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

@america Rita, like Terri @tdrell said, sounds like hyponatremia. Drink less water and more electrolyte drinks like Gatorade or others that are similar. Eat tuna and other canned fish, that will raise your salt level. This condition does need medical attention. Please keep us posted.

@heathert ....where did you find the strepfen lozenges? Ive looked on line and asked doctors and pharmacies and was told they are only available outside the United States. First application of Arikauce irritated my throat and I can see how this could lead to hoarseness and a sore throat. Where do you live and where did you find Strepfen lozenges....I’d like me to have them on hand when the need arises. Thank you!

Agree. Because you're eliminating far more salt than you're taking in, you must drastically up your sodium intake and seek medical attention to determine the cause & treatment...this is serious...don't delay.

@hydrang3a I am in NZ, wow I thought you would have them over there. If you could find something similar, that delivers anti-inflammatory direct to the throat, that could be good. Otherwise if you get hoarse just stop for a few days then re-start. Also take Arikace just before bed so that you are not talking after for a long period, taking it during the day was worse for me. If I remember anything else I will let you know. Good luck Heather

Hello. I am at the beginning of this journey with mycobacterium avium. I only received my diagnosis last week based on an episode of haemoptysis, a CT scan and BAL. I am supposed to start treatment but want to discuss it with my GP first as I don't even know the criteria this decision was based on. Other than the haemoptysis and a slight cough, I am otherwise well. I am hoping to buy some time before I have to embark on the formidable treatment course. The side effects list is mighty scary 🙁

Hi guys thanks for all the information. I was told to se an endocrinologist and I have been trying to get an appointment but nothing until January. Meanwhile I’m drinking lots of coconut water and Gatorade. I also tried eating some canned fish. I am hoping to feel stronger soon. This is a long journey. I’ll be checking my sodium levels again next week. Thanks to this wonderful group Rita

@aoise welcome! No GP...find a Pulmo or Infectious disease doc well versed w/MAC...only way to go for best treatment

@aoise I am sorry you have to be here with us. The antibiotics are bad for some and but not for all. I have managed to get through nearly a year with tolerable side effects and have been working full time. It can work. I do get tired but I can function. I sleep better that's for sure. I would not wait if it is causing changes in your lung tissue

@aoise welcome to the group, we are a wonderful caring group, with alot of knowledge. At first the meds can cause side effects , however it gets alot better, I have been on them over 4 years now . At first MAC can be confusing so please dont hesitate to ask us any questions. Heather

@aoise I'm writing to encourage you to consider the treatment if it's being recommended for you. I was adamantly opposed to taking the treatment because my former pulmonologist had frightened me, told me "the treatment is worse than the disease." But then my condition worsened and I developed cavities in my lungs. Now I'm sorry I didn't begin the treatment sooner because it could possibly have reduced the amount of damage caused by the NTM infection. I've been on the treatment (azithromycin, ethambutol, and rifampin) for two months. It's not fun but it's doable and I can see that it's reducing signs of infection. I would encourage you to try to think beyond your current circumstances and make every effort to limit further damage. Best wishes! Olivia in California