Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: joyce on January 30, 2011, 01:53:57 PM
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Hola...
I'm soo very happy today as my son's Hb raised to 13.8 compare to last 2 months his Hb is at 10.2.
Just feel want to share it here.
:biggrin :biggrin :biggrin :biggrin :biggrin :biggrin
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That's great news, Joyce! :biggrin
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I am so happy for you Joyce!
Sharmin
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:hugfriend :hugfriend :hugfriend
thnx andy n sharmin!
:hugfriend :hugfriend :hugfriend
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Greatttttttttttttttttttttttttttttt.
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This is indeed wonderful news. You are writing about your older son right?
maha
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A good news indeed :hugfriend
He is thal minor?
Zaini.
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Thnx again all!
yes maha it's about my 1st son. actly according to the elecrophs report translated by andy he's mybe thal intermedia.
fortunately until know he never been transfused yet. im soo grateful. i thought his Hb will never rised again after it goes down to 10.2 last 2 months back. To share, i met a parent of a thalasemic. he said he's daughter also a thal major but instead of transfusng his daughter he find a solutions his own. he tried a spirulina+honey+morinda citrifolia and ganoderma extract in lifquid form and gve it to his daughter. after a month he said the hb is raised to 9 from 6 before. so i gave it a try to both of my son. hoply its work for them. i'll take whatever it takes to cure my children.
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spirulina+honey+morinda citrifolia
Any links. Having English as my second language I have no idea what this is? (Except the honey ofcourse)
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@dori morinda citrifolia is more commonly known as noni, you get both spirulina and noni in almost all health stores. Actually I found everything Joyce mentioned in one bottle but sadly it also had ferrum (iron).
maha
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@maha,what is it call in india.
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Hi sah
It is actually the Indian mulberry. Even ayurvedic stores stack them as noni, super noni....
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Is it available in Delhi?
Anybody knows?
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Hi Joyce
Are you mixing these ingredients yourself or buying it as a tonic as such.
@dip1973 I have seen both spirulina and noni in GNC stores and ganoderma extract should be available in gano excel.
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Hi maha and all..
Dori- i duno what was it call in english but i think sprulna is a well known supplement so do the ganoderma extract (red mushroom).
maha- everything was mixing in a bottle in liquid form. maybe we are talking about the same bottle if you said you also found a bottle with the same ingredients there. it is available in sureco. im not sure with the ferum but im sure there is. it was not stated in the bottle.
and just to share, my youngest's Hb (thal major) is still at 10.2 after 6 weeks doing the tx. :biggrin :biggrin
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Great news Joyce!!!
I plan on trying all of these in capsule form except for the honey, which I use in my green tea already. I'm ordering from Bodybuilding.com. It's where i get my other supplements because the prices are best. The prices below are U.S dollars.
Michael's Reishi & Elderberry, 90 Veggie Capsules In Stock $18.75
NOW Hawaiian Noni, 450mg/90 Vcaps In Stock $10.35
NOW Spirulina, 180 Tablets In Stock $7.99
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Hi bobby!
I have ordered some supplements through Puritans but to my dismay our local govt seize it all saying that it is illegal to get mediactions and supplements outside our country. so i opt to supplements around my place. :wink.
are you thalasemia major? i don't know if it is work with others but it seem working on both of my sons ( very promising results on my intermedia son-never been transfused yet). but spirulina contain ferum so it is up to an individual to try.
wish you the best bobby!
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that's brilliant!
i hope his Hb remians likes this!
and you believe the supplement you mentioned above is the reason?
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Love and prayer..
I loved to say so but the truth is im also not sure. along with the suplmnt, i tried homeopathy treatment as well. it's been a while know since i first started the treament on my children. maybe it's a taboo or to some it's maybe just a luck but from where i get the homeopathy treatment, there are numbers of patients that already stabilize thier hb up to 10. fully cure i can't say but to maintain thier hb up to 10-yes. how do they do it, i also dont know.
i also gve my children goatmilk as it is known to be the best after the mother's (what we believe in here). it's a 'must' milk that i gve them 1x daily to sustained thier blood. and i have to say that i do believe this as many of the parents here do the same to thier kids. im just sharing.. 1 way how sabahan keep up thier hb level.. :wink
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Joyce,
i'm a strong believer in herbal medicines and natural cures. Goats milk is something other's have mentioned before too. normally people don't have it because of it's taste but if it's good for your health you should have it regardless.
when ever you get a chance please list down all that you are doing for your children, it's shown great results!
best wishes!!!
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Hi Joyce,
Thank you for the well wishes.
I am a non-transfusing Thal intermedia. My hgb is usually around 8.5 or 9. So I'm hoping these supplements can get me to a 10 or even 11. In October my Dr. took me off Exjade because my iron was under 800 It started at 2200 and and dropped quickly on Exjade. The Dr. doesn't seem to concerned about it going up from my diet. I get it checked again in April.
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Do you think this is something I can give to my 17 month old? If so, how would i prepare?
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Thnx again all!
spirulina+honey+morinda citrifolia and ganoderma extract in lifquid form
Hi joyce, Great News BTW, Congrats,
May i know where to get this you mentioned, just that i will be in KK from 21st till 24th February 2011, might as well get it there since i'm there later.
Thanks
Later
L
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@joyce
I only googled the ingredients and found one that has all, and it was sold from malaysia, so probably you are giving the same thing I saw. I can understand looking after two little ones could leave you with not much time, but whenever you do find some, could you list all the ingredients including the measure of each one
thank you and take care
maha
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Spirulina and Noni are available at Puritan too,but i couldn't find Ganoderma extract :( .
Zaini.
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Is Reishi as same as Ganoderma?
Zaini.
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Hi Zaini
Yes reishi mushroom is the same as ganoderma. I was actually writing about this bottle http://www.tradekey.com/selloffer_view/id/146843.htm
But this bottle also mentions ferrum amongst other ingredients and is pretty expensive
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Dear all.. sory for late reply. im quite busy at schol recently. there are too many schol project has to be done furthermore our headmaster is soooo demanding. :(
maha- what is the name writen there? if it is 'MADULINA' then yes we are talking about the same bottle. and again yes- it is made from Malaysia. the problem is there is no specific measurement stated. thats why i never knew how much does it contained iron. t is very simple packaging with only ingredients, preparation and nutritional info-carbo,sugar,protien,fat, was found there. so i dont know how to provide you the measurement. i just gv my children 3x daily -1 teaspoon each time.
Al- I've sent you the detail. do check your mail.okay.. :wink
Carisma-I don't know what to say coz it is not proven clinically that it is rising Hb or have some benefit to thallasemia but it's seem working to my intermedia son.
Zaini- all ingredients already in a bottle . Im sory, but i think maybe if you bought it from Puritn nd from where i bought it, it maybe contained different ingredients as the'MADULINA' i bought here is the original extract from honey, live spirulina and live red mushroom- it is only RINGGIT MALAYSIA-MYR RM66.
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Can't we buy all four of these separately,Puritan is pretty reasonable,
http://www.puritan.com/noni-239/noni-400-mg-006055?NewPage=1
http://www.puritan.com/spirulina-514/spirulina-500-mg-003283?NewPage=1
Reishi is a bit expensive though.
Zaini.
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Hi Zaini
Madulina is also available online.http://secretproduct.net/index.php?main_page=product_info&cPath=16&products_id=37&zenid=c87482c421582dc1fbea3d0016d49c57
and its more reasonable than buying the ingredients separately, considering they haven't mentioned the quantity of each ingredient mixed.
maha
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Hi zaini and maha
try to look here.http://www.sureco.com.my/madulina.html
this is the exact product i gve to my Joey and Jovy.
it's cost wisely and it is pure honey and live spiruliina.
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This is so interesting and worth trying, does any body know a site that sell this bottle but written in English language
manal
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Hi this is that webpage put through google translate. Hope it helps. It seems very exciting. Zahra
Malay to English translation
Official Website Sureco
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Spirulina fresh from Malaysia with honey, noni extract
and red mushroom
* Helps to restore energy supplies and
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200ml
West Malaysia RM 62.00
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this is the contact info from that site
Alamat Syarikat
Hubungi Kami
Sure Return Corporation (M) Sdn. Bhd.
(475749-W / AJL 931308)
No. 6A, Jalan Laman Intan, Bandar Baru 36000 Teluk Intan,
Perak Darul Ridzuan
Tel: 05-6251187/88/89 Faks: 05-6236042
www.surecoblog.blogspot.com
Kilang Sureco
13&13A, Jalan Kancil Satu
Taman Industri Kancil
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Hi zahra.. what a great effort!! i really hope it works to all our kids too.
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I'm back... :wink
Dear all- being sooo happy with Joey's hb, we started to ignored the food he takes everyday.
i just gve him everything a child asks for. chocolates, cakes, sweets, etc!. then suddenly i noticed somthing very common -pallor! when we checked his Hb yesterday, to my shocked it dropped to 8. drasticly dropped from 13 to 8 just in a month! Gosh what a shocking result and a great lesson for us the parents!
know i have to work hard to raised his Hb back! pray for us..
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Joyce, yes this is a lesson. Thals need to avoid empty calories. Try to make everything in the diet count nutritionally. Sugary treats should be kept to a minimum. It's difficult and sometimes exceptions need to be made, but the habit should be to emphasize both nutrition and good taste.
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Joyce, i hope his hb gets raised quickly!
the best part is you know what was done wrong and have planned to correct it!
best of luck, and waiting for good news from you!!!!
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Thank you Zahra for your effort :hugfriend
Actually i discussed this herbs with the hematologist and when i told her about the presence of iron, she told me that sometimes the formation of blood by some drugs needs the presence of iron like the EPO
Anyway she didn't mind that i can try it for a month and therefore i ordered the bottle and i am waiting for it now and will update you about it after we use it. Hope it can be of any benefit
manal
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Can we get it in India? is there any way? Please let me know
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Is someone of you going to Antayla/
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POAR,
Actually I ordered it online since february,but until now I didn't receive it though company emailed me saying that they have shipped it and It seemed that It was lost I really don't know but I am so frustrated :mad :mad
So this is the way I went through, hope you have more luck
Manal
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Thanks Manal for the reply.
Actually we have mailed them too but didnt get any reply, seems they dont ship in India. I am very keen to use that. Please let me know if anybody from India able to get that.
With Best Regards.
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Dear Joyce,
In wat proportions you mixed all these and how many times you give the medicine to your child. Do you give him medicine before he haves his food or after having his food or just after rising from bed . Do you take any precautions??
Thankyou for sharing your knowledge
Regards,
Ajay Harwani
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@ zaini
hi!
do u know what we say to "spirulina+honey+morinda citrifolia " in Pakistan. and how we people can get it here. did u try to get it? is there any website which sells it online????
:-\
waiting for reply..:)
thanks
laiba
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@joyce
thats great... :cheer
congratss :congrats
laiba
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Laiba
I ordered from the site that is mentioned in this thread and unfortunalty it didn't reach me till now, this was many months ago :(...
So it is better to try from other source
Manal
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thanks manal... :smiley
laiba
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hello everyone. my name is shama from mysore, Karnataka.my son Rishaad is a thal major.he is 9 years old and he is on blood transfusions since he was 3 months old. past one year his usage of blood was more and his spleen also enlarged. he was advised to undergo splenectomy. I was in search of a good pediatric surgeon. they my colleague suggested this homeopath Mr Khadar .I desperately wanted to meet him. I took my son to him.he
discussed a lot and gave him medicines for 1.5 month. now he is on those medicines from past one month and his Hb has risen to 9.6 and his spleen also reduced in size. I am happy that I can maintain his hb and save his spleen.
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hi
shama thats great news congratzzzzz :hugfriend which medicine you r giving to your son?? what is the name of that medicine?
best wishes
laiba
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thanks Laiba, he is on homeopathy medicine.
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I am happy to hear that. Do you got more details for us?
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Joyce,
I'm from Sabah. Where do you buy those spirulina+honey+morinda citrifolia in Sabah? Do you buy the goat milk in Desa or the kampung ones? Trying to raise my own hb because of some "unknown" infection.
Thanks.
Regards,
Gracia
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Sory all.. its been a while since my last visit here. im quite busy with working and lot of stuff to be done here and there. Busy at school, busy with children, etc.. Just to share, im nOw a member of thallasemia org in my state. we are going to have Thallasemia day for district level on this coming Sept, 17th. For that, im sooo very sory to those mail I've didn't reply.
Back to my first son's condition- Im regreted to say that the "MADULINA" is actually not working with him. he's nw getting his monthly transfusion. actually this MADULINA doesn't raised his HB at all but we've being fooled by the result of the clininc( the machine they use to checked the hb is not accurate). The result of my son's hb from this private clinic always indicate that his hb maintained to 10 and above but when looking at his physical condition, he's getting pallor each day. so we took him to the nearest govt hosp and the dr confirmed that my son hve to be transfused asap because his low hb-6.
Im so hurt to see both of my children laying in the very same bed at the very same ward.
MY APOLOGIZE TO ALL OF THE THAL PATIENTS AND FRIENDS FOR SPREADING FALSE HOPE OF THE MADULINA. I ALSO DIDN'T KNOW, MY INTENTION IS JUST TO SHARE AND HELP EACH OTHER. IM VERY SORRY.
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Dear Joyce,
In pursuit for higher Hb, sometimes we are also looking for alternative food/supplements that can raise the hb. Anyway, thank you for sharing with us.
For me, I don't trust results from the clinics 100%, even among private labs. Needless, I have been "fooled" before I am not a thal because the lab result from one of the private lab in KK for hb electroporesis is normal, thus resulting in the iron overload because the doctors just prescribed me more and more iron during my pregnancy without checking on my ferritin level. If you are going to take any lab test, only take in government hospitals(those you go for check-up as I think different hospitals give different readings too), and Gribbles(if you need to take from private lab). I think the reading from Gribbles are quite near from my observation from countless blood test I took before but not all doctors from private clinics use Gribbles as their panel. Gribbles lab test are more expensive, I think but accuracy is more important. Moreover their consultant haematologist is the only one from the private lab sitting as the external reviewers af Clinical Practice Guidelines - Management of Transfusion Dependant Thalassemia. You can download these from the internet, if you want to read :)
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thnks gwftan..
Ya- Gribbles is the only private clinic i trust in town. nyway, what type of thal are u gwftan, carrier i think?
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Hi Joyce,
Gwftan is my initials and tan is my surname. I used it all the time to login websites. I just posted a long questions after questions to Andy whether I'm actually HbH. Dr. Lily recently upgraded me to HbH which caused the lab tech who's poking my veins had a suprised look when he was reading my RBC request and asked about HbH. I was under impression there's no HbH under follow up even alpha thal is rare because majority are beta thals.
I think Dr. Lily had ordered many DNA test to find out what's my thal. I've alpha 3.7 deletion, SEA deletion(I didn't know about that, the junior doctor showed me the Hb Electrophoresis recently) and my daughter was tested for Codon 59 deletion(I think must be a mutation, not deletion). Dr. Lily refused to take my daughter's Codon 59 deletion, ordered another DNA test again. I think she only believes if she sees the report with her eyes.
Ya, Gribbles are the best. Even the doctors from thal clinic ordered test from them, of course I had to pay... if they want the result urgently. HQE took ages to come out with the result at times.
Gracia