Posts Tagged ‘babesia’

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Sugar Binge Aftermath

Monday, June 29, 2015

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.

Something Missing

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.

Essential Oils

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.

Disclaimer

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Finishing that thought

Thursday, May 21, 2015

Yesterday, I had to stop using the computer because it was making a migraine worse. By some magic (and a head massage from my husband) I woke up this morning with no pain in my head. All day, I’ve been feeling a little spot on the left side of my head throb, with mild to moderate pain that comes and goes. Still, that’s not so bad. If anything, I’m learning that bright light in a dark place (like looking at a wall with a small window in it) is potentially one of my migraine triggers.

I read a little about migraines to see if I can or should be doing something besides resting quietly and taking a shot of caffeine (Coca-cola). What I learned is that the medical research community see migraines not just as a vascular problem, but one that is mediated through the trigeminal nerve. Migraines are associated with autonomic nerve dysfunction. I guess it makes sense that I could be more susceptible to migraines while I’m doing my best to beat down Bartonella, which has been giving me symptoms of autonomic nerve dysfunction.

Anyway, this blog is really to finish logging my activities of the past two and a half weeks, continuing where I left off yesterday. Please let the pounding over my left eye stop for long enough for me to finish…

Co-Infections, Continued

Yesterday, I mentioned an article in the most recent issue of Lyme Times. Once again, I’d like to put in a plug for membership in LymeDisease.org, as they fund research as well as support legislation that benefits people with tick-borne illnesses. The article called, “Co-Infections,” by Christine Green, MD, gave me some new insight into Babesia.

Dr. Green wrote about the symptoms of Babesia, including all the typical symptoms I’ve come to associate with it, sweats, chills, headache, and cardiac problems like rapid heart rate. It is also causes vomiting and diarrhea, other autonomic nerve dysfunctions, and POTS (postural orthostatic tachycardia syndrom). I have postulated that this infection is involved in these symptoms, but it was good to see it written down by someone who has seen thousands of patients. The kicker in the article was cell phone sign, a feeling of vibration in or on the limbs. I used to get this in my leg, only I thought of it as a pager implanted in my calf due to the size of the area affected by the sensation. I had no idea until reading this article which infection caused the symptom. All I cared was that it didn’t happen to often, and I haven’t felt it since September.

While on the subject of Babesia, it occurred to me at the start of my last menstrual cycle the night sweats I often have for one or two nights before menses begin could be a Babesia flare. Sometimes I have other symptoms of Babesia or Bartonella as well. These symptoms usually calm down in two or three days. Having read about the changes in the immune system that can happen over the course of the menstrual cycle, I realized that there might be a slight depression in my immune system that allows the chronic infections to activate. Then, over the next few days, as my immune system returns to normal, the infections are put back into a dormant state.

This led me to a new idea about coiling. I’ve generally coiled for Babesia for weeks at a time, three times a day. The schedule doesn’t leave time for coiling other infections very much while I’m doing Babesia. However, it seems that there is an opportunity to reduce the infection, even just a little bit, on the days after a big night sweat, right before my menstrual cycle begins.

I did that last week. I’m not sure if it did anything, but I think if I make a habit of coiling for Babesia for a day or two each month, I’ll continue towards my goal of zero Babesia cells left in my body.

Lyme, Too

Sometimes I think it’s pretty funny that Lyme gets top billing when it comes to tick-borne infections and that the other infections are labelled co-infections. The most disabling infection for me was Babesia. The hardest one to shake free of, the one that still causes disability in my present life, is Bartonella. Lyme has been a problem, but it certainly hasn’t been the most problematic of the tick-borne infections I’ve acquired.

With that in mind, I’m coiling for Lyme every 6 days. I tried to go as long as a week between sessions, but by the 7th day, I had mild symptoms, such as pain in my ribcage. It isn’t a disabling symptom, but why put myself through unnecessary pain? At this point, the Lyme herxes are simply a feeling of sleepiness earlier than my bedtime, and the need for a long night’s sleep (>10 hours).

Miscellaneous Thoughts

I have several supplements sitting out on the counter in the kitchen. Together, they make up the recommended formula for bone building. (Note, most doctors just suggest calcium. But most holistic practitioners also suggest magnesium, vitamin K2 and vitamin D3.) I took them for a few days, but my kidneys were bothering me so much, I didn’t want to add to their stress. Once the migraines are over and my kidneys are okay, I think I’ll take the bone-building supplements again. They cost a bunch of money, so there is no reason to let them expire and be wasted. I’m sure my bones could use the help.

Other unusual consumption last week included beef, the first time I’ve eaten it since 1997. Back then, I used to feel sick when I ate beef or pork. So I stopped. I became a vegetarian the following year, once I’d had enough chicken to last a lifetime. In 2010, I added seafood back into my diet. For the past two years, I’ve had some turkey at holidays. From an environmental perspective, I still believe that eating primarily plant foods is the best we humans can do for the sustainability of the planet. At the same time, I acknowledge that our bodies benefit from some amount of animal protein (as well as B-12). So I’ve added some occasional variety to my diet.

Anyway, after 18 years, the single ounce of beef, a gift from the larger portion my husband was eating, sat like a lead weight in my belly. Although it tasted quite delicious, it doesn’t really call me to eat it again any time soon.

The other food I mistakenly consumed was a tiny bit of egg-wash on a slice of pie. I usually avoid eggs more carefully. I just forgot this time. Fortunately, the fallout was minimal: nerve pain in my hip and down my leg, nerve pain in my feet at bedtime, gas, and constipation. No nerve damage or extreme pain lasting several days, as I have experienced in the past.

The big question is whether the egg consumption (or beef consumption) was the trigger for a migraine I had last week. The migraine started the same day as my menstrual cycle, and one day after eating egg and beef. Hormonal fluctuations can trigger migraines. Yet I haven’t experienced migraines consistently with  the monthly onset of menses. I have, however, consistently had headaches, though I’m not sure if they were all migraines, with consumption of egg. I guess this is a note to self  for understanding the triggers of future migraines.

I’m ready to get away from the screen and do something more restful. This learning process about the infections, migraines, and other things will continue, hopefully until all the symptoms are gone and it becomes purely historical information for me as well as a resource for others.

Disclaimer

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Kidney Cocktail

Monday, May 4, 2015

Over the past week, I’ve been zooming ahead with coiling for Bartonella. At first, it was a relief. The day after  I coiled my central nervous system three times in one day for the first time, I had so much energy. It felt like I woke up again after feeling tired for long enough that I was sure I was having a Babesia relapse.

After the initial burst of energy, the rest of the Bartonella herx kicked in with neuropathic pain and tingling and static in my arms especially and my legs as well. I had a few headaches. Then constipation started and kidney pain. The kidney pain is what really got to me.

To deal with kidney pain, my baseline treatment is chanca piedra, an herb, and the main ingredient in Renavive, which is what I used to use. I take it in the morning before I coil, giving me an hour to absorb it before I eat. When I was coiling my whole body over the course of a day, rather than focusing on my central nervous system, that was enough.

Intermittently, I was drinking roasted dandelion root tea, on days when chanca piedra was not enough to keep my kidneys happy. As I transitioned to coiling my central nervous system twice a day, I had to start drinking the tea, two cups made from one tea bag, every day. That kept the kidney pain level to a manageable level, though it never quite went away.

Once I bumped up the coiling to three times a day, the kidney pain was beyond tolerable. I was walking around with a sour-faced grimace all day long. The pain, itself, contributed to a feeling of being tired. Beyond that, my body just couldn’t keep up with the die-off toxins. I started to have insomnia, the kind that wakes me over and over at night with dark, fantastical dreams that seem so real and disturbing. My bladder feels irritated, I get hot and sometimes a bit sweaty. Each time I wake up, I can’t fall back to sleep for quite a while.

My first instinct was to add in hot baths. Those are tricky, because when I stop taking the baths, I have a Lyme flare. So I hesitated and procrastinated and cursed the pain in my back.

Saturday, I was cleaning out the cabinet where I keep all the supplements I’ve purchased. Every six months or so, I look in there to see what’s expired and to see if there is anything I want to take before it expires. I happened upon some milk thistle. I knew it was good for liver detoxification, so I put it on the counter to take on Sunday.

Milk Thistle growing in my neighborhood.

Milk Thistle growing in my neighborhood.

Milk thistle put me back on track. Within about two hours, the kidney pain was almost gone. It was just a faint shadow on my back. I was so relieved. Then I started looking up information about milk thistle and discovered that it also has protective qualities related to kidneys.

Like all natural supplements, milk thistle, dandelion root, and chanca piedra, have had conflicting results in scientific studies. I can’t say for sure how they work or that I’m taking an optimal dose of each. However, as I’ve tried each of them, and now using them in combination, they seem to be what I need to get through Bartonella herxes. I’m glad to have found my kidney cocktail.

My chaser, however, is for my intestines. It seems that all three herbs have some beneficial effect on the digestive system and the liver. In particular, the herbs can have a mild laxative effect. They certainly help. I have less pain and strain when I take them than I do when I’m herxing from Bartonella and not taking them. They aren’t enough. My evening chaser, which I take with the dandelion root tea, is two prunes. I’m not a lifelong prune eater or prune lover, but they help so much at this stage in my healing process. Just two at night make all the difference in Bartonella herx related constipation. (I know this well from the nights I forget!)

I’m still dealing with insomnia, headaches and some strange pain and sensations in my nervous system. Yesterday, I had a bout of congestion in my bronchial tubes, with a cough and everything. It went away overnight. In addition, I felt breathless shortly before bed: I was panting when I went down the stairs to get a drink, and panting again as I went back up. The Bartonella coiling is doing something and I think the Bartonella is trying to fight back.

Bartonella CNS Protocol

832 Hz   —   45 minutes per session   —    3 sessions per day

  • Head: each side, top, back – 5 minutes per location
  • Spine: upper, middle, lower – 5 minutes per location
  • Each shoulder knob – 5 minutes per location

Note: when doing the upper spine, tilt head back to get a second round of 5 minutes on the back of the head.

Mixed Signals

To confuse the situation a little more, the disappearance of the need-to-lie-down-all-day-long fatigue the day after I bumped up the Bartonella coiling, also came two days after doing two days of Babesia coiling.

My experience has most frequently been that coiling for Babesia, when Babesia is the source of my symptoms, usually results in a pretty rapid change in symptoms (for better or for worse). So if nothing happens after two days, I write it off.

The exception to this pattern happened this past autumn, when I added 753Hz to my existing 570Hz Babesia protocol. I didn’t see a change for about 4 or 5 days. Then the changes were pretty mild, but definitely noticeable. I had night sweats and headaches after they had disappeared during that round of Babesia coiling. In other words, it is possible to have a delayed herx with Babesia (as happens with Lyme and Bartonella).

The result is that my conclusion that the fatigue culprit was Bartonella and not Babesia is a little cloudy. It could be that I killed off a small but growing amount of Babesia. Or it could mean that I got past the hump with Bartonella. I’m just not sure.

For now, I’m not exhausted and fatigued all day every day. I’m sleepy, probably because I’m up for several periods at night, but that is remedied with a nap. Post nap, I’m okay again.

Trailing Off

My Lyme herxes are trailing off. At this point, I have no symptoms of infection on a daily basis. Instead, I see symptoms only the day after I coil. I believe these are from the herxes rather than from bacterial activity. Furthermore, the only symptom I have is popping and cracking in all my joints. It isn’t too painful and it goes away over the course of a day.

I’ve dropped back from coiling every third day, to letting 4 days go by, and this week letting 5 days go by between coiling sessions. The herxes remain minimal.

Loving My Body

For quite a while, let’s say, on and off for a year and a half, I’ve been trying to lose weight. I gained a ton of it while I was taking Vitex and working on Bartonella. Both of those can help pack on the pounds.

During that time, I kept putting off purchasing clothes that fit me. I just didn’t want to spend the money, especially since I planned to get back to what I consider a healthy, comfortable weight (about 140 pounds). This has been a turnaround from the years when I was terribly underweight from all the infections and all the antibiotics. Back then, I didn’t want to buy clothing either, sure that sooner or later I would get back to a healthy weight.

Of course, by the time I bought clothes, I only had about a year during which they fit, before my weight went back to a normal-for-me 135 lbs. Still, at that weight, I look like an adult female (not emaciated or weak), and that’s the size I’ve been most of my adult life.

Then I added more weight and more until I hit 170 lbs. That’s when I stopped taking Vitex. It took a year to lose the first 10 pounds and keep them off. Now I’m trying to break the 160-lb barrier. It’s complicated. I think it’s possible if I go on a super-strict diet with no carbs and no sugars. I don’t mind giving up the sugar, and I already do it for weeks at a time. But I’m so sad at the prospect of giving up all grains and fruit, like I had to for 6 years when I couldn’t digest so many foods, that I can’t convince myself to do it again now. I’d be fighting an uphill battle anyway because Bartonella tends to mess with a person’s metabolism, making it easier to gain weight than to lose it. And finally, I have to be careful with the amount of exercise I do if I want to be able to get out of bed the next day and avoid heart problems. As I wrote about last time, I can do some but not much and not new forms without triggering a relapse of multiple infections.

What this means is that I’m putting some effort into losing weight, and it pays off only in that I’m not gaining more weight. Now, at a year of approximately the same weight, I finally broke down and purchased size 14 jeans. I might have fit into size 12, but I hate putting on tight jeans and feeling uncomfortable until they stretch.

What this has done is taken off the pressure. I can be relaxed about my weight and comfortable in my clothes…which makes me more comfortable in my body.

One last thought, one that came out of cleaning out the supplement cabinet, is that while I’m coiling for Bartonella, I might as well take the bone building supplements I bought when I was more scared about osteopenia. No need for me to let them expire only to purchase more at the end of the Bartonella cycle. Instead, I’ll add them in sometime next week, shortly after I make sure that the milk thistle dosage is in the right range.

Disclaimer

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Perturbation Theory

Saturday, April 25, 2015

Perturbation theory is a phrase that was kicking around in my mind after I wrote the last post about my evolving views of exercise and how it fits into a full recovery. I looked it up and realized that it was not quite what I thought, but that its actual meaning is as interesting as what I wanted it to mean.

Below, you’ll find my analysis of what happens when I perturb the stasis that I sometimes find, the periods of time when I’m well, then do something simple that unexpectedly reduces my capacity by a lot. There is also a report on the two-day coiling challenge to see if Babesia is at the root of my current struggle with having no energy. I’ll end with the next stage of fighting Bartonella and how I plan to get past the place I’ve returned to where I’ve gotten stuck before.

Perturbation Theory

When I thought about the phrase, Perturbation Theory, I defined it for myself in the context of treating chronic tick-borne illnesses. If I set everything up right, I can keep my symptoms to a manageable level that allows me to function each day and do what I’d like to do. If I perturb the system, with exercise, travel, certain foods, lack of supplements, changing my coiling routine, missing a night’s sleep or catching a cold, then the system crashes. And of course, I crash and become more incapacitate for some period of time.

Conversely, when things feel bad, when I have a symptom that is incapacitating and won’t go away, I can perturb the system to my benefit. When the symptoms are from Lyme, I coil more often until they go away. When they are from Babesia, I coil a lot for a few weeks, watching them get worse than better. Sometimes a free floating symptom might be temporarily tackled with a strong anti-oxidant supplement, though that tends not to solve the problem unless I keep coiling for the underlying infection.

We’ll get back to this idea shortly.

What Perturbation Theory is in the world of mathematics (and quantum mechanics, which is where I first heard the phrase about 20 years ago) is the idea that for an unsolvable problem, one can find a similar problem that is solvable and use the solution to get an approximate solution to the unsolvable problem. Then to get a better approximation, one breaks the unsolvable problem into two parts, the solvable part and the unsolvable part, and uses a “perturbation” to approximate the difference that represents the unsolvable part. (Click the link above to get a more thorough explanation.)

To apply it to the chronic tick-borne infections I carry, the unsolvable problem is how to get rid of all the infections and be unaffected by them for the rest of my life. The more solvable problem is how to reach a state where I am in no way debilitated by each illness, in other words, that I put each infection into remission. I’ve solved this problem on an extended, but not permanent basis for Babesia, and for a shorter but still extended time, for Lyme. I have not found a solution yet for Bartonella.

The question then becomes: how do I add small perturbations to my solution for the remission periods to get closer and closer to eradicating the infections? What I’ve come up with so far is to trigger the infections by doing things I want to be able to do in the elusive stage in my future, the one I call, “When I Am Well,” and coil until the infection is no longer able to thrive in the altered physical environment.

These small perturbations, using either definition of Perturbation Theory, seem to have an effect on my abilities, both in the short and long run. In the short run, many perturbations have a negative consequence. I feel worse. I can do less. I am more tired. I have more pain, etc. In the long run, I often return to a state of fewer symptoms, as long as I coil adequately while I am experiencing the symptoms.

Again, the converse is true. When I generate small perturbations that make me “feel” better in the short term, like adding in anti-oxidants, they eventually become less effective, or I decide I don’t want to take them forever and I stop. In the long run, they have postponed my ability to kill off the underlying infection by keeping it dormant, while I enjoyed temporary symptom relief.

This concept is important for a few reasons. First, I have always believed, and continue to believe, that I should start where I am in treatment (with supplements or other modalities to reduce symptoms or increase detoxification), add in as much coiling as I can stand until the herx reactions die down, then go back and reduce the adjunct treatments. When I reached the point where I didn’t need much additional treatment beyond coiling, then I experimented with changing other things, like foods or exercise. I didn’t have the theoretical basis behind it, I was simply ready to try to get my life back to normal.

The second reason this is important right now is that I’m at a crossroads with Bartonella and I’m trying to decide how much support to give my kidneys. The best treatment, by far, that allowed me to coil a tremendous amount and make big progress on Bartonella was to sweat regularly, mostly in a dry sauna, but also with hot baths. Doing this will prevent me from continuing progress on Lyme, and quite frankly, might cause the Bartonella to become dormant as well. So it is on my mind while I figure out what to do with Bartonella.

Babesia Coiling Test

This past week, I did a short test to see if my persistent fatigue is likely caused by a Babesia relapse. Frankly, I was hoping it wasn’t, but I’ve learned over and over that ignoring Babesia relapses just slows everything down.

I tested for it by coiling for Babesia. On Sunday, I coiled my liver twice, 10 minutes at 753Hz and 10 minutes at 570Hz. It was a short provocation to see if I either triggered a migraine or had a night sweat. On the same day, I also coiled for Bartonella. I had a tension headache that evening. The weather cooled and I had no sweat of any kind overnight. I was as tired the next day as I had been the previous days.

I continued the test on Tuesday and Wednesday, doing a full body coiling protocol each day. No migraine type headaches (but another tension headache, which I’ve been getting more often with continued coiling for Bartonella), no night sweats, about the same level of fatigue.

Basically I decided that Babesia coiling was having no effect. If either I’d had a big change in energy (better or worse), or had migraines or nightsweats or low blood pressure, I would know that Babesia was playing a role in my current fatigue. But, for now, I’ve had a negative result. So I can focus on Bartonella and not worry about coiling for Babesia.

Bartonella Rerun

Having now convinced myself that fatigue is not from Babesia, I had a feeling like I’d reach this point before, several times. Bartonella, as I often write, is the infection I think I’ve had since childhood, and the one that seems most embedded in my body.

This week, besides the Babesia test, I ran into my rough patch with Bartonella. It started with increasing kidney pain. One night I had day-glo yellow urine, something I haven’t seen since I took traditional Chinese herbs in January. I’ve been feeling exhausted and out of sorts all week. Constipation has returned. My joints are bothering me again. I’ve even had a return of the dreaded butt acne.

Not only have I reached this point in previous years while coiling for Bartonella, it is exactly at this point in taking IV Rocephin that I discontinued using it. Now, after getting to this point and abandoning Bartonella treatment multiple times, I can recognize that this is yet another time when my saying, the only way out is through, applies.

When I was on Rocephin, the kidney pain was coupled with insomnia (which hasn’t (yet?) returned this time). I couldn’t sleep when I was taking it. Then, after about 13 weeks, I started having serious joint pain again, so I decided to stop. First, I wasn’t familiar with the idea that Rocephin treats Bartonella as well as Lyme, and that it’s the only drug to do so that I took that penetrates the blood brain barrier. Second, since I thought I was treating Lyme, I assumed that I was having medication side effects and that I had reached a plateau and it was time to go on something else to treat my joints again.

If I understood then what I believe now, that Bartonella is the primary culprit in my disability, and that Lyme and Babesia were what pushed my body past the point that it could contain Bartonella, I would have started with Rocephin and stayed on it much longer. But I just didn’t have the information then. I’ve learned a lot by coiling and being able to figure out which infections cause which symptoms. I even understand the overlapping symptoms better now. Beyond that, I would have preferred to start with Rocephin rather than taking so many other different antibiotics first and killing off so much of my gut microbiome.

Even now, I have moments when I want to stop coiling and just take Rocephin until all the neurological problems go away. In my fantasy, Rocephin would be faster and more direct. But I’m not yet ready to give up on coiling since I’m also familiar with the side effects I experienced with Rocephin.

The only way to get past this point in treating Bartonella is to coil until my kidneys are fine and the neurological symptoms I’ve been writing about for the past few months are behind me. (These include: tingling in my arms and legs; pain in my arms, wrists and hands that follows my ulnar nerve or my radial nerve; a funny sensation on one side of my body, formerly the right side, but it switched to the left on Thursday; muscle spasms in my upper back and left shoulder; tension headaches from muscle spasms; strange sounds and lack of sound in my right ear; and on and on.)

The plan at this point, starting today, is to coil my central nervous system for Bartonella three times a day (5 minutes in each of the following locations: head — each side, top, and back; spine — upper, middle, and lower; each shoulder knob). The question is then, how do I keep up with the herxes, particularly the way they affect my kidneys? The first thing is that I’m starting to drink dandelion root tea daily. The second is that I’m starting to drink kombucha again. Both of those have the possible side effect of suppressing Lyme or even Bartonella. I don’t plan to do another round of traditional Chinese herbs because I’m not totally sure that they didn’t suppress the Bartonella as well as heal my kidneys. Then there is the last thing I am considering: hot salt baths.

These baths are great in some ways. I don’t have to fill the tub too much (I live in drought-ridden California) to get my body temperature up and get myself sweating. Once I’m sweating, I feel so much better. The kidney pain goes away. In fact, it is the only thing I’ve done for Bartonella that has gotten rid of kidney pain while I continue to coil aggressively. I was going to a dry sauna at the gym three times a week two years ago in autumn. I was coiling a lot back then. When I didn’t go, I the pain came back, along with many Lyme symptoms. When I did, I felt energized, like a new woman. It is incredibly tempting.

I don’t plan to join a gym again at this point. I tried for the month of April and I just didn’t recover from one activity fast enough before the next attempt at a class or workout to make financial sense. (Nevermind that the pool was unavailable the whole first week, or that the yoga class I wanted to take was cancelled for two of the four Fridays in the month). More importantly, I’m not yet committed to sweating in a dry sauna as my primary method of sweating. I have two other options: the biomat, which I haven’t used in two years, or baths.

So the question over the next few days is whether I will start doing things to make me sweat out the Bartonella toxins, or whether I can make it through with just lots of water, tea, and kombucha.

East West

The last two things on my mind are yoga and acupuncture. I had an acupuncture session this week. I felt weak in addition to fatigued. I had reached a point on Tuesday that I didn’t even have an appetite. After my treatment on Wednesday, my appetite came back. Acupuncture seems to help me from falling through the floor, but it is one of those things that doesn’t quite help me get better from the infections, either. So it stays on my list of what to do as things get worse.

I finally made it to the Friday yoga class at the gym. (After two weeks of the teacher cancelling without announcing it, the third week I was too sick to go.) It was good and bad. Some of the work we did on our postures really worked my lateral muscles in my abdomen. I can feel it even more today than I did yesterday. It is that not-too-unpleasant pain that muscles feel when they’ve been worked more than normal.

What didn’t go so well was in one of the poses, the teacher came to adjust my position. She pushed me into a position that made my back seize up on the left side, just above my iliac crest. I told her my body doesn’t go that way and moved back into a less intense position. She said, “Yes, it does,” and pushed my hip again. I had to tell her she was hurting me to get her to back off.

The rest of the class and most of the rest of the day I had pain in a place that used to hurt all the time, from mid-2007 through the beginning of 2014. I was really upset. It dragged me back to the time when I couldn’t walk and all of the subsequent slow progress to try to walk normally again. It took me back to the unmitigated, constant pain I was in. It triggered a lot of hopelessness about ever getting through Bartonella or having a long-term Lyme remission.

Deep breath. Today the pain in my back is gone. I’m not sad to let the gym membership expire and go back to doing yoga on my own as best I can.

Disclaimer

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Red Onions

Monday, April 13, 2015

With the ups and downs of the past week and a half, and a very sleepy woman writing this post, I want to focus on one small but significant breakthrough: red onions.

Red onions aren’t something I eat everyday, nor were they high on the list of foods that I couldn’t eat but incessantly wished for. They are a pleasant treat, a crisp, biting, refreshing addition to a salad or a sandwich. They also triggered reflux when I tried them once last year, after I had reintroduced so many other foods into my diet. Last week, I had dinner on Friday night at a restaurant that makes incredibly scrumptious appetizer salads that come with each meal, salads made from organic vegetables from the farm owned by the people who own the restaurant. I usually take off the red onions. This time, I forgot and ate them. Delicious! But that’s not all: no reflux. The next day I decided to be bold and have some in a sandwich. Equally tasty, still no reflux. Pretty good.

The point of all this is that despite the fact that I’m struggling, and that things are still difficult in many ways, I can see that my body continues to heal and get stronger.

Shifting Focus

I spent much of January through March taking a writing class. My goal is to finish a young adult novel I started before I started using the coil machine. One of the reasons I stopped working on it four years ago was because I couldn’t handle both blogging and writing anything else. There were limitations on my arms and limitations on my concentration.

Much has progressed since then. On most days, I can use my arms at the computer for up to two hours and still use them for other things (cooking, knitting, handwriting something, etc.) on the same day. On most days, I can go for a walk and still do other things (go up and down the stairs, use the computer, etc.) on the same day. On most days, I can do a few different things without my internal battery being so overdrawn that I need to spend the following day in bed.

Some of the change has been getting Babesia into remission. Some of it has been reducing the symptoms and physical stress of the other two infections, Lyme and Bartonella. Some of it comes from increased strength and stamina from occasionally pushing my limits and giving myself recovery time.

So when I came back from my recent trip to see my family on the East Coast, I had lots of things I wanted to do. While I was with them, I was focused on the tasks at hand, overdrawing my reserve energy and wearing myself out. After recovering a little, I’ve wanted to do so much: coiling aggressively for Bartonella, starting exercise again, working on the novel, blogging regularly, cooking, knitting, being social with my friends, getting enough rest and doing basic housekeeping (maybe even cleaning out a cabinet or a closet).

I’m sad to say that the list is way too much for what I can actually handle. In particular, exercise still wears me out so much that I find myself needing to rest and unable to do much else. Cooking and cleaning up after myself becomes impossible. I find I’m too tired to write. Basically, I end up knitting and coiling and resting.

In comparison, when I was taking the writing class, I felt bad that I wasn’t getting out to go for walks frequently enough. But I was able to do more of everything else, and I had a little energy left to wish I could do more.

Last spring and summer I also struggled with exercise. I live in a place where it is so beautiful outside. I want to go out and run free every day. But I can’t. If I want to go out every day, either I have to limit my “exercise” to walking, or I need to find a way to not overdo the other types of exercise I like. I didn’t do that this time. So here are my adventures.

Yoga Breathing

Two Fridays ago, April 3, when I wrote my last post, I went to a yoga class that turned out to be cancelled. However, the room at the gym was available, so I decided to do my own routine for about 45 minutes.

Of course, I overdid the workout. I started out slowly, warming up, then continued with a series of poses that worked the various parts of my body that give me trouble: my shoulders, my hips, my ankles, my balance. I worked my core muscles. I stretched and toned. I felt tired, as expected, afterwards. I desperately wanted to go for a long walk because the weather was beautiful. But I dutifully napped and blogged when I got home.

The next day everything was sore. I woke up lots of muscles that have been out of use with walking as my primary form of exercise. I was cranky from being so sore. But it seemed worth it.

The following two days, I was fine. I went for my normal walks. Even though I had pushed my body, a nap that day followed by one day of rest was good enough.

Water Baby

On Tuesday, April 7, I went for a swim at the gym. It was my first time swimming since I floated around in Hawaii during my honeymoon. It was my first time swimming laps in over a decade. It was fabulous.

I was on the swim team in junior high school. I was never the fastest. I don’t think I ever did better than 3rd place at a meet the entire 3 years I was on the team. But I love the feel of swimming laps. I love going back and forth and listening to my breathing and feeling the water glide past my abdomen while my arms and legs propel me forward. Back in junior high, I swam on weekends. I loved the big pasta dinners my mother served before and after practice and meets. I loved the annual “swim-a-thon” where we asked people to sponsor us a nickle or a dime per lap to pay for the team’s equipment. Back then I could swim 60 to 70 laps in the olympic-sized pool and collect a few bucks from a sheet full of neighbors and relatives the following week.

When I got in and swam my first length of the 1/2 olympic-sized pool at the gym last week, I was transported back in time. I could hear my coach commenting on my strokes. I could hear my breathing that day like an echo of the hours swimming almost three decades ago. I was energized. I didn’t feel the debilitated, exhausted body I’m often trapped in.

So I swam. And swam. And swam.

I swam for way too many laps (16 to be precise), when I should have stopped after completing half of what I did. When I got out, my leg muscles felts like jello. I was in a zombie trance the rest of the night. I was lying down for the night by 8:30 pm.

When I woke up the next morning, a familiar thought popped into my head: enforced rest. This is an idea listed in Dr. Burrascano’s monograph, Advanced Topics in Lyme Disease. It says that exercise should be done every other day while a person is healing from Lyme, with a rest day in between, even if the person wants to do things other than rest. I briefly had the idea that I should make myself rest after such a big swim.

I discovered that I didn’t have to “make myself rest” as soon as I tried to move one of my arms. My muscles were so tired that I felt like there was a sofabed on top of each arm. They felt heavy and impossible to move. My legs were almost as bad. It took me an hour to get out of bed. I ate and showered and coiled and went back to sleep for a nap. I ate and forced myself to get vertical for an appointment with my acupuncturist. When I got home, I ate again and got horizontal until it was time to climb the stairs and coil and get in bed. I was a wreck.

I think the acupuncture gave me temporary pep. I was okay the next morning: no pain, no heaviness in my limbs. I went for my regular walk. But underneath, I think I hadn’t really recovered. I had no attention for writing my book, blogging, cooking or doing much of anything.

Yoga Friends

Friday rolled around again. I was determined to try this yoga class, since I’m a third of the way into my one-month gym membership. I ended up arriving late and hustling to the yoga room.

It was empty.

Hmmm.

I went to the front desk to inquire, thinking I might have gone to the wrong place since it’s my first time attending the class. Nope. Class cancelled. But since there wasn’t a sign in the front alerting gym members, the manager sent a boot camp instructor to lead me through some stretches. Then another member of the class showed up.

I didn’t really want to do boot camp stretches. I wanted to do yoga. I told them to go ahead while I did my own thing on the side. Somehow it got all turned around and I led the three of us through my series of yoga poses for the next 45 minutes. It was strange to lead. I couldn’t call out all the things a yoga teacher would to help people with the poses, I just did my best to give them a clue while doing my practice.

The good thing is that I found out that Friday is usually a restorative yoga class: lots of poses to release tension in the various muscles, tendons and joints. This might be exactly what I need, if the teacher shows up this week.

The bad thing is that I’ve been tired for three days.  Saturday and Sunday, I did moderate (for me) activity: walking around at the farmers’ market and doing some other errands on Saturday, attending a baby shower on Sunday. But I was tired by 6pm both days. I just felt worn out.

Today (Monday), I feel like all this exercise was too much. I feel overcome by fatigue. I spent a lot of the afternoon napping.

Acupuncture

I went for a special request session with my acupuncturist last Wednesday. There is a treatment which involves putting needles in all the back shu points to reset all the meridians at once. In New York, my acupuncturist would do this periodically when my body got very out of whack. I asked my current acupuncturist to try it on me.

The initial effects were usually subtle, with some light-headedness and a mild headache. Then the next day, I’ve often felt many of my symptoms get less intense, with the results lasting for up to a week. When the symptoms came back, they often seemed to be in a different configuration.

This time, I had the woozy feeling and a mild headache. The main difference was that I wasn’t so tired the next day. My nerve pain calmed down a lot until Sunday. That isn’t very long, so I wonder if something else is going on.

The other request I had was to complete the had treatment she started on me at the clinic a month ago. I had pain in all my fingers. The acupuncturist put a needle in the space between my left index and middle fingers. My index finger felt better. It has felt different than all of my other fingers for an entire month, specifically feeling less painful.

I stopped her after one needle the first time because it was so painful that I wanted to shout. I had to ask her to take it out. I didn’t want to scare the other patients, and frankly, I wanted to know if the initial intense pain would pay off enough to make it worth suffering through it for the other fingers. A month later I had my answer and was in a private treatment space.

She put needles between all my fingers and by my thumbs as well. Only the left hand hurt. By the time the treatment was over, the pain in my fingers, pain that I’ve been feeling for months, was gone. I’m almost completely certain that it was nerve pain. And I hope it was, because as of Sunday, I have pain in my hands again, along with slightly swollen knuckles and lots of popping in the joints.

Good treatment. Poor timing.

Symptomatic

For the past few days I’ve been feeling more symptomatic. When I put the symptoms together, they don’t form a picture with a clear source. It could be several different things contributing to me feeling bad. Or it could be one thing that is provoking me. I’m not sure.

First we’ll get a look at the symptoms. I’ve had nerve pain in my upper arms before the acupuncture treatment and returning a few days later, today the pain now extends to both hands. I’ve had tingling in my arms in the mornings and when I wake up at night, though that is diminishing. I’ve had dull aches in the muscles in my arms and legs, accompanied by a feeling of heaviness. As I mentioned above, I’ve been more tired than usual. At night, I had a night heat two nights ago and last night a mild sweat. I sleep a lot, but lightly, waking up two or three times during the night. I’ve been having nightmares, mostly toward the morning. My joints are popping and cracking, mostly in my shoulders and hands, and today also my hips and ankles. I’ve had intermittent headaches, mostly in the afternoon and evening, and occasional light sensitivity during the day. I’ve got a lot of floaters in my eyes; for the past week I see them so clearly that when I look at a light colored wall, they look like insects until I try to focus on them. When I look at other things, a blurry spot appears near each big floater. My skin and joints have been more inflamed, with acne on my face and back and butt, and my knuckles somewhat enlarged. (My wedding ring can get over my knuckle but hurts on the soft tissue when my hands are swollen. But it can’t get over my knuckle when my knuckle is swollen.)

Since I last wrote, I had nerve pain in my hips and going down the outside of my legs. But that has come and gone.

One last symptom, one I always forget to mention, and that leaves me for months at a time, is a hair follicle on one of my right eyelashes, that produces a hard, white secretion. I don’t know which infection it comes from, though these days, I suspect Babesia. It’s been gone for several months and reappeared in a milder form on Sunday morning.

Possible causes:

  • Too much exercise – I drain my reserves and my immune system is slightly suppressed allowing everything to get out of whack, and possibly triggering the chronic infections.
  • Aggressive Bartonella Coiling – I’ve been focusing very strongly on my central nervous system, which usually generates fatigue, nerve problems, floaters, light night sweats, night mares, and can mess up my menstrual cycle.
  • Impending start to next Menstrual Cycle – I have had only fleeting twinges of cramps, so it might be late. However, just prior to and up to a few days after my period, I often have a big flare of multiple symptoms of Lyme and Bartonella infections, and some months I get acne.
  • Babesia Flare Early Warning – Two things made me think of Babesia, the first of which was the day after swimming when could barely move and needed to sleep. One day of fatigue does not equal Babesia, but it happened again today. Having a light night sweat is sometimes an early warning sign, but can only be interpreted by several subsequent nights of increasing sweats. Then there is this eyelash secretion, which comes and goes, but which has been gone since at least November when I hit a turning point against Babesia. Still, I wasn’t paying attention to the eye thing closely enough in the past to be sure it has anything to do with Babesia.

Where do I go with all these symptoms? There’s no clear answer. I’m going to rest for a few days, at least until my next menstrual cycle starts. If that clears things up, then I’ll know what it was. I suspect I’ll have to go easier on the exercise, no matter what. Then I’ll also see if things keep changing as I move through the Bartonella coiling. But if the lie-down-all-day fatigue persists, I’ll have to try coiling for Babesia again.

Disclaimer

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Independence and Interdependence

Tuesday, March 31, 2015

Independence

I’ve just returned from a trip to the East Coast. It was a fun and tiring trip. I spent the first week in Virginia with my sister and her family. We celebrated my nephew’s 4th birthday with a party of his friends and their families at a private airport with a public diner. One of the pilots who keeps his plane in an on-site hangar had small planes that were the right size for 4-year-old children to pedal around in. The pilot also let us sit in the plane he built. It was a fun day.

Plane adventure That was just one of the many things we did during my trip. I spent a lot of time playing with my niece and nephew. They had me wrapped around their little fingers, getting me to tell them stories, make faces, give them stinky things to smell (my supplements!), carry them around and do all sorts of other nonsense that made them, and me, giggle.

From there, I got on a train to NYC: a 7+ hour journey. It was an unanticipated extension of my trip, added on only a day before I left California. My father ended up in the hospital with a minor problem that was fixed by changing his blood pressure medication. But like all hospital stays for the elderly, it made him weak from not being able to walk around for five days. By the time I got there, he was in a rehab facility, building up his leg muscles again. He’s doing quite well. In fact, he is more alert and vibrant than he was when I last saw him at Christmas.

The big part of this trip for me was that I did a lot on my own. I took a flight that required a lay-over with a hike across the airport in Charlotte. I joked with another passenger that getting from one terminal to another was like training for a half marathon. Yet, I was able to walk it without assistance. I felt pretty tired after the trip, but I wasn’t worn to the bone, the way I’ve been in the past.

The train ride was another part of the trip that had a momentous quality to it. I took the train from MetroPark, NJ in 2007, when I was on my steep decline. I had to get assistance onto the train and off at Penn Station, where I got assistance to get in a cab. I was weak and woozy. At the time, it felt like quite an accomplishment to go anywhere. I was still in denial about how bad things were getting, with progressive weakness and weight loss, and coupled with increasing pain and and reduced neurological control. I was a mess but I was fighting it.

This time, I took the train for a much longer distance. I waved at MetroPark as we left the station. I took a subway train to Jackson Heights and walked to my parents’ apartment. It wasn’t all perfect, I had some problems being in the subway (which I’ll explore in the next post), but I could manage it. Then after resting for a bit and having dinner with my mother, I was able to walk to see my father at the rehab center six blocks away.

I felt triumphant and independent. This was the first time in eight years that I felt more like my mother’s equal, helping her at least as much as she was helping me.

Interdependence

On a totally separate topic, I had some time to think while I was away. I didn’t do much else for myself, instead letting myself go swimming in the lives of my family members. In the quiet moments, I thought about the neurological infection that has been my experience of Bartonella.

One of my goals in blogging about my experience with a coil machine is to separate out the symptoms that are associated with each of the infections I have. I like to have lists of the body systems affected by each infection with the corresponding symptoms, as well as a clear description of the herx that results from killing each infection.

In many ways, I have been successful. Then I get stumped by certain overlapping symptoms, ones that seem to be triggered by multiple infections. Examples include the joint problems in my left shoulder, the pain in my hands (that feels like it’s in my joints, but might be neurological in nature), and the innumerable bowel symptoms.

I stopped taking co-enzyme Q-10 at the beginning of the trip. I expected to have some Bartonella symptoms, but what I got was a combination of Bartonella and Lyme symptoms. I was more tired and felt a lot more pain and cardiac symptoms than I expected. It was rough. (More on this experience in the next post.)

What it made me realize is that the two infections might not, in fact, operate independently of each other. As I was thinking about this idea, that when the Lyme gets more active it might trigger Bartonella activity, or vice versa, I came upon an article about Babesia. The conclusion of a recent study is that ticks are more likely to acquire Babesia when feeding upon a rodent that has both Babesia and Lyme infections than when feeding upon a rodent that has only a Babesia infection.

It made me wonder if what I see as I reduce the load of Bartonella is a resurgence of Lyme, that by peeling back a layer of one infection, I might then expose another layer of the other infection. When I consider that possibility, I feel less concerned about additional relapses of Lyme (and, frankly, Babesia) while I’m whittling away at the Bartonella infection.

I’m not sure of the exact synergies of the three infections. I know that having all three run out of control in my body made me incredibly ill and unable to do much of anything. I know, also, that it has been very difficult to get any one of them into a permanent remission. I sometimes feel like I’m playing whack-a-mole, with old symptoms reappearing when I get other symptoms under control.

All in all, however, I’ve made a lot of progress. I’m able to do more than before. I’m not out of the woods. I have not conquered the infections to the point where I could call myself asymptomatic. But I’ve regained a certain amount of independence. In fact, I’ve gained enough strength and wherewithal that my family can now depend on me just as much as I depend on them.

Disclaimer

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Bring on the Funk

Friday, February 6, 2015

About two weeks ago, I started coiling again. I have to say that I really liked taking a break while I’m at home. The days are so long. I can do lots of things. I feel freer. And mostly, I can imagine what it will be like when I no longer have to coil (or at least coil regularly).

There were some downsides. The last week in January, I could feel the seasonal Lyme flare starting. It was very mild compared to previous years. At the same time, the Bartonella symptoms were popping up, a little at a time, even with the Chinese herb formula. Some really strange symptoms popped up, things that used to happen to me, long ago, that made me think I was crazy and everyone else think I was a hypochondriac: an itchy rash on the tops of my feet when I got out of the shower (lasted about 40 minutes) and a spasm in a muscle on the front, right side of my neck that constricted my throat and made it hard to swallow. (Thank goodness my acupuncturist knew what to do!) I still have some nasal congestion and post-nasal drip from the respiratory infection I acquired in December.

All this is to say that my body still offered plenty of unpleasant distractions, but it was minor compared to the past eight years. And I wasn’t even coiling! Kind of nice.

I knew it was temporary and that I would have to go back to coiling before the infections got the better of me.

I started up again for real on January 26, with a Lyme coiling session. The next 4 days, I did a test run on Babesia to see if any of the Bartonella symptoms might in fact be from Bartonella. (A wonderful negative result on that test.) Then I began the Bartonella coiling in earnest. I have since been feeling worse. Much worse. This first week, the symptoms keep changing from day to day, but they are already slowing me down. I guess pain does that.

Lyme Flare

This year marks my fourth Lyme flare. The first two flares, in 2012 and 2013, were pretty bad. I felt like I got hit by a truck. They took several months of coiling to resolve. Last year and this year, they have been minor. (There was none in 2011 or before because the Lyme was already pretty active, so I didn’t really notice an increase in symptoms.)

This year the Lyme flare started with some joint popping, worst in my left jaw joint (TMJ), and pain in my ribs. I coiled right off the bat. It made the joint popping louder but less painful. I had some very sleepy days and nights.

It hit me a second time, with severe pain on the left side of my sacrum, in my left hip and down my left leg. It was a little scary because I had a hard time going up and down the stairs. However, the morning after the second coiling session, the whole episode was over. In terms of herxing, the second coiling session gave me pain down my paraspinal muscles and a case of Lyme-smelling urine. But the worse seems to be over. I’m trying to convince myself to coil every third day for the next several weeks, just to really be sure there aren’t any active Lyme bacteria floating around. Maybe I’ll do that, or maybe I’ll do it every fourth day. Either way, other than the TMJ which also gets triggered by the Bartonella infection, the Lyme symptoms are gone, so I feel relieved.

I don’t think I’ve posted the Lyme coiling protocol since I last modified it. Here it is.

Draft Lyme Coiling Protocol

432 Hz

Total of 110 minutes

  • Head: each side, top, back – 5 minutes per
  • Spine: upper, middle, lower – 5 minutes per
  • Abdomen, Liver, Spleen (including left kidney) – 5 minutes per
  • Chest, Right Kidney, Lower Abdomen (over pubic bone) – 3 minutes per
  • Between Legs: thighs, knees, calves – 3 minutes per
  • Feet through coil – 3 minutes
  • Shoulder Knobs – 3 minutes
  • Each side of Ribcage – 3 minutes
  • Each Hip Bursa – 3 minutes
  • Each Ilium Front, Each Ilium Back – 3 minutes per
  • Each Butt Cheek (to get the Iliac Crest and the Femoral Head) – 3 minutes per
  • Sitbones (or underside of buttocks, while lying on my stomach) – 3 minutes

Babesia Test Run

There were a few symptoms I was getting sporadically that I thought were too close to Babesia symptoms to take any chances. I learned my lesson in 2014: Babesia is my most disabling infection at this point. Better to lose a week of Bartonella coiling than to end up in bed for weeks at a time…again.

The symptoms I was concerned with were an occasional, light, night sweat. Usually, I woke up hot and barely damp, which seems like Bartonella, but can also happen at the beginning of a Babesia flare. I had some fleeting headaches, with some light sensitivity. They weren’t too intense, like Babesia, but again the headaches could be attributable to either infection. I also had a few days of getting really tired early in the afternoon. That is not quite like Babesia, but fatigue generates a big warning message in my mind.

So I coiled the full Babesia protocol, using both 570Hz and 753Hz three times a day, for 4 days. I figured two days wasn’t enough for me to be sure, especially if the load of protozoa was low. I was looking for more symptoms, the symptoms I’d been having to go away, or for the symptoms I was having to get worse.

Here’s what happened: I had one headache in the four days. Same intensity and duration as before. I had one sweat on the third day when I woke up in the morning. I was pretty overheated (so was my husband, incidentally, because the weather overnight had gotten warmer) and only a little damp. And I was tired for one afternoon.

Basically, coiling for Babesia had no effect on my symptoms. I consider this to be a negative test.

Just for the record, this is the protocol I used, which I changed a few days after I posted the last version of the protocol.

Babesia Protocol

570Hz followed by 753Hz at each session

Morning (19 minutes total)

  • each shoulder blade – 1 minute
  • spine: upper, middle, lower – 1 minute each
  • each ilium back/side – 1 minute
  • each ilium back/central/upper buttock – 1 minute
  • spleen – 5 minutes
  • right kidney – 5 minutes

Afternoon (19 minutes total)

  • between legs: thighs, knees, calves – 1 minute each
  • feet through coil – 1 minute
  • each ilium front – 1 minute
  • each hip bursa – 1 minute
  • lower abdomen/pubic bone – 1 minute
  • heart/chest – 5 minutes
  • abdomen – 5 minutes

Night (18 minutes total)

  • head: each side, top, back – 1 minute each
  • each shoulder knob – 1 minute
  • each ribcage side/arm – 1 minute
  • liver – 10 minutes

Bartonella Begins

Let’s just say I was procrastinating. I didn’t want to start coiling for Bartonella. I tried to convince myself that I could wait until I finished the Chinese herb formula that I was taking to prep my body for the herxes. I couldn’t hold out. My arms were getting tingly too often. My feet were starting to tingle in the morning. The headaches weren’t going away. I started to feel like my nerves were on edge or oversensitive and my hands and wrists began to hurt. I knew it was time to get started.

The first day of coiling was February 1, Superbowl Sunday. I never used to watch football. I didn’t even watch much of the game (just the last 4 minutes when my husband was getting riled up), but I stayed by the tv, knitting and watching the commercials. Before we started watching the game, I coiled the back of my head for 6 minutes, and my abdomen and chest for 5 minutes each. During the game, I cried during the Always commercial. I cried about it again after the game when we were talking about the commercial (and why I liked how it challenged sexism targeted at girls during a hypermasculine television program) and again when I looked at the longer version of the segment on YouTube. I then broke out in waterworks when I read the script for the domestic violence psa (even though I thought it was not the right message for this context, but I guess low expectations are appropriate when it comes to the NFL’s understanding of the issue).

I’m not against crying, per se, but my reaction to these videos was way over the top. It was the beginning of the Bartonella herx. It was completely emotional, no physical symptoms.

The next day, I coiled my entire body. That gave me pain in my sacrum the same day and kept me up at night from the pain. Since then I’ve been a little achy. I skipped a day to do Lyme. Then I coiled again. At this point it became clear that when I coil the right side of my head, it provokes a headache. I guess that’s where the Bartonella infection is active right now.

It seems like I’ve stirred things up. My ears hurt, my head aches, my jaw hurts on both sides–worse on the right, my shoulders ache, my back hurts, my feet hurt in the morning–worse and worse each day, my hands hurt during the day, and I’m tingly in all my limbs. It is definitely Bartonella time.

My temperature regulation has been off-line. I was cold for a few days. I went for a walk for 45 minutes and got myself hot. Then I stayed overheated for 36 hours. Now I’m cold again, especially in my hands and feet, and with a general feeling of being chilled.

I’m also having my own very strange Bartonella symptom. I want to put my arms over my head when I lie down. I just can’t stand having them by my sides. It’s crazy because my arms get cold at night if they aren’t under the covers. It also makes the tingling in my arms worse. I fight it, but I have to keep remembering to put my arms down.

I finished the Chinese herbs yesterday morning. By afternoon, I started having moderate kidney pain. I think the herbs have helped reduce the kidney pain and the constipation I usually get with Bartonella herxes. I expect things to get worse heading forward.

I don’t have my whole detox routine set up just yet. I’m still working it out. Of course, I’m more motivated when the symptoms get worse. So there is more to add than what I’m doing so far: chanca piedra pills, kombucha, lots of water.

Finally, the usual emotional stuff is starting to pick up. I feel more gloomy. Or rather, I feel more gloomy in between the moments when I’m happy with my life. Having my pain level go up makes it worse. Living in a beautiful place tempers the difficulties.

Bartonella is a funky infection to treat. I don’t like it at all. I’m holding on to the fact that I have been through this before and I’ve had significant improvements each time I’ve coiled for Bartonella aggressively and consistently.

The coiling plan, by the way, has shifted since this time last year. I’m doing the back of my head less, but still a lot. Somehow, I’m surprised when I look back and see that I coiled the back of my head for 8 minutes three times a day (24 minutes total, daily). That seems like quite a lot. It may be responsible for the dent I made in the neurological symptoms which haven’t gotten as bad as they used to be, even though I coiled very little for Bartonella all autumn, and I didn’t coil for Bartonella from December 15 to February 1. That’s the longest Bartonella coiling break since I started in 2011.

Anyway, the coiling protocol is in flux with daily modifications. I’m trying to respond to the more noticeable symptoms on my head, neck and shoulder area with extra coiling. This current draft is the most recent version and is subject to change in the very near future.

Bartonella Coiling Protocol

Draft 11

831 Hz (93 minutes total)

Morning (49 minutes total)

  • back of head – 6 minutes
  • abdomen – 5 minutes
  • chest – 5 minutes
  • liver – 5 minutes
  • sacrum – 5 minutes
  • each shoulder knob – 4 minutes
  • head: each side, top -2 minutes per
  • upper and middle spine – 2 minutes per
  • each ilium front, each hip bursa, pubic bone – 1 minute per

Evening (44 minutes total)

  • back of head – 6 minutes
  • spleen/left kidney – 5 minutes
  • right kidney – 5 minutes
  • sacrum – 5 minutes
  • each shoulder knob – 3 minutes
  • head: each side, top – 2 minutes per
  • between legs: thighs, knees, calves – 1 minute per
  • feet through coil – 1 minute
  • each side of rib cage – 1 minute
  • each ilium back, each butt cheek, sitbones – 1 minute per

As usual, I’m tackling Bartonella with a mixture of trepidation and hopefulness. Mostly, at this point, I just want to find an ending. I want to go back to the six weeks of living with few symptoms (though none would be infinitely preferable). But as I remind myself each time I know things are going to get worse: the only way out is through. So bring on the healing. Bring on the Bartonella herx. Bring on the funk.

Disclaimer

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