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.

janovr | @janovr | Mar 29, 2016
In reply to @digmeme "I am NEW to this MAI/MAC "stuff". After nearly 9 months of suffering with what they..." + (show)
@digmeme

I am NEW to this MAI/MAC "stuff". After nearly 9 months of suffering with what they thought was pneumonia and sinus-related illnesses my family doctor assumed since I was a school teacher I had been tested for TB each year. This is no longer required in the State of AR and when he did a TB test it was positive. I was immediately referred to our State Health Department who sent cultures in and I was diagnoed with MAI/MAC. This stuff is horrible! I began a regimen of 3 drugs 3 times per week and I did fine January & February on Rifampin, Clarithromycin and Ethambutol...still had bouts of nausea and feeling like I had the flu BUT NOTHING like I had when the Pulmonologist changed me from Rifampin to Rifabutin on March 8. I laid in bed screaming with leg/foot/toe cramps, had 6-8 layers of covers and heavy clothing on to keep warm, etc. Finally a week ago I called the Pulmonologist on call who took me off everything. I went in on Monday of this week for blood work and went back on Tuesday to see the APN, who was wonderful. She did a chest x-ray and I now have Acute Bronchitis and I am OFF the 3 meds and taking my last tablet of Levaquin today. Keep in mind...................I am 65 and have NEVER been sick, other than a yearly sinus infection. Now I have been sick for a year! My major question, of course, is how I got this stuff! I know it's from birds, soil, water.....BUT here is the deal. Seeing as though I have never been sick......I was bite by an autistic student at our school in December, 2014. BAD BITE! To the extent that my hand was broken and I have had to have surgery to remove scar tissue, etc. in October of 2015. It just seems "questionable" to me and my family if there is any way this disease could have been caused by this boy's bite. He has very unsanitary habits and he literally tore my hand open and even broken a booth off in my hand. I am at a total loss how I got this horrible stuff. Do you all that have this take Priobiotics, supplements, etc. I am ready to try anything to get well. I have to start up the meds one at a time for a week sometime later this week and I dread this so much! I know that my Pulmonologist says no herbs or herbal drinks while I am on the meds. IF anyone out there can refer me to anyone who might have the answer if this is bite related please respond. I have several nurse friends who are leaning in this direction but my Pulmonologist refused to even listen to me about this being related. Just seems strange that I have never been sick and 4 months after a horrible bite I get deathly ill. I look forward to hearing any comments. Thank you so much! Linda

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My computer is down.<br />
I am very interested in sharing with other MAC<br />
persons! I live in Atlanta area and would LOVE to know a good MAC doctor!<br />
Thanks. Jan<br />
<br />

REPLY
judyo | @judyo | Apr 4, 2016
In reply to @debbiet "My husband was just diagnosed with MAC and put on the cocktail of three drugs they..." + (show)
@debbiet

My husband was just diagnosed with MAC and put on the cocktail of three drugs they give to treat the disease.
After day one on the drugs he was miserable he was fatigued couldn't eat and was just miserable. He was suppose to be on these 6 pills three days a week . Any body have this experience

Jump to this post

Yes, I have had MAC twice. My 1st lung doctor told me to try some antibiotics, and if they didn't work--we'd try some more--because I was going to be on 3 antibiotics for 2 yrs & I had to be able to tolerate them. Have him talk to his doctor about his symptoms.

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suzieapples | @suzieapples | Apr 10, 2016

Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I'm having a difficult time with the side effects. Upset stomach, depressed appetite, lethargic. Yesterday I broke out in hives, my entire body is bright red. The irony is that till I started the drugs I felt perfectly healthy. I've always exercised, eaten lots of fruits and veggies. I feel the drugs are too strong, have asked the Dr to consider three days a week, not daily.

Sent from my iPad

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7 replies
digmeme | @digmeme | Apr 10, 2016
In reply to @suzieapples "Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I'm..." + (show)
@suzieapples

Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I'm having a difficult time with the side effects. Upset stomach, depressed appetite, lethargic. Yesterday I broke out in hives, my entire body is bright red. The irony is that till I started the drugs I felt perfectly healthy. I've always exercised, eaten lots of fruits and veggies. I feel the drugs are too strong, have asked the Dr to consider three days a week, not daily.

Sent from my iPad

Jump to this post

I am right there with you! I have been in the 3 drugs for 3 months and feel worse than I did before I was diagnosed! Do you use a Pulmonologist or Infection Control<br />
Doctor? My co-pay for the Rifabutin is $180 and I am in bed 16-18 hours after taking deathly ill......for at least 15 hours! Horrible! The APN took me off of this because I developed acute bronchitis. I started back on the Clarithromycin last week 3 times a week, Ethambutol last week and dread Tuesday coming where I start the Rifabutin! This is horrible! Even thinking about just going back to my family doctor.....cannot see where this Pulmonologist has done anything to help me!<br />
<br />

REPLY
janovr | @janovr | Apr 10, 2016
In reply to @suzieapples "Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I'm..." + (show)
@suzieapples

Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I'm having a difficult time with the side effects. Upset stomach, depressed appetite, lethargic. Yesterday I broke out in hives, my entire body is bright red. The irony is that till I started the drugs I felt perfectly healthy. I've always exercised, eaten lots of fruits and veggies. I feel the drugs are too strong, have asked the Dr to consider three days a week, not daily.

Sent from my iPad

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Susie I so identify with you. Tried the meds twice. Ended up in the hospital twice. I live in the Atlanta area and we have our first support group meeting on the 24th. I am anxious to hear how others cope with this crazy disease that no one has ever heard of! I will report. Jan

REPLY
digmeme | @digmeme | Apr 10, 2016
In reply to @suzieapples "Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I'm..." + (show)
@suzieapples

Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I'm having a difficult time with the side effects. Upset stomach, depressed appetite, lethargic. Yesterday I broke out in hives, my entire body is bright red. The irony is that till I started the drugs I felt perfectly healthy. I've always exercised, eaten lots of fruits and veggies. I feel the drugs are too strong, have asked the Dr to consider three days a week, not daily.

Sent from my iPad

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Please post the things you find out at your meeting please! This is crazy that there are so many with this stuff and no one has solid answers! Thanks! I am still soooooo puzzled how I got this........I have NEVER been sick and it is still a mystery why I got soooo sick......3 1/2 months after being bite on my left hand (actually broke my hand) I get this crud. Did this biter carry something that was transmitted to me????<br />
<br />

REPLY
digmeme | @digmeme | Apr 11, 2016
In reply to @suzieapples "Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I'm..." + (show)
@suzieapples

Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I'm having a difficult time with the side effects. Upset stomach, depressed appetite, lethargic. Yesterday I broke out in hives, my entire body is bright red. The irony is that till I started the drugs I felt perfectly healthy. I've always exercised, eaten lots of fruits and veggies. I feel the drugs are too strong, have asked the Dr to consider three days a week, not daily.

Sent from my iPad

Jump to this post

I will plan to be there and will tell Mike, also. <br />
Thanks!<br />

REPLY
Lisa Y | @tutti | Apr 11, 2016
In reply to @suzieapples "Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I'm..." + (show)
@suzieapples

Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I'm having a difficult time with the side effects. Upset stomach, depressed appetite, lethargic. Yesterday I broke out in hives, my entire body is bright red. The irony is that till I started the drugs I felt perfectly healthy. I've always exercised, eaten lots of fruits and veggies. I feel the drugs are too strong, have asked the Dr to consider three days a week, not daily.

Sent from my iPad

Jump to this post

So sorry to hear how sick the meds are making you. I was diagnosed 6mos<br />
ago, only symptom I had was coughed up small amount of blood. My pulmonary<br />
and infectious diease docs are just checking me every 3mos. I dread the<br />
thought of having to start on meds. I feel perfectly fine. Can't believe I<br />
have this! Prayers for you, hope theses side effects pass soon.<br />

REPLY
janovr | @janovr | Apr 11, 2016

Great ! Make sure we connect. Have no idea how many will attend.<br />
Looking forward to seeing all us sickos! Haha<br />
Jan<br />
<br />

REPLY
1 reply
suzieapples | @suzieapples | Apr 11, 2016

Thank you for your response Tutti. My situation is similar to yours, I had started coughing up blood, other than that I felt healthy. The meds have completely depleted my energy level, not to mention all foods now taste salty making it difficult to eat much or keep it down. The hives have spread to every inch of me, except my face. Thank you for that.
I'm seeing my pulmonologist today and plan on asking for a reduction or at least spacing the meds out to three days a week. I understand that some people are able to do that. I wish you the best with this, it came as a shock to me also. Do I understand that your Dr did not immediately start you on the drugs. If thats the case, I'd like to hear more about it.
Would like to find a support group in the South Florida area, feeling pretty isolated right now.

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