For the past two weeks, I’ve been playing a learn-to-speak-Spanish cd in the car when I drive. With each full repetition of the cd, I can hear and understand additional phrases. They didn’t help when my friends mother came to dinner because I didn’t ask to book a room in her hotel, but that’s beside the point. Having gone through the same experience over and over, I recognize more details and have a better understanding of what is happening on the cd.
I recently had a similar realization about brain fog. I used to say I never really got brain fog, and that I didn’t quite know what it was. I understood what people described, but I was pretty sure I’d never had the experience. What I called my own symptom was fatigue, the kind of fatigue that makes it difficult to concentrate. Now, having experienced it countless times, I can say that I sometimes get brain fog.
What is brain fog actually like? I have no patience to talk to people. I can’t get into movies or books. I don’t want to write or play with the cats. Unless I’m knitting something very simple and repetitious, I’m don’t feel like knitting either. I might want to color, but even that can be tricky. The hours tend to pass quickly while my brain is on hibernate mode. Whatever I do happens in slow motion. I almost don’t notice it because I have reduced awareness of my surroundings. As it starts to lift, I get very tired and very anxious about all the things I’ve been meaning to do but haven’t done. Then I come up with a whole new set of things I want to do. I drive myself nuts. The good thing is that the anxiety eventually passes, and in a calmer more alert state, I get back to “normal.”
Herxes, Flares, Side Effects, Relapses and Detoxing
During a recent bout of brain fog, someone wrote to me to ask what the difference is between a side effect and a herx, and what on earth a flare is. It took me days to be able to compose the thoughts. Having done so, I thought I’d share them here.
A herx reaction (or Jarisch-Herxheimer Reaction) is when bacteria die in a person’s body and the result is that the person is poisoned by the bacteria, their contents, or chemicals they make as they die.
Herxes tend to cause some generalized problems, such as reduced blood pressure, tachychardia, diarrhea, fatigue, headaches, etc. In the case of Bartonella, they also give some people (including me) kidney pain as the toxins exit through the kidneys or acne as they exist through the skin. Herxes also cause a second set of problems: exacerbating existing symptoms. The symptoms, especially in places with low blood flow, are caused by bacteria that are harbored in those areas. When they die, they poison the localized site. People often feel worse, like their existing symptoms are going crazy when they have a herx reaction.
Lyme herxes include increases in joint pain, headaches, cognitive problems, digestive distress, temperature dysregulation, and localized symptoms, as well as the need to sleep as much 12 hours a day. Babesia herxes can include night sweats, migraines, light and sound sensitivity, drops in blood pressure, heart palpitations, and nausea, all symptoms that can come with Babesia, magnified by the death of the microbes that cause it. Bartonella herxes can include increased intensity and frequency of peripheral neuropathy, insomnia, constipation, brain fog, extreme fatigue, ringing in the ears, pain in the ear canals, and other symptoms that the infection itself causes.
With antibiotics plus detoxing, the herx symptoms usually calm down within two weeks. One of the ways to tell something is a herx is that it gets worse, then begins to improve within two weeks. When it gets worse and stays worse, or gets increasingly worse, pay attention to possible antibiotic side effects. With coiling plus detoxing, the symptoms can linger much longer. This is because antibiotics put the surviving bacteria into a dormant state, so once the initial die-off is over, the herx passes as soon as the body can clear out the toxins (at least until the bacteria cycle back to being active). With coiling, the bacteria remain active, so with each subsequent coiling session, additional bacteria die, and the active ones may become more active if they sense that their population has decreased within the host body. Thus, herxes may go on and on for months, even with detoxing, but diminish over time.
Detoxing is the set of treatments we do to help our bodies clear out toxins that build up from the infections or from herxing. Successful detoxification treatments reduce the symptoms caused by bacteria-death poisoning. The main routes for these toxins to get out are the liver/feces, kidneys/urine, and lymph/sweat.
The first route is through bile, which binds to toxins in the blood stream and is excreted by the gall bladder into the intestines. The large intestines reabsorb bile on its way out to reuse the bile to pick up other toxins. However, if the bile already contains toxins, those toxins get recirculated in the blood stream. When not much bile is reabsorbed, the liver makes more. Several treatments that bind bile, such as cholestyramine, bentonite clay, psyllium husks and welchol, help speed the detox process by preventing bile from being reabsorbed in the large intestines. (Except for psyllium husks, they all can cause constipation, which helps when Lyme herxes cause diarrhea.) Most of the Lyme toxins come out either through bile or through sweat.
The second route is through urine. Pretty straight forward. Drinking lots of water, water with lemon juice, juiced greens, and certain herbal teas that are specifically for kidney detoxing, such as dandelion root, all help get the toxins out faster. Other herbs that have helped me with kidney detoxing include chanka piedra and milk thistle. Bartonella toxins seem to come out either through urine or sweat.
The third route is sweat. This is also pretty straightforward. Getting hot, in a sauna or a bath, helps to sweat out the toxins in lymph fluid and blood. The trick is that skin reabsorbs sweat or the contents of sweat while pores are open. My doctor used to tell me to limit sauna and bath time to 15 minutes (20 minutes absolute maximum), then rinse off immediately. It also helps to do things to assist in moving lymph within the lymphatic system through exercising or skin brushing. These move the fluid out of the lymph nodes and channels and into the blood stream, allowing the body to get the toxins out through urine or feces, as described above.
There are places in your body that are hard to detoxify because they don’t get a lot of blood flow, places such as joints, eyes, ears, the central nervous system and the radial nerves. The best you can do is to make sure you’re doing lots of detoxing and getting lots of blood flow. Heating the body through saunas or baths is one way to do this. For those who can, exercise is also a good option.
Side effects from many of the stronger antibiotics include overlapping symptoms with herx symptoms. I used to have mild brain fog, then I took minocycline, which crosses the blood brain barrier, and I suddenly couldn’t type anymore. I kept taking it, thinking it was causing a herx, but my doctor had a fit when I saw him. He said it was more likely a side effect of the minocycline. Oops. (I had to relearn how to touch type, a skill I’d had for more than 20 years when all this happened.) Often, the symptoms of herxes and side effects can overlap. When I wasn’t sure, it was always the right thing to contact my doctor and stop the antibiotics until we spoke. If the problem wasn’t the drugs, I could restart them, but if the problem was the drugs, there was no reason to increase the damage they were causing with each subsequent dose.
Relapses happen when we manage to put one of the infections into a dormant state (usually through heavy doses of antibiotics, food restrictions, and supplements that increase our immune function) and then it wakes up again. It can wake up slowly, with symptom creep: you know something is off but can’t tell exactly what, then the symptoms start to get more noticeable and specific. Or it can wake up quickly, which is often called a flare.
A flare is a sudden increase in symptoms from an infection. Flares seem to happen seasonally, after physical stressors (like an sleep deprivation, overexertion, or a food sensitivity reaction), after big emotional stressors, and when we stop or change the ways we are propping up our immune system (different or lower dose antibiotics, different or fewer supplements, etc.). Flares can go from no symptoms to lots of symptoms in an hour or from a few symptoms to a lot of very intense symptoms over the course of a few days.
Bartonella and Self-Care
Over the past few weeks, I’ve been coiling like crazy for Bartonella. Most days, I coil my central nervous system plus my shoulders three time a day. The herx has been building up. Part of the herx is psychological: I feel like something is very wrong. I can’t put my finger on it most of the time. But I feel bad, and I’m sure there must be something else bothering me. Going through it again this time, on the umpteenth repeat, I can finally see why I always find a reason to try coiling for something else. Repetition allows me to see the phenomenon a little clearer each time I experience it.
The herx is a remix of the previous Bartonella herxes: kidney pain, peripheral neuropathy (tingling in arms, hands, and feet, as well as shooting pains down the outside of my legs), heart palpitations, chest pain that goes up the left side of my neck/throat, urinary hesitation, constipation, pain in my spine and paraspinal muscles, tension headaches, acne, insomnia and fatigue.
Since I’ve come to understand a lot more about Bartonella, things that don’t always align with what I’ve read about the infection, I’m more focused on how to get rid of the infection in my spine and radial nerve tissue. Not only do I need to kill it with coiling, but I’m trying to figure out how to clear the die-off toxins from my body as quickly as possible because I’m tired of suffering, but also because the bacteria are dying in places that are hard to detoxify. If it worked, I’d take a few pills, drink some tea to clear out my kidneys, and add in some fiber to keep the colon moving.
It isn’t that simple. I’ve been trying those detox protocols for the past few weeks, and I’m coming again to the conclusion that I need to heat my body to bring blood flow to my spine and increase the amount I’m sweating. I finally dunked myself in a hot bath today. I’m not ready to sign up for a gym again just to go to the sauna. The tub is fast and easy. I started out today with a less than optimally hot bath just to convince myself to get in. However, I expect to get in three times a week, for a hotter 15 minute sea salt and epsom salt bath. In the past, this has helped tremendously with kidney pain from Bartonella herxes.
The next thing I started this morning was a few minutes of yoga, concentrating on releasing and strengthening my back muscles. That helped a little. I know that more than five minutes of yoga is better for me, but I just couldn’t convince myself to keep going. I wanted to go for a walk instead, which I did.
This whole healing process, especially when it comes to treating the seemingly never ending Bartonella infection, goes in cycles. I make the most progress when I coil a lot and devote a lot of time to physical care, like hot baths (or sauna time) and exercise. I resist because I’d like to go back to having more productive time in the day, and these activities add up. With exercise, I then need to make time for a nap. Healing from chronic infections, especially this one, is a full-time job. Quitting this job just prolongs the number of days and months I have to do it or allows for a relapse.
Last winter, I took a Chinese herbal formula that helped my kidneys a lot. I didn’t have kidney pain when I coiled for Bartonella. I wasn’t sure if the formula cleared and protected my kidneys or put the Bartonella into a dormant state (or maybe killed it off). I’m still not 100% certain. What I do know is that I didn’t coil much for Bartonella over the summer and I got hit with a major relapse this autumn. I didn’t recognize what it was for two and a half months because brain fog and extreme fatigue got in the way of thinking. But now that I know, I feel like it is such a setback and that I’m back where I was this time last year, no progress at all.
The best I can do is take care of myself, be kind to myself, and rededicate myself to battling Bartonella.