5 things that got me out of Lyme hell

I can’t recall the name of the comic strip, but I remember this hairy little troll living in a dungeon. You’d always see him on his knees digging in the dirt, trying to make a tunnel out of prison.

This is what it’s like being stuck in the middle of a really bad case of Lyme. Every day you try to gain two inches of ground and try not to lose more than one.

I know. I was there. For a long time.

Bedridden week after week, housebound month after month. Things would occasionally get a bit better, and I could go outside and walk at the pace of the average 95-year-old for 20 yards or so, but rarely more than that. This went on for seven years.

How bad was it? First of all, my doctor thought I might be dying.

Beyond that, I spent years not being well enough to see friends, not well enough to go anywhere, not able to talk on the phone or read for more than 10 or 15 minutes a day, not able to watch TV for any longer than that, not able to do much of anything but lie in bed thinking mostly about ways to get out of this predicament.

Worst of all were the times when I wondered if I was dying.

After falling asleep exhausted, I’d sometimes wake up a few hours later and still be so exhausted I’d have to lie there motionless for a half hour or more to get the strength to make the seven-step walk to the bathroom.

There was one hot night when I felt I would pass out, and I staggered across the hallway into my father’s room to where the window air conditioner was.

So how did I get out a hole as deep as that?

I can think of five main things that made a huge difference. They are as follows:

PRAYER:

I come from a Christian family. My father is a preacher and has many preacher friends. I never stopped praying, and neither did my mom or my dad or their friends or people at my church. My name was on the church prayer list every week for years.

Several times prayer warriors drove more than an hour to pray with me, and one preacher friend not only prayed but fasted to try to aid my cause. I believe God answered those prayers because I started getting well very suddenly.

I started by making my walks a bit longer, and soon I found my legs had normal strength for the first time in nearly a decade. The whole process took several months, but I went from maybe 10 per cent of normal to about 70 per cent of normal.

Now I could see friends, I could talk on the phone all I wanted to, I could exercise, I got my driver’s licence back, I could do a whole bunch of things I hadn’t been able to do before. Bedridden no more, housebound no more. And I hadn’t made any significant changes to what I was doing.

This sort of thing just isn’t supposed to happen after seven years of being so low. Did God heal me? I believe he did.

BELIEVING I’D GET WELL:

I must admit there were days when I fought off feelings of hopelessness, but I truly always believed that I would get well. I told people that many times and could see from their expressions they didn’t believe me. Once I overheard my mother talking on the phone with a friend, referring to me as “an invalid”. My mother acted heroically for me in many ways, but I sternly told her never to call me that again.

I remember back in the dark days I bought a pair of running shoes. At that point, I couldn’t have run if the house had been on fire, but I did it because I believed I would run again. I don’t know the science behind belief very well, but I do know that many studies have shown that the mind is extremely powerful and so is simple belief.

HAVING SOMEONE TO LIVE FOR:

This may be a cliche, but having someone or something to live for can save your life. In many concentration camp stories, survivors point to that as what got them through.

For me that someone was my son, who was one when I got sick. My illness coupled with a stressful job made life extremely difficult for my ex-wife, and she decided to leave.

Because I couldn’t take care of myself at the time, I was forced to move in with my parents who lived three hours away from my son lived.  I tried every possible arrangement to stay in the same city as my son, whom I have always loved like crazy, but nothing worked.

I did not see my son for seven and a half years, but I thought about him every day. I’d call him on the phone regularly, usually on Saturdays. Friday was a total rest day. I would do nothing that wasn’t necessary, so I’d have enough energy saved up to talk for the 10 or 15 minutes I was able to manage.

There was no way I could give up. I had to see him again. There was nothing I wanted more than to be a proper father to him, and I was determined that was going to happen.

KEEPING IN TOUCH WITH A GOOD DOCTOR:

I was very lucky to find a skilled, compassionate doctor who had gone through a similar experience herself. When I still lived with my wife and son, she made at least a dozen house calls, and when I moved to live with my parents, we had short phone consults every two months.

There wasn’t a lot she could do from a distance, but she monitored my situation and made many helpful suggestions. Maintaining contact with her was vital for me because I knew that I wasn’t fighting this alone, and that an experienced doctor could guide my steps.

MOVING IN THE DIRECTION I WANTED TO GO:

I mentioned buying a pair of sneakers earlier. That was one example of keeping my brain thinking that I would get well and preparing my body for the day I would be well.

It also meant doing everything I knew of to live as healthy a life as I could, whether that meant only eating healthy foods, getting as much fresh air into my room as possible, being as active as I could be under the circumstances, or spending a lot of time thinking about what I needed to do step by step to get through each day as well as I could.

That meant if I felt well enough to walk for even 10 feet, then I’d walk for 10 feet. If it meant I could do a bit of light stretching without feeling negative consequences, I’d do a bit of light stretching. If it meant having someone come to pray with me even if I felt wretched, then I’d do that. Digging that tunnel out of jail bit by bit by bit. And, finally, freedom came.

 

Photo: Eric Davidson

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

Life Lessons from Lyme

I’ve heard people say that Lyme has taught them so much they’re glad they got the disease. I can’t imagine ever hearing those words come out of my mouth, but I have learned some important things.

Some of these lessons are things that you commonly hear from people who’ve gone through potentially life-threatening illness. They may sound cliched, but I believe they bear repeating.

I’m not sure how close I was to checking out, but at one point I asked my doctor if I was dying. I hoped she’d tell me it wasn’t nearly that bad. But all she said was “I’m not sure.” Although I’m still on a journey to recovering full health, I’m a lot better than I was. And I think I’m well enough now to put into practice the following lessons that I hope I have truly learned from my fight with Lyme.

It’s about love. Treat other people with love. Treat yourself with love. Do things you love doing.

Be grateful. If you believe in God, constantly thank Him for what you’ve got. If you don’t believe in God, just be thankful.

Let a lot more things go. There are times when you have to stand on principle and argue, but, really, those times are rare. More often, it works out best if you just drop it.

Do stuff that matters. Spending time with family matters. Meaningful work matters. Anything that makes a positive contribution to life matters.

Don’t waste time. When I’m planning my days, I ask myself, ‘What can I do that’s important today?’ I’m not saying never watch TV or anything like that, because sometimes that’s a good use of time. But I try to make a real effort to use this most valuable resource well.

Be positive. Be enthusiastic. When Lyme is really bad, this is a challenge. But if you can pull it off, no one is better off for it than you.

Put others first. I don’t know about you, but I get a lot of satisfaction from helping people. Especially family. One of the many reasons I love having a son is that there is nothing that makes me happier than helping him out in some way. There were many years when I could do precious little for him because of Lyme, and that was very, very difficult.

Forgive, forgive, and forgive some more. Nearly everyone with Lyme has endured more than their share of mistreatment. Doctors telling you’re making it up, friends and family members telling you to get off your butt when you’re seriously ill, and worse. It can be difficult to forgive, but it is essential. Otherwise, you’re just loading yourself down with bitterness and anger. Personally, I don’t have the excess energy to carry those bags.

Take great care of others. If you think of something nice to say about someone, don’t hold it in. Say it. Let people in your life know how much you appreciate them.

Take great care of yourself. I’ve made a pledge to myself to do things, say things, eat things, etc., that are going to lead to full health. I fall short sometimes, but I try.

Like nearly everyone else, I’m tougher than I think. Lyme can dole out an unbelievable amount of punishment, and I hope those bugs are impressed that we humans are built to absorb a lot of distress. When you think you just can’t take it anymore, the truth is that somehow you nearly always can.

Take your time. More often than not, rushing is counterproductive. After Lyme has stolen so much, it’s tempting to try to catch up too fast. I have to work hard to guard against this. Being a Type A personality likely contributed to my Lyme woes. Remembering to slow it down is a daily challenge.

ENJOY LIFE! When you’re having an off day, think of how much better it is now than when your Lyme was at its worst. Enjoying life then may have been next to impossible. So if you’re now in a position where it’s fairly easy to enjoy life, go ahead and do it. Every day.

Photo: Eric Davidson

LDI: What I’ve learned

Okay.Here are the stats. Eight months of Low dose immunotherapy. Five injections for Lyme and co-infections. Two instances of moderate flaring of symptoms, one mild to moderate flare, one mild flare, and one very mild flare. Seem to be closing in on the target dose.

So what have I found out on this long and sometimes baffling journey? One thing for sure is that it can be very difficult to find the target dose. Beyond that, here are some other observations.

Take it easy and get your rest after taking the LDI dose. It’s a tiny looking amount you’re taking, but it’s packed with dozens of Lyme and co-infection antigens. If you have a lot of co-infections, your body could be in for some heavy flaring if it’s not your target dose. The antigens are essentially homeopathic nosodes (made from micro dilutions of dead microbes), which can stimulate your immune system to fight. Dr. Ty Vincent, the founder of LDI, says that if you’ve found the core dose, you shouldn’t have any flaring. But finding the core dose takes time, and flaring is a lot more common than not flaring.

Take it especially easy once you’ve determined that you are flaring. I learned this with a recent dose. I could see a mild flare had started, but I had a lot I wanted to do that day. By 7 p.m. I felt dreadful. I scheduled extra rest in the following days, and from then on the flare caused no serious distress. Lesson learned: My body needed extra energy to handle the flare.

LDI doesn’t work as well for me in winter. I live in Canada where even mild winters like this past one are plenty cold. I found it much harder to tolerate a flare in January than I did in September. The reduction in fresh air and sunshine negatively affects immunity, as does the increased number of viruses and other other bugs kicking around in mid-winter.

Some flares may have a silver lining. In two instances, I felt better after the flare was over than I had before the flare started. This is not the way it’s supposed to work, according to what Dr. Vincent has said in interviews. This isn’t criticizing Dr. Vincent, who has done tremendous work with LDI, but in just about every field sometimes the general rules don’t apply to everyone. Several other people on the LDI for Lyme Facebook group noted they’d had the same experience of feeling better after the flare than before the flare.

If you’re very sensitive or have had Lyme for a long time or have a lot of co-infections, it’s probably best to do one set of antigens at a time. Along with LDI for Lyme and co-infections, you can add in yeast, mold and other antigens. I fit into all three categories mentioned in the heading of this paragraph, and I’ve had plenty to handle with the LDI for Lyme and co-infections antigens. I can’t imagine moving on to other things until I’ve found my core dose.

It’s a good idea to work on reducing microbial load before doing LDI. This is especially true if you have a lot of co-infections. As I mentioned above, an LDI dose can give your body a lot of work to do if you’ve missed the core dose. I’m very glad that I’d taken a lot of antimicrobial herbs and  done other microbial load reducing work in the time leading up to my first dose. If I hadn’t, the process so far would likely have been a lot more problematic.

Napping can be an effective weapon once you’re determined you’re flaring. I’ve found I can save myself a lot of misery if I take a nap as soon as I’m certain a flare has started. I don’t like napping, so I didn’t do this in my early days of LDI. But I have since found that my mother was right years ago when she told me that if you’re feeling sick, lie down and rest. Works for colds, flu and LDI flares. It’s probably good to increase fluid intake too.

I probably wouldn’t have wanted to try LDI when I was really sick. Finding your target dose can be an intense process that includes a lot of flaring. I’m at a point in my recovery where I can handle that, but in earlier days when I felt dreadful all the time, having a lot of flares may have placed too much stress on my body and provoked a serious setback.

Different batches may affect potency. This is controversial. Some people on the LDI for Lyme Facebook group say the doses don’t lose any strength if they were made many months before injection. Others disagree. All I can say is I initially reacted more strongly to an 18C dose from a fresh batch than I did to a 17C dose from an old batch (18C is weaker than 17 C, so I should have had a stronger reaction to the 17C).

Don’t assume the flare period is over when you start feeling better. I’ve had two instances where it looked like the flaring process was finished after seven days. But then on days nine and ten after taking the dose, I had my most intense flares.

It can be a good idea to take a break in treatment.  This happened to me this past winter. I had a near three-week flare, and it was time for my next LDI shot, and I still wasn’t feeling great. The picture wasn’t clear, so I decided to wait a few weeks until I felt better before resuming LDI. Things soon settled down, and now I’ve taken my next shot and things appear to be back on track.

It’s important to be very patient. An LDI flare can make you feel so sick you want to quit. And sometimes it can be a good idea to quit if the treatment is clearly not working and does not look like it ever will. But for most people, it’s a  matter of realizing this is a new thing that can be both very difficult to figure out while at the same time offering a real hope of substantial improvement and even complete remission from Lyme. Knowing that makes patience a lot easier to muster than would otherwise be the case.

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?

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