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.

imeehaigt | @imeehaigt | Nov 12, 2016
In reply to @imeehaigt "I just wanted to share my experience in 2014 I did undergo bronchoscopy procedure without any..." + (show)
@imeehaigt

I just wanted to share my experience in 2014 I did undergo bronchoscopy procedure without any result of lab test my doctor ASSUMED that I have MDR TB or multi drug resistant tb although my xray and xt scan is negative from TB he prescribed streptomycin and before I was discharge at the hospital he discontinued the streptomycin and asked me to take gene expert test. While I was at the DOTS clinic. For those who are not aware what DOTS is this is a govertment program for drug resistant TB patient who undergo treatment for free but they need to go the the clinic everyday to take their medicine. While I was there, I saw their patients ang they look very sick and fragile they are very thin almost like a skeleton with a skin. I already knew that I dont have TB since compared to them I look very healthy. They even asked me if who is the patient and was suprised when they learned that it was me. While waiting and observing patients around me I felt depressed and was really afraid if my result will be positive. I do not know if I can endure going there everyday and seeing this people who looks very sick. I raelly prayed for miracle and my prayers were answered Im negative from TB so they did not continue the gene expert test. I went back to my pulmonologist and he said we need to start medication while waiting for the result of my culture test. After 45 days I got the result and Im positive of NTM. After taking months and months of taking antibiotics I always tell him that I dont feel any improvement at all. he said that this is normal since it will take more than a year to cure MOTT. After 18 months my culture lab test was positive again for MOTT he again referred me to DOTS and requested for gene expert test Thats the time that I transferred to a different pulmunologist and the new pulmonologist is the one who suggested that I need to get a 2nd opinion from infectious disease specialist. I wanted to sue my ist pulmonologist Ive wasted time and money for my medicine due to his lack of knowledge about treating NTM.

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Hi@acila I live here in the philippines and gratefull that I found this forum. Information here in forum is really helpfull its nice to talk to people who undertstand what your talking and what you are going through. Ive been very diligent in going to the doctor do all the lab test needed. Im gratefull for having a medical insurance its a big help for me. I am also happy that I am single thats why I am able to afford my medication Im not a burden to any of my family member. Ive been going through this battle since 2009 and was only diagnosed of ntm 2014. I live a normal life everyday I still feel very strong physically and emotionally. PRAYING for another miracle that result of my culture test is negative I will get the result befor Christmas day. Hugs and prayers to everyone

REPLY
Hirono Sekiguchi | @hironopiro | Nov 12, 2016

Hi, @imeehaigt. Welcome to Connect!
Some members here in Mayo Connect are also from overseas, and we appreciate your comment.
I am very happy to hear that you have been feeling strong physically and emotionally.
It seems this medical condition is fairly complex and hard to diagnose.
Thank you again for sharing your experience with others.

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Katherine, Alumni Mentor | @katemn | Nov 12, 2016

Hello All! Sorry not to get back to you after requesting updates after worrying what was going on with everyone! BUT I have been out of town attending my grandson's FINAL senior college football game! They lost .. but it was a hard fought game and we are proud of him. Frankly his mom is ready to have her life back after 9 years of EVERY Saturday fall football games with two boys .. but it has been a fun 9 years .. an end of an era. But I usually don't take so long to answer so wanted you to know I didn't fall the face of the earth! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Nov 12, 2016
In reply to @katemn "Dear All! @apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David,..." + (show)
@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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Hello Rosie, thank you so much for the update! SO glad you got into see Dr. Aksamit! You can TOTALLY trust him! He puts ALL your symptoms together .. the CT scan .. the Bronchoscopy results .. the answers to the question he asks you .. ALL these things to then decide IF you need to go on the antibiotic treatment.

If you have read my recent posts you will see that I just saw Dr. Aksamit .. that YES I DO have mycobacterium in my lungs .. BUT based on all those above things I just mentioned .. he said he considers me STILL STABLE! That I am to come back for a check up in six months. I absolutely KNOW that when you see him in December ( I hope you already have your appointment set up .. he is hard to get into and appointments can only be set up 3 months in advance!) .. but when you do see him .. he WILL put the puzzle together and come up with the appropriate answer for you! SO glad you are with him! and happy you checked in! Let us know how things are after your appointment! Happy Holidays and sending you a Hug! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Nov 12, 2016
In reply to @imeehaigt "Glad to hear your ok katherine and happy thanksgiving to all. I will let you know..." + (show)
@imeehaigt

Glad to hear your ok katherine and happy thanksgiving to all. I will let you know as soon as I get the result of my culture test. I hope that the result is negative since I no longer want to take antibiotics since Im afraid of the side effects. As of now I still have excessive mucus usually early morning.Whenever I felt that I have excessive phleghm I go to the bathroom and expel the phlegm and I never had difficulty doing this it comes out easily and after doing this usually I dont cough the whole day. Im soo happy to find this forum I am a filipina and looks like no one here knows NTM. I did through researh about the disease so I can explain it to my friends and relatives. Im glad despite this illness im able to function normally so im still gratefull. MY HUGS AND KISSES TO ALL

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Hello imee! About the morning mucus .. BE SURE to do a GOOD job of coughing it up! Ask your doctor about an inhaler if you have ANY issues with bronchial tubes or breathing. Personally twice a day I take 2 puffs each of: Qvar and Atrovent. There are MANY inhalers .. it is just that those two do not trigger migraines for me.

For me .. 1st thing in the morning I use both inhalers. That ALWAYS makes me cough BIG TIME. GREAT as far as I am concerned. WHY? Because I call that two times a day (after using the inhalers) .. my "Lung Hygiene"! WHY? Because that mucus is a breeding ground for more mycobacterium to grow. The more you cough it up the better .. so cough as hard as you can and get up as much as you can .. consider it a positive thing!

Don't be afraid of the side effects .. consider the antibiotics as your friend .. killing off those critters .. the mycobacterium! Remember positive thinking helps heal your body!

Because of being Filipina and not feeling people are not knowledgeable about NTM .. that means YOU must do your 'Due Diligence" and educate YOURSELF to the best of your abilities! I strongly suggest that as you have time you read over:
an article I just recently happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
and
GOOD INFO: http://maclungdisease.org/frequently-asked-questions

Imee, SO glad you have such a great attitude and great spirit .. that will take you a long way on this journey of our disease! Just let us know how that culture comes out .. but if not what you want .. remember "Put your energy into what you can control .. and let go of what you CAN'T control". Just keep trucking along like you are doing .. keep positive .. keep happy .. stay grateful! Sending you a Hug! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Nov 12, 2016
In reply to @tdrell "boomerexpert....awesome news....and bronchoscopy is not bad....especially if he/she does alot of them...keep us posted ...good for..." + (show)
@tdrell

boomerexpert....awesome news....and bronchoscopy is not bad....especially if he/she does alot of them...keep us posted ...good for you !!!tdrell

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Hi Cila, you don't have to wait for an answer .. see the below:
RERIGERATOR FILTERED WATER AND ICE CUBES https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx
Don’t drink from built in refrigerator tap or use ice. High numbers of NTM are in refrigerator tap water and ice. In one instance, the DNA fingerprint of the isolates from the refrigerator tap water were identical to those of a patient who drank the water. The tap water coming into the refrigerator collects in a large reservoir and the warmth of the machinery warms the water (before cooling), so the reservoir has lots of NTM.

If you just boil the water from the tap for ten minutes you should be ok from what I have read. But you do have to be careful about what you then store the boiled water in of course! Hope this helps! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Nov 12, 2016
In reply to @imeehaigt "I just wanted to share my experience in 2014 I did undergo bronchoscopy procedure without any..." + (show)
@imeehaigt

I just wanted to share my experience in 2014 I did undergo bronchoscopy procedure without any result of lab test my doctor ASSUMED that I have MDR TB or multi drug resistant tb although my xray and xt scan is negative from TB he prescribed streptomycin and before I was discharge at the hospital he discontinued the streptomycin and asked me to take gene expert test. While I was at the DOTS clinic. For those who are not aware what DOTS is this is a govertment program for drug resistant TB patient who undergo treatment for free but they need to go the the clinic everyday to take their medicine. While I was there, I saw their patients ang they look very sick and fragile they are very thin almost like a skeleton with a skin. I already knew that I dont have TB since compared to them I look very healthy. They even asked me if who is the patient and was suprised when they learned that it was me. While waiting and observing patients around me I felt depressed and was really afraid if my result will be positive. I do not know if I can endure going there everyday and seeing this people who looks very sick. I raelly prayed for miracle and my prayers were answered Im negative from TB so they did not continue the gene expert test. I went back to my pulmonologist and he said we need to start medication while waiting for the result of my culture test. After 45 days I got the result and Im positive of NTM. After taking months and months of taking antibiotics I always tell him that I dont feel any improvement at all. he said that this is normal since it will take more than a year to cure MOTT. After 18 months my culture lab test was positive again for MOTT he again referred me to DOTS and requested for gene expert test Thats the time that I transferred to a different pulmunologist and the new pulmonologist is the one who suggested that I need to get a 2nd opinion from infectious disease specialist. I wanted to sue my ist pulmonologist Ive wasted time and money for my medicine due to his lack of knowledge about treating NTM.

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Hello Imee, see my other post to you about educating yourself .. the above is a perfect example! Heavens you could have been exposed to TB in all the time you were forced to go the TB Clinic .. BUT that is past .. all you can now concentrate on is getting well .. serenity .. and living life as fully as you possibly can! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Nov 12, 2016
In reply to @imeehaigt "I just wanted to share my experience in 2014 I did undergo bronchoscopy procedure without any..." + (show)
@imeehaigt

I just wanted to share my experience in 2014 I did undergo bronchoscopy procedure without any result of lab test my doctor ASSUMED that I have MDR TB or multi drug resistant tb although my xray and xt scan is negative from TB he prescribed streptomycin and before I was discharge at the hospital he discontinued the streptomycin and asked me to take gene expert test. While I was at the DOTS clinic. For those who are not aware what DOTS is this is a govertment program for drug resistant TB patient who undergo treatment for free but they need to go the the clinic everyday to take their medicine. While I was there, I saw their patients ang they look very sick and fragile they are very thin almost like a skeleton with a skin. I already knew that I dont have TB since compared to them I look very healthy. They even asked me if who is the patient and was suprised when they learned that it was me. While waiting and observing patients around me I felt depressed and was really afraid if my result will be positive. I do not know if I can endure going there everyday and seeing this people who looks very sick. I raelly prayed for miracle and my prayers were answered Im negative from TB so they did not continue the gene expert test. I went back to my pulmonologist and he said we need to start medication while waiting for the result of my culture test. After 45 days I got the result and Im positive of NTM. After taking months and months of taking antibiotics I always tell him that I dont feel any improvement at all. he said that this is normal since it will take more than a year to cure MOTT. After 18 months my culture lab test was positive again for MOTT he again referred me to DOTS and requested for gene expert test Thats the time that I transferred to a different pulmunologist and the new pulmonologist is the one who suggested that I need to get a 2nd opinion from infectious disease specialist. I wanted to sue my ist pulmonologist Ive wasted time and money for my medicine due to his lack of knowledge about treating NTM.

Jump to this post

Imee, Cila is giving you REALLY good advice! If you take time to read the pages of previous posts .. you will not only learn a great deal about our disease .. about our shared journey .. but also find a community of awfully nice supportive people!

REPLY
Katherine, Alumni Mentor | @katemn | Nov 12, 2016
In reply to @katemn "Dear All! @apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David,..." + (show)
@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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Hi Heather! Thank so much for the update! I so know what a pain the inhaled amakacin is .. I did it for thirty months .. only irritation I had because of the hassle .. BUT it did get rid of the nasty critters so I can't complain!

I had to google"aerobika" had never heard of it. Checked the reviews on Amazon.com .. seemed to help some people .. others not. What has been YOUR experience? I'm really curious because I'll try anything to get the most mucos out of my bronchial tubes. But I know for me the Acapella device didn't do a darn thing .. so wondered if this would be different? Really interested in your experience!

Glad to hear you're doing ok .. better than NOT .. right?! You're right .. it is a waiting game .. just waiting for the antibiotics to kill off those mycobacterium .. we don't have a choice .. it's us or them .. and I was NEVER going to let it be them .. we are WINNERS! Die Critters DIE!! It took me a while .. but I was patient and now I have been stable since May 2014 .. stick with it girl .. you'll be just fine! Sending you a hug! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Nov 12, 2016
In reply to @katemn "Hello Kathryn, GREAT that you are feeling a bit better! I have been thinking about your..." + (show)
@katemn

Hello Kathryn, GREAT that you are feeling a bit better! I have been thinking about your post .. this is just me .. but because of my incessant coughing .. I decided to get another opinion a while back .. went to an excellent Allergist to have allergy tests done to figure out just what I was allergic to.. maybe another reason why I was coughing so much.

I already knew from previous allergy testing that I was allergic to mold. I was absolutely POSITIVE I was allergic to dust mites and had done a bunch of things to alleviate dust mites in my home. I was tested for various things including dust mites by the allergist.

To my shock .. NOT allergic to anything much including dust mites! BUT this doctor FINALLY explained to me for the first time just what my diagnosis of “Reactive Airway Disease” meant. His explanation: If someone hits me on the head .. I am NOT allergic to being hit on the head! I am REACTING to being hit on the head! IE .. my bronchial tubes are REACTING .. being irritating .. REACTING to various irritants that I am exposed to! I am NOT allergic to those irritants .. just reacting to them!

Yesterday I asked Dr. Aksamit about this .. WHY I cough so much in enclosed spaces ie automobiles .. sitting in a theatre close to people .. a restaurant booth etc. He said the bronchial tubes can REACT to MANY things .. MANY changes .. even changes in temperature .. humidity ..etc. That my bronchial tubes were REACTING to those changes as I entered a new environment. Ok .. explained.

So, what I am thinking is: first step get an appointment with a GOOD allergist to confirm/deny any allergies you might have. If the doctor cannot come up with any allergies. Then I wonder if you are just like me .. REACTING to various irritants to the bronchial tubes? Sorry .. a real pain in the batooty but things could be worse .. LOTS of worse illnesses we could have .. right?! Hugs to you! Katherine

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Hi Kathryn, having been gyped one time by a duct cleaning company .. again do your Due Diligence in hiring one. Do some googling about "best method of duct cleaning for bacteria and allergens".

Personally because I belong to AARP .. I got a GREAT 3 year price on "Angie's List" and have hired just about any/every contractor/handyman from that website. Repeatedly they have told me they have build their business on Angie's List AND they don't dare have a negative review on it or it hurts their business. They are CORRECT .. before I hire anyone I read all the reviews .. if I find negative reviews .. forget it .. I go on to another contractor! I have no idea if there will be a duct cleaning person from Angie's lIst in your area .. just thought I'd mention what has worked for me! Hugs to you!

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