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 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.
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.