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3 hours ago · Sleep issues and MAC? in MAC & Bronchiectasis

@kathyhg – I too have sleep issues, but mine have been with me most of my life. Here are some of my personal observations. On med days, my sleep is especially fractured, as well as when I have to neb more than once a day. On days when I am most physically active I sleep better, so even when I am very tired I force myself to be active for a couple hours, even if it is just housework, shopping or a good walk. I also do everything i possibly can while on my feet – for example, when I paint or sketch, I stand. I limit caffeine to 2 cups of coffee early in the day. Not even decaf or green tea later in the day. Finally, my Mom's rheumatologist told us many years ago that you shouldn't fret about waking up during the night, just rest quietly. He said anxiety about lack of sleep becomes a cause of it. And he said don't try to make up for wakefulness by sleeping later or napping. Maintain a regular schedule. My schedule does include a 30 minute rest midafternoon, but not any longer.

2 days ago · softener/conditioners in MAC & Bronchiectasis

@irene5 Municipal water supplies are filtered. However, not all treatment facilities are equal (think of all the news about Flint, Michigan) And water can become contaminated on the path to your faucet. And some of us are on wells. So, if it is a concern based on testing or health issues a proper filter is indicated.

2 days ago · softener/conditioners in MAC & Bronchiectasis

Softeners are for "hard" water – with iron content. They don't remove chlorine, or much of anything else. Hard water causes soaps not to suds or to rinse away very well, can turn clothing yellow if exposed to bleach, can leave your skin feeling itchy or prickly, can leave stains in you plumbing fixtures… Not all city water (or well water) is hard – it needs to be tested. Softened water contains more sodium, is not necessarily good for you to drink and is bad for any plants and lawns, so if you have a softener, it should be bypassed for your kitchen and outdoor faucets.
Conditioners are for removing particulates, chlorine, fluoride, and some disease causing "stuff" like cryptosporidium or giardia – DEPENDING on the exact filters you choose. Walter filtration systems currently on the market do not remove MAC (with the possible exception of UV systems, which are not widely in home use yet and require substantial maintenance.) Multi-stage filters, which house two or more different kinds of filter cartridges, are used to treat multiple problems with water – for example, remove particulates, improve taste, and remove giardia cysts. So you need to understand what you are trying to accomplish, then match the filter(s) to your goals.
Water filters are NOT purifiers, so should not be used to treat non-potable water in order to make it drinkable.
If you have bad tasting water, a filter will help with that, but won't reduce hardness; you may need both. Filters have a limited life, and must be changed regularly to be effective, the smaller the filter the shorter its life. Also read the cautions that are in the package, seasonally used filters must be replaced when you turn the system on again due to potential for bacteria to grow. We have had a lot of problems with the Brita-type filters clogging prematurely from poor quality water, and even developing a moldy smell/taste after a short time in use.

Wed, May 8 2:32pm · Ultraviolet water filter system in MAC & Bronchiectasis

@pinkwarrior Sue the science nerd here – I know UV light is capable of killing MAC/NTM in air and water under certain conditions. I also know UV systems must have the correct wave lengths (which degrade over time in the bulbs) and require significant regular maintenance to remain effective.
I was unable to find any studies of HOME UV water treatment systems and their long-term effectiveness against NTM or TB. The best I could find was ads or promotional literature by manufacturers, distributors or their associations, which I personally would not rely on in making such a decision.
I would insist on receiving a report from an independent laboratory that tested UV systems over a period of time in home use on water KNOWN to contain NTM or TB prior to treatment. I would also want to understand the frequency and cost of cleaning, light replacement and other maintenance to maintain effectiveness over time, and whether it could be done easily by me, or if I needed to hire a technician to do it.
Home-scale UV water treatment units are a fairly new thing, so be wary of any sales/distributor claims, and ask to see proof before you make the significant investment. It would probably not be a bad idea to have your water tested to confirm you have NTM in it before you take these steps.

Sat, May 4 9:54am · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

@kpost2 Do you also have MAC, and are you being treated with antibiotics? If so, you need to avoid alcoholic beverages because the antibiotics are very hard on liver and kidneys, and alcohol just adds to the load.
Are you suffering weight loss as the result of bronchiectasis and/or MAC? You need to be especially alert to maintain adequate calorie intake, especially a good amount of protein, as it helps maintain & repair tissue.
Also, many with bronchiectasis have GERD (reflux), either with symptoms or without (aka "silent GERD".) If you are among them, you should be following GERD precautions to avoid gastric fluids getting into your lungs, causing more damage. Search for "GERD Diet" or "GERD precautions" and look at sites ending in .edu or .org for the best research-based information. Avoid paying attention to sites trying to sell you anything, whether it is supplements, special food, or "secrets…"
Other than that, avoid foods that make you feel worse. If you decide to eliminate dairy, be sure you use adequate calcium supplements. There is also some evidence that bronchiectasis is associated with low Vitamin D levels, bronchiectasisnewstoday.com/bronchiectasis-experimental-treatments/vitamin-d/. Maybe talk to your pulmonologist about Vitamin D-3 testing & supplementation.

Wed, May 1 3:16pm · MRSA in MAC & Bronchiectasis

@auntnanny Hi – At various times in her later years, she had both types. When she had MRSA in her lungs, she was coughing and producing a lot of mucus, so we were advised to treat it as contagious by the MN Dept of Health – boy was she mad about that! And the wound infection was definitely contagious – in her case it was acquired from another resident of her assisted living facility, who had in turn acquired it in the hospital. Both of my daughters are RN's (one in a pediatric ER, the other in a high school) and both told me MRSA is considered transmittable if the person is symptomatic and not under treatment with proper antibiotics. For myself, with several implanted joints, I don't mess around with that stuff – my cousin lost her hip implant to a MRSA infection and has been in a wheelchair without a complete joint for 10 years because no one will take a chance on giving her a new joint.

Wed, May 1 9:49am · MRSA in MAC & Bronchiectasis

@rasmusje Wow – both MAC & MRSA can be scary. MRSA, like MAC, is everywhere, and even though many of us carry it in our bodies, we do not necessarily have a clinical level infection. With bronchiectasis, I think they treat it because it is another opportunistic infection that attacks those with other health issues. If you are symptomatic with cough and sputum, you need to ask your doc if you may be infectious and take recommended precautions – unlike MAC, MRSA can be transmitted to others. When my Mom had it, she was placed in isolation in her assisted living apartment until 2 weeks of treatment was complete (they actually treated her much longer.)

Mon, Apr 29 8:46am · Best Shower heads for MAC in MAC & Bronchiectasis

The science nerd here again –
While I agree that it is prudent to avoid vectors of infection, I still find the research on the issue of NTM in showers to be inconclusive as to whether there is high risk of infection there.
While the study cited, https://www.pnas.org/content/106/38/16393.long, was somewhat alarming regarding the widespread incidence of NTM in shower heads, I found this paragraph especially interesting:
"…Showerhead biofilms and water are potential sources of aerosolized microorganisms. However, different microbes and biofilms have different qualities that can influence partitioning into aerosols. Indeed, we and others have shown that mycobacteria can be selectively aerosolized, possibly a consequence of their waxy, hydrophobic quality (3, 25). To determine the makeup of shower aerosol microbiology, we collected aerosols during 20-min unoccupied shower operations with three showerheads analyzed rRNA gene sequences and compared them with biofilm, water, and ambient bathroom air samples. Microbial constituents were reflective of feedwaters and not biofilm. It seems possible, however, that any initial pulse of biofilm components would have been extensively diluted by water delivered during the aerosol collection period, and so not detected…"
In other words, the very characteristic that makes NTM difficult to eradicate, the waxy biofilm, may also make it less likely to aerosolize in the shower.
While the study goes on to conclude that showers may be a vector of infection, the paragraph above doesn't support the specific conclusion, in my opinion. Instead, I think the conclusion "…We conclude that there is need for further epidemiological investigations of potential sources of NTM infections, including showerheads. The methods we use here provide an experimental approach for such investigations…" is much more important.
My takeaway from all of this is to exercise caution, minimize exposure to the initial blast of hot, steamy water from any shower head, and continue to my healthy life precautions. For those who are seriously concerned about water-borne infection, I would say shower head replacement or disinfection is one of those reasonable precautions.
Also, I find it very interesting that NTM are far less prevalent in well water – makes me happy that for half the year, that is my water source!