MAC in sinuses + lungs?

Posted by Brenda R. @brigby, Jul 12, 2018

Hi everyone! I’m looking for anyone else who has been diagnosed with MAC (abscessus) in their sinuses as well as MAC (avium) in their lungs? Thanks, blessings to all, Brenda

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Sorry to respond to your question with a question for myself... I'm new here and seeking answers. If you wouldn't mind me asking, how was the diagnosis made for your lung infection? What time do f testing was done? I'm guessing through a sample of lung mucus, but I might be wrong. I have chronic chest congestion and tightness, but right now, doctors are only focussing on the sinus diagnosis. Thank you to anyone who has knowledge to share about this!

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Profile picture for margiel17 @margiel17

Sorry to respond to your question with a question for myself... I'm new here and seeking answers. If you wouldn't mind me asking, how was the diagnosis made for your lung infection? What time do f testing was done? I'm guessing through a sample of lung mucus, but I might be wrong. I have chronic chest congestion and tightness, but right now, doctors are only focussing on the sinus diagnosis. Thank you to anyone who has knowledge to share about this!

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@margiel17 Welcome to Mayo Connect, can you tell us what kind of doctors your are seeing? From the focus on your sinuses, I am guessing a primary physician and/or ENT (otolaryngologist)? To get someone to focus on your lungs, you need to ask for imaging (x-ray to begin) to check for any abnormalities, then probably get referred to a pulmonologist.
Do you have any diagnosed lung conditions? They do often go hand-in-hand with sinus issues.

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Profile picture for Sue, Volunteer Mentor @sueinmn

@margiel17 Welcome to Mayo Connect, can you tell us what kind of doctors your are seeing? From the focus on your sinuses, I am guessing a primary physician and/or ENT (otolaryngologist)? To get someone to focus on your lungs, you need to ask for imaging (x-ray to begin) to check for any abnormalities, then probably get referred to a pulmonologist.
Do you have any diagnosed lung conditions? They do often go hand-in-hand with sinus issues.

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@sueinmn I'm seeing an ENT, an infectious disease Dr and allergist. I have asthma and that is being followed by my allergist. I had sinus surgery 7 months ago and have had several different types of infections in my sinuses since then. The surgery was to fix the chronic sinusitis but it has t. It's one thing after another. Most recently the MAC infection. It's possibly what I've had all along which is making me more succeptible to other infections. Would an X-ray show anything abnormal if it was a MAC infection in my lungs? Someone on here said they knew the exact strain of MAC so I figured there was some testing.

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Profile picture for margiel17 @margiel17

@sueinmn I'm seeing an ENT, an infectious disease Dr and allergist. I have asthma and that is being followed by my allergist. I had sinus surgery 7 months ago and have had several different types of infections in my sinuses since then. The surgery was to fix the chronic sinusitis but it has t. It's one thing after another. Most recently the MAC infection. It's possibly what I've had all along which is making me more succeptible to other infections. Would an X-ray show anything abnormal if it was a MAC infection in my lungs? Someone on here said they knew the exact strain of MAC so I figured there was some testing.

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@margiel17 A lung x-ray can detect the probability of an infection in your lungs, and another lung condition called Bronchiectasis, which people with Asthma may develop.
These are visible on a clear x-ray and once identified, a CT-scan is often ordered to clarify the extent of involvement. MAC infections have some specific characteristics, but it requires a sputum culture to find out if it is MAC & which one, and whether you may also have its ugly companions Pseudomonas or Aspergillosis.
Note: MAC cultures take 6-8 weeks to grow and allow testing to see which antibiotics your strain responds to.

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Profile picture for irene5 Irene Estes @irene5

Brenda I have only been diagnosed with it in my lungs. However we are looking into the possibility it is in my sinuses as well. I had several dental implants in 2015. I have never been so sick or had such horrible sinus issues/infections including debilitating migraines since those implants. My entire family is convinced my lung MAC is from my frequent invasive dental surgeries over time. I will let you know. Irene

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@irene5 This discussion is fascinating to me. I had MAC for 3 years and am now clear (but now have bronchiectasis and emphysema from who knows what - never smoked). Just prior to being diagnosed with MAC I spent 3 years having all of my teeth replaced due to dry mouth. I had many dental surgeries along the way and one on a sinus. The possibility of this cause and effect had never occurred to me.

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Profile picture for soblessed @soblessed

@irene5 This discussion is fascinating to me. I had MAC for 3 years and am now clear (but now have bronchiectasis and emphysema from who knows what - never smoked). Just prior to being diagnosed with MAC I spent 3 years having all of my teeth replaced due to dry mouth. I had many dental surgeries along the way and one on a sinus. The possibility of this cause and effect had never occurred to me.

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@soblessed After many years of dental work not unlike your own, one of my children suggested that that is where I received my gift of MAC. I did research and it is documented about the water supply in dental offices and mycobacterium , and it certainly makes sense. I was a teacher for forty three years, and all my stress was in my mouth. I started having issues when I had dry mouth as well from Elavil for migraines. I was always sucking on something in class or tucked a wad of gum in my cheek. My teeth had tremendous stress as I was working on my masters degree at that time, teaching, and in the middle of our first adoption. Now, thirty three years hence, I have seven implants and partials. I had an angry kindergartener knock out my own beautiful top teeth! I probably paid for my dentist’s BMW and his Mercedes by the time I was done. My MAC is gone as well. Unfortunately, it was replaced with other unwanted bacteria. C’est la guerre. Best, Irene5

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I’d be very wary of any sinus surgery unless it is an absolute necessity. It’s a profit driven system in the USA. Someone will always suggest surgery.

Many people on this site seem to have more problems, including new infections, after sinus surgery. I wonder if people who have documented or might have compromised lungs are told about the possibility of lung infections and damage before their surgery in sinuses?

Are there studies to support this observation? @sueinmn
Hope you get some answers and relief from symptoms. @margiel17

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Profile picture for jnmy @jnmy

I’d be very wary of any sinus surgery unless it is an absolute necessity. It’s a profit driven system in the USA. Someone will always suggest surgery.

Many people on this site seem to have more problems, including new infections, after sinus surgery. I wonder if people who have documented or might have compromised lungs are told about the possibility of lung infections and damage before their surgery in sinuses?

Are there studies to support this observation? @sueinmn
Hope you get some answers and relief from symptoms. @margiel17

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@jnmy First le me say that in general I agree with your statement "I’d be very wary of any [sinus] surgery unless it is an absolute necessity." This caveat applies to most surgeries.

In answer to your question "...Are there studies to support this observation?", I don't know -maybe you could undertake this as a research project for the group?

In answer to your comment "...Many people on this site seem to have more problems, including new infections, after sinus surgery..." - the people who come to Mayo Connect with questions and concerns post-sinus surgery are ONLY those for whom the procedure was unsuccessful or who had complications. This in no way represents the general population.

My own experience over 20 years ago was that the surgery corrected physical abnormalities to my sinuses - some congenital, others from injury. Before surgery I had 5 or more infections per year; I have had fewer than five infections total since than.

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@sueinmn When I mentioned this site, I wasn’t clear. I was really just referring to this Bronchiectasis MAC group. Over a few years of reading some of the postings, it appears that people have more infections after sinus surgery. They seem to really struggle afterwards. The observation is only anecdotal and you benefitted in a big way from the surgery. Perhaps someone could do that research if they’re interested in learning more about sinus issues.
You’re right of course, there are risks to any procedure or surgery.

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