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Posts (17)

Aug 20, 2018 · Untreated MAC in MAC & Bronchiectasis

I found Heinz Cleaning Vinegar in a gallon jug in Walmart in the household cleaning products section. It's a lot cheaper than buying the smaller bottles of vinegar.

Aug 19, 2018 · Untreated MAC in MAC & Bronchiectasis

Good for you – hope all goes well. I REALLY do! Let me know – please.
A lot of people jump to the conclusion CBD is "dope." They actually have it for animals and it works great treating them after their chemo.
Before I responded I checked that State – and CBD IS illegal for Medical use unless it's for seizures. They actually did get that specific.
Here in California beginning Jan. 1 it's all regulated so any harmful chemicals and/or pesticides are tested for, and the product cannot be sold unless it meets VERY stringent requirements for purity, dosage consistency and accuracy. THERE CAN BE ZERO TRACES OF THC IN THE CBD. The farms are inspected and they take soil and water samples.That's why I prefer not to buy it online. I know if it's in a Licensed Dispensary it's been tested and stamped.
Helps me sleep too and seems to suppress my cough. Without any hangover or side effects – that's the best part. I always feel better if I get some decent sleep.
You keep taking care of yourself – good job!

Aug 19, 2018 · Untreated MAC in MAC & Bronchiectasis

That's very interesting. I don't have weight loss – in fact the opposite. I have fatigue but that's always been the case from my Firbromyalgia. I don't have phlegmy cough either. Where do you see this doctor?
I think where I live they only know one thing to do – bot experienced enough or exposed to many cases – so they just diagnose the worst case scenario.
I've always been kind of phobic about germs. I'm always removing that rubber gasket from the sink disposal – harbors so much crud under there in the folds. I also throw away the fabric softener dispenser and replace it since I removed it once and discovered all black mold under it! I called P&G and it took me forever to find out the MAIN ingredient in it – they told me it's animal fat! That's what makes the fabric soft. They show the ingredient under it's chemical identification so people don't know. I only use the "free and gentle" version now sparingly, combined with plastic dryer balls. Honestly – everything is toxic. Now my Cheerios have Roundup weed killer in 'em. WTH!
They mentioned getting me this compression vest because I have bronchiectasis also.
I see lots of bikers here in SoCal. They all wear masks anyway – I like the ones that look like a skull face – HA! Funny as heck seeing them on the freeway! They look like one of Captain Sparrow's friends!
They have this HUGE biker rally for ladies only every year here in Joshua Tree. They come from all over. It's like a three or four day event. No guys allowed and I think you have to have a bike.
I grew up in Ontario. You must have had a great time. I used to go on bike trips – then my back got bad. Couldn't find a passenger seat that reclined – darn!

Aug 19, 2018 · Untreated MAC in MAC & Bronchiectasis

Google CBD. It doesn't seem to be legal is your State, except for seizures.

Aug 19, 2018 · Untreated MAC in MAC & Bronchiectasis

I JUST DESACLED BOTH OF MY COFFEE MAKERS YESTERDAY! HA! Is that pfunny?
We all try our own little things to get by huh? You go girl!
I am lucky to have an adjustable bed – so I raise the head at night and it really helps!
I use a mask in the garden now also. And I wore it taking out the dogs during the horrible wildfires here recently that were about 15 miles from where I live. One more freeway to jump and we could have been next! I don't eat after about 6 pm except for a BabyBel around 8:30 I have always been a "grazer" and eat mini-meals every few hours.
I'm not understanding your reference to "no symptoms of active infections." Is your MAC dormant? I thought it could not be cured.

Aug 19, 2018 · Untreated MAC in MAC & Bronchiectasis

Thank you. I was going to ask you which Mayo Clinic. But Mayo is out for me anyway. Arizona won't take any new patients and the others are too far.
I'm setting my sights on National Jewish Health in Denver. Rated #1. Still waiting to hear from my e-mail Pal in Colorado Springs.

Aug 19, 2018 · Untreated MAC in MAC & Bronchiectasis

Just to elaborate on your helpful suggestion about things to avoid – or "no no's" as you refer to them.
I make my own blend of ground coffee – 75% D-Caf, 25% regular. I have one cup in the morning. In the afternoon I have a Decaf K-Kup.
The chocolate I consume is a piece I shave off from my CBD 2 inch square of chocolate – about the size of a small M&M. I can switch to CBD water after I have finished what I have.
For now those are things I enjoy and that bring me comfort.
I think the "culprit" is the caffeine which I am aware of and was why I created my blend to reduce my caffeine consumption.

Aug 18, 2018 · Untreated MAC in MAC & Bronchiectasis

So, I don't know where you are geographically, but I am midway between L.A. and Palm Springs. This area is growing quickly. There is a hospital – Loma Linda in San Bernardino County. A group of doctors got together and decided to build a satellite hospital here and keep the same name, except they would all own aka CONTROL it! Well, at the last minute, the people who are responsible for these things said whoaaah! You can't do that! They wouldn't license them. So the original Loma Linda bought it – in paper only – because in reality these doctors still totally control it!
So, it's these doctors I am going to that are all affiliated with this satellite hospital. They would rather see me floating face down in the neighborhood lake rather than speak badly of or in any way betray one of their colleagues.
So, when I go "outside" of this little web, it will probably mean they'll ALL fire me!
They don't take kindly to "outside" campuses, and figure if that's where I want to go, then they don't need to be treating me anymore. Like going over their heads. I will most likely have to be doing all of my medical care down south in Torrey Pines. (Maybe you heard of it – huge golf tournaments there every year. The campus is right in front of it.) If I have to go to any E.R. here, they will have no access to any of my medical records. So in a way this may very well turn out to be like a big nasty divorce – without the alimony!
I have a lot to consider. Shouldn't be this way. Everyone's primary concern should be my health and what's best for me. Too bad.