I’ve got some exciting brainstorming to do with you all today. As many of you generous readers know, I’ve recently acquired some funds to help with my recovery. I’ve been looking into lots of research about treatment that might help and tests that might bring be closer to diagnosis. I’m going to outline treatment I’m doing now, as well as diagnostic tools I’m planning for the next few months.
To explain some of my weakness and lightheadedness, my doctors have hypothesized that I have symptoms of Postural Orthostatic Tachycardia Syndrome. It’s a disorder of the autonomic nervous system where the heart rate and blood pressure become volatile upon standing. I can get a blood test for POTS, which would lead to a diagnosis of dysautonomia, and line me up for this treatment, which has gotten incredible results. It’s proven to help with any disorders of the autonomic nervous system, which would include Fibromyalgia and Chronic Fatigue, as well as POTS.
For now, I take Ashwaghanda to help with energy (especially in the morning). I also take alternating hot and cold showers (it sounds miserable, but helps with circulation). I also do a lot of walks and yoga throughout the day to help with heart rate and other POTS symptoms (these are NOT the only self-treatments I do, just the ones most directly related to POTS symptoms)
In my last post, I mentioned a hydrogen breath test for SIBO (small intestinal bacterial overgrowth) and a food sensitivity test. Since I am so malnourished, these will be huge recovery tools for me. Chronic illness results in a lot of oxidative stress, which almost always leads to some kind of digestive distress. In my case, it’s been theorized that I have a bad case of Leaky Gut Syndrome, in which the lining of the gut becomes damaged, leading to food particles in the blood stream. Food particles outside of the digestive tract are recognized as intruders by white blood cells, and autoimmune symptoms follow. That means, at any time, I can develop allergies to foods (especially the “big eight” allergens) based on the state of my gut and the digestibility of the food. This food sensitivity test, based on IgG and IgA antibodies involved in leaky gut reactions, instead of the traditional IgE allergies.
IgG and IgA food sensitivities are actually very common. If you suffer from any health problems, I would suggest looking into the BioTek testing to help rule out food sensitivities and minimize stress from those immune responses. In addition to those tests, I will use funding to get my feeding tube accurately placed in my digestive tract, and continue feeding tube treatments.
In order to help minimize bad SIBO bacteria and deal with leaky gut symptoms, I am currently following a strict diet, somewhat like the Paleo Autoimmune Protocol– basically a lot of veggies, fruits, and lean meats. I still eat eggs and some nightshade vegetables/starches (potatoes, tomatoes, and bell peppers) but cannot tolerate seeds of any kind (including berries, zucchini, etc.). The idea behind the diet is similar to the original Paleo diet, but it also aims to minimize digestive stress by eliminating foods that exacerbate gut irritation and/or may increase autoimmune symtpoms.
It’s also been suggested that I look into Mitochondrial Disease, as well as hypothyroidism and hyperthyroidism. If any of you have more knowledge about any of those diseases that may help, please share! I’d love to hear any ideas you have about any of the tests and treatments I’ve outlined.