Three Lyme Mistakes to Avoid

If ever a disease could cure a perfectionist of perfectionism, it would have to be persistent  Lyme.

Is it possible for anyone on a journey through Lyme country not to make mistakes along the way? The truth is that no doctor, no patient, no anybody, fully understands this disease. With this total lack of 20-20 vision, everyone with persistent Lyme eventually falls into a pit of some sort or another.

I can think of three BIG mistakes I’ve made. All of them happened before I was diagnosed with Lyme, but was without a doubt carrying the disease. Then, I was one of countless people around the world with some dreadful illness no doctor could figure out.

Mistake one was trying to go too fast. After making the doctor go rounds for a while, I found a naturopathic doctor (ND) who seemed to have an inkling of what to do. At the end of our appointments, he’d ask when I wanted to see him next. My response was always, “How soon can we do it?”

My haste was understandable. In a very short period, I’d gone from feeling well to feeling abysmal. When I started seeing this naturopath, I was still able to work half time, but my spare time and weekend hours were spent mostly in bed. The medical doctors couldn’t find anything wrong, but I knew something was seriously wrong. My health was slipping away, and I desperately wanted to stop the slide. Now.

So the naturopath tried various treatments that might have worked better if I’d given my body the time it needed to detoxify. As it was, I was pulling more garbage out of my system than my system could handle, and things got worse instead of better.

From my discussions with other Lyme sufferers, this is probably one mistake most people make. There was no way for me to know that I was going too fast. Maybe the naturopath should have insisted on a slower pace. But he didn’t have a clear idea of what was going on either.

The bottom line is that like any other person, I could not detoxify and get better any quicker than my body’s ability to detox and heal. I now wish I had been more patient.

Mistake two also had to do with a naturopath. I wasn’t getting better with the first naturopath, so I sought out another highly regarded ND in my city. He too wasn’t sure of what the problem was, but he was extremely confident in himself. So he proposed several things which he was sure would work. But deep down, I could hear my body warning me that I should be careful about his approach

So we ended up negotiating a fair bit. Now, I was going a lot slower, having learned from mistake one. I’d want to discuss his proposals at length, until I got a feeling inside that they had a good chance of working.

Naturopath No. 2 soon tired of this. It got to the point where he gave me an ultimatum. Do what I tell you or see somebody else.

So I’ll call my second mistake “Bowing to pressure from the doctor when you know in your guts he or she is wrong .” I would guess this is also on the top 10 list of errors for Lyme patients.

Again, I had a difficult decision. My health was continuing to slide, and my marriage was sliding with it. No other practitioner in town had a clue what to do.

I took his remedy, and it was a disaster. My health quickly worsened, which put further pressure on my marriage.

And this brings me to mistake three. I’ll call this one, “Not doing everything possible to maintain your primary human relationship.”

Looking back, I believe I tried very hard to do this. I did the best I could with the level of maturity I had at the time. But if I had to do it over again, I would have placed more emphasis on meeting my wife’s needs before I met my own. If I had done that, I might still be married.

My thinking at the time was that I had a very serious health problem that no one knew how to solve. Things were going downhill so fast that I feared it was life-threatening – and that may have been true. So when situations occasionally came up where my interests and my wife’s interests collided, I would sometimes feel the sick person’s view should prevail.

Lyme is known as a relationship wrecker, and I think it’s mainly because neither party usually understands the other party’s predicament. The caregiving one tends to think it can’t possibly be as bad as the Lyme patient claims, especially when there is no clear diagnosis. The sick person, on the other hand, tends not to understand just how difficult their situation makes things for their partner. Both lives are turned upside down.

I didn’t grasp at the time how important love and relationships are to the healing process. Back then, I followed our society’s more mechanistic view of human beings and how they get well. But I am not a machine. I am a human. And, like every human, I make mistakes.

Photo courtesy of joethegoatfarmer.com

Beating Lyme slowly and surely

You could liken living with chronic Lyme Disease to a high-wire act, or you might call it a knock-down, drag-out battle with a powerful and cunning opponent.

But I prefer a more peaceful comparison. To me, the daily struggle with Lyme is a lot like sailing.

Sailing? Here’s what I mean. To make progress in pushing Lyme into remission, you need to know how to take advantage of favorable winds, and how to avoid slipping backward when conditions are against you.

I’ll give you an example drawn from a recent daily journal.

I wake up feeling shaky after a rough night. A couple of small errors on my part along with a couple of unavoidable problems threw my hair-trigger immune system off course. As a result, I slept fitfully, waking numerous times, often with sweat pouring off me.

Not good. I think I got away with it this time, but too many sweaty nights with the immune system misfiring has a way of setting me back. Not only do I feel tired, but it eats away at my physical stamina.

So this day, I’m determined to pay close attention to my sailing, and concentrate on doing everything I need to do to successfully manage the day. I’ve been fighting Lyme for quite a while, so I’ve learned to follow signs my body gives me that let me know how things are going at a given point.

Some of what follows may sound over the top, but my body constantly gives me feedback on how it’s doing. Sometimes the clues seem odd, but after several years of seeing these signs repeat themselves, I’ve come to trust my interpretations of them.

I’ll start with clue No. 1, which isn’t the most pleasant way to begin. I’m speaking of my first poop of the day. Fortunately, it looks okay. Next come a bunch of other morning signs that present a mixed picture.

I start breakfast with a powdered probiotic. If it tastes weak, that suggests my body is asking for more of it due to some gut problem. But it’s strong. Yay. I then dig into a meal of quinoa crispbread, sunflower seed butter, and an apple. All is good except for the apple peel, which is hard to chew today. Yesterday, I had no trouble with a similar peel from the same bag.

That suggests there’s something in that peel my body doesn’t want today. I get resistance to my morning snack as well. I scoop out my usual sized handful of pumpkin seeds but only want half. I take these two signs to suggest my body is getting too much stimulation from foods and supplements, and this is part of what is edging my immune system out of balance.

The other morning signs don’t tell me much. The dumbbell I lift seems a tad heavier than usual, but that probably reflects a slight weakening of my body due to the previous night’s difficulties. I get a similar signal when I drink my daily solution of magnesium chloride crystals. It’s a bit weaker than usual, suggesting that my nervous system could use a bit more magnesium after a sweaty sleep.

At lunch, I get more resistance to food. About three-quarters of the way through the rice and eggs, my body tells me to stop. Again, too much stimulation, it seems. So I cut back my supplements a bit,  hoping this will improve my appetite.

I don’t reduce my midday dose of baking soda and water. Sodium bicarbonate, strangely enough, is a key indicator for me. When the baking soda tastes weak, it usually means my immune system is in danger of overreacting, and could use more of the sodium bicarb to increase alkalinity and slow things down. When it tastes moderate, this is a good sign. When it tastes strong, it suggests my immune system is engaged in some fight and doesn’t want to alkalize.

By now, I’m getting a message that I need to chill today, and avoid unnecessary stimulation. Unfortunately, I have to work on my taxes in the early afternoon. Always good for a shot of stress. When I take a break, I walk by a mirror and notice that my right ear is crimson. This redness suggests that I am indeed stressed and starting to overproduce histamine.

Time-out. Enough taxes for the day. Now is a good time to drive over to the beach and do some light exercise. It works. When I return, I feel relaxed, and my ear is back to normal.

It seems my body is now getting back in sync. I want all the pumpkin seeds this time at my afternoon snack, and, when I do another set of dumbbell exercises, they feel lighter than in the morning.

But at dinner, I’m still fussy, turning half the broccoli away, and leaving behind a bit of chicken as well. Once again I make a small reduction in supplements, and decide that a relaxed evening is in store.

So that’s what I do. I add a little extra meditation and prayer time, watch a comedy on TV, and head to bed. The signs are now positive. My evening dose of bicarb tastes as it should, my ear looks fine, and all other indicators seem in order. I’m finished sailing for the day, and I guide my body into harbor, er, bed. Looks like a good night ahead.

Photo: Eric Davidson

Boring Lyme to death

This blog post is going to be a real snoozer.

Rest is one of the most powerful weapons I’ve found in fighting Lyme Disease. So I’ll try to liven up the topic by talking about things like power napping, mega-meditating and super sleeping!!!! Now didn’t those exclamation points perk you up?

Maybe the most important trick to dealing with chronic Lyme is never to let yourself get tired and rundown.

I came across an article a while back that described it this way – “It’s a question of whether your voltage is adequate for your immune system to keep it (Lyme) under  control.”

I like that. It’s about your voltage. And how do you keep your voltage high? By making frequent visits to your battery charger, otherwise known as your bed.

I’ve still got a way to go before fully getting over Lyme, so I spend a fair bit of time charging myself on my queen size battery pack. Not usually for very long. Five minutes here, 10 minutes there, a few times throughout the day. A little rest after meals, a little rest after exercise, and a longish sleep at night.

If I were working in an office, this would be more difficult, but I know a friend who spends lunch hours and breaks taking catnaps in his car. I remember another friend who installed a small couch in his office and did likewise.

Even when driving, naps can be managed. If I drive for an hour, I’ll find a place to stop and shut my eyes for five minutes. I could go farther, but I stop before I get tired, so I won’t get tired. Keeping the voltage high.

Experts suggest that getting to bed early can be extremely helpful for anyone managing a case of Lyme. They say the hours of sleep you get before midnight are considerably more valuable to your health than any other sleep hours.

Taking their advice, I’ve gradually pushed my bedtime back from 10 p.m. to 9:45 p.m. to 9:30 p.m. I’ll make exceptions for social events of course, but I diligently try to stick to a regular lights-out time whenever possible.

This is not a particularly exciting way to do things, but it works. Frankly, I just want to get fully well, and I’m willing to sacrifice all the late night TV in the world to reach that goal.

So you may be thinking that anyone doing this sort of thing might as well become a monk. I don’t think that’s necessary, but I find that it’s a good idea to take a page from the monk’s playbook and meditate regularly.

Following their lead on living a peaceful, restful life would also be sure to give Lyme a hard time. Come to think of it, I wonder if monks get Lyme disease. Hmm.

I do a very simple 20-minute meditation exercise once daily. It’s called “Soften and flow”, and it works, reliably shifting me into the parasympathetic nervous system relaxation response if I’m not there already. You can find tons of other meditation approaches on the web.

So that’s all I have to say about sleep, naps and meditation. You could say I rest my case. Anyone still reading? Anyone still awake?

Seven free Lyme beaters

We’ve all heard the saying “Some of the best things in life are free.” But it’s also true that “Some of the best things that can save your life are free.”

A lot of you know that Lyme can be extremely expensive, with visits to medical practitioners, antibiotics, supplements and tons of other costs in most cases.

And you have to spend the money. Lyme can steal you everything you have, including your life.

But there is some good news. I’ve found there are many intangible factors involved in fighting Lyme, and I believe scoring high on these intangibles can make a big difference between getting well and not getting well.

Best yet, these things don’t cost a cent. So what exactly am I talking about? Keep reading and you’ll find out.

GROWING YOUR SPIRITUAL LIFE

I’m one of many people with Lyme who’ve been very sick and have lost big things like marriages and careers.  There is a temptation to be angry at God.

After all, if you believe in God, you most likely believe He could have prevented you from suffering.

I was mad at God. But I believe I’ve worked through that, finally accepting that His ways are beyond my understanding. What I’ve been through happened for a reason. I don’t know what the reason is, but I’m okay with that now.

It also dawned on me that it makes no sense to cut myself off from the one Being who can most help me. I believe I’ve received great healing through prayer, and I’ve read studies that show prayer carries health benefits with it. Other studies show that actively practicing a faith leads to a longer, healthier life.

MAXIMIZING LOVE

I know from personal experience that when you are dreadfully ill with Lyme, it’s hard to think much about anyone but yourself. This is understandable, but it’s a dangerous approach.

Part of the problem with Lyme is that most people don’t know how bad it can be. Often people with Lyme are sicker than people with cancer, but friends and family don’t realize that. In most cases, everyone rallies around a cancer patient. Often this isn’t the case with Lyme.

I wish I’d understood this a long while ago. I wish I had found a way not to be self-absorbed when I got really sick. I wish I had realized that the best way to receive the love I needed to get well was to give love and put others first, even though I knew I had a life-threatening illness. If I could have managed all these things, I might still be married.

It seems to me that in many and perhaps most instances, it’s the person with Lyme who has to reach out to family and friends and keep relationships in good condition. Doing this isn’t easy when you have zero or little energy, but if you can do it, it’s more than worth the effort.

EXERCISE AS MUCH AS YOU CAN

I’ve found that Lyme is a physical battle. The stronger you are physically, the better chance you have of beating the disease. One of the most respected Lyme physicians in the world, Dr. Joseph Burrascano, recommends patients start a serious physical fitness plan.

Of course, many people with Lyme aren’t able to do that. When I was bedridden, I tried to do a bit of light stretching whenever I could. Then when I got a bit better, I tried walking a bit. Then I could walk a bit more, and then eventually I could do more and more exercise.

I said these things cost nothing. Well, exercise can be costly if you go to the gym, but it can also be free. Walking can be the Lyme patient’s best friend. And I’ve found that I can get a lot of benefit from body weight exercises like push-ups. To find out more, Google body weight exercises, and you should be able to find dozens of them online.

LAUGHTER

There is nothing funny about Lyme, but keeping your sense of humor is very helpful in overcoming the disease. We all know the cliche about laughter being the best medicine, and while studies don’t actually list it as the No. 1 med, they do show a clear benefit.

I’m a laugh junkie. The only things I watch on TV are comedy shows and sports. There is a ton of funny stuff on YouTube, and you can download comedy programs from iTunes and other web sources. One particularly useful site is the Internet Archive, which is at http://www.archive.org.

MEDITATION AND DEEP BREATHING

Much of the Lyme battle is about staying calm and reducing stress. Recent research tells us one of the Lyme bacteria’s primary survival strategies is to overstimulate the immune system and throw it out of balance.

Meditation and deep breathing help me stay in balance. I do a 20-minute meditation daily, along with three sets of three deep breaths. I try to keep it simple to make it easy to do every day.

With the meditation, I focus on a few key words, and for the deep breathing, I just take deep breaths, preferably outside in the fresh air. There are plenty of techniques for both practices that you can find on the web, and it can be either very simple or more complex. Many experts swear by specific breathing techniques, but I find benefit from simply taking the deep breaths and not worrying about how I’m doing it.

MUSIC

Music, as everyone knows, can either pump you up or chill you out. Both approaches can be valuable to someone with Lyme.

I find listening to classical music a fantastic way to shift my body out of the sympathetic nervous system fight or flight mode to the parasympathetic relaxation mode. But there are times when various other forms of music bring me joy as well as a much-needed emotional lift.

GETTING OUTDOORS

Getting outdoors and taking care not to get further tick bites I should say. Air quality experts say outdoor air is far cleaner than indoor air, so I follow their advice and get outside as much as possible.

The beach is my favorite destination. I have allergies and the breeze off the water literally blows a lot of allergens away.  If I had an ocean nearby, I’d go there too because there’s no doubt that I feel best when I spend a lot of time by the water.

When I’m indoors, I’m a fresh air fiend as well. Not only does the oxygen you get by opening windows help in the fight against the bugs, it also cuts down the levels of allergens in your living space, as long as it’s not an allergy season for you.

 

Photo: Eric Davidson

LDI: Part 2. On hold

For me, LDI started out well, and I believe it’s going to end well.

But lately, it hasn’t been going very well,  so for the reasons I’m about to share I’m taking a break from Low Dose Immunotherapy.

I’m not sure why, but at about four months into treatment, the positive trend I had been enjoying started to shift. I hoped this would quickly pass, but it didn’t. I’d feel a bit better, then a bit worse, or maybe a lot worse.

Some days were okay, others dreadful.  “This reminds me of something,” I thought to myself. “The year when I first got sick with Lyme.”

Before going further, I should briefly explain LDI to those not familiar with it. It’s a treatment for Lyme disease and co-infections developed two years ago by an Alaskan doctor, Ty Vincent, that seeks to improve patients’ immune system tolerance and effectiveness. Many have seen fantastic results, and the use of LDI is rapidly spreading among Lyme physicians.

But while response has been mainly positive, some patients have had mixed results or even seen their situations get worse.

After investing a significant amount of time and money in LDI, it was hard to admit to myself that I was starting to go backward health-wise and that I had to do something about it.

Fortunately, I chose the right something – antibiotic herbs. I started with a microdose and gradually upped it from there. I’m happy to say that I’m now feeling a whole lot better.

I realize that Dr. Vincent says patients had best not take microbial killing protocols while doing LDI because that makes it more difficult finding the correct dose, but sometimes you’ve got to do what you’ve got to do.

I didn’t think it would happen this way, because, as I said, my LDI adventure had a good start.

My first dose was a fairly standard 15C (doses are diluted homeopathically and contain a minute amount of dead microbes). I had moderate flaring the first week or so, but the symptoms weren’t problematic. Following this came about a month of feeling pretty well, a bit better than I had been feeling in the months before starting LDI. Then came a couple of weeks where things slid a bit, although that was barely noticeable.

This is called a mixed reaction. I felt a bit worse when flaring, then a bit better afterward.

Because I had flared,  the LDI rules said I had to wait at least seven weeks for the next shot. My doctor weakened the dose to 17C, and again there was some flaring, this time milder, and again lasting about a week.  And again, I then experienced a month or so of feeling pretty well, followed by a couple of so-so weeks.

I hadn’t hit the magic target dose, but overall I was making progress. Until just before I was scheduled to take the next injection. I woke in the middle of the night feeling a bit nauseated, and my doctor decided later that morning to delay the shot until that cleared.

Good call. That bit of nausea turned into a two and a half week flare that I had an awful time shaking off. When I did, I received an 18C injection.

Again, a week or so of flaring followed. But then there was only one week of feeling a bit better. Following that, I felt like the flare had come back. That added up to nearly a month of nausea, body aches, and a general malaise to a degree I’d hoped I’d never experience again.

What went wrong? I’m almost positive it wasn’t some flu, because no one I was in contact with had anything like that. And I’ve had enough Lyme flares in my life to be almost certain that this was the culprit.

My main theory is that I was biting off more than I could chew. The LDI doses are homeopathic nosodes of Lyme and co-infections, and the purpose of a nosode is to stimulate the body to fight the microbes. I also found it interesting that an energy medicine practitioner I know said he was seeing strong evidence that LDI patients he worked with were significantly reducing their loads of the Lyme bacteria.

So I think I was killing more Lyme than my body could comfortably handle. It may have been a cumulative thing where I reached a tipping point where I could no longer manage the die-off nearly as well.

I believe winter was also a problem. I live in Canada, and even mild winters like this one mean that my immune system gets a lot less help from sunshine and fresh air and a lot more challenge from spending extra time indoors and from having to deal with the various colds and other bugs that circulate this season.

For the time being,  I’ll continue taking antibiotic herbs. But the reason I decided to try LDI  was because it has the potential to bring me from a point of being shy of fully well to being fully well. So I plan to resume LDI sometime in the spring when conditions seem more favorable.

For some people, LDI works right away, like magic. But it’s my sense that the majority of patients find it a winding road. That’s certainly what my path has been like, and I’m hoping that the bumpiest part of the journey is now behind me.

LDI: The great Lyme hope

I am a guinea pig.

By this, I mean I’m early on the boat when it comes to Low Dose Immunotherapy or LDI, which is considered by many to be the most promising new Lyme treatment to come along in years.

In a nutshell, these are the LDI facts. It was pioneered nearly two years ago by an environmental medicine practitioner named Dr. Ty Vincent, who hails from Alaska. He had been having difficulty getting his Lyme patients well, so he tried a new approach that spun off a treatment called Low Dose Allergen Therapy (or LDA).

With LDI, patients are given by injection or under the tongue an incredibly small dose of dead particles of many strains of the Lyme bacteria, Borrelia, as well as many strains of co-infections like Bartonella, Babesia, and Ehrlichia. Along with this, the patient is given an enzyme called beta-glucuronidase, a substance that helps build T regulatory cells, an important part of the immune response.

The idea is to develop more immune tolerance to the microbes.  Vincent’s theory is that most people with persistent Lyme are sick mainly because their immune systems are overreacting to the bugs and causing a negative cascade of chemical reactions in their bodies.

Somehow,  in a way that I don’t fully understand, the combination of the low dose dead microbes and the enzyme can cause the immune system to deal more efficiently with the microbes. The trick is getting the dose just right. When that happens, patients feel much, much better, and don’t experience any flaring.

It’s Vincent’s view that millions of people carry these bugs without getting sick, and that a lot of people ill with Lyme and co-infections could carry them too if their immune systems were properly regulated.

There’s more to it than that, but that covers the basics.

The question is: Does it work?

Early results looked fantastic, as, after several months, Vincent was saying 90 per cent of patients on LDI were improving, and many were totally better. That percentage has dropped substantially as the technique has spread and more doctors have incorporated it into their practices, but no one knows what the batting average is now.

I am not the guinea pig type, and rarely try a treatment until it has an established track record. But I tried LDI because for a long time I’ve felt that immune overreaction has been a major problem for me, and because many well-respected Lyme doctors speak highly of it and use it on their patients.

And, because it offers hope. I’ve gotten a lot better, but I’m stuck at a point shy of being fully well. LDI could change that.

So how am I doing? It’s nearly six months since I started, and I’d say I’ve been helped a bit in some ways and made worse a bit in others.

My first dose was a 15C potency. That’s a pretty normal starting point. The range is usually between about 5C and 23C depending on how sensitive your practitioner thinks you are. The potencies are homeopathically diluted, and according to Vincent, a 5C potency is equal to one part in 10 billion of the actual substance. Now that’s low dose.

I hoped my immune system would react to the treatment by shutting off inflammation and responding to the Lyme and co-infections in a more effective way. Then I’d feel great. This happens to some people. Not to me.

My reaction was mixed. You’re told to give it 10 days from the day of treatment before making any judgments, and after that period had finished, I had gone through some moderate flaring of symptoms, but overall I felt a bit better. But the mild improvement could have resulted from other factors.

One of Vincent’s rules is if you flare at all, you should go to a weaker dose after a seven or eight week period is up. The waiting period is because the dose, he says, is educating the T regulatory cells, and that process takes about 55 days.

So I tried 17C next. This time, there was mild flaring, and I felt much the same after 10 days. After another break of about two months, it was 18 C with very mild flaring, and at the end again I felt much the same.

The main question I have is this. When is a flare a good thing and when is it a bad thing? Vincent’s goal is to get patients not to overreact to the microbes and not have a flare, but he says getting a flare means your body is reacting, and that should mean that eventually you’ll find the right dose. He feels the worst thing is no reaction at all, which probably means the treatment won’t work for you.

But I wonder if perhaps a flare can in itself be positive. The diluted dead microbes are essentially homeopathic nosodes, and my neighborhood homeopath tells me the purpose of nosodes is to stimulate your body to fight the germs you are carrying.

In this case, a flare could mean that I may feel lousy, but my body is whittling down the microbial load I’m carrying. And that’s a good thing, as long as I’m strong enough to handle the flare. Having a severe flare when you are in a highly weakened condition is usually a very bad thing in my experience, as it can lead to serious setbacks.

My other question is that while getting the dose right means you’ll start reacting to the microbes more effectively, does missing the right dose lead to your body to deal with the microbes less effectively?  I sometimes get the sense that since starting LDI my body has become more likely to overreact to the germs.

There’s also the opportunity cost of LDI. Vincent recommends patients stay off killing protocols until they’ve found the correct, or target dose, which will be given regularly once it’s been established as a way of keeping patients well. But I’m six months in and really at much the same point as where I started. Would I have been better off now if I’d gone with other treatment options?

As guinea pigs go, I’m a stubborn one, so I’ll give it at least one more try. There are many cases where people go many months searching for the target dose, and once they find it, it’s like sticking a key in the ignition switch. Vrroom, vroom, and life is all of a sudden a whole lot better. Knowing that makes it very difficult to give up on the great Lyme hope.

Beating Lyme with the anti-inflammatory lifestyle

People with Lyme disease hear the words all the time. Eat anti-inflammatory foods, take anti-inflammatory supplements, and if you need to, take anti-inflammatory medications.

This makes sense, as the smart doctors tell us that inflammation is a key problem in Lyme.

But what about taking this one step further and living an anti-inflammatory lifestyle?

Now, what is an anti-inflammatory lifestyle? The idea occurred to me a while back as I was rushing around just trying to get things done that needed doing.  Basically, it means chilling out.

Having Lyme cuts into the number of productive hours I have in the course of a day. Let’s face it. Like many people with Lyme, I’m a type A personality, and I like packing as much activity into a day as I can.

But let’s face something else. Being type A might be one of the reasons I got very sick with Lyme. When it first hit, I’d probably have been better off if I’d been a couch potato. Just lying around and resting was what my body badly needed at that point, and I wasn’t wired to do that any more than necessary. The doctors said nothing was wrong with me, so I couldn’t justify quitting work and laying low as I should have.

My fight with Lyme has chilled me out quite a bit, and now I watch out for overdoing things. In fact, I don’t have a lot of bad days any more, but they usually come after I’ve done a bit too much activity. The problem is most likely to happen if try to pack too many things into a short space of time.

So I’m making a major change. It goes something like this. Remember the Seinfeld episode where George decides the way to success is to do everything contrary to the way he usually does it. That’s the basic idea of a Type A switching to the anti-inflammatory lifestyle.

Oddly enough, my nose is an indicator of how well I’m doing. When I start to rush around too much, my nose starts to get a bit inflamed and red. At least in my case, there is clearly a direct correlation between rushing and doing too much and inflammation. The more I rush, the bigger and redder my nose gets.

This gives me both a guide and incentive, as my natural nose is a nice size and color and my inflamed nose isn’t.

Here are some of the changes I’ve made.

  • I used to like combining trips, thinking how much time I could save. Now, when possible, it’s point A to point B and back again, followed by a five-minute rest.
  • I used to drive a bit fast, but now I follow the speed limit.
  • I used to think there was no way I could meditate. Bo-ring! But now I meditate 20 minutes a day, and throw in 10 deep breaths three times a day on top of that.
  • I used to eat fast. Now I try very hard to eat slowly whenever possible.
  • I used to hate napping. Now I schedule a few 10-minute mini-naps daily, and whenever I feel my system is going too fast, I’ll toss in another one.
  • I used to rush around trying to do things as quickly as possible. Now I’m trying to take my time and enjoy doing basic things that I couldn’t do when I was very sick with Lyme.

The idea is to keep my body in the parasympathetic, or relaxed mode, so the immune system can better do its job. Too often our busy lives throw us into sympathetic, or fight and flight mode, which impairs the immune system and gives Lyme an edge. Sometimes rushing can’t be avoided, but as soon as the rush is over, I’ll lie down and rest for a bit.

So far, I’ve found the anti-inflammatory lifestyle works well. It keeps the inflammation down, gives Lyme a hard time, and it even keeps my nose from looking like I should be driving Santa’s sleigh on Christmas Eve.

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

 

The double-edged sword of exercise

Exercise. Sometimes it’s been my best friend and sometimes it’s been my worst enemy.

I’ve always been an athletic person, so it’s difficult to admit that exercise was probably one cause of my getting sick with Lyme.

Here’s what I mean. It appears I was carrying Lyme and various coinfections for years until the perfect storm hit and several stressors gave the microbes the upper hand.

Things like picking up a bad flu bug, working in a sick building, living in a moldy house, and doing too much exercise.

There were few activities I enjoyed more than cross-country skiing. I’d go for miles and miles, and I’d always feel exhilarated when finished. Until suddenly I started feeling exhausted.

I had no clue the last thing I needed was to further wear out my adrenal glands, which Lyme was stealthily battering. The doctor said I was fine, but I soon knew I had to stop knocking myself out on the ski trails.

As my health began spiraling downward, I gave up exercise altogether. The Lyme took off, and I quickly found myself bedridden.

My first mistake was too much exercise. My second was too little. While the idea of expending energy for anything besides essentials seemed preposterous, doing no exercise contributed to my getting weaker and weaker. At one point, I had to switch from 16-ounce water bottles to eight-ounce bottles because the larger container was too heavy.

Eventually, I decided I’d do whatever exercise I could manage. It was a good move, if you’ll pardon the pun.

I started with the invisible nautilus. I figured I had enough strength to do exercises I once did at the gym – things like arm curls, bench presses and leg raises – if I used zero weight.

Slowly I advanced to wall pushups. Then I could start walking again. One day to the first telephone pole on my street, a few days later to the second telephone pole and so on. I was walking at the speed of a 95-year-old, but I was walking.

In retrospect, I credit exercise as a factor in a return to much-improved health. The arm curls advanced to two-pound weights, then three pounds, four pounds and upwards and onward. The walks got a bit longer and longer. Moderate exercise became possible once again.

I haven’t strapped on the cross-country skis yet, but I look forward to the day when that happens. The key for me with exercise is always, always, always, do only what I feel confident I can manage and no more. So now that I have a grasp of what my limits are, exercise has once again become a real good buddy of mine – all the time.

Helping yourself too much

Hey Jetsons fans. Remember the episode where Elroy gets a movie gig.

Well, if you don’t, here’s how it goes. Elroy gets chosen for a movie part, and Papa George is hanging around the set all day trying to help out his son, the director and anybody else who happens to be around.

But of course, George only gets in the way, messing up scene after scene. The director gets fed up, and George ends up being chased around by a variety of ferocious beasts, barely escaping with his life.

I hate to admit it, but sometimes I can be a lot like George.

That episode came to mind a while back when I was trying to ward off a cold. Like most people with Lyme, I’ve got enough microbes to handle, and I try fiercely to avoid colds and flu. But I overdo it sometimes, and my herculean efforts can get in my body’s way.

As I’ve mentioned in recent posts (maybe I’m overdoing this too), one of the Lyme bacteria’s main survival strategies is to overly boost a person’s immune system. This throws the immune out of balance and leads the person with Lyme to overreact to pollens, dust, molds, cat and dog hair, microbes, etc. and end up exhausted by the effort. And this gives the Lyme a chance to get the upper hand and make you miserable.

So I always keep in mind the need to not add to that overstimulation.

But all of a sudden my roommate is endlessly barking out coughs and making kazoo sounds with his nose, and I really don’t want that cold.

What do I do?

I dig into my supplement bag and pull out the vitamin C, the zinc, the herbal cold formula and a few other things, and I zing that virus with something every two hours. It works, as I get away with a few sniffles.

I’ve won the battle, but, unfortunately, it looks like I lost the war. One mistake was taking stuff in the middle of the night. I woke up with a stuffy nose, got up and wolfed down a few supplements. The resulting immune boost kept me awake for several hours.

I did this a couple of nights in a row, and I rose in the morning with no stuffy nose, no sore throat or other cold symptoms. But on day two I felt really tired and draggy with some of that old Lyme malaise. The kind you try to explain to the doctor and she comes back with a puzzled look. Then you say, ‘Doc, I just feel like crap.’

What it seems I had done was lose too much sleep and at the same time push my immune system out of balance by taking too many anti-cold supplements, giving the Lyme a chance to bash me over the head again. And it took several days to get back in balance.

This is just one example of how careful I have to be not to try to help myself too much. I try not to beat myself up over it because Lyme presents so many can’t win propositions. But I always have to remember not to take too many supplements and not overstimulate my body. I also have to avoid the danger of taking too much and thus drawing out more toxins than my body can handle at a given time.

So what will I do the next time my roommate’s cough sounds like something coming out of a Labrador retriever. Hmm, let’s see. How about rest and fluids?