has oregano oil changed your routine?

I talked to my doc yesterday and She very much discouraged me from doing OO for a few reasons.

1- You don't know what if any impurities are in it.

2- You don't know the exact amount you are getting.

3- This was the biggest point and the clincher for me. Oil does not leave your lungs. She said that it just sits in there and builds up. It cannot pass through the membranes like other things can. This has really deterred me. She said that she would further look into things since about 4 patients have inquired about it thanks to this site so I am still hoping that something good can be found.

Please everyone still keep us updated. The positives may just outweigh the problem.

Emilee
 
I talked to my doc yesterday and She very much discouraged me from doing OO for a few reasons.

1- You don't know what if any impurities are in it.

2- You don't know the exact amount you are getting.

3- This was the biggest point and the clincher for me. Oil does not leave your lungs. She said that it just sits in there and builds up. It cannot pass through the membranes like other things can. This has really deterred me. She said that she would further look into things since about 4 patients have inquired about it thanks to this site so I am still hoping that something good can be found.

Please everyone still keep us updated. The positives may just outweigh the problem.

Emilee
 

LouLou

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>lovingBenandCambree</b></i><br>I talked to my doc yesterday and She very much discouraged me from doing OO for a few reasons.

3- This was the biggest point and the clincher for me. Oil does not leave your lungs. She said that it just sits in there and builds up. It cannot pass through the membranes like other things can. This has really deterred me. She said that she would further look into things since about 4 patients have inquired about it thanks to this site so I am still hoping that something good can be found.


The OO I am inhaling is mycelized, meaning it is water soluable. Did you mention that to her? What clinic is she at if you don't mind disclosing? That's really cool that you have 4 people from this site that go to our clinic.
 

LouLou

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>lovingBenandCambree</b></i><br>I talked to my doc yesterday and She very much discouraged me from doing OO for a few reasons.

3- This was the biggest point and the clincher for me. Oil does not leave your lungs. She said that it just sits in there and builds up. It cannot pass through the membranes like other things can. This has really deterred me. She said that she would further look into things since about 4 patients have inquired about it thanks to this site so I am still hoping that something good can be found.


The OO I am inhaling is mycelized, meaning it is water soluable. Did you mention that to her? What clinic is she at if you don't mind disclosing? That's really cool that you have 4 people from this site that go to our clinic.
 

Faust

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>lovingBenandCambree</b></i><br>I talked to my doc yesterday and She very much discouraged me from doing OO for a few reasons.



1- You don't know what if any impurities are in it.



2- You don't know the exact amount you are getting.



3- This was the biggest point and the clincher for me. Oil does not leave your lungs. She said that it just sits in there and builds up. It cannot pass through the membranes like other things can. This has really deterred me. She said that she would further look into things since about 4 patients have inquired about it thanks to this site so I am still hoping that something good can be found.



Please everyone still keep us updated. The positives may just outweigh the problem.



Emilee<hr></blockquote>

#1 I agree. There is no way to 100% know it's purity unless you send off a few samples from your source to an independent lab for testing. But the same concern exists with ANY supplement, regardless how you take it. You have to go by the companies track record and reputation when considering this matter. My particular source (North American Herb and Spice) has actually used their product in research studies. I'm sure if I really poked around I could find something from them regarding their substance being tested for purity, but i'm not too concerned because how I feel now compared to how I felt before is night and day, and way makes up for any concerns.

#2 (you don't know the exact amount you are getting): Well what I take, 5 drops = 60 mg of their proprietary blend. So i'm taking slightly more than 120 mg of the stuff daily (I take 6 drops per neb, two times a day). So i'm not too sure what you mean by "You dont know the exact amount you are getting". It clearly states the MG and servings on the bottle that I have.

#3 (oil doesn't leave your lungs): Not too sure on this stickler point. I used the regular oil beforehand, and never had any form of cause for concern. My lungs actually cleared up an amazing amount. While the oil itself might not be able to go transmembrane, we are nebbing the oil for the oregano oil's constituent chemical properties such as carvacrol, thymol, etc. I have read that the terpines do go transmembrane. Regardless, the water soluble form of the oregano oil that I take is quickly absorbed regardless where it's delivered, even the lungs. Hence, one of the reasons I am an advocate for the water soluble form over the older form I used to take.


For me, any and all of these potential concerns (one seems unfounded, and the last is totally avoided if using the water soluble form) are vastly outweighed by the benefits it has proven for me, and many others. The way I feel now compared to how I felt before the oil is truely night and day. I still recommend everyone discuss the oil with their doctors and do their own research. It is ultimately up to you to try it or not try it. It doesn't benefit me at all if you do or do not try it, aside from knowing theres a very good chance others could feel as good as I do.

If you are still very apprehensive to using the oil in a neb, you can still use a facial sauna with steam inhalation, use the drops under your tongue, and take the capsules. To me the benefit isn't as stark, but it still does benefit.

It always gives me a little giggle when some CF patients are extremely apprehensive of trying a natural substance that has proven potential benefits for us (the components within the oil themselves), when these same patients will take ANYTHING their doctors hand them, regardless what it is. Just recently celebrex was shown to increase the potential for heart attacks more than 3 times what was previously thought. The collistin I inhale now states clearly that it was not investigated for it's potential mutagenetic or carcinogenic properties at all (always good news knowing what you are inhaling could quite possibly cause deep mutations or cancer). I could sit here and note MANY medications with questionable side effects or flat out unknown long term concerns, but that's not the point.

We all take risks, and we need to make informed risks via our own research and bringing upon ourselves to be our own advocates. The endless nuke cycle wasn't the answer for me anymore, so I chose to take the initiative and do my own research and start self medicating because I was getting worse under the docs care in general. Now I am in great shape, and ever thankful that I made that decision.
 

Faust

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>lovingBenandCambree</b></i><br>I talked to my doc yesterday and She very much discouraged me from doing OO for a few reasons.



1- You don't know what if any impurities are in it.



2- You don't know the exact amount you are getting.



3- This was the biggest point and the clincher for me. Oil does not leave your lungs. She said that it just sits in there and builds up. It cannot pass through the membranes like other things can. This has really deterred me. She said that she would further look into things since about 4 patients have inquired about it thanks to this site so I am still hoping that something good can be found.



Please everyone still keep us updated. The positives may just outweigh the problem.



Emilee<hr></blockquote>

#1 I agree. There is no way to 100% know it's purity unless you send off a few samples from your source to an independent lab for testing. But the same concern exists with ANY supplement, regardless how you take it. You have to go by the companies track record and reputation when considering this matter. My particular source (North American Herb and Spice) has actually used their product in research studies. I'm sure if I really poked around I could find something from them regarding their substance being tested for purity, but i'm not too concerned because how I feel now compared to how I felt before is night and day, and way makes up for any concerns.

#2 (you don't know the exact amount you are getting): Well what I take, 5 drops = 60 mg of their proprietary blend. So i'm taking slightly more than 120 mg of the stuff daily (I take 6 drops per neb, two times a day). So i'm not too sure what you mean by "You dont know the exact amount you are getting". It clearly states the MG and servings on the bottle that I have.

#3 (oil doesn't leave your lungs): Not too sure on this stickler point. I used the regular oil beforehand, and never had any form of cause for concern. My lungs actually cleared up an amazing amount. While the oil itself might not be able to go transmembrane, we are nebbing the oil for the oregano oil's constituent chemical properties such as carvacrol, thymol, etc. I have read that the terpines do go transmembrane. Regardless, the water soluble form of the oregano oil that I take is quickly absorbed regardless where it's delivered, even the lungs. Hence, one of the reasons I am an advocate for the water soluble form over the older form I used to take.


For me, any and all of these potential concerns (one seems unfounded, and the last is totally avoided if using the water soluble form) are vastly outweighed by the benefits it has proven for me, and many others. The way I feel now compared to how I felt before the oil is truely night and day. I still recommend everyone discuss the oil with their doctors and do their own research. It is ultimately up to you to try it or not try it. It doesn't benefit me at all if you do or do not try it, aside from knowing theres a very good chance others could feel as good as I do.

If you are still very apprehensive to using the oil in a neb, you can still use a facial sauna with steam inhalation, use the drops under your tongue, and take the capsules. To me the benefit isn't as stark, but it still does benefit.

It always gives me a little giggle when some CF patients are extremely apprehensive of trying a natural substance that has proven potential benefits for us (the components within the oil themselves), when these same patients will take ANYTHING their doctors hand them, regardless what it is. Just recently celebrex was shown to increase the potential for heart attacks more than 3 times what was previously thought. The collistin I inhale now states clearly that it was not investigated for it's potential mutagenetic or carcinogenic properties at all (always good news knowing what you are inhaling could quite possibly cause deep mutations or cancer). I could sit here and note MANY medications with questionable side effects or flat out unknown long term concerns, but that's not the point.

We all take risks, and we need to make informed risks via our own research and bringing upon ourselves to be our own advocates. The endless nuke cycle wasn't the answer for me anymore, so I chose to take the initiative and do my own research and start self medicating because I was getting worse under the docs care in general. Now I am in great shape, and ever thankful that I made that decision.
 

miesl

New member
Wallflower - what doctor are you seeing? (I was sure you were at U of MN - Dr. Dunitz was more than happy to have Jeremy try the HS)

-Michelle
 

miesl

New member
Wallflower - what doctor are you seeing? (I was sure you were at U of MN - Dr. Dunitz was more than happy to have Jeremy try the HS)

-Michelle
 

thelizardqueen

New member
I don't think excess oil would be coughed out with the gunk - that's like saying doesn't our inhaled meds get coughed out with our gunk? I just don't think its something to worry about.
 

thelizardqueen

New member
I don't think excess oil would be coughed out with the gunk - that's like saying doesn't our inhaled meds get coughed out with our gunk? I just don't think its something to worry about.
 
I have to say that I absolutely agree with you Sean DAvis. Thanks LOULOU and Sean for telling me about the water soluble one. Must have missed that. I am certainly one that does think that herbal methods are fantastic and can be great. I think that there is risk with whatever you take into your body. You just have to see if the risks outweigh the benefits. I am still undecided about the whole thing but am giving it considerable thought and educating myself. As with perscriptions I believe that I have to be knowledgeable and not rely on everything everyone else tells me. Like Sean said about Docs etc. I'm just glad that I can get a lot of different opinons and then make the call for myself. Thanks everyone!

Emilee
 
I have to say that I absolutely agree with you Sean DAvis. Thanks LOULOU and Sean for telling me about the water soluble one. Must have missed that. I am certainly one that does think that herbal methods are fantastic and can be great. I think that there is risk with whatever you take into your body. You just have to see if the risks outweigh the benefits. I am still undecided about the whole thing but am giving it considerable thought and educating myself. As with perscriptions I believe that I have to be knowledgeable and not rely on everything everyone else tells me. Like Sean said about Docs etc. I'm just glad that I can get a lot of different opinons and then make the call for myself. Thanks everyone!

Emilee
 

Faust

New member
NP Emilee. My goal when discussing oregano oil with everyone here was to just share how I felt with other CF's, hoping they could feel as good as I was feeling. So far it looks like way more feel atleast somewhat better than worse after using the oil, so that's good. That of course doesn't mean it's for everybody. CF's bodies are very freaky and we are all different with what stage of CF we are in and everything else. That is why I tell everyone to talk to their doc and do their own research on the substance. Granted talking to your doc will more than likely not result in anything beyond "Well I dont know, i'll have to get back to you on that", because western docs pretty much have no clue when it comes to alternative/natural approaches to our condition. They see us primarily with a standardized treatment plan that's a cookie cutter approach for all CF's. While parts of that plan are indeed very helpful, us adult CF's have been in that standardized plan for so darn long, many of it's treatments either fully aren't working for us anymore, or their effectiveness has severely degraded (I was a good example of that last time I got real sick and went through what I went through). My feelings regarding things like GSH and oregano oil that hold real promise to help us with our symptoms and increase how we feel overall, is to incorporate them into our current regimen, if only for say a month of giving any of them a serious try. If after a month you still feel the same, or maybe worse, discontinue immediately. It was worth a try because there was a chance your rewards would have been extremely high. If nothing happens or you feel slightly worse and you stop, all you are out of is about 35 bucks for either supplement. I've gotten home from one night of being a complete irresponsible fool with over 300 dollars less to my name, AND felt bad the next day, so that isn't much at all to risk for the potential rewards <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Faust

New member
NP Emilee. My goal when discussing oregano oil with everyone here was to just share how I felt with other CF's, hoping they could feel as good as I was feeling. So far it looks like way more feel atleast somewhat better than worse after using the oil, so that's good. That of course doesn't mean it's for everybody. CF's bodies are very freaky and we are all different with what stage of CF we are in and everything else. That is why I tell everyone to talk to their doc and do their own research on the substance. Granted talking to your doc will more than likely not result in anything beyond "Well I dont know, i'll have to get back to you on that", because western docs pretty much have no clue when it comes to alternative/natural approaches to our condition. They see us primarily with a standardized treatment plan that's a cookie cutter approach for all CF's. While parts of that plan are indeed very helpful, us adult CF's have been in that standardized plan for so darn long, many of it's treatments either fully aren't working for us anymore, or their effectiveness has severely degraded (I was a good example of that last time I got real sick and went through what I went through). My feelings regarding things like GSH and oregano oil that hold real promise to help us with our symptoms and increase how we feel overall, is to incorporate them into our current regimen, if only for say a month of giving any of them a serious try. If after a month you still feel the same, or maybe worse, discontinue immediately. It was worth a try because there was a chance your rewards would have been extremely high. If nothing happens or you feel slightly worse and you stop, all you are out of is about 35 bucks for either supplement. I've gotten home from one night of being a complete irresponsible fool with over 300 dollars less to my name, AND felt bad the next day, so that isn't much at all to risk for the potential rewards <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Jane

Digital opinion leader
Today our doctor told us not to use OO with our boys. She said since it has only been tested with animals she doesn't feel it is a good idea to try it at this point. She said "so many of these things come and go, like the fish oil thing a few years ago". She tends to be very conservative and usually anti-herbal. Sean, or anyone else, do you know of anything documented on OO for people? I'd hate to let an opportunity go by if OO can help, but I also wouldn't start it without her approval.

Thanks
Jane
 

Jane

Digital opinion leader
Today our doctor told us not to use OO with our boys. She said since it has only been tested with animals she doesn't feel it is a good idea to try it at this point. She said "so many of these things come and go, like the fish oil thing a few years ago". She tends to be very conservative and usually anti-herbal. Sean, or anyone else, do you know of anything documented on OO for people? I'd hate to let an opportunity go by if OO can help, but I also wouldn't start it without her approval.

Thanks
Jane
 
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