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!

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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 Support Group.

Katherine, Alumni Mentor | @katemn | Jul 28, 2016
In reply to @heathert "I agree that if the scientists had some money to put into this they may find..." + (show)
@heathert

I agree that if the scientists had some money to put into this they may find the answer quite soon, there is enough of us with this for the pharmaceutical companies to look into this a bit more. Wish I knew how to get this ball rolling. My doc said there is no new medicines in the pipeline just rehashing of the old antibiotic meds. We need new antibiotics to be produced, and not just for MAC, it has been in our news alot.

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Thanks predictable! Just prior to my travels I saw my internist to renew my travel prescriptions .. I always travel with various prescriptions when I am out of the country. She spoke of doctor's current concern about "supper bugs" that have become resistant to most antibiotics because doctors are over prescribing antibiotics just to keep patients happy .. frankly.

This would certainly give the medical community another arrow in their quiver for those "super bugs" .. even if not for any of our particular diseases. Good news no matter! Hope it comes about in a shorter time than two years!

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Katherine, Alumni Mentor | @katemn | Jul 28, 2016
In reply to @katemn "Sorry Folks, but the reality is that BIG money has chased cancer for years without a..." + (show)
@katemn

Sorry Folks, but the reality is that BIG money has chased cancer for years without a cure .. fund raisers .. an incredible amount of money for research. The pharmaceutical companies have absolutely NO interest in the tiny population of MAC/Mai patients .. that is our reality. We are an "orphan disease" which would yield zero profits in terms of what they are looking for. THAT is our truth. So am I going to beat my head against the wall with the small amount of energy I have .. NOPE!

For myself I know that for my best health and recovery it is important that I " put ALL my energy into what I can control .. and let go of what I cannot control". To me that means focusing on putting my energy into living my life as happily and healthily as I possibly can each and every day .. giving thanks for my blessings each day .. and NOT focusing on what I CANNOT control .. which is the outside world of big business .. pharmaceutical companies that only care about profits etc. To me peace and serenity are primary in my life .. AND a caring supportive environment on this Forum. Let's all focus on the positive in our lives .. remembering those around us who have it SO much worse! Let's count our blessings each and every day. Go in peace. Katherine

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Janet, I think you know my heart by now .. if ever I have NOT made you feel safe or feel good .. it was not my intent. I am very glad you spoke from your heart .. and I am hearing you. Katherine

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Katherine, Alumni Mentor | @katemn | Jul 28, 2016
In reply to @sophie1019 "Thanks for your response. I notice that of I take the meds one at a time,..." + (show)
@sophie1019

Thanks for your response. I notice that of I take the meds one at a time, maybe 10 to 15 minutes apart ( per doctor's order)<br>with a piece of dry toast, I have no stomach issues at all. Maybe that will help. I also have an eye doctor's appointment on july 21 to get my eyes checked. I was also told to download a colorblindness app on my phone to keep my colorblindness in check. I have only been on the meds for approximately 3 weeks, got a long way to go.<br>

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Thank you, Sophie! That is GREAT information to add to our Forum's "file cabinet" of knowledge for current and future seekers of knowledge on our shared journey! Don't forget that these pages are read by all the new people who are just beginning the journey .. who are just thirsting for knowledge on just how to handle all the little details of this journey. Everything we can add that can help them on their way is wonderful!

This Forum truly IS like a MAI/MAC "FILE CABINET" on how to deal with the disease. The tips and help we have found that help us .. will help those In the future! It is US .. "playing it forward"! Keep up the good work! Hugs to all! Katherine

Sophie, the only thing I would add is: don't drive yourself crazy with "testing frequently". It I like weighing yourself every day when on a diet .. will make yourself crazy! I would ask your doctor .. but my guess is that if you choose a day of the week and check weekly .. that would be sufficient! Due Diligence but not becoming your disease!

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Sophie | @sophie1019 | Jul 29, 2016
In reply to @sophie1019 "Thanks for your response. I notice that of I take the meds one at a time,..." + (show)
@sophie1019

Thanks for your response. I notice that of I take the meds one at a time, maybe 10 to 15 minutes apart ( per doctor's order)<br>with a piece of dry toast, I have no stomach issues at all. Maybe that will help. I also have an eye doctor's appointment on july 21 to get my eyes checked. I was also told to download a colorblindness app on my phone to keep my colorblindness in check. I have only been on the meds for approximately 3 weeks, got a long way to go.<br>

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Thanks for reminding me not to let the virus define me but let me define the virus. And for those out there who are just starting this journey, lay your hands on your body and ask God to heal whatever ails you. God can heal and he will answer prayer. I feel great. One of my friends told me yesterday, "you look great". I feel great also. I exercise regularly, I changed my diet, and I PRAY often...... and I will continue to prayer for those, who like me are just starting out on this our journey and that we will be at peace with whatever decision we make about our health and life. Have a good morning.......

REPLY
Martin Jensen, Volunteer Mentor | @predictable | Jul 29, 2016
In reply to @heathert "I agree that if the scientists had some money to put into this they may find..." + (show)
@heathert

I agree that if the scientists had some money to put into this they may find the answer quite soon, there is enough of us with this for the pharmaceutical companies to look into this a bit more. Wish I knew how to get this ball rolling. My doc said there is no new medicines in the pipeline just rehashing of the old antibiotic meds. We need new antibiotics to be produced, and not just for MAC, it has been in our news alot.

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@katemn, The war against antibiotic-resistant bacteria took another big step yesterday. The US and UK announced a partnership to spend $350 million over 5 years in speeding up discovery, development, and distribution of new antibiotics. This comes on the heels of last week's disclosure of a new antibiotic that kills MRSA; it is called "lugdunin" and is formulated naturally in the human nose!

The new partnership includes the US Department of Health and Human Services and the US National Institute of Allergy and Infectious Diseases. For Britain, it is their Wellcome Trust and the AMR Center. Headquarters will be at Boston University's School of Law.

The HHS is working on nine new antibiotics that could move into the market over the next three years. The project plans to work every year on 20 candidate drugs that can defeat resistant bacteria. Here are links to more info:
http://www.bu.edu/today/2016/carb-x/https://www.washingtonpost.com/news/to-your-health/wp/2016/07/28/major-global-partnership-to-speed-antibiotic-development-launched/

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | Jul 29, 2016
In reply to @heathert "I agree that if the scientists had some money to put into this they may find..." + (show)
@heathert

I agree that if the scientists had some money to put into this they may find the answer quite soon, there is enough of us with this for the pharmaceutical companies to look into this a bit more. Wish I knew how to get this ball rolling. My doc said there is no new medicines in the pipeline just rehashing of the old antibiotic meds. We need new antibiotics to be produced, and not just for MAC, it has been in our news alot.

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@predictable, this is such uplifting news for many ... not just those of us with NTM or MAC/MAI. Thanks for sending this info.

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cila | @cila | Jul 29, 2016
In reply to @cila "Sophie, do feel hot at night? I noticed since I started the meds I hot all..." + (show)
@cila

Sophie, do feel hot at night? I noticed since I started the meds I hot all the time especially at night. I take my one meds at 11AM the the two at 1:20PM after I eat lunch. I need to find out about the ear. Do you know if you go to your Primary care Dr. or to the ENT Dr.? Thanks for help

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Thanks Katherine, I will mention it to my Dr. when I see him. how do you take the probiotic with you when you travel when they need to in the fridge? I will be going to visit my son and I'm wondering how can I take them with me. Is it alright to just take what I need and put them in my purse, then when I get to his place put them in the fridge? Thanks for all your help!

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boomerexpert | @boomerexpert | Jul 29, 2016
In reply to @boomerexpert "Actually, if doc's would put some time and effort behind seeking a more efficacious treatment, they..." + (show)
@boomerexpert

Actually, if doc's would put some time and effort behind seeking a more efficacious treatment, they might just find it is that easy...

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Ah, ye of little faith! You confuse avid advocacy with a need for doc's to be God... This is not about the quality of doctoring given what's currently available...it's about changing what's currently available to something that is more effective. I do believe that if each of us asked our physician(s) to call for more research on a better treatment given the significant uptick in infections here in the US alone (not counting the rest of the world) some may take that request further...some may dismiss it (as one person here experienced). But as is the case with anything, you have no chance of getting what you don't ask for. We have all to gain/nothing to lose by engaging our doc's in this needed crusade for change. I've given both my docs (pulmonologist and infectious disease) the link to this forum, so they can learn first hand how minimally effective, and for some, harmful, these meds are - both have said they've not before heard that so many folks are having such problematic responses to the meds.
It's incumbent upon us to advocate for ourselves.

REPLY
boomerexpert | @boomerexpert | Jul 29, 2016
In reply to @boomerexpert "I've done some research on MAC/MAI reinfection, as the notion makes sense to me...if, for instance,..." + (show)
@boomerexpert

I've done some research on MAC/MAI reinfection, as the notion makes sense to me...if, for instance, I was infected via my water (through the mist in the shower, most likely culprit), if I eliminate the bacteria from my water system, at least I can keep the matter from worsening. To that end, I found this from Nat'l Jewish titled "Ways to Reduce Exposure to MAC Bacteria" https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx
I have as a result raised temp of the hot water heater to 135 (the level required to kill the bacteria in the hot water), and am purchasing a whole-house filtration system at the 0.2 microns filtering level they recommend for the complete filtering out of all bacteria, plus a UV cartridge that first keeps the bacteria from reproducing before they are filtered out, total cost (before installation) about $300, to eliminate the bacteria in all household water.
Hope this is helpful to all...

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Call Mark @ 239-357-0038 - he's found an even better filter so tell him Terri sent ya'!

REPLY
heathert | @heathert | Jul 29, 2016
In reply to @heathert "I agree that if the scientists had some money to put into this they may find..." + (show)
@heathert

I agree that if the scientists had some money to put into this they may find the answer quite soon, there is enough of us with this for the pharmaceutical companies to look into this a bit more. Wish I knew how to get this ball rolling. My doc said there is no new medicines in the pipeline just rehashing of the old antibiotic meds. We need new antibiotics to be produced, and not just for MAC, it has been in our news alot.

Jump to this post

wahooo that is great news, superbugs are such a problem in the world today, yay go usa and uk for getting proactive!

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