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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Hi @128128terry11t,
Here's how to send private message.
1. Click the member's @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.
Hope this helps.
Hi @david1952, ginger and licorise tea was great for me and ginger lollies, worked really well for me also.Good luck.
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1 Reaction@kanaazpereira, and @128128terry11t Terry ..
Just wanted to jump in .. personally I feel that private messaging deprives each and every member of the sharing and caring that is involved. That unless a message is TRULY private .. it robs our Mayo Connect of the very purpose it was designed for .. sharing of information .. good and bad .. fearful or delighted. We are all here on a shared journey .. unless we really DO share our cares and woes .. PLUS our victories and joys as they happen .. PLUS the tips and help as we discover them ..we deprive each other.
This is just my personal thoughts. Hope I am not stepping on any toes. Hugs to all. Katherine
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2 ReactionsThank you for the wonderful guidance for a new member! Katherine
@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to "private message" .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said 'The whole is greater than the sum of its parts.' .
Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.
I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!
As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!
You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine
HI ALL please have a look at the new MAC/MAI group on Mayo https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/?pg=4#post-245273 It is a group for us to discuss how to go about getting the word out about MAC/MAI and hopefully finding a cure, we are a wonderful group of proactive people wanting to find a cure that doesnt involve so many side effects with a cure result, there is many new therapies being tested out there so lets get them tested on MAC/MAI. Please type how you think you may have aquired MAC or something else, and then you will get any updates that come up. This is so very improtant for us, lets do this.
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4 ReactionsHere's a few: Angel mints are known for nausea relief by folks in chemotherapy (very similar to what we go through) http://www.angelmint.com/products-page/; Ginger in candy or other form works well, too http://www.pipingrock.com/crystallized-ginger/crystallized-ginger-60220?prd=D0000J&gclid=Cj0KEQiAwMLDBRDCh_r9sMvQ_88BEiQA6zuAQ494_tQ8JD1hp9IfbhLIvzlF5_sGKRJR_T0ITmzgSCwaAmIv8P8HAQ and finally, I recently purchased the No Mo Nausea wrist band and found it to be useful for minor bouts or prevention https://nomonausea.com/ - they also have essential oils aromatherapy that can be very effective.
Also, a quality probiotic will help ward off nausea from the gig-go.
I too cannot be helped with standard anti-nausea drugs, so hope some or all of these help you!
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1 ReactionIt's called restless leg syndrome and can be brought on by a number of medications...
Hi Linda, sound good .. I also take meds middle of night when I get up .. vitamins a GREAT idea since they interfere with SO many meds!
My only question is your reason for probiotic instead of Rifampin first thing in the morning?
Linda, I am a great note keeper .. just looked back in my notes .. I was on 4 antibiotics plus other meds but will just print out what my schedule was .. maybe it might be of some help to you or others .. hope so! Hugs to all!
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NOTES ON TAKING ANTIBIOTICS
Wake up am probiotic and Rifampin on empty stomach (There is no known interaction between Probiotic and Rifampin in our records.) Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)
Ethambutol and Avelox (sleep disturbance) with Azithromycin: after breakfast with a full glass of water
8 hour before or 4 hours after multi vitamin
Bedtime: take regular p.m. meds & multi vitamin, Evista, Lipitor and pm probiotic.
Separate multi vitamin & probiotics from antibiotics by at least 4 hours if possible)
Also a note I made re: using ginger supplements for nausea: Ginger - scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%. (IDEAS FROM GROUP: ginger and licorice tea was great for me and ginger lollies)
Remember .. All medicines may cause side effects, but many people have no, or minor, side effects.
I was told no .. BUT I always felt that my lungs were weakened by a serious bout with pneumonia in 2003. I was seriously ill for three months .. put on five rounds of antibiotics .. 3 rounds of steroids by my internist. NOT ONCE was my sputum cultured to see which antibiotic was effective against whatever bacteria was affecting me! At that point I was not educated to the point of DEMANDING a culture .. too little to late. I was SO ill! Finally was diagnosed with MAI/MAC in 2007 via a sputum culture.