For the last ten years or so I've struggled with reactive hypoglycemia related to CFRD (cystic fibrosis-related diabetes). In the last couple of years it has become very difficult to manage. Reactive hypoglycemia is a condition where the blood sugar crashes 1-3 hours after a meal containing carbohydrates, leading to distressing hypoglycemia symptoms such as shakiness, anxiety, weakness, brain fog, fatigue, tachycardia, and in severe cases, unconsciousness or even coma. Reactive hypoglycemia is more common in CFRD than many CF-specialists realize. Despite avoiding simple carbohydrates and adhering to a Paleo-ish diet for many years, my reactive hypoglycemia has only gotten worse. That is, until I started a ketogenic diet in October of 2020. I've made a remarkable improvement in my blood sugar control and I'd like to report my success in detail here.
It's been a long time since I've written something here. The focus of my life has shifted towards writing novels instead of updating this blog, so I apologize if it's been silent around these parts. There's a lot to say, but I'll keep it to just the main points.
I've been on Trikafta for about 11 months now. It has radically changed my life. I am not "done" with CF, but I feel closer to being "cured" of this affliction than I ever thought possible. My gratitude to those who developed this drug is vast and inexpressible. I may live several decades longer. The price tag is unreasonable (about 30 times more than I make in a year) but thank the gods my insurance pays for it! I fervently hope that all qualifying CFers everywhere in the world can gain access to this drug. I do less than half of the breathing treatments I used to and my lung function has gone up about 10%. I no longer rely on antibiotics anymore - I've only had them twice since starting Trikafta (once using IV antibiotics during the "flu-like thing" described below, and once with oral abx in May). I have a taste of what it feels like to be "normal"!
Ok, the Coronavirus (COVID-19) is here, it's pandemic, and it's scary. We take take steps to prevent its spread, boost our immune systems, and help us recover from it if we do catch it. As a CFer I am part of a high-risk population, which means I'm taking this very seriously. Here are some things that I am personally doing. (Disclaimer: this is not medical advice).
1) Social distancing. This means avoiding public places and events whenever possible. Keep 6 feet away from people. Do not interact with people who have traveled in places with outbreaks (including domestic outbreaks). Remember that someone can be carrying the virus for up to 2 weeks and have no idea they are doing so. Avoid non-essential travel. Make your health decisions not just for yourself but also for the highest-risk population. I bought a month's worth of groceries yesterday and am planning to be a hermit for the next several weeks. Yeah, I'm serious.
A few quick updates to share: TauriNAC, colloidal silver, and gout.
It’s been one year since I started using Symdeko in July 2018. Symdeko is Vertex’s second-generation corrector/potentiator drug consisting of two drugs: ivacaftor and tezacaftor. I am a double deltaF508, so I’m the target population for this drug. I thought I should give you a little update on how I think it’s working for me. So here it goes!
I just wanted to post a quick reminder that not all plastics are safe to use. All plastics are derived from fossil fuels, thus may exude toxic chemicals that may be carcinogenic, neurotoxic, hematological, cytogenetic, or have other negative health impacts. And of course, all plastics are bad for the environment. Therefore, reduce your exposure to plastics whenever possible and instead choose glass, metal, or ceramic reusable containers and utensils. Always recycle. And make sure that no matter what plastic you use, avoid exposing it to high heat, such as in microwaves or in dishwashers.
More information on what the plastic numbers mean is here: www.babygreenthumb.com/p-122-safe-plastic-numbers-guide.aspx
More specific to CF, many brands of prescription pancreatic enzymes contain phthalates, a class of plasticizers that are known endocrine disruptors and can cause liver damage. I recommend avoiding enzymes containing phthalates, especially those who have liver issues. Pancreaze is a brand that does not contain phthalates. It's an outrage that phthalates are banned for use in toys and baby products, but not in pharmaceuticals! This must change!
When we have CF or any other condition with significant digestive involvement, bloating and indigestion are common nuisances. Fortunately, digestive complaints are nothing new to the human species, therefore the world's many herbal healing traditions have a huge amount of knowledge to contribute to this issue. Interestingly, digestion is one of the things that I feel conventional medicine has the hardest time understanding and helping with, especially for chronic digestive issues. So in this article I'd like to briefly mention a few herbs and techniques to use to address bloating and indigestion. There are so many herbs that help with digestive issues of all sorts and I couldn't possibly discuss all of them in one article, but I'll touch on a few that I use frequently for myself and my clients.
I love biscuits (that is, American biscuits), but since going gluten-free, and then Paleo, I've had to cut them out. Until now! As usual, I've experimented by combining a few recipes together and came up with a successful way to satisfy my love for the biscuit! I also have a variation for the egg-free people (I am one of those). I found that replacing the eggs with ground flax seeds actually makes them taste better.
Oh, and I call these Paleo(ish) because I usually make them with a little brown rice flour, but you can replace that with tapioca flour instead if you're being strict about it. This recipe is pretty quick and easy, and makes about 10 biscuits.
Now that the colder weather has come upon us in the northern hemisphere, it's time for viruses to make their rounds! Colds and flus can be pretty problematic for people with CF and other respiratory diseases as they can tax our immune systems and cause excessive mucus production, which can then lead to increased vulnerability to bacterial infections and exacerbations.
Although there are very few tools that conventional technomedicine has for fighting viruses like colds and flus, there are many, many medicinal herbs that have antiviral activity and many more that stimulate the immune system to fight the infections ourselves. In this article, I will discuss medicinal herbs and foods that can help us prevent viral infections and hasten our recovery when they do come.
This post is a continuation of my series focusing on individual herbs. In herbalism, we call in-depth documentation of individual herbs "monographs", and we call a compendium of monographs a "materia medica". My personal materia medica is over 300 pages long by now, so I'd like to provide some of the information I've gleaned about specific herbs that I think the CF community will greatly benefit from. So far we've covered astragalus and elecampane. Today I'd like to discuss one of the most revered medicinal herbs in Chinese Medicine: reishi mushroom.
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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