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.

Cutting the cost of Lyme

I’ve always been pretty good at finding ways to keep my wallet stuck inside my pocket, but since getting Lyme disease I’ve been forced to further refine the art of not spending money.

Make no mistake, getting well from Lyme can be very costly. There are often physician visits, antibiotics, lab tests, supplements, sometimes top-quality herbs, etcetera, etcetera. So I’ve found that creativity is needed to save some of those ever-shrinking funds.

You can always cut out frills, but you have to eat. When I first got sick, I had to change my diet and it was strange and difficult. But once I made the paradigm shift, I found the new normal to be far superior, and cheaper.

Successfully making these changes required seeing through a couple of food myths. The first: Vegetables and fruit are expensive. The second: Going gluten free is really expensive.

Eating lots of vegetables, health experts agree, promotes better health. And while some veggies are costly, many of the ones most helpful for people with Lyme are cheap, such as garlic, onions, leeks, cabbage, parsley, and carrots.

When I go to my fruit and vegetable store (a much better option than the supermarket) I aim at 30 cents per serving of veggies, and I easily meet that goal. And if you want to spice things up, you’ll find that spices are often the cheapest foods you can find.

Staying within that price range with fruit is tricky, often requiring buying sale items. I also buy the smallest pieces of fruit available, as this reduces both cost and sugar intake.

It’s not a myth that organic produce is expensive. If you can afford it, great, but even if you think you can’t, sometimes you can. My store sometimes has specials where the organic version of a veggie is cheaper than the conventional one.

I find it difficult convincing people that gluten free doesn’t have to mean breaking the bank. If you can’t imagine a world without packaged food, then gluten-free prices are ridiculous. But if you shift to eating fresh veggies, fruit, eggs, nuts, seeds, non-gluten grains like brown rice, quinoa and buckwheat, and moderate amounts of meat and fish, you’ll be off gluten with substantially reduced cost.

I’ve also learned that I can save a lot by eating prebiotic and probiotic foods. There are dozens of them, usually common everyday items, and you can find their names with a quick web search.

This reduces my need for expensive probiotic supplements. And some experts, like Dr. David Perlmutter, author of the bestsellers Brain Maker and Grain Brain, and Jeff Leach, author of Rewild, say that while bottled probiotics are good, eating a wide variety of probiotic and prebiotic foods is also important for gut health.

I’ve found several other areas besides food where I can fight Lyme inexpensively or without cost.

Lyme patients must handle exercise cautiously. If your body is exhausted, it’s foolhardy to do anything but light stretching. But for many, exercise can produce significant health gains. Dr. Joseph Burrascano, a leading Lyme physician, is among those who advocate substantial regular exercise for Lyme patients.

Fortunately, I can exercise, but I can’t afford gym memberships. So instead of paying hundreds of dollars, I bought a $10 book off Amazon outlining dozens of body weight exercises. These exercises use your body’s natural resistance as weights. Push-ups are one example.

Making this approach more valuable is the option to do it outside – in your backyard, at a park, or best yet at the beach or ocean. I’m allergic to mold and several other things, and the breeze coming off the water clears away a lot of the allergens.

That brings me to two of my favorite free Lyme helpers – fresh air and prayer.

No one would dispute fresh air’s benefits. Studies suggest outdoor air is generally much cleaner than indoor air, so I get outside as much as I can – of course guarding carefully against further tick bites. I also open my windows as much as possible, as long as there are no allergens around and as long as it doesn’t put me in the way of a draft.

Prayer, on the other hand, has its believers and its doubters. I’m a believer. Some studies say prayer promotes healing; others say it doesn’t. But in my experience, I feel I’ve seen important benefits.

The act of prayer itself usually promotes a state of calm, similar to what would happen in meditation, and being in a peaceful state helps everyone. And meditation, of course, can be free too. One method is a simple breath meditation, where you still yourself and follow your breathing.

Healing prayer with laying on of hands has many skeptics, but I feel I have received a considerable health boost as a result of it, and it hasn’t cost me a cent. If interested, you could find out about this option by asking around at local churches or by checking the web. Healing prayer by phone is also offered through many sources, one of which is well-known Lyme author Connie Strasheim, who has regular prayer calls. Information can be found at her website – www.conniestrasheim.com.

Perhaps the widest variety of useful, free resources can be found at the local library. I can get not only free printed books, ebooks, and audiobooks, but also free movies and music and free computer and internet access.

An ongoing battle with Lyme means that you never know when you can use that extra cash you kept in your bank account. Maybe you can try a new treatment that shows promise, or travel to see a top-notch physician. And while holding on to money may not be as much fun as spending it, I think I’m one of many people who derive no small amount of joy from finding new ways to save the stuff.

 

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

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.