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

13 thoughts on “News From the International Lyme and Associated Disease Conference

  1. Katina thank you so much for these wonderful reflections and details! COngratulations on the Australia invite too, and all of the other well deserved acknowledgements you received there! Brava! What fun to read. I am looking fwd to the release of streaming videos!! Did Dr Sherr make it there? Did you see her?

    1. didnt meet Dr Sherr, missed tons of folks I wanted to meet. There were so many of us and it was just all in motion and happening at once! Was fantastic time tho!! I loved every moment and wanted to stay there forever, in the embrace of such genius and healing.
      K

  2. Katina, I was also at that conference & my husband purchased your book (you autographed it for the “both”of us – thank you!)….It was my first ILADS conference, and I am a health care provider (NP) who aspires to open her own LLNP practice…I live in NH too!

    I felt so honored to be there among the “greatest of knowledge” on Lyme! I was awed, as you were, by the research, and the intelligence that was presented in those rooms! I couldn’t decide WHERE to go either! I was trying to go from lecture to lecture – my Lyme knees made that hard…

    I am so glad you were asked to speak at the Australian invite! that is great! And I am reading your book! 🙂 it has been great so far…

    1. Hi Marie and Dorris!!!
      Such a fantastic conference wasnt it??? I wanted it to last forever, and ever. I too cant wait for the streaming. Yes, your hubby was dear and I am happy to hear you will specialize in lyme, as you recover, so desperately needed!!!!!
      Fingers crossed on Australia!! WOW!
      Enjoy OUT OF THE WOODS, it is a gem of hope.
      Best,
      Katina

  3. What a wonderful report, so so happy for you! Reading this gave me chills! You are indeed in the right place, and at the right time. I am grateful to count you as one of my friends and, most importantly, as one of my healers.

    1. Thank you Carol. It was a powerful weekend. I am honored to be one of you healers. Keep up your great attitude and hard work.
      Katina

  4. Thank you so much for sharing your experience with us! It is so very encouraging! I so wish that I could have been there to soak it all in. Congratulations on your future engagements! You are so inspiring to all of us.

  5. Wonderful description of the conference. I have found that the 5% that recognizes chronic LD are caring & compassionate. I thought Dr. MacDonald had dementia so I am glad to see that he is back.

  6. Thanks so much for your passion and commitment. So sorry it was born in such suffering. I’m wondering if yoga — therapeutic, restorative, gentle or even hot yoga — was discussed at the conference. I know it can bring some ease, some hope and empowerment, I’m just wondering if that word is seeping into the community. thanks for this beautiful website and for writing!

  7. no real talk of yoga at ILADS conf. I know us attendees mentioned it to each other but not in the big talks. I do BELIEVE it is a very big help tho w Lyme and all auto-immune style illness. Thank you for your kind words—- I am devoted to helping end the chaos of this illness. Blessings. KM

  8. thanks for your quick reply Katina! perhaps a yoga presentation could be encouraged at the next ILADs. I’ve finally talked my studio into allowing me to offer a Yoga for Lyme and Chronic Lyme workshop in Jan., although they weren’t convinced enough people would be interested. If you want to spread the word, or to talk about what I have found beneficial in working with Lyme folks, I’d be happy to be in touch. I’m in nyc. Wishing you continued success ….

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