I just want everyone to make the best informed decision possible

I promise I am not trying to start anything with this as to whether a person should or shouldn't do Oregano Oil. That is for you to decide. I just want to help everyone to make the best decision possible. If it means playing the devi's advocate then here goes.

This is a letter I received from my doctors in our quarterly newsletter. It is actually written by our pharmacist that is part of the team. It says: I am writing verbattem so

Oregano has been used over the centuries for wide variety of ailments, which include respiratory tract disorders such as asthma, bronchitits, coughs, and croup. The active ingredients of carvacrol and thymol have demonstrated weak antibacterial against bacteria such as pseudomonas aeruginosa. Of note, is that this weak antibiotic effect has only been demonstrated in a test tube and not in animals or humans. More importantly, bacteria such as pseudomonas can become resistant to other antibitotics very quickly if you try to get rid of them by using medications with weak antibiotic effects such as oregano. As a result standard antibiotics that used to be effective in treating cystic fibrosis will no longer be effective. Currently, there are no studies that have been conducted and published in standard scientific, peer-reviewed medical journals regarding the use of oregano in cystic fibrosis. Dietary supplements such as oregano are not currently regulated byt he Food and Drug Administration (FDA) thus have not been tested to be safe or effective. In addition, dietary supplements are not required to test for purity or potential contamination. As a result, dietary supplement products could become contaminiated with bacteria and the consumer would never become aware of this unless they bacame ill and actually had the product tested. More importantly, nebulizing and inhaling oregano oil is potentially very dangerous. This is due to the fact that once the oil doroplets get into the lungs, they are very difficult if not impossible to get out. Then the oil serves as a great place for more bacteria to grow. This condition is called lipoid pneumonia and is very difficult to treat. Oregano has been rated by the FDA as generally recongized as safe when used ORALLY in the amounts commonly found in foods. There is no sound scientific evidence that nebulized oregano ooil is safe or effective fo ure in cystic fibrosis. MOre importantly, there are a number of potential safety concerns with regards to nebuliaing oregano oil and its use should be avoided.

Okay so here is the information from them and you make the decision based on all of the information you have as to whether it is right for you or not. I just wanted to share.

Emilee
 

EnergyGal

New member
That is very nice of you to copy that for everyone.

Sometimes it can take a long time for side effects to occur. I sure hope that everyone taking OO keeps on doing well. The lungs are very sensitive and once you damage them I do not think you can reverse that damage.

It is such a hard call to make when someone has done amazing with this product. Perhaps they are not using the extract in oil. I wonder if this would be safer?

Clueless
 

Faust

New member
Yup. Information is always wanted regardless what that information is. I know for a fact what it has done for me, where conventional medications couldn't, so I will continue to use it. A few things though. I don't understand how this person could say that it demonstrated weak antimicrobial activity, when it has clearly been shown to provide very strong antimicrobial properties, especially against pseudomonas, and this information has been published in very respectable scientific journals. He might be correct regarding that form of lipid pneumonia if the oil isn't water soluble, but most of us now are using the water soluble form of the oil.


Another curious point in what he wrote, about how bacteria might become "super bacteria" via developing a resistance against "weak antibiotic effects". How could this be so when the properties in oil of oregano (particularly carvacrol and thymol) don't act as standard antibiotics? It's effects are wholy unlike standard antibiotic effects. From what I gathered a good deal of it's killing effect upon microbes stems from it's creation of heat within the environment where the bacteria are, and in turn killing them.

As an example: "Carvacrol is the primary component in oregano oil. Research suggests that oxygen molecules in it react with water in your body to create heat that kills germs by dehydrating them. "


I don't know how he doesn't consider such journals as Mycopathologia, International Association for Food Protection, Molecular and Cellular Biochemistry, International Journal of Food Microbiology, Letters in Applied Microbiology, Journal of Applied Microbiology, World Journal of Microbiology and Biotechnology, Journal of Chemical Ecology, Journal of Veterinary Medicine, Journal of the Science of Food and Agriculture, Archives of Animal Nutrition, International Journal of Food Sciences and Nutrition, Food Control, Cytotechnology, as being non scientific and peer reviewed. I'm sure those organizations would like to be told that.

Along with oil of oreganos very strong bacterial inhibition, antimicrobial abilities, and antioxidant properties, it is also considered a strong antigenotoxin (anti genetic mutations...Radiation would be considered a very strong genotoxin).

The one point of his I will fully agree with is that there have been zero clinical trials strictly for it's use with cystic fibrosis. Among the other points of his I will disagree with, is that there haven't been animal or human studies with the oil. Both of those statements are false. There have been studies with oil of oregano in animal and human models for various other reasons other than cystic fibrosis, with the results being positive.

Aside from wanting others to feel as good as I am feeling due to using the substance, I don't care if people use it or not. It would have been wrong for me to not share what I had discovered research wise, and real world experience wise with my use of the oil. It is ultimately up to others if they want to use it or not.

As it currently stands, there is much more anecdotal and invitro/invivo/and human study evidence pointing towards it's positive properties, than there are negative findings against it's use.

You could disagree with my perspective, that is fine. I could illustrate my point by showing before and after PFT results, much lower bacterial populations in my culture, and about several hundred different scientific peer reviewed positive studies regarding the oil.

I have been an advocate for human cystic fibrosis clinical trials from day one of using the oil. Untill that day comes (and I doubt it), we will have to weigh all the evidence and make the decision ourselves to use it or not to use the substance.

For myself, the difference in my health has been night and day, and has allowed me to seriously consider returning to work. Crystal clear lungs, huge jump in my PFT's, my skin has cleared up, my cystic related arthritis totally is gone, my previous incapacitating gout is gone, in nearly 7 months on the substance I have had only 2 lung bleeds - compared to several times a month before it's use. On top of all that, all my blood work (2 or 3 clinical visits) of a full spectrum analysis nature has come back with stellar reports.

Judging by a laymans extensive research within scientific journals looking into the oil and it's properties, my personal medical results, and my personal lab work, and the near elimination of my cystic fibrosis symptoms, I seriously can't find any reason why not to continue taking the substance. If I could find any real reason, you can trust me I would relate it to everyone else.


Really long use of regular oil of oregano especially nebbing? Who knows. That's what I started with and started to see amazing results with. As I said, I could possibly see how large quantities of lipid oils inhaled into the lungs could possibly cause problems over time, but these potential concerns totally disappear when discussing the oil in it's water soluble form.
 

Faust

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Risa</b></i>

That is very nice of you to copy that for everyone.



Sometimes it can take a long time for side effects to occur. I sure hope that everyone taking OO keeps on doing well. The lungs are very sensitive and once you damage them I do not think you can reverse that damage.



It is such a hard call to make when someone has done amazing with this product. Perhaps they are not using the extract in oil. I wonder if this would be safer?



Clueless</end quote></div>


Also don't forget it hasn't been just me that has done amazing on the oil. There have been quite a few people on here who have posted that they feel much better, have more energy, are much clearer, and one or two who have even posted that their culture after using tne oil showed no pseudomonas. This doesn't mean it is the silver bullet vs cystic fibrosis for everyone, but for myself and some others, it's pretty close.

Remember, I have some very good CF docs, and they couldn't do anything else for me. I was pumped full of antibiotics for 24 days, and developed a "Unidentified organism" in my culture. My doctors thought that I was "good enough" at 83% after that course, with my chest still filled with goo. They flat out couldnt help me. My doctors nearly fell out of their chairs when I came back and they saw my lungs and my PFT's. The only change in my CF care regimen had been the addition of oil of oregano both orally and nebulised. Coincidence? Possible. But the same "coincidence" is still on going 7 months in? That's a pretty hard pill to swallow.
 

Scarlett81

New member
SD I think it's surely no coincidence that you are "suddenly" having such better health. Of course it's the oil you inhale.
I think what worries people is maybe we see good effects when these new things come up, but we don't know what the effect of 1 yr of doing it could be, or 5 yrs or 10 yrs. Granted, it gives me much greater peace of mind to know that this is a natural substance and not a toxic chemical. But still inhaling anything into my lungs-I know for me, I'm really cautious.
The other thing is, I hope that people do realize they need water soluble oil. B/c it took me a few months of reading the info here to realize that. If I was a person that just ran out and tried something without researching it, (dumb I know, but lots of people do it), it could do some harm.
I hope that they can do something in the way of trials with this, b/c maybe it could reach more people that way.
 

JazzysMom

New member
I dont know if its my interpretation or if you seem a bit defensive SeanDavis .Most all of us appreciate your trial of the OO & sharing the info so those who want to try it can. I have discussed the ?? brought up with Emilee. My feeling of the OO is that LONG term use might turn & bite one in the *****. I am not saying that meds we use dont already do that, but at least at this point there is some type of regulation. I truly, truly hope that your results last & dont cause any secondary problems in the future. If it continues to work in a positive manner than I definitely feel more people should try it. Sadly tho things could spiral downward ten fold due to unknown results from the OO. I PERSONALLY am not willing to risk it. I have enough problems maintaining my health with the stuff we have data on. One more thing....Emilee never meant to undermine your research or success. Just as you make it known that you looked, researched etc, she wanted to share what she was told. I think that is only right!
 

kybert

New member
thanks for that emilee. people need to be informed about the risks as well as the benefits. hopefully people here will be willing to listen and wont get too defensive. *thinks back to gsh 'pushers' saga*

im another one who doesnt take oregano oil. i will not nebulise something which has not been approved for nebulisation or isnt widely known in the medical community as safe. nor would i exceed the safe recommended dosage of something orally. and that isnt the recommended dosage some quack or fanatic has made up, it is the recommended dosage the manufacturer or a regulating body etc has set.
 

JennifersHope

New member
You know I was reading what Emily wrote and I was thinking about it.... A while ago I was taking Echencia Goldenseal (spelling) when I got sick because I have heard so many good things about it...What I noticed with it is at first my symptoms did seem to go away.. I felt a little better for a while, but then low and behold within a week or two. I was sick again but this time much worse.....

I know Echenesia has pathogen killing qualities in it, works like a natural antibiotic, but for me, it only made me feel better for a little while then it came back with a vengence.. I wonder if the OO works the same way?

I am really torn about the OO because I have heard ppl say that they have felt better on it, but, I haven't seen anyone say what the long term results are of it and knowing what I do about the importance of having the RIGHT strength of antibiotics to kill an infection without causing resistance I don't think it is safe....

For me, I don't want to take it because it does have an antibiotic quality to it..and since it is not regulated, I don't want to half kill anything then have it grow back with a vengence... I remember doing experiments in Micro with all different types of bacteria, and we were trying all different antibiotics out, and what our (remember limited to a college lab setting) showed was that too weak of a dose of antibiotic only slowed the growth down of the bacteria for a little while..then after it grew back..it needed double the strength of antibiotic that other bacterias needed just to kill it or reduce it.


Anyway, like I said, everyone has to decide for themselves... Unless my health takes a rapid decline and no other antibiotics are working.. I am out..

(Sean, I am sure you know this already but this has nothing to do with your advice personally... I am glad it is working for you.. but ppl have to be free to say how they feel about OO even if it doesn't agree with you.) I do appreciate you willing to be a forerunner into trying to find a med that will help CFers..


Jennifer
 

Seana30

New member
Melissa,

I completely agree with you.

I am very interested in the results that Sean and others are showing, but am not willing to risk it with Courtney.

I don't trust herbs. I have the complete opposite reaction with them. If it says it will give you energy, it will put me to sleep for DAYS. I have never had a good reaction to any herbs. Now I do take a daily vitamin and a daily fish oil pill.

The risks to me are not worth it. I would much rather wait and see what research is found years from now when we can see the long term effects.

Seana
 

Faust

New member
I really don't know where to start. On one hand, I want things to work out how they do in good novels. I want there to be a damsel, I want there to be a protagonist, and I want there to be an antagonist. I want each of our lives to end up rosy, I want each of our lives to include a 2 car garage, a white picket fence, a dog named rover, and hopefully (if science makes it an every day accomplishment) 2.5 children.


But I know that's not how things work out to be. My life surely hasn't gone down that path. Even if my life turns out to be optimally spectacular, that is not what was planned. You know what was planned for me? You guessed it: "don't live to be 5", "Don't live to be 10", "Don't live to be 15", "Don't live to be 20 (a big one for me)", "don't live to be 25", "Only 50% live to be 30", "Not many live to be 35 (Turning 35 next month"...Then i'm sure i'm going to get the "You surely won't see 40" explanation. Even though I currently have 99% PFT's at the age of almost 35, there are quite a few 40 year old CF's, and even atleast one 50+ year old CF (off this site).

What do you say to that? If I followed a pure conventional CF treatment plan, I would have been guaranteed I wouldn't have made it to 10 years of age, yet alone 35. Am I fully discounting modern medicine? Of course not. Modern CF treatment via modern CF docs have good place in our care. I still personally inhale pulmozyme, albuterol, and most recently collistin. My docs have drastically helped me to attain the age I am now, and the quality of life I have now. Bless them and then some.

I went through the typical regimen given towards being a cystic for a very long time. Pulmozyme was probably the real first drug (besides maybe mucomist) aside from enzymes, where I was fully 100% tethered to the drug. I *STILL* take pulmozyme. You know why? Because I found out if helped me. And back then, if I stopped taking the drug even for one day, I had lung bleeds, some very bad lung bleeds.

To be honest, i'm sitting here doing #3 of my nighttime aresol drugs, currently on GSH. I often times, regardless if it's in time of duress via alternative treatment, or doing my one of several perscribed nebulized treatments, wonder when is it "OK" for others to be accepting of treatments.

Is it "ok" for you to start nebbing a fairly innocuous compound like GSH? I mean, you have heard it recommended by many of your peers, and have yet to hear any serious negative aspects discussed associated with it. Going from logical explanation of what the compounds associate themselvces with biochemically, there isn't much to say.


No you know what, i had some very good points in this discussion. I was going to continue this forward... I personally have some very sound resources for my opinion. I'm tired, in general, this has been a very long "fight", if "fight" = effort on my end. and as much as I want to fight aginst the "dying of the light", it's up to individuals to do what they want, and buy into whatever they want to.

I could fully be wrong, and explode in a maelstrom of fully resistant bacteria and due to my willingness to go to an alternative route that current medicine could not help me with, I explored. I could have allowed myeslf to continue to degrade on their terms, and have the end of my life be a certainty, or have the end of my life be a certainty and take chance. Guess which part won?


I wish the best for you guys, and I actually hope i'm wrong. I mean, if you are found to be wrong, you are just wrong. If you are found to be even somewhat correct by accident, who cares. All I ever wanted to do by presenting my findings and how I felt afterwards, was to help others.

I seriously have no idea what else to say. I've tapped the vein till it's bone dry. Even though I have spent countless hours doing my own research, applied my findings to my own life, and benefitted...I seriously don't want to ever talk about oregano oil ever again. I've done my part, i've discussed what I could. I will continue to use this substance. I now fully understand why Carl Marx had the thoughts that he had.


Just please leave me alone and never refer to me in any way regarding oregano oil, essential oils, monolaurin, or supplements in general. I give up.
 

kybert

New member
<div class="FTQUOTE"><begin quote>I mean, you have heard it recommended by many of your peers, and have yet to hear any serious negative aspects discussed associated with it.</end quote></div>

thats because everytime someone warns someone against what i would practically call supplement abuse [overdosing] they are shot down in flames, and when people discuss their side effects the 'pushers' blame something else for it. "oh no honey, you have explosive diarrhea because your planets arent aligned. it has nothing to do with the 10000 mgs of gsh you are taking!".

but that said, im fine with you sharing you experiences with oregano oil and im sure others are too. just as long as people have info from both sides and that you dont turn into one of the 'crazies'. <img src="i/expressions/face-icon-small-shocked.gif" border="0">
 

Jane

Digital opinion leader
SEAN< PLEASE DON'T GIVE UP! You have been open and forthcoming about all of your experiences. What you share provides a valuable resource for many of us, even if we disagree. Defending a position, especially an unpopular one takes energy and spirit, both of which you have shown. Don't become defeated.


Selfishly, I have some non-specific supplement questions for you that I hope you will answer:

You have done an amazing amount of research into non-conventional treatment for cf, did your parents also provide non-traditional care for you? What was their philosophy on caring for a child w/cf? When did you make the transition to alternative health care. How did you come to be so open to alternatives?


When do you sleep?

Thanks Sean, hang in there. I appreciate you!

Jane
 

JazzysMom

New member
OMG I think I am going to explode. This is going to turn into a massive debate, but I cant let it go. SeanDavis, You come on her, yes in a way, Pushing the OO. You dont call it pushing because occaisionally you would put the words "by your choice" or "in my expereince" or whatever other cliche applied thinking/hoping/assuming everyone would follow in step yet using their own judgement. You and others have some very positive experiences with it.You chose not to stick with just conventional CF treatments. Good for you. Someone who also has had "problems" thruout life with their CF is a bit more leary about it & addresses something that their doctor brings up & you go into a hissy fit (My opinion & wording) saying not to bring the topic of OO up to you again. PPPLLLLEEEAASSEE......On this site SeanDavis=OO so dont even try to go there. Just because someone doesnt fall into the role you want or OMG decides to ??? something about OO doesnt mean you have to rear your negative side if that is what its called. You gave your story, people ??? something & you got upset for lack of a better word. If you dont mean to sound (or dont mean for me to take it) as a temper tantrum than someone else needs to point it out to me that you arent doing just that. You have addressed the fact when someone is especially sick or with kids that your knowledge or recommendations of limited since you are not a doctor. I give you credit for doing that. Why cant it apply the same in this case?! I still hear the defensive argument in your words. I am not sure why they are there. The few that have ??? long term use, applaud your being a guinea pig on our part. We are so happy that you have positive results, but what it comes down to is that YOU DO NOT KNOW THE LONG TERM AFFECTS because you havent used it long enough. There is nothing wrong with that. Cant you just say.....you are right I dont know the long term affects, but I am willing to risk it & maybe You (meaning us) will learn something from it...good or bad! If you said that thruout your posting then I missed it....please show me it. I will confess that I am so irked right now anything probably could have missed my eye or been so twisted that the interpretation is off!
 

Jane

Digital opinion leader
Melissa, debate is good and enlightening as long as its kept as a debate and doesn't turn into a fight.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
Okay, since I started this post I think that I need to add a few words. Sean Davis I in know way posted this as an attack against you. Wasn't even a thought. I think the research that you have done is amazing and your willingness to share with us is fantastic. I am not even saying that somewhere down the line I won't be willing to try it myself. But at this point in my life I am not ready to risk the unknowns with it. I am sorry if I offended you but I do feel that people need to hear both sides of the story and make up their minds for themselves. Like the title of the post says, I just want everyone to make the best informed decision possible. NOT Sean Davis please don't ever talk about your experiences with OO again. I still want to hear how you are doing and what you have learned.

Emilee
 

naomiangel

New member
I personally come to this site largely to see what Sean has to say.
I think he is extremely funny and I also enjoy reading what research he has done.
We all should know that not everything here is for all of us, and yes, we should all be informed.
I have never thought Sean was "pushing" anything except information and experience, and it is nothing to get angry about.
We should all be making our own choices.
Could we imagine Sean any other way than who he is?
I am thrilled that what he has done has made the difference in his health that it has.
Kris, mom to Naomi (18) cf, cfrd, developmental delays,Ben (26) cf, cfrd 2 years out from transplant and pft's through the roof, and Adam (21) Cf 6-12-84 to 4-13-2001
Ben was listed on the transplant list the date Adam passed away, and received his lungs on Adam's birthday, June 12th.
 

JazzysMom

New member
Diversity is what makes the world go round thus we can & I guess should differ on topics. I tried to word my post so that I didnt disrespect Sean. If I didnt do a good job, I do apologize. It just hit me the wrong way this morning is all! I do hope that Sean doesnt withdraw from his assistance & sharing of what he knows...that would be a loss to everyone!
 

JennifersHope

New member
Not to be rude at all but we do have a supplement topic forum ..
Maybe if the ppl who want to read about supplements can go there.. maybe Sean can run that section... and it will be a win win for all...

Thanks,
Jennifer
 
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