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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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Just checking in.
Posted by @windwalker in MAC & Bronchiectasis, 2 minutes ago
Hello everybody. I have not posted in a while, so I am just checking in. I will be missing in action for the next month as I will have a steady stream of visitors until mid April. I am still doing exceptionally well. Still active and making lots of jewelry. Still on my alternating antibiotics of Cipro & Tobramycin. Just working at staying healthy. Go back to the Mayo June 20. I hope that each and every one of you are doing well also. I read the posts and it seems like you all are on top of things. Hugs! - Terri M.
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@windwalker Terri, moved you to the Main Page .. we NEED such good news on the Main Page! SOOOO Happy to hear from you that your Pseudomonas is doing so well! Enjoy your visitors and let us know how your June appointment goes! Hugs to you! Katherine
@kaystrand, Kay, thanks for jumping in .. this may be helpful for @merilee as she deals with her issues .. she has a tough situation. So glad your CT scan is looking good .. do you get regular check ups for it? Again, thank you for jumping in! Hugs! Katherine
@irene5, thank you Irene, actually he does fairly well with his CLL. The FDA approved a new chemotherapy about 2 years ago called IMBRUVICA that his Oncologist has said is not a "cure" but is "life sustaining". This was of course not available for your poor cousin .. he was so lucky to have you by his side. Thank you for your kind words. Hugs to you! Katherine
Katherine
I go to Mayo Rochester to Dr Dulohery on a regular basis. She has me on the big 3 MWF now as my cavitary MAC is looking better. I don't have extensive Bronchiecstasis, mostly in my upper right lung. I'm seeing a speech pathologist to see if swallowing issues might have something to do with my constant throat clearing and pflegm. I was tested at Mayo and do not have GERD, so not sure why I have an ongoing cough and post nasal stuff.
We're traveling for over one month to Europe and very excited and slightly nervous. Happy to hear others on the Forum venture out. It gives me confidence I'll be fine. I have antibiotics from Mayo to overlay my others should I get a respiratory bug, but I'll wash hands frequently and not overdue. Gotta do the fun stuff in life. This short and sweet life! ( with a few hiccups along the way to help us appreciate the good times!)
Best, Kay S
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2 Reactions@kaystrand, Kay, I am SO excited for you! My husband and I have traveled all over the world by auto .. it is SUCH an adventure!
Question: for the "constant throat clearing and phlegm" .. has anyone prescribed .. from my File Cabinet:
MAYO NASAL SPRAY nasal spray I get from Mayo is what is called a "compound prescription" meaning the pharmacist actually prepares it themselves. If you doctor prescribes it .. you have to ask a pharmacy: "Are you a compound pharmacy? Do you know of one and what is their phone number?" Then you can have the prescription transferred to that compound pharmacy from where your doctor faxed the prescription.
The nasal spray must be kept refrigerated and is:
Mometasone 0.033%, Ipratropium 0.02%, Diphenhydramine 0.033% Kit
Problem .. when I tried to get my prescription refilled at a local pharmacy they declined .. said they did not have the "kit" which is essentially the bottle and nasal spray portion .. not the ingredients. So this may be the issue you run into.
Kay, personally I just get it from the Mayo Clinic, Rochester Subway Pharmacy and they mail it to my home. I use it two times a day .. 2 sprays. It is supposed to be refrigerated .. but if you are traveling .. most places you stay will have a mini frig .. you could take a traveling wallet .. this was recommended for my husband's insulin .. you could "pick" out the threads between so it is ONE solid pocket.
https://smile.amazon.com/Cooling-Wallets-Insulin-Between-Refrigeration/dp/B000C15C8M/ref=pd_sbs_121_3?_encoding=UTF8&pd_rd_i=B000C15C8M&pd_rd_r=MQVZVDEG6WWKTH4BXY8F&pd_rd_w=3hyf3&pd_rd_wg=7fDea&psc=1&refRID=MQVZVDEG6WWKTH4BXY8F
Kay, when I travel .. I ALWAYS take Halo and at the first hint of sniffles I take 4 sprays .. 3-4 times a day for 2-3 days .. doing this I rarely get a cold when I travel .. I have only been able to find it on Amazon .. here is the link .. I'd get a couple of them at least.
https://smile.amazon.com/Halo-HL00101-Oral-Antiseptic-Citrus/dp/B009240FPK/ref=sr_1_2_s_it?s=hpc&ie=UTF8&qid=1490993699&sr=1-2&keywords=halo+oral+antiseptic+spray
Again Kay, SO happy for you .. have a GREAT time! Hugs! Katherine
Katherine
I have the Mayo spray. Will order Halo. Thanks as always for your help.
Kay s
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1 Reaction@kaystrand, Hi Kay, wonder what is going on then with nasal stuff .. seen a good ENT person at Mayo? I'd really wonder about something going on up there! My husband ended up with an infection in the sinuses that ended up affected the lining of the brain years ago .. frankly when you get back from your trip .. I'd take the time to check it out .. don't want to worry you .. but better safe than sorry.
You might check out that travel case I mentioned .. really keeps things cool. I tossed my nasal spray in there with my husband's insulin when we traveled .. I was told that because the spray has water (even sterile) I needed to keep it refrigerated and throw away after 7 days. Be happy and have fun .. YEAH! Katherine
KatherineBeen to 2 ENTs and had a scan of sinuses and nose etc. I have very clear sinuses but my nasal passages are always inflamed. Too much Mayo spray makes my nose bleed. So Dulohery is having me do the swallowing test. There is a surgery for my runny nose but no guarantee on it at all. The ENT sort of is discouraging me actually. I guess I can live with this with all I read, I'm not complaining. I'm trying to get off the worry train. MAC works on a persons head a bit....yes we have to advocate for ourselves and I do to a point. Thanks for the good wishes for our trip! I'll be off all my devices for 5 weeks. A real holiday......Take care!!LaterKay S
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1 Reaction@kaystrand, Kay, that sounds just GREAT! You go .. LIVE and be happy! Hugs to you! Katherine
Great I took the meds last night and got up to pee a few times but otherwise had a good night!! Woke up and am okay this morning!! Gonna eat and have a great day!! Thanks for the advice Kathi!! It's beautiful here in North Myrtle Beach S.C. ❤️
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