Thanks Pete! You've done a great job with your estate plan. My recent issues lit a fire under my butt. Seeing an attorney today.
Type: Posts; User: crowneagle
Thanks Pete! You've done a great job with your estate plan. My recent issues lit a fire under my butt. Seeing an attorney today.
I'm a little panic stricken, sorting out my estate. After all, I'm an infection and relapse away from disaster. Above all, we want to avoid probate, where all kinds of shady characters can put a...
Mycobacterium Avium Complex, aka MAC, is a family of rare bacterial infections weggies may get from the environment, even from their showerhead. After a long process of culturing my sputum, it...
Thanks Pete. It's definitely not something I would want to go through again. I walk around my house, spraying Lysol on everything I touch. I'm in anti-infection mode.
I never experienced a true weggie war, until now and like any war, you have to have a war correspondent. I kept a diary of the entire three month fiasco, at least during the parts I was conscious.
...
Not sure if this news has already been posted but Patti Peterson Sullivan recently passed away. I just talked to her husband and he told me she had contracted Covid and her lungs couldn't handle the...
The threat of being on preds for the rest of my life is highly motivating. RTX has a hard time crossing my blood brain barrier. It's like Arnold Schwarzenegger trying to enter your home through the...
I recently got turned down for a second generation B cell depleting drug. It hasn't been officially approved for WG and the subjects in the one small study developed an allergic reaction to RTX....
Thank you Pete. Have a great holiday!
I just had a great meeting with my vasculitis doctor. Time has been running out for me for a long time. I barely made it to the third month after my latest RTX infusion. Three rounds of Solumedrol...
This is shocking! They may be hurting me more than helping me.
There are two kinds of weggies in this world. Weggies that have infusion reactions to RTX and those who don't. Likewise, these same...
The way the story goes, the pharmaceutical industry couldn't patent pregnenolone, because it was a natural substance. Their response to this little problem was to develop glucocorticoids.
...
I pressed some kind of wrong button and a thread I started got sent out with a mistake in the title. Can't find any way of deleting that thread or even editing the title. Kind of wanted to start all...
T-regs regulate our immune system to prevent out of control immune activation. "FOXP3+ regulatory T (Treg) cells are critical in maintaining immune tolerance and homeostasis of the immune system."
...
True story!
During my recent relapse, my rheumy was testing my Creatine Kinase. I hadn't had it tested since before being diagnosed. My CK levels were low, but I thought it was from losing so...
Spent seven hours in an emergency room, with what I originally thought was a swollen gland, from a recent low lymphocyte count, after four infusions of Solumedrol/RTX. Ended up being a blockage in my...
Mayo Clinic flat out recommends not taking melatonin with an autoimmune disease. Since they are the number 1 hospital in the world, I put a lot of stock in their opinion.
"Melatonin can stimulate...
I was taking 5-7mg's of the cheapo Walmart melatonin, until the VA gave me 5mg of prescription strength melatonin. Normally, our bodies produce much less than that. And you're very welcome. I usually...
I'm relapsing badly this weekend. A couple of months ago, a doctor prescribed prescription strength melatonin for my sleep disorder. It's been down hill ever since. Seeing my neurologist Tuesday,...
Colitis Associated With Rituximab in 21 Patients at a Tertiary Center"Rituximab has been associated with numerous adverse gastrointestinal effects including diarrhea and bowel perforation, and recent...
Blood levels of SOD, an antioxidant enzyme, could mark AAV activity
https://ancavasculitisnews.com/news/sod-blood-levels-mark-anca-associated-vasculitis-activity/
Genetically, I don't make enough...
Case in Point – Eggs
Linoleic Acid is an omega-6 fatty acid.
"Testing by Pennsylvania State University and the USDA showed pastured eggs contain 2 times the long-chain Omega 3s, 2.5 times...
54% of the omega-6 fatty acids in soybean oil are in the form of Linoleic Acid. In the body fat tissues, Linoleic Acid is converted to Arachidonic Acid. Since 1955, Linoleic Acid in human adipose...
Complement Factor H helps regulate the complement alternative pathway. Genetically, I have lower levels of Factor H, which makes my complement system become dysregulated and activated. Keeping up...
I'll pop in every now and then. Nice to connect again. Hope everything is going well. I'm enjoying my slower pace of life. :cool1: