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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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I will not drink while on the meds. Easier to go by the rules.
-- Barb S
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1 ReactionKatherine - where do you get your water tested?
Thanks - Barb S
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1 Reaction@barbjh, I'm with you on the gardening ... I love flowers and flowering shrubs.
At the NTM Conference in May, someone asked about gardening and whether to wear a mask. When the video of the conference is available, I hope you listen to it; I sure will be, to refresh my memory. If I recall correctly, the doctors who addressed this may not have agreed about wearing a mask; they played down the necessity; however, one doctor said if a patient worked in a nursery they probably should wear a mask. I think she said you should wet the mask first in water before putting it on. If you feel more comfortable wearing one, then do it. I have a mask that I've worn a few times this summer when I'm digging in the dirt (in my back yard - I really don't want to go over-board and alarm my neighbors! At least not until there is some conclusive strong recommendation to wear one with what I'm doing.)
Best wishes.
Thx so much, Katherine and Everyone for your wealth of info and encouragement. Yes, MAC is everywhere, in the air, water, soil, surfaces, etc. We've got to live without excess worrying about it. I am the only person in the family diagnosed with MAC last January, up until then I never heard of it. After the initial shock and on treatment, I am now feeling alone. Thank goodness for All of you here, I do not feel so depressed and isolated anymore. Hugs and Blessings-Filis
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1 Reaction@bschaper2, upon being diagnosed with NTM, my pulmonologist said I could take the 3 drugs however I wanted, but to find the best way for myself and be consistent with when I take them. He then told me about several of his patients with NTM and their experiences with taking the 3 drugs. I was to find what worked best for me.
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1 Reaction@katemn Thanks Katherine. This really is a great community. It would be great to really get to meet each other.
You are right about being your own advocate and gaining as much knowledge as possible. I was a migraine sufferer for many years (unfortunately my daughter inherited that) and I read everything I could get my hands on about migraine. That was back before the internet, so it was more difficult. One of the things I read said that people who have migraines often are more knowledgeable about them than most doctors, unless the doctor is a migraine specialist. I believe that and I am sure that is true of any medical condition. That is probably why it took so long to diagnose my cirrhosis. As I look back, knowing what I know now, I had too many signs to not be diagnosed, I was just not jaundiced.
JK
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1 Reaction@katemn Katherine, I feel the same. Theoretically I understand people with MAC need to be careful about the water, the soil and a bunch of other things that we encounter on daily basis. But we can't lock ourselves up in a cage and surround ourselves with everything that is MAC-proof. That is not living. Like you said, "... some prevention is good, but we have to live".
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3 ReactionsI was told also that I had asthma, cant help but think that the MAC is causing it in some way.
Heathery..The gold standard test to know if u have asthma is the Methocholine Challenge...not complicated tdrell
@bschaper2, Barb, I have just ASSUMED all home water has mycobacterium .. cannot find an actual test for home testing. Anyone else want to jump in? Hugs! Katherine
But from my File Cabinet:
https://smile.amazon.com/gp/product/B00JWTRA5I/ref=ox_sc_act_title_12?ie=UTF8&psc=1&smid=A35MWDCY6SWWSF
FILTERATION OF HOME WATER SYSTEMS Hello Katherine, Again, apologize for the delayed response. Let me share with you information received from a colleague, Dr. Joseph Falkinham from Virginia Tech University. He is one of the leading experts in the country and world, studying these very issues for many years. I might add that there is no definitive data as to whether any of these home water modifications of exposure will impact the clinical course of pulmonary NTM patients, and if so to what extent. Likewise, it is equally unclear as to what impact these modifications would have on minimizing risk of development of pulmonary NTM disease if changes are made prior to development of disease. Please let me know if additional information is needed or if I can clarify further.
Regards,
Dr. A
(from Dr. Falkinham)
(1) Even with installation of a 0.2 micron meter pore size filter, the house will always have NTM as they are in the pipe biofilms. They grow in the biofilm on nutrients in the filtered water and inoculate the water.
(2) As an alternative, I suggest filters on just those water sources where aerosols can be generated; namely a shower and a water tap in the bathroom...maybe even in the kitchen. Those places should only be used by the NTM patient, not everyone, as the filters are expensive and need regular replacement.
(3) The 0.2 micron filters clog, so it is important to pre-filter the water (1-5 micrometer filters). The larger pore filters are less expensive than the expensive 0.2 micro meter pore size filters.
Content above is information provided by Aksamit, Timothy R., M.D. on 03-Feb-2017 14:09
@pamelasc1, Pamela I think you hit the nail on the head. You would have to CONSTANTLY have the water tested for mycobacterium because as Dr. Aksamit said .. my kitchen special filtration system ONLY has 0.2 micron filtered water going through it .. but he said the faucet itself would STILL retain SOME moisture after use/shut off .. developing in biofilm in the faucet .. developing in mycobacterium!! (1. iSpring CU-A4 - US Legendary - 4-Stage 0.1 Micron Ultra-Filtration Water Filtration System with No-pressure Chrome Faucet https://smile.amazon.com/iSpring-CU-A4-Ultra-Filtration-Filtration-No-pressure/dp/B009AEJWZG/ref=cm_cd_al_qh_dp_t 2.Kingston Brass Concord KS8198DL+ Single Handle Lead-Free Water Filtration Faucet, Satin Nickel https://smile.amazon.com/Kingston-Brass-KS8198DL-Lead-Free-Filtration/dp/B004KPL1BS/ref=cm_cr_arp_d_product_top?ie=UTF8 )