CLL Alternatives

Liposomal Vitamin C and CLL

Posted by: Denise on: July 15, 2014

Chronic lymphocytic leukemia and lyposomal vitamin C.

Lyposomal Vitamin C and CLL — Works for Some

Question:
Have you heard of vitamin C treatment for CLL?

Answer:
I have suggestions for you as I’ve recently come across another product that just might help you. It’s liposomal vitamin C. So far, I’ve just started it myself and have no data to share with you as yet (although I have “herxed”with bone and joint pain, ironically encouraging : )   I’ve been intending to post about it, but I think I’ve been waiting till I have my own results.  But here is why I’m encouraged:

One farmer in New Zealand had H1N1 AND HCL (hairy cell leukemia). He was treated in the hospital with vitamin C IV and this saved him death (they’d been ready to pull him off life support). After the IVs became less available, he started taking the liposomal C.  Not only did he fully recover from the H1N1, he now has zero sign of the HCL. Here is the video about this man and his story:(the first is a full version, the second link is to a shortened version)

 A new practitioner I started seeing late last year has suggested that I take liposomal Vit C.  She suggested taking 1 packet for 3 days, and then to work myself up to 15 packets a day and hold for two weeks. I think that may be too many.  I may top out at 5 or 6.  While I was ruminating on this, I received an email, like yours, from a man asking about LDN for his father who has CLL.  This man told me that his father was doing pretty well taking Life Force green drink and liposomal C.  Okay, I now felt like I was getting messages from the universe. : )

So I communicated with Todd who later told me that his father’s WBC dropped from 70 (70,000) to 9 (9,000) from the protocol of the Life Force and the Liposomal C.  Now there are two people with a chronic leukemia who’ve benefited from liposomal C.  So I’ve started this protocol for myself.  Here is a link to the company that makes this product.

CLL Lymph Glands Swelling — Reason for Panic?

Posted by: Denise on: April 17, 2014

Question:
I would like to know how your lymph glands react, if that’s ok. When I was first diagnosed there were no signs of enlarged glands, but on my last check up a few pea-sized enlargements were detected in my neck and right groin.  I did however come down with a pretty bad cold the very next day.  Are they likely to go up and down?

Answer:

Yes, I have the pea-sized nodes and I’ve had them since diagnosed. I also have one large CLL node in my neck, thank God it’s not visible! However it’s there; it goes up and down, as do my swollen glands. Here is what works best for me in reducing pressure in my neck when ill.

1. I get plenty of rest by going to bed early. Years ago, I stopped worrying about the CLL being lethal and voila! I sleep better. When I wake in the morning 99% of the time, the glands are down and I can barely find the large node. (I never look/feel for the small ones; maybe they’re not even there any more.)

2.If the pressure in my neck and sometimes across the bridge of my nose persists, I clean out my ears with Debrox ear drops. I follow the instructions on the box for a few days and this generally does the trick. Debrox is in all regular drug stores, not an exotic product.

Oh, and your cold probably had a lot to do with it. An important thought: don’t stress about it! The first word in CLL is “chronic” not “lethal”.  So believe that it is temporary, because it most likely is. Take a deep breath and distract yourself with something pleasant. Believe that you are well, because at this moment, you are!

 

 

CLL and Supplements: Safety and Do They Work?

Posted by: Denise on: April 15, 2014

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

Posted by: Denise on: February 16, 2014

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 Low Neutrophils ~ An Alternative that Works!

Posted by: Denise on: January 28, 2014

peakimmune1

I’ve been using Peak Immune off and on now since 2011 and I have to tell you that it works! Yes, I still carry the CLL diagnosis, but… if your neutrophils dip into dangerous territory, which mine do without the help of Peak Immune, then you are a prime case for starting conventional therapy. A low neutrophil count can be fatal.  So this is a very important blood marker.  In some ways, it’s like I’ve done a double blind on myself. What happened is this:

In May 2011 my hematologist told me that my neutrophils were dangerously low, at just about the .5 mark. The normal range for neutrophils is 1.96 – 9.72. We’re talking the ‘absolute’ neutrophil count, not the percentage. Don’t worry about the percentage! If you have a CLL diagnosis, that number will be well below normal and you can be functioning just fine. My hematologist (who I like) wanted me to try Rituxan, and some Neupogen. She knows that I’m a researcher, so we decided to wait for the next visit. At the first revisit, the count had gone back up on its own. At the two-month revisit I hadn’t taken anything as yet, and the neutrophil count dropped dangerously low–down to .59.

My doctor was genuinely worried about me. A person with a very low neutrophil count is susceptible to disease and illness and has little to fight it off. However, I was NOT interested in either of her choices. Rituxan is a monoclonal antibody that has worked in conjunction with chemo. I saw it as a gateway drug to hell. Neupogen is NOT a chemo. However, it is a drug for life, as once you take it, your body stops producing its own neutrophils and you become dependent upon it. Add to that that Neupogen is self-injected into the abdomen, and I was thinking—and saying—“no thank you!”

So back in 2011, at this time I took the Peak Immune product, as it was recommended by a Chinese herbalist, and because on the bottle it says that these pills increases NK (natural killer) cell activity. I thought that would have to be good enough and it was definitely worth a try. But it turns out that Peak Immune increased my neutrophil count. At the next blood test, my absolute neutrophil numbers went out of the danger territory and my percentage went up as well. After I finished a bottle or two, I figured that I was out of the woods and didn’t need the product any longer. After all, I was taking UBI (ultra-violet blood irradiation treatments) and keeping up with an extraordinarily healthy diet and lifestyle.

I did pretty well with my neutrophils after that, taking regular blood tests to keep track. However, in February of 2013 the count was right back down to .51. I panicked. I hadn’t given the Peak Immune the credit it deserved for keeping up the neutrophil count. But for some reason, I looked it up on iherb.com to see if anyone else had mentioned neutrophil counts in the reviews. There was only one review and it was very positive on this very subject! I was so excited. I thought it sounded familiar and I saw that the reviewer was from Michigan. Then in a complete airhead moment, I realized that that one reviewer was me! I had given credit to Peak Immune for helping with my neutrophil count, and posted it online. But I had forgotten this for myself!

Needless to say, I’ve been taking this product ever since, and thankfully my neutrophil count is in the safe target zone still. This is obviously not a cure, but it is a health and life-preserver. I give this pill my ultimate personal endorsement. And please keep in mind that I sell absolutely nothing on this site and get nothing from any company. Feel free to comparison shop on amazon and any other outlet.

Oh, and please write and let me know if it works for you!

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Another CLL Success Story!

Posted by: Denise on: October 9, 2013

I apologize for not posting more often. Now and again I get emails asking if I’m still here–as in alive. Yes! I’m very much alive and relatively well. By relatively, I mostly mean my parents, both of whom are geriatric (82 and 87) and both of whom are ill (congestive heart failure and stroke) and are more time-consuming than I’d like. Between that and part-time work, and an occasional foray into writing my second mystery book, I just don’t make time for this blog.  This is a GOOD reason to be offline, however, compared to what other CLL-ers imagine.

But enough of the introduction. I’m writing because one of you (by “you” I mean one of the many CLL-ers who have contacted me via email) sent me this link: David Lingle’s CLL Healing Story

And here is the video itself:

This is very exciting! Every success story is exciting. It means that it is possible to beat this thing naturally. However…keep in mind that not everyone heals the same way. This is true when the conventional doctors give chemo (some will go into remission, some will not, some will die from the treatment), as it is with natural treatments. The only difference is that with natural treatment, it may not cure you, but it will probably make you healthier.

As I listened to the video, I noted that David Lingle, the man who is now CLL-free, is mostly vegan. Don’t think I want to do that again. It wasn’t so good for me.  When I was macrobiotic for many years I developed both osteoporosis AND anemia. I am now a raw food enthusiast…AND I include slow-cooked organic animal protein as well. I’m not cured. However, I’m doing relatively well. (I’m always as good as my last blood test. It isn’t easy, but most of the time I try to stick to my program and ignore an upcoming blood test. It’s better on the psyche.)

Even if I don’t plan on following this man’s whole program, I’m encouraged to see that he uses an infrared sauna. I’ve been considering that for a long time. I’ve heard from several of you that this helps. Please watch this and see whether this provides hope, inspiration and practical suggestions for your own recovery and good health.

 

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CLL Update August 29, 2012

Posted by: Denise on: 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

CLL Green Tea and Neem

Posted by: Denise on: October 7, 2011

It’s been a long time since I last posted.  There have been a lot of bumps on the road, and I haven’t felt much like it.  I’m still dealing with those bumps, that came in the form first of dangerously low neutrophils, (they’re still low, but not “dangerously”) and now, at my last visit, my WBC happily dropped 13.6 points to 34.2 (yay), but so did my RBC (3.3 to 2.88 – boo) and my HGB  went from a healthy 12.3 to a very concerning 10.4.  Yikes.  That’s been the way it’s been for me.  The white and red counts always go in the same direction — and they’re supposed to go in opposites.  Oh well.

Good News In CLL Land
That said, there is still good news out in CLL land and I haven’t been reporting on it.  First, I’ve found another person who’s doing well with Green Tea and Neem.  Here is a link to his testimony. I’ve been trying to contact him directly, as is my custom, and so far, no luck.  But isn’t his information exciting?  For those of you who prefer not to click, (I LOVE clicking myself), here is his info:

QUOTE: “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.

It’s 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 don’t 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. ”

Posted on DailyStrength.org 08/26/11, 12:31 pm (go to link above to go to that web site) UNQUOTE
Reading his post caused me to look up new items — both Neem and Carnivora.  And I didn’t even tell you about what I’ve done since March — both Chinese Herbs and UVBI (ultraviolet blood irradiation).  But these all deserve a different post on a different day.  One thing that I’m convinced of, is despite the difficulties with the FDA, which seems intent on stopping anything helpful AND harmless, there always appears to be more out there that can help us get well from CLL!  As always, do research on your own, and try these pills carefully.  I already gave myself a twenty-four hour belly ache from downing too many green tea pills to start.  Now I have to start all over.  So read, review, and proceed with caution.

 

 

 

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Apricot Seeds and CLL Leukemia

Posted by: Denise on: February 9, 2011

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!

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CLL and Green Tea

Posted by: Denise on: January 31, 2011

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.

 

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