This is the first time I have posted something. I have been "lurking" in the background still trying to get my arms around my diagnosis in April of CF. <div><br></div><div>I am 55 with lifelong lung problems and have been misdiagnosed until recently discovered DF508 and Arg347 genes. I am now under the care of the CF Care Center and had recommended me to NY Presbyterian for lung transplant and I was rejected because I culture B Cepacia (actually, B Vietnamiensis to be exact). </div><div><br></div><div>So I did some research online and found information about a company in Michigan, NanoBio, who discovered a nanoemulsion solution, NB-401, which may be able to destroy drug-resistent bacteria such as B Cepacia. I have not been able to find any reference on the CF Foundation website or any other CF website as to whether this has been trial-tested. </div><div><br></div><div>My first thought was to ask this wonderful group of knowledgeable people if anyone has this same bacteria, have heard of this medication or has any other information to share. </div><div><br><div>I am truly grateful for all the information I have gleaned from these forums as they have given me hope and inspiration.</div><div><br></div><div>Karen</div><div>55, diagnosed with CF 04-15-11</div></div>
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B cepacia - nanoemulsion solution
- Thread starter vivsmom
- Start date
This is the first time I have posted something. I have been "lurking" in the background still trying to get my arms around my diagnosis in April of CF. <br>I am 55 with lifelong lung problems and have been misdiagnosed until recently discovered DF508 and Arg347 genes. I am now under the care of the CF Care Center and had recommended me to NY Presbyterian for lung transplant and I was rejected because I culture B Cepacia (actually, B Vietnamiensis to be exact). <br>So I did some research online and found information about a company in Michigan, NanoBio, who discovered a nanoemulsion solution, NB-401, which may be able to destroy drug-resistent bacteria such as B Cepacia. I have not been able to find any reference on the CF Foundation website or any other CF website as to whether this has been trial-tested. <br>My first thought was to ask this wonderful group of knowledgeable people if anyone has this same bacteria, have heard of this medication or has any other information to share. <br>I am truly grateful for all the information I have gleaned from these forums as they have given me hope and inspiration.<br>Karen55, diagnosed with CF 04-15-11
This is the first time I have posted something. I have been "lurking" in the background still trying to get my arms around my diagnosis in April of CF. <br>I am 55 with lifelong lung problems and have been misdiagnosed until recently discovered DF508 and Arg347 genes. I am now under the care of the CF Care Center and had recommended me to NY Presbyterian for lung transplant and I was rejected because I culture B Cepacia (actually, B Vietnamiensis to be exact). <br>So I did some research online and found information about a company in Michigan, NanoBio, who discovered a nanoemulsion solution, NB-401, which may be able to destroy drug-resistent bacteria such as B Cepacia. I have not been able to find any reference on the CF Foundation website or any other CF website as to whether this has been trial-tested. <br>My first thought was to ask this wonderful group of knowledgeable people if anyone has this same bacteria, have heard of this medication or has any other information to share. <br>I am truly grateful for all the information I have gleaned from these forums as they have given me hope and inspiration.<br>Karen55, diagnosed with CF 04-15-11
I haven't heard of it, but based on the name NB-401, I would bet it's still an investigational drug. If that's the case, you could try and find out which centers are involved in the study and see if you qualify. Otherwise, I don't know what to tell you. I wish you the best of luck.
I haven't heard of it, but based on the name NB-401, I would bet it's still an investigational drug. If that's the case, you could try and find out which centers are involved in the study and see if you qualify. Otherwise, I don't know what to tell you. I wish you the best of luck.
I haven't heard of it, but based on the name NB-401, I would bet it's still an investigational drug. If that's the case, you could try and find out which centers are involved in the study and see if you qualify. Otherwise, I don't know what to tell you. I wish you the best of luck.
If you're still interested in a lung transplant you can contact UPMC (University of Pittsburgh Medical Center) I am CF/Cepcacia and they transplanted me 4 years ago. I have referred other Cepacia patients to them and they have also received lung transplants. <br><br>I hope you're right about a new drug to get rid of Cepacia. I still culture it post transplant and would love to get rid of it <img src="i/expressions/face-icon-small-smile.gif" border="0"> Despite culturing it, it hasn't seemed to affect my new lungs much. <br><br>~best of luck~<br>
If you're still interested in a lung transplant you can contact UPMC (University of Pittsburgh Medical Center) I am CF/Cepcacia and they transplanted me 4 years ago. I have referred other Cepacia patients to them and they have also received lung transplants. <br><br>I hope you're right about a new drug to get rid of Cepacia. I still culture it post transplant and would love to get rid of it <img src="i/expressions/face-icon-small-smile.gif" border="0"> Despite culturing it, it hasn't seemed to affect my new lungs much. <br><br>~best of luck~<br>
If you're still interested in a lung transplant you can contact UPMC (University of Pittsburgh Medical Center) I am CF/Cepcacia and they transplanted me 4 years ago. I have referred other Cepacia patients to them and they have also received lung transplants. <br><br>I hope you're right about a new drug to get rid of Cepacia. I still culture it post transplant and would love to get rid of it <img src="i/expressions/face-icon-small-smile.gif" border="0"> Despite culturing it, it hasn't seemed to affect my new lungs much. <br><br>~best of luck~<br>
L
lizlas
Guest
<P>Hi</P>
<P>I too am veryinterested in the NANOEMULSION. well acording to a study I have from University of Michigan. Dr. John LiPima says that within 5 years it should be aavailable to CF patients for inhalation. and that was dated Feb 2009.....</P>
<P>I called there last year to the U of Michigan and it was extremly difficult to get to the right people and get the facts on the nanoemulsion. I did fianlly get a reply that still under research. It is a research collaboration between DR.LiPuma and Dr. James R. Baker Jr.....the emulsion is made up of soybean oil , water, alcholo and surfactants......it s supposed to work for most bacteria not just cepacia.....sounds fabulous to get these dam bacteria knocked out or suppressed.!!!!</P>
<P></P>
<P>I dont know if they have moved on to trials, but think I will try again next week. My dr. also contacts Dr. LiPuma from time to time, I bug her and she bugs him....</P>
<P></P>
<P>If I hear anymore I will post and please do the same....</P>
<P></P>
<P>Thanks Liz</P>
<P>I too am veryinterested in the NANOEMULSION. well acording to a study I have from University of Michigan. Dr. John LiPima says that within 5 years it should be aavailable to CF patients for inhalation. and that was dated Feb 2009.....</P>
<P>I called there last year to the U of Michigan and it was extremly difficult to get to the right people and get the facts on the nanoemulsion. I did fianlly get a reply that still under research. It is a research collaboration between DR.LiPuma and Dr. James R. Baker Jr.....the emulsion is made up of soybean oil , water, alcholo and surfactants......it s supposed to work for most bacteria not just cepacia.....sounds fabulous to get these dam bacteria knocked out or suppressed.!!!!</P>
<P></P>
<P>I dont know if they have moved on to trials, but think I will try again next week. My dr. also contacts Dr. LiPuma from time to time, I bug her and she bugs him....</P>
<P></P>
<P>If I hear anymore I will post and please do the same....</P>
<P></P>
<P>Thanks Liz</P>
L
lizlas
Guest
<P>Hi</P>
<P>I too am veryinterested in the NANOEMULSION. well acording to a study I have from University of Michigan. Dr. John LiPima says that within 5 years it should be aavailable to CF patients for inhalation. and that was dated Feb 2009.....</P>
<P>I called there last year to the U of Michigan and it was extremly difficult to get to the right people and get the facts on the nanoemulsion. I did fianlly get a reply that still under research. It is a research collaboration between DR.LiPuma and Dr. James R. Baker Jr.....the emulsion is made up of soybean oil , water, alcholo and surfactants......it s supposed to work for most bacteria not just cepacia.....sounds fabulous to get these dam bacteria knocked out or suppressed.!!!!</P>
<P></P>
<P>I dont know if they have moved on to trials, but think I will try again next week. My dr. also contacts Dr. LiPuma from time to time, I bug her and she bugs him....</P>
<P></P>
<P>If I hear anymore I will post and please do the same....</P>
<P></P>
<P>Thanks Liz</P>
<P>I too am veryinterested in the NANOEMULSION. well acording to a study I have from University of Michigan. Dr. John LiPima says that within 5 years it should be aavailable to CF patients for inhalation. and that was dated Feb 2009.....</P>
<P>I called there last year to the U of Michigan and it was extremly difficult to get to the right people and get the facts on the nanoemulsion. I did fianlly get a reply that still under research. It is a research collaboration between DR.LiPuma and Dr. James R. Baker Jr.....the emulsion is made up of soybean oil , water, alcholo and surfactants......it s supposed to work for most bacteria not just cepacia.....sounds fabulous to get these dam bacteria knocked out or suppressed.!!!!</P>
<P></P>
<P>I dont know if they have moved on to trials, but think I will try again next week. My dr. also contacts Dr. LiPuma from time to time, I bug her and she bugs him....</P>
<P></P>
<P>If I hear anymore I will post and please do the same....</P>
<P></P>
<P>Thanks Liz</P>
L
lizlas
Guest
<P>Hi</P>
<P>I too am veryinterested in the NANOEMULSION. well acording to a study I have from University of Michigan. Dr. John LiPima says that within 5 years it should be aavailable to CF patients for inhalation. and that was dated Feb 2009.....</P>
<P>I called there last year to the U of Michigan and it was extremly difficult to get to the right people and get the facts on the nanoemulsion. I did fianlly get a reply that still under research. It is a research collaboration between DR.LiPuma and Dr. James R. Baker Jr.....the emulsion is made up of soybean oil , water, alcholo and surfactants......it s supposed to work for most bacteria not just cepacia.....sounds fabulous to get these dam bacteria knocked out or suppressed.!!!!</P>
<P></P>
<P>I dont know if they have moved on to trials, but think I will try again next week. My dr. also contacts Dr. LiPuma from time to time, I bug her and she bugs him....</P>
<P></P>
<P>If I hear anymore I will post and please do the same....</P>
<P></P>
<P>Thanks Liz</P>
<P>I too am veryinterested in the NANOEMULSION. well acording to a study I have from University of Michigan. Dr. John LiPima says that within 5 years it should be aavailable to CF patients for inhalation. and that was dated Feb 2009.....</P>
<P>I called there last year to the U of Michigan and it was extremly difficult to get to the right people and get the facts on the nanoemulsion. I did fianlly get a reply that still under research. It is a research collaboration between DR.LiPuma and Dr. James R. Baker Jr.....the emulsion is made up of soybean oil , water, alcholo and surfactants......it s supposed to work for most bacteria not just cepacia.....sounds fabulous to get these dam bacteria knocked out or suppressed.!!!!</P>
<P></P>
<P>I dont know if they have moved on to trials, but think I will try again next week. My dr. also contacts Dr. LiPuma from time to time, I bug her and she bugs him....</P>
<P></P>
<P>If I hear anymore I will post and please do the same....</P>
<P></P>
<P>Thanks Liz</P>
L
lizlas
Guest
<P>DUPLICATE</P>
L
lizlas
Guest
<P>DUPLICATE</P>
L
lizlas
Guest
<P>DUPLICATE</P>