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.”
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Up to 59% of patients with Cystic Fibrosis (CF) experience
significant pain and discomfort that may decrease their quality of life. The research we are conducting at Stanford University School of Medicine and Lucile Packard Children’s Hospital Stanford, generously funded by the Tracie Lawlor Trust for CF, is investigating whether acupuncture can help teens and young adults with CF improve their pain and sleep. Our overall goal is to determine if acupuncture is a safe, feasible and effective integrative medicine approach that may improve CF patients’ pain and quality of life.
We, Dr. Brenda Golianu, an anesthesiologist, and Dr. Ann Ming Yeh, a gastroenterologist, are leading this pilot study, with a larger cross-disciplinary team. We are both physicians and certified medical acupuncturists, and have completed fellowships in Integrative Medicine at the University of Arizona. Medical acupuncture has been used for many years to help alleviate chronic pain in various parts of the body. However, few studies have been conducted to examine the efficacy of medical acupuncture in reducing the pain or other symptoms of discomfort experienced by teens and young adults with CF.
We are investigating whether a regimen of one medical acupuncture treatment per week for four weeks could be effective in improving young CF patients’ pain, sleep, and quality of life. Using a randomized placebo-controlled crossover study design, study participants were assigned to initially receive either traditional medical acupuncture or sham (pretend) acupuncture. After the first cycle of true or sham treatment, the patients had a 2-week waiting period. Then those who had received sham acupuncture received true acupuncture, and those who had received true acupuncture received sham acupuncture. Thus, all participants had a chance to benefit from the therapeutic approach.
To help us determine acupuncture’s efficacy in improving CF patients’ pain, we measured each participant’s pain before and after each treatment and on each day of the study between treatments. We also measured participants’ sleep duration and sleep quality. To more broadly evaluate important quality of life measures, such as fatigue and energy level, we used the Cystic Fibrosis Quality of Life Questionnaire. We are now in the data analysis phase and anticipate our pilot study’s completion at the end of summer. We greatly appreciate the support of the Tracie Lawlor Trust for CF and its many wonderful supporters and hope our work will contribute to the well-being of young people with CF.
*The opinion(s) expressed herein are the sole opinion of the author are not necessarily the opinion(s) of the Tracie Lawlor Trust. Always consult your physician and healthcare team before making any changes to your medical regime. For information purposes only not to be considered medical advice. Please see Disclaimer
– See more at: http://www.tracielawlortrust.com/category/complementary-intergrated-medicine/#sthash.lRiauVIk.dpuf
*Sam’s journey toward CF complementary and integrative medicine is told here in her own words, be sure to check out her blog for more updates and news http://dutchmagicfactory.blogspot.ie/ We at the TLT4CF are grateful for Sam for letting us share her story to inspire other parents to empower themselves with knowledge and work together and you never know…. 🙂
How it all began
J was born through a C-section and was fed formula from birth as I was unable to breast feed due to complications and a large amount of antibiotics I was receiving. During this period J was progressing fine weighing about 8 kg and then at 6 months we changed formula and almost immediately he began to lose weight, began getting regular colds and general running nose, along with diarrhoea, his doctors prescribed him asthma medication and allergy meds but still his weight was not maintained.
After about the year mark finally he reached his original 8kg again. I switched to Soy Formula and he gained 2 kilos within the month, I noted his airways started to clear, his runny nose decreased and amazingly we were able to stop all asthma and allergy meds. I personally had suspected a food allergy to the other cow’s milk based formula and I began to cautiously add regular foods. The less soy he was getting the more we began to notice strange smelly diapers or oily stools with orange spots and they just looked very strange, nothing I’d ever seen before. Of course I immediately searched the net and consistently came across Cystic Fibrosis which began to ring alarm bells so I brought J to visit our paediatrician where a blood sample was taken for CF mutations and a stool sample test was done for Giardia infection (an infection known to cause malabsorption).
The Giardia tests came back positive and I was for the moment relieved, in a way to hear it wasn’t CF and just treatable infection. After some time visiting J’s doctor for a check-up to see if the Giardia infection had cleared, the test results were back on the CF mutations. Only one mutation had shown in the test (delF508) and I was told if no clinical symptoms of CF were present, then further testing was not needed. At that moment I was somewhat relieved but also confused could he still have CF? At the time my knowledge of CF was sparse and I began (again) to search on the internet to find out all I could. I found common symptoms J had such as salty skin and sweat crystals in his side burns after all the heat as we lived in Aruba at the time. It appeared to be sand but on further inspection they were actually salt crystals. The paediatrician thought it not necessary to do further testing, but I still had a mother’s instinct that something just wasn’t right and I needed to be sure, so we made an appointment in Miami Children’s Hospital for further testing, where we then learned that J had CF… He was two years old at the time.
We were in shock and devastated and like all parents. I went through a range of emotions: fear, anger, despair but quickly I decided the best route was to learn all I could about this disease and try as to the best of my ability to keep my son as happy and healthy as possible until some kind of medication would become available.
I took in information on his genetics learning he had a “gating” mutation of S1251N and another common mutation delF508. I made a conscious decision to keep an open mind to all possibilities, to learn and garner all the knowledge I could and maybe I could put something together, after all knowledge is power but an open mind to this knowledge is even more powerful!
I began to rack my brains on what had helped J over the years so far to keep him well or improve him when he had gone through a bad patch, one notable thing was the soy formula (Nutrilon brand). So I began to investigate further, what was in there that could help so much? What made him so healthy and gain weight within that month we switched? Then I read about Genistein and CF and it was almost one of my eureka moments where in my mind it was clear this must have had an effect and I began to give him Genistein, in the form of a food supplement.
Further hours of research I came across Curcumin for CF and taking the safety profile of any supplement I gave J into consideration, I added this to his regime. We mixed Curcumin and Genistein everyday with applesauce and added his enzymes, which he was not a huge fan of the taste but he took it for us.
In 2012 the Curcumin the manufacturer changed the packaging of the brand of Curcumin we always bought and I accidentally and unknowingly ordered the wrong Curcumin which contained no piperine (a black pepper extract added to enhance absorption, thereby making Curcumin more bio-available). Within a day or two J’s stools were very bad and we had no idea why. We racked our brains and went through everything from his food, enzymes to the timing of his enzymes and even increasing them but nothing we tried worked over the next few weeks, until one day we gave a second capsule of Curcumin and the stools improved within the day. At the time we were certain Curcumin was doing wonderful things for him. It wasn’t until three months later (I know for all my observational skills this one slipped!), I was facing the packaging and while eating a bowl of cereal I decided to read the packaging (as you do) and I suddenly noted that the capsules we had been using had no piperine with the Curcumin!
Almost immediately when he was back on the Curcumin with piperine things improved tremendously and we were more reassured that this combo was doing something for him. We noted something new happening which was a “wet cough” which we thought had to get treated with antibiotics and it made us wonder if for the period he didn’t have piperine with Curcumin did this leave him susceptible to infection? Or it may just have being coincidence but over time and through my blog I’ve learned from others taking and giving the combo of Curcumin and Genistein that they too reported a typical “wet cough” with every typical dose increase, which may be caused by better hydration of the lungs and perhaps a balance of the CFTR within the lung? Thankfully it also subsides within a few days or weeks depending on the amount of increase or the amount of “old mucous” the particular CF patient has to clear from their lungs. To my amazement and strangely the only journal I have a subscription to published an article of the synergistic potentiating effect of the combo by TC Hwang, which again reaffirmed my belief that this was the way forward. Of course this was in G551D mutation not the S1251N that J has but by that time, I’d done enough research to understand that the S1251N defect is similar to G551D and likely the combo would work well for S1251N mutation also.
We have noticed that dissolving Curcumin in hot (soy) milk improves absorption. We microwave about 30ml to boiling point, take it out of the microwave, open one Curcumin capsule, poor it into the milk. Stir, strain a few times, and stir some more until all is dissolved, than mix it into 200ml of chocolate milk (hot or cold). If a seven year old drinks it without complaints, it must be palatable for most everyone. Another idea might be dissolving Curcumin in a cup of hot soup. But this pre-dissolving is not necessary. Just taking a little more Curcumin would give you the same added effect.
Results –!!! —!!!
Finally the results so far are amazing!!
The latest sweat test came back at 59mmol/L!! We’re below the magic 60!
How the sweat test is used for diagnosis of CF:
Less than 40 = no CF
Between 40 and 60 = inconclusive
More than 60 = CF
Our sweat test history:
At diagnosis in Nov 2008: 118mmol/L (no Curcumin or Genistein)
May 2013: 90mmol/L (1000 mg Curcumin and 50 mg Genistein)
Feb 2014: 59mmol/L (3600 mg Curcumin and 150 mg Genistein)
Some might think a drop in sweat chloride levels could be a coincidence or something that can happen spontaneously. It doesn’t. I did not pay attention in Statistics class on how to calculate the chance that this is a coincidence, but if I’d had to guess it would be p=0.000andalotmorezeros1. This doesn’t just ‘happen’ in CF. Below are some graphs from scientific research articles on the new medication (Kalydeco/VX770)) for CF that corrects the underlying defect. You’ll see that the drop in sweat chloride we have found (minus 59mmol/L) is even greater than what is seen on 150mg of Kalydeco. (Please note that the drop from 118 to 59, is coincidentally the same as the absolute result of the sweat test, which is also 59)
All in all, it’s completely experimental. Yes, there is scientific evidence it works in a laboratory setting (‘in vitro’) and on living human cells (‘ex vivo’), but we absolutely don’t know what happens in the CF body (‘in vivo’) after taking this combination of supplements. There is nothing I can say about safety, except for my son taking no more than the daily recommended dose of both supplements (adjusted for his weight) for the last 5 years and noticing no ill effects. Only recently, after discovering the fact that Curcumin and Genistein can really can correct the underlying defect in CFTR function, we have gone up to a much higher dose, while keeping a close eye on J for any side effects.
What else do we do?
Of course we don’t solely rely on a single thing to keep J healthy we also do multiple other things such as a no shoe policy in the house and a laughing policy!! Big belly laughs as much and as often as we can!
We don’t do physical therapy or airway clearance we prefer to do lots of exercise as a family and have a trampoline outside, along with many other toys which we all play with, all of which involve active participation and when it’s cold out we have the X-box kinect for indoor exercise with lots of encouragement and activity that involve movement and breaking a sweat! We also had a mattress upstairs in J’s bedroom we would all jump around and dance like a mad house to music for hours but once we noticed the ceiling below the room cracking we thought we better all stop jumping in the same spot, just in case! All in all we believe our healthy lifestyle and eating habits play another large role in keeping J healthy and of course the whole family. In a sense we all learned and benefit from the disease in a way…
The most fantastic news has just come in! We have received funding for a clinical trial with Curcumin and Genistein for S125N patients in Holland! I am proud to be able to tell you that as ‘the spiritual mother’ of this supplement combination (that’s what they called me…), I have been invited to become a member of the Patients’ Advisory Board of the trial alongside a number of the specialists (adult and paediatric) and a representative of the Dutch CF Foundation. Of course this story is ‘to be continued’ when the results are in! Fingers crossed it will show the same efficacy for other patients as it done for J!
If anyone has tried, or is going to try these supplements, I would love to hear from you! Please send me an e-mail at firstname.lastname@example.org
*The opinion(s) expressed herein are the sole opinion of the author are not necessarily the opinion(s) of the Tracie Lawlor Trust. Always consult your physician and healthcare team before making any changes to your medical regime. For information purposes only not to be considered medical advice. Please see disclaimer
By Sara Leiman post graduate student at Harvard University, USA
Pseudomonas aeruginosa infections are the leading cause of mortality for cystic fibrosis (CF) patients . Work over the past decade has demonstrated that the danger of P. aeruginosa infections rests not only in this bacterium’s genetic resistance to many antibiotics, but also in its propensity to live in a biofilm. P. aeruginosa biofilms comprise a mixture of metabolically active and dormant cells encased by a self-produced exopolymer matrix. The biofilm matrix has a drastic therapeutic consequence, magnifying the minimum inhibitory concentrations of antibiotics as much as 1000-fold when compared with free-living P. aeruginosa. Improved strategies to treat and clear chronic P. aeruginosa infections must therefore overcome this protective exopolymeric barrier. Importantly, while many factors contributing to P. aeruginosa have been identified – including quorum sensing molecules, the secondary messenger cyclic-di-GMP, and genes responsible for making matrix – the mechanisms by which these diverse components interact to establish a biofilm state are largely mysterious.
To address the gaps in the current understanding of P. aeruginosa biofilm development, our studies have focused on uncovering novel components and interactions involved in Pseudomonas aeruginosa biofilm formation, maintenance, and disassembly. Our approach has been unique in that we developed and implemented a new screen, based on biofilm morphology, which lends itself to the recognition of subtle biofilm phenotypes. We conducted a transposon mutagenesis screen using a P. aeruginosa strain background in which the biofilm-inhibitory gene amrZ was deleted. We have completed collecting and analyzing the biofilm morphologies of this transposon library and know the locations of the transposon insertions for the 62 mutants we selected using this screen.
The results of our screen include well-known biofilm-related genes, thus validating our method. Our results also include uncharacterized genes as well as annotated genes whose roles in biofilm formation are unclear. For both of these classes of results, we have constructed strains with directed mutations (deletions, complementations, and/or overexpressions) to verify the biofilm functions of the loci we have uncovered. The biofilm phenotypes of these genes have been confirmed by a qualitative morphological screen as well as by a quantitative Congo Red-binding assay, a standard read-out of structured biofilm formation.
Sara Leiman (BSc) working at her lab bench, under the supervision of Professor Richard M. Losick at the department of molecular and cellular biology, Harvard University, USA
Our group is currently focused on uncovering the mechanisms of action of two uncharacterized genes identified through our transposon mutagenesis screen. The first gene encodes a putative TetR transcriptional repressor that has been previously implicated in quorum sensing. Uncovering the mechanism of this protein may not only reveal its specific role in biofilm formation, but it may also elucidate how quorum sensing components may be leveraged for future anti-biofilm treatments.
Our second gene of interest is a hypothetical protein with structural similarity to a known P. aeruginosa cyclic-di-GMP-binding protein. Cyclic-di-GMP levels are positively correlated with biofilm formation, though the precise signaling pathways by which this secondary messenger regulates biofilm formation remain unknown. By identifying the localization and interaction partners of this putative cyclic-di-GMP-binding protein, we may be able to shed more light on the mechanisms driving biofilm formation in P. aeruginosa and find new targets for anti-biofilm compounds.
Our future directions are targeted to understanding the biochemistry of the two aforementioned genes as well as several other candidates from our transposon mutagenesis screen. Among these efforts, we plan to measure and compare the intracellular cyclic-di-GMP levels of our mutants. We also plan to implement pull-down assays, followed by mass spectrometry, to identify protein-protein interactions and complexes. Overall, our goal is to combine our genetic manipulations of P. aeruginosa with biochemical analyses to yield a more refined picture of the P. aeruginosa biofilm formation process and facilitate the development of treatments for P. aeruginosa infections.
Further reading: 1. Kirov et al. (2007) Microbiology. 153, 3264-74. 2. Foweraker. (2009) Br Med Bull. 89, 93-110. 3. Hill et al. (2005) J Clin Microbiol. 43, 5085-90. 4. Ellis T.E. et al. (2010) Infec and Immunity. 78(9), 3822-3831. 5. The Leeds Method of Management (2008) Intravenous antibiotics and Pseudomonas aeruginosa. Available from http://www.cysticfibrosismedicine.com ==============================================
Mika, a 26 year old ecologist and student of herbalism shares in her own words, her journey with Cystic Fibrosis and integrative medicine.
In many ways, CF has been a great gift, though one with many struggles and hardships. I have gained so much intellectually and spiritually from this disease, and there is no question that it has given me the motivation to live my life to the absolute fullest. This life may be short, but I am going to make the most of it!
– Mika –
Hello there! My name is Mika. I am 26 years old and live in Vermont (in the U.S. … kinda). I have Cystic Fibrosis (CF) and was diagnosed right after birth via a meconium ileus surgery and subsequent sweat test. So CF has been a part of my reality since my beginning. Although CF has been challenging and frightening at times, I am so grateful for the lessons it has taught me, and continues to teach me. I have been profoundly deepened and humbled by my experiences with this disease, and have become a wiser, more insightful person as a result. I have never “fought” CF. Why would I fight a natural aspect of myself? I strive to understand why I was given this challenge, and to learn these lessons as best I can so that I may share my discoveries with others. I struggle to survive day to day, yet I am all the stronger for it.
My journey towards empowerment has been long with many obstacles and switchbacks, yet I finally found the healing path that I am on now. I began to walk this path in earnest at age 24, after a frightening bout of hemoptysis triggered an awakening of sorts. I realized that although I had been “compliant” and even pro-active with my health for my entire life, my mental world had been stuck in victim-hood. I had given my power away to the modern Western medical institution. Without being consciously aware of it, I had believed that if I was to be healed, helped, or cured, it could only come from this institution; and if this institution could not provide me answers, then none existed. My awakening shattered this paradigm that I had been drowning in. The institution I had given my power away to began to run out of answers. What they offered was not enough. It was no longer working for me. So I took my power back and invested it in myself – my true healer. Amazing things began to happen then.
The first part of this journey related to a rediscovery of the necessity of exercise. I had been an active and athletic kid, but starting in college, exercise and sports took a back seat to my academics and my blossoming career in environmental policy. After my awakening, exercise became the foundation of my treatment plan. Being outside in nature is my favorite way to exercise, and it serves another and arguably more important purpose – it is also how I experience the spiritual aspects of the world. I spend at least an hour in the woods everyday, come rain, snow, sun, or bitter cold (and we have plenty of that in Vermont). Hiking keeps my lungs clear and my mind centered. I also began jogging occasionally and taking yoga classes regularly. Becoming very strict about exercising everyday has improved my life immensely. Although my FEV1 has declined in the last few years, my physical endurance, strength, and energy levels have dramatically improved. I can do more with less lung capacity because my muscles are so much stronger and more efficient with the energy and oxygen that they receive. I now pay less attention to the test results (which only measure a small aspect of my overall lung health) and more attention to how I feel and what I can accomplish. This has made me feel so much more empowered and in control of my own life. It has done wonders for my mental and spiritual health!
The second part of my journey was an exploration of and experimentation with different healing arts and health practitioners. Through much trial and error, I finally discovered a handful of highly skilled health practitioners in my area and most of them are covered by my state health insurance (Vermont is the best). I currently see a Doctor of Osteopathy who also performs cranial-sacral energy healing, an herbalist who is now also my professor, a network-chiropractor, and an incredible acupuncturist. I feel extremely blessed to have landed in a town overflowing with exceedingly talented complementary practitioners. It seems I was drawn here for many reasons.
A third aspect of my healing journey has been diet, and much of my website (www.cfnaturalhealth.weebly.com) is dedicated to my research and experiences with nutrition. I’ve devoted most of the last year and a half to the very close study of nutrition from a variety of different perspectives (from macrobiotic to Paleo, and lots in between). I have found a diet that works pretty well for me, yet I am constantly tweaking it as I make new discoveries and as my disease symptoms change. I control my CF-related digestive problems and my diabetes very well with my diet, and thoroughly understand the connections between my gut, my lungs, and my immune system. I am constantly scanning the latest scientific research on nutrition, as well as perusing many nutrition/Ancestral health websites, and reading many books on topics ranging from digestive health to Chinese Medicine to evolutionary biology. Health research and education is my passion and my calling. It is my goal to cultivate a deep and holistic understanding of how nutrition relates to all disease (including CF) and how to use food as medicine. The nutritional advice given to us by our CF clinics is often scientifically outdated, inappropriately dogmatic, incredibly reductionist, and can be very harmful. With my website, I strive to provide the CF community with an alternative source of nutrition and health information based on the latest scientific research, ancient healing wisdom, and personal experience. I also have begun to lecture on nutrition, digestive health, and herbalism at conferences and food coops in Vermont.
The most recent leg of my journey has been experimentation with and research on supplements and herbs for the treatment of the many complex facets of my cystic fibrosis. To deepen my knowledge of these issues in a more structured educational environment, I decided to study at the Vermont Center for Integrative Herbalism. I find it quite funny (and also totally revolutionary) that I declined admission to graduate school at the Yale School of Forestry to instead enroll in herbalism school! And I am so happy with my decision! Recently I have made some incredible improvements in my health using inhaled essential oils to combat my MRSA and Pseudomonas lung infections. I am continually reading through clinical research and talking with other smart CF revolutionaries about the latest herbal and nutraceutical experiments folks are trying. It is such an exciting time to be a CFer!
Living with CF is difficult, and often painful and frustrating, yet it is an undeniable part of my destiny; it is a central part of my role on earth and my spiritual path. I am following my dreams, making exciting discoveries, improving my health, and helping people along the way. What more could I ask for? 🙂
Tracie Lawlor Trust Patient Assistance fund was set up to directly help Cystic Fibrosis (CF) patients avail of integrative treatments. The fund has helped purchase treatments for CF’s ranging from exercise bikes, gym memberships, to acupuncture and supplements, all of which have aided in improving the quality of life for people with CF. Recently the TLT4CF have purchased a state of the art bike from Italy at cost with the very kind help of Pat Whitney and Peter Thatcher.
William Bresnan a recent transplant recipient was asked to take part in the world transplant games this year in South Africa, with disciplines of cycling and swimming however he was unable to afford a proper racing bike and train with it. He had applied to the national CF charity for gym membership but was refused and asked to wait a year due to receiving it a number of times, so he did and was refused again and was told a meeting on rules was going to take place. He then wrote a letter explaining what happened to us and how much it would mean to him, as we understand the importance of exercise for maintaining health post transplant and it is important to show inspiration to other CF’s, show them it can be done, it may be hard but this is an example with some belief and hard work, we were able to not only get a state of the art racing bike but fund treatment with a Physiotherapist in his local area and he has been flying it ever since! This is due to the many, many kind people of Wexford that have made this fund possible, We look forward to seeing him at the transplant world games next year, flying the Irish flag proudly! This would not be possible without people like you, so thank you, as any donation helps, as we do not take a wage nor salary so all your donations directly/indirectly help CF patients and further research.
This was made possible through the Patients Assistance Fund (click link for full list), this is one of many stories of how the money you donate to us has being directly used to help CF patients right now with their needs, thank you so much and remember we don’t waste your donations on wages/salaries/allowances/investments etc. the money you give is used as it should be. Please consider us in any fundraising activity in the future to help us, help many more CF’s and continue to help those that have availed of the fund thus far.
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
As a 20 year old CF sufferer, I have spent my fair share of time in and out of hospitals from a young age. I was diagnosed, later than normal, at the age of 5. I was wrongly diagnosed with asthma by my GP at the age of 3 and attended an asthma clinic until further tests were done to rule out other conditions and unluckily my sweat test came back positive for Cystic Fibrosis. It was obviously a shock to my parents as I was a very healthy child. I never had any problems with my digestive system or gaining weight and I never needed pancreatic enzymes. My only problem was my lungs which got infections every few months.
Like any other child with CF, I didn’t understand it at first. I knew I had to take nebulisers and tablets everyday but of course I didn’t really know why. I hold my hands up and say I sometimes wasn’t always as compliant as I should have been. By the time I reached my teenage years I only ever had two admissions for IV antibiotics so I was doing pretty well. When I reached 15 I noticed some changes in my CF. I was struggling to go to school regularly and my breathing was getting worse by the day it seemed. Eventually, after my Junior Cert, I hit a brick wall and I was admitted into hospital for IV antibiotics. Three days into my admission I suffered a very severe pneumothorax (collapsed lung). It was a medical emergency as the air in my chest built up so quickly that I didn’t make it to the operating theatre on time so my consultant had to make an incision in my chest wall while I was in my hospital bed. I ended up having 3 chest drains and 3 pleuradesis procedures to mend my lung. I ended up spending nearly 4 months in hospital, 2 of which were spent in the ICU. My health was at rock bottom and I had shrunk down from 9st to a tiny 6st.
After seeing the reality of CF and what it can do to you if it’s not properly managed was a serious wake-up call. I became extremely compliant with all my medications and did my physiotherapy regularly. It was very hard to start from square one. I went from having 70% lung function to 28% and I had also gone from being pancreatic sufficient to insufficient so I was started on Creon enzymes. I built myself back up slowly with healthy eating and light exercise. I had to leave school at the beginning of 6th year as I found it too exhausting and unfortunately my school weren’t the most accommodating to somebody with my condition.
I began researching alternative and complementary remedies in my spare time to see if there were any that could help heal the lungs. To my surprise, I got really into it and found myself looking up new remedies everyday. I then decided I wanted to try some and experiment with my own health to see if I could possibly get some benefits of an alternative medication or supplement. I started with the basics and something I suffered with regularly. Inflammation. This is common with a lot of different illnesses, conditions and infections. I decided to research natural anti-inflammatory agents to see if I could replace my constant supply of paracetamol and ibuprofen with something that was more gentle on the body. I looked for something that had proven to reduce inflammation rather than something that was thought to reduce it. I then began looking at herbs and supplements that could work as a natural antibiotic and help strengthen my immune system. After very careful research, here are some of the best remedies I have found that worked for me:
1). Ginger (Zingiber Officinalis)
Known benefits may include:
Helps control chronic pain
Eases the muscle & joint pains of arthritis
Minimises symptoms of the common cold, allergies and other respiratory symptoms
Ginger comes in the form of a tablet, capsule, raw or tea. I chose the tea as I’m a massive tea drinker. It tastes more or less the same as regular tea so it’s very easy to drink and I find now that instead of taking an iBuprofen or any other painkiller I’ll have a cup of ginger tea and the pain and inflammation subsides in a few minutes. I have found this extremely beneficial.
Shown to kill bacteria, viruses, fungi and parasites
Very effective pain killer
Improves respiratory health
Aids digestion & calms upset stomach
Excellent for nasal congestion
I find Oregano Oil to be one of the best natural remedies out there. It has so many benefits and some of which I have experienced first hand. I feel it has helped me fight off infections and also dampened down the severity of the infections themselves. I haven’t found it to be a good pain killer though. As for nasal congestion, it is unbelievable. Anytime I have very congested sinuses I hold the bottle of oregano oil under my nose and gently breathe in. In less than 5 minutes my sinuses are completely drained. The only pitfall of this oil is the taste. As it is highly potent, it doesn’t taste very pleasant and sometimes the taste itself can make you feel a bit sick. I found a little trick to getting it down without tasting it. I break open a creon capsule, empty out the contents, pour 5 drops of the oil in and put the capsule back together. It works great, I take it as a normal capsule and I don’t taste the oil itself.
3). Garlic (Allium Sativum)
Known benefits may include:
Has natural antimicrobial properties
Lowers blood sugar levels
Lowers cholesterol levels
Anticoagulant (Blood thinner)
Fights respiratory diseases
Inhibits cancer cells
Strengthens immune system
To me, Garlic is one of the miracle workers when it comes to health. It also works as a natural antibiotic and helps remove harmful toxins from the body. There are currently more studies being done on garlic and the effect it has on the growth of cancer cells but research so far says that it can inhibit the growth of abnormal cells.
As a CF patient, I rely heavily on conventional medicine to treat my condition and the secondary problems that come along with it but I now believe that a balance between conventional and complementary medicine is the key to good mental and physical health. Since I began using complementary medicine about 18 months ago, I feel the best I have felt in a long time. I feel more in control of my own health and I learn more and more each day about what agrees with me and what doesn’t. I don’t think complementary medicine should replace important medications for anybody but I think it should be explored more by both patients and their Doctors as I don’t think complementary medicine is a considered option as much as it should be. I think some people in the medical profession nowadays are so reliant on books and drugs that they become closed off to the thought of natural remedies. Although more is known about conventional medicine, complementary medicine has been around for much longer and proved effective for hundreds of years. Of course there are some remedies that don’t work for everyone but I believe there are some that shouldn’t be underestimated.
As for me now, I’m in my second year studying Biomedicine and Nutrition at the College of Naturopathic Medicine in Dublin. It is a 3 year diploma course with the option of an extra year to obtain a degree. I absolutely love this course and I know this is what I’m meant to do. I attend every second weekend, Saturday & Sunday 10am – 6pm, so it’s very manageable for me. I most recently aced my first year exams which I’m hugely proud of. I never thought I’d make it to college but really there’s no reason for somebody with CF to be any different. If you want something enough, you’ll do anything you can to make it happen. I have enjoyed learning more about natural ways to heal your body and I really have reaped the benefits from it. My next goal is to complete the Flora Women’s Mini Marathon in Dublin in June 2013. It’s always going to be a struggle for people with CF but it’s the struggle that makes everything so worth it and when you accomplish something, you feel on top of the world.
The Tracie Lawlor Trust does not endorse any particluar product herein nor receive any monies for displaying the said products. The information is not medical advice and should not be used as such. Disclaimer
Cystic Fibrosis is a condition that mainly affects the respiratory and digestive systems in the human body. The CFTR (cystic fibrosis transmembrane conductance regulator) is a protein found in the human body that regulates the movement of salt ions and water across membranes in the body. The CFTR gene is responsible for the expression of the CFTR protein. A mutated gene sequence of the CFTR gene results in the expression of a mutated CFTR protein – resulting the creation of a mucus layer in the respiratory tract and the digestive system which in turn results in a blockage in the movement of ions and water mainly in epithelial cells that line the lungs and pancreas of the digestive system – the condition known as Cystic Fibrosis.
One of the main complications involved in Cystic Fibrosis is the difficulty in breathing and general lung function due to the layer of mucus that lines the airways. Up to the present day, many studies have been conducted into various mechanisms of improving the gas transfer capabilities in people with cystic fibrosis. These mechanisms are physical, chemical and enzymatic. To date there have been minimal studies of using natural methods to improve lung function in people with Cystic fibrosis. In recent times however, a new breathing technique – Buteyko breathing, has come to the fore in the alleviation of symptoms of different respiratory conditions. This paper will discuss and present a case for the employment of the Buteyko breathing method as an aid in the improvement and management of lung function in people with Cystic Fibrosis. Click here for more!