Anyone here have any success with natural treatments?
Alternative/natural treatment: Anyone here have... - CLL Support
Alternative/natural treatment
Written by
LadyWingshot
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34 Replies
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lankisterguyVolunteer
Hi LadyWingshot,-
Like the reply to your earlier posting, here is a link to a long past posting with several replies and comments that have imbedded links to answers for your question.
healthunlocked.com/cllsuppo...
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It will take some time to read them all, but most of the people that have tried natural treatments have found that regular exercise is the most effective natural treatment, and a healthy balanced diet that maintains a recommended body mass index is #2. The remainder have yet to be proven effective.
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Len
Thank you for your response! One of my issues has been weight…only since I herniated two of my disks, 7 years followed with very limited movement…gained 100 lbs, had a miracle happen, back is better and started moving/losing again…then discovered osteoarthritis in my knee, limits walking, some days good someBad, then while hiking a few years ago, fell through a patch of snow/ice that had unexpectedly thawed and broke both sides of my ankle and 3 bones in foot…still have issues with that. Then CLL comes along and after a year I find myself sometimes out of breath after a short walk. Hiking is my peace, always has been…I live in a very
Rural forested area and have plenty of trails of my own as well as public trails I like to hike. Just having difficulty doing that.
Based on your description of how you are doing health-wise, may I suggest you get a copy of Dr Lustig's new book
amazon.com/Metabolical-Proc...
I wish there was a short and concise one size fits all answer to your question. The truth is there is none. I just finished reading the doctor's previous book. It's called Fat chance. I am reading this new one now. I like it. He has a very balanced approach, not taking sides. If you check my profile you will see what I do. But my way is not necessarily the best way for someone else. We are all different. Good luck with finding yours.
There are no known 'natural' treatments for CLL.
The best approach to CLL is a healthy lifestyle - mentally, emotionally and physically. How a person achieves these is very individual.
Although no specific research has been done, a healthy body may well prolong the W & W stage, and be in a more robust state if/when treatment is required.
Good luck with your CLL journey.
Thanks for the response
Unfortunately not. I tried several. But acupuncture helped me with overall immune & any aches/pains etc.
Ty for the info!
AussieNeilPartnerAdministrator
The challenge with determining if natural treatments help when you have CLL, is that even without any use of natural treatments, about a third of us never need proven treatments. Further, there is about a 1% chance of achieving a spontaneous remission in any case. Accurate information on the success rate of natural treatments is challenging to come by, with natural treatment practitioners using anecdotes to advertise their services, so it's impossible to know their success rate. They also can't achieve the level of expertise that CLL specialists do, because of the wide range of health conditions they cover. If any natural treatments provided a reasonable likelihood of success, they would just be a regular treatment.
Per the other good replies, improving your fitness and well being are your best investment opportunities to improve your quality of life and life expectancy with CLL.
Neil
PS, I see from reading your profile that you are having monthly vitamin C infusions. One of our members did this for a year and was only $10,000 poorer for that investment. The evidence for vitamin C helping CLL is not clear, with some evidence that it actually encourages tumour growth. I'm wondering if that's happening for you, given your rapidly growing lymphocyte count? Other supplements recommended by natural practitioners who don't have a good understanding of how CLL differs from other leukaemias/lymphomas (there are around 200), can actually worsen CLL, in particular immune boosters.
Ty for your input. I’ve only had 2 vitamin infusions so far. Once a month, my next one is a week prior to my oncology appointment in Sept. so I’ll see how my counts are then. When you say immune boosters, what specifically are you referring to? I take a lot of immune supportive supplements.
If you are taking a lot of immune supportive supplements, I'm pretty certain that you are worsening your CLL by taking at least some of them and that is probably why your white cell count is climbing rapidly. CLL is a cancerous B-lymphocyte and lymphocytes provide our adaptive immunity. Immune boosting supplements pretty well invariably boost lymphocyte production, nearly always B-lymphocytes, rather than T lymphocytes. That's exactly what you don't want when you already have too many!
My CLL was diagnosed from an investigation into why my immunity took a severe dive. So I was very interested in what natural herbs I could take to stop me becoming ill all the time. Unfortunately, the first two over the counter supplements I took started poisoning my liver and I was still always fighting infections. My CLL specialist told me to stop and that there was nothing I could take to boost my immunity. For the next 12 years I've checked every claimed herbal booster and sadly proved her right. Check if you can find what you are taking against the list I've compiled in my first reply to this post: healthunlocked.com/cllsuppo...
I don't know how knowledgeable your naturopath is, but given the above, I'm concerned for you. Please read this: healthunlocked.com/cllsuppo...
Without lots of study into CLL, naturopaths can be unaware that supplements that might help with other leukaemias and lymphomas can actually worsen CLL.
Neil
Neil, thank you for sharing your expertise 🙏. Now I'm on a low dose of 1 pill/day of Imbruvica, but it's causing me side effects; my hematologist is ordering Acabrutinib. I am also on subcutaneous immunoglobulin therapy called Hizentra in Canada because my immune system doesn't produce enough antibodies to fight infections. Would you consider this treatment, immune-supportive supplement? 🤔
Not Neil, but I can give it a shot. The answer is yes and no because of the different connotations of the word “supplement”.
Anything we take as a booster is technically a supplement. When people talk about “supplements” on this forum, they are generally referring to non regulated so called natural supplements that can be purchased online or in health food stores.
The supplemental immunoglobulin you are on is not an unregulated supplement. You are getting antibodies your body have lost the ability to produce.
I can’t speak for Neil, but I am pretty sure the type of supplemental care you are getting with ivig infusions is not the type of over the counter, unregulated and unproven, supplements he was writing about.
So yes, I would consider the treatment you are getting to be immune supportive and supplemental. But no, I would not think of your treatment as being similar to buying health food store supplements that some claim help restore our immune systems.
Thank you Cajun. I appreciate your giving it a shot! Much clearer now ⭐️
I'll have to hire cajunjeff as my ghost writer, as he has written my serious reply better than I would have done. In fact, my specialist went on to prescribe both IgG infusions (first as IVIG and now subcutaneous) and G-CSF injections to boost my immunity.
If we are to continue this play on words, however, we can consider immunoglobulin therapy both natural and man made. Actually man made in two senses; (1) made naturally by plasma cells in the bodies of our much appreciated men and women blood/plasma donors and (2) processed from those donations.
Neil
Thanks Neil, all info is invaluable to me, because for years, I was on Wait % See and not interested in details. Since I am now on meds, I need to educate myself and your answers are just wonderful. Never too late. I am 4 times 20 and still much to learn😲
Thank you so much for this, I’ll read this later on my lunch…my naturopath had ALL when she was 20, after 2 years of chemo docs told her they had to stop treatment due to danger of her organs shutting down , (she obtained her labs, and she was not in any danger yet) turns out her insurance capped out…real reason treatment stopped. They asked her to come back in three months for a bone marrow biopsy, in meantime she researched everything she could naturally and after taking supplements, for 2 1/2 mos she went for the biopsy and she was clean…doctor was astonished, said, no medical reason for this, he expected her counts to be higher. She was all excited…told him what she was taking and he laughed her out of the office. That was 34 years ago, she is now 56, is the picture of health and has been cancer free ever since that day. Now, she did do prayerful meditation as well, so not sure which worked…but something did for sure.
Based upon the history you provided, my guess would be it was the chemo that worked.
I am a fan of healthy eating and exercise to help in our fight with Cll. The irony of natural supplements to me is that supplements are a largely unregulated industry and supplement use can give the body a very unnatural amount of vitamins and minerals.
It’s hard to overdose or get dangerous amounts of vitamins when we get them from fresh fruits and vegetables.
I can see that your naturopath has a much better understanding of leukaemia than most naturopaths and I can see how inspirational that is to her clients. Even so, Acute LL is quite different from Chronic LL. ALL is a young person's disease and is considered curable, with a very high cure rate. If it doesn't return in 5 years, the patient is considered cured. CLL is an older person's disease (median age of diagnosis is 71) and considered incurable. Some treated with FCR are approaching 20 year remissions and specialists remain reluctant to say they are cured.
Do you have any way of knowing how many/what percentage of people with CLL your naturopath has helped achieve a remission? Is your white blood cell count starting to go down after two months of IV vitamin C infusions while taking those immune boosting supplements?
Neil
My wife was for forty years a health and vitamin nut or so some would have called her. She took numerous high doses of vitamins (A,B, C, D, E and others). In addition she added supplements such as barley greens, green tea, apricot seeds, distilled or spring water ( no fluoride), a super anti-cancer diet with fish, chicken, and very little red meat. It may have made her healthy, but she still got CLL.
CLL is a lost/deletion of genetic information in the different chromosomes found in the white blood cells (WBC). Usually this genetic lost happens in chromosome 11, chromosome 13, or chromosome 17 effecting our immune systems ability to fight diseases, etc.
No amount of diet change or additional vitamins will restore the genetic information lost in these chromosomes. The only effective treatment for CLL so far is the introduction of medications that target and destroy these defective white blood cells whose chromosomes are missing genetic information. The objective of the medication is to destroy the defective WBC before they over populate the healthy WBC required to fight diseases and maintain a healthy immune system.
Okay, I admit too over simplified here and readily welcome help and clarification from Aussieneil, Newdawn, Cajunjeff, etc. to jump here. 🙂
I think you said it very well. Cll is the result of chromosomal abnormalities in our lymphocytes (a type of white blood cell). No diet change has ever been proven to repair our cll chromosomal abnormalities to any meaningful degree, at least no reputable study of which I am aware.
Making healthy diet changes most certainly can help us live longer, that’s generally true for everyone with or without Cll.
As an oversimplified example, if you did a study comparing 10000 people who are obese and eat poorly with 10000 people who eat healthy, the healthy eating group will live longer, on average, than the group with a poor diet.
If you did a study comparing 10000 people who have Cll, are obese and eat poorly with 10000 people with Cll who eat healthy, the healthy eating group will live longer, on average, than the group with a poor diet.
If you did a study comparing 10000 people who with diabetes who are obese and eat poorly with 10000 people with diabetes who eat healthy, the healthy eating group will live longer, on average, than the group with a poor diet.
And so forth and so on. Life expectancies for almost every illness that afflicts humankind can be improved with diet and exercise, to a degree.
I agree 100%, the issues here is not to cure a chronic illness but to extend our lives as much as is possible. I was diagnosed with CLL 17 years ago. My white blood cells continue to grow for the following 2 years, then I started to the practice a cleaner life style, eating more fruits and vegetables mostly organic when available, walking biking on a regular basis and work to improved my sleep routine. I started a meditation routine to control my anxiety. I drink green tea every day. I take some basic suplentes not to cure anything but to give me some energy to help get through the day. I do get very tired from time to time. The results were very encouraging. Over several years I was able to cut the lymphocyte count by half. I am medication free, and my CLL specialist keeps encouraging me to continue doing what an doing since now my blood counts are stable. My objective is not to cure CLL, I understand it’s a genetic condition, but to keep it under control and delay any pharmaceutical intervention as long as possible. My objective is to die with CLL not because of it…
Its wonderful you are doing so well. I think adopting a healthy lifestyle is a good choice.
Lots of people on here have adopted lifestyles changes such as yours who still have their lymphocytes grow, its a hallmark or our cll. I have not seen any real proof that diet choices significantly impact our rising lymphocyte counts. Adopting a more healthy lifestyle sure did not slow my cll down, although I feel much better equipped to fight it.
I would love to be medicine free with my cll, that's just not the reality for most of us with cll. And then there are some of us who will subsist on cheeseburgers and fries and still be treatment free 17 years out.
Hopefully you will fall into that category who never need treatment. I think if we drilled down on what that group who do so well really have in common, it will be favorable genetics over diet. That doesn't mean a good diet is not helpful.
Thanks...you always have a way of painting a picture in 3 dimension.
Eat a healthy diet, exercise as much as you can tolerate, and take the treatments science has developed for us. There are no effective natural treatments effective against CLL.
Yes, I agree that a healthy lifestyle will not treat CLL, all that I am saying is that a healthy lifestyle will allow our bodies to better tolerate a meditation treatment when it’s time. I am well aware that there are no magic bullets with CLL. But I am convinced that we have to do anything in our powers to help ourselves as much as possible. A healthy organic diet won’t hurt our chances of living a long productive life.
There's been a lot of talk on here about overly promising anecdotes re supplements and cautions such as with Beta Glucans (that enhance the wrong immune cells -- Bcells), for example -- as well as discussions re good and bad and dosages on green tea and curcumin. Let me add that there are a number of studies of other supplements that appear to kill our bad B cells. Luteolin, fisetin, quercetin, chrysin, and others all have studies to this effect. Admittedly these are not in vivo studies. Still, they suggest to me that these supplements are likely to be on the right path (rather than some, like Beta Glucans, that are not). Here's one such article. I think reference to others similar appear below the main text. Just FWIW. pubmed.ncbi.nlm.nih.gov/274...
CLL cells in the blood or in vitro are easy to kill. You can readily find papers reporting substances that will kill them in in vitro testing as you have illustrated. The CLL cell membrane is more fragile than that of healthy B-cells. That's why it's common to see the note "smudge cells present" on blood tests when you have CLL. (The smudge cells are CLL cells which ruptured when the blood smear is made to do a blood cell count.)
However, the challenges with finding natural substances that can successfully kill CLL in vivo, which is much harder are basically;
1) Achieving a high enough blood serum level in vivo to kill the CLL. It's often difficult to achieve sufficient absorption through digestion and then the liver might rapidly eliminate what gets through. Curcumin in turmeric is the classic example here. IV infusions can help, but come with risks and are expensive.
2) Achieving that therapeutic dose without causing side effects/adverse events
3) (and this is a particular challenge with CLL), overcoming the stromal protection CLL cells arrange in their sequestered micro-environment in the nodes, spleen and bone marrow. Even some powerful CLL cancer drugs struggle here.
Neil
Thanks so much, interesting discussion. I did not know that about smudge cells except I knew they were abnormal -- went to doc Aug 2019 (before diagnosis) with sudden reactivated ebv (mono). Results confirmed but also showed a smudge cell with a couple other abnormalities and recommendation on report to retest. Doc and doc wife declined retesting on two follow-up visits requesting retest, saying in a couple months I'll be fine. I changed docs. Diagnosed 12/19. There are a lot of things like that I am learning about (like blast cells, which I know are bad but not sure how). As for supplements, yes, of course you are right. But most phytonutrients are, I think, generally healthy to feed to the body, so wondering if we take a bunch, aren't we bettering our chances maybe? Like with quercetin about which there are many CLL reports.
Blast cells are immature white blood cells. A small number generally isn't a matter for concern, but having lots can be a sign of a different leukaemia.
Optimising your nutrition is obviously going to help your body function optimally. When we take supplements to try and reduce our CLL tumor burden, we are generally taking them in much higher dose than what you'd get through just your regular diet. Case studies are littered with patients becoming ill due to taking high amounts of supplements and often causing liver or kidney problems, sometimes to the extent of requiring a liver or kidney transplant and sadly, sometimes even death.
But many phytonutrients are supposedly good for liver and kidneys. In fact, I take artichoke and/or milk thistle supplement most days because I'm also taking green tea extract. I regularly take vitamin C, quercetin, luteolin, fisetin, and some others -- but your point, I believe, is, if I take enough to really do something, it may be too much for liver/kidney. Okay, so I take 500 mg quercetin -- I'm sure that's way higher than I'd ever get from diet. But too high? I guess my next liver test will indicate.
Per: chemicalsafetyfacts.org/dos...
"Nearly 500 years ago, Swiss physician and chemist Paracelsus expressed the basic principle of toxicology: “All things are poison and nothing is without poison; only the dose makes a thing not a poison.” This is often condensed to: “The dose makes the poison.” It means that a substance that contains toxic properties can cause harm only if it occurs in a high enough concentration."
As Shepherd777 pointed out above, CLL cells are almost perfect B-lymphocytes, with just a bit of their DNA missing (e.g. del 17p), or maybe extra DNA (e.g. Trisomy 12). For any CLL treatment to be effective, whether natural or artificial, it has to kill the CLL cells with minimal damage to other body cells. That's the real challenge - doing so without causing side effects (e.g. digestive upsets) or adverse events (e.g. liver or kidney failure).
Neil
Yes, that's the key and the trick. But just happened to google quercetin (because another poster day before wrote that low doses could be bad) and found this -- and it is in vivo! In mouse vivo but article discusses why in mouse vivo should be relevant. Hope so! pubmed.ncbi.nlm.nih.gov/336...
After proving an in vitro benefit, you now have the translational success rate challenge - proving it safely works in people!
translational-medicine.biom...
Remember the huge difference between achieving approval for a new drug and legally selling a supplement.
"Manufacturers can sell these products without submitting evidence of their purity, potency, safety, or efficacy.
For most claims made on product labels, the law does not require evidence that the claim is accurate or truthful. In fact, the FDA's first opportunity to weigh in comes only after a product is marketed, when it can take action against products that are adulterated, misbranded, or likely to produce injury or illness."
health.harvard.edu/staying-...
Neil
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