Something happens when you have a chronic illness. The illness itself wears you down. With a relapsing illness, like the tick-borne infections I carry, the relapses wear you down even more. I’ve been struggling with being worn out for months and months. What I’m looking for is the inner strength I’ve previously called upon to fight back until I achieve another remission.
For those of you who have been following this blog for a long time, you know that I was doing quite well about three years back. The only symptoms I still had were from Bartonella, and these were minimal. I thought I was near the end. I had energy most days and my pain level was low. I was coiling for Bartonella, but I couldn’t seem to get it into remission. I decided to try some other things, with the hope that I could get everything into remission and attempt to get pregnant. As with all things Lyme (or tick infection related more generally) my plans went awry. I had a relapse. By the time I started the antibiotics recommended for use before and during pregnancy, all three of my confirmed infections were active again: Lyme, Bartonella, and Babesia. I was angry at myself for the relapse, but I was also at a point where I knew that waiting (and trying to get them under control through coiling for another six months to a year) meant giving up on ever getting pregnant.
Fast forward through two years of antibiotics and no pregnancy. The past eight months, since I stopped antibiotics, I’ve slowly gone back to coiling. But my heart hasn’t been in it. I know what I need to do. I’ve spent countless hours coiling for Babesia using the same frequencies that gave me remissions in the past, remissions that lasted three to six months or even longer. This time around, the remissions last less than a month before a migraine and a series of night sweats pile onto the kind of fatigue that keeps me horizontal all day long. I knew that coming off antibiotics, I would need to do some serious cyst-busting and biofilm-dissolving, otherwise I could wait years while the Lyme and Bartonella slowly woke up to be killed. I knew this in June when I stopped antibiotics. I saw it happening in real-time. Whenever the Lyme wakes up, the Babesia wakes up. Whenever the Bartonella infection is active, the Babesia infection activates. And yet, it took me until last week to start the serrapeptase I bought back in June. Basically, I’ve been treading water and making no progress against the infections.
Procrastination and Learning
This isn’t to say that I’ve been doing nothing. Long-term antibiotics cause real damage. It’s different damage than the infections cause, but there is healing to be done from the antibiotics as well. While I’ve been endlessly coiling, I’ve been learning more about nutrition. I’ve learned about more than just avoiding sugar and processed carbs to combat yeast, and eating probiotics to repopulate the gut after the antibiotic slaughter of the intestinal microbiome. I’ve been reading about how to vary vegetable intake to introduce a variety of micronutrients and the benefits of short-term fasts. I’ve read about diets for reduced inflammation and improved immune function. I’ve tried out some of these diets and incorporated the things that work into a diet I can handle when I’m not trying to be “on a diet.”
When it comes to coiling and other treatments to use when coiling is not possible, I’ve been trying to come up with ways to keep the infections at bay while not knocking myself out with a herx. The other treatments I favor (for times when I visit my family in another state) are oil of oregano and sulforaphane glucosinolate. I don’t seem to loose ground while I’m on these, but I don’t get any better, and I don’t herx much after the first two or three days.
I’ve been do things that are not Lyme related. I’ve wanted to live an analog life, writing letters and stories, painting and drawing, being outside bird-watching and dog-walking. I haven’t wanted to think about how to get better or do anything extra to make it happen. I’ve just wanted a break to enjoy myself after the ups and downs of trying to make a baby and the unremitting symptoms that I had on antibiotics.
Letting Go to Move Forward
I read a ridiculous number of young adult books, especially science fiction and fantasy adventures. In a way, they help me escape from my own struggles. More importantly, I allow them to remind me that I’m the hero in my own story. As the hero in my story, I have to do the scary, upsetting, dangerous, or otherwise risky action to get to a resolution. Even if I am struggling now, even if I have been paralyzed for months, I am the only one who cure myself (even if “cure” means only “remission”). I have to be the one to decide to deal with the herxes. I have to be the one to try new treatments, or revisit old ones that worked before, and do so boldly. I have to keep track of what works and what doesn’t. I have to decide each day to move forward. When I don’t, I’m the one who suffers.
In addition to being tired of fighting Lyme, I’ve had something in the back of my head that has slowed me down. The way it usually sounds is: Don’t do too much. You aren’t ever going to get better, so you might as well do the minimum. That way you can do everything else that interests you. Unfortunately, doing the minimum over an extended period means I have to do more and more just to get out of bed in the morning. The real message has been: I didn’t get well in time to have a baby. If I figure it out now, it’s too late anyway. I’ll probably hate myself forever for not figuring it out soon enough for it to matter.
As you can imagine, that message has weighed on me. A lot. It wasn’t clear in my mind until the moment I swallowed the serrapeptase pill last week. I’d been doing a different kind of emotional work that resulted in my realizing how much of wanting to have a baby was wrapped up in my internalized societal messages about womanhood. During that process, I stopped fantasizing about being a mom for a month or two. The problem is that I still want it, which I realized when I went to visit a friend in January two days after her baby was born. I may never stop wanting it. But I’m also not ready to do anything to make it happen. At this moment, I get to be aware that it was my choice to stop trying, my choice not to pursue other means of either getting pregnant or becoming a mother in a different way. I have let go of the desperation. Now it is time to let go of the regret and see where I land.
It is also time to rededicate myself to getting well, not because that will allow me to have a baby or raise a child. It is time to get well because this is my life. I am the only one who can be my hero. I am the only one who can write my stories, paint my paintings, live my life. I am the only one who can be the expert on my body, decide what to try next to outsmart these infections, and share the experience with the community of Lyme survivors.
Taking the First Steps
Last week I called one of the people who makes coils compatible with the Doug Coil Machine that I use. That call broke the ice. I’d been avoiding it for a few months, even though I knew I wanted to try 1583Hz for Babesia. The coils I have get hot very quickly at that frequency, meaning I can’t coil enough to see if the frequency works. Just making the phone call was the first step in getting out of this rut. I ordered a coil with a smaller inductance.
That very night, I busted out the serrapeptase enzyme pills. I started at half a dose. The next morning, I couldn’t turn my head. I must have a lot going on in the nerves in my neck. It was wonderful and horrible. I spent the day coiling for the usual Babesia, as well as doing Bartonella and Lyme on my head, neck, shoulders, and upper back. I coiled each of the infections several several hours apart from each other so I could see which one the serrapeptase had awoken. It turned out to be Bartonella. I learned something new with that step. I’ve continued to coil for all three infections because after two days, I went to the full dose of serrapeptase, and it seems that all three are affected by the enzyme. I ended up with a migraine after a few days (Babesia). My joints have been popping and creaking and stiff (Lyme). And I have tingling in my limbs and crazy muscle tension (Bartonella). I’ve needed to do this for a while, and I’m glad I’ve started. I keep reminding myself that you can’t get to the end until you start. Now I’ve started and I’m no longer worried about the end.
Yesterday, my small coil arrived. I tried it last night at 1583Hz. No night sweat and I felt a little less tired this morning. I’m using it again today with my longer term protocol which involves coiling Babesia three times a day on my blood stream, plus everywhere on my body that has red bone marrow or an organ. If the Babesia symptoms stay gone for three weeks, then I’ll reduce the Babesia coiling schedule while I work on the other two infections. But if the serrapeptase keeps all the infections in a state of flux, then I don’t mind coiling for Babesia. I’m finally ready to take another crack at these infections.