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.

Choosing a Living Space That Helps You Heal

My preference would be to own a nice house, complete with wife, picket fence, and a couple of kids. But Lyme Disease hasn’t cooperated with that plan.

Instead, I’ve become a bit of a nomad. Because the disease has drastically eaten into my savings, I’m a renter. And because of the need to find affordable, mold-free housing, I’ve moved several times in recent years.

The upside is that I’ve found the type of place that best suits me in my fight to defeat Lyme and regain full health. I don’t think I’m much different than a lot of people with this illness, so what I’ve found out might help you too.

I’ve learned that where I live makes a huge difference in how effectively I battle Lyme. My Lyme-literate M.D., who is a specialist in Environmental Medicine, has said this to me several times. Now I’ve learned from experience that she’s right.

Because Borrelia Burgdorferi hates oxygen, I seek oxygen. Thus I like places that have a lot of windows I can open. While most people want their living spaces airtight to save on heating costs, I prefer lots of cracks to let more fresh air in. I don’t mind putting on a sweatshirt. I like sweatshirts.

Because mold and bacteria tend to grow in the dark, having many windows also is important for letting in plenty of sunshine. Having lots of light kills microbes and it also helps prevent depression, which often comes with the disease.

Mold is a difficult subject. Some Lyme doctors say it’s impossible to get better if you’re living in a moldy space, while all agree that mold makes a return to health more difficult. Studies show that roughly half of dwellings have had water intrusion at some point or other. This often will lead to mold problems.

So mold is a hard thing to avoid. I lived in one place for six months, wondering why the pace of my healing had slowed. Then the landlord pulled up the carpet in my bedroom. Horror of horrors. A black, five-foot long spot of mold in the corner of the room. I soon moved out.

It surprised me because I’d done a lot of research on mold, and I thought I knew how to steer clear of it. But unless you can afford to have a mold inspector check the place out beforehand, all you can do is study the subject, inspect the place yourself, quiz the landlord, and hope for the best.

Before getting Lyme I preferred a big place, but I’ve since changed my view. Smaller is easier to manage, easier to clean, and uses up a lot less precious energy. Reducing possessions also has been helpful. The less stuff you have, the less stuff you have to trigger allergies, outgas toxins, and gather dust, mold, and microbes.

Focusing on the bedroom is crucial because that’s where I spend the most time. I try to keep it as free of stuff as possible and as clean as possible. Having hardwood floors, both in the bedroom and in the main rooms, helps a lot too. Even before I got sick I much preferred hardwood to carpets, which contain toxic chemicals and attract mold, dust, and microbes.

The best place I’ve lived had a small bedroom with hardwood floors and only basic furnishing. It also had a big west-facing window that let in tons of fresh air and warm afternoon sunlight to naturally clean and freshen the room.

Clean air is a major priority. I once liked being downtown where a lot more is happening. But now I’m a suburbanite, looking for places on tidy streets far away from the noise and pollution of major arteries and highways.

I’m also a short driving distance to a beach, which I now consider an essential factor when looking for a place. I’ve clearly noticed major increments in health improvement when I can spend a lot of time at the beach.

Parks are good, but beaches are way better. You get more Vitamin D from the sun when trees aren’t blocking your path to it, and the breeze coming off the water blows allergens out of the way. And, like most people, I find that being at the beach is just plain fun and relaxing.

There are, of course, other factors to consider. To help sort it all out, I’ve developed a checklist I take to every apartment I look at.

Whether the place has forced-air gas or electric heating is an important consideration. I prefer radiators and electric heating (especially if the landlord is paying for it) instead of forced-air, which can blow unwanted mold and toxins into the main rooms. I also prefer an apartment in a house, or at worst a small apartment building, so I’m not in the wi-fi soup that comes with big apartment buildings.

Many Lyme experts, like Dietrich Klinghardt, MD, emphasize how bad wi-fi and other sources of electromagnetic radiation are for Lyme patients. So it’s ideal if the place can be hooked up with cable for Internet and a landline for phone needs. Checking around the neighborhood to make sure there are no cell towers or banks of high voltage power lines nearby is another good idea.

Another potential pitfall may crop up if you have allergies, which many Lyme patients do. Trees, flowers, and shrubs are beautiful, but they can cause severe allergy problems if your bedroom happens to be very close to them. If you are on a lower floor, you should be especially careful about not having a lot of trees just outside your window that shed leaves in the fall. That can create a serious mold hazard.

Having to keep all these factors in mind makes apartment hunting something anyone with Lyme would rather avoid. I’d be thrilled if my health status suddenly jumped from getting much better to total remission and I could again dream of buying a house. Until that happens, though, I always have my healthy apartment checklist ready in case this disease forces me to look to rent somewhere else.