Tag: CLL Leukemia

CLL: My Personal 20th Anniversary

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, EMFDamage.com.

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 TJSupply.com. 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, CLLAlternatives.com. 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

CLL and Covid 19: A Personal Story

After posting all kinds of pretty valid, but ultimately useless advice on how to prevent Covid 19, I caught it. Here is, briefly I hope, my Covid-19 timeline.

October 23, 2020:

My husband left work early with cold symptoms. It is a family business and our son is the general manager, and told my husband that not only did he need to go home (as would any employee) but that he had to get tested. So he did, with the 15-minute test. It turned out he tested positive, and by that evening he ran a 103-degree fever. Our two sons wanted me to go to our cottage (45 minutes away) and quarantine there without my husband. At the time, so suddenly, he was bedridden and too ill to look after himself. I couldn’t leave him. So I very carefully started our homebound isolation. He was already in the guest room, as soon as he came home with the positive diagnosis. I moved all his bathroom items into a separate bathroom as well, aired out the remainder of the house and wiped everything down with Clorox wipes. Initially, he only ate what I brought to his room onto a TV table I’d brought up from the basement. Once he could leave bed, we both wore masks and never stayed in the same room. I would air and wipe down any room he’d been in, which included only the kitchen or the home office. It was difficult, tedious and lonely, but I persisted.

October 30 – November 13, 2020

Eight days later, I figured I was going to beat this and not catch the virus. Ha! On the ninth day, I started to have symptoms of an upper respiratory illness. But I was okay, and kept working remotely with my laptop in the family room (the office was taken up by hubby). I did develop a cough, but it wasn’t anything to write home about. Then came the loss of taste and smell, along with loss also of appetite. It’s hard to eat when food has only texture. I forced myself to eat at least a little bit. I was diagnosed November 1. By the following weekend, I’d been advised to sleep on my stomach to avoid pneumonia. It was either this sleep position, or the cough, that created a horrific back ache. By November 9, I called my husband (who was now back at work, totally recovered) to come home as it was hard for me to function as I was terrified to cough for fear of the pain that shot through my body like jolts, with each cough. He came home and insisted we go to the hospital. We went. After a chest x-ray and a quick examination, I was given a 600mg Motrin and sent home.

I spent the next five days living on Motrin, taking as much as I could, according to the bottle (6/day, max) My body stopped coughing. I would feel the urge, but my body stopped the impulse. It was not intentional, but a response to the pain reflex. I took my temperature and oxygen reading several times a day. I’d not yet spiked any fever, but my oxygen level was slowly dropping.

November 14, 2020

By Saturday evening, the 14th of November, when my husband came home from work, my oxygen level was 77. Time to go to the hospital again. This time, they admitted me. The weird thing is that I almost immediately spiked a fever, right in the ER. I know it was in the 100s, but I was too spaced out to recollect for certain. They left me lying on the exam table for hours, as I waited for an available room. I was in terrible pain from my back, making it very hard to lay on the exam table, but the staff was more concerned about the Covid, understandably, and pretty much ignored my pain. Later that night, I was escorted up to my room where I would be oxygenated and poked till the following Friday when, thank you God, I was released.

My hospital stay was difficult. No visitors allowed, which while understandable, made it hard for both me and my husband. I did keep my cellphone charged, but I could speak for two to three minutes before I would get exhausted from the effort. I could also text, but that, too, was a challenge. TV was boring, which was a good thing, as it meant to me that I wasn’t doing that bad, or I’d just be sleeping. There was no special treatment available, as (in my opinion) all emphasis has been on vaccinating. There was no hydrochloroquine, no ivermectin, no regeneron, no convalenscent antibodies (several friends who’d had Covid volunteered, but it didn’t work that way). All that was available was steroids. Thankfully, the famous (or infamous) ventilators were no longer used as quickly as they were a year ago. They did give me an immunoglobulin infusion, and that apparently helped. As I had the infusion on a Wednesday, and was released the following Friday afternoon.

It took about two weeks till I was functioning normally. It was hard for me to walk, not only from the pain (diagnosed in the hospital via my husband’s remote pleading) as a fracture of my L4 vertebrae (low in the small of the back). Now it is March 11 as I write this, and I’m (finally!) 99% better. I will give bullet points so as not to bore you with an even longer story.

What I did to prevent getting Covid

What I did to treat Covid

               At home: two different antibiotics, Motrin, nebulized hydrogen peroxide (food grade), nebulized cortisone, supplements: beta glucan/lysine, zinc, quercetin, plus all the others I normally take.

               In hospital: steroids via IV, eventually immunoglobulin via IV, and for pain: pain patches every 12 hours, and Tylenol.

Medical Issues since hospital discharge:

  • Horrific Acid Reflux. This was so bad I walked the neighborhood at night to try and recover. This was part of the steroid withdrawal, and lasted just one night. Thankfully!
  • Palpitations and swollen ankles, weight loss. Fearing I was experiencing a new heart condition brought on by Covid, I saw a cardiologist who assured me my heart was fine. Blood tests revealed signs of hyperthyroidism. A visit to an endocrinologist a month later indicated this was a temporary condition brought on by either the steroid use or the Covid itself.
  • Back ache persisted. At first, so debilitated from Covid and hospital stay, I had a home visiting nurse and physical therapist. Now I’m nearing the end of my second round of physical therapy, this time in the same building as my orthopedic doctor.

My conclusion:

  1. All the things I do to keep myself healthy for CLL helped me survive my Covid ordeal (although it didn’t seem so when I was in the middle of it, especially while hospitalized.)
  2. I believe I worsened in the hospital because I was not allowed to take all my immune-enhancing supplements.
  3. I was tested and do have the antibodies for Covid.
  4. It is my choice, at this time, to let others who are more eager than I to get the coronavirus vaccine, in any form. I don’t agree that natural antibodies are any less viable than those created by a new vaccine, so I will go with Mother Nature at this time.
  5. Should I go with a vaccine in the future, I haven’t researched thoroughly, but my inclination would be, given a choice, to have the Johnson and Johnson, as it is less experimental. But again, I prefer to wait until I see data about this.

I’m not certain what I can suggest. This was my experience, and if it helps you, or gives you hope that you can survive should you get the infection, that’s a good thing. It’s not good to live in fear. I wish you life. I wish you good health and hoping we can all get back to normal sometime this year.

– Denise

CLL DIY treatment

How long do I have to do this!

When I first started trying to treat my CLL naturally, as a DIY project at home, I was still thinking in conventional medical terms. In my mid-forties, I was working towards a CURE, after which I could return to my NORMAL life. (Yes, I’m yelling; there was a lot of passion at that time.) My normal life was seductive, filled with coffee houses, chocolate cake, frozen Cokes, and frequent ice cream cones. I wasn’t fat or food obsessed, but that was my life and I liked it, thank you very much. I was also fond of not worrying about dying young and leaving my sons and husband behind. It was a very bleak time.

CLL as a DIY project. So after a long period of fear and self pity, I started working on my health. Initially, I felt that it was futile.  Locking the barn door after the horse was already stolen. Damage done. DNA ruined. Nothing I could do but watch and wait for the inevitable. I remember going to a local nutritionist/homeopathist who did one of the electronic tests and told me I had a yeast problem and that I needed to go on the yeast diet. This meant no sugar, no bread, no cookies, no frozen Cokes. All the goodies. I was a bit like an addict. I told her I could do it for 5 days, that was it. And I meant it. 

The Anti-Yeast Diet. I was true to my word and I stuck to this seemingly hideous diet for five miserable days. After that, I did, over time give up my precious frozen cokes and ice cream cones. I started buying organic cookies and slathered them with organic yogurt. Okay, I wasn’t there quite yet. The point is that I wanted an end game. And there really isn’t an end game.

The Macrobiotic Diet. Fast forward to 2005. After four years of a CLL diagnosis, my WBC had climbed to the low 20s, which at the time totally freaked me out. So after some research on the Internet, my husband and I packed our bags and drove to the Kushi Institute in western Massachusetts to learn macrobiotics. I was going to CURE myself with this diet, and then I could return to NORMAL. The macrobiotic diet was even more stringent than that hideous yeast diet. It consisted of beans, greens, brown rice and seaweed, with a weekly treat of white fish. It allowed for tempeh, tofu, sauerkraut and seasonings, one whole tablespoon a day of olive oil (no other fats) and lots and lots of kombucha tea. 

After one month of trying it at home prior to our Kushi visit, I lost about 10 pounds and my WBC had returned to 14, where it was at diagnosis. This is why I expected a CURE. I stuck to the healing diet for nearly two and a half years. I was extremely thin. I was waiting to improve those numbers, to get back to NORMAL so I could STOP. (Yes, I’m yelling again, because that’s how I truly felt.) But I didn’t get down to normal. In fact, I stopped the macrobiotic diet at two years and four months because my white count started once again to climb. Also, I was tested and found I had both osteopenia and osteoporosis. And anemia. It was time for a change. 

Reconfiguring my diet. So we got into the car once again, and this time drove to New York where I met with Dr. Kopelson (now deceased) of the Schachter Center (now closed) in Suffern, New York. I returned once again to taking supplements, something not allowed in macrobiotics. I also started juicing, and very slowly started adding eggs, chicken, and fruit. No more tofu or tempeh, yay! (I didn’t like them at all.) But once again, as I started up the supplements, I recall asking the doctor how long I had to do this! Because my goal was still to get CURED, and get back to NORMAL. (Yes, I’m yelling again.)

A (Very) Gradual Turnaround. So when was the big turnaround? When did I realize that this was it? That this WAS my normal? I don’t know. It was a gradual process. I didn’t start writing this blog until 2012, at the urging of my husband who felt that I had a lot to share. “But I’m not cured! I might still die of this and get everyone who reads this all depressed.” But my husband pointed out that it had already been 11 years, and that many newly diagnosed people would still appreciate my words (even if I were to keel over momentarily). Two major factors helped in the turnaround. One was finding out that I had to heal my gut. (Digestive issues had been a life-long problem.) The second was that I could no longer eat food cooked at high temperature. (Burnt food is a known carcinogen that immediate raises our white blood count.) All the efforts put into these two factors, along with my supplements and lifestyle choices, started to turn the course of my CLL markers. It wasn’t one major revelation, or one major pill. It was and still is a process, a continuing process.

The Secret Revealed. Some time after 2012, it finally occurred to me. I had to keep working on my diet and my lifestyle…indefinitely. That’s right. Just like the sign in my dentist’s office: only floss the teeth you want to keep. There you have it. There IS no cure, at least none that I’ve found. There is only management. You have to take the supplements, eat a healthy diet, get exercise and good sleep, drink clean water, breathe clean air, so long as you want to live. Once I got this in my noggin, my attitude changed. No more anxiety about getting cured (CURED!) by a certain date. No more figuring out how to reduce the number of supplements I take (I do take a boatload.) No more dreaming about bumpy cake. Nope. 

Grandchildren and Happiness. The tradeoff is that I no longer worry about my longevity. I’m fairly confident that if I follow the path I’m on that I will continue to be well enough to live my life. So far, I’ve been fortunate enough to see both my sons marry wonderful girls and to become the deliciously happen grandmother of six wonderful uniquely lovable grandchildren. Not too bad for giving up frozen cokes and ice cream. If I’d been given that choice in 2012, I would have been happy to take it.

Forget the Cure and Stay the Course! So if you’re working on a cure, please stop! Once your body has been a host to cancer, that potential is always there. It is your job to make your body as unpleasant for cancer as possible. This means… no sweets, minimal processed foods, minimal fruit, organic clean produce, wild caught fish, free range chicken and beef, and a good working immune system. In short, clean air, clean water, clean food, good nights’ sleep, and regular challenging exercise. Cancer feels unwelcome in such an environment. It is your job, every day, to maintain this inhospitality – and to keep living the good life – your own. 

CLL Covid-19 Update

Denise in her grandkids’ backyard playhouse.

So it’s August 3, 2020, and despite all my expectations, all of us (CLL or not) are still dealing with the COVID-19 pandemic. I have good news to share. While I am still absolutely careful (and “safe”), despite my long-term CLL diagnosis, I’m not nearly as crazed, worried and frightened as I was earlier in the process. Why? There are a few reasons.

Keeping track. I’ve been watching the stats for Michigan, where I live. In fact, we live in one of the “hot spots,” and early in the course of this thing I live close enough to a main street to hear the ambulance sirens wailing on their way to either Beaumont or Providence Hospital. Very unsettling, to say the least. I knew many people who took ill, some who we’d been with socially just about when they’d become infected — two generations of the same family. Thankfully, they’ve all had a full recovery and no hospitalizations.

We are no longer a hot spot. (Yay!) Yes, there are more cases. But I also look at the daily deaths. And daily deaths are way down. I’m sure one of your local stations would have the same where you live. Be sure to click on all three tabs so that you can see the cases, the recoveries, and the deaths. If you look at the accumulated death rate (scroll down to find this), it’s horrible, going up, up, up! But if you look at the daily deaths, you can see that the numbers are way down.

Why is the death rate down? I truly don’t have a definitive answer. We only get the information that is given us. I can make an educated guess. It could be that younger people are among the ill, and they are, as a group, more able to recuperate. It could be we’re better protecting our residents in nursing homes. It could be that the disease itself has mutated and is now less lethal. It could be that we have better treatments that are keeping people from going into that final deadly stage with the cytokine storms we’ve been hearing about. Whatever the case, in southeast Michigan, right here in a former epicenter, we’re doing pretty well. Thank God!

So what am I doing to be safe? (Disclaimer here: this is what I do, and not a blanket recommendation. Consult with your own physician or trusted health professional if you have reservations. Or research it further — which is always a good idea.) Despite these wonderful Michigan indicators, we still have to be careful. Just like we have to be careful all the time, because of our CLL diagnosis. Here is a list:

  1. I wear a mask. I don’t like it, particularly when it acts like summer here, and the temps are in the 90s, along with the attending humidity. I don’t wear it all the time, though. I wear it at work, but only when I have to leave my one-person (me) office and mingle with others.
  2. Disposable gloves. When I go to the market (yes! I go to the market), I wear not only the mask, but also some disposable gloves. I know, I know. “They” have told us not to wear gloves. Sorry! “They” used to tell us not to wear a mask, either. So there. No harm done. I wear some disposable plastic gloves made for sandwich making 🙂 and remove them and my mask, once I return to my car.
  3. Supplements. I’ve added to my boatload of supplements. Time for a list within a list: a.) Quercetin with zinc is supposed to be the next best thing to hydrochloroquine. The recommendation is to take it as soon as you suspect symptoms. I take it prophylactically. Which means I take it all the time, ‘just in case.’ I believe it fortifies me and keeps me from getting ill to begin with. I have no discernible side effects.
    b.) Beta Glucan. Beta glucan with l-lysine. Read the beta glucan article for information about this immune enhancer, which I ‘m now taking regularly. I take the product that includes l-lysine, which is an anti-viral I’ve used before to successfully get rid of cold sores. c.) N-A-C (N-acetylcysteine) Here is an article that includes information about N-A-C, as well as many other helpful supplements. I’ve been taking N-A-C for over a year now to help prevent hearing loss (along with other supplements –ai yi yi, I do take a lot!) It does help for that as well.

Please keep in mind that these supplements are just that…supplements. I still keep to a healthy diet with no added sugar, etc., etc. Get sleep, exercise, clean water, clean air, reduce stress (when possible), and all that other healthy stuff. Read through this blog for more of that.

The bottom line is that I’m treating the pandemic, now, the same way I treat CLL. I take precautions, I stick to them like glue. And then, I just live my life. It feels a lot more normal.

What are you doing to make yourself feel safe during these crazy times? Please write and let me know.

As always, wishing you the very best of health,

Denise

CLL Alternatives Gets Updated Look

I’ve been working on CLLAlternatives since November 2010, and I thought it was time for an updated look! The man you see picture with me is my husband, Peter. I’m sure I’ve mentioned him here and there. But I should mention him a lot. He has been my partner in wellness since I was diagnosed in 2001. He wakes up early to set up our home made chicken soup, sauerkraut, dehydrated kale chips (yum!) and more. Whatever diet restrictions I’ve had over the years (and they have been compounding lately), he sticks to it with me, at least during meals. Let’s just say I really appreciate everything he does. For some weird reason, it seems he wants to keep me alive.

The picture you see was taken by a volunteer at the Marietta Museum of Art and Whimsy, in Sarasota, which I highly recommend if you enjoy smiling. We visited last December. It is, of course, closed at this time because of the pandemic. But this, too, will pass. If you find yourself on the gulf coast, try to make time to go there!

In addition to the site, I’d like to update you on my health. I generally have blood tests every three months. Because of the COVID-19 pandemic, I delayed until just last week for seven full months. While I kept to my diet and supplements, I have to say i was just a little nervous about the results. Fortunately, they weren’t so bad. While I’d always be thrilled to find out that I’ve finally reached full remission (smiley face here), I was pleased to see that I’m still bobbing along in my low 20s WBC. I would prefer the mid-teens, but after all the stress and worry of the pandemic (which is still ongoing!)I think I’m doing okay.

I did put on a few pounds while working from home, despite all efforts. It’s just too easy to migrate over to the kitchen when you’re getting up from the computer. I did manage to take them off with a concentrated effort to STOP EATING sunflower seed butter and rice cakes. Also to cut down on the amount of nuts and fruit that I eat. Yes, you can gain weight eating healthy food. I just proved it! : )

As always, I will TRY to post more often. I hope this format makes it more clear when it was the last time that I posted. A recent and new reader emailed me to ask if I was still walking the planet because she thought I hadn’t posted for a year or so. The last post was March 2020. So while no one is going to accuse me of posting too often, I do try to check in now and then. I did promise a book, but… all the Google and Amazon and Facebook censorship of all things natural health has been really discouraging. I don’t know if you are aware of the NY Times author whose COVID-19 book was taken off Amazon because it wasn’t conventional enough for the Amazon censors. To be fair, it’s up there now, but only because this author has clout. He’s a best seller. Go ahead and buy his book, just to show Amazon what’s what!

Please write and let me know what you think of the new format. Please forgive me for the lack of a book. (I have written a LOT so far, but compiling it all into a book, not so much just yet.) Please let me know if there is a topic of interest that I can post on this site. We have a much better chance of that happening.

I hope this post finds you hanging in there and doing well. I really care about each and every one of you. We are unfortunately bound in a sense of understanding each other because of this CLL thing we’re all dealing with. I wish you good health. I wish you happiness. I wish you peace. – Denise

CLL: Facing the Fear and Loneliness

I just answered an email from a CLL-buddy who is feeling the fear and loneliness of a CLL diagnosis. She does not want to burden her husband by dwelling on her dark thoughts and worries about CLL, and her friends don’t seem to be any comfort. Of course not! This worries them too, and while they wouldn’t say it to her, knowing that a friend has a potentially fatal diagnosis makes them worry about their own lives, as well as about their friend. So what is a person to do? This was my answer to her:

Dear CLL Buddy,
I do understand how difficult it is to keep a happy face on this when you are so frightened. Eventually, you will feel confidence in yourself and in your health, and you won’t feel so frightened. Believe me, you are not alone in having fear of CLL! Here are a few suggestions that have worked for me.

1. Allow yourself to be frightened or upset for only one day at a time, particularly after a blood test that wasn’t what you wanted.

2. Research. The next day, concentrate on the blood marker that concerns you, and start some research on what you can do about it. Look up supplements and herbs. Make a lifestyle change, etc.

3. Have fun! Find time every day to do something you enjoy that is relaxing and gets your mind off of CLL! Read a book, go to a funny movie, visit with a friend (and not talk about CLL) maybe shopping or an art museum or something that you find fun (and gets your mind off the CLL).

4. Find your own personal meditation. I’ve tried meditation tapes (now they would be CDs or better yet, mp3s). This wasn’t for me, but many people find relief in this. My personal meditation is reading novels or writing, or even drawing. I have sketch books, and I find that when I’m sketching, I’m not thinking of anything but the pencil and sketchbook. I lose track of time. It is wonderful! Think back to childhood and what you enjoyed doing that made you lose track of time. Give yourself a gift of figuring this out, and then act on it!

5. Get a good night’s sleep. Make your bedroom light-proof so you can get a good sleep at night and make your own melatonin. Nothing makes you feel better than a good night’s sleep!

6. A new watchword: you are NOT about to explode! Any doctor that would see you today would send you home and then go about his or her business. You are not in imminent danger! Enjoy today! None of us know if there is a tomorrow (we get hit by the bus, etc., who knows?) So why waste today? Enjoy it! It is a gift you are squandering on worry.

7. Recognize that you can gain control of your health. It wasn’t until I became Macrobiotic (ironically, I am no longer macrobiotic, but still…) that I started to see the control I could exert over my CLL diagnosis. After one month of giving up all processed foods back in 2005, my WBC dropped back to 14, where it had been at diagnosis. While I’ve moved on from Macrobiotics, the lesson learned was that I COULD get control of this CLL thing. Since then, I’ve also learned that healing is all about the gut, the digestive system. Work on your digestion and you are working on your health! I’ve not been able to get to where my blood work indicates I’m CLL-free, but I am back in stage zero.

8. Seek out a therapist. If all of this leaves you worried still, see if you can find a therapist. There is nothing to be ashamed of about this. You are facing down your mortality, and we don’t like to do that. It is crazy-making. Back in 2003 or maybe 2004, I was constantly crying with worry and wondering how my boys would grow into manhood without me there. I worried about my husband. I cried about never meeting grandchildren. And see, all those tears were a waste of energy. That said, I DID see a therapist at that time, and it really helped me.

What I learned from him at that time was that I had to take action. Until that point, I felt like I was a victim; I had this CLL diagnosis and I believed it was too late to do anything about it. Damage was done, and I had to accept my fate. Now THAT was crazy! There was so much I could do, but talking to this therapist helped me see it. 

If you continue to be depressed, please find someone who might help. If they make you feel worse, find a different therapist. But do try all the other items above, first.

And I AM here for you. So please write whenever you need to. I do truly understand. I’m wishing you radiant health and a wonderfully happy day! Love, Denise

PS Writing about your worries here, on the site, really helps others. We’re all in this together!

CLL and Intermittent Fasting

Denise and two of “her boys.”

Intermittent fasting has become quite the craze. Google it and you will see countless pages, including many youtube.com videos touting its safety and effectiveness. I agree…to a point. It turns out I’ve been intermittent fasting for years – but didn’t realize it. Does that sound crazy? Let me explain.

Before I started a truly healthy non-SAD (standard American diet), I would be ravenous for breakfast. I remember standing in the shower with true stomach PAIN gripping my being. I would speed dress and run to the kitchen for relief. Yes, relief. I wasn’t just hungry; I was crazy hungry. I believe the reason was sugar, and probably gluten. My standard breakfast at the time was a bowl or two of cereal, sometimes topped with bananas. At the time, I thought it was a pretty darn healthy diet.

Cut out the sugar and enjoy your morning calm. It wasn’t until I read Beating Cancer with Nutrition by Patrick Quillin and started cutting out most processed foods that I felt a difference. This difference became even more pronounced when I went on the Macrobiotic diet as taught by the now-defunct Kushi Institute in Becket, Massachusetts. At the Institute, they had morning exercises prior to breakfast. Before my Quillin-inspired diet, and the fare I was eating at the Institute, there was no way I could have made it through exercise class. I would have hopped in my car in a mad search for a restaurant or a supermarket. But I felt the change. Waiting was no problem, and neither were the gentle stretches and exercise. I’d already begun my Intermittent fasting; I just had no idea that was what I was doing. This was 2005.

I’m already intermittent fasting! In fact, it wasn’t until I recently (this is September 2018) listened to a Nasha Winters youtube.com video that I realized I’m an Intermittent faster! Dr. Winters said that fasting for a mere thirteen hours was enough to prevent breast cancer. Thirteen hours! I generally fast for fifteen! I will explain.

The hours of fasting include sleep. For me, this is about seven hours on a good night. The rule is to not recline or go to bed for at least three hours after eating. No problem. I’m usually done eating by 7:00 pm, and rarely make it to bed by 10:00 pm (even though that’s my target bedtime). Even if I set the clock for 6:00 am, which I generally do, I’m rarely out of the house till 9:00 or 9:30 am, and I let myself have my morning smoothie at 10:00 am or later, when I’m at my desk, ready to work. (I often have some sauerkraut or pickles at about 8:00 am, and a cup of bone broth soup at around 9:00 am. According to the experts, these “treats” don’t count. If you haven’t had sugar or carbs, you are still in IF.) The last time I checked, 7:00 pm till 10:00 am is fifteen hours. And I often go longer than that. Without any struggling.

Is this the reason for my continued good health? The point is that I’m doing well, or at least well enough. I’m seventeen years into this CLL gig, and my numbers are similar to what they were at diagnosis. (Please note: I still most definitely would be diagnosed with CLL if I went to any doctor for the first time. I’m NOT cured, but I certainly am a well and healthy human being!)  The short answer to this question is: yes, but. Yes, it is part of why I’m doing well, but it is most certainly not the only reason. There are also the large issues of diet, supplementation, exercise, sleep, clean water and air, and the general avoidance of toxins.

So how does IF work? Yes, this is an important question. Our bodies are complex and busy machines. We all know that we heal best overnight. When we’ve suffered a cut or minor injury, we often find it at least partially healed in the morning. When we have the flu or other minor illness, there is nothing quite like a good night’s sleep to help us recover. Our bodies are designed to heal. When we are at rest, our internal machinery is busy at work, our immune systems on high alert, clearing out the toxins we’ve come across, kicking out the pathogens (germs), rebuilding damaged tissue, and so on. While it’s not a cure for CLL, it is certainly one of your major pillars of health. It’s a wonderful system, but there is a hitch.

If we’re loaded up with food, the body must divert its energy and attention to plain old garden variety digestion. What a waste of energy and time! This is why it’s vital to stop eating a good three hours or more before bedtime. Your digestive system will have had plenty of time to work on its latest load of nutrients, giving the immune and reparative systems what they need to help heal your body. It’s a beautiful system. Don’t muck it up with late-night snacks.  Water or herbal tea is fine. Stay away from caffeine; your body doesn’t do this repair function nearly as well when you are awake.

Intermittent Fasting Side Effects. It’s all good. IF can improve your heart health, suppress inflammation, fight free radical damage, and more. In general, it’s just plain good for your overall health. While many use this method of eating to lose weight, that has not been my experience. Read more about IF in this article by Dr. Joseph Mercola.

Check out your eating schedule. If you’re already cut out the sugar and glutens, chances are you’re not starved all the time, and eating day and night. You might already be intermittent fasting. It might be that you’re close, but still eating a late-night snack. It’s hard to make those changes. But now that you know about the mechanism of self-repair and healing, perhaps you’ll find it worth your while to try.

[Please note: my husband (who I adore) pushes himself and pushes me to be my best. He nagged me (sorry, but that’s the most accurate word) to keep my hours between 5:00 or 6:00 pm at the latest and 11:00 am or 12:00 noon at the earliest. When I tried to meet this eating schedule I developed stomach issues. To be specific, stomach pain while sleeping that kept me up many nights. It turned out, on self-reflection, that I was rushing through dinner to get enough ‘fasting’ hours in. And I was famished by 11:30 am and didn’t eat slowly or mindfully.  In other words, I was stuffing my face, quickly, all during my ‘feasting’ hours, and it was hurting my health.]

Pay attention to your body. Maybe thirteen hours is your limit. Maybe twelve. The important thing is to go to bed on an empty stomach, and then to delay breakfast for as long as reasonably comfortable.

 

PS: If you wonder why I always post photos of my grandchildren…it’s because when first diagnosed I really didn’t believe I’d live to see weddings, let alone grandchildren. It’s a joy in my life and I’m grateful for my extra years. I wish them for you as well!

 

CLL Green Tea and Neem

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.

 

 

 

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.