Badges (2)


Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (113)

1 day ago · Extreme fatigue with MAC in MAC & Bronchiectasis

@migizii Aaah, fatigue! The bane of my existence! I had a long discussion about it with my ID doc this week, because it can blast me without notice! He explained that with bronch & MAC and antibiotics and poor sleep, it's a grand slam – each one alone can cause fatigue, taken together it's almost a certain thing.
One thing I have learned – except on my very worst days, when I will lie down and try to sleep for one hour, then force myself to get up, I force myself to keep going instead of settling in on the couch. "Keep going" is relative – it may mean going to an event and walking from bench to bench, resting a few minutes at each then moving on. Or it may mean like today (after three insanely busy days) – a load of laundry, sit and work at the computer a bit, another load, sit and eat something, a short stint in the gardens, sit and enjoy the pond, a short walk…
This promotes better sleep, leaves me less frustrated as bits are still accomplished, and seems to make the heavy fatigue days less frequent. Too much giving in to the urge to plop down and not move seems to make it worse.
And, if I have little energy, I eat poorly, so I force-feed myself. My house is stocked with low-sugar energy bars, cashews, protein shakes, cheese, fruits, high-protein smoothies – all grab'n'eat things – which I eat in small portions every hour or two. I find a little caffeine helps too.

6 days ago · Extreme fatigue with MAC in MAC & Bronchiectasis

NIH is a federal government agency, whose charge is biomedical & public health research. In general, it sponsors studies done in other venues, or collects and analyzes data from studies, journals and reports. NIH is not (as far as I know) doing primary patient care, but through your physician you may be a participant in one of their studies. I look to NIH as a source for scientifically vetted information. Perhaps the previous poster was referring to "NJH," short for National Jewish Health, which is a big & well-respected provider of care for lung ailments, does a lot of research on the issues, and hosts an annual(?) conference on Bronchiectasis and related infections.

Sun, Sep 8 11:17am · Losing weight due to MAC in MAC & Bronchiectasis

@esssbeee This is a typical side effect of MAC and bronchiectasis. There is no single cause everyone can agree on, but it may be that the infection itself is a) causing your body to burn extra calories trying to heal or b) causing malabsorption of nutrients.
Either way, I understand your concern. I have the same experience, as well as being on the Big 3 antibiotics for over a year. I have lost weight to the point that I nearly look anorexic (15% loss from my previous weight), and I'm not happy about it.
Here are a few of my strategies, which have allowed me to maintain (but not regain) weight for the past couple months
Probiotic to help gut (due to antibiotics)
Force-feeding myself – an high protein or high calorie snack every 1-2 hours whether or not I'm hungry – 1 oz cheese or meat cubes, 1/2 of a protein drink, 1/2-whole protein/snack bar, banana or apple, yogurt, even ice cream. I stop after dinner due to needing to take my meds on an empty stomach.
Full-fat dairy products (I don't have a cholesterol issue)
Carnation Instant Breakfast in my morning coffee
Smoothie – yogurt, multiple fruits, protein-vegetable powder, carrot & avocado chunks, fruit or veg juice – I make 2 liters at a time, store in frig, keeps about 4 days. I can manage to drink this even when my stomach refuses solid food.
Ditch salads because they fill me up too much, when I do eat them I load with meat, cheese, eggs & full-fat dressing.
Add butter or sauce to all veggies and potatoes.
When you go to NJH, ask for a consult with a nutritionist, especially if they start you on antibiotics. I wish I had that option at my clinic when I started.

Thu, Sep 5 10:17pm · Anyone used Tea Tree Oil in a nasal rinse for chronic sinusitis? in MAC & Bronchiectasis

There is a huge difference between inhaling oregano vapors and using tea tree oil in a nasal wash.
Oregano is an edible substance, and the oil is also within reason – if you are not allergic to it or pregnant. Tea tree oil is poisonous if ingested. There is no indication that there is a difference in toxicity of tea tree oil between inhaling and swallowing. Using tea tree oil in a nasal rinse as the poster suggested could result in it being swallowed, and almost definitely would result in it being inhaled.
Absent scientific evidence of safety and efficacy, we need to be very cautious about appearing to endorse potentially dangerous practices. This is especially true when all of us already face the challenges of bronchiectasis, chronic infections, and challenging antibiotic and other medication regimens.

Sat, Sep 7 12:46pm · Anyone used Tea Tree Oil in a nasal rinse for chronic sinusitis? in MAC & Bronchiectasis

@collcolleenyoung Thank you for your well-expressed response, and the citations to research-based opinions on safety and usefulness.
I understand the frustration of MAC and bronchiectasis, and the difficulty in treating it. It took over three years of illness before my bronchiectasis, MAC and pseudomonas were properly diagnosed, and treatment began. I have since learned this is a common occurrence. Now I am well into year two of treatment for MAC with no end in sight.
It is frustrating when traditional Western medicine doesn't have instant cures for us, and thus tempting to look elsewhere. However, anecdotal stories and endorsements by TV personalities (even MD's) are NOT evidence of safety or effectiveness. Before embarking on any new regimen of alternative or complementary treatment, assurance of safety is vital. And if you take any medications, or have underlying conditions, that which may be safe for your friend or neighbor may not be safe for you. Some things, like colloidal silver, can even render your medications ineffective.
If your physician doesn't want to listen to your questions and consider your ides, you may end up doing your own research on-line. If so, be sure to include ".gov" ".edu" and ".org" in your search to find vetted information. Wikipedia, product Web sites and similar sources are not what you want to rely on.
Remember that while it is frustrating to wait for answers, it takes time for researchers to gather information about safety and usefulness, vet it for accuracy, and analyze it. That's why there isn't immediate information about the latest treatments and "cures."

Sat, Sep 7 12:23pm · In shock after MAC diagnosis in MAC & Bronchiectasis

@baz10 My docs and the NIH say to use a specific type of mask called N-95 to protect against small particles.This is actually a disposable respirator with a filter device in the center that the air flows through, and in my opinion it is not so easy to breather through, but it is far more effective than the type you see everywhere. It needs to be fitted carefully to your face, and replaced after 6-8 hours of use or if it gets wet or torn. These are widely available on-line, and through big-box home improvement stores, and sometimes at Walgreens. I get them at the local big-box store in a pack of 10 for $20, which lasts my husband and me all season and we both wear them.

Thu, Sep 5 2:53pm · Anyone used Tea Tree Oil in a nasal rinse for chronic sinusitis? in MAC & Bronchiectasis

I'm not trying to be alarmist here, but I will say adamantly – DO NOT INHALE that which is not intended to be in your lungs, no matter who suggests it.
Please look at the current news reports of young people, presumably with (formerly) healthy lungs, who opted to put CBD oil or THC oil in e-cigs, and are now facing serious lung damage, which may be with them for life.
Things that are designed to be put on your skin, or into an aromatherapy vessel to disperse into the room air, have NOT been tested and shown to be safe to put into your body.
My sister chose, 20+ years ago, to ingest an oil that was untested for purity and safety at the recommendation of an "alternative medicine practitioner" who we later learned had no academic credentials. As a result, she suffered serious, irreversible damage to her liver, kidneys and pancreas, has many health and central nervous system problems, and is an invalid to this day. She and her husband live their retirement from health crisis to health crisis.

Tue, Sep 3 5:49pm · In shock after MAC diagnosis in MAC & Bronchiectasis

My pulmonologist and ID doc both recommend caution. Here's how i do it with their blessing. Long sleeves and legs, washable gloves and N95 mask. Avoid windy dusty days. Upon coming inside, remove and launder all clothing, shower and wash hair. Also, remember that whatever is in the yard and garden is in your house if shoes are worn inside. For many years, all in our home have replaced outdoor footwear with slippers when coming in. We wipe the dog's feet with a frequently washed towel.