by Fred Diamond

When I was researching information for my book “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know,” I wanted to learn how stress can flare Lyme symptoms, and what Lyme survivors could do to minimize their stress levels.

Many of the hundreds of Lyme survivors I engaged with had told me that they were trying to reduce the stress in their lives.

Dr. Diane Mueller recently published the second edition of her book “It’s Not in Your Head.”

On this week’s “Love, Hope, Lyme” podcast, we discussed how stress impacts Lyme disease and strategies Lyme survivors could take to manage it.

Stressors, big and small, commonly spur debilitating flares, and can happen at any time, often without any warning.

“With Lyme, it’s almost like chickenpox, where it’s in remission. We have dormant persister cells that are laying just below the surface, likely in our nerves and joint spaces, since those are two common areas that we tend to see Lyme. If we’re not getting overly stressed, they stay in remission,” she said.

It all starts in the brain

Many Lyme survivors struggle with brain fog, which can be very stressful.

“It’s tricky, because there’s not a medical diagnosis for brain fog. The closest thing we have is mild cognitive impairment, which is like, oh, we don’t have dementia, but the brain is not working as well as it could be,” she said.

“Mold toxins and toxic metals are also contributing to that inflammatory process in the brain, because brain fog really is the brain being inflamed.

“Especially in the early onset standpoint of Lyme, we see cortisol, that stress hormone, rise,” she said. “Cortisol typically will fall for most people, but when that cortisol rises, it can negatively impact the hippocampus, the memory center of our brain. That can contribute to the brain fog, that is related to dilemmas such as, “What did I come into the room for, or where did I park my car?”

Dr. Mueller said, “There’s bad stress and good stress. Good stress oftentimes is called eustress. An example of good stress is exercise, which is technically a stress on the body, but then the body recovers and is stronger.”

Long-term stressors in Lyme disease

From a Lyme disease perspective, what we’re really looking to do from a stress standpoint is keep ourselves regulated from longer-term stressors.

“The stress that I’m concerned about is when the brain starts to get dysregulated because we’ve been under stress for so long and we’re not adapting to it. When that happens, the brain loses its capacity to properly see how much cortisol, which is our stress hormone, is in the blood,” she said.

“When our brain loses our ability to see that, then one of two things happens. It either thinks the cortisol’s too low or it’s thinking our cortisol is too high and it’s not, and then our cortisol crashes. Either one of those things causes problems.

“What we see also is dysregulated cortisol can contribute to immune dysfunction. One of the big relationships we see with stress and Lyme is this imbalance because of this dysfunction, and then suddenly, our immune system is not working properly, the signals are not getting sent out. That’s where we get that resurgence of Lyme disease,” she said.

“No human can eliminate stress in our lives. The question is how we work with this stress, so it doesn’t become this dysfunctional brain pattern.”

Stressor response

Dr. Mueller is also a chronic Lyme survivor who has had to learn how to deal with traumatic responses to stressors. She said this helps her relate to what Lyme survivors go through.

“I thought about moving to a deserted island because I was dying and that sounded like the best way to go out. I’ve seen other people say they could not work or that they had to leave their partner,” she said.

“These types of fight, flight, freeze actions are normal responses, and is what happens when the body goes into a stressful scenario. Your body is doing a very normal thing when a stressor occurs,” she said.

She said these types of scenarios are typically run by hormones such as adrenaline and the problem is when we are in these types of stressful situations and the hormones that take over are not proactively helping the body treat the disease.

“The vicious cycle we get into in this is when we feel those things, we secrete all that adrenaline, then we’re sending signals to our body to say, ‘break down tissue, not heal, not repair.’

“When we do that, the Lyme and the infections and the symptoms can get worse. Then we just get stuck in this vicious chicken and the egg, where the adrenaline in the mind is worsening the symptoms, and the symptoms are worsening the adrenaline in the mind,” she said.

Getting to the root cause

To solve the stress problem, she said we need to get to the root cause of what’s challenging the Lyme survivor, which in some cases can be deeper than the Lyme and even the co-infections.

“I’ve seen many patients who have seen dozens of different doctors, and their problems are not being solved because Lyme disease is only one of the root causes. Yes, we want to address Lyme, but we can get really lost with the root when it’s other things. I’m talking about roots beyond the Lyme and the co-infections,” she said.

“For instance, the exposure to mold is triggering of that recurrence of Lyme. Maybe the first time they had Lyme, they just had flu symptoms,” she said. “Then they move into a moldy place and get chronic Lyme symptoms. It gets diagnosed as Lyme, and they don’t realize that their home is causing it.”

She said this root-cause analysis can help the Lyme survivor truly understand what they are truly facing and then put a treatment plan in place that will be more effective. This can reduce much of the stress they are dealing with.

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, Virginia and can be contacted via Facebook. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version of the book is always free to Lyme survivors. PM Fred on Facebook for your copy.