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How do changes in diet affect CLL treatment? Are supplements safe to use? CLL experts Dr. Michael Keating and Dr. Jeff Sharman respond

How do changes in diet affect CLL treatment? Are supplements safe to use? CLL experts Dr. Michael Keating and Dr. Jeff Sharman respond

Some wise words on the effects of diet on CLL from the well respected CLL specialists Drs Keating and Sharman. Dr Keating was behind the development of FCR and Dr Sharman has provided some excellent blogs on CLL: cll-nhl.com

From the transcript

Dr Sharman "I think that we've talked about fear before, and the anxiety. I think that controlling your diet and controlling your supplements is one way in which patients feel like they can regain some control over their disease. As much as financial toxicity comes up, so does supplements in my clinic. Let me just state for the record real quickly, marijuana does not cure CLL. Just to be clear."

and

"There is a fabulous documentary put out there by Frontline, which is a PBS—it’s called Supplements and Safety. I have a ground rule in my clinic. I will not talk about supplements until you’ve seen Supplements and Safety. It is an unregulated industry." (My emphasis)

Video and Transcript from Patient Power: patientpower.info/video/die...

Previous post on Supplements and Safety: healthunlocked.com/cllsuppo...

Incidentally, a work colleague shared with me how he and some mates sailed a boat across the Indian ocean and ran out of water - but they had plenty of tinned carrots. They arrived in Australia bright orange - just as Dr Keating relates...

Neil

Photo: This unfortunate cyclist got a bit more fibre in his diet than he wanted...

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Thanks Neil.

Love the video and well worth watching everyone. I

Also love carrots!! But not to extreme.

A very apt photo, great.

Sue

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Thanks for the great information. I've learned a lot about supplements on this site and have cut out many supplements I took before my diagnosis and since taking Imbruvica. Some were harming me, and some were just doing me no good at all........so, I've also saved money while improving my health.

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Quit taking the dozen or so I was taking before dx. Now just a D and B Complex daily.

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I do wonder about supplements, but wonder just as much about that "fresh" fruit and produce I just got from the store, the water it was being sprayed with and the city tap water I'm now rinsing them with. The utensils I use for cooking (Teflon anyone?), the soap I use for washing, bathing, the shampoo/ lotion I use, the garments I wear, the materials used to build the place I live in and obviously the list is endless and so no wonder cancer seems more prevalent than ever. Not trying to be "Debbie Downer" just saying, things that can harm us are every where and even the "healthy" stuff like salads and cruciferous vegetables can be harmful to some. Not advocating supplements, just saying if we're going to worry, there's plenty to worry about. So, let's research products carefully, read labels thoroughly, I even research the companies themselves and if it's just some unknown company with a PO box somewhere, I will stay away. I do find that some supplements help me, especially for digestive stuff, but am I taking my chances?? I think we do that, the moment we wake up.

Best Wishes to all!

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All the more reason to look at every aspect of one's life, like you said, when someone has cancer. Everyone should be more aware, cancer or not. The number one threat to the health of all people, animals and the planet are GMO plants and pesticides - glyphosate in particular. Even potatoes are sprayed with glyphosate before going to market. It's outrageous!

My husband has CLL. We were vegetarians before his diagnosis, but have taken it a step further since diagnosed, and eliminated eggs as well. We did eat some cheese before but have eliminated that, and all dairy. Also, we rarely eat grains, and if we do those are also organic. We only buy organic everything, especially critical for fresh fruit and produce. Also, no processed foods. Processed foods are highly refined and nutrient dense. It's like dead energy. Dead energy can not help heal the body.

We have a water filter on our faucet which also filters out fluoride, since our municipality puts that poison in our drinking water. Our shower heads are also mini water filters. And yes, Teflon pans, etc. are unhealthy to use. We have all Green Pans.

I own my own holistic skincare company, so we use handmade organic soap, and sulfate, paraben, and phthalate free body washes and shampoos. Our lawn care consists of organic fertilizer and non-toxic grub control. Laundry soap, dish soap, dishwasher soap, all eco friendly, and non-toxic.

It was recently time for us to replace our bed, and we bought an organic latex mattress, with organic cover and organic sheets.

You get my gist. I think it all matters. I also had my husband start juicing last year, and he drinks that twice a day. I send him to work with bottled alkaline water.

I also have my husband on supplements. He has heart disease as well, and it's important to me that his heart stay healthy and strong. His CLL doctor knows about his supplements, and would prefer he not take any. But, being vegetarians for instance, some supplements are critical to take, but his doctor is not informed. We don't take nutritional or supplement advice from him. Almost all doctors, unless they are a holistic doctor, just aren't trained in nutrition or vitamins and supplements. It's sad.

It's sad cancer doctors aren't testing every one of their newly diagnosed patients for their vitamin D levels for instance. Data has been compiled, and apparently most cancer patients are deficient in vitamin D, yet no one is testing this. Why not? Because pharmaceutical drugs are the only answer?

I believe our bodies are magnificent, and given the right tools (nutrition, etc.) our bodies can heal itself. Sometimes, holistic measures are successfully combined with chemical measures (pharma drugs), and cancer an become a non issue.

It's not an easy road to travel. But we have a guideline around here - if a food isn't nutrient dense and healing to the body, it isn't a food we eat. I think putting in the work is hard. Clean eating, organic eating, daily juicing, exercising regularly, and all of the above can get boring, time consuming, and requires more care regarding how one is living one's life.

The benefits however, outweigh the time and effort. All the effort pays off in being able to be sick-free, feeling great, looking great, and amazing the doctor with how well my husband is doing.

It's my husband's decision whether he wants to take vitamins and supplements and avoid vaccines for instance, not his doctor's. We control our own destiny, and my husband is choosing to be in charge of his health decisions.

I apologize for this long post. I just don't understand why nutrition is so demonized here and in general. Food can heal. Nutrition matters if someone wants to remain healthy and strong. Nutrition can heal the body.

Thanks for letting me prattle on.

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The thing that makes me "wonder" sometimes is to see people with healthy lifestyles get sick anyway and then see others with every vice in the book go on to live full lives.

So, does it mean we're going to get what we're going to get because it's in our genes? Can it be overridden? Well, my money is on you, cause you're certainly covering all the bases :-)!

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I think you can do your best but ultimately you need to manage stress. In my mind it is like the Trifecta. You have genes and lifestyle and then stress.

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I think you have made very valid points and many changes you have made I did as well but maybe too late. I had just gone organic a few months before my diagnosis. I stepped it up a notch and hope it will help. I use a filter on my water but was thinking about alkaline water as you said (but I don't want to use a plastic bottle to drink it in) and just recently started thinking about a reverse osmosis filter system. No one knows but at least I can feel as if I am doing the best I can to help my body help itself.

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You might find this article regarding studies into the benefits of alkaline water of interest: medicalnewstoday.com/articl...

Biologically, because our bodies need to critically maintain the appropriate pH (acid/alkaline balance) for our bodies to function, we just excrete acid or alkali to maintain that interior balance...

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Thank you for your information. I am still at the learning stage and it can be overwhelming so when someone points me in one direction, it is very helpful.

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Municipal water supplies should be closely monitoring water quality to ensure it meets the relevant drinking water guidelines. There are legislative limits on contaminants.

Reverse Osmosis is theoretically the most efficient way to remove contaminants, because the filter membrane pore size can be made too small for other than water molecules to pass through (provided the membrane remains intact - they eventually wear out). Problem is that the filtering membrane collects all the contamination, including organic material, which makes them ideal growth environments for bugs. You don't want to be using a water filter where the filtering process fails or where there's a means for water from the unfiltered side to get the filtered side, particularly if you become neutropenic...

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I believe you are not in the US Neil. Municipal water in most states here have fluoride added to the water, without any choice of the people. Using a filter to filter it out is the only way to get it out.

Also, here in the US, in the city of Flint, Michigan, municipal water was tainted with high levels of lead, and the local government knew about it, and did nothing to immediately correct the problem. Not until the story broke.

nbcnews.com/storyline/flint...

People were poisoned for multiple years, so counting on a municipality 100% is perhaps not wise. The thresholds they use are not the kind of water I want to be drinking. Just saying.

** I was going on memory, and stated the wrong city. It was Flint, Michigan, which is about 70 miles away from Detroit, that had the lead water crisis. I have corrected my original post.

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Municipal water suppliers are generally required to publicly report on the quality of water delivered.

Naturally, independent water testing would be preferable, but there's nothing stopping anyone from taking a sample of water for testing to an independent lab or three, particularly for a public health matter. (Edited after your update about the city concerned).

On a related matter, your comment about fluoride being poison can apply to anything - in the right quantities. Fluoride is natural, it works and it doesn't cause cancer or other health problems: theconversation.com/four-my...

The strong general scientific consensus is that the addition of fluoride to municipal water provides significant health benefits - or it wouldn't be permitted to be added to our water.

Neil

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I indicated the wrong city, and have corrected my post to the correct city of Flint, Michigan.

Fluoride added to our water and most fluoride toothpastes is not healthy for our bodies. Toothpastes even have a poison warning on the labels, and instruct the user not to ingest.

Also, where fluoride is added to the water it is without choice. We should be able to decide for ourselves if we want to ingest this substance, but none is given. I don't need any government making health decisions for me. But, it's the case with fluoridated water.

Therefore, all the more important to me to use a water filter that can filter it out.

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In this case 100 year old lead pipes and a change in water supply were to blame: en.m.wikipedia.org/wiki/Fli...

Lead piping hasn't been used in water reticulation for a very long time because of the known risks.

I appreciate your point about having no choice about fluoride in drinking water. However, you can't argue away the point that fluoride naturally occurs in water and it was the observation that populations drinking naturally fluoridated water had significantly better dental health than similar populations drinking water with less fluoride.

This article appears to provide a balanced perspective: medicalnewstoday.com/articl...

Public authorities don't tend to override the freedom of people's choice unless there is very strong evidence supporting intervention.

We are rather off topic regarding CLL related discussion, given the lack of association of fluoride and CLL...

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Sharipisc - Remember that there are many directions, and this is just one. Yes, it can all be overwhelming. Start with your doctor's input. Then, if you feel the need, add a good MD of integrative (complementary) medicine or a good dietician who knows your particular case. We don't live in a one size fits all world!

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Reverse osmosis will remove fluoride, and I considered that one, but I do t have room under my sink for the unit. Our unit is a countertop model and it has dual chambers. One holds a charcoal filter and the other holds the fluoride filter.

Also, it's never too late to improve ones nutrition and care of ones body. When we added daily juicing (drinking it, not making it. We make up a large enough batch to last a few days), and my husband had his next doctor's visit, his enlarged lymph nodes had gone from 4cm down to 2cm, and his huge spleen had reduced in size by 4cm as well. His platelets which had been below normal since diagnosis, were in normal range. So, I know the protocol my husband is following is working and is healing his body.

Adding in juicing really took his health to a new level and his progress toward normal levels of everything. And we didn't start juicing regularly until eight months after his diagnosis, so it's never too late. Our bodies are built to regenerate and heal.

Wishing you well.

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How do you juice? Stupid question I know but I bought a juicer once and it was so terrible I got rid of it. Any suggestions? Can I just put the fruits and veggies in my Ninja and drink that? What kind of filter do you have?

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I have a Jack LaLane juicer I purchased quite a while ago, but never used it. I don't believe it's made anymore. There are a few good juicers on the market. A good one will run you a few hundred dollars, but quality is important. I recommend googling juicer reviews to get an idea of the kind you'd like.

No, putting the fruits and vegetables in a Ninja will give you a smoothie. Healthy, but not the same thing. The juicer leaves behind the pulp, leaving you with the liquid nutrients. We use a recipe designed for blood nourishment, which therefore must include organic beets. I also feel juicing helps to maintain a healthy body weight. It's like a one two punch - in a good way. :)

Our counter top water filter unit is made by Doulton, and I ordered it online. It also was a few hundred dollars with the cartridges. Considering fluoride is one of the most poisonous substances on earth, I feel filtering it out is one of the best things one can do for the health of their body. Oh, brushing with fluoride free toothpaste is also important. You have to remove as many toxic chemicals and substances from your environment and your life as you can.

As far as food goes, there is a saying to follow for good health, and that is -- if man made it, don't eat it. Meaning all processed food, so of course, a plant based diet will not contain man made processed foods.

Eating a plant based diet without processed foods will also save you from processed sugar which is detrimental to our health, industrial oils like canola and GMO soy, msg, processed flours, cereals, soda and sugary drinks, etc. Those foods are basically void of nutrition. We also rarely eat any grains, or white carbohydrates.

I'll get in trouble if I don't mention this is our choice of cancer healing protocol, and each person should decide for themselves. I don't believe non-toxic therapies like over dosing on nutrition (basically eating a plant based diet, and not eating junk), is anything but healing to the body. However, people have been conditioned to believe only pharmaceutical drugs can be used, and nothing else. They can however, work together. Nutrition needs to stop being demonized. It's weird, and I'll never understand it.

Just observe how everything I mention is countered. My husband is getting better, and that's all the proof we need. He won't stop his supplements or vitamins or juicing, or plant based diet. We are sovereign over our own bodies - unless of course you are in a clinical trial. We only get one shot at this life and the body we are in, so we try to treat it, and nourish it the best way we can.

Wishing you well always.

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Thank you for all your information! So happy to hear he is doing so well. Sounds like you are heading in the right direction for sure.

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Hi Christalsky

Good to know that your husband is responding to Imbravuca/Ibrutinib so well, and he seems to be following the usual, established path for this remarkable treatment that is helping so many patients. This is very good news. It must be an enormous relief for you both, and I sincerely hope that his improvement will continue. No doubt this is being assisted by your healthy lifestyle, which is something that we should all strive for and support.

As I am sure you will appreciate, this is an international forum and, as contributors, we have to be very cautious about any suggestion to patients that nutritional supplements can be a substitute for treatment rather than a support. It could lead to serious consequences if patients were to be persuaded to choose supplements over treatment. We also have to be mindful that, unfortunately, many people simply do not have access, because of their location or circumstances, to a healthy diet, supplements, or even clean water.

Best wishes for continued improvement in your husband’s health, and minimal side effects from a vegan fellow juicer!

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I was answering someone's direct questions, and I don't think I ever have suggested someone use nutritional supplements in place of treatment if needed. And honestly, how can you scold me for encouraging someone to eat a healthy diet? A healthy diet is a choice. If you can junk food, you can eat something nutritious and good for you. I don't understand that part of your comment at all.

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I don't know anyone here who doesn't agree that good nutrition is important, as is exercise. I don't see either as demonized. As an international group we have to remember that what is available to people in different countries and cultural differences will change the way that members approach this. One's approach also has to be something that you can stick with - Macrobiotic, Mediterranean, juicing, or just cutting back on processed foods - It has to work for you or you won't stick with it. I would spend every waking hour trying to match what works for you and your husband, and would quickly give it up for something else (I am basically vegan and have made several healthy adjustments to my diet, but I did that way before my diagnosis).

As for Vitamin D and your statement "no one is testing this" - all of my ologists check for my vitamin D and the B vitamins (as I am deficient in D and B12 without supplementation) at least every 6 months and we make adjustments to my supplements based on those results - hematologists, PC, cardiologist, nephrologist, endocrinologist, gastroenterologist (probably left someone out). I've managed to put together a team that coordinates lab requests - fewer pokes and everyone gets what they want. One does have to consider the source of the supplements, as purity and contamination are both issues, and not everyone has access to reliable sources because of location or economics.

It is not appropriate for any one of us to promote our particular complementary or alternative approaches, though I do think that working with a doctor (MD) if integrative medicine and a good pharmacist can be very helpful for some, especially if planning to supplement , or a good dietician if looking to improve one's diet. There are some dangerous side effects for some with some supplements (some that affect platelets, for example) and/or drug interactions, and there are ways to get the best alleged (only use that word because the results have not been proven to be universally effective through testing) results from some supplements and herbs. These should be discussed with someone who knows both the patient and the supplements well. And as a farmer I agree that we have to be increasingly aware of how our food is treated, but that is a topic for another forum.

We all, ultimately, have to be in charge of our health care, whether it's a matter of which doctors we choose to trust, whether we chose to follow our doctors advice, or what we choose to put into our bodies and surroundings. I'm glad that the combination of Ibrutinib and your chosen lifestyle are working so well for your husband. I hope he continues to do well, as many friends on Ibrutinib have - some who simply wouldn't be here today if some of the newer drugs weren't available.

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How on earth has eating nutritious, fresh food become complementary or alternative approaches? That's just absurd. And perhaps this is what's wrong with health care in general. How can anyone expect to feel better, get better, or stay better, eating a diet void of necessary nutrients? They won't. Period. And if this is considered alternative, I just have no words.

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Thank you for your inspirational post. I am struggling to stay plant based when I feel so unwell. I am taking some time off work I get my focus back on my health. Hopefully that works.

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Hmcardie1

Hope you are having your B12 levels monitored...

vegansociety.com/resources/...

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Right with you on this, I sometimes feel people think I am crazy with the lengths I go to in order to protect my family from toxic chemicals! We do eat meat and cheese but almost all of this is organic too, same for pasta, rice and legumes.

The reason medical advice is lacking is due to the big pharma's funding the medical industry. You can't patent nature therefore the pharma's cant make any money = no interest in what mother nature provides us with. Shocking!

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Oh...and I guess I forgot, I already have cancer!...lol! (Obviously more reasons to be careful, but thought I was already being careful before??.... :-)!

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To a certain degree I feel that this discussion has been skewed by a suggestion that supplement use and good nutritional practices are positioned to be the alternative to the available medical treatments. I, on the other hand, feel that participants who have shared their dietary healthy approaches said nothing of the kind.

At the same time, I am convinced that proper supplement use (and yes, it needs to be diligently researched), plant based organic cooking, exercise, detoxification play a significant role in the support of immune system for the CLL patient.

My husband was diagnosed six years ago. We gradually eliminated sugar, processed food, dairy products from our diet; doubled or tripled on the plant intake; studied the best sources for supplements; got tested for specific vitamin deficiencies.

Even though my husband did not get cured from his CLL this way; even though he had to start a treatment a month ago with ibutrinib, all of his blood measurements with an exception of CLL related ones remained within the normal range.

He has also suffered no side effects and a very minor spike (from 24.9 to 34.5) in while cell count. I strongly believe that a daily regiment of infrared sauna, coffee enigmas, essential oil treatments played a role.

Even though advocating for an exclusively holistic cures can be dangerous and misleading, I feel that it is equally dangerous to dismiss a great support that the so-called alternative (alternative to what? Common sense?) treatments can offer to the general support of health and sustained immunity benefits

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Thank you Rita. You are exactly correct - I have never said to abandon conventional treatment for supplements and dietary changes alone. I hate when my posts get skewed due to close minded thinking, and the assumption that plant based foods are irrelevant to anyone's good health.

Also, if someone did choose to try only holistic methods and refused conventional treatment, that would be that person's prerogative, as we are sovereign over our own bodies. Until we are all turned into drones that is. LOL.

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Hi Neil , I happen to live close to a juice bar. All organic cold pressed and have been drinking about half a pint a day . Should I worry this might do me more harm than good ? I stopped all supplements when I got my diagnosis . The only other thing I use daily is Kefir. I make my own and it helps my digestive issues. I am waiting on results of MRI and blood tests to see where I am in my CLL journey as I’m only recently diagnosed . It’s an anxious time. Thank you . Emer

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I've not looked into the pros and cons of juicing, but found this Harvard Health article echoed my general concerns: health.harvard.edu/healthy-...

which in particular (with my additional emphasis) are:

"More research is needed to identify the health benefits and safety of juicing.

:

Juicing removes the skin and insoluble fiber of fruits and vegetables. The juice itself has a different nutritive value and may not have the same health benefits as whole fruits and vegetables.

:

Risk of bacterial growthUnpasteurized juices can have harmful bacteria that cause serious infections.

The Bottom Line

No published research currently supports the safety or efficacy of juice cleanses or fasts. Some types of juices are associated with health benefits, but more research is needed to determine cause-and-effect.

The literature says that drinking vegetable juice is a healthy way to increase your intake of vegetables. However, it should not replace fresh, whole vegetables in the diet. Whole fruits and vegetables have a higher nutritive value and can help the body to naturally detoxify itself.

Not quite filling up half of your plate with fruits and vegetables and considering juicing? Ask a registered dietitian if this diet change is safe for you. Supplementing your diet with fruit and vegetable juices may help to fill in the gaps for a healthier life."

(Time and time again, research shows that for healthy people, supplements don't provide the claimed benefits and we would do better to eat minimally processed natural foods. With CLL, we may benefit from specific supplements, but that should be done after first verifying we have deficiencies that can be addressed by taking supplements. Sometimes we lack the ability to absorb supplements, e.g. B12 and need injections.)

In summary, juicing may provide us with benefits if we find it challenging eating healthy serves of fruit and vegetables. If you find juicing works for you, then I would highly recommend purchasing a juicer and not putting yourself at the risk of inadequate cleansing by the juice bar staff. Juicers are difficult to clean well and any remaining fruit and vegetable material provides a great medium for bacteria to grow in until it contaminates the next juicing. fda.gov/Food/ResourcesForYo... That's less likely to be a problem for healthy people, but since CLL compromises our immune system, particularly if we are neutropenic, we need to take particular care. (For the same reason, soft serve ice cream is a no-no if we are neutropenic.)

Personally, I've successfully worked at increasing my intake of vegetables - I've always enjoyed eating fruit.

Neil

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Thank you Neil, I also eat lots of organic fruit and veg and eat no processed food. Have always eaten healthily. I do have my own juicer which I shall take out of the cupboard and put back into use ...I got lazy about doing it myself when the lovely neighbourhood juice bar opened ! Don’t believe in juice fasts or cleanses myself . Everything in moderation. Kind regards . Emer

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This is exactly what I was loooking for!!!

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