MAC, or something....

[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.
<br />
<br />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.
<br />
<br />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.
<br />
<br />Good luck!

 

[CAandCFnewbie]

I haves had 2 long courses of 3 MAC drugs. I probably had it for years prior to my 1st treatment, I was seeing a "lung specialist" and only after my brother in MN had a massive bleed and NO OTHER SYMPTOMS was dx for MAC that I bullied, questioned, begged for some definitive dx of symptoms of no energy, night/some daytime fevers, coughing all the time, lost my voice at times, not hungry but could eat anything/everything and still lost 25lbs (138=145 normal at age 45 in 05. I was in MO and mythe newcomers wine tasting women all wanted to know How? and after my CF dx I told them about the TB diet...HA! MAC is classified as "atypical" and related to the TB bug. There is a website and org just for MAC I think in TX. You can be really sick with MAC without CF, usually bronchiectasis sets you up for this.

I have little time to respond now,,, but can warn that all the antibiotics increase the likelihood of fungus later. I developed asthma last June. The asthma med Symbiocort actually increases fungal growth...their oops... I was on it 10 months. My Dr.s forgot to mention that I shouldn't take my prescribed ProAir/Albuterol at the same time (before my vest) so I ended up in ER with what felt like a harrt attack .I ALWAYS grow 1 or 2 kinds of fungus in every sputum culture. I have "mild" cf but I can't go outside without a mask if the air quality index is 100+, can't swim in my pool(chlorine) I've taken Albuteral 2puffs/2x day, VEST2x day, some hypertonic saline, Dnase for 2+ years, enzymes since 2008 and having lots of issues with blood sugar (mostly low, some borderline high) I cultured Pseudomonas aeruginosa in June, now doing my last week of 3 of Ciproquinoline sp? 750mg 2x/day and my inhaled Colistimethate 2x/day 3 wks+. I've taken Colis 28on/28off 2x/day since 2007 after I grew -P. aeruginosa after iv Tobi and ?? then had 2 months neb'd Tobi but switched to Colis due to ototoxicity/hearing loss (I had hearing loss prior to iv but lost more)
In April a newly grown fungus Scedosporium apiospermum along with(for me) a higher IgG, continued weight loss and still lots of coughing blood ( spots to 2-3 Tablespoons to 1/3-1/2 cup). I hadn't cultured MAC since 08 but I it was NEVER in my sputum when I was so sick in 05 before the cf dx. I finished 4 months of Rifampin, Ethambutal, Azithromycin (in May) the last drug replaced Clarithromycin which might have taxed my liver more since I take Ibuprofen for mucus plugs and sciatica (leg pain due to pinched nerve in my back) I was a bit better but still blood/low wt. In bed as I type coughing blood, low/high blood sugar, clammy sweaty,weak, feel like I have a fever. Multilple meds and conditions are tricky, Do some research about the MAC.
I know this reads like a crabby ladies list of complaints, to me it's just facts. AND I am doing AMAZING because I have ad an answer to my prayers. I have a 13 year old daughter going thru shedding old toxic friends ie mean girls, my husband has never coped well with all the changes/demands of cf but I've got my angels/new friends giving me support and Gods so close I hear Him....He's whispering I better get to my appointment! I'll get back to you this post later! By the way I have ADD too hope I'm coherent in this post, if not questions are happily answered!
Later Linda

 

[CAandCFnewbie]

I haves had 2 long courses of 3 MAC drugs. I probably had it for years prior to my 1st treatment, I was seeing a "lung specialist" and only after my brother in MN had a massive bleed and NO OTHER SYMPTOMS was dx for MAC that I bullied, questioned, begged for some definitive dx of symptoms of no energy, night/some daytime fevers, coughing all the time, lost my voice at times, not hungry but could eat anything/everything and still lost 25lbs (138=145 normal at age 45 in 05. I was in MO and mythe newcomers wine tasting women all wanted to know How? and after my CF dx I told them about the TB diet...HA! MAC is classified as "atypical" and related to the TB bug. There is a website and org just for MAC I think in TX. You can be really sick with MAC without CF, usually bronchiectasis sets you up for this.

I have little time to respond now,,, but can warn that all the antibiotics increase the likelihood of fungus later. I developed asthma last June. The asthma med Symbiocort actually increases fungal growth...their oops... I was on it 10 months. My Dr.s forgot to mention that I shouldn't take my prescribed ProAir/Albuterol at the same time (before my vest) so I ended up in ER with what felt like a harrt attack .I ALWAYS grow 1 or 2 kinds of fungus in every sputum culture. I have "mild" cf but I can't go outside without a mask if the air quality index is 100+, can't swim in my pool(chlorine) I've taken Albuteral 2puffs/2x day, VEST2x day, some hypertonic saline, Dnase for 2+ years, enzymes since 2008 and having lots of issues with blood sugar (mostly low, some borderline high) I cultured Pseudomonas aeruginosa in June, now doing my last week of 3 of Ciproquinoline sp? 750mg 2x/day and my inhaled Colistimethate 2x/day 3 wks+. I've taken Colis 28on/28off 2x/day since 2007 after I grew -P. aeruginosa after iv Tobi and ?? then had 2 months neb'd Tobi but switched to Colis due to ototoxicity/hearing loss (I had hearing loss prior to iv but lost more)
In April a newly grown fungus Scedosporium apiospermum along with(for me) a higher IgG, continued weight loss and still lots of coughing blood ( spots to 2-3 Tablespoons to 1/3-1/2 cup). I hadn't cultured MAC since 08 but I it was NEVER in my sputum when I was so sick in 05 before the cf dx. I finished 4 months of Rifampin, Ethambutal, Azithromycin (in May) the last drug replaced Clarithromycin which might have taxed my liver more since I take Ibuprofen for mucus plugs and sciatica (leg pain due to pinched nerve in my back) I was a bit better but still blood/low wt. In bed as I type coughing blood, low/high blood sugar, clammy sweaty,weak, feel like I have a fever. Multilple meds and conditions are tricky, Do some research about the MAC.
I know this reads like a crabby ladies list of complaints, to me it's just facts. AND I am doing AMAZING because I have ad an answer to my prayers. I have a 13 year old daughter going thru shedding old toxic friends ie mean girls, my husband has never coped well with all the changes/demands of cf but I've got my angels/new friends giving me support and Gods so close I hear Him....He's whispering I better get to my appointment! I'll get back to you this post later! By the way I have ADD too hope I'm coherent in this post, if not questions are happily answered!
Later Linda

 

[CAandCFnewbie]

I haves had 2 long courses of 3 MAC drugs. I probably had it for years prior to my 1st treatment, I was seeing a "lung specialist" and only after my brother in MN had a massive bleed and NO OTHER SYMPTOMS was dx for MAC that I bullied, questioned, begged for some definitive dx of symptoms of no energy, night/some daytime fevers, coughing all the time, lost my voice at times, not hungry but could eat anything/everything and still lost 25lbs (138=145 normal at age 45 in 05. I was in MO and mythe newcomers wine tasting women all wanted to know How? and after my CF dx I told them about the TB diet...HA! MAC is classified as "atypical" and related to the TB bug. There is a website and org just for MAC I think in TX. You can be really sick with MAC without CF, usually bronchiectasis sets you up for this.
<br />
<br /> I have little time to respond now,,, but can warn that all the antibiotics increase the likelihood of fungus later. I developed asthma last June. The asthma med Symbiocort actually increases fungal growth...their oops... I was on it 10 months. My Dr.s forgot to mention that I shouldn't take my prescribed ProAir/Albuterol at the same time (before my vest) so I ended up in ER with what felt like a harrt attack .I ALWAYS grow 1 or 2 kinds of fungus in every sputum culture. I have "mild" cf but I can't go outside without a mask if the air quality index is 100+, can't swim in my pool(chlorine) I've taken Albuteral 2puffs/2x day, VEST2x day, some hypertonic saline, Dnase for 2+ years, enzymes since 2008 and having lots of issues with blood sugar (mostly low, some borderline high) I cultured Pseudomonas aeruginosa in June, now doing my last week of 3 of Ciproquinoline sp? 750mg 2x/day and my inhaled Colistimethate 2x/day 3 wks+. I've taken Colis 28on/28off 2x/day since 2007 after I grew -P. aeruginosa after iv Tobi and ?? then had 2 months neb'd Tobi but switched to Colis due to ototoxicity/hearing loss (I had hearing loss prior to iv but lost more)
<br /> In April a newly grown fungus Scedosporium apiospermum along with(for me) a higher IgG, continued weight loss and still lots of coughing blood ( spots to 2-3 Tablespoons to 1/3-1/2 cup). I hadn't cultured MAC since 08 but I it was NEVER in my sputum when I was so sick in 05 before the cf dx. I finished 4 months of Rifampin, Ethambutal, Azithromycin (in May) the last drug replaced Clarithromycin which might have taxed my liver more since I take Ibuprofen for mucus plugs and sciatica (leg pain due to pinched nerve in my back) I was a bit better but still blood/low wt. In bed as I type coughing blood, low/high blood sugar, clammy sweaty,weak, feel like I have a fever. Multilple meds and conditions are tricky, Do some research about the MAC.
<br />I know this reads like a crabby ladies list of complaints, to me it's just facts. AND I am doing AMAZING because I have ad an answer to my prayers. I have a 13 year old daughter going thru shedding old toxic friends ie mean girls, my husband has never coped well with all the changes/demands of cf but I've got my angels/new friends giving me support and Gods so close I hear Him....He's whispering I better get to my appointment! I'll get back to you this post later! By the way I have ADD too hope I'm coherent in this post, if not questions are happily answered!
<br />Later Linda

 

[JennifersHope]

I do not have a definitive underlying diagnoses at this point anymore, but it was found about four months ago that I am culturing MAC and also another form of Mycobacteria, I have on and off cultured MRSA and PA but not recently.

I am not a complainer or some one who is quick to run to the doctor but it will be a year on Thanksgiving when I ended up on life support.. I never recovered even half of where I was. I complained of night sweats, low grade fevers, throat spasms..(now known because I was hypoxic) day sweats and feeling like I could not get out of bed.

Finally a local doctor did a sputum test on me as well as an six minute walk test... My oxygen saturation was low and I have consistently cultured the two forms of Mycobacteria, I have had Catscan changes that show more bronchiatecisis.

It took a few months for the reports to come back but three weeks ago I started treatment for the MAC ... I am doing IV and oral.. The treatment is hard for me to take... I was also nauseous before starting treatment but now since starting treatment I am on IV Zofran to try to stop me from throwing up.. I am also on IV fluids daily to keep myself hydrated.

I have addison's disease as well and when you throw up that sends me into crisis so I have been on IV steroids which are very bad for MAC but I needed it, that IV steroids made me feel great but alas I could not stay on them and I am back to puking, feeling weak and tired, I was told to expect to feel this way for a while since it took so long for me to get this way, it will take me a while to get back to a decent base level.

So far, the night sweats have started to subside a little bit... but with out the steroids I feel yucky.... I don't know when you should start treatment but I sure wish they would have caught this on me sooner....since I was so so sick for so long..

If I didn't have bad symptoms I would not be doign the treatment because it makes me feel aweful..

 

[JennifersHope]

I do not have a definitive underlying diagnoses at this point anymore, but it was found about four months ago that I am culturing MAC and also another form of Mycobacteria, I have on and off cultured MRSA and PA but not recently.

I am not a complainer or some one who is quick to run to the doctor but it will be a year on Thanksgiving when I ended up on life support.. I never recovered even half of where I was. I complained of night sweats, low grade fevers, throat spasms..(now known because I was hypoxic) day sweats and feeling like I could not get out of bed.

Finally a local doctor did a sputum test on me as well as an six minute walk test... My oxygen saturation was low and I have consistently cultured the two forms of Mycobacteria, I have had Catscan changes that show more bronchiatecisis.

It took a few months for the reports to come back but three weeks ago I started treatment for the MAC ... I am doing IV and oral.. The treatment is hard for me to take... I was also nauseous before starting treatment but now since starting treatment I am on IV Zofran to try to stop me from throwing up.. I am also on IV fluids daily to keep myself hydrated.

I have addison's disease as well and when you throw up that sends me into crisis so I have been on IV steroids which are very bad for MAC but I needed it, that IV steroids made me feel great but alas I could not stay on them and I am back to puking, feeling weak and tired, I was told to expect to feel this way for a while since it took so long for me to get this way, it will take me a while to get back to a decent base level.

So far, the night sweats have started to subside a little bit... but with out the steroids I feel yucky.... I don't know when you should start treatment but I sure wish they would have caught this on me sooner....since I was so so sick for so long..

If I didn't have bad symptoms I would not be doign the treatment because it makes me feel aweful..

 

[JennifersHope]

I do not have a definitive underlying diagnoses at this point anymore, but it was found about four months ago that I am culturing MAC and also another form of Mycobacteria, I have on and off cultured MRSA and PA but not recently.
<br />
<br />I am not a complainer or some one who is quick to run to the doctor but it will be a year on Thanksgiving when I ended up on life support.. I never recovered even half of where I was. I complained of night sweats, low grade fevers, throat spasms..(now known because I was hypoxic) day sweats and feeling like I could not get out of bed.
<br />
<br />Finally a local doctor did a sputum test on me as well as an six minute walk test... My oxygen saturation was low and I have consistently cultured the two forms of Mycobacteria, I have had Catscan changes that show more bronchiatecisis.
<br />
<br />It took a few months for the reports to come back but three weeks ago I started treatment for the MAC ... I am doing IV and oral.. The treatment is hard for me to take... I was also nauseous before starting treatment but now since starting treatment I am on IV Zofran to try to stop me from throwing up.. I am also on IV fluids daily to keep myself hydrated.
<br />
<br />I have addison's disease as well and when you throw up that sends me into crisis so I have been on IV steroids which are very bad for MAC but I needed it, that IV steroids made me feel great but alas I could not stay on them and I am back to puking, feeling weak and tired, I was told to expect to feel this way for a while since it took so long for me to get this way, it will take me a while to get back to a decent base level.
<br />
<br />So far, the night sweats have started to subside a little bit... but with out the steroids I feel yucky.... I don't know when you should start treatment but I sure wish they would have caught this on me sooner....since I was so so sick for so long..
<br />
<br />If I didn't have bad symptoms I would not be doign the treatment because it makes me feel aweful..

 

[Ldude916]

Alright so I asked my doctor again, what he would do if i started to culture MAC again. He said "If you culture MAC again I would send it the lab in Colorado for sensitivity testing. If it was still sensitive to zithromax I would still use it."....this was via email.

 

[Ldude916]

Alright so I asked my doctor again, what he would do if i started to culture MAC again. He said "If you culture MAC again I would send it the lab in Colorado for sensitivity testing. If it was still sensitive to zithromax I would still use it."....this was via email.

 

[Ldude916]

Alright so I asked my doctor again, what he would do if i started to culture MAC again. He said "If you culture MAC again I would send it the lab in Colorado for sensitivity testing. If it was still sensitive to zithromax I would still use it."....this was via email.