Remission: When do you consider yourself in remission from MAC?

Posted by thumperguy @thumperguy, May 23, 2022

Okay, so let’s say you’ve been appointed to proclaim from on high how many days, weeks, months or years of being symptom free must come and go before you may, without fear of making a fool of yourself, declare yourself to be “cured”

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

thumperguy | @thumperguy | Jul 10, 2022

In reply to @lweirdo1 "What's this 7% saline everybody is talking about? Can you fill me in?" + (show)

Hey Weirdo, Love your oh-so-cool ID. Here’s the thing about the 7% solution.
It seems that 7% is the saline concentration that has a chance of actually “kicking ass.” Weaker sisters apparently do little more than titillate the offender, perhaps emboldening it to return stronger than ever. I’ll standby with you, preparing to be humiliated when someone who actually knows something jumps in here and with a well crafted post, exposes me to be the dilettante that I am. Yikes!

lorifilipek | @lorifilipek | Jul 11, 2022

In reply to @lweirdo1 "What's this 7% saline everybody is talking about? Can you fill me in?" + (show)

@lweirdo1 , Nebulizing 7% saline has been a great game changer for those of us with MAC. Here are a couple of papers: See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/, especially tables 2 and 3. Also https://erj.ersjournals.com/content/54/1/1802143.long

lweirdo1 | @lweirdo1 | Jul 12, 2022

In reply to @lorifilipek "@lweirdo1 , Nebulizing 7% saline has been a great game changer for those of us with..." + (show)

Thanks but all of this is way "over my head"! Is 7% saline anything like my Albuterol solution that I use? I want to ask my specialist but I need to know how to explain this all a little better.

lweirdo1 | @lweirdo1 | Jul 12, 2022

In reply to @thumperguy "Hey Weirdo, Love your oh-so-cool ID. Here’s the thing about the 7% solution. It seems that..." + (show)

Thanks much. I'm just trying to figure if this is the same as this Albuterol that they have me using. Same thing?

Sue, Volunteer Mentor | @sueinmn | Jul 12, 2022

In reply to @lweirdo1 "Thanks but all of this is way "over my head"! Is 7% saline anything like my..." + (show)

Hi, maybe I can help clarify things for you.

First, saline solution is just sodium chloride in sterile water, albuterol is a drug. It comes in a variety of strengths, and is used medically for many things. The most common concentration is referred to as "normal saline" and is .9% sodium chloride in 99.1% water. It is the same concentration as sodium in our body solutions, and is used as an IV, alone or to dispense meds, for flushing out wounds, or to dilute medications for some uses. There are also higher concentrations of saline, most commonly 3%, 7% & 10%, used for specific medical purposes.

If you have Bronchiectasis, Cystic Fibrosis (CF), COPD, or some other lung conditions, your lungs may produce a lot of mucus, but due to the disease, may you may be unable to clear it easily. So, sticky mucus, hiding in your nice, warm, dark lung becomes a great breeding ground for bacteria like NTM/MAC. NTM is non-tubercular mycobacteria, of which MAC is one type.

Usually you are advised to do "airway clearance" daily to help get the mucus out. You may use albuterol or another medication, in an inhaler or nebulizer, to help get the mucus moving. Then you "clear" by active breathing/huff coughing, using an airway vibration device like Aerobika, a percussion vest or other methods - to cough out the mucus.

Through research and experimentation, especially with CF patients, it became apparent that using normal saline solution in the nebulizer often helped thin the mucus, making it easier to clear out. Then someone got the great idea to see if MAYBE a higher concentration of saline solution would work even better. What they learned was that 7% saline not only helped thin the mucus, but that mycobacteria could not multiply in that higher concentration.

That was around six years ago. Soon those who work extensively with MAC lung infections began to try having patients use the 7% saline, in conjunction with other treatments, to try to control MAC. In 2019, in National Jewish Health NTM Lecture Series for Health Providers, they recommended 7% saline in the nebulizer as part of airway clearance. Gradually more and more providers, educated either by NJH or their patients, have begun to prescribe 7% saline as part of routine lung hygiene.

You will find a lot of "fans" of 7% saline on this group. I am one. I had to stop the Big 3 antibiotics 2 1/2 years ago because I could no longer handle the side effects. I was still MAC positive, so we made a plan - nebs, saline, airway clearance. I have had 2 short exacerbations, handled with short courses of steroids and extra nebs, since I switched. My bronchiectasis is stable. I don't know if I still have MAC, but if I do, it is low-level enough that it isn't affecting my day to day life.

Does this give you enough information to talk to your doc? Cam I answer any other questions for you?
Sue

lorifilipek | @lorifilipek | Jul 12, 2022

In reply to @lweirdo1 "Thanks but all of this is way "over my head"! Is 7% saline anything like my..." + (show)

@lweirdo1 , I have never used Albuterol. However, I believe it helps relax airway muscles in the lungs to treat bronchospasm. I nebulize saline to add fluid to scarred airways (from bronchiectasis) to help flush out phlegm and mucus that may harbor bacteria. I use 7% saline because studies suggest that 7% saline may kill MAC, and some other types of bacteria, or at least help keep their levels down in the lungs.