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Looking Forward and Backward

Tuesday, January 7, 2014

Last year was a huge year for me. It was my third year of coiling and I made so much progress. There is much to review and learn from. The biggest thing that happened was that I got bolder and bolder in the way I coil and in reducing the other supplements and food restrictions, working my way towards the life of a healthy person, rather than a chronically ill person.

I’m also thinking about the experiments I want to do this year, in the hopes that I can finally get all the Lyme out of my system, and (fingers-crossed) vanquish Bartonella as well. I may not be able to do all the trials I have in mind, but I’m certainly rearing to go.

But before we get to all that, I want to share a little of my vacation.

2013 Winter Holidays

In my last post, I was frustrated with the way things were going. I think I’m still susceptible to feeling overwhelmed by how long the Lyme Coiling journey is taking. Of course, it is much worse when my menstrual cycle is late getting started and my body feels awful.

The day after that post, my parents arrived (along with my period). It wasn’t so bad. I spent the morning half-resting and half-preparing to pick them up at the airport that evening. I had a great time, I was excited to see them and eagerly anticipated the arrival of my sister’s family as well. It was a wild emotional bounce after such a bad day.

Here I am with most of my family at the Aquarium. By magic, I carried my nephew for a long time!

Here I am with most of my family at the Monterey Bay Aquarium. By magic, I carried my nephew for a long time!

Then I had the honeymoon phase that consistently comes when I stop coiling for Bartonella. I was originally planning on coiling while people were here. But with a full house (8 people, 2 bedrooms) there wasn’t time or space to do it. And frankly I prioritized playing with my nephew and niece over displacing my parents from the bedroom to use the coil machine. That said, I had my honeymoon. Two days of the Bartonella herx dissipating. Then a week symptom free! I felt normal, even verging on energetic. It was fantastic. I didn’t need to nap or rest during the day. I was able to be involved in all the activities and have a little energy left over to knit before bedtime. I joined in all the family outings and activities. It was heaven.

Then a week after the good times started, I could feel the symptoms creeping back. First it was tingling in my arms in the morning. Then it was tingling in my arms or legs anytime I sat or lay still for an extended period of time. Then I started having night sweats and insomnia. Then I started needing naps to get through the days. (Fortunately the young people are young enough to need naps as well, so I slept in the room with them.) Then my digestive tract started acting up, mostly in my intestines. Then I started having a reaction to wheat again. The list went on and on, but the symptoms were pretty low-level and more annoying than incapacitating.

Some people take a break from their jobs when they take vacations. For me, a vacation is a break from the daily coiling sessions and writing about the coiling process. It is a welcome time to stop spending time focused on the ways my body doesn’t work right, just yet, and instead notice the beautiful place I live, the lovable people in my life, and realize how far I’ve come since the days when I couldn’t walk and was in constant pain.

I started coiling again on January 3, the day after everyone left. I could feel the herxes come on. Lyme mostly made me exceedingly tired and a little fuzzy headed for two days. Bartonella immediately generated constipation, abdominal pain, dental pain, nightmares, reflux, more tingling in my arms and legs, muscle cramps in my shoulders, and the ever present butt acne. What joy. (At least the night sweats are diminishing…)

Even with all the physical problems, I feel newly energized and ready to take them on. They are still, so far, more of an annoyance than a suite of incapacitating symptoms. I have enough good recent memories in my tank to take them in stride. But I think there is more at play. The herxes this time are not as bad as they were in the past. I didn’t get a monstrous headache. I don’t have light sensitivity. I’m not in immense pain at all. So I think I’m ready to move forward with my goals of getting rid of Bartonella and Lyme in the near term, even if it means the symptoms have to come back for a while…because I know it gets better again.

A Quick Note on Chocolate

I ate lots of the foods that are not normally on my list, and I struggled with a lack of appetite. I kept wheat in my diet. I ate more chocolate than I’ve eaten since 2005 (crazy!) even though that still meant no more than 2 servings a day. The chocolate is continuing to affect my skin (maybe because I had a few chips last night on ice cream), with a mild acne outbreak on my back and face. The ice cream, cake and chocolate also prevented my body from releasing the weight I’d put on with the progesterone booster (Vitex) which I stopped in early December. So I’m still hovering at 160lbs. I suspect that my weight will go down, back to its normal range, over the next six months, as I go back to a rational, nutritious diet. I suspect that as I return to a normal diet, my appetite will return as well.

Still, my sister made an egg-free chocolate cake with Ghirardelli chocolate chips especially for me. It was delicious. A frequent dream of mine sat before me in real life on a pie dish. I shared it with everyone, knowing that if I didn’t, I could eat the whole thing!

2013 Year in Review

I did more last year than I had in the previous several years. I even got to the point where I wondered if I was still disabled by the chronic tick-borne infections. Of course, each time I imagined that I might be stable enough to work again, I hit a major physical stumbling block. Something important came out of this repeated process. Each time I felt well, I decided to tackle Bartonella more aggressively, which led to herxing badly until it petered out and gave me the confidence to get even more aggressive.

Bartonella

I took 5 coiling breaks of about 2 weeks each. These breaks established the honeymoon pattern I described above. First few days I still feel bad, then suddenly the symptoms of Bartonella (and Lyme) dissipate for about a week, before they return. Each of the times I took a break, the honeymoon period was even better. During the first break, I felt like I had chronic fatigue syndrome, wearing out very rapidly, needing rest days between days of activity. By the Christmas break, I had my first week of normalcy in over 7 years.

The breaks confirmed something else that hangs as a question over everything I do with the machine. Am I healing as a result of the passage of time (as some who doubt anything that hasn’t been tested in a huge double-blind medical study might suggest) or is the machine really doing something. The fact that the herxes go away when I stop points to the fact that the machine is doing something. The fact that the herxes slowly diminish until I add coiling time (overall or to key body parts) when they get more intense, also suggests that the machine is doing something. The fact that I tend to improve more drastically with more coiling also suggests that the machine is strongly contributing to my body healing and the infection load dropping.

While I’m on the subject of Bartonella, this was the year when I realized that Bartonella is the key to my health. I think I’ve had it since I was a small child. I think it is the infection most embedded in my body. I think it has a strong presence in my brain. And I think that once I get it out of my body, my body will never be the same again. I will finally have a shot at overcoming the chronic problems I’ve had since childhood. I’ve seen glimpses of the changes to come. I can’t wait to see what life is like when I am finally Bartonella-free.

Provoking the Infections

In 2013, I got bolder. I got bolder about how much I coil, both for Lyme and for Bartonella. I got bolder as the herxes diminished and the flares died down, and my daily symptom load stopped being so debilitating. I made the decision that it was time to change my strategy from managing the infections to provoking them. Coiling doesn’t kill dormant (cyst-form) bacteria. So I decided to wake up the infection.

Provoking the infections meant letting go. I let go of most of the supplements, in a multi-step process, each step based on the success of the previous step. After I stopped a few supplements, the herxes got worse. I felt worse again. Both Lyme and Bartonella became more active and caused more symptoms. Within a few weeks of coiling, I was back to feeling how I did on all the supplements, not great but not bad physically. So I would stop taking another couple of supplements. Again, the herxes and infections got worse until my body got better again. I’m now taking only a few supplements: DIM to regulate my estrogen, Renavive to clear out the Bartonella herxes from my kidneys, and milk thistle to detox my liver. I’ll know that the Bartonella is gone when I can coil aggressively without taking Renavive and not have any kidney pain.

Provoking the infections also meant adding all the foods that cause inflammation back into my diet. I added back in wheat and other grains. I added in foods that contain malvin (like corn and berries) and foods that contain piperine (eggplant, potatoes, other night shade vegetables). I added back in cow dairy. All these foods still trigger some inflammation and consequently trigger the chronic infections. I discovered that when I coiled after eating these foods, the pain in my joints, the abdominal bloating, and much of the infection symptoms went away. As I continue to eat and coil, I notice that the resulting inflammation seems to correlate directly with how bad my infection symptoms are before I eat the foods.

The one food I haven’t tried thus far, at least intentionally, is egg. In 2007 and 2009, I had such huge reactions to egg that they still scare me. I had intense peripheral neuropathy, pain in my limbs, vision disturbances, balance problems. I worry that egg could trigger permanent damage, as suggested by an immunologist I consulted years ago. However, my body has changed a lot since then. And I suspect I accidentally consumed egg in early December, and I had a reaction in the nerves of my lower limbs that I don’t usually experience. It wasn’t as bad as it used to be. I’m feeling bold enough to eat eggs on purpose soon (like maybe today…) to see if I can coil away the reaction the way I’ve done with other foods.

Microbial Ecology

2013 was the year of the intestinal microbiome, not just for me but for the worlds of biomedical science and the mass media. I took advantage of all the new information. I already knew that years of antibiotics had destroyed my gut microbiome. I’ve been taking all sorts of probiotic supplements for years.

This year I made a more concerted effort to heal my intestines, and hopefully normalize my immune system as well. In addition to several rounds of high quality, high intensity probiotic supplements, I started eating cultured cabbage (live sauerkraut), continued to consume vast amounts of yogurt, and even began rotating in raw milk. My intestines do feel better, comparatively, though I don’t think things will fully get back to normal until the Bartonella is out of my system.

In one of my accidental experiments, I discovered that my abdominal bloating went away if I was eating sauerkraut and coiling a lot for Bartonella. Unless I did both, my abdominal bloating reappeared. Neither Bartonella coiling nor sauerkraut alone had any effect. I’m keeping that in mind as another marker to confirm the end of Bartonella’s presence in my body.

Hormones

My hormones reacted a lot to the increased Bartonella coiling in the first half of the year. I think I overreacted to what might have been temporary problems. I started having serious PMS, lasting 2 weeks, for a few months last spring. I read up on the topic and discovered that it could be an underproduction of progesterone. (My symptoms matched what one would expect.) Meanwhile, I wanted to stop taking Metformin, the last pharmaceutical I was on.

I used the opportunity to try using Vitex, a progesterone upregulator, to try to regulate my menstrual cycle. It went okay for a month, though I started gaining weight immediately. Then I added in DIM, which regulates estrogen (more similar to the downstream effects of Metformin). My cycle was normal for 2-3 months. Then the PMS started again and my weight ballooned up to 160lbs. I was done.

Vitex turned out to be a failed experiment for me. I suppose I can’t get everything right. I’m taking it in stride. I continue with DIM. This is my first full cycle on DIM alone, so the experiment is still in progress.

Physical Activity

This year I was more active than I’ve been before. It was fabulous to be able to hike, to play with my 2 year old nephew (including picking him up and carrying him), to go for an occasional run. These are activities I plan to continue this year.

Going up and down the stairs in the house I moved into in 2012 turns out to be good for my bones. I got good news about my bone density. I am no longer osteoporotic. I’ve increased my bone density to be osteopenic, which is still not great bone density, but I’m moving in the right direction.

The most astonishing part of the year was the day I got up and I felt stable on my feet. I can barely remember the sensation now, but I can remember what it was like before that morning. Starting in January 2007, I used to always feel that standing and walking were unstable activities and perpetually felt the urge to sit or lie down. I always felt like I might tip over or collapse. Then, one day, the feeling was gone. It happened shortly after one of the increases in Bartonella coiling. It might have been the event that made me realize that for my neurological system, eradicating Bartonella is the decisive factor.

Sharing what I’m learning

In 2013, when I couldn’t find old blog posts about particular topics, I realized I wanted a book on how to coil. Then I realized that, for better or for worse, I’m about as qualified to write one as anyone could be. So I wrote the first few chapters.

But 2013 also had its challenges. I have a hard time finishing things that I start. Every project (not just the enormous task of writing a book) seems daunting. I start out with energy, then I fall to pieces as I face renewed physical challenges or more interesting things to do or I use my energy to rebuild my body. The only solution I can imagine is to keep getting rid of the infections so I have more energy and concentration to do what I most want to do…like writing the Coiling for Lyme Book.

I’ve now written more than 400 blog posts. Clearly I have a lot to say, and I am able to keep coming back to the blog. So I’m hoping that in 2014, I find myself well enough to share what I’ve learned in a concise, useful way.

Looking Ahead

I have several goals this year (like completing the Coiling for Lyme Book and sharing it with you), a few trips planned, and lots of experiments in mind. But I’ve run out of typing ability for today.

Today is the first experiment. As soon as I finish writing, I’m going to have a cookie baked with egg as an ingredient. Then I’ll see what happens. I’ll observe (and experience) how my body reacts to the egg, then reacts to coiling the affected body parts. I’ll coil for both Bartonella and Lyme. Then I’ll tell you all about it.

Disclaimer

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