Sinus disease is a common part of cystic fibrosis. Many of us need to have the chronic infection in our sinuses cleaned out and the polyps removed at some point in our lives. I personally have had 4 or 5 sinus surgeries in my life (I've lost count honestly). This type of sinus infection clean-out and polypectomy is called a FESS (functional endoscopic sinus surgery). I recently had a FESS done in December, plus a septoplasty. I needed a septoplasty because my septum had deviated to the point where it was occluding parts of my right sinus. Interestingly, the bone of the upper septum had ballooned out so that it looked quite deformed on CT-scan (but didn't aesthetically look unusual from the outside). When the surgeon went in to scrape it down, he remarked to me that the bone in there was like spongy mush; very unusual. I wonder if it is a sign of osteopenia. I don't know why else this would have happened. Maybe the infection/inflammation had effected the bone? I don't know.
I mentioned in my previous post on my experiments with cystagon that I was going to try Orkambi, the drug designed to correct the CFTR channels in the cells of CF people with two deltaF508 mutations. Well, I did try it. And I'm not on it now. That should give you a hint of my general take on the whole experience. I'm back on cystagon and plan to stay on it indefinitely, or until Vertex comes up with a better drug for me to try. First, I'll give you a little summary of what it is and what it did for (or to) me, and then I will discuss the significance of its pharmacology.
I have been experimenting with Cystagon for about 5 months, and since I'll be going off of it to start Orkambi soon, I figured I should write a post on my experiences. Overall, Cystagon was incredibly helpful to me! In the early stages, it allowed me to feel well enough to travel (which has become very difficult for me these last few years) to see family in nearby states. It also has cut down my total mucus load so much that my recent hospitalization was much more successful because the antibiotics could work better and more quickly. I did experience side effects, but they were mild enough to tolerate, especially given the benefits. I want to write this post to encourage other CFers to try it (with caution and a physician's consent), especially those who have a deltaF508 mutation or those who cannot get access to Orkambi. It is a promising drug that I believe will be used more often in the future with CF (formulated for our specific needs) and for those of you who, like me, need something right now to keep your lung functions stable or high enough until a more effective drug comes around.
As a kid with CF, I was lucky in that I had heartburn rarely enough that regular use of antacids or PPIs (proton pump inhibitors) was not offered to me by my parents or doctors, so I never developed a dependence on them. But it seems such things are often suggested to CF patients as part of a standard CF routine. Due to a number of factors common in the CF lifestyle (poor diet, frequent antibiotic usage, stress, coughing, etc.) acid reflux, heartburn, and gastroesophageal reflux disease (GERD) are commonplace in the CF population. Yet mainstream medicine understands the problem entirely wrong, and so their standard treatment protocol ends up exacerbating the issue and causing more problems than you started with. I want to briefly discuss why antacids and PPIs are inappropriate for CF (and humans in general) and some alternatives to these pharmaceutical treatments for reflux.
There is an incredible amount of misinformation and misunderstanding in both the general public and the mainstream medical establishment regarding the role that red meat, fat, and cholesterol play in the development of cardiovascular disease. Medical dogma has been espousing the evils of red meat, fat, and dietary cholesterol for decades, but the latest scientific research is showing that the truth is not as simple as it was previously made out to be. There is very scanty evidence to support the claims that red meat, fat, and cholesterol cause cardiovascular disease, and even evidence drawing correlations is fairly weak. Here, I take a look at the most modern and up-to-date research regarding the role that diet plays in the development of cardiovascular disease, and discuss what the latest science says about the real contributing factors to heart disease. I will conclude with information on dietary recommendations for reducing one’s risk of developing cardiovascular disease.
"Dude, these are like - literally - the best cookies I've ever had", said my sister, scarfing. She wasn't lying (though she may have been exaggerating just a tad): these cookies are dank diggity. Our household was feeling the need for some heart-warming, belly-filling treats on this snowy Imbolc, and these turned out to be exactly what we needed. It snowed another 6 inches today, it didn't get above 5 degrees F, and the duckies just stayed in their coop and shivered all day. It was time for cookies. No joke.
As usual, I mashed up a few internet recipes together (mostly based on this recipe from Primal Palate) to fit the ingredients that I had in the pantry, and it turned out perfect. Definitely the best grain-free/gluten-free/paleo/refined-sugar-free/dairy-free cookies I've ever had. Next to a regular glutenous, dairy-filled, sugar-laden cookie, I'd best most people wouldn't be able to tell the difference. These were moist and browned very nicely. And the dough... oh the dough. I'm a fiend when it comes to cookie dough, so I chew gum while baking so I don't pick at it. Beware: if you OD on these cookies, this is what happens to you:
As a scientist, there are many things that I must explore in order to discover helpful treatment protocols for complicated problems like CF. Some of these explorations are uncomfortable, or on the fringe of social acceptability. Some of these explorations involve places where the sun don't shine. Oh yes, my friend. I'm going there. Let us discuss that place that our culture chooses not to think about. The "deep space" of our body. The rectum.
It's a pretty useful spot. Located in between the bowel and the anus, it is of course wonderfully useful for expelling feces. But because it is a highly vascularized area of tissue, it is also very useful for absorbing things into the blood. Rectal suppositories of medicine have been used for centuries, and more recently it's come to my attention that essential oils can be administered systemically via this technique.
Mica is a clinical herbalist specializing in cystic fibrosis, severe respiratory diseases, nutrition and digestion, diabetes and blood sugar disregulation, and immune disregulation. Through their own personal experiences with chronic illness, they are passionate about empowering people to take charge of their own health with natural, holistic, and integrative approaches. Please ask questions or share what's worked for you!
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