Connect
← Return to I was diagnosed with MAC in May 2015.
Discussion
I was diagnosed with MAC in May 2015.
MAC & Bronchiectasis | Last Active: Jan 17, 2017 | Replies (85)Comment receiving replies
Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here .. I've learned SO much from our forum members .. good people! You will see that when I was diagnosed in 2007 .. was on 5 antibiotics for 30 months .. have been negative now since May 2014! See Dr. Timothy Aksamit, a specialist in MAC at Mayo Clinic at Rochester MN. I am now age 72 .. doing great .. exercising, traveling and living life!
I don't know how you feel about this .. but I have had GREAT experience with acupuncture for sinus/nasal issues. I also have bronchiectasis .. big time but have been told the terrific coughing is in part due to the sinus/nasal issues. I googled acupuncture in our area .. found a practitioner who graduated as an MD Internist in China .. PLUS had been brought here to teach acupuncture. SO .. do your "due diligence" .. find a good practitioner. I found 4 visits really helped my issues .. was told it can take 5-6 depending on the severity.
It worked so well for me I have now sent my husband who has suffered a LOT of sinus issues for a long time .. he has only gone 2 times and says he can see the difference already .. and he is a bit of a sceptic! I reminded him that in some countries they use acupuncture for surgeries!
In terms of the Rifampin .. my only side affect was a LOT of sleep disturbance .. which went away when I stopped taking it. But every person's body is different and will react differently. Hope this helps!
Stay strong .. stay positive .. stay happy!
Katherine/katemn
Replies to "Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here ....."
I have great days too. I take my meds at 5 or 6, when eating. I don't have any side effects. I have one month down. But just glad to be alive and feeling well....
Hi Tessie, I know the journey sometimes seems long and tough .. but I encourage you never to skip your meds. Those mycobacterium are kina sneaky fellows .. we want to always keep one step ahead of them! Just remember that you are a Warrior and they are the enemy .. AND you ARE going to be the Victor! You WILL NOT let them win!
Tessie, you will be surprised how fast the time goes .. just be present to each day we are given .. enjoy THAT day. Remembering that many people are no longer given this particular day .. that we are blessed for each day! I am sending you a hug! Katherine (and another one to Sophie is a wonderful light on our Forum!)
We must have started meds around the same time. I feel good too. Tomorrow i will have lsb work done since my doc wanted me to go thru the first month to see if i had any side effects. I was told that if you can make it thru the first month you should be good... hopefully that is true..
If so, thank God!!!!!
Sophie
I'm only one week into meds and my first blood work is 2 weeks after start. I think feeling good is a good sign you are tolerating them and fingers crossed your blood work will be good. I heard drink tons of water.
Let me know.
Kay
Jill
I'm a week in and have all of the above except thirst, but I drink so much water always that might be why.
I take my E and azithromycin at dinner and due to being pretty sure Rifampin is the insomnia culprit taking it in AM. I hope to sleep better tonight.
The nausea is horrid, hoping that subsides over time. My doc and people on this forum say it does. There are people who can't tolerate the drugs, I am going to give it my very best shot. I do understand that for some it's life quality. Bodies are all different.
Hope you feel better soon, hope info too 😉
Kay S
hi, Jill Etibi (ethambutol 400 mg) made me ill. Too much running to the bathroom. The doc changed it for me. Regardless, takes me 3-hrs to feel fairly normal after taking meds.
As you said, bodies are all different.
I had a little diarrhea in the beginning, no problems now....
Jill, I have been on the 3 diff. antiobiotics for 3.5 months with some side effects - mild thank goodness ie stomach rumbling and some mild diarrhoea. Recent CXR showed infection is still progressing, but I feel much better and have stopped the terrible coughing which was the worst symptom. Biopsy and 3 x CT scans all confirm. Good luck with you treatment. JO
Connect
thanks Sophie. Your attitude gives me some comfort. I admit skipping the odd day off meds, only once or twice tho. The process is too long but as we know it's hard to kill.