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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Beating Lyme with the anti-inflammatory lifestyle

People with Lyme disease hear the words all the time. Eat anti-inflammatory foods, take anti-inflammatory supplements, and if you need to, take anti-inflammatory medications.

This makes sense, as the smart doctors tell us that inflammation is a key problem in Lyme.

But what about taking this one step further and living an anti-inflammatory lifestyle?

Now, what is an anti-inflammatory lifestyle? The idea occurred to me a while back as I was rushing around just trying to get things done that needed doing.  Basically, it means chilling out.

Having Lyme cuts into the number of productive hours I have in the course of a day. Let’s face it. Like many people with Lyme, I’m a type A personality, and I like packing as much activity into a day as I can.

But let’s face something else. Being type A might be one of the reasons I got very sick with Lyme. When it first hit, I’d probably have been better off if I’d been a couch potato. Just lying around and resting was what my body badly needed at that point, and I wasn’t wired to do that any more than necessary. The doctors said nothing was wrong with me, so I couldn’t justify quitting work and laying low as I should have.

My fight with Lyme has chilled me out quite a bit, and now I watch out for overdoing things. In fact, I don’t have a lot of bad days any more, but they usually come after I’ve done a bit too much activity. The problem is most likely to happen if try to pack too many things into a short space of time.

So I’m making a major change. It goes something like this. Remember the Seinfeld episode where George decides the way to success is to do everything contrary to the way he usually does it. That’s the basic idea of a Type A switching to the anti-inflammatory lifestyle.

Oddly enough, my nose is an indicator of how well I’m doing. When I start to rush around too much, my nose starts to get a bit inflamed and red. At least in my case, there is clearly a direct correlation between rushing and doing too much and inflammation. The more I rush, the bigger and redder my nose gets.

This gives me both a guide and incentive, as my natural nose is a nice size and color and my inflamed nose isn’t.

Here are some of the changes I’ve made.

  • I used to like combining trips, thinking how much time I could save. Now, when possible, it’s point A to point B and back again, followed by a five-minute rest.
  • I used to drive a bit fast, but now I follow the speed limit.
  • I used to think there was no way I could meditate. Bo-ring! But now I meditate 20 minutes a day, and throw in 10 deep breaths three times a day on top of that.
  • I used to eat fast. Now I try very hard to eat slowly whenever possible.
  • I used to hate napping. Now I schedule a few 10-minute mini-naps daily, and whenever I feel my system is going too fast, I’ll toss in another one.
  • I used to rush around trying to do things as quickly as possible. Now I’m trying to take my time and enjoy doing basic things that I couldn’t do when I was very sick with Lyme.

The idea is to keep my body in the parasympathetic, or relaxed mode, so the immune system can better do its job. Too often our busy lives throw us into sympathetic, or fight and flight mode, which impairs the immune system and gives Lyme an edge. Sometimes rushing can’t be avoided, but as soon as the rush is over, I’ll lie down and rest for a bit.

So far, I’ve found the anti-inflammatory lifestyle works well. It keeps the inflammation down, gives Lyme a hard time, and it even keeps my nose from looking like I should be driving Santa’s sleigh on Christmas Eve.

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

 

The double-edged sword of exercise

Exercise. Sometimes it’s been my best friend and sometimes it’s been my worst enemy.

I’ve always been an athletic person, so it’s difficult to admit that exercise was probably one cause of my getting sick with Lyme.

Here’s what I mean. It appears I was carrying Lyme and various coinfections for years until the perfect storm hit and several stressors gave the microbes the upper hand.

Things like picking up a bad flu bug, working in a sick building, living in a moldy house, and doing too much exercise.

There were few activities I enjoyed more than cross-country skiing. I’d go for miles and miles, and I’d always feel exhilarated when finished. Until suddenly I started feeling exhausted.

I had no clue the last thing I needed was to further wear out my adrenal glands, which Lyme was stealthily battering. The doctor said I was fine, but I soon knew I had to stop knocking myself out on the ski trails.

As my health began spiraling downward, I gave up exercise altogether. The Lyme took off, and I quickly found myself bedridden.

My first mistake was too much exercise. My second was too little. While the idea of expending energy for anything besides essentials seemed preposterous, doing no exercise contributed to my getting weaker and weaker. At one point, I had to switch from 16-ounce water bottles to eight-ounce bottles because the larger container was too heavy.

Eventually, I decided I’d do whatever exercise I could manage. It was a good move, if you’ll pardon the pun.

I started with the invisible nautilus. I figured I had enough strength to do exercises I once did at the gym – things like arm curls, bench presses and leg raises – if I used zero weight.

Slowly I advanced to wall pushups. Then I could start walking again. One day to the first telephone pole on my street, a few days later to the second telephone pole and so on. I was walking at the speed of a 95-year-old, but I was walking.

In retrospect, I credit exercise as a factor in a return to much-improved health. The arm curls advanced to two-pound weights, then three pounds, four pounds and upwards and onward. The walks got a bit longer and longer. Moderate exercise became possible once again.

I haven’t strapped on the cross-country skis yet, but I look forward to the day when that happens. The key for me with exercise is always, always, always, do only what I feel confident I can manage and no more. So now that I have a grasp of what my limits are, exercise has once again become a real good buddy of mine – all the time.

Helping yourself too much

Hey Jetsons fans. Remember the episode where Elroy gets a movie gig.

Well, if you don’t, here’s how it goes. Elroy gets chosen for a movie part, and Papa George is hanging around the set all day trying to help out his son, the director and anybody else who happens to be around.

But of course, George only gets in the way, messing up scene after scene. The director gets fed up, and George ends up being chased around by a variety of ferocious beasts, barely escaping with his life.

I hate to admit it, but sometimes I can be a lot like George.

That episode came to mind a while back when I was trying to ward off a cold. Like most people with Lyme, I’ve got enough microbes to handle, and I try fiercely to avoid colds and flu. But I overdo it sometimes, and my herculean efforts can get in my body’s way.

As I’ve mentioned in recent posts (maybe I’m overdoing this too), one of the Lyme bacteria’s main survival strategies is to overly boost a person’s immune system. This throws the immune out of balance and leads the person with Lyme to overreact to pollens, dust, molds, cat and dog hair, microbes, etc. and end up exhausted by the effort. And this gives the Lyme a chance to get the upper hand and make you miserable.

So I always keep in mind the need to not add to that overstimulation.

But all of a sudden my roommate is endlessly barking out coughs and making kazoo sounds with his nose, and I really don’t want that cold.

What do I do?

I dig into my supplement bag and pull out the vitamin C, the zinc, the herbal cold formula and a few other things, and I zing that virus with something every two hours. It works, as I get away with a few sniffles.

I’ve won the battle, but, unfortunately, it looks like I lost the war. One mistake was taking stuff in the middle of the night. I woke up with a stuffy nose, got up and wolfed down a few supplements. The resulting immune boost kept me awake for several hours.

I did this a couple of nights in a row, and I rose in the morning with no stuffy nose, no sore throat or other cold symptoms. But on day two I felt really tired and draggy with some of that old Lyme malaise. The kind you try to explain to the doctor and she comes back with a puzzled look. Then you say, ‘Doc, I just feel like crap.’

What it seems I had done was lose too much sleep and at the same time push my immune system out of balance by taking too many anti-cold supplements, giving the Lyme a chance to bash me over the head again. And it took several days to get back in balance.

This is just one example of how careful I have to be not to try to help myself too much. I try not to beat myself up over it because Lyme presents so many can’t win propositions. But I always have to remember not to take too many supplements and not overstimulate my body. I also have to avoid the danger of taking too much and thus drawing out more toxins than my body can handle at a given time.

So what will I do the next time my roommate’s cough sounds like something coming out of a Labrador retriever. Hmm, let’s see. How about rest and fluids?

Food Fight!

Have you ever had a food fight with yourself?

No, I don’t mean smushing a cream pie in your face or whacking yourself over the head with a jumbo pizza. I mean having an argument between your inner self and your outer self over which morsels of food on your plate you should eat and which you should shun.

This happens a lot with me, and I suspect I’m not the only person with Lyme with this dilemma. I think it results from Lyme causing people to have off-the-charts sensitivity.

According to the smart doctors, Lyme overstimulates the immune system as one of its survival mechanisms. It tries to get you flail away wildly instead of attacking it with a calm, measured, effective response.

Let’s face it. Those of us managing a severe case of Lyme are walking a tightrope. One false move here or there can bring misery. And I think this is what my finicky eating is all about.

My food fight goes something like this.

The outer me notices halfway through the meal that I haven’t touched the steamed kale. I push my fork towards it, but it’s like there’s a magnetic pull preventing me from reaching it. Then I go for a hefty chunk of salmon sitting next to it. Again something seems to be warning me away.

If it were a conversation, it would go as follows.

Outer self: “Hey, what gives. We’re really skinny. We need to eat.”

Inner self: “Look, I’m overstimulated as it is, and if you make me eat this stuff, it’s going to get worse, and I’m going to overreact to that stupid Lyme.”

Outer self: “Are you sure?”

Inner self: “Remember the last time you force fed me. We kept waking up all night sweating and felt lousy in the morning. You didn’t check the scale, but all that sweating means we didn’t gain weight, we even got a bit skinnier. The same thing happened the time before and the time before that. Clueing in yet?”

Outer self: “I guess you’re right. Sorry about that. I’ll try not to do that again.”

Inner self: “Hey, it’s your funeral.  Wait a minute. It’s our funeral. Smarten up, eh!”

One of the advantages of Lyme making me super sensitive is that I get a lot of feedback from my inner self. Especially when it comes to food. Yesterday, it was hold the parsnips, the day before no more cabbage and parsley please. Green veggies, for some reason, bring out the most red flags.

Yogurt is another one. I just stick my spoon into the tub and wait for inner self to say whoa with that magnetic pull feeling. Some days it comes after a few spoonfuls and some days after half the container.

The last while I’ve learned to negotiate with my inner self. I’ll lobby for a few extra forkfuls of chicken or those last two pieces of carrots, and the force field will ease off a bit. But I don’t push it. I’ve learned through experience that my inner self knows a lot more about what’s going on inside than I do, and when the outer me has a full-blown food fight with the inner me, all of me ends up losing.