(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!
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 ..
– 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.
Kay S, sorry to not answer sooner .. your message went to my Spam area.
Absolutely, Rifampin did affect my sleep so I took it in the am. Have you tried my ginger capsules idea for nausea? You can get them online or many stores. In terms of stress .. have you tried meditation. Even if you have never done it .. just google it .. YouTube it .. cell phone apps .. you can pick up some great ideas on how to breathe and how to meditate .. do give it a try.
Kay, I so feel for you .. the beginning part is so tough .. it does get easier but so hard in the beginning. I just wish I was there and could give you a hug .. but I am sending you lots of positive energy to help get you through this tough time! Katherine
I did get both ginger capsules and ginger chews. Also boiled ginger to make tea! I was so nauseated yesterday, not sure if anything helped or not. I’ve done Mediation for many years. All my things like that and walking and reading were not working well yesterday. This morning I followed this flower app I have that opens and closes. Long breath in and out. Yes it helps, but good reminder. There are times of intense pain or emotion where I need it most, that is the difficult time to do it.
But today I am a bit better. Amen. It’s been 1 week, but I did a gradual build and the final few days were rough. Patience – I need to remember there is a lot of adjusting my body is doing to some pretty strong drugs!
Katherine, hearing you say the beginning part is tough really helps. I know you did this! Thanks so very much.
Kay S, I am so proud of you .. such GOOD self care! You are just doing EVERYTHING you can think of to take good care of yourself! That flower app sound SO interesting .. I think I am going to look into that for when my husband is driving me crazy! Just keep putting one foot in front of the other .. WOW I’ll be darned .. you actually do get to the end of the journey! Just keep on .. keeping on! Sending you a hug! Katherine
Kay S, just looked for that flower app .. couldn’t find one .. would you mind letting me know the name of it? I have android but usually can get the same app in android or Apple. Thanks! Katherine
Hope you are feeling well. Always try to keep positive thoughts. I made it thri my 1st month, not knowing what to expect but i always keep my head up, keep praying and always always positive thoughts.
Img.ifcdn.com should work. It’s a lotus. I have it on FB.
Kay S, interesting .. when I put in that information into Internet explorer .. it came up: The website declined to show this webpage. I wonder why? I am not that techie. I then clicked on More Information and got:
More information This error (HTTP 403 Forbidden) means that Internet Explorer was able to connect to the website, but it does not have permission to view the webpage.
Maybe someone on the Forum more techie can answer this. No big deal .. but I thought the concept was neat! Thanks to all! Katherine (by the way I am not active on FB .. wanted to put it on my Samsung Tab 2 that I travel with as an Android app)
I could share it with you on Facebook. It is pretty neat. It expands from a dot to a lotus and that’s your inhale and back to dot, that’s your exhale. I am not techie, I had a hard time copying the address to you. 😉
.. no problem Kay .. I just don’t do FB! Hugs to you though! Katherine
My pulmonologist said there is some connection between very low Vitamin D and lung disease but they don’t know the specific connection. A lack of vitamin D is linked to an inability to effectively fight infection.
I had extremely low Vitamin D and have been seeing an endocrinologist for about 5 yrs. Vitamin D is actually a hormone rather than a vitamin and helps with calcium absorption. Per my endo doc, I take 50,000 IU (prescription) of vitamin D each Wed and 5,000IU the other 6 days. No, I don’t have stomach cramps – you should let your doctor know about this. I have blood work every 6 months to look at my Vit D level … in 5 years it is remarkable how my Vit D level has gotten toward the ‘normal’ range.