supplements. We most commonly hear these claims from countries such as Pakistan and India, where medical care is often lacking and people are desperate for anything that might help battle thal. Unfortunately, this leads to a proliferation of frauds, fakes and charlatans. There are many true herbalists and homeopaths, but there are also many fakes and it is left to the patients to determine who knows their craft and who are frauds. When we choose medical care we normally hope to have some information about the doctors, etc. or the clinics or hospitals where they will be treated. When we see these claims online there is often no easy way to check on the reliability of those offering help. When looking for a doctor we might ask a friend or relative to refer you to someone but how do we find out about these "healers" who advertise their businesses on the internet? This seems especially difficult because these healers never seem to be able to present patients who have been cured of anything. They often use privacy issues as an excuse, but I have yet to meet any thal who wouldn't be shouting it from the rooftops if he or she had been cured. Wouldn't we be hearing about this in the news and even in the online forums?

Over the past few years I have heard from several different individuals and groups that claimed they could cure thal. I have yet to have any of them present a single cured patient. I don't doubt that some of these places offer something that may improve the quality of life and maybe even raise fetal hemoglobin levels some, but I also feel that if any of them were curing thals we would have heard about it. In fact, these people would be rolling in money if they had such a cure in their hands.

I would like to ask anyone who has any experience, positive or negative with healers who claim to be able to help or even cure thalassemia, to post and tell us their experiences. Has anyone found anything that improves the quality of their life  or raised their hemoglobin levels or have been able to reduce or totally eliminate transfusions. Does anyone know anything about these clinics we've heard about in posts here recently or any other clinics where they have made claims about treating thal?

There do appear to be some food products and supplements that can raise Hb levels somewhat, wheatgrass being the most known example, and there may be many others we have yet to identify. I'd like to encourage people to post any experience they have had related to this, whether using some supplement or natural medicine or being treated at any of these natural clinics. Anything you can tell us may be of help to many others. This group has so much potential as long as people are willing to share their own experiences. Let's do that!


[/quoteThank sir for recommendation to Mr umar I hv suggested him few medicines And told even can send on much less price than online
Secondly am happy to share that my first case I have mansioned many times He cam to 110ml of BTW from 300ml And duration is increased upto 40days from 20-25
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mommycarrie
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« Reply #49 on: November 23, 2015, 01:55:34 AM »

Hello, I am new here so I am not an expert as compared to most of you in this forum.

My family and I have recently transferred to China. My husband and I are both teachers and we were fortunate to land a job with benefits including free housing, free tuition, and medical assistance.

My son is 4yo. He has Beta Thalassemia with HgE. Back home, in the Philippines, his hematologist finds him "generally healthy" in spite of having blood levels ranging from 80-100. We make sure he never gets sick. We bring him to the doctor even with a mild cold to prevent him from having severe infection.

3 weeks ago, my son was confined due to pneumonia. He was misdiagnosed (by 4 doctors) which made his mild cold turn to something severe. If we did not insist for a chest xray, we won't find out that he already has pneumonia. As expected, his hemoglobin levels decreased (56) and he was required to have transfusions (for the 1st time). He was only give half a unit of blood because the doctors just wanted to increase his blood levels a bit but not necessarily up to 110. Because of the incident, we were forced to look for a good hematologist. Good thing one of our parents in school knows a good friend who is the head hematologist in a Children's hospital.

I found out today that my son's thal is different. Alpha was also found in his blood. This results to lessening of the severity of his thalassemia. His doctor recommended a Chinese Medicine (sodium ferrulate- extracted from 2 kinds of ginseng) to help maintain blood levels and prevent bursting of RBCs in addition to his other medicine which is folic acid. We were advised to monitor our son's hemoglobin every 3 mos and for now he doesn't need further blood transfusions.

It's my 1st time to hear about sodium ferrulate. I will let you know how it goes. I'm planning to mix it with wheat grass. I know that herbal meds take too long to effect so I am starting it now for my son. We have a lot of those supplements back home. Hopefully, as my son grows old, he will never need transfusions.
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Canadian_Family
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« Reply #50 on: November 23, 2015, 09:43:20 AM »

If it is completely natural then there is no harm in trying it. However, I would seek advice from the doctor if mixing it with wheatgrass is okay.

Interesting to see how sodium ferrulate works. Do update us accordingly.

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Andy Battaglia
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« Reply #51 on: November 23, 2015, 09:44:37 AM »

Hi Carrie,

Yes, presence of an alpha deletion does moderate beta thalassemia and can lead to an intermediate status rather than major. I will be very interested to hear how the medicine works. It is proven safe and effective for o0ther conditions and is a powerful antioxidant, which would have value in thalassemia.

http://www.ncbi.nlm.nih.gov/pubmed/16007232

Quote
Cardiovasc Drug Rev. 2005 Summer;23(2):161-72.
Pharmacological actions of sodium ferulate in cardiovascular system.
Wang BH1, Ou-Yang JP.
Author information
Abstract
Sodium ferulate (SF) or 3-methoxy-4-hydroxy-cinamate sodium is an active principle from Angelica sinensis, Cimicifuga heracleifolia, Lignsticum chuangxiong, and other plants. It has been used in traditional Chinese medicine and is approved by State Drugs Administration of China as a drug for treatment of cardiovascular and cerebrovascular diseases. SF has antithrombotic, platelet aggregation inhibitory and antioxidant activities in animals and humans. For several decades SF has been widely used in China to treat cardiovascular and cerebrovascular diseases and to prevent thrombosis. Exciting clinical results have been obtained with SF in coronary heart disease, atherosclerosis, pulmonary heart disease and thrombosis. Its safety and efficacy have been demonstrated in clinical practice. This article briefly reviews basic pharmacology, pharmacokinetics, toxicology and clinical pharmacology of SF. The in vitro and in vivo data support the view that SF is a useful drug for the treatment of cardiovascular diseases.
PMID: 16007232 [PubMed - indexed for MEDLINE]
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Andy

All we are saying is give thals a chance.
mommycarrie
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« Reply #52 on: November 25, 2015, 07:49:30 AM »

The doctor explained that sodium ferulate strengthens the cell wall of RBCs to prevent hemolysis. Sounds like it acts similarly to folic acid.

I learned today that it is hard to find sodium ferulate here. We have to order online to get a bulk. It is VERY cheap but hard to find. The only studies I found about it is its use as anti-thrombotic.

I found one study about its effects on protecting heart injury against iron overload http://en.cnki.com.cn/Article_en/CJFDTOTAL-JXYB201209006.htm
However, this was done on mice.

I've seen forums about the Yisui Shengxue Granule as an HbF inducer. I asked my officemate to translate this to me in pinyin so I can ask our hematologist about it and to check out the pharmacies.

I also found this table of Natural Cures for Beta Thalassemia http://www.hindawi.com/journals/isrn/2014/123257/tab2/
I plan to translate each in pinyin and ask hematologist for the safety of these products for children.
 
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Andy Battaglia
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« Reply #53 on: November 28, 2015, 01:14:34 PM »

Carrie,

We have heard about Yisui Shengxue Granules for years but have yet to talk to anyone who has tried it, so if you are able to find it, I would like to know if it does have positive effects.
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Andy

All we are saying is give thals a chance.
mommycarrie
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« Reply #54 on: December 26, 2015, 08:41:03 AM »

Update on my son's sodium ferulate treatment:

We went back home in the Philippines for the Christmas vacation. My son's appointment with his hematologist here in the Philippines is scheduled on the 20th so we got his blood tests on the 19th, this was his 27th day on sodium ferulate. His last CBC was done Nov 23 and his hemoglobin is at 83. He is now at 100. His hematologist in China told us that sodium ferulate can prolong the lifespan of his RBCs enough to give his bone marrow time to make new ones but of course sodium ferulate is not a cure.

I'm happy with the outcome. The only prob is there is only ONE distributor/manufacturer in China. Hopefully, the company will NEVER stop manufacturing the drug.

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jsbhavsar
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« Reply #55 on: October 12, 2017, 08:47:11 AM »

While in the United States for 5 years, I was based in Minneapolis where there were lot of stores from China, Vietnam.
One such store used to give me a mixture of following Chinese herbs to treat my beta thalassemia minor:

益髓生血颗粒(YSSXG)的成分(ingredient):

Yi Sui Sheng Xue Chong Ji

(Boost the Marrow, Generate Blood Granules)

山茱萸Shan Zhu Yu: 9 grams

制何首
I am new here and have Thal Minor.  I have symptoms of mild anemia and it is bothersome.  As much as it is bothersome it is disturbing that I am functioning at a lower level then my potential.  After some serious research I came across only one website that showed a study that caught my attention.  Please comment on this.  I am particularly interested in people who may have tried it.

For those of you that don't feel like reading it...it says that several studies were done to show that herbal remdies actually "cured" thal minor.  The most specific study was a very small group but showed 16 out of 17 patients were cured.  It worked by changing the functioning of the kidneys which in turn altered the bone marrow and creation of red blood cells.   

http://www.itmonline.org/arts/thalassemia.htm

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jsbhavsar
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« Reply #56 on: October 12, 2017, 08:53:29 AM »

The list of chinese ingredients are:


益髓生血颗粒(YSSXG)的成分(ingredient):

Yi Sui Sheng Xue Chong Ji

(Boost the Marrow, Generate Blood Granules)

山茱萸Shan Zhu Yu: 9 grams

制何首
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Andy Battaglia
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« Reply #57 on: October 14, 2017, 01:23:10 PM »

Did you find that these herbal remedies had value? I have heard of this many times. but have not learned whether or not it is truly useful.
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Andy

All we are saying is give thals a chance.
jsbhavsar
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« Reply #58 on: October 16, 2017, 03:10:50 AM »

I took these herbal remedies (year 2009-2012 range) by boiling the ingredients in a large pot of water and drinking the extract. It did help me many weeks.

Now, there were two persons in the Vietnami store in Minneapolis who would pack the YSSXG ingredients for me.

When the lady's daughter would pack the ingredients for me (this happened only one or two times), those packets brought the best results in my body even when I was not taking daily Folic acid then, only quarterly B12 was taken and 100mch thyroxine was taken.

When the lady herself would pack the ingredients for me, those packets did not bring the best results in my body even.

As I am good in giving the feedback to anyone, I gave the same feedback to the lady. But she rubbished the claim saying both she and her daughter put the same ingredients in the package and nothing is different.

After I moved from Minneapolis, I lost touch. I am yet to see any Chinese herbal store in Mumbai, India and it is a distant reality to have one here.
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eng.Aaron
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« Reply #59 on: November 05, 2018, 11:59:26 AM »

dear Andy, i have always wondered if i was really a thal major!! i was diagnosed after age of 3
i get BT every 3 week with Pre T above 9 mostly

that doesn't really matter now, but i have tried WheatGrass powder in a water and drank it maybe 3 times only
and i did felt better

but it very difficult for me to drink the powder in a water mix

so, my Question is, is there any wheatgrass capsules of tablets that can just swallow ? and it is effective?

if yes, can you recommend me a brand i can buy it from Amazon or Iherb.com ??

thanks in advance 
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