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.

unicorn | @unicorn | Jun 30, 2017
In reply to @lindam272 "Has anyone ever experienced this medicine or the disease as a contributing factor to Eustachian tube..." + (show)
@lindam272

Has anyone ever experienced this medicine or the disease as a contributing factor to Eustachian tube dysfunction? I have that in my right ear so just wondered. Never had a problem until a few months ago. Linda M

Jump to this post

Lindam One of the big three drugs for MAC, azithromyacin causes extreme tinnitus in the the ear. I got it, may be related.

REPLY
lindam272 | @lindam272 | Jun 30, 2017
In reply to @lindam272 "Has anyone ever experienced this medicine or the disease as a contributing factor to Eustachian tube..." + (show)
@lindam272

Has anyone ever experienced this medicine or the disease as a contributing factor to Eustachian tube dysfunction? I have that in my right ear so just wondered. Never had a problem until a few months ago. Linda M

Jump to this post

I've had tinnitus for years. Worse since on the meds though. Thanks! Linda M

REPLY
imeehaigt | @imeehaigt | Jul 1, 2017
In reply to @milagro103 "Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor..." + (show)
@milagro103

Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor have tested my husband they find no disease. The only thing they found was a slow growing bacteria mycobacterium ventiflavum. There is no treatment he is just on oxygen and Cellcept .6liters resting 8 walking 10 excercising. They gave him the TB meds but he became very ill. I wonder if a second opinion at the Mayo Clinic would help.

Jump to this post

Hi @milagro103 I suggest you get a 2nd opinion with infectious disease especialist. I was diagnosed with NTM or mycobacterium but my doctor did not request for specie identification I took ethambutol rifampicin and clarithromycin for 18 months. According to my infectious dissease not all NTM ot mycobacterium needs to be treated. I strongly suggest get a 2nd opinion from infectious disease specialist before you undergo treatment.

REPLY
imeehaigt | @imeehaigt | Jul 1, 2017
In reply to @windwalker "Hello! I left my Mayo visit on Tuesday on cloud nine. I found out that I..." + (show)
@windwalker

Hello! I left my Mayo visit on Tuesday on cloud nine. I found out that I had raised my lung function to 44%, up from 40%. My Dr was totally AMAZED since I suffer from a progressive disease. We figured it was due to the antibiotic and salt treatment regimen and my cardio classes. He said that 4% doesn't sound like much, but 4% in the other direction (down) starts to put me in the lung transplant catagory. Mainly because it would mean I am still steadily progressing downward. I cannot tell you how disheartening it has been; to go to my check-ups every six months and be told that I am consistantly losing lung function. I had said to my husband when I joined the gym six months ago that I was going to amaze my doctor, and I DID!
I asked about the new drugs that are in trials right now, and he said he expects them to be approved and out within six months to a year Hooray!!! I do know that the inhaled Cipro is one of them. I forgot the name of the other, but it is one that was mentioned at the NTM convention. He said that staying on the salt treatments is critical to keep good lung hygiene. Those of you doing this, stay with it. Those of you who are not, ask your dr to prescribe it. Hope everybody is doing well. Hugs - Terri M.

Jump to this post

I agree with you ive been taking anti biotics before and fluimisil but no improvement when I started excersing everyday and deep breathing I can really feel the improvement.

REPLY
boomerexpert | @boomerexpert | Jul 1, 2017
In reply to @milagro103 "Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor..." + (show)
@milagro103

Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor have tested my husband they find no disease. The only thing they found was a slow growing bacteria mycobacterium ventiflavum. There is no treatment he is just on oxygen and Cellcept .6liters resting 8 walking 10 excercising. They gave him the TB meds but he became very ill. I wonder if a second opinion at the Mayo Clinic would help.

Jump to this post

Absolutely get another opion...for the following reasons: that they gave him TB meds which is a dangerously wrong treatment for NTM's; there is treatment for mycobacterium all of which are slow growing but you must know which strain of the hundreds he has...clearly these folks know little about the infection; he needs proper care from docs who are experts on the disease.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 2, 2017
In reply to @milagro103 "Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor..." + (show)
@milagro103

Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor have tested my husband they find no disease. The only thing they found was a slow growing bacteria mycobacterium ventiflavum. There is no treatment he is just on oxygen and Cellcept .6liters resting 8 walking 10 excercising. They gave him the TB meds but he became very ill. I wonder if a second opinion at the Mayo Clinic would help.

Jump to this post

@milagro103, That is sound advice from @imeehaigt.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 2, 2017
In reply to @lindam272 "Has anyone ever experienced this medicine or the disease as a contributing factor to Eustachian tube..." + (show)
@lindam272

Has anyone ever experienced this medicine or the disease as a contributing factor to Eustachian tube dysfunction? I have that in my right ear so just wondered. Never had a problem until a few months ago. Linda M

Jump to this post

@lindam272 I
got tinnitis from taking Spiriva. It went away when I stopped using it. Not
pleasant!
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 2, 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

@waterboy, Welcome to our forum. I am an Alpha-1 carrier
myself. Are you a carrier or do you have the double gene for it making it full
blown? - Terri M.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 2, 2017
In reply to @milagro103 "Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor..." + (show)
@milagro103

Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor have tested my husband they find no disease. The only thing they found was a slow growing bacteria mycobacterium ventiflavum. There is no treatment he is just on oxygen and Cellcept .6liters resting 8 walking 10 excercising. They gave him the TB meds but he became very ill. I wonder if a second opinion at the Mayo Clinic would help.

Jump to this post

@milagro103,
Hi. If you can get him to the Mayo, GO!  Few doctors really know how to
deal with mycobacterium infections. He needs an excellent INFECTIOUS DISEASE
doctor. Please keep us posted. - Terri M.
 

REPLY
Bill | @waterboy | Jul 2, 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

I am genotype MZ level 112.

REPLY
View MoreView Less
Please sign in or register to post a reply.