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.

marilyns | @marilyns | Jul 21, 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

Jump to this post

Thank you.

REPLY
pinktower | @pinktower | Jul 23, 2018

I am wondering if anyone knows what a Good colony count would be. I’ve looked all
Over the internet for the answer. My infectious disease doctor at Mayo called me last week
And said my sputum test grew 9 colonies which was improved from 14 last month. So, would a healthy person grow any colonies? How does 9 look for good results?

REPLY
4 replies
nick52 | @nick52 | Jul 23, 2018
In reply to @pinktower "I am wondering if anyone knows what a Good colony count would be. I’ve looked all..." + (show)
@pinktower

I am wondering if anyone knows what a Good colony count would be. I’ve looked all
Over the internet for the answer. My infectious disease doctor at Mayo called me last week
And said my sputum test grew 9 colonies which was improved from 14 last month. So, would a healthy person grow any colonies? How does 9 look for good results?

Jump to this post

@pinktower my doctor said we human are a good incubator lol.  You may want to take a good good probiotic to give your body good bacteria to fight the bad one.  I take Dr Ohirra’s professional probiotic that I order directly from him on the internet.. Take care!

Nick

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 23, 2018
In reply to @pinktower "I am wondering if anyone knows what a Good colony count would be. I’ve looked all..." + (show)
@pinktower

I am wondering if anyone knows what a Good colony count would be. I’ve looked all
Over the internet for the answer. My infectious disease doctor at Mayo called me last week
And said my sputum test grew 9 colonies which was improved from 14 last month. So, would a healthy person grow any colonies? How does 9 look for good results?

Jump to this post

@pinktower That is an excellent question! The most I had was two colonies, that may be why my dr has not put me on the BIG 3 antibiotics, but rather; 10 day monthly ones to keep it at bay. Hopefully someone else will have an answer to your question. In the meantime; I will hunt for the answer. Are you on antibiotics?

REPLY
pinktower | @pinktower | Jul 23, 2018
In reply to @pinktower "I am wondering if anyone knows what a Good colony count would be. I’ve looked all..." + (show)
@pinktower

I am wondering if anyone knows what a Good colony count would be. I’ve looked all
Over the internet for the answer. My infectious disease doctor at Mayo called me last week
And said my sputum test grew 9 colonies which was improved from 14 last month. So, would a healthy person grow any colonies? How does 9 look for good results?

Jump to this post

Yes. I am on Ethambutol, Rifampin, Clarithromycin. I have severe Crohn’s. I was able to start Remicade in January. I honestly think Remicade has helped my lungs as much as it has helped my Crohn’s. The doctors at Mayo had told me it probably would. Remicade has given me my life back.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 23, 2018
In reply to @pinktower "I am wondering if anyone knows what a Good colony count would be. I’ve looked all..." + (show)
@pinktower

I am wondering if anyone knows what a Good colony count would be. I’ve looked all
Over the internet for the answer. My infectious disease doctor at Mayo called me last week
And said my sputum test grew 9 colonies which was improved from 14 last month. So, would a healthy person grow any colonies? How does 9 look for good results?

Jump to this post

@pinktower That is great news! Hmmmm, maybe the Remicade could be useful in treating mac???? So glad to hear you have relief from the Crohn's. Are you tolerating the three mac meds alright?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 23, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

Jump to this post

@tutti, Hi Lisa! I have been thinking of you and wondering how you are doing. I pray that you are alright. Did the cefoxitin help?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 23, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though...

Jump to this post

@sophie1019 Hi Sophie! I hope you are still doing well per your last update. I have a question: when you were put on the BIG 3 meds 2 1/2 years ago; was it for only mac? Was it mac or mai? Thanks!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 23, 2018
In reply to @pfists "Regarding coliadial silver My naturalpathic Dr put me on it, so he must believe there is..." + (show)
@pfists

Regarding coliadial silver
My naturalpathic Dr put me on it, so he must believe there is some merit. Mayo clinic doctors have sent him patients they haven't been able to help.
I have read up on its use quite a bit on and know it was used extensively before antibiotics and they still use it for burn patients There won't be extensive testing on it unless big pharma figures out how to make it into a drug for profit.
I don't think it alone has helped me or if it helped me at all. I always took a pretty small amount. I do know there was a problem with silver salts and all acumillating and causing blueish color.
But saying all that I wouldn't be comfortable nebulizing at all until research was done on it. There could be contaminates in the solution or something. I'm pretty careful about what I inhale avoid dust, scents smoke. I know that when bacteria comes in contract with silver from what I have read can't exist and it doesn't become resistant to colidal silver.
But I have an open mind and will keep researching.
Thanks for your concern!
Shari

Jump to this post

@pfists and @alleycatkate, Hi ladies. Did either of you catch the PBS NOVA program last weekend called Treasures of the Earth: Metals? Can pull it up on YouTube. It stated that copper kills ALL mycobacteriums and many hospitals were going to start implementing that it be used for frequently touched surfaces. So, this makes me wonder if the uptick in MAC is due to plumbing being changed from copper pipes to plastic (PVC)??? There was also a brief mention that silver is considered a Noble metal. Also a bacteria killer. I will text Dr. Faulkinham and ask him about the copper pipes. Will get back to you after I hear back from him. I hope you both are doing good. hugs!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 23, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

Jump to this post

@joan912 Hi Joan. I hadn't heard from you in awhile. I was wondering how your husband is doing? Any improvement?

REPLY
View MoreView Less
Please sign in or register to post a reply.