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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.

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Terri Martin, Volunteer Mentor | @windwalker | May 5, 2019
In reply to @sounder27 "To auntnanny. What is Toby?? I am couching so violently that I vomit. And my nose..." + (show)
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To auntnanny. What is Toby?? I am couching so violently that I vomit. And my nose gets stuffed up as well. I have been taking tessalon pearl but it doesn’t seem to be doing the trick anymore. I am interested in anything new that does not interfere with my heart meds or agravate my afib. I have both bronchiectisis and Mac. I recently coughed so hard that I injured my ribs and when I cough now it causes pain in my ribs and chest.

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@sounder27 Good morning. I had that nasty violent cough for years. It caused many pulled muscles in my rib area and back. Plus, put excessive pressure on my bladder. I too would throw up at times. So, I feel your pain on this. I was put on tobramycin in 2016. My cough was completely gone after 30 days on it. (Results can vary from person to person) I have been on the tobramycin ever since 2016. I am on it bi-monthly (one month on, one month off). Members in our group have also had success with Clear Lung. I am not possitive, but I think some of the ingredients (like licorice root) can cause heart palpitations. But, it may take high doses for that to occur. I hope you can find something to give you some relief.

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Terri Martin, Volunteer Mentor | @windwalker | May 5, 2019
In reply to @pfists "@windwalker @auntnanny I have been getting pretty regular washing with bronchoscopies. Got one very 3-4 months..." + (show)
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@windwalker
@auntnanny
I have been getting pretty regular washing with bronchoscopies.
Got one very 3-4 months last year one was yesterday.
I get allot of plugging because of asthma though. Now I'm on a injection once a month to halt all the mucus from asthma the injection is called nucala.
My pulmonologist did say he uses the washes to help keep the NTM out too. So I would be interested in what other doctors feel about this approach.
Shari

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@pfists Hi Shari. Do you notice a difference by having the bronchial washes and the nucala?

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Terri Martin, Volunteer Mentor | @windwalker | May 5, 2019
In reply to @auntnanny "spencersok I'm going to post a note here that may or may not be helpful. I..." + (show)
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spencersok I'm going to post a note here that may or may not be helpful. I coughed day and night for years. Truly thought I was going to die in a coughing spell. Would cause me to vomit, to wet, just the strain of the cough was horrific. I started taking two Benadryl and one hydrocodone (yes, I know it's an opioid ---- but my regular doctor said I would not be addicted with one daily. If I take those three pills after supper, it takes about 60-90 minutes to take effect, but you know..... it 90% stops my coughing and I can get through the night in pretty good shape. I used to have to sit up in bed all night with the coughing but I don't do that now. I've done this for about a year. It may quit working for me, but as long as it does, I'm going to go for it. Of course it doesn't help the daytime but I was just so thankful to be able to get some sleep.

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@auntnanny Jan, have you ever been prescribed Singulair? That was a life-changer for me.

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Terri Martin, Volunteer Mentor | @windwalker | May 5, 2019
In reply to @nannette "@bevmac Thank you so much!!! I've had two doctors and neither one of them have had..." + (show)
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@bevmac Thank you so much!!! I've had two doctors and neither one of them have had any luck with my cough so I'm going to try your doctor's supplements and see what happens! Nan (@nannette)

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@nannette I so wish you could get rid of your cough too. That constant coughing is a drag. BTW, we should get together soon.

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auntnanny | @auntnanny | May 5, 2019

windwalker ----- no, but I'll get some and try it. When you cough all the time, you'll try anything. I'm sure you know. Thanks for the tip …….. have you ever tried the broncolin honey syrup products. A lady on site here is recommending them very strongly.

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Terri Martin, Volunteer Mentor | @windwalker | May 5, 2019
In reply to @auntnanny "windwalker -- thank you for asking. I a, trying to do 30 days of toby right..." + (show)
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windwalker -- thank you for asking. I a, trying to do 30 days of toby right now. Just finished my second week. First attempt was not great -- I had trouble breathing and came off in 3 weeks. Waited about a month and want desperately to make it work. So, I'm trying again. There is some MAC in my sputum testing and Mayo doctor says if we can't stop some of the cough and phlegm with toby I may need to do the dreaded course of 3 antibiotics. I'm trying...…. I've lost a little weight and feel weak but at 78 years I assume I won't feel like a teenager. Incidentally, for other's info also, I got my first month's supply of toby at the Mayo pharmacy and they told me they were able to put it through on my Medicare B. It was cost-free to me. This time, I asked doctor to send script to my closer pharmacy -- Walgreens -- and they said they could not get it on Medicare B and they wanted 1100 dollars for a month's supply. I went back to Mayo Pharmacy and they sent it in cost free again. Don't know I this might help anyone but thought I would share the story. I'm happy to answer any questions I can if I can be of help to anyone. I'll be interested in whether your friend is still doing the bronchoscopies (sp).

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@auntnanny and all, tobramycin has to come from a Specialty Pharmacy. Both Walgreen's and CVS has them. Those specialty pharmacies cater mostly to chronic diseases like Cystic Fibrosis because the meds are so expensive. Walgreen's charged me $2500 for a 30 day supply of Toby. My co-pay on that was $500.00. Gratefully, the Healthwell Foundation pays that for me. I now get my tobi fromCVS specialty pharmacy and I believe they have a better contracted price on it.

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Terri Martin, Volunteer Mentor | @windwalker | May 5, 2019
In reply to @auntnanny "windwalker ----- no, but I'll get some and try it. When you cough all the time,..." + (show)
Profile picture for auntnanny @auntnanny

windwalker ----- no, but I'll get some and try it. When you cough all the time, you'll try anything. I'm sure you know. Thanks for the tip …….. have you ever tried the broncolin honey syrup products. A lady on site here is recommending them very strongly.

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Jan, no, I have not tried the broncolin honey products. I haven't coughed in three yrs and don't need it right now. I will keep it in mind should a cough come back.

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deborahwolf | @deborahwolf | May 5, 2019
In reply to @windwalker "@nannette I so wish you could get rid of your cough too. That constant coughing is..." + (show)
Profile picture for Terri Martin, Volunteer Mentor @windwalker

@nannette I so wish you could get rid of your cough too. That constant coughing is a drag. BTW, we should get together soon.

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Wish I could be there too. Looking forward to seeing you friends when I am back in July!

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sounder27 | @sounder27 | May 5, 2019
In reply to @auntnanny "sounder27 Toby is short for the word tobramycin. Mayo's say they are having great results but..." + (show)
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sounder27 Toby is short for the word tobramycin. Mayo's say they are having great results but that it takes a few months. They recommended (to me) 4 weeks on and 4 weeks off. Then repeat for several months. Windwalker on this site has used it successfully and I'm trying. It is an inhaled antibiotic that goes directly to the lungs and I believe one bacteria it targets is pseudomonas (which I have). They asked me to use a different dispensing cup from the one that usually comes on a nebulizer. This one breaks it down into a fine mist. I believe it is available (not costly) on Amazon and I'll get the name of it if you are interested. I told Mayo Doctor I had been on this two weeks and was still coughing and he assured me that we needed to stay longer. Two weeks would not take care of it. I just hope he's right. Perhaps Windwalker will come on and help you more with this product. I believe she said after using it she was cough free for a couple of years. Sounds like heaven to me. I believe tobramycin is an older antibiotic but the new way of getting it into your lungs seems to be what they feel is so important. I hope this is helpful to you in some way. Windwalker is also with Mayos (Florida) and I'm with them in Minnesota so I believe it is what they are recommending.

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To auntnanny. I am from Rhode Island and i’m wondering if I should make an appt with the Mayo in Rochester. It would be closest to me.

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auntnanny | @auntnanny | May 5, 2019

sounder27 I would do it as quickly as possible. I was in bad shape when I decided I had to do something or I was going to die. I'm down on the Ks/Okla state line -- a 10-hour drive but I just called up there one day and they took me right in in 4 days. I didn't know what I had at that time. Had been misdiagnosed locally for 5-6 years. So, I actually asked for gastroenterologists because my regular care doctor thought it was reflux. It took 3 gastro guys on 2 hours to tell me it certainly wasn't reflux and that it was bronchiectasis. They said we want to get you with one of our best pulmonologists and his name is Teng Moua. It took maybe a month to see him but oh my...… such a nice, kind and compassionate man. Took all the time I needed explaining the diagnosis. I had never heart the word bronchiectasis and I asked him if I were going to die from it. He smiled..... said you will die with it..... but hopefully not from it. I think we can manage the disease. It is chronic and there is no cure. They ran sputum tests at that time and of course had results in a couple of hours. I was sent home with meds that did immediately start to help. When I would have episodes again with coughing and phlegm, I could have sputum test run locally (he would fax a prescription for it if your doctor won't write it). Then I would fax the results to him the following day and he would prescribe from that. It's an ongoing situation but I've never dreamed there would be a place like Mayo's. Truly the best. His med Secretary's number is 507 284 5398. You might simply contact her and perhaps could get you in earlier than if you go through channels. Or..... maybe there is another pulmonologist who could see you quicker. But this number is only for Dr. Moua. They have a portal to which you can keep contact with him and he responds to the notes you write on that portal if you have questions. I do not know anyone who has not been ecstatic about the doctors there and the facility. If you do decide to do this, write me again and perhaps I can help you with hotel, etc.

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