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B cepacia - nanoemulsion solution

vivsmom

New member
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 style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br></div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">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 style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br></div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">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 style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br></div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">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 style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">I am truly grateful for all the information I have gleaned from these forums as they have given me hope and inspiration.</div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br></div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">Karen</div><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">55, diagnosed with CF 04-15-11</div></div>
 

vivsmom

New member
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 style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">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 style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">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 style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">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 style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">I am truly grateful for all the information I have gleaned from these forums as they have given me hope and inspiration.<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">Karen<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">55, diagnosed with CF 04-15-11
 

vivsmom

New member
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 style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">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 style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">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 style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">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 style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">I am truly grateful for all the information I have gleaned from these forums as they have given me hope and inspiration.<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; "><br><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">Karen<div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; ">55, diagnosed with CF 04-15-11
 

mamaScarlett

Active member
I don't know what happened to that study but I do remember reading about it. It was from 2-3 yrs ago though so I hope it didn't just get lost in the shuffle. <br>I'd write to the university or those specific doctors and see what comes of it. You never know.<br>I don't know much about your form of B. Viet...is it actually the same as B. Cep? Doesn't sound like it to me.<br>Though you were rejected for transplant bc of your culture, please remember that is not neccesarily what will ultimately harm your lungs. Many cfers culture many different "bad" things, but each one affects each patient in a different way.<br>I have the bad b. cep bug but it barely affects me. I get more trouble from staph and pseudo occasionally.<br>I would really focus on the whole picture here-your nutrition, and your chest pt. Some bad bugs can actually keep other ones at bay. Not saying that that always is the case of course, but please keep in mind that for all of us, its airway clearance that makes up the most success.<br>
 

mamaScarlett

Active member
I don't know what happened to that study but I do remember reading about it. It was from 2-3 yrs ago though so I hope it didn't just get lost in the shuffle. <br>I'd write to the university or those specific doctors and see what comes of it. You never know.<br>I don't know much about your form of B. Viet...is it actually the same as B. Cep? Doesn't sound like it to me.<br>Though you were rejected for transplant bc of your culture, please remember that is not neccesarily what will ultimately harm your lungs. Many cfers culture many different "bad" things, but each one affects each patient in a different way.<br>I have the bad b. cep bug but it barely affects me. I get more trouble from staph and pseudo occasionally.<br>I would really focus on the whole picture here-your nutrition, and your chest pt. Some bad bugs can actually keep other ones at bay. Not saying that that always is the case of course, but please keep in mind that for all of us, its airway clearance that makes up the most success.<br>
 

mamaScarlett

Active member
I don't know what happened to that study but I do remember reading about it. It was from 2-3 yrs ago though so I hope it didn't just get lost in the shuffle. <br>I'd write to the university or those specific doctors and see what comes of it. You never know.<br>I don't know much about your form of B. Viet...is it actually the same as B. Cep? Doesn't sound like it to me.<br>Though you were rejected for transplant bc of your culture, please remember that is not neccesarily what will ultimately harm your lungs. Many cfers culture many different "bad" things, but each one affects each patient in a different way.<br>I have the bad b. cep bug but it barely affects me. I get more trouble from staph and pseudo occasionally.<br>I would really focus on the whole picture here-your nutrition, and your chest pt. Some bad bugs can actually keep other ones at bay. Not saying that that always is the case of course, but please keep in mind that for all of us, its airway clearance that makes up the most success.<br>
 

vivsmom

New member
I didn't know about these bacterias until I cultured this and my doctor wasn't familiar with this name either. So, I searched on the internet and this is what I found on www.cfmedicine.com - the article is dated 2008
"The bacteriae previously known as 'Burkholderia cepacia' have been reclassified as nine closely related species, sometimes referred to as 'genomovars'"
This chart was under this statement:
Genomovar
Species
I
Burkholderia cepacia
II
Burkholderia multivorans
III
Burkholderia cenocepacia
IV
Burkholderia stabilis
V
Burkholderia vietnamiensis
VI
Burkholderia dolosa
VII
Burkholderia ambifaria
VIII
Burkholderia anthina
IX
Burkholderia pyrrocinia
I did send an email to the company, NanoBio, and asked whether there was any progress with this drug. I am also going to ask my doctor on my next visit for him to follow up as well. Will keep you posted. It sounded promising, if not for my situation but for a lot of people.
 

vivsmom

New member
I didn't know about these bacterias until I cultured this and my doctor wasn't familiar with this name either. So, I searched on the internet and this is what I found on www.cfmedicine.com - the article is dated 2008
"The bacteriae previously known as 'Burkholderia cepacia' have been reclassified as nine closely related species, sometimes referred to as 'genomovars'"
This chart was under this statement:
Genomovar
Species
I
Burkholderia cepacia
II
Burkholderia multivorans
III
Burkholderia cenocepacia
IV
Burkholderia stabilis
V
Burkholderia vietnamiensis
VI
Burkholderia dolosa
VII
Burkholderia ambifaria
VIII
Burkholderia anthina
IX
Burkholderia pyrrocinia
I did send an email to the company, NanoBio, and asked whether there was any progress with this drug. I am also going to ask my doctor on my next visit for him to follow up as well. Will keep you posted. It sounded promising, if not for my situation but for a lot of people.
 

vivsmom

New member
I didn't know about these bacterias until I cultured this and my doctor wasn't familiar with this name either. So, I searched on the internet and this is what I found on www.cfmedicine.com - the article is dated 2008
<br />"The bacteriae previously known as 'Burkholderia cepacia' have been reclassified as nine closely related species, sometimes referred to as 'genomovars'"
<br />This chart was under this statement:
<br />Genomovar
<br />Species
<br />I
<br />Burkholderia cepacia
<br />II
<br />Burkholderia multivorans
<br />III
<br />Burkholderia cenocepacia
<br />IV
<br />Burkholderia stabilis
<br />V
<br />Burkholderia vietnamiensis
<br />VI
<br />Burkholderia dolosa
<br />VII
<br />Burkholderia ambifaria
<br />VIII
<br />Burkholderia anthina
<br />IX
<br />Burkholderia pyrrocinia
<br />I did send an email to the company, NanoBio, and asked whether there was any progress with this drug. I am also going to ask my doctor on my next visit for him to follow up as well. Will keep you posted. It sounded promising, if not for my situation but for a lot of people.
 

JustDucky

New member
I haven't heard of it, but will look it up now that you mention it. I too culture cepacia, genomavars II and IV I think. You should know that there are some centers who will transplant cepacia patients especially if it isn't the type II or III. I don't know of the names of those centers off the top of my head, but maybe someone on this group will chime in.
Keep us posted, I would love to kick this bug out of me <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jenn 39 w/CF
 

JustDucky

New member
I haven't heard of it, but will look it up now that you mention it. I too culture cepacia, genomavars II and IV I think. You should know that there are some centers who will transplant cepacia patients especially if it isn't the type II or III. I don't know of the names of those centers off the top of my head, but maybe someone on this group will chime in.
Keep us posted, I would love to kick this bug out of me <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jenn 39 w/CF
 

JustDucky

New member
I haven't heard of it, but will look it up now that you mention it. I too culture cepacia, genomavars II and IV I think. You should know that there are some centers who will transplant cepacia patients especially if it isn't the type II or III. I don't know of the names of those centers off the top of my head, but maybe someone on this group will chime in.
<br />Keep us posted, I would love to kick this bug out of me <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />Jenn 39 w/CF
 

markinohio

New member
I know several people with cepacia that have transplanted at UPMC in Pittsburgh. I have cenocepacia and have been accepted in the UPMC transplant program. I am not sick enough to be listed yet, but have been evaluated. My doctor's told me that cenocepacia was one of the worst one's to have. I don't know if the other variations of cepacia are better or worse. Good luck.
 

markinohio

New member
I know several people with cepacia that have transplanted at UPMC in Pittsburgh. I have cenocepacia and have been accepted in the UPMC transplant program. I am not sick enough to be listed yet, but have been evaluated. My doctor's told me that cenocepacia was one of the worst one's to have. I don't know if the other variations of cepacia are better or worse. Good luck.
 

markinohio

New member
I know several people with cepacia that have transplanted at UPMC in Pittsburgh. I have cenocepacia and have been accepted in the UPMC transplant program. I am not sick enough to be listed yet, but have been evaluated. My doctor's told me that cenocepacia was one of the worst one's to have. I don't know if the other variations of cepacia are better or worse. Good luck.
 

kiwilady

Member
Hi Karen,

I was diagnosed with genomovar 1 in 1998, more recently I have managed to pick up a second strain, cenocepacia. I too recall reading somewhere, Scientists had recently discovered they may be able to destroy drug-resistant bacteria, like B.Cepacia, with a solution called nanoemulsion. At the time of reading the article, I believe it was still in research stage. It would be good to learn of any progress.....

I thought my health would suddenly decline with the more recent diagnosis, however my lung-function has pretty much behaved!
Yes, I agree with you too, these forums can give you lots of hope and inspiration.

Cheers
Eileen.
 

kiwilady

Member
Hi Karen,

I was diagnosed with genomovar 1 in 1998, more recently I have managed to pick up a second strain, cenocepacia. I too recall reading somewhere, Scientists had recently discovered they may be able to destroy drug-resistant bacteria, like B.Cepacia, with a solution called nanoemulsion. At the time of reading the article, I believe it was still in research stage. It would be good to learn of any progress.....

I thought my health would suddenly decline with the more recent diagnosis, however my lung-function has pretty much behaved!
Yes, I agree with you too, these forums can give you lots of hope and inspiration.

Cheers
Eileen.
 

kiwilady

Member
Hi Karen,
<br />
<br />I was diagnosed with genomovar 1 in 1998, more recently I have managed to pick up a second strain, cenocepacia. I too recall reading somewhere, Scientists had recently discovered they may be able to destroy drug-resistant bacteria, like B.Cepacia, with a solution called nanoemulsion. At the time of reading the article, I believe it was still in research stage. It would be good to learn of any progress.....
<br />
<br />I thought my health would suddenly decline with the more recent diagnosis, however my lung-function has pretty much behaved!
<br />Yes, I agree with you too, these forums can give you lots of hope and inspiration.
<br />
<br />Cheers
<br />Eileen.
<br />
 
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