MAC, or something....

[franzie2984]

Hi All,<br><br>I have cultured Mycobacterium Avium (typically referred to as MAC) for several years now.  I started medication for it 2 years ago but had to stop after 6 months because the combination of all of those medications made me feel quite sick.  <br><br>I currently culture regular old staph not MSRA and the MAC and not much else.  My PFTs are in the mid 90s but used to be over 100%.  My doctor frequently tells me I am "fine" since I dont meet his checklist of symptoms for an exacerbation i.e. losing tons of lung function, weight etc...  But I feel like crap pretty much all the time.  I cough a TON now but every doctor I see says my lungs are amazingly clear and I never seem to have symptoms of any particular infection.  3 months ago I convinced the doctor to give me some antibiotics that wouldn't impact or improve the MAC infection to see if I felt better.  I completely stopped coughing, felt great, and my blood sugars were fantastic (I have CFRD).  After I stopped them I felt like crap again very soon.  I think he gave me like 10 days of Bactrim DS 800/160.  Seems to me that this is something other than the MAC infection bothering me.  But what??<br><br>I cough a lot but most of it feels like sinus drainage etc and is not productive.  Apparently my lungs are clear.  I feel a decline in function though.  Not something tangible, just how I feel.<br><br>This is driving me batty and any information would be greatly appreciated!<br><br><br>

 

[franzie2984]

Hi All,<br><br>I have cultured Mycobacterium Avium (typically referred to as MAC) for several years now. I started medication for it 2 years ago but had to stop after 6 months because the combination of all of those medications made me feel quite sick. <br><br>I currently culture regular old staph not MSRA and the MAC and not much else. My PFTs are in the mid 90s but used to be over 100%. My doctor frequently tells me I am "fine" since I dont meet his checklist of symptoms for an exacerbation i.e. losing tons of lung function, weight etc... But I feel like crap pretty much all the time. I cough a TON now but every doctor I see says my lungs are amazingly clear and I never seem to have symptoms of any particular infection. 3 months ago I convinced the doctor to give me some antibiotics that wouldn't impact or improve the MAC infection to see if I felt better. I completely stopped coughing, felt great, and my blood sugars were fantastic (I have CFRD). After I stopped them I felt like crap again very soon. I think he gave me like 10 days of Bactrim DS 800/160. Seems to me that this is something other than the MAC infection bothering me. But what??<br><br>I cough a lot but most of it feels like sinus drainage etc and is not productive. Apparently my lungs are clear. I feel a decline in function though. Not something tangible, just how I feel.<br><br>This is driving me batty and any information would be greatly appreciated!<br><br><br>

 

[franzie2984]

Hi All,<br><br>I have cultured Mycobacterium Avium (typically referred to as MAC) for several years now. I started medication for it 2 years ago but had to stop after 6 months because the combination of all of those medications made me feel quite sick. <br><br>I currently culture regular old staph not MSRA and the MAC and not much else. My PFTs are in the mid 90s but used to be over 100%. My doctor frequently tells me I am "fine" since I dont meet his checklist of symptoms for an exacerbation i.e. losing tons of lung function, weight etc... But I feel like crap pretty much all the time. I cough a TON now but every doctor I see says my lungs are amazingly clear and I never seem to have symptoms of any particular infection. 3 months ago I convinced the doctor to give me some antibiotics that wouldn't impact or improve the MAC infection to see if I felt better. I completely stopped coughing, felt great, and my blood sugars were fantastic (I have CFRD). After I stopped them I felt like crap again very soon. I think he gave me like 10 days of Bactrim DS 800/160. Seems to me that this is something other than the MAC infection bothering me. But what??<br><br>I cough a lot but most of it feels like sinus drainage etc and is not productive. Apparently my lungs are clear. I feel a decline in function though. Not something tangible, just how I feel.<br><br>This is driving me batty and any information would be greatly appreciated!<br><br><br>

 

[franzie2984]

Clarification** LOL. I am wondering whether to go ahead and do a round of MAC treatment which would mean 18 months on a bunch of crap, or whether I should push my doctor to look elsewhere for the source of my troubles. Anyone else go through a MAC treatment??

I have ever so slowly declined in weight about 15 lbs over the last 2 years and 5-8% in lung function. I currently weigh 110 am 5'4" and 27 year old female.

 

[franzie2984]

Clarification** LOL. I am wondering whether to go ahead and do a round of MAC treatment which would mean 18 months on a bunch of crap, or whether I should push my doctor to look elsewhere for the source of my troubles. Anyone else go through a MAC treatment??

I have ever so slowly declined in weight about 15 lbs over the last 2 years and 5-8% in lung function. I currently weigh 110 am 5'4" and 27 year old female.

 

[franzie2984]

Clarification** LOL. I am wondering whether to go ahead and do a round of MAC treatment which would mean 18 months on a bunch of crap, or whether I should push my doctor to look elsewhere for the source of my troubles. Anyone else go through a MAC treatment??
<br />
<br />I have ever so slowly declined in weight about 15 lbs over the last 2 years and 5-8% in lung function. I currently weigh 110 am 5'4" and 27 year old female.

 

[tesorotiffa]

This sounds like a very frustrating experience to be going through. I wish I had some input, but I've never cultured MAC, only MRSA and Pseudomonas. I hope you get some good feedback from the other members on here!

 

[tesorotiffa]

This sounds like a very frustrating experience to be going through. I wish I had some input, but I've never cultured MAC, only MRSA and Pseudomonas. I hope you get some good feedback from the other members on here!

 

[tesorotiffa]

This sounds like a very frustrating experience to be going through. I wish I had some input, but I've never cultured MAC, only MRSA and Pseudomonas. I hope you get some good feedback from the other members on here!

 

[theLostMiler]

hmm. maybe the other bug is overwhelming the MAC (b/c I've always believed it is not as harder and can be crowded) and so this other bug is what is causing problems. I have b. cepacia and typically when I do treatment for one, I end up having to follow up with treatment for the other b/c by killing off one, you are creating room for the other to grow.

the constant cough does make me think of TB related stuff, but if you felt better on abx not treating it, then that seems clear that you need something. I find it unusualy your doc doesnt listen to how you are feeling. Pfts are not everything.

I can only think a bronch, which I haven't had and my doctors dont like to do b/c of the risk of adding something, but maybe at this point it could be an option. If you are having sinus issues do you see an ENT regularly? Maybe you just need a sinus surgery?

 

[theLostMiler]

hmm. maybe the other bug is overwhelming the MAC (b/c I've always believed it is not as harder and can be crowded) and so this other bug is what is causing problems. I have b. cepacia and typically when I do treatment for one, I end up having to follow up with treatment for the other b/c by killing off one, you are creating room for the other to grow.

the constant cough does make me think of TB related stuff, but if you felt better on abx not treating it, then that seems clear that you need something. I find it unusualy your doc doesnt listen to how you are feeling. Pfts are not everything.

I can only think a bronch, which I haven't had and my doctors dont like to do b/c of the risk of adding something, but maybe at this point it could be an option. If you are having sinus issues do you see an ENT regularly? Maybe you just need a sinus surgery?

 

[theLostMiler]

hmm. maybe the other bug is overwhelming the MAC (b/c I've always believed it is not as harder and can be crowded) and so this other bug is what is causing problems. I have b. cepacia and typically when I do treatment for one, I end up having to follow up with treatment for the other b/c by killing off one, you are creating room for the other to grow.
<br />
<br />the constant cough does make me think of TB related stuff, but if you felt better on abx not treating it, then that seems clear that you need something. I find it unusualy your doc doesnt listen to how you are feeling. Pfts are not everything.
<br />
<br />I can only think a bronch, which I haven't had and my doctors dont like to do b/c of the risk of adding something, but maybe at this point it could be an option. If you are having sinus issues do you see an ENT regularly? Maybe you just need a sinus surgery?
<br />

 

[franzie2984]

Thanks for the input to both<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am currently wondering how many CFers are treated for MAC infections?? I have read some research regarding this and apparently they are treating for this more now and this was not the case in the past. Anywho: I went to the CF doctor today actually and will have CT scan of lungs and then talk to the doctor after that to discuss treatment stuff (but he did give me some antibiotics in the meantime). I really am quite wary to have such a long treatment and was hoping someone was familiar with this!! Anyone have long term treatments for Pseudomonas or other hard to treat bacterias with good outcomes? I would expect this might be a similar experience since they are both hard to treat and slow growing bacterias.

 

[franzie2984]

Thanks for the input to both<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am currently wondering how many CFers are treated for MAC infections?? I have read some research regarding this and apparently they are treating for this more now and this was not the case in the past. Anywho: I went to the CF doctor today actually and will have CT scan of lungs and then talk to the doctor after that to discuss treatment stuff (but he did give me some antibiotics in the meantime). I really am quite wary to have such a long treatment and was hoping someone was familiar with this!! Anyone have long term treatments for Pseudomonas or other hard to treat bacterias with good outcomes? I would expect this might be a similar experience since they are both hard to treat and slow growing bacterias.

 

[franzie2984]

Thanks for the input to both<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am currently wondering how many CFers are treated for MAC infections?? I have read some research regarding this and apparently they are treating for this more now and this was not the case in the past. Anywho: I went to the CF doctor today actually and will have CT scan of lungs and then talk to the doctor after that to discuss treatment stuff (but he did give me some antibiotics in the meantime). I really am quite wary to have such a long treatment and was hoping someone was familiar with this!! Anyone have long term treatments for Pseudomonas or other hard to treat bacterias with good outcomes? I would expect this might be a similar experience since they are both hard to treat and slow growing bacterias.

 

[theLostMiler]

I have long term treatments to treat my b. cepacia, almost as long as when I have been treated for M. Abscessus. I find I need longer times even for the b. cepacia.

 

[theLostMiler]

I have long term treatments to treat my b. cepacia, almost as long as when I have been treated for M. Abscessus. I find I need longer times even for the b. cepacia.

 

[theLostMiler]

I have long term treatments to treat my b. cepacia, almost as long as when I have been treated for M. Abscessus. I find I need longer times even for the b. cepacia.
<br />

 

[Ldude916]

I was treated for 18 months for MAC using ethambutol and rifampin. Before my doc tested for MAC, I reported symptoms like decrease in energy, "feeling crappy", weight loss, hair loss, and steady decrease in lung function and hospitalizations were not helping.

After 18 months, the MAC was cleared up and those symptoms all went away. I also had to stop taking the drugs b/c they started to affect my eyesight (common side effect), but as soon as I stopped the drugs, my eyesight got back to normal.

My understanding is to treat MAC, you need to be on a 18-24 month course of antibiotics. I would definitely be concerned that 6 mo. of treatment was not enough. I'm not convinced that a CT will show the doctor much about what you have growing....you may have to give him some wicked sputum culture (like 2 tblsp) so he can culture it out for MAC and other bacteria that take a long time for the lab to grow out and confirm. I suggest getting a sterile cup the day before you see your doc and spend the day/night hacking into in (storing it in the fridge) and give him a good culture.

Good luck!

 

[Ldude916]

I was treated for 18 months for MAC using ethambutol and rifampin. Before my doc tested for MAC, I reported symptoms like decrease in energy, "feeling crappy", weight loss, hair loss, and steady decrease in lung function and hospitalizations were not helping.

After 18 months, the MAC was cleared up and those symptoms all went away. I also had to stop taking the drugs b/c they started to affect my eyesight (common side effect), but as soon as I stopped the drugs, my eyesight got back to normal.

My understanding is to treat MAC, you need to be on a 18-24 month course of antibiotics. I would definitely be concerned that 6 mo. of treatment was not enough. I'm not convinced that a CT will show the doctor much about what you have growing....you may have to give him some wicked sputum culture (like 2 tblsp) so he can culture it out for MAC and other bacteria that take a long time for the lab to grow out and confirm. I suggest getting a sterile cup the day before you see your doc and spend the day/night hacking into in (storing it in the fridge) and give him a good culture.

Good luck!