Diet, alternative treatments/ healing

[Greg Ford]

I was diagnosed 2 years ago.  I am now 66.  Took Esbriet for one month and quit.  I started out building up stamina on an elliptical after I got off the Esbriet.  Exercising for 30 minutes at a low tension.  After about 6 months I was up to 60 minutes a day.  I do not overextend myself just a steady work out at a comfortable pace.  I now am up to six miles in about 60 minutes.  I try to exercise at least every other day but do not always get a chance to do so.  I limit any alcoholic drinks to just one a day.   I do not eat anything 3 hours before I go to bed.  Two days ago, I had my lung function tests and my results are the same as I was 2 years ago.  I have also lost over 30 pounds. If my children or the grandkids are sick they are not supposed to visit until they are well.  My exercise program is not a cure, but it has kept me on a plateau I believe.

[Linda Maguire]

There have been several alternative treatment suggestions as well as exercise mentioned on this forum.  Some folks recommended taking green tea extract, however I have not seen any large studies that support this.  On the other hand, there is some research to support a series of Chinese breathing techniques that have shown good results in IPF patients.  The exercises were published on the forum awhile back, & the journal article was called LHP’s Respiratory Rehabilitation for Pulmonary Fibrosis.  The exercises are simple to do & supported by research.

Anecdotally, one of the members of my IPF support group changed his diet, lost weight & started walking regularly, gradually increasing the distance.  He no longer needs oxygen, is stable, & recently walked 150 miles over a a few week period to raise money for IPF Awareness month!

I was diagnosed 6 years ago & am one of the lucky ones, in that I am not on medication (other than to treat GERD), & my PFT & CT results have remained stable since diagnosis.  I exercise regularly & try to eat a healthy diet, although I could definitely benefit from losing weight.   I think anything one does to maintain a healthy lifestyle is beneficial.

[John J Harrigan]

Mucous induced coughing has been a problem for me. Googling dietary triggers for mucous buildup, I found a number of things I never consumed much of in the first place, like sugar, soy, deep fried foods, excessive amounts of red meat. I find it completely impossible to cut out coffee, which is a trigger, but it was easy to find substitutes for processed cereals and soda.

I was able to add to my diet some suggested things like pineapple, pineapple juice, honey tea, ginger ale, and rye bread rather than wheat bread. It was also suggested to drink more water.

I’ve been doing this for a number of months, and it might have made things a little better. It certainly hasn’t hurt. My medications have remained constant throughout this period. I still cough more than most people do, but it’s been awhile since I’ve had any of the uncontrollable bouts of coughing I was having a year ago. And I’d be curious to know if others have found dietary changes to be helpful.

 

 

[Steve Dragoo]

@wranger

Hi Wesley,

I take a hand full of supplements daily but an orthopedic surgeon friend says pills are for dying people food is for living people – an adaptation from Hippocrates: “Let food be thy medicine and medicine be thy food”.

With this lovely disease (starting 6 years ago) medicine is important but the supplements have helped me a lot.  Generally, my wife and I eat healthy avoiding processed foods (mostly) and meat, and eating certain fish and chicken but a lot of veggies and certain fruits are known to help us…

Stay well…
Steve

[Denise Stogdill]

Hi Wesley,

I was diagnosed with IPF RA about 18 months ago.  I immediately changed what I ate to decrease the amount of inflammation in my body.  So, I took out sugar, gluten, flour, alcohol, soda, caffeine (except for one cup of coffee in the am????) and processed foods.  I drink loads of water, pedialyte for hydration and electrolytes and vitamins C, zinc, E and D.  I’ve since lost 85 lbs and I go to respiratory rehab and exercise on elliptical at home and free weights.  I take Ofev and Mycophenalate as well as other meds for Gerd.  I’m on oxygen for exertion only at 3lpm’s.  As I’ve come along, my body was processing my oxygen more efficiently.  However, 3 months ago I got COVID for the first time and took a small hit with my lungs.  My capacity went down around 4% and I was very disappointed! I am 64 years young and I would like to think that my progression would stay the same and not decrease.  However, I continue doing what I do and more importantly keep moving.  Everything you do will help with this disease.  Even if your stats don’t show it but your lungs will feel it.  My doctor and I agree that living this lifestyle will help slowdown the progression of this disease!  Good luck to you, keep moving and hydrate!????????

[Curt Strickland]

When I was diagnosed with IPF, I sent my diet into overdrive. I was already a vegetarian, but I ramped that up and ate mostly plant based, I also took up yoga. My disease progressed and I got stem cell therapy. I started to notice a difference after about two months. But then my wife probably got covid, January of 2019, before they knew it was covid. She probably passed it on to me and I went downhill fast. Fortunately, I was able to get a double lung transplant and I’m doing great 2 1/2 yers later. But I believe my diet and the stem cell saved my life, and help me recover quickly from my transplant operation when I was 68. You can contact me if you need more information: [email protected]

[Millie]

Diet is very important as is keeping yourself physically active. I’m on Ofev which is hard on the liver. I no longer drink any alcohol. Abstaining also helps with the digestive problems caused by this medicine. You could see a holistic doctor and see how they can help you with this. Natural remedies are always best but traditional medicine doesn’t go that route. I had PF for years before being diagnosed. It is now well advanced and I feel that I don’t have time to play around with natural remedies. Early intervention is key for the natural stuff to work. Traditional doctors know a lot but there is still a lot they don’t know, especially about PF.

[Jofac O'Handlin]

Hi All, The message to eat healthily is loud and clear and one which I have stuck to, despite the advice to avoid fibre to compensate for OFEV effects on the digestive system. I also take a cocktail of vitamins and nutriants. Keeping on exercising is vital, only walking slowly now.
People have advised taking various alternative therapies. I am investigating the compound recently featured on PFN, namely piceatannol. It is noted as a natually occurring in several foods and berries, notably red grapes, blue berries, passion fruit, and peanuts. I thought peanut butter might be a good option, and a little search revealed, 1. That piceatannol is not readily absorbed by the gut. 2. That piceatannol in the peanut is mostly in the callous(?), the red orange skin? Tests with peanut butter enhanced with the callous (normally a waste used in animal fodder) showed much enhanced levels of piceatannol.
Peanut butter seemed a good option, but is the high callous version available?
My situation, 9 years into it, 7 years on OFEV 2 x 100mg.
Was a runner / jogger till mid 2019. Now on the cusp of O2 for any exercise.
Comment, we talk about oxidation damage, and antioxidants.
How soon should one submit to taking higher oxygen into the very area that is under attack. Just thinking out loud!
Regards to all,
Joe

[Jofac O'Handlin]

Hi Steve,
It seems that we are at about the same stage. My O2 sats are about 92 – 94 at rest (creeping downward). Likewise, puffing at the top of the stairs. Have concentrators in living room and bedroom. Use as and when. Portable O2, which my wife carrys for use uphill, or against the wind. We go out for 20 to 40 mins EVERY night, except windy / rainy conditions! Sometimes I am most reluctant but go anyway. Hanging on in there!
It may be that one clutches at straws, but one hopes.
The article that I read said peanut callus, so shell or skin?. As this was from Chinese research there may be an question over interpretation. An American article on the ‘skins’, with photo to confirm, discussed the possible use of skins to enhance chicken feed. They talked about the antioxidant value and etc., which is of interest to us. One Australian maker of peanut butter seems to use skins in their formulation. Not likely available in the UK.
Cheers, Joe

[Jofac O'Handlin]

Hi Steve,This is one site referring to piceatannol:—
https://pubs.rsc.org/en/content/articlelanding/2016/fo/c6fo00685j
It suggests that it has greater potency than reversatrol. BUT.??
Regards to all,
Joe

[Jim s]

Ask your doctor to prescribe pulmonary rehab therapy. It teaches you how build up muscle tone which lowers the oxygen required to operate your muscles. The more out of shape, the more oxygen required to do anything. It’s a long program, but it’s worth it.

[Phil Ryan]

I’ve had IPF and Pulmonary Hypertension for over 2 years, and am on Esbriet and Tyvaso with minimal side effects. Diet is important, but I think emphasis on keeeping it well balanced, minimizing rad or processed meats, and keeping alcohol at a minimum is most essential. Lose weight, if you are overweight (i’m 76). I just quite alcohol altogether and lost 20 pounds and feel 100% better.

Just as important is exercise. I’m lucky enough to be able to use a local hospital’s pulmonary therapy group which I attend twice/week for an hour apiece. Includes breathing and stretching exercises, upper and lower body strength training, and about a 1/2 hour on a treadmill/
step machine, etc. It really helps, and I highly recommend that or something similar if it’s available to you.

[wesley]

Dear all,

I am SO sorry for not responding sooner, but for some reason, the notifications for this group were going into my spam.

Thank you for all the responses.

The main areas that I have focussed on are;

Diet
Lifestyle/ stress levels/ exercise
Supplments/ additonal support
Therapy

In terms of diet, I have been overall very discplined in terms of what I stopped eating and actively tried to eat. Whilst I was already vegitrian, I still consumed a fair bit of sugar (in various ways).

The key to sustainability is reducing fibrin in the body, as I am sure you aware of, fibrin is what contributes and encourages scar tissue to produce in the body, this is cryptonite to us!

I have almost cut out the following things;

Sugar
Gluten
I was vegetarian anyway, but no meat (this doesn’t have to happen)
Alcohol is packed full of sugar, sugar is the worst possible thing you can put in your body.
No smoking.
Processed foods

[wesley]

Things I actively try to eat are;

Any vegetables are high in antioxidant/ anti inflammatory, for example red cabbage, broccoli, Colliflower, kale, black raspberries, pinto beans etc.
I also take a spoon fall and half of organic turmeric eat day with black pepper mixed with nigella seed (black cumin seeds). Both of these are EXTREMELY high in antioxidants and are inflammatory.
If I eat pasta and bread, I make sure it is gluten free.

In terms of lifestyle, I stopped working Fridays which has had a very positive effect on my health and wellbeing.

Every single day I wake up and follow an exercise plan, which has been amazingly positive for my mind and body, I highly recommend you start doing this.

Part of this routine is using the following https://www.airphysio.com/ It really does work and has no chemicals in them.

[Vicky Forget]

Hi, I am exploring with herbs taken in a loose-leaf tea form (Mullein and Marshmallow root).

Have an appointment with a Chinese Medicine doctor (Wen Shu Teng from Alexandria Ontario look her up on Web) in Jan. 2023 who does acupuncture followed by deep massage plus herbs if needed. It can take as little as 3 weeks but as many as 12 weeks.

As far as diet I have lost 40 lbs. following a healthy diet and could still lose another 10. Just started with Chinese bone broths slow cooked 24 to 30 hours. Exercise is very important even as little as 3 times a week and keep moving daily at your own pace I learned that at a pulmonary rehab twice weekly for 8 weeks.

I was diagnosed in 2015 and was fine until March 2022 after having Covid for 3 weeks which triggered the IPF to progress. My respirologist discovered now I have bronchial asthma and put me on Symbicort will follow up with him next month. I am fine no oxygen but he suggests at some point to put me on Ofeu. NO thanks prefer to try all-natural approach.

I am 66 who worked in the health care field as a medical clerk for 26 years and one thing I saw was each drug a patient took another drug was needed to deal with the side effects.

Good luck young man – stay positive

[R. Chris]

Greg,I’m 71 and was diagnosed,IPF, four years ago next month. Was originally taking OFEV but was switched to Esbriet for gastrointestinal reasons. I’ve been on Esbriet now for about two years. I was wondering, Greg, why it was that you quit taking Esbriet after only a couple months. I am not on oxygen yet and do exercise but still can be short of breath from raking leaves or too quickly rolling out the trash bin. Fatigue seems a problem for us all. Never goes away and what I hear others describe “brain fog”. I can always tell I’m on a drug and it’s hardly something one would do for recreation. Like Greg, I’ll still have a drink a couple times a week but when I do, its limit is one. Seems it, brain fog, must be the Esbriet. Wondering if Greg and others experience same. I.e., I know I’m on a drug. Always.

[Greg Ford]

The side effects I had with Esbriet were spells of diarrhea and a complete lack of energy.  I also do a lot of gardening and try to spend a lot of time outdoors.  The fear of a reaction from the sun with Esbriet had me slathering myself with sunscreen a couple of times a day.  I started researching the benefits shown in the Esbriet trials in the improvement of air volume between the test group and the control group.  Yes, there is a benefit, but I could never get a clear answer on how much the benefit was to my total lung volume.  I went on a deep dive on the internet, and I finally got to the European approval documents on Esbriet.  Their documentation stated the benefit was only a 1% improvement from the control group and the approval was based upon there being no other drugs available at the time to combat the disease.  I was acting very poorly to Esbriet and decided the 1% benefit was not worth the quality-of-life issues I was experiencing.  I also was shocked by the pre-insurance cost of over $21,000 per month for the full dose.  If I live 6 months or 1 year less by not taking Esbriet I am willing to accept it.

[Nancy]

Hi Wesley,

I was diagnosed in May 2021 with IPF and later with scleroderma, and have progressed enough that I just started Ofev. I am not on oxygen, but cough a lot and have reflux. I take omeprazole for GERD.

I am also treated by a traditional Chinese medicine (TCM) herbalist and drink a tea of herbs and fungi and medicine for reflux. The tea is intended to strengthen my lungs, control mucus, among other things, and the tincture of bitters reduces reflux. There is quite a bit more peer-reviewed research on TCM which is interesting reading.

I am working toward eliminating dairy, gluten, anything artificial or processed, and I exercise 4-6 times a week for 1/2 to 2 hours – swim aerobics, pickleball, yoga, walking, and help in the fields at a vineyard. I have lost weight and feel very good most of the time with occasional bouts of major fatigue. I’m 68.

I’m using a multi-pronged approach— Western doctors and TCM, exercise, healthy eating.

Nancy Evans

[wesley]

Dear Nancy (and everyone else that has responded),

Thank you so much for response, it sounds very similar to my own approach to the diagnosis, which is to not let ‘it happen to me’, rather use the words of the diagnosis as fuel to make tweaks and improvements to me lifestyle.

I have been thinking about setting up a group, maybe zoom (or some other platform), where willing participants can meet (virtually) and share thoughts/ information and positive vibes… Or receive positive vibes if not in the mood to share them!

If anyone is interested, please let me know.

p.s I am 45, married with 5 kids. Not into strange things or allow my ego to dictate my behavior (most of the time at least). It would be a group environment of sharing, not dictation by one person or persons.

[Manzurul Khan]

I turned 69 last month and was diagnosed 2 years ago during a routine annual exam. I had no symptoms but have developed some since then e.g. coughing, fatigue. My doctor feels my Hiatal Hernia which causes acid reflux contributed to aspiration and eventual scarring around the periheries of my lungs. Lately, I have been seeing a pulmonologist at Baylor College of Medicine. He wants to put me on a Phase III trial medicine which is an inhaler. I am quite active walking 3 miles a day 7 days a week. I also play tennis occasionally. I have been active all my life. I am taking Ofev (100 mg twice a day) since January of this year. My O2 saturation is close to 100 and drops only slightly after a 6 minute walk test. My recent PFTs indicate declining capacity but I can’t explain it since I do not have shortness of breath.

My diet consists of high protein, low carb with lots of salad, whole wheat bread, low-fat cottage cheese, quinoa and fruits. I drink green tea and black tea and also take EGCG supplements. I am still working full time and will likely go part-time in 2-3 years. It really helps to read the experiences of others and makes me realize that we are all in this fight together.

GLTA

[DJ]

Have you tried laser therapy?

[Rumana]

Has anyone tried Himalayan salt inhaler to treat IPF ? I hear it’s good and has no side effects . I remember reading about it in the forum maybe someone shared a link but can’t seem to find it now .

[wesley]

Join us this Thursday at GMT6pm for our second PF ‘taking the bull by the horns’ Zoom call, with our guest Charlie Speller.

Charlie Speller is a highly experienced & multi-disciplined body work practitioner, bringing together a wealth of experience in healing connective scar tissue and a wide variety of other practices.

Have you wondered why scar tissue is created? Have you questioned if we are helping the progression of scar tissue?
Fascia and Fibrin are the two main contributors to the production of scar tissue, which means the more we have of these two things in our bodies, the quicker scar tissue will form within us.

Surely this means that if action is taken to reduce these two things, scar tissue is reduced?

Seeking answers to these questions and others will be the topic of discussion this Thursday evening at GMT (Greenwich mean time) 6pm on our second PF Zoom.

Join Zoom Meeting
https://us02web.zoom.us/j/87120657580…
Meeting ID: 871 2065 7580
Passcode: 912034

All are welcome, for those of you that want to retain or obtain a sense of control, please attend. Treatment of PF doesn’t have to only be taking a tablet, there are a multitude of things we can be doing to improve quality of life, not just physically, but mentally too.

This session is completely free of charge and Charlie receives no payment for her time.

P.s if anyone wants to PM me, I will give them my personal mobile number if they struggle to get into the Zoom call, I am on WhatsApp, so can be called/ messaged.