The Ghost of a Dread Past

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The return of my Lyme symptoms was an unwelcome realization. It came on one morning, just as my original Lyme symptoms had, when I woke up and could not bend my left knee. This was how it happened when I first had Lyme but it was a long time before I knew that what was wrong with me was Lyme Disease. What I knew about the disease back in 2001 was virtually nil (I thought it caused achy joints and that it was more like a flu that would eventually go away). Since that time, I have written about Lyme on several occasions and my research and personal interest in the disease has practically earned me a doctorate in the subject. Files stretch the length of my attic. Simultaneously, public awareness has been raised with films such as “Under Our Skin,” (http://www.underourskin.com/) which I highly recommend if you want a crash course in what it is and what happens in some of the more severe cases of Lyme. Mine was one of the more severe cases but it was aggravated by my own ignorance (there are sound reasons why the public is largely unaware of the gravity of this disease. Don’t go on the internet, which I did, if you want a clear picture. There is a host of disinformation posted there and it all results in a mind scramble). This confusion was complicated by my physical weakness and a lack of health insurance. So I went it alone. But since, I’ve learned a lot, written an article for Yankee on the subject (posted on my website), and have been symptom free for probably four years now. Until a couple of months ago. This time, I knew what the unbending knee was telling me. Along with it came the telltale symptoms of extreme fatigue and painful body aches. My intake of Advil escalated. These symptoms were nothing like my full-blown Lyme experience but it was surely the ghost of a dread past.

At its core, Lyme is an immune system disease and I have known for some time that keeping my immune system in balance was essential. But this past summer and fall, I’d been on the road a lot, doing talks and readings from my new book. It’s been an exciting time but I’ve lost a lot of sleep as I return home past midnight and rise before 5 to take care of what hasn’t been taken care of in my absence. Eating on the road is usually touch and go but, if prolonged, it is ultimately, a disaster. So it was a train wreck of circumstances. I could have predicted this if I’d thought about it. The pain was not limited to my knee but my back and my legs were so inflamed that, at times, I could barely walk. Sitting was my only option.

My sister happened to be visiting in September. She is an extreme athlete and had been telling me for some time about her new gluten-free diet. Because of all her intense physical exercise, she constantly experiences pain. She told me that eliminating wheat from her diet had remarkably eased her symptoms. My situation with my health insurance had not improved at all. In fact, my premium had been raised from about $700 a month to $900 a month — that is with a $5,000 deductible. Who can afford payments like that? Further, paying those premiums allows no possibility of seeking medical help, since, once the premium has been paid, there isn’t any money left to pay the doctor. I don’t want to get into the plight of a free-lance writer or the bleak situation of health care in this country.

When I was first diagnosed with Lyme, I eliminated sugar from my diet, which is highly recommended. And effective. Then I gave up alcohol. Not a problem. And so, I knew it wouldn’t be so hard to eliminate wheat. I can’t speak for long term results but after two weeks without wheat, I have to say, I feel heaps better. In fact, I am amazed. The results were immediate. Who knows why it worked, and it might be fleeting but, for now, I’m very pleased with the results.

In that first week, I came across a recipe in the newspaper for lasagna made with butternut squash instead of noodles. I happened to have a bushel of that, my most favorite squash, sitting on my porch, waiting to be carried down to my root cellar. I set to the task, made a pan of it and enjoyed it for lunch and dinner. With lots left over (and another recipe for polenta pizza that I hadn’t made in a while), my first gluten-free week was a breeze. I have tweaked the recipe a bit and share it with you now. Even if you don’t have Lyme, which I sincerely hope you do not, try it. I think you’ll like it.

Butternut Squash and Kale Lasagna

  • 1 large butternut squash, peeled
  • 1 bunch kale
  • 1 large onion
  • 3 cloves garlic
  • 2 tablespoons olive oil
  • Salt and pepper
  • 2 cups diced tomatoes
  • 1 teaspoon dried oregano or sage
  • 1 8-ounce container of part-skim ricotta cheese
  • 1 cup grated Gruyere, mozzarella, or Fontina cheese

Preheat oven to 350.

Peel the squash, cut it lengthwise, and then scoop out the seeds. Place the halves face-down and cut lengthwise into ¼-inch thick slices. Make sure the slices are thin enough. Remove and discard the stems from one bunch of kale. Chop the leaves into small pieces.

Dice the onion and mince the garlic. Saute in the olive oil until soft. Add the kale and cook, covered, for 5 or more minutes. Add salt and pepper.

Lightly grease a 13 x 9 inch baking dish or large cast iron skillet. Cover the bottom with an overlapping layer of squash slices. Sprinkle with salt and pepper. Spread with the cooked greens over the squash and add another layer of squash slices. Spoon on the ricotta and spread to a layer, then cover that with the tomatoes and the herbs over this layer. Add a final layer of squash. Top with the grated cheese. Bake in preheated oven for one hour. Pierce with a fork to make sure the squash is cooked through. If not, cover with foil (to keep the cheese from burning) and bake until the squash is nicely soft and the cheese brown and bubbly on top.

  • Anonymous

    Edie—this is Ruth (Bixby) Bray—I found a YANKEE A FEW MONTHS BACK—did leave a comment—if there was a reply I missed it. We met years ago when as a Home Health Aide I met you at our first Hospise meeting in Salamanca & you spoke to us. I have since retired but I still do some as a Hopice volunteer—mostly in line with Fund raising. I’m really OLD now–& other than some miserable siasica I keep moving. Lost 1st husband some years ago & have remarried. You have spent so many years as a widow. I know you have an enjoyable life in you delightful home & Yankee. You did know we were traveling and stopped by (few years ago now)? Don’t travel only “To TOWN ” now. “I’m awfully well for the Shape I’m in” Keep up all your good writing— Ruth rbray2@stny.rr.com

  • Anonymous

    Oh, yes, the symptoms can come and go. I have heard about an acupuncturist who specializes in Lyme and I plan to make an appointment with him. A friend who had one of the most horrifying Lyme experiences that I’ve heard of (yet) recovered but never completely until she saw this man and claims that her visits with him made the difference between being sort of well and being really well. I can’t know how she feels but she has never looked better. Your experience of your diagnosis is very common, esp. in those early years. The doctors who were studying the disease were, for the most part, RA specialists, which is one reason why the full range of the disease’s symptoms were unknown for so long. None so blind as a specialist. I also wish you good health and successful treatment, whatever you choose. I hope I’m confident in saying, you CAN get better! Edie

  • Thank you for the article on Lyme Disease. In 1970 I suffered tick bites while training in Fort Dix, New Jersey and soon after I was diagnosed with Rheumatoid Arthritis, a diagnoses we now know was incorrect. No one really knew about the disease in 1970 and it wasn’t until I was married to a doctor who became interested in my story that blood tests were taken and it was discovered that I am loaded with signs of Lyme Disease. As I type this I’m am having the same symptoms that you had and will now look further into treatment. I didn’t know, until I read your article, that the disease can be persistent. I wish both of us good health.

    Tom Sinclair, Alexandria, VA

  • I hope you get to feeling better, Edie! What a struggle you have had with this disease! The recipe sounds delicious. I love butternut squash!

  • Anonymous

    Thanks, I’ll have to check with the Yankee “blogmaster” tomorrow. I have no idea why it’s cut off like that! Stay tuned….Edie

  • what happened to the rest of the recipe? It sound like something I could make for my mom.


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