LDI: Glad I didn’t quit

Okay. Raise your hands. How many of you doing Low Dose Immunotherapy have thought of giving up on it?

I know I did, and I think I’m far from being alone. LDI can be a fantastic treatment for Lyme Disease and other illnesses, but it can be very hard to get it to work.

Finding the core dose is key, and that can take a painfully long time to settle on. It took me more than a year of tries that often ended up with me feeling a lot worse than I wanted to feel.

For those unfamiliar with LDI, it’s a relatively new treatment most often used for Lyme and its co-infections, but it also can be applied to many other things. The idea is to get the body to stop overreacting to whatever the problem is and react in proper measure.

This is done by giving patients incredibly diluted substances (we’re talking one part per one hundred millionth and less). These dilutions are made from deadened pathogens and prepared in homeopathic fashion. The most commonly used one is the Lyme mix, which  consists of 74 species that include the Lyme bacteria (Borrelia), along with species of Bartonella, Babesia,  Ehrlichia and Coxiella.

I started nearly two and a half years ago with the Lyme mix at the 15C dose, which caused a moderate aggravation of symptoms. But I was told this was good news, as a reaction meant I was responding to treatment, and that eventually I’d find the right dose.

One of the difficult things about LDI is if you have a symptom aggravation, known as a flare, you have to wait seven weeks until you can take the next dose. The theory is that the immune system is not ready for another dose until this period is up.

What keeps you going during these long stretches is hearing stories of others who’ve had phenomenal results with LDI. And these are fairly common tales of people who had all but lost hope, and then suddenly started to get much, much better. Very good things can happen when an out of control immune system gets back in sync.

So I went down to 17C the next time. This time the results were mixed. Some things were better, some things worse. My doctor called it a mild flare.

Following that came 19C. It didn’t seem to do much, so we tried 18C. That was on the whole positive and I felt somewhat better, but we thought we could do better.

By this time, more than half a year had passed. I was starting to wonder if my efforts couldn’t be better spent focusing on other treatments. All in all, I felt my condition had modestly improved, but was it enough to bother continuing?

We decided to reduce the dose to 17C again. This is where LDI can get confusing. This time 17C worked better than it had the time before, and since I continued to feel a bit better it seemed this might be the core dose.

But why was 17C more effective this time? Maybe my body had become stronger and better able to handle a stronger dose. Maybe my microbial load had dropped.

And maybe it was one of a million other possible reasons. LDI uses a homeopathic dose, and in my experience with homeopathic dosing I’ve found it highly unpredictable. It is to medicine what the knuckleball is to baseball pitching. When you let it fly, you can never be sure what’s going to happen.

So next came 16C and that was too strong. Nothing dramatic but I felt like I was carrying a heavy backpack around the next 10 days.

At this point, I’d tried everything from 15 to 19C, and it looked like there was going to be no miracle for me. I fell into probably the same category as most people. For me, the LDI Lyme mix had become a helpful treatment that reduced my overreactivity and brought about improvement in my condition.

So after conferring with my doctor and looking back over my symptom journal many times,  I decided to make a conservative move and go back to 18C. That seemed to work well. I clearly felt better taking that dose than I would have if I hadn’t taken it. A 17C dose might have been slightly better or slightly worse. But looking over my journal it looked like the results from 18C were slightly better than 17C, so 18C it would be. The core dose was finally decided.

I also wanted to settle on a core dose for the Lyme mix, because I wanted a clear field to try the yeast mix, which was also said to bring about big gains for many people.

After taking a year to find the right number for the Lyme mix, I lucked out on the yeast. This time 10C was our first choice and I clearly felt a lot better on it. We decided that we’d found the core dose on try number one.

Like I said earlier, I’m glad I didn’t quit because while I haven’t experienced any jaw- dropping results, I have made steady progress on LDI. I’m considerably stronger than when I started and better able to handle whatever life throws at me. I’m also less likely to overreact to either pathogens or to allergens, so I have far fewer bad days than I used to and the bad days are a lot less bad.

I’ve come to believe LDI is a valuable treatment primarily because I agree with many Lyme doctors (Dr. Dietrich Klinghardt being one of the most notable) who in recent years have concluded that the biggest problem with this disease isn’t the bugs, it’s the body overreacting to the bugs.

If you can’t get your body to stop overreacting, then even if you kill some bugs and that gives you a spurt of energy, your body is likely going to fritter that energy away by overreacting to something. It’s like giving a compulsive gambler a whack of spending money. Pretty soon it’s all gone.

The other reason I like LDI is that there are very few other things that can reliably get my body to stop overreacting. So mark me down as a satisfied customer.

But like I said, LDI can be very unpredictable. Next week, I’m going to add in the antigen for Mycoplasma. I’ve tested positive for the nasty fermentans strain of this bug, and I’ve been hesitant to take it on. Still, after nearly two and a half years of doing this treatment, I feel confident that I’ll be able to handle this one. Wish me luck.

 

 

 

 

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A Tasty Way to Kill Lyme

I certainly wasn’t expecting my Easter dinner to attack a bunch of Lyme spirochetes, but that seems to be exactly what happened.

Bear with me, because this is going to be a bit unusual. Now how, you ask, did an Easter meal have any affect on Lyme Disease? Did the chocolate bunny kick butt?

OK. Here’s my answer. It was a really nice meal – ham with baked beans, yams and broccoli. As an added touch, I drizzled about a teaspoon of maple syrup over the ham.

I would have used more, but those of us going through Lyme treatment are told to keep sugar to a minimum.

Just before bed, I noticed that my urine was extremely murky. I rarely see that, and for me it is a sign of Lyme spirochetes being attacked.

I’ll back up a bit. I’ve tried many approaches to treating Lyme, and one of those was a trial with Rife machines. For some of you this may seem even more weird, but there are scores of Lyme sufferers who have been greatly helped or even achieved remission using Rife.

In brief, a Rife machine directs an electromagnetic current at specific frequencies in the body. The Lyme bacteria, borrelia, can be found at some of these frequencies. Zap the borrelia and you kill some Lyme. You’ve got to do a lot of zapping over a long period of time to get results, but it works very well for some people.

When I did a trial with the Rife machine, something funny happened. Right afterwards, my urine was very murky. I tried the machine again a month or so later and the same thing happened. Up until that point, I’d never really noticed having really murky pee.

I didn’t further pursue Rife then, as other treatments seemed better suited to my situation. But I did make a mental note that there seemed to be a correlation between killing borrelia and murky pee.

So that brings me back to Easter 2017. Not only was my urine murky before bed, but it was even murkier when I peed in the middle of the night. “Weird,” I said to myself and went back to sleep. I didn’t think it was significant, as I put it on the list of the dozens of strange and inexplicable things that have happened to me on my Lyme journey.

Then on Easter Monday came a surprise.

I was reading the book How Can I Get Better? by famous Lyme doctor, Richard Horowitz, MD. On page 79, he lists several substances that break up Lyme biofilms and in the process kill borrelia. Biofilms are colonies of bacteria that grow in various places in humans. Dental plaque is an example.

Anyway, one of those substances on Horowitz’s list was maple syrup extract.

So it was the maple syrup!

Intrigued, I Googled maple syrup, Lyme Disease and biofilm, and I came upon a 2015 study from McGill University in Montreal, Canada. It found that maple syrup was an effective antibacterial substance, and when used along with antibiotics it could make the antibiotics more potent. The study also discovered maple syrup was an effective biofilm buster.

The McGill research was done in the lab and not on human subjects, but it is still very promising. And in recent years, more and more natural substances have been found useful for treating Lyme.

The natural sweetener Stevia has recently been shown to have powerful effects on biofilm. There are also, of course, several effective natural approaches to treating Lyme that have already been developed, such as the Buhner, Cowden, Zhang, Byron White and Beyond Balance protocols.

So the moral of this story is not that a little maple syrup is going to cure you of Lyme. It’s that there are probably many other natural things that are effective at treating Lyme. What’s needed is more research to find out just what these are and how best to integrate them into protocols. We need as many weapons as we can find in this war, and if they taste good, that’s very good indeed.

 

 

LDI: Using Data To Help Figure This Out

If everything goes the way it’s supposed to, Low Dose Immunotherapy can be very simple. Take the dose, feel better.

But I don’t think I’m the only one whose LDI journey has been anything but straightforward. For me, it’s been very, very complicated.

That’s why I’ve started using data to help sort out how my body is reacting as I seek to find the magical core dose.

For those not familiar with LDI, it’s used for many diseases and disorders, but primarily for Lyme Disease and its co-infections. Patients are given, by injection or sublingually, minute doses of deadened microbes such as Borrelia, Bartonella, Babesia, and Ehrlichia.

Doses are prepared in homeopathic dilutions and range from the strongest, about 6 C, to the weakest, about 30 C.

Finding the correct dose is key. Hit it just right and a very sick Lyme patient can see symptoms disappear. This is known as the core dose, and if everything goes well, taking that core dose repeatedly over seven-week periods can lead to complete remission.

When I say I’m using data, I mean very basic statistics drawn from my daily symptom journal. There are two key factors involved in a person’s response to the dose: how you feel and how reactive your immune system is.

LDI theorizes that people with Lyme and co-infections are sick not because of the bugs, but because their immune systems are overreacting to the bugs. The goal of treatment is to prod the immune system to react properly to these pathogens and enable the body to heal.

After taking the dose, the practitioner mainly wants to know if the patient felt better afterward or had a negative reaction (called a “flare” of symptoms), in response. If the patient felt better without having a flare, it is generally thought they’ve found their core dose. If there is a flare, a weaker dose usually will be tried seven weeks later.

I use the stats I keep both as information to provide to the practitioner who decides which dose to give, and as a way of looking at overall patterns of how each dose has affected me. This information can be very useful if and when LDI gets complicated. Sometimes doses you thought were core doses didn’t turn out that way, and sometimes it just takes a long time to find the core dose.

The stats I keep measure how I feel in the 7-day period before the shot, the 10-day period following the shot (most people are likely to react positively or negatively during this time frame), and the 7-day periods following that. I could use a 1 to 10 scale, but I try to keep things simple, so I divide it into days in which I feel pretty well and days I don’t feel pretty well.

For immune overactivity, I do the same thing, breaking it down into whether or not I had or didn’t have symptoms of immune overactivity during the above-mentioned periods. One example of a symptom of immune overactivity for me is mild pain in the left knee and thigh. Over the course of a year, I have symptoms of immune overactivity roughly one of every two days.

I’ve taken doses ranging from 15C to 19 C and still haven’t found my core dose, or at least I don’t think I have. Sometimes it’s hard to tell.

I just missed on 18C, feeling better for the first week, but then flaring mildly the last three days of the 10-day period. And the 19C may have been it. I wasn’t feeling well in the week before the shot, and then I felt considerably better after the shot. I had some mild negative symptoms as well, but did they constitute a flare? It’s hard to say because I also had a lot of negative symptoms in the week leading up to the shot.

See what I mean by complicated.

To give you an example of how I use statistics I’ll give my 18C and 19C shots as case studies.

For the 18C dose, I felt pretty well 7 of 7 days prior to the shot. Then I felt pretty well 8 of 10 days following the shot despite mild flaring. But overall I felt slightly better during the period after the shot than the period before. Also during the 10 days following the shot, I had symptoms of immune overactivity on three days.

For the 19C dose, I felt pretty well on only 1 of 7 days before the shot. But I felt pretty well 7 of 10 days after the shot. And during those 10 days following the shot, I had symptoms of immune overactivity on four days.

So you can look at the numbers one way and say that the 19C shot clearly made me feel better than I had the week before. But there was mild flaring. There also was some immune overactivity, but less than usual.

The 18C dose also made me feel better than usual overall, but the change wasn’t as dramatic as with the 19C dose. And there was some mild flaring, although there was again generally less immune overactivity than usual.

Technically, neither shot met the general criteria of a core dose as I had mild flaring each time. But both times the 18C and 19C doses made me feel better generally and they reduced overall immune overactivity.

I’d love to get reader input as I contemplate an upcoming shot. Should I ask my practitioner for an 18C or 19C dose, or should I go for a weaker 20C dose? I’d greatly appreciate it if you could leave a comment letting me know what you think.

Choosing a Living Space That Helps You Heal

My preference would be to own a nice house, complete with wife, picket fence, and a couple of kids. But Lyme Disease hasn’t cooperated with that plan.

Instead, I’ve become a bit of a nomad. Because the disease has drastically eaten into my savings, I’m a renter. And because of the need to find affordable, mold-free housing, I’ve moved several times in recent years.

The upside is that I’ve found the type of place that best suits me in my fight to defeat Lyme and regain full health. I don’t think I’m much different than a lot of people with this illness, so what I’ve found out might help you too.

I’ve learned that where I live makes a huge difference in how effectively I battle Lyme. My Lyme-literate M.D., who is a specialist in Environmental Medicine, has said this to me several times. Now I’ve learned from experience that she’s right.

Because Borrelia Burgdorferi hates oxygen, I seek oxygen. Thus I like places that have a lot of windows I can open. While most people want their living spaces airtight to save on heating costs, I prefer lots of cracks to let more fresh air in. I don’t mind putting on a sweatshirt. I like sweatshirts.

Because mold and bacteria tend to grow in the dark, having many windows also is important for letting in plenty of sunshine. Having lots of light kills microbes and it also helps prevent depression, which often comes with the disease.

Mold is a difficult subject. Some Lyme doctors say it’s impossible to get better if you’re living in a moldy space, while all agree that mold makes a return to health more difficult. Studies show that roughly half of dwellings have had water intrusion at some point or other. This often will lead to mold problems.

So mold is a hard thing to avoid. I lived in one place for six months, wondering why the pace of my healing had slowed. Then the landlord pulled up the carpet in my bedroom. Horror of horrors. A black, five-foot long spot of mold in the corner of the room. I soon moved out.

It surprised me because I’d done a lot of research on mold, and I thought I knew how to steer clear of it. But unless you can afford to have a mold inspector check the place out beforehand, all you can do is study the subject, inspect the place yourself, quiz the landlord, and hope for the best.

Before getting Lyme I preferred a big place, but I’ve since changed my view. Smaller is easier to manage, easier to clean, and uses up a lot less precious energy. Reducing possessions also has been helpful. The less stuff you have, the less stuff you have to trigger allergies, outgas toxins, and gather dust, mold, and microbes.

Focusing on the bedroom is crucial because that’s where I spend the most time. I try to keep it as free of stuff as possible and as clean as possible. Having hardwood floors, both in the bedroom and in the main rooms, helps a lot too. Even before I got sick I much preferred hardwood to carpets, which contain toxic chemicals and attract mold, dust, and microbes.

The best place I’ve lived had a small bedroom with hardwood floors and only basic furnishing. It also had a big west-facing window that let in tons of fresh air and warm afternoon sunlight to naturally clean and freshen the room.

Clean air is a major priority. I once liked being downtown where a lot more is happening. But now I’m a suburbanite, looking for places on tidy streets far away from the noise and pollution of major arteries and highways.

I’m also a short driving distance to a beach, which I now consider an essential factor when looking for a place. I’ve clearly noticed major increments in health improvement when I can spend a lot of time at the beach.

Parks are good, but beaches are way better. You get more Vitamin D from the sun when trees aren’t blocking your path to it, and the breeze coming off the water blows allergens out of the way. And, like most people, I find that being at the beach is just plain fun and relaxing.

There are, of course, other factors to consider. To help sort it all out, I’ve developed a checklist I take to every apartment I look at.

Whether the place has forced-air gas or electric heating is an important consideration. I prefer radiators and electric heating (especially if the landlord is paying for it) instead of forced-air, which can blow unwanted mold and toxins into the main rooms. I also prefer an apartment in a house, or at worst a small apartment building, so I’m not in the wi-fi soup that comes with big apartment buildings.

Many Lyme experts, like Dietrich Klinghardt, MD, emphasize how bad wi-fi and other sources of electromagnetic radiation are for Lyme patients. So it’s ideal if the place can be hooked up with cable for Internet and a landline for phone needs. Checking around the neighborhood to make sure there are no cell towers or banks of high voltage power lines nearby is another good idea.

Another potential pitfall may crop up if you have allergies, which many Lyme patients do. Trees, flowers, and shrubs are beautiful, but they can cause severe allergy problems if your bedroom happens to be very close to them. If you are on a lower floor, you should be especially careful about not having a lot of trees just outside your window that shed leaves in the fall. That can create a serious mold hazard.

Having to keep all these factors in mind makes apartment hunting something anyone with Lyme would rather avoid. I’d be thrilled if my health status suddenly jumped from getting much better to total remission and I could again dream of buying a house. Until that happens, though, I always have my healthy apartment checklist ready in case this disease forces me to look to rent somewhere else.

 

Seven Things My Lyme Doc Taught Me

It took me a long time to find her, but I am fortunate to say that I have a good Lyme-literate medical doctor (LLMD) who has taught me a lot of important things.

If my count is right, she was the 14th doctor I saw before finding someone who was able to help me. Sounds like a lot, but many Lyme patients have a longer list. She could help because she had been through something similar herself, and had the knowledge and compassion to be able to help others get through their ordeals.

So what has she taught me? Probably more than I’m outlining below, but these are the things that come to mind.

#1 – A LOT OF THIS IS ABOUT TOTAL LOAD – Total load means the total amount to stressors your body is facing. Obviously, Lyme is a big stressor. So if you have Lyme, you have to reduce the other stressors.

Doctors who subscribe to the total load theory use the rain barrow analogy. Stressors are like rain that falls into a rain barrow. As long as the rain stays in the barrow you’re OK. But too much rain (i.e. stressors) and the barrow overflows. That’s when you get symptoms.

There’s no shortage of stressors – Lyme, other infections, emotional and physical stress, heavy metals, pesticides, poor diet, dental amalgam fillings and other dental problems, candida, etc., etc. One of the keys to getting healthy is eliminating and reducing stressors and keeping the water from spilling out of the barrow.

#2 – B VITAMIN SHOTS CAN HELP A LOT – One doctor told me not to bother with B12 shots because he said I didn’t need them. Another doctor told me B12 shots were quackery. But my doctor said I should try both B12 and B complex injections. She was right. They helped a lot, giving me some energy at a time when that commodity was worth about a million dollars an ounce to me.

#3 – CATCHING COLDS OFTEN MEANS YOU MADE A MISTAKE – During one of our visits, my doctor was chastising herself for getting a cold. Turns out she felt she made a mistake.

I’d always thought catching a cold or the flu was an accident that couldn’t be helped. But I now see it as something that’s an unavoidable accident about half the time and an avoidable mistake the other half.

Maybe I forgot to wash my hands after being in public during cold and flu season, maybe I skimped on sleep and my immune system suffered, maybe I got stressed out on a day when I felt the first sign of a tickle in my throat. Or maybe something else. This doesn’t mean being a germophobe, it just means that when you have a serious illness like Lyme, you need to be careful to not pick up other infections.

#4 – YOU CAN IMPROVE YOUR EYESIGHT – I’ve always been looking for ways to improve my vision, and I’ve asked several eye doctors this question. They all say there’s nothing you can do.

Not true, says my doctor. She had a strong prescription of -5.50 that fell to a moderate -2.50. That’s a huge drop. She said she did it by gradually healing infections in her body and eyes, taking a lot of antioxidants and intravenous vitamin and mineral infusions.

#5 – PUT THE TOILET LID DOWN EVERY TIME YOU FLUSH – This thought had never occurred to me. But one day I noticed a clipping on her office billboard showing results from a study that showed flushing with the toilet lid up results in a slew of often pathogenic bacteria flying around your bathroom. I’m not sure how much effect this has on total load, but every bit counts.

#6 – EAT ALL YOUR FOOD DURING A SHORT PERIOD OF THE DAY – I’m not sure if this works for everyone, but it works for me. The theory is that your body likes having a decent sized mini-fast every day. I’d mentioned I was having gut symptoms, so my doctor suggested trying to eat all my food in an 8-12 hour window each day.

Eight hours is tough to manage, but most days I eat my food in an 11-hour period and give my body 13 hours to fully digest it and work everything out. Doing this has helped reduce my gut symptoms.

#`7 – NEVER GIVE UP – My doctor has told me stories of her own desperate efforts to stay alive so her young son wouldn’t lose his mother. She never gave up and taught me the same.

The truth with Lyme is you never know when things are going to turn around in your favor. There are umpteen ways of treating it, and if you keep trying, you’re likely to find one that will work for you. So there’s good reason not to give up. It also helps, a lot, to find a doctor who won’t give up on you. When I was down and out and bedridden, my doctor made 10 house calls to try to get me back on my feet. That’s right. House calls. I told you I was fortunate.

Stephen Buhner vs. The Lyme Conventional Wisdom

You can approach treating Lyme Disease in two basic ways. First, you can look at it purely as a science. Or, you can look at it as partly a science and partly an art.

The conventional wisdom says go strictly with science. Over the past few decades since Lyme hit the map, Western medicine has developed treatment strategies that for the most part fit the disease into its existing paradigm.

It goes something like this. We’ve discovered Lyme is a bacterial infection. We test for it. If the test is positive, we throw antibiotics at  it.

This works great for some people, but it doesn’t work very well for a lot of other people.

Enter Stephen Buhner, master herbalist and author. He is far from the only proponent of the science plus art approach, but no one has done more to champion it.

Among his books are two editions of Healing Lyme, plus two books on treating coinfections associated with Lyme. If you read these works carefully, you’ll clearly see how different his way of treating Lyme is from the conventional wisdom.

It’s not that Buhner isn’t scientific. He worked from 1980 to 2005 as a clinical herbalist and psychotherapist and also has treated many Lyme patients since. In Healing Lyme, Second Edition, he says that he has had contact with more than 25,000 people with Lyme and has read more than 10,000 peer-reviewed papers on Lyme.

In this book, he also gives some stats on his Lyme protocol’s success, saying that from the feedback he received from 2005-2015. he estimates that 75 percent of people experienced what they considered a cure from the program, 15 percent needed to continue with a reduced form of the protocol, 5 percent had some relief, and 5 percent got no help.

The purpose of this blog is to highlight the differences in the two approaches. As mentioned earlier, the conventional wisdom has worked well for many people, while Buhner’s way has helped many others.

I should mention that I’m referring to the conventional wisdom for treating persistent, or chronic, Lyme. It should also be noted that not all Lyme doctors fall completely into one camp or another. Some are a totally conventional, some a bit unconventional, and others quite a bit unconventional in their treatment methods.

But, for the sake of comparison, here’s how I see the main differences between Buhner and the conventional Lyme wisdom.

Conventional wisdom: Only antibiotics will cure Lyme.

Buhner: Lyme can be cured by using herbs and other natural products. Several natural protocols have been developed  by Buhner and by others, and one particular protocol may or may not work for one person, and another protocol may or may not work for another person.

Buhner is not against antibiotics. He says they work very well for some people and they can be combined with herbs, but they often aren’t necessary.

Conventional wisdom: Fighting Lyme is like fighting a conventional war. You have to keep blasting away at the bugs until they are defeated. Sometimes this means taking high doses of antibiotics for a year or more.

Buhner: Fighting Lyme is like a guerrilla war. You have to outsmart the bugs. The goal isn’t to bludgeon the enemy into submission, it’s to understand what the bugs want and need from their hosts and to find ways to deny those needs and prevent them proliferating.

Conventional wisdom: Strong and highly unpleasant die-off (Herxheimer) reactions are an unfortunate, but necessary, part of getting well from Lyme.

Buhner: Herxheimer reactions aren’t necessary. They sometimes happen, but you should try to avoid them.

Conventional wisdom: The doctor creates the protocol and the patient doesn’t deviate from it.

Buhner: Patients should listen to their bodies and tweak their protocols according to what works best for them. Having patients educate themselves and develop a feel for how herbs and natural products interact with their bodies is a crucial part of treatment.

Conventional wisdom: Patients need to push themselves and fight through difficult patches in treatment.

Buhner: Only go as fast as your body is telling you to go. If an herb is making you feel significantly unwell, back off and cut down on the dose.

So now that I’ve gone through the main differences in approaches, I’ll admit to having a bias. The conventional wisdom didn’t work well for me. Buhner’s protocols haven’t gotten me fully well, yet, but they have contributed to substantial improvement.

I also find the Buhner model more sustainable. Going on long-term antibiotic programs wreaks havoc on many body systems, especially the gut, and nobody knows what long-term effects that will have.

The conventional wisdom approach is also hard on the human spirit. The consequence of taking antibiotics long-term is often feeling awful day after day, month after month. Many times the treatment feels worse than the disease.

A lot has changed since the first edition of Healing Lyme came out in 2005. The trend in the conventional wisdom among leading Lyme doctors has slowly been moving in Buhner’s direction.

Herbs and other natural products are more commonly used as many doctors are now willing to look beyond solely an antibiotic approach. And this makes sense to my mind. Buhner strikes me as someone who has studied Lyme Disease as thoroughly as anyone and understands it as well as anyone, and people should look closely at what he’s doing.

The Lyme bacteria is known as one of the most intelligent and resourceful of bugs, and the conventional wisdom approach hasn’t stopped it from spreading rapidly worldwide. One hopes that more people like Buhner will step forward and put the focus on figuring  out more new and perhaps unorthodox ways to neutralize Lyme and reduce the tremendous damage it is causing around the globe.

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