An “Unknown and Incurable Illness”

An “Unknown and Incurable Illness”

Okay, so this is basically about eight years of my life, but the focus on the data tracking was only about 12 months when it got a bit more serious. So it’s about the diagnosis in 12 months from something which I didn’t really understand.

This is back in 2006/2007, had some unexplained issues. Exercising, tolerance, very tired, Myalgia in my muscle’s and took a break for a year, and fixed it with like a paleo diet and some exercise and stuff.

So by January 2012 I was really doing well. I was you know doing everything I wanted to in my life and I was pretty much past it. It had taken a while but it got there. But then it hit again but a lot worse in June 2012, and many more symptoms came, so it was extremely confusing because it was actually so much going on and so varied I really didn’t know what was going on, and I wasn’t able to follow through with my life or work or anything.

So there was the areas, the brain, nervous system, the gut and so on that it affected and I group it to make it less complicated.

So my approach through this whole thing was first to go conventional, so go to the doctors and get lots of tests done. Nothing really came back; everything was in normal reference range, a little bit out so that didn’t really help much.

What I did find with my CRP was there was two spikes, one in December when I had some strange acute illness, and then just before the chronic illness started as well. So that was some kind of inflammation that was interesting there but still within normal reference range.

With my LDL which I had fortunately been tracking to that also spiked just before the strange bout of illness in December. So that was another little data point there, LDL often rises with infections so that could have been the case.

So the problems were that I’m not really making any progress here, I don’t fit into the template of conventional medicine or doctors, so I kind of got lost and seen 20 doctors and not going anywhere.

Fortunately I had a baseline and it showed that I gotten unhealthier even though I was in normal reference range and it appears that I had some kind of infection.

The next step is that I just decided to track everything I could to ty and get some insights, so lots and lots of labs and lots of tracking. I use that little app there. It was very flexible, it was great and you could track everything including this mess, which was one of my first attempts to try and understand what was going on. So it’s all quants, like inputs, what’s going on in my life and the outputs. And as you can see it’s doesn’t really help much. I had loads of these charts which really didn’t help.

So I took another approach which was journaling and about what was going on in my life and then tracking one symptom, so I split it into four or five symptoms. And then I saw a pattern and in this case coffee or chocolate makes me have energy crash which was a bit strange, a strange fact. So I collected hypothesis like this and eventually I decided to make some experiments; I prioritized this coffee and chocolate experiment. So for a whole month I didn’t have coffee or chocolate and sure enough I wasn’t crashing as before, so that was the way to prove it.

So for a few things I was able to control my symptoms; no glutens, casein, coffee or chocolate helped me a lot, but I wasn’t really making any progress to really find out what was going on with my body. So I decided to take a new approach which was to look for some kind of specialist that was unique to me. I had seen a lot of people about the brain and stuff but that was going nowhere because it’s very hard to go.

But the trembling, I was basically trembling a lot; that’s kind of unique, so I kind of focused on that and saw a specialist in neuromuscular disease. He gave me two tests because of a suspicion, so Epstein Barr virus and one week on a drug to lower my sympathetic system.

They both worked out, so he gave me a diagnosis of Chronic Fatigue Syndrome, which sounds good because you’ve got a diagnosis, but actually it’s really just a group of people with some symptoms that are similar and you have biomarkers which are pretty vague. So it’s also incurable and progressive and it’s not something that you really want to hear.

So my next thing was like okay, I’m going to attack everything and no one has any information how to cure it or what to do about it, so I’m going to read everything and put it all together and came up with this lovely chart. Had some mitochondrial methylation and other stuff that people are trying to get better.

And I did a lot more tests all across the board, and you can see all the red stuff on there and it’s basically everything that was out of range. So I have gone from somewhere where I was in normal reference range for everything and now I’m out of reference range for a lot of things.

Then I just started to try and fix lots of things, because what else do you do if no one knows what the problem is, so you just try to fix that.

So homocysteine is something that’s known towards problems, so I fixed that and there were a bunch of other things that I just worked on to get them optimized, and did feel a bit better. I figured out that you know I had lots of stuff out of normal reference range so it’s not me going crazy. Then as a silver lining I discovered lots of stuff that maybe could have had long term implicationa and I was working on fixing those. But of course I had no court so I couldn’t find a cure and I didn’t really know where I was going still. And I was spending a lot of time in not going very far, so I wasn’t working or anything and this was my full-time job for more or less 18 months or so.

So I decided now what I really wanted was people who had lots of data. You don’t find t in the research really, but there was a few people around like data hoarders, so I decided I would just work with these people who might have some insights and might be able to compare me to something.

Fortunately, here there was a kind of luck and I was reading everything I could. I saw on a blog, Dave Asprey's blog where he talks about coffee and chocolate will give you issues. So since that was a weird symptom you’re kind of making the connection there. And I also found someone who hoards a lot of data who works in that area or mycotoxins and mold, Doctor Richie Schumacher.

So I went through his process because he had the most data basically and it was the best way forward that I could think of at the time.

So these are a load of tests you can do. You can do screening and these are all these kind of tests, and they’re all very specialized tests and not stuff you’ll see normally. And it’s actually a lot of hassle to get these tests because you have to fly to the US, you have to go to special labs you’re actually not very confident in them because you’ve not heard of these tests. So there was some kind of barriers there.

But for me they all struck gold. Basically I was bad across the board, and this gave me very very clear indications that I have exactly what Richie Schumacher was talking about.

So the whole journey wasn’t supposed to be like this, and I was kind of scrambling at each stage but actually achieved each approach which achieved something and eventually got me to where I wanted which was a clear diagnosis so I can know what I’m doing and know where I’m going. And this is one of the markers, visual contrast sensitivity, which shows bio toxins in you. and as you can see I’ve made a lot of progress and I’ve got to control so I’m a normal person from that perspective now.

This has cost me a fair amount of cash so far it’s about $24 - $25,000 and most of this is based on knowledge. It’s really just about getting as much knowledge you can and paying to talk to people who have more knowledge than you.

So what’s great every single weird system I had that first chart everything was explained. You know when you look back on it and you can understand it all when you look through Richie Schumacher’s research and what he’s talking about so that was great.