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 | Nov 7, 2017

@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your husband. I feel like your husband shouldn't worry too much about Dr. Scrodin's age/experience, because the Mayo only takes on the best to work there. Sometimes 'older, more experienced' isn't always the best thing. Sometimes the older ones get complacent and do not keep up with current trends in medicine. Your doctor will have a team working with her in the way of radiologists, etc. Your husband is going to the best place for what he has going on. On my first initial visit to the Mayo, I had to hand carry in all of my medical records and films and they scanned them into my file there. Your husband needs to bring his test results for the mac, and his Ct scan, and anything else he had done recently. (if you have not already sent his records over) The tests they are likely to do are: bloodwork labs, sputem test, chest x-ray, and breathing tests, and final doctor office visit to sum up what the tests reveal and a plan for treatment. The doctor will compare results to that of his past doctor. Since his other tests are so recent, you may be able to get away with her just looking over what he has had done already and get opinion on treatment. You will be receiving an itinerary in the mail soon that will tell what tests are being scheduled. Your husband being a doctor himself can determine if he really needs re-testing and ask about that. They probably will definitely want to do a sputem test along with a suseptibility test unless they are confident that the lab that did his last one at diagnosis was a competent one. If his last tests were done well, maybe ask for them to be reviewed for a second opinion on a treatment plan and not have to repeat the tests. I hope you will let us know what you find out. Please tell your husband best of luck to him from his friends on connect.

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11 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 7, 2017
In reply to @bschaper2 "Wow, I have been gone too long from this site. Nicole, love your video above. Question..." + (show)
@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 - for those of you that use the saline inhalation 7% twice daily -- how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks - Barb

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@cila, Hi Cila! Congrats on your negative sputem tests! I am so happy for you.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 7, 2017
In reply to @windwalker "@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I..." + (show)
@windwalker

@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I have read many positive things about them. That location is a bit north of you. Dr. Fennelly is there, and is very knowledgeable with treating MAC patients. Of course, even further north in Jacksonville is our renown Mayo Clinic; that is where I go, and find that it is worth the drive. My doctor is Dr. Leventhal, (I adore that man!) I would be interested in knowing where you end up going. Good luck with your move, -Terri.

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@bschaper2, Barb, Dr Fennelly is at University of Florida Medical.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 7, 2017
In reply to @windwalker "@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I..." + (show)
@windwalker

@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I have read many positive things about them. That location is a bit north of you. Dr. Fennelly is there, and is very knowledgeable with treating MAC patients. Of course, even further north in Jacksonville is our renown Mayo Clinic; that is where I go, and find that it is worth the drive. My doctor is Dr. Leventhal, (I adore that man!) I would be interested in knowing where you end up going. Good luck with your move, -Terri.

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@bschaper2, Dr. Kevin Fennelly - pulmonology disease specialist ph# 352-265-0111 1600 SW Archer Rd. Rm 452 Gainsville, Fl. 32610

REPLY
joan912 | @joan912 | Nov 7, 2017
In reply to @windwalker "@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your..." + (show)
@windwalker

@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your husband. I feel like your husband shouldn't worry too much about Dr. Scrodin's age/experience, because the Mayo only takes on the best to work there. Sometimes 'older, more experienced' isn't always the best thing. Sometimes the older ones get complacent and do not keep up with current trends in medicine. Your doctor will have a team working with her in the way of radiologists, etc. Your husband is going to the best place for what he has going on. On my first initial visit to the Mayo, I had to hand carry in all of my medical records and films and they scanned them into my file there. Your husband needs to bring his test results for the mac, and his Ct scan, and anything else he had done recently. (if you have not already sent his records over) The tests they are likely to do are: bloodwork labs, sputem test, chest x-ray, and breathing tests, and final doctor office visit to sum up what the tests reveal and a plan for treatment. The doctor will compare results to that of his past doctor. Since his other tests are so recent, you may be able to get away with her just looking over what he has had done already and get opinion on treatment. You will be receiving an itinerary in the mail soon that will tell what tests are being scheduled. Your husband being a doctor himself can determine if he really needs re-testing and ask about that. They probably will definitely want to do a sputem test along with a suseptibility test unless they are confident that the lab that did his last one at diagnosis was a competent one. If his last tests were done well, maybe ask for them to be reviewed for a second opinion on a treatment plan and not have to repeat the tests. I hope you will let us know what you find out. Please tell your husband best of luck to him from his friends on connect.

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Thank you, Terri. I think Dr. Scrodin should be a good one to see. I have been keeping copies of all my husband's blood labs and compiling them into one document. I've included the radiologist reports, too. His last sputum sample came back negative, but it might not have been a "deep" enough sample. His CT scan this time showed an additional area of bronchiectasis, now in the lower part of both lobes (before it was only in one lobe). I need to go to Kaiser and obtain a CD of his latest CT scan, but I have all the other items required. I will let you know what the results of his visit are.

REPLY
unicorn | @unicorn | Nov 7, 2017
In reply to @heathert "Hi all good news re : Nitric Oxide Treatment, I got a reply from my email..." + (show)
@heathert

Hi all good news re : Nitric Oxide Treatment, I got a reply from my email to them, here it is:

Thanks for your email. AIT is moving as quickly as possible to provide our nitric oxide treatment for NTM patients. At this time we are conducting a phase 2 trial in Israel. We hope to begin a phase 3 trial in the United States in 2018 that will lead to US FDA approval. We have a lot of work to do and all of the employees are dedicated to succeed. I will add you to our email list so that you will be up to date on our progress.

I will forward any updates I get onto this site. So amazing that they are able to work so fast with such a promising treatment.
Heather 🙂

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Clinical trial going on right now in Canada. Using nitric oxide for NYM

REPLY
unicorn | @unicorn | Nov 7, 2017
In reply to @windwalker "@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your..." + (show)
@windwalker

@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your husband. I feel like your husband shouldn't worry too much about Dr. Scrodin's age/experience, because the Mayo only takes on the best to work there. Sometimes 'older, more experienced' isn't always the best thing. Sometimes the older ones get complacent and do not keep up with current trends in medicine. Your doctor will have a team working with her in the way of radiologists, etc. Your husband is going to the best place for what he has going on. On my first initial visit to the Mayo, I had to hand carry in all of my medical records and films and they scanned them into my file there. Your husband needs to bring his test results for the mac, and his Ct scan, and anything else he had done recently. (if you have not already sent his records over) The tests they are likely to do are: bloodwork labs, sputem test, chest x-ray, and breathing tests, and final doctor office visit to sum up what the tests reveal and a plan for treatment. The doctor will compare results to that of his past doctor. Since his other tests are so recent, you may be able to get away with her just looking over what he has had done already and get opinion on treatment. You will be receiving an itinerary in the mail soon that will tell what tests are being scheduled. Your husband being a doctor himself can determine if he really needs re-testing and ask about that. They probably will definitely want to do a sputem test along with a suseptibility test unless they are confident that the lab that did his last one at diagnosis was a competent one. If his last tests were done well, maybe ask for them to be reviewed for a second opinion on a treatment plan and not have to repeat the tests. I hope you will let us know what you find out. Please tell your husband best of luck to him from his friends on connect.

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Trials for a new nitric oxide inhalant taking place in Canada now.

https://bronchiectasisnewstoday.com/2017/11/07/inhaled-nitric-oxide-thiolanox-pilot-trial-for-ntm-infections-to-start-in-canada/
REPLY
ling123 | @ling123 | Nov 7, 2017
In reply to @windwalker "@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your..." + (show)
@windwalker

@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your husband. I feel like your husband shouldn't worry too much about Dr. Scrodin's age/experience, because the Mayo only takes on the best to work there. Sometimes 'older, more experienced' isn't always the best thing. Sometimes the older ones get complacent and do not keep up with current trends in medicine. Your doctor will have a team working with her in the way of radiologists, etc. Your husband is going to the best place for what he has going on. On my first initial visit to the Mayo, I had to hand carry in all of my medical records and films and they scanned them into my file there. Your husband needs to bring his test results for the mac, and his Ct scan, and anything else he had done recently. (if you have not already sent his records over) The tests they are likely to do are: bloodwork labs, sputem test, chest x-ray, and breathing tests, and final doctor office visit to sum up what the tests reveal and a plan for treatment. The doctor will compare results to that of his past doctor. Since his other tests are so recent, you may be able to get away with her just looking over what he has had done already and get opinion on treatment. You will be receiving an itinerary in the mail soon that will tell what tests are being scheduled. Your husband being a doctor himself can determine if he really needs re-testing and ask about that. They probably will definitely want to do a sputem test along with a suseptibility test unless they are confident that the lab that did his last one at diagnosis was a competent one. If his last tests were done well, maybe ask for them to be reviewed for a second opinion on a treatment plan and not have to repeat the tests. I hope you will let us know what you find out. Please tell your husband best of luck to him from his friends on connect.

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I know what I'm about to say is going off on a tangent here. But Joan's question has brought up some interesting memories. A number of years ago I injured my knee and needed a surgery to replace a ligament. I was trying desperately to make appointments with a couple of the most senior orthopedic surgeons in my area to no avail. Everybody was booked. I ended up having to see someone who was about 25-30 years younger than those senior surgeons. I was very nervous and told my primary physician about it. She said the university orthopedic clinic was a very reputable clinic and they would not hire anyone who would not be top notch no matter what the age. Around the same time, a friend of mine told me her unpleasant experience with one of the senior surgeons that I wanted to see. He had sent her away saying that he would not want to operate on her because she was too old. This friend had the same knee injury, was several years younger than I was at the time she needed the surgery and was a marathon runner and was going on 100-mile bike rides regularly. She ended up finding another younger surgeon and had a successful surgery and recovery. When I relayed her story to my younger orthopedic surgeon, he said he would never turn anyone away as long as his patient was active and was motivated. He said age should not be a deciding factor but motivation to get back on our feet would be as far as he was concerned. I was very happy with the result of my surgery and have not had any problems since. Another experience I have over the years is that younger doctors tend to embrace and keep up with the new medical development and technology more eagerly than older doctors. With the type of lung diseases that we are having, any existing medical knowledge and treatment have not proven to be very effective. So anyone who is open to learn new knowledge and new technology should be someone who can benefit us in the long run.

REPLY
boomerexpert | @boomerexpert | Nov 7, 2017
In reply to @windwalker "@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your..." + (show)
@windwalker

@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your husband. I feel like your husband shouldn't worry too much about Dr. Scrodin's age/experience, because the Mayo only takes on the best to work there. Sometimes 'older, more experienced' isn't always the best thing. Sometimes the older ones get complacent and do not keep up with current trends in medicine. Your doctor will have a team working with her in the way of radiologists, etc. Your husband is going to the best place for what he has going on. On my first initial visit to the Mayo, I had to hand carry in all of my medical records and films and they scanned them into my file there. Your husband needs to bring his test results for the mac, and his Ct scan, and anything else he had done recently. (if you have not already sent his records over) The tests they are likely to do are: bloodwork labs, sputem test, chest x-ray, and breathing tests, and final doctor office visit to sum up what the tests reveal and a plan for treatment. The doctor will compare results to that of his past doctor. Since his other tests are so recent, you may be able to get away with her just looking over what he has had done already and get opinion on treatment. You will be receiving an itinerary in the mail soon that will tell what tests are being scheduled. Your husband being a doctor himself can determine if he really needs re-testing and ask about that. They probably will definitely want to do a sputem test along with a suseptibility test unless they are confident that the lab that did his last one at diagnosis was a competent one. If his last tests were done well, maybe ask for them to be reviewed for a second opinion on a treatment plan and not have to repeat the tests. I hope you will let us know what you find out. Please tell your husband best of luck to him from his friends on connect.

Jump to this post

I too have learned the moral of this story...older in medicine is not necessarily better...

REPLY
pfists | @pfists | Nov 7, 2017
In reply to @windwalker "@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your..." + (show)
@windwalker

@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your husband. I feel like your husband shouldn't worry too much about Dr. Scrodin's age/experience, because the Mayo only takes on the best to work there. Sometimes 'older, more experienced' isn't always the best thing. Sometimes the older ones get complacent and do not keep up with current trends in medicine. Your doctor will have a team working with her in the way of radiologists, etc. Your husband is going to the best place for what he has going on. On my first initial visit to the Mayo, I had to hand carry in all of my medical records and films and they scanned them into my file there. Your husband needs to bring his test results for the mac, and his Ct scan, and anything else he had done recently. (if you have not already sent his records over) The tests they are likely to do are: bloodwork labs, sputem test, chest x-ray, and breathing tests, and final doctor office visit to sum up what the tests reveal and a plan for treatment. The doctor will compare results to that of his past doctor. Since his other tests are so recent, you may be able to get away with her just looking over what he has had done already and get opinion on treatment. You will be receiving an itinerary in the mail soon that will tell what tests are being scheduled. Your husband being a doctor himself can determine if he really needs re-testing and ask about that. They probably will definitely want to do a sputem test along with a suseptibility test unless they are confident that the lab that did his last one at diagnosis was a competent one. If his last tests were done well, maybe ask for them to be reviewed for a second opinion on a treatment plan and not have to repeat the tests. I hope you will let us know what you find out. Please tell your husband best of luck to him from his friends on connect.

Jump to this post

@ unicorn
Please keep us posted

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