The Best Thing About Lyme

I’m not one of those people who say they’re glad they’ve had Lyme. No matter how many life lessons it teaches me, I’ll always wish this miserable disease had never become part of my life.

Lyme has stolen an unbelievable number of things from me, mostly the most important things. If I could sue Borrelia, I’d ask for millions upon millions of dollars in damages.

But the truth is that having Lyme can make a person better. And I’d say the best thing about Lyme is that it gives you tremendous incentive to be the best you can be.

It’s like an athlete training for the Olympics. Every day you focus on doing exactly what you have to do as well as you can, sometimes just so you can survive. When I was really sick, I used to divide the day into three-hour blocks. The goal was to make as few mistakes as possible in each block and perform each task as well as I could.

Those things were often pretty mundane. Make sure I had three glasses of water in the morning. Do a brief series of stretches, because that’s all the exercise I could do. Make sure I took my supplements exactly as I was supposed to, and at the times I was supposed to. Check mark in box on this protocol sheet. Check mark in box on that protocol sheet.

I’m in much better health now in, so all this isn’t as intense as it once was. But I’m still not fully well, so the incentive to max out in all realms of life is still there.

Probably the most important area is simply trying to be a good person. Whether you believe in God or karma or the universe of whatever, anyone with chronic Lyme who aims for 100 percent wellness is going to need some wind at their back.

Christianity teaches that what you sow you reap, and much of karma is about what goes ’round comes ’round. I believe in this, and I badly want to be fully well, so my incentive to goodness is powerful. Let that driver in the traffic jam in front of me? Glad to. Practice random acts of kindness? With pleasure. I’m no more perfect than anyone else, but trying to do the right thing has become a habit.

When your heart’s desire is total wellness, it does wonders for your discipline. Before getting sick, I ate a lifetime’s worth of junk food. Now you’re going to have to wrestle me down and jam that crap down my throat to get me to eat it. If I feel tempted, I remember how wretched I felt, month after month after month, and my appetite for sweets quickly fades away.

Exercise? Now I see it as a privilege. For a long time, it was a struggle to walk the eight steps from my bed to the bathroom. Compared to that, going for a pleasant stroll is bliss. Are you kidding? Fresh air. Sunshine. Seeing people, animals, trees, clouds. Unbelievable! After being released from prison Lyme, you start to see the world as a small child would.

Even something like cleaning the house. For a long time, I wasn’t very good at that. But now I know a few things about microbes, and frankly, I don’t want a lot of them hanging around.

The potential downside of all this incentive is that it could lead to perfectionism. But after doing a ton of Lyme research, I know that perfectionism is a stumbling block to healing. So I remember to take it easy on myself, laugh a lot, make time for relaxation, and meditate every day. Still checking off those boxes.

So like an Olympic athlete, my habit is to maintain a laser focus on my tasks. For Olympians, everything they do right day in and day out is one step closer to a medal podium. For Lyme patients like myself, the steps are much smaller but they lead to an even bigger goal – getting back a better life than you had before Lyme entered your life.

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The Lyme World’s Unsung Hero

Did you realize there’s a guy who’s spent decades figuring out precisely how Lyme Disease and its coinfections work, and precisely how to treat them?

More than that, did you realize the same guy has had considerable success in getting people well from these miserable diseases?

My guess is that most people with Lyme don’t know this, and that is regrettable. I, for one, owe this man some major gratitude.

I’m referring to Stephen Harrod Buhner, the author of many books including Healing Lyme (two editions), Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma; and Natural Treatments for Lyme Coinfections:  Anaplasma, Babesia, and Ehrlichia.

I call him the unsung hero because there are several other Lyme heroes that also have made tremendous contributions to understanding and treating the disease – people like Dr. Richard Horowitz, Dr. Dietrich Klinghardt, and Dr. Joseph Burrascano. But they all have a relatively high profile, and, if you have Lyme, chances are you’ve heard of them.

Buhner stays mostly under the radar. He doesn’t run a world-renowned clinic or give lectures all over the globe. He’s a master herbalist living in an American culture in which the medical system places far less value on herbalism than it should.

You can gauge his lack of fame by the way people butcher his name. I’ve seen him referred to as Stephen Bruhner on many occasions, and on others as Stephen Harold Buhner. Then again, herbalism is known for taking a humble approach.

Despite the praise I’ve been laying on here, I want to be clear that I’m not recommending that you dive right into the protocols that Buhner has developed for Lyme and coinfections. I think they are brilliant, but herbal medicine can be very complicated. If you choose to go on them, I suggest doing so under the guidance of an expert herbalist or holistic medical practitioner extremely familiar with herbal medicine.

If you don’t have a good sense of what you’re doing with herbs, it’s been my experience that they can make things worse. There are many possible pitfalls, such as taking an herb that for one reason or another doesn’t mesh with you, taking the wrong dose, or taking a combination of herbs that doesn’t work for you.

I tried the Buhner protocol for Lyme a few years back and it didn’t produce results. That wasn’t the protocol’s fault; it was my fault for not having enough experience working with herbs. But now that I’ve taken more herbs and read many books on the subject, including the above-mentioned works and several others Buhner has written, I have a much better feel for the process. Thus, fortunately, the herbs Buhner recommends are working well for me and are making me feel better and better.

In his writings, Buhner stresses the need for people to tweak his protocol to meet their individual needs and circumstances because nobody has precisely the same case of Lyme Disease as anyone else does. Treating Lyme this way is scientific, but there’s also a lot of art to it.

Some people are wary of his methods because Buhner is not a medical doctor. But 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 all told he has had contact with more than 25,000 people with Lyme and has reviewed 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 – generally small doses of knotweed and cat’s claw to keep symptoms from returning, 5 percent had some relief and 5 percent got no help.”

Backing for his claims comes from other sources as well. In his book, “Suffered Long Enough“, Dr. William Rawls says “thousands of patients have followed his protocols with exceptional results.” Dr. Klinghardt has noted that Buhner’s contributions to herbal treatment for Lyme have made him “the outstanding man in his field.”

I’ve always believed in giving recognition to people who deserve it but don’t seek it, and who don’t get as much of it as they should. This is what makes an unsung hero, and, for his exceptional work with Lyme Disease the past few decades, Stephen Buhner certainly deserves the title.

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

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

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.