7 Myths That Can Steal Lyme Recoveries

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 they have to be extremely high-quality herbs, chosen by expert herbalists, and, preferably, administered by expert practitioners. 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 22 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

Anatomy of a Lyme flare

Ooooo. My stomach. Ooooo.

I’m lying in bed feeling as if someone has poisoned me. “Okay,” I say to myself. “What was it this time?”

Nearly everyone with Lyme knows all about flaring. Some call it a die-off reaction, while optimists call it a healing crisis. Others call it herxing, a short form of the official name of this not so little piece of hell, the Jarisch-Herxheimer reaction. Jarisch and Herxheimer were two dermatologists back in the day who get credit for discovering it. Thanks, guys.

I’ve had my share of flares, and more often than not, they give you a fair bit of time to flake out in bed and wonder what on earth caused it to happen again.

Through the latter months of 2015, things had been going well on my Lyme healing journey. A few not so hot days here and there, but no real flares. Then came the night of Jan. 7.

I woke up around 1 a.m. feeling a bit nauseated. No big deal, I thought. I’ve woken up feeling queasy many times. It nearly always goes away quickly. But then I woke up again at 2 a.m., and this time it was really bad nausea.

It kept getting worse, and I scanned the room to see where the barf bucket was in case I couldn’t reach the bathroom in time. The nausea continued all night.

Fortunately, I didn’t have to empty my stomach’s contents, but when I got up, there was a stabbing pain in my neck to add to lingering gut distress.

My flares usually last only a day, so I was hoping that all would be well later that afternoon. But it wasn’t. Was this a several day herx, or even one of the dreaded ones that last a week or several weeks?

The next few days I spent a lot of time in bed, and added shoulder soreness and gas pain to my symptom list.  On day three I tried going for my usual walk, but got about halfway and turned back. Mark this one down for a week or more. Grrr.

It felt like the flu, and this time of year a lot of that is going around. But I didn’t have any fever, and none of my roommates, friends or others I’d been in contact were sick, so Lyme herx was the likely offender.

So for a week I lie low, only doing what I have to do, and resting a lot. I don’t feel that bad any more, as long as I don’t do much of anything.

On day eight, I feel a lot better and figure it’s time to start upping my activity level – get back to my regular exercise, catch up on some errands, that sort of thing.

Mistake! For me, the cardinal rule for flare recovery is being totally honest with myself and making sure I’m really ready to get back into the normal routine. It’s like spraining an ankle. If you try to run on it before it’s ready,  you sprain it again, and you’re back to square one, or worse.

So I overexerted myself and the next day I felt lousy again. Not much in the way of symptoms beyond a bit of nausea, but I had that Lyme malaise that’s so hard to explain to doctors. Mega-blah.

This pattern continues for another week or so, before finally I feel human again and can get back into my old routine.

That adds up to a two and a half week herx, so I had a lot of time to figure out what went wrong. If I could determine the problem, then maybe I could avoid it happening again.

Not an easy piece of detective work. The body is so complex, and Lyme so complicated that I run about 50 theories through my head, then give up and pray and seek divine guidance. I’m not sure if I got any of that, but here’s what I think happened on Jan. 7.

In retrospect, I can see that it didn’t just happen all of a sudden. A few things took place leading up to the event that may have been tip-offs.

One was the weather. I tend to have most of my severe herxes in November, December and January. I think this is because it’s the most humid time of the year where I live. It doesn’t feel humid because it’s cold outside, but since there is so little daylight and no hot sun, the humidity is almost always high.

I’m not sure why this causes me problems. Maybe it’s because the high humidity allows bacteria to flourish, and I wonder if it may have something to do with humidity spikes stimulating my immune system and causing it to overreact. Whatever the case, I’ll often wake up after rain or snow in the overnight hours and feel under the weather.

And since we’re blaming climate change for everything else these days, why not give it some blame for my flare? This time of year brings even more changeable weather than usual, and the barometer swings seem to have a negative effect on me.

Some other factors may have come into play. Overexertion is one of the most leading causes of flares, and I may have been guilty of that. But while being very careful about what and how much you do is so important in trying to overcome Lyme, few people realize it’s just as important to watch diligently what medications and supplements you put into your body.

In most cases of persistent Lyme, the bugs are hiding out in various parts of the body. You want to chase them out of their holes and kill them, but you want to do it when it’s advantageous for you. If you’re feeling horrible, it’s usually not the time to stir the pot.

It’s kind of like fishing. As long as you take the same meds and supplements at the same time every day, the bugs know what’s coming. But when you alter the routine, you can trick them, and out they come into the daylight where you can kill them.

Looking back at my journal, I see I had a B12 shot on Jan. 4. And while I used to have these injections regularly, now I have them every now and again with no fixed schedule.

For the most part, I feel these shots are beneficial, but they are a leading cause of my flares. I’m not sure if they’re stirring up Lyme or other microbes, but there’s no doubt that on infrequent occasions they cause reactions that slow me down for a week or more.

Low-dose immunotherapy may have also led to the herx. I’ve been trying this new therapy, which aims at getting the immune system to deal more efficiently with Lyme, since September.

It seemed to be helping at first, but lately I’m not sure what it’s doing. I see in my Facebook LDI for Lyme group that while the treatment has helped many people, many others have had severe flares.

The other suspect is grape seed extract, a seemingly harmless substance. Made of, you guessed it, grape seeds, I find this supplement reduces inflammation. When I take it, I always do so before bed, but on the afternoon of Jan. 6  my left knee was aching a bit. Since I try to avoid taking NSAIDs whenever possible,  I reached for the grape seed. It may have stirred something up I wish had stayed dormant.

That’s the best sleuthing I can do. Maybe I’ve guessed the problem and maybe I haven’t. Now I’ll make renewed efforts not to overexert myself and to be more careful about what I put into my body.

But like I said before, Lyme is a complicated beast and sometimes you can do all the right things and still have a flare. Not a very happy thought, especially when you’re lying in bed clutching your gut and squinting to see the licence plate of the truck that just ran over you.

 

Photo by Monica Holli. Accessed through http://www.Creativecommons.org

 

Intro to Lymetips.com

Lymetips is about sharing things I’ve learned from my struggles with Lyme.  I got the full meal deal with this disease- several strains of Lyme, several coinfections, several viruses, severe candida, etc., etc. So whatever you’ve faced, I’ve probably faced it too. At one point, I asked my doctor if I was dying. All she said was, ‘I’m not sure.’ As you probably guessed, I didn’t die, and while I’m not fully recovered yet, I’m waaayyy better than I was.