Complementary Symptom Management for Cystic Fibrosis
By Tatjana Djakovic M.Sc
Co-authors Paul Quinton PhD, David M. Orenstein M.D., John Mark M.D., Leonid Ber M.D.
“This book produced by the Natural Health Research Institute (NHRI) and Tracie Lawlor Trust for cystic fibrosis (TLT4CF) on complementary symptom management for Cystic Fibrosis (CF) is meant to bring together some of the most widely used complementary treatments for CF and establishes a solid evidence base for the expanding role of alternative approaches within the integrative medical field. The vast and varying complementary and integrative health field categories can make it daunting for a healthcare professional to have adequate ease to access evidence based integrative medicine easily. This booklet summaries the evidence into a systems approach addressing the most commonly affected organs in those with CF and provides some complementary management options which may be effective. The booklet also ventures into CF related diabetes occurring more often and becoming a significant burden within the CF community. Mental health problems, which often occur in those with debilitating disease, are also discussed in relation to those with CF. The booklet also notes where there is a lack of evidence in certain areas and is keen to acknowledge this fact while providing a clear and concise evidence based approach to the reader.
Also includes a upper safety limit table on all discussed herein.”
Where to buy worldwide on kindle please follow the link listed and add to cart
Price €30 for the book, postage within Ireland €3 rest of the world €5.50 as it currently stands.
We cannot post or sell to the USA as NHRI sell the book there.
For a paperback make a donation through “Just Giving” here
€33 donation for postage within Ireland.
€35.50 donation for postage to rest of the world (excluding USA)
Include your name and be sure NOT to click “hide donation amount”.
Screenshot your donation, then mail us on our Facebook “Tracie Lawlor Trust for Cystic Fibrosis” or send an email to info (((AT)) tracielawlortrust.com please remove brackets and use the symbol for “at” before emailing.
Include a screenshot of your donation, name and your mailing address.
As all the tools we use don’t cost us and we are all volunteers this is why it is slightly awkward but saves on admin!! So again donations received go back into C.F. assistance, awareness and CAM research.
Ava Li was diagnosed in 2008, a week before I turned 40. She was our first and only child and although the news broke our hearts at the time, there was some element of relief to know that we had been correct all along in feeling that something was awry. Because there was no new born screening in Ireland then (it has since been introduced); she was 14 months old at her diagnosis. In those 14 months we had been in A&E twice; she had been on several courses of antibiotics and once we had been sent home by a ‘relief’ doctor with a pat on the head and told to buy a honey and lemon mixture to ease her cough.
I had always been a firm believer in alternative remedies and whilst I was content to give the first couple of antibiotics I got increasingly upset when I saw they were not working and I felt they were potentially damaging her young immune system.I recall introducing Vitamins C and D and probiotics and noting a marked improvement in her health during that time. However, when the diagnosis came, I was shocked into doing everything the doctors said and because I knew very little about cystic fibrosis in the early days, I looked to them entirely for guidance and answers.
However, in the following 16 months, I felt increasingly powerless and depressed; Ava Li was hospitalised twice with a total of three different sets of IVs and she was prescribed a further ten courses of heavy strength antibiotics for infections of varying grades. Breaking point for me was the tenth antibiotic course which was for – as I discovered midway through the course – a scanty growth of staph aureus. At that point I realised I could not continue on the path we were on. I felt that her immune system had to be capable of and allowed to fight some battles itself, and I realised I could not put her health entirely into the hands of prescribed antibiotics.I had read, researched and cross examined all information relating to cf I could get my hands on. I realised that I had to regain control of my child’s health and steer a different course for our family. I would gratefully accept modern medicine at appropriate times, whilst utilising the generations of natural medicine, therapies and knowledge that had always been my basic instinct.
From the moment I made that conscious decision our lives changed for the better. I felt empowered and alive again. I reintroduced various vitamins, minerals and supplements that I would have used previously, I researched dosage, I googled cf with the words ‘good news’ attached, instead of ‘life expectancy’ or ‘severe mutations.’ I made contact with scientists who ha
d done research on various promising therapies e.g. silver and glutathione. I worked intuitively again and believed in my ability to make a positive difference.
Following these initial changes, Ava Li remained off antibiotics for 10 months until evidence of infection showed up on a chest x-ray. She was then antibiotic free for a further 23 months until a scanty growth of pseudomonas and, is currently 11 months hale and healthy. I usually dislike discussing or comparing periods without antibiotics as I understand everybody is different and nothing is certain or guaranteed – everything can change.I use it here purely to display what I firmly believe was the difference my approach and attitude had on our daughter’s health and outlook.
The specific changes I made at that time are as follows:
Diet: I began daily juicing organic fruit and vegetables, included daily portions of raw, unprocessed food, kept sugar intake to a minimum and removed most dairy (we still do limited amounts and try to veer towards goat dairy whenever possible).
Supplements: we added daily Vit C, D, selenium, probiotics and glutathione.
Exercise: We make a huge effort to incorporate elements of fun exercise. Currently Ava Li has running, swimming, dance and dog walking incorporated into her week!
Attitude: This is arguably the most vital element of all for me. I believe we are truly lucky and have an immense debt of gratitude. I also believe that we have control over our bodies, minds and health. It is not that I think we will not suffer or become ill at times. Rather, it is a belief that we have more ability to deal with those challenges that we often give ourselves credit for, and that our physical, emotional and spiritual bodies have an immense healing capacity which we need to nurture and develop.
Of course I still have times of worry, doubt and anxiety, but I attempt to recognise those times as a human condition rather than weaknesses!I gratefully recognise western medicine and the benefits and advances it brings to our world. However, I also feel that western medicine owes much of its foundations and many future endeavours to nature, yet it often displays little respect or awareness of this and is too often solely profit driven. In Karmic terms alone this can’t continue; it is not possible to continually take from one source and repay with disrespect and self-serving greed. It is therefore unthinkable for me to allow my daughter’s future to be entirely in the hands of western medicine.
I truly believe that as a global community we need to begin to see the natural healing and life giving properties of our universe, and ourselves, and gratefully recognise the benefits that a holistic approach to health and living brings.
I believe that by raising our daughter with a healthy awareness, empathy and respect towards all living things, she will be well armed to rise to whatever challenges she may meet along her path.
I see her as a strong and healthy child. I make a conscious effort to believe in the power of myself; so that she can believe in the power of herself.
This story was kindly re-published with the consent of our Uk friends at http://dearcf.com/. Louise Byrne has authored two books specifically for children with Cystic Fibrosis, in particluar she has received notable media attention from her book “Can you see what I see?”, which she decidated to her mother, a book that no doubt encapulates Louise’s own ‘Zen’ positive philosophy. Read more on her book here! The information contained herein is for information purposes only and is not to be taken as medical advice. Always consult your doctor or healthcare professional before making any changes to your medical regime. Notice Disclaimer
So my life began much like anybody else on Aug 5th 1980. I am the youngest of 4 siblings. My parent had me vaccinated at 6 months old for measles, mumps & rubella. Everything changed from that point on. I became ill, very ill. Hospitalised for 3 months, they diagnosed me with Cystic Fibrosis. Doctors said I would not make it through the night, then Sr Carmel blessed me with Holy water from Lourdes. I was Baptised, Confirmed & given the last rights all at once by Fr Doherty. Enter the first miracle of my life!! Over night I was sitting up & smiling for the first time since becoming sick. the doctors told my parent to go place bet’s at the races because they had never seen anything like this before!
From this time on was the usual routine of colds & flu, medications & hospital admissions most children with CF have to endure. I was not a mild case. Until the age of three, when my mother finally thought to herself, ‘there has to be a better way??’. Then her journey of research started. She learnt the impact of diet and how much of a difference it can make. She looked at the hospital CF diet which consisted of high sugar, bad fats, bad salt, processed foods, lollies, lots of dairy all in the name of calories. Which was meant to equate to weight gain. However she noticed the more patients at these foods, the more enzymes they needed, the more sick they became. She decided to take another course and put me on a modified macrobiotic diet. When I say modified I was allowed a limited amount of chicken, rye bread, yogurt, carrot and apple juice, these are not things that are usually allowed in macrobiotic protocol, but given I have CF (and not Japanese!), it needed to be adjusted.
Guess what? It worked!! From the age of 3 to 15 I was hospital free!! I lived a very normal life & had a happy childhood. I didn’t even hear the words ‘Cystic Fibrosis’ until I was a teen! For this childhood I am forever grateful (I just thought my mum was full on about diet! haha!).
Integrative medicines played a major role in keeping me out of hospital, normal weight, on minimal enzymes, normal appetite and cough free. I think I must have consulted with every integrative doctor in Adelaide, but some of the things that really made a difference growing up are as follows (I hope I haven’t missed anything!): Vitamin C – oral & IV’s Garlic – Oil caps, Kyolic Garlic liquid & cooked in every main meal! Zinc – immune booster & responsible for many digestive enzymes Vitamin A – In very high doses to thin mucus & help mucus membranes Vitamin E – Protects lungs from oxidative damage Vit D – helps calcium absorption & assists with maintaining good lung function Selenium – maintain elasticity of the lungs Cod liver oil – essential fatty acids (I have since replaced with flax oil which helps the respiratory enzymes function) Probiotics – maintained healthy digestion & strong immunity B Vitamins – for energy & appetite Herbs Juices!!!!
*Note all the supplements I took and Take are all natural, never synthetic
Another important factor that kept me well was keeping active. I never did formal physio (percussion, pep, nebulizers etc. until the age of 15). I had no chronic cough because I was always active and on a diet that was made to reduce and move mucus, this is how I kept my lungs clear. I was always outside, like Forrest Gump… ‘I was running’! Ocean swimming tennis netball soft ball walking my dog table tennis gardening trampolining golf sailing bike riding running badminton trail riding (horse riding) bush walking I was not allowed to watch TV much at all, so this was a good way to get me thinking outside the box! (pardon the pun!)
Unfortunately when I was 16 things took an abrupt turn for the worse. A combination of a family crisis/stress and I caught a killer virus (it was an really bad flu season that year) it hit me HARD. I ended up with pneumonia, in intensive care. I flat lined, I remember feeling my body floating above me and I was thinking, praying ‘no no no no no, please God I don’t want to die now’, suddenly a surge of energy came back into me and the heart monitor started beeping again… second miracle! As a result of this bought I was told that I should be listed for a double lung, heart and liver transplant.
Say what?! NO!!!! It was all they could offer me at that point, so in my mind I had one of two choices, ‘roll the dice’ so to speak and go to an integrative hospital in Mexico or have these transplants?… hmmmm. Nothing could be scarier at that age tan to make this choice. But I said to my parents I would rather die trying than go through the transplants.
Hospitals sacred me. I looked around at what they had to offer, the life they offered. I saw the ultimate end. It was not for me, I didn’t want to live that way (particularly since I had experienced a life without hospitals, I wasn’t prepared to give that up so easily) I am a long term thinker!! I also was not prepared to give up on the dream of having my own family some day, this and the love of my parents, were the motivation behind all the effort I put in over the next five years.
In this five year period I went to Mexico four times, Brazil twice and through Europe once, on physical and spiritual journeys to heal my body and Soul. To the do the Gerson therapy hospital I went four times. This therapy single handedly saved my life at the time, and my organs! But it was tough, certainly not for everyone. I did it full time, sacrificed my life to it. Much like an athlete, I dedicated all my time into getting better. During this period I also kick a four year, drug resistant infection I caught in hospital; MRSA and Aspergillus at Dr Bradford’s hospital in mexico.
In 2004 I was married to the man of my dreams, we have had four sons together; Charles 8, Marcel 6, Gabriel 4 and Sebastian 2. All natural conceptions, full term, natural births (Sebastian was even breech! and yes, I caved and had an epidural with him which was THE best birth choice I ever made! haha! The other births were full on! No pain relief at all.. Never again!). Our boys are all happy and healthy, no CF.
For me, I have no regrets, only gratitude and hope, for the life I have and still lead using integrative and nutritional therapies as the foundation to my well being. It’s freed me mentally, emotionally and physically from the fears that CF can cause. Of course I have bad days, CF is a challenge. I still need medications now too, Kalydeco has brought a relief like nothing else, but fundamentally, you cannot stay well long term if you only rely on drugs and bad diets. Somethings gotta give! It’s all about balance and hopefully it is more heavy on the natural side than the artificial side.. because after all, we are natural beings CF or not! I wish you the very best of health to you! Never give up!! xo
Faye, a 32 year old mother blogs regular columns on her site http://cfmudda.blogspot.ie/ where she shares her journey and experience using integrative medicine, it is a massive resource full of life and insite from a highly experienced Cystic Fibrosis patient, we at the TLT4CF are very grateful to Faye for sharing her journey with us and allowing publication. Please note always consult your doctor or healthcare professional before making any changes to your medical regime, for information purposes only see disclaimer
Ever find yourself in the produce section at the supermarket staring down two colorful apples wondering which one is worthy of making its way into your grocery cart? Both apples look the same but one has that familiar USDA Organic sticker plastered on it. One things for sure they definitely aren’t priced the same.
With an average cost of 10%-40% higher are organic foods worth it? Do they have more nutritional value? And does this make a difference to your overall health? I invite you to read further as I help you get to the bottom of all this organic talk so that you can make the decision that feels the best for you.
What Deems a Food To Be Organic?
The U.S. government establishes strict standards to be met for farmers before they can use the USDA Organic seal on their food products. A product can use the USDA Organic seal if it contains at least 95% organically produced ingredients.
The following chart shows the differences between organic vs. conventionally farmed food:
organic vs. conventional
Does Organic Food Contain More Nutritional Value?
This question has created a lot of controversy over the past few decades as organic food has become increasingly more popular. More and more studies have been conducted in recent years factoring in things like farming methods, climate variability, food formulations, and harvest rates among other things to assess the nutritional content of our food in terms of its vitamin, mineral, phytochemical, antioxidant, and toxin load. Here’s a few of the findings below.
● A study looking at organic and conventionally grown pears and peaches found that the organic fruits had an improved antioxidant defense system (higher levels of polyphenols, PPO, vitamin C, & vitamin E) in comparison with their conventionally grown counterparts . Another study found that organically grown strawberries have more antioxidant activity and anti-cancer effects than conventionally grown strawberries . Scientists suggest that this data shows that organically grown food is in effect “beefing up” its own defense mechanisms to protect itself in the absence of pesticides.
● A review in 2006 showed that organic foods had significantly higher amounts of antioxidants (vitamin C, polyphenols, & flavanoids) and minerals in addition to lower levels of pesticide residues, nitrates, and some heavy metal contaminations than conventionally grown crops. They concluded that because of this organic crops had a higher nutritional value and a lower risk of causing disease due to contamination .
● A number of studies have shown that organically grown food contains more dry matter (less water) than conventionally grown fruits and vegetables [5,6]. An increase in dry matter means that there are more nutrients per unit weight of food.
● One study looked at the nutrient content of eggplants cultivated over two successive years by both conventional and organic methods. The study found that the organic crop was higher in potassium, calcium, magnesium, copper, and phytochemicals called phenolics .
● Whole wheat production was studied over a 3 year period comparing organic and conventional crops. The study found that there was no difference in concentrations of the phytochemicals (carotenoids & phenolic acids) between the two groups. Instead, improved climate factors produced a 55% increase in phytochemical composition in year to year production .
The best overall review to date of the nutritional value of organic vs. conventionally grown crops was published by The Organic Center in March of 2008. In this review they assessed the results of 97 peer-reviewed studies published over a 27 year period comparing the nutrient levels in organic and conventionally grown foods . To determine the nutrient quality of the food they focused on 11 different nutrients using matched pairs which is defined as “crops grown on nearby farms, on the same type of soil, with the same irrigation systems and harvest timing, and grown from the same plant variety”.
What they found was that organically grown crops had a 25% overall higher nutrient content than conventional crops. A little over 60% of the organic crops had higher levels of a disease fighting flavonol named Quercetin. Vitamin C was found in higher concentrations in approximately 50% of the organic crops compared to conventional crops. And to top it off they also found that 80% of the organic crop samples had a higher total antioxidant capacity than conventional crops!
The organic world is not without its critics though. An article titled “Nutritional quality of organic foods: A systemic review” published in 2009 in The American Journal of Clinical Nutrition claims that there was no evidence suggesting organically grown foods were nutritionally superior to conventionally grown foods. Come to find out this article originated as a report commissioned by the Foods Standards Agency (FSA) out of the UK. According to Paula Crossfield (co-founder and managing editor of civileats.com) the report was heavily biased and heavily tied to special interests of agribusiness, the dairy industry, Sarah Lee Corporation, and one of UK’s biggest grocery chains. You can read Paula’s full review here about the misleadings in this article.
Does Organic Food Significantly Improve Your Overall Health?
It is clear from the scientific literature to date that organic food is certainly more nutritious and less toxic than conventional food but does this equate to better overall health and a lower risk of chronic diseases? You might be surprised by the answer to this as you’ll soon find out.
Much of the published data on pesticide exposure and disease does show an increased risk in some cases. The biggest fear of many people is cancer. The National Cancer Institute states that “studies of people with high exposure to pesticides, such as farmers, pesticide applicators, manufacturers, and crop dusters, have found high rates of blood and lymphatic system cancers; cancers of the lip, stomach, lung, brain, and prostate; as well as melanoma and other skin cancers”. Another study performed a meta-analysis on 40 case-controlled studies and found that exposure to pesticides for greater than 10-20 years was associated with a higher risk of Parkinson’s disease but several other risk factors such as rural living, well-water consumption, and farming played a part as well . Another study showed an increased risk of Alzheimer’s disease in occupational workers exposed to pesticides .
So while there is a link to pesticide exposure and disease it appears that the highest risk is in those who have the greatest exposure (farmers, workers, etc.) and only after being exposed to high amounts over long periods of time. The amount of pesticide residue left on the food you buy is much lower than what these studies elude to.
An even more important aspect of this topic in regards to pesticide exposure and your overall health is what you can do to prevent the risk of disease from occurring. A large body of evidence points to the fact that consuming a nutrient dense, plant-based diet and avoiding processed and animal-based foods reduces your risk not only of cancer due to pesticide exposure but also many other chronic diseases (heart disease, diabetes, dementia, etc.).
The CDC actually reported in 2009 that the primary source of exposure to organochlorine pesticides was from fatty foods such as dairy products and fish . So just by avoiding fatty animal-based foods you are already decreasing your exposure to pesticides.
The most influential evidence to date concerning diets relation to cancer has been conducted by Dr. T Colin Campbell who has spent over 40 years in nutritional research. Dr. Campbell conducted several studies on a known potent carcinogen called aflatoxin. In animal studies he was able to show that the cancer causing effects of aflatoxin could be “turned on” and “turned off” simply by how much protein was consumed. When more than 10% of the total calories were consumed as casein (animal based protein found in dairy) then cancer growth was ignited and tumors began to form . He then conducted a similar experiment testing both animal protein (casein) and plant proteins (wheat and soy). This time he fed 3 different groups of lab animals a 20% protein diet (far exceeding the 10% needed to cause cancer growth) that consisted of either casein, wheat, or soy protein. Remarkably, the 20% wheat and soy groups had no signs of cancer growth while the 20% casein group all developed cancer .
Dr. Campbell’s work is further validated by Dr. Joel Fuhrman’s review of the scientific data on the benefits of eating a plant-based diet to reduce your risk of cancer as seen in the video below.
Organic foods have clearly been shown in a large body of scientific studies to have a higher nutritional value than their conventionally grown counterparts. However, even though eating non-organic foods increases your exposure to pesticides it doesn’t mean that you’re on the fast track to develop cancer and other debilitating diseases. What is more important is that you eat a diet that contains large amounts of nutrient dense, health promoting foods such as fruits & vegetables as well as legumes, whole grains, & nuts/seeds. By doing this you are arming yourself with an excellent defense mechanism against so many of the chronic diseases that we’re experiencing today in our society. You’re best bet is to eat a diet that consists 100% of these foods with the highest emphasis on fruits and vegetables. You can learn more about how to do this by visiting my website.
I’d also like to mention an excellent resource from the Environmental Working Group which publishes a list of foods from best to worst in relation to their pesticide exposure. I think you’ll find their list very helpful if you’re wondering which foods have higher amounts of pesticides compared to others.
In the end, I would say that if you can buy organically grown food products and they are readily available at a price that you can afford then you should absolutely do it. But more importantly, you should eat a nutrient dense, plant-based diet and stay away from processed and animal-based foods regardless of their organic or inorganic nature if you want to do what’s best for your overall health.
Now I’d love to hear from you…
Do you buy organic?
If so, what are the reasons for doing so?
Do you have any other resourceful information for your fellow readers on this topic?
1 Winter, C. K. and Davis, S. F. (2006), Organic Foods. Journal of Food Science, 71: R117-R124. doi: 10.1111/j.1750-3841.2006.00196.x
2 Carbonaro M, Mattera M, Nicoli S, et al. Modulation of antioxidant compounds in organic vs conventional fruit (peach, Prunus persica L., and pear, Pyrus communis L.). J Agric Food Chem. 2002 Sep 11;50(19):5458-62.
3 Olsson ME et al. Antioxidant levels and inhibition of cancer cell proliferation in vitro by extracts from organically and conventionally cultivated strawberries. J Agric Food Chem. 2006 Feb 22;54(4):1248-55.
4 Györéné KG, Varga A, Lugasi A. A comparison of chemical composition and nutritional value of organically and conventionally grown plant derived foods. Orv Hetil. 2006 Oct 29;147(43):2081-90.
5 K Woese, D Lange, C Boess, KW Bogl, A comparison of organically and conventionally grown foods: results of a
review of the relevant literature, Journal of Science, Food and Agriculture, 74, 281-293, 1997.
6 V Basker, Comparison of taste quality between organically and conventionally grown fruit and vegetables, American
Journal of Alternative Agriculture, 7, 129-135, 1992.
7 Raigón MD, Rodríguez-Burruezo A, Prohens J. Effects of organic and conventional cultivation methods on composition of eggplant fruits. J Agric Food Chem. 2010 Jun 9;58(11):6833-40.
8 Stracke BA, Eitel J, Watzl B, Mäder P, Rüfer CE. Influence of the production method on phytochemical concentrations in whole wheat (Triticum aestivum L.): a comparative study. J Agric Food Chem. 2009 Nov 11;57(21):10116-21.
9 Benbrook C, Zhao X, Yáñez J, Davies N, Andrews P. State of Science Review: Nutritional Superiority of Organic Foods. 2008 March. Available: http://www.organic-center.org/reportfiles/5367_Nutrient_Content_SSR_FINAL_V2.pdf. Accessed 7 Jan 2011.
10 Brown TP et al. Pesticides and Parkinson’s Disease-Is There a Link? Environ Health Perspect 114:156-164 (2006).
11 United States Center for Disease Control Fourth National Report on Human Exposure to Environmental Chemicals: Organochlorine Pesticides.
12 Dunaif GE, Campbell TC. Dietary protein level and aflatoxin B1-induced preneoplastic hepatic lesions in the rat. J Nutr. 117 (1987): 1298-1302.
13 Schulsinger DA, Root MM, Campbell TC. Effect of dietary protein quality on development of aflatoxin B1-induced hepatic preneoplastic lesions. J Natl Cancer Inst 81 (1989): 1241-1245.
14 Hayden KM, Norton MC, Darcey D. Occupational exposure to pesticides increases the risk of incident AD. Neurology.2010 May 11;74(19):1524-30.