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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Jan 19 10:15pm | Replies (9355)Comment receiving replies
Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.
Replies to "Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I..."
@heathert, You are so very welcome. I appreciate that you (and others) are regulars on here. You ALL are part the success here that makes this a great community. You all are so good about catching newcomers that I miss and add good input with the information. I keep hoping that our conversations change to NEW therapies that work, or I AM CURED forever!! I pray that stem cell therapy gets to the point where we can reverse the damage of bronchiectasis. I am thinking of going to the World NTM conference in D.C. again this July to see if any new info is out there. -Terri
@windwalker Oh I AM CURED FOREVER would be wonderful as we would all be cured on here, hope I see the day soon! Let us know how the NTM confrence in D.C. goes, fingers crossed.
@colleenyoung i totally agree with you Colleen. Gaelawree brought joy and light to this group! Speaking about her passion was Thanks for understanding that we are more than our disease!
@windwalker Hi Terrie, ya it’s actually going to be easy for me since my son has a inversion table I can use. An adjustable bed would be helpful or get a piece of plywood & create a slated surface.
@windwalker Thanks Terri, yes I wonder why too. Doesn’t make sense to me why I have this.
@nick52 thanks Nick & Colleen
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So true...