Ok, i'm new here, and i'll try and keep this as concise as possible and still get the information across that has extremely helped me (for the most part, I feel it has so far reversed a good deal of my CF symptoms), and I feel might be able to help other CF patients.
I am a 34 year old cystic man living in the Tampa FL area. I have been involved in the CF community (not so much since capacea hit the scene) for a long time, involved in CF summer camps, hung out with and kept in touch with other CF's from my area and the camps, knew them all, was also a councelor for a few years at the cf camps, etc. Out of the original 65 or 70 of us from that era (I started going to them when I was like 13 or so), there are about 3 of us left now, including myself. I am currently on disability (fathers social security), but due to my current change of events health wise, i'm seriously contemplating reentering the work force full time in the security industry.
I, like many CF's went through the same constant regimen of do all my meds as instructed and generally live a lifestyle thats conducive to good health, try not to get sick, get sick anyways, either be on home IV's pumped with antibiotics, or be in the hospital for 2 weeks or fewer. The end result was always that I'd feel clear for a few weeks to a couple months, and then of course be chunky again and much of my day was taken up with exercising and clearance to get rid of this toxic waste in my chest. The last time I had a flare up, it was much more than an exacerbation, I was apparently deathly ill. My lung capacity, which when healthy would normally be around 100%, sometimes more than 100%. This time my nose filled up, trickled into my chest, spread throughout my chest, my ears completely sealed up to the point I could barely hear, and my lung capacity went down to 50% (pretty dramatic drop when you are normally 100%).
I went into the hospital and went through the typical regimen, of basically being nuked with antibiotics, and constant use of the thairapy vest. I was released after 6 days because now, a 2 week stay unless you are literally about to die, is unheard of here, they want to make room for other patients I guess. Then 2 more weeks of IV therapy and oral antibiotics at home. I still couldnt get rid of what was in my chest, and then they told me i had "an unidentified organism in my culture". I was scared to death. I got home and was determined to get myself off this constant regimen of sick/nuke, sick/nuke, sick/nuke, maybe make resistant strains, rinse and repeat.
I was looking through all kinds of natural substances and supplements online and in scientific/hollistic periodicals and still didn't come up with much that appeared to be able to help my disease. Surprisingly my hippy sister asked me if i had ever heard of oil of oregano. I said no, and thought it was BS (apparently like many others do, and im sure some will here also). She told me it did this and that, and sounded like even more BS. I started to do my own research, and found out that it is considered the king of natural antimicrobials, and is an extremely strong antioxidant. I did more research. And more research. Trying to find the total BS factor that had to be hidden somewhere. I couldn't find anything besides strong testimonials from others with all types of health problems, and most importantly, actual clinical research and even patient trial research regarding this substance.
I found a brand that from what I know of, is the only brand that was involved in these actual studies, and appeared to be of very high quality. It is a VERY potent antimicrobial, including fungus, viruses, and of course whats most important to us, bacteria, including Pseydomonas aeruginosa. On top of that, i found out oregano oil is also 3 or 4 times stronger of an antioxidant than blueberry juice (thought to be one of the strongest).
I started taking the oil of oregano under my tongue, twice a day. Then in addition to that, I started nebulizing a few drops with my morning albuterol, and then my normal colistin. And then at night my regular battery of aerosols which include the typical albuterol, pulmozyme, and colistin. Followed by two gel capsules of oil of oregano before bed.
Let me also tell you, that I was told by my ENT that I should have nasal surgery the next time I got sick, so I was also on several drugs to try and keep my nasal area in good health. After a day or so I got very tired, which when I looked it up it said the reason for this was that the oil of oregano was killing off tons of bugs, yeast, fungus in my system and im filled with their remains. Within about 3 or 4 days I started to feel extremely better. What used to be cracks pops and wheezing while I slept was 100% gone (attested to by my fiancee), and within a week my lungs were 100% clear...Something that never took place before, because I would always have some form of crap to cough up, thick green crap.
I became a little excited about this, and posted it on one of the first CF forums I found @ http://www.cftrust.org.uk/scope/page/view.go?layout=cftrust&pageid=169 (a UK site, under the adult cystic forum)
I was met with high skepticism, and paranoia, mostly them thinking i had some self interest in the particular brand I was talking about, as in me trying to sell something. Just like them I can assure you I have no underlying purpose in this post or that post for personal gain, aside from trying to help others with a nasty disease, with something that might help them as it has helped me. I'm sure some won't believe this, but it's the truth.
Like I told the cystics in England, PLEASE do your own research, and consult your doctor before partaking in any form of supplement. Don't take my anecdotal results as the word of god, there are good deals of research out there dealing with oil of oregano, and even a second supplement i take monolaurin (similar properties to oregano oil), be skeptical all you want, but please do yourself a favor and turn that skepticism into healthy curiosity and DO YOUR OWN RESEARCH.
In my opinion, the problem with many doctors is that all they are taught to do, is deal with microbials with antibiotics, and we have way overused and abused them in this country and it disrupts our natural balance in our body, not to mention contributes to making very nasty resistant strains (ive seen atleast two CF's die in this way) that kick our butts.
All of the links I will link are cited research conducted by health care professionals, doctors, etc. One page in particular that has collected a very good deal of the research results in PDF form does have a personal interest in people buying their product (which was the one that was tested), so i'm stating that right now. It would be like if one company made penicilin, and they posted real truthful research of how penicilin kills bacteria on their website that sells penicilin.
Here is the product that I have been taking, again, no personal underlying or $$$ interest to me whatsoever which brand anyone takes if they decide to do so after they researched it themselves, and talked to their doctor about it, i'm just amazed at the substance in general, and think it can really act to either limit hospitalizations, increase the time between visits, or possibly all out get rid of hospitalizations by keeping the bacterial count way low in the cystics lungs:
(I take the Oreganol P74 liquid and gel caps) http://www.p-73.com/cdoreganol.htm
Here is a very good FAQ on Oreganol P73. I personally cross referenced all of their scientific research findings through the other sources, they are legit, but as i said, please do what I did, take 30 mins of your time, and do the same: http://www.thepowermall.com/oreganoproducts/faq.htm#1
Here is a link to the research page and periodical page of the company that makes Oregano P73. The research is all in PDF format, and you can read what particular research they were doing. On this page you will find in Vitro, In Vivo, and human studies showing the efficacy of oil of oregano on microbes. Please do yourself a favor and read through their findings. As stated before, in the FAQ link i provided, there is other research cited such as Georgetown university medical center, and other accredited organizations, please look into those also: http://www.p-73.com/cdresearch.htm
I have also been taking another antimicrobial supplement to accompany my daily oregano oil. I also have zero personal gain with regards to this product, the reason why I chose this product is because it was the only one I could find from a seemingly reputable company that in a 500mg capsule, all others I found via google were 300mg capsules, and the therapeutic doseage for monolaurin is like 1500-2800mg per day, so i didnt want to end up taking more than say 6 capsules daily (some concise information on the product is also on the link):
http://www.smartnutrition.info/info-monolaurin.htm
Also if you will notice, in a couple of the studies done in vitro from the link I provided, monolaurin and oregano oil were studied separately to determine how potent they were against microbes. They both did very well by themselves, sometimes as strong or stronger than many standard antibiotics. But when combined, against several organisms, their efficacy was dramatically increased. monolaurin is a monoglyceride that primarily comes from coconut oil, coconut products, and is found in breast milk (the good lord or nature's way of starting our children off strong with resistance to nasty bugs).
I have personally been taking 3 capsules of this monolaurin product with my first meal, and then 3 at night with a final snack for a total of 3000mg per day. Aside from my CF symptoms (lungs and sinuses in general) apparently reversing, my gout symptoms are gone as well. I like to partake in beer occasionally on weekends with some friends, and i suppose now that i'm an older cystic, the uric acid in beer wasn't metabolizing properly in my system anymore, which lead to gout. I had to take allopurinol and another gout drug to protect me from gout attacks, and I still always had a very tender/sore big left toe. Now, even after drinking some beer twice a week or so, I no longer even have a tender toe, period.
In summation, I know this was long, but I wanted to introduce myself and explain what I am using, and how am I using it, and explain my history with this horrible disease. As I have said many times, PLEASE do your own research, have some healthy skepticism. I'm only going from what has worked for me, and I just feel marvelous. I don't cough anymore, i'm clear as a bell (literally nothing there), my sleep at night isn't interupted by wheezing, cracking, and I no longer have a need for my thairapy vest (used to use it a few times a week). And I haven't had a lung bleed since i've been on this. The very few bits of mucous that I can bring up (maybe once or twice a week in very trace amounts) is very thin, and very light green. My nose also doesn't run like a waterfall when I wake up either.
A silver bullet against CF? Who knows. If you finally choose to start taking this as a supplement, it might have no effect on you, or it could do the same thing to you as it's been doing to me, which is making me feel great, and will finally allow me to return to work. Only a very long period of time will finally assure me that this is what is indeed responsible for my health now, but coming up on almost two months, I am still symptom free.
If anyone would like to talk to me in greater detail, my yahoo messenger name is faust227, and my email is viewable via my profile (though i get a ton of spam and might delete what you send me, not knowing its not spam)
Also I recommend taking a good quality probiotic formula to make sure your good flora stay healthy and in good quantity. While these two products have been shown to generally avoid the "good" bacteria in someones system (hail evolution), a good probiotic would generally make sure nothing goes wrong, and would help to ensure your digestive system stays healthy anyways, which is a large component of CF.
Remember regret is the most expensive thing of all. I'm sure if I could dig up a couple of my CF friends who i've lost, set the clock back 10 years or so so they still have lung function, and offered them the possibility that something might help keep their bugs down, they would jump at the chance. One last time, do your own research, and talk to your doctor. But due to doctors only relying on antibiotics to take care of everything, they might automatically call it BS (unless you are lucky and have a doctor who is aware of what many natural substances can do). A great quote that makes me think of doctors "If all you have in your tool box is a hammer, everything starts to look like nails".
My personal info: 34, 5'11, 205 lbs. Last check (not since using these substances) had two different strains of PA, one was resistant to tobramycin. The doc has genotyped me and told me I have two mutations with regards to my CF gene. I've always been very active growing up, and for a long time now have always taken general supplements to help my CF. I've been into lifting weights and exercise for a long time now. I was very sickly in my teens (almost died twice), but leveled out in my 20's. In my 20's I went through a large irresponsible phase of heavy drinking, and partying in general that took its toll on me. I now try and stay out of smoky places, and while i'm not a germ freak, I am aware of microbes in general. I wasn't able to shake the crap I still had in my chest after my last hospitalization till i started to nebulize this substance.
Take care, stay healthy, and I look to post here more often. And I'll answer any questions relating to my use of this substance that anyone has.
I am a 34 year old cystic man living in the Tampa FL area. I have been involved in the CF community (not so much since capacea hit the scene) for a long time, involved in CF summer camps, hung out with and kept in touch with other CF's from my area and the camps, knew them all, was also a councelor for a few years at the cf camps, etc. Out of the original 65 or 70 of us from that era (I started going to them when I was like 13 or so), there are about 3 of us left now, including myself. I am currently on disability (fathers social security), but due to my current change of events health wise, i'm seriously contemplating reentering the work force full time in the security industry.
I, like many CF's went through the same constant regimen of do all my meds as instructed and generally live a lifestyle thats conducive to good health, try not to get sick, get sick anyways, either be on home IV's pumped with antibiotics, or be in the hospital for 2 weeks or fewer. The end result was always that I'd feel clear for a few weeks to a couple months, and then of course be chunky again and much of my day was taken up with exercising and clearance to get rid of this toxic waste in my chest. The last time I had a flare up, it was much more than an exacerbation, I was apparently deathly ill. My lung capacity, which when healthy would normally be around 100%, sometimes more than 100%. This time my nose filled up, trickled into my chest, spread throughout my chest, my ears completely sealed up to the point I could barely hear, and my lung capacity went down to 50% (pretty dramatic drop when you are normally 100%).
I went into the hospital and went through the typical regimen, of basically being nuked with antibiotics, and constant use of the thairapy vest. I was released after 6 days because now, a 2 week stay unless you are literally about to die, is unheard of here, they want to make room for other patients I guess. Then 2 more weeks of IV therapy and oral antibiotics at home. I still couldnt get rid of what was in my chest, and then they told me i had "an unidentified organism in my culture". I was scared to death. I got home and was determined to get myself off this constant regimen of sick/nuke, sick/nuke, sick/nuke, maybe make resistant strains, rinse and repeat.
I was looking through all kinds of natural substances and supplements online and in scientific/hollistic periodicals and still didn't come up with much that appeared to be able to help my disease. Surprisingly my hippy sister asked me if i had ever heard of oil of oregano. I said no, and thought it was BS (apparently like many others do, and im sure some will here also). She told me it did this and that, and sounded like even more BS. I started to do my own research, and found out that it is considered the king of natural antimicrobials, and is an extremely strong antioxidant. I did more research. And more research. Trying to find the total BS factor that had to be hidden somewhere. I couldn't find anything besides strong testimonials from others with all types of health problems, and most importantly, actual clinical research and even patient trial research regarding this substance.
I found a brand that from what I know of, is the only brand that was involved in these actual studies, and appeared to be of very high quality. It is a VERY potent antimicrobial, including fungus, viruses, and of course whats most important to us, bacteria, including Pseydomonas aeruginosa. On top of that, i found out oregano oil is also 3 or 4 times stronger of an antioxidant than blueberry juice (thought to be one of the strongest).
I started taking the oil of oregano under my tongue, twice a day. Then in addition to that, I started nebulizing a few drops with my morning albuterol, and then my normal colistin. And then at night my regular battery of aerosols which include the typical albuterol, pulmozyme, and colistin. Followed by two gel capsules of oil of oregano before bed.
Let me also tell you, that I was told by my ENT that I should have nasal surgery the next time I got sick, so I was also on several drugs to try and keep my nasal area in good health. After a day or so I got very tired, which when I looked it up it said the reason for this was that the oil of oregano was killing off tons of bugs, yeast, fungus in my system and im filled with their remains. Within about 3 or 4 days I started to feel extremely better. What used to be cracks pops and wheezing while I slept was 100% gone (attested to by my fiancee), and within a week my lungs were 100% clear...Something that never took place before, because I would always have some form of crap to cough up, thick green crap.
I became a little excited about this, and posted it on one of the first CF forums I found @ http://www.cftrust.org.uk/scope/page/view.go?layout=cftrust&pageid=169 (a UK site, under the adult cystic forum)
I was met with high skepticism, and paranoia, mostly them thinking i had some self interest in the particular brand I was talking about, as in me trying to sell something. Just like them I can assure you I have no underlying purpose in this post or that post for personal gain, aside from trying to help others with a nasty disease, with something that might help them as it has helped me. I'm sure some won't believe this, but it's the truth.
Like I told the cystics in England, PLEASE do your own research, and consult your doctor before partaking in any form of supplement. Don't take my anecdotal results as the word of god, there are good deals of research out there dealing with oil of oregano, and even a second supplement i take monolaurin (similar properties to oregano oil), be skeptical all you want, but please do yourself a favor and turn that skepticism into healthy curiosity and DO YOUR OWN RESEARCH.
In my opinion, the problem with many doctors is that all they are taught to do, is deal with microbials with antibiotics, and we have way overused and abused them in this country and it disrupts our natural balance in our body, not to mention contributes to making very nasty resistant strains (ive seen atleast two CF's die in this way) that kick our butts.
All of the links I will link are cited research conducted by health care professionals, doctors, etc. One page in particular that has collected a very good deal of the research results in PDF form does have a personal interest in people buying their product (which was the one that was tested), so i'm stating that right now. It would be like if one company made penicilin, and they posted real truthful research of how penicilin kills bacteria on their website that sells penicilin.
Here is the product that I have been taking, again, no personal underlying or $$$ interest to me whatsoever which brand anyone takes if they decide to do so after they researched it themselves, and talked to their doctor about it, i'm just amazed at the substance in general, and think it can really act to either limit hospitalizations, increase the time between visits, or possibly all out get rid of hospitalizations by keeping the bacterial count way low in the cystics lungs:
(I take the Oreganol P74 liquid and gel caps) http://www.p-73.com/cdoreganol.htm
Here is a very good FAQ on Oreganol P73. I personally cross referenced all of their scientific research findings through the other sources, they are legit, but as i said, please do what I did, take 30 mins of your time, and do the same: http://www.thepowermall.com/oreganoproducts/faq.htm#1
Here is a link to the research page and periodical page of the company that makes Oregano P73. The research is all in PDF format, and you can read what particular research they were doing. On this page you will find in Vitro, In Vivo, and human studies showing the efficacy of oil of oregano on microbes. Please do yourself a favor and read through their findings. As stated before, in the FAQ link i provided, there is other research cited such as Georgetown university medical center, and other accredited organizations, please look into those also: http://www.p-73.com/cdresearch.htm
I have also been taking another antimicrobial supplement to accompany my daily oregano oil. I also have zero personal gain with regards to this product, the reason why I chose this product is because it was the only one I could find from a seemingly reputable company that in a 500mg capsule, all others I found via google were 300mg capsules, and the therapeutic doseage for monolaurin is like 1500-2800mg per day, so i didnt want to end up taking more than say 6 capsules daily (some concise information on the product is also on the link):
http://www.smartnutrition.info/info-monolaurin.htm
Also if you will notice, in a couple of the studies done in vitro from the link I provided, monolaurin and oregano oil were studied separately to determine how potent they were against microbes. They both did very well by themselves, sometimes as strong or stronger than many standard antibiotics. But when combined, against several organisms, their efficacy was dramatically increased. monolaurin is a monoglyceride that primarily comes from coconut oil, coconut products, and is found in breast milk (the good lord or nature's way of starting our children off strong with resistance to nasty bugs).
I have personally been taking 3 capsules of this monolaurin product with my first meal, and then 3 at night with a final snack for a total of 3000mg per day. Aside from my CF symptoms (lungs and sinuses in general) apparently reversing, my gout symptoms are gone as well. I like to partake in beer occasionally on weekends with some friends, and i suppose now that i'm an older cystic, the uric acid in beer wasn't metabolizing properly in my system anymore, which lead to gout. I had to take allopurinol and another gout drug to protect me from gout attacks, and I still always had a very tender/sore big left toe. Now, even after drinking some beer twice a week or so, I no longer even have a tender toe, period.
In summation, I know this was long, but I wanted to introduce myself and explain what I am using, and how am I using it, and explain my history with this horrible disease. As I have said many times, PLEASE do your own research, have some healthy skepticism. I'm only going from what has worked for me, and I just feel marvelous. I don't cough anymore, i'm clear as a bell (literally nothing there), my sleep at night isn't interupted by wheezing, cracking, and I no longer have a need for my thairapy vest (used to use it a few times a week). And I haven't had a lung bleed since i've been on this. The very few bits of mucous that I can bring up (maybe once or twice a week in very trace amounts) is very thin, and very light green. My nose also doesn't run like a waterfall when I wake up either.
A silver bullet against CF? Who knows. If you finally choose to start taking this as a supplement, it might have no effect on you, or it could do the same thing to you as it's been doing to me, which is making me feel great, and will finally allow me to return to work. Only a very long period of time will finally assure me that this is what is indeed responsible for my health now, but coming up on almost two months, I am still symptom free.
If anyone would like to talk to me in greater detail, my yahoo messenger name is faust227, and my email is viewable via my profile (though i get a ton of spam and might delete what you send me, not knowing its not spam)
Also I recommend taking a good quality probiotic formula to make sure your good flora stay healthy and in good quantity. While these two products have been shown to generally avoid the "good" bacteria in someones system (hail evolution), a good probiotic would generally make sure nothing goes wrong, and would help to ensure your digestive system stays healthy anyways, which is a large component of CF.
Remember regret is the most expensive thing of all. I'm sure if I could dig up a couple of my CF friends who i've lost, set the clock back 10 years or so so they still have lung function, and offered them the possibility that something might help keep their bugs down, they would jump at the chance. One last time, do your own research, and talk to your doctor. But due to doctors only relying on antibiotics to take care of everything, they might automatically call it BS (unless you are lucky and have a doctor who is aware of what many natural substances can do). A great quote that makes me think of doctors "If all you have in your tool box is a hammer, everything starts to look like nails".
My personal info: 34, 5'11, 205 lbs. Last check (not since using these substances) had two different strains of PA, one was resistant to tobramycin. The doc has genotyped me and told me I have two mutations with regards to my CF gene. I've always been very active growing up, and for a long time now have always taken general supplements to help my CF. I've been into lifting weights and exercise for a long time now. I was very sickly in my teens (almost died twice), but leveled out in my 20's. In my 20's I went through a large irresponsible phase of heavy drinking, and partying in general that took its toll on me. I now try and stay out of smoky places, and while i'm not a germ freak, I am aware of microbes in general. I wasn't able to shake the crap I still had in my chest after my last hospitalization till i started to nebulize this substance.
Take care, stay healthy, and I look to post here more often. And I'll answer any questions relating to my use of this substance that anyone has.