My elbows and knees were aching last weekend and I didn’t think about it too much. When a weird tingle got involved and I felt it spread across my shoulders and upper arms yesterday, I remembered my old dance partner – chronic Lyme Disease. It’s been a couple years since we went waltzing.
It may be a flare up, it may be a new bite, and I’ll schedule an appointment to see a doctor for the ubiquitous and fairly pointless Doxycycline, and order a new glass vial of Teasel drops to help the antibiotics push it back. But even as I slowly realized what I was dealing with again, I realized that I hadn’t realized. And what bizarrely joyful feeling that is – for there was no, ‘no realizing’ for several years.
Real gardening is dirty work – and in this part of the world it comes with the knowledge that a tick check is required after every shower.
It made me go back and look for an article I’d written about Lyme Disease years ago — ten to be precise — when I was somewhat at peace with the little cross I’d carried for at least four years. Reading it and recognizing how far I’ve come in building my immune system since then is a terrific feeling.
That in mind, I thought I’d share it now below for those of you who also deal with Lyme Disease and feel like it might rule your life forever. It’s a badly understood disease (one of several tick borne diseases), and shamefully, sufferers are still dealt with poorly. Long before Long Covid there was Lyme.
But I don’t let it stop me from a life led joyfully outdoors. Take strong precautions against tick bites, and be your own advocate for testing and treatment as quickly as possible (only 30% of people get the obvious ‘bulls-eye’ symptom from a bite) — but I hope you won’t let the fear of it rob you from the joy of what we do everyday as gardeners.
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A Little Litany About Lyme
4/20/14
Today I dug three small holes to plant willow saplings. One more was planned, but halfway through what should have been a minor activity, I gave up – surrendering to the flare up of swelling in my hands, knees and ankles, and a really inconvenient desire to sleep for the next three hours. As I put down the shovel and started toward the house, I thought about other gardeners and outdoorspeople perhaps struggling for the first time with such symptoms, and thought that this week, with the grass lengthening and tick populations burgeoning, I would share my experience.
Four years ago I went to the doctor with mysterious symptoms. My joints were so swollen I could not bend over or grip a pencil. Lyme Disease was suspected, so the most basic of tests were run with negative results. And there I made a mistake that I have lived with ever since – I did not insist on further, more comprehensive testing, and sadly, neither did my doctor. My symptoms got better then would reappear six months later. After a year of feeling run down and not myself, I paid out of pocket to have a better test run. Positive this time….and positively too late to treat.
Lyme Disease is endemic to this region of the world; and gardeners and people of the outdoors are constantly being warned to be on the lookout for its tiny carrier – the deer tick. However, as one who has removed microscopic offenders from various body parts, I am more than aware that ticks will come and go without the host knowing anything about it. It is far better to be aware of all signs of this illness and advocate on your own behalf.
For many, the battle with Lyme Disease has ceased to be a medical one. I have done my sixty days of doxycycline…twice. According to the establishment, I, and others like me, are cured – regardless of persistent, obvious symptoms to the contrary. Of course, there are highly respected doctors who are still searching for answers, but there are also charlatan quacks out there happy to take one’s money.
I’ve ingested herbs and put thousands of drops under my tongue. I’ve juiced more than Jamba, and juggled restricted diets with the dietary needs of a family. In the end, my work is to build up my immune system and give my body the best of food and exercise – and to realize that flare ups will happen. I will feel terrible, and then I will be better.
Perhaps the most difficult thing about Lyme Disease is something that will only be understood by future generations. At some point I have no doubt that there will be a 100% cure. A pill…a two week dose of some miracle drug that forces the Lyme spirochete out of the tissues and out of the body…for good. I’ll be one of the first in line. And at that time, people will look back and think about a father, or a cousin, or a friend, and realize that they weren’t crazy, or eccentric, or seeking attention – that they were just dealing with something that didn’t yet have an answer.
It’s my little weakness. It might be yours too. On good days I consider it a badge of honor for the life I lead outdoors. On bad days I write terrible poetry and read website horror stories until my eyes cross. Then I stiffen my upper lip and remember that there are those out there who are worse off than I. Besides, who knows if I’d be taking such good care of myself without immediate negative consequences guiding my decisions.
It’s tick season almost everyday, and you’re gardeners. Don’t dilly-dally if you’re having odd symptoms – acting quickly is your best chance of a successful cure.
Marianne, thanks for your article! I’m a Lymes case from 15 years ago, luckily they diagnosed on my second visit to a doctor, and 30 days of Doxycycline was all I needed to lick it. I knew something was major wrong when my joints would not allow me to lift a glass of water to my lips. I’m near Chicago, but I’m certain I got the bugger in Wisconsin. Never saw him nor the bullseye rash, but I was messed up for a couple weeks.
And I remain vigilant, with all my trips to my WI property, in fact, just pulled a tiny tiny tick off my belly two days ago. Mind-boggling what havoc those little f’ers can cause. Thanks again, sorry you are dealing with Long Lyme’s. Be well…
My husband also had a decent time with it – responded well to antibiotics that he got in time.
I live in one of the Lyme ‘capitals’ but I also got it out of state – a tick bite at Point Reyes, CA that I actually knew about! I wish I’d been more of an advocate for better testing in light of that — that’s why I’m re-running this post from years ago. – MW
Marianne — What a great reminder to all of us. Years ago, I suffered from Anaplasmosis, another of the MANY bacterial infections from tick bites. My doctor didn’t even wait for the test results when he saw me, and gave the prescription for antibiotics. He said, if the test comes back negative, we can discuss it. The test did come back negative, and the staff member who called said I am fine and there’s nothing wrong with me. But the doctor was wiser, and knows (the staff should know this as well) that the tests are not perfect and that there are frequent false negatives as well as false positives. Your decision to get retested with a more accurate test is good advice — our symptoms don’t lie – when you feel miserably sick, you will know it’s real, even if there are plenty of ignorant people who will deny it. Keep well!
Good for your doctor! It’s one thing to hand out antibiotics to those who simply have had a tick bite, but to ignore obvious symptoms because faulty tests are negative, is malpractice in my opinion. Glad you had a smart doctor on your side. – MW
Hi Marianne, I don’t know if you remember last fall as we strolled Chanticleer Gardens. I barely remember because I was desperately sick. I wandered off and kept sitting down. I was in such pain. Later, at home, I was diagnosed with Alpha-gal syndrome, another tickborne disease often called the red meat allergy, and mast cell activation syndrome probably born out of AGS. As Dr. Scott Commins has said, “Ticks change you.” That they do. I appreciate you writing this. I try to educate the public about tick protection too. Oklahoma is just now dealing with some of these. We are the new hot spot. Best wishes to you. I’m glad you feel better more often than not these days.
Hi Dee – you poor thing. I had no idea you were suffering that night (which is one of the issues with these tick diseases – one looks normal but feels like curling up into a ball). I very much hope that you are able to progress along the road to steady healing. Educating others in OK from the wonderful platform you have is doing very good work indeed. There’s no playing around with some of these bacteria. – MW
I’m so sorry to hear you are suffering again. As an M.E. sufferer I also sympathise with the weird medical blindnesses.
And this piece came as a timely warning to Charles, who was, strangely, planting willows in our deer ridden fields the day before yesterday. He acknowledged to me that he has been too careless about it. Thank you. Xxx
‘Weird medical blindnesses’ is a good term Anne. I still don’t understand why we are so behind in treatment and/or at least recognizing that the current standard protocols as dictated by insurance companies are woefully inadequate. Most people here dealing with it are dealing well outside their insurance with bills of thousands of dollars.
And very glad to hear that Charles will be more vigilant. It’s so easy to forget- I do it myself. – xM
I am so sorry to hear you are having a relapse. It is a terrible disease to deal with. Unfortunately, there are 3 spiral organisms that can be the cause. Getting an antibiotic before the one you have is identified is a major problem. If you have one not killed by the antibiotic you were given, it hides, staying dormant. The patient, thinking they are cured, goes about life until the hider comes back to life.
I have a friend who has been in bed for 17 years, 15 of which she has had around the clock care, from Lyme improperly diagnosed initially. Living in the woods she was exposed often enough until the body just could not recover sufficiently, her muscles unable to carry and weight.
Hoping for your improvement quickly. Thanks for Ranting on the subject. There are so many people and doctors who don’t understand the disease. Docs were so unaware in VA that the legislature passed a bill requiring doctors to get educated about it. They of course were mad at being told to do so, but the people had pushed for it. Chalk up one for citizen activity!
I can relate
“… I hope you won’t let the fear of it rob you from the joy of what we do everyday as gardeners.” The fear of ticks, which latch on to me every chance they get, has indeed robbed me of gardening joy. I’ve basically given up gardening and it’s put a huge hole in my life.
In medical school back in the 1980s we on 90 minute lecture just on tick borne diseases.
In Virginia I might add