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MAC & Bronchiectasis | Last Active: May 23, 2018 | Replies (20)

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@jkiemen

OMG. That is allot to go through. That is how my MAC was found. Pneumonia, Spot and Biopsy. Please ask them to check you Immune Globulins and Vitamin D levels. Have they tried the every other day dosing or switched rifampin and to rifabutin or vice versa. Tried Clarithromycin instead of Azithromycin. I think Tyler Texas is a good place to go. I would have your MD personally call to get you in sooner. I heard they might be involved in some research on new treatments, otherwise Jewish National or Mayo Clinic.They need to do a sensitivity on the sputum. There is also Linzeloid to try.

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Replies to "OMG. That is allot to go through. That is how my MAC was found. Pneumonia, Spot..."

I just had immunoglobulins done and IgG is low, so doc recommended I go to immunologists and look at getting "replacement" (IV infusion ). Has anyone else had that done? Hospital is still doing susceptibility testing on the MAC they've grown from my lungs from bronchoscopy on April 4 . I'm going to start mechanical airway clearance in meantime--salt nebs, saline nasal rinse . The blockages in lungs are pretty localized to a couple of places . Ive had symptoms for 10 years but they were worried re malignancies until now, bc I have had two, and both can metastasize to lungs . Now they've biopsied and ruled that out, laid that worry to rest and are focusing on MAC.,

@jkiemen My allergist doctor did labs to check my immune system and he said it is all normal. My primary checked my b12 and vitamin d levels last week, both of which are extremely low.. So taking vitamin d daily and started b12 injections.. we have tried every other day and changing and I am sensitive to it all 🙁 I was landing in the hospital every time and having MRI on my brain and the whole she bang. I will call my pulmonary and see if they can get me in sooner, still haven't been called to set an appt date

@cowgirlmt Hi Kimmy. How are you doing today? I know you are going through a very tough time right now. You are in my thoughts and prayers every day. -Terri

@windwalker Good morning! I am doing ok, just exhausted. I could easily fall asleep at work haha.. I am exhuasted but can't sleep:/ They put me on a couple new medications however not noticing a difference.

@cowgirlmt I know it is hard. I remember dragging my exhausted body into work every day. It was horrible.