Posts Tagged ‘babesia’

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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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In Praise of Thoroughness

Thursday, December 4, 2014

Kidneys

As I reported last time, it took four years of coiling to discover my right kidney. You may laugh. It was there all along. I never, ever thought about it as a place to coil. My kidneys are where the toxins go out. I tried to be nice to them, to drink lots of water, sometimes with fresh lemon juice, to take supplements that tonify them as well as detoxify them, to acknowledge their vital role in my healing.

I’ve spent lots of time thinking about my kidneys, especially after I learned that weak kidney energy is associated with hair that turns gray earlier than average for one’s family (like mine started doing in 2008). I thought about my kidneys when they hurt, which is every time I’ve made an effort to eradicate Bartonella (including the times that predated coiling, when I used antibiotics, one of which may have helped me generate a kidney stone). I’ve wondered about the health of my kidneys when I have urinary tract problems, also associated with Bartonella. But coiling them directly never occurred to me.

After my last post, when I decided to start coiling my right kidney for Babesia, I thought about my kidneys some more. I’ve been coiling my left kidney all along, given its proximity to my spleen, which I know needs to be coiled for every infection. Since then, I’ve coiled my right kidney for Lyme. I didn’t see much of a difference, same level of herx as the previous week, on my weekly Lyme coiling schedule. I’ve also coiled my right kidney for Bartonella, once, and that’s where things get muddy.

Abdomen

After more than three years of coiling my whole body, minus my abdomen, for Babesia, I started to wonder if I was missing something. This line of questioning came directly from pondering over the importance of my right kidney. Anyway, when I first started talking to people who coiled to ask them about what they did that worked, they mentioned “everywhere” for a minute, plus enough time on the liver and heart/lungs to irradiate the entire blood stream. The amount of time suggested varied between 5 and 10 minutes. I opted for 10 minutes on each location.

I tried to figure out what everywhere meant. I determined that since Babesia lives in blood cells and purportedly hides in red bone marrow, that everywhere referred to my skeleton. That gave me a way to figure out a decent protocol, which I used to great effect, but didn’t get me to the end. That’s when I discovered my spleen. Coiling my spleen for 10 minutes not only made me herx a lot, but it also made the infection go dormant. Wow. That was fabulous. After three weeks of no symptoms that were directly and obviously from Babesia, I stopped coiling. I felt like a new woman. This was in the bad old days, when walking around the block was enough to put me in bed for the rest of the day and maybe several subsequent days. As a new woman, I felt way better. I could walk further before I got tuckered out. I still had to nap after any exertion, but I wasn’t always destroyed for all activity for an extended recovery spell.

One thing bothered me: I knew it wasn’t gone for good. Sometime after I stopped coiling, I had crazy night sweats for about a week. Then they stopped. They would return intermittently for a night or two, then go away. I didn’t suffer from extreme fatigue or light sensitivity or migraines, at least most of the time. When I did, the problems would come all together but for a few days. I think I relapse before I recognized it, but until the full relapse, I was kind of okay.

I have since made it dormant twice using approximately the same protocol as the first time. The infection dies down quickly when I coil a lot. The same problem with the ending repeats, I get intense night sweats for a few days, then I’m okay for months at a time.

This time, however, I want to be finished. I added in a second frequency 753 Hz, which made me herx after I was asymptomatic using 570 Hz on my old protocol. The herx took a few days to come and was short-lived and mild, only a few days of night sweats and a headache. I added in my right kidney, again I herxed after a few days, short and mild. Finally I tried my abdomen, just to be thorough. I wanted to leave no location where the protozoa can hide. After a few days, I herxed a little more than I did when I started coiling my right kidney: one day of horrible fatigue, one long headache, two nights of sweats, and on the last morning, a visual aura. Then the herx seemed to be gone.

Except, I’m having trouble with my heart. This is where it gets muddy.

But first, the three lessons I’ve learned this autumn:

  1. Coil Everywhere means coil everywhere. For systemic infections, especially these chronic infections that haven’t been adequately studied and are poorly understood, we don’t know where they hide, except for the general location in the host body. Furthermore, the abdomen has lots of places for microbes to hide and must be coiled for every infection.
  2. It can take a few days of coiling to herx, especially after the body’s detoxification routes are functioning again and the infection load is not overwhelming.
  3. Babesia kept relapsing because I gave it places to hide.

Heart

This is where we get to the muddy part. For some period of time, I’m not sure when exactly it started, but sometime after I started coiling my right kidney for Babesia, I’ve had a mild sensation on the left side of my lower throat. It’s there all the time. It isn’t exactly a swelling, but the sensation feels a bit like my neck or throat might be swollen. It isn’t painful. In fact it was unremarkable enough for me to notice and dismiss it.

About a week ago, I saw a stethoscope lying around and listened to my heart to see if the prolapse in my tricuspid was acting up. (That was a strange way to say it, but bear with me.) I have gone for long periods of time when my heartbeat was normal: lub-dub, lub-dub. At those points, I don’t seem to have a tricuspid prolapse. When my blood pressure is low, or I gave shortness of breath, or I have pain or fluttering in my chest, I can invariably hear the change in heartbeat that accompanies a tricuspid prolapse: lub-a-dub, lub-a-dub. Well, when I listened to my heartbeat a week or so ago, I heard: lub-a-dub, lub-a-dub. I went back over my records and did a new search for “tricuspid valve prolapse vagus nerve” because I knew that the Bartonella infection was acting up. I learned two things: first, one experimental treatment for tricuspid valve prolapse is vagus nerve stimulation. This is interesting, and makes me wonder if it is possible to get my heart working right without completely killing off the Bartonella infection. Second, one of the symptoms of a tricuspid valve prolapse is a funny sensation in the left side of the neck or throat. I realized I knew that at some point in the past, but had forgotten.

I’m not totally sure how to interpret the heart problem, which means I don’t know what to do about it. Is it because I’m coiling my right kidney and abdomen for Babesia, and this is the low-level herx that keeps going and going, and will continue until I’ve eradicated the infection? Or is this evidence that I’m back-sliding on Bartonella and need to focus on it big-time in order to get my heart working again?

The good news is that all the cardiologists I’ve seen never seemed too worried about the tricuspid valve prolapse. They let me know it might be symptomatic sometimes, and that I should be careful not to overdo exercise, instead building up slowly to whatever program I want to do. The only treatment they talked about was a pacemaker, which seemed and still seems way too extreme for the level at which this particular irregularity impacts my life. The other good news is that the heart problem tends to get less symptomatic when I take co-enzyme Q-10, which I will start doing when I stop coiling and visit my family for Christmas.

The potentially bad news is that I’ll have to keep coiling for Babesia when I return. The problem with that is the time I spend each day on that infection while the other infections don’t get treated sufficiently. Furthermore, for the past two nights, I’ve had night sweats again. What the heck? The previous night sweat was two weeks ago. Somethings going on. Again, I’m not sure if it’s some deeper layer of Babesia that I’m finally getting at, or just possibly, that since I’ve started intermittently coiling for Bartonella, I’m herxing from it.

Nerves

When I started this intensive Babesia protocol, I expected it to be about a month long. I had been coiling one frequency to the point where the symptoms were starting to go away. I figured I would add in the second frequency, herx a little, then coil for three more weeks. Instead, I made all these discoveries of what I was missing in my coiling protocol. Now it is looking like I’ll be coiling intensively for Babesia for two months to get to the end of my original plan. Then I won’t be coiling for a little more than 2 weeks while I’m away.

As a result, the other infections have had a pass. I’m doing an all-day coil-a-thon on Mondays, when I do the entire Lyme protocol and the entire Babesia protocol. At first, the Lyme infection would get active on Sundays before I coiled again. Then it calmed down. The herx is pretty minimal, with a lot of sleepiness and the need for long nights of sleep (10-11 hours). The Lyme is somewhat symptomatic with the recent rain storms. I feel it in my spine and in my knees. I feel better after I coil. It has also been more active over Thanksgiving week, when I indulged in sugars and wheat and other grains. I have more aches and pains, but it isn’t at a disabling level, for which I am grateful. I got one ugly Lyme headache in the back of my head to coincide with the last Babesia headache. The good thing was that a little Advil got rid of the nuchal headache and I only had to deal with the Babesia pain.

Bartonella has been a bigger issue. For a few weeks I only coiled once per week, on my head, shoulders and spine. It was enough to have a small herx consisting of difficult bowel movements and butt acne. (Why does that have to be the marker of a Bartonella herx?) However, this amount of coiling wasn’t enough to stem the rising tide of Bartonella symptoms. At this point, the symptoms include:

  • lower abdominal pain,
  • bladder pain & frequent urination,
  • nerve pain and tingling in my hands and arms, especially at night and when I wake up in the morning,
  • a feeling of electrical static at my nerve endings,
  • pain and muscle tension in my neck, shoulders and upper back,
  • headaches on the top of my head,
  • sleep disturbances (waking multiple times during the night, often with my hands numb),
  • digestive tract issues: difficulty swallowing, burping and indigestion, slow digestion and difficult bowel movements,
  • brain fog and word recall difficulties, and
  • tiring easily.

Frankly, I think all of these problems stem from my vagus nerve. I wonder now if the problems with my heart are also from my vagus nerve. I don’t really know.

Here’s a piece of logic about attributing symptoms to Bartonella that I had wrong until a few weeks ago. I think I got infected with Bartonella when I was 2 1/2 years old, the time of my first known tick-bite. There were lots of crazy symptoms I had that were not normal for a child, or later, an adolescent. These symptoms definitely got worse at times then resolved on their own. I had a second tick bite when I was 26. That’s when I think I got infected with Lyme bacteria and Babesia.

For a long time, I attributed all symptoms that predate 2001 to Bartonella and all symptoms that began after to the other illnesses, notwithstanding a certain amount of overlap. This has mostly borne out through treatment (pharmaceutical or coiling), with the symptoms that flare and go away with treatment for each of the infections.

However, I didn’t account for two facts:

  1. Some Bartonella symptoms may have appeared for the first time in the presence of the other two infections because my immune system was suppressed or preoccupied and Bartonella bacteria could infiltrate other body systems that were previously protected against invasion. In other words, the Bartonella may have gotten worse because I was sicker overall.
  2. Since we never knew it was Bartonella causing all sorts of crazy problems, I had to deal with a lot of accusations of being a hypochondriac. Thus I didn’t visit doctors unless I thought they could do something about my complaints, or the symptoms severely restricted my activities (like when I couldn’t type from the swelling in my wrists and nerve pain in my arms and neck shortly after the second tick bite).

Thus, I didn’t get diagnosed with a tricuspid valve prolapse until I fainted in 2001. After I had been going to acupuncture for a year or so, my heart went back to normal. Well, I fainted in 1995, same deal, only I was in France (at Lourdes, no less), so I didn’t see a doctor right away, or in fact, for almost six months. Who knows if I had a tricuspid valve prolapse back then that righted itself? I sure don’t. It could be just another symptom of a Bartonella flare, not a symptom of Babesia, as I have been thinking.

Which brings me back to Bartonella treatment. I coiled several times last week for Bartonella, expanding the areas I coil to include my abdomen, chest, liver, spleen and both kidneys. I felt better. I no longer had the pervasive feeling of electrical static in my skin. The headaches calmed down. I could think better. I wasn’t quite so tired (until I coiled for Lyme again). I had a few uninterrupted nights of sleep. The digestive issues are still there, well actually all the other symptoms are still there. I didn’t coil enough to really make a dent.

I’m not sure what to do from here. I haven’t felt like coiling for Bartonella this week because now I herx without getting real relief. Why bother? But it’s been a long time. I’ll stop coiling on December 15, the day before I go visit my sister’s family. I’m trying to decide the best course of action between now and then.

Intestines

My final thought for this post is about the end…the end of the digestive process that is. We recently installed toilets that have a lower water use in response to the drought in California. They are about 1 1/4″ higher than the previous toilets. For some reason, this small difference makes puts me in a position that makes it harder to defecate.

I investigated the availability and price of foot stools designed for the toilet. I had seen these long ago at a colonics salon. I discovered they came in multiple heights. So I decided to test out the foot stool we already have, which is 9 1/4″ high, about the height of the taller stool they sell at Bed, Bath & Beyond. I thought it would be way too high.

No way. It is perfect. Now, not only am I saving $25, but I find it so much easier to evacuate. I still have trouble, but less cramping and less time mentally communicating with my colon asking it to do its job.

I dedicate this final section to all who suffer from constipation and are looking for simple relief.

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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.

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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.

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