Discussion Forums > Working Towards a Cure
The Carao Trial - How effective is it & who benefits most etc.
healinglights:
Hi, I am new to the website. I had heard about caroa before joining this forum and always thought I would try it. I ordered the 4 trial bottles today to start my participation in the trial of caroa.
My situation is witih thallisimia minor ( at least my initial diagnosis was minor, but I've heard different since then). I usually have a count in the 8's the highest I remember is 9. I have several sisters who carry the minor trait too, but I seem to be more affected than they are, except for one. Unfortunately, one is in a dire medical situation right now and cannot have an operation because of low blood counts and anemia.
I have a theory that the effects of caroa are affected by blood type. I also suggested to Lloyd that as part of the trial participants should note not only whether the patient is minor, intermediate or major, but also whether they are affected in the Beta or Allpha chain. I think that might very well be the difference you may see in results. I am also rather curious to know alittle about the diet of people who take caroa, particularly too how they take it, whether with milk, juice straight etc.
It is strange that three of my sisters with minor were hardly affected until around menopause where everything worsened. It reminds me that around puberty was the worse time for me, other than pregnancy. So, I hypothosize that hormonal levels play a huge part in at least females and how affected they are by thallassemia at certain points in their life.
Anyway, that's a mouthful for a first posting. I will keep all informed of my results.
Andy Battaglia:
After reading your other post and this one, I wonder if your Hb level has been so low because you might also have iron deficient anemia, which can coincide with thal minor. Your Hb is quite low for minor and minor alone may not explain why. Have you ever had iron studies done to determine your iron level?
It is unlikely that carao can induce hemoglobin in alpha thalassemia. The hemoglobin inducing natural substances like wheatgrass, resveratrol, carao (possibly), etc. work by turning the gamma gene back on. This is the gene responsible for producing the fetal hemoglobin along with the alpha globin produced by the alpha gene. It turns off at birth and the beta hemoglobin gene takes over to combine with the alpha globin to form adult hemoglobin. With beta thalassemia, there is not enough of the beta globin to match the alpha globin resulting in lowered hemoglobin. By turning the gamma gene back on, fetal hemoglobin productions rises because there is now gamma globin to match with the abundant alpha globin. With alpha thalassemia, the deficiency is in alpha globins and turning the gamma globin does not help because there is already sufficient beta globin available. There is no other gene that can take the place of the alpha gene, unlike the beta gene which doesn't become active until late pregnancy. So no matter how much gamma globin can be produced by turning the gamma gene back on, there will always be insufficient alpha globin available in alpha thal.
healinglights:
Andy, thanks so much for your informative breakdown.
I have been pricked so much and studied so much, particularly during pregnancy, my iron levels and folic acid levels always appear fine.
My first preganancy before I was diagnosed I was given an iron injection every other day, and hospitalized ( they thought it was sickle cell). All it did was turn my skin dark, had no impact whatever on my counts. I have tried several different types of iron.
I am fed up with testing, as I have the kind of veins that require several sticks and numerous tries, and usually several different peoplel poking. last time a doc had to go to my inner thigh to take from an atery after at least 10 differnt people over three hours tried to draw blood. occasionally, God bless them I have met with better results from either more caring or more adept persons. But usually it has been such a battle that I now dread having blood drawn etc. I've stuck it out for years, but it just reached a point where the thought of going through it is enough to freak me out. I've lived many decades, so that would let you know I have been patient ptting up with it before. ( One of my daughters has the same problem, thank God it does not happen with my other children).
I am hoping the caroa will help. Wheat grass seems to give me a boost, but it wears off in a few hours. I just ordered a wheat grass juicer and plan to take it more frequently as its $2.50 a half onze shot where I live and that's getting to be rather expensive.
Andy Battaglia:
Healinglights,
If you are interested in another cheap source of wheatgrass, try the capsules found at http://www.iherb.com/ProductDetails.aspx?c=1&pid=4993
Kamut is an original, non-hybrid form of wheat, and the capsules are quite effective and also quite inexpensive at this site. My wife used these along with the wheatgrass extract from wheatgrassactive while she was undergoing chemotherapy and her energy levels were very good for a chemo patient. The doctors were surprised at how well she did during chemo and we both feel that wheatgrass made a big difference. You can safely take both wheatgrass and carao and benefit from the cumulative effect.
Lloyd Standish:
Al, could you please correct the spelling in the title of this thread (change "caroa" to "carao"). The incorrect spelling will make this topic invisible to a web search on, for example, "carao thalassemia"
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