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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2 months. I was seen at Mayo in Minnesota over a 2 week period. I received so much info from all of the evaluation. I have been overwhelmed & scared & I have been trying to process all of this on my own. It hasn't been going to great so I'm trying to reach out & thought what a better group to talk to than others who are going through similar life experiences. After have a positive MAC culture from my bronchial washings, I was told that I had MAC & need to be treated. Previously (Sept. 2016) they diagnosed me with bronchiectasis. Nothing was seen on my CT scan or X-ray that showed the colonies seen from MAC. One of the big reasons I was going to Mayo was to get an expert opinion from Dr. Askamit. After Dr. Askamit read through my many, many, many records over a course of 10 years, since I first got sick, he concluded that at this time I may have MAC but it should not be treated at this time because it does not appear on a CAT scan. I must tell you that I was shocked by his response as it was completely different than my pulmonologist locally. And to be honest, I seem to have met the criteria to be considered to have MAC & to start treatment. I have many underlying illnesses & it's so hard to sort out what is what. Dr. Aksamit said to wait until it is seen on a CT scan. I have very mixed feelings about this. I am concerned that I should just wait until I become more infected to start treatment. Personally, I'd rather treat it BEFORE it gets worse. I guess I'm the only one who things that. My local pulmonologist changed his mind & decided not to start treatment at this time. Don't get me wrong, I do NOT want take all of these meds that can cause such grief & danger!!! I also don't want to just sit around & wait for things to get worse!!! Am I wrong in thinking that?? I value your opinion. Oh, and I have had the bronchiectasis diagnosis since Sept 2007 based on CT scan but now, when Dr. Askamit looked at a different CT scan, he said he didn't see that. I'm SO confused. I know one thing to be true...I'm in a mess of a health situation with multi system dysfunctional & disease. I am sick every day of my life for 10 years now & without an underlying diaganosis of what disease I have in the lungs. They said I would not make past 2 years but here I am, 10 years later, alive & trying my absolute best to lead as much of a normal life as possible...mostly for my family. I'm back to a point where I am requiring supplemental oxygen again. I had been able to breath on my own for the past 3 years. What changed? We don't know. I go into respiratory failure several times a year resulting in hospitalizations. We still can't answer the question of why my lungs don't convert oxygen from the air I breath in??? Anyway, I apologize for rambling on. I have been so withdrawn & sad, scared & lonely since receiving all of this new information. I also learned I have stage 1 heart failure & other metabolic syndrome that leaves me as the "perfect storm for a cardiac event" as the physician stated it. I ended up at Johns Hopkins a couple weeks ago with an excellent cardiologist who is trying to help my sort things out. My weight is a contributing factor to my alveolib hypoventilation &
We discussed having the stomach sleeve procedure to help me loose weight. There is so much on my mind & I apologize that I just rambeled on without even diving the long note into paragraphs!!! That's just how my mind has been lately. I am in NO way trying to ask for self-pity...I'm just trying to get through my reality of day to day life the best that I can & with the most quality that I can. I'm just so confused right now. Oh, I had another bronch done on Wed. & we sent the washings for culture & this will probably be the ultimate testing to see if the washing show positive for MAC. We won't know for 6 weeks! Again, I welcome your feedback... thanks for taking the time to read this!
Replies to "Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2..."
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.
Thank you Katherine for the push to be better about masks. Love & Hugs
to you - Terri M.
My name is Barb and I have been diagnosed with MAC that at this time they have decided at the Mayo not to treat. I was there in late March and saw Dr Aksamit's assistant. I have seen Dr Aksamit in the past and adore him. My trust level in him is huge. He is also very thorough and explains and goes over everything in detail. After my last visit I emailed him to get clarification on whether I had bronchiectasis. The Chest Ct scan results were without 'bronchiectasis' although bronchial wall thickening and mucous plugging. My pulmonary function tests were good and no changes on my chest X-ray. So I guess that is good news plus I gained back 10 lbs.
It still is hard sometimes because so many doctors and people do not understand this condition. I may not respond to all emails but I feel this group is one place that gets it! My mom had this too and it was never treated and she is 92. But then she never smoked either, unlike me!
@barbjh, Barb, what follow up did Mayo tell you to do .. annual, bi annual, quarterly check ups? If you were diagnosed with MAC .. you DEFINITELY should be having follow up.
From my File Cabinet:
Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the 'puzzle' together based on the results of the sputum culture/Xray/Pulmonary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC in your lungs is STILL negative/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still negative! Those nasty critters DON'T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene! Hope this is helpful. Katherine
There are too many posts with this system you've changed to. The previous way was so much better!! I love this website, but it's taken over the net . Thanks so much for all your work, commadere, and Information and I look forward to changes…
Sent from Yahoo Mail on Android
Hi Barb, I am hoping that you no longer smoke; it exacerbates everything
lung related. Loved hearing that your mom had this and is alive at 92! That is
encouraging!
Amen, Katherine!
Hi Sherry, are you saying that there are too many Broch/MAC posts? Or are
you getting the other subject sites as well? You can 'Unsubscribe' from the
other forums. If it is just us MAC people over-whelming your e-mail; maybe
choose to follow certain people and delete the rest. I have many hours of
breathing treatments a day (morning and night) so I appreciate the reading
material. Plus, everybody deserves a response, which I try to pitch in with.
Hope this helps. -Terri M.
Hello David, I received an e-mail this a.m. from the COPD FOUNDATION.
They are one of several that hosted that conference in D.C. and is in charge of
the video when it comes out. It probably has to go through editing, etc. Said
they would send me an e-mail to let me know when it is available. Will let you
and the group know when it is. -Terri M.
Connect
@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