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.

Katherine, Alumni Mentor | @katemn | Mar 22, 2017
In reply to @tdrell "Folks here is my report after my 6 day workup at National Jewish Health for MAC..." + (show)
@tdrell

Folks here is my report after my 6 day workup at National Jewish Health for MAC that was found in July 2016. I had had a cough with copious mucus for 2 years and no explanation was found after visits to ENT, NP, allergists, internists, GI......multiple tests. My local pulmonologist sent me to local ID doctor in OCtober......but thanks to you guys I found out about the workshop at NJH for NTM patients on September 17th in Denver. We were visiting our daughter coincidently (She lives in Denver) at the same time. So I attended the workshop. And began the process to be evaluated there.
My appointment with Dr Gwen Huitt at NJH began january 5 and the holistic analysis ended on january 13th.
An amazing place!
Unless the 3 daily sputum cultures come back with significant amt of NTM in 6 weeks.....

I do not show indications of the infection hence do not require treatment.

The reason MAC was found in my lungs when i had the bronchoscopy was that I have severe GERD and since it...NTM is in tap water....it had been aspirated into my lungs as I slept. Repeat Cat scan showed no signs of much...I dont have the typical NTM symptoms....fatigue,chills,weight loss,fever....only the cough and mucus.
The final outcome after tests and analysis:

-No NTM unless the cultures show different in 6 weeks
-GERD- a page of instructions ....weight loss, dietary and fluid restrictions,,head of bed that elevates 30degree, continue with nexium
-No asthma which i have been taking inhalors etc for 30 years
-Allergic rhinnitus-so have to use nasal wash once a day and continue with Flonase and singulaire
-Sleep apnea so will have to get CPAP with face mask.
So just think.....had i not gone to the experts, The local ID doctor had begun to write out the prescriptions for those potent medications 3.5 months ago!!! TDrell

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@tdrell, Terri WOW didn't know there were 171 different mycobacterium .. scary! Katherine

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tdrell | @tdrell | Mar 22, 2017
In reply to @katemn "@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your..." + (show)
@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about 'horror stories' .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON'T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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Katherine...thanks for asking....yes...semi hibernating since started coughing for almost full day since return from busy hectic 2 weeks in lovely Tucson. Stamina increased mucus gone from yellow/slightly green...using inhaled bronchodilation...opted to treat it with rest and regular meds and nasal irrigations vs going to urgent care since I was improving and I knew I would see
My excellent allergist yesterday,,,,, my lungs were clear without thebrochodilator...mucus color clearing up meaning probable viral...but because we in 2 weeks..go on another air flight to west coast...and will be with new born grandson ....a short burst of oral steroids would be indicated....so I started them this morning....really gives me energy...but still coughing and mucus....meanwhile after several phone calls the Sleep apnea equipment place called to set up appt for CPAP....I said...let us wait til back from trip...don't want to start using ...since Medicare does initial surveillance for use and I think it is nuts to drag it on plane....use in a hotel at the beginning etc.
Will also have cardiac testing upon return to be sure there are not cardiac reasons for mucus and fatigue...so dear Katherine I am looking forward to summer and no Dr visits and tests ...hope you are continuing to progress in recovery! Terrid

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barbjh | @barbjh | Mar 22, 2017

It has been some time since I have written on this forum but read most responses every day. Tomorrow I go back to the Mayo for a follow up visit. Dr Aksamit has decided not to treat my MAC in the past but to just watch it. I will be doing tests tomorrow and then seeing someone in pulmonary who works under Dr Aksamit. I am a little nervous about this visit. Wish I was feeling better but that is not the case. But I have gained weight which was a concern after losing 10 pounds before. Another thing is I usually go alone so it can be overwhelming. At least I live close by, 1 1/2 hours away. I will let you know how it goes, just wanted to reach out to all of you wonderful people that can relate to the struggle. Barb

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5 replies
tdrell | @tdrell | Mar 23, 2017

Barbjh...good luck with appt to see how you are doing....weight gain I think is a good thing wth MAC...good luck tdrell

REPLY
terryb1 | @128128terry11t | Mar 23, 2017
In reply to @katemn "@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your..." + (show)
@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about 'horror stories' .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON'T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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If you get a note from your doctor, the airline will refund the penalty charge for changing your flight.
Terry

REPLY
boomerexpert | @boomerexpert | Mar 23, 2017
In reply to @barbjh "It has been some time since I have written on this forum but read most responses..." + (show)
@barbjh

It has been some time since I have written on this forum but read most responses every day. Tomorrow I go back to the Mayo for a follow up visit. Dr Aksamit has decided not to treat my MAC in the past but to just watch it. I will be doing tests tomorrow and then seeing someone in pulmonary who works under Dr Aksamit. I am a little nervous about this visit. Wish I was feeling better but that is not the case. But I have gained weight which was a concern after losing 10 pounds before. Another thing is I usually go alone so it can be overwhelming. At least I live close by, 1 1/2 hours away. I will let you know how it goes, just wanted to reach out to all of you wonderful people that can relate to the struggle. Barb

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In what way are you not feeling well?

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ijustdontbreathewell | @ijustdontbreathewell | Mar 23, 2017
In reply to @katemn "thank-you for being here Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago I was..." + (show)
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don't know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

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@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don't mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN'T have to be that way. If you CHOOSE a "helping" career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a "helping" career. That is just my opinion. I don't feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member's path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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Thanks both of you, I am just still trying to function and focus on everyday tasks, I see a new doctor tomorrow, and he will talk to me and he will have a lot of explaining to do because I am going to be asking a lot of things and I will get an answer, his professionalism and caring attitude will not be an option for him or I will politely thank him for his time and find another one until I find one that is compassionate and smart and actually cares. I am reading everything I can find and grabbing every medical record I can get my eyes on, so I appreciate your suggestions. I work in a hospital, I will leave it at that as I would like to keep my insurance, and I have a few degrees, so they are going to behave appropriately now that my migraine and my vomiting have subsided. And then I am going to be asking some very serious questions as to why no one acts like they have ever heard of MAC while the prevalence is increasing astronomically and it is mutating faster than British moths in the industrial revolution, where is the research, why are the "tests" so inconclusive, why are you not using an EM, why are you not looking at genetics, every article a new question and I want an answer. Right now I have one for anyone that has an answer. My symptoms started with my stomach, well the ones that sent me to a specialist about 2 years ago, I attributed my coughing etc. to my major allergies to everything. I have read the GERD posts, I don't know if I have GERD maybe or is it just that I take so many GOODY's because my stomach cannot break down the coating on most NSAID enteric coated to protect my stomach, but that would be called "drug-seeking behavior" should I ask for a simple little mild tramadol or meloxicam for my sinus headache, where have all the doctors gone?, crazy?, a patient is probably in their office because they are in pain and they would like that fixed, DUH. Never mind, another issue, i'm sure. But they did accuse me of probable GERD, I have read every single word, many times now. But this is my worst symptom, I am swollen up like a water balloon! It actually hurts.
My legs, ankles, feet, stomach, chest, arms, It started with abdominal swelling then moved to thoracic. We are talking I can only wear leggings and maternity type dresses or tops and loose boots or flip flops. My waist can be 30 when I wake up and 46 at 5 PM, I have to take my bra off and but on an undershirt or XL sports bra, and the leggings cannot have seams or they cut into me, socks leave huge indentations, it hurts to squat to pick something up because the back of my legs are so swollen, and I can't bend over, it feels like I am nine months pregnant. I gained this 32 pounds of "weight" in 2 months. It is not weight, because it varies throughout the day. Some days I am actually skinny as a model, and fat as Humpty Dumpty the next. I was a size two, now I am about a 14. The two doctors I complained to about this, my chief complaint in my mind, they have turned into what seems like a narcissistic fashion statement in my medical records. This is not fashion this is illness. If anyone has not read every single word of your medical records, office visit summaries in particular, I really encourage you to do so.
Do any of you also have this issue?: Thanks so much!

REPLY
patw | @patw | Mar 23, 2017
In reply to @barbjh "It has been some time since I have written on this forum but read most responses..." + (show)
@barbjh

It has been some time since I have written on this forum but read most responses every day. Tomorrow I go back to the Mayo for a follow up visit. Dr Aksamit has decided not to treat my MAC in the past but to just watch it. I will be doing tests tomorrow and then seeing someone in pulmonary who works under Dr Aksamit. I am a little nervous about this visit. Wish I was feeling better but that is not the case. But I have gained weight which was a concern after losing 10 pounds before. Another thing is I usually go alone so it can be overwhelming. At least I live close by, 1 1/2 hours away. I will let you know how it goes, just wanted to reach out to all of you wonderful people that can relate to the struggle. Barb

Jump to this post

Good luck on your visit! I am going to try the Scoott and White hospital in Temple Texas. Appointment May 2.

REPLY
Katherine, Alumni Mentor | @katemn | Mar 24, 2017

Dear All, Please be there for each other .. jump in and help .. especially watch for newcomers. It is nearly 2am .. I just got home from the hospital .. took my husband early today .. been there all day and night. Think I can bring him home within 2-3 days .. but I will not be able to be on our Forum till I get him home .. I will be at the hospital. Please be my ears and eyes .. I know you will .. sending you all a hug. Katherine

REPLY
8 replies
terryb1 | @128128terry11t | Mar 24, 2017

I do more silent reading of posts and very occasionally respond if I have anything to contribute. Had to respond to this to thank you for all that you do for us and to wish your husband a speedy and uneventful recovery. Now it's our turn to hug you back.
Terry

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