Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: Andy Battaglia on October 08, 2007, 03:10:25 PM
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I have had this site brought to my attention a couple times in the past years and wondered if anyone knows anything about it or has tried Carao.
http://www.anemiaanswer.com/
What You Must Know About Carao Fruit:
1. Carao Fruit is not a drug
In spite of its health-giving properties, carao fruit (pronounced ca-rah-oh) is not a medicine, but rather a pure, whole, natural food that naturally builds the blood for long-lasting benefits.
2.Carao fruit generally works fast
Most people feel results (greater energy) in a week or even less. Anemia that is not produced by disease is usually either cleared up or measurably improved in 4 weeks. Difficult cases may take longer to show measurable results, but almost all carao users feel greater energy.
3.Carao fruit is low in iron (Details HERE).
This means it doesn't produce the unpleasant side effects of iron (constipation, indigestion).
4. Carao fruit is recognized as effective by most Costa Rican doctors.
Even though it's not "officially" recognized, most Costa Rican doctors recognize it or even recommend it. It is one of Central America's best kept natural health secrets.
5. Carao for anemia is supported by recent medical studies.
Dr. Luis Carmona, M.D., completed a Costa Rican study of carao for anemia in May, 2004. His conclusion: "By a mechanism that is not very clear...it helps correct anemia." (The study included a chemical analysis.) Also, in Dec., 2004 a distinguished medical journal published an article on the effectiveness of carao for anemia in laboratory animals
There is also an ongoing study by Dr. Attahiru I. Sokoto in Nigeria, a pediatrician who calls carao a "new dawn in the management of Sickle Cell Disease and Anaemia." CR Natural makes regular donations of carao to his hospital. To find out how you can help, email me.
6. Carao fruit therapy has no side effects
Carao is a natural food with no known undesirable side effects. It often produces a feeling of well-being. It is also often reported to improve appetite and promote weight gain in underweight children.
7. Carao fruit therapy can be combined with any drug treatment.
Since carao is a natural food, it can be taken concurrently with medications as long as sweet foods in small quantity are permitted. As a rule of thumb, if a person can handle 1.3 teaspoons daily of bee's honey, he or she can take the full dose (4 teaspoons daily) of carao. Carao is well-tolerated by diabetics.
8. The carao fruit product is guaranteed.
Details on the CR Natural website.
In response to my question I received the following reply from Lloyd Standish:
Hello Andy,
Yes, we have had several reports of use by thalassemics, all of them
positive, I believe. There is one case of a young lady here in Costa Rica
whose blood value (HGB) have gone to over 13, to the amazement of her
doctor. I have copies of her blood tests as well as copies of medical
papers which confirm she is thalassemic.
In sum, we guarantee the effectiveness of the carao fruit product for
thalassemia.
Best regards,
Lloyd Standish
website: http://www.AnemiaAnswer.com
use suggestions: http://www.AnemiaAnswer.com/brochure1.html
Tropical Health Foods (TM) carao may be ordered from:
https://www.crnatural.net/order.shtml.
The thalassemic in question may be a minor to have such a result, but if she did have success this product may be worth an investigation.
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Andy, do you have any pictures for this fruit??
Manal
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Shown below are the tree, flower and fruit of Carao (cassia grandis) tree.
(http://i71.photobucket.com/albums/i126/comicsetc/Reference%20pics/bukut-cassia-grandis-tree.jpg)
(http://i71.photobucket.com/albums/i126/comicsetc/Reference%20pics/caraoflower.jpg)
(http://i71.photobucket.com/albums/i126/comicsetc/Reference%20pics/caraofruit.jpg)
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Umm,I am not sure i recognize this fruit or what's it's name in urdu!! any ideas Sajid? If this fruit works that great i'd like to use it myself first to check the result.
ZAINI.
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Is this fruit likely to alleviate any of the anemia assoc with thal major?
I wouldn't mind trying it myself either.
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If anyone tries this let me know the results, please! If it were me, I would try it, but I am a little bit apprehensive to give to our daughter because she is still so young.
Thanks!
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Wow, the tree looks so pretty!! At first I thought it was the Cherry Blossom of Japan, but the closeup flower turned out to be something else.
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Is this fruit only in Costa Rica, anybody knows from where we can get???
Andy, is the extract of this fruit has been made in capsules or not yet?
Manal
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Hey, I found the link for the syrup that could be ordered online
https://www.crnatural.net/order.shtml
i read its chemical analysis and seems very interesting, it has too phytic acid (IP6)
http://www.anemiaanswer.com/chemical_analysis.htm
Manal
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hey
i had order this today and will see i hope its good
regs
micky
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YA ORDERD 4 BOTTLES , SO LETS SEE, THOUGH EVEN RODEX IS WORKING WELL AND HB IS STABILIZED BUT AS ITS HOMEOPATHIC SO I CAN ADD THIS SYRUP WITH IT WITHOUT ANY SIDE EFFECTS I HOPE ...
MICKY
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Best wishes Micky!
:goodluck
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Hi Manal
I Hope doing great you and your son Ahmad.
Manal did you checked with your Hemo, if we can give this Carao syrup with hydrea. As you know my daughter Priya is also on hydrea.
So pls. let me know if you have checked.
Mr. Andy did you know if we can use Hydrea and Carao syrup together.
Take Care
Harminder
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Yes, Carao can be used with other hemoglobin inducing products.
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Hi Harminder
We are fine, thank you.
I have now stopped the hydra as we will start a new treatment this week, so i will not be able to give Ahmad two new things at one time.
Manal
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Hi Manal,
I am very excited for you - I hope that this new treatment is successful for your son.
I am considering the Carao for my son.
Wish u well!
Sharmin
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Thank you Sharmin :hugfriend
On the Carao's site, there was written that it has been expermented in Nigeria by a doctor called Dr. Sokoto and his patients were mainly sickle cell children. I emailed him asking if it can raise the Hb in thal kids and he answered me saying that it can elevate the Hb in thalassemics.
So i will be too considering it but not now because of the new treatment and the good thing is that it is natural
Take care
Manal
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started today carao syrup. smell bad though...... but mix it with honey and giving to my son,, though its been now 3 days only but my wife says she is feeling some change well lets see for the best future as the site says differenc can be seen in 18 days well lets see.
regs
micky
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Good luck Micky
Manal
:goodluck :goodluck
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hi Andy
I have gone through the site you have mentioned does this syrup really help :rolleyes
rupali
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well , for this syrup cant feel any noticable change yet.
been more than a week lets wait for 18 days. as they says it will show some results.. smell very bad though but taste is ok not that bad. my son dost like it anyway so have to mix it with juices.
lets see.
regs
micky
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Hi
When I read the testimonials of people taking carao, most were iron deficient and carao helped to increase their ferratin levels . I wonder if it aids in iron absorbtion although very low in iron itself. In any case my shipment has arrived. I had decided I would not force Hassan if he refused to take it. But Hassan just loved it.So I have decided to give him for a month.
P.S- Carao has a very strong unpleseant ordour. Truthfully it stinks. Tastes a lot better mixed with milk though.
Regards
MAHA
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:goodluck Maha,
Do keep us informed,
ZAINI.
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i am excited about carao- especially for christian who is sickle cell.
i have been on the site of Dr Sokoto and have ordered my batch. can't wait for it to arrive. if it helps sickle cell like they claim i might be able to prolong transfusions to 5-6 week intervals, hence more chelating of iron and less absorbtion of iron from transfusions.
cheers vic
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:thumbsup BEST OF LUCK MAHA & VIC.
I have also order CARAO, and waiting for the shipment. I hope it will work for my daughter who is thal intermediate.
Take Care
Dimple
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I have received my pqt. Today and I will start giving to Priya with in 2-3 days because she is on antibiotics (throat infection) write now and I don’t want to mix them.
I hope (by HIS blessing) it will have positive effect on Priya.
Regards
Dimple
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GOOD LUCK Dimple :hugfriend
I wish priya health and joy.
ZAINI.
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Best wishes for Priya!
Keep us posted on the progress
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Hello Dimple/ kabir_love/maha/Vic/Sharmin
Are you guys still continuing carao. What are your observations so far, is it helping?
Pls advise.
Rgds
Puja
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I am Lloyd Standish, author of http://AnemiaAnswer.com. I have noticed the discussion here about carao fruit for thalassemia. I would be glad to answer any questions that I can about carao fruit for anemia/thalassemia. I would of course avoid any promotion of my carao fruit product on this forum.
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Lloyd,
Welcome to the group. I hope everyone will have some questions and I'll get it started. Some of our members have tried carao and said that the smell makes it hard to take. Can you give some suggestions on what can be done to cover the smell?
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Hello Andy,
If mixed in milk, the smell is not noticeable and it is considered by many to be delicious, similar to chocolate milk. Those who cannot take cow/goat milk can try mixing it in rice or soy milk. I have also heard of it being taken in coffee. Another person suggested mixing in blackstrap molasses to mask the smell. I was sent an interesting recipe: http://anemiaanswer.com/Judys_carao_recipe.htm (http://anemiaanswer.com/Judys_carao_recipe.htm).
However, many people DO like the flavor plain, and don't mind the smell. It takes some getting-used-to.
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carao we gave to my son for a good period of time i didnt notice any extra change. just we was active which may be because of other reasons or of carao .. im not really sure.
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I have been giving carao to Hassan for quite some time . I am in the fourth bottle and have already received four more. I can`t see any improvement in hb so far, but for the first time in months he is wearing clothes his age. His height and weight has improved. But I also started the wheatgrass supershots also at the same time. So I am not changing the winning combination.
maha
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Hi Maha,
I am glad that your child has grown, possibly as a result of this supplement. Where did you order the Carao from? Thanks:)
Sharmin
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Hi Sharmin,
It can be ordered at https://www.crnatural.net/order.shtml . The founder of the company, Lloyd Standish, is a member of our group now. He is always happy to answer any questions anyone may have. I think that our members are some of the first thal majors to try this product. As with other natural products that we have seen, the results in raising hemoglobin may vary from none to small increases, but again I would advise going by what you observe because there are many facets to good health and what a product does is not always easily measured by just one factor. The taste or smell is an obstacle to its use but there are some tips on the website on how to make it more palatable.
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Hi
I tried this product. I bought 2 bottles from lloyd standish about say 2 years ago. All i can say is that it tastes yuck. My daughters would not take it, even in milk. Maybe when they are a little older and more tolerant to horrible things we will give it another try.
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Hi Naiem,,
Lloyd Standish does find it somewhat frustrating because many patients do like the taste. He also reminded me that there is a money back guarantee if you're not happy with the product (minus the shipping costs).
I am also a bit frustrated by the fact that no one has found a way to give carao a good trial. I think it may have benefits for minors as well as majors and am hoping someone can give it a fair trial of at least six months. We know with wheatgrass that it takes a year to see what the full results are and it would be great if someone could faithfully use carao for an extended period so we can get some reports on its effects. Lloyd mentioned to me that it is being used by a Nigerian doctor who is using it with sickle cell patients and has done so for several years. They don't mind the taste, so there may be some cultural differences in what foods they are used to there. I hope Lloyd can give us a bit more information on the Nigerain patients and what the observations have been, especially in terms of frequency of sickling crises.
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Hi Andy
Hassan has been on carao for the past 6 months and is still on it. On Lloyd`s site a thal minor had reported an increase in hb after being on the product for 3 months, so for a thal major it would definitely take more time. My son has got used to its taste although at times I have to run after him. When things are really difficult I give it to him using a medicine spoon. When it comes to taste it tastes a lot better than the aloe vera juice I give him, its just the revolting smell thats the problem.
Maha
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This is Lloyd, the producer of the carao fruit, writing from Costa Rica.
I have reviewed my records and I find only 3 reports from thalassemics. I will review the results below:
1) Cinthya Aguero, Costa Rica (thalassemia minor, permission to quote and to give contact info granted) She told me her hemoglobin hovered around 5 (!) before taking carao. She has been taking carao fruit for several years. She now maintains hemoglobin above 13. She says she can go for at least 2 months without taking it before her symptoms begin to return. You can email Cinthya at cinthyaaguero at yahoo.es (replace the 'at' with '@'). She is a very nice young woman who would like to see other thalassemics benefited. She does quite well with English, I believe.
2) Satish, London (thalassemia minor, permission to quote granted) wrote to me 7/2007: "Hope that you are fine.I have already started feeling better and am feeling energetic (after so many years of fatigue and body pain) after receiving the first bottle ... from you last week." Satish London
Satish wrote to me as follows 4/27/2008:
"Dear Lloyd
Hope that you are doing very well.
I am a recent customer of yours having purchased three or four bottles of Carao mid of last year.My blood levels have again gone down due to my thalassaemia. Hence,I wish to continue with ... carao..."
3) A grandmother of a child with thalassemia major, India, writes (I have not obtained permission to quote so I will not give the name. I will write for permission.):
"Dear Mr.Lloyd Standish:
Its a long time that I have written a mail to you. We have received all fruit juice bottles as promised by
you. I wish to state that my grandson has been regularly taking carao fruit juice. Three months back
his Hb level was above 7 and now it has come to 4.5. We started giving him blood transfusions. But my
daughter and son-in-law are of the opinion, after my grandson started taking carao fruit juice, his general health, appetite etc. improved considerably. The child also is very active. Our people are happy that the juice has been helping the child very much. Right now they are giving 2.5 ml. Can they increase the dosage. I shall be happy if you can give a reply to my mail."
I replied that the child, 2.5 years old, can be given at least 2 teaspoons (10 ml) per day. We hope that the larger dose will give more improvement.
These are all the cases I have related to thalassemia. (I am not omitting any cases of negative results.)
In addition to the donations to the clinic in Nigeria, I currently send regular donations of carao fruit to a social worker in India, Rudradevananda. Although his focus is sickle cell anemia, he told me that he has given it to a thal major patient. I will send information of the results when I receive them. Rudradevandanda can also be contacted directly at rudradevananda at gmail.com.
[bgcolor=#FFFF00]UPDATE JAN. 1, 2009: NOTE THAT THIS POST WAS MADE IN MAY, 2008, AND THE OFFER MENTIONED BELOW HAS EXPIRED.[/bgcolor]
I realize that much more information on use for thalassemia should be obtained. Therefore, I will donate a 10 week supply (4 bottles) to the first 5 members of this forum who contact me (http://AnemiaAnswer.com/contact.htm (http://AnemiaAnswer.com/contact.htm)). Recipients will be expected to pay shipping ($9.94 for each 2 bottle pack to USA/Canada), and should agree to post results, positive or negative, to this forum. When you email me, mention this forum. (If the patient is a child 5 or under, 2 bottles will provide the 10 week supply.)
Please note that carao fruit has a long history of successful and completely safe use for anemia, including years of clinical use (primarily with children) at the Nigerian clinic. Hence, there is no risk involved, and it is my hope that this donation will lead to much benefit for thalassemics.
Feel free to ask me any questions here on the forum.
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Lloyd,
Thank you for this generous offer. I hope that members will take full advantage of this opportunity.
I want to add that everything I have ever read about Lloyd shows him to be an honest person who is trying to help people with various anemias. We will never know how this product applies to thalassemia unless our members are willing to give it a fair (at least 6 months regular use) try.
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I may be wrong, but I think that a 10 weeks' use of carao fruit will be long enough to show clear results in blood tests for cases of thalassemia minor. Thalassemia major may require much more time, and the only benefit may be increased energy level.
After years of experience with carao fruit for all types of anemia, it appears that in addition to increasing blood levels in most cases, it somehow also increases the efficiency of oxygen transport of the blood, allowing people to function better and feel better even with extremely low hemoglobin levels. This is most noticeable when carao is taken by women who have had severe episodes of menstrual-related bleeding. (Of course, when bleeding is severe the cause of the bleeding must be addressed.)
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After years of experience with carao fruit for all types of anemia, it appears that in addition to increasing blood levels in most cases, it somehow also increases the efficiency of oxygen transport of the blood, allowing people to function better and feel better even with extremely low hemoglobin levels. This is most noticeable when carao is taken by women who have had severe episodes of menstrual-related bleeding. (Of course, when bleeding is severe the cause of the bleeding must be addressed.)
[/quote]
So this where Hassan gets all the energy from :biggrin. It is extremely difficult for me to keep him quiet even for a little while. 24/7 my home looks as if its just hit by a cyclone. Giving 2tsp of carao has become a routine and now I have more reason to continue.
Thankyou for making this product available
Maha
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I want to remind people about the offer Lloyd Standish has made in his post. He emailed me that no one has taken him up on his offer so far. I really think this is a good deal and am surprised people aren't trying it. Lloyd has informed me that this offer is good only through June 9, so anyone wanting carao for just the cost of shipping, reply soon.
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UPDATE from Lloyd:
There is one participant signed up, leaving 4 positions. Those interested can either contact me through http://anemiaanswer.com/contact.htm, or by commenting here.
I want to stress that carao fruit is a completely safe, nutritious food and can be used by all age groups and (in desired) in conjunction with any medicine. It is also extremely low in iron.
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i have 1.5 bottles at the moment. does it have an expiry? if not i will be happy to be part of the offer.
cheers vic.
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Hello Vic,
I'm not quite sure what you are asking, but if you refer to the expiration of the offer of free carao, don't worry about that. Consider yourself included. Please click the "IM" link next to my posts to contact me to arrange payment of the shipping on 4 bottles. (Postage only, no handling fee.)
The offer expires today, but I am going to extend it another week (Until June 17) .:)
So come on forum members, please participate is this informal study! The Carao fruit is a completely natural and harmless food and has been recognized as such for centuries in Central America. It is used by both infants and the very old with no side effects (not surprising this is a fruit, not a drug). What is new here is using it for thalassemia.
In a previous post I said that those interested could contact me via my website contact page. I wish to change that. Those interested MUST post on this forum, because membership in the forum and ability to post will be required to report results.
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Lloyd,
Thanks for the extension of this truly remarkable offer.
I want to remind people that I am 100% in support of Lloyd in his attempt to document the effects of carao on thalassemics. Please give it a chance and I really would like to hear from people about how they get past the smell, which has caused some patients to stop. Come one now. Is that smell really worse than anything else thals go through, like jabbing themselves with needles daily? Please give this a chance. Based on the testimonials of others who have used it for various anemias, I suspect that those who do stick with it will see some positive changes in their health.
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Hi Lloyd,
Can you tell me what would be the postage for Pakistan,i'd love to try carao with my daughter,but the ratio between our currency and dollar is increasing day by day.
ZAINI.
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It's not the smell i am worried about,as Zainab took wheat grass super shots very easily which most patients usually find difficult to swallow.but i'll have to convert the charges into my own currency.
ZAINI.
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Lloyd,
Thanks for this generous offer. I would like to try this product on my one year old kid, pls count me in.
--mudit
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Hello Zaini,
My website's order form page allows you to choose the currency for showing prices. I used it to get the shipping price in Pakistan Rupees. I chose "economy shipping", which would result in one bottle shipped "priority" airmail, and 3 shipped "non-priority airmail." I think the non-priority shipping will delay delivery only slightly if at all. The results are below (currency exchange rate date 6/06/08, which is the most recent provided by the International Monetary Fund):
1 bottle priority airmail: 652 Rupees
3 bottles non-priority airmail: 1166 Rupees
Total Shipping: 1818
This is postage only - no handling fee. (If this amount is a hardship for you, contact me by IM.)
On the taste, I know a couple of people on this forum have said bad things about the taste, but believe me a LOT of people (especially children) love the taste, and will ask for more! My suggestion is to first give it in milk or something similar to milk (which will completely mask the smell).
To Mudt: you're counted in. At this moment there is still room for one more participant. But if I get several more requests in the next few days, I'll expand the offer to include them.
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I am very encouraged by the recent response! I hope all the participants get great results! The only problem I see is that 5 participants is very few to allow firm conclusions to be drawn on carao fruit for thalassemia.
Therefore, I have decided to raise the limit from 5 participants to 15! So, don't hesitate to sign up for your free delicious carao fruit! :)
Again, the rules:
1) Participants must be members of this forum, and signup must be done by a post to this forum
2) Recipients receive 4 bottles at no cost (10 weeks supply for an adult, 20 weeks supply for a child under 6)
3) Recipients pay airmail postage only (no handling fee)
4) Results to be posted on this forum
In addition, I would like to announce that I will donate carao tree seeds to anyone who will plant them (tropics or subtropics only, with subtropics to be considered experimental). I only ask for postage (USD $2 is enough for quite a lot of seeds.) I will be posting information on www.carao.org (site still to be developed) on how to extract and concentrate the carao nectar without cooking and with a relatively low level of technology, suitable for poor regions of the world.
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Lloyd, that is really a generous offer, you are really so kind and helpful, thank you and i am confirming my participation.
Lloyd, of course as you know i did the order for my son as one of the participants. i too would like to participate as being a minor with low HB and nothing seems to help. But i would like to participate if only offers exceed participants as of course priority goes first to major and intermedia patients. So i will check with you before expiry date
Again thanks for everything :)
manal
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This is great. The more the merrier. It would be great to compare the results. Hassan probably leads the group since now it is almost seven months since he started carao.
regards
maha
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Maja, in fairness to you, you can sign up as a participant and receive the 4 free bottles. Your long-term observations of the effect on your son are an important and useful part of the knowledge base.
Manal, thank you for your encouragement. You can consider yourself included. I consider information on carao for thalassemia minor to be just as important as for the more severe types, and in fact you may find much more dramatic results on your blood values. I will contact you by email about the shipping.
Mudit, I got your personal message, but I need an email address to arrange for the shipping payment.
Likewise, Zaini and Vic, I need your email addresses. Please contact me via personal message on this forum (see icon to the left of this post), or through the website at http://anemiaanswer.com.
Do we have any members from Africa? I am focusing mostly on Africa and India for planting of carao trees.
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Thanks Lloyd,
You are ery helpful,plz count me in.
ZAINI.
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Lloyd, Egypt is in Africa.... i will see if i can use my sisters' garden as a place for plantation or not , i 'll get back to you :wink
manal
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Hello Lloyd,
As I stated in my email to you, I am very much interested in participating in this informal study using the carao for my daughter. I've read the testimonials and I am hoping that it will be beneficial for her as well. Thank you very much for the offer! :biggrin
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Hello Lloyd,
I am a Thal Intermedia. I have been functioning with a Hb around 7-8 since I was little. Lately I have been tired and weak. I will be seeing my Hematologist soon, so this could be a good time to try Carao. I'd like to be included.
Bobby
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Bobby, that's fine, just send me a private message with your email address, to send you the donation order link, for paying postage. I hope the carao fruit works well for you!
bbatiste22 already has her donation order link.
I think we have about 7 participants now. I'll post a list soon.
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Thankyou Lloyd for your generous offer. If you haven`t had your 15 participants as yet I would like to add my son Hassan to your list :biggrin
thanks again
maha
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1. manal (son)
2. manal (mother)
3. vic
4. mudit
5. zaini
5. bbatiste22
6. bobby
7. maha
(there is room for 8 more participants)
All participants who do not have a donation order link to pay shipping, please be sure to contact by via personal message of this forum.
If you have already contacted me and I have not sent you the donation order link, I have overlooked you; please email me again!
If you have received a donation order link from me and have not been able to use it, just email me for help.
If you have received your donation order link and have changed your mind about participating, please let know so I can remove your name from the list.
- Lloyd
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I would be interested - and my 9 1/2 year old son is healthy overall - but I just want to consult with Andy.
Andy, with everything else that is going on - is it best for us to postpone being involved in this - or even beginning another supplement until our appointment in Oakland?
Thanks,
Sharmin
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Sharmin,
If you can be sure you will be able to keep on taking carao daily during the trip, I don't think it's any problem to start. But if there may be gaps, you might want to wait until after the trip, so you can give Lloyd a more accurate review of its effects. You might also ask Dr Vichinsky if he has had any observations of patients using natural Hb inducers like wheatgrass and resveratrol.
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Hi everyone,
I have been reading the post about carao fruit and I have decided to try it with Olivia.Is this something she can stay on long term, she is 4 yrs old now, how long can she take it for? For life?
Kathleen
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Hello Kathleen,
Carao can certainly be taken long-term. It is a natural food with no known side effects. According to a young thal minor woman in Costa Rica, the effects are long lasting: use can be interrupted for 2-3 months at a time without losing benefits. She has interrupted use of carao because she sometimes runs out and she is, I think, shy about asking me for more (her supply is donated).
To participate in this informal study, Kathleen, please send me your email address. You should find a button to the left of this post for that.
I would very much like to accumulate more information on long term dosage for thalassemia and sickle cell anemia. After 2 or 3 months' use, I think the amount taken can be cut back to half or less of the recommended amount for acute anemia. That would allow a bottle to last about 5 weeks in the case of an adult, and 10 weeks in the case of a child under 6. (This is only a theory, based on what Dr. Sokoto and I have seen in a few thalassemia patients and many sickle cell patients.) For sickle cell anemia, the benefits (cessation of crisis and other symptoms) is supposed to last about 6 months after carao is no longer taken.
If anyone would like to help me send donated carao fruit to Sokoto State Specialist Hospital in Nigeria, I accept donations to help pay shipping at this page:http://webedit.voluntary-simplicity.org/donate.htm. Contact information for Dr. Attahiru Sokoto, pediatrician, can be found on that page.
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I know that all of you that are going to start carao soon will keep track of your hb, But there is something else I would like you to check out. Most thals have problem with weight gain, mashallah my son has no such problem. His weight of 13kg is good for his height of 89cm. He is a little above the 50th percentile.He is almost 26 months old now. He was diagnosed exactly 13 months back and at that time his weight and height was 8.3 kg and 71cm respectively.
When you are giving a hundred and twenty different things to your child you cannot attribute the improvement to one thing. So members lets do a study to find if carao can improve weight and height in thal children.
maha
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It's true that carao is for the most part is being added to a bunch of other things taken for thalassemia. That's part of the reason it is an "informal study." However, if most everyone can report benefits, I think it will show there is definitely a positive effect, and perhaps be motivation for more carefully-controlled studies.
Maha, did you notice an improvement in appetite and weight gain after your son started the carao almost 7 months ago? Or did you also introduce other therapies about the same time he started using the carao?
Does anyone know of a sickle cell support forum where a similar "informal study"of carao might be done?
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Hi Lloyd
Hassan at 3 months weighed 7kg, he was quite a big baby then. When he was 9 months he weighed 8.1kg and like I said earlier at 13 months he was 8.3kg. He was not gaining weight inspite of having an ok appetite. I started carao in november and at that time he was 10.3kg. I had also started various therapies around the same time. For the past two months his appetite has been low( I have started something else ) but inspite of this he has been gaining weight.
maha
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Hi LLoyd,
I would love to try the carao with Olivia I will send you our e-mail and I will let everyone how she is doing and if I feel there is any change in her. I am very sensitive to Olivia's behavior, color, growth everything about her I am usually on the money so I feel I will be able to tell the difference if there is one after she begins the carao.
Thanks Kathleen
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Hi all:
I am a participant in Llyod's caroa informal trials.
I woke up this morning shaky and dizzy and really feeling out of sorts, well, God didn't forget me, 20 minutes ago my son went out side and at least one packet of my tiral caroa bottles had arrived. Just knowing that lifted my spirits. It got here in just over a week. OF course I already took my first dose. I took it straight because after smelling it, I figured if I extended the amount to drink by dilution I would have a hard time taking it. It surely smells foul. We call it Stinktoe in the Caribbean, so that will give you an indication of the smell.
Anyways, it was not that hard to swallow, but it did taste and sting my throat as if it contains alcohol. I read the bottle after I swallowed and it said 100% pure caroa. Llyod, I'm taking your word that it has no alcohol in it cause that would drop my counts like a bomb, in a major hurry.
I'm the type that has to take half of any medication or less, I have fast reactions both good and bad, so If this thing works, I will know pretty quickly. I am also taking into account the placebo effect, cause i am so excited about finally getting some 'natural' relief. Anyway, I am keeping positive. Right now my counts are hovering around 8, dipped below that for the first time in my life recently.
I am looking forward to reporting that caroa works, I know nothing works the same way for everyone, so I will let you guys know if it works what my diet is and anything else I took at the same time as well as my blood type, as I do believe blood type plays a major part in treatment. I also think whether the Beta or Alpha chain is affected makes a major difference to how thals are affected, and therefore also to any treatment modality.
Stay Strong.
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In my 6 years of providing carao to folks all over the world, you're the first person who thinks carao tastes like it might have alcohol. (Note the spelling, "carao," not "caroa.") It is pronounced ka-rah-oh
Since I frequently get reports about how good it tastes, I'm pretty sure that at least one of the participants in this study will say they love (not just like) the taste. As I've mentioned before, it does not taste anything like it smells. For it to taste delicious, it is usually mixed in milk or milk substitute. In milk it tastes very much like cocoa. (By the way, cocoa, which most people like, tastes pretty awful if you eat straight dry cocoa powder. And pure bees' honey taken off the spoon will often cause a stinging sensation in your throat, too. Do you see my point? Actually, straight carao tastes a lot better than straight cocoa.)
Taken straight, carao tastes strong. In fact, we recommend it never be given straight to infants because of the very strong taste. (For infants it should always be mixed in some sort of milk.)
To those who are waiting for your carao to arrive: Take my word for it, mixed in milk it is delicious to not just a few, but most people. Also, after it is mixed in any beverage, there will be NO smell. If you are giving it to a child, please don't tell the child first that you are going to give him something that tastes awful. For the record, Dr. Attahiru Sokoto, Nigerian pediatrician, resports that ALL his child patients like it in milk.
To those who can't take milk, you can try mixing in rice milk, or soy milk. For those who really want to wipe out the chocolaty taste, it can be mixed in blackstrap molasses, or in coffee.
Healinglights, I hope you are sensitive to its effects the way you are to medications. I think you will start to feel better in a couple of weeks.
The informal study is about to close, so any last-minute participants should post their interest here very soon.
Regards,
Lloyd
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Hi
I too received the first two bottles yesterday. Thank you Lloyd.
It is true the smell and the taste are really difficult, but my boy is brave and when he knew that i will be taking it with him sometime later he was encourged. He just close his nose and quickly after taking it he drinks a cold glass of water. The taste remains a little bit but keeps drinking any other thing to change the taste. I will try to offer it to himin milk as you advised
I give him two spoons ( 5 ml each ). Lloyd, i made a full CBC, HPLC, ferritin and bilirubin tests before starting in order to able to compare the effect later on when i finish the four bottles.
Hoping for positive results to all of us
manal
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Hey LLoyd thanks for the good wishes.
Don't get me wrong, it doesn't taste bad as such, hope I did not give that impression to anyone who maybe interested in trying it. Its just the smell. Perhaps that stinging after taste like alcohol is probably because I took it straight. I tend not to want to prolong things I think might be unpleasant, and I did wash it down afterwards with coconut milk smoothee.
It was just my way to swallow, and then follow. I don't know if I will continue to take it that way now I know it won't taste as bad as it smells.
It's surprisingly sweet, and nothing at all like the smell, I should have mentioned that. And i don't advice anyone else to try it the way i did. So in summary for anyone thinking of trying it, the bark is worse than the bite, namely the smell is nothing like the taste, so try not to be put off by the smell.
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Dear Lloyd Standish!
I just heard about your offer that ended on 17th June! Frankly speaking, i was quite busy with work that i wasn't be able to be online so often. But one thing for sure, i am all for this group.
Would it be possible that i get Carao also together with rest of the group members? My son is 20 months old and he is HBE Beta Thalassemia (Internedia)
I am currently in Malaysia
Sure hope that you can count me in for the free TRIAL!
Thanks
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HI all
I just received the carao syrup... I am so excited :biggrin to get olivia started....just to make sure....she gets 2 tsp a day? is that right? she is 4 yrs old and weighs 35 lbs.....
we have her next appointment in 2 weeks I will let everyone know if there is any change....
Thanks Kathleen
Thanks again LLoyd
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Hi Lloyd Standish!
Thanks for accepting my request for Carao supplies. My daughter is 3.5 years and she is Beta Thalassemia major. Currently she is on Hydrauxyurea and Exjade. I would like to try this to see if there is any further benefits from Carao.
Thank you in advance.
Om
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While reading through the site, I read that Carao is also used for Iron deficiency. If it is used for solving Iron Deficiency, won't it put more iron on the thal's body?
From:-
http://anemiaanswer.com/questions-and-answers.htm#other%20uses
GOOD FOR WHAT TYPE OF ANEMIA?
We have seen it to be very effective against so-called "iron deficiency"
Lloyd, could you clear up my confusion?
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Hello,
Narendra: Carao fruit, like all natural fruits, is extremely low in iron compared to an iron supplement. Our carao product was measured at 14 ppm (parts per million) by 2 laboratory analyses.
That amounts to about 0.4 milligrams total iron in 4 teaspoons (the suggested daily adult dose).
According to all indications, carao fruit has the ability to help normalize the body's use of iron - quite a different strategy from modern medicine's approach to iron deficiency anemia, which is to provide the body with with enormous, unnatural quantities of iron. It is not surprising to me that iron supplementation often causes serious side effects.
I have never heard that carao fruit will increase iron or hemoglobin levels above normal levels. It is fine for non-anemic people to take carao fruit.
Om: You have your special link to pay postage only on 4 bottles. I hope you daughter has great results.
Kathleen: I'm very sorry I did not notice your question earlier. It is fine to give your daughter 2 teaspoons per day.
Al: I sent you your special link to pay postage only on 4 bottles on July 2. I see you have not yet used it. Did you receive it OK?
Best regards to all,
Lloyd
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Hello again,
I have been trying to get Cinhya Aguero from Costa Rica to post here on her years of experience with carao (she is thalassemic). She is a sweet young lady who is happy to help others by sharing her experience. However, I think English is difficult for her.
She sent me a message yesterday for the forum. (I know she really should post it here directly.) I decided not to translate it... there must be Spanish speakers here. Maybe enough to open a discussion in Spanish? Then I am quite sure she would post directly.
From Cinhya Aguero, Sunday, July 6:
Gracias a Dios y al carao tengo una vida normal ya que por medio de el señor: Standish lo e podido conseguir, yo les aseguro que es un producto muy bueno y que ayuda a sentir menos dolor en mi caso, compruebelo por ustedes mismos y veran los resultados en sus vidas cotidianas. se despide una talasemica agradecida con Dios por haber criado el carao y con el señor, Standish por consegirme tan alientadora esperanza de vida normal.
- Cinthya. (cinthyaaguero at yahoo dot es)
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Lloyd - am I too late to enlist my son in this study?
Sharmin
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Hello Sharmin,
I was just about to close this informal study (there may be others in the future), but yes, I would be glad for you to participate. The idea is to get a good body of information on carao for thalassemia, and I am very happy that so many people have signed up. I will post a revised list of participants soon.
Just send me a private message with your email address, please, so I can make up a special link for you to pay postage only on 4 bottles.
Regards,
Lloyd
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Dear Mr Lloyd,
I did receive your link earlier, but currently i'm not using any credit card, i'm trying to get my brother to pay for me using Paypal. Sure hope that everything is in order soon.
Sure hope that the offer still stands
Thank You Soo MUCH!
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Very curious to know the message, any translationn :-\
manal
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Al: Don't worry about being delayed in paying the shipping - that won't disqualify you from participating. If you will send me your shipping address I will go ahead and ship out 2 bottles while you work out paying the shipping. I'll email you further on this.
Manal: I did not translate Cinthya's email since I now believe she cannot read/write in English, and I did not want to encourage readers to email her in English. However, it would be great if we had enough Spanish speakers to maintain a thread on this in Spanish.
Having explained that it is probably not cool to email her in English, I'll make a translation:
"Thanks to God and carao I have a normal life, since through Mr. Standish I have been able to obtain it. I assure you it is a very good product, and has helped me have less pain - try it and you will see the results in your daily lives. [following is the hard part to translate] Goodbye from a thalassemic who is grateful to God for having made carao and to Mr. Standish for having provided me with the uplifting expectation of a normal life."
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Thanks Lioyd so much and dyou really deserve it but what kind of thal she has? Is she transfusion dependant?
manal
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Hello Manal,
She is thal menor (is that right in English?) She has never had a transfusion, but she said her hemoglobin hovered around 5-6 before she started using carao a few years ago. You can read about her case here: http://www.anemiaanswer.com/testimonials/cinthia.htm (http://www.anemiaanswer.com/testimonials/cinthia.htm)
I just realized I misspelled her name in the name of that page!
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Thanks Mr. Lloyd!
I'll get back to you from your email later.
Thank You
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CARAO FOR THALASSEMIA STUDY UPDATE
Participants who paid shipping or made special arrangement
1. Manal (son)
2. Manal (mother)
3. Maha
4. Olivia Mary (Kathleen)
5. Karen James
6. Narendra
7. Mudit (just paid shipping today)
8. Om
9. Al (2 bottles shipped, still owes postage)
The following requested to be included in the study but did not pay shipping:
1. Vic
2. Zaini
3. Bobby
4. Sharmin
The special payment links I sent to pay postage only on 4 bottles of carao fruit expire after 30 days. This will soon happen soon (within a week) for Vic, Zaini, and Bobby. If someone has a good reason to ask for more time (a new link), they can do that.
Just so everyone here knows, priority airmail shipping for 4 bottles (2600 grams) from Costa Rica to the US (as an example) is USD $19.88. This is postage only, and is far cheaper than sending anything of this size overseas from the US, Canada, or Europe.
To our participants, I wish you the very best of results. The offer of 4 free bottles for this study to new participants is officially closed today. (Those who already have special payment links can still use them.)
Regards,
Lloyd
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hi every1.
i m giving carao to my son now about 7 months already. and my stock over. well i cant say anything cauz i didnt see anything better as i m giving my son proper bt... so he looks fine and healthy.
well i hope to hear good from all of you.
regs
micky
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Hi Micky,
Glad to hear your son is fine and healthy. Do you mean he is symptomless? Could you explain what "bt" mean?
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Hi Lloyd,
"BT" is an abbreviation for "Blood Transfusion" used among the members of this site :biggrin
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Oh my, if the carao did not help your son avoid or at least reduce the need for blood transfusion, then it was not effective at all for him. I'm very sorry. This is the first time I have heard of complete non-effectiveness for thalassemia. I think your experience should be included in the body of information we are trying to accumulate. Could you tell me what the daily dose was during the 7 months? Also, what class of thalassemia?
Thanks for for explaining "bt."
Regards,
Lloyd
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Hi Lloyd,
I am sorry i was away traveling and before going i didn't have enough time to arrange payments,as i don't use a credit card so i had to ask my dad to do so.
Can i make a payment now? Is my link active or expired?
ZAINI.
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It expired after 30 days. I'll make another and send it to you by email.
Regards,
Lloyd
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Thanks a lot Lloyd, i really appreciate your efforts.
ZAINI.
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hi
lloyd.... i cant say carao didnt help my son in any case. as my son is on BT now only 4 is done.. before that for 1.5 years i didnt went for my son blood transfusion and he was on hemopathic medican and for 1 year he maintiain hb in 7.0 to 6.5... after that finally we started bt... about 4.5 months back.
so it might be true that CARAO is helping. but i gave much more of other substiute to my son aswell.... well its good we had started study here on our board .. im looking for goods results and i think it might be carao helping my son.
so lets see.. as my carao stock will be over in 4-5 months. then lets see what goes here.
best of luck.. my son is thal-Beta-major
reg
micky
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Hello Micky (and to all carao study participants):
My hope is that carao can allow thal major patients to avoid blood transfusion and live symptomless or nearly symptomless with a stable hemoglobin level, which however in the case of thal major I expect will be very low compared to normal. (At least, this is the experience of one case that was reported to me from India.)
For thal minor, I am hoping/expecting to see dramatic improvement in hemoglobin levels, perhaps to normal levels (as with the case in Costa Rica).
Of course, this is an "informal" study with no strict controls. It will provide "anecdotal" results. Still,[bgcolor=#fff500] it would be a great help if the participants would avoid trying new therapies during the time carao is taken.[/bgcolor] That way, even though other treatments are also being given, we can still draw some conclusions about carao being effective, or not.
I propose that we use this thread for pre-study discussion and speculation on results, and use another thread called "Carao Study Results" only to post actual results and discussion on those results.
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hi every one.
know as im giving my child only IP6 and carao. and nothing else. so this month i saw something my son had fever and hb fell to 7.6 and we did the bt. after 22 nd days we again went for bt cauz last time hb was very low and to maitain the level we assumend it must be now in line of 8. but when hb test were done it was 10.2. so it didnt fell much over the time. we gave him 200ml blood which usually give 4 point increase generally. so it must be 11.5 max. but somthing did help in stoping the fall of hb instantly here
regs
micky
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Hi Micky,
That's a wonderful news :clap
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Hi Micky,
Great news! I hope your son will not need any more blood transfusions.
Regards,
Lloyd
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Hi,
I got first bottle of carao syrup today,thanks to Lloyd,
Andy,
Do you think i should stop wheatgrass and IP6 my daughter is already taking? and what would be the dose of carao for her?
ZAINI.
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no. wheatgrass and ip6 .. you should not stop there working is different.
carao i give 1 teaspoon in mornign and 1 at evening. from starting
regs
micky
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Zaini, I agree with kabir_love, don't stop what your daughter is already taking if it is giving good results.
2 teaspoons/day (1 tsp = 5ml) is a good dose for ages about 2-4 (see suggested dosage below).
The table below is a estimated dosage guide which can be modified to suit individual cases. The suggestion that children under 6 months get the benefit of carao through their mother's milk is simply to avoid giving a such a young baby ANY other food except mother's milk. However, I believe that Dr. Attahiru Sokoto in Nigeria gives carao to newborns for sickle cell disease.
For children under 4 yrs, carao should always be given with milk or formula, since the strong taste is likely to be a turnoff for the very young. Children 4 and up who like the taste of carao can try it plain.
ages 0-6 months: nursing mother should take carao at 4 tsp/day
ages 6 months-1 year: 1 tsp
ages 2-4: 2 tsp
ages 3-5: 2-3 tsp
ages 6+ 4 tsp
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All these things should be used together. The cumulative value of all the supplements is what is important. If Zainab does better than before it will show if the carao is working.
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Thanks Micky,Lloyd and Andy,
For your prompt replies,i am starting carao today and i really wish that it would work for my daughter.In how many days should i expect any change?
ZAINI.
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Dear Lloyd,
I really appreciate that you have made the shipment of the 2 bottles, but unfortunately, I still have not receive the shipment! Could you give me the link again in order for me to make the necessary payment as soon as i receive the Bottles! Mind me but i have never make any payment overseas, so i am still getting into it!
Sorry for any inconvinience caused.
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Lloyd, I too have not received the shipment yet and it will be close to month and half now! I am just worried if the shipment is lost somewhere, pls let me know if there is anyway to track it.
regards,
mudit
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Al, your airmail shipment of 2 bottles was made July 15. That was 5 weeks and one day ago. Shipment to some countries takes up to 7 weeks. I don't know why. As I said, I paid about $11 postage for your 2 bottle shipment. I sent only 2 bottles since you did not pay the postage, as the other recipients of the carao donations did. Since you are apparently unwilling to pay postage until the product arrives, let's wait until until your package arrives. I'll send you a new payment link then.
Mudit, your shipment was made Friday, July 11. That was 5 weeks and 5 days ago. Most our shipments to India have been arriving in under 4 weeks, I think, so your delivery seems delayed. I hope it arrives soon. There is no tracking information available, since mail tracking from Costa Rica is not yet computerized (and so takes too long). Again, since some shipments are delayed up to about 7 weeks, we should not consider it lost yet.
The Indian social worker Rudradevananda, who is setting up a sickle cell clinic for the very poor (in Orissa, I think) would probably be able to lend you a bottle or 2, which you could replace when your shipments (2 packages of 2 bottle each) arrive. If you want to contact him, his email is rudradevananda at gmail.com (spam prevention: replace 'at' with '@' and remove spaces.) He is having very good results with carao for sickle cell.
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Please would those who have received their carao shipment post here, indicating when the carao fruit therapy was begun, and the age of the patient, and the dosage being used?
Regards,
Lloyd
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Hi Lloyd,
My son is almost 6 years and i give him two teaspoons ( 5 ml each ) everyday. I need sometime to remember exactly when we started to give you the accurate date. Now we almost finished the second bottle.
When i start the third bottle, i will increase the dose to two table spoons (10 ml each ) everyday.
As for me, i didn't start yet as i only received one bottle and i don't want to interrupt this informal study if i finish it and haven't received the rest.
I will get back to you when i remember the exact date, though i remember i posted it in one of the posts :huh
manal
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Manal,
I think your dosage plan for your son is fine. However I believe that 1 tablespoon = 3 teaspoons = 15ml.
Regards,
Lloyd
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Hi,
My daughter started carao on August 19th,she is 7 and a half years old,and she is taking 2 teaspoons a day.
ZAINI.
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Hi Zaini,
Although you daughter should get good benefit from 2 teaspoons/day, I would recommend 3-4/day for her. It can be taken 3 times/day if desired, to reduce the amount taken at once. I will try to get Dr. Sokoto from Nigeria to post his recommendations here. As a pediatrician, his experience is mostly with children.
Regards,
Lloyd
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I want to remind everyone in Lloyd's trial that they need to keep records of the dosage used and the Hb levels before and after starting carao. Also, please make note of any changes in overall health that you see during the trial, and please, once you start, do follow through and don't skip giving it.
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Hi,
I'll try to convince her to take three spoons a day,but the smell and the taste is a big problem,i tried mixing it in her milo chocolate milk,but she detected the taste and smell,i've recieved one bottle ,i hope i'll get others soon.it's been only 10-11 days she started carao,tomorrow is her transfusion,i don't think we'll see any change in her hb that early,will we?
Zaini.
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Zaini,
try to give her Carao in "Candia flavoured milk " and choose the flovour " strawberry " i hope she will fail to find its ( carao syrup's ) smell .... ..but be aware to pr-added sugar in candia flavoured milk ...
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Hi Umair,
Actually the smell and taste of carao is very very strong,so it's almost impossible not to detect it,unless you you develop a taste for it,like christine's daughter did,anyways zainab is taking it anyhow,after a bit of fussing,which is a part of being a kid :biggrin.I just hope she gets it's benefits.
She went for transfusion today and her pre transfusion hb was 9.4 .
Zaini.
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Zaini: Pre-transfusion HGB at 9.4? Isn't that high enough to not require transfusion? In Costa Rica doctors won't transfuse anybody with higher than about 7.0 HGB. Is it normal for her to be at 9.4 before transfusion? What were zainab's previous pre-transfusion levels? And yes, Zaini, it IS possible to see changes in blood levels in only 10-11 days, although it usually takes longer than that.
How high do you need to see her HGB in order to decide not to transfuse? Um, I guess you can tell I think it is better to avoid transfusions if possible. In fact, one of my hopes for this carao trial is that it will allow some participants to stop getting transfusions.
Mudit and Al, have your shipments arrived yet??
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Lloyd, my shipment is not arrived yet...not sure if I have given my phone details too while placing this order. Pls let me know if I can do anything to track my shipment.
regards..
mudit
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Hi Sis :
its nice to hear that, her pre-transfusion Hb is good .. Good Job Sis, it's the result of your good care behind her maintained Hb on good levels :thumbsup ...
i hope & wish that, it will increase in upcoming days.... Best of Luck ..
Take Care
Umair
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Mudit: there is no tracking information on these airmail shipments. Since tracking from Costa Rica is not computerized, we have found it to be too slow to be useful.
--
Lloyd
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Hi Lloyd,
Transfusion regimen vary from place to place. Like here at Jamila Sultana Foundation in Rawalpindi they try to keep the pre transf. HB above 10 all the time by giving less blood quicker to keep overall health good. In my case its after 10 days. They would transfuse even if my Hb is slightly above 11 instead of calling back again in a few days. The next transfusion however would be given later than usual. (eg 15 days instead of 10)
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Andy,
The goal is to have pretx hg levels between 9 and 10. They thought that below 9 was too low and can interfere with growth and cause the spleen and bone marrow to expand.
We did receive a lot of info - if there are any other questions you are welcome to ask while it is all fresh in my mind :biggrin
Sharmin
Hi Lloyd,
As you can see in Sharmin's post that Dr Vichinsky told her that pre transfusion hb should be in between 9 and 10,so it won 't effect bone marrow ,growth and spleen,so it's very normal for my daughter to get transfused at 9.4,even i remember that we even transfused her at 10 in the past.Although,since last few months her hb ahs hovered more between 9.2 and 9.6.
The duration between her transfusions is three weeks,even if this duration can increase and she can hold her hb for a little longer,like two or three months, it would be good.
How high do i need to see her hb for not transfusing? I guess if she can maintain her hb between 10-10.5,i won't transfuse her then.It's definitely better to avoid transfusions,less iron less problems,but if it effects her over all growth and health ,i would obviously opt for the transfusions.
I have increased her dose from two teaspoons to four teaspoons,divided in two doses,morning and evening,lets see what happens when the next transfusion comes.
Andy,
Am i right about the hb levels of 10-10.5 for not transfusing,do you think these levels are enough not to effect a child's health and growth?
Zaini.
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Of course I am not a doctor, but my personal opinion is that the acceptable subnormal HGB will vary among individuals. If the person is symptomless, with normal energy level, that in my opinion matters a lot.
I think carao fruit therapy may allow some thalassemics to become symptomless and to maintain stable blood counts without blood transfusions, but at lower than normal HGB levels (perhaps between 9 and 11). I am hoping that it will help some with thalassemia minor to attain normal blood counts as well.
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Zaini,
You are right, it is important to keep hg levels above 9 - that is why the guideline is to transfuse between 9 - 10. In the past, before the antibody issue, whenever my son would have a hg of 10 or above our doctor would suggest that we wait a week to transfuse. 9.4ish is the perfect pretranfusion hg.
It is a fine balance between hg levels, iron levels and chelation. A hg of 9 is important for the bones, growth and the spleen. If you can get away with fewer transfusions you have less iron and in turn lower requirement of chelating agents which means fewer side effects from chelation. If you can maintain a hg level of above 9 (with Carao) for a longer duration then you will have achieved all of these goals.
I think Zainab will do well in this trial - just keep her hg above 9. I hope to begin using Carao in the future - I just don't want to add anything new since we have just completed his treatment this summer. So far he looks good - he's holding his hg and things are returning to normal. No more puffy cheeks:)
Best of luck to everyone in this trial,
Sharmin
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The thinking with thalassemia intermedia has been changing in recent years, and it is becoming more accepted to keep the Hb high (above 9-10) so that normal growth and development occurs. In the past, intermedias were not transfused until they dropped to the 7-8 range. With advancements in chelation and blood safety, the dangers from transfusion are greatly reduced, so if it is shown that low Hb is inhibiting development, transfusions are now being recommended whereas in the past, the trade off of slower development over taking blood was the norm. Chelation compliance is the key if this strategy is to work. Supplementing chelation with iron removing antioxidants (IP6, green tea extract, and fermented papaya product which we will be learning much about in the near future) and boosting Hb with Hb inducers (wheatgrass, resveratrol, carao etc) should also be part of the treatment strategy.
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Llyod,
I still have not received it too. Sure hope that i can receive it soon coz need to join the rest in giving info whether it's working with my son.
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Hi Everyone,
I recieved other two bottles of carao yesterday,Thanks a lot Lloyd.
Yes,my goal is to keep my daughter's hb between 9 and 10,i don't want her growth or physical appearence to be effected in anyway,right now if a person who doesn't know about her thal,when looks at her can't detect a thing,i want to keep it that way.I am trying my best to be compliant with the chelation,her ferritin last checked was 1232,it's still a bit high,i am working to bring it down ,below 1000 will be good.
Best of luck to everyone.
Zaini.
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I think carao may be able to stabilize HGB above 9 in many thal intermediate patients. However, if blood transfusions are routinely given at HGB 9.5, or even 10+, this test might not allow us to know if/when blood levels have become stable and that bt is not necessary to maintain levels between 9 and 10.
Of course, I am not suggesting that anyone modify their treatment practices. I am only pointing out what may be the limitations of this informal study.
For thal minor, I am hoping to see HGB levels in the normal or near-normal range. Is there anyone in the carao study who is thal minor?
Glad your other bottles finally arrived, Zaini.
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The folks in Oakland would be proud of you Zaini :yes
Lloyd - I am a thal minor and I would be happy to participate in your trial.
Sharmin
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Sharmin, this carao trial is closed, but if you can find 2 or more other thal minors who will participate (agreeing to post results here, and paying postage), I'll donate the carao for a thal minor trial!
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Hi Lloyd,
I am a thal minor and iron defiecent too, but as i told you i didn't start taking it yet cause i don't have all the bottles.
An Update on my son:
I did a CBC before taking carao, the Hb was 6.5 and the Reticulocyte Count was 12.6%. After finishing two bottles till now in around 45 days, his Hb is still 6.5 but the reticulocyte count is 3.5%. Though the hematologist can not see anything significant about this but i am sooo happy because to my knowledge this means that there is less pressure from the bone marrow on the bones. By the way we never had this reading even at the time when my son was taking the hydrroxyurea.
manal
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Anyone else?
Sharmin
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ahem......ahem, the thing is i am not as courageous as my daughter, :rotfl even when i give her carao,i can't stand the smell,and the face my daughter makes after taking it :medicine :puke, i think i'll take time to find the courage :biggrin.although my hb always remains below normal.
Anyways i was only joking,it's just that right now it won't be possible for me to arrange the credit card again,it was a hassle last time also,Lloyd knows :).
Zaini.
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I am not trying to undermine or insult anyone here but would like to share my experiences with carao.
First of all, I would like to say that I myself used carao after my blood counts were low from agressive chemotherapy. I am therefore familiar on a personal basis. It has been 6 years and for the first time in my life, my hemoglobin counts have been low end normal. I carry the minor trait.
My Granddaughter(Thal Major) is two and has had it in her bottle for many months. Thankfully, she loves it and actually asks for it.
When I purchased it for her, I ordered it for my Mom (now 82), who was experiencing low hg levels. My Unlce has Stage 4 Lymphoma and the chemo has caused anemia. I was worried sick with whether they would be able to tolerate it because of the "smell." It did not bother either of them. In fact, my Mom likes it. Another close family member who recently went through chemo used a bottle to help keep her counts elevated and it worked and she too liked it.
Not sure wheter any of you make an issue out of the smell but if you don't, you may have more success. It does seem however, that children who strart it when they are a little older are the ones who find it distasteful.
I have so much faith in this produc that I wish there were a magic wand that would enable everyone to toelrate it. That is kind of silly because if there were a magic wand, I would use it to ward off all illness and disease, epecially thalassemia! SUre you get my point though.
Anyway... I would love to provide data on my G-Daughter's progress but I feel it would be better to leave it to her Mother who I know posts on here and is a huge advocate and great Mom.
At any rate and no matter what you each choose, you are all in my thoughts and prayers for great health and success.
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wow.....amazing.
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Welcome Thalma.
It is nice to read positive feedback about carao.
I'm certain that some of us here would appreciate your honesty and the sharing of your experiences.
We are always happy to welcome and read from new member ,'
I hope you continue to post because we all benefits from each other experiences,
Kathy
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Thanks Thalma, for sharing your experiences with us. I'm glad that your family has benefited from carao and that your granddaughter enjoys it:)
:ty
Sharmin
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:welcome :welcomewagon
WELCOME THALMA !... To the family , please dont hesitate to ask if anything you want to ask about .. i hope you will find this forum , very usefull and helping ..
its nice to see that a new member is sharing their experience that is encouraging to other members....
thanx for sharing your experience , it will boost the courage of others to start CARAO ( at least it boost my courage to start it :grin ) ... i m also planing to start CARAO , only waiting for green light from my Doctor ...
thanx God after that much about the bad smell and taste of CARAO there is a reply that encouraging me to start CARAO ..... thank you for sharing this Thalma ....
Best Regards
Take Care
umair
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Good to read positive feedback
:thumbsup
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Umair, this might not apply for your part of the world (?), but in western countries (North and South America and Europe) it is in my experience *never* wise to ask for a medical doctor's approval to use carao fruit. Almost no doctor will approve of anything he does not know about and which is not part of standard, orthodox treatment. Doctors generally know nothing about carao, NOR ARE THEY INTERESTED. If a doctor did "approve" of it, he would open himself to lawsuits.
If you use carao and get great results, and report those results to your doctor (I have witnessed this situation, via email, more times than I can remember), the most you can expect from your doctor is for him to say "Keep on doing what you're doing." He will NOT be motivated by your success to investigate carao and recommend it for other patients.
Carao is a natural fruit, and should be used with that attitude. It you ask for a doctor's approval to use it for anemia/thalassemia, you immediately change it from a food into an "unapproved new drug."
On the other hand, if carao is used as a food, your doctor will not object. You can show him the bottle and let him read the label. All you have to remember is to not tell him it is good for anemia!
Note that I use the words "he" and "him" in the broad, traditional English sense to refer to both men and women.
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let me add from muy own personal experience regarding any holistic or natural approach when it comes to a conventional doctor.
I mentioned in my previous post that I had aggressive chemotherapy. I went the conventional route BUT having always used many natural paths, as soon as I finished I went holistic. Still use conventional as well. I am of the mind that the best of both worlds work well for me.
Anyway..... I was having horrific problems and side effects from post chemo / surgical meds that were literally destroying me. I started investigating many natural remedies. When I approached my Oncologist, he told me that he was not able to condone any product that did not have clinical studies. So... I found that by rephrasing my question, I got the answer that I wanted. I asked him whether he had other patients who chose natural remedies and he said many. I then asked how they were doing and he knocked wood, gave me a smile and said " very well. Thank God."
It is also important to note that you should approach the doctor with facts. DO you homework and be prepared. Lloyd is right. Most know nothing about many of these natural remedies and some even hate them out right. I had one doctor tell me that he might as well sell cars if herbs worked! Well... duh! Most of modern medicine was derived from herbs used centuries ago.
In the case of Carao, it is low in iron and is a fruit, so basically how could they say no. It then comes to the point that you have to make your own edcuated decision. Hard but do-able. Pray and follow your gut!
Blessings,
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I am reading this post for the first time. What is this carao fruit? When i goggled about carao, I did not see any independant website talking about this fruit. the sites that talk about it always links back to anemiaanswer.com which is owned by Lloyd Standish. This fruit is not even mentioned in wikipedia. if you try searchign for any other fruit, wikipedia will always show up. I am sorry , I don't want to offend anybody but i am curious why no one else talks about this fruit.
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@ lloyd standish
hi lloyd i asked to my doctor abt carao ... my doctor was looking keen to know abut carao ,,,..... i hope you will get an order to me as wel realy soon ... i only want to b sure that carao has nothing that is not good for my medical condition .. thats why i wanted ask abt it to my doctor ... i will follow your advice about the procedure ... i qouted below :
Carao is a natural fruit, and should be used with that attitude. It you ask for a doctor's approval to use it for anemia/thalassemia, you immediately change it from a food into an "unapproved new drug."
On the other hand, if carao is used as a food, your doctor will not object. You can show him the bottle and let him read the label
hope to order carao to you soon ... plz keep some carao syrup's bottles saved in stock for me ... i will purchase to you soon... i hope, i will ... just give me time to find the way of payment ,bcoze i dont have debt or credit card like something ... i will manage it soon .... i m saying again keep some bottles reserved in stock for me hahahhah .. okiey i will purchase soon...
take care
umair
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Carao is not a drug. As Lloyd keeps stating, it is a fruit. You should not have to ask your doctor if it's OK to eat fruit.
The reason you don't hear about carao other than on their website is because it is not sold mass market. It is sold from one company and is a small time venture but we are getting good reports from people who use it regularly. I have heard about carao for years but this is the first we have had members trying it.
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i was modifying my last post when i suddenly got DC .. now i have edited that .. plz read that post o reply .. i wil discuss my father for the procedure to get carao .. i thin i will have to get help of my uncle buy carao to lloyd and then send to me , as i dont have any online bank account or plastic moneey like debt card and other... lloyd i will inform you soon abt the procedure .. thank you for being with me and answering me .. and for understanding my view.. thanx andy for teh reply it was early as i wasediting my view at the same time .. yo know that i have a little prob to share my poiint of view and my thoughts to you and other thanx for understanding and explaining my thoughts and views , everytime ... thank you buddy ,thank you for giving words to my thoughts ..
take care
umair
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Hi Umair (PS I ediited this post after I realized that you are in Pakistan!)
Online payment from Pakistan if you do not have a credit or a debit card is difficult, since you cannot back a PayPal account with a bank account in Pakistan.
One thing you can look into is getting an "Internet prepaid card." This is an option in Nigeria, another country from which you cannot open a PayPal account.
Or, if your uncle is to pay for you and he is not in your country, keep in mind that we can ship to a country that is completely different from the billing address. You can email me off-forum if you have any questions on this (lloyd at anemiaanswer.com).
I'd like to repeat to everyone who reads this now (and in the distant future) that I am eager to donate carao tree seeds for planting in tropical regions. I promise to publish full information on our solar-energy-based low temperature evaporation system.
Bostonian_04, sorry there is still no Wikipedia entry for carao fruit. I will try to write one soon!
-- Lloyd
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Hi lloyd:
today ,i will talk to my dad ... i will discuss all the methods of payment to my dad .. so lets see wat will come out to that discussion ... i will inform you abt the decission later ...
take care
umair
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It is very nice of all of you to welcome me so warmly.
Curious to know whether any of you take special precautions regarding iron intake and if so, any particular time? Near transfusion? Always?
I welcome any informatin that you may have or that you practice.
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Hi Umair (PS I ediited this post after I realized that you are in Pakistan!)
Online payment from Pakistan if you do not have a credit or a debit card is difficult, since you cannot back a PayPal account with a bank account in Pakistan.
One thing you can look into is getting an "Internet prepaid card." This is an option in Nigeria, another country from which you cannot open a PayPal account.
@ Lloyd Standish : Internet prepaid card
will you plz tell me more abt this option ... i think it will be easier one ... please tell me the procedure of this option , how it work's ? and how can i send money to you via using this option ??.. ... waiting for your reply ...
umair
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Umair, I'll answer your question via private message. -- Lloyd
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Sure Lloyd ,
i m wating for your PM, abt the procedure ...
umair
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Andy,
Do you think that my son is ready to participate in this trial? Or even to begin taking the product?
Sharmin
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Sharmin,
I wouldn't hesitate with carao. We have to remember it is a fruit and not a med. It's safe and very nutritious.
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Hi,
Just to let everyone know,my daughter has finished her first bottle of carao syrup,her transfusion is on 20th september,let's see if we see any changes in her hb level.
Zaini.
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BEST OF LUCK sis :
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:pray praying for you
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All the best for our little Zainab!
Love,
Sharmin
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Thanks a lot dears :hugfriend
Zaini.
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Zaini, we are anxious to know if there was any noticeable improvement in your daughter's blood values, shown by the pre-transfusion blood test on Sept. 20. Please let us know.
--
Lloyd
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Hello,
I am sorry Lloyd,i was just so caught up with Sajid,that i forgot to post here,my daughter's hb after three weeks was 10.2,which is a little improvement,as since last few months her hb reading was not coming above 9.6,it kept coming like 9.2,9.4 or 9.6,but not more then that.
She was transfused,because her doctor said that such little changes doesn't matter,they come and go (he doesn't know about carao ofcourse) ,My husband asked doctor to schedule her next appointment for 4 weeks,he said ok it's your responsibility.
And may be it's better to wait for the next time,as we know there are lot of factors which can effect hb reading,so i didn't want to jump the gun either and get falsely excited.As her school timings are also shortened while Ramadan,so she was getting more rest,and less hot weather.
Let's see what her hb comes in her next transfusion which is on 18 october,her school timings will also be back to regular after Ramadan,so i think we'll get the real picture.
Zaini.
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Hi Zaini,
If your daughter's average hb over the last several weeks before carao was average 9.4, and after 3 weeks on carao it is now 10.2, that sounds very good to me!
However, it seems to me that if she finished one bottle by Sept. 20, she must have started taking it somewhat before her previous transfusion, is that right?
As you say, her future results will be more tell-tale.
IMPORTANT NOTE TO EVERYONE PARTICIPATING IN THIS STUDY
I need to see the following information from all participants:
1. Confirmation of delivery of the carao
2. Date when carao is begun
3. Dose given
4. Age and diagnosis of patient
5. Average hb before carao was begun (the last several blood test results, if available)
6. Results of all hb tests done during or soon after the period of use of carao. Of course, the date of the test(s) must be included.
7. Whether or not any other treatments were started during the period that carao was given.
8. Any extra observations, such as observations on energy level and effects on the overall health of the patient.
In addition, this information needs to be posted by the participant directly to this forum. It is not acceptable to send the information to me to post it for you.
My suggestion is that each participant make a post to this forum using the above numbered list as a guide. When new information is available, the participant can add it to his or her post, since members can edit their own posts.
I expect at least 3/4 of our participants to post their results here. If we do not get this level of cooperation, I'm afraid I will not be able to sponsor any more of these studies.
A forum was already started called "results of the carao study." I suggest that that forum, rather than this one, be used to record results only (no discussion on the results). I'll make a post there, repeating these guidelines. Andy, if you think this is a good idea, you might consider moving the posts that do not contain carao study results off the "results" forum.
Lloyd Standish
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Hi Lloyd,
Yes you are right,my daughter started carao on 19th August,started with the dose of 2 spoons a day,she had a transfusion on 30th August,her pre transfusion hb was 9.6,after this transfusion i doubled her dose to 4 spoons a day,then after three weeks her pre transfusion hb was 10.2.
She is 7 and a half years old,and though she was diagnosed as thal major in her hb electrophoresis report at age of three,but after a year of her diagnosis another doctor told me that she must be thal intermedia beacause she didn't need any transfusions till the age of three,neither she had any health poblems till then.
As i told you earlier that since last few months her hb was hovering between 9 to 9.6,i'll have to get the copies of blood work from the hospital for accurate dates and readings,which i definitely will.
Her pre transfusion hb on 29th august was 9.6,and on 19th september,it was 10.2.
She is already taking IP6 and Wheat grass super shots.
The difference which i felt was in her last pre transfusion week she generally becomes a bit pale,this was not the case this time,as her hb was a bit increased.
Zaini.
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Hi Lloyd,
1- i received all the bottles except two are still remaining.
2- Started the carao in June 2008
3- First two bottles i gave 5ml twice a day then starting third bottle the dose is 10ml twice a day
4- my son 6 years and thal intermedia , never transfused
5- Average HB is 6.2 to 6.5
6- On September Hb is 6.5 but there was a significant decrease in the reyticulete count, it became 3.5%, we never had it that low. On October 1 will be the second CBC
7- No treatment given except mineralsm and multivitamin, L-carnitine and folicacid
8- No significant change except the reyticulte count that is mentioned above
I will update you with the new CBC after the first of October
manal
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Hello,
I was doing a web search and came across mention of carao and I was lead to this forum. I'm finding everything that's happening here very interesting. I have sickle cell anemia and my Hb usually stays around 8. I have been experiencing more discomfort from my disease as I grow older and was wondering what alternative treatments there may be out there. Is carao very effective for sickle cell as well?
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Hello Meli,
After 4 years of constant clinical experience for sickle cell anemia (resulting from regular donations of the product to a Nigerian hospital: http://www.anemiaanswer.com/sokoto.htm) I consider carao fruit to be proven effective for sickle cell disease, and I challenge anyone to contradict that. However, I think discussion on carao for sickle cell is not appropriate on this thalassemia forum (Admins, correct me if I am wrong). Therefore, please PM me or contact me though the anemiaanswer.com website if you have any questions. -- Lloyd Standish
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Lloyd and Everyone,
Our group does contain some who have sickle cell or beta thal sickle cell, so the results for carao in sickle cell patients is very relevant. Please feel free to post any advice and results.
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Lloyd:
I followed the link you provided and the results that Dr. Sokoto has been experiencing are amazing. I could only hope to experience such results! What is the common dosage for an adult female? Also, do these trees only grow in Costa Rica?
Andy:
Yes, i think learning the results for both thalassemia and sickle cell are very interesting and important. I actually first came across this forum last year when I first started ExJade. I learned that you should not use a metal spoon then. I find this forum very kind and helpful :)
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Thank you Meli,
We are glad that you received helpful information on our website. Our members are indeed very kind and knowledgeable. Andy is preparing for a trip to Singapore where he will be gaining even more useful information to share with us.
Good luck with Carao.
Sharmin
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Hi Meli,
Yes, the results obtained by Dr. Sokoto (which is ongoing, of course), are amazing. My hope is to promote planting of the trees in all the suitable tropical areas. They are very hardy and vigorous and drought-resistant, and should grow and produce in many tropical areas of the world. The trees do need a long dry season (preferably 6 months long) to properly ripen the fruit. I plan to publish on a new website full information on production of raw extraction carao, using equipment that can be built at low cost. Our methods are based on the use of solar energy.
The recommended dose for an adult is 4 teaspoons (20 ml). When symptoms of sickle cell have disappeared, the dose can be reduced. Use can even be completely interrupted for several months, and benefits are reported to persist.
Lloyd
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I am looking forward to receiving Carao. I'll begin reporing results once we receive it.
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Hi Sharmin:
I wish you good results with carao as well.
I look forward to what Andy will learn in Singapore!
Hi Lloyd:
It would be wonderful if the trees can grow in more suitable areas. This seems like a plant that could be helpful to so many people! Using solar energy is a great idea.
Wow, carao sounds very promising. I'll have to give it a try sometime when I am not suffering as much financial hardship. I'm looking forward to future results!
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Thank you Meli,
I hope you also experience success with Carao:) I'm glad to hear that it is helpful in Sickle cell anemia as well.
We are all looking forward to hearing what our friends learn at the conference.
Best,
Sharmin
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I will be receiving this product within a few weeks and I am eager to begin using it. This product seems to be quite promising - and hopefully we will see benefits in our childrens' over all health and well being. We are quite fortunate to have the opportunity to be involved in this study - I could not wait for my son's hg to stabilize so that he could begin. Zaini and Manal you have done such a great job at keeping track and reporting results - I will do my best to do the same.
Lloyd has been very generous in giving us the opportunity to join his study - and it would be very helpful to him and all thalassemia patients if we can be sure to take the supplement regularly and to report the results as requested. In this way we can learn for ourselves how the supplement benefits us and we can help other thalassemia patients as well. If we post our feedback Lloyd can also do follow up studies - which is once again beneficial to us and other thal patients.
We have an opportunity to make a difference,
Thank you and all the best, :goodluck :goodluck
Sharmin
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Hi Lloyd
On October 4th
Hb is 6.6 and the reticuolyte count increased again to 9.3% though last month HB was 6.5 and the count was only 3.5 %. This relation drives me crazy :huh :huh
This month extra vitamins and minerals in addition to glutathione are being added to what my son takes.
I will update you on the next month. By the way my son started bottle number 4.
PS: His uncle sent us from the Stated 3 extra bottles
manal
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I actually have personal experience with this product. In 2005, my partner's HB was down to 8.6. Although he was borderline for a transfusion, his hematologist allowed him to go home and see if it would improve over a week or two. Immediately, we searched the Internet for anemia solutions and came across Lloyd's site for the Carao Fruit syrup (we call it syrup--not sure if it is considered a syrup by Lloyd).
Within two weeks of receiving the syrup, he started to feel better, in four weeks his HB had improved. He says that they syrup gives him "a lift".
This is only our experience. I don't know whether it would work for everyone, but on a personal level, I feel this syrup was a gift from God and I recommend it.
Rachael
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Thank-you Rachael.
It is good read, good feedback about this product ,It's encouraging to know.
Kathy
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Wow, that is great Rachael! Thanks for sharing your experience with carao.
I hope all on this forum who try carao will have promising results :wink
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andy this plant ,is bloom after winter and leaves is small only coz we have here infront of our house
if time of bloming fower nice flower ok ill wait if their is a fruits n flower and i will conpair to your picture..thank u
and wer can get wheat grass seeds for breedding..to plants am from philippines..thanks
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quel, can you post a photo of the tree for us all? I can probably tell you right away if it is Cassia Grandis (carao). If you want to plant carao seeds, I send them for free for $2 postage.
Lloyd Standish
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Dear Llyoyd,
For the record, i still have not received the carao juice. I think it has been quite a while since you posted. Could you please check with the postal as to where it has gone to? I sure hope that it does not go somewhere else!
Really want to try it on my son and help the rest of the group here on the studies of the effectiveness of it.
Later!
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Hello Al,
I shipped one package of 2 bottles to you on July 15. That's almost 3 months ago! I only shipped 2 bottles instead of 4 because you never did pay shipping (postage). I shipped before receiving your postage payment to avoid delays while you got the payment to me. Your lack of action to make the postage payment does not seem to me to show good intentions on your part.
Economy postage for 2 bottles is USD $11. I don't mind paying postage to ship to those who are unable to afford it, but you did not say that was your situation.
Payment from Malaysia is relatively simple with PayPal, which is available from Malaysia. A credit card is not necessary - you can use a bank account in your local currency. There is no transaction fee (the seller pays the transaction fee, which means me, although in this case I am not selling anything.) All other payment methods from Malaysia (except credit card) will be difficult, slow, and expensive. Visit http://www.paypal.com. My paypal address is lloyd <at> costa-rica-natural.com. (Replace <at> with @ and remove spaces.) If you want to use a credit card, email me for a special payment link.
The non-delivery of your package is, as I see it, a separate issue. I have no idea why your package did not arrive. We ship by airmail, in this case economy airmail, since I had to pay the shipping. I have heard of delays of 2 months for shipments to countries in Africa, but 3 months sounds like "lost in shipping" to me.
If you are SURE that you have a mailing address that is good for international airmail, and reasonably sure that your postal system will not steal your mail, it is worth trying again. Occasionally (very seldom), shipments are simply lost, and it can happen with any destination country.
However, if you want me to try again on your shipment, I would like for you to pay postage this time. You don't have to pay the postage on the non-delivered package. However, since one package to you was already lost, I prefer not to attempt to send 2 more to you at the same time. If you want a reshipment, it will have to be only one package of 2 bottles.
If we are going to make a reshipment, my first preference would be to try a different address (at a different post office in West Malaysia, preferably.) Please send me the shipping address via email. If it is the same address as before, please confirm it. You can send me email by using the send email to the left of this post.
Regards,
Lloyd
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Hi Lloyd,
I am eagerly awaiting the product. I will post my findings once I begin using the product.
How is everyone else in the trial doing? Looking forward to hear how you are all doing!
Sharmin
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This is Lloyd Standish, the sponsorer of the informal study of carao for thalassemia.
The idea of this study is to gather information on carao fruit for thalassemia, since we have only limited information. (On the other hand, there is extensive clinical experience with carao for sickle cell disease and "regular" anemia, as well as a huge number of "anecdotal" reports of success.)
Carao has been repeatedly reported to allow sickle cell disease patients to avoid blood transfusions. It is my hope that carao fruit will be found to be similarly useful for thalassemia, or that it at least significantly reduce the frequency of transfusions.
The terms of this study were that each participant post his or her results directly to this forum. Unfortunately, however, out of 10 initial participants, only 2 have given any feedback at all. This is an unacceptably low level of cooperation. I have set the acceptable level of cooperation at 70% (7 out of the 10 participants). [bgcolor=#FFFF00]Please visit http://www.thalassemiapatientsandfriends.com/index.php?topic=1791.msg17338#msg17338 for a summary of partipants' information.[/bgcolor]
If the study participants will cooperate and will post the requested information (see the link above), I would be glad to sponsor more such studies by providing free carao fruit. Otherwise, I will not continue to make these donations. The choice is in the hands of the study participants.
To forum member poo gill, who requested to be included in the carao for thalassemia study, I have to inform that participation in the study with free (donated) is now closed.
However, note that the carao fruit product can be purchased at the website http://www.tropicalhealthfoods.com. Note further that the product is guaranteed, meaning that if it is purchased for thalassemia and it does not give "satisfactory" results, we will refund the purchase price (shipping excluded). Therefore, anyone here with a desire to try carao and help the forum community with feedback on it can always do so, with the only "risk" being the cost of shipping.
Finally, my (very) small company does make donations of the product, but never based on unwillingness to pay, but rather inability to pay.
Lloyd Standish
CR Natural, S.A.
Costa Rica
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Hi Lloyd
I am so sorry for the inconvience, i will PM the other participants and see what has been delaying them. i will let you know if i receive any response. Definetly there is something because everybody was excited about it. I do encourage everybody to give it a try as generally i think it gives energy and i hope in third CBC i find a change in the Hb
manal
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Thank you for this Lloyd,
We indeed appreciate your donations to our members and we are very excited to co operate with you in getting these results.
As Manal said, we will determine why our members have not been able to post their results.
Thank you again for helping our members and giving us this opportunity,
Sharmin
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Thank you very much for your encouraging words, Sharmin and Manal. I hope the other study participants will "get with it" and post their results.
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Lloyd, you are most welcomed. actually we are the ones who should thank you for your precious offer. I have sent the private mails but i need to know who are
1- Karen James
2- Om
I am trying to see their '' member names '' but actually couldn't till now, so if you know them please let me know
Thanks
manal
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Dear Lloyd,
Manal has contacted all of the members signed up in your study - we hope to get responses soon.
We have been able to reach everyone except for Karen James. Lloyd, do you know what name we know Karen by so that we can contact her.
Would Karen James kindly let us know if the product has been received and is being used. Also if you could please post your results so that Lloyd can do his study and in effect help thalassemia patients as well?
Lloyd, thank you again for you patience with our group.
Sincerely,
Sharmin
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I find it very frustrating. To me, this is an exciting opportunity to see if thalassemics will respond at all to carao as those with other types of anemia have. I am often surprised that people who routinely accept the use of pharmaceutical drugs on a regular basis won't give a natural food product a fair chance. There is no quick fix with thalassemia and it requires constant effort to stay healthy. Patients and parents need to understand that with many of the supplements that can be helpful in thalassemia there may not even be any noticeable effects, as much as there may be an absence of problems that one would see without taking vitamin D and E, B-Complex, minerals etc. We are faced with questions like does wheatgrass work? Does carao help? And the only way we will know is if people commit to long term trials, even if informal. Although, there has been only a small response in this initial attempt, I think that over time we may see a few more who are willing to give it a good trial. The effects may or may not be seen in Hb level but those using it should be looking for other things too. General energy level. Overall health. Fewer or milder illnesses. A boosted immune system. These are the types of things people need to look for. I hope we can get some long term commitments to try carao daily and keep up on reporting.
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I am sorry for your inconveinience Lloyd,this indeed can be frustrating,I hope that members will respond positively to our moderators,for my daughter,it seems to be working positively,even if it can delay transfusions a couple of weeks,i'd be happy,i want to buy more bottles,Can you charge me on the same credit card number if you have it on your record? for four more bottles?
If you don't have that number and my address in your record then please inform me i'll PM ypou the details.
Guys,
Lloyd has done us a great favour,a favour that a multi-national drug company will never do,so plz be responsive.
Zaini.
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Hello Zaini,
Thank you very much for your supporting words. Thanks very much for helping others by posting your feedback. As I have pointed out, all user feedback, positive and negative, is important in order to build the knowledge base on use for thalassemia.
The carao fruit product can be purchased through the secure order form at https://tropicalhealthfoods.com/order.shtml. This is a new domain, replacing the old www.crnatural.net.
We do not store credit card numbers, so no, we cannot re-use credit card information, although we do have billing addresses on file.
I'd like to warn everyone that the "economy" shipping option available only for "Africa, Asia, Australia/NZ, Oceania", although much cheaper than regular shipping, can add WEEKS to delivery time.
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You are welcome Lloyd,
Infact i am the one who is thank ful,i'll ask mr mamdani again to to do me the favour and order carao on my behalf,i'll inform you about this once i get in touch with him.
Zaini.
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Lloyd,
I received the Carao packages in the mail today.
Sharmin
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Lloyd, I am giving my son his first dose of Carao today. I will update with each transfusion (every 4 - 5 weeks).
1. Confirmation of delivery of the carao - October 23, 2008
2. Date when carao is begun - October 23, 2008
3. Dose given - 4 tsp with warm milk
4. Age and diagnosis of patient - 10 years, thalassemia major
5. Average hb before carao was begun (the last several blood test results, if available) - pretransfusion hg 90 - 100
6. Results of all hb tests done during or soon after the period of use of carao. Of course, the date of the test(s) must be included (hg at 4 weeks 103, hg at 5 weeks 90, hg at 5 1/2 weeks 88).
7. Whether or not any other treatments were started during the period that carao was given - began B complex (50mg) October 25th.
8. Any extra observations, such as observations on energy level and effects on the overall health of the patient
Thank you kindly for sending us the product and for this opportunity.
Sharmin
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Hi Lloyed
I was expected to post the third update on my son on the first of November. I will have to postpone this for a couple because he is having a cold due to sudden change in weather. So iwill have the CBC by the mid of November.
manal
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Lloyed, as for my update,
1. Confirmation of delivery of the carao: Just two bottles only, still i didn't receive the other two
2. Date when carao is begun - October 28, 2008
3. Dose given - 2 table spoons, my spoon is 10 ml
4. Age and diagnosis of patient - 35, thalassemia minor
5. Average hb before carao was begun on October 4: - HB is 10.9 - MCV 62 - WBCs count 3.200 - platlets 365,000
6. Whether or not any other treatmen were started during the period that carao was given - : just a mutli vitamin centrum silver but not on regular basis sometimes i take apeppetite supression medication cause i am working on decreasing my weight
manal
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Hi Lloyd
1. Confirmation of delivery of the carao: Just two bottles only, still i didn't receive the other two
Today, i confirm receiving the other two bottles
Thanks you so much
manal
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Hi Lloyd
I am extremely sorry for the delay. I did not have access to the net. It`s over a year since Hassan has been on carao(STARTED ON NOV 2007). I have been very regular with carao until the last couple of months. He has been quite sick the last couple of months with one infection after the other. Hassan is 2 1/2 years old, he had his first cough last month and his first cold this month. Although carao has not reflected anything positive on his hb, it is to be noted if it helps to increase immunity.
Maha
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Hi Lloyd
We did the CBC for my son(3rd update after beginning the Carao), everything is just stable though he had a fever for 4 days in November
HB ...6.5
MCV ...53
Retix count 5.5%
Bilirubin 2.4 ( don't know why it is increasing)
WBCs count 10,000
Platlets 480,000
Concerning my update
Still the same as before no changes, but actually i take the dose at one time (20ml) cause i can not stand taking it twice a day because of the taste. Some days i feel very energetic , but too early to judge anything as it has been a month and half since i started
If you want to ask any questions, please feel free
manal
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Dear Lloyd and everybody
I am extremely soooooooooo happy,i did a CBC today and for the first time since my son was diagnoised his Hb is 7.2 :cheer :cheer :cheer :cheer I know some of you may think this is too low but for me i never saw this reading before
Lloyd,
HB for January 7.2
MCV 53.4
bilirubin (total) 2
Retix count 6.4% ( i really don't understand this at all because when HB increase this count should decrease but with me it goes the opposite.....any explaination)
The only thing i am giving Ahmad beside the carao for the last 3 month was an extenssive course of supplements ( all what he was having deficiency in including zinc, vitamin A, gluthathione.... and others)
Lloyd
As for me, my HB increased from 10.9 to 11.3 and i feel good
Please feel free to ask any thing
manal
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Manal,
I am soooooo happy for both of you!! I hope that Ahmad's hg remains 7.2 and above from now on! I am glad that your hg is good too:)
Sharmin :cheer :cheer :cheer
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Thanks dear, i too wish the same, actually i am afraid to be too happy.
Please God don't let him go down again
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That's wonderful Manal :hugfriend My daughter is also taking carao,and her pre transfusion hb this time after 4 weeks was 9.5,which i believe isn't bad,right? I am supposed to keep her hb between 9 and 10,right?
Zaini.
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Yes Zaini, you are right and my general obsevation is that the max benefit from natural sources like carao don't come at one time but they accumulate over tie so i think the more she takes the more her pre transfusion hb will increase inshallah
manal
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Dear friends
This thread seems interesting & I landed here from a Google search. I'm a beta thal minor from Sri Lanka & my hb level won't pass 10, I'm a vegetarian & rarely eat fish. When I was a kid my parents used to force feed steak, liver etc and those days I had a long black hair. Ever since I became partly veg (fish + veg) around 15 years back my hair growth hindered & per day lot of hair falls out :( I went to so many dermatologists, many medications such as hair re-growth formulas nothing controlled my condition to a noticeable extent.
One Indian dermatologist at Apollo hospital pointed that amount of blood circulation to the scalp really matters when it comes to a healthy hair cycle, if blood circulation is minimal because in my case (low hb) it can shorten the life cycle of hair roots, and cause the condition called telogen effluvium (healthy hair strands falling out due to lack of nutrition) http://en.wikipedia.org/wiki/Telogen_effluvium
Although my energy level low as in any thal minor, I keep my mind steady & face day today work, but I'm not in a position to control my hair problem...
I would like to know if any of you (thal minors) had success with this natural supplement increasing your Hb levels at least to a minimum lower level...! If so I would like to give it a try.
Kind regards
Indunil
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There's a confirmed thal minor in Costa Rica whose HGB is maintained in normal range by carao. Her name is Cinthya. Some information on her case, with published blood test results, is at http://www.hemobuilder.com/node/24 (http://www.hemobuilder.com/node/24). Cinthya will answer your questions if you email her at cinthyaaguero at yahoo.es (spam prevention: replace "at" with "@" and remove spaces).
I am by the way the producer of the carao fruit product who sponsored the test of it for thalassemia a couple of years ago through this forum. In hindsight, I was disappointed that so few thal minors tried it (only one, I think). In my opinion it is probably very effective to raise blood values in most cases of thal minor. For thal major, there have been reports of some benefit, but not dramatic. For all the information I have collected for carao used in cases of thalassemia, including some reports from this forum, go here: http://www.hemobuilder.com/node/34 (http://www.hemobuilder.com/node/34).
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Hey there,
Thank you so much for the info & testimonials, I would like to give it a try but at the moment I cannot afford it on my own. Shipping cost to Sri Lanka itself is too much to bear personally :(
Highly appreciate if a Sri Lankan pharmaceutical company, medical practice, Doctor could look into the feasibility of adopting it. I hope clinical trial in India would have gone successful with sicker cell patients. Same way I hope this medicine, herbal extraction could be successful when it comes to Beta thalassemia minors & intermediates.
Maybe some organisation from Sri Lanka will land here someday... & show their interest in carrying out a clinical trial as in India :rolleyes
Tx
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BTW according to bellow sources Carao or Cassia grandis trees could be grown in Sri Lanka. But I haven't seen a single tree yet, if there's a way to get seeds I would like to try planting them in my garden.
http://www.worldagroforestry.org/treedb2/AFTPDFS/Cassia_grandis.pdf
Pink Shower Cassia ( Cassia grandis ) in the Royal Botanical Gardens , Peradeniya , Sri Lanka
http://www.photographersdirect.com/buyers/stockphoto.asp?imageid=1624398
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I'm sorry the shipping alone is too much for you.
I'd be glad to send you or anyone else seeds of this magnificent tree (contact me: http://www.hemobuilder.com/contact (http://www.hemobuilder.com/contact)). It is a beautiful ornamental and is very vigorous growing. However, a long dry season is required to properly ripen the fruit. I think it needs at least 4-5 months of dry weather (extremely little or no rain) to ripen fruit.
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Lloyd
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Is Carao useful for Thal minor?
I suffer from anxiety, depression, memory loss, dizziness and only lately I have attributed all of these to my Thal.
I did CBC, my Hemoglobin is 11.4 g/dl
thanks.
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Hi Andy,
Does this helps Thal Majors? Anyone confirmed the rise or as such?
Regards.
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Pratik,
Carao may not have a significant impact on how often a thal major is tranfused. This being said, I definitely notice a sense of well being, more energy between transfusions and an improvement in color when little A takes carao.
I think that carao may be effective in keeping the transfused red blood cells healthierand perhaps making them last a little bit longer. It will also protect organs from the harmful affects of free iron. I think it is definitely worth a try. The smell of the drink is absolutely terrible, but the effects are worth enduring the taste and smell.
Best,
Sharmin
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Sharmin,
Is Little A still taking carao?
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Zaini,
Little A is not taking Carao at this time, during the time that he was struggling with the antibody etc. he was on a lot of unpleasant meds and supplements and carao was not helping the situation. I wish there were a more pleasant way to take carao. I think that it was helpful in many ways...
Is Lil Z taking Carao?
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No she is not either,as much as i'd like to,its just way too expensive to get it shipped here.
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I'm Lloyd the producer of the carao fruit product. I'd like to point out that we are now shipping from USA, which has lowered the shipping cost of 4+ bottles considerably, plus there are tracking numbers. 4 bottles to Pakistan now ship for USD 62.43 (shipping only, down from about USD 80). 4 bottles for a child about age 2-8 (2 teaspoons/day) would be a 20 week supply. The new informational website (with several reports on use of carao fruit for thalassemia, look in the left-hand panel for the "Thalassemia" category) is at http://www.bloodhealth.net
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Thanks so much Lloyd, you are doing great work :)
the thing is when we convert these numbers in our currency they become thousands of rupees,and with medical bills getting higher and higher here,its just getting tough,transfusion charges,then exjade and then supplements,costs just keep adding up.
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Hi Manal, I know you don't know me but I was jusreading about Carao. You said u started using it in 2008. It is now 2012. Would you mind telling if it works.
Thanx
Pooja
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Hi pooja
I am terribly sorry for such a late reply
he took it almost one year and nothing was significant on the hb... but I guess it gave some energy.
manal