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.

Katherine, Alumni Mentor | @katemn | Apr 17, 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

Both Suzie and Digmeme, I can ONLY speak for myself .. BUT based on what you are going through .. I would only ask if your M.D. is WELL VERSED in MAI/MAC? Not every Pulmonologist is knowledgeable about MAI/MAC! It would scare the dickens out of me to go through this process if my hand had not been held by a doctor who specialized in MAI/MAC! I know they are hard to find because our disease is not that common .. but the drugs we must take are also not that common. So I would just say .. do your due diligence .. make sure your doctor is at the top of their game on your disease .. and remember that NO ONE cares about your body the way you MUST! You are given one body for this life time .. and you must take care of it like you would your child. Hope I don't sound like a Mom/Grammy .. but that is what I am .. can't help it! I just feel bad .. what you are going through! Sending you hugs!

REPLY
Katherine, Alumni Mentor | @katemn | Apr 17, 2016
In reply to @janovr "Great ! Make sure we connect. Have no idea how many will attend. Looking forward to..." + (show)
@janovr

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 />

Jump to this post

Jan, It sound as if you are going to create an MAI/MAC support group. I hope I am not speaking out of turn .. but I will tell you about my personal experience. When I was first diagnosed I was like a sponge .. I was SO eager to understand what was happening to my body and what MAI/MAC was all about .. and this was before I had found this forum. So I googled and found a MAI/MAC support group in my Metropolitan area. I attended two times.

After the second time I discussed it with my husband and decided I was NEVER going back! Why? Because I realized I came back each time very depressed. Why? Because for whatever reason I came home feeling that the attendees "had BECOME THEIR DISEASE"! And I was DETERMINDED that MAI/MAC was just going to be a PART of who I was .. and a VERY MINOR piece of who I was. That I absolutely was NOT going to focus on it .. that I would deal with it when I HAD to ..but otherwise I was going to continue to live my life to the fullest and be as happy and healthy as I possibly could.

That I would have an attitude of gratitude for all the good things I had in my life and not dwell on what I didn't have. So I would just say .. in your meeting .. keep it upbeat and positive .. there are people in the world who have it SO much worse than we do! There again .. hope I am not speaking out of line .. I want us all to stay positive .. healthy and happy!

UPDATE:
Thank you for your "like" on my thoughts on a MAI/MAC Support Group. Truthfully I was a bit afraid to weigh in on the subject .. but I was fearful of a potential fall out of a "pity party" like I found when I went to my local Support Group. Our forum really tries to be supportive .. upbeat and positive .. to help each other on our journey .. that is why I keep coming back! Thank you all for all your supportive notes to each other!

REPLY
Katherine, Alumni Mentor | @katemn | Apr 17, 2016
In reply to @suzieapples "Thank you for your response Tutti. My situation is similar to yours, I had started coughing..." + (show)
@suzieapples

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.

Jump to this post

Suzie, just keep coming back to the forum .. you are NOT isolated .. we are all here for each other in this journey!

REPLY
Katherine, Alumni Mentor | @katemn | Apr 17, 2016
In reply to @barbjh "Hello, I am new to this but was diagnosed this last summer with the MAC infection,..." + (show)
@barbjh

Hello, I am new to this but was diagnosed this last summer with the MAC infection, they found nodules in my lungs that were consistent with an atypical infection. After final getting a sputum sample it grew staph and MAC infection. I was feeling wiped out all the time and losing weight. I cough sometimes but not a lot at this time. I live in MN and saw doctors in Minneapolis and after reading information I decided to go to the Mayo clinic.
Katherine you were right about Timothy Aksamit. He seems very knowledgeable and trust him completely. I am so lucky to have the Mayo clinic so close by. They are amazing.
We are holding off the drug treatment for now....but it may be in my future.
I just turned 60 years old and am single so the idea of this wearing me down is kind of depressing. This is the biggest hurdle for me.
That is why this forum is a great idea. Not many people know about MAC. I just saw my dermatologist and she actually knew all about, that surprised me.
I will write more later, tonight I am dragging.

Jump to this post

Hello Barb, SO glad you got into Dr. Aksamit .. he is just wonderful! You can just totally trust him to tell you when/if you should start the drug therapy. Don't be afraid of it .. read the various threads .. you will see mine. You will see that I foolishly held off the therapy because I believed all the "stuff" about the side affects and thought that surely I would get them all! Nope! Each body and individual are so different .. in retrospect I did so well. Sure it was not a piece of cake .. I had to sleep 10 hours a night and lost weight .. had sleep disturbances .. BUT I am now in remission.

Just go with the flow .. being single .. depend on the people who care about you .. don't pretend to be brave all the time .. let people in .. let people take care of you emotionally. Stay on this forum .. good people here .. we are all on the same journey! Sending you a hug!

REPLY
e345l | @e345l | Apr 18, 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

Jump to this post

I can vouch for the fact that 2 people who live together and work in the<br />
same environment, one can get the MAC and the other not. Haven't found it<br />
to be genetic. Surprised to see how many people have it. A lot of people<br />
have never heard of it before.<br />

REPLY
Lisa Y | @tutti | Apr 22, 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

Hey suzieapples, I've been thinking about you. How are you doing with your<br />
drug therapy? I hope you are better. I get checked again in July, hope<br />
there are no changes or I'll have to start drig therspy too! Hope to hear<br />
from you. Your friend Tutti<br />

REPLY
cacallahan | @cacallahan | Apr 23, 2016

Hello. I am new to this. I am a 55 yr old woman, who is a caregiver for my ill parents and an adult handicap son. I was recently diagnosed with MAC and I see a Infectious Doctor on the 26th. I am so scared about the treatment. I have heard the reaction to the meds are worse then the disease. I am afraid I won't be able to take care of my family. I do not have anyone to help and I am in this alone. I really just want to know if the side effects are as bad as my pulmonary Doctor said. I am thinking about not talking the meds. Anyone have any suggestions? Scared.. 4-23-16

REPLY
3 replies
janovr | @janovr | Apr 23, 2016
In reply to @cacallahan "Hello. I am new to this. I am a 55 yr old woman, who is a..." + (show)
@cacallahan

Hello. I am new to this. I am a 55 yr old woman, who is a caregiver for my ill parents and an adult handicap son. I was recently diagnosed with MAC and I see a Infectious Doctor on the 26th. I am so scared about the treatment. I have heard the reaction to the meds are worse then the disease. I am afraid I won't be able to take care of my family. I do not have anyone to help and I am in this alone. I really just want to know if the side effects are as bad as my pulmonary Doctor said. I am thinking about not talking the meds. Anyone have any suggestions? Scared.. 4-23-16

Jump to this post

Cacallhan.....I was diagnosed in May, 2015.  I tried twice to take the medicine and my body would not tolerate it....that does not mean your body would react the same.  Give it a try. That way you will know as many are successful.  I was and still am dealing with many other health issues and had to make the choice of one over the many others.  Fatigue and weight loss were my biggest issues with MAC.  EXTREME, DIBILITATING nausea was my issue with the Big 3 Meds.  Take care of yourself and stay tuned.  There are many good people on this site who share this weird disease.  God bless.Jan<br />
<br />

REPLY
Katherine, Alumni Mentor | @katemn | Apr 23, 2016
In reply to @cacallahan "Hello. I am new to this. I am a 55 yr old woman, who is a..." + (show)
@cacallahan

Hello. I am new to this. I am a 55 yr old woman, who is a caregiver for my ill parents and an adult handicap son. I was recently diagnosed with MAC and I see a Infectious Doctor on the 26th. I am so scared about the treatment. I have heard the reaction to the meds are worse then the disease. I am afraid I won't be able to take care of my family. I do not have anyone to help and I am in this alone. I really just want to know if the side effects are as bad as my pulmonary Doctor said. I am thinking about not talking the meds. Anyone have any suggestions? Scared.. 4-23-16

Jump to this post

Calcallahan, I am SO glad you found this supportive forum! I was diagnosed at age 64 .. I also was very afraid of the antibiotic treatment after reading so much negative on the internet .. to the point that I "refused" treatment foolishly until I was diagnosed with a 2ND very serious mycobacterium "ABSCESSUS SUBSPECIES" . Because I waited for treatment .. I then had a much more serious process of treatment. Frankly I wish I had not waited. For me personally I did have some issues .. fatigue .. sleep disturbance .. weight loss etc. BUT I have now been stable since May 2014!! YEAH!

It might help you to read through the various posts on this forum .. there is a LOT of information here on various people's journeys. Each person must make their own decision .. each body will react differently .. adjust differently .. take a different amount of time to adjust to the meds .. BUT with a positive attitude and putting one foot in front of the other .. knowing that if NOT treated the mycobacterium will NOT go away .. it just gets worse .. it is an easier decision just to put your face to the sunshine and move forward.

Remember .. you are NOT alone .. keep coming back to this forum .. there are a LOT of kind supportive people here to help you along on your journey!

REPLY
cacallahan | @cacallahan | Apr 24, 2016

Thank you Katherine for your advice. I am just sick about this and find myself constantly crying. I don't usually get sick, and if I do I try to hide it especially from my son who is disabled. I just hope I am strong enough to be able to take care of y parents and my son. I just wonder what would happen if I choose not to take the meds? I will just talk to this doctor on Tuesday. Again thank you for your feedback. Bless you!

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