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

7 Myths That Can Steal Lyme Recoveries

Sorting out truth and myth is itself one of the keys to overcoming Lyme disease. And it’s not easy to do because considering how prevalent the disease is, the medical community hasn’t given it the research priority it deserves.

So a lot of my myth busting comes from many hours of reading the information that does exist and from personal experience.

Myth #1 – There’s no such thing as chronic Lyme disease. The grandaddy of the myths. My experience is that I received a clinical diagnosis of Lyme and received lengthy treatments of both antibiotics and antibiotic herbs for Lyme. More than a year after that, I tested positive for Lyme and several co-infections. That’s not iron-clad proof, but it sure looks a lot like chronic Lyme. Scores of others have similar tales.

Some doctors still hold to the “no such thing” mantra, while others have accepted recent science that shows Lyme bacteria can persist after treatment. So maybe we can call it “persistent Lyme” and stop  arguing about it and have everyone place their attention on dealing with the problem.

Myth #2 – Long-term antibiotics don’t work for persistent Lyme. A recent study published in The New England Journal of Medicine said that three months of antibiotics were not effective in treating Lyme in patients with lingering symptoms. Other major studies done in past years show mixed results. Some say long-term antibiotics do help, some say they don’t.

From information gathered from books, articles, and interviews by leading Lyme doctors and from reading testimonials, it seems the truth is that long-term antibiotics can, and often do, work. There are also many instances when they don’t work. It seems to depend on many factors, such as the practitioner’s skill in choosing the antibiotics, the patient’s compliance, and the patient’s willingness to work on many other things such as diet optimization and detoxification.

Myth #3 – Herbs don’t work for persistent Lyme. Shortly after I got sick, a naturopathic doctor told me “Herbs don’t work.” Well, I think he was wrong. After much study into the matter, and after using  a lot of herbs myself, I’d say herbs do work for many people, but they have to be extremely high-quality herbs, chosen by expert herbalists, and, preferably, administered by expert practitioners. Fortunately, the Lyme community has access to the Cowden, Buhner, Zhang  and Jernigan herbal protocols, along with other outstanding herbal products from Byron White, Beyond Balance and many others.

Myth #4 – It costs too much to eat a healthy diet. It’s probably true that crappy food is usually cheaper than healthy food, but with a bit of time and effort, good food can be found at a good price.

Health experts agree that vegetables are the centrepiece of eating well, and many people have the option of growing their own. Finding a local farmer’s market or a good fruit and vegetable store  are other good ideas. Fortunately, many of the vegetables best suited to Lyme patients, like garlic, onions, broccoli, and cabbage, are cheap. I eat three  veggies with my evening meal and they cost about a quarter a serving.

The two pieces of fruit I eat daily cost a bit more than that, but they too are cheap if you shop around and pick out specials. I also choose the smallest pieces of fruit in the bin, which reduces cost and sugar intake. I further save money by snacking on sunflower and pumpkin seeds, which cost about 25 cents a handful (note: all prices mentioned in this post are in Canadian dollars).

Choosing organic food is optimal, but that often is too expensive for many people. Still, keep an eye out for specials. I’ve often seen organic produce on sale that costs less than the same store’s conventional produce.

Myth #5 – It costs too much to use natural cleaning and personal care products. Reducing your toxic load is a key factor in fighting Lyme. Most commercial  cleaning and personal care brands contain many toxins, so it makes sense to look for natural alternatives. The Environmental Working Group’s website, ewg.org, is a good place to find substitutes.

But can you afford them? Probably yes. I made the switch, and it costs me roughly $100 a year. To do that, I needed to shop around a bit. Doing this, I’ve found it much cheaper to buy supplies at supermarkets, which have bulk buying power, rather than at health food stores. Also, I’m fortunate to be near stores which sell the Nature Clean line of products, which I find to be reasonably priced, effective and truly green.

Myth #6 – Gluten free is unaffordable. Many Lyme practitioners tell patients they need to eat gluten free in order to get well. Then the patients go to the supermarket and see the prices on foods marked gluten free. That makes them feel about as sick to their stomach as the gluten itself might make them feel. The answer to this dilemma? Eat basic foods that don’t have gluten in them. There are lots of them, such as vegetables, fruits, fresh meats, fish, and nuts and seeds. I find I can eat my fill of these sorts of foods for about $10 a day.

Myth #7 –  Some people are too far gone to ever recover from Lyme. Let’s just say I believe in miracles. I’m one of those people everyone had counted out. I had been housebound, spending about 22 hours a day in bed, for seven years. During that time, it would be a good week when I could talk on the phone for 20 minutes and watch TV for half an hour (that’s over the span of the entire week). I wrote about how I emerged from that hole in a post back in March called “5 things that got me out of Lyme hell”. The moral of that story is never, ever, give up. You never know when something totally unexpected will happen to lift you out of the pit.

Graphic: Nevit Dilmen

Life Lessons from Lyme

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Photo: Eric Davidson

LDI: What I’ve learned

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

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

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

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

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

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

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

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

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

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

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

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

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

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