(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

@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

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Hi @lindam272
Here's the link to Katherine's "Questions to Ask" message for your file cabinet.
https://connect.mayoclinic.org/discussion/update-on-treatment-of-mac/?pg=3#comment-63228
I'll also paste her Questions to Ask here:

From KATEMN
From my File Cabinet:
QUESTIONS TO ASK OF DOCTOR
This is the question form I use when I see my MAC/Bronchiectasis doctor. This is merely the form I put together for myself .. cut/pasted from numerous sources .. use it .. redesign it for your own needs or whatever. You could easily copy/paste/ADD SPACES FOR NOTES/redesign it for your own use. Hope it helps someone! Hugs! Katherine
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Questions to Ask Your Doctor-LUNGS-MAI- Bronchiectasis
DOCTORS’ NAME: PHONE #: FAX #:
_______________________________________________________________________________________________________
Questions To Ask Your Doctor
DOCTOR: _________________________________SPECIALTY______________________ DATE_______________
1. Where is the MAI/Bronchiectasis located currently? Are there new areas or new changes? At what stage would you say it is on a scale of 1 to 10? How does it compare to my last appointment for each.
2. Are the drugs I am taking currently effective for the two mycobacterium/Bronchiectasis?
a. Are the dosing level for each medication effective or do they need to be adjusted? b. What period of time before one of the medications can be adjusted or eliminated?
3. Based on the current progress how long would you project that I would me to be on the medications?
4. What monitoring will I continue to need? When will I need my next: a. Follow up appointments with you? b. X-rays/ CT scans
c. Monthly Lab work
d. Hearing testing
e. Vision testing
f. Monthly salt induced Sputum Cultures (Hypertonic Saline Induced Sputum Culture)
5. How long would you anticipate the side effects of night sweats/sleep disturbance/fatigue/oral thrush/dry mouth/geographic tongue to continue? a. Do you have any suggestions for coping with the less serious side effects?
6. Do you agree with the current Medication Schedule I am following?
7. Do you suggest any other lung clearance devices? How often/when?
8. What cleaning methods do you suggest for lung clearance devices? Method/How Often?
9. When/how do I still take my stated Prescriptions/ over the counter medicines /vitamins / supplements?
IF SUGGESTED NEW Medication:
1. a. Spelling of new drug I will be taking b. dosing level of each new medication c. what period of time before the next medication d. how long do you expect me to be on the medications e. any new monitoring will I need f. any side effects will I likely to have g. which side effect should be reported immediately h. when/how do I take each of these medications/ what schedule should I follow g. Will I also need new inhalers? h. SALINE NEBULIZED TREATMENTS with Aerobika?

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

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Thank you very much. You provided me with some excellent information and good questions for the doctor. It will probably be 2 weeks before we get the 2nd culture results back. I am glad to hear that you are doing better and gaining your weight back. I will get back to you.

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

Liked by Marr j

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@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

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@colleenyoung -You rock, Colleen! Thank you! Linda

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

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@colleenyoung – Cracks me up that this was page 24. Katherine would be so pleased to see the activity on this forum! Linda

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@suzie2017

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

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I'm not sure. I was treated with the big 3 for two years. Then last year in october, I was on an iv drip until about two weeks ago
The I'd doc took me off because even though I was on med for 2 years, I still have a small cavity of mac. I feel real good, didn't know I had this stupid disease, went thru treatment okay. I lost weight and my stomach hurt on the beginning, but as I got use to meds, the stomachache went away. The doc took blood every week to make sure meds weren't messing with liver or anything else. So are you seeing an I'd doc???

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@suzie2017

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

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@ Sophie i wonder if you are taking all this med for the MAC problem.  My doctors says a lot of people live with this small organism and are not sick. If you are not sick because of it why would the dr give you all that med.  unless I misunderstood what you

said.  I had the MAC and never took medication because it wasn’t affecting me that much. Now I do not have it!  I am very careful with all medication because they can make you sicker. 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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@suzie2017 be careful with medication it can make you sicker.  I had the MAC (it is a small microscopic organism that can colonize or multiply.  My infectiologue told me that some people can live with it all there lives without being affected some have breathing

problem if it multiply.  He didn’t give me any medication because I didn’t have much symptoms.  They give med when it is as a last ressource. Be careful. Mayo Clinic seem to treat everyone with the big 3 not my infectiologist. I had the MAC now I don’t. As

he said it can go away.  I have used alternative medicine when I had synptoms. Nick

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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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@suzie2017

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

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I am taking the Meds because they tell me and show me changes. I really hope they work. I feel bad at times when I hear about the relapses. I want to get rid of it and am really trying to follow the directions from Pulmonary. It is nice to hear about success stories too.

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@suzie2017

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

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What kind of alternative medicine did you use when you had symptoms. Are there alt meds that are effective??

Liked by Marr j

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@suzie2017

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

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Hi Nick. Thanks for the positive post. I do not take the big three or other prescription drugs. Alt meds only. Could you please post your successful alt meds. Thanks so very much. Charlie

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@suzie2017

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

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You have a good attitude. I sure hope they work for you.

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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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D0 you have COPD?

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@suzie2017

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

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Nick, I am glad that your Mac went away. My husband has symptoms such as fatigue and weight loss but he has had those symptoms for about 2 years and Mac was just discovered last month.

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