Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: Andy Battaglia on December 16, 2006, 05:56:02 AM
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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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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 :biggrin for Homeopathy for about 15-16 years, but nothing worked for me!
Take care, Peace!
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Hi sajid ,
:console :console :console :console, two left feet , :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
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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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 :idunno (Maybe, I'm being too much skeptic!)
Take care, Peace!
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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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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! :grin
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 :doh
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 :raspberries
The verdict(Thanks to my mom): MYTH BUSTED (I always loved that Myth Busters show on Discovery)
Take care, Peace!
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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.
Regards
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Ah yes. You're referring to our old friend "Dr" Ghulam. :crazy He is actually a member here but he's not allowed to post. :nana
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? :hmm
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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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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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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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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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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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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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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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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
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Dear Andy,
Please share your experience and feelings about wheatgrass tablet.Is it really reduce transfusion?
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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.
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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.
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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....
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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.
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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.
-
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.
-
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 :idunno (Maybe, I'm being too much skeptic!)
Take care, Peace!
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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.
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Andy I thought this combination is only used for gastrointestinal problems? What do you use it for?
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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.
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Here's a link to an article on turmeric and pain. Adding black pepper or fats makes it far more bioavailable.
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:wink thanks Andy. But where is the link?
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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???
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Hello Hardik,
I am interested for Hydroxyurea and want to give my baby.From July '2015 she taking wheat grass 500mg daily.Last week she completed 2 yr old. Please share your Hydroxyurea experience...
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Dear Lokki Maa
Can you plz tell me how much quantity in terms of tbs(tablespoon) does 500 mg will be??
Plz visit the facebook site of Thalpal and u will meet many people discussing about "hydroxyurea" and "Thallidomide" and about the doc in Pune(India) named as "dr Vijay Ramanan" who is treating Thal patients with wheat grass and either of these two.You can also get contact details of doc there.
On this site also many persons has refferred about it. and I had also talked to two person personally taking it.They are also giving positive response....One who is thal minor but is on regular transfusion last year due to growing needs had not has a transfusion from last 6 months(i.e approx 180 days) and her hb is still on 11...she started taking "Thallidomide" medicine in feb 2015 and the other is thal major 3-4 year child and is not transfused from last two months ....and they had started "hydroxyurea" medicine near june /july 2015
just Imagine all our near and dear ones will be free of transfusion , iron overload, pricking, child crying and all such complexities by taking only medicine.... :cheer
"Ohhh" what a thought but still confused whether to deal or not
I dont know what to say :mouthshut but if this medicine is really such useful and will have no side effects on long term on our babies ...then I also want to acknowledged it.
May be others can tell more about it
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Hello all,
I know 4 yrs old boy is free from BT since last 24 months because of whtargrass & hydraxurea, 1 boy 2.5 yrs old is free from BT since last 4 mnths bcoz of wheatgrass & lenid & , 1 girl 6 yrs old free from BT since 13 months , she is taking wheatgrass & thallodimide & all these are maintaining their HB above 8. That means in some cases hydrea is useful & in some cases lenid ....
There are many more who are now BT independent but all above 3 I know them personally & that's why I m posting details over here. All are taking Treatment under Dr Ramanan
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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.
hello andy sir
its apreaciable that you hv replaced ibrufin even after 19 ears of use and simply by turmeric n black pepper.
its great, i hv used turmeric in many cases and your example is also impressive.
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Hardik,
The use of thalidomide in thalassemia has not been well publicized. The only doctor I know using this with hydroxyurea is Dr Vijay Ramanan, and he has been fairly closed mouthed about his exact formula.
Let me be frank. There is far more money to be made with new drugs than with using cheap drugs like hydroxyurea and thalidomide. I believe that this is a big reason you don't hear more about it in the West.
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Thanks Hardik.I have no idea how much quantity in 1 tablespoon of 500 mg.Please help me how I will get help from Dr. Vijay Ramanan.
Whats your opinion Andy ?
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Just visit the site www.vijayramanan.com and u will get all details......and for patients and parents in India ....I want to inform that I know a person associated with a ngo who is trying to conduct free hla .....(which is necessary for bmt )....in your state only.....but his only condition is that minimum no of patients to be registered should be 15.....if any one is interested I can give contact no .....u can call them personally and get all details
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I am from Delhi. Please share the contact details.
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Dear Hardik,
I am from Bangladesh.Every patients of Dr. Vijay Ramanan has got benefit from his treatment or some other patients?Have you any idea please share.Bcoz If I want to get treatment from Dr. Vijay then I have to go India with my family....
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Hardik ,
Can you please elaborate more on the free HLA. Are you trying to suggest he wants 15 Thalassemia major patients and only for these 15 patients he will do a free HLA or it could be even 15 relatives (blood relation) for one thalassemia patients which he would also consider.
Lokhi maa : Dr Raman shared his email id with me and it was : bmtpune@gmail.com . You can trying emailing him about your sons case and see if you can get a reply. From what I have understood meeting him is he does try his novel therapy on every thalessimic child but it may just work for some and it may not work for some.
His private clinic address
Yashoda Haematology Clinic, Pune
#109, Mangal Murthy Complex, Tilak Road Landmark: Near Hirabaug Chowk, Pune
http://www.vijayramanan.com/contactus
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Thalassemia Society Pune Chapter having Patients - Parent meet on Ruby Hall Clinic on 17th October 2015 (Coming Saturday) and Along with other doctors Dr. Vijay Ramanan also is going to talk. If any one like to attened please do so.
http://thalassemiapune.co.in/
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hello everyone
pari 2005 ---->if you can manage ....plz record the conversation and kindly post it on site ....as we are far away so it is not possible for everyone to attend it....but if u or anyone in ur known who is attending the meeting ...can favor us by posting its recording(audio/vodeo).......it will be of great help.
Mukta and Anshul---->the person I m taking about is Mr Suchit Loundhe (09657453054).....He is doing such a noble cause of helping thal patients and parents...the condition for conducting HLA in your state is that ....minimum NO OF THAL PATIENTS(major /intermedia---whos BMT IS DESIRED) to be registered should be 15 and the donor can only be MOTHER, FATHER, REAL BROTHER, REAL SISTER......NO ONE ELSE IN FAMILY....kindly call him if anyone is interested .....he will give u all details ...you can also join then on WHAT'S UP with same no.....there u will get whole info.
Lokhi maa----->If u r really interested....then plz check for medical visa....govt has provided alot of facilities for thal.....jst take online appointment....you have to come a day before...stay in hotel....meet him....and can go same day back....he is such a busy person that he attends a patients only for 15-30 min ....give medicines... and told patients to come again after every 4 months.....As u r outside resident....kindly check...and try to contact if he can attend u through online.
Andy----->the confusion still persists .....If HYDROXYUREA ,THALLIDOMIDE ,LENID ....ARE SUCH OF GREAT USE ...then why dont any other doc in india prefer this....AS you mentioned about cost ....then cost from these also amounts alot to everyone here as I talked them ....and whenever we talked to docs about these medicines...they generally refuse it by saying that these medicines has long term side effects...as these medicines increases fetal hameoglobin.
I am confused that Blood transfusion also have its associated effects......+ .....iron overload problems....and its effects.
and if a person get rid of transfusions,...pricking,....iron overload,....and all such problems....then why not govt and other docs are paying attention to it....AS THALLASSEMIA is a big concept now.
Moreover Dr Ramanan says that if u r using this therapy then u have to wait for the blood to get down max to 6 before next transfusion ....as after starting therapy ....firstly blood goes down and then rises to maintain stability.....and after that maintain between 9-11.....or more depending upon body....
Doesn't this blood down factor effects growth as stability may take upto 3-4 months depending upon body...
When I talked to persson using therapy...they stated that baby / person remains active and is in good health condition though the blood level is low..
kindly guide about these medicines .....and above facts
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Thank you so much Mukta and Hardik..
But I'm so much confused... ??? ??? :huh :huh
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Hello Mukta,
Please share your novel therapy experience...
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Hello Andy,
Expecting your valuable advice.Pls reply...
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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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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, 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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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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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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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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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
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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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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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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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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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
制何首乌[processed] He Shou Wu: 15 grams
熟地黄Shou Di Huang: 15 grams
炙黄芪[processed] Huang Qi: 24 grams
党参Dang Shen: 12 grams
当归Dang Gui: 12 grams
补骨脂Bu Gu Zhi: 6 grams
鸡血藤Ji Xue Teng: 18 grams
阿胶A Jiao: 12 grams
鳖甲Bie Jia: 12 grams
砂仁Sha Ren: 6 grams
胎盘 Tai Pan : 12 grams
All the herb ingredients were like 200 to 300 gm. All of them were to be emptied in 0.5 litre water and boil for 30 to 40 mins. Then let it cool down to 1 mug of mixture, just take the water with the extract.
It did help me to some extent.
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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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
制何首乌[processed] He Shou Wu: 15 grams
熟地黄Shou Di Huang: 15 grams
炙黄芪[processed] Huang Qi: 24 grams
党参Dang Shen: 12 grams
当归Dang Gui: 12 grams
补骨脂Bu Gu Zhi: 6 grams
鸡血藤Ji Xue Teng: 18 grams
阿胶A Jiao: 12 grams
鳖甲Bie Jia: 12 grams
砂仁Sha Ren: 6 grams
胎盘 Tai Pan : 12 grams
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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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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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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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Yes, wheatgrass is available in tablets and it's basically the same as the powder. I recommend organic. If you have any concerns about using wheat, organic kamut grass is recommended. Kamut is an ancient ancestor of wheat and has not been the victim of hybridization, so it is far more unlikely to cause allergies like wheat does. You can easily find these products online.