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Author Topic: Natural "Cures" for Thalassemia  (Read 51496 times)
Andy Battaglia
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« on: December 15, 2006, 11:56:02 PM »

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!

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« Reply #1 on: December 16, 2006, 01:20:42 AM »

Hi,

Well, Homeopathy really has cured many cancerous tumors and even improved the health of patients with serious heart disease. I can confirm this as it's my own observation at these clinics, but then again, we also know that the human body can cure various diseases, even suppress cancerous tumors all by itself by using Placebo medicine! So who knows what happened in these cases.

I've been a test subject for Homeopathy for about 15-16 years, but nothing worked for me!

Take care, Peace!
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« Reply #2 on: December 16, 2006, 01:56:56 AM »

Hi sajid ,



  , two left feet ,
we all make mistake this why we are the pecfect dysfunctional web family.
you are okay little brother and I know Christine and  Manal loves you dearly.
and I do too.
Its so nice we can agree to disagree.
Love Kathy

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« Reply #3 on: January 08, 2007, 02:29:42 AM »

Here's a new one!

Last night I was attending a wedding in the family. (Boy! is it a season of weddings or what? It's the third one in the last few months with one still left next month!!)

Anyway, I was chatting with my relatives when one guy came up to us and asked one of my relatives if there's something wrong with me? We looked at each other with amazement that how he figured that out as I don't have any bone deformation etc. (Could have been the skin color?!?). Anyhow! he told us about a herb and said to make a pickle out of it and then use it. I said to myself ("Yeah, yeah, been there; done that") but it really amazed me how he walked up to tell us about it. He must be some Herb-specialist.

I'll first have to find the name of that herb in English and search for it's contents and properties on the Web before I pop it into my pickle jar!

Something tells me Herb>pickle>sour>Vitamin C=increased Iron absorption from herb (Maybe, I'm being too much skeptic!)

Take care, Peace!
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« Reply #4 on: January 08, 2007, 05:35:06 PM »

HI  sajid,
I would like to hear more about the natural therapy when you get the name of the herbs
thank-you for the information,
Kathy
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« Reply #5 on: January 09, 2007, 02:07:01 AM »

Dreams are good while they last! 

In my search for the name of that herb in English for the properties of that herb; I overlooked one of the most valuable source of knowledge: My Mom!

It is called "GAL-GAL" in URDU and I couldn't find the English translation anywhere on the web. When I told mom about that guy I met last last; she said, "Sure, Galgal is mainly used for pickles" She even told me that we had the plant in our back yard! Then she told me everything about it and after that I was doing like this

Galgal is a Citrus fruit; something between a lemon and a grape-fruit. It is lemony yellow in colour but big as a grape-fruit. It has rough bumpy skin unlike the smoother skin of a grape-fruit which is almost as smooth as an orange's skin. Galgal is quite pulpy but it does not yeild much juice with respect to a lemon if it was the same size, that's why it is mostly used to make pickles.

In short it is just an over-grown lemon with harder dryer pulp. I don't see it containing anything special that can be helpful. I guess, that guy just thought I needed some Vitamin C to brighten my complexion or something

The verdict(Thanks to my mom): MYTH BUSTED (I always loved that Myth Busters show on Discovery)

Take care, Peace!
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« Reply #6 on: January 10, 2007, 06:27:43 PM »

It is my understanding that these herbal cure claims make no sense untill backed by substantial scientific evidence. There are scammers everywhere and lets be aware of them.

I remember some so called doctor claiming to have a cure when we were on MSN, you remember him Andy? that was so hilarious when he was posting and we finally blocked him.

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« Reply #7 on: January 10, 2007, 06:53:18 PM »

Ah yes. You're referring to our old friend "Dr" Ghulam.    He is actually a member here but he's not allowed to post. 

This is why I mentioned to Sajid in a recent post why it was so refreshing to see  a natural supplement that had some research behind it, when we were talking about inositol hexaphosphate. Wheatgrass is one of the few other therapies that has some research to back up its claims.

Well, we've put up this challenge and we're still waiting for even one person to stand up and say "I was cured" by such and such. Why do I get the feeling we're going to be waiting awhile? 
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« Reply #8 on: January 15, 2007, 12:52:53 AM »

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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« Reply #9 on: January 15, 2007, 01:13:37 AM »

I have run into the Chinese cure site many times. I have always been happy to see that they only claim to cure thal minor and not major, as it makes their claims more believable. I do not doubt that certain herbs can improve the health of minors and maybe even have some impact on quality of life issues of all thals. This treatment does require a specific regimen. I would be very interested in learning more about it.
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« Reply #10 on: January 16, 2007, 12:20:55 PM »

Hi Andy.... it is interesting that we hear of these natural cures and healers in India and Pakistan only.. ..
But a condition as complicated and severe as Thalassaemia... well I doubt there are any alternative medicine at the moment..
Like Manal asked about Dr. P. Bannerjee of Kolkata.. well if he or anyone really had a cure.. dont you think he would be world famous by now?

Wheatgrass does have some positive research behind its use.. but again I dont know how much effect it has on Thal major.. my daughter is on wheat grass for a long time now.. other than some improvement in health ( which we dont know if it is due to wheatgrass).. the transfusions rate remains the same.

So I guess we should not mislead ourselves with all kind of news.. but just do what we are supposed to do,  based on years of  research and what the modern medical world believes in..

And if a Miracle doctor does come up with somethimg some day .. we will all get its benefit...

Shikha



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« Reply #11 on: June 21, 2007, 05:40:47 AM »

WHEAT GRASS  HAS A VERY VERY GOOD EFFECT. I HAD MET A THAL. MAJOR PATIENT AS HE DAILY TAKES THIS SUGGEST BY ONE OF AYURVEDIC. AND SINCE AFTER THIS IN ABOUT 2 MONTHS HE SEE THAT THE TIME OF BLOOD TRANFUSION HAD  NOW INCREASED ABOUT 7 DAYS AND HE ALSO DONT FEEL DOWN FOR A MUCH LONGER TIME.
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« Reply #12 on: June 21, 2007, 09:08:20 AM »

Mr. Kabir_love,

The use of wheat grass is effective in Thal. Intermedia as it stimulates the production of HbF that Intermedias can better produce than us Majors. I've been using it for quite a while and I found no significant difference as I am Thal. Major.

This proves that Intermedias are being misdiagnosed as Major at your hospitals. Know that it is very hard to diagnose Intermedia and tests like Electrophoresis don't detect it and they get "Certified Diagnosis" as Thal. Major. in most of the hospitals in the subcontinent; like this child that you are talking about.

Something tells me your son is also Intermedia and giving him wheat grass is going to help him a lot. Please try to give him some and hopefully you will see positive results.

Take care, Peace!
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« Reply #13 on: June 21, 2007, 07:15:33 PM »

This brings us to a very interesting debate. Where would you draw the line i.e. Intermedia and Major.

Doctors have some main baseline factors through which they decide the onset of thalassemia major.

-if a child is presented before the age of one.
-the HB level is recorded less than 7 two times in three consecutive months (Can happen in Intermedia).
-DNA confirms beta zero (Merely a calculated guess; just like now scientists are contesting the science of DNA in court cases).

Since the severity chart of thalassemia is so large, could these factors really means major, I think there is much confusion around it and medical science is still struggling.

What do you think.

Thanks.
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Andy Battaglia
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« Reply #14 on: June 22, 2007, 02:25:49 AM »

Intermedia has always been a somewhat arbitrary classification, with its definition changing, depending on who you ask. Probably the most commonly accepted definition was that if the patient doesn't transfuse regularly as a child, and has two beta gene mutations, the classification is intermedia. Because of the many different mutations and multiple possible combinations of these genes, any classification will cover a broad range of conditions.

Unfortunately, we are not yet quite to the point where we can say intermedia or major by the combination of mutations present. Right now we mainly have these few classifications of thal to work with, but in the near future, as more people have DNA tests and their genes are cataloged, we will see computer programs that will predict the type and severity of the thalassemia and also be used to design specific treatments for patients from birth.  How low the Hb will drop will be predicted by the combination of genes involved, including any other modifying genes. The computer program to catalog these mutations and predict accordingly already exists. What is needed now is a major effort to catalog all the different gene variations involved in the group of blood disorders all lumped together under the name, thalassemia.
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