FOX 5 LYME AND REASON

Friday, 1 July 2016

FOX 5 LYME AND REASON

Thank you to FOX5 for excellent coverage of Lyme Disease - go to the links below for full coverage.

'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, Associate Professor of Clinical Pediatrics, Weill Cornell Medical College talks about prevention and how to keep your children safe, while Lawrence Putter, MD - 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!'

Go to this link to watch the program-

http://www.fox5ny.com/health/lyme-disease/167816324-story

and this link to excellent extended coverage
http://www.fox5ny.com/lyme-disease

and thanks to Lew comment below this is Fox5 You Tube channel of all the videos

https://www.youtube.com/playlist?list=PLcuHpcV2MbFj420zTVNNRoF3jJMJ6kFs5

also not sure how long this will be available on Fox5 Facebook page a Conversation with Dr Liegner and General manager of Fox5 news Lew Leone
https://www.facebook.com/TeresaPrioloNY/videos/582442851927333/?pnref=story

UPDATE - from Fox5 news Facebook page -
https://www.facebook.com/FOX5NY/photos/a.107956651319.116657.39442131319/10154433090686320/?type=3&comment_id=10154434172266320

Our FOX 5 special, “Lyme and Reason: The Cause and Consequence of Lyme Disease,” truly struck a nerve with our viewers. Not was it viewed on TV by tens of thousands of viewers, it has gotten more than 20,000 views on our YouTube Channel, it also elicited over three thousand viewer responses via social media and email. What really caught our attention was the outrage in the Lyme Community over statements made by the CDC and the confusion from the general public as to why this disease is so controversial. Dr. Steven Phillips, a Yale-trained lyme disease expert interviewed in last week’s special, asked us if he could respond to statements made by the CDC, claiming among other things that “Reports of cases of Lyme being mistaken for other diseases are really quite rare” In an attempt to present both sides of this debate and have an open dialogue, I’m posting his comments here for our viewers to see. I have also reached out to the CDC for their response Wouldn’t it be great for all current and future sufferers of Lyme disease if we can at least have doctors who treat this illness and the government all working together to help find solutions and cure people living with this disease. Thank you to the tens of thousands of you who have watched our coverage and to the many hundreds who have offered your feedback. I look forward to continuing the discussion.
Sincerely,
Lew Leone

Please go to the link to read Dr Phillips responses and thank you to Fox5 for posting this.

3 comments:

Unknown1 July 2016 at 15:22
You can also go to our Youtube Channel which also has full interviews. https://www.youtube.com/playlist?list=PLcuHpcV2MbFj420zTVNNRoF3jJMJ6kFs5
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Joanne1 July 2016 at 21:18
Thank you Lew
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Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.

ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

UPDATE

UPDATE 10 January 2012