If you use dietary restriction - please participate. They need to know that drugs aren't the only answer.
Topic 1: Disease symptoms and daily
impacts that matter most to patients
1. Of all the symptoms that you
experience because of your condition, which 1-3
symptoms have the most significant impact on your life?
The depression. The soul-crushing
life-destroying depression. The depression is worse than all the
other symptoms combined. Narcolepsy doesn't kill you, it makes you
want to die.
2. Are there specific
activities that are important to you but that you cannot do
at all or as fully as you would like because of your condition?
I can't eat. That would be a
pleasant experience to have again. I gave up even thinking about
working or having children long ago. Right now I'm just hoping to
live long enough to see you people get this right.
3. How have your symptoms changed
over time?
The symptoms change constantly.
Daily weekly yearly. They fluctuate with age and illness and diet.
Sugar is a trigger. And gluten. And sinusitis. And
periodontitis. And it gets cumulatively worse. To the point it's
unbearable. And then you get DEMENTIA. I have extensively
documented the scientific literature regarding these symptoms and comorbid factors on my websites.
zombieinstitute.net
Topic 2: Patients’ perspectives on
current approaches to treating narcolepsy
1)What
are you currently doing to help treat your condition or its
symptoms?
a) What specific symptoms do your
treatments address?
Gluten-Free
Low-Carb Diet- for sleepiness, depression, cognitive impairment.
Oropharygial
infection prevention- for anxiety, insomnia, obsession.
Caffeine and
Nicotine- because my frontal cortex is fried.
b) How has your treatment regimen changed over time, and why?
This protocol
changes constantly as I learn more about the orexin system and
autoimmune disorders.
I AM ABLE TO NOT USE ANY PRESCRIPTION DRUGS FOR NARCOLEPSY.
a) How well do these therapies improve your ability to do specific activities that are important to you in your daily life?
The Gluten-free low carb diet works
extremely well on the Hyperinsulinemia related symptoms. I no longer have
sleep attacks, daytime sleepiness, depression or cognitive
impairment.
The antimicrobial prophylaxis
addresses the autoimmune effects of Streptococcal infection which is The
Primary Cause of Narcolepsy. This is less effective as I have
been chronically infected for my entire life without proper
diagnosis.
The caffeine and nicotine make my research and thus my continuing existence possible.
b) How well have these treatments
worked for you as your condition has changed over time?
Way better than
the drugs my doctor prescribed. It gave me my life back.
3. What are the most significant
downsides to your current
treatments, and how do they affect your daily life?
Downsides? Metabolic dysfunction and recurring infections are truly annoying, but
let's start with the fact that due to the insidious influence of the drug companies in the sleep medicine industry- no “specialists” seem to be
aware of the basic mechanisms of Narcolepsy. They only offer stimulant drugs. I can't talk to a doctor about this.
That really interferes with my health care.
My daily life now revolves around finding and disseminating this crucial information to other narcoleptics.
My daily life now revolves around finding and disseminating this crucial information to other narcoleptics.
4. Assuming there is no complete cure
for your condition, what specific things would you look for in an
ideal treatment for your condition?
Don't assume
there's no cure. We've already found some effective treatments, and we're working on preventing it altogether. Us.
The Narcoleptic Patient Researchers who truly know what's at stake.
In the
meantime- we really could use some proper Diet Information,
Metformin and Antibiotics. We really need to be able to think. Thanks.
