Tag: immune system

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.

Seven Things My Lyme Doc Taught Me

It took me a long time to find her, but I am fortunate to say that I have a good Lyme-literate medical doctor (LLMD) who has taught me a lot of important things.

If my count is right, she was the 14th doctor I saw before finding someone who was able to help me. Sounds like a lot, but many Lyme patients have a longer list. She could help because she had been through something similar herself, and had the knowledge and compassion to be able to help others get through their ordeals.

So what has she taught me? Probably more than I’m outlining below, but these are the things that come to mind.

#1 – A LOT OF THIS IS ABOUT TOTAL LOAD – Total load means the total amount to stressors your body is facing. Obviously, Lyme is a big stressor. So if you have Lyme, you have to reduce the other stressors.

Doctors who subscribe to the total load theory use the rain barrow analogy. Stressors are like rain that falls into a rain barrow. As long as the rain stays in the barrow you’re OK. But too much rain (i.e. stressors) and the barrow overflows. That’s when you get symptoms.

There’s no shortage of stressors – Lyme, other infections, emotional and physical stress, heavy metals, pesticides, poor diet, dental amalgam fillings and other dental problems, candida, etc., etc. One of the keys to getting healthy is eliminating and reducing stressors and keeping the water from spilling out of the barrow.

#2 – B VITAMIN SHOTS CAN HELP A LOT – One doctor told me not to bother with B12 shots because he said I didn’t need them. Another doctor told me B12 shots were quackery. But my doctor said I should try both B12 and B complex injections. She was right. They helped a lot, giving me some energy at a time when that commodity was worth about a million dollars an ounce to me.

#3 – CATCHING COLDS OFTEN MEANS YOU MADE A MISTAKE – During one of our visits, my doctor was chastising herself for getting a cold. Turns out she felt she made a mistake.

I’d always thought catching a cold or the flu was an accident that couldn’t be helped. But I now see it as something that’s an unavoidable accident about half the time and an avoidable mistake the other half.

Maybe I forgot to wash my hands after being in public during cold and flu season, maybe I skimped on sleep and my immune system suffered, maybe I got stressed out on a day when I felt the first sign of a tickle in my throat. Or maybe something else. This doesn’t mean being a germophobe, it just means that when you have a serious illness like Lyme, you need to be careful to not pick up other infections.

#4 – YOU CAN IMPROVE YOUR EYESIGHT – I’ve always been looking for ways to improve my vision, and I’ve asked several eye doctors this question. They all say there’s nothing you can do.

Not true, says my doctor. She had a strong prescription of -5.50 that fell to a moderate -2.50. That’s a huge drop. She said she did it by gradually healing infections in her body and eyes, taking a lot of antioxidants and intravenous vitamin and mineral infusions.

#5 – PUT THE TOILET LID DOWN EVERY TIME YOU FLUSH – This thought had never occurred to me. But one day I noticed a clipping on her office billboard showing results from a study that showed flushing with the toilet lid up results in a slew of often pathogenic bacteria flying around your bathroom. I’m not sure how much effect this has on total load, but every bit counts.

#6 – EAT ALL YOUR FOOD DURING A SHORT PERIOD OF THE DAY – I’m not sure if this works for everyone, but it works for me. The theory is that your body likes having a decent sized mini-fast every day. I’d mentioned I was having gut symptoms, so my doctor suggested trying to eat all my food in an 8-12 hour window each day.

Eight hours is tough to manage, but most days I eat my food in an 11-hour period and give my body 13 hours to fully digest it and work everything out. Doing this has helped reduce my gut symptoms.

#`7 – NEVER GIVE UP – My doctor has told me stories of her own desperate efforts to stay alive so her young son wouldn’t lose his mother. She never gave up and taught me the same.

The truth with Lyme is you never know when things are going to turn around in your favor. There are umpteen ways of treating it, and if you keep trying, you’re likely to find one that will work for you. So there’s good reason not to give up. It also helps, a lot, to find a doctor who won’t give up on you. When I was down and out and bedridden, my doctor made 10 house calls to try to get me back on my feet. That’s right. House calls. I told you I was fortunate.

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: 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.