News From the International Lyme and Associated Disease Conference

The ILADS (International Lyme and Associated Disease) was held at the Westin Waterfront Hotel in ever stately Boston, MA on the weekend of November 2-4.  In the wake of hurricane Sandy’s devastating torrent to the tri-state area, many did not attend as planned, and yet the show did go on!  And, I must say what a stunning show it was.

Arriving to a crowd of 500+, on a windy Friday afternoon as the moody November skies banked my car drive down to Boston, I immediately was caught up in the camaraderie and passion of so many who truly care about the epidemic of our time- Lyme disease.

The common area was thronging with people, colorful display booths by Igenex labs, Advanced Speciality labs, Nutramedix, support groups, more and more flanking the sides.  I joined Mara Williams, “Nature’s Dirty Needle” and Nicola McFadzen, “The Lyme Diet” with my memoir and guide “Out of the Woods,” at the author’s table.  Within seconds I was fielding questions and sharing stories and treatments with others.  The energy was high.

The grand ballroom essentially served as “Lyme Central.”  Each day we were captivated by the intelligent, probing and educational words of 23 speakers in total.  My head was swirling with knowledge by day’s end, as it was like being on an IV of cutting edge Lyme information. Imagine being in a post-grad level medicine or science class 10 hours per day for 2 1/2 days straight!! Your mind is glowing with intake while sorting and categorizing so much in it’s dual hemispheres.

Simultaneously three smaller “break-out” rooms carried lectures on associated Lyme related topics; either Integrative medicine focus, research work, legal issues, pediatrics, toxicity and more. (another 19 speakers).  I wanted to be everywhere at once-in the common area gabbing, the ballroom and break out rooms learning or at my author table sharing!  It was impossible to not be ignited by the dynamic environment and stimulating minds.

The Westin was a lovely setting, a broad sunny building, tall sweeping windows and conveniently located for evening restaurant outings ensemble.  It was a marvel to me, a formerly bedridden Lyme casualty, to be supping tableside with Lyme illuminatta, Dr.  Richard Horowitz, Lymedisease.org’s Dorothy LeLand, support group leader-James Gilbert and “The Hormone Book” author Phulie Cohan.  The cocktail reception, hosted by Igenex labs, was a non-stop ferris wheel of spontaneous, flame-flickers of introduction.  In a matter of minutes I was chatting with Joseph Jemsek, Neil Nathan, Eric Gordon, Jodi Darshore, Joseph Burrascanno, Steve Clark, Lyme patients and advocates.  The names and faces string on like a sparkle of Christmas twinkle lights.  Honestly, I felt bewitched by the magic of union and compassionate dedication we shared.

Saturday was another day of miracles.  Sam Shor’s chronic fatigue talk, Dr. Raxlen’s relapsing borreliosis presentation and Wayne Anderson’s genius “Cog wheel” explanation of whole bodily system breakdown due to Lyme infection were just plain ground breaking.  When you mix in Sam Donta’s understanding antibiotics regarding Lyme treatment, Clongen labs Ahmed Kilani’s latest detection tests and Neil Nathan’s clear communication about neurotoxins in illness, well you feel like you have been rocketed to the moon.  It is all critical and stunning work they are doing.  it makes me feel hopeful.

Though Lyme disease has been essentially ignored by 95% of the medical world, scoffed off with outdated Infectious Disease Society information from the early 1980’s as a short term infectious illness, these medical professionals and the other 500 of us at the conference are dialed into something totally different.  We believe from either having experienced it first hand as a victim or facing it straight on in clinical practice or labs, Lyme disease and associated micro-organism co-infections DO exist in a chronic form.

The palsies, the exhaustion, the grueling bone pains and migraines, the brain fog, fibromyalgia, the panic, depression, OCD, neuropathy, strokes and dementia are not imagined or a fall-out from something else.  Borrelia burgdorferi, a nasty, shape-shifting cyclical living bacteria can reek havoc on multiple systems on the body, and mess with your mind, too.  It loves our joints and soft tissue, gladly burrowing in for a lifetime and generations as a mother can pass it to her fetus.  I met with a woman from India, who identifies, she is a fourth generation Lyme infected person, aware of how it has been threaded through her ancestors in vitro!  The European and Asian doctors there talked of its threats in their country.

Ultimately, borrelia and company (bartonella, babesia, erlichia, etc.) gorge on our amino acids, glucose, vitamin D, minerals and more essentials, spiraling inwards to its’ holy grail-our spinal fluid and brain.  This is where pure havoc and devastation result; with ALS, MS, Parkinson, Alzheimer’s and Tourette’s syndrome next surfacing.

Sunday morning’s final presentations at the conference were all brilliant.  Dr.  Alan MacDonald, a long time Lyme researching physician received a standing ovation, at his heartfelt discourse’s end, as he vowed to prove in his lifetime that Alzheimer’s is caused by borrelia burgdorferi! He has evidenced based research he has been working on for 20 years.

Ginger Savely gave us current guidelines of how to use the CD57 marker test.  The prominent take-home was that it can be skewed by other immunological stimulation agents such as molds and viruses (EBV, CMV), thus making it a tricky test to rely upon steadily as a Lyme improvement barometer, though we wish it could be.

The whole conference flowed beautifully.  The environment and attendees were wonderful, the volunteers helpful and vendors so informative.  Hats off to the remarkable, organized and clever,  Executive director, Barbara Buchman for making this ILADS event so top drawer.

It was a phenomenal moment for me, when speaking to a new friend, that I became aware of the fact that established veteran medical doctors were standing at the homeopathic and herbal medicine booths seriously interested in how these protocols can help heal Lyme disease cases.  Here was my vision of the future before my very eyes and my message I lecture with shining forth!

Lyme disease is the epidemic of our era that asks us to unite the two hands of health care:  the diagnostics and pharmaceutical weaponry of allopathic medicine, with the restorative therapeutics of natural medicine.  Two hands working together are better than one (Katina Makris, 2012).”

By the time I packed up the last few copies of “Out of the Woods,” I was soaring to the sun.  Many people purchased my book, by the way, and famous health care professionals had sought me out, congratulating me in both my healthy recovery and a job truly well done in telling my story.  I feel so inspired by the enormous talent I swam amid for three days and so grateful for the tremendous opportunity I am living.  I made valuable new friends, shared such depth and meaning with others and came home with true hope the the “lyme code” will be cracked in my lifetime, heralding a new, more integrative approach to health care in the USA.  It’s a far cry from 30 years ago.

Meanwhile, it’s onward and upwards for all of us hard workers.  I am invited to speak at the Australian Lyme conference in 2013!  I’ve forged alliances to co-present at a chiropractic training.  Support group leaders from Florida, Connecticut and Texas want me to come speak to their members.  Many of us left with a fistful of business cards, new connections bearing fruits of our intentions.  These are amazing times.

Good news is that you can go to ILADS.com and register to watch most of the lectures presented at this 2012 conference “streaming” on your computer, December 1, 2012.  Do it! You will be enthralled.

Thank you Barbara Buchman, all the presenters, the helpers and vendors, and the concerned people in attendance at ILADS Boston.  This was a spectacular weekend.  A moment in my life I will forever remember.  Up form the ashes I flew, like a phoenix rising to a higher dimension.  Crippled, racked in pain and lost in tepid confusion a mere few years ago, I am awed by the resiliency of my body and spirit to heal, and indebted always to the forces that have enabled me to soar above and beyond the stifling grip of the stealthy micro-organism of Lyme disease.

As always, I offer you blessings for health and happiness,

Katina

Lyme Disease – A Campaign Issue That Lingers

The New York Times contacted me in September to write an Op-Ed piece for them about the chronic Lyme disease situation in the USA, which has been ignored for so long, and actually decried by medical groups and most recently by the media and renowned newspapers, such as Slate and The Washington Post, who brushed off this life altering infection as a “quack illness!”

Sadly, The New York Times ended up not running my piece, due to the accelerated presidential campaign news, becoming so central.  However, I still have my powerful Op-Ed, and share it here now.  I would love to see it make its way into a major publication or of course more blog sites.  Please pass it along to all people and places you feel it will resonate with.

Thank you for supporting my work and efforts to illuminate the tragedies of this very REAL epidemic.

Lyme Disease – A Campaign Issue That Lingers
Katina I.Makris, CCH, CIH

While campaigning in Virginia Romney/Ryan were lambasted by reputable publications for their efforts promising to thwart Lyme disease, a growing epidemic, decried as a “ quack illness” by the uninformed.  Yet, people are concerned for contagion in their own neighborhoods.

Since it was first recognized in 1975, this tick-borne illness has been highly politicized and contentious; wide-ranging symptoms making it difficult to  diagnose and treat, earning Lyme ‘The Great Imitator’ moniker. The CDC and the Infectious Disease Society of America recognize acute Lyme- the achey, flu-like symptoms occurring right after a tick bite, but deny Lyme manifests as a chronic illness.

I’ve seen the devastating effects of chronic Lyme countless times, and have lived through it myself.  On a June night in Massachusetts, a standing room only crowd; newspaper reporters, doctors, board of health members converge, stricken citizens voice their messages:

“ My health has deteriorated for 15 years, with apparent fibromyalgia, Bells palsy and dementia. Only last year did lab work prove I have had lyme all along,” an infuriated woman conveys. A single mom’s 9 year old son has been paralyzed. She says, “Famous hospitals had no answers. Fortunately, a savvy physician recognized the neurological form of Lyme and 9 months later on IV antibiotics, he is able to ride a bike again.”These are real people, with a real disease, who need real help. Lyme is not the ‘’illness du jour’.

The Lyme-causing bacteria, Borrelia burgdorferi, is cork-screw spirochete, akin to syphilis. If not treated promptly, the spirochete disseminates throughout the body, burrowing into soft tissues, joints, the nervous system and organs, triggering auto-immune responses and inflammation, resulting in diverse symptoms from vertigo to palsy to mental illness. Authorities agree that acute Lyme is arrested with simple, ample antibiotics, while long term forms brew a sea of controversy, as a documented consistent cure is nonexistent.

With commercial Lyme lab tests exhibiting a 65% false negative error rate, finding Lyme knowledgable doctors, who know to use one of the USA’s diagnostic specialty labs is difficult. Certain states have stripped physician’s licenses for long term antibiotic use, despite clinical evidence of success.  On the other side of the fence, thousands of patients do not adequately regain their health, even after years of expensive multi-pharmaceutical combinations.  These tragedies only underscore the necessity of more timely research and treatments options.

Most doctors are unaware Lyme exists outside of New England. But ticks, the prime vector for Lyme, are found everywhere in the U.S, having spread as a result of global warming and migratory bird patterns.

A woman from Tennessee told me she removed 14 ticks from her husband, 5 with bulls-eye rashes, after clearing brush. Their physician said “This isn’t Lyme disease, we don’t have that illness here. It is only found on Cape Cod.” Her husband went on to suffer crippling migraines, joint pain, and depression and can no longer work. But, as the world warms and different infected tick species move comfortably into new habitats, we should be especially alert.
In 2011, 35,198 new Lyme cases were reported by the CDC, representing a 40% increase from 2006.  Additionally, the CDC acknowledges that the true number of Lyme cases is probably ten times higher, translating to an estimated 3,000,000 Americans shuffling through our health care system in various states of misdiagnosed illness over the past ten years alone. (Klempner et al. 2001). Mismanaged Lyme disease is over burdening the medical community, the insurance industry and wrecking lives.

Renowned Lyme specialist, Alan MacDonald’s 1980s studies proved that 70% of Alzheimer patients tested positive for the Lyme-causing spirochete, and that Lyme could cross the placental barrier, affecting the fetus.  Yet, a 100% accurate borrelia culture test and more private research into this area could not get governmental financial backing. The position of the IDSA remained unchanged: Lyme disease was a short term infectious illness and any patient complaints made after the brief antibiotic treatment were non related or a ‘’post syndrome’. (Burrascano 2012)

Western society experiences a massive life-altering epidemic—HIV, polio, tuberculosis—approximately every 30 years. HIV exploded into our lives in the 1980‘s, when Lyme was still an unsuspected acute illness. Covertly, Lyme pirated its way into our backyards, as who ever saw the pin sized deer tick nymphs creeping across their back or scalp?  Are we sitting in the crosshairs of the potential epidemic of the 21st century having ignored its ugly saber strikes? Tick borne organisms could be the lock and key ingredient to many of mankind’s chronic ills.
Having lived in heavily infested Massachusetts, Romney maybe more Lyme aware.  Partisan rhetoric and media slant shouldn’t obfuscate basic medical funding for a disease that does not discriminate against any American; age, economic status or political party included.  ILAD’S president Dr. Leo Shea sums up the situation, “ We witnessed HIV be disregarded by medical authorities as thousands died.  We cannot afford to let Lyme destroy another generation.”

Katina I. Makris, CCH, CIH is the author of “” Out of the Woods, Healing Lyme Disease, Body, Mind & Spirit”, Elite Books, 2011.

Katina.makris@comcast.net

Katinamakris.com

Vote for Katina as 50 Top Authors, 2012

Dear Friends,

Would you be kind enough to give me your vote in this author’s contest below?

Vote Here!

There is a brief essay of mine to read if you like, don’t feel obligated to, especially if you already read “Out of the Woods!”

Thanks for your vote and let’s hope I make top 50!

Cheers!

Katina

International Lyme and Associated Disease Society Conference

I am delighted to be attending the exciting and educational ILADS conference in Boston, on November 2-4.

ILADS, Boston, MA

This is the foremost event of each year, uniting the best minds in Lyme disease research, lab work, doctoring, advocacy and philosophy.

To be strong enough to attend after years of Lyme collapse, with “Out of the Woods” proudly placed at the conference author table-I am elated!  Send me stamina and I will fill you all in when back home.

 

Katina Speaks at Nashua Health and Wellness Fair

Wednesday, October 24, Nashua Community College, Nashua, New Hampshire hosts a Health Fair, with a vast array of booths, speakers and demonstrations available.  Please come — tell your friends.  I will be presenting on Lyme disease at 5 PM.  This is my last speaking appearance of 2012, as well as a book signing with “Out of the Woods” at the Lyme disease resource table.

I am delighted to share with you!

Nashua Health and Wellness Fair

Last Leg of Lyme Disease Book Tour

I launched “Out of the Woods; Healing Lyme Disease, Body, Mind and Spirit”  on October 1, 2011.  A full year has flown by and I haven’t worked this hard since I was in my 30s!!

My book tour events have been fabulous.  These are my last two stops in 2012.

Last Events for 2012!

Please come join me or send your friends.  Lecturing about Lyme disease diagnostics, prevention and treatment is invaluable.

Plus, we have a great time together!

Rhode Island, You Rock!

As you followers have found, my summer has been chock full of Lyme disease talks, healing workshops, book events and media.  Somehow, I’ve managed to keep up with an athletic 15 year old son and seeing clients, though limitedly.

I have to say the summer finale on the book tour in Rhode Island was truly spectacular!! What an outpouring of attention, gatherings and momentum I experienced.  I am completely impressed with the active Lyme support groups in the region, as well alert concern by people in important roles.  Lyme literate practitioners exist in our tiny “ocean state.”  Let me share some of the trip.

I’ve harbored a fondness for Rhode Island’s soft sandy beaches and warm ocean waters over the past decades, as most of New England has icy, cold water, too brisk to swim in for long.  As an avid swimmer I favor their lovely beaches and fell in love with romantic Watch Hill and of course gilded Newport long ago.  Their historied charm and stunning waterfronts are just magical.  The rest of the state has been mostly a “drive through” experience for me.

I’d learned awhile ago, however, that like Long Island, Connecticut, Cape Cod and the outer islands, Rhode Island is Lyme infested and over populated by ticks.  Their level of illness has run rampant.

A heartfelt thanks to Barbara Smith, Jane Barrows, Irene Weaver and Cynthia Leonard who made my appearances work so flawlessly.

Sunday, September 9, Westport Grange, actually in neighboring MA, hosted me with a rousing crowd of 85+.  The South Shore Lyme Support Group is holding many lives together, suicidal feelings knocking on too many hearts.  This picturesque township, layered with farmland, stone walls, and ocean beach grass is tick nirvana.  We had many seriously afflicted attendees.  Cable TV taped my two hour presentation and what a wonderful time we shared, as I introduced a powerful healing intention prayer for us all.  You are wonderful souls.

Monday, September 10, Barbara whisked me off to WJAR, NBC TV, Providence, Rhode

Katina at NBC

Island.  Barbara Morse Silva, a Lyme literate health editor and weekend anchor was eager to give attention to my Lyme recovery story in “Out of the Woods,”  helping us gain more exposure with the epidemic.  Though she spent a solid 15 minutes taping with me, the spot of course was a succinct two minutes, But, WJAR and Barbara were gracious and caring.  Thank you!

12 noon.  Marriott Hotel, Rotary Club luncheon.  I was the guest speaker.  One hundred fifty rotarians listened attentively to Lyme’s destructive forces.  A great audience, and some families with tragically ill members were there. Cynthia Leonard is the go-to gal at Providence Rotary for Lyme info.  They host several Lyme awareness events annually.  That is terrific!

6 PM.  St.  Mark’s Catholic  Church, Jamestown Rhode Island.  Delightful Irene Weaver, seasoned Lyme vet Jane Barrows, and charming Father O’Neil hosted this event.  Close to 100 folks came out and guess what…a first for me-I spoke from the pulpit!

Cythia and Katina

This was a stunning moment for me to recognize how very far in my healing journey I’d traveled.  Seven years ago I was so sick, too weak to stand unassisted, emotionally, physically and spiritually decimated.  Death knocked on my door. It was a battle that summer to remain alive.  And here I was now, a completely renewed, healed and vibrant being, standing strong and proud, bright and smiling, sharing my hard earned wisdom on the pulpit of a beautiful, grand and welcoming church.  My message cannot ring out more clearly~ mending the spirit is just as essential as mending the body.

If I had not spent the solid three years doing the inner spiritual healing work, I do not believe I would have attained as complete recovery from advanced chronic Lyme disease as I have.  Standing on that pulpit at St. Mark’s I felt the recognition from divinity- “You have earned your stripes, Katina.  You are welcomed as a healing messenger, with higher knowledge.”

These words washed through me in the brief moments standing by the heavy velvet throne-like chair at the altar.  Not a regular church goer by any means, though raised as a Greek Orthodox and Quaker mix (odd I know), as a spiritual being, I know when I am being “summoned!”  Thank you God, angelic beings, spirit guides for bringing me far on this journey.  I am open, I am listening and always, always I appreciate your guidance.

The evening was ripe with emotional Q&A, as so many have suffered for so long.  Help is needed here and everywhere, as we know, for better Lyme organism diagnostics, more experienced  practitioners and resources.  Newport Lyme Support Group leader, Jane Barrows, is loaded with knowledge and contacts.  What a fantastic group at St. Mark’s-MD’s, homeopaths, psychotherapists, nurses, herbalists, patients, and caretakers we were.

Thank you Westport, Providence, Newport, and Jamestown for welcoming me and my

Katina and Lane Poor

efforts to being guidance and inspiration to your communities.  Healing from chronic Lyme is hard work, requires a long time and an integrative medical approach, as well as spiritual recovery.  I am blessed by the compassion and openness of our ever expanding Lyme disease community.  This is a wondrous opportunity I am living.

Up from the ashes, you could say.

Meanwhile, I love Rhode Island more than ever, and may your gutsy attitude about this epidemic propel the momentum to bring about some real change-like a Lyme hospital such as Inanna House!  I sense you may share the right collective forces to just make such a thing happen

With Blessings,

Katina