CLL Update: RBC, Platelets and Neutrophils
Posted by: Denise on: July 28, 2023
It’s been two years since I posted a CLL update. I’m still alive and relatively well. The picture above is a current snapshot of my six grandchildren, all of whom I’m grateful to be with! Twenty-two years ago I wasn’t so sure I’d get to see my sons married, let alone have children. (Please note the Pesticide-Free lawn sign behind them; I distribute these throughout our neighborhood, but I digress.) I’ve neglected this site, but I’m writing once again because despite the fact that I’ve not had any conventional treatment, I have had issues, and I’d like to share what I’ve done about these issues in case it might help you in your own CLL/life journey.
Back in April I had a comprehensive blood test that revealed an increased WBC (yikes), decreased RBC (double yikes), and lower than normal neutrophils. I might be making light of this now, but it was anything but light at the time. First of all, it came at a time when I was dealing with several weeks, maybe months, of depression. Like most normal humans, I have issues. Lots of them. I’m normally a fairly upbeat person, but… My husband was dealing with a long case of shingles. I was dealing with a rambunctious (and difficult) new puppy, and there are other more personal issues I won’t get into.
As it turns out, the general advice you hear (and that I’ve given myself) is that in addition to diet and supplements and seeking out the newest and latest alternative treatment, a very basic pillar of our health is to find your joy via meditation (relaxation, reading, journaling, etc.). Just as important is getting a consistent good night’s sleep. (I could write a whole article about sleep, and maybe I’ll start posting more than once every two years and write it!) But let’s get down to the nitty gritty about WBC, RBC and neutrophils.
- WBC White blood cells. My count climbed. Not enough to concern the doctor, but it concerned me as I’ve been stable since 2013, a decade! And I wasn’t interested in starting a decline. I went from the high teens up to just about 30. The next test I was a bit over 30. Oddly enough, this caused me to lose my depression and get back to work on my health.
- Platelets. I rarely have normal level of platelets, but they are usually above or at least close to 100. They dropped to 80
- RBC Red blood cells. I have historically had a low RBC (anemia), but it dipped even lower. I don’t recall the exact numbers right now, but they were as low as they’ve ever been.
- Neutrophils. Also lower than usual; in fact, out of the normal range. (My neutrophils are generally normal even though my neutrophil percentage is, once again, always low.
So what did I do?
- For platelets I did some research and ordered papaya leaf extract, which did make for some improvement at my next blood test, where it was up to 90. At first I bought the large bottle you take with a spoon (yuck) and then switched to drops that you put in fruit juice (or that I put in my morning semi-smoothie.) Further research revealed that some of my supplements are blood thinners and I have at least temporarily cut back on them. (Omega 3 krill oil, vitamin E comes to mind. Also reducing vitamin D3 back to 5000 IU/day)
- For my RBC/anemia, I started to take chlorophyll drops (Amazon/iHerb, etc.), also into the fruit juice or semi-smoothie. (Semi-smoothie is all the ingredients stirred in a bowl rather than mixed in the Vitamix. Delish!) So far, RBC has been improving as well.
- Neutrophils. I was already taking OM mushroom powder, but I added at first Maitake D Fractions, and after that bottle was finished, I added Maitake powder which I’ve found at Walmart online and on Amazon. My neutrophils returned to normal. Yay!
- I’ve added more probiotics, Dr. Ohirras, a women’s probiotic, another one from Costco and I ressurected a bottle (new and still good) from my cupboard from Dr. Gundry.
- With all these changes, my WBC also dropped a bit. (I want it to drop more, but I’m currently in my be-patient mode.)
All these changes have made a difference. In general my numbers have all mostly improved. I will test again in September (October the latest) to see how I’m doing.
Other changes?
- In addition to working at our family business about 25-30 hours a week, I’m a poet and writer. I had decided that enough was enough and I stopped writing. Hence the depression. (How thick am I! I should have known that was perhaps the major cause of my depression.) Once I decided to start writing for “fun” again, my depression totally lifted. Weirdly enough, or perhaps appropriately enough, two publishers reached out to get permissions to print one each of my poems in upcoming textbooks. Trust me, this is not a living, but it IS gratifying. And I had already given up on this. Duh.
- Sleep, always sleep. I make a bigger effort to get into bed by 10 or 1030 which makes it less likely to have insomnia.
- I shared my troubles with Jay Blatt, another CLL buddy who has a great Facebook page (CLL Survivors and Thrivers) and he made many helpful suggestions, some of which I’ve shared above.
So, in this age of disclaimers let me remind you that I’m definitely not a doctor or a medical professional. I am a woman who was diagnosed with CLL 22 years ago and who has managed to be well with minimal medical intervention (only took IGG infusions for a Covid episode). This is not medical advice; it is a sharing of my experiences. To be honest, all of us are different. If you make any changes be sure to get tested or seen by a medical professional at least once a quarter to make certain that you’re on the right track, and that your changes are helping and not hurting your health.
If feels good to be back here sharing once again.
Wishing you the best of health! – Denise
CLL: My Personal 20th Anniversary
Posted by: Denise on: July 9, 2021
with one of my six grandkids, having a grand time in the air via a pink elephant!
Celebrating My 20 Year Anniversary of CLL
I remember vividly when I was first diagnosed with CLL at age 46. It was July 2001, shortly before our national disaster. At the time, my brand-new oncologist told me that if I was lucky, I might even live for twenty years. Well, I guess I’m lucky, because here I am. And while CLL has definitely been a life-changing diagnosis, it has not been a quickly life-ending diagnosis, as I thought at the time. In 2001, chemo was the first line of action. And the research I looked up did not look promising. The researchers congratulated themselves on increasing survival time from 1 year to 18 months, calling that a fifty-percent improvement. Yikes! And the quality of life for those taking that chemo sure didn’t enhance those extra months, I’m sure. So, I was a terrified skeptic.
Of course, not everyone is dealt the same cards. Some people get their CLL diagnosis when they’re way beyond watch and wait (W&W). With impending threat to life, they ignore the stats and take their chances, and who can blame them! But from what I see on Facebook these days, there are a lot of us on W&W, and this gives us options. Better yet, it gives us time. Time to make a plan and to make changes. Better yet, there are many non-chemo treatments on the market today, some of them even advertised on TV. I’m glad they are available, and at the same time I’m grateful I don’t need that as yet.
To be honest, it took me a couple of years to stop feeling sorry for myself and get started on working on my health. I’ve learned a lot, met a lot of wonderful people, and in what I hope will be a short article I will share my experience.
Step 1: Learning about EDS
My husband and I talked with a stranger on a flight home from North Carolina (I’m in Michigan), and she told us about going to an alternative practitioner who did EDS, a form of electronic screening or testing to see what was wrong with you and what you needed to get well. Because of this conversation, I went to Ellen, a local nutritionist and alternative practitioner. I didn’t much like or believe in the testing. It was way too woo-woo for my taste. But she did suggest that I had a yeast problem, and further that I had to give up bread and all sugars (and my beloved Slurpees. (7Eleven’s frozen Cokes for those who are unaware). I obviously looked horrified as she said I should do that for a week and return.
Here’s where it gets dicey. She tested me again and said I took care of the yeast. Yes, in one week. But now she could see that I had parasites and needed some of her parasite killer bottles of supplements. I declined, and probably went home for a Slurpee. And a sandwich, and maybe a frozen fudge bar. But here’s the kicker. I had no idea that I would eventually be on a much stricter diet than suggested by Ellen. Today I am sugar-free, gluten-free, dairy-free, and worst of all…low oxalate. It’s a miracle I can find something to eat, but as I’m constantly watching my weight, I guess I’ve been able to meet that challenge. 😊
Step 2: Searching for a Cure
I went to various alternative doctors in Metro Detroit, looking for someone who could guide me to good health. Okay, let’s be honest, I was looking for a cure and willing to do just about anything to get there. None of these doctors provided that golden ticket, but one of them sold books in her waiting room. That was where I came across my first helpful book. I’m sorry but I don’t remember the title OR author, and can’t find it in my house. (My husband now uses books to prop things up on occasion, as I mostly read on my Kindle. If I come across it eventually, I will update this post at that time.) The point of this book was that you could ‘control’ cancer with diet and lifestyle. The start of the book recounted a sign in a wildlife park, “Don’t feed the animals,†the reason being the potato chips and twinkies were bad for their health…and therefore, what about us? To this point, at my hematologist’s word, I was still eating what I thought was a healthy diet. The fact that it included frozen Cokes and ice cream cones (quite regularly) hadn’t changed my opinion of my diet. This is where I started to make change.
Step 3: EMF Remediation
In late 2004, my husband was in the local library, reading a natural health magazine. There was an article about EMFs and it’s affect on health, as well as an ad for an EMF detector (gauss meter). We bought one. I started measuring. It turned out that our bedroom (in which we’d slept for 20 years) measured an average of 7mG (milligauss). The WHO (World Health Organization) at the time listed safe levels at anything under 2mG! We measured again with our electric meter box shut down in the basement. It didn’t have ANY effect on the milligauss reading in our bedroom! Creepier yet, the higher you held the Gauss Meter to the ceiling toward the back of the room (closest to the powerline, just about eight feet from our bedroom), the higher the reading. My husband and I didn’t sleep well that night and moved into a guest room.
Long story short, it took five months to remediate the issue. Detroit Edison (now DTE) did not take me seriously at first, but eventually revealed that they had an EMF department! That alone was no help. The EMF department’s goal was to make me feel like a fool. They didn’t talk about danger, but instead about my “comfort†level, like I was a lunatic. For the full story, see my other website, EMFDamage.com.
Step 4: Macrobiotics
Despite my new and improved “anti-cancer diet†(my words), my WBC persisted in climbing. Keep in mind that I was now eating store-bought organic cookies topped with sweetened yogurt. I had a long way to go, but at least I was on the path. There wasn’t much encouragement on the Internet just yet. At the time, a Google search for “cure CLL†(or something like that) brought up a lot of depressing information about chemo treatments and life expectancy. Or, worse yet, end-of-life planning. So I went to the bookstore and started searching for books. I might have even bought some online. One favorite was, I Beat Cancer: 50 People Tell You How They Did It. That led to many other books about the Gerson diet, the Breuss cure, and others. But the one that stood out, spoke to me, if you will, was The Macrobiotic Way, by Michio Kushi, which led to a trip to Western Massachusetts, to the now-defunct Kushi Institute for a week of intensive study of the macrobiotic way, which includes diet, exercise, and lifestyle.
I was on the healing diet for nearly two and a half years. I saw the most improvement in the first month. But at the end of two years, my WBC started to climb back up. Worse yet, I was diagnosed with both anemia and osteoporosis/osteopenia. I started adding animal protein and smoothies to my diet. To this day, both the anemia and osteoporosis remain a challenge. Although I eventually left the diet, many of the principles remain. I eat mostly organic vegetables. I don’t cook at high heat. I don’t have white sugar or white noodles (or any noodles for that matter), I wield a large knife against my wooden cutting board in the kitchen. Even in non-Covid times, I rarely eat out, and buy a minimum of processed foods. I am mindful of my stress level and strive to be calm. My husband had noticed my change of personality. I’m no shrinking violet (I’m not shy!) but I rarely agonize about things over which I have zero control.
Step 5: Laetrile
While I don’t believe that vitamin B-17 (amygdalin, laetrile) is a magic bullet, I consider it to be one of the many pillars holding up my health. But in 2007, I didn’t take it lightly. I’d read Dr. Phillip Binzel’s book, Alive and Well: One Doctor’s Experience with Nutrition in the Treatment of Cancer Patients. This book gave the stories of patients of his that had survived cancer via (in his opinion) the use of B-17. I was thrilled to read that one of the patients had CLL. Like a detective, I tracked her down, and unfortunately, I was able to speak only to her husband as she’d recently passed away. Of course this was sad, and discouraging, but I spoke with her husband at length. He felt certain that her life had been prolonged by Dr. Binzel and his protocol. He also admitted that while his wife took the B-17 and even had it via IV treatment, she found it hard to stick to the diet. Given their experience, I felt this was worth pursuing. Time for another road trip.
My husband and I drove east again, this time to Suffern, New York, to the Schachter Center, where we met with Dr. Jeffrey Kopelson. I’m sorry to say that he died several years ago, suddenly, from a heart attack. While I wanted to have B-17 via IV treatment, he advised against it, as it requires many visits and would have been useless during our three-day stay. Instead, he advised taking 500 mg, 3X/day, starting with one pill a day and working my way up to the full dose. I’ve been taking it ever since, and order mostly from TJSupply.com. I’ve heard good things about ApricotPower as well. Read more HERE about how Laetrile works.
Step 6: Ultraviolet Blood Irradiation
This was probably my most exotic treatment to date. I found a doctor about an hour and half away, near my alma mater, Michigan State University, in East Lansing. At first, I went three times a week, then two, then once a week, then every other. The process is that a technician inserts an IV needle and withdraws a pint of blood into a glass container. Your blood is then returned to your body, via that same IV, once it’s gone through an ultraviolet light machine they have for this purpose. It was painless (except for the first poke) and relaxing, and I met many other interesting cancer patients. I eventually stopped after examining my lab chart. I keep my own spreadsheet. I determined that while I was no worse, I was no better. It wasn’t worth the time and expense. This was my experience, and I know that this works well for other people. So please don’t be discouraged if you’re considering IVBI therapy. It’s definitely worth a try.
Step 7: Patient Heal Thyself
One thing I learned about going for the IVBI treatment was that I didn’t have to go to my hematologist for blood work. As I was so frequently going to E. Lansing, where they were drawing blood anyway, I’d gotten into the habit of getting my CBCs done there. It was so much less stressful than a trip to the hematologist where you had to see the people getting chemo while you waited for your blood draw. I used to dread those visits.
But it was a nuisance to go all the way to East Lansing. My son, then a nutritionist, suggested that I use DirectLabs. You go online and order up your tests. The cost is out of pocket, of course, but not much more than the copays I had at the time. You receive a voucher and locate a participating blood draw location. Today I use Quest locations but have used Labcorp in the past. Your results are emailed directly to you. I don’t recommend this if you’re not familiar with reading your own lab results. Or if you feel the need and reassurance of a medical professional. I do a mixture of both. I see a doctor once a year, and get blood draws every three months. It’s been working for me. I don’t like to be surprised and this keeps me in tune to what’s happening with my body as I continue with my diet and with often changing up supplements. It’s a good idea to check with your doctor to make certain that this is a good plan for you.
Step 8: Living with CLL
There are many with CLL who have reported that they have been totally healed from CLL via natural means. I’ve spoken with three of them, all men. I’ve read about two more. This is wonderful and an inspiration to all of us. It can be done! There is a path, but it is our job to find it. Unfortunately, this has not been my experience. I still most definitely have the diagnosis of CLL. Every blood test proves it.
However, and this is a big however, in some ways it doesn’t matter. I’ve changed up my lifestyle and my diet. I’m ever watchful of my lab work. I eat virtually zero processed foods and nothing (zip,zero,nada) foods made with white sugar. Ever. It’s not even that big of a challenge anymore. It’s just the way I live. But while I’ve been working on this, wonderful things have happened. I’m still here and living my life. I’m still working. I’m still writing and even drawing and illustrating these days. Best of all, I’m still here with my husband and two sons and their families. And as you’ve probably seen, we’ve had six little additions to the family over the last eight years. Six grandchildren! Such an unbelievable blessing! I am grateful every day. If anything has been worth all the work, and all the work to come, it would be this.
Step 9: Sharing
I really left out a step. I believe that it was in 2011 that I started my web site, CLLAlternatives.com. I was worried that I would depress the hell out of people if I died and therefore stopped writing. But it’s been nine years since then, and here I am. Sharing has enabled me to meet and enjoy the friendship of countless CLL Buddies. I keep in touch with people from Ann Arbor (45 minutes away) to London, Spain, Canada, Washington, D.C., New York, California and Florida. There are so many more! Some of these contacts have been fleeting. Many of you I consider to be friends. We are all bound by this terrible and shocking diagnosis that turns into something we can live with. I truly love you all!
As usual, I’m thinking of many more things I could say, but this is long enough. I hope you are inspired to keep on keeping on. Keep up your diet, your lifestyle. Keep testing out supplements and make changes as your health dictates. Check in with your doctor, but also remember that you are the final decision maker of your own health.
Wishing you all the best of health and happiness! – Denise
CLL and Covid 19: A Personal Story
Posted by: Denise on: March 12, 2021
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:
- 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.)
- I believe I worsened in the hospital because I was not allowed to take all my immune-enhancing supplements.
- I was tested and do have the antibodies for Covid.
- 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.
- 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
Posted by: Denise on: August 28, 2020
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.Â
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.Â
CLL Covid-19 Update
Posted by: Denise on: August 3, 2020
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:
- 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.
- 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.
- Supplements. I’ve added to my boatload of supplements. Time for a list within a list: a.) Quercetin with zinc is supposed to be the next best thing to hydrochloroquine. The recommendation is to take it as soon as you suspect symptoms. I take it prophylactically. Which means I take it all the time, ‘just in case.’ I believe it fortifies me and keeps me from getting ill to begin with. I have no discernible side effects.
b.) Beta Glucan. Beta glucan with l-lysine. Read the beta glucan article for information about this immune enhancer, which I ‘m now taking regularly. I take the product that includes l-lysine, which is an anti-viral I’ve used before to successfully get rid of cold sores. c.) N-A-C (N-acetylcysteine) Here is an article that includes information about N-A-C, as well as many other helpful supplements. I’ve been taking N-A-C for over a year now to help prevent hearing loss (along with other supplements –ai yi yi, I do take a lot!) It does help for that as well.
Please keep in mind that these supplements are just that…supplements. I still keep to a healthy diet with no added sugar, etc., etc. Get sleep, exercise, clean water, clean air, reduce stress (when possible), and all that other healthy stuff. Read through this blog for more of that.
The bottom line is that I’m treating the pandemic, now, the same way I treat CLL. I take precautions, I stick to them like glue. And then, I just live my life. It feels a lot more normal.
What are you doing to make yourself feel safe during these crazy times? Please write and let me know.
As always, wishing you the very best of health,
Denise
CLL Alternatives Gets Updated Look
Posted by: Denise on: June 19, 2020
I’ve been working on CLLAlternatives since November 2010, and I thought it was time for an updated look! The man you see picture with me is my husband, Peter. I’m sure I’ve mentioned him here and there. But I should mention him a lot. He has been my partner in wellness since I was diagnosed in 2001. He wakes up early to set up our home made chicken soup, sauerkraut, dehydrated kale chips (yum!) and more. Whatever diet restrictions I’ve had over the years (and they have been compounding lately), he sticks to it with me, at least during meals. Let’s just say I really appreciate everything he does. For some weird reason, it seems he wants to keep me alive.
The picture you see was taken by a volunteer at the Marietta Museum of Art and Whimsy, in Sarasota, which I highly recommend if you enjoy smiling. We visited last December. It is, of course, closed at this time because of the pandemic. But this, too, will pass. If you find yourself on the gulf coast, try to make time to go there!
In addition to the site, I’d like to update you on my health. I generally have blood tests every three months. Because of the COVID-19 pandemic, I delayed until just last week for seven full months. While I kept to my diet and supplements, I have to say i was just a little nervous about the results. Fortunately, they weren’t so bad. While I’d always be thrilled to find out that I’ve finally reached full remission (smiley face here), I was pleased to see that I’m still bobbing along in my low 20s WBC. I would prefer the mid-teens, but after all the stress and worry of the pandemic (which is still ongoing!)I think I’m doing okay.
I did put on a few pounds while working from home, despite all efforts. It’s just too easy to migrate over to the kitchen when you’re getting up from the computer. I did manage to take them off with a concentrated effort to STOP EATING sunflower seed butter and rice cakes. Also to cut down on the amount of nuts and fruit that I eat. Yes, you can gain weight eating healthy food. I just proved it! : )
As always, I will TRY to post more often. I hope this format makes it more clear when it was the last time that I posted. A recent and new reader emailed me to ask if I was still walking the planet because she thought I hadn’t posted for a year or so. The last post was March 2020. So while no one is going to accuse me of posting too often, I do try to check in now and then. I did promise a book, but… all the Google and Amazon and Facebook censorship of all things natural health has been really discouraging. I don’t know if you are aware of the NY Times author whose COVID-19 book was taken off Amazon because it wasn’t conventional enough for the Amazon censors. To be fair, it’s up there now, but only because this author has clout. He’s a best seller. Go ahead and buy his book, just to show Amazon what’s what!
Please write and let me know what you think of the new format. Please forgive me for the lack of a book. (I have written a LOT so far, but compiling it all into a book, not so much just yet.) Please let me know if there is a topic of interest that I can post on this site. We have a much better chance of that happening.
I hope this post finds you hanging in there and doing well. I really care about each and every one of you. We are unfortunately bound in a sense of understanding each other because of this CLL thing we’re all dealing with. I wish you good health. I wish you happiness. I wish you peace. – Denise
CLL & COVID-19: What to Do!
Posted by: Denise on: March 18, 2020
I’m always dishing out advise, so I will share my take on CLL and COVID-19 here. If you have the CLL diagnosis, be careful! I’m not sure we have the immune system to fight off COVID-19. I read one CLL doctor’s recommendation to get IGIV (immunoglobulin by IV) if you get sick, to build your immunity and prevent pneumonia. So keep that in mind to ask your doctor should you come in contact with this virus. I personally do not go in for vaccinations, as I believe they further stress our immune systems…however, get this information from your doctor and make your own choice. This is serious, life-threatening business, and we’re all in it for the long haul.
So what have I been doing? As of last Friday, I’ve been working at home. It feels like I’m hiding out, although I do call girlfriends, and I have nearly constant contact with the people at work. That said, I still feel isolated. I’m not confident about seeing my grandkids (there are six of them now, and I miss them!). Yesterday evening, the president indicated this could last till August, maybe July. OMG! I know I have it easier because I have the house to myself and don’t have to amuse or entertain children. We have heat and electricity, running water with a working hot-water tank, and natural gas. So far, we’ve been able to stock up on the basics. I won’t go into crowded supermarkets, but there is a local health-food store that has groceries, and I wear my gloves and go in and out quickly. There are no more restaurants, no more sporting events, our synagogue closed, schools shut down. Like everyone else, I hate this!
I’ve been ordering my supplements and stocking up on my most important items. I need my Peak Immune and my D’mannose (prevents UTIs). Yes, we have enough toilet paper. LOL My husband always shops for our home and business like a hoarder, and he bought a huge supply about a week prior to the rush, just because. We are a little low on tissues, because apparently hubby shops like the rest of the country and finds TP to be the biggest necessity.
At work, one person called in sick and another came in sick! This is a particularly vexing situation, and world-wide at that. It hit home Monday when one of our newest and youngest employees showed up to work, sick with fever and cough. (Honestly!) This despite two company-wide personal-distance meetings where all were told to stay home WITH PAY. All employees were also given printed materials stating the same. He was tested for COVID-19 yesterday. Our business is 90% shut down; it is a small business with about 25 employees. We’re waiting for his results.
All that said, I prefer to remain optimistic. This situation will not go on forever. When the weather complies, we all can gather outdoors. In Michigan, that won’t be till April, and sometimes true spring doesn’t arrive till May. But the point is that this is temporary.
What can we all do? Do you need the official list again? I’ve added a few thoughts of my own.
Stay home, if at all possible. I’ve been able to get my work done from home, so far. Avoid young children, unless you live with them and can’t help it.
Wash hands frequently. Yes, I know that most people have heard this one ad nauseum. I use lukewarm water and mild soap, so as not to make my hands dry and cracked and vulnerable to germs. Remember also to moisturize your hands frequently. I like coconut oil because its soothing and it kills germs. Also O’keefe’s Working Hands is in all drugstores and is recommended by EWG.org (Environmental Working Group).
Clean your doorknobs and other surfaces. I use peroxide or vinegar, either sprayed or applied to paper towel and wiped. (Mostly peroxide, as it doesn’t stink.) I’ve started doing this every day. Every. Day. (Getting tired of it, but still a good idea.) Clean your car interior, light switches, faucets, handles, everything you regularly touch.
Wear gloves if you go into public to shop. I wear those cheap stretchy gloves from the dollar store and wash them frequently. It’s less crazy looking and more comfortable than vinyl. It’s also still cold where I live, so not a bad plan.
Cough into your elbow.
Bow vs Elbow Bump. According to my alternative doctor, do not elbow bump in greeting if you’re also sneezing into your elbow. Instead, he suggests a Japanese bow, from a distance. If you do get an unavoidable hand shake, wash your hands ASAP immediately after, or use hand sanitizer. (I prefer soap and water.) If you can’t wash or sanitize, keep your hands away from your face until you can!
Get enough sleep. Sleep restores your immune system. I often feel better in the morning no matter what’s going on, so long as I’ve had a good night’s sleep.
Take extra supplements. Zinc tablets. Peak Immune by Daiwa. Garlic pills (odorless, if you prefer). Elderberry (all sold out now, everywhere, but keep checking). Dr. Oz recommends Beta Glucan at 250 mg. There is also Echinacea, Oil of Oregano, and Licorice.
Chicken broth. Yes, mama’s traditional chicken soup is good for the soul – and for the immune system. Home made from organic free-range chicken is best. Simply put chicken in pot with carrots and celery, and maybe some parsnips. Add filtered water, just enough to cover all chicken and veggies. Add sea salt, bring to gentle boil. Once boiling, or nearly-boiling, cover and reduce to simmer for several hours. This makes DELICIOUS chicken and excellent soup. Sally Fallon of the Westin Price Foundation wrote an entire book about the health benefits of chicken soup.
Meditate. My personal meditation is reading or writing, and sometimes sketching. Anything that gets your brain off COVID-19 or any other worry. Anything that makes you lose track of time.
Air out your house. If It’s warm enough, and even if it isn’t…open your windows once or twice a day and let the fresh air in! A good air exchange can help rid your home of some of the pathogens.
Remove your shoes when you come in from the outdoors, particularly if you went to a market. Wear slippers inside, or go around in your stocking feet. No need to potentially track in dirt and possible germs.
Change your pillowcases daily. Or every-other day, if you prefer. This might involve more laundry, but this is where your face spends seven to nine hours each night. Keep it clean!
Know we will get through this. Engage in positive belief. We are a strong country and we will prevail. After that thought, we all need to take care of ourselves and our loved ones.
If you have more ideas on how to be safe, please share in the comments!
As always, wishing you the best of health!
CLL Personal Care Products
Posted by: Denise on: February 14, 2020
Today I’d like to talk about personal care products and how using the right things can absolutely help your immune system keep your CLL symptoms and progression at bay. Here, in simple terms, is the theory behind it, in case you or a loved person is new to fighting leukemia or cancer. Our immune systems have a big 24/7 job. The first purpose of the immune system is to fight off pathogens, things like bacteria, virus, fungus and the like. When your immune system is instead clearing toxic matter out of your body, it overloads the system and makes it harder for you to fight off colds…and leukemia. So give your body a break!
In modern times, our immune systems are also tasked with fighting off toxics and other nasty things in the environment. So if you’re spraying your home with pesticide because you’re not fond of spiders or flies (or some other pest), you are putting a burden on your immune system, which has to make an effort to clear the toxins out of your body. Some of the toxins, like pesticides, are obvious.
Other toxins are more subtle and hidden in your self-care products, like your toothpaste and shampoos. Always look at the ingredients on the label. If there are things you cannot pronounce, chances are it’s not a good choice. Too many chemicals!
I would recommend going organic, but that is really not enough. Unless you are familiar with a particular manufacturer and know that their products are ‘clean,’ that is free from toxic ingredients, I suggest you check it out with EWG.org (the Environmental Working Group). This organization tests products and rates them on their website. This is an invaluable tool for preserving your health!
So what do I use? What are my habits. I will share.
Face and body cream.
I use good old-fashioned coconut oil. Yes! I buy the organic tubs at Costco and transfer a small amount into a glass container which I keep in the bathroom. It’s called ‘oil,’ but if you live in Michigan or other northern climes, it’s really more of a chalky oily paste until we’re experiencing deep summer. The trick of using it is to take about a half finger-tip of from the container and warm it between your palms, where it will melt into oil. Then spread onto the backs of your hands and then onto your face and body. Make sure your hands are clean when you start this process.
The ingredients here are one. Coconut oil, and organic coconut oil at that. No need to look this one up on EWG.org. If this doesn’t appeal to you, go to your local health food store or order online your choice of organic oils, such as avocado, jojoba, almond, etc., etc. I used to do that, too, but I’ve learned to love coconut!
Hand Cream.
Yes, in Michigan winters this can be a separate category. When coconut oil isn’t enough, I use O’Keefe’s Working Hands. Yes, it passes the EWG.org smell test and it works! When my hands start getting rough I apply at bed time, when there are a few hours before my hands will be in water. If I wait too long and my fingers start to crack (ouch!), I apply the Sierra Bees lip balm on the finger cracks. Instant relief and it helps it heal. Once again, night time is best for me, as I am a compulsive hand washer.
Toothpaste.
There are people who make their own, and I encourage you, if you are so inclined to look up recipes for home-made. That said, while I spend a LOT of time on my personal care and health, making toothpaste is not my choice. Instead I’ve been using Jasen’s Powersmile. It works well, tastes great, and I’m getting good dental check-ups. Several times a week I wet my tootbrush with plain old peroxide before adding the toothpaste. Over time, it has whitened my teeth, with no toxic effect!
Soap.
I use Dove brand scent-free soap for ‘sensitive skin.’ I tried the organic type made locally by a dedicated organic soap maker, but…over time my plumbing got clogged with the cement created by rinsing my hands in the sink. (Have I mentioned that I wash my hands a lot, maybe too much?) I was told since then that if you use both the organic soap AND conventional soap, the chemical reaction in your plumbing creates the problem we had. So I reverted to my Dove soap. It doesn’t seem to hurt my numbers at all.
Dishwash Liquid.
This one I scout around and buy the brands that have no chemically ingredients. My current favorite is Trader Joe’s Lavendar and Tea Tree scented soap. While it doesn’t totally pass the smell test of ingredients, at least the ingredients are listed! On a Palmolive dish soap my husband bought one time, the only reference to ingredients was “no unnecessary ingredients.†I would have preferred a listing, and haven’t bought it since. Keep in mind…dishwash soap is not applied directly to your skin like hand cream. Still, it’s best to limit your contact with these potentially toxic chemicals.
Fragrances.
I’ve always been allergic to perfume so, so much for that. But, that said, watch out for fragrances in other personal care products. If you check things out in EWG.org, you might notice that the fragrances added to personal care products, soap included, are toxic! If a natural/organic product has lavender, tea tree oil, or other true scent added (as opposed to a chemical substitute), leave this product on the shelf and make another choice. This goes for liquid hand soaps and bathroom spray! (The best bathroom spray is an open window!! Just saying.)
Makeup.
Well, I don’t wear much, even though sometimes I think I should (but not for health reasons J). I use Ecco Bella and Suzanne Sommers products, and for lip gloss I use Sierra Bees (which I find on iherb.com.) Once again, whatever your choice, run it through the EWG.org app either on your desktop or on your phone. Check before you buy!
Shampoo and Conditioner.
Okay, I have difficult-to-deal-with, unruly, prone-to-frizz curly hair. Nothing but the Deva Curl products (not organic) make my hair look okay enough to make me happy. Happiness matters. However, I do get my bloodwork done regularly and if it were a choice between acceptable hair and my life, LIFE would win every time. This product/manufacturer touts that they do not include sulfates, parabens or silicone. This is nice, but they also include many ingredients I cannot pronounce and I’m afraid to look up. This is a conscious choice. I’m pretty much an annoyingly goody-goody Girl Scout when it comes to my health habits. This is my one questionable habit that is always up for change. But thankfully, so far, so good.
Before I sign off, I would like to apologize for waiting so long between posts about CLL! I’m alive and well, in case any who returns to this site from time to time was concerned. The reason for my absence is many. But one main concern of mine is that I felt this site was being sidelined in the search engines, particularly by the big one who (starts with a G and) will not be named.  More than one of you wrote to tell me that this is not true. That my words do in fact reach people who can be encouraged and helped by what I share. So I’m back!
In addition to grandchild number six (who knew! I only have two sons!) I’ve been busy working at my regular job and also on what is probably a less important site that is near and dear to my heart. Perhaps one day I will link to it on this site, which is in great need of updating. All in good time.
If you have any personal care product recipes or product suggestions, please share. I’d love to hear from you!
Wishing you the best of health and a nice, long life! – Denise
CLL: Facing the Fear and Loneliness
Posted by: Denise on: March 31, 2019
I just answered an email from a CLL-buddy who is feeling the fear and loneliness of a CLL diagnosis. She does not want to burden her husband by dwelling on her dark thoughts and worries about CLL, and her friends don’t seem to be any comfort. Of course not! This worries them too, and while they wouldn’t say it to her, knowing that a friend has a potentially fatal diagnosis makes them worry about their own lives, as well as about their friend. So what is a person to do? This was my answer to her:
Dear CLL Buddy,
I do understand how difficult it is to keep a happy face on this when you are so frightened. Eventually, you will feel confidence in yourself and in your health, and you won’t feel so frightened. Believe me, you are not alone in having fear of CLL! Here are a few suggestions that have worked for me.
1. Allow yourself to be frightened or upset for only one day at a time, particularly after a blood test that wasn’t what you wanted.
2. Research. The next day, concentrate on the blood marker that concerns you, and start some research on what you can do about it. Look up supplements and herbs. Make a lifestyle change, etc.
3. Have fun! Find time every day to do something you enjoy that is relaxing and gets your mind off of CLL! Read a book, go to a funny movie, visit with a friend (and not talk about CLL) maybe shopping or an art museum or something that you find fun (and gets your mind off the CLL).
4. Find your own personal meditation. I’ve tried meditation tapes (now they would be CDs or better yet, mp3s). This wasn’t for me, but many people find relief in this. My personal meditation is reading novels or writing, or even drawing. I have sketch books, and I find that when I’m sketching, I’m not thinking of anything but the pencil and sketchbook. I lose track of time. It is wonderful! Think back to childhood and what you enjoyed doing that made you lose track of time. Give yourself a gift of figuring this out, and then act on it!
5. Get a good night’s sleep. Make your bedroom light-proof so you can get a good sleep at night and make your own melatonin. Nothing makes you feel better than a good night’s sleep!
6. A new watchword: you are NOT about to explode! Any doctor that would see you today would send you home and then go about his or her business. You are not in imminent danger! Enjoy today! None of us know if there is a tomorrow (we get hit by the bus, etc., who knows?) So why waste today? Enjoy it! It is a gift you are squandering on worry.
7. Recognize that you can gain control of your health. It wasn’t until I became Macrobiotic (ironically, I am no longer macrobiotic, but still…) that I started to see the control I could exert over my CLL diagnosis. After one month of giving up all processed foods back in 2005, my WBC dropped back to 14, where it had been at diagnosis. While I’ve moved on from Macrobiotics, the lesson learned was that I COULD get control of this CLL thing. Since then, I’ve also learned that healing is all about the gut, the digestive system. Work on your digestion and you are working on your health! I’ve not been able to get to where my blood work indicates I’m CLL-free, but I am back in stage zero.
8. Seek out a therapist. If all of this leaves you worried still, see if you can find a therapist. There is nothing to be ashamed of about this. You are facing down your mortality, and we don’t like to do that. It is crazy-making. Back in 2003 or maybe 2004, I was constantly crying with worry and wondering how my boys would grow into manhood without me there. I worried about my husband. I cried about never meeting grandchildren. And see, all those tears were a waste of energy. That said, I DID see a therapist at that time, and it really helped me.
What I learned from him at that time was that I had to take action. Until that point, I felt like I was a victim; I had this CLL diagnosis and I believed it was too late to do anything about it. Damage was done, and I had to accept my fate. Now THAT was crazy! There was so much I could do, but talking to this therapist helped me see it.
If you continue to be depressed, please find someone who might help. If they make you feel worse, find a different therapist. But do try all the other items above, first.
And I AM here for you. So please write whenever you need to. I do truly understand. I’m wishing you radiant health and a wonderfully happy day! Love, Denise
PS Writing about your worries here, on the site, really helps others. We’re all in this together!
CLL: Mushrooms and Neutrophils
Posted by: Denise on: March 8, 2019
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