I ramped up the coiling treatments last week and I knew I’d be down for the count. I was in denial about it, thinking I could still have energy to do other things. I’m more disabled than I’ve been for a while. That part is depressing. But I feel strong enough to handle the suffering. It’s been a rough week, but…I’m still standing.
There is something wonderful about the realization that even though my mornings (well, extending to mid afternoon) have been tough, I’m not nearly as crippled by the herx reactions as I was as recently as autumn. I attribute the change to several factors: I don’t have as many active infections, my body has gotten a lot stronger, my detoxification routes have cumulative benefits from repeated cleanses and my life is more inspiring these days.
Back before I even knew what the cause of my sudden, debilitating illness was, I took a few short courses of antibiotics and one of Traditional Chinese Medicine (herbs). I was incredibly sick to start out with, battling daily bouts of diarrhea. Then the herxes came and the diarrhea got worse. My already low blood pressure plummeted. My headaches were worse. I was weaker than I knew a body could be. I felt desperate for some improvement while at the same time I had the distinct impression I was being poisoned.
I didn’t know anything about detoxification. I could barely sit up. I was being shuffled from one doctor to another with no answers. Then for a few weeks, I felt a little better, before the symptoms came back. And I started all over again.
I had the worst herxes, which included nightsweats, insomnia, cognitive dysfunction, neurological pain and chest pain, when I took the Chinese herbs. I was pretty sure they were going to kill me. But a few weeks after I stopped, I felt a lot better. I started hobbling around again. I wanted to see people.
It all got cut short by a few delicious egg-laden pancakes, which was the first clue to the egg allergy. I tanked. I developed more neurological problems. I had my first bout of joint pain everywhere. Back then, however, I couldn’t tell the difference between a herx and an egg allergy. I just knew that everything I did made me feel worse.
When I next took antibiotics, they were an appropriate dose and length for treating Lyme Disease. I was very ill, and my body was very toxic at the time. I couldn’t really understand when I was herxing. Mostly, I would feel sicker each time I started a new antibiotic. I just felt sicker and sicker. Things seemed to get worse.
Rather than being able to tell the herx was over because symptoms diminished, I realized about 6 months into antibiotics that I wasn’t prostrate all the time. Rather, I had an hour a day where I could comfortably get up and move around the house. I had some attention for having visitors. Then I when I switched antibiotics, I felt sicker. Again.
The things that made it easier to see what was a herx and what was a symptom flare were: 1. realizing that instead of PMS, I had a symptom flare that culminated the first two days of my menstrual cycle, a few days after which I felt less miserable for a week to ten days. 2. After doing a lot of detoxing and changing my diet, I stopped having diarrhea all the time. Then when I changed antibiotics, it came back, indicating that I was herxing. Most of the time, the diarrhea stopped within a few weeks. I still felt bad in all the other ways.
Calling a herx a herx was tricky because the other symptoms of a herx reaction, like low blood pressure, headaches, feeling cold (chills), all over body aches, joint pain, heart palpitations and shortness of breath, were everyday symptoms of the various infections that were active in my body.
Looking back with the information I have now about what my Lyme, Babesia and Bartonella herxes have been like in the absence of antibiotics, I can see that some things I attributed to antibiotic side effects were also possibly herxes, for example, nausea, severe blinding headaches, insomnia, kidney pain, night sweats. These were sometimes part of the illnesses and sometimes part of the herxing.
Whether from herxing, antibiotic side effects or infections, I felt physically horrible every day while I was on antibiotics.
Coiling Herxes Phase 1
When I first started coiling, I had taken enough antibiotics that even though I was miserable much of each day, I wasn’t suffering all day long. That meant that I could tell if something happened acutely.
The first time I coiled, I had a reaction in my chest. It was scary. It felt like a heavy pressure. This happened again and again during the first few months.
Scary is actually the right word for how I experienced herx reactions. I didn’t know what was going to happened. The symptoms seemed strange. They happened in discrete ways at discrete times. Often, the obvious things would last an hour or a day or a few days. The symptoms that were less clearly herxes, like all over body pain or severe headaches, would usually last over a week at time.
Slowly and carefully, I kept track of what symptoms happened and when they happened. The more important thing at the time was that symptoms started to get less intense. Extreme all over body aches would calm down to a lower level of intensity. I would have hours at a time when I didn’t hurt everywhere. I sometimes had joint aches, but sometimes not. There were times when my wrists stopped hurting. Or it got easier to think of words when I was typing or writing. Then if I coiled again and the problems recurred, I knew it was part of the herx.
Coiling Herxes Phase 2
Once I mapped out what the symptom cascade was for each of the infections, I was able to use it to have some expectations of what would happened when I increased the amount I coiled for each infection. It was less scary, just knowing what to expect.
I learned that an average Lyme Herx lasted about two weeks to run through its cycle. I could expect a variety of symptoms from headaches to diarrhea to low blood pressure to chills to emotional swings to funny smelling urine, to occur in a particular order and less for a known range of time. When I started coiling more frequently, the series of symptoms would overlap on itself, with multiple sets of symptoms occurring at the same time.
I learned that Babesia herxes were faster. I felt them right away, especially the chest pressure and heart palpitations, and they went away after a few days. I knew that they would cause drenching night sweats, severe headaches (like migraines and sometimes actual migraines), light and sound sensitivity, immense fatigue that would make me need to lie down the whole day, nap and sleep eleven hours at night. It was helpful to know that the cycle was short (except sometimes the headaches were hard to get rid of) giving me confidence that my body could handle coiling daily, and eventually more than once per day. The other thing I learned about Babesia herxes was that if I coiled my blood stream more frequently, the herxes were not as severe. It is a principle I keep in mind for other fast growing microbes.
I learned that Bartonella herxes are extremely different from Lyme herxes. Yes there are headaches, but there is kidney pain, insomnia, restlessness, tingling in my limbs, constipation, abdominal bloating, spine pain, muscle contractions on the side of my face, and strange smelling urine and feces. This herx had some scary aspects to it, the kidney pain in particular. It seemed to last for weeks after a single coiling session. Yet I knew I needed to work towards coiling daily to keep on top of the bacterial reproductive cycle. This kind of herx would build up and get worse and worse, especially when I wasn’t doing all the necessary detoxification activities.
It was during this period of time that I became more confident in my coiling plan. When I wasn’t herxing, I had days or parts of days when I felt good. Not just better than miserable, but actually good. More importantly, these were the months and seasons when I knocked back the infections most significantly. My body was rebuilding itself, reclaiming its processes, rather than being hijacked by the needs of the infections.
Another aspect to understanding the herxes this way was that I knew when I stopped herxing. I continue to coil for each infection for three weeks past when it becomes dormant. Then I stop and wait for it to reactivate.
Coiling Herxes Today
For the recent few months, I’ve been focusing on Lyme and Bartonella. I’m continuing to learn about the herxes they cause. Partly, this is because it is only over the past week that I’ve hit the maximum I plan to coil for Bartonella on any given day. Partly, it comes from the fact that as the infection loads diminish, many of the physical symptoms are not as bad.
For Bartonella, this means that the kidney pain has gone down a lot. It is intermittent and no longer intense enough to make me scared. The headaches are fewer. I’ve gotten past the point that the herxes build on each other. Instead, by coiling frequently, I’m giving the bacteria less time to repopulate, so when I do the next round of killing, there are fewer bacteria to poison me. There is a change in the herxes. I’m getting more neurological and cognitive symptoms. I’m tingling and feeling vibrations (internally) in my limbs and on my face. (The sensation of vibrating lips, even when they aren’t moving at all, is totally bizarre!) I continue to have all the other symptoms of the Bartonella herx, but they don’t take as long to pass through my body.
For Lyme, the two biggest changes are the decrease in the length of the herx symptoms and the increase in emotional symptoms. The herxes seem to be cycling out of my body faster. I find I’m cold for two to six hours rather than all the time (as I was until a year into coiling) or for a week at a time. I’m exhausted and need to sleep and rest for a night and half a day. Then I’m done until the next time I coil. I no longer get diarrhea, let alone for a week at a time. Instead I have urgent bowel movements for a day. (Then I’m back to the Bartonella constipation!) The only thing that is really sticking is the joint pain. I hope this is because I’m killing off a lot of bacteria! Anyway, the rapid cycling means that it is easier to get through the herxes because I know they’ll be over soon. But when I ache all over, I still ache all over, and it sucks. The emotional symptoms, which are basically out of control emotions that are only tangentially related to the present, last for several hours and make me lose perspective on my life. Then it’s over and I wonder what all the drama was about.
I guess the conclusion is that the herxes are cycling through faster. This makes for lots of suffering in short bursts. I consider this a huge improvement. I’m glad to be able to coil more aggressively to get rid of the infections sooner.