During the year and a half that I was on antibiotics, I struggled to continue the projects I’d been doing. Backing up to the time after I stopped coiling, I began to slowly relapse and struggle with the projects I was doing. I was working on a novel and taking online writing classes. I was blogging. I was going for long walks and thinking about trying to increase the amount of exercise I was doing. I was dreaming about becoming an author and a mother.

The relapse made things a lot harder. My life shrank as the pain and other symptoms began to limit my daily life. Once I started antibiotics, I hoped I would get back to where I was the last few months that I was coiling. It didn’t work out that way. I never got back to the level of energy that I had after five years of coiling. All the months on antibiotics, I never reached past the point where I could do more than one activity per day. If I wanted to cook, I did it in the afternoon and I was done for the day. If I went for a long walk, that was it for the day. If I did some writing or anything that required mental energy, that was my activity for the day. Using the computer gave me the kind of headache that prevented me from doing anything the next day. So I rested a lot. Days pass quickly when I have no energy.

Analogue Life

As I started to feel better, almost a year into using antibiotics, I wanted to do something with my days. I was writing short stories (and long ones) on paper, as well as children’s stories for my niece and nephew. It then came time to illustrate the stories. I don’t draw well, but I had something I wanted to try. So I took a class in watercolor painting.

I managed to illustrate one book for my niece and sell a few copies to friends in my class. With time, my painting is getting better. Now I want to learn to draw.

Among the stories I wrote, I entered one in a contest at Bookshop Santa Cruz, a local independent bookstore near me. I won third place for my story, “Something to Chew On.” I’ve been invited to read my story on the radio this upcoming Tuesday. You can read my story here, and listen to me being interviewed here (Tuesday May 29th episode starting at 7 1/2 minutes).

In my compulsive need to make things, I’ve been crocheting on Star Wars figures. Most come from a collection of patterns, but I’ve made one of my own (Phasma) and I have another one in mind. Whatever is done by the end of August will be displayed at the county fair.

During my sojourn on antibiotics, my husband’s son moved into town with his puppy. As I got well, I started to hang out with the puppy, and when the second came along, with both puppies. They have enjoyed my better health, and we can now go on 90 minute walks. We don’t actually walk for 90 minutes, there are lots of breaks for sniffing amazing scents on the ground. (I don’t do any of the sniffing, I just rest.) Part of the walk usually includes a stop at Kelly’s Books, another local independent bookstore, that isn’t too far away and is very dog friendly. The walks used to use up most of my energy for the day. But now that antibiotics are no longer my primary mode of treatment, I rest with the puppies when I get home…then I have energy again to do something else.

I guess that just being able to go for a big walk 3 times a week is a win in itself. Despite the limitations of antibiotics, the longer I was on them, the more I found myself able to do things. They work at least as slowly as the coil machine in moving me towards my pre-relapse state, but there is noticeable improvement over time.

Reunion

My 25th high school reunion is next weekend. I’ve decided to fly back to NYC, see some friends and family, go to the reunion, and then head south to Virginia where my immediate family lives.

I went to the Bronx High School of Science. I was smart, fast, and motivated. I seemed to be one of the kids with a lot of potential. That was true of me for most of my college years as well. But like many women, as we are now acknowledging in the #MeToo movement, I got thrown off track by sexual abuse. Then when I’d more or less recovered, more bad stuff happened in grad school. I landed on my feet again while working for a labor union and did some pretty amazing stuff while I was there. Then Lyme Disease was the third strike. I’ve been away from the working world, and making an impact in the big ways I once did, for about 11 years. That’s not quite half the time since I graduated high school.

Because of the school I went to, I know that there are lots of bright classmates who have gone on to do BIG THINGS with their lives, and are at the top of their professions right now. It was not a trivial decision to show up after 11 years out of the workforce (paid, or unpaid as some of the full-time parents are). I decided that it is important for people with invisible disabilities to be present in activities with people who are not disabled. I also think that people with Lyme need to be public. That way we aren’t just a news story, but someone-you-know who has been affected by it. Without visibility, we’ll never get the research funding for an effective cure.

After these years of Lyme, I’m mellower, slower, more creative, and more understanding. These are attributes I will bring with me. I’m also still a dreamer. I haven’t given up on trying new things, as well as returning to big projects that aren’t finished just yet (editing that novel is still on my agenda).

Cleanup

After over 2 years of limited functionality, my life is in piles. For the past several weeks, I’ve been spending some afternoons dealing with my office. I kept buying books, even though I wasn’t reading as fast or as much as I did when I was coiling. I knew I wanted to make visual art and so I purchased, in bits and pieces, quite a few supplies. I have paper from short trips, mail, and odds and ends that had no place to live. I’ve made a big dent in the piles on the floor. Now it is time to get through the piles on my desk and file, process, or get rid of all the things that have been waiting for my attention.

It’s also time to clean up my attitude. In a previous post I wrote that I’m looking for a sustainable way to live with Lyme Disease. This is true. But I haven’t given up on the possibility of a cure for Lyme Disease. I’m now convinced that antibiotics will not lead to a cure but they can improve quality of life. I’m pretty sure that the coil machine can get me very far, but not necessarily to the level of cure that prevents relapses. But there is a big world out there and lots of smart people who could be working on tick-borne illnesses. I think a cure is possible in my lifetime, and until then, I want to get and keep myself as well as possible.

Haemophilus Trial

In the spirit of making myself well, I did a short trial of 542Hz for Haemophilus. Since the bacteria inhabits mucus membranes, I coiled my abdomen (5 minutes), my chest (10 minutes), and my head (for my nasal and gastric passages) (4 minutes). Coiling once a day gave me immediate coughing fits and delayed loose stools (herx?). Coiling 3 times in one day gave me coughing and increased mucus production, a massive headache, as well as even worse loose stools the following day. The following day I had no irritation in my airways, quite a relief from constant bronchitis. However, I couldn’t keep up the 3 times a day routine because I’m still trying to get the other infections back into remission. Thus the bronchitis is back, for now.

What I learned is that 542Hz is a good frequency for bronchitis, but that it will require dedicated coiling, possibly for a few weeks to a month, to reach the point where the infection is gone or in remission.

Coiling and Antibiotics

In the meantime, through the record I keep offline, I saw that Lyme and Bartonella are waking slowly in the period after I stopped antibiotics. I remember reading something by Brian Rosner where he said there is no point in coiling for at least 3 months after stopping antibiotics. I disagree with him that there is no point. It may take 3 months for the suppressive effects of antibiotics on chronic infections to wear off, but during those 3 months I can kill the infections as they wake up and keep the symptoms to a minimum.

Since I am traveling only a month after stopping antibiotics, I’m going back on them for the two weeks that I’m away. I don’t want to end up in really bad shape for my reunion, or frankly at all, because the infections are coming to life and I’m doing nothing to fight back. So my three months will begin again in mid-June. If I’ve learned nothing else in the years of dealing with chronic infections, I know that starting over is something I can do. Each time I start over it is with more knowledge and experience. Maybe I can do it smarter this time.

• Tethered
• Antibiotics Survival Guide

Categories: healing process, Herx reactions, iatrogenic complications, using the coil machine

Tags: haemophilus, invisible disabilities, lyme

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