I’ve been talking to myself a lot the past month. It’s been a physically challenging, emotional roller coaster of a month. The vaccine I took at the end of March continued to wreak havoc on my immune system. The Lyme infection got more active. The Babesia infection got more active. The Bartonella infection got more active. And the unidentified other infection I suspect I have also seemed more active. Even as I reduced their loads by coiling, it felt like more dormant microbes kept waking up.
I couldn’t write. I barely used my computer. (And when I did, it was a very specific, time sensitive task or two.) I learned during this time in a new way how important it is to keep records of how I treat my tick-borne infections and what effects the treatments have. I made mistakes that I wouldn’t have if I had written down my plans. I suffered for longer than I needed to, especially with Babesia. I forgot what I do that makes treatment work well.
All month, I thought about what I should have been writing down. At one point, I started a blog post in a notebook because the computer wasn’t nearby when I was finally ready to write. It helped me figure out the first thing I was doing “wrong” (though there is no single “right” way, there are many ways to coil that are less effective than the best I’ve come up with).
Beyond the headaches and wrist pain and shoulder and knuckle arthritis, each of which stymied my attempts to write, I was pretty depressed much of the time. I didn’t want to talk. I didn’t want to write. The vaccine triggered a full-on relapse. I felt like I’d made a big mistake. I felt like I was starting all over again. I needed this vaccine (TdaP) to be able to travel this summer, and the intensity of the Lyme relapse made me question whether I could travel at all. My grand plan of taking this vaccine, then trying a flu vaccine in autumn, both of which were supposed to trigger the Lyme cysts into waking up and hopefully reducing the amount of dormant Lyme in my system, seemed like a foolish venture. I started to question my judgement, and frankly my goal to fully rid myself of the Lyme infection.
In the aftermath of these past few months, I’m reconsidering. I thought a sterilization cure was possible (completely eradicating every trace of all the tick-borne infections in my body). It might be. But if I have to go through being disabled again, I’m not sure it’s worth the trouble. I’m now looking at a functional cure. Stress my body in the ways that I’m likely to run into in the future and coil until I have no more symptoms (and a little past that), knowing that my immune system can keep in check whatever dormant bacteria are left in my body. I’ll do that knowing that if I have a major stressing event, I’ll need to go back to coiling.
All this has also made me reconsider what it might mean to get pregnant. When I thought it was possible to achieve a sterilization cure, I planned to reach it before considering having a child. Now I think it isn’t possible, at least on a time frame of my own fertility and on a treatment plan I’m willing to go through, so it would mean being on long term antibiotics again. All this has my head spinning. I have no decisions made, about pregnancy or anything else. But I am still clawing my way out of a pit I threw myself into, not realizing how deep it was or how slippery the walls would be.
Meanwhile, I’ve learned a lot and relearned a lot. I’ll get to that in more detail in the rest of this post. Mostly, I’ve tried my best to get well using only the coil machine and not adding back in the supplements or using dietary restrictions that I know will boost my immune system and reduce my inflammatory response. These things definitely would have made me feel better really quickly, but they would send the active Lyme bacteria right back into cyst form and leave me no better than if I hadn’t triggered the dormant infections at all.
A Month of Coiling
Since my last post, I’ve been dreaming of a coil machine equivalent that could irradiate my whole body at once. That would be incredible. Instead, I’ve been using two coils, trying to cover my whole body multiple times a day and juggling which infections to treat most. The thing that bothered me was that the symptoms were much worse than the herxes. I felt like I could coil more and get better faster on any one of the infections, but that all three were kicking my butt so I couldn’t really focus on just one. If I had the mystical full-body machine, I would have used it for 10 minutes every day on the Lyme setting, 10 minutes 3 times a day on the Babesia setting, and 10 minutes 3 times a day on the Bartonella setting. If I could have been doing that, I imagine life would have been more about the herxes and less about the overactive infections.
Instead, I was stuck with problems with my machine. The needle on the ammeter was wavering instead of moving smoothly when I turned on the machine and instead of staying at the designated position once I set it. It made me really nervous. I called someone who has more expertise in understanding how the machine works. He suggested that if the problem occurred with both coils, it was more likely the connector on the machine or some other central problem. I was a bit paralyzed in how to proceed to test it. So I retrieved the extra coil machine I lent a friend to play with and tried my old, trusty, first coil. Same problem. It definitely wasn’t from the coils. Then the problems escalated. The amplifier started acting up, turning itself off as though it had flipped a circuit breaker. I wanted to cry or scream or throw my hands up and start taking antibiotics again. (Overly dramatic, but I felt so bad, physically and emotionally, that I had no bandwidth for problems with the machine.) I called a friend who knows almost nothing about Lyme or coiling and asked him to let me think out loud, with all the huffing and frustration coming out at the same time. As soon as I hung up, I knew the first thing to try was changing the power strip I use to plug the machine into the wall. Problem solved. Halleluiah!
A Month of Lyme Coiling
I’ve been doing the same Lyme protocol all month. Every three days I do a full body scan. I’ve modified it since the trip to Mount Shasta because I realized that doing extra time on my central nervous system yields big results. (Reminder to anyone reading this, this is not the protocol to start with. It can cause a herx that could send a person to the hospital. After coiling for Lyme for 3 years I can handle this much coiling.)
Lyme Coiling Protocol
Repeat every third day
- Head: each side, top, back – 5 minutes per
- Spine: upper, middle, lower – 5 minutes per
- Liver, spleen, abodmen – 5 minutes per
- Each shoulder blade, chest, each side of ribcage – 3 minutes per
- Between legs: thighs, knees, calves – 3 minutes per
- Feet through coil – 3 minutes
- Each ilium front, each ilium back, each hip bursa,pubic bone, each upper butt cheek (to get iliac crest and femoral head), sitbones (bottom of butt) – 3 minutes per
The herxes have been present but not terrible: headaches, loose stools, extreme somnolence, long sleeps at night plus long naps, spine pain, cold hands and feet, and fatigue. These were less disabling than the Lyme symptoms themselves. I had joint pain, stiffness, cracking and reduced mobility in every joint. From my toes and knuckles to my knees, hips, shoulders and elbows, I was having a lot of problems. It hurt when I moved. It hurt when I stayed still. I couldn’t get restful. I couldn’t find relief. I tried some advil for my wrists, knees and neck when the pain got to the point when I couldn’t focus on anything else. I got mild relief, a slight reduction in pain, but it didn’t go away. In addition to the joint pain, I’ve had bone pain, especially in my ribs. In general, my pain level has been much higher. This contributed to a feeling that I’ve gone backwards and landed in a place I thought I’d never return to. The increased Lyme bacteria activity affected my moods, beyond what the pain caused. I was more depressed and defeatist than I’ve been in a long time. I couldn’t think straight, couldn’t concentrate on things I read or enjoy watching things on tv.
Slowly, coiling frequently, without all the usual detox activities, things lightened up. At this point, I have some shoulder and hand pain every day. I’m still pretty tired. But I can move around. I can knit again. I can type, at least today. However, I don’t feel like I’m through the woods yet. I get pain every afternoon in my ribcage. Before the vaccine, it only came when I ate wheat. Now it is every day. That pain signals to me that the Lyme continues to be active and I’m vulnerable to relapsing again.
A Month of Babesia Coiling
Since I’ve been coiling for all three infections, I’ve had to make do with coiling less than an optimal amount on each infection. I’ve been doing three coiling sessions each day, two coils available per session, split among three infections. At the beginning, I was coiling my whole body for Babesia, one minute on each location, 5 minutes each on my chest and liver, 10 minutes on my spleen.
About two weeks ago, I realized that coiling for Babesia twice a day, morning and evening worked better in the past to get rid of the active infection. At that point, I split up the coiling to use one coil on Babesia each morning and each night, doing the same protocol I’d been doing, only in two parts. It helped. I started to feel less tired. I had two days of crushing headaches (I wanted Athena to jump out of my skull already), then I felt like the Babesia symptoms were gone.
The symptoms at that point were fatigue and heart troubles (chest pain, extra click in my heart signaling that the tricuspid valve prolapse was triggered). The fatigue from Babesia coupled with what the Lyme and Bartonella kicked up made me want to spend a lot of time lying down. I couldn’t concentrate on anything, not even the radio. During this time, I went to do exercise a few times (stairs and walks at the beach) but that just knocked me out for three or four days afterwards. I felt pretty bad. But, once I changed the protocol to be split into two sessions per day, things started to get better.
I ended up having to skip a night of Babesia coiling. No problem, right? I thought I’d only need to coil for Babesia for three weeks after the symptoms were gone anyway. The next day I went back to my twice a day protocol. I had a big night sweat that night. What the heck? Why did it come back so fast? A few days later, I skipped again, and the following day after a regular Babesia coiling day, I had another big night sweat.
This is what I fear. Having to coil to keep the symptoms at bay but never getting rid of the infection. Then I remembered what I learned back in 2011. To get rid of the active Babesia, I have to coil my blood stream three times a day. It’s just a requirement. I relearned that twice before. Now on this 4th round of trying to get rid of an active Babesia infection, I forgot all over again.
I spent a morning trying to figure out what to cut out of Bartonella coiling to make room for the extra 10 minutes of Babesia coiling time I needed to do. I wished I had a third coil. Then it occurred to me that I have three coils at the moment. Bingo! Now I use the third coil in the middle of the day. I’m coiling at 570Hz, 1 minute on half my body (13 locations) in the morning plus 10 minutes on my spleen. In the afternoon I coil for 10 minutes on my chest. In the evening, I coil the other 13 locations on my body, 1 minute each, and 10 minutes on my liver.
Two days after I added in the 3rd coil, I got a migraine. These headaches are killer. Every day, I feel one coming on. Every day, I try to come up with a way to break it. Usually they start with light sensitivity (remember that? yet another gift of this relapse). Light gets it started and makes it worse. If it doesn’t start till late afternoon, I try to keep quiet and low light then sleep it off. If it starts earlier in the day, 8oz of cola do the trick. Since I have no other caffeine in my diet, taking caffeine at the beginning of a migraine cuts it short. I’ve done this twice, and not two days in a row. I’m afraid my magic bullet will lose its magic if I make it a regular habit. This post (which is becoming one of my longer ones) is fueled by a bottle of Coca-cola from Mexico. It goes down easier with sugar than with corn syrup.
With any luck, I’ll get through this in the next few days before I head to NYC for two weeks, followed by a camping trip when I get home. I didn’t plan for quite this big a relapse of so many infections when I decided on my summer schedule.
A Month of Bartonella Coiling
I’m always tempted to put Bartonella on the back burner, to do a minimum of coiling and deal with it later. But that doesn’t work this time. The days I spent in Mount Shasta let the Bartonella regrow and it was unpleasant when I got home. I had all sorts of trouble with my arms, poor coordination, tingling and numbness when I wake up from naps or in the morning. Tingling sometimes when I’m sitting still. Pain from my elbow to my fingertips, the entire part of my arm, not just the bones or muscles or joints. I’ve been tired a lot, though that’s from all three infections. I’ve had bowel problems and abdominal pain. My food sensitivities have all come back (though I’m not sure if they’re from Bartonella or Lyme or a combination of the two infections), leading to a swollen abdomen on many occasions, tooth pain, acne outbreaks and more bowel troubles. I’ve been terribly moody. It gets worse when I’m herxing, but I’ve been more than a little bit moody all the time. I’ve had brain fog to go with my short fuse and a series of crying sessions. It’s been bad.
I’ve been coiling for Bartonella two days out of three (the third being reserved for Lyme). Yet again, I feel like I’d have made more progress if I could coil daily with more coiling time each day the way I was before the Babesia woke up. I’ve changed my protocol to be 1 minute on each part of my body except for a few key areas that need extra treatment: back of head – 8 minutes, each shoulder knob – 5 minutes, upper and middle spine – 2 minutes each, sacrum – 4 minutes, liver, spleen, abdomen and chest – 5 minutes each. That’s all I can fit in a day, if I’m also coiling for Babesia.
At the beginning of the month that started May 25, I herxed a bit from coiling like this. There were tension headaches, kidney pain, and constipation, followed by hand and foot pain upon waking, urinary hesitation, and lower abdominal pain. The kidney pain and tension headaches are gone. I still have tension in my neck and shoulders, but they don’t seem to be triggering headaches. I still get a lot of lower abdominal pain and constipation. I’m also still having symptoms in my arms and hair-trigger emotional outbursts. Bartonella makes me feel crazy.
The Chocolate Experiment
When I last wrote, I was taking chocolate, 87% cacao, in the morning in an attempt to bolster my cortisol levels. I did this for a little more than 3 weeks. I didn’t notice any difference, except that it made it harder to nap. I think the caffeine overpowered any other benefits the chocolate might have offered. I didn’t really like the flavor unless I ate it with something sweet (like a dried mejool date). And I couldn’t tell that it was helping at all. So I stopped. Napping is easier but nothing else has changed.
I’m not sure what to do about my cortisol, if anything. I haven’t tested the levels in several years, but symptomatically, I seem to have a lot of traits associated with adrenal fatigue. I get tired late morning for awhile, then bounce back in the afternoon or evening, depending on if I get tired enough to nap. I’m losing more hair than I’d been doing before the relapse. I’ve started putting on pounds again, after stabilizing a few months ago. I haven’t been eating extra food, carbs or sweets. I just seem to put on weight by doing the same old thing. The only thing I think I can easily change in the near future is to begin exercising again as the fatigue has started to let up.
Meanwhile, my period was on time (28 days), with one day in bed, mostly sleeping, and cramps the next day that went away with one dose of advil. So something is still working right.
The sinus infection I caught in March is still dogging me. Only in the morning and before bed do I notice it, but it hasn’t cleared up.
I know that to deal with all of these random extra problems, I have to get the infections back under control. I suspect that I can do it with coiling alone, it just takes time.