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Sep 8, 2016 · Diagnosed with dysautonomia in 2011. Looking for treatment options. in Autoimmune Diseases

That is a good question. All of us have different symptoms with minor similarities. What made us figure it out, though, is that many of the stressors that trigger our symptoms are the same. Also, the treatments for the stress response systems are helping both my son and daughter, even though they have different symptoms. The only thing we know genetically right now is that our son (17) has a gene mutation causing his cells to have a methylation dysfunction. In my mind and with my knowledge, this is plenty of a reason for his body to go into a state of emergency (dysautonomia) over the years. Nothing is able to get through the cell walls, toxins are stuck inside his cells, mitochondria are distressed, and his nutrients (including sugar) are just floating around in his body. (His urine had hundreds of tiny particles floating around in it — likely the undigested food.) He also cannot eat anything at all that calls for an insulin response (sugar, fruit, some vegetables, some nuts, any grains, even Vitamin B, etc.). Anytime insulin is called for, he has a massive, massive reaction that lasts for weeks (depending on how much glucose was present). I am the same way with sugar, but my reactions are much more acute. Complicating my son’s illness is the fact that he also has a vestibular dysfunction (aggravation the autonomic nervous system) AND unbelievably, has neuro autoimmunity, attacking the same area of the brain (frontal lobe). His strep levels in his body are so high that his doctor has diagnosed him more specifically with PANDAS. This is a very complex case and thankfully, we have found most of the pieces to the puzzle (though we are not sure how they all fit together yet). Thank you for letting me join in on the discussion. You have no idea what a relief it is to talk with other people who understand.

Sep 5, 2016 · Diagnosed with dysautonomia in 2011. Looking for treatment options. in Autoimmune Diseases

Thanks to Colleen for inviting me in on this group. My son, daughter, and I all suffer from dysautonomia, and all of our symptoms are quite different. I was surprised to discover we all had the same underlying disorder. Clearly genetic in our case, but I have done lots and lots of research, and it seems that dysautonomia manifests differently in each person affected. We have seen numerous doctors and have done endless testing. We have finally come up with some pieces to the puzzle (though we are not sure yet how they all fit together).

Sep 5, 2016 · Dysautonomia/Syncope in Brain & Nervous System

You are welcome! Glad to connect with people. Our journey has been going on many years now, and thankfully, we have made huge progress, so I thought I would share with @haylie’smom, because things sounded so familiar. I have hundreds of answers for my family now that I only had frustrations and questions about four years ago. It has been a harrowing time for us, but we are in a much better place now. Do you know how I can connect with @hayle’smom? It’s been over four years since she posted, so I would be interested in finding out if she has any answers, too! Maybe we can put our information/heads together. (By the way, I stumbled upon this discussion by googling “dysautonomia and blood sugar swings.”)

Sep 3, 2016 · Dysautonomia/Syncope in Brain & Nervous System

Hi, I know it is 4 1/2 years later, but my son, daughter, and I are all severely affected by this terrible disorder, so I though I would go ahead and connect with you, if you are still active. I have spent the last several years caring for them as my full-time job and doing tremendous research. We have made HUGE progress, thankfully, with both of my kids, and I am stable at this time. Would love to share with you if you would like.