In shock after MAC diagnosis

@deborahwolf it was easy.

@sylvermoon8 The diagnosis is a blow. It is hard to know that you may have a chronic condition. I have had all the tests more than once. Generally I do not have allot of symptoms. I wear a mask in the Garden N95 type now. I am being changed from three times a week to every day (smaller daily dose of Azithromycin and Ethambutol and same dose of Rifampin. Have many of you made that change? If so how, did you notice much difference? They told me that if anyone is on any type of estrogen replacement, it could make it less effective. So for post-menopausal people like me it may make the cream less effective. They said it can also strengthen beta blockers.

So glad the procedure as easy for you. There is so much to absorb with this diagnosis that fear of procedures shouldn’t be added to your worries.

I thank you for your help. I am calming down about this. I had a long discussion with my doctor and I have a plan. Right now it’s to wait for biopsy results. One step at a time. I think this is a great place to share information and to also support each other! And it’s really helpful to know how people have gone through the same thing you are facing. But I also know we are all different and what is good procedure or strategy for one person may not work for another. Information is valuable but in the end it’s the doctor that you trust that you listen to. I am glad I joined this group. I feel for everyone going through this, it is very tough.

Thought to share my experience with those who are treated with 3 antibiotics. Recently it has been confirmed that my vision loss was due to a year treatment of 3 antibiotics. The culprit was Ethambutol. My vision gets a bit improvement about two months after stopping the treatment. Good to know that the process seems reversible. During treatment I have been monitored by a ophthalmologist, the problem was discovered at ~11 month treatment. Please note that not everyone will have this problem, please discuss with your doctor about this issue.

I’m sorry to hear that has happened to you. I hope it continues to improve.

I’m so sorry about your loss of vision! Can you please tell us what you noticed and when? And how they confirmed it was due to your antibiotics? It is great news that it's improving now that you are off the meds!

@jkiemen I was also changed from 3 times weekly to daily. My infectious disease doc was unhappy with changes he saw in my lung CT and wanted to get more aggressive. At first I had more gastro-intestinal issues and FATIGUE was back like before treatment. Now after about 2 months, the fatigue seems to be less, but I am still losing weight -trying to find a regimen of eating that works again. I have talked to the ID doc and he wants me to try to push through this in hopes that we can get the MAC under control. When I was switched to daily meds, the audiologist did another baseline hearing test and asked to see me every 4 months or immediately if anything changes. The opthamologist sees me every 3 months, and was adamant about keeping the schedule - she does a full visual field exam plus dilated eye exam every time (I also have mild glaucoma.) The ID doc has ordered full blood counts, EKG and liver panel every month, and I see him every 3 months.
As for the beta-blockers, I had to stop taking those a while ago because they interfered with the effectiveness of my asthma medications (which are a beta-agonist.) Hence the frequent EKG to monitor mild heart issues.

I had been monitored by a ophthalmologist. She found my vision field was diminishing and wrote to alert my pulmonologist. I did not feel much about it. I was so scarred and stopped the med right away. Then I was referred to see a neuro ophthalmologist. Went through MRI of head and orbit to rule out tumor growth. When I returned to see the neuro doc, he found my vision improved a bit( about 2 mo after no med). Will see him again in 6 months. He said probably the vision loss could be reversible, however, the time required might be individual dependent. Meanwhile, there is nothing can be done but just wait.

Catalin. Which medications are you referring to that caused the vision problems?