(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.

heathert | @heathert | Apr 22, 2020

In reply to @anniepie "@heathert Virtual hugs x" + (show)

Virtual hugs to you to annie

america | @america | Apr 23, 2020

In reply to @windwalker "@pamelasc1 Hi Pam! I am glad your daughter is bringing you your groceries. How are you..." + (show)

Hi everyone, It’s a blessing to have help with our shopping. I also have my daughters that brings all my needs from meds to groceries and also some delicious home cooked meals. I think we live in a great country and our leaders are doing all they can to help us. It’s a horrible virus and people that keep the rules would help us all. I hope we can find a solution for this soon. I have a question... has anyone used plaquenil for RA? Please let me know if anyone has crushed it because they can’t swallow? Thanks Rita.

Helen L/Orlando | @hsletter | Apr 23, 2020

I found Ridgecrest's ClearLung Extra Strength on ThriveMarket.com for about $30.00 Points are accumulated for orders made so I only paid $23.00. It's a great site - check it out!

boomerexpert | @boomerexpert | Apr 23, 2020

In reply to @america "Hi everyone, It’s a blessing to have help with our shopping. I also have my daughters..." + (show)

I did for a short period...had to stop as it made me queezy...recommend you ask your pharmacist or physician re: crushing it...

Sue, Volunteer Mentor | @sueinmn | Apr 23, 2020

In reply to @america "Hi everyone, It’s a blessing to have help with our shopping. I also have my daughters..." + (show)

@america My mother used it. If I remember correctly, directions clearly said it needed to be swallowed whole. I could not even cut it in half to make it easier for her.
Sue

lorifilipek | @lorifilipek | Apr 23, 2020

In reply to @america "Hi everyone, It’s a blessing to have help with our shopping. I also have my daughters..." + (show)

@america According to this site https://www.verywellhealth.com/plaquenil-10-things-you-should-know-190228 "Swallow the pills with liquid. Do not chew or crush Plaquenil tablets." The "Do not chew or crush" was shown in bold. Here's an article on the pill: https://www.cnn.com/2020/04/21/health/hydroxychloroquine-veterans-study/index.html" Coronavirus patients taking hydroxychloroquine, a treatment touted by President Trump, were no less likely to need mechanical ventilation and had higher deaths rates compared to those who did not take the drug, according to a study of hundreds of patients at US Veterans Health Administration medical centers."

america | @america | Apr 23, 2020

In reply to @sueinmn "@america My mother used it. If I remember correctly, directions clearly said it needed to be..." + (show)

Hi Sue, my RA doctor said I should crush it and I did for a month plus two weeks. But my pains got worse and I felt like I could not breathe. I tried calling but could not reach anyone at the office so I call my pharmacist and he told me I am not supposed to crush it. I stopped it yesterday but I still have a lot of pain. I am totally tired of some of the doctors we trust let us down like this. I always do my research on my meds but I looked an all the horrible side effects and thought I need to try it because of the disease but I missed the crushing part. Thanks everyone. I’m still doing good and grateful that what whenever this virus is over and I’ll go to Mayo and hope Still be negative!!
Stay well all and let’s hope and pray we’ll soon see the rainbow! Rita

Terri Martin, Volunteer Mentor | @windwalker | Apr 24, 2020

@heathert Hi Heather! I have said this before, but I will say it again. THANK YOU for staying with our group! Although you have been mac-free for awhile now; you still remain here as a beacon of hope for those still struggling to beat their infections. One day; I hope to visit NZ and meet you in person! Stay safe my friend!

heathert | @heathert | Apr 24, 2020

@windwalker. Thanks Terri but it is my pleasure, I remember the early days and having so many questions and the ladies on this site helped no end. I would love to see you in New Zealand some time! Take care Heather