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Whether you have untreated stage 3 Lyme Disease or have already received antibiotics after your fateful tick bite, Lyme Disease can wreak havoc on your health and life for a very long time. How can you recognize the signs of "chronic Lyme Disease"?

Ticks suck — quite literally.

After latching onto the succulent bits of your anatomy, like your armpits, butt crack, thighs, behind your ears, or any other place they fancy, they'll feed on you like any other parasite. The fact that ticks may also carry a nasty surprise in the form of the bacterium Borrelia Burgdorferi — which will give you Lyme Disease — is now, fortunately, pretty well known. Knowing all about Lyme Disease doesn't, however, necessarily prevent you from getting it, or from having it for a long time before finally realizing that there's something seriously wrong.

"Seven of my coworkers have had serious Lyme Disease," Alaine, a warden in a nature reserve, told me, continuing:

"One was in a wheelchair for a year or so, another had to quit her job due to the neurological effects of chronic Lyme Disease, and a third had badly swollen joints and also had to go on sick leave. Yet another coworker who had Lyme Disease developed debilitating memory problems that presented like dementia. All these people were physically fit, mostly young, and active before being diagnosed. Prolonged antibiotics do improve the situation, but many have had flare-ups. When Lyme Disease plays up, it makes functioning as a warden extremely difficult." 

Tucking her pants into her socks and wearing wellies, covering up, and using DEET-based bug repellent haven't helped Alaine avoid Lyme Disease. She shares:

"I've been bitten by ticks more times than I can count and despite that, I didn't recognize the symptoms of Lyme when I got it, because I never saw the tick in question nor got a bull's eye rash. Yes, I do examine myself after doing my rounds, but ticks hide in all sorts of places and I didn't catch this one. I initially attributed my fatigue and aching joints to aging before finally being tested, after which I was on antibiotics for two weeks. When I look at my team at work, I realize I am very lucky not to suffer from long-term consequences."

Around 25,000 people are diagnosed with Lyme Disease in the US alone each year [1]. Could you, too, have Lyme Disease without realizing it? If you've already been diagnosed with and treated for Lyme Disease, could you still have developed chronic Lyme Disease?

The Stages Of Lyme Disease And Their Accompanying Symptoms — And How You May Still Miss Them

Lyme Disease comes in three stages, each of which has their own distinct symptoms [2]. 

Localized Lyme Disease or Stage 1: Days to weeks after the tick bite, Borrelia Burgdorferi haven't yet spread through your body, and you are likely to experience flu-like symptoms. A fever, muscle and joint pain, a stiff neck, headaches, and a feeling of general malaise may plague you. The much talked-about "bull's eye rash" (erythema migrans) can act as a tell-tale sign to get yourself to a doctor, but make no mistake; it doesn't show up in everyone.

Alaine didn't have a bull's eye rash, and never saw the tick who gave her Lyme Disease. This is more common than you may think. Like her, you may dismiss these symptoms as a flu, some random virus, an integral part of getting older, or having an overly busy life — things you wouldn't ordinarily seek medical help for. 

Early disseminated Lyme Disease or Stage 2Borrelia Burgdorferi are making their way through your system, and weeks to months after your unwanted encounter with a tick, you may experience pain and numbness, Bell’s palsy (short-term numbness or paralysis of the face), heart palpitations, shortness of breath, and chest pain. You'll begin to catch on that something is wrong, but by this time, a tick bite may not be anywhere on your mind even if you knew you were bitten, and you may get lost in the battery of diagnostic tests. 

Late disseminated Lyme Disease or Stage 3: This is where things get really scary. Cognitive problems, muscle weakness, swollen joints, tingling feelings, speech problems, and debilitating headaches can all present as Lyme Disease devastates your whole body months to years after the initial infection — as they did in Alaine's coworkers.

What Is Chronic Lyme Disease?

Nothing, really — though it's certainly discussed in a broad range of circles, "chronic Lyme Disease" has no clinical definition [3]. The fact that the term "chronic Lyme Disease" has even been used to describe a range of symptoms in people who were never diagnosed with Lyme Disease [4, 5] and for whom there is no evidence that they were ever infected by Borrelia Burgdorferi casts the term into the realm of pseudo-science. 

When you're plagued by crippling symptoms and looking for answers — any answers — that might help you feel better, Lyme Disease may appear on your radar, or your healthcare provider's. Conditions ranging from arthritis, osteoarthritis, and spine diseases [6] to multiple sclerosis and dementia [7] have led to the misdiagnosis of Lyme Disease, but a diagnosis of chronic Lyme Disease will not help you if you do not actually have it.  

The Long-Term Consequences Of Lyme Disease

Despite potential misdiagnoses, Lyme disease can absolutely wreak havoc on your health over a very long period of time.

We can distinguish between two separate groups of patients here:

  • Those who have undiagnosed and therefore untreated Lyme Disease. 
  • Those who have already received treatment for Lyme Disease (in the form of antibiotics) but are still experiencing symptoms as Lyme Disease caused long-term damage. 

The first group, people with stage 2 and 3 Lyme Disease, can be treated with a longer, around a month-long, course of antibiotics (usually doxycycline or amoxicillin). The second group can more accurately be described as suffering from post-treatment Lyme Disease syndrome (PTLDS) or post Lyme Disease syndrome (PLDS) than as having chronic Lyme Disease. Though experiments with long-term antibiotics caused some sufferers to report improvements in their symptoms, there is currently no clinical evidence that antibiotics after the initial treatment for Lyme Disease actually work. [8]

Both groups may face similar symptoms, most commonly [3]: 

  1. Arthralgias, or non-inflammatory joint pain anywhere in the body, which is associated with a range of other infections as well [9]. 
  2. Myalgias, or muscle pain. 
  3. Frequent and severe headaches. 
  4. Chronic neck and backaches. 
  5. Chronic fatigue. 
  6. Irritability and mood swings. 
  7. Cognitive dysfunction — primarily the forgetfulness and lack of concentration that one of Alaine's coworkers also experienced. 

In Conclusion

If you've not yet been diagnosed with Lyme Disease but think you may have it and have for rather a while, it's time to see a doctor. Antibiotics can help rid your body of the bacteria that cause the disease, but do not guarantee you will not experience long-term problems. 

What if you've already been treated for Lyme Disease, and think you may be dealing with post-treatment Lyme Disease syndrome? There is currently no reliable data on how often this happens, but it is anecdotally clear that it absolutely can. If seven of Alaine's 20-odd strong team of nature-reserve employees potentially in daily contact with ticks developed severe and long-term symptoms after receiving antibiotics, that tells me that forestry workers would make for an excellent study sample in future research. There's clearly so much to still be learned about the horrible realities of Lyme Disease. Alaine heard, through the warden grapevine, that "Borrelia Burgdorferi can hibernate and just kind of hide out in your joints even if no blood test detects it — and come back to bite you later", for instance. 

While real science catches up to mysteries of the miserable life so many of her coworkers are now living, they and many others who are still plagued by the consequences of an unfortunate microbial donation made by a tiny arachnid may feel they have no choice but to turn to alternative remedies. Be careful you don't fall into the dubious rabbit hole of dangerous alternative treatments for chronic Lyme Disease, though! Seeking help for your individual symptoms from a real doctor is still, for now, your best bet. 

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