WHAT IS #Fix Chronic Lyme?
It’s a charity run to raise money for research into Chronic Lyme Disease. Chronic Lyme is a multi-system disease spread by ticks. There’s no cure yet and a lot of people are misdiagnosed for years because the illness is hard to identify due to lack of medical knowledge and accurate tests.
The lack of medical knowledge also entails that the illness is not yet legally recognised, meaning doctors get prosecuted for helping sick people and that expensive treatments and tests are not refunded, so that patients have to pay up themselves.
Fundamental research into better testing methods and medication is
urgently needed. Especially when you know that when Lyme is detected
at a very early stage, it can actually be treated successfully with
antibiotics, but when it stays undiagnosed for years, it becomes an
extremely resilient, even life threatening infection.
That's why
the money will be donated to Himmunitas. This medical facility in
Brussels has been helping many patients from all over Europe. In 2015
they will collaborate on four research projects trying to find more
acurate testing methods and better medication. These projects will
benefit Chronic Lyme patients in Belgium and all over Europe in a
short period of time.
At the Antwerp 10 Miles & Marathon on April 26th 2015, we’ll be running different distances (5k, 10 miles, marathon) to raise awareness for Chronic Lyme and collect money for research into this spreading disease.
You can help by running along or by donating money here. Please contact us via Fix Chronic Lyme Facebook page or fixchroniclyme@gmail.com for more information if you’d like to join us at the Antwerp 10 Miles.
Dealing with Chronic Lyme is an immense struggle not only physically,
but also socially and financially. Let’s try to make it a little
easier on everyone who is still ill and all the ones about to get
their diagnosis.
Please donate to fund the necessary research or
run along!!
Our goal is to raise 100.000 euro, sounds like a lot but developping
a new drug costs millions and there's no shame in dreaming BIG when it
comes to a good cause :)
Thank you very much for your help!
This fundraiser is supported by TIME FOR LYME BE/NL and
Below you will find more information on why this fundraiser is
so important, a few links where you can find more information on
Chronic Lyme and a personal story.
WHY A FUNDRAISER FOR CHRONIC LYME?
Three reasons:
1. THERE IS NO CURE YET!!! Because there has been no
sufficient research into Chronic or Late Stage Lyme. The mechanisms of
this illness are very complex and not a lot is known at the moment.
Doctors have to experiment with treatments like long-term
(intravenous) antibiotics to help patients get better. For quite a few
patients these heavy treatments lead to good results but it’s not
completely clear why exactly. For some this treatment doesn’t work and
very few make a full recovery.
This is why we need more
fundamental and applied research, to understand the illness, to
develop better tests and proper treatments, and maybe even a vaccine
for this horrendously debilitating illness.
2. THE ILLNESS NEEDS TO BE RECOGNISED BY GOVERNMENTS AND
OFFICAL HEALTH ASSOCIATIONS so that patients can get proper
treatment and treatments can be refunded. At the moment Chronic Lyme
is not recognised and patients have to fund the year-long treatments
themselves which costs them tens of thousands of euro. An average
treatment may easily cost 5.000 to 8.000 € a year. Over the years such
treatment may cost 25.000 to 40.000 € and these are not the worst
cases. Even after all these expenses a full cure is far from
guaranteed. More tests and treatments will be necessary. This is not
only the case in Belgium but in most countries where Chronic Lyme is
becoming a huge problem.
Only in December 2014 Canada and the US
passed a law that doctors who treat Chronic Lyme patients with
long-term antibiotics will not be prosecuted… There’s still a long way
to go…
3. PEOPLE NEED TO KNOW ABOUT CHRONIC LYME. Some people know about Lyme in its acute form, but not a lot of people know about the chronic version. Even worse, not a lot of doctors know about Chronic Lyme. The symptoms are so diverse and tests are not accurate enough which leads to patients being misdiagnosed for years before finally getting the right answers. We need to speak up and make people and health professionals aware of this problem so people get diagnosed quicker which increases their chances of recovery tremendously.
WHY DONATING TO HIMMUNITAS?
Himmunitas is one of the very few medical practices in Belgium that
takes this illness seriously. They try their best with the little
knowledge there is and with health officials breathing down their
necks, to stabilise the patients until a proper cure has been found.
People from all over Europe come to this medical facility in
Brussels to be treated.
In 2015 Himmunitas will collaborate on
four research projects regarding Chronic Lyme to develop better
testing methods, more effective medication and unravel the mystery of
this multi-system disease.
As Himmunitas has been helping us,
it’s time for us to support Himmunitas and at the same time we’ll be
helping all the other patients that are about to be diagnosed.
MORE INFORMATION ON CHRONIC LYME
Dutch
www.timeforlyme.eu
English
www.ilads.org
www.tbdalliance.org
Documentaries
Under Our Skin
LymeLight: the story of professional freeskier
Angeli VanLaanen
A PERSONAL STORY – WHY I’M RUNNING…
I’m a chronic Lyme patient. I fell ill in February 2008 at the age of
29. I tried to hold down my job as long as possible but I had to stop
working in the summer of 2008. I was totally exhausted and just good
enough to lie on the sofa for most of the day and go to bed at night.
Some patients are even worse off: they cannot support daylight or the
slightest sound, are in immense pain, have seizures and some are even
paralysed.
Getting the right diagnosis wasn’t easy. The first
two years I was treated for serious anemia. When that problem was
finally resolved around April 2010 but symptoms persisted, I was told
I was physically completely healthy and that I should see a
psychiatrist, do a mindfulness course and make sure I slept better to
deal with my issues. Besides saying I had a psychiatrical problem they
also mentioned the diagnoses Chronic Fatigue Syndrome and Chronic
Hyperventilation.
Finally, in November 2012 I was diagnosed with
Chronic Lyme. A few weeks earlier though, the medical authorities had
decided that I wasn’t ill at all and that I had to resume full-time
employment. As this illness is not recognised it didn’t make a
difference to their decision. That was a serious blow as I hardly
could stay awake during the day. I found a job, learned to drink
coffee to keep me awake and started the 16 month long antibiotics
treatment a few months later. Needless to say it was a gruelling time.
All in all the last 7 years have been a constant struggle not
only on a physical level but also mentally, socially and financially.
It’s been really tough, and it still isn’t easy but I am one of the
lucky ones. I have help to pay for all the expensive tests and
treatments, parents who are very supportive and great friends who help
me maintain some form of social life. Even being in this ‘lucky’
position it was and still is extremely hard especially because there’s
no proper treatment. Looking for a cure is a process of trial and
error with no definite end in sight.
I pledged to myself that from the moment I would be feeling a little better I was going to do something for other Chronic Lyme patients and we’re at that point! ☺ Since my antibiotics treatment of 16 months ended this summer my energy levels have gone up a little. Treatment of Chronic Lyme with long-term antibiotics is very controversial and a lot of professionals are against it. But that’s why we urgently need more money for research. I am far from 100% yet, maybe at about 60% on a good day, but I started running again (!), at the pace of a snail but hey, I’m running. So I set myself a goal that in April 2015 I will run the 5k short run at the Antwerp 10 Miles to raise awareness and money for Chronic Lyme Research. I’m not sure I will make it though. At the moment my longest stretch of running is 7 min and the training is really starting to drain my energy but we’ll see. If I can’t run all the way, I’ll just walk to reach my goal!
I also want to stress that Chronic Lyme patients are not miserable, lazy people, we might look that way when presented in the media but it’s because we are drained from energy. We are indeed very sick even if you don’t see it physically on the outside. But please don’t let the cover of the book fool you. All these people are fighting an epic battle, not only against the infections in their body but also against the lack of knowledge not only of ordinary people like you and me, but also of the health professionals and medical authorities!
