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The Trouble with Triggers

Monday, March 10, 2014

These past few weeks, I’ve been feeling worse. For a while, I was confused. I thought things were getting better. I tried to trigger the Lyme infection using a series of vaccinations. Nothing happened at first. So I assumed that the vaccinations did not have a triggering effect and forgot about them.

About two and a half weeks after the first vaccination, I started having heart problems. It seemed random. Then last week, when I was at the Lyme Support Group, giving an update on my life and health, I mentioned that I’d had the vaccinations. Then I talked about my disappointment that they were ineffective. Later on I talked about how I was feeling worse. Somehow, saying it aloud made something click inside my head, not right away, but in the car on the way home. Over the weekend, I was talking to a friend who is an immunobiologist (not a medical doctor) and she mentioned that it would probably take about two weeks for the immune system to mount a systemic response to a dermal vaccine (which is what I got). The immediate, visible response on my skin didn’t confer systemic immunity, which took more time.

Now it all makes sense. I got the third and last dose on Thursday of the rabies vaccine. An immediate response appeared on my arm. Within a few hours, I felt more Lyme symptoms than in a while. It turned out to be an effective trigger. When I asked her about this, she suggested that the third injection was able to stimulate a fast systemic response because my body had already “learned” how to respond to the infective agent.

All this past week, I’ve been thinking about triggers, about my last musings about which infection(s) might be at the root of my heart problems, how I know when to stop coiling for an infection, and why it is so hard for me to consistently exercise (or do anything consistently besides using the coil machine).

The Trouble with Triggers

The problem with “curing” Lyme is that it is often a functional cure, more like putting it into remission than getting rid of the infection. In that way it is similar to many other illnesses, including, for example, the virus that causes chicken pox. For most people who are old enough not to have been vaccinated, once they are “over” the initial illness, they never experience the symptoms again. But for the unfortunate few, a bout of high physical or emotional stress can trigger shingles (or even worse, a second bout of chicken pox). The virus lives in the nervous tissue in a dormant form. It is rare under “normal” conditions that the virus reactivates.

It is less rare for a dormant Lyme infection to reactivate. Several people I’ve met have either ongoing symptoms, indicating continued infection, or have had full relapses, though not necessarily with identical symptoms to the first round of Lyme Disease, even if that first round was advanced, chronic Lyme Disease.

My way of trying to prevent a future outbreak of the Lyme infection once I get to the end of coiling is to try to trigger it over and over until there is little or no dormant bacteria left. I’ve been working on this for a while. The first new stress I generated was a reduction in nutritional and herbal supplements that made my immune system stronger than it is on its own. Then I added back in foods that trigger sensitivities. This is an ongoing stressor that I do periodically. As long as I keep coiling for and killing the Lyme infection, the sensitivities decrease. The last food sensitivity I still have to conquer is eggs.

Most recently, I’ve been trying a different trigger: vaccinations. I’m not getting gratuitous vaccinations, but ones appropriate to anticipated travel. These are succeeding in triggering the infection. I feel temporarily worse. In fact, I feel worse for longer than I did even on eggs.

The trouble with triggers is that it is difficult to control them. I don’t know in advance which infection will get triggered: Lyme? Bartonella? Babesia? some other infection I’m not yet coiling for? Eggs trigger all three known infections. The recent vaccinations seem to trigger Lyme mostly and possibly Bartonella. I’m not sure if my Bartonella symptoms are from not coiling my whole body while I coil for Babesia or if they indicate a vaccine initiated flare.

The next problem with triggers is that I don’t know how long the flare will last. For example, with the supplement cessation, the triggered symptoms lasted a few weeks, but diminished with each Lyme and Bartonella coiling session. With eggs, the Babesia infection woke up and hasn’t quite gone away yet, but the Lyme flare lasts only about 48 hours, assuming I coil within 24 hours of exposure. With the vaccinations, the triggered symptoms have been sustained over several weeks, diminishing after each Lyme coiling session, then coming back again within 24-48 hours. Not my favorite trigger, but possibly the most effective one.

Related to this problem is that I don’t know how long the trigger will take to generate a reaction. I know when I introduce it into my body, but I don’t know when the symptoms will start to appear. That’s why I got so confused about the symptoms triggered by the vaccinations. Unlike the symptoms triggered by eggs which appear about 1-2 hours after ingestion, or those triggered by wheat which appear in as little as 40 minutes or as long as several hours later, symptoms triggered by vaccinations, at least this time, initially took more than 2 weeks. After the third vaccination for the same disease, it took only a few hours. When I take my last vaccination for a different set of illnesses, I don’t know how long it will take for the symptoms to be triggered.

Another problem with triggers is that it is impossible to predict which symptoms will flare…and that I have to suffer through those symptoms! I didn’t know that the heart problems might be related to the vaccination. It seemed so mysterious and discouraging when they appeared. I was pretty upset by the random timing and the fact that cardiac symptoms are so debilitating. Unlike wheat symptoms, which primarily cause pain in my ribs and joints, cardiac symptoms prevent me from completing anything more than minimal daily functions. After most of the heart symptoms mostly resolved, I’ve been left with joint pain in my hands and spine and shoulders, as well as knee pain and fatigue as the primary Lyme symptoms. Other symptoms have included a return of floaters in my vision and some digestive distress. Of course, a few days after the last vaccination dose, I’m starting to have cardiac symptoms again.

The final and worst trouble with triggers is that they make me feel like I’m not getting better. I believe that I have gotten a lot better over the past three years, and even more drastically and obviously better since the summer. I’ve had whole weeks of being well and living my life the way I’d like it to be when I no longer need to coil (well except for three hours a day coiling during these good weeks!). When I trigger the Lyme and other infections, I feel worse. I feel like I haven’t made progress. I feel like this illness will never be over. However, thus far, except for the vaccinations, the triggers have had less and less of an effect as I use them and coil successively. The other exception is wheat. Wheat is my way of knowing how active the Lyme infection is. When it is active, I get rib pain within an hour. When it is mostly dormant, the rib pain might take several hours to appear or be very faint. So these triggers serve their purpose and seem to help me rout the infections, going a layer deeper each time I use a trigger.

There is one more idea I’ve been pondering. It seems that if all I wanted was to feel better, as in reduced symptoms, I could have had that this autumn. I could have stayed on all the supplements indefinitely, maintained all the food restrictions, avoid vaccines, be careful about not getting too stressed or eating food that might in any way be bacterially contaminated. It would have been a trade off, feel okay but have huge limits on my daily life. The philosophical conclusion I’ve come to is that in order to feel good sooner, I’d have to content myself with a permanent, mostly dormant, infection load, and I’d have to limit my life in ways that I find unacceptable. It is nearly impossible to avoid all triggers forever, so I’d keep the coil machine around for when I run into one unexpectedly. Instead, I’m choosing to tackle them head on and to reduce, hopefully eventually to eliminate, their power over me. In the end, I’ll be stronger and more fully able to live the life I want to lead.

Cardiomyopathy Revisited

In the last blog post, I talked myself into thinking that Bartonella is the root cause of my various cardiac symptoms, which include a tricuspid valve prolapse, chest pain, shortness of breath, fatigue and sometimes low blood pressure. In the interim, I’ve begun to think that that simplifies the picture too much.

I spend a lot of time trying to understand which infection causes which symptom. That makes it way easier to decide which infection to target at any given point in time. The reality is that the chronic tick-borne infections cause a variety of overlapping symptoms. Fatigue is a constant companion when I have a flare of any kind. Neuropathy in the form of pain, tingling and other strange sensations comes around with both Bartonella and Lyme flares. And that is just two of the examples, the list could be quite long.

Beyond the overlapping symptoms, there are the interacting problems. This is what I’ve been thinking about my heart. It is possible that the Bartonella infection contributes by messing with my vagus nerve and causing it to stimulate inappropriately, as it does with my intestines and less frequently these days, causing extreme hand pain. It is also possible that the reduction in blood pressure and other blood disturbances caused by Babesia exacerbate any minor cardiac symptoms that might have been less noticeable when my blood pressure was normal and able to transport and exchange oxygen, carbon dioxide and various dissolved substances in its normal way. That might explain why the cardiac symptoms diminish or even seem to temporarily vanish when the active Babesia infection is killed off. Finally, the Lyme infection may have tampered with the actual heart muscle in a way that I’ve heard about anecdotally from other patients, but is not as clearly causal as the well known AV heart block that appears in Lyme literature. Even when I am not experiencing air hunger or low blood pressure that I associate with Babesia, I feel heart pain and can hear the tricuspid valve prolapse with a stethoscope during Lyme flares.

Each contributes its component symptoms, but back when all three infections were raging, I was fully incapacitated with cardiac symptoms that seemed like a product (multiplication) of their parts, rather than the sum of their parts. These interactions might explain why when I fainted in 1995, when I didn’t have Lyme or Babesia, I recovered relatively quickly, but in 2001, when I had all three infections, I ended up discovering the tricuspid valve prolapse and have had ongoing problems since that time that coincided perfectly with other symptoms of the infections.

Endpoints

In the last post, I mentioned that I planned to do at least 14 full body coiling sessions on Babesia before I stopped. The symptoms have been mostly gone. The night sweats have gotten less frequent and sometimes don’t occur for a few nights. But I missed a few days, the night sweats came back, and now I’ve been coiling the full body Babesia protocol daily. I prefer to keep going until the last symptom has been gone for at least 2-3 weeks.

This time it is a little bit more complicated. I’m not totally sure that the night sweats are from Babesia. Certainly they are affected by whether or not I coil for Babesia, which could be that I haven’t reached an endpoint in terms of killing the active infection, or that as the Babesia die off, something else is presenting itself. The only way to know would be to go back to trying out multiple other frequencies until I find one that works, or to keep coiling away at Babesia until the night sweats disappear.

I won’t be implementing either plan in the short term. I’m taking a two week coiling break starting Thursday, when I go to visit my sister’s family. Then when I get back, I’ll figure out what I need to do for Babesia.

Looking back, however, I stopped coiling for Babesia prematurely in December 2012. The night sweats, which were my last Babesia symptom, got worse for a week, then they disappeared. I didn’t deal with Babesia symptoms again until this year. It is possible that my body could defeat Babesia while I’m taking my coiling break. Only time will tell.

New Habits

I am so excited when I feel well. I have a list of things I’d like to spend my time doing, including doing exercise on a daily basis (even if it is just walking around the neighborhood and occasionally doing something more rigorous), finishing my book about how to use the coil machine, cooking and baking foods I like, going outdoors to the local beach. Lots of things I’d like to do. I can manage to do them sometimes. But other than coiling, I’ve had difficulty developing new habits.

Sometimes I think this is a moral or psychological failure on my part. If I tried harder, prioritized better, or somehow changed the way I organize my time, I could be more active and do the things I enjoy doing. Today, though, as I was writing about triggers, I could recognize the ups and downs I’ve been experiencing. When I have no pain or fatigue for a day, I do a lot. It’s incredible. When I have pain, fatigue, cardiac symptoms, recurrent bowel problems (as in recurring all day long), I slow down. I can’t concentrate. I have a hard time moving around. I have a hard time motivating myself. When I do too much on a day like that, I find the next day to be totally wasted, with a strong need for rest.

Then there are the in-between days, when I’m mostly okay, and only somewhat distracted by the myriad of symptoms. I can do something, maybe two things, on a day like that. That’s when priorities become a big deal. Which is the one activity I’ll do today? If I have any energy or concentration left after that, what is the one other thing I should do? It’s rough. So on those days, I might have to go food shopping, and that’s just the way it is. Or I might decide to blog or clean up the kitchen. Or I might socialize with friends. I just can’t do all I want to when I’m having a hard time physically.

Thus I remain hopeful. As I have more good health days again, when the triggers lose their potency because more of the infection load has been eliminated, I can go back to developing the life habits that make every day a good day all around.

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