Summer break! – Time to get outside

It’s ironic that something that increases your risk for Lyme is also something that’s very helpful for healing Lyme.

The crime many Lyme sufferers committed was having a love of fresh air and sunshine. If they’d stayed inside all the time, they probably wouldn’t have gotten Lyme in the first place.

But for me, having Lyme hasn’t killed my love of nature. In fact, I feel a lot better when I spend time outdoors. So that means I’ll be spending a lot more time doing that in the upcoming warm months and less time sitting inside blogging.

Thus, lymetips.com is on summer vacation. I may post a few times if something special comes up, but the plan is to increase the pace of healing by getting as much sunshine, fresh air and exercise as I can tolerate.

See you at the beach! And don’t forget the bug spray!

Photo: Eric Davidson

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LDI: What I’ve learned

Okay.Here are the stats. Eight months of Low dose immunotherapy. Five injections for Lyme and co-infections. Two instances of moderate flaring of symptoms, one mild to moderate flare, one mild flare, and one very mild flare. Seem to be closing in on the target dose.

So what have I found out on this long and sometimes baffling journey? One thing for sure is that it can be very difficult to find the target dose. Beyond that, here are some other observations.

Take it easy and get your rest after taking the LDI dose. It’s a tiny looking amount you’re taking, but it’s packed with dozens of Lyme and co-infection antigens. If you have a lot of co-infections, your body could be in for some heavy flaring if it’s not your target dose. The antigens are essentially homeopathic nosodes (made from micro dilutions of dead microbes), which can stimulate your immune system to fight. Dr. Ty Vincent, the founder of LDI, says that if you’ve found the core dose, you shouldn’t have any flaring. But finding the core dose takes time, and flaring is a lot more common than not flaring.

Take it especially easy once you’ve determined that you are flaring. I learned this with a recent dose. I could see a mild flare had started, but I had a lot I wanted to do that day. By 7 p.m. I felt dreadful. I scheduled extra rest in the following days, and from then on the flare caused no serious distress. Lesson learned: My body needed extra energy to handle the flare.

LDI doesn’t work as well for me in winter. I live in Canada where even mild winters like this past one are plenty cold. I found it much harder to tolerate a flare in January than I did in September. The reduction in fresh air and sunshine negatively affects immunity, as does the increased number of viruses and other other bugs kicking around in mid-winter.

Some flares may have a silver lining. In two instances, I felt better after the flare was over than I had before the flare started. This is not the way it’s supposed to work, according to what Dr. Vincent has said in interviews. This isn’t criticizing Dr. Vincent, who has done tremendous work with LDI, but in just about every field sometimes the general rules don’t apply to everyone. Several other people on the LDI for Lyme Facebook group noted they’d had the same experience of feeling better after the flare than before the flare.

If you’re very sensitive or have had Lyme for a long time or have a lot of co-infections, it’s probably best to do one set of antigens at a time. Along with LDI for Lyme and co-infections, you can add in yeast, mold and other antigens. I fit into all three categories mentioned in the heading of this paragraph, and I’ve had plenty to handle with the LDI for Lyme and co-infections antigens. I can’t imagine moving on to other things until I’ve found my core dose.

It’s a good idea to work on reducing microbial load before doing LDI. This is especially true if you have a lot of co-infections. As I mentioned above, an LDI dose can give your body a lot of work to do if you’ve missed the core dose. I’m very glad that I’d taken a lot of antimicrobial herbs and  done other microbial load reducing work in the time leading up to my first dose. If I hadn’t, the process so far would likely have been a lot more problematic.

Napping can be an effective weapon once you’re determined you’re flaring. I’ve found I can save myself a lot of misery if I take a nap as soon as I’m certain a flare has started. I don’t like napping, so I didn’t do this in my early days of LDI. But I have since found that my mother was right years ago when she told me that if you’re feeling sick, lie down and rest. Works for colds, flu and LDI flares. It’s probably good to increase fluid intake too.

I probably wouldn’t have wanted to try LDI when I was really sick. Finding your target dose can be an intense process that includes a lot of flaring. I’m at a point in my recovery where I can handle that, but in earlier days when I felt dreadful all the time, having a lot of flares may have placed too much stress on my body and provoked a serious setback.

Different batches may affect potency. This is controversial. Some people on the LDI for Lyme Facebook group say the doses don’t lose any strength if they were made many months before injection. Others disagree. All I can say is I initially reacted more strongly to an 18C dose from a fresh batch than I did to a 17C dose from an old batch (18C is weaker than 17 C, so I should have had a stronger reaction to the 17C).

Don’t assume the flare period is over when you start feeling better. I’ve had two instances where it looked like the flaring process was finished after seven days. But then on days nine and ten after taking the dose, I had my most intense flares.

It can be a good idea to take a break in treatment.  This happened to me this past winter. I had a near three-week flare, and it was time for my next LDI shot, and I still wasn’t feeling great. The picture wasn’t clear, so I decided to wait a few weeks until I felt better before resuming LDI. Things soon settled down, and now I’ve taken my next shot and things appear to be back on track.

It’s important to be very patient. An LDI flare can make you feel so sick you want to quit. And sometimes it can be a good idea to quit if the treatment is clearly not working and does not look like it ever will. But for most people, it’s a  matter of realizing this is a new thing that can be both very difficult to figure out while at the same time offering a real hope of substantial improvement and even complete remission from Lyme. Knowing that makes patience a lot easier to muster than would otherwise be the case.

Beating Lyme slowly and surely

You could liken living with chronic Lyme Disease to a high-wire act, or you might call it a knock-down, drag-out battle with a powerful and cunning opponent.

But I prefer a more peaceful comparison. To me, the daily struggle with Lyme is a lot like sailing.

Sailing? Here’s what I mean. To make progress in pushing Lyme into remission, you need to know how to take advantage of favorable winds, and how to avoid slipping backward when conditions are against you.

I’ll give you an example drawn from a recent daily journal.

I wake up feeling shaky after a rough night. A couple of small errors on my part along with a couple of unavoidable problems threw my hair-trigger immune system off course. As a result, I slept fitfully, waking numerous times, often with sweat pouring off me.

Not good. I think I got away with it this time, but too many sweaty nights with the immune system misfiring has a way of setting me back. Not only do I feel tired, but it eats away at my physical stamina.

So this day, I’m determined to pay close attention to my sailing, and concentrate on doing everything I need to do to successfully manage the day. I’ve been fighting Lyme for quite a while, so I’ve learned to follow signs my body gives me that let me know how things are going at a given point.

Some of what follows may sound over the top, but my body constantly gives me feedback on how it’s doing. Sometimes the clues seem odd, but after several years of seeing these signs repeat themselves, I’ve come to trust my interpretations of them.

I’ll start with clue No. 1, which isn’t the most pleasant way to begin. I’m speaking of my first poop of the day. Fortunately, it looks okay. Next come a bunch of other morning signs that present a mixed picture.

I start breakfast with a powdered probiotic. If it tastes weak, that suggests my body is asking for more of it due to some gut problem. But it’s strong. Yay. I then dig into a meal of quinoa crispbread, sunflower seed butter, and an apple. All is good except for the apple peel, which is hard to chew today. Yesterday, I had no trouble with a similar peel from the same bag.

That suggests there’s something in that peel my body doesn’t want today. I get resistance to my morning snack as well. I scoop out my usual sized handful of pumpkin seeds but only want half. I take these two signs to suggest my body is getting too much stimulation from foods and supplements, and this is part of what is edging my immune system out of balance.

The other morning signs don’t tell me much. The dumbbell I lift seems a tad heavier than usual, but that probably reflects a slight weakening of my body due to the previous night’s difficulties. I get a similar signal when I drink my daily solution of magnesium chloride crystals. It’s a bit weaker than usual, suggesting that my nervous system could use a bit more magnesium after a sweaty sleep.

At lunch, I get more resistance to food. About three-quarters of the way through the rice and eggs, my body tells me to stop. Again, too much stimulation, it seems. So I cut back my supplements a bit,  hoping this will improve my appetite.

I don’t reduce my midday dose of baking soda and water. Sodium bicarbonate, strangely enough, is a key indicator for me. When the baking soda tastes weak, it usually means my immune system is in danger of overreacting, and could use more of the sodium bicarb to increase alkalinity and slow things down. When it tastes moderate, this is a good sign. When it tastes strong, it suggests my immune system is engaged in some fight and doesn’t want to alkalize.

By now, I’m getting a message that I need to chill today, and avoid unnecessary stimulation. Unfortunately, I have to work on my taxes in the early afternoon. Always good for a shot of stress. When I take a break, I walk by a mirror and notice that my right ear is crimson. This redness suggests that I am indeed stressed and starting to overproduce histamine.

Time-out. Enough taxes for the day. Now is a good time to drive over to the beach and do some light exercise. It works. When I return, I feel relaxed, and my ear is back to normal.

It seems my body is now getting back in sync. I want all the pumpkin seeds this time at my afternoon snack, and, when I do another set of dumbbell exercises, they feel lighter than in the morning.

But at dinner, I’m still fussy, turning half the broccoli away, and leaving behind a bit of chicken as well. Once again I make a small reduction in supplements, and decide that a relaxed evening is in store.

So that’s what I do. I add a little extra meditation and prayer time, watch a comedy on TV, and head to bed. The signs are now positive. My evening dose of bicarb tastes as it should, my ear looks fine, and all other indicators seem in order. I’m finished sailing for the day, and I guide my body into harbor, er, bed. Looks like a good night ahead.

Photo: Eric Davidson

Boring Lyme to death

This blog post is going to be a real snoozer.

Rest is one of the most powerful weapons I’ve found in fighting Lyme Disease. So I’ll try to liven up the topic by talking about things like power napping, mega-meditating and super sleeping!!!! Now didn’t those exclamation points perk you up?

Maybe the most important trick to dealing with chronic Lyme is never to let yourself get tired and rundown.

I came across an article a while back that described it this way – “It’s a question of whether your voltage is adequate for your immune system to keep it (Lyme) under  control.”

I like that. It’s about your voltage. And how do you keep your voltage high? By making frequent visits to your battery charger, otherwise known as your bed.

I’ve still got a way to go before fully getting over Lyme, so I spend a fair bit of time charging myself on my queen size battery pack. Not usually for very long. Five minutes here, 10 minutes there, a few times throughout the day. A little rest after meals, a little rest after exercise, and a longish sleep at night.

If I were working in an office, this would be more difficult, but I know a friend who spends lunch hours and breaks taking catnaps in his car. I remember another friend who installed a small couch in his office and did likewise.

Even when driving, naps can be managed. If I drive for an hour, I’ll find a place to stop and shut my eyes for five minutes. I could go farther, but I stop before I get tired, so I won’t get tired. Keeping the voltage high.

Experts suggest that getting to bed early can be extremely helpful for anyone managing a case of Lyme. They say the hours of sleep you get before midnight are considerably more valuable to your health than any other sleep hours.

Taking their advice, I’ve gradually pushed my bedtime back from 10 p.m. to 9:45 p.m. to 9:30 p.m. I’ll make exceptions for social events of course, but I diligently try to stick to a regular lights-out time whenever possible.

This is not a particularly exciting way to do things, but it works. Frankly, I just want to get fully well, and I’m willing to sacrifice all the late night TV in the world to reach that goal.

So you may be thinking that anyone doing this sort of thing might as well become a monk. I don’t think that’s necessary, but I find that it’s a good idea to take a page from the monk’s playbook and meditate regularly.

Following their lead on living a peaceful, restful life would also be sure to give Lyme a hard time. Come to think of it, I wonder if monks get Lyme disease. Hmm.

I do a very simple 20-minute meditation exercise once daily. It’s called “Soften and flow”, and it works, reliably shifting me into the parasympathetic nervous system relaxation response if I’m not there already. You can find tons of other meditation approaches on the web.

So that’s all I have to say about sleep, naps and meditation. You could say I rest my case. Anyone still reading? Anyone still awake?

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.

Rope a Lyme dope

Remember Muhammad Ali and his rope a dope trick. Well, that was a long time ago, so maybe you don’t, but here’s how it goes.

Ali was the world’s heavyweight boxing champ for much of the ’60s and ’70s. He didn’t know it, but he was stealing one of the Lyme bacteria’s killer strategies.

In many fights, he would spend the 14th and second last round huddled against the ropes, gloves up covering his face and his brawny arms covering his torso.

His hapless opponent would pound away at Ali’s rock-hard midsection, and the champ would barely feel it. He didn’t punch back, but just stood there getting his second wind.

Then came round 15 and Bam!, a fresh Ali knocked out the dope who’d just worn himself out a few minutes before.

Sound familiar Lyme sufferers? Who among us hasn’t been that chump? While Lyme bides its time waiting for an opportunity to strike, we often wear ourselves out trying to fulfill our commitments with the limited energy we have. When we do have a window where we feel better, it’s so tempting to try to rush to get things done. Never enough time. Always catching up.

Like so many people, I didn’t know I had Lyme when I first got sick. There was no bullseye rash and the dozen or so doctors I tried to get help from never even brought Lyme up as a possibility.

I felt absolutely dreadful all the time, but the doctors said there was nothing wrong with me. I asked if I should stop working and they could see no reason to do that. “You can’t hurt anything,” one said. And I believed him.

So I kept working, thinking it was some flu bug that would soon pass like all the other flu bugs had over the years. Like most people, I had a stressful job, and I kept running around, wearing myself down until I finally had to stop working.

I desperately wish I had that to do over again. The way to beat rope a dope, I’ve learned since, is to chill. Be like Ali, conserving your energy. Now if I start to feel I’m rushing around too much and getting tired, I stop and take a brief nap. I also take a short nap after lunch and spend time meditating after dinner.

I don’t work full-time, so I can do that. But even if I had that kind of employment, I could make adjustments to keep myself from getting overtired. For example, I have a friend who spends many a lunch hour sleeping in his car.

So, my rule is never, never, never knock myself out. Exercise, yes, but not to the point where I’m bushed. And maybe there’s something I really want to do, but it’s going to require getting stressed out. Regretfully, I pass on it. Too many times I’ve overextended myself and given Lyme the upper hand in our daily tussle.

By refusing to play the dope anymore, I’ve slowly been able to gain back ground from my arch-nemesis in the black corner. It’s rematch time. Lyme won the first battle, but I’m winning the second one.