Connect
MAC advise
Hello everyone
Its been while since I wrote to you all. I wanted to get some thoughts on your experiences after taking the meds and how you did.
I have been taking the 3 meds for MAC now for 9 months and my sputum is still positive. I have no major side effects but I feel exhausted all the time and not well.
My ethambutol was increased last month. I just feel like the meds are not working. I thought since they said I was mild to medium infection that it would clear it up. I guess I wasn’t as mild as they thought. My lung ct are not cleared either.
I do albuteral, saline 7% on my nebulizer and a flutter valve . I really do not see much help getting my sputum up.
My infectious disease doctor wants to send me back to Duke for another opinion. Don’t know about that. I was thinking maybe getting her to get me an appointment at Jewish health hospital for an opinion.
Would like to hear your thoughts. I am at a crossroads and need help.
Thank you all
Miriam
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
Hi, MAC is hard to kill. Are you taking the meds everyday or three times a week? Ethambutol is based on your weight. I see my ID doc every month and he checks to make sure the ethambutol is at the correct dosage for my weight, even a couple pounds difference can make a difference in the dosage. For me, I think part of the exhaustion and malaise was due to the meds. I don't know anything about Duke, I haven't gone to NJH (National Jewish Health) but know they are #1 for NTM patients. I tried to get an appointment there while Covid was more active and it took over 7 months plus to get a response. by that time we knew I needed surgery so had the surgery at Mayo, which was closer. It just may take a long while to get in the NJH although things should be a bit better, It'll still take months from the day you send all you medical files in to when they will call to take you. Huff cough, boiling water for drinking, taking baths versus showers (cleaning shower heads regularly if you do), masking while gardening, making sure your Vit. D and Vit A are in normal range (I researched the later on PubMed and brought the articles to my MD who tested and found I was low on both. Basically doing everything you can to decrease your exposure since it's everywhere. I've been a long hauler and on five antibiotics besides using the vest and sodium chloride solution. Since surgery, I've been negative. It's made a world of difference finding that hidden spot and dealing with it. Only a couple more months and I'm off all meds! Praise God. Blessings to you on your journey, be patient and determined. Hope may seem impossible at times, but it's not, it's just around the corner.
-
Like -
Helpful -
Hug
15 ReactionsThank you do much for your thoughts. It gives me hope. My next appointment is Nov 1 and will see what she gas to say. Recently saw a video of Dr Hewitt and she mentions if after 6 mo still no negative sputum you should add amikacin. Do you have thoughts on that.?
Again thank you.
-
Like -
Helpful -
Hug
1 ReactionI heard that was the new protocol, to start Amikaycin after 6 months with no conversion to negative. I can't give you any advice, I can only tell you how it worked for me. Amikaycin was just accepted as a drug when I started it a few years ago.
The Amikaycin gave me a sore throat and difficulty talking. The doctor's finally cut me back to every other day even though there was no change in getting consistent negative tests. I was on four other antibiotics besides the Amikaycin. How sick are you is something you have to ask yourself, how badly does this affect my life? For me, Amikaycin maybe support for healing for me, but not the deal breaker as surgery was. I have read other people say it was a deal breaker for them and didn't need further treatment after that. NTM CAN come back even after years of remission. My life has changed forever because I will always protect and watch out for possible regular exposures. It's taken 5 1/2 years for me to see the light at the end of the tunnel, this round at least. One can only hope for no more. But I've learned to live with it, I'm much kinder to myself and maybe I needed that. Guess, I am just stubborn and didn't want the NTM to beat me, that's why I went with adding more drugs, even though I've struggled with concern about the side effects. It helps to have a doctor really care about you. I know he wants me to beat this almost as much as I. And thankful he's in my corner. Keep learning and adding into your life preventative measures, be kind to yourself and know that you have a friend in your corner that understands.
-
Like -
Helpful -
Hug
9 ReactionsThank you for your thoughts. Will be discussing adding amikaycin at my appt next week and decide what I want to do. Will update and go from there.
-
Like -
Helpful -
Hug
2 ReactionsJust wondering what organism(s) your cultures are growing, and if that has changed over the months of taking the meds?
-
Like -
Helpful -
Hug
1 ReactionMiriam are you exercising regularly?
-
Like -
Helpful -
Hug
1 ReactionI walk. I play golf and walk the course. The last month i have not so much because i tore my bicep and it has kept off the course. Will have surgery in a week to fix it. I thought one of the meds had cause my tendons to tear. Researched and it seems Azithromycin can affect tendons especially if you take it for more than 6 mo. Hard to prove but i was fine before.
-
Like -
Helpful -
Hug
3 ReactionsAvium most of the time but intercellular too
-
Like -
Helpful -
Hug
1 ReactionThanks ya all!
What type of surgery do they do for MAC?