These days it’s no shock to learn that officials may not always give us the most up-to-date information on a fairly new disease which poses a grave threat to the public. The surprise is that it doesn’t involve COVID-19.
Since 2016, a nonstop avalanche of new findings on Lyme has crushed a lot of long-held beliefs about this disease. It is regularly misdiagnosed, harder to treat than one might assume, and can debilitate a person for months or years. In a few instances, its effects last a lifetime. Lyme is a huge – perhaps the biggest – health risk to farmers, forestry workers and others whose jobs are principally outdoors. In this first of a three-part series, I hope to correct some misunderstandings about Lyme disease, and explore why it’s so hard to diagnose.
Subsequently I’ll present new ways to protect ourselves and our families, consistent with the latest research. And since I have the dubious “advantage” of first-hand experience, I’ll describe the heavy toll Lyme took on my family, in hopes the same doesn’t happen to yours. As you likely know, Lyme disease is caused by a spirochete bacterium, Borrelia burgdorferi, which is transmitted by the oh-so-appetizing blacklegged or deer tick, Ixodes scapularis.
I won’t go into tick ID, as there are myriad online resources, including links provided at the end. The focus here is on what happens when a decidedly mobile pathogen with a craving for hearts, brains, and joints starts to drill into our soft tissues. As these mini-corkscrews auger around our innards, the resulting symptoms range widely from person to person. They are usually transient or periodic as well, making diagnosis all the more difficult. Early indicators of Lyme vary so much that “typical” symptoms may not exist. Sure, it can present as a fever and joint aches, but the first clue
something is wrong might be heart palpitations or profound mental confusion, things once considered late-stage Lyme symptoms.
While an expanding bull’s-eye rash (erythema migrans) was once broadly touted as “the most commonly reported sign” of Lyme, this “truth” has been revised downward. Cornell University Extension says “Clinical and population-based estimates give a lower rate, ranging from 27% to 40% of individuals who are infected with Lyme exhibiting the rash.” And according to Dr. Nevena Zubcevik, co-director of The Dean Center for Tick-Borne Illness in Charlestown, RI, the incidence of erythema migrans in confirmed Lyme cases is around 20%.
A significant number of Lyme cases are mistaken for multiple sclerosis, fibromyalgia, lupus, chronic fatigue, and psychiatric illnesses, among other disorders. Increasingly, it is misidentified as sudden-onset dementia. And all too often in regions where Lyme is beginning to establish, doctors tell a patient “It’s all in your head” because they expect a bullseye rash. Tragically, children under five are the age group most likely to go undiagnosed for long periods.
Blood tests, which are tailored to a 40-year-old strain of the Lyme pathogen, get a failing grade. The Canadian medical Association recognizes at least ten “phenotypically and genotypically distinct” strains of Borrelia burgdorferi. Many of these are not detected easily, if at all, by lab assays. The Western blot test is not administered consistently from one lab to another. Plus, the results are subjective and open to interpretation – it’s far from a “yes-no” situation. And two recently discovered species of Borrelia cause Lyme too, and neither shows up in blood work. It is an uphill battle to get doctors to begin diagnosing this disease based on clinical presentation, not blood tests.
If Lyme is detected early, most people recover with a three-week antibiotic course. But not always. In a 2018 paper, the National Institutes for Health stated “Several recent studies suggest that B. burgdorferi may persist in animals after antibiotic therapy.” A great deal of controversy surrounds the question of why symptoms last for months or years after an infection. I won’t wade into that morass, other than to say that everything we know about the issue wouldn’t fill a thimble.
The next segment will delve into practical and highly effective ways to avoid ticks, and what NOT to do when they are encountered.
Photo at top: Female deer tick courtesy of the Agricultural Research Service, Almanack archive photo.
I think this is a terribly important health topic that medical science has been slow to address for many reasons. One reason is because Big Pharma has no expensive “magic wand” cures to sell with the help of the medical community. Unfortunately, this is often what pushes the medical community – hopefully in a good direction. But as we have learned lately, these corporations can also push in the WRONG direction.
That being said, I also agree with you not posting specific ID for deer ticks. Deer ticks are currently implicated with Lyme, but how long is that going to last? If we get nonchalant about ticks and say, ‘well, that’s a dog tick I just pulled off – no worries’ – are we just setting ourselves up for more confusion when (NOT if) the hosts and spreaders begin to change?
On a similar line of thought, if we are indeed bitten by any tick, should Lyme be our only concern?? There are at least a dozen similar blood-borne pathogens that can be transmitted by ticks and other invertebrates to humans. How many organisms do our current test panels identify correctly? How often are they updated?
And with treatment comes perhaps the inappropriate use of broad-spectrum antibiotics that unfortunately always seem to develop resistance in the target organisms. We need research and development of specific treatments and/or immunizations – for humans, pets, and disease vectors – that are effective and less prone to organism resistance.
Humans have scores of autoimmune diseases for which we have no clue what causes many of them. Perhaps we should be looking harder for potential associations or transmissions from without by invertebrates sharing the planet with us. We can’t do this without studying these fauna in depth. We know very little about invertebrates, and are far from even having all of them identified. It is all about funding!
One of the main purposes of governments is to protect their citizens from within and without. In my opinion, governments around the WORLD need to be spending more money on disease research, and not letting it solely be the realm of private, for-profit Pharma looking for big payday drugs to carry them on for another generation. Meanwhile, we are knocking the invertebrate world (above and below ground) for a loop with insecticides (Big Chemical), causing natural population controls to fail and potentially entire ecosystems to crash. Governments around the world need to get these corporate entities out of their pockets and fund independent, peer-reviewed research across the globe. The boards of corporations are not in place to help the world – only their stockholders. We simply need better global funding for more and better global research.
Oh, BTW, I am looking forward to your next installment!! I am surrounded by ticks here.
I live in tick country and will be following this story as well. Thanks very much Paul.
Paul: A good story. Most of us in the ADK’s live in serious tick country and yes, lab tests are difficult. I was infected with a somewhat rare strain last year and no “rash’ or ‘bulls-eye’ was ever present. With a swollen foot (and fever, muscle and joint aches) it was first diagnosed as a cellulitis. When the Bell’s Palsy presented one day, the Rx for antibiotics was issued immediately. I was lucky, the three week course worked.
One point: I almost bypassed this article. Might I suggest less cynicism in your lead paragraph. You might be right, but it introduces a politic and opinion that takes away from the credibility of the story. Facts are better than aside commentary.
Thank you for this piece, and I look forward to the next installments. Three summers ago, I suddenly became seriously ill (extremely low heart rate and blood pressure), ending up in an ambulance going to the ER. They stabilized me and sent me home, telling me to see a cardiologist because I had no indicators that I should be having heart problems. The cardiologist could do nothing, and though I felt somewhat better, I was still very weak and dizzy. A week later, I went to urgent care and a smart NP decided to test for tick diseases. Test for Lyme, Anaplasmosis and Babesiosis all came back with very, very high numbers and I was put on Doxycycline (for Lyme and Anaplasmosis) and two other antibiotics for the Babesiosis. I slowly and fully recovered over the next three months. When the same, though less severe, symptoms appeared last summer, I knew what to do. Get on Doxy right away and get tested. Again, positive results. Your point about the symptoms not being those that are generally looked for with Lyme is extremely important. I never saw the tick or a bite and never had any of the normal symptoms. Still today, nobody seems to be able to tell me whether the recurrence (and future recurrences) are caused by the disease now always being in my system (with the potential to exhibit at any time) or whether I suffered a new bite last summer. Your reporting is really important for everyone to read. Thank you for covering this.
Very informative. What is important also, is seeking out a health professional who has extensive experience with tick diseases. A doctors knowledge is affected by his experience. We also need accurate tracking as to where the tick has moved to. In the ADK’s they are definitely on the move north. The hiking public would benefit by up to date info on where they are & what disease has been found.
We live on LI in the winter with our summers in the central Adirondacks. At Stony Brook University, they are in the forefront of searching for a possible vaccine. I will be looking forward to your next installment.
Physicians of all sorts need to keep up with state or nationally dictated Continuous Education periodically to keep their licenses. Some are even mandatory, such as HIV/AIDS infection control courses. Should tick-borne illness diagnosis and updates be MANDATORY in the US? Why not?!? Our knowledge is changing almost weekly – so should our education! This is indeed a public health emergency.
Correction: The Dean Center for Tick-Borne Illness is in Charlestown, Mass., not Charlestown, RI
What about children age2 and up wearing permethrin treated clothing? What did you mean by your pants were commercially treated?
Most commercially treated clothing is treated with permethrin unless things have changed recently. You can also treat your own clothes with Sawyer spray and it is supposed to last several washings – especially if you don’t wash those articles any more than you have to.
I don’t know about treating clothing on kids that are very young. I believe it is only toxic to insects/arachnids, but it could be anything that crawls! Be very careful with it.
Great article, Paul. I hope you next installment will talk about the incredible benefits of treating one’s outdoor apparel (shoes, socks, and pant legs) with Permethrin to completely eliminate ticks from one’s body. I spray these items once a month in tick season with Sawyer’s Premium Insect Repellent spray, available on Amazon and at other retailers. I have been doing this for years in the Adirondacks and in Connecticut, and for decades when going to the tropics to keep chiggers away. In all these years I have never had a tick on me, and all the folks I know who do this have similar if not identical results, and I live in tick country! The spray (0.5% permethrin) binds to fabric and lasts for up to 6 weeks or 6 washings. It won’t stain or damage clothing, plastics, tents, etc. I’m always mystified as to why this is not widely known and practiced. Folks need not fear taking walks in the woods for fear of Lyme!
Thanks for the Sawyer tip I’ll check it out.
Tom B. says: ” Most of us in the ADK’s live in serious tick country …..”
> Imagine that! Just a few years ago the Adirondacks had no ticks, the terrain was not viable for them to survive. Things are changing rather rapidly! We had some extreme cold temperatures in parts of the northeast this past winter, as late as a month ago, and in areas where there was no snow cover….so it came to me that maybe those extreme colds killed off a sizable population of the ticks as there was no snow-cover to protect them. I was curious to see if there is any truth to this. I suppose time will tell. Or are those little monsters becoming immune to cold also?
There was a report I heard on public radio a few years ago where this young woman was feeling ill, and then started showing coma-like conditions. This may have been in Maryland, or the DC area. The doctors couldn’t figure it out. And then a woman doctor came along and decided to check the girls head, and wouldn’t you know she found a tick imbedded there. They pulled the tick out and immediately that girl started getting better, snapped out of her coma-like condition. Just amazing!
Whenever I find a tick on me, or ‘not’, throughout tick season I dose up on oil of oregano which has antifungal, anti bacterial & antibiotic properties. There are books on this hardly known oil which swear by its healing properties. I am not sure of any of this but I’ve been doing this oil for well over twenty years and have had no negative effects that I am aware of. I haven’t been sick in many years, not even a cold, and I cannot say if oregano oil is the reason why. In my mind I think ‘placebo’ when placing two drops of this very potent oil under my tongue, that maybe it is working or maybe it is my mind telling me so. Either way something’s working for me. It never hurts to share information but always investigate, do not believe all that is said by others. One thing is for certain….whenever I come-in from a jaunt in the woods during tick season, the first thing I do is dose up on oregano oil, and I haven’t had any tick problems as yet, which could just be a coincidence of course. I keep an open mind!
Another thing which I found interesting regards oregano oil is thus: Traditional doctors, some of them, had never heard of this herbal remedy as recently as a few years ago, and some still don’t recognize it. Common practice in the medical field, before or after a procedure, is a list of ‘can do’s’ or ‘cannot do’s’, ie… no fish oil, no vitamin d, etc… After a procedure, I think it was a colonoscopy, I saw on the printout received from the hospital, that it was okay to continue taking this and that…..and oregano oil. That really surprised me as up to those moments hardly a doctor knew what it was.
In 2009 i was 69 years old. Lyme was just beginning to appear in the Northeast. In September of that year, on a weekend when our doctor’s office was not open, I went to Urgent Care with a tick I found on on my body after a hike. The nurse threw lt in the waste basket and because it was September, gave me a flu shot. Two weeks later I was unable to get out of bed and needed assistance. Referred by Dr. Joseph Hayes of Scotia, NY, the total charged for 1.0 Chrhchia (86666-GYGA) with LabCorp of Burlington, NC,came to $965.00. Medicare Approved $27.48. I, was months in Physical Therapy, unable to raise my right hand above my head or walk without assistance. I’m now 92 years old and having a problem walking.
$965. for a dose of medicine And we don’t have a healthcare problem in this country?And you’re still having issues! Our leaders have the best healthcare in the world…..and they don’t want us to have the same! Or ‘you know who’ don’t want us to have the same…..dontcha? You should be 82 years-old if you were 69 in 2009 Jane!
Don’t get old. I was born in 1930.