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
20 Responses to "CLL: Mushrooms and Neutrophils"
November 3, 2019 at 11:01 pm
Hi Denise,
There has been an interesting change since starting on the Peak Immune 4 capsules, my Neutrophils have settled at 4. another obsevation is that on looking to resupply other companies has Peak Immune 4 out of stock yet Nutrinet could fill the order.
My lymphocyte count has dropped to 6.7 and the Trial team now tightened the parameter to 1 – 4 as opposed to the 4 – 11 at the beginning.
I have making your carob powder/coconut oil chocolate, apart from slight increase in carob powder and little less crushed nuts, it is a great recipe.
Go well
Terry.
May 11, 2019 at 3:32 pm
Hi Denise,
My recent blood test results showed a steady increase in my WBC. It has gone from 20.7 in Jan. 2017 to 65.4 currently. A few months ago, I started taking Colostrum (also taking mushroom supplements in capsule form) and I noticed my Lymphocyte percentage is 88% versus 80% on the previous test. My doctor has often told me to keep an eye on my Lymphocyte Absolute numbers. I’m concerned because I understand you don’t want the numbers to increase. This most recent test showed an increase (57.55) while the previous test was less (45.20). Any suggestions what I can do to bring the numbers down?
Thanks
May 13, 2019 at 12:05 pm
Hi Marsha, We are all facing this challenge. Unfortunately, the answer is comprehensive. The fortunate part is that it is do-able. The challenge is: moving your numbers (in the right direction) is a matter of adding in good things (colostrum, B-17) and also taking things out (toxins, stress). Have you gone over my list of what to do when diagnosed? I’ve just reviewed this myself and I see that I’ve been remiss about exercise (I’ve been injured a few times in the past few months. Both knees, my elbow, and earlier, a rib injury) (evidently, I’m a klutz). My WBC and lymphocyte went up at my last visit. (WBC up to 21.7 from 15.1 a month earlier) So I’m concerned. The highest I’ve been is in the mid 40s some time in 2012, and I don’t want to go back up there again.
What you have to do is ask yourself what you’ve done differently since your last blood test. Taking colostrum is probably NOT the reason your WBC increased. Highly unlikely. How has your diet been? Have you been on a trip? How about your stress level? Your sleep? Exercise? Like I said, it’s comprehensive. There is no magic bullet, as much as we’d like it to be that way.
In my case, over the past month, not only have I not been exercising, but I discontinued many (many!) of my supplements after a consultation with a nutritionist. I was concerned about my kidneys (long story, which I will shorten here) and that is why I was willing to make a drastic change. It turns out that a subsequent urinalysis showed that my kidneys are in fact fine. But I kept on the new lower-supplement path for the remainder of the month. Not only is my hair falling out (as it did before I took ALL these supplements), but my WBC spiked (see above). I am now back on most of the pills, and I’ve resolved to do whatever exercise I can, perhaps a fast walk every day would be better than nothing.
Back to your concern. Please think hard about this past period of time and see if you can find anything you did differently, or perhaps how you might institute some new protocols (more sleep?) and see how that effects the next blood test. I also find it personally helpful to supplement my doctor’s blood tests with those purchase on my own (out of pocket, but worth it!) at DirectLabs.com. The more frequently you test, the more you can get a handle on what works and what doesn’t.
Also, it’s my watchword: You are not about to explode! I know firsthand how hard it is to deal with this. I used to lapse into jittery anxiety and depression. But we are blessed (even if it feels like a curse) with time to deal with this and make changes. For me, it really helps to be able to take charge, make changes, and not go meekly to the doctor for a verdict. The doctor is knowledgeable, but more in the meds and treatments, not in the natural things we can do for ourselves.
I hope this helps!
All best, Denise
PS I’ve been having great results with my neutrophils by taking OM brand mushroom powder. Check it out on iherb.com or Amazon.
March 23, 2019 at 3:27 am
Hi Denise,
That is sad about the young mother dying! I hate hearing stuff like that! I’m using the word hate here! So sad!
Thanks for the reply. Helps a bunch! Thanks for tips on eating the seeds too, and yes I will make diet and lifestyle changes along with adding supplements into my plan. Will keep you up to date too on how it’s going from time to time. If my numbers improve and something is working for me I will be more than happy to contribute information and share it with you and everyone that visits your website.
Got one more question for you about supplements if that’s ok? I’m pretty sure you have the answer to this … Right now I order all my supplements from Amazon. It’s really convenient and saves a bunch of time, especially when ordering many different kinds at once multiple times per month. Thing is, one really doesn’t know what they’re getting. That being said, what do you do? Do you have an answer for this? Especially, if one doesn’t have alot of spare time.
March 21, 2019 at 4:55 pm
Hi Denise,
At TJ Supply there are two kinds of 500 mg 100 count B-17s. One in a white bottle (from apricot seeds) and one in like a brownish/orange bottle. Which one do you use?
Thanks,
Gil
March 22, 2019 at 9:50 am
Hi Gil,
The quick answer is: both. For years I bought the white bottle which contains tablets. About a year or two ago, I switched to the capsules, with the more orangish label. There is zero difference. The reason I switched is that in order to make tablets, there is more heat and compression of the extract. Not so with capsules. However, you do eat the capsule, so it’s probably a wash. I continue with the capsules. I’ve been taking these (from this manufacturer) since 2007. It certainly does not do the entire job on its own. However, I’ve recommended this to a co-worker whose friend was dying of pancreatic cancer. It did help her live an extra year beyond what her doctor expected. I don’t believe she did anything else to change her diet or lifestyle. It only bought her time. (And she was a young mother, which is so sad.) However, combine the power of this supplement with diet, lifestyle and other herbs, supplements, etc., and you have a good pillar to retain and maintain your health.
By the way, my husband eats the apricot seeds every morning. His father died of lymphoma in 1992. My husband is well, but eating the seeds for prevention. They are nasty tasting. There is a method to making them eatable. You hold them in your mouth for some time, several minutes, between your cheeks and teeth, letting the saliva soften them. When them seem soft enough, you can chew them and they are at that time barely acceptable (in my opinion) to eat. Hubby doesn’t mind the taste when he does it this way. I prefer the pills, which are significantly more expensive. There is a formula for how many seeds to eat. You can google it. But I think about 10 or 11 seeds/day is a good amount.
Interesting, too, is that I’ve spoken with Wayne, a man in Oklahoma, who did nothing but eat the seeds and is living a nice long life span. For a while his name was posted on a site that sold the seeds, and I looked him up. (I am part detective some times.) Just food for thought.(pun intended) : )
I hope this helps! – Denise
March 19, 2019 at 7:29 pm
I forgot to also say, I took cordyceps for a while in pill form. I didn’t think it was working that well then until I started looking at my notes. In any event the brand I was using is Oriveda and expensive. I don’t think I’ll add it again for a while unless my numbers don’t stay stable. I ordered directly from the manufacturer and took forever to arrive. I know it’s also sold on Amazon but I don’t as a rule get my supplements there. I’m sharing just in case someone would like to try it.
Denise, thanks again for this blog.
Nathalie
March 17, 2019 at 3:05 am
Congratulations on the newest addition to your family Denise. Thank you so much for answering my questions. What you say makes all the sense in the world. Looks like I better get to work! As far as your cost for supplements goes, that’s not a lot of money at all considering your keeping your CLL in check. I’ve spent way more on stuff that’s no where near as important as my health.
Thanks Again,
Gil
March 12, 2019 at 6:03 pm
Hi Denise,
I was waiting on this then work happened. I love this post because I have been taking AHCC along with mataike D for a while. It’s possible they’re keeping my neutrophils and WBC at bay. I just started adding some mushroom powder I received for free with an order from Thrive Market. It has wheatgrass, reishi, mataike and something else. Wish I could post a picture but it’s by Amazing Grass. I’ll eat and drink anything to help combat this thing.
You’re right, it’s a good thing to manage CLL for as long as one can. I am hopeful that I’ll be able to keep my numbers down even eradicating it but for now I want to be able to see what works for me.
I also was in contact with Lingle couple years ago. He was strictly vegan though while curing his CLL. Great guy and willing to help.
As always, I enjoy and always learn something from your posts.
To Great Health.
March 15, 2019 at 1:11 pm
Thanks, Nathalie. Exciting to hear that mushroom is working for more than two of us! The other interesting thing is that when I was Macrobiotic in 2005 – 2007, initially my WBC and other numbers returned to where I’d been when first diagnosed. But later they came back up (and down) to the wrong places, and I developed other nutrient-deficiency problems with low iron anemia, osteoporosis, gum recession (yikes). I do much better as an omnivore. I eat one or two decks of cards (volume) of animal protein each day.
I learn from everyone’s posts as well! All best, Denise
October 15, 2019 at 11:45 pm
Hi Nathalie,
How did you get in touch with David. Can you share his contact info? I tried emailing the one he posted in an article but it didn’t work.
Thank you
Laura
March 12, 2019 at 12:16 am
Thanks A Bunch Denise!
What would you say you spend monthly (ball park) on your supplement protocol?
Also, how long (roughly) were you on your protocol when your wbc began to drop?
And what supplements were you on at that point in time when your wbc started to drop?
Thanks again,
Gil
March 15, 2019 at 1:27 pm
Hi Gil,
I spend a lot! I know that’s not specific. I spend on supplements and also out-of-pocket for my blood draws at DirectLabs.com, because I really, really do not like going to the oncologist! Also, in terms of blood draws, a direct pay is about the same as my co-pay, after the insurance company decides what to pay for the test. But back to the supplements, what I take for CLL only is at least $400/month. I know it’s a lot, and I’m grateful I can afford to take these — and experiment with others. (I also take supplements for my general health, unrelated to CLL.) However, the most important of those that I take include 9000 IU of vit D3 (inexpensive) Peak Immune (about $2/day at 3 pills/day), B-17 (about $2.50/day), mushroom powder (about $0.30 a day and technically a food, but I’m counting this as it’s for medicinal purposes.)
Yes, the cost can be daunting. I will quote Hessel Baartse, one of the CLL defeated, who said that yes, this costs a lot, but so do funerals. By the way, I read those words on his web site years ago (seven years, eight years?) and he is still alive and very well. It is an expensive imposition, but if I couldn’t afford to experiment as I do, I’d start with the three above and see what happens.This is a good question that you pose. It takes time, energy, persistence, and yes, money, to work on beating CLL at its own game. For me, it’s worth it.
I hope this is a helpful answer. I welcome follow-up questions.
– Denise
PS I apologize for taking so long to answer. My number 2 son just had his number 3 son on Monday and I’ve been busy being a grandma!
March 15, 2019 at 1:42 pm
Hi Gil,
I’m sorry I didn’t read carefully, and you had more questions. I don’t recall right off the bat what I was taking at the time of the WBC drop. I know that is when i stopped every eating any burnt food or overcooked. (Each time we eat burnt foods it spikes our WBC, which then has to recover.) I’d also been working at that time at healing my gut. I had diverticulosis, and eating fermented foods and bone broth (or chicken soup) either home made from organic, might have been instrumental in that, as well. Unfortunately, as I’ve written there just isn’t a magic bullet. At least there hasn’t been for me. The process has been excruciatingly slow. It’s gotten to be that so long as I’m well and stable (no spiking or crashing blood markers) I’m happy and consider myself to be perfectly healthy, thank you very much.
Getting CLL was a comprehensive event. I was eating a low fat SAD (standard American diet), I had insomnia a lot. I was sleeping (when I slept) in a room of extremely high EMFs. I had accumlated toxins in my body from mercury amalgams (eight!), and a history of extreme pesticide use by my parents as a child. Also, I was overusing antibiotics for chronic bladder infections, which were also tearing down my immune system.Also, I was hypothyroid and never broke a sweat, which is not good! There may be more causes. Just like a plane crash, it’s not one thing, but many things going wrong, before a plane goes down.
Just like it’s not one thing that grants you this diagnosis, it’s not one thing that gets you well. It’s comprehensive: food, supplements, detoxing (sweat, etc.), clean air, sleep, stress reduction, joy and appreciation, meditation (or something like it). If you just find the right pill and don’t do the rest, it will not work!
There, I will get off my soap box. It’s a big bite to be presented with this, but at least we have it. It’s still 1000 times better than feeling hopeless and counting on modern medicine to fix us. They would if they could. I honestly believe that. But they haven’t quite figured out yet how to help us without hurting us at the same time.
Please let me know if I’ve answered all your questions. I really want to get to the post about the CLL men who’ve in their opinion, cured themselves.
All best, Denise
March 9, 2019 at 12:13 am
Hello Denise,
You pump me up big time when I check in on your website from time to time to see how you are doing. You’re a big inspiration to someone who has CLL such as myself. Thanks for all you do!
In your latest mushroom supplement post you mention you have spoken to 3 fellow CLL’ers (men) who feel they have beaten their disease. Anyway you could post what their protocols were and what they did to get this monkey off their backs?
Thanks A Bunch,
G.
March 9, 2019 at 2:45 pm
Hi G, Thanks for writing and so glad that I help you see the bright side of things with a CLL diagnosis. You are very welcome!I will give you links to two of the CLL success stories here in this response, and will also make a post of the same. We all need success stories to sustain us.Even though following their protocols (I learned from all three!) didn’t “cure” me, they were inspirational to the max. I studied and learned and tried things out, and here I am, 17.5 years into the diagnosis and still chugging along, living life. (Jumping this morning with grandchildren I never knew I’d have the wonderful fortune to live long enough to meet. I cry from the joy of it when I think of it that way.)
Here are the men:
Steve Frier, who vanquished his CLL AFTER having chemo that didn’t work for him. This shows there is always hope! Here is his site:
http://cllhealed.com/
David Lingle, who went the alternative route immediately upon diagnosis. He is on ChrisBeatCancer.com, a site with many interviews with survivors of cancers of all kinds. Here is a link to a previous story on my site in 2013. Check out more on ChrisBeatCancer.com
http://www.cllalternatives.com/2013/10/another-cll-success-story/
Hessel Baartse, who hails from Australia. He used to have a site called CLLDefeated.com (don’t go there; it no longer exists, but thankfully Hessel is still alive and quite well. I see him on Facebook regularly.) He was kind enough to send me a PDF of his former site. He updated it in 2017. I will include a link (I hope to figure out how to do this!) in a new post that I will put up ASAP! If I can’t link to the PDF, I will copy and paste it into the post. I will also write in the post about Steve Frier and David Lingle. So, go ahead and visit these sites, and I’ll get to work on the next post. Thanks for reminding me about these men. Nothing succeeds like success!
All best, Denise
April 15, 2020 at 11:59 am
Here is another one: His name is Glenn Sabin.
A Case of Complete and Durable Molecular Remission of Chronic Lymphocytic Leukemia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4739749/
August 26, 2021 at 12:56 am
Hello!
I’m new to this and CLL. Rai Score 0. Accidentally diagnosed. On wait and watch. I’m told not to take any supplements like mushrooms, cannabis, etc. I’m told that only reliable and credible supplements are EGCG and Curcumin in alternating doses. The logic given is that supplements may help reduce ALC in blood, but lymphocytes home into nodes and spleen, where they are protected and are given multiplication signal making our condition worse.
Please let me know what you feel. I feel that there are a lot of natural alternatives to healing, but I’m asked to keep away from them.
August 30, 2021 at 2:32 pm
Hi, It isn’t the job of of your hematologist/oncologist to recommend supplements that haven’t gone through an approval process. They are part of a system that would frown on their actions if they did make these recommendations, and they could even get disciplined via a licensing board or association. Chances are that your doctor believes this is the best choice. However, there are many safe alternatives. I know that EGCG (green tea pills) and Curcumin have been approved, and I also know that many people have been helped with this. Personally, I’m unable to tolerate either. That is just my personal experience.
If you look into AHCC, for example, (which is one of many, many supplements and modalities out there) you will see that there are many, many studies that indicate it is helpful in treating cancers. Here is one article about AHCC studies; there are many. It’s worth researching online. I prefer DuckDuckGo.com as a search engine, and G00GLE often changes their algorithms to favor big pharmaceutical opinions. As a matter of fact, it happens that G00GLE now owns pharmaceutical companies, making their manipulation clearly a conflict of interest.
But to get back to the main point. Most alternatives do not hurt you. It’s a good idea to try alternative supplements or treatments one at a time and see your results. If your hematologist isn’t open to this, you might want to invest in seeing an alternative MD or other medical practitioner who can guide you. You can and perhaps certainly should discuss this with your main doctor. But keep in mind that your doctor has an opinion, an informed opinion to be sure. But do your research and seek out other professionals until you are confident about the changes you make. And please keep in touch and let us know how you’re doing!