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 | Dec 15, 2016
In reply to @nelisabeth "I don't know if i am posting correctly! here goes. I am 76 year ol lady!..." + (show)
@nelisabeth

I don't know if i am posting correctly! here goes. I am 76 year ol lady! Was hospitalized last Oct .... x-ray showed NADA. i do have COPD. For five days was treated with MASSIVE steroids. Hospitalist ordered CT/contrast ...... sent me home on the Fri. after test saying it showed nothing and i was not getting welll there. So .... was sent home with MORE steroids. Could NOT function. AT follow up with MY N.P., she said the Ct showed
both lungs had pneumonia. She sent me to Pumonary Dr. He ordered a sputnum test. (they also did one in hospital but said nothing about it.)
Six weeks later, Dr. Pulmonary called me to come in .... told me i had Macobacterium Nebraskan....i do not remember how to spell it. His office staff left nothing to be desired ... so when he made appointment with Infectious Disease doc at Novant in Winston Salem .... I live 34 mins away ... I went myself to get discs, etc etc. Dr. Priest at Novant ..... even WITH directions from hospital could NOT pull up the CT himself. However he said the notes showed nothing signifigant. and dismissed me. I had of course by now on my own stopped the steroids. I was on Levaquin in hospital.
Now nausea was rendering me useless. On an intuition, saw ENT doc here in my hometown. He ran camera down my nose .... could not see any
infection but felt there was on and he put me on a hi powered antibody ... Vantin? something like that. After prescribed time ... no better. Still coughing up suds, pain ... so went back to him. This time he did a sinus CT. showed very deep pervasive infection. Put me on rounds of 3 different antibiotics
with baby dose of steroid .... for six weeks. In the midst of the last round .... the nausea began to abate. and i DID get much much better ... until ..........
began to experience upper respiratory symtoms again early November of this year. so bad on a weekend .... went to Urgent Care. would NOT inhale steroids ..... xray showed nothing ... accepted Albuterol inhaler and Levaquan. sp? The following Monday kept a pre op apt at hospital for hip replacement the 19th of this month. I continued to get worse however. Was working with scheduler nurse at Orthopedic surgeons's office ...... followed through with next pre op appt. bloodwork slightly ... very minor .. off .... everything else ok. no MRSA .. urine fine. When Lisa (wonderful woman
from Ortho) called me with results she could clearly hear i was not well. Intervened and got me into see MY N.P. She took one look and said OH MY! HO! told her i wished to go on with surgery but wasn't sure i could and she and I are going to make decision together. She immediatly took me off
Levaquin .,.. put me on Arithro .. zpak and again ... baby dose of steroid which i am tolerating. She had done a little research into the MAC i have
and finally said ..... NO ... to surgery. So ... it is postponed. I absolutely do NOT KNOW WHAT TO DO NEXT.
The Dr. i saw in winston salem at Novant, Dr. David Priest had given the go ahead for surgery. We now have a new Pulmonary Dr. here in Elkin where i live. My N.P. said she did not think a CT/wcontrast would telll if pneumonia or MAC and my bloodwork did not call for CT. BUT ... she is now wondering if that is what i had a year ago. ??????????????????????? Having had paralytic polio when young .... was several years ago i learned about Post Polio Syndrome. Verified by docs and spinal fluid. Fatigue is a part of PPS .... as is pain, etc ...... but i can cope with that. I meditate ....
exercise ... have wonderful caring friends .. have been an activist all my life but no longer.
Any ideas folks? There has been a dreadful upper respiratory virus going round here ....... it is just so hard to figger out what is tit and what is tat!
I do MAKE myself MOVE. But the fatigue is awful. and i do hurt in right lung area with this. probably all the coffing!!!!!!!!!!! ??????????
One question i do have is .... can "dese bugs" migrate? Is that a sensible question? I quit the FLucotinase...sp? Zycam spray seems to help
much better. I was told that many people are walking around with this particular MAC and don't even know it. The first doc who found it said i could have gotten it anywhere. I garden assiduously and he thot probably there ..... as am inclined to continue working if i get poked er scratched er whutevah! Have to work on my bum because legs are not strong enough anymore from PPS. whatta mess! HO!
I do know that without HUMOR ..... none of us could put up with whatever it tis that we deal with. That and meditation are my go to AND
i do exercises in the hot water of the BATHTUB!!!!!!!!! It CAN be DONE! hO! Thank you for taking the time to read this if i can figger out how
to get it to stick! nelisabeth

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Terri, similar thing happened to me. GOOD ADVICE! Hugs! Katherine

p.s. PLEASE keep us posted on your health!!

REPLY
Katherine, Alumni Mentor | @katemn | Dec 15, 2016
In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)
@katemn

Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google search. From what I could find "disseminated MAC disease is typically associated with defective cellular immunity such as hairy cell leukemia, chronic myelogenous leukemia and AIDS." This means it usually affects people with an already compromised immune system. Whether you have disseminated MAC or merely MAC, it is VERY important that you find a specialist who is familiar with MAC .. as MANY members of this Forum can attest to! Many members have found .. as you have .. that they have more knowledge of MAC than many of the doctors do.

That is WHY I told you it was SO important for you to do your "Due Diligence" and read past pages of this Forum to educate YOURSELF so you will truly understand your disease and it's ramifications. THEN you can seek out proper medical care for yourself and your wife. THEN you WILL NOT be put off by doctors " acting like it's nothing"! When you have educated yourself .. you will feel comfortable being your BEST medical advocate with doctors!

That said .. did you see our wonderful member Janet's .. @justjanet's recommendation of the clinic at UNC in Chapel Hill? You may also consider traveling to Mayo Clinic in Jacksonville, Florida. Might Chapel Hill or Jacksonville be an option? Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

As I told you before .. you are given but one body in this lifetime .. if you don't take care of it RIGHT NOW .. it can't take care of you for the rest of your journey in this lifetime. Bruce, I know you are in a REALLY tough time .. BUT you MUST gather together whatever energy and strength you can for this next REALLY important next step in finding the right doctor. If money is an issue .. perhaps this is the time to swallow your pride and call upon those who care about you .. explain the IMPERATIVE for you to travel to get the BEST care at this CRUCIAL point in your health. Sorry .. but this may be one of the most important decisions you may make for you and your wife. The old saying "If it is to be .. it is up to me!"

PLEASE keep us posted Bruce, we will be keeping you in our thoughts and sending the two of you LOTS of positive energy and LOTS of Hugs .. .. because all of us on this Forum have been on our own MAC journey .. and know it is a tough one .. though yours is a REALLY tough one! Katherine

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@bruce668 Bruce, wondering how you and your wife are doing? If you have time could you just check in and let us know how you are? We are thinking of you! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Dec 15, 2016

@kaystrand
Kay, I have been thinking further about your question. I found this source .. interesting! Definitely .. Japanese are know to LOVE their "deep steeping bath tubs"! When I was in Japan it was a real delight just to lie back in those REALLY deep bath tubs and absoluely luxuriate .. heavenly!! Hope that helps! Hugs! Katherine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4584274/
One hypothesis is that this increased prevalence is related to the change in our hygiene habits from bathing to showering [17]. This was further supported by a study in Japan which investigated the distribution of MAC in domestic households. MAC was only recovered from bathrooms but not from other sites of residences and the prevalence of detection in the bathrooms of patients with pulmonary MAC was significantly higher than that in healthy volunteers’ bathrooms [18].

REPLY
Kay Strand | @kaystrand | Dec 15, 2016

Someone asked the name of the test that determines inpart what your MAC is susceptible to in terms of antibiotics- it's called a Susceptibility Panel I believe. I think most of them are sent in from all over to National Jewish and completed there. They take 8 weeks but are very important. There are many things my MAC is resistant to, so it would be a waste to take them.

Also Katherine, in have a very small area of brochiecstasis in my UPPER right lobe, very atypical as usually in lower. My pflegm seems to be from post nasal. I have no reflux, had 24 hour Impedence Test, negative. Not sure why throats pflegm, I use Mayo special nasal spray which helps. Some may be a strange habitual thing. Who knows!

Thanks
Kay

REPLY
3 replies
irene5 Irene Estes | @irene5 | Dec 15, 2016
In reply to @katemn "Kay, you are SO totally correct!! In my absolute "paranoia" .. now much to my chagrin..." + (show)
@katemn

Kay, you are SO totally correct!! In my absolute "paranoia" .. now much to my chagrin I began to try to anti mycobacterium every water source in my home! In retrospect .. SO SILLY! Luckily Dr. Aksamit brought me to my senses! Truth is NO ONE actually knows exactly how/where we get mycobacterium in our lungs. It is all over our bodies .. it is in water .. it is in the soil .. it just is NOT supposed to be in our lungs. But not enough research has been done to figure out how/why it gets in our lungs.

So my wild goose chase was silly .. fear drove me and I'm not afraid to admit it. Even if we have GERDS/reflux filtered water is not an issue/does not help. With GERDS the theory is that GERDS MAY be a breeding ground for the mycobacterium ie .. as the reflux sits there it BECOMES the breeding ground for mycobacterium. One theory only .. no one knows.

Thank you for pointing this out .. it is NOT even proven that we get iMAC/MAI from "breathing it in" showering .. just one more theory. LOTS of theories .. not one single PROVEN one. Wish there were! All we can do is take shorter showers .. no tub baths ..stay away from hot tubs .. perhaps wear a mask while gardening .. etc. The usual precautions. Hope this help? Katherine

Jump to this post

I agree 100%! Irene

REPLY
Katherine, Alumni Mentor | @katemn | Dec 16, 2016

Kay, I just LOVE having such smart people on our Forum .. not only CARING .. but SHARING their knowledge with each other! What could be greater than a community of people putting their heads together .. sharing ideas and knowledge as they gather it! As always .. two head are better than one!

I honestly KNEW our sputum cultures needed to identify WHAT particular antibiotic was effective against it .. but did not know the actual name of the test .. thank you for "MYCOBACTERIUM SUSCEPTIBILITY PANEL TESTING"! It led me to further research and an interesting articles I will share below .. more than you really want to know .. but possibly for future reference! You are just great! Hugs to you! Katherine

Susceptibility Testing for Mycobacteria

http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805http://cid.oxfordjournals.org/content/31/5/1209.fullhttp://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf
REPLY
bruce668 | @bruce668 | Dec 16, 2016
In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)
@katemn

Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google search. From what I could find "disseminated MAC disease is typically associated with defective cellular immunity such as hairy cell leukemia, chronic myelogenous leukemia and AIDS." This means it usually affects people with an already compromised immune system. Whether you have disseminated MAC or merely MAC, it is VERY important that you find a specialist who is familiar with MAC .. as MANY members of this Forum can attest to! Many members have found .. as you have .. that they have more knowledge of MAC than many of the doctors do.

That is WHY I told you it was SO important for you to do your "Due Diligence" and read past pages of this Forum to educate YOURSELF so you will truly understand your disease and it's ramifications. THEN you can seek out proper medical care for yourself and your wife. THEN you WILL NOT be put off by doctors " acting like it's nothing"! When you have educated yourself .. you will feel comfortable being your BEST medical advocate with doctors!

That said .. did you see our wonderful member Janet's .. @justjanet's recommendation of the clinic at UNC in Chapel Hill? You may also consider traveling to Mayo Clinic in Jacksonville, Florida. Might Chapel Hill or Jacksonville be an option? Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

As I told you before .. you are given but one body in this lifetime .. if you don't take care of it RIGHT NOW .. it can't take care of you for the rest of your journey in this lifetime. Bruce, I know you are in a REALLY tough time .. BUT you MUST gather together whatever energy and strength you can for this next REALLY important next step in finding the right doctor. If money is an issue .. perhaps this is the time to swallow your pride and call upon those who care about you .. explain the IMPERATIVE for you to travel to get the BEST care at this CRUCIAL point in your health. Sorry .. but this may be one of the most important decisions you may make for you and your wife. The old saying "If it is to be .. it is up to me!"

PLEASE keep us posted Bruce, we will be keeping you in our thoughts and sending the two of you LOTS of positive energy and LOTS of Hugs .. .. because all of us on this Forum have been on our own MAC journey .. and know it is a tough one .. though yours is a REALLY tough one! Katherine

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Hi @katemn , I have seen my new family doctor and got a referal to infectious disease doctor in asheville , waitting for them to call with appointment and my wife goes to pulmonary doctor on december 28. Thanks for asking!!

REPLY
Katherine, Alumni Mentor | @katemn | Dec 16, 2016
In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)
@katemn

Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google search. From what I could find "disseminated MAC disease is typically associated with defective cellular immunity such as hairy cell leukemia, chronic myelogenous leukemia and AIDS." This means it usually affects people with an already compromised immune system. Whether you have disseminated MAC or merely MAC, it is VERY important that you find a specialist who is familiar with MAC .. as MANY members of this Forum can attest to! Many members have found .. as you have .. that they have more knowledge of MAC than many of the doctors do.

That is WHY I told you it was SO important for you to do your "Due Diligence" and read past pages of this Forum to educate YOURSELF so you will truly understand your disease and it's ramifications. THEN you can seek out proper medical care for yourself and your wife. THEN you WILL NOT be put off by doctors " acting like it's nothing"! When you have educated yourself .. you will feel comfortable being your BEST medical advocate with doctors!

That said .. did you see our wonderful member Janet's .. @justjanet's recommendation of the clinic at UNC in Chapel Hill? You may also consider traveling to Mayo Clinic in Jacksonville, Florida. Might Chapel Hill or Jacksonville be an option? Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

As I told you before .. you are given but one body in this lifetime .. if you don't take care of it RIGHT NOW .. it can't take care of you for the rest of your journey in this lifetime. Bruce, I know you are in a REALLY tough time .. BUT you MUST gather together whatever energy and strength you can for this next REALLY important next step in finding the right doctor. If money is an issue .. perhaps this is the time to swallow your pride and call upon those who care about you .. explain the IMPERATIVE for you to travel to get the BEST care at this CRUCIAL point in your health. Sorry .. but this may be one of the most important decisions you may make for you and your wife. The old saying "If it is to be .. it is up to me!"

PLEASE keep us posted Bruce, we will be keeping you in our thoughts and sending the two of you LOTS of positive energy and LOTS of Hugs .. .. because all of us on this Forum have been on our own MAC journey .. and know it is a tough one .. though yours is a REALLY tough one! Katherine

Jump to this post

@bruce668, Bruce, thank you for letting you know how you are doing! It sounds like you have things covered thank heavens! Continue to keep us posted .. you are in our thoughts! Happy Holidays to both of you! Hugs! Katherine

REPLY
imeehaigt | @imeehaigt | Dec 17, 2016

@katemn I think the name of the test is drug sensitivity test, anyway I just wanted to let you know that since I joined this forum I felt lot better. I always do the lung clearance as katherine suggested and now seldom felt tightness in breathing. I just wanted to share this too since Im off from antibiotic treatment coz I have to wait for my sputum test I continued to take 1 gloves of garlic with honey 2x a day and it helps me get rid of infections. Whenever I feel itchiness in my through which is a sign of bacterial infection I immediately take garlic with honey. I will get the result of my sputum test next week hopefully its negative I will let you know as soon as I get it. By the way katherine any update about the breathing device that you are using? Hugs and kisses to everyone.

REPLY
Katherine, Alumni Mentor | @katemn | Dec 17, 2016

Imee, what good news! I am so glad you are letting us know how you are doing! I think whatever seems to work for anyone .. go for it .. each body is so different .. what will work for one might not work for another. I feel each of us must do our "due diligence" check things out and do what works for each of us!

For me, I think the
Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com
https://smile.amazon.com/gp/product/B00JWTRA5I/ref=ox_sc_act_title_12?ie=UTF8&psc=1&smid=A35MWDCY6SWWSF

has helped me so far. I actually think it is long term benefits we are looking for. Just as we exercise our bodies .. we want to exercise our lungs .. and I've never even HEARD of anything that could does it as easily! Fact is when my husband's best friend heard about it (that I was using it) .. he immediately purchased one for both himself and one for his wife. Himself because he had JUST been diagnosed with some lung issues .. his wife because she has been a professional singer and as she has aged she felt it would help her lung capacity! For $30 I personally think I is worth a shot! Hugs! Katherine

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