Chronic Lymphocytic Leukemia (CLL) Support Group

Chronic lymphocytic leukemia (or "chronic lymphoid leukemia") CLL, is a cancer in which too many lymphocytes (a type of white blood cells) are produced. CLL is the most-diagnosed form of leukemia in adults. Men are twice as likely to develop CLL as women, however the key risk factor is age: over 75% of new cases are diagnosed in patients over age 50.

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Good Response to High Doses of ECGC and Neem

I was diagnosed with Chronic Lymphocytic Leukemia (CLL) seven years ago. Even though I was still in the watch and wait stage, I was getting more and more infections requiring frequent doctors visits and even hospitalizations. My off-the -scale blood abnormalities confirmed that I was circling the drain.

But now my whole world has changed. I feel good again. No more infections. I have been free of all symptoms for many months now and I am no longer skeptical about the changes. At Roswell Park Cancer Institute they told me that my that last few blood tests were perfect.

I am not doing anything weird or taking anything that is not already being investigated by major cancer centers with promising results for treating CLL. All I am doing is taking higher doses of herbs than what one would normally take. While Green Tea is supposed to kill cancer cells in a test tube I had no illusions that simply drinking a few cups green tea would be enough to stop my downward spiral.

I read about the research at the Mayo Clinic and other places that show promising results with higher doses of ECGC (Green Tea Extract). However, medical research normally takes many years and with herbs even longer. I decided that I could not wait that long and started my own treatment based on reports from these various research efforts. This is what I have been taking per day:

Neem Leaf - 400mg Capsules: 4 capsules - three times a day

EGCG - 500 mg Capsules: 3 capsules in the morning on an empty stomach - it is best absorbed in a fasting condition (w/o Vitamin C)
2 capsules with 1000mg Vitamin C during day
2 capsules with 1000mg Vitamin C at bed time.

During the day I also drink 3 to 4 large cups of green tea using two tea bags and adding 200 mg of Vitamin C per cup.

The Vitamin C changes the stomach acidity which helps to absorb the green tea. I buy Vitamin C tablets and crush them in a pill crusher before dissolving them in hot water or green tea. (PharmAssure brand Vitamin C seems to have the fewest additives which may neutralize the acidity.) I buy the EGCG and the Neem Leaf Capsules in larger quantities over the internet. It comes to about $2.50 per day.

Its been long enough now and I am no longer skeptical that my newly found good health is just a fluke. Other than taking all these supplements, my life is back to normal. I am a 70 year old male and I started running two miles a day. I am also taking normal doses of other vitamins and I dont drink or smoke. I am not a doctor or a scientist. I am only giving a testimonial about my self-prescribed treatment and my personal results. Compared to chemo it has been a cake-walk. However, we are all different and everybody should go very slow with upping to these dosages and should always check with their doctor before taking anything new.

Replies

deleted_user
deleted_user

I keep commenting here, and it never shows up! Hwalker, thank you, bless you, for this posting. I've been battling CLL for 10 years, also with alternative means. I would love to get a dialog going with you here. I hope you get this message.
deleted_user
deleted_user

I too have sent replies with questions, but again it never gets posted.
Your information has been excellent and I have started the regimen.
Thank you so much.
I am more jittery from the green tea tahn my beloved espresso, but I look positively at it it that is a marker that tells me that the green tea has been well absorbed.
Jeff
deleted_user
deleted_user

I'm not sure I can do the green tea regimen, as I have anemia -- and green tea can make anemia worse. I will be starting with the Neem pills first, and then work my way onto the green tea. (The anemia comes and goes, so I may be able to start those pills eventually.) It would be nice to keep posting here, and say how we're doing.
deleted_user
deleted_user

Thank you for all your support - my heart goes out to you in your struggle with CLL.

You are doing the right thing by going slow with the EGCG and also check with your doctor.

Unfortunately the trials with EGCG at the Mayo Clinic were discontinued as was the trail with Neem at Roswell Park Cancer Institute. In both cases the manufacturer pulled out. More money to be made elsewhere with less hassle I would guess.

The doctors can't recommend anything which has not been approved. This leaves us on our own up the river without a paddle. We can only rely on ourselves to keep each other informed and share our stories of success and failure.

With the Neem as far as I know no safe or effective dosage has been established and not much is out there. I was told, however, that one patient at Roswell went into remission from taking neem. Also they had early indications that there is a positive effect on CLL and the leaves are better than the bark or the oil. But again I have no idea what their dosages were. I just take my neem leaf capsules at random times during the day and picked a dosage out of the air.

With the EGCG it is a different story. They had two clinical trials at the Mayo Clinic before the manufactures pulled out. We can learn a great deal from the successes of these two trials. In my case it was a life savor that they put the results of those early trials on the Internet.

I can give you links for those trials but it is easy enough to Google for the info. There is so much out there.

I am also a struggling newbie with Internet.

My health is holding up great so far - knock on wood.

Let's keep in touch and learn from each other.

hwalker
deleted_user
deleted_user

Thanks for writing! I've decided to start the neem leaf pills right away (started today, actually) and will eventually add the decaffeinated green tea pills. I was having palpitation with the regular pills, so that might be a solution. I've also heard good things about TBL12, and that is on my "back burner." It's always very uplifting to hear from someone doing well!
deleted_user
deleted_user

talked with my dr and he has said ok to the ECGC. is there a particular brand that you use or recommend? there are so many out there in the stores and the internet and many have "other" fillers. Im just so confused and scared about everyhting that i read and am told. Right now I am willing to try anything. thanks for any help.
deleted_user
deleted_user

I would also love the website if you would like to share. Has anyone ever taken the Essiac pills (or drank Essiac tea)? I am recently diagnosed and very interested in starting anything that will help. Also, where can you buy Neem? I have never heard of it before in all my readings so far. Thank you for your response :-)
deleted_user
deleted_user

My best wishes for your battle against the CLL - ledbetter. I think you have a good doctor.
I have been getting my EGCG capsules from www.relentlessimprovement.com . They seem to have low caffeine and other bad ingredients but I think there must be other good sources out there. To cut down on the cost I buy several months worth per order.

I found out recently that the green tea and the EGCG can interfere with the folate absorption and I added Folic acid and vitamin B to my daily supplements. My RBC is now also within limits.
deleted_user
deleted_user

hwalker- thank you so much! good luck
hdk27
hdk27

just a word of caution- Neem leaves has been known to inhibit thyroid function -some studies found significant increases in hemoglobin, lymphocytes RBCS as well as decreases in glucose levels and hypotensive episodes were found as well- so please consult with your doctors and use all supplements with caution!

if you are using Essiac also use with caution as it can be a diuretic and can cause kidney stones-

I too use green tea EGCG but follow the directions to take after meals- I tend to take before bedtime bec a body @ rest absorbs better- I am glad to hear supplements are helping others in the W & W stage- it gives us all hope- good luck all!
szava
szava

I am wondering how you are doing now? I was dx with Cll in 2003, had chemo in 2006 and have been in remission since, altho , they thought they could give me a 2-3 yr remission it is stayed "hidden" for 9 yrs. It is now beginning to to show up again in my bloodwork. I am starting your Neem and ECGC program gradually to see if it will keep those cells at bay. Your last post was several years ago and I am wondering how your remission has been doing? Thanks for your original post and I look forward to hearing from you.
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