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The Lyme Equation: God = Hope

For many years, Lyme disease made me seem like a hopeless case to my family, my friends, and just about everyone who knew me.

I believe God changed that.

Looking back, I feel my main job in those days was to hold on to hope while I tried everything my doctor and I could think of to get better from Lyme. That was seven long years of being basically housebound, and when I was occasionally well enough to go outside for a walk, I moved at the speed of the average 90-year-old.

This span covered my late 30s to early 40s, as I was forced to live with my parents because my wife left me. It was day after day staring at the bedroom ceiling.

Most days I had to spend about 23 hours in bed. I once heard my mother telling a friend she was taking care of her invalid son. Invalid. What an awful word. I told her to never say that again. And I told her and others that someday I would get well. I doubt anyone believed me.

One morning my dad came in to my room and asked if I wanted an itinerant pastor to come pray for me. He mentioned the guy worked partly as a preacher and partly as a lumberjack.

At that time, I had been saving up my energy so I could get a badly needed haircut, so my first response was, “Dad, what I really need is a barber, not a lumberjack.”

But then I thought again. Why should I turn down an offer of healing prayer when I so desperately wanted to be well. Bring on the lumberjack.

This pastor didn’t understand what I was going through, but he was a dedicated man who spent an hour praying with me, and then promised to go home and start fasting and praying that I be healed.

I’m not sure if it was his efforts that made the difference, as many people were praying for me, but soon after he visited, things suddenly started to happen.

Neither my doctor or I had made any significant changes in how my Lyme was being treated, but shortly after that prayer session, I felt well enough to go outside and stand in the backyard for 10 minutes. My legs had been so wobbly that I hadn’t stood for more than a couple of minutes at a time in years.

Then I started to stretch out my walks, and found I could go further and further without paying any price for it. I can still remember the day I was walking past a mechanic’s garage on our street and noticed that my legs felt solid. Eureka!

Things quickly fell into place. In the matter of a month or so I put on about 15 pounds after being underweight for many years, and started doing normal things like watching TV. This had been impossible for me to do for more than a few minutes, but now it became easy. I could watch an entire movie, no problem. And I could stand for as long as I wanted.

I didn’t get fully well, but I went from being that invalid to being functional. For those who don’t have Lyme, it would be hard to understand the joy you feel after being a prisoner in your own body for seven years, and then finally being released.

I’m still working at getting back to 100 per cent, and I believe I’ll get there, with God’s help.

So I can’t prove that God healed me, but I can’t think of any other explanation. Mainstream medicine would tell you that people who are practically bedridden for seven years don’t often all of a sudden get a whole lot better.

For me, the moral of this story is to hold on to hope. You just never know when prayer is going to produce great results; you never know when God is going to step in. Scripture tells us that all things are possible for God. Even though Lyme may make things look totally hopeless at times, the truth is that holding on to hope makes a lot of sense.

Is Chronic Lyme Curable?

The question on my Facebook group this past Sunday morning was “When you have chronic Lyme Disease, is it possible to cure at 100 per cent?”

Quickly, someone wrote “No.” I disagreed, so I posted “I believe the answer is yes.” The first poster shot back with “Well, you’re wrong,” and someone added one of those ha-ha-ha options on the Like button, just to rub that in.

It seemed like an innocent question at first, but now I could see there was a long, emotional argument taking shape.

The last time I checked, 93 people had weighed in. There were a few main camps – no, yes, and remission is possible but not cure.

My position didn’t fit into any of those categories. I further explained that because there is no 100 per cent accurate test for Lyme, there is no way of knowing if someone is cured or not. This is why I said, “I believe the answer is yes,” rather than saying yes.

How you look at this debate depends on how you define cure in the sense of the question asked. I took cure in this instance to mean that a person is fully well and no longer has Lyme in his or her body.

I’ve done a lot of Lyme research and read articles by and listened to podcasts featuring many Lyme-literate medical doctors (LLMDs), and the majority disagree with me. Most LLMDs I’ve heard answer by saying they think remission for people with chronic Lyme is very possible, but that being fully cured isn’t possible. Still, I’ve heard some LLMDs say they think being fully cured is possible.

I agree with them because that while getting fully well from chronic Lyme can be incredibly difficult, many people have done just that. Are those people in remission or are they cured with the Lyme being fully eradicated from their body? Again, we have no way of knowing because the testing isn’t perfect.

Some of the patients who say they believe Lyme is curable talk about various modalities they feel got them well. Some point to Rife machines, some to Bee Venom therapy, some to Chinese medicine, some to other treatments. But no one can say for sure they were or weren’t cured.

This is where belief comes in. While I would be very happy if I achieved full remission and fell short of cure, my goal is to be cured from chronic Lyme, to become fully well, and to have Lyme fully eradicated from my body. Because there is no way to prove if this is possible or impossible, I choose to believe it is possible.

One of the reasons I choose to believe this rests on recent scientific research pointing to the power of belief. Probably the best known work in this area, Dr. Bruce Lipton’s book, The Biology of Belief, describes how believing in something can lead to the creation of beneficial brain chemicals that foster well-being and healing.

Obviously there is no cure right now for chronic Lyme in the sense of a treatment that will guarantee that Lyme can be eradicated from a person’s body. But what I think is possible is that if a person incorporates treatments that work for them, lives a lifestyle that strongly promotes healing, physically, mentally and spiritually, and works through any spiritual or emotional blockages that may be hampering their immune system, then they would be the ones most likely to have a shot at being 100 per cent free of chronic Lyme.

Some would say I’m mistaken in giving myself false hope. Hope is a precious thing for those of us with chronic Lyme and not something to be taken lightly. I spent seven years practically housebound, only occasionally well enough to get out for a very short and very slow walk. Most people had written me off. My own mother once referred to me as an invalid. But I chose to retain hope I could get well.

I’m not fully well but I’m way better now and functioning at a fairly high level. If I’d given up hope I might not be alive today.

Still, I understand why many people with chronic Lyme don’t want to get their hopes up. After trying and failing treatment after treatment, going year after year feeling wretched, and having their hopes dashed time after time, they understandably want to guard against false hope. I get it. I’ve been there.

Maybe I’m wrong in believing that it’s possible to be 100 per cent cured from chronic Lyme. Maybe my hope is false hope. But I’d much rather have false hope than no hope at all.

Seven easy ways to not delay your healing

I was going to compile a list of “don’ts” here, but nobody likes to be told don’t do this and don’t do that. So why don’t I make it a list of “avoids”?

We people with Lyme are usually so focused on making sure we do this and take that and see so and so that we don’t pay enough attention to what we should steer ourselves away from.

It’s all about not accidentally shooting yourself in the foot and setting yourself back. Many times what you don’t do is as important to getting well as what you actually do.

#1 – AVOID watching a lot of TV news. People underestimate the importance of keeping their headspace positive. I’ve worked in television, so I know that TV exists primarily to sell advertising.

To help further this, many things are sensationalized and made to appear more extreme than they actually are. You may have noticed this during the recent U.S. election campaign. It appears the trend will only worsen.

A little TV news can help keep you informed, which is a good thing. A lot can get you depressed and carrying a negatively skewed view of the world in your head. Not so good.

#2 – AVOID eating (much) crappy food. In recent years, health researchers and doctors have been increasingly stressing the importance of a good diet to maintaining health. I’ve seen in my own life what an incredibly positive difference eating the right foods makes. But let’s not go overboard. Healthy food is often tasty, but unhealthy food is often really tasty. So go ahead and cheat, a bit, especially now that we’re in the holiday season.

#3 – AVOID arguing unless you have to. This might be a difficult one for the politically inclined this holiday season in the wake of the recent U.S. elections. But love has an awful lot to do with getting healthy and positive relationships generate love. Arguing has a way of tearing apart relationships, and really, what purpose does it serve 99 percent of the time? Sometimes you have to take a stand, but those times are rare.

#4 – AVOID believing that you’ll never get well. I remember early in my Lyme journey when I just couldn’t see how I could get better. I felt doomed. Big mistake. In his landmark book, “The Biology of Belief,” written in 2005, Dr. Bruce Lipton wrote convincingly of how a person’s beliefs play a huge role in what actually happens to them. This concept is becoming so mainstream that National Geographic just wrote a cover story on it.

The truth is that many, many Lyme patients have emerged from seemingly desperate circumstances to get fully well. Sometimes it’s a new treatment that works for you when previous ones didn’t. Sometimes it’s finding a different doctor who figures out your problem when others couldn’t. In short, there’s good reason to AVOID giving up.

#5 – AVOID pushing yourself too hard. This is especially important to remember during the holidays. One of the most valuable skills a person with Lyme can master is learning how to say no. When your energy level will allow you to do only so much, politely explain to people that this is the case, and it’s very important for you not to overdo it.

Not pushing yourself too hard also comes into play when it comes to treatment. Lyme medications can often cause serious die-off (Herxheimer) reactions, but many doctors in the field are now saying that it’s best not to promote these Herxes as a good thing to be aimed for as has often been done in the past. I believe the newer message is better. It says that Herxes are sometimes unavoidable but that you should try to avoid them.

#6 – AVOID getting down on yourself. I belong to several Lyme Facebook groups and I see a lot of people expressing their dismay at not being good enough wives or husbands or mothers or fathers or sisters or brothers or whatever.

For those who feel this way, give yourself an important gift this Christmas. Look in the mirror and repeat these words. “It’s not my fault. It’s not my fault.” You got sick with a serious illness that limits what you’re able to do. IT IS NOT YOUR FAULT.

#7 – AVOID focusing too much on Lyme. Fighting Lyme is such a full-time job that this one can be difficult. But it helps a lot if you can work towards having as full a life as possible with Lyme being only one component of it. Maybe try setting aside one day a week when you don’t say the L word or even think about it. Maybe Christmas day would be a good day to start.

Photo: shonna1968

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