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what's it like to feel certain that
you're sick
really truly sick and have doctors tell
you it's all in your mind I woke up
pitching when I first was looking at my
source I could see like projections
coming out of a little bit of color like
super healthy I'm sick with this disease
it's called for Jones and it's really
weird
no one believes that more Jalen's a
mysterious infection that according to
some researchers affects tens of
thousands of Americans it's symptoms are
strange and otherworldly enormous skin
lesions with multicolored fibers of red
and blue and green growing out of foam I
remember when I first heard about more
challenge but I didn't believe it I
didn't want to have something
controversial I wanted to have something
that has existed before has an answer
but all my searches kept coming right
back to Morgellons
but here's the thing according to the
Centers for Disease Control and
Prevention more gel ins does not exist
many doctors believe that more downs is
a delusional disorder that those skin
lesions like the ones that katie has are
self-inflicted doctors in the beginning
thought that I probably had a mental
problem when I showed up they all
thought I was not and they would
instantly just be in the role of we
gonna third we can help I guess the
tension and all of this is that where
John's doesn't officially exist that the
CDC says it doesn't exist I think it
makes a lot of us a lot more sick the
anger of being categorized like that and
then neglected one doctor who does treat
hundreds of more John's patients is dr.
Rafael Stricker who depending on your
view of Morgellons can be one of several
things
a savior a medical pioneer or a quack
doctor Stricker says more Jones is
linked to Lyme disease
so these fibers that are seen in more
Gelinas patients they're not some worms
or you know or lint or you know
something from outer space what they are
is they're fibers that are produced by
the patient's own cells and for some
reason these patients with Lyme disease
over produce these fibers and then they
come up through the skin and cause these
weird lesions so the bacteria that
causes Lyme is called a spirochete
transmitted by the bite of a tick we've
looked at a number of more John's
patients the last study I think had 25
patients that had skin lesions with
fibers all of the patients essentially
had infection with the line bacteria but
in a 2012 study the CDC reported that
there was no common underlying medical
condition for more John symptoms that
the fibers found on patients skin were
mostly bits of cotton based on that
though they've been very skeptical about
more gel ends doctor stickers as a CDC
study was flawed in part because
research subjects didn't have to have
more downs fibers in their skin at the
actual time of the study so maybe they
didn't have more downs at all
dermatologists who should deal with it
have been told well this isn't a real
disease and they're crazy and they're
illusional and that's all it is
basically what we've been doing is
showing that that's not true that these
are people who have a real disease
maryanne middle vein is a veterinary
micro biologist by training she conducts
research on more drones with dr.
Stricker some of their work is funded by
a more dellons advocacy group called the
Charles E Holmen foundation I actually
showed that the lesions contained the
line bacteria the way we determine if a
person has more jealous or not is we
look for the presence of cutaneous
filaments that are in or embedded in the
skin I can see like some black strands
but couldn't get off you yes I couldn't
have come off the couch absolutely can
and I think that adds to the confucian
it's only after a long time you can see
it clearly coming out of the body I
never brought in any samples I learned
quickly not to show any pictures either
to doctors yes pretty much if you bring
anything in you can expect a delusional
parasitosis diagnosis online more gel
ins becomes a kind of subculture and
katie has found friends there two of
them decided to come visit her in
Seattle do you want to try this new
active lesion right here on my face she
tore that off though they'd probably be
because it's not really open
with the scope you can see them and but
you can feel like when they're swimming
across my eye and then it gets in the
corner and you can pull this thing out
of your eyes I have those a lot
yet skeptical doctors argue that more
jallands is a psychiatric condition they
often diagnosed patients with what they
call delusional parasitosis practically
every practice in dermatologists will
see Magellan's disease soonerlater the
most of the patients who have actually
with Morgellons are women they are clean
they don't have any substance abuse
problem and out of nowhere they start
feeling crawling biting stinging
sensations and they start becoming very
much worried about parasites many people
with Morgellons go to the dermatologist
they don't want to argue with the
patient it's very unpleasant against
what the patient's saying so oftentimes
one way to just take care of the
situation in a way that the patients are
not unhappy no argument and they will go
home quickly and happily is to give them
antibiotic those measures practically
never be to a cure it is commonly done I
hate to say in a way to get rid of the
patient from the office sometimes dr.
who gives these patients a prescription
for an anti-psychotic medication called
PEM aside and sends them on their way
ideally this a medication called P
moseyed it's actually a medicine for
Tourette's syndrome a P Mo's I works
very well for these symptoms and often
lead to great improve any symptom if not
cure
so all these things are the herbal
supplements antibiotics and everything
that I've kind of collected over three
and a half years like vitamin C CBD
tincture
these guys here's another topical I love
but it's for dogs and that's kind of
controversial this is actually dewormer
what I buy from the farm store none of
this is the cure over the past three and
a half years I would imagine that I've
spent at least fifty grand
do you ever feel like we're just like
warriors on the battlefield like
crawling through we're like silver when
you see everybody in the groups like yes
I have you're like everybody has the
same thing you get to see everybody's
pictures and you start talking and
opening up and then going down the
rabbit hole exactly you get your
microscope you get your you know and
it's examine things you have samples
like you know I don't can't say I'm just
pink spit I have like four years like
this is what I've 2014 it feels like
2008 feet whatever it takes your looks
it takes your your your life your wages
your quality time with you your family
and your daughter and then to not have
it recognized like if you have cancer if
you have AIDS or you have you know
anything else it's like well this is
what you have but no with this [ __ ] it's
like I can't help you now this looks
like hair from my head it does but it's
not how do you know you just know yeah a
huge wad will come out in in a clump and
then you get the pressure relieved and
the pain stops here's another one of
those white things here's a red one you
like this but these all came from scenes
just please it looks like lint you know
you're to convince me and I can feel in
you that you can told people these same
things before and believe more Jones is
a disease it doesn't officially exist
and so there aren't officially doctors
do you think that leaves space for
people to be like taken advantage of
there's so many different ways to you
know that people choose to go about it
and they are getting ripped off many of
my friends have traveled to other
countries other states some of them have
experienced some really crazy things
like hooking them up to a big battery
scanning their bodies and that not only
rips them off when they have nothing
left but then they get home and it's one
more fail you know it's one more fail
and that has happened to my some of my
friends who have ultimately killed
themselves my day with Katie and her
friends leaves me feeling uncertain and
unsettled what I do know is that all the
women are suffering it really erodes
your will to want to live because it's
such a suffering and all-encompassing
type of suffering and that's why people
suicide they get tired in the fight
today when we were leaving Katie's Joan
one of Katie's friends handed me this
folio who says Magellan's on it in here
she's given us samples of peace fibers a
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long black fiber of some sort I really
don't know what to say about this stuff
so I met with a more Gelinas patient
an envelope of samples and was hoping to
show them to you to get a sense of
whether they they are real of what they
are sure here's here's one sample it's
from like a decade ago this looks like
just to be care to look like they
probably were stuck has contaminants on
a lesion though do you feel like you
want to yes yes and I get job
I give lectures on that they might think
mistake the filament for a parasite they
might pick up environmental contaminants
they really have the condition they
really have the filaments and yet they
become so obsessed about it that they
begin to think everything's related to
it as a scientist when you look at that
slide and you put it in the microscope
and you see that beautiful spiral keep
there that is not supposed to exist and
it's supposed to be delusional mental
illness you can't help but get very
excited by that Katie says she tested
negative for Lyme but positive for a
similar strain of the bacteria she's now
taking antibiotics on and off she says
it helps someone I use a far infrared
sauna at first I thought it was the
craziest looking thing I'd ever seen I
did start to feel better when I was
doing it every day and I feel more
comfortable in my skin now which is so
ironic but I trust myself more like I
knew something was wrong and I was right
so it seems wild and establishment
research is firmly against it but more
Jones advocates will tell you that the
medical community has a long history of
disbelieve in real illnesses and
neglecting real pain especially when it
disproportionately affects women like
Magellan's and so patients still seek
their own answers when doctors say it's
all in your mind
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you