(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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Welcome to the MAC group, @krz4ua. We look forward to getting to know you.
Here is the link to the videos you referred to https://www.nationaljewish.org/ntmvideos2016

New members can post links once they have been a member for 10 days or have made 3 or more posts on Connect. This is a safety precaution to prevent “spammers” on Connect. We look forward to seeing more posts from you on Mayo Clinic Connect.

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@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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Kzr4ua…..welcome to our great support group….within a fewvweeks …when she returns from vacation…..you will be greeted bynour mentor Kate.
Sounds like you have really been thru alot! But diligent about keeping up with your care and getting informed about our mutual enemy…NTM.
The videos from National Jewish Health from 2015 and 2016 Are great….
I will see DR Huitt at NJH starting on January 5th ….I applied to be a patient there in August. I was diagnosed in July with MAC after a bronchoscopy here in Wisconsin where I LIve. My only symptoms for 2 years had been a daily evening cough and thick white mucus. It took the two years to find the reason.the only good part to getting the diagnosis was that the two year mystery was solved.
I am not on treatment….wanted Dr Huitt to evaluate.tDrell

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@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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Windwalker….do you think it SEEMS like,more are getting NTM but actually the doctors are learning to look for it? Tdrell

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@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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Tdrell
YES, it seems many more MAC cases. But, maybe it is just more diagnosed now. Maybe it will get more research attention. It’s a shame there is no way it is tracked. Or is there?
Thanks
Kay S

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@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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As far as I have been told, it is not legally mandatory to report cases of MAC to the CDC like it is with TB. They have flagged my case in case it comes to that because I made six trips to China and have two Chinese children who were treated with Isoniazid due to positive PPD. I am certain my MAC has nothing to do with that. Positive PPD among international adoptees has to do more with BCG and being given a live virus instead of inactive virus like in the US. If MAC cases had to be documented, I believe things would change for us in terms of treatment. Irene

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@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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Hmmm, that is interesting.
 

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@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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Happy New Year! Tdrell, I do not know the answer to that. I wish all that
do get this would be treated at a non-profit learning institution like Mayo,
John Hopkins, etc. That way data could be collected.   -Terri
 

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@maryjo2sell

Hello. My name is Mary Jo. I am new to the forum. I only discovered you while looking for treatment at Mayo in Florida. I did not have MAC, I had its relative called Kansasaii. It is in the same TB family, inhaled water droplets. Where did it come from? Who knows. This was in 1996. I used the same “cocktail” as many in this forum. I recovered and felt very well…until 2009. I learned I had bronchiectasis. The doctor I went to at Duke (after many failed diagnose every where else) told me it was caused by the Kansasaii. Bronchiectasis is widened lung airways with areas that collect mucus and bacteria instead of getting rid of it. That is why you clear and cough up mucus. I take antibiotics 2weeks of every month, switching ABX each time. I use a Aerobika daily and cough up as much “stuff” as I can. Just because you have Mac does not mean you have bronchiectasis. It took years for mine to develope. I did not know that the Mac never really went away, because my doctors said my Kansasaii is gone. I do have problems with staph in the lungs. I realize this group is for Mac, but need to find a good pulmonary doctor in Florida. In 2017 my doctor at Duke cannot take out of state insurance.
My aunt has Mac so I will hook her up with forum. She definitely has trouble with the meds. Wishing you all a lovely holiday season! And stay well!

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Hello bboxer,
 
     I too love the Mayo clinic. Will be headed there
myself Jan 7.  Take care -Terri
 

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@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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Indeed there is no mandatory reporting requirement for MAC as there is for TB or HIV, as they are communicable (person to person), MAC and all other NTM’s are not. The idea of giving them a mandatory reporting designation could be a double-edged sword: on one side, the real number of infections would be known which would help dollars flow to research on treatments/cure; on the other side, unless designed accordingly, it could compel folks who are asymptomatic to get treatment (as is currently the case with TB) which of course is not desirable…the US DHHS would be the determinor of reporting status and requirements therein.

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Group
1-I am going broke buying my $50 per month Probiotic. Does anyone have a reco for a Probiotic that’s come from a doc or someone in the know? This was is 90 mill whatever is in probiotics. Would be very grateful for advise on this.

2- I go back to Mayo Rochester on January 18th. I’ve had 2 clear sputum cultures but have read that doesn’t mean much? I have ANOTHER CT scan on that date. If I still have a cavity, and my lungs look ok for it, I see a surgeon. Anyone out there had surgery for MAC? Anyone with cavitary MAC? I’m a little apprehensive about this appointment!

3- Happy New Year all. Glad I found you. It’s a crazy way to meet nice people, but it’s good we are here for each other. You’ve all helped me immensely.

Best
Kay S

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I can help with #1: I get my probiotics at Earth Origins which is I think the best of our local natural food markets. Work just fine at far less cost.
I’m glad we have each other, too, and happy, healthy, and fulfilling 2017 to you as well…and to all!

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@kaystrand

Group
1-I am going broke buying my $50 per month Probiotic. Does anyone have a reco for a Probiotic that’s come from a doc or someone in the know? This was is 90 mill whatever is in probiotics. Would be very grateful for advise on this.

2- I go back to Mayo Rochester on January 18th. I’ve had 2 clear sputum cultures but have read that doesn’t mean much? I have ANOTHER CT scan on that date. If I still have a cavity, and my lungs look ok for it, I see a surgeon. Anyone out there had surgery for MAC? Anyone with cavitary MAC? I’m a little apprehensive about this appointment!

3- Happy New Year all. Glad I found you. It’s a crazy way to meet nice people, but it’s good we are here for each other. You’ve all helped me immensely.

Best
Kay S

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Kay S…will think of you January 18….hopefully someone knows more re which probiotic is less expensive yet effective….I have it on my long list of questions for Dr Huitt at NJH.
If you have to have surgery for the cavity….ask if they can try the VAT method.
At the NTM workshop in September, I sat at lunch with two woman that had had lobes removed several years ago and said they were doing great! They looked great….said they exercised daily…had lots of energy etc

Good luck…Healthy NY 2017 terri D

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@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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At the NJH september NTM workshop Dr Falkingham…renowned microbiologist and NTM expert …..told us that the national ( possibly international) microbiologists decided to try to come up with a way to track NTMS. So there is some hope that there will be a way to prove that NTM is a growing issue…….
Llistening to one of the NTM videos from NJH workshop 2016… a speaker mentioned a registry of NTM patients that is being assembled there….I will ask about it when I am ther January 5 to 13. TerriD

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@kaystrand

Group
1-I am going broke buying my $50 per month Probiotic. Does anyone have a reco for a Probiotic that’s come from a doc or someone in the know? This was is 90 mill whatever is in probiotics. Would be very grateful for advise on this.

2- I go back to Mayo Rochester on January 18th. I’ve had 2 clear sputum cultures but have read that doesn’t mean much? I have ANOTHER CT scan on that date. If I still have a cavity, and my lungs look ok for it, I see a surgeon. Anyone out there had surgery for MAC? Anyone with cavitary MAC? I’m a little apprehensive about this appointment!

3- Happy New Year all. Glad I found you. It’s a crazy way to meet nice people, but it’s good we are here for each other. You’ve all helped me immensely.

Best
Kay S

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I had cavitary MAC. Large area in Rt. Upper lobe. Took the 3 antibiotics for 14 months. I have been off the meds . for 4 months now and am doing well. Had chest x-ray 2 weeks ago. It looked as clear as it will probably get. My doctor said scarring present and no change from previous film before discontinuing meds. Waiting for sputum results. Dr. not expecting anything, but wants to be sure.

As far as the probiotics, when I first started treatment, I asked about the use of them and was told the 3 antibiotics for MAC, did not have the effect requiring the use of them. I did not take and have had no problems whatsoever.

After reading posts from others with this disease, I have felt so blessed to be as well as I am now. Was really ill at the beginning, but turn around began after about 4 months after treatment started. I have regained most of the weight I lost and do everything I need to. I think one adjusts to the meds after a while, but I did feel better after a month or so after discontinuation. There is certainly hope with this disease.

I hope my experience will help someone else with MAC.

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@kaystrand

Group
1-I am going broke buying my $50 per month Probiotic. Does anyone have a reco for a Probiotic that’s come from a doc or someone in the know? This was is 90 mill whatever is in probiotics. Would be very grateful for advise on this.

2- I go back to Mayo Rochester on January 18th. I’ve had 2 clear sputum cultures but have read that doesn’t mean much? I have ANOTHER CT scan on that date. If I still have a cavity, and my lungs look ok for it, I see a surgeon. Anyone out there had surgery for MAC? Anyone with cavitary MAC? I’m a little apprehensive about this appointment!

3- Happy New Year all. Glad I found you. It’s a crazy way to meet nice people, but it’s good we are here for each other. You’ve all helped me immensely.

Best
Kay S

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Thanks for the encouraging words. I have been on meds for 5 months and sputtum still testing positive for MAC …

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