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.

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:

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:

• Just because you tested negative for Lyme disease – does not mean you don’t have it!
• See an LLMD (Lyme Literate Doctor) if you have symptoms that are not explained by other physicians and you suspect a vector borne illness.
• Educate yourself on your illness and ask your physician direct questions about your specific concern.

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-Dr. Elena Frid