Category Archives: Lyme and the Brain

Video: “Lyme Is Hell”

This powerful public service ad comes from the Netherlands. This English version was just released for World Lyme Day 2016. (View the Dutch version here.)It’s going viral.

The last bit may surprise you. Or…may not, if you are living with this illness.

May is Lyme Awareness Month. Please promote understanding of Lyme Disease: Please share.

And protect yourself from this hell. Read these top ten prevention tips from ILADS (International Lyme and Associated Diseases Society).

Portrait of a Love Triangle

Made by Courtney, age 2.

Made by Courtney, age 2.

 

 

 

I lost a relationship to Lyme. As I’ve learned since, Lyme has ruined many relationships and marriages.

The year we met was wonderful. He was smart, funny, sweet, and kind. Best of all, he said “yes” to everything, from new foods to foreign films to travel. He taught me about sailing; I shared my love of cycling. Over a couple of years we grew close.

Then came the beginning of the end of us. When he won tickets to Paris and we arrived full of plans to explore La Ville Lumière, suddenly I was so tired that I didn’t couldn’t keep up. My customary joi de vivre was flagging along with my body. We thought it was jet lag or flu.  Continue reading

10 Things I Wish I’d Known About Lyme Disease

IV treatment. Pills. More pills. I can't believe I made it through all that. When it could have been avoided...

That’s the little portable pump for my IV drugs. Then there were the pills. More pills. Harsh meds that made me sicker so I could get better. I can’t believe I made it through all that. When it could have been avoided…

 

 

It’s 2016, and I’m finally climbing out of the Lyme hell I fell into blindly four-and-a-half years ago. If only I’d known more, sooner.

Maybe I can help someone, somewhere, by offering a few things I was shocked to learn. Frankly, it is damned hard to pick just 10 things. But here goes:  Continue reading

Video: “The Biology of Lyme: An Expert’s Perspective”

Meet Dr. Alan MacDonald. Okay, so he’s a little wonky when he goes into the scientific details—he’s a pathologist. But remember, those details speak to his credibility. And in this July 2013 YouTube video, he serves up some excellent big-picture explanations that we can all understand.

You might be surprised by some of the details he offers in a variety of areas, including these (keep your cursor on the bottom of the screen to keep minutes visible and zoom to these highlights):

  • what we can learn from syphilis as it relates to its “cousin” Lyme (4:00)
  • how Lyme infects just about any part of the human body (6:15)
  • what MacDonald found when studying the brains of people who had dementia (8:19)
  • how the current U.S. Lyme test is based on only one strain, although there are at least 100 known here—and more in Europe (8:28)

The ongoing work of dedicated researchers like Dr. MacDonald is critical to filling the holes in current knowledge about Lyme disease.

Continue reading

Video: Controversy Over Lyme in Australia

It’s not just places in the U.S. where people are told, “No lyme here.”

In this video posted on YouTube from Australia’s “Today Tonight” (aired 13 February 2012), a government health official says people with lyme in Australia most likely got infected elsewhere.

Patients interviewed say otherwise.

Note: For those not familiar with lyme at its worst, I must warn you that the interviews are graphic examples of the suffering inflicted by persistent lyme disease.

See another “Today Tonight” lyme report about a 3-year-old infected with lyme here.

And here’s research on coinfections in Australia. 

For more information on lyme down under, visit the Lyme Disease Association of Australia. 

 

Where’s the Anxiety Coming From? A Surprising Answer.

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Photo: LifeLoveLyme

This morning when I woke up, I realized that I actually felt refreshed.

I had not endured a night of constant shifting trying to relieve body pain. Or of bolting up eyes wide open at one a.m. and then finding myself stuck awake with raging insomnia for four or five hours. And the thing that struck me most this morning was, I felt at peace.

Lyme disease can affect every part of your body, but many people don’t realize how hard it can hit the brain. For me, one of the biggest symptoms has been crushing anxiety.

I wasn’t particularly surprised; when you’re in constant pain, can’t work, can’t dress or cook or do your own grocery shopping, you lose your sense of self and the worrying escalates. Will I ever feel ok again? Will I ever do the things I used to do, will I be able to work? How am I going to survive financially?

My worrying became debilitating, full-blown anxiety. A therapist helped me deal with it, and medication took the edge off on many tough days.

Here’s a surprise: I had no idea that that the anxiety I struggled with isn’t just triggered by the stress of this chronic illness, but by actual physiological changes in the brain kicked off by Lyme and co-infections.

Continue reading

My Brain on Lyme

Lame brain, Jello brain... lyme brain. Credit: skpy's Flickr stream

Lame brain, Jello brain… Lyme brain.
Credit: skpy’s Flickr stream

There was a time when I thought Lyme disease meant a fever with other flu-like symptoms and a bull’s-eye rash lasting maybe a few weeks. Even when I read that these infections can cause problems with cognition, I didn’t really get it.

Early on as my mind faltered, I thought, “Damn, it’s really happening, I’m getting older and my brain just isn’t working like it used to.” Then I figured, “Wow, the pain and fatigue from this illness are really affecting my ability to think.”

My teenaged son would look at me like I was crazy when I’d forget something we were supposed to do together. I took him to the dentist on the wrong day, even though I looked at the appointment right there on the kitchen calendar a dozen times. On some days, my brain just could not take in information correctly.

I’d blank out on the names of long-time colleagues, or struggle to put together copy for an assignment that should have been easy after many years of writing professionally.

I’d turned 50. I thought the trouble was aging. Turns out it was my brain on Lyme. Continue reading