← Return to about to begin treatment for MAC

onana (@onana)

about to begin treatment for MAC

MAC & Bronchiectasis | Last Active: Nov 3, 2018 | Replies (24)

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@onano, Together we are stronger! Knowing that we are not alone makes this disease a lot less scarier.

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Replies to "@onano, Together we are stronger! Knowing that we are not alone makes this disease a lot..."

Terri, I have just returned a few days ago from seeing my Pulmonary/Critical Care doctor. Two years ago I was diagnosed with MAC as we have discussed in the past. Suddenly after getting so sick on one on the antibiotics, treatment stopped yet since February of this year, I am sure, the MAC is having some effect on me. Fever and chills, nausea, headache, so little sleep and the fatigue overwhelming. I lost 40 lbs much too rapidly. Ironically, I go from shaking so badly from chills to heat that feels like 110. What we started to do was to take morning and afternoon temps. I go from 96.4 to 99.8. The normal is 97.6 so when I had what was severe sarcoidosis 30 years ago, I was only at 102-103. I bring up sarcoid only because despite all the symptoms of the MAC, I was told I was looking at sarcoid. The temp readings just started and I am sure the fevers have been higher. I am doubled over with pain at times and really weak. When I talked with Pulmonary Doctor, I told him that there has been no day that I haven't felt sick since February. After months I was told that symptoms could be related to my esophagus or diverticulitis. I was so sick at times that I never got on computer. I find it so hard to read that I was off computer but hearing the doctor say we stopped any treatment for MAC because I reacted to meds. I tried to get in pool twice to walk in Spring but basically collapsed after the gross fatigue that continues to this day. I was told yesterday by a physical therapist that works specifically with people with colon problems. She had never heard of MAC but feels I need to contact Mayo about MAC. Have you ever heard of anyone being treated for MAC after diagnosis and then just stopped?