Macrobacterium abscessus in lungs

@mass This is one of the infections that can affect people with Bronchiectasis, and its treatment is a little different than that for MAC. Here are several recent discussions on the topic where you can meet other with the same infection:
https://connect.mayoclinic.org/discussion/antibiotics-for-m-abscessus/
https://connect.mayoclinic.org/discussion/info-treatment-for-mycobacterium-abscessus/
https://connect.mayoclinic.org/discussion/mycobacterium-abscessus-and-arikayce/
https://connect.mayoclinic.org/discussion/mycobacterium-abscessus-clofazimine-dosage/
Have you had more than one positive culture to confirm the infection? Are you on medication for it now?

Hi there. I also have abscessus and was devastated when I was diagnosed having just finished 18 months on the big 3 for Mai.
So far my consultant is choosing to monitor me closely as I’m fairly stable with few symptoms. However if and when I need to be treated it will be as an inpatient for at least 4 weeks as the medication will be delivered through iv. And then hopefully further treatment at home. Not sure yet what the drugs will be but think the treatment is pretty tough.
Hope that information is helpful. Good luck!

The only one was told to me for this problem is MAC, Mycobacterium vacuum complex iv. Infection that can occur nonturberculous, antibacterial's NTM. lung disease, infection caused by bacteria. Testing sputum and mucus can define what it is..

I have never heard of this particular infection, "Mycobacterium vacuum complex iv." Can you tell us more about it?

I was recently diagnosed with pulmonary mycobacterium abcessus . I will be starting IV home infusions for 4 weeks. I believe they said Amikacin 3 times a week and Tigeciclyne and Imipenem daily. Once that is completed then I will be placed on oral meds. I also may have a lung wedge resection. Anyone else with a similar treat plan .

Me. I.e. the med routine. I did it all at home. Same regimen. The boxes of supplies were delivered. If you only have Medicare A&B, the IV meds aren’t covered by Medicare - declined. If you have good secondary coverage, it takes over the 80%. The infusion center at the only hospital in our area 75 miles one way would not work with us. Additionally I didn’t want to sit in an infusion center every day.
The tigycycline is a rough nausea inducing med - but effective. I was on Zofran but then that constipated me. I stuck with it though and added different fruits and veggies to my diet and pushed more fluids. It was a battle. Good Luck. M.abscessus Abscessus is not a diagnosis anyone would wish for.

@notnancy88 thanks for your input. I have a Medicare Advantage plan and luckily the meds are covered according to the infusion center. Even still the copay’s are insane and I will reach the out of pocket $2100 in a few weeks and then all drugs should be covered this year…I pray for all who have this invasive disease.

@farfalina I came on here to see if anyone else has undergone the lung wedge resection with antibiotic treatment, as well. I just learned that I will need to have the lung resection done on both sides. Is yours just on one side? Do you know how long you will have to be on the antibiotics before the surgery? I have not started any treatment yet but am gathering information and will follow up with my doctor who wanted me to get another CTscan in a few months.

It is not certain if I will have the resection. The doctors want me to undergo the antibiotic treatment first and then it will be determined if I will do the surgery. It will be the right upper lobe where my Bronchiectasis is located. The debate on doing it or not is due to the fact I also have some Bronchiectasis in the right middle and lower lobe, but it is minimal.. since it is not just in one spot, they are unsure if it’s prudent to do it.

@farfalina I am a BIG fan of conservative, nonsurgical treatment first - especially when it involves my vital organs like lungs and heart.
Are you seeing a pulmonologist with experience treating MAC and Bronchiectasis patients? Since both are rare diseases, not all pulmonologists or ID docs see these very much in their general practice. I would personally make sure I am getting treatment from one specializes who is BEFORE considering the surgical option.
Here is a list of many centers where they specialize. Maybe one is near you?
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/