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Katherine, Alumni Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011

(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by @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

REPLY

@anniepie

@america Glad you're feeling better now Rita. Was the coughing and sore throat a flare up of the NTM? I get a very sore throat when I have had the NTM exacerbations. What meds are you taking for MAC?
Yes Sjogrens is a hassle. Do you use the mouth gel — In Australia it's called Oral Care or Oral Balance gel. I do on and off. But yes its very hard when you're sick with a bad sore throat.
But you're not alone. Hugs, Annie

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Hi anniepie, I took the big 3 about 3 years ago. And I was doing good with no meds after that for about 2 years. This year was not good to me I got sick a lot and I found this group that actually saved me. Windwalker is amazing! She told me about Mayo Clinic and I am being treated there. I was on Tobramycin for almost 2 months and I started with the sore throat and I had to stop. So I’m not on any meds now. But I will be starting something different soon. I may be staying azithromycin not quite sure until I speak with my doctor. And yes I did use it and got ringing in my ears not constantly it would come and go. I wish I could help. Hugs!!! Hang it there it’s a long journey but we are doing it. Rita

@anniepie

@heathert @windwalker @boomerexpert @america Do any of you know if many people get tinnitus/hissing sound in the ears from taking Azithromycin? I've only been on it a short time but the tinnitus has definitely come on. Now with me all the time. Is there anything that helped? Did it go away? Thanks, Annie

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@anniepie I realize you didn’t ask me that, but I did get tinnitus from the azithromycin. (Irene5)

Liked by anniepie

@anniepie

@heathert @windwalker @boomerexpert @america Do any of you know if many people get tinnitus/hissing sound in the ears from taking Azithromycin? I've only been on it a short time but the tinnitus has definitely come on. Now with me all the time. Is there anything that helped? Did it go away? Thanks, Annie

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@anniepie I had tinnitus off and on from back in the early 1990's. It was never too loud and would go away often for long periods of time. My tinnitus became pretty severe this past summer and it is either from the azithromycin or tobramycin – it began when I was finishing up the Tobi and starting on the azithromycin, so I'm not sure which one got it going but now it's loud and almost constant. I have learned to ignore it a good deal of the time, but sometimes it's just not possible. Just another new "normal." I have seen a commercial on TV about a group that can help people with this and read an article about it. If you Google, you can probably find some information but my ENT told me it is what it is. Linda

@anniepie

@heathert @windwalker @boomerexpert @america Do any of you know if many people get tinnitus/hissing sound in the ears from taking Azithromycin? I've only been on it a short time but the tinnitus has definitely come on. Now with me all the time. Is there anything that helped? Did it go away? Thanks, Annie

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@anniepie I'm not on meds so don't know…

Liked by anniepie

@anniepie I have also had ringing in my ears (mainly noticed it at night) from the meds, and upper hearing loss ,but not to bad, my audiologist said just try to ignore it and you wont notice it so that is what has happened. She also said that everyones is the same but the more we concentrate on it the worse it seems. I dont know if this is always the case but it worked for me, unfortunatly my hearing loss is still there tho.

Liked by anniepie

Hi everyone, I am posting for the first time though have been reading this chat site since I was diagnosed with MAC this past July. I had had symptoms for about three years of the cough and shortness of breath during exertion but didn't go to a doctor until I was coughing up blood. The first doctor gave me Azithromycin and told me not to come back unless the cough persisted. Then i changed doctors. I have a good pulmonologist now who has been treating me with an inhaler of salmeterol/fluticasone powder and an emergency inhaler of advair (which I rarely use). Recently, I felt the coughing had lessened somewhat as I began eating a anti-inflammatory diet (i.e., get rid of all the things you like), one of the components of which is celery which supposedly reverses inflammation. My doctor doesn't seem to want to treat me with the antibiotics; I guess because my symptoms don't bother me enough to be worth it. However, a week ago, I became suddenly aware I was coming down with something, felt like a flu, began to be achey, got a fever and a headache and my cough became worse and really chronic (productive – tons of green sputum), I stayed in bed the next day and the next and the next figuring it was a long-lasting flu. But the cough continued to the point where I asked my doctor to prescribe me some hydrocodone so I could sleep. This worked the first two nights, but now the cough continues no matter if I take a tspn of the cough medicine or not. When I went to see my doctor to get the prescription (day 3), she did a flu test and said, "well, it's not the flu." She said to call if I didn't improve by day 5. I continued to have cough plus low fever (100 and 101.5) so I got a script for Azithromycin (today is day 2 of 5 days), and fever is gone but I still feel this rawness (as if someone was blowing an icy wind down my throat) in my esophagus and I have a constant cough reflex, still productive, but less so. Then I wondered, maybe when you catch a virus and you already have an infection, could the infection get worse? Does anyone have experience of getting a virus, flu, or cold while not being treated for MAC? Thanks, and sorry to be so long-winded. Wanting to know if I'll ever be able to breathe normally again.

@skylarkny

Hi everyone, I am posting for the first time though have been reading this chat site since I was diagnosed with MAC this past July. I had had symptoms for about three years of the cough and shortness of breath during exertion but didn't go to a doctor until I was coughing up blood. The first doctor gave me Azithromycin and told me not to come back unless the cough persisted. Then i changed doctors. I have a good pulmonologist now who has been treating me with an inhaler of salmeterol/fluticasone powder and an emergency inhaler of advair (which I rarely use). Recently, I felt the coughing had lessened somewhat as I began eating a anti-inflammatory diet (i.e., get rid of all the things you like), one of the components of which is celery which supposedly reverses inflammation. My doctor doesn't seem to want to treat me with the antibiotics; I guess because my symptoms don't bother me enough to be worth it. However, a week ago, I became suddenly aware I was coming down with something, felt like a flu, began to be achey, got a fever and a headache and my cough became worse and really chronic (productive – tons of green sputum), I stayed in bed the next day and the next and the next figuring it was a long-lasting flu. But the cough continued to the point where I asked my doctor to prescribe me some hydrocodone so I could sleep. This worked the first two nights, but now the cough continues no matter if I take a tspn of the cough medicine or not. When I went to see my doctor to get the prescription (day 3), she did a flu test and said, "well, it's not the flu." She said to call if I didn't improve by day 5. I continued to have cough plus low fever (100 and 101.5) so I got a script for Azithromycin (today is day 2 of 5 days), and fever is gone but I still feel this rawness (as if someone was blowing an icy wind down my throat) in my esophagus and I have a constant cough reflex, still productive, but less so. Then I wondered, maybe when you catch a virus and you already have an infection, could the infection get worse? Does anyone have experience of getting a virus, flu, or cold while not being treated for MAC? Thanks, and sorry to be so long-winded. Wanting to know if I'll ever be able to breathe normally again.

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@skylarkny I'm just adding something to my last post, which is is there any different treatment I should do? I also started taking Benzonatate for the cough, but can't see results yet. Thanks!

@skylarkny, Hi there. Sounds like you aren't doing very well right now. Just a heads up, green sputem usually indicates infection. If the coughing up gunk continues after a week, insist that your dr get a sputem sample from you for testing. Ideally, have it sent to either Mayo Clinic or National Jewish Health. Those two places have the best labs for testing mac. They can test for specie, colonycount, and do a suseptibilty test. That is a test to see what specific drugs will work against it. Azithromycin is strong and will remain in your system awhile, so give it time to work. If it doesn't knock out whatever bug you have; you may need a longer, more consistant treatment.

@skylarkny

@skylarkny I'm just adding something to my last post, which is is there any different treatment I should do? I also started taking Benzonatate for the cough, but can't see results yet. Thanks!

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@skylarkny Hi. Me again. Just wanted to pass it along that when I had that God-aweful cough, I'd drink 'Breath Easy' tea by Traditional Medicines. Can be purchased at some grocery stores in the Natural Food isle. It helped me a lot. I hope you feel better soon.

@heathert

@anniepie I have also had ringing in my ears (mainly noticed it at night) from the meds, and upper hearing loss ,but not to bad, my audiologist said just try to ignore it and you wont notice it so that is what has happened. She also said that everyones is the same but the more we concentrate on it the worse it seems. I dont know if this is always the case but it worked for me, unfortunatly my hearing loss is still there tho.

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@heathert Thanks so much for replying Heather, and your kind advice. I was wondering if this means the hearing loss will get worse if I stay on the Azithromycin, or will just stay this bad but not get worse?.
The docs didn't stop the medication for you? That's hopeful. I felt this drug had already started to help fight the NTM and was worried if I have to stop it because of the hearing problems.
I will see my GP/primary carer about it tomorrow.
Thanks again Heather, hope you are doing okay. Hugs, Annie

Liked by heathert

@irene5

@anniepie I realize you didn’t ask me that, but I did get tinnitus from the azithromycin. (Irene5)

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@irene5 Hi Irene, sorry, I don't know everybody here. I should have just asked for anyone who might know. Hope you are going okay. How long have you been on the meds/big 3? Did you get tinnitus but was advised by the docs to keep taking Azithro? Would love to know this. Or did you have to stop taking it? Hugs to you, Annie

@lindam272

@anniepie I had tinnitus off and on from back in the early 1990's. It was never too loud and would go away often for long periods of time. My tinnitus became pretty severe this past summer and it is either from the azithromycin or tobramycin – it began when I was finishing up the Tobi and starting on the azithromycin, so I'm not sure which one got it going but now it's loud and almost constant. I have learned to ignore it a good deal of the time, but sometimes it's just not possible. Just another new "normal." I have seen a commercial on TV about a group that can help people with this and read an article about it. If you Google, you can probably find some information but my ENT told me it is what it is. Linda

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@lindam272. Thanks to you Linda for replying. Yes it's like that — when you've got it it's the new normal..
Did the doctors tell you to keep taking the Azithromycin anyway? Has it got worse with taking Azithro for longer or stayed pretty much the same? I appreciate your help so much Linda and hope things work out well for you, Annie

@boomerexpert

@anniepie I'm not on meds so don't know…

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@boomerexpert Thanks for replying anyway. This group is really helpful and supportive. Hugs, Annie

@america

Hi anniepie, I took the big 3 about 3 years ago. And I was doing good with no meds after that for about 2 years. This year was not good to me I got sick a lot and I found this group that actually saved me. Windwalker is amazing! She told me about Mayo Clinic and I am being treated there. I was on Tobramycin for almost 2 months and I started with the sore throat and I had to stop. So I’m not on any meds now. But I will be starting something different soon. I may be staying azithromycin not quite sure until I speak with my doctor. And yes I did use it and got ringing in my ears not constantly it would come and go. I wish I could help. Hugs!!! Hang it there it’s a long journey but we are doing it. Rita

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@america Rita, thanks for replying — it seems the hearing problems can happen with most of the 'mycins. Oh you do help me, a lot – that's for sure I feel so much better knowing I'm not alone with this. Very glad you're at Mayo Clinic and hope this time really works. Annie

@helem

I have tinnitus since I have been on the drugs since July. Have you had your hearing checked? I didn’t know to get a baseline and when I went after three months I had a little hearing loss in the upper range. Since I hadn’t had a baseline I don’t know if the drugs caused the loss. I’m going to go in soon for another hearing test. To tell you the truth, I’ve just gotten used to the tinnitus.

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@helem Thanks Helen. Yes I had a baseline hearing check before starting the drugs. I was hoping not to have problems, and really wasn't expecting to so soon — but apparently it happens pretty quickly sometimes. Wow it seems like a lot of us have gotten tinnitus with the meds. Hugs for you, we're all in this together, Annie

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