When it rains it pours...

ladybug · Nov 20, 2008

Hello.

I went to clinic yesterday and found I'm to be on this new abx IV for another 2 weeks, totalling my course to 5 1/2 weeks.

I also found out in Sept. I cultured MAC (Mycobacterium avium complex). They're waiting to see if it causes problems in the future and if my recent culture grows it as well, since it takes 4-6 weeks to grow in sputum).

I'm totally stressed and feeling defeated. When will the bad news stop? How much can one take really?

The abx. are giving me a rise in my pfts, which is good, but I'm still loosing weight, still coughing up the ominous-looking stuff and still just feeling tired.

The new diagnosis of MAC was the icing on the cake. I've done a search on here for peoples' experience with this bacteria and this gives me even less hope. Sounds like I'll have it forever and likely need months, if not years of continuous antibiotics when we decide to treat it. These abx. are likely to be strong and make me very very sick with side effects.

I don't mean to rant and complain, but this would have perhaps been a bit easier to handle had my DH not deployed for another 4 months (he's been gone for the past 2 months while all this has been happening). He is my main support system and usually can put things in perspective for me, if not take my mind off things entirely.

This has been a difficult run for me... I don't know how much a person can handle in the form of bad news within a one month period.

Not sure what, if anything, I'm looking for here... Certainly not pity, as I know MANY of you have it far worse than me. Perhaps someone with MAC could put a silver lining on all of this? Perhaps it isn't all THAT bad??? Urgh.

What's really sad is I used to think my night sweats, decline in FEV1, cough, etc. were attributable to TB (silly I know)... And, I used to find myself thinking that would be easier to handle cause I know there is treatment for TB and then I'd know its not the CF causing the issue, its something totally treatable. It was a weird, twisted way of looking at things, but that's how I felt. Now that I have "TB's cousin", I don't feel any better about it OR the treatment for it. And, it appears FEV1 declines anyway with MAC AND I can't be on azithro anymore to maintain my CF... So, this news was not the "good" news I expected or hoped for if I had had TB.

I saw in prior posts a mention to get the opinion of Jewish Childrens' Hospital in CO for MAC. Perhaps when DH returns and I'm able to make that trek, I will, however, right now, I'm stuck where I'm at.

Thanks for your support everyone.

ladybug · Nov 20, 2008

Hello.

I went to clinic yesterday and found I'm to be on this new abx IV for another 2 weeks, totalling my course to 5 1/2 weeks.

I also found out in Sept. I cultured MAC (Mycobacterium avium complex). They're waiting to see if it causes problems in the future and if my recent culture grows it as well, since it takes 4-6 weeks to grow in sputum).

I'm totally stressed and feeling defeated. When will the bad news stop? How much can one take really?

The abx. are giving me a rise in my pfts, which is good, but I'm still loosing weight, still coughing up the ominous-looking stuff and still just feeling tired.

The new diagnosis of MAC was the icing on the cake. I've done a search on here for peoples' experience with this bacteria and this gives me even less hope. Sounds like I'll have it forever and likely need months, if not years of continuous antibiotics when we decide to treat it. These abx. are likely to be strong and make me very very sick with side effects.

I don't mean to rant and complain, but this would have perhaps been a bit easier to handle had my DH not deployed for another 4 months (he's been gone for the past 2 months while all this has been happening). He is my main support system and usually can put things in perspective for me, if not take my mind off things entirely.

This has been a difficult run for me... I don't know how much a person can handle in the form of bad news within a one month period.

Not sure what, if anything, I'm looking for here... Certainly not pity, as I know MANY of you have it far worse than me. Perhaps someone with MAC could put a silver lining on all of this? Perhaps it isn't all THAT bad??? Urgh.

What's really sad is I used to think my night sweats, decline in FEV1, cough, etc. were attributable to TB (silly I know)... And, I used to find myself thinking that would be easier to handle cause I know there is treatment for TB and then I'd know its not the CF causing the issue, its something totally treatable. It was a weird, twisted way of looking at things, but that's how I felt. Now that I have "TB's cousin", I don't feel any better about it OR the treatment for it. And, it appears FEV1 declines anyway with MAC AND I can't be on azithro anymore to maintain my CF... So, this news was not the "good" news I expected or hoped for if I had had TB.

I saw in prior posts a mention to get the opinion of Jewish Childrens' Hospital in CO for MAC. Perhaps when DH returns and I'm able to make that trek, I will, however, right now, I'm stuck where I'm at.

Thanks for your support everyone.

ladybug · Nov 20, 2008

Hello.

I went to clinic yesterday and found I'm to be on this new abx IV for another 2 weeks, totalling my course to 5 1/2 weeks.

I also found out in Sept. I cultured MAC (Mycobacterium avium complex). They're waiting to see if it causes problems in the future and if my recent culture grows it as well, since it takes 4-6 weeks to grow in sputum).

I'm totally stressed and feeling defeated. When will the bad news stop? How much can one take really?

The abx. are giving me a rise in my pfts, which is good, but I'm still loosing weight, still coughing up the ominous-looking stuff and still just feeling tired.

The new diagnosis of MAC was the icing on the cake. I've done a search on here for peoples' experience with this bacteria and this gives me even less hope. Sounds like I'll have it forever and likely need months, if not years of continuous antibiotics when we decide to treat it. These abx. are likely to be strong and make me very very sick with side effects.

I don't mean to rant and complain, but this would have perhaps been a bit easier to handle had my DH not deployed for another 4 months (he's been gone for the past 2 months while all this has been happening). He is my main support system and usually can put things in perspective for me, if not take my mind off things entirely.

This has been a difficult run for me... I don't know how much a person can handle in the form of bad news within a one month period.

Not sure what, if anything, I'm looking for here... Certainly not pity, as I know MANY of you have it far worse than me. Perhaps someone with MAC could put a silver lining on all of this? Perhaps it isn't all THAT bad??? Urgh.

What's really sad is I used to think my night sweats, decline in FEV1, cough, etc. were attributable to TB (silly I know)... And, I used to find myself thinking that would be easier to handle cause I know there is treatment for TB and then I'd know its not the CF causing the issue, its something totally treatable. It was a weird, twisted way of looking at things, but that's how I felt. Now that I have "TB's cousin", I don't feel any better about it OR the treatment for it. And, it appears FEV1 declines anyway with MAC AND I can't be on azithro anymore to maintain my CF... So, this news was not the "good" news I expected or hoped for if I had had TB.

I saw in prior posts a mention to get the opinion of Jewish Childrens' Hospital in CO for MAC. Perhaps when DH returns and I'm able to make that trek, I will, however, right now, I'm stuck where I'm at.

Thanks for your support everyone.

ladybug · Nov 20, 2008

Hello.

I went to clinic yesterday and found I'm to be on this new abx IV for another 2 weeks, totalling my course to 5 1/2 weeks.

I also found out in Sept. I cultured MAC (Mycobacterium avium complex). They're waiting to see if it causes problems in the future and if my recent culture grows it as well, since it takes 4-6 weeks to grow in sputum).

I'm totally stressed and feeling defeated. When will the bad news stop? How much can one take really?

The abx. are giving me a rise in my pfts, which is good, but I'm still loosing weight, still coughing up the ominous-looking stuff and still just feeling tired.

The new diagnosis of MAC was the icing on the cake. I've done a search on here for peoples' experience with this bacteria and this gives me even less hope. Sounds like I'll have it forever and likely need months, if not years of continuous antibiotics when we decide to treat it. These abx. are likely to be strong and make me very very sick with side effects.

I don't mean to rant and complain, but this would have perhaps been a bit easier to handle had my DH not deployed for another 4 months (he's been gone for the past 2 months while all this has been happening). He is my main support system and usually can put things in perspective for me, if not take my mind off things entirely.

This has been a difficult run for me... I don't know how much a person can handle in the form of bad news within a one month period.

Not sure what, if anything, I'm looking for here... Certainly not pity, as I know MANY of you have it far worse than me. Perhaps someone with MAC could put a silver lining on all of this? Perhaps it isn't all THAT bad??? Urgh.

What's really sad is I used to think my night sweats, decline in FEV1, cough, etc. were attributable to TB (silly I know)... And, I used to find myself thinking that would be easier to handle cause I know there is treatment for TB and then I'd know its not the CF causing the issue, its something totally treatable. It was a weird, twisted way of looking at things, but that's how I felt. Now that I have "TB's cousin", I don't feel any better about it OR the treatment for it. And, it appears FEV1 declines anyway with MAC AND I can't be on azithro anymore to maintain my CF... So, this news was not the "good" news I expected or hoped for if I had had TB.

I saw in prior posts a mention to get the opinion of Jewish Childrens' Hospital in CO for MAC. Perhaps when DH returns and I'm able to make that trek, I will, however, right now, I'm stuck where I'm at.

Thanks for your support everyone.

ladybug · Nov 20, 2008

Hello.
 
 I went to clinic yesterday and found I'm to be on this new abx IV for another 2 weeks, totalling my course to 5 1/2 weeks.
 
 I also found out in Sept. I cultured MAC (Mycobacterium avium complex). They're waiting to see if it causes problems in the future and if my recent culture grows it as well, since it takes 4-6 weeks to grow in sputum).
 
 I'm totally stressed and feeling defeated. When will the bad news stop? How much can one take really?
 
 The abx. are giving me a rise in my pfts, which is good, but I'm still loosing weight, still coughing up the ominous-looking stuff and still just feeling tired.
 
 The new diagnosis of MAC was the icing on the cake. I've done a search on here for peoples' experience with this bacteria and this gives me even less hope. Sounds like I'll have it forever and likely need months, if not years of continuous antibiotics when we decide to treat it. These abx. are likely to be strong and make me very very sick with side effects.
 
 I don't mean to rant and complain, but this would have perhaps been a bit easier to handle had my DH not deployed for another 4 months (he's been gone for the past 2 months while all this has been happening). He is my main support system and usually can put things in perspective for me, if not take my mind off things entirely.
 
 This has been a difficult run for me... I don't know how much a person can handle in the form of bad news within a one month period.
 
 Not sure what, if anything, I'm looking for here... Certainly not pity, as I know MANY of you have it far worse than me. Perhaps someone with MAC could put a silver lining on all of this? Perhaps it isn't all THAT bad??? Urgh.
 
 What's really sad is I used to think my night sweats, decline in FEV1, cough, etc. were attributable to TB (silly I know)... And, I used to find myself thinking that would be easier to handle cause I know there is treatment for TB and then I'd know its not the CF causing the issue, its something totally treatable. It was a weird, twisted way of looking at things, but that's how I felt. Now that I have "TB's cousin", I don't feel any better about it OR the treatment for it. And, it appears FEV1 declines anyway with MAC AND I can't be on azithro anymore to maintain my CF... So, this news was not the "good" news I expected or hoped for if I had had TB.
 
 I saw in prior posts a mention to get the opinion of Jewish Childrens' Hospital in CO for MAC. Perhaps when DH returns and I'm able to make that trek, I will, however, right now, I'm stuck where I'm at.
 
 Thanks for your support everyone.

Juliet · Nov 20, 2008

MAC sucks, but it can be treated if your MAC bugs show a sensitivity. I cultured it in 2006 via bronchoscopy (it never showed up in sputum back then). I was on a 3 abx regimen for 18 months: Rifampin, Ethambutol and Azithromycin. All were orals. My FEVs went from a low in the 50s to my current baseline in the low 70s. i don't have a recent pre-MAC FEV since I hadn't had one since the 1980s. A MAC infection is what ultimately led to my CF dx.

MAC is very slow growing. It takes a long time to flare up, hence it takes a long time to kill since the life cycle is much longer. The Abx are more like tickling the MAC to death. <img src=""> That combo isn't fun, but I managed to keep up a full time job, family and lots of side activities, though I didn't nearly have the energy I used to before MAC. The side effects are tiredness, upset stomach and the usual gastro issues with taking abx. I had my eyes checked every few months (one of the drugs can cause a retina issue) and blood drawn for liver test monthly. Compared to the side effects of IV abx (like Tobramycin) MAC orals are cake, except for the fact that they drag on for 18 months and not just 2 weeks. <img src="">

Life after MAC... I had a bronch which came up clear. No MAC, but my Staph Aureus (which I've been culturing since the 1980s was still there). My SA was also suppressed during the MAC treatment and I really had no other major flare-ups. After MAC treatment (3 abx) stopped my Staph went insane. All the usual abx for my staph that had worked for 20+ years would knock it out a bit, but as soon as I stopped the Staph would flare up again. I went through 4 or 5 months of try this, try that and always a week or two after stopping I'd need abx again for my staph.

I did my first IV abx (Sept this year) to try to get the staph under control. That finally kicked the little buggers! Unfortunately MAC is showing up again in my sputum as of a month ago, but until it cultures in high concentrations we're not going to treat it. I don't have my new MAC sensitivities back yet since the lab is still growing them (that's a month or two long process). Docs will treat the Staph flare-ups and keep an eye on the MAC sputum counts sensitivities & my FEVs. If things change then we'll reevaluate the no MAC treatment situation.

Hang in there. MAC doesn't necessarily guarantee a drop in FEV. I sort of freaked out during my creative googling episode when I recultured it after thinking I had successfully gotten rid of it. There is a lot of really negatively hyped info about MAC on some other non-CF myco sites. Most of the people posting there would totally freak if they had to put up with the CF stuff & med dosages we handle as a matter of routine. So keep things in perspective & keep your chin up. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Most of all talk with your Doctor about your concerns. My clinic visit a few weeks ago did me a WORLD of good since my Doc and I had a very long (over an hour) discussion about dosing philosophy and when to treat vs. not treat and all that. ~Juliet

Juliet · Nov 20, 2008

MAC sucks, but it can be treated if your MAC bugs show a sensitivity. I cultured it in 2006 via bronchoscopy (it never showed up in sputum back then). I was on a 3 abx regimen for 18 months: Rifampin, Ethambutol and Azithromycin. All were orals. My FEVs went from a low in the 50s to my current baseline in the low 70s. i don't have a recent pre-MAC FEV since I hadn't had one since the 1980s. A MAC infection is what ultimately led to my CF dx.

MAC is very slow growing. It takes a long time to flare up, hence it takes a long time to kill since the life cycle is much longer. The Abx are more like tickling the MAC to death. <img src=""> That combo isn't fun, but I managed to keep up a full time job, family and lots of side activities, though I didn't nearly have the energy I used to before MAC. The side effects are tiredness, upset stomach and the usual gastro issues with taking abx. I had my eyes checked every few months (one of the drugs can cause a retina issue) and blood drawn for liver test monthly. Compared to the side effects of IV abx (like Tobramycin) MAC orals are cake, except for the fact that they drag on for 18 months and not just 2 weeks. <img src="">

Life after MAC... I had a bronch which came up clear. No MAC, but my Staph Aureus (which I've been culturing since the 1980s was still there). My SA was also suppressed during the MAC treatment and I really had no other major flare-ups. After MAC treatment (3 abx) stopped my Staph went insane. All the usual abx for my staph that had worked for 20+ years would knock it out a bit, but as soon as I stopped the Staph would flare up again. I went through 4 or 5 months of try this, try that and always a week or two after stopping I'd need abx again for my staph.

I did my first IV abx (Sept this year) to try to get the staph under control. That finally kicked the little buggers! Unfortunately MAC is showing up again in my sputum as of a month ago, but until it cultures in high concentrations we're not going to treat it. I don't have my new MAC sensitivities back yet since the lab is still growing them (that's a month or two long process). Docs will treat the Staph flare-ups and keep an eye on the MAC sputum counts sensitivities & my FEVs. If things change then we'll reevaluate the no MAC treatment situation.

Hang in there. MAC doesn't necessarily guarantee a drop in FEV. I sort of freaked out during my creative googling episode when I recultured it after thinking I had successfully gotten rid of it. There is a lot of really negatively hyped info about MAC on some other non-CF myco sites. Most of the people posting there would totally freak if they had to put up with the CF stuff & med dosages we handle as a matter of routine. So keep things in perspective & keep your chin up. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Most of all talk with your Doctor about your concerns. My clinic visit a few weeks ago did me a WORLD of good since my Doc and I had a very long (over an hour) discussion about dosing philosophy and when to treat vs. not treat and all that. ~Juliet

Juliet · Nov 20, 2008

MAC sucks, but it can be treated if your MAC bugs show a sensitivity. I cultured it in 2006 via bronchoscopy (it never showed up in sputum back then). I was on a 3 abx regimen for 18 months: Rifampin, Ethambutol and Azithromycin. All were orals. My FEVs went from a low in the 50s to my current baseline in the low 70s. i don't have a recent pre-MAC FEV since I hadn't had one since the 1980s. A MAC infection is what ultimately led to my CF dx.

MAC is very slow growing. It takes a long time to flare up, hence it takes a long time to kill since the life cycle is much longer. The Abx are more like tickling the MAC to death. <img src=""> That combo isn't fun, but I managed to keep up a full time job, family and lots of side activities, though I didn't nearly have the energy I used to before MAC. The side effects are tiredness, upset stomach and the usual gastro issues with taking abx. I had my eyes checked every few months (one of the drugs can cause a retina issue) and blood drawn for liver test monthly. Compared to the side effects of IV abx (like Tobramycin) MAC orals are cake, except for the fact that they drag on for 18 months and not just 2 weeks. <img src="">

Life after MAC... I had a bronch which came up clear. No MAC, but my Staph Aureus (which I've been culturing since the 1980s was still there). My SA was also suppressed during the MAC treatment and I really had no other major flare-ups. After MAC treatment (3 abx) stopped my Staph went insane. All the usual abx for my staph that had worked for 20+ years would knock it out a bit, but as soon as I stopped the Staph would flare up again. I went through 4 or 5 months of try this, try that and always a week or two after stopping I'd need abx again for my staph.

I did my first IV abx (Sept this year) to try to get the staph under control. That finally kicked the little buggers! Unfortunately MAC is showing up again in my sputum as of a month ago, but until it cultures in high concentrations we're not going to treat it. I don't have my new MAC sensitivities back yet since the lab is still growing them (that's a month or two long process). Docs will treat the Staph flare-ups and keep an eye on the MAC sputum counts sensitivities & my FEVs. If things change then we'll reevaluate the no MAC treatment situation.

Hang in there. MAC doesn't necessarily guarantee a drop in FEV. I sort of freaked out during my creative googling episode when I recultured it after thinking I had successfully gotten rid of it. There is a lot of really negatively hyped info about MAC on some other non-CF myco sites. Most of the people posting there would totally freak if they had to put up with the CF stuff & med dosages we handle as a matter of routine. So keep things in perspective & keep your chin up. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Most of all talk with your Doctor about your concerns. My clinic visit a few weeks ago did me a WORLD of good since my Doc and I had a very long (over an hour) discussion about dosing philosophy and when to treat vs. not treat and all that. ~Juliet

Juliet · Nov 20, 2008

MAC sucks, but it can be treated if your MAC bugs show a sensitivity. I cultured it in 2006 via bronchoscopy (it never showed up in sputum back then). I was on a 3 abx regimen for 18 months: Rifampin, Ethambutol and Azithromycin. All were orals. My FEVs went from a low in the 50s to my current baseline in the low 70s. i don't have a recent pre-MAC FEV since I hadn't had one since the 1980s. A MAC infection is what ultimately led to my CF dx.

MAC is very slow growing. It takes a long time to flare up, hence it takes a long time to kill since the life cycle is much longer. The Abx are more like tickling the MAC to death. <img src=""> That combo isn't fun, but I managed to keep up a full time job, family and lots of side activities, though I didn't nearly have the energy I used to before MAC. The side effects are tiredness, upset stomach and the usual gastro issues with taking abx. I had my eyes checked every few months (one of the drugs can cause a retina issue) and blood drawn for liver test monthly. Compared to the side effects of IV abx (like Tobramycin) MAC orals are cake, except for the fact that they drag on for 18 months and not just 2 weeks. <img src="">

Life after MAC... I had a bronch which came up clear. No MAC, but my Staph Aureus (which I've been culturing since the 1980s was still there). My SA was also suppressed during the MAC treatment and I really had no other major flare-ups. After MAC treatment (3 abx) stopped my Staph went insane. All the usual abx for my staph that had worked for 20+ years would knock it out a bit, but as soon as I stopped the Staph would flare up again. I went through 4 or 5 months of try this, try that and always a week or two after stopping I'd need abx again for my staph.

I did my first IV abx (Sept this year) to try to get the staph under control. That finally kicked the little buggers! Unfortunately MAC is showing up again in my sputum as of a month ago, but until it cultures in high concentrations we're not going to treat it. I don't have my new MAC sensitivities back yet since the lab is still growing them (that's a month or two long process). Docs will treat the Staph flare-ups and keep an eye on the MAC sputum counts sensitivities & my FEVs. If things change then we'll reevaluate the no MAC treatment situation.

Hang in there. MAC doesn't necessarily guarantee a drop in FEV. I sort of freaked out during my creative googling episode when I recultured it after thinking I had successfully gotten rid of it. There is a lot of really negatively hyped info about MAC on some other non-CF myco sites. Most of the people posting there would totally freak if they had to put up with the CF stuff & med dosages we handle as a matter of routine. So keep things in perspective & keep your chin up. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Most of all talk with your Doctor about your concerns. My clinic visit a few weeks ago did me a WORLD of good since my Doc and I had a very long (over an hour) discussion about dosing philosophy and when to treat vs. not treat and all that. ~Juliet

Juliet · Nov 20, 2008

MAC sucks, but it can be treated if your MAC bugs show a sensitivity. I cultured it in 2006 via bronchoscopy (it never showed up in sputum back then). I was on a 3 abx regimen for 18 months: Rifampin, Ethambutol and Azithromycin. All were orals. My FEVs went from a low in the 50s to my current baseline in the low 70s. i don't have a recent pre-MAC FEV since I hadn't had one since the 1980s. A MAC infection is what ultimately led to my CF dx.
 
 MAC is very slow growing. It takes a long time to flare up, hence it takes a long time to kill since the life cycle is much longer. The Abx are more like tickling the MAC to death. <img src=""> That combo isn't fun, but I managed to keep up a full time job, family and lots of side activities, though I didn't nearly have the energy I used to before MAC. The side effects are tiredness, upset stomach and the usual gastro issues with taking abx. I had my eyes checked every few months (one of the drugs can cause a retina issue) and blood drawn for liver test monthly. Compared to the side effects of IV abx (like Tobramycin) MAC orals are cake, except for the fact that they drag on for 18 months and not just 2 weeks. <img src="">
 
 Life after MAC... I had a bronch which came up clear. No MAC, but my Staph Aureus (which I've been culturing since the 1980s was still there). My SA was also suppressed during the MAC treatment and I really had no other major flare-ups. After MAC treatment (3 abx) stopped my Staph went insane. All the usual abx for my staph that had worked for 20+ years would knock it out a bit, but as soon as I stopped the Staph would flare up again. I went through 4 or 5 months of try this, try that and always a week or two after stopping I'd need abx again for my staph.
 
 I did my first IV abx (Sept this year) to try to get the staph under control. That finally kicked the little buggers! Unfortunately MAC is showing up again in my sputum as of a month ago, but until it cultures in high concentrations we're not going to treat it. I don't have my new MAC sensitivities back yet since the lab is still growing them (that's a month or two long process). Docs will treat the Staph flare-ups and keep an eye on the MAC sputum counts sensitivities & my FEVs. If things change then we'll reevaluate the no MAC treatment situation.
 
 Hang in there. MAC doesn't necessarily guarantee a drop in FEV. I sort of freaked out during my creative googling episode when I recultured it after thinking I had successfully gotten rid of it. There is a lot of really negatively hyped info about MAC on some other non-CF myco sites. Most of the people posting there would totally freak if they had to put up with the CF stuff & med dosages we handle as a matter of routine. So keep things in perspective & keep your chin up. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Most of all talk with your Doctor about your concerns. My clinic visit a few weeks ago did me a WORLD of good since my Doc and I had a very long (over an hour) discussion about dosing philosophy and when to treat vs. not treat and all that. ~Juliet

Diane · Nov 21, 2008

If it makes you feel any better i have a lot of the same symptoms as you and my Dr. tested me for MAC. I am still awaiting the results. Honestly if i have it, i will be relieved in a crazy sort of way because i will finally know what is causing my fev1 decline and daily low grade fevers,night sweats,difficulty gaining my weight back, and increased need for iv's this past 8 - 9 months.
My Dr. did tell me if i have it, how they treat it. Taking long term oral antitbiotics will not be a problem at all since i am on 3 or 4.... 365 days a year. I just hope i dont need iv's long term, but if i do i will happily do them to treat the MAC and get it under control. Instead of looking at it as a grim diagnosis, be glad you finally have an answer to what has been going on with you. It is treatable, thats also gotta be of some comfort.Thank God it isnt something worse.
Honestly when i first read your post i was relieved to see you had something they could define. I know your slow progress was driving you crazy ( as mine is me). The good thing is you now know what is wrong, a good amount of people have it, and quite a few have gotten rid of it....who knows you may be one of them. Hang in there....

Diane · Nov 21, 2008

If it makes you feel any better i have a lot of the same symptoms as you and my Dr. tested me for MAC. I am still awaiting the results. Honestly if i have it, i will be relieved in a crazy sort of way because i will finally know what is causing my fev1 decline and daily low grade fevers,night sweats,difficulty gaining my weight back, and increased need for iv's this past 8 - 9 months.
My Dr. did tell me if i have it, how they treat it. Taking long term oral antitbiotics will not be a problem at all since i am on 3 or 4.... 365 days a year. I just hope i dont need iv's long term, but if i do i will happily do them to treat the MAC and get it under control. Instead of looking at it as a grim diagnosis, be glad you finally have an answer to what has been going on with you. It is treatable, thats also gotta be of some comfort.Thank God it isnt something worse.
Honestly when i first read your post i was relieved to see you had something they could define. I know your slow progress was driving you crazy ( as mine is me). The good thing is you now know what is wrong, a good amount of people have it, and quite a few have gotten rid of it....who knows you may be one of them. Hang in there....

Diane · Nov 21, 2008

If it makes you feel any better i have a lot of the same symptoms as you and my Dr. tested me for MAC. I am still awaiting the results. Honestly if i have it, i will be relieved in a crazy sort of way because i will finally know what is causing my fev1 decline and daily low grade fevers,night sweats,difficulty gaining my weight back, and increased need for iv's this past 8 - 9 months.
My Dr. did tell me if i have it, how they treat it. Taking long term oral antitbiotics will not be a problem at all since i am on 3 or 4.... 365 days a year. I just hope i dont need iv's long term, but if i do i will happily do them to treat the MAC and get it under control. Instead of looking at it as a grim diagnosis, be glad you finally have an answer to what has been going on with you. It is treatable, thats also gotta be of some comfort.Thank God it isnt something worse.
Honestly when i first read your post i was relieved to see you had something they could define. I know your slow progress was driving you crazy ( as mine is me). The good thing is you now know what is wrong, a good amount of people have it, and quite a few have gotten rid of it....who knows you may be one of them. Hang in there....

Diane · Nov 21, 2008

If it makes you feel any better i have a lot of the same symptoms as you and my Dr. tested me for MAC. I am still awaiting the results. Honestly if i have it, i will be relieved in a crazy sort of way because i will finally know what is causing my fev1 decline and daily low grade fevers,night sweats,difficulty gaining my weight back, and increased need for iv's this past 8 - 9 months.
My Dr. did tell me if i have it, how they treat it. Taking long term oral antitbiotics will not be a problem at all since i am on 3 or 4.... 365 days a year. I just hope i dont need iv's long term, but if i do i will happily do them to treat the MAC and get it under control. Instead of looking at it as a grim diagnosis, be glad you finally have an answer to what has been going on with you. It is treatable, thats also gotta be of some comfort.Thank God it isnt something worse.
Honestly when i first read your post i was relieved to see you had something they could define. I know your slow progress was driving you crazy ( as mine is me). The good thing is you now know what is wrong, a good amount of people have it, and quite a few have gotten rid of it....who knows you may be one of them. Hang in there....

Diane · Nov 21, 2008

If it makes you feel any better i have a lot of the same symptoms as you and my Dr. tested me for MAC. I am still awaiting the results. Honestly if i have it, i will be relieved in a crazy sort of way because i will finally know what is causing my fev1 decline and daily low grade fevers,night sweats,difficulty gaining my weight back, and increased need for iv's this past 8 - 9 months.
 My Dr. did tell me if i have it, how they treat it. Taking long term oral antitbiotics will not be a problem at all since i am on 3 or 4.... 365 days a year. I just hope i dont need iv's long term, but if i do i will happily do them to treat the MAC and get it under control. Instead of looking at it as a grim diagnosis, be glad you finally have an answer to what has been going on with you. It is treatable, thats also gotta be of some comfort.Thank God it isnt something worse.
 Honestly when i first read your post i was relieved to see you had something they could define. I know your slow progress was driving you crazy ( as mine is me). The good thing is you now know what is wrong, a good amount of people have it, and quite a few have gotten rid of it....who knows you may be one of them. Hang in there....

Nightwriter · Nov 21, 2008

Hi Sonia,

I've been laying low because I didn't think I had anything to add to what I had already written on your other related threads. Until today.

I had MAC twice. Once in 1987. I was pretty sick and nothing was helping. Once they discovered the MAC, I took two drugs for a year. I got better a very short time after I started the oral antibiotics Rifampin and Izonizid(sp) which was the protocol then( 12-18 months.)

Then I got it again around 1997. The protocol had changed to 4 drugs for 18 months. I had PA, Staph,--a garden growing. I treated everything BUT the MAC. The symptoms went away, so I decided not to treat the MAC. Well, then it disappeared too. Why? I don't know. Did the drugs I took for the PA and staff help a bit? Was it something else?

My point being -- whether you require drugs or no drugs -- it doesn't necessarily mean you have it forever.

It least you have more information on what is possibly making you feel so sick.

Nightwriter · Nov 21, 2008

Hi Sonia,

I've been laying low because I didn't think I had anything to add to what I had already written on your other related threads. Until today.

I had MAC twice. Once in 1987. I was pretty sick and nothing was helping. Once they discovered the MAC, I took two drugs for a year. I got better a very short time after I started the oral antibiotics Rifampin and Izonizid(sp) which was the protocol then( 12-18 months.)

Then I got it again around 1997. The protocol had changed to 4 drugs for 18 months. I had PA, Staph,--a garden growing. I treated everything BUT the MAC. The symptoms went away, so I decided not to treat the MAC. Well, then it disappeared too. Why? I don't know. Did the drugs I took for the PA and staff help a bit? Was it something else?

My point being -- whether you require drugs or no drugs -- it doesn't necessarily mean you have it forever.

It least you have more information on what is possibly making you feel so sick.

Nightwriter · Nov 21, 2008

Hi Sonia,

I've been laying low because I didn't think I had anything to add to what I had already written on your other related threads. Until today.

I had MAC twice. Once in 1987. I was pretty sick and nothing was helping. Once they discovered the MAC, I took two drugs for a year. I got better a very short time after I started the oral antibiotics Rifampin and Izonizid(sp) which was the protocol then( 12-18 months.)

Then I got it again around 1997. The protocol had changed to 4 drugs for 18 months. I had PA, Staph,--a garden growing. I treated everything BUT the MAC. The symptoms went away, so I decided not to treat the MAC. Well, then it disappeared too. Why? I don't know. Did the drugs I took for the PA and staff help a bit? Was it something else?

My point being -- whether you require drugs or no drugs -- it doesn't necessarily mean you have it forever.

It least you have more information on what is possibly making you feel so sick.

Nightwriter · Nov 21, 2008

Hi Sonia,

I've been laying low because I didn't think I had anything to add to what I had already written on your other related threads. Until today.

I had MAC twice. Once in 1987. I was pretty sick and nothing was helping. Once they discovered the MAC, I took two drugs for a year. I got better a very short time after I started the oral antibiotics Rifampin and Izonizid(sp) which was the protocol then( 12-18 months.)

Then I got it again around 1997. The protocol had changed to 4 drugs for 18 months. I had PA, Staph,--a garden growing. I treated everything BUT the MAC. The symptoms went away, so I decided not to treat the MAC. Well, then it disappeared too. Why? I don't know. Did the drugs I took for the PA and staff help a bit? Was it something else?

My point being -- whether you require drugs or no drugs -- it doesn't necessarily mean you have it forever.

It least you have more information on what is possibly making you feel so sick.

Nightwriter · Nov 21, 2008

Hi Sonia,
 
 I've been laying low because I didn't think I had anything to add to what I had already written on your other related threads. Until today.
 
 I had MAC twice. Once in 1987. I was pretty sick and nothing was helping. Once they discovered the MAC, I took two drugs for a year. I got better a very short time after I started the oral antibiotics Rifampin and Izonizid(sp) which was the protocol then( 12-18 months.)
 
 Then I got it again around 1997. The protocol had changed to 4 drugs for 18 months. I had PA, Staph,--a garden growing. I treated everything BUT the MAC. The symptoms went away, so I decided not to treat the MAC. Well, then it disappeared too. Why? I don't know. Did the drugs I took for the PA and staff help a bit? Was it something else?
 
 My point being -- whether you require drugs or no drugs -- it doesn't necessarily mean you have it forever.
 
 It least you have more information on what is possibly making you feel so sick.

When it rains it pours...

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