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.

boomerexpert | @boomerexpert | Jul 6, 2017
In reply to @katemn "@waterboy, do you have a first name .. more personal. I am answering you on the..." + (show)
@katemn

@waterboy, do you have a first name .. more personal. I am answering you on the MAC/Bronchiectasis Main Page BECAUSE we have quite a few Members with "Alpha1 antitripsyn deficiency" including myself .. I have: ALPHA-1 antirypsin heterozygosity, Z allele. If you use the magnifying glass up above putting in "Alpha antitripsyn" you will be able to find our various members with this issue. I WELCOME your information below .. thank you!

You say "I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own." Why don't you begin a discussion on this yourself under: https://connect.mayoclinic.org/groups/ .. you could contact Colleen Young to see if there is enough interest .. I am not really sure how/if this is possible but worth a shot. Sending you a hug! Katherine
++++++++++++++++++++++++++=

Posted by @waterboy, 52 minutes ago
I am a 67 yr old male with moderate COPD and am also an Alpha1 antitripsyn deficiency patient. Alpha 1 is a genetic disorder that effects the production of an enzyme in your liver that protects your lungs. You can be checked for free. It is somewhat rare, lucky me, 1/2500 people are Alphas. I have completed one study at Mayo in the Mindful Breathing Center concerning home exercising for COPD patients and am in another in the Morgan Stanley building… I strongly suggest you check them out… Pulmonary Research Center centering on Beta Blockers to reduce exacerbations. I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own.

Jump to this post

Thanks, Katherine, and feel free to share after you doc visit...I'm sure you will!

REPLY
Katherine, Alumni Mentor | @katemn | Jul 6, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

Jump to this post

@unicorn .. Christa I wish I had saved my money and had gone directly to the Aerobika instead of listening to my doctor and buying the Acapella first and having it do zero for me! Our Forum speaks from experience .. sometimes I think the doctors just listen to the medical sales reps! Hugs! Katherine

REPLY
luvocean | @luvocean | Jul 6, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

Jump to this post

The aeobika does suggest to do the huff-coughing after.

REPLY
Katherine, Alumni Mentor | @katemn | Jul 6, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

Jump to this post

@luvocean .. Connie , thank you! Good advice! Hugs! Katherine

FROM MY FILE CABINET:
A "huff" cough at least 3 times .. like you were cleaning your glasses and fog them with your breath .. only MORE forcefully. Do the huff cough along with the Aerobika until you feel you have gotten up as much sputum as you possibly can. Personally I judge when to "quit" by the quantity and color of the sputum.

REPLY
ginak | @ginak | Jul 6, 2017
In reply to @freedom25 "Thank you for your replies. I have been trying to read a lot not only here,..." + (show)
@freedom25

Thank you for your replies. I have been trying to read a lot not only here, there is conflicting info it seems. The Dr. said they were afraid of my resistance to Zithro and I am allergic to another. My pneumonia encompassed my entire upper right lobe and it still is present on my Ct scan. I will talk to my Pulm again, and continue to read. I live in NJ so anyone who may know a Dr. let me know.
I will consider a second opinion Thanks.

Jump to this post

No, no antibiotics yet. Both my regular pulmonary Dr. and the specialist, Dr. Kamelhar at NYU don't think it's necessary yet. I have no symptoms. I'm using the Aerobika twice a day, but don't have much mucus to cough up. I'm scheduled in two weeks to have a sputum induction. I've never had that before so we'll see what happens after that.
Gina K

REPLY
Katherine, Alumni Mentor | @katemn | Jul 6, 2017
In reply to @freedom25 "Thank you for your replies. I have been trying to read a lot not only here,..." + (show)
@freedom25

Thank you for your replies. I have been trying to read a lot not only here, there is conflicting info it seems. The Dr. said they were afraid of my resistance to Zithro and I am allergic to another. My pneumonia encompassed my entire upper right lobe and it still is present on my Ct scan. I will talk to my Pulm again, and continue to read. I live in NJ so anyone who may know a Dr. let me know.
I will consider a second opinion Thanks.

Jump to this post

@ginak, Gina, good for you that you are using your Aerobika twice a day .. one of the best things you could be doing for yourself!! GREAT for lung clearance .. smart girl! Keep us posted on how your sputum cultures go .. AND ALWAYS request a HARD copy of the reports so you can keep track of things .. AND ask about anything you don't understand on the reports! Hugs! Katherine

REPLY
Jo Ann K | @jkiemen | Jul 6, 2017
In reply to @freedom25 "Thank you for your replies. I have been trying to read a lot not only here,..." + (show)
@freedom25

Thank you for your replies. I have been trying to read a lot not only here, there is conflicting info it seems. The Dr. said they were afraid of my resistance to Zithro and I am allergic to another. My pneumonia encompassed my entire upper right lobe and it still is present on my Ct scan. I will talk to my Pulm again, and continue to read. I live in NJ so anyone who may know a Dr. let me know.
I will consider a second opinion Thanks.

Jump to this post

I had similar, went for the induction and nothing came up

JO Ann

 

 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 6, 2017
In reply to @katemn "@waterboy, do you have a first name .. more personal. I am answering you on the..." + (show)
@katemn

@waterboy, do you have a first name .. more personal. I am answering you on the MAC/Bronchiectasis Main Page BECAUSE we have quite a few Members with "Alpha1 antitripsyn deficiency" including myself .. I have: ALPHA-1 antirypsin heterozygosity, Z allele. If you use the magnifying glass up above putting in "Alpha antitripsyn" you will be able to find our various members with this issue. I WELCOME your information below .. thank you!

You say "I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own." Why don't you begin a discussion on this yourself under: https://connect.mayoclinic.org/groups/ .. you could contact Colleen Young to see if there is enough interest .. I am not really sure how/if this is possible but worth a shot. Sending you a hug! Katherine
++++++++++++++++++++++++++=

Posted by @waterboy, 52 minutes ago
I am a 67 yr old male with moderate COPD and am also an Alpha1 antitripsyn deficiency patient. Alpha 1 is a genetic disorder that effects the production of an enzyme in your liver that protects your lungs. You can be checked for free. It is somewhat rare, lucky me, 1/2500 people are Alphas. I have completed one study at Mayo in the Mindful Breathing Center concerning home exercising for COPD patients and am in another in the Morgan Stanley building… I strongly suggest you check them out… Pulmonary Research Center centering on Beta Blockers to reduce exacerbations. I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own.

Jump to this post

@katemn Hi Katherine. As you know, Alpha-1 is near and dear to me so I
would be very interested in hearing about your dr  visit in July.

 

REPLY
imeehaigt | @imeehaigt | Jul 6, 2017

I read on your previous post about ambroxol mucosolvan its available here in the philippines and we can also buy it without prescription and yes it is very effective.

REPLY
Katherine, Alumni Mentor | @katemn | Jul 6, 2017

@imeehaigt .. imee, you are SO lucky!! Philippines is listed on the company website as : country safe to purchase from. Lucky you .. it really does help! I prefer the 75mg time release .. can you get that form there? Curious .. what is the cost? Hugs! Katherine

REPLY
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