Saturday, January 11, 2014

2014, what's the plan man?

Well I am writing this post as much for me as I am for you. I need to unmuddle all my thoughts so I can work out what to do next, and writing it out is the easiest way for me.

Since Christmas I have been in misery guts mode, moping around, woe is me and all of that. I had some bad news in regards to my current treatment plan for Lyme which probably meant I would not be able to continue down that path. My Dr had an unfortunate run in with the medical board and they banned him from treating and diagnosing Lyme. I do have enough of my current anti biotics to continue on for a few months, but as I said in my previous post I have had some problems with those medications and so I don’t feel comfortable continuing on without Dr support. It’s just too dangerous for me. I do believe that this mess with my Dr will be resolved in some round about way and I will be able to get back onto some form of treatment, but until then I need a plan ….. there must be other things I can work on in the meantime.

Firstly I think I should review facts. The things I know for sure. I had a serious chemical exposure leading up to my illness, this was confirmed by blood tests. These chemicals are fat soluble and so are hard for the body to eliminate. It is very likely these chemicals are still floating around in my organs and tissues. They cause neurological damage.  So I could be doing more work on that.

What else? Um …. I know that when I moved house a year ago I improved significantly very quickly. I am 99% convinced this was due to getting away from mould at the old place. It was severely water damaged and also had a flat tin roof with no ceiling cavity and apparently these are perfect breeding grounds for mould. I also know that I was tested and have a moderate mould allergy. But, I was never tested to see if I actually have mould in my blood etc. maybe I can investigate such a test. I can certainly look at ways to help remove mould and other mycotoxins from the body.

Hmm, that brings me to the next issue. Detox. I have known all along I have major problem with detox and methylation. I really need some proper testing in this area. There is a functional liver test which look at detox. The reason I haven’t had the test is because they give you caffeine and then the test looks to see how well or how fast you liver processes it. Caffeine is a big no no for me because I have POTS. Basically this means if I have caffeine my heart will go seriously bonkers. Also I know that even a tiny amount of caffeine makes me crash badly (a cup of tea for example) .. this in itself suggests my liver struggles to process it, which is exactly the point of the test. I am thinking maybe I just need to risk the heart thing and prepare to spend a week in bed recovering … I probably really need that test.

What else? Gut problems have always been a major player for me. I have had endoscopies, hydrogen breath tests etc and had some success, but some underlying problem is still a mystery. I haven’t had testing for leaky gut and people have been throwing that term at me for years. I can have a test for that.
the only other thing I can really think of is Amino Acids. I have never had these tested and have always suspected something wired going on there. So that is another test I can have.

Ok, so plan is to get more tests and then try and do some work on detox and gut mostly.

I have been sick 4 years now and it’s interesting that whatever this disease is it is still progressing. Symptoms are ever changing but rarely do I actually feel better, just different. I have more energy and muscle strength now, but way more pain and hot flushed/body temperature disegulation. I never knew there were so many different kinds of nausea and fatigue. As a well person you just think there is one type, but as a sick person who sees this everyday you realize there are many many different versions of these common symptoms. Very interesting, but total shit at the same time!

If anyone has experience with any of these tests or issues then your comments would be appreciated :)