surprise
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posted
By the way, just starting a new supplement at night, Cortisol Calm. Still trying! And still healing.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Dogsandcats
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It was about 5-6 years ago.....I threw out the machine.
Between the cat playing with my air, the machine leaking on the night stand, feeling like Darth's kid, the sore spots on my
nose where the little "pads" as they call them- they are nose plugs....and the best....the "joker" smile ( indent) left across my cheeks from the straps- which looked suspicious on my face as I went into work. Looked like I was wearing one of those straps they offer on tv at 3am- promising to lift my waddle and cheek flab, causing me to look 30 years younger.
I wear a mouth guard cause I grind my teeth. My life is so serene can't imagine why I would grind......
But- they have new masks, new machines and I am a certified WUSS when it comes to my creature comforts. So take my sarcasm and remember many peoples swear this has changed their lives! One man takes a generator camping so he can wear his mask!
Yes she sounded like Mary Poppins. Very prim and proper, and all that.
Don't drink a lot of water that day. After they hook your head and body up to the "Frankenstein" wires and if you are lucky to have the mask on, going potty - well- isn't fun. All you need to do is drag one foot behind and throw in the mummy walk too.
How could a place with beautiful art and a Murphy bed not have clean sheets?
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Kudzuslipper
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""""How could a place with beautiful art and a Murphy bed not have clean sheets?""""
Kudzuslipper
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posted
3 days til the worst night of my life!
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Judie
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Gosh, that's terrible. I hope you can find another source!
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Ellen101
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Kudzu how did your test go? Hope it went ok! I know this is something I need to consider doing as well. My sleep problem is strange. I wake every 2 hrs like clock work. I need to pee and have something to eat.
This started many years ago in my late 20's. At the time they thought it was low blood sugar. I did a glucose tolerance test and the results showed hypoglycemia.
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Kudzuslipper
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my test is wednesday Ellen. I am freaking out!
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sixgoofykids
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Kudz, I weaned off sleep meds, but got a longer time to do it than you did. I take 5HTP (l tryptophan doesn't work as well for me, neither does melatonin). Getting my adrenals healed helped my sleep most of all.
Valerian root is good for relaxing.
We did lose a previous board member (Clarissa) a couple weeks ago, one who was well, due to sleep meds. Her tox screen isn't back yet so I don't know what she took, but she died in her sleep after taking sleep meds.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Kudzuslipper
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posted
Thanks for the suggestions Six.
I survived the ordeal. I wish I could post my wired up selfie!
Dogs and cats my. "Voice " did not sound like Mary Poppins or nurse Ratchet. She was actually very nice. The Murphy bed was not too bad... Sheets were clean... And I was not too freaked out.
Hopefully there will be some useful info. Now that I've done it, my pcp will dole out a script at a time as I taper and until I get usable info for moving forward.
I will say, I have tapered down to 5 mg from 7.5 and I am not sleeping as long... But my word loss seems to be better.
I also have to say, I believe the poco ionic magnesium ReMag that Tutu often mentions seems to be making a huge difference in sleep and with pain.
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Kudzuslipper
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So... I stop breathing 22 times am hour. It is considered moderate sleep apnea. They want to fit me with a cpap mask. I know I won't wear it. I will talk with them about a mouth guard. Tbc.
Posts: 1728 | From USA | Registered: May 2011
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posted
Some of the masks are not so bad. Give it a whirl!!
Say... Do you guys really say "crook" in my neck or is that your auto-correct talking? Two of you said the same thing, so I'm thinking I must be weird.
I always said "crick" in my neck. Just wondering.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Kudzuslipper
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Hey there... me again. so I get my mask on thursday. In the mean time I am trying to reduce my ambien. I am down to 1/3 or 1/2 a 5mg (I was taking 2/3rds of a 10mg)
I am falling asleep but not staying asleep and even on the few nights I do stay asleep I am so very tired during the day.
I also have an annoying eye twitch.
are these withdrawal symptoms?
think it could be cause my 5mg pills are from a different manufacturer?
oh and tutu--- I believe I say crick too, which I am also experiencing from trying to sleep on my side instead of my back.
what a mild annoying nightmare this all is... not as much of a nightmare as a lyme or bart herx...
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surprise
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Hang in there Kudz- I am really tired, too. Totally get it. Please let us know how the mask is- good thoughts it brings deep restorative sleep---
Crook in neck here.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I DID NOT KNOW WE LOST CLARISSA! How awful! I've chatted with her in the past. So sorry to hear!!!
kudzu... Not sure about the twitching. I know you can get it from lack of sleep, but might be withdrawal. Try easing off of it more slowly.
Have you tried melatonin?
Bunch of "crooks!"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
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quote:Originally posted by Lymetoo: I DID NOT KNOW WE LOST CLARISSA! How awful! I've chatted with her in the past. So sorry to hear!!!
Yes, really sad. I didn't start a thread because she hasn't been active since she got better about four years ago and at that point she mostly separated from the Lyme community.
I don't know what she took, but I know the night before she died she had trouble sleeping. There's no reason to suspect suicide .... but she did take some kind of medicine to sleep the next night and never woke up.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sixgoofykids
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I weaned off sleep meds over 6 months. I would reduce one night, then normal amount the next until I could handle reduced every night. Then I'd reduce (or eliminate) every other night, etc. Until I was off them.
I take 5HTP at night now. Just a half dose. L Tryptophan is similar but didn't work as well for me and was harder to find.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Kudzuslipper
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posted
I had to go back and see what was posted about Clarissa. I am so sorry to read that. it is sad and scary.
[ 09-25-2014, 11:03 AM: Message edited by: Kudzuslipper ]
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Kudzuslipper
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Could it be that woman are dying in their sleep due to generics?
I couldn't find anything on google. But this lower dose generic zolpidem is not at all good for me. First off, it feels stronger, I fall asleep faster and it's a scary dead sleep. Secondly, I wake up exhausted. And I'm feeling all edgy. And my eye is twitching.
I was encouraged to take the whole pill (still less than what I was taking) while getting used to the cpap. I have spent the entire day today in and out of sleep.
Which makes me think... Have these problems popped up because there are more and more generics out there?
I had never, ever felt this way before. I was taking a generic 10, but the 5's are a different manufacturer. I am shocked at the difference between brands.
Why couldn't they just leave me alone?
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surprise
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posted
You are not crazy, there can be a difference between generics, and some people do feel it:
posted
kudzu .. It's not that one that you take under your tongue, is it?? That one has tons of fillers and additives. Awful stuff!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Kudzuslipper
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No. It's a regular pill tutu.
Surprise, that's a scary article. 2 nights on the mask. Irst night I didn't sleep a wink (the machine even told me no sleep) Last night (in the evil generic) I slept 5.5 hours with .7 events. I then took it off. We'll try a full night tonight.
The sleep doctor gave me 3 months of ambien... I just can't take the brand I had been taking cause the 5mg is a red pill... I'm allergic to red dye.
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surprise
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posted
Can you wash off the dye? I've heard of Moms doing that--
Well, if you tell me the mask gets you deep, restored, no pill sleep in the upcoming weeks, I'm in :-)
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
GACK!! Dyes are horrible!! That will cause histamine levels to rise and that in turn will keep you awake.
Call your doctor to get it changed to another generic. I know some brands are actually white.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Kudzuslipper
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So now I'm procrastinating going up to bed. I'm petrified of the mask and the pill.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Kudzuslipper
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nope...not a chance of that. the machine said I used the mask for an hour and a half... but didn't sleep. then I got a migraine... so that was my night.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Kudzuslipper
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I have not tried the CALM Tutu. but taking the re-mag. my muscles feel great! I was feeling really great all over-- until they started to mess with me!!!!
I did take a half of ambien -- but as a test used the one's left over from the good brand... of course it didn't work cause it is milder and I am now hooked on the evil brand.
I may just go cold turkey-- and when I can't function anymore go on disability...
for anyone looking for info on Gaba and L-Theanine... found this article...
posted
I'm so glad the ReMag is working for your muscles! Have you tried taking some at bedtime? I always do.
Have you called your doctor to ask for the other Ambien? You can even get them to over-ride the generic. They can put in a request to your insurance company.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Kudzuslipper
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Yes I do take the remag at night. It does help... I believe it's why I was able to go down in dose.
I feel like right now, I have to lay off asking for anything ambien related for a while... Be a good, compliant patient and give everything a chance... So I can say I really tried.
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Kudzuslipper
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Ok... Now I think their plan is to make me so miserable that not sleeping very well seems like a treat.
Last night no pills. No machine. I spent a lot of time lying there with my eyes shut... But I must of slept cause I woke up pretty peppy.
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groovy2
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posted
Hi all-
I went to a sleep doctor and was given Ambien- made me feel Horrible and I did not sleep-
Ambien scared the hell out of me and stopped taking it after 3 nights-
I had also talked sleep doctor into giving me Valium -
Valium helped me get a good nights sleep- it has been the only thing that has worked -
Sleep doctor decided that I was not abusing Valium and now prescribes it to me --
Another thing that really helps me sleep is having back ground noise -TV -
I made a Youtube channel that is full of interesting science shows - shows play contentiously and it really helps me sleep threw the night-
Boring or news shows dont work- for me it need to be something interesting- I have no Idea why but it works for me-
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Judie
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posted
I finally had my first good night's sleep in ages.
My doc recommended phosphatidylserine before bed. I'm taking it along with glycine and l-theanine.
I use to depend on Ambien, but then insurance stopped paying so I had to find and alternative. It's taken years.
Good luck. I forgot what it was like to sleep.
Posts: 2839 | From California | Registered: Jul 2012
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Groovy.. glad the Valium is working. Pretty addictive stuff though.
I hate taking things that are hard to get off of .. like my Nexium!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Kudzuslipper
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groovy, glad valium is working for you. It makes me drowsy but keeps me in this spin of falling off with a thought and then waking abruptly with the unfinished thought-- even if it isn't a pressing or stressful thought...
Judie, I will be looking up phosphatidylserine. I never heard of it. is it reccommended that it be taken with glycine and l-theanine?
after a month of trying to get down on ambien, with my evil "made in the usa" generic. or even worse afraid to take anything... and a full week and a half of no sleep, migraines and sinus and tooth aches from trying to use the CPAP. My pcp seems more interested in helping me, at least communicate with the sleep dr about ambien. She is all for me getting the brand I was used to and cutting them in half (duh, kind of like I was doing!) but needs the scripts to come from sleep dr. but seemed to be more open to it if I could stay at of below 5mg.
she also, gave me a method of cutting down. 1 week 5 mg. 2 weeks alternating 5mg and 2.5mg. 2 weeks 2.5 mg, 2 weeks or more alternating 2.5 mg and none. until I can do none.
she also suggested I try melatonin-- not sure if that is while cutting down of after-- anyone know?
[ 10-10-2014, 05:45 PM: Message edited by: Kudzuslipper ]
Posts: 1728 | From USA | Registered: May 2011
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posted
Background noise (like a fan) helps tremendously but I also take Ambien CR which means it lasts 8 hours. Most nights I get a good night's sleep. The secret is, BE IN BED WHEN YOU TAKE IT!
One night I was fooling around cutting mats for my art work after taking the Ambien. Earlier that week I had bought some hair extensions and had each one rolled up on a roller to make them look more real (about 10 of them) and had them in a plastic shopping bag.
That night I stayed up late after taking the Ambien, worked on some artwork and cut some mats. For some reason, I walked into my daughter's room and told her I had some treats for her dogs.
She said, "Mom, it's 2:00 a.m. in the morning!" I told her to look and see what I had for her pups and then proceeded to pull out the rollers each one with a hair extension on it, one by one and showed her the "treats" for her dogs (she has two dogs sleeping with her).
She asked me the next morning if I remembered doing all that and I told her no. I vaguely remember going in her room but that was it.
So, the main thing to remember is: Be in bed when you take your Ambien and you will have a good night's sleep. At least I do.
Keebler
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posted
- Sandy,
Even taking ambien in bed . . . Some people later get up out of bed, even grab the car keys and drive, unaware. If you had that experience, I'd be extra cautious as to if you might ever get up out of bed and do various things, unaware.
It's not that rare, actually. There have been several traffic accidents due to this.
NYT - Ambien Drivers -
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Judie
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"Judie, I will be looking up phosphatidylserine. I never heard of it. is it reccommended that it be taken with glycine and l-theanine? "
Gosh, I don't know. The glycine and L-theanine were an ND's recommendation when I got off ambien. This was before Lyme.
Lyme made my sleep go cuckoo. My Lyme doc went over my supplements (suggested glycine, I'm already on it) and suggested adding the phosphatidylserine.
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Kudzuslipper
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Keebler
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posted
- Sadly, the article is about developing drugs to "turn on" or "turn off" - they say they are about understanding better, and that's a good thing but make no mistake, it's all about developing uppers and downers.
Now, this may (more may not) be good for the military but for the general public
- and especially for those ill with things that cause insomnia but go untreated or undertreated (such as stealth infections connected with alzheimer's, since they are targeting that population for this drug developement, too)
or those with dysfunctional body organs/ systems that go unsupported or are stimulated by day with so many food additives, etc. the wrong kinds of lighting, TV techniques that would overstimulate a rock - harsh beeps / buzzes on every appliance and gadget we own even our toothbrushes can wake up our brains, really (and all those beeps are far worse in medical centers) -
- I think it can be very dangerous to keep looking to drug developments to boost us by day and knock us out by night.
This is not just to offer drugs that people want but also drugs that nursing homes can use to control residents, when it come to alzheimer's patients being one of their target groups, you can bet on that.
It's easier and more profitable than treating the cause or support the body with nutrients or by behavior that work with the body's natural rhythm.
There is hope, though in one sentence:
"This study will help determine if these drugs can replace sleep,
“or if there is something so important about sleep that no pharmacological intervention can replace.
What are the links between sleep disruption and cognitive decline?”
I just hope she / they have zero influence from the pharmaceutical industry. Though, that's not likely.
We already understand so much but ignore it. Take out the fluorescent lights in nursing homes and colleges, get people unhooked form TV (especially commercials and especially for action movies) that sends the brain to the moon a million times a day, etc.
We have a lot of the knowledge but other industry is so tied into boosting us every waking moment that we are just sitting ducks when it comes time for sleep. So we settle for a mallet to the head to knock us out, for it's the only way we'll be able to settle down.
I do think it's human nature, though, that when awake to want to be engaged and our TV, our internet is the campfire / storyteller of our time. What would good is to figure out a particular kind of screen or light -- or action "blocker" of sorts to engage at 5 p.m.
Massage teams for every neighborhood? Nighty-night storytellers? Kumbaya clubs? -
[ 11-01-2014, 06:00 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Tonight: Daylight Saving Time Begins for most of us. Maybe I will reset my clock now and see if that helps prevent that first week zombie sensation that seems more prevalent in the fall than winter.
Those with light boxes: time to dust them off and rev them up at first light, eh?
I hope those researchers really look to light & sound for a lot of their answers about sleep. The wrong kinds of light, the wrong times . . . and too much or irritation noises, even if low key, do derail sleep for everyone.
The liver, too, is a major player that I'd bet all the money I have that they don't even consider. A stressed liver simply will not allow good sleep. And so many drugs really stress the liver so that's why the boomerang effect so often, I think.
I wish some of the top naturopathic researchers would get grant money like this. I'd like to see some on this team, too.
What if that grant money was invested to kill the beeps on medical machines and replace those "alarm" tones with a system that was not alarming to the brains of patients - and care givers alike . . . and a lighting system for care centers that is not going to offset anyone's sleep cycle.
Is it any wonder why care givers might need drugs to calm down? And then to boost up the next day from all this assault?
Helping the most critical care patients and those who work with them with this seems the best investment first. I think we have lost sight of some of the most obvious causes.
The military, too, has some similarities in shift workers, and light, noise and all kind of adrenal overload -- or even fatigue to overcome in the twilight hours while being alert on duty can matter so very much.
Professional drivers and pilots (well, really anyone who drives, too) would also make be excellent group to keep in mind with any of this research. And this is where drugs to turn on and off can be a slippery slope.
We tend to forget the actual real time our brains take to adapt from being engaged to getting to an actual slumber zone.
I wish this kind of research would be about finding answers more so than developing a product, though. My guess is that this grant money is tied to development of marketable end product. It just sounds like that so my radar got tweaked.
Still, of course, we can still learn from what they learn and apply in our way as well. -
[ 11-01-2014, 06:50 PM: Message edited by: Keebler ]
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