(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

@suzie2017

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

Jump to this post

@suzie 2017 it is sad hat he has all these symptoms. Has he tried alternative med for his fatigue?  According to my doctor for MAC treatment . MAC is a microscopic organism who many people has and never get bothered with it but for some people it can multiply

(colonized) and create a lot of mucus (sputum) that would give you problem breathing. He never said it could affect the groin pain . Did you check the internet for the cause of groin pain? 

When your lung can’t do its job properly then the heart can start working harder.  I wonder if he had stomach aches?  Does he has lots of sputum? Does he have a good appetite? 

God will guide you to the solution! Keep believing the answer will come.  Have you ask your doctor about the groin pain! Sometimes we are our best doctor. Your husband will be in my prayer! Keep believing and searching you will find.  Ginko biloba is good

for fatigue and the immune system. I use the vials! Nick

REPLY
@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…

Jump to this post

@suzie2017 my doctor said that sputum is not accurate for a diagnostic. You may want to double check that.  We live in Largo Fl.  Is this far from you? Nick!

REPLY
@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…

Jump to this post

@sophie 1019 you bought clear lung the blue or the red bottle?  What is it you want to take it for?  I use ClearLung! Nick

REPLY
@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…

Jump to this post

We have not heard from our doctor as of yet. If I don’t hear from him by Monday, I will call and set up an appointment. I read on line that blood and urine tests will also be ordered. We live in Sebring, FL

REPLY
@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?

Jump to this post

Sorry to interrupt… this is new information about swimming in outdoor pools as well. Eighty percent is harbouring Mac…it makes sense but is this some new information. I remember when it was just indoor pools. I am now on the big 3 so I will avoid pools. Can u tell me where you got this information..

REPLY
@suzie2017

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

Jump to this post

To all  I have a question? What was your symptoms when the doctor told you you have a MAC in your lung?  

Is anyone tried Dr Ohirrah’s probiotics?

Nick

REPLY
@suzie2017

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

Jump to this post

@jengelage did you received my response regarding your question about alternative Med.?

REPLY
@tdrell

Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia….but eventually found out the pain was due to osteoarthritis in the left hip.tdrell

Jump to this post

The hip is a possibility but my husband does not have any pain when he walks. The groin pain comes and goes as well as back pain in the middle of his back. I wonder if it could be the Mac infection spreading. He had his groin x-rayed and nothing showed up about 3 months ago. We hope to see his doctor his week.

REPLY
@suzie2017

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

Jump to this post

My husband had extreme night sweats, low-grade fever, and extreme fatigue. He had it for months before his sputum came back positive for MAC. Previous physicians didn't do any follow-up tests, though he had the same complaints. Once the sputum came back positive, they finally diagnosed it.

REPLY
@suzie2017

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

Jump to this post

Is your husband now on the antibiotic treatment? If so, I hope he is doing better. My husband has only few of the symptoms of Mac, he has weight loss of 18 pounds over the past 2 years and he struggles with fatigue. He has never had night sweats. Did the physicians do any other tests on your husband? We hope to see the doctor this week.

REPLY
@suzie2017

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

Jump to this post

He was prescribed the big 3, but found he generally couldn't take them. He had CT tests which showed mild bronchiectasis in both lobes. We are actually traveling to Mayo Clinic in Rochester tomorrow to see Dr. Aksamit on Tuesday. I hope they will be able to come up with alternative therapies.

REPLY
@suzie2017

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

Jump to this post

I will be very interested to hear what alternatives they recommend. Could you please keep me informed. Thank you.

REPLY
@suzie2017

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

Jump to this post

Yes, I will do that.

REPLY
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

Jump to this post

Hello Kate, Thank you so much for this post! I was recently diagnosed with MAC. I am a retired CCRN. I have no symptoms other than fatique which I attributed to lack of sleep and supplemented my tiredness with afternoon naps. I started Azithromycin 500 mg on 4/2/18, added Ributin 300 mg on 4/9/18. I was having nausea almost immediately after the Ributin but I was managing it. That is until I added the Moxifloxocin 400 mg on 4/15/18. It felt like someone poured poison into my body. My GI system was on fire, I had nausea, vomiting, diarrhea, dizziness, headache, agitation and shaking. I lost 9 pounds in 4 days. After 4 days I ended up in the ER where I received IV hydration, IV Zofran and a prescription for Carafate and Prototonix. That was 2 days ago. I am still nauseated. I feel like I am still in the stage of denial and at this point I feel that the cure is worse than the disease. I stopped all three meds. My doctor simply said that if I can't take all three than she'll have to refer me for IV infusion therapy through a PICC line. I am upset and very unhappy. The more I read about this disease the more I am doubtful about it. It all started on December 1st. 2017 with pneumonia. I live in Souther California. Any input from you would be greatly appreciated.

REPLY
@suzie2017

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

Jump to this post

@joan912, Hello Joan. I am glad that your husband is seeing a doctor at the Mayo. Since ypur husnand doesn't tolerate the Big 3 very well, ask Dr. Aksamit if he could speak with my doctor at the Mayo in Jacksonville and perhaps discuss an alternaive way to treat your husband. I am treated at the Mayo in Florida by Dr. Leventhal. He believes the Big 3 are ovet prescribed. He put me on an alternating drug tjetapy where I tale one antibiotic a month for ten days. I test negative now, but continue the treatment as a prophylaxis to keep me from getting it again. I also have taken all of the other precautions to keep from getting re-infected. I hope you will keep us posted as to what Dr. Aksamit says. I wish your hubby the best outcome.

REPLY
Please login or register to post a reply.