View “Lyme and Reason” special report here
LYME AND REASON: THE CAUSE AND CONSEQUENCE OF LYME DISEASE” presents an in-depth look at the cause and effect of Lyme disease, including the controversy over testing, the issues of misdiagnosis, and the personal struggles of medical professionals and patients contending with this life-changing illness.
The special report on Fox5NY first aired on June 30, 2016. The station has since made it available on YouTube.
Here are individuals who are interviewed in the segment:
–Brian A. Fallon, MD, MPH, Director of the Center for Neuroinflammatory of the Lyme and Tick-Borne Diseases Research Center at Columbia University talks about the cause of Lyme disease and what you should do if you’re bitten by a tick!
-Yale-trained Lyme disease expert Steven Phillips, MD, addresses the controversy surrounding Lyme disease, while Paul Mead, MD, Chief of Epidemiology and Surveillance Activity of The Bacterial Diseases Branch of the Centers for Disease Control and Prevention, offers the perspective from the country’s lead public health agency.
-Singer and songwriter Dana Parish describes how Lyme disease temporarily derailed her music career during the prime of her life, and how she is now raising awareness about this debilitating illness!
-Lyme patient and advocate Susan Green of the non-profit The National Capital Lyme and Tick-Borne Disease Association (NatCapLyme) talks about the burden placed on families in terms of costs for the treatment of Lyme disease!
-Renowned oncologist Neil Spector, MD, shares his own personal story of his transition from doctor to patient, and how Lyme disease led to an emergency heart transplant!
-Actress and TV personality Marla Maples talks about her own diagnosis of Lyme disease, and how she is encouraging other celebrities to share their stories to put the spotlight on Lyme!
-Author, artist and designer Ally Hilfiger, the daughter of fashion icon Tommy Hilfiger, reflects on how Lyme disease stole her childhood, and her mind after being committed to a psychiatric hospital!
–Patricia De La Mora, MD, Associate Professor of Clinical Pediatrics, Weill Cornell Medical College talks about prevention and how to keep your children safe, while Lawrence Putter, DMV – Medical Director Lenox Hill Veterinarians discuss pet safety when it comes to ticks!
-12-year-old Julia Bruzzese shares her heartbreaking story of how Lyme disease has left her unable to walk, and how a blessing from Pope Francis on his visit to NYC last year has given her and her family hope for recovery!
I understand what Julia and the others are going through, i too have had everything taken from me by lyme disease. I was misdiagnosed for 3 1/2 years then finally diagnosed and treated with a regiment of antibiotics which helped some symptoms but after 6 months still had excruciating nerve and joint pain and partial paralysis of my left leg. Now for the past three months i have been on the bx protocol and am finally seeing hope for a future again. The pain has improved 40 percent already and i am able to bear a little weight on my left leg. I still need crutches to ambulate but i can sleep at night again and make small position adjustments without screaming in pain. There is a great deal of controversy about bx protocol but i am living proof it is working !!
I appreciate all the work and publicity; however, we need to be more like Dr. Phillips who dispels the Lyme myths. Firstly, fewer than 50% remember any sort of rash, and LLMD Dr. Jemsek says 50% recognizing a rash is inflated. Secondly, there is no definitive science proving that it takes two weeks, or any other number, for the infection to reach the brain or CNS. Some people’s only manifestation can be psychological. Also, Hilfiger states that if it’s 42 degrees or warmer ticks are out and alive. Please watch this informative video showing deer ticks still alive after 24 hours in 3 degrees. I can attest that we pull live ticks off our dogs in February in Wisconsin – and trust me it’s below zero a lot!
https://madisonarealymesupportgroup.com/2016/01/20/polar-vorticks/
Mainstream medicine HANGS onto the CDC’s symptomology box. Until we dispel these myths people are not going to be diagnosed properly.
Lyme/MSIDS (multi systemic infectious disease syndrome or Lyme with friends as we are rarely infected with just LD or borrelia, the causative agent of LD) can look like ANYTHING.
I had Lyme’s 2 yrs ago went to MD she said it was a spider bite [it was behind my left shoulder so I could not see it] two days later I had a quarter sixe blotched rash [not raised] on my chest. They gave me predisone [sp] I only took two pills the rash started to spread & the blotch’s got bigger. I had lunch with my friends who have degress in epidemeology [sp] they said ti was EM Eratheme Margins a rash associated with Lyme’s/ They called the PA & I tapered off the Pred. & started on Doxie the rash immediately started to fade.
My son was finally diagnosed Lyme 10 month ago after over two years suffering. His main symptom is spasticity over his whole body, he cannot move now and speak.
I am from north central Mississippi and removed an adult deer tick the end of May . About two weeks later I discovered the classic bulls-eye rash as well as a stiff neck and shoulders and general flu like symptoms . Currently taking my second round of doxycycline . Most symptoms have gone except recurring headache and fatigue .
So hopeful that I caught it early enough to avoid serious complications .
CDC has failed the American public with lyme disease. Heads should roll there, and at the NIH. Taxpayers are funding a public health disaster.
I completely agree with you Mark. The insurance companies should be covering treatment as well and are not…it is corruption at its best with a disease that is now of epidemic proportion in this country!
excellent video; thanks for posting this! Hopefully it will raise awareness.
And where is our brilliant CDC on Lyme Disease?
But I’ve been told and read that treatment shouldn’t start for a month to 6 wks, so why does this indicate it should be within the first 2 wks?
Lab tests for Lyme antibodies often won’t show anything for a month to six weeks. That’s a limitation of the test. We don’t believe you should wait that long to start treatment. If there is a high suspicion of Lyme disease (such as known tick-bite, EM rash, symptoms consistent with Lyme disease), treatment should start immediately. –DKL.
Does anybody realize that Steven Phillips, MD charges $2000 for an initial visit and takes no insurance?
It is an unfortunate reality that Lyme doctors who have taken insurance in the past have been legally targeted. (See the film UNDER OUR SKIN for details.)
God bless you guys/gals for posting this videao it is absolutely fantastic.
My first tick bites were 20 yrs ago….never even saw a tick before….can’t say this now. I live on a small farm in SW Ontario Canada….there are loads of ticks…both dog ticks and deer ticks. I am super sensitive now….can feel the smallest one crawling on me. I have been searching for someone to help me…My Elisa and Western blot test are negative….I believe false negative., I get sicker day by day. I suffer from massive leg spasms…my ankles try and turn my feet around backwards. I have balance problems…my legs give out and I fall a lot…not sure why I have not broken something. I have blood pressure problems….one day can be completely normal…next can have ridiculous spikes….record is 198/114. I have chest pain….they can not figure out why. I have Tinnitus…some days it is so loud I can not hear anything else. I have Vertigo. Now I am diagnosed with epilepsy…I also wake up every morning and can not see clearly…it is like being in a fog….then it clears in about an hour. My mind is a fog…have good days and very bad days. I have had kidney infections….now I am being tested for bowel problems….my mouth has been swollen for a year and a half. The pain in my body is unrelenting….at times I am screaming in pain. I can barely walk now…use a walker…next is a wheel chair. I have had two seizures…and something happened in the summer….I woke up and could not move….not a twitch…..don’t know how long I was there for….seemed like forever….panicking…..I live alone….thought I was going to die there….slowly it started to ease on it’s own…next time….I have no idea. I am having Anxiety attacks and extreme depression….that seems to come in waves….sometimes I am okay….other times it gets pretty bad….
All of this and they can not put two and two together and diagnose LYME. My Lyme tests still come back negative….false negative….from an OBSOLETE blood test. Unless I have a positive test they will not treat me for Lyme.
In the mean time a person I met….died from Lyme….he had all the same symptoms….tested negative 8 times..they said he did not have Lyme….he went in the hospital with kidney problems….they thought cancer…well….They finally found out in an AUTOPSY…that it was Lyme….they had invaded his kidneys….when they opened it up it was filled with the bacterium for Lyme.
I figure I am going to be the same…..I will finally get a positive for Lyme Disease in an autopsy.
I used to be a very active person….rode and trained horses…did renovations for a living….now I can barely move around.
I believe I am slowly dying…..the bacterium is killing me….and I can not find the help I need….
What do I do? Where do I go for help? I am dying and there is no one…..
The Canadian government does not believe Chronic Lyme exists. They will shut down Doctors for treating Chronic Lyme. So….my chances are zero of getting help….Thanks for listening.