Culturing MAC

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maryiris

New member
I am currently 51 years old. My entire life I was treated for severe asthma. Dr. Clinton Sharp in Louisiana just threw one antibiotic after another at me for years - to no avail. I moved to the Washington DC area and ended up seeing a pulmonologist, Dr. Byron Cooper. Dr. Cooper realized right away something else was wrong and he spent a lot of time and testing to find it. Eventually we did an invasive lung biopsy and found MAC. Coop put me on antibiotics (a HANDFUL EVERY DAY) for 18 months. It hasn't shown up again. After I continued to have problems. Sweat Test was borderline. Genetic testing showed one CF gene. Coop kept digging and reading up - finally sent me to see a CF specialist who sent the blood to a special lab in California that tests for over 1000 strains. They found the other CF mutation. I have been treated for CF since then. I was officially diagnosed with CF at age 40.
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<br />The antibiotics for the MAC didn't cause alot of problems - wasn't so bad at all.
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<br />Basically Dr. Byron Cooper (my hero who just kept digging and digging) and Dr. Peter Levit (my CF god) have saved my life. I now enjoy my 16 month old grandson and plan to be around to spoil him for quite some time <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

mamerth

New member
Jennifer, I am a patient at National Jewish. They are treating me for CF and NTM (Non-tuberculous mycobacteria) Like others have said National Jewish is the place to go if you have MAC. Can your doctors consult with National Jewish until you can be seen at National Jewish?? Just a thought.

Like Deb said above... see if they would be willing to have the National Jewish lab do more studies on your sputum.

National Jewish is very aggressive with stuff like this... if it seems necessary. My "bugs" are not deemed necessary for them to be aggressive but they told me when the time comes they will be. I believe them!!!
 
M

mamerth

New member
Jennifer, I am a patient at National Jewish. They are treating me for CF and NTM (Non-tuberculous mycobacteria) Like others have said National Jewish is the place to go if you have MAC. Can your doctors consult with National Jewish until you can be seen at National Jewish?? Just a thought.

Like Deb said above... see if they would be willing to have the National Jewish lab do more studies on your sputum.

National Jewish is very aggressive with stuff like this... if it seems necessary. My "bugs" are not deemed necessary for them to be aggressive but they told me when the time comes they will be. I believe them!!!
 
M

mamerth

New member
Jennifer, I am a patient at National Jewish. They are treating me for CF and NTM (Non-tuberculous mycobacteria) Like others have said National Jewish is the place to go if you have MAC. Can your doctors consult with National Jewish until you can be seen at National Jewish?? Just a thought.
<br />
<br />Like Deb said above... see if they would be willing to have the National Jewish lab do more studies on your sputum.
<br />
<br />National Jewish is very aggressive with stuff like this... if it seems necessary. My "bugs" are not deemed necessary for them to be aggressive but they told me when the time comes they will be. I believe them!!!
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L

Ldude916

New member
I had MAC back in 2004-2006. They found the MAC b/c my lung function just kept decreasing with no explanation, even though I was doing all of my treatments and I overall just felt like crap and my hair was falling out! It was treated with 18 months of oral drugs called Rifampin and Ethambutol. My urine was red for a long time! It is pretty toxic on the liver and I also started to get fuzzy eye-sight at about the 18 month mark. (MAC needs to be treated for 18-24 months they said.) My eyesight is back to normal after I stopped the drugs and MAC hasn't been cultured since.
 
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Ldude916

New member
I had MAC back in 2004-2006. They found the MAC b/c my lung function just kept decreasing with no explanation, even though I was doing all of my treatments and I overall just felt like crap and my hair was falling out! It was treated with 18 months of oral drugs called Rifampin and Ethambutol. My urine was red for a long time! It is pretty toxic on the liver and I also started to get fuzzy eye-sight at about the 18 month mark. (MAC needs to be treated for 18-24 months they said.) My eyesight is back to normal after I stopped the drugs and MAC hasn't been cultured since.
 
L

Ldude916

New member
I had MAC back in 2004-2006. They found the MAC b/c my lung function just kept decreasing with no explanation, even though I was doing all of my treatments and I overall just felt like crap and my hair was falling out! It was treated with 18 months of oral drugs called Rifampin and Ethambutol. My urine was red for a long time! It is pretty toxic on the liver and I also started to get fuzzy eye-sight at about the 18 month mark. (MAC needs to be treated for 18-24 months they said.) My eyesight is back to normal after I stopped the drugs and MAC hasn't been cultured since.
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JennifersHope

New member
Thank you for sharing your experience, I was under the impression I was going to have to do IV antibiotics, I am not sure why I thought that.. orals are much more doable for me then IV's.... I am hoping that is the route they will take with me but I am not sure, I was already on zithromax daily and on and off cipro a million times.

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 and I was desperate for someone to help me, I was bounced back and fourth between pulmonary and ENT, and finally I saw a local doctor because traveling so far was wearing me out.. That is when they did further testing to find the oxygen sats still low and the three cultures of MAC...

I do not have a diagnoses of any sort right now, just increased bronchestasis, MAC and hypoxia.

I am doing airway clearance because I was told that will help. It is a really good thing I did not get rid of my vest. my doctor told me I would not need it anymore, I can not imagine what hell I would have to go through getting medicaid that won't pay for xopenex or reflux meds for me to pay for a vest...
 
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JennifersHope

New member
Thank you for sharing your experience, I was under the impression I was going to have to do IV antibiotics, I am not sure why I thought that.. orals are much more doable for me then IV's.... I am hoping that is the route they will take with me but I am not sure, I was already on zithromax daily and on and off cipro a million times.

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 and I was desperate for someone to help me, I was bounced back and fourth between pulmonary and ENT, and finally I saw a local doctor because traveling so far was wearing me out.. That is when they did further testing to find the oxygen sats still low and the three cultures of MAC...

I do not have a diagnoses of any sort right now, just increased bronchestasis, MAC and hypoxia.

I am doing airway clearance because I was told that will help. It is a really good thing I did not get rid of my vest. my doctor told me I would not need it anymore, I can not imagine what hell I would have to go through getting medicaid that won't pay for xopenex or reflux meds for me to pay for a vest...
 
J

JennifersHope

New member
Thank you for sharing your experience, I was under the impression I was going to have to do IV antibiotics, I am not sure why I thought that.. orals are much more doable for me then IV's.... I am hoping that is the route they will take with me but I am not sure, I was already on zithromax daily and on and off cipro a million times.
<br />
<br />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 and I was desperate for someone to help me, I was bounced back and fourth between pulmonary and ENT, and finally I saw a local doctor because traveling so far was wearing me out.. That is when they did further testing to find the oxygen sats still low and the three cultures of MAC...
<br />
<br />I do not have a diagnoses of any sort right now, just increased bronchestasis, MAC and hypoxia.
<br />
<br />I am doing airway clearance because I was told that will help. It is a really good thing I did not get rid of my vest. my doctor told me I would not need it anymore, I can not imagine what hell I would have to go through getting medicaid that won't pay for xopenex or reflux meds for me to pay for a vest...
<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></div>
<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>
 
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