Coiling for Lyme

Trying to cure one case of Lyme Disease


I had a major breakthrough in my understanding of Bartonella a few nights ago. I was talking to someone about my newest issue: chest pain. The person had some medical training and thought that I should look up autonomic nerve dysfunction.

I’ve looked up things about the vagus nerve before, since I’ve observed that Bartonella flares and herxes tend to (over)stimulate my vagus nerve. (Surviving Vagus) I just hadn’t thought about autonomic nerve dysfunction in a long time, not since it was give as the explanation for the postural hypotension (or postural orthostatic tachycardia syndrome, POTS) I was suffering from in 2007. I still had to deal with extremely low blood pressure and the problems it caused up until I had been coiling for almost a year. But I stopped worrying about it shortly after I stopped taking fludrocortisone (Florinef). In any case, dysautonomia dropped off my radar.

The thing is, the vagus nerve problem is not really a separate issue, though I tend to think of it as one. So I looked up autonomic nerve dysfunction, also known as dysautonomia, and autonomic neuropathy,  in a medical textbook. It blew my mind. For the first time, I saw a whole list of  the problems I get with Bartonella as exactly ONE problem. It was such a relief. It doesn’t explain everything, but taken together, it explains what I was dealing with before I started coiling, as well as whenever I coil for Bartonella.

Dysautonomia Symptoms

First, here is a summary from the Mayo Clinic, along with my notes about how these same symptoms affected me and have been associated with Bartonella flares.

  • Dizziness and fainting upon standing caused by a drop in blood pressure.
    I’ve fainted a few times. In the years between when I got sick and when I’d been coiling for a year, dizziness and lightheadedness were majorly debilitating problems. When I took a tilt-table test, I got a very positive result very quickly. I was diagnosed with POTS. Florinef helped, but it wasn’t a perfect solution. I got dizzy and felt faint (even whited-out without losing consciousness), even before I realized I had a big problem, whenever I menstruated. It was as though either the cramps or the change in hormones triggered syncope symptoms.
  • Urinary problems, including difficulty starting urination, urinary incontinence and an inability to completely empty your bladder, which can lead to urinary tract infections.
    For me, the worst thing ever was sitting on the toilet with a full bladder, unable to start the flow of urine. It was enough to make me cry. I would sit and  wait and wait and push and relax and take deep breaths to calm down. Then, just as I was about to give up, the flow would start. I called it urinary hesitation when I wrote about it on this blog. The first time I had serious trouble with it was when I was taking Rocephin. I’ve also had urinary hesitation during all previous attempts at aggressively coiling for Bartonella. This time around, I’ve only had it once. (Knock on wood.)
    I haven’t quite had urinary incontinence, but the flip side of urinary hesitation, urinary urgency, is something I’ve also had to deal with. I have to go often, and with no warning, I’m running to a toilet. This happens most when I’m coiling for Bartonella, but also happens even when I’m not. It is one of the symptoms that predates being disabled by the tick-borne infections.
  • Sexual difficulties, including problems achieving or maintaining an erection (erectile dysfunction) or ejaculation problems in men, and vaginal dryness and difficulties with arousal and orgasm in women.
    Let’s just say that for the five years I was stuck in my apartment in NYC, I wasn’t interested in sex. It was really after the Rocephin had knocked back the first layer of Bartonella infection that I remembered what my libido was. Even now, when other body systems go haywire as described on this page, sex is not nearly as fun as when I’m feeling well.
  • Difficulty digesting food, due to abnormal digestive function and slow emptying of the stomach (gastroparesis). This can cause a feeling of fullness after eating little, loss of appetite, diarrhea, constipation, abdominal bloating, nausea, vomiting, difficulty swallowing and heartburn.
    Yes. That about describes what I’ve gone through over the past 8 years. I always assumed that it was from the food sensitivities because when I got them under control, the symptoms were less intense and even disappeared at times. Now I look back and suspect I removed some of the triggers for all the digestive problems, but not the problems themselves.
    I remember having diarrhea and looking pregnant for 18 months. I still get intermittent bloating that gets worse with Bartonella treatment. Before that and since, I’ve suffered from constipation, which tends to get worse when I coil for Bartonella or have other symptoms on this list. I’ve also had other symptoms on the list: feeling full after two bites of food, not wanting to eat for days and days (and having to force myself to eat something), nausea (usually with low blood pressure), vomiting (usually when everything goes crazy at the beginning of my menstrual cycle), feeling like there is something stuck in my throat before I eat then feeling like I’m choking my food down, and heartburn with reflux when I already feel bad with everything else.
  • Sweating abnormalities, such as excessive or decreased sweating, which affects the ability to regulate body temperature.
    Temperature regulation is one of my biggest issues. Sometimes it is cold hands and feet, but what really gets me is when my hands aren’t cold, but I get really chilled. On the flip side, I get hot in my sleep. Sometimes I sweat and sometimes I wake up overheated and dry. Then there are days when I suddenly get sweaty without getting hot, just sitting around reading. I often feel like my thermostat is broken.
  • Sluggish pupil reaction, making it difficult to adjust from light to dark and causing problems with driving at night.
    My very first argument with my husband was about turning off the lights at night. We were both getting used to living with another person after living alone for a long time. He turned off all the downstairs lights then turned on a light when he gets to the stairs. I couldn’t handle the dark/light/dark/light alternation. It made my eyes hurt. For a long time, I had to ride in the car with my eyes closed at night because my eyes couldn’t adjust between the dark environment and the headlights in the other direction. Sometimes it provoked eye pain, sometimes headaches. This symptom also seems to come and go with Bartonella coiling, and has gets less intense overall when Babesia is under control.
  • Exercise intolerance, which may occur if your heart rate remains unchanged instead of appropriately increasing and decreasing in response to your activity level.
    Last year, I tried several times to start exercise programs. I found I needed more than a few days to recover from even moderate exercise. That’s what made me thing I had some other infection that I hadn’t discovered yet. I suffered from palpitations, from not sweating or sweating too much for the amount of exertion. Sometimes I needed weeks to really get back on my feet. It was crazy. Exercise also triggered mild to moderate chest pain that was relieved with lying down. So I kept wondering what I was missing. I didn’t realize that it was part of the package I was already aware of.

Just these symptoms are enough to explain a lot. Most of these issues are ones that I’ve written about on the blog before. There are a whole other set of strange symptoms that I get that I haven’t deemed blog worthy in the past. But these, too, showed up in the list of dysautonomia symptoms in the medical text book, Current Medical Diagnosis & Treatment 2012, edited by McPhee, Papadakis and Rabow.

When I read the text book, I realized that I’m not having a multisystem breakdown from Bartonella, with the infection directly affecting my kidneys, my bladder, my intestines, my esophagus, my stomach, my temperature regulation, my heart, my blood pressure, my eyes and my abdomen. In addition to the list above, the text book lists:

  • Persistent tachycardia without other cause.
    For me this has presented as palpitations. I’ve also had racing heartbeats in response to mild exertion (walking, going up 3 or 4 steps), that then didn’t get slower for more than 30 minutes. I haven’t had that happen in a year or two, not since the first round of coiling aggressively for Bartonella.
  • Facial flushing.
    This used to happen a lot for no emotional reason. I would just get really hot and red in my face and neck. Sometimes I was alone in my apartment, sometimes I was with people. It would take a while for my face to return to normal. This symptom, in particular, had my acupuncturist asking if I was getting hot flashes and other signs of menopause.
  • Postprandial hypotension and other abnormalities of blood pressure regulation.
    Postprandial means “after a meal.” For many years, my blood pressure would drop after I ate and I would get nauseated and light-headed. This was the symptom that Florinef helped most with. Other odd things were that while I engaged in any kind of exertion, my blood pressure would drop instead of increasing. It made me feel horrible.
  • Natriuresis and diuresis that occur during recumbancy.
    This last one is the symptom that I never bothered to write about. Natriuresis is the excretion of sodium in urine via the kidneys. Diuresis is urine production or sometimes, excessive urine production. Reading about this made me laugh to myself. When I start working on Bartonella, or when it’s been too long and the Bartonella symptoms are getting worse from lack of treatment, I have to urinate every time I coil, which I do lying down. When I’m using three coils, I have to go to the bathroom three times. I was always trying to figure out which frequencies made me have to go, and I concluded: all of them, sometimes for days and weeks, then not at all. I couldn’t find the correlation. Now I know it has to do with my supine position and whether the Bartonella is causing disautonomia at the time. The other time I notice this is when I take a nap or go to the bed for the night. No matter what kind of fluid restriction I attempt, I have to get back up and urinate between 10 and 30 minutes after I lie down. Reading about this in the medical text book made me feel less crazy and less worried that I had somehow permanently damaged my kidneys.

The question left hanging is why did I get so much better after I killed off the active Babesia? Why did the dysautonomia symptoms, especially the low blood pressure, improve so much, if all this comes from a Bartonella infection of my nervous system?

The best way I can explain what I think is to say that Babesia was a stressor, a trigger of sorts, that kept my blood pressure down and made it difficult to breathe. Once my blood pressure was too low, it kept triggering the rest of the symptoms of dysautonomia. Babesia may have had other effects that also triggered my nervous system, ones that I may never fully understand or be able to explore as a layperson observing the infections. But I suspect that it amplified the problems caused by Bartonella. I think that the Lyme infection similarly had an amplifying effect on the Bartonella infection.

The good news is that many of these symptoms have diminished in intensity and frequency as I  have made progress against Bartonella over the last three years.

Bartonella: An Infection of the Nervous System

When I’ve read mainstream medical literature about Bartonella henselae, the chronic form only seems to appear in HIV+ individuals. Otherwise, it seems to be an acute problem which can be severe and can relapse a few times, but is easily treated and often self-limiting (meaning it will go away without treatment). It seems to affect the lymphatic system, the heart (endocarditis), the blood (bacteremia and bacillary angiomatosis) and rarely, the brain (encephalitis).

This doesn’t seem to be the illness I have. Dr. Burrascano talks about a Bartonella-like organism, in his pamphlet, Advanced Topics in Lyme Disease, as a disease that affects the lymphatic system, the digestive system, the central nervous system (CNS), and the skin. This is closer to what I’ve experienced, but not quite.

For me, there has been CNS involvement, as indicated by the cognitive symptoms (brain fog, forgetting words, difficulty typing), psychological symptoms (depression, mood swings, emotional outbursts), and, now that I know more about it, what I can now recognize as dysautonomia (with all the symptoms listed above). There are other clues that the CNS has been involved, from whole body twitches to insomnia. But it doesn’t end there, because I think some of my peripheral nervous system has been affected, particularly my vagus nerve, to include nerve pain and other sensations in my arms, legs, neck, shoulder and head; and my my ocular (problems focusing, floaters and light sensititvity) and vestibulocochlear nerves (ringing in my ears, sound sensitivity, problems with balance and dizziness).

Many of my other symptoms, such as digestive, cardiac, and urinary tract, seem to go back to the nervous system, rather than being attacked by the infection directly in addition to the problems generated by the infection of my nervous system.

There are some symptoms, such as joint and muscle pain which may be directly from Bartonella, or my also be mediated by the peripheral neuropathy, causing muscle spasms or tightness, muscle weakness, and in the first few years of my battle with tick-borne illnesses, reduced control of my lower body (which prevented me from walking). I’m not so sure what to say about the joint problems, because they sometimes appear when the Lyme infection seems otherwise dormant and I’m actively treating Bartonella. It could be that both infections are producing similar symptoms.

There is one more thing left in all this which I don’t think has a direct connection to the nerve infection: kidney pain. This is the one symptom I get from killing Bartonella that is less intense or completely absent when no die-off is occurring. I suspect that the Bartonella bacteria emits a variety of toxins, especially when it is dies, that are processed in the kidneys (and possibly the liver). It is those toxins that generate kidney pain, I think. I can’t test this hypothesis, but it fits my observations thus far.

For now, I’m continuing the same coiling plan I shared in the most recent post. I spend a lot of my daily coiling time on my head and spine, as the key locations where I will find the infection.


Categories: healing process

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