(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

Hi. This is only my 2nd time writing on this site. I have been diagnosed with MAC about a month ago, and now see a pulmonologist & a infectious disease Dr. I start my cocktail of meds on 5-2-16. Actually, I should have started them this week, but I am having such panic attacks that I am waiting until Monday, I am sooo scared. I am a caregiver to my elderly parents who are sick and an adult (34) yr old son who is handicap. I am afraid I will be too sick to take care of them. I have never been this scared in my life. I have decided if the meds, all 4 to start with make me to ill, I am going to stop taking them. I can’t imagine being so sick for the next 18 months. I think I would rather die. I am just a mess and cry constantly. Ok, I won’t bring my problems to this anymore. I just needed to get this off my chest. SCARED!!!!!

REPLY
@katemn

Melissa, I so understand how tough it is to have not just one but two! Mine was: *MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) (08/07 CULTURE) (09/11 began antibiotic treatment) and then * MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES (09/11)

Mayo Clinic at Rochester MN told me that my second mycobacterium diagnosed in 2011 was the most serious of the two (despite it being classified as a “subspecies”) and that I really must go on the antibiotics after waiting since being diagnosed in 2007.

But be assured .. after being on four antibiotics for thirty months .. I have had negative cultures since May 2014. I am blessed in finding a doctor at Mayo who specializes in MAI.

I won’t kid anyone going through this. I was so sure that all the coughing was caused by the MAI. Ok .. then when I went off the antibiotics in MAY 2011 .. why the horrific coughing?? Then I start researching the Bronchiectasis I also noticed on my medical records but ignored because the MAI was so serious.

Then was told they really don’t know .. chicken/egg scenario. MAI/Bronchiectasis. Which comes first .. which leads to the other? Do you develop Bronchiectasis first .. the mucus stays in the bronchial tubes and becomes a breeding ground for the mycobacterium .. OR does the MAI come first and develops into the Bronchiectasis? The doctors do NOT have an answer.

BUT Bronchiectasis did not seem the only answer because my coughing seemed to be SO triggered by certain things .. to me it seemed like dust .. etc. I then saw an Environmental Pulmonologist at Mayo Clinic who pointed out another thing on my medical record: Reactive Airway Disease. WHAT??? Another thing I had just ignored because of the other pressing medical issues? Yep! Well I was just positive I could get a “quick fix” by seeing an Allergist .. getting two dust mite allergy shots per week for 12-16 weeks and get FIXED!! No more coughing!

Nope! After allergy testing I was SHOCKED to find I do NOT have a dust mite allergy. The wonderful allergy doctor explained it thus: If someone hits you on the head .. you are not allergic to being hit on the head .. you are just reacting to being hit on the head so you have to avoid being hit on the head!!

This was greatly dismaying to me as I wanted my “quick fix” but finally it did make sense to me. I would just have to find a way to avoid dust mites because there is no quick fix for me. I will not bore you with the HUGE effort I have taken but I am now using a multitude of products and procedures .. it has helped but has not eliminated the coughing.

So for those of you still dealing with the beginnings of MAI .. I do not want to discourage you .. but I also don’t want to pretend the journey is without difficulties. What I will say is this .. when I was diagnosed a wonderful person told me: “If we all put our troubles in a great big circle .. more than likely most of us would take back our own troubles.” My husband and I then reminded us that we have not lost a child .. we have not lost a grandchild .. THAT would be a trouble. We will take back our troubles with an attitude of gratitude. I hope you can also. With hugs and well wishes for you all .. I know I have not written in a long time .. my husband is now in Stage 4 cancer .. but doing well so far with a new type of chemo.
Katherine

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I am new to this site and would like to participate in the discussions. Would like to hear from someone, I have the MAC and bronchiectasis also. e345l

REPLY

@cacallahan, this is exactly the place to bring such problems. Here is where you can talk frankly about your fears and concerns with people who’ve been there. Tell us a bit more about the meds you’ll be taking and what concerns you the most.
What 4 medications will you be taking?
What side effects have you been told about? Which ones concern you the most?

Liked by salena54

REPLY
@katemn

I think you were SO smart to fly from the East Coast to Minnesota Mayo Clinic! My attitude is that we are given one body in this life time .. I am willing to use my financial resources to take care of that body best I can! Good for you! Beg, borrow .. NOT steal to take care of yourself!

Jump to this post

What 5 antibiotics were you taking Katherine? I saw that in a previous
post, am new to all this so I hope I am replying right. Has your skin ever
turn bronze from using rifabutin for 9 months? I was on 3 but at a stand
still now as it didn’t stop the MAC. Don’t know what is next. e345l

REPLY

Hello 3451, no my skin did not turn bronze .. that might have been an advantage to this boring pale faced person .. BUT I was warned that my urine would have a golden cast .. which it certainly did!
In terms of the antibiotics .. keep in mind that each of us have INDIVIDUAL diagnosis! My diagnosis INCLUDED in addition to the MAI/MAC a SECOND mycobacterium: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES which is difficult to treat!

I started 10/11: Ethambutol 800mg/ Azithromycin 250mg/ Avelox 400mg/ 2-Rifampin 300mg/ Amikacin 2ml-inhaled 3x week(5xwk until 10/12) I was taken off Ethambutol 800mg 02/12 when I began to lose color and distance vision. It took about a year but I got back nearly 100% of the vision back because I had a wonderful Ophthalmologist who caught it early! How I realized the loss was that we were on a road trip .. I realized I could not read the green street or overhead freeway signs as quickly as my husband when we “tested” my vision. I immediately made an appointment. She took me off the Ethambutol 800mg as a probable cause and as I said .. it took about a year .. but my color and distance vision did return .. for which I was very grateful.

KEEP IN MIND .. because it happened to me .. DOES NOT mean it will happen to you! Each of our bodies are different and we will react differently .. like beautiful snowflakes .. we are uniquely different .. that is the beauty of our lives! Go in serenity!

REPLY
@cacallahan

Hi. This is only my 2nd time writing on this site. I have been diagnosed with MAC about a month ago, and now see a pulmonologist & a infectious disease Dr. I start my cocktail of meds on 5-2-16. Actually, I should have started them this week, but I am having such panic attacks that I am waiting until Monday, I am sooo scared. I am a caregiver to my elderly parents who are sick and an adult (34) yr old son who is handicap. I am afraid I will be too sick to take care of them. I have never been this scared in my life. I have decided if the meds, all 4 to start with make me to ill, I am going to stop taking them. I can’t imagine being so sick for the next 18 months. I think I would rather die. I am just a mess and cry constantly. Ok, I won’t bring my problems to this anymore. I just needed to get this off my chest. SCARED!!!!!

Jump to this post

Hello cacallahan, welcome! I’m so glad you have found this forum. I think you will find a great deal of comfort if you make the time to read back through previous posts .. it is just FILLED with good information about our disease .. our journey .. and you will find it is really not as scary ONCE you have a better understanding of just what it is about. Remember .. KNOWLEDGE IS POWER!! I am also a caretaker .. I call myself my husband’s “unpaid medical secretary”! He is Stage 4 cancer .. is doing well on a newly approved chemotherapy .. but also has Diabetes, heart issues etc. Life goes on!

It is IMPORTANT for you to think about the mind/body connection that is VERY strong!! When we go into situations with knowledge .. which you can gain on this forum .. a positive mental attitude .. which you can gain from the supportive people on this forum .. you will be MUCH more able to handle EACH area of your life more easily. Fear is negative energy .. feeling empowered is positive energy .. try to empower yourself. I feel for you .. because I started this journey without a forum of this nature .. I also was scared like you are .. but keep coming back here .. we are all on this shared journey. PLUS keep in mind that because I stuck with it .. I have been off antibiotics and STABLE!! since May 2014!! Yeah!! There IS light at the end of the tunnel!! Go in serenity .. seek it .. find it .. live in it!

Liked by salena54

REPLY
@colleenyoung

@cacallahan, this is exactly the place to bring such problems. Here is where you can talk frankly about your fears and concerns with people who’ve been there. Tell us a bit more about the meds you’ll be taking and what concerns you the most.
What 4 medications will you be taking?
What side effects have you been told about? Which ones concern you the most?

Jump to this post

Hi. Thanks for asking about my situation. I don’t have one single person I can talk too and I am so stressed out. The meds I am supposed to have started taking are as follows:1)AZITHROMYCIN 500 MG 2 TABS 3 X WEEK2) RIFAMPIN 500 MG 2  TABS 3 X WEEK3) ETHAMBUTOL 1200 MG 3 X WEEKSThe last one is for nausea & vomiting called ” ondansetron” 8mgI spoke with the doctors & pharmacist and they said I would be very sick by throwing up, diarrhea, dizzy & vision problems. The pharmacist said it wasn’t going to be easy at all. I am my parents caregiver & I have an adult handicap son who depends on me for everything. I am so worried I will be so sick I won’t be able to take care of anyone, and worried I will be so sick I won’t be able to go do everyday things like grocery shopping, doctor appointments. I am seriously thinking of not taking it and just putting my life in Gods hands. I already am so overwhelmed I haven’t slept in 3 days. This is too much, and all I do is secretly cry in the bathroom or in the garage. I just am beside myself.Thanks, Cheri  

Liked by salena54

REPLY
@katemn

Hello 3451, no my skin did not turn bronze .. that might have been an advantage to this boring pale faced person .. BUT I was warned that my urine would have a golden cast .. which it certainly did!
In terms of the antibiotics .. keep in mind that each of us have INDIVIDUAL diagnosis! My diagnosis INCLUDED in addition to the MAI/MAC a SECOND mycobacterium: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES which is difficult to treat!

I started 10/11: Ethambutol 800mg/ Azithromycin 250mg/ Avelox 400mg/ 2-Rifampin 300mg/ Amikacin 2ml-inhaled 3x week(5xwk until 10/12) I was taken off Ethambutol 800mg 02/12 when I began to lose color and distance vision. It took about a year but I got back nearly 100% of the vision back because I had a wonderful Ophthalmologist who caught it early! How I realized the loss was that we were on a road trip .. I realized I could not read the green street or overhead freeway signs as quickly as my husband when we “tested” my vision. I immediately made an appointment. She took me off the Ethambutol 800mg as a probable cause and as I said .. it took about a year .. but my color and distance vision did return .. for which I was very grateful.

KEEP IN MIND .. because it happened to me .. DOES NOT mean it will happen to you! Each of our bodies are different and we will react differently .. like beautiful snowflakes .. we are uniquely different .. that is the beauty of our lives! Go in serenity!

Jump to this post

Thank you Katherine for responding to my post. I was on rifampin and
ethambutol and azithromycin for 1 year, it didn’t stop the spread of the
mac besides having bronchitatsis. So then I met with Dr. Aksamit, he is
wonderful, knowledgeable and kind, the best! I was taken off azithromycin
and rifampin, which turned my urine yellow, and put on claritromycin and
rifabutin and ethambutol again. The rifabutin I feel turned my skin
bronze. I was on those meds since last June. I had to go to the
ophthalmologist every 3 months. Now I wonder about my eyes as I too can
not read the green overhead signs or the smaller ones. The eye doctor
would always ask me if my sight has changed, I did mention I couldn’t read
the street signs until I was right below them. I wasn’t taken off
ethambutol though. Just recently the concern over the bronze skin color,
the doctor took me off all 3 meds plus crestor. I was wondering if anyone
else out there took rifabutin and if their skin as well as urine turned
bronze. I am getting some more tests done to figure the yellowing all out.
I seen that you did the amikacin 2 ml inhaled 3 x a week plus. Did that
have clofazimine in it? I guess there is a possible enrollment into the
liposomal amikacin trial. How was that? Was it awful? Bad taste in your
mouth? Please tell me something about it as I think I might be going to be
doing something like that.

Since I was due for cataract surgery, that might be why I couldn’t see
that well. I have had it done, will see if the signs are any better when
I get my new glasses.

Do you have to have oxygen? I have difficulty with shortness of breath
after a brief walk, very brief. But my oxygen level is 98, that’s good.
I am not on oxygen, thank the lord. My only problem is being tired and
sleeping for 2 1/2 hours most every day. My appetite isn’t very good, but
I eat small portions, did you lose weight at all? I did. Am now taking
Ensure, Enlive with lots of good nutrients in it. So thankful you take the
time to answer people. You are a saint!

REPLY

Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit .. all you really have to do is just work with him. Keep notes about your concerns prior to your appointment .. listen to what he says .. make notes as he answers you .. then do EXACTLY what he tells you to do. That is what I did. I have absolute TOTAL confidence in him .. he is the Guru of our disease. Frankly .. if he can’t help you/me I don’t know who can. That said ..

You will ALWAYS have the Bronchiectasis .. if you do some googling you will find it is .. putting it in a simple manner .. a scarring of the bronchial tubes. It is a chronic condition that is VERY important to keep our airways healthy and as clear as possible through exercise etc because it is a breeding place for future mycobacterium to return. Because I was so concerned about the MAI/MAC I didn’t pay much attention to the Bronchiectasis until I became stable with the MAI/MAC .. now I know the importance of keeping the bronchial tubes as healthy and clear as possible.

In terms of the inhaled Amikacin .. as I recall that was for my 2nd serious mycobacteria which was an “abscesses” type . . so most people would never have to take that .. plus it was a pain in the patooty! Unless you have that CERTAIN type of mycobacterium I would not understand why you would take it!! FIRST talk to Dr. Aksamit!!

I googled: does Amikacin have clofazimine in it .. got: Clofazimine has been used as a replacement for rifampin, with similar …. we did encounter M. abscessus isolates .. http://aac.asm.org/content/56/12/6324.full

Frankly I wouldn’t give a darn about the bronze skin color or urine color if it was going to help with the MAI/MAC .. I’d have the attitude .. GET MY PRIORITIES IN ORDER!! Health is first!

I WOULD contact Dr. Aksamit’s re: any vision loss immediately. My opinion.

It was a normal part of my routine to get monthly blood tests .. quarterly vision and hearing tests sent to Dr. Aksamit.

I was told by someone I trust that Crestor was bad news .. I take Lipitor 20mg every other day in a.m. for my particular situation .. that is just my particular body. I have made the PERSONAL choice that as long as my cholesterol is at or below 200 I am not going to take any more than I am .. there are side effects to all drugs and I am already taking the max I want to!

Cataract surgery was a piece of cake for me! I had a contact lens prior to that “MONO VISION” .. one eye read and the other eye saw distance. Not everyone can adjust to that .. but I loved that as I reached middle age and only needed reading glasses. So when I had the cataract surgery .. they put a reading lens in one eye .. a distance lens in the other .. AND at age 73 I do not need glasses .. LOVE IT!!

I do not need oxygen. My oxygen level in in the high 90’s .. I try to work out on my Nordic Track as frequently as I can (NOT as often as I should!) and try keep my lungs as healthy as possible.

Yes fatigue is a part of our journey .. we MUST take care of our bodies .. so our bodies can take care of us! Our immune systems are compromised .. has to work just that much harder to take care of us. Be kind to it. Personally I try to sleep till I wake up. Usually that is about 10 hours per day. I wish it was less .. but it is what it is!

I lost 18% of my body weight at the height of my MAI/MAC .. I kept it from getting worse .. now I DO NOT tell anyone else to do this .. but I ate ice cream every night (LOVE IT!) and ate bacon for breakfast. I happen NOT to have a body that creates cholesterol and it did not create havoc on my body. AND when I became stable .. I quit that habit .. cannot even have ice cream in the house now or I’d eat it .. love the stuff! Ensure is a MUCH better idea .. I was just looking for a good excuse for ice cream at the time!!

Ok, it’s late at night .. I’m tired .. I think I answered all your questions .. hope it helps! Keep in mind .. we have all gone through this journey .. it really is not all that bad .. there truly is a light at the end of the tunnel .. you’ll get there! Just keep putting one foot in front of the other! As I keep telling my husband .. “KEEP SEEING RAINBOWS!”

Sending you Hugs, Katherine

REPLY
@katemn

Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit .. all you really have to do is just work with him. Keep notes about your concerns prior to your appointment .. listen to what he says .. make notes as he answers you .. then do EXACTLY what he tells you to do. That is what I did. I have absolute TOTAL confidence in him .. he is the Guru of our disease. Frankly .. if he can’t help you/me I don’t know who can. That said ..

You will ALWAYS have the Bronchiectasis .. if you do some googling you will find it is .. putting it in a simple manner .. a scarring of the bronchial tubes. It is a chronic condition that is VERY important to keep our airways healthy and as clear as possible through exercise etc because it is a breeding place for future mycobacterium to return. Because I was so concerned about the MAI/MAC I didn’t pay much attention to the Bronchiectasis until I became stable with the MAI/MAC .. now I know the importance of keeping the bronchial tubes as healthy and clear as possible.

In terms of the inhaled Amikacin .. as I recall that was for my 2nd serious mycobacteria which was an “abscesses” type . . so most people would never have to take that .. plus it was a pain in the patooty! Unless you have that CERTAIN type of mycobacterium I would not understand why you would take it!! FIRST talk to Dr. Aksamit!!

I googled: does Amikacin have clofazimine in it .. got: Clofazimine has been used as a replacement for rifampin, with similar …. we did encounter M. abscessus isolates .. http://aac.asm.org/content/56/12/6324.full

Frankly I wouldn’t give a darn about the bronze skin color or urine color if it was going to help with the MAI/MAC .. I’d have the attitude .. GET MY PRIORITIES IN ORDER!! Health is first!

I WOULD contact Dr. Aksamit’s re: any vision loss immediately. My opinion.

It was a normal part of my routine to get monthly blood tests .. quarterly vision and hearing tests sent to Dr. Aksamit.

I was told by someone I trust that Crestor was bad news .. I take Lipitor 20mg every other day in a.m. for my particular situation .. that is just my particular body. I have made the PERSONAL choice that as long as my cholesterol is at or below 200 I am not going to take any more than I am .. there are side effects to all drugs and I am already taking the max I want to!

Cataract surgery was a piece of cake for me! I had a contact lens prior to that “MONO VISION” .. one eye read and the other eye saw distance. Not everyone can adjust to that .. but I loved that as I reached middle age and only needed reading glasses. So when I had the cataract surgery .. they put a reading lens in one eye .. a distance lens in the other .. AND at age 73 I do not need glasses .. LOVE IT!!

I do not need oxygen. My oxygen level in in the high 90’s .. I try to work out on my Nordic Track as frequently as I can (NOT as often as I should!) and try keep my lungs as healthy as possible.

Yes fatigue is a part of our journey .. we MUST take care of our bodies .. so our bodies can take care of us! Our immune systems are compromised .. has to work just that much harder to take care of us. Be kind to it. Personally I try to sleep till I wake up. Usually that is about 10 hours per day. I wish it was less .. but it is what it is!

I lost 18% of my body weight at the height of my MAI/MAC .. I kept it from getting worse .. now I DO NOT tell anyone else to do this .. but I ate ice cream every night (LOVE IT!) and ate bacon for breakfast. I happen NOT to have a body that creates cholesterol and it did not create havoc on my body. AND when I became stable .. I quit that habit .. cannot even have ice cream in the house now or I’d eat it .. love the stuff! Ensure is a MUCH better idea .. I was just looking for a good excuse for ice cream at the time!!

Ok, it’s late at night .. I’m tired .. I think I answered all your questions .. hope it helps! Keep in mind .. we have all gone through this journey .. it really is not all that bad .. there truly is a light at the end of the tunnel .. you’ll get there! Just keep putting one foot in front of the other! As I keep telling my husband .. “KEEP SEEING RAINBOWS!”

Sending you Hugs, Katherine

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Hi Katherine…I am so grateful for your posts. You have helped me so much!
I too was diagnosed with bronchiectasis and mycobacterium abscessus in Dec
2015. I have not started on the meds yet. I’ve been terrified about
starting the meds. You have inspired me that I can do it…it will work
out. I have a couple questions…did your Dr recommend any particular
vitamins we should be taking? I’ve had a base line hearing test but no eye
test. I’m adding it to my list of questions. I don’t want my vision
affected.
Your advise has been so helpful and helped me understand this terrible
disease.I live in another state but I’m going to try to get an appt with
your Dr and hope to coordinate my treatment here in Ohio. Hope you don’t
mind but I will probably have more questions for you. Thanks again for
giving me the inspiration to fight this disease. You’ve been awesome!!!!
Your grateful friend Tutti

REPLY

Hi Tutti,
So glad you found our forum! Because Dr. Aksamit is so busy I would suggest you call ASAP because it will be a bit of time before you can get in .. but waiting for him is absolutely WORTH IT!! We were spending 6 months a year at a winter home and Dr. Aksamit FAITHFULLY sent a follow up copy of our appointment to my winter Pulmonologist .. BUT I never considered any doctor my primary EXCEPT for Dr. Aksamit .. and made every follow up appointment with him. I make my schedule work to accommodate his in getting an appointment!

You can ask Dr. A about vitamins .. but truthfully I have never found a doctor that much believes in them so never asked him .. BUT I personally am a BIG believer in them. This is just me personally .. but I read one time that Americans have the most expensive urine in the world! Ie that whatever vitamins your body does not need .. you excrete them through your urine. That is MY personal philosophy .. SO I am CAREFUL NOT to take more than the recommended fat soluble viamins (The fat-soluble vitamins, A, D, E, and K, are stored in the body for long periods of time and generally pose a greater risk for toxicity when consumed in excess than the water-soluble vitamins.) But I take plenty of the other water soluble vitamins. Personally I take the generic CENTRUM SILVER .. BUT I ALWAYS compare the generic with the actual Centrum Silver. I have found some generic brands sneaky! They are NOT equivalent! I have also added various water-soluble vitamins .. but do not feel comfortable advising .. to each their own. I would add that because I have some blood in my coughing Dr. A advised me to stop fish oil and baby aspirin .. anything that is blood thinning.

DEFINITELY ALWAYS get baseline hearing and vision tests prior to starting MAI/MAC meds. AND ALWAYS request a copy of each of your tests. 1. For your personal records for future use 2. To share with any doctors who might want to see them 3. In case you want to change doctors 4. To take with you when you travel

Tutti, you call this a “terrible disease”. I will share with you something wonderful that was shared with me when I was diagnosed. It was “If we all put our troubles in a great big circle .. more than likely EACH of us would take back our own troubles!”

Now isn’t that just wonderful?! Each time I go to Mayo Clinic in Rochester MN .. see what I see there .. the people with BIG problems .. I repeat that saying to myself .. YES! I absolutely WOULD take back my own troubles! There are SO MANY people in this big world who have SO MANY bigger problems than I have. I have SO many wonderful blessings in this beautiful world we share .. this disease is just a lousy inconvenience I have to get through! There is a thought that each evening we should out loud state 3 “gratitudes” for that day .. maybe just that someone smiled at us that day .. that there was sunshine that day .. OR didn’t rain that day .. or a beautiful sunrise .. or sunset .. or you saw a beautiful flower .. or you spoke with a supportive friend .. OR whatever .. SEARCH for a gratitude! They are there if we just look for them! Being positive helps us get through life in a happier way .. when you wake up in the morning .. it is my opinion .. I can CHOOSE TO BE HAPPY! So I DO!! You can also!

Liked by trouble4343

REPLY
@katemn

Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit .. all you really have to do is just work with him. Keep notes about your concerns prior to your appointment .. listen to what he says .. make notes as he answers you .. then do EXACTLY what he tells you to do. That is what I did. I have absolute TOTAL confidence in him .. he is the Guru of our disease. Frankly .. if he can’t help you/me I don’t know who can. That said ..

You will ALWAYS have the Bronchiectasis .. if you do some googling you will find it is .. putting it in a simple manner .. a scarring of the bronchial tubes. It is a chronic condition that is VERY important to keep our airways healthy and as clear as possible through exercise etc because it is a breeding place for future mycobacterium to return. Because I was so concerned about the MAI/MAC I didn’t pay much attention to the Bronchiectasis until I became stable with the MAI/MAC .. now I know the importance of keeping the bronchial tubes as healthy and clear as possible.

In terms of the inhaled Amikacin .. as I recall that was for my 2nd serious mycobacteria which was an “abscesses” type . . so most people would never have to take that .. plus it was a pain in the patooty! Unless you have that CERTAIN type of mycobacterium I would not understand why you would take it!! FIRST talk to Dr. Aksamit!!

I googled: does Amikacin have clofazimine in it .. got: Clofazimine has been used as a replacement for rifampin, with similar …. we did encounter M. abscessus isolates .. http://aac.asm.org/content/56/12/6324.full

Frankly I wouldn’t give a darn about the bronze skin color or urine color if it was going to help with the MAI/MAC .. I’d have the attitude .. GET MY PRIORITIES IN ORDER!! Health is first!

I WOULD contact Dr. Aksamit’s re: any vision loss immediately. My opinion.

It was a normal part of my routine to get monthly blood tests .. quarterly vision and hearing tests sent to Dr. Aksamit.

I was told by someone I trust that Crestor was bad news .. I take Lipitor 20mg every other day in a.m. for my particular situation .. that is just my particular body. I have made the PERSONAL choice that as long as my cholesterol is at or below 200 I am not going to take any more than I am .. there are side effects to all drugs and I am already taking the max I want to!

Cataract surgery was a piece of cake for me! I had a contact lens prior to that “MONO VISION” .. one eye read and the other eye saw distance. Not everyone can adjust to that .. but I loved that as I reached middle age and only needed reading glasses. So when I had the cataract surgery .. they put a reading lens in one eye .. a distance lens in the other .. AND at age 73 I do not need glasses .. LOVE IT!!

I do not need oxygen. My oxygen level in in the high 90’s .. I try to work out on my Nordic Track as frequently as I can (NOT as often as I should!) and try keep my lungs as healthy as possible.

Yes fatigue is a part of our journey .. we MUST take care of our bodies .. so our bodies can take care of us! Our immune systems are compromised .. has to work just that much harder to take care of us. Be kind to it. Personally I try to sleep till I wake up. Usually that is about 10 hours per day. I wish it was less .. but it is what it is!

I lost 18% of my body weight at the height of my MAI/MAC .. I kept it from getting worse .. now I DO NOT tell anyone else to do this .. but I ate ice cream every night (LOVE IT!) and ate bacon for breakfast. I happen NOT to have a body that creates cholesterol and it did not create havoc on my body. AND when I became stable .. I quit that habit .. cannot even have ice cream in the house now or I’d eat it .. love the stuff! Ensure is a MUCH better idea .. I was just looking for a good excuse for ice cream at the time!!

Ok, it’s late at night .. I’m tired .. I think I answered all your questions .. hope it helps! Keep in mind .. we have all gone through this journey .. it really is not all that bad .. there truly is a light at the end of the tunnel .. you’ll get there! Just keep putting one foot in front of the other! As I keep telling my husband .. “KEEP SEEING RAINBOWS!”

Sending you Hugs, Katherine

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Hi Katherine,

Glad to hear from you! I did want to mention, Dr Aksamit said I would be a
good candidate for that amikacin test trial. That’s why I am asking about
it. He ordered some test in May that will tell him about the color of my
skin, my weight loss, poor appetite, tiredness, which all the doctors are
concerned about as I deteriorated a lot. If there could be an underlying
problem! I am referring to my gp doctor, my dermatologist, and the lung
doctor down here who are keeping tabs on all this. The ritual of pills I
took didn’t stop the bacteria. I forgot about the hearing too, I do have a
hearing aid but forgot if I was supposed to be tested every so often like
the eyes. But temporary I am off ethambutol. My sister use to tell me get
off Crestor but I wanted doctors orders to stop taking it and doctor
Aksamit took me off. That’s a question for Dr Aksamit. However I won’t
see him in May until he has time to study the test I am taking.

Hugs to you too, I am 76, healthy all my life until 6 yrs ago! I am
grateful for that as for many other things. More later, really enjoy
visiting with you!

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Hello e345l, will it be inhaled Amikacin if you go on it? If so .. let me know and I’ll let you know a couple of time saving things I did when I was on it! I know it took 30 months .. BUT the Amikacin finally licked that darn “abscesses” mycobacterium so in the end all the trouble was worth it! Good luck as we go forward on our shared journey!

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HEY! I Mentioned in an earlier post that any doctor I have talked to didn’t seem to have a positive attitude toward additional vitamin intake .. EAT HEALTHY was what I usually got. BUT as I mentioned .. I still did my due diligence and took them anyway .. BECAUSE I just don’t think science has caught up with the complexity of the human body yet .. or certainly won’t in my lifetime! SO .. lo and behold .. just read this article .. interesting!!
http://www.newsweek.com/vitamin-stops-aging-process-organs-study-453526

This is just one little nugget of info!

Don’t know if anyone is interested .. but I found it fascinating! My son sent me this link to a course he is attending next week. Amazing to me .. a woman who grew up in Montana without running water .. NOW my son is attending this kind of thing .. WOW! The changes in the world are just astounding!! Watch the video .. it will blow your mind .. wish I was 25 years younger and attending!

http://singularityu.org/executive-program/
Best to all! Katherine

Liked by emmur16

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@katemn

Hello e345l, will it be inhaled Amikacin if you go on it? If so .. let me know and I’ll let you know a couple of time saving things I did when I was on it! I know it took 30 months .. BUT the Amikacin finally licked that darn “abscesses” mycobacterium so in the end all the trouble was worth it! Good luck as we go forward on our shared journey!

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Hi Katherine,
I believe it is the inhaled one. In my notes from Dr A. he mentioned
pending clinical response from what they are doing May 15th, there’s a
possible enrollment into the liposomal amikacin versus off label amikacin
with or without clofazimine which has rifampin which I was on a full year
and did no good and switched to rifabutin for 10 months which was stronger
and no results yet. Please tell me everything you can about this
amikacin. I believe I was told it was inhaled. I really appreciate the
links you sent me, I haven’t read it yet but plan on doing that today. I
don’t know how to find this type of information and you can find it! It
seems I am absent minded a lot anymore!

Have you heard of the Leprosy drug or shot? They considered that but that
too turns your skin very dark! And it isn’t approved by the FDA. They
said it was safe. I just don’t like the name of it, fear of looking like
a leper! They assured me that wouldn’t happen!

You mentioned the hearing problem and this morning my ears are so plugged
up! For 3 hours! They have never been plugged up before, don’t know why.
I have been off ethambutol and the other meds for 4 weeks now so I
shouldn’t experience any ear trouble. Yours was mostly loss of hearing?
Today I am getting a sonogram on my carotid artery that was operated on
about 7 years ago. Hope that isn’t plugged again. I won’t do that
operation again!

My skin is turning back to normal and I won’t have t hat nice suntan look!
Darn. I figured it is the rifabutin but they want to check to see if any
other damage has been done.

Thanks again for sharing

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