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.

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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.

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.