On March 9th, 2017 the Global Lyme Alliance hosted an Evening of Art and Education in Chicago. It was the the first GLA event held outside of New England. The Event took place at the Matthew Rachman Gallery and featured two Lyme doctors, Dr. Casey Kelley from Whole Health Chicago and Dr. Christopher Janson.
The evening began with a social hour with drinks and gluten-free appetizers. I brought my husband, so he could meet people in the Lyme community and learn some new information.
During the social hour we met Kasey, a Chicago area Lyme fighter, who reached out the GLA to bring the event to Chicago, and did much of the planning. We also talked to a newly diagnosed patient, just starting out on the long road to healing. There was an electric energy in the room of camaraderie and understanding.
I was delighted to meet the CEO of the GLA, Scott Santarella, and introduce myself as a contributor to the GLA blog.
After the social hour Scott and Kasey talked about the GLA mission and the importance of bringing events to the midwest. I was touched when Scott said, "There is no other disease in the world where the patients are treated so unjustly."
Then, they introduced the doctors: Dr. Christopher Jason is a neurologist, who works does research and works out of the University of Illinois at Chicago. His current research on the blood brain barrier is funded by the GLA. Dr. Casey Kelley is a functional medicine doctor at Whole Health Chicago.
The doctors gave brief explanations of their areas of expertise and then answered questions from the attendees. People in the group had excellent questions about testing, symptoms, depression and Lyme, and many other important topics.
Dr. Kelley talked about how in Lyme treatment there are, "Different paths up the mountain," and that everyone responds differently. She also commented that a major part of Lyme treatment is "cleaning up the mess, so the body can rebuild on its own," and said, "remission is possible."
It was a lovely evening and I enjoyed the atmosphere. I came away hopeful, but as with anything related to Lyme, also frustrated and confused about why recognition and funding continues to be an uphill battle.
Here's a picture from the end of the evening with fellow Lyme fighter and friend, Jenny:
I want to thank the GLA for bringing the event to Chicago and I look forward to future events.
"Life is precious and time is a key element. Let's make every moment count and help those who have a greater need than our own." - Harmon Killebrew
One reason people get tattoos is to commemorate an important experience. When I was struggling to get a diagnosis and at rock bottom, I promised myself I would get a tattoo when I finally found the answer. I wanted the tattoo to represent the fact that I never, ever gave up, even when it seemed like I might not get better.
As it turned out the diagnosis was only the beginning. Through the process I learned a lot about myself and felt my purpose shifting. A health professional I follow on Facebook posted this quote from Thich Nhat Hanh:
The phrase, "no mud, no lotus" rang true true for me. There are so many beautiful things that have grown out of this illness: I have found medical professionals that I trust, I have met tons of amazing people, both in person and online, I started my writing career, I started eating nutritious foods, I made meditation and yoga a priority, and I completely, re-framed my outlook on life. The biggest thing was it gave me the bravery to leave my job.
Oprah says when the universe wants to tell you something it starts with a whisper. My whisper started 10 years ago and kept getting louder and louder. Getting sick was the universe screaming at me, "You're going the wrong way." Without this illness I never would've found my way back to my true path.
So, one day I was scrolling through my Twitter feed, and I came upon a tweet about the Lyme Warrior campaign Ink to End Lyme. (You can read my interview with Lyme Warrior President and Founder Lauren Lovejoy here)
It was the excuse I was waiting for to get my next tattoo. On the Ink to End Lyme campaign page I found out there is a tattoo artist in Chicago who also has Lyme and was participating in the event.
I contacted Kyle Adani at Revolution Tattoo and asked if he would do my tattoo. He graciously accepted and designed a beautiful lotus flower tattoo.
Here he is at work. Doesn't hurt a bit:
And here is the finished product:
It was such a special experience to get a tattoo about my Lyme journey done by another Lyme warrior. We talked about our shared experience, as all Lyme patients tend to do when we meet, and it resulted in a very meaningful piece of art.
Tattoos aren't for everyone, but many Lyme patients feel compelled to document their experience. It's not my first and it won't be my last; it marks another chapter in this long and beautiful journey.
"The lotus flower blooms most beautifully from the deepest and thickest mud." - Buddhist Proverb
Dr. Elena Frid is a board certified Neurologist, who treats vector borne illness and autoimmunity in New York, New York. If you have Lyme you have probably heard of her, because she is a strong Lyme advocate, spreading information to various publications and online. On her website it says "Through social media, medical publications, and community "call to action" speaking engagements, Dr. Elena Frid has committed her time to bring awareness to medical colleagues, patients and families across the united States." This article was originally published in Dr. Frid's Newsletter and she has given me permission to publish it here:
Interpreting Lyme Test - Not So Easy
I have been writing to you about my involvement with Lyme disease and other tick borne illnesses for over six months. Through the letters one can see the vast involvement and damage these disorders can cause and can present in many different ways often mimicking other conditions. In my practice, I primarily see patients who have been undiagnosed for months or even years, often not receiving any treatment or not being treated appropriately.
Part of the frustration in the Lyme community is the fact that there is no one good test that is accurate. The test that we have now is up to 50-70% inaccurate in some instances. In turn, if you test negative for Lyme disease on regular blood work – it doesn't mean you don’t have Lyme. In fact, recently the state of Maryland signed a bill into law that requires health care providers warn patients in writing that Lyme disease testing can be problematic and standard laboratory tests often result in false negative and false positive results.
So what do we do? Well, my suggestion is educating yourself which is the reason for this newsletter.
When a Lyme test is ordered through a regular lab, it goes through a two tier approach: ELISA and Western Blot - WB (3 IgM Antibodies and 10 IgG Antibodies) screening test. When the ELISA test comes back positive, only then a Western Blot test will be run, which tests for specific antibodies for Lyme disease. If you tested for ELISA and 2 out of 3 IgM Antibodies came back positive on WB, you are positive for Lyme, or positive for ELISA AND 5 out of 10 IgG Antibodies positive on WB = you have Lyme.
The issue: a patient may falsely test negative for ELISA and so the bands will never be run/reported, or patients may test positive for a number of bands but not enough to meet the CDC/IDSA guidelines delineated above.
Another important point is that not all WB IgM and IgG bands are created equal. If you speak to Lyme Literate Doctors (LLMD) they will tell you that some bands are more or less specific for Lyme disease. Therefore, many LLMDs look at quality of the bands not quantity in conjunction with assessing the clinical picture including physical findings. Bands that are considered to be Lyme specific according to the International Lyme And Associated Diseases Society = ILADS guidelines: 18, 23, 30, 31, 34, 39, 93.
Please note that some LLMDs also advocate the use of specialty laboratories to test for Lyme and associate diseases which many report is a more accurate way of looking for serologic evidence of exposure to tick borne illnesses.
Take away points:
-Dr. Elena Frid
Thank you Dr. Frid for sharing this important information. Education is our best line of defense. She has asked that if you have a specific topic you would like to hear from her about to please leave a comment and she may write an article to address it. Visit Dr. Frid's website here. You can also follow her on Facebook, Twitter, Instagram, and YouTube.
"Sometimes courage is the quiet voice at the end of the day saying 'I will try again tomorrow.'" - Mary Anne Radmacher
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.