has oregano oil changed your routine?

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catboogie

New member
i know some of you who have told your doctors about the oregano have said they thought it was fine to do as long as you kept up your other medicines and regimines. i was wondering two things: one, have you (despite this advice) changed your routine any? i.e. stopped doing so much pt b/c it isn't necessary?

and second, if you haven't gotten to the point of full oregano bliss yet, do you think that if you did, you might cut back on medicines that were no longer necessary? just as an experiment even?

i guess this kind of ties into sean's questions because i was thinking: what if the oo and gsh or whatever work so well that we stop needing the pulmozyme or the tobi, all that expensive stuff that ties us to our insurance plans?

laura
 
C

catboogie

New member
i know some of you who have told your doctors about the oregano have said they thought it was fine to do as long as you kept up your other medicines and regimines. i was wondering two things: one, have you (despite this advice) changed your routine any? i.e. stopped doing so much pt b/c it isn't necessary?

and second, if you haven't gotten to the point of full oregano bliss yet, do you think that if you did, you might cut back on medicines that were no longer necessary? just as an experiment even?

i guess this kind of ties into sean's questions because i was thinking: what if the oo and gsh or whatever work so well that we stop needing the pulmozyme or the tobi, all that expensive stuff that ties us to our insurance plans?

laura
 
A

anonymous

New member
I have not started Oregano, mainly cause I havent got an ok from the Doc yet, but when or if I do get to, I (as of right now) wouldnt stop my other treatments, and would continue to do them, unless my doc says its ok, not to. If for some reason I feel that some of my meds are pointless then I would consult with my doctor first before stopping any of the meds/treatmens.

Jennifer (PrincessJDC)

Live, Love and be Happy
 
A

anonymous

New member
I have not started Oregano, mainly cause I havent got an ok from the Doc yet, but when or if I do get to, I (as of right now) wouldnt stop my other treatments, and would continue to do them, unless my doc says its ok, not to. If for some reason I feel that some of my meds are pointless then I would consult with my doctor first before stopping any of the meds/treatmens.

Jennifer (PrincessJDC)

Live, Love and be Happy
 
C

CowTown

New member
This is something I'm thinking about too. When I see my doctor this month, I'm going to let him know what I'd like to try and see what he says, I'm going to bring with me written info in case he isn't up on these certain supplements. I am going to propose to my doctor that I try nebbing GSH daily for a 6 month-year trial basis (maybe up to year) without taking Tobi and possibly Polmozyme too since that is mainly for inflamation purpose anyways, and see what happens to my lung function. I'm starting to think of experimenting with these things since what I've been doing hasn't been increasing lung function or doing anything that I can tell. I beleive they're maintaining health to a certain point but they're certainly not beating anything and I don't see the improvement that I'd like to see. I think it's a good argument to ask to stop Tobi so that it's there when you really need it and are sick. Anyways, that's what I'm thinking of doing. Also, I have this other bug that's apparently uncommon for CF, but it is CF related (MAC) that I want to do away with. I would MUCH rather try GSH for one year and see if that reduces the bug or kills the bug before commiting to 4 antibiotics that will potentially put me in kidney failure and loose hearing. No thank you. That's my plan!
 
C

CowTown

New member
This is something I'm thinking about too. When I see my doctor this month, I'm going to let him know what I'd like to try and see what he says, I'm going to bring with me written info in case he isn't up on these certain supplements. I am going to propose to my doctor that I try nebbing GSH daily for a 6 month-year trial basis (maybe up to year) without taking Tobi and possibly Polmozyme too since that is mainly for inflamation purpose anyways, and see what happens to my lung function. I'm starting to think of experimenting with these things since what I've been doing hasn't been increasing lung function or doing anything that I can tell. I beleive they're maintaining health to a certain point but they're certainly not beating anything and I don't see the improvement that I'd like to see. I think it's a good argument to ask to stop Tobi so that it's there when you really need it and are sick. Anyways, that's what I'm thinking of doing. Also, I have this other bug that's apparently uncommon for CF, but it is CF related (MAC) that I want to do away with. I would MUCH rather try GSH for one year and see if that reduces the bug or kills the bug before commiting to 4 antibiotics that will potentially put me in kidney failure and loose hearing. No thank you. That's my plan!
 
A

anonymous

New member
I've been wondering about that too. I asked my doctor about it last week (the OO and the Hypertonicsaline). He doesnt think I need the saline because my lungs aren't that bad yet and he's not convinced its nothing more than an irriatent (admin, please add a spell checker). He didn't even address the OO, just said he'd look into it.

I would like to try both. I say why wait for your lungs to get worse when there is a possibility of keeping them as clean as possible? I know that if I were to use them and see great results, I would definatly experiment with not using the other nebs. Drug companies make too much money off of us, and I'm tired of being tied down with insurance stress.

While I know the OO is not an absolute proven answer, it gives me a little comfort to know that if I do lose my insurance again and can't afford the nebs, I can try the OO or Hypertonic without fear of poverty.

--Wallflower
 
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anonymous

New member
I've been wondering about that too. I asked my doctor about it last week (the OO and the Hypertonicsaline). He doesnt think I need the saline because my lungs aren't that bad yet and he's not convinced its nothing more than an irriatent (admin, please add a spell checker). He didn't even address the OO, just said he'd look into it.

I would like to try both. I say why wait for your lungs to get worse when there is a possibility of keeping them as clean as possible? I know that if I were to use them and see great results, I would definatly experiment with not using the other nebs. Drug companies make too much money off of us, and I'm tired of being tied down with insurance stress.

While I know the OO is not an absolute proven answer, it gives me a little comfort to know that if I do lose my insurance again and can't afford the nebs, I can try the OO or Hypertonic without fear of poverty.

--Wallflower
 
L

LouLou

New member
My care has not changed. I do everything exactly the same except that I am no longer nebbing albuterol by itself but rather no with the OO drops. My doctor doesn't know about my change in my self care. This is my personal decision and do not suggest that others start OO without consulting their physician. I would have told him but I'm considering if I even want to stay at this clinic. I think they might not be up to par with cross contam. issues - A MUCH BIGGER PROBLEM>
 
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LouLou

New member
My care has not changed. I do everything exactly the same except that I am no longer nebbing albuterol by itself but rather no with the OO drops. My doctor doesn't know about my change in my self care. This is my personal decision and do not suggest that others start OO without consulting their physician. I would have told him but I'm considering if I even want to stay at this clinic. I think they might not be up to par with cross contam. issues - A MUCH BIGGER PROBLEM>
 
A

anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>I've been wondering about that too. I asked my doctor about it last week (the OO and the Hypertonicsaline). He doesnt think I need the saline because my lungs aren't that bad yet and he's not convinced its nothing more than an irriatent (admin, please add a spell checker). He didn't even address the OO, just said he'd look into it.



I would like to try both. I say why wait for your lungs to get worse when there is a possibility of keeping them as clean as possible? I know that if I were to use them and see great results, I would definatly experiment with not using the other nebs. Drug companies make too much money off of us, and I'm tired of being tied down with insurance stress.



While I know the OO is not an absolute proven answer, it gives me a little comfort to know that if I do lose my insurance again and can't afford the nebs, I can try the OO or Hypertonic without fear of poverty.



--Wallflower<hr></blockquote>

I agree with Wallflower on the first paragraph. My doc didnt think that I needed to take hyptertonic saline cause my lungs Im guessing he thought was ok, but 65% pft lung function is NOT ok with me, the higher the better I think, but I also think my doc thinks that as long as my pfts are staying around that regin he is ok(as long as they are not dropping). I gave him papers about OO now Im just waiting to see if he will let me take it or not. Iam taking Hypertonic Saline thou, didnt want to confuse anyone, the doc just had me ask him again two months later about taking it, I guess he thought I would forget about wanting to take it or something, he was wrong so he had set me up with taking the stuff. (hope this isnt too confusing)

Jennifer (princessJDC)

Live, Love and be Happy
 
A

anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>I've been wondering about that too. I asked my doctor about it last week (the OO and the Hypertonicsaline). He doesnt think I need the saline because my lungs aren't that bad yet and he's not convinced its nothing more than an irriatent (admin, please add a spell checker). He didn't even address the OO, just said he'd look into it.



I would like to try both. I say why wait for your lungs to get worse when there is a possibility of keeping them as clean as possible? I know that if I were to use them and see great results, I would definatly experiment with not using the other nebs. Drug companies make too much money off of us, and I'm tired of being tied down with insurance stress.



While I know the OO is not an absolute proven answer, it gives me a little comfort to know that if I do lose my insurance again and can't afford the nebs, I can try the OO or Hypertonic without fear of poverty.



--Wallflower<hr></blockquote>

I agree with Wallflower on the first paragraph. My doc didnt think that I needed to take hyptertonic saline cause my lungs Im guessing he thought was ok, but 65% pft lung function is NOT ok with me, the higher the better I think, but I also think my doc thinks that as long as my pfts are staying around that regin he is ok(as long as they are not dropping). I gave him papers about OO now Im just waiting to see if he will let me take it or not. Iam taking Hypertonic Saline thou, didnt want to confuse anyone, the doc just had me ask him again two months later about taking it, I guess he thought I would forget about wanting to take it or something, he was wrong so he had set me up with taking the stuff. (hope this isnt too confusing)

Jennifer (princessJDC)

Live, Love and be Happy
 
F

Faust

New member
This is kind of a slippery slope. While I personally think oregano oil is an amazing substance for us, and by now we have quite a few CF's who swear by it, I still recommend people stay on their old regimen med wise. I still do pulmozyme and collistin as my other two nebs (other is oregano oil and albuterol). Could we technically drop our others and just stay on oregano? Sure probably. The anti-inflamatory properties are extremely high, so that generally takes care of that concern (i'm living proof with my gout being destroyed). Our bugs can't get resistant to it due to how it kills them (unlike almost all other antibiotics). So if someone had say a time machine to test out this theory for say a year, and then compare health and symptoms, it would be very cool. But I don't recommend anyone do it because if you have insurance you aren't forced to. Now if all of a sudden I was in a situation where I couldn't get pulmozyme and collistin, and oregano oil was my only medicine, i'd be forced to endure this experiment. I would dose heavily with the stuff in several forms and see what happens, as in compared to not doing the other two at all.


But, using the oregano oil or even GSH is about SUPPLEMENTING your care, not getting rid of your other conventional treatments. We are looking for things to add to our current arsenal that have a large positive impact to what we already do, not addition through subtraction. It would be interesting to find out though, if someone like myself who some think have mild CF, could exist and flourish on just heavy doses of oregano oil, monolaurin, and GSH and other well known supplements to help CF only, and not do conventional meds. But as I said, that's a slippery slope, and one I surely don't advocate.


I haven't tried GSH yet, but plan on it. Aside from GSH as an unknown for how I currently feel and if I could improve, the only way I have felt better while on oregano oil is if I also do my vest daily.
 
F

Faust

New member
This is kind of a slippery slope. While I personally think oregano oil is an amazing substance for us, and by now we have quite a few CF's who swear by it, I still recommend people stay on their old regimen med wise. I still do pulmozyme and collistin as my other two nebs (other is oregano oil and albuterol). Could we technically drop our others and just stay on oregano? Sure probably. The anti-inflamatory properties are extremely high, so that generally takes care of that concern (i'm living proof with my gout being destroyed). Our bugs can't get resistant to it due to how it kills them (unlike almost all other antibiotics). So if someone had say a time machine to test out this theory for say a year, and then compare health and symptoms, it would be very cool. But I don't recommend anyone do it because if you have insurance you aren't forced to. Now if all of a sudden I was in a situation where I couldn't get pulmozyme and collistin, and oregano oil was my only medicine, i'd be forced to endure this experiment. I would dose heavily with the stuff in several forms and see what happens, as in compared to not doing the other two at all.


But, using the oregano oil or even GSH is about SUPPLEMENTING your care, not getting rid of your other conventional treatments. We are looking for things to add to our current arsenal that have a large positive impact to what we already do, not addition through subtraction. It would be interesting to find out though, if someone like myself who some think have mild CF, could exist and flourish on just heavy doses of oregano oil, monolaurin, and GSH and other well known supplements to help CF only, and not do conventional meds. But as I said, that's a slippery slope, and one I surely don't advocate.


I haven't tried GSH yet, but plan on it. Aside from GSH as an unknown for how I currently feel and if I could improve, the only way I have felt better while on oregano oil is if I also do my vest daily.
 
R

RoyalPrince

New member
the use of OO hasn't changed my regiment but the loss of insurance at the beginning of the year has... i just got the OO on monday and started use right away but i haven't been using tobi or pulmozyme since i can't get them thru my insurance anymore... the albuterol cost enough just to get it... i'm just using the OO may order other things to try later, but testing one thing at a time right now so if i have an improvement in a month i'll know for sure what helped...
 
R

RoyalPrince

New member
the use of OO hasn't changed my regiment but the loss of insurance at the beginning of the year has... i just got the OO on monday and started use right away but i haven't been using tobi or pulmozyme since i can't get them thru my insurance anymore... the albuterol cost enough just to get it... i'm just using the OO may order other things to try later, but testing one thing at a time right now so if i have an improvement in a month i'll know for sure what helped...
 
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