Ever wonder.....?

[mom2lillian]

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

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!



I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.



The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.



I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!



I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.



It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?



Hence my curiosity about long term use of CF meds.</end quote></div>

Kat--with a 45% lung function how can it be that your care team and/or you feel that you dont need to be doing any preventative treatments? Even if you were to demonize medication--then at least physio, what is the reasons for not doing this? It cant be said that you dont need it because, well your PFT's are very severely affected so no matter how you feel you are loosing ground.

Also, as you said not taking meds and still remaining where you are is NOT normal so thus the ? answers itself we need the meds. We need only to look at the progression overall of life expectancy as more medications have been introduced or to that of USA and some countries that take meds compared to those that dont have access to them all to see the answer.

I definately am not doubting that the meds can have severe side effects but in most cases it is the lesser of two evils, in my opinion. Though I also am a big believer in life style effects upon the body and try to balance both western and eastern views. I think healthy living, excercise, and good nutrition are essential and long overlooked in CF care.

Either way I am glad that you feel so well with your healht and are able to lead a full life, I hope it will continue on for a long time. I think there was anotehr thread around recently compairing how different poeple cope with different lung functions, thi smight be interesting to check out as well.

take care

 

[mom2lillian]

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

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!



I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.



The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.



I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!



I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.



It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?



Hence my curiosity about long term use of CF meds.</end quote></div>

Kat--with a 45% lung function how can it be that your care team and/or you feel that you dont need to be doing any preventative treatments? Even if you were to demonize medication--then at least physio, what is the reasons for not doing this? It cant be said that you dont need it because, well your PFT's are very severely affected so no matter how you feel you are loosing ground.

Also, as you said not taking meds and still remaining where you are is NOT normal so thus the ? answers itself we need the meds. We need only to look at the progression overall of life expectancy as more medications have been introduced or to that of USA and some countries that take meds compared to those that dont have access to them all to see the answer.

I definately am not doubting that the meds can have severe side effects but in most cases it is the lesser of two evils, in my opinion. Though I also am a big believer in life style effects upon the body and try to balance both western and eastern views. I think healthy living, excercise, and good nutrition are essential and long overlooked in CF care.

Either way I am glad that you feel so well with your healht and are able to lead a full life, I hope it will continue on for a long time. I think there was anotehr thread around recently compairing how different poeple cope with different lung functions, thi smight be interesting to check out as well.

take care

 

[mom2lillian]

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

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!



I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.



The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.



I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!



I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.



It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?



Hence my curiosity about long term use of CF meds.</end quote></div>

Kat--with a 45% lung function how can it be that your care team and/or you feel that you dont need to be doing any preventative treatments? Even if you were to demonize medication--then at least physio, what is the reasons for not doing this? It cant be said that you dont need it because, well your PFT's are very severely affected so no matter how you feel you are loosing ground.

Also, as you said not taking meds and still remaining where you are is NOT normal so thus the ? answers itself we need the meds. We need only to look at the progression overall of life expectancy as more medications have been introduced or to that of USA and some countries that take meds compared to those that dont have access to them all to see the answer.

I definately am not doubting that the meds can have severe side effects but in most cases it is the lesser of two evils, in my opinion. Though I also am a big believer in life style effects upon the body and try to balance both western and eastern views. I think healthy living, excercise, and good nutrition are essential and long overlooked in CF care.

Either way I am glad that you feel so well with your healht and are able to lead a full life, I hope it will continue on for a long time. I think there was anotehr thread around recently compairing how different poeple cope with different lung functions, thi smight be interesting to check out as well.

take care

 

[mom2lillian]

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

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!



I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.



The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.



I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!



I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.



It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?



Hence my curiosity about long term use of CF meds.</end quote>

Kat--with a 45% lung function how can it be that your care team and/or you feel that you dont need to be doing any preventative treatments? Even if you were to demonize medication--then at least physio, what is the reasons for not doing this? It cant be said that you dont need it because, well your PFT's are very severely affected so no matter how you feel you are loosing ground.

Also, as you said not taking meds and still remaining where you are is NOT normal so thus the ? answers itself we need the meds. We need only to look at the progression overall of life expectancy as more medications have been introduced or to that of USA and some countries that take meds compared to those that dont have access to them all to see the answer.

I definately am not doubting that the meds can have severe side effects but in most cases it is the lesser of two evils, in my opinion. Though I also am a big believer in life style effects upon the body and try to balance both western and eastern views. I think healthy living, excercise, and good nutrition are essential and long overlooked in CF care.

Either way I am glad that you feel so well with your healht and are able to lead a full life, I hope it will continue on for a long time. I think there was anotehr thread around recently compairing how different poeple cope with different lung functions, thi smight be interesting to check out as well.

take care

 

[mom2lillian]

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

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!



I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.



The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.



I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!



I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.



It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?



Hence my curiosity about long term use of CF meds.</end quote>

Kat--with a 45% lung function how can it be that your care team and/or you feel that you dont need to be doing any preventative treatments? Even if you were to demonize medication--then at least physio, what is the reasons for not doing this? It cant be said that you dont need it because, well your PFT's are very severely affected so no matter how you feel you are loosing ground.

Also, as you said not taking meds and still remaining where you are is NOT normal so thus the ? answers itself we need the meds. We need only to look at the progression overall of life expectancy as more medications have been introduced or to that of USA and some countries that take meds compared to those that dont have access to them all to see the answer.

I definately am not doubting that the meds can have severe side effects but in most cases it is the lesser of two evils, in my opinion. Though I also am a big believer in life style effects upon the body and try to balance both western and eastern views. I think healthy living, excercise, and good nutrition are essential and long overlooked in CF care.

Either way I am glad that you feel so well with your healht and are able to lead a full life, I hope it will continue on for a long time. I think there was anotehr thread around recently compairing how different poeple cope with different lung functions, thi smight be interesting to check out as well.

take care

 

[Ender]

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

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!



I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.



The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.



I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!



I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.



It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?



Hence my curiosity about long term use of CF meds.</end quote></div>

Hey, we are similar you and me. I ask myself that same question a lot of times too....why is it that i can abuse my freaking body sooo much, and be relatively healthy, and some people do EVERYTHING possible, and just get worse? It's so annoying. The only answer i can think of is modifier genes. Maybe we just repair a bit better, deal differently with infection....I dunno.

I am with Sean though. This is a disease of inflammation. The conditions listed by the original poster seem quite cf related to me (and a result of some of the wonderful meds we take).

Medicine in the western world is so skewed sometimes. We treat it only when it becomes symptomatic. We wait and we wait until we catch that bad bug, until our inflammation has given rise to diabetes, joint pain, fatigue, infections etc. Any alternative meds are considered "untested"....and aren't approved by the FDA. Everything i have researched and tried came from MY reading, MY searching. WHo's the doctor??

It's ridiculous. If this disease is as severe as the freaking CFF thinks it is, why not endorse some other alternative ideas? NAC, DHA, GSH, arganine, probiotics...why aren't these mainstream from the start? God if only my parents had been a bit more vigilant with this disease, and tried me on some of these things.

Jessi, if you feel like this now, then do something NOW to try and reverse it. Don't wait for the doctors to figure it out....because they won't. Doctors do have their place in this disease, I love my doctors, but it's our bodies too. If you are feeling bad, and doctors aren't giving any relief, then search for your own. You owe it to yourself.

 

[Ender]

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

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!



I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.



The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.



I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!



I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.



It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?



Hence my curiosity about long term use of CF meds.</end quote></div>

Hey, we are similar you and me. I ask myself that same question a lot of times too....why is it that i can abuse my freaking body sooo much, and be relatively healthy, and some people do EVERYTHING possible, and just get worse? It's so annoying. The only answer i can think of is modifier genes. Maybe we just repair a bit better, deal differently with infection....I dunno.

I am with Sean though. This is a disease of inflammation. The conditions listed by the original poster seem quite cf related to me (and a result of some of the wonderful meds we take).

Medicine in the western world is so skewed sometimes. We treat it only when it becomes symptomatic. We wait and we wait until we catch that bad bug, until our inflammation has given rise to diabetes, joint pain, fatigue, infections etc. Any alternative meds are considered "untested"....and aren't approved by the FDA. Everything i have researched and tried came from MY reading, MY searching. WHo's the doctor??

It's ridiculous. If this disease is as severe as the freaking CFF thinks it is, why not endorse some other alternative ideas? NAC, DHA, GSH, arganine, probiotics...why aren't these mainstream from the start? God if only my parents had been a bit more vigilant with this disease, and tried me on some of these things.

Jessi, if you feel like this now, then do something NOW to try and reverse it. Don't wait for the doctors to figure it out....because they won't. Doctors do have their place in this disease, I love my doctors, but it's our bodies too. If you are feeling bad, and doctors aren't giving any relief, then search for your own. You owe it to yourself.

 

[Ender]

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

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!



I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.



The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.



I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!



I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.



It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?



Hence my curiosity about long term use of CF meds.</end quote></div>

Hey, we are similar you and me. I ask myself that same question a lot of times too....why is it that i can abuse my freaking body sooo much, and be relatively healthy, and some people do EVERYTHING possible, and just get worse? It's so annoying. The only answer i can think of is modifier genes. Maybe we just repair a bit better, deal differently with infection....I dunno.

I am with Sean though. This is a disease of inflammation. The conditions listed by the original poster seem quite cf related to me (and a result of some of the wonderful meds we take).

Medicine in the western world is so skewed sometimes. We treat it only when it becomes symptomatic. We wait and we wait until we catch that bad bug, until our inflammation has given rise to diabetes, joint pain, fatigue, infections etc. Any alternative meds are considered "untested"....and aren't approved by the FDA. Everything i have researched and tried came from MY reading, MY searching. WHo's the doctor??

It's ridiculous. If this disease is as severe as the freaking CFF thinks it is, why not endorse some other alternative ideas? NAC, DHA, GSH, arganine, probiotics...why aren't these mainstream from the start? God if only my parents had been a bit more vigilant with this disease, and tried me on some of these things.

Jessi, if you feel like this now, then do something NOW to try and reverse it. Don't wait for the doctors to figure it out....because they won't. Doctors do have their place in this disease, I love my doctors, but it's our bodies too. If you are feeling bad, and doctors aren't giving any relief, then search for your own. You owe it to yourself.

 

[Ender]

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

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!



I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.



The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.



I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!



I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.



It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?



Hence my curiosity about long term use of CF meds.</end quote>

Hey, we are similar you and me. I ask myself that same question a lot of times too....why is it that i can abuse my freaking body sooo much, and be relatively healthy, and some people do EVERYTHING possible, and just get worse? It's so annoying. The only answer i can think of is modifier genes. Maybe we just repair a bit better, deal differently with infection....I dunno.

I am with Sean though. This is a disease of inflammation. The conditions listed by the original poster seem quite cf related to me (and a result of some of the wonderful meds we take).

Medicine in the western world is so skewed sometimes. We treat it only when it becomes symptomatic. We wait and we wait until we catch that bad bug, until our inflammation has given rise to diabetes, joint pain, fatigue, infections etc. Any alternative meds are considered "untested"....and aren't approved by the FDA. Everything i have researched and tried came from MY reading, MY searching. WHo's the doctor??

It's ridiculous. If this disease is as severe as the freaking CFF thinks it is, why not endorse some other alternative ideas? NAC, DHA, GSH, arganine, probiotics...why aren't these mainstream from the start? God if only my parents had been a bit more vigilant with this disease, and tried me on some of these things.

Jessi, if you feel like this now, then do something NOW to try and reverse it. Don't wait for the doctors to figure it out....because they won't. Doctors do have their place in this disease, I love my doctors, but it's our bodies too. If you are feeling bad, and doctors aren't giving any relief, then search for your own. You owe it to yourself.

 

[Ender]

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

GRRR, sorry, i forgot to add the most important part of my story and the main source of my confusion - duh!!



I am NOT a mild case - my lung function is only 45% on a good day, has been as low as 36%.



The doctors are as confused as I am. When i had my first round of IVs they thought i was some sort of 'miracle' case because i APPEARED to be so unaffected - then they tested my lung function and mucus - suddenly their smiles turned to frowns.



I'm no miracle - 36% lung function with mucoid pseudomonas AND cepacia!!



I hope now you can see where i'm coming from. My lungs are scarred to all hell and i have some very nasty bugs - BUT - i still suffer from virtually no real ill health apart from the odd (quite mild) chest infection.



It just doesnt make any sense to me and i hate unsolved puzzles!!! What am i doing/not doing that is making me such a strange case?



Hence my curiosity about long term use of CF meds.</end quote>

Hey, we are similar you and me. I ask myself that same question a lot of times too....why is it that i can abuse my freaking body sooo much, and be relatively healthy, and some people do EVERYTHING possible, and just get worse? It's so annoying. The only answer i can think of is modifier genes. Maybe we just repair a bit better, deal differently with infection....I dunno.

I am with Sean though. This is a disease of inflammation. The conditions listed by the original poster seem quite cf related to me (and a result of some of the wonderful meds we take).

Medicine in the western world is so skewed sometimes. We treat it only when it becomes symptomatic. We wait and we wait until we catch that bad bug, until our inflammation has given rise to diabetes, joint pain, fatigue, infections etc. Any alternative meds are considered "untested"....and aren't approved by the FDA. Everything i have researched and tried came from MY reading, MY searching. WHo's the doctor??

It's ridiculous. If this disease is as severe as the freaking CFF thinks it is, why not endorse some other alternative ideas? NAC, DHA, GSH, arganine, probiotics...why aren't these mainstream from the start? God if only my parents had been a bit more vigilant with this disease, and tried me on some of these things.

Jessi, if you feel like this now, then do something NOW to try and reverse it. Don't wait for the doctors to figure it out....because they won't. Doctors do have their place in this disease, I love my doctors, but it's our bodies too. If you are feeling bad, and doctors aren't giving any relief, then search for your own. You owe it to yourself.

 

[Faust]

Yes you can bring on some of the listed symptoms from using many different drugs. Chemicals of all kinds (including drugs, supplements, etc...Cause everything is basically just chemical components in various forms) can and do have synergistic effects upon each other. As an example, Bioperine: <a target=_blank class=ftalternatingbarlinklarge href="http://www.bioperine.com/">http://www.bioperine.com/</a> is a derivitave from pepper, and it can increase medications strength/absorption in the body by 2000% or more (hence why it is often combined with supplements that are notorious to be very malabsorbing, like curcumin). Green tea and another supplement (forget at this moment) have a MASSIVE synergistic effect that increases their effectiveness by a crapload (my new OMG form of measurement btw). It gets even more confusing and possibly dangerous when it comes to perscription drugs. Many chemicals don't like each other, or like each other too much. Many of those chemicals are used in pharmaceuticals, food additives, colorings, etc etc. It's impossible to keep tracks on every possible unwanted chemically synergistic reaction, but most of the real undesirable ones are known by chemists/pharmacists and, and hence our warning labels on medication. It all boils down to risk vs reward. If you get a huge quality of life boost from taking steroids, and you have tried to go off them in the past and tried a less dangerous, possibly natural alternative that is known to work in the same way for the same problems, and you feel like crap, stick with the steroids. Same goes for anything chemically speaking. I personally avoid IV's and resistance causing antibiotics at all cost unless I absolutely have to. For the most part, avoiding them has been good for me. I have 3 bugs, all EXTREMELY weak to everything. I try my best to keep my bugs and general body chemistry in check naturally, so when something real mean does drop down on me, I know nearly everything out there will work on my stuff. Also (and i'm not condemning, again if it works for you go for it), a constant sick/nuke/sick/nuke/sick/nuke antibiotic cycle wreaks havoc on your natural bodies natural bacteria, and 90% of the bodies immune system and other important bodily functions (vitamin production, etc) are regulated in the intestines, and when we nuke with antibiotics, tons of the good guys die as well. To me, I view antibiotics as a last resort when all other attempts have failed. You can take tons of probiotics (always a good choice anyways for us), but I'd rather not destroy a whole helpful ecosystem and then try to rebuilt it.

 

[Faust]

Yes you can bring on some of the listed symptoms from using many different drugs. Chemicals of all kinds (including drugs, supplements, etc...Cause everything is basically just chemical components in various forms) can and do have synergistic effects upon each other. As an example, Bioperine: <a target=_blank class=ftalternatingbarlinklarge href="http://www.bioperine.com/">http://www.bioperine.com/</a> is a derivitave from pepper, and it can increase medications strength/absorption in the body by 2000% or more (hence why it is often combined with supplements that are notorious to be very malabsorbing, like curcumin). Green tea and another supplement (forget at this moment) have a MASSIVE synergistic effect that increases their effectiveness by a crapload (my new OMG form of measurement btw). It gets even more confusing and possibly dangerous when it comes to perscription drugs. Many chemicals don't like each other, or like each other too much. Many of those chemicals are used in pharmaceuticals, food additives, colorings, etc etc. It's impossible to keep tracks on every possible unwanted chemically synergistic reaction, but most of the real undesirable ones are known by chemists/pharmacists and, and hence our warning labels on medication. It all boils down to risk vs reward. If you get a huge quality of life boost from taking steroids, and you have tried to go off them in the past and tried a less dangerous, possibly natural alternative that is known to work in the same way for the same problems, and you feel like crap, stick with the steroids. Same goes for anything chemically speaking. I personally avoid IV's and resistance causing antibiotics at all cost unless I absolutely have to. For the most part, avoiding them has been good for me. I have 3 bugs, all EXTREMELY weak to everything. I try my best to keep my bugs and general body chemistry in check naturally, so when something real mean does drop down on me, I know nearly everything out there will work on my stuff. Also (and i'm not condemning, again if it works for you go for it), a constant sick/nuke/sick/nuke/sick/nuke antibiotic cycle wreaks havoc on your natural bodies natural bacteria, and 90% of the bodies immune system and other important bodily functions (vitamin production, etc) are regulated in the intestines, and when we nuke with antibiotics, tons of the good guys die as well. To me, I view antibiotics as a last resort when all other attempts have failed. You can take tons of probiotics (always a good choice anyways for us), but I'd rather not destroy a whole helpful ecosystem and then try to rebuilt it.

 

[Faust]

Yes you can bring on some of the listed symptoms from using many different drugs. Chemicals of all kinds (including drugs, supplements, etc...Cause everything is basically just chemical components in various forms) can and do have synergistic effects upon each other. As an example, Bioperine: <a target=_blank class=ftalternatingbarlinklarge href="http://www.bioperine.com/">http://www.bioperine.com/</a> is a derivitave from pepper, and it can increase medications strength/absorption in the body by 2000% or more (hence why it is often combined with supplements that are notorious to be very malabsorbing, like curcumin). Green tea and another supplement (forget at this moment) have a MASSIVE synergistic effect that increases their effectiveness by a crapload (my new OMG form of measurement btw). It gets even more confusing and possibly dangerous when it comes to perscription drugs. Many chemicals don't like each other, or like each other too much. Many of those chemicals are used in pharmaceuticals, food additives, colorings, etc etc. It's impossible to keep tracks on every possible unwanted chemically synergistic reaction, but most of the real undesirable ones are known by chemists/pharmacists and, and hence our warning labels on medication. It all boils down to risk vs reward. If you get a huge quality of life boost from taking steroids, and you have tried to go off them in the past and tried a less dangerous, possibly natural alternative that is known to work in the same way for the same problems, and you feel like crap, stick with the steroids. Same goes for anything chemically speaking. I personally avoid IV's and resistance causing antibiotics at all cost unless I absolutely have to. For the most part, avoiding them has been good for me. I have 3 bugs, all EXTREMELY weak to everything. I try my best to keep my bugs and general body chemistry in check naturally, so when something real mean does drop down on me, I know nearly everything out there will work on my stuff. Also (and i'm not condemning, again if it works for you go for it), a constant sick/nuke/sick/nuke/sick/nuke antibiotic cycle wreaks havoc on your natural bodies natural bacteria, and 90% of the bodies immune system and other important bodily functions (vitamin production, etc) are regulated in the intestines, and when we nuke with antibiotics, tons of the good guys die as well. To me, I view antibiotics as a last resort when all other attempts have failed. You can take tons of probiotics (always a good choice anyways for us), but I'd rather not destroy a whole helpful ecosystem and then try to rebuilt it.

 

[Faust]

Yes you can bring on some of the listed symptoms from using many different drugs. Chemicals of all kinds (including drugs, supplements, etc...Cause everything is basically just chemical components in various forms) can and do have synergistic effects upon each other. As an example, Bioperine: <a target=_blank class=ftalternatingbarlinklarge href="http://www.bioperine.com/">http://www.bioperine.com/</a> is a derivitave from pepper, and it can increase medications strength/absorption in the body by 2000% or more (hence why it is often combined with supplements that are notorious to be very malabsorbing, like curcumin). Green tea and another supplement (forget at this moment) have a MASSIVE synergistic effect that increases their effectiveness by a crapload (my new OMG form of measurement btw). It gets even more confusing and possibly dangerous when it comes to perscription drugs. Many chemicals don't like each other, or like each other too much. Many of those chemicals are used in pharmaceuticals, food additives, colorings, etc etc. It's impossible to keep tracks on every possible unwanted chemically synergistic reaction, but most of the real undesirable ones are known by chemists/pharmacists and, and hence our warning labels on medication. It all boils down to risk vs reward. If you get a huge quality of life boost from taking steroids, and you have tried to go off them in the past and tried a less dangerous, possibly natural alternative that is known to work in the same way for the same problems, and you feel like crap, stick with the steroids. Same goes for anything chemically speaking. I personally avoid IV's and resistance causing antibiotics at all cost unless I absolutely have to. For the most part, avoiding them has been good for me. I have 3 bugs, all EXTREMELY weak to everything. I try my best to keep my bugs and general body chemistry in check naturally, so when something real mean does drop down on me, I know nearly everything out there will work on my stuff. Also (and i'm not condemning, again if it works for you go for it), a constant sick/nuke/sick/nuke/sick/nuke antibiotic cycle wreaks havoc on your natural bodies natural bacteria, and 90% of the bodies immune system and other important bodily functions (vitamin production, etc) are regulated in the intestines, and when we nuke with antibiotics, tons of the good guys die as well. To me, I view antibiotics as a last resort when all other attempts have failed. You can take tons of probiotics (always a good choice anyways for us), but I'd rather not destroy a whole helpful ecosystem and then try to rebuilt it.

 

[Faust]

Yes you can bring on some of the listed symptoms from using many different drugs. Chemicals of all kinds (including drugs, supplements, etc...Cause everything is basically just chemical components in various forms) can and do have synergistic effects upon each other. As an example, Bioperine: <a target=_blank class=ftalternatingbarlinklarge href="http://www.bioperine.com/">http://www.bioperine.com/</a> is a derivitave from pepper, and it can increase medications strength/absorption in the body by 2000% or more (hence why it is often combined with supplements that are notorious to be very malabsorbing, like curcumin). Green tea and another supplement (forget at this moment) have a MASSIVE synergistic effect that increases their effectiveness by a crapload (my new OMG form of measurement btw). It gets even more confusing and possibly dangerous when it comes to perscription drugs. Many chemicals don't like each other, or like each other too much. Many of those chemicals are used in pharmaceuticals, food additives, colorings, etc etc. It's impossible to keep tracks on every possible unwanted chemically synergistic reaction, but most of the real undesirable ones are known by chemists/pharmacists and, and hence our warning labels on medication. It all boils down to risk vs reward. If you get a huge quality of life boost from taking steroids, and you have tried to go off them in the past and tried a less dangerous, possibly natural alternative that is known to work in the same way for the same problems, and you feel like crap, stick with the steroids. Same goes for anything chemically speaking. I personally avoid IV's and resistance causing antibiotics at all cost unless I absolutely have to. For the most part, avoiding them has been good for me. I have 3 bugs, all EXTREMELY weak to everything. I try my best to keep my bugs and general body chemistry in check naturally, so when something real mean does drop down on me, I know nearly everything out there will work on my stuff. Also (and i'm not condemning, again if it works for you go for it), a constant sick/nuke/sick/nuke/sick/nuke antibiotic cycle wreaks havoc on your natural bodies natural bacteria, and 90% of the bodies immune system and other important bodily functions (vitamin production, etc) are regulated in the intestines, and when we nuke with antibiotics, tons of the good guys die as well. To me, I view antibiotics as a last resort when all other attempts have failed. You can take tons of probiotics (always a good choice anyways for us), but I'd rather not destroy a whole helpful ecosystem and then try to rebuilt it.

 

[KrazyKat]

Thanks everybody, it's good to hear differing opinions and methods of 'coping' with our illness. Our docs are fairly backwards over here as far as all the new treatments are concerned - we are never involved in testing over here and like Ender, i rely on my own knowledge more than the docs. My doctor actually said to me at my last visit (as i explained to her why i wanted Azithromycin and what doseage she needed to prescribe me) 'kat does it bother you that you know more about your illness than i do?" lol
I replied 'no it doesnt, i am my only patient, whereas you have hundreds and you listen to me with an open mind and are responsive, that's all i can ever ask of you and is more than any other doctor has ever done for me'. I felt sorry for her,she is lovely and not a CF specialist, just a respiratory doc!! Now, as i find out stuff through this forum, i tell her and send her research results etc. She laughs about it, but appreciates that i have more time to focus on this than she does.

Sean and Ender, you two were probably the catalyst for me as far as supplements and natural remedies are concerned - i was already inhaling various herbs through a facial sauna when you guys put me on to Oregano Oil, which i still take to this day!!
I also take probiotics, magnesium, adek's, garlic and horseradish and NAC and saline nasal rinses every day. I agree that a combination of western meds and herbal supplements may just be the answer.

I also do a gastly 'shot' every night before i go to bed that contains one crushed garlic clove, 1 tbsp of manuka honey, lemon juice, 6 drops of water soluble oregano oil and boiled water - i just pretend it's tequila and knock it back!!! I've not had a cold or any sort of bug all winter and i think it is this shot that has done wonders for my immune system.

To the poster - do you take any supplements at all?? I know magnesium helps with anxiety and depression and is severly depleted in our bodies after most of our antibiotic rounds (especially cipro and tobra - they leech magnesium from our bodies in a big way). I would strongly suggest if you dont currently take a magnesium supplement, that you start doing so, twice a day. My anxiety completely disappeared when i started taking it.

I also wonder how much 'attitude' plays in all this - i NEVER think about death and refuse to live my life according to the 'cf' rules, i do whatever the hell i please, but just be sensible about sleep and nutrition. I also never miss my supplements and vitamins. I also exercise and do phsyio now (just PEP once a day). And i laugh, all day every day, i see something funny in just about every situation and am renowned for having a totally off the wall and sick sense of humour. Laughter is the best medicine they say, i wonder how much truth there is to this? Our whole family is mad, it's genetic <img src="i/expressions/face-icon-small-happy.gif" border="0">

Thanks everyone, as usual you are all a great source of info and have given me things to think about. Namely, how i can set about ensuring my lungs are not damaged anymore, but without 'nuking' them anymore often than i currently do.

 

[KrazyKat]

Thanks everybody, it's good to hear differing opinions and methods of 'coping' with our illness. Our docs are fairly backwards over here as far as all the new treatments are concerned - we are never involved in testing over here and like Ender, i rely on my own knowledge more than the docs. My doctor actually said to me at my last visit (as i explained to her why i wanted Azithromycin and what doseage she needed to prescribe me) 'kat does it bother you that you know more about your illness than i do?" lol
I replied 'no it doesnt, i am my only patient, whereas you have hundreds and you listen to me with an open mind and are responsive, that's all i can ever ask of you and is more than any other doctor has ever done for me'. I felt sorry for her,she is lovely and not a CF specialist, just a respiratory doc!! Now, as i find out stuff through this forum, i tell her and send her research results etc. She laughs about it, but appreciates that i have more time to focus on this than she does.

Sean and Ender, you two were probably the catalyst for me as far as supplements and natural remedies are concerned - i was already inhaling various herbs through a facial sauna when you guys put me on to Oregano Oil, which i still take to this day!!
I also take probiotics, magnesium, adek's, garlic and horseradish and NAC and saline nasal rinses every day. I agree that a combination of western meds and herbal supplements may just be the answer.

I also do a gastly 'shot' every night before i go to bed that contains one crushed garlic clove, 1 tbsp of manuka honey, lemon juice, 6 drops of water soluble oregano oil and boiled water - i just pretend it's tequila and knock it back!!! I've not had a cold or any sort of bug all winter and i think it is this shot that has done wonders for my immune system.

To the poster - do you take any supplements at all?? I know magnesium helps with anxiety and depression and is severly depleted in our bodies after most of our antibiotic rounds (especially cipro and tobra - they leech magnesium from our bodies in a big way). I would strongly suggest if you dont currently take a magnesium supplement, that you start doing so, twice a day. My anxiety completely disappeared when i started taking it.

I also wonder how much 'attitude' plays in all this - i NEVER think about death and refuse to live my life according to the 'cf' rules, i do whatever the hell i please, but just be sensible about sleep and nutrition. I also never miss my supplements and vitamins. I also exercise and do phsyio now (just PEP once a day). And i laugh, all day every day, i see something funny in just about every situation and am renowned for having a totally off the wall and sick sense of humour. Laughter is the best medicine they say, i wonder how much truth there is to this? Our whole family is mad, it's genetic <img src="i/expressions/face-icon-small-happy.gif" border="0">

Thanks everyone, as usual you are all a great source of info and have given me things to think about. Namely, how i can set about ensuring my lungs are not damaged anymore, but without 'nuking' them anymore often than i currently do.

 

[KrazyKat]

Thanks everybody, it's good to hear differing opinions and methods of 'coping' with our illness. Our docs are fairly backwards over here as far as all the new treatments are concerned - we are never involved in testing over here and like Ender, i rely on my own knowledge more than the docs. My doctor actually said to me at my last visit (as i explained to her why i wanted Azithromycin and what doseage she needed to prescribe me) 'kat does it bother you that you know more about your illness than i do?" lol
I replied 'no it doesnt, i am my only patient, whereas you have hundreds and you listen to me with an open mind and are responsive, that's all i can ever ask of you and is more than any other doctor has ever done for me'. I felt sorry for her,she is lovely and not a CF specialist, just a respiratory doc!! Now, as i find out stuff through this forum, i tell her and send her research results etc. She laughs about it, but appreciates that i have more time to focus on this than she does.

Sean and Ender, you two were probably the catalyst for me as far as supplements and natural remedies are concerned - i was already inhaling various herbs through a facial sauna when you guys put me on to Oregano Oil, which i still take to this day!!
I also take probiotics, magnesium, adek's, garlic and horseradish and NAC and saline nasal rinses every day. I agree that a combination of western meds and herbal supplements may just be the answer.

I also do a gastly 'shot' every night before i go to bed that contains one crushed garlic clove, 1 tbsp of manuka honey, lemon juice, 6 drops of water soluble oregano oil and boiled water - i just pretend it's tequila and knock it back!!! I've not had a cold or any sort of bug all winter and i think it is this shot that has done wonders for my immune system.

To the poster - do you take any supplements at all?? I know magnesium helps with anxiety and depression and is severly depleted in our bodies after most of our antibiotic rounds (especially cipro and tobra - they leech magnesium from our bodies in a big way). I would strongly suggest if you dont currently take a magnesium supplement, that you start doing so, twice a day. My anxiety completely disappeared when i started taking it.

I also wonder how much 'attitude' plays in all this - i NEVER think about death and refuse to live my life according to the 'cf' rules, i do whatever the hell i please, but just be sensible about sleep and nutrition. I also never miss my supplements and vitamins. I also exercise and do phsyio now (just PEP once a day). And i laugh, all day every day, i see something funny in just about every situation and am renowned for having a totally off the wall and sick sense of humour. Laughter is the best medicine they say, i wonder how much truth there is to this? Our whole family is mad, it's genetic <img src="i/expressions/face-icon-small-happy.gif" border="0">

Thanks everyone, as usual you are all a great source of info and have given me things to think about. Namely, how i can set about ensuring my lungs are not damaged anymore, but without 'nuking' them anymore often than i currently do.

 

[KrazyKat]

Thanks everybody, it's good to hear differing opinions and methods of 'coping' with our illness. Our docs are fairly backwards over here as far as all the new treatments are concerned - we are never involved in testing over here and like Ender, i rely on my own knowledge more than the docs. My doctor actually said to me at my last visit (as i explained to her why i wanted Azithromycin and what doseage she needed to prescribe me) 'kat does it bother you that you know more about your illness than i do?" lol
I replied 'no it doesnt, i am my only patient, whereas you have hundreds and you listen to me with an open mind and are responsive, that's all i can ever ask of you and is more than any other doctor has ever done for me'. I felt sorry for her,she is lovely and not a CF specialist, just a respiratory doc!! Now, as i find out stuff through this forum, i tell her and send her research results etc. She laughs about it, but appreciates that i have more time to focus on this than she does.

Sean and Ender, you two were probably the catalyst for me as far as supplements and natural remedies are concerned - i was already inhaling various herbs through a facial sauna when you guys put me on to Oregano Oil, which i still take to this day!!
I also take probiotics, magnesium, adek's, garlic and horseradish and NAC and saline nasal rinses every day. I agree that a combination of western meds and herbal supplements may just be the answer.

I also do a gastly 'shot' every night before i go to bed that contains one crushed garlic clove, 1 tbsp of manuka honey, lemon juice, 6 drops of water soluble oregano oil and boiled water - i just pretend it's tequila and knock it back!!! I've not had a cold or any sort of bug all winter and i think it is this shot that has done wonders for my immune system.

To the poster - do you take any supplements at all?? I know magnesium helps with anxiety and depression and is severly depleted in our bodies after most of our antibiotic rounds (especially cipro and tobra - they leech magnesium from our bodies in a big way). I would strongly suggest if you dont currently take a magnesium supplement, that you start doing so, twice a day. My anxiety completely disappeared when i started taking it.

I also wonder how much 'attitude' plays in all this - i NEVER think about death and refuse to live my life according to the 'cf' rules, i do whatever the hell i please, but just be sensible about sleep and nutrition. I also never miss my supplements and vitamins. I also exercise and do phsyio now (just PEP once a day). And i laugh, all day every day, i see something funny in just about every situation and am renowned for having a totally off the wall and sick sense of humour. Laughter is the best medicine they say, i wonder how much truth there is to this? Our whole family is mad, it's genetic <img src="i/expressions/face-icon-small-happy.gif" border="0">

Thanks everyone, as usual you are all a great source of info and have given me things to think about. Namely, how i can set about ensuring my lungs are not damaged anymore, but without 'nuking' them anymore often than i currently do.

 

[KrazyKat]

Thanks everybody, it's good to hear differing opinions and methods of 'coping' with our illness. Our docs are fairly backwards over here as far as all the new treatments are concerned - we are never involved in testing over here and like Ender, i rely on my own knowledge more than the docs. My doctor actually said to me at my last visit (as i explained to her why i wanted Azithromycin and what doseage she needed to prescribe me) 'kat does it bother you that you know more about your illness than i do?" lol
I replied 'no it doesnt, i am my only patient, whereas you have hundreds and you listen to me with an open mind and are responsive, that's all i can ever ask of you and is more than any other doctor has ever done for me'. I felt sorry for her,she is lovely and not a CF specialist, just a respiratory doc!! Now, as i find out stuff through this forum, i tell her and send her research results etc. She laughs about it, but appreciates that i have more time to focus on this than she does.

Sean and Ender, you two were probably the catalyst for me as far as supplements and natural remedies are concerned - i was already inhaling various herbs through a facial sauna when you guys put me on to Oregano Oil, which i still take to this day!!
I also take probiotics, magnesium, adek's, garlic and horseradish and NAC and saline nasal rinses every day. I agree that a combination of western meds and herbal supplements may just be the answer.

I also do a gastly 'shot' every night before i go to bed that contains one crushed garlic clove, 1 tbsp of manuka honey, lemon juice, 6 drops of water soluble oregano oil and boiled water - i just pretend it's tequila and knock it back!!! I've not had a cold or any sort of bug all winter and i think it is this shot that has done wonders for my immune system.

To the poster - do you take any supplements at all?? I know magnesium helps with anxiety and depression and is severly depleted in our bodies after most of our antibiotic rounds (especially cipro and tobra - they leech magnesium from our bodies in a big way). I would strongly suggest if you dont currently take a magnesium supplement, that you start doing so, twice a day. My anxiety completely disappeared when i started taking it.

I also wonder how much 'attitude' plays in all this - i NEVER think about death and refuse to live my life according to the 'cf' rules, i do whatever the hell i please, but just be sensible about sleep and nutrition. I also never miss my supplements and vitamins. I also exercise and do phsyio now (just PEP once a day). And i laugh, all day every day, i see something funny in just about every situation and am renowned for having a totally off the wall and sick sense of humour. Laughter is the best medicine they say, i wonder how much truth there is to this? Our whole family is mad, it's genetic <img src="i/expressions/face-icon-small-happy.gif" border="0">

Thanks everyone, as usual you are all a great source of info and have given me things to think about. Namely, how i can set about ensuring my lungs are not damaged anymore, but without 'nuking' them anymore often than i currently do.