1. < MAC & Bronchiectasis

(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

Jennifer | @megan123 | Aug 3, 2018
In reply to @gardenernj "I started on the Big 3 about three weeks ago and am actually doing better than..." + (show)
@gardenernj

I started on the Big 3 about three weeks ago and am actually doing better than I expected. Fatigue, nausea and headaches are my worst side effects. Can anyone advise when the headaches go away? Also, how would I go about finding a support group in New Jersey or even NYC? Thanks in advance for any advice.

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Gardenernj@. I have been on the big 3 for app 4 months..headaches went away after app 2 months..fatigue has been right from the beginning...nap or my down every afternoon around 3:00 or so...

REPLY
Jo Ann K | @jkiemen | Aug 3, 2018
In reply to @gardenernj "I started on the Big 3 about three weeks ago and am actually doing better than..." + (show)
@gardenernj

I started on the Big 3 about three weeks ago and am actually doing better than I expected. Fatigue, nausea and headaches are my worst side effects. Can anyone advise when the headaches go away? Also, how would I go about finding a support group in New Jersey or even NYC? Thanks in advance for any advice.

Jump to this post

@gardenernj @megan123 Yes I could take a nap in the late afternoon after everyone else leaves from work. I can't sit too long or I get very sleepy. This mostly started when I started the Big 3.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 3, 2018
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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@loveblue Hi! When is the next quarterly meeting?

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jaejack | @jaejack | Aug 3, 2018
In reply to @alleycatkate "Hello...Came across an article on Saline as an inhospitable host to MAC. This appears to me..." + (show)
@alleycatkate

Hello...Came across an article on Saline as an inhospitable host to MAC. This appears to me to support what Terri @windwalker talks about when she suggests (or her Dr suggests) that all with MAC should be nebulizing saline. I also interpret it to support her suggestion of a salinity solution of 7% (and that a lower percentage of saline is not effective on M Avium. (minimum of 6% needed) Wish I had medical training and could navigate these articles better. It is published by National Institute of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ Would appreciate any input on this. Thanks. Kate

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Marilyns, I am in the same place you are. An new to the group .... and disease. I think this group will be most helpful! ❤️

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jaejack | @jaejack | Aug 3, 2018
In reply to @windwalker "@mary1944 More to keep in mind .. Basically everyone experiments with what med schedule works best..." + (show)
@windwalker

@mary1944 More to keep in mind .. Basically everyone experiments with what med schedule works best for them:
1. PROBIOTIC: take probiotic half hour before breakfast on an empty stomach (when on meds I also took a 2nd probiotic in the evening on an empty stomach)
2. RIFAMPIN: Take this medicine on an empty stomach .. OR either 1 hour before or 2 hours after food NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds! (Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Be aware it can cause: Reddish discoloration of Stool or Urine etc.) FOR ME Rifampin caused sleep disturbance so I tried to take it FIRST THING in the morning!
3. ETHAMBUTOL AND AZITHROMYCIN: BEST with an empty stomach! .. BUT either 1 hour before, or two hours after meals! (taking BOTH at one time gives “greater punch!” (NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds!) * take with a LIGHT snack at most.

ANTIBIOTICS .. SCHEDULING ..DIFFERENT MEMBERS
TIP: REQUEST 90 DAY PRESCRIPTIONS FOR ALL YOUR ANTIBIOTICS .. THEN YOU HAVE JUST ONE CO PAY.

BEST
Here from one of our members is what I think is REALLY good advice on starting the antibiotics .. hope it helps you! Keep in mind .. YOU may NOT feel “lousy” the first month .. each of our bodies are DIFFERENT .. each of our bodies will react differently .. but the advice I just excellent!

SCHEDULING ANTIBIOTICS From Member @pamelasc1, I began the 3 pill regimen. I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put a minimum of 2 hours between eating dinner and taking the pills. Every day I take a probiotic to help the gut – the antibiotics wreak havoc with the gut. This can help with nausea – I take my probiotic with breakfast or lunch – do not take it late in the day. I use Ultra Jarro-Dophilus – 50 billion per capsule – will find in the frig at any health food store – I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side effects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts.

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Thanks to all of you for the advice. I’m new and must say didn’t tolerate taking the Big 3 all at once the first 2 weeks. The Drs have moved me to just take the Rifampin for now and hopefully I can add the other 2 later. Thanks SO much for these post!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 4, 2018
In reply to @windwalker "@mary1944 More to keep in mind .. Basically everyone experiments with what med schedule works best..." + (show)
@windwalker

@mary1944 More to keep in mind .. Basically everyone experiments with what med schedule works best for them:
1. PROBIOTIC: take probiotic half hour before breakfast on an empty stomach (when on meds I also took a 2nd probiotic in the evening on an empty stomach)
2. RIFAMPIN: Take this medicine on an empty stomach .. OR either 1 hour before or 2 hours after food NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds! (Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Be aware it can cause: Reddish discoloration of Stool or Urine etc.) FOR ME Rifampin caused sleep disturbance so I tried to take it FIRST THING in the morning!
3. ETHAMBUTOL AND AZITHROMYCIN: BEST with an empty stomach! .. BUT either 1 hour before, or two hours after meals! (taking BOTH at one time gives “greater punch!” (NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds!) * take with a LIGHT snack at most.

ANTIBIOTICS .. SCHEDULING ..DIFFERENT MEMBERS
TIP: REQUEST 90 DAY PRESCRIPTIONS FOR ALL YOUR ANTIBIOTICS .. THEN YOU HAVE JUST ONE CO PAY.

BEST
Here from one of our members is what I think is REALLY good advice on starting the antibiotics .. hope it helps you! Keep in mind .. YOU may NOT feel “lousy” the first month .. each of our bodies are DIFFERENT .. each of our bodies will react differently .. but the advice I just excellent!

SCHEDULING ANTIBIOTICS From Member @pamelasc1, I began the 3 pill regimen. I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put a minimum of 2 hours between eating dinner and taking the pills. Every day I take a probiotic to help the gut – the antibiotics wreak havoc with the gut. This can help with nausea – I take my probiotic with breakfast or lunch – do not take it late in the day. I use Ultra Jarro-Dophilus – 50 billion per capsule – will find in the frig at any health food store – I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side effects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts.

Jump to this post

@jaejack, FYI about starting on the Big 3; many pulmonologists will start you on each drug separately a week apart. That way, they can pinpoint which drug is giving a patient an adverse reaction (if any). From what I have heard, rifampon is the toughest of the three to tolerate. Many on this site suggest taking it on an empty stomach in the morning. Also heard that the side-effects subside after a few weeks for some people. I hope you a med schedule that works for you.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 4, 2018
In reply to @gardenernj "I started on the Big 3 about three weeks ago and am actually doing better than..." + (show)
@gardenernj

I started on the Big 3 about three weeks ago and am actually doing better than I expected. Fatigue, nausea and headaches are my worst side effects. Can anyone advise when the headaches go away? Also, how would I go about finding a support group in New Jersey or even NYC? Thanks in advance for any advice.

Jump to this post

@megan123, Hello J! 3:00 -4:00 is my lay-down time too. Then up at 5:00. Have 1/2 cup coffee to get energy together to make dinner.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 4, 2018
In reply to @gardenernj "I started on the Big 3 about three weeks ago and am actually doing better than..." + (show)
@gardenernj

I started on the Big 3 about three weeks ago and am actually doing better than I expected. Fatigue, nausea and headaches are my worst side effects. Can anyone advise when the headaches go away? Also, how would I go about finding a support group in New Jersey or even NYC? Thanks in advance for any advice.

Jump to this post

@gardenernj, Hi there. I am glad that you are feeling some improvement after starting your meds. If you join a local support group; I hope you will still check in with us and give us updates on how you are doing; especially when you are recovered. We could all use a beacon of hope. As for a local support group, I know that http://www.ntminfo.org has support groups by state. You can go on their site and check it out.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 4, 2018
In reply to @alleycatkate "@Windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in..." + (show)
@alleycatkate

@windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in other countries that appear to be effective against MAC and TB. You need to click on the PDF to view the entire article: https://www.tandfonline.com/doi/abs/10.1076/phbi.35.2.77.13284 . It is somewhat extensive but if you look at the chart midway you can see the herbs that work on MAC. The one that I am most interested in and I have ordered is Oplopanax horridus (Devil's Club) . There are many corroborating articles written...https://www.ncbi.nlm.nih.gov/pubmed/9392889 and http://kylenorton.healthblogs.org/2011/11/27/the-world-most-popular-herbs-devils-club-oplopanax-horridus-health-benefits-and-side-effects/
Anyway...I am very excited...It is a readily available plant tincture and very reasonable. I put this info out there as an alternative to those that cannot tolerate the antibiotics or for people, like myself, that refuse them. I will keep you posted. Oh...Just did hear from Mayo today that they will NOT work with my insurance so I need to wait till January and switch insurance. Hope you are doing well and feeling good. Thanks for all your hard work. xxoo Kathy

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@alleycatkate, Hi Kathy, always a pleasure to read your posts. The Devils Club (oplopanax) sounds very intriguing. Did you order some of that? Other natural herbal remedies to check out are Mullein, Scullcap, oil of oregano. And also Ayurvedic use of tulsi and dashamula.

REPLY
hydrang3a | @hydrang3a | Aug 4, 2018
In reply to @alleycatkate "@Windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in..." + (show)
@alleycatkate

@windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in other countries that appear to be effective against MAC and TB. You need to click on the PDF to view the entire article: https://www.tandfonline.com/doi/abs/10.1076/phbi.35.2.77.13284 . It is somewhat extensive but if you look at the chart midway you can see the herbs that work on MAC. The one that I am most interested in and I have ordered is Oplopanax horridus (Devil's Club) . There are many corroborating articles written...https://www.ncbi.nlm.nih.gov/pubmed/9392889 and http://kylenorton.healthblogs.org/2011/11/27/the-world-most-popular-herbs-devils-club-oplopanax-horridus-health-benefits-and-side-effects/
Anyway...I am very excited...It is a readily available plant tincture and very reasonable. I put this info out there as an alternative to those that cannot tolerate the antibiotics or for people, like myself, that refuse them. I will keep you posted. Oh...Just did hear from Mayo today that they will NOT work with my insurance so I need to wait till January and switch insurance. Hope you are doing well and feeling good. Thanks for all your hard work. xxoo Kathy

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I have been on the big 3 for almost two months plus infusions of Amikacin. For the first month I was on daily infusions of Invanz for a large lung abscess believed to be created by MAC. My biggest complaint now besides fatigue and weakness is Vertigo....has anyone else been dizzy? I fainted coming out of a barium swallow given to me to diagnos GERD which apparently I also have in addition to the MAC, Bronchietusis and the Absess. Interested in knowing if anyone else is dizzy and carrying around what feels like a very foggy thick head. I’m going to Denver next month and hope they will get to the bottom of this.

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