(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!

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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

@suzie2017

My husband had his bronchoscope yesterday. The report shows terms that I am not familiar with. The doctor came out to talk to me but rattled on so fast and I was unable to compare what he said to the report. Here are some of the phrases in the report. Left lower lobe collapsed lung and pushing against the heart, abnormal left main stem bronchus (report goes on to say the same thing about right, left upper, left lower, right upper right middle and right lower lobes) including the subsequent. Washings were obtained in the entire tracheobronchial tree and return was cloudy. Doctor used the words “milky” and said it could represent a new infection. Area of chronically inflamed mucosa was found throughout the tracheobronchial tree. Mucous was copious, green, mucopurulent and thick, underlying mucosa is friable, extrinsic compression was found in the left lower lobe segment. No attempt to do TBBrushing of LLL segment due to friable bronchial mucosa (must mean blood). Does all of this point to end of stage COPD?

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@suzie2017 I am glad to hear that Jess' fever came down. That could mean that the anti-biotics are kicking in. Just keep an eye on the blood amount, especially since it is close to the limit for going to the E.R. I know that the weight loss is scary. I went from 142 lbs to 116. If your husband's lung infection can get under control, his weight should come back. (I am now at 132 lbs) Do you also have a pulse oxometer to monitor his oxygen level and heart rate? If not, they can be purcjasrd at a drug store or ordered online. They are a lot cheaper online. A decent one online will run $21 00. They are good to have on hand so that you can have a real handle on his condition. I mention this because you questioned if he could be in end stage COPD. It sounds like you are doing your best to take care of him. I bet he really appreciates it. Sending you hugs -Terri

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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No, neither of us is eligible for Medicare. Kaiser wouldn't approve the referral. We took all the records and CT Scans. The physician we saw did do an initial consultation and evaluation. She wasn't sure that the MAC was still active but wanted to do another CT Scan, which made sense. She thought some of my husband's symptoms might be caused by something unrelated to MAC, therefore the extensive tests, which would have cost a lot more than our initial payment.

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@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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Hi again. It has been a long year!! My mother lives in Vegas and was visiting Flaggstaff, AZ when she started coughing up a cup of blood at a time. The hospital had her scheduled 3 times to get a lobectomy, "on her lower left lobe" and she refused because she could tell the bleeding had slowed way down and stopped. After 4 days in the hospital they sent her down to Mayo-AZ in Pheonix area. When the doctor at Mayo did a scope told her "Good thing you refused the lobectomy, you bleed was from your right middle lobe". This is how my Mother's MAC started showing symptoms for the 1st time. Please understand I have been a Paramedic in Emergency Medicine for the last 10 years and this one even boggles my mind.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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Thank you Terri. My husband does seem to be getting better as far as the amount of blood he is spitting up in his phlem. Last evening there wasn’t any blood showing. I am amazed that he feels as good as he does. Yes, we have an oximeter to keep tabs on his oxygen level. He is normally around 93 when he is on oxygen and then he goes in to the mid 80’s when he is off. I take his temp AM and PM for the ID Doctor and it has really been running low. Off and on around 95.8 – 97.8. He continues to eat well. I am glad to hear that you have gained some of your weight back. Do you also feel better? Are you continuing on antibiotics or do you have your Mac under control. You are great to respond to everyone.

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@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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@1478 LOL, Mac boggles everybody's minds. Doctors and scientists too. Mac tends to morph so it is difficult to stay ahead of it. It is an evil bacteria, but it intriques me.

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@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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@1478 As I had said before, I am glad that your mother refused the lobectomy. There is another treatment for badly bleeding lungs that we discussed before on here. It had the word xray in it. Lets ask the others if they recall that info. In the meantime, I will try to find it. I believe it may be some type of cauterizing. So, how did they stop the bleeding, or did it just stop on it's own?

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@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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Yes, it did stop on its own for the most part. This is an intriguing little nasty bacteria. I have read some new studies from Universities studying Tuberculosis and They have developed a mimic bacteria that when the TB virus morphs into it, the good bacteria will eat the TB. This is just the beginning, may take awhile to get out. I really think the medical community needs to develop an Immunotherapy treatment for MAC. The body was created to fight this Avium complex bacteria. When the immune system is compromised it seems to have a hard time getting rid of the MAC that hides deep in the lungs and has a hard protective shell. We need to develop a way to boost our own immune system to fight this bacteria get rid of the antibiotic treatment!! Praying for BIG help on this.

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@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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Agreed!

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@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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@1478 That is interesting news. I would like to know more about it. I always thought it would take an enemy bacteria to gobble up the mac.

Liked by heathert

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@suzie2017 Thank you. I am glad to hear that he is perking up.Aside from the pinched nerve in my back; I feel great. My energy level comes and goes. I haven't coughed in two years. (I used to cough non-stop for years) I decided to take a break from all meds because I feel so good. I stopped taking my antibiotics in February. My doctor does not know this yet. I go for a sputum test in a few weeks. I just want to get an idea if the infection is really gone at this point. After my tests, I plan to go back on my antibiotics as a preventative measure. My doses are small and no side effects. I felt like my body was asking for a break.i even stopped my heart meds. I have found that now that my lungs are clear, my heart isn't being taxed and I no longsr have the arrhythmias. I will start back on my nebulized saline tonight. That is one thing each and every one of us should be doing daily. I just got tired of the daily grind of scheduled meds and 4 hrs of inhaled treatments. I must be doing pretty good. My oxygen level is now 97. It had been 90 for 10 yrs. It will drop to 86 and lower when I climb stairs or exercise.

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@suzie2017

My husband had his bronchoscope yesterday. The report shows terms that I am not familiar with. The doctor came out to talk to me but rattled on so fast and I was unable to compare what he said to the report. Here are some of the phrases in the report. Left lower lobe collapsed lung and pushing against the heart, abnormal left main stem bronchus (report goes on to say the same thing about right, left upper, left lower, right upper right middle and right lower lobes) including the subsequent. Washings were obtained in the entire tracheobronchial tree and return was cloudy. Doctor used the words “milky” and said it could represent a new infection. Area of chronically inflamed mucosa was found throughout the tracheobronchial tree. Mucous was copious, green, mucopurulent and thick, underlying mucosa is friable, extrinsic compression was found in the left lower lobe segment. No attempt to do TBBrushing of LLL segment due to friable bronchial mucosa (must mean blood). Does all of this point to end of stage COPD?

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@suzie2017 what kind of treatment did the doctor gave him to treat that collapsed lung ? Remember it push on his heart and make a pressure so he will feel tired for sure. It is very important to be treated for his lung infection as soon as possible. My pulmonary

doctor doesn’t let me without antibiotic when I had a lung infection and mine wasn’t a quarter of what your hubby has.  So make sure he is on a treatment if you want him to get better with that severe infections! Nick

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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It is absolutely wonderful that you are feeling as good as you are. If you feel real good, you don’t cough and your oxygen level is better, why would you choose to go back on your antibiotics? My husband takes about 16 prescription drugs plus his antibiotics that will run out in a few days. I often have wondered what would happen if he stopped taking them. However, we are not going to try to find out. Due to him spitting up bloody phlem, his heart doctor took him off plavix. I was surprised. Today his phlem has less blood in it. He told me today that he might look good and seem good but he does not feel good. He said his mind is all mush. I think that is the alzheimers. He does not express himself well so it is hard to find out what is causing him pain.

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@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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This little sister of TB is a strong bacteria that is hard to reach and hard to kill according to my niece who is in Epidemiologist and did her thesis on TB. We are finding out that we have to trick the bacteria in order to kill it. What no one can tell me is: why TB is so contagious and MAC is acquired, being from the same strain. And the plot continues….

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@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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@gaelawree welcome to this group!  I am Nick an I have bronchiectasis and had a MAC!  ( Lab test revealed no more MAC since last fall.  My infection doctor 4 years ago didn’t recommend the big 3 antibiotic because of the secondary affects. He said that it hasn’t

proven very effective so they only prescribe it on severe cases.  Apparently when you have bronchiectasis you are more subject to catch bacteria and other organism.  MAC  is found also in the earth and you do gardening so you should wear a mask.  If you have

problem breathing, you may ask your doctor to perform a bronchoscopy to clean your lung. It is also the most effective method to find out if you have a MAC. Sputum is not an accurate test according to my doctors.   I know it did an excellent job to have much

less problem breathing.  Also, I have used natural herbs to clear my lungs called CLEAR LUNG FROM RIDGECREST ( the bleu bottle) (i had to order it from the web because I couldn’t find it home)  when I was having problems breathing a bit.  I happen to know

reflexology so when I had a problem I was able to feel it and treat it. According to the infectiologue (french) mucous get worst if you have an acid stomach so I was treating my digestive system also.  You will find out on this chat site that we all have our

story of MAC.  Make sure you have had the right test done! I had no other disease so everyone is different! We will enjoy hearing from you and please feel at ease to ask all kind of question.  If you want to ask a question to someone specific at the beginning

of your message write @ and the name of the person you want to ask a question.  XxooxNick52

Liked by tdrell

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@suzie2017

My husband had his bronchoscope yesterday. The report shows terms that I am not familiar with. The doctor came out to talk to me but rattled on so fast and I was unable to compare what he said to the report. Here are some of the phrases in the report. Left lower lobe collapsed lung and pushing against the heart, abnormal left main stem bronchus (report goes on to say the same thing about right, left upper, left lower, right upper right middle and right lower lobes) including the subsequent. Washings were obtained in the entire tracheobronchial tree and return was cloudy. Doctor used the words “milky” and said it could represent a new infection. Area of chronically inflamed mucosa was found throughout the tracheobronchial tree. Mucous was copious, green, mucopurulent and thick, underlying mucosa is friable, extrinsic compression was found in the left lower lobe segment. No attempt to do TBBrushing of LLL segment due to friable bronchial mucosa (must mean blood). Does all of this point to end of stage COPD?

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The Pulmonologist put him on prednosone and also cefuroime axetil following his bronchoscopy on Tues. I asked if the collapsed lung could improve and he answered no. We will be seeing the ID Doctor on Thursday. His bloody phlem has improved.

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