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DiscussionQuestions to ask at your first appointment after diagnosis
MAC & Bronchiectasis | Last Active: Jan 1, 2021 | Replies (23)Comment receiving replies
Replies to "I admire your chutzpah!!! What's the diagnosis from the Rheumatologist? How long have you been on..."
Ellen, I have been on the cocktail of 3 for one month....and doing great! I was terrified to start the regimen because my doctors & pharmacist scared me with pessimistic tolerance for the drugs and high dosages; however I felt I “had to toughen up and try”. I truly believe my diet has saved me the ill effects...I have always taken pre/probiotics, lots of fermented foods, no dairy, meats etc. I take Azithromycin & Ethambutol in am one hour before coffee..and Rifampin 2-3 hours after a very light dinner...no problems whatsoever. I’m thrilled. I only pray these meds do the trick...I don’t produce any (absolutely none) sputum...so unless that changes...I assume I will have to wait till my next Bronchoscopy to verify success.
Thank you Ellen for the lovely compliment. This I also wanted to share with our new friend Echo R...although the Rheumatoid Factor level is unimpressive (not positive) that does not mean that one is absent “issues of a rheumatoid nature”...other immunologic numbers count too; CCP (anti CCP antibodies) are autoantibodies....antibodies attack virus/bacteria in the body...autoantibodies attack our healthy cells...as seen in autoimmune disorders. So, my ANA was positive, my CCP very high and a couple other measures in immune panel...but my RA was negative...but my Rheumatologist believes that I do have RA flares and that my lifestyle modification keeps me “atypical” in presentation. My joints are still great, although I have aches and pains like most 60 something do. My Rheumatologist believes I can ward off additional meds until my quality of life calls for RX. My Pulmo said he has heard of my chest discomfort with Rheumatoid patients that get MAC...but that it is not necessarily symptomatic of MAC...but many in this forum have shared that they also have chest pains and discomfort.
(Question: when we click reply...does the group see the post? Do I need to write Echo separately?)
Still Learning.
CMI (btw All....my name is Regina)