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(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.

Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 30, 2017
In reply to @jentaylor "Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2..." + (show)
Profile picture for jentaylor @jentaylor

Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2 months. I was seen at Mayo in Minnesota over a 2 week period. I received so much info from all of the evaluation. I have been overwhelmed & scared & I have been trying to process all of this on my own. It hasn't been going to great so I'm trying to reach out & thought what a better group to talk to than others who are going through similar life experiences. After have a positive MAC culture from my bronchial washings, I was told that I had MAC & need to be treated. Previously (Sept. 2016) they diagnosed me with bronchiectasis. Nothing was seen on my CT scan or X-ray that showed the colonies seen from MAC. One of the big reasons I was going to Mayo was to get an expert opinion from Dr. Askamit. After Dr. Askamit read through my many, many, many records over a course of 10 years, since I first got sick, he concluded that at this time I may have MAC but it should not be treated at this time because it does not appear on a CAT scan. I must tell you that I was shocked by his response as it was completely different than my pulmonologist locally. And to be honest, I seem to have met the criteria to be considered to have MAC & to start treatment. I have many underlying illnesses & it's so hard to sort out what is what. Dr. Aksamit said to wait until it is seen on a CT scan. I have very mixed feelings about this. I am concerned that I should just wait until I become more infected to start treatment. Personally, I'd rather treat it BEFORE it gets worse. I guess I'm the only one who things that. My local pulmonologist changed his mind & decided not to start treatment at this time. Don't get me wrong, I do NOT want take all of these meds that can cause such grief & danger!!! I also don't want to just sit around & wait for things to get worse!!! Am I wrong in thinking that?? I value your opinion. Oh, and I have had the bronchiectasis diagnosis since Sept 2007 based on CT scan but now, when Dr. Askamit looked at a different CT scan, he said he didn't see that. I'm SO confused. I know one thing to be true...I'm in a mess of a health situation with multi system dysfunctional & disease. I am sick every day of my life for 10 years now & without an underlying diaganosis of what disease I have in the lungs. They said I would not make past 2 years but here I am, 10 years later, alive & trying my absolute best to lead as much of a normal life as possible...mostly for my family. I'm back to a point where I am requiring supplemental oxygen again. I had been able to breath on my own for the past 3 years. What changed? We don't know. I go into respiratory failure several times a year resulting in hospitalizations. We still can't answer the question of why my lungs don't convert oxygen from the air I breath in??? Anyway, I apologize for rambling on. I have been so withdrawn & sad, scared & lonely since receiving all of this new information. I also learned I have stage 1 heart failure & other metabolic syndrome that leaves me as the "perfect storm for a cardiac event" as the physician stated it. I ended up at Johns Hopkins a couple weeks ago with an excellent cardiologist who is trying to help my sort things out. My weight is a contributing factor to my alveolib hypoventilation &
We discussed having the stomach sleeve procedure to help me loose weight. There is so much on my mind & I apologize that I just rambeled on without even diving the long note into paragraphs!!! That's just how my mind has been lately. I am in NO way trying to ask for self-pity...I'm just trying to get through my reality of day to day life the best that I can & with the most quality that I can. I'm just so confused right now. Oh, I had another bronch done on Wed. & we sent the washings for culture & this will probably be the ultimate testing to see if the washing show positive for MAC. We won't know for 6 weeks! Again, I welcome your feedback... thanks for taking the time to read this!

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Yay!!! for you Heather! So glad!
 

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Terri Martin, Volunteer Mentor | @windwalker | May 30, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
Profile picture for lindam272 @lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

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Hi Dale, that was me. Fill a baggie with straight vinegar and take a twist
tie and tie it off at the neck of the shower head. Leave on overnight. That
should kill the MAC residing inside.
 
 
 

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Terri Martin, Volunteer Mentor | @windwalker | May 30, 2017
In reply to @tay4rake "Amakasin worked for me. I was diagnosed with pseudomonas in early 2016. The first time they..." + (show)
Profile picture for tay4rake @tay4rake

Amakasin worked for me. I was diagnosed with pseudomonas in early 2016. The first time they gave me a 14 day Rx of ciprpfloxin. I I started feeling better in a few days, but within 2 weeks of finishing the Rx the symptoms started coming back. Amakasin is very expensive. I had very good insurance at the time, but I still had over a $1000 co-pay. I had to inhale it via my nebulizer 2x a day, for 30 days. IT WORKED and worth every dollar. Pseudomonas is commonly diagnosed with people with bronchestisis and difficult to eradicate. Good luck. Best, Elaine

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Nebulized Tobramycin is also great for that. Expensive also, but insurance
paid 80% and a scholarship picked up the rest.
 

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Terri Martin, Volunteer Mentor | @windwalker | May 30, 2017
In reply to @cila "Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need..." + (show)
Profile picture for cila @cila

Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need to take it but did not explain much about it. He just says its inhaler and they have to get approval from my insurance and then order it. I really don't know what to expect. Thanks for the info. I hope your felling much better now. Blessing to you Cila.

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Katherine, you are supposed to be on sabbatical! I am sorry your husband is
in the hospital again. Are you getting any support there?
 

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debymacc | @debymacc | May 30, 2017
In reply to @melissa23 "Hi DebyMacc. Have you been tested for MAC since your recovery?" + (show)
Profile picture for Melissa23 @melissa23

Hi DebyMacc. Have you been tested for MAC since your recovery?

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I have not been tested since 2009 ...and no symptoms have reoccurred.

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1 reply
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Katherine, Alumni Mentor | @katemn | May 30, 2017
In reply to @cila "Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need..." + (show)
Profile picture for cila @cila

Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need to take it but did not explain much about it. He just says its inhaler and they have to get approval from my insurance and then order it. I really don't know what to expect. Thanks for the info. I hope your felling much better now. Blessing to you Cila.

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@windwalker,Terri, taking him home tomorrow .. not nearly as sick as he was in February .. a blessing! Hugs to all! Katherine

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tdrell | @tdrell | May 30, 2017
In reply to @cila "Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need..." + (show)
Profile picture for cila @cila

Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need to take it but did not explain much about it. He just says its inhaler and they have to get approval from my insurance and then order it. I really don't know what to expect. Thanks for the info. I hope your felling much better now. Blessing to you Cila.

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Katemn....we are all thinking of you and hubby and sending our love tdrell

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jentaylor | @jentaylor | May 31, 2017
In reply to @cila "Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need..." + (show)
Profile picture for cila @cila

Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need to take it but did not explain much about it. He just says its inhaler and they have to get approval from my insurance and then order it. I really don't know what to expect. Thanks for the info. I hope your felling much better now. Blessing to you Cila.

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Oh dear @katemn...I didn't know that you are fighting off a bug!!! I'm so sorry to hear that! I always visualize myself boxing with the "bug" (bacteria) & visualize myself winning...I think it helps...somehow...silly I suppose but you need to use all the tools you have got to fight & win these battles! AND as they say, when it rains it pours...YOU have so much going on AND in addition, you have a loved one who is not well (& in the HOSPITAL)...that starts to be a little too much!!! Life sure knows how to throw some curve balls at us just when we think things are going pretty well! We all have experienced that multiple, multiple, times but we are patient & diligent with self care & we preserve & are back up on our feet again (hopefully sooner rather than later!!!).

I've been up all night taking care of Emma, who doesn't feel well. The difficult part about her getting sick (besides her not feeling well), is that I now sit & wait for my turn to be up next for getting the virus/bacteria...which of course sits & festers & decides to set up camp in my lungs & then boom, I'm actively sick! There's no good way for me to avoid it...hand washing etc. alone don't help the airborne illnesses my husband & daughter are always bringing home bugs then I get it!!! Anyway, I hope you start feeling better soon AND that your husbands gets well, also!!! I'll be praying for both of you! Much love, Jen

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jentaylor | @jentaylor | May 31, 2017
In reply to @tay4rake "Amakasin worked for me. I was diagnosed with pseudomonas in early 2016. The first time they..." + (show)
Profile picture for tay4rake @tay4rake

Amakasin worked for me. I was diagnosed with pseudomonas in early 2016. The first time they gave me a 14 day Rx of ciprpfloxin. I I started feeling better in a few days, but within 2 weeks of finishing the Rx the symptoms started coming back. Amakasin is very expensive. I had very good insurance at the time, but I still had over a $1000 co-pay. I had to inhale it via my nebulizer 2x a day, for 30 days. IT WORKED and worth every dollar. Pseudomonas is commonly diagnosed with people with bronchestisis and difficult to eradicate. Good luck. Best, Elaine

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Oh boy, pseudomonas is a nasty bug!!! I had it last spring & I had to get a picc line inserted & was on Cefepime for 21 days!

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jentaylor | @jentaylor | May 31, 2017
In reply to @jennifernicole "Many of the people posting on here seem to know more that some of the doctors..." + (show)
Profile picture for Jennie @jennifernicole

Many of the people posting on here seem to know more that some of the doctors I have encountered. Can anyone share what evidence of MAC/MAI on a cat scan includes? Is it nodules, ground glasz opacities, tree in bud (all things on my report but not sure if that is consistant). I was diagnosed witj MAI through lavage washings but i don't know if it is the reason I am having issues or whether whatever issues i have been having made me vulnerable to the MAI ...

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Hi Terri M, I have been on Avelox since my bronch on Wed. I often have an improvement of symptoms in the beginning of the therapy BUT after about 5-7days of taking the antibiotic, I start to decline again. Then we often have to switch to a different abtibiotic which as you all know, leads to antibiotic resistance! It is very scary to think of what antibiotics will still work for me as I age...I'm only 42 & have many years to live yet (God willing). This overuse of antibiotics & constantly stopping one too soon & starting a new one can not be a good thing. Who knows if the traditional MAC meds would work (scary thought). So all of that being said, respiratory wise, I am feeling better right now. I'm breathing pretty well & my cough is more of a cleansing, productive cough intstead of that nagging cough that's not productive.

Mon. I took a 10 min slow paced walk around the block with my daughter, Emma & our dog! It went well. Little SOB (short of breath) but I did pretty well I think. After reading Katherine's motivational post, talking some common sense into me (in a loving way), I am feeling a little more sure of myself & telling myself it doesn't matter what other people think of me when they see me with oxygen on. Wear it regardless! So I'm working on that!

I start Pulmonary Rehab next week & I am so looking forward to it! I will get to exercise in a very safe, controlled environment with constant oxygen/pulse ox monitoring along with other vital signs. It is three days a week for about 1 -1 1/2 hrs. The respiratory therapist said it should really strengthen my lungs! I'm so excited!!!

I am a long writer if you didn't notice! I will try my best to limit myself & hold myself back from over-writing! I know there are many people on Connect & trying to read through all of the posts takes a little while & add in a long one, & it takes longer! Sorry!

Take care, Terri M! Much love, Jen

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