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.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 6, 2017
In reply to @ilgrp4e "Quick question. So been back and forth with my mom with her doctors in the meds..." + (show)
@ilgrp4e

Quick question. So been back and forth with my mom with her doctors in the meds for Mac. So now they're doing the two week intervals but she just started the Rifampin on Friday and this is the pill that is making her really really sick she lost 3 pounds in 3 days getting fever so I call the nurse and she suggested to stop that pill. So I got to wait for the doctor to call back but I'm guessing that maybe they'll replace that certain pill with maybe it different antibiotic. I'm just a little concerned because I know that these three antibiotics are the ones that work with treating mat so if she gets one switched his it harder and even possible for her to be treated still just wondering if anybody here has had that specific pill replace and his okay on it?
Thx, Carmen

Jump to this post

@ilgrp4e, Hi Carmen, I want to jump into this conversion.
Past experience has taught me that I had to call the doctor office every day and ask about a cancellation. Hint: Be nice, be firm. Also, you can ask to see his nurse, or at least speak with her on the phone now about your mom's current situation. I sincerely hope that your mom gets to see a medical professional soon.
Rosemary

REPLY
ling123 | @ling123 | Apr 6, 2017

Hi Katherine, I was doing a google search and this forum came up as one of the results. I can't believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I'm glad to find out from your forum that I'm not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn't as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn't thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we'd wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I'd rather not on meds if I didn't have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I'm now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.

REPLY
24 replies
irene5 Irene Estes | @irene5 | Apr 6, 2017
In reply to @ling123 "Hi Katherine, I was doing a google search and this forum came up as one of..." + (show)
@ling123

Hi Katherine, I was doing a google search and this forum came up as one of the results. I can't believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I'm glad to find out from your forum that I'm not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn't as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn't thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we'd wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I'd rather not on meds if I didn't have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I'm now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.

Jump to this post

If you have not had a CT scan and a bronchoscopy, you might want to get one. MAC does not "cure" on its own. So glad you found this forum too. Irene

REPLY
ijustdontbreathewell | @ijustdontbreathewell | Apr 6, 2017
In reply to @boomerexpert "@ilgrp4e there is an inhaled medication given when others aren't working properly: Amikacin - ask about..." + (show)
@boomerexpert

@ilgrp4e there is an inhaled medication given when others aren't working properly: Amikacin - ask about it when next w/doc

Jump to this post

I just want to say, and maybe I am out of line, and if so I really apologize I don't mean to be. You are a great daughter to be concerned, to care, and to be a fighter for your mom when she is too ill to fight for herself. What I wanted to say to you is this; I am one of the few here, though some have noted that others in their family are prone to lung disease, who went through what you are going thru my mom and my aunt both died of MAC and other complications of said disease and I do know what you are going thru and how difficult. Please do not let this frighten you , there is no evidence yet that it is hereditary, it could be coincidence . I believe that there is a forum here for caregivers, someone will probably know the answer to that. Please take care of yourself, this is not an easy thing you are doing and you will need your strength to get you both thru it. At least now things have changed and there are treatments and options. I admire your strength and perseverance and ability to reach out. Take care of you also.

REPLY
ling123 | @ling123 | Apr 6, 2017
In reply to @ling123 "Hi Katherine, I was doing a google search and this forum came up as one of..." + (show)
@ling123

Hi Katherine, I was doing a google search and this forum came up as one of the results. I can't believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I'm glad to find out from your forum that I'm not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn't as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn't thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we'd wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I'd rather not on meds if I didn't have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I'm now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.

Jump to this post

Thank for the advice, Irene. The specialist did perform the bronchoscopy 2 1/2 years ago when it first happened. He didn't find anything. Since then I have had chest X-rays once a year. No, have not had CT scan yet. I'm waiting to see what he will suggest.

REPLY
heathert | @heathert | Apr 6, 2017

Hi @katemn I seem to remember you mentioned using bleach for teeth cleaning, is it just normal bathroom cleaning bleach?

REPLY
5 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 6, 2017
In reply to @boomerexpert "@ilgrp4e there is an inhaled medication given when others aren't working properly: Amikacin - ask about..." + (show)
@boomerexpert

@ilgrp4e there is an inhaled medication given when others aren't working properly: Amikacin - ask about it when next w/doc

Jump to this post

Thank you @ijustdontbreathewell for mentioning the Caregiver group on Connect.

@ilgrp4e if you are interested in following the Caregiver group and joining the conversation there, here is the link https://connect.mayoclinic.org/group/caregivers/

REPLY
ginak | @ginak | Apr 6, 2017
In reply to @heathert "Hi @katemn I seem to remember you mentioned using bleach for teeth cleaning, is it just..." + (show)
@heathert

Hi @katemn I seem to remember you mentioned using bleach for teeth cleaning, is it just normal bathroom cleaning bleach?

Jump to this post

I think it was peroxide not bleach. I know you can use peroxide instead of water to wet your toothbrush and rinse your mouth. (It does make a lot of foam in your mouth if you rinse with it though, at least it did with me).
Gina

REPLY
ijustdontbreathewell | @ijustdontbreathewell | Apr 6, 2017
In reply to @heathert "Hi @katemn I seem to remember you mentioned using bleach for teeth cleaning, is it just..." + (show)
@heathert

Hi @katemn I seem to remember you mentioned using bleach for teeth cleaning, is it just normal bathroom cleaning bleach?

Jump to this post

<br><br><br><br><br><br><br><br>You wet your toothbrush in H2O2 rather than water and then make a paste of baking soda and a little salt to use as toothpaste, you can keep the powdered ingredients<br> together in a little tuperware container. Gosh my dentist told me this decades ago. But it works, most toothpaste has artificial sweetener in it which I am allergic to<br>J No don’t use bleach like CHlorox it is poisonous LOL<br>J A blast from the past<br>JJ<br> <br><br><br>

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