In honor of Lyme Disease Awareness Month, I’m re-running this first of a two-part series on Lyme disease. The CDC reports that Lyme causes over 300,00 illnesses each year! This is beyond staggering. Read on and learn what causes Lyme disease, its symptoms and treatments… plus some little-known facts that may surprise you.
Please note: As with all my health-related posts, this is for Lyme disease awareness, therefore is in no way intended as a means for self-diagnosis or medical advice. As always, if you suspect you or a loved one may have Lyme or any other medical condition, please seek help from a Lyme-literate, experienced medical professional. Also, I am in no way affiliated with or receiving any compensation from any of the doctors or website owners mentioned or linked to. As in the other posts, these are merely professionals and/or websites that I personally found interesting, informative, and/or helpful.
What Causes Lyme Disease? A Quick History
Lyme disease was first recognized in 1975 after large numbers of children in Lyme, Connecticut and two neighboring towns began to mysteriously develop what was thought to be juvenile rheumatoid arthritis.
Upon researching, it was found that most of the affected children lived and played near wooded areas where ticks live and that their first symptoms typically started in the summer months, the height of the tick season.
Several of the patients interviewed reported having a skin rash just before developing their arthritis. Many also recalled being bitten by a tick at the rash site.
Now why, you may ask, would ordinary ticks suddenly be carrying something that would cause such a horrendous illness, leading to something of a local epidemic?
Now that is an excellent question and one that we will tackle in a future post. For now, suffice it to say that there is fossilized evidence that Lyme-infected ticks have been around for millennia — which would explain how I managed to get it in Washington State in the early 1980s.
It would be many years before I would be diagnosed.
In 1981, the New York State Department of Health was investigating what they thought were cases of Rocky Mountain spotted fever on Long Island and sent deer ticks to the renowned Wilhelm “Willy” Burgdorfer at the Rocky Mountain Laboratories in Montana for examination. And no wonder! Rocky Mountain spotted fever on Long Island? Dr. Burgdorfer quickly discovered not the short, straight, rickettsia bacteria that causes the disease but instead a long, coiled bacteria he instantly recognized as what is called a spirochete.
Syphilis — Now that’s One Ugly Cousin
These are the same type of bacteria as Treponema pallidum, the culprit behind syphilis, making Borrelia and Treponema ugly cousins. Dr. Burgdorfer immediately speculated that the little nasties he was gazing at were what causes Lyme disease, and subsequent testing proved him right. Thus, the bacteria that causes Lyme was christened Borrelia burgdorferi, in his honor.
However, in recent years, more than just Borrelia burgdorferi have come to light. Even today, many doctors will lay the blame for Lyme squarely on the shoulders (or more aptly, coils) of B. burgdorferi, at least here in the US.
This may be because, contrary not only to the living proof researchers have found, but also contrary to their own official documents, updated this year, the CDC says that Lyme disease is caused by B. burgdorferi carried by blacklegged ticks.
Yet they contradict themselves here in this paper, last updated in 2016, where they say that a new Lyme-causing bacteria, B. mayonii, had been discovered (and the tick they have pictured definitely is not blacklegged). Never mind that it was discovered in 2013, during research that they helped fund.
I guess the wheels of government really do move a fraction of dead sloth speed.
And the contradiction itself? Um, I don’t know — because it’s the government?
Also, in the last decade, another Lyme-carrying spirochete called Borrelia bissettii, that had been implicated in European cases of Lyme, was discovered in several people in the US. The Mayo Clinic casually lists four main species of Lyme-causing bacteria in the US, here.
And let’s not forget Borrelia miyamotoi, which causes Lyme-like symptoms. There are more, but since I’m not in the textbook writing business, we’ll go on.
A Most Cunning and Treacherous Gang
The members of the notorious Borrelia gang are evil geniuses. Let’s take a look at the post office “Wanted” poster describing this gang.
Its members are tall, thin, and twisted, and the gang has been called the “Great Imitator.” Sinister masters of disguise, they are capable of presenting themselves as a huge variety of ills, among them Fibromyalgia, Parkinson’s, Chronic Fatigue Syndrome, Alzheimer’s, ALS, MS, lupus, arthritis, and around 350 other diseases.
As if this weren’t bad enough, the gang likes to gather together at their hideout, called biofilm.
A biofilm is basically pond scum. Really. If you’ve seen pond scum, you’ve seen a biofilm. Bacteria build their biofilms by attaching to surfaces and forming a protective matrix. The biofilm secretes a substance that makes them extremely resistant to our weapons such as antibiotics, disinfectants, high temperatures, and immune responses.
The Borrelia gang’s biofilm hideout has been known to make them up to 1000 times more resistant to antibiotics. Another trick these outlaws use to further evade their well-deserved execution is to hide by morphing into cyst, granular, and about five other forms.
Symptoms of Lyme Disease
The symptoms of Lyme disease are many and varied and can appear to be symptoms of other things, hence many people are misdiagnosed. You may have heard of the bull’s eye rash or, in proper medical terminology, erythema migrans, or EM.
Although not everyone who has been bitten by a Lyme-infected tick gets this rash, for those who do, it’s a safe bet they were just handed the Lyme booby prize. Doctors — and many patients — know this today, but 36 years ago when I looked down at the ginormous bull’s eye I’d just noticed on my leg, I didn’t have a clue.
Neither did the ER doctor I saw (as of course, it popped up on a weekend), who promptly diagnosed it as the bite of a brown recluse spider, even though experts insist to this day we don’t have brown recluse here.
But even if we did, brown recluse bites cause skin necrosis, and this bite did not, disappearing on its own in a week or so. So, either dear old Washington state had at least one tick with a mouthful of Lyme, or I was bitten while in Minnesota the year before. Strangely, the rash can mysteriously reappear months or years later.
“But it Only Happens in the Northeastern States!”
Thanks to the medical community’s ignorance and insistence that only people in the Northeast could be bitten by these filthy arachnids, there was no such thing as Lyme disease awareness here.
As a result, I went undiagnosed for 33 years, inching closer each year to an early grave and wondering what the hell was causing it.
There are other telltale rashes one can get after having been bitten, which you can see here on the CDC website. The rash usually appears days to weeks after the person is bitten.
But not everyone gets a rash and even fewer recall ever having been bitten by a tick. One reason is that baby ticks, called nymphs, are about the size of a poppy seed, but like baby rattlesnakes, their bite is just as dangerous as the adults.
Besides that, the wicked varmints numb the spot where they’re about to bite, so you wouldn’t feel it anyway. Then when they’re done sucking your blood and spitting their poison into you, they drop off and go their merry way in search of the next hapless victim.
Lyme disease has three stages, with differing symptoms at each stage. Besides the rash that may or may not manifest, here’s a list of some of the stages and some of their symptoms.
Keep in mind that these vary from person to person, and also depending upon which species of Borrelia is doing the biting. Also, not everyone will have all of the symptoms at each stage.
Early Stage — Localized
This could be days or weeks after being bitten.
- Small bump or redness at bite site
- Headache or stiff neck
- Muscle and/or joint pain
- Fever, chills, and/or other flu-like symptoms
- Swollen lymph nodes
- Extreme fatigue or lack of energy
Early Stage — Disseminated
These symptoms can appear weeks or months after the bite.
- Heart palpitations
- Extreme joint pain
- Extreme fatigue
- Facial paralysis (Bell’s palsy)
- Headaches and lack of energy
- Poor memory
- Inability to concentrate/brain fog
- Pain or numbness in arms or legs
- More and/or larger rashes covering more parts of the body
Symptoms can appear months or years — even decades after having been bitten. Sadly for some, these symptoms may be the first sign of Lyme disease due to its slow replication rate, which makes it even more difficult than usual to diagnose.
- Chronic fatigue
- MS (or MS-like symptoms; some have even reported classic MS-type lesions on the brain)
- Nervous system problems
- Mood/mental problems
- Severe headaches or even migraines
- Worsening memory, hearing, or vision
- Inflammation of the brain and/or heart
These lists are by no means exhaustive, and not everyone’s symptoms neatly line up with those above and on that timeline. For example, I never did get full-on face paralysis, but I did get a droopy eye. Oddly though, I didn’t get that until I’d been infected for 33 years — several months before my diagnosis.
Insomnia, on the other hand, began to plague me about 12 or 13 years after I was bitten, and the crummy memory and inability to concentrate began about 25 years into the mess.
What To Do
If you see a tick on you, don’t panic, and above all, don’t try to pull the little villain out using your fingers or by grabbing its body! This will pretty much ensure that its toxic head will remain in you.
There are tick removal tools you can buy that reportedly work fine, but long tweezers — the kind with the narrow, sharp point — will work just as well.
You need to grab it by the head, pulling slowly and steadily, with no twisting or yanking. Disinfect the bite, your hands, and the tweezers when you are finished. Here are directions and pictures to help you.
Now, resist the sudden urge to flatten the foul creature under your heel, flush it down the toilet, or send it to hell via cremation. Don’t you want to know if it’s hiding any of the Borrelia gang? Send it in for testing! The directions are on the site I just linked to.
And Now for that Surprise I Mentioned
At the beginning of this post, I alluded to a surprise at the end. In fact, there are several!
It has been found that ticks are not the only carriers of Lyme-causing bacteria.
So, what causes Lyme disease, besides ticks? The constant harping about how “Lyme disease is spread from the bite of infected ticks, blah, blah…” does not change the fact that there is proof of people having gotten Lyme from other bugs, and in turn, members of our infamous Borrelia gang have been found in other bugs.
If this is shocking to you, hearken back to the beginning of this post where I quoted the CDC as saying that there are a whopping 300,000 new cases of Lyme disease each year in the US alone. Now, let’s put on our thinking caps.
Do you really think that 300,000 people per year in this country are being chomped by Lyme-infested ticks? No? Neither do I. 300,000 folks being bitten by a variety of nasty bugs is much more logical.
Of course, logic alone proves nothing, but couple it with what the research shows, and I think we have a pretty darned compelling reason to ignore the Lyme-only-comes-from-ticks mantra. But could there be more causes of Lyme disease? Keep reading.
It has been shown that Lyme can cross the placenta and infect the unborn.
Just because it can, doesn’t mean it will in every case. And it has been shown that pregnant Lyme patients who were treated during pregnancy did not infect their babies.
The American Red Cross does not screen blood for Lyme
This one was a jaw-dropper for me. They finally did a study for Babesia microti in 2014-16 (scientists have only known that Babesia is easily passed via blood since 1969, but who’s counting), another sometimes fatal tick-borne infection that often piggybacks on the Lyme bacteria.
On their website, the Red Cross now says that anyone who’s had Babesia may not donate. Well and good. But what about Bartonella and Erlichia, two other bad guys who often ride along with the Borrelia gang? Not a peep.
And ask them about Borrelia and you’ll hear…crickets. The Red Cross site says that they ask questions about medical history and have potential donors fill out a questionnaire.
Most people who now know they have Lyme didn’t know it for some time, as Carl Tuttle points out in an email to the CEO and Medical Director at the Red Cross. Mr. Tuttle’s wife and daughter had both donated blood, not knowing at the time that they had Lyme disease.
Check out this short yet disturbing email thread, between Mr. Tuttle and the Red Cross regarding their failure to protect us from Lyme. Toward the end, Mr. Tuttle rhetorically asks if a questionnaire would keep HIV out of the blood supply.
Couldn’t have said it better myself.
This study suggests Lyme disease may be sexually transmitted, although this has not yet been definitively proven.
I suspect one day it will be. Again, 300,000 Americans being bitten by Lyme-infected ticks each year? The thing is, that’s just the number that the CDC gives at the moment, even while admitting that it may be much higher. Many suspect that the number is closer to 500,000.
Even if you were to include all the other creatures that have been shown to carry Lyme, still…could all of these people be the victims of Lyme via bug bites?
I don’t know. I’ll leave you to ponder that until next week when I’ll fill you in on various Lyme treatments, prevention, and politics.
Lyme politics? you ask, horrified. You betcha. Politics invade many, if not most illnesses and diseases, and Lyme is no exception. Many people insist that politics is why the Red Cross doesn’t check for Lyme and other infections. They’re probably not far from the mark on that one.
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