Just started big 3 for MAC: Questions about dosing and more

Thank you.... and congratulations on nearing the end!

Hi there! Was wondering how you are doing on the ethambutol?

Thanks for checking in! I am keeping my fingers crossed-so far, so good. I just completed my first week on all three drugs and have had mild nausea and headache along with my perpetual fatigue. On my off days, I am doing well although I am experiencing more coughing and insomnia than normal. I am guessing it may have nothing to do with the medication and everything to do with the huge amount of pine pollen floating around right now. All in all, I expected the drugs to be much worse and if it continues like this, it is doable. Nancy

@n4seth That’s 3/4 of the battle - being able to tolerate the Big 3. Yay you! irene5

@n4seth Nancy - Are you using a good probiotic to help your digestive system as you continue on the antibiotics? In my experience, which one doesn't matter as much as using regularly.
Sue

Sue, thanks for checking in. Not only am I drinking kefir, eating sauerkraut and yogurt, I am learning to cook with miso. Also taking Florajen. I will try anything that helps! Nancy

I was just diagnosed and my Dr.s are saying they don't want to treat it at this point. They are still testing my sputum samples but not sure for what? It took 3 weeks for the sputum to grow when the MAC diagnosis came. They getting ready to test for other growth through new samples, one being Pseudomonas. How do you treat that, and how do you get it?

I forgot to say thank you!

It is my understanding from my infectious disease doc that MAC is chronic and progressive, but they wanted 3 consecutive positive samples prior to treating.

@janrn1 After a diagnosis of MAC is determined, there are more steps before treatment. First is to determine the drug sensitivity - this takes more time in the lab - because a combination is required, and each strain of MAC may be susceptible (or resistant) to some of the typical drugs. Second is to assess the severity of the MAC infection - the regimen is long and difficult, and mild cases of MAC are often just monitored. That assessment is often done via CT imaging to see the extent of the infection in the lungs. Third is to determine whether other infections are present as well, because they must usually be treated first, through a completely different course of antibiotics. So, it sounds like your docs are doing everything according to the best practices protocols similar to those used by Mayo & National Jewish Health (NJH.)

You asked where pseudomonas comes from - it is another opportunistic pathogen, found pretty much everywhere, that usually only infects people with another underlying condition. For example, it often attacks the lungs of people with COPD, bronchiectasis or cystic fibrosis. It is treated with one or more two week courses of antibiotics, either oral or inhaled.

When I began my MAC journey, I was first treated for pseudomonas - first with oral levoquin for a month, and when that didn't work, with inhaled tobramycin for a month. That finally got rid of it. After that, I commenced 18 month of treatment for MAC, because the drugs couldn't be used at the same time. So it was almost 3 months from initial diagnosis of MAC until treatment of it started. It was over 2 years from the onset of my cough and fatigue until any diagnosis was made. I was repeatedly treated for asthma and bronchitis until a sharp-eyed radiologist spotted evidence of bronhiectasis on a chest x-ray and recommended more exploration.

Others in this group will probably tell you their stories, which vary widely based on their symptoms and other health conditions.

Sue