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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2018
In reply to @yayaaz "My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It..." + (show)
@yayaaz

My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It was not as serious until recently. She was diagnosed with MAI/MAC a couple of days ago and will see her doctor tomorrow for treatment. Her doctor told her Medicare/Medicaid won’t cover the treatment. The doctor will send a letter asking for a hearing to allow her to have the medicines needed. Do you have any other ideas that might be helpful? She will not have the money to pay out of pocket for the lengthy treatment.
Also, I’m concerned how she will withstand the treatment.
Thank you for listening and for your help.

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@pamelasc1 As for the levo, I don't know what say about that. You should probably have a good discussion with your dr about that.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2018
In reply to @alleycatkate "@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as..." + (show)
@alleycatkate

@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as I am interested in the Bidens and Cryptolepsis for preventative measures. I am asymptomatic for MAC....just diagnosed about month ago. I see you went from pos to negative. Do you still feel that you are getting great results with these two tinctures?? Any more you can say about them? I also noticed you mentioning licorice and, shoot, now I forgot the other one but it sounded like it was for Gerd? I am have my shopping cart sitting with the two tinctures and thought I would touch base with you before I ordered. I am feeling like a bit of a maniac with ordering many alternative measures...but, if they bring success, why not? I've always gone the alternative route anyway. Thanks for any input. Kate

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@alleycatkate, You may know this already about avoiding gerd. Cut out acid forming foods like tomatoes, eggplants, meat, eggs, alcohol, coffee, cocacola and others others. Don't eat or drink 3 hrs prior to going to sleep
Sleep with at least a 6" elevation. NOTE: long term use of antiacid meds can cause kidney damage. Hope this helps.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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

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@pfists Wasn't it common practice back in the day to put colloidal silver drops in newborn babie's eyes?

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boomerexpert | @boomerexpert | 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.

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@brigby @auntnanny I have RA and have been using CBD oil for over a year...in that time I've tried the top brands (Bluebird Botanicals; Highland Pharms), little impact. Moved to the best, Charlotte's Web Advanced (has more THC which is key) which finally helped... You must take it regularly (daily) and it then takes a few months to make a distinct difference.

REPLY
boomerexpert | @boomerexpert | 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.

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@nick52 CBD oil is legal in all 50 states and 5 territories...wouldn't be able to buy online if it were not...I've been getting it for over a year now and the Sheriff hasn't come a knockin'...

REPLY
Brenda R. | @brigby | 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.

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@boomerexpert THANK YOU that is very helpful!

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Moderator
Colleen Young, Connect Director | @colleenyoung | 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.

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Hi @boomerexpert
The legality of CBD oil is very murky. It can be sold online, but that doesn't make it legal everywhere. The person ordering the CBD oil has to follow the rules of their state or country of residence. This article may help clarify:
FDA – 17 States with Laws Specifically about Legal Cannabidiol (CBD) https://medicalmarijuana.procon.org/view.resource.php?resourceID=006473
Passing a CBD-specific law is not necessarily the equivalent of making medical marijuana legal because these laws do not legalize use of the marijuana plant for medical purposes.

Also you may be interested in the FDA warning letters from November 2017 that were sent to CBD companies, including Colorado company known for the popular “Charlotte’s Web” cannabidiol-rich extract. https://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2017/ucm583192.htm

I'm not trying to be contradictory or pick a fight. Rather I wish to point out that, in this unregulated territory, it is important to know one's rights and do one's homework.

REPLY
alleycatkate | @alleycatkate | Jul 4, 2018
In reply to @alleycatkate "@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as..." + (show)
@alleycatkate

@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as I am interested in the Bidens and Cryptolepsis for preventative measures. I am asymptomatic for MAC....just diagnosed about month ago. I see you went from pos to negative. Do you still feel that you are getting great results with these two tinctures?? Any more you can say about them? I also noticed you mentioning licorice and, shoot, now I forgot the other one but it sounded like it was for Gerd? I am have my shopping cart sitting with the two tinctures and thought I would touch base with you before I ordered. I am feeling like a bit of a maniac with ordering many alternative measures...but, if they bring success, why not? I've always gone the alternative route anyway. Thanks for any input. Kate

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@windwalker Thank you Terri...Yes, I have been battling Gerd for years...so am aware of alkaline vs acidic foods. I refused protonpump inhibitors...and all the rest of the meds but just did start taking rantadine last week after reading on this site that Gerd may have played a big part in getting MAC. Yikes! Now it scares the BJesus out of me when it starts creeping up my throat in the middle of the night. I usually at that point sit up straight in bed and sleep sitting up. I am trying the ginger tea recommended by several on this site and just did change my new routine of Milk thistle to include right before bed as suggested by Nick..I got super relief last night with the Milk Thistle. Apparently it cuts down on the bile. I am anxious to go to bed tonight to see if it works so well again!! The small pleasures in life!! Thanks for your thoughts on this...haha...Dark chocolate stays! 🙂

REPLY
auntnanny | @auntnanny | 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.

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boomerexpert ……. thanks so much for taking the time to post your experience with CBD...…. have been thinking about it

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.

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@flib so glad to hear.  It was really worth it for me to keep my lungs from getting a bad lung infection.  I am glad you notices the difference.  I am sure you used the one with RELIEVE CONGESTIONS. (Blue labels) It also BALANCE MUCUS LEVEL.   OUR BODY IS LIKE

AN INCUBATOR FOR BACTERIA as my doctor said SO WE MUST DO PREVENTION AND HIGH doses of PRE& probiotic is always the best way to prevent bacteria to develop.  Get yourself a good army of good bacterias to fight the enemies! 

A MAC can live in a person without any symptoms according to my pulmonary doctor. The infectious specialist said the same thing.  He said if we would do a bronchoscopy on everyone we would find a good percentage of people who have MAC. If you are asymptomatic

keep it this way.  clear you lungs! Nick 52

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