Lyme Disease and Alzheimer’s
Shedding light on the connection between Lyme Disease and Alzheimer’s:
It didn’t make any sense when my 61-year-old husband, Russ, was diagnosed with early-onset Alzheimer’s. He had no genetic predisposition, no comorbidities, and was the picture of health—except, of course, the systematic devastation that was occurring in his brain. I begged neurologists for an explanation, but all I got was “he has Alzheimer’s.” Period. End of sentence. Actually, death sentence.
Fast forward almost a year later to a conversation with my brother, who is a doctor. His wife was diagnosed with Borreliosis, otherwise known as Lyme disease. She also suffered from three co-infections commonly associated with Lyme. My brother was knee-deep in research trying to help her and became convinced that Lyme was also the root of Russ’s decline. At first, I resisted. Lyme was my first thought, and we had him tested—he was negative. But my brother is smart and persistent. He explained how poor Lyme tests were and convinced me to get him retested at a specialty lab. Sure enough, he was right.
Over the next few years, I researched. I’m an engineer, and putting everything in its place is kind of my thing. The more I dug, the more I discovered there was a lot of cross-over between the early symptoms of Alzheimer’s and neurological Lyme.
Cross-over between the early symptoms of Alzheimer’s and neurological Lyme:
● Changes in mood and personality
● Depression and/or anxiety
● Withdrawal from work or social activities
● New problems with words in speaking or writing
● Trouble understanding visual images and spatial relationships
● Confusion with time or place
● Memory loss that disrupts daily life
So did Russ have Lyme? Or did he have Alzheimer’s? I eventually realized that he had both.
Like most chronic diseases, Alzheimer’s disease is, well, complicated. I’ve come to embrace the viewpoint of Dr. Dale Bredesen, a leading Alzheimer’s researcher. Dr. Bredesen notes that Alzheimer’s isn’t a disease—it’s a symptom, much like a fever. Fever isn’t a disease; it’s an immune system response to a problem somewhere upstream. Alzheimer’s is similar. The brain is constantly remodeling itself as we learn and change. It is a natural process of construction and deconstruction occurring every day. But in Alzheimer’s, the scales are tipped toward destruction, and brain cells systematically die, destroying memory and other cognitive functions. The multi-billion-dollar question is why? Could infection be the root cause?
The infection hypothesis of Alzheimer’s has been around for decades. In fact, Alois Alzheimer, the neuropathologist for whom the disease is named, presented infection as a possible causative agent. We now have the technology to investigate the link between microbes and neurodegeneration, but since the early 1990s, scientists have been chasing another potential cause. The beta-amyloid (Aβ) hypothesis blames the hallmark plaques formed in the brain as the root of the disease. Get rid of the Aβ and get rid of Alzheimer’s. At least that’s the idea.
But therapies targeting Aβ have failed again and again and again. Drug manufacturers made antibodies to Aβ to clear the peptide from the diseased brain; however, studies can’t correlate this clearance to a reduction in cognitive decline. The FDA’s recent approval of Biogen’s Aβ directed antibody, Adulhelm, in June of 2021 was surrounded by controversy. Ten of the eleven members of the FDA’s advisory committee voted against the drug’s approval and some later resigned in protest. Maybe Aβ isn’t the root cause after all.
Interestingly, in 2016, researchers at Harvard provided an entirely different perspective on Aβ. They discovered that the peptide acts as an antimicrobial and is a normal part of our innate immune system. Wait, what? Aβ isn’t a sinister agent trying to destroy the brain; it’s trying to protect it? And an antimicrobial? Doesn’t that imply that a microbe is involved? Is Aβ the immune system’s response to an infection in the brain? Many scientists think yes.
Studies have linked the pathology of Alzheimer’s to viruses such as Herpes Viruses and Cytomegalovirus and bacteria such as Chlamydia pneumoniae and Porphyromonas gingivalis. And there is also evidence that links Alzheimer’s to Borrelia burgdorferi, the bacteria causing Lyme disease. In the late 1980s, Dr. Alan MacDonald, a hospital pathologist, reported the presence of Borrelia spirochetes within the plaques of Alzheimer’s patients. His continued research has confirmed these findings, showing that Borrelia can be a causative agent in neurodegeneration.
Dr. MacDonald’s work was dismissed, much like other work supporting chronic Lyme as a medical diagnosis. But with new light on the role of Aβ, scientists have “rediscovered” the infection hypothesis. Recently, researchers at Tulane and Columbia Universities have identified Borrelia spirochetes in the brain tissue of a woman who suffered neurocognitive impairment. These spirochetes persisted despite multiple rounds of antibiotics, thus linking chronic Lyme and neurodegeneration.
So back to my husband, Russ. Does he have Alzheimer’s? Imaging scans of his brain say yes. Does he have Lyme? Results of a Polymerase Chain Reaction (PCR) analysis also say yes. So does he have Alzheimer’s caused by Lyme? The mainstream science jury is still out, but I believe the answer is yes. Well, to be more specific, I believe the cause is Lyme, the co-infection Bartonellosis, and a mix of other immune dysfunction. As I said before, chronic diseases are complicated.
Russ underwent treatment for Lyme, but eliminating pathogens behind the blood-brain barrier is tricky, and Russ’s disease was entrenched. Treatment brought improvement and hope, but we couldn’t get ahead of the decline. Russ is now in the final stages of his journey and doesn’t recognize our two children, who are 7 and 11, or me. Definitive answers on root cause won’t be available until his autopsy, and I’ve recently decided to donate his brain to science. The choice was heartbreaking yet simple. The Alzheimer’s and Lyme communities deserve answers, and science needs to evolve. If his donation prevents even one family from going through the pain and loss that we experienced, then maybe it will all be worth it.
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Nicole Bell is the author of What Lurks in the Woods, a raw and gripping memoir about her family’s journey with Alzheimer’s and tick-borne illness.