Need help with MAC(Mycobacterium avium complex)

C

cfkellygirl

New member
I looked back at old post to see if I could get my questions answered but none seemed to work.
Has anyone else gone through this??
Do you just feel like crap everyday and is it worth going thru the 18 months of treatment?
I have spent about the past year in and out of the hospital every month to every other month because I have just felt so sick that I knew I needed IV's, finally I cultured MAC. I have had it before but it didn't grow as fast as they would have liked to start treatment right away but now I am at that point where I'll do anything just to fix it because I hate being sick.
Other then the symptoms I found online ( fevers, chills, night sweats, fatigue) anyone else experience anything else?? I am always cold, seem to always have a fever, constantly tired and have aches and pains everywhere. My body feels like a 90 year old women and I feel like sleeping all day, which makes work and school very hard. My social life is non existant anymore because I always feel to sick to go out.
Anyone else experience things like this??
 
C

cfkellygirl

New member
I looked back at old post to see if I could get my questions answered but none seemed to work.
Has anyone else gone through this??
Do you just feel like crap everyday and is it worth going thru the 18 months of treatment?
I have spent about the past year in and out of the hospital every month to every other month because I have just felt so sick that I knew I needed IV's, finally I cultured MAC. I have had it before but it didn't grow as fast as they would have liked to start treatment right away but now I am at that point where I'll do anything just to fix it because I hate being sick.
Other then the symptoms I found online ( fevers, chills, night sweats, fatigue) anyone else experience anything else?? I am always cold, seem to always have a fever, constantly tired and have aches and pains everywhere. My body feels like a 90 year old women and I feel like sleeping all day, which makes work and school very hard. My social life is non existant anymore because I always feel to sick to go out.
Anyone else experience things like this??
 
C

caza

Guest
Yes i have had this - for quite few years and was treated for it in 2007 - had 10 days hospital where they started me off on a combination of meds - had iv of amikacin for week then the orals of moxifloxacin and rifampacin and these i took for nearly 3 years. I can sympathize with how you feel i felt so tired and ill - some fevers at nite but like you say i felt like a 90 year old woman and i too worked in a busy solicitors office. I kept growing the mac and for few years they didnt treat it - said my body was coping but i think i should have been treated earlier cos i developed a cavity in right upper lobe and had haemopsys and generally v unwell. I lost quite bit of weight - god knows how i managed to go to work. At first they thought i had TB but then when the culture is fully grown after 8 weeks it turned out to be mac. At first i did feel quite rough on the meds and didnt think i could cope with them but i just kept on and had the regular check ups at the hosp with the sputum and eventually it was clear - and i stayed on them til 2010 and did adjust to them. In fact i was scared to come off incase all that sputum came back. I used to cough so much but this all dried up. Now i am scared to say it but it seems clear - i know it can easily come back and i am on a maintenance course of meds for the winter of doxcycline - i have had infections since the staph aureus quite a bit. I would say that over all it has been worth it - but am scared almost to jinx it. I do feel heaps better than i did but of course with damaged lungs i am never gonna feel 100%. Good luck with your treatment.
 
C

caza

Guest
Yes i have had this - for quite few years and was treated for it in 2007 - had 10 days hospital where they started me off on a combination of meds - had iv of amikacin for week then the orals of moxifloxacin and rifampacin and these i took for nearly 3 years. I can sympathize with how you feel i felt so tired and ill - some fevers at nite but like you say i felt like a 90 year old woman and i too worked in a busy solicitors office. I kept growing the mac and for few years they didnt treat it - said my body was coping but i think i should have been treated earlier cos i developed a cavity in right upper lobe and had haemopsys and generally v unwell. I lost quite bit of weight - god knows how i managed to go to work. At first they thought i had TB but then when the culture is fully grown after 8 weeks it turned out to be mac. At first i did feel quite rough on the meds and didnt think i could cope with them but i just kept on and had the regular check ups at the hosp with the sputum and eventually it was clear - and i stayed on them til 2010 and did adjust to them. In fact i was scared to come off incase all that sputum came back. I used to cough so much but this all dried up. Now i am scared to say it but it seems clear - i know it can easily come back and i am on a maintenance course of meds for the winter of doxcycline - i have had infections since the staph aureus quite a bit. I would say that over all it has been worth it - but am scared almost to jinx it. I do feel heaps better than i did but of course with damaged lungs i am never gonna feel 100%. Good luck with your treatment.
 
C

Chels757

New member
I started culturing MAC about 2 years ago. After a year of rifampin, biaxin and ethambutol I no longer cultured it. I started getting low grade fevers almost everyday for now 8 months that still doctors have no idea why. I had a bronch done back in October and it showed it was culturing MAC again. They think I never stopped growing it, I just wasn't getting a deep enough sputum sample for them to use. They don't think the fevers are from the MAC but maybe something else going on with my lungs. What I can tell you is I've never felt more sick in my life. I'm constantly tired. I sleep 12-15 hours a day. I'm always cold. I have horrible night sweats to the point I wake up at and have to change my shirt from so much sweat. I've been in the hospital close to 10 times this year because of the fevers and overall just feeling crummy all the time. I have my good days and my bad days. I used to work about 30 hours a week and now I only work about 15. MAC has definitely taken a toll on me. I barely go out with friends anymore because I'm always tired. I wish there was something I could tell you to help. My doctor wants me to start exercising in hopes that it will give me some energy. Hope treatment helps you and gets rid of it quick.
 
C

Chels757

New member
I started culturing MAC about 2 years ago. After a year of rifampin, biaxin and ethambutol I no longer cultured it. I started getting low grade fevers almost everyday for now 8 months that still doctors have no idea why. I had a bronch done back in October and it showed it was culturing MAC again. They think I never stopped growing it, I just wasn't getting a deep enough sputum sample for them to use. They don't think the fevers are from the MAC but maybe something else going on with my lungs. What I can tell you is I've never felt more sick in my life. I'm constantly tired. I sleep 12-15 hours a day. I'm always cold. I have horrible night sweats to the point I wake up at and have to change my shirt from so much sweat. I've been in the hospital close to 10 times this year because of the fevers and overall just feeling crummy all the time. I have my good days and my bad days. I used to work about 30 hours a week and now I only work about 15. MAC has definitely taken a toll on me. I barely go out with friends anymore because I'm always tired. I wish there was something I could tell you to help. My doctor wants me to start exercising in hopes that it will give me some energy. Hope treatment helps you and gets rid of it quick.
 
B

beleache

New member
ma

Hi Kelly,
I have cultured Mycobacterium abcessus for over 3 yrs now, & have been on treatment for it for about 3 yrs. My drs. didn't treat me right off because the treatment is harsh, as they say, When my lung developed a cavity the drs. decided it was time.
My CF center is in N.Y.C. @ Beth Israel , but I go to Denver National Health in Colorado for the Myco.
We started off w/ 7mos of IV abx , oral Biaxin & inhaled Amikasin. I am still using the oral & inhaled meds & my drs said this will prob be my routine indefinitely..
The one thing I notice most of all is no more night sweats ! Although, there were times I thought it may have been menopause for me lol ..
The only thing I would say is that if you are so miserable now maybe the treatment for it may help you !
I was very scared when first dx'd w/ it & spoke to ppl on these boards that put my mind at ease a bit.. I thank God for this site & for the ppl that helped calm my fears..
If you have any questions, or just want to talk please pm me ..
Take care <3 joni
 
B

beleache

New member
ma

Hi Kelly,
I have cultured Mycobacterium abcessus for over 3 yrs now, & have been on treatment for it for about 3 yrs. My drs. didn't treat me right off because the treatment is harsh, as they say, When my lung developed a cavity the drs. decided it was time.
My CF center is in N.Y.C. @ Beth Israel , but I go to Denver National Health in Colorado for the Myco.
We started off w/ 7mos of IV abx , oral Biaxin & inhaled Amikasin. I am still using the oral & inhaled meds & my drs said this will prob be my routine indefinitely..
The one thing I notice most of all is no more night sweats ! Although, there were times I thought it may have been menopause for me lol ..
The only thing I would say is that if you are so miserable now maybe the treatment for it may help you !
I was very scared when first dx'd w/ it & spoke to ppl on these boards that put my mind at ease a bit.. I thank God for this site & for the ppl that helped calm my fears..
If you have any questions, or just want to talk please pm me ..
Take care <3 joni
 
W

windex125

Guest
I have dealth with Mac for more than 10yrs now, I was treated for it in the beg. but then we backed off as the cocktail of drugs were extremely strong and making my numbers on my liver and kidneys go out of wack but I think I did the cocktail for abt 8mts. I kinda forget. Over the years I've done many IV treatments I had a port put in 10yrs ago best thing I ever did but it scared the hell out of me in the beg. I have alot of the same symptoms you have the constant feeling of feeling tired, not wanting to get out of bed. Sweats occassionally. and depression as well. I try my best to still have a postive attitude and deal with my issues day to day, what more can we do? It's the deck of cards we were dealt. I know this is not much information medical wise, sorry but once you get MAC it just will always be there. It will flare up and down just try to control it with yr doctor advice on meds as you wld any other flare up. Try to push yourself to get out of bed even if you only walk around the house a few times. Always think to yourself will get better, it's a infection and we fight all our infections. It's another hurdle to get across. Pat-57/CF - and alot of other suff too....
 
W

windex125

Guest
I have dealth with Mac for more than 10yrs now, I was treated for it in the beg. but then we backed off as the cocktail of drugs were extremely strong and making my numbers on my liver and kidneys go out of wack but I think I did the cocktail for abt 8mts. I kinda forget. Over the years I've done many IV treatments I had a port put in 10yrs ago best thing I ever did but it scared the hell out of me in the beg. I have alot of the same symptoms you have the constant feeling of feeling tired, not wanting to get out of bed. Sweats occassionally. and depression as well. I try my best to still have a postive attitude and deal with my issues day to day, what more can we do? It's the deck of cards we were dealt. I know this is not much information medical wise, sorry but once you get MAC it just will always be there. It will flare up and down just try to control it with yr doctor advice on meds as you wld any other flare up. Try to push yourself to get out of bed even if you only walk around the house a few times. Always think to yourself will get better, it's a infection and we fight all our infections. It's another hurdle to get across. Pat-57/CF - and alot of other suff too....
 
B

bea50

Guest
You are definitely not alone. I was recently told that I am culturing MAC as well and the symptoms you described in your original post are exactly how I feel. I haven't started treatment yet but will be starting soon and I am very nervous about starting the treatment. I don't know how you are managing work and school, I applied for disability last year and was approved. I could not hold down any kind of employment with the way i feel right now. Wishing you the best! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
B

bea50

Guest
You are definitely not alone. I was recently told that I am culturing MAC as well and the symptoms you described in your original post are exactly how I feel. I haven't started treatment yet but will be starting soon and I am very nervous about starting the treatment. I don't know how you are managing work and school, I applied for disability last year and was approved. I could not hold down any kind of employment with the way i feel right now. Wishing you the best! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

theLostMiler

New member
I culture another strain of NTM, and yes, daily fevers, sweats, chills, no enemrgy, no appetite, naussa... The list goes on and on. You aren't alone, do the treatment, it will provide relief. I didnt clear it with my first round of "long term treatment" but I have done other 3-6 month treatments and they make me feel alive again, so very much worth it.
 
T

theLostMiler

New member
I culture another strain of NTM, and yes, daily fevers, sweats, chills, no enemrgy, no appetite, naussa... The list goes on and on. You aren't alone, do the treatment, it will provide relief. I didnt clear it with my first round of "long term treatment" but I have done other 3-6 month treatments and they make me feel alive again, so very much worth it.
 
S

semnle34

New member
Oh good old NTM.....I have been fighting this freaking bacteria for several years now. I started out on oral meds (ethambutol, clarithromycin and rifampin). Despite all those meds I still felt tired, had cold sweats and fevers. Just recently the symptoms got worse so my doctor decided to take more of an aggressive approach by a six week course of IV meds. I'm off the IV meds now and back on Avelox and Biaxin daily. Unfortunately its an aggressive bacteria. Some people are lucky and get rid of it and others like myself have to continue fighting it. I suggest whatever meds the doctor prescribes make sure you take. My PFT's have been dropping since I cultured the bacteria.
 
S

semnle34

New member
Oh good old NTM.....I have been fighting this freaking bacteria for several years now. I started out on oral meds (ethambutol, clarithromycin and rifampin). Despite all those meds I still felt tired, had cold sweats and fevers. Just recently the symptoms got worse so my doctor decided to take more of an aggressive approach by a six week course of IV meds. I'm off the IV meds now and back on Avelox and Biaxin daily. Unfortunately its an aggressive bacteria. Some people are lucky and get rid of it and others like myself have to continue fighting it. I suggest whatever meds the doctor prescribes make sure you take. My PFT's have been dropping since I cultured the bacteria.
 
You must log in or register to reply here.
Top