Friday, May 13, 2016

Could've, Would've, Should've

Fecal transplants. William gagged and held out his hands to ward me off. He didn't want to hear about it. He's a bit squeamish. "Seriously, people eat other people's poop??"

The image that portrays is not quite that literal, but yeah. Over the past two and a half years, my study of autoimmune diseases keeps bringing me around to the gut. Although autoimmune diseases have a genetic component (you have to be prone to get it), there has to be a process that brings it on and perhaps a trigger. In looking for high level and interesting biology courses to challenge William, we both started (concurrently, but independently) taking a Coursera course on the human gut microbiome. There it was in black and white  in a video segment: current research shows that "leaky gut" may be a leading cause.

May be, could be, in some people....We don't have time to wait. There could be a vaccine, there could be beta cell implants, there could be a bionic pancreas. All that takes time and the bureaucracy that is the FDA. In the meantime, William and I need to keep William as healthy as possible so that when (and notice I say when) a cure becomes available, he will be eligible and suffer no long term complications.

So, no, I'm not encapsulating microbes from a questionable source to feed to him. Some research shows that inoculation from a healthy gut into a struggling one can have positive effects. We aren't doing that just yet, but I thought I would use my blog to chronicle some of the things I'm learning and we are trying. It can be a record of sorts for us.

I do believe that autoimmune begins in the gut. As a small child, William began having stomach aches, headaches, light sensitivity and skin issues. Doctors dismissed all symptoms with a wave of the hand. "He is constipated, he needs more fruit, use this lotion, ..." No real answers. With an over-active immune system, he had to have his adenoids out because they were filling his ears with fluid and his eyes itched constantly. The immune system didn't stop there though and went looking for something to kill.

So if I could go back in time, which I can't, what would I have tried? Note, I am  not saying how could I have prevented it nor do I blame myself as there is no research to prove any of this, but if I could go back in time here is what I would have done.

  • No fast food or processed foods
  • Remove gluten and non-fermented dairy from the diet (we did do this, he was lactose intolerant)
  • Have labs run to determine vitamin deficiencies
  • Take a rotation of probiotics
  • Fish oil, coconut or MCT oil
Pediatricians treat symptoms and rarely if ever run all the labs that showed he was anemic, low Vitamin D levels, had a zinc/copper imbalance, was hypothyroid, and had a rising A1C (blood glucose average over three months). Endocrinologists will prescribe the insulin and the thyroid medications which chase after the fact you have an autoimmune disease, but not what to keep it from progressing. 

I'm excited to see the research into the gut microbiome, but once the damage occurs and the adaptive immune system makes a mistake and goes after the wrong thing, mistaking your own cells for a "bad" microbe, how does one retrain/reset the immune system? We are trying a course of LDN, Low Dose Naltrextone. Now if you are lucky, you've never heard of it. At a much higher dose (50 mg), it is used to treat narcotics addiction. At a very low dose (up to 4 mg), it is being used to calm the immune system and reduce antibodies. William was prescribed LDN to attempt to lower thyroid antibodies. We will test for this in several weeks.

I will write more about LDN tomorrow.

Disclaimer; Nothing you read on my blog is intended as medical advice. If you have questions about your medical care, please consult a doctor, I am not a medical professional and do not offer this as advice but only my own thoughts for our own situation. 

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