Ixodes scapularis (aka 'Deer Tick')

Living with Lyme Disease – 30 years and counting…


(The recording above is the radio program “Lyme Disease Controversy Comes to the Capitol“, broadcast on New Hampshire Public Radio by Elaine Grant on Monday, February 01, 2010.)

I have Lyme Disease. I caught it when I was around five years old.

Ixodes scapularis (aka 'Deer Tick')
Ixodes scapularis (aka

You get it from the ‘deer tick’ (aka the ‘baby tick). Fundamentally, Lyme disease is a bacterial infection.

Where did this all begin? Well, let me tell you…
I was about five years old (my memory of precisely when is obviously not perfect). I held no fear of ticks or insects, having grown up barefoot and wild in the forests and swamps around Chappequa, New York. As most young children are, I was impervious to any fear of nature, insects or animals.

Ticks do not crawl across the skin like many other parasites, nor do they hop around as 6 legged jumping beans like fleas (yech!). They find a nice, sometimes shaded, piece of skin (mine was behind my ear) and begin to make a home for themselves.

I believe, like mosquitos and leaches, they have a natural anesthetiser in their saliva that cloaks the puncturing of the skin (unlike fleas, the little bastards).

The tick then nestles into the skin, burrowing over a period of hours or days until all that is visible above skin level is a raised black bump which looks very much like a dark hard-shelled freckle.

As ticks can carry blood-born diseases (like Lyme Disease), the ‘host’ for the tick is not meant to directly pull or pick the tick off, as this risks bursting the blood-filled little creature. The host (you or me) could then become infected with whatever it is the tick is carrying. The best way to remove the tick is using a pair of tweezers to ‘work’ the tick out of the skin. In my case, the doctor used tweezers to remove the fat blood-filled insect from behind my ear. Yet I get ahead of myself.

I had come hopping down the stairs one weekend morning, two at a time as kids often do, grabbed some cereal from the kitchen, headed for the TV room and thrown myself on the couch to enjoy some early morning cartoons and lovely honey-covered Cheerios (not ‘Honey Cheerios’ but actual original single-flavour Cheerios with honey on them…how I miss the taste).

Having wolfed down the bowlful I noticed an interesting brown splodge on my right thigh, similar to the camouflage on my GI Joes (I had all of them, some presently buried by the low loose stone wall that bordered the left side of the front garden after a particularly heavy-casualty battle the week before).

I was just tracing my fingers over it, wondering if I had somehow stained my own skin inadvertantly with a pen or watercolours the day before and promptly forgotten about it.

After a bit of time staring in awed fascination at the dark oddly-shaped splodge on my right thigh, I noticed many other similar splodges, all seemingly having sprouted up overnight.

These ‘EM’ or ‘ECM’ ‘splodges’ (‘erythema chronicum migrans’) are actually manifestations of the spirochete having spread from the point of infection, or tick bite. The first EM ‘splodge’ is meant to show up around the immediate tick bite site. Then once the spirochete have had time to attack the body and spread (over days or even weeks) further EM splodges appear.

I woke up one morning with EM splodges spattered across my body, as if some camouflage gnome had snuck into my room overnight and painted my skin from head to foot in army paint.

If the EM splodges are only meant to start showing up around the area of the bite, to then spread over days or longer to the rest of the body, then I am sure my mother, or I, or any of the many people we saw each day, would have noticed a brown camouflage EM splodge appearing across the back of my neck from around my ear (I had very short almost white-blond hair and relatively pale skin – a dark bruise shape behind my ear would have stuck out like a pair of golfing trousers in Wimbledon centre court).

Instead, I went to bed with clear skin and woke up covered in skin-deep war-paint. Of course, eventually, I called my mom in. She did the normal double-take, walk up, kneel down, prod, look at the other splodges and slowly turn a faint shade of grey – an unusal colour for such a usually healthily rosy woman.

I felt slightly responsible to keep her calm as we rushed off to the doctor’s to get me checked out. Sitting on the plastic mattress cover up high on the doctor’s examining table I felt tiny and a bit distressed. My mother stood off to my right, looking anxious.

I can remember the doctor leaning close by, putting some tweezers behind my ear, then working at something there. Eventually, he pulled the tweezers from behind my ear with one hand, bringing his insect gold across my periphery vision. I can still see the squirming eight legged insect now – fat and ready to burst with my blood.

I already knew what ticks were, that they drank your blood, because I had been informed of this at a very young age – as soon as I could consciously understand anything. One of the dangers of running around in the woods and nature in the general vicinity of our home and even in the playground at school was our proximity to the luxurious green woods that bordered all of these regular play areas of me and my sister. So I knew all about fleas, leaches and ticks and how they bit or burrowed into your skin to suck your blood.

Every time I came home from a day outside, my mother would make me sit in a kitchen chair and carefully comb my head, scalp, behind my ears, arms, legs, chest, between fingers and toes, looking for ticks or other parasitic insects. Somehow we had missed this particular guy, because he was full to bursting with my precious life fluid.

Having carefully entrapped the fat squirming tick, the doctor then reached across and brought into my vision a transparent glass screw-top jar teaming with live ticks of all different sizes. Unscrewing the top, he placed my tick inside and closed the top.

I can still picture my tick joining the dozens that already inhabited the space inside that jar. I remember being more fascinated than disgusted, much like any child when confronted with a scab to pick off, or a particularly nasty looking cut or scrape. Once the pain and fear are dealt with, fascination takes hold, driving memories deep into hardcoded long-term storage, allowing me to pick at them even now.

Months of antibiotics were punctuated by blood tests involving the taking of containers of blood (I am sure these were relatively small but to me they looked massive). Now, you may not be aware, but a child of five or six does not have a visible vein to speak of.

The first time the nurse took blood from me, I was sitting next to a metal cabinet (the kind where the drawers pull out and have hanging files in them), with my mother just in front of me and off to the right. The nurse suggested I hold her hand while she looked for a vein in my left arm.

‘Looked for’ is an euphamism. Although I am sure the nurse was doing her best to be gentle and professional, there is no painless solution for sticking a large needle into a child’s arm in the hopes of finding the vein, moving it around a little, not finding the vein, pulling it out and trying again (both arms, if you please). Suffice it to say that I am relatively terrified of needles, or any slicing or cutting instrument these days.

It hurt a lot. I remember the nurse suggesting I hold my mother’s hand, which I did the first time, at least. After seriously crushing my mom’s hand (I know she was in pain, because even the nurse suggested I grip one of the metal drawer handles almost immediately, instead of crushing my mom’s hand), the nurse did eventual manage to find a vein and take several ampoules of blood.

This same exercise went on every month for several months as the doctors tried to figure out if the disease was gone. Eventually it was cleared and I was allowed to carry on my normal childhood fun and frolics in the belief that I had been ill but now was cured.

I was to find out almost 9 years later that this was a fallacy. At 15 I learned that my Lyme Disease was not cured. I was going to carry on having Lyme Disease for life. I just needed to keep track of the symptoms, getting retested and retreated as and when necessary.

Lyme Disease Information:-

Depending upon the expert you speak to / read about, Lyme Disease (LD) is either a bacterial infection that can be cured by an amount of antibiotics over a period of time (one to three months), or it is a bacterial infection whose symptoms can be dealt with via a bout of antibiotics over a period of time (one or more months) yet which can also become a long-term or ‘chronic’ illness.

There is a long-running argument between various thinkers, doctors, government bodies, insurance companies and individuals about whether Lyme Disease can be considered ‘chronic’. Some in the US medically and legally state that it cannot be considered ‘chronic’, rather that for an individual to suffer the same affects as an infected person, they would have had to become re-infected (from a new tick bite). Others believe and have proven scientifically that the bacteria ‘spirochete’ linked to Lyme Disease is capable of living in the skin of an infected animal or human even with enough antibiotics in the bloodstream to kill the Lyme spirochete.

These two divergent views are upheld and propogated respectively by the “Infectious Diseases Society of America” (IDSA), which purports that there is no such thing as ‘chronic Lyme disease’ and that any ongoing issues are linked to unrelated “autoimmune response triggered by the eradicated spirochetal infection” (“Chronic Lyme Disease and the “Axis of Evil”” by Raphael B. Stricker; Lorraine Johnson, Future Microbiology. 2008;3(6):621-624), and the “International Lyme and Associated Disease Society” (ILADS), which believe that ongoing ‘chronic’ issues from initial Lyme Disease sufferers are due to the Lyme spirochete being “able to evade both the host immune response and short-course antibiotic therapy to establish chronic infection in protected tissue sites, much like TB. This chronic infection leads to persistent musculoskeletal, neurologic and cardiac symptoms that are the hallmark of chronic Lyme disease.” (“Chronic Lyme Disease and the “Axis of Evil””)

Having lived with Lyme Disease since I was a young child, including having it flare up again when I was a bouncingly energetic (some might say overly hyper) 15 year old who was living in London at the time (with very little chance of exposure to deer or deer ticks) and now again (although as yet untested) at 35, along with continual joint problems, recurrent arthritis and upper back / knee problems, as well as fatigue (all of which are well-known sypmtoms of the onset of Lyme Disease) I am more than happy to throw my hat in the ring on the ILADS side of the equation.

This is because I have lived with regular backpane and aching joints for as long as I can remember, exacerbated to a lesser or greater extent by the change in the weather, the amount of running and high-impact exercise I got up to, my diet, general health and, most recently, age.

Yes, I am only 35. Yes I am in relatively good shape (slightly pudgier than I want, but not anywhere near overweight or obese). Yes I have a long way to go before I can properly call myself an ‘old man’. Yet I already feel there are things I cannot do already without relatively large repercussions (run, carry too much weight on my shoulders, pick up anything too heavy). Repercussions can include being unable to move after a night’s sleep (whole back locked up from the shoulders down), swollen / sore knees, being unable to walk without soreness or pain, swollen knuckles and finger joints.

For those who may think this is just a whinge (man flu / hypochondria of the first order so to speak), the first ‘discovery’ of what is today called ‘Lyme Disease’ (named after ‘Lyme, Connecticut’) was initially thought to be “a statistically improbable cluster of pediatric arthritis occurred in the region around Lyme, Connecticut.” Or “children’s arthritis” for the rest of us non-medically trained individuals.

Doctors at the time (late 1970s, less than a decade before I caught it in Chappequa, New York) noted the highly improbable cluster of children’s arthritis along with the ‘bruising’ which is now known to be a sign of ‘Lyme Disease’. This bruising is also called the ‘EM’ or ‘ECM’ rash, which stands for ‘erythema chronicum migrans’. (I note without any sense of irony at all the inclusion of the word ‘chronicum’ included in the accepted scientific name of the rash that is considered an accepted sign of Lyme Disease. Yet somehow Lyme Disease is not chronic? How can a symptom be chronic when the underlying root cause or disease is not? Enquiring minds want to know.)

“In the states where Lyme disease is most common, the average is 34.7 cases per 100,000 persons.” (In the rest of the States as a whole the average is closer to 9 cases per 100,000 persons.) My reborn interest in the disease has obviously come from the flaring up of the symptoms which I am presently experiencing, fanned now by the fact that the argument over whether Lyme Disease is ‘chronic’ or not is still ongoing at present even amongst the ‘experts’ involved in diagnosing, analysing and attempting to respond to infected people.

I remember back when I had it the ‘second’ time at 15 years old (although I was nowhere near any area that might have had infected ticks as far as I could tell) being told by the doctor (in New York – I had to get my blood tested in the states and go there for treatment due to a dearth of knowledge and experience here in the UK at the time 20-odd years ago) that what I had been told earlier as a child (the first, and ONLY, time I actually caught Lyme Disease as far as I am concerned) about the three months of amoxacillin curing the disease, was actually false and that the disease was chronic, i.e. with me for life, laying dormant and flaring up as and when. The second bout of antibiotics I took when I was 15 was intense yet seemed to curtail the symptoms that had flared up at the time. (I seem to remember taking 500mg of the drug as both a 6 year old and a 15 year old, but that this clearly cannot be true – according to info on amoxacillin anything more than 300mg is a potentially toxic dose for up to 6 year olds.)

So what is the moral of the story? Lyme Disease is real. It is chronic, or at least the affect it has on the body (my body) is permanent, i.e. ‘chronic’. The symptoms do flare up every decade or so, it seems and the damage is long lasting (arthritic inflammation of the joints, recurring fatigue). Whether this means that at some point I am going to succomb to something more than minor joint soreness and pain, and bouts of seemingly endless tiredness, I do not know. What I do know is that there is no single place of clear-cut straightforward factual and correct information that I have yet found about this illness. I look forward to when there is. Regardless of what it means (long term) and where it came from, it would be nice to plan for the future.

All in all, I guess there’s a little something for everyone in Lyme Disease;

  • For the documentary lover who wants to get under the skin of a problem, really feel their way to the crux of what the Lyme Disease sufferers are going through, there is the acclaimed documentary ‘Under our skin’.
  • For the modern day activist against the ‘corporate overlord’ squashing the ‘little person’, there is the monopoly-like incestuous relationship the IDSA has with insurance companies and a certain subset of the medical clan (one source of information relating to this conflict / controversy is the NHPR radio broadcast covering the conflict of interest, which you can listen to online here
  • Lab 257 The Disturbing Story of the Government’s Secret Plum Island Germ Laboratory” which proposes that Lyme Disease was actually germ warfare created by the government in the (actual) ‘germ laboratory’ that exists on ‘Plum Island’, an 840-acre private (government-owned) island in the ‘Hamptons’ (the playground for the rich and famous next to New York).
  • For the medically astute there is the plethora of information freely available online (just google ‘Lyme Disease’ and ’emedicine’ as a starter for ten or follow this link).
  • For the actively involved or those wanting local information, there is Lyme Disease Action a UK-based charity
  • There is also the International Lyme and Associated Diseases Society (ILADS)
  • For an article by a published UK journalist and fellow Lyme Disease sufferer, Alex Wade, click here.

For the spiritual one-mind-one-body people, I can honestly say that I had been having nightmares as a child up to having Lyme Disease (and probably afterwards too) where every time I closed my eyes dozens of massive spiders would rain down on my face, causing me to scream myself awake.  Now I look back on it, maybe this was my body telling me through my subconscious that something was wrong, that a tiny insect was burrowing into the skin behind my ear, infecting me with a lifelong disease. After all, ticks are of the arachnid family.

For me, Lyme Disease is simply a part of me (quite literally), something which I have had for as long as I can remember. The question of whether it is chronic is a moot point – regardless of what the IDSA and insurance companies in the US say, I know what I have and what I have had for most of my life. I also know the long-term affects, at least for me this far; mild arthritis, cyclical seasonal fatigue and a general degradation in my joints as a whole.

If this changes for better or worse, I guess I’ll be the first to know.

The upside to this is that I know how Spider-man felt when bitten.

I’m just waiting for my transformation into a white-tailed deer. 😉

(Let’s hope it doesn’t happen during hunting season!)

One thought on “Living with Lyme Disease – 30 years and counting…”

  1. I remember suddenly feeling more fatigued than I ever felt before,10 yrs earlier I had hep and mono at the same time and this felt 100times worse.This was in 1989 when my joints flared up so bad I could hardly walk,not that I could get up anyway but dragged myself to a Dr. who did blood work and sent it to the Center for Disease Control,which took 6wks to come back. I lived in CT and loved to hike sooo then found out I had “Old Lyme Disease”it was something that broke out but yet really didn’t know what to do for it and the antibiotics can to late.With an already weak immune system this has damaged me more than I can say.Right now I’m having a flair up and am sick of seeing Dr. after Dr.(hemolotalogist,infectious disease,RA..)pls. excuse my spelling but I have brain fog with a 97degree temp,anxious and shaky, with none of them helping me or working together.I needed to share and need to rest,I’m at my wits end and wish someone would HELP ME.Thx for this site,I know I’m not alone in this but I’M 52 AND SO VERY TIRED OF THIS. By for now,Diana

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