It was a problem for me. I used a moisturizing mouthwash (I forget the name) and sucked on gin-gin candies. The bad news - after doing it for 2 years, several fillings failed (dentist says dry mouth increases this risk.) I had to have 4 crowns in the last 5 years after only having one in my first 70 years.
Please be diligent and ask your dentist for advice. MAC is hard enough without adding tooth issues!
Does the fatigue get better? I’ve been on the antibiotics for two weeks now and I am so tired. Low energy and and wanting to sleep often. The dry mouth is contributing to my feeling of nausea and little appetite. Wondering when I might start feeling better?
Hi
I’m avoiding the TB drugs ( Big 3 ) due to the possible side effects on my eyesight, hearing, skin, liver GI tract, cardiac and kidney function etc. with the likelihood of only 30% conversion rate and possible re infection with another MAC strain via the environment ( hot water/ shower head, soil, local streams etc and maybe the Bird Feeder too. )
I was a student nurse in the 60’s and administered these drugs in an infectious disease unit to patients with TB and two had Leprosy. And these are the main drugs prescribed for Non Tuberculous Mycobacteria ( not much progress then)
I have ‘ moderate Bronchiectasis and Mac ( chimera and intracellare) which I believe are ‘ slow growers’
I’m doing daily airway clearance with 7% saline, Acapella etc.
I am not breathless, minimal cough and sputum ..at the moment and feel ok with the help of Encore nutritional supplement.
Thanks to this group I am keeping up to date on NTM ( MAC ) and online lectures from Specialist Respiratory Practitioners which has helped me come to this point in my own management.
Has anyone done any research on patient survival rates with Nodular MAC who have not taken the Big 3?
Stay as well as you can. 🤗
SP
I had a cough, clearing my throat, night sweats, and lost weight. I seemed to have more hair in the drain but I wasn’t sure if that was from MAC. I was on meds. For 18 mos. And did not have a good team for the first 8 months… I learned lots from this site and found a better doc. I survived the meds., although it wasn’t fun. I have numbness in my toes but I generally feel better.
I'm glad you feel better! Can you describe what made your team insufficient the first 8 months? What made your subsequent doctor better? I ask because I'm considering going on the meds. I like my pulmonologist but don't know if he's the best. He does treat patients with MAC an bronchiectasis.
I'm glad you feel better! Can you describe what made your team insufficient the first 8 months? What made your subsequent doctor better? I ask because I'm considering going on the meds. I like my pulmonologist but don't know if he's the best. He does treat patients with MAC an bronchiectasis.
Winema, If you go on meds get baseline hearing and eye exams. My pcp sent me to a local pulmonologist. This pulmonologist said she treats hundreds of people with bronchiectasis (red flag, I live in a small NE town) She gave me an acapella, inhaled steroid and a sputum cup and sent me on my way. My appointments were cancelled several times, they lost blood work done there and no one showed me how to use other airway clearance. She also told me I am going to get way worse and this would never go away. Sent me to infectious disease dr. who claimed he treats many MAC patients. He ordered sputum induction at the hospital and I was Pos. for MAC. He told me treatment is far worse than disease but I have to do the meds. Asap. or the MAC would eat my lungs. He never had me do a baseline hearing exam or eye exam. I asked him to do sputum culture 8 months into treatment …. Only because I finally found this site and was getting educated. I got super sick on a couple meds. and he wasn’t patient and threatened to do iv infusions in the office if I couldn’t handle what I was taking.
After I found this support group I asked about doctors that treat this in my area and was given a name of a doctor that specializes in Bronchiectasis. (Thankful to Linda E) What a huge difference and wish I found him and this support group in the beginning. I don’t have ID doc, just pulmonologist. He is kind, thorough, patient, I feel listened to and he knows his stuff. I now nebulize 2xday and feel like I am supported. Lots of great advice and support here. Rosemary
Does the fatigue get better? I’ve been on the antibiotics for two weeks now and I am so tired. Low energy and and wanting to sleep often. The dry mouth is contributing to my feeling of nausea and little appetite. Wondering when I might start feeling better?
My original pulmonologist told me "MAC is slow... to grow and slow... to go." Not what we want to hear, but I bet I had it for 3 years before diagnosis. After four months on antibiotics I started to adjust to the meds and feel a little better.
Unfortunately, I did not convert to a negative sputum culture, so after a year I was prescribed the Big 3 DAILY and felt worse. Now, 6 years later, they would be talking about Arikayce - I think people now have a lot better chance of clearing.
Are you also doing daily airway clearance? Are you using 7% saline?
Just two days. Stopped my meds. Will talk to doc on Monday.
Seems a bit better today since I stopped meds. No rash at all but feels like I should have a rash.
Will post Monday what happens.
Hi Jean
There is a lot of info on NTM on you tube, NTM ir, (USA) and the European Lung Foundation etc.
I’m just hoping daily Airway Clearance, nebuliser with saline, exercise and a good diet will help control the NTM for now but who knows as I wait and watch …
My original pulmonologist told me "MAC is slow... to grow and slow... to go." Not what we want to hear, but I bet I had it for 3 years before diagnosis. After four months on antibiotics I started to adjust to the meds and feel a little better.
Unfortunately, I did not convert to a negative sputum culture, so after a year I was prescribed the Big 3 DAILY and felt worse. Now, 6 years later, they would be talking about Arikayce - I think people now have a lot better chance of clearing.
Are you also doing daily airway clearance? Are you using 7% saline?
Yes, I am doing daily airway clearance with 7% saline. What is Arikayce? I’m really struggling with anxiety and feeling depressed with this condition and treatment. Trying to exercise and keep my mind from dwelling on everything, but it’s been difficult. Any advice how to overcome the anxiety? Lots of prayers needed
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Does the fatigue get better? I’ve been on the antibiotics for two weeks now and I am so tired. Low energy and and wanting to sleep often. The dry mouth is contributing to my feeling of nausea and little appetite. Wondering when I might start feeling better?
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1 ReactionHas anyone had any skin irritation. My skin almost hurts to touch. But no rash at all.
SP,
Glad you're stable on your present regime. Can you share how you access the lectures by pulmonary specialists?
Jean L
I'm glad you feel better! Can you describe what made your team insufficient the first 8 months? What made your subsequent doctor better? I ask because I'm considering going on the meds. I like my pulmonologist but don't know if he's the best. He does treat patients with MAC an bronchiectasis.
Winema, If you go on meds get baseline hearing and eye exams. My pcp sent me to a local pulmonologist. This pulmonologist said she treats hundreds of people with bronchiectasis (red flag, I live in a small NE town) She gave me an acapella, inhaled steroid and a sputum cup and sent me on my way. My appointments were cancelled several times, they lost blood work done there and no one showed me how to use other airway clearance. She also told me I am going to get way worse and this would never go away. Sent me to infectious disease dr. who claimed he treats many MAC patients. He ordered sputum induction at the hospital and I was Pos. for MAC. He told me treatment is far worse than disease but I have to do the meds. Asap. or the MAC would eat my lungs. He never had me do a baseline hearing exam or eye exam. I asked him to do sputum culture 8 months into treatment …. Only because I finally found this site and was getting educated. I got super sick on a couple meds. and he wasn’t patient and threatened to do iv infusions in the office if I couldn’t handle what I was taking.
After I found this support group I asked about doctors that treat this in my area and was given a name of a doctor that specializes in Bronchiectasis. (Thankful to Linda E) What a huge difference and wish I found him and this support group in the beginning. I don’t have ID doc, just pulmonologist. He is kind, thorough, patient, I feel listened to and he knows his stuff. I now nebulize 2xday and feel like I am supported. Lots of great advice and support here. Rosemary
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Helpful -
Hug
8 ReactionsMy original pulmonologist told me "MAC is slow... to grow and slow... to go." Not what we want to hear, but I bet I had it for 3 years before diagnosis. After four months on antibiotics I started to adjust to the meds and feel a little better.
Unfortunately, I did not convert to a negative sputum culture, so after a year I was prescribed the Big 3 DAILY and felt worse. Now, 6 years later, they would be talking about Arikayce - I think people now have a lot better chance of clearing.
Are you also doing daily airway clearance? Are you using 7% saline?
How long have you been taking the meds? This sounds like a potentially serious reaction. Have you told your doc(s) ?
Just two days. Stopped my meds. Will talk to doc on Monday.
Seems a bit better today since I stopped meds. No rash at all but feels like I should have a rash.
Will post Monday what happens.
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1 ReactionHi Jean
There is a lot of info on NTM on you tube, NTM ir, (USA) and the European Lung Foundation etc.
I’m just hoping daily Airway Clearance, nebuliser with saline, exercise and a good diet will help control the NTM for now but who knows as I wait and watch …
-
Like -
Helpful -
Hug
2 ReactionsYes, I am doing daily airway clearance with 7% saline. What is Arikayce? I’m really struggling with anxiety and feeling depressed with this condition and treatment. Trying to exercise and keep my mind from dwelling on everything, but it’s been difficult. Any advice how to overcome the anxiety? Lots of prayers needed
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Helpful -
Hug
5 Reactions