When I started having symptoms, but before I knew that I had an infection, I mostly tried to eat well, rest a lot, exercise when I could, manage my stress levels, and sought out an acupuncturist. This kept me going for several years. I didn’t take much in the way of supplements or pills, only PB-8, a probiotic.
When I got really sick, all I wanted was to know what was going on and to suffer less. Over the first two years of being severely disabled, I also wanted to do what I could to rebuild my body, which was extremely weak. I avoided analgesics because the mild ones did nothing, the heavy-duty ones had horrible side effects, and honestly, pain was only part of the problem. Masking it could not help me understand what was wrong or how to heal my body.
Once I started treating Lyme, I learned a lot about the supplements and other healing activities (like saunas) that make life less miserable while taking antibiotics. While I was on antibiotics, I gladly took anything that boosted my immune system, helped me detox, and rebuilt my damaged body. When I transitioned to coiling, I started knocking out a lot of the supplements, in the hopes that the Lyme could come out enough to be killed off. But I kept taking the rest of them because I already felt bad and I didn’t want to feel worse.
Over the past two and a half years, I’ve improved tremendously. I walk normally. I have stamina most days. I have fewer days of moderate to severe pain. I’ve gotten stronger, literally, my muscles have more power. I have my bad days. I still get herxes, especially from Bartonella. I hold my breath and remind myself that the herxes pass and with time they get less intense. That has been the pattern with all the infections I’ve treated so far.
The thing is, other than coiling, I’ve been reluctant to do anything else that might make me feel worse. I can imagine a scenario where I keep taking all the pills I’m on now. I keep coiling until the Bartonella herxes stop. Then I feel good most of the time and when symptoms crop up, I go back to coiling. It would be a plateau, of sorts, with edges all around. So maybe it would be more like the huge rock pillars of Meteora, Greece, where I’m at a higher level than I’ve been, and I can stay stable, as long as I don’t stray from what works.
I’ve met people who have found their own ways onto a plateau of sorts. They perpetually have low level symptoms that they feel they can live with. They continue to do some kind of treatment: low-dose antibiotics, herbs, supplements, iv IG. From their perspective, they’ve conquered the tick-borne infections. And, since they have put their lives back together, I suppose they have.
But there is something unsettling about that situation, as though they know that one false move, one traumatic event (food poisoning, car accident, flu, death in the family) and the infections will come roaring back. In other words, they can see that the plateau has an edge that must be avoided to prevent another fall.
I don’t want to live like that. I want to get to the stable, wide ground, where I can run free and not be looking over my shoulder all the time. I feel like I’ve read as much as I could about living with and managing Lyme. I’ve read all I can about maintaining a fairly healthy state, long-term, and what that requires. I can even say that my life has gotten lots better between coiling and all the supplements. With respect to coiling, I’ve heard of one person who coils two or three times, twice a year. Then her symptoms go away for about six months. But she never finishes. And, I gather she still takes lots of pills to make sure that her body stays strong and the symptoms don’t come back. But that kind of life sounds oppressive, and, quite frankly, as precarious as being on low-dose antibiotics.
I want to escape, in some sense, from the oppression of these infections.
The Fire Swamp
This brings me to another image: the Fire Swamp in the Princess Bride. Wesley and Buttercup have found each other. They are in beautiful surroundings. The sun is golden. A little bit away, the fields are green and inviting. But they have Prince Humperdink on their trail. They can’t stay where they are. They can’t escape to the beautiful areas. Either of those choices will lead to Wesley’s immediate death. Their only viable choice is to head into the fire swamp, with all its dangers and suffering, with no promises of what they will find if they make it through to the other side.
I have had my moments of golden sunshine. I’ve felt how good it feels to be strong, to be able to eat strawberries, to go for a run, to have a full day with little pain and only minor physical problems. Part of me wants to run towards that golden sunshine, knowing full well that Prince Lyme will catch up with me and kill me on sight.
So I choose instead to go into the Fire Swamp. I’ve got the plan worked out for cutting out more and more of the pills that make my life more bearable, easier even, on a daily basis. Instead of flame spurts, lightning sand, and R.O.U.S.es, I’ll be facing heart troubles, intense fatigue, loose bowels, dizziness, headaches and more. In fact, I’ve already set foot in the swamp, and these symptoms have started.
What I hope to find on the other side is my escape route…preferably without a detour to the life-sucking torture contraption, The Machine. There are no promises. It is unclear that if I go through all this–the reduction in infection-suppressing supplements, the increase in symptoms–that I will really, truly rout these infections. But I know for sure that if I don’t do it, I will carry these infections around forever. Prince Humperdink and the six-fingered man will find me and kill me.
I wrote all this out, and argued for my present course: reducing the supplements and trying to get rid of the infections, ultimately, by using my coil machine. Beyond my fears of going through another round of heavy symptoms and crappy days, I recognize that it is a risky move. I think it would be perfectly legitimate to stay on all the supplements, especially until the Bartonella seems gone, and coil a few times a year when mild symptoms cropped up.
If I did that, I would get to finishing my book about coiling much sooner. I would be able to figure out my next move vis-à-vis working again. I would get to feel healthy for an extended period of time.
The coiling book would have a different ending than the one I’m hoping for. But it would still be a good life.
Yet, I chose to take the risks associated with reduced supplements, increased symptoms and suffering, and a longer time before I feel healthy. I do so because I want to be healthy, for real. I want to be able to move on. To get to what seems like an almost mythical state: post-Lyme.
Nuts and Bolts
Just over a week ago, I started reducing my vitamin C and my alpha lipoic acid supplements. Now I take only 1000mg of C and no ALA. All week, the symptoms were creeping up: joint pain, loose stools, intermittent fatigue. Last night it hit me for real: weakness in all four limbs, compression and an ache in my chest over my heart area, rapid heartbeats and pounding in my chest, somnolent fatigue, fuzzy-headedness and generalized pain. The Lyme is clearly awake again.
I coiled for Lyme today. Each time I coiled, I had a few minutes of relief. I will get to coiling my head after this blog post. But I still feel pretty bad, overall. My chest is bothering me a lot. I spent several hours trying to take a nap and instead lying down listening to the radio. I couldn’t move. I couldn’t focus my eyes on anything. The floaters have tripled or quadrupled in intensity since Friday. All the physical stuff is getting to me.
Meanwhile, with the exception of today (because I only have one coil), I’ve been coiling my central nervous system for Bartonella. Those herxes have morphed in a way similar to what has happened each time I’ve tackled it harder. The intense headaches are gone. Instead I have insomnia, waking up with intense dreams of unsolvable problems multiple times a night. I have more neurological pain, tingling, hotspots and numbness in my arms and some in my legs as well. The kidney pain is less during the day, but starts up again every night and lasts a few hours in the morning.
I suppose the reduced supplements may be allowing the Bartonella, not just the Lyme, to become more active. Let’s just hope the Babesia doesn’t wake up at the same time…