(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!
Interested in more discussions like this? Go to the MAC & Bronchiectasis group.
Kay, when you respond to a message by email, it is posted to the forum and to all members. This is the strength of community – sharing knowledge of many. You can also click view to see all the messages.
Hello Jill, you are so correct! As you know I am big on “due diligence” and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:
Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine
Hello Kay S, so glad you are finding it helpful! I also found ginger capsules found online or many stores helpful. I also used ginger capsules before taking grandkids to the local amusement park with all it’s crazy rides!
In terms of notes .. I have Word program on my computer and have saved all my notes there under “Health-Lungs-Antibiotic Notes” .. it has really helped as I have wanted to go back for reference .. or to cut and paste to help others! Sending you a Big Hug Kay! Katherine
I also am keeping all of these messages about how and when to take the meds. It will be helpful for when the doc starts me on my regimin, which should be soon.
Does anyone else have difficulty taking the pills due to their size?
COLLENN, I AM CONECTING YOU JUST TO UPDATE MY SONS PROBLEM HE WENT WITH HIA
PRIMARY DR. IN PORTLAND OREGON AND HE AND AN UROLOGIST DECIDED FOR HIM TO
WAIT 4 WEEKS TO HAVE HIS PSA. WE ARE VERY WORRIED
Hi Catherine, I got my lab work last week my vitamin A vitamin B1 are little bit low. The vitamin D is very low and my primary Dr. put me on vitamin D3 10000 IU. My stomach is cramping all the time. Did you or anyone had this problem? Still having problem sleeping. I’m trying to organized my meds when to take them also the probiotic. It says take it in between meals or empty stomach. I will try to do them early b/c I have to take my acid reflux med on empty stomach. Thanks for all your help and I’m so grateful on this forum.
Hello Cila, so sorry this is happening to you .. what a rip! Yes, I do take extra vitamins. I love the phrase “Americans have the most expensive urine in the world!” My attitude is that if my body does not need the additional supplements .. then my body will excrete them in my urine .. BUT I am careful NOT to take more than the recommended for fat soluble like Vitamin A and E etc.
I do take extra Vitamin D3 and A Super B100. For the Vitamin A I would check with your Doctor since it is stored in the fat. I am a great one for googling .. I just did on the cramping .. it came up as: Vitamin D overdose or deficiency might cause stomach cramps.
Why don’t you IMMEDIATELY ask your doctor to lower the dose?! I take 3,000 VD3 without any issues whatsoever .. it may take you a bit longer to get your VD3 to where you need to .. BUT with side effects! Call your Doctor! Frankly sometimes I think they don’t THINK!! We need to be our best advocates .. but don’t tell him/her I told you that! .. And don’t forget with acid reflux to raise the head of your bed 4-5″ .. I’ve given a resource elsewhere on the Forum .. and not to eat prior to bedtime. Sending you a Hug! Katherine
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
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
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