<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jonathan</b></i>
Hi all, I am a 20 year old guy with CF and up untill a few years ago I was basically a normal person (never had an infection or been to hospital). My condition at the moment is pretty mild at worst.
A few years ago I got a lung infection and haven't managed to shake it since (by infection, I mean the cough that comes and goes with CF.
About a year ago, after a few months of not doing treatment, i got a huge shock when I blew a 77% (FEV(1)) up untill then my worst was 95%. from there, i went on inhaled antibiotics and after this inhaled saline and GSH (great stuff btw). After this, my lung function improved to 88%.
After this I went on a trial run of pulmozyme (1 month) which improved my lung function to 93%.
during the trial run I read about oregano oil on this forum and ordered the stuff. I started inhaling just oregano oil (4-5 drops in 3-4mls water) once a day at night.
I did this for around 40 days and then got my lung function checked.
Well I was rather surprised to see that my lung function had DROPPED significantly from 93% to 84% (FEV(1)) and from 109% to 107% (FVC).
I have a few theories of why it didn't work:
1. the oregano oil simply doesn't work;
2. because i wasn't taking anything to stimulate a cough,
3. there was no way for my body to get rid of the dead mucus;
4. I am not culturing anything that is vulnerable to the OO.
One other thing that needs mentioning is that my diet was not very good during this period. In the past however, my lung function would not have dropped anywhere near what it did in this period, if my diet was equally bad.
I had very high hopes for oregano oil, but it seems that it hasn't worked for me.
Questions?
Comments?
Jonathan</end quote></div>
I'm sorry it didn't work Jonathan. Thanks for being honest with the details surrounding your level of care/compliance previous and during your attempt with oregano oil. Also, what type of oregano oil did you use?7 There are quite a few brands to choose from, all varying in their carvacrol content, though most claim atleast 60% carvacrol content. There is also the regular oil, and the mycellized oil (dissolves in fluids). Then you have the only brand that I have inhaled and thats the brand from North American Herb And Spice - The P73 line. That is the brand that has had the most testing done on it.
Regardless of all that though, as others have pointed out, and I have said from way early on, we are all different, and there fore might not respond in the same way to any particular thing, including supplements OR prescription drugs.
Oregano oil primarily destroys our common bug, Pseudomonas aeruginosa, with less inhibition towards other bugs. It kills primarily via heat, hence why it doesn't lead to resistance unlike conventional antibiotics.
Also, the primary delivery system for the oil (standard oil mostly) has always been the conventional sublingual method of under the tongue (like the other guy posted in here about).I started out using it under the tongue and noticed how good I was feeling when the doctors and 24 days of intensive IV antibiotics barely helped me. I was the one who just applied logic of how it functions vs PA and started to inhale it after a period of using it primarily under the tongue. I started using the regular oil for inhalation but it was very messy (water based fluid + oil does not mix well), and even though I felt fine, after talking to some medical personell about inhaling any kind of oil into the lungs (non mycellized), it wasn't a good idea.
I then found out about the mycellized form of the oil and started using that, continuing the good results. I told my CF doc and PCP doc about what I was doing, and they were both very skeptical. Now after a decent period of time doing this regimen (I went off of it at one point briefly), he has told other CF's, and told them to look into it as well. Now several CF's from my area are doing it, apparently with good results.
I think aside from it just possibly flat out not working for you for various reasons, they are many reasons why your lack of care compliance (like you stated) could have done enough damage, that even oregano oil couldn't have helped. Aside from antimicrobial tests in the lab and in food science, it's healthful contents being analyzed, and it's anti-inflammatory properties looked into, this substance has not been studied specifically for treating CF aside from anecdotal evidence from people like myself.
What you mentioned in your theories why it might not have helped you:
2. because i wasn't taking anything to stimulate a cough,
3. there was no way for my body to get rid of the dead mucus
#2: That is very important with every aspect of our care. You must cough that evil goo up, and even though oregano oil is surely a good stimulant for some people, the standard albuterol/hypertonic combo with the OO added is probably the best way to go (what I do).
#3: Same thing here. If I did nothing at all for a year and only inhaled OO with water, i'm pretty sure my biofilm of mucous in my lungs would be so strong, it wouldn't help at any noticable level.
When I got my worst (when the docs couldnt do anything for me, and right before I started using OO) I never did my vest, except for when I was really sick. I ALWAYS did my neb medications, but extremely rarely did my vest. That over time helped to make me sick.
I feel OO is most effective when combined with our current proper care of our full neb battery, a good inhaled antibiotic like collistin, coughing a ton of the goo up, and including the mycellized OO to help naturally inhibit our PA growth and help with inflammation.
Not everyone is comfortable with inhaling it, and I fully understand why they might feel that way. For those people, I recommend using the regular substance under the tongue like I did in the begining.
There is a ton of strong evidence showing what oregano oil, and more specifically carvacrol does to PA. Just wiki up carvocrol and you can see what I am refering to. Now throwing complicated variables like every individual CF patient, what they culture, the extent of their lung damage, their care compliance, and what meds they take into the mix further clouds the efficacy potential, or at least the interpretation of it.
I do know this...Before OO I always showed medium to heavy growth of my PA and my staph. Ever since inhaling the stuff, I always show "very light" growth of each. Obviously OO will not totally kill off my bugs, but the anecdotal evidence for it massively inhibiting what I do have (which is a good thing) seems pretty strong.
A while back I tried out the buffered inhaled GSH. I didn't notice any change. That does not mean it doesn't work. I was on it for a month and didn't give it enough time, and I may have also not been doing a proper dose. Like oregano oil, there is a ton of research and anecdotal evidence to support the claims of GSH as well. I wish the CFF would seriously look into a controlled oregano oil study for CF patients, but I highly doubt it.
I would recommend that you become more compliant with your regular CF regimen and stick with all your standard nebs, and also become vigilant with regards to your mucous clearance either via the vest, frequencer, or CPT of some kind...Do that for a while, get a good base line of your lung health when it is stable, and THEN try the OO in a normal, realistic way over a respectable period of time. That way you can fully 100% know what is up, and where you individually stand with it.
