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.

LDI: Does The Weather Affect Your Dose?

As if Low Dose Immunotherapy isn’t complicated enough, I’m going to toss in another variable.

I’ve been doing LDI for nearly 15 months, and there’s one factor that affects how a given dose will work for me that I’ve never heard anyone mention.

I doubt this applies to everybody, but I also doubt that it only applies to me.

The factor I’m referring to is the weather. More specifically, the season I take the dose. And, to be more precise, how humid it is when I’m taking the dose in that season.

I’ve had chronic Lyme for a long time now, and it’s become clear that high levels of humidity push my immune system to react more strongly than usual.

This can be a good thing and a bad thing. It reduces my chances of getting a cold, but it also sometimes pushes my immune system out of balance. Combined with the Lyme bacteria doing its best to screw up my immune system, it can cause problems with overreactions. In this scenario, I’m more reactive to a lot of things.

So, how does this relate to LDI? Well, during an extremely humid period, I am more likely to react to a weaker dose and have a flare of symptoms.

The difference in my reactivity to LDI in a humid period as compared to a dry period seems to equal about a 1C difference in the dose.

In other words, let’s say I’m asked to take an 18C dose in  late November when the relative humidity in my part of the world is high. I’m likely to react to it and have a flare of symptoms. In early June when humidity is low I probably wouldn’t react to it at all or I might react to it to a lesser degree. So an 18C dose in November is roughly the same to me as a 17C dose in June, although the 18C dose is actually weaker.

Some people may not think of November as a humid month, but in Central Canada where I live, it is. As in many parts of North America, people don’t feel the humidity much this time of year here because it’s cold outside. But since the sun shines only about nine hours a day and has very little heat in it, there’s not much to drive down the relative humidity.

Because weather affects me, I follow Internet weather sites closely. In late November, humidity is often at 100 percent overnight and usually between 70 and 80 percent during the day.

Compare that to June, when the sun is hot and sticks around for about 16 hours a day. Then, humidity averages around 70 percent overnight and 40 percent during the day.

Making all this even trickier is the fact you can have humid spells during dry periods and dry periods during humid spells.With this in mind, in my case, it’s a good idea to talk to my doctor near the time of my dose and tell her how the humidity during that period is likely to have a slight affect on what dose will work best for me.

So I hope I’m not making LDI even harder to get a handle on. All I’m saying is that there is a subset of patients (at least one, anyway), and probably more, that will be more likely to react to a given dose if the weather is very humid.

I suspect this might apply mostly to patients who are extremely sensitive by nature or who have had Lyme for a long time, and, as a result, have had their nervous systems made highly sensitive. I believe I contracted Lyme in childhood but didn’t see it manifest until I was under a lot of stress in my early 30s.

LDI is still in its early stages of development and I don’t think anyone has fully figured it out yet. As the guinea pigs, we LDI patients are the ones who have to tell practitioners how we are affected by it. With this in mind, I hope that taking humidity into consideration in some cases might be added to the myriad of factors that go into the greater understanding of LDI dosing.

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

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.

LDI: Part 2. On hold

For me, LDI started out well, and I believe it’s going to end well.

But lately, it hasn’t been going very well,  so for the reasons I’m about to share I’m taking a break from Low Dose Immunotherapy.

I’m not sure why, but at about four months into treatment, the positive trend I had been enjoying started to shift. I hoped this would quickly pass, but it didn’t. I’d feel a bit better, then a bit worse, or maybe a lot worse.

Some days were okay, others dreadful.  “This reminds me of something,” I thought to myself. “The year when I first got sick with Lyme.”

Before going further, I should briefly explain LDI to those not familiar with it. It’s a treatment for Lyme disease and co-infections developed two years ago by an Alaskan doctor, Ty Vincent, that seeks to improve patients’ immune system tolerance and effectiveness. Many have seen fantastic results, and the use of LDI is rapidly spreading among Lyme physicians.

But while response has been mainly positive, some patients have had mixed results or even seen their situations get worse.

After investing a significant amount of time and money in LDI, it was hard to admit to myself that I was starting to go backward health-wise and that I had to do something about it.

Fortunately, I chose the right something – antibiotic herbs. I started with a microdose and gradually upped it from there. I’m happy to say that I’m now feeling a whole lot better.

I realize that Dr. Vincent says patients had best not take microbial killing protocols while doing LDI because that makes it more difficult finding the correct dose, but sometimes you’ve got to do what you’ve got to do.

I didn’t think it would happen this way, because, as I said, my LDI adventure had a good start.

My first dose was a fairly standard 15C (doses are diluted homeopathically and contain a minute amount of dead microbes). I had moderate flaring the first week or so, but the symptoms weren’t problematic. Following this came about a month of feeling pretty well, a bit better than I had been feeling in the months before starting LDI. Then came a couple of weeks where things slid a bit, although that was barely noticeable.

This is called a mixed reaction. I felt a bit worse when flaring, then a bit better afterward.

Because I had flared,  the LDI rules said I had to wait at least seven weeks for the next shot. My doctor weakened the dose to 17C, and again there was some flaring, this time milder, and again lasting about a week.  And again, I then experienced a month or so of feeling pretty well, followed by a couple of so-so weeks.

I hadn’t hit the magic target dose, but overall I was making progress. Until just before I was scheduled to take the next injection. I woke in the middle of the night feeling a bit nauseated, and my doctor decided later that morning to delay the shot until that cleared.

Good call. That bit of nausea turned into a two and a half week flare that I had an awful time shaking off. When I did, I received an 18C injection.

Again, a week or so of flaring followed. But then there was only one week of feeling a bit better. Following that, I felt like the flare had come back. That added up to nearly a month of nausea, body aches, and a general malaise to a degree I’d hoped I’d never experience again.

What went wrong? I’m almost positive it wasn’t some flu, because no one I was in contact with had anything like that. And I’ve had enough Lyme flares in my life to be almost certain that this was the culprit.

My main theory is that I was biting off more than I could chew. The LDI doses are homeopathic nosodes of Lyme and co-infections, and the purpose of a nosode is to stimulate the body to fight the microbes. I also found it interesting that an energy medicine practitioner I know said he was seeing strong evidence that LDI patients he worked with were significantly reducing their loads of the Lyme bacteria.

So I think I was killing more Lyme than my body could comfortably handle. It may have been a cumulative thing where I reached a tipping point where I could no longer manage the die-off nearly as well.

I believe winter was also a problem. I live in Canada, and even mild winters like this one mean that my immune system gets a lot less help from sunshine and fresh air and a lot more challenge from spending extra time indoors and from having to deal with the various colds and other bugs that circulate this season.

For the time being,  I’ll continue taking antibiotic herbs. But the reason I decided to try LDI  was because it has the potential to bring me from a point of being shy of fully well to being fully well. So I plan to resume LDI sometime in the spring when conditions seem more favorable.

For some people, LDI works right away, like magic. But it’s my sense that the majority of patients find it a winding road. That’s certainly what my path has been like, and I’m hoping that the bumpiest part of the journey is now behind me.

LDI: The great Lyme hope

I am a guinea pig.

By this, I mean I’m early on the boat when it comes to Low Dose Immunotherapy or LDI, which is considered by many to be the most promising new Lyme treatment to come along in years.

In a nutshell, these are the LDI facts. It was pioneered nearly two years ago by an environmental medicine practitioner named Dr. Ty Vincent, who hails from Alaska. He had been having difficulty getting his Lyme patients well, so he tried a new approach that spun off a treatment called Low Dose Allergen Therapy (or LDA).

With LDI, patients are given by injection or under the tongue an incredibly small dose of dead particles of many strains of the Lyme bacteria, Borrelia, as well as many strains of co-infections like Bartonella, Babesia, and Ehrlichia. Along with this, the patient is given an enzyme called beta-glucuronidase, a substance that helps build T regulatory cells, an important part of the immune response.

The idea is to develop more immune tolerance to the microbes.  Vincent’s theory is that most people with persistent Lyme are sick mainly because their immune systems are overreacting to the bugs and causing a negative cascade of chemical reactions in their bodies.

Somehow,  in a way that I don’t fully understand, the combination of the low dose dead microbes and the enzyme can cause the immune system to deal more efficiently with the microbes. The trick is getting the dose just right. When that happens, patients feel much, much better, and don’t experience any flaring.

It’s Vincent’s view that millions of people carry these bugs without getting sick, and that a lot of people ill with Lyme and co-infections could carry them too if their immune systems were properly regulated.

There’s more to it than that, but that covers the basics.

The question is: Does it work?

Early results looked fantastic, as, after several months, Vincent was saying 90 per cent of patients on LDI were improving, and many were totally better. That percentage has dropped substantially as the technique has spread and more doctors have incorporated it into their practices, but no one knows what the batting average is now.

I am not the guinea pig type, and rarely try a treatment until it has an established track record. But I tried LDI because for a long time I’ve felt that immune overreaction has been a major problem for me, and because many well-respected Lyme doctors speak highly of it and use it on their patients.

And, because it offers hope. I’ve gotten a lot better, but I’m stuck at a point shy of being fully well. LDI could change that.

So how am I doing? It’s nearly six months since I started, and I’d say I’ve been helped a bit in some ways and made worse a bit in others.

My first dose was a 15C potency. That’s a pretty normal starting point. The range is usually between about 5C and 23C depending on how sensitive your practitioner thinks you are. The potencies are homeopathically diluted, and according to Vincent, a 5C potency is equal to one part in 10 billion of the actual substance. Now that’s low dose.

I hoped my immune system would react to the treatment by shutting off inflammation and responding to the Lyme and co-infections in a more effective way. Then I’d feel great. This happens to some people. Not to me.

My reaction was mixed. You’re told to give it 10 days from the day of treatment before making any judgments, and after that period had finished, I had gone through some moderate flaring of symptoms, but overall I felt a bit better. But the mild improvement could have resulted from other factors.

One of Vincent’s rules is if you flare at all, you should go to a weaker dose after a seven or eight week period is up. The waiting period is because the dose, he says, is educating the T regulatory cells, and that process takes about 55 days.

So I tried 17C next. This time, there was mild flaring, and I felt much the same after 10 days. After another break of about two months, it was 18 C with very mild flaring, and at the end again I felt much the same.

The main question I have is this. When is a flare a good thing and when is it a bad thing? Vincent’s goal is to get patients not to overreact to the microbes and not have a flare, but he says getting a flare means your body is reacting, and that should mean that eventually you’ll find the right dose. He feels the worst thing is no reaction at all, which probably means the treatment won’t work for you.

But I wonder if perhaps a flare can in itself be positive. The diluted dead microbes are essentially homeopathic nosodes, and my neighborhood homeopath tells me the purpose of nosodes is to stimulate your body to fight the germs you are carrying.

In this case, a flare could mean that I may feel lousy, but my body is whittling down the microbial load I’m carrying. And that’s a good thing, as long as I’m strong enough to handle the flare. Having a severe flare when you are in a highly weakened condition is usually a very bad thing in my experience, as it can lead to serious setbacks.

My other question is that while getting the dose right means you’ll start reacting to the microbes more effectively, does missing the right dose lead to your body to deal with the microbes less effectively?  I sometimes get the sense that since starting LDI my body has become more likely to overreact to the germs.

There’s also the opportunity cost of LDI. Vincent recommends patients stay off killing protocols until they’ve found the correct, or target dose, which will be given regularly once it’s been established as a way of keeping patients well. But I’m six months in and really at much the same point as where I started. Would I have been better off now if I’d gone with other treatment options?

As guinea pigs go, I’m a stubborn one, so I’ll give it at least one more try. There are many cases where people go many months searching for the target dose, and once they find it, it’s like sticking a key in the ignition switch. Vrroom, vroom, and life is all of a sudden a whole lot better. Knowing that makes it very difficult to give up on the great Lyme hope.

Anatomy of a Lyme flare

Ooooo. My stomach. Ooooo.

I’m lying in bed feeling as if someone has poisoned me. “Okay,” I say to myself. “What was it this time?”

Nearly everyone with Lyme knows all about flaring. Some call it a die-off reaction, while optimists call it a healing crisis. Others call it herxing, a short form of the official name of this not so little piece of hell, the Jarisch-Herxheimer reaction. Jarisch and Herxheimer were two dermatologists back in the day who get credit for discovering it. Thanks, guys.

I’ve had my share of flares, and more often than not, they give you a fair bit of time to flake out in bed and wonder what on earth caused it to happen again.

Through the latter months of 2015, things had been going well on my Lyme healing journey. A few not so hot days here and there, but no real flares. Then came the night of Jan. 7.

I woke up around 1 a.m. feeling a bit nauseated. No big deal, I thought. I’ve woken up feeling queasy many times. It nearly always goes away quickly. But then I woke up again at 2 a.m., and this time it was really bad nausea.

It kept getting worse, and I scanned the room to see where the barf bucket was in case I couldn’t reach the bathroom in time. The nausea continued all night.

Fortunately, I didn’t have to empty my stomach’s contents, but when I got up, there was a stabbing pain in my neck to add to lingering gut distress.

My flares usually last only a day, so I was hoping that all would be well later that afternoon. But it wasn’t. Was this a several day herx, or even one of the dreaded ones that last a week or several weeks?

The next few days I spent a lot of time in bed, and added shoulder soreness and gas pain to my symptom list.  On day three I tried going for my usual walk, but got about halfway and turned back. Mark this one down for a week or more. Grrr.

It felt like the flu, and this time of year a lot of that is going around. But I didn’t have any fever, and none of my roommates, friends or others I’d been in contact were sick, so Lyme herx was the likely offender.

So for a week I lie low, only doing what I have to do, and resting a lot. I don’t feel that bad any more, as long as I don’t do much of anything.

On day eight, I feel a lot better and figure it’s time to start upping my activity level – get back to my regular exercise, catch up on some errands, that sort of thing.

Mistake! For me, the cardinal rule for flare recovery is being totally honest with myself and making sure I’m really ready to get back into the normal routine. It’s like spraining an ankle. If you try to run on it before it’s ready,  you sprain it again, and you’re back to square one, or worse.

So I overexerted myself and the next day I felt lousy again. Not much in the way of symptoms beyond a bit of nausea, but I had that Lyme malaise that’s so hard to explain to doctors. Mega-blah.

This pattern continues for another week or so, before finally I feel human again and can get back into my old routine.

That adds up to a two and a half week herx, so I had a lot of time to figure out what went wrong. If I could determine the problem, then maybe I could avoid it happening again.

Not an easy piece of detective work. The body is so complex, and Lyme so complicated that I run about 50 theories through my head, then give up and pray and seek divine guidance. I’m not sure if I got any of that, but here’s what I think happened on Jan. 7.

In retrospect, I can see that it didn’t just happen all of a sudden. A few things took place leading up to the event that may have been tip-offs.

One was the weather. I tend to have most of my severe herxes in November, December and January. I think this is because it’s the most humid time of the year where I live. It doesn’t feel humid because it’s cold outside, but since there is so little daylight and no hot sun, the humidity is almost always high.

I’m not sure why this causes me problems. Maybe it’s because the high humidity allows bacteria to flourish, and I wonder if it may have something to do with humidity spikes stimulating my immune system and causing it to overreact. Whatever the case, I’ll often wake up after rain or snow in the overnight hours and feel under the weather.

And since we’re blaming climate change for everything else these days, why not give it some blame for my flare? This time of year brings even more changeable weather than usual, and the barometer swings seem to have a negative effect on me.

Some other factors may have come into play. Overexertion is one of the most leading causes of flares, and I may have been guilty of that. But while being very careful about what and how much you do is so important in trying to overcome Lyme, few people realize it’s just as important to watch diligently what medications and supplements you put into your body.

In most cases of persistent Lyme, the bugs are hiding out in various parts of the body. You want to chase them out of their holes and kill them, but you want to do it when it’s advantageous for you. If you’re feeling horrible, it’s usually not the time to stir the pot.

It’s kind of like fishing. As long as you take the same meds and supplements at the same time every day, the bugs know what’s coming. But when you alter the routine, you can trick them, and out they come into the daylight where you can kill them.

Looking back at my journal, I see I had a B12 shot on Jan. 4. And while I used to have these injections regularly, now I have them every now and again with no fixed schedule.

For the most part, I feel these shots are beneficial, but they are a leading cause of my flares. I’m not sure if they’re stirring up Lyme or other microbes, but there’s no doubt that on infrequent occasions they cause reactions that slow me down for a week or more.

Low-dose immunotherapy may have also led to the herx. I’ve been trying this new therapy, which aims at getting the immune system to deal more efficiently with Lyme, since September.

It seemed to be helping at first, but lately I’m not sure what it’s doing. I see in my Facebook LDI for Lyme group that while the treatment has helped many people, many others have had severe flares.

The other suspect is grape seed extract, a seemingly harmless substance. Made of, you guessed it, grape seeds, I find this supplement reduces inflammation. When I take it, I always do so before bed, but on the afternoon of Jan. 6  my left knee was aching a bit. Since I try to avoid taking NSAIDs whenever possible,  I reached for the grape seed. It may have stirred something up I wish had stayed dormant.

That’s the best sleuthing I can do. Maybe I’ve guessed the problem and maybe I haven’t. Now I’ll make renewed efforts not to overexert myself and to be more careful about what I put into my body.

But like I said before, Lyme is a complicated beast and sometimes you can do all the right things and still have a flare. Not a very happy thought, especially when you’re lying in bed clutching your gut and squinting to see the licence plate of the truck that just ran over you.

 

Photo by Monica Holli. Accessed through http://www.Creativecommons.org