(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

oh my goodness, have any of the infections gone?

Pamela, I just started my treatment last month so I'm a long way from being able to answer that question. Sorry I can't help on that one!

Thank you Katherine for making this more clear to me... as discouraging as it is to learn this, it is no doubt important to be realistic about the disease. It seems most of us are in our sixties and seventies (I am 67).  If anyone has any connection to people in their 80s and 90s who have had MAC and the treatment, it would be interesting to hear how they are doing and what life has been like for them in their later years.  You ( or someone) mentioned a "spray" that you have on hand when you travel, but I can not find that email.  Could you tell us again how you prepare yourself to travel on a plane in order to minimize the risk of infection?  Clearly the key is to be very vigilant and try not to scar or damage the lungs any further.  Thank you, as always, for your informative and caring replys to my questions. Pam   

Heathert,
I wish i could say yes, but im going in circles. I met my rheunatologist a year ago. I moved to SC for better healthcare, He said "mam i feel so bad for you, we really can just make you comfortable". I knew there was more to my problen than arthritis and nerve pain, i progeessed to quicjly for that. He realized it too after i went to hospital and the lesion and infections kept.coming.

The sinus infection last month caused jaw pain, black eye, mouth Sore etc. Now i seem to feel as bad as i did in my gut again and the sweats.
I have choices to make because i keep going on and off methotrexate too which is really hard on me. Im 46 and have been on it since i was thirty.
I worked at NIH while in college so i know to come to a place like Mayo for help when everything else isnt working.
I'm alread on disability and my husband helps me so much. We take our dog Roxi to the beach when i can, thats always fun.
Sorry if im writing too much, its nice for you and the other members concern it feels good.
Julie

@pamelasc1, Pam, to be honest .. I doubt very much if we will hear from people in "their 80s and 90s who have had MAC and the treatment, it would be interesting to hear how they are doing and what life has been like for them in their later years.'

Why? BECAUSE I grew up in Montana (part of the time without running water!) and at age 73 find myself MUCH more computer literate than MANY of my contemporaries. I doubt those in their later years spend much time on a computer period .. let alone our Forum. BUT I still would LOVE to hear from one of them on our same journey .. OR from a family member letting us know how they are doing! Great idea!

TRAVEL-HALO AND AIRBORNE
In terms of travel .. I JUST had that experience! Traveling with someone who caught a terrible virus that turned into a bacterial ... coughing constantly! During the trip I was able to "nicely" avoid her .. BUT then had to sit across the aisle for 10.5 HOURS on an airplane! The morning of departure I started sneezing like crazy .. nose running like a sieve! SO I jumped on my usual travel remedies. I will tell you what works for me .. may NOT work for anyone else .. but I kept it up for three days solid .. AND did NOT get that infection .. OR stopped it in it's tracks! YEAH!
MY LINE OF DEFENSE TO AVOID TRAVEL COLDS/VIRUS:
1. Airborne Vitamin C 1000mg Immune Support Supplement .. several times a day
https://smile.amazon.com/Airborne-Vitamin-Support-Supplement-Effervescent/dp/B000WZI4WY/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1483906644&sr=1-1&keywords=airborne%2Bcold&th=1
2. MORE IMPORTANTLY I THINK .. I have only found it on Amazon.com but I think it works WONDERFULLY! Used it MANY times a day when I felt I was starting to get this bacterial infection .. don't even follow directions .. sorry! Halo Oral Antiseptic, Citrus,
https://smile.amazon.com/Halo-HL00101-Oral-Antiseptic-Citrus/dp/B009240FPK/ref=sr_1_2_s_it?s=hpc&ie=UTF8&qid=1483906763&sr=1-2&keywords=halo+oral+antiseptic+spray
I don't know about you .. but with my MAC PLUS Bronchiectasis I just seem to catch ANY cold/flu virus out there .. anywhere in the vicinity of me! So the day before airplane travel I use Airborne 2 times .. and Halo at least 3 times. The day of travel I try to do the same thing .. at least Airborne in the am before departure .. and then Halo 3-4 times. Then on the trip if I feel fine .. I just use the Halo 1 or 2x per day just to boost my immune system. This seems to work for me!
Also in my daily life if I hear anyone appearing to have a sick cough around me .. I grab my Halo Spray (carry it in my purse at all times!) and spray away! Pam, Hope this is helpful! Hugs! Katherine

@jewel8888 I really feel for you, I hope they can find some answers for you and get onto it quick, mayo sounds like a great place, im sure they will get you sorted, I bet your dog helps alot I know mine is a great comfort to me. Please let us know how you get on.

@jewel8888, Julie, my heart goes out to you. I am SO glad you mentioned going to Mayo Clinic .. people from all over the world fly to Mayo Clinic, Rochester MN for the outstanding help they can get there .. TEAMS OF DOCTORS .. they WILL get to the bottom of what is going on with you.

If I was you .. just age 46 .. WOW .. Here is what I would do if I was sitting in your shoes at only age 46 with YEARS ahead of GREAT living!
1. I would collect AN/Y/ALL medical records I could get my hand on from ANY/ALL doctors you have seen. It may take them emailing you Authorizations for Release of Information .. BUT DO get started.
2. Contact Info given to me for: MAYO CONTACT
If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota
* 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
3. Schedule a flight to MSP .. the Minneapolis airport .. OR you can fly right into Rochester MN
4. Rent a hotel room that is walking distance from Mayo Clinic. You can google all these things. I have stayed in hotels in Rochester .. not fancy but close by. You will not need a car.

Hope this helps you Julie .. but if you have read the posts on our Forum .. you KNOW how big I am on being your OWN best advocate!! That NO ONE cares about your body as much as you do .. AND if you don't take good care of IT .. IT CANNOT take good care of you. Sending you a hug in this tough time! Katherine

I am flying tomorrow and I got all that was recommended through amazon.  Thank you again, Katherine.    TerryGerms Be Gone! 

Excellent plan, Kate. I believe seeing multiple docs during that visit will be ideal. Is going out of state affordable for you, Julie?

Hi everyone,
The number of members talking about MAC/MAI/NTM and Bronchiectasis has grown so much that it was time to move the discussions into a group dedicated to MAC & Bronchiectasis. Please visit the new group page here: https://connect.mayoclinic.org/group/mac-bronchiectasis/ and follow the group by clicking + FOLLOW in the corner of the group description.

Everything else will continue to work as it always has. You will continue to get email notifications and connect with the people you know, and welcome new members.
Please let me know if you have any questions.
Colleen