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

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 and 4 months, 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.
    Blood test results from January 31st, 2009
    3 1/2 weeks since last tx - hemoglobin today 69

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 - his energy has been great during the last 3 weeks - he came down with fever chest/nasal congestion on Thursday and became pale today.  We think that his low hg may have resulted from the cold. 

Will update after next blood test.
   
Sharmin

Lloyd,

We are now on the third bottle of Carao. 

Sharmin

We are on the seventh bottle.

Zaini.

Way to go Little Z 

Sharmin

Thanks Sharmin  .

I don't know if carao has effected Little Z's hb levels,she has returned to 4 weeks interval between transfusions,but there are so many factors,now when i go to hospital ,i make sure that transfusion rate is slow,rather the 1 and a half or 2 bags per hour.

One thing is for sure,carao has not shown any negative impact.

Zaini.

Hi Zaini,

The more that I learn - the more I think that the benefits of products like carao may be difficult to measure in terms of hg levels or ferritin levels.  I think that these products increase the efficiency of the red blood cells and their oxygen carrying capacity.  I think that they have an antioxidant effect by binding free radicals (including free iron) in the body - and probably positively affect the cardiovascular system by increasing circulation.  These affects in the long term protect patients from the affects of thalassemia. 

I hope that most thal patients are on a variety of these type of supplements.  Carao is a very good one - although it stinks  .  I am glad that the kids are drinking it up though

Sharmin

I totally agree Sharmin, i have learned in Singapore that there are certain things when taken will not directly affect the HB but not taking them will cause serious damage. The first example of such things are antioxidants. I too believe that carao is doing something

manal

Hello Lloyd

I have updated you with the January results in the link below
http://www.thalassemiapatientsandfriends.com/index.php?topic=1259.msg22365;highlight=carao#msg22365

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      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

As for the February update:

1- My son finished till now 6 and half bottles ( by the way i ordered 7 more bottles through a relative in the states and i received them, so he still have 4 bottles left)

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 ( his normal without anything other than the supplements)

6- This month , February his Hb is 6.1

7- No treatment given except minerals and multivitamin, L-carnitine and folic acid


I will update you with the following CBC on March


As for my update on the carao:

You will be happy to know that my HB today is........ 12 in such a short time

manal

Manal,

I am glad to hear that your hg has increased!  I hope that Ahmad's hg will increase again too.  I also know that the supplements are helping his hg be more efficient. 

Sharmin

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 and 6 months, 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.
    Blood test results from Wednesday, February 25th, 2009
    3 weeks since last tx - pre tx hemoglobin Wednesday 100

7. Whether or not any other treatments were started during the period that carao was given - began B complex (50mg) October/08, began nigella sativa and colostrum Wed, Feb 25th 2009.   

8. Any extra observations, such as observations on energy level and effects on the overall health of the patient - Good energy, he looks and feels good.  He has had a cold for the last few days - but his hg level is decent. 

We are currently on the 4th and final bottle of Carao in the package.

Will update after next blood test.
   
Sharmin

Hi Sharmin,

Thanks for the update. 

Would your conclusion so far be that carao has given little or no improvement in your son's hemoglobin level? 

You say he has good energy and looks and feels good.  Do you think the carao has definitely contributed to that?

Regards,
Lloyd

You are welcome Lloyd,

There are many factors that are affecting his hg right now - such as the antibodies, therefore I cannot give you a conclusive answer about whether or not  carao is affecting his hg levels.  I do however believe that from the time that I started using carao and bcomplex his energy levels and general mood have changed 110%. 

After his ritixumab treatment this summer he was easily tired, irritable, quiet, easily out of breath and he did not look well.  Since I began carao and bcomplex he is a completely different child - happy, energetic, not easily out of breath, and I can barely keep up with him.

These are my observations,
Sharmin

Lloyd,

What i think is carao may not effect hb levels in these kids,but it is helping in keeping them energetic.We are on the 8th bottle now and i'll have to find some one to order more bottles for us.

Zaini.

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 and 6 months, 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.
    Blood test results from Tuesday March 17th, 2009
    3rd week since last tx - pre tx hemoglobin Wednesday 99

7. Whether or not any other treatments were started during the period that carao was given - began B complex (50mg) October/08, began nigella sativa and colostrum Wed, Feb 25th 2009.   

8. Any extra observations, such as observations on energy level and effects on the overall health of the patient - Good energy, he looks and feels good.  He has played a lot of hockey during these last few weeks.   

We have almost finished 4th and final bottle of Carao.  Lloyd thank you so much for giving us the opportunity to participate in this study and sending us the product. 

Will update again after next blood test.
   
Sharmin

Sharmin wrote:

There are many factors that are affecting his hg right now - such as the antibodies, therefore I cannot give you a conclusive answer about whether or not  carao is affecting his hg levels.  I do however believe that from the time that I started using carao and bcomplex his energy levels and general mood have changed 110%. 

After his ritixumab treatment this summer he was easily tired, irritable, quiet, easily out of breath and he did not look well.  Since I began carao and bcomplex he is a completely different child - happy, energetic, not easily out of breath, and I can barely keep up with him.

This sounds great, and I think carao is most responsible for most of this benefit.  I hope this experience (along with many others) inspires medical attention, including a formal study.