The Carao Trial - How effective is it & who benefits most etc.

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.

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.

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.

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.

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"

Lloyd,

I made the spelling correction. Let me know if you see it misspelled anywhere else.

I suggest (subject to approval by the forum administrators) that this forum thread be used for carao study results and comments directly related to those results ONLY.  This will allow all results to be readily available in a single place, rather than spread out over many forum pages.  (If the administrators think an entirely new forum thread should be begun, this post will be moved.)

Carao study participants should copy the list below into a new post to THIS forum, one by each participant.  Participants can ADD new information over time, since any forum member can edit his own posts.

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.

Again, this forum is for carao trial results only and discussion directly related to those results.  For general discussion on carao for thalassemia, look here:
http://www.thalassemiapatientsandfriends.com/index.php?topic=1259.0

Here is the list of carao study participants, each of whom should make their results post (with all 8 points as listed above) to this forum thread:
[bgcolor=#FFFF00]UPDATED OCT 21, 2008  Carao study participants, please post your information to this forum as each of you agreed.  Below is a summary of information received as of Oct. 21[/bgcolor]

1. Manal (son) information provided
2. Manal (mother) mother's bottles not yet arrived?
3. Maha no information
4. Olivia Mary (Kathleen) no information
5. Karen James no information
6. Narendra no information
7. Mudit (non delivery to India, reshipment offered at my expense, no response received to my messages on Oct. 7)
8. Om no information
9. Al (still owes postage, carao shipped anyway but did not arrive to Malaysia, no response to my request for postage for reshipment on Oct. 14)
10. Zaini information provided
11. Sharmin (recently signed up, bottles not yet received)

For convenience of the participants, I am repeating below my use and dosage recommendations:

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

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.

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

PS: As for me i didn't start cause i only got two bottles for me not four. What do you think, shall i start anyway or wait until all the bottles arrive???

I wish everyone the best in this trial. 

I hope Ahmad and Zainab's hg begins staying higher and higher very soon. 

Manal,
I think we can decide that one 2-bottle package sent to you on 6/13 was lost in shipping. I will pay for reshipping of 2 bottles. I'm sorry you had this delay.  I suggest you go ahead and start using the 2 bottles that arrived, since the reshipment should arrive before they are finished.  2 bottles should last 5 weeks for an adult.

WHAT IS THIS YOU ALL ARE TALKING ABOUT ANY AFFECT DOSE IT WORK WERE CAN I GET SOME

This is about carao fruit for thalassemia.  Carao fruit is a natural forest fruit that is proven effective for "ordinary" anemia as well as sickle cell disease, but there is little information on use for thalassemia.  There is a study involving 10 members of this forum for thalassemia.  For more information, see this forum thread: http://www.thalassemiapatientsandfriends.com/index.php?topic=1259.0

Hi Everyone,

My daughter is going for tran sfusion tomorrow,we tested her hb to day and the reading is 9.9 after four weeks  since last few months her hb was hovering between 9.4 and 9.6 with 3 weeks intervals,last time her pre transfusion hb was 10.2 and her doctor allowed us to take a break of 4 weeks,and now 9.9 after 4 weeks,isn't it good? Does it mean carao is helping her? What do you guys think ?

Zaini.

Zaini,

That is good news. Carao may be having an effect so please continue to keep the records Lloyd requested and also comments about what you observe about her health in general. Hemoglobin levels can change a bit with the season, so we shouldn't jump to any conclusions yet but it is a positive trend.