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There is an unknown number of asymptomatic but genetically CF people walking around. I'm​ not being flip, there's a lot we don't know about CF. We're an orphan disease which means that data on rare mutation sets may have one or two people who have the same genetics, if that. There are...

The best way I experienced fast weight loss was Cholera. I don't recommend this but rapid weight loss depends on what and where the weight is. My brother wrestled in highschool and college. Unless you are wrestling heavy weight, most wrestlers will try to make the lightest weight class at...

Pretty cool. I was prepared to offer the conventional​ treatments, none of which I am fond of. Thanks, LL

I'm embarrassed to be a citizen of a Nation that is obsessed with material wealth and possessions to the exclusion of quality health care for all citizens. With our wealth and our democratic principals, universal health care should be a right. If it's to be an entitlement, I fear it will be at...

I discovered that a suspicion I have held for a long time about CF isn't an original thought. Imogene, our fearless Founder of CysticFibrosis.com and I were talking some time back and when I remarked that CF MUST have another gene that controls the degree of disease penetration, severity and...

Sunny 9432, I hope that I didn't offend you. I appreciate your time taken to clarify a lot of issues CFers and the parents of CFers face. You are going to do great with your new challenges. In my experience, the warning about taking too much has the unintended consequence of being under...

Wow! I'm impressed with your entire post and it's apparent that you are privy to information not commonly available. I quoted your description of the polymorphisms 5T, 7T, and 9T because I want to learn more about them. So far I have a single quote from a scientist at Ambry Genetics speaking...

The large amount of blood he's been coughing up are very likely hemoptysis. My first incident of hemoptysis was a surprise. I can't remember if I caught the first one or maybe the next couple of blood clots, but I was in my fifties and not easily terrified. They are huge in terms of blood...

I am not particularly encouraged by my limited searches for other people with my mutation set. As much as we'd like to be able to look at somebody's CFTR mutations and gain meaningful and useful information, it doesn't seem to work that way often enough to draw meaning and find usable...

Holy Crap!!! And all this time I was confident that we were protected by GINA. Thanks for the update, I'm not going to leave this one alone, LL

Sunny9432, Forgive yourself for taking 12 years to arrive at a diagnosis. As Printer noted, you will discover people on this site who weren't diagnosed until 30, 40, 50 even 74, and not just a few anomalies. Hindsight is great if you want to catalog all of the CF symptoms in retrospect, but I...

Beautifulsoul, You're mentioning Reglan brought back memories of having to get it from Canada because of the restrictions​ in the U.S. I never looked up why. Last week I attended a CME course on the cytochrome P450 gene complex. A group of enzymes produced by the liver, don't metabolize...

I am sorry to hear of your issue with DIOS, or Distal Intestinal Obstruction Syndrome. It is common in CF, however, its popularity in no way diminishes the deadly seriousness DIOS presents. The meeting point of the large and small bowels is the distal-distal junction, so named because they are...

My hope is you have seen or talked with your doctor. Hopefully you are getting some relief. Not to presume to advise, but with the nebulous nature of your pain, if I couldn't be seen, I would be asking for something to address the pain. Untreated pain is not something you can endure without...

Thank you for answering one of MY mysteries. For several years (4) I have been increasingly intolerant of heat, in particular being outside in the sun on a day 70°F or more. My doctors speculate that I just can't cool through sweating, or similar answers, but it doesn't fit. If I sit down in...

I shouldn't be saying this but I'm a glad to hear that I'm not dealing with this alone. Something unavoidable in late diagnosis of CF are all the issues that fit like a glove, in retrospect. Beyond a doubt, prevention is better than having to cure the fungus among us. Candida, a specific...

My impression is a genetic cause or an autoimmune condition is behind your insulin resistance. Type 2 diabetes often involves insulin resistance and the cause behind that is a diet I'm quite sure you don't subscribe to. This is where you look at your ancestors and parents for something that...

Simba15, Thanks for your contribution. I was thinking about you and a couple other CFers who don't fit the stereotype of being skinny all the time I was trying to write the post you quoted. Insulin resistance, Hashimoto's Thyroiditis (Hashimoto's syndrome) and any number of autoimmune...

Night sweats and hot flashes with or without drenching sweats are very common in CF. At some time nearly all CFers experience them. It can be chronic or episodic. Chronic sweats may wax and wane, but it's always an issue. There's a CF issue causing this, but I'm getting ahead of myself...

WATCH OUT FOR LINZESS! I did see my GI specialist and was prescribed Linzess without my bringing Linzess up, he believed it would help. My visceral pain has gotten worse over the last year and I am prone to constipation due to IBS amongst other things like the medication for pain. I was...