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
@kristiemlove …Thanks a million for your information on this alternative approach. I was very thankful to read your posting. Please keep us up to date on your mom's progress. Does she plan to continue her routine for a period of time? Your mom is a brave and determined pioneer!! Kudos to her and her free spirit. Big pharma would not appreciate her 20 cent approach…but I sure do! What does she feel about Brag's apple cider vinegar? A cleanser? Kate
Liked by heathert, Dee
Thanks for your reply, I am not sure what to do at this point as I only have 1 small section on each side of my lung that they say is bronchiectasis. My lung function was almost normal, and I am doing another CAT scan. Besides trying to build up my immunity with garlic and tumeric pills, I was told to come back in 4-6 months. I am not coughing at all, never really did. Should I just maintain a healthy diet, exercise and building up my immunity? go to mayo clinic? wait till I get an actual infection? I am waiting for the results of my alpha-? blood test, too. Thanks for any help you can throw my way. Mary
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@mmteach Hello and welcome to our group! I agree with @lauralynn in checking with your Dr about lung clearance support. I was diagnosed with MAC and bronchiectasis last year. My Dr at Mayo seemed to think that my bronchiectasis could possibly date back to childhood. Both of my issues are mild so there is nothing to do but monitor them at this time. It sounds like you are at the initial point in diagnostics but also that you might have a mild case also with no symptoms. The things that my Dr wants me to do are to be sure my acid reflux is under control as it can aspirate into the lungs. (be sure that you do not have silent acid reflux and are not aware of it) Also to keep healthy (I keep a clean diet and do supplements to reinforce my immune system) I am to follow up yearly with an xray and sputum to stay on top of my situation and do airway clearance. (nebulize saline and usage of an acapella when I feel gunky) He suggests having an antibiotic on hand (one that is not one of the big 3) for any flare ups. And Excercise! So far, so good. Hope you stay healthy and your diagnosis does not present a problem for you. You sound like you have a concerned Doctor! Best wishes….Kate
Liked by Dee, Terri Martin, Volunteer Mentor
Since I was a child, she has always done apple cider vinegar. Especially if somebody was sick, she would double up on it, but she never could get me to drink it. Until now. With the stevia. ACV has always been her go-to for everything, and I never remember my mom ever really being sick. She never got colds or the flu….to which she gives vinegar full credit. There are lots of books and articles on the subject.
Liked by Dee, Terri Martin, Volunteer Mentor, alleycatkate
@kristiemlove …Thank you!!!
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It’s a shock really. I am 55 years old, and my mother died from this. I am having a hard time putting this into perspective, as I have seen the worst of this condition. It’s hard not to look at this a death sentence. I am grateful that I don’t have symptoms yet, but it’s difficult trying to find a doctor that specializes in this that is also in my insurance network.
@mmteach Hello. My mom died from lung disease at the age 58. How old was your mom when she passed? Can you share more about how the disease took her down? Do you think she may have had worse bugs than mac going on in her lungs?
@mtmteach, I am happy to hear that you are catching this disease in the early stages. Your dr is right, avoid ill people, and wash your hands immediately after being in public places to avoid picking up germs that cause colds and flues. AVOID hot tubs, and indoor swimming pools! They can be loaded with mac. Wish I had known that. We had a hot tub for years and were in it every night…..pretty sure that is where I got my mac infection. I wish my drs that diagnosed with bronchiectasis many years back had said "Don't get into hot tubs", but they didn't.
@windwalker same with me, they said nothing about hottubs, wish they had.
@windwalker … My daughter has a pool in Fl that is in an enclosed open screened area. Is that a No No? 😢
@janovr, Being screened in means that you are still getting fresh outdoor air around your daughter's pool, so it is not considered an indoor pool. It gets hot in Florida and can make outdoor pool water warm. Mac likes warm water. Being a private pool lessens the chance of it having a lot of mac in it. NIH did a study on contaminated pools and found that most indoor or outdoor pools had some level of mac in them. The pools that tend to have the most mac in them are high traffic public pools & indoor pools. Mac tends to colonize in warm pool water. That is why the indoor pools tend to have a higher count. I rarely get into pools. When I do, it is for a quick fanny dunk to cool off. I only do that if the water looks really clean and clear and I keep my head high out of the water. Some members on our site are very ill and are having a tough time battling their mac. In that instance, I would avoid a pool like the plague.
Liked by Paula_MAC-2007, janovr, Dee
@windwalker thank you for the reply. YAY, I can just do a fanny dunk and be happy to join the fun! 😀
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.
@kristiemlove It's been a while since you posted this about your mom but it was so exceptional I saved it! Need to ask: for what was she having the VATS procedure?
@heathert Me too.
Hi everyone. Does anyone know what happens if you go off the antibiotics all together? I have been on antibiotics for 3 years and still have MAI. With diet and exercise do you think it could stay under control? Has anyone heard of anyone doing this? Thank you!
@beatitnow I answered you under the Arikayce topic where you also posted.
hello Sue, pls how do I see post under Arikayce
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