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CLL and Supplements: Safety and Do They Work?

This is an answer to a recent email:
Question:
Do you take any supplements?  I get a little worried about these.  I was looking at the use of Beta Glucan to assist the immune system.  It looked really good until I linked it with Leukemia and then found it is not advisable for us to take, even though other pieces of information support its use in other cancers.  If it’s not an intrusion, can you say what you do on a daily basis regarding diet, supplements etc?
Answer:
My daily regimen has changed over the years, and now I take somewhere between 150 – 200 pills/day. (daunting, I know) I didn’t start taking them all at once. As a matter of fact, in 2005 -2007 I took none, as I went Macrobiotic. That worked for a while, then I had to make changes. So, yes, I think you should take supplements, but I would start one at a time, and give each a few days to see how you react, before starting another. I have a history of stomach aches and fibromyalgia-type pain. The best test (for me) is the blood test. That tells the real score. I do think, in fact I know that many of the supplements I take are crucial to my health. I will attach a list of what I’m taking now.
Keep in mind (I don’t mean this to be difficult, it’s just the reality) what works for me might not work for you.  I’ve been trying to copy what the others have done to get well, and it hasn’t quite worked for me yet.  But, still, we can learn from each other, on a trial and error basis. That is the good side of slow-going CLL.  I did try Beta Glucan for a while, and it did no harm, and no good.  Many of the supps that frightened me turned out to be good for me.  For instance, I’ve read, somewhere, that people with CLL should not take immune boosting supplements, like echinachea. So I stayed away from them.  Now I take Elderberry, Peak Immune, Olive Leaf (and I’m sure more, but they don’t come to mind). They’ve only helped and not hurt me at all! So give them a try. Just get your blood tested frequently enough so that you can stop taking something before it harms you.  I’ve found that if I stop a supplement, I get right back to stable.
Vitamin D!!!! One supplement you should 100% take, because it WILL help you is vitamin D.  Take 10,000IU a day, get your D levels tested (blood test) and don’t worry about taking too much until you’re over 100. I was at 13 or 19 when first tested (don’t really remember) and my last one was 89.something.  But this is vital. And look that one up. There is a lot of literature about how vitamin D is beneficial for cancer in general and CLL specifically.  This is a big one. You will improve if you take vitamin D.
I recommend what you can buy at Life Extension, the 5000 IU soft gel, and also I love Twinlabs Allergy D product, even thought the dosage is tiny. I take 5 of those a day and the rest in more concentrated pills. (I’ve started recently taking vit D 5000 IU in drops from Premier Labs, but haven’t tested since starting).
Below is my most recently typed Supplement list:

First Morning

Wheatgrass Juice (not pill, the real deal)

Armour Thyroid 15mg

Proteolytic Enzymes 3 pills

Colostrum Prime by Surthrival 1 or 2 pills

Probiotic

Currently Garden of Life or Ohira

(I change this up frequently)

Breakfast

Vit D3 5000 IU Premier Research Labs drops (or Life Extension soft gels)

Ubiquinol 200mg

Krill Oil 667 mg

Astaxanthin 4mg (one pill)

B-17 500mg (laetrile) tjsupply.com

Primrose Oil 1300mg Now brand

Curcumin 500mg

Vit E tocotrienol 1

Reduced Glutathione 250mg

Allimax 1

Olive Leaf 800mg

Pau D’Arco two pills

1 pill Premier Labs Digestive Enzymes

Premier HCL three pills (after each meal)

Biotin 1000mg

Biosil 1

Change O Life 1

Peak Immune 1

Amino Acid Complex 1

L Glutamine 1

Hemp Hearts three heaping tablespoons

Lunch

Calcium Citrate 400mg total

D3 Allergy D Twinlab  5 pills 200IU total

Magnesium Glycinate 200mg

Zinc Carnoisne (Gastric Soothe) 2 pills (have been out of this)

B-17 laetrile 500mg

Selenium 400mcg

Primrose Oil 1300mg

Thyroid Energy by Now 2 pills

B-Complex 1 pill

Glucosamine by Farrow 1 pill

Garlic by Solaray 1 pill

Elderberry 450mg

Pau D’Arco 2100mg

1 pill Premier Labs Digestive Enzymes

Premier HCL three pills (after each meal)

Biotin 1000mg

Change O Life 1 pill

Peak Immune 1 pill

Amino Acid Complex KAL 1 pill

Triphala 1 pill

L Glutamine 1 pill

Dinner

D3 2000mg

B17 500mg

Primrose Oil 1300 mg

K2 MK7 1 pill

Curcumin 500mg

Perfect Iron 2 pills total 100mg Carbonyl Iron

Vit C 1000 mg

Energyzing Iron 1 or 2 pills

Bioflavinoid 1000mg

Garlic 600mg

Olive Leaf 800mg

Pau D’Arco 2100mg

1 pill Premier Labs Digestive Enzymes

Premier HCL three pills (after each meal)

Biotin 1000 mg

Change O life 1 pill

Peak Immune 1 pill

Amino Acid 1 pill

L Glutamine Premier 1 pill

Bedtime

Protelytic Enzymes  working up to pills

Peak Immune 1 pill

Probiotic (switch it out, currently Ohira or Garden of Life)

Magnesium Glycinate 200mg

CLL and Supplements

cll and supplements There is a concerted effort on the part of the FDA to put supplements into the same class of regulation as pharmaceutical drugs. This is a move to make it too expensive for the supplement companies to stay in business, which would then put us all in the loving hands of Big Pharmaceutical companies. Not a good thing. I could say more, but Dr. Joseph Mercola has already done a good job of that. Click here to read his latest article on this subject.

I personally feel that the good quality supplements that I take for the CLL diagnosis I’ve had since 2001, along with my diet and lifestyle, are what is keeping me alive. Unfortunately, when I’ve sent letters to my Congressmen and Senators, they respond by letting me know that are planning to add red tape and regulation to the manufacture and sale of supplements in order to keep me “safe.” Excuse me, but I feel much “safer” when I’m able to buy and use my trusted supplements. Again, please read this article for more detail.

 

CLL Update August 29, 2012

There is a reason there are so few posts on this blog.  Initially I was positive that I could totally reverse my CLL diagnosis.  This hasn’t happened — yet.  My plan for this blog was to be an uplifting, upbeat place for people with CLL (newly diagnosed or those trucking along like me) to get a positive feeling.  To get hope and inspiration.  I have to admit I’ve been discouraged more than once since starting this blog.  But…. I’m still here, and I still have NOT had any conventional treatment — even though it has been recommended.  I’ve managed to turn the ship (to use a metaphor), but I haven’t yet been able to get the ship back to shore.  It’s been eleven years, and truthfully, I’m doing fine, and living a relatively normal life.

My last problem was with my Neutophil count, which about a year an a half ago were dangerously low.  That was when my hematologist was recommending Rituxan and Neupogen.  I didn’t want the Rituxan because I looked it up on Google, and apparently it doesn’t work well without a jumpstart from some chemo (perhaps a little bit of chemo?), so I said no thank you!  The same for the Neupogen.  Neupogen comes in a shot, which you apply yourself to your stomach regent — twice a week.  If that wasn’t bad enough, I looked that up as well.  Neupogen does increase your Neutrophil count, but it causes your body to stop making its own.  Eventually you need more and more frequent shots.  This did not sound like  a good plan to me!

So I conferred with my son, a Nutritionist, who suggested that I take several bacteria-, virus- and fungus-fighting herbs.  So I started on a heavy-duty regimen of Olive Leaf, Pau D’arco, Coconut oil, and Goldenseal.   This helped.  The next time I had a blood test, my Neutrophil marker improved.  After that, I decided to start the Ultraviolet Blood Irradiation treatments at the Wycoff Wellness Center in East Lansing, Michigan.  Prior to this time, I’d heard of it, but was frightened of the process.  They withdraw blood, add a little heparin, and then the blood is returned back into your vein, after it passes through a machine that treats your blood with ultraviolet irradiation.  I have to admit that it sounded scary, risky even.  But now that it’s been more than a year, I have to say that it most likely has been a factor in keeping my Neutrophil count closer to normal.  I get no more warnings and I’m back to being tested everything 4 months (rather than monthly).  The people there are wonderful!  It isn’t scary at all, or risky.

So while I have not yet effected a complete reversal, I can confidently say that I am stable.  I am much more consumed by caring for my ailing parents than I am in thinking about my diagnosis.  (I don’t “have” a disease, I have a diagnosis.  This is a comfortable separation in my mind.)  I’m planning another trip to Texas for another nephew’s wedding.  And perhaps I’ll change the picture in the About section.  I’m not taking the time now to illustrate this post because I am busy.  I’m well, thank you very much.  But I’m working part-time, taking care of my parents part-time, and trying to squeeze writing a book into my spare time.  Oh, and my husband and I are getting more and more into the raw food diet.  (I really have to write this thing more often.)

If you are dealing with the emotional toll of CLL and you want to write me, please do!  I always have time for that.  You are my number one priority. You can contact me through this website/blog in the comment section, or email me directly at cllalternatives@gmail.com. Think happy thoughts and be well. – Denise

Apricot Seeds and CLL Leukemia

Apricot Seeds
My shrink-wrapped apricot seeds, coffee grinder and the pills I made from them.

Like Wayne, an Oklahoman I met via the Internet, I have have both CLL leukemia AND diverticulosis.  I’ve never been officially diagnosed with diverticulosis, but every time I eat nuts or seeds whole, I suffer.  Sometimes for days.

It’s not the chemical composition of the nuts and seeds.  I know this because when I grind them into dust (flaxseeds) or buy them already ground into paste (almond butter) I can eat them with wild abandon — and no after effects.

Part of my good health program started in 2007 when I started taking amygdalin pills from Mexico, along with enzymes and other supplements.  I was advised to also eat the apricot seeds — in addition to the pills.  I tried this twice early on in 2007 and 2008.  Both times I suffered severe stomach upset.  For days.

But after speaking to Wayne in Oklahoma for the third time, my husband encouraged me to buy a pill making device and grind my own apricot seeds in our coffee grinder (Mr Coffee brand, available everywhere).  I’ve been doing this for just a few months.  My last doctor visit showed  a marked improvement in my WBC (from 32 down to 23… yay!)  But those numbers do tend to bounce around.  I will report back after my next visit.

The general way to take amygdalin, B-17, laetrile (all pretty much the same thing) is: if you have cancer of any kind, it is generally recommended to work your way up to three 500mg tablets/day, one at each meal — in addition to eating the apricot seeds.  Once again, it is recommended to take one seed for every ten pounds of weight, each day.  I personally grind my seeds and then put them into capsules with the help of a pillmaker I found online, but many people are able to eat the seeds whole. (The taste of the seeds is not great — another incentive to grind and make into pills!)

Please note that I am not a doctor — and that I am giving information about what works for me, personally. If this intrigues you, first go to WorldWithoutCancer.uk.org and learn all you can about it.   I wholly recommend that you research and try things for yourself — carefully and safely.  Not to mention seeking out the advice of a health care practitioner who is familiar with vitamin B17.  I found my doctor on cancure.org.  He isn’t local — but I think it was well worth the trip!

CLL and Green Tea

Green Tea for CLL
You can drink green tea for health benefits, but therapeutic use requires a green tea extract, taken as a supplement.

There is a lot of literature out there about CLL leukemia and green tea.  Go ahead and Google “CLL green tea” and you will come up with pages of references.  Green tea is supposed to halt the progression of CLL and, in some cases, improve symptoms.  That’s wonderful.  The good part of this is that it’s a food item (when taken as tea) and a food extract when taken as a supplement.  If you’re interested in a good quality, green tea extract, go to Life Extension.

Do I use it?  Yes and no.  I do drink green tea, practically every day. But not in therapeutic doses.  That’s because, in my case, my platelet count dropped noticeably each time I tried it at recommended levels.  Worse yet, there was no discernible benefit.  The studies I’ve looked up indicate that green tea does, in fact, affect the “aggregation” or clumping together of platelets — a good thing for people with heart disease.  While I can find no literature to back up my experience, it is what it is.  I do reserve the right to try green tea in therapeutic doses (beverage AND supplements) in the future.  But for now, I’m sticking to my already very-full and somewhat complicated program for good health.

If you want more information, you might take a look at the Mayo Clinic study in progress till March 2011.