Rife: Notes from a newbie

“Be very careful or you could make things worse.”

With that advice in mind, I began my Rifing for Lyme journey. It’s now a few months and 27 treatments later and nothing terrible has happened, so that’s good. And I feel I’ve learned enough to make it worth sharing my experiences.

For those not familiar with Rife, the idea is that every living thing has a frequency. In the case of Lyme and its coinfections, the Rife machine sends a frequency aimed at a specific microbe, and this frequency resonates with the microbe, causing it to vibrate, and in the process either get damaged or destroyed.

It is called Rife because a pioneer of this technique was named Royal Raymond Rife. This guy, a scientist and inventor in the early 1900s, was a definite genius.

Today, there are many types of Rife machines named in his honor. I use the Doug Coil machine, which was created by Doug MacLean. Back in the 1980s, MacLean, a mechanical engineer, constructed this machine and successfully treated his own Lyme case, which had not responded to antibiotics.

I started my Rife odyssey cautiously, by doing lots of research – Rife websites, a couple of Rife books, and then reading thousands upon thousands of posts in various online forums. From those sources, I chose what I felt sounded like the four most promising frequencies – 432, 612, 840 and 2016.

My first rule was to Rife as often as possible, but only to start the next session after I thought I’d finished detoxing from the last one. So I did 13 sessions in the first 23 days, but then I found I was getting tired more quickly than usual after exercise. I guessed that the treatments were taxing my adrenals, so I took a few weeks off to adjust my adrenal support so this tiredness was no longer an issue.

The problem, it seemed, was that while I thought my body had recovered from a session, I really hadn’t given it quite enough time to recover. While I first thought the sweet spot for me was four sessions a week, it’s really two or three times weekly depending on how things go with each treatment.

So lesson one for me was wait until I’m sure I’m sure I’m ready for the next session. Lesson two was that each Rife treatment is an experiment, and you never really know how it’s going to turn out.

In any case, I felt that Phase 1 was a moderate success. Overall, I felt a bit stronger, and I could see this at the gym, where I noticed a substantial gain in how much I could lift on the leg machines. And the herxes were only mild, but there were enough symptoms, like gas, stomach gurgling, neck and joint pain, to let me know the Rife machine was working every time I turned it on.

I’d say I’m now in Phase 2, with another 14 treatments behind me to go along with the initial 13. What I’ve done lately is to better sort out which frequencies are most useful for me. My goal was to first treat just the Lyme Borrelia organism before moving on to the coinfections, but a belated look at a cross-referenced Consolidated Annotated Frequency List (CAFL) gave me a hint as to perhaps why treatments in the first phase were more taxing than I had expected.

The problem with 432 for me is that it also hits Babesia and is also an immune booster. This is a good thing for some people, but my system is easily overly boosted, and while I found the 432 had beneficial effects it also seemed to cause autoimmune-like symptoms such as knee pain.

The 612 frequency not only hits Borrelia, but it also hits the Coxsackie and Echo viruses, both of which I believe I have. The 840 also resonates with Bartonella and Klebsiella pneumonaie, which are two more suspects in my pile of microbes. So since I wanted to focus at first on Borrelia, I’m now working solely on 2016.

Here’s a thumbnail sketch of how each frequency has gone for me, noting what symptoms they’ve provoked. I’d say all the frequencies have been positive, ranging from mildly positive to moderately positive, with the total effect being a moderate net gain in strength. You’ll note the run times are fairly short, but it’s my understanding that the Doug Coil is one of the most powerful machines available, and generally a beginner needs to stick with short sessions.

432 – 8 sessions totaling 37 minutes:  improved stool, feel bit tired, bloating, heat in back and chest, stomach gurgling, gas, strange feeling in brain, right knee and thigh soreness, red stripe rashes on back, nausea, nasal congestion, muscle soreness, shoulder pain, urinary irritation.

612 – 4 sessions totaling 14 minutes: vibrating feeling during session, urinary irritation, shoulder soreness, nausea, morning fatigue, sleep longer than usual, unusual feeling in head, spacey feeling, sore neck and back.

840 – 5 sessions totaling 6 minutes, 15 seconds: stomach gurgling, nausea, shoulder soreness, cool feeling in back, sleep longer than usual, dark urine, bloating, warm feeling in back.

2016 – 10 sessions totaling 11 minutes, 30 seconds: strange feeling in head, gas pain, bloating, heat in chest and back, tiredness in evening, sleep longer than usual, gas, spacey feeling, foot pain, mild dizziness.

All that doesn’t sound like a ton of fun, but like most people with Lyme, I’ll gladly trade a pack of mild detox symptoms for overall improvement. So after 27 treatments, I’m glad I took that initial warning seriously. I can’t say I’m a whole lot better than when I started Rifing, but I feel that solid progress has been made.

And at least I can say I haven’t made things worse.

Rife: Notes from a newbie

“Be very careful or you could make things worse.”

With that advice in mind, I began my Rifing for Lyme journey. It’s now a few months and 27 treatments later and nothing terrible has happened, so that’s good. And I feel I’ve learned enough to make it worth sharing my experiences.

For those not familiar with Rife, the idea is that every living thing has a frequency. In the case of Lyme and its coinfections, the Rife machine sends a frequency aimed at a specific microbe, and this frequency resonates with the microbe, causing it to vibrate, and in the process either get damaged or destroyed.

It is called Rife because a pioneer of this technique was named Royal Raymond Rife. This guy, a scientist and inventor in the early 1900s, was a definite genius.

Today, there are many types of Rife machines named in his honor. I use the Doug Coil machine, which was created by Doug MacLean. Back in the 1980s, MacLean, a mechanical engineer, constructed this machine and successfully treated his own Lyme case, which had not responded to antibiotics.

I started my Rife odyssey cautiously, by doing lots of research – Rife websites, a couple of Rife books, and then reading thousands upon thousands of posts in various online forums. From those sources, I chose what I felt sounded like the four most promising frequencies – 432, 612, 840 and 2016.

My first rule was to Rife as often as possible, but only to start the next session after I thought I’d finished detoxing from the last one. So I did 13 sessions in the first 23 days, but then I found I was getting tired more quickly than usual after exercise. I guessed that the treatments were taxing my adrenals, so I took a few weeks off to adjust my adrenal support so this tiredness was no longer an issue.

The problem, it seemed, was that while I thought my body had recovered from a session, I really hadn’t given it quite enough time to recover. While I first thought the sweet spot for me was four sessions a week, it’s really two or three times weekly depending on how things go with each treatment.

So lesson one for me was wait until I’m sure I’m sure I’m ready for the next session. Lesson two was that each Rife treatment is an experiment, and you never really know how it’s going to turn out.

In any case, I felt that Phase 1 was a moderate success. Overall, I felt a bit stronger, and I could see this at the gym, where I noticed a substantial gain in how much I could lift on the leg machines. And the herxes were only mild, but there were enough symptoms, like gas, stomach gurgling, neck and joint pain, to let me know the Rife machine was working every time I turned it on.

I’d say I’m now in Phase 2, with another 14 treatments behind me to go along with the initial 13. What I’ve done lately is to better sort out which frequencies are most useful for me. My goal was to first treat just the Lyme Borrelia organism before moving on to the coinfections, but a belated look at a cross-referenced Consolidated Annotated Frequency List (CAFL) gave me a hint as to perhaps why treatments in the first phase were more taxing than I had expected.

The problem with 432 for me is that it also hits Babesia and is also an immune booster. This is a good thing for some people, but my system is easily overly boosted, and while I found the 432 had beneficial effects it also seemed to cause autoimmune-like symptoms such as knee pain.

The 612 frequency not only hits Borrelia, but it also hits the Coxsackie and Echo viruses, both of which I believe I have. The 840 also resonates with Bartonella and Klebsiella pneumonaie, which are two more suspects in my pile of microbes. So since I wanted to focus at first on Borrelia, I’m now working solely on 2016.

Here’s a thumbnail sketch of how each frequency has gone for me, noting what symptoms they’ve provoked. I’d say all the frequencies have been positive, ranging from mildly positive to moderately positive, with the total effect being a moderate net gain in strength. You’ll note the run times are fairly short, but it’s my understanding that the Doug Coil is one of the most powerful machines available, and generally a beginner needs to stick with short sessions.

432 – 8 sessions totaling 37 minutes:  improved stool, feel bit tired, bloating, heat in back and chest, stomach gurgling, gas, strange feeling in brain, right knee and thigh soreness, red stripe rashes on back, nausea, nasal congestion, muscle soreness, shoulder pain, urinary irritation.

612 – 4 sessions totaling 14 minutes: vibrating feeling during session, urinary irritation, shoulder soreness, nausea, morning fatigue, sleep longer than usual, unusual feeling in head, spacey feeling, sore neck and back.

840 – 5 sessions totaling 6 minutes, 15 seconds: stomach gurgling, nausea, shoulder soreness, cool feeling in back, sleep longer than usual, dark urine, bloating, warm feeling in back.

2016 – 10 sessions totaling 11 minutes, 30 seconds: strange feeling in head, gas pain, bloating, heat in chest and back, tiredness in evening, sleep longer than usual, gas, spacey feeling, foot pain, mild dizziness.

All that doesn’t sound like a ton of fun, but like most people with Lyme, I’ll gladly trade a pack of mild detox symptoms for overall improvement. So after 27 treatments, I’m glad I took that initial warning seriously. I can’t say I’m a whole lot better than when I started Rifing, but I feel that solid progress has been made.

And at least I can say I haven’t made things worse.

Is Chronic Lyme Curable?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

LDI: Success! A Case Study

I hadn’t had night sweats like this for years. The kind where you wake up several times with a T-shirt so soaked you have to change it.

I’m still not sure what happened, probably me getting overly aggressive using antimicrobials to treat Lyme disease. But suddenly one morning I felt like I had the flu – feverish, racing pulse, no energy, sore throat, muscle soreness and that profuse sweating.

Symptoms continued for just over a week, until, fortunately, it came time for my LDI (Low Dose Immunotherapy) treatment. The night I took the LDI dose, my  sweating reduced dramatically, and over the next couple of days the other symptoms disappeared.

So what the heck happened?

Well, it looks as if LDI worked just the way it is supposed to work.

For those of you not familiar with it, LDI has been around for several years now for the treatment of Lyme and other conditions. Patients are given extremely low dose antigens (we’re talking one part per one hundred millionth and less) of deadened pathogens or other substances and this process is supposed to prod the immune system to produce a more measured response and thus reduce or eliminate symptoms.

I’ve been doing LDI for three years and I can tell you it doesn’t always happen that way. The trick is getting the dose just right. Too strong can mean increased symptoms, sometimes causing serious problems, while too weak often produces no benefits.

This was my 22nd LDI treatment, and for the most part it has helped keep my immune system in balance and has been a key player in helping me slowly get a lot better. But while it has been a good treatment for me, it hasn’t produced the miraculous results some people have enjoyed.

This time my doctor seems to have nailed it with her dosing choice. Those who do LDI might be curious to know what that was (18C for the Lyme mix and 10C for the yeast mix. The C is a standard measure of homeopathic dosing.) From what I understand, that is a fairly weak dose for Lyme and a fairly normal dose for yeast.

So, once again, what the heck happened?

I think it started with my attempt to follow Dr. Dietrich Klinghardt’s retroviral protocol. I have followed Dr. Klinghardt’s work closely and consider him a brilliant Lyme doctor, so I paid attention when he recently said treating retroviruses was a key to overcoming Lyme.

I slowly started taking supplements from the protocol, such as broccoli sprouts, selenium, nettles, bitter melon and cistus tea.

I’m pretty sure it was the cistus tea that caused the reaction. It is known as a strong antimicrobial and it was the last retroviral supplement I took before the flare-up hit.

I didn’t expect anything to happen because I’d taken it many times before, but anyone with Lyme and co-infections is aware that you never know what is going to cause a die-off (aka Jarish-Herxheimer or herx) reaction.

Fighting Lyme is a war and those of us waging it have lots of land mines inside of us in the form of hidden microbes. Take the right (or wrong) antimicrobial at the right (or wrong) time and it can interact with that land mine and Boom! you’re lying on the couch wondering what hit you.

For me, a herx usually lasts a day or so and I haven’t had a severe one in a long while. Not so this time. One day turned into nine and the sweat just kept on coming.

That’s another problem with chronic Lyme. Sometimes when your immune system gets ramped up, it doesn’t calm down once the microbe that started the fuss has been dealt with. This can be dangerous, as an out of control immune system can produce out of control inflammation and other symptoms and has the potential to turn a one-day herx into a relapse.

This is where I feel LDI is most valuable. It can calm an out of control immune system, shut down symptoms and stop a negative spiral.

I think that’s what happened this time. Just how it managed the trick I’m not sure.

It was almost as if my immune system changed the channel. When it saw the LDI antigens, it was like it let go of its death grip on whatever it had latched on to and shifted to working on the Lyme and yeast mixes.

Whatever the case, I went from feeling less well than usual to feeling well in about a day’s time. That didn’t cure me, but it was a considerable relief. Any time you start going in the wrong direction in your fight with chronic Lyme it provokes a lot of stress and worry.

When it first came out, many people hoped LDI would be a breakthrough treatment for a wide swath of chronic Lyme patients. But while it hasn’t produced remissions for as many people as hoped, it is now generally seen as a helpful adjunct treatment for most patients who use it. In fact, I’ve heard it recently described that way by both my own doctor, and by noted Lyme doctor Neil Nathan.

“Helpful adjunct treatment” would accurately sum up my LDI experience,  but that’s nothing to dismiss. Anything that works against Lyme is highly valuable. And after my latest LDI experience I would add the word “very” to helpful adjunct treatment.

LDI: Glad I didn’t quit

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

LDI: Using Data To Help Figure This Out

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

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

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

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

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

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

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

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

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

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

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

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

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

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

See what I mean by complicated.

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

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

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

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

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

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

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

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.

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 telling you to 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, you might consider seeking the guidance of an expert herbalist or holistic medical practitioner extremely familiar with herbal medicine. That said, many people have successfully done the protocols on their own, as Buhner has laid them out with great clarity.

I tried the Buhner protocol for Lyme several ago 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