I have cultured light growth of pseudo off and on for 2 years, during this time I have taken alot of antibiotics both inhaled and oral sometimes doing 2-3 months at a time and also had IV antibio. , trying to eradicate since this was the first time culturing it. However after enduring many anitibiotics and dealing with many side effects the pseudo still shows up as light growth. It is stating that is nonmuciod most recently. I am in good health and have high PFTS and my bronc results showed only aspergillis and no pseudo. So at this point I have been given a few options to maintain the pseudo. the options are to choose one -- inhaling Colistin every 3 or 4 months (for a month at a time) or inhaling hypertonic saline daily or zithromax 3x/weeky. I am trying to look at the pros and cons of each of these options but would greatly appreciate advice as to what works for others and also if there are other options available.
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looking for advice for maintaining pseudomonas
- Thread starter anonymous
- Start date
You sound like a good candidate for TOBI.
I'm on hypertonic salene and have been for the past few months. I like it a lot. It's not an antibiotic, however. It simply creates an environment in your airways that helps you cough up more mucus. So the HTC won't kill any pseudo - but it can help keep you clear of mucus.
Zithromax 3x a week also isn't used for antibiotic purposes in CF people. It's use for anti-inflammatory pruposes. Zithro won't kill pseudo either, but will help reduce inflammation in your airways and help you breath easier.
Colistin I have never been on.
TOBI is a great drug. This IS an antibiotic and will kill pseudo (as long as it can reach the site of pseudo in your lungs. If your pseudo is hiding behind a mucus plug, the TOBI wont' reach the site of the infection. Neither will Colistin for that matter).
Hope this helps <img src="i/expressions/face-icon-small-smile.gif" border="0">
I'm on hypertonic salene and have been for the past few months. I like it a lot. It's not an antibiotic, however. It simply creates an environment in your airways that helps you cough up more mucus. So the HTC won't kill any pseudo - but it can help keep you clear of mucus.
Zithromax 3x a week also isn't used for antibiotic purposes in CF people. It's use for anti-inflammatory pruposes. Zithro won't kill pseudo either, but will help reduce inflammation in your airways and help you breath easier.
Colistin I have never been on.
TOBI is a great drug. This IS an antibiotic and will kill pseudo (as long as it can reach the site of pseudo in your lungs. If your pseudo is hiding behind a mucus plug, the TOBI wont' reach the site of the infection. Neither will Colistin for that matter).
Hope this helps <img src="i/expressions/face-icon-small-smile.gif" border="0">
littledebbie
New member
I would probably vote for HS and tobi. which I know is more time consuming but the HS is so good at getting stuff out, which helps clear the way for the tobi to get through to the real culprit (that's how I think of it anyway) and I admit I like the idea that the HS is not an antibiodic. So you are getting stuff out (less place for pseudo to continue to grow) and helping tobi get on in there, and you aren't going to get resistant to HS, one less thing to worry about.
I would say lean towards collistin, HS, and look into oregano oil. At the least go with collistin and HS. I do collistin and oregano oil and both of them together is an awesome combination that has gotten me from 42% lung function to 99% and now I am able to work (and not just work, i'm truely busting my a*s weekly). Collistin by itself after a while seemed to not be doing much anymore, but oregano oil by itself was still phenomenol and helped with many other CF related symptoms, like my arthritis, skin, etc. I would shy away from Tobi. I used it every other month for maybe 6 years, and while it did help, I developed a resistance to it. Some CF's have used it that long or longer and have not developed a resistance to it. It's kind of a crapshoot.
My doc has told me that due to the way collistin attacks gram negatice bacteria (PA), PA can't become resistant to it. Which to me is the only reason I decided to do it. The oregano oil isn't the end all be all silver bullet, but it is a real strong antimicrobial, antispasmodic, and extremely strong antiinflamatory. If you use those two, and even throw in HS to the mix, I think you will be fine. I'm not currently on the HS because I think paying 40 bucks a month for sterile salt water is worse than paying 4 bucks a gallon for gas, but when I get more motivated soon I might start making my own because it is very possible as long as you keep the salt and the water sterile (easy to do for anyone with basic middle school chemistry knowledge).
On top of that, there are TONS of natural approaches to keeping your bugs in check, and keeping your inflamation down. If you want to spend a little time and use some mental elbow grease and just use google for starters, check out the wonderful world of herbs, and essential oils and what they have to offer. Look into Thyme leafe, and Cowslip flower. Both are well known for antiinflamatory and antimicrobial properties and benefitting the lungs. I take both (though i'm now out of both and gotta reorder). Basically, there is no need for you take zythromax and be dependent on yet another synthetic drug. NAC is also an extremely good idea for antiinflamatory. I take 1800mg a day (the stuff is real cheap online)...
Between my collistin, oregano oil, and my herbal supplements and NAC, I haven't had a lung bleed in a VERY long time now (while I used to have them a couple times a month), my PFT's are way back up now, my Gout (which had stopped me from drinking beer before and nearly crippled me) is totally gone and hasn't been back, and my CF related arthritis is 100% gone and hasn't been back either. As far as congestion, I rarely have anything in my lungs and only do my vest maybe once a month if that, if I do cough something up it's a quick lung oyster. I walk 95,000 steps at work in 4 days and cover around 48 miles. I'm 35 with CF and last check my PFT was 99% with very high oxy sat.
This doesn't mean you will get the same results, i'm just saying that my reliance on the nuke/sick/nuke antibiotic routine for me has been severed and I never want to go back, and will ONLY do it if I 100% have to and I am real bad off (something I don't plan on getting to due to proper care and maintenance). For all I know now I could have been off of collistin a long time ago and been fine on just the OO and the other stuff i'm doing, but I figure as long as I won't develope a resistance, why risk what isn't broken.
Some on here had had amazing results on the oregano oil, others have had great results on it for a short period of time and then had to stop due to wheezing or other side effects. I have come to the conclusion that for some people like myself it's fine for long term use, but for others (possibly people worse off than me lung wise) it's best to use it just like you would an inhaled antibiotic for say a 2-3 week period when you are sick...Or when you feel yourself starting to get sick. Or to just continually use it under the tongue on a daily basis to have a less directly lung impacting sense, and a more overall body impacting sence (gout, arthritis, aspergillus, etc).
Anyways sorry for the long post, but it was a good amount of information. It's working for me in a miraculous way, and before long will be one year of feeling as close to being "CF FREE" as one could get without actually being cured on a genetic level (Refering to being symptom free). My point is, you don't have to be a slave to every little magic pill/solution they want to give you, especially antibiotic wise. Plants have been here a very long time, and most of their mechanisms have evolved in a way so most micro organisms won't develope resistances to their natural attack mechanisms. Can't say the same for antibiotics.
Also look into a good probiotic supplement. Whatever covers the most types of good organisms in the most quantity in a 1-2 pill a day cheap solution is the way to go. It can really help your health, considering how ravaged your body and bodies flora already is by antibiotics. I currently take Now Foods Gr8-Dophilus brand.
My doc has told me that due to the way collistin attacks gram negatice bacteria (PA), PA can't become resistant to it. Which to me is the only reason I decided to do it. The oregano oil isn't the end all be all silver bullet, but it is a real strong antimicrobial, antispasmodic, and extremely strong antiinflamatory. If you use those two, and even throw in HS to the mix, I think you will be fine. I'm not currently on the HS because I think paying 40 bucks a month for sterile salt water is worse than paying 4 bucks a gallon for gas, but when I get more motivated soon I might start making my own because it is very possible as long as you keep the salt and the water sterile (easy to do for anyone with basic middle school chemistry knowledge).
On top of that, there are TONS of natural approaches to keeping your bugs in check, and keeping your inflamation down. If you want to spend a little time and use some mental elbow grease and just use google for starters, check out the wonderful world of herbs, and essential oils and what they have to offer. Look into Thyme leafe, and Cowslip flower. Both are well known for antiinflamatory and antimicrobial properties and benefitting the lungs. I take both (though i'm now out of both and gotta reorder). Basically, there is no need for you take zythromax and be dependent on yet another synthetic drug. NAC is also an extremely good idea for antiinflamatory. I take 1800mg a day (the stuff is real cheap online)...
Between my collistin, oregano oil, and my herbal supplements and NAC, I haven't had a lung bleed in a VERY long time now (while I used to have them a couple times a month), my PFT's are way back up now, my Gout (which had stopped me from drinking beer before and nearly crippled me) is totally gone and hasn't been back, and my CF related arthritis is 100% gone and hasn't been back either. As far as congestion, I rarely have anything in my lungs and only do my vest maybe once a month if that, if I do cough something up it's a quick lung oyster. I walk 95,000 steps at work in 4 days and cover around 48 miles. I'm 35 with CF and last check my PFT was 99% with very high oxy sat.
This doesn't mean you will get the same results, i'm just saying that my reliance on the nuke/sick/nuke antibiotic routine for me has been severed and I never want to go back, and will ONLY do it if I 100% have to and I am real bad off (something I don't plan on getting to due to proper care and maintenance). For all I know now I could have been off of collistin a long time ago and been fine on just the OO and the other stuff i'm doing, but I figure as long as I won't develope a resistance, why risk what isn't broken.
Some on here had had amazing results on the oregano oil, others have had great results on it for a short period of time and then had to stop due to wheezing or other side effects. I have come to the conclusion that for some people like myself it's fine for long term use, but for others (possibly people worse off than me lung wise) it's best to use it just like you would an inhaled antibiotic for say a 2-3 week period when you are sick...Or when you feel yourself starting to get sick. Or to just continually use it under the tongue on a daily basis to have a less directly lung impacting sense, and a more overall body impacting sence (gout, arthritis, aspergillus, etc).
Anyways sorry for the long post, but it was a good amount of information. It's working for me in a miraculous way, and before long will be one year of feeling as close to being "CF FREE" as one could get without actually being cured on a genetic level (Refering to being symptom free). My point is, you don't have to be a slave to every little magic pill/solution they want to give you, especially antibiotic wise. Plants have been here a very long time, and most of their mechanisms have evolved in a way so most micro organisms won't develope resistances to their natural attack mechanisms. Can't say the same for antibiotics.
Also look into a good probiotic supplement. Whatever covers the most types of good organisms in the most quantity in a 1-2 pill a day cheap solution is the way to go. It can really help your health, considering how ravaged your body and bodies flora already is by antibiotics. I currently take Now Foods Gr8-Dophilus brand.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>
SeanDavis, I had no idea your PFT's went from 44% to 99%. That's INCREDIBLE.</end quote></div>
Yup. Before I got sick I would generally float around the high 80's, and peak into the 90's here and there. When I was younger I have been past the 100's. I got REAL sick and got down to 43%. They pumped me full of antibiotics for a total of 24 days. They told me I showed an "Unidentified organism" in my culture. That absolutely scared the ***** out of me. They got me back up to around 80% maybe. I still felt like crap, I couldn't walk all that well, my head was very swimmy, my vision was crappy, I still had a TON of goo in my upper broncials even with aggressive vest treatment. Basically even with the best they had to offer, I was still in pretty bad shape, and felt horrible.
Out of anger and some depression and my sister suggesting some things I started looking into herbal things. Some things I found really opened my eyes. I did tons of research, and took bits and pieces from each area that I was interested in and applied it. My health did a MASSIVE upswing to where I am now, and nearly all my persistent CF symptoms could be said to be gone now. Which is why I was able to go back to work, and for all intents and purposes, i'm as close to a "normal" person as you can get. Granted I still do some medications, but that is expected.
I tell people at work my situation and noone believes me. They say "You look fine. You weigh how much? You benched how much? You completed the police entry physical assessments?" and all that stuff. All of this good fortune doesn't mean crap though if I don't use it.
SeanDavis, I had no idea your PFT's went from 44% to 99%. That's INCREDIBLE.</end quote></div>
Yup. Before I got sick I would generally float around the high 80's, and peak into the 90's here and there. When I was younger I have been past the 100's. I got REAL sick and got down to 43%. They pumped me full of antibiotics for a total of 24 days. They told me I showed an "Unidentified organism" in my culture. That absolutely scared the ***** out of me. They got me back up to around 80% maybe. I still felt like crap, I couldn't walk all that well, my head was very swimmy, my vision was crappy, I still had a TON of goo in my upper broncials even with aggressive vest treatment. Basically even with the best they had to offer, I was still in pretty bad shape, and felt horrible.
Out of anger and some depression and my sister suggesting some things I started looking into herbal things. Some things I found really opened my eyes. I did tons of research, and took bits and pieces from each area that I was interested in and applied it. My health did a MASSIVE upswing to where I am now, and nearly all my persistent CF symptoms could be said to be gone now. Which is why I was able to go back to work, and for all intents and purposes, i'm as close to a "normal" person as you can get. Granted I still do some medications, but that is expected.
I tell people at work my situation and noone believes me. They say "You look fine. You weigh how much? You benched how much? You completed the police entry physical assessments?" and all that stuff. All of this good fortune doesn't mean crap though if I don't use it.
Great attitude.
Have you ever thought of contacting the CFF asking them to do studies on Oregano Oil? Maybe you have or maybe they already are.
But it sounds like your methods could really benefit others. And unfortunately, many docs, especially of peds, won't use herbs or natural meds unless a clinical trial is done.
Those of us who are adults of course can do whatever the heck we want. But CF peds have little/no say in many cases, especially if they're young, and sounds like OO could really help.
Just a thought. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Congrats on your amazing achievement health-wise. I honestly had no idea how far you have come - I thought you were just always healthy and pro-active about your health.
Have you ever thought of contacting the CFF asking them to do studies on Oregano Oil? Maybe you have or maybe they already are.
But it sounds like your methods could really benefit others. And unfortunately, many docs, especially of peds, won't use herbs or natural meds unless a clinical trial is done.
Those of us who are adults of course can do whatever the heck we want. But CF peds have little/no say in many cases, especially if they're young, and sounds like OO could really help.
Just a thought. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Congrats on your amazing achievement health-wise. I honestly had no idea how far you have come - I thought you were just always healthy and pro-active about your health.
My daughter(14 mos old) was recently diagnosed with pseudo and they put her on Tobi and cipro. This is her first time. She is on Tobi for 24 days off 1month and again for 24 days. Hopefully this helps, she has a low growth level. I really like the idea of oregono oil, but i'm not sure if her docs would agree to this. I plan to research this more!!! Good luck and God Bless you!!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
My daughter(14 mos old) was recently diagnosed with pseudo and they put her on Tobi and cipro. This is her first time. She is on Tobi for 24 days off 1month and again for 24 days. Hopefully this helps, she has a low growth level. I really like the idea of oregono oil, but i'm not sure if her docs would agree to this. I plan to research this more!!! Good luck and God Bless you!!</end quote></div>
Well I tried calling a few CF organizations, explained my situation, what I used, and how it drastically changed me, and supplied them with entry level research, and I never heard back from them. I got the vibe they didn't care. At a certain point, as an adult with CF, you just gotta say Fug it, and grab your problem by the horns and do your own research into alternative treatments and experiment on your own, and apply logical findings for what problems you are trying to deal with. If Inflamation is a concern of yours (which it should be, it's one of the biggest underlying problems with CF), there are TONS of extremely strong, all natural antiinflamatory substances out there (amino acids, bark extracts, essential oils, leaf powders, etc etc). Be an adult, be your own advocate (or even your adolescents advocate, but we are primarily discussing adults here, the whole issue of treating underage CF patients with alternative treatments is a whole other ball of wax), use your brain, use the wonderful immense resource that the internet provides and search around. Google is an amazing search engine, and just by using google and logical search strings for what I am interested in, i was able to stumble across HUGE knowledge databases that compile tremendous research information on all kinds of things.
Also alternative/natural treatments don't stop at inflamatory issues, not by far. Our other main problem is bacteria (as everyone knows, but i'm just pointing it out for discussion), specifically pseudo. Then we have other organisms such as aspergillus, and other fungus' and yeast and all other kinds of scary things. What do you do? That's right, you use your brain and do more research. What type of substances affect these things that aren't toxic to us in our bodies? Sure we could just suck down a can of lysol, but that would be toxic. Look into plants, and what they have to offer. I trumper oregano oil often because it is one of the least harmful (that we know of), most beneficial (especially to us), and relatively cheap essential oil known to man. There are other wonderful oils and plants in general that can help you though, it's up to you to ask yourself if you care enough about your health to put some effort forth to quite possibly gain better quality of life, and possibly live longer with that quality of life.
I have learned a ton since I started researching natural substances and how they interact with bugs and how they act in our bodies. I could have easily said "Oh well, this is just part of having CF, I should just accept it" and roll over and cry on the internet about how I now am down to 80% lung function and I have some unknown organism growing in my lungs, staph, serratia, and stuff still in my bronchials and a horrible case of gout and CF related arthritis that makes my knees feel like crap. Did I? No. I got pissed off and rolled up my sleeves. I always knew that we live in a consumer minded, capatalistic, information controlled society where the only information we receive in mass quantity from the expected sources is the information that serves those who have the highest monetary interest. I could sit here all day on that, but that is a whole other topic. Bottom line, look into other avenues. Doctors are a great rule of thumb for treating our disease, but they aren't gods. The old ways can work for a short while, but not for the newly increased times CF's need now as they make it deep into their 30's, 40's, or beyond. They didn't develope these strategies to control our problems thinking we were going to live to be 40, 50, or farther.
I don't think all the answers to our problems are all in one place. We have many mutations and such, have many varied problems. I'm just saying that with research and educating yourself to what is available out there, it is quite likely that you could drastically reduce your negative symptoms of your disease like I have. Instead of having to rely on the endless cycle of constant hospitalizations, varied prophalactic antibiotics that result in resistant bacterial strains, and newer problems associated with aging and CF patients.
Always follow your gut instinct on things. If it smells like a rat, it's probably a rat. If (and trust me they do heavily manipulate it) a company can manipulate research information to show some natural approach is no better than placebo in some form of limited study group vs their expensive drug, they will, do, and recently have. Do your research, make logical conclusions, investigate what things are made of on a chemical basis, do more research, make more logical conclusions, try things, make notes of how you feel, try other things and rinse and repeat. Look at it like an interesting discovery hobby. Eventually you will more than likely find something, or a combination of things that are probably inexpensive, and have a strong positive impact on your symptoms.
My daughter(14 mos old) was recently diagnosed with pseudo and they put her on Tobi and cipro. This is her first time. She is on Tobi for 24 days off 1month and again for 24 days. Hopefully this helps, she has a low growth level. I really like the idea of oregono oil, but i'm not sure if her docs would agree to this. I plan to research this more!!! Good luck and God Bless you!!</end quote></div>
Well I tried calling a few CF organizations, explained my situation, what I used, and how it drastically changed me, and supplied them with entry level research, and I never heard back from them. I got the vibe they didn't care. At a certain point, as an adult with CF, you just gotta say Fug it, and grab your problem by the horns and do your own research into alternative treatments and experiment on your own, and apply logical findings for what problems you are trying to deal with. If Inflamation is a concern of yours (which it should be, it's one of the biggest underlying problems with CF), there are TONS of extremely strong, all natural antiinflamatory substances out there (amino acids, bark extracts, essential oils, leaf powders, etc etc). Be an adult, be your own advocate (or even your adolescents advocate, but we are primarily discussing adults here, the whole issue of treating underage CF patients with alternative treatments is a whole other ball of wax), use your brain, use the wonderful immense resource that the internet provides and search around. Google is an amazing search engine, and just by using google and logical search strings for what I am interested in, i was able to stumble across HUGE knowledge databases that compile tremendous research information on all kinds of things.
Also alternative/natural treatments don't stop at inflamatory issues, not by far. Our other main problem is bacteria (as everyone knows, but i'm just pointing it out for discussion), specifically pseudo. Then we have other organisms such as aspergillus, and other fungus' and yeast and all other kinds of scary things. What do you do? That's right, you use your brain and do more research. What type of substances affect these things that aren't toxic to us in our bodies? Sure we could just suck down a can of lysol, but that would be toxic. Look into plants, and what they have to offer. I trumper oregano oil often because it is one of the least harmful (that we know of), most beneficial (especially to us), and relatively cheap essential oil known to man. There are other wonderful oils and plants in general that can help you though, it's up to you to ask yourself if you care enough about your health to put some effort forth to quite possibly gain better quality of life, and possibly live longer with that quality of life.
I have learned a ton since I started researching natural substances and how they interact with bugs and how they act in our bodies. I could have easily said "Oh well, this is just part of having CF, I should just accept it" and roll over and cry on the internet about how I now am down to 80% lung function and I have some unknown organism growing in my lungs, staph, serratia, and stuff still in my bronchials and a horrible case of gout and CF related arthritis that makes my knees feel like crap. Did I? No. I got pissed off and rolled up my sleeves. I always knew that we live in a consumer minded, capatalistic, information controlled society where the only information we receive in mass quantity from the expected sources is the information that serves those who have the highest monetary interest. I could sit here all day on that, but that is a whole other topic. Bottom line, look into other avenues. Doctors are a great rule of thumb for treating our disease, but they aren't gods. The old ways can work for a short while, but not for the newly increased times CF's need now as they make it deep into their 30's, 40's, or beyond. They didn't develope these strategies to control our problems thinking we were going to live to be 40, 50, or farther.
I don't think all the answers to our problems are all in one place. We have many mutations and such, have many varied problems. I'm just saying that with research and educating yourself to what is available out there, it is quite likely that you could drastically reduce your negative symptoms of your disease like I have. Instead of having to rely on the endless cycle of constant hospitalizations, varied prophalactic antibiotics that result in resistant bacterial strains, and newer problems associated with aging and CF patients.
Always follow your gut instinct on things. If it smells like a rat, it's probably a rat. If (and trust me they do heavily manipulate it) a company can manipulate research information to show some natural approach is no better than placebo in some form of limited study group vs their expensive drug, they will, do, and recently have. Do your research, make logical conclusions, investigate what things are made of on a chemical basis, do more research, make more logical conclusions, try things, make notes of how you feel, try other things and rinse and repeat. Look at it like an interesting discovery hobby. Eventually you will more than likely find something, or a combination of things that are probably inexpensive, and have a strong positive impact on your symptoms.
Seandavis well done on such a wonderful improvment,
i am curretly on tobi for a month then colistin for a month and im also on zithromax 250 once a day every day. yet this still dont clear the pa. i've had pa since i was 2 or 3 im now 23. its always there. so i swim to keep my lungs clear as well as my nebs and stuff, my pfts dropped down to 33% i used to be up in de 60's about a year ago.
Sean Davis can i ask ya how do u use the orageo oil, do u mix it with colistin or just saline in a neb? this looks a very good way of improving ur pfts and i would like to give it ago. how much do ya use? so ur hlep would be great.
keep up the good work
tanks Bren
i am curretly on tobi for a month then colistin for a month and im also on zithromax 250 once a day every day. yet this still dont clear the pa. i've had pa since i was 2 or 3 im now 23. its always there. so i swim to keep my lungs clear as well as my nebs and stuff, my pfts dropped down to 33% i used to be up in de 60's about a year ago.
Sean Davis can i ask ya how do u use the orageo oil, do u mix it with colistin or just saline in a neb? this looks a very good way of improving ur pfts and i would like to give it ago. how much do ya use? so ur hlep would be great.
keep up the good work
tanks Bren
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Brenco</b></i>
Seandavis well done on such a wonderful improvment,
i am curretly on tobi for a month then colistin for a month and im also on zithromax 250 once a day every day. yet this still dont clear the pa. i've had pa since i was 2 or 3 im now 23. its always there. so i swim to keep my lungs clear as well as my nebs and stuff, my pfts dropped down to 33% i used to be up in de 60's about a year ago.
Sean Davis can i ask ya how do u use the orageo oil, do u mix it with colistin or just saline in a neb? this looks a very good way of improving ur pfts and i would like to give it ago. how much do ya use? so ur hlep would be great.
keep up the good work
tanks Bren</end quote></div>
Well I don't want you to misunderstand me. I haven't "gotten rid of my PA", so I don't want you to think that is what I am saying. My last culture showed "Very light" PA, as opposed to me showing regular growth, or even heavy growth in the past pre OO inhalation. My advice on supplements and natural approaches won't "get rid" of PA, because PA is pretty much impossible to get rid of, especially after a certain point that is has been inside your lungs. The goal is to just manage it, and make it's impact less aggressive and less bothersome.
Could OO kill off PA in a CF patient who has just recently colonized it and has only had it for a short amount of time? Who knows. I only know what the research has shown OO to do to PA and other microbes in labs and in some limited vivo studies. I just put 2 and 2 together and applied it to my problems. Thankfully it has worked brilliantly. Of course, that doesn't mean it will work the same for everyone, hence why I tell everyone to do their own research and experiment.
Seandavis well done on such a wonderful improvment,
i am curretly on tobi for a month then colistin for a month and im also on zithromax 250 once a day every day. yet this still dont clear the pa. i've had pa since i was 2 or 3 im now 23. its always there. so i swim to keep my lungs clear as well as my nebs and stuff, my pfts dropped down to 33% i used to be up in de 60's about a year ago.
Sean Davis can i ask ya how do u use the orageo oil, do u mix it with colistin or just saline in a neb? this looks a very good way of improving ur pfts and i would like to give it ago. how much do ya use? so ur hlep would be great.
keep up the good work
tanks Bren</end quote></div>
Well I don't want you to misunderstand me. I haven't "gotten rid of my PA", so I don't want you to think that is what I am saying. My last culture showed "Very light" PA, as opposed to me showing regular growth, or even heavy growth in the past pre OO inhalation. My advice on supplements and natural approaches won't "get rid" of PA, because PA is pretty much impossible to get rid of, especially after a certain point that is has been inside your lungs. The goal is to just manage it, and make it's impact less aggressive and less bothersome.
Could OO kill off PA in a CF patient who has just recently colonized it and has only had it for a short amount of time? Who knows. I only know what the research has shown OO to do to PA and other microbes in labs and in some limited vivo studies. I just put 2 and 2 together and applied it to my problems. Thankfully it has worked brilliantly. Of course, that doesn't mean it will work the same for everyone, hence why I tell everyone to do their own research and experiment.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
I am interested in giving OO a try it appears to be inavasive and worth a try but I have no clue how to get it and how much to take. I would like to try taking OO pills instead of inhaling- should I base it on age and or body weight?</end quote></div>
If you are hesitant to inhale the water soluble stuff (which is a concern I fully understand, and if I were on the outside lookin in, I might feel the same way), I recommend people use the regular stuff under their tongue daily. It gets absorbed into the blood stream quickly and acts upon bugs in the body. Pills are ok, but to me they are best if you have some digestive related bugs.
To me the effectiveness of OO concerning form to take it in regarding CF (1 = most effective, 3 = least) 1- inhaled water soluble, 2-regular under the tongue (sublingually), 3-pills. Any form benefits, but from my year of messing with it, that is what I have found to be most beneficial.
You can find the stuff cheapest on the internet (the brand I use anyways). I have no idea of the quality or the purity of other brands, hence why I don't advocate their use, especially for something as potentially harmful as inhalation (Not to mention I don't know of any other brands that offer water soluble forms anyways).
As for what to use the stuff with, the water soluble stuff can be used in any fluid, because it dissolves. If you plan on inhaling it via a nebulizer (like a pari neb), use a carrier fluid that is generally concerned to not be affected by adding things to it, like sterile water, albuterol, distilled water, etc. I personally do 5-7 drops (5 normally if I feel great, up to 7 if I might feel a tad sinusy or coughin a bit) in my normal albuterol when I wake up before my other neb, and again at night before my other two.
If you want to use it under the tongue, I recommend 3 (or more, you have to experiment to see what works best for you) 2-3 times a day depending on how you are doing with your CF at the time. You can either use it full time, or use it like we do some antibiotics, reactively, and stop when you feel ok.
As for pills, I forget what the bottle says, but it's a couple a day (I personally wouldn't bother).
Here is a FAQ that answers many other questions:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.thepowermall.com/oreganoproducts/faq.htm#1
">http://www.thepowermall.com/oreganoproducts/faq.htm#1
</a>
I am interested in giving OO a try it appears to be inavasive and worth a try but I have no clue how to get it and how much to take. I would like to try taking OO pills instead of inhaling- should I base it on age and or body weight?</end quote></div>
If you are hesitant to inhale the water soluble stuff (which is a concern I fully understand, and if I were on the outside lookin in, I might feel the same way), I recommend people use the regular stuff under their tongue daily. It gets absorbed into the blood stream quickly and acts upon bugs in the body. Pills are ok, but to me they are best if you have some digestive related bugs.
To me the effectiveness of OO concerning form to take it in regarding CF (1 = most effective, 3 = least) 1- inhaled water soluble, 2-regular under the tongue (sublingually), 3-pills. Any form benefits, but from my year of messing with it, that is what I have found to be most beneficial.
You can find the stuff cheapest on the internet (the brand I use anyways). I have no idea of the quality or the purity of other brands, hence why I don't advocate their use, especially for something as potentially harmful as inhalation (Not to mention I don't know of any other brands that offer water soluble forms anyways).
As for what to use the stuff with, the water soluble stuff can be used in any fluid, because it dissolves. If you plan on inhaling it via a nebulizer (like a pari neb), use a carrier fluid that is generally concerned to not be affected by adding things to it, like sterile water, albuterol, distilled water, etc. I personally do 5-7 drops (5 normally if I feel great, up to 7 if I might feel a tad sinusy or coughin a bit) in my normal albuterol when I wake up before my other neb, and again at night before my other two.
If you want to use it under the tongue, I recommend 3 (or more, you have to experiment to see what works best for you) 2-3 times a day depending on how you are doing with your CF at the time. You can either use it full time, or use it like we do some antibiotics, reactively, and stop when you feel ok.
As for pills, I forget what the bottle says, but it's a couple a day (I personally wouldn't bother).
Here is a FAQ that answers many other questions:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.thepowermall.com/oreganoproducts/faq.htm#1
">http://www.thepowermall.com/oreganoproducts/faq.htm#1
</a>