I have to laugh at myself. I enjoyed the week of cake and sugar a little too much. The ten days since I started coiling again have been like going to the dentist as a ten-year-old and discovering a cavity.
Before I get into the details, I want to mention the idea of stressing the body. For much of the time I’ve been healing, as well as the first year when I was mostly searching for a diagnosis and hoping I wouldn’t die, my primary goal was to not stress my body too much. The infections had already stressed me to my breaking point. I diligently learned what foods to avoid. I added in a variety of medications and supplements. I went to a physical therapist for a while. I slept an incredible amount of time. I rested. I hydrated. I ate tons of protein. It was the only way I knew to survive.
One of the reasons I was interested in the coil machine was that I didn’t want to live that way forever. I wanted to get well enough to live normally, to do exercise, to be able to handle regular stresses again. I wanted to someday stop taking all the pills, fretting over my foods and going to bed early every single day. In many ways, I’ve done that. I’m not symptom free, for sure, but I’m not incapacitated as often or as profoundly. Now I look at the stressors, like a week-long sugar binge, as a way to test how active the infections still are. What can my body withstand before it succumbs to the infections all over again?
So, listed below is what I learned about the state each infection, how I learned it, and what I’ve been doing as far as coiling again to get the active infections back under control.
Out of Control Symptoms
First things first. Monday morning (6/15/15), the binge was over. By then, my body had gone crazy. Everything hurt. Muscle pain. Joint pain. Headaches. Chest pain. Abdominal pain. Neurological pain in my extremities. All day fatigue. Nausea. Irritability.
I felt like my body was out of control.
Lesson 1: Some infections are still active in my body.
On Monday, I coiled my central nervous system for Bartonella and for Lyme. On Tuesday, I coiled the rest of my body for Lyme as well as my whole body for Bartonella.
By Tuesday night, the joint pain had disappeared. So far, the Lyme coiling had gotten rid of the most obvious Lyme symptoms.
This left me with a whole host of symptoms. In addition to the ones mentioned above, I had bladder hesitation, kidney malfunction (no urine produced for a while, then when I lie down, my bladder fills rapidly over and over), reflux, gas, loose and urgent stools alternating with dry and reluctant ones, heart palpitations, tachycardia, migraines, and fatigue in the middle of the day for a few hours and again at around 7pm till bedtime. The only consolation was that most of this qualifies under the heading dysautonomia. All I need to do is reduce the infection’s actions on my autonomic nervous system and most of this should disappear.
Even though it wasn’t all dysautonomia, the rest of the symptoms were neurological in nature: tingling in my arms when I woke up on Tuesday, and foot pain in the mornings Monday-Thursday.
I continued to coil my entire body for Bartonella. Even though I think most of the infection is in and near my central nervous system, the goal of all the sugar was to get the bacteria into my blood. So I’ve been coiling my whole body every day to kill off the bacteria wherever they landed.
On Friday, I had a new problem in my left shoulder. All the muscles seized up and every movement in my shoulder was popping and cracking against my ribcage and clavicle. It was immensely painful. I went to an acupuncturist at a clinic on Saturday. The treatment didn’t seem to help much, but the suggestion to put heat on the affected area worked like a charm. My shoulder is still popping and cracking, but less often and without so much pain. I tend to have this problem to a smaller degree with Bartonella and a greater degree with Lyme.
It became more obvious on Sunday(6/21/15) through Tuesday that the Lyme is still active. Many of my joints started popping and aching again. My knees hurt a lot. Wednesday I coiled for Lyme and things started calming down within an hour of coiling. The only thing left still popping is (you guessed it) my left shoulder.
Lesson 2: One coiling session does not get rid of a Lyme flare.
More Lyme coiling to come.
I already knew that Bartonella coiling was going to take a while. Friday, I switched back to coiling only my central nervous system, and doing it three times a day. Since the sugar binge, I’d been doing it twice a day while I used the third session to coil the rest of my body.
Many of the Bartonella symptoms are still lingering, but have diminished in strength since I started coiling for it again. The worst one is the fatigue. That seems to get worse with coiling. It comes in waves: I have energy in the morning, but I feel like I can’t move by 4 in the afternoon and I need to rest until bedtime. The migraines stopped for a week once I started coiling, but today I got smacked with another one.
Even with the fatigue and migraines, I’ve managed to go for a bike ride, do some cooking, and do some morning yoga, not all on the same day. But I have been a little bit active each day before the fatigue sets in. Today, the fatigue is a little less, but I don’t necessarily expect it to stay that way.
Lesson 3: Bartonella is less debilitating than it used to be.
There’s one symptom that has me flummoxed. My eyes are itchy. I don’t know if it is a reaction to something in the environment or something internal (shifts in my immune system functioning). It keeps reminding me of a feeling I sometimes get in my eyes when I have a Babesia flare.
Babesia flare? Well, last year when I tried having eggs, I gave myself a flare. Then I tried to cheat by coiling less than necessary to get rid of it, so the flare dragged on and on. This year, no flare so far. It’s bizarre. I’ve been expecting it. I was almost hoping to have a symptomatic, obvious flare right away, which would have allowed me to do a PCR test for Babesia as well. No symptoms means there probably aren’t any (or at least not in sufficient number) microbes in my blood to make it worth testing for it.
On the other hand, it’s very exciting to have provoked flares of the other two infections and not heard a peep from Babesia. I’ve had little symptoms that are shared by Bartonella: night sweats and fatigue. But the night sweats woke me up hot, like Bartonella, not cold like Babesia. The fatigue has not been an all-day every-day fatigue. I’ve been up and around and somewhat active, even if I’m done for the day pretty early.
I’m not ruling out a Babesia flare. Last time it took a while for the symptoms to be severe enough for me to recognize them. So if, in the next few weeks, they crop up, I’ll be ready to start coiling for them.
Lesson 4: (As I learned in spring 2014) Babesia can have a delay between a trigger and a flare.
Non-Lyme Medical Care
It is often just about all I’ve had attention for to deal with the problems that come from tick-borne illnesses. For years, all my medical interactions were in some way related to these infections. Rarely, I remember that I should take care of other things, mostly preventive or screening, like a PAP smear or, in this case, a colonoscopy.
Colon cancer runs early and often on one side of my family. So I had a screening 10 years before the recommendation for the general population, but more importantly when I am 15 years younger than when someone in my family died of colon cancer. One of my parents started getting screened in their 40s and had pre-cancerous polyps. I think the only responsible thing to do, since I have so many other medical problems, is to head this one off at the pass.
Friday (6/26/15) was the big day. I opted to have the procedure with out anesthesia, or as the anesthetist kept correcting me, deep sedation. The last two procedures I had that called for deep sedation had me out of commission for 3-4 days, with nausea, weakness, and a feeling like I was interacting with the world through thick plexiglass. Everything was muffled and I couldn’t quite connect my senses to my surroundings. I think this comes from whatever neurological problems the tick-borne infections have caused. Whatever the cause, I’d rather be very uncomfortable for 20 minutes than messed up for 4 days.
The doctor and his staff dealt with it well. Apparently about a patient a month (or maybe fewer) request to have the procedure done without anesthesia. They knew what to do. I was fine.
My intestines took a few days to recover. I ate probiotic foods and natural fiber to get things back on track. Today (Monday, 6/29/15) I’m closer to my version of normal.
I’ve read several times about essential oils as a part of rebalancing and healing the body. I’m not sure how strong they are, though, knowing me, I react strongly to every treatment. Despite being unsure about whether they might give my immune system too much of a boost and thus prolonging the amount of months I have to coil, I decided to go for a consultation.
I ended up with a mix that is primarily black pepper oil with a few tiny quantities of other oils mixed in. Hypothetically, it should help heal my intestines and nervous system, which in turn, should make me not so tired. We’ll see what happens. So far, I couldn’t sleep all night after applying a small amount to my feet. And I’ve otherwise been tired. I don’t know what to make of it.
This might be a short lived experiment, if the oils just make things worse. Or, if they seems to do something positive, I might stop to see if I get a rebound of symptoms, in which case I’ll coil until the symptoms are gone before using the oils again.
I think my desire to try oils is born out of impatience. I want to feel WELL again. I’m definitely better than before, even with the rocky setbacks and rebounds, but I’m not WELL. I want to be WELL and I’m so tired of slogging through slow (if consistent) progress.
In the meantime, I’m coiling away on Bartonella. I’m hoping for a breakthrough sometime in the next few months.