sean davis

[anonymous]

Hey I was wondering, I noticed you said in your first post about oregano oil that you have cepacia? Do you have genomovar III? Is it pan resistant or sensitive? I am just curious as to what you culture. I have cepacia also and am interested in the oregano oil. What meds do you take normally, or when you are on cleanouts? There arent too many people on here w/ cepacia so i am just wondering!

Caitlin

 

[Faust]

Nah sorry, I don't have cepacia. Don't know why you thought that. I have PA. I don't know if oregano oil works against cepacia, but I would guess it would guessing that the bacteria are closely related (similar structures). If I were in your shoes with such a nasty bug, i'd be using the oil. I'm not sure how bad cepacia is now with newer drugs, but back in my day is was a REAL bad thing to have.

 

[anonymous]

There has been some success with using amiloride to get rid of cepacia. However, it will probably be difficult to convince a doc to prescribe it. It is currently investigational.

 

[Diane]

I read that article about tobi and amiloride getting rid of cepacia in 3 out of 4 patients. I sent my doctor the article and he got the full article online ( only for doctors eyes) and tried to find amiloride, and we can't get it here. I cant remember why it is that we are unable to get it, but we cant. I would have been more than willing to try that combo.............

 

[anonymous]

sean, not be offensive like i'm sure i will sound, but i feel like you're really really pushing the oil. why have you become an internet advertisement?

 

[Faust]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>sean, not be offensive like i'm sure i will sound, but i feel like you're really really pushing the oil. why have you become an internet advertisement?<hr></blockquote>


That's your opinion, and I don't care. It's because i've found something that has dramatically helped me, where conventional CF treatment has seriouslly lessoned it's benefit for me. I have CF and PA. I have extrapolated that anecdotal evidence with my own research, and recommended that others in my position (since this forum is about CF) do their own research and talk to their doctors about the substance, and possibly give it a legitimate try. If it doesn't work for others like it has worked for me, they haven't lost much, and at the least gained an all natural essential oil for their skin, or a good antiseptic in general. But the chance that it might work for them like it has worked for me, and dramatically increase their quality and length of life, why not suggest it? I have seen countless people die with CF, and it's a horrible thing. If I knew of something that could have kept that process at bay for a longer period of time and made their life better in the process, but kept the information to myself, what does that make me?

Now that was my serious reply. As for my kneejerk reply:
By the way if you want anyone to take you serious, atleast log in and don't remain Anonymous. Not to sound offensive like i'm sure i will sound, but i feel like you're really really closed minded and paranoid and feel anyone that is exuberant with something that they feel can help others, they have an underlying personal gain in the matter. Why have you become such a paranoid cynical person? There see I can do it too. Do I need to stop there or shall I continue on with my similar knee jerk "offense" response that isn't pleasant?


In short, if you want to try something (regardless what it is) that has helped someone else with your condition with limited to no risk, either do it or don't. That is up to you. But sometimes if I see someone that it could possibly help like it helped me, I might recommend them trying it. Oh by the way, I hear enough water consumption can greatly help your body fight off infection. OH MY GOD I MUST OWN ALL THE WATER ON EARTH AND I MUST BE TRYING TO MAKE A LIVING OF OTHERS WHO BELIEVE THAT!! OH MY GOD!

 

[anonymous]

One individual that has tried or is about to try obtained amiloride from Italy pharma through a contact in the UK. I don't have the specifics. You may want to join the crataegus yahoo newsgroup and ask about amiloride. I believe that someone there has more information.

 

[Diane]

In defense of Sean, When i started using glutathione ( and also when i started using L-Lysine for hemoptysis) i came on this site telling everyone about it. I started to feel like i was sounding like a broken record every time i mentioned either of them, but i wanted to let everyone know they both had great benefits for me. If it helped even one person with cf looking for a possible solution to hemoptysis or just cf effects in general, it was worth sounding like a broken record. If the oregano oil turns out to be a good thing down the line you may be thanking him someday. I myself havent tried it, and someday may after a while of hearing how people are doing with it. I am more than open to listen to anything anyone with cf has to offer in the way of helping . You never know what may help.

 

[Faust]

Thanks Diane. That has been my only motivation the whole time. I'd feel like a poor excuse for a human being if I found something that really helped me and I didn't tell others to atleast look into it, knowing that the disease is degenerative in nature. Theres tons of supplements out there that can potentially help cf, oregano oil is just one. I'm not experimenting with raw organic extra virgin non processed coconut oil to get the pure lauric acid fatty acid into my system to turn into monolaurin, so I don't have to rely on the capsules. If I seem to have added benefits from that, i'll discuss that also.

 

[anonymous]

"I am a 34 year old cystic man living in the Tampa FL area. I have been involved in the CF community (not so much since capacea hit the scene)...."

I guess this is why I thought you had it! I realize now that you were just saying you dont want to catch it....I see....! Sorry. Anyway yeah I have cepacia...

As for the tobra/amiloride study -- Diane and everyone else-- I too read it and showed it to my doctor. It turned out that the head of pulmonary and another doctor at my hospital are setting up a study for it, and it looks promising. I go to Children's in Boston. The article was really interesting. Can you imagine eradicating cepacia?! Anyway, they said it might take 6-9 mo's to set up the study (this was back in october) but that I could be one of the participants. I will let you know either way...

I usually dont do studies, and am hesistant about them, but I was interested in this. My only concern is that I dont tolerate Tobi very well, or that is, it does nothing for me. However, maybe with the amiloride there would be a different effect.

Anyway, i think that sean davis' info about the oregano oil is great. It might not work for everyone but i certainly appreciate when people come on the board and talk about things that are non-western-medicine options, since they are the hardest to find concrete info about. I personally like his extensive explanations of how he does it and everything, because it is good info! I like to hear detailed accounts of what people culture/what thier symptoms are/ and what changed, etc.

Caitlin

 

[EB24]

To Diane and Sean Davis - I DO have cepacia (as Diane knows) and I take both the Glutathione and the Oregenol Oil and both are things I will not be without due to what I have experienced. Thanks to you too for sharing your info. It has greatly helped. I'll play that broken record for you.

 

[Faust]

<blockquote>Quote<br><hr><i>Originally posted by: <b>EB24</b></i><br>To Diane and Sean Davis - I DO have cepacia (as Diane knows) and I take both the Glutathione and the Oregenol Oil and both are things I will not be without due to what I have experienced. Thanks to you too for sharing your info. It has greatly helped. I'll play that broken record for you.<hr></blockquote>


Great to hear man. It makes me happy knowing i've contributed with helping someone else somewhere have a better/longer life dealing with this horrible disease. So what have your experiences/positive changes been with the oregano oil? I'd ask about the glutahione, but i have zero experience with it. Next time i see my CF doc i'll ask him about it, because i'm always open to anything that isn't too damaging that can help my CF also.



On another forum a post transplant patient with CF had to stop using the oregano oil because they thought it gave them bad headaches. Which is possible, but it's the first time i've heard about that as a reaction to it. But then again, people post transplant are on all kinds of crazy drugs, so who knows if it had some kind of interaction or not. But out of all the CF and non CF people I know on the substance, that's the first report of headaches.

 

[EB24]

My experience so far with the Oil is great. I have been taking 2 of the Super Strength pills 2X a day. It seems to be clearing out my lungs almost if not better than IV antibiotics. That is a huge plus. Plus I have been sleeping at night without having my coughing spells. If it were just helping with the sleep it would be worth it but since it is helping in more than one way it is a BONUS.

 

[Faust]

Great! If anyone asks me from now on i'll just point to you <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[debs2girls]

SeanDavis, maybe I need to sign you up to sell Juice Plus with me....lol...
Debbie

 

[Faust]

<blockquote>Quote<br><hr><i>Originally posted by: <b>debs2girls</b></i><br>SeanDavis, maybe I need to sign you up to sell Juice Plus with me....lol...

Debbie<hr></blockquote>


Well this wasn't an example of it (oil of oregano), but I am a pretty good salesman.

 

[nobody]

Sean Davis,
Do you have any results (FEV1 or FVC?) from prior to Oregano Oil and after?
I'd be very interested to see what the diff is!
-steve

 

[Faust]

<blockquote>Quote<br><hr><i>Originally posted by: <b>nobody</b></i><br>Sean Davis,

Do you have any results (FEV1 or FVC?) from prior to Oregano Oil and after?

I'd be very interested to see what the diff is!

-steve<hr></blockquote>


Alll I know is that before my last hospital admission, I had up to 108% total capacity. I got sick and I went down to 50% capacity. After 6 days of hospitalization with massive antibiotics, and then 2 whole weeks (added onto that) of home IV antibiotics (basially the same thing, but done at home to save my insurance money), I had about 85% capacity. The last big of goo in my lungs, I wasn't able to get rid of. I asked my doctor, and he just wanted to set me up on other massive courses of antibiotics. I said F that, and realized I had to now be my one true advocate. I did what I did, and after a while I got completely clear. I know right now that if I had a PFT, I would if not be at or beyond, be very close to 100% capacity just by how I feel, and how I breathe.


I plan on going to see my regular CF doc sometime soon (first quarter 06 more than likely), so when I find out my real readings, i'll relay them to everyone else.

 

[anonymous]

ok, i've been reading this ongoing discussion around oregano oil and now i feel i really have to add my two cents worth............i too am a big fan of natural therapies if and when they are available. To me it's a fairly obvious choice - super strong chemicals that can have nasty side effects and less effect over time - or a natural therapy with few if any side effects and no risk of developing resistance.......to me it's an obvious choice to go natural as much as possible, thereby saving the very strong chemicals until absolutely required. Don't get me wrong, antibiotics save lives and are essential for us somteimes, but they are not the only option. I have been using a natural therapy since i landed in hospital with a moderate infection for the first time about 6 months ago. I was given intravenous tobi and ceftazadime to deal with my staph, pseudonomas, haemo influenzae and cepacia (genomovar 2) infection. After two weeks of these drugs i was completely clear and feeling great, however i wanted to stay healthy as long as possible to limit the amount of times i would need to take these drugs. I started searching the web and found a natural therapy for chronic bronchitis and have been using it twice a day ever since. And guess what? I've stopped culturing both the pseudonomas and the staph - now i only culture the cepacia. For a three week period however, I stopped using this therapy as I wanted proof it worked - bad mistake - i ended up back on IV's and cultured the pseudo and staph again along with the cepacia. I will never stop taking this therapy again and now i'm looking for a natural therapy for the cepacia, as this one has never been tested against cepacia bacteria, but doesn't appear to eradicate it.
If anybody wants to try it............here is what I do:
I bought a facial sauna for about $40. Then i purchased three bottles of good quality essential oils - one of cinnamon, one of cloves and one of thyme. I then half fill the tray in the facial sauna with water (from the tap is fine as it will boil before it is used). I then add 1 drop of each oil to the water in the sauna, turn it on and wait 2 minutes for the solution to come to the boil and start giving off steam. I inhale the steam for approx 2 minutes in long, deep, slow breaths. Some essential oils are stronger than others, so if you can handle two drops of each oil, even better!! I find this treatment has two benefits: firstly it helps to liquify any muck in my lungs, which makes it easier to cough up, therefore i do this treatment twice a day, before i do my PEP physio. Secondly, it kills both pseudomonas and staph bacteria. I now plan to add a drop of Oregano oil to this mixture (thanks Shaun) and i've also read that TeaTree oil kills both types of bacteria also, so will now add a drop of this to the solution as well. If anybody knows of any natural herb or therapy that has shown success in treating cepacia please let me know - i'll be keen to try it! <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Faust]

Yeah good ideas man. I always said that if people were averse to nebing any oils like oregano, inhalation via steam is a great choice and great alternative. I would bet that Thyme oil is the main ingredient that is kicking the crap out of your lung bugs. It's extremely strong and a massively strong antimicrobial. I would neb the stuff, but i've read a decent amount stating that thyme oil is fairly bad for internal use. Tea tree oil is also a very strong antimicrobial, but it's even worse for internal use. People have had comas and developed short term dementia with ingesting tea tree oil. Not sure of cinnamon oil, can't remember what I have found out about it. I've wanted to get a good diffuser to use like you are using, but never thought of a facial sauna thing. I will have to get one and give it a try. Thanks for the info man.



People are so used to conventional treatments for our ills, they totally neglect the benefits of natural treatments. I've said it before, and i'll say it again for the 2000th time: The oregano oil has pretty much reversed my CF symptoms (lung wise). And has done wonders for me. The conventional treatments stopped working, so there wasn't much of a choice for me, but i'm glad I found out about this substance. I highly recommend people look into different essential oils with high antimicrobial activity, and look into proper ways to treat themselves with them. I also agree that antibiotics should be a last resort, they do have their place. But to me for maintenance aspects, essential oils are the way to go, especially with inhalation, because that has the largest impact on CF patients (like it did me and many others that I informed about oregano oil, that I talk to daily).