CLL Alternatives

CLL and Intermittent Fasting

Posted by: Denise on: September 25, 2018

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: How to Eat

Posted by: Denise on: August 28, 2018

living well with cll

Living well with CLL! The author (in red) and some of the family, 4th of July 2018.

Please notice that the name of this article is not ‘what’ to eat, but how. We all think we know how to eat. After all, we’ve been doing this since birth. But sometimes we need a reminder. Let’s start with a scientific fact. Our immune system is strongly related to our gut, also known as our digestive system. Of course, it matters what you put into that system, that is more than true. But as someone who has struggled with digestive problems pretty much her whole life (at least as much of it that I can recall), there is much more to it than the food.

To explain, let me share my Macrobiotic experience. I was diagnosed at stage zero in 2001. In 2005, I was getting increasingly alarmed at my deteriorating blood markers. My platelets were low. My white count was high, and my hemoglobin and red blood count were also worrying. My husband and I did our due diligence and research, and we came up with Macrobiotics. I went to the book store and loaded up on several Macrobiotic texts and cookbooks. We also decided to make a trip over Labor Day to the Kushi Institute in Beckett, Massachusetts, for a week-long class. I believe it was called The Way to Health. (Please note, while I still eat an organic, whole food, mostly cooked-from-scratch diet, I am no longer technically Macrobiotic. Also, the Kushi Institute still has a web site, but they no longer offer the resident classes.)

The first thing I noticed was how the residents were skeletal thin. And many were missing teeth, which was concerning. But I was fighting leukemia here, and if I had to get thin and lose a few teeth in the process, well, that would be the breaks. As it turns out, I did suffer some gum recession and was about twenty pounds thinner than I am these days, but still it was absolutely worth the experience. I learned so much.

One of the first things I learned was to chew my food thoroughly. To count how many times you chewed, chewing until the food in your mouth was liquid — or as close to liquid as possible. To me, this sounded disgusting. But honestly, there is wisdom in this practice. The more work you consciously put into chewing, the less work your digestive system has in order to process your intake each day. When you chew, saliva mixes with your mouthful, adding digestive enzymes to the mix. Yes, those pills you buy in little bottles are naturally available if you just chew, chew, chew.

I’ve recently gone through a spate of serious stomach aches. I’m talking abdominal pain for a 36 hour stretch. Go to bed with a stomach ache and wake up with the same dull ache emanating somewhere from the left side of my waistline and radiating out to other regions of the digestive tract. I felt hunger but was afraid to eat. My husband was out of town on a business trip. I took to the Internet and looked up stomach pain and CLL, learned that it could be related. Of course, this led to a night of insomnia, keeping me from healing. I’m a strong person, but I sometimes also feel the fear.

When my husband came home, I shared my fears. He reminded me about the chewing. It’s so easy to forget. I started out by making myself meals of vegetable miso soup for breakfast, and chicken soup and rice (home made from the freezer, of course) for lunch. For dinner I had a smoothie. Everything I ate was either stewed or mush. Nothing required much chewing, but I chewed nonetheless. I feel better now, back on my regular diet, and I’m obviously very relieved. I was worried it could be the CLL, or my diverticulosis (or diverticulitis) kicking up. I was worried I might end up in the hospital where they would start running invasive tests and wearing down my immune system. (Conventional medicine saves lives, but you must be a careful and cautious consumer!)

But please take note that my main suggestion here is to chew your food well. Sit down when you eat and focus on enjoying your meal. Put a reasonably-sized helping of whatever you’re eating on your plate. Take a look at your plate before you eat and see if you agree that this is enough. Would you think it was enough if you were in a restaurant? That is your clue. Taking seconds will overload your gut and overwork your digestive system. When your digestive system is free from processing that food you put in there, it can work on making you healthy. That’s what IF/intermittent fasting is all about. But that, too, is another article. Just be sure to concentrate on eating while you’re eating. We tend to gulp food while walking around. I’m the worst while I’m cooking, and I’ve resolved not to do that any longer. So eat slowly and mindfully. Put down your fork between bites. Breathe.

So be well, enjoy your food. Eat hearty (but don’t overeat!), and chew, chew, chew!

Wishing you peace and the best of health!

CLL Book…Taking Topics

Posted by: Denise on: July 19, 2018

My four grandkids. It doesn’t get better than this!

It’s been a while since I’ve posted about writing a CLL book. I still want to! (I still haven’t.) I have compiled a list of important topics to be covered. I will list below. I’m taking suggestions. What would you like in a book like this (that isn’t included in the topics below)? I can’t promise that I’ll be able to write about any of your questions, but I have to say that when I read your comments, I always find myself learning more than I did when I first wrote the original post.

Here are my proposed topics:
(Keep in mind that a “topic” might turn into a whole chapter, or perhaps a small part of a chapter. It all depends.)

Living with CLL – It Doesn’t Have to be a Cure! (this might be the title)

Diagnosed with CLL: What to do? When to tell?

Doctors – Hematologists, Alternative Doctors, Alternative Practitioners/How to Find/ How to Choose

Blood Tests – what matters on a blood  test. Using DirectLabs.com

Supplements – What I (Denise) take and why. How to evaluate what to take yourself.

Alternative Treatments – Ultraviolet Blood Irradiation-Accupuncture- Vit C IV – Laetrile IV

Managing the Fear of a CLL Diagnosis

CT Scans and Other Tests

Cooking Low and Slow for CLL – Why? How? Basic Recipe?

Eating Organic Foods

Do I have to be Vegan or Vegetarian? Food Options: Veg/Fruit/Meat/Poultry/Fish/Nuts/Seeds/Dairy and ratios

Bone Broth Soup – benefits and instructions

Fermented Veggies – benefits and instructions

Eating Out/Plan Ahead or Plan to Fail

CLL and Living a Non-Toxic Life/pesticides/lawns/EMFs/house cleaning/personal care products/EWG.org/clothing/sheets/etc.

My Macrobiotic Experience and How it Helped (even though I’m no longer macrobiotic!)

Either You’re Committed or You’re Not/doctor has 15 minutes and you have  a lifetime/drugs/radiation/chemo/
(My husband and I disagree on this one. For the record, I think it’s fine to have conventional treatment if your life is immediately on the line. However, if you’re going to get well as a DIY project, if you’ve had conventional treatment or not, you have to live this lifestyle every day. EVERY. DAY. Hubby thinks it’s okay to do some things, that it’s better than nothing. I say, if you want results, get committed!)

Never Stop Learning

This is my list to this point. I am more than open to suggestion! Please comment. As always, wishing you all the very best of health! – Denise

 

 

 

Living Well with CLL —
the Movie Part 1

Posted by: Denise on: June 6, 2018

If you’re interested in more CLL alternative health videos, here is video #1. (I know, I know, this is my second posting of a CLL video; I posted out of order. Please forgive my inexperience at becoming a movie “professional.”) In this movie, I introduce Teresa, who came with her husband, Keith, to visit us in Michigan. I took advantage of the opportunity to record our conversations. Teresa told me she had a lot of questions, and I thought it was a good idea to share those questions online. It turns out that Teresa also has a lot of good ideas to share, even though she’s only be at it for a few months. I am impressed… and grateful for this new connection. And please return again and again as I continue to figure out how to make these videos! 🙂

 

New CLL Alternatives Video

Posted by: Denise on: May 30, 2018

I made a series of videos with Teresa, a CLL buddy I met through this site — and who was visiting the state for her son’s graduation. This is the first of what will be many videos from this meeting. I hope you get some good information from it.  It took me some time to figure out the iMovie software. It turns out that it’s easiest to edit and create the video on my iphone — and also to upload it to youtube the same way. Another (funny) fact…the best how-to videos about how to make DIY movies are on youtube and made by kids! 

CLL Bad Blood Test: Now What?

Posted by: Denise on: March 18, 2018

Reading time with Naomi and Moshe. Life is good!

A young woman in her mid-forties wrote me recently to say how sad and fearful she was because, despite her efforts, her white blood count and lymphocyte count went up. My answer to her was comprehensive, so I am sharing it now in this post.

Dear CLL Reader,

I truly understand about how you feel anxious, scared and nervous. I’ve been there, and honestly, some times I get nervous when I see a new bruise (could be low platelets) or if I look pale (anemia), and so on. However, I’m looking at your numbers, and I can tell you that although they did go up (in the wrong direction), you are still at a very safe place. I wonder if the doctor was alarmed…did he or she suggest that you come in again soon? Or that it looks like you will need treatment of some kind? I doubt it, although some doctors are too quick to prescribe treatment, in my opinion.

And…here’s the important part: at some point I learned that if my doctor wasn’t sounding alarm bells, then I just wasn’t going to get nervous either. What I also learned was to take a day (maybe two) to allow myself to be upset and depressed. Then it was time to do research and find ways to improve the blood test scores. So you’re on the right track by writing me. (Although by no means should I be your only source of answers.) Check each of your markers and do a Internet search. There are many examples below.

CLL WBC natural treatment.I just did this search and came up with this page: http://naturalhomeremedies.co/CLL.html. There are many others. Start searching for this in as many ways as you can come up with the right keywords. I have a friend who is a very conventional doctor.She explained to me that when doctors have no way to cure an illness (think of a cold virus here), they “aggressively treat the symptoms.” I’ve tried to apply this to the different blood markers that we test when we have CLL. You asked about your WBC and your absolute lymphocyte count and percentage. I see from what you wrote that you are eating organic and being careful of what you eat, even when traveling. That’s wonderful! Please keep it up!

The next question is: do you cook “low and slow”? This means at low temperature for a longer time, making certain never to burn or totally dry our your food. If you’ve been grilling or overcooking food, this is a place you can make an improvement.

Eat bone broth soup and fermented veggies. This is more advanced, as in not what people will start to do the moment they decide to take control. However, learning to make your own fermented vegetables provides probiotics that far exceed the numbers in those pills we buy online or in the health food stores! See this article: http://darwinian-medicine.com/ask-eirik-how-many-bacteria-are-there-in-sauerkraut/. And at least three alternative doctors/practitioners told me personally to have bone broth soup specifically for leukemia.  These are both healing foods. The Weston Price Foundation is all about both these foods. They have local chapters that teach classes on how to make your own sauerkraut and other veggies, and also how to make bone broth soup.

D’limonene and CLL. Are you eating citrus? I was doing very well eating whole oranges 5X/week. I had them in my smoothie. (Organic, of course.) (I’m not able to do that anymore for a non-CLL reason, but this is a very healthy thing to eat. The peel has d-limonene, which is specifically anti-leukemia.) So if you’re already having a smoothie, add that orange (or lemon or grapefruit or lime). Here is a study about that from a search on “Dlimonene Leukemia”: https://www.ncbi.nlm.nih.gov/pubmed/17169807

Vitamin D3 and CLL. What about vitamin D3? have you had it tested? Your level in a Vit D hydroxy test should be somewhere between 70 and 100, in order to battle cancer. I takek 9000 IU of vit D3 every day, and test my levels about 4X a year. (It’s a blood test.) I also take at least one vitamin K2 pill/day to balance out my vitamin D3!There are also studies that indicate that D3 helps people with CLL. Here is one from a “Vitamin D Leukemia” search: https://www.oncologynurseadvisor.com/leukemia/vitamin-d-deficiency-increased-risk-leukemia/article/463796/

Other ways to get well. Are you getting enough sleep? Are you avoiding toxins? Are you taking Peak Immune by Daiwa? (check out LuckyVitamins.com, for the best deal.) I have a comprehensive list of what to do in this article: http://www.cllalternatives.com/2017/11/cll-diagnosis-15-natural-things-to-do/.  Please read and re-read this. Getting well is a process. It’s good to revisit things you know you should do, that you haven’t gotten to yet.

Remember that the C in CLL is for Chronic. Generally, this is a slow-moving illness, giving us time to work on our wellness. An important part of getting well is to think of yourself as well, and to expect to be here for the long haul. Visualize yourself in your eighties. Think of what life will be like then. I know it’s really hard to conquer the fear, but there is joy and life on the other side!  I remember when I first became Macrobiotic in 2005. That is what helped me conquer the fear. At that time, my WBC had jumped into the 20s, so like you, I felt the end was near. It wasn’t! But early July, it will be 17 years and counting. If it’s like this for me, it can be like this for you, too. Hang in there, and allow yourself some happy thoughts. Do something fun and get away from it for a while, and then double down with one or two new things to add to your wellness plan.

Wishing you peace and the best of health!
– Denise

For whatever reason, when I was first diagnosed with chronic lymphocytic leukemia by my original hematologist, he advised that I keep the news to myself.

“It’s stage zero. You have no symptoms; you look healthy. So there’s really no reason to tell everyone you know—unless you want to.”

Unless you want to.

I had no idea what I wanted. I honestly didn’t even believe I really had CLL until my follow-up visit. I was totally expecting them to test my blood and apologize for their mistake. And I knew what I would say to that. “Thank you! God bless you! No harm, no foul.” And most of all… “Good bye!”

Of course, that didn’t happen.

But back to the issue of what and when to tell people. Now that it’s been sixteen years, as of this writing, I’ve learned that most people tell everyone everything. From day one.

But not me. I told my immediate family and one special friend and her husband. I could tell by her husband’s response that he felt like he was talking to a doomed woman. At that moment I knew what I wanted, and that’s what I did for nearly fifteen years.

I told no one.

I felt safe in my anonymity. I told myself I would share my story when I started chemo. At the time, I was positive chemo was inevitable. In 2001 if you look up “CLL” or “chronic lymphocytic leukemia” on Google, the news was not good. It was all about the Rai or Binet stages. And while I was low on both, all the attending information was not encouraging. Even the brochure from the hematologist was a colossal downer. The last section was about end-of-life decisions. How’s that for encouragement?

I didn’t want everyone to think of me as a dead woman, so I kept my mouth shut and swore my family to secrecy. I kept it that way for a long, long time. For years, actually.

It wasn’t until November 2011 that I started CLL Alternatives.com at the urging of my husband. He said it was time to share my story with other people. I wasn’t keen on that idea because I wasn’t ‘cured’ yet and, at the time, that was my personal benchmark. I wanted to be cancer free.

The reason for this benchmark: I’d been reading a site by a man with CLL who was trying just about every alternative under the sun, including artemisinin. Unfortunately, his final entry was a farewell post. His CLL was fatal, his body was riddled with cancer, and he didn’t have anything to add to his site. I was horrified. For him. For myself. I didn’t want to start a site to do that to others.

But still…by 2011 I was already ten years into this thing and it appeared I wasn’t about to sign off just yet. Not only that, I’d been actively researching and trying out alternatives and changing my lifestyle—and seeing results! So I felt I did, in fact, have something to share. So I started my web site, bringing me out of the closet, albeit anonymously. And ironically.

But slowly, some time around 2013, I started telling friends, one at a time. At first it made me uneasy, as if telling my tale would somehow make it more real. And lethal. But things had changed since 2001. A lot of people I knew were living with cancer. It wasn’t quite the sudden and immediate death sentence it had been.

So I told more friends, one by one, especially and always those who had or were close to someone who had a diagnosis. At this point, it couldn’t make the diagnosis any more real than it already was. And it certainly didn’t make the course of the disease any worse. In fact, by 2013, my WBC (white blood count) started to drop as a result of starting a raw food/low temperature-cooked food diet.

At the time of this writing, after sixteen years of living with a CLL diagnosis, I believe I’m out of the closet. I’m Denise and I have a CLL Diagnosis. Here is an important point: because of Hessel Baartse’s web site and story, I’ve learned to refuse to say that I “have CLL.” No. Instead I say I have a “CLL diagnosis.” This separates me from the illness, and I enjoy every degree of separation!

So what should you do if you are newly diagnosed? To tell or not to tell? My answer: it’s entirely up to you. I’d go with whatever feels right. For me, I needed the cushion of years—and wellness—before I could share my story with my in-person friends. I’m so glad my husband encouraged me to start CLLAlternatives.com because I’ve made so many friends, and so many valuable connections. And if I’ve helped a lot of people along the way, well, that’s kind of the point.

CLL Diagnosis: 16 Natural Things to do

Posted by: Denise on: November 7, 2017

The author and two of her grandchildren. Life is good!

When people first find my site, CLLAlternatives.com, it’s generally because either they—or someone they care about—has recently been diagnosed. Of all the gut-punches a person can sustain in their life, this is probably the worst. Even the word leukemia itself strikes terror. A blood cancer. A death sentence.

 

I get emails and postings from many people who are stunned and trying to figure out what to do. Getting well is possible, but there’s no quick answer as to how. There is no magic bullet; only magic ammunition. The list I’ve compiled here is in no means the entire answer to getting well, but it is certainly a good start.

There is so much to know, and to learn. But every journey starts with the first step, and this list is a very good step in the right direction. With that in mind, here are 16 things you can do to get a jump start on improving your health and either getting totally well – or at least getting well enough to be confident of your future and longevity. The list keeps growing, and I might add to it in a different post from time to time.

  1. Vitamin D3
    Take 8,000 to 10,000 IU of Vitamin D3 every day, and get your levels tested regularly. For those fighting cancer or leukemia, your level should be somewhere between 70 and 99. (See links in bibliography for more information.)
  2. Stop eating sugar.
    This is both simple and difficult, but it is also essential! Cancer feeds on sugar. Strive for a Paleo or Ketogenic diet. You don’t have to make the changes over night. You can start by cutting out all desserts–candy, cake, cookies, ice cream. If this sounds horrific, start by reducing the amount of sugar and find alternatives, or start making your own desserts at home. For example, I make my coconut-carob bars about once a week or so. They are made of just two ingredients, and they are so satisfying that I no longer crave chocolate! Not only that, they are healthy!!! It happens. Keep in mind that beyond desserts, you should eliminate white rice, white flour, and white potatoes from your diet. Try to eat more nuts and seeds, and fewer sweets. More details to follow.
  3. No processed food.
    This means shopping in the produce section of your supermarket, and preferably buying as much organic as available. This means buying organic turkey and chicken in its raw form, with no additives or preservatives. (Read the labels.) This means buying only those packaged foods with labels indicating ONLY ingredients like: frozen blueberries (in the frozen section), or a jar of raw, local honey, or almond butter that contains only almonds. Rice cakes that are made of brown rice. That kind of processed food is okay.
  4. Cut out gluten.
    There is increasing evidence that gluten is a culprit in robbing our health. This is especially important if you have a history of stomach upset or digestive issues. Cut out the gluten and you just might find that your gastric issues are history. The theory here is that the more items that are stressing your body, the less energy and immunity you have to fight your CLL. There are so many gluten-free items in the market these days, this shouldn’t be that difficult. (Don’t forget to check the sugar level on the label.)
  5. Eat at home.
    You know what you’re eating when you eat your own cooking. Even “healthy” restaurants will have foods with hidden ingredients, food cooked or grilled at high temperatures, food with sugar and/or gluten. At this point I’m eating out about one or two times a week. I choose restaurants with good salads, as I prefer to avoid eating meat out. I don’t trust their meats. (For example, it’s rare to find a restaurant that services wild-caught salmon, rather than farmed. And even wild caught salmon would be unhealthy if grilled.) If I have to, I’ll eat before I go out and have a bag of nuts in my pocket to eat after the meal, on the way home. Failing to plan is planning to fail. So look up the menu online and figure out what you can eat! I’ve even brought my own garlic sea salt to use instead of a restaurant’s GMO salad dressing. Think ahead and dine out infrequently.
    A subtitle here show be to EAT Fermented Veggies and Bone Broth soup! The fermented vegetables are natural and much more effective probiotics than those pills we buy at health food stores — with several times more “good bugs” than the pills. Bone broth soup is full of collagen, which builds the connective tissue and is a health builder for those with leukemia (and anyone wishing to be healthy!) The Weston Price Foundation is a good source of information about how to make your own pickles and soup. They have many books, and better  yet, local chapters that give volunteer-driven classes on these subjects and more.
  6. Cook low and slow.
    Another way to say this is: don’t eat food that was cooked at high temperatures! Grilled and burnt food raise your WBC temporarily. It also gives your body potential carcinogens that your liver and digestive system will have to tend to. Instead make stews and stews, roast in the oven at no higher than 300 degrees (with water and covered with foil), slow saute meats and vegetables, adding olive oil and seasonings when meal is almost completed. Make use of your crock pot, or simmer on your stove top using plenty of water to make certain it doesn’t dry out in your absence. This tip has been HUGE for me. When I started doing this at the end of 2012, I reduced my WBC to the low 20s in the span of three months. I’ve continued and now my WBC is (usually) in the mid-teens.
  7. Baking Soda
    Take 1/8 teaspoon of baking soda in your water before bed each night to keep your pH at 7 at optimal levels. I buy the market brand and take this with my night pills. (All supplements.)
  8. Peak Immune
    Take Peak Immune, by Daiwa. Especially if you’ve ever had any problem with your neutrophil level. Buy the bottle at the best price you can, and take it religiously. I buy it on the re-order system on LuckyVitamin.com. Shop around for your own best deal. (I have no affiliation with this company. I do not sell anything that has to do with CLLAlternatives.com, or with CLL in general. I write my blog and help people on the phone because that’s what I do. This site and its upcoming book are non-profit in every sense of the word.) But back to Peak Immune…my neutrophil level remains in the safety zone so long as I keep taking this pill. It could be that some of the healing mushrooms could have the same effect, but I’m dancing with the one that brung me. I’m so grateful to have found a product that keeps my neutrophil level normal—with zero side effects—that I plan to take it (and recommend it) forever.
  9. Natural Personal Care Products
    Make sure all your personal care products are either organic or home-made. Don’t let it touch your skin if you wouldn’t eat it! These days I keep a small glass container of organic coconut oil in the bathroom to use as skin “cream.” Works wonderfully! This also goes for toothpaste, soap, makeup, shampoo, conditioner, the whole ball of wax. (If the wax is organic.  )
  10. Natural House Cleaning Solutions
    Clean your house without toxins, as well. My husband was after me to do this for years. I wish I’d listened to him sooner. I use baking soda, organic dish wash liquid, white vinegar, peroxide, and occasionally a lemon to clean my kitchen and bathroom. I’ve recently added the Mr. Clean Eraser as I can’t find anything on the Internet showing that it’s toxic. Now that I use all these nontoxic items to clean, it’s funny how noxious even products like Ajax and Comet smell. Glad to have them out of my house! Once again, this is getting the irritants out of the way and allowing your body to heal!
  11. Reduce Your Stress
    Arrange your life to reduce your stress. I know, easier said than done. But sometimes you have to step back and make changes in your life, if your life is killing you. Does your boss make your blood boil? Look for another job, or even consider changing careers to something more peaceful or meaningful. Avoid friends or relationships that cause your pain. Step back and take a look at your life and try to set things up to make yourself happy. Happy people have a better chance at healing. Which brings us to:
  12. Get Eight Hours of Sleep Per Night
    Plan to get into bed at 10 PM and do your best to make that happen. I will admit that many times I make it there a half-hour later. But 10:30 is a LOT better than 11:00 PM. I truly feel the difference! For example, if I’ve been stressed (it happens) by life or by minor illness, like a cold, my salivary glands tend to swell and get tender. If I get enough sleep, voila! In the morning, my neck feels normal again. In fact, when I get good sleep regularly, I feel wonderful. This is simple and free, and I highly recommend it!
  13. Exercise!
    You don’t have to run a marathon. In fact, it might not be a good idea. (See number 11.) However, going for long walks, jumping on a rebounder (mini-trampoline), lifting weights, going on a treadmill or other exercise equipment like a stair-stepper or elliptical trainer, is a great idea. It stresses your body the right amount. This is the “use it or lose it” issue. If you let yourself become, a couch potato, this is terrible for your general health. And when dealing with CLL, your general health matters! It is your keep to getting well!
  14. Find your meditation.
    I know this can sound strange. And truth be told, I don’t really meditate. But I do crave silent alone-time when I can sit with my journal and write. This is my own method of ‘meditation.’ Find your own way to de-stress, preferably daily. Listen to your favorite music, pray, relax with a good book. Color in those adult coloring books. Whatever works for you. Don’t make it a chore; that’s not the point. Find something relaxing that you really want to do to get inside yourself and leave the world behind for at least 15 minutes each day.
  15. Never Stop Learning
    Get acquainted with Mercola.com for a treasure trove of past articles on all things health-related, as well as a daily email of more and more health-related articles and news. Also, log onto westonaprice.org and sign up for constant contact from this valuable organization. This is where you can learn how to make your own fermented vegetables (sauerkraut and pickles) and bone broth soup. Both are essential for getting well. (Do some of the other steps first, and work your way to making your own healing foods.)
  16. Buy The Metabolic Approach to Cancer by Winters and Kelley
    I was so excited when reading this book. Because…I’m already doing about 90% of what she says. Why is this exciting? I was diagnosed in 2001, told by my pathologist uncle that I’d likely have symptoms in two years and be dead in five. (That didn’t lead to a good night’s sleep, let me tell you.) But here it is, sixteen years later, and my numbers are similar to what they were at diagnosis, and other than those salivary glands that have been swollen since the beginning of time and one “palpable” (but barely visible) node on my neck, I’m symptom free. This didn’t happen by itself. And I didn’t read this book until this past summer. Over the course of time, I’ve shifted my diet from SAD (Standard American) to what I thought was “healthier” (yogurt on an organic, store-bought cookies), to Macrobiotic (beans, greens, brown rice and sea weed), to my current amalgamation of Paleo, ketogenic and Weston Price Foundation. You can cut out a lot of wasted time by reading this book! I recommend it with my whole being.

There is so much more I could say, but I’m leaving it here at Lucky Sixteen. Please read and consider all these suggestions if you’re just starting out. Please post with your experiences and thoughts, and with your own suggestions. I do answer private emails, but I think we all help each other when we’re willing to post. You can do it anonymously, but do it!

One more note:
I posted a happy picture of myself because CLL need not consume your life. We are all mortal, and a leukemia diagnosis makes this painfully evident. That said, I can’t think of a better reason to enjoy life every day!

 

 

CLL: Curable? Manageable?

Posted by: Denise on: September 1, 2017

CLL Alternatives

Me (Denise) at my desk at work. Notice the journal, to my left, and my MacBook Air (not visible, but just to the front of the notebook), where I am penning a book about my CLL experience.

Hello, It’s September 1st of 2017, and I thought I just might be overdue on making a post here. An update, if you will. I’m doing fine. Great, even. As a matter of fact I pay more attention to my signs of aging than I do my CLL, which is amazing! When I realign my psyche, I realize that I’m totally grateful to be living long enough to worry about wrinkles! Yay. I’m 62, and I have four grandchildren. When I first started this CLL Odyssey, I wasn’t at all certain I’d reach this stage or status. But I have. And the more I read and learn, the more I believe that it’s not a fluke. Others have done it, and I’m doing it, too.

WBCs and other markers. When I was first diagnosed in 2001, my WBC was a paltry 14.something and I was in Stage Zero. Of course I was still totally freaked out, and gearing up to die sometime soon. Despite all my efforts, my highest WBC was somewhere around 47, in 2012 or so. (I don’t have my Excel Chart with me.) Today, at last reading it was 17.something. Better yet, it’s been in the teens for about over a year. And my hemoglobin, which has dipped as low as the 10s, has been consistently normal, and over 12, for the same period of time.

My magic bullet? I don’t have a magic bullet. And I’m not cancer-free, either. If I went to the doc’s office for the first time and had a blood test, I’d be diagnosed. (I’m working on this, but not at all with the fear factor; I just work to be as well as possible, very consistently.) But back to the magic bullet. Over the years (since 2001), I’ve changed up and tweaked my diet several times. I eat zero processed foods, I buy and eat organic as much as possible. I slow cook all foods, vegetable and animal protein. This means I have soups and stews, and slow stir fries, which all happen to be delish! I eat no sugar or gluten, and the only dairy I eat is grass-fed butter. I’ve gotten rid of all toxic home care and personal care products. (This means I clean my house with baking soda, vinegar, and peroxide.) I exercise on an elliptical trainer, rebound, and lift weights 3-5 times/week. A big part of my daily/weekly diet is home-made fermented foods (sauerkraut and pickles) and bone broth soup. And I take a boatload of supplements, including my 9000 IU of vitamin D3 and four Peak Immune pills (by Daiwa) every day. I (try hard to) get to bed by 10 or 10:30 and get a good night’s sleep. And it is my goal to make my life as stress-free as reasonable and possible.

Okay, that’s my magic bullet. Or my magic ammunition. Sorry, I know it’s not an easy answer. But it works! It’s possible that if I tweaked just a bit more, I could get those numbers down to normal. But honestly, I’m pretty happy where I am. Watchful. Persistent and consistent. (I don’t cheat. Ever.) And despite all those changes, I feel like I live a pretty normal life. We enjoy our grandkids (and their parents), go out with friends, entertain. We even travel. Traveling is challenging, but worth it. We try to rent hotel rooms with kitchens, and bring enough food to make it comfortable. If it’s a weekend away, I just order a lot of salads in restaurants, and eat oatmeal for breakfast. But if it’s a week, and that’s the longest we ever go, we pack cooking equipment and containers to take food with us on bike trips, or wherever. It’s not normal like everyone else, but it works. It’s still fun. I guess it’s our “normal.”

A CLL Alternatives Book. I’ve decided to write a book. I know that the information in this web site is disjointed. I know I should spend more time on it. But despite all my best intentions, I normally do not. But I am a writer at heart. And I’ve started to pen a book that puts all of this information into perspective. And into chapters. This is not a money-making venture. I plan to have the book available as an ebook on Amazon for  $0.99 and I will sell the POD (print-on-demand) book at cost. (Whatever they charge me to put it together, that will be the charge.) So whoever needs the book can have it. Once again, the book is not necessarily a blue print for what exactly to do with a CLL diagnosis. Because we’re all different. But…it will be a blueprint for learning and testing until you find what it is that YOU need to do to be well. I’m sure there will be a lot of commonality in everyone’s approach. And keep in mind that conventional allopathic treatment (chemo, etc.) is also not one-size-fits all.

This will be a long process, but I’m making my commitment here. My husband also wants to post videos of interviews and cooking demonstrations. I think the cooking would be helpful. I unfortunately learned how to cook naturally after our boys became adults and flew the coop.

Two Book Recommendations. Before I leave, I have to recommend two books. By rights, they should each be a separate blog post, and eventually (no promises) they may be. Both books opened my eyes and made me see that what I’m doing makes sense. And my results also make sense, too. I will go into no more detail but to say, please read these books! If you can choose only one, choose the The Metabolic Approach to Cancer, as it is most instructive of how to fight cancer with nutrition/etc. However, if you or a loved one has a leukemia or cancer diagnosis of any kind, you deserve to read Tripping over the Truth: How the Metabolic Theory of Cancer is Overturning One of Medicine’s Most Entrenched Paradigms.

Please respond by post or shoot me an email. We’re all in this together!
To your good health! – Denise

Supplements for CLL

Posted by: Denise on: January 25, 2017

CLL supplements

My two pill boxes. (My daily/weekly pills will not fit into one box.) And most of my pill bottles. I keep a dispensary of back-up bottles (not seen) in my cupboard.

I recently was emailed a request to update my CLL supplement list. My list of supplements is long, but not everything I take is because of CLL. I’m 61 (and a half), so like most people, I have other issues as well. I will therefore give a reason for each supplement I take.

The first is technically not a supplement. It is a glass of ACV (apple cider vinegar), lemon, and honey. To be more specific, a ‘splash” of ACV, half a squeezed lemon (or 3 tablespoons of ground whole lemon my husband makes in the vitamin with water and ice and saves in a jar in the fridge–nice hubby, eh?), and about 1 tablespoon raw local honey (we buy at farmers market or health food store). Add filtered water and stir. Drink with a straw. Rinse and brush teeth after drinking. It’s a great way to start the day!

Vitamin D3
5000 IU in the morning
2000 IU at lunch and dinner
for a total of 9000 IU.
People with cancer tend to be low in Vit D3, which we normally get from sun exposure. Mine was 19 when first tested.The goal for those with cancer is to get their vit d3 hydroxy test up to somewhere between 80 – 99. Mine has been as high as 100. Test frequently, and drop down the amount if you get too high. (I used to take 10,000, and now I’m down to 9000/day in divided doses.)

Ubiquinol
(a form of Co-Q10)
200 mg/breakfast
This is good for the heart. Both my parents have/had heart issues. I take this as a preventative. (I think it’s good for everyone, but do your own research.)

Krill Oil
667mg @ breakfast
this is the Omega 3 oil that everyone should take. Many people take fish oil. I prefer the krill. No fishy smell.

Astaxanthin
4mg/breakfast
This is one of those super antioxidants. If you take it during the summer, it protects against sun burn. (Doesn’t do the whole job, still have to be vigilant about that.) I take this one for general health.

B-17/Laetrile
500mg- bfast/lunch/dinner (total 1500mg)
This is an anti-cancer pill. Laetrile (found in apricot seeds, apple seeds and other natural parts of fruits) kills cancer cells and leaves normal cells alone. You may read that it’s dangerous because it is cyanide. Only half of that is true. The pill does act as cyanide in the body, but only when in contact with those cancer cells. I’ve been taking this dose since 2007 and I’m just fine. My source is tjsupply.

Curcumin
1000 mg/total, 500 at bfast and dinner
There are articles about curcumin and CLL, and other cancers. No side effects, and I believe this helps.

Vit E tocotrienol
50mg — just three times a week, @bfast
(I dropped to this level when I started taking the next two pills)

Vit E succinate
200 IU daily

Biotin
10,000mg daily
(The above two — biotin and Vit E Succinate — are part of a prescription from an alternative doctor to help regrow my ever-thinning hair. Not sure how well it’s working for the hair, which is doing okay for now, but my CLL numbers do well while on this also. While this is a prescription from a compounding pharmacist, both ingredients are available either at health food stores or online.)

Allicidin
one pill each day @bfast
This is a garlic extract that is supposed to boost your immune system. No icky garlic smell, small pill, but significantly more expensive than garlic pills. If you’re trying to cut costs, I’d try garlic pills as an alternative.

Olive Leaf
500mg divided between bfast and dinner

Pau D’arco
3.3 grams divided betweeen bfast, lunch, dinner
there are articles about pau d’arco being a leukemia fighter. The 3.3 grams is 9 pills/day (three at each meal) Not sure if this is a winner, but I consider it to be part of my arsenal.

Nettle Leaf
2610 mg/day (six pills total– two pills each meal)
This is another leukemia fighter. Do a search on “nettle leukemia” and read what you find. I’m committed to these as well.Neither this nor the pau d’arco are that expensive.

Digestive Enzymes
I use Life Extension. Other brands might be good. I take one/meal. As you (ahem) get older, you lack the enzymes to properly digest and assimilate (absorb) your food and supplements. I believe that my CLL came largely as a result of lifelong chronic bad digestion. Digestive Enzymes are on my must-take list.

Biosil
This is a silicon, and one of those hair-skin-nails pills I take for my beloved hair. : )
Does it work? I know my hair started falling out in sheets when I stopped it. So, despite how expensive it is, I keep it on my list.

Peak Immune
1 pill, 4X day (bfast, lunch, dinner, bedtime). This one is on my MUST TAKE LIST for CLL. I used to have problems with low neutrophils. When neutrophils get low enough, it can be life threatening. This is because neutrophils are on the front line of fighting infections. So when they tell you you won’t die of the CLL, but “with” it, it could mean you die of a secondary infection. So check your neutrophils. If the number is low, take these. I get them for $35/bottle from Vitacost, cheapest when you’re on automatic re-purchase. I’ve paid as much as $46/bottle. When you start you take 12 pills/day, and work your way down to 4/day. I take extra when I’m ill or very stressed. I believe in these. When I stopped taking them, my neutrophils tanked. When I restarted, up they went. (The medical establishment prescribes neupogen, which is not that safe, look it up.))

Amino Acid Complex
4 capsules, divided…2/bfast, 1@ lunch and dinner
These are for my low protein count. I take this both for CLL and for my hair. My protein tends to the low side, despite the fact that I eat red meat once every week or two.

Selenium
200mg @dinner
100mg @bfast
I’ve read about selenium having anti-cancer properties. I can’t really measure how well this is working for me. However, it’s on my list as I don’t take a multi-vitamin.

Calcium
250mg @dinner

Magnesium
1000mg divided @brast/dinner/bedtime

Change-o-life
2 pills/2X day (bfast and dinner)
I started it for my hair (zero effect), but it does help with energy and stamina. (Alternative doc said not to take as some of the ingredients are related to breast cancer. However, I take less than the dose recommended on bottle.)

B-Complex
Megafood brand balanced B complex
I take as directed on the bottle. Part of my multi-vitamin alternative, and was recommended for hair.

Thyroid Energy
Take 2/bfast
I take it because every alternative doc I’ve been to tells me to go back on the dessicated thyroid and I don’t want to. So I take thyroid supporting pills. These are one of them. Part of getting well means treating your whole body, not just the CLL.

Primrose Oil
2600 divided between lunch and dinner
(for my hair…again)

Iron
(ferrous sulfate)
130mg each day
I’ve had a low ferriten count which is related both to my tendency to have a low RBC and also (you guessed it) to thinning hair. So I take these every day. They cause constipation. Yup. So I take the next pill to deal with it. Works like a charm. Note: ALWAYS TAKE IRON SEVERAL HOURS APART FROM MINERALS;this means with no dairy (calcium) and no other mineral-containing supplements. This can be a challenge, and until I learned it, I had a hard time getting my ferriten score up. (I take my iron at lunch with vitamin C and other, non-mineral supplements.)

Triphala
I take NOW brand, but others are probably fine.
1.5 pills/day.
.5 at bfast, 1 at dinner
(see above) When I was taking a smaller dose of iron, I took less triphala. You have to experiment and see what works. It can take a few days till your gut settles down to business. Be patient!

Vitamin C
1000mg at bfast lunch dinner  (total 3000mg)
For all around good health, and also at lunch it helps to absorb the iron. (See Iron above.)

Energyzing Iron
by Enzymatic
I take two/day at lunch, along with my regular iron pills. Not sure if this one is working that well, but afraid to stop because my ferriten is finally climbing.

Iodine
12.5mg/breakfast
this is another thyroid support item

Methyl Folate
1000mcg @bfast
recommended by two alternative doctors for general CLL support (can’t remember why) : )

Colostrum
1 pill at bfast and dinner
This is supposed to boost immune system

Elderberry
575mg @ lunch
generally supports immune system

K2/MK7
1 pill
helps coagulate blood (good for low platelets)
generally recommended to balance your vit D intake

D’Mannose
as needed for UTIs (which thankfully I don’t get much any more)
I take these when I THINK I might get one, and never travel without it!!!!

Maitake D Fractions
These mushroom pills are well touted as being therapeutic for cancer. I did well without them, but added it to my list becuase it was so well recommended.

Baking Soda
about 1/8 teaspoon in a glass of water before bed
this keeps my urine alkaline, which is supposed to be helpful for general health and for cancers
this is a cheap one! Just buy the box of baking soda in the super market and use!
(I use it for cleaning as well, instead of Ajax or Comet.)

Grape Seed Extract
@ bfast and dinner
also good for general health

Zinc
1 pill, bfast and dinner
part of my multi-vitamin set

Betaine HCL
This another digestion booster. The HCL is for hydrochloric acid.  Some bottles say to take AFTER meals. I take it with meals, or eventually I forget to take them. When I stopped for six months, my dental visit showed more plaque. So apparently it breaks down plaque and other ickies in our digestive system. Worth a try, I think.

Hemp Protein Powder
5X/week with my breakfast smoothie
take as directed on bottle,
I’m trying to avoid dairy, as it causes congestion.

 

So this about sums up my daily pills. There are others I take, as needed. Bromelain (pineapple extract) for pain and inflammation.  NAC and ALC for my Menieres, as needed. There may be more, can’t think of them now. Please feel free to post any questions on this post and I promise to answer asap.

 

To your good health!