As I prepare for what I hope will be the final show-down against Bartonella, I’ve actually stopped coiling for a bit. Or rather, I stopped to travel at the end of December, and since returning home, I haven’t started again yet.
I think about Bartonella a lot. I think about how long I’ve likely had it. I think about the symptoms over the years. I think about which antibiotics had any effect on it. I think about how ugly the herxes have been when I tried killing it with the coil machine every year for the past three years.
Now I’m formulating a plan, the first draft of which is included below, to make this year the year that I win.
A long and tedious history
As I’ve mentioned before on this blog, I was bitten by a tick when I was 2 1/2 years old. I think that’s when I got Bartonella. There is no way to test this theory. At best, there is supporting evidence, but the evidence won’t be complete until I get rid of the infection.
There were strange problems, ranging from sharp pains throughout my body the summer I was five (leading me to request band-aids, leading a doctor to evaluate me for physical abuse…but there was nothing under the band-aids), to a bout of neuropathy in my legs when I was in 6th grade. The latter was accompanied by changes in balance and perception, leading to extreme clumsiness, and a visible problem on x-ray of a disc out of place in my lower back. Although the list is much longer than this, and includes lots of strange kinds of suffering with no clear explanation, each of which resolved after long periods of time, I won’t go into it all. Suffice it to say that everyone thought I was either a hypochondriac or had some deep emotional problems that were being somaticized. Maybe both of those accompanied the very real problems that I associate with Bartonella flares, now that I know what Bartonella is and what symptoms the flares generate.
The only difference is that now that I am no longer a child with miraculous abilities to heal from things spontaneously and to suppress the chronic infections, I have to get rid of the infection if I don’t want to deal with frequent flares.
Pharmaceutical Treatment Recap
While being treated for a chronic Lyme infection, I had two tests in which I didn’t test negative for Bartonella. I didn’t have a clear positive result, I had an abnormal result. That’s why I had the second test. (More recently, the test came back negative for the first time, but somehow the symptoms aren’t gone…)
As a result, I took a long course of Levaquin. I did alright on it. I felt mildly better at first. But the symptoms came back even before I stopped the Levaquin. Later on, I took intravenous Rocephin for fourteen weeks. As intended, it helped with the Lyme infection, but more saliently and more effectively, it treated the Bartonella infection.
The Rocephin treatment helped alleviate, to a significant but not complete extent, the neurological problems I had in my legs. It improved my ability to walk, at least somewhat. I was no longer using a cane when I started the treatment, but my gait was precarious. My mother would walk next to me as I moved in slow motion, waiting to see if I might tip over so far that I couldn’t recover my balance. By then end of the treatment, I could walk a little farther, and walk unaccompanied. It was a huge improvement over what things were like before Rocephin, but I was nowhere close to “walking” by any standard definition.
I had crazy side effects with the Rocephin, side effects that weren’t associated with Lyme herxes. These confused my doctors (and me) and we didn’t know what to do to alleviate them. The regular herx detox protocols didn’t really help that much.
The symptoms that still stand out in my mind over four years later are: extreme headaches, severe kidney pain, insomnia that wakes me up multiple times during the night, and urinary hesitation even with an overfull bladder.
Back in 2012, after I had my first remission of Babesia, I was ready to move onto Bartonella. I thought it would be a piece of cake. I wasn’t just deluding myself. Two of the other people I’d spoken to about how they used their coil machines said: Lyme takes forever to get rid of and has hideous herxes, but Bartonella dies quickly and easily with a coil machine and will give you cancer if you don’t get rid of it.
That sounded easy enough. Coil for Bartonella the way I did for Babesia and within a few months, or a year at the longest, I would be free of the infection. I thought that. But that isn’t what happened.
Bartonella gave me trouble. It gave me night sweats and night heats. It woke me up a million times during the night. It gave me heart palpitations and made my heart problems worse. It gave me tension headaches and muscle tension in my neck, upper back, arms and hands. It gave me wrist troubles. It made the strange feelings in my legs come back. It made it harder to control my legs. It gave me all sorts of neuropathy, from unceasing tingling in my extremities, to short, sharp shooting pains. It stimulated my vagus nerve and made my menstrual cycles a nightmare. It made my menstrual cycle extend to 42 days at the worst. It made me crazy constipated. It made me bloated enough to look pregnant. It made my food sensitivities worse. It gave me diarrhea. It made my salivary glands swell a little and hurt a lot. It made my lower back hurt. It made my kidneys hurt enough to bring tears to my eyes. It made me have to pee all day some days and prevented me from peeing (urinary hesitation) other days. It made my liver hurt (pain I could under my ribcage). It gave me acnes on both sets of cheeks. It made my skin dry and itchy. Worst of all, it made me feel hopeless.
Hopeless is the wrong way to approach Bartonella. In fact, hopeless doesn’t really work with chronic infections or really with life in general. But when I’m herxing, it feels so real. So real. I’m usually shocked by what I thought when the toxins finally clear out and I can think straight again.
Basically, the Bartonella herx is like having every Bartonella flare of my life happen all at once and cranked up to maximum volume. I don’t look forward to it.
The thing with these symptoms is that after I’ve coiled for a few months, they clear up if I take a break. Or, at least I feel somewhat better. Not normal, but not as bad.
Over the three years of trying and stopping and trying again, I can coil for quite a long time each day without putting myself over the edge right away. I think I have reduced the infection load quite a bit.
These days, I’m having a flare. I have some of the symptoms. Not all of them and not too terrible, but I know Bartonella is active.
Chinese Medicine and Bartonella
As part of the plan (see the next section) I’m taking Chinese herbs from an herbalist and getting a few acupuncture treatments. The formula I’m taking gives me a mild herx: moderate kidney pain, constipation and acne. There are enough clues to suggest that it is killing the Bartonella, at least a little bit. To keep the kidney pain tolerable, I had to drink a lot of dandelion root tea.
I don’t think Chinese herbal formulas will get rid of Bartonella. In fact, the day after I stopped the first round of herbs, the constipation was gone and the Bartonella flare symptoms, including sleep disturbances and tingling in my arms, came back. At least I don’t have to worry that the herbal treatment suppresses the Bartonella infection.
The reason to take herbs for a short period of time is to rehabilitate my organs. They’ve been through too many rounds of antibiotics, too many instances of food sensitivities, too many years of chronic infections, and too many years of herxing. As I head back into battle, I’m trying to give them a month of support (more may be needed later) to be able to handle the next onslaught.
Bartonella Battle Plan
I’ve been trying to figure out how to be able to coil as much as I need to for as long as I need to, without suffering so much that I decide to stop again. Here’s what I have so far.
First, I’m treating this as though I’m coiling for the first time. I’ll use extra supplements and other things that help with herxes but might suppress the infection, especially at the beginning, to make it through. When the herxes become less intense, I’ll take away the supplements and herbs and go through the herxes again.
Second, I going through a period of preparation by taking the Chinese herbs to fortify the weaker parts of my body.
Third, I’m getting mild exercise. I’m walking most days. I’m starting to do stretches and yoga as I can manage. This should help with the muscle pain and tension. Hopefully it will also help with sleep.
Fourth, I’m watching my diet. I’m not on something strict, but I’m aiming for mostly cooking at home, lots of green vegetables, probiotic foods, and other foods that have helped in the past. I’ve got a bag of prunes, which have helped while taking the Chinese herbs. I’m hoping my diet can reduce the digestive discomfort.
Fifth, I’m drinking a lot. Water, water, water. Plus kombucha, dandelion tea, and if these aren’t enough, I’ll add in green juices. All these help with the kidney pain. If drinking doesn’t give me enough help, I’ll start taking hot baths that make me sweat. That was the best help in the past. Actually it was going to a sauna, but I’m no longer a member of the gym, so I’m opting for baths until further notice.
Finally, I’m going to modify my coiling program so that I go as fast as I can tolerate without overdoing it. If the herxes become too much, I’ll slow down on the coiling program until I handle them.
There are a few scheduled breaks in March and June. These will give me a chance to see the progress.
I don’t know what will happen or how fast I can get through to a cessation of symptoms. I believe it is possible. This time, I’m ready to keep going until I beat Bartonella.