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.

Lisa Y | @tutti | 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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Your bleeding is exactly what happens to me. Sorry to hear you have this problem too. It is nice to compare notes with someone who has the same symtom. I am not taking any meds yet either. I'm just being watched at this time. This blood is the only symptom I have.  I have to travel 60 miles to my ID Dr. at a large university hospital.  What I have is rare to them, that's why I go to Mayo since they are #1. I really don't want to take the meds but I will if they feel I should. Very scary!  

REPLY
Lisa Y | @tutti | 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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It is comforting to hear your experience.  I would have went to the ER if it wouldn't have stopped so soon. The most recent only lasted a short time. I don't have confidence in the hospitals near me. I'm going to have to do some research for future reference. Thanks!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 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 Oh, Katherine - I'm so sorry to hear that you have been so ill! Please take it easy. We will manage, albeit not as well, in your absence. Your health and well being is most important now! Blessings to you my friend! Teresa

REPLY
chinasmom | @chinasmom | 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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So glad you posted. I know how hard it is to fight to feel well and fight for the right medication. Last year i was prescribed toby podhaler and its not approved for non cf bronchiecasis pseudomonas only for cf, which makes no sense, so insurance wouldn't pay and we lost the appeal. Now im fighting them to cover my pain medicine that I've been on for years. Its like having to write a research paper while you've got the flu. I had cipro last month that didn't help, but they won't see me til May. I have a ct scan before the appointment so at least will have new information. That's always good. No need to reply. I hope you get what you need and feel better soon! You are loved!
Becky

REPLY
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>Hi there. Am wondering if you are on Medicare by any chance? They covered <br>80% of my Toby, and there are scholarships out there to help pay for the rest. <br>Best of luck, Terri M.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 25, 2017
In reply to @becky33 "I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis,..." + (show)
@becky33

I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I'm happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I'm very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he's treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn't started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn't stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr's office making the appointment. If you want his #, I can give it to you.

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<br><br><br><br><br>Becky, that sounds like an aweful thing to tolerate. Is this <br>reversable?<br> <br><br>

REPLY
ling123 | @ling123 | 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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@tutti Lisa, I feel the same way. The pulmonary specialist I've been seeing since 2014 has given me options of drugs or no drugs. He thinks because I don't have other symptoms and live a normal life except the blood, the side effects from these drugs being taken for long term outweigh the benefit. But if I decide to take them he will prescribe. As scary as this is, I'm actually more scared of the prospect of side effects and how they may interfere with my daily living. So I decided against it and still have not changed my mind even after I had blood clots in my sputum last month. However, when/if the doctor feels that it is time for me to start drug regimen, I will follow his advice.

REPLY
chinasmom | @chinasmom | Apr 25, 2017
In reply to @megan123 "I have Bronchiectasis and NTM Mac. Recently had a cat scan and it showed some new..." + (show)
@megan123

I have Bronchiectasis and NTM Mac. Recently had a cat scan and it showed some new bud tree nodules. Does this mean my NTM is active??? My oulmonary guy never explains anything. In process of a second opinion. Have minimal symptoms of Mac. Little sputum, no cough. Have been getting some nite sweats but not sure if it's menopause. help...

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@becky33, Yes, I'm so glad you watched. They have them for 2015 and 2016. Everyone should watch them and wait while and re watch them . Its information you cant get anywhere else. Im going through my second time and taking notes this time. We have to arm ousseves with information!! Stay strong
Becky

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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....Hi Terri, would it be possible to post what Mayo's treatment plan was for your acid reflux? Or is it too much?

I had my endoscopy...I am waiting on biopsy results but they took a biopsy to see if a small part of my lining is Barrett's. Did they diagnose you with Barrett's, Terri? Thank you for your help!

REPLY
chinasmom | @chinasmom | 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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@ling123, thanks for shareing your story with @ tutti!
Becky

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