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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 25, 2017
In reply to @beatitnow "@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask..." + (show)
@beatitnow

@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask you more about your post (thank you for your input)...so once you were on the Big 3 meds, could you "feel" your acid reflux? If so, how? Just curious what symptoms to watch out for if the meds in fact increase stomach acid. Thank you! Amy

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<br><br><br><br><br>Hello. My endoscope revealed the onset of Barrett's, and a scan showed some <br>corrosion from the acid. Treatment was Omeprazole 40 mg 30 mins to an hr before <br>eating, no alcohol, no food or drink except water three hrs before bed. (alcohol <br>is really bad for Barrett's) Suggested propping up head of bed 6" so that you <br>are tilted so that uses gravity to keep your stomach acid down in your stomach. <br>I did all except for raising my bed. I sleep on two pillows, but they say that <br>isn't good enough. I am an interior designer so the thought of seeing a tilted <br>bed really bothered me. If I had continued to have issue with the reflux; I <br>would have done it anyway. I have not experienced the intense burning since <br>I went on this regimen. I also avoided acidic food and drink for awhile to allow <br>my esophagus to heal. I have Googled the treatment plan and it is pretty <br>standard. Hope this helped.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 25, 2017
In reply to @katemn "Dear All, I apologize for not connecting with you sooner but I have been very ill...." + (show)
@katemn

Dear All, I apologize for not connecting with you sooner but I have been very ill. I was diagnosed with Pseudomonas Aeruginosa, Klebsiella and Serratia bacterias. I have essentially been sleeping or with whatever small energy reserves I have had .. dealing with the red tape of insurance and Mayo Clinic. It has been hell on wheels to be honest .. really a horrible experience for a sick person to have to go through. I FINALLY have an appointment on Wednesday for a test dose of Tobramycin at Mayo Clinic Rochester MN after my local doctor (nicely .. positive it is due to fear of malpractice) refused to do the test dose. The 28 days of Cipro 2x per day failed to help me so the next step is the Tobramycin. Please forgive my absence and know that I will be back on Connect as my health allows .. but it just hit me like a ton of bricks and sleep is all my body wanted. Please take care of each other until I am back .. and watch for newcomers .. you know what it was like. Hugs to all! Katherine

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<br><br><br><br><br>Hello. I got three opinions about the meds when I was diagnosed in 2005. <br>Two out of three drs said they wouldn't recommend the treatment because it is <br>hard on the liver and it doesn't irradicate the Mac, it only knocks down the <br>numbers in a colony. I was treated with one antibiotic, and was fine for years. <br>It grew in number again in 2013, then I was put on a monthly regimen of <br>alternating antibiotics. Then, Jan. 2016 showed Pseudomonas aspigillus and then <br>monthly meds got changed. I don't know if refusing the triple med treatment was <br>a mistake or not. I have steadily been losing lung function over the years. My <br>advice is to get sputem tests done every 2 -3 months whether you decide to treat <br>or not. STAY ON TOP OF IT! Don't let it creep up on you and destroy lung <br>tissue.<br> <br><br>

REPLY
pamelasc | @pamelasc1 | Apr 25, 2017
In reply to @katemn "Dear All, I apologize for not connecting with you sooner but I have been very ill...." + (show)
@katemn

Dear All, I apologize for not connecting with you sooner but I have been very ill. I was diagnosed with Pseudomonas Aeruginosa, Klebsiella and Serratia bacterias. I have essentially been sleeping or with whatever small energy reserves I have had .. dealing with the red tape of insurance and Mayo Clinic. It has been hell on wheels to be honest .. really a horrible experience for a sick person to have to go through. I FINALLY have an appointment on Wednesday for a test dose of Tobramycin at Mayo Clinic Rochester MN after my local doctor (nicely .. positive it is due to fear of malpractice) refused to do the test dose. The 28 days of Cipro 2x per day failed to help me so the next step is the Tobramycin. Please forgive my absence and know that I will be back on Connect as my health allows .. but it just hit me like a ton of bricks and sleep is all my body wanted. Please take care of each other until I am back .. and watch for newcomers .. you know what it was like. Hugs to all! Katherine

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Dear Katherine - you are such an important mentor to so many of us and it makes me sad to know you are going through this terrible time. But you have trained us well and so many others are able to carry on in your footsteps to keep the dialogue going and support those who are new to the forum - we just want you to get better, so rest, rest, rest! I am sending you love and wishes for feeling better soon. Pamela

REPLY
boomerexpert | @boomerexpert | Apr 25, 2017
In reply to @katemn "Dear All, I apologize for not connecting with you sooner but I have been very ill...." + (show)
@katemn

Dear All, I apologize for not connecting with you sooner but I have been very ill. I was diagnosed with Pseudomonas Aeruginosa, Klebsiella and Serratia bacterias. I have essentially been sleeping or with whatever small energy reserves I have had .. dealing with the red tape of insurance and Mayo Clinic. It has been hell on wheels to be honest .. really a horrible experience for a sick person to have to go through. I FINALLY have an appointment on Wednesday for a test dose of Tobramycin at Mayo Clinic Rochester MN after my local doctor (nicely .. positive it is due to fear of malpractice) refused to do the test dose. The 28 days of Cipro 2x per day failed to help me so the next step is the Tobramycin. Please forgive my absence and know that I will be back on Connect as my health allows .. but it just hit me like a ton of bricks and sleep is all my body wanted. Please take care of each other until I am back .. and watch for newcomers .. you know what it was like. Hugs to all! Katherine

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You take care of you and we'll take care of each other

REPLY
heathert | @heathert | Apr 25, 2017
In reply to @katemn "Dear All, I apologize for not connecting with you sooner but I have been very ill...." + (show)
@katemn

Dear All, I apologize for not connecting with you sooner but I have been very ill. I was diagnosed with Pseudomonas Aeruginosa, Klebsiella and Serratia bacterias. I have essentially been sleeping or with whatever small energy reserves I have had .. dealing with the red tape of insurance and Mayo Clinic. It has been hell on wheels to be honest .. really a horrible experience for a sick person to have to go through. I FINALLY have an appointment on Wednesday for a test dose of Tobramycin at Mayo Clinic Rochester MN after my local doctor (nicely .. positive it is due to fear of malpractice) refused to do the test dose. The 28 days of Cipro 2x per day failed to help me so the next step is the Tobramycin. Please forgive my absence and know that I will be back on Connect as my health allows .. but it just hit me like a ton of bricks and sleep is all my body wanted. Please take care of each other until I am back .. and watch for newcomers .. you know what it was like. Hugs to all! Katherine

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@katemn you sure have your hands full at the moment. I hope i the tobramycin knocks those nasty bugs quick smart. We need some new drugs and therapies as soon as possible to kill all these bugs. Take care, hope you are feeling better soon!

REPLY
ginak | @ginak | Apr 25, 2017
In reply to @katemn "Dear All, I apologize for not connecting with you sooner but I have been very ill...." + (show)
@katemn

Dear All, I apologize for not connecting with you sooner but I have been very ill. I was diagnosed with Pseudomonas Aeruginosa, Klebsiella and Serratia bacterias. I have essentially been sleeping or with whatever small energy reserves I have had .. dealing with the red tape of insurance and Mayo Clinic. It has been hell on wheels to be honest .. really a horrible experience for a sick person to have to go through. I FINALLY have an appointment on Wednesday for a test dose of Tobramycin at Mayo Clinic Rochester MN after my local doctor (nicely .. positive it is due to fear of malpractice) refused to do the test dose. The 28 days of Cipro 2x per day failed to help me so the next step is the Tobramycin. Please forgive my absence and know that I will be back on Connect as my health allows .. but it just hit me like a ton of bricks and sleep is all my body wanted. Please take care of each other until I am back .. and watch for newcomers .. you know what it was like. Hugs to all! Katherine

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The same thing also happened to me in October. I never had any problems or symptoms at all before that. I just felt a sort of gurgling just below my throat and it kind of bubbled up and made me cough. When I tasted it in my mouth I spit into a tissue and saw the bright red blood. It happened a few times for about half an hour. I went to ER and a CT scan showed some nodules. It happened about 6 more times with 5 more trips to ER over the next 2 months until I finally had lung surgery in December when they removed the large nodule. No more bleeding after that. That's when I was Dx with MAI. No meds for me yet since I have no other symptoms. I just saw Dr. Kamelhar at NYU and will be scheduling a swallow test and sputum induction (? not sure I have the right term for that). He also said I have bronchectasis and wants me to get an Aerobika to start with and then start treating my acid reflux first. I'm very happy I found this forum and have a learned a lot. I don't offer en comment but I read the posts every day.
Also, Katherine I'm sorry you're not feeling well and hope you recover quickly.
Gina K

REPLY
beatitnow | @beatitnow | Apr 25, 2017
In reply to @beatitnow "@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask..." + (show)
@beatitnow

@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask you more about your post (thank you for your input)...so once you were on the Big 3 meds, could you "feel" your acid reflux? If so, how? Just curious what symptoms to watch out for if the meds in fact increase stomach acid. Thank you! Amy

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@windwalker....Thank you Terri. I got my results back today and it was Barretts. 🙁 I never have had any intense burning to make me think I had acid reflux.....I only got tested because so many MAC/MAI patients have acid reflux. So scary if I never got tested!

Did your doctor have any other encouraging words about Barretts....like if you take this PPI you should be fine? Do you need to get an endoscope every 3 years? That is what my brother in law has to do. He has had Barretts for 15 years.

Lastly, did they tell you to follow any certain diet? Or avoid certain foods? Thank you so much!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 25, 2017
In reply to @beatitnow "@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask..." + (show)
@beatitnow

@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask you more about your post (thank you for your input)...so once you were on the Big 3 meds, could you "feel" your acid reflux? If so, how? Just curious what symptoms to watch out for if the meds in fact increase stomach acid. Thank you! Amy

Jump to this post

<br><br><br><br><br>So sorry to hear your diagnosis. I do not have full on Barretts, but I was <br>beginning to have it; therefore, no, I do not need to be retested every three <br>months. Was told to avoid drinking alcohol or drink sparingly, do not eat or <br>drink anything except water three hrs prior to bedtime, and raise the head of my <br>bed 6". Barretts can be very dangerous as it can lead to esophageal cancer. I <br>would learn all that I could about it and be sure to be mindful of caring for <br>it. You can Google a wealth of info about it to find out which foods may <br>aggravate the condition. I avoided acid foods like citrus, tomatoe sauce, coke, <br>things like that; that might irritate my throat further. I had open corrosion <br>going on. It has since healed. Take care of yourself, Terri M.<br> <br><br>

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 25, 2017
In reply to @beatitnow "@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask..." + (show)
@beatitnow

@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask you more about your post (thank you for your input)...so once you were on the Big 3 meds, could you "feel" your acid reflux? If so, how? Just curious what symptoms to watch out for if the meds in fact increase stomach acid. Thank you! Amy

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@beatitnow and @windwalker,
We have a number of members talking about Barrett's esophagus in the Digestive group (https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/).

You may wish to check out these discussions:
- Acid Reflux and its Symptoms http://mayocl.in/2mcv8vh
- Intestional metaplasia and Barrett esophagus http://mayocl.in/2bVTPwm
- Barrett's esophagus, gastroesophageal reflux disease and acute gastritis http://mayocl.in/2aSjxzJ
- Achalasia of esophagus with reflux http://mayocl.in/2cfhyny

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 25, 2017
In reply to @beatitnow "@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask..." + (show)
@beatitnow

@tdreli, @nannette, @rosemarya, @irene5....thank you all for your responses on the endoscopy. @nannette....I wanted to ask you more about your post (thank you for your input)...so once you were on the Big 3 meds, could you "feel" your acid reflux? If so, how? Just curious what symptoms to watch out for if the meds in fact increase stomach acid. Thank you! Amy

Jump to this post

<br><br><br><br><br>Thank you Colleen. Please don't add me to their list, I have all I can <br>attend to right now. That is not a concern of mine right now. Trying to <br>concentrate on keeping my lungs healthy at the moment.<br> <br><br>

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