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Starting MAC treatment with "big three" drugs: What to expect?
MAC & Bronchiectasis | Last Active: May 8 5:56pm | Replies (192)Comment receiving replies
If you have a Facebook account you could join the group Lung Matters: Covid, Bronchiectasis, MAC, NTM, Nocardia, Pseudomonas & More. Kelly Kats has created many guides for people like us who are trying to help ourselves with everyday Airway Clearance and Precautions. I have learned so much since joining.
Replies to "If you have a Facebook account you could join the group Lung Matters: Covid, Bronchiectasis, MAC,..."
I also learned a lot from that site, but got off the site because of some troubling things. KellyKats makes some over the too summaries of research articles For example!; "Gluten is a opioid.." When you read the research that she sites that broad statement is incorrect. Other concerns; How can someone with as many serious illnesses as she has spend so much time responding to posts? I know how much time it takes me and I have fewer ailments than she claims to have... Everyone on the site has a user name but their real name is also revealed for all to see. Only name revealed fir her is KellyKats and no profile picture so no way to check if this is a real person.
There are some very sick people in the group and I miss communicating with them , but got off the group because if the unknown about KellyKats that I was unable to verify...
@coco1970 @raney @bestselfever
Being chronically curious, and seeking answers to the puzzles that are MAC, Bronchiectasis and related conditions, I am always looking for other reliable, science and research based resources for learning. So, I jumped in, joined the suggested group, went through the required steps for membership, and began reading.
Here are my observations, take them for what they are worth:
The posts and guides are a compendium of extracts, some without the source cited, excerpts from and/or references to self-published materials by the blog owner, and factually unsupported theories.
There are many interesting posts and questions, but in many cases quite typical blog post answers, without much support behind them.
The blog owner appears biased against antibiotic treatment, rather than offering a more balanced approach, wherein you try everything you can to stay healthy including antibiotics where indicated.
There is a strong emphasis on airway clearance, which is well-supported by evidence.
And here is what I plan to do:
Read it for a few weeks to see if there is good information to be learned.
Take any suggestions I find and run them through my "personal filter" - to find out whether they are supported by science and research, or are they anecdotal.
Continue to rely on Mayo Connect and NJH for my MAC, NTM and Bronchiectasis information.
What is your takeaway on the the page?
Sue
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I’ve seen the FB pages but … not keen on them. Thank you, though. Very thoughtful.