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!

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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.

tdrell | @tdrell | Jan 20, 2019
In reply to @windwalker "@hydrang3a Hi there. I had removed my post that you and Ling did not agree with..." + (show)
@windwalker

@hydrang3a Hi there. I had removed my post that you and Ling did not agree with (life long antibiotics). I removed it seconds after I had posted it, but I guess it doesn't go away as fast as it posts. I was hoping that no one had seen it. The night I had posted it; I was not in my right mind. I was and still am 7 hours from home using ambien to sleep in a less than ideal situation. I am with my daughter who just lost her closest, dearest friend to suicide. My mind was not in a good place and I apologize to you all. Most of you will not need life long antibiotic treatment, but there are those that do. (Me included) There are mac patients out there that are not on antibiotics long enough. I hear from those types in my private messaging on a regular basis. Some are desparately and gravely ill; largely for not being medicated enough early on in their disease process. I am talking about those whose drs put them only on a two week to one month run of antibiotics. Anyway, I apologize again for running off track. It was a negative post that I regretted the instant I posted it.

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@windwalker ..Terri...no apologies for whatever …..all of your energy is being used to support your daughter....and getting thru each day...don't worry re these postings...;put your energy into caring for yourself and daughter...keep immune system in shape!!! You don't need an exacerbation of pulmonary situation....take care...sending white light to you and daughter....and family of the lost friend..tdrell aka terri

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1 reply
nick52 | @nick52 | Jan 20, 2019
In reply to @nick52 "@pamelasc1 Dear Pamela, It is a pleasure to give you information on ClearLungs extra strenght. I..." + (show)
@nick52

@pamelasc1

Dear Pamela,
It is a pleasure to give you information on ClearLungs extra strenght. I use RIDGECREST the blue cover. Make sure this is written on it. RELIEVE CONGESTION, SUPPORT FREE BREATHING, KEEP AIRWAYS OPEN, BALANCE MUCUS LEVELS. there is a verison with a red cover it doesn’t have the RELIEVE CONGESTION in it. You can call Ridgecrest for any concern or questions 1-800-242-4649. They are located in UT (usa)
You have a directions on the bottle and I use that if I feel I am really congested. I take some for prevention when I start a cold or have a dry cough or wheeze a bit or have a bit of mucus. I do not let my body take over. I am very alert to my body so I use it when I feel I should. If I eat mucus forming food like ice cream or dairy product or pizza etc. I might take some for prevention if I hear a wheezing ( sorry I am french lol).
To me clearlungs is a savior. I have never taken the big 3 cocktail. I do not take any medication neither. I am feeling very good! I have Bronchiectasis and had MAC. I am very stable but I also watch to have a balance diet. I also take acidophilus non dairy and Milk Thistle I buy from HÜBNER. If I have stomach or a lot of mucus, I recommend you buy this book “Super Woman RX” by Tasneem Bhatia,MD. Follow her menu after you will identified the Powe type you are. If you have digestion or a lot of mucus or acid reflux. Very interesting and it made a difference in my life. BUT THIS IS ME! Acid reflux can be the cause of bronchiectasis.
Good luck and keep searching for a solution. The Divine energy is always there to help! I will keep you in my prayor for your solution. Have a nice day Nicole

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@pamelasc1

Dear Pamela,
I am glad to hear from you. ! At the beginning I took as prescribe for a full month then 2 to 3 times a week for another month then I went with 1 to two twice a week for another month. After I was taking some when I felt a little change with my respiration or when I had more mucus. I still do the same but I do not take it every day anymore. If you can take only the powder without the pills that I have no idea. I suggest you call the number I gave you for a proper answer.
Love Nicole

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 20, 2019
In reply to @tdrell "@windwalker ..Terri...no apologies for whatever …..all of your energy is being used to support your daughter....and..." + (show)
@tdrell

@windwalker ..Terri...no apologies for whatever …..all of your energy is being used to support your daughter....and getting thru each day...don't worry re these postings...;put your energy into caring for yourself and daughter...keep immune system in shape!!! You don't need an exacerbation of pulmonary situation....take care...sending white light to you and daughter....and family of the lost friend..tdrell aka terri

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@tdrell Thank you Terri.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 20, 2019
In reply to @america "Hi Terri! I have a question for you you. I had to get off the the..." + (show)
@america

Hi Terri! I have a question for you you. I had to get off the the Toby again. I love using the Toby because it’s directly to my lungs but my throat get so irritated that it hurt to swallow. Is there anything that I can use to coat my throat because of Sjogrens? And have you heard of Levaquin? Please I need some help! Thanks Rita.

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@america Hi Rita. I am sorry that you are not tolerating the toby. You can ask your dr about switching to a different inhalable. There is Amerikayce (sp), Colisten, and possible a few others. I have seen @heathert post in the past about throat lozenges that helped her. Because of your Sjogrens, your dr should be able to guide you on this. I have used Levaquin in the past. It is a strong antibiotic. Is your dr suggesting you go on that instead?

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1 reply
america | @america | Jan 22, 2019
In reply to @windwalker "@america Hi Rita. I am sorry that you are not tolerating the toby. You can ask..." + (show)
@windwalker

@america Hi Rita. I am sorry that you are not tolerating the toby. You can ask your dr about switching to a different inhalable. There is Amerikayce (sp), Colisten, and possible a few others. I have seen @heathert post in the past about throat lozenges that helped her. Because of your Sjogrens, your dr should be able to guide you on this. I have used Levaquin in the past. It is a strong antibiotic. Is your dr suggesting you go on that instead?

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Thanks Terri! I will try to find the lozenges and try Tobramycin again! I really like using it... I hope it will work. And yes the doctor called in some Levaquin just in case I get a flare up! But I see him in March so I’m hoping I won’t need to. Thanks Rita

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spencersok | @spencersok | Jan 22, 2019

@america. My wife has a cough and doesn't seem to be getting any better. She is Immune-suppressed (Liver Transplant) so her body doesn't agree with the Big 3. She has lost some weight on the last 3 month. I am thinking if the lozenges might help her a bit.

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2 replies
nick52 | @nick52 | Jan 22, 2019
In reply to @spencersok "@America. My wife has a cough and doesn't seem to be getting any better. She is..." + (show)
@spencersok

@america. My wife has a cough and doesn't seem to be getting any better. She is Immune-suppressed (Liver Transplant) so her body doesn't agree with the Big 3. She has lost some weight on the last 3 month. I am thinking if the lozenges might help her a bit.

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@spencersok, if she can take the big 3 find natural medicine to help her cough. For example Clear Lung with Ridgecrest is good to clear lung congestion, probiotics are also helpful for infections, etc. Consult a naturopath they can help her probably more than the big 3 in her case. She needs to stay away from mucus forming food like dairy, fried food, sugar etc. Check the internet they will tell you which food forms mucus. Many people can’t take medication. There body reject it because it is not for them. I have bronchiectasis and had the MAC and never taken medication but I do use natural medicine. She has nothing to loose trying. Even a nature food store could probably hernher a bit. Medical doctor can’t help when your body react to medication (pharmacy). I will keep her in my prayers and as the highest to guide you to a solution. Have a lovely week!

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2 replies
america | @america | Jan 22, 2019
In reply to @spencersok "@America. My wife has a cough and doesn't seem to be getting any better. She is..." + (show)
@spencersok

@america. My wife has a cough and doesn't seem to be getting any better. She is Immune-suppressed (Liver Transplant) so her body doesn't agree with the Big 3. She has lost some weight on the last 3 month. I am thinking if the lozenges might help her a bit.

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I’m trying to get the name of the lozenges! I’ll get back to you when I find them.

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america | @america | Jan 22, 2019

Hi heathery! Can you please give me the name of the lozenges you use? I can’t remember which one it was. Thanks @america Rita.

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heathert | @heathert | Jan 22, 2019

Hi Rita They are called Strepfen, they are Strepsils with neurofen in them. They were wonderful, sometimes I would break them in half and just have half. Heather

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