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TheSaltyOne
03-22-2014, 04:32 AM
**This by no means is "official" help for CF. This is simply my experience and what I have discovered from personal use. Sorry for the lengthy post but it is worth reading. Also, I'm trying to help and post this to a lot of my CF forums so it might be filled with some obvious info.


MY PROBLEMS: I have not had many issues until 5 years ago. For the first couple of those years I was required to have 2 week hospital admissions for IV antibiotics every few months, then as time progressed and my lungs continued to scar my admissions became more frequent causing more resistance to various antibiotics. A big problem with today's antibiotics is that the bacteria build up resistance to them and the antibiotics begin to not work as well as they once did. The bacteria in my lungs have built up a lot of resistance to antibiotics that I used to be able to use, which made me feel great, and now they barely make me feel better, if at all. For the past almost year and a half I was in the hospital every 2 weeks for a 2 week admission with the same bacteria that I usually grew in my lungs (MRSA Staph and Pseudomonas) while being treated with IV antibiotics because it seemed oral antibiotics weren't strong enough to fight off my infections anymore.


MY SEARCH: So only being able to stay out of the hospital for 2 weeks at a time I began to weigh my options and look around for what could help, if anything. I began seeing a reflexologist as I heard they could be of help and I didn't have much to lose as long as it didn't involve stopping any of my treatments. I didn't see immediate benefits but that doesn't mean it didn't help. The reflexologist also happened to be a essential oils distributor for young living. She urged me to try the oils and so I gave it a shot. I first began applying Oregano (I was told it was very good for antiviral and infections) to my feet numerous times each day, I had to be admitted again during this time period, and although I did not see a huge improvement it did seem like I felt much better much quicker on the same antibiotics during this 2 week admission (felt better in 1 weeks time where it normally takes 10-12 days to start to feel an improvement). The only difference was that I was using the oregano oil. This surprised me but I was still skeptical cause it wasn't CERTAIN that the oregano oil helped, just probable. I continued to use the oregano oil twice a day but still ended up in the hospital 2 weeks after I was released so I began to lay off of it and somewhat let down that it didn't seem able to keep me out of the hospital.
I kept looking for options and answers and after extensive research and testimonials I decided to try the oils one last time but this time with a diffuser instead of just topically. I began getting sick again, went on a road trip to visit family for a couple of days and knew as soon as I got back I would have to be admitted once again. Luckily I received my oils diffuser in the mail by the time I got back and picked up my oils beforehand.

WHAT WORKED: The oils I used were Thieves, R.C, Lemongrass, Melaleuca alternifolia, Oregano, and Frankincense. I used these particular ones because I have read about how they are antiviral, anti fungal, and/or killed bacteria, especially Lemongrass/Melaleuca killing MRSA Staph and Thieves killing Pseudomonas. I used 5-10 drops of each oil then filled the rest of the bottle up with distilled water until it reached about 3/4 of the bottle. For the next 3 days I diffused these for 2-3 hrs per day and rubbed lemongrass and thieves on my feet morning and night. On the 4th day I felt great! No kidding.. I was shocked. Still am seeing how I have been diffusing them for 4 days straight then taking a few days off and repeating and have stayed out of the hospital for 7 weeks and 1 day now!!! This is the longest record since over a year ago. Within the 7 weeks I have started to fill ill twice and both times I felt great after diffusing and applying to my feet for a few days. I am so thankful and amazed to find these oils being so beneficial. I plan on continuing to use these essential oils and hope to stay out longer and longer.


NOTE: I am not a distributor for Young Living, have done my research and have read many many forums on what essential oils companies are reputable and which are not. Young Living essential oils are all I have tried so far and I have had success with them. I am currently searching for a less expensive company but will admit they definitely work.

NateJS345
03-22-2014, 11:50 AM
Hi Salty,
I have a quick question or to two. :) What are you using to diffuse them with? What kind of bottle are you using?
Thank you

aandrwest
03-22-2014, 12:43 PM
We had similar results with my 8yo son who had first cultured pseudo in August of 2012. After 1 1/2 years of constant failed attempts of eradication with ABs I was at my wits end so tried using Thieves on his feet morning & night and diffusing for a few hrs every night as he slept. 4th March he had a clear test come back and me being paranoid got another done last week and it has come back clear too!!
I too used YL oils but made my own thieves style oil as it was way cheaper to mix it up myself.
I too have looked for cheaper oils with the same qualities as YL but can't seem to find any so I just joined up as a distributor solely for the big discount 😊.
I hope you continue to feel better.
Bec
🌹

TheSaltyOne
03-22-2014, 06:32 PM
NateJS345 - I'm using a essential oils diffuser. The one I picked after a lot of reading on what kinds there are and which one I thought would work best for me based upon my condition and price wise was the Aroma Ace Diffuse. I'm sure you could google it easily but I found it on amazon for about $150. It comes with two of what I call bottles or vials I guess. They are darkly tinted and hook on to the back of the diffuser. I put whatever oils I want to use in there and fill the rest with distilled water.

aandrwest - Sounds awesome. I am looking to buy Aromatics Internationals essential oils next. I have read great reviews and a lot of hype on how much people trust them and believe they have great quality. If I do not see the same if not better results with these then I'm sure I will be forced to pay for YL oils also. If you don't mind though, how much do you usually pay for oils being a distributor or I guess how much of a discount do you get? Is there any catch or what all am I looking at if I were to become a distributor? Please note... I am not planning to sell to other individuals, I'm just doing this to help me with CF and do not know of anyone else wanting oils. So please take that into account if you think I would be saving a lot of money becoming a distributor. I have just read that you end up with a stock pile of oils because you have to buy so many from YL if you want to actually save money.

laneyb
03-23-2014, 01:48 PM
Hi thanks so much for posting your story. I am very interested and excited to try this also using this thieves oil. I have CF and would try anything to eradicate pseudomonus.
I have a couple of questions, do you rub the oil directly onto your feet and when do you do this? My other question is how exactly do you diffuse the oil, in an oil burner in the room you are in or do have a special machine for it to ensure you are breathing it in?
I am Irish lady with CF leaving in France. I looked up the oil, thieves oil and looks like I should be able to buy it very easily here.
I look foward to hearing from you .



NateJS345 - I'm using a essential oils diffuser. The one I picked after a lot of reading on what kinds there are and which one I thought would work best for me based upon my condition and price wise was the Aroma Ace Diffuse. I'm sure you could google it easily but I found it on amazon for about $150. It comes with two of what I call bottles or vials I guess. They are darkly tinted and hook on to the back of the diffuser. I put whatever oils I want to use in there and fill the rest with distilled water.

aandrwest - Sounds awesome. I am looking to buy Aromatics Internationals essential oils next. I have read great reviews and a lot of hype on how much people trust them and believe they have great quality. If I do not see the same if not better results with these then I'm sure I will be forced to pay for YL oils also. If you don't mind though, how much do you usually pay for oils being a distributor or I guess how much of a discount do you get? Is there any catch or what all am I looking at if I were to become a distributor? Please note... I am not planning to sell to other individuals, I'm just doing this to help me with CF and do not know of anyone else wanting oils. So please take that into account if you think I would be saving a lot of money becoming a distributor. I have just read that you end up with a stock pile of oils because you have to buy so many from YL if you want to actually save money.

laneyb
03-23-2014, 01:55 PM
this sounds so good. I am going to try this as to eradicate pseudo would be so great! I am an Irish lady living in France. I'm excited to try this. I have a hospital appointment in 2 weeks, I wonder if results would start showing or is that too soon.
can you tell me did you rub oil directly onto your son's feet? or do you need to mix with water? how do you diffuse the oil at night? I would like to start doing this asap. thank you for your post.
elaine.

aandrwest
03-23-2014, 05:25 PM
The only catch is you have to buy a $45 start up kit which has a few oils in it and advice on how to use oils. The discount is around 28% on most things. I too am the same, I have no intention of selling to others or making $$ from the oils. If friends or family want anything I'd always give them the discount price.
I was lucky enough to meet a lady who is seriously crazy about these oils and they have an online program called young living university where you can watch clips they have made on how to use these oils for every ailment under the sun!! They also have a wonderful Facebook page that has even more experts who are full of great advice- they are serious power sellers though which does get a bit tedious but it's a small price to pay for their great advice 😜
if you are keen to join as a distributor and join their team let me know (as with any selling scheme like this you have to join using their seller ID 😒. Either way joining as a distributor with or without using them you will only have to pay the start up kit fee of $45 then you get the discount.
ps I'm in Australia so not sure if the $45 a flat rate all over. I'm pretty sure it is though.

aandrwest
03-23-2014, 05:32 PM
this sounds so good. I am going to try this as to eradicate pseudo would be so great! I am an Irish lady living in France. I'm excited to try this. I have a hospital appointment in 2 weeks, I wonder if results would start showing or is that too soon.
can you tell me did you rub oil directly onto your son's feet? or do you need to mix with water? how do you diffuse the oil at night? I would like to start doing this asap. thank you for your post.
elaine.

Hi Elaine,
I rub the oil directly on the soles of his feet. Just a few drops on each foot and I pay attention to the reflect points for the lungs & Bronchi on his feet. I'm not sure the the reflex points actually work, but can hurt right?!! Here is the chart I found and now use. I also diffuse the oil in a cold air / water diffuser. The best ones are the ones Salty mentioned above however I couldn't afford one of those and feel this one is working. Just need to use filtered water and obviously keep it clean.
Good luck with it.
Bec
400

TheSaltyOne
03-23-2014, 11:13 PM
Yes, some say to dilute the oils with a carrier oil (such as pure vinegar oil) but I have always just rubbed a couple drops on the bottom of each foot morning and night without using a carrier oil, or sometimes if I am in a hurry I will rub a couple drops on my wrists instead.

I diffuse the oils using a essential oils diffuser. You can google them and it is important to do so and do all your research before completely trusting just one post but I searched and bought the "Aroma Ace Diffuser" and you want to be careful when buying essential oils because some companies aren't as reputable and trustworthy as others and may claim their oils are 100% but actually are not and could be mixed with things or diluted already. These products are not regulated by FDA so essentially they could write whatever they want on the bottle but it is important to do your research and see other people's opinions and reviews on whatever company you choose to get your oils from before just trusting what the company is advertising. I personally have searched my health food stores locally and have done research on each company I came across and read many forums that believe that those companies' oils are "decent" but not nearly as potent or therapeutic as others.
Of course this isn't a huge deal for most people but people like us with a life threatening disease.. I don't want to waste my time buying something that is "decent" and may or may not work. I make sure I do my research and buy my oils from the company that I believe has the most potent and 100% pure essential oils for the best price I can find so that I know I gave it my best shot on whether the oils work or not and I'm not stuck wondering if they would have worked if I tried a "better" brand of essential oils.

TheSaltyOne
03-23-2014, 11:25 PM
You never know, mine seemed to work in just a few days but everyone is different. I would think 2 weeks time would have some sort of improvement. When I rub the oils on my skin I do not dilute with water but when I combine the oils in one bottle together and diffuse them in the diffuser I fill the rest of the bottle or vial with distilled water so that the oils last longer. Typically one vial with 10 drops each of 4 different oils and mixed with distilled water will last me about a week or so.
My particular oils diffuser has a timer of how long you want it to stay on and how long you with it to be off for plus a switch for the frequency or "strength" it diffuses at. I usually will diffuse oils for 10 min on and 10 min off for a 2 hour period with the strength set at less than half so that the oils will last me throughout the week. I do this every night and sometimes if I am feeling bad will do more though out the day when I am just sitting on the couch. I also put the diffuser on the coffee table and lean towards it when I hear it kick on so that I am breathing in all I can.

TheSaltyOne
03-23-2014, 11:33 PM
The only catch is you have to buy a $45 start up kit which has a few oils in it and advice on how to use oils. The discount is around 28% on most things. I too am the same, I have no intention of selling to others or making $$ from the oils. If friends or family want anything I'd always give them the discount price.
I was lucky enough to meet a lady who is seriously crazy about these oils and they have an online program called young living university where you can watch clips they have made on how to use these oils for every ailment under the sun!! They also have a wonderful Facebook page that has even more experts who are full of great advice- they are serious power sellers though which does get a bit tedious but it's a small price to pay for their great advice 
if you are keen to join as a distributor and join their team let me know (as with any selling scheme like this you have to join using their seller ID . Either way joining as a distributor with or without using them you will only have to pay the start up kit fee of $45 then you get the discount.
ps I'm in Australia so not sure if the $45 a flat rate all over. I'm pretty sure it is though.

I see. Thank you for all your info. I do like the network Young Living has but like you said it's almost a huge sales scheme and they seem to want to sell sell sell instead of help help help. But their oils have definitely worked for me so can't complain too much. I am going to try the alternative company I have decided on and see what I think but will definitely let you know if I decide to become a distributor if the Aromatics International ​doesn't seem as good. Thanks!

Helicopter Mom
03-25-2014, 11:52 AM
Thanks, all of you who have posted, with your essential oil results. Have any of you heard of, or tried the brand 'do-TERRA'? I am ready to give this a whirl, for my kid - and was all set to try the do-TERRA. Maybe I'll do a bit of research on the YL brand first, though. Again - THANKS for sharing.

aandrwest
03-25-2014, 04:50 PM
No worries & similarly if you do find Aromatics Int. as good and cheaper than YL please let me know :)

TheSaltyOne
03-25-2014, 09:58 PM
Yes I have heard of DoTerra. They're apparently a big rival of YL but at the same time I have read people branched away from YL and founded DoTerra. So possibly same quality just different companies. Either way I have read many reviews that DoTerra works great too. Both are expensive and both have good hype and testimonials for their health benefits. I think either one would work but I can only speak certainty for YL considering that's all I've tried.

laneyb
03-30-2014, 07:36 AM
Hi Thank you all for your messages. I finally bought a diffuser and found the oil. I couldn't find the 4 thieves oil but my husband did some research and found a study that was done using chinese cinnamon oil that eradicated pseudomonus and staph so I have started using that. I only started last night so fingers crossed it works for me too. The diffuser I am using has the following description so I hope it's a good one, Technology: ultrasonic, room size 25 sq.m can have up to 6 hours running time and it has timer too or I can choose it to alternate to come on for 5 or 10 minutes and go off for 10 minutes. I had it on a small table directly in front of me last night so the oil was was close to me and i should have been breathing in most of it!
I have a hospital check up on Friday and i'll ask my doctor to test my sputum samples and tell her what I have been doing. Might be too soon for any changes to sputum but we'll see. Should I be feeling anything if the oil is working to eradicate the pseudo? just curious to know how you felt when sputum was free of pseudo?

TheSaltyOne
03-31-2014, 04:56 AM
Hi Thank you all for your messages. I finally bought a diffuser and found the oil. I couldn't find the 4 thieves oil but my husband did some research and found a study that was done using chinese cinnamon oil that eradicated pseudomonus and staph so I have started using that. I only started last night so fingers crossed it works for me too. The diffuser I am using has the following description so I hope it's a good one, Technology: ultrasonic, room size 25 sq.m can have up to 6 hours running time and it has timer too or I can choose it to alternate to come on for 5 or 10 minutes and go off for 10 minutes. I had it on a small table directly in front of me last night so the oil was was close to me and i should have been breathing in most of it!
I have a hospital check up on Friday and i'll ask my doctor to test my sputum samples and tell her what I have been doing. Might be too soon for any changes to sputum but we'll see. Should I be feeling anything if the oil is working to eradicate the pseudo? just curious to know how you felt when sputum was free of pseudo?

Awesome. I have tried cinnamon before but only topically. I did not have it when I bought my diffuser. Your diffuser sounds identical to mine so ya I'd say it should work just fine. As far as feeling anything... i dont know. I was having fevers, chills, and my oxygen SAT was low (around 89% on 2 Liters of oxygen) for about 3 or 4 days before I started using the diffuser. I was just about to go to the hospital when I decided to give the diffuser a couple days to see if it changed anything and by day 3 I felt pretty darn good and didn't need oxygen anymore. Also, please note I did not have any sputum cultures done to show that the pseudo was gone, I simply had read that these oils killed pseudo and staph so when I was having an exacerbation I gave the diffuser a shot and felt tons better in a few days of diffusing. I have been to the clinic since and did cultures but have not heard back the results yet but they did not call to put me on antibiotics or anything so I guess thats a good sign. But my weight was up and my PFT fev1 stats were improved (not dramatically) so that was a good sign.
Another good sign is that my ENT doc said my sinuses were the best he has seen since he began seeing me quite a few years ago. I did not tell him about the oils, just smiled and said it was good to hear. (I have CF chronic sinusitis of course along with my CF and have had quite a few sinus cleanouts/surgeries due to it)

ALSO ​IF ANYONE ELSE TRIES THE ESSENTIAL OILS TREATMENTS PLEASE POST ON THIS THREAD WHAT YOUR RESULTS ARE AND WHAT ESSENTIAL OILS YOU USED SO THAT WE CAN HAVE MORE SUPPORT AND SPREAD THE WORD OF WHAT IS HELPING US.

TonyaH
03-31-2014, 06:06 AM
Can anyone on this thread share experiences with essential oils for the treatment of mycobacterium abscessus?

grammakaky
03-31-2014, 08:54 AM
Hi everyone, Im a grandmother to 2 girls with cf and I've been using essential oils for little over a year. We use a salt lamp with a built in diffuser for buring essential oils. This is the website we get ours from. The Munio oil is considered her theives oil. We are going to try the next step in rubbing the oil on feet at night, which some of the cf moms say they are starting to do. We will see how it goes. Here is the website I use. Came recommended from another cf mom.
http://www.bestpinksalt.com/

shellbell
03-31-2014, 09:04 AM
This is such great information and thank you for posting. There are so many natural therapies that I wish the medical community would study and endorse but unfortunately there is no money in it. I usually am hospitalized twice a year. I started taking a specific brand of Turmeric that I heard was the best and I have gone one year and one month without hospitalization. And I can breath easier with less tightness. I have read about Turmeric being good for anti inflammatory ad specifically for CF and now I am t true believer!

ymikhale
03-31-2014, 09:51 AM
This is such great information and thank you for posting. There are so many natural therapies that I wish the medical community would study and endorse but unfortunately there is no money in it. I usually am hospitalized twice a year. I started taking a specific brand of Turmeric that I heard was the best and I have gone one year and one month without hospitalization. And I can breath easier with less tightness. I have read about Turmeric being good for anti inflammatory ad specifically for CF and now I am t true believer!I remember seeing a post over here a few years ago by someone who was also using Tumeric for a while but stopped b/c of some article that found Tumerc could cause cancer in high doses. Not to scare you or anything but I would Google it just in case.

TheSaltyOne
03-31-2014, 09:00 PM
This is such great information and thank you for posting. There are so many natural therapies that I wish the medical community would study and endorse but unfortunately there is no money in it. I usually am hospitalized twice a year. I started taking a specific brand of Turmeric that I heard was the best and I have gone one year and one month without hospitalization. And I can breath easier with less tightness. I have read about Turmeric being good for anti inflammatory ad specifically for CF and now I am t true believer!

I have also heard good things bout Turmeric, specifically because of the ingredient "curcumin" in turmeric is suppose to be great for CF. Once I had a friend tell me they heard CF could be cured or controlled through curcumin treatment in India, and I have no clue about that but do believe that anything is possible and have read Curcumin studies on CF. I have tried taking both Curcumin and Turmeric but I do not think they were high quality products since they were just from a local health food store. shellbell what brand do you use? Also, how much do you take? Do you mind telling us your regimen so that we could see if we get the same results?
Anything to keep us out of the hospital and healthy helps! Ive heard good things about curcumin in Turmeric also, but hard to find a good pure quality product of it. I have also seen "curcumin essential oils". I plan on ordering some on my next batch of oils I order to see if it helps and has the same effects. Thanks for your posts!!!

laneyb
04-01-2014, 05:54 AM
Awesome. I have tried cinnamon before but only topically. I did not have it when I bought my diffuser. Your diffuser sounds identical to mine so ya I'd say it should work just fine. As far as feeling anything... i dont know. I was having fevers, chills, and my oxygen SAT was low (around 89% on 2 Liters of oxygen) for about 3 or 4 days before I started using the diffuser. I was just about to go to the hospital when I decided to give the diffuser a couple days to see if it changed anything and by day 3 I felt pretty darn good and didn't need oxygen anymore. Also, please note I did not have any sputum cultures done to show that the pseudo was gone, I simply had read that these oils killed pseudo and staph so when I was having an exacerbation I gave the diffuser a shot and felt tons better in a few days of diffusing. I have been to the clinic since and did cultures but have not heard back the results yet but they did not call to put me on antibiotics or anything so I guess thats a good sign. But my weight was up and my PFT fev1 stats were improved (not dramatically) so that was a good sign.
Another good sign is that my ENT doc said my sinuses were the best he has seen since he began seeing me quite a few years ago. I did not tell him about the oils, just smiled and said it was good to hear. (I have CF chronic sinusitis of course along with my CF and have had quite a few sinus cleanouts/surgeries due to it)

ALSO ​IF ANYONE ELSE TRIES THE ESSENTIAL OILS TREATMENTS PLEASE POST ON THIS THREAD WHAT YOUR RESULTS ARE AND WHAT ESSENTIAL OILS YOU USED SO THAT WE CAN HAVE MORE SUPPORT AND SPREAD THE WORD OF WHAT IS HELPING US.


I have been doing pretty good but feel like I have had a slight increase in my cough for a while. I am very thankful though as I haven't been sick for a long time even with putting my body through a lot over the last year! We have been doing IVF and started last year and just November past was out last attempt. I had an early miscarriage and it took it out of me! I was so tired after and it took me a while to feel back to myself. I got pregnant and had an increase in cough as I think most CF pregnant women do and I feel it lasted after the miscarriage. I put my health down to our move from Ireland to France. When we lived in Ireland I did IVs every 2nd year and now we are into our 4th year in France and I haven't done IVs in 4 years. My PFT's were slightly down at my last visit but i'm feeling good. As we want to try for baby again soon my CF doctor wants me to do a round of IVs as she feels it will build me up for pregnancy. If we weren't trying I don't think i'd do the IVs but because we are trying and I hope they do build me up i'll do them. I have only ever done IVs when I am sick so it's a bit strange for me to do them feeling good. I have been doing the oils now 3 nights and think I may notice a little difference and feel good but we'll see. I hope to have my sputum checked and be told it is pseudo free some time soon! I have appointment this week and i'll let my doctor know when I can do the IVs. I feel the oils are going to be a long term thing for sure and that it will improve my cultures which would be amazing then who knows I can possibly go for years and years without needing IVs.
This information is all so good to read and great for you and others to share things that have helped you. Keep well and keep us posted on how the oils are keeping you well. I will keep you posted too on how I get on and cultures and fingers crossed for improvement.

TheSaltyOne
04-02-2014, 02:07 AM
I have been doing pretty good but feel like I have had a slight increase in my cough for a while. I am very thankful though as I haven't been sick for a long time even with putting my body through a lot over the last year! We have been doing IVF and started last year and just November past was out last attempt. I had an early miscarriage and it took it out of me! I was so tired after and it took me a while to feel back to myself. I got pregnant and had an increase in cough as I think most CF pregnant women do and I feel it lasted after the miscarriage. I put my health down to our move from Ireland to France. When we lived in Ireland I did IVs every 2nd year and now we are into our 4th year in France and I haven't done IVs in 4 years. My PFT's were slightly down at my last visit but i'm feeling good. As we want to try for baby again soon my CF doctor wants me to do a round of IVs as she feels it will build me up for pregnancy. If we weren't trying I don't think i'd do the IVs but because we are trying and I hope they do build me up i'll do them. I have only ever done IVs when I am sick so it's a bit strange for me to do them feeling good. I have been doing the oils now 3 nights and think I may notice a little difference and feel good but we'll see. I hope to have my sputum checked and be told it is pseudo free some time soon! I have appointment this week and i'll let my doctor know when I can do the IVs. I feel the oils are going to be a long term thing for sure and that it will improve my cultures which would be amazing then who knows I can possibly go for years and years without needing IVs.
This information is all so good to read and great for you and others to share things that have helped you. Keep well and keep us posted on how the oils are keeping you well. I will keep you posted too on how I get on and cultures and fingers crossed for improvement.

I see, well good luck on your pregnancy. My hospital does the same as they encourage patients that are doing well and not getting sick all year to be admitted once or twice a year for a "tune up" where they just do the usual 10-14 day IV course. I would love if they offered me that cause that would me I had stayed out all year, although I would most likely turn it down cause I don't want to suppress my immune system or increase resistance any more than I have too.
You might try rubbing the oils on your feet morning and night as well (i rub 2 drops of each oil). I would imagine it could be hard to notice any major change for you since you have been doing well for the most part. It was easy for me to see a change cause I have started using the oils every time I have an exacerbation. I tried taking a week off this past week and of course now I am sick, so I started using the oils again yesterday and hopefully I won't end up having to be admitted. Good luck and keep us updated on your sputum results.

Helicopter Mom
04-02-2014, 05:49 PM
Thanks, again, all of you who have posted on this thread re: essential oils. I have ordered the diffuser recommended by TheSaltyOne, as well as a few oils specifically recommended for pulmonary / respiratory function. My son is just starting to come down with a dreadful cough (again - surprise, surprise) so this will be a great test. I'll keep you all posted :-)

Epona
04-04-2014, 07:55 PM
Hello all. I am going to write a more detailed post on my website soon, but I have been getting great results from nebulizing several oils over the last seven weeks. Just for context, I have a very heavy MRSA burden that responds to very little except vanco. I get chronic fevers and tons of mucus/coughing any time I'm not on antibiotics (except for now that I'm using essential oils). So this discovery of mine has been pretty miraculous, I must say.

I nebulized eucalyptus radiata essential oil (organic from Aura Cacia) for 5 weeks and it resulted in a 8% jump in my FEV1. I nebulized 2 drops of euca oil in 2 mL of saline twice a day. My spasmy morning cough disappeared, my night fevers disappeared, my mucus is significantly decreased, coughing is easier, energy is much better, lungs are less inflamed and irritated, less tickling, able to breath in deeply now, I can no longer hear crackling on my breath.

I took a break from eucalyptus to experiment with other oils. I tried pine oil (coughing and mucus increased but did not return to "normal") for a week but I declined so I went back to euca. I tried cinnamon leaf oil a few times but it's too irritating and hurts my throat a lot. Cinnamon leaf may have even made me short of breath and a little more irritated.

After a week and a half of these non-eucalyptus experiments I went back to nebulizing eucalyptus. For the last week I have been using a combo of one drop euca, one drop tea tree oil, one drop lemongrass. I got my FEV1 done again today (2.5 weeks later) and it is down 2% from last time. But I am not disappointed because I had taken a break from the euca which made me feel worse, and it took a good amount of time (about 4 weeks) for the euca to really make me feel great. But my lungs are clear and open and even more mucus-free than 3 weeks ago. So I feel I am on the right track. By the way, tea tree and euca are pretty chill compared to lemongrass which is pretty irritating but not as bad as cinnamon. I am still using lemongrass because I feel it is the strongest antibacterial oil of the 3.

I will continue experimenting with different oils to see which are most effective. I have been doing a lot of research, reading a lot of clinical data, and consulting with many herbalists and aromatherapists on this issue. As I said, I have much more info to share, but I will save that for my blog post. It will include references to the scientific research that I have come across (which is the basis for why I have chosen the oils I have). I will post a link when the article is finished.

JennyCoulon
04-05-2014, 09:24 PM
I am really wondering which oil(s) I should get for both of my boys. I haven't heard anyone type out which specific ones for respitory as well as how often to difuse them and for how long. I have the Thieves that I have rubbed on their feet a couple times but I haven't seen any results. I am in need of help with this. Thanks

TheSaltyOne
04-06-2014, 07:39 PM
Epona great post!!! Thank you for sharing and please keep us all posted. I will probably look into and try nebulizing Eucalyptus soon. Hopefully my results will be similar.

JennyCoulon read my first post on this thread and I list the specific oils I use and why as well as how often I diffuse each day.

Helicopter Mom
04-07-2014, 02:59 PM
Epona,
THANK YOU so much for this great information. I just started my son on essential oils 3 days ago (diffusing and topical). We have used mostly eucalyptus and melaluca, as well as a couple of proprietary blends. I have been trying to find some information on whether or not it's safe to nebulize the oils, and if so, which ones. Your post is a God send! Can you tell me: When you say you drop the oils into 2 ml of saline, is that the 7% hyper-tonic saline you're referring to? (the little vials that you dump into the nebulizer)?

I am sooooo happy to read this - and can't wait to have my son give it a try.

Epona
04-08-2014, 08:42 AM
Glad my post is of help! To HelicopterMom - I originally used hypertonic saline which was great for really inducing a nice productive cough when using eucalyptus together with it. But then I realized that I had a box of unused normal saline syringes (left over from my home-IVs in December) and I've been using normal saline for the last month instead of hypersal. Both are fine, but I'm happy with the normal saline right now because it makes things less intense.

To Jenny and the SaltyOne - I chose my oils specifically because they are helpful to the respiratory tract and are antimicrobial. Tea tree oil and eucalyptus are moderately antibacterial, but both are bronchodilating and soothing to the respiratory tract. They open me up and calm down any spasms I might have (and prevent any from developing). Lemongrass is one of the strongest against MRSA (my main bug) that I could find in the scientific literature, and it is pretty irritating but less so than other oils that are also strong against MRSA (cinnamon, thyme, etc.). In the last week of using lemongrass (in conjunction with TTO and euca) I have significantly less mucus, even when waking up. My cough is much reduced. It's really miraculous! I really do think that of the 3, the lemongrass in the most bactericidal. But the other two are important for the reasons I mentioned. Combos are good, and oils usually work synergistically against bacteria, making them more effective. That's what the studies have pointed out, at least, and I can feel it.

TheSaltyOne
04-09-2014, 07:59 AM
BE AWARE: So a few of us have shared our experiences with essential oils, others have asked questions, and overall this post has gotten a lot of views. All of it is very helpful and nice to see people working together. BUT please understand WE are talking about the OILS and how they are helping us and WE are or have loved ones with a LIFE THREATENING disease. So it really irritates me and i'm sure a lot of people when people just use our disease as an excuse to make money. Let me tell you about the email I have just received and how it is important to this thread on essential oils....

BACKGROUND: I posted on this forum my experience to help others and let them know what has benefitted me, in hopes that it will benefit you all too. I also posted pretty much my EXACT post on another site that I found was helpful when I was researching info and testimonials on all these oils. The site is "oil-testimonials.com", and basically a bunch of testimonials from people who have used essential oils and how they have helped them. Well I wanted to share as well since the posts on the site gave me more confidence in trying out essential oils. I ironically saw that in order to post you had to "register", no different than this forum, so I had and at the bottom of the registration it asks if I want to be a distributor for YOUNG LIVING. The site does not advertise Young Living essential oils company at all anywhere on their page except mentioning it in their "FAQ" tab. I found this interesting and kinda sneaky on behalf of Young Living. So what am I getting at?

THE EMAIL: Well if you do your research on essential oils you will see a lot of "distributors" for Young Living, Do-Terra, and others that are throwing out their sales pitches and trying to persuade people to join their sales community or buy oils from them. This is extremely annoying, I don't want to get something sold to me because you can hype up your product, I want a product that will help me with my health and is 100% quality! So after I registered and posted my experience it said I had to wait and they would review my submittance and post it when it's approved. Again annoying... why do you have to review my post about how I have benefitted my health.. but I thought well maybe other people have spammed or put cuss words everywhere or something, so I just accepted it and waited. I now have received my email that my post has been reviewed and accepted and that I can see it on their site. So of course I go to their site to see what it looks like and how many views it was getting, well ironically and disgustingly I notice they ALTERED my post! Now don't get me wrong.. they did not change the major parts and idea and how the oils have benefitted me, but they changed some of my wording as well deleted the bottom paragraph where I say that I have to admit "Young Living" oils have worked for me BUT I find them expensive and I am trying to find a cheaper alternative. I know this is not a big deal but just makes me shake my head. Can't anyone just be truthful???!!!!! I mean REALLY..

WHY I'M SHARING: I understand that Young Living is a company and therefore do not want any negative feedback publicly known but if anything it almost helped them as I prove I'm not a distributor for them and I list a con of them but a major Pro when I say they worked despite the price. So just be aware that when any of you are out searching for oils if you want to try this alternative "treatment" there will be people that push their company on you just because they want to sell and make a profit and not because they care about your health. But there will also be people who may work for the company and legitimately are just trying to help you with your health as well. The good and evil both exist. Also, not sure if anyone noticed but just after me and one other person were posting back and forth on page 1 or 2 there was a distributor that posted on here about how much they can save you and you should contact them and their oils are "therapeutic grade" blah blah (like a sales pitch) and it was ironically right after my previous post that said young living distributors just seem like they want to sell sell sell, well that post was shortly deleted but that got me fired up to. I can't believe we are out to help ourselves and others with CF treatments and they are trying to make a buck. So please do your research and try to find a company that you can trust for their quality and true motivation to sell you their essential oils. But as I said before this is my experience with Young Living so far but by golly their oils did seem to work for me and yet I'm still searching for a cheaper alternative due to their lack in customer service or care for their customers. ;)

P.S: anyone that reads this, if you are a distributor for YL or anyone else, please don't turn this into an argument and try to defend your company or anything else. Yes the Young Living oils worked for me, no I don't have total respect for them b/c of this, and no I don't wish to discuss with you your defenses for Young Living. I know a distributor for them that does not push sales on people at all as well. I was simply trying to share this experience so people know not to blindly believe and buy things for their health just because of a good sales pitch. Do your research because obviously some companies edit their "testimonials" for their advantage. Now lets keep sharing our experiences and work towards a defined regimen of oils that others can follow if they wish.

2roses
04-09-2014, 08:22 AM
Salty, Thank you so much for sharing the good and the bad here. But more so, thank you for your passion to help the cf community and find alternative treatments to augment traditional medicine. Please keep posting your EO experiences and being 'salt and light.'

Helicopter Mom
04-10-2014, 04:08 PM
I just wanted to give a quick update re: the essential oils we've been using on my son for the past several days. He did try nebulizing eucalyptus, along with hyper-saline, but it was too harsh for him. Made him cough too hard. So - I've just been diffusing a melaluca/eucalyptus blend at night, and rubbing those same oils on his chest and feet, morning and night. Also have him inhale the same oils in a hot, steamy shower. I also have him inhale what is called a 'sinus buster'. He really has trouble with sinus congestion, runny, runny nose, which aggravates the cough, and so on and so on. I'm sure most of you know what I mean. The sinus buster is:
3 drops each of melaluca, peppermint, lemon and oregano (I don't have the oregano so just did without). Place drops in a cup of hot water (not boiling). Wrap your hands around the cup and place your face down into the steam, so that no air can escape. Inhale deeply. Do this 4 or 5 times. REALLY clears him out and opens him up.
Overall, he tells me he feels better - not so much tightness in his chest. He has his formal PFT's coming up in a couple of weeks, so I'm hopeful for some better numbers. Will keep you all posted. Thanks again, all of you who take the time to share :-)

TheSaltyOne
04-12-2014, 01:21 PM
Good news and disappointing news...
On most testimonials and articles I have read they say since you are kinda treating EO like antibiotics and diffusing them when you feel sick (or at least I am), it can be a good idea to take a break from them every so often. So after 2 weeks of using them I stopped for 5 days and of course my family member got a cold during those 5 days, but I didn't show any signs of it until a week later. Anyway, I went to clinic during the end of those 5 days and they said my sinuses look better than they ever have and they took sputum samples. I have recently got the results back that out of my usual bugs (pseudomonas, MRSA, and Achromobacter) only pseudomonas was present.
I find this pretty exciting that only 1/3 of my bacteria were there and truly believe that the oils took care of the other 2. I'm just disappointed that I didn't plan better and stayed diffusing the Essential Oils until after my clinic. Anyway, that was my update for now.

Tisha
04-13-2014, 10:59 AM
Awesome information!
My experience with oils is that my totally resistant pseudomonas, after doing vapors (plain boiling 1 liter water and adding a few drops of oil, breathing under a towel) with lavender oil, the pseudomonas became sensitive to 2-3 antibiotics. :)
I will try the combination you used.
I have been purchasing from Butterfly Expressions (cheapest at www.butterflyexpress.biz) - they also have Young Living comparable blends.
I will see to get a diffusor too.
Thank you!

LittleLab4CF
04-14-2014, 02:32 AM
I have discussed using a medical vaporizer like the digital temperature controlled Vapir No2. Sold as a dry chamber vaporizer, it heats materials from room temperature up to 400°F in one degree increments. Vaporizing essential oils which by definition are VOCs is far preferable to burning essential oils.

Salty, welcome and thanks for the restraint and caution included in your success story. With MDR infections largely untreatable by the best conventional wisdom in medicine, I am open to almost anything. There's a huge grain of salt that goes along with simple cures for any serious medical condition and hucksters abound when we get desperate. I seethe over expensive gold shots, colloidal silver, (why not colloidal copper, it's better and cheap) and anything expensive and with nothing more than testimonials. A friend's family went broke buying into some electronic cure for his MS when I was a kid. It's not legal to shoot this human vermin on sight but it should be. The real harm done by medical chicanery like this is eliminating or delaying proper treatment.

With biofilms, MDR bugs and biofilm producing MDR bugs, the field is wide open to find agents that poison or breakdown biofilms. Alginate type biofilms are true slimes that essential oils might penetrate. CF isn't fodder for Outrageous Acts of Science, a deep breath of cinnamon powder isn't a smart idea. I have done enough damage to myself in the interest of science and medicine and I usually know what I'm doing.

As part of a larger quest, I am testing stuff like essential oils, in the fight against biofilm bugs, Steno and P.a. and such because of so many requests. Soon, CF will be stopped with genetic drugs and then we will be left with incurable infections.

LL

shellbell
04-15-2014, 06:04 AM
I have also heard good things bout Turmeric, specifically because of the ingredient "curcumin" in turmeric is suppose to be great for CF. Once I had a friend tell me they heard CF could be cured or controlled through curcumin treatment in India, and I have no clue about that but do believe that anything is possible and have read Curcumin studies on CF. I have tried taking both Curcumin and Turmeric but I do not think they were high quality products since they were just from a local health food store. shellbell what brand do you use? Also, how much do you take? Do you mind telling us your regimen so that we could see if we get the same results?
Anything to keep us out of the hospital and healthy helps! Ive heard good things about curcumin in Turmeric also, but hard to find a good pure quality product of it. I have also seen "curcumin essential oils". I plan on ordering some on my next batch of oils I order to see if it helps and has the same effects. Thanks for your posts!!!


I take a brand called Ocean Avenue. I became familiar with them through skin care because I am a skin care formulator. I formulate skin care for this company but they happen to have a brilliant scientist on staff who works for University of British Columbia. He studies biofilms, cell vaibility, cell penetration etc so he has studies on the internal supplements they sell. I have seen all the studies on their Wav Empower which is the Turmeric and it showed the reason the extraction of their circuminoid and the processing makes it available to cells. I started 2 pills twice a day back in July 2-13. I did not need a tune up until two weeks ago and then it was more to be proactive. My whole family takes this because it is such a great anti inflammatory as well. Studies on it for Alzheimer, Cancer etc. I order through a gal in Missouri and I am happy to give you her info if you want or if you call the company they will help you I am sure. I know there are many brands of this product but the two I have found to be most effective in their science to support their claims is either Ocean Avenue or Andrew Lessman's. I do not sell for either company. Just my opinion and I do hope it helps:)

Epona
04-21-2014, 09:50 AM
Hey all. I just finished my article on my experiences inhaling essential oils and the science behind how they work. It's been revolutionary for me. Enjoy, and please let me know if you have any questions:

http://cfnaturalhealth.weebly.com/1/post/2014/04/inhaling-essential-oils.html

Helicopter Mom
04-22-2014, 12:28 PM
Epona,
THANK YOU so much for taking the time to research, experiment and then report with such clear, concise language. I am so thankful, and so hopeful. One quick question for you, (or for anyone else who might know). You mentioned that you don't use the hypersaline, but rather regular saline, that you had left over in some syringes. Where does one buy regular saline? is it something that can be purchased over the counter at any pharmacy? I don't recall ever seeing it, but have not really been looking for it.

I had my son try nebulizing eucalyptus with hypersaline, but it seemed to be too harsh for him. Back to the drawing board, maybe with one of the blended oils.

Anyway - THANK YOU again!

Epona
04-22-2014, 07:52 PM
In terms of saline syringes, I'm pretty sure it's by rx only. Actually, my box says so. But next time you're at the pharmacy, ask the pharmacist how to get ahold of normal saline. It doesn't make sense that it would be by rx (salt water is probably the most harmless thing I think of), but things are not always logical. If your doc is open minded you could try to convince her to write you a rx.

In terms of the eucalyptus, yes it can be irritating at first, but after a few days the body gets used to it and doesn't have the same reaction. If you wanted to start by steaming euca for the first few days and then try it in the nebulizer again later (diluted in a lot of hypersal/saline, like 1 drop euca to 4 mL hypersal) that might help. Or you can mix it with more mild oils. I was mixing the more irritating oils (lemongrass) with pine and it seems to make it more tolerable. Something like lavender is probably very gentle (though I haven't used it so I can't say for sure).

Helicopter Mom
04-22-2014, 10:31 PM
Epona,
Thanks again. I appreciate your response. Sorry to appear so dense, but I looked online for saline and found several different items (of course). Would something like this be what I'm after:
Product Description :
Saline,Package Type Bottle,Size 500mL,Formula 0.9 Percent Saline Solution

Thanks!

bookperson
04-23-2014, 11:29 AM
A little tangential, but I bought a cold essential oil diffuser from Whole Foods. In the instructions it says I should only use tap water as distilled or sterile will not work effectively. Do you think it is safe to diffuse tap water? As in, is there a risk of bacterial contamination with tap water?

Epona
04-23-2014, 05:31 PM
Yup that sounds fine. Make sure it's sterile. Getting several smaller bottles of it would be better than getting a big bottle of it, just to reduce risk of airborne pathogen contamination. That's why syringes are so great, they come in 10 mL packages. But I assume if you are careful, you probably won't have a problem with contamination.

TheSaltyOne
05-07-2014, 01:42 AM
I would not suggest using tap water. All tap water is different depending on what area you live in and you know that distilled water or sterile water would be completely clean but to each their own.

Update: I have tried a company called "Aromatics International" for my essential oils and I have been feeling great and getting the same results as I did before with the Young Living Oils from what I can tell. I chose this company because I have read good things about them. I was choosing between Aromatics International and Floracopeia. I added up Young Living, Aromatics International, and Floracopeia. Floracopeia was the cheapest and Young Living was the most expensive. Young Living ended up being a little over twice as much as Aromatics International after adding up the total cost for about 8 oils.
It has only been a week but once I started using them I began to feel a little better after having a cold recently. I will post again if anything changes or I get sick in the next week or so which would let me assume they don't work as well as Young Living, but so far so good. The company includes suggestions with each oil on what they treat and how they would recommend treating yourself as well as test results for the quality of each oil. They seem very legitimate and good quality. Also, the company is very nice and included a personal note thanking me as a customer (it's the little things lol).

bookperson
05-08-2014, 01:45 PM
Thanks for the advice about the water. My diffuser says specifically not to use distilled water. Does anyone know where I can get (or how to make) sterile water? Also, has anyone used PlantLife EOs? I feel like EOs might be my big ticket out of the cycle of recurrent monthly pseudo/fungus flare-ups but I want to make sure I do it right. Sorry for all the questions!

Helicopter Mom
05-08-2014, 04:41 PM
Hello all. I just wanted to give a quick update on how things have been going for my son (17 years old) since we started using the oils about a month ago. We diffuse either 'Breathe' (which is a proprietary blend of eucalyptus, melaluca, peppermint and a couple others) or 'On Guard' which is another proprietary blend that is more antibacterial in nature. I alterate those two, one week at a time. I set the diffuser to run all night (5 minutes on / 20 minutes off). IN addition to diffusing, I rub either 'Breathe' or 'On Guard' on his feet and chest at night. In the morning, he does a 'sinus buster' which is 3 drops each of melaluca, lemon and peppermint in a large cup of hot (not boiling) water. He just cups his hands around the mug and inhales the steam. This has worked WONDERS with his congestion and constantly runny nose. He also drops those same oils onto the floor of his shower at night and inhales them as he showers. He is feeling SO much better than he was before he started using them. We have formal PFT's coming up in a couple of weeks, so I'm very curious to see how he blows. All in all, VERY happy with the results so far.
Thanks to all of you for posting.

Epona
05-10-2014, 07:30 PM
What a great idea to drop EOs on the floor of the shower!!! I'm gonna try that with the ones that are too irritating to nebulize, like cinnamon or lemongrass (though I do neb LG in small quantities).

Helicopter Mom
06-29-2014, 12:50 PM
Hello all.
Another update regarding essential oils. I have been having him diffuse EVERY night (either "Breathe" or "On Guard" -one is a proprietary blend of eucalyptus/melaluca the other is an anti-bacterial). In addition, he will inhale the oils in a cup of steaming water and / or rub on his feet every night. He WAS nebulizing Lemongrass (1 drop with saline) AND melaluca/eucalyptus (1 drop of each with saline). Our CF doc told us NOT to neb the oils. Said it could be dangerous (due to buildup in the lungs) but he encouraged us to continue diffusing, inhaling, rubbing, etc. His formal PFT's (done just last Wednesday) were the best they've ever been, by quite a bit. So -overall I am very encouraged and happy with the results. We will keep on keeping on. I am also looking into some health supplements that are meant to balance the body's PH balance back to its normal, healthy level. Will keep you all posted on that, as well!

cynsleigh
08-01-2014, 08:01 AM
Hey guys newbe here. I can't spend much money but I have to try every and anything to help my daughter. We have been told she has a "form" of cystic fibrosis but not the full blown kind. No one can seem to give her any meds that help. The only thing that does seem to help her is prednisone but we all know she can't be on that forever. Because she also has spina bifida and one kidney. I would love to try this for her but I just can't afford a lot. So does anyone know of a decent diffusser that would work ok for a bit less than $150? I am so losing hope. she is so sick always and is basically bed ridden. I can't seem to get any docs to help her. She's seem 12 different specialist. Most of them just shrug their shoulders because her case is so rare. But in the meantime until someone comes a long that can help i want to try and help her. Thanks guys

Epona
09-08-2014, 02:47 PM
This is a very strange thing to hear. Have you seen a CF specialist yet? You either have CF or you don't. It's genetic. What do you mean by "it's not full-blown"? Does that mean that her sweat tests come out normal or borderline? There was another person on this forum who had CF-like symptoms, which I believe was probably some kind of disease of the chloride efflux channel meant to accomplish something similar to CF's preventative effect on dysentery.

What are her symptoms? How old is she? What meds is she on now?

mom101
09-09-2014, 10:13 AM
Hi I was just curious on now being Sept. 2014 how have the oils helped you so far since you started using them? My daughter has CF and seems now to become ill all the time with infections.

mom101
09-09-2014, 10:15 AM
Oh sorry . I guess my question was for TheSaltyOne.

rmotion
09-09-2014, 10:21 AM
I remember seeing a post over here a few years ago by someone who was also using Tumeric for a while but stopped b/c of some article that found Tumerc could cause cancer in high doses. Not to scare you or anything but I would Google it just in case.

http://www.potentiate.info/

SOme have added curcumin and soy genistien

Mark_s83
09-09-2014, 08:14 PM
It has been about six months since your original post in which you claimed benefit from the essential oils. I am curious, are still feeling good and do you still recommend the oils as highly as you did in that post?

TheSaltyOne
10-01-2014, 10:06 PM
Hey Guys!!! Sorry for the absence, I still fully back up the oils. I use them everyday and have great news.
My FEV1 as of 9-12-14 was 1.77 Liters which is 44% according to the system my clinic uses. If you guys read back on my post I was at 26% before back in February. I have also gained 35 Lbs!!!! They only down side I have with oils is if I do not use them for a week or so I start to feel ill and then once I start back up and stay consistent I am as good as new. It really is amazing to be honest and believe me we are still amazed. My clinic kinda just says "whatever you are doing, keep on doing it" and I tell them about the oils but they don't get too excited. Using them everyday isn't bad of course because that's what we do now with our treatments but geez I am tired of having to do treatments all the time. If you guys want see and support my progress I made an instagram account especially for my CF health tracking and now working out. It is called "DefyToBreathe". Of course I post my essential oils on there as well. So now you can go look and see I'm real and I really do what I have been saying lol.

Another great thing to share with you guys is that I started to learn app development back in March and now I have released my first app for Cystic Fibrosis for the iPhone!!!! You can see more about it if you go into the "adults" category of this site but it is called "My Fight Against Cystic Fibrosis" and it is pretty great. It was just released as of 10-1-14 and is getting a lot of praise so far. I would love your guys' support on it and of course I have included essential oils as a treatment option inside the app. It has so many features and only more to come. I designed it, developed it, and programmed it myself, so it is a lot more of a "friendly" feel and it has my direct email inside the app for anyone to provide feedback or make suggestions!
Please check it out and let me know what you think. Thank you guys for continuing this thread and helping others out too! This exact forum inspired me to create the app and I will further create a forum inside the app where all patients and contact each other (not necessarily using their real name) and be able to share their stories and experiences. It's really a great idea with a lot of potential. Help me make it happen guys!!! Thanks and Woooooo Essential Oils!!!!

TheSaltyOne
10-01-2014, 10:12 PM
Sorry I forgot to include you can check out the app at: https://itunes.apple.com/us/app/my-fight-against-cystic-fibrosis/id918730808?mt=8

or the facebook support page is: www.facebook.com/MyFightAgainstCF

DebA
10-09-2014, 02:21 PM
TheSaltyOne, Thanks for sharing your wonderful information and honest experience with EO companies. My adult daughter with CF is struggling with chronic antibiotic-resistant, as well as micro bacterial infections, so needless to say I'm researching essential oils like crazy. I sent her some DoTerra oils to try. Not sure if they're helping, but praying so!

ps. I'm new to the blog. Intending to give your post a "thumbs up", I think it posted a "thumbs down" (a little computer challenged here!!:p). Anyway, here's a BIG thumbs up for your honest advice!! :D

TheSaltyOne
10-09-2014, 06:09 PM
Awesome. I'm assuming you've read my "story" on the original post but if you ever need more advice on what I use, I don't mind emailing you all my notes on essential oils and CF. They've been working wonders!

kristenj
10-12-2014, 07:59 PM
Hi Salty One! First of all just want to thank you so much for sharing your experience!!!! I've been using do terra oils for about a year but only topically. I also have an Aroma Ace and a Whisper diffuser. I haven't gotten enough nerve up to try diffusing yet because I have lung bleeds from time to time. Have you had any lung bleeds before, during, or after you've used the oils? Do you have any thoughts on this? The bleeds freak me out for sure and I'm nervous about breathing in something that may irritate my lungs even more. Basically, I just need to suck it up and try!!! I know one thing, I've been using On Guard on the bottom of my feet each morning (similar to Thieves) and I haven't gotten a cold in over a year. That being said, I've still had some fluctuations in my lung functions and had to do antibiotics here and there...but no yucky colds or viruses:)! Thanks again for all of your sharing! I'll be glad when you get your app for android! Take care!!!

TheSaltyOne
10-13-2014, 02:31 AM
kristenj Hi, yes I have had lung bleeds but never from diffusing. My lung bleeds were from nebulizing hypertonic saline twice a day. I now only nebulize it once a day and have never had the problem again. Of course it may be different for you, but with me I have never coughed or felt tight or anything of that nature from diffusing the oils. It doesn't have an effect anywhere similar to something like hypertonic which is intended to make you cough.

The app for android is a big request lol. I'm looking into it, but just received an email saying that if I were to hire out to convert the app to Android the starting cost would be $70,000. So considering that, I'm trying to do it a different way without actually having to learn programming for android. It took me 4 months to learn iphone and that was doing it every day for at least 4 hours. So.. I will keep you updated on the Android availability. Fingers crossed :)

kristenj
10-13-2014, 11:50 AM
Thanks! I'm excited to try now. I tolerated HS for years but it has really been too irritating for me lately. I cut down to 1/2 a vial of 3% 2× a day and that seems to be okay. I'm on Flovent too which has made me bleed before also. Anyway, quick question on your Thieves oil... What oils are in it? I'm curious how similar it is to my On Guard. Also, what is R.C. oil? As far as android goes, I am going to pray that someone or some company or CF related organization would SPONSOR YOU TO MAKE IT HAPPEN:)!!!

kristenj
10-13-2014, 01:51 PM
One more quick question, do you run your Ace all night...maybe I missed that detail in a previous post.

TheSaltyOne
10-13-2014, 06:07 PM
"Thieves Oil" and "RC" is the only oils that I buy from Young Living, simply because I haven't found any other company that offers "Thieves" oil, but once I run out I will probably make my own using the same ingredients. From their site it says the blend includes:

Clove† (Syzygium aromaticum), lemon† (Citrus limon), cinnamon† (Cinnamomum verum), Eucalyptus radiata† and rosemary† (Rosmarinus officinalis CT 1,8 cineol).

To be honest.. I haven't noticed any "wonders" from thieves but the person that teached me about the oils swears by it. R.C oil is suppose to be great for airways and especially sinuses. Includes a lot of the different Eucalyptus oils. The ingredients are:

Eucalyptus globulus leaf oil, myrtus communis oil, pinus sylvestris (pine) leaf oil, origanum majorana (marjoram) leaf oil, eucalyptus radiata leaf oil, eucalyptus citriodora leaf oil, lavandula angustifolia (lavender) oil, cupressus sempervirens oil, tsuga canadensis leaf oil, and mentha piperita (peppermint) oil.

Thank you so much for your support. I really hope I can get it for android to. I noticed my old android phone is broken when I was trying to test it out today. So no hope there as well. I'll keep ya updated though!

TheSaltyOne
10-13-2014, 06:09 PM
kristenj and of course i know you are waiting for the android version but if you like it enough please spread the word as much as you can so that drug companies, etc, can see how desired it is to sponsor it.

Also, yes I have ran my Ace diffuser all night but only when I'm really feeling bad. I usually will run it 5 min. on and 15 min. off if I run it all night. I don't necessarily believe it does that much while you are sleeping because you toss and turn and what not, but when I'm really feeling bad I will do that. It seems like it might work but I really think the most beneficial is when you can lean into the diffuser whenever it is on.

ladybird
10-14-2014, 06:21 PM
I just got my first essential oil from Young Living - Eucalyptus, and am nebulizing 5 drops in 15 ml of sterile water. (I got my doc to prescribe me the sterile water for sinus rinses.) I think nebulizing may work better than diffusing as it presumably creates smaller droplets? Plus this way, I don't have to buy a diffuser - the oils are expensive enough - and I know it is going directly into my lungs. Does anyone else have experience with nebulizing them?

I did some research on essential oils and have decided on following the recommendation for 'pulmonary fibrosis' from Dr. Scott A. Johnson's book, 'Surviving When Modern Medicine Fails". This was the closest condition to CF in the book.

He recommends:
Oral: 2 x capsules filled with 15 ml of orange oil 3 x a day;
Inhalation: 15 drops of eucalyptus and 5 drops each of frankincense, peppermint and lemon in a boiling pot of water with towel over head for inhalation 1 to 2 times a day;
Topical: mix 5 drops each of frankincense and eucalyptus and 2 drops wintergreen with 1 ounce of vegetable oil and apply to the back and chest twice daily.

I decided to introduce the oils one at a time, adding a new one after a couple of days so I could get a sense of what is working. I also read on this forum of another CFer who had success with eucalyptus so I am hopeful.

Will post update soon.

kristenj
10-19-2014, 09:49 AM
Hey everyone, we'll I've started my diffusing oils experiment! So far I've only been diffusing eucalyptus (15 drops of oil with 2/3 bottle of distilled h20, 5 minutes on, 15 minutes off in the Aroma Ace Diffuser). Has anyone noticed irritation at first? It's only been one night so I want to give the oils a chance to work but so far my lungs feel kinda cruddy and irritated with mild streaking (my lungs have a tendency to streak anyway:( ). Hoping with a few more nights I will notice a difference!!! I'd love your thoughts!

TheSaltyOne
10-20-2014, 12:53 AM
kristenj I've not diffused oils for about a week then when I start back up I will usually cough for the first 15 min or so. I have never had streaking though. Also if you are only going to give one oil a try or be conservative with them to start out with Eucalyptus is good, but definitely try LemonGrass if you can. I've met people with that never knew about diffusing the oils but still know about putting lemongrass on the bottom of their shower tub. So if you are looking for a quick result I believe eucalyptus might open you up more and it is considered an "expectorant" but I know lemongrass is suppose to be the best for killing the bacteria. Keep us updated on how well it works for you.

kristenj
10-20-2014, 04:15 PM
Thanks Saltyone! I'm trying not to get discouraged. Seems every little thing makes my lungs bleed:(. I was kind of afraid to try lemongrass because I thought I remembered you saying it was more irritating....? As far as the eucalyptus goes, I actually feel more congested and tight chest than before. Boo. It's only been two nights and I know sometimes oils detox you as well. I'm not sure how long I should try...maybe a week?

Mark_s83
10-20-2014, 08:12 PM
Has anyone tried diffusing with a nebulizer or the Pari unit for dispensing Cayston?

TheSaltyOne
10-20-2014, 11:34 PM
kristenj when nebulizing it is more irritating. I tried nebulizing the oils one at a time. In that case Eucalyptus was the most soothing and lemongrass was unbearable to inhale cause of all the coughing. I now only diffuse the oils and rub them on topically. But when I first started all this I was hesitant and doubtful that the oils would work so I only bought lemongrass, frankincense, and oregano. The oregano I would rub on my feet and didn't notice much difference, but when I start to rub on the lemongrass and frankincense I started to notice a difference and a major difference when I started diffusing the two. So my point was that if you were to only try a couple oils to see the effect they have on you or to build your confidence that they work I would highly suggest trying lemongrass first and frankincense if possible.

That is strange that you feel tighter after diffusing the eucalyptus though. I hope that you have Eucalyptus Radiata. There are many different kinds of eucalyptus but radiata is suppose to be the best for respiratory. Secondly eucalyptus globulus has gotten some good results. I mainly only use eucalyptus radiata in my blends and sinus rinses since I stopped the nebulizing. I have heard, like you said, that in some cases you will feel tighter and cough more at the beginning just because it's breaking everything up, but I did not experience that when I began diffusing. But overall ya I would give it 2-3 weeks of consistent use of whatever oils you choose to use before you make a final judgement on how well they work for you.

Mark_s83 I have not "diffused" with a nebulizer as in holding it slightly away from my face but I have tried nebulizing the oils in a pari neb and holding it my mouth. It was a bad experience except for eucalyptus radiata oil. When I used eucalyptus (2 drops) with 2 ml of saline it was soothing but after 2 weeks I did not notice any improvements in how I was actually feeling.

LittleLab4CF
10-21-2014, 12:37 AM
Mark_s83, Essential oils by definition are Volatile Organic Compounds or VOC's both terms are referring to the essence sensed by smell not essential as in everything necessary included. Lavender oils range from essential oils sold to perfumeries to heavy plant oils best suited for animal feed.

Nebulizing a light essential oil should be possible although I can't recommend it or recommend against it if MRSA, P.a. or steno or such is the problem. Whatever you decide to try nebulizing it should be an oil that you're not the least sensitive to. Use a dedicated nebulizer piece because it may not be usable for anything water based once oils have been atomized. Try one or two breaths and take a long break to determine if an allergic reaction is going to occur. Keep an EpiPen handy and once you're satisfied that your air ways aren't going to swell closed, continue nebulizing 2 to 4 cc of a chosen essential oil.

I have worked with hundreds of essential oils and most will evaporate instantaneously when droppered onto a hot cup of water. In other words you warm the oil in a brandy snifter partially filled with hot water or over a flame and inhale the vapors. Some essential oils are destroyed at their boiling point or below and a nebulizer will atomize most essential oils so you have choices.

Try nebing one essential oil long enough to know what it does before trying another. Thieves oil combinations might be a good first choice. I believe in keeping my doctor in the loop. It might surprise most new wave medical enthusiasts just how many doctors are open to alternative medical treatments but keep quiet until the patient brings it up.

Be willing to accept or reject any new therapy once you have given it a fair try.

I hope this works, good luck,

LL

humphrey711
10-21-2014, 09:24 AM
Could these oils be used to prevent infection of psuedonomas or MRSA? My daughter is 7 and has never cultured either but I will do what I can to prevent it. She did have her first hospital admission last year for a week and was on IV antibiotics. She is doing well so far this year but we will try almost anything to make sure she stays that way.

Thanks for sharing this information!

kristenj
10-21-2014, 09:57 AM
Hi Saltyone! Thanks for the encouragement! I haven't nebulized the oils because I don't think my lungs could handle it. I do have eucalyptus radiata. I started with that one because I thougot it might be the least irritating. Good news is that last night was night #3 and this morning my streaking was less, my lungs felt more open than yesterday and I am clearing out good. So onward with the experiments:)! I think I will stick with eucalyptus for a bit since my lungs are SO sensitive and then move onto the lemongrass and frank, both of which a my favorite oils! Thanks for all the advice! Hope you are doing well!!!

Mark_s83
10-22-2014, 08:57 PM
Has anyone tried diffusing with a nebulizer or ultrasonic unit used for Cayston?

Mark_s83
11-01-2014, 07:54 PM
thanks! Still searching before trying anything.

kristenj
11-02-2014, 11:29 AM
Mark, My CF doctors did not recommend nebulized the oils directly...I have heard from others that they can be more irritating that way. I've been diffusing in an Aroma Ace diffuser. Not sure what other people have experienced with this. My lungs are ultra sensitive so I was afraid to nebulize anyway.

Mark_s83
11-07-2014, 04:03 AM
Thanks for your advice LittleLab4CF. I tried oregano oil, one drop, in a cup of hot water. Burned my nose and slightly irritated my lungs, but seems to have opened me up a little. Don't have any other oils at present. Do you have a suggestion for brands?

Wldhrtd1
11-09-2014, 09:59 AM
I have an 18 y.o son.. At his last visit at clinic, his cultures grew sensitive staf and pseudomonas... as usual. His last 7 months PFT's were 85, 94 and back to 85.. He was part of the Vertex drug study out of MGH in Boston.. He blew 94 while IN the study?! Hmmm, coincidence??Anyway.. I have been reading and rereading this thread and he is up for trying the oregano essential oil. He did mention it to his doc so he knows we're going to try it.. Essential oils straight are not great for your skin as they can burn so we're using a carrier oil or adding it to a cream. Can wait to see the next culture!!! Thanks!!

ladybird
12-09-2014, 06:30 PM
Cassia (cinnamon), Red Thyme and Peru Balsam essential oils are the most effective at killing P. Aeruginosa biofilms, in that order, with Cassia being about 5 times more effective than the next most effective, Red Thyme.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346404/
Selected Antimicrobial Essential Oils Eradicate Pseudomonas spp. And Staphylococcus aureus Biofilms
Nicole L. Kavanaugh (http://www.ncbi.nlm.nih.gov/pubmed/?term=Kavanaugh%20NL%5Bauth%5D) and Katharina Ribbeck (http://www.ncbi.nlm.nih.gov/pubmed/?term=Ribbeck%20K%5Bauth%5D)file:///C:\Users\Ingrid\AppData\Local\Temp\msohtmlclip1\01 \clip_image001.gif


See also http://www.crohnsforum.com/showthread.php?t=38132 for info on how cold-pressed orange oil is effective against TB and MAC

In vitro effects of citrus oils against Mycobacterium tuberculosis and non-tuberculous Mycobacteria of clinical importance

Philip G. Crandall a , Steven C. Ricke a , Corliss A. O’Bryan a & Nicole M. Parrish

Center for Food Safety and Department of Food Science, University of Arkansas, Fayetteville, Arkansas, USA

Division of Medical Microbiology, Johns Hopkins University, Baltimore, Maryland, USA

senia31
12-30-2014, 03:56 AM
Hi,thank you for the information.I just ordered a diffuser and I'm going to try YL essential oils for my son.could you please tell how do you mix Thieves,how many drops do you use every time with the diffuser and when you rub.A few days ago we received my son's throat culture and unfortunately he has pseudo(for the first time),I'm very hopeful that the oil will help him eradicate it.thank you:)

TheSaltyOne
01-29-2015, 08:40 PM
senia31 - I'm sure you have the oils by now but you do not have to mix thieves. It comes as a blend (already mixed). I rub 2 drops of each oil I want to use on the bottoms of my feet morning and night. Then I also will make my own blend (I usually use 12-15 drops of each oil that I want and mix them into one vial) using around 6 different oils and I diffuse this for one hour 2 times a day. It has worked wonders!

CF mom of 2
01-30-2015, 09:51 AM
SaltyOne- thanks for the updates. If you don't mind, I'm curious how old you are and if you're on oxygen at this time. Also curious what 6 different oils you combine and diffuse. My son (38) has started diffusing the Breathe blend over the last 2 weeks and has seen some improvement. Now would like to try some other EO's to see if that would also help. I really appreciate your sharing your experience with all of us. Thanks so much.

grammakaky
01-30-2015, 11:48 AM
My two granddaughters have cf and we have been diffusing for acouple of years now. We use a Himalayan salt lamp with a built in diffuser. She also sells the different oils. My granddaughters are stable (both DDf508). We burn at night while they are sleeping and it is also a nightlite for their room. Here is the webiste we use. http://www.bestpinksalt.com. She is very easy to work with.

mkpr13
01-31-2015, 11:31 AM
I used oregano oil on my son's feet (per the suggestion of his nutritionist) for digestive problems when he was younger. It worked great.

Recently, I started using the essential oil, lavender. I might try the lemongrass too. I found the lavender and lemongrass at Aura Cacia. I have no vested interested in them but they seem reputable and they are much less expensive than DoTerra and Young Living. You can buy a very small quantity (0.25 oz) from them so you can try it before getting the larger quantity. You can find their products on their website or on Amazon.

If anyone has tried Aura Cacia and found it is not as good as the more expensive product, let me know and I will not buy from them again.

Best wishes.
Melissa

kristenj
01-31-2015, 11:46 AM
Hi Saltyone or anyone else who's come across this,
I've been diffusing for a few months now, mostly breathe, eucalyptus, melaleuca, and on guard. I am starting a round of Cayston and was wondering if you are continuing to diffuse even while on inhaled antibiotics. I wasn't sure if the oils react with the Cayston in any way. I usually diffuse at night while I'm sleeping. Thanks for your opinions and input!!!

TheSaltyOne
02-11-2015, 05:52 AM
No problem at all. Here to help!

TheSaltyOne
02-11-2015, 06:04 AM
The 6 oils I usually use are Lemongrass, Cinnamon Bark, Frankinsence, Peppermint, Eucalyptus, and Tea Tree.
(I'll sometimes add oregano, Mrytle, or Lavendar)

I agree that Young Living is ridiculously expensive. That's who I originally used. After lots of research I have found that Aura Cacia is a decent brand but more of like a "maintenance" quality. My favorite brand to order from for price and quality, and they are all I use now, is Aeromatics International. Another brand I had as backup was Floracopeia but they are more expensive than Aero, but less than YL. Aeromatics ended up being about 1/3 the cost of Young Living for the same oils. So I've been using them for 8 months now.

I did use oils while I was on cayston and tobi and did not notice any particular reaction. I know this sounds crazy but I haven't been on inhaled antibiotics, nor IV nor oral antibiotics, except for Azithromycin, for about 6 months. Simply because I gained 35 lbs and lung function went up 18% when I started using essential oils so i said I would rather save the antibiotics for when I really need them rather than building up resistance to them by using them all the time. And luckily I haven't been sick yet except for right after I had sinus surgery a few months ago. I DO NOT RECOMMEND stopping your inhaled antibiotics, I'm just sharing with you my experience and reasoning.

ToriMom
04-25-2015, 09:48 PM
Hello everyone!
I do not know if people are still reading this thread, but I just wanted to post that we use some essential oils to help our daughter. I always try to keep Eucalyptus on hand for calming bronchospasms. I rub it into the bottoms of her feet with some coconut oil and then I put socks on her. We also use frankincense although I am out of that one at the moment. I did want to share what is in the "sinus/lung" blend we get.
It has: Ravensara, Inula, Green Myrtle, Fragonia and two types of Thyme.
I am going to give Thieves a try if I can get my oil guy to blend me one!!
Thanks so much for sharing.
Michelle

PS....I got your App for my phone :-)

TheSaltyOne
04-25-2015, 10:23 PM
ToriMom- awesome info! Eucalyptus helps tons to soothe. What company is your sinus/lung blend from and have you noticed good results so far? I haven't seen any amazing benefits with Thieves myself but I've read a lot of people that really believe in it.

Thanks for downloading the app! Hope you like it and if you have suggestions don't hesitate to "submit feedback" in the app and it will email me directly.

ToriMom
04-26-2015, 03:02 PM
Hello!
The products I use are from Lifetree Aromatix. His name is John Steele--he is an archeologist and aromatics distiller out of California. He is not an MLM type of company. I have to admit I have no experience using DoTerra, Young Living,etc and I do not claim to have any expertise. I use this brand because it was recommended to me by someone I trust. I will try to find some prices to compare because I have never compared him to any other brands. I just know his products are wonderful and his knowledge is extensive. He actually called me himself and was very informative and kind when I told him I was looking for help to alleviate her CF issues. I have tried a few different Eucalyptus oils (from health food stores) and his is my favorite so far. This is my experience. I'm not promoting, selling, endorsing, etc. I am here for information and to share what helps my CF child.
I'll be in touch soon,
Michelle

2roses
04-27-2015, 09:50 AM
I've recently ordered from Rocky Mountain Essential Oils (they merged with Native American Naturals). I read that these are excellent oils (organic, sourced at origin, can be taken internally), but wanted to see if anyone here has used them before and has an opinion. They are much less expensive overall than Young living and DoTerra (with reasonable shipping). Some oils are similar to DoTerra's consultant pricing. My first experience with oils.

2roses
04-27-2015, 09:54 AM
Forgot to say that Rocky Mountain Essential Oils website has comparable blends to YL and DT. They have a matrix that maps their blends to YL and DT.

TheSaltyOne
04-27-2015, 05:40 PM
ToriMom - Sounds like a nice guy. So do they welcome phone calls? I would be interested in what his thinking is behind each oil in the sinus/lung blend. What I'm doing has been working but I would like to know exactly why it works or what other oils might work better.

2roses - I have read Rocky Mountain oils are pretty reputable and good quality. When I was initially looking for essential oils I remember them not having a wide variety so I did not go with them but I do remember reading good things.

2roses
04-28-2015, 10:52 AM
Thanks Salty! Appreciate the info. They have a lot of oils, at least from my newbie point of view. I believe they may have expanded when they joined up with Native American Nutritionals. I am intrigued by what ToriMom wrote as well. We'll give our basic approach a try for awhile and go from there. Consistency is a big issue with my teens.

I like that this thread keeps reappearing with new, helpful info.

ToriMom
04-30-2015, 02:14 PM
Salty,
I sent you a PM with contact info for John. Let me know if it does not arrive because I don't see it in my "sent" folder but I did send it today.

rmotion
05-22-2015, 04:36 PM
How does the oil when rubbed on feet fight pseudomonas in the lungs? Somebody please explain, thanks

TheSaltyOne
05-24-2015, 01:53 AM
ToriMom- I did get it, thanks.

rmotion - The idea is that the feet are connected to the different organs in the body through "access" points like pressure points. You can read a lot more about this in reflexology articles. Not only do they connect to other organs though, I've been told that the bottom of the feet and the wrists are some of the most absorbable points on the body. So anything you rub there will absorb and blend with the body easier. I could be wrong, but this would make sense why a lot of fragrances are rubbed on the wrists. Anyway, I would advise if you want to try this to look up a reflexology diagram on google images and you'll see that the points for the lungs are just under the "padding" on the bottom of the foot toward the toes. When I rub oils on the bottom of my feet I always try to shoot for that area.

To everyone following this thread... you can read all the way back to the beginning when I first posted this thread. I'm proud to say I am 13 MONTHS out of the hospital now. I have not stayed out of the hospital for this long since 2009 when I was admitted for the first time ever! I try to diffuse my oils every day for at least an hour and if nothing else I at least rub them on my feet or wrists each morning and night before bed. That being said I have only needed to be on antibiotics twice in the last 13 months and that's purely because I had 2 sinus surgeries that I had to "prep" for. So there's no tricks here, they have been an amazing find for me and my family. I hope they are working just as well for all of you! If so, please comment your results with them so others can be encouraged to try them as well. Thanks!

TheSaltyOne
07-02-2015, 02:24 AM
Hey everyone, have a look at this! Looks like more people are catching onto the essential oils for CF
http://cysticfibrosisnewstoday.com/2014/05/16/cystic-fibrosis-foundations-peppermint-oil-nebulizers-warning-well-founded-teen-researchers-findings-merit-investigation/

Kirio
07-02-2015, 08:03 AM
I am interested in trying anything that will help my kiddos get rid of bacteria in their lungs, but has anyone run across Lipoid Pneumonia in their research?

Apparently inhaling any kind of fats (as in oils) can be really dangerous, especially if your lungs are already at risk.

Does anyone have experience with this or a doctor's advice?

TheSaltyOne
08-08-2015, 03:27 PM
Hey everyone, since this thread has been viewed so many times and seems like a great topic I decided to make a video about how I use essential oils on my CF Youtube Channel. I just go through what oils I use, why I use them, how they've helped me, and where I like to buy mine from.

Here is the link to my video: https://youtu.be/FEIqfaLcBQA

I hope you enjoy :)

2roses
08-12-2015, 09:51 PM
Great video, Salty! Thanks!!

ToriMom
09-26-2015, 03:37 PM
Salty,
Can you give us an update on how you are? Are you still using oils? Are you feeling well? Any new blends you like?

TheSaltyOne
09-26-2015, 06:34 PM
Yes of course! I'm doing really good. My lung function is now at 44% which is the highest it's been since 2008!!! I'm still at 135 lbs in weight. I workout 5 days a week and I started Orkambi a few months ago (which I haven't seen any noticeable improvement directly resulting from the Orkambi). Also I still haven't been admitted in 18 months but I have been on oral antibiotics once due to being feverish and congested (after I gave it a lot of thought I think I just overdid it in the gym and that's why my body was feverish). So that's super awesome!!!

I'm still using essential oils from Aromatics International almost everyday. I try to diffuse a blend every couple of days for an hour or two at a time for "maintenance", but I at least rub 2 drops of frankincense, lemongrass, and cinnamon bark on my wrist and/or feet morning and night each day. My diffusing blend varies but it's usually lemongrass, cinnamon bark, frankincense, oregano, eucalyptus radiata, tea tree, and peppermint. I would like to learn some new blends to use though.

If you guys are interested you can follow my progress with me on my YouTube channel I've made for my cf and fitness. The link is www.YouTube.com/c/LarryBrianCF

Also here's an article that cf news today wrote about my cf story: http://cysticfibrosisnewstoday.com/2015/09/11/monday-larry-brian-i-am-an-ios-app-developer-bodybuilder-tech-geek-and-now-youtuber-i-try-to-live-life-to-the-fullest-all-while-fighting-a-genetic-lung-disease-called-cf/

Are any of you experiencing good results with the essential oils as well?

My experience has been awesome and my family and I are still shocked my health has turned around so much. Hoping for more improvements of course so I can get back to working and stuff.

Jadegreen9404
01-10-2017, 11:22 AM
Thanks SO much for all your input in this thread! Ive been looking for info on EO but have found it to be too daunting and where do I begin?? I have a 9 yr old. My only question to you ( and forgive me if youve covered this in another thread) is how do I know how many drops to use for a child vs adult? Both for topical oils and diffusing. Thanks!

ToriMom
02-13-2017, 03:57 PM
HI Jade!
I want to reply to your question because I see this thread is a little "older" so the traffic is less lately. I use 2-3 drops of oil on my daughter's feet. Cinnamon bark or Cassia is a great oil but it's "hot" so for this I also put some coconut oil on her first--and only on her feet because this oil really burns if you are not careful. Another tip is to use Peru Balsam (it's a wonderful and calm oil) and blend it 80-20 with the cinnamon. This means I put eight drops of Peru Balsam in a bottle with two drops of cinnamon. I repeat that until I have a decent amount to use in a diffuser. This is for pseudomonas though--if your daughter doesn't have PA then it may not be your best blend to begin with. She is young--you can try Eucalyptus or Frankincense first. Those two have been my favorite overall oils, but we also mix in Orange oil, Lavender oil and Tea Tree oil. Sometimes blended and other times by themselves. When you begin you can try a drop on your wrist--you will know which ones act "gently" and which ones need a little dilution. It's really all trial and error with these natural options. We still do all the traditional treatments too. This is just to help her along as best I can...she is fifteen now, almost 16. :)
Wishing you abundant health!
Michelle