Sunday, May 29, 2011

New Goals

The last few months I have been feeling quite directionless in terms of what to do. Looking back over the 18 months since I got sick I have researched my bum off and I have tried quite a few things, 99% of which have ether made me worse or have done nothing other than cost money. I had arrived at that place where you think ‘what’s the point in trying’, but something in my nature just wont let me accept that I have to just be patient and wait for someone else to find the answer. So, once again I have decided that it’s up to me to find a way to feel better, even if it’s a tiny bit better, I need to feel like I am moving forwards not backwards.

I have been considering my symptoms and how my body actually feels and it’s led me investigate the Simplified Yasko Protocol, which works on the Methylation cycle and also possibly anti-viral medications. I have also been thinking more about what my life was like during the year or so before my illness really set in and that has led me to want to investigate toxins such as heavy metals and solvents. I had been working as a graphic designer in a small room next to a solvent poster printer for about 5 years. The printer was supposed to be in it’s own isolated room with extractor fans … but it wasn’t so I consider this to be a very real source of exposure for me.

I spoke to my Dr last Friday and he agreed to order me appropriate tests which would indicate if the Yasko protocol was likely to work for me or not. He also agreed to try and get me proper titre tests for EBV, HV-6 and CMV … something that is near impossible to get in Australia. There is only one lab which does it and they are at the Infectious diseases unit in Victoria. They usually wont agree to run the tests for ME/CFS patients but my Dr said he would try his best!
I am also looking at tests for heavy metals and solvents which are dead expensive but I do feel I need to know for sure. No knowing makes it impossible to move forward so I may as well hand over the money and find out.

Aside from that, my Gastro Dr came and saw me at home this morning which was excellent. He usually doesn’t do home visits so I feel really lucky! He suggested a few blood and urine tests and then possible a CT scan. He said he will organize an ambulance to take me to the hospital just around the corner (I can see it out my window right now) for the scan to try and minimize any ME/CFS crash that the ordeal might cause me. I also asked him about an odd lump I have been able to feel in my stomach, I had thought maybe it was a cyst or tumor. He said it’s my aortic valve and the reason I can feel it is that the muscle around it has wasted …. I am super-model thin these days. Anyway, good news, it’s not a tumor!!!

So, fingers crossed that something in one of these tests will give me some guidance as to which treatment I should try.


  1. Good for you, Lee Lee!!! It sounds like you have a good plan for moving forward. I know sometimes it feels useless, trying all this different stuff, but you are absolutely right - you have to keep moving forward, step by step, one day at a time.

    Don't lose hope!!! It's a challenge for all of us, but at least we have each other to understand what we're going through and root for us! Go, Lee Lee!

    Let us know how the tests go -


  2. wow! this is a very uplifting post. so many things to be pleased about. your dr making house calls, arranging the test and ambulance. plus knowing you have an aortic valve instead of a tumor!
    hate to hear of your exposure to the solvents 5 years before you crashed. i know you know my story so my thinking is spot on with you examining the environmental damage.
    good luck love. hope you get answers. xx

  3. I love that you have a plan Lee Lee. There are times when I just feel too exhausted physically and mentally to try yet another treatment and risk disappointment. I respect that when it happens. But as time passes, I always come up with a new plan. It sounds like we operate the same way. Take good care of yourself. Toni

  4. I'm so excited about the protocol, you must let me know how your testing goes. I think it's important to keep 'doing' something, whether it's research, or your writing, or your artwork. It makes sense to me. xoxo