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  • O2 and Essential Oils

    Posted by Steve Dragoo on September 5, 2023 at 10:45 pm

    There are a number of good essential oils for we IPFers and all PFers (ILDers too) and I am interested in discovering the best oils for the typical atomizer but maybe more importantly adding a drop or two to my O2 reservoir such as Eucalyptus, Frankincense Lavender, Lemon Grass, and Bergamont. There are others to be sure. but have you tried any in the O2? What is your experience with them? Thanks!

    Jan replied 8 months, 4 weeks ago 8 Members · 12 Replies
  • 12 Replies
  • David Bennett

    Member
    September 7, 2023 at 2:44 pm

    You have a serious disease that requires serious medication to slow its progression. Both Ofev and Esbiet have unpleasant side effects, but the sooner you start, the less progression of the disese you will experience. Supplements might help somesideissues, but they do nothing to slow the underlying disease. The best course is to take the medication and use supplements if you want. Death by respiratory failure is very low on my list of desirable ways to go

    • Steve Dragoo

      Member
      September 7, 2023 at 11:40 pm

      @David Bennett

      Dave – I have had IPF for almost 7 years (next month) and at 74 other issues too. Also had 2 acute exacerbations the first 1 – almost died; 2nd much milder. Part of that is because I do a lot of research into supplements and am willing to take risks since there is no treatment available here in the Philippines. So after the 2nd flair-up, I started various supplements and they helped. I used to walk our stairs only a few times per day as needed and always used O2 for a few minutes each trip. Now I walk the stairs about 40 times a day, 6 days a week – still use O2 but not every tip. Of course, diet, water, and Spiritual walk are key – especially my Spiritual walk.

      What do you know and can share about essential oils?

      Stay well…
      Steve

  • Dale Winter

    Member
    September 7, 2023 at 2:45 pm

    Steve, how have you determined that many essential oils are good for people with IPF/PF or other ILD? Has a Dr. Told you? Medical studies? Would just be curious, because I have NSIP, which of course is in the ILD family, and my wife is BIG into essential oils. Please let me know. Thank-you.

    • Steve Dragoo

      Member
      September 8, 2023 at 12:00 am

      @Dale Winter

      Dale – I know little about the oils other than several papers on the internet. I used them years ago and at the least, they are relaxing but I have noticed things like peppermint, and a treat I like – wasabi peas help open my sinuses so getting something like eucalyptus in my O2 may or may not help open my lungs. I do a fair amount of research regards supplements and take a number but there are some experts on PF News and hope they will add in. Think of it like this: Vicks Vapo-rub was used by every mom in America when I was growing up – for the purpose of opening our lungs when we were sick. It has (or used to) have eucalyptus in it.

      I am willing to take risks on supplements and things like this because I have had IPF for 7 years next month and other issues. So I have nothing to lose and for the most part what I have tried and take help – sometimes a lot…

      Stay well…

      Steve

  • Dale Winter

    Member
    September 9, 2023 at 4:14 am

    Thank-you for your reply Steve, much appreciated. Stay as well as you can.

  • Sue Ann

    Member
    September 13, 2023 at 9:25 am

    Steve,

    I try to stay away from scents and fragrances since they make my lung feel like they are constricting, so I have little to offer you about oils.

    BUT, I am very curious what you have done to be able to go from 2 fights of stairs to 40? Despite being on both antifibrotics, doing pulmonary rehab, I’ve really declined in the last 6 months. What has helped you improve?

    Sue

    • Steve Dragoo

      Member
      September 19, 2023 at 4:43 am

      Hi Sue – sorry for the delay but we had no internet for a few days here in the Philippines. Because I have had IPF 7 years there are many items I have researched and decided what works for me at the moment. I don’t know your situation so a little reluctant to say try this or that. Please PM me and we can discuss this more thoroughly as I am interested in helping and discovering more that will help us with this lovely disease.

      Stay well…
      Steve

  • jonathan-poland

    Member
    September 14, 2023 at 2:24 pm

    Since my progressive interstitial lung disease (pILD) was almost certainly caused or exacerbated by long-term machine oil exposure (on a submarine and Navy shipyard), I would suggest that any aspiration of any oil into the lungs is a BAD idea!

    Further, since the mixture of oil vapor, in any quantity, with concentrated O2 is explosive, I would suggest that what you propose might cause a loud-rapid end to your lung problems.

    IMHO the term “essential oil” is a misnomer. The only “essential” oils are the ones that your body produces on its own.

    • Jan

      Member
      October 25, 2023 at 2:11 pm

      Hi, Jonathan, such a bummer that your service caused interstitial lung disease. What you say makes perfect sense. Beauticians using hair spray have also had lung damage. Agree with you & i feel that breathing in any oil can be detrimental for air exchange.

      Thanks for your words of caution.

      Jan

  • Sharon

    Member
    September 14, 2023 at 5:03 pm

    I am going on 2 years with mild PF. My acupuncturist who also has a Master’s in Chinese medicine recommended Green Mandarin spread over your collarbones. I go to him for my back, but when I told him about my PF, he put needles in the collarbone area, the lung nexus. And told me of a friend with another type of lung impairment, who used Green Mandarin, took a hike into a higher elevation & did better than her friends. I tried it for a while, but didn’t notice any difference. (I am also on Symbicort, but can’t tell if it’s doing anything, either.) He also recommended Natura 25 mg food-grown zinc & TRU Niagen Pro 500 for cellular energy & repair. I am seeing a new pulmonologist at the end of this month. My former one goes through the motions–6 months after prescribing Symbicort, he asked if I rinsed my mouth afterward… Luckily I had read the directions. His assistant gives me a breathing test & he says I’m still in the normal range. That’s it. I don’t notice any breathing impairment except if lifting something heavy or walking uphill. Scary, but not terrible exacerbations both times. I don’t do those things anymore.

  • jayesim

    Member
    September 20, 2023 at 6:50 am

    I found these articles. Please be careful, and maybe check with your doc about inhaling EOs.
    https://www.reviewjournal.com/livewell/are-essential-oils-good-or-bad-for-your-lungs-2900644/
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9092961/

    • Steve Dragoo

      Member
      September 21, 2023 at 11:41 pm

      @jayesim – that was informative. Basically probably ok in a nebulizer but not recommended for an O2 concentrator…

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