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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hi @windwalker my first name is English, and I'm a PA in dermatology although I worked in the Emergency Department enough years:) Thats exciting about the new inhaled drug. I wonder - I have been on Adavir (steroid + dilator) since it came about about 20 years ago - between that kicking my immunity down over time, I got very sick at the end of my second pregnancy, I got post flu pneumonia Jan 2015, got separated from an awful marriage and the resulting trauma/drama/intense stress of getting out of/away from that, I suppose in many ways its not shocking this happened? I have not come across the posts on getting reinfected - if you know just where they are sharing would be great - that said I can dig. I have a small bronchiectasis and hope to keep it that way. I found an ebook called "Beating bronchiectasis" by Daniel Pecaut. He is where I got the acupuncture idea - he doesn't have MAC - but who knows which one comes first?
Thanks @ginak @ginak , yes skin I think is even less common and unrelated to lungs from what I gather.
Does anyone else have any consistent favorite reading sources?
Thanks for the warm welcome!
Replies to "Hi @windwalker my first name is English, and I'm a PA in dermatology although I worked..."
@ncgirl 'English' is different. How did your mom come by that name? Family name?
Re-infection: if you Google 'mac re-infection'. Re-infection can happen from your own drinking water (it sticks to your pipes), hot water tanks are full of it - need to turn the temp up to 131 degrees to kill it (I would be apprehensive to do that if I had small children in the home, that can scold, maybe at 125). Potting soil is full of bad mycobacteriums, as is outdoor soils (wear a mask if gardening). Avoid swimming pools, hot tubs, steam, hospitals, and nursing homes. Take a bath instead of a shower. These bacterias travel best in steam and vapor. I suggest that you learn ALL that you can about this. Since you do not have these diseases bad right now, you should try to keep it that way. I wish I had known what I know now, and perhaps I would not be in such bad shape.
This is a serious disease, please take it seriously. Good places to learn more about this is on Youtube. Google 'NTM conferences'. National Jewish Health has good videos. Just Google, Google, Google! I would suggest that you either keep a notebook just for bronchiecstasis/mac or start one on your computer (copy & paste) and start compiling notes that you find helpful. Make categories/sections in it. I keep a real one on my desk so that I can access info quickly when responding to our members, or keep up with what members are going through at the moment, or jog notes on what to look up if someone posts a weird diagnosis etc. I have categories of lists of probiotics, new meds and treatments, etc.
Try not to let this disease frighten you. You can live a quality life with it; it just requires extra caution. Hugs - Terri
@ncgirl Hi English. I had used acupuncture in the past and found it extremely helpful. I tried a guy here in my little town (the only guy in town) and was not impressed with him. I found that 'cupping' is very beneficial. Have you ever had that done?
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Hi @ncgirl I also read the Beating Bronch book and am trying to do alot of the suggestions, it is a great book, I wish someone out there with MAC had written a book like that also!