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!

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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:
- 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.

janovr | @janovr | May 4, 2019
In reply to @janovr "@Bevmok" + (show)
@janovr

@Bevmok

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To anyone wanting natural help with a horrendous cough...
not from a doctor but from my homeopathic naturalist .
Order from Amazon:
Broncolin/Propolis honey cough syrup, also their cough drops and
Blue Label Clear Lung Capsules!
THEY WORK!

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sounder27 | @sounder27 | May 5, 2019
In reply to @auntnanny "sounder27 Please let me know what your doctor says" + (show)
@auntnanny

sounder27 Please let me know what your doctor says

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I will. My appointment is on the 28th.

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Mentor
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)
@sounder27

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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Mentor
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)
@pfists

@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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Mentor
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)
@auntnanny

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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Mentor
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)
@nannette

@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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2 replies
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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1 reply
Mentor
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)
@auntnanny

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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Mentor
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)
@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)
@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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