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Posts (9)

Sun, Mar 17 10:57pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Terri, I am in the military and have done multiple Iraq and Afghanistan deployments. I should have more info Tuesday morning after follow up with eye doctor. My eye doctor said she has only read of it and never actually seen it in person before. I’ll keep you updated.

Sat, Mar 16 2:20pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Tdrell…I have a follow up with eye doctor Tuesday morning. I will ask for an eye culture. She is convinced it’s an infection from the MAC. The red ring formation around the iris is textbook sign similar to Ocular TB infection. The steroids helped with pain and redness but I’m left with a strange white spot where the red ring was and a little pain left. She said to continue with ethambutol as she is pretty sure it’s not from the drug. Pulmonologist said to stop the Ethambutol but said the eye doctor would know more if I decide to continue with the medication. Frustrating…this whole experience seems to be a roller coaster ride of ups and downs.

Fri, Mar 15 4:27pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Hi I am curious if anyone has ocular infection from the NTM MAC? I woke up today with eye pain and a red ring under my iris. It hurt enough to go to optometrist. She seems to think it’s from the infection. I was concerned it was from a side effect of the medication Ethambutol. It’s my right eye. Not itchy or runny just very painful and the red ring like where your iris meets the white part of eye. Has anyone else experienced this? I’m on steroids topical drops for now. I guess still take the Ethambutol for now too. Thanks

Wed, Mar 6 8:19pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Thanks Irene. I am interested to see what the ID doctor has to say. I was a little skeptical being referred to ID considering they don’t specialize in the lungs but I guess it makes sense.

Wed, Mar 6 6:55pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Hello everyone…I saw my new pulmonologist today and he prescribed the rifamprin and decreased my previous 1200mg a day ethambutol to 800mg. I finally feel a little relieved that I have the necessary medicines to help kill the infection. Frustrating I had to wait this long and the previous pulmonologist didn’t think it was needed. I still have yet to see an ID Doctor but the referal was made. What are the advantages of ID Doctor? Any questions I should ask them when I see them? Also anyone with Bronchiectasis what treatment if any helped you? Are inhalers a good idea? My new pulmonologist said that I have moderate Bronchiectasis and he agrees with the MAC infection diagnosis as well. I will be starting the Rifampin tomorrow. Anyone had any issues with this medicine? The other 2 seem to be ok for me so far. It’s been 28 days since starting the meds. Hope everyone had a good day today and ready for spring to arrive!

Sat, Feb 9 7:10pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Thank you for the information. I will definitely look into that. Unfortunately I am stationed in Fort Drum which is in Upstate NY so not sure how I may get the chance to go there being active duty stationed in NY. Definitely worth looking into esp for the depolyment related specialty. I am helicopter pilot in the US Army. Going on 15 years now. Glad to hear you have peace of mind at the NJH. That is a relief in itself!

Sat, Feb 9 5:53pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Thanks Sue, the army doctor referred me to my current doctor who is a pulmonologist who did the bronch. My pulmonologist is referring me to the infectious medicine doctor to treat the MAC but unfortunately isn’t a lung specialist only infectious medicine. I asked my army doctor whom you’re right isn’t very familiar with this to refer me to a different pulmonologist who also specializes in complex lung infections which would also be able to provide a second opinion on everything hopefully. I hope the referral process is fast. Good to know it’s a relatively slow growing infection until I can meet with the new doctor. I will ask my current pulmonologist the questions you previously asked those are very good questions. Thanks again. I hope wherever you are in this process is going well for you! I’ll post an update once I know more. Have a good weekend.

Sat, Feb 9 4:46pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Hi Sue… a little background on me. I am 34 in the military. Deployed 3 times to Iraq once to Afghanistan. Most likely got the broncheastasis from the burn pits as I am otherwise very healthy never smoked. Last 2-1/2 years I been coughing small amounts of blood so I thought I should finally tell the doc. They did chest X-ray and saw some abnormalities. Followed up by ct and found bilateral scarring on the lungs and multiple modules and cavities. They biopsied the suspicious nodule and diagnosed with MAC lung disease. My pulmonary doctor doesn’t seem to be very knowledgeable and referred me to infectious medicine doctor who I haven’t met with yet due to referral process. I’m trying to get second opinion from a different pulmonologist on everything. I’ve had no mention of treatment for the broncheastasis. My condition is getting worse by the day and my lungs feel like they are on fire. I’ve called twice asking about the medication prescribed with no answer. It is really disappointing. For now I am taking the ethambutol and arythromycin until I can get more answers. I just feel like time is not on my side and this isn’t doing what it needs to do to treat it. Thank you for the reply.