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~
<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~