It’s been a rough couple of weeks. I’m coiling for Bartonella a lot now: minimum twice a day on my head, spine and torso, and most days, once on the rest of my body. I’m way more disabled than I was even a month ago, when I went to NYC to visit my parents. The herxes are the major culprit.
The herxes are changing. I have less insomnia, fewer headaches, and less intense and less frequent kidney pain. At the same time, I’ve compiled a more comprehensive list of the herx symptoms from Bartonella as I experience them. They look more and more like the symptoms from Bartonella flares. So I put together that list as well. (These will be in the next blog post…)
My life, however, has slowed down again. Many days, I get to do only one or two activities. My pain level is higher. My concentration lasts only an hour or so a day. I’m crankier. I’m more tired. I meant to record more of this on a day to day level, but I just haven’t had the concentration. I feel scattered and unproductive. Then when I can sit, I have pressing things to do (like making and sending my dad’s birthday present), and I find that I’m out of juice pretty quickly.
Even with all this going on, I take time to consider my observations. I came up with a hypothesis when I was getting rid of the active Babesia infection, both times. It seemed that at first, I had Babesia symptoms that were systemic: migraines, light & sound sensitivity, low blood pressure, heart problems, extreme fatigue, night sweats, and altered sleeping–unable to fall asleep at night then unable to get up in the morning.
The second phase came as I started to coil. I coiled a little each day, in my estimate, just enough to prevent the infection from getting bigger, although, it turns out, I was slowly whittling away at the infection. This second phase came with a mild reduction in symptoms, except for night sweats, which I think were part of the herxes. I wasn’t quite dead tired all the time; interspersed were a few good days. Mostly, however, I had all the problems, only a little less. For a while, they seemed to be slowly fading away.
The third phase was when it seemed that the Babesia infection struck back. Everything got worse. So I coiled more. The symptoms would calm down. Then they got worse again. So I increased my coiling time until I covered my whole body. The symptoms calmed down. Then they got worse again. So I started coiling twice a day. The symptoms calmed down. Then they started to get worse. So I added in a third coiling session, just to clear the Babesia in my blood. The symptoms stayed bad for a while. Then they calmed down. Then they started to go away.
At that point, I was coiling a lot. I came up with the idea that once I got below a certain infection load threshold, the Babesia protozoa would become more active. They would replicate faster. They would begin to try to make my body more hospitable to their needs. If I coiled the same amount as they replicated, we were stuck in a stasis, until they could figure out how to reproduce faster. If I coiled more than that, they would either catch up or the infection load would continue to be reduced, until finally, there was no active infection left. I think that towards the end, some number of protozoa would go into a dormant form and hide in my bone marrow, or possibly my spleen, to wait for favorable conditions to return.
When the infection became active again, it started with some increased fatigue, followed by light sensitivity. Then I got a migraine. Then the sleep and blood pressure problems started. But it was a slow process that took me some time to understand. When I coiled it away again, a similar phenomenon happened.
At the time, I assumed that somehow, the protozoa had some way of determining how many were in my body, whether they had a sustainable population or not. I suspected they have some biochemical signals to tell each other what’s going on. But I felt a little bit like a quack, coming up with my hypotheses based on observations of exactly one subject (myself).
Trying to figure out Lyme was a little trickier. At the very beginning, I coiled tiny amounts, had big herxes, then waited a week or two to try again. Those first eight months, a little coiling went a long way. My symptoms stayed about the same, but my body got stronger and stronger. I started to have a glimmer of stamina. I started to be sturdier on my feet. I started to have a little bit of muscle tone. Nothing major. I went from feeling like I got hit by a mack truck every morning to feeling like I’d been run over by a Hummer. Still horrible, but a noticeable difference. I started in February 2011. My first obvious Lyme flare was in September.
Over the course of each Lyme season, I start with a flare. My symptoms appear overnight and get worse over the course of several days. As I coiled, about once a week, the symptoms of the flare and the symptoms from the herxes diminished after each coiling session. This was true for my first two seasons of Lyme coiling. Then the third season, autumn 2012, I discovered that I had to coil more frequently than once a week to keep the trend of reducing symptoms. If I waited a whole week, the herx symptoms after each session were just as intense as when the flare started. Hmmm. So I coiled more frequently, every five days. That kept me going through the whole third season.
Now I’m in my fourth season. Every five days wasn’t often enough to get the herxes to start diminishing in intensity. Neither was every four days. So I do it every three days. I still get herxes. They come with every coiling session. I don’t finish with one before I coil and start the next one. Despite the back up of toxins, my body is able to get them out fast enough for me to see improvements. From week to week, I’m seeing the Lyme-related symptoms diminish. Most night I don’t need 12 hours sleep, only nine or ten, and I’m less groggy when I wake up. When I get cold, it only lasts a few hours rather than all day or a few days, like it did in January. The joint pain and popping hasn’t gone away, but most of the time, it doesn’t hurt quite as much. The all-over muscle aches are still pretty intense, but they last six hours rather than a few days. Still bad. Not as bad.
I’ve read over and over that Lyme bacteria reproduce every 28 days. I bet that is true under the conditions that most people with chronic Lyme live, including those that are taking long-term antibiotics, as I did. I don’t think it is true under all conditions.
My “evidence” is that the symptoms of early stage Lyme are very different than the later stages. I believe it is true that at least 4 weeks of doxycycline is probably enough to knock out many cases of early stage Lyme. I think this works because the bacteria is reproducing rapidly, trying to populate the host with enough bacteria to sustain a colony. While reproducing, it is more susceptible to antibiotic interference. Once it reaches critical mass, it slows down its reproductive activity, making it less susceptible to antibiotics, and requiring much longer, more intensive treatment.
I believe, now, after six years of living with Lyme and no antibiotics, three years on antibiotics and two and a half years of coiling, that there are two stages of chronic Lyme. The second stage is after the bacteria has reached some critical mass in the body. It then goes about modifying its environment (the human host) to prevent the host from eradicating it. This is the phase where it changes the immune system, including destroying antibodies or attacks the white blood cells that make anti-borrelia antibodies, lowers the host body temperature, changes metabolism, infiltrates locations such as joints and cerebrospinal fluid that hard for the host immune system to reach and begins to suppress other infections. I imagine that at this point I think the bacteria is still reproducing more often than every twenty eight days, but fewer metabolic resources are for reproduction, more is spent on host modification. For me as a host, this is when I started having menstrual problems, getting tired more often, having joint problems in my wrists and developing heart problems. I think that it can take a while (years even) for the transformation to occur, but that it is a distinct phase from the one which causes severe disability.
The third stage occurs when the Lyme infection becomes activated in a host that it has already modified. It could activate because some other stressor on the host suppresses the immune system even further (car accident, food poisoning, flu, death in the family, divorce, etc.). Or it could be that the Lyme infection reaches a second critical density. At this point, its reproduction rate is reduced to every 28 days, and many of the bacteria may be out of the reproductive cycle altogether (cysts, biofilms). Instead, its primary metabolic function is to keep enough bacteria available in case a vector shows up (e.g. a deer tick) to allow it to propagate to a new host. At this point, the host, suffers from the metabolic activity of a strong infection, essentially being poisoned, with all the familiar symptoms of chronic Lyme. I think that seasonal flares happen in this third stage, but that the host is so overwhelmed with toxins and an inability to clear them out, that it is very difficult, if not impossible, to discern the flares.
I think that when we kill the infection, at first it does nothing in response. It’s load is so high that it just keeps on poisoning us, reproducing slowly, and forming cysts in response to external attempts to kill it. Some of the bacteria die. I think it is possible to reduce the infection enough that it goes back into the second stage, if we are able to clean up and repair our bodies as we reduce the infection load. However, I found that while I was on antibiotics, my body didn’t do as well with the rebuilding phase. With the coil machine, I’ve gotten stronger more rapidly than I’ve seen symptom reduction. In the second stage, I think the bacteria reproduce more rapidly. In that second stage, I think we start to be able to observe seasonal flares when activity is heightened during tick season. Then it calms down again when ticks are not feeding.
I imagine that as I reach a point where there is a lower cyst load and a lower active load, the Lyme bacteria will reproduce more quickly during the season flares, trying to re-establish a full load, and I’ll have to coil quite frequently to reach an endpoint where I get rid of it. In fact, I think it is happening this Lyme season. I can’t quite imagine having to coil for Lyme head to toe every day. But it is a possibility. The other possibility I’ve heard of is that when the flares happen with lower bacteria loads, meaning there are fewer cysts available to become active, two or three coiling sessions are enough to end the flare for the entire season.
Again, as I write this out, I can tell my hypotheses have a basis in my observations, but I have no way to test them: I have no controls nor the methods to sense the bacterial load or its metabolic functions. Instead, I’m offering my hypotheses as a possible way to make sense of what Lyme does to a person.
I think I’ve had Bartonella since I was a toddler. In some ways, I can’t imagine life before Bartonella. I think it is a very different kind of infection than Babesia, which zaps all of a person’s energy and lays them out leading to chronic disability if it isn’t killed by the immune system right away. I think it is different from Lyme, which modifies the body of its host and poisons it, if it isn’t eradicated by antibiotics in the first few weeks after the initial infection.
I think I could have lived with Bartonella my whole life without ever figuring out that I had it. Instead, it appeared as an intermittent mystery, a recurrent syndrome, usually following a major physical or emotional stress. Prior to Lyme, it resolved and went dormant on its own, usually after my body became strong, sometime after recovering from the stressful event.
I can’t really remember what Bartonella was like at the beginning. According to Dr. Burrascano’s Advanced Topics in Lyme Disease, it has a gradual onset. So there may have been nothing out of the ordinary for my mother to see after I contracted the infection through a tick bite.
Throughout my childhood I had bouts of strange problems: constipation bad enough to send me to the emergency room and to require nightly doses of mineral oil and enemas; a summer of fleeting neurological pains that made me want to put band-aids on spots with short-lived, sharp pains, enough of them that a pediatrician suspected child abuse; several months of headaches severe enough to cause me to miss school and take codeine. These were all before puberty and all resolved without treatment. With puberty came menstrual problems, agitation, insomnia, loss of appetite verging on anorexia and depression. These things came in a wave lasting several months then went away. The bouts of illness didn’t stop me from having a fun and full childhood and adolescence. In college, I had problems with my arms, tingling, numbness, neurological pain, bursitis. Again, these things happened for a a few months and went away on their own.
Treating Bartonella has been difficult. The herxes are ugly, especially the kidney pain and the headaches that are just as bad as they were in fourth grade. I started treating Bartonella every couple of days, then every other day. Then I knew I wanted to get past the initial phase of slowly lowering the load, so I increased my coiling time during each session then the frequency of my coiling sessions. As I learned what gave me herxes and what didn’t I modified the coiling protocol to concentrate on my central nervous system.
As I continue to coil, it seems that some of the worst parts of the herxes have gone away (e.g., kidney pain). I continue to have herxes, however. And something new is happening: I’m getting the old symptoms of Bartonella flares (e.g., tingling and numbness in my arms). It seems that by killing off the bacteria, I’m waking up the overall infection load and suffering from a flare.
This leads me back to what I’ve been seeing with other infections. The infection seems to “know” when its population falls below a certain point. Then it seems to change gear, more actively replicating and attempting to re-establish a critical mass in my body.
I have a friend with a PhD in immunology who lets me run my off-the-wall hypotheses by her. She isn’t an expert in Lyme Disease or any of the tick-borne illnesses. But she is up-to-date on the latest research in her field. Just as I was waxing on about how the Bartonella “knows” that it is losing ground, she told me that this phenomenon had been observed in pseudomonas infections. It is called quorum sensing.
In pseudomonas infections, which are sometimes the root of hospital-acquired infections and sometimes seen in immunosuppressed patients (e.g., AIDS patients), medical researchers have been able to observe that the bacteria emit biochemical markers that other cells in the same species (and sometimes other species) detect, and that when the chemicals reach a certain concentration, the genes expression in the bacteria changes. This results in different metabolic activities, such as increased or decreased reproduction, cyst formation or bio-film generation.
Quorum sensing has not been observed in tick-borne infections, not because it doesn’t occur, but because not enough research is done on tick-borne illnesses for this phenomenon to be a research priority. Who knows, it might be hard to detect and it might not lead to a change in the way the infections are treated. I doubt, however that it doesn’t occur at all.
For those who are using antibiotics, I have no comment about what to do with these ideas. But since I’ve been using a coil machine these past few years, I can tell that in order to get rid of the active infections, I need only coil infrequently at the beginning. This is good because the herxes are much worse when the infection load is high. Then as I stamp out the infection, it starts to reproduce more quickly and I have to coil more frequently to keep up. I am able to use my symptoms as a guide to how much and how often I need to coil. Ultimately, I need to coil frequently enough to kill each infection faster than it can grow back. I can tell when I reach that point because the symptoms start to go away until the infection is gone. Then it’s time to move on to the next infection.