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.

Katherine, Alumni Mentor | @katemn | Dec 9, 2016

Hi Kay, to be honest .. I am not exactly clear where/how the sputum comes from/is created .. I have never asked my doctor the source .. I just deal with it. I know that I also have Bronchiectasis which is very common with MAC .. in fact Dr. Aksamit said they really don't know which comes first .. chicken/egg thing. Very common to have BOTH Bronchiectasis AND MAC .. PLUS common to have GERDS AND post nasal drip .. ahh the beauty of this disease!

So due to these cute little details I take Aciphex for the Gerds daily .. Dr. Aksamit prescribed a VERY helpful nasal spray that I get from the Mayo Pharmacy (they will even mail it to you for refills) .. and for the MAC and Bronchiectasis .. I just do my daily "lung hygiene" . Hope this helps. Our disease journey can be so different because our bodies are so different .. our disease at such different points .. so many variables! Katherine

REPLY
3 replies
Kay Strand | @kaystrand | Dec 9, 2016
In reply to @katemn "Hi Kay, to be honest .. I am not exactly clear where/how the sputum comes from/is..." + (show)
@katemn

Hi Kay, to be honest .. I am not exactly clear where/how the sputum comes from/is created .. I have never asked my doctor the source .. I just deal with it. I know that I also have Bronchiectasis which is very common with MAC .. in fact Dr. Aksamit said they really don't know which comes first .. chicken/egg thing. Very common to have BOTH Bronchiectasis AND MAC .. PLUS common to have GERDS AND post nasal drip .. ahh the beauty of this disease!

So due to these cute little details I take Aciphex for the Gerds daily .. Dr. Aksamit prescribed a VERY helpful nasal spray that I get from the Mayo Pharmacy (they will even mail it to you for refills) .. and for the MAC and Bronchiectasis .. I just do my daily "lung hygiene" . Hope this helps. Our disease journey can be so different because our bodies are so different .. our disease at such different points .. so many variables! Katherine

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Hi Katherine
Thanks so much. I got the same nasal spray from Mayo, and it really is great stuff.

I have a very small area of Bronchiectasis they told me. Maybe that's why I have nothing to clear from my lungs. It of course makes me wonder how I got MAC since I don't even take showers, only baths. I guess it doesn't matter.

I will help Heather and the group by doing some advocacy letters soon. I'm back to work now, so have been too busy with that and Holiday prep.

Our Forum is great source of info and encouragement. Thanks for all you do to help people out.

It's a strange disease. I feel like I only started being sick When I started the meds for MAC (big 3). I felt well till I started them on August 1. I've been tired and nauseated since that time. My MAC was found when a nodule was spotted when I had pneumonia, a CT Scan showed a cavity in my upper right lung. One spot! A biopsy done by a bronchoscopy showed MAC.

I think too, that a part of the pflegm and post nasal drip is stress related. The busier and more occupied I am, the less I have problems with it. Do you find stress makes it worse? If so, we all should relax 😉

Again, thanks to all of you and best of the Holidays.

Kay

REPLY
Katherine, Alumni Mentor | @katemn | Dec 9, 2016
In reply to @katemn "Hi Kay, to be honest .. I am not exactly clear where/how the sputum comes from/is..." + (show)
@katemn

Hi Kay, to be honest .. I am not exactly clear where/how the sputum comes from/is created .. I have never asked my doctor the source .. I just deal with it. I know that I also have Bronchiectasis which is very common with MAC .. in fact Dr. Aksamit said they really don't know which comes first .. chicken/egg thing. Very common to have BOTH Bronchiectasis AND MAC .. PLUS common to have GERDS AND post nasal drip .. ahh the beauty of this disease!

So due to these cute little details I take Aciphex for the Gerds daily .. Dr. Aksamit prescribed a VERY helpful nasal spray that I get from the Mayo Pharmacy (they will even mail it to you for refills) .. and for the MAC and Bronchiectasis .. I just do my daily "lung hygiene" . Hope this helps. Our disease journey can be so different because our bodies are so different .. our disease at such different points .. so many variables! Katherine

Jump to this post

Hi Kay, I REALLY do try to focus on serenity. There is such a mind/body connection that I don't even think science or we have caught up with yet. Plus for me in my life "denial" really works for me .. I really don't deal with either my or my husband's issues unless they are staring me in the face. I REALLY focus on living my life as happily and healthily as I possibly can .. putting my "energy into what I can control .. and letting go of what I can't control." We all hit hard spots in our lives .. I hit one a few weeks ago .. had to "pull up my big girl panties" .. and plow through it. For me part of it is this Forum .. trying to "play it forward" .. amazing how helping other people truly helps us ourselves!

Yes, it is a strange disease. With the nausea .. have you tried different timing/rotation of the meds? That helped me .. figuring that out .. with/without food .. even just a little snack helped. I also found I just plain had to listen to my body .. found I absolutely needed about 10 hours of sleep. Found I HAD to go to bed earlier .. respect the signals my body was sending me .. just HAD to take care of that one body I was given for this lifetime.

When you go for your next appointment .. REALLY ask about the Bronchiectasis. I did NOT .. I was so focused on the MAC .. I didn't even actually think about or realize the ramifications of the Bronchiectasis. Now I think I am actually suffering quite a bit from the "scarring of the bronchial tubes" .. AND that scarring is NOT going to go away. It was not until about a year ago that I even googled the issue and began to really understand the lifetime ramifications of Bronchiectasis. AND Dr. Aksamit says mine is NOT even very bad! Hmmm.. how on earth do people with a severe case handle the coughing?! Oh well .. attitude of gratitude! Happy Holidays to you also! Hugs! Katherine

REPLY
Kay Strand | @kaystrand | Dec 9, 2016
In reply to @katemn "Hi Kay, to be honest .. I am not exactly clear where/how the sputum comes from/is..." + (show)
@katemn

Hi Kay, to be honest .. I am not exactly clear where/how the sputum comes from/is created .. I have never asked my doctor the source .. I just deal with it. I know that I also have Bronchiectasis which is very common with MAC .. in fact Dr. Aksamit said they really don't know which comes first .. chicken/egg thing. Very common to have BOTH Bronchiectasis AND MAC .. PLUS common to have GERDS AND post nasal drip .. ahh the beauty of this disease!

So due to these cute little details I take Aciphex for the Gerds daily .. Dr. Aksamit prescribed a VERY helpful nasal spray that I get from the Mayo Pharmacy (they will even mail it to you for refills) .. and for the MAC and Bronchiectasis .. I just do my daily "lung hygiene" . Hope this helps. Our disease journey can be so different because our bodies are so different .. our disease at such different points .. so many variables! Katherine

Jump to this post

Katherine
Actually YOU are the reason I'm doing better with the meds. When I first started them I was flat in bed I was so sick and had terrible insomnia.. You welcomed me to the forum and suggested I change times around on my meds. I talked to Mayo and we changed my Rifampin time, and I was able to sleep and felt better. I've tried a lot of variations on time and taking E and Z with food, but the nausea persists, better some days than others. My doc says no food w R as it decreases absorption.

I have asked about Bronchiecstasis to the 2 pulmonary docs I've seen. They say a very small amount in one lobe. I don't think that causes post nasal drip though which is my main bother except for drug side effects!

Again, thanks, hugs back. Have a great Holiday.
Kay

REPLY
maryjo2sell | @maryjo2sell | Dec 10, 2016

Hello. My name is Mary Jo. I am new to the forum. I only discovered you while looking for treatment at Mayo in Florida. I did not have MAC, I had its relative called Kansasaii. It is in the same TB family, inhaled water droplets. Where did it come from? Who knows. This was in 1996. I used the same "cocktail" as many in this forum. I recovered and felt very well...until 2009. I learned I had bronchiectasis. The doctor I went to at Duke (after many failed diagnose every where else) told me it was caused by the Kansasaii. Bronchiectasis is widened lung airways with areas that collect mucus and bacteria instead of getting rid of it. That is why you clear and cough up mucus. I take antibiotics 2weeks of every month, switching ABX each time. I use a Aerobika daily and cough up as much "stuff" as I can. Just because you have Mac does not mean you have bronchiectasis. It took years for mine to develope. I did not know that the Mac never really went away, because my doctors said my Kansasaii is gone. I do have problems with staph in the lungs. I realize this group is for Mac, but need to find a good pulmonary doctor in Florida. In 2017 my doctor at Duke cannot take out of state insurance.
My aunt has Mac so I will hook her up with forum. She definitely has trouble with the meds. Wishing you all a lovely holiday season! And stay well!

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10 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 10, 2016
In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts... Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Hi Cathy! I was diagnosed with MAC in 2005. Pretty sure I caught it in a hottub. Mayo treats it with alternating month antibiotics. 28 days on tobramycin, then, 10 days twice daily cipro 500 mg twice a day. this seems to keep the infection at bay.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 10, 2016
In reply to @Paula_MAC2007 "I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that..." + (show)
@Paula_MAC2007

I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that got progressively worse). For 4 yrs, 3 months (Feb 2008 - April 2012), I was on the 3 standard drugs for MAC . I had some side effects from the drugs but gradually they went away or I learned how to deal with them. If my routine got out of whack (like on vacation) I suffered.

Over the years, I grew to feel like my old self - although as a high energy person, I was somewhat sluggish from the medication. Last April, I negotiated with my pulmonologist to go off the drugs. What a relief! Was like a weight had been lifted . . . I felt much lighter and less sluggish. While my MAC was not gone, my lesions had shrunk over the years of antibiotics. I considered the MAC as hibernating or resting!

Eight months later (December 2012) I began experiencing the cough (which at times results in spasms) and tiredness. Since Feb, I have been on two different antibiotics from my Internist - to rule out a severe sinus infection. No dice! Yesterday (March 2013) I saw my pulmonologist who, before assuming it is MAC and resuming the meds, wants to do a lung lavage and CT scan. Will do this within the next two weeks.

Incidentally, my Internist did a lot of blood workup recently and my Vitamin D is very low. Am now taking 50,000 IU for 12 weeks and then repeat the tests. My pulmonologist yesterday mentioned there is some connection between Vitamin D and lung issues but it's not real concrete yet.

So my MAC appears to no longer be 'resting'.

I will follow this blog with great interest. I live in Wisconsin, in the part of the upper Midwest where MAC is found. Yet MAC is not found in some other Great Lake states. Sure is a mystery.

I WOULD LOVE TO GET IN A STUDY WITH OTHERS WITH MAC!!!!!

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Hi Paula, are you a Mayo Clinic patient? And was that lavage treatment a 'whole lung lavage' where they actually run liters of saline through your lungs?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 10, 2016
In reply to @blc "I found this discussion while researching side effects for the meds prescribed for MAC, and possible..." + (show)
@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can't imagine taking these meds for the next year or more!! I'm sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I'm a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

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Hi Deby! Where did you get treatment?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 10, 2016
In reply to @melissa23 "Hello my comrades with MAC. I am Active Duty military and frustrated with my limited access..." + (show)
@melissa23

Hello my comrades with MAC. I am Active Duty military and frustrated with my limited access to answers about my infection.

I had a >21mm PPD in 2011 along with gross reading CT Scans and misread chest x-rays. For three months in 2011 I was treated for Latent Tuberculosis then released from treatment after I demanded a QuantiFERON TB test which came back negative for TB.

In 2014, my body finally deteriorated to the point that my neurologist addressed my persistent cough and ordered an AFB sputum culture – Positive for Mycobacterium avium. My doctors act as if they have never seen the manifestation of this infection. My CT Scans have revealed “reticulondular, interstitial, pleuroparenchymal opacities in both lung apices” and x-rays range in readings from “mild, bilateral nodular changes in the lung apices” and “biapical pleural thickening”, to “the lungs are normal in appearance without evidence of active disease”. It seems that “normal” was much easier to deal with than the potential of missing the infection back in 2011.

I am currently on 2 antibiotics (azitrthromycin 500mg 3xs a week and rifampin 600mg 3xs a week) and have been since FEB 2015, yet sputum cultures continue to come back Postive.

Has anybody out there had AFB cultures to determine if the MAC is in their Blood & Urine?

Had anybody out there had their M. avium subspecies identified?

To aggravate matters more, I am told that the MAC is not in my lungs. My doctors are thinking of discontinuing the “toxic” antibiotic treatment. Over the past three years I have developed SVT, Raynaud’s disease, migraines, levido reticularis, vulvudynia, unspecified diffuse connective tissue disease and now I have left-side-facial muscle pain/droop and similar pain/swelling/immobility in my right hand.

I have asked the Military to Please send me to see Dr. Timothy Aksamit at the Mayo Clinic.

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Hi Melissa. I believe your treatment was supposed to include a third anti-biotic along with the other two. I think it is called rifanpin or something like that that. Raynaud's is an auto-immune disease and as such leaves one suseptable to weird infections. Def get to the Mayo.

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Katherine, Alumni Mentor | @katemn | Dec 10, 2016

@windwalker , I hope you don't mind if I put this answer on our Forum as then it helps everyone!

The nasal spray I get from Mayo is what is called a "compound prescription" meaning the pharmacist actually prepares it themselves. If you doctor prescribes it .. you have to ask a pharmacy: "Are you a compound pharmacy? Do you know of one and what is their phone number?" Then you can have the prescription transferred to that compound pharmacy from where your doctor faxed the prescription.

The nasal spray must be kept refrigerated and is:
Mometasone 0.033%, Ipratropium 0.02%, Diphenhydramine 0.033% Kit

Problem .. when I tried to get my prescription refilled at a local pharmacy they declined .. said they did not have the "kit" which is essentially the bottle and nasal spray portion .. not the ingredients. So this may be the issue you run into. Best to you! Katherine

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