h1

Lyme Ideology

Saturday, January 30, 2016

I am in a moment of transition. I promised myself that I would only use the coil machine for five years. It wasn’t a random number. Someone told me that I’d be “better,” as in “free of tick-borne infections” if I coiled for five years. The end of the fifth year is right around the corner.

Five years also seemed like a long time (though I’d been out of work for 4 years and on antibiotics for three of them) when I started out. I thought that I might never get well enough to to be free of daily pain with relentless fatigue, digestive problems and sleep difficulties. Five years was a reasonable number, shorter than forever, as long as things improved along the way.

At the beginning of coiling, I was only committed to three months. If I didn’t see any difference in that time, I was going to sell the machine. Three months came and went, and I was seeing big changes (though not exactly big improvements).

After a year I had my first Babesia remission. I felt like a new woman: still sick and disabled, but no longer an afgan permanently draped on the couch. Next I got the candida out of the places where it shouldn’t grow. That helped reduce other symptoms. Eventually, I had short Lyme remissions. Those were great. Otherwise, I’ve been able to keep the symptoms mostly minimal by coiling 1-2 times a week for Lyme. The symptoms of Bartonella have lessened. The herxes from Bartonella are less intense. But the Bartonella herxes kick up Lyme symptoms, so I’ve been stuck in a slow improvement cycle with no end in sight.

Five years is almost up. I keep coming up with reasons to coil only twice a day, when I know perfectly well that to get to the end of Bartonella I need to do three sessions a day. I feel like it’s the last semester of high school or college. I can’t believe I still have a few more finals and papers to write. I just want to be done already.

I also recognize that Bartonella herxes convince me, time and again, to do something else, to get distracted on another treatment, to coil less. So I’m trying to give myself a new narrative: a long race in which I need to sprint at the end. Coiling three times a day for one more month might make all the difference in the world, or at least, it won’t be worse than it was in previous months and years.

Five years also has a different significance. I knew that if I ever got to the point that tick-borne diseases no longer monopolized my life, I wanted to find a partner and have a child. I fell in love with Joe, who is a most fabulous partner and husband. I can’t imagine my life any other way. And now that I’m 41, there are non-Lyme biological factors pressing against my desire for a child. So I’m going to coil for one more month and move on.

Auto-Immune Mental Gymnastics

Occam’s Razor states that among competing hypotheses, the one with the fewest assumptions should be selected. This idea came to mind when I went to see a naturopath that I’d previously worked with to talk about what I can do to ensure that if I get pregnant, the child will be healthy, specifically that I won’t transfer the tick-borne infections. I also had questions about what to do to keep myself healthy during and after pregnancy, including about the osteopenia/osteoporosis I have in different bones of my body.

While we had a productive conversation about supplements (he recommended OsteoPrime and gave me some other suggestions of varying usefulness), he said he didn’t think I have Lyme anymore because I’ve done so much treatment. He went on to explain that after years of Lyme treatment for himself and his patients, he has come to the conclusion that Chronic Lyme Disease is an autoimmune disorder. (He said he knew his idea “isn’t popular with the ILADS crowd.”) His main reason for this conclusion is that he’s had success in reducing symptoms with low dose immunotherapy, or LDI, as pioneered by Ty Vincent, a physician in Alaska. I pressed him on it. I wanted to know if this was merely a way to shut down an appropriate response to a persistent infection. He claimed first that the infection was no longer there, that the immune system was attacking itself like it does with rheumatic fever (where one particular strain of strep infection causes the body to make an antigen that cross-reacts with heart valves). Then he said that if the infection was present (which it might be because he can’t prove either way with current tests) that at least the symptoms will go away because the symptoms come from the immune system’s response to the infection, not from the infection itself.

My first question was: if the infection is gone and LDI “resets” the immune system, why do you have to “reset” it again every 2 months? (No good answer, but the treatment seems to work for only 7 to 8 weeks at a time.)

Then I told him that my experience with the coil machine, which does not suppress the infections, is that they remain active, that I’ve been able to reduce the level of symptoms and herxes, yet there are still flares, either seasonally or with certain food triggers. I thought it was a bad idea, if there is even a possibility that I still have the infections, that I would do anything to weaken my immune system or prevent it from fighting them off. He reiterated that he thought all the people with CLD don’t have infections anymore. No evidence, just his “belief.”

He asked me how I thought the microbes could possibly survive in the body for so long. I mentioned the immune protected places (which he listed as CSF, joints and eyes) where dormant forms or intracellular forms can survive, unaffected by either the host immune system or antibiotics delivered by the blood stream. He then told me that I shouldn’t worry about infections in those places because they couldn’t affect a baby. I said that I thought flares happen when these microbes become active, and in that case, they may temporarily be in the blood stream, giving them access to infect a fetus. His response was two-fold: first, if antibiotics, which are smaller than bacteria, can’t get into these tissues, that the bacteria can’t get out. (I listened at this point because he no longer could hear what I was saying, but I thought, if they can get in, they can get out, usually by a process other than diffusion.) He said he was a microbiologist, so he knew better than me. (I checked his reasoning with an immunologist friend who couldn’t stop laughing at his faulty “logic.”)

His second rationale was that there is “no proof of mother to child transmission of Lyme.” I just stopped talking at that point. Then he went on to explain that blood tests will give false positives while the mother’s antibodies are circulating in the blood stream and false negatives after because the child was supposedly exposed to the bacteria before birth. Besides that, antibiotics will permanently damage the microbiome of the infant. Then, he further explained that it is really obvious when a child is born with Lyme because they have almost immediate neurological problems. (You can see how I stopped trusting him as he contradicted himself.)

When I was in high school, I was on the debate team. There are four necessary elements to a debate: a question (or resolution), an affirmative side, a negative (or opposing) side, and a judge. We had the question. We had opposing arguments. But there was no judge. I knew that I wasn’t being heard because his mind was made up. So I had to stop, not even responding when he said: “You know, people with Lyme just get so scared so they’ll believe anything.”

Needless to say, I won’t be going back.

But I haven’t been able to let this go, six days later. I reflected on the conversation and noticed that as I accused him of being ideological, from his perspective, I was being ideological. We were both speaking from personal experience. We were both having some success with treatments that accomplish opposite ends.

I looked up LDI, as I had done when I heard about it over the summer and again before seeing the naturopath. As best I can tell, people herx when they take it. Then their symptoms go away for a while. Maybe the enzyme additive has a bactericidal property as well as an immune suppressing property. I can’t be sure. I can say that anything gets better but keeps coming back and causing symptoms is a foreign agent and probably not purely the body attacking itself. (I think this is true of rheumatoid arthritis and multiple sclerosis, rather than seeing those diseases as proof that CLD is autoimmune.) But I recognize that mine is an opinion and that others look at the same patterns and come to an opposite conclusion.

All this pondering and self-questioning about my conclusions bring me back to Occam’s Razor: among competing hypotheses, the one with the fewest assumptions should be selected.

My hypothesis is that persistent Lyme and tick-borne infection symptoms are caused by persistent infections. The assumptions:

  1. There has been an acute infection that generated symptoms.
  2. Some of the microbes are not killed by antibiotics.
  3. Surviving microbes live on in tissue that is not affected by the immune system or antibiotics.

The autoimmune hypothesis states that persistent Lyme and tick-borne infection symptoms are caused by an autoimmune dysfunction. The assumptions:

  1. There has been an acute infection that generated symptoms.
  2. Antibiotics can penetrate all tissue that the microbes are known to infect.
  3. All microbes have been killed by antibiotics. (Or any remaining microbes cease to cause symptoms.)
  4. The microbes cause the body to generate antigens that cross react with host tissue (though this has never been shown in a lab).
  5. The body never ceases to produce these autoimmune antigens (or other autoimmune agents).

Just based on numbers, my hypothesis has fewer assumptions. The assumptions themselves also seem less suspect, given that in autopsies, bacteria from Lyme and other tick-borne infections have been cultured from the tissue of symptomatic patients who have been extensively treated with antibiotics.

So my working hypothesis may be ideological, but it is also logical. And from the perspective of someone who could transmit the disease (if might still be in the body) to a fetus, it is the more conservative hypothesis.

Snowshoeing

As I wrote almost 2 weeks ago, I’ve started physical therapy for the litany of problems and persistent pain in my left foot. After the third session, during which the therapist massaged up a tight section of my left calf, my ankle was released. The pain was reduced by an order of magnitude. I could walk a lot better.

Two days later, to celebrate my birthday, Joe and I took a friend up to Badger Pass in Yosemite to enjoy the snow. While they spent the day skiing, I spent an hour and a half snowshoeing. (Or 45 minutes snowshoeing and 45 minutes listening to a ranger talk about what we were looking at.) And the rest of the day in a tired, happy stupor.

Walking in a path behind 10 people makes snowshoeing a lot easier.

Walking in a path behind 10 people makes snowshoeing a lot easier.

It was exhilarating and exhausting. I did my prescribed stretches that night. Then I got up and walked around the valley the next morning before the rain came. My friend and I found a flock of Clark’s Nutcrackers. Their black and grey were striking to see against the cloudy white sky and the snow that covered everything.

This bird was part of a flock that pecked at the ground under the trees where the snow was melted and hopped around from branch to branch.

This Clark’s Nutcracker was part of a flock that pecked at the ground under the trees where the snow was melted and hopped around from branch to branch.

I overdid it, and every step in the beauty and nature was worth it.

Symptoms, Flares, Coiling and other treatments

I came back and my foot is bothering me again. The physical therapist wasn’t able to recreate her miracle. But she made the pain calm down with an ultrasound treatment. I also went to an acupuncturist. She was able to get rid of a crazy neck-shoulder-upper back spasm on the left side that I had been treating (to partial relief) with a heating pad. The acupuncturist recommended Topricin for my foot. It hasn’t worked all that well on my foot, but I left in on my hands and my knuckles feel better. (As long as I reapply it twice a day.)

The January Lyme flare has begun. All my joints are popping. Eating wheat makes my ribs hurt. I’m tired in the afternoons. I had a few days of loose bowels when the flare began. I’ve had a few shock sensations go down my legs and uncontrollable twitches in them. And for a day I had acute nerve pain on the top side of my forearms, extending down into my middle and ring fingers. I feel Lyme-y but it isn’t that bad. I’m coiling every third day and letting myself stay symptomatic in between.

I’ve been coiling for Bartonella twice a day (once on Lyme days), and my kidneys barely ache. I’ve had some tingling in my arms and legs, but nothing that lasts very long.

The persistent problems are the bursitis and nerve pain in my left foot and the brainfog that comes without warning. I can’t believe that I didn’t realize I had it before. If anything, it is a testament to how much better my baseline brain function has become.

Since I can’t go for walks, I’ve been doing 10 minutes of yoga in the morning. I’m hoping that as my foot gets better, I can exercise again.

I’ve been playing around a little with essential oils in an attempt to calm my left foot. Nothing has worked well, yet. (Some things, like peppermint oil, made it worse.)

And I’ve decided to order the Alfons Ven Lyme package, despite my reservations, as something to try when I stop coiling.

Disclaimer

One comment

  1. It’s unfortunate that there are people out there making hypotheses about Lyme without a proper understanding of the stealth nature of the illness. The naturopath seems lacking in the knowledge that Lyme disrupts the immune system thus making the microbes difficult to kill with antibiotics. There was no mention of the bacteria’s ability to protect itself by forming cysts and then going undetected by an individual’s immune system. If we boost the immune system, we may have a stronger immune response, but if we have not addressed the hiding microbes, how can that possibly help in the long term? I’m glad you are not going back. I went to three LLMD’s before I found the one I trust, and one of then was a naturopath who gave me significant misinformation about Lyme disease. It sounds like you are an intelligent woman, and able to decipher the literature. Trust yourself. Those of us with Lyme often know more about the illness than many of those who propose to treat it. And all of us know more about our own bodies than any practitioner out there.

    Lastly, I transmitted Lyme co-infections to my son in utero. His symptoms largely manifest as ADHD. At age three he was also bitten by a tick and that’s when his symptoms really exploded. I’ve had to focus on my own treatment because I’ve been so ill. Still, I wouldn’t say don’t have a child because you might pass on Lyme. There is no way to be a parent without passing on some of your own shit to your child whatever that may be. It may sound cavalier, but my son is so precious and he was meant to be in the world, with Lyme or without. And if you get pregnant and you have a child who has Lyme, you know how to treat it. Lyme is a dream stealer. Don’t let it steal yours.



Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: