CLL Alternatives

CLL: My Personal 20th Anniversary

Posted by: Denise on: July 9, 2021

If pigs could fly…or maybe elephants. Here I am
with one of my six grandkids, having a grand time in the air via a pink elephant!

Celebrating My 20 Year Anniversary of CLL

I remember vividly when I was first diagnosed with CLL at age 46. It was July 2001, shortly before our national disaster. At the time, my brand-new oncologist told me that if I was lucky, I might even live for twenty years. Well, I guess I’m lucky, because here I am. And while CLL has definitely been a life-changing diagnosis, it has not been a quickly life-ending diagnosis, as I thought at the time. In 2001, chemo was the first line of action. And the research I looked up did not look promising. The researchers congratulated themselves on increasing survival time from 1 year to 18 months, calling that a fifty-percent improvement. Yikes! And the quality of life for those taking that chemo sure didn’t enhance those extra months, I’m sure. So, I was a terrified skeptic.

Of course, not everyone is dealt the same cards. Some people get their CLL diagnosis when they’re way beyond watch and wait (W&W). With impending threat to life, they ignore the stats and take their chances, and who can blame them! But from what I see on Facebook these days, there are a lot of us on W&W, and this gives us options. Better yet, it gives us time. Time to make a plan and to make changes. Better yet, there are many non-chemo treatments on the market today, some of them even advertised on TV. I’m glad they are available, and at the same time I’m grateful I don’t need that as yet.

To be honest, it took me a couple of years to stop feeling sorry for myself and get started on working on my health. I’ve learned a lot, met a lot of wonderful people, and in what I hope will be a short article I will share my experience.

Step 1: Learning about EDS

My husband and I talked with a stranger on a flight home from North Carolina (I’m in Michigan), and she told us about going to an alternative practitioner who did EDS, a form of electronic screening or testing to see what was wrong with you and what you needed to get well. Because of this conversation, I went to Ellen, a local nutritionist and alternative practitioner. I didn’t much like or believe in the testing. It was way too woo-woo for my taste. But she did suggest that I had a yeast problem, and further that I had to give up bread and all sugars (and my beloved Slurpees. (7Eleven’s frozen Cokes for those who are unaware). I obviously looked horrified as she said I should do that for a week and return.

Here’s where it gets dicey. She tested me again and said I took care of the yeast. Yes, in one week. But now she could see that I had parasites and needed some of her parasite killer bottles of supplements. I declined, and probably went home for a Slurpee. And a sandwich, and maybe a frozen fudge bar. But here’s the kicker. I had no idea that I would eventually be on a much stricter diet than suggested by Ellen. Today I am sugar-free, gluten-free, dairy-free, and worst of all…low oxalate. It’s a miracle I can find something to eat, but as I’m constantly watching my weight, I guess I’ve been able to meet that challenge. 😊

Step 2: Searching for a Cure

I went to various alternative doctors in Metro Detroit, looking for someone who could guide me to good health. Okay, let’s be honest, I was looking for a cure and willing to do just about anything to get there. None of these doctors provided that golden ticket, but one of them sold books in her waiting room. That was where I came across my first helpful book. I’m sorry but I don’t remember the title OR author, and can’t find it in my house. (My husband now uses books to prop things up on occasion, as I mostly read on my Kindle. If I come across it eventually, I will update this post at that time.) The point of this book was that you could ‘control’ cancer with diet and lifestyle. The start of the book recounted a sign in a wildlife park, “Don’t feed the animals,” the reason being the potato chips and twinkies were bad for their health…and therefore, what about us? To this point, at my hematologist’s word, I was still eating what I thought was a healthy diet. The fact that it included frozen Cokes and ice cream cones (quite regularly) hadn’t changed my opinion of my diet. This is where I started to make change.

Step 3: EMF Remediation

In late 2004, my husband was in the local library, reading a natural health magazine. There was an article about EMFs and it’s affect on health, as well as an ad for an EMF detector (gauss meter). We bought one. I started measuring. It turned out that our bedroom (in which we’d slept for 20 years) measured an average of 7mG (milligauss). The WHO (World Health Organization) at the time listed safe levels at anything under 2mG! We measured again with our electric meter box shut down in the basement. It didn’t have ANY effect on the milligauss reading in our bedroom! Creepier yet, the higher you held the Gauss Meter to the ceiling toward the back of the room (closest to the powerline, just about eight feet from our bedroom), the higher the reading. My husband and I didn’t sleep well that night and moved into a guest room.

Long story short, it took five months to remediate the issue. Detroit Edison (now DTE) did not take me seriously at first, but eventually revealed that they had an EMF department! That alone was no help. The EMF department’s goal was to make me feel like a fool. They didn’t talk about danger, but instead about my “comfort” level, like I was a lunatic. For the full story, see my other website,

Step 4: Macrobiotics

 Despite my new and improved “anti-cancer diet” (my words), my WBC persisted in climbing. Keep in mind that I was now eating store-bought organic cookies topped with sweetened yogurt. I had a long way to go, but at least I was on the path. There wasn’t much encouragement on the Internet just yet. At the time, a Google search for “cure CLL” (or something like that) brought up a lot of depressing information about chemo treatments and life expectancy. Or, worse yet, end-of-life planning. So I went to the bookstore and started searching for books. I might have even bought some online. One favorite was, I Beat Cancer: 50 People Tell You How They Did It. That led to many other books about the Gerson diet, the Breuss cure, and others. But the one that stood out, spoke to me, if you will, was The Macrobiotic Way, by Michio Kushi, which led to a trip to Western Massachusetts, to the now-defunct Kushi Institute for a week of intensive study of the macrobiotic way, which includes diet, exercise, and lifestyle.

I was on the healing diet for nearly two and a half years. I saw the most improvement in the first month. But at the end of two years, my WBC started to climb back up. Worse yet, I was diagnosed with both anemia and osteoporosis/osteopenia. I started adding animal protein and smoothies to my diet. To this day, both the anemia and osteoporosis remain a challenge. Although I eventually left the diet, many of the principles remain. I eat mostly organic vegetables. I don’t cook at high heat. I don’t have white sugar or white noodles (or any noodles for that matter), I wield a large knife against my wooden cutting board in the kitchen. Even in non-Covid times, I rarely eat out, and buy a minimum of processed foods. I am mindful of my stress level and strive to be calm. My husband had noticed my change of personality. I’m no shrinking violet (I’m not shy!) but I rarely agonize about things over which I have zero control.

Step 5: Laetrile

While I don’t believe that vitamin B-17 (amygdalin, laetrile) is a magic bullet, I consider it to be one of the many pillars holding up my health. But in 2007, I didn’t take it lightly. I’d read Dr. Phillip Binzel’s book, Alive and Well: One Doctor’s Experience with Nutrition in the Treatment of Cancer Patients. This book gave the stories of patients of his that had survived cancer via (in his opinion) the use of B-17. I was thrilled to read that one of the patients had CLL. Like a detective, I tracked her down, and unfortunately, I was able to speak only to her husband as she’d recently passed away. Of course this was sad, and discouraging, but I spoke with her husband at length. He felt certain that her life had been prolonged by Dr. Binzel and his protocol. He also admitted that while his wife took the B-17 and even had it via IV treatment, she found it hard to stick to the diet. Given their experience, I felt this was worth pursuing. Time for another road trip.

My husband and I drove east again, this time to Suffern, New York, to the Schachter Center, where we met with Dr. Jeffrey Kopelson. I’m sorry to say that he died several years ago, suddenly, from a heart attack. While I wanted to have B-17 via IV treatment, he advised against it, as it requires many visits and would have been useless during our three-day stay. Instead, he advised taking 500 mg, 3X/day, starting with one pill a day and working my way up to the full dose. I’ve been taking it ever since, and order mostly from I’ve heard good things about ApricotPower as well. Read more HERE about how Laetrile works.

Step 6: Ultraviolet Blood Irradiation

This was probably my most exotic treatment to date. I found a doctor about an hour and half away, near my alma mater, Michigan State University, in East Lansing. At first, I went three times a week, then two, then once a week, then every other. The process is that a technician inserts an IV needle and withdraws a pint of blood into a glass container. Your blood is then returned to your body, via that same IV, once it’s gone through an ultraviolet light machine they have for this purpose. It was painless (except for the first poke) and relaxing, and I met many other interesting cancer patients. I eventually stopped after examining my lab chart. I keep my own spreadsheet. I determined that while I was no worse, I was no better. It wasn’t worth the time and expense. This was my experience, and I know that this works well for other people. So please don’t be discouraged if you’re considering IVBI therapy. It’s definitely worth a try.

Step 7: Patient Heal Thyself

One thing I learned about going for the IVBI treatment was that I didn’t have to go to my hematologist for blood work. As I was so frequently going to E. Lansing, where they were drawing blood anyway, I’d gotten into the habit of getting my CBCs done there. It was so much less stressful than a trip to the hematologist where you had to see the people getting chemo while you waited for your blood draw. I used to dread those visits.

But it was a nuisance to go all the way to East Lansing. My son, then a nutritionist, suggested that I use DirectLabs. You go online and order up your tests. The cost is out of pocket, of course, but not much more than the copays I had at the time. You receive a voucher and locate a participating blood draw location. Today I use Quest locations but have used Labcorp in the past. Your results are emailed directly to you. I don’t recommend this if you’re not familiar with reading your own lab results. Or if you feel the need and reassurance of a medical professional. I do a mixture of both. I see a doctor once a year, and get blood draws every three months. It’s been working for me. I don’t like to be surprised and this keeps me in tune to what’s happening with my body as I continue with my diet and with often changing up supplements. It’s a good idea to check with your doctor to make certain that this is a good plan for you.

Step 8: Living with CLL

There are many with CLL who have reported that they have been totally healed from CLL via natural means. I’ve spoken with three of them, all men. I’ve read about two more. This is wonderful and an inspiration to all of us. It can be done! There is a path, but it is our job to find it. Unfortunately, this has not been my experience. I still most definitely have the diagnosis of CLL. Every blood test proves it.

However, and this is a big however, in some ways it doesn’t matter. I’ve changed up my lifestyle and my diet. I’m ever watchful of my lab work. I eat virtually zero processed foods and nothing (zip,zero,nada) foods made with white sugar. Ever. It’s not even that big of a challenge anymore. It’s just the way I live. But while I’ve been working on this, wonderful things have happened.  I’m still here and living my life. I’m still working. I’m still writing and even drawing and illustrating these days. Best of all, I’m still here with my husband and two sons and their families. And as you’ve probably seen, we’ve had six little additions to the family over the last eight years. Six grandchildren! Such an unbelievable blessing! I am grateful every day. If anything has been worth all the work, and all the work to come, it would be this.

Step 9: Sharing

I really left out a step. I believe that it was in 2011 that I started my web site, I was worried that I would depress the hell out of people if I died and therefore stopped writing. But it’s been nine years since then, and here I am. Sharing has enabled me to meet and enjoy the friendship of countless CLL Buddies. I keep in touch with people from Ann Arbor (45 minutes away) to London, Spain, Canada, Washington, D.C., New York, California and Florida. There are so many more! Some of these contacts have been fleeting. Many of you I consider to be friends. We are all bound by this terrible and shocking diagnosis that turns into something we can live with. I truly love you all!

As usual, I’m thinking of many more things I could say, but this is long enough. I hope you are inspired to keep on keeping on. Keep up your diet, your lifestyle. Keep testing out supplements and make changes as your health dictates.  Check in with your doctor, but also remember that you are the final decision maker of your own health.

Wishing you all the best of health and happiness! – Denise

9 Responses to "CLL: My Personal 20th Anniversary"

Any info positive or negative about coffee enemas? I use them to help with depression but don’t want to do anything that will make CLL/SLL worse.
Any guidance greatly appreciated.

I wish I had definitive information for you. I can only tell you what I know. I did try them myself many years ago. They didn’t have any effect, so I discontinued. For me, because it didn’t make a difference so they weren’t worth the effort. That said, I’ve communicated with CLL buddies who did use this and DID find it effective. My personal trick is to get your blood tested every three months. If my doctor doesn’t comply, I order my own tests on With the blood tests you can keep score, and I beleive that 3 months is enough time to determine if what you’re doing is working. If it improves your health, makes it worse, or has no effect at all. It’s interesting that you say it helps with depression. I’ve not heard of that. If anyone is reading this and wants to try this, be sure to let the coffee cool sufficently before using. This is obviously, but can be a painful mistake.

So back to your original question, I don’t think it’s harmful. Unfortunately, there is not one set answer for any of the alternatives (or for the conventional treatments, for that matter). We’re all different. So it’s best to try and test, try and test. Please share if you find it to make a positive difference. Every time we share, it helps other people who find this site.

All best, Denise

Hi Denise,
As always, you have been and continue to be an inspiration to me. Thank you for this post, and like all your posts, it keeps me focused or back in line. I wish you many more wonderful and healthful years to come. I pray that in 11 more years my story can be as great as yours. Thank you.

Hi Nathalie,
I really appreciate your kind words. You’ve been at this a long time yourself, and I’m sure you’re an inspiration to others as well.In these times when the pharmaceutical companies want us to believe that their products are the only road to health, it turns out that clean air, clean water, clean food, good sleep, and what is probably way too many supplements, is the way to health, at least for me. I’m glad you are on this journey with me! Thanks for writing.
All always,

You should never stop posting because I do not use Fb or any other social media really and I know however it is time consuming but I do stay on top of any natural oriented health protocol. I am a firm believer that lifestyle change is a must to stay healthy with CLL…eat nothing white, except cauliflower 🙂 (making a point here). I used to do well with the cottage cheese mixture but my stomach can no longer tolerate it so I adjusted a couple years ago. As you say, it is a journey and at this stage I’ve had to refocus and regroup several times. This month’s WBC is 19.5 and I’ve been as high as 31 so I’ve been hovering between mid and high teens the last two years and I’m grateful. I appreciate your blog so much as it continues to inspire me. I always get excited when I see a new post. Hope we can catch up some time. Stay well.

Hello Denise,
Just read your article about your 20th anniversary Congratulations! Are you still writing now in 2022?
I’m just at the beginning of the journey. My annual mammogram showed some slightly enlarged lymph glands. That lead to biopsy and blood tests which pointed to CLL but I think Ctscan this week will likely decide.
If that’s the case I’ll get started on some of the things recommended here. I’m a ice cream lover too. Looking forward to your posts.
Wishing you continued good health and grandchildren joy!

Hello Diane,
I’m still here, just not posting as much these days. There’s so much information out there on Facebook, etc., that I’m not sure I’m still needed here. That said, what I write about is my experience and my views, which can be helpful, particularly for someone recently diagnosed. I’m still doing well, despite a nasty case of Covid. I haven’t reread the article I wrote, but I can tell you I’m still here, and still going strong. I’ve even stopped wearing a mask all the time as I’ve had two colds and recovered well since Covid. If you get CLL news, please write again and I’ll be glad to help. If you get better news, hurray! (But you should still cut out sugar and highly processed foods with unintelligible ingredients on the label. These are all killers.) We should all learn from our scares! I’ve had my fair share. I’d love to here from you again either way.
Wishing you the very best! – Denise

PS It’s been so many years since ice cream. I used to miss it, and later miss the event of going to an ice cream store. Now…I love my smoothies with frozen fruit and protein powder and a touch of kale, tastes as good as ice cream, maybe better, as I’ve lost my taste for sugar. It can happen. 🙂

Congratulations on your journey. Really happy to read your blog and posts.

Can you please let me know if you are IgHV mutated or unmated? What about other blood marker status?

I wish and hope all of us can remain in wait and watch and not get into treatment

Hi Ishwar,
Thank you for the good wishes, and apologies for taking so long to respond. I get so much spam, that sometimes a legitimate comment gets ignore. My short answer to your question is that I don’t know. I’ve been at this for a long time. By the time they were using certain markers as a predictive tool, I’d been doing okay for a while and didn’t want to jinx it by finding out that my markers were bad. I more than believe that my diet/lifestyle/supplements keep me alive and well. Why? For a long time, despite all efforts, my WBC was climbing. The highest was about 47, but it was a continuous climb and I was young(er). At some point, before January 2013, I started taking high doses of vitamin D (10,000 IU/day) and also stopped eating anything burnt. Finally, finally, my WBC dropped and miraculously my RBC did not drop with it. That was my experience. I don’t take as much vit D any longer, but I do take enough to keep my vitamin D Hydroxy test at 70 or higher. I also avoid burnt foods, meats in particular, but all of them. I also take a boatload of other supplements for the CLL as well as for other issues (I’m 66 now, and we all have “issues’ by this age).

So, I’m in watch and wait, although I now think of it as Watch and Act. Meaning that I would first concentrate on changes I could make before I’d consider any pharmaceutical based treatment. I wouldn’t turn it down if I felt my life depended on it, but I’m happy to keep living my life proactively.

Sorry again for the 3 month delay. The mistake is all mine. I hope you’re doing well. Please write again and I will be more vigilant!
All best, Denise

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