Written by Richard Wilson

This is a great opportunity to be a Lyme disease patient and share. You and I may bemoan the weather, but Dani loves it.

As the world gets warmer and wetter, they’re partying. Ten years ago, the wooded valley I call home had two distinct tick seasons, from mid-March to June, with a shorter period beginning in the fall. Last year, I had my first baby in early February and my dog’s last in November, and it continued non-stop throughout the summer.

Dani is the original robber. They lurk on the tips of blades of grass in and around forests, waiting for an unsuspecting victim to pass by. They want free food, but it ends up being a losing deal for us. The ticks suck our blood and develop Lyme disease, a bacterial infection with very unpleasant consequences.

I’ve just been diagnosed with Lyme disease, so I’m paying attention to this. To make matters worse, I have had this disease for about 8 years without treatment. That’s why most doctors won’t notice even if you have the disease, and I don’t want anyone to do that.

Early diagnosis is essential

There are two fundamentals to understand about Lyme disease, and they are closely related. While early diagnosis is essential, it is also very difficult to obtain. Speed ​​is everything. Because there is no organ or corner of the central nervous system that the Lyme disease bacteria won’t destroy if given the chance.

So how do you know if you’ve been exposed? Many people have never seen the tick that infects them. One millimeter long can get stuck, become infected, and then fall off. Some will devour it, burying their heads in your flesh and swelling up. The longer you stay, the greater the risk of infection. Thankfully, dog tick removers work great for us too.

Official advice is that the first visual clue of infection is a circular red rash that appears around the tick bite site. This is where the medical industry begins to turmoil.

In 2016, I underwent surgery for a circular rash caused by a tick bite. The nurse said it wasn’t Lyme disease (it was bright red from center to edge and didn’t match the eyeball photo on the screen). No treatment was offered and I was as ignorant as the nurses at the time.Now you know that Any Any type of rash or blisters (not a rash) that may be associated with ticks should be treated as Lyme disease. I also know that many people with Lyme disease don’t have a rash or blisters.

becomes terrible

Things get even worse for patients and doctors. Blood tests produce an equal number of false positives and false negatives in up to 25% of cases. So even if your doctor suspects Lyme disease, which is not the case in most cases, the test results are very likely to be wrong.

The next problem is the doctor. Once the bacteria starts working, your symptoms may include heart disease, influenza, minor strokes, dementia, diabetic neuropathy, fatigue syndrome, Bell’s palsy, arthritis, intestinal and organ dysfunction of any kind, viral infections, and Parkinson’s disease. It can be mistaken for illness, sagging, or fatigue syndrome. soon. Sufferers are constantly exhausted and, in my experience, can sometimes look unevenly gray. This last speckled observation is not in the textbook, but it should be in the textbook.

No other symptom is more familiar to doctors. And to see what’s familiar, a quick look around the waiting room reveals what’s obvious. The majority of patients are obese and have diabetes, coronary heart disease, etc. Most people who are not obese tend to age as they get older. I’ve had a few kids sniffle, and I’ve had one or two adults lose an argument over a power tool. There are oversized chairs, but no dispensers of free tick remover, and no warning signs or leaflets about how to avoid Lyme disease. It’s invisible.

Attending most doctors’ surgeries will tell you that Lyme disease is the most prevalent insect- and parasitic-borne disease in North America and Europe, and one of the fastest-growing infectious diseases in both countries. You’d never imagine it. That’s big. According to the CDC, nearly half a million Americans contract the disease each year. Many more people are infected but undiagnosed in both North America and Europe. There are many challenges for many people.

delay in diagnosis

Here’s why it took me 8 years to get treatment. As mentioned above, I first visited my doctor’s surgery in 2016 with a circular red rash caused by mites. A patient treated with antibiotics at this stage, in most cases, quickly recovers to 100%. Therefore, medical guidelines say to treat first and then confirm the diagnosis. Although the risks of antibiotics are very low, the consequences of delayed treatment are serious. In my case, medical ignorance led to an incorrect diagnosis.

Trouble started slowly. Within two years, I began to experience worrying levels of fatigue and pain. He went to the doctor numerous times, had scans and tests done, but nothing was found. Growing more and more worried, I remembered the tick rash and ordered a Lyme test. It’s back to negative. No one told us how inaccurate the tests were, and still are.

Fast forward to more scans, tests, a gallbladder removal that was supposed to solve my problems (and didn’t), a second negative Lyme test, and more. I was a little medical mystery.

Then, this fall, I paid for a third test and it came back positive. The next day, the doctor retested both the standard ELISA and Western immunoblot tests. Both tested positive. Her 3 positives in one week, including the Western immunoblot, are equivalent to a positive diagnosis.

Problems arise when discovery is delayed in this way. Over time, Lyme bacteria also attacks and disrupts the autonomic nervous system, which controls everything that happens unconsciously, including blood pressure, breathing, heart rate, and digestion. They also mess with our short-term memory, so when you stop to make a cup of coffee, you might have to remind yourself that you’re writing about lime. That’s very disconcerting.

Oddly enough, I never forget why I thinned out the adjectives or moved the subclauses to the bottom of the paragraph. That’s why my blood pressure sometimes changes from his 180:140 to 80:50, and why my heart sometimes sounds like Animal, the drummer from the Muppets, playing crazy rhythms with one hand. That’s the reason. And when drugs are added to treat symptoms, cause and effect become complicated.

complications

If it’s hard to get a diagnosis, it’s even harder to get rid of Lyme disease. Symptoms can last long after antibiotics have finished, and the longer you have been sick, the longer your symptoms will last. When this happens, researchers refer to the following information very carefully: After treatment not lime, length- or Chronic-lime. This may sound like semantics, but it’s important.

I was treated with two courses of antibiotics (one with the sledgehammer and one with the piledriver), but it is highly unlikely that any of the bacteria survived this onslaught. they are dead. So I now live with the damage that Lyme bacteria has caused, especially to my nervous system. I felt like shit then, and I still feel that way now. This could take years to repair.

Imagine a human-scale recreation of a desolate battlefield. The war ends, the troops return home, and all that is left is a landscape of devastation and dysfunction. Eventually, the land will recover, the trees will grow back, and all unexploded ordnance will be removed. How long will this take? I don’t know. Welcome to post-Lyme disease treatment.

Footnote: Whole genome sequencing Borrelia burgdorferi, The tick-borne bacteria that cause Lyme disease have been shown to be extremely diverse and complex. This is thought to explain multiple symptoms of Lyme disease, from severe arthritis in children to fatigue and debilitating joint, neurological, and cardiovascular effects in adults.

Richard Wilson is a writer, filmmaker and former BBC environment correspondent who lives in the UK.This article first appeared in his monthly newsletter fish rise.