CLL Alternative Protocol
Posted by: Denise on: December 16, 2010
Here is the list of what I take and what I do, at this time in my life (it has changed many times) to be well and get well. My goal is, and had been, since July 2005, to become cancer-free. Others have done it and so can I. (By implication, you can too!) There is no one path. Unfortunately, we all have to find our own formula. While that sounds daunting, to me it’s a heck of a lot better than counting on one professional who will give you fifteen minutes of his or her time, each visit. You can give yourself as much time as you need! Be your own health care advocate, and you can spend an hour or more EVERY DAY on yourself. There isn’t a doctor alive — conventional or alternative — who can do that for you. You can only do that for yourself.
Between Meals
(before breakfast, mid-afternoon, before bed)
- Univase Forte enzymes, 6 total, 2 pills/3X a day
- Apricot Seed pills (grind and make myself) 4 pills, 3X/day btw. meals
- Natural Thyroid 60mg, 1X, 1/2hour prior to breakfast
- Wheatgrass Juice (I grow and juice my own)Â 4-5 ounces, every morning 1/2 hour before breakfast
- Low Dose Naltrexone 4.5mg, before bedtime
Breakfast
- Actifolate 800 mcg
- Magnesium 200mg
- B Complex 1 pill
- Black Currant Seed Oil 1000mg total – 2softgel
- B-17 Laetrile 500mg
- Vit C 1000mg
- Bioflavinoid 1000 mg
- Vit E 200 IU softgel
- D3 1000 IU softgel
- CoQ10 50 mg ubiquinol (not ubiquinone)
- Primrose Oil 1300 mg softgel
- Calcium 250 mg
- Probiotic 1 gram 20 bill organisms, 12 strains
- Broccoprotect 1
- Regenemax (5mg silicon) 1
- Reduced Glutathione 300 mg
- Iron Pill (Iron Glycinate) 29mg, 4X/WEEK (every other day)
Lunch
- Vit D3 1600 to 2000 IU dry (Twinlabs Allergy D)
- Potassium 99mg
- CoQ10 50 mg unbiquinol (not ubiquinone)
- Zinc Asporotate 15mg
- Iodoral 25mg
- B-17 Laetrile 500mg
- Selenium 200 mcg
- Grapeseed Extract (every day @ lunch, one month on, one month off)
Dinner
- Magnesium 200 mg
- B-17 Laetrile 500 mg
- Fish Oil 1000 mg (Omega 3,5,6,7,9)
- Curcumin 665mg
- CoQ10 50mg unbiquinol (not ubiquinone)
- Vit D3 1000 IU softgel
- Primrose Oil 1300 mg
- Calcium 250 mg
- Joint Ease (glucosamine 250mg, chondroitin 250mg, queritin 250mg, taurine 250mg)
- Vit K2 100 mcg (bone health)
Immune-Boosting Butter
1tablespoon/day (more if I want an extra immune boost)
Recipe:
- 1 stick room temp organic butter
- 1/2 cup organic cold-pressed virgin olive oil
- 10 capsules probiotic
- 10 capsules colostrum
- 6 capsules l glutamine
- 1 tablespoon raw honey (local)
Empty capsules into a bowl. Add olive oil, butter and honey. Blend with immersion blender (that’s what I use). Cover and refrigerate.
D’Mannose
I use this, as needed for UTIs (urinary tract infections). This has been, quite possibly, a life saver. While I still carry a prescription for antibiotic in my wallet, I rarely, if ever, use it. This deserves a page of its own.
Diet
- NO sugar
- NO gluten
- NO white bread
- NO refined salt
- NO processed foods
- NO store-bought baked goods
- NO nuts or seeds (unless powder-fine or smooth paste
What I DO eat:
- YES Organic greens
- YES Organic vegetables
- YES Organic fruit (small amount/day)
- YES Organic grass fed beef
- YES Organic poultry
- YES Organic free-range eggs
- YES Wild-caught salmon and other fish
- YES Organic olive oils and other oils
- YES Sprouted lentils, grains
- YES Almond butter
- YES Rice Cakes
- YES Oatmeal
- YES Organic butter
- YES Raw milk yogurt
- YES Greens/Fruit Juice in my Vitamix
It IS hard to eat out, but I manage. I mostly try to limit eating out of the home to two times a week (total, includes lunch AND dinner).
Exercise
I walk my dogs every day. I exercise for 15 minutes 3X/week on our elliptical trainer. I lift weights 3X/week for my osteoporosis and heart health. I can now run up a flight or two of steps without getting overly winded. Couldn’t do that 10 years ago. It pays to exercise!
Sleep
My goal is to be in bed by 10pm, and to get at least 8 hours of sleep each night. I feel wonderful when I achieve this goal. I’ve read again and again that the sleep before midnight is the best healing sleep. It makes sense. Try this. It is one of the best things you can do for your immune system and your health. It’s free - and you can feel the results literally overnight.
Mindset
Don’t worry. Be happy. I know they have studies to prove it, but who need studies? We all know we feel like crap when we stress out and worry. Racing pulse. Palpitations. Bile in mouth. How good can that be for you?  The experts tell us to meditate. I’ve tried it, and it always feels weird to me. I prefer writing in my journal or reading something relaxing. Either one gets me away from myself, and helps me to relax and stop stressing.
That’s it for now. I think that you can see that it takes a lot of time, effort, not to mention cash, to take care of yourself. Whatever I’m doing is infinitely less expensive than chemo treatments. None of it has side effects. And I feel great. Please write with any questions.
Due to an unreasonable amount of SPAM, I suggest that you email me at info(at)cllalternatives.com if you can’t seem to get a comment posted.
CLL Leukemia Diagnosis: Overcoming the Fear
Posted by: Denise on: November 30, 2010
- In: Lifestyle
- 5 Comments
Now that it’s been over nine years since my diagnosis of CLL leukemia, I have to say that my mental state is quantifiably better than it was July 2001, when I first had to deal with it. It helps enormously that I am still stage one, and have remained “steady” without the help of any conventional therapies. Not a drop of chemo. No prednisone. This despite many harrowing brushes with low platelets, dropping red counts, rising white counts, hematuria (blood in urine) and other freak-out factors.
Like many CLL diagnosis “victims,” I experienced sadness, grieving, easy tears, insomnia, and morbid thoughts. At one point, I even started thinking carefully before investing in something lasting like, say, a leather coat. It might be “wasteful,” I thought at the time. After all, I wasn’t sure how many seasons I’d be around to enjoy it. I was overcome by negative thoughts and FEAR. Fear of dying. Fear of death. Fear of leaving my family behind. This made me overwhelmingly sad.
How I overcame fear: Action! Once I realized that I could not and would not count on medical doctors to keep me alive, this truth set me free. Once I started to take charge of my health, doing all the things you can read about on this site (and elsewhere), my mindset changed. It started with my macrobiotic diet (which I ironically no longer follow) that I felt a sense of calm and peace. I started to know in my heart that I was going to be fine. I was planning to live. That was in 2005. It is now nearly the end of 2010 and I’m still here, living my life, doing what I have to do to be well. But I am also quietly and calmly confident that I am going to be “here” for a long time.
The first step to wellness. So if you are depressed, worried, fearful, or in any way devastated about your CLL leukemia diagnosis (or that of a loved one), take heart! You don’t have to curl up into a ball of worry. There are things that you can do. The more things you try (and measure with frequent blood tests) the better your chance to prevail. Saying goodbye to fear is your first step on the road to wellness.
Due to an unreasonable amount of SPAM, I suggest that you email me at info(at)cllalternatives.com if you can’t seem to get a comment posted.
CLL Leukemia Longevity and Vitamin D
Posted by: Denise on: November 17, 2010
Vitamin D
I’ve been taking vitamin D for several years now for my CLL. But it wasn’t until very recently that it has gained “official” acceptance in the medical world as an important supplement for all those with cancer and specially for those with chronic lymphocytic leukemia. Here is one article and another on this very topic.
My experience. I would like to share my own experience with this wonderful supplement. It is one of the few that I’ve taken that I can rave about. I felt a difference when i first started taking vitamin D3. Take a look at the bottle on this page. This was the brand that first made a difference. My alternative doc told me to take it because I tested low (19!). Prior to taking it, I believe I took about 1600 IU (international units) a day. Now, at doctor’s advice, I’m taking 4000 units a day. I obediently added this to my regimen without a clue of how it would affect my health.
Vitamin D for pain.  Prior to taking vitamin D3, I really thought I had undiagnosed fibromyalgia. I was always in pain. Something always hurt. My arm, my neck, my back, my tailbone. When one ache disappeared, another would take its place. I thought perhaps I needed a shrink. Well shrink be gone, as after about a week on these pills (just 1600 IU), the pain went away!!!! Just before the pills, my tailbone had been acting up from an accident I’d had a few years back, a trip down cement steps on my backside. I remember thinking that I was too young to have to hold onto the arms of a chair or onto a table in order to get up and sit down without pain. But that pain went away — and was never replaced by any other. Think of the money I’ve saved on therapy. : )  There are several articles about vitamin D and pain.  Google it and you will see even more.
Vitamin D and Longevity. If you haven’t read the articles in the links above, please take note of this now: vitamin D3 also helps CLL patients live longer. In case it wasn’t enough that it makes you feel better, scientists/doctors are now saying that deficiency increases mortality. (If you don’t have enough vitamin D in your body, and you have CLL, you are more likely to die.)  Make sure you take D3 and NOT D2 –D2 is synthetic, not what you want!.
Why are we deficient in vitamin D? Vitamin D is manufactured in our skin when we are exposed to direct sunlight without sun block. Yes, I know. Dermatologists have been warning us for decades to stay out of the sun. Maybe that’s helped prevent some skin cancer cases, but the unintended consequences have been terrible. Vitamin D deficiency is responsible for susceptibility to cancer! Even melanoma. (How ironic is that?) Here is a list from the Vitamin D Council.
Get out in the sun. You’ve heard of safe sex. Now have some safe sun. Get out in the sun, every day (when warm enough) for about 15-20 minutes, with as much skin exposed as is legal and practical), and get out before you burn. Sun burn is NOT healthy. Sun exposure is very healthy. Remember when people were told to get plenty of fresh air and sunshine? Both are therapeutic.
Bottom line is check your vitamin D levels regularly, preferably by an alternative practitioner. Here is the information about what test should be ordered and what the proper level of vitamin D should be. The test is the 25 (OH)D test. Your level should be between 50-80 ng/ml, year round. If you can’t get out into the sun for practical or seasonal reasons, then supplement. Give it a try. I hope you have stellar results like I did!
Low-Dose Naltrexone for CLL by Prescription Only
Posted by: Denise on: November 15, 2010
Naltrexone is available by prescription only, whether for chronic lymphocytic leukemia or for any other condition. In its low-dose form, naltrexone is available only from a compounding pharmacy. It is important that you NOT get naltrexone in its slow-release form. You want to get all the benefits of your dosage while you sleep. Here is more information about how to get your prescription low-dose naltrexone.
Getting the prescription. What might be even trickier than finding the right compounding pharmacist is getting the prescription in the first place. Early in 2008, I made a special appointment with my local conventional M.D. with the express purpose of getting a prescription for LDN (low-dose naltrexone). I came to the office, armed with pages of info from the LDN web site. But my doctor, open-minded though she may be, told me that she would confer about it with my hematologist. Fair enough.
Too risky? Weeks later, at my next hematologist visit, this doctor informed me that she and my internist had deemed my request for LDN as too “risky.” RISKY!!! For whom? Certainly not for me!  (Or for anyone with CLL leukemia.)  There are virtually no side effects from LDN. Some people report vivid dreams in the first nights on the pills. I experienced nothing — no side effects at all. I figured that the “risk” was to these doctors’ licenses to practice, as I cannot reason why else it would be “risky.” As compared to what? Chemotherapy?
Find a good alternative practitioner. My next stop was to confer with my alternative M.D. in New York. He gladly prescribed the LDN. I get it from the Hopewell Pharmacy in New Jersey. I believe that he’d recommended it a year earlier, but I’d hesitated to start it along with all the protocols and regimens he’d advised at the time. Long story short is that I’ve been on low-dose naltrexone ever since, with no side effect – and with very stable results.
Has this been my magic bullet? A panacea? I wish I could say so, but I truly can’t be certain. I’m not willing to give it up to find out. Please read more on this site about all the other things I’ve done and that I do to both maintain my health — and to work to achieve cancer-free status.
One more thing. Â If you’d like to read more about how Naltrexone came to be used as an off-label drug (for cancers and MS, for example), read the interview with Dr. Bihari, the man who discovered the extra value of this drug in low dose.
CLL Leukemia and Low-Dose Naltrexone
Posted by: Denise on: November 12, 2010
Low-dose naltrexone is available only from a compounding pharmacy, by prescription.
I like to keep a file of possible protocols (read: cures) so that I have something to fall back on should there be a less-than-stellar blood test. Low-dose naltrexone was in that file for more than a year before I was able to use it for chronic lymphocytic leukemia. Read the rest of this entry »
CLL Diet
Posted by: Denise on: November 11, 2010
- In: CLL Diet
- 5 Comments
There is no such thing as a “CLL diet.” When I was first diagnosed, back in July 2001, I clearly recall the hematologist telling me to eat well, exercise and get a good night’s sleep. Unfortunately, he wasn’t very specific about the diet or exercise part.
In the years since, I’ve become a natural cook. (This means I cook everything from scratch.)Â There is a ton of information about this, but for the purpose of this post, I will outline four important points.
1. Vegan vs Meat
Everyone I know, who has prevailed against the diagnosis of CLL leukemia, eats meat. They’re omnivores (eat plants and animals). If you want to get well, I would encourage you to eat organic meat and poultry — and wild-caught fish. Organic means no hormones, no pesticides or herbicides in the feeds, and no antibiotics.
2. Raw Food
Even if you’re eating healthy meats, the rest of your diet should be fresh, organic and as raw as possible. Raw includes such things as fermented pickled foods, like sauerkraut, yogurt, kefir, etc. Add to that fresh vegetables and a small portion of fruits (all organic). Vegetables should be cooked at low temperatures only, and should be eaten, whenever possible, brightly colored and crisp.
3. No Processed Food
This is a tough one for Americans (and everyone living a high-paced lifestyle). So here’s a thought: slow down. Take the time to shop and cook for yourself and for your family. I used to pride myself on half-hour dinners. Now I feel lucky when it takes me twice that time. Does it cut into my day? Absolutely! But it’s absolutely worth the time. You won’t get well on a fake-food diet.
4. The Way God Made It
I’m not an actively religious person, but I’ve come to realize that the best way to eat is the way God originally planned it. It’s hard for man (woman) to improve on it. This means that an organic baked potato is better than a box of potato flakes or tater tots. Broccoli from the produce section (in its original form) is better than frozen “medleys” drowned in process cheese. Fresh cuts of organic meats, simply prepared at home are healthier than pre-breaded (with God-knows-what!) processed meals. Don’t even get me started on going out. (I do, but only one-to-two times a week.)
This is one of my first posts. I anticipate that there will be many, many more posts about what to eat (and what not to eat) for CLL leukemia.