(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Hi and welcome @sandysupermom I was on Amikacin Inhaled for a year. I only completely lost my voice for 3 days early on , but my voice was a little croaky sometimes. I did not get any vertigo but you say your mum already gets this so you need to ask your dr. For me it was really worth it, I got a clear sputum and my cavities closed, where as on the meds 3 days a week for 2 years It hardly changed anything on my CT. All the best Heather

OMG this is so scary, I was just told I have MAC . I live in FLorida and my doctor tells me the spores are in the air, soil even the water. Bad news.

@jammer...I know it sounds scary, but many of us have beaten it and we live for years without an active infection. I haven't gotten re-infected even though I live on the river and work in my garden every day.
The big 3 (antibiotics specific to the type of organisms) do work. Read through the discussions and you will find many helpful suggestions.
This is a problem to be solved and this site is the place to find answers. There are suggestions of what questions to ask your doctor and what tests to demand. You will be able to handle this.

Thank you for your words of wisdom and encouragement , I read about many side effects from meds like blind, loss of voice etc. VERY scary.

@jammer...Yes, there may be side effects, but the ID doctors make sure your eyes are checked every month and they do blood work frequently to catch any bad consequences before they become permanent.Your lung damage may be mild enough that the strong antibiotics aren't needed. Get copies of your records and second opinions.Then you can make informed decisions.

Not a fun Dx but through this group you'll be fear-free! So many treatment options from folks' docs all around the country...include no need to treat if you're symptom-free like me. Please read through the posts, save those that are most relevant for you, and enjoy the feeling that you're not alone, and you'll be OK!

Hi I also live in Florida. I was infected 4 years ago and the town where I live there’s a lot of new construction with homes. My local pulmonologist said I could have been affected by all the open soil and dust flying around. But I know our water here is not the best also. I was so scared at first but life goes on and we try to live the best life that we have. I hope you feel encouraged and feel better. Also I pray that you doctors will work with you so you can make the best decision. This group has helped me so much! I am blessed to have found so many friends with so much knowledge of this disease. Hugs Rita.

I also have common variable Immunodeficiency ,(CVID) as well as MAC. I tried the 3 antibiotics and was not able to tolerate two of them. So I was discontinued. Now my lungs have gotten much worse. My pulmonologist is referring me to UCLA for treatment. I have also developed Bronchiectasis from the MAC infection. I do not know anyone with CVID. Does anyone on this discussion have CVID?

I live in Leesburg in central Fl. I just learned 3 days ago about my MAC he is going to do a bronco next week to get a sample from my lungs to see how bad mine is. My heart doctor found my problem while doing xray of my heart. I have never had any problems so this would not have been found yet if not for my heart doctor. Thank God. My pulmonologist will send me to Gainesville for treatment. This I am so worried about all the side affects. I moved to my dream retirement spot and now I learn Florida is making me sick. Don't that suck. Thanks for the info and God bless you, the doctors don't tell you all so we have to ask questions from those that have been there. Pat

Thank you so much for your words