1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

nick52 | @nick52 | Jul 4, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

@windwalker Teri I always use colloidal silver on my skin to heal and it heals very fast. If you need to heal a burns on your skin it sure does the job fast! Nick!

REPLY
nick52 | @nick52 | Jul 4, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

@boomerexpert you are using CBD for your arthritis pain right? Nick

REPLY
pfists | @pfists | Jul 4, 2018
In reply to @pfists "Regarding coliadial silver My naturalpathic Dr put me on it, so he must believe there is..." + (show)
@pfists

Regarding coliadial silver
My naturalpathic Dr put me on it, so he must believe there is some merit. Mayo clinic doctors have sent him patients they haven't been able to help.
I have read up on its use quite a bit on and know it was used extensively before antibiotics and they still use it for burn patients There won't be extensive testing on it unless big pharma figures out how to make it into a drug for profit.
I don't think it alone has helped me or if it helped me at all. I always took a pretty small amount. I do know there was a problem with silver salts and all acumillating and causing blueish color.
But saying all that I wouldn't be comfortable nebulizing at all until research was done on it. There could be contaminates in the solution or something. I'm pretty careful about what I inhale avoid dust, scents smoke. I know that when bacteria comes in contract with silver from what I have read can't exist and it doesn't become resistant to colidal silver.
But I have an open mind and will keep researching.
Thanks for your concern!
Shari

Jump to this post

@windwalker
Yes Terri silver was put in babies eyes. Its very good for cuts and burns. I put a gash in my arm the other day first thing I grabbed wad the colloidal silver
Hydrogyn peroxide is too harsh on wounds.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

@america, Hello, and welcome to our group. I am so glad that you found us. As you read through older posts, you will learn alot about the disease we all share. I'd like to explain some of the ins & outs of using this site. When responding to someone else's post; please begin your text with @whoeversname at the start of your post, like I did on this post to you. That way your message will get to the person you are talking to. This is an open forum, so all are free to read your texts and also jump into the conversation as you have already seen. If a conversation appears to be just between two people; most are considerate and grant you some personal space. Here is a tip: If you wish to concentrate on what one person has posted over time, you can click on their name and a thread will come up. Also, did you see the 'Discussion Board'? You can go there and click on a topic. Please let me know if you have any questions. - Terri Martin, Volunteer Mentor

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

@america, If you tap on my name, a list of my posts will come up. I have stated many times that the 'Big 3' antibiotic cocktail is not the only game in town for treating mac. I have bronchiectasis, copd, mild pulmonary hypertension, mac and pseudomonas infection (both in remission) & SVT of the heart. I have been through a lot over the years; therefore, I have a lot experiences to share. My journey with mac started out horrible, but now is manageable. I have a good quality of life now due in part to my being treated at the Mayo Clinic. It is very important that you have a 'knowledgeable' doctor. You'd be surprised how many drs, including some pulmonologists, know very little about how to treat this disease. Do you feel like you have a good doctor?

REPLY
yayaaz | @yayaaz | Jul 5, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

@boomerexpert, I would like to know the dosage you are on, and did you have any side effects? I contacted the people who made Charlottes Web to see if they had anything more specific to MAC/MAI BRONCHIECTASIS.
It seems individual research is quite prominent on this site, which is good, but it also adds to the confusion. Charlottes web seems to work great for some people with epilepsy, but not for others, which is typical with any kind of over the counter or prescribed medicine. I think CBD oil might help my aunt, but I’d like to know if you had side effects.

REPLY
yayaaz | @yayaaz | Jul 5, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

@flib Are you using Ridgecrest Clear Lung? And are you using the “advanced” one?
Thanks

REPLY
boomerexpert | @boomerexpert | Jul 5, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

@colleenyoung I was able to get CBD online before medical marijuana was legal here in FL...It is legal in all states, something Sen. Grassley was trying to change but he couldn't get the votes in the Senate

REPLY
boomerexpert | @boomerexpert | Jul 5, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

@nick52...yes, as I mentioned, to reduce inflammation

REPLY
america | @america | Jul 5, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

Hi boomerexpert, I am going to try and get the CBD oil. I’m not sure if my doctor will give it but I’ll try. I’m in Florida so it should be ok. Thanks Rita.

REPLY
View MoreView Less
Please sign in or register to post a reply.