Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: kabir_love on May 10, 2007, 07:47:57 AM
-
hi everyone. now its been a long time my son taking rodex and now he is very well, condition very good , healthy and HB is increasing constantly we check after 1 month gap.
we didnt need to go for any blood transfusion till now he is 1.2 years.
i really confirm you guys he was detected thal. major by every hospital here even the best ones in india. now after this treatment and i thank to god that my son is in good state. and now doctors are saying he must be thal. intermida or other, this is bull shit. that time these docs. said u see just 2 week he would need transufion and now its 8 months......
i hope every one should get well soon.
love and regs
micky
-
Hi mickey,
What is his Hb now?
Take care, Peace!
-
Hi Mickey
Congratulations
Could you please tell us whom to contact if we want to know more about the rodex???
Manal
-
hb level of my son when we found out
oct-2006 hb level- 7.7
dec-2006 hb level-6.7(just started rodex, 8 months course dec-aug)
jan- 2007 hb level-6.2
feb-2007 hb level-6.1
april-2007 hb level-6.2
may 2007 hb level-6.5
JUNE-JULY 2007 level- 7.6
JULY- 7.4
AUGUST 6.6 ( i dont think the report is correct as my son physical position is much more beter i had talked to doctor so ill do the re test again.. but im not scared as ill see after the re test.)
novermber(07)- 7.2
this is how the hb level is goin as per reports. but this condition i can see improvment. im very happy atleast my son is fine.
"" hi i m just modifing this column as per test date i had done.""". course for rodex is now for 2 yrs..
as the last increase in hb level (june-july) is i think more of because of DR. mulkrajdas .. by his healing therepy for which now i had explained in my new post please read that.
-
Hi Mickey,
Hb of 6 is nothing to get excited about. Your son is showing typical signs of being Intermedia that his Hb is hovering around 6-7.
You have already told us that your child was diagnosed Major and not Intermedia. However, know that Intermedia is a bit complicated and does not show up in the regular methods that are used for diagnosing the type of Thal. unless a DNA test has been carried out to identify the exact Intermedia mutation.
So, unless your child has undergone DNA, it is most probable that he was misdiagnosed as Thal. Major.
Anyway, the good news is that Intermedias respond nicely to HbF inducers that make the overall Hb go up. This is exactly what is happening to your son. It is most probable that Rodex is nothing more than a HbF inducer.
I wish you all the best, that this medicine is sufficient for your son that he does not require frequent blood transfusions and I hope that you will be able to manage his Intermedia superbly with the help of this medicine.
Take care, Peace!
-
Hi Mickey,
Who is measuring the Hb level of your son? is it the Doctor's office? Since there is No scientific paper that I have seen that suggest "Rodex" can cure Thal, I will suggest that get your son's Hb level checked by an independant Lab that is not associated with the Doctor who is doing the treatment.
Please do not get me wrong. I hope and pray that your son's improvement is real and he grows up as a healthy boy.
-
Thanks Mickey
But could you send me his e mail or the center email please
Manal
-
Hi Mickey,
:agree with sajid and bostonian,get your son''s DNA checked,if it's available for you,i also think that your son could be an intermedia, but hb of 6 is NOT GOOD for a growing age kid,keep a close watch for any kind of bone deformation, and try hydrea if you can.
:goodluck
ZAINI.
-
Mr. Mickey,
I sincerely advise you to consult a specialised thalassemia center for your son treatment. I am not saying Rodex is not working for you but HB of 6 is not a good sign.
Regards
-
hi every one
as what sajid is saying about the DNA TEST. this test i had done already when he was confirmed as thal. major by his blood reports as hb was goin down , then we went to apollo hospital there they had done NAT TEST ( they said is a new test they just started for DNA to confirm for thal. major or intermediate)
for the blood test. i had never done with the doctors lab. i had done with other well know pathology labs for my confirmation also.
now as my son is getting his teeths out so this time child get little irritation and also he goes donw so i m waiting for another week then ill do the test. again
regs
mikcy
-
i had consulated with the doctor(mathur) as some time my son seems red and some times pale little yellow. and for hb level last was 6.5 we consultaed with him , he said that if its showing 6.5 then in actual its above 7, but as bone marrow is not producing and goin his function properly so this medician which we give , his bone marrow takes it and then work and increase the hb level. now its the last 2 months of his medican course.
till now we had not done transfuion not even single and son is very very active , no bone disformations and spleen are perfect as we keep checking him with other child speclist docs.
i hope now hb level is about 7 or above as per his conditions. rest ill post when we will get this test done next week.
regs
micky
-
Thanks for the update Micky!
Wish you all the best luck :goodluck
Take care, Peace!
-
just got test result.
hb level now- 6.6 (after 2 months before 6.5)
as per doctor it should be more than 7 but as bone marrow and body is consuming the medican at more rate so thats y. and according to him the formula is working at good rate.
regs
micky
-
HEY..
WELL ITS VERY MUCH HARD FOR MANY OF OUT THERE BELIVEING IN ANY OTHER CURES APART FROM ALOPATHY TREATMENTS... SO ALL THIS TIME HERE I HAD WONDERED MANY PLACES FOR THE TREATMENT OF MY SON TO LOOK FOR ANY POSSIBLE CURES. CAUZ DOCTOR LEFT ME WITH ONLY CHOICE OF BOOLD TRANSFUSION WHICH I JUST COULDNT ACCEPT LIKE THAT TO GIVE MY SON THIS LIFE..
I CAN FEEL WHAT OTHERS HAD BEEN THROUGH. BUT WHAT I HAD BELEIVED AND SEEN THAT THERE ARE THINGS THAT WORKS BUT SCIENCE HAVE TO ANS. FOR THAT AND WHEN IT REALLY WORK AND REPORTS LOOK BETTER THEN DOCS GIVE OTHER REASON AND CHANGE THERE VERDICTS TO OTHERWISE.
MY SON DIGNOSE AS THAL. MAJOR CONFIRMING DNA TEST AND OTHER BY BEST DOCS IN INDIA. NOW BY SOME TREATMENT IM TAKING FROM A HEMOPATHIC DOC. THEN THESE DOCS SAID IT WONT WORK AND YOU CAN SEE YOUR SONS CONIDITION IN A WEEK TIME ONLY.
NOW ITS 8 MONTHS AND REPORTS ARE BETTER SO NOW THEY SAID HE MIGHT BE INTREMIDEATE, ANYWAY.
NOW IN ESCORTS HOSPITAL I HAD SEEN A DEBATE ON TV FOR THALS , THEIR DOCTORS SAID THEY HAVE A PATIENTS WHO ARE ON AYURVADIC TREATMENT FOR 15/10 YEARS NOW AND TILL NOW NO B.T FOR THEM,, THERE HB LEVELS IS INCREASEING AND STABLE NOW 15 YRS HAD PASSED FOR THESE PATIENT. HE WERE THAL MAJOR.. COST FOR THIS TREATMENT 300 US/MONTH.
DR. MUKUL DAS ( AN INDIAN CHEMICAL SCIENTIST WAS WORKING IN GERMANY HIS SALARY WAS ABOUT HALF MILLON USD/YR) GOT SOME POWERS TO WORK WITH ENERGY THAT SURROUNDS US AFTER DOING MEDITATION FOR 30YR, NOW WORKING AND CURING PEPOLE WITH DISEASES WHERE SCIENCE FAILS.. FOR FREE. IN MUSSORIE.. JUST BY TOUCHING THE SOURCE OF DISEASE AND TRANSFERING THE POWERS.
I VISTED DR. MUKUL DAS AND MET WITH PATIENTS EVEN SERNIOR DR. FROM VARIOUS PART OF INIDA TAKING TREATMENT AND GETING GOOD RESULTS. THIS TREAMENT NOW HAD BEEN UNDERTAKEN BY GOVERMENT AND INDIAN TECHNOLOGY FOR RESEARCH THAT HOW IS THIS WORKING.. I MET THAL. PATIENT ALSO AND THERE HB TEST WITHOUT ANY MEDICION OR BT. IS INCREASE CONSTANTLY AFTER EVERY 10 DAYS TEST. POLIO PATIENTS LIMBS AND BONES TAKING THERE PALCES BACK TO NORMAL.. PARALISES PATIENT MOVIGN THE PARTS IN JUST 5 DAYS- 7 DAYS... AND CHILDREN BORN WITH DELAYED MILSTONES( HAVE SLOW GROWTH) STARTING SHOWING RAPID ACTIVITES.
SO AS WHAT I HAD SEEN IF THIS IS POSSIBLE THEN MANY THINGS WHERE SCIENCE CAN NOT DO ANYTHING ARE POSSIBLE AND THERE IS NO ANS. FOR THESE THINGS.
I REALLY PRAY THAT MY SON TREATMENT WORKS QUICKLY SO THAT MANY OF U ALSO GET BENEFITS AND UNDERGO THIS CURE....
SCIENCE ="WHAT IS IN OUR KNOWLEDGE".. DO WE KNOW EVERYTHING NOW??
-
please explain this:
WHILE TAKING TOUCH THEREPY FROM DR. MUKUL DAS MY SON 1.2 YRS OF AGE, I SEE THAT HIS COLOR CHANGES TO YELLOW AND AFTER THAT STARTING GETING REDISH. THE CHANGE IS SO NOTISABLE THAT ITS LIKE A CHAMILION......
NOT JUST ONE TIME,,, NOW EVERY TIME I TAKE IT. HE NEVER PUSH PRESSURE AS IT STOPS BLOOD FLOW JUST TOUCH HIS HAND AND BACK BONES. AND HIS WHOLE BODY AS IF TAKING ALL THE THING INSIDE AND GETS YELLOW AND AFTER 5 MINS ITS DONE. THEN IN 2-3 HR GET REDISSH AS IF HB SHOOTS UP.
ANYWAY ILL SEE THE RESULTS IN 8 DAYS HE SAID.
-
Hi Micky
I believe like you that we know very little in science in spite of the all the technology that has been reached world wide. At the same time when we have one of our children ill , we as parents seek every possible and impossible way to cure our children and sometimes some people abuse this desire. So please make sure that you are mointering your child carefully.
Wish you all the best in whatever you are choosing and please keep us updated
Manal
-
ya manal. though i didnt had knowledge before that what to monitor as i was just thinking that if the hb is stable or increasing then he is fine. what all of you suggested me for monitoring im doing the best and not taking any chance.. so im happy after checking my son with every speicalist regarding growth and other things i read in post to look after.
thanks every1.
regs
micky
-
just got test result.
hb level now- 6.6 (after 2 months before 6.5)
as per doctor it should be more than 7 but as bone marrow and body is consuming the medican at more rate so thats y. and according to him the formula is working at good rate.
Kabir_love, To my knowledge and undertsanding, a Hg of 6.6 is 6.6. The explanation by your doctor that it is actually above 7 is incorrect. I hope you do understand that Hg level in the rang of 6 to 7 is not healthy for a growing child. Please take your son to a known THAL specialist near your hometown and get your son treated there. You son is very young. he has the chance to grow up as normal person with the "proven" treatment regimen for Thal that has worked on soo many other Thals who are leading a normal, productive and succesful life.
-
:agree ,Totally with Bostonian _04.
ZAINI.
-
Although science of Hemoglobin is not perfect; i.e. a HB of 6.6 could actually be anywhere from 6.3 to 6.9 (variantion of + or - 0.3) is possible. There could be so many factors involved at the time of test, like patient hydration level, any infections, etc.
Kabir_Love; that does not change a think for you and I agree with Bostonian that this level of Hg is not good for your child growth. Although you will not see a significant level of growth retardation at this age for your child as it is a very slow and gradual process (hard to see or feel at this time).
Regards
-
My question, as always is can Dr Mathur produce any thal major patients who have been on his treatment long term, and who are able to maintain a stable hemoglobin level without transfusions? Can he document his claims in any way? I do not want to discount homeopathy as a possible method for raising hemoglobin levels but can we see some documented evidence to back up these claims?
-
PLEASE READ MY NEW POST I STARTED FOR THAL. TREATMENT FOR SOME ANSWER I NEED TO KNOW
MY SON HB LEVEL NOW 14-7 = 7.6 NOW AND INCREASING
-
Can he document his claims in any way? I do not want to discount homeopathy as a possible method for raising hemoglobin levels but can we see some documented evidence to back up these claims?
I didnt see anything in the post that said homeopathy. It seemed to me that this was some sort of laying of hands.
Kabir was talking abour energy.
But what do I know :dunno
-
Dr Mathur is giving her son a treatment called Rodex. The new doctor is doing the laying of hands.
Ashish, have you heard anything about this doctor or his treatment in India? I have seen a couple news articles about him and his claims to be able to cure cancer and he apparently has droves of patients.
His contact details are
Cell Number: 91-9811007677
Dr. AM Mathur
House Number: 1265
Sector 17C
Gurgaon-122001
India
-
No haven't heard of him.
But there are a lot homeopath's who claim to cure a lot of ailments. None of them have solid proof.
Ayurveda on the other hand I am totally convinced. There are quite a few drugs we use at home for various ailments that are non toxic and really of no side effects. But of course none for thalassemia :( yet
So dont just give up on those quacks yet :)
If you want I can call Dr. Mathur up and find out whats up. Let me know
Ashish
-
Ashish,
We would love to hear more info about Dr Mathur. If you can contact him it would be great.
-
Thanks Vazirani,
Your insight in this matter will be very helpful, I am sure you have the knowledge and experience to dig deep and ask technical questions about Dr. Mathur's work.
Regards.
-
Yes please Vazirani, that will be deeply appreciated. Thanks
Manal
-
HI Andy,
Maybe I can shed some light on this matter, since my son too has started his treatment. To start with this doctor has no medical degree to his credit. He was awarded a PHD on experience basis. His father was a well known homeopath. In 1972 he created headlines when he tasted potassium cyanide and survived to tell the tale. Potassium cyanide is the main ingredient in his drug for cancer cure. To start with I was a little disappointed when I entered his clinic since there were no other patients other than us. But once we entered his room my doubts were put to rest. His room was filled with trophies and shields which were awarded to him for his success. Infact he was also awarded the MAN OF THE YEAR in 2002. The main ingredient in his drug rodex are extracts from the bone marrow which he said he gets from france and germany. Other than Rodex he has given Hassan supportive medicines. There are medicines for the liver, spleen, bones,fatigue, shortness of breath etc...I am very hopeful that this is going to work for hassan.
bye
maha
-
I wish you all the best Maha, I hope your child's health improves.
Do you know where he acquires the bone marrow ingredients - are they from animal marrow?
Thanks Maha - I hope your son's health improves in leaps and bounds.
Sharmin
-
If you want I can call Dr. Mathur up and find out whats up. Let me know
Ashish
Hi Ashish,
I was hoping that someone might say that. We will all be very grateful to you if you can really find out how his medicine works. As we know that there are many Thal. Intermedias who get misdiagnosed as Thal. Major and it is likely that Dr. Mathur's medicine are HbF inducers which make the misled patients think that they have been cured of Thal. Major by oral medicine!
regards.
-
bone marrow material are of human only he buy it from germany and france where i think are some society which keep the donors bone marrow for such uses. its human bone marrow only but what exactly it is.. he wont tell us as its his formula and it might be a secret aswell
though i had met with many patient of dr. mathur who took blood trans. for some years. on these patient his formula donst yeild much sucess or it might be a more long process..
-
Hi Sharmin
Thankyou for your well wishes. I hope its human bone marrow,coz it never struck me he would use animal marrow. Homeo medicines are extracted from anything and everything from honey bees to herbs, from metals to animal brains.Other than Rodex all other medicines given to Hassan are prescription medicines.I just hope and pray that this medicine works.
-
I pray for your children - whatever method helps - I hope that they remain healthy and happy! That's a wish from one parent to all of you other parents. :hugfriend :hugfriend
Love Sharmin
-
Ashish,
We would love to hear more info about Dr Mathur. If you can contact him it would be great.
Sorry for the delay, I am currently working on a project that takes all my time.
I spok to Dr. Mathur. and he is claiming to give the same drug rodex. Prefered time frame for 'cure' is one year.
You have to send all the resports by courier and then take the thal to him for checkup.
Any more questions?
-
Vazirani,
Since you are busy in your project, your response is much appreciated. However, can you find out what is the success rate, any real life examples of patients cured etc.
Take your time and good luck.
-
My question, as always is can Dr Mathur produce any thal major patients who have been on his treatment long term, and who are able to maintain a stable hemoglobin level without transfusions? Can he document his claims in any way? I do not want to discount homeopathy as a possible method for raising hemoglobin levels but can we see some documented evidence to back up these claims?
hi yes mathur has now 3 other patient on his medican for 2 year that had not done blood change till yet and they dont require it also....
-
hi everyone.
now its been almost 1 year my son on this rodex and now he seems ok much beter than before and growth its almost near to a normal baby of 1.6 year. from the starting till today no BT ever.. and in first 4 months was very diffcult for us as per his condition not that well but now pretty much ok and hb is about 7.5 -7.. not gone much up but will do gradually if everything goes like this.
regs
micky