When Did I Get Infected?

My friend, Sally, asked me this recently, wondering if Lyme wasn’t a mostly East Coast disease. I thought I’d give the long version response here, so I could give her a shorter answer by email. (And thanks for the good question, Sally!)

My docs and I have traced my Lyme symptoms back to my childhood. It’s likely that I was first infected sometime after my family moved to Minnesota when I was ten, and then reinfected during one or more family vacations in Washington State (my test results indicate at least one strain associated with that area).

I was probably reinfected again in NH (I had lots of rashes, bouts of flu, and memory problems in my early thirties), and probably experienced one more reinfection when I lived in southern MN in my late thirties. This is the one I think broke my immune system’s back, so to speak, and probably happened just before my “carpal tunnel” symptoms started, which I now know is a common symptom of Lyme Disease. I’ve learned that this pattern of infection and reinfection is very common.

As you may know from my past posts, neuroborreliosis (a better name than Lyme Disease, since there are many more strains than the one associated with Lyme, PA) is epidemic. It’s reported in the US at a higher rate than AIDS and HIV, and is found in every state in the US and every continent of the world. The CDC does not require reporting, neither do most states, so the best numbers available are underreported by at least a factor of ten (according to the CDC) or as high as a factor of fifty (estimated by prominent researchers).

Some Lyme Literate docs and researchers believe that most people in the US already carry the borreliosis bacteria. My doc believes that many common minor symptoms that go unreported or self treated (like headaches, memory problems and aches and pains we commonly associate with aging, PMS, thyroid and other hormone imbalances, asthma, allergies, back, neck, or joint problems, etc) may be caused by borrelliosis, possibly in combination with other bacteria.

Lyme/borreliosis is called the “Great Imitator” because it can mimic almost any disease. Most people diagnosed with Chronic Fatigue, Fibromyalgia, and Rheumatoid Arthritis either test positive for and/or respond positively to treatment for neuroborreliosis. There is also recent research that points to neuroborreliosis as a possible cause of Alzheimer’s Disease, MS, and ALS.

My doc’s theory (shared by many researchers) is that those of us who experience extreme symptoms are infected with more than one strain of neuroborreliosis bacteria, probably other types of bacteria (he calls it a “bacteria soup”), and probably have experienced factors that caused our immune systems to start losing the battle against this “bacteria soup.”

Recently, I’ve started to feel that our current medical and social understanding of neuroborreliosis is comparable to how we understood AIDS and HIV in the 1970s and early 80s. In twenty or thirty years, I bet we’re gonna look back on this time as the dark ages for Lyme Disease.

Hopefully, by then there will be better medical technologies for prevention, diagnosis, and treatment of Lyme, just as there are now for AIDS and HIV. Believe it or not, this comparison is one of the few things that cheers me up these days, especially since the outcome for someone who has been infected as long as I have is grim.

That said, I started treatment for Bartinella yesterday with a great deal of hope. I have a lot of sudden burning muscle pain, am very exhausted, brain-fogged, emotionally-rollercoastery, and I’ve had a few bouts of dizziness.

But on and forward, I say! Think good thoughts, keep in touch, and I’ll keep you posted.

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