Mayo Clinic Connect
I was recently diagnosed with Bronchiectasis. No symptoms yet just starting different tests- another CAT scan, pulminary function test, and possible bronchoscopy. Any advice/suggestions would be greaty appreciated. Thank you!
Liked by Dee, adair, crepass
@beatitnow Hi Amy, I was on the big 3 for 2 years, 3 days a week with no results. My dr changed me to daily big 3 and inhaled Amakacin and it worked to close my cavities and get rid of the nodules, but some nodules have returned after stopping the Amakacin. Good luck
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@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!! 🙂
Liked by Dee
@beatitnow I am not sure as I was no good at sputum collections, I had a bronch a year after starting Amakacin and it was all clear however I stopped the Amikacin and within 6 mths the nodules appeared so I had another Bronch and it came back clear for any bugs. Very strange. I have another scan in a few months, who knows what that will bring. I am in New Zealand.
Liked by Dee, Terri Martin, Volunteer Mentor
Hi @beatitnow…Did you have any problems or side effects with the Amikacin???
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!
@beatitnow, Hi there, just wanted to tell you that there are other treatment options out there besides the Big 3. You can click on my picture and read about my antibiotic regimen. Of course, it would depend on your suseptibility test. Plus, there are inhalables available now. Chances are, your mac has become or is resistant to your meds. Have you had a recent suseptibility test? Are you doing twice daily nebulized saline?
Liked by heathert, Dee
@beatitnow Another form of treatment is having regular brochial washes done. That is where you go in for a brochioscope and they flush some saline through your lung and suck it back out. I do know of several people that got better that way.
Liked by heathert, Dee, alleycatkate, gaylewroc
@windwalker Terri, I found a book on Amazon called "Beating Bronchiectasis", by Daniel Pecaut. He went all out changing diet, exercising and one interesting treatment..nebulizing L-Glutathione which is an anti-oxidant. He was treated at Mayo in Minnesota and his doctors knew he was nebulizing and didn't tell him not to, so I have been doing also. I admit I probably would be better if I was nebulizing twice a day but truth is I hate if….and put it off, and sometimes it's days before I do it. It just hurts, and I feel like I'm going to pass out no matter what is in the nebulizer!!! But that is a good treatment for people to try for sure!! And get the book on Amazon..it's cheap!!
Currently with my infection I have been without antibiotics until 2 days ago, so I have been nebulizing Colloidal Silver. I was careful to get a brand recommended by a local Herbalist. I think it has been helping, but I need to use it more. I have read that people use the silver along with their regular medical treatment and they don't have adverse reaction. But research….MAC and Colloidal Silver. You won't turn blue!!! Silver Shield by Nature's Sunshine (broad spectrum immune support).
Liked by Dee, Terri Martin, Volunteer Mentor, kristiemlove
@beatitnow Hi! This disease is rare and there is really nothing specific to treat it. Maybe Amikacin…but it is relatively new. I have heard that most people that take the big 3 only keep the disease at bay..and after they stop it starts to progress. That has happened to me. My Doc has had me on random courses of Clarithromycin just to calm down flares. Not a good way to live.
I did research on the bacteria, and of course the bacteria is stuck in the bronchiectasis pockets. The bacteria is supposed to have a hard outer shell making it hard to get anything inside and kill it. Also, the way the bronchiectasis is spread throughout the lungs, the blood supply doesn't really get into that damaged tissue. So drugs in your bloodstream are not very effective and..the inhaled kind is not always going to get in those pockets.It's just a frustrating situation!!!! My ID doc wanted to put me on IV Amikacin but I was not happy about that at all. I'd rather at least try the inhaled kind.
As far as vitamins..some are water soluable. So your body flushes them out pretty quickly when you pee.That's probably why Katherine said to take every 4 hours. Some are fat soluable and those will stay in longer.
@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?
Six weeks ago, my mom had a VATS procedure. She had been so sick since September relying on prednisone and oxygen, they had no other choice. Three days later, she developed pneumonia followed by pneumothorax. It was at this time she started nebulizing colloidal silver. She does it every other day, along with drinking Bragg's Apple Cider Vinegar daily. She has now been completely off the prednisone and oxygen for 2 weeks, and her improvement is nothing short of remarkable. She is back in the gym 4 days a week. Her doctor's cannot even believe it is the same patient. They literally said 'you could not twist my arm to treat you; keep doing exactly what you're doing!' Maybe it's coincidence, maybe not, but 5 weeks ago we didn't think my mom was going to make it. In addition, my father got the flu and an awful cough a couple weeks ago. She insisted on sleeping with him to take care of him. She didn't get a thing!
She is still scheduled to go to Tyler on March 6 for her first appointment since the MAC was confirmed two weeks ago.
Liked by Dee, pfists, alleycatkate
That's amazing news about your moms improvement!!
I use colloidal silver but haven't inhaled it yet. Please keep us informed here of your moms progress.
It is so great to hear this good news.
Liked by Dee, kristiemlove
@kristiemlove Could you tell us what dosage your mom took of colloidal silver and how often. Thanks, Flib
@kristiemlove … just short of miraculous!! I am so happy for your mom and for you! I am also thrilled to hear that about the colloidal silver. I have nebulized a couple of times after getting a cold this year to insure i dont get bronchitis or pneumonia. So far so good. I have been hesitant to use for any extended period of time but your info is comforting. I have always used it internally with huge success for infection. Glad to hear of your mom’s results and So very happy that she is doing so well. I am gobsmacked! Kate
She is doing 1 tsp every OTHER day……and the vinegar. I have come up with my own cocktail of 1 TBSP Bragg's vinegar, 3 oz. water, and a heaping spoonful of stevia. It is delicious! @flib @alleycatkate @pfists
@alleycatkate likewise, she has always used it for infection with excellent results. She is not back to 100% but pretty close. We know this is a lifelong condition, but she went from being SO BAD we all felt it had to be more than "just" MAC and bronchiectasis to SO GOOD. I know it's not for everybody, and she has been using it on a trial basis, but when the doctors gave her the green light last week, we are feeling hopeful.
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