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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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FROM MY FILE CABINET .. From Colleen:
MAYO CLINIC CONNECT-REMOVE FROM Hello
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That may have been me, Linda, that mentioned the sensitivity to odors. I
had to have my husband get rid of his Tide laundry detergent and the Downey. We
both use the scent free detergent. Those two brands used to tear me up! Another
thing that will cause my lungs to spasm is the air fresheners, any and all of
them! Especially the plug-ins. All three things I have listed contain proven
carcinagens.It has something to do with the fragrancing.
O.K. thank you for the correction. Sayyyy........I'd like to go to that one
too. ; )
Please keep us posted.
Hi Angie,
How are you doing today? Have you discussed this
with your dr? Do you have a GOOD dr? Try asking your doctor about inhaled
antibiotics. Where are you going for treatment?
- Terri M.
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1 Reaction@tfritschy, @lindaaz, and @afcardieri , welcome to our Connect Community! Please feel
free to ask questions and share your experiences. This is a great support forum
with many caring individuals. - Terri M.
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1 ReactionI love to garden, my hobby. So does this mean I should not? I do it all, rake, dig it the dirt and plant. I was going to ask if it was ok to garden when I was at the Mayo but forgot. Maybe I should check.
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1 Reaction@barbjh .. do you have a first name? More personal! It is merely MY opinion .. but if it was me .. there is not a doubt in my mind I definitely WOULD wear a mask. After what I have been through .. no way would I want yet another mycobacterium OR yet another bacteria to battle in my lungs! I find the Cambridge Mask pretty comfy to breathe in and ok to wash. Each person must make their own health decisions .. just my opinion. Hugs to all! Katherine
FROM MY FILE CABINET:
HOT TUB AND SHOWERS .. SOIL -SOURCES OF MAC https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3949190/ Given these characteristics of NTM it is not surprising that drinking water, household plumbing, peat rich soils, brackish marshes, and drainage water are reservoirs of NTM (9). Water systems in hospitals, hemodialysis centers, and dental offices have particularly high rates of mycobacterium colonization (10). When sampling a potential source for NTM colonization, biofilms should be included in the sampled specimens given the organisms’ predilection for biofilm adherence. aerosolization of droplets small enough to enter the alveoli is the likely route of acquisition of pulmonary disease. Bathroom showers have been implicated as a primary source of exposure to aerosolized NTM (36). Households with water heater temperatures ≤50 °C are more likely to demonstrate colonization of their water supply with NTM than those with water heater temperature ≥55 °C (37). Potting soils, particularly those enriched with peat, have a high concentration of NTM and dust generated from soil may produce particles small enough particles to enter the alveoli (38). However, a case controlled cohort study by Dirac et al. looked at “aerosol-generating activities in the home and found that the only activity predictive of the development of NTM lung disease was the use of a spray bottle for watering plants (39).
OR http://emedicine.medscape.com/article/222664-overview MAC is ubiquitous in distribution. It has been isolated from fresh water and salt water worldwide. The common environmental sources of MAC include the following: Aerosolized water Piped hot water systems (including household and hospital water supplies) Bathrooms [1] House dust Soil
OR On hot tubs and showers: the THEORY .. no prove research is that when the water is "aerosolized" it is breathed into the lungs .. if there is sputum in the lungs .. the sputum becomes a breeding ground for the mycobacterium as the "aerosolized" water gets into our lungs.
Same with soil .. as you garden .. as the soil is disturbed it becomes "aerosolized" .. same process in theory,
MASK -TRAVEL OR GARDENING I was traveling to a VERY air polluted area .. I did a LOT of research and found there was a BETTER mask than the 3M N95 mask .. PLUS could looked kinda cute! I found it decent to breath with. I travel with it always! Good info at: https://cambridgemask.com/technology/ (Our filter material is comprised of a series of activated carbon filaments, each about 2,000 nanometres in diameter. The pores in each filament are 25 times smaller than those in standard carbon materials, and therefore more powerful. This means that bacteria and viruses are drawn to the surface from further away. The high number of filaments – spun into a yarn and then woven into cloth – concentrate and intensify the Van der Waal forces, including powerful electrostatic charges. This way, not only are molecules such as endotoxins quickly absorbed into the pores from a much wider area, but these forces also attract and immobilise much larger particles including bacteria, which often have a negatively charged membrane. The material traps the bacteria and draws out the gel-like cytoplasm inside – killing it and preventing infection.)
Purchased at: https://www.amazon.com/gp/product/B01KK2NSVK/ref=as_li_qf_sp_asin_il_tl?ie=UTF8&tag=cambridgemask-20&camp=1789&creative=9325&linkCode=as2&creativeASIN=B01KK2NSVK&linkId=f4be07a257cb28b462c1db1dc0c037ab
CLEANING Washing Instructions – can I wash the mask? Yes, you can CAREFULLY hand wash it with some mild soap. Note that the masks are washable, but cleaning them only removes dirt not pollution trapped inside the filter. So the mask needs to be replaced after extended use to ensure proper filtration.
SIZING We have found that the best way to choose the mask is by weight. MEDIUM: 33 – 64kg= 73 to 141#
*REPLACMENT TIME How long can I use it? Cambridge Masks™ are non-disposable, meaning that you can use them for potentially hundreds of hours. The length of time they are suitable for depends on how polluted the environment is when you use it. A table is provided below, but a “rule of thumb” (a guideline) is that you can use the masks on a regular basis for 3-6 months before it needs replacing. Note that the masks are washable, but cleaning them only removes dirt not pollution trapped inside the filter. So the mask needs to be replaced after extended use to ensure proper filtration.
NOTE: Beyond Index Over 500 Visibility below 600 meters. Fog-like clouds of pollution clearly visible even in bright sunlight. WILL LAST 90 hours Hope you find this helpful! Katherine
**ALSO use especially in auto or crowded areas like theatres etc: Air Supply Mini-Mate Personal Ionic Air Purifier-- Air Supply Mini-Mate Personal Ionic Air Purifier--Black https://smile.amazon.com/gp/product/B000B6CMZ4/ref=oh_aui_search_detailpage?ie=UTF8&psc=1
Hi Barb, I just do minimal gardening to be on the safe side and anything
else that might release spores, mold, bacteria, etc. From what I
learned at the recent conference, there are different species of MAC by
region. MAC is in soil, air and water. Because of that everybody has
it in their lungs. Most people have good immune systems to keep it from
colonizing. However, those of us on this site have issues with it. You can call
your doctor's nurse and ask her about it. She will likely have your doctor call
you. I have had good luck with my dr at Mayo getting back to me when I have
called with questions. Let us know what you find out .
- Terri M.
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2 ReactionsThank you Katherine for the push to be better about masks. Love & Hugs
to you - Terri M.
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2 Reactions