Those who have done tratment for MAC or NTM

J

JennifersHope

New member
I am as you know culturing MAC and Mycobacteria fortuitum. I don't know how long I have been culturing it we found it a few months ago... but we had to do three other cultures and then wait for the results and sensitivities to come back....


Anyway, I started my cocktail of meds on Friday, some IV some oral... How long until I start to feel better??? I have night sweats, occasional fevers, and severe lethargy. I swear I almost asked them to test me for Mono, I am so wiped out. I was told that is part of what the NTM can do.

I Know it is a long time for the treatment as the plan is for me to stay on this "indefinitely" I would however love to have an idea when I can expect the night sweats and lethargy to go away or subside a little.

THanks so much!!!
 
J

JennifersHope

New member
I am as you know culturing MAC and Mycobacteria fortuitum. I don't know how long I have been culturing it we found it a few months ago... but we had to do three other cultures and then wait for the results and sensitivities to come back....


Anyway, I started my cocktail of meds on Friday, some IV some oral... How long until I start to feel better??? I have night sweats, occasional fevers, and severe lethargy. I swear I almost asked them to test me for Mono, I am so wiped out. I was told that is part of what the NTM can do.

I Know it is a long time for the treatment as the plan is for me to stay on this "indefinitely" I would however love to have an idea when I can expect the night sweats and lethargy to go away or subside a little.

THanks so much!!!
 
J

JennifersHope

New member
I am as you know culturing MAC and Mycobacteria fortuitum. I don't know how long I have been culturing it we found it a few months ago... but we had to do three other cultures and then wait for the results and sensitivities to come back....


Anyway, I started my cocktail of meds on Friday, some IV some oral... How long until I start to feel better??? I have night sweats, occasional fevers, and severe lethargy. I swear I almost asked them to test me for Mono, I am so wiped out. I was told that is part of what the NTM can do.

I Know it is a long time for the treatment as the plan is for me to stay on this "indefinitely" I would however love to have an idea when I can expect the night sweats and lethargy to go away or subside a little.

THanks so much!!!
 
B

beleache

New member
Hi Jennifer.  <div><br></div><div> I have Mycobacterium Abscesses & have been on treatment for a couple of years..  The IV was for 7 mos straight , the oral & inhaled abx are ongoing .. </div><div><br></div><div> I had a cavity in my lung due to the Myco..  I go every 6 mos to Denver National Jewish for Their treatment plan.  The hole has closed up !  </div><div><br></div><div>I cant remember how long the night sweats lasted as this has been going on for a long time ..  Good news is , they HAVE stopped !! </div><div><br></div><div> If you have any questions dont hesitate to pm me.  I remember getting that dx & how scared I was..  After talking to others it helped relieve some of those fears.. </div><div><br></div><div> Take care  <3  joni</div>
 
B

beleache

New member
Hi Jennifer. <br>I have Mycobacterium Abscesses & have been on treatment for a couple of years.. The IV was for 7 mos straight , the oral & inhaled abx are ongoing ..<br>I had a cavity in my lung due to the Myco.. I go every 6 mos to Denver National Jewish for Their treatment plan. The hole has closed up ! <br>I cant remember how long the night sweats lasted as this has been going on for a long time .. Good news is , they HAVE stopped !!<br>If you have any questions dont hesitate to pm me. I remember getting that dx & how scared I was.. After talking to others it helped relieve some of those fears..<br>Take care <3 joni
 
B

beleache

New member
Hi Jennifer. <br>I have Mycobacterium Abscesses & have been on treatment for a couple of years.. The IV was for 7 mos straight , the oral & inhaled abx are ongoing ..<br>I had a cavity in my lung due to the Myco.. I go every 6 mos to Denver National Jewish for Their treatment plan. The hole has closed up ! <br>I cant remember how long the night sweats lasted as this has been going on for a long time .. Good news is , they HAVE stopped !!<br>If you have any questions dont hesitate to pm me. I remember getting that dx & how scared I was.. After talking to others it helped relieve some of those fears..<br>Take care <3 joni
 
N

njlins

New member
I cultured with MAC for a few years but the doctor did not want to treat until she realized how heavy the growth was.  I had the night sweats and felt bad with productive cough.  I too was cultured three times each time they checked on this which seems the norm and all were positive each time.  Due to declining lung function too the doctor started me on treatment for this.  I am on the cocktail of three oral meds that I take daily.  I started treatment last March 2011.  It is now7 months after I started treatment and I see my infecious disease doctor next week and will learn if I finally cultured negative.  I was told that they will treat this for about 12 months after I first culture negative.  I felt better within the first month of treatment with less sputum and night sweats were gone.  So I am eagerly awaiting to learn if this culture was MAC free.  On the down side I have started waking in the AM with sweats when I get up and I have had a bit more sputum.  I am still optimistic all will get better.  BTW, I am 66 and disgnosed at age 53.  Before I was always ill since childhood but with extremely sever sinusitis.  My lungs were not really involved until just before I was diagnosed via the sweat test and genetic testing.  I am an odd one. 
 
N

njlins

New member
I cultured with MAC for a few years but the doctor did not want to treat until she realized how heavy the growth was. I had the night sweats and felt bad with productive cough. I too was cultured three times each time they checked on thiswhich seems the norm and all were positive each time. Due to declining lung function too the doctor started me on treatment for this. I am on the cocktail of three oral meds that I take daily. I started treatment last March 2011. It is now7 months after I started treatment and I see my infecious disease doctor next week and will learn if I finally cultured negative. I was told that they will treat this for about 12 months after I first culture negative. I felt better within the first month of treatment with less sputum andnight sweats were gone. So I am eagerly awaiting to learn if this culture was MAC free. On the down side I have started waking in the AM with sweats when I get up and I have had a bit more sputum. I am still optimistic all will get better. BTW, I am 66 and disgnosed at age 53. Before I was always ill since childhood but with extremely sever sinusitis. My lungs were not really involved until just before I was diagnosed via the sweat test and genetic testing. I am an odd one.
 
N

njlins

New member
<BR>I cultured with MAC for a few years but the doctor did not want to treat until she realized how heavy the growth was. I had the night sweats and felt bad with productive cough. I too was cultured three times each time they checked on thiswhich seems the norm and all were positive each time. Due to declining lung function too the doctor started me on treatment for this. I am on the cocktail of three oral meds that I take daily. I started treatment last March 2011. It is now7 months after I started treatment and I see my infecious disease doctor next week and will learn if I finally cultured negative. I was told that they will treat this for about 12 months after I first culture negative. I felt better within the first month of treatment with less sputum andnight sweats were gone. So I am eagerly awaiting to learn if this culture was MAC free. On the down side I have started waking in the AM with sweats when I get up and I have had a bit more sputum. I am still optimistic all will get better. BTW, I am 66 and disgnosed at age 53. Before I was always ill since childhood but with extremely sever sinusitis. My lungs were not really involved until just before I was diagnosed via the sweat test and genetic testing. I am an odd one.
 
J

JennifersHope

New member
Thanks.. It seems like since I started treatment last week, I feel sicker, fevers are higher and the night sweats are worse.. Has anyone experienced that before?
 
J

JennifersHope

New member
Thanks.. It seems like since I started treatment last week, I feel sicker, fevers are higher and the night sweats are worse.. Has anyone experienced that before?
 
J

JennifersHope

New member
Thanks.. It seems like since I started treatment last week, I feel sicker, fevers are higher and the night sweats are worse.. Has anyone experienced that before?
 
S

stephen

Guest
I was diagnosed with MAI in 1992, 10 years before being diagnosed with CF. At the time, I had been experiencing increasing low grade fevers for years.

After watching it for about 6 month, I was treated with Biaxin and Myambutol for 18 months. It really worked! About a month into the treatments I felt great, and for the first time in memory I wasn't coughing green.

I was good for about 6 following the treatment, then Pseudomonas appeared and the fevers returned. A few years later, genetic testing lead to a CF diagnosis.

Best wishes on your treatments,
Stephen,
69 years old with CF, FEV1 of 46 % but feeling great, thank G-d.
 
S

stephen

Guest
I was diagnosed with MAI in 1992, 10 years before being diagnosed with CF. At the time, I had been experiencing increasing low grade fevers for years.

After watching it for about 6 month, I was treated with Biaxin and Myambutol for 18 months. It really worked! About a month into the treatments I felt great, and for the first time in memory I wasn't coughing green.

I was good for about 6 following the treatment, then Pseudomonas appeared and the fevers returned. A few years later, genetic testing lead to a CF diagnosis.

Best wishes on your treatments,
Stephen,
69 years old with CF, FEV1 of 46 % but feeling great, thank G-d.
 
S

stephen

Guest
I was diagnosed with MAI in 1992, 10 years before being diagnosed with CF. At the time, I had been experiencing increasing low grade fevers for years.
<br />
<br />After watching it for about 6 month, I was treated with Biaxin and Myambutol for 18 months. It really worked! About a month into the treatments I felt great, and for the first time in memory I wasn't coughing green.
<br />
<br />I was good for about 6 following the treatment, then Pseudomonas appeared and the fevers returned. A few years later, genetic testing lead to a CF diagnosis.
<br />
<br />Best wishes on your treatments,
<br />Stephen,
<br />69 years old with CF, FEV1 of 46 % but feeling great, thank G-d.
<br />
 
J

JennifersHope

New member
I am living your story backwards.. I was diagnosed with CF 11 years ago based on a nasal pd testing, and in spite of culturing PA and MRSA, now I am culturing MAC and this other Mycobacteria,, and no one for the love of the Lord knows what is the primary lung disease that is causing me to culture this..

It will depend on what doctor you talk to from still thinking I have CF to Lord knows what... all I know is I am sick as crap and the antibiotics they gave me are making me throw up, coupled with the night sweats that are during the day too, and I want to scream...

Hope this ends soon.
 
J

JennifersHope

New member
I am living your story backwards.. I was diagnosed with CF 11 years ago based on a nasal pd testing, and in spite of culturing PA and MRSA, now I am culturing MAC and this other Mycobacteria,, and no one for the love of the Lord knows what is the primary lung disease that is causing me to culture this..

It will depend on what doctor you talk to from still thinking I have CF to Lord knows what... all I know is I am sick as crap and the antibiotics they gave me are making me throw up, coupled with the night sweats that are during the day too, and I want to scream...

Hope this ends soon.
 
J

JennifersHope

New member
I am living your story backwards.. I was diagnosed with CF 11 years ago based on a nasal pd testing, and in spite of culturing PA and MRSA, now I am culturing MAC and this other Mycobacteria,, and no one for the love of the Lord knows what is the primary lung disease that is causing me to culture this..
<br />
<br />It will depend on what doctor you talk to from still thinking I have CF to Lord knows what... all I know is I am sick as crap and the antibiotics they gave me are making me throw up, coupled with the night sweats that are during the day too, and I want to scream...
<br />
<br />Hope this ends soon.
 
C

caza

Guest
<br>i was diagnosed with mac in about 2002 - they thought it tb at first but after the 8 weeks it took to grow realised it was mac avian.   I also had a cavity brought on by the bacteria i believe and that i should have been treated earlier for it - i was always culturing it but they said my body was copying with it.  I had meds for nearly 3 years - rifampacin   moxifloxacin and amakain iv for one week only.  Hope i am free now - but still have to have regular checks        
 
C

caza

Guest
<br>i was diagnosed with mac in about 2002 - they thought it tb at first but after the 8 weeks it took to grow realised it was mac avian. I also had a cavity brought on by the bacteria i believe and that i should have been treated earlier for it - i was always culturing it but they said my body wascopying with it. I had meds fornearly 3 years - rifampacin moxifloxacin and amakain iv for one week only. Hope i am free now - but still have to have regular checks
 
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