Discussion Forums > Working Towards a Cure
The Carao Trial - How effective is it & who benefits most etc.
Manal:
I too agree Zaini with Sharmin, you have to have an average of the pre transfusion cause sometimes there are many variables that affect the result of the tests
manal
Zaini:
Thanks Sharmin and Manal, :hugfriend
I am not discontinuing carao,i still hope that it might work for my daughter,it's just that i don't want her pre transfusion to be lower then 9.5,doctor has given us three weeks appointment this time.let's see if there is any difference in her levels next time.
Zaini.
opkaram:
Hi-
I was away for sometime and couldn't post. Here is the update on the Carao Use and results for my Daughter
1. Confirmation of delivery of the carao – Yes
2. Date when carao is begun – 9th Sep 2008 ( we had to stop after 2 weeks as she developed some kind of Nausea with Carao, we are planning to start again this month)
3. Dose given – 2 Teaspoon per day ( we tried with Milk, Honey etc but didnt work and she vomitted often)
4. Age and diagnosis of patient – 4 years(Thal Major)
5. Average hb before carao was begun (the last several blood test results, if available) – Between 8.5 and 10
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 – 8.9 (8th Oct 2008)
7. Whether or not any other treatments were started during the period that carao was given - Hydrauxyurea
8. Any extra observations, such as observations on energy level and effects on the overall health of the patient – Nothing very significant
I think above result are not relevent as she was not on Carao for long, I will publis once we start again.
Regards -
Om
Sharmin:
Thank you for the report Opkaram, I hope that carao proves to be helpful for your daughter and that she overcomes the nausea.
Best,
Sharmin
Lloyd Standish:
Hi, this is Lloyd, who sponsored the carao trial for thalassemia.
Opkaram, I'm afraid results for only 2 weeks use are not meaningful.
Zaini, thanks for the detailed posts on results. Many thanks also to Manal. And thanks to Narendra, who I think is the only other participant who sent feedback. I think Sharmin, who started months after the main group, will also post results.
Unfortunately, too few participants sent feedback to make any of the results useful. I am very discouraged by the lack of cooperation of most of the 11 participants.
Although we do not have enough results to base any conclusions on, I will post my opinion. I think carao will be be found to give only slight, if any, improvement in hemoglobin for thalasemmia major. For thalasemmia intermedia, I think results will vary considerably, ranging from mild to moderate improvement. For thalassemia minor, I still expect results to vary from moderate to dramatic.
We already know that carao fruit is effective for most all "iron deficiency" and "blood loss" anemia. In the area of genetically-related anemia, my interest is now focused more on sickle cell anemia than on thalassemia. This is because we have seen consistent, dramatic results for sickle cell disease (with 4 years of continuous clinical use in Nigeria).
PS For an example of what motivates my interest in carao for sickle cell, here is a letter I just received from a woman in Nigeria (16 Dec 2008):
--- Quote ---Hi Lloyd,
My son is doing very well, i have no need to visit the hospital since after starting again on carao. His blood level is ok, there is less infection and crisis.
Thanks very much, if you can still help me get in contact with the woman whom i can use her credit card to order for more because i need to have carao always with me.
Best regards
Uche
--- End quote ---
(I have been in contact with Uche since last year. She has agreed to answer any questions by email. More information: http://anemiaanswer.com/cgi-bin/lgssearch.cgi?query=uche)
The demand for carao has grown to the point that we are barely able to keep up. My hope is to promote planting of carao trees, and local production of carao extract, in suitable places in the tropics, the primary goal being use for sickle cell disease. There is already a non-profit project underway in India, with a clinic being built, and carao trees being planted. Interested parties can write to the project chief, the social worker Rudradevananda (rudradevananda at gmail.com). Those who are able, please consider sending your donations to Rudradevananda. His email address (and Paypal account ID) is rudradevananda at gmail.com (spam prevention: replace 'at' with '@' and remove spaces).
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