Since the last blog post, I had a few friends in town. One friend from NYC came for a week and we went out and did a lot of fun stuff: whale watching, visiting the Monterey Bay Aquarium, eating deep fried artichokes, going to the beach and walking in the slough and lots more. Before she got here, I had planned to coil the regular amount while she was here: 3 times a day for Bartonella, maybe only twice on some days. That didn’t happen.
Then for an additional three days, my friends and their two little children from Washington DC stayed with me. It was fun and intense and messy and fun. I thought I’d manage to coil in the morning and evening while they were here. That didn’t happen either.
In the grand scheme of things, not coiling the full amount isn’t ideal but it isn’t the worst thing I could do. I learn from the days that I don’t coil, just as much as from the days when I do. Here are a few things I learned this time around.
Before I got the coil machine, I spoke to someone who said the hardest part was continuing to coil when I started to feel really better (not just improved from the bad condition I was in). Coiling is time consuming. As I start to have energy, there are many days when I’d rather do just about anything else besides sitting with the coil on my body for 40 minutes, changing its location on my body every two minutes, and repeating two more times that day. Although it helps to be reading a good book (I’m currently reading 1491 by Charles C. Mann), sometimes I’d rather go for a walk, work on my coiling book, do errands, knit, talk on the phone, make my wedding album (!), make a salad, you name it. Instead, I’m lying down in the coiling room and passing the time.
Since January, when I’ve found that I need to coil a lot for Lyme, more than I originally believed, and that I have to coil a lot for Bartonella, I’ve both gotten a lot healthier and stronger, and I don’t want to coil so much. There are endless opportunities to do other things. Many of them preclude coiling, like visiting my sister in another state or going on a trip for a week to Anza-Borrego or Yosemite. These activities are important in a way that the coil can’t replicate. They are about shedding my identity of being disabled by Lyme as well as rebuilding my body. Without the assistance of a lively two year old, I won’t climb a slide or roll around on the floor and get up and hop like a bunny. Without the enchanting beauty of the natural world, I won’t go for a walk that reaches right to the edge of my energy. At home I might manage a yoga class or go for a walk, both of which are good and important. And for a long time, those pushed my physical limits. These other activities are about having a life again.
With my friends here, I found that I wanted to be with the people I care about, even if for a few days, it meant postponing my progress. And therein lies the struggle. I knew I’d slack off a little. My current goal is to break the slacking cycle and get back to coiling consistently and aggressively. It was hard after being at my sister’s house to want to coil. After two weeks of no herxing and minimal symptoms, the thought of heading into Herxlandia again was dreadful. It was easier to be with my friends when I wasn’t herxing, so I really did coil less than I could have. It didn’t occur to me until this morning that I could have done a modified coiling protocol of 10 minutes twice a day, just to keep my blood stream clear and prevent symptom build up. But like I said, I learn as much from not coiling as from coiling.
So in some ways, I’ve hit a new hard part. Before, the infections were the hard part. Later it was the herxes that were hard. Now prioritizing is the biggest challeng. Persistence is the key to really getting rid of these infections rather than managing them. I think it’s possible to figure out how to have a mostly normal life by coiling regularly but not daily and keeping the symptoms at a low but tolerable level. That isn’t what I want. I want to get rid of the infections, then stop coiling and taking all the supplements, then move on with my life as a healthy person. I focused on that vision as I began coiling again yesterday.
Stopping Too Soon
Having had this additional break from coiling for Bartonella, I discovered that the symptoms really do come back. The way I experienced the symptom fluctuations went something like this:
- Coiling a lot, the herxes built up and got pretty bad.
- I added more detox and the herxes leveled out.
- Continue coiling a lot and detoxing sufficiently and the herx symptoms diminish in intensity, some even disappear, a few new ones appear.
- Stop coiling for a few weeks. The herxes go away. The symptoms don’t come back right away. When they do, they are mild compared to the ones I had before I started coiling significantly for Bartonella.
- Coil a little for a few days. The herxes build slowly.
- Take another little break. Symptoms are back but still mild.
- Coil the full protocol for two weeks. Herx symptoms build back up to what they were several months ago before they started to diminish.
- Take another break for a week and a half. The symptoms come back, not so mild anymore. Seems like the Bartonella infection has had enough time to grow back enough to be a problem again.
- Coil the full protocol. Well, that’s what I’ll find out over the next few days…
The big thing that has changed is that I’m in a lot of pain again. I was ignoring it while my friends were here. But I could hear it in my voice when I was running out of patience or wishing I could take a nap. I woke up most days with moderate to severe pain in my forearms, hands, lower legs and feet, as well as tingling in my arms and hands. By the last few days of not coiling, I woke up with back pain that lasted the first half of the day. I had intermittent headaches. My abdomen was swollen even when I avoided all food triggers. I suddenly found myself motivated to coil again.
On the plus side, even though the symptoms are back, my strength and stamina have not started to wane. I need a lot of sleep, but when I’m up, I’m able to be active and function at a somewhat normal level.
Controlling for Probiotics
As I’ve mentioned recently, I’ve been on a probiotics kick, specifically adding fermented cabbage to my diet. I had some success with it in the first few weeks. Although it gave me intense, stinky gas, copious at first but diminishing in volume over time, my food sensitivities were reduced significantly. For example, I ate corn chips and nothing bad happened. (I’m still too nervous to eat berries.)
A question crept into my mind: would the food sensitivities have gone away sooner if I had started eating fermented cabbage two years ago when someone first recommended it to me? I started to mentally beat myself up thinking I was foolish not to try it when I first heard about it. Of course, back then, I had just discovered that I had a food sensitivity to cabbage. Fermented or not, I was avoiding it. I hadn’t read anything about using fermented foods to heal the intestines by rebalancing the gut biome (because much of it was published only a few months ago). Now, I’m still not 100% sure that all these probiotic foods will get me to the point where I have no more food allergies and a happy intestines that doesn’t leak out any food molecules and causing inflammation in the rest of my body. But the question is floating around my head.
Prior to learning so much about probiotics, I had heard that getting rid of Bartonella gets rid of food sensitivities. Again, I wasn’t convinced, but it seemed like a good thing to find out by killing off the Bartonella infection. And truth be told, the food allergies were getting less and less intense the more I reduced the Bartonella infection by coiling.
In the past 10 days, while I wasn’t coiling and the Bartonella infection load was increasing and while I continued to take fermented cabbage and other probiotic foods and supplements, my body’s sensitivities to certain foods got worse. A bite of corn meant several days of joint pain. In fact, I cheated a little a little more than that (pass the avocado), in a way that I’ve done since I started the fermented cabbage without repercussions, and I ended up this time with a big swollen belly, loose stools, dental pain, a headache and joint pain that lasted several days.
A control in a scientific experiment, strictly speaking, is the leg of the experiment that produces known results, to make sure that the other leg(s) of the experiment are not in some way influenced by something other than the independent variable that you are testing for.
In this case, I got to try three versions of the same experiment. I started out with food allergies.
- First I tried eliminating the influence of Bartonella. The sensitivities partially diminished.
- Then I tried eliminating Bartonella and adding intensive probiotics. The sensitivities to some foods were almost gone.
- Lastly I (accidentally) tried letting the Bartonella grow back while continuing the intensive probiotics. The food sensitivities returned.
So I’ve tried controlling for both eliminating Bartonella and introducing probiotics. Apparently both are necessary to get my digestive system to function properly.
All of this discussion of food sensitivities, by the way, applies to malvin containing foods, like berries and corn; to nightshade vegetables, like potatoes and tomatoes; and to cow dairy. Nothing yet has worked to get rid of my inflammatory reaction to wheat/gluten, which still causes joint pain and stiffness for the subsequent several days. Chocolate, which I tried ten days ago, still makes my stomach blow up and my skin break out. And I haven’t even considered testing my egg reaction because it generates such a horrible autoimmune response to my nervous system that could potentially cause permanent damage. Even still, getting the fruits and veggies back in my diet would be quite a win for me.
Today’s last topic is PCOS, Vitex, Metformin and chronic illness, all wrapped into one.
My personal theory is that although the Bartonella, Lyme and Babesia infections may flare during my menstrual cycle and cause specific symptoms associated with it, none of them is particularly responsible for the PCOS I’ve been suffering from since 2002. Instead, I attribute the PCOS to a secondary fall-out from having chronic infections that divert my body’s resources and use up my body’s reserves.
Using Metformin gave my body assistance with insulin regulation. However, after several years, I wanted to get off the last of the pharmaceuticals I am taking, in part because Metformin interrupts the way the some of the bacteria in the intestines function (and I’m working on rebalancing my gut bacteria right now). Previous attempts at stopping Metformin were unpleasant and unsuccessful, with my period disappearing and my menstrual symptoms intensifying.
Recently, I decided to use Vitex as an alternative to Metformin, in part because Vitex (a plant derivative) helps regulate progesterone which I seem not to make much of, based on my particular constellation of symptoms in the past several months.
The first month I used Vitex, I took both it and Metformin. My menstrual cycle was fairly uneventful, with several days of PMS and some fatigue and cramps the day my menses arrived. This past month, I took only Vitex. I was measuring my basal body temperature, as I’d been doing the previous two months. It was much higher and it was more irregular. I wasn’t sure when my period would arrive. Partly it’s because I didn’t get PMS symptoms until two days before my period. It came after 29 days and it was again only fatigue, cramps and loss of appetite. All in all, not too bad. The only confusing thing is the presence of nightsweats.
My cycle started when the Bartonella was starting to build up again, but before I started having serious pain and neuropathy in the morning. As part of PMS I had night sweats. They went away for two days. Then they returned, though they are very mild, only making my neck and shoulders damp, with the Bartonella pain and neuropathy. Possibly both hormonal fluctuations and Bartonella can cause night sweats.
I have no more major trips or events scheduled for the summer that will prevent coiling for more than an isolated day. Hopefully by Labor Day, which is when I’m next visiting my sister and her family, the Bartonella will be gone or almost gone.
The plan is to coil aggressively this summer, to write the blog posts I’ve had bouncing around my head for a month, to work on the book version of Coiling for Lyme and to start regular exercise again. I’ve got a lot in front of me…and I’m looking forward to all of it.