Lots of Questions...no ANSWERS

phutton · Jul 27, 2008

Happy Sunday!!!

I am so frustrated. I have had the worst year ever. I just want answers. I will give everyone a quick overview of the past year. Everything started getting complicated last summer. My breathing test started to decline with no explanation, base line FEV1 in 80's. After 6 months(October)I was diagnosed with Aspergillus. In hosptial twice from May to October<img src="i/expressions/face-icon-small-sad.gif" border="0"> The steroids for the aspergillus took my borderline CFRD into CFRD. Put me the hospital in December. So 5th time for the year. In my lifetime I have been in 4 times EVER. Ok, so another week in the hospital. The back in the hospital in March. Huge cyst about the size of a tennis ball on my spleen...removed the cysts and most of my spleen. My breathing test continue to be out of check. I was back to "normal" in June with FEV1. Went to clinic last week....numbers horrible again. Went to ER last week with really bad stomach pain...possible pancreas. I just feel like I am on this horrible rollercoaster! My doctor keeps saying he has never seen a patient that has all these thing going on and can't really explain. He really hasn't a clue of what is wrong. The latest thing that is really putting me over the edge is this rash. I get a rash every time is gets hot. I don't have to been in the sun. The heat makes my arms, chest, and thighs break out, nothing else. So within a five minutes on being outside I look like I am covered in hives. So I told my dr this he said he will check my iron...maybe that is why I am having all these problems. I am so frustrated. I feel like every week it is something. Has anyone every had a bad year?!? How did you get through?!? Is there something I am missing? Is there a tests or medicine I should ask my dr for?!? So frustrated..any words of wisdom would be great<img src="i/expressions/face-icon-small-smile.gif" border="0">

Pepsi
31-CF-CFRD-Cleveland, Oh

phutton · Jul 27, 2008

Happy Sunday!!!

I am so frustrated. I have had the worst year ever. I just want answers. I will give everyone a quick overview of the past year. Everything started getting complicated last summer. My breathing test started to decline with no explanation, base line FEV1 in 80's. After 6 months(October)I was diagnosed with Aspergillus. In hosptial twice from May to October<img src="i/expressions/face-icon-small-sad.gif" border="0"> The steroids for the aspergillus took my borderline CFRD into CFRD. Put me the hospital in December. So 5th time for the year. In my lifetime I have been in 4 times EVER. Ok, so another week in the hospital. The back in the hospital in March. Huge cyst about the size of a tennis ball on my spleen...removed the cysts and most of my spleen. My breathing test continue to be out of check. I was back to "normal" in June with FEV1. Went to clinic last week....numbers horrible again. Went to ER last week with really bad stomach pain...possible pancreas. I just feel like I am on this horrible rollercoaster! My doctor keeps saying he has never seen a patient that has all these thing going on and can't really explain. He really hasn't a clue of what is wrong. The latest thing that is really putting me over the edge is this rash. I get a rash every time is gets hot. I don't have to been in the sun. The heat makes my arms, chest, and thighs break out, nothing else. So within a five minutes on being outside I look like I am covered in hives. So I told my dr this he said he will check my iron...maybe that is why I am having all these problems. I am so frustrated. I feel like every week it is something. Has anyone every had a bad year?!? How did you get through?!? Is there something I am missing? Is there a tests or medicine I should ask my dr for?!? So frustrated..any words of wisdom would be great<img src="i/expressions/face-icon-small-smile.gif" border="0">

Pepsi
31-CF-CFRD-Cleveland, Oh

phutton · Jul 27, 2008

Happy Sunday!!!

I am so frustrated. I have had the worst year ever. I just want answers. I will give everyone a quick overview of the past year. Everything started getting complicated last summer. My breathing test started to decline with no explanation, base line FEV1 in 80's. After 6 months(October)I was diagnosed with Aspergillus. In hosptial twice from May to October<img src="i/expressions/face-icon-small-sad.gif" border="0"> The steroids for the aspergillus took my borderline CFRD into CFRD. Put me the hospital in December. So 5th time for the year. In my lifetime I have been in 4 times EVER. Ok, so another week in the hospital. The back in the hospital in March. Huge cyst about the size of a tennis ball on my spleen...removed the cysts and most of my spleen. My breathing test continue to be out of check. I was back to "normal" in June with FEV1. Went to clinic last week....numbers horrible again. Went to ER last week with really bad stomach pain...possible pancreas. I just feel like I am on this horrible rollercoaster! My doctor keeps saying he has never seen a patient that has all these thing going on and can't really explain. He really hasn't a clue of what is wrong. The latest thing that is really putting me over the edge is this rash. I get a rash every time is gets hot. I don't have to been in the sun. The heat makes my arms, chest, and thighs break out, nothing else. So within a five minutes on being outside I look like I am covered in hives. So I told my dr this he said he will check my iron...maybe that is why I am having all these problems. I am so frustrated. I feel like every week it is something. Has anyone every had a bad year?!? How did you get through?!? Is there something I am missing? Is there a tests or medicine I should ask my dr for?!? So frustrated..any words of wisdom would be great<img src="i/expressions/face-icon-small-smile.gif" border="0">

Pepsi
31-CF-CFRD-Cleveland, Oh

phutton · Jul 27, 2008

Happy Sunday!!!

I am so frustrated. I have had the worst year ever. I just want answers. I will give everyone a quick overview of the past year. Everything started getting complicated last summer. My breathing test started to decline with no explanation, base line FEV1 in 80's. After 6 months(October)I was diagnosed with Aspergillus. In hosptial twice from May to October<img src="i/expressions/face-icon-small-sad.gif" border="0"> The steroids for the aspergillus took my borderline CFRD into CFRD. Put me the hospital in December. So 5th time for the year. In my lifetime I have been in 4 times EVER. Ok, so another week in the hospital. The back in the hospital in March. Huge cyst about the size of a tennis ball on my spleen...removed the cysts and most of my spleen. My breathing test continue to be out of check. I was back to "normal" in June with FEV1. Went to clinic last week....numbers horrible again. Went to ER last week with really bad stomach pain...possible pancreas. I just feel like I am on this horrible rollercoaster! My doctor keeps saying he has never seen a patient that has all these thing going on and can't really explain. He really hasn't a clue of what is wrong. The latest thing that is really putting me over the edge is this rash. I get a rash every time is gets hot. I don't have to been in the sun. The heat makes my arms, chest, and thighs break out, nothing else. So within a five minutes on being outside I look like I am covered in hives. So I told my dr this he said he will check my iron...maybe that is why I am having all these problems. I am so frustrated. I feel like every week it is something. Has anyone every had a bad year?!? How did you get through?!? Is there something I am missing? Is there a tests or medicine I should ask my dr for?!? So frustrated..any words of wisdom would be great<img src="i/expressions/face-icon-small-smile.gif" border="0">

Pepsi
31-CF-CFRD-Cleveland, Oh

phutton · Jul 27, 2008

Happy Sunday!!!
 
 I am so frustrated. I have had the worst year ever. I just want answers. I will give everyone a quick overview of the past year. Everything started getting complicated last summer. My breathing test started to decline with no explanation, base line FEV1 in 80's. After 6 months(October)I was diagnosed with Aspergillus. In hosptial twice from May to October<img src="i/expressions/face-icon-small-sad.gif" border="0"> The steroids for the aspergillus took my borderline CFRD into CFRD. Put me the hospital in December. So 5th time for the year. In my lifetime I have been in 4 times EVER. Ok, so another week in the hospital. The back in the hospital in March. Huge cyst about the size of a tennis ball on my spleen...removed the cysts and most of my spleen. My breathing test continue to be out of check. I was back to "normal" in June with FEV1. Went to clinic last week....numbers horrible again. Went to ER last week with really bad stomach pain...possible pancreas. I just feel like I am on this horrible rollercoaster! My doctor keeps saying he has never seen a patient that has all these thing going on and can't really explain. He really hasn't a clue of what is wrong. The latest thing that is really putting me over the edge is this rash. I get a rash every time is gets hot. I don't have to been in the sun. The heat makes my arms, chest, and thighs break out, nothing else. So within a five minutes on being outside I look like I am covered in hives. So I told my dr this he said he will check my iron...maybe that is why I am having all these problems. I am so frustrated. I feel like every week it is something. Has anyone every had a bad year?!? How did you get through?!? Is there something I am missing? Is there a tests or medicine I should ask my dr for?!? So frustrated..any words of wisdom would be great<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Pepsi
 31-CF-CFRD-Cleveland, Oh

Transplantmommy · Jul 27, 2008

There are many times where I have had one bad year after another. My PFT's fell dramatically in one year from 37% to 15% and that's when I finally had the transplants. I also have had troubles with my spleen (which is part of the reason for the liver Tx), but the spleen is really not much better.

Anyway, there were many times where I was in the hospital about 5-6 times a year....it's horrible! I have also been life-flighted to Cleveland Clinic three times in one year. The last one was right before the Tx. Well anyway, I had my double lung and liver Tx in January 2007, had a surgery for a wire coming through my chest (that they had used to put the sternum back together), ran into colon issues in June 2007 and had to have emergency surgery to remove it, had acute rejection of the lungs, had another surgery in December to attach the small intestine to the rectum, then in March 2008, had another surgery to close the ileostomy (from the colon being removed), and finally ended up back in the hospital a week later because of a bowel obstruction. How did I get through all of this?? I had my family to think about and I looked forward to what I would be able to do in the future once this was all over with.

Since all of this had happened, I have gone to WA (I live in NY), gone to the park a few times with my son, watched my son's first reaction to fireworks this July 4th, hung out with friends, and even found a friend that I hadn't seen or talked to in 10 years and have hung out with him and his family twice now. Next weekend I am going to an amusement park and then the weekend after that we are going to the Renaissance Festival. These are all the things that I have been looking forward to for years and have not been able to do. I am so happy to be doing them now.

As for your rash.....I would think that it might just be a common heat rash. You don't need to be in the sun for that and my son gets them all the time.

You know what else kept me going? Today is my 6th wedding anniversary!! I was not going to let go so quickly and only give my husband a few good years. We have many more to share.

If there is something in your life that you really want to do that you have not been able to, think about that and rach for that to pull yourself through. I hope you feel better soon!

Transplantmommy · Jul 27, 2008

There are many times where I have had one bad year after another. My PFT's fell dramatically in one year from 37% to 15% and that's when I finally had the transplants. I also have had troubles with my spleen (which is part of the reason for the liver Tx), but the spleen is really not much better.

Anyway, there were many times where I was in the hospital about 5-6 times a year....it's horrible! I have also been life-flighted to Cleveland Clinic three times in one year. The last one was right before the Tx. Well anyway, I had my double lung and liver Tx in January 2007, had a surgery for a wire coming through my chest (that they had used to put the sternum back together), ran into colon issues in June 2007 and had to have emergency surgery to remove it, had acute rejection of the lungs, had another surgery in December to attach the small intestine to the rectum, then in March 2008, had another surgery to close the ileostomy (from the colon being removed), and finally ended up back in the hospital a week later because of a bowel obstruction. How did I get through all of this?? I had my family to think about and I looked forward to what I would be able to do in the future once this was all over with.

Since all of this had happened, I have gone to WA (I live in NY), gone to the park a few times with my son, watched my son's first reaction to fireworks this July 4th, hung out with friends, and even found a friend that I hadn't seen or talked to in 10 years and have hung out with him and his family twice now. Next weekend I am going to an amusement park and then the weekend after that we are going to the Renaissance Festival. These are all the things that I have been looking forward to for years and have not been able to do. I am so happy to be doing them now.

As for your rash.....I would think that it might just be a common heat rash. You don't need to be in the sun for that and my son gets them all the time.

You know what else kept me going? Today is my 6th wedding anniversary!! I was not going to let go so quickly and only give my husband a few good years. We have many more to share.

If there is something in your life that you really want to do that you have not been able to, think about that and rach for that to pull yourself through. I hope you feel better soon!

Transplantmommy · Jul 27, 2008

There are many times where I have had one bad year after another. My PFT's fell dramatically in one year from 37% to 15% and that's when I finally had the transplants. I also have had troubles with my spleen (which is part of the reason for the liver Tx), but the spleen is really not much better.

Anyway, there were many times where I was in the hospital about 5-6 times a year....it's horrible! I have also been life-flighted to Cleveland Clinic three times in one year. The last one was right before the Tx. Well anyway, I had my double lung and liver Tx in January 2007, had a surgery for a wire coming through my chest (that they had used to put the sternum back together), ran into colon issues in June 2007 and had to have emergency surgery to remove it, had acute rejection of the lungs, had another surgery in December to attach the small intestine to the rectum, then in March 2008, had another surgery to close the ileostomy (from the colon being removed), and finally ended up back in the hospital a week later because of a bowel obstruction. How did I get through all of this?? I had my family to think about and I looked forward to what I would be able to do in the future once this was all over with.

Since all of this had happened, I have gone to WA (I live in NY), gone to the park a few times with my son, watched my son's first reaction to fireworks this July 4th, hung out with friends, and even found a friend that I hadn't seen or talked to in 10 years and have hung out with him and his family twice now. Next weekend I am going to an amusement park and then the weekend after that we are going to the Renaissance Festival. These are all the things that I have been looking forward to for years and have not been able to do. I am so happy to be doing them now.

As for your rash.....I would think that it might just be a common heat rash. You don't need to be in the sun for that and my son gets them all the time.

You know what else kept me going? Today is my 6th wedding anniversary!! I was not going to let go so quickly and only give my husband a few good years. We have many more to share.

If there is something in your life that you really want to do that you have not been able to, think about that and rach for that to pull yourself through. I hope you feel better soon!

Transplantmommy · Jul 27, 2008

There are many times where I have had one bad year after another. My PFT's fell dramatically in one year from 37% to 15% and that's when I finally had the transplants. I also have had troubles with my spleen (which is part of the reason for the liver Tx), but the spleen is really not much better.

Anyway, there were many times where I was in the hospital about 5-6 times a year....it's horrible! I have also been life-flighted to Cleveland Clinic three times in one year. The last one was right before the Tx. Well anyway, I had my double lung and liver Tx in January 2007, had a surgery for a wire coming through my chest (that they had used to put the sternum back together), ran into colon issues in June 2007 and had to have emergency surgery to remove it, had acute rejection of the lungs, had another surgery in December to attach the small intestine to the rectum, then in March 2008, had another surgery to close the ileostomy (from the colon being removed), and finally ended up back in the hospital a week later because of a bowel obstruction. How did I get through all of this?? I had my family to think about and I looked forward to what I would be able to do in the future once this was all over with.

Since all of this had happened, I have gone to WA (I live in NY), gone to the park a few times with my son, watched my son's first reaction to fireworks this July 4th, hung out with friends, and even found a friend that I hadn't seen or talked to in 10 years and have hung out with him and his family twice now. Next weekend I am going to an amusement park and then the weekend after that we are going to the Renaissance Festival. These are all the things that I have been looking forward to for years and have not been able to do. I am so happy to be doing them now.

As for your rash.....I would think that it might just be a common heat rash. You don't need to be in the sun for that and my son gets them all the time.

You know what else kept me going? Today is my 6th wedding anniversary!! I was not going to let go so quickly and only give my husband a few good years. We have many more to share.

If there is something in your life that you really want to do that you have not been able to, think about that and rach for that to pull yourself through. I hope you feel better soon!

Transplantmommy · Jul 27, 2008

There are many times where I have had one bad year after another. My PFT's fell dramatically in one year from 37% to 15% and that's when I finally had the transplants. I also have had troubles with my spleen (which is part of the reason for the liver Tx), but the spleen is really not much better.
 
 Anyway, there were many times where I was in the hospital about 5-6 times a year....it's horrible! I have also been life-flighted to Cleveland Clinic three times in one year. The last one was right before the Tx. Well anyway, I had my double lung and liver Tx in January 2007, had a surgery for a wire coming through my chest (that they had used to put the sternum back together), ran into colon issues in June 2007 and had to have emergency surgery to remove it, had acute rejection of the lungs, had another surgery in December to attach the small intestine to the rectum, then in March 2008, had another surgery to close the ileostomy (from the colon being removed), and finally ended up back in the hospital a week later because of a bowel obstruction. How did I get through all of this?? I had my family to think about and I looked forward to what I would be able to do in the future once this was all over with.
 
 Since all of this had happened, I have gone to WA (I live in NY), gone to the park a few times with my son, watched my son's first reaction to fireworks this July 4th, hung out with friends, and even found a friend that I hadn't seen or talked to in 10 years and have hung out with him and his family twice now. Next weekend I am going to an amusement park and then the weekend after that we are going to the Renaissance Festival. These are all the things that I have been looking forward to for years and have not been able to do. I am so happy to be doing them now.
 
 As for your rash.....I would think that it might just be a common heat rash. You don't need to be in the sun for that and my son gets them all the time.
 
 You know what else kept me going? Today is my 6th wedding anniversary!! I was not going to let go so quickly and only give my husband a few good years. We have many more to share.
 
 If there is something in your life that you really want to do that you have not been able to, think about that and rach for that to pull yourself through. I hope you feel better soon!

lightNlife · Jul 27, 2008

Sounds exactly like something I went through a couple years ago...the aspergillus, the rash in the sun...the CFRD...the whole 9 yards. Eventually I told the doctor I wanted OFF the steroids. They were causing more problems than they were helping. Now I'm on sporanox for the ABPA and although it hasn't lowered my IgE level very much, at least it keeps things under control and my FEV1 from jumping around.

When I couldn't make heads or tails of what the heck was going on with my CF problems, my case manager at the time looked at me and earnestly said "CF does this. It has it's own agenda." CF is so incredibly frustrating because it's hard to find the right combo of meds that work without causing additional problems. I hope you find some relief. Sorry there are no easy answers.

lightNlife · Jul 27, 2008

Sounds exactly like something I went through a couple years ago...the aspergillus, the rash in the sun...the CFRD...the whole 9 yards. Eventually I told the doctor I wanted OFF the steroids. They were causing more problems than they were helping. Now I'm on sporanox for the ABPA and although it hasn't lowered my IgE level very much, at least it keeps things under control and my FEV1 from jumping around.

When I couldn't make heads or tails of what the heck was going on with my CF problems, my case manager at the time looked at me and earnestly said "CF does this. It has it's own agenda." CF is so incredibly frustrating because it's hard to find the right combo of meds that work without causing additional problems. I hope you find some relief. Sorry there are no easy answers.

lightNlife · Jul 27, 2008

Sounds exactly like something I went through a couple years ago...the aspergillus, the rash in the sun...the CFRD...the whole 9 yards. Eventually I told the doctor I wanted OFF the steroids. They were causing more problems than they were helping. Now I'm on sporanox for the ABPA and although it hasn't lowered my IgE level very much, at least it keeps things under control and my FEV1 from jumping around.

When I couldn't make heads or tails of what the heck was going on with my CF problems, my case manager at the time looked at me and earnestly said "CF does this. It has it's own agenda." CF is so incredibly frustrating because it's hard to find the right combo of meds that work without causing additional problems. I hope you find some relief. Sorry there are no easy answers.

lightNlife · Jul 27, 2008

Sounds exactly like something I went through a couple years ago...the aspergillus, the rash in the sun...the CFRD...the whole 9 yards. Eventually I told the doctor I wanted OFF the steroids. They were causing more problems than they were helping. Now I'm on sporanox for the ABPA and although it hasn't lowered my IgE level very much, at least it keeps things under control and my FEV1 from jumping around.

When I couldn't make heads or tails of what the heck was going on with my CF problems, my case manager at the time looked at me and earnestly said "CF does this. It has it's own agenda." CF is so incredibly frustrating because it's hard to find the right combo of meds that work without causing additional problems. I hope you find some relief. Sorry there are no easy answers.

lightNlife · Jul 27, 2008

Sounds exactly like something I went through a couple years ago...the aspergillus, the rash in the sun...the CFRD...the whole 9 yards. Eventually I told the doctor I wanted OFF the steroids. They were causing more problems than they were helping. Now I'm on sporanox for the ABPA and although it hasn't lowered my IgE level very much, at least it keeps things under control and my FEV1 from jumping around.
 
 When I couldn't make heads or tails of what the heck was going on with my CF problems, my case manager at the time looked at me and earnestly said "CF does this. It has it's own agenda." CF is so incredibly frustrating because it's hard to find the right combo of meds that work without causing additional problems. I hope you find some relief. Sorry there are no easy answers.

MicheleGazelle · Jul 27, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: phutton
Has anyone every had a bad year?!? How did you get through?!? Is there something I am missing? Is there a tests or medicine I should ask my dr for?!? So frustrated..any words of wisdom would be great<img src="i/expressions/face-icon-small-smile.gif" border="0">
</end quote></div>

Hi Pepsi,
Some things that occur to me:
Aspergillus is a fungus and my understanding is that fungal infections often occur due to taking lots of antibiotics (which pwcf routinely take). So it would seem to me that this involves the same mechanism that causes yeast overgrowth with taking antibiotics: The antibiotics kill off the good gut flora and alter the body chemistry in addition to killing the infection. Yeast thrives in that environment in part because killing the good gut flora removes competition, in part because the altered body chemistry is a better environment for it, and in part because it feeds on the dead bacteria. So it would seem to me that working on your gut ecology and body chemistry would be a good first step.

Here is something I recently posted in a different thread that pertains to gut ecology:
-------------
Twice, I have eaten an anti-yeast diet for several months:
Organic yogurt twice a day (I typically eat Yo-Baby from Stonyfield Farms).
Avoid sugars and carbs.
Avoid things that contain or promote yeast, like yeast breads, pizza, cheese, pickles (and sugars and carbs).
Eat lettuce every day or at least 4 days a week.
Have lots of grilled or baked meats and raw or lightly cooked veggies.

In addition to the anti-yeast diet, the following supplements have helped my gut:
sea salt, coconut oil, glyconutrients, aloe vera, gelatin (pour a packet in hot water and add a little fruit juice for flavor, stir vigorously and drink while still fairly warm) and any nutrients I happened to be deficient in at any particular time.

I have also found that anti-fungal herbs, like oil of oregano, can help combat yeast overgrowth.
---------------

For some general thoughts on body chemistry and CF, I will suggest this link: <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/ph.shtml">PH Balance</a>

I had a really bad year where I was constantly at death's door and got through it with lots of hot baths, drinking a nightcap every night (because I was being denied treatment and it helped knock back the pain and infection -- I didn't yet have a diagnosis, so I am NOT recommending this), and trying lots of different herbal treatments sort of willy-nilly because I didn't really know what I was doing. I managed to avoid being hospitalized but I worked very hard to avoid it because I was convinced that if I ended up in the hospital, I would die. As I said, I didn't yet have a diagnosis and doctors were saying things like "we can't find anything physically wrong with you. would you like to speak with a psychiatrist?" and "have you tried stopping the antibiotics? maybe that's what's making you sick." Since they had no clue what was going on and were so willing to dismiss me as a nutcase, I really felt going in the hospital would only serve to deprive me of the hot baths and herbs (and, yes, nightcap) that were all that was keeping me alive at that point.

Then I was finally diagnosed with CF and their new song and dance as to why they wouldn't really treat me was "people like you don't get well. symptom management is the name of the game." By then, the hot baths and herbs and such were working to actually get me well and I began to get better at figuring out what worked for me. My CF doctor began scheduling my appointments further and further apart. His logic: "You're getting better on your own and I'm not really doing anything for you." He wasn't even curious as to how I was getting better. So I was on my own.

I eventually began throwing out (or giving away) particle-board furniture, books, anything in the apartment that smelled musty, etc. I had an epiphany one day that the more money my (ex)husband made, the more stuff we owned and the more stuff we owned, the sicker I got. I wanted to get rid of the stuff making me ill. I ultimately got rid of essentially everything I ever owned (I still have a few important papers in the shed that I am still working on replacing) and now live a spartan lifestyle with few possessions. It has helped me get off all the prescription drugs I used to be on and the hole in my left lung has closed. I am now well enough to work a full-time paid job for the first time in my life.

I would try wiping the rash down with peroxide or diet tonic water (it contains quinine) or coconut oil. When I have die-off rashes, wiping them down with one of those helps get the rash under control and gets me some relief from itching. I have recommended this to someone else and they said it worked very well. So it's worth a shot.

That's the gist of what occurs to me for now. Good luck with this.

MicheleGazelle · Jul 27, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: phutton
Has anyone every had a bad year?!? How did you get through?!? Is there something I am missing? Is there a tests or medicine I should ask my dr for?!? So frustrated..any words of wisdom would be great<img src="i/expressions/face-icon-small-smile.gif" border="0">
</end quote></div>

Hi Pepsi,
Some things that occur to me:
Aspergillus is a fungus and my understanding is that fungal infections often occur due to taking lots of antibiotics (which pwcf routinely take). So it would seem to me that this involves the same mechanism that causes yeast overgrowth with taking antibiotics: The antibiotics kill off the good gut flora and alter the body chemistry in addition to killing the infection. Yeast thrives in that environment in part because killing the good gut flora removes competition, in part because the altered body chemistry is a better environment for it, and in part because it feeds on the dead bacteria. So it would seem to me that working on your gut ecology and body chemistry would be a good first step.

Here is something I recently posted in a different thread that pertains to gut ecology:
-------------
Twice, I have eaten an anti-yeast diet for several months:
Organic yogurt twice a day (I typically eat Yo-Baby from Stonyfield Farms).
Avoid sugars and carbs.
Avoid things that contain or promote yeast, like yeast breads, pizza, cheese, pickles (and sugars and carbs).
Eat lettuce every day or at least 4 days a week.
Have lots of grilled or baked meats and raw or lightly cooked veggies.

In addition to the anti-yeast diet, the following supplements have helped my gut:
sea salt, coconut oil, glyconutrients, aloe vera, gelatin (pour a packet in hot water and add a little fruit juice for flavor, stir vigorously and drink while still fairly warm) and any nutrients I happened to be deficient in at any particular time.

I have also found that anti-fungal herbs, like oil of oregano, can help combat yeast overgrowth.
---------------

For some general thoughts on body chemistry and CF, I will suggest this link: <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/ph.shtml">PH Balance</a>

I had a really bad year where I was constantly at death's door and got through it with lots of hot baths, drinking a nightcap every night (because I was being denied treatment and it helped knock back the pain and infection -- I didn't yet have a diagnosis, so I am NOT recommending this), and trying lots of different herbal treatments sort of willy-nilly because I didn't really know what I was doing. I managed to avoid being hospitalized but I worked very hard to avoid it because I was convinced that if I ended up in the hospital, I would die. As I said, I didn't yet have a diagnosis and doctors were saying things like "we can't find anything physically wrong with you. would you like to speak with a psychiatrist?" and "have you tried stopping the antibiotics? maybe that's what's making you sick." Since they had no clue what was going on and were so willing to dismiss me as a nutcase, I really felt going in the hospital would only serve to deprive me of the hot baths and herbs (and, yes, nightcap) that were all that was keeping me alive at that point.

Then I was finally diagnosed with CF and their new song and dance as to why they wouldn't really treat me was "people like you don't get well. symptom management is the name of the game." By then, the hot baths and herbs and such were working to actually get me well and I began to get better at figuring out what worked for me. My CF doctor began scheduling my appointments further and further apart. His logic: "You're getting better on your own and I'm not really doing anything for you." He wasn't even curious as to how I was getting better. So I was on my own.

I eventually began throwing out (or giving away) particle-board furniture, books, anything in the apartment that smelled musty, etc. I had an epiphany one day that the more money my (ex)husband made, the more stuff we owned and the more stuff we owned, the sicker I got. I wanted to get rid of the stuff making me ill. I ultimately got rid of essentially everything I ever owned (I still have a few important papers in the shed that I am still working on replacing) and now live a spartan lifestyle with few possessions. It has helped me get off all the prescription drugs I used to be on and the hole in my left lung has closed. I am now well enough to work a full-time paid job for the first time in my life.

I would try wiping the rash down with peroxide or diet tonic water (it contains quinine) or coconut oil. When I have die-off rashes, wiping them down with one of those helps get the rash under control and gets me some relief from itching. I have recommended this to someone else and they said it worked very well. So it's worth a shot.

That's the gist of what occurs to me for now. Good luck with this.

MicheleGazelle · Jul 27, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: phutton
Has anyone every had a bad year?!? How did you get through?!? Is there something I am missing? Is there a tests or medicine I should ask my dr for?!? So frustrated..any words of wisdom would be great<img src="i/expressions/face-icon-small-smile.gif" border="0">
</end quote></div>

Hi Pepsi,
Some things that occur to me:
Aspergillus is a fungus and my understanding is that fungal infections often occur due to taking lots of antibiotics (which pwcf routinely take). So it would seem to me that this involves the same mechanism that causes yeast overgrowth with taking antibiotics: The antibiotics kill off the good gut flora and alter the body chemistry in addition to killing the infection. Yeast thrives in that environment in part because killing the good gut flora removes competition, in part because the altered body chemistry is a better environment for it, and in part because it feeds on the dead bacteria. So it would seem to me that working on your gut ecology and body chemistry would be a good first step.

Here is something I recently posted in a different thread that pertains to gut ecology:
-------------
Twice, I have eaten an anti-yeast diet for several months:
Organic yogurt twice a day (I typically eat Yo-Baby from Stonyfield Farms).
Avoid sugars and carbs.
Avoid things that contain or promote yeast, like yeast breads, pizza, cheese, pickles (and sugars and carbs).
Eat lettuce every day or at least 4 days a week.
Have lots of grilled or baked meats and raw or lightly cooked veggies.

In addition to the anti-yeast diet, the following supplements have helped my gut:
sea salt, coconut oil, glyconutrients, aloe vera, gelatin (pour a packet in hot water and add a little fruit juice for flavor, stir vigorously and drink while still fairly warm) and any nutrients I happened to be deficient in at any particular time.

I have also found that anti-fungal herbs, like oil of oregano, can help combat yeast overgrowth.
---------------

For some general thoughts on body chemistry and CF, I will suggest this link: <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/ph.shtml">PH Balance</a>

I had a really bad year where I was constantly at death's door and got through it with lots of hot baths, drinking a nightcap every night (because I was being denied treatment and it helped knock back the pain and infection -- I didn't yet have a diagnosis, so I am NOT recommending this), and trying lots of different herbal treatments sort of willy-nilly because I didn't really know what I was doing. I managed to avoid being hospitalized but I worked very hard to avoid it because I was convinced that if I ended up in the hospital, I would die. As I said, I didn't yet have a diagnosis and doctors were saying things like "we can't find anything physically wrong with you. would you like to speak with a psychiatrist?" and "have you tried stopping the antibiotics? maybe that's what's making you sick." Since they had no clue what was going on and were so willing to dismiss me as a nutcase, I really felt going in the hospital would only serve to deprive me of the hot baths and herbs (and, yes, nightcap) that were all that was keeping me alive at that point.

Then I was finally diagnosed with CF and their new song and dance as to why they wouldn't really treat me was "people like you don't get well. symptom management is the name of the game." By then, the hot baths and herbs and such were working to actually get me well and I began to get better at figuring out what worked for me. My CF doctor began scheduling my appointments further and further apart. His logic: "You're getting better on your own and I'm not really doing anything for you." He wasn't even curious as to how I was getting better. So I was on my own.

I eventually began throwing out (or giving away) particle-board furniture, books, anything in the apartment that smelled musty, etc. I had an epiphany one day that the more money my (ex)husband made, the more stuff we owned and the more stuff we owned, the sicker I got. I wanted to get rid of the stuff making me ill. I ultimately got rid of essentially everything I ever owned (I still have a few important papers in the shed that I am still working on replacing) and now live a spartan lifestyle with few possessions. It has helped me get off all the prescription drugs I used to be on and the hole in my left lung has closed. I am now well enough to work a full-time paid job for the first time in my life.

I would try wiping the rash down with peroxide or diet tonic water (it contains quinine) or coconut oil. When I have die-off rashes, wiping them down with one of those helps get the rash under control and gets me some relief from itching. I have recommended this to someone else and they said it worked very well. So it's worth a shot.

That's the gist of what occurs to me for now. Good luck with this.

MicheleGazelle · Jul 27, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: phutton
Has anyone every had a bad year?!? How did you get through?!? Is there something I am missing? Is there a tests or medicine I should ask my dr for?!? So frustrated..any words of wisdom would be great<img src="i/expressions/face-icon-small-smile.gif" border="0">
</end quote>

Hi Pepsi,
Some things that occur to me:
Aspergillus is a fungus and my understanding is that fungal infections often occur due to taking lots of antibiotics (which pwcf routinely take). So it would seem to me that this involves the same mechanism that causes yeast overgrowth with taking antibiotics: The antibiotics kill off the good gut flora and alter the body chemistry in addition to killing the infection. Yeast thrives in that environment in part because killing the good gut flora removes competition, in part because the altered body chemistry is a better environment for it, and in part because it feeds on the dead bacteria. So it would seem to me that working on your gut ecology and body chemistry would be a good first step.

Here is something I recently posted in a different thread that pertains to gut ecology:
-------------
Twice, I have eaten an anti-yeast diet for several months:
Organic yogurt twice a day (I typically eat Yo-Baby from Stonyfield Farms).
Avoid sugars and carbs.
Avoid things that contain or promote yeast, like yeast breads, pizza, cheese, pickles (and sugars and carbs).
Eat lettuce every day or at least 4 days a week.
Have lots of grilled or baked meats and raw or lightly cooked veggies.

In addition to the anti-yeast diet, the following supplements have helped my gut:
sea salt, coconut oil, glyconutrients, aloe vera, gelatin (pour a packet in hot water and add a little fruit juice for flavor, stir vigorously and drink while still fairly warm) and any nutrients I happened to be deficient in at any particular time.

I have also found that anti-fungal herbs, like oil of oregano, can help combat yeast overgrowth.
---------------

For some general thoughts on body chemistry and CF, I will suggest this link: <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/ph.shtml">PH Balance</a>

I had a really bad year where I was constantly at death's door and got through it with lots of hot baths, drinking a nightcap every night (because I was being denied treatment and it helped knock back the pain and infection -- I didn't yet have a diagnosis, so I am NOT recommending this), and trying lots of different herbal treatments sort of willy-nilly because I didn't really know what I was doing. I managed to avoid being hospitalized but I worked very hard to avoid it because I was convinced that if I ended up in the hospital, I would die. As I said, I didn't yet have a diagnosis and doctors were saying things like "we can't find anything physically wrong with you. would you like to speak with a psychiatrist?" and "have you tried stopping the antibiotics? maybe that's what's making you sick." Since they had no clue what was going on and were so willing to dismiss me as a nutcase, I really felt going in the hospital would only serve to deprive me of the hot baths and herbs (and, yes, nightcap) that were all that was keeping me alive at that point.

Then I was finally diagnosed with CF and their new song and dance as to why they wouldn't really treat me was "people like you don't get well. symptom management is the name of the game." By then, the hot baths and herbs and such were working to actually get me well and I began to get better at figuring out what worked for me. My CF doctor began scheduling my appointments further and further apart. His logic: "You're getting better on your own and I'm not really doing anything for you." He wasn't even curious as to how I was getting better. So I was on my own.

I eventually began throwing out (or giving away) particle-board furniture, books, anything in the apartment that smelled musty, etc. I had an epiphany one day that the more money my (ex)husband made, the more stuff we owned and the more stuff we owned, the sicker I got. I wanted to get rid of the stuff making me ill. I ultimately got rid of essentially everything I ever owned (I still have a few important papers in the shed that I am still working on replacing) and now live a spartan lifestyle with few possessions. It has helped me get off all the prescription drugs I used to be on and the hole in my left lung has closed. I am now well enough to work a full-time paid job for the first time in my life.

I would try wiping the rash down with peroxide or diet tonic water (it contains quinine) or coconut oil. When I have die-off rashes, wiping them down with one of those helps get the rash under control and gets me some relief from itching. I have recommended this to someone else and they said it worked very well. So it's worth a shot.

That's the gist of what occurs to me for now. Good luck with this.

MicheleGazelle · Jul 27, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: phutton
 Has anyone every had a bad year?!? How did you get through?!? Is there something I am missing? Is there a tests or medicine I should ask my dr for?!? So frustrated..any words of wisdom would be great<img src="i/expressions/face-icon-small-smile.gif" border="0">
 </end quote>
 
 Hi Pepsi,
 Some things that occur to me:
 Aspergillus is a fungus and my understanding is that fungal infections often occur due to taking lots of antibiotics (which pwcf routinely take). So it would seem to me that this involves the same mechanism that causes yeast overgrowth with taking antibiotics: The antibiotics kill off the good gut flora and alter the body chemistry in addition to killing the infection. Yeast thrives in that environment in part because killing the good gut flora removes competition, in part because the altered body chemistry is a better environment for it, and in part because it feeds on the dead bacteria. So it would seem to me that working on your gut ecology and body chemistry would be a good first step.
 
 Here is something I recently posted in a different thread that pertains to gut ecology:
 -------------
 Twice, I have eaten an anti-yeast diet for several months:
 Organic yogurt twice a day (I typically eat Yo-Baby from Stonyfield Farms).
 Avoid sugars and carbs.
 Avoid things that contain or promote yeast, like yeast breads, pizza, cheese, pickles (and sugars and carbs).
 Eat lettuce every day or at least 4 days a week.
 Have lots of grilled or baked meats and raw or lightly cooked veggies.
 
 In addition to the anti-yeast diet, the following supplements have helped my gut:
 sea salt, coconut oil, glyconutrients, aloe vera, gelatin (pour a packet in hot water and add a little fruit juice for flavor, stir vigorously and drink while still fairly warm) and any nutrients I happened to be deficient in at any particular time.
 
 I have also found that anti-fungal herbs, like oil of oregano, can help combat yeast overgrowth.
 ---------------
 
 For some general thoughts on body chemistry and CF, I will suggest this link: <a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/ph.shtml">PH Balance</a>
 
 
 I had a really bad year where I was constantly at death's door and got through it with lots of hot baths, drinking a nightcap every night (because I was being denied treatment and it helped knock back the pain and infection -- I didn't yet have a diagnosis, so I am NOT recommending this), and trying lots of different herbal treatments sort of willy-nilly because I didn't really know what I was doing. I managed to avoid being hospitalized but I worked very hard to avoid it because I was convinced that if I ended up in the hospital, I would die. As I said, I didn't yet have a diagnosis and doctors were saying things like "we can't find anything physically wrong with you. would you like to speak with a psychiatrist?" and "have you tried stopping the antibiotics? maybe that's what's making you sick." Since they had no clue what was going on and were so willing to dismiss me as a nutcase, I really felt going in the hospital would only serve to deprive me of the hot baths and herbs (and, yes, nightcap) that were all that was keeping me alive at that point.
 
 Then I was finally diagnosed with CF and their new song and dance as to why they wouldn't really treat me was "people like you don't get well. symptom management is the name of the game." By then, the hot baths and herbs and such were working to actually get me well and I began to get better at figuring out what worked for me. My CF doctor began scheduling my appointments further and further apart. His logic: "You're getting better on your own and I'm not really doing anything for you." He wasn't even curious as to how I was getting better. So I was on my own.
 
 I eventually began throwing out (or giving away) particle-board furniture, books, anything in the apartment that smelled musty, etc. I had an epiphany one day that the more money my (ex)husband made, the more stuff we owned and the more stuff we owned, the sicker I got. I wanted to get rid of the stuff making me ill. I ultimately got rid of essentially everything I ever owned (I still have a few important papers in the shed that I am still working on replacing) and now live a spartan lifestyle with few possessions. It has helped me get off all the prescription drugs I used to be on and the hole in my left lung has closed. I am now well enough to work a full-time paid job for the first time in my life.
 
 I would try wiping the rash down with peroxide or diet tonic water (it contains quinine) or coconut oil. When I have die-off rashes, wiping them down with one of those helps get the rash under control and gets me some relief from itching. I have recommended this to someone else and they said it worked very well. So it's worth a shot.
 
 That's the gist of what occurs to me for now. Good luck with this.

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