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[Lokkhi maa]

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...

[hardik]

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....
"Ohhh" what a thought but still confused whether to deal or not

I dont know what to say  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

[msarika]

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

[DrRajpal]

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.

[Andy Battaglia]

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.

[Lokkhi maa]

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 ?

[hardik]

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

[anshul]

 I am from Delhi. Please share the contact details.

[Lokkhi maa]

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....

[Mukta]

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

[Parin]

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/

[hardik]

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

[Lokkhi maa]

Thank you so much Mukta and Hardik..
But I'm so much confused...

[Lokkhi maa]

Hello Mukta,
Please share your novel therapy experience...

[Lokkhi maa]

Hello Andy,

Expecting your valuable advice.Pls reply...