Lyme, Depression, and Dancing

Here I am again, the queen of fits and starts. We’re actually doing pretty well, but we still suffer from the constant effects of fighting lyme, catching up, diving into work, and starting the cycle again. Except…the sick cycles for our family of lyme fighters seem to be ebbing more than flowing. And for that I am profoundly grateful.


This one has been churning for a while, and though we’re a month removed from the actual Mental Health Awareness Month, it’s important no matter what month it is to be able to talk about not being okay. And most Lyme warriors will tell you they spend a LOT of time not being okay.  First of all, if you missed Jim’s update, start there because it provides the context for this post.

In our own family, with three of the six of us having Lyme disease, it’s probably safe to say that we’ve all spent quite a lot of time not being okay. Even those among us without Lyme have struggled mightily because the ripple effects of fighting Lyme continue like waves for years. Everyone in our “core” family has suffered from some type of lyme-related trauma or even PTSD. Whether it’s caregiving fatigue, or feeling the financial effects of lyme-related treatment, we’ve all suffered from some type of shell-shock.

It is estimated that 20% of lyme fighters battle depression, with both biological and situational roots. The other reality of Lyme disease is that suicide rates are drastically under-reported, and with suicidal ideation a terrifying fact of life for many people with depression, the possible, and even probable, statistics are staggering. Consider the following:

  • The CDC is only able to officially report 30,000 cases of Lyme each year because they have to rely on other agencies reporting local cases. Two recent studies published by the CDC estimate that the number is drastically higher, hovering around 350,000 NEW cases of Lyme each year.
  • The NIH reports an even more appalling number, estimating that there will be at least 1 MILLION new cases of Lyme disease  in the United Stages in 2018, and over 2 million new cases in Europe. One NIH estimate is absolutely chilling, citing that   “In the USA by 2050, 55.7 million people (12% of the population) will have been infected with Lyme disease.”
  • The most recent research suggests that AT LEAST 20 % of lyme fighters have depression, but even the authors of the study acknowledge the probable inaccuracy of those numbers.

What this means, if you take time to digest it,  is that at least 20% of the 350,000 individuals with Lyme disease are depressed, resulting in 60,000 cases of Lyme-related depression each year. If you consider NIH’s prediction of 1 million new diagnoses, that translates to 200,000 people suffering from Lyme-related depression this year alone. And all of this is absolutely ATROCIOUS, because if Lyme is under-reported and depression is under-reported, we are left with staggering numbers of people suffering because of an enemy the size of a grain of sand, and a disease that is completely under funded.

lamottLyme is insidious, and most of the people wading through it are unable to take the time to write a blog about how depressed they are because they are most likely trying to survive, financially and physically. We need better testing, more funding, better advocacy, and more lyme fighters willing to talk about how they navigated the mental health aspects of Lyme. We also need lyme fighters willing to brave the stigma that comes from talking about depression. 

Lyme disease is the fastest growing vector-borne disease in the country, yet funding lags WAY behind the funding for the Zika virus. Below is a table detailing the funding allocated by the NIH for different vector-borne diseases:


I will address how we as a family found our way through the maze that is lyme-related depression, but as we’ve said again and again, it’s not linear, and having depression caused by an infection needs to be addressed in a different, even more comprehensive (and, yes, expensive) way. But if you take anything away from this, it’s our reassurance that there IS a way through it. And it feels really good to finally be okay.

My advice to lyme fighters struggling with depression would be to, first of all, find someone to talk to. Depression dulls our cognitive abilities and makes prioritizing and decision-making even harder, so a qualified therapist can help you triage and navigate treatment and recovery. I would then suggest you devote some time researching how to treat lyme-related depression by treating the infection AND the depression. (But do so carefully, and under the supervision of a qualified practitioner. Read about our experience with helpful genetic testing in this post.) And finally, tell someone you aren’t okay. This road is too hard to go alone.


When in doubt, try giving in to the groove.

God bless you all good.

Lyme and Depression Links



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