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

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:

  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

@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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@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.

Liked by nannette

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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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@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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@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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@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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@auntnanny

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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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.

Liked by pattriciaann

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@auntnanny

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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Is your doctor from the Rochester Mayo?

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@auntnanny

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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To auntnanny. Is your pulmonologist at the Rochester Mayo?

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@sounder27

To auntnanny. Is your pulmonologist at the Rochester Mayo?

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Yes, he is……. I like him very much. Let me know if you are going.

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@pfists

@windwalker
@heathert
@spencersok
@jkiemen
This is the email I received from the CEO of Vast Therapeutics a few days ago.
Sounds like its going to be in clinical trials next year if all goes well.

Fingers crossed!

Shari

I appreciate you reaching out to us.

As you already understand, we are a preclinical drug company. Our clinical studies will not be for some time (more than a year away).

Further, our clinical study will be for Pseudomonas aeruginosa infections in Cystic Fibrosis patients. So I’m not sure you would qualify.

I wish you the best of luck and we will continue working hard!

John Oakley

Chief Financial Officer

Know Bio LLC / Vast Therapeutics, Inc.

joakley@vasttherapeutics.com

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For some of you who has no result in stopping their cough with traditional medicine may want to try herbal medicine like clear lungs. One effective therapy is CHINESE ACUPUNCTURE is very effective to help many lung problem. I found this effective CHINESE ACUPUNCTURIST in St Petersburgh Florida. Dr Su Liang Ku on the 2798 66th St. N. 727-541-2666 . This 77 years old man has 50 years in General/Family Practice Acupuncture, Tuina, Herbal Medicine etc. For those of you interested I guarantee you won’t regret it. He really knows what he is doing. His session cost 70$. Just wanted to share this possibility with you. Have a great week! We are going back to Canada Tuesday morning! Nic

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@auntnanny

Yes, he is……. I like him very much. Let me know if you are going.

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To auntnanny. I will definitely keep in touch and keep you up to date. Thank you so very much for your encouragement. I appreciate your kindness and feel blessed to have found this forum.

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@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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@windwalker Yes, Terri, the cough is such a drag but I'm not giving up! I'm trying one thing at a time and one day something is going to work! And yes, we should get together soon! Nan

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@sounder27

To auntnanny. I will definitely keep in touch and keep you up to date. Thank you so very much for your encouragement. I appreciate your kindness and feel blessed to have found this forum.

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sounder27 —– have you done sputum testing? My first showed MRSA, Staph, and lots of scary sounding things. However, they were fairly easy to rid. Now I have pseudomonas and that has been more difficult. I do lots of sputum tests (take to a local lab and then fax results to Dr. Moua). Easier than driving back up there and he's perfectly happy to do that.

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