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Tue, Feb 12 9:29pm · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

@gaylewroc…Hi! Thank you for your responses.

I am doing the nebulize glutathione also. Do you inhale through mouthpiece or a mask? I don't feel anything when my glutathione hits my mouth. I am wondering if my prescription is off, or if I am not doing something right. I remember in Dan's book he says that his bubbled over the first couple times. I have no idea what could be bubbling. I just pour the pre-proportion vial into the machine with like .3% saline solution. Can you tell me what you do? Also, are you seeing Dr. Daenell, the Denver naturopath that Dan saw? I am.

Also, as far as taking the vitamins, Kate had mentioned taking them 4 hours apart from the antibiotics. I have not been doing that and I wondered if that could have been affecting the potency of the antibiotics? Also, my doctor said it was okay for me to drink coffee in the morning when I took my Rifampin, so I have been. What I didn't realize until a couple weeks ago, is that I was putting coconut milk in my coffee, and I probably should have been having it black so it didn't interfere with the antibiotics. Do you have any thoughts on that?

Tue, Feb 12 1:56pm · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

1) Hi @gaylewroc. I was never on Amikacin. I have just been on Rifampin, Clarithromycn, and Ethambutol for almost two years without success. I forget, what was your story? Were you on Amikacin? If so, what have been your results? Has it come back?

2). Also to the group, and @katemn, Katherine mentioned taking vitamins 4 hours apart. I was told by my lung doc it didn't matter what time I took the vitamins. Does anyone else and/or Katherine have any more advice about this. I guess I am wondering if that is why my antibiotics have not worked to kill the bacteria? I would love to hear from you if you would. Thank you for any and all help!

3) To all and @katemn, what do people know about people who have been on the antibiotics without success, and then decided to stop taking them? This is one option for me, because I am seeing the Naturopathic doctor in Denver who can give me other support to hopefully heal my system. It is all a risk though. I would love to hear what people have heard about people who go off the antibiotics because they were not successful. Thank you SO much if you can give me your feedback!

Sat, Feb 9 7:55pm · Any good results from taking Amikacin?? and what were side effects? in MAC & Bronchiectasis

@gaylewroc…sorry, I guess I was thinking there was another individual that had success with Amikacin, but I guess all of my question above goes to @heathert. I hope all goes well with what you choose. Please let us know how you do with whatever you try. Thank you!

Sat, Feb 9 4:40pm · Any good results from taking Amikacin?? and what were side effects? in MAC & Bronchiectasis

@gaylewroc So, why are you convinced that it will return? Do you know length of time that usually passes before it returns? Is Amikacin an inhaled antibiotic? Did you still take the other Big 3 along with the Amikacin? Thanks for your help. (I have been on the Big 3 for almost 2 years now, and no clear sputum sample yet.)

@heathert How long did you take Amakicin? And, you just got nodules after 6 months, but no mycobacterium infection yet? Thank you for your help! 🙂

Tue, Feb 5 8:59pm · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

@heathert So, did you get rid of your infection? If so, how long did it take for it to go away? So, what are you doing about your nodules now? What doctor and area do you see? Thank you so much for your response!! 🙂

Tue, Feb 5 12:35pm · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

@colleenyoung and the Rest of the Group!

Hi, my name is Amy. I am currently 48 years old. I have been on the 3 big antibiotics (Clarithromycin, Ethambutol, Rifampin) for almost two years now. My last sputum sample was Dec 19th, 2018 and I was just told that it was positive again. I was wondering if anyone else has done anything if there meds were not helping? I was very interested in what @lauralynn said about her clinical trials where she cleared her NTM after 6 years, plus of being on meds. Does anyone know what drug she inhaled, or any other drug to inhale that will help this go away? I also may need to look to switch my doctors. I live in Caseyville, Illinios, outside of St. Louis by 30 minutes. Thank you for any help anyone is able to give.

Jun 17, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi everyone! I have not written in a while, nor been on to review comments. My name was BEATITNOW, I'm not sure if I'm still a "part" of the group with my name coming up. I have been on the Clarithromycin, Ethambutol, and Rifampin for about 13-14 months now…and I still have at least another year. I am ready to take my sputum sample next week to see if the infection is gone. But, MY QUESTION IS….have any of you felt slightly "weird" sensations through your body in taking the meds? Like sometimes it's like there is a bug on/ under your skin for just a couple seconds and then it goes away. Or, sometimes it is like a slight bit of pins and needles on a very small area. This will go on through out the whole body randomly and just every so often. Has anyone experienced anything similar or have any suggestions? I need to get in touch with my doctor on Monday, but I wasn't sure if this was something to try to stop taking the meds for a period to see if it would resolve. Thanks for any help or suggestions you can give!

Jul 14, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi everyone. I have not written in a while. I have been in the process of moving for the last 6 weeks. I’m currently staying at my parent’s house until we move into our house on Aug15! (And, yes, @katemn, we ended up buying a standing house instead of building…thank you for your advice.).

As a reminder, I have MAI and bronchiectasis, and I have been on the 3 meds for 4 months now. My parent’s have a chlorinated pool in the back yard which is very nice. I have not swam in the pool yet because I wasn’t quite sure if this brought more of a risk of getting further bacteria. I know there was a thread one time about chlorinated pools, but I did not get a chance to follow the conversation. Does anyone have anything saved in their “file cabinet” about the pool topic, or any information you can contribute would be great!

Also, if there was any information about whether salt water pools are any safer? The house we bought has a pool, so I am going to have to research this. Thank you for any help you can provide!

Amy