I spent the last week or two worrying. First, I was worried that I wasn’t getting all the Bartonella symptoms I’d been expecting. I started to wonder if my new protocol wasn’t working. Then I had a crazy pain in my chest that wouldn’t go away. It was different from my usual chest pain. I went to see a cardiologist because I was so worried. Finally, there was the usual worry, that I’ll feel sick forever, and that each time I feel better for a while, I’ll have to deal with being disabled again for another extended period of time.
To try to get my head around everything, I learned what I could about dysautonomia, which I wrote about last week. I didn’t have the energy to really write about what I was dealing with. I needed to stop worrying a bit first.
Yesterday, everything fell into place. I’m starting to get more Bartonella symptoms. The treatment for my chest pain has finally reduced the amount of pain I’m in. And I’m getting the chest tightness and out-of-breath feeling that I’m more familiar with. The chest problems, between pain and difficulty breathing, have curtailed my activities again. But I now have the perspective that this is still not as bad as it used to be…and that the worry is a milder version of the hopelessness that Bartonella usually brings on.
Heart Part 1: Heartache
Last week I had chest pain. It started on Sunday, February 15, right after a sundae in celebration of Valentine’s Day. My husband and I were celebrating because usually one of us (me) gets really depressed around the holiday. I’ve had enough bad things happen on or related to V-day to fill three feature length films. Even now, when all the nonsense is over (it’s a good thing high school only lasts 4 years and that our 20s end by the time we turn 30), I still got a dose of the blues every year until this one. So we celebrated. We walked around in Monterey. We joked and laughed and enjoyed hot fudge sundaes at Ghirardelli’s and read obnoxious refrigerator magnets at one of the stores selling tourist tchotchkes.
On the way home, I started to feel a dull ache in my chest. It crept up into the left side of my neck. This by itself was unremarkable. It’s been happening on and off for months now. I took note because it was distracting, but tried to ignore it.
The first problem was that it didn’t go away when I went to sleep. When I woke up for one of my moonlight trips to the toilet, the pain was still there and as noticeable as the full bladder.
The pain didn’t go away the next day. Or the next. I could still mostly do what I normally do, including going for a long walk. But I got really tired. Really tired. The kind of tired a two-year old gets: can’t settle down, super-cranky, TIRED. In addition to super-cranky, I started to worry. The pain had gotten more intense between Sunday and Tuesday. It was harder to ignore. I decided to go to a cardiologist.
On Wednesday afternoon, I had a squeezed-in, last minute appointment. My blood pressure was low, 90/62 mmHg. That was a little hint that something’s up (a common herx symptom). My blood pressure used to always be that low, except when it was lower. But over the past few years, it had begun to vary in the upwards direction. I used to joke that at 110/70 mmHg I was downright hypertensive. But, of course, when my blood pressure goes up a little, my heart problems settle down and my energy level is much better.
The cardiologist listened to my heart. It demonstrated the murmur I’ve known about since 2007 and the special click that I had in 2001, went away and came back to stay since 2007. The click is loud, a tricuspid valve prolapse that doesn’t necessarily cause big problems (but might be the source of the intermittent sensation I get in the left side of my neck). The doctor asked me to talk about the pain. I told him it was a dull ache on the left side of my chest that crept up into my neck. With more specific questions, I was able to explain that it is no worse walking than standing, but that standing is worse than sitting, and that lying down is almost as bad as standing. Then he asked me to lean forward in my chair. The pain went away. Like it was never there to begin with.
He ordered an echocardiogram for Friday and asked me to start taking ibuprofen. The ibuprofen is an anti-inflammatory drug to treat probable pericarditis.
The echocardiogram showed a mostly normal heart. There was no fluid between my pericardium and my heart, which is good, but it didn’t rule out inflammation of the pericardium. The other item of note was that my mitral valve was “floppy” without quite causing a prolapse. The doctor said it was a borderline prolapse, but that he hadn’t really seen quite such a floppy valve before. When I looked at the screen, I thought floppy was a perfect descriptor of how the valve was flapping around.
Which brings me back to taking ibuprofen a few times a day for the next 2-3 weeks. Pericarditis is not necessarily very serious, and it usually goes away with ibuprofen. The key is to rest and not stress my heart too much. The interesting thing is that it is usually idiopathic, meaning the underlying cause is not known, but it is associated with systemic inflammatory diseases. The usual examples are Lupus and rheumatoid arthritis. I can imagine that the fictional “post-Lyme syndrome” with its chronic, systemic inflammation might also fall into a similar category.
Anyway, I think that this new problem might be from either treating the Bartonella again, or from the fact that I have had these infections for so long, untreated, undertreated (with antibiotics) and now more effectively treated without any suppression of the active microbes. In other words, my body has had inflammation of one sort or another for at least 14 years. It isn’t a surprise that my heart has suffered collateral damage.
What I hope, however, is that whatever is happening in my heart right now doesn’t cause permanent damage or problems that persist long after the infections stop being active. My expectation, notwithstanding permanent damage, is that when there is no more active Bartonella in my body, or at least my autonomic nervous system, the heart problems will vanish.
My thinking about Bartonella has continued to evolve. After writing the last post, I’m wondering why I use the coil for five minutes on each of my major organs. I guess it’s because I came up with my rule of thumb that five minutes is what I needed for Lyme to get a maximum herx or that in five minutes, most of the blood supply will pass through the heart, spleen or liver. I’ve been reluctant to reduce the amount of time I coil for Bartonella on these parts primarily because I have “five minutes” stuck in my head.
In the last post, I concluded that the majority of the Bartonella infection is likely in my central nervous system. I have no evidence that it isn’t also in my peripheral nervous system (or maybe I have evidence that it might be in my peripheral nervous system in the form of the pager that likes to go off inside my left calf, vibrating for no reason). Still, for my limbs, I’m content to coil for only 1 minute a day in each location.
So, I’m trying to reformulate my coiling protocol to reduce the time on my major organs to 3 minutes each and add the newly available minutes to my head and spine. Once I have a new plan, I’ll post it here.
Meanwhile, the protocol I’m using is bringing me back to familiar territory. I’m starting to have typical Bartonella herx symptoms: headaches; emotional upset; pain and stiffness in my shoulders, arms and wrists; constipation; kidney pain (though it only lasts for a few hours and not every morning); spine pain; tingling in my arms; waking up a lot during the night; chills and excessive sweating during the day; urinary hesitation; lower abdominal pain; and tiredness. So I know I’m on the right track. I also know that I can probably shift the coiling around and still be able to handle a bigger herx if I need to.
So the other thing I did last week was to finish off the Lyme flare for this season. The way I tackled Lyme this time around was to coil every 3-4 days for about 3 weeks, starting with the last week in January. The goal was to let it keep waking up, which it is going to do anyway for a few weeks, coil enough to not succumb to the worst symptoms, but not waste my time coiling a lot knowing that the infection was still activating itself in dribs and drabs.
While I was doing all that, I was achier than usual. I had more random pains than usual. I felt more joint pain and popping. Then it stopped getting worse. So I switched gears.
Last week I coiled my central nervous system (and my heart because I was worried about my heart) for five minutes on each spot every day from Tuesday to Sunday. Most days, I was also coiling for Bartonella. But on Wednesday and Sunday, I took a break from Bartonella, and did a full Lyme protocol on each of those days.
My overall pain level has gone down, or at least it has concentrated into my heart and my arms, which I think both come from Bartonella. I’m not sleeping crazy long hours anymore. Nine hours is fine. The ten I needed during the flare now feels like too much.
The plan until the next seasonal flare (August), or until something else triggers the Lyme infection, is to coil once a week for the next three months, then stop altogether.
Heart Part 2: Old Symptoms Die Hard
A herx is a herx is a herx.
(As a woman named Rose, I feel free to modify Gertrude Stein’s oft-quoted phrase.)
Herxes from each of the infections I’ve treated have had some characteristic symptoms that define them as different from the herxes of the other infections. A few examples include the gas that comes with Candida herxes, the drenching night sweats of Babesia herxes, the kidney pain of Bartonella, and the endless sleeping of Lyme herxes. These aren’t the worst symptoms, per se, but they are defining symptoms that don’t appear when coiling for other infections.
Then there are certain symptoms that occur with multiple, if not all infections: reduced blood pressure, which leads to palpitations and a squeezing feeling in my chest, headaches, fatigue, changes in appetite, and feeling generally under the weather.
There are a few body parts that always seem to get thrown off by herxes, my intestines go too slow or too fast, my liver hurts, my kidneys generate strange-smelling urine. It makes sense because these are the organs most responsible for getting the by microbial die-off toxins out of my body.
I have a few body parts that seem affected by multiple infections, particularly my legs, which I think have been attacked by both Bartonella and Lyme, and caused the tremendous difficulty I had in standing and moving my legs from 2007 to 2010. My shoulders, arms, wrists, hands and jaws also seem to be affected by both infections. Even as the all-over popping and creaking of Lyme has died down, I’m having trouble with my left shoulder sounding like a popcorn maker and my left jaw giving a resonant crack every few hours. My hands and wrists are hurting. I think it is all neurologically derived because the muscles around these areas are pretty tight (neck and shoulder) or excessively loose (wrists). I have pain that travels down the nerve bundles in both arms.
In all this, there is a sorting process, in which I can see that although the symptoms overlap, they have some distinct characteristics.
Back to my heart, I have the same feeling of chest constriction I had when I tried using the coil machine for the first time back in 2011. Fifteen or thirty seconds on any of the frequencies for the tick-borne diseases I have was enough to trigger it. I’m also feeling out of breath with the mildest exertion (walking around the kitchen preparing breakfast for example). So I’m back to resting. Trying not to stress my heart. Unable to exercise for a few days or a few weeks. I’m in familiar territory.