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 | Jan 19, 2017

@pamelasc1, Pamela, I just would be so scared if I was you. Don't forget .. the mycobacterium ONLY becomes 'stable'/stops colonizing in your lungs after you stop your antibiotic treatment! AND you can later get a second/THIRD mycobacterium! My second mycobacterium that I got was the REALLY serious one that kicked me into not 12 to 18 months of antibiotics .. but THIRTY months .. it was the type:MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES. A VERY nasty critter!

Pam, this is ONLY a question you can discuss with your ID doctor .. but please do so. It is too big a decision to make on your own .. or with this Forum. I know you love your hot tub .. BUT I LOVE my ice cream .. would eat it twice a day .. but I know to be healthy I just can't .. so I don't keep it in the freezer because I know if it was there I'd eat it .. out of sight out of mind! Frankly I would not bother with 'research' .. this is a question for you and your doctor. The internet is FULL of garbage. Hope you don't mind me saying this .. just my opinion .. but I care about you. Hugs to you! Katherine

REPLY
1 reply
jewel8888 | @jewel8888 | Jan 19, 2017

Really good advice, i plan on discussing this too! Has there been any discussion about swimming in the pool?

I was a friend of ice cream after my neck fusion. The pounds started to add on, which i needed. This illness grabbed me after i stopped the special treat so i quickly lost it and more.
I am balanced now, had a kick in the rear, a surprise box of veggies and fruits arrived at my door...a very special gift indeed!!! I plan on paying it forward as it was so generous.
Julie

REPLY
Katherine, Alumni Mentor | @katemn | Jan 19, 2017

@jewel8888, Julie, same thing with the swimming pool .. great question .. please share with answer with the group!

Julie, what a GREAT idea .. the surprise gift of a box of veggies and fruit for a friend newly diagnosed with something .. love that idea .. AND you are indeed blessed to have someone in your life who cares about you that much! Hugs! Katherine

REPLY
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

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Kateherine,

You are so sweet and encouraging. I feel better here where i can learn and be better informed, plus the A+ support from members. Ill be reviewing more of the forum and making those notes.
Im glad my dr next week will listen and send me where we think its best. He is a rheumatoligist but acts as my primary too.

I also have a pain specialist that i see the same day, she is so supportive, caring, and smart. Before going to this practice, i had DNA testing for best medication and susepbtibility (sp?) They are now usung this testing to help other patients.
Have a good evening,
Julie

REPLY
melrosedecosmo | @melrosedecosmo | 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 Julie, I am curious about your reference to having DNA testing for best medication. Were you tested to find out the medications that might harm you and those your body could handle? I ask because I have so many allergies.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 19, 2017
In reply to @katemn "@pamelasc1, Pamela, I just would be so scared if I was you. Don't forget .. the..." + (show)
@katemn

@pamelasc1, Pamela, I just would be so scared if I was you. Don't forget .. the mycobacterium ONLY becomes 'stable'/stops colonizing in your lungs after you stop your antibiotic treatment! AND you can later get a second/THIRD mycobacterium! My second mycobacterium that I got was the REALLY serious one that kicked me into not 12 to 18 months of antibiotics .. but THIRTY months .. it was the type:MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES. A VERY nasty critter!

Pam, this is ONLY a question you can discuss with your ID doctor .. but please do so. It is too big a decision to make on your own .. or with this Forum. I know you love your hot tub .. BUT I LOVE my ice cream .. would eat it twice a day .. but I know to be healthy I just can't .. so I don't keep it in the freezer because I know if it was there I'd eat it .. out of sight out of mind! Frankly I would not bother with 'research' .. this is a question for you and your doctor. The internet is FULL of garbage. Hope you don't mind me saying this .. just my opinion .. but I care about you. Hugs to you! Katherine

Jump to this post

<br><br><br><br><br>Pamela, that is excellent advice from Kate.<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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?

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<br><br><br><br><br>Pamela, I feel certain I got my MAC from our hot tub. I do know one thing, <br>and that is that the mac can be resistant to the hot tub cleaning chemicals, and <br>chlorine, and heat! Our's was outside too, but when it evervieces (sp) it is at <br>nose level and you breathe it in. We got rid of the hot tub.  -Terri <br>M.<br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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

<br><br><br><br><br>I became ill 2-3 weeks after being in a hot tub. I was on vacation at a <br>friend's house; we used the hot tub for a week. The water had a slight 'pond' <br>smell to it; kind of like algea, and I got itchy red bumps after I got <br>out. My friend claimed that he kept the chemicals balanced, but may have gone <br>several days past when it should have had more added. I went to the dr and they <br>just put me azithromax antibiotic. No sputem test or anything. I became sicker <br>and sicker, five months later, they finally did a sputem test and found MAC in <br>full bloom. I cannot prove I got it from the hot tub, but the circumstances are <br>there.<br> <br> <br> <br><br>

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tdrell | @tdrell | Jan 20, 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

All ....I forgot to include that Dr Huitt my primary Dr at NJH doubled the Vit D I take to 4000 units a day....MY lab test showed I was at 50 and she said she likes to see it at 100....i asked" for immunity?" She said yes. Tdrell

REPLY
Katherine, Alumni Mentor | @katemn | Jan 20, 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

Thanks @tdrell, Terri That is is one of the testing I recommend .. it is common for MAC patients to be low on VD .. Personally I always purchase the brand Nature Made vitamins for it's quality .. ' Nature Made is the first brand to earn the USP Verified Mark on one of its products, an independent certification for quality and purity.' Hugs! Katherine

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