I am interested in hearing if anyone is using a homeopathic approach for preventative care or actual care of CLL. I am trying to reduce counts by trying this approach but interested to hear if anyone has any luck or can recommend sites to visit for information.
Homeopathic approach to preventative care - CLL Support
Homeopathic approach to preventative care
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BePositive22
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JigFettlerVolunteer
Welcome to our Forum!
I suggest searching the Forum posts for Homeopathy and Homeopathic.
There is a lot of info and comment.
AussieNeilAdministrator
We have just 35 posts out of over 30,000 discussing homeopathy/homeopathic. healthunlocked.com/cllsuppo...
That's a reflection of our community appreciation that while homeopathy had its start when visiting a doctor probably resulted in a lower chance of you surviving your illness than not visiting one, homeopathy has been recognised for decades as a pseudoscience. Homeopathy is the ultimate verification that the placebo effect works for illnesses where your mind can strongly influence your feelings of wellness. Unfortunately that's not the case with CLL 
.
As James Randi points out in the video referenced by Spark_Plug , a homeopathic remedy is unlikely to contain any of the agent used to prepare it. An important part of preparing a homeopathic remedy is shaking it - succussion. The bottle of water you purchase from a supermarket is not 100% H2O, neither is the reticulated water delivered to your home, even after filtering. Water, even distilled water will always contain a small amount of impurities, including naturally occurring gases and some minerals and other chemicals leached out from plumbing used in a filter. As James Randi alludes, how does shaking your homeopathic remedy water know which impurity it should form a memory of? What happens to all those memories formed from everything else with which that water has been in contact?
There is one major (perhaps only) benefit from homeopathy; your risk of side effects is extremely low - about the same as it is from drinking water 
- which, by the way is good for your health and much much cheaper.
Neil
i used acupuncture and homeopathy to help keep my immune system "healthy". I also went to an acupuncturist who was my acupuncturist's teacher. He was able to keep my numbers stable for a year but unfortunately it stopped working & I stopped the formula There were no promises made but I tried.
There is nothing but traditional meds & chemo to help us in my opinion.
Always consult ur hematologist whenever u try something different. Acupuncture helped me during chemo with side effects.
Although potentially not a homeopathic treatment but has anyone had success with RSO/FEPO? I have tried the RSO and although it relaxes and takes your mind off your condition I didn’t get great results. I relapsed after 11 months following B&R completion Jan 2021 and started the V&R treatment from this April. I’ve not had a great summer, off work, sickness, fatigue etc, the norm. Although my numbers are better I have become neutropenic and had to reduce the Venetoclax down to 200mg to try and improve my neutrophils. To me the RSO doesn’t seem to be doing much other than getting me stoned! Not such a bad side effect! So I personally feel homeopathic treatments although not so good at treating CLL it does give you the feeling you are being proactive around your condition and not just being treated. The placebo effect is a good thing as are positive thoughts and a decent diet. If it makes you feel good, do it👍
Sorry, but your short time to relapse could well have been due to your use of Rick Simpson's oil. Per the reference in this post:healthunlocked.com/cllsuppo...
It concludes that "cannabis may encourage the movement of CLL cells from the blood into the nodes, spleen and bone marrow, where they propagate and interfere with blood cell production."
Using FECO (full extract cannabis oil) would come with a similar risk.
Neil
Neil thanks for your reply and the link which I have read. Point noted.
As it happens I have been of the same mind and have now ceased using ( only this week). I had been a recreational user for @40years prior to diagnosis and only restarted this year due to the relapse and. being advised the CLL could be transforming to Richter's. This was discounted following the PET scan which was a positive but I kept on with the RSO. Stay safe everyone and good health to you all.
Thank you for sharing your experiences, so that we can all learn from them. Marijuana and various derivatory products were greatly hyped as cancer cures, RSO particularly so. If you saw a drop in your WBC you'd naturally think that what you were taking was helping. You wouldn't suspect it was making your CLL worse. The paper reporting this effect is fairly recent. Interestingly, we've had other members reporting adverse results from marijuana and its products. Of note, it has been successfully used synergistic with treatment drugs for an acute leukaemia. It just goes to prove that every cancer is different.
Neil
"Big mistake" I was taking cannabis oil in the beginning of my diagnosis and now regret it. I was like many others trying to do something to delay progression or in my mind to find an answer to my illness. I tried many that probably should've not. Maybe my cll progressed because of this.
I sound cynical when I say I have read lots of posts and seen a pattern. So many newly diagnosed people want to find an alternative way of avoiding conventional treatment.
I used to say do the things on your bucket list and live your life. After chemo in 2010 I booked a cruise for my husbands birthday present. Just a few days. We went on more cruises and for somone like me who isnt physically fit enough to do more demanding holidays, it gave us the chance to see many beautiful and interesting places. Covid has stopped me travelling abroad but we have been in English hotels. I am tired and cant imagine doing much.
I worry like others but I have problems with my health and making happy memories is something I would like to do. I have been lucky that I have responded to treatment but if I ate or drank a supplement I would think it worked. I hope you are ok, Anne uk
thanks for sharing Anne. I do have to admit that I stopped doing alt of things I use to do because this disease changed me in a way I can't even explain. Surprisingly I'm ok going forward with treatment and feeling better. Back to living🙂.
Thats great news. You sound more positive and happier, Anne uk
I tried RSO (Rick Simpson Oil) and green tea extract (EGCG) and both actually caused my WBC to increase. I didn't learn until after using them that they had the potential to cause the increase. I'm now on Ibtutinib and doing great. Good luck!
Thanks for the video. I especially enjoyed the description involving the solar system. What a nice way to start my day!
I searched for 2 years for the magic secret diet or supplements.
I found nothing scientifically proven
Reduce stress is proven to help the body! Many ways to do that
Eating a healthy clean diet is also proven to help the body
Exercise is proven to help the body
Practice your spirituality, proves to be healthy
Calquence is proven to work, I’m on it and it is a magic pill
Such a challenge living with this, but after years of adjustment I have to say I am a better husband, father and friend than prior to dx. I sincerely wish you the best and send prayers your way
Hi Teemed ..... My experience exactly . thanks for your post . keep looking up. God bless ! james
When I was diagnosed in Feb 2001 I was told by the consultant that nothing I did could change things. I have been reading this site for several years and many of us hope they can avoid treatment. No one says they lead an unhealthy lifestyle. We are all wondering what we have done to get cll.
Cll was diagnosed and although I was shocked I ended up having back surgery. I had other things to focus on. I began swimming to help my back but I didnt eat any special foods. I was more likely to eat chocolate. It was 9 years before I needed treatment. The moral of the story is that I have never used homeopathic foods and I have had good results from treatment. Fcr for 6 months gave me umrd and 8 years later Ibrutinib worked really quickly. I am on a low dose and presumably in remission. I still worry about my back more and I cant do a lot of exercise. We have always eaten mostly traditional food with fresh vegetables, meat or fish. We dont add or excude food because of cll. I eat chocolate.
My advice would be to forget the cll some of the time if you can and enjoy relaxing exercise or meditation. Covid has stopped me swimming. A run round the park will do you good but it wont cure cll. Stress and worry will trigger it. An infected ingrowing toenail has knocked me for 6. This is my opinion but you can spend a fortune on supposedly wonderful treatments that dont work, Anne uk
so true Anne, I agree. Oh I eat chocolate too 🙂
Welcome to the club you didn’t ask to join. There is nothing wrong with hoping for a better way to live with CLL but so far, there is no cure, only treatment.
Dr. Google, as we light-heartedly refer to medical advice online (even though this too is an online forum) may provide false hope that by eating or drinking certain “natural” items, that you can be “cured”. Sadly, there are those who would prey on your fears about CLL. As Neil suggested, you may end up with expensive urine and less money, or worse.
We’ve all longed for a way out. These may range from a mistake in the lab to praying to a higher power. In the end, we all take steps, some large and some small, to accepting our diagnosis.
I liken it to learning that my youngest son has Down Syndrome. He has the “Cadillac” of disabilities I was told. At the time, I had no idea what that meant and I didn’t want him to have any disability. Now that he is 30 years old, I understand why he is lucky, why our family is lucky. He is happy almost all the time. He finds joy everywhere he goes and in everyone. People seek to be around him because they feel better in his presence.
In time, you too will appreciate that your cancer is rarely a killer. Rather, a companion that sometimes gets on your nerves but won’t go home.
Patti
Beautifully penned. Thanks for you reply. 👍💚
tthank you for sharing this Patti.
Thank you for this message. I am slowly coming to terms with it.
Hi I have been on W&W for 13 years and was diagnosed aged 56. I use homeopathy successfully for general problems eg kidney stones, thyroid problems etc. I have been taking Beta Glucan for years and 500 mg daily has seemed to steadily bring my white cell and lymphocyte count to around 80. I started, last winter, to get a constant cold and chest infection from October until April and tried several antibiotics but non of them helped. I have had many winters with constant colds and chest infections but antibiotics have always worked before. My haematologist couldn’t suggest anything that helped. Eventually I decided to double my Beta Glucan to1000 mg daily and double my pro biotics daily. I soon began to feel quite a lot stronger and the chest infection cleared up completely. I have stayed with this since April this year. My counts came down to the 40s. I had a successful hip replacement 3 months ago and haven’t had a blood test since. I also take Spatone 3 or 4 times weekly as I suffer from fatigue and this seems to help me greatly. I tend to have quite bad reactions to medicines in general so I’ve had to find other ways to help myself. Good luck on your journey
That is interesting as I to have fatigue and the feeling of a constant cold about to start. I’ll check out the Beta Glucans, probiotics and Spartone. Thanks for your reply and input👍
Beta glucans, as a supplement?
I take Beta Glucan as a supplement.
in reply to Notmuchenergy
Beta glucans is know to increase lymphocyte proliferation, and in some people is documented to increase CLL. Use at your own peril.
I tried to search to find the documentation, I know it is on this forum somewhere.. AussieNeil has posted about this many times.
Notmuchenergy in reply to
I’ve used for over 8 years and my white cell and lymphocyte counts have decreased from over 250 to mid 40s. I can only speak about my own experience which has been most helpful. I have been on watch and wait for 14 years
in reply to Notmuchenergy
That's lovely!
You are a very lucky N=1!
pubmed.ncbi.nlm.nih.gov/232...
"CLL cells expressing these stereotypic receptors proliferate in response to β-(1,6)-glucan. "
I was diagnosed with CLL in 2009 at age 54. A friend told me of a study from University of Florida that found that açaí berry eats leukemia cells. I started it and took it until I started treatment this year. Could have been coincidence, but I think it might have helped to keep my white blood count below 39,000 for years. Here's an article that mentions it below. You might be able to find the actual study somewhere. Good luck! sunstar.com.ph/article/1912...
Thanks for the info I will look at the link. It’s seems the berries may have kept it in check for a while. Good luck going forward👍
All the best to you!
Sorry, gigiwiggi and Cheltman, but this the typical way supplements are sold, based on referring to in vitro research on a cell line. Basically you observe what happens to some cells in solution when you add an extract from the, in this case acai berries. The Sunstar article referred to a January 2006 University of Florida media release from nearly 17 years ago news.ufl.edu/archive/2006/0... , which unhelpfully lost the link to the study published in the Journal of Agricultural and Food Chemistry, pubs.acs.org/doi/10.1021/jf...
The study used HL-60 human leukemia cells, which are from the myeloid stem cell line, (think cancerous neutrophils) ot the lymphoid stem cell line from which CLL arises."The cell line was derived from a 36-year-old woman who was originally reported to have acute promyelocytic leukemia at the MD Anderson Cancer Center. HL-60 cells predominantly show neutrophilic promyelocytic morphology."
So, not only is this 17 year old research on the wrong type of blood cancer cells, for it to actually have an effect on this type of leukaemia, you have to get high enough concentrations into the blood without causing damage to other body cells.
I can't find any studies on CLL and MSKCC reports that no human studies were done:
mskcc.org/cancer-care/integ...
Neil
I have used homeopathy for other things (not cll) for years and have had positive effects. It is my understanding that Queen Elizabeth II used homeopathy. As a recently diagnosed cll person, I have not yet tried homeopathy. I personally do not believe it is a pseudo science. I have had enough positive experience with it as have other family members. There are national and international associations of homeopaths which list practitioners with training and experience.
As of now, I am looking into alternative treatments. So far, I have found studies from Taiwan of traditional Chinese herbal medicine that have been very positive for CLL.
Homeopathy works by stimulating the whole system to become stronger. I wouldn't discount homeopathy but at this point I am not sure that it is the best for CLL.
The Wikipedia entry for homeopathy commences Homeopathy or homoeopathy is a pseudoscientific[1][2][3][4] system of alternative medicine."
It states in summary, "The fundamental implausibility of homeopathy as well as a lack of demonstrable effectiveness has led to it being characterized within the scientific and medical communities as quackery and fraud.[3][21][22]"
With respect to your correct statement "There are national and international associations of homeopaths which list practitioners with training and experience.", Wikipedia notes Hahnemann's miasm theory remains disputed and controversial within homeopathy even in modern times. The theory of miasms has been criticized as an explanation developed to preserve the system of homeopathy in the face of treatment failures, and for being inadequate to cover the many hundreds of sorts of diseases, as well as for failing to explain disease predispositions, as well as genetics, environmental factors, and the unique disease history of each patient.[19]: 148–9
Per theguardian.com/lifeandstyl...
'Homeopathy is not effective for treating any health condition, Australia’s top body for medical research has concluded, after undertaking an extensive review of existing studies.
Homeopaths believe that illness-causing substances can, in minute doses, treat people who are unwell.
By diluting these substances in water or alcohol, homeopaths claim the resulting mixture retains a “memory” of the original substance that triggers a healing response in the body.
These claims have been widely disproven by multiple studies, but the National Health and Medical Research Council (NHMRC) has for the first time thoroughly reviewed 225 research papers on homeopathy to come up with its position statement, released on Wednesday.
“Based on the assessment of the evidence of effectiveness of homeopathy, NHMRC concludes that there are no health conditions for which there is reliable evidence that homeopathy is effective,” the report concluded.
“People who choose homeopathy may put their health at risk if they reject or delay treatments for which there is good evidence for safety and effectiveness.”'
Neil
hi Neil, what substances?
never mind Neil I looked it up.
I've not explored homeopathy for many reasons already given, about placebo effects and my own doubts about efficacy.
I do believe in the body's innate ability to heal itself and have always been interested in energy healing, spontaneous remission, and even miracles (that do happen). I do my own energy healing practice to add into the mix of living life.
I also understand illness can be complex, and especially CLL. As much as I may want something natural to work - also many smart scientists and doctors want their methods to work and have dedicated their lives to helping people. I respect that and I think it is something in the middle for most people caught up in CLL.
It may be a combination of many things that will work to my advantage. Exercise, diet, good lifestyle, good sleep, reducing stress, energy healing ... and smart doctors. Or maybe it is bigger than me. I don't know. Nobody does.
Wellbeingwarrior, have u had any treatment? How long have u had cll? Do you believe that the pharmaceutical company's want to keep us sick therefore keep us on medications ( for life) instead of a cure for all cancers including other life threatening conditions?
No, I havn't had treatment. A recent CT scan and IgHV test (awaiting results) will help guide whether moving me to treatment meets the current guidelines, and whether I'm mutated - which would make the current "go to" treatment in my country (FCR) a reasonable option for me. I will decline if I'm not mutated. There are a couple of drug trials on the go to consider also.
My preference will always be fixed duration treatment vs long term drug management if I have favourable markers and have a say. If I don't, I may have to re-adjust my thinking.
Do I believe the pharmaceutical industry are invested in making profit from long term drug taking across the general population? Yes, probably. Do I know the best way out of this journey I've found myself on? No, not really.
I do however appreciate the considerably learned people on this site providing information to our questions as we pose them here. Being informed helps me heaps.
thank you for responding to my questions. I agree with your response. I have to put all my trust in my wonderful doctor as i have no other choice. Im going to be on a long term treatment even though would've preferred a short duration treatment. (Which im rethinking)
When I was diagnosed with CLL in 2008 chemotherapy treatment extended life for ~18 months. In the 8 years before I needed chemotherapy the pharmaceutical companies developed new treatments that have extended my life; I am coming up on 7, yes seven, years of extended life past my chemotherapy with no further treatment. Treatment for CLL has advanced well past your bugaboo of pharmaceutical companies keeping me or others on medications for monetary gain.
absolutely.
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