Please respond if you have MAC or MAC-like stuff

ladybug · Sep 27, 2009

Hello,

I've been told we'll likely start treating my MAC since its shown up in my past 3 cultures in a row and my pfts are way down.

Can those who have been treated for this please share your experience with the following:

1. How did you know it was MAC causing symptoms?

2. What was the treatment (length, meds used, etc.)?

3. How awful were side effects? Could you continue working, school, traveling, etc.?

4. Did you feel much better after treatment and regain lost lung function?

5. When treating, did they do a culture for sensitivities ON the MAC or just used the meds they always throw at it?

6. How long have you been MAC free? Would you go through the treatment again?

Thanks....

ladybug · Sep 27, 2009

Hello,

I've been told we'll likely start treating my MAC since its shown up in my past 3 cultures in a row and my pfts are way down.

Can those who have been treated for this please share your experience with the following:

1. How did you know it was MAC causing symptoms?

2. What was the treatment (length, meds used, etc.)?

3. How awful were side effects? Could you continue working, school, traveling, etc.?

4. Did you feel much better after treatment and regain lost lung function?

5. When treating, did they do a culture for sensitivities ON the MAC or just used the meds they always throw at it?

6. How long have you been MAC free? Would you go through the treatment again?

Thanks....

ladybug · Sep 27, 2009

Hello,

I've been told we'll likely start treating my MAC since its shown up in my past 3 cultures in a row and my pfts are way down.

Can those who have been treated for this please share your experience with the following:

1. How did you know it was MAC causing symptoms?

2. What was the treatment (length, meds used, etc.)?

3. How awful were side effects? Could you continue working, school, traveling, etc.?

4. Did you feel much better after treatment and regain lost lung function?

5. When treating, did they do a culture for sensitivities ON the MAC or just used the meds they always throw at it?

6. How long have you been MAC free? Would you go through the treatment again?

Thanks....

ladybug · Sep 27, 2009

Hello,

I've been told we'll likely start treating my MAC since its shown up in my past 3 cultures in a row and my pfts are way down.

Can those who have been treated for this please share your experience with the following:

1. How did you know it was MAC causing symptoms?

2. What was the treatment (length, meds used, etc.)?

3. How awful were side effects? Could you continue working, school, traveling, etc.?

4. Did you feel much better after treatment and regain lost lung function?

5. When treating, did they do a culture for sensitivities ON the MAC or just used the meds they always throw at it?

6. How long have you been MAC free? Would you go through the treatment again?

Thanks....

ladybug · Sep 27, 2009

Hello,
 
 I've been told we'll likely start treating my MAC since its shown up in my past 3 cultures in a row and my pfts are way down.
 
 Can those who have been treated for this please share your experience with the following:
 
 1. How did you know it was MAC causing symptoms?
 
 2. What was the treatment (length, meds used, etc.)?
 
 3. How awful were side effects? Could you continue working, school, traveling, etc.?
 
 4. Did you feel much better after treatment and regain lost lung function?
 
 5. When treating, did they do a culture for sensitivities ON the MAC or just used the meds they always throw at it?
 
 6. How long have you been MAC free? Would you go through the treatment again?
 
 Thanks....

beleache · Sep 27, 2009

Hi Sonia,

I am currently being treated for Mycobacterium Abscesses

1) The Myco wasn't causing me any symptoms , at least that i know of.. Thats probably the scary thing ..

2) I am on 3 abx, IV Cefoxitin , Inhaled Amikasin, oral Clarithromycin.. I have been on this since end of February till now .

3) I am blessed not having any bad reactions.. The inhaled neb takes me 45 min. much like Inhaled Tobi does.. I do IV 3 X's a day & i am using the intermate infusion system which gives me great flexibility !! I would definitely ask to have these if your ins. will cover.

4) Like i said i didn't notice a big change in myself, but i do have to say i feel pretty good lately <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thank You God <img src="i/expressions/face-icon-small-smile.gif" border="0">

5) I think my center & Denver National Jewish do a 3 mo. sputum/Ct scan to check for progress.. So i have had one re check so far & it has shown improvement !!! Thank you God Again <img src="i/expressions/face-icon-small-smile.gif" border="0">

6) Still in treatment.. Don't know the answer to that yet, but as far as i can see at this point , yes i would..

If you have anymore questions please PM me..

Take care & God Bless you.. <img src="i/expressions/heart.gif" border="0"> joni

beleache · Sep 27, 2009

Hi Sonia,

I am currently being treated for Mycobacterium Abscesses

1) The Myco wasn't causing me any symptoms , at least that i know of.. Thats probably the scary thing ..

2) I am on 3 abx, IV Cefoxitin , Inhaled Amikasin, oral Clarithromycin.. I have been on this since end of February till now .

3) I am blessed not having any bad reactions.. The inhaled neb takes me 45 min. much like Inhaled Tobi does.. I do IV 3 X's a day & i am using the intermate infusion system which gives me great flexibility !! I would definitely ask to have these if your ins. will cover.

4) Like i said i didn't notice a big change in myself, but i do have to say i feel pretty good lately <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thank You God <img src="i/expressions/face-icon-small-smile.gif" border="0">

5) I think my center & Denver National Jewish do a 3 mo. sputum/Ct scan to check for progress.. So i have had one re check so far & it has shown improvement !!! Thank you God Again <img src="i/expressions/face-icon-small-smile.gif" border="0">

6) Still in treatment.. Don't know the answer to that yet, but as far as i can see at this point , yes i would..

If you have anymore questions please PM me..

Take care & God Bless you.. <img src="i/expressions/heart.gif" border="0"> joni

beleache · Sep 27, 2009

Hi Sonia,

I am currently being treated for Mycobacterium Abscesses

1) The Myco wasn't causing me any symptoms , at least that i know of.. Thats probably the scary thing ..

2) I am on 3 abx, IV Cefoxitin , Inhaled Amikasin, oral Clarithromycin.. I have been on this since end of February till now .

3) I am blessed not having any bad reactions.. The inhaled neb takes me 45 min. much like Inhaled Tobi does.. I do IV 3 X's a day & i am using the intermate infusion system which gives me great flexibility !! I would definitely ask to have these if your ins. will cover.

4) Like i said i didn't notice a big change in myself, but i do have to say i feel pretty good lately <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thank You God <img src="i/expressions/face-icon-small-smile.gif" border="0">

5) I think my center & Denver National Jewish do a 3 mo. sputum/Ct scan to check for progress.. So i have had one re check so far & it has shown improvement !!! Thank you God Again <img src="i/expressions/face-icon-small-smile.gif" border="0">

6) Still in treatment.. Don't know the answer to that yet, but as far as i can see at this point , yes i would..

If you have anymore questions please PM me..

Take care & God Bless you.. <img src="i/expressions/heart.gif" border="0"> joni

beleache · Sep 27, 2009

Hi Sonia,

I am currently being treated for Mycobacterium Abscesses

1) The Myco wasn't causing me any symptoms , at least that i know of.. Thats probably the scary thing ..

2) I am on 3 abx, IV Cefoxitin , Inhaled Amikasin, oral Clarithromycin.. I have been on this since end of February till now .

3) I am blessed not having any bad reactions.. The inhaled neb takes me 45 min. much like Inhaled Tobi does.. I do IV 3 X's a day & i am using the intermate infusion system which gives me great flexibility !! I would definitely ask to have these if your ins. will cover.

4) Like i said i didn't notice a big change in myself, but i do have to say i feel pretty good lately <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thank You God <img src="i/expressions/face-icon-small-smile.gif" border="0">

5) I think my center & Denver National Jewish do a 3 mo. sputum/Ct scan to check for progress.. So i have had one re check so far & it has shown improvement !!! Thank you God Again <img src="i/expressions/face-icon-small-smile.gif" border="0">

6) Still in treatment.. Don't know the answer to that yet, but as far as i can see at this point , yes i would..

If you have anymore questions please PM me..

Take care & God Bless you.. <img src="i/expressions/heart.gif" border="0"> joni

beleache · Sep 27, 2009

Hi Sonia,
 
 I am currently being treated for Mycobacterium Abscesses
 
 
 1) The Myco wasn't causing me any symptoms , at least that i know of.. Thats probably the scary thing ..
 
 2) I am on 3 abx, IV Cefoxitin , Inhaled Amikasin, oral Clarithromycin.. I have been on this since end of February till now .
 
 3) I am blessed not having any bad reactions.. The inhaled neb takes me 45 min. much like Inhaled Tobi does.. I do IV 3 X's a day & i am using the intermate infusion system which gives me great flexibility !! I would definitely ask to have these if your ins. will cover.
 
 4) Like i said i didn't notice a big change in myself, but i do have to say i feel pretty good lately <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thank You God <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 5) I think my center & Denver National Jewish do a 3 mo. sputum/Ct scan to check for progress.. So i have had one re check so far & it has shown improvement !!! Thank you God Again <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 6) Still in treatment.. Don't know the answer to that yet, but as far as i can see at this point , yes i would..
 
 If you have anymore questions please PM me..
 
 Take care & God Bless you.. <img src="i/expressions/heart.gif" border="0"> joni

marisalynn · Sep 27, 2009

1. I didn't have any symptoms. It was cultured in a sputum culture of mine a few years ago. I still don't really have any symptoms other than the typical slow progression of CF.
2. I started on Ethambutol, Clarithromycin, and Avelox, which they told me I would be on for a couple of years probably or until they didn't culture MAC in my sputum anymore. Unfortunately, I couldn't tolerate the medications (nausea, vomiting, dehydration), so I stopped them after about a year.
3. As I said, the side effects of the meds for me were nausea, vomiting, dehydration, bad taste in my mouth. It was difficult to concentrate at school being so nauseated.
4. I never really lost much lung function, at least not any that was attributed the MAC.
5. When they did the sensitivities for my MAC, it was resistant to most of the meds, which is why I had to go on some pretty powerful ones.
6. I still have the MAC cultured in my last sputum culture to my knowledge. They say that since it doesn't seem to be effecting my lung function, and I couldn't tolerate the medications, it was okay for me at the time to go off the medications. We will closely watch my function, and CT scans, and if I start to have symptoms, we can try to treat it again.
I hope that helped a bit.

Marisa RN, 22w/CF

marisalynn · Sep 27, 2009

1. I didn't have any symptoms. It was cultured in a sputum culture of mine a few years ago. I still don't really have any symptoms other than the typical slow progression of CF.
2. I started on Ethambutol, Clarithromycin, and Avelox, which they told me I would be on for a couple of years probably or until they didn't culture MAC in my sputum anymore. Unfortunately, I couldn't tolerate the medications (nausea, vomiting, dehydration), so I stopped them after about a year.
3. As I said, the side effects of the meds for me were nausea, vomiting, dehydration, bad taste in my mouth. It was difficult to concentrate at school being so nauseated.
4. I never really lost much lung function, at least not any that was attributed the MAC.
5. When they did the sensitivities for my MAC, it was resistant to most of the meds, which is why I had to go on some pretty powerful ones.
6. I still have the MAC cultured in my last sputum culture to my knowledge. They say that since it doesn't seem to be effecting my lung function, and I couldn't tolerate the medications, it was okay for me at the time to go off the medications. We will closely watch my function, and CT scans, and if I start to have symptoms, we can try to treat it again.
I hope that helped a bit.

Marisa RN, 22w/CF

marisalynn · Sep 27, 2009

1. I didn't have any symptoms. It was cultured in a sputum culture of mine a few years ago. I still don't really have any symptoms other than the typical slow progression of CF.
2. I started on Ethambutol, Clarithromycin, and Avelox, which they told me I would be on for a couple of years probably or until they didn't culture MAC in my sputum anymore. Unfortunately, I couldn't tolerate the medications (nausea, vomiting, dehydration), so I stopped them after about a year.
3. As I said, the side effects of the meds for me were nausea, vomiting, dehydration, bad taste in my mouth. It was difficult to concentrate at school being so nauseated.
4. I never really lost much lung function, at least not any that was attributed the MAC.
5. When they did the sensitivities for my MAC, it was resistant to most of the meds, which is why I had to go on some pretty powerful ones.
6. I still have the MAC cultured in my last sputum culture to my knowledge. They say that since it doesn't seem to be effecting my lung function, and I couldn't tolerate the medications, it was okay for me at the time to go off the medications. We will closely watch my function, and CT scans, and if I start to have symptoms, we can try to treat it again.
I hope that helped a bit.

Marisa RN, 22w/CF

marisalynn · Sep 27, 2009

1. I didn't have any symptoms. It was cultured in a sputum culture of mine a few years ago. I still don't really have any symptoms other than the typical slow progression of CF.
2. I started on Ethambutol, Clarithromycin, and Avelox, which they told me I would be on for a couple of years probably or until they didn't culture MAC in my sputum anymore. Unfortunately, I couldn't tolerate the medications (nausea, vomiting, dehydration), so I stopped them after about a year.
3. As I said, the side effects of the meds for me were nausea, vomiting, dehydration, bad taste in my mouth. It was difficult to concentrate at school being so nauseated.
4. I never really lost much lung function, at least not any that was attributed the MAC.
5. When they did the sensitivities for my MAC, it was resistant to most of the meds, which is why I had to go on some pretty powerful ones.
6. I still have the MAC cultured in my last sputum culture to my knowledge. They say that since it doesn't seem to be effecting my lung function, and I couldn't tolerate the medications, it was okay for me at the time to go off the medications. We will closely watch my function, and CT scans, and if I start to have symptoms, we can try to treat it again.
I hope that helped a bit.

Marisa RN, 22w/CF

marisalynn · Sep 27, 2009

1. I didn't have any symptoms. It was cultured in a sputum culture of mine a few years ago. I still don't really have any symptoms other than the typical slow progression of CF.
 2. I started on Ethambutol, Clarithromycin, and Avelox, which they told me I would be on for a couple of years probably or until they didn't culture MAC in my sputum anymore. Unfortunately, I couldn't tolerate the medications (nausea, vomiting, dehydration), so I stopped them after about a year.
 3. As I said, the side effects of the meds for me were nausea, vomiting, dehydration, bad taste in my mouth. It was difficult to concentrate at school being so nauseated.
 4. I never really lost much lung function, at least not any that was attributed the MAC.
 5. When they did the sensitivities for my MAC, it was resistant to most of the meds, which is why I had to go on some pretty powerful ones.
 6. I still have the MAC cultured in my last sputum culture to my knowledge. They say that since it doesn't seem to be effecting my lung function, and I couldn't tolerate the medications, it was okay for me at the time to go off the medications. We will closely watch my function, and CT scans, and if I start to have symptoms, we can try to treat it again.
 I hope that helped a bit.
 
 Marisa RN, 22w/CF

tleigh · Sep 28, 2009

Here has been my experience;
1. Didn't know it was MAC-they present very similar to CF bugs-it was mainly a process of elimination which boiled it down to the myco
2. Did IV treatment for 6 mos./ABX were Amikasin, Tobra, and oral Cipro-this was modified some over the mos.
3. It was a tough couple of months, but I was able to continue school (at the time I was working on a Master's) and some work
4. Did see progress in PFT's and did feel better
5. Did sensitivities on the MAC and created a custom cocktail
6. Still culture forms of myco-would do treatment again

tleigh · Sep 28, 2009

Here has been my experience;
1. Didn't know it was MAC-they present very similar to CF bugs-it was mainly a process of elimination which boiled it down to the myco
2. Did IV treatment for 6 mos./ABX were Amikasin, Tobra, and oral Cipro-this was modified some over the mos.
3. It was a tough couple of months, but I was able to continue school (at the time I was working on a Master's) and some work
4. Did see progress in PFT's and did feel better
5. Did sensitivities on the MAC and created a custom cocktail
6. Still culture forms of myco-would do treatment again

tleigh · Sep 28, 2009

Here has been my experience;
1. Didn't know it was MAC-they present very similar to CF bugs-it was mainly a process of elimination which boiled it down to the myco
2. Did IV treatment for 6 mos./ABX were Amikasin, Tobra, and oral Cipro-this was modified some over the mos.
3. It was a tough couple of months, but I was able to continue school (at the time I was working on a Master's) and some work
4. Did see progress in PFT's and did feel better
5. Did sensitivities on the MAC and created a custom cocktail
6. Still culture forms of myco-would do treatment again

tleigh · Sep 28, 2009

Here has been my experience;
1. Didn't know it was MAC-they present very similar to CF bugs-it was mainly a process of elimination which boiled it down to the myco
2. Did IV treatment for 6 mos./ABX were Amikasin, Tobra, and oral Cipro-this was modified some over the mos.
3. It was a tough couple of months, but I was able to continue school (at the time I was working on a Master's) and some work
4. Did see progress in PFT's and did feel better
5. Did sensitivities on the MAC and created a custom cocktail
6. Still culture forms of myco-would do treatment again

tleigh · Sep 28, 2009

Here has been my experience;
1. Didn't know it was MAC-they present very similar to CF bugs-it was mainly a process of elimination which boiled it down to the myco
2. Did IV treatment for 6 mos./ABX were Amikasin, Tobra, and oral Cipro-this was modified some over the mos.
3. It was a tough couple of months, but I was able to continue school (at the time I was working on a Master's) and some work
4. Did see progress in PFT's and did feel better
5. Did sensitivities on the MAC and created a custom cocktail
6. Still culture forms of myco-would do treatment again

Please respond if you have MAC or MAC-like stuff

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