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Sweat Tests Mishaps and my Insanity

J

JennifersHope

New member
Okay, So where to begin.. I am not to sure... I recently switched CF centers, probably about six months ago. I love my new CF team they are so great. I could never say enough good things about them.

Since moving to SC, I have had a dramatic increase in my 'exacerbations' but like always I get almost completly better once I am pulled out of work and put on high doses of steroids.

A few months ago my team suggested since I have such a severe broncho-spastic cough that a lot of my troubles are asthma/allergic reaction. Seems like the hospital setting itself is what trigers me off. Of course my CF has gotten so much worse since I switched from early childhood education to nursing 8 years ago and my nursing has all been done in a hospital.

Anyway fast forward, two months ago, my team decided that I need to stop working all together for now since I was getting so stinking sick every time I worked, I stopped working and I am breathing amazing, not coughing anything up, don't need my oxygen, bipap and barely felt like I needed any of my breathing treatments.....

So I asked the team if they thought it was possible if all this time in NJ that I worked in the hospital and here as well if most of my problems could be coming from this allergic reaction from whatever makes me sick in the hospital.. and they think for pretty certain that it at least plays a roll

Now fast forward even more.. My new team does some investagation because somethings are not totally adding up such as my last culture came back negative, and also my lungs for my age as a CFer look pretty dang good.

One other thing is, I have had three positive sweat tests.. and genetic testing.... Now here is the kicker, though my doctor says you can't throw the baby out with the bath water, in my case, because of Addison's disease which is known to cause false positives on sweat tests.. I no longer am going to accept those as a reason for dx.. we go further into my genetic screening.. I was always told I had the R117H gene and something with a 5T/11TG , and for sure did not have the DF508 gene at all

Well my nurse got my actual report it was from Genzyme, so it wasn't the full panel but the only gene that it said I had for sure was the DF508... which like I said I was always told I didn't have.. SO excuse me but WTH?

So what does that leave me with??? Three positive sweat tests that may of may not be accurate and ONE positive CF gene from a limited panel.. but that panel did check for the R117h gene and I clearly don't have that one...

So... you can imagine where I am going with this right?? My head is all over the place..since I spent the first five years of being dx in total denial, mostly telling ppl I just had a cold....this is making my brain go insane.. I have been followed for 8 years in a CF center and I am totally freaked out. Though I know there are thousands of mutations etc...

I asked for the ambry genetics testing for now they are just doing a fecal elastase test.. but when I go back in Oct, I am going to really ask for the full ambry genetics.

SO for now I live in the twilight zone.. and I sit here and I wonder, my family wonders and hopes.. and yet everything is just up in the air and I can't do anything about it..

Just wanted to throw that out there for you guys... I will never for as long as I live trust any test unless I personally see the results myself and it is genetic testing. I am not saying I don't have CF and right now either is my team but to me, I want 100 percent proof.. Of course things like me needing enzymes and all the other stuff don't really fit into the non CF picture but still
 
J

JennifersHope

New member
Okay, So where to begin.. I am not to sure... I recently switched CF centers, probably about six months ago. I love my new CF team they are so great. I could never say enough good things about them.

Since moving to SC, I have had a dramatic increase in my 'exacerbations' but like always I get almost completly better once I am pulled out of work and put on high doses of steroids.

A few months ago my team suggested since I have such a severe broncho-spastic cough that a lot of my troubles are asthma/allergic reaction. Seems like the hospital setting itself is what trigers me off. Of course my CF has gotten so much worse since I switched from early childhood education to nursing 8 years ago and my nursing has all been done in a hospital.

Anyway fast forward, two months ago, my team decided that I need to stop working all together for now since I was getting so stinking sick every time I worked, I stopped working and I am breathing amazing, not coughing anything up, don't need my oxygen, bipap and barely felt like I needed any of my breathing treatments.....

So I asked the team if they thought it was possible if all this time in NJ that I worked in the hospital and here as well if most of my problems could be coming from this allergic reaction from whatever makes me sick in the hospital.. and they think for pretty certain that it at least plays a roll

Now fast forward even more.. My new team does some investagation because somethings are not totally adding up such as my last culture came back negative, and also my lungs for my age as a CFer look pretty dang good.

One other thing is, I have had three positive sweat tests.. and genetic testing.... Now here is the kicker, though my doctor says you can't throw the baby out with the bath water, in my case, because of Addison's disease which is known to cause false positives on sweat tests.. I no longer am going to accept those as a reason for dx.. we go further into my genetic screening.. I was always told I had the R117H gene and something with a 5T/11TG , and for sure did not have the DF508 gene at all

Well my nurse got my actual report it was from Genzyme, so it wasn't the full panel but the only gene that it said I had for sure was the DF508... which like I said I was always told I didn't have.. SO excuse me but WTH?

So what does that leave me with??? Three positive sweat tests that may of may not be accurate and ONE positive CF gene from a limited panel.. but that panel did check for the R117h gene and I clearly don't have that one...

So... you can imagine where I am going with this right?? My head is all over the place..since I spent the first five years of being dx in total denial, mostly telling ppl I just had a cold....this is making my brain go insane.. I have been followed for 8 years in a CF center and I am totally freaked out. Though I know there are thousands of mutations etc...

I asked for the ambry genetics testing for now they are just doing a fecal elastase test.. but when I go back in Oct, I am going to really ask for the full ambry genetics.

SO for now I live in the twilight zone.. and I sit here and I wonder, my family wonders and hopes.. and yet everything is just up in the air and I can't do anything about it..

Just wanted to throw that out there for you guys... I will never for as long as I live trust any test unless I personally see the results myself and it is genetic testing. I am not saying I don't have CF and right now either is my team but to me, I want 100 percent proof.. Of course things like me needing enzymes and all the other stuff don't really fit into the non CF picture but still
 
J

JennifersHope

New member
Okay, So where to begin.. I am not to sure... I recently switched CF centers, probably about six months ago. I love my new CF team they are so great. I could never say enough good things about them.

Since moving to SC, I have had a dramatic increase in my 'exacerbations' but like always I get almost completly better once I am pulled out of work and put on high doses of steroids.

A few months ago my team suggested since I have such a severe broncho-spastic cough that a lot of my troubles are asthma/allergic reaction. Seems like the hospital setting itself is what trigers me off. Of course my CF has gotten so much worse since I switched from early childhood education to nursing 8 years ago and my nursing has all been done in a hospital.

Anyway fast forward, two months ago, my team decided that I need to stop working all together for now since I was getting so stinking sick every time I worked, I stopped working and I am breathing amazing, not coughing anything up, don't need my oxygen, bipap and barely felt like I needed any of my breathing treatments.....

So I asked the team if they thought it was possible if all this time in NJ that I worked in the hospital and here as well if most of my problems could be coming from this allergic reaction from whatever makes me sick in the hospital.. and they think for pretty certain that it at least plays a roll

Now fast forward even more.. My new team does some investagation because somethings are not totally adding up such as my last culture came back negative, and also my lungs for my age as a CFer look pretty dang good.

One other thing is, I have had three positive sweat tests.. and genetic testing.... Now here is the kicker, though my doctor says you can't throw the baby out with the bath water, in my case, because of Addison's disease which is known to cause false positives on sweat tests.. I no longer am going to accept those as a reason for dx.. we go further into my genetic screening.. I was always told I had the R117H gene and something with a 5T/11TG , and for sure did not have the DF508 gene at all

Well my nurse got my actual report it was from Genzyme, so it wasn't the full panel but the only gene that it said I had for sure was the DF508... which like I said I was always told I didn't have.. SO excuse me but WTH?

So what does that leave me with??? Three positive sweat tests that may of may not be accurate and ONE positive CF gene from a limited panel.. but that panel did check for the R117h gene and I clearly don't have that one...

So... you can imagine where I am going with this right?? My head is all over the place..since I spent the first five years of being dx in total denial, mostly telling ppl I just had a cold....this is making my brain go insane.. I have been followed for 8 years in a CF center and I am totally freaked out. Though I know there are thousands of mutations etc...

I asked for the ambry genetics testing for now they are just doing a fecal elastase test.. but when I go back in Oct, I am going to really ask for the full ambry genetics.

SO for now I live in the twilight zone.. and I sit here and I wonder, my family wonders and hopes.. and yet everything is just up in the air and I can't do anything about it..

Just wanted to throw that out there for you guys... I will never for as long as I live trust any test unless I personally see the results myself and it is genetic testing. I am not saying I don't have CF and right now either is my team but to me, I want 100 percent proof.. Of course things like me needing enzymes and all the other stuff don't really fit into the non CF picture but still
 
J

JennifersHope

New member
Okay, So where to begin.. I am not to sure... I recently switched CF centers, probably about six months ago. I love my new CF team they are so great. I could never say enough good things about them.

Since moving to SC, I have had a dramatic increase in my 'exacerbations' but like always I get almost completly better once I am pulled out of work and put on high doses of steroids.

A few months ago my team suggested since I have such a severe broncho-spastic cough that a lot of my troubles are asthma/allergic reaction. Seems like the hospital setting itself is what trigers me off. Of course my CF has gotten so much worse since I switched from early childhood education to nursing 8 years ago and my nursing has all been done in a hospital.

Anyway fast forward, two months ago, my team decided that I need to stop working all together for now since I was getting so stinking sick every time I worked, I stopped working and I am breathing amazing, not coughing anything up, don't need my oxygen, bipap and barely felt like I needed any of my breathing treatments.....

So I asked the team if they thought it was possible if all this time in NJ that I worked in the hospital and here as well if most of my problems could be coming from this allergic reaction from whatever makes me sick in the hospital.. and they think for pretty certain that it at least plays a roll

Now fast forward even more.. My new team does some investagation because somethings are not totally adding up such as my last culture came back negative, and also my lungs for my age as a CFer look pretty dang good.

One other thing is, I have had three positive sweat tests.. and genetic testing.... Now here is the kicker, though my doctor says you can't throw the baby out with the bath water, in my case, because of Addison's disease which is known to cause false positives on sweat tests.. I no longer am going to accept those as a reason for dx.. we go further into my genetic screening.. I was always told I had the R117H gene and something with a 5T/11TG , and for sure did not have the DF508 gene at all

Well my nurse got my actual report it was from Genzyme, so it wasn't the full panel but the only gene that it said I had for sure was the DF508... which like I said I was always told I didn't have.. SO excuse me but WTH?

So what does that leave me with??? Three positive sweat tests that may of may not be accurate and ONE positive CF gene from a limited panel.. but that panel did check for the R117h gene and I clearly don't have that one...

So... you can imagine where I am going with this right?? My head is all over the place..since I spent the first five years of being dx in total denial, mostly telling ppl I just had a cold....this is making my brain go insane.. I have been followed for 8 years in a CF center and I am totally freaked out. Though I know there are thousands of mutations etc...

I asked for the ambry genetics testing for now they are just doing a fecal elastase test.. but when I go back in Oct, I am going to really ask for the full ambry genetics.

SO for now I live in the twilight zone.. and I sit here and I wonder, my family wonders and hopes.. and yet everything is just up in the air and I can't do anything about it..

Just wanted to throw that out there for you guys... I will never for as long as I live trust any test unless I personally see the results myself and it is genetic testing. I am not saying I don't have CF and right now either is my team but to me, I want 100 percent proof.. Of course things like me needing enzymes and all the other stuff don't really fit into the non CF picture but still
 
J

JennifersHope

New member
Okay, So where to begin.. I am not to sure... I recently switched CF centers, probably about six months ago. I love my new CF team they are so great. I could never say enough good things about them.
<br />
<br />Since moving to SC, I have had a dramatic increase in my 'exacerbations' but like always I get almost completly better once I am pulled out of work and put on high doses of steroids.
<br />
<br />A few months ago my team suggested since I have such a severe broncho-spastic cough that a lot of my troubles are asthma/allergic reaction. Seems like the hospital setting itself is what trigers me off. Of course my CF has gotten so much worse since I switched from early childhood education to nursing 8 years ago and my nursing has all been done in a hospital.
<br />
<br />Anyway fast forward, two months ago, my team decided that I need to stop working all together for now since I was getting so stinking sick every time I worked, I stopped working and I am breathing amazing, not coughing anything up, don't need my oxygen, bipap and barely felt like I needed any of my breathing treatments.....
<br />
<br />So I asked the team if they thought it was possible if all this time in NJ that I worked in the hospital and here as well if most of my problems could be coming from this allergic reaction from whatever makes me sick in the hospital.. and they think for pretty certain that it at least plays a roll
<br />
<br />Now fast forward even more.. My new team does some investagation because somethings are not totally adding up such as my last culture came back negative, and also my lungs for my age as a CFer look pretty dang good.
<br />
<br />One other thing is, I have had three positive sweat tests.. and genetic testing.... Now here is the kicker, though my doctor says you can't throw the baby out with the bath water, in my case, because of Addison's disease which is known to cause false positives on sweat tests.. I no longer am going to accept those as a reason for dx.. we go further into my genetic screening.. I was always told I had the R117H gene and something with a 5T/11TG , and for sure did not have the DF508 gene at all
<br />
<br />Well my nurse got my actual report it was from Genzyme, so it wasn't the full panel but the only gene that it said I had for sure was the DF508... which like I said I was always told I didn't have.. SO excuse me but WTH?
<br />
<br />So what does that leave me with??? Three positive sweat tests that may of may not be accurate and ONE positive CF gene from a limited panel.. but that panel did check for the R117h gene and I clearly don't have that one...
<br />
<br />So... you can imagine where I am going with this right?? My head is all over the place..since I spent the first five years of being dx in total denial, mostly telling ppl I just had a cold....this is making my brain go insane.. I have been followed for 8 years in a CF center and I am totally freaked out. Though I know there are thousands of mutations etc...
<br />
<br />I asked for the ambry genetics testing for now they are just doing a fecal elastase test.. but when I go back in Oct, I am going to really ask for the full ambry genetics.
<br />
<br />SO for now I live in the twilight zone.. and I sit here and I wonder, my family wonders and hopes.. and yet everything is just up in the air and I can't do anything about it..
<br />
<br />Just wanted to throw that out there for you guys... I will never for as long as I live trust any test unless I personally see the results myself and it is genetic testing. I am not saying I don't have CF and right now either is my team but to me, I want 100 percent proof.. Of course things like me needing enzymes and all the other stuff don't really fit into the non CF picture but still
<br />
<br />
 
R

Ratatosk

Administrator
Staff member
Ugh! How confusing. When DS was diagnosed, he had a normal sweat test and a couple confusing blood tests that were inconclusive due to there being not enough of a sample; however, he had one that the doctor on call at the NICU had sent to Mayo prior to his being lifeflighted to the City. So there was always, always an inkling of doubt that maybe, just maybe he didn't have cf. We figured we'd just continue to treat him as if he did have cf and if at somepoint test results showed the contrary, he'd have very healthy lungs. Unfortunately a month later he cultured pseudomonas and that pretty much brought it home to us that he DID have cf -- except, we had/have doubts about the local clinic lab. So 6 years later, despite his digestive issues and various culture results -- pseudo, H-flu, pseudo floresens (sp) steno malt we still have that teeny tiny inkling of doubt.
 
R

Ratatosk

Administrator
Staff member
Ugh! How confusing. When DS was diagnosed, he had a normal sweat test and a couple confusing blood tests that were inconclusive due to there being not enough of a sample; however, he had one that the doctor on call at the NICU had sent to Mayo prior to his being lifeflighted to the City. So there was always, always an inkling of doubt that maybe, just maybe he didn't have cf. We figured we'd just continue to treat him as if he did have cf and if at somepoint test results showed the contrary, he'd have very healthy lungs. Unfortunately a month later he cultured pseudomonas and that pretty much brought it home to us that he DID have cf -- except, we had/have doubts about the local clinic lab. So 6 years later, despite his digestive issues and various culture results -- pseudo, H-flu, pseudo floresens (sp) steno malt we still have that teeny tiny inkling of doubt.
 
R

Ratatosk

Administrator
Staff member
Ugh! How confusing. When DS was diagnosed, he had a normal sweat test and a couple confusing blood tests that were inconclusive due to there being not enough of a sample; however, he had one that the doctor on call at the NICU had sent to Mayo prior to his being lifeflighted to the City. So there was always, always an inkling of doubt that maybe, just maybe he didn't have cf. We figured we'd just continue to treat him as if he did have cf and if at somepoint test results showed the contrary, he'd have very healthy lungs. Unfortunately a month later he cultured pseudomonas and that pretty much brought it home to us that he DID have cf -- except, we had/have doubts about the local clinic lab. So 6 years later, despite his digestive issues and various culture results -- pseudo, H-flu, pseudo floresens (sp) steno malt we still have that teeny tiny inkling of doubt.
 
R

Ratatosk

Administrator
Staff member
Ugh! How confusing. When DS was diagnosed, he had a normal sweat test and a couple confusing blood tests that were inconclusive due to there being not enough of a sample; however, he had one that the doctor on call at the NICU had sent to Mayo prior to his being lifeflighted to the City. So there was always, always an inkling of doubt that maybe, just maybe he didn't have cf. We figured we'd just continue to treat him as if he did have cf and if at somepoint test results showed the contrary, he'd have very healthy lungs. Unfortunately a month later he cultured pseudomonas and that pretty much brought it home to us that he DID have cf -- except, we had/have doubts about the local clinic lab. So 6 years later, despite his digestive issues and various culture results -- pseudo, H-flu, pseudo floresens (sp) steno malt we still have that teeny tiny inkling of doubt.
 
R

Ratatosk

Administrator
Staff member
Ugh! How confusing. When DS was diagnosed, he had a normal sweat test and a couple confusing blood tests that were inconclusive due to there being not enough of a sample; however, he had one that the doctor on call at the NICU had sent to Mayo prior to his being lifeflighted to the City. So there was always, always an inkling of doubt that maybe, just maybe he didn't have cf. We figured we'd just continue to treat him as if he did have cf and if at somepoint test results showed the contrary, he'd have very healthy lungs. Unfortunately a month later he cultured pseudomonas and that pretty much brought it home to us that he DID have cf -- except, we had/have doubts about the local clinic lab. So 6 years later, despite his digestive issues and various culture results -- pseudo, H-flu, pseudo floresens (sp) steno malt we still have that teeny tiny inkling of doubt.
 
N

Nightwriter

New member
Jennifer,

I love this post. And I hope that people can learn something from your experience. This is exactly the kind of the thing that I always talk about -- inflammation plays a HUGE part in managing this disease. Identify, and remove sources of this disease like you did -- and the symptoms reduce DRASTICALLY. There have been recent studies showing the environmental effects on CF. You will see this area being addressed more in the future. You are VERY lucky you have such a forward thinking CF team.

Although my story is actually the reverse of yours concerning diagnosis, my results are the same as yours. I went from continual IV and oral meds, including 4 heavy growth strains of P.A., MRSA, MAC, etc., steadily dropping FEV1 (as low as 32%), near total drug resistance, bad hemoptysis, etc -- to the complete opposite. In other words not only stopping the progression (12 years ago) to reversing the progression in many ways.

My diagnosis was bronchiectasis, high normal sweat test, and one CF gene. A year and a half ago, they found my second CF gene. The diagnosis made absolutely no difference in my treatment. My doctor treats every patient the same, regardless of diagnosis -- everyone must control their inflammation. It doesn't even matter what is wrong with someone, if they do this --they see dramatic improvement.

I remember reading your story and even talking with you in chat and I thought ohmigod, you work in a hospital! I remember you moving and your condition getting worse. But it was not my place to say anything. You wouldn't have believed me anyway.

I know from my doctor that hospitals are the absolute worst place. The strong disinfectants that they use are incredibly irritating for lungs and particularly horrible for allergy and chemically sensitive people. Your airways react by swelling in the airways or constricting (the asthma component of CF), trapping bacteria, leading to infection.

Most of the time when I have an exacerbation, we stop it while it is just inflammation. I have written extensively how I do this (sometimes I get a cortisone shot as part of the treatment) before it turns into a bacterial infection.

There are no tests to see if you are allergic to the disinfectants -- but these chemicals are irritating not only to your lungs but also your entire body. So people start getting a lot of other illnesses too -- but they are really being triggered by what is called Multiple Chemical Sensitivities. I've written a lot about it here in other threads.

One of the problems with CF, is with that diagnosis, they throw every CF med at people WITHOUT looking at symptoms. My doctor has a holistic approach. You are more than a diagnosis or a pair of lungs. The cookie cutter approach DOES NOT work. My doctor changes my meds, supplements, mucus clearance routine, depending upon how well my asthma is controlled, frequency and severity of exacerbations, and yearly PFT's. My lung function is HIGHER today than it was 12 years ago, when I was on antibiotics all the time. I have also not been on any IV in twelve years.

Again, lucky your team understands this -- because even though it is essential to address allergies, chemical sensivities, and asthma in your home and work environment--you must have a doctor that understands the contribution these have on how CF manifests itself.

I am very happy for you.
 
N

Nightwriter

New member
Jennifer,

I love this post. And I hope that people can learn something from your experience. This is exactly the kind of the thing that I always talk about -- inflammation plays a HUGE part in managing this disease. Identify, and remove sources of this disease like you did -- and the symptoms reduce DRASTICALLY. There have been recent studies showing the environmental effects on CF. You will see this area being addressed more in the future. You are VERY lucky you have such a forward thinking CF team.

Although my story is actually the reverse of yours concerning diagnosis, my results are the same as yours. I went from continual IV and oral meds, including 4 heavy growth strains of P.A., MRSA, MAC, etc., steadily dropping FEV1 (as low as 32%), near total drug resistance, bad hemoptysis, etc -- to the complete opposite. In other words not only stopping the progression (12 years ago) to reversing the progression in many ways.

My diagnosis was bronchiectasis, high normal sweat test, and one CF gene. A year and a half ago, they found my second CF gene. The diagnosis made absolutely no difference in my treatment. My doctor treats every patient the same, regardless of diagnosis -- everyone must control their inflammation. It doesn't even matter what is wrong with someone, if they do this --they see dramatic improvement.

I remember reading your story and even talking with you in chat and I thought ohmigod, you work in a hospital! I remember you moving and your condition getting worse. But it was not my place to say anything. You wouldn't have believed me anyway.

I know from my doctor that hospitals are the absolute worst place. The strong disinfectants that they use are incredibly irritating for lungs and particularly horrible for allergy and chemically sensitive people. Your airways react by swelling in the airways or constricting (the asthma component of CF), trapping bacteria, leading to infection.

Most of the time when I have an exacerbation, we stop it while it is just inflammation. I have written extensively how I do this (sometimes I get a cortisone shot as part of the treatment) before it turns into a bacterial infection.

There are no tests to see if you are allergic to the disinfectants -- but these chemicals are irritating not only to your lungs but also your entire body. So people start getting a lot of other illnesses too -- but they are really being triggered by what is called Multiple Chemical Sensitivities. I've written a lot about it here in other threads.

One of the problems with CF, is with that diagnosis, they throw every CF med at people WITHOUT looking at symptoms. My doctor has a holistic approach. You are more than a diagnosis or a pair of lungs. The cookie cutter approach DOES NOT work. My doctor changes my meds, supplements, mucus clearance routine, depending upon how well my asthma is controlled, frequency and severity of exacerbations, and yearly PFT's. My lung function is HIGHER today than it was 12 years ago, when I was on antibiotics all the time. I have also not been on any IV in twelve years.

Again, lucky your team understands this -- because even though it is essential to address allergies, chemical sensivities, and asthma in your home and work environment--you must have a doctor that understands the contribution these have on how CF manifests itself.

I am very happy for you.
 
N

Nightwriter

New member
Jennifer,

I love this post. And I hope that people can learn something from your experience. This is exactly the kind of the thing that I always talk about -- inflammation plays a HUGE part in managing this disease. Identify, and remove sources of this disease like you did -- and the symptoms reduce DRASTICALLY. There have been recent studies showing the environmental effects on CF. You will see this area being addressed more in the future. You are VERY lucky you have such a forward thinking CF team.

Although my story is actually the reverse of yours concerning diagnosis, my results are the same as yours. I went from continual IV and oral meds, including 4 heavy growth strains of P.A., MRSA, MAC, etc., steadily dropping FEV1 (as low as 32%), near total drug resistance, bad hemoptysis, etc -- to the complete opposite. In other words not only stopping the progression (12 years ago) to reversing the progression in many ways.

My diagnosis was bronchiectasis, high normal sweat test, and one CF gene. A year and a half ago, they found my second CF gene. The diagnosis made absolutely no difference in my treatment. My doctor treats every patient the same, regardless of diagnosis -- everyone must control their inflammation. It doesn't even matter what is wrong with someone, if they do this --they see dramatic improvement.

I remember reading your story and even talking with you in chat and I thought ohmigod, you work in a hospital! I remember you moving and your condition getting worse. But it was not my place to say anything. You wouldn't have believed me anyway.

I know from my doctor that hospitals are the absolute worst place. The strong disinfectants that they use are incredibly irritating for lungs and particularly horrible for allergy and chemically sensitive people. Your airways react by swelling in the airways or constricting (the asthma component of CF), trapping bacteria, leading to infection.

Most of the time when I have an exacerbation, we stop it while it is just inflammation. I have written extensively how I do this (sometimes I get a cortisone shot as part of the treatment) before it turns into a bacterial infection.

There are no tests to see if you are allergic to the disinfectants -- but these chemicals are irritating not only to your lungs but also your entire body. So people start getting a lot of other illnesses too -- but they are really being triggered by what is called Multiple Chemical Sensitivities. I've written a lot about it here in other threads.

One of the problems with CF, is with that diagnosis, they throw every CF med at people WITHOUT looking at symptoms. My doctor has a holistic approach. You are more than a diagnosis or a pair of lungs. The cookie cutter approach DOES NOT work. My doctor changes my meds, supplements, mucus clearance routine, depending upon how well my asthma is controlled, frequency and severity of exacerbations, and yearly PFT's. My lung function is HIGHER today than it was 12 years ago, when I was on antibiotics all the time. I have also not been on any IV in twelve years.

Again, lucky your team understands this -- because even though it is essential to address allergies, chemical sensivities, and asthma in your home and work environment--you must have a doctor that understands the contribution these have on how CF manifests itself.

I am very happy for you.
 
N

Nightwriter

New member
Jennifer,

I love this post. And I hope that people can learn something from your experience. This is exactly the kind of the thing that I always talk about -- inflammation plays a HUGE part in managing this disease. Identify, and remove sources of this disease like you did -- and the symptoms reduce DRASTICALLY. There have been recent studies showing the environmental effects on CF. You will see this area being addressed more in the future. You are VERY lucky you have such a forward thinking CF team.

Although my story is actually the reverse of yours concerning diagnosis, my results are the same as yours. I went from continual IV and oral meds, including 4 heavy growth strains of P.A., MRSA, MAC, etc., steadily dropping FEV1 (as low as 32%), near total drug resistance, bad hemoptysis, etc -- to the complete opposite. In other words not only stopping the progression (12 years ago) to reversing the progression in many ways.

My diagnosis was bronchiectasis, high normal sweat test, and one CF gene. A year and a half ago, they found my second CF gene. The diagnosis made absolutely no difference in my treatment. My doctor treats every patient the same, regardless of diagnosis -- everyone must control their inflammation. It doesn't even matter what is wrong with someone, if they do this --they see dramatic improvement.

I remember reading your story and even talking with you in chat and I thought ohmigod, you work in a hospital! I remember you moving and your condition getting worse. But it was not my place to say anything. You wouldn't have believed me anyway.

I know from my doctor that hospitals are the absolute worst place. The strong disinfectants that they use are incredibly irritating for lungs and particularly horrible for allergy and chemically sensitive people. Your airways react by swelling in the airways or constricting (the asthma component of CF), trapping bacteria, leading to infection.

Most of the time when I have an exacerbation, we stop it while it is just inflammation. I have written extensively how I do this (sometimes I get a cortisone shot as part of the treatment) before it turns into a bacterial infection.

There are no tests to see if you are allergic to the disinfectants -- but these chemicals are irritating not only to your lungs but also your entire body. So people start getting a lot of other illnesses too -- but they are really being triggered by what is called Multiple Chemical Sensitivities. I've written a lot about it here in other threads.

One of the problems with CF, is with that diagnosis, they throw every CF med at people WITHOUT looking at symptoms. My doctor has a holistic approach. You are more than a diagnosis or a pair of lungs. The cookie cutter approach DOES NOT work. My doctor changes my meds, supplements, mucus clearance routine, depending upon how well my asthma is controlled, frequency and severity of exacerbations, and yearly PFT's. My lung function is HIGHER today than it was 12 years ago, when I was on antibiotics all the time. I have also not been on any IV in twelve years.

Again, lucky your team understands this -- because even though it is essential to address allergies, chemical sensivities, and asthma in your home and work environment--you must have a doctor that understands the contribution these have on how CF manifests itself.

I am very happy for you.
 
N

Nightwriter

New member
Jennifer,
<br />
<br />I love this post. And I hope that people can learn something from your experience. This is exactly the kind of the thing that I always talk about -- inflammation plays a HUGE part in managing this disease. Identify, and remove sources of this disease like you did -- and the symptoms reduce DRASTICALLY. There have been recent studies showing the environmental effects on CF. You will see this area being addressed more in the future. You are VERY lucky you have such a forward thinking CF team.
<br />
<br />Although my story is actually the reverse of yours concerning diagnosis, my results are the same as yours. I went from continual IV and oral meds, including 4 heavy growth strains of P.A., MRSA, MAC, etc., steadily dropping FEV1 (as low as 32%), near total drug resistance, bad hemoptysis, etc -- to the complete opposite. In other words not only stopping the progression (12 years ago) to reversing the progression in many ways.
<br />
<br />My diagnosis was bronchiectasis, high normal sweat test, and one CF gene. A year and a half ago, they found my second CF gene. The diagnosis made absolutely no difference in my treatment. My doctor treats every patient the same, regardless of diagnosis -- everyone must control their inflammation. It doesn't even matter what is wrong with someone, if they do this --they see dramatic improvement.
<br />
<br />I remember reading your story and even talking with you in chat and I thought ohmigod, you work in a hospital! I remember you moving and your condition getting worse. But it was not my place to say anything. You wouldn't have believed me anyway.
<br />
<br />I know from my doctor that hospitals are the absolute worst place. The strong disinfectants that they use are incredibly irritating for lungs and particularly horrible for allergy and chemically sensitive people. Your airways react by swelling in the airways or constricting (the asthma component of CF), trapping bacteria, leading to infection.
<br />
<br />Most of the time when I have an exacerbation, we stop it while it is just inflammation. I have written extensively how I do this (sometimes I get a cortisone shot as part of the treatment) before it turns into a bacterial infection.
<br />
<br />There are no tests to see if you are allergic to the disinfectants -- but these chemicals are irritating not only to your lungs but also your entire body. So people start getting a lot of other illnesses too -- but they are really being triggered by what is called Multiple Chemical Sensitivities. I've written a lot about it here in other threads.
<br />
<br />One of the problems with CF, is with that diagnosis, they throw every CF med at people WITHOUT looking at symptoms. My doctor has a holistic approach. You are more than a diagnosis or a pair of lungs. The cookie cutter approach DOES NOT work. My doctor changes my meds, supplements, mucus clearance routine, depending upon how well my asthma is controlled, frequency and severity of exacerbations, and yearly PFT's. My lung function is HIGHER today than it was 12 years ago, when I was on antibiotics all the time. I have also not been on any IV in twelve years.
<br />
<br />Again, lucky your team understands this -- because even though it is essential to address allergies, chemical sensivities, and asthma in your home and work environment--you must have a doctor that understands the contribution these have on how CF manifests itself.
<br />
<br />I am very happy for you.
<br />
<br />
 
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