Hi Guys-
I have been doing a lot of research lately and I have written Dr. Richard Moss (Stanford) about testing Gamma Interferon in those with Cepacia. Of course, they would start off by testing mice and cells, but we need them to pick back up this research.
Moss did a study with inhaled gamma interferon several years ago to treat inflammation and prevent to acquisition of pseudo. The study yielded poor results and gamma interferon was dropped from the radar. The problem with the study was two fold. It did not test for intracellular bacteria pre and post drug inhalation and they were just trying to prevent pseudo which is not an intracellular bug...so theoretically, it wouldn't help anyway bc gamma interferon is most effective against intracellular pathogens.
Gamma Interferon is a chemical our bodies naturally produce essential in fighting intracellular bacteria. It is an approved treatment for granulomatous disease.... The two pathogens this disease struggles with are Cepacia and Aspergillus. GD also has issues with neutrophils working properly (just like us). In CF, people with low gamma interferon experience serious infections with mycobacterium (intracellular pathogen) and cepacia (intracellular pathogen) and even aspergillus.
In other illnesses with these infections that are not responding to traditional treatments, the addition of gamma interferon often results in a microbiological cure. In CF, the addition of gamma to those with severe mycobacterial disease often halts the progression of the disease. It has not been studied in CF with CEPACIA. My doctor recently told me that sadly research with gamma is dead in CF. THAT IS UNACCEPTABLE. This is a very powerful drug and its use in a clinical setting (at least research) is warranted.
Cepacia patients don't get the help they need. Let's see if we can't make some noise and ask them to test it at least in the lab with cepacia and CF.
I have already written Dr. Moss, but I was wondering if you all would sign your name to this email and I will send it on to him. Or you can just email him directly and ask him to re-open the investigations. We can do this and those with Cepacia need our help. It is not like it is not used to treat Cepacia. It is used EVERYDAY BY GD patients to treat life threatening CEPACIA disease.... Let's not just focus on the antibiotics....let's treat the terrain!!
Please if you feel comfortable you can sign this (although that might be scary putting your full name on the internet) Anyone have any better ideas?
The CF conference is in a few months...let's see if we can't get them interested in it by then.
Thanks so much
Mandy E. 35/CF/CFRD no Cepacia, but I have m.abscessus
I have been doing a lot of research lately and I have written Dr. Richard Moss (Stanford) about testing Gamma Interferon in those with Cepacia. Of course, they would start off by testing mice and cells, but we need them to pick back up this research.
Moss did a study with inhaled gamma interferon several years ago to treat inflammation and prevent to acquisition of pseudo. The study yielded poor results and gamma interferon was dropped from the radar. The problem with the study was two fold. It did not test for intracellular bacteria pre and post drug inhalation and they were just trying to prevent pseudo which is not an intracellular bug...so theoretically, it wouldn't help anyway bc gamma interferon is most effective against intracellular pathogens.
Gamma Interferon is a chemical our bodies naturally produce essential in fighting intracellular bacteria. It is an approved treatment for granulomatous disease.... The two pathogens this disease struggles with are Cepacia and Aspergillus. GD also has issues with neutrophils working properly (just like us). In CF, people with low gamma interferon experience serious infections with mycobacterium (intracellular pathogen) and cepacia (intracellular pathogen) and even aspergillus.
In other illnesses with these infections that are not responding to traditional treatments, the addition of gamma interferon often results in a microbiological cure. In CF, the addition of gamma to those with severe mycobacterial disease often halts the progression of the disease. It has not been studied in CF with CEPACIA. My doctor recently told me that sadly research with gamma is dead in CF. THAT IS UNACCEPTABLE. This is a very powerful drug and its use in a clinical setting (at least research) is warranted.
Cepacia patients don't get the help they need. Let's see if we can't make some noise and ask them to test it at least in the lab with cepacia and CF.
I have already written Dr. Moss, but I was wondering if you all would sign your name to this email and I will send it on to him. Or you can just email him directly and ask him to re-open the investigations. We can do this and those with Cepacia need our help. It is not like it is not used to treat Cepacia. It is used EVERYDAY BY GD patients to treat life threatening CEPACIA disease.... Let's not just focus on the antibiotics....let's treat the terrain!!
Please if you feel comfortable you can sign this (although that might be scary putting your full name on the internet) Anyone have any better ideas?
The CF conference is in a few months...let's see if we can't get them interested in it by then.
Thanks so much
Mandy E. 35/CF/CFRD no Cepacia, but I have m.abscessus