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
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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? 🙂
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
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
Groundbreaking new research into the potential health benefits of a martial art could help improve the lives of youngsters who have one of the most common hereditary lifethreatening diseases in Britain and Ireland. The study will explore how tai chi can help people with cystic fibrosis to manage their condition and enjoy a better quality of life. Professor Nicola Robinson, an academic Press Release