Alternative medicine - Aspergillus

[Tamarilla]

Hi all

I have a 6 year old daughter with cf who is currently battling aspergillus in the lungs. She has had an IV in Christmas and has been on sporanox/itraconazol for 3 months now, but unfortunately the fungus is still there.

Now she changes to Noxafil and salt inhalation - on top of her normal regime which consists of Pepmask, ADEK Multivitamin, creons and pulmozyme. She has no chronic infections, no asthma or diabetes and her digestion is remarkably good.

I'm a trained Naturopath and already give her an array of supplements:

NDS Probiotic S-60-nrgy (especially good for clostridium diff. and fungi)
Magnesium, vitamin C, Chromium, Selenium, B6 and Mega B, Chlorella, oregano inhalations, fish oil, garlic capsules, Pau Darco/Ipe roxo tincture, turmeric, mullein, thyme and lots of japanese matcha tea.

I am really surprised of how resilient this aspergillus is. Has anyone experienced this? And could you advice me as to what has worked for you?

Best regards,
Tamarilla

 

[Tamarilla]

Hi all

I have a 6 year old daughter with cf who is currently battling aspergillus in the lungs. She has had an IV in Christmas and has been on sporanox/itraconazol for 3 months now, but unfortunately the fungus is still there.

Now she changes to Noxafil and salt inhalation - on top of her normal regime which consists of Pepmask, ADEK Multivitamin, creons and pulmozyme. She has no chronic infections, no asthma or diabetes and her digestion is remarkably good.

I'm a trained Naturopath and already give her an array of supplements:

NDS Probiotic S-60-nrgy (especially good for clostridium diff. and fungi)
Magnesium, vitamin C, Chromium, Selenium, B6 and Mega B, Chlorella, oregano inhalations, fish oil, garlic capsules, Pau Darco/Ipe roxo tincture, turmeric, mullein, thyme and lots of japanese matcha tea.

I am really surprised of how resilient this aspergillus is. Has anyone experienced this? And could you advice me as to what has worked for you?

Best regards,
Tamarilla

 

[Tamarilla]

Hi all
<br />
<br />I have a 6 year old daughter with cf who is currently battling aspergillus in the lungs. She has had an IV in Christmas and has been on sporanox/itraconazol for 3 months now, but unfortunately the fungus is still there.
<br />
<br />Now she changes to Noxafil and salt inhalation - on top of her normal regime which consists of Pepmask, ADEK Multivitamin, creons and pulmozyme. She has no chronic infections, no asthma or diabetes and her digestion is remarkably good.
<br />
<br />I'm a trained Naturopath and already give her an array of supplements:
<br />
<br />NDS Probiotic S-60-nrgy (especially good for clostridium diff. and fungi)
<br />Magnesium, vitamin C, Chromium, Selenium, B6 and Mega B, Chlorella, oregano inhalations, fish oil, garlic capsules, Pau Darco/Ipe roxo tincture, turmeric, mullein, thyme and lots of japanese matcha tea.
<br />
<br />I am really surprised of how resilient this aspergillus is. Has anyone experienced this? And could you advice me as to what has worked for you?
<br />
<br />Best regards,
<br />Tamarilla

 

[pjspiegle]

It took my son, Nathan, almost a year and a half of ulternating between itraconazole and fuconazole before he finally stopped growing the aspergillis. We had been free of it for a little more than 2 years and we just found out 2 days ago that he is growing another fungus, tricosporon ba(something) and might be worse than the aspergillis. We are waiting to find out how they are going to treat it and when. The doc was saying that they don't normally treat it until it grows out at least one more time. 17+ years of dealing with CF and I still don't get why they wait to treat these serious things till they grow it 2 or 3 times and then wonder why some of the outcomes are so devestating for the patient and families. (I know sometimes the outcomes are good but sometimes they aren't)

 

[pjspiegle]

It took my son, Nathan, almost a year and a half of ulternating between itraconazole and fuconazole before he finally stopped growing the aspergillis. We had been free of it for a little more than 2 years and we just found out 2 days ago that he is growing another fungus, tricosporon ba(something) and might be worse than the aspergillis. We are waiting to find out how they are going to treat it and when. The doc was saying that they don't normally treat it until it grows out at least one more time. 17+ years of dealing with CF and I still don't get why they wait to treat these serious things till they grow it 2 or 3 times and then wonder why some of the outcomes are so devestating for the patient and families. (I know sometimes the outcomes are good but sometimes they aren't)

 

[pjspiegle]

It took my son, Nathan, almost a year and a half of ulternating between itraconazole and fuconazole before he finally stopped growing the aspergillis. We had been free of it for a little more than 2 years and we just found out 2 days ago that he is growing another fungus, tricosporon ba(something) and might be worse than the aspergillis. We are waiting to find out how they are going to treat it and when. The doc was saying that they don't normally treat it until it grows out at least one more time. 17+ years of dealing with CF and I still don't get why they wait to treat these serious things till they grow it 2 or 3 times and then wonder why some of the outcomes are so devestating for the patient and families. (I know sometimes the outcomes are good but sometimes they aren't)

 

[ajc41977]

Any thoughts on pseudomonas aeruginosa? My son is 5 and has cultured it for 3 yrs off and on. I am a little concerned with the amount of TOBI already? Thanks

 

[ajc41977]

Any thoughts on pseudomonas aeruginosa? My son is 5 and has cultured it for 3 yrs off and on. I am a little concerned with the amount of TOBI already? Thanks

 

[ajc41977]

Any thoughts on pseudomonas aeruginosa? My son is 5 and has cultured it for 3 yrs off and on. I am a little concerned with the amount of TOBI already? Thanks

 

[momtoemily]

Hi, my daughter Emily is 10 and we just started treatment for aspergillus...she started growing it after a 6 week treatment for mycobacteria abscessus....lung function dropped to 74% so we did a bronch and figured out the m. abscessus and aspergillus were growing still, so we just started IV antibiotics and itraconozole for the aspergillus. Met with my doc today and she prefers Emily use the liquid form as it is more effective when they are also taking prevacid. So, I am at the beginning stages of this aspergillus too, but this is what we are doing....

 

[momtoemily]

Hi, my daughter Emily is 10 and we just started treatment for aspergillus...she started growing it after a 6 week treatment for mycobacteria abscessus....lung function dropped to 74% so we did a bronch and figured out the m. abscessus and aspergillus were growing still, so we just started IV antibiotics and itraconozole for the aspergillus. Met with my doc today and she prefers Emily use the liquid form as it is more effective when they are also taking prevacid. So, I am at the beginning stages of this aspergillus too, but this is what we are doing....

 

[momtoemily]

Hi, my daughter Emily is 10 and we just started treatment for aspergillus...she started growing it after a 6 week treatment for mycobacteria abscessus....lung function dropped to 74% so we did a bronch and figured out the m. abscessus and aspergillus were growing still, so we just started IV antibiotics and itraconozole for the aspergillus. Met with my doc today and she prefers Emily use the liquid form as it is more effective when they are also taking prevacid. So, I am at the beginning stages of this aspergillus too, but this is what we are doing....

 

[dmarie781]

Well my daughter had the one and only case of her Aspergillus moving from her lungs to her discs in her back. It took 5 months to figure out it was a fungul infection and had eroded 1 disc entirely and was working on another. We went through 6 months of extreme stress and she was in excrucating pain. They had to reconstruct her L4 and L5 through the front. Quite an ordeal. i wish there were more ways to eradicate this fungus as I am so worried it could happen again.

 

[dmarie781]

Well my daughter had the one and only case of her Aspergillus moving from her lungs to her discs in her back. It took 5 months to figure out it was a fungul infection and had eroded 1 disc entirely and was working on another. We went through 6 months of extreme stress and she was in excrucating pain. They had to reconstruct her L4 and L5 through the front. Quite an ordeal. i wish there were more ways to eradicate this fungus as I am so worried it could happen again.

 

[dmarie781]

Well my daughter had the one and only case of her Aspergillus moving from her lungs to her discs in her back. It took 5 months to figure out it was a fungul infection and had eroded 1 disc entirely and was working on another. We went through 6 months of extreme stress and she was in excrucating pain. They had to reconstruct her L4 and L5 through the front. Quite an ordeal. i wish there were more ways to eradicate this fungus as I am so worried it could happen again.

 

[dmarie781]

Well my daughter had the one and only case of her Aspergillus moving from her lungs to her discs in her back. It took 5 months to figure out it was a fungul infection and had eroded 1 disc entirely and was working on another. We went through 6 months of extreme stress and she was in excrucating pain. They had to reconstruct her L4 and L5 through the front. Quite an ordeal. i wish there were more ways to eradicate this fungus as I am so worried it could happen again.

 

[Anomie]

My daughter tends to alternate between pseudo and aspergillus. When she's off tobi the pseudo takes over and when she goes back on the aspergillus dominates her lungs. So far they've done a pretty good job of keeping each others numbers low and our doctor has advised us not to treat the fungus until it becomes a problem.

 

[Anomie]

My daughter tends to alternate between pseudo and aspergillus. When she's off tobi the pseudo takes over and when she goes back on the aspergillus dominates her lungs. So far they've done a pretty good job of keeping each others numbers low and our doctor has advised us not to treat the fungus until it becomes a problem.

 

[Mom2Brinly]

Hi- My 7 yo with CF has been fighting 2 kinds of aspergillus -- terreous and fumegous (sp). I am a beekeeper and have been giving her a bee propolis tincture from our hive. It seems to have kept it at bay? She hasn't cultured it and she only really cultured it with a broch in the hospital. So it is obviously is deep in her lungs, which my CF doctors would not treat so with some research i decided to treat it myself w/ alternative medicine!! The best natural medicine to fight aspergillus in my research was found in my backyard! It can't hurt her- Egyptians have used it...google it!! I am thinking about bottling more up! I give it to her in her gtube to she doesn't even know <img src="i/expressions/face-icon-small-smile.gif" border="0">

Blythe
Mom2Brinly
7yo w/CF
10yo w/out CF
5yo w/out CF

 

[Mom2Brinly]

Hi- My 7 yo with CF has been fighting 2 kinds of aspergillus -- terreous and fumegous (sp). I am a beekeeper and have been giving her a bee propolis tincture from our hive. It seems to have kept it at bay? She hasn't cultured it and she only really cultured it with a broch in the hospital. So it is obviously is deep in her lungs, which my CF doctors would not treat so with some research i decided to treat it myself w/ alternative medicine!! The best natural medicine to fight aspergillus in my research was found in my backyard! It can't hurt her- Egyptians have used it...google it!! I am thinking about bottling more up! I give it to her in her gtube to she doesn't even know <img src="i/expressions/face-icon-small-smile.gif" border="0">

Blythe
Mom2Brinly
7yo w/CF
10yo w/out CF
5yo w/out CF