1. < MAC & Bronchiectasis

Just found out I have mycobacterium abscessus!

Posted by jammer @jammer, Mar 18, 2020

AM VERY SCARED HAS ANY ELSE HAD THIS STAIN OF THE MYCOBACTERIA. WOULD LOVE TO TALK WITH SOMEONE WHO HAS GONE THROUGH THIS!!!

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

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 23, 2020
In reply to @pop55 "Hi Pandora, Why did your Dr do a Bronchoscopy? Did you have some symptoms? Abscessus is..." + (show)
@pop55

Hi Pandora, Why did your Dr do a Bronchoscopy? Did you have some symptoms? Abscessus is a scary diagnosis but the more you learn about it the better off you will be. Watch this u tube video by Dr Daley from National Jewish
https://youtu.be/Ml5sJJW6cRU
Do you know what subspecies of Abscessus you have? You want to make sure you have a doctor who is familiar with NTM and Abscessus before you start treatment. There are 3 subspecies of Abscessus and the treatment is different for each one.

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That was an excellent video. I think I will have my next sputem test sent to NJH, I don't think my mac was ever gene sequenced.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 8, 2020
In reply to @pandora24 "Hi pop55! I'm new on this forum as well, and have also been diagnosed in August..." + (show)
@pandora24

Hi pop55! I'm new on this forum as well, and have also been diagnosed in August with M. Abscessus. My doctor has initially indicated holding off on treatment, but strangely, since I had a bronchoscopy, I've started feeling quite sick--deeply fatigued, and with a weird general overall "sick" feeling, with chest tightness. I'm beginning to think I want to do the treatment, no matter how bad it is, because currently I have no energy to enjoy life, and I figure it's better to get it done sooner rather than later....

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Hello Pandora24. I have found that ginsing tea is very helpful in boosting my energy (not recommended if you suffer from heart palpitations). It is tough to keep one's spirits up when you don't have any energy to do even basic daily activities let alone something fun.

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judyhodgern | @judyhodgern | Oct 8, 2020

Hi jammer, I think imepenum is what took care of my abscesses and now though I have Mac and it doesn’t seem to bother me that much I guess my big problem is shortness of breath when I try to do too much and I love to play golf so and in this hot humid weather it’s very hard to play and keep my energy up but I keep trying as long as I check my heart and find it it’s OK.

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poodledoc | @poodledoc | Nov 2, 2020

Beyond Air just released a study using Nitric Oxide to treat M. abscessus They will be doing a clinical trial later this year for patients to self administer NO at home. I see this as a big step in the treatment of all NTM infections. Still in the early stages however. Check out: https://finance.yahoo.com/news/beyond-air-publishes-data-nitric-200100411.html

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 9, 2020
In reply to @poodledoc "Beyond Air just released a study using Nitric Oxide to treat M. abscessus They will be..." + (show)
@poodledoc

Beyond Air just released a study using Nitric Oxide to treat M. abscessus They will be doing a clinical trial later this year for patients to self administer NO at home. I see this as a big step in the treatment of all NTM infections. Still in the early stages however. Check out: https://finance.yahoo.com/news/beyond-air-publishes-data-nitric-200100411.html

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Hi Bill. NIH did a study many years back that proved that Nitric Oxide was successful in treating mac. It got RID of it. The problem had been in being able to use it and make a profit. At that time the equipment was bulky and the amount of time a single patient would need it was too many hours a day.

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1 reply
poodledoc | @poodledoc | Nov 9, 2020
In reply to @windwalker "Hi Bill. NIH did a study many years back that proved that Nitric Oxide was successful..." + (show)
@windwalker

Hi Bill. NIH did a study many years back that proved that Nitric Oxide was successful in treating mac. It got RID of it. The problem had been in being able to use it and make a profit. At that time the equipment was bulky and the amount of time a single patient would need it was too many hours a day.

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Terri, Seems everything always comes down to money. Maybe things will change if Nitric Oxide is found to be a proven treatment for Covid (there are studies going on for that as we speak).

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 10, 2020
In reply to @poodledoc "Terri, Seems everything always comes down to money. Maybe things will change if Nitric Oxide is..." + (show)
@poodledoc

Terri, Seems everything always comes down to money. Maybe things will change if Nitric Oxide is found to be a proven treatment for Covid (there are studies going on for that as we speak).

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Really? Nitric Oxide to treat covid??! That is interesting.

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 10, 2020
In reply to @windwalker "Really? Nitric Oxide to treat covid??! That is interesting." + (show)
@windwalker

Really? Nitric Oxide to treat covid??! That is interesting.

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Early days of the Covid research - my niece is on a study team at our University. The problems are knowing who will respond, at what point to try it, and ramping up the supply chain if it works.
Sue

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