I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Saturday
May192018

Lyme Connection Conference May 17, 2018

If you missed the Lyme Connection conference this year, read on for some notes. Hopefully, all speeches will be available online soon because they were filled with important information, wisdom and hope. I was fortunate to attend and also, with advocate friends, to again run the Lyme Disease Challenge table where we encouraged people to "Take a Bite Out of Lyme." 

Note that any errors or misunderstandings with the following information are mine. 

Mr. Lew Leone, vice president and general manager of WNYW-FOX 5 TV, was honored with the Courage in Journalism Award. He spoke about how Lyme has affected his wife and went on to thank Yolanda Hadid for she "took Lyme awareness to the next level." Fox News produced the Emmy-award winning Lyme and Reason: The Cause and Consequences of Lyme Disease and a follow up, Lyme Disease and the Voice of Change. 

Dr. Neil Spector than spoke via video. He is a top oncologist/researcher at Duke University School of Medicine. His speech about his journey from doctor to undiagnosed Lyme patient who nearly lost his life to this disease was moving and insightful; you can purchase his book Gone in a Heartbeart. He is now an integral voice for the Lyme community.

Ms. Dana Parish, award winning Sony singer-songwriter, advocate and writer, who has grappled with Lyme herself, took the podium. She stated that a few years ago, she happily attended a wedding and over the course of one weekend and a tick bite, her life changed forever. You can read more of her story here. Dana Parish has published several articles with the Huffington Post and has garnered many accolades for her advocacy work.

Despite suddenly having fatigue and insomnia, suicidal depression and hallucinations, she was "entirely failed and dismissed by mainstream medicine." Dana Parish said, "If you think you have the summer flu, it's probably Lyme." 

Some words of wisdom:

-Three weeks of Doxy fails 61% of the time according to one study and over 30% of the time according to another. That's a high statistic.

-Doctors only see what they know. They don't know how to connect the dots.

-There is always a reason when you body goes haywire.

-Don't trust anybody but a Lyme specialist when it comes to Lyme.

-Lyme and Bartonella are chronic stealth infections.

 

Dr. Steven Phillips, renowned doctor and researcher, was the final speaker. He spoke about treating many patients, even his own father who couldn't get proper medical help for Lyme. Dr. Phillips is currently writing a book with Ms. Parish.

-Lyme and co-infections create "a soup of infections."

-2/3 of people diagnosed with Lyme have Bartonella

-Bartonella is tightly linked to a range of autoimmune conditions

-it's pretty common to have asymptomatic Lyme in your body

-IV antibiotics are not superior to oral antibiotics; some patients respond better one way or the other; IV antibiotics do not necessarily circumvent the gut; IV rocephin gets excreted through the GI tract

-Dr. Phillips uses pulsing in his practice; the bacteria tends to hide/go dormant so pulsing kills them when they re-emerge

-You can't kill Lyme in the test tube with doxycycline or rocephin, amoxicillan or ceftin

-"Post Lyme Syndrome" is an 'idiotic fabrication" according to Dr. Phillips. You would never come up with a term like this for cancer or HIV; it's a slap in the face.

-Herxheimer's reacions can last a very long time, months even.

-"Blebbing" also occurs. Blebs are intrinsic to autoimmune illness. Spirochetes release blebs into tissues. (Editor note: this is the first time I ever heard about blebs; please comment if you have more information!)

-Psoriasis can respond well to Bactrim

-There is no definitive cure for Bartonella

-Both Lyme and Bartonella will turn off the immune response to infection (anergy)

-Diflucan can kill Lyme and is an anti-fungal

-Lyme doctors don't take insurance because they spend much more than the covered 10 minutes with a patient, often 1-1/2 to 2-1/2 hours for the initial visit and between 1/2 - 1 hour for follow-up visits. Insurance will not cover this.

-Sleep disorder is a neurological symptom

-329,000 NEW cases a year of Lyme in the USA at minimum; 20% of these become chronic

-Lyme is prevalent in Scandanavia yet there are nearly no treating doctors there

-Eating Paleo can get the pain down in some people (it helped Dana Parish) but according to Dr. Phillips doesn't help everyone

-Bad herx? Stop antibiotics, some people use Epsom salt baths, burbur/pinella

-DNA tests, PCRs--some labs use a target that doesn't get expressed with Lyme; testing for Lyme is often erroneous; there are many false negative results

-IVIG can benefit PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome)

-Dr. Phillips has seen some adult versions of PANS (and therefore maybe we need to get rid of the "P" which stands for Pediatric.)

-Flagyll is carcinogenic

-Alinia, on the other hand, does not cause cancer

-Bartonella is associated with psoriasis

-Infrared sauna can help with psoriasis

-Some veterinarians have concerns that the Lyme vaccine can cause kidney failure in dogs

 

Written across Mr. Leone's slide was the quote, "From caring comes courage."--Lao Tzu.

Mr Lew Leone, Dr. Neil Spector, Ms. Dana Parish and Dr. Steven Phillips have all had a personal relationship with this disease. All four have taken the knowledge and experience they gained and are courageously working to increase awareness, introduce alternative treatments and support others. All four are making change for those who yet cannot. 

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