Culturing MAC

H

hmw

New member
<div class="FTQUOTE"><begin quote>I have not been doing any other treatments then breathing.. as I was undiagnosed with CF last November.. oddly enough since then, my health took a really nose dive starting with me being intubated and not being able to recover, my PFTS, oxygen level and stamina continued to decline</end quote>
<br>I don't find it odd at all. I'm sorry it happened, though. <img src="i/expressions/face-icon-small-sad.gif" border="0"><br><br>I really, really hope that treating the MAC helps. Emily was tested for it when she had her recent bronch. due to unexplained decline over the last year but it's not something they routinely look for.<br><br>I believe they often have to use combination of different types of meds to treat it (IV and/or oral and/or inhaled) depending on what exactly is there~ hoping you find out specifics soon and something that works for you.<br>
 
H

hmw

New member
<div class="FTQUOTE"><begin quote>I have not been doing any other treatments then breathing.. as I was undiagnosed with CF last November.. oddly enough since then, my health took a really nose dive starting with me being intubated and not being able to recover, my PFTS, oxygen level and stamina continued to decline</end quote>
<br>I don't find it odd at all. I'm sorry it happened, though. <img src="i/expressions/face-icon-small-sad.gif" border="0"><br><br>I really, really hope that treating the MAC helps. Emily was tested for it when she had her recent bronch. due to unexplained decline over the last year but it's not something they routinely look for.<br><br>I believe they often have to use combination of different types of meds to treat it (IV and/or oral and/or inhaled) depending on what exactly is there~ hoping you find out specifics soon and something that works for you.<br>
 
T

TonyaH

Guest
<P>Hey Jennifer,</P>
<P>Yuck!  I am sorry you are dealing with all of this.</P>
<P> </P>
<P>Andrew does not culture MAC, but he does have mycobacterium abcessus.  We are on our second round of iv and oral abx treatments.  NTMs are just really hard to eradicate.</P>
<P> </P>
<P>I have done alot of reading on NTMs and it sounds like treatment varies from clinic to clinic, and also depending on the severity of the infection.  Andrew's doctors have been very agressive with his myco.  </P>
<P> </P>
<P>I'm not sure where you live, but along with National Jewish in Denver, NIH in Bethesda is also very big into NTM research and treatment.  They are both known nationally for their expertise in this area.  If you are closer to the east coast, that might be an option for you.  </P>
<P> </P>
<P>Andrew's current cocktail of iv meropenum, nebbed amikacin, and oral zyvox and azithromycin was recommended by NIH.  Our docs at UNC consulted with them in June and that is what we have been using ever since. He is scheduled to stop ivs on Aug. 23rd.  As for the other three abx, I guess we'll see if we are continuing them or not.  Last time we stopped treatment after 6 weeks.  This time, I think I want to ask to continue some kind of treatment for a year or so.  In my opinion, it's easy to take a pill once a day and if that will ensure clean cultures, it's worth it.</P>
<P> </P>
<P>Good luck Jennifer.  I hope treating the MAC starts you down the path to better health!</P>
 
T

TonyaH

Guest
<P>Hey Jennifer,</P>
<P>Yuck! I am sorry you are dealing with all of this.</P>
<P></P>
<P>Andrew does not culture MAC, but he does have mycobacterium abcessus. We are on our second round of iv and oral abx treatments. NTMs are just really hard to eradicate.</P>
<P></P>
<P>I have done alot of reading on NTMs and it sounds like treatment varies from clinic to clinic, and also depending on the severity of the infection. Andrew's doctors have been very agressive with his myco. </P>
<P></P>
<P>I'm not sure where you live, but along with National Jewish in Denver, NIH in Bethesda is also very big into NTM research and treatment. They are both known nationally for their expertise in this area. If you are closer to the east coast, that might be an option for you. </P>
<P></P>
<P>Andrew's current cocktail of iv meropenum, nebbed amikacin, and oral zyvox and azithromycin was recommended by NIH. Our docs at UNC consulted with them in June and that is what we have been using ever since.He is scheduled to stop ivs on Aug. 23rd. As for the other three abx, I guess we'll see if we are continuing them or not. Last time we stopped treatment after 6 weeks. This time, I think I want to ask to continue some kind of treatment for a year or so. In my opinion, it's easy to take a pill once a day and if that will ensure clean cultures, it's worth it.</P>
<P></P>
<P>Good luck Jennifer. I hope treating the MAC starts you down the path to better health!</P>
 
T

TonyaH

Guest
<P><BR>Hey Jennifer,</P>
<P>Yuck! I am sorry you are dealing with all of this.</P>
<P></P>
<P>Andrew does not culture MAC, but he does have mycobacterium abcessus. We are on our second round of iv and oral abx treatments. NTMs are just really hard to eradicate.</P>
<P></P>
<P>I have done alot of reading on NTMs and it sounds like treatment varies from clinic to clinic, and also depending on the severity of the infection. Andrew's doctors have been very agressive with his myco. </P>
<P></P>
<P>I'm not sure where you live, but along with National Jewish in Denver, NIH in Bethesda is also very big into NTM research and treatment. They are both known nationally for their expertise in this area. If you are closer to the east coast, that might be an option for you. </P>
<P></P>
<P>Andrew's current cocktail of iv meropenum, nebbed amikacin, and oral zyvox and azithromycin was recommended by NIH. Our docs at UNC consulted with them in June and that is what we have been using ever since.He is scheduled to stop ivs on Aug. 23rd. As for the other three abx, I guess we'll see if we are continuing them or not. Last time we stopped treatment after 6 weeks. This time, I think I want to ask to continue some kind of treatment for a year or so. In my opinion, it's easy to take a pill once a day and if that will ensure clean cultures, it's worth it.</P>
<P></P>
<P>Good luck Jennifer. I hope treating the MAC starts you down the path to better health!</P>
 
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