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Thu, Feb 28 11:23am · Are Nebulized saline and Aerobika beneficial? in MAC & Bronchiectasis

I have MAC and a modest case of bronchiectasis. I rarely, if ever, cough yet was started on the nebulized 3% saline and Aerobika 3 months ago at my request, hoping to be able to produce sputum for periodic testing to see if the antibiotics are working. I have not yet coughed up anything. I'm wondering if it's beneficial to continue with this practice anyway? Or is the Aerobika aerating my lungs to dislodge the MAC so the antibiotics can work better, even if I'm not producing sputum?

Oct 22, 2018 · Are all of you NJH patients with MAC doing pulmonary hygiene? in MAC & Bronchiectasis

@alleycatkate Which Dr do you see at Mayo? I am so surprised my pulmonologist there says I don't need either the Aerobika or nebulizer. I think I am going to insist on it.

Oct 20, 2018 · Are all of you NJH patients with MAC doing pulmonary hygiene? in MAC & Bronchiectasis

@windwalker Thanks for your always informative info! I'm wondering how you inhale saline, or is that what the Aerobika is used for? Or is it put in a nebulizer? I will be asking about this at my next appointment. Also, which doctor do you see at Mayo? I keep reading about Dr. Aksamit and wonder if I should consult with him also. I see Dr. Clain, who is a wonderful pulmonologist; although I'm not sure if he "specializes" in MAC or not.

Oct 17, 2018 · Are all of you NJH patients with MAC doing pulmonary hygiene? in MAC & Bronchiectasis

I'm wondering if all of you NJH patients with MAC are instructed to use an Aerobika for pulmonary hygiene even if you do not have a chronic cough? My Mayo clinic pulmonologist says I don't need to use one as I do not cough so there would be very little benefit of using one. I realize NJH is the top clinic for MAC so I'd like to know what their doctors suggest.

Oct 17, 2018 · Has anyone ever been cured of MAC? in MAC & Bronchiectasis

Has anyone ever been cured of MAC? Or even for at least 20 plus years?

Jul 3, 2018 · Symptoms of tingly arms, hands, feet and calves in MAC & Bronchiectasis

@windwalker, @jkiemen, Yes they are doing a suseptibility test and I am waiting for it to come back. I am actually just as concerned now with the neuropathy that I am having in my feet and hands. I assume it was caused by the ethambutol. I quit taking it 2 months ago and the neuropathy seems to be getting worse. Has anyone had this happen? If so, has anyone had it go away in time?

Jun 27, 2018 · Symptoms of tingly arms, hands, feet and calves in MAC & Bronchiectasis

Hello @windwalker: So far I have not been doing any nebulized saline treatments so will ask my doctor about that. After first being diagnosed in March 2017, I asked my Mayo doctor about how to avoid reinfection. He said "Just avoid indoor hottubs and don't worry about it as there is no way to avoid it". When I became sick with MAC symptoms again after a year while still on the 3 antibiotics, I learned by way of scouring the web that there are many ways to avoid the bacteria. I am very discouraged that he didn't tell me the facts so I could have helped myself. I am now doing everything recommended to avoid it. Also, I am wondering what a suseptibility test is that you mentioned? Is it possibly a list of drugs that will work with the strain I am infected with? I am now waiting for the bronchoscopy results to come back so maybe it will come along with it?

Jun 23, 2018 · Symptoms of tingly arms, hands, feet and calves in MAC & Bronchiectasis

Well here it is 4 months later after I first posted asking about symptoms of MAC. It turns out that my returning symptoms while being on the Big 3 antibiotics is being caused by reinfection of MAC and not the antibiotics. I was on them for 14 months when I began to get sick again. I just returned from the Mayo Clinic where I had another CT and a bronchoscopy (I do not cough so have no sputum to test). The preliminary test came back positive for Mycobacterium. Now I need to wait 4-8 weeks to see which strain it is to decide which meds to try next. I felt great on the antibiotics with no symptoms at all so was pretty confident I was being healed. Now I am back to having the usual MAC symptoms of nausea, stiff muscles, hot, headache and a new one this time; tingly/burning hands and feet. Have any of you had luck with treating any of these symptoms with either OTC or prescribed medications? I've tried Aleve, Tylenol, Zantac and Zofran with no relief at all. I feel like I have the flu every day. I would be grateful for all recommendations you might have!