Bloodsuckers: A Field Guide to Tick Bites

First hand experience from me--a Lyme disease survivor.

A couple weeks ago while on a short business trip with my husband, I got back from a long hike in the Alabama woods where we were staying, sat down to write and began noticing an ache in my right arm about an hour later. l looked down and found a tick lodged there.

Gross, right?

Well, those of you who know my story also know that I have been ill for many years with Lyme disease and some other tick transmitted diseases. It has been a long haul for me to get to the level of health I have attained, and looking down to see a tick enjoying a meal off me was more than flesh and blood could stand.

I was understandably shook up for a bit, but I went to work on the knowledge I have acquired through years of painful experience, and I think I can say that all’s officially well that ends well.

It occurred to me that, since I am unfortunately experienced on this subject and since it is officially tick season all over the states, I should put together a field guide, if you will, to the nasty, blood-sucking varmints. This piece could also be titled, “How to get bit by a tick and not unwittingly suffer years and years of ill health and spend vast amounts of time and money getting the run around by the medical establishment, finally getting diagnosed properly at the ripe old age of 32 and then spending a further eight years and vast amounts of money getting well.”

But that’s a really long and oddly specific title, so that’s why I called this “Bloodsuckers,” instead.

A little background:

From the age of about five until fourteen or so, I lived in rural Michigan on the campus of a Christian ministry called Freedom Farm. It was home to a church, a small Christian school, an even tinier Bible college, a radio station, and staff housing. I was one happy kid there. It was safe, quiet, beautiful and full of wonderful places for kids to play—grassy fields, stands of pine trees perfect for climbing, woods to wander in and explore. That part of Michigan is also Tick Grand Central Station. Rural Michigan, in general, is Tick Grand Central Station. I pulled ticks off of me countless times in the years I lived there, sometimes in the morning upon waking up off my forehead or behind my ear.

This was back in the 90s and Lyme disease wasn’t much discussed or worried about. My worries about ticks was that they were disgusting, and that was the extent of my concern. It the late 90s, I did finally hear about Lyme disease and that it came from tick bites, but the official word was that Lyme was rare and not easy to get.

Nevertheless, I was plagued from a pretty young age with odd symptoms that really aren’t typical of young children. One of the big ones was intense, burning pains in my hips, knees and ankles that would sort of radiate into my muscles. They’d come from out of nowhere, without rhyme or reason and most often in the middle of the night, waking me out of a sound sleep. I’d go limping and crying into my parents’ room and then from there into a hot bath. It was the only thing that would take the awful pain away. It could be so intense, at times, that I found it difficult to walk up the stairs from my room to get help.

Our family doctor attributed this to growing pains, but in hindsight, we probably should have requested a better workup. Though, at that point in time, the culprit wouldn’t have been found anyway most likely

So, strange symptoms would come and go throughout the years. After we moved to Kalamazoo, my symptoms remained. In my twenties, things got a lot worse. I had a lot of chronic back and neck pain, lots of gut pain, crushing fatigue, anxiety and depression etc… By the time I married my husband, things were sort of at a tipping point. About two years into our marriage, my symptoms had become so disruptive, I was in bed more often than out of it. I had developed interstitial cystitis, my gut was constantly in turmoil, I had pretty terrible acid reflux no matter what I ate to the point that my esophagus would go into spasms if I swallowed something the wrong way, I had insomnia, I got sick with respiratory infections constantly, and a lot of other strange things were happening. One year, for instance, the Achilles tendons in both of my ankles went out at once for no reason whatsoever, and I hobbled along as best I could for a couple months until it went away.

After much prayer, my husband and I discovered a doctor that seemed like she knew what she was doing and we booked an appointment.

Now it’s not like I’d never gone to the doctor before for all this. It’s just that nobody could ever figure out what was wrong with me. I had a lot of autoimmune markers throwing up flares in years past. I had even been “treated” for Lyme because a more naturalistic doctor suspected I had it even though I had never tested positive for it. But his regimen of herbs didn’t do a whole lot for me, and I was a single young woman at that time and poor as church mice to boot. I simply didn’t have the money to keep buying the herbs.

The problem was, and sometimes still is, that doctors do not understand the disease. At all. The official CDC guidance on tick bites, testing, and illness are inadequate and inaccurate information abounds.

The greatest complicating factor in diagnosis, for instance, is the time between the tick bite and the onset of symptoms which can be as much as thirty days for any acute symptoms if acute symptoms like fever and flu-like symptoms ever appear before the more chronic Lyme stuff develops such as chronic joint pain and neurological/psychiatric problems.

And then there’s the size of the tick—most black legged deer ticks are the size of a pin head. It’s more than possible to be bitten, never know it, never notice a rash much less a bull’s eye rash, develop fever and chills a few days or even weeks later and think you just had a light case of the flu and recovered. It’s very easy to fail to put the tick bite and the later occurring fever and chills together. Meanwhile, the bacteria which causes the illness is left to roam around in your body creating havoc of all sorts with nobody ever the wiser. The bacteria which causes the illness is often referred to as a stealth microbe. It’s old, it’s smart, and it does what it needs to survive. It is masterful at evading the immune system, shapeshifting from spirochete form into a more dormant cyst form as needed to stay alive.

To make a long story short, I did have Lyme disease which I acquired in childhood. I also had Rocky Mountain Spotted fever and mycoplasma infections, both of which can be transmitted through tick bites.

I went through several rounds of antibiotics and several delightful Herxheimer experiences while the bacteria died off and made me feel like death warmed over. Then I had to deal with healing all the damage done to my body by the illness over the years. There were special diets, food restrictions due to sensitivities I had developed due to inflammation in my gut, bladder damage to heal, thyroid damage to heal, gut damage to heal, immune system damage to heal and so on and so forth.

I am much better these days, but it took years to get where I am now.

So, is it gone? Well, probably not. I had it for so long before it was discovered, that total eradication is unlikely. Recall that Lyme can shift from an active spirochete form to a dormant cyst form to evade the immune system and antibiotics. If conditions are favorable, the remaining cyst forms could become active again. I will need to be always alert and on my guard for the return of symptoms and protective of my overall health.

But I am so much improved that I can say it’s under control. “Remission” is a better word for what I have experienced than “cured.”

Which brings me to my field guide. I would love for all of you to avoid getting Lyme disease and going untreated if possible. Late treatment is time-consuming, exhausting, and expensive. Early detection and treatment is a better deal all around. You want to catch it early.

Don’t Get Bit

Preferably, you want to avoid being bit by a tick at all. This can be hard to pull off, but there are a few things you can do to decrease your odds of a tick bite.

A lot of folks will tell you to only go outside covered in clothing from head to toe in long pants and long sleeved shirts with tape around your pant legs. But this is not practical or reasonable, especially if you live down south like I do. The heat, alone, will put a stop to any of those notions. Also, you’ll still end up with ticks slowly crawling up your pants looking for a nice hunk of skin to sink their nasty selves into, anyway.

A better idea is to use permethrin spray on the clothes you most often wear outside in your yard or out on a hike. Permethrin is a chemical imitation of a compound in chrysanthemums that is toxic to the nervous system of ticks and a wide variety of other pests. Once they come into contact with clothes and other items treated with it, they may take a short ride on your clothes but will quickly fall off. (Unfortunately, cats are particularly susceptible to its effects as well. So, exercise caution if you have feline friends.)

Permethrin is, in fact, a pesticide.

I know we crunchy people don’t like pesticides. But I’m going to be straight with you: My need to be crunchy at all has come about because of ticks and the diseases they gave me. I have spent thousands and thousands and thousands of dollars to get better. I am better, but the marks remain.

For instance:

• I can’t conceive (been trying for nine years of marriage.)

• I have to be extremely careful what I eat to keep symptoms under control. My food is expensive because I can’t just eat anything.

• I have to be on several maintenance medications and supplements. These are all fairly expensive.

And there are more after shocks I could share with you.

“But,” you might say, “you got a tick bite anyway!”

That’s because I didn’t use Permethrin on my trip to Alabama. I know. Shame on me. It didn’t occur to me because for the entire time I’ve lived in South Carolina, I haven’t encountered a single tick. So, I was lulled into a false sense of security. No longer. I’m getting me a nice big bottle of the stuff and I will use it liberally the next time I go on a hike or get into tall grass and woods.

If I had known about permethrin when I was a little girl and had the opportunity to choose the possible side effects from that versus all the crap I’m currently dealing with now, I would have jumped at the chance to spray it all over my clothes and shoes.

But that’s a personal risk/reward analysis you’ll have to make for yourself.

I can say that an application of this chemical could possibly save your life and your kids’ lives. Yes, unfortunately people do die of Lyme disease every year.

Read further on Permethrin and how it works at the link below.

What to Do When You Get Bitten

In spite of best efforts, however, you are going to get bitten. Almost assuredly, especially if you love the great outdoors as much as I do.

Don’t panic. There are many tools at your disposal.

First, don’t destroy the tick! If you find a tick on you and feeding, that is the most obvious and understandable knee jerk response. But I really recommend that you carefully and slowly remove it with tweezers so that the head doesn’t get left behind and embedded in your skin, than put it in a zip lock bag.

Next, go to tickreport.com and order a tick report. For 60.00, this company will identify the species of tick that bit you and genetically test it for the most common tick transmitted illnesses like Lyme, babesia, etc…

The identification of the tick is especially important these days as it can be really helpful to know whether you’ve been bitten by a black leg tick (deer tick) or a lone star tick. Lone star tick bites carry the risk of developing alpha gal syndrome which can make you extremely allergic to red meat and other animal foods.

You can also get more thorough testing done on the tick, but it’s more expensive. I think the basic test is sufficient. This is what I did.

Tickreport.com is extremely fast with their turnaround. I sent my tick to them on a Monday and had my results by Friday. You’ll be happy to know that the tick that bit me did not carry any of the bacteria we tested for. No Lyme species, etc… I was really relieved.

ADDENDUM: Since writing this first draft, I had another appointment with my Lyme doctor and told her about the tick report results. She was unimpressed. “That’s what they say…” So, I think it’s still advisable to act as if the tick was carrying Lyme, regardless of the results. However, if you do get a positive result and discover that the tick was carrying Lyme and/or related bacteria, this could be helpful proof to have on hand and make access to good treatment less of a headache.

What to Do if the Tick That Bit You was a Carrier of Disease

You need to get on antibiotics right away.

You don’t need a positive Western Blot test. (You likely wouldn’t be positive anyway. The tests are not sensitive enough in the early stages.)

This is the tricky part. A lot of doctors will not take this as seriously as they ought. They don’t know that they should. They might recommend watchful waiting for symptoms to appear or just shrug it off in general, especially if you never got a bull’s eye rash. (I’ve even heard of doctors that won’t do a thing about it even if you do have a bull’s eye rash! If you don’t have a fever, they figure you’re not sick.)

Again, we crunchy people don’t like taking antibiotics for legitimate reasons.

What can I say? Just get over yourself and take the antibiotics.

You can fix your gut health relatively inexpensively. I did. My gut is massively improved, so much so that I don’t have acid reflux, constant pain, bloating and distention anymore. But I’m still left with the after shocks from Lyme.

Just take your antibiotics!

Just do it.

You’ll need to take something in the doxycycline family. My doctor had me on minocycline as it went easier on my gut than doxy. If you can’t get your doctor or your kids’ doctor to prescribe doxy or something in that family, you need to find a Lyme literate MD who will treat you responsibly.

I have a database of such doctors for you at the link below, and the overall website is a wealth of ACCURATE information concerning tick bites and Lyme disease which I cannot say of the CDC.

Here’s another good database of Lyme literate MDs:

So what did I do once I removed my tick? I called my doctor right away who has already treated me for my Lyme and related illnesses, without a moment’s hesitation, she prescribed a course of minocycline. This is how every doctor should respond to the news that you have been bitten by a tick.

It is a shame and a disgrace that most doctors won’t.

I began my course of antibiotics the day after my tick bite because that was a soon as I could get them, and I completed them even though my tick did not test positive for the bacteria I was looking for.

Why?

Because I’ve been through this before, and I didn’t want to wait for the tick results because of the past years of suffering I’ve already been through. I’m not doing that again.

The week and a half I was on the antibiotic wasn’t great and my stomach is still recovering. However, I am well on my way to feeling back to normal again. I also began a simple but effective probiotic you can pick up at any Walgreens: Floristor. I took that between morning and evening antibiotic doses at least thirty minutes after or before the dose. You don’t want to take them at the same time, or the antibiotic will just kill the probiotic.

I highly recommend taking probiotics along with antibiotics and any good Lyme doctor will tell you the same.

ADDENDUM: When I said the week and a half on the antibiotics wasn’t great, I was understating my experience. I suffered brain fog, a wicked depression that came out of nowhere, fatigue and gut disturbances. My doctor’s working hypothesis based on her many years of expertise treating patients with tick bites, is that I had yet another Herxheimer response either to old Lyme pathogens or something I picked up from the new tick bite. The reason she believes this because a couple days after I finished my course of antibiotics, the depression lifted as quickly as it came, in a matter of a few hours. My brain fog disappeared and my gut gradually normalized. The lesson in all of this is that it’s always a good idea to assume you’ve been infected with something if a tick bites you.

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I hope this was helpful to you.

As a closing thought and a counterpoint to all of this caution and precaution, don’t forget that living fully means embracing a certain amount of danger. You can avoid all danger and risk and then…die inside. I wrote about this a couple years ago in this piece:

It’s a hard balance to strike. I should know. The song, “The Rose,” speaks of this. The middle two stanzas are appropriate here:

It's the heart afraid of breaking
That never learns to dance
It's the dream afraid of waking
That never takes the chance

It's the one who won't be taking
Who cannot seem to give
And the soul, afraid of dying
That never learns to live

I guess what I’m trying to say is that it would have been a greater tragedy for my parents to have swaddled me in bubble wrap even if it meant I never got Lyme. I had a beautiful childhood, running through the grass and climbing trees. Sometimes, I can almost feel the wind whipping through my hair as I remember running barefoot through the weeds.

If someone had told me I could stay indoors all my life and never get sick, or run around like a wild Indian in God’s beautiful outdoors and suffer later, I wouldn’t have made the trade off. Life is not less valuable or beautiful because of suffering.

I definitely would have taken a can of Permethrin though.

That’s all for now. Until next time, folks…

If you enjoy what I write…

P.S. My publishing schedule will look a little different next week. In honor of remembering our Lord’s death and resurrection, I will be recording and releasing one song on Good Friday and one on Easter Sunday. I think you’re going to love them both! I know I do.

After that, I’m taking a month off. I have been dealing with a number of personal griefs and disappointments lately, and I need a break to recover and focus on some other things.

I also have a concert I’m participating in and I’ll be traveling to a niece’s wedding out of state.

For now, the plan will be to resume regular publishing on Monday mornings in mid May.