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.

jewel8888 | @jewel8888 | Jan 19, 2017
In reply to @kwilbur "I, too, have a cavitary nodule in my right upper lobe but it has decreased in..." + (show)
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don't know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others' experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

Jump to this post

Hi Terri, thank you so much. I moved to Myrtle Beach a year ago. I knew i could get insurance and see what drs i decide i need. Im better off than the plan i had. My old NC Drs didnt do anything, not realizing i had lung issues after a three level neck fusion.l in 2015. I dont have TB but the scar tissue thet see they cant explain yet.

MUSC Dr i met sounds qualified, but he is reluctant with my new shellfish allergy and uticaria that isnt going away. He said he wish i didnt live at beach, its makung me worse.

REPLY
heathert | @heathert | Jan 19, 2017
In reply to @ehliny "A question for all of you: is there a connection between MAI and GERD? Thanks! (I..." + (show)
@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

Jump to this post

Its a very tricky situation, when we take GERD meds it stops our acid production, and acid is what will kill any MAC bacteria which reaches our stomach so if theres less acid it doesnt kill the bacteia. Nothing is easy with this MAC unfortunatly. Heres to a quick easy cure soon for all of us!

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jewel8888 | @jewel8888 | Jan 19, 2017
In reply to @kwilbur "I, too, have a cavitary nodule in my right upper lobe but it has decreased in..." + (show)
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don't know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others' experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

Jump to this post

Terri, Oops, hit the send button. I feel so bad your having less lung function. Im supposed to do a breathing test, the last appt i had rhe girl left early because hurricane Mathew was headed our way, so i am tryibg to be patient.
Hugs to you, hopibf your having a nice day.
Julie

REPLY
heathert | @heathert | Jan 19, 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

Jump to this post

Dont feel guilty, its great to hear some good news. All the best for your next sputum.

REPLY
Katherine, Alumni Mentor | @katemn | Jan 19, 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

Jump to this post

@tdrell, Terri, you have ZERO need to feel guilty! What YOU ARE is an inspiration to ALL!! A PERFECT example of someone who came on to our Forum REALLY concerned .. THEN read all the past pages of the Forum .. educated yourself .. did your 'due diligence' .. THEN became your OWN BEST ADVOCATE! YOU my dear are our HERO!! We are SO proud of you!

Come what may after the 5 weeks of the sputum culture . YOU know in your heart that you have done absolutely the very best things possible for your health .. AND will continue no matter the outcome! PLUS you now have the tools to deal with whatever comes .. the antibiotic treatment or NOT! You have found a community of people who support you .. whatever the outcome! Sending you a BIG hug!
Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 19, 2017
In reply to @ehliny "A question for all of you: is there a connection between MAI and GERD? Thanks! (I..." + (show)
@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

Jump to this post

@gaylejean, Gayle, based on the experience of others on our Forum .. I might suggest you at least elevate your bed :
Prop up the bed. When you stick blocks under the head of your bed and raise it 6 to 8 inches, gravity will prevent the acids in your stomach from flowing into the esophagus during the night. Tight waistbands can aggravate your GERD symptoms. Wear looser clothing, especially at night. My thinking per the above is raising your bed could at least be help .. then just be VERY vigilant! NO ONE knows just how any of us got our MAC .. GERDS is just ONE suspected way.

But as @windwalker .. Terri says below . . PERSONALLY I would NEVER stop with that medication without discussing it with my MAC doctor .. because a Terri says .. GERD can be "silent". Hope this information helps! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 19, 2017
In reply to @ehliny "A question for all of you: is there a connection between MAI and GERD? Thanks! (I..." + (show)
@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

Jump to this post

@windwalker .. Terri .. good answer .. sensible. thanks for jumping in! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 19, 2017
In reply to @kwilbur "I, too, have a cavitary nodule in my right upper lobe but it has decreased in..." + (show)
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don't know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others' experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

Jump to this post

@jewel8888 .. Julie, I PROMISE you that if you read the past pages of this Forum .. take notes . you will ABSOLUTELY be able to know if your new doctor "IS" qualified .. not just "sounds" qualified. How will you know? BECAUSE thorough educating yourself on these pages you will KNOW exactly WHAT/HOW/WHEN he should be doing various things .. questions he should be asking etc! Please do your "due diligence" in educating yourself .. remember .. it is YOUR body .. YOU must be your own best advocate .. no one else! Please keep us posted on how it goes .. we are here for you every step of the way on this our shared journey! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 19, 2017
In reply to @katemn "Dear 128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila ....." + (show)
@katemn

Dear 128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @del .. Del, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7, @jewel8888 .. Julie, @josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S,@laneyk .. Elaine, @liliane .. Liliane, @lindam272 .. Linda, @lynnettehuler .. Lynn, @marier .. Marie, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Maryjo, @marzz .. , @melissa23 .. Melissa, @mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @pfists .. Shari ,@pamelasc1 .. Pamela ,@reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, @worriedson, and anyone else I forgot to make note of!

Just a tip:
If you want to get to the VERY LAST POST ON OUR OUR FORUM .. OR TYPE A VERY NEW POST .. NOT A REPLY TO A POST:
1. Wherever you are on the Forum .. go to the VERY END of that particular page
2. At the bottom of the page you will see a square marked "LAST"
3. Hit "Last" .. it will take you to the very END/last page of our Mayo Clinic Connect

Hope your find this helpful! Hugs! Katherine

Jump to this post

@windwalker .. Terri, thank you .. that is really good information for the pages of our Forum! Thanks for jumping in! Hugs! Katherine

REPLY
pamelasc | @pamelasc1 | Jan 19, 2017
In reply to @heathert "I was just wondering how many people on here had used a hot tub before their..." + (show)
@heathert

I was just wondering how many people on here had used a hot tub before their MAC./MAI diagnoses, maby even years before?

Jump to this post

Thisis Pamela - I have a hot tub and I used it for years before I was diagnosedwith MAC.  I live alone so my tub was for the most part, just enjoyed byme.  I kept it immaculately clean, checked chemicals weekly and changedthe water once a year. It is outside, so the vapors were kept to a minimum. When I received my diagnosis of MAC, my doctor told me NOT to use itagain.  I followed his orders, very reluctantly ( I LOVED my hot tub!)That was in November of 2015, when I began the 3 times a week routine of themeds for MAC.  In December, my cough got worse and a sputum test revealed Pseudomonas. I went on Levofloxyn and that cleared it up right away.  I had thewater in the hot tub tested by a water lab and it did show Pseudomonas, butthey said there was no presence of MAC.  I emptied the tub and will notuse if for now.  I have had bronchiectasis for years; I used my hot tubweekly for years... yes, my cough did get worse, but not like what I had when Iwas diagnosed with Pseud. - did I get the Pseud from the hot tub?... maybe.. . hot tub companies are familiar with Pseud so I suggest you research thiswith them.  I was told just beforeemptying the water, to hit it hard with chlorine to kill the pseud – can onehave a hot tub without pseud?  I do notknow.  I want to do more research onthat.  The water tests are not cheap, butI do think one can test the water with a reputable lab and determine if yourwater does carry pseud and/or MAC.  If Ido decide to fill my tub up again after I complete my regimen of meds (April ofthis year), I plan to test the water on a regular basis.  But I have not decided yet if taking thatrisk is too high.  And how effective iswearing a mask when using a hot tub?  Ido not know, but my sense is that it may not be 100% effective – I would ratherknow that my water does not carry Pseud. or MAC.  And if I cannot find that out, I will  not use it.   Best to all of you, Pamela  

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