Search results

Anyone hear whether tanning beds is a viable option to raise our vitamin D levels in the winter? Have your doctors ever suggested this? Thanks, P

Hi! Doctors found that my vitamin D was very low. What kind of regimin are you guys on for vitamin D? BTW I came across this article about the subject where researchers who tested a vitamin D repletion regimen said it was "strikingly ineffective" <a target=_blank...

My CF docs sent my blood to be tested at Mayo clinic for "full gene testing" and said it was the same as Ambry. Anybody hear anything like this?

So, went to a CF center (one of the "top" ones). The visit was under a research protocol. Kind of frustrated. Before I went I had: 55,53 sweat chloride, missing vas defs, 508 detected from 35 mut test, low vit D, and symptoms that are under the list for CF. The junior doctor told me that lots of...

Anybody ever had a pool of blood in their eye out of nowhere?

I know CF can allow bugs to colonize the lungs. Have any of you heard of CF allowing bugs to colozine and set up camp in the sinuses? Also, is it bacteria of can CF enable viruses and fungi also? Can CF enable bacteria that are unaffected by common anti-biotics? Two years ago I started having...

Have any of you heard of CF being pretty much in the background and undiagnosed and then all of a sudden quickly getting worse at a later age?

Anybody experience twinges of pain that appear to be from the bones from time to time? In particular, I'm experiencing it in my fore arm and lower leg bone.

I've already done the 35 mut gene test and the sweat chloride recently. The clinic I'm going to is doing another sweat test and 35 mut test. I'm wondering why are they just redoing tests that are already done, seems like a giant waste. I figured they would automatically want to do the full 1400...

So in preparation to going to the CF clinic I just did a sputum culture locally because I have a cold right now and it's easier to get the stuff out. For the past 2 years I'm so dehydrated it doesn't feel like I can easily get stuff out of my lungs. Anyway, when I did it a lot of spit ended up...

Hey guys. I was wondering if you guys get really bad darkness under your eyes. I've been feeling worse and worse over the past year. Past few months I've been feeling really ill and my head hurts constantly. A darkness has been gradually getting worse under my eyes. Despite 8+ hours sleep, I...

Are there any of you out there with no lung damage? Thanks, P

Any of you guys know of any neurologists and/or opthomologists (or neuro-opthamologists <img src="i/expressions/face-icon-small-smile.gif" border="0"> ) that are specifically knowledgable about CF and how CF could cause neuro/eye related issues? Thanks, P

So are ADEK vitamins much higher amounts of the vitamins than you would find in multivitamins?

Just got diagnosed recently (age 36). I've been talking to two great clinics - both want to set appointments with me. I'd like to see both at least at first, but I don't know if that'll cause problems. I'm having some nonclassical things happening on top of everything and I'm thinking two heads...

Ok, so I know it's bad for us to be around secondhand smoke. What about a 2 week stay in a house where someone normally chain smokes everyday (for years), but wont be smoking inside while you're there. They shouldn't be so bad, right?

I've had a wierd consistent soreness in an area of my spine for about 3 months. Feels kinda like its rubbing the tissue around it raw, or digging into the tissue around it. Wierd. Anybody hear anything about anything to do with the spine and CF. Seems like a stretch but I've had every test known...

UNC or Johns Hopkins? All I know is that UNC Adult CF clinic has 30 years exp with adults and JH has 50.

I've stumbled across some things talking about Viagra helping with CF symptoms. Strange how sometimes they find medicines helping with totally unrelated conditions. Anyone know more about this? i.e. <a target=_blank class=ftalternatingbarlinklarge...

In researching CF I came across a story about a soldier how had no clue he had CF. While in the desert he was drinking way more water than the other soldiers and was passing out during drills. They sent him to a hospital, couldn't find anything - he got redeployed. Same things repeated. Someone...