It typically takes Lyme patients years to get a diagnosis. It also takes a lot of detective work.
In this post for the Global Lyme Alliance blog, I share a little of my story and how I was passed from doctor to doctor for almost two years before I got a diagnosis. I also give some tips on how to be a health detective in your own journey back to health.
You can read the full post here:
How to Be Your Own Health Detective
How did you eventually find your diagnosis? What were the clues that led you to it?
"You learn you can do your best even when it's hard, even when you're tired and maybe hurting a little bit." - Joe Namath
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
Sharing our story is one of the most important things we can do to spread awareness of Lyme disease.
For my most recent article on the Global Lyme Alliance blog I asked four wonderful Lyme bloggers to weigh in on the question, "What is it like to have an illness no one believes in?"
Christina of Lady of Lyme, Kami of Living Grace, Victoria of Lemons 'N Lyme, and April of Happy Healin' Vegan, all had interesting and heartfelt responses to this question.
You can read the full article here:
What It's Like to Have an Illness No One Believes In
If you're reading this blog you may have Lyme or love someone who has Lyme. What's it like for you to have an illness no one believes in? Leave a comment and spread awareness.
"As long as I’m alive, I will continue to try to understand more because the work of the heart is never done." - Muhammad Ali
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.