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Thank you for advice , I live in a small town and don’t have a lot of options for ID or someone experienced in this diagnosis. the ID that I saw a month ago told me “ I didn’t look sick enough for treatment “ but be also didn’t have all my cultures back , which he assured me would come back normal. He also thought my symptoms were strictly related to other issues so it’s good to hear someone suggest treatment / antibiotics. I made alot of excuses for my progressing symptoms either to stress or not exercising , so some of it is also my fault.
Replies to "Thank you for advice , I live in a small town and don’t have a lot..."
Hi Heather, I hope you are nebulizing with 7% saline and can access Dr. McShane's airway clearance video. There's one that Sue posted a while back which really helped me. Twenty years ago, I had an atypical pneumonia and was on antibiotics for 3.5 years. I lived in Colorado and went monthly to NJH. I was in bed for almost a year and on the couch for 2 more. I did not look sick at all except for the first 6 months, when my hair was falling out. I had hundreds of nodules and as a result, I got mild BE. I now have moderate BE and M. Abscessus. In 2011, I moved to AZ and did not have the best doctors here. I believe the lack of a treatment plan-in the case I got bronchitis or other infections, took me from mild BE to moderate BE, and now Mycobacterium Abscessus. This site is extremely valuable, I have learned the importance of nebulizing and daily airway clearances. Also, exercise, diet, and if you're a mouth breather-learn to be a nose breather. Even if you are fatigued, exercise as much as you can. Those tiny cilia in your lungs are flattened and exercise helps with their regeneration-to stand up and push the sputum out. The bugs love sugar and carbs, so I've pretty much eliminated sugar from diet-though decreasing carbs is a struggle. Prior to diagnosis, I had night sweats, extreme fatigue, chronic cough, no appetite, muscle aches and I am now fairly asymptomatic (other than a cough when I nebulize and do airway clearance exercises). I also have a better pulmonary doctor, who sees me 1/3 months. Yesterday, he told me to add Zinc and Vit C with my D3. My PFT has not changed since last year. ID doctor wants to hold off on Big 3 until I go to NJH in May. All my nodules have decreased in size, but now I have 1 small cavity-so I'm guessing, I will be on BIG 3 (or 4) soon. I hope you feel better, I don't think there's anything worse than that insidious fatigue.
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@irenea8 and @maryjanechilds have offered you great advice about getting treated sooner rather than later - having 3 different infections identified in four years mean your body is in a constant fight.
Two of your infections are fungal, and one is bacterial - the treatments are completely different. So, you may very well need to seek out both a pulmonologist well-versed in treating bronchiectasis and an ID doc familiar with MAC & fungal infections in lungs. Here is a lsit of centers of excellence for treating our conditions:
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/
Are any of these accessible to you?