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.

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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