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How LDI Works In Me

My 14 months on Low Dose Immunotherapy have been a good news-bad news kind of thing.

The good news is that it’s working.

The bad news is that it isn’t working as well as I’d like, and it definitely isn’t working the way LDI’s inventor, Dr. Ty Vincent, says it should work.

LDI is used for many diseases and disorders, but primarily for Lyme Disease and 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 about 6 C to about 30 C. With the 6 C potency, the actual substance of the deadened microbes is one part in a trillion, according to Wikipedia. By the time it gets to 30 C, it is believed there is no substance left at all, only energy. Many scientists think this is hogwash, but countless people who’ve taken homeopathic potencies will tell you the effects are very real.

Finding the correct dose is key. Hit it just right and a very sick Lyme patient can see symptoms reduce or even 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.

So that’s how you write it out on the blackboard.

Here’s how it works in me.

LDI isn’t technically homeopathy, it’s an immunotherapy technique that aims to treat a variety of diseases. Its goal is to get the immune system to react properly to Lyme or co-infections or whatever it’s troubled with, and not overreact.

But the doses are formulated in homeopathic fashion, and as well-known Lyme physician, Dr. Dietrich Klinghardt, has remarked, using homeopathy to treat Lyme and co-infections is not new. The way Dr. Vincent developed it, however, using a batch of 74 different deadened microbes (representing many species of Lyme and co-infections) all at once in a dose is new.

I’ve taken eight doses now, ranging from 15 to 19 C (some of these have been halfway doses like 16.5 and some have been the same potency taken twice), and I’ve written detailed notes each time of how my body has reacted. So I think I have a decent read on what’s happening.

I have yet to meet Dr. Vincent’s criteria for hitting the core dose, which is feeling better and not having any flaring of symptoms. I’m not sure why this is, but maybe it’s just the way I am. There’s a good chance I’ve had Lyme since I was very young, and it’s contributed to making my system highly sensitive. I react to just about every medication or treatment thrown at me. I once had a flare-up after eating a peppermint.

The way LDI has worked in me, however, is more in line with how things work in traditional homeopathy.

Homeopaths call these potencies of deadened microbes nosodes. I’ve talked to a number of homeopaths, and they’ve told me the purpose of nosodes is to activate the immune system to take on pathogens. The idea is to gradually reduce the number of pathogens in this way.

This seems to be what’s happening with me. Each time I’ve taken a dose, I’ve felt an increase in symptoms, things like rashes, mild nausea, sore neck and shoulders, and temporary increases in fatigue. Generally speaking, the stronger the dose, the more symptoms I’ve experienced.

These symptoms, fortunately, haven’t been extreme, and I haven’t experienced any setbacks. The symptoms tend to disappear after a week or 10 days, and then I seem to feel better than usual for the next little while. This period of improvement has lasted anywhere from a few days to a month depending on the injection. It’s in these times I notice that my immune system is less overreactive.

After 14 months on LDI , I’ve had several noticeable improvements. My strength and stamina are better. I can do more exercise. I have less brain fog. In fact, I have practically no brain fog now. Overall, my health has improved, although, again, not as much as I’d like. I have reason to believe that I am indeed slowly reducing the pathogenic load that I’m carrying.

So I hope this offers some encouragement to others like me who haven’t found the elusive core dose. I may just be an outlier, but it seems to me that LDI can still work even when it isn’t working the way it should work.

Photo: Mike Licht, notionscapital.com

Getting good with God

“Are you mad at God?”

My answer started with about a minute of silence. I hadn’t thought of that before until a pastor friend asked me one morning.

During that minute, I thought back to some of the difficult things I’d been through in my Lyme disease battle.

I’d lost my health, my marriage, and my ability to work. I’d had to move three hours away from my son and my friends to live with my parents because I wasn’t able to take care of myself. I had become disabled and lost my ability to do a bunch of things I loved to do. And I’d lost an awful lot of money as well.

“Yes,” I said. “I think I am mad at God.”

I suspect a lot of people who have struggled with Lyme and co-infections would answer the same way.

If you believe in God, then you probably believe that God could have spared you from all the misery you’ve experienced. And if you are a praying person, you’ve probably asked Him why.

I’m not the type who shakes his fist at the sky or anywhere else for that matter, so I’ve had to work through the problem in other ways.

The book of Job in the Bible is perhaps the only place where God clearly deals with the question of why bad things happen to people for no apparent reason. Job was singled out as one of God’s all-time favorites, a man beyond reproach, but he gets pelted with horror after horror. His wife advised him to “curse God and die.”

Job didn’t do that, but he did complain about God. Then, at the end of the book, God appears and has His say.

He starts a lengthy discourse by saying, “Where were you Job when I laid the foundations of the earth?” By the time He finishes speaking, His point is clear. He is so far above us that we cannot possibly understand His ways. If it had been the 21st century, He might have said, “Job, you’re just not wired to understand this.”

I believe that Job’s reply is also crucial for anyone trying to come to grips with terrible things that have happened to them. He starts by saying, “Behold, I am of little importance,” and shortly afterward adds, “I have uttered that which I don’t understand.”

The first point is that Job, like us, is only a human being. There’s a cliche that we are the clay and God is the potter, but I think it’s true. I believe that human beings have tremendous value, but in the overall scheme of things, it’s not all about us.

His second point is accepting God’s point about him not understanding. This, I feel, is the biggest key to working through anger toward the Almighty.

If you accept the scriptural view that God’s ways are so far above ours that we can’t possibly comprehend them, then you can say to yourself that there was a reason you went through this hell, although you may never know what it is.

I know a guy who lost his wife to cancer at a young age. She had two small children when diagnosed, and she went through agony hanging on to life long enough to be there for her kids as long as possible. After watching that play out year after year, he became bitter toward God and lost interest in the Christian life.

It seems to me that he’s giving up a lot. I can see things more objectively when I’m looking at it through the lens of another person’s experience rather than mine. My faith and my relationship with God are two of the most important parts of my life. They are things that I want to keep, no matter what.

So am I still mad at God? I don’t think so, but I can’t say for sure. I’ve worked through this to some degree, but it’s difficult to know how I feel in the depths of my being. Still, like Job, I can now honestly say I understand and accept that there are some things that I’ll never be able to understand; and that’s okay.

Photo: Eric Davidson

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

Summer break! – Time to get outside

It’s ironic that something that increases your risk for Lyme is also something that’s very helpful for healing Lyme.

The crime many Lyme sufferers committed was having a love of fresh air and sunshine. If they’d stayed inside all the time, they probably wouldn’t have gotten Lyme in the first place.

But for me, having Lyme hasn’t killed my love of nature. In fact, I feel a lot better when I spend time outdoors. So that means I’ll be spending a lot more time doing that in the upcoming warm months and less time sitting inside blogging.

Thus, lymetips.com is on summer vacation. I may post a few times if something special comes up, but the plan is to increase the pace of healing by getting as much sunshine, fresh air and exercise as I can tolerate.

See you at the beach! And don’t forget the bug spray!

Photo: Eric Davidson

10 Keys to Beating Lyme

Everyone with Lyme disease knows how important things such as taking antibiotics and finding an excellent health care practitioner can be.

There are, however, many other factors involved in fighting Lyme that also make a huge difference. In my struggles with the disease, I can think of 10 things that have helped a lot.

I’ll start with love, as it is often called the great healer.

Love

You might think this is obvious. Having Lyme disease, however, can make it much more difficult to receive and generate love. The Lyme patient needs to recognize this and place a priority on maintaining and deepening important relationships.

Many people don’t understand how serious Lyme can be. Lyme sufferers are often sicker than people with cancer, but friends and family sometimes don’t realize this. In most cases, everyone rallies around a cancer patient. Often, this doesn’t happen with a Lyme patient.

In many instances, a person with Lyme must reach out to family and friends to keep relationships in good condition. It isn’t easy to accomplish this when you have little energy. If you can do it, however, it’s worth the effort.

Living in a Healthy Place

Most people spend the majority of time at home. This makes it critical that your home is a healthy place to live.

Because various Lyme-related issues have forced me to move many times, I’ve learned which type of places are healthiest for me. The places I like allow for lots of light and fresh air. They tend to have hardwood floors, not carpets.

It’s important to keep living spaces clean and uncluttered to limit problems with allergens such as dust and mold. As well, I find relatively small houses and apartments much easier to keep clean and free of allergens. I also place special emphasis on the bedroom when creating a healthy living space, as, like most people, I spend much of my time there.

Mold Avoidance

Many top Lyme physicians say mold is a leading reason some patients don’t get well despite taking large quantities of antibiotics.

Strict avoidance is the best approach to mold. Stay away from places that smell moldy or musty. If your house or apartment is moldy, seek out a mold expert who can determine which measures you should take. If you try to remediate the problem, proceed cautiously, because a poor job of mold removal can release many toxic mold spores and make things worse.

You can learn more about this subject at http://www.survivingmold.com. Dr. Ritchie Shoemaker, a mold treatment pioneer, founded this site.

Toxin Avoidance

We live on a toxic planet. There are toxins in the air, in food, in household chemicals, in building supplies, and just about everywhere else.

It can seem overwhelming, but it’s important to avoid toxins whenever you can. That means educating yourself. Two helpful resources are Create a Toxin-Free Body & Home Starting Today, by Dr. W. Lee Cowden and Connie Strasheim, and the Environmental Working Group’s website, www.ewg.org.

Sleep

Your mother was right when she said it’s a good idea to sleep eight hours each night. Nearly every Lyme doctor will tell you that proper sleep is essential to getting well.

Research shows that the most beneficial sleep hours come before midnight, so it’s best to retire by 10 p.m. or earlier. Sleep experts recommend turning off the electrical circuits to your bedroom and keeping the room as dark as possible. It’s also best to keep televisions, computers, and other electronic devices out of your bedroom. If that’s not possible, turn them off an hour before bedtime.

Emotional/Spiritual work

Dr. Dietrich Klinghardt is one of many holistic Lyme physicians who urge patients to deal with their emotional and spiritual issues. Traumatic things that happen to a person, often in childhood, can cause emotional blockages that weaken the immune system and allow disease to flourish.

Many healing modalities address these issues, such as psychotherapy, prayer and various forms of counseling. The American Holistic Nurses’ Association website, http://www.ahna.org, provides a list of modalities along with a brief description of each.

Cold and Flu Avoidance

You can’t get well if you’re always getting sick. This truism resonates with Lyme patients whose taxed immune systems can’t afford to contract a cold or the flu.

While natural and over-the-counter cold and flu remedies can help, hand washing is the key to avoiding these illnesses. Jason Tetro, a microbiologist and author of The Germ Code, says you should wash your hands when you return home and whenever you touch anyone or anything you suspect harbors cold or flu germs. He recommends using an alcohol-based hand sanitizer if soap and water aren’t available.

Fresh Air and Sunshine

Tetro also advises opening windows whenever possible. He says letting fresh air into the house cuts down microbial levels and gives your immune system a break.

Sunshine is a great way of increasing Vitamin D levels. Well-known physician Dr. Jacob Teitelbaum recommends getting lots of sunshine while at the same time avoiding sunburn.

Self-discipline

It’s not enough to know how to fight Lyme. You need the self-discipline to make yourself do what you need to do.

Making checklists helps me with this. I have one checklist that details the supplements I take and another checklist that has items like exercises, stretches, meditation, and deep breaths. Checking items off makes sure I get things done, and each check mark brings with it a small sense of accomplishment.

Laughter

Dr. Cowden developed an herbal supplement program to fight Lyme, but herbs aren’t the only part of his regimen. He also encourages patients using the program to make several positive lifestyle choices, including looking for ways to laugh every day.

Dr. Don Colbert, the author of many health books, prescribes 10 belly laughs a day for his patients. Along with this, he advocates watching classic situation comedies like The Lucy Show.

These physicians believe laughter is among the best medicines available. Fortunately, finding laughs is easy. You can, of course, watch comedy shows on television, or search for funny items at YouTube, at iTunes, or at http://www.archive.org, the Internet Archive.

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 it helps if they are extremely high-quality herbs, chosen by expert herbalists. It can also help if they are administered by qualified practitioners, though doing it yourself often works too. 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 23 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.

Cutting the cost of Lyme

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Three Lyme Mistakes to Avoid

If ever a disease could cure a perfectionist of perfectionism, it would have to be persistent Lyme.

Is it possible for anyone on a journey through Lyme country not to make mistakes along the way? The truth is that no doctor, no patient, no anybody, fully understands this disease. With this total lack of 20-20 vision, everyone with persistent Lyme eventually falls into a pit of some sort or another.

I can think of three BIG mistakes I’ve made. All of them happened before I was diagnosed with Lyme, but was without a doubt carrying the disease. Then, I was one of countless people around the world with some dreadful illness no doctor could figure out.

Mistake one was trying to go too fast. After making the doctor go rounds for a while, I found a naturopathic doctor (ND) who seemed to have an inkling of what to do. At the end of our appointments, he’d ask when I wanted to see him next. My response was always, “How soon can we do it?”

My haste was understandable. In a very short period, I’d gone from feeling well to feeling abysmal. When I started seeing this naturopath, I was still able to work half time, but my spare time and weekend hours were spent mostly in bed. The medical doctors couldn’t find anything wrong, but I knew something was seriously wrong. My health was slipping away, and I desperately wanted to stop the slide. Now.

So the naturopath tried various treatments that might have worked better if I’d given my body the time it needed to detoxify. As it was, I was pulling more garbage out of my system than my system could handle, and things got worse instead of better.

From my discussions with other Lyme sufferers, this is probably one mistake most people make. There was no way for me to know that I was going too fast. Maybe the naturopath should have insisted on a slower pace. But he didn’t have a clear idea of what was going on either.

The bottom line is that like any other person, I could not detoxify and get better any quicker than my body’s ability to detox and heal. I now wish I had been more patient.

Mistake two also had to do with a naturopath. I wasn’t getting better with the first naturopath, so I sought out another highly regarded ND in my city. He too wasn’t sure of what the problem was, but he was extremely confident in himself. So he proposed several things which he was sure would work. But deep down, I could hear my body warning me that I should be careful about his approach

So we ended up negotiating a fair bit. Now, I was going a lot slower, having learned from mistake one. I’d want to discuss his proposals at length, until I got a feeling inside that they had a good chance of working.

Naturopath No. 2 soon tired of this. It got to the point where he gave me an ultimatum. Do what I tell you or see somebody else.

So I’ll call my second mistake “Bowing to pressure from the doctor when you know in your guts he or she is wrong .” I would guess this is also on the top 10 list of errors for Lyme patients.

Again, I had a difficult decision. My health was continuing to slide, and my marriage was sliding with it. No other practitioner in town had a clue what to do.

I took his remedy, and it was a disaster. My health quickly worsened, which put further pressure on my marriage.

And this brings me to mistake three. I’ll call this one, “Not doing everything possible to maintain your primary human relationship.”

Looking back, I believe I tried very hard to do this. I did the best I could with the level of maturity I had at the time. But if I had to do it over again, I would have placed more emphasis on meeting my wife’s needs before I met my own. If I had done that, I might still be married.

My thinking at the time was that I had a very serious health problem that no one knew how to solve. Things were going downhill so fast that I feared it was life-threatening – and that may have been true. So when situations occasionally came up where my interests and my wife’s interests collided, I would sometimes feel the sick person’s view should prevail.

Lyme is known as a relationship wrecker, and I think it’s mainly because neither party usually understands the other party’s predicament. The caregiving one tends to think it can’t possibly be as bad as the Lyme patient claims, especially when there is no clear diagnosis. The sick person, on the other hand, tends not to understand just how difficult their situation makes things for their partner. Both lives are turned upside down.

I didn’t grasp at the time how important love and relationships are to the healing process. Back then, I followed our society’s more mechanistic view of human beings and how they get well. But I am not a machine. I am a human. And, like every human, I make mistakes.

Photo courtesy of joethegoatfarmer.com