New MAI diagnosis with also a fungal infection

Posted by tamilyn @tamilyn, Tue, May 21 7:56pm

In late February I had the flu then pneumonia then sepsis. My lung Ct showed several nodules and a large mass in my right lung. I was in the hospital for 9 days and on 2 antibiotics, steroids, albuteral neubuizer treatments and since the mass decreased in size on a follow-up CT after only five days, was determined to be just the pneumonia. There were some tree-in bud noted on the CT report so my pulmonologist had me repeat the CT in 6 weeks. There is still some inflammation from the pneumonia but also some new tree-in-buds noted so I had a bronchoscopy a few weeks ago. The cultures are positive for M.avium-intracellulare group and Aspergillus terreus, which is a not so common fungus also found in dust and dirt. I have a follow-up appt with the pulmonologist and he has referred me to the infectious disease doctor for the fungus infection. I was wondering what is the initial medical treatment for the MAI and if anyone else has had the fungal infection along with the MAI. Thank you.

@tamilyn Hi there. It sounds like you had a rough start to this year. Are you at least feeling any better since February? I had MAI and pseudomonas. I feel like I may have had Aspergillis too, will have to check back over my records over the years. Many doctors, mine included, like to take the wait and see approach to treament. Sometimes, your body will fight this off on it's own. There are members on this site who opted to not do the antibiotics (the Big 3 as we affectionately call them). There are those who chose to do a different course of antibiotics (like I did). You can click on my photo icon and my story will pop up. It is a difficult choice to make. No one treatment plan fits all. It must be an individualized plan, because mac affects everyone differently. I was diagnosed with mac in 2005 and declined treatment with the big 3 antibiotics. I was put on a short run of azithromycin instead. It knocked the mac down a bit, but I got sicker over the years, and my lung function steadily dropped year after year. My lung tissue was being destroyed by repetitive lung infections due to bronchiectasis. Please take the time to read over our older posts; you will learn a tremendous amount. We all have differing stories in dealing with this disease. For example: @irene5 wishes she started on the Big 3 antibiotics at the onstart od her infection. She did not, and believes it all got compoundingly worse by not doing so. Others chose no treatment at all, like @alletcatkate and @pfists, and now test negative. So you see, it affects us all differently. Therefore, treatment should be tailored-made for each of us. You can click on a member's @name or icon picture, and their past posts will come up. Then, you can read about each one's individual journey with mac. You can also find a long list of topics regarding this disease on this group's main page under 'Discussions'. Are you able to navigate this group site alright?

Liked by pfists, Brenda R.

REPLY

@tamilyn
Sounds like you have really been through so much this year. You have found some very careing people here on this board.
I have had aspergillus quit a few times and unfortunately am being treated right now for it. I'm on Voriconizole right now. I have not had the kind you have anyway I don't think so. I usually have Niger or fumative variety. I have been told that the air is full of fungal spores and therefore they don't treat unless you are having symptoms or your CT scan shows it may be invasive. I'm also highly allergic to aspergillus with asthma so that makes it more complicated.
Do you have Bronchectasis or are you immune compromised? Or was this a sudden onset of problems?
I had bern testing positive to Mycobacteria Abcessus for quite a long time then I went to testing negative year and half ago. At the time I tested positive they said my ct scan wasn't bad enough to start the antibiotics so I didn't. Then I started testing negative.
It's a choice you must make with your Doctor because each patient is so different.
We have been discussing on these board that some statistics suggest that up to 40% of Mac patients convert back negative without medication. So that's a good thing to know.
I talked to my infectious disease Doctor and my pulminologist plus I got a second opinion at the Mayo before deciding.
Hoping some of this helps!
Shari

REPLY

windwalker and everyone I am wondering if anyone else has this experience. I cough tremendously with bronchiectasis but……98% of the time it is only on the right side of my throat. Not both sides. I have a sore throat on right side — it even feels sore for my tongue to touch. Phlegm comes up only on right side. And now, I kind of feel like my right ear is wanting to hurt. Mayo's did sinus surgery on right side thinking perhaps it wasn't draining properly but I truly can't tell any difference in that. I just can't understand why if all this phlegm is from bronchiectasis that only one side of throat coughs and is sore. Anyone have any ideas???? I mentioned it to several doctors throughout the last few years and they look at me like I don't know what I'm talking about. They almost have me convinced (Ha)….. Hoping someone has a suggestion or an answer or at least has experienced the same.

REPLY
@pfists

@tamilyn
Sounds like you have really been through so much this year. You have found some very careing people here on this board.
I have had aspergillus quit a few times and unfortunately am being treated right now for it. I'm on Voriconizole right now. I have not had the kind you have anyway I don't think so. I usually have Niger or fumative variety. I have been told that the air is full of fungal spores and therefore they don't treat unless you are having symptoms or your CT scan shows it may be invasive. I'm also highly allergic to aspergillus with asthma so that makes it more complicated.
Do you have Bronchectasis or are you immune compromised? Or was this a sudden onset of problems?
I had bern testing positive to Mycobacteria Abcessus for quite a long time then I went to testing negative year and half ago. At the time I tested positive they said my ct scan wasn't bad enough to start the antibiotics so I didn't. Then I started testing negative.
It's a choice you must make with your Doctor because each patient is so different.
We have been discussing on these board that some statistics suggest that up to 40% of Mac patients convert back negative without medication. So that's a good thing to know.
I talked to my infectious disease Doctor and my pulminologist plus I got a second opinion at the Mayo before deciding.
Hoping some of this helps!
Shari

Jump to this post

@pfists Hi Shari. I just have to say, in this war against mac, you are a five star general! Thank you for all of the good info you have shared over the years! Thank you also for always being here with us.

REPLY
@auntnanny

windwalker and everyone I am wondering if anyone else has this experience. I cough tremendously with bronchiectasis but……98% of the time it is only on the right side of my throat. Not both sides. I have a sore throat on right side — it even feels sore for my tongue to touch. Phlegm comes up only on right side. And now, I kind of feel like my right ear is wanting to hurt. Mayo's did sinus surgery on right side thinking perhaps it wasn't draining properly but I truly can't tell any difference in that. I just can't understand why if all this phlegm is from bronchiectasis that only one side of throat coughs and is sore. Anyone have any ideas???? I mentioned it to several doctors throughout the last few years and they look at me like I don't know what I'm talking about. They almost have me convinced (Ha)….. Hoping someone has a suggestion or an answer or at least has experienced the same.

Jump to this post

@auntnanny Jan, I do not have an answer for you on that. I have had localized sore throats before. Yours could be related to your surgery. Only thing I can suggest is gargling with warm salt water 3-4 times a day. You may want to buy a stand-up model room air purifier. The filter is reusable; just rinse out occasionally. I have one. I should use it every night, but mine is old and loud. I should run it for several hours before I retire for bed. I use it mainly during heavy pollen season. Mine is made by Honeywell and I got it at Lowe's. Sharper Image sells them too. Look for a quite one.

REPLY

windwalker — I had same problem before sinus surgery — for about two years prior……. No one has an answer

REPLY
@windwalker

@pfists Hi Shari. I just have to say, in this war against mac, you are a five star general! Thank you for all of the good info you have shared over the years! Thank you also for always being here with us.

Jump to this post

@windwalker
Thanks Terri but I must say it's not a battle I would of chosen or any of us for that matter.
I am also so appreciative for
the help on this board I received too along the way.
I stay hopeful that in the not too far future there will be some effective breakthroughs in this war and we can all celebrate together.
Shari : )

REPLY

Thanks for your replies. I am not symptomatic and am thinking this was all discovered because of the pneumonia. I was recently diagnosed with COPD as well ( probably from my smoking years ago) but am not symptomatic. I have been loading up on vitamins and such to try and heal from the pneumonia/sepsis so maybe they will just re-check my CT in another 6 months and then discuss treatment options if still showing new nodules. I was just curious as to the starting treatment others have had so I will have some info before going to my dr appts. I just moved to a house from an apt and was doing some landscaping before i became ill with the pneumonia so maybe I picked up something from the dirt/sand/dust… i live in Florida so very tropical and sandy… not much dirt in my yard.

REPLY
Please login or register to post a reply.