It’s been a rough week. Yet again. This is the hard part, I remind myself, but not the hardest part. I’ve already made it through the hardest part back before I had a diagnosis or a way past this illness. Now is hard because I want to do the things I could do last month instead of suffering through a Bartonella flare.
There are a few things going on. First, I’m still dealing with foot pain, although it has moved. The initial problem with my left ankle has been resolved. Next came pain in my heels, though it took me much of Wednesday to realize there had been a shift. Along with the heel pain came pain in my calf muscles. Eventually I diagnosed this as Bartonella. (Thanks, Matt!) Along with the Bartonella in my legs, I’ve had more and more symptoms, including fatigue, headaches, and joint pain in my arms and hands. Then I had one of those comical moments when I sneezed and knocked one of my ribs out of place. That hurts! A lot! And it takes a few days to really go away. Finally, I’m waiting for my menstrual cycle to start. It has really taken forever this time. Well, not forever, but long enough that I’m starting to wonder if the extra symptoms are exacerbated by hormone disturbances. More on that later.
Spot Coiling: Lyme
When I first got my coil machine, I tried using the coil to go after pain in my joints: hands and wrists, elbows, hips, ankles, and knees. After a few days, I decided it was pointless. The more important thing to do was to cut down on the infection load because within a few hours, the pain was back. The infections aren’t “stored” in my limbs, but they are active there in a way that causes symptoms (pain, stiffness, etc.). So the areas need to be coiled as a part of getting rid of the infections, rather than as a short cut to relieve symptoms.
Needless to day, two and a half years later, I tried spot coiling again, as in coiling the spot that hurts. It actually worked quite well on my left ankle. The ankle that had gotten inflamed when I ate food that sets off my joints didn’t seem to be getting better on its own. I even decided to use ibuprofen to get the swelling down. It reduced the pain, except when I walked on my foot. I figured I might as well do a Lyme coiling, just in case that was the problem. I coiled my whole body as usual, three minutes on each location. But the pain didn’t go away until I coiled my ankle. It isn’t exactly spot coiling, but coiling the spot did the trick as part of a full coiling protocol.
With my ankle feeling better, I went for a long walk to loosen up my feet and limped around the neighborhood. It was Wednesday evening. My heels were killing me. My calves were killing me. I couldn’t figure out what the deal was. My first instinct was to assume that being rolfed the day before shook loose microbes from one of the infections. Maybe Lyme. Maybe Bartonella. I wasn’t sure, but muscle pain specific to one or a few parts of my body has happened on previous occasions when I’ve had a massage or a rolfing treatment.
The thing was, it didn’t go away after a day or two. What the heck?
Then I remembered that I’ve had this problem before. A long time ago. It was when I was taking an antibiotic that in rare cases can cause rupturing of the Achilles tendon. Which one was that?
I ended up having a productive conversation with one of my coiling buddies. He had some questions for me. I had some questions for him. After a few life updates, we went to look up what we had learned from each other. Then I remembered, it was Levaquin that gave me the foot and calf pain. I checked the “warnings for prescribers” since this kind of information is never in the patient literature, and there it was, Achilles tendon ruptures in under 1% of cases, with longer treatment length increasing the risk. I remember downing 600mg-800mg of Magnesium to make sure I didn’t get that side effect. But the pain in my legs and feet freaked me out when I was taking it for two months or so.
Of course, back then, I wasn’t walking so much anyway. It turns out that walking makes the foot and calf muscle pain much, much worse. This was my second clue.
My third clue that Bartonella was causing these new symptoms came from looking at some Bartonella symptom lists on the blogs of other Lyme fighters. Here’s an example that mentions foot pain and muscle pain in the calves.
Which brings me back to spot coiling.
Spot Coiling: Bartonella
So I decided to try coiling my heels for Bartonella. I thought it might be diagnostic, and if so, provide a little relief. I did just two minutes on my heels on Wednesday night. It was a Lyme coiling day, so I hadn’t covered that part of my body already. Those two minutes worked wonders. Wonders! My heels stopped hurting. I was happy. But the two minutes on my calves did nothing. Somehow, though, muscle pain was less upsetting than having a shot of pain in my heel with every step I took.
Next morning, the heel pain was pack. So as soon as I got up, I coiled my heels for five minutes and I coiled the backs of my knees for five minutes. Again, it helped with my heels, but nothing for my calves.
The relief lasted all day in my heels. I thought I had discovered a new trick.
Thursday was the day that I popped my rib bone. I spent most of the day in bed with rib pain (cursing the lords of Kobol since I used the downtime to watch episodes of Battlestar Galactica). But when I got up and walked around, I had no foot pain. Unfortunately, the rib pain precluded doing the full Bartonella coiling schedule. So I really got to test if spot coiling worked.
Friday morning, the heel pain was back. This time, coiling for five minutes on my heels did…nothing. I managed to do the full Bartonella coiling protocol that day, but still, no relief. And it has been that way through today (Sunday). The pain in my calves went away on Saturday afternoon and hasn’t returned. But the heel pain remains.
My heels are forcing me to take it easy, but I’m not sure I needed the enforcement. I’ve been having a Bartonella flare, complete with the random symptoms beyond what I mentioned above: pulsing in my right ear, ringing in each ear, fatigue with a restless feeling like I need to be doing something but I can’t concentrate, frontal headaches, swollen neck glands, joint pain and stiffness in my hands, abdominal pain, headaches in the front and top of my head, intense muscle cramping in my shoulders, neck and scalp, and bouts of anger/hopelessness about this disease ever being conquered.
So, with my equanimity disturbed, I’m driving myself nuts. And sleeping constantly, like 12-14 hours a day.
I’m not sure if the flare is just part of some seasonal cycle I was previously unaware of. Or if it is my delayed menstrual cycle. Or if I am nearing some tipping point in the infection and so it has become more active as I coil it away.
Menstrual Mishaps (revisited)
My cycle has been off. I knew this because I’ve been recording my temperatures and I didn’t ovulate until around day 19, which is pretty late. Now the luteal phase has been going on for 16 days and counting. In other words, I’m late and agitated about that, too.
It was a risk, coming off Metformin and instead trying Vitex. I spoke to someone who suggested increasing the dosage of Vitex to make my cycle more regular, but actually, I think it is doing it’s job. I haven’t had heavy PMS symptoms (that are separate from the Bartonella symptoms) like bad cramps for two weeks, daily night sweats, or sore breasts. So I think the progesterone part of my hormonal system is less out of whack than it had been. I didn’t even need to put in the Shen Men acupuncture points this month.
So today, as the cramps finally started, but no period came, I figured I would start taking DIM. That was the plan if Vitex alone wasn’t enough. Vitex is a progesterone regulator. DIM is an estrogen regulator. I was going to wait until my period started before I began taking it, but I vaguely hoped that doing almost anything would precipitate a new cycle. No luck yet.
Anyway, I’m taking 150mg of DIM, about the mid-range of the suggested dose for women with “estrogen dominance” symptoms, including many I have, such as irregular cycles, excess body hair, and osteoporosis. I read that it can take 1-2 months to make a noticeable difference. My clock won’t officially start until the beginning of the next cycle, but I have my hopes up.