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Yesterday was not a good day. The CF docs are saying we are nearing the end of the "window" on which Mike can tolerate the vent. We made the decision yesterday to put him on a different kind of bed called a prolinator (sp). Basically it puts Mike in a face down position while rocking him from...

Yes, I don't know what insurance you have. But Mike's nutritionist actually ordered them and had them delivered for free to us. I don't know if your clinic has a Social Worker, but the one at ours is fantastic at helping with things such as this! Also check with the CF foundation, I know they...

I am sure you all know, the above was me...but apparently it logged me out somehow...<img src="i/expressions/face-icon-small-confused.gif" border="0">

Thank you to both of you. At least that gives me hope. Apparently I can not visit until 8:30am. I am going to have a cup of coffee, and relax for a few. And go back to the hospital and do my best to be strong. I realize he needs my love and support now more than ever. Thank you again to all of...

Hello again everyone, I have been on and off this site for about 8 or 9 mo., but I have not posted for a while... My brother has CF and is 28 now. He lives with me and I have been his caretaker for the last year. He has been in and out of the hospital over the last year and has been through so...

That happened to my bro the first time too. We decided to start slow, nebbing 1x per day with 2 or 3 drops at first, then slowly increase. I don't know how much you are doing now...but that worked for him.

My bro too has CFRD (cf related diabetes). That sounds EXACTLY like how he gets when his sugar is about 250-300. The first time we (he lives with me) experienced it. He was wheezing, out of breath, shaking, sweating, high heart rate/blood pressure and a little disoriented. He too thought he was...

He was only taking the Advex until yesterday. We went to the CF clinic yesterday and told the doc about the bleed. He gave us a prescription for Vitamin K (per my request because I was having a hard time finding it by itself, and enough of a dosage to make a difference). So we got that...

Thank you for the answer. I don't think he has an infection right now. All else is good. I am going to get additional Vitamin K, as well as the L-Lysine today. I knew/read about the lack of vitamin K. My "theory" is there may have been an old clot, or plug from the other bleed he had in the...

Back again with more questions. My bro has been on the H2O orega for about a week now. We started off slow, about 2 to 3 drops once a day. He said he is coughing up wayyyy more mucus then he has in years, his lungs feel clearer and is breathing easier. He has had lots of "coughing fits", but...

I think everyone's body is different. The research Sean and others have done, and all of the info on this site is awesome and has been a great help to us. The H20 Orega, in just one week has made some amazing changes in my bro. He is finding his lungs are clearing FAR better than with any other...

My bro was on 80mg of prednizone in the hospital, we are tapering off now but he is so extremely bloated, swollen. His skin is stretched so tight he can barely move. He's drinking lots of water, and cut down on the salt...any suggestions on how to make him a little more comfortable until it goes...

My bro is home from the hospital now (YEAH). But I wanted to thank you so much for the CFRD info. Last night he started wheezing, sweating and began shaking really bad. I didn't know what was happening. He thought he was having an anxiety attack. If it had not been for YOU and our conversation...

I too have been doing a ton of research on probiotics. Specifically allicilin. There have been several studies which state it is very effective in controlling/curing MRSA. Most of them are based on a topical application on wounds infected with MRSA...My brother cultures for MRSA and psuedo.. I...

Thanks Sean. I ordered that and the reg oil too for sublingual. Any dosage recommendations? Should we start out slow and increase? We are SOOOO excited to get started!

Is this the correct suppliment for nebbing??? I am trying to order it on-line now.. Thanks again!!! Also, should I order some of the oil for my bro to take orally too??? I also found a pharmacy locally who manufactures their own compounds. I am hoping to have them make up some kind of...

Lindsey, That's real interesting about your friend. CF can be quite a journey. That information I found about the garlic extract and MRSA is at http://www.uel.ac.uk/news/press_releases/releases/garlicmrsa.htm Thats funny about all of the doctors. We have had more than one of those...

Lindsey, That's real interesting about your friend. CF can be quite a journey. That information I found about the garlic extract and MRSA is at http://www.uel.ac.uk/news/press_releases/releases/garlicmrsa.htm Thats funny about all of the doctors. We have had more than one of those...

WOW coltsfan. This is like dejavu! He had "Red Man's" the first time they put him on Vanco too. EXCEPT no one knew what the hell was going on. Then he developed something called "cellulitis" which is a red, painful inflamation of the extremities. OH how I wish I had this site then. He too has...

WOW coltsfan. This is like dejavu! He had "Red Man's" the first time they put him on Vanco too. EXCEPT no one knew what the hell was going on. Then he developed something called "cellulitis" which is a red, painful inflamation of the extremities. OH how I wish I had this site then. He too has...