10 Natural Remedies ~ Complementary Therapies For Cystic Fibrosis
Our Family's Hopeful Plan: Traditional Western Medicine And Natural Complementary Remedies For CF Care
MAY 2012. We almost lost her in March. Miraculously, with the help of medical personnel at Hospital of the University of Pennsylvania (HUP), and many prayers and love from family and friends, my daughter regained enough health to return home. When admitted, she could barely breathe or walk or even stand. Now she has improved to the point where her quality of life, at the time of this writing, does not warrant the risk of a lung transplant, so she is not currently on the waiting list. We are grateful, so grateful. Every day is a blessing and a challenge, and we continue to hope (and work) for the best.
My daughter turned 25 in June and has battled cystic fibrosis - a congenital genetic disease primarily affecting the lungs - her entire life. This summer she lost a 20 year old friend to cystic fibrosis, and another young adult friend with CF was admitted to the hospital, she and the baby in her womb in danger.
Daily home care for cystic fibrosis includes many pills, inhalers, nebulized medications, chest percussion, exercises, and other respiratory treatments. Even with all of that, there is no known cure, and life expectancy is greatly diminished. For more information about cystic fibrosis, and to contribute to finding a cure and better treatments, please visit the official site of the Cystic Fibrosis Foundation.
We are determined to do everything we can to keep my daughter with us. The trouble with alternative, complementary, or natural remedies is that some can be risky and some can potentially make cystic fibrosis worse. My daughter and I, and family and friends, have looked for natural treatments that carry little risk, and the possibility of making her life longer and better. Here I will share what we are doing (in addition to continuing traditional medical care).
Image: Flower Ribbon 4 Hope Matters Cystic Fibrosis Posters by awarenessgifts
UPDATE FEBRUARY 2013. On November 17, 2012, at the age of 25, my precious daughter Caetlynn finished her life-long battle with cystic fibrosis. My loss is painful and deep. As horrible as it is to lose her, I feel deeply grateful for the honor of being her mother and for being with her in her final precious and peaceful moments in this world. I will write more about those days when I can - there was so much love and beauty in the midst of pain. She has a new body now, in some magnificent place where she can laugh and sing and dance and breathe fully and freely.
I asked Caetlynn's medical team to help me with this update, as I was concerned that this sad news could cause readers to dismiss the information provided here. The CF team reviewed the page and said that it contains good, helpful advice, and that part of why she lived as long as she did was because of "her wonderful support system, all of your hard work. Some people with CF have more aggressive disease than others."
Her CF care team also said, "I think it is critically important to emphasize that everyone's CF follows its own path. The fact that Caety died at 25 has no real bearing on what will happen to someone else. In the final analysis, all anyone can do, CF or not, is what you can do. We should all be respectful of our health and take as good care of it as possible. And we all will die someday, of something. So for us to spend our time on this earth thoughtfully and live fully, is all we can do, and that is huge."
And, "She was a pretty amazing young woman."
I will share more about Caety's life in the days to come. If you would like a glimpse into her life and the people whose lives she touched and who lifted her up with hope and prayers, please visit this facebook prayer event page created by a friend last fall when Caety's health started declining. (Update August 2013: Sadly, facebook removed the page, presumably because the event date was over. I have written a little bit here: A Grief Expressed.)
For now, I have left most of this CF Natural Remedies page as I originally wrote it, with some additions here and there. I hope that you will find some things that will help you or your loved one with cystic fibrosis to live a healthier, stronger, longer, more joyful life.
Cherish each moment.
UPDATE APRIL 2013. I am more and more impressed with Mandy B. Anderson, a health coach with CF. I wish I had known about her a couple years ago - I think Caety could have benefited from being coached and encouraged by her. Here's Mandy's recent article about integrating traditional and natural medicine.
(1) Foods To Naturally Treat ABPA And Excess Mucus In Cystic Fibrosis
Allergic Bronchopulmonary Aspergillosis Remedies
ABPA (allergic bronchopulmonary aspergillosis) is a serious complication affecting a small percentage of people with cystic fibrosis. My daughter has had it for years. Prednisone (steroid) and Itraconazole (anti-fungal) are the standard medical treatments, and are only partially effective. (Update: We just found out today, August 14, 2012, that the anti-fungals are more effective if taken with carbonated drinks!)
I was very happy to find this page describing herbal remedies for aspergillus: garlic, goldenseal, olive oil, and coconut oil. Capsules of concentrated substances found in health food stores pose some risk to people with cystic fibrosis, whose bodies are susceptible to side effects in many internal organs, including the heart and liver. For this reason, we are using the recommended plant products in more natural forms.
I bought a jar of organic coconut oil (a new experience for us), and began cooking more with extra virgin olive oil and fresh garlic. I put these ingredients into everything I possibly can.
Here are some simple recipes I have been making for my daughter:
Garlic-EVOO Pasta Salad
Rotelle pasta, cooked and cooled
Raw garlic, minced
Sweet pickles, chopped
Extra virgin olive oil (EVOO)
Mayonnaise made with olive oil
Combine ingredients according to taste. Add other vegetables as desired. Chill before serving. My daughter doesn't like red pepper, so I just used some on the top to make a heart for love and color.
I keep a container of this salad in the fridge, and she eats it as part of her lunch or snack. The garlic it contains is also good for her CF-related diabetes.
Cut an apple into small pieces and boil gently in a pan with some water. While cooking, add a dollop of coconut oil, lots of cinnamon, and a dash of sea salt. Mash into desired consistency. Serve warm or chilled.
(Cinnamon also helps to lower blood sugar.)
Foods To Naturally Decrease Mucus Production In Cystic Fibrosis
Garlic, onions, watercress, horseradish, mustard, parsley, celery, rose hips tea, pickles, lemon, and anti-inflammatory oils (nuts, seeds) decrease mucus production.
My daughter has been squeezing half a lemon into a cup of warm water to drink every morning.
We are adding watercress to salads and omelets.
She snacks on nuts and seeds.
ABPA Poll - What have you discovered to help with ABPA?
Do you or your loved one have ABPA? Please leave a comment to share what helps your condition.
(2) Foods To Naturally Lower Blood Sugar - Cinnamon And Coconut Oil Remedies For Managing Cystic Fibrosis-Related Diabetes
CF-related diabetes (CFRD) develops in many people with cystic fibrosis as they get older, presumably due to the way CF affects the pancreas. When blood sugars remain high in a person with CFRD, the lungs are adversely affected, which in turn raises blood sugars even higher. This also contributes to dehydration and increased heart rate, which also become part of the vicious circle. Even with insulin, CFRD can be difficult to control. Cinnamon (as well as coconut oil - recipes above) can help.
Here are some ways to include more cinnamon:
- Sourdough toast (sourdough bread has a lower gylcemic index), spread with coconut oil and sprinkled with cinnamon.
- Baked apple, filled with coconut oil and cinnamon before baking (45 minutes at 350').
- Sweet potato with coconut oil and cinnamon.
- Oatmeal with coconut oil and cinnamon.
- Fruit smoothies with coconut oil and cinnamon added to other ingredients (we also put hemp seeds in smoothies).
Blueberry Coconut Almond Baked Oatmeal
I was so excited to find this recipe today (August 7, 2012) while searching for a healthy recipe for all the blueberries I had on hand. It uses several of the ingredients mentioned on this page - sea salt, cinnamon, coconut oil, almonds - as well as nutrition-packed oats and blueberries.
I made it right away and it tastes great! The recipe was created by Ann Fulton and is posted at her website: The Fountain Avenue Kitchen - Blueberry Coconut Almond Baked Oatmeal.
Read More About Health Benefits Of Spices, Herbs, And Other Food - (External Link)
- Healing Food-Spices-Herbs | Scoop.it
A collection of informational web pages about the health benefits of turmeric, curry, paprika, bananas, and more.
Do you or your loved one have CFRD? Please leave a comment to share what helps your blood sugar.
(3) Massage Therapy To Naturally Help Cystic Fibrosis
I massage my daughter's back at least once a day, usually twice. She requests it regularly because it makes her feel better - reduces stress and pain. The web pages listed below support her experience of massage and inspire me to improve my self-taught techniques.
- Benefits Of Massage Therapy For Children With Cystic Fibrosis | LIVESTRONG.COM
The Cincinnati Children's Hospital Medical Center recommends that massage therapy be used in youth with cystic fibrosis due not only to Hernendez-Reif's findings, the sole study to investigate the effects of massage on children, but also based on stu
- The effects of massage therapy in improving outcomes for youth with cystic fibrosis: an evidence rev
The effects of massage therapy in improving outcomes for youth with cystic fibrosis: an evidence review from Pediatric Nursing
- Touch Therapy Improves Symptoms of Cystic Fibrosis
Massage, in combination with musculoskeletal physiotherapy techniques, led to an immediate alleviation of pain and greater ease of breathing among adults with cystic fibrosis, according to recent research.
- Massage Recomended for Cystic Fibrosis Cedar River Medical Massage - Better Health Tips
The potential benefits of massage therapy on individuals with cystic fibrosis (CF) and other chronic pulmonary conditions include: decreased pain, muscle tightness, and anxiety; improved mood, breathing, pulmonary function, muscle strength, sleep, re
- Massage Therapy for Cystic Fibrosis: Breathe Easy | Spa Week Daily
Massage therapy may provide some relief for cystic fibrosis sufferers by reducing stress, improving mood, and increasing proper breathing.
- University Of Maryland Medical Center - Complementary Medicine: Massage
What is massage? Massage is a "hands on" treatment in which a therapist manipulates muscles and other soft tissues of the body to improve health and well being. Varieties of massage range from gentle stroking and kneading of muscles and other soft ti
Massage Poll - Have you tried massage to help CF?
Have you or your loved one tried massage to help with cystic fibrosis symptoms? Please share your experiences with massage.
(4) Water And Sea Salt To Naturally Help Cystic Fibrosis
People with cystic fibrosis need more salt than other people. They also need plenty of water to remain adequately hydrated. Dehydration causes many complications, including thickening of mucus in the lungs, which makes it even harder to cough the mucus up and out.
In addition to drinking as much water as possible throughout the day, and adding sea salt to many foods, my daughter is now using "the water cure." This simply means that once or twice a day, she places some sea salt on her tongue and then drinks a full glass of room temperature water. According to the information found at the link below, this is supposed to provide great health benefits for cystic fibrosis, asthma, and diabetes (among other things). I don't know if it will live up to the near-miraculous claims, but since she needs extra salt and water anyway, it certainly seems worth a try.
(5) Tapping (Emotional Freedom Technique)
EFT Complementary Treatment For Cystic Fibrosis
"Acupuncture may alleviate symptoms of cystic fibrosis. Acupuncture may help enhance immune function, normalize digestion, and strengthen respiratory function." University of Maryland Medical Center
Tapping, or Emotional Freedom Technique (EFT), has been called "needle-free acupuncture." Instead of using needles, you use your fingertips to tap on specific points on your body to release blocked energy. Tapping is used for many conditions, including both physical and emotional concerns. After my daughter and I participated in the online Tapping World Summit, she began using this technique on herself.
How To Tap - EFT
EFT For Illness And Disease
- A personalized EFT tapping script for a man with Cystic Fibrosis. - My Seeker's Blog
This will give you an idea of how tapping can be applied for cystic fibrosis.
- Pain Free EFT
Most recently, advanced EFT applications have been demonstrated on clients with serious diseases at a series of workshops in the US and England. Participants and clients have walked away with measurable relief from Parkinson's Disease, Cystic Fibrosi
- Report from Dallas EFT Seminar, Feb 2005 - Thriving Now
We're also encouraging those suffering with diseases and even "death sentences" to remember that a disease diagnosis is just a label we put on a collection of signs and symptoms.
- EFT Therapy - EFT DVD Movie teaches about EFT Therapy
EFT Therapy is acupuncture without the needles. Watch the EFT movie. EFT Therapy often works when nothing else will. EFT Therapy is a universal healing aid because it's good for everything. Learn EFT Therapy from EFT DVD's, videos and movie.
EFT For Cystic Fibrosis
(6) Affirmations And Prayer For Cystic Fibrosis
When my daughter was 2 1/2 and in the hospital, a friend wrote down an affirmation and told me to read it several times a day. It was something like, "Great is the peace and undisturbed composure of my child." I didn't really get it at the time - I was more into prayer, rather than affirmations - but I did it anyway (which is probably why I still remember it all these years later).
Now that I have branched out in my thinking and beliefs, I understand more about the benefits of stating positive affirmations. So, I created a new one for this time in the life of our family, and I declare it many times every day:
"Great is the robust health and vibrant joy of my daughter."
In addition, I pray to God for help, healing, strength, comfort, and miracles. Other people, all across the world, pray for us too. Even if you don't believe in God, you can pray. A few years ago, I saw a deeply touching episode of "House." A man named Esteban was heartbroken because the doctors were saying there was no hope for his beloved wife to recover. Here is a beautiful and profound moment:
(Esteban is crying and praying by candlelight in the chapel)
[House walks in and joins him]
House: I was told you didn't believe in God.
Esteban: I don't. I promised my wife I do everything I can to fix her, if I don't pray, then I don't do everything.
(Click here for full episode transcript).
For a fascinating perspective on miracles and prayer, please read the story found at this link (I stumbled upon it last week):
- FÃ¡tima, Portugal --The Secret to Miracles | The Key to Happiness
FÃ¡tima, Portugal has a phenomena's, which sometimes occurs--the blind see, the crippled walk, the diseased are miraculously healed. But not everyone who comes here is healed, herein lies the secret, "They were all thinking the same thing while the h
That's Why I Pray - Big & Rich
(7) The Healing Code And Healing And Recovery - The Healing Code By Alex Loyd, Ben Johnson
A caring facebook friend from across the country recommended this book to us when she saw my continual status updates asking for prayer and positive thoughts, as well as my search for other ways to help my daughter.
My daughter read the book, and then told me about what she read. There is a technique and a prayer to be used by the person needing healing, and a variation for other people to use on her behalf. The technique involves simple hand positions to be used for 6 minutes, 3 times a day, simultaneously with affirmations and visualizations of the desired outcome.
It's not clear to me how or why this is supposed to help, but there is some evidence that it has in some cases. The important thing is, it doesn't hurt to try, and it's actually rather relaxing and uplifting, if nothing else. I would be happy to share the basic technique freely with anyone who asks.
Healing And Recovery By David R. Hawkins
This book was recommended by a friend who has used the practices and concepts it conveys to heal some of his own injuries and health issues. My daughter read it and applied what she could. She says that even if it doesn't end up helping her physically, she feels she gained important value from it spiritually.
(8) Yoga And Other Exercise - For Cystic Fibrosis
"Research demonstrates a clear link between regular exercise, weight gain, body mass, lung function and survival in CF" (source)
My daughter takes walks, uses a treadmill and bike, gardens, and practices yoga. I asked her what tips she would give someone with cystic fibrosis who wanted to incorporate yoga into his/her health plan. Here's what she said:
- Take some classes before doing yoga on your own at home. Classes are available at most community centers and health clubs. Talk to an instructor about what type of class is appropriate for your fitness level.
- Subscribe to the Yoga With Esther Ekhart youtube channel. and follow along at your own pace.
- Use the book . Yoga Journal's Yoga Basics: The Essential Beginner's Guide to Yoga For a Lifetime of Health and Fitness
Exercising With Cystic Fibrosis - One Young Woman's Personal Story
- Above and Beyond - January 2013 - Connections - CF Foundation
January 2013 - Twenty-three-year-old personal trainer Kellie Washburn, who has cystic fibrosis, exercises her right to live a healthy life.
Study: Cystic Fibrosis Patients Struggle to Exercise - Published In The Journal CHEST
This article, published in November 2012, uncovers more reasons people with cystic fibrosis may have an impaired ability to exercise - due to poor blood vessel function. I have to admit feeling a bit discouraged reading it, because it would appear that one of the most valuable therapies for CF (exercise) is possibly even harder to accomplish than I had previously thought.
Until research reveals more information and/or solutions, it seems the best thing to do is to exercise the best you can and discuss your progress, difficulties, and concerns with your health care team. Don't give up!
- Study: Cystic Fibrosis Patients Struggle to Exercise - MedicineNet
Children and teens with cystic fibrosis have impaired blood vessel function, which may affect their ability to exercise, a new study suggests.
Cystic Fibrosis Fitness Plan Tips From A Man With CF - "Don't underestimate what exercise can do for your lung function, overall health, and emotional well-bein
Exercise Poll - What kind of exercise do you or your loved one with CF do to maintain and improve health?
What kind of exercise do you do the most? Please share your thoughts, questions, and exercise tips in the comments section.
(9) Fresh Air And Sunshine
Natural Remedy For Cystic Fibrosis
"It is likely that CF patients have decreased vitamin D synthesis. In the normal population, 90% to 95% of the vitamin D requirement comes from exposure to sunlight. Healthy individuals can obtain their vitamin D requirement by exposing either their hands, face, and arms, or arms and legs to sunlight. The amount needed is 2 or 3 times a week in the spring, summer, and fall to about 20% to 25% of the amount of sunlight it would take to cause a mild pinkness to the skin [8, 28]. Many CF patients actively avoid sunlight exposure due to photosensitivity from some antibiotics. Though normal individuals store vitamin D produced in the skin to be released during the winter, cystic fibrosis patients who are exposed to the sun may have little body fat and may store less vitamin D, further exacerbating the problem" (Vitamin D Deficiency In Cystic Fibrosis - International Journal Of Endocrinology).
Careful exposure to sunshine for short periods at a time is very beneficial to people with cystic fibrosis. Vitamin D and breathing fresh outdoor air (while taking precautions for allergies and temperature sensitivities) are invaluable to health. My daughter spends time outdoors almost every day - reading at the picnic table in the back yard, watering plants, pulling weeds, or walking.
February 2013. This is a recent article about Autogenic Drainage, a conscious breathing technique that can help clear mucus from lungs. My daughter learned Autogenic Drainage several years ago, and used the technique at times, but not on a daily basis.
- Conscious Breathing Clears Lungs
Interview with Jean Chevaillier, founder of the "Autogenic Drainage" technique. Jean Chevaillier has spent his entire career working at the Zeepre...
Natural Complementary Cystic Fibrosis Remedies Around The Web
There are always ideas to investigate. It can feel overwhelming. Here are some natural remedies that other people have tried.
- Cure Cystic Fibrosis
An Earth Clinic selection of remedies to Cure Cystic Fibrosis.
- All Natural Cystic Fibrosis Treatment DoTerra
DoTerra Essential Oil Treatment For: Cystic Fibrosis Cystic Fibrosis is a genetic defect that occurs when both parents carry the defective gene.Â Statistically 1:3000 births of white parents will result in this problem. The defective gene causes the
- All-Natural Treatments for Cystic Fibrosis - Yahoo! Voices - voices.yahoo.com
While medical treatment should not be avoided, there are several all-natural treatments for cystic fibrosis that should be explored.
- Cystic Fibrosis and Natural Healing Methods
What is Cystic Fibrosis? Which medicinal herbs does solve the mucus? Hyperacidity and its danger; Does essential oil involve a certain opportunity or risk? What is Airnergy? All about Glutathion.
- Cystic Fibrosis Therapy: Natural Self-Oxygenation
Treatment of cystic fibrosis with the therapy that involves breathing correction to improve blood gases and cell oxygen
NEW Information: Frankincense Essential Oil For Better Breathing, Immunity, And Depression Help - Recommended By Mandy B. Anderson, A Health Coach Who Has CF
I just found out about the health benefits of Frankincense oil for people with cystic fibrosis. I recently started following health coach Mandy B. Anderson on facebook and feel inspired by her upbeat posts and sharing of what helps her as she deals with her own CF. Today (February 2, 2013) she posted about how much Frankincense helps her breathing, depression, and anxiety, so I looked into it and I think it's definitely worth a try.
Click here for more information on Mandy's website about this promising essential oil.
Although therapeutic grade essential oils are more expensive, I have heard that they are much more effective than less expensive oils. Amazon's price is lower than other places I have looked. Amazon.com FRANKINCENSE Therapeutic Grade Essential Oil - 15ml
Recommended Books For Cystic Fibrosis Care
We first used this cookbook when the children were little and my older son was reading the delightful Redwall novels by Brian Jacques. The recipes are still favorites of his. They use a lot of fresh fruits and vegetables (the story characters are mostly herbivorous animals) including many that are particularly good for cystic fibrosis. Recipes include Great Hall Gooseberry Fool, Hare's Haversack Crumble, Apple Snow, Gourmet Garrison Grilled Leeks, Vegetable Casserole A La Foremole, and Crispy Cheese 'n' Onion Hogbake. I highly recommend The Redwall Cookbook, along with the novels that inspired it.
The yoga book recommended by my daughter.
Products We Buy From Amazon To Help Treat Cystic Fibrosis
"Healing takes courage, and we all have courage, even if you have to dig a little." ~Tori Amos
Be Brave ~ CF Bravelets For Women - $10 Donated To Support Cystic Fibrosis With Each Bravelet Bracelet Purchase
Photos used with permission ~ Bravelets.com ~ Click to order
A dear facebook friend whom I have yet to meet in person bought me one of these beautiful bracelets for Christmas. I wear it almost every day to remind myself to Be Brave like Caety was. I also bought one for my other daughter, Robyn, for Christmas.
Whether you are fighting the CF battle or longing for a loved one who is gone, these wearable words will encourage you while also contributing financially to the search for a cure.
Be Brave ~ CF Bravelets For Men - $10 Donated To Support Cystic Fibrosis With Each Bravelet Bracelet Purchase
This is the men's style of the CF Bravelets. My two sons love the ones I gave them for Christmas in memory of their beloved sister and as a reminder to them to Be Brave as they go on without her here on earth.
Be Brave ~ Adjustable CF Bravelets For Children Or Adults - $10 Donated To Support Cystic Fibrosis With Each Bravelet Bracelet Purchase
Bravelets newest addition - child-friendly and waterproof CF Bravelets bracelet.
Note: Bravelets are available in about 20 colors for 70 causes, depending on style (men's, women's, or adjustable), and the company is adding more all the time.
"Look at hopelessness in the face and say: 'We are simply not meant to be together.' Hold courage's hand and walk away." ~Dodinsky, www.dodinsky.com
I hope that reading about our family's plan to care for my daughter's health has been beneficial or meaningful to you in some way. Thank you for allowing us to share our journey with you.