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[Himanshu Kumar]

Posting a video for some home remedies. The video doesn't claim a cure but expounds the use of wheat grass which can reduce transfusion. The video is in Hindi though.

https://www.youtube.com/watch?t=99&v=VpkRZnnc6V0

[Lokkhi maa]

Dear Andy,

Please share your experience  and feelings about wheatgrass tablet.Is it really reduce transfusion?

[jay]

okkhi maa

http://www.ncbi.nlm.nih.gov/pubmed/15297687
http://www.ncbi.nlm.nih.gov/pubmed/11989836

the first study says that it is very useful and the second study says that wheat grass it is not a placebo.

so it means it is definitely useful, but here is a catch the clinical trials use different different protocols and alternative medicines try to avoid the protocols which are very stringent.
The results of the study are so promising that it looks like fake.

Most of the ancient knowledge is lost and we can see many fake interpreters of Ayurveda but i strongly believe in lifestyle which includes yoga and Ayurveda.

I tried it on my baby once and it did not yield any better results but as he is on best observation and goes through all the tests every 15 days i will try wheat grass after couple of months.

[Andy Battaglia]

My personal experience of observation is that wheatgrass does raise Hb in many people, even non-thals, as it did for my wife while she underwent chemotherapy.  I used it after great blood loss during surgery and it definitely helped. In addition, wheatgrass is a mild iron chelator and has a positive effect on the immune system. Because it has several areas of value for thals, I do recommend it to thals in some form. Most will not find fresh wheatgrass juice palatable, so tabs, powder or extract are the more commonly used forms.

[Lokkhi maa]

Thanks Andy.Could you please provide me the best online service for order place and best brand of wheatgrass tablet to purchase.I got various offer of many brands from many Indian online site  to purchase.So really confused.Please help....

[Andy Battaglia]

Lokkhi,

I don't know which companies you have access to. It's difficult for me to advise people in other countries where they can buy from.

[DrRajpal]

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.

Quality of life is big concern for thals ,
as all of us know - it would be best if gene therapy gets success , but what till then?
we can work for-
reducing iron overload,
reducing amount of blood getting transfuse,
reducing Endocrine related disturbances,
reducing osteoporosis,
retardation of ageing,
reducing secondary infections,
protecting liver , spleen, heart , kidney , lungs, ears, vision, joints etc.
increasing time between two consecutive blood transfusions.

we all can gets these by simply Yoga , Ayurveda , and Naturopathy.

[DrRajpal]

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!

Quality of life is big concern for thals ,
as all of us know - it would be best if gene therapy gets success , but what till then?
we can work for-
reducing iron overload,
reducing amount of blood getting transfuse,
reducing Endocrine related disturbances,
reducing osteoporosis,
retardation of ageing,
reducing secondary infections,
protecting liver , spleen, heart , kidney , lungs, ears, vision, joints etc.
increasing time between two consecutive blood transfusions.

we all can gets these by simply Yoga , Ayurveda , and Naturopathy.

[DrRajpal]

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.
hey dear what does he told , which herb he told you to make pickle?

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!

[Andy Battaglia]

I fully agree that the lives of thals can be made better by natural methods. I am not saying they won't need blood and chelation, but the overall health is greatly affected by diet, nutrition (including herbs) and exercise (including yoga). My own life is better the more I learn about natural methods. For example, in recent months, I have totally replaced ibuprofen (after 19 years of daily use) with capsules containing turmeric and black pepper.

[Nomad]

Andy I thought this combination is only used for gastrointestinal problems? What do you use it for?

[Andy Battaglia]

Turmeric and black pepper work well for pain caused by inflammation. One of my employees had his cardiologist prescribe turmeric for pain, as he suffers from syncope and falls often, resulting in constant pain. He has also found that it is helping him quite a bit.

[Andy Battaglia]

Here's a link to an article on turmeric and pain. Adding black pepper or fats makes it far more bioavailable.

[Nomad]

  thanks Andy. But where is the link?

[hardik]

HII to ALL

After reading all posts.... I m little bit confused that why anyone had not refferred about "hydoxyurea" and "Thallidomide" even a single time in their post..
I dont know about other countries but here in India....these two are emerging at a very fast pace...towards grabbing the throne of thalassemia and the patients who are treated or are treating their children with these two....promising alot about reduce in no of transfusions (extended upto 150 days and so)

Though I m an Indian but i know this fact very well that in other countries medical care is far more superior.....and thus i m not able to digest these promises.........and if these are rarely true promises......then anyone who had knowledge about this .....share with us......so that all of us will get the advantage of being transfusion free and thus of iron overload.

Can anyone throw some light on it???