... know if someone with MAC live here. I also want to know what are your symptons because I feel a lot of symptons. I used ethambutol and my opticnerve was damaged. I also want to know a good specialist at Miami-Dade county.
Hi - my husband and I live in New Zealand and he has MAC. He's been undergoing treatment coming up 2 years now and its looking like he'll never be able to be cured of it, so its a life long medication management plan. Thought I'd respond to your question around symptoms - sweats/fevers, nausea (nearly all the time), aching body (bad flu like all the time too but worse in the morning), poor appetite or where everything tastes like metal (he forces himself to eat), irritable/moody, soo tired all the time and just all round shit. He on Ethambutol, Rithamisim and Cosul and a whole range of other stuff. Fortunately there's been no opticnerve damage yet. It's bloodly hard yakka and requires some strong mental toughness to cope but he does and does extremely well in spite of it all. God Bless
I have mycobacterium avium intracellulare and also hypersensitivity pneumonitis. I was prescribed: Rifampin, Ethambutol, and Clarithromycin. Serious side effects were; liver enzymes elevated, blood changes, rash over large areas, vision changes, extreme exhaustion, metallic taste, no appetite, sharp stomach cramps, skin color changes, etc. I decided to stop taking these meds.
I do notice decline in my lung capacity, but, the side effects of these medications were serious.
I since have developed a constant ringing in the ears, and double vision in one eye. Were these caused by the medications or the MAC - Hypersensitivity Pneumonitis?
I am a 66 year old female - was diagnosed with MAI 1-1/2 years ago and have been treated by an infectious disease doctor with Rifampin, Ethanbutol and Clarithromycin. I had to be taken off the Clarithromycin since I had constant stomach issues and felt sick all the time but no fevers or muscle aches. It did cause me to lose weight. Fortunately I did not really have any different symptoms other than my normal COPD cough. (I am a former smoker - quit 15 years ago). My last CT showed no change either good or bad so my doc is taking me off the antibiotics next month. Don't know what's going to happen next. I decided to look for a clinical trial regarding this and am waiting to hear. But I did hear there is a hospital in Colorado that treats this - I am trying to find out more. Again, I am very fortunate I have none of the symptoms except an occasional night sweat but minimal.
I do drink beer or wine on the alternate days but only one. I do understand alcohol can lessen the affect of the antibiotics. I live on the west coast of Florida but I did hear University of Miami medical center is a possible treatment place. Good luck. Post when you hear more info. There is just not much out there for us. I don't want to believe there is no cure although I have not heard anything positive. I am praying and asking My Dear Lord for a healing.
I was diagnosed with Mycobacterium avium complex and began 3 antibiotic regiment in January 2015. After 3 months I was taken off all 3 drugs due to nausea, vomiting, diarrhea then started back up for 2 weeks and then symptoms returned. Extremely tired, ringing in ears, dizzy, nausea, joints ache all over since I have been off medicines now 3 days. I am being referred to a infectious diseases doctor. The light hurts by eyes. Not sure where this will take me. I will stay in touch.
- Ethambutol Information for Consumers
- Ethambutol Information for Healthcare Professionals (includes dosage details)
- Side Effects of Ethambutol (detailed)
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