Sunday, May 29, 2011
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.
Thursday, May 19, 2011
THIS IS A RE-POST FROM MY FRIEND BARRY'S BLOG. His site is here. I am re-posting his blog post because he said exactly what i was thinking ... so, here it is:
Something is bothering me and I want to share it.
As those with chronic illnesses who read this will no doubt be aware, the Whittemore Petersen Institute (WPI) is shortlisted for a Chase Community Giving charity award. That award will be based on how many votes the WPI secures via Facebook and the amount can be up to HALF A MILLION DOLLARS.
Let's go back a step though. In becoming part of the online community of people with ME or CFS or whatever we define it as, I see active communities running into the thousands in terms of numbers of members. One desire seems to unite us - a desire for robust biomedical research to determine why we are sick and how we can be effectively treated/cured.
I'm sure you know where I'm headed with this post. Along comes a financial institution who is prepared to give up to HALF A MILLION DOLLARS to fund this research. And all we have to do is click a few buttons on Facebook and vote.
So here's what bothers me. The first round saw the WPI collect a decent enough number of votes but a tiny amount when you consider how many people are active on Facebook and have a vested interest in ME/CFS and in helping find a cure. The second round started today and we are struggling to stay in the Top 10. We are being beaten by a marching band!
It's all well and good us trying to gain votes from our friends etc but, really, votes purely from that online community I keep mentioning should see us storm this contest and bank HALF A MILLION DOLLARS.
I know I'm preaching and I know we are all sick but really there can be no second chance for something like this. We will regret it for years if we do not squeeze every cent out of this charity award. HALF A MILLION DOLLARS (last time, promise).
Anyone who reads this, the message is simple. Vote. Please. This isn't X Factor or American Idol and this isn't some lame popularity contest. This is the potential for people to get their lives back.
Full instructions below. Oh, and please don't let the 'unsecure connection' warning put you off. Nobody is going to steal your identity during the 2 minutes you use a Facebook app to vote.
1. From your Facebook page, go to Chase Community Giving:
2. "Like" Chase Community Giving by clicking on the "Like" button.
3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.
4. Cast your vote for WPI by clicking the "Vote Now!" button.
CHASE COMMUNITY GIVING: BIG IDEA
The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and autism, have too few medical solutions. WPI continues to make significant strides through the work of their innovative research program. Translating novel research into effective patient treatments for millions around the world will begin with the opening of their 10,000 sq. ft. medical facility. Here they will engage in revealing clinical trials and provide onsite care to those who are unable to afford care. The WPI require funding for initial expenses and to establish a patient fund. WPI’s commitment to discovery has already inspired much hope worldwide. Now it is time to put hope into action by offering meaningful patient care to these underserved populations
Posted by Lee Lee at 3:55 PM
Wednesday, May 4, 2011
12th May is International Awareness day for ME/CFS.
I have been severely ill with Chronic Fatigue Syndrome since October 2009 and to be blunt about it, I HAVE HAD ABOUT ALL I CAN TAKE !!!!!! There are an estimated 17 million people worldwide suffering with this illness, some are still able to continue with life to a lesser degree and others like me are totally housebound or even totally bedridden. I have lost my job, my friends, any remnants of a social life, my independence, self respect and I will even have to move house shortly. Astonishing as it sounds I am one of the lucky ones because I have a government who will allow me disability support and I have only been ill a short time, others I know have been suffering for 30 years or more. This suffering needs to stop and thankfully progress is finally being made by a private research facility in Reno Nevada. The Whittemore Peterson Institute have made real breakthroughs in the science behind the illness but being a private lab they need community support to continue their research. My life and 17 millions other lives are relying on their continued efforts. We cannot wait forever, our life expectancy is 25 years less than an average healthy persons. For the month of May we are all banding together in an attempt to raise more money for the WPI. I know many of you are struggling financially yourselves and if this is the case for you then please don’t feel obligated to reach into your pocket, however, if you are in a position to spare a few $$$ then there are two ways you can help me and others like me.
Firstly you can purchase a gift card or print from the ‘Art 4 XMRV’ project I have set up. All of the artwork has been created by talented people who are suffering with ME/CFS and 100% of the profits will be forwarded onto the Whittemore Peterson Institute. If this interests you then please visit the shop here - http://www.redbubble.com/people/art4xmrv
If you aren’t really interested in making a purchase but you’d still like to help you can make a donation directly to the WPI by going to their website here - http://www.wpinstitute.org/help/help_donation.html (please mention in the comments box that you came via 'Art 4 XMRV' so they know how you found them)
A few $$$ really can make a difference, please don’t be complacent, if you are in a position to help then PLEASE step up to the plate and do so. Any donation will be GREATLY appreciated !!
Thanks for reading :-)