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!!!

@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

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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Hi all just found this re absessus https://www.sciencedaily.com/releases/2020/01/200127075247.htm
Very interesting. Heather

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@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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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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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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@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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@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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@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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@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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@windwalker

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

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I just came across a medical article that stated M. abscessus lung disease can actually progress slowly and not always even need treatment.
Here is a paragraph from the article "M. abscessus lung disease may progress very slowly; furthermore, some patients do not require treatment, whereas others require combination antibiotic therapy, including parenteral agents. After discussing this information with the patients, we implemented an observation period of at least 6 to 12 months without antibiotic treatment. When the disease was clearly recognized as being progressive, the patients received a standardized combination antibiotic therapy after hospitalization. In patients with substantial symptoms and/or advanced or progressive radiographic abnormalities, antibiotic therapy was initiated immediately"
The full article can be viewed here https://www.atsjournals.org/doi/full/10.1164/rccm.200905-0704OC

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@poodledoc

I just came across a medical article that stated M. abscessus lung disease can actually progress slowly and not always even need treatment.
Here is a paragraph from the article "M. abscessus lung disease may progress very slowly; furthermore, some patients do not require treatment, whereas others require combination antibiotic therapy, including parenteral agents. After discussing this information with the patients, we implemented an observation period of at least 6 to 12 months without antibiotic treatment. When the disease was clearly recognized as being progressive, the patients received a standardized combination antibiotic therapy after hospitalization. In patients with substantial symptoms and/or advanced or progressive radiographic abnormalities, antibiotic therapy was initiated immediately"
The full article can be viewed here https://www.atsjournals.org/doi/full/10.1164/rccm.200905-0704OC

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Thank you for reminding us of that article. It is a great reminder of what my ID doc says "Mycobacteria is slow to grow and slow to go" – this is generally true of MAC, abscessus, even TB – which is why, in addition to antibiotic resistance, it is so difficult to treat.

The introduction of Arikayce (inhaled Amikacin) has made some doctors more willing to initiate treatment of M. abscessus, but I think many still watch and wait.

All of these considerations are why it is so important to find a care team be experienced in managing NTM.

Sue

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