In shock after MAC diagnosis

Thanks for the info. My family dr thinks I’m a hypochondriac and it’s frustrating. I was able to find an appointment with a new pulmonologist on Monday at a good university. I am doing breathing and clearing stuff but it doesn’t work that well for me. I also doing yoga and exercise, I also have tried eating better. I have lost a lot of weight and I am exhausted. Such a crazy time for me

Hi @auntnanny and @dc1950, it is October now. How are you both now? Do you stll have the Pseudomonas?
i've just been diagnosed with it. Don't know what I will be treated with yet. Was on the MAC meds (Rifampicin, Clofazimine, Arikayce, Ethambutol, Azithromycin) for 4 years to get rid of an Intracellulare that wouldn't leave,
A bit surprised and have only been off the meds for MAC for a few months -- wasn't expecting Pseudomonas infection. This feels even tougher, really. Very tired -- even without any meds yet --and cough a lot with more of a liquid feeling in my lungs,

Hello, I am cleared of it currently. Infectious Disease tells me that it will always live in my lung, and may flare up again. I also have Aspergillum that has colonized in my lung and that comes back from time to time. However, the Pseudomonas is tougher to treat. I was on Tobramycin inhaled thru a nebulizer twice a day, 4 weeks on, 4 week off, along with sodium (1st), Albuterol (2nd) Tobramycin (3rd), until a sputum sample is clear. It took 20 -25 minutes to get thru the treatment. It definitely was the toughest infection I have had. I started feeling better during the 2nd cycle. You get the tobramycin thru a special respiratory pharmacy, not a local pharmacy, its very expensive, and had some trouble getting insurance approval. It took me 3-4 weeks to finally receive the meds. Mine originally started in my sinuses after sinus surgery and eventually moved to my lung. I felt my Sinus Doctor should have been more proactive about getting rid of it. Perhaps it would not have moved into my lung? who knows. Good Luck with it. Any questions, let me know. Take care! Donna

Hi Donna @dc1950, thanks so much for replying, and for all your help. Very glad to hear you have cleared Pseudomonas, for now at least. Here's hoping it will be for a long time!
I will see the pulmonologist tomorrow -- we'll see what meds I'm put on after that. I guess it depends on what meds are most susceptible. Unfortunately I am allergic to penicillins -- had the beginnings of anaphylaxis many years ago. That limits treatment. Also, unfortunately I lost hearing (checked on hearing tests) with aminoglycosides -- and IBS was very bad so I could only take Amikacin for 3 months, maximum. Anyway, we'll see what happens.
I also got it in my sinuses first. Sneezing a lot, then, increasingly more coughing.
Q: Donna, what symptoms did you have when the Pseudomonas went down onto your lungs?
In the past 6 or 7 weeks I have felt like there is more fluid in my chest. And I need the salbutamol puffer much more often.
I really thank you for being there for me Donna,
Annie

Hello Annie, How did you make out at the pulmonologist? Interesting that the pseudomonas started in the sinuses for you as well! I started my symptoms after sinus surgery last June. I never felt I recovered from the effects of it. I started getting worse in October. Night sweats, weird dreams, feeling unwell, tired. In November, there were some days I was too tired to get out of bed, coughing a lot and my lungs hurt. Also, had to use albuterol more than usual. I went to see my pulmonologist, submitted a sample and discovered. I hope you get the right meds to help you through this. Take care, Donna

Hi, from an 81-year old who has pseudomonas for several years. It's not easy..... and it's almost impossible to eradicate but you can live with it, so I've found. I don't know for how long, but I'm working on it.

Spent three days in Mayo's St Mary's hospital in Rochester a couple of months ago. Came out with a picc line that totally cleared the whole problem for the three weeks I had it. Lasted only about a week after removal. I believe they are going to put it in again soon as I'm coughing badly again. It is amazing how you feel when you don't cough once in 3 weeks, voice is clear, no clearing of throat. I wish they could use the same med for inhalation through nebulizer, but am told it only comes for picc line type use.

Just wanted to throw in the picc line in case it hasn't been done for you as it certainly was a break for me. Let me know --Aunt nanny

Anyone have pet birds like me?

Ah Mike, sadly we no longer have birds. Many years ago, when there was an outbreak of histoplasmosis in our state, the State Epidemiologist visited our home & tested us & our birds because we were having lung issues. It wasn't histo, but he was pretty frank about the fact that birds and humans ought not live in the same room due to risks of cross-infection. We were young and stubborn, so kept on with our pets.

Years later, our tiny daughter was having huge allergy issues. The first thing the pediatrician and ENT did was demand that the birds be rehomed. Then on to other measures - and she improved.

Fast forward another 20 years, my daughter took up with a Falconer who owned other birds as well. Due to his poor housing, 2 parrots came to live with her - and she was sick from allergies all the time. Every time I visited her, I came home with an asthma attack. Finally, the last little guy passed about 7 years ago, and once again her allergies decreased.

When I was diagnosed with MAC (MAI), one of the first questions from the Pulmonologist was "Do you have birds in your home?" When I said no, he said "Don't get one." So, as much as I like birds, we no longer keep them. I just feed the wild guys many bags of seed at my feeders.

What has your doc said about birds?
Sue

Hey Sue, just an aside… a little mockingbird with the sweetest songs is knocking on my car side mirror every morning this week, do you think shes lonely? ( we dont get many song birds in the city anymore)

My pulmonologist thinks birds are prime suspects for MAI which I have. I have another year of antibiotics to go. I discovered my MAI from lung cancer CAT scans. So it was caught early on. My treatment is working, but my cancer is incurable.

Good luck and don’t get pet birds.