It is not news to anyone who battles Lyme Disease that corruption plagues the diagnosis and treatment of this completely disabling illness. It is also not news to any of us that this corruption forced most patients to go misdiagnosed for years. These years (of misdiagnoses) are critical, for they could have prevented the disease from going into the late-stage form, where it debilitates you and you lie in bed for years, sit in a wheelchair staring at the world wondering what it's like to have a normal life, wait for your mother or friend to make you food or bathe you, have seizures, and need an oxygen tank to breathe. The living dead.
This does not say anything of the hundreds of thousand of dollars each patient may spend on treatment (that is not covered by insurance thanks to the corrupt individuals at the CDC). A Stanford journalist in this article found that a group, consisting of CDC employees, has been setting Lyme disease policy and a national research agenda without public oversight or transparency (again not a big shocker to most reading this). BUT…she explains part of the group's STATED mission has been to run a COVERT "disinformation war" and a "socio-political offensive" to DISCREDIT patients, physicians, and journalists who questioned the group's research and motives.
I'd love to show this to the 12+ doctors who told me I was making up a disease and it was all in my head. I'm sure the countless others with Lyme would love to show this to a few doctors as well.
For now, I am just happy to see a well-written piece exposing the truth, to create more awareness, and hopefully less suffering for those in the Lyme community. Hopefully all of the hard work of the Lyme community towards advocacy will pave the way for better standards around Lyme treatment and diagnosis, and just as importantly, more humane treatment of the people who battle this disease.
This piece would have been very helpful to show to the doctors who misdiagnosed me, or treated me like a crazy person. All of my friends were incredible supports, and took care of my like family. Even my friends' friends reached out to me to support me. So I did not need to convince them what I was going through was real.
However, this article really would have helped to show to many members of my family who did not (and probably still do not) believe that I had late-stage Lyme Disease because of what the CDC said in the past.
What would this have provided? Well..with BELIEF (in the
person who struggles with the disease), comes UNDERSTANDING. With
understanding, comes COMPASSION. With compassion, comes SUPPORT. And
from too many of the emails I get through blog or people I know with Lyme, they
are WITHOUT SUPPORT. They are in debt, unable to care for themselves or
their families because they do not have emotional, physical, or financial
support. For me, that ship has sailed. But let's hope this article
will start to change things even a little bit for those who continue to battle
Lyme.
New post coming in the next week…..Alternative (Holistic) Treatments
for Healing from Lyme Disease
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