mycobacterium avium complex

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windex125

Guest
Bookworm that was a excellent response OMG great... I started culturing MAC in the late 90's I did get treated with the cocktail of 3 meds for abt 8mts. But these were very sensative to the liver and kidneys and had to have mtly blood work as well. After that we did not specifically treat just for MAC I also heard abt Denver but choose not to make the trip from NY I read alot on line abt it some was very scarry, and I did some research as well and when I found out it was from dirt and water I thought ok so now what? I always had a garden flowers and veg. every year, never thought that cld be a issue, so gave that up quick. Also our water here on Long Is. in NY is considered what they call hard water alot of minerals I spray bleach into the shower head where ever I remember to do it,not sure that helps but always run it a few mins before and keep the window open in the BR. Whenever I did have to do IV's we always used a different meds, but the MAC has become resistant to all but I still do well with Zithro and Bactrim when I'm really sick and that has not been for some time. Once you culture it I think you always will? I also go by the way I feel day to day week to week, rather than what I just cultured. I am on Bactrim 365 days a year. Just finsihed 2nd round of Cayston as well. So Tamara don't be to worried that will make you sick as well, and I agreee that probably 50% of CF people do curture MAC good luck Take Care/Be Well - Pat 56/CF
 
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bookworm

Guest
Good to see that you are getting some responses here from others. I'm sure a lot of people have a lot to contribute on this topic. I forgot to mention an important symptom - increased cough.<br>
<br>In terms of water and showerheads, I've been spending more time than I'd like to admit trying to figure out how I can improve water quality if necessary. I've read quite a few studies on mycobacterium and it is a very wily bug to kill off. Apparently chlorine doesn't do it and it is really attracted to growing in plastic. It grows in the resin in water softeners and UV treatment damages the mycobacterium (gives it lesions) - but it apparently recovers after some time. If you have water filters, it's possible the mycobacterium may multiply there, so it's a tough call - about whether you're improving things or making them worse.
<br>
<br>One thing that I did read was that you should use a metal showerhead if possible and clean it with a stiff brush monthly. My current solution is just to buy cheap showerheads and replace often, because I'm not sure what I can clean with that will get everything. The NTM info site likely has more information about the study with the showerheads. I've done a lot of research on google scholar for mycobacterium avium and water articles.
 
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bookworm

Guest
Good to see that you are getting some responses here from others. I'm sure a lot of people have a lot to contribute on this topic. I forgot to mention an important symptom - increased cough.<br>
<br>In terms of water and showerheads, I've been spending more time than I'd like to admit trying to figure out how I can improve water quality if necessary. I've read quite a few studies on mycobacterium and it is a very wily bug to kill off. Apparently chlorine doesn't do it and it is really attracted to growing in plastic. It grows in the resin in water softeners and UV treatment damages the mycobacterium (gives it lesions) - but it apparently recovers after some time. If you have water filters, it's possible the mycobacterium may multiply there, so it's a tough call - about whether you're improving things or making them worse.
<br>
<br>One thing that I did read was that you should use a metal showerhead if possible and clean it with a stiff brush monthly. My current solution is just to buy cheap showerheads and replace often, because I'm not sure what I can clean with that will get everything. The NTM info site likely has more information about the study with the showerheads. I've done a lot of research on google scholar for mycobacterium avium and water articles.
 
B

bookworm

Guest
Good to see that you are getting some responses here from others. I'm sure a lot of people have a lot to contribute on this topic. I forgot to mention an important symptom - increased cough.<br>
<br>In terms of water and showerheads, I've been spending more time than I'd like to admit trying to figure out how I can improve water quality if necessary. I've read quite a few studies on mycobacterium and it is a very wily bug to kill off. Apparently chlorine doesn't do it and it is really attracted to growing in plastic. It grows in the resin in water softeners and UV treatment damages the mycobacterium (gives it lesions) - but it apparently recovers after some time. If you have water filters, it's possible the mycobacterium may multiply there, so it's a tough call - about whether you're improving things or making them worse.
<br>
<br>One thing that I did read was that you should use a metal showerhead if possible and clean it with a stiff brush monthly. My current solution is just to buy cheap showerheads and replace often, because I'm not sure what I can clean with that will get everything. The NTM info site likely has more information about the study with the showerheads. I've done a lot of research on google scholar for mycobacterium avium and water articles.
 
B

bookworm

Guest
Good to see that you are getting some responses here from others. I'm sure a lot of people have a lot to contribute on this topic.

In terms of water and showerheads, I've been spending more time than I'd like to admit trying to figure out how I can improve water quality if necessary. I've read quite a few studies on mycobacterium and it is a very wily bug to kill off. Apparently chlorine doesn't do it and it is really attracted to growing in plastic. It grows in the resin in water softeners and UV treatment damages the mycobacterium (gives it lesions) - but it apparently recovers after some time. If you have water filters, it's possible the mycobacterium may multiply there, so it's a tough call - about whether you're improving things or making them worse.

One thing that I did read was that you should use a metal showerhead if possible and clean it with a stiff brush monthly. My current solution is just to buy cheap showerheads and replace often, because I'm not sure what I can clean with that will get everything. The NTM info site likely has more information about the study with the showerheads. I've done a lot of research on google scholar for mycobacterium avium and water articles.
 
B

bookworm

Guest
Good to see that you are getting some responses here from others. I'm sure a lot of people have a lot to contribute on this topic.

In terms of water and showerheads, I've been spending more time than I'd like to admit trying to figure out how I can improve water quality if necessary. I've read quite a few studies on mycobacterium and it is a very wily bug to kill off. Apparently chlorine doesn't do it and it is really attracted to growing in plastic. It grows in the resin in water softeners and UV treatment damages the mycobacterium (gives it lesions) - but it apparently recovers after some time. If you have water filters, it's possible the mycobacterium may multiply there, so it's a tough call - about whether you're improving things or making them worse.

One thing that I did read was that you should use a metal showerhead if possible and clean it with a stiff brush monthly. My current solution is just to buy cheap showerheads and replace often, because I'm not sure what I can clean with that will get everything. The NTM info site likely has more information about the study with the showerheads. I've done a lot of research on google scholar for mycobacterium avium and water articles.
 
B

bookworm

Guest
Good to see that you are getting some responses here from others. I'm sure a lot of people have a lot to contribute on this topic.
<br />
<br />In terms of water and showerheads, I've been spending more time than I'd like to admit trying to figure out how I can improve water quality if necessary. I've read quite a few studies on mycobacterium and it is a very wily bug to kill off. Apparently chlorine doesn't do it and it is really attracted to growing in plastic. It grows in the resin in water softeners and UV treatment damages the mycobacterium (gives it lesions) - but it apparently recovers after some time. If you have water filters, it's possible the mycobacterium may multiply there, so it's a tough call - about whether you're improving things or making them worse.
<br />
<br />One thing that I did read was that you should use a metal showerhead if possible and clean it with a stiff brush monthly. My current solution is just to buy cheap showerheads and replace often, because I'm not sure what I can clean with that will get everything. The NTM info site likely has more information about the study with the showerheads. I've done a lot of research on google scholar for mycobacterium avium and water articles.
 
K

krisjohn53223

New member
I cultured MAC about 4 years ago or so. From what I understand, it is always in my lungs, but not always active. When it does "act up", I get really wheezing, short of breath, tired, increased AiG levels (blood test which measures allergies) and increase cough. My doctor explained it as my body is allergic to it and responds with those symptoms. From what I understand, the treatment is 18 months of 3 antibiotics (orally). 2 of the 3 I can not tolerate, so we have been holding off as long as possible before attempting to start them. So far I have been ok. She said as long as it is not "active" it is ok. It did act up pretty bad last summer so she did 4 months of high dose prednisone to tame it. That seemed to help but not cure it.

She also orders CT of my lungs at least once a year because she said MAC can "eat away" at the lungs. I do have a few small "holes" or cavities in my lungs but she's keeping an eye on them. I do have pain when it flares up too.
 
K

krisjohn53223

New member
I cultured MAC about 4 years ago or so. From what I understand, it is always in my lungs, but not always active. When it does "act up", I get really wheezing, short of breath, tired, increased AiG levels (blood test which measures allergies) and increase cough. My doctor explained it as my body is allergic to it and responds with those symptoms. From what I understand, the treatment is 18 months of 3 antibiotics (orally). 2 of the 3 I can not tolerate, so we have been holding off as long as possible before attempting to start them. So far I have been ok. She said as long as it is not "active" it is ok. It did act up pretty bad last summer so she did 4 months of high dose prednisone to tame it. That seemed to help but not cure it.

She also orders CT of my lungs at least once a year because she said MAC can "eat away" at the lungs. I do have a few small "holes" or cavities in my lungs but she's keeping an eye on them. I do have pain when it flares up too.
 
K

krisjohn53223

New member
I cultured MAC about 4 years ago or so. From what I understand, it is always in my lungs, but not always active. When it does "act up", I get really wheezing, short of breath, tired, increased AiG levels (blood test which measures allergies) and increase cough. My doctor explained it as my body is allergic to it and responds with those symptoms. From what I understand, the treatment is 18 months of 3 antibiotics (orally). 2 of the 3 I can not tolerate, so we have been holding off as long as possible before attempting to start them. So far I have been ok. She said as long as it is not "active" it is ok. It did act up pretty bad last summer so she did 4 months of high dose prednisone to tame it. That seemed to help but not cure it.
<br />
<br />She also orders CT of my lungs at least once a year because she said MAC can "eat away" at the lungs. I do have a few small "holes" or cavities in my lungs but she's keeping an eye on them. I do have pain when it flares up too.
 
F

franzie2984

Member
Hi,<br>
<br>
Funny you should ask: I just started treatment for MAC, again, about 3
weeks ago.   I actually posted on here about MAC, but did not get as
many replies as you have.    Culturing mycobacterium avium one time is
not a good way to diagnose MAC.  As some people have replied to you, it
is everywhere in the environment and not everything we happen to culture
is actually an infection.  I don't know if you posted prior to this
about health problems, but your symptoms would be a greater indicator of
need to treat than your culture (in my personal opinion and
experience).   Typical diagnosis involves a CT scan of lungs and at
least 2 positive cultures, as well as symptoms of the infection.  For people with CF, at least, one needs to consider the benefits of treatment versus not treating....<br>
<br>
In my case I started treating before, couldn't handle the drugs, stopped
after 6 months, and gradually started feeling like crap again.  Now I
am doing 3x weekly (Did daily before) rifampin, enthambutol, and
azithromycin (sub for clarithro).    Rifampin is typically the drug that is extremely hard for people to tolerate.  I believe there are alternatives,
which I will seek if I can't handle these, but if you end up pursuing
treatment, you should definitely look at all the options and take into
account how you feel if you do take these medications.<br><br>The first time before I treated I had night sweats, felt like crap, and actually coughed up blood twice (never had done that before, never since).   This time I also had general feeling of crappiness, gradual weight loss of about 10-15lbs over a period of 1.5 years (this was over the entire period of MAC not just the second time and I was already thin), and a lung function decline of 16% in one year (102%-86%).    Throughout all of this I have had a terrible nagging cough that is barely tolerable.  Typically it is initially hard to tell if the symptoms are this or other things since feeling like crap and coughing could be many other things. <br>
<br>
Notably I have CFRD as you do, and typically high lung function.  I have
heard that (not sure if there is ANY truth to this) people with CF with
higher lung functioning seem to get this more than those with
lower......  If you do end up treating and want to talk, let me know.  <br>
<br>
<br>
Sarah~
 
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