Thalassemia Patients and Friends
Discussion Forums => Miscellaneous Questions => Topic started by: Andy Battaglia on July 05, 2013, 04:39:11 AM
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Is anyone familiar with Dr Vijay Ramanan in Pune, India? There is much conversation about the doctor these days and as always, I prefer facts. Can anyone tell me about him? Is anyone being treated under him or was previously? For how long has he practiced in Pune?
This is important because the doctor has received much publicity and some are skeptical about his claims. Again, I must reserve judgment until I have facts.
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Hi Andy,
It is the blog of Dr Vijay Ramanan.
http://haematology.blogspot.in/
The address of Website is
http://www.vijayramanan.com/
There are certificates of him on the blog , u can get the brief idea about his practice in Pune.
He is pioneer in combining the Hydrea with Wheatgrass tablets and Anti oxidants like L-Carnitine.
What's the difference is , he prescribe hydrea to Thal. Major.
Have you contacted him on mail ?
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Yes, I have contacted him and have seen his website. Because there is one statement on his site that is apparently not true (concerning collaboration with Dr Sodani), and because he has become a frequent topic of discussion, I would like to learn more about him, so as to be able to advise patients whether or not they should try his protocol.
If you have any direct experience with him or know about his clinic, please comment.
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Hi Andy,
I do not have direct experience with him and have not visited pune.
But those who are benefitted by the treatment of Dr Vijay Ramanan , mention him as God.
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I feel that I have now spoken to enough patients in Pune to feel that they are getting good treatment under Dr Ramanan. He is using a program of hydroxyurea and wheatgrass and has some successes, with some patients off transfusions for at least 10 months. I am certain that their phenotype is intermedia, but formerly transfusion dependent, so this is a significant improvement for them. The doctor has told me that he has had mixed results, as have other doctors working with the drug. I feel that with a blood supply that is not adequate or totally safe, that patients who do experience enough increase in Hb to be at least at 8 may find this is a good alternative to transfusions.
The doctor seems quite good at self promotion and I think that's great because he is using it to attract patients into a good treatment program. I think perhaps that has been mistaken by some as making it about him, but he is using basic marketing to get the attention of the thalassemia patient. I wish the doctor much success and will be asking him about his BMT program shortly.
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Can anyone share Dr. Ramanan's email id or any other contact detail?
Regards,
Himanshu
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bmtpune@gmail.com
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http://articles.timesofindia.indiatimes.com/2013-06-20/pune/40092346_1_bone-marrow-transplant-patients
This article appeared in Time of India on 20th June (leading newspaper in India)
PUNE: At 13, Ali HousseinMoayad is a regular teenager hooked to videogames. What sets him apart from other teens is that this is the first time in his young life when he can play without feeling unwell. For 11 years, Ali underwent blood transfusions every 21 days to treat his disorder of thalassemia major, which made it difficult for his body to synthesise its own haemoglobin.
But things changed for the Iraqi teenager last October, when he successfully underwent a bone-marrow transplant at a hospital in Pune, with only a partially-matched bone-marrow transfused from his own mother using the 'Haploidentical transplantation' protocol. Eight months on, Ali is free from the once binding need for blood transfusions and all medication related to transplants. His haemoglobin has touched a healthy 14.7gm/dl and he is now prescribed only simple drugs to keep off viral infections.
Ali is among a handful of patients who have been successfully treated in the city using the haploidentical transplantation method for disorders such as leukaemia and aplastic anaemia.
Ali's recovery has brought much relief to his parents. Ali's father, Houssien Moayad Houssien, who has brought him again to Pune for a routine check-up says their lives have changed following the transplant. "My daughter too was a thalassemia major, but she could be treated as her bone marrow matched with her elder brother's. Ali's bone-marrow, however, did not match with his siblings. Initially, I was very sceptical about coming to India for treatment, but I got a lot of confidence with the kind of treatment we received here. I am very happy because Ali has become healthier and now regularly attends school," he says.
Haematologist Vijay Ramanan, who treated Ali, says the treatment's success is significant because it expands the donor-base for thalassemics who don't find a perfect bone marrow match in their family. "Only 15-20% of the thalassemic patients are able to find a perfect-match donor in their siblings. The rest of them can get an unrelated donor from the bone-marrow registry or the cord blood bank, which can be a very expensive procedure. A haploidentical transplant makes it possible to treat the disorder with fewer complications, even with a 50% match of the bone-marrow, which is usually of the mother," he says.
Ramanan said in this treatment the bone marrow from the mother is transfused into the child using the normal transplant procedure. "While in a normal transplant, the immunity of the patient is suppressed for about 6-9 months, in this case, the backbone of the therapy is the post-transplant treatment with a drug called cyclophosphamide, coupled with the right amount of patient care before and a little after the transfusion," he says.
Vibha Bafna, paediatric haemato-oncologist with a city hospital says the therapy is good, but notes that it needs the correct conditioning for it to be successful. "Haploidentical transplants are definitely a great advancement for patients who require a bone marrow transplant, because identical matches are either not possible, or are very expensive. But the treatment needs to be done with a lot of care, and the right amount of pre- and post-conditioning of the patient to reduce risk of infection and rejection. Once patients have successfully crossed the one-year post-operative period, they can lead an absolutely normal life," she says.
The biggest advantage of this line of treatment is the availability of the donor in the form of the mother or father, says paediatric haematologist Sandip Bartakke. "A complete match of the bone marrows of the patient and donor is the ideal treatment. But that does not usually happen and a haploidentical transplant can be considered in such cases. There is a greater risk of rejection, but with more research being done on the issue, it has the potential to become a widely accepted form of treatment in the coming years," he says.
Understanding haploidentical transplantation
* Doctors administer just enough chemotherapy to suppress the immune system, which keeps patients from rejecting the donated marrow without harming their organs. As a result, the side effects are much milder.
* Three days after the transplant, a patient is given a high dose of a drug called cyclophosphamide, which "re-boots" the immune system by sparing the donor's stem cells and allowing them to establish new blood cells and a new immune system. The budding immune system is re-trained to see the patient's body as friend, preventing the patient from rejecting the transplanted bone marrow.
* This procedure, which allows transplants with half-identical, or 'haploidentical' (related) donors has similar outcomes as seen in matched transplants.
* The technique, which has been developed by physician-scientists at the Johns Hopkins Kimmel Cancer Center in 2000, greatly expands the potential donor pool, making more patients eligible for the transplant.
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Surely a good option for those that don't have a complete HLA match
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Can anyone share Dr. Ramanan's email id or any other contact detail?
Regards,
Himanshu
mvijayr@gmail.com
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I feel that I have now spoken to enough patients in Pune to feel that they are getting good treatment under Dr Ramanan. He is using a program of hydroxyurea and wheatgrass and has some successes, with some patients off transfusions for at least 10 months. I am certain that their phenotype is intermedia, but formerly transfusion dependent, so this is a significant improvement for them. The doctor has told me that he has had mixed results, as have other doctors working with the drug. I feel that with a blood supply that is not adequate or totally safe, that patients who do experience enough increase in Hb to be at least at 8 may find this is a good alternative to transfusions.
The doctor seems quite good at self promotion and I think that's great because he is using it to attract patients into a good treatment program. I think perhaps that has been mistaken by some as making it about him, but he is using basic marketing to get the attention of the thalassemia patient. I wish the doctor much success and will be asking him about his BMT program shortly.
Personally, based upon interaction of two thals and their families with Dr Ramanan, I find that he is quite an aggressive doctor. Moreover, the treatment course he is proposing could be potentially life threatening or damaging to long term health of Thals.
It is quite a huge risk for any reasonably well-cared-for thal to take. I would strongly advise against it.
Poirot
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Hello Poirot,
Can u please explain what exactly u observed as life threatening or damaging to long term health with respect to treatment of these two thals by Dr Vijay Ramanan?
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Hello Poirot,
Can u please explain what exactly u observed as life threatening or damaging to long term health with respect to treatment of these two thals by Dr Vijay Ramanan?
Hi Dharmesh,
His course of treatment is the following:
1. Stop transfusions and do not transfuse unless HB falls to 6.0 gms
2. Stop chelation completely, stop all other vitamins and supplements completely
3. Start taking Hydroxy Urea tabs
4. Do this for 6 months, before you can judge whether the treatment is working or not.
Given the iron loading of many Thals in India, to suggest that chelation be stopped completely is hugely risky, if not a criminal piece of advice. And to suggest to young thals that HB be allowed to drop to 6.0gms is beyond my comprehension.
I strongly, strongly advised these parents not to follow this methodology. It is one thing, in the case of thal major, to take Hydroxy Urea in addition to the rest of your treatment. It is another to suggest that one should rely on Hydroxy solely. There is no evidence whatsoever that Hydroxy works as a fetal haemoglobin inducer in Beta-zero thals.
Poirot
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Hi Dharmesh,
His course of treatment is the following:
1. Stop transfusions and do not transfuse unless HB falls to 6.0 gms
2. Stop chelation completely, stop all other vitamins and supplements completely
3. Start taking Hydroxy Urea tabs
4. Do this for 6 months, before you can judge whether the treatment is working or not.
Given the iron loading of many Thals in India, to suggest that chelation be stopped completely is hugely risky, if not a criminal piece of advice. And to suggest to young thals that HB be allowed to drop to 6.0gms is beyond my comprehension.
I strongly, strongly advised these parents not to follow this methodology. It is one thing, in the case of thal major, to take Hydroxy Urea in addition to the rest of your treatment. It is another to suggest that one should rely on Hydroxy solely. There is no evidence whatsoever that Hydroxy works as a fetal haemoglobin inducer in Beta-zero thals.
Poirot
I'd completely agree with Poirot in this case here.
Stop supplements and chelators? No thanks, go away, I don't want any treatment then. I would in no way stop those two things ever in my life. And 6 hb? Seriously? I now get pains even if my hb falls around 9.5, I cannot even imagine what I'd be suffering in 6.0.
I'd better live as thal major rather than leaving a creepy transfusion free life.
Just my two cents.
-P.
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I have requested a response from Dr Ramanan. I feel it will be in his best interests to reply.
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Dr Ramanan's reply.
Dear Andy,
I would like to clarify that we continue chelation for all children.
the response is variable depending on time of transfusion.
My patients who responded have been hounded. Majority of responders are silent.
i will share a paper once its published at our national conference this year in November.
I have no ulterior motive in making Thalassaemics take hydroxyurea or some cholorophyll filled stuff.
I dont need this as my bread and butter is Bone Marrow and Stem cell Transplant NOT Hydroxyurea +/- Wheatgrass.
Chelation should be continued. I used to ask them to stop for a short period as there were too many tablets to consume. For your kind information 90% of patients DON'T start chelation at Ferritin of 1500 and neither do they continue regularly. It was for practical reasons and COST too that i HAD recommended. I have stopped making recommendation. The Hb of 6 gm% came to me as an idea when i was treating JS. i have some idea but there is no documented paper on my thoughts.
I feel that there is much misunderstanding about Dr Ramanan and that there have been many rumors spread about his work that were based on honest misunderstandings of his methods. I have asked Dr Ramanan to feel free to use me as an intermediary for any messages he wishes to share with us, as he has understandably become wary of social media. I think some things that have been done out of necessity have been misconstrued and that the doctor has been refining his methods as he observes results.
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I feel that some confusion has risen due to Dr Ramanan's individual approach and assuming that what he instructs one patient is the same for all. This is not the case, as the doctor tries to manage each patient according to both financial status and the patient's ability to manage compliance. He has to deal with the reality each patient brings to the table and having a one size fits all approach is not productive with individuals, who may or may not be able to afford all that is required or cannot fully comply with treatment at the present. I respect this individual approach , but feel I should point this out so we are aware of how the doctor works with individuals.
I also realize that the doctor's apparent self promotion turns some people off, but I also am quite aware of how important self promotion can be when trying to reach those who need help, so I will not criticize the doctor for marketing techniques that I also use.
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Dr Ramanan's reply.
I feel that there is much misunderstanding about Dr Ramanan and that there have been many rumors spread about his work that were based on honest misunderstandings of his methods. I have asked Dr Ramanan to feel free to use me as an intermediary for any messages he wishes to share with us, as he has understandably become wary of social media. I think some things that have been done out of necessity have been misconstrued and that the doctor has been refining his methods as he observes results.
Dear Andy,
I don't know about misunderstanding much - I got the information directly from the parents who spoke with Dr Ramanan. They were both advised what I have outlined. The Medical Director of our TX centre also spoke with him, at the request of one of the parents - and he said exactly the same thing to her.
Why would anyone want to spread rumours about him? And, his patients have been hounded? By whom? And, why? If his treatment works and the provides the same or near same quality of life ex-transfusions, I would be the first to stand in line at his doorstep.
I only got involved in this whole thing because the mother of this thal child called me in shock, asking for advice, since the father was quite keen to try the treatment - and her common sense was telling her not to go for it.
Our goal at our centre on iron chelation is to get Ferritin levels below 1,000 and then below 500. We now have two other people at the centre, besides me, with Ferritin levels in the normal range. He told our medical director that he wanted chelation stopped because he did not know how hydroxy would work in conjunction with exjade/kelfer - hence, stop the latter. Which is a fair comment, if not for the huge risk in stopping chelation.
And, as far as money/treatment is concerned, these two thals are on the best possible treatment currently - transfusions, chelation, supplements and regular tests. The older thal, a youth aged 24 years, has turned his life around completely since he started to comply with this regime over the past 3 years.
So, yes, I was quite peeved with the suggested treatment of Dr Ramanan.
Poirot
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He has to deal with the reality each patient brings to the table and having a one size fits all approach is not productive with individuals, who may or may not be able to afford all that is required or cannot fully comply with treatment at the present. I respect this individual approach , but feel I should point this out so we are aware of how the doctor works with individuals.
I also realize that the doctor's apparent self promotion turns some people off, but I also am quite aware of how important self promotion can be when trying to reach those who need help, so I will not criticize the doctor for marketing techniques that I also use.
At our thal centre, which I am confident is now the best in the country with a really caring Medical Director in charge, we do try to counsel and insist on a standardised care protocol for everyone - we try to inculcate compliance with the protocol, instead of trying to modify the protocol because a child is not complying. The success we have had with younger thals and their growth is just heart warming in this respect.
For patients who can not afford the care, in our centre at least, we now have tie ups for free chelation for poorer patients. Supplements still have to be paid for though - so we prescribe the minimum that they can afford. As parents see the difference in their children with the protocol, compliance actually improves and they actually try and do the best they can. Their apathy falls away. Blood is virtually free at the centre - although that is now causing the centre financial hardships, and we have to figure out a way to fund raise a corpus - and it is safe blood, which is a major concern in India.
I have always been willing to try new stuff for my care/treatment - I would sign up for the new gene trial like a shot, if they would have me - but it should not militate against common sense and the risk-reward ratio has to be really favourable. From what I have heard to date, it is not in the case of Dr Ramanan's treatment with hydroxy.
I look forward to reading his peer reviewed paper on his treatment - hopefully he will publish it soon.
Thanks
Poirot
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I would be out of order if I didn't mention this:
Our standardised care protocol borrows heavily from all the information and advice on this group- so, many, many thanks to Andy and all the contributors.
You make a difference far beyond your own worlds!
Cheers
Poirot
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Dear Poirot,
I am not agree with the points outlined by you.
I have a different opinion here as i also know two thals who are Ex-transfusion with the help of Hydroxyurea and Wheat grass treatment suggested by Dr Ramanan Sir.
They are chelating, taking supplements.
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Hello all members,this is inform you all that i was taking blood tranfusion till 2012 but now i am cured by dr.Ramanan in pune BY USING HYDREA and wheat grass.I have not taken blood tranfusion for last 16 months my hb is around 10gms .before visting dr.ramanan i had visted many doctors in india thsi doctors are top most doctors in india for thalassemia they never told me or advice any other treatment then blood tranfusion and chelation.as i am working wiith with thalassemia society of pune as committee member i know many patients in pune who have benfited by hdrea and wheat grass treatment.In pune there are around 70 patients who are benfited by dr.ramanan treatment of hydrea. this patients are of all ages .My reports of moleular studies show that i am thalassemia major still i am benfited by this treatment.
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Hi Jatin,
are you beta zero thal major??
My son is E-beta thal, beta gene IVS 1-5 G-C.He is taking hydrea from 3.5 yrs. now he is 7 yrs old.I dont know whether it is giving any advantage or no but still we are giving.
regards,
Dip
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I would very much like to hear from more of Dr Ramanan's patients, whether the reports are positive or negative. I don't think it does a service to any of us to have doubts persist about the doctor, so if anyone has personal experience with Dr R, please either post here or message me if you prefer to keep your comments private. I have heard good reports from Jatin and one other who no longer transfuses, but this is a very small sample. Can we hear more from others? I would also like to hear from others who have experience in his bone marrow transplant program. This is very important, as Dr Ramanan has garnered much attention and obviously, there are still questions about his work. We would love to clear the air so everyone can have full confidence in their choices of doctors.
I will also continue to urge the busy doctor to publish results for both programs. I know it is very time consuming, but it would be a worthwhile endeavor.
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I would very much like to hear from more of Dr Ramanan's patients, whether the reports are positive or negative. I don't think it does a service to any of us to have doubts persist about the doctor, so if anyone has personal experience with Dr R, please either post here or message me
I agree entirely with this approach, Andy.
This is the first that we have heard from Jatin here, and this is his very first post, too. Welcome, Jatin!
So, it would be good if you share your history with us, Jatin - I have never heard of 10gms being maintained even by Intermedia on Hydroxy - so, your results are breath taking.
Maybe, there is a particular genotype that is helped really well by Hydroxy - and we do not know that and these are the first test results.
It would be great if Dr Ramanan would consider presenting his results at the upcoming TIF conference at Abu Dhabi - if he does not have the time to get his paper published shortly.
Dharmesh,
Are these patients based out of Ah'bad/Rajkot?
I do hope that Jatin will post more data.
Thanks
Poirot
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Dear Poirot
No.
Both are from Pune. One of them is JS.
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I met Dr Vijay r on 2nd August 2014 in a public conference .I personally found him very confident abt hydroxyurea treatment for thallasmia major who recived their first transfusion after 12 months or more
Secondly he is also confident for cbt or bmt with 4/6 hla matching
As I am expecting baby this month and planned to preserve cord blood ,I will meet him for consultation very soon if hla matches
But I want to tell one thing that only after meeting him ,I became optimistic and made up my mind to plan for cbt in near future inshallah
Allah knows the best and everything
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he is a great doc!!
I met him personally got an aggrressive and v.much needed treatment.
he also prescribed me chelation (combo of two oral chelator) with hydrea and wheatgrass
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We are still awaiting for Dr Ramanan to publish his paper, detailing his success with Hydroxyurea.
I remember him posting that this would be in November, last year.
Meanwhile, there was also a Thal event in Ulhasnagar (an extended suburb of Mumbai) a couple of months back, where both Dr Ramanan and Dr M B Agarwal were part of the panel, advising Thal patients. Dr Ramanan's proposed treatment came under great scrutiny - and he presented his success story, Jatin, in person - on being gently questioned by Dr Agarwal, it came out that Jatin was Thal Intermedia, and not Beta Zero or even E-Beta.
So, pls do be careful about this whole hydroxyurea thing - there is no documented evidence that it helps Thal Majors in any way.
Poirot
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One ppt file has been uploaded by Dr Ramanan on his own website with reference to hydroxyurea.
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Dr R told me he has found that hydroxyurea does not have value to those who transfused during their first year (true thal majors). Its value lies more with those who can maintain an Hb of at least 6 without taking blood. Even then, I know patients who can maintain in that range who got little or no benefit from the drug. It really is a case by case basis for those whose Hb is naturally high enough that an increase of 2 points will free them from transfusion. Dr R said his success rate in these patients is about 20%, which is nothing to brush off, but also nothing for people to pin their hopes on. For borderline Hb patients, it may be worth a try.
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Saw this post on my FB wall. Posting under this topic as this has reference to Dr. Ramanan. Dr. Ramanan also claims to have done more than 220 transplants in one of his posts.
http://www.dnaindia.com/health/report-say-goodbye-to-blood-transfusions-1777546
https://www.facebook.com/lists/1375125612736173
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The post about Jatin is quite old. He has just passed 1000 days without transfusion. He is doing quite well, as are many others under the care of Dr Ramanan. I find it somewhat frustrating to see this success and realize that most doctors are still resistant to trying hydroxyurea and wheatgrass together in thal patients. As long ago as the late 1990's, we saw trials that recommended hydroxyurea as an alternative, especially in countries where funds are low and blood safety is not good. I realize that hydroxyurea is not an expensive drug in relative terms and will not enrich the medical industry like many other therapies do, but we should be far more concerned about the lives of patients than we are about the financial interests of the medical industry.
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My son is under treatment of Dr. Vijay Ramanan and he is doing well. No transfusion in last 6 months. Hb level is 9.5 to 10.5. Thanks to Dr Ramanan.
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My son is under treatment of Dr. Vijay Ramanan and he is doing well. No transfusion in last 6 months. Hb level is 9.5 to 10.5. Thanks to Dr Ramanan.
Wow, I just came to post in this thread today. Where do you live?
The intention of posting this today is that my dad visited today a seminar of Dr. Vijay Ramanan which was organized free of cost as a charity service by the grandfather of the son who has benefited from his treatments and was wishing that other thals can try to get benefit of this too.
I know this for at least 4 years now. I was skeptic like you all. Didn't believe. But after seeing live cases in front of my eyes, I was intrigued too. There's no 100% success rate but what's in trying? The dose he gives for thal is likely minor and won't cause major side effects. His excuse always has been (and so of his patients) is that isn't it better than the side effects or risk blood transfusion poses? Iron eats your body and organs out like anything.
One person of 18 years old is 18 months transfusion free, another one even graduated as MBBS doctor this year and is thal! He haven't transfused since past 2 years. And the grandson of the organizer, he's free from transfusions since 8 months.
You know what, even the doctors who were skeptic (my dad's very close childhood friend who's a reputed podiatrist in our state) was even against it. But when we called him to ask for another option now whether should we go ahead or not, he said yes, give it a shot. He's himself seeing some patients at his clinic which are now transfusion free. He mentioned that it's a 50/50 case, may work or may not work. But definitely give it a go.
We will take an appointment now to go to Pune. And I'll keep you all updated on this. If this works (which has worked for many), it's like dream come true lol, not transfusing. Recently I also get some fever and weakness after blood so lately it's a lot troublesome so getting any benefit from this (even a 1 or 2 month duration) would be amazing.
-P
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My son is under treatment of Dr. Vijay Ramanan and he is doing well. No transfusion in last 6 months. Hb level is 9.5 to 10.5. Thanks to Dr Ramanan.
And btw, he's thal major right? How old is he?
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Just saw this post on Facebook today.
"On the eve of GOD's birthday standing next to my "NEXT TO GOD"!!
#2_years_of_geniusness_without_any_side_effect"
This is a quote from a patient who has taken Dr Vijay's treatment for two years. It is working for so many people. I see comments like this regularly on Facebook form patients taking Dr Ramanan's treatment.
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BTW, the patient who made that comment has himself just recently become a medical doctor.
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BTW, the patient who made that comment has himself just recently become a medical doctor.
I guess we are talking about same guy whom my father spoke to today. Jobanputra is his surname right? :)
Are you talking about Thalpal group? I must have missed to join it. I have just applied to join the group right now.
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Yes, it is he but the post was on his personal Facebook page.
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Pratik,
We live in Maharashtra. Perhaps you are referring to his recent seminar at Surat. My son is around 10 years old.
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I just returned yesterday from visiting Dr. Ramanan in Pune. Very nice nature and understanding. I had a flight for 2:30 PM and his receptionists were not letting me in. I went in straight away and he took my appointment.
So I will finally be starting my treatment I believe from today. He said I have good gene/dna structure based on my mutant test so there's a good chance this therapy might work.
He asked to allow Hb to drop till 6 as long as I feel normal and my pulse does not exceed 120. Then the body will start producing on it's own he says. I am just concerned about the pain I get when my Hb drops, that's it.
I am hopeful, will keep you all updated.
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Pratik, does he also have you using wheatgrass and folate?
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Pratik, does he also have you using wheatgrass and folate?
Yes.
Also Erykine injection. This is something new I learned. I wonder why doctors here never tried suggesting this injection which produces Hb.
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Erykine is EPO and has been the subject of studies about increasing HB. The studies usually conclude with more study is needed. Frankly, I feel it is the low cost of EPO that prevents more research. No one is going to get rich selling EPO.
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Erykine is EPO and has been the subject of studies about increasing HB. The studies usually conclude with more study is needed. Frankly, I feel it is the low cost of EPO that prevents more research. No one is going to get rich selling EPO.
Yeah. There is very less interest for what doesn't make them money.
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Dear Pratik
Can you pls give your e-mail I'd. Wish to ask many questions!
Howz you doing with Dr Ramanan's treatment?
Am mother of 9 year old thalassemia major daughter.