Posts Tagged ‘babesia’

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The Missing Piece

Friday, November 14, 2014

It’s been a few weeks since my last update, and I’ve been trying to concentrate enough to write for over 10 days. My herxes have changed a little because of how often I’m coiling and for which infections. I have more brain fog than I’ve had in a while, and a different kind of tiredness. I can go out and do things, but my mind feels unfocused. I don’t need to lie down as often, but my battery runs out at around 7pm at the latest. This all sounds more like Lyme and Bartonella. I think I’ve made huge progress on Babesia and I’m nearing the end of this cycle of coiling for Babesia.

The Kidney Connection

Over the past few weeks, starting on October 13, I have been coiling 3 times a day for Babesia using two different frequencies: 570Hz and 753Hz. I was using the protocol from my previous post. I herxed for almost 2 weeks after I added in 753Hz, mostly headaches with eye pain and/or light sensitivity, and occasional night sweats. I was hoping that as soon as they stopped, I could begin my 3 week countdown to finishing this Babesia coiling cycle.

No such luck. For scheduling reasons, I had to skip or reduce my coiling sessions on October 29 and 30. The herx that showed up after I’d been coiling again for a few days, November 2, was more intense than it had been in weeks: a big night sweat. It was followed by another one on November 3 and a lighter one on November 4. November 5 was my new day to begin the countdown. I was happy that my coiling program would stop just before Thanksgiving, which is what I’d mentally prepared myself for.

The thing is, I didn’t understand why I got such a big reaction after only missing part of my coiling time for 1.5 days. I still coiled my blood stream at the appropriate times. So I started to wonder if I was missing something.

On November 9, I figured out the missing piece. I remembered that at a Lyme Support Group meeting, someone mentioned that Babesia cells sequester themselves in the kidneys. When I heard it, I went home and looked it up. I couldn’t find any reference to it online. I saw that in immunocompromised patients, they had complications including liver failure, kidney failure and heart failure. But somehow, I saw these as systemic responses to big perturbations in the function of red blood cells. The evidence didn’t seem like enough for me to act on it.

However, once I remembered the person’s comments last Sunday, I decided I could test them without any risk to myself. So I changed the protocol to the one below. I had already been coiling my left kidney simultaneously with my spleen, so I only had to add time to the right kidney.

Two days later, I had an ugly headache with eye pain. The following night, I had a night sweat. The day after that I was tired all day. The following night, I woke up just barely damp. It seems that coiling my right kidney is a necessary part of getting rid of this infection.

Today, as I write, I’m thinking I might switch up the protocol again, adding in my abdomen, just to see if it makes any difference. If I herx again, I’ll make the change permanent. Otherwise, the new countdown begins today.

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 – 10 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
  • right kidney – 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

Backburner

As I mentioned in my last post, I have been ignoring the other two tick-borne infections as much as possible. As a result, the initial euphoria of having energy has died down in tandem with my energy, and I don’t feel quite as well as I did when I started the Babesia protocol.

Once a week, on Mondays, I force myself to coil for 6 hours in the course of a single day. It sucks. I get nothing else done that day. I do the full Babesia protocol and the full Lyme protocol. The Lyme herxes are a little worse than usual because I’ve let the bacteria multiply for a week rather than for 3 days, which is my usual Lyme coiling periodicity. The herxes themselves seem to be the cause of the brain fog. Between the herxes and the infection, I feel like I need huge amounts of sleep (11 hours a night). But, most days, when I’m awake, I’m active, until I run out of energy (no later than 7pm) and have to rest until bedtime.

I think that ignoring Bartonella is adding to the fatigue. I’m not very symptomatic, with tingling in my arms less frequently than once daily. Instead, I feel a little short-tempered and mopey, not quite hopeless about things, but heading in that direction. I feel like my body is doing its best to keep the infection at bay. I’m actually looking forward to coiling for it again and going back to a plan to get rid of it.

Cure?

For a long time now, my ultimate goal is to cure myself of these infections. Really get rid of the microbes in all their active and dormant forms, to be free to cease worrying about the infections coming back or being passed on to a child or partner.

I’ve become less and less convinced that it’s possible. These days, even as I try to figure out every way to get rid of Babesia, I’d settle for a long-term remission. Five or ten years or longer without symptoms or active infection would be preferable.

The same goes for Lyme and Bartonella. I think I can get the Lyme knocked down to nothing, and as long as I avoid eggs (which cause an auto-immune response that wakes up all the infections), I won’t wake it back up. Bartonella is the last infection on the list. I’ve never gotten the bacterial load down to the point that I’m asymptomatic and not herxing when I coil. When I get there, I’ll celebrate.

Anyway, this change in focus to remission, or, as it’s called in the HIV world, a “functional cure,” sounds like a defeat in my ears. I do my best to instead imagine the good days I’ve had, the week in Mongolia when I was asymptomatic, or the first week of visiting my sister’s family, on several occasions, when being sick wasn’t always on the back of my mind.

It’s odd to think that feeling well for an extended period of time would somehow qualify as settling. But after all the time, suffering, and experimenting I’ve put in, I want to be cured for good at some point.

Bittersweet

Separate from all the emotions I’ve been dealing with, I’ve been drinking green semi-smoothies for breakfast. Semi-smoothies are blended only part of the way, so I have a little something to chew on and get the salivary glands working.

Some of the greens, like dill or parsley, are not bitter. Fruit is enough to sweeten them. But others, like chard or dandelion greens, are super bitter. I add a little stevia to the mix, along with fruit (and nuts and protein powder). One morning last week, I realized it was giving me a sort of warm, happy feeling that I associate with chocolate. I love chocolate, but I’m sensitive to both the sugar and the caffeine, so I don’t consume it regularly. Yet there I was, feeling the same goodness in a different way.

It’s funny how a bittersweet morning can make the sunshine seem a little brighter and warmer than usual.

Disclaimer

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After a Quiet Month

Wednesday, October 22, 2014
Baby Blanket

Baby Blanket: Crochet Therapy

I’ve spent a lot of the past five weeks in bed or, more precisely, lying down in various places around the house. I was too sick with bronchitis to coil for the tick-borne infections, which meant I had a lot more time on my hands then I’m used to. I did my best to entertain myself watching episodes of Star Trek: Deep Space Nine and reading Conn Iggulden’s Conqueror series about Genghis Khan and his descendants. When the cough was gone and I was weak from Babesia but no longer contagious, I moved on to crocheting a baby blanket for a friend’s infant. Yet I still had more than enough time on my hands to think and think and think.

I had dark thoughts about giving up and never getting better. I thought about the effects that the antibiotics had on my body, on the infection they were intended to fight, and on the chronic infections. I mulled over traditional Chinese medicine (TCM), both acupuncture, which I ended up getting, and herbs. I thought about what my life might be like if I decide to give up on having a child or what it might be like if I changed everything around to be able to produce one ASAP. I thought about why I coil, the mistakes I made this year, what I learned from them, and what I might have done differently. I thought about how I might coil in the year coming up and what it will take to get to a point where I don’t need to coil and the infections are all dormant or gone. I thought about how much my body has been through and what I need to do to finally be healthy and able to exercise and be active again.

Five weeks is a long time. I wasn’t coiling. I also wasn’t eating very much. As a result, I stopped taking DIM for several weeks. Between not coiling (and letting the infections proliferate unchecked) and not taking DIM, my menstrual cycle took 5 weeks to arrive, making it officially late. The last several days before it came were torture. I was tired in a different way. I had slight night sweats and insomnia. It was akin to a Bartonella flare (which it might have been).

Now I’m coiling again. I’ve got my protocols for the next few weeks. I’m on a mission to get the Babesia out of circulation, knowing that it doesn’t solve all my problems, but it does give me the energy to tackle the rest of them. I might even have some energy left over to do fun things.

Coiling Report

Starting on October 13, I’ve been coiling for Babesia using a new protocol. It followed a week of coiling using the protocol that has worked in the past to get the Babesia under control: 570Hz, 10 minutes on each of my liver, spleen and heart/chest, plus 1 minute on each part of my skeleton, over the course of three sessions in a day.

After reviewing my notes from conversations with other people who coil, I decided I needed to try something different. I’ve known about two other frequencies for Babesia: 753Hz and 1583Hz. In the past I tried 753Hz for a few minutes and nothing happened: no herx reaction, no improvement. I’ve never done anything with 1583Hz because when I learned of it, the person said it was for people who got nothing out of the other two frequencies, who might have a different species of Babesia. However, I’ve had two conversations over the past 4 years that made me decide to revisit 753Hz. One person said that they had essentially gotten rid of Babesia with 570Hz, but when it came back, they couldn’t get rid of it the second time. So they used 753Hz and had a much better response for that relapse and the subsequent relapse before it went away for long enough that they thought it was gone. Another person said that they always felt better with 570Hz, but that it took 753Hz to get them into remission allowing them to finally stop coiling without the symptoms coming back.

I’ve previously been able to get the Babesia into remission with 570Hz. However, this year I could never quite shake it. Partly I wasn’t doing the full protocol with the level of consistency I needed to. There is now an open question about whether 570Hz is enough.

As a result, I’m on a one month plan, to be extended to 3 weeks past the last Babesia symptom, of coiling for both 570Hz and 753Hz, three times daily. I’m now 10 days into the protocol. A lot has already changed. I was feeling much better on just 570Hz, and the night sweats were gone. I was still tired every day, but by the end of a week, I no longer needed to spend a good part of each day lying down. Two days after I added in 753Hz, I had a night sweat, enough to change my shirt, but not enough to feel like I was drowning in my sleep. I had night sweats that got progressively lighter over the next several days. On the fourth day after I started, I had a massive headache with light sensitivity that lasted about 8 hours (bad enough that I wore sunglasses in the house) and heart palpitations. Since then, things have been looking up. Each day I have a little more energy than the previous day. I get tired in the afternoon, but I rest for 30-60 minutes, rather than napping for 2-4 hours. I’m still having a slight sensation in my chest that goes up to the left side of my neck, but it is minor.

A wild, male house finch I saw on my walk yesterday.

A wild, male house finch I saw on my walk yesterday.

I interpreted the temporary increase in symptoms to an additional die-off from the second frequency. Beyond that, I’m hoping to be at the three-weeks past the last symptom by Thanksgiving. Having more energy has been fantastic. I’ve started to use it doing light housework, which I know I can stop doing anytime and rest as needed. I’ve also gone for walks outside. It’s nice to be able to go for a walk at all, and even better that I don’t have to lie down for hours when I return. I’ve been enjoying cooking and eating my own delicious, fresh food. I’ve finally gotten through the emails I’ve wanted to answer and I’m considering a new blog to post photos from my recent trip. My quality of life has improved tremendously. Babesia really is the key to getting my life back.

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 – 10 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 – 10 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

Backburner Infections

Unfortunately, the other two infections, Lyme and Bartonella, have not stayed quiet in the weeks after I took antibiotics for the respiratory infection. As I notice symptoms coming on, I have done some coiling for them.

For Lyme, the symptoms started with the sensation that an insect is crawling around a small area of my skin. The the area changes to a different part of my body, far from the previous sensation. The first night this happened, I had a fit. I was lying in bed, the sensations made me worry that the recent flea infestation was back and worse. But there was no way a flea could jump from my ankle to my shoulder in a split second while I was in bed under the covers. I kept checking my skin and the bed, but the only small things I could find were lint. I coiled my head, my chest and my spine the following day (and for the 3 subsequent days, until yesterday), at three minutes on each location. The tingling was gone by the morning after the first coil. I have had some other Lyme symptoms, including a headache in the back of my head, shoulder and neck pain, a dull ache on the right side of my body, sleeping 10+ hours a night and some chest aches. Mostly it seems neurological, and the chest ache could be from Babesia, but I’m hedging my bets a little. They are going away, a little more each day. After today, I’m hoping to take a few days off from Lyme and use the coiling time to get to Bartonella.

For Bartonella, the symptoms are also neurological but different. I get tingling in my arms from shoulder to fingers and nerve pain in my arms. My intestines are some days okay and some days irritated. I wake up at night, hot but not sweaty, with crazy dreams. I have intermittent ringing in my right ear. My kidneys hurt and I have mild pain in my lower abdomen. I had an ugly vagal response with my very late menstrual cycle (my vision whited out but I remained conscious, and I had sweats and chills and weakness for hours after a bowel movement). My response is to coil for Bartonella when I can, hopefully more often in the next few days. The protocol for now is 6 minutes on the back of my head, 4 minutes on my sacrum, and 2 minutes on each shoulder knob as well as on my upper and central spine.

Planning Ahead

I spent that month on the couch in despair. I thought through a lot of things while feeling hopeless. Rather than recount all the fine details of my distressed thinking, I’ll end with what I decided for the next phase of coiling.

Last year, when the Lyme symptoms went away, I did a bunch of things that triggered Lyme flares, including adding in new foods and reducing supplements. I’m now able to function as well as I did before I made the changes. I also triggered the Lyme (and made the other infections active/more active) when I took necessary vaccinations for my trip to Mongolia. It ended up making me more disabled for weeks and months at a time. Looking back, I think the first actions to increase my dietary variety and reduce my dependence on supplements to feel okay were a good idea. The rest was a learning experience.

What I’m hoping to do in the next several months is to first get the Babesia into remission (or gone would be even better). Then I’ll get the Lyme to the point of no symptoms again. Once those are done, I’ll take another crack at Bartonella and see if I can get myself to be symptom-free for an extended period of time, something I can’t remember experiencing. At that point, I’ll evaluate whether I have any other active infections to treat.

I would like to be not-disabled by these illnesses for a period of time before I consider trying to trigger them again (eggs anyone?). If I’m healthier when I start out, maybe it won’t be as bad. Alternatively, at that point, I may decide that I don’t want to go through all the disability and psychological torture again, and that I can live with the infections as long as they remain dormant. Only time (and success with the coil machine) will tell.

Disclaimer

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Clarity

Wednesday, October 15, 2014

It’s been a whole month since I’ve been at the computer and able to write. Sometimes I wonder how I blogged the first year that I was coiling. I was definitely as tired as I have been this month. I was certainly sicker. I was also alone way more of the time. My only responsibilities were to take care of my cats. Back then I ordered out food or my mother did the cooking and brought it over.

My life is way better now. I spend time with my husband, even when I feel my worst, and I have to travel up and down the stairs multiple times a day. When I was too sick to cook, my husband brought in food. But as soon as I felt well enough to stand for a while, I was cooking, which used up all my energy. So no blog, but a little bit of life.

That first year, my biggest success was tackling Babesia. The amazing thing was that I started to have days when I wasn’t dead-tired. They weren’t frequent at first.  I was still pretty tired most of the time. But I could peel myself off of a horizontal surface and do something.

Twice this year, I was back in the dead-tired zone. The first time was from the end of March through the beginning of June. Most of those days, I was dead tired. Occasionally, I had days when I could do something, but I paid a steep price each time. Active days were followed by at least a week of being too tired to move. I was sure that it was the vaccinations I took making all the infections come out full-blast. I certainly had a multitude of symptoms from all the infections I’m aware I have. However, the key infection that made a difference was Babesia. Once I started the full Babesia coiling protocol, I was significantly better in a week. One week. If circumstances had been different, I would have coiled the full Babesia protocol for 3 weeks past the last trace of symptoms, but I couldn’t. I had too many things going on all summer, each punctuated by heavy fatigue. I kept trying to convince myself the Babesia was dormant again, which led me to wonder whether there is an active 4th infection.

Bronchitis

Where I was when the cough started

Where I was when the cough started: Ongiin Khiid, Mongolia

The second time I became dead-tired was this past month. I came back from my trip to Mongolia with a cough. The cough came and went and I was sort of okay.

Then September 14, my cousins came to visit. I pushed too hard to do things with them and ended up with a fever. I wrote my last blog post with the last bit of my energy before I headed to bed for a few weeks.

The cough turned out to be a very bad case of bronchitis. I had fevers every morning and every night. I was achy all over. My neck muscles were strained. I had no appetite, and when I did eat, I would feel nauseated after a small portion. I ended up losing 14 pounds in three weeks. I was dead-tired all the time. I slept a large portion of the day. I was up at night coughing to the point of gagging. When I took Advil for the fevers, I would sweat for two hours, feeling hot and cold until the fever broke. Then twelve hours later, I’d have a raging fever again (usually around 101.4 degrees F), and start the process over. When I took Advil at night, I couldn’t sleep because I was so uncomfortable, sweating and freezing and hot, repeat.

I tried coiling a few frequencies that I’ve heard might help. They did nothing. I ended up taking two courses of antibiotics in the fear that this infection might turn into pneumonia. The fear was in part because I was having night sweats every night, even before I started Advil.

The first antibiotic was azithromycin (Z-pack) for 5 days. I’ve taken it for Lyme before. I’ve also taken it as part of a combination to treat Babesia. It didn’t help much with the bronchitis, though I stopped having night sweats, except when I took Advil. The second antibiotic was levofloxacin (Levaquin) 500mg for 10 days. With the first dose, the coughing got much worse. I thought, just maybe, this might be finally expelling the infection. But it didn’t. I still had the cough and all the other attendant problems of this infection.

One night, I decided it was time to stop taking Advil. Whatever my body was trying to do with the fever, I needed to let it do. Nothing else was working. That night, I went to bed with a fever and coughed for a half hour. I felt like I was freezing. But when I slept, it was a sound sleep, rather than staying awake through hot and cold the way I did with Advil. I woke up once, drenched in sweat, but a comfortable temperature. A good night’s sleep gave me some clarity. A side benefit was no fever in the morning (even though it returned at night).

Acupuncture

The first clear thought I had was to find an acupuncturist. As I’ve written about in the past, acupuncture has played a key role in my health. When I first had the tick-bite (that I didn’t recognize as such), an acupuncturist reversed the worst of the joint problems and kept me healthy enough to work. When I became disabled by the tick-borne infection trio (Lyme, Babesia & Bartonella), but didn’t know what was wrong, an acupuncturist treated me for the immense pain, and got me well enough to look for other doctors who might know what was wrong.

I stopped using acupuncture after I’d been coiling for a while because acupuncture stimulates the immune system, especially if the imbalance I have is a depleted immune system. I wanted to let the infections stay active and kill them, so no more acupuncture. Then I moved to California and didn’t know any acupuncturists.

Somewhere in my recent fever-ridden haze, I realized that an acupuncturist might help me get rid of the bronchitis. I went to a clinic in town, Watsonville Community Acupuncture. The women who work there are competent and gentle. The place is rather inexpensive, and the treatments are in a room with other patients, all of us in recliner chairs. They suggested I come several days in a row.

After the first treatment, my nightly fever was only 99.5 degrees F. After the second treatment, which was the next day, my fever was gone for good. After the third treatment, one more day later, my cough was only in the morning when I got up and at night near bedtime. My appetite started to increase. I was starting to get my strength back, enough to do a little something. But I had no stamina. After 15 minutes of sitting, standing or walking, I was done for several hours, ready to lie down again.

I got two more treatments the following week. I was feeling different. The cough isn’t totally gone. It almost was, until I aspirated a tiny morsel of food last night. Now I’m all full of phlegm again. But I don’t feel sick the way I did.

Back on track

After the first three acupuncture treatments, I went back to coiling. I did full protocols for Lyme and Bartonella. I didn’t notice any kind of herx for Bartonella. The only symptom from the Lyme herx was moderately smelly urine about 48 hours later (which happened a second time when I coiled for Lyme again several days later). In any case, it’s no surprise that the two bacterial infections are mostly dormant after all the antibiotics.

I ended up with one other strange problem. The front of my right leg went into a painful spasm making it very difficult to walk. My gut told me to try coiling at 690 Hz for Mycoplasma fermentans (also an alternate frequency for Lyme). I did it three times in one day on my sacrum, 5 minutes each time. The next morning, I woke up feeling better, until I went down the stairs for breakfast. The stairs did me in. Not only did the front of one leg hurt, but my hips, on both sides, were stiff, tense and painful. It was bad enough that I wanted to shout, so I did. Then I tried yoga. I know enough poses to get myself loose. Forty minutes of yoga essentially fixed the problems.

Babesia Revisited

As things started to look up, I had a huge night sweat. No fever. Just a classic Babesia sweat. The next day I felt dead-tired. Again.

That’s when it hit me. I finally had some clarity about how difficult things have been since January. In January, I tried something with eggs in it. My intestines were in better shape than they’ve been in in years. Partly I wanted to see if I still had the neurological reaction to eggs. Partly I was seeing if I could trigger the Lyme to become active because I no longer had symptoms or herxes. I successfully triggered the Lyme, made the Bartonella worse and wrote all about it. What I didn’t realize is that I also triggered the Babesia and that it has been at least somewhat active all year. I was not so sure it was active because I didn’t get migraines or light-induced headaches. I never got the Babesia infection under control again, even after I realized it was active. I kept wanting to cheat, coiling less than I need to to beat it back.

This time, I’m not playing games. I’m doing the full Babesia coiling protocol, three sessions a day, at 570 Hz. I coiled for a week and I was much improved. The night sweats stopped. I’m not dead-tired. For good measure, based on a piece of advice someone gave me 3 years ago, I’m also doing the same protocol at 753 Hz. It is another Babesia frequency for when 570Hz doesn’t work. I had a night sweat the first night I coiled at 753Hz. So I assume it’s doing something.

The plan is to knock Babesia back to dormant or gone. Either would be fine, although gone would be preferable. For the next month, I’ll be doing the full protocol for each frequency every day. Or for at least 3 weeks past the last symptom. To accomplish this, I’m doing the bare minimum on Bartonella and Lyme, for both I’m only coiling my central nervous system. The goal isn’t try to vanquish all three infections at once, but to get rid of one, and prevent the others from getting too active. I wasn’t going to coil for them at all, but I can feel a few symptoms of each (tiredness in late afternoon–Lyme, tingling in arms-Bartonella).

Here’s hoping the next month takes me back to feeling normal, or at least as well as I did last autumn.

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Cycles and Progress

Saturday, July 19, 2014

I spent two weeks in Jackson Heights, NY, where I grew up and where I lived for the first five years after Lyme Disease caused me to become disabled. It was great to see my parents and friends. I only saw my mother for a short while. I was staying with my father while she traveled with my sister. Being back in NYC reminded me of what it was like when I lived there and allowed me to see how much progress I’ve made, even in the aftermath of the vaccines.

I returned to Watsonville with a friend from NYC. We hung out for a few days (not enough time to recover from the trip to the East Coast) before heading to Yosemite. This trip to Yosemite is the third early summer trip in three years to the same place. Like many other periodic activities, it gives me an opportunity to observe my long-term progress against the tick-borne infections.

Jackson Heights

Right before I left for Jackson Heights, I made a Babesia breakthrough. Once again I “discovered” that I need to coil my whole body for one minute, plus ten minutes on each of my spleen, liver and chest, at three different times of the day, every day, to overcome the active infection. I keep thinking that there is a lower load of infection with each relapse and that I can get away with coiling less. But that never works. When the load is low, the protozoa reproduce rapidly, thus frequent (three times a day) treatment is needed to stay ahead of their reproductive activities. I hope I’ve made a permanent impression in my memory and I don’t prolong the torture of Babesia when it flares again.

In any case, I was feeling a lot better a few days before my trip. I wasn’t exactly through with the active Babesia infection, but I’d made a lot of headway. Despite the progress, I suffered from a severe migraine on the plane and as we landed. It was so bad that I could barely stand up and walk in the airport. I tried to cut the headache short with a caffeine infusion (a cup of cola) which made it bearable enough to take a taxi home. My husband gave me an intensely painful head massage that night, which broke the migraine. I was fine for several days after that.

Beyond the headache, at the beginning of the trip, most of my symptoms were peripheral, which I read to mean that I had significantly beaten back the Lyme and Bartonella relapses by coiling. I had joint pain in my hands, knees and ribs; my limbs were tired and achy; I had minor digestive upset. As the trip stretched into the second week, I got more tired and irritable. I felt the headaches coming back, and I used caffeine intermittently to cut them short. My bowels started going haywire. One morning, I couldn’t move my arms for several minutes. The following morning, and the rest of the mornings until I got back to Watsonville, my body felt like there was electric static pulsing through it. I knew I needed to go back to coiling, but that had to wait until my return.

On the good side, NY had the kind of weather that previously triggered an attack of tinea versicolor. This was the first time I was in that kind of weather since last August, when I tried using a probiotic approach to getting rid of it. All the other ways I’d tried (from using Selson blue to smothering the area with lavender oil) had been temporary fixes, so that the next time I was in hot weather, the rash came back. Not this time. I was in hot, humid, muggy, soupy weather in New York. No rash. Nothing. Like I’d never had tinea versicolor ever before.

Meanwhile, I had a great time with my dad. The first week, my husband and I took him on several excursions: a baseball game, a Broadway play, a trip to a beach and boardwalk. After my husband left, I took Dad to visit friends and relatives, with the help of his aide, and invited other friends and relatives to visit us. We both got pretty worn out by all the activity. By 7 each night, I was done. I sat with my legs up and crocheted in front of the tv. We watched Murdoch Mysteries until it was time for bed.

This trip was a reversal for me. I was the one who could walk, cook, drive the car, go to the store and all that. It was different. Before I moved, I could barely walk to my parents’ apartment, two blocks away from mine. My mother would get the car and bring it in front of my apartment when we went anywhere. She had primary responsibility for my grocery and cooking needs. Now, not only was I taking care of myself, but I was taking care of my father, who has mobility disabilities–similar to the ones I had. There were funny moments when my body and verbal language was a carbon copy of what my mother says and does. (That never happens when I’m in California!)

It felt freeing, like I’d grown up again, and like I’m past the worst part of these illnesses. Or like I’m on the other side of the big mountain I had to climb. I haven’t reached flat land again, but the air is denser and it’s easier to breathe.

Watsonville

When I returned to Watsonville, I intended to do 3 days of big coiling sessions. Bad idea. My first night home, I coiled Lyme for 14 minutes on my head and spine (7 locations) and Babesia for 10 minutes on my chest. I had a herx by the time I woke up the next morning: spine pain, fatigue, brain fog.

I switched gears, coiling one more time the next day: 21 minutes on Lyme (same locations), Babesia for 10 minutes on my liver, and Bartonella 8 minutes on the back of my head. I didn’t do full coils on my body as originally planned. My new goal was to coil enough to push back the symptoms that had cropped up, but not so much that I would get knocked out from herxing. I didn’t quite manage to achieve either goal, but I came close. The symptoms calmed down, as in no more electric feeling, and I herxed a bit. I needed to spend a day mostly resting after all that coiling. But I wasn’t knocked out. I was able to go on the camping trip.

Yosemite

The camping trip this year was similar in many ways to the previous two years. We stayed at the same car-camping site on Tioga Lake. We spent time walking around Tuolomne Meadow. And, as we did last year, we hiked around Lyell Canyon, and back-packed overnight at May Lake.

I was anticipating some trouble this year. When the trip started, I didn’t feel completely recovered from the vaccinations or from the trip to New York. In addition, I was expecting my period, but wasn’t sure what to expect. As a result of all the possible extra challenges floating around in my mind, I did a better job pacing myself. I cut short one of our walks. I skipped one of the hikes. When I didn’t participate in the activities, I rested. Rest was very helpful in keeping me going for all the days we were there.

Despite my negative anticipation, the trip was easier than in previous years. Last year, the trip was longer. I needed a full day between each day of activity before I could do anything else. This time, I was okay with resting in the evening, sleeping at night, and taking it easy in the morning, but having a full afternoon each day.

The most striking difference was the hike up to May Lake. Last year, the hike was interminable. I didn’t think I would make it to the top. This year, I was prepared for it to go on and on forever. It was a long mile to the lake, up hill the whole time. It was hard. But it wasn’t impossible. We reached the top before I expected. I was tired, but not ready to pass out.

Returning from May Lake, looking out over the valley

Returning from May Lake, looking out over the valley

Once we had unpacked our food into the bear boxes and set up the tents, I went into the lake with my husband. I hadn’t planned on getting in the water. My bathing suit and Tevas were in the car. I figured I’d join him at the water’s edge, only dipping my toes in the water.

The water looked so inviting. Once he was in, I couldn’t resist. I stripped to my underclothes and waded in up to my knees. The rocks were sharp and slippery, so I jumped forward into the freezing water. It was fabulously refreshing. The sun was shining. The nearest people were a distance away. The two of us splashed around a bit, until I got cold. I borrowed his sandals to get out of the water, then threw them back in so he could climb out when he was ready.

I stood in the sunshine. My whole body felt the warm pressure of the sun’s rays. I undressed and dried off. In that moment, I couldn’t help falling in love with my own body. The feelings that overcame me were such a sharp contrast to the years of anger when I couldn’t walk or that my body still runs out of energy before I get to do what I want for the day. It was a reversal from the very intentional body-positive messages I’ve been giving myself as my weight has climbed up and up over the past year. I was exulting in the wonderful feel of the outdoors, the secluded shoreline, the chill of the water and the heat of the sun covering my entire body, this body that carried me up part of a mountain to a beautiful lake and still had some oomph left to swim. Standing there naked, I basked in the reverie.

Then I heard a plop. Two men were fishing about 5 yards away. Oops.

The camping was wonderful. The whole trip was great. In the past two years, I was awed by the natural surroundings, the mountains, the forests, the lakes, the meadows, the streams. In their presence, I was able to transcend my physical struggles, to escape the pain and fatigue and limitations, to engulf myself in the natural wonders. This year, I was in awe of my physical abilities. The beauty that surrounded me was in focus in a different way, as though I no longer had to exempt my mind from my bodily presence to absorb the amazing world around me. I was part of it in a new way. I had to breathe deeply, move slowly, rest often. But even in these movements and rest stops, I was fully there, body and mind. I was no longer preoccupied with whether I could handle being there, and instead, I was actually there.

Sometimes I convince myself that the trips I take with my husband are a distraction from what I need to do to get better, to rebuild a work life, to get over Lyme Disease and the other chronic and tick-borne infections by coiling. But when I’m out there, I feel stronger, I have a clearer view of what I need to do to get to the end. I understand that even though the vaccinations knocked me out for a time, they were an important part of learning about what coiling can do against tick-borne infections. I am able to notice how much stronger I am, compared to how strong I usually feel. I get bolder ideas and come home recharged.

Watsonville

I’ve been back at home since Sunday. Tuesday I drove my friend to the San Francisco airport after we spent the afternoon at Fisherman’s Wharf. Wednesday, I started coiling again. I’m back to coiling for Babesia three times a day, then coiling a full scan of Lyme one day out of three and a full scan of Bartonella on each of the other two days.

Coiling takes a lot of time. My days seem shorter already. I’m back to having a million things I want to do in a day, and find myself accomplishing only a few. The herxes aren’t as bad as I expected, not even as bad as last week. My intestines are in knots. My heart is bothering me a little. I’m tired again. But I’m still up and moving all day.

I’m going for daily walks. I’m experimenting with the ideas of high-intensity interval training (HIIT), including a 30-second active and 30-second rest plan I did for the first time today. I’m less interested in limiting my diet again and more interested in getting my body moving.

Despite the difficulties of the past several months, I can see progress. I’m reaching past the previous progress I’ve made over past year, cutting out supplements, adding foods back to my diet, experimenting with triggering the infections using eggs (my remaining food trigger) and vaccinations. I feel stronger and healthier than in a long time. As I said at the beginning of the post, I’m not off the mountain that these infections represent, but I’m closer to the bottom and it’s gotten much easier to breathe.

Disclaimer

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A Month in my Head

Saturday, June 21, 2014

I’ve been talking to myself a lot the past month. It’s been a physically challenging, emotional roller coaster of a month. The vaccine I took at the end of March continued to wreak havoc on my immune system. The Lyme infection got more active. The Babesia infection got more active. The Bartonella infection got more active. And the unidentified other infection I suspect I have also seemed more active. Even as I reduced their loads by coiling, it felt like more dormant microbes kept waking up.

I couldn’t write. I barely used my computer. (And when I did, it was a very specific, time sensitive task or two.) I learned during this time in a new way how important it is to keep records of how I treat my tick-borne infections and what effects the treatments have. I made mistakes that I wouldn’t have if I had written down my plans. I suffered for longer than I needed to, especially with Babesia. I forgot what I do that makes treatment work well.

All month, I thought about what I should have been writing down. At one point, I started a blog post in a notebook because the computer wasn’t nearby when I was finally ready to write. It helped me figure out the first thing I was doing “wrong” (though there is no single “right” way, there are many ways to coil that are less effective than the best I’ve come up with).

Beyond the headaches and wrist pain and shoulder and knuckle arthritis, each of which stymied my attempts to write, I was pretty depressed much of the time. I didn’t want to talk. I didn’t want to write. The vaccine triggered a full-on relapse. I felt like I’d made a big mistake. I felt like I was starting all over again. I needed this vaccine (TdaP) to be able to travel this summer, and the intensity of the Lyme relapse made me question whether I could travel at all. My grand plan of taking this vaccine, then trying a flu vaccine in autumn, both of which were supposed to trigger the Lyme cysts into waking up and hopefully reducing the amount of dormant Lyme in my system, seemed like a foolish venture. I started to question my judgement, and frankly my goal to fully rid myself of the Lyme infection.

In the aftermath of these past few months, I’m reconsidering. I thought a sterilization cure was possible (completely eradicating every trace of all the tick-borne infections in my body). It might be. But if I have to go through being disabled again, I’m not sure it’s worth the trouble. I’m now looking at a functional cure. Stress my body in the ways that I’m likely to run into in the future and coil until I have no more symptoms (and a little past that), knowing that my immune system can keep in check whatever dormant bacteria are left in my body. I’ll do that knowing that if I have a major stressing event, I’ll need to go back to coiling.

All this has also made me reconsider what it might mean to get pregnant. When I thought it was possible to achieve a sterilization cure, I planned to reach it before considering having a child. Now I think it isn’t possible, at least on a time frame of my own fertility and on a treatment plan I’m willing to go through, so it would mean being on long term antibiotics again. All this has my head spinning. I have no decisions made, about pregnancy or anything else. But I am still clawing my way out of a pit I threw myself into, not realizing how deep it was or how slippery the walls would be.

Meanwhile, I’ve learned a lot and relearned a lot. I’ll get to that in more detail in the rest of this post. Mostly, I’ve tried my best to get well using only the coil machine and not adding back in the supplements or using dietary restrictions that I know will boost my immune system and reduce my inflammatory response. These things definitely would have made me feel better really quickly, but they would send the active Lyme bacteria right back into cyst form and leave me no better than if I hadn’t triggered the dormant infections at all.

A Month of Coiling

Since my last post, I’ve been dreaming of a coil machine equivalent that could irradiate my whole body at once. That would be incredible. Instead, I’ve been using two coils, trying to cover my whole body multiple times a day and juggling which infections to treat most. The thing that bothered me was that the symptoms were much worse than the herxes. I felt like I could coil more and get better faster on any one of the infections, but that all three were kicking my butt so I couldn’t really focus on just one. If I had the mystical full-body machine, I would have used it for 10 minutes every day on the Lyme setting, 10 minutes 3 times a day on the Babesia setting, and 10 minutes 3 times a day on the Bartonella setting. If I could have been doing that, I imagine life would have been more about the herxes and less about the overactive infections.

Instead, I was stuck with problems with my machine. The needle on the ammeter was wavering instead of moving smoothly when I turned on the machine and instead of staying at the designated position once I set it. It made me really nervous. I called someone who has more expertise in understanding how the machine works. He suggested that if the problem occurred with both coils, it was more likely the connector on the machine or some other central problem. I was a bit paralyzed in how to proceed to test it. So I retrieved the extra coil machine I lent a friend to play with and tried my old, trusty, first coil. Same problem. It definitely wasn’t from the coils. Then the problems escalated. The amplifier started acting up, turning itself off as though it had flipped a circuit breaker. I wanted to cry or scream or throw my hands up and start taking antibiotics again. (Overly dramatic, but I felt so bad, physically and emotionally, that I had no bandwidth for problems with the machine.) I called a friend who knows almost nothing about Lyme or coiling and asked him to let me think out loud, with all the huffing and frustration coming out at the same time. As soon as I hung up, I knew the first thing to try was changing the power strip I use to plug the machine into the wall. Problem solved. Halleluiah!

A Month of Lyme Coiling

I’ve been doing the same Lyme protocol all month. Every three days I do a full body scan. I’ve modified it since the trip to Mount Shasta because I realized that doing extra time on my central nervous system yields big results. (Reminder to anyone reading this, this is not the protocol to start with. It can cause a herx that could send a person to the hospital. After coiling for Lyme for 3 years I can handle this much coiling.)

Lyme Coiling Protocol

432 Hz

Repeat every third day

  • Head: each side, top, back – 5 minutes per
  • Spine: upper, middle, lower – 5 minutes per
  • Liver, spleen, abodmen – 5 minutes per
  • Each shoulder blade, chest, each side of ribcage – 3 minutes per
  • Between legs: thighs, knees, calves – 3 minutes per
  • Feet through coil – 3 minutes
  • Each ilium front, each ilium back, each hip bursa,pubic bone, each upper butt cheek (to get iliac crest and femoral head), sitbones (bottom of butt) – 3 minutes per

The herxes have been present but not terrible: headaches, loose stools, extreme somnolence, long sleeps at night plus long naps, spine pain, cold hands and feet, and fatigue. These were less disabling than the Lyme symptoms themselves. I had joint pain, stiffness, cracking and reduced mobility in every joint. From my toes and knuckles to my knees, hips, shoulders and elbows, I was having a lot of problems. It hurt when I moved. It hurt when I stayed still. I couldn’t get restful. I couldn’t find relief. I tried some advil for my wrists, knees and neck when the pain got to the point when I couldn’t focus on anything else. I got mild relief, a slight reduction in pain, but it didn’t go away. In addition to the joint pain, I’ve had bone pain, especially in my ribs. In general, my pain level has been much higher. This contributed to a feeling that I’ve gone backwards and landed in a place I thought I’d never return to. The increased Lyme bacteria activity affected my moods, beyond what the pain caused. I was more depressed and defeatist than I’ve been in a long time. I couldn’t think straight, couldn’t concentrate on things I read or enjoy watching things on tv.

Slowly, coiling frequently, without all the usual detox activities, things lightened up. At this point, I have some shoulder and hand pain every day. I’m still pretty tired. But I can move around. I can knit again. I can type, at least today. However, I don’t feel like I’m through the woods yet. I get pain every afternoon in my ribcage. Before the vaccine, it only came when I ate wheat. Now it is every day. That pain signals to me that the Lyme continues to be active and I’m vulnerable to relapsing again.

A Month of Babesia Coiling

Since I’ve been coiling for all three infections, I’ve had to make do with coiling less than an optimal amount on each infection. I’ve been doing three coiling sessions each day, two coils available per session, split among three infections. At the beginning, I was coiling my whole body for Babesia, one minute on each location, 5 minutes each on my chest and liver, 10 minutes on my spleen.

About two weeks ago, I realized that coiling for Babesia twice a day, morning and evening worked better in the past to get rid of the active infection. At that point, I split up the coiling to use one coil on Babesia each morning and each night, doing the same protocol I’d been doing, only in two parts. It helped. I started to feel less tired. I had two days of crushing headaches (I wanted Athena to jump out of my skull already), then I felt like the Babesia symptoms were gone.

The symptoms at that point were fatigue and heart troubles (chest pain, extra click in my heart signaling that the tricuspid valve prolapse was triggered). The fatigue from Babesia coupled with what the Lyme and Bartonella kicked up made me want to spend a lot of time lying down. I couldn’t concentrate on anything, not even the radio. During this time, I went to do exercise a few times (stairs and walks at the beach) but that just knocked me out for three or four days afterwards. I felt pretty bad. But, once I changed the protocol to be split into two sessions per day, things started to get better.

I ended up having to skip a night of Babesia coiling. No problem, right? I thought I’d only need to coil for Babesia for three weeks after the symptoms were gone anyway. The next day I went back to my twice a day protocol. I had a big night sweat that night. What the heck? Why did it come back so fast? A few days later, I skipped again, and the following day after a regular Babesia coiling day, I had another big night sweat.

This is what I fear. Having to coil to keep the symptoms at bay but never getting rid of the infection. Then I remembered what I learned back in 2011. To get rid of the active Babesia, I have to coil my blood stream three times a day. It’s just a requirement. I relearned that twice before. Now on this 4th round of trying to get rid of an active Babesia infection, I forgot all over again.

I spent a morning trying to figure out what to cut out of Bartonella coiling to make room for the extra 10 minutes of Babesia coiling time I needed to do. I wished I had a third coil. Then it occurred to me that I have three coils at the moment. Bingo! Now I use the third coil in the middle of the day. I’m coiling at 570Hz, 1 minute on half my body (13 locations) in the morning plus 10 minutes on my spleen. In the afternoon I coil for 10 minutes on my chest. In the evening, I coil the other 13 locations on my body, 1 minute each, and 10 minutes on my liver.

Two days after I added in the 3rd coil, I got a migraine. These headaches are killer. Every day, I feel one coming on. Every day, I try to come up with a way to break it. Usually they start with light sensitivity (remember that? yet another gift of this relapse). Light gets it started and makes it worse. If it doesn’t start till late afternoon, I try to keep quiet and low light then sleep it off. If it starts earlier in the day, 8oz of cola do the trick. Since I have no other caffeine in my diet, taking caffeine at the beginning of a migraine cuts it short. I’ve done this twice, and not two days in a row. I’m afraid my magic bullet will lose its magic if I make it a regular habit. This post (which is becoming one of my longer ones) is fueled by a bottle of Coca-cola from Mexico. It goes down easier with sugar than with corn syrup.

With any luck, I’ll get through this in the next few days before I head to NYC for two weeks, followed by a camping trip when I get home. I didn’t plan for quite this big a relapse of so many infections when I decided on my summer schedule.

A Month of Bartonella Coiling

I’m always tempted to put Bartonella on the back burner, to do a minimum of coiling and deal with it later. But that doesn’t work this time. The days I spent in Mount Shasta let the Bartonella regrow and it was unpleasant when I got home. I had all sorts of trouble with my arms, poor coordination, tingling and numbness when I wake up from naps or in the morning. Tingling sometimes when I’m sitting still. Pain from my elbow to my fingertips, the entire part of my arm, not just the bones or muscles or joints. I’ve been tired a lot, though that’s from all three infections. I’ve had bowel problems and abdominal pain. My food sensitivities have all come back (though I’m not sure if they’re from Bartonella or Lyme or a combination of the two infections), leading to a swollen abdomen on many occasions, tooth pain, acne outbreaks and more bowel troubles. I’ve been terribly moody. It gets worse when I’m herxing, but I’ve been more than a little bit moody all the time. I’ve had brain fog to go with my short fuse and a series of crying sessions. It’s been bad.

I’ve been coiling for Bartonella two days out of three (the third being reserved for Lyme). Yet again, I feel like I’d have made more progress if I could coil daily with more coiling time each day the way I was before the Babesia woke up. I’ve changed my protocol to be 1 minute on each part of my body except for a few key areas that need extra treatment: back of head – 8 minutes, each shoulder knob – 5 minutes, upper and middle spine – 2 minutes each, sacrum – 4 minutes, liver, spleen, abdomen and chest – 5 minutes each. That’s all I can fit in a day, if I’m also coiling for Babesia.

At the beginning of the month that started May 25, I herxed a bit from coiling like this. There were tension headaches, kidney pain, and constipation, followed by hand and foot pain upon waking, urinary hesitation, and lower abdominal pain. The kidney pain and tension headaches are gone. I still have tension in my neck and shoulders, but they don’t seem to be triggering headaches. I still get a lot of lower abdominal pain and constipation. I’m also still having symptoms in my arms and hair-trigger emotional outbursts. Bartonella makes me feel crazy.

The Chocolate Experiment

When I last wrote, I was taking chocolate, 87% cacao, in the morning in an attempt to bolster my cortisol levels. I did this for a little more than 3 weeks. I didn’t notice any difference, except that it made it harder to nap. I think the caffeine overpowered any other benefits the chocolate might have offered. I didn’t really like the flavor unless I ate it with something sweet (like a dried mejool date). And I couldn’t tell that it was helping at all. So I stopped. Napping is easier but nothing else has changed.

I’m not sure what to do about my cortisol, if anything. I haven’t tested the levels in several years, but symptomatically, I seem to have a lot of traits associated with adrenal fatigue. I get tired late morning for awhile, then bounce back in the afternoon or evening, depending on if I get tired enough to nap. I’m losing more hair than I’d been doing before the relapse. I’ve started putting on pounds again, after stabilizing a few months ago. I haven’t been eating extra food, carbs or sweets. I just seem to put on weight by doing the same old thing. The only thing I think I can easily change in the near future is to begin exercising again as the fatigue has started to let up.

Meanwhile, my period was on time (28 days), with one day in bed, mostly sleeping, and cramps the next day that went away with one dose of advil. So something is still working right.

The sinus infection I caught in March is still dogging me. Only in the morning and before bed do I notice it, but it hasn’t cleared up.

I know that to deal with all of these random extra problems, I have to get the infections back under control. I suspect that I can do it with coiling alone, it just takes time.

Disclaimer

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Climbing out again

Thursday, May 22, 2014

Every now and then, I look at what I’m doing and I ask if I’m really getting better. This spring has been so hard that I often wonder if I’ve cursed myself by taking vaccines or even going at the Lyme infection by triggering it. I guess the only way to find out if the coil machine works is to keep using it and getting it right some of the time.

It’s been a hard two months since I got back from visiting my sister’s family. I was already sicker than I was at Christmas, the previous time I had taken a coiling break. January was sort of magical. After a little bit of coiling, I had no Lyme symptoms and no Babesia symptoms. Then I woke the beast. First I did it by eating eggs. I had small flares that went away within a few days of coiling. The visit to my sister was after the first round of vaccinations. It took longer for the changes in my immune system to trigger the three tick-borne infections I carry (Lyme, Bartonella and Babesia), but trigger it did. It also took longer for me to recognize the symptoms and treat them. I wasn’t back to my January freedom from pain and fatigue, when I took my coiling break.

At the end of March, I took the last of the vaccinations. I haven’t been well since then. I didn’t realize how much worse the vaccination could make me. I was so tired for so long. I had more Lyme symptoms, mostly neurological. The Babesia came back, mostly in the form of extreme fatigue. And the Bartonella got worse, despite increased coiling, after having been getting less and less severe.

Babesia

So, in my last post, I talked about containing the Babesia. I did alright. After a week of full-body coils, I was able to take off for a week. But it is starting to come back. I had energy on Monday, so I went to a yoga class. I’ve been tired all day again since then. Tired enough that I don’t want to do anything but sit on the couch and knit. I’m out of focus and utterly drained.

As of today I’m back on the full-body coiling for Babesia. I’m hoping that 3 weeks will be enough to get rid of the active infection.

Revisiting Lyme

Starting in September 2011, I’ve been using a Lyme coiling protocol of 3 minutes on each part of my body at 432Hz, with extra time on a few key locations (abdomen, liver, spleen, sacrum). At first I did it over the course of the week. Then over the course of two days, once per week. Then I started doing my whole body in a single day once a week. I only did this after the herxes became minimal, even without all the detoxing activities. Soon I found myself doing it every three days.

Based on personal observations, I strongly believe that the Lyme bacteria reproduce slowly in the human host, once they reach critical mass at which point the colony has the capacity to resist die-offs. At that level, the herxes are ugly and coiling only needs to happen once a week.

Once the bacterial load is smaller, I think it reproduces faster, which is why the symptoms flare up more often as I get better. Coiling more frequently makes sense. As long as I coil more often that the bacteria can replace themselves, I see improvement.

All of this doesn’t help with the dormant bacteria. I know there is a dormant load. I trigger it by accident sometimes (stress, a bad night’s sleep, etc.). I also triggered it on purpose, by cutting out my antioxidant supplements, by eating certain foods that give me a reaction, by taking vaccines. Then the dormant cyst form wakes up and attempts to recolonize my body with active Lyme.

Once again, as long as I coil more often and kill the bacteria faster than they can reproduce, I come out ahead.

I’ve been doing that with the three minutes every 3-4 days since I took the vaccine. But somehow, certain symptoms just wouldn’t go away. In particular, the ones generated by my central nervous system were making me crazy. Besides fatigue and the need to sleep 12+ hours a day, I had the sensation of insects crawling up and down my shins, and sometimes my arms, too. Then there is a dull ache, sometimes with tingling or other skin sensations on the entire right side of my body. Then there are the hot spots that appear on my palms and the soles of my feet…and the random, sharp, short-lived pains anywhere on my body, but especially my head. All CNS generated. So what am I doing about it?

Adding to the CNS symptoms, I had a semi-permanent pain in my ribcage on the right side. Enough to drive me to distraction.

My solution was to coil my head and spine (7 locations), my liver, abdomen, and spleen, for 5 minutes, and my heart for 3 minutes, every day for Lyme. I’m on day 5. Already the skin sensations are gone. I’m going to keep going, though, for at least ten days. Then after that, I may continue at 3 minutes on my head and spine, abdomen and heart, every day. (The only reason to decrease the time is so that I can get back to Bartonella.) I’ll continue coiling the rest of my body every 3-4 days.

I’d really like to get rid of the spine pain in the morning and the dull ache on the right side of my body. Both of those come with Lyme flares, but also with Lyme herxes. They are the only clues I have left that I’m herxing as a result of the CNS coiling program. I’ll keep going for as long as I can.

Bartonella on the Back Burner

All I was really hoping for this spring was to get to the end of the Bartonella infection. I was pretty aggressive with it for quite a while. Unfortunately, I can’t do all three infections at the level needed to make progress on all three. Since Bartonella has the most tolerable symptoms, it has to wait.

For now, I’m prioritizing Lyme and Babesia. I’m hoping that by the third week in June, when I take my next scheduled coiling break (to visit my parents in NYC), I’ll be done with the Lyme and Babesia symptoms. I’d like to go back to coiling for Bartonella most of the time and occasionally for Lyme, to keep the symptoms from coming back.

Shouldering the Infections

My shoulders are still a hot spot. I knew this before I went to a yoga class on Monday. Coiling my shoulder knobs has brought me the good kind of grief, the bigger herxes, the localized pain and stiffness, that the rest of my joints have already gone through and are on the other side of. I knew that there was still somewhere in my body where active Lyme and Bartonella were in reserve. I suspected it might be my central nervous system. Well, it is, but it turns out my shoulders still have an untapped reserve. I’m still paying attention, with the coil machine, to my shoulders, because they may be the key to finding an end to these illnesses.

After yoga, my shoulders were the only part of my body that had the out-of-control pain I used to get in all my joints after yoga classes. To my relief, my hips and sacrum weren’t on fire the next morning. They felt stretched but not irritated. Yippee!!! My shoulders, on the other hand, were aching and sore and stiff, and still are, today, Thursday! So I know there is more to go.

Menstrual Success

I’ve stayed on DIM for over 6 months now. After one late period, I’m back on track. I have only normal menstrual problems, cramps, mild headache, somnolence. Wow. What a difference. The most recent cycle was a reminder that even though I feel worse again, I haven’t completely screwed up by using big triggers against the Lyme infection. The Lyme hasn’t regained its hold of all my bodily systems. I feel bad, I’m in more pain and I’m more tired. But I haven’t lost control of my entire hormonal system, the way I had for so many years, even before I knew that my problems stemmed from Lyme.

Considering Cortisol

My weight, however, is starting to inch up again. I’m not sure how to respond, or if I can. I know I need more exercise. I’m doing better on eating a reasonable diet, not too carb soaked, low on sugar, usually enough protein. But my weight has me looking again at dysregulated cortisol.

I read more about cortisol recently and I’m wondering if the long term stress of fighting these chronic infections without antibiotics has put a strain on my adrenals.

Once I read enough to think the answer is yes, I started wondering if I should do anything about it or just let it go for now. I’m nervous about resetting my system too strongly and putting the Lyme back into cyst form. But I’m also worried about forcing my body to deal with damages from unresolved problems piling up as I do nothing.

For the short term, I’ve decided to do a little something, but not much: I’m eating small quantities of very dark chocolate (87% cacao) every morning. That is the mildest intervention I could find.

When I take my next coiling break, I’ll used either Siberian Ginseng or Licorice in the mornings to keep my cortisol up and give my adrenals a break. By then, hopefully, I’ll have routed the current crop of active Lyme using the coil machine, and I won’t be adding to the reservoir of cysts.

Disclaimer

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The Trouble with Triggers

Monday, March 10, 2014

These past few weeks, I’ve been feeling worse. For a while, I was confused. I thought things were getting better. I tried to trigger the Lyme infection using a series of vaccinations. Nothing happened at first. So I assumed that the vaccinations did not have a triggering effect and forgot about them.

About two and a half weeks after the first vaccination, I started having heart problems. It seemed random. Then last week, when I was at the Lyme Support Group, giving an update on my life and health, I mentioned that I’d had the vaccinations. Then I talked about my disappointment that they were ineffective. Later on I talked about how I was feeling worse. Somehow, saying it aloud made something click inside my head, not right away, but in the car on the way home. Over the weekend, I was talking to a friend who is an immunobiologist (not a medical doctor) and she mentioned that it would probably take about two weeks for the immune system to mount a systemic response to a dermal vaccine (which is what I got). The immediate, visible response on my skin didn’t confer systemic immunity, which took more time.

Now it all makes sense. I got the third and last dose on Thursday of the rabies vaccine. An immediate response appeared on my arm. Within a few hours, I felt more Lyme symptoms than in a while. It turned out to be an effective trigger. When I asked her about this, she suggested that the third injection was able to stimulate a fast systemic response because my body had already “learned” how to respond to the infective agent.

All this past week, I’ve been thinking about triggers, about my last musings about which infection(s) might be at the root of my heart problems, how I know when to stop coiling for an infection, and why it is so hard for me to consistently exercise (or do anything consistently besides using the coil machine).

The Trouble with Triggers

The problem with “curing” Lyme is that it is often a functional cure, more like putting it into remission than getting rid of the infection. In that way it is similar to many other illnesses, including, for example, the virus that causes chicken pox. For most people who are old enough not to have been vaccinated, once they are “over” the initial illness, they never experience the symptoms again. But for the unfortunate few, a bout of high physical or emotional stress can trigger shingles (or even worse, a second bout of chicken pox). The virus lives in the nervous tissue in a dormant form. It is rare under “normal” conditions that the virus reactivates.

It is less rare for a dormant Lyme infection to reactivate. Several people I’ve met have either ongoing symptoms, indicating continued infection, or have had full relapses, though not necessarily with identical symptoms to the first round of Lyme Disease, even if that first round was advanced, chronic Lyme Disease.

My way of trying to prevent a future outbreak of the Lyme infection once I get to the end of coiling is to try to trigger it over and over until there is little or no dormant bacteria left. I’ve been working on this for a while. The first new stress I generated was a reduction in nutritional and herbal supplements that made my immune system stronger than it is on its own. Then I added back in foods that trigger sensitivities. This is an ongoing stressor that I do periodically. As long as I keep coiling for and killing the Lyme infection, the sensitivities decrease. The last food sensitivity I still have to conquer is eggs.

Most recently, I’ve been trying a different trigger: vaccinations. I’m not getting gratuitous vaccinations, but ones appropriate to anticipated travel. These are succeeding in triggering the infection. I feel temporarily worse. In fact, I feel worse for longer than I did even on eggs.

The trouble with triggers is that it is difficult to control them. I don’t know in advance which infection will get triggered: Lyme? Bartonella? Babesia? some other infection I’m not yet coiling for? Eggs trigger all three known infections. The recent vaccinations seem to trigger Lyme mostly and possibly Bartonella. I’m not sure if my Bartonella symptoms are from not coiling my whole body while I coil for Babesia or if they indicate a vaccine initiated flare.

The next problem with triggers is that I don’t know how long the flare will last. For example, with the supplement cessation, the triggered symptoms lasted a few weeks, but diminished with each Lyme and Bartonella coiling session. With eggs, the Babesia infection woke up and hasn’t quite gone away yet, but the Lyme flare lasts only about 48 hours, assuming I coil within 24 hours of exposure. With the vaccinations, the triggered symptoms have been sustained over several weeks, diminishing after each Lyme coiling session, then coming back again within 24-48 hours. Not my favorite trigger, but possibly the most effective one.

Related to this problem is that I don’t know how long the trigger will take to generate a reaction. I know when I introduce it into my body, but I don’t know when the symptoms will start to appear. That’s why I got so confused about the symptoms triggered by the vaccinations. Unlike the symptoms triggered by eggs which appear about 1-2 hours after ingestion, or those triggered by wheat which appear in as little as 40 minutes or as long as several hours later, symptoms triggered by vaccinations, at least this time, initially took more than 2 weeks. After the third vaccination for the same disease, it took only a few hours. When I take my last vaccination for a different set of illnesses, I don’t know how long it will take for the symptoms to be triggered.

Another problem with triggers is that it is impossible to predict which symptoms will flare…and that I have to suffer through those symptoms! I didn’t know that the heart problems might be related to the vaccination. It seemed so mysterious and discouraging when they appeared. I was pretty upset by the random timing and the fact that cardiac symptoms are so debilitating. Unlike wheat symptoms, which primarily cause pain in my ribs and joints, cardiac symptoms prevent me from completing anything more than minimal daily functions. After most of the heart symptoms mostly resolved, I’ve been left with joint pain in my hands and spine and shoulders, as well as knee pain and fatigue as the primary Lyme symptoms. Other symptoms have included a return of floaters in my vision and some digestive distress. Of course, a few days after the last vaccination dose, I’m starting to have cardiac symptoms again.

The final and worst trouble with triggers is that they make me feel like I’m not getting better. I believe that I have gotten a lot better over the past three years, and even more drastically and obviously better since the summer. I’ve had whole weeks of being well and living my life the way I’d like it to be when I no longer need to coil (well except for three hours a day coiling during these good weeks!). When I trigger the Lyme and other infections, I feel worse. I feel like I haven’t made progress. I feel like this illness will never be over. However, thus far, except for the vaccinations, the triggers have had less and less of an effect as I use them and coil successively. The other exception is wheat. Wheat is my way of knowing how active the Lyme infection is. When it is active, I get rib pain within an hour. When it is mostly dormant, the rib pain might take several hours to appear or be very faint. So these triggers serve their purpose and seem to help me rout the infections, going a layer deeper each time I use a trigger.

There is one more idea I’ve been pondering. It seems that if all I wanted was to feel better, as in reduced symptoms, I could have had that this autumn. I could have stayed on all the supplements indefinitely, maintained all the food restrictions, avoid vaccines, be careful about not getting too stressed or eating food that might in any way be bacterially contaminated. It would have been a trade off, feel okay but have huge limits on my daily life. The philosophical conclusion I’ve come to is that in order to feel good sooner, I’d have to content myself with a permanent, mostly dormant, infection load, and I’d have to limit my life in ways that I find unacceptable. It is nearly impossible to avoid all triggers forever, so I’d keep the coil machine around for when I run into one unexpectedly. Instead, I’m choosing to tackle them head on and to reduce, hopefully eventually to eliminate, their power over me. In the end, I’ll be stronger and more fully able to live the life I want to lead.

Cardiomyopathy Revisited

In the last blog post, I talked myself into thinking that Bartonella is the root cause of my various cardiac symptoms, which include a tricuspid valve prolapse, chest pain, shortness of breath, fatigue and sometimes low blood pressure. In the interim, I’ve begun to think that that simplifies the picture too much.

I spend a lot of time trying to understand which infection causes which symptom. That makes it way easier to decide which infection to target at any given point in time. The reality is that the chronic tick-borne infections cause a variety of overlapping symptoms. Fatigue is a constant companion when I have a flare of any kind. Neuropathy in the form of pain, tingling and other strange sensations comes around with both Bartonella and Lyme flares. And that is just two of the examples, the list could be quite long.

Beyond the overlapping symptoms, there are the interacting problems. This is what I’ve been thinking about my heart. It is possible that the Bartonella infection contributes by messing with my vagus nerve and causing it to stimulate inappropriately, as it does with my intestines and less frequently these days, causing extreme hand pain. It is also possible that the reduction in blood pressure and other blood disturbances caused by Babesia exacerbate any minor cardiac symptoms that might have been less noticeable when my blood pressure was normal and able to transport and exchange oxygen, carbon dioxide and various dissolved substances in its normal way. That might explain why the cardiac symptoms diminish or even seem to temporarily vanish when the active Babesia infection is killed off. Finally, the Lyme infection may have tampered with the actual heart muscle in a way that I’ve heard about anecdotally from other patients, but is not as clearly causal as the well known AV heart block that appears in Lyme literature. Even when I am not experiencing air hunger or low blood pressure that I associate with Babesia, I feel heart pain and can hear the tricuspid valve prolapse with a stethoscope during Lyme flares.

Each contributes its component symptoms, but back when all three infections were raging, I was fully incapacitated with cardiac symptoms that seemed like a product (multiplication) of their parts, rather than the sum of their parts. These interactions might explain why when I fainted in 1995, when I didn’t have Lyme or Babesia, I recovered relatively quickly, but in 2001, when I had all three infections, I ended up discovering the tricuspid valve prolapse and have had ongoing problems since that time that coincided perfectly with other symptoms of the infections.

Endpoints

In the last post, I mentioned that I planned to do at least 14 full body coiling sessions on Babesia before I stopped. The symptoms have been mostly gone. The night sweats have gotten less frequent and sometimes don’t occur for a few nights. But I missed a few days, the night sweats came back, and now I’ve been coiling the full body Babesia protocol daily. I prefer to keep going until the last symptom has been gone for at least 2-3 weeks.

This time it is a little bit more complicated. I’m not totally sure that the night sweats are from Babesia. Certainly they are affected by whether or not I coil for Babesia, which could be that I haven’t reached an endpoint in terms of killing the active infection, or that as the Babesia die off, something else is presenting itself. The only way to know would be to go back to trying out multiple other frequencies until I find one that works, or to keep coiling away at Babesia until the night sweats disappear.

I won’t be implementing either plan in the short term. I’m taking a two week coiling break starting Thursday, when I go to visit my sister’s family. Then when I get back, I’ll figure out what I need to do for Babesia.

Looking back, however, I stopped coiling for Babesia prematurely in December 2012. The night sweats, which were my last Babesia symptom, got worse for a week, then they disappeared. I didn’t deal with Babesia symptoms again until this year. It is possible that my body could defeat Babesia while I’m taking my coiling break. Only time will tell.

New Habits

I am so excited when I feel well. I have a list of things I’d like to spend my time doing, including doing exercise on a daily basis (even if it is just walking around the neighborhood and occasionally doing something more rigorous), finishing my book about how to use the coil machine, cooking and baking foods I like, going outdoors to the local beach. Lots of things I’d like to do. I can manage to do them sometimes. But other than coiling, I’ve had difficulty developing new habits.

Sometimes I think this is a moral or psychological failure on my part. If I tried harder, prioritized better, or somehow changed the way I organize my time, I could be more active and do the things I enjoy doing. Today, though, as I was writing about triggers, I could recognize the ups and downs I’ve been experiencing. When I have no pain or fatigue for a day, I do a lot. It’s incredible. When I have pain, fatigue, cardiac symptoms, recurrent bowel problems (as in recurring all day long), I slow down. I can’t concentrate. I have a hard time moving around. I have a hard time motivating myself. When I do too much on a day like that, I find the next day to be totally wasted, with a strong need for rest.

Then there are the in-between days, when I’m mostly okay, and only somewhat distracted by the myriad of symptoms. I can do something, maybe two things, on a day like that. That’s when priorities become a big deal. Which is the one activity I’ll do today? If I have any energy or concentration left after that, what is the one other thing I should do? It’s rough. So on those days, I might have to go food shopping, and that’s just the way it is. Or I might decide to blog or clean up the kitchen. Or I might socialize with friends. I just can’t do all I want to when I’m having a hard time physically.

Thus I remain hopeful. As I have more good health days again, when the triggers lose their potency because more of the infection load has been eliminated, I can go back to developing the life habits that make every day a good day all around.

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