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.

Nate Gilbraith | @nategilbraith | Sep 2, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

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Welcome @oceanbliss! I see you addressed @katemn specifically in your post. Katherine is travelling at the moment with no Internet access. This community is strong and I see you've connected with @kaystrand. Thanks Kay.

Oceanbliss, I recommend you take the appointment with Dr. Vassallo at Mayo Clinic. As Katherine points out in this message http://mayocl.in/2cap3wY "...in my last appointment [Dr. Aksamit] said he now works .. as Mayo Clinic does .. with a "Team" of Pulmonary people in MAI/MAC. ...That is a MUCH better approach. Truth is I think it is pretty tough to get into him now .. AND my understanding as doctors at Mayo work as a team and discuss things with each other .. the team approach."

In other words, seeing Dr. Vassallo is a direct conduit to Dr. Aksamit and a whole team of expertise. Let us know how the appointment goes. I also encourage you to read all the messages in this forum, and ask any questions you have of the members to help you prepare for your appointment. Have you got any questions for us now?

REPLY
Kathryn S Wilbur | @kwilbur | Sep 2, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

Jump to this post

I have not been firmly diagnosed yet for MAC but I already got the gloomy story of the side effects of medications. I wish you better advice and help with Dr. Vassalo and know that those on this forum really know what they are talking about. They have gone through this and have strength. Best, Kathryn

REPLY
JanetJ | @justjanet | Sep 2, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

Jump to this post

Oceanbliss,
So glad you found this forum! You will be in great hands at the Mayo. If they are too far to travel for your follow-up care there are other good doctors out there. One source to find them is on this website https://www.ntminfo.org/patients/physician-referral-list where they have doctors listed by state that are well versed in dealing with MAC and other NTM's. It's also a good website overall. Good luck. Hang in there and keep in touch.
Janet

REPLY
Kay Strand | @kaystrand | Sep 2, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

Jump to this post

Nate, Oceanbliss appt is in 2017, long way off. How does she get in sooner, aside from cancellations?

REPLY
JanetJ | @justjanet | Sep 2, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

Jump to this post

Kay,
I think she may have meant she couldn't get in to see Aksamit until 2017 but she'll see Dr. Vassalo later this month. Not positive but I think that's what she was saying.
Janet

REPLY
Elaine | @laneyk | Sep 2, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

Jump to this post

Hi, I have just finished my treatment for MAC. The meds were not as bad as<br>what I had read about. I took Ethambutol 900 mg, 200 Azithromycin, and 600<br>mg Rifabutin for 15 months everyday. The worse thing was feeling tired. I<br>just paced myself and was able to resume most things. I had double whammy<br>as my husband passed away at the same time that I was so sick before<br>diagnosis and treatment was started. I was not diagnosed until about 3<br>months after becoming sick. Misdiagnosed and mistreated for 2 months.<br>Culture was positive but doctor did not look at the results. After repeated<br>chest x-Rays with no change got my records and sought another<br>pulmonologist. 1st month after drugs started there was a big change in<br>X-ray. Do the treatment. We only have one set of lungs and they are vital.<br>EK<br><br>

REPLY
Kay Strand | @kaystrand | Sep 2, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

Jump to this post

Oh that's good about the Dr Vasselo appt for Oceanbliss! Read that wrong.

I could not get a date with Aksomet ANYtime. They would not give me an appointment. I see his colleague however, so that's good.

While I'm here, anyone find they cough more stuff after awhile on meds? Wonder if that good or bad or neutral? I really don't feel much different, tired and occasional nausea. Hope the drugs are working. I'll know on 10/6!
Thanks all.

REPLY
Nate Gilbraith | @nategilbraith | Sep 2, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

Jump to this post

Hi Kay and Oceanbliss,
I may have interpreted incorrectly.
@oceanbliss, I had understood that you can see Dr. Vassallo this year, Sept 22, 2016. If you wanted to see Dr. Aksamit you would have to wait until 2017. Is that correct?

REPLY
nannette | @nannette | Sep 2, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

Jump to this post

@oceanbliss, I can't believe that a doctor told you there was no point in taking the drugs because they're too harsh and you wouldn't get through it! I was diagnosed in April of this year 2106, am taking all three of the meds and have had no side effects. I'm a little tired sometimes. Yes, there are some that can't take the drugs but not everyone! I've been on them for four months, I take them at three different times during the day, one in the morning, one in the afternoon and one early evening. I also take two different probiotics once in the morning two hours before the first antibiotic and then one at night two hours after the last antibiotic. This forum is such a great support system. And I live in small town in South Carolina and don't have access to these great MAC centers like Mayo and Denver and Texas. Luckily, my pulmonoligist has had over 100 cases, though, of Mac in the past years in his practice so I feel pretty confident. Good luck. I would give the drugs a try. There's a lot of cheerleaders on this site and they're wonderful. And also, I started exercising four times a weeks to get my lungs working. My best friend is a doctor and she said that was a MUST. Hang in there. Nan from SC

REPLY
Kathryn S Wilbur | @kwilbur | Sep 2, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

Jump to this post

Nanette, thank you so much for responding. Yeh for the cheerleaders! What my doctor told me had me truly depressed. This forum gives the whole picture - knowledge based on experience. Kathryn

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