Mycobacteria avium/ cavity in lung

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bloggymom

Member
I just got back from National Jewish. I have mycobacteria avium (have had it for a few years). Well.... we have no other choice than to treat it. I have a tennis ball sized cavity in my lung from it. This is sudden. My last CT scan didn't show this much damage. Yikes!!

On top of it had some more scaring. I guess the bottom lobes of my lungs were crackling as well.

I get to start IV and oral antibiotics in two weeks. I will have 3 month of IV's and then 1 year of oral antibiotics. Looks like I will be at clinic more often as well.

On top of all of this.... I had a mandatory flu shot before I start this hard core treatment (I usually refuse the flu shot).

First I have to have my eyes checked, have my kidneys and liver levels checked. Never a dull moment with this illness!!
 
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ajlindsley

New member
Hi: Sorry to hear that your mycobacteria is causing you some problems. I have a question for you. You say that you have had mycobacteria avium for a number of years. Were you treated at all for it during those years or are the new meds going to be the first attempt at treating it? If you have not been treated for it yet, what was the drs reasoning for waiting? My daughter cultured mycbacteria abscessus last summer and we have not treated it yet. Her lung function actually improved after she was treated for MRSA. We live in Denver and her cf doc consults with National Jewish about her often. Her dr is thinking that maybe surgery might be her best option. Most of the problem area is limited to one lobe so he is thinking that removing that lobe will be more beneficial to her than 18-24 months of IV/oral antibiotics. It seems lie such an extreme option but I understand his reasoning for it. The rest of her lungs are still very healthy. I guess I am just trying to get all the information I can before we have to make the decision. Any inpt you can give would be appreciated. thanks, Amy
 
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Printer

Active member
I have gone through the treatment for MAC. It is not easy and you will hate every minute. Remember the treatment is a life saving experience. WHEN IT IS OVER you will be glad that you did it.

Bill
 
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Deb

Guest
I was diagnosed with MAC many years ago. At that time they did not treat it. They felt that it were "there" but not causing any damage. Well, in 2010 I had my left lung removed. I can't say that it was totally the MAC, because I stopped growing it in my sputum for several years, but I think it was doing damage all the years they thought it wasn't. I believe that National Jewish is now much more inclined to treat this. BTW, I had my surgery at University of Colorado at the recommendation of National Jewish.
Amy--how old is your daughter? I hate to think of someone losing a lung at a young age unless all other options have been tried. That being said, I am doing great after the surgery. I work very hard at keeping my remaining lung healthy and I feel better than I have in years. That left lung was really bringing me down and was a constant source of infection.
You will also find some disagreement among CF docs and Infectious Disease docs. CF docs always want to keep the lung if possible. If your daughter is young ask about transplant possibilities. There is a chance that removing the lung now will prevent her from receiving a transplant later. Since I am older they said I should be able to live out the rest of my life with one lung and not need a transplant. That's a big chance but I['m hoping it is true.
 
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Node

New member
I just finished a 9month marathon dual treatment of both MAC and AFB (m.avium and m.abcessus, respectively) I was on 4 IVs and 3 oral antibiotics a day. (ivs for afb and orals for mac.) It was a really rough 9 months and even though I tested negative for both infections almost immediately, upon completion I began testing positive for AFB though my CT is clear for now ( and much improved over the one taken before treatment.)

The MAC antibiotics that I was on were ethambutol, rifampin, and azithromycin. They can definitely take a toll on you and your liver. You can expect your doctors will be watching your liver closely so lots of blood work and possibly upper quadrant ultrasound(s). Rifampin made me pee orange and inhibited my megace (pill to make me hungry ) from working. Ethambutol can cause damage to the optic nerve starting with color blindess (it didn't affect me so thats one positive thing)

You'll probably get really tired of the treatment sooner than later but PLEASE stick to it and be as consistent as you can with it. These mycobacterium infections will literally eat you alive if you don't shut them down and they won't just go away on their own. I can't stress enough how important it is to not let your guard down around these guys. Listen to your doctors, keep a positive attitude, and destroy that MAC. Also, be happy that MAC will usually be gone once and for all. AFB (as my case shows) can come right back at any time and is just as hard (if not harder) to get rid of the second time.

Good luck.
 
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lilmac1177

New member
i am very surprised at all these cases where MAC was not treated at all for long periods of time...

i'm kinda new to this bacteria as i had a sputum sample within the last couple months culture MAC. my CF clinic contacted me as soon as they knew about it, to have me submit another sample for re-test (because they won't go by just one positive culture in case it was a contaminant the first time around) so they could start treatment as soon as possible. as it turns out, so far the second sample has not grown out MAC *keeping fingers crossed*

i'm curious as to why treatment is not being done as soon as possible...
 
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bloggymom

Member
lilmac1177 said:

i'm curious as to why treatment is not being done as soon as possible...
Click to expand...

I had very little lung damage until now. The cavity snuck up on us.

Yeah the orange fluids coming from my body sounds a bit bizarre.

I am starting Imipenem in two weeks. Not sure what orals yet.

Yeah I am not looking forward to the side effects but I have an excellent care team that I know will help me through it.

Thanks Bill for the positive thoughts (sarcasm) (U) I am trying to think positive and take it one day at a time. If I think of how icky it will be I will get discouraged before it even begins. Tune ups of ANY kind are not fun. I would rather have some side effects than to loose my lung.
 
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Printer

Active member
lilmac1177:

I have had untreated MAC for more than 10 years. Treatment will last as least 9 months. The effects of the treatment is brutal in your everyday life, not something that you don't want to go through unless really necessary.

The second thing is that the treatment, while making you healther, will leave an additional amount of damage to your lungs. If your MAC is like mine, just being there, it is best to just leave it alone.

Bill
 
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stephen

Guest
I was treated for MAC almost 20 years ago, before being diagnosed with CF. The treatment, which involved oral antibiotics, lasted 18 months. During this period, I did not have any noticeable adverse effects - in fact after the the first month or so I felt great.

So I guess different people have different experiences with the treatments. Hopefully you will be "lucky" as I was.
 
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4hats

New member
I cultured MAC about 6 months ago. I had a CT scan therafter and my lungs did not show any MAC related damage. The last several cultures have shown no MAC. I've been on antibiotics twice since then (Zithromax) for staph. Can MAC just have gone away?
 
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ajlindsley

New member
Deb,
My daughter is 12 years old. Her situation is complicated (what CF patient isn't, right?) In the last 12 months she has cultured or been dx with ABPA (resulting in pneumonia and bronchiectasis), MRSA and M. abscessus and more recently pseudomonas. She did the treatment for eradicaing MRSA. Hopefully it worked. Her last 2 cultures have been negative for it. She just finished her 1st round of Cayston. Waiting to reculture next month to see if PA is gone (fingers crossed). We don't know yet if the pseudomonas will change the doctors recomendation of a lobectomy. She goes in a few weeks for a check up so we can ask more questions then. I appreciate everyone sharing their experieinces. It will be a tough decision.
 
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Deb

Guest
Sorry to hear she is having so many difficulties at age 12. I do feel you are in the best hands. National Jewish is fantastic. Years ago I saw Dr. Iseman and I now am followed by Dr. Huitt. As I said, the lobectomy turned out to be a good thing for me. I have not had near as many infections and have actually improved my lung function higher than it was before the surgery. Rest assured that she will be able to function fine with one lung if it comes to that. There is a facebook group for "one lungers".(One lung people unite) Great group of people. Most have lost a lung due to cancer or were even born with one lung. Good luck to you and your daughter.
 
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caza

Guest
Hi Bloggymum I too have mac bacteria and a cavity. I was first diagnosed with this about 10 years ago and they didnt treat me at first as they thought my body copying with it. But i had developed a cavity and it got bigger and bigger. Eventually they had me in hosp and put me on amikacin ivs for week then sent me home on orals Rifampacin and Moxifloxacin and i had these for nearly 3 years. They also wanted to operate to remove the lobe with the cavity as it was causing infection and very big. But however when i went in to have the op they did ct scan and it had closed by about half. They sent me home and hoped it would completely close. It didnt for long while but eventually collapsed down together with my top lobe. I was clear of the mac for about 2 years but now i have grown it again. I have been in hosp for 10 days on Tazocin for other bacteria and they did another ct scan. The big cavity has indeed closed with the lobe collapsed but now i have anotehr cavity lower down. Very small. I am quite upset by this. They say however they will not treat me yet as the growth is quite low. They have put me on doxycycline indefinitely during winter. Have you not been treated for the mac previously.
 
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bloggymom

Member
Here is the reason we let things get so far.....I had a touch of scaring (they thought was normal considering my age) so we waited a year and a couple months to do a CT scan. I have had a rough spring and summer with lots of coughing. Did cardiac/pulmonary rehab and my lung function numbers went up also started oxygen... thought we had figured it out. They started me on asthma drugs to deal with the spasms. Got a junky cough a month ago and we all thought it was just pneumonia. Nope!!

I will not be on the IV drugs for super long (only 3 months and only once a week.... once day at first though). They think the oral meds will do the trick.

Sound like they are going to keep tabs on the hole and the MAC growth much tighter now. Probably will do CT scans more often and be on antibiotics for a LONG time. They want to see me back in clinic more often. So much for the every 3 months.

i just can't believe how junky I am and now much I am coughing. Exhausted just from that. Any sort of physical activity am I am SOB. Luckily I recover quickly from the SOB. I have hardly any "spoons" each day. I am imagine this will get worse before it gets better.
 
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lilmac1177

New member
i guess i was just under the impression that this is a nasty bacteria that should be treated before it causes lung damage??? i'm sure as with everything else, everyone is different in their reaction to bacteria and treatment...
 
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lizlas

Guest
Bill
why do the abx used to treat MAC cause damage to the lungs. ? Ive never heard of that.
 
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lizlas

Guest
I know I dont get this, lets wait til we see damage on the cat scan. .!! I think its rare that MAC is just there, doing nothing. !!
 
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ajlindsley

New member
My apologies to the original poster for hijacking this thread. I wasn't sure how to privately post this to Deb.

"I have not had near as many infections and have actually improved my lung function higher than it was before the surgery."

Deb:Thanks for all the information . The last I heard from her doctor was that she might have only a wedge taken out from her lung-smaller than a lobe. She worked really hard last year and brought her PFT up to baseline after everything she went through. She was 96% in August 2011, 60% in October and back to 96% in May 2012. That may also be why he is waiting on the exact treatment. Her lung function has been really good lately. So here is a crazy story. My daughter's name is Maegan and she has a friend that she has known for 5 years. This friend of hers has a genetic defect that affected the development of her heart. Her family found out last year that one of her lungs was also malformed from this genetic defect. The girl was rx the vest last year-she has seen Maegan do it many times when they have had sleepovers. Also her friend just found out that she will probably be having surgery on her lung next summer. IF Maegan has surgery and IF we get to choose the timing that will be when it is. Crazy that they would find each other and have different but similar situations.
 
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caza

Guest
hi printer - what antibiotics do damage to the lung then cos i have had treatment for mac and had amikacin oral for about week then nearly 3 years of rifampacin and moxifloxacin but didnt realise Carol
 
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