(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

@katemn

@imeehaigt .. imee, you are SO lucky!! Philippines is listed on the company website as : country safe to purchase from. Lucky you .. it really does help! I prefer the 75mg time release .. can you get that form there? Curious .. what is the cost? Hugs! Katherine

Jump to this post

Boomer, this is JUST me .. but I prefer the Time Release 75mg Ambroxal Musosolvan that I can get when I can walk right into a pharmacy I know I can trust .. I search until I can get it .. so it stays in my body ! Just me. If the day comes when I have no other option .. who knows! Katherine

REPLY
@katemn

@imeehaigt .. imee, you are SO lucky!! Philippines is listed on the company website as : country safe to purchase from. Lucky you .. it really does help! I prefer the 75mg time release .. can you get that form there? Curious .. what is the cost? Hugs! Katherine

Jump to this post

Aww Im glad you researhed it, I used to have drug store I still have my license but im not sure how much it will cost if it will be shipped via fedex I will let you know once I visit manila and maybe I can buy for you and shipped it via fedex or if I have relatives travelling to US that they can just send it to you.

REPLY

@jula73, Jula .. I am assuming that is your first name .. PLEASE correct me if I am not correct! I am going to answer you on our Main MAC page because I want you to get LOTS of support from our wonderful Community of caring people! You said: I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I’m looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a post op surgical floor, in nursing homes and for many years as an occupational health nurse.
=====
Jula, I am REALLY glad you found us! Welcome! It sounds like you have REALLY been through the wringer with all your health issues .. some that seem to go hand and hand with MAC. MANY of our Group have RA and GERD. I am hoping someone will jump in on the ” loss of voice or raspy voice”.

You may be new to MAC .. but trust me .. we have ALL been on this journey .. all of us at a different point .. but all on this shared journey .. we are here to help you .. support you in any way we can. We have “been there .. done that”. Know how scary it is in the beginning .. BUT have come through that time .. KNOW there is a light at the end of the tunnel. Know what that light is? Knowledge! Knowledge is POWER! Knowledge is learning to advocate for yourself. Knowledge is TAKING BACK your power over your health care! How do you do that? By reading through the past pages of our Forum .. JUST like you seem to be doing! CONTINUE to do that .. read the Connect Forum to educate yourself to our shared MAC disease?! Yes, of course you will! Then as you read .. feel free to come back with ALL your questions .. we are here for you EVERY step of the way. We know where you are right now .. how you feel .. how tough it is .. BUT we also know where you are going .. AND how you are going to get there!! BECAUSE we HAVE DONE IT!! We will walk this walk with you .. just keep coming back with your questions ,… concerns .. cares. We will be here. Sending you a hug in this tough time! Katherine

REPLY
@katemn

@jula73, Jula .. I am assuming that is your first name .. PLEASE correct me if I am not correct! I am going to answer you on our Main MAC page because I want you to get LOTS of support from our wonderful Community of caring people! You said: I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I’m looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a post op surgical floor, in nursing homes and for many years as an occupational health nurse.
=====
Jula, I am REALLY glad you found us! Welcome! It sounds like you have REALLY been through the wringer with all your health issues .. some that seem to go hand and hand with MAC. MANY of our Group have RA and GERD. I am hoping someone will jump in on the ” loss of voice or raspy voice”.

You may be new to MAC .. but trust me .. we have ALL been on this journey .. all of us at a different point .. but all on this shared journey .. we are here to help you .. support you in any way we can. We have “been there .. done that”. Know how scary it is in the beginning .. BUT have come through that time .. KNOW there is a light at the end of the tunnel. Know what that light is? Knowledge! Knowledge is POWER! Knowledge is learning to advocate for yourself. Knowledge is TAKING BACK your power over your health care! How do you do that? By reading through the past pages of our Forum .. JUST like you seem to be doing! CONTINUE to do that .. read the Connect Forum to educate yourself to our shared MAC disease?! Yes, of course you will! Then as you read .. feel free to come back with ALL your questions .. we are here for you EVERY step of the way. We know where you are right now .. how you feel .. how tough it is .. BUT we also know where you are going .. AND how you are going to get there!! BECAUSE we HAVE DONE IT!! We will walk this walk with you .. just keep coming back with your questions ,… concerns .. cares. We will be here. Sending you a hug in this tough time! Katherine

Jump to this post

Hi Jula: When I had bad gerd, with hiatal hernia, my voice got raspy also. May be the acid in your throat. i stopped eating at night, and went low fat and it is controlled now. Also, sleep on left side a lot. xo

REPLY
@katemn

@imeehaigt .. imee, you are SO lucky!! Philippines is listed on the company website as : country safe to purchase from. Lucky you .. it really does help! I prefer the 75mg time release .. can you get that form there? Curious .. what is the cost? Hugs! Katherine

Jump to this post

@imeehaigt, Imee, I REALLY question if drugs would get over the border with all the drug trafficking!! AND if it would be worth it for your FAMILY or us!! It might seem legit and simple to us .. BUT just think of the consequences!! Too scary to me frankly. You just get YOUR supply when you go home .. EACH of us be responsible for our OWN supply of . DO NOT get ANYONE in trouble trying to be helpful! Per Mama Katherine! Hugs to all! Katherine

REPLY

@unicorn .. Christa Good information .. thank you! I also find I cough less when I sleep on my left side. Hug! Katherine

REPLY
@imeehaigt

Just last Sunday I did exercised at home and did my daily deep breathing excercise. As Ive said before its been over a month that I stopped producing sticky phlegm since I started to excercise everyday. When I cleared my lungs and tried to expel sputum I noticed a blood in my sputum I got alarmed again and was thinking of taking anti biotics. I am pretty sure that I dont have lung infection since I can always feel if there is an infection I usally smell something different or have difficulty breathing. There is a possibility that this only happened because I forced to cough. So decided to stay calm and observe it I did not take antibiotics, instead I continued to take 1 gloves or garlic and drink fresh aloe vera. This is an experiment lol I dont want to use antibiotics if it is not necessary. So far im still feeling good and no blood now in my sputum. I will let you know if what will happen next. I know this is kinda risky but my body and mind is telling that I dont need those meds this time. Happy 4th to everyone!

Jump to this post

Katemn….great question….where does my mucus come from if not an active pulmonary NTM infection. I assume a combination from
-chronic allergicq rhinorrhea….when pulmonologist at NJH was doing a laryngoscopy on my nose he noted and put it in the written summary “there was a copious amount of mucopurulent material present thru out” i already use steroid nose sprays as well as antihistamine nasal sprays as well as oral ones.
-esophagram I had over a year ago showed when i eat the food does not enter into the stomach at the normal speed…..it sits a long time….i notice more mucus coughed up after eating.
– i have allergies.
The above is my interpretation?…tdrell

REPLY
@imeehaigt

Just last Sunday I did exercised at home and did my daily deep breathing excercise. As Ive said before its been over a month that I stopped producing sticky phlegm since I started to excercise everyday. When I cleared my lungs and tried to expel sputum I noticed a blood in my sputum I got alarmed again and was thinking of taking anti biotics. I am pretty sure that I dont have lung infection since I can always feel if there is an infection I usally smell something different or have difficulty breathing. There is a possibility that this only happened because I forced to cough. So decided to stay calm and observe it I did not take antibiotics, instead I continued to take 1 gloves or garlic and drink fresh aloe vera. This is an experiment lol I dont want to use antibiotics if it is not necessary. So far im still feeling good and no blood now in my sputum. I will let you know if what will happen next. I know this is kinda risky but my body and mind is telling that I dont need those meds this time. Happy 4th to everyone!

Jump to this post

@tdrell, hmmm Terri, aren’t our bodies SOOO DARN complicated! Thank you for the explanation! Yes it explains it .. BUT I sure don’t envy you . . but then again .. most of us don’t have a “great and wonderful” journey of it .. right?! BUT “attitude of gratitude” it could all be SO much worse for ALL of us! Hugs! Katherine

REPLY

@irene5, Irene,@virtuous69, @cindyrnc, Cindy @windwalker and @ling123, Ling I just found an interesting article that I just placed under “Discussions” .. it is a bit technical .. BUT I think it answers a LOT of questions about MAC/MAI .. would you take a few minutes and glance over it .. see if you think it might help our Group at all .. give me your opinions? I value your input on this!! Hugs! Katherine
https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/

REPLY

I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I’m looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a postop surgical floor, in nursing homes and for many years as an occupational health nurse.

REPLY

Hi just wanted to let you know that I am now Ok no blood stain in mucus, I still have phlegm though but it is clear not yellowish. So I just continued my deep breathing excercise. Have a great weeek ahead everyone!

REPLY

@katemn Hi Kate. I do not regularly follow this thread because there are so many posts and I often do not have the time, but I am curious about one thing. I can remember reading or perhaps seeing on TV a story about a young girl who had something where once or twice a day she had to lay on her bed, face down with her face hanging off the bed and one of her parents would thump her back to help bring up mucus. Would that have been MAX/MAI?
JK

REPLY
Please sign in or register to post a reply.