MAC and Pseudomonas

F

franzie2984

Member
Long story, read to end for actual point <img src="i/expressions/face-icon-small-wink.gif" border="0">. <br><br>One month ago I switched CF clinics. At my first visit to the new clinic I cultured Pseudomonas (PA). At that time I thought I had only cultured it once in 2006, and had never been treated for PA via Tobi/Cipro or anything like that. I have however been doing treatments for Mycobacterium (MAC) on and off since about 2008-2009 (long story). Two days ago I found out, by nagging my old clinic for records and scrutinizing everything, that I actually cultured PA there too in 2007 but they never informed me of this or treated me.... <br><br>Flash forward to yesterday, one month after culturing PA and beginning Tobi/Cipro... My lung function increased by more than 30% I had always been around 100%+ until roughly 2 years ago at the start of all this "MAC" crap. Prior to switching clinics I had NOT been nebulizing ANYTHING and my lung function steadily decreased for 2 years without my doctor doing anything. The reason I switched was because I finally wised up and decided that the clinic I was going to was just going to sit there and do nothing for me. I was 6 months into MAC treatment and NOT feeling any better..... At the first visit to my new clinic one month ago my FEV1 was the lowest it has ever been in my entire life at 72%... <span style="color: rgb(0, 0, 0);">YESTERDAY is was 108%! <br><br>I had always been wary of this "MAC" diagnosis and now I am even more unsure of whether treatment for it was the right decision. 6 months of treatment with no alleviation of symptoms and then one cycle of PA treatment and I feel great!!! The first time I did MAC medication for 6 months it also included a heavy dose of Cipro and I felt better, this time my medication does not include Cipro and wasn't feeling better at all. Cipro treats PA......<br><br>So I ask the new doctor about this yesterday and she said, "Yes first time cultures of MAC are typically treated for PA before we try to investigate the MAC further since the problem can be PA and MAC is so hard to eradicate and the medication is so hard for people to tolerate." <br><br>Finally, my point: Has anyone heard of this protocol to treat for PA upon culture of MAC? Has anyone cultured MAC but been treated for PA? Naturally I am fairly upset about this whole two year stint of feeling like ***** and having no one do anything productive for me. However, I am very curious about others experiences and also would like to inform people in case they culture MAC and want to be sure to ask these types of questions. <br><br><br>
 
F

franzie2984

Member
Long story, read to end for actual point <img src="i/expressions/face-icon-small-wink.gif" border="0">. <br><br>One month ago I switched CF clinics. At my first visit to the new clinic I cultured Pseudomonas (PA). At that time I thought I had only cultured it once in 2006, and had never been treated for PA via Tobi/Cipro or anything like that. I have however been doing treatments for Mycobacterium (MAC) on and off since about 2008-2009 (long story). Two days ago I found out, by nagging my old clinic for records and scrutinizing everything, that I actually cultured PA there too in 2007 but they never informed me of this or treated me.... <br><br>Flash forward to yesterday, one month after culturing PA and beginning Tobi/Cipro... My lung function increased by more than 30% I had always been around 100%+ until roughly 2 years ago at the start of all this "MAC" crap. Prior to switching clinics I had NOT been nebulizing ANYTHING and my lung function steadily decreased for 2 years without my doctor doing anything. The reason I switched was because I finally wised up and decided that the clinic I was going to was just going to sit there and do nothing for me. I was 6 months into MAC treatment and NOT feeling any better..... At the first visit to my new clinic one month ago my FEV1 was the lowest it has ever been in my entire life at 72%... <span style="color: rgb(0, 0, 0);">YESTERDAY is was 108%! <br><br>I had always been wary of this "MAC" diagnosis and now I am even more unsure of whether treatment for it was the right decision. 6 months of treatment with no alleviation of symptoms and then one cycle of PA treatment and I feel great!!! The first time I did MAC medication for 6 months it also included a heavy dose of Cipro and I felt better, this time my medication does not include Cipro and wasn't feeling better at all. Cipro treats PA......<br><br>So I ask the new doctor about this yesterday and she said, "Yes first time cultures of MAC are typically treated for PA before we try to investigate the MAC further since the problem can be PA and MAC is so hard to eradicate and the medication is so hard for people to tolerate." <br><br>Finally, my point: Has anyone heard of this protocol to treat for PA upon culture of MAC? Has anyone cultured MAC but been treated for PA? Naturally I am fairly upset about this whole two year stint of feeling like ***** and having no one do anything productive for me. However, I am very curious about others experiences and also would like to inform people in case they culture MAC and want to be sure to ask these types of questions. <br><br><br>
 
L

lizlas

Guest
<P>wow...amazing...Ive never heard of treating PA when you culture Mac...you must feel great to get all that function back. good thing you made the switch.</P>
<P>i d like to hear what other people have to say </P>
<P></P>
 
L

lizlas

Guest
<P>wow...amazing...Ive never heard of treating PA when you culture Mac...you must feel great to get all that function back. good thing you made the switch.</P>
<P>i d like to hear what other people have to say </P>
<P></P>
 
F

franzie2984

Member
Hi,<br>Yes I am too. Has anyone cultured MAC? Anyone been treated for PA or something else instead or not been treated for the MAC? Good outcomes? Bad outcomes? <br><br>
 
F

franzie2984

Member
Hi,<br>Yes I am too. Has anyone cultured MAC? Anyone been treated for PA or something else instead or not been treated for the MAC? Good outcomes? Bad outcomes? <br><br>
 
J

JennifersHope

New member
I actually have switched clinics as well. I thought I was getting very good care where I was going, I really, really trusted with my whole heart. I was actually undiagnosed with CF by them based on one nasal PD test t that was done in a clinical trial setting. I dont' want to say very much more about it right now but I have been reevlauated by top specilist and lets just leave it at many many things were left untreated because they became fixated on me not having CF.

I was getting sicker and sicker as well, I have a past medical history of culturing PA and MRSA but the entire time I was at my "other clinic" who I still really like as people just think they missed the bigger picture, they only did one sputum culture.

Anyway, I was not getting better.... for about a year, and I was told it was VCD which I without a doubt have a very severe case of, however, I switched to a different place and they did a sputum, they did a six minute walk that day and I was sating low, needed to go back on oxygen and cultures showed MAC six times now.

Because I had night sweats, pretty big changes in catscan, low grade fevers and felt like I had the flu, we decided to do treatment... I have been being treated since October for the MAC it took a very long time, months and months for the cultures to come back. It took about eight weeks before I noticed any change but the night sweats and fevers are gone. I am on IV Cipro, Zyvox and Amikacian, I am on oral Bactrim.

I was told the Zyvox will be the first IV they get rid of and they picked that one because they typically treat you past cultures as well, just in case it doesn't show up.

I have been sick as crap intubated on life support for 11 days in November home for a week and readmiited to the ICU for a week, just got home a day before Christmas Eve.

Part of my problems is my airway is badly damaged and I have severe vocal chord dysfuction meaning my airway shuts down very fast, I was so sick from a cold, coughing so much that my airway was swollen shut that they could hardly get a tube down it.

One thing I have learned is you have to advocate for yourself, if you are not getting better, open your mouth, I have always been worried about being a pain in the neck or troublesome, it almost killed me. A lot of doctors will never step on each others toes, especially in a small world like CF world where all the doctors know each other.

I am glad you are getting good care, I don't have a good idea of my PFTS because I can't blow hard right now but at one point they were very high. I plan on getting them back there, and we are diligently trying everything we can to get me back to where I was running and exercising daily, which is key to health
 
J

JennifersHope

New member
I actually have switched clinics as well. I thought I was getting very good care where I was going, I really, really trusted with my whole heart. I was actually undiagnosed with CF by them based on one nasal PD test t that was done in a clinical trial setting. I dont' want to say very much more about it right now but I have been reevlauated by top specilist and lets just leave it at many many things were left untreated because they became fixated on me not having CF.

I was getting sicker and sicker as well, I have a past medical history of culturing PA and MRSA but the entire time I was at my "other clinic" who I still really like as people just think they missed the bigger picture, they only did one sputum culture.

Anyway, I was not getting better.... for about a year, and I was told it was VCD which I without a doubt have a very severe case of, however, I switched to a different place and they did a sputum, they did a six minute walk that day and I was sating low, needed to go back on oxygen and cultures showed MAC six times now.

Because I had night sweats, pretty big changes in catscan, low grade fevers and felt like I had the flu, we decided to do treatment... I have been being treated since October for the MAC it took a very long time, months and months for the cultures to come back. It took about eight weeks before I noticed any change but the night sweats and fevers are gone. I am on IV Cipro, Zyvox and Amikacian, I am on oral Bactrim.

I was told the Zyvox will be the first IV they get rid of and they picked that one because they typically treat you past cultures as well, just in case it doesn't show up.

I have been sick as crap intubated on life support for 11 days in November home for a week and readmiited to the ICU for a week, just got home a day before Christmas Eve.

Part of my problems is my airway is badly damaged and I have severe vocal chord dysfuction meaning my airway shuts down very fast, I was so sick from a cold, coughing so much that my airway was swollen shut that they could hardly get a tube down it.

One thing I have learned is you have to advocate for yourself, if you are not getting better, open your mouth, I have always been worried about being a pain in the neck or troublesome, it almost killed me. A lot of doctors will never step on each others toes, especially in a small world like CF world where all the doctors know each other.

I am glad you are getting good care, I don't have a good idea of my PFTS because I can't blow hard right now but at one point they were very high. I plan on getting them back there, and we are diligently trying everything we can to get me back to where I was running and exercising daily, which is key to health
 
J

JennifersHope

New member
Oh and btw the treatment for MAC totally blows.... I thought three weeks of IVs was a lot. I don't even have an idea of when I will be done, I am on them indefinitely, but about a year... and it takes hours a day of gravity infusion because my lovely horrible but free insurance will not pay for the balls. It is a daunting feeling to do this day in and day out especially not knowing when it is going to end, but I know full well that resistance is a real issue and once you start treatment you have to stay committed to it.

The medications make me feel sick, but not taking them made me sicker.. so IMO it is a lose lose situation and I sometimes go back and fourth daily which sickness i would rather feel.
 
J

JennifersHope

New member
Oh and btw the treatment for MAC totally blows.... I thought three weeks of IVs was a lot. I don't even have an idea of when I will be done, I am on them indefinitely, but about a year... and it takes hours a day of gravity infusion because my lovely horrible but free insurance will not pay for the balls. It is a daunting feeling to do this day in and day out especially not knowing when it is going to end, but I know full well that resistance is a real issue and once you start treatment you have to stay committed to it.

The medications make me feel sick, but not taking them made me sicker.. so IMO it is a lose lose situation and I sometimes go back and fourth daily which sickness i would rather feel.
 
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