Sorting out truth and myth is itself one of the keys to overcoming Lyme disease. And it’s not easy to do because considering how prevalent the disease is, the medical community hasn’t given it the research priority it deserves.
So a lot of my myth busting comes from many hours of reading the information that does exist and from personal experience.
Myth #1 – There’s no such thing as chronic Lyme disease. The grandaddy of the myths. My experience is that I received a clinical diagnosis of Lyme and received lengthy treatments of both antibiotics and antibiotic herbs for Lyme. More than a year after that, I tested positive for Lyme and several co-infections. That’s not iron-clad proof, but it sure looks a lot like chronic Lyme. Scores of others have similar tales.
Some doctors still hold to the “no such thing” mantra, while others have accepted recent science that shows Lyme bacteria can persist after treatment. So maybe we can call it “persistent Lyme” and stop arguing about it and have everyone place their attention on dealing with the problem.
Myth #2 – Long-term antibiotics don’t work for persistent Lyme. A recent study published in The New England Journal of Medicine said that three months of antibiotics were not effective in treating Lyme in patients with lingering symptoms. Other major studies done in past years show mixed results. Some say long-term antibiotics do help, some say they don’t.
From information gathered from books, articles, and interviews by leading Lyme doctors and from reading testimonials, it seems the truth is that long-term antibiotics can, and often do, work. There are also many instances when they don’t work. It seems to depend on many factors, such as the practitioner’s skill in choosing the antibiotics, the patient’s compliance, and the patient’s willingness to work on many other things such as diet optimization and detoxification.
Myth #3 – Herbs don’t work for persistent Lyme. Shortly after I got sick, a naturopathic doctor told me “Herbs don’t work.” Well, I think he was wrong. After much study into the matter, and after using a lot of herbs myself, I’d say herbs do work for many people, but it helps if they are extremely high-quality herbs, chosen by expert herbalists. It can also help if they are administered by qualified practitioners, though doing it yourself often works too. Fortunately, the Lyme community has access to the Cowden, Buhner, Zhang and Jernigan herbal protocols, along with other outstanding herbal products from Byron White, Beyond Balance and many others.
Myth #4 – It costs too much to eat a healthy diet. It’s probably true that crappy food is usually cheaper than healthy food, but with a bit of time and effort, good food can be found at a good price.
Health experts agree that vegetables are the centrepiece of eating well, and many people have the option of growing their own. Finding a local farmer’s market or a good fruit and vegetable store are other good ideas. Fortunately, many of the vegetables best suited to Lyme patients, like garlic, onions, broccoli, and cabbage, are cheap. I eat three veggies with my evening meal and they cost about a quarter a serving.
The two pieces of fruit I eat daily cost a bit more than that, but they too are cheap if you shop around and pick out specials. I also choose the smallest pieces of fruit in the bin, which reduces cost and sugar intake. I further save money by snacking on sunflower and pumpkin seeds, which cost about 25 cents a handful (note: all prices mentioned in this post are in Canadian dollars).
Choosing organic food is optimal, but that often is too expensive for many people. Still, keep an eye out for specials. I’ve often seen organic produce on sale that costs less than the same store’s conventional produce.
Myth #5 – It costs too much to use natural cleaning and personal care products. Reducing your toxic load is a key factor in fighting Lyme. Most commercial cleaning and personal care brands contain many toxins, so it makes sense to look for natural alternatives. The Environmental Working Group’s website, ewg.org, is a good place to find substitutes.
But can you afford them? Probably yes. I made the switch, and it costs me roughly $100 a year. To do that, I needed to shop around a bit. Doing this, I’ve found it much cheaper to buy supplies at supermarkets, which have bulk buying power, rather than at health food stores. Also, I’m fortunate to be near stores which sell the Nature Clean line of products, which I find to be reasonably priced, effective and truly green.
Myth #6 – Gluten free is unaffordable. Many Lyme practitioners tell patients they need to eat gluten free in order to get well. Then the patients go to the supermarket and see the prices on foods marked gluten free. That makes them feel about as sick to their stomach as the gluten itself might make them feel. The answer to this dilemma? Eat basic foods that don’t have gluten in them. There are lots of them, such as vegetables, fruits, fresh meats, fish, and nuts and seeds. I find I can eat my fill of these sorts of foods for about $10 a day.
Myth #7 – Some people are too far gone to ever recover from Lyme. Let’s just say I believe in miracles. I’m one of those people everyone had counted out. I had been housebound, spending about 23 hours a day in bed, for seven years. During that time, it would be a good week when I could talk on the phone for 20 minutes and watch TV for half an hour (that’s over the span of the entire week). I wrote about how I emerged from that hole in a post back in March called “5 things that got me out of Lyme hell”. The moral of that story is never, ever, give up. You never know when something totally unexpected will happen to lift you out of the pit.
Graphic: Nevit Dilmen