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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 where 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

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

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.