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
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!
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Hi … I was dx in 2015. I was on the meds 3 months and lost 40 lbs. due to ghastly side effects. Changed doctors. Never gone on them again. I had clear sputum culture in April, 2019. Took me 4 years to gain 20 lbs back. I am careful about hand washing, crowds, common sense, and so far so good. I have more issues with bronchiactisis but try too walk daily and stay hydrated. God bless! Jan/Fl.
Liked by Terri Martin, Volunteer Mentor, alleycatkate
Hello Tutti, if you read though our other forum you will see that I was so fearful of the antibiotic treatment that to my regret I did not agree to treatment until I was diagnosed with the second mycobacterium: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES.
This of course required my body to fight off not one but two mycobacteriums now but of course that is exactly why I began writing on the forum .. to let others know NOT to be as fearful as I was .. that it is NOT so bad .. that you will NOT get all the side effects that you hear about! Each persons body is different!
I did the inhaled Amikacin for thirty months for 5x a week and then later for 3x a week as I got better (and whined a LOT to Dr. Aksamit!!) There are a few little tricks to the trade to the inhaled Amikacin so if you are going to be put on it let me know and I will tell you how I did it to try to make it as efficient and least hassle as possible.
I am SOOO glad your Doctor is working with Mayo .. gives me peace of mind. Absolutely two heads are better than one. Now EACH PERSON is different so DO NOT think this is what YOU should do .. but it is what Dr. Aksamit prescribed for my particular situation and MY two mycobacterium:
** 1. Azithromycin 250mg 2. Avelox 400mg 3. 2-Rifampin 300mg 4. Amikacin 2ml – inhaled 5x a week and later 3x a week 5. Ethambutol 800mg
Prior to the start of the antibiotic start I had a “baseline” hearing test and vision test for which I requested a copy so that if I traveled I would have a copy on hand for comparison.
Monthly I did: blood tests
Quarterly I did: vision tests and hearing tests
Tutti, if you have an option .. opt for inhaled Amikacin .. I KNOW I am biased .. but I feel Dr. Aksamit is the Guru of this disease .. and HE said to inhale the Amikacin directly into my LUNGS .. NOT an IV into my whole body!! The abscesses was in my LUNGS .. and that is where the inhaled Amikacin is DIRECTED!! Now I am NOT a doctor .. but I just googled it .. and here is what I found: Conclusion Aerosolized delivery of amikacin is a promising adjunct to standard therapy for pulmonary nontuberculous mycobacterial infections.
AND THAT is directly from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1808062/
As you all know .. I am big on educating yourselves. Do your own due diligence and make up your own mind on this but I’d go for inhaled Amikacin even though it may be a bit more trouble. Personally I did not have any side effects from the Amikacin .. I would just watch TV as I carefully .. fully inhaled.
Any other questions .. just let me know and I will try to answer .. I am back home now until the end of August. Hugs to you! Katherine
My name is Bomar an I've been following these posts an I have Bronchiectasis but know nothing about watching your eye site an getting hearing tests. How does bronc. Affect eyes sn ears
I was recently diagnosed with bronchiectasis as well and I was quite shocked. I have it in several areas of my lungs, but I have had virtually no symptoms until recently – I had slight shortness of breath and oddly enough, since the diagnosis, I feel more tight in my chest. I haven’t had many chest infections throughout my life. I thought that perhaps I was misdiagnosed, but I guess CTs don’t lie? I also have a “possible” mycobacterial infection or colonization but I have to wait several months to see a specialist as my referral to the specialist has been marked “routine”. This doesn’t seem like routine to me. I am concerned that the mycobacterial infection could be further damaging my lungs. Does anyone know if this is possible? I am concerned about the wait to see a specialist. Please help! I feel like this is a life sentence!
Go see a Pulmonologist.
@bomar Hi there. I see that you have just recently joined our group. Welcome. To answer your question about hearing and vision issues; it is the medications to treat mac that can give you those side effects, not the bronchiectasis itself. If you are ever put on the 'Big 3' as we like to call them; then you must have baseline tests done for hearing and vision. Sometimes one of the meds can cause hearing loss or tinnitus (ringing in the ears) another may cause temporary or permanent vision issues. Has your dr discussed putting you on a three antibiotic treatment plan? Most drs like to prescribe that, but there are other alterrnate ways to treat mac. It would depend on the specie of mac you have and the extent of your infection and susceptibility tests. Please scroll down our topic list on the Discussion Board on this group's main page. There you will find LOTS of info from our past posts.
@beatitnow Hello. Did you go off of all meds?
@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).
Gotta laugh. Taking a hint from Daniel Pecaut I recently tried to meditate while the vest was giving me a thumping. Decided to concentrate on Pranayama breathing but my venture promptly tanked in the face of a swarm of thoughts about how to present my experience on this discussion board. As a meditator I’m not yet ready for prime time. 😂
Liked by Terri Martin, Volunteer Mentor, rits
I have bronchiectasis and was on antibiotic treatment but got c diff and can no long use antibiotics is there something else Im 75
@nina1944 – You wouldn't necessarily need an antibiotic for bronchiectasis so you must have had an infection, I'm assuming to be on one. I too have horrible gut reactions to long term antibiotics. There are enzymes and probiotics you can buy to help with that. What is your doctor telling you? Linda Martin
Liked by Colleen Young, Connect Director
I have had infection for a long time was only able to take antibiotics up to 4 a day 3times a week and didn't last 2 weeks till I got the c diff infection back and had to stop the meds. The Infectious Disease Dr wanted to put me on an inhalation medicine and my lung dr said it would make me more sick as the cure is worst than the disease. So I am nebulizing and using vest daily. What brothers me is the no energy and weight loss.
@nina1944 Weight loss and no energy is typical with MAC. I used to tell my doctors that I have no stamina. I am sorry you have dealt with Cdif. That’s harsh. Your doctor who says the “cure is worse than the disease” is quoting what has been said for years. In many ways it is – however, there are new treatments and trials that are coming to the fore. My doctors have had to modify and adjust accordingly and frequently with me as we are all different. I started inhaled Arikayce a month ago. It has not been without side effects. But I finally feel like there is a light at the end of the tunnel in what has been a long five year journey. I would revisit what the ID doctor has suggested. You can not continue with weight loss. There are nutrition people who can help you with that. You can also find helpful diet info on this site. Your pulmonologist and your ID doctor should be working together for your benefit. irene5
Liked by Terri Martin, Volunteer Mentor, rits, poodledoc
What is the side effect of Arikayce? I can't take anymore diahrrea I'm 75 yrs old.
@nina1944 Side effects vary, but I would say the most prevalent and for the most people seem to be scratchy voice and/or loss of voice which come back after stopping it. There are many side effects, but not everyone experiences them. Additionally, practicing “mindfulness as medicine” can help as well. One of the reasons Arikayce is recommended is because of patients who have difficulty with the Big 3 and/or do not achieve negative MAC sputum results. You know your body best. With that said, MAC is progressive for most people. There comes a time when we have to weigh the pros and cons of treatment options. In the research statistics, Arikayce appears to have good outcomes. irene5
Liked by Terri Martin, Volunteer Mentor
I agree with @nina1944 – antibiotics are for an infection…bronchiectasis in itself is not an infection. I find an inhaler helps when I get flares from it…otherwise, eat healthy, get exercise (icluding breathing exercises) and of course, stay Covid free.
I do have infection but meds caused cdiff and I had to stop. Afraid to try anything else. On nebulizer and vest.
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