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 | Feb 27, 2017
In reply to @katemn "Hello All, I read a while ago about this and have been practicing nightly to try..." + (show)
@katemn

Hello All, I read a while ago about this and have been practicing nightly to try to get to sleep at night since I really do have trouble getting to sleep. This is what I read and what I do:

You can do this anywhere but especially to quiet the mind to get to sleep
Gently press your thumb against your index finger, then your middle finger, then your ring finger, then your pinkie finger.
When you touch your index finger, say: I
When you touch your middle finger, say: AM
When you touch your ring finger, say: AT
When you touch your pinkie finger, say: PEACE
Breathe deeply as you say each word. Go as slow or as fast as you’d like.

For me I find I do not need to do the actual pressing of the thumb to the fingers .. it is more of a mental visual of that process. Then as my mind wanders with the issues of the day .. I just bring my mind back to this Mantra of I .. AM .. AT .. PEACE. I find it is really helping get to sleep easier. I thought I would share it .. hope it helps someone! Hugs! Katherine

( You could also use this technique will get you through all kinds of stressful emotions and help you release more quickly .. even in the middle of a fuss with a partner or friend.)

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@decosmo, Rosie, nice addition to our Forum pages .. AND my File Cabinet .. thank you! I have had some nice help from professional acupuncture so this is a nice addition. Hugs! Katherine

3 Pressure Points to Heal Yourself
The next time you have a headache, a stuffy nose, or insomnia, don’t fret! Try using your own hands to heal yourself with acupressure.
http://www.doctoroz.com/blog/mao-shing-ni-lac-dom-phd/3-pressure-points-heal-yourself

REPLY
beatitnow | @beatitnow | Feb 27, 2017
In reply to @beatitnow "Katherine, you have been so inspiring. Has your MAC/MAI come back at all since your antibiotic..." + (show)
@beatitnow

Katherine, you have been so inspiring. Has your MAC/MAI come back at all since your antibiotic treatment? You were on antibiotics for 3 years? Are you willing to give me your contact information? I have just been diagnosed with MAI and I am supposed to start the 3 antibiotic treatment real soon. Is this disease curable? I have read yes a 30% chance, and I have read "no", just manageable. What has your doctor mentioned? Thank you SO much for your help! You seem to be such a kind lady and we are lucky to have someone so caring on this site.

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Katherine, my name is Amy. Thank you for all your wonderful information. Has your MAC infection come back at all? If not, did your doctor wait the usual year after a negative sputum sample, or did you stay on meds longer after a negative sputum sample? Thank you!!!

REPLY
decosmo | @decosmo | Feb 27, 2017
In reply to @katemn "Hello All, I read a while ago about this and have been practicing nightly to try..." + (show)
@katemn

Hello All, I read a while ago about this and have been practicing nightly to try to get to sleep at night since I really do have trouble getting to sleep. This is what I read and what I do:

You can do this anywhere but especially to quiet the mind to get to sleep
Gently press your thumb against your index finger, then your middle finger, then your ring finger, then your pinkie finger.
When you touch your index finger, say: I
When you touch your middle finger, say: AM
When you touch your ring finger, say: AT
When you touch your pinkie finger, say: PEACE
Breathe deeply as you say each word. Go as slow or as fast as you’d like.

For me I find I do not need to do the actual pressing of the thumb to the fingers .. it is more of a mental visual of that process. Then as my mind wanders with the issues of the day .. I just bring my mind back to this Mantra of I .. AM .. AT .. PEACE. I find it is really helping get to sleep easier. I thought I would share it .. hope it helps someone! Hugs! Katherine

( You could also use this technique will get you through all kinds of stressful emotions and help you release more quickly .. even in the middle of a fuss with a partner or friend.)

Jump to this post

Katherine, I don't like to grab medication as the first line of defense so I always look for alternative methods. I find these helpful.

REPLY
Katherine, Alumni Mentor | @katemn | Feb 27, 2017
In reply to @beatitnow "Katherine, you have been so inspiring. Has your MAC/MAI come back at all since your antibiotic..." + (show)
@beatitnow

Katherine, you have been so inspiring. Has your MAC/MAI come back at all since your antibiotic treatment? You were on antibiotics for 3 years? Are you willing to give me your contact information? I have just been diagnosed with MAI and I am supposed to start the 3 antibiotic treatment real soon. Is this disease curable? I have read yes a 30% chance, and I have read "no", just manageable. What has your doctor mentioned? Thank you SO much for your help! You seem to be such a kind lady and we are lucky to have someone so caring on this site.

Jump to this post

@beatitnow .. Hi Amy, DEFINITELY .. I had to have a full 12 negative sputum samples .. without a positive one in between before I was taken off the meds! Then I was followed with quarterly sputum samples, Xray, pulmonary tests until my doctor felt I was well enough to go to bi annual and then annual. It is really important to go through the full process .. those mycobacterium are sneaky critters just lying in wait to pop up .. that is why it is so important even after you go off the meds to exercise .. eat healthy .. stay positive and do your aftercare appointments. Hope this helps you! Just remember we are all here on this our shared MAC journey! Hugs! Katherine

REPLY
Jennifer | @megan123 | Feb 27, 2017
In reply to @katemn "Hello @hishamhussain, thank you for the information .. quite interesting .. the Canadian website is very..." + (show)
@katemn

Hello @hishamhussain, thank you for the information .. quite interesting .. the Canadian website is very different than anything I have ever read on a USA site ie references to blood tests: "If, after four to eight weeks of treatment, there is little or no improvement in symptoms, blood tests may be repeated. If MAC is still present in the blood, your doctor may prescribe a new combination of drugs."

Do you think it refers primarily to HIV patients? I have not had any members being diagnosed with MAC via blood test. What are your thoughts as you read it? Hugs? Katherine

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What is the name of the Canadian website. I'm from Toronto and am interested in this info??

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tessie | @tessie | Feb 27, 2017

@megan123. I wanted to comment I also live in Toronto North York. I find it unbelievable they don't know what is cause of MAC. I hope they discover soon. Regards. Tessie

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2 replies
Katherine, Alumni Mentor | @katemn | Feb 27, 2017
In reply to @katemn "Hello @hishamhussain, thank you for the information .. quite interesting .. the Canadian website is very..." + (show)
@katemn

Hello @hishamhussain, thank you for the information .. quite interesting .. the Canadian website is very different than anything I have ever read on a USA site ie references to blood tests: "If, after four to eight weeks of treatment, there is little or no improvement in symptoms, blood tests may be repeated. If MAC is still present in the blood, your doctor may prescribe a new combination of drugs."

Do you think it refers primarily to HIV patients? I have not had any members being diagnosed with MAC via blood test. What are your thoughts as you read it? Hugs? Katherine

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@megan123, .. Jennifer, the information I have is:

Canadian Citizen
As a Canadian citizen, here are some frequently asked questions for patients from Canada, including what to bring and how Mayo would work with your provincial plan http://www.mayoclinic.org/canada/faq

Anyone else have any other info .. please jump in! Hugs to all! Katherine

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 28, 2017
In reply to @katemn "Hello @hishamhussain, thank you for the information .. quite interesting .. the Canadian website is very..." + (show)
@katemn

Hello @hishamhussain, thank you for the information .. quite interesting .. the Canadian website is very different than anything I have ever read on a USA site ie references to blood tests: "If, after four to eight weeks of treatment, there is little or no improvement in symptoms, blood tests may be repeated. If MAC is still present in the blood, your doctor may prescribe a new combination of drugs."

Do you think it refers primarily to HIV patients? I have not had any members being diagnosed with MAC via blood test. What are your thoughts as you read it? Hugs? Katherine

Jump to this post

Hi @megan123
I believe you are referring to the Canadian website that @hishamhussain shared above. It is from CATIE.ca
http://www.catie.ca/fact-sheets/infections/mycobacterium-avium-complex-mac

REPLY
Katherine, Alumni Mentor | @katemn | Feb 28, 2017
In reply to @katemn "Hello @hishamhussain, thank you for the information .. quite interesting .. the Canadian website is very..." + (show)
@katemn

Hello @hishamhussain, thank you for the information .. quite interesting .. the Canadian website is very different than anything I have ever read on a USA site ie references to blood tests: "If, after four to eight weeks of treatment, there is little or no improvement in symptoms, blood tests may be repeated. If MAC is still present in the blood, your doctor may prescribe a new combination of drugs."

Do you think it refers primarily to HIV patients? I have not had any members being diagnosed with MAC via blood test. What are your thoughts as you read it? Hugs? Katherine

Jump to this post

Thank you for jumping in Colleen .. I misunderstood her concern! Katherine

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 1, 2017
In reply to @katemn "Posted by @pamelasc1, 22 minutes ago Thank you Katherine and Steve for the information as to..." + (show)
@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up - lovely subject! - I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer ... which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful "flutter" I had to turn the "+" sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max "+" setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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<br><br><br><br><br>Steve, ask your dr about tobramycin. It is expensive, but there are <br>charities that help pay for it. The specialized Walgreen's pharmacy has a list <br>of those charities. Treatment with 'Toby' is ONE drug, nebulized straight into <br>the lungs, no harsh side-effects. Best of luck on whatever you choose. Terri <br>M.<br> <br><br>

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