Posts Tagged ‘babesia’

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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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Fabulously 40

Monday, January 26, 2015

Forty years old. It’s an accomplishment. When I was in my 20s, 40 seemed old. In my 30s, my outlook started to change. For a few years in my early 30s, I wasn’t sure if I’d live to see 40. A review of my thirties might explain why I feel more triumphant about surviving than disappointed at what I haven’t accomplished yet (which some of my friends have expressed as they turned 40).

When I turned 30, I was excited to be moving back to NYC. My birthday party was blanketed with a blizzard that prevented some friends from coming and almost caused a cancellation of the party itself. I tried not to see it as a sign. By the time I was 32 1/2, I couldn’t walk, had a mysterious illness, was in an incredible amount of pain, and had no clue what was wrong. I wasn’t sure if I’d be back at work in a month or on my way to the grave. By 35, I knew I had Lyme Disease and some other tick-borne infections, I was taking loads of antibiotics, anti-fungals, and anti-malarials. I still felt incredibly sick. I wasn’t sure if I would ever be able-bodied again, but at least I was no longer acutely afraid of dying. When I was 37 1/2, I got married. It was an unexpected turn in my life. It was also around the time that things looking up, for real. Now, at 40, it seems like I might get my life back.

I started coiling when I was 36. If I had known what it would be like, I would have started much sooner. I don’t think that coiling has fixed everything. It might still fix quite a few more of the physical problems I have. But it has changed the trajectory my health and my life were on.

Now, at 40, the battle isn’t over. I still have one major infection to conquer. Victory seems possible. I’m not perfectly well. I wish I was. I haven’t reached a full and obvious remission of Lyme and Babesia. But I know what to do to get the symptoms to go away within a few days or a few weeks. That’s quite a feat. It’s quite a change from the fear I had of never getting better or the weeks and months of suffering with no end it sight. So the battle isn’t over. But I no longer feel like I’m losing.

Celebrating 40

I’ve announced to everyone I’ve spoken to that I’m celebrating all year long. Practically speaking, I’m doing the things I most love and planning to enjoy every moment. I’ve started a writing class online to work on a pet project that I’d like to see published someday. I plan to see my family a few times this year. Anyone I know who wants to visit me will find a free room to stay as long as they like.

The celebration has a theme, “What am I waiting for?” This is a big shift in how things have been for the last decade. I’ve had so many limitations on my energy, attention span, and physical abilities, that I’ve often had to postpone what I want to do until I give up on so many of those things. The things I’m thinking of include little ones, like calling a friend I miss, or big ones, like finishing the novel that I’m now working on in the class (or the Coiling for Lyme book!). Now, when I think of something I want to do, I start on it right away, rather than delegating it to a list to consider later in the context of everything I think I need to do. This is a work in progress. I still have limits to my time and energy and attention span. But I’m spending less time on lists and more time on action.

The celebration for my birthday included a wonderful Sunday on the the actual date I hit 40. I bought a party shirt at the local thrift store in the morning. I Skyped with my parents and my sister’s family. I went for a walk in Pacific Grove, right on the water. I ate delicious food on Monterey Wharf. I wrote a scene for my novel when I got home. I ended the night with an episode of Downton Abbey. It was so enjoyable.

I was able to enjoy it even more because I wasn’t in pain. I was cold. I still have the never ending respiratory infection. But that was nothing compared to the previous 10 years.

Ai Weiwei's exhibit at Alcatraz, @Large. The floor is covered with portraits of political prisoners crafted with Legos.

Ai Weiwei’s exhibit at Alcatraz, @Large. The floor is covered with portraits of political prisoners crafted with Legos.

The celebration continued the following Thursday. My husband and I went to San Francisco. We relaxed during the day. I met my good friends for dinner. Some of us stayed for a live performance by Sergio Mendes at the restaurant. The audience was invited to dance during the last three numbers. The next day we went to Alcatraz to visit the island and to see Ai Weiwei’s exhibit. It was moving and opened my mind in so many ways. More good food and an early night. Saturday, we went to the Marine Mammal Center, a hospital for pinnipeds. Another eye-opening experience. More good food, including homemade, eggless, almond gelato, topped off the day. Sunday I went for a bike ride (with some walking breaks to go uphill) and watched Downton Abbey. A pleasurable several days that make me feel like I’ve moved to paradise. My life isn’t perfect, but life is so much better than I imagined it could be during the terrible years.

View of the Golden Gate Bridge from Alcatraz

View of the Golden Gate Bridge from Alcatraz

Chinese Medicine

For the last ten days, I’ve been taking a Chinese herbal formula. It isn’t specifically for Lyme. In fact, I think the description I understood was a formula for illnesses that go on and on and relapse. There are some other herbs added to the basic formula that address the organs that are most damaged by Bartonella (kidneys, liver, heart). So far, the formula has made me herx for Bartonella, but the herx isn’t as intense as the herx I get from coiling. I have some kidney pain, worse some days, less others. I’m having a minor acne outbreak on my butt (as expected). I have intermittent constipation. And I’ve had some short, moderate headaches at night. I will finish this course of herbal treatment in another 10 days. By then, I’ll have started coiling for Bartonella.

I’ve also gone to an acupuncture clinic to try to get rid of the respiratory symptoms. It was rather humorous to hear the acupuncturist say that I should avoid cold, damp and wind…the day before I left for San Francisco! In fact, the way I would describe normal San Francisco weather is cold, damp and windy. Somehow, by the magic of global warming, the weather was dry, moderate and sunny. There was wind, but not so much.

The acupuncture has helped the symptoms diminish, but I haven’t crossed the finish line yet. I don’t even think I have and infection anymore. I just have leftover inflammation in my trachea. Meanwhile, I have a new symptom, the kind of crazy symptom I associate with tick-borne infections. I have a spasm in my neck/throat, on the right side, in the front. It is so painful. Advil helps take the edge off, but it doesn’t get rid of the pain or difficulty swallowing.

I expect to go for another treatment or a few this week to deal with these last two issues.

Coiling

I haven’t completely stopped coiling. I’ve been coiling for Lyme once a week, on Mondays, for the past three weeks. I’m barely symptomatic. Really, the only thing I feel is a pain in my ribcage on the right side. That’s my harbinger of the Lyme infection becoming active. So I’m coiling. I’ve been expecting a return of symptoms at the end of the month. The last few days of January for the past few years have been when I get a big flare. So far, I only have the rib pain, at least in terms of Lyme symptoms.

I suspect that things might get a little worse this week. I’m prepared to coil twice a week for a while until everything calms down again.

Meanwhile, I have a fear that I didn’t completely vanquish the Babesia. I have hints. They are only hints, because they could easily be Bartonella symptoms. Fleeting light and sound sensitivity. A headache or two. Some heart discomfort.

What I think I should do, starting tomorrow and for a week, is to go back to the Babesia coiling protocol I used in the fall. If I get no herx, and the symptom frequency, intensity, and duration don’t change, I’ll stop there. If I get a herx, then I’ll have a lot of coiling to do in February.

I can tell I’m procrastinating from starting the Bartonella coiling. I just don’t want to deal with the herx it causes. In fact, it’s been nice not coiling everyday. I have so much more free time. Oh well. As I often say, the only way out is through. So I’m gearing myself up to go through again. This time I get to do it knowing that things get so much better when I coil. I no longer question whether I’ll get better. My question has become, How long till I reach the end?

We’ll see.

Disclaimer

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2015: The Year of Bartonella

Wednesday, January 7, 2015

I’ve recently returned from a Christmas trip to visit my sister’s family. As usual, the visits are markers of how much I’ve healed. This time, I carried my almost 40 lb. nephew up and down the stairs. I remember when he was an infant, 3 1/2 years ago, I struggled to climb the stairs on my own. I was so unstable on my feet, I was afraid to carry him around the house. Now we play and rough house, I pick up both him and his younger sister. It was a beautiful moment, when I had carried him to the top of the stairs, to stop for a moment and realize how much I’ve ascended in this time.

I'm in the back, with my sister and her children. My nephew is wearing a sweater I made for him, my neice, a hat.

I’m in the back, with my sister and her children. My nephew is wearing a sweater I made for him, my neice, a hat I made for her.

I have a few ideas for today. First, I want to share what I’ve been up to for the past month, since I haven’t posted an update for way too long. (I feel “blog-stipated”!) Then I’ll do a review of what I thought I was going to do in 2014 and compare it to what actually happened. Finally, I’ll share my plan for 2015.

December

The first week in December was towards the end of my concentrated Babesia protocol (which I’ve written about in the past few posts). I had a few last, mild symptoms: a visual aura that lasted about a minute, one last day of total exhaustion. By the second week, I didn’t have any more Babesia symptoms that don’t also overlap with the other infections. My energy was really good. In fact, the reason I didn’t blog was because I was so focused on doing things in preparation for Christmas. For the first time ever, I sent out cards before Christmas. I made gifts for my niece and nephew, as well as my husband. I had a big list of things I wanted to finish before I left for Virginia. I accomplished almost all of them.

What I realized, however, was that even with the Babesia, and, actually the Lyme, infections both becoming asymptomatic, Bartonella was still giving me problems. I coiled for Bartonella a few times in December before I left on my trip. I herxed a little with each coiling session, with the usual symptoms: hot night sweats, night heats, constipation, acne, tingling in my extremities, and, worst of all, kidney pain. On the days I coiled, I also got tension headaches that started in the back of my neck and grew in intensity until they reached the top of my head. Massaging the muscles in my neck and scalp helped relieve the pain part way.

The thing I was still worried about was the funny sensation in the left side of my neck and light heart palpitations. Between my heart and my kidneys, I had an idea about protecting my organs from further damage and healing whatever damage they may have suffered. I let it percolate.

There was something else that I learned which sent me into a tail spin. A friend from my Lyme support group mentioned that she had been “floxed” by Levaquin. She explained it to me four or five times between September and December. She talked about the FDA warnings on Cipro, Avelox, and Levaquin, that include tendon rupture and sensory-motor neuropathy in the arms and legs. I finally decided to look it up. It’s right there on the FDA website and on the current Cipro package insert.

When I read the description, I was yanked back in time to April 2007, when I started having extreme sensitivity in my legs, followed by an inability to move my legs without external assistance (like using my arms to move my legs). I was having problems before the course of Cipro, but things got much worse afterwards.

I began to read more and more about flouroquinolone toxicity. It was even more depressing than when I began researching Lyme Disease years ago. The short answer is that there is no known way to reverse the symptoms, but a few people have recovered by doing many of the things that we do as complementary treatments for Lyme Disease. These included high protein diets, other dietary restrictions to foods that become symptom triggers, saunas, supplements, etc. I realized I had done all these things.

And yet I’ve had a nagging feeling throughout 2014, that there was something left that I hadn’t resolved, something beyond the three tick-borne infections I’m aware I have. I thought it might be another infection. Now I’m wondering if it is flouroquinolone toxicity from the Cipro and later courses of Levaquin. I won’t be taking either one of those again. But how do I get well, assuming that these are the cause?

As I kept myself up at night pondering this new-to-me information, I realized that I didn’t know for sure what happened in 2007. I do know that a lot of my neurological symptoms didn’t respond to the Lyme-appropriate antibiotics I took for three years starting in 2008. I also remembered that the only thing that made a difference the first year, before I knew about the tick-borne infections, was Chinese herbs. I hated taking them. I didn’t know what a herx was, but I had a big one with the herbs. I felt like I was being poisoned. I guess I was, only not by the herbs but by the dying bacteria.

The Chinese herbs I use, and would recommend to a friend, are offered by practitioners of Traditional Chinese Medicine and are targeted to the the person. I don’t recommend Lyme formulas of Chinese herbs. I respect that the herbs are used in a way that is independent of the Western diagnosis and more targeted to the patterns of dysfunction in the person’s body. I learned that many different herbs have overlapping functions. There is more than one herb or one formula of herbs that can address tick-borne infections and help rebuild a sick body.

But this is a blog about coiling. So I’ll get back to that. I decided to do a course of Chinese herbs, for somewhere between a week and a month, to try to give a boost to my liver, kidneys, bladder, intestines and heart, all of which are strained by the years of illness, and all of which are going to be further taxed as I once again coil aggressively for Bartonella.

I went to Virginia on December 16. I had a fabulous time. I caught a terrible cold, from which I am not quite recovered. Even with no coiling and a bad cold, I had a more than reasonable amount of energy (until I had two nights when I didn’t sleep because I was coughing every 20 minutes). I had some neuropathy, especially in my left foot. I was more okay than I’ve been in years.

The herbs arrived by mail on December 22. I took them for 4 days, until I reached my practitioner, who said to wait until the cold was gone, since I would need a modified formula. I restarted them on January 5, since I’m just dealing with the remnants of the cold.

Here’s the deal with the herbs: they make me herx for Bartonella.

I have such mixed feelings. I don’t want to do anything that is going to generate more dormant Bartonella microbes that I will have to trigger later in order to kill them with the coil machine. At the same time, I feel like my body is telling me that I need to do something to strengthen my insides to prepare for the big Bartonella herxes I expect to experience once I start coiling again. It isn’t very scientific, but the Chinese herbs feel like the right thing to do at this moment.

I’ll start coiling again before I finish the herbs. However, I’m only taking the herbs right now so that I can understand what they are doing (which turns out to be the same kind of Bartonella herx I experienced from coiling at the beginning of December, only worse), and not confuse it with what the coiling does.

All that being said, the days seem so long. When I’m not coiling three hours a day, I feel like the days are more than three hours longer! It’s amazing how much a person can do with three more hours in a day.

2014: Triggers, Tribulations and Triumphs

Last year was supposed to be the year that I overcame Bartonella. I made progress. I coiled for Bartonella pretty aggressively for the first half of the year. The biggest difference I felt after that was fewer tension headaches (and fewer headaches generally) less tingling and static in my limbs and nervous system. Neither is completely gone, but both are less frequent, less intense, and shorter duration than they were in January 2014. I expect them to come back with the Bartonella herxes, but hopefully, they’ll still be smaller than before.

Things got side-tracked, however, by some competing goals. In autumn 2013, I was asymptomatic for Lyme and Babesia, so I began reducing my supplement program down to the bare minimum. I was on several different antioxidants and lots of vitamins. As I stopped each supplement (in a process that took more than two months), I had a short flare of symptoms. By coiling aggressively for Lyme and Bartonella, the flares ended and I could try stopping the next supplement. At the end of the process, I was no more symptomatic than when I was on all the supplements. I wasn’t asymptomatic, but I wasn’t any worse. Plus, I think the process allowed some amount of Lyme cysts to wake up, allowing me to kill them off and reduce the dormant load in my body.

Later that autumn, I began a program of reintroducing foods to which I had developed sensitivities back in 2007 and 2008. It was a useful series of actions. Each new food triggered symptom flares, mostly Lyme and some Bartonella. As long as I kept coiling aggressively for both infections, I made progress. I still know that the Lyme infection is active when I get pain in my ribs from eating wheat. However, even that has gone away since November. Now, most of the time I can eat any food I choose. The exception is still eggs.

In January and February 2014, I tried tiny amounts of baked eggs in cookies. I ate the cookies no more often than every 1-2 weeks. I triggered flares of Lyme, Bartonella, and though I didn’t initially recognize it, Babesia. I was okay, no auto-immune attack of my peripheral nervous system, as long as I was coiling for Bartonella and consuming boatloads of probiotic pills and foods (including unpasteurized milk which I consumed with each cookie). I stopped at some point, however, because I had other things to try and I didn’t want to push my luck.

At the end of February, I had my first of a series of vaccinations that I needed for a trip to Mongolia over the summer. The idea was to get the vaccines early enough that I could recover (using the coil machine) from whatever symptoms they caused by the time the trip came around. The vaccines triggered all three infections and caused some symptom flares. However, until I got a Tdap, the flares were minimal and easily treated by coiling for Lyme and Bartonella. The Tdap triggered the Babesia infection in a much bigger way. It took me a while to realize that Babesia had also been triggered.

Once I identified the Babesia flare, I was resistant to doing a full Babesia protocol. It was time consuming and competed with my plan to eradicate Bartonella. Hmmm. Not the wisest choice. The result was that I prolonged my own agony. I lost 6 weeks in the spring, laid out in bed because the Babesia was so bad. I was so tired that I felt like I needed to lie down, even when I was already lying down. Even worse, the Babesia was still slightly active when I went on my big vacation. By the time I got back, I had another flare (which coincided with a respiratory infection), and lost another 5 weeks of my life.

Having learned from that mistake, I spent several months in autumn focused almost exclusively on Babesia, coiling two different frequencies, three times a day. The Bartonella infection had to go on the back burner and wait. Babesia is easily the biggest drain on my energy and increases my perception of the symptoms of the other infections.

I feel like I won against Babesia. I’m not sure it’s gone forever. But using two frequencies and changing the protocol somewhat, I had a different outcome when I stopped coiling. In the past, when I coiled for 3 weeks past the last symptom, I would have a week of sheet-drenching night sweats after I stopped coiling. Then the symptoms would be gone for 8-12 months. This time I didn’t have any night sweats after I stopped coiling. The first light night sweat started with the Chinese herbs, over a week after I stopped coiling for Babesia, and is likely from a Bartonella herx.

I’m not quite ready to announce that the Babesia is in remission. For now, I’d say that I’m asymptomatic. If it doesn’t come back for a few months, I’ll consider that remission.

I’m also asymptomatic for Lyme. This has often happened in the winter. I expect at least a minor flare (and hopefully not more than that) at the end of January.

2015: The Year of Bartonella

Unlike this time last year, I don’t want to trigger the dormant Lyme and Babesia. Instead, my goal is to get to the point that I become asymptomatic for Bartonella. The goal this year is to cease being disabled by these infections.

The plan, so far, is to take Chinese herbs for a few more weeks. Then I’ll coil for three hours a day on Bartonella for as long as I need to. I have the protocol I used last January, though I expect to make a few changes (like adding in my neglected right kidney). I’ll do it for as long as I can. I’ll do whatever I can to support my body’s detox process. And then we’ll see how long it takes.

In the process, I suspect I’ll have to do some Lyme coiling. The plan there is to take it down to zero symptoms as quickly as possible, once the symptoms start again, so that I can get back to my Bartonella focus. The same is true if the Babesia symptoms return.

If it makes sense given the state my body is in this year, I’d like to start an exercise program. Short of that, I’ll settle for daily walks and occasional yoga. When the Bartonella is gone, I may revisit Chinese medicine to see if there is anything I can do to rebuild or repair my organs after the stress that the Bartonella herxes will put them under.

I’m focused and ready. My 4th anniversary of coiling in on February 4th. When I started with the coil machine, someone told me that it is possible to completely cure oneself of tick-borne illnesses with 5 years of coiling. I intend to make this next year my last.

Disclaimer

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