Lyme Hero Kelly Downing Brings Us Hope

This week on Lyme Light Radio with Katina, we meet a remarkable woman of heroic character. Kelly Doolan Downing was severely afflicted for twenty years with advanced neurological Lyme disease and co-infections, to the atrocious degree of being paralyzed from the neck down. A prominent New England hospital had no answer for her and more or less rejected her case as an “unknown circumstance.”

Blessedly, Kelly got to a Lyme-literate doctor via friends and family liaisons and was properly diagnosed and treated for Lyme disease. Some of you may recall Kelly appearing on the Katie Couric Show with Dr. Richard Horowitz.

A very warm woman with an incredibly effervescent personality and deep conviction, Kelly Doolan Downing spearheaded a 5K Walk/Run for Lyme awareness with the TBDA Alliance in Nashua NH on September 20. For Kelly to be well enough to participate in an athletic event and now advocate for tick-borne disease shows the world you can overcome this illness and thrive!

Please join us Wednesday, October 15 at 4PM ET/1PM PT at http://www.transformationtalkradio.com as I welcome Kelly Doolan Downing to Lyme Light Radio.

Katina Makris, CCH, CIH

http://www.LymeLightRadio.com

KeKelly Downinglly Downing is a wife, mother and teacher. She was an intensive special educator for 15 years and taught various ages, but her favorite age was early childhood. Her husband is also a teacher and a coach, and their sons are involved in many sports. Unfortunately, two years ago her life drastically changed and I found herself in a different kind of race. She was up against the biggest obstacles of her life, when she became partially paralyzed in January of 2012 and totally paralyzed in December of 2012 due to Chronic Lyme and tick borne diseases. She spent three months at an inpatient rehabilitation facility (Kindred Healthcare) fighting against the chains of tick borne diseases in hopes to regain any use of her body. Thanks to the selfless determination of the therapists, countless hours of hard work, her Lyme literate doctor and a community of prayer, she is now able to “move” through the neurological and multi-sensory impairments that she continue to still battle. Kelly is continuing to educate her community, schools and churches about the effects of Chronic Lyme disease and the importance of protection and prevention of ticks and tick borne illnesses. She is also in the process of writing a book. Kelly says, “By the grace of God and a community of heroes, I am continuing to try to heal and persevere. When life gives you lemons (or Lyme)…God gives you strength because of the heroes He puts in your life!”

Lyme Disease Presentations in Connecticut

For those who have asked, here is my Connecticut speaking schedule for next week! I have three great stops, so do come join me~~ informative and inspirational! Bernard’s is a lovely French restaurant known for their fine food and author events. The other two are free and all welcome.

Thursday, May 2, 2013 – 12pm to 2pm
Bernard’s Authors Luncheon
$25.00 meal and author book signing and talk
Ridgefield, CT

Thursday, May 2, 2013 – 7pm
Lyme Research Alliance
Greenwich Town Hall
Cone Room 2nd Floor
101 Field Point Road
Greenwich, CT 06830
Public Welcome
Contact Ruth Ann Desantis, ruthanndesantis@gmail.com

Saturday, May 4, 2013 – 2:00 to 4:00pm
Meriden Public Library
Cook Room
105 Miller Street
Meriden, Ct 06450
Public Welcome
Contact Crystal Carter, raincarter0801@yahoo.com

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Carolina On My Mind

Four whirlwind days in one of my favorite states- North Carolina! I’m partial to this land of windswept beaches, blue tinged mountains, and stretching midlands. Most likely this ties in to my years living here, while at Duke University. But, the soft springtime air and gracious hospitality of North Carolineans cannot be dismissed. There is an easy comfort to this pretty region, and some mighty fine food to be savored!

Durham has blossomed. From the old smoky tobacco town I knew in the 1970’s, with its narrow downtown streets scented by a sweet aroma in the gentle mornings, the former, decaying infrastructure has been revamped to a vital commercial district. The college students must love it- great restaurants and clubs, darling shops and tree-lined, freshened streets everywhere.

The relic wooden slat Durham Bulls AA baseball stadium I used to watch minor league games at with my college boyfriend was funky; squeaking bench seats and old-timers spitting chew liberally. It was a colorful slice of small town pro-ball. We liked it. Now, Durham Bulls boast a gleaming, snazzy stadium, rivaling a major-league park in its glamour and comfort. What a skyward leap!

Duke, as you can imagine, has grown astronomically. Tons of new science buildings, hospital expansion, air-conditioned dormitories sprouted amid the old woodlands. I understand the need for progress as a cutting-edge campus and my heart shrank a tad, wistful for the former tie-dyed, frisbee days on the quad. The iPod force of sleek students trailing to classes is less congenial. My alma mater, however, still glowed benevolently in the fine Carolina springtime. Cherry blooms and daffodils dancing were bits of color to my New Englander’s snow-trained eye. What a delicious taste of beauty!

Though treasuring some reunion time with old friends, I came to North Carolina to work, and what long hours I expended! This state is severely infested with ticks, the primary Lyme disease carrier. Over a dozen people told me they pull at least 20 ticks off their bodies each summer, and a dozen a day from pets! Mild winters, lots of low-growing vegetation, and being in an obvious migratory bird fly-way brews a prime Lyme disease habitat. The very sorry situation is the North Carolina doctors and residents are extremely uneducated about this surging epidemic illness.

The North Carolina Lyme Disease Foundation brought me in to help amend the denial, offer solace to the stricken and promote Lyme dialogue. Special thanks go to John Dorney, President, Jan House, Treasurer, and the busy efforts of Frances Kuhlbars and Emily Amber for your excellent support and PR assistance. Dr. Jason Chow of Chapel Hill, and Mary Marchbanks at Carolina Hyperbarics, your generous alliance made dual locations possible for my venues.

As I am all too familiar with, now 40 “Lyme Talks” later, the stricken and caregivers limped in. The weakness, palsies, ashen color are palpable touchstones to my former Lyme-addled life, too. Yet, I gave two inspired, informative presentations, one in Raleigh, the other in Chapel Hill, while fielding massive Q&A’s. So much help is needed, with less than a handful of Lyme-literate doctors in the state. But the work has begun! As the first person to come in from out-of-state to offer support, I am honored to be a lamplight of hope and urge you on to keep Lyme disease awareness work in motion. Inroads can be made.

Dr. Jason Chow is asking all NC residents with Lyme disease to write up a clear, one page story of their Lyme illness and email it to lymeletters@ gmail. com, by April 15th. He aims to present 1,000 Lyme cases to the state Health Department, establishing that Lyme disease does exist throughout North Carolina and it needs recognition! Please participate if you are a resident. This very same measure needs to be modeled in all US states, helping us define the epidemic.

My speaking engagements were long and rather energetically demanding on me, but very worth it, as I know how crucial hope and resource is for those struggling. Having walked the “Lyme Road” for ten arduous years, I intimately fathom the importance a hand-hold of comfort provides.

Thank you one and all for coming out to meet me. I hope “Out of the Woods” finds a special place in your heart. And, lovely North Carolina, you still charm a Yankee girl like me with your blissful springtime grace!

 

-Katina

“The Florence Nightingale of Lyme”- California was Great!

A whirlwind week in California, bringing Lyme disease resources and tools to many, was a wonderful experience! How fortunate I was to stay with cherished old friends, meet such special people and soak in the glorious spring sunshine. These “Lyme Mission” trips I have been making since “Out of the Woods” was published in November 2011 are nothing short of miracles. So much good comes from it all!

I am ecstatic to have regained my health, to be strong enough again to travel nationally and speak on behalf of Lyme. The universe aligns me time and again with fortuitous connections, opportunities and support while on the road. And to be instilling hope and camaraderie amongst the townships I visit feels so important. Most vivid to me is that my personal Lyme experience and professional knowledge are making a difference.

My heart just beams each time one of you tells me how helpful “Out of the Woods” has been. I know in that moment I did a good job with the book. And, then, the heartfelt handshakes, hugs and tears shared at the end of my presentation strike so deeply in my core. I’ve walked the “Lyme Road” with all of you and when I feel your suffering, confusion and fragility at these talks I feel inspired to keep at it all, even though it is hugely time-consuming and not financially profitable. The healer in me cannot let others flail.

So, with deep meditations, resting, swimming (when possible), and the laughter of friendship buoying me while traveling, somehow, I believe that if I keep at this- visiting stricken regions, holding a lamplight of inspiration, making this illness more publicly talked about, I will affect a change. A change for the better- more attention, earlier diagnostics, more thorough treatments, maybe even a vaccine! Am I crazy to be working so hard? Is it possible I can keep it up with only $5 admission at the door helping cover my travel expenses? I don’t know. Yet my instinct says I’m doing the right thing.

One of my attendees said “Katina, you are the Florence Nightingale of Lyme, comforting others and pushing for change. Thank you.” That was a sterling remark to hear uttered. As an eight year old girl, my favorite books were Florence Nightingale’s biography and “Little House on the Prairie.” Here I am, ministering to the sick and seriously wounded. Life is a marvelous, spiraling pirouette!

Thank you Maritza Padgett, Bonni Rooney and all my fabulous new friends at San Diego Lyme Support. We had a daffy series of monkey wrenches and we overcame. We were bounced out of the library by a big bash with the mayor, superseding us, a mere 24 hours prior to my appearance. Frantic phone calls, emails, makeshift signage, and we relocated to nearby Hoyt Park, my first outdoor venue. Maritza’s pop-up tents, folding chairs, and a stalwart Lyme tribe gathered. Then! The automatic sprinklers erupted, drenching us and necessitating makeshift dams constructed from random rocks and tarps! Lymies are survivors- we enjoyed two wondrous hours together! Amen.

More thanks to Shannon Connoyer, Sandi Bohle, and my new friends at Ventura Lyme Support. This event went along more smoothly, yet we lost a few folks due to our location somehow not showing up on GPS!

I appreciate the stricken, the caregivers, the healthcare providers, for joining us, all your great questions, and of course our famous synergy. My visit with each host was a delight.

Back home now, I’m prepping for North Carolina in April and getting the sponsorship package together for my upcoming radio show; “In the Lyme-Light with Katina Makris.” This is a huge step for Lyme- our own radio talk show!

So many more events to come in 2013, and my efforts to get “Out of the Woods” in audio format continue, as well as foreign translations. We’re off to a superb start!

Thank you California! You treated me well and I hope I brought you some solace and inspiration. The human being is an amazing creature. We are resilient, endowed with inner riches and capable of transformation. I honor the power within us all.

 

Carolina Here I Come! Lyme Disease Author Brings Hope and Help

The North Carolina Lyme Disease Foundation has invited me to come to their Lyme-ravaged state, bringing pertinent guidance on this swiftly spreading infectious illness epidemic. This is a very exciting opportunity for all!

Unfortunately Lyme and its co-infections have slipped under the radar in all of the South. Most doctors are completely unaware that Lyme is active and spreading, misdiagnosing thousands of cases as the flu, lupus, MS, CFS, ALS, fibromyalgia, arthritis, peri-menopause, depression, anxiety, food allergies, and more. They are following outdated CDC and Infectious Disease Society information from the 1980s that labels Lyme Disease as a mere short-term, two week condition.

Clinical evidence has established that this corkscrew bacteria migrates from the bloodstream, to joints and soft tissue, and eventually to the brain and nervous system, creating assorted chronic symptoms and triggering auto-immune style illnesses.

Currently, there are a mere handful of healthcare practitioners recognizing and treating chronic Lyme in North Carolina. Much education needs to be done.

My two talks, in Raleigh and Chapel Hill in April, are open to the public and sponsored by the North Carolina Lyme Foundation. I will present critical information and guidance on signs and symptoms, diagnostic labs, prevention, and treatment. April 7 in Raleigh, April 8 in Chapel Hill. See details below.

Please tell all of your contacts and friends to come and spread the word! This is the first time anyone has come to North Carolina bringing any sort of help or hope. I am honored to be the first “missionary” in, and of course aim to shift the tides of misunderstanding and Lyme denial in the South. Let us envision this trip as the tipping point!

Please follow the link below for dates, times and locations of these events.

NC ad Natural Awakenings

A special thanks to Frances Kuhlbars, Emily Amber, John Dorney, Jan House and Jason Chow for helping these events happen.

Katina

Lyme Disease Radio Interview

For those of you who are in the mood for a nice review of Lyme disease and a glimpse into my 10 year personal experience dealing with this quixotic, often decimating infectious illness, listen in below to the interview I did recently with Eric Chamelik, a welcome host and nutritional counselor.

We explore many of the Lyme essentials and expand into recovery tools. This is a great show to share with others in need or curious about the world wide issue of Lyme disease.

http://www.blogtalkradio.com/getbetterwellness/2012/11/15/the-get-better-wellness-radio-show-with-erin-chamerlik

ENJOY!!

Katina

Sign Petition for Lyme Disease

This is a very important step for millions of people suffering with a long misrecognized disease. Please sign this petition to get Social Security to cover health care costs which have put so many into bankruptcy dealing with medical bills from doctor mismanagement and endless tests regarding Lyme disease. Thanks.