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pejohnston (@pejohnston)

Long-term Antibiotics for Bronchiectasis & MAC

MAC & Bronchiectasis | Last Active: Aug 14, 2020 | Replies (164)

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@windwalker

@pejohnston , Hello, and welcome to the Connect community. Do you have a a first name that you would like to use? To answer your question about long term antibiotics; you will see that many of our members are on a long term regimine. Most that are taking antibiotics are taking the 'Big 3' cocktail. People usually are on them anywhere from 18 months to 3 years. I am on a different kind of ongoing regimine. I have been taking alternating singular antibiotics on alternating months. I have been doing this since 2013. It is known as a prophylactic approach. My doctor explained that he liked this approach because it is more tolerable for the organs and prevents the mac from becoming resistant to the antibiotics.

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Replies to "@pejohnston , Hello, and welcome to the Connect community. Do you have a a first name..."

@colleenyoung thank you

@lauriefrancis , Hi Laurie. I am sure you are feeling aggrevated while dealing with bureaucracy in the Canadian health care sysrem. You may want to look into traveling to the U.S. and bringing her to the Mayo Clinic. People worldwide come to their clinics because they are known for their Gold Standard care. They have an International relations office that can help you with insurance, etc. They work with you as far as payment goes if you have to pay out of pocket. They are a non-profit research hospital. If you want to send your mom down to the Jacksonville, Florida clinic, I'd be happy to meet her there and get her to her appointments, etc. Rochester, Minnesota may be closer for you. They have a clinic there, and also in Phoenix. Their websites are easy to get around in and find the International intake office. Let me know if you need or want help with that.

You're very welcome, Laurie. I'm glad that I was able to connect you with fellow Canadians.
While some information is better shared by private message, I would also like to remind everyone of the benefit of sharing in the forum. By posting in the discussions in the MAC group you benefit from the knowledge and experience of many. In fact it was by sharing in the group that I was able to connect you with other Canadians. That's the beauty of online communities like this one. 🙂

@colleenyoung yes I do appreciate that very much. I will keep that in mind.

@lauriefrancis Hi. Just checking in. Did your mom's doctors figure out what was causing her stomache issues?

@irene5 Hi Irene! Have you been able to gain back SOME weight at all? Do you feel like you are doing any better?

@lauriefrancis That makes me so angry that doctors don't explain much about a disease. I was told 15 yrs ago that I had bronchiectasis, but not a peep about how to take care of it or how serious it can be. It wasn't until I started going to the Mayo Clinic that my condition was thoroughly explained and properly treated. If there is any way to get her to the Mayo in Rochester, Mn. I'd do so. I know she needs her passport, etc. It sounds like they do not know much about it up your way.

Hi flib
Good to hear your report. I'm not much younger than you, have had bronchiectasis 24 years & MAC which probably started during the last 10 – now with seemingly chronic sweats – AM &/or during the day. I go out to do errands & a volunteer shift in a garden (the outdoors! the outdoors!) despite that. I've read so much about the benefits of salt for lungs e.g. how salt miners in Eastern Europe not only didn't contract pulmonary ailments as miners normally do over time, but had healthier lungs than everyone else. I've postponed using nebulized salt solution because I've been on a homeopathic protocol & assumed (!) it wouldn't b good idea to do both at same time. I'm now motivated to find out, thanks to your reminder. – I think I'm alessandre on this site & think healing on inspire (site).

My VA doctors dropped me from treatment because I lost so much weight they said I was trying to starve myself to death! But then the pulmonary doctor took me off of the antibiotics and I was able to metabolize food again. How ever now he will not treat me at all. He said I am cured after 4 months of treatment. I am not…It is getting worse and I do not know what to do.

@adoniah…We're all glad you found the group. many of us have similar troubles with doctors. Don't get discouraged. There are many alternative treatments. Please read the previous posts for many suggestions.It would help us help you if we know whether your doctors are basing "no more treatment" on sputum samples, bronchoscopies, CT scans, susceptibility studies, or just "we don't know what else to do".
When my Infectious disease doctor said, "we don't treat candida", when both of my lungs were completely full of it, I turned to the internet and Candida Cleanse. Next bronchoscopy showed it worked.
Don't get discouraged. The site has many caring people who will help you.

@adoniah sorry for a late response we were in Maine for the long weekend. I would say to you that you can get good result with natural products.  I could tell you to start by takeing something to clear your lungs with Clear Lungs the blue bottle but I prefer

to guide you by consulting a Natural Store product (Health and Wellness) and explain all your synptom and they will guide you.  You can call this number and ask for Sara  

http://Www.NaruraAlernatives.biz  847-697-0212 .  It is better to consult a specialist since you will be given what is necessary for your symptom.  I have never taken antibiotic for MAC only natural products and I am

now Asymptomatic. You can good result from it! Good luck! I will keep you in my prayers for you to be guided in the right path! Nick

What exactly is your med regime?

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