(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

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

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Yes against women. Since most people that have it are women. I think if more men would have it, they might work harder at finding treatment. Somehow I feel like we aren't getting a fair amount of attention. I keep saying when someone famous get it, then attention will be paid to it.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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My husband takes Musinex to loosen the phlem and he uses an aierbecca twice a day plus his nebulizer. We have never been told why he has fluid in his lungs. I am guessing it is because of congested heart failure or complications of COPD. I have asked what causes it but I was never given a good answer.

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@joan912

My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big 3, but later told him not to take any, if he won’t take all 3. He had a bad reaction to Rifabutin, which caused chest pains. He asked if there was a substitute for that, but apparently not.

He had 2 CT Scans, one in March, the second in May. The second did show some improvement, but also diagnosed bronchiectasis, which the first Scan did not. He asked for another one this month. Now his doctor told him that he doesn’t need another CT Scan at all, and, if anything, he could have a Chest X-ray. A chest X-ray cannot diagnose bronchiectasis so, to me, her response is outrageous. His doctor seems to be very ineffective and doesn’t seem to care about his well-being. She never asks how he is, nor offer any solutions to his constant sputum. I’m afraid to ask for another pulmonologist at Kaiser, because I’m afraid they will back each other up, or at least not contradict each other.

Does anyone have experience with Kaiser? My husband wants to see numerous other pulmonologists in other cities and wants me to take time off from work (let alone spending a lot of money since it will all be out of pocket), to make appointments for him (he doesn’t work). I simply cannot do so, since I have no backup for my job. I’m willing to travel to one place, maybe Mayo Clinic in Rochester, MN.

If I can stay local, does anyone have a recommendation for a well-respected, knowledgeable MAC doctor in the Bay Area of California?

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Thank you..read the posts.  Still not clear on outdoor pools, oceans, lakes etc… I remembered my conversations…it seems that outdoor pools aren't great as well…probably not as bad as indoor…salt water???

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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@nick52 and @suzie2017 Hello girls. According to the specialist that spoke at the 2016 NTM Conference in D.C. they said that the Gold Standard for Sputem testing for MAC; is to get a morning sample for three consecutive days. Private practice doctors do not do this, and my doctor at the Mayo clinic does not do this. The only ones that do it that I know of, is NJH (National Jewish Health). The reason they like to do three day sputem samples is to verify that the mac has definitely colonized. I guess the bacterial load can fluctuate daily unless it has a good foothold in the lung. That may be the reason some doctors like to take the 'wait and see' approach. Many doctors feel that a bronchoscopy is very invasive and not neccessary to get the sample. There are exclusions I would imagine.

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@suzie2017

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

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@128128terry11t , How To Prevent Re-Infection
Causes in the home can be curtailed to some extent. Turn your hot water heater temperature up to 130 degrees (use caution with children in the house as this is a scalding temperature).Take a bath instead of a shower. The splashes and steam from the shower get inhaled. Remember your hot water tank and the shower head are the biggest offenders for harboring mac and/or other dangerous mycobacteriums. Your shower head should be soaked in vinegar every 6 months or less. It can be removed (ideally) and soaked, or a baggie with vinegar in it wire-tied over the shower head while still in place. It should be left soaking for at least thirty minutes.
Change water filters every two months or boil your drinking water. Do not use ice cubes that your freezer makes or drink the water from the door. That water sits in a bladder inside your refrigerator next to warming elements and breeds mac.
Avoid swimming pools, steam rooms, and hot tubs, and facials using steam. (I know, I just sucked all of the joy out of your life – I‘m sorry.) Avoid unnecessary visits to people in the hospital or nursing homes. These two places tend to harbor some of the very bad infectious bacterias like: m. abscessus, serratia marcescens, and most notoriously klebsiella pneumonia. These last three are particularly bad because they are hard to treat and are famous for being antibiotic resistant. There are new drugs on the horizon that seem to be promising for combating these, but have not been released by the FDA yet.

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@suzie2017

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

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@jkiemen Good question Jo Ann! Many people get caught up on the physical aspect of having mac and it's treatment. There is always the psychological side as well when dealing with a chronic illness. For me, when I was in the throes of active infection and feeling cruddy every single day; you can't help but constantly think about it. When my treatment plan started to work, I fixated less on it. You DO better, when you FEEL better. I also did a lot of visualization. I told myself daily that I am NOT sick, that is not who I am, I would repeat "I am normal" all of the time. I tell my body that this is unacceptable (to be sick) and that I am not having it! This is much easier to do when you are feeling better verses feeling miserable and hacking up your lungs all day .Jo Ann, I have adopted healthier lifestyle changes that have become second nature to me now; therefore, I don't need to be thinking of the disease so much. Let me know if you decide to try the visualization idea.

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@cmcclure

hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself… It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and any one that can point me in the right direction it will be sincerely appreciated.

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@nick52, many mycobacterium researchers disagree with your infectiologist. Many showerheads harbor mac inside of them. That can be harmless to most people, if you have bronchiectasis or a poor immune system; then you are susceptible to it colonizing your lungs if you breathe in the steam.

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@suzie2017

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

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@windwalker Thank you. Nice summary. IF anyone has anything to add, it all is appreciated. Anybody out there have the filters for the shower??

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@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

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@nick52, I have tree-in-bud and two small nodules.

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@auntnanny

I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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My husband first got pseudomonous in July, 2017 and it was discovered through a sputum test. He was put on Cippro for several months but it never really cleared up. It is my understanding that the infection never really goes away. It apparently will flare up and then when you begin to recover it lingers in the background until the next flare up. My husband has 3 different infections and right now they are all well behaved until his next flare up. Patients are susceptible to pneumonia with pseudonymous or any other lung infection. I also think every person is different with lung infections. Symptoms for one person may be different than someone else and what works for one person (antibiotic) may not work for someone else. I hope you soon feel bettter.

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@auntnanny

I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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I took my husband to his primary yesterday so that she could refer us to an infectious disease doctor. She talked a little bit about MAC and indicated that it is very possible that the ID doctor will not put my husband on a treatment plan. Without her saying, I think it is because he is in a weak state, he continues to have anemia, and he is already on 16 prescription drugs with his multiple illnesses. She indicated that in many cases the side effects from the drugs are much worse than the disease itself. The ID doctor is out of the office until Monday due to a family emergency. My husband continues to feel pretty well with the exception of fatigue, dizziness and off and on pain that moves through this body. He does not have rheumatoid arthritis but he is plagued with arthritis and he needs two shoulder replacements so that alone causes pain. No one really knows why he has groin pain usually in the evenings and then it goes away when he gets in bed. He was x-rayed and everything seemed to be OK. Even with his alzheimers and illnesses, he is always very pleasant and easy going. Hope you are doing well.

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@joan912

My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big 3, but later told him not to take any, if he won’t take all 3. He had a bad reaction to Rifabutin, which caused chest pains. He asked if there was a substitute for that, but apparently not.

He had 2 CT Scans, one in March, the second in May. The second did show some improvement, but also diagnosed bronchiectasis, which the first Scan did not. He asked for another one this month. Now his doctor told him that he doesn’t need another CT Scan at all, and, if anything, he could have a Chest X-ray. A chest X-ray cannot diagnose bronchiectasis so, to me, her response is outrageous. His doctor seems to be very ineffective and doesn’t seem to care about his well-being. She never asks how he is, nor offer any solutions to his constant sputum. I’m afraid to ask for another pulmonologist at Kaiser, because I’m afraid they will back each other up, or at least not contradict each other.

Does anyone have experience with Kaiser? My husband wants to see numerous other pulmonologists in other cities and wants me to take time off from work (let alone spending a lot of money since it will all be out of pocket), to make appointments for him (he doesn’t work). I simply cannot do so, since I have no backup for my job. I’m willing to travel to one place, maybe Mayo Clinic in Rochester, MN.

If I can stay local, does anyone have a recommendation for a well-respected, knowledgeable MAC doctor in the Bay Area of California?

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Thanks Colleen✌️

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