(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.

Colleen Young, Connect Director | @colleenyoung | Apr 5, 2017

In reply to @member "This message has been removed as it contravened the Terms of Use https://connect.mayoclinic.org/terms-of-use/" + (show)

@kaystrand,
The post from "member" was spam and has been removed from Connect.

ilgrp4e | @ilgrp4e | Apr 5, 2017

In reply to @boomerexpert "@ilgrp4e there is an inhaled medication given when others aren't working properly: Amikacin - ask about..." + (show)

Thx. Yes already put her on waiting list. Hope someone cancels.

ilgrp4e | @ilgrp4e | Apr 5, 2017

In reply to @ilgrp4e "Quick question. So been back and forth with my mom with her doctors in the meds..." + (show)

Thx Pamela- she tried the Azithromycin,
Rifampin and Ethambutol. 1st all 3 then 2 week intervals to see which one was the one making her sick. Rifampin of course. It was not just the common side effects. She had the nausea,diarrhea,rapid breathing ,more coughing,fevers up to 103,uncontrollable shakes,muscle pains that were making her cry, weaknes. Just everything. Her infectious disease Dr said he isn't allowed to replace the rifampinand all he's allowed to prescribe are those 3 antibiotics. I don't gethow that can be if he's an infectious disease Dr who can treat Mac. I just don't like him. He didn't like me asking him many questions and happy to have an appt with cook but it's not till end of July and now my mom has to be on no meds till then. Hope everything goes well in between. I also got the bronchiactisis book and hope after reading it something good will come from it. I had her take but d and also some milk thistle .That should help with her liver. Also on probiatics. All her doctors have said it won't harm her taking all that and my pharmacist friend also scheduled all the meds for her since she also takes Ra meds. Now just have to wait to see cook. Hell spend 2 hours w her so I know he's a good Dr. Looking forward to it.
Carmen

Katherine, Alumni Mentor | @katemn | Apr 5, 2017

In reply to @ilgrp4e "Quick question. So been back and forth with my mom with her doctors in the meds..." + (show)

@ilgrp4e .. Carmen, your Mom is SO lucky to have you as a daughter .. a wonderful advocate! Sure hope you get into Dr. Cook with a cancellation .. I was told once it doesn't hurt to call daily (in a very nice way) to ask if a cancellation has come up that you are so worried about your Mother .. that sometimes the "squeaky wheel gets the oil". See how they react if you call daily? Good luck .. we are rooting for you! Hugs! Katherine

ijustdontbreathewell | @ijustdontbreathewell | Apr 5, 2017

In reply to @ilgrp4e "Quick question. So been back and forth with my mom with her doctors in the meds..." + (show)

Call Dr. Cook, at least get his nurse or PA on the phone, I think she should probably be taken off the medications immediately. Waiting list is great, but also ask if he has a PA or colleague who could see her or talk to her in the meantime. She cannot continue to suffer until July. As a last resort, show up at the emergency room, and let them figure it out. Doctors hate to be told what to do, and most of them can only follow protocols established by their institution for patients 1-1890000, they do not treat people, and if you do not fit the protocol to bad. Just went through this. Also do not absolutely do not take the milk thistle it is dangerous in someone that has liver issues. If you want to try herbs see a homeopathic, DO, who is in the same office with an MD, they will combine herbs, vitamins, and minerals with treatments, and medications. Good luck, sounds like we are in the same fight , wanting a real doctor, who happens to care, and know what they are doing. No one says she has to be on no meds, if the Rifampin is making her sick, through it in the trash and keep the other two. This is called a cocktail medication, the three, ideally doctors believe the 3 work better together rather than singly or just two. But it is not written in stone.

boomerexpert | @boomerexpert | Apr 5, 2017

In reply to @fransav "I have MAI for a while & so was taken off my biological meds for my..." + (show)

@fransav Yes I have advice. I have RA...you must be on a medication to manage your inflammation and pain; I too cannot use a biologic so must revert to older generation treatments. I'm on Kenalog 40mg injection (quarterly) and Naproxyn 500mg (enteric coated) as needed (usually every 3-4 days). I've begun using CBD oil 500 mg strength about 30 mgs/daily - it's helped greatly to reduce my need for the meds. Feel free to contact me via private message if you want more info. I understand the disappointment surrounding ineligibility for the better treatment but others work...perhaps not as well, but they manage the pain sufficiently.

Katherine, Alumni Mentor | @katemn | Apr 5, 2017

In reply to @ilgrp4e "Quick question. So been back and forth with my mom with her doctors in the meds..." + (show)

@ilgrp4e .. Carmen, none of us here on this Forum are doctors .. I encourage you to get medical advice SOON for your mother but personally with all your mother's health issues I would not personally make medication decisions for her without medical advice .. her situation is too complicated. I know it is terribly frustrating/AWFUL to watch her suffer but the consequences of guilt if you make medical decisions for her that make her health even worse would be a life long feeling of guilt. I really feel for you .. I am so sorry. But think through the consequences before you make medical prescription decisions for your Mother. Sending you positive energy and many hugs in this tough time! Katherine

Katherine, Alumni Mentor | @katemn | Apr 5, 2017

In reply to @fransav "I have MAI for a while & so was taken off my biological meds for my..." + (show)

@boomerexpert, thanks for jumping in to help @fransav who is so much pain .. such a tough spot to be in and not many who have the knowledge you do .. again .. thank you! Katherine

fransav | @fransav | Apr 5, 2017

In reply to @katemn "@fransav .. do you have a first name .. more personal. Oh @fransav, this must be..." + (show)

@katemn

@fransav .. do you have a first name .. more personal. Oh @fransav, this must be just awful for you! PLEASE have your Infectious Disease doctor CALL and work WITH your doctor for your psoriatic arthritis! You CANNOT live with unbearable pain AND going on the meds without the two doctors working in tandem .. OR getting to a MAJOR medical facility that can help you work this out. From my File Cabinet two that you might consider are:

MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63

** Minnesota campus for an appointment, here's the number: 507-538-3270
They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. For billing and insurance information you can call Patient Account Services at 800-660-4582, or click on this link: http://mayocl.in/2hpba1s

or JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
Member @128128terry11t, Q National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample? A I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me. If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner. Don't be afraid to call them and ask that question; they are extremely kind and professional. FINANCIAL You will have an excellent experience please call the number on the site to see if you financially could go to NJH......for the first 50 years of their existence....1898 til 1958 they did not charge clients..I am on Medicare....they accepted it fully....3 months after my trip....l have yet to see a bill....they have a separate person who works out the financial part of the visit prior. I know it sounds too good to be true....but it is there to help people. l beg you to contact them to check

@fransav .. I hope some of the above helps you .. I am so glad you found us! Please read the past pages of our Forum .. you will learn a great deal about your MAC disease .. remember KNOWLEDGE IS POWER .. and please keep coming back with ANY questions you might have .. we will be here for you. AND PLEASE Members .. please jump in if you have any thoughts/hints/help on "taken off my biological meds for my psoriatic arthritis. The Otezla I was given worked for 2 yrs, but isn't working anymore & my pain is unbearable" .. she really needs our help! Hugs to all! Katherine

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Thank you so very much! I'm going to Pulmonary Dr on Friday, will let u know what we decide from there!