Category: Supplements and Pills

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: Mushrooms and Neutrophils

CLL Mushroom Powder
CLL Mushroom Powder

In a recent email one of my CLL buddies wrote and told me about her improvement in neutrophil count She had been taking  600 mg of shitake, four tablets of Maitake-D Fraction, 1950 mg (3 tablets) of Reishi, and two tablets of AHCC. She noted that her neutrophil count went up to a high normal at her next blood test! Great news!!!

After this success, she experimented by dropping to a 1/4 of the dosage. Unfortunately, at her next blood test, the neutrophils showed a rapid descent. It was no longer in normal range. This CLL friend of mine wanted my opinion of what to do.

Management vs. Cure
Of course, I told her to go back on the dose that worked for her! Not as a doctor (of course) but as a CLL friend. The reason being — and this is so important — we are not curing our CLL by everything we do and all the supplements we take; we are managing it! Let me repeat…it would be wonderful if we all could have a home-made cure. I’ve spoken to three men who feel that they have, in fact, beaten CLL by DIY, home-done efforts. This has NOT been the case for me. I still would be diagnosed today if I had a blood draw for the first time. They would call me in or call me back to give me the hideous news. And yet, here I am, alive and quite well (thank you very much) after 17.5 years at this. Why? Because I am managing the disease, and this is working for me!

Now, why do have the photo of mushroom powder on the top of this post? Good question. Because of this CLL friend’s email, I reviewed my own history, my supplement notes in particular. I used to take the Maitake D Fractions, and that was at a time when I was starting to show real improvement. (At that time, my WBC went down over 20 points and for a change my RBC didn’t nosedive along with it. Whew!) I was also cooking low and slow at that time, and I gave that one thing a lot (maybe too much) credit.

After I stopped taking the Maitake D Fractions (recommended by one of the CLL healed, no less) I substituted by buying dried shitake mushrooms and grinding it to add to soups and stews. Later (I really don’t know when) I started buying organic mushroom powders, and adding a scoop to my smoothies I have about five days/week. The good health, including normal absolute neutrophil counts, continued, and continue to this day.

I mix up the type of mushrooms. The pictured above are just four of the variety that I alternate day by day. If you do a search on each of these mushrooms, along with “CLL” you will see there is evidence that this food (not a medicine) is good for you! It helps people with CLL! The types of mushrooms I take regularly include shitake, maitake, reishi, cordyceps, lion’s mane, and turkey tail. I have no favorites; once they’re mixed in the smoothie I can hardly tell they’re there.

Are Mushrooms ‘the’ Cure?
Do I recommend that you drop everything else and start taking mushroom powder and that this alone will heal you? Not such a good question this time. The answer is NO! Getting cancer or leukemia is a comprehensive process, and so it healing yourself enough so that you can continue to live a good life. All the other pillars that create health matter: clean food, clean air, clean water, reduced/managed stress, good sleep, meditation, finding joy in life; these are ALL critical, and not something that you will find in your oncologist’s office. Perhaps not even in your alternative practitioners office. We need all our professionals, but to be well you have to count on yourself.

What about the Peak Immune? I’ve written about this product before. I am NOT affiliated with this company or any other. This is a non-profit site written only to share and help! I started Peak Immune years ago, at the advice of a Chinese herbalist (himself recommended by an alternative MD I traveled to see in New York.) Peak Immune is an immune modulator. This means that it regulates your immune system to the place it should be. Not ramped too high, and not dropped so low that you are in physical danger.

Peak Immune is not a mushroom. I believe it’s rice bran arabica, in this case a food derivitive. I’ve taken Peak Immune for years (cheapest in the States at LuckyVitamins.com, when you buy via autoship). It has been the one thing for certain that has increased my neutrophils. On the literature it says that it “increases the activity of NK (natural killer) cells.” So when I first started taking it, I wasn’t expecting it to increase my neutrophils But it most certainly does. Now, with the mushroom powder, I take only three Peak Immune capsules a day, and I seem to be holding steady.

You have to test this for yourself. Once again, this is my experience, along with the stated experience of a woman who wrote me recently. It is not harmful; it is a food. The mushrooms are not inexpensive, and neither is the Peak Immune. You don’t have to buy an arsenal like I do, but change it up, one at a time. And if you do try this, and test your results at your next blood draw, let me know — good or bad — how it works out.

Special request: While I do respond to emails, I think it’s kindest of everyone to respond directly on this site, to the pertinent post. This will help people on a search find not only my words, but your concerns, questions, worries, and your own answers and experience as well. I promise you will remain anonymous. It all helps!

As a final note, I am still working on my book. I will check in again, not necessarily “soon,” but please know that it is in progress.

Wishing you peace, joy, and the very best of health! – Denise

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 Book…Taking Topics

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

 

 

 

CLL: Curable? Manageable?

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

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!

 

Alkalize for Health with CLL

baking soda cll
Alkalize with baking soda.

I’m really big into lists. But sometimes I think it’s best to focus on one good thing at a time. And one good thing you can do for yourself is to alkalize. There is a lot of information out there about what to eat in order to keep your body alkaline and therefore more healthy. Livestrong has an article on just this topic.

Ironically, some of the acidic food we eat or drink can make us more alkaline. For example, vinegar is acidic, but is recommended for maintaining alkalinity. This can be confusing, but don’t let it get in the way of working towards alkalinity. In general, if you eat mostly vegetables, either raw or lightly cooked, along with your animal and vegetable proteins, you are encouraging your body to be alkaline.

To test your body for alkalinity, purchase some test strips either from your local health food store or online. Do a quick search and you will find them. We’re supposed to keep our body somewhere at 7 for optimal health. It’s recommended to test your morning urine for an accurate count. Follow the directions on the package. You can either dip the strip into a cup or your urine, or place the strip in your urine stream. Either way, quickly compare the color of the strip to the chart that comes on the package to get your reading. Do this for several days to get an accurate picture of your alkalinity.

Even with a healthy diet, you might find you need a boost to maintain alkalinity. What I’ve found very helpful it to take about a quarter teaspoon of plain old generic, bought-in-the grocery-store baking soda in a glass of filtered water. I take this just before bed with my enzymes, and once again first in the morning. Be sure to measure your first morning urine to see if this is working for you. Over time, you might not need to measure this all the time. But it’s good to check it once and again to make certain you’re maintaining your alkalinity.

Is this what is keeping me well? I believe it is one of the many things I do that maintains my good health. It’s easy, it’s unbelievably cheap, and as far as I know it can do no harm. An added side benefit for women above a certain age… no more pesky nighttime hot flashes. That’s worth taking it all on it’s own!

To your good health and alkalinity!!!

Living Well with CLL — June 2015 Update

DenisePeterDogsSummer2014Living Well with CLL — June 2015 Update
It’s been just about fourteen years since I was first diagnosed with CLL, and I thought it was time I made an update. It’s always my goal to post more frequently. I worry that people who go to this site will get a flash of fear if I haven’t posted in months (or even in a year!). I know I used to worry that other CLL-ers might have become too ill to post — or worse. So I always resolve to post more frequently. One resolution I have made good on is that it’s now possible to make posts in the comments section of this site rather that to be available only via email. This is huge! The more we can communicate on this site, the more people can benefit from the information we put out here.

I would like to say that as much as I’ve started this site to help others, it has been helpful for me, too. So a big THANK YOU to all the people who have become my email buddies! We are all proving that CLL does not have to be a death sentence. We can survive with — and without — conventional treatment, depending on our needs and particular situation. Whether we choose to go conventional or not, all the good things we do for our health will help us stay well and prevail!

Now I feel like I’m writing a State of the Union address. But what I really want to do is give an update of my health. I’m doing very well! My last blood test was better than it had been in eight years! Perhaps I will soon post my personal Xcel sheet, showing my blood test results from June 2001 to the present. Now here comes the question: what have I been doing to be well and stay well (and even get a little better)?

I wish I could give you a magic-bullet answer. But the answer is simple and also complex. (sorry) If you look through this web site/blog you will see a lot of the things I’m doing and have done. But there are some basics and I will share them with you.

1. Get eight hours of sleep each night. We heal while sleeping, so why not get the most benefit out of this. You can go to mercola.com and look up suggestions to make this happen. What I personally do is eat a light dinner (most of the time), make certain your bedroom is super dark (room darkening blinds or drapes), take your magnesium before bed. Wind down and keep electronics out of your bedroom. (I do read my Kindle each night, but no TV.) I love this! It’s very luxurious to get enough sleep each night. I go to bed with the expectation of at least a half hour to read. After that I sleep well. Also, I try not to drink too much after dinner to avoid trips to the bathroom.

2. Reduce stress. Yes, life is worth living with less stress. Maybe even worth more than a high-stress life. Make subtle changes in your work life and in your personal life to accommodate this. Be kind to yourself. Imagine that you’re helping someone else, if that’s what it take to allow yourself to say ‘no’ to others’ demands. (This doesn’t mean you have to become self-centered; just that you don’t over-extend yourself to the point of making your life difficult.)

3. Eat food as close as possible to the way God made it. This means eating a lot of fresh, organic vegetables, either raw or lightly cooked — or better yet fermented. Learn how to ferment your own food. It’s easy once you get the hang of it. I can perhaps make some posts about how to do this. But honestly, youtube.com is loaded with videos of more talented people sharing their cooking and fermenting tips. I also eat organic beef, chicken, turkey, wild-caught salmon, some dairy (not much, still have some lactose intolerance), organic nuts and seeds (pre-soaked) and occasional bean and rice dishes. I soak all grains and legumes for several hours before draining, rinsing and cooking. This releases the phytic acids that protect the grains/beans from spoiling, but also make these foods hard to digest.

I’ve recently started to drink GT brand kombucha, which is a fermented tea — and it’s delicious! And also chock full of probiotics and a great way to detox. I’ve taken a class through my local Weston Price Foundation in how to make this drink at home. Can post about that as well, eventually.  The point is to take in as many natural probiotics in the fermented foods and drinks. This is much more effective that taking the probiotic pill. (Not that I’m against pills; I take a boatload daily.)

4. Never eat burnt or even browned foods. I know this is hard to deal with to start, but honestly I’ve learned how to make delicious foods even with slow-cooking only. I make soups and stews. When I roast chicken, I season and then add a lot of water to the roasting pan (about half-way up the raw chicken), and then cover the top of the pan with foil or the lid, and cook at 350 degrees for the usual amount of time (an hour to 1.5 hours), keeping an eye on the chicken to make certain it doesn’t get close to burning. The chicken comes out tasting great! Fall off the bone delicious. I cook enough for leftovers, so that I’m not cooking all the time. On nights when I don’t have time to cook (or haven’t planned ahead) I slow-fry farmer’s market eggs in grass-fed butter on my cast-iron skillet. I simmer all the way through, carefully turning over when the eggs are just done enough to turn. No brown–front or back — and delicious. You can also boil or poach your eggs, as this is easier! (just love those fried eggs) 🙂

5. I’m gluten free all the time. I’ve been doing this for so long it’s not a challenge. I just about never eat bread,but do keep gluten free bread in the freezer for emergencies. I’ve found that if I eat even the gluten free bread twice in one day I get mouth sores! This is a message from my body to stay away from processed foods!!! I will make that it’s own number:

6. Do NOT eat processed foods! It’s poison, even the organic so-called healthy stuff (see GF bread above). It’s okay on a rare occasion, particularly when you’re with other people. but try to avoid this on a regular basis.

7. Exercise regularly. Your body was meant to move. Exercise as much as you can and as often as you can. I’ve never been athletic, but even I can exercise. I rebound, sprint on the elliptical, and lift weights at least three times a week. Rebounding is bouncing on a mini-trampoline. This is great for CLL as it moves the fluid through your lymph system. If we’re sedentary, the lymph doesn’t drain, which is not good. So bounce several minutes a day at least. Gentle bouncing works as well as high bouncing (and doesn’t jar your body so much). Sprinting means I go as fast as I can 30 seconds out of every two minutes I’m on the elliptical. I don’t recommend the treadmill. It’s more boring (to me) and too many people have been injured on it. I’m thinking of a co-worker, Sonia, Harry Reid, and also the Facebook COO’s husband. No point in taking good care of yourself and then risking your life while exercising, no?

8. Choose your supplements wisely. I probably take too many. Supplements are like advertising. You take a lot of them and they work; but you’re not sure which ones are working! Here are two of my favorites: (not going to include my entire list, as some of them are to preserve my hair as I’m one of the 1/3 of women who experience hair thinning with age; also take a lot for natural thyroid care and heart health. Not all my issues are CLL-related).

A. Peak Immune (by Daiwa) ~ has been a life saver, possibly literally, in keeping my neutrophils at an acceptable level. I’ve actually inadvertently done a double-blind on myself with this pill. When I take it, my levels are good. When I stop, after a few weeks or months, down they go. If your neutrophil level is fine, don’t bother with this pill as it is expensive.

B. Vitamin D3 ~In recent years, this vitamin has been shown to be a potent anti-cancer product. See this vitamin D3 article. Is my good health due to the fact that I’ve been taking 8,000 to 10,000 IU/day, in divided doses for years now? The point is to keep your level, measured in the vitamin D hydroxy test at 70 – 100 for cancer control.  My level varies between 79 and 102. (Nothing bad happened when I slipped above 100; I just reduce the dosage for a while.)

9. Get at least 15 minutes of natural sunshine in the peak time of the day during the summer months, despite what your dermatologist might say. Just don’t burn!!! Otherwise you are gathering up natural vitamin D the way Mother Nature intended.

10. Bone Broth Soup. (Okay, this is out of order here, but bear with me.) Boil beef bones and chicken soup bones (with and without meat) simmering for 24 – 48 hours. Store in freezer in portioned jars. The soup  should gel when refrigerated. This will provide cancer-fighting nutrients. There is a whole book on this subject by Sally Fallon of the Weston Price Foundation.  Go to their web site for more info: Weston Price Foundation.

11. Coconut Oil and other Fats. After all these years of being told to eat less fat, it turns out these saturated (and other) fats are healthy! You’re supposed to eat at least three tablespoons of organic, UNrefined coconut oil/day, possibly six tbsp/day — all in divided doses to keep the level in your body even. Coconut oil is an anti-pathogen, meaning that it kills bacteria and other germs. This supports your immune system in its fight against the CLL cells. More of your immune system is available. Butter (not margarine, which is a fake, synthetic food) is also healthy and if recommended for every day use. Take care not to overdo. I LOVE coconut oil mixed with toasted carob powder, and tend to overeat this, which tends to make me put on weight… so watch your quantity. You can get too much of a good thing.

12. Alkalize.  Every morning I have a 16-oz glass of filtered water with 2 tbsp ACV (apple cider vinegar) and 1 tbsp organic lemon (my husband juices the entire lemon to make use of the d-limonene in the peel, which is also supposed to be anti-cancer, but you don’t have to do that, of course). At bedtime I have a 12-oz glass of filtered water with 1/4 to 1/3 teaspoon baking soda. These drinks help keep my PH at about 7, which is desirable for preventing and treating cancer. The other good news, you are pre-, post-, or just plain menopausal, is that, at least for me, the baking soda before bed has eliminated hormonal night sweats. Yay! Easier to sleep. Measure your PH level with strips you can buy online or at your local healthfood store. My favorite online supplement/health item source is iherb.com. Very reliable and reasonably priced. (Please note that I am not an affiliate; this is an absolutely NOT for profit site.)

13. Blood test regularly. I really don’t like going to the doctor. I really don’t, especially not to the hematologist where I get to see people getting chemo, and a lot of sick-looking people in the waiting room. It is demoralizing! So what I do is I pay out of pocket for blood tests between visits (which are getting farther and farther apart). I go to Direct Labs and order a CBC and whatever else I think I need. (I have anemia and thyroid issues — and hair issues — as well as CLL.) You place your order online. It lets you know what location(s) local labs are available. You print out your order (requisition is emailed to you), take it to the lab, get the test, and in 24- 48 hours, most test results are available. In my case, my co-pays and deductibles are so high these days that it makes sense to pay out of pocket. If I became concerned, I would go to the doctor. (Just saying.) But in my case it’s been a great way to keep score and get an idea of what’s working and what isn’t. I also mail a copy of the results to my hematologist so we can be literally on the same page.

I guess I will end at Lucky 13. Please post comments on this and other pages, and I promise to get back to you. If you’d like a more personal communication, I can be emailed at cllalternatives @ gmail.com (no spaces). Wishing you good health and peace! – Denise