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onana (@onana)

about to begin treatment for MAC

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

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@macjane

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?

Thanks,

Jane

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Replies to "Terri, I have just returned a few days ago from seeing my Pulmonary/Critical Care doctor. Two..."

@macjane Gosh Jane, that is aweful that you have felt bad every day since February. If you can get into Mayo clinic to be seen; I definitely would because you are dealing with two diseases that can be difficult to treat properly. From what I read yesterday from a Mayo Moderator, the Mayo in Rochester is the one you would want to go to because of your Sarcoidosis issue. They have good specialists there for that. My cousin has sarcoids and she said the fatigue is just unrelenting. Do you know if your sarcoids is actively back? Are there new tumors or any at all? Sending you a great big cyber hug Jane.

@macjane I also wanted to mention that the swing in body temperature is common with both mac and/or pseudomonas. I had a pseudomonas infection in the spring of 2016. With that, I was hot & cold throughout the nights and lost 27 lbs.