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These are the user uploaded subtitles that are being translated: Eߣ�B��B��B�B�B��matroskaB��B��S�g �M�t�M��S��I�fS��M��S��T�kS���M��S��S�kS���M��S��T�gS��~�O�I�f@�*ױ�B@M��libebml v1.4.2 + libmatroska v1.6.4WA�mkvmerge v68.0.0 ('The Curtain') 64-bitD��AVc�@Da� ��X}e{��The Quiet Epidemics����1xk 1����d���T�k���ׁsň<��= &`<������S_TEXT/UTF8"���en-US�D(C�u��C �����[ambient nature sounds]�� �C�u�炀b�����[serene music]�� ������ �♪ ♪��_C�u���������[bird squawking]�� �C�u��������[bird squawking]�� �C�u��Zݠ����[birds squawking]�� �C�u��p5�����- [blowing softly]�� 8C�u���������[blows]�� �C�u���������There's a bunch of 'em on this bird.��������%Several of 'em right here on the top of the head.�� DC�u��Ǝ�����There's another one just loose.���������And just dropped.���C�u���4�����[chuckles]���������We may not see that one again.�� �����,This is really quite unusual.���C�u@��������Two of 'em just fell off here.��e������They're all apparently completely engorged,�������� 8and ready just to fall off.��xC�u��������[music builds]�� �C�u������- Here's one. Here's one.��Ӡ�����Here.���C�u���������Here. Here.��6������So that's 81 larvae in one 30-meter drag.��uC�u���Ơ����- We have this project��<�����fwhere we're testing ticks�������� from all over the country.���C�u�����ġ��These are ticks that are coming into contact with people.�� ������ 2- Texas, New York,��[C�u���������Virginia, Florida, Pennsylvania, Missouri,�� ����� 2Oklahoma, Wyoming, California,�� �C�u��������Georgia, Ohio, Indiana, Nevada,�� 䠢��� Alabama, North Carolina.�� �C�u@��3�����- Ticks are not just in the Northeast,�� ����� Iwhere we classically think they are.��������iThey're in the South. They're in the far West.��OC�u��M栻���And that means that these things are everywhere.��Ҡ�����[suspenseful music]�� �C�u��a������♪ ♪�� ꠠ��� - There is an epidemic���������disease spreading across���C�u��wH�����the United States.��U�����~It's called Lyme disease.��P������It's serious and can be fatal.���C�u@���M�����- As it digs in for a meal of blood,��P�����yit can inject the germ it carries��ؠ����{right into your bloodstream.���C�u@���������Shaped like a corkscrew and called a spirochete,�� ������ �first cousin of the spirochete that causes syphilis,�� �C�u��Ă�����and equally elusive.��������V- The disease causes symptoms that look like dementia,�� C�u��������Alzheimer's disease,���������multiple sclerosis, ALS.�� �C�u@���J�á��- Meanwhile, debate is growing over the proper treatment���������for Lyme disease.���������all: Lyme is spreading!���C�u��Ѡ����- Most cases respond��ݠ����to treatment with antibiotics,��[����� �but others do not.���C�u@�^�����Whether they suffer from a chronic form of the disease�� D����� mis a hotly contested debate among doctors,�� JC�u��.>�����patients, and insurance companies.������� �- There is a public perception that Lyme disease�� >C�u@��G,�����can routinely present in a myriad of ways.�� b����� �That is incorrect.��6������- Right now, my hands are burning.��~C�u@��`������My feet are burning.��頠���Every joint in my body�������� �hurts all day.��1�����That's Lyme disease.��+C�u��y0�����- You brought a tick.�� h����� �- The Lyme disease, the ticks, they're everywhere.�� �C�u���������- Last year, there were cases reported in 24 states.�� >����� g- 37 states. - 43 states.�� C�u���L�����- 45 states.��Z������- And it may be as close as your backyard.��������P[suspenseful music]�� �C�u���W�����♪ ♪��_C�u��������[ambient noises]�� �C�u���Y�����- [sighs]��1�����!I get a really guilty feeling when I come down here.�� �C�u@���������Because, uh, you know,��%�����OI guess it's about starting something�������zthat I was never able to finish.���C�u���򠨡��And it kind of just reminds me�� I����� sof when life used to be normal.�� ������:[soft dramatic music]�� �C�u���砑���♪ ♪��`�ơ���It's really hard to make people understand what's at stake.�� �C�u��Q�����It's so much more than just suffering and disease.�� b����� �[kids vocalizing]�� �C�u��:4�����It's like an atomic bomb drops down on your life��u������and just turns everything upside down.���C�u��`+�����Tons of medications.���������These are pill organizers.��ؠ����Oxygen.���C�u���������Empty meds.��O�����yThose are all full.�� I������This is what life became.���C�u���s�����I--I would let it all burn�� m����� �just to see Julia walk.�� sC�u���������Let's see you go. Do it. Let's see you go.�� �������- As a kid, I was very eager.�� C�u��ϛ�����I was very active.���������I loved to dance.��ݠ����iAnd I used to love to ride my bike.�� C�u���M�����- Feeling good? - Fine.�� ������ �But those things about me started to change.�� C�u��������Even though I knew something was wrong,�������� I never imagined it would be this.���C�u@��?_�����Like a week before I started�������� to get seriously ill,�� 𠰡��:well, I started to notice it was hard���C�u@��Zk�����to get out of bed in the morning.��נ����And you know, everybody has those days������� 2where they can't imagine waking up.���C�u��pi�����But it was every day, and it took me, like,�� h����� �an hour to get out of bed.���C�u���������The second week that I was sick,�� n����� �I was just sitting in class,��Ҡ�����and my legs went numb.�� �C�u@��������- The school called me, and they said,��㠴��� "Something is seriously wrong with Julia.�������� �You need to get here right away."��%C�u��������When I got there,��頯���I found Julia in the nurse's office,�� �����Vand she was just lifeless��yC�u@��������across two chairs.��`�š���And I went to go nudge Julia, and I'm like, "Julia. Julia.�� n����� What's the matter? What happened?"���C�u@���젪���She's like, "Dad, I can't see."��0�����[And she said, "I can't feel my arms,��O������and I can't feel my legs."��zC�u���b�����So I took her straight to the hospital.��������@Julia was tested for everything several times,�� �C�u��c�����not just once, and everything comes back negative.��&�����PIt was a very confusing time.�� mC�u��2J�����I felt like Julia was dying.���������So I spent a lot of time researching all her symptoms.���C�u@��J�����Julia's doctor would come to me and say,���������"Did you find anything else that we could test for?"�� Ơ�����So I would give her a list,��C�u@��b�����and she would run tests for everything I gave her.�� b����� �Again, I put in the search with Julia's symptoms,���C�u��w������and Lyme disease comes up.�� D����� mAnd I said, "I have to read this."�� C�u@���c�����And then I started researching the area��������%that we vacationed in,��O������the area around our house.�� �C�u��� ����There's Lyme disease in these areas.�������� �The story is told very clearly���C�u@���m�����just looking at her medical records.�� 𠬡�� You know, Julia got bit by a tick���������when she was nine years old.���C�u��Պ�����She went undiagnosed for the next two years.���������I felt like somebody threw a bucket���C�u@���*�����of ice water over my head.��~������I called Josephine. I called the kids.�� ������cI--I tell them, "I know what she's got.���C�u�� A�����She's got Lyme."���¡��1And when the doctor came in, it was like night and day.��,C�u@�� Ƞ����She went from being this wonderful, supporting doctor,�� ����� 8willing to try anything,��a������to adamant, "No, impossible. This is not it."��WC�u�� ; �����[inquisitive music]�� ������ �♪ ♪��f�ġ��KI mean, it was almost like as if we were using profanity,��-C�u�� Y������like "Lyme disease" was a bad word.��������They saw nothing wrong in the laboratory test,�� �C�u�� u^�����and they figured she must be faking it.�� Ơ�����- I remember just hearing that and, like,�� �C�u@�� �:�����I--I couldn't believe it.��`������Like, I'm having real symptoms.�� ������?I was comatose. I was losing my hair.�� >C�u@�� �ᠥ���- Fever, flaccid paralysis.��������How could she be faking fever?�� J�����The color blue. She was blue in color.�� hC�u�� ҹ�ǡ��The doctor insisted that this had to be conversion syndrome.��VC�u�� �ݠ����I felt like we were being attacked.��O�ơ��yAnd I felt like I had to start recording what was going on.�� C�u�� ǘ�����- [sniffles]��a������She was only 11 years old.�� ������QYou know, and she had a--���C�u�� �ߠ����she had to put up an argument like that.��+����� �The first thing I think of is,���C�u�� 󖠪���how many people go through this�� 8����� band then just go home and suffer in silence?��~C�u�� +�����[birds singing]�� �C�u�� ~�á��- I came to the Lyme disease controversy as an outsider,���������as an investigative reporter���C�u�� �S�����who wanted to find out��f������what was going on.��a����� �I went into it intending��UC�u�� �������to look at the trend in Lyme disease cases.�� ������'Was government doing enough to control ticks?���C�u�� �{�����I also wanted to know why I could get a vaccine�� ����� 8for my dog but there was none���C�u�� ������for my children and grandchildren.��y������[tense music]�� �C�u�� �ݠ����♪ ♪�������The main question is whether Lyme disease is chronic.��C�u�� /�����Does it respond to the short courses�� ����� 8of antibiotics that are recommended?�� JC�u�� '�����By and large, a small group�� t����� �of researchers and government officials�� bC�u�� =.�����basically say short courses of antibiotics cure.���C�u�� \"�����There was another side, though.�� ������ �I found patients who had been�� �C�u�� q������to 10, 15, 20 doctors,�� ������ �and they still had lingering, serious symptoms,���C�u�� ������and were tired of being ignored.�� \C�u�� �堲���What I found after two or three stories����á���was that I had waded into one of the most controversial,���C�u�� �i�á��divisive, and vicious medical debates in medicine today.���C�u�� �젚���[sweeping music]�� ������ �♪ ♪���C�u�� Ƞ����- There is a medical detection story in the making.�� s����� �It deals with arthritis and the possibility�� mC�u�� ������that a type of arthritis may have been uncovered�� ������ �which is caused by an insect bite.�� C�u@�� 1=�����The outbreak of arthritis is centered���������in Lyme, Connecticut, a small town located��%������on the Connecticut River.���C�u@�� G<�����In the past three years, there have been 51��%�����Oreported cases of the mysterious arthritis.�� s������Several adults have been treated,��'C�u�� aw�����but most of the victims are children.�� ������ �- So in the early 1970s,���C�u�� u������Allen Steere is a newly minted rheumatologist�� ����� 2who has also studied epidemiology, namely,�� �C�u�� �������"How do we define and count diseases?"�� ڠ����He's the guy from Yale��UC�u�� ������who answers the call of a young mother�� b����� �who reports that two of her children���C�u�� �������have been diagnosed with juvenile arthritis,�� 2����� \as have a number of others.��+C�u�� ��š��- Let me ask you, Dr. Steere, how did you get on the trail�� ������ �of this particular form of arthritis?�� �C�u�� 豠����- Frank, a number of parents in this community�� =����� gwere concerned that so many children��yC�u�� �������seemed to have arthritis.���������This is where the medical detective story comes in.�� �C�u��B�����Actually, like a detective,�� ꠵��� you try to determine where the people were�� �C�u��'A�����when they got their illness, when it occurred,�� ����� 2where they were in relation to one another.��%C�u��Bv�����- In 1977, he publishes a paper�� ߠ���� on an epidemic of arthritis.�� �C�u��\4�����Dr. Steere found that 25%�� >�ǡ�� gof that original Lyme disease group had something of a rash,��C�u��uȠ����a bull's-eye rash.�� ������ �And he also links this illness�� C�u���Ǡ����to the bite of a tick.�������� But as time went on, his focus changed,��-C�u���+�����and Dr. Steere was recognized in the Lyme community�������@as someone who was not their ally.�� mC�u��������all: Lyme is spreading! Lyme is spreading!�� ߠ���� - All we want is long-term treatment.���C�u@���D�����- If a patient thinks that they have Lyme disease,�� ������ �are being treated with antibiotic therapy,���������and are not responding, the most common reason���C�u@��"�����is that they actually have another illness.��Ҡ�����[soft dramatic music]�� �����9- As Lyme disease evolved,�� sC�u@��"������doctors needed guidance.�� ����� ISo a group got together,��������called the Infectious Diseases Society of America,��C�u��C:�����and wrote the first guidelines to treat Lyme disease,���������where they staked their claim�� C�u��[-�����that this disease was not chronic.�� h����� �♪ ♪�� �C�u��q������- This is a fairly benign disease if treated early.�� ������ �- It has, on occasion, been life-disruptive,�� �C�u���%�����but I don't want to overemphasize that fact.�� ������- As hard as the IDSA tried�� bC�u���������to solidify treatment of Lyme disease���������in one way only,���C�u���H�����there were cracks that emerged over time.�� \����� �And these cracks, if you will,�� �C�u��Ӕ�����were, you know, a doctor here, a doctor there,��Ӡ�����who discovered��fC�u���!�����following the guidelines didn't always work.�� ������ �[tense music]�� �C�u���������- I decided to return to Westchester County�� ������ �around 1985.�� �C�u��������Unbeknownst to me, Westchester at that time�� ������ �was beginning to be a burgeoning epidemic.���C�u@��.������I knew virtually nothing��㠜��� about Lyme disease��f����� �when I went into practice.�� ������I knew the name. That's about it.�� sC�u��G�����What I was observing was, like, incredible.�� 2����� \People get sick. You treat them.��+C�u@��[Ƞ����They get better.��`������And then the same symptoms would start creeping back.�� ������iHow can a organism survive these antibiotics?�� �C�u@��| �����[phone ringing]��+�����U- These were really in the early days,��������when we were all looking for answers.�� C�u@���W�����I was having a lot of patients��㠟��� coming into my office�� ����� Cwith bull's-eye rashes,��7�ġ���and about 80% would get better with standard antibiotics,�� �C�u@��� �����but 20% would not.�� s����� �So I would look at the guidelines,��������Qbut unfortunately, those guidelines were not���C�u@���&�����specific enough to deal with the complexity��Ҡ�����of what I was seeing.��頽���- So when I first was learning about Lyme disease,���C�u@��������I was really interested in an article��������%that came out in 1989��a����� �written by a neurologist, Andrew Pachner.��OC�u@���*�ˡŁHis article was called "Lyme disease, the New 'Great Imitator.'"�� ������ �And in that article, he presented six cases�� C�u@��)�����that were fascinating.��`������There was one case of an individual��[����� who had aggression outbursts.����š���A young child, and when he was treated, the OCD went away.�� �C�u@��+�����Here we have an infectious illness��&�����Othat's causing psychiatric problems.�������zSo why was Lyme disease��C�u@��B(�����called "the new great imitator?"��`������Because the first great imitator was syphilis.�� m�����!Syphilis was caused by a spiral-shaped organism�� CC�u��\������called a treponeme,��a�¡���and Lyme disease is caused by a spiral-shaped organism.��WC�u��p������Syphilis caused a huge variety of manifestations.�� ������ �So it mimicked other diseases.�� �C�u@���������- Lyme disease may be the great masquerader��%�����Oof the 1980s and '90s�������zin that it can do almost anything.���C�u@���%�ġ��- The Lyme disease spirochete is shaped like a corkscrew,�� ������ �so it drills through your joint cartilage.��VC�u@��Ɲ�����It quickly leaves the bloodstream.�� Ơ���� �It goes to organs.��U�����nIt goes to the heart and the brain.�� DC�u@���Ӡ����- The Lyme disease bacteria, Borrelia burgdorferi,�� ����� Jis definitely one of the smartest bacteria��������"on the planet.���C�u��𠳡��This organism knows how to change forms.���������It knows how to hide.�� �C�u��������And the way it evades the immune system--��%�����OLyme is more difficult to find on the blood tests.�� �C�u@��/������- And many of us clinicians were observing that.�� =����� gPatients that we strongly believed had Lyme disease,�� �C�u@��H#�����their standard tests for Lyme disease were negative.�� ������ �And as a result, it is easy for people to honestly,�� 8C�u@��`@�����you know, confuse Lyme for other conditions.�� =�á�� g- The most common misdiagnoses that I see in my practice�� C�u@��u�ʡāare people who've been diagnosed with chronic fatigue syndrome,�� g����� �fibromyalgia, rheumatoid arthritis, lupus,�� �C�u@���[�����multiple sclerosis is a big one,�������+patients who have dementia, Alzheimer's.��������KLyme can imitate all of these different diseases.�� �C�u���g�����So it's a very, very complex organism,�� ������ �and you really have to understand the biology��xC�u��������to understand how to treat these patients effectively.�� s������- We're now up to almost 500,000 cases�� 8C�u���<�����of Lyme disease in America every year.�� �������There are more cases of Lyme disease��OC�u��󈠯���than HIV and breast cancer combined.�� ������!Of those 500,000,�� �C�u�� ������about 10% to 20% will stay sick��Π�����for some period of time.�� �C�u@��'W�����We now believe that something on the order��͠�����of 2 million people��1�����Qsuffer the aftereffects of Lyme disease�� �C�u��C������in the United States.��㠪��� �So 50 years later, here we are,�� �C�u��[������and we still haven't answered many�� m����� �of the most urgent and basic questions.�� \C�u��w������"Chronic Lyme disease" is a rejected term��V������in American medicine.�� C�u���������The question is, why?�� ������ �[ambient nature sounds]�� �C�u���������- Home, sweet home away from home.�� ٠����And it is...���C�u��������time to do the ritual ironing.���C�u��#������I feel a little guilty staying in this place.�� g����� �Usually, like, an Embassy Suites person.�� hC�u��Fi�����I literally just came from Carlisle, Pennsylvania,�� ������ �which is, like, an incredibly endemic area.�� \C�u��^ڠ����And just to hear the stories there,�� ������ �with whole towns and neighborhoods being infected.�� >C�u��}{�����The mere fact that I validate their disease,��i������you know, and recognize it's not all in their head,�� �C�u@���Ԡ����that they're not just fabricating everything--�������1I think that's so important for people�� �������to have maybe somebody like me,���C�u���������who's in the medical profession, saying,�� 2����� \"I hear you." You know, "I get it."�� IC�u��� �á��- It is my honor to introduce tonight's keynote speaker,�� 9����� bDr. Neil Spector.��UC�u@��������Dr. Spector is one of the top���������breast cancer scientists in the country.�� 񠸡���The Lyme community is so incredibly fortunate�� �C�u@���������to have one of the smartest minds in research,�� I����� swho is working towards better treatment��1������and a cure for tick-borne illnesses.�� �C�u@�$'�����- Okay. Lyme disease.�� ������ �It's everywhere, right?��7�����&This isn't just a problem in Connecticut,��C�u��:������New York, New Jersey.��1�����ZIt's all over the place.��ؠ���� \And it's only getting worse.���C�u@��T`�����We've got people at the prime of their lives��̠�����who are taken out of society,��̠�����and yet we have no clue what's going on with them.��EC�u@��|�ơ��I'm coming up on ten years of a heart transplant recipient.��P�ơ��zThat was an evening that I'll never forget, Friday evening.�� �C�u@���o�����Surgeon walked into my room, and he said to me,�� ������ �"You'll be dead by Monday without a heart transplant."�� C�u���������[hopeful music]�� h����� �You can do all the right things in the world�� sC�u��ƿ�����and get bit by a tick,��U�����and it'll change your world forever.�� C�u���;�����[birds singing]�� �C�u���M�����I'd just moved here to North Carolina.���������It was 1998.�� �C�u�� �����Just started a new job.�������1Our daughter was a few weeks old.���C�u@��#Ǡ����I had always been unbelievably healthy.��̠�����I mean, I had ran marathons.���������I used to run ten miles a day, six days a week.�� �C�u��@J�����So it was a very foreign experience for me�� ������ �to go from taking care of cancer patients�� �C�u��W�����to barely being able to walk ten yards��V������without having to stop.���C�u@��q~�����We went through autoimmune diseases, lupus.�� ������ �All the tests were negative.�������I completely fell through the cracks��C�u@���Ġ����of the medical system.��y������And it wasn't until four years into my illness�� s�����@that I developed arthritis.��yC�u���������And so I started piecing it together and said,��O�����yyou know, "I'm convinced I have Lyme disease."�� C�u���������I got a call in my office,�� s����� �and the cardiologist said to me,�� =C�u���������"Is there a chair nearby?"��������QYou know, "You've got a severely damaged heart.�� �C�u���?�����You need to be evaluated for a heart transplant."�� D������I'm not sure how I drove home.��&C�u��������Just completely in tears,�� ������ �thinking, "This is it."��������Not gonna live beyond a certain age.�� �C�u��)�����Never gonna see my daughter grow older.��&�����OI'm not gonna see any of the milestones.�� �C�u��B\�����And then I just realized, you know,�� >����� hnot gonna just roll over and let that be the answer.�� C�u��_\�����I'm gonna do whatever it takes.��������"Few minutes after telephone call���C�u��v������that 'your new heart has been found.'"�� bC�u���������Yep. Giving the old V sign.�� >����� g- Moment of victory.���C�u���栗���[tense music]���������♪ ♪������� But then you sit with all those other feelings��%C�u���>�����of the person who lost their life.�� ������ �That's a whole other side of things too,���C�u��������the sitting with "What is their family going through?"��WC�u���e�����Those were hard emotions to sort out.�� b����� �- They were, yeah. They're still difficult.�� �C�u���ᠥ���- They are still difficult.���C�u�� ������- I think about that a lot.�� ����� IYou know, why me?�� C�u@�������Sometimes you feel the pressure���������of having to live your life��6����� 8in an extraordinary way for those people���C�u@��4M�����who unfortunately didn't have the opportunity.�� �������You know, with all these unknowns, there is one known,�� C�u@��Rq�����and that's that people are falling through the cracks��O�����yof the medical system.��������-The burden should not be on people who are sick���C�u��i������to prove that they're sick.��Ҡ�����It should be on us, as medical professionals,��C�u���������to better understand what's going on and to help them.���C�u���Р����[TV drones in background]�� �C�u������- It was a very hard time for all of us.�� 8����� aWe felt we were losing Julia.�� DC�u���w�����I had nobody to take care of Julia.�� ������ �[soft dramatic music]�� hC�u��蠴���So me and my wife had to make a decision.�� ������ �One of us had to stay home.�� sC�u��1Ϡ����- My dad decided that he wasn't gonna go back to work.�� ������ �And I remember it breaking my heart,�� C�u@�HȠ����because I was ruining everybody's life,����ġ�� and I couldn't control it, couldn't do anything about it.��!C�u��b3�����- We were struggling. I was without salary.���������It felt like an unwinnable battle.�� �C�u��������And then something really extraordinary happened.��������!♪ ♪�� mC�u���h�����- This is the plane that is bringing Pope Francis�� ������ �here to New York City for the very first time.�� �C�u���1�����Tremendous sense of excitement.��U�����And here he is.��������-- Holy Father!��+C�u��dz�ơ��- He steps out of the plane, and it's almost like he makes,��,�����Vlike, a beeline straight to me.���C�u@���)�����- Holy Father.��y������- And, Julia, how come you're in the wheelchair?��ؠ�����I understand you're fighting a tough fight, right?�� IC�u���@�����- Well, I've been undiagnosed for four months,�� h����� �and I have a clinical diagnosis of Lyme disease.�� C�u@�� �����- And why did you come here today?���������- I came here 'cause I wanted to meet the pope,�� ������u'cause I believe in a miracle.���C�u��)������- You believe in a miracle.�� ������ �- She just garnered a lot of media attention.�� �C�u@��>O�����We started getting phone calls from every network.�� ������ �- This was the strangest story.��`�����PA vibrant, healthy 12-year-old girl.���C�u@��V������- You know, suddenly, in, like, a second,��ؠ����my life just changed.��䠪��� - The mothers at Julia's school,��[������they started this GoFundMe page���C�u@��p)�����that was very successful.��������- We started getting bombarded with letters��Ҡ�����from all different people who had Lyme disease���C�u���������around the world.��ؠ����- We went from being alone��O�����{to being, like, exposed.�� IC�u���������And, you know, we didn't realize it then,��%�����Obut we were in the middle of a tremendous controversy.�� 2C�u@���8�����- Convinced that Julia had chronic Lyme,��%�����Oher father decided to fight back,��O������only to find himself right in the middle��C�u@���+�����of a mind-boggling medical war.���������- There's a lot of misinformation out there��+�����!about Lyme disease.���C�u���Y�����- Wormser was a lead author���������of Lyme treatment guidelines followed by the CDC.�� �C�u@���栣���Recently, he equated some���������of the chronic Lyme conversation to fake news.�� ꠡ����He never treated Julia,��C�u�������but he influenced many who did.�� h����� �- I'll never forget the day we got the phone call.�� �C�u��%�����I went outside to have a cigarette,�� ������ �and my phone rang.���C�u��9_�á��And I pick up the phone, and it's somebody from the CDC.�� �C�u@��� ����Not too long after that,��U�����Julia was interviewed by Fox 5,�� =������and I excitedly shared this information�� �C�u���������with a list of my contacts.��U�����~Somehow, my email was sent to Dr. Phillip Baker.��C�u@���K�����Here's another man who has never met us.�� ꠫��� He has never had the opportunity��[������to look at Julia's medical records.�� C�u@���-�����And he writes, "Since the results of laboratory tests���������"for the diagnosis of Lyme disease were negative,�� DC�u@���m�ɡÁ"were other possibilities considered to explain such symptoms?��u������"If not, wasn't this child denied the opportunity�� �C�u�������"to get the medical treatment she deserved��̠�����"by obsessively focusing on Lyme disease?��VC�u@��%������"Perhaps this is the most tragic outcome���������of this sad story."��Ҡ�����Julia has been tested for everything under the Sun,��KC�u@��F͠����several times.��̠�����I guess they have their own motives�� I�����ifor being interested in Julia's story.�� �C�u@��b������But I can't imagine any medical professional�������-who holds a high position in the CDC calling a patient���C�u���P�����to deter them from treatment of any disease.��Ӡ�����How does that make sense?���C�u���m�����[ambient nature sounds]�� �C�u���蠻���- Investigate the CDC! Investigate Lyme disease!��E�����oInvestigate the CDC! Investigate Lyme disease!��|C�u��ܰ�����- Doctors need to realize it's everywhere.��Q�����{I mean, birds fly, animals roam,�� >C�u���������people travel and pack their bags�� Ǡ���� �with clothing that they've been out in the woods with.�� �C�u@�� =�����- Every doctor I've been to��7�����ais saying, like, "We don't treat Lyme," or...�� 𠯡��{- Yeah. - "It's all in your head…"���C�u@��"������- Yeah. - Or they'll see the strands.��a������"Oh, is not-- is not the CDC positive?"��&����� �- You see, that's--that's-- - "So you're fine."�� �C�u��:5�����- Investigate the CDC! Investigate Lyme disease!���C�u��P4�����- We understand that patients who don't feel well�� ������ �are desperate and seeking answers.���C�u��f������But we're concerned that some of them�� h����� �fall into a trap of being treated for things�� �C�u��}�����that ultimately are not helping them.�� ����� 9[tense music]�� CC�u���������- There are very powerful forces standing in the way�� 𠱡�� of progressive attitudes towards Lyme,�� bC�u���L�����most notably Centers for Disease Control��Q�����{because they are the leader not just for this country���C�u���⠵���but for all of the countries in the world.�� ������ �And their intransigence has created just--���C�u@���v�����just a world of problems.��������[music building]��ݠ���� �In the early '90s,���������I was actually invited out to CDC Fort Collins.��'C�u��Z�����You know, I gave a talk there.��~������And afterwards, we all went out to ski.�� �C�u@��)�����I've had very good relations with many of the folks��%�����Oat CDC over many years.��Ҡ����KIt's not the people.��ZC�u��3������It's the policies.��U�����And the question is, who sets CDC policies, and why?���C�u��Lh�����♪ ♪���C�u��l��á��- One of my major stories for the "Poughkeepsie Journal"��P�����zwas when I obtained a sheaf of emails,��JC�u���������2,500 pages, actually.�� �ơ��These emails were between the major players in Lyme disease���C�u���Š����as well as officials in the CDC and NIH.���C�u���Πá��The emails belied a sort of "us against them" mentality.���C�u��ܘ�����In one email, this researcher from Yale�� ������ �by the name of Durland Fish was commenting�� �C�u��򗠳���how Lyme disease groups were organizing.�� 𠥡�� They were holding protests.�� DC�u�� �����What he said was, "This battle cannot be won�������-"on a scientific front.���C�u�� L�����"We need to mount a sociopolitical offensive.���������"But we are outnumbered and outgunned.�� C�u�� 59�����We need reinforcements from outside our field."�� �C�u�� Q������There was another very telling email.�� ����� 3In 2007, Phil Baker was leaving���C�u�� o�����the National Institutes of Health.�� D����� mHe was the person who decided on grants���C�u�� �������for Lyme disease research.�� 񠵡�� And what he said was, "I'll certainly miss�� �C�u�� �n�����"all of you people-- the scientists--�� ������ �but not the Lyme loonies."�� �C�u�� �u�����When I asked him for a comment,�� C����� mhe said, "That might be too kind a description."��C�u�� �РϡɁAnd one more, from an official at the National Institutes of Health:��i������"What we have here is a war,�� �C�u��!G�����"an insurgency against evidence-based medicine.��젭���It's time to start shooting back."�� CC�u��!/������[birds singing]�� �C�u��!`������- It's such a bad article, the computer doesn't even��������want to open it up.���C�u��!u^�����[laughs]��a������That happens sometimes.��[�����"Antiscience." Huh.�� bC�u��!�������Who, like, publishes this stuff?�� ������ �[inquisitive music]�� �C�u��!�_�����♪ ♪��_C�u��!�Ҡá��So one of the problems with these antiscience articles--��K�����tthey sort of make these broad claims.�� �C�u��!�7�����And then they make it, like, people like me,��̠�����who would question the testing, the treatment,���C�u@��" $�����and try to lump me into people who believe, you know,��Ӡ�����that the Moon doesn't exist and the world is flat.�� C�u��"$Y�����And they're deflecting the real issues.��U�����What kind of a disease is it that you're ostracized�� \C�u��"D���by the very community that should be helping you?�� g����� �I don't think you have to have an MD to think���C�u@��"X������there's something wrong here.��+�����TWhat is it that these people have in common?�� 񠻡��nAnd you could either say they all have in common��7C�u@��"ou�����that they're crazy,��`������or you could say there's, like, something out there��������Vthat's causing this.��`C�u��"�U�����[bell tolling]�� ������ �This may be some of the first Lyme science��yC�u@��"�נ����being done on this campus.�� �����6And in fact, some of these projects������� �are really the first to be done in this country.�� IC�u@��"�������These are ideas that I've been working on��y������and my colleagues have been working on���������in the cancer field for, you know, 20-plus years,�� �C�u��"���ȡand now we're finally gonna be applying this to Lyme disease.���C�u��# �����What if I told you that we could image�� ������ �Lyme disease in your body?��Z�����?[machine whirring]��yC�u��#������[inquisitive music]�� ������ �♪ ♪�� �C�u@��#4n�����Can you imagine going to a doctor and say,��y������"Wow, you've got pain in your left knee.��Ҡ�����"That's kind of interesting, because this scan���C�u@�#L�����is lighting up for Borrelia in your left knee."�� ������ESo we could actually show, on a noninvasive scan,��EC�u��#n ����that you've got the bugs in your body,�� s����� �and you've got 'em where your symptoms are.�� CC�u@��#������We don't have anything like this.���������It's all guesswork.��נ�����I mean, just like it is for cancer,��C�u��#������this would be revolutionary�� >����� hin the way we diagnose�� �C�u��#�/�����and then the way we treat.��&�����!Since my transplant, I realized that this field���C�u��#�$�����is sorely lacking, bad diagnostics.�� ������ �We need better therapies. All of you know that.�� C�u@�#�#�����What I'm saying is that we can and we will do better.��������&I'm gonna make you that promise right here.���C�u��$ ֠¡��The timeline that I promised to deliver is three years.��Π�����I mean, that's, like, unheard of.���C�u@��$ ������But that's the pressure I'm putting�������1on myself and everyone else.��̠����'That's, like, a heavy burden, when I know, like,��&C�u@��$8!�����what the desperation is, when people are like,�� ������ �"Well, Neil, you're it. You got to deliver for us."�� �C�u��$O������So, um,�� ������ �I'm gonna deliver for people.�� IC�u��$���á��- After the pope, Julia was taking a turn for the worse.��FC�u��$�������I knew that I had to find somebody���������that was willing to treat Julia for Lyme disease.�� >C�u��$�͠����And I started to realize that there's such a thing��Ҡ�����called Lyme-literate doctors.��~C�u��$�g�����Everyone I would call would have a waiting list��O�����yof six to eight months.��+C�u��$¢����You know, all these doctors are not covered��U�����~by insurance companies.��C�u��%�����It all seemed a little sketchy.�� C�u��%+ݠ����- Over here.�� ����� Take a nice, deep breath.��C�u��%@�����Good.��ؠ����Let me see with your reflexes.��aC�u@��%Y{�����Yeah, they're cold.��P�����yNow, if you start to feel really, really dizzy��U������with this, I will sit you down.��`C�u��%n��ǡ��I just want to see how fast your heart rate starts to go up.�� ������ �- Okay, go ahead. - All right.�� C�u@��%�������Okay.�� �Ρȁ7I'll try and do this for at least, if you can, just for one minute,�� >������so I can get a sense what the pulse rate's running.��%C�u@��%�������- [inaudible] - Is it already difficult?���������- Yeah, yeah. Down, down, down, down.�������� �- If you have to sit down, it's okay.��������c- [inaudible] - Dad, Dad, Dad.���C�u��%�������Just down. - [inaudible]��7�����`- Okay, go ahead. Go ahead. - Down. Down.��頔��� s- Go down.���C�u@��%������- Let me just check the pulse now.�������� �[tense music]��Z�����uI've never seen anyone have a heart rate of 250.�� �C�u��%�v�����- Mm-hmm. - That's--that's off the wall.�� m�����!When I was looking for answers for Lyme patients,�� DC�u@��&�����I discovered that there were multiple reasons��T�����~why people stayed ill.�������� aIt was like going to a doctor's office��,C�u@��&������with 16 nails in your foot, saying you have foot pain.�� 堬��� And the doctor pulls out one nail���������and says, "Come back in a month."��aC�u@��&11�����You still have 15 nails in your foot.���������You're gonna have pain.�������� �Some of it is that the Lyme organism is persisting,�� �C�u@��&F������but part of it is also other infections.�� ����� IRight now, there are at least 18 different��������tick-borne diseases that can be transmitted��%C�u��&_ʠ����by the bite of a tick.���C�u@��&uɠ����You know, the most common coinfections that we see��Ҡȡ�that make people ill is Lyme, babesia, and bartonella. Right?�� �C�u@��&�y�����And when you put them all together,���������the people get much, much sicker.�� J�����K- The first appointment with Dr. Horowitz,��yC�u@��&�g�����when I realized that they didn't accept insurance,�� ������ �you know, that was a red flag.�� �����!I realize now that it's not a red flag.���C�u@��&�2�����That first visit, I think it was anywhere�� ����� Ibetween three and four hours.��y�¡���And so much was revealed to me about Julia's situation.��C�u@��&�砩���- I was in insurance companies.�� �����7I accepted Medicare for at least 25 years.�� ������There just got to be a point���C�u@��'�����when the insurance companies dropped me.�� I����� sThere was just no way to continue in that way,��������!and I had to go outside the system.���C�u��'�����[tense music]�� Ơġ�� �I lost about 2,000 patients within a period of six months�� �C�u@��'-㠪���because I was spending too much�� �����7of the insurance company's money������� bfor a disease that didn't exist.�� �C�u��'D5�����It was like, hear no evil, see no evil.�� ������ �They just didn't want to know about it.�� tC�u��'X������♪ ♪��6C�u��'t�š��- Lyme disease is the first disease of epidemic proportion��à�����that came to light hand in hand�� JC�u��'�z�����with the development of managed care.�� ����� >- When HMO medicine started taking effect�� �C�u@��'�y�����in the 1980s and '90s,��%�����Oit was easy to practice medicine��1������for people that had straight diseases���C�u@��'�H�����like high blood pressure, high cholesterol, diabetes.�� I����� sI could get them in and out in 10 to 15 minutes.��U������That was simple.��C�u@��'�v�ӡ́The problem with Lyme disease is, they have up to 38 different symptoms.�� ߠ���� You can't get that done in 12 to 15 minutes.�� �C�u@��'�.�¡��- So here's a disease that's affecting a lot of people,�� ������ �can be costly, and there's been a very active role��VC�u��(o�����of the insurers, their agents, to define��:�����cnot Lyme disease away but chronic Lyme disease away.��uC�u��()q�����[static buzzes]�� C����� mI want to introduce everybody. This is Vicki Logan.�� 8C�u��(@@�����And it is June 22, 2001.��-�����VYou are a former pediatric ICU nurse, correct?��@C�u��(`������So you were a highly skilled professional.���������- And highly educated.���C�u��(u������[tense music]��x������Vicki Logan was a fairly early patient that I saw,�� Ǡ�����around '88 or '89.���C�u@��(������She presented a mystery that hadn't been solved.����ȡ'When she came to me, I studied her very carefully for a year,�� C�u@��(�z�����did all kinds of testing,�������1everything that I knew how to do,��ݠ���� 8not just for Lyme disease but for other,��㠟���Eyou know, conditions.�� �C�u@��(�Ӡ����I knew that she had grown up in Westchester County,�� ������ �and I knew that it was a very tick-infested area.�� C�u@��(�̠����Realizing that she was sick and getting worse,��Ҡ�����I felt that it was appropriate to treat her�� Ơ�����for the possibility that she might have Lyme.��%C�u��(������♪ ♪��ݠ����About a year later, she begged me for a spinal tap.���C�u��) ������I put a couple of ccs of spinal fluid��Ҡ�����in a special culture and shipped it off to the CDC.���C�u��))⠿���Several weeks later, I got an excited telephone call�� ꠲��� from David Dennis from CDC Fort Collins�� �C�u��)@ �����to let me know that spirochetes�� ����� Iwere growing out of her spinal fluid.��yC�u@��)W������He was quite excited about it��ؠ����and actually rather incredulous,���������because he knew that she had already been treated�� �C�u��)rb�����with a regimen that was supposed���������to eradicate Lyme disease.���C�u��)�[�����And at that point, then I really knew what she had.�� ����� IAnd I treated you for 109 continuous days,��oC�u��)�=�����and you progressively improved.�� ����� 2But at a certain point,��C�u@��)�������policies changed at Empire Blue Cross Blue Shield�� ������ �that made it almost impossible for people like Vicki�� 9C�u��)ѱ�����to receive the treatment that she needed.��͠���� \There would be no reimbursement for--��[C�u��)咠����for that kind of care.��Z������In the late 1990s,��C�u��)�������Vicki and about a dozen other patients filed a lawsuit��젰���against Empire Blue Cross Blue Shield.�� �C�u��*��ġ��The litigating attorney was a gentleman named Ira Maurer.�� ����� 9And he brought suit against Empire���C�u��*-蠦���on behalf of these patients.�� J����� s- When you've got lots of disagreement�� �C�u@��*Au�����as to what is appropriate diagnosis�� ������ �and treatment of Lyme disease,��1�����!it makes it very hard for a Lyme disease patient�� JC�u��*[ �����and a lawyer like myself to go in there and challenge���������when an insurance company refuses to pay�� �C�u��*u������for very expensive intravenous antibiotic treatment.�� \C�u��*�̠����- One of the most revealing��̠�����documents in the Lyme annals�� �C�u��*�������emerged from the case of Vicki Logan.�� \����� �One of the witnesses that came on to give testimony�� C�u@��*�Y�����was Richard Sanchez,��`������who worked for the insurance company.�� 𠳡���He really detailed, in a disturbing way,���C�u��*�Р����the way in which insurance companies�� ������ �red-flagged Lyme disease and put up roadblocks.��C�u��*�������- They raised the bar, made it harder for people���������to qualify for the expensive IV treatment,�� 3C�u��+֠����knowing that there were some people��U�����who still would benefit from it and wouldn't qualify.���C�u@��+*G�ȡAnd he considered those people to be the "low-hanging fruit,"�������Ethe easy money to make for the insurance company.��,C�u@��+I�����- In the meantime, some of the same people who created��z������the Infectious Diseases Society of America guidelines�� 8C�u��+e蠬���were consulting with the insurers�� ������ �on their internal Lyme disease guidelines policy.�� \C�u@��+�6�����- So they created the guidelines on the one hand,�� s����� �and then on the other hand, they're getting, you know,���������$600 an hour in the 1990s to deny these cases.��C�u��+�������Leonard Sigal said his fee in 1996 was $560 an hour,���C�u��+�������and he even quipped that it was quite helpful��̠�����in meeting college tuition for his kids.�� gC�u@��+�)�¡��- There's good proof that one can do significant damage���̡Ɓ-to patients by putting them on long-term intravenous antibiotics.���C�u��+�������- If one side in this controversy��͠�����writes the protocol and says no one may be treated�� bC�u@��,������beyond 28 days with intravenous antibiotics,�� g�ȡ �that's going to be disastrous for patients with Lyme disease.�� �C�u@��,(�����- There was a move by some of the insiders��E�¡��oof the Infectious Diseases Society to issue guidelines.���C�u@��,LG�����I was part of the original guidelines.�� t����� �I tried to advise that we weren't ready��O�����to issue guidelines about long-term disease.���C�u��,e5�����We didn't have the information.����¡���You have to be really careful about issuing guidelines,���C�u@��,z������'cause they get abused.��a����� The overseers said, "We need to put out��T������these Lyme disease guidelines."���C�u��,�������And there was some urgency to do something.��~������I mean, there's Lyme disease out there.���C�u@��,�������I said, "Well, we're not ready,���������but I could provide the language."�� D�����J"There are patients who have ongoing symptoms��WC�u��,�~�����"for which the causation is unknown,�� ߠ���� "and it's to be left to the judgment of the physician�� 3C�u��,�㠤���as to how to manage this."��ؠ���� �But that went too far for them.��OC�u@��,�A�����And they removed my draft and put in their own draft.��?�����iIt's like chronic Lyme disease doesn't exist.�� IC�u��-*�����That was Dr. Wormser.��+�����UHe issued a final declaration as far as,�� �C�u@��-)4�����"You can sign it, but we're not gonna��+�����Uhave a minority report," if you will.�� I������And so you're stuck.���C�u��-@������How are you gonna undo something?��,�����UWho's gonna back off?���C�u@��-Wy�����- Unfortunately, I've seen people��1�����[whose lives were destroyed��Z����� �because they went years and years and years�� DC�u��-nŠ����with no treatment or inadequate treatment.��o������And it ate away at their bodies���C�u��-�0�����and their brains,�������1at their organs, until they succumbed.��C�u��-�������So it's a very complex situation,�� ٠����and the insurance companies have made use���C�u@��-�������of that complexity to their economic advantage.�� �������- In my opinion, no way was her care experimental.�� �C�u��-�-�����Her care was absolutely medically necessary.�� n����� �And the necessity of it was demonstrated--���C�u@��-亠����whenever she stopped being treated,���������she would deteriorate in objectively measurable ways,�� ������oand when she got treated, she would improve���C�u��-�%�����in objectively measurable ways.�� ����� 8Vicki went for a number of years���C�u��.������without the treatment that she needed,���������and during that time, her condition deteriorated.��'C�u@��.(������One of her last stays at Northern Westchester,��������%I undertook a long interview with her.�� Ǡ����Vicki, you want to take a couple of minutes�� �C�u��.FR�����to say anything from your own heart?�� �C�u��.������- She experienced a series of grand mal seizures.�� ڠ����Her friend Rosalyn said that Vicki, you know,��yC�u��.�������mouthed to her, "I love you."��U�����~And within a few days, you know,�� �C�u��.����she was dead.��������QVicki's case was reported in the--�� �C�u@��/������in the "New York Times'" Science Times,���������I think in August of 1993.�� �����I fully expected that, you know,�� C�u@��/6N�����that would be a turning point.���������And it's just incredible to me that here we are,�� ߠ�����you know, pushing 30 years later,��C�u��/P_�����and there's still so much controversy�� ������ �and so much difficulty for the patients.�� �C�u��/l⠹���Let me tell you, the deck was stacked against,�� >����� hyou know, Vicki and patients like her.�� �C�u��/�`�����[video static crescendos]���C�u@��/� �����- I need you say, "When I stand up,��+�����U"although maybe I'm weak and I can't walk,��������but I'm not gonna pass out."��C�u@��/�������And that's when I'm gonna know.��f������And that's the thing you have to understand is,��ޠ���� �till the blood pressure is controlled,��������I can't do the physical therapy for the legs.��C�u@��/Ӱ�����- Right, right. - Right?����ʡā�And that's gonna be essential to getting this whole thing done.������� �- Absolutely. - So that's why I'm trying��������Eto go as fast as I can but in a safe manner.�� �C�u��/������- Right, right, right, right.���C�u��0 n�ȡ- Julia, if you could put your arm out a little bit for me...�� �C�u��0(������- Okay. [whimpers]��+�����UDad, I don't wanna. - I know.��������Let him do the blood pressure.�� C�u��0C�u��4�⠸���They didn't believe that persistent infection�� ������ �after antibiotic treatment was possible.�� �C�u@��4߂�����Unless you can prove the spirochete persists,�� 8����� brepeated antibiotic therapy makes absolutely no sense.��C�u��4�)�¡��And I agree with them, that that is a fundamental thing�� ������ �that you want to be able to show.��%C�u@��5p�¡��What totally changed the world of Lyme disease research�������Ewas in 2008, when one of the world's best researchers���C�u@��59������on Lyme disease published a paper showing that,�� ��ġ�� �despite antibiotic treatment, the spirochete can persist.���C�u@��5ZZ�����And then Monica Embers at Tulane published her paper�� ����� Dshowing persistent infection in the monkey model.�� �C�u��5rM�ơ��So if that happens in the mouse model and the monkey model,�� Ǡ���� �why wouldn't it happen in the human?���C�u��5�⠸���- I lead the vector-borne diseases corps here��V������at the Tulane Primate Center.�� �C�u��5�|�����I can infect ten different monkeys�� g����� �with the same strain of Borrelli burgdorferi�� sC�u��5�������and see very different outcomes��T�����~after antibiotic treatment.���C�u@��5�7�����What we found--some were infected in the heart.�� ������ �Some were infected in the joints.��%�����9And probably the most surprising aspect of it���C�u��5�l�����was that we found multiple spirochetes in the brains�� 2����� \of two of our doxycycline-treated monkeys.�� �C�u��6������We know that they persisted.��y����� �- We're dealing with a very unique situation here.�� 2C�u��6������The current Lyme antibiotic��1�����Zdoes not completely eradicate Borrelli bacteria.��C�u��66M�����We found this dandelion phenomenon.�� ������ �The mower is equivalent to the antibiotics�� C�u@��6O:�����that chopped off the top part.���������But because the root, the persister, is still there,�� >�����9they can grow back.��[C�u��6h������You need drugs targeting both parts�� m����� �in order to more effectively cure�� C�u��6~͠����these persistent form of the disease.�� Ơ����!- I think the future is good science�� 2C�u��6�J�¡��engaging top-notch researchers and getting them excited���������about the opportunities in this field.�� C�u@��6�2�����I've always stressed that I think this field��,�����Vcould use people from the outside taking a fresh look.�� C�u��6������Just to be sitting in one place together,�� ����� Italking about the issues, I've got very high hopes,��zC�u��6�������as do, I think, everyone on the team,�� 렷��� that we're heading in a very good direction.�� C�u@��7������- When I was at Tulane, sitting in a room with, like,�������� 15 people from all these major universities,��Ҡ����all top researchers in their field,�� CC�u@��7 �����and for the first time ever,��������they were all in there in the same room,��������Vsaying, "Okay, chronic Lyme,���C�u@��77;�����"we may not have a cure.���������"Chronic Bartonella, we may not have a cure.��Ҡ���� �Let's work on this problem."���������It's super hopeful.��C�u@��7O������But you still have these doctors��7�����awho are digging their heels in the sand.�������� They're recognizing that there's-- a tide is turning,�� C�u��7eV�����and they're becoming more vocal.��+����� �If you have three major universities that come out--���C�u@��7y �����Johns Hopkins, Tulane, and Northeastern--��Ҡá���saying, "We can't kill Lyme effectively in a test tube,"�� =�����cthen you have a major problem.���C�u@��7�S�����You have a major problem,���������because your position becomes increasingly untenable.������� �We have all this animal data showing��������that we're not curing the monkeys,���C�u@��7������we're not curing the dogs, we're not curing the mice,��+�����Uand we're not curing the horses��ݠ���� \with the same antibiotic regimens���C�u@��7�'�����you're supposed to, you know, cure people.�� �š�� DOf course it's gonna change. Look, the truth is the truth,��������and eventually, it comes to the surface.��UC�u��7׵�����But it's bubbling up very slowly,��������&like--like, glacially slowly,�� �C�u��7뿠����too slow for people who are desperately ill.�� ������ �♪ ♪�� mC�u@��8�ġ��- For years, the federal government has spent very little��Ӡ�����to look into the problems of Lyme disease.�� \C�u��8������Compare that to private foundations,�� ��¡�� �which have spent something on the order of $100 million��C�u��89������in recent years on research that today�� ߠ���� is answering some of the key questions�� �C�u@��8Q��á��that weren't even being asked by the federal government,���������by the traditional mainstream researchers.��C�u��8q������They have written over and over�� 䠬��� that Lyme disease is not chronic.�� �C�u��8�Π����They have published in major American journals.�� \����� �And the journals are as invested in that view��KC�u��8�ɠ����as are these researchers, as is the CDC and the NIH.���C�u��8�������So to walk away from that now�� ������ �would be very difficult for them to do.��VC�u@��9;�����- We've come a long way���������from when this seemed like a pipe dream,�� I�����Plike, "Yeah, wow, wouldn't this be great���C�u@��9������if we could actually image Borrelia?"��U�����~And here we are, you know, two years later,�������'waiting to see this all-important experiment.�� C�u��91�����You know, a year from now, we'll be looking at a scan�� ������ �of the first patient getting this...�� �C�u��9H������hopefully.����ȡ�The current tests, you know, only continue to fuel the debate���C�u��9^������of whether chronic symptoms are related�������� to the persistence of living bacteria���C�u@��9zl�š��or whether they're related to, you know, some other cause.��9�ϡɁcIf you could image this in the body, I think that removes all doubt.�� �C�u@��9�������I'm not sure there's a controversy anymore.��y������That, to me, is pretty definitive evidence�� s�����@that you've got the bacteria��UC�u@��9�f�����and you need to be treated for an active infection.�� �¡�� 8I should have told these bacteria, "Don't piss me off."��&C�u��:������- Oh. Whoa. - Oh, wow.��������%both: Whoa. - Whoa.��ؠ����'Look at that. - Okay. [laughs]��1C�u��:. �����- Starry sky.��7�����aLook at that. - Oh, my gosh.��%����� �- That is, like, spirochete city.�� C�u@��:I�����- You can see aggregates. - Oh, my God.��[������- You can see a little bit of smearing��,����� �and then a bunch of what looks to be individuals.��UC�u��:^Z�����- That's, like, unbelievable. Look at that.��Ҡ���� gThis is in the heart.��䠐���t- Yup.��aC�u@��:}x�����- What if you could attach a toxin��̠�����that just wipes those cells out?��Ҡ�����I mean, that's the magic bullet.��+C�u��:�������- Yup. - Right?�� �����6Kill the target. Avoid the normal tissue.�� ڠ����9This is it.�� �C�u��:�㠫���This is, like, proof of concept.��+�����UWe can actually do this.��O������[soft dramatic music]�� �C�u��:�l�����♪ ♪��נ����Appropriate diagnosis and treatment.�������� �It's gonna save lives.��1C�u@��:�Р����And you know what, and vindication for everyone�� s����� �who has been denied care and told that they're crazy.��oC�u@��;�����This is, like, for you.�������� �Told, "It's all in your head."��T�����9But you know what, it is all in your head.��7C�u��;������It's right there.������� �It's in your head. It's in your heart.��1C�u��;1������It's in your ear. It's in your joints.�� �C�u��;nE�����Good science will trump bad behavior.���C�u��;���á��And when that change happens, hopefully it won't just be�� ����� >at the level of clinical practice,�� �C�u@��;���á��but it'll be public policy, it'll be insurance coverage,��K�����uand all the other injustices that have really been�� �C�u��;�������perpetuated will sort of fall by the wayside.��P�����zI'm very hopeful of the work that we're doing.�� �C�u��;�~�����Every day that I come in, I push our team.���������I implore them. They all know your stories.���C�u��;������- Please join me in welcoming Neil Spector.�� m����� �Neil?��`�����![applause]�� IC�u��< ������- I want to tell you, I think, a hopeful story.��u������We want to develop a "theranostic"--���C�u@��<"#�����a therapeutic diagnostic in one molecule.�� ������ �- Here you are. You're a physician.����¡���You're connected. - We need more research in this area.�� C�u@��<=������That's one of my missions is to raise awareness�� n����� �that this is not a disease that's easily diagnosed�� sC�u��- I might comment that this is fairly rare for a vaccine�� �C�u��EР����to be voted on with so much ambivalence.�� 𠮡�� So that is all for the formal vote.�� �C�u@��E/e�����- In the years since it's been on the market,��ؠ����600,000 people have taken it.����ơ�� �Nearly 300 adverse reactions have been reported to the FDA.���C�u��EPO�����- Panel of experts that advises the FDA�� C����� mfound the story so compelling that it asked the agency�� �C�u@��Ed������to carry out a large-scale investigation�������� of possible harmful effects of the vaccine.��������@- There was a meeting at FDA.�� �C�u��E�ʠ����I was actually invited to go to that meeting.�� 3����� \The star witness at this FDA meeting�� �C�u@��E������was the chief scientist for the Connaught vaccine.���ġ��ESo you got it? Like--like, there was Glaxo and Connaught.�� gC�u��E�젟���Connaught pulled out.���������He said, "Since LYMErix has been given out��C�u��E�i�����"to so many people,�� �ġ�� I"we can see that there are some very severe side effects.���C�u��E�t�����"These are not common side effects,�� ������ �"but some of them are very bad,�� �C�u��F8�����"and I would never recommend vaccinating people�� ������ �with this vaccine."���C�u@��F7�����- There is no such thing as a perfect vaccine.�� ��¡�� �What we can say is that this vaccine is very effective,���C�u@��F0������and it's very well-tolerated.�� >����� h- It's been a nightmare.�� ������Prior to this, I was hunting, fishing, hiking.��JC�u��FR �����- How much has it changed your life?�� ������ �- I don't have a life anymore.�� 2C�u��Ft�����- In April, the manufacturer of a Lyme disease vaccine�� 8����� btook it off the market, citing poor sales�� CC�u��F�������following unproven allegations of side effects.�� ������- The vaccine was taken off the market in 2002.��C�u@��F�堿���We have not had a Lyme disease vaccine for 20 years,����á���and yet those two markers were not restored to the test.��{C�u��F�#�����If you were bitten by a tick tomorrow,�� ������ �this is the test that would be used to diagnose you.���C�u��G������Many people have invested their careers�� ������ �in this model of Lyme disease:��PC�u��G,�����it's easy to diagnose, it's straightforward to cure.���C�u��G2㠵���And that is the story that prevails today.�� ������But it's far different from where we started.�� aC�u��GR�����[building dramatic music]�� >����� h♪ ♪��_C�u��G�������In the beginning, there was openness.�� 2�á�� \There was willingness to consider lots of possibilities.��C�u��G�~�����But over time, doors closed.�� ������iWhen I went back and looked��C�u��G������at some of the early scientific literature,��������'I found a sort of familiar illness.�� \C�u��G������So I'm just going to read from a 1994 letter�� \����� �by Allen Steere.�� �C�u@��G�������"It has become increasingly apparent��y������"that the Lyme disease spirochete,��+������"Borrelia burgdorferi,��0C�u��H⠳���"may persist in some patients for years.�� ������ �"Of particular concern, recent studies have shown�� �C�u@��H-������"that the spirochete may persist in the nervous system�� h����� �and may cause chronic neurologic involvement."��C�u@��HJv�����The word "chronic" is there a couple of times.��&�ȡQ- Some of the authors who have signed on to those guidelines,���C�u@��Hh������if you look at their published work��Z������from the late '80s and early '90s,�� C������their words say exactly what we say--chronic.��:C�u@��H������- Once you get Lyme disease, your body's immune system�� 񠭡�� doesn't deal with it terribly well.��+�����oIt doesn't clear that spirochete from your body,�� C�u��H�������and you can be infected for virtually forever.�� 1����� \- And it's a very scary disease.��yC�u@��H�������- It doesn't really have to be.��a������I think it's overemphasized how bad it can be.�� c�����With prompt treatment and recognition,���C�u��Hف�����it's not a big deal.�������� b- Another concept that has been more or less�� iC�u��H�u�����brushed aside is whether a mother�� ������ �can pass Lyme disease on to her unborn baby.��.C�u@��I ������- It was a dramatic and frightening new development:�� ������ �the germ that causes Lyme��������can also travel through the placenta.���C�u@��I'b�����- On occasion, a pregnant woman��\������has been able to transmit the illness��Ѡ�����to the developing child in the uterus.���C�u@��ID������This may have serious complications��y������for the developing child.���á��KWe don't know how frequently this happens at this point,�� C�u��Ia�����but it is something that we are concerned about.�� g����� �- They did autopsies on these babies�� hC�u��Ix2�����and found spirochetes in their tissues,�� ������ �in their hearts, in their lungs.�� �C�u��I������This was solid science.�� ������ �But it became something that was dismissed�� bC�u@��I�N�����in the mainstream literature and practice.�� ��ǡ���They used to acknowledge that chronic Lyme disease was real.��zC�u��I�頼���They used to acknowledge congenital Lyme disease.�� b�����z- But at a certain point in time,��[C�u@��I�蠸���that became dogma, that there's no such thing�� ꠪��� as chronic Lyme disease, period.��������End of story.��'C�u��I�󠨡��In order to qualify a vaccine,�� Ǡġ�� �it's much more helpful to have a fairly simplistic model,��C�u@��J�����where you can easily tell who has the disease�� n����� �and who doesn't have the disease.��O�ġ��And furthermore, you banish the notion that the infection��tC�u��J2������can persist despite application of treatment.���������If you acknowledge those biologic realities,�� �C�u��JO@�����it makes it considerably more difficult�� E����� oto qualify a vaccine.���C�u��J�ᠻ���- After years of research, it begs the question,�� ������ �why is there still no vaccine people can get�� C�u��J�Ԡ����to prevent Lyme disease?�� s����� �- I think the time has come��������Wto reconsider the decision.�� aC�u��J�������Lyme disease is the only infection that I know of�� b����� �for which there is an effective vaccine,�� C�u��J΀�����but it's not available to the public.�� ������J- And in fact, the French biotech firm���C�u��J�Ơ����Valneva is testing a new vaccine�� ߠ���� that is similar to LYMErix.��yC�u@��J�q�����- Is this vaccine based���������on different medicine than the old one?��̠�����- No, actually, it's quite similar to the old vaccine.�� mC�u@��Kܠ����They did change it a little bit.�������0They removed a protein which they thought��z������may have been causing some health problems.���C�u��K+������But we now know that the old vaccine�� ������ �actually doesn't cause any health problems.�� tC�u��K@�����[inquisitive music]�� ������ �♪ ♪�� ������- There are so many conspiracy theories���C�u��KX������swirling around the public,��Z������like the anti-vaxxers, right?��yC�u��Kn�����And I think what happens with Lyme disease�� ����� 7is that it gets swept up into all of that,�� 4C�u��K�������when in fact, in this situation,�� 9����� bwe're not talking about a conspiracy.�� �C�u��K�A�����We're talking about flawed science,��K�����sscience that has been reinvented�� tC�u��K�R�����to facilitate products.�� ������@- It would be great if we had a vaccine�� �C�u��K�k�����that was effective and safe.�� I����� sBut that's not gonna solve our problem of ticks.��'C�u@��K�.�ġ��And moreover, we can protect ourselves from Lyme disease,�� ������ �but there's other things, as we know, in ticks.���C�u@��L�ơ��We need a vaccine that would attack all of these illnesses.����á���An anti-tick vaccine really would be the ideal approach.���C�u��L9~�ġ��But beyond that, we have this other elephant in the room.��K�����tWe have the many, many people,�� >C�u��LUY�����year after year, who remain sick.���C�u��LlS�����- This is a hard problem.�� m����� �The way to resolve it,�� �C�u��L�ڠġ��it's not to make everything so simple and so cut and dry.��Ԡ�����It is to really look at the nuance.��-C�u@��L�.�����I really did come to believe,��נ����after all of this research and investigation,�� h������that the definition of Lyme disease had been twisted��@C�u��L�)�����to accommodate the passage of that vaccine.���������It was a business interest.��yC�u��Lܔ�����It was a rationalization in the interest of a product��Ӡ�����but not the patient.���C�u��M%������[elevator bell dings]��������[indistinct chatter]�� �C�u��M^렰���- I want you to look at that. - Yeah.�� ߠ���� - This is your brain stem. - Yes.���C�u��Mt�����- This is responsible for balance,���������for swallowing, for breathing, for heart rate.���C�u@��M�O�����This very tip of the brain right here�� ������ �is your motor strip.��נ�����It starts with your hips and your legs.�� �C�u��M�Ƞ����Okay. So look.�� 렘����Gray. - Yeah.��~C�u��M�-�����- Orange, purple, white, that's healthy.�� 렮��� - Okay. - These colors are damaged.���C�u��M�h�����Number five is black.��y������- Yeah. - See the black?��̠�����You have a lot of damage to it.���C�u��N �����You can't even see your brain stem.�� >����� hYour brain stem is completely black.�� �C�u��N$a�����Your motor strip, sensory, all black.���C�u��N:`�����That's why you can't move your legs.���������That's why you can't feel your legs.��OC�u��NR������[choking up] You have your answer today.��Ҡ����&- So I'm not going crazy?���C�u��Nh{�����- You're not going crazy.���C�u��N�렙���Dr. Shroff said�� J����� tthat without treatment for Lyme, this gets worse,���C�u��N� �����and pretty soon, you would have lost everything.�� �C�u��N���¡��Three years of treatment, and I keep questioning myself���������if I'm doing the right thing.�� �C�u@��N΢�����We've been doing the right thing.��������We've been keeping it at bay.��������What did you tell me today during your MRI?�� �C�u@��N�1�����You said, "Why do we have to do this again?��������%They're not gonna find anything."���������See? You found something.��C�u��OѠ����This is why you have the issues you have.�� ������ �Look. They're right there.��������That's damage.���C�u��O ������You're not going crazy.��נ����[tense music]�� �������♪ ♪��_C�u��Oq;�����[somber music]�� ������ �♪ ♪�� �C�u��O�ᠽ���Julia and I initially were supposed to be in India��ˠ�����for three months.���C�u��O�j�����But the clinic shut down, and we were forced to leave.��,C�u��O�5�����Unfortunately, the stem cells really didn't�������,change that much.��$�����{A lot of letdowns.��C�u��O�ᠮ���But if we want to get Julia better,�� s����� �we have to give trust.�� ������cWe have to try.���C�u��O�������[hopeful music]�� ������ �♪ ♪�� gC�u��PD�����We long for her to walk.�� n����� �[indistinct chatter]�� tC�u��P#x�����I would like to see her dance with her friends.�������� I'd like to dance with her.��[C�u��P;��ơ��It's the simplest things that we take for granted every day���������that I pray for with Julia.�� �C�u��PXl�����- My legs hurt.�������� - But we'll get there. [sniffles]��+�����tWe'll get there slowly.���C�u��Po������And I think when we do get there,�� I����� rit's gonna be very rewarding.�� !C�u��P�������[indistinct chatter]�� �C�u��P�������- Let's have a round of applause once again��y������for Julia Rose.��1������[cheers and applause]�� 4C�u��P�U�����- The 16th candle, I've been told,�� ����� Eis for your greatest love, or even your hero.��uC�u��P�8�����When I thought about who that one person was,���������one person came to mind.�� C�u��Q U�����And that was you, Dad.��y������Dad, the greatest doctors in the world��VC�u��Q'Ҡ����weren't able to figure out what was wrong with me,�� 7����� bbut you were.���C�u��Q=T�����Without you, I'm afraid I wouldn't be here today,�� \����� �giving you guys a speech.�� JC�u��QTL�����[cheers and applause]�� �¡�� DThank you for holding my hand through every blood test,��EC�u��Qo������every scary procedure,��U�����~and every single hard time.�� �C�u��Q�'�����You are my hero, my greatest love,�� D����� nand my biggest inspiration.���C�u��Q�F�����My idea of a miracle has definitely changed.�� ������ �- Holy Father!���C�u��Q������- That day, I asked for a miracle,��O�ġ��xand my miracle, in my mind, was getting up from the chair�� ]C�u��Q������and walking and going back to that life���������of normalcy and dancing, and-- and it is still.���C�u@��Q蹠����That's--you know, that would be a miracle.�� Ơ���� �But I think miracles happen every day.��U�ġ��oI think that me sitting here talking to you is a miracle.�� 8C�u��R ������What happened to me and the reaching out��O�����xand the love, that's a miracle.�� ������?[applause]���C�u��R$�����And I think we don't even realize it.�� ������ �The little things every day that we have are miracles.�� �C�u��R@������all: ♪ Hey, baby, ooh, ah ♪�� ����� 2♪ I want to know ♪��C�u��Re\�����[cheers and applause]�� �C�u��R~Ơ����- It's funny, people ask me all the time,�������� "Are you angry that you weren't diagnosed early on���C�u��R����and you could have avoided all of this?"�� ?������And I tell them I'm actually not angry.��JC�u��R�x�ơ��I would certainly never wish what I went through on anyone.��.�����VBut, you know, in some sense,���C�u��R�נ����I feel like it was part of the bigger plan for me.�� �C�u@��SĠ����Wasn't always pleasant, but you know what?����ɡÁ&There's been so many good things about what I've gone through.�� C�u��S:������Whether I live five hours, five days,��Ӡ�����50 months, or 50 years,�� sC�u@��SS������it's got to be, like, a fulfilling life.�� �ǡ���I mean, I can't look back and regret not having done things.��(C�u��Sx`�����[atmospheric music]�� ������ �♪ ♪��!C�u��S�w�����Happy belated New Year.�� ������ �People have asked me if everything's okay.���C�u��S�/�����They hadn't heard from me in a while.�������1And I just wanted to send this message.�� \C�u@��S�根���You know, I may look tired. I am pretty tired.��O�á��yI think I need to conserve my energy for the push ahead.���C�u��T������I made a promise to all of you�� Ǡ���� �that I would continue to work tirelessly.���C�u@��T!�����I will continue to honor that promise,�� Ƞ���� �and my thoughts and prayers are with all of you.��������So take care.��[C�u��T3������[soft dramatic music]�� ������ �♪ ♪��_C�u��T�������I've taken care of people at the prime of their lives,�� 堪��� great jobs, beautiful families,��OC�u@��T�������devastating cancers.��1�����[Like, "Why did this happen to me?"�� ������I mean, that's the universal question,���C�u��T�(�����"Why did this happen to me?"��,������My grandmother used to say to me, "Why not you?�� �C�u��T�۠����Why shouldn't it happen to you?"����ȡ�The question is not, "Why?" but, "How do you move beyond it?"�� �C�u��U}T�����[hopeful music]���������- I think about the people who have died���C�u��U�#�����and that are dying��ؠ����and the people who are alone, and I feel very guilty,���C�u��U�L�����because I'm getting all this help,��y������and these people need help too.��UC�u@��U�������I feel like I'm obligated to do this��P�ˡŁyand that this needs to happen in order for there to be a change.�� �C�u��U�'�����I was a different person before Lyme,�� C����� ma normal girl.��O������Now is the time for action.�� lC�u��U�������We must stand together as one.�� g����� �For the people suffering right now,�� �C�u��V������let us be their voice.�� ������ �For the people we have lost,���C�u��V"ܠ����let us grieve them and fight in their memory.�� ������ �I'm determined to bring about change,���C�u@�V7c�����and I trust that together, we can bring hope�� b����� �to those who have forgotten the meaning of the word.�� �C�u��VZk�����My mind is there, but my body isn't yet.�� ꠻��� But I'm determined, even if I am in a wheelchair�� C�u��VnȠ����and I am sick,�� >����� hI want to help more people.�� �C�u@��V�������- You can't give up.�������1Because if it was you, your family,��y�á���you can't just turn people away and say there's no hope.��zC�u��V������People are contacting me all the time,��U�����from all over the world.���C�u@��V�a�����I need to share this information��ܠ����because this is a worldwide epidemic.��������>- The whole world is in disastrous situation�� !C�u��Wꠡ���because of the position�� ������ �of a small group of experts���������at the IDSA���C�u@��W(������in the United States of America,���������because they made recommendations,�� >�����Kand it was imposed to the whole world.�� 2C�u��WO!�����- So here we are in the midst of a huge epidemic.���C�u��Wc������We've all come to an understanding�� ������ �of what this can mean in our everyday lives.�� C�u��W������In the case of COVID, we are accepting�� ������ �that there is something called long-haul.�� C�u��W�������The difference is, they are being taken seriously.��Ǡ�����But Lyme disease has been this quiet epidemic��QC�u��W������for decades.��,�����tWe all have to realize that we're at risk.��@C�u��W�𠯡��This is a growing and common threat.��cC�u��W򴠟���And yet for too long,��+�����Uthe problem has been minimized.��xC�u��X Y�ġ��Settling this debate is going to require new researchers,���C�u��X!L�����new science.�������� 8We need new ideas about Lyme disease�� �C�u��X:������and people who are willing...�� �����iTo challenge the old guard.�� C�u@��YM�����- Right by my tweezer, that's a larva,�� ����� >and it's fully engorged.��U������It's probably going to drop off today.�� �C�u��Yj䠻���The fully engorged larvae look like poppy seeds.��y������One larva, right ear. One larva, left ear.�� �C�u@��Y�v�¡��- We have an early warning in your health this morning.�� b�աρ �- Scientists predict this could be the worst Lyme disease season in years.��S�k ������C ���������� ������b�����&���� �����������&����_�����������\���� ���������������� �����Zݷ��������� �����p5���������� 8���������������� �����������������������������6�� D����Ǝ����������������b��������1��������4�������������������������� �����`��������E�������������R����e�����������R��/��������G�����R��g��x��������������� 廕������ ����ӻ����뷎��� ��+��������������K����6�����=�����K����u�����Ʒ���������<�����,��������'��������෎������L������������������ ������&�������K��[���������������� ����ݷ�������<�� ���������������� 仕�����������1�� �����3�����L���� ������������������;ķ�������4�� >����G,����� ���� b����S������ ��<��6����Y����� ��Z��~����`������ �����黕��dӷ���� ���%�������k������ ���G��1����q۷���� ���a��+����y0�����!���� h�����������!��&�� ������������!����� >����������!���F�� 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