Posts Tagged ‘babesia’

h1

Vacation Notes

Wednesday, July 29, 2015

Over the last two weeks, I’ve gone camping in Yosemite and had a friend visiting my home. It’s been busy, busy, busy. Later this week, I head to NYC then onto Virginia, rounding out a month of activity. I’m mostly holding up okay. I haven’t tried to do activities for this long without taking a serious rest break, at least not in the past eight years. I can tell I’m tired and running on my reserves. I’m hoping that I’ll somehow make it through.

Babesia

When I last blogged, I had just realized that my fatigue was a Babesia flare. Unfortunately, I didn’t have three open weeks to coil three times a day with two different frequencies. I did something else instead. I coiled three times a day at 753Hz for a few days. Then I coiled the whole body protocol (requiring the use of three coils) once a day, while also coiling for Bartonella once a day. I mixed it up and did part of the Babesia protocol in the morning and part in the evening, splitting the Bartonella protocol in half as well.

I can’t say I’m for sure in remission. The symptoms disappeared. The fatigue hasn’t come back yet. On the hiking trip, my energy was pretty good. We did low-key activities for the first four days and went on hikes the last two days. I was able to keep up with the other folks on the trip. The hiking wore me out, but it did that to everyone. I had night sweats, but so did my companions because it was cold when we went to sleep in super warm sleeping bags, then warmed up overnight. So I’m not counting those night sweats as caused by Babesia.

After the camping trip, I coiled for Babesia two days, then missed four days, then I’ll get to do it two more times before I leave for the trip east. I’ve had no herx at all, no headaches, no night sweats. I believe this will be enough as long as I don’t overdo my activities or provoke the infection with too much sugar.

Sleep

Getting enough restful sleep has been the biggest issue I’ve been facing. I wake up often at night. I sleep lightly. In order to stop this pattern, I need to have big naps for a few days in a row, and I need to coil for Bartonella aggressively for at least a week. Since that can’t happen, I’m doing my best to rest in bed and sleep as much as I can.

I got into this mess when we were camping. I hate getting up to pee in the middle of the night when I’m camping. I have to find my headlamp, get dressed, leave the tent, walk across the campground, use the pit toilet, walk back (and stare at the millions of beautiful stars), find the hand sanitizer, get back in the tent, get undressed, and get back in my sleeping bag. By the time I’ve done all this, I’m wide awake and a little cold. Yet for the first three nights of camping, this is exactly what I did. It took me at least an hour to fall asleep again each night.

My best shot at sleeping through the night was to stop drinking three hours before bed, stay up till 10:30, and go to the pit toilet right before I went to sleep. It helped if I lay down for awhile, maybe at 10, to trick my kidneys into thinking it was time to go crazy, which is what they usually do when I go to bed for the night. It worked. I was able to hold it until 5:45am. I woke up during the night, but I was able to put off getting up. The only problem with this scenario is that I couldn’t go back to sleep at 6am. However, it was fun to watch the early birds eating worms and other insects in the grass. I got to watch the sun come up over the mountains and the shadow of the mountains recede.

The biggest problem was that my body went into overdrive. I couldn’t nap. I couldn’t settle down and be still, not even sitting. I felt like I needed something to do at all times because my mind was so restless. I reached a point of tired overdrive where I kept apologizing for everything (to the point that my companions were confused about what I was apologizing for). My brain had short-circuited.

I managed to rest some when I got home. It wasn’t quite enough before another friend came to visit. We had lots of activities planned, all starting early in the morning. I feel the sleep deficit. I’m not sure if I can do anything about it.

Lyme

Sugar activates Lyme. There’s no way around it. Eating two bags of M&Ms is one way to get lots of sugar. That’s what I did on the drive back from Yosemite. The next morning I woke up with knee pain. It was excruciating. I got really worried. That day I did a full-body Lyme coiling session. Overnight, with 11 hours sleep, the pain was gone.

I had some knee pain yesterday morning (over a week later) the day after a Lyme coiling session. I don’t know if it is a herx or if it is the kind of knee pain I get with Bartonella. I coiled for Bartonella yesterday. This morning, the pain was gone.

Fun Stuff

Camping in Yosemite is fantastic. We actually stayed at Tioga Lake, near the park, and did day trips from there. I have a new camera from this past Christmas. I had a fabulous time taking photos of birds and flowers and scenery. The photos are posted here.

Setting up the tent at Tioga Lake with Joe.

Setting up the tent at Tioga Lake with Joe.

On the Friday of the trip, we hiked up to May Lake. I was tired from a shorter hike on flat land earlier in the day. I took my time, took pictures, and slowly made my way up the mountain. At the top, May Lake was beautiful. I was hot. The lake looked so tempting. As happened last year, I had no bathing suit with me. This time, my husband and I walked to the far side of the lake, away from where we were visible. He was hiking in his bathing suit. But I decided to go skinny dipping. It was a short refreshing dip in the freezing cold lake, followed by a few minutes drying off in the sun on some rocks. Fabulous. For quite a while afterwards, I couldn’t believe that I became that girl, the one who goes skinny dipping in broad daylight. It was fun to see myself that way, instead of the images of a woman struggling with her health that I’ve had for the past eight years.

I took lots of photos, including some at Bodie, the abandoned mining town.

I took lots of photos, including some at Bodie, the abandoned mining town.

The other excitement when I came back was the Gilroy Garlic Festival. I wouldn’t even consider it when I moved to California. Now, after lots of coiling, and more coiling as I reintroduced various foods that used to trigger massive inflammation, I can eat garlic. That’s exactly what I did. Lots of it.

At the Gilroy Garlic Festival with Mr. Garlic

At the Gilroy Garlic Festival with Mr. Garlic

After I was garlic saturated, my friend and I went to the arena where several celebrity and professional chefs were doing demonstrations. We watched a few chefs. In between each chef, while the stage was cleaned and prepped for the next one, an MC brought people up from the audience to show off their “talents” and win garlic and other food gifts. I sat through the jugglers, the Elmo impersonator, the teenager who did a split, the thumb-wrestler and a few others. Then I got it in my head to get on stage. I offered to recite a poem about a duck. This let the MC make a lot of comments about what rhymes with duck and what could be said at a family-friendly event. I recited Ogden Nash’s The Duck. It was silly. I got some applause and some pickled garlic. Mostly, though, I was that girl, the one who does embarrassing things and can laugh at herself. I feel like I’m starting to re-enter the world.

Looking Ahead

In just over two weeks, I’ll return to California. I’m looking forward to coiling and making major progress. I really, really, really want to be well. It’s so close I can almost taste it (if I could get the taste of garlic out of my mouth…).

Disclaimer

h1

Stealth Symptoms

Sunday, July 12, 2015

As soon as I finished writing last week’s blog post, I knew I had to coil for Babesia. It’s funny how writing about my experience, as this blog is literally my journal of coiling, clarifies my thinking about what to do next. (This is why I tell everyone who asks me for advice that the most important thing is to keep records of whatever treatments they decide to use.)

This is not the first time I’ve resisted coiling for Babesia. I think that my early experience with Babesia and coiling was that once I got the infection into remission, it stayed in remission for eight months. The second time, it stayed in remission for 11 months. As a result, I’m reluctant to admit that it might flare up after recently treating it.

There is a big difference between the more recent, more frequent flares and the long periods of remission. I stayed in remission previously by keeping to a very strict diet, taking supplements, not pushing my body with exercise, and getting tons of rest, while I attempted to get the other infections under control. That was fine for where I was in my healing process. Now, as I get stronger, I intentionally push boundaries and trigger symptom flares from the Bartonella and Lyme infections, allowing me to dig deeper into their reserves and more fully rid myself of the infections.

Yet I maintain a blind spot for Babesia. To my thinking over the past year, Babesia, which requires a lot of daily coiling to get rid of the active infection, is a distraction from the coiling I need to do to get the Bartonella infection into its first remission. Thus, I procrastinate and postpone. I try to convince myself that the fatigue and brain fog is anything else, preferably Bartonella, and definitely not Babesia.

I’ve observed, time and again, that my weak link is eating eggs. That invariable triggers all three illnesses, yet each time, Babesia is slower to emerge and the symptoms are weakening. Thus, each time I trigger the infections with eggs, I try again to pretend that Babesia wasn’t triggered. And again, I discover that it was.

So, for the past six days, I’ve been treating Babesia, again.

Stealth Symptoms

I used to have a simple list of symptoms that were my clue that I was having a Babesia flare:

  • light sensitivity which provoked
  • daily blinding headaches in my eyes and forehead and migraines,
  • a drop in blood pressure which led to
  • cardiac symptoms, including palpitations, a strange sensation in my neck and mild chest pain
  • as well as feeling out of breath
  • and sometimes nausea from the low blood pressure.

The big clue was

  • massive night sweats from which I woke up drenched and cold.

Even without these symptoms, I always do a coiling test-run for Babesia if I find myself

  • tired enough to spend three days on the couch or in bed.

So to summarize: light sensitivity, headaches, cardiac symptoms, big night sweats, and bed-bound fatigue. The symptoms usually came together over the course of a week. I might resist coiling for a few days beyond that week, but I would come around and start to feel better after a day or two of coiling.

The symptoms have changed. I attribute this to either a lower load of Babesia microbes in my body, or a stronger body from having reduced the loads of Lyme and Bartonella bacteria. Or both. No matter what the reason, the symptoms are harder to recognize. Gone are the extreme headaches, light sensitivity, blood pressure changes, and cardiac symptoms. Instead, I’m left with fatigue that comes and goes, and light night sweats that are just like Bartonella night sweats. So how do I know when to coil for Babesia?

The clue this time was that I couldn’t stop thinking about how tired I felt. I could get up and do things, but all I could think about was how tired I felt. Constantly.

In the shower: “Wow, I feel tired. I wonder if I have time for a nap.”

While driving: “Boy, am I tired. How soon can I go home and rest?”

While coiling: “A series of 5 minute naps in between changing the position of the coil sounds like a great idea!”

While talking on the phone: “This conversation would be a lot more interesting if I were lying on the couch.”

While eating: “I’d better not eat too much. It’s hard to take a nap on a full stomach.”

While blogging: “Why did I write down so many notes? I want to be done already so I can rest.”

You get the point. I was too tired to go for walks or do yoga. I was getting noticeably sedentary, even for me. This was a big change from the progress I’d been making as I coiled the Bartonella infection, even after the sugar binge and egg trigger. I knew something was up.

When I talked to a fellow user of a coil machine, he offered me some other possible frequencies. When I thought about them, I knew that I should try coiling for Babesia before I start chasing other phantom infections. But it took writing about the fatigue last Monday to put the thought into action.

Overnight Breakthrough

Last Monday night, I coiled my entire body for Babesia using 753Hz. I’ve finally come around to that frequency because I feel better with less herxing. In fact, there was no herx that night, but the next morning, I went for several hours without thinking about how tired I was.

Since it was a test run, I spent Tuesday coiling for Bartonella, my main project. When the fatigue returned, it was already 6pm, even though my energy had waned a little starting several hours earlier. At that point, I knew that I needed to incorporate Babesia coiling back into the week’s schedule.

On Wednesday, I split the full body Babesia protocol into the usual three sessions, giving me several shots to clean up my blood supply. I coiled at both 570Hz and 753Hz.  I also split the CNS coiling protocol for Bartonella into three parts to allow me to finish it over the course of the day. After the first coiling session in the morning, I was downright energetic. After the second one, I had a typical, extreme, Babesia headache. It started in the front and triggered its own migraine. I decided some caffeine was in order, trying to prevent this headache from stretching on for days. An hour later the headache was gone. After the third coiling session in the evening, I had another one of these headaches. I went straight to bed and had a night sweat. But in the morning, I felt like I was back to normal.

On Thursday, I did the same routine: three sessions, both Babesia frequencies plus Bartonella. This time, no headache. Yay! Mild night sweat. No more fatigue thoughts or fatigue, until I wore myself out with too much activity.

The only problem on Thursday was that I woke up achy all over. So Friday, I switched up the coiling and just focused on Lyme. Now the aches and pains have died down.

Meanwhile, I’m having only very mild Bartonella herx symptoms: mild kidney pain, knee pain, neuropathy in my arms and hands when I wake up in the morning.

Summer Activities

On Friday night, my first summer visitor arrived. We’re going camping tomorrow for a week. Then when she leaves, another guest arrives for a local festival. After that, I head to NYC to help my parents move to my sister’s neighborhood. It will be more than a month before I’m back home and resuming my full coiling program.

Yesterday (Saturday) and today, I’m coiling for Bartonella in the morning, spending the day with my friend, and coiling for Babesia (753Hz) in the evening. With any luck, this flare was so mild that I won’t have repercussions while I’m camping.

In some ways, it’s surprising that I’ve gotten this well that I can do so many things in a row. And in other ways, it’s frustrating that I haven’t gotten to the end of any of the infections. This is my life, with its limitations and its adventures. I’m glad to be living it.

Endnote: On Punctuation

As I reread this post, I discovered a lot of colons, many more than I usually employ. I attribute this phenomenon to reading Gulp by Mary Roach while coiling. It’s a great book for learning odd and wonderful and terrible bits and pieces of information about the human digestive tract. It also spends a lot of time on intestines, including, of course, the colon. Thus, the colon is on my mind and has found a creative means of expression.

Disclaimer

h1

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

h1

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

h1

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

h1

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

h1

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

Follow

Get every new post delivered to your Inbox.

Join 319 other followers