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charlie999
@charlie999

Posts: 14
Joined: Dec 15, 2017

Alternative (herb) medications

Posted by @charlie999, Jan 11, 2018

Anyone here tried alternative medications for mac? I was on the big three for a short time, but it was wrecking my body. liver still abnormal. I got off and not going back. Maybe try herbal solutions. I rarely ever cough and have no other symptoms. Doc says =according to my ct scans, I have mac=. Appreciate any herbal info/advice. Thanks. Charley

REPLY

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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What do you take?

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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It would be helpful if you could tell us what you use, Susie Thanks,

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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@alleycatkate Hi. Were you able to get an appointment at Mayo?

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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@windwalker Thank you and it is so sweet of you to follow up with me.. I am still at an initial stage and have not gotten diagnosis yet. Had my bronchoscopy yesterday and it is sounding promising. The pulmonologist said he 'did not see anything of great concern'….time will tell when the cultures come back. My initial contact with your group was because the radiologist had suggested MAC from the scan and my GP went along with that. I have my fingers crossed. I wish you the best of health and appreciate greatly you being in touch. It is of comfort knowing if it comes back as MAC that I have the name of a Dr at Mayo that seems more in line with my thinking. I have a huge aversion to pharmaceuticals, usually going the alternative medicine route….but realize that is not adequate for all health situations. Thanks again….Will drop you a line as to my progress. Sincerely, Kate

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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@alleycatkate Hi Kate. I will keep my fingers crossed also that your results come back negative. You are a woman after my own heart in that you are planning ahead (Mayo info) just in case. Please keep us posted and know that we are here for you.

Liked by alleycatkate

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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I have been taken off all antibiotics….

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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Are your sputums clear???

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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@alleucatkate glad to hear the bronchoscopy was good news.  I had bronchiectasis and MaC and never took the cocktail just alternative Med and the MAC is gone . The results of my last bronchoscopy!  Make sure you are well diagnos!

Liked by alleycatkate

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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@nick52 Thanks so much for your kind response. Not sure yet what is going on and need to get my results back from the cultures but it is sounding promising. Wow! That is amazing that you had the tenacity to follow your instincts and not take any of the cocktail. And so incredible that you eliminated MAC with alternative measures. I would love to hear what you did. I actually get upset when i have to take a 10 day course of antibiotics so I am always interested in finding how others navigate their health situations circumventing traditional medicine. Thanks again for taking the time to write.

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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@sophie1019 Hi Sophie. Were you taken off the meds because the mac has been cleared or were they intolerable?

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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@sophie1019 I just read back over your previous posts. I am guessing you were taken off the cicktail due to intolerance. What's next for you? My doctor put me on a rotating monthly antibiotic that wasn't those harsh ones and it seems to work for me. There is also inhaled cipro now available. Do you have a copy of your suseptability test?

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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I tolerated the med very well. Besides talking oral meds, for nearly two years, I was on an iv drip from Oct 2017 just ending thursday this week. The doc stated that I still have a small cavity in my lung, BUT since I haven't been sick from mac for nearly two years, I am still working and exercising regularly, she ( the I'd doc) aND my pulmonary doc decided to take me off. Please pray for me as I do for you and all others on this forum.. the I'd doc told me if I started feeling bad to get on touch with her asap. I also took a CT scan but I don't have any results yet…

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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@irene5…..when do you go to NJH.?terrid

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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In the process of being referred from ID and then getting an appointment. I will let you know when I know. 

@windwalker

@charlie999 , Hello Charlie. I was diagnosed in 2005 with MAC and bronchiectasis. I opted to not go the route of the three strong antibiotic regimen due to worrieksonvile. s of harming my liver. I have been on an ongoing treatment over the last 5 yrs of using one a month. I take the antibiotic for 10 days each month and the antibiotics are alternated each month as to not build up a resistance to them. The two antibiotics used were doxycycline and ciprofloxacin. I did those two for three yrs. until I caught a. psudomonas. Then, the doxycycline was swithed to tobramycin. So far so good. I have not coughed in years, whereas, I used to cough non-stop and violently. The doctor that put me on this regimen is at the Mayo Clinic in JAX.

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Definitely will keep you in my thoughts and prayers. Thank you for keeping us in yours.

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