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1
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* *
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- I didn't know
what was happening to me.
3
00:00:24,433 --> 00:00:28,300
I thought I was gonna die.
4
00:00:28,300 --> 00:00:31,900
- He kept saying to us,
"I have no idea what this is.
5
00:00:35,333 --> 00:00:37,067
- "I've never seen this before.
6
00:00:37,067 --> 00:00:39,033
I've never heard
of this before."
7
00:00:40,933 --> 00:00:42,500
- "We don't know
what's wrong with you."
8
00:00:52,733 --> 00:00:57,167
- Dark and not seeing
any light of recovery.
9
00:01:07,133 --> 00:01:09,800
- We have, I think,
a horrible epidemic.
10
00:01:12,700 --> 00:01:14,067
When enough people are sick,
11
00:01:14,067 --> 00:01:16,367
it's gonna be,
"Who's answering for this?
12
00:01:16,367 --> 00:01:18,067
What did you know?
When did you know it?"
13
00:01:22,500 --> 00:01:25,733
- What kind of a breakdown
or series of breakdowns
14
00:01:25,733 --> 00:01:28,300
in the medical system
can lead to a setting
15
00:01:28,300 --> 00:01:29,700
where you have an illness
16
00:01:29,700 --> 00:01:32,900
and people walking into
their average doctors' offices
17
00:01:32,900 --> 00:01:36,767
may or may not be likely to get
effective treatment for it?
18
00:01:40,833 --> 00:01:43,133
- I would never,
never have thought
19
00:01:43,133 --> 00:01:46,633
that a bacteriological infection
producing the havoc
20
00:01:46,633 --> 00:01:49,867
that it produces
can become so politicized.
21
00:01:49,867 --> 00:01:53,300
The truth can be
so brutally distorted.
22
00:01:56,967 --> 00:01:58,933
- When we moved
to where we are now,
23
00:01:58,933 --> 00:02:00,800
the people we bought
the house from said to us,
24
00:02:00,800 --> 00:02:02,133
"Be careful of Lyme disease."
25
00:02:02,133 --> 00:02:05,067
And then we met
all the neighbors.
26
00:02:05,067 --> 00:02:07,833
Every house, for sure,
had at least one case,
27
00:02:07,833 --> 00:02:09,067
and many houses had--
28
00:02:09,067 --> 00:02:12,067
all of the family
had been infected.
29
00:02:12,067 --> 00:02:13,500
All of them were sick.
30
00:02:41,733 --> 00:02:49,200
- Are you able
to stand up, honey?
31
00:02:49,200 --> 00:02:50,533
All right,
I'm gonna shut this off
32
00:02:50,533 --> 00:02:52,133
so we can take you
back in the house, okay?
33
00:02:52,133 --> 00:02:53,667
- Okay. Okay.
34
00:03:05,833 --> 00:03:07,667
- All the articles
basically state
35
00:03:07,667 --> 00:03:09,633
that this really isn't
that big of an epidemic
36
00:03:09,633 --> 00:03:12,533
and that it doesn't really
do that much to your body,
37
00:03:12,533 --> 00:03:14,500
and that it's just
a very easy, quick cure,
38
00:03:14,500 --> 00:03:17,467
a couple weeks of antibiotics,
and you're good to go.
39
00:03:17,467 --> 00:03:19,867
Obviously, those people haven't
actually seen what it does.
40
00:03:23,667 --> 00:03:29,933
- Pain, pain, pain,
relentless pain.
41
00:03:29,933 --> 00:03:30,933
No one would believe it.
42
00:03:34,400 --> 00:03:38,300
I said to my best friend,
I said, "Look at me right now.
43
00:03:38,300 --> 00:03:40,733
Look at me.
What do I look like?"
44
00:03:40,733 --> 00:03:42,600
And he said, "You look great."
45
00:03:42,600 --> 00:03:46,133
I said, "You cannot imagine
the pain in my body right now."
46
00:03:54,767 --> 00:03:56,500
- My case
was sort of cut-and-dry.
47
00:03:58,200 --> 00:03:59,600
A, I was a park ranger.
48
00:03:59,600 --> 00:04:01,567
B, I knew exactly
when I was bitten,
49
00:04:01,567 --> 00:04:04,067
and I saved the tick
and brought it to my doctor.
50
00:04:04,067 --> 00:04:05,867
C, I had a red rash,
51
00:04:05,867 --> 00:04:08,067
and D, I had
a rather classic case
52
00:04:08,067 --> 00:04:10,933
of neurological Lyme disease
with all the usual trimmings,
53
00:04:10,933 --> 00:04:13,633
but I brought all that
to the doctors,
54
00:04:13,633 --> 00:04:15,533
and it took five doctors
to figure it out.
55
00:04:19,467 --> 00:04:21,300
- "I don't think you're sick.
56
00:04:21,300 --> 00:04:22,767
I don't think there's
anything wrong with you."
57
00:04:22,767 --> 00:04:24,067
- Everybody's telling you
it's in your head.
58
00:04:24,067 --> 00:04:25,367
You know it's not in your head.
59
00:04:25,367 --> 00:04:26,933
- We don't think
there's anything wrong with you.
60
00:04:26,933 --> 00:04:28,133
- "There is nothing wrong."
61
00:04:28,133 --> 00:04:29,633
- "We've done your labs.
62
00:04:29,633 --> 00:04:31,467
Your labs are fine.
You're fine."
63
00:04:31,467 --> 00:04:35,267
- "There's no medicine
for someone like you.
64
00:04:35,267 --> 00:04:37,367
"You're an attractive girl,
and obviously,
65
00:04:37,367 --> 00:04:41,800
you don't feel like you're
getting enough attention."
66
00:04:54,667 --> 00:04:57,233
This is my adrenaline now.
67
00:05:00,233 --> 00:05:01,933
So if you want
to see me get worse,
68
00:05:01,933 --> 00:05:06,500
I'll just do one length,
not even a lap, half a length.
69
00:05:07,900 --> 00:05:13,267
I'll have to be hauled out
like the catch of the day.
70
00:05:18,500 --> 00:05:23,233
- She's become very,
very good at hiding symptoms.
71
00:05:23,233 --> 00:05:25,400
It doesn't matter
how bad she is.
72
00:05:25,400 --> 00:05:27,367
I mean, the girl
cannot get out of bed,
73
00:05:27,367 --> 00:05:29,700
and her catchphrase is,
"I'll do it myself."
74
00:05:29,700 --> 00:05:32,133
- I can do it myself.
- That's right.
75
00:05:32,133 --> 00:05:33,367
I mean, she can do--
76
00:05:33,367 --> 00:05:35,100
I can go grab something
in 30 seconds,
77
00:05:35,100 --> 00:05:37,133
or she can take four hours
to crawl across the house,
78
00:05:37,133 --> 00:05:38,600
and she will not let me
go get it.
79
00:05:40,833 --> 00:05:43,367
- I know what
my bad days are like,
80
00:05:43,367 --> 00:05:45,633
and I do my best
to try to prevent them,
81
00:05:45,633 --> 00:05:48,367
so to know
that I could get worse,
82
00:05:48,367 --> 00:05:51,967
that's not something
I'm looking forward to.
83
00:05:54,300 --> 00:05:55,800
The unknown is pretty scary.
84
00:06:05,700 --> 00:06:07,067
- I live on the west side
85
00:06:07,067 --> 00:06:09,900
of the northern Sierra Nevada
in California.
86
00:06:15,333 --> 00:06:16,800
I'm a writer now.
87
00:06:19,500 --> 00:06:22,067
I was a park ranger
for 21 years
88
00:06:22,067 --> 00:06:25,067
until I got Lyme disease
and had to quit.
89
00:06:35,767 --> 00:06:39,533
It began with profound fatigue.
90
00:06:39,533 --> 00:06:42,733
Then I developed stabbing
and shooting pains.
91
00:06:42,733 --> 00:06:44,733
I started
having vision problems,
92
00:06:44,733 --> 00:06:46,300
blurred vision,
93
00:06:46,300 --> 00:06:51,100
and then came the memory loss
and the cognitive problems.
94
00:06:53,167 --> 00:06:55,100
And once, I drove to my office,
95
00:06:55,100 --> 00:06:57,800
a place I'd commuted to
for 13 years,
96
00:06:57,800 --> 00:07:00,300
and stopped on the way home
97
00:07:00,300 --> 00:07:02,367
and called my wife
on the cell phone
98
00:07:02,367 --> 00:07:05,100
and told her that I wasn't sure
I could find my way home.
99
00:07:05,100 --> 00:07:07,733
I just wasn't
in good enough shape to drive,
100
00:07:07,733 --> 00:07:09,133
couldn't remember how to do it.
101
00:07:15,067 --> 00:07:17,900
If I hadn't had any kids,
I might have killed myself.
102
00:07:22,067 --> 00:07:25,100
My life was so uncomfortable
to be in instead.
103
00:07:25,100 --> 00:07:26,900
I don't know that
I would have wanted to be here
104
00:07:26,900 --> 00:07:29,633
had I not had stronger
family connections, you know?
105
00:07:29,633 --> 00:07:30,833
Kept me here.
106
00:07:41,967 --> 00:07:44,967
[U2's Pride
playing]
107
00:07:44,967 --> 00:07:49,933
- I'm an event producer
for U2 shows on tour.
108
00:07:49,933 --> 00:07:54,433
I get to do the VIP parties
for all the band's guests.
109
00:07:54,433 --> 00:07:57,500
I've loved this band
since I was a kid.
110
00:07:57,500 --> 00:08:00,967
I mean, I had the freaking
personalized license plate.
111
00:08:05,700 --> 00:08:09,933
Everybody's in survival mode
on tour.
112
00:08:09,933 --> 00:08:14,767
It's insane.
It's completely insane.
113
00:08:14,767 --> 00:08:18,600
The hardest thing is,
everybody thinks I'm normal.
114
00:08:36,167 --> 00:08:39,367
At home, I was in bed
and feeling just so sick,
115
00:08:39,367 --> 00:08:43,700
and just searing, searing pain.
116
00:08:43,700 --> 00:08:45,067
It got worse and worse,
117
00:08:45,067 --> 00:08:50,067
and I started having pretty bad
neurological problems.
118
00:08:50,067 --> 00:08:52,333
I got to the point
of just do or die,
119
00:08:52,333 --> 00:08:54,167
just go for something
120
00:08:54,167 --> 00:08:57,333
instead of sitting in my room,
rotting in my bed.
121
00:09:04,067 --> 00:09:05,300
- Over the last 12 years,
122
00:09:05,300 --> 00:09:07,233
I've been diagnosed
off and on with lupus.
123
00:09:07,233 --> 00:09:09,067
- Chronic fatigue syndrome,
Crohn's disease.
124
00:09:09,067 --> 00:09:12,100
- Fibromyalgia.
- Lupus, fibromyalgia, MS.
125
00:09:12,100 --> 00:09:14,567
- Fibromyalgia.
- Rheumatoid arthritis.
126
00:09:14,567 --> 00:09:16,800
- Doctors thought I had ADD.
127
00:09:16,800 --> 00:09:19,233
- Chronic fatigue syndrome.
- Chronic fatigue syndrome.
128
00:09:19,233 --> 00:09:21,200
- Parkinson's disease.
- Syphilis.
129
00:09:21,200 --> 00:09:25,733
- Multiple sclerosis.
- MS to ALS to nothing.
130
00:09:25,733 --> 00:09:26,733
- They were pulling anything
131
00:09:26,733 --> 00:09:28,067
out of their hat
they could think of.
132
00:09:28,067 --> 00:09:30,767
- Doctor after doctor
after doctor after doctor
133
00:09:30,767 --> 00:09:33,267
after doctor misdiagnosing her,
134
00:09:33,267 --> 00:09:35,400
putting her on some medication
that didn't work
135
00:09:35,400 --> 00:09:36,867
and just thought
we were both nuts.
136
00:09:41,467 --> 00:09:43,067
- There's evidence
that Lyme disease
137
00:09:43,067 --> 00:09:46,867
has been around for a long time,
but here in the United States,
138
00:09:46,867 --> 00:09:49,600
it was the early 1970s
when a Connecticut mom
139
00:09:49,600 --> 00:09:50,833
looked around her neighborhood
140
00:09:50,833 --> 00:09:54,133
and noticed something
was not quite right.
141
00:09:54,133 --> 00:09:56,233
- Well,
I was frightened, really,
142
00:09:56,233 --> 00:09:58,833
and doctors, you know,
were insinuating
143
00:09:58,833 --> 00:10:00,167
that it was all in my head.
144
00:10:03,133 --> 00:10:07,167
In the '70s, we were all
having strange symptoms,
145
00:10:07,167 --> 00:10:11,833
headaches and stiff neck
and swollen joints.
146
00:10:11,833 --> 00:10:14,900
As I looked
around the neighborhood,
147
00:10:14,900 --> 00:10:16,667
I realized
that there were others
148
00:10:16,667 --> 00:10:20,467
that were having swollen knees
and rashes.
149
00:10:20,467 --> 00:10:23,333
Finally, when our symptoms
just weren't going away,
150
00:10:23,333 --> 00:10:25,633
I decided to call
the state health department
151
00:10:25,633 --> 00:10:27,700
and report
this mysterious disease
152
00:10:27,700 --> 00:10:30,033
that seemed to be coming
to our area.
153
00:10:32,467 --> 00:10:34,467
- In 1981,
154
00:10:34,467 --> 00:10:40,633
I discovered the causative agent
of Lyme disease.
155
00:10:42,867 --> 00:10:46,933
My discovery was published
in the Science magazine
156
00:10:46,933 --> 00:10:50,333
and considered
as a breakthrough.
157
00:10:53,367 --> 00:10:54,667
- We didn't know
how to treat it.
158
00:10:54,667 --> 00:10:56,300
It was a newly described germ.
159
00:10:56,300 --> 00:10:58,500
It looked like syphilis
under the microscope,
160
00:10:58,500 --> 00:11:00,533
but that's as far as we got.
161
00:11:00,533 --> 00:11:03,067
We also didn't have any idea
how widespread it was,
162
00:11:03,067 --> 00:11:08,667
how much suffering it caused,
and the controversies to come.
163
00:11:08,667 --> 00:11:11,900
- Lyme disease
is caused by bacteria,
164
00:11:11,900 --> 00:11:13,500
the Borrelia spirochete.
165
00:11:15,233 --> 00:11:17,733
It's spiral-shaped,
so it can drill through tissue
166
00:11:17,733 --> 00:11:21,600
and get into just about any part
of the body.
167
00:11:21,600 --> 00:11:23,067
The most common form
of transmission
168
00:11:23,067 --> 00:11:25,367
is through the bite
of several species of tick
169
00:11:25,367 --> 00:11:29,533
commonly known as deer ticks.
170
00:11:29,533 --> 00:11:31,333
- There's bacteria
inside the tick,
171
00:11:31,333 --> 00:11:33,067
so when it bites you,
172
00:11:33,067 --> 00:11:37,567
it just starts sucking up
your blood
173
00:11:37,567 --> 00:11:39,800
like Dracula would do.
174
00:11:39,800 --> 00:11:43,767
While it's, like,
sucking in the blood,
175
00:11:43,767 --> 00:11:45,733
the bacteria will be released,
176
00:11:45,733 --> 00:11:48,133
and then it just gets
into the blood,
177
00:11:48,133 --> 00:11:54,100
and it gets into your heart,
and then your brain,
178
00:11:54,100 --> 00:11:56,433
and then you have Lyme disease.
179
00:12:05,433 --> 00:12:06,800
- It'd seem like
for every thing
180
00:12:06,800 --> 00:12:09,933
that I'd read about it
that it was harmful,
181
00:12:09,933 --> 00:12:12,533
there was always something
I'd read about it that said,
182
00:12:12,533 --> 00:12:13,900
"Oh, no, no, no.
183
00:12:13,900 --> 00:12:16,567
It's actually
very easy to cure."
184
00:12:16,567 --> 00:12:19,533
Well, when I saw this doctor,
you know, he said,
185
00:12:19,533 --> 00:12:21,667
"You've got
a long road ahead of you."
186
00:12:24,567 --> 00:12:26,333
I, Mandy, take you, Sean...
187
00:12:26,333 --> 00:12:28,533
- To be my husband...
- To be my husband...
188
00:12:28,533 --> 00:12:30,800
- To have and to hold...
- To have and to hold...
189
00:12:30,800 --> 00:12:33,567
- In sickness and in health...
- In sickness and in health...
190
00:12:33,567 --> 00:12:36,133
- To love and to cherish...
- To love and to cherish...
191
00:12:36,133 --> 00:12:39,400
- Until death do us part.
- Until death do us part.
192
00:13:10,133 --> 00:13:14,733
- * It's not the pale-- *
- Husband and wife.
193
00:13:14,733 --> 00:13:18,800
- * That excites me *
194
00:13:18,800 --> 00:13:21,167
- There's no difference
in how I feel about her now
195
00:13:21,167 --> 00:13:23,067
and how I felt about her then.
196
00:13:23,067 --> 00:13:25,467
- We'll see if he says that
197
00:13:25,467 --> 00:13:27,433
when I'm starting
to get treatment
198
00:13:27,433 --> 00:13:29,733
and I'm all--
199
00:13:32,067 --> 00:13:35,700
- * Oh, no *
200
00:13:35,700 --> 00:13:43,400
* It's just
the nearness of you *
201
00:13:46,400 --> 00:13:51,067
* *
202
00:13:51,067 --> 00:13:53,633
- I think, like a lot of people
who've had Lyme disease,
203
00:13:53,633 --> 00:13:56,467
I've been led to wonder
why it's not being treated
204
00:13:56,467 --> 00:14:00,100
with the kind of seriousness
that it deserves.
205
00:14:04,367 --> 00:14:06,567
This is not a rare disease.
206
00:14:06,567 --> 00:14:08,367
It's thought of
as a rare disease,
207
00:14:08,367 --> 00:14:12,100
but in fact, there's nothing
controversial about the fact
208
00:14:12,100 --> 00:14:14,800
that it's the most common
vector-borne disease
209
00:14:14,800 --> 00:14:16,833
in America today.
210
00:14:16,833 --> 00:14:20,367
It is far, far more common
and much more dangerous
211
00:14:20,367 --> 00:14:23,533
to the average American
than West Nile virus is.
212
00:14:23,533 --> 00:14:26,400
The Centers for Disease Control
213
00:14:26,400 --> 00:14:30,867
reported over 35,000 new cases
last year.
214
00:14:30,867 --> 00:14:33,400
Yet because the disease
is so often overlooked,
215
00:14:33,400 --> 00:14:34,800
they admit
that the actual number
216
00:14:34,800 --> 00:14:37,200
may be up to 12 times higher,
217
00:14:37,200 --> 00:14:40,300
making Lyme disease
far more prevalent than AIDS.
218
00:14:44,367 --> 00:14:46,200
In the past 15 years,
219
00:14:46,200 --> 00:14:49,200
annual cases
have increased fourfold,
220
00:14:49,200 --> 00:14:51,133
and in the past
two years alone,
221
00:14:51,133 --> 00:14:54,667
cases have almost doubled.
222
00:14:54,667 --> 00:14:57,067
- The number of cases
of Lyme disease went way up
223
00:14:57,067 --> 00:15:00,233
in this country last year,
up by 41% to be exact.
224
00:15:00,233 --> 00:15:01,933
- A record number
of Lyme disease cases
225
00:15:01,933 --> 00:15:04,067
have been reported in the state
of Maryland this year.
226
00:15:04,067 --> 00:15:07,400
- New cases of Lyme disease
are up 50% in Massachusetts.
227
00:15:07,400 --> 00:15:09,967
- The CDC admits
there are at least ten times
228
00:15:09,967 --> 00:15:11,200
as many cases out there.
229
00:15:11,200 --> 00:15:13,100
- The entire neighborhoods
and whole families
230
00:15:13,100 --> 00:15:15,733
are being debilitated
by this infectious disease.
231
00:15:15,733 --> 00:15:19,267
- Health officials
are now calling it an epidemic.
232
00:15:19,267 --> 00:15:24,267
- I think there are hundreds
of thousands of people out there
233
00:15:24,267 --> 00:15:27,600
who have Lyme disease who have
no idea they have Lyme disease.
234
00:15:27,600 --> 00:15:31,067
There are doctors out there
who aren't looking for it.
235
00:15:31,067 --> 00:15:33,533
- He just kept saying,
"You don't have Lyme."
236
00:15:33,533 --> 00:15:34,767
- "You don't have
Lyme disease."
237
00:15:34,767 --> 00:15:35,800
- "You don't have Lyme."
238
00:15:35,800 --> 00:15:37,100
- He told me
there was no such thing
239
00:15:37,100 --> 00:15:38,500
as Lyme disease
in North Carolina.
240
00:15:38,500 --> 00:15:41,100
- "Lyme disease doesn't
really exist in Tennessee."
241
00:15:41,100 --> 00:15:43,300
- "You can't have Lyme disease,
because you haven't been
242
00:15:43,300 --> 00:15:45,733
to these areas in Long Island
or this area in Connecticut."
243
00:15:45,733 --> 00:15:48,800
- I've been told it isn't Lyme
hundreds and hundreds of times.
244
00:15:48,800 --> 00:15:50,933
How do you know you have it?
245
00:15:50,933 --> 00:15:52,133
Why do you say you have it?"
246
00:15:52,133 --> 00:15:55,767
- He slammed his fist
on the table and said,
247
00:15:55,767 --> 00:15:57,633
"Don't talk to me
about Lyme anymore."
248
00:16:01,100 --> 00:16:03,100
- It is a national
health crisis
249
00:16:03,100 --> 00:16:07,067
that is completely and totally
being ignored and squashed.
250
00:16:07,067 --> 00:16:09,267
What is going on?
251
00:16:14,067 --> 00:16:16,733
- We have a major problem
with this disease.
252
00:16:16,733 --> 00:16:19,433
We have a major problem
finding out who's got it,
253
00:16:19,433 --> 00:16:21,867
treating them effectively
and quickly.
254
00:16:21,867 --> 00:16:24,567
It's far more expensive
to treat in late stages
255
00:16:24,567 --> 00:16:26,300
and less effective
than it is early,
256
00:16:26,300 --> 00:16:28,400
and yet we don't respond
early enough
257
00:16:28,400 --> 00:16:29,567
with many of the patients,
258
00:16:29,567 --> 00:16:31,633
and many of them
get to late stage,
259
00:16:31,633 --> 00:16:34,300
and they're sick
for the rest of their lives.
260
00:16:42,333 --> 00:16:45,067
- Okay, quiet.
No barking.
261
00:16:45,067 --> 00:16:46,467
No barking.
Okay.
262
00:16:46,467 --> 00:16:48,100
- Have a good day.
- I love you, my girl.
263
00:16:48,100 --> 00:16:49,467
I'll see you later.
264
00:16:49,467 --> 00:16:53,367
I'm a medical doctor
with a specialty in pathology.
265
00:16:53,367 --> 00:16:55,067
I'm a general pathologist,
266
00:16:55,067 --> 00:16:57,333
but I'm doing
molecular studies now
267
00:16:57,333 --> 00:17:02,133
in connection with my 20 years
of researching Lyme disease.
268
00:17:02,133 --> 00:17:04,433
The research
is something that I do
269
00:17:04,433 --> 00:17:05,700
after I've done my day's work,
270
00:17:05,700 --> 00:17:08,133
and if I have energy left,
I work into the night,
271
00:17:08,133 --> 00:17:10,633
so I do the research
on my own time.
272
00:17:20,467 --> 00:17:26,133
Okay, hi, Travis.
My lab assistant Travis.
273
00:17:26,133 --> 00:17:28,167
This part of the cellar is mine.
274
00:17:28,167 --> 00:17:31,433
The rest of the cellar
is for other things in our life,
275
00:17:31,433 --> 00:17:33,667
like Christmas ornaments.
276
00:17:33,667 --> 00:17:35,267
This is my microscope.
277
00:17:35,267 --> 00:17:38,067
I've owned this for 20 years.
It's a research microscope.
278
00:17:39,467 --> 00:17:42,067
My work is building bridges
279
00:17:42,067 --> 00:17:44,133
between what I can see
under the microscope
280
00:17:44,133 --> 00:17:46,467
and what is going on
in the human body.
281
00:17:46,467 --> 00:17:50,233
The orthodox, conventional view
is that the bacteria
282
00:17:50,233 --> 00:17:53,400
that causes Lyme disease
doesn't stay around very long
283
00:17:53,400 --> 00:17:54,733
inside the human body.
284
00:17:54,733 --> 00:17:58,533
That will be disproven,
and we will enter an arena now
285
00:17:58,533 --> 00:18:01,300
where long-term,
chronic infections
286
00:18:01,300 --> 00:18:04,167
will be embraced
by the medical community,
287
00:18:04,167 --> 00:18:06,067
and the patient will benefit.
288
00:18:08,367 --> 00:18:11,733
- Alan MacDonald
is doing frontier research
289
00:18:11,733 --> 00:18:16,300
about the role of Lyme disease,
Borrelia infection
290
00:18:16,300 --> 00:18:18,167
in neurological illnesses,
291
00:18:18,167 --> 00:18:20,933
and he's doing it against
substantial resistance
292
00:18:20,933 --> 00:18:22,800
in the traditional
academic community.
293
00:18:22,800 --> 00:18:25,700
- I'm one man working alone,
294
00:18:25,700 --> 00:18:30,833
and there is great skepticism
that my work has meaning,
295
00:18:30,833 --> 00:18:32,800
and I'm working hard
to get some evidence to say
296
00:18:32,800 --> 00:18:36,967
that there is some meaning,
and time will tell.
297
00:18:46,867 --> 00:18:49,067
- Two groups of doctors
are pitted against each other
298
00:18:49,067 --> 00:18:52,067
over just about every aspect
of Lyme disease,
299
00:18:52,067 --> 00:18:54,067
from the very definition
of the illness
300
00:18:54,067 --> 00:18:55,800
to how it should be treated.
301
00:18:58,633 --> 00:18:59,667
- At the present time,
302
00:18:59,667 --> 00:19:01,433
the traditional
medical community
303
00:19:01,433 --> 00:19:04,067
believes that there is
basically only an acute form
304
00:19:04,067 --> 00:19:06,633
of the disease
that is characterized
305
00:19:06,633 --> 00:19:10,700
in a sound byte as "hard to get"
and "easy to treat."
306
00:19:10,700 --> 00:19:16,467
For 10 or 15 years, there's been
a second group of Lyme doctors
307
00:19:16,467 --> 00:19:18,233
that say, "No, that's not true.
308
00:19:18,233 --> 00:19:21,067
"Lyme disease can be
a persistent, chronic illness
309
00:19:21,067 --> 00:19:23,267
with many different symptoms."
310
00:19:23,267 --> 00:19:26,933
So the question that is posed
at the present time is,
311
00:19:26,933 --> 00:19:29,667
"Does chronic Lyme disease
really exist?"
312
00:19:41,867 --> 00:19:45,467
- We are driving from Orlando up
to North Carolina.
313
00:19:45,467 --> 00:19:47,633
It's a little over 500 miles,
314
00:19:47,633 --> 00:19:50,967
which is the closest spot
that we have to Florida
315
00:19:50,967 --> 00:19:52,567
that actually has a clue
about Lyme.
316
00:19:59,267 --> 00:20:01,133
My biggest fear is
that treatments
317
00:20:01,133 --> 00:20:02,267
would be unsuccessful.
318
00:20:04,567 --> 00:20:08,067
She could continue
to have a downward spiral.
319
00:20:08,067 --> 00:20:11,100
Neurologically, she could have
things that are irreversible.
320
00:20:16,467 --> 00:20:17,400
- Yeah.
321
00:20:28,133 --> 00:20:29,067
Okay.
322
00:20:40,300 --> 00:20:42,800
- While we're optimistic that
Mandy will steadily improve,
323
00:20:42,800 --> 00:20:45,867
I'm skeptical that it's gonna be
smooth sailing.
324
00:20:45,867 --> 00:20:47,067
She's so fragile,
325
00:20:47,067 --> 00:20:49,800
and her central nervous system
is so irritable.
326
00:20:49,800 --> 00:20:52,133
It doesn't take a lot
to set her off.
327
00:20:52,133 --> 00:20:53,900
We have to figure out
what's the best way
328
00:20:53,900 --> 00:20:56,567
to treat you intermittently
to get you to the best place
329
00:20:56,567 --> 00:21:00,333
so that your immune system
is more in charge,
330
00:21:00,333 --> 00:21:02,800
so that's a tricky business.
331
00:21:07,333 --> 00:21:10,100
- He said, "Well, we're gonna
have to do six to eight months
332
00:21:10,100 --> 00:21:11,700
"of antibiotic therapy.
333
00:21:11,700 --> 00:21:14,100
"We'll have
to put a catheter in,
334
00:21:14,100 --> 00:21:16,400
"you know,
to your superior vena cava,
335
00:21:16,400 --> 00:21:18,200
and then you're
gonna probably get worse."
336
00:21:18,200 --> 00:21:19,633
So I said,
337
00:21:19,633 --> 00:21:23,067
"Well, by worse, do you mean,
like, emergency room worse?"
338
00:21:23,067 --> 00:21:25,533
And he said, "Yeah."
339
00:21:25,533 --> 00:21:27,767
- Let's just do one at a time.
- Mm-hmm.
340
00:21:27,767 --> 00:21:30,633
- Let's do this one,
and this is as needed, right?
341
00:21:30,633 --> 00:21:33,067
Lorazepam, and then here,
your supplements, that's fine.
342
00:21:33,067 --> 00:21:34,500
These are all fine.
343
00:21:34,500 --> 00:21:36,667
What I sense is that we're
at the beginning of something
344
00:21:36,667 --> 00:21:38,100
that's gonna be huge,
345
00:21:38,100 --> 00:21:40,600
just like I had that feeling
20-some years ago with HIV.
346
00:21:40,600 --> 00:21:44,267
I've been seeing people
from all over the country.
347
00:21:44,267 --> 00:21:46,167
They're sick.
They've got a complex illness.
348
00:21:46,167 --> 00:21:49,500
They're being ignored.
349
00:21:49,500 --> 00:21:51,400
It's gonna be
an explosive area of medicine,
350
00:21:51,400 --> 00:21:53,400
and we're gonna learn
a lot about chronic illness,
351
00:21:53,400 --> 00:21:55,067
and I think
that's gonna help health care
352
00:21:55,067 --> 00:21:55,933
in general tremendously.
353
00:22:03,733 --> 00:22:06,300
- I have seen probably 30, maybe
more, doctors.
354
00:22:06,300 --> 00:22:08,367
- 30 doctors.
- About 15 doctors.
355
00:22:08,367 --> 00:22:11,233
- I've spent over $100,000
out of pocket.
356
00:22:11,233 --> 00:22:14,567
- $150,000.
- $75,000 to $100,000.
357
00:22:14,567 --> 00:22:16,333
- I was misdiagnosed
for 3 years.
358
00:22:16,333 --> 00:22:17,967
- 5 years.
- 14 years.
359
00:22:17,967 --> 00:22:19,200
- 15 years.
360
00:22:19,200 --> 00:22:20,800
- It's hundreds of thousands
of dollars.
361
00:22:31,900 --> 00:22:33,167
- I'm guessing that my case,
362
00:22:33,167 --> 00:22:35,167
which could have been
controlled with, probably,
363
00:22:35,167 --> 00:22:39,067
a single bottle of doxycycline
at the time I was bitten,
364
00:22:39,067 --> 00:22:43,867
probably would have cost
something like $25 or $50 total
365
00:22:43,867 --> 00:22:46,067
plus the doctor visit.
366
00:22:46,067 --> 00:22:49,433
As it is, I'm guessing
that my case has now amounted
367
00:22:49,433 --> 00:22:52,567
to $75,000 to $100,000.
368
00:22:58,233 --> 00:23:01,133
- My concern is that
the majority of the patients
369
00:23:01,133 --> 00:23:04,700
that I see here in this office,
this very office,
370
00:23:04,700 --> 00:23:07,667
who come to me
because they've been treated
371
00:23:07,667 --> 00:23:10,067
for chronic Lyme disease,
372
00:23:10,067 --> 00:23:12,500
is that they don't have
any evidence
373
00:23:12,500 --> 00:23:17,067
of ever having had
Lyme disease once, ever,
374
00:23:17,067 --> 00:23:21,100
not now, not a year ago,
not five years ago.
375
00:23:21,100 --> 00:23:23,067
They didn't have the rash.
376
00:23:23,067 --> 00:23:25,167
They never had
a positive blood test.
377
00:23:25,167 --> 00:23:28,267
They never had anything.
378
00:23:28,267 --> 00:23:29,267
- You see, class,
379
00:23:29,267 --> 00:23:31,067
my Lyme disease
turned out to be...
380
00:23:32,067 --> 00:23:33,700
psychosomatic.
381
00:23:34,867 --> 00:23:36,833
- No, that means
she was faking it.
382
00:23:36,833 --> 00:23:38,633
- No, actually,
it was a little of both.
383
00:23:38,633 --> 00:23:41,100
- I was originally told
at the very beginning
384
00:23:41,100 --> 00:23:44,300
that I had a very deep
psychological problem.
385
00:23:44,300 --> 00:23:46,267
- They were telling me
it wasn't real.
386
00:23:46,267 --> 00:23:48,200
- They said I needed
to see a psychiatrist.
387
00:23:48,200 --> 00:23:50,700
- "You need
to see a psychiatrist."
388
00:23:50,700 --> 00:23:52,733
- He told me,
"No, it's not Lyme.
389
00:23:52,733 --> 00:23:56,833
You don't have the rash.
You are depressed."
390
00:23:56,833 --> 00:23:59,667
- "You're faking it.
You need to get mental help."
391
00:23:59,667 --> 00:24:01,600
- "You're a teenager.
Get up and walk."
392
00:24:01,600 --> 00:24:03,100
- "She doesn't want
to go to school.
393
00:24:03,100 --> 00:24:04,767
You know, she's just depressed."
394
00:24:04,767 --> 00:24:06,300
- You think you're crazy,
but I'm not.
395
00:24:06,300 --> 00:24:07,300
I know I'm not crazy.
396
00:24:07,300 --> 00:24:09,100
This thing screws you up
big time.
397
00:24:12,567 --> 00:24:14,167
- Tallyho.
398
00:24:14,167 --> 00:24:17,267
Let the drag begin.
399
00:24:17,267 --> 00:24:19,867
Well, where we are now
is a town in Cape Cod,
400
00:24:19,867 --> 00:24:23,067
and Cape Cod is considered to be
endemic for Lyme disease.
401
00:24:25,667 --> 00:24:26,833
Oh, I'm good.
402
00:24:26,833 --> 00:24:29,800
This is a male deer tick
that we picked up
403
00:24:29,800 --> 00:24:32,667
from the ground on
our very first 30-second drag.
404
00:24:36,267 --> 00:24:40,467
This is a deer tick nymph.
This is the second stage.
405
00:24:40,467 --> 00:24:43,933
They'll feed on a host
for five days, maybe,
406
00:24:43,933 --> 00:24:46,833
and that's how Lyme disease
is transmitted,
407
00:24:46,833 --> 00:24:48,233
and it just doesn't
seem possible
408
00:24:48,233 --> 00:24:52,367
that this poppy seed-size thing
is gonna make you bedridden,
409
00:24:52,367 --> 00:24:54,867
possibly for the rest
of your life.
410
00:24:54,867 --> 00:24:59,067
Now we're trying for
a deer tick female.
411
00:24:59,067 --> 00:25:01,967
That'll complete the trinity.
412
00:25:01,967 --> 00:25:04,833
And here we are.
413
00:25:04,833 --> 00:25:06,167
The trinity is complete.
414
00:25:06,167 --> 00:25:07,233
There are two females.
415
00:25:07,233 --> 00:25:10,267
Let's call them
Thelma and Louise,
416
00:25:10,267 --> 00:25:11,233
and they're on the hunt.
417
00:25:14,067 --> 00:25:15,300
Oh, there's another male.
418
00:25:15,300 --> 00:25:17,367
There's another nymph.
419
00:25:17,367 --> 00:25:19,733
We got another nymph.
420
00:25:19,733 --> 00:25:23,067
So our odds of getting
Lyme disease here are going up.
421
00:25:23,067 --> 00:25:28,467
Despite years of education,
the incident of Lyme disease
422
00:25:28,467 --> 00:25:31,967
has been raised by 40%
from last year.
423
00:25:31,967 --> 00:25:35,533
It's only going up.
424
00:25:38,100 --> 00:25:39,600
- This is all tick habitat,
425
00:25:39,600 --> 00:25:41,067
everything
we're driving by here.
426
00:25:42,867 --> 00:25:45,533
And Lyme is turning up in states
where it's never been known.
427
00:25:45,533 --> 00:25:48,267
I mean, I grew up
in this part of the world,
428
00:25:48,267 --> 00:25:50,433
and we didn't have a problem
with Lyme disease
429
00:25:50,433 --> 00:25:51,533
that we know about.
430
00:25:51,533 --> 00:25:54,467
I'm convinced
that in the long run
431
00:25:54,467 --> 00:25:55,833
that what we're gonna learn is
432
00:25:55,833 --> 00:26:00,200
that we're seeing a process
of ecological change.
433
00:26:06,533 --> 00:26:10,567
We're living in the largest
extinction in 65 million years
434
00:26:10,567 --> 00:26:13,433
of other forms of life.
435
00:26:13,433 --> 00:26:15,200
While many species
are dying out,
436
00:26:15,200 --> 00:26:19,600
viruses and bacteria
are finding new opportunities.
437
00:26:19,600 --> 00:26:21,567
Warming climates, jet travel,
438
00:26:21,567 --> 00:26:24,433
and human expansion
into wildlife habitats
439
00:26:24,433 --> 00:26:29,100
are favoring diseases that jump
from animals to people,
440
00:26:29,100 --> 00:26:30,900
diseases we're not prepared for.
441
00:26:34,567 --> 00:26:36,067
- It's possible
that, years ago,
442
00:26:36,067 --> 00:26:38,767
the patients were only getting
pure Lyme disease,
443
00:26:38,767 --> 00:26:40,600
and this might explain
why the literature,
444
00:26:40,600 --> 00:26:42,167
there's such a disparity,
445
00:26:42,167 --> 00:26:45,467
where some people say, "Oh, no,
Lyme doesn't look like this."
446
00:26:45,467 --> 00:26:47,633
What we're now seeing is,
447
00:26:47,633 --> 00:26:50,067
these ticks are containing
multiple organisms.
448
00:26:50,067 --> 00:26:52,367
They're not just containing
Borrelia burgdorferi,
449
00:26:52,367 --> 00:26:53,800
the organism that causes Lyme,
450
00:26:53,800 --> 00:26:57,400
but they're containing
ehrlichiosis, Babesia microti.
451
00:26:57,400 --> 00:26:58,900
It's a malaria-like organism.
452
00:27:01,467 --> 00:27:03,900
When you get Lyme
and ehrlichia and Babesia
453
00:27:03,900 --> 00:27:06,200
and Bartonella henselae,
cat-scratch fever,
454
00:27:06,200 --> 00:27:08,533
and Mycoplasma fermentans
and viruses,
455
00:27:08,533 --> 00:27:11,967
the immune system
gets overwhelmed.
456
00:27:11,967 --> 00:27:13,367
I'm not sure, years ago,
457
00:27:13,367 --> 00:27:16,733
all of these co-infections
were present as they are now.
458
00:27:16,733 --> 00:27:18,833
Now the patients
who are coming in to see me
459
00:27:18,833 --> 00:27:20,367
are multiply co-infected.
460
00:27:20,367 --> 00:27:21,700
They're much, much sicker,
461
00:27:21,700 --> 00:27:24,200
and it's because
it's no longer just Lyme.
462
00:27:37,433 --> 00:27:40,533
- "Ticks are very sensitive
to dryness.
463
00:27:40,533 --> 00:27:43,533
"Their bodies desiccate easily,
and in dry weather,
464
00:27:43,533 --> 00:27:47,067
"they hide deep in mossy
crevices on the barks of trees
465
00:27:47,067 --> 00:27:50,867
"or in the leaf litter
or in wood rat nests.
466
00:27:50,867 --> 00:27:53,933
"Damp weather, however,
makes them more active,
467
00:27:53,933 --> 00:27:57,067
"and they come out and stand
around the tips in branches
468
00:27:57,067 --> 00:28:00,767
"and blades of grass
by trails like hitchhikers
469
00:28:00,767 --> 00:28:03,067
at a freeway on-ramp."
470
00:28:07,133 --> 00:28:09,133
I want us to see clearly
471
00:28:09,133 --> 00:28:13,133
how things are really going
with nature.
472
00:28:13,133 --> 00:28:15,200
We have not succeeded
in developing
473
00:28:15,200 --> 00:28:17,900
any level
of independence from it,
474
00:28:17,900 --> 00:28:20,867
nor, in fact, are our bodies
in any way independent of it.
475
00:28:22,600 --> 00:28:23,600
We've always said,
476
00:28:23,600 --> 00:28:25,367
"Well, you know,
sooner or later,
477
00:28:25,367 --> 00:28:27,067
"some of the damage
that we do to the Earth
478
00:28:27,067 --> 00:28:28,267
can come back to people,"
479
00:28:28,267 --> 00:28:29,933
but I think
at some visceral level,
480
00:28:29,933 --> 00:28:31,667
we've expected
we could evade it,
481
00:28:31,667 --> 00:28:35,400
and I think now
482
00:28:35,400 --> 00:28:37,067
maybe some of that bill
is coming due,
483
00:28:37,067 --> 00:28:39,600
and we're beginning to see
some ecological changes
484
00:28:39,600 --> 00:28:42,100
that are capable
of invading people's bodies.
485
00:28:45,067 --> 00:28:50,067
- A spirochete is a parasite
like a virus is a parasite.
486
00:28:50,067 --> 00:28:53,667
It has to adapt
to different environments.
487
00:28:53,667 --> 00:28:54,900
So you could have
488
00:28:54,900 --> 00:28:57,867
a very virulent,
disease-producing organism.
489
00:28:57,867 --> 00:28:59,900
You could have one that likes
to go to the joints
490
00:28:59,900 --> 00:29:04,333
and doesn't want to penetrate
and cause injury in the brain.
491
00:29:04,333 --> 00:29:06,133
You could have one
that goes to the skin.
492
00:29:07,667 --> 00:29:10,367
- One of the hallmarks
of the onset of untreated Lyme
493
00:29:10,367 --> 00:29:11,900
is a multisystem involvement,
494
00:29:11,900 --> 00:29:14,267
different parts of the body,
things changing, moving around.
495
00:29:20,267 --> 00:29:22,633
You might have
a few weeks of body aches,
496
00:29:22,633 --> 00:29:24,500
and then you might have
a few weeks of headaches
497
00:29:24,500 --> 00:29:26,467
and a few weeks
of real profound fatigue
498
00:29:26,467 --> 00:29:27,967
and few weeks of confusion,
499
00:29:27,967 --> 00:29:29,667
or you'll have pain
in the large joints,
500
00:29:29,667 --> 00:29:31,700
and then it'll switch
to the small joints,
501
00:29:31,700 --> 00:29:33,933
and then, you know,
you're going to a neurologist.
502
00:29:33,933 --> 00:29:35,833
Then you're going
to a bone doctor.
503
00:29:35,833 --> 00:29:37,600
Then you're going
to a stomach specialist.
504
00:29:37,600 --> 00:29:39,067
Then you're going
to a counselor,
505
00:29:39,067 --> 00:29:40,933
and they get labeled
as being crazy.
506
00:29:40,933 --> 00:29:43,600
- Severe headaches.
- Cognitive problems.
507
00:29:43,600 --> 00:29:46,467
- Fatigue, headaches.
- Cardiac arrhythmias.
508
00:29:46,467 --> 00:29:49,267
- It hurts on my foot.
509
00:29:49,267 --> 00:29:51,167
- Joint pain.
I have arthritis.
510
00:29:51,167 --> 00:29:53,667
- I'm tired.
I hurt.
511
00:29:53,667 --> 00:29:56,133
- Involuntary movements.
- Brain fog.
512
00:29:56,133 --> 00:29:57,967
- I lost the use
of my right arm.
513
00:29:57,967 --> 00:30:01,733
- I became dyslexic.
- I had hallucinations.
514
00:30:01,733 --> 00:30:03,867
- Blurred vision.
- Light sensitivity.
515
00:30:03,867 --> 00:30:06,433
- It's a long laundry list.
516
00:30:06,433 --> 00:30:07,633
- The tests for Lyme disease
517
00:30:07,633 --> 00:30:09,567
were developed
more than a decade ago.
518
00:30:09,567 --> 00:30:12,733
They were controversial
back then, and in all this time,
519
00:30:12,733 --> 00:30:14,500
no better tests
have been approved
520
00:30:14,500 --> 00:30:16,000
even though
almost everyone agrees
521
00:30:16,000 --> 00:30:18,167
there are problems
with the current tests.
522
00:30:18,167 --> 00:30:21,300
- About 50% of people
who actually have Lyme disease
523
00:30:21,300 --> 00:30:23,467
are negative
in their test results
524
00:30:23,467 --> 00:30:24,733
with existing methods.
525
00:30:24,733 --> 00:30:27,500
If you're unlucky
and you have real disease
526
00:30:27,500 --> 00:30:30,833
but you test negative,
your disease is still real,
527
00:30:30,833 --> 00:30:32,767
and you still require treatment.
528
00:30:35,767 --> 00:30:38,767
[U2's City of Blinding Lights
playing]
529
00:30:41,400 --> 00:30:44,867
- When I got diagnosed
with Lyme, I thought, "Great.
530
00:30:46,000 --> 00:30:47,400
"Fantastic.
531
00:30:47,400 --> 00:30:50,867
"Finally, finally, I'm gonna
get rid of this thing.
532
00:30:50,867 --> 00:30:54,033
Course of antibiotics,
I'll be good to go."
533
00:30:54,033 --> 00:30:58,400
I could never have imagined
that it would be this long
534
00:30:58,400 --> 00:31:03,433
with the possibility
of being forever.
535
00:31:03,433 --> 00:31:11,367
* *
536
00:31:18,333 --> 00:31:21,200
- * The more you see,
the less you know *
537
00:31:21,200 --> 00:31:25,600
* The less you find out
as you go *
538
00:31:25,600 --> 00:31:29,667
* I knew much more then
than I do now *
539
00:31:29,667 --> 00:31:32,333
- Go for Dana.
540
00:31:32,333 --> 00:31:35,567
- * Neon heart, Day-Glo eyes *
541
00:31:35,567 --> 00:31:38,667
* A city lit by fireflies *
542
00:31:38,667 --> 00:31:42,167
* We're advertising
in the skies *
543
00:31:42,167 --> 00:31:44,867
- I'm very scared of--
actually when the tour ends,
544
00:31:44,867 --> 00:31:50,833
because I feel like my body
will collapse.
545
00:31:53,433 --> 00:31:54,700
I'm a little--
546
00:31:54,700 --> 00:31:56,667
you know, I'm definitely going
on adrenaline,
547
00:31:56,667 --> 00:32:00,900
and the pain's
getting worse and worse,
548
00:32:00,900 --> 00:32:01,900
and I'm getting, you know,
549
00:32:01,900 --> 00:32:04,867
more twitchy
neurological things.
550
00:32:06,967 --> 00:32:09,100
This is a brilliant distraction.
551
00:32:31,067 --> 00:32:32,067
It's so weird, you know?
552
00:32:32,067 --> 00:32:33,200
When you're a kid,
553
00:32:33,200 --> 00:32:34,733
you think of what
your life's gonna be,
554
00:32:34,733 --> 00:32:36,500
and I'm 36.
555
00:32:36,500 --> 00:32:41,167
I'm gonna be 37,
and by now, kids and a house
556
00:32:41,167 --> 00:32:46,533
and, you know,
it's not what I expected.
557
00:32:50,500 --> 00:32:53,500
Lyme pushes you to the point of,
558
00:32:53,500 --> 00:32:56,833
"What do you want?
What are you living for?"
559
00:32:56,833 --> 00:32:58,433
It's not enough
just to be alive.
560
00:33:00,167 --> 00:33:01,200
I mean--
561
00:33:22,733 --> 00:33:24,633
- This is the height
of the season for baseball,
562
00:33:24,633 --> 00:33:27,467
summer vacations,
and Lyme disease.
563
00:33:27,467 --> 00:33:30,133
The disease is now being
reported in almost every state,
564
00:33:30,133 --> 00:33:33,067
and it's reached epidemic levels
in some parts of the Northeast.
565
00:33:33,067 --> 00:33:36,233
- The newest research indicates
the tiny bacteria
566
00:33:36,233 --> 00:33:38,600
pose a special risk
during pregnancy,
567
00:33:38,600 --> 00:33:42,367
since an expectant mother
may not know she's infected.
568
00:33:42,367 --> 00:33:44,167
- We have examples
of the infection
569
00:33:44,167 --> 00:33:45,600
causing miscarriage.
570
00:33:45,600 --> 00:33:48,733
We have examples of infection
causing death of the baby
571
00:33:48,733 --> 00:33:52,133
at the time of birth
or shortly after birth.
572
00:33:52,133 --> 00:33:54,067
- I've had four miscarriages,
573
00:33:54,067 --> 00:33:56,700
two of which were positive
for Lyme disease,
574
00:33:56,700 --> 00:34:01,233
and we had an 18-week loss
that at 15 weeks was healthy,
575
00:34:01,233 --> 00:34:03,067
genetically fine,
and at 18 weeks,
576
00:34:03,067 --> 00:34:07,667
the loss was proven
to come from the Lyme infection.
577
00:34:10,400 --> 00:34:12,200
- Elise came to me
with Lyme disease,
578
00:34:12,200 --> 00:34:14,133
and it just so happened
579
00:34:14,133 --> 00:34:16,600
that as she was finishing up
the treatment, she got pregnant,
580
00:34:16,600 --> 00:34:18,933
and we followed her
with the pregnancy,
581
00:34:18,933 --> 00:34:20,267
and she was doing fine
initially,
582
00:34:20,267 --> 00:34:21,633
and all of a sudden,
she miscarried.
583
00:34:23,833 --> 00:34:26,200
- Two weeks later,
the OB came back and said,
584
00:34:26,200 --> 00:34:27,400
"You were right.
585
00:34:27,400 --> 00:34:29,367
"It was Lyme disease.
The baby was infected.
586
00:34:29,367 --> 00:34:32,300
The fetus and the placenta
were infected, Elise,"
587
00:34:32,300 --> 00:34:34,400
and concluded that
that's what took the life
588
00:34:34,400 --> 00:34:35,800
of this baby at 18 weeks.
589
00:34:35,800 --> 00:34:39,433
- In utero fetal transmission
of Lyme disease to a fetus
590
00:34:39,433 --> 00:34:42,367
is something that has been
of concern to patients
591
00:34:42,367 --> 00:34:45,100
and physicians for many years.
592
00:34:45,100 --> 00:34:46,367
We've looked carefully at that.
593
00:34:46,367 --> 00:34:47,900
There have been
numerous studies.
594
00:34:47,900 --> 00:34:53,167
There's not been one documented
case of congenital Lyme disease.
595
00:34:53,167 --> 00:34:55,767
- Well, that's nonsense
plain and simple,
596
00:34:55,767 --> 00:34:57,300
and it's not only nonsense,
597
00:34:57,300 --> 00:35:00,967
there's significant,
peer-reviewed articles
598
00:35:00,967 --> 00:35:05,133
showing transmission
transplacentally
599
00:35:05,133 --> 00:35:08,167
and at autopsies.
600
00:35:08,167 --> 00:35:10,067
It's just nonsense.
How could that not be?
601
00:35:10,067 --> 00:35:13,133
It doesn't even stand up
physiologically.
602
00:35:13,133 --> 00:35:14,800
That makes no sense.
603
00:35:18,633 --> 00:35:22,600
- Trying to have another baby
has been very frightening.
604
00:35:22,600 --> 00:35:25,367
When I get excited
about having a baby,
605
00:35:25,367 --> 00:35:26,367
I squish it.
606
00:35:26,367 --> 00:35:28,733
I don't let myself get excited,
607
00:35:28,733 --> 00:35:30,700
because I'm so afraid
of setting myself up
608
00:35:30,700 --> 00:35:33,067
for that disappointment again.
609
00:35:35,967 --> 00:35:38,633
And a day for me
is like a lifetime,
610
00:35:38,633 --> 00:35:42,833
and every visit to the doctor
is filled with fear.
611
00:35:42,833 --> 00:35:46,367
Every time I listen to that
Doppler come down to my belly,
612
00:35:46,367 --> 00:35:49,267
I wonder, "Is there going
to be a heartbeat today?"
613
00:35:50,700 --> 00:35:52,367
- At this point,
I have had many women
614
00:35:52,367 --> 00:35:54,467
who have gotten pregnant
who've lost the baby
615
00:35:54,467 --> 00:35:57,467
or they give birth to a baby
that has Lyme,
616
00:35:57,467 --> 00:35:59,100
and the babies don't have--
617
00:35:59,100 --> 00:36:00,833
the developmental growth
may be off.
618
00:36:00,833 --> 00:36:02,400
Their IQ may be lower.
619
00:36:02,400 --> 00:36:03,833
They may develop seizures
620
00:36:03,833 --> 00:36:05,833
or some other type
of neurological problem,
621
00:36:05,833 --> 00:36:07,067
and it's not picked up
622
00:36:07,067 --> 00:36:08,800
because the mother
was not known to have Lyme.
623
00:36:17,300 --> 00:36:19,533
- You can't imagine this.
How could you?
624
00:36:19,533 --> 00:36:21,300
You just can't.
625
00:36:25,933 --> 00:36:28,467
Hi, my name is Jared.
626
00:36:28,467 --> 00:36:34,600
Before my Lyme disease
got so bad, I was able to talk.
627
00:36:34,600 --> 00:36:37,733
Now I have to use
a communication device.
628
00:36:40,167 --> 00:36:46,433
- I wasn't a real healthy
pregnant mom with him.
629
00:36:46,433 --> 00:36:48,867
Well, in retrospect,
I realize that I was sick.
630
00:36:48,867 --> 00:36:50,267
I had Lyme disease,
631
00:36:50,267 --> 00:36:53,300
and I did not realize
that that's what was going on.
632
00:36:57,100 --> 00:37:00,200
I knew something wasn't right
from the time he was born.
633
00:37:00,200 --> 00:37:02,500
I knew it.
634
00:37:02,500 --> 00:37:05,067
I kept getting pooh-poohed
by the doctors.
635
00:37:05,067 --> 00:37:08,733
They said, "Just let him be,
and it'll all work out,"
636
00:37:08,733 --> 00:37:10,300
and it didn't work out.
637
00:37:17,800 --> 00:37:22,833
- At age six, we got the news
that he had brain damage,
638
00:37:22,833 --> 00:37:25,400
and they didn't really know why.
639
00:37:29,500 --> 00:37:32,133
- They thought it was something
that happened in utero
640
00:37:32,133 --> 00:37:33,933
and that the damage was done,
641
00:37:33,933 --> 00:37:38,067
and then we were to just keep
moving forward,
642
00:37:38,067 --> 00:37:40,067
but he didn't move forward.
643
00:37:40,067 --> 00:37:41,300
He kept moving backwards.
644
00:37:43,567 --> 00:37:46,267
- Need you to bend, bud.
645
00:37:46,267 --> 00:37:49,900
Lyme disease happened to be
everywhere around us by then.
646
00:37:49,900 --> 00:37:53,733
It was as if every neighbor
was coming down with it,
647
00:37:53,733 --> 00:37:56,167
and it was, like,
hitting me from every direction
648
00:37:56,167 --> 00:37:58,933
as if, you know,
"Wake up, dummy.
649
00:37:58,933 --> 00:38:00,600
"You're not paying attention,
you know?
650
00:38:00,600 --> 00:38:02,433
There's Lyme disease
everywhere."
651
00:38:08,133 --> 00:38:10,533
There's a gentleman that lives
right up on the hill up here,
652
00:38:10,533 --> 00:38:12,800
and his previous wife
passed away.
653
00:38:12,800 --> 00:38:15,700
She had Lyme disease,
and now he's remarried,
654
00:38:15,700 --> 00:38:17,700
and his new wife
has Lyme disease.
655
00:38:17,700 --> 00:38:20,567
This man here was very ill
from Lyme disease.
656
00:38:20,567 --> 00:38:22,467
And the house over here
to your right,
657
00:38:22,467 --> 00:38:24,200
those people had it,
658
00:38:24,200 --> 00:38:26,067
and the same
with the lady that lives here.
659
00:38:26,067 --> 00:38:27,067
She has it.
660
00:38:28,900 --> 00:38:31,567
I had put a lot of faith
in the doctors.
661
00:38:31,567 --> 00:38:33,200
I believed them.
662
00:38:33,200 --> 00:38:35,300
I want to just
shake them and say,
663
00:38:35,300 --> 00:38:36,367
"How many more kids
664
00:38:36,367 --> 00:38:38,333
"are you going to let
go untreated
665
00:38:38,333 --> 00:38:40,467
because you're not recognizing
what's happening here?"
666
00:38:44,900 --> 00:38:46,833
- I've never seen a child
667
00:38:46,833 --> 00:38:51,333
who's had late-stage
neurologic Lyme disease.
668
00:38:51,333 --> 00:38:54,633
We just don't see late
neurologic disease in children.
669
00:39:01,800 --> 00:39:03,167
- I used to do ballet,
670
00:39:03,167 --> 00:39:06,767
and I was in The Nutcracker
a bunch of times.
671
00:39:09,633 --> 00:39:11,467
That time of year
was always really crazy and--
672
00:39:11,467 --> 00:39:13,400
running around,
going to rehearsals and stuff,
673
00:39:13,400 --> 00:39:14,700
but I loved it.
674
00:39:22,167 --> 00:39:26,367
- Her ankle was bothering her,
then her right knew blew up,
675
00:39:26,367 --> 00:39:27,533
and they tapped into it,
676
00:39:27,533 --> 00:39:29,233
and they found
that she had late-stage Lyme
677
00:39:29,233 --> 00:39:30,167
and it was in her brain.
678
00:39:37,700 --> 00:39:40,333
- She just went downhill
very fast all of a sudden.
679
00:39:40,333 --> 00:39:42,800
She couldn't pick up a knife,
pick up a fork,
680
00:39:42,800 --> 00:39:45,733
couldn't write with a pencil,
681
00:39:45,733 --> 00:39:51,300
and this all transpired
in the timeframe of overnight.
682
00:39:53,800 --> 00:39:55,767
- They insisted
that she's making it up
683
00:39:55,767 --> 00:39:58,467
and that she was gonna have
to go on psychiatric medication
684
00:39:58,467 --> 00:39:59,433
if she didn't stop it.
685
00:40:11,000 --> 00:40:12,167
Rock bottom, to me,
686
00:40:12,167 --> 00:40:15,667
was that summer
before we went to see Dr. Jones.
687
00:40:17,700 --> 00:40:18,867
She couldn't hold her head up.
688
00:40:18,867 --> 00:40:20,200
She couldn't sit up.
689
00:40:20,200 --> 00:40:24,333
She couldn't talk anymore,
690
00:40:24,333 --> 00:40:26,000
and not knowing
if they were gonna keep her
691
00:40:26,000 --> 00:40:27,000
on the medication,
692
00:40:27,000 --> 00:40:28,167
'cause they kept saying to me,
693
00:40:28,167 --> 00:40:29,667
"No, only 28 days,"
694
00:40:29,667 --> 00:40:32,433
and I said,
"Well, I'm going to Connecticut,
695
00:40:32,433 --> 00:40:35,233
and I'm gonna see
this other doctor,"
696
00:40:35,233 --> 00:40:37,633
and them fighting me and saying,
"Well, he's controversial,"
697
00:40:37,633 --> 00:40:40,067
and something in me just
kept saying, "No, you're going."
698
00:40:42,133 --> 00:40:43,767
- The thing
that gives me most joy
699
00:40:43,767 --> 00:40:48,067
in treating
the children with Lyme disease
700
00:40:48,067 --> 00:40:50,933
is seeing them get well
and cured.
701
00:40:52,333 --> 00:40:54,333
I don't consider it a job.
702
00:40:54,333 --> 00:40:56,000
I consider it to be,
more or less,
703
00:40:56,000 --> 00:40:57,733
like a calling than anything.
704
00:41:01,500 --> 00:41:04,667
My practice consists
of over 9,000 children
705
00:41:04,667 --> 00:41:10,667
from every state in America,
from South America,
706
00:41:10,667 --> 00:41:12,933
from almost
every province in Canada,
707
00:41:12,933 --> 00:41:16,833
and from every continent abroad.
708
00:41:16,833 --> 00:41:19,600
The practice is growing
709
00:41:19,600 --> 00:41:23,833
at the rate of five to ten
new encounters per day.
710
00:41:23,833 --> 00:41:26,700
They have very complex,
serious illnesses.
711
00:41:26,700 --> 00:41:30,733
However, it's nice
to see them get well.
712
00:41:40,867 --> 00:41:42,467
- Some of
the Lyme-literate physicians
713
00:41:42,467 --> 00:41:48,167
are practicing medicine
that is widely outside
714
00:41:48,167 --> 00:41:50,200
of the standards
of medical care.
715
00:41:50,200 --> 00:41:52,600
The small group
of physicians feel
716
00:41:52,600 --> 00:41:54,433
that one can diagnose
Lyme disease
717
00:41:54,433 --> 00:41:56,267
on clinical grounds alone,
718
00:41:56,267 --> 00:42:00,167
not necessarily relying
on any laboratory data,
719
00:42:00,167 --> 00:42:01,600
and then, furthermore,
720
00:42:01,600 --> 00:42:05,067
long-term antibiotics
are the right treatment.
721
00:42:05,067 --> 00:42:06,333
That has never been shown
722
00:42:06,333 --> 00:42:09,767
in any double-blind,
controlled, randomized trial.
723
00:42:09,767 --> 00:42:11,333
- I've worked here
for eight years,
724
00:42:11,333 --> 00:42:13,600
and I've seen many patients
come and go,
725
00:42:13,600 --> 00:42:15,800
and I've seen
the success he's had
726
00:42:15,800 --> 00:42:17,800
in his treatment regiment.
727
00:42:17,800 --> 00:42:21,200
Yes, we do treat aggressively,
but I think that's what works.
728
00:42:23,933 --> 00:42:27,067
- In a way, it's like
the perfect storm of diseases,
729
00:42:27,067 --> 00:42:29,300
because of the timing
of a couple different events
730
00:42:29,300 --> 00:42:31,833
in the history of medicine.
731
00:42:31,833 --> 00:42:34,967
1980, the United States
said it was okay
732
00:42:34,967 --> 00:42:38,900
for government institutions
and universities to patent
733
00:42:38,900 --> 00:42:41,233
and profit from live organisms.
734
00:42:43,100 --> 00:42:46,067
So the Lyme disease organism
was discovered in 1981,
735
00:42:46,067 --> 00:42:47,967
and all of a sudden,
there was the equivalent
736
00:42:47,967 --> 00:42:49,500
of an Oklahoma land grab,
737
00:42:49,500 --> 00:42:51,500
people looking
under their microscopes,
738
00:42:51,500 --> 00:42:52,933
patenting pieces
of the organism,
739
00:42:52,933 --> 00:42:54,700
so the people that are credited
740
00:42:54,700 --> 00:42:57,100
for being
the Lyme disease experts
741
00:42:57,100 --> 00:42:58,300
no longer shared information
742
00:42:58,300 --> 00:43:01,667
about a new,
really dangerous pathogen.
743
00:43:01,667 --> 00:43:03,200
They hoarded the information
744
00:43:03,200 --> 00:43:06,600
because they wanted
to protect future profits.
745
00:43:06,600 --> 00:43:09,233
- You have professors,
especially in the biosciences,
746
00:43:09,233 --> 00:43:11,167
are trying
to take their discoveries,
747
00:43:11,167 --> 00:43:13,300
often made
on the federal nickel,
748
00:43:13,300 --> 00:43:14,967
and take them private.
749
00:43:14,967 --> 00:43:17,633
They patent them.
They start firms.
750
00:43:21,167 --> 00:43:25,067
What's commercialize-able
is driving the research agenda
751
00:43:25,067 --> 00:43:26,700
in too many cases,
752
00:43:26,700 --> 00:43:29,867
not what's medically necessary
and what's medically useful.
753
00:43:32,467 --> 00:43:35,867
- The other thing that happened
was the rise of managed care.
754
00:43:35,867 --> 00:43:38,167
Insurance companies
and HMOs realized
755
00:43:38,167 --> 00:43:41,467
that if they can get researchers
in universities
756
00:43:41,467 --> 00:43:44,300
to define diseases
and write guidelines
757
00:43:44,300 --> 00:43:46,067
for diseases a certain way,
758
00:43:46,067 --> 00:43:49,167
then they could help manage
the escalating medical costs,
759
00:43:49,167 --> 00:43:51,300
and really, what this means is,
760
00:43:51,300 --> 00:43:54,233
the people who previously
protected public health,
761
00:43:54,233 --> 00:43:56,800
so, like, the CDC,
the Centers for Disease Control,
762
00:43:56,800 --> 00:43:59,067
and the NIH and universities,
763
00:43:59,067 --> 00:44:01,533
who didn't have
any commercial interests,
764
00:44:01,533 --> 00:44:03,700
all of a sudden, they were
partners with big pharma,
765
00:44:03,700 --> 00:44:06,267
and their motivations
completely changed.
766
00:44:06,267 --> 00:44:09,833
We no longer had oversight
and checks and balances
767
00:44:09,833 --> 00:44:12,200
in our scientific system
in the U.S.
768
00:44:12,200 --> 00:44:16,067
It was rife with conflicts,
and just now, 20 years later,
769
00:44:16,067 --> 00:44:17,433
we're beginning to see
what happens
770
00:44:17,433 --> 00:44:20,067
when you have unchecked
conflicts in medical care.
771
00:44:31,867 --> 00:44:33,567
- Okay, today is July 5th,
772
00:44:33,567 --> 00:44:35,467
and Mandy's having
a little bit of an episode.
773
00:44:47,933 --> 00:44:50,567
- It's a feeling of being
trapped within your own body.
774
00:44:53,267 --> 00:44:56,700
So it's like being wrapped up
real tight like a mummy
775
00:44:56,700 --> 00:44:59,067
so you can't move anything
776
00:44:59,067 --> 00:45:02,300
and then having tape
across your mouth
777
00:45:02,300 --> 00:45:04,267
so you can't say anything.
778
00:45:09,467 --> 00:45:12,733
But reality is,
you got to kill 'em.
779
00:45:14,233 --> 00:45:18,700
You got to kill the little bugs,
because they're taking over.
780
00:45:23,400 --> 00:45:26,500
No, no, I was okay.
781
00:45:26,500 --> 00:45:29,867
I was adapting my life
to what was going on.
782
00:45:29,867 --> 00:45:33,067
Now I want it back,
so it's a war.
783
00:45:46,733 --> 00:45:51,867
- It got so bad after the tour,
'cause I really did some damage,
784
00:45:51,867 --> 00:45:54,500
wasn't willing to admit it
to myself or anyone.
785
00:45:56,500 --> 00:45:59,700
I'm in Seattle, Washington,
to seek Dr. Klinghardt,
786
00:45:59,700 --> 00:46:03,567
one of the foremost specialists
on Lyme disease.
787
00:46:03,567 --> 00:46:05,300
This is great.
I feel horrible.
788
00:46:05,300 --> 00:46:06,733
It's perfect.
789
00:46:06,733 --> 00:46:09,133
Ugh.
790
00:46:09,133 --> 00:46:11,767
He's the one
that I respect the most.
791
00:46:11,767 --> 00:46:13,167
He's the one that I trust.
792
00:46:15,067 --> 00:46:19,433
I've purposely not let myself
fall into the whole trap
793
00:46:19,433 --> 00:46:21,900
of doctor after doctor
and treatment after treatment,
794
00:46:21,900 --> 00:46:25,167
because I'm waiting
for the right one.
795
00:46:26,967 --> 00:46:29,567
- Come on back, Dana.
796
00:46:29,567 --> 00:46:31,967
- Look at this guy.
797
00:46:31,967 --> 00:46:34,067
- Hi.
- I'm so happy.
798
00:46:37,733 --> 00:46:38,967
It's nice to see you too.
799
00:46:44,567 --> 00:46:46,300
to be a better doctor to you.
800
00:46:46,300 --> 00:46:48,633
- So how do I explain
seven years of--
801
00:46:48,633 --> 00:46:50,333
- Okay, so you've been ill
for seven years.
802
00:46:50,333 --> 00:46:51,533
- Yeah.
803
00:46:51,533 --> 00:46:52,767
- 37.
804
00:46:52,767 --> 00:46:55,167
- What have you done
in terms of treatment?
805
00:46:55,167 --> 00:46:58,100
- When I found out,
I started antibiotics.
806
00:46:58,100 --> 00:47:00,733
I did six months,
and I was so ill,
807
00:47:00,733 --> 00:47:05,067
and I just didn't see it
as an answer.
808
00:47:05,067 --> 00:47:07,267
- Lyme disease is one
of the many microbes
809
00:47:07,267 --> 00:47:10,800
that has entered our system,
and I feel, as a physician,
810
00:47:10,800 --> 00:47:13,467
that things are getting
to a degree that's serious.
811
00:47:13,467 --> 00:47:15,533
We're watching
other mammals die out,
812
00:47:15,533 --> 00:47:17,467
and kind of think,
"Well, I'm glad that's not me."
813
00:47:17,467 --> 00:47:21,467
However, as our environment
becomes increasingly polluted,
814
00:47:21,467 --> 00:47:23,233
so do our bodies,
815
00:47:23,233 --> 00:47:25,433
and then we'll grow
the bugs in us
816
00:47:25,433 --> 00:47:28,700
that are not compatible
with human life anymore.
817
00:47:31,467 --> 00:47:33,233
- So you have
a tremendous amount
818
00:47:33,233 --> 00:47:35,433
of inflammation in the gut?
819
00:47:35,433 --> 00:47:36,633
The Lyme disease, you know,
820
00:47:36,633 --> 00:47:38,400
leads to a suppression
of the immune system,
821
00:47:38,400 --> 00:47:40,200
and then you
grow these things in you
822
00:47:40,200 --> 00:47:41,433
that we're always exposed to.
823
00:47:41,433 --> 00:47:43,800
So I'm just
gonna first do just a few
824
00:47:43,800 --> 00:47:47,700
neurological tests on you.
825
00:47:47,700 --> 00:47:52,067
So you have a little bit
borderline Babinski reflex.
826
00:47:52,067 --> 00:47:53,733
That's an upper
motor neuron sign.
827
00:47:53,733 --> 00:47:56,300
It means, you know,
sort of that significant levels
828
00:47:56,300 --> 00:47:59,733
of toxicity
in the spinal cord or brain.
829
00:47:59,733 --> 00:48:04,900
It is a way for me to stage
how close you are
830
00:48:04,900 --> 00:48:08,300
to possibly developing, like,
a more serious thing,
831
00:48:08,300 --> 00:48:09,600
like MS, you know.
832
00:48:09,600 --> 00:48:11,267
Older people
often get Parkinson's
833
00:48:11,267 --> 00:48:13,933
after they've had
undiagnosed Lyme, you know,
834
00:48:13,933 --> 00:48:15,167
or Alzheimer's.
835
00:48:15,167 --> 00:48:17,367
Younger people tend to,
especially women,
836
00:48:17,367 --> 00:48:18,800
tend to get MS.
837
00:48:18,800 --> 00:48:21,433
- That really struck me today
838
00:48:21,433 --> 00:48:26,533
how much I've been
in denial of this illness.
839
00:48:26,533 --> 00:48:30,300
I mean, I've been feeling
really twitchy and just shaky,
840
00:48:30,300 --> 00:48:34,900
a lot
of neurological stuff that--
841
00:48:34,900 --> 00:48:36,967
it's like
I can't deny it anymore.
842
00:48:36,967 --> 00:48:42,600
It's becoming very visible,
so I think I'm just in time.
843
00:48:42,600 --> 00:48:45,967
- You know, as a warning sign,
this is not a mild situation.
844
00:48:45,967 --> 00:48:48,300
You know, sort of like--
you have to do--
845
00:48:48,300 --> 00:48:49,733
within the next few months,
846
00:48:49,733 --> 00:48:52,967
you have to resolve the issues
that you can resolve, yeah?
847
00:48:52,967 --> 00:48:54,567
You have to promise that to me.
848
00:48:54,567 --> 00:48:55,867
- I'm ready.
849
00:48:55,867 --> 00:48:57,667
- Yeah.
850
00:48:57,667 --> 00:48:59,433
It feels like just emergency.
851
00:48:59,433 --> 00:49:01,567
It's just a panic in my body
852
00:49:01,567 --> 00:49:05,100
that I've learned
to just walk around with.
853
00:49:05,100 --> 00:49:06,467
Yeah, this is Dana.
854
00:49:06,467 --> 00:49:09,933
I am moving into 314.
855
00:49:11,433 --> 00:49:13,900
I finally feel like
I can let go of it
856
00:49:13,900 --> 00:49:17,300
and give it to somebody else
to take.
857
00:49:17,300 --> 00:49:19,667
There's someone to take my hand
and get me through it.
858
00:49:19,667 --> 00:49:21,367
I really felt like that today.
859
00:49:24,700 --> 00:49:26,900
I can't believe
I moved to Seattle.
860
00:49:26,900 --> 00:49:28,800
This is so crazy.
861
00:49:38,367 --> 00:49:40,433
- The spirochete
that causes Lyme disease
862
00:49:40,433 --> 00:49:44,567
is Borrelia burgdorferi
and related Borrelia.
863
00:49:44,567 --> 00:49:48,900
The model that I have used
to try to understand
864
00:49:48,900 --> 00:49:52,467
all of the possible things
that Lyme disease can do
865
00:49:52,467 --> 00:49:53,900
is the syphilis model.
866
00:49:53,900 --> 00:49:57,900
Stokes, Modern Clinical
Syphilology, 1945,
867
00:49:57,900 --> 00:49:59,400
W.B. Saunders, publisher.
868
00:49:59,400 --> 00:50:03,100
It gets into every organ system
of the body,
869
00:50:03,100 --> 00:50:05,833
and there are chapters on
manifestations in the skin,
870
00:50:05,833 --> 00:50:09,600
manifestations in dead babies,
manifestations in the bone,
871
00:50:09,600 --> 00:50:15,767
manifestations in the brain,
and particularly, dementia,
872
00:50:15,767 --> 00:50:19,333
'cause dementia in syphilis
was general paresis,
873
00:50:19,333 --> 00:50:23,000
and general paresis
is as close as you could come
874
00:50:23,000 --> 00:50:25,500
to a carbon copy
of Alzheimer's disease.
875
00:50:25,500 --> 00:50:27,867
The diseases
are exactly the same.
876
00:50:27,867 --> 00:50:33,467
If a spirochete, syphilis,
could cause dementia,
877
00:50:33,467 --> 00:50:35,800
why couldn't
the Borrelia spirochete,
878
00:50:35,800 --> 00:50:39,067
over a long, long,
long period of time,
879
00:50:39,067 --> 00:50:40,200
cause Alzheimer's disease?
880
00:50:43,800 --> 00:50:48,700
I extracted DNA from ten
Alzheimer brains that came
881
00:50:48,700 --> 00:50:50,867
from the Harvard University
brain bank.
882
00:50:50,867 --> 00:50:56,533
These are the Harvard brain
DNA extracts in this tube.
883
00:50:56,533 --> 00:50:57,733
Using molecular methods,
884
00:50:57,733 --> 00:51:00,067
I was able to find the DNA
of the spirochete
885
00:51:00,067 --> 00:51:02,833
which causes Lyme disease
in seven out of ten
886
00:51:02,833 --> 00:51:06,367
of the Alzheimer brain specimens
that we received from Harvard.
887
00:51:06,367 --> 00:51:07,300
That's incredible.
888
00:51:13,433 --> 00:51:17,500
The results of the experiment
could not have been predicted
889
00:51:17,500 --> 00:51:19,100
in anybody's imagination.
890
00:51:19,100 --> 00:51:23,400
When seven Alzheimer brains
gave me, essentially,
891
00:51:23,400 --> 00:51:26,900
the same thing,
which is part spirochetal,
892
00:51:26,900 --> 00:51:29,133
part human,
linked up in one molecule,
893
00:51:29,133 --> 00:51:31,200
I about fell off my chair.
894
00:51:41,167 --> 00:51:44,433
If my dream comes true someday,
895
00:51:44,433 --> 00:51:46,867
that will redefine
the practice of medicine,
896
00:51:46,867 --> 00:51:51,067
and that will redefine the lives
of millions of people.
897
00:51:55,067 --> 00:51:56,433
Since spirochetes are the cause
898
00:51:56,433 --> 00:51:59,067
of neurodegenerative diseases
in syphilis,
899
00:51:59,067 --> 00:52:01,700
could it be
that this spirochetal infection,
900
00:52:01,700 --> 00:52:04,300
Lyme disease,
is partly or wholly responsible
901
00:52:04,300 --> 00:52:07,667
for some of the neurologic
degenerative diseases we face
902
00:52:07,667 --> 00:52:08,833
in this century?
903
00:52:08,833 --> 00:52:11,233
Alzheimer's,
Lou Gehrig's disease,
904
00:52:11,233 --> 00:52:14,333
Parkinson's disease,
multiple sclerosis,
905
00:52:14,333 --> 00:52:19,100
those are named conditions
for which no cause is now known.
906
00:52:24,133 --> 00:52:26,900
- We never had a--
in the last five years,
907
00:52:26,900 --> 00:52:31,067
a single MS patient,
a single ALS patient,
908
00:52:31,067 --> 00:52:34,600
a single Parkinson's patient
who did not test positive
909
00:52:34,600 --> 00:52:38,467
for Borrelia burgdorferi,
not a single one.
910
00:52:43,800 --> 00:52:47,533
- About three years ago,
I became ill with a disease
911
00:52:47,533 --> 00:52:51,233
that was ultimately thought
to be ALS or Lou Gehrig disease
912
00:52:51,233 --> 00:52:55,267
and had prepared to die
within about two years' time.
913
00:53:04,067 --> 00:53:05,567
My neurologist tells me
914
00:53:05,567 --> 00:53:08,700
that I was progressing
so rapidly that,
915
00:53:08,700 --> 00:53:12,133
without the diagnosis
of Lyme disease and antibiotics,
916
00:53:12,133 --> 00:53:15,933
I would have continued
to decline, losing strength,
917
00:53:15,933 --> 00:53:17,667
eventually becoming bed bound,
918
00:53:17,667 --> 00:53:21,233
eventually unable
to talk or swallow or breathe,
919
00:53:21,233 --> 00:53:23,833
and would have died
in a matter of a couple years
920
00:53:23,833 --> 00:53:27,400
just like anybody else with ALS,
921
00:53:27,400 --> 00:53:31,367
so I was started on high doses
of intravenous antibiotics
922
00:53:31,367 --> 00:53:34,467
only to see what would happen
with no guarantees.
923
00:53:36,867 --> 00:53:38,867
To our amazement,
within a month,
924
00:53:38,867 --> 00:53:40,333
my energy improved,
925
00:53:40,333 --> 00:53:42,633
so instead of being exhausted
in an hour,
926
00:53:42,633 --> 00:53:44,067
I could be up and about
927
00:53:44,067 --> 00:53:46,767
and active
for four or five hours.
928
00:53:46,767 --> 00:53:48,500
We're now two years out,
929
00:53:48,500 --> 00:53:51,433
and I find that if I go off
of the antibiotics,
930
00:53:51,433 --> 00:53:53,067
I lose stamina,
931
00:53:53,067 --> 00:53:55,833
and I'm not yet back
to my full self,
932
00:53:55,833 --> 00:53:58,300
but the change
is absolutely dramatic.
933
00:54:12,100 --> 00:54:15,067
- I said,
"I'm not getting tested."
934
00:54:15,067 --> 00:54:16,267
I said, "There's no way.
935
00:54:18,100 --> 00:54:20,233
"There's no way I have Lyme,
because I've been told
936
00:54:20,233 --> 00:54:23,567
by the best doctors
that I have Parkinson's."
937
00:54:26,567 --> 00:54:28,733
My name is Ben Petrick.
938
00:54:28,733 --> 00:54:31,633
Baseball was kind of,
like, my life.
939
00:54:31,633 --> 00:54:34,233
I went from being
a gifted athlete to, you know,
940
00:54:34,233 --> 00:54:37,967
there's times when I--
it's hard to put a shirt on.
941
00:54:46,567 --> 00:54:49,100
I've been out of the game now
for almost two years.
942
00:54:55,267 --> 00:54:57,767
When you're diagnosed
with a disease like Parkinson's,
943
00:54:57,767 --> 00:54:59,367
it's like a slow death sentence.
944
00:54:59,367 --> 00:55:00,733
That's kind of what
you feel like.
945
00:55:00,733 --> 00:55:02,267
There's no cure for it.
946
00:55:02,267 --> 00:55:05,233
It's just kind of
a slow deterioration
947
00:55:05,233 --> 00:55:06,400
of your former self.
948
00:55:11,967 --> 00:55:13,067
Recently, in the past month,
949
00:55:13,067 --> 00:55:15,333
I have been tested
for Lyme disease,
950
00:55:15,333 --> 00:55:16,967
and the test came back positive,
951
00:55:16,967 --> 00:55:20,067
and so I've gone and seen
Dr. Martz in Colorado Springs.
952
00:55:24,733 --> 00:55:26,133
We're scared.
953
00:55:26,133 --> 00:55:28,500
My wife and I are sitting there
going, "Do we want to do this?"
954
00:55:28,500 --> 00:55:31,700
'cause they're talking about
sticking something in my vein
955
00:55:31,700 --> 00:55:33,067
that's gonna go
into my big artery
956
00:55:33,067 --> 00:55:34,200
that's gonna go into my heart.
957
00:55:34,200 --> 00:55:35,567
I'm going, "What?"
958
00:55:35,567 --> 00:55:37,667
So, you know,
I said to Dr. Martz--
959
00:55:37,667 --> 00:55:39,467
and Dr. Martz is phenomenal,
960
00:55:39,467 --> 00:55:42,067
and his story
is just miraculous--
961
00:55:42,067 --> 00:55:44,067
and I said, "Should I do this?"
962
00:55:44,067 --> 00:55:47,367
And he said, "Ben, if you were
a part of my family,
963
00:55:47,367 --> 00:55:49,933
"I would chain you down
and not let you leave here
964
00:55:49,933 --> 00:55:50,867
until you have this done."
965
00:56:03,433 --> 00:56:05,067
Six months
into the Lyme treatment,
966
00:56:05,067 --> 00:56:07,200
it's, without a doubt, better.
967
00:56:07,200 --> 00:56:09,700
There's been no question
in my mind.
968
00:56:09,700 --> 00:56:12,067
I feel like I'm getting back
to being myself.
969
00:56:13,767 --> 00:56:16,067
Compared to what I had been
in the past, it's--
970
00:56:16,067 --> 00:56:18,700
it's--I mean, I think
it's night and day.
971
00:56:43,700 --> 00:56:45,300
- Okay.
972
00:56:50,667 --> 00:56:53,333
What I'm doing right--
r-right now
973
00:56:53,333 --> 00:56:56,067
is sitting in my wheelchair.
974
00:56:59,233 --> 00:57:02,567
Sean doesn't like
to videotape it.
975
00:57:05,300 --> 00:57:09,833
So we've gotten
in a couple tiffs about that,
976
00:57:09,833 --> 00:57:15,667
'cause I think it's important
for other people to see this.
977
00:57:19,633 --> 00:57:22,200
- There are times when I feel
like I need to get away,
978
00:57:22,200 --> 00:57:26,167
not that I'm trying
to run away from her, but that--
979
00:57:26,167 --> 00:57:27,433
- It's just too much.
980
00:57:32,967 --> 00:57:35,100
- Sometimes I need to go
and do the things
981
00:57:35,100 --> 00:57:37,167
that I used to do
before this started
982
00:57:37,167 --> 00:57:38,167
just to feel like,
983
00:57:38,167 --> 00:57:40,433
"Okay, that life
is still there."
984
00:57:40,433 --> 00:57:42,500
You know, I mean,
just like her--
985
00:57:42,500 --> 00:57:44,633
- That feeling's there
for me too, and I just can't.
986
00:57:44,633 --> 00:57:45,567
- I know.
987
00:57:47,867 --> 00:57:49,467
- We were told
it was gonna be a long road.
988
00:57:49,467 --> 00:57:54,500
That doesn't mean that I don't
worry about it driving a wedge.
989
00:57:54,500 --> 00:57:56,067
Doesn't mean
that I don't think that,
990
00:57:56,067 --> 00:57:58,333
maybe, at some point,
Sean might change his mind.
991
00:58:46,667 --> 00:58:47,867
- Now.
992
00:58:47,867 --> 00:58:49,367
All you've got.
Just all you've got.
993
00:58:49,367 --> 00:58:52,067
Come on.
994
00:58:53,933 --> 00:58:55,933
- There you go,
and back in.
995
00:59:00,067 --> 00:59:02,100
- Come on. Come on. Come on.
Come on. Come on. Come on.
996
00:59:08,233 --> 00:59:11,067
- I'm extremely nervous
about having this child.
997
00:59:11,067 --> 00:59:12,667
All of the tests
that we have to do,
998
00:59:12,667 --> 00:59:15,733
the fear that he'll come out
and he won't be able to breathe
999
00:59:15,733 --> 00:59:18,333
or there'll be something that's
happened from the Lyme infection
1000
00:59:18,333 --> 00:59:19,333
that we don't know about.
1001
00:59:19,333 --> 00:59:21,200
It is very, very scary.
1002
00:59:21,200 --> 00:59:23,700
- Elise, more, more, more, more,
more, more, more, more.
1003
00:59:23,700 --> 00:59:25,367
- Oh, wow.
Nice.
1004
00:59:25,367 --> 00:59:26,367
- Yeah, yeah, okay, okay.
1005
00:59:27,567 --> 00:59:29,267
- Elise, push.
Here comes your baby.
1006
00:59:34,933 --> 00:59:37,067
- It's okay.
- There you go.
1007
00:59:39,400 --> 00:59:41,067
Is he breathing?
1008
00:59:42,867 --> 00:59:44,867
- Oh, look at his hands moving.
1009
00:59:47,100 --> 00:59:48,300
- Placenta sample.
Here.
1010
00:59:51,700 --> 00:59:53,067
- Look, I'm right here.
1011
00:59:58,367 --> 00:59:59,700
Hi.
1012
00:59:59,700 --> 01:00:02,500
Oh, my God. Hi.
1013
01:00:04,100 --> 01:00:05,400
I can't believe it.
1014
01:00:25,900 --> 01:00:27,133
- We would like to welcome you
1015
01:00:27,133 --> 01:00:29,600
to John F. Kennedy
International Airport, New York.
1016
01:00:29,600 --> 01:00:34,367
The local time here
in New York is 9:30 a.m.
1017
01:00:37,500 --> 01:00:40,967
- Well, here we are
in East Hampton, New York,
1018
01:00:40,967 --> 01:00:42,733
a place I probably
never would have seen
1019
01:00:42,733 --> 01:00:45,433
if I hadn't gotten Lyme disease.
1020
01:00:45,433 --> 01:00:48,767
I've come here
all the way from California
1021
01:00:48,767 --> 01:00:52,700
to see one of the top
Lyme specialists in the world,
1022
01:00:52,700 --> 01:00:55,067
and I've been coming here
for the last four years.
1023
01:00:57,133 --> 01:01:00,767
Are you nervous riding with me?
You should be.
1024
01:01:04,167 --> 01:01:08,833
As a park ranger before Lyme,
I was a highly confident person.
1025
01:01:08,833 --> 01:01:10,067
What Lyme did to me is,
1026
01:01:10,067 --> 01:01:14,233
it sort of removed
my ability to multitask.
1027
01:01:14,233 --> 01:01:16,300
Now I can sort of do
one thing at a time
1028
01:01:16,300 --> 01:01:20,300
if I really focus on it.
1029
01:01:20,300 --> 01:01:22,067
See, we're not where
we should be right now.
1030
01:01:22,067 --> 01:01:25,500
Do you notice this?
1031
01:01:25,500 --> 01:01:26,933
That's a really bad sign.
1032
01:01:36,400 --> 01:01:39,300
Frustrating, you know?
1033
01:01:39,300 --> 01:01:41,200
It's frustrating
to be this far down the road--
1034
01:01:41,200 --> 01:01:42,933
now it's been
almost eight years--
1035
01:01:42,933 --> 01:01:47,300
and to still be
not back to normal.
1036
01:02:03,367 --> 01:02:05,800
- When did you start
the combination therapy?
1037
01:02:05,800 --> 01:02:06,900
Last year, right?
1038
01:02:06,900 --> 01:02:08,267
- Yeah, I've been on it
for a year.
1039
01:02:08,267 --> 01:02:11,433
- Are you still improving,
or have you hit a plateau?
1040
01:02:11,433 --> 01:02:13,933
- You know, the truth is,
I've hit a plateau.
1041
01:02:13,933 --> 01:02:16,333
- How much antibiotic
is enough?
1042
01:02:16,333 --> 01:02:18,400
How many symptoms
that are still present
1043
01:02:18,400 --> 01:02:20,333
reflect an active,
ongoing infection
1044
01:02:20,333 --> 01:02:22,333
versus just damage
that's gonna be there forever?
1045
01:02:22,333 --> 01:02:25,333
Somehow, the spirochete
can learn to live
1046
01:02:25,333 --> 01:02:26,867
within the body
and not be killed.
1047
01:02:26,867 --> 01:02:28,267
It can hide
from the immune system.
1048
01:02:28,267 --> 01:02:29,600
It can hide
from the antibiotics,
1049
01:02:29,600 --> 01:02:30,667
and both at the same time,
1050
01:02:30,667 --> 01:02:32,967
and there are patients
who sometimes
1051
01:02:32,967 --> 01:02:35,600
are in open-ended years
of therapy
1052
01:02:35,600 --> 01:02:37,067
because of this very problem.
1053
01:02:37,067 --> 01:02:38,167
- We have not been able
1054
01:02:38,167 --> 01:02:40,800
to demonstrate the persistence
of the bacteria,
1055
01:02:40,800 --> 01:02:44,500
so to treat
for months and months
1056
01:02:44,500 --> 01:02:48,467
is really based on guesswork,
on conjecture,
1057
01:02:48,467 --> 01:02:51,400
and not based
on any scientific data.
1058
01:02:51,400 --> 01:02:53,533
- If I had not been able
to find doctors
1059
01:02:53,533 --> 01:02:56,533
who would soak me
in antibiotics for years,
1060
01:02:56,533 --> 01:02:58,800
you wouldn't be talking
to the guy
1061
01:02:58,800 --> 01:03:00,967
that you're talking to
right now.
1062
01:03:00,967 --> 01:03:05,167
The folk myth is somehow that
antibiotics are bad for you.
1063
01:03:05,167 --> 01:03:06,200
I just have to say,
1064
01:03:06,200 --> 01:03:07,533
they're certainly
not bad for you
1065
01:03:07,533 --> 01:03:08,700
if you've got a fatal infection.
1066
01:03:14,533 --> 01:03:17,333
- This disease has taken over my
whole life.
1067
01:03:17,333 --> 01:03:18,967
- It's been a horrible journey.
1068
01:03:21,133 --> 01:03:24,400
- Every day, driving home,
I would think of driving a car
1069
01:03:24,400 --> 01:03:26,333
off the road
or something like that.
1070
01:03:26,333 --> 01:03:29,800
- I said to my mom, "You know,
it would be okay with me
1071
01:03:29,800 --> 01:03:32,567
if I didn't wake up this time."
1072
01:03:32,567 --> 01:03:34,233
- I said,
"God, take me home tonight."
1073
01:03:34,233 --> 01:03:36,833
It was not even a request.
It was a demand.
1074
01:03:36,833 --> 01:03:39,067
What's gonna happen to me?
1075
01:03:39,067 --> 01:03:40,933
I don't want to die."
1076
01:03:40,933 --> 01:03:42,733
- I am scared.
1077
01:03:42,733 --> 01:03:46,933
I'm very sad,
'cause I don't know what to do.
1078
01:03:46,933 --> 01:03:48,300
- I'm going downhill,
1079
01:03:48,300 --> 01:03:50,600
gradually down, down, down,
down, down.
1080
01:03:50,600 --> 01:03:53,267
- The worst part is knowing
1081
01:03:53,267 --> 01:03:55,800
that you're just
not a normal person.
1082
01:04:06,900 --> 01:04:08,400
- Chronic Lyme disease,
1083
01:04:08,400 --> 01:04:09,967
it's kind of
the disease du jour.
1084
01:04:12,333 --> 01:04:14,533
There's no evidence
that I can find
1085
01:04:14,533 --> 01:04:16,767
to support the concept
1086
01:04:16,767 --> 01:04:20,433
that there is
a chronic Borrelia infection
1087
01:04:20,433 --> 01:04:21,367
after treatment.
1088
01:04:23,400 --> 01:04:25,567
That kind of situation
has been referred to
1089
01:04:25,567 --> 01:04:29,800
as post-Lyme syndrome
or post-Lyme symptoms.
1090
01:04:31,500 --> 01:04:34,300
Those symptoms may be due
to the aches and pains
1091
01:04:34,300 --> 01:04:35,867
of kind of daily living.
1092
01:04:41,267 --> 01:04:43,400
- The Infectious Diseases
Society of America
1093
01:04:43,400 --> 01:04:46,500
just published
their Lyme disease diagnosis
1094
01:04:46,500 --> 01:04:48,067
and treatment guidelines,
1095
01:04:48,067 --> 01:04:52,067
and it's been a huge disaster
for the Lyme disease community.
1096
01:04:56,300 --> 01:04:59,500
They say that Lyme is easy
to treat and easy to cure.
1097
01:04:59,500 --> 01:05:01,567
They're saying
that two weeks, typically,
1098
01:05:01,567 --> 01:05:03,400
will cure most cases of Lyme,
1099
01:05:03,400 --> 01:05:06,633
and they say that chronic Lyme
doesn't exist.
1100
01:05:06,633 --> 01:05:07,933
If people have symptoms
1101
01:05:07,933 --> 01:05:11,133
beyond one two- to four-week
dose of antibiotics,
1102
01:05:11,133 --> 01:05:12,267
they have something else,
1103
01:05:12,267 --> 01:05:13,767
and they send them
to a psychiatrist
1104
01:05:13,767 --> 01:05:16,167
or give them some pain meds
or some steroids
1105
01:05:16,167 --> 01:05:17,100
and send them away.
1106
01:05:20,833 --> 01:05:22,533
- If you look at
the new IDSA guidelines,
1107
01:05:22,533 --> 01:05:24,567
it's a very
threatening document.
1108
01:05:24,567 --> 01:05:25,800
It's very restrictive.
1109
01:05:28,133 --> 01:05:30,633
So it almost was designed
with a purpose in mind
1110
01:05:30,633 --> 01:05:32,700
to restrict
the treatment of Lyme.
1111
01:05:34,633 --> 01:05:36,967
- A handful of people
are pretty much the gatekeepers
1112
01:05:36,967 --> 01:05:40,633
for information
about this disease.
1113
01:05:40,633 --> 01:05:42,367
Out of 400 references
1114
01:05:42,367 --> 01:05:44,567
that they posted
at the back of the guidelines,
1115
01:05:44,567 --> 01:05:46,400
half of them
were based on articles
1116
01:05:46,400 --> 01:05:48,467
that the panelists
or people in their labs
1117
01:05:48,467 --> 01:05:49,800
had actually written,
1118
01:05:49,800 --> 01:05:51,833
so it's not like
they went through and looked at
1119
01:05:51,833 --> 01:05:53,467
the whole body of Lyme research
1120
01:05:53,467 --> 01:05:55,133
to come up with
the best recommendations.
1121
01:05:55,133 --> 01:05:57,167
They looked at
a small group of articles,
1122
01:05:57,167 --> 01:06:00,067
about half of which
were written by themselves.
1123
01:06:00,067 --> 01:06:02,567
- These guidelines are based
1124
01:06:02,567 --> 01:06:05,467
on the best
scientific evidence that--
1125
01:06:05,467 --> 01:06:08,300
from more than 25 years
of study.
1126
01:06:08,300 --> 01:06:11,800
- It completely ignores
a worldwide body of literature
1127
01:06:11,800 --> 01:06:14,267
that is in contradiction
to what they're saying.
1128
01:06:14,267 --> 01:06:16,467
- We're not gonna ignore
good science,
1129
01:06:16,467 --> 01:06:18,700
but the science isn't there.
1130
01:06:21,467 --> 01:06:23,767
- We had begun deliberations,
1131
01:06:23,767 --> 01:06:28,267
and we were going to go over
the late and chronic stage.
1132
01:06:28,267 --> 01:06:31,300
We never got to discuss late
and chronic Lyme disease.
1133
01:06:31,300 --> 01:06:35,500
There seemed to be pressure
from the IDSA
1134
01:06:35,500 --> 01:06:38,733
to put out something,
even though we couldn't agree,
1135
01:06:38,733 --> 01:06:42,600
so what happened was,
Dr. Wormser did take over
1136
01:06:42,600 --> 01:06:44,400
the chairmanship
on the guidelines
1137
01:06:44,400 --> 01:06:45,467
for Lyme disease,
1138
01:06:45,467 --> 01:06:47,500
and we never met again.
1139
01:06:47,500 --> 01:06:49,700
We just said,
"Here are the guidelines,
1140
01:06:49,700 --> 01:06:52,933
and you can sign them
and agree or not."
1141
01:06:55,967 --> 01:06:58,067
- They're written
in almost legalese terms,
1142
01:06:58,067 --> 01:07:01,100
like this could be a document
used in court cases,
1143
01:07:01,100 --> 01:07:02,567
maybe against physicians,
1144
01:07:02,567 --> 01:07:05,700
or maybe for insurance companies
to justify cutting off treatment
1145
01:07:05,700 --> 01:07:07,767
to their patients
'cause these are the guidelines.
1146
01:07:07,767 --> 01:07:12,067
- Really, those guidelines
reflected the idea
1147
01:07:12,067 --> 01:07:14,067
of one or two people,
1148
01:07:14,067 --> 01:07:18,800
but they've been misused
by insurance companies
1149
01:07:18,800 --> 01:07:22,067
who don't want to pay
for treatments because
1150
01:07:22,067 --> 01:07:23,900
that particular guideline says,
1151
01:07:23,900 --> 01:07:27,267
"We don't know
if chronic Lyme disease exists."
1152
01:07:47,067 --> 01:07:50,067
- Well, the insurance company
has refused to pay
1153
01:07:50,067 --> 01:07:51,867
$10,000 worth of bills
1154
01:07:51,867 --> 01:07:54,467
having to do with my trips
to see Dr. Burrascano.
1155
01:07:56,100 --> 01:07:59,300
They have now required me
to see another doctor.
1156
01:07:59,300 --> 01:08:01,500
This particular doctor
apparently is a fella
1157
01:08:01,500 --> 01:08:04,400
who works mostly
for the insurance company.
1158
01:08:04,400 --> 01:08:07,367
What he'll do will be
to cite the IDSA position
1159
01:08:07,367 --> 01:08:09,833
that there's no such thing
as chronic Lyme disease
1160
01:08:09,833 --> 01:08:11,233
to support a conclusion
1161
01:08:11,233 --> 01:08:14,533
that the insurance company's
already made about me.
1162
01:08:14,533 --> 01:08:15,767
They don't want to pay.
1163
01:08:39,500 --> 01:08:40,900
- Rather than make
the assumption
1164
01:08:40,900 --> 01:08:43,733
that two to four weeks
of antibiotics is enough--
1165
01:08:43,733 --> 01:08:47,767
where did anybody get that idea
from an infectious disease?
1166
01:08:47,767 --> 01:08:50,367
Tuberculosis is not treated
in two to four weeks.
1167
01:08:50,367 --> 01:08:53,967
Hepatitis, a year to treat that.
1168
01:08:53,967 --> 01:08:57,500
HIV, indefinitely.
1169
01:08:57,500 --> 01:09:02,200
So we're not talking about
new concepts.
1170
01:09:02,200 --> 01:09:05,133
We're talking about concepts
that have not been,
1171
01:09:05,133 --> 01:09:07,467
for whatever reason, applied.
1172
01:09:15,367 --> 01:09:17,733
- This doctor's controversial
diagnosis and treatment
1173
01:09:17,733 --> 01:09:20,833
of Lyme disease
with powerful intravenous drugs
1174
01:09:20,833 --> 01:09:23,500
could very well cost him
his medical license.
1175
01:09:23,500 --> 01:09:26,533
- The evidence will show
that Dr. Jemsek believed
1176
01:09:26,533 --> 01:09:30,067
the IDSA guidelines
to be flawed, to be wrong.
1177
01:09:30,067 --> 01:09:32,067
- I respect
the IDSA tremendously.
1178
01:09:32,067 --> 01:09:34,733
I belong to the IDSA.
1179
01:09:34,733 --> 01:09:36,800
The Lyme philosophy
is run by about 12 people
1180
01:09:36,800 --> 01:09:37,933
who have been doing--
1181
01:09:37,933 --> 01:09:39,733
the same 12 people
for the last 15 years,
1182
01:09:39,733 --> 01:09:41,400
and they haven't really
changed anything.
1183
01:09:43,067 --> 01:09:45,467
I tried to influence the IDSA
through a series of letters
1184
01:09:45,467 --> 01:09:47,467
with the president
and the chairman
1185
01:09:47,467 --> 01:09:48,733
of the guidelines committee.
1186
01:09:48,733 --> 01:09:51,567
We pleaded with them
to open up the process
1187
01:09:51,567 --> 01:09:53,467
about Lyme guidelines.
1188
01:09:53,467 --> 01:09:55,633
- He has been working
really hard for the last year
1189
01:09:55,633 --> 01:09:59,267
to try and get the IDSA board
to listen to his suggestions
1190
01:09:59,267 --> 01:10:00,800
for the treatment
of chronic Lyme,
1191
01:10:00,800 --> 01:10:03,833
and now he's before
a medical board review,
1192
01:10:03,833 --> 01:10:07,667
and it makes you wonder,
you know, is this a retaliation?
1193
01:10:07,667 --> 01:10:09,567
- Furthermore,
for each of these patients,
1194
01:10:09,567 --> 01:10:12,033
Dr. Jemsek prescribed
a course of not oral
1195
01:10:12,033 --> 01:10:14,533
but intravenous antibiotics
to be administered
1196
01:10:14,533 --> 01:10:16,967
to the patients
for months on end.
1197
01:10:16,967 --> 01:10:21,500
- Long-term antibiotics
provide no additional benefit,
1198
01:10:21,500 --> 01:10:24,333
and it's not that this is safe.
1199
01:10:24,333 --> 01:10:27,833
There are many complications
to long-term antibiotic therapy.
1200
01:10:27,833 --> 01:10:31,933
- I was a patient of his
for 7 1/2 years,
1201
01:10:31,933 --> 01:10:33,967
diagnosed with Lyme's disease,
1202
01:10:33,967 --> 01:10:36,400
wholeheartedly believed him,
1203
01:10:36,400 --> 01:10:38,133
and never had Lyme's disease.
1204
01:10:38,133 --> 01:10:41,867
- My wife did not sign up
to be a test subject.
1205
01:10:41,867 --> 01:10:45,500
She was told she could be cured
1206
01:10:45,500 --> 01:10:47,367
to the disease
that she supposedly had.
1207
01:10:47,367 --> 01:10:49,833
- Three years ago,
1208
01:10:49,833 --> 01:10:52,300
you wouldn't have thought
she'd live another two months.
1209
01:10:52,300 --> 01:10:53,500
He literally saved her life.
1210
01:10:53,500 --> 01:10:54,500
No question about it.
1211
01:10:56,400 --> 01:10:59,400
- If I hadn't seen Dr. Jemsek,
if he wasn't available,
1212
01:10:59,400 --> 01:11:02,400
I don't know that I'd be here
talking to you.
1213
01:11:02,400 --> 01:11:06,367
- If Dr. Jemsek
doesn't get cleared,
1214
01:11:06,367 --> 01:11:08,167
there's a message
that's gonna be sent
1215
01:11:08,167 --> 01:11:10,967
to the other doctors
in North Carolina
1216
01:11:10,967 --> 01:11:14,767
that it's not safe
to take a Lyme patient on
1217
01:11:14,767 --> 01:11:15,767
and treat them.
1218
01:11:15,767 --> 01:11:18,600
We can't have that happen.
1219
01:11:18,600 --> 01:11:21,333
I don't know what we would do.
1220
01:11:21,333 --> 01:11:22,767
- It is difficult for doctors
1221
01:11:22,767 --> 01:11:24,600
who want to stand up
and help these patients
1222
01:11:24,600 --> 01:11:26,200
because is it
a political disease
1223
01:11:26,200 --> 01:11:27,800
and an economic disease
1224
01:11:27,800 --> 01:11:30,867
as much as it is
a bacterial-borne infection.
1225
01:11:30,867 --> 01:11:34,433
- My office was stormed by
the Board of Nurse Examiners.
1226
01:11:34,433 --> 01:11:36,333
- I got a letter around 2000
1227
01:11:36,333 --> 01:11:39,900
saying that I was a subject
of an investigation.
1228
01:11:39,900 --> 01:11:42,300
- A complaint went in
from a physician
1229
01:11:42,300 --> 01:11:44,633
to the Virginia Board
of Medicine
1230
01:11:44,633 --> 01:11:50,200
stating that I was following
unusual practices in treating
1231
01:11:50,200 --> 01:11:52,067
Lyme disease patients.
1232
01:11:53,867 --> 01:11:55,600
- Here we are in Raleigh,
North Carolina,
1233
01:11:55,600 --> 01:11:58,767
and we're on day two
of the Jemsek trials.
1234
01:11:58,767 --> 01:12:01,133
Oh, we're going.
1235
01:12:01,133 --> 01:12:05,867
- Dr. Jemsek's license
is suspended for one year
1236
01:12:05,867 --> 01:12:09,467
stayed in the conditions
to be determined.
1237
01:12:09,467 --> 01:12:13,233
That concludes the hearing
in this matter.
1238
01:12:14,633 --> 01:12:17,533
- A Charlotte doctor must
surrender his medical license
1239
01:12:17,533 --> 01:12:19,600
for the way he treats
Lyme disease.
1240
01:12:19,600 --> 01:12:22,367
Less than an hour ago,
the state medical board ruled
1241
01:12:22,367 --> 01:12:25,433
that Dr. Joseph Jemsek
acted inappropriately
1242
01:12:25,433 --> 01:12:27,200
when treating some patients.
1243
01:12:27,200 --> 01:12:29,933
The board suspended
his license for one year.
1244
01:12:35,900 --> 01:12:37,633
- I thank you all.
- Well, thank you.
1245
01:12:37,633 --> 01:12:38,933
- Thank you. Thank you.
1246
01:12:49,867 --> 01:12:51,467
- Medical boards
don't act on their own.
1247
01:12:51,467 --> 01:12:54,833
They need a complaint
to initiate an investigation,
1248
01:12:54,833 --> 01:12:56,600
and we've been told
by the medical boards
1249
01:12:56,600 --> 01:12:58,300
that the great majority
of complaints
1250
01:12:58,300 --> 01:12:59,700
don't come
from doctors or patients,
1251
01:12:59,700 --> 01:13:01,500
but they come
from insurance companies
1252
01:13:01,500 --> 01:13:05,233
trying to get rid of doctors
who cost them a lot of money.
1253
01:13:12,833 --> 01:13:14,567
- There has been for many years
1254
01:13:14,567 --> 01:13:17,800
a controversy
within the medical community
1255
01:13:17,800 --> 01:13:20,333
about how best to diagnose
and treat Lyme disease.
1256
01:13:20,333 --> 01:13:24,733
We allege that Dr. Jones
prescribed an antibiotic
1257
01:13:24,733 --> 01:13:28,067
to a patient he did not know
and had never examined.
1258
01:13:28,067 --> 01:13:32,067
- As a mom, my kids were sick.
I left no stone unturned.
1259
01:13:32,067 --> 01:13:34,633
I finally found somebody
that recognized
1260
01:13:34,633 --> 01:13:36,267
what their problem might be.
1261
01:13:36,267 --> 01:13:39,133
It was treated, in my opinion,
appropriately,
1262
01:13:39,133 --> 01:13:41,567
and my kids are better now
because of it.
1263
01:13:44,600 --> 01:13:47,067
This whole thing
is kind of ridiculous, I think.
1264
01:13:47,067 --> 01:13:50,733
It was really nothing more
than a witch hunt
1265
01:13:50,733 --> 01:13:52,200
on behalf of my ex-husband.
1266
01:13:57,233 --> 01:13:58,367
He called me,
1267
01:13:58,367 --> 01:14:00,867
and he said he was going
to lodge a complaint
1268
01:14:00,867 --> 01:14:03,733
against every doctor
that I took the children to
1269
01:14:03,733 --> 01:14:07,800
unless I agreed not to bill him
for half of the medical care.
1270
01:14:09,467 --> 01:14:12,867
- How could my dad
have done this?
1271
01:14:12,867 --> 01:14:14,633
He said, "Well, you don't
have Lyme disease.
1272
01:14:14,633 --> 01:14:17,067
Dr. Jones is just making it up
so he can get money,"
1273
01:14:17,067 --> 01:14:19,733
and I thought,
"You know what? No, he isn't,"
1274
01:14:19,733 --> 01:14:23,500
because I was always sick,
and then, when he told me,
1275
01:14:23,500 --> 01:14:25,900
my brother, and my family
that we had Lyme disease
1276
01:14:25,900 --> 01:14:28,533
and we got treated
for Lyme disease,
1277
01:14:28,533 --> 01:14:30,067
we got so much better.
1278
01:14:30,067 --> 01:14:34,067
- Did you testify contrary
to Dr. Jones' opinion
1279
01:14:34,067 --> 01:14:36,167
in a criminal case
in the last several years?
1280
01:14:36,167 --> 01:14:37,267
- Yes.
1281
01:14:37,267 --> 01:14:39,567
- Did you ever call him
a "nut" in public?
1282
01:14:42,600 --> 01:14:46,700
- Mmm...uh...
1283
01:14:48,400 --> 01:14:51,433
Patients develop
physical complaints,
1284
01:14:51,433 --> 01:14:55,300
but it's got
a psychological basis.
1285
01:15:01,867 --> 01:15:04,800
- Dr. Jones is the best
pediatric Lyme doctor
1286
01:15:04,800 --> 01:15:06,300
in the United States,
1287
01:15:06,300 --> 01:15:07,633
so the implications for me
1288
01:15:07,633 --> 01:15:09,200
is that if my son's Lyme
comes back
1289
01:15:09,200 --> 01:15:11,067
or if we contract it again,
1290
01:15:11,067 --> 01:15:12,600
then what you'll be taking away
1291
01:15:12,600 --> 01:15:16,267
is the one person
that can truly help us.
1292
01:15:16,267 --> 01:15:17,667
What kind of response
would you get
1293
01:15:17,667 --> 01:15:20,933
if this was a kid with cancer?
1294
01:15:20,933 --> 01:15:23,400
Everybody and their mother
would say that this is inhumane.
1295
01:15:25,933 --> 01:15:29,967
- Dr. Jones is not
the heart of the problem.
1296
01:15:29,967 --> 01:15:31,333
I think the opposition,
1297
01:15:31,333 --> 01:15:34,567
they're going to use him
as an example if they can,
1298
01:15:34,567 --> 01:15:37,167
perhaps to frighten
other doctors
1299
01:15:37,167 --> 01:15:40,133
so that they won't want
to get involved in care.
1300
01:15:40,133 --> 01:15:42,967
- I was reviewed
by the investigators
1301
01:15:42,967 --> 01:15:44,800
for four years.
1302
01:15:44,800 --> 01:15:47,167
- As long as I'm not
too well-known,
1303
01:15:47,167 --> 01:15:48,767
it's okay to do what I do,
1304
01:15:48,767 --> 01:15:51,867
but if I would become very
well-known or very outspoken,
1305
01:15:51,867 --> 01:15:54,467
I think that I would probably
lose my medical license.
1306
01:15:54,467 --> 01:15:57,067
- It got to the point
where I would tell people,
1307
01:15:57,067 --> 01:16:01,367
"Don't tell the office you're
coming in because of Lyme."
1308
01:16:01,367 --> 01:16:03,800
- Let's leave this alone.
Just let us do our work.
1309
01:16:03,800 --> 01:16:05,267
If you don't want
to treat that stuff,
1310
01:16:05,267 --> 01:16:07,800
that's fine,
but you can't make it go away.
1311
01:16:07,800 --> 01:16:09,100
It's not going away.
1312
01:16:11,433 --> 01:16:12,767
- Dear Lord
and Heavenly Father,
1313
01:16:12,767 --> 01:16:14,200
thank you for this meal,
1314
01:16:14,200 --> 01:16:17,667
and help it nourish our bodies
and help us advance your kingdom
1315
01:16:17,667 --> 01:16:20,967
and just let the truth prevail
for Dr. Jones
1316
01:16:20,967 --> 01:16:24,267
and help him help others,
in Jesus' name, Christ, amen.
1317
01:16:47,667 --> 01:16:49,700
- We're here today
to remember Brett Paul.
1318
01:16:49,700 --> 01:16:51,767
- Doris Grade.
- Robert Baird.
1319
01:16:51,767 --> 01:16:53,333
- Geri Teitelbaum Fosseen.
1320
01:16:55,800 --> 01:17:00,600
- I think it really points out
how dangerous this illness is.
1321
01:17:00,600 --> 01:17:02,533
We're the heartland
of the nation,
1322
01:17:02,533 --> 01:17:05,600
and our people are dying here
from Lyme disease.
1323
01:17:09,567 --> 01:17:13,767
- My son was 31 years old,
and he died from Lyme disease
1324
01:17:13,767 --> 01:17:15,500
because no one would treat him.
1325
01:17:17,600 --> 01:17:19,433
- I keep wondering
what else I could have done.
1326
01:17:19,433 --> 01:17:20,767
Should I have taken her
to Europe?
1327
01:17:20,767 --> 01:17:22,100
Should I have
taken her somewhere
1328
01:17:22,100 --> 01:17:24,567
where somebody
would have done something?
1329
01:17:24,567 --> 01:17:26,667
But we don't seem to care
in this country.
1330
01:17:26,667 --> 01:17:28,933
They just didn't try to help.
1331
01:17:28,933 --> 01:17:32,500
When we tried
to get medication for her,
1332
01:17:32,500 --> 01:17:35,367
it was almost impossible,
because the medical profession
1333
01:17:35,367 --> 01:17:37,500
is afraid to give medication
for this.
1334
01:17:40,300 --> 01:17:42,733
- If I was asked whether
Lyme disease could be fatal,
1335
01:17:42,733 --> 01:17:45,200
I would say
not in my experience
1336
01:17:45,200 --> 01:17:48,167
and not suggested by any
of the existing literature.
1337
01:17:51,667 --> 01:17:55,900
- My husband died
two months ago of Lyme disease.
1338
01:17:55,900 --> 01:18:01,267
It's specifically
on his death certificate.
1339
01:18:01,267 --> 01:18:05,333
- By the time they
figure it out, it's too late.
1340
01:18:07,433 --> 01:18:11,567
- The last words
my daughter spoke to me,
1341
01:18:11,567 --> 01:18:13,733
her last words to us,
"Mommy, they're gonna kill me,"
1342
01:18:13,733 --> 01:18:14,833
and they did.
1343
01:18:19,933 --> 01:18:22,633
- I am one of the many
that will speak for her now.
1344
01:18:24,467 --> 01:18:25,833
She shouldn't have had to die.
1345
01:18:27,767 --> 01:18:31,600
I'm angry at the fact that
there's nobody there to help me.
1346
01:18:31,600 --> 01:18:34,667
I'm angry at the fact that
this disease is being ignored.
1347
01:18:34,667 --> 01:18:36,467
I'm angry at the fact
1348
01:18:36,467 --> 01:18:38,233
that there's a Hippocratic oath
out there
1349
01:18:38,233 --> 01:18:40,233
that these doctors
are supposed to heal me,
1350
01:18:40,233 --> 01:18:42,533
and they ignored me,
1351
01:18:42,533 --> 01:18:46,300
and they put a price on my life,
which was nothing.
1352
01:18:46,300 --> 01:18:50,267
Nobody was there to help me,
and instead,
1353
01:18:50,267 --> 01:18:53,633
they blamed it on me by saying
it was all in my head.
1354
01:19:07,367 --> 01:19:11,067
- We were having dinner,
just, you know, watching TV,
1355
01:19:11,067 --> 01:19:13,800
and she started
having a reaction.
1356
01:19:29,333 --> 01:19:33,200
It was a mild seizure at first,
and it progressively got worse.
1357
01:19:38,867 --> 01:19:41,067
She was
having problems breathing,
1358
01:19:41,067 --> 01:19:45,067
and then stopped breathing
all together.
1359
01:20:29,700 --> 01:20:31,933
The first doctor
that we met with,
1360
01:20:31,933 --> 01:20:35,367
first statement was,
"Lyme doesn't do this.
1361
01:20:35,367 --> 01:20:36,367
That's not what you have."
1362
01:20:41,967 --> 01:20:45,267
Three of the doctors all asked
if she's seeing a psychiatrist
1363
01:20:45,267 --> 01:20:47,200
because they all just assumed
it was in her head.
1364
01:20:50,367 --> 01:20:53,333
- My body had been
losing ability for a long time,
1365
01:20:53,333 --> 01:20:57,667
cognitive function,
physical ability to do things,
1366
01:20:57,667 --> 01:21:02,067
and I'd been keeping it down,
you know, working around it,
1367
01:21:02,067 --> 01:21:04,400
adjusting my life,
so you know what?
1368
01:21:04,400 --> 01:21:07,300
I don't want to hear it,
and I'm sorry,
1369
01:21:07,300 --> 01:21:09,800
but I have been dealing with it,
1370
01:21:09,800 --> 01:21:12,067
and now we have been
dealing with it.
1371
01:21:12,067 --> 01:21:13,833
That's ten years.
1372
01:21:13,833 --> 01:21:16,567
That's a long time
to be patient.
1373
01:21:19,100 --> 01:21:22,367
- I mean, it's frustrating
to hear doctor after doctor
1374
01:21:22,367 --> 01:21:25,333
after doctor say either,
A, "Lyme doesn't exist,"
1375
01:21:25,333 --> 01:21:28,933
or, "Lyme doesn't do this,"
or, you know,
1376
01:21:28,933 --> 01:21:31,400
"Well, what you're experiencing
isn't Lyme."
1377
01:21:31,400 --> 01:21:33,867
It's almost like they've been
trained or programmed
1378
01:21:33,867 --> 01:21:35,567
that this is what they're
supposed to say.
1379
01:21:46,833 --> 01:21:48,667
- It's really madness,
you know?
1380
01:21:48,667 --> 01:21:50,900
There's something wrong.
1381
01:21:50,900 --> 01:21:52,333
I don't hear it
in any other disease,
1382
01:21:52,333 --> 01:21:54,733
never heard it in my life.
1383
01:21:54,733 --> 01:21:55,967
So there's something funny.
1384
01:21:55,967 --> 01:21:57,867
I don't know what
that something funny is.
1385
01:22:02,200 --> 01:22:04,633
- Attorney General Blumenthal
of Connecticut
1386
01:22:04,633 --> 01:22:09,067
has taken the historic move
of starting an investigation
1387
01:22:09,067 --> 01:22:10,967
into the panel members who wrote
1388
01:22:10,967 --> 01:22:13,400
the Infectious Diseases
Society of America
1389
01:22:13,400 --> 01:22:16,267
Lyme Treatment Guidelines.
1390
01:22:16,267 --> 01:22:19,267
He believes
that they have conflicts
1391
01:22:19,267 --> 01:22:22,233
that may be corrupting
their advice.
1392
01:22:22,233 --> 01:22:25,067
- Our investigation concerns
whether the antitrust laws
1393
01:22:25,067 --> 01:22:28,233
have been violated,
purposefully or not,
1394
01:22:28,233 --> 01:22:30,667
by these guidelines.
1395
01:22:30,667 --> 01:22:32,867
They may restrict
consumer choice
1396
01:22:32,867 --> 01:22:37,333
with tremendous implications,
not only for patient care,
1397
01:22:37,333 --> 01:22:40,733
but also the economics
of insurance coverage.
1398
01:22:45,900 --> 01:22:47,600
- Ideally, authors
of medical guidelines
1399
01:22:47,600 --> 01:22:49,167
should have
no financial conflicts
1400
01:22:49,167 --> 01:22:50,767
when they make
their recommendations,
1401
01:22:50,767 --> 01:22:54,367
but if you look at the current
IDSA guidelines' authors,
1402
01:22:54,367 --> 01:22:57,067
6 of 14 of them
or their universities
1403
01:22:57,067 --> 01:22:59,267
hold patents associated
with Lyme disease
1404
01:22:59,267 --> 01:23:02,067
or its co-infections.
1405
01:23:02,067 --> 01:23:03,967
4 of the 14
have received funding
1406
01:23:03,967 --> 01:23:08,600
from Lyme or co-infection
test kit manufacturers.
1407
01:23:08,600 --> 01:23:10,567
4 have been paid
by insurance companies
1408
01:23:10,567 --> 01:23:12,400
to write Lyme policy guidelines
1409
01:23:12,400 --> 01:23:15,767
or serve as consultants
in legal cases,
1410
01:23:15,767 --> 01:23:18,200
and 9 of the 14 authors
or their universities
1411
01:23:18,200 --> 01:23:19,333
have received money
1412
01:23:19,333 --> 01:23:21,867
from Lyme disease
vaccine manufacturers.
1413
01:23:24,067 --> 01:23:26,400
- The fact
that 9 out of 14 authors
1414
01:23:26,400 --> 01:23:28,267
have a direct
conflict of interest
1415
01:23:28,267 --> 01:23:31,900
with somebody who's involved
in manufacturing products
1416
01:23:31,900 --> 01:23:35,467
for any aspect of the disease
is completely outrageous.
1417
01:23:35,467 --> 01:23:39,367
The Infectious Disease
Society of America
1418
01:23:39,367 --> 01:23:43,333
should establish
a hard-and-fast rule
1419
01:23:43,333 --> 01:23:46,667
that the people who serve
on guideline-writing committees
1420
01:23:46,667 --> 01:23:50,967
not have any ties
to any manufacturer
1421
01:23:50,967 --> 01:23:53,600
that has a stake in the outcome
of those guidelines,
1422
01:23:53,600 --> 01:23:55,367
period, end of story.
1423
01:23:55,367 --> 01:23:57,700
- There are a lot of people
in the academic community,
1424
01:23:57,700 --> 01:23:59,533
I think, that know
these people are wrong,
1425
01:23:59,533 --> 01:24:02,467
but no one will speak up,
so, you know, at what point
1426
01:24:02,467 --> 01:24:05,567
will people say
the emperor has no clothes?
1427
01:24:05,567 --> 01:24:08,067
You know, when will
the voice of the people
1428
01:24:08,067 --> 01:24:12,567
finally reach a level where
the truth will come out?
1429
01:24:12,567 --> 01:24:14,567
I mean, I think the truth
will eventually come out,
1430
01:24:14,567 --> 01:24:16,767
but how many more people
are gonna suffer
1431
01:24:16,767 --> 01:24:18,067
before the truth comes out?
1432
01:24:22,067 --> 01:24:26,500
- As citizens, we ought
to be astonished and alarmed.
1433
01:24:26,500 --> 01:24:27,967
- Every year,
1434
01:24:27,967 --> 01:24:32,100
there's thousands and thousands
of people suffering.
1435
01:24:34,967 --> 01:24:37,467
- This is a total disgrace.
1436
01:24:37,467 --> 01:24:43,233
Write to the IDSA.
Chronic Lyme disease exists.
1437
01:24:59,900 --> 01:25:01,600
- Good afternoon, everybody.
1438
01:25:01,600 --> 01:25:05,333
Continuing hearings on the case
of Dr. Charles Jones.
1439
01:25:10,067 --> 01:25:11,067
- He had their records,
1440
01:25:11,067 --> 01:25:12,367
which did not confirm
the history
1441
01:25:12,367 --> 01:25:13,800
that the mother had given.
1442
01:25:13,800 --> 01:25:15,533
He'd been told
that Nevada providers
1443
01:25:15,533 --> 01:25:17,700
saw no reason
to prescribe an antibiotic.
1444
01:25:17,700 --> 01:25:20,300
Nonetheless,
he prescribed for both children.
1445
01:25:20,300 --> 01:25:22,133
- I hate
to sound conspiratorial,
1446
01:25:22,133 --> 01:25:24,067
but I think
I have a right to be.
1447
01:25:24,067 --> 01:25:27,567
I think that it would be
advantageous for me
1448
01:25:27,567 --> 01:25:30,200
as a Lyme-literate physician
1449
01:25:30,200 --> 01:25:32,167
and as the only pediatrician
in the world
1450
01:25:32,167 --> 01:25:35,267
who treats Lyme patients
to be out of the picture.
1451
01:25:35,267 --> 01:25:40,067
- There's no charge
that these patients were harmed.
1452
01:25:40,067 --> 01:25:44,600
In fact--how do we get past this
big elephant in the living room
1453
01:25:44,600 --> 01:25:48,700
that these patients
were treated successfully
1454
01:25:48,700 --> 01:25:50,633
and are now doing very well?
1455
01:25:54,633 --> 01:25:57,533
- I'm 78 years old.
1456
01:25:57,533 --> 01:25:59,433
In the worst scenario,
I lose my license.
1457
01:25:59,433 --> 01:26:01,067
I don't think they're going
to let it go.
1458
01:26:01,067 --> 01:26:02,067
I know that.
1459
01:26:09,133 --> 01:26:12,267
- Bye, Dr. Jones.
1460
01:26:12,267 --> 01:26:15,800
All I can do to help.
1461
01:26:15,800 --> 01:26:16,833
- Thank you.
1462
01:26:23,300 --> 01:26:25,867
- We all love Dr. Jones.
He's like a father to me.
1463
01:26:30,067 --> 01:26:33,467
If they succeed
in taking his license away,
1464
01:26:33,467 --> 01:26:37,333
I just don't feel
that he's gonna feel
1465
01:26:37,333 --> 01:26:39,100
like he needs
to be here anymore,
1466
01:26:39,100 --> 01:26:44,733
and that's very sad to me.
1467
01:26:53,367 --> 01:26:55,067
- I don't know
where my daughter would be
1468
01:26:55,067 --> 01:26:56,367
without Dr. Jones.
1469
01:26:58,333 --> 01:26:59,733
- We call him the Lyme pope.
1470
01:27:57,133 --> 01:27:59,067
- I was probably
the 30th individual
1471
01:27:59,067 --> 01:28:00,733
who had been called
before a medical board
1472
01:28:00,733 --> 01:28:03,300
for treating
persistent Lyme disease.
1473
01:28:03,300 --> 01:28:06,500
They decided
to suspend my license with stay,
1474
01:28:06,500 --> 01:28:08,200
which means
that I was allowed to practice,
1475
01:28:08,200 --> 01:28:10,133
but the damage was done.
1476
01:28:10,133 --> 01:28:11,267
Within a few weeks,
1477
01:28:11,267 --> 01:28:12,867
Blue Cross Blue Shield
of North Carolina
1478
01:28:12,867 --> 01:28:14,500
cancelled our contract,
1479
01:28:14,500 --> 01:28:16,967
and then they sued me
for $100 million.
1480
01:28:19,467 --> 01:28:22,867
Financially, I've lost
essentially everything.
1481
01:28:22,867 --> 01:28:24,300
I've lost my clinic.
1482
01:28:24,300 --> 01:28:26,133
I've sold the building,
and in a couple months,
1483
01:28:26,133 --> 01:28:27,233
I'll be closing the practice.
1484
01:28:39,300 --> 01:28:41,100
- They had the vision loss,
1485
01:28:41,100 --> 01:28:43,167
and they were starting
to lose their hearing there.
1486
01:28:43,167 --> 01:28:45,500
- They were really young
when they were losing it.
1487
01:28:45,500 --> 01:28:47,800
- Christy, my oldest child,
1488
01:28:47,800 --> 01:28:51,267
died 6 1/2 years ago
from Lyme's disease.
1489
01:28:51,267 --> 01:28:52,767
She was 19 years old.
1490
01:28:52,767 --> 01:28:55,833
Courtney is 25 years old.
1491
01:28:55,833 --> 01:28:57,800
Can you say "doctor"?
1492
01:28:57,800 --> 01:28:59,267
Say "doctor."
1493
01:28:59,267 --> 01:29:01,067
- Doctor.
1494
01:29:06,133 --> 01:29:09,467
- I'm glad somebody stepped in
and helped you,
1495
01:29:09,467 --> 01:29:12,333
that you found the right people.
1496
01:29:12,333 --> 01:29:13,267
- Yeah.
1497
01:29:19,067 --> 01:29:21,067
- Hi, there, sweetie.
How you doing?
1498
01:29:23,300 --> 01:29:24,700
- You made
significant progress.
1499
01:29:24,700 --> 01:29:25,800
I'm delighted with the fact
1500
01:29:25,800 --> 01:29:27,433
that your multiple
neurologic symptoms
1501
01:29:27,433 --> 01:29:28,767
are so much better
1502
01:29:28,767 --> 01:29:30,700
and that you're--
you have control of your body.
1503
01:29:30,700 --> 01:29:32,167
You can live in your own skin.
1504
01:29:32,167 --> 01:29:34,133
From someone who came
unable to swallow
1505
01:29:34,133 --> 01:29:36,067
and in, you know, an altered--
1506
01:29:36,067 --> 01:29:37,167
- Bedridden.
1507
01:29:37,167 --> 01:29:39,067
- Bedridden,
altered sense of smell,
1508
01:29:39,067 --> 01:29:41,167
and uncontrolled tremors
and seizures
1509
01:29:41,167 --> 01:29:43,867
and couldn't stand up and--gosh.
1510
01:29:43,867 --> 01:29:45,700
- I'm looking good.
- You're looking good.
1511
01:29:51,200 --> 01:29:53,067
- Well, my greatest fear
is that, you know,
1512
01:29:53,067 --> 01:29:55,667
like some of the couples
out there who have Lyme,
1513
01:29:55,667 --> 01:29:57,800
that both of us
will be impacted by it,
1514
01:29:57,800 --> 01:30:02,300
and that he would have
gotten it from me.
1515
01:30:02,300 --> 01:30:05,700
You know, he's complained about
a lot of aches and pains.
1516
01:30:05,700 --> 01:30:07,167
- I'm not old,
but I'm getting older,
1517
01:30:07,167 --> 01:30:09,867
and there's, like--
there's things that I'm feeling
1518
01:30:09,867 --> 01:30:12,000
that probably happen
to everybody.
1519
01:30:12,000 --> 01:30:15,500
Like, one of my eyes right now--
I got to go to a vision guy,
1520
01:30:15,500 --> 01:30:16,933
'cause one of my eyes
is blurred out,
1521
01:30:16,933 --> 01:30:18,467
and I've always had
20/10 vision.
1522
01:30:18,467 --> 01:30:19,800
I mean, all of a sudden,
this eye--
1523
01:30:19,800 --> 01:30:20,967
and it wasn't--
it was, like,
1524
01:30:20,967 --> 01:30:22,767
an overnight thing,
that suddenly,
1525
01:30:22,767 --> 01:30:24,900
I'm having issues
with blurry vision
1526
01:30:24,900 --> 01:30:26,767
with my eyes,
getting headaches,
1527
01:30:26,767 --> 01:30:29,167
which I account
towards the blurry vision,
1528
01:30:29,167 --> 01:30:30,167
but bottom line--
1529
01:30:30,167 --> 01:30:32,867
- Mono-like symptoms.
1530
01:30:32,867 --> 01:30:36,067
He goes horizontal, he's out.
1531
01:30:36,067 --> 01:30:38,400
- Just feeling lethargic.
1532
01:30:38,400 --> 01:30:39,600
I won't tell you
that it's not
1533
01:30:39,600 --> 01:30:41,167
in the back of my mind
that it is possible.
1534
01:30:44,800 --> 01:30:46,400
- Lyme is a distant cousin
to syphilis,
1535
01:30:46,400 --> 01:30:50,733
which is obviously
sexually transmitted.
1536
01:30:50,733 --> 01:30:52,167
Now, if Lyme were found
to indeed be
1537
01:30:52,167 --> 01:30:53,500
a sexually transmitted disease,
1538
01:30:53,500 --> 01:30:57,767
that would change the landscape
of the whole argument.
1539
01:30:57,767 --> 01:30:59,733
- The only way the Lyme disease
is transmitted
1540
01:30:59,733 --> 01:31:04,467
is through the bite
of an Ixodes tick.
1541
01:31:04,467 --> 01:31:05,900
We know about Lyme disease.
1542
01:31:05,900 --> 01:31:09,933
It's something
that we have a good handle on.
1543
01:31:09,933 --> 01:31:11,500
That's really the bottom line.
1544
01:31:20,167 --> 01:31:21,767
Jared is a very happy baby
1545
01:31:21,767 --> 01:31:25,067
that just wakes up happy,
laughs all day, giggles.
1546
01:31:25,067 --> 01:31:26,967
He just loves life.
1547
01:31:30,867 --> 01:31:35,167
Jared's test came back positive
for the Lyme antibody,
1548
01:31:35,167 --> 01:31:37,767
which means he may be infected.
1549
01:31:40,367 --> 01:31:43,433
He may end up getting very sick
someday because of it,
1550
01:31:43,433 --> 01:31:45,067
but we're very lucky right now.
1551
01:31:45,067 --> 01:31:46,300
He's doing well.
1552
01:31:54,600 --> 01:31:56,267
I don't want to say that.
1553
01:31:56,267 --> 01:31:58,067
I don't want to say
he has Lyme disease.
1554
01:32:02,533 --> 01:32:06,800
I don't like to use that term
right now...
1555
01:32:06,800 --> 01:32:07,733
not yet.
1556
01:32:13,400 --> 01:32:19,733
- The controversy in Lyme
disease is a shameful affair,
1557
01:32:19,733 --> 01:32:25,267
because the whole thing
is politically tainted.
1558
01:32:25,267 --> 01:32:30,200
Money goes to people that have,
in the past 30 years,
1559
01:32:30,200 --> 01:32:34,933
produced the same thing:
nothing.
1560
01:32:40,767 --> 01:32:42,700
- Lyme disease
is a significant disease
1561
01:32:42,700 --> 01:32:45,733
we don't have a cure for.
1562
01:32:45,733 --> 01:32:48,567
And that we don't have
accurate testing,
1563
01:32:48,567 --> 01:32:50,500
that should scare people,
1564
01:32:50,500 --> 01:32:52,600
'cause how do you know
if you have it?
1565
01:32:52,600 --> 01:32:54,600
How do you know how to fix it?
1566
01:32:54,600 --> 01:32:56,500
How do you know what to do?
1567
01:32:56,500 --> 01:33:01,067
And by the time you're
so disabled by the disease,
1568
01:33:01,067 --> 01:33:04,067
you're in a panicked state.
1569
01:33:04,067 --> 01:33:06,567
You want help.
It doesn't matter.
1570
01:33:06,567 --> 01:33:10,833
You'll pay anything
to get your health back,
1571
01:33:10,833 --> 01:33:13,733
and the fact that doctors
who are willing to help you
1572
01:33:13,733 --> 01:33:17,833
and are legitimate doctors
willing to put their license,
1573
01:33:17,833 --> 01:33:21,567
their life, on the line
to help you,
1574
01:33:21,567 --> 01:33:26,300
and that it even has
to come to that, is scary.
1575
01:33:28,300 --> 01:33:31,500
- Dr. Burrascano,
good luck in whatever you do.
1576
01:33:31,500 --> 01:33:33,267
You're a wonderful doctor.
1577
01:33:33,267 --> 01:33:36,200
- Well, recently,
I decided to close my practice.
1578
01:33:36,200 --> 01:33:39,233
The political climate
for physicians treating Lyme
1579
01:33:39,233 --> 01:33:42,367
is very difficult nowadays.
1580
01:33:42,367 --> 01:33:44,900
- This is a doctor
who was hauled before
1581
01:33:44,900 --> 01:33:47,700
the New York's
medical review board,
1582
01:33:47,700 --> 01:33:50,133
I think on two occasions,
1583
01:33:50,133 --> 01:33:54,100
and threatened
with removal of his license.
1584
01:33:54,100 --> 01:33:55,433
- You know,
I look at these charts
1585
01:33:55,433 --> 01:33:57,367
and I think of the people
who've gone blind.
1586
01:33:57,367 --> 01:33:59,567
They've lost their hearing.
They are in wheelchairs.
1587
01:33:59,567 --> 01:34:00,667
I mean, it's terrible,
1588
01:34:00,667 --> 01:34:03,300
and especially because
so many of them,
1589
01:34:03,300 --> 01:34:05,967
it could have been prevented
if they were properly treated
1590
01:34:05,967 --> 01:34:07,067
in the beginning.
1591
01:34:07,067 --> 01:34:08,200
That's what kills me.
1592
01:34:08,200 --> 01:34:10,100
Man, such a waste.
1593
01:34:10,100 --> 01:34:11,100
Look at all this.
1594
01:34:11,100 --> 01:34:13,100
Such a waste of people's lives,
1595
01:34:13,100 --> 01:34:18,100
of money, resources, time,
and all it takes is knowledge.
1596
01:34:18,100 --> 01:34:20,967
I bet you that if these people,
all of them,
1597
01:34:20,967 --> 01:34:22,533
had seen a Lyme-literate doctor
1598
01:34:22,533 --> 01:34:24,100
in the very beginning
of their illness,
1599
01:34:24,100 --> 01:34:26,500
I'm sure more than 1/2,
if not more than 3/4 of them,
1600
01:34:26,500 --> 01:34:28,467
would never have gotten
to that stage ever.
1601
01:34:35,967 --> 01:34:38,267
- Lyme can go
in so many directions.
1602
01:34:38,267 --> 01:34:40,333
There's the people
that are hit really hard
1603
01:34:40,333 --> 01:34:43,067
that are actually crippled
and handicapped.
1604
01:34:43,067 --> 01:34:44,867
They're very visibly ill.
1605
01:34:44,867 --> 01:34:47,367
And then there's people
like myself
1606
01:34:47,367 --> 01:34:51,200
that, you know,
are invisibly ill,
1607
01:34:51,200 --> 01:34:54,467
like the walking dead.
1608
01:34:54,467 --> 01:34:58,133
Now there is a possibility
of getting my body back.
1609
01:35:01,833 --> 01:35:07,067
I'm feeling the best I've felt,
probably, in years.
1610
01:35:08,667 --> 01:35:10,933
I feel like my brain is back.
1611
01:35:10,933 --> 01:35:13,100
I have more energy.
1612
01:35:13,100 --> 01:35:16,667
You know, I feel much clearer.
1613
01:35:16,667 --> 01:35:21,100
This is the first bit
of hope I've had...
1614
01:35:21,100 --> 01:35:25,267
real hope, in--
for this whole time.
1615
01:35:25,267 --> 01:35:27,667
It's almost like
I started building a bridge
1616
01:35:27,667 --> 01:35:29,067
to the other side,
1617
01:35:29,067 --> 01:35:33,067
and I kind of was going
that way.
1618
01:35:33,067 --> 01:35:35,067
Now I'm looking back like,
1619
01:35:35,067 --> 01:35:39,500
"Oh, I'm gonna go walk back
into my body and start again."
1620
01:35:39,500 --> 01:35:42,800
It's daunting.
1621
01:35:48,900 --> 01:35:52,900
I met a lovely gentleman
who's been really supportive,
1622
01:35:52,900 --> 01:35:58,067
and...I don't know.
1623
01:35:58,067 --> 01:35:59,467
For the first time, it just--
1624
01:35:59,467 --> 01:36:02,433
it feels so good
to have someone's support.
1625
01:36:09,500 --> 01:36:12,433
I don't have
to go it alone anymore.
1626
01:36:28,300 --> 01:36:29,900
- I can't tell you
how excited I am.
1627
01:36:29,900 --> 01:36:33,867
This is just a marvelous,
marvelous new concept.
1628
01:36:36,600 --> 01:36:38,967
Up until this point,
we had a hunch
1629
01:36:38,967 --> 01:36:42,433
that the bug had to be
hiding somewhere in the body
1630
01:36:42,433 --> 01:36:45,067
in a form
which we couldn't really
1631
01:36:45,067 --> 01:36:46,300
put our fingers on
1632
01:36:46,300 --> 01:36:48,300
and we couldn't really find
with a microscope.
1633
01:36:53,333 --> 01:36:55,900
One night, as I was looking
at a culture of Borrelia,
1634
01:36:55,967 --> 01:36:58,367
I saw a large colony
of organisms
1635
01:36:58,433 --> 01:37:01,600
protected by
a gel-like substance,
1636
01:37:01,667 --> 01:37:03,933
and as I was reviewing
the pictures,
1637
01:37:04,067 --> 01:37:06,300
it became clear
that this was very reminiscent
1638
01:37:06,367 --> 01:37:07,767
of what they call a biofilm.
1639
01:37:07,833 --> 01:37:13,200
The idea of a Borrelia biofilm
is very, very powerful,
1640
01:37:13,267 --> 01:37:15,667
because biofilm explains
in that one word
1641
01:37:15,733 --> 01:37:19,167
why some cases
of Lyme disease are chronic,
1642
01:37:19,233 --> 01:37:20,500
why they're hard to treat,
1643
01:37:20,567 --> 01:37:22,167
and why,
after antibiotic treatment,
1644
01:37:22,233 --> 01:37:24,633
they may relapse,
1645
01:37:24,700 --> 01:37:26,067
because biofilms are,
by definition,
1646
01:37:26,100 --> 01:37:30,567
chronic, difficult to treat,
and capable of relapse.
1647
01:37:36,300 --> 01:37:37,933
It's absolutely revolutionary.
1648
01:37:40,067 --> 01:37:42,667
The major medical journals
have published
1649
01:37:42,667 --> 01:37:45,500
that chronic Lyme disease
is not real
1650
01:37:45,500 --> 01:37:47,667
and it's
a psychosomatic condition.
1651
01:37:47,667 --> 01:37:52,733
The biofilm model dismantles
that entire argument.
1652
01:37:59,567 --> 01:38:02,800
The patients were right
all along.
1653
01:38:02,800 --> 01:38:07,533
It's a great opportunity to say,
"Aha, they were right,"
1654
01:38:07,533 --> 01:38:08,800
and they were right.
1655
01:38:11,633 --> 01:38:12,567
They were right.
1656
01:38:17,067 --> 01:38:18,100
- Wait up.
1657
01:38:25,433 --> 01:38:29,167
- This disease
nearly destroyed my life.
1658
01:38:29,167 --> 01:38:32,067
It got really bad.
It got really bad.
1659
01:38:34,933 --> 01:38:37,267
I'm happy
to have my family still.
1660
01:38:37,267 --> 01:38:40,900
I'm thankful to them
for staying with me.
1661
01:38:40,900 --> 01:38:42,900
I'm back.
1662
01:38:42,900 --> 01:38:44,300
I'm glad to be here.
1663
01:38:49,900 --> 01:38:52,300
If I'd stopped treatment
after even the first year,
1664
01:38:52,300 --> 01:38:53,900
I never would have made it
1665
01:38:53,900 --> 01:38:56,233
anywhere close
to where I am now.
1666
01:38:59,067 --> 01:39:01,433
Mind you, I had to fight
for what I got.
1667
01:39:01,433 --> 01:39:02,767
In the current system,
1668
01:39:02,767 --> 01:39:04,700
I'd get maybe
a month of treatment, that's it.
1669
01:39:04,700 --> 01:39:06,600
Everything you have
is what you're going to have
1670
01:39:06,600 --> 01:39:07,967
for the rest of your life,
1671
01:39:07,967 --> 01:39:10,167
and yet all the improvement
that I've experienced
1672
01:39:10,167 --> 01:39:12,533
happens after the third year
of treatment.
1673
01:39:17,867 --> 01:39:21,433
And then there's the phase where
I start to get my life back,
1674
01:39:21,433 --> 01:39:23,700
and that's the phase I'm in now,
1675
01:39:23,700 --> 01:39:26,067
and it's like magic.
1676
01:39:30,067 --> 01:39:31,400
I'm so glad to be here.
1677
01:39:33,767 --> 01:39:35,267
I can't even say.
125796
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