I often hear oil of Oregano can help with many ailments. Has anyone had any experience with it for the treatment of CLL? I'm not one to off half cocked trying anything and everything looking for the miracle cure. I realize we have an incurable disease but wonder if there aren't things we can do or herbs or supplements we can take that will inhibit progression of our disease. I'm currently taking green tea extract and vitamin D, exercising daily and eating a healthy (but not perfect) diet. So far so good and not in treatment yet and still asymptomatic. I'm always open to hearing what others have found successful. I trust you all more than I do Google.
As always, best to all of you as we we travel our journey.
RK66
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RK66
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The paper was published in January 2011 and while there's no mention of oil of oregano, it does cover a range of drugs and naturally occurring compounds that show promise in slowing CLL progression. The paper explains mechanism of action, previous experiments and trials and lists 80 references for further reading.
Fair warning; CLL cells are easy to kill in vitro (test tube) by many substances but can be very hard to kill in vivo (body). Now that we know that CLL cells are exhausted when they slip into the blood stream from lymph nodes: healthunlocked.com/cllsuppo... , it's plain to me that doing a laboratory experiment on CLL cells taken from a blood sample, not a node biopsy, will return encouraging - and misleading results. When CLL cells are in a protective micro-environment in the spleen, nodes or bone marrow, they are much tougher to kill. And that's without crossing the first hurdle ALL cancer drugs have to pass; getting high enough concentrations into the blood supply without causing collateral damage to organs and tissue.
The Internet is rife with false claims about natural substances that will control or completely cure your cancer. You can easily find very convincing alternative medicine practitioners that will offer you various cures. Anyone that has lived with CLL for long enough can tell you how symptoms can come and go and how judging by blood test results CLL can have active and quiet periods. So it is very easy to convince someone through fortuitous circumstances that doing/taking something has made a difference.
Many of the proposed remedies do have biological action and that means side effects (which can just be an effect that you don't want but someone else taking the same agent does want). Do look after your liver and kidneys if you decide to try an alternative or complementary medicine. I've seen first hand what a high dose of green tea can do to my liver function tests. I still take green tea tablets which appear to be slowing my CLL progression, but followed my haematologist's advice and reduced the dose.
A quick Internet search of 'Oil of oregano CLL' turned up lots of hits, but nothing that I could see from any reputable source. Do you have any promising references?
I take about 1.3g of EGCG per day (8 capsules). Any more and my ALT and AST (liver function tests) jump up rapidly.
Start about a quarter of that and build up gradually to see if you get any digestion upsets. Start say a month before a regular blood test and make certain that your liver function test results remain stable. I was having monthly blood tests when I started taking green tea capsules, so I didn't have to take them for long to find out what I could tolerate. Look for varieties that have high EGCG levels and low caffeine levels - and hopefully one you can trust to have what it says it has and no added fillers or high levels of pesticides or heavy metals...
I would be very caucious about using EGCG, in light of documented pesticide use in China and more recently India...
AussieNeil, is in Australia where I believe supplements are regulated for quality...not so in most countries... manufacturers set the quality control, if any.
Dr. Neil Kay, who coauthored the Mayo study a number of years ago, no longer recommends OTC EGCG for CLL patients, because there is no way of knowing what is in those capsules you buy...
Thanks for the information. It's very discouraging. I hate to say it but I think the outlook for humanity is not good, being that we are being poisoned by pesticides and other chemicals in our food and water, clothing, household furnishings, building materials, air pollution, estrogen mimicking chemicals in plastics and personal care items, etc. It's no wonder so many people have some kind of chronic disease or disability.
Thanks for your response. I have no promising information other than a friend of ours told my wife about an acquaintance of hers who lowered her WBC from 150,000 to 60,000 by taking a home remedy cocktail mixture which included Oil of Oregano and managed to avoid radiation treatment. I have no idea what type of cancer this person has or her other numbers or genetic markers. What I am beginning to understand is that neutrophil, absolute lymphocyte and platelet counts are more important than WBC levels and therefore didn't take the information very seriously but thought enough of it to at least pose the question in here. I trust the knowledge of those who have actually been dealing first hand with CLL far more than the Internet or "of a friend of a friend of mine" stories. Thank you for confirming the old adage "if it sounds to good to be true, it probably is".
Interestingly, my Nutritionist recommended I take 1 tablet a day of Emulsified Oil of Oregano as a dietary supplement &, trusting him, I started it. But when I met with my Hematologist and told him I was taking it, he almost laughed, looked away and smiled and said nothing....which made me feel like I was a fool for trying this so I stopped....Now I hear other people are considering it...tell you what: I've got it here in my hand, and I'll re-start the one a day program and let you know how I do!
Doctors seem to be almost trained that diet, etc., has nothing to do with anything. I remember giving my husband yogurt after he developed diarrhea post antibiotics (I think they now tell you to do this but didnt then). In my son's Waldorf class years ago, truly, the only child who regularly brought candy and other junk for lunch was the doctor's son. I had to hunt down a probiotic that helped my infant grandson's eczema (doc DID recommend probiotic but only the over-the-counter drug brand (different) that didn't work, and when we told him about the benefit of this other special-order probiotic that did work -- indifference. .HOWEVER, I am delighted to say I have recently come across doctors who are more amenable to considering, studying nutritional effects. All this is to say, hold your nose at your doctor's reaction. That was totally inappropriate whatever the effects. Oregano may or may not be of benefit, but this doctor, I bet, has no clue.
Doctors and nutritionist are often on opposite ends of the spectrum. That's OK "it is what it is". I for one am interested in how you are doing with your supplementation. Please let us know how you do.
I don't know about slowing CLL progression but there are people with CLL who take it for colds to avoid antibiotics. Earlier this year I tried it for a stubborn cough when nothing else worked. I had a quick response.
My son's family were having strep nightmares with grandchild, and my daughter-in-law ended up with very sore throat, and she took a few drop of oregano oil (only a few--it is very, very strong and can burn) and it immediately disappeared, according to her.
Thanks for your input. I have a friend who takes Oil of Oregano for UTIs. It's the first thing that has ever helped him. Anti-biotics haven't always been good for him nor has cranberry juice.
I guess what's most important for us all to remember is what's helpful for one may not be good for another. We all should cautiously proceed with the various remedies offered to us. I accept the word "chronic" and realize what we have is incurable. I just want to do what is reasonable to try to slow the progression.
It may work for some people in limited circumstances, but sadly based on the limited assessments to date, it appears that its reputation is considerably better than what was actually found to be the case. Which is a real pity, given the discomfort associated with UTIs and how difficult they can be to eradicate.
Sometimes I get a "UTI" two cranberry pills (600mg total) knocks it out right away without fail for me. I think it may be a case of not letting the bacteria get a hold and over run your system. It has been effective for me if taken right away. It is a cheap fix and does no harm. The important thing is to do it at the first sign of trouble.
It's great that it works for you. As you say, "it's a cheap fix (well we hope it fixes things) and does no harm". So it's certainly worth a try, but if it doesn't work, we shouldn't be surprised...
I too, take green tea SD supplements znx Vitamin D but I was also told to take maitske mushroom supplements. I am including the link to the one I take. I take two daily.
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