CLL Alternatives

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.
  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!

 

Carob-Coconut Oil Bars for CLL

Posted by: Denise on: May 4, 2016

CarobBarsCLL

Carob Bars for CLL

I’ve been asked by a few of my CLL buddies to share some of the recipes I use in my daily life—in my quest for optimal health. One of the items I make at least each week, and eat nearly every single day are Carob-Coconut Bars. Coconut oil is a natural for anyone trying to improve their immune system. It fights nearly all pathogens (germs), including viruses, bacteria, and protozoa. There is documentation on youtube.com about its ability to improve Alzheimer disease, and perhaps prevent it.

The problem is that coconut oil is kind of tough to eat on its own. Personally, I’m not that fond of the coconut taste. But the good news is that the taste of carob is a bit stronger than the coconut flavor, and carob has its own natural sweetness, so no need to add any natural sweetener to make it palatable.  (I first tried making this with powdered chocolate, and found it was awful without sweetener.)

Ingredients for coconut oil carob bars.

Ingredients:

The ingredients are:

Coconut Oil (I buy organic from Costco)

Carob Powder (I buy from my local health food store)

Olive Oil (organic, cold-pressed from Trader Joe’s)

 

 

 

 

olive oil on lasagna pan

Olive Oil on lasagna pan.

Pour a tablespoon or so of the organic olive oil into a lasagna pan. This is so that the carob bars will be easier to remove from the pan when done.  I wasn’t specific about the quantity of each of the ingredients. This is because all you need to do is use equal amounts of coconut oil and carob powder. I buy carob in plastic containers at one of our local health-food markets. I wash them when empty and use them to measure the amount of coconut oil to use the next time. So, think 2 cups coconut oil to 2 cups carob powder. Simple!!!

 

 

 

 

A tricky thing, though, is that coconut oil is a solid, unless it’s hot out and you don’t use air conditioning. 🙂   Because of this, you need to measure out the amount of coconut oil you need for your batch (figure 2 cups), and heat it on a low flame in a saucepan. It will melt quickly.

coconut oil in saucepan

 

When the mixture is totally blended, pour into your greased lasagna pan.

carob in lasagna pan

pour into lasagna pan

 

 

 

 

 

 

 

 

Put into the refrigerator to cool. (Its’ right in front of the milk.) (Notice all the veggies and fruit in my refrigerator.)

carob bars in refrigerator

Carob bar pan in refrigerator.

 

 

 

 

 

 

 

 

 

Carob Bars

Warming up a bit from the refrigerator.

 

 

 

After at least an hour, remove from refrigerator and let return to closer to room temperature before cutting into squares.

 

 

 

 

 

Carob squares

Cutting into squares.

Remove the square with a metal spatula.

Metal spatula removes squares.

 

 

 

 

 

 

 

 

 

 

 

I prefer to eat my carob bars cold, directly from the refrigerator. When I take them to work, I pack a freezer pack with it. It doesn’t taste as good warm…and the coconut oil gets mushy at room temperature.  That said, I’ve had regular civilians (company who are NOT into natural health!) enjoy these bars when served cold along with walnuts or almonds.

Options:
You could make them with chopped nuts inside. You could eat them frozen. (But be careful, I nearly chipped a tooth trying that; hubby has stronger teeth–no problem for him.)

Conclusion: These are a tasty, delicious dessert for those who have been dessert deprived (like me). I love them!!! I eat six to eight 1-inch bars each day. (They are about a quarter-inch thick. Sorry, I don’t know metrics, so please convert if you’re not from the US.) If you decide to give this a try, let me know what you think.

Wishing you healthy thoughts and life! – Denise

 

 

 

 

 

 

 

 

 

Alive and Well with CLL — 14.5 years now and counting…

Posted by: Denise on: February 19, 2016

Me and Peter with brand new grandson.

Me and Peter with brand new grandson.

I’ve been so busy with my life lately, that I’ve neglected posting here on my CLL web site. The good news is that I’m doing well! My numbers have been improving. I’m stable, and therefore have been able to concentrate on other things in my life: like my work and my grandkids. (Jared, pictured at left, is our fourth grandchild. When diagnosed in 2001, I didn’t know that I’d be blessed to live long enough to see our sons marry and have children.) However, sharing my CLL experience is so important to me. I’m doing well and it’s not by accident. It’s not “spontaneous,” even though that is how a conventional doctor might describe my condition. It might not be “spontaneous remission,” but instead “spontaneous improvement.”

There is so much I’ve done, and so many changes I’ve made, that it will take many, many posts to share everything there is that you can do to try and improve your health. I believe that a lot of what I’m doing would benefit anyone with any kind of cancer—not just blood cancers, and certainly not just CLL.

Unfortunately, there is no one-size-fits-all breakthrough. Not in the conventional medical world. And not in the alternative world. However, (this is a BIG however), the alternatives don’t hurt you. They may be more difficult and require more effort and commitment, but they will cause no harm.

Here is a quick laundry list of my changes:

1. I never eat burnt food or any food cooked at too high a temperature.

2. I stick mainly to organic food, whenever possible.

3. I eat out once or twice a week, tops. This means I take my lunch to work. (I don’t consider this a hardship anymore, but a pleasure.)

3. I ferment my own vegetables, and eat them at each meal, at least a little bit.

4. I drink filtered water and organic herbal tea (specifically raspberry leaf tea, as it doesn’t leach iron and I tend to be anemic).

5. I have a whole orange about 5X/week in my smoothie. By “whole,” I mean the peel and the pith (the white part). The pith contains d-limonene, which is anti-leukemic.

6. I drink a cup of home-made bone-broth soup nearly every day. Several sources have recommended bone broth for leukemia and other blood cancers and disorders.

7. I exercise 5X/week for 15 minutes. On an elliptical, a rebounder (trampoline) and with weights. I’m not an athlete, but still pretty fit for a 60-year old.

8. I get sleep at night!!! It feels wonderful. I shoot for going to bed at 10, and get into bed by 1030 or 11 each night. Since taking a new pill (for my hair, prescribed by an alternative doctor), I’ve been sleeping like a baby. Okay, I’ll amend that: I sleep like a baby without colic. : )

There is probably more, but I’m writing at the top of my head right now. Each of these eight items could be it’s own blog post. And I’ve been asked by my CLL-buddies who write to me to please post some recipes. And I will. I promise. It all takes time and I’m delighted to say that I have a busy (and pretty healthy!) life. But this matters to me. YOU matter to me. So I promise I will get on with it and keep posting.

If you’d like to be one of my CLL-buddies, please write me at cllalternatives @ gmail.com (with no spaces — those are for the mail-bots). And please feel free to post on this article and on this site, because the more we share, the more we help even more of us struggling with CLL.

CLL Alternative Healing

Posted by: Denise on: November 20, 2015

This is a guest post by Eric Clark, a Canadian who was diagnosed in 2012. 

 

CLL Came to Visit

Although I am not a shy person, I have been reluctant to post any good news on the two CLL Facebook groups because they only talk about the medical aspects around late stage treatment. The guy who started the one in Canada warned me not to be fooled by any stories about green tea and the like.

 

The ‘anomaly’ showed up in routine blood work in August, 2012. My GP is friendly but not very helpful. When I met the specialist that Fall – this hematologist is young, female, overweight – I found her much more open to discuss health – but I only see her once a year. (She has since lost weight and clearly cares about her health). She did accept my suggestion of blood work every quarter since I want to monitor this more closely to assess the effects of my own efforts. The official stance of ‘watch and wait’ for early stage Chronic Lymphocytic Leukaemia tries to have you ignore the threat and come back in a few years when there is something to medicate. I have been proactive about my health for many years so I can detach from this attitude and get on with improving life.

 

For the first year – summer to summer – I took stock of my life and expressed gratitude more often for all the good things I enjoy in life. I began to tighten up a number of routines and clean up some issues that needed attention. My wonderful wife, Lia, really rose to the challenge. We shared more guided meditations, personal treatments and she prepared the best healthy food for me. I love our home in the country where we have real darkness at night as nature intended, true quiet broken only by the sounds of birds, animals and insects, as well as fresh air and water. I have failed to identify with this diagnosis but accepted the challenge to rise to a higher level of health.

 

In the second year, I focused on getting toxic people out of my life. This was a tougher realization than expected because I had attracted them or engaged them. It was all about me. They are mostly unaware of, or indifferent to, this change.

 

In the third year, I added an intense focus on supplements to give my body the best chance to improve its defenses and support more exercise. At this point, I had still not met another person with the same diagnosis except the online crowd discussing research, variations of chemo for later stages of CLL and the inevitable nasty side effects. I have avoided bringing my story or ideas for health to those Facebook groups. (More to come in a following post.)

 

Eric Clark – Oct. 2015 – strategy9@icloud.com

CLL ~ Going Wheat-Free Part 2

Posted by: Denise on: November 5, 2015

Here is a second post on going wheat-free (and more) by fellow CLL-er, Eric Clark.


My First Quarter experience with a Wheat-Less lifestyle

In mid-June of this year, 2015, I decided it was time to read Wheat Belly and asked to borrow it from my good friend, John. I convinced myself that buying the book was too much pressure that might actually influence me to make some changes. Aren’t these mind games funny!? While reading the first chapter of Dr. William Davis’ first book, I got very engaged and decided he knew what he was writing about. I liked the fact that he is a cardiologist, not just a frustrated GP who decided to write a book with general health guidelines. This a hard-hitting indictment of medicine, public health, and various disease-centered organizations as well as the food and drug industries. It highlights solid research that has been ignored or buried deliberately.

Weight loss was not my focus but rather the many other possible benefits with respect to the chronic conditions that are too often described as the inevitable outcomes of the aging process. I began to journal various things that I noticed including the following:

*****************

In the first two weeks:

  • a skin tag in my right armpit got very active after being dormant for years – it fell off!
  • Lia mentioned that I no longer had restless legs at night – not kicking anymore
  • torn rotator cuff (of two years) in my right shoulder about 80% improved
  • tennis elbow on the same side improved about 70%
  • no cravings at all – good energy all day
  • lost 6 lbs. – belly shrinking

Second two weeks

  • feeling quite joyful and did not connect this until later – naturally elevated mood
  • my chronically runny nose stopped dripping
  • body odor gone
  • lost another 4 lbs.

Second month – mid-July to mid-August

  • enjoying a wide variety of fresh foods – everything tastes better
  • hungry for less food per day than in the past
  • noticing more in nature on my bike and in my kayak
  • lost another 5 lbs.

Third month

  • lots of physical energy – helped friends move – 8 hours of hard labour
  • decided to discontinue statin drug
  • lost 5 more lbs. – total of 20 in 3 months – 11% of starting weight

****************

My experience to date has cost me no money at all, perhaps it has even saved some.

I don’t feel like there is any reason to stop and revert to any former choices. I am still reading the second book – Wheat Belly – Total Health – and have the companion cookbook too. Lia is so good at this that we have not used any of those recipes yet. Most people are looking for substitutes for familiar, comfort foods like replacing cereal, toast, desserts, etc. so it can be helpful, especially to share with other family members who are not as committed to this way of eating. I have not had any restrictions in the quantity of the many lovely foods available – my body seems to know when it is satisfied.


The larger message is not just about wheat but rather about grains in general 
and how undigestible they really are; hence they lend themselves to more processing than other foods. I chose to give up wheat, rye and barley at first. Then I quickly added corn and oats to the list based on understanding more of what is really going on in my body. Remember to focus on your own motivations and enjoy your own benefits which might be quite a different list than mine. My longer term goals are to prevent bone loss and dementia which are hard to tackle if you start too late. I have watched in my family how these two conditions completely change a person’s lifestyle and former enjoyment in doing so many things in their later years.

Congratulations for considering this approach to improved health and for sharing my adventure.

Yours in health.

Eric

Eric Clark – strategy9@icloud.com

CLL and the Wheat-Free Diet

Posted by: Denise on: October 28, 2015

NOBreadThis is a guest post by Eric Clark, a fellow CLL manager who has graciously offered to write on his like-minded thoughts for this web site:

Wheat-Less Wisdom – #1
As Humans – Homo Sapiens – we have evolved uniquely over the past 2.5 million years distinguished initially by our use of fire to cook meat. For most of that time we moved around, on foot, looking for and chasing our food. We did not eat three meals a day and often had very little food for a few days at a time. Our ‘snacks’ were berries, nuts and wild vegetables(tubers) while hunting for fresh meat. Eating the seeds of grasses – what we call grains – was a desperate measure in times when starvation threatened. We have only done this for 10,000 years, just 0.4% of our recent evolution!

Eating is an expression of individual survival. Sharing meals is a culturally-rich activity. Food is an emotional topic. Our choices are rarely based on true health science. When one decides to return to wheat-free living, it can be a very lonely choice. Institutions in key areas such as medicine, public health, education and the media do not support this choice. In fact, they seem to argue against it. And the many organizations that have formed around various major diseases have all determined that ‘healthy whole grains’ represent an essential component of healthy living.

During the past 50 years grain consumption has increased, as have a long list of degenerative conditions. The science that has demonstrated the direct link between the two has not been featured in a way that would seriously challenge this mass consumption of a food source that is more suited to 4-footed grazers with very different digestive systems. A study of various indigenous peoples around the world reinforces what science has discovered and yet we rarely learn from humans who are considered less ‘advanced’ than ourselves. Although we can boast to be living longer than even our recent ancestors, our quality of life may be severely compromised by several conditions that are described as ‘normal aging’. There is no easy justification for conditions that are occurring earlier in life such as obesity and diabetes.

Our so-called health care is really a disease management system which too many have come to rely on as their quality of life declines. The focus is on finding ‘a cure’ rather than addressing the contributing factors that are within our control. To some, the idea that our basic diet may be the culprit is just too simple to be the answer to these complex conditions. We have handed over our power in other ways so how could we know better than the brightest minds in medicine and food science? Is this just an excuse for not trying something as simple as a dietary change for a few weeks? As that famous line from Pogo says, “ We have seen the enemy, and the enemy is us! ” Eric Clark – strategy9@icloud.com

Alkalize for Health with CLL

Posted by: Denise on: August 15, 2015

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!!!