Resuming Antibiotics for Lyme-Induced Multiple Sclerosis (MS)

© a rainbow at night

In case you missed it buried within my last post: I learned I do have multiple sclerosis. My neurologist said the official diagnosis as of right now is “Clinically Isolated Syndrome,” which can present with or without optic neuritis. Mine presented with, but I recovered well from that attack and my ophthalmologist confirmed there is no permanent damage to my optic nerves.

CIS and MS are the same disease process, but since MS literally means “multiple scars,” CIS is what you call the first episode, because there are a few people who never go on to develop another attack. But that wasn’t actually my first attack, or even my first documented attack. Because I refused to get a spinal tap at the time, the last lesion was attributed to “post-infectious demyelination” or “atypical MS.” They wanted to test my cerebrospinal fluid for Lyme antibodies at the same time as MS markers, and I couldn’t afford to risk a false-negative Lyme test, which my insurance could’ve used to deny coverage for my antibiotics. I have personally watched someone have their treatment revoked until they did additional spinal taps to prove the bacteria were there, and there was no way I was going to chance that happening to me, as horrendously ill as I already was.

I’ve had about five neurologists since 2008 because they keep moving, so my current neurologist is under the impression this is only my first attack, hence the CIS model. Most doctors rigidly hold the belief that neuroborreliosis (Lyme disease that has spread to the brain and spinal cord) and multiple sclerosis are not related, so my “official” diagnosis will change depending on which doctor I see and their level of understanding about my history. At any given time it’s one or more of the following:

  • Post-infectious demyelination
  • Clinically isolated syndrome
  • Multiple sclerosis
  • Atypical MS
  • Relapse-remitting MS
  • Neuroborreliosis
  • Inflammatory disease of the central nervous system
  • Demyelinating disease of the spinal cord
  • Disease of nerves in arms, legs, hands, and feet (what even is this diagnosis?)
Image from “LYMEPOLICYWONK: Misdiagnosis of Lyme disease as MS” by Lorraine Johnson, JD, MBA, and the Chief Executive Officer of LymeDisease.org. Click for more information.

Without medication, I regularly and predictably relapse about twice a year, about 5 months apart. I think the reason for this is, when my immune system starts to run out of options against the accumulating spirochetes, I usually develop a bacterial infection and require a short course of antibiotics, and those antibiotics also beat the Lyme back into remission for about 4-5 months max. But then the bugs build back up again, and my immune system gets stressed again, and I can’t fight off another bacterial problem again, requiring another short course of antibiotics which tithe me over for another 5 months… And so on. Rinse and repeat for the past five years since stopping Lyme disease treatment in 2012.

It wasn’t always so much like clockwork, though, for many reasons but largely because since “the big relapse” in 2012, I’ve only been able to tolerate an infant’s dose of antibiotics for maybe two days before my brain felt like it would explode. That is, until this year’s miracle happened:

In March, I was able to complete a 10-day course of antibiotics with absolutely no problem, for the first time since The Big Relapse. So, coupled with my new diagnosis, I decided to brave Lyme disease treatment again.

Yes, you read that correctly. What I wrote here five years ago has finally come to fruition:

“My friends say I can always begin treatment later after I’ve rested a bit more, but this is the equivalent of waiting until a cancer is stage 3 or 4 to begin treating. The disease is advanced, it’s harder to kill, and the treatment will be that much worse. … But regardless, this may be my only option, and all I can do is hope that with more rest, I will be able to begin treatment again in the future, and be able to handle it.”

My God, to be typing these words… There have been a lot of tears this past week. Over all my suffering, over all the life lessons learned, over all the years it looked like I would never make it here because of the constantly relapsing infections, over all the miracles that took place just in time, every time, so that I evaded further damage, and that I’ve actually healed from much of the damage already sustained… But mainly, over the fact that I am now here, having survived it all physically and mentally, and in a position where I am able to do something about it.

I made it.

And I’m starting treatment again.

We’re going to push it back into remission ON PURPOSE with an ACTUAL TREATMENT PLAN and an ACTUAL DOCTOR, not just skate by on whatever antibiotics I end up on, hoping it’ll be enough to fend off MS for as long as possible. The diagnosis is here! Time is up!


I’m doing pulsed antibiotic therapy this time–please research if you haven’t heard of it–because it turns out this is the best way to handle late stage Lyme disease that anyone knows as of yet. Continuous antibiotics may be necessary at first, but it will eventually come time for maintenance dosing instead of sustained eradication, because while chronic Lyme disease cannot be cured, it can be managed.

And please don’t come at me with your “it CAN be cured!” comments: People can be functionally cured, where the bacterial load is so low that it cannot cause problems, but there is no known way to permanently cure late stage Lyme disease, yet. It goes up there with all the other infections your body just learns to adapt to and live with, but which can cause problems again if conditions arise, and that is okay.

I wish someone had told me this when I first got diagnosed, but we truly are so much more advanced as a society in our knowledge of “chronic Lyme” than we were 11 years ago when I got infected. Back then, biofilms in Lyme were just a hypothesis, as was the idea that antibiotics were causing the bacteria to hide instead of die, both of which are proven facts, today.

It’s actually a comfort to know that even the strongest of bodies cannot keep these spirochetes under complete control, because it keeps in perspective that this is not just “my” body’s failure, or “your” body’s failure, but it’s not even a failure at all: It is the natural course of this disease to relapse and remit, and it is not your fault. There is nothing you were supposed to have done to keep it from doing whatever it’s doing, what it already did, or what it’s trying to do. I repeat, it is not your fault that you still have Lyme disease, and again, late stage Lyme disease CAN be managed. Alright.

Now, according to this 700 patient survey, only 55% of people with Lyme-Induced Multiple Sclerosis get better with antibiotics once the disease has advanced to this level. However, I’ve beaten the odds many times before, so I’m just going to do what I can do for as long as I can do it. This online research has many limitations but it does mirror the general consensus I’ve heard throughout the years.

Image from “LYMEPOLICYWONK: Do antibiotics help patients with Lyme disease who are also diagnosed with MS?” by Lorraine Johnson, JD, MBA, and the Chief Executive Officer of LymeDisease.org. Click for more information.

The reason for these hit-or-miss success levels is believed to be because killing the bacteria when they have already initiated an attack on your nervous system has the potential to further advance the disease instead of abating it, because when the bacteria die they cause an inflammatory reaction. Adding further inflammation, in the form of your immune system going in to clean up dead bugs, to an area that is already inflamed because the immune system is already active there, will make things temporarily worse. The $64,000 question is whether the brain will recover or is there so much infection that this additional inflammation caused by the dying bacteria will be just as bad if not worse than the inflammation caused by just letting the disease take its course.

People with tapeworms in their brain face a similar dilemma: Because a dead worm in your brain could trigger such a massive immune response to clean it up, many must simply live with the parasite latent in their brain instead of attempting to kill it, which could actually turn around and kill them, too. We need to realign our focus with living a good life, not becoming “bug free.” They are not mutually exclusive.

I couldn’t pulse antibiotics five years ago because treating bartonella was the priority, and you cannot do pulse therapy with bartonella bacteria present. They mutate far too quickly in their attempt to survive, and become resistant to the antibiotics used. Some antibiotics like Rifampin can lose their efficacy after just one break in treatment, rendering it permanently ineffective against the strains present. So, long story short, I needed continuous antibiotics for bartonella for about two years, with lots of complications, it still relapsed, and only starting IVIG two years later saved me. But before all the latter happened, I made it about six months on continuous Lyme-specific antibiotics–the same ones I’m on now–before I hit the infamous treatment wall and became too ill to tolerate absolutely anything. I.e. “The Big Relapse.”

(I feel like I repeat myself a lot here, but I know most people don’t have the time or energy to go back and read how I got here or why my treatment is taking/has taken this route. All that is available, though, if you’re interested–there’s a directory of categories and tags/content at the bottom of this site.)

We’ve no way of knowing how I’ll respond to things this time, but just based on how I responded to mere Amoxicillin at the beginning of this year, I think I stand a chance to respond favorably. I’m running out of time to do something here, regardless. According to my last MRI, there’s a potential “something” in the front part of my brain that they’re going to “watch.” I just did two spinal MRIs and should find out the results this week.

One amazing thing I learned, though–again, only by getting a copy of my MRI results–is that I have successfully REmyelinated! The biggest brain lesion from my first Lyme/MS attack is fully healed!! About a year or two ago, I suddenly realized I could walk in the dark again without falling over, which I hadn’t been able to do since my hospitalization around 2010/2011. I assumed my brain had found some way around this damage by using its innate plasticity (i.e. maybe it formed some new pathways to circumvent the lesion) but no! Even better! It HEALED!

I am so proud of my body and its resilience. It’s things like this that inspire and remind me that it’s not too late to heal, and that my body still prioritizes towards homeostasis and wellness.

I’ve finished my first pulse, and I already feel so much clearer in my head it’s ridiculous. I owe this entire post to those antibiotics. In fact the last several blog posts I published before this one were antibiotic-induced (haha), where I hadn’t been able to finish anything since they wore off. The only thing I managed to type for this post before starting treatment last Thursday was one paragraph that took me an hour and a half, that absolutely exhausted me and ultimately made such little sense I had to delete it altogether, anyway. But after antibiotics? I typed the entire draft of this post you’re reading, in one day. Another day was spent editing, and today I finished polishing it up to be scheduled for tomorrow morning. But go ahead and tell us, IDSA, how antibiotics don’t do anything for us, will you?

Experiencing this phenomena again essentially confirms to me (1) how I was ever able to maintain this blog all those years ago, and (2) why I steadily and progressively lost the ability to write the longer I went without antibiotics, eventually getting to the point where I could only post when I’d taken an antibiotic or two, or when I’d scraped together one paragraph per month until I had something legible:

All I ever needed was treatment for this disease.

Damnit.

Until next time,

Kit

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This one is for you.

[ estimated reading time: 4 minutes 27 seconds ] © a rainbow at night
Dear reader,

As you may have discerned by now if you’ve been witness to the longest unintentional hiatus this blog has ever undergone, my creative expression has been paralyzed lately. Not only due to the sheer mass of change, but the rate at which it’s taken place. That’s not the only reason by a long-shot, but it’s the quickest explanation I can give.

For the past several years, my posts have mostly read as a chronological account of everything I’ve experienced and how I’ve felt about it, generally accounted for as it happened. Up until recently, I didn’t realize the latter was actually a luxury, and one I could lose. Again, I’m circumventing a lot, but after a certain point that way of writing became impossible, because to write anything new first required procuring necessary back story; that itself became impossible, because I’ve been coping with unprecedented difficulties concerning processing and integration. How could I summarize for others what I was unable to decipher for myself?

There was also guilt involved. One post in particular I made last year was about finally experiencing an extended period of emotional stability after killing off the bartonella (infections). Yet fast forward and what came next were some of the most daunting and powerful months I’ve ever experienced, and they were anything but serene, anything but peaceful, with no stability, save for that quiet place inside my soul. I didn’t know how to magically jump from what I wrote before, to that, without any explanation in between. It was inconceivable. I was afraid my inability to appropriately narrate the explanation would make it seem like I’d just been avoiding my emotions until I could no longer keep up the denial and hit a brick wall. Which was not/is not true at all. Continue reading “This one is for you.”

Freedom to write…just not on Twitter.

After spending a week considering a one month break from Twitter (and other social media outlets), I “stumbled across” something I wrote two years ago on my personal blog when I first tried this. (I say “I stumbled upon,” but I do not believe in coincidence.) Almost exactly like now, I had just relapsed (the one that necessitated I stop treatment) and found myself needing to prioritize my energy in order to adapt to my new normal. I’m posting it here partially as a testament to my growth, partially to explain my current social media absence using words I’ve already written (no spoons!), and partially that others might identify with any of the struggles I had back then. But trust me, this is NOT an anti-technology rant!


Tuesday, 18th December, 2012

I feel a need to be more free in my writing and not always have it dictated by a clear “purpose.” I mean, obviously there is always an intent, but this All or Nothing mindset that has still somehow managed to stick onto my creative expressions is getting me no where.

I fear having a bunch of unfinished projects because in my brain I’ve associated that with something “bad.” It’s “bad” to not finish things, and it’s “bad” to start something new before you finish what you’ve already begun. And perhaps for many things, even most things, that’s true. How will you see what you can do if you don’t see anything through? But this isn’t a major life decision–it’s expression. The All or Nothing mindset was drilled into me since I was a child, but it’s time to evaluate why I think the way I think. Do I really feel that way, or do I think that because someone taught it to me and I never stopped to question it, question them? No, I get to choose which rules I live by, which ones will serve me, and my common sense says there are exceptions to everything.

If there is an option between writing nothing because you cannot write everything, or writing a little even if it might take a while to make sense… I don’t want my brain to implode from a lack of expression.

On that thread, I really am more focused and thinking in more complete thoughts since being off of Twitter. I didn’t tell many about that experiment and I wasn’t blogging again yet, so I’ll recap. I read this blog article–“I quit Twitter for a month and it completely changed my thinking about mostly everything“–and it struck me because of this section:

“I used to believe that time was the most important thing I have, but I’ve come to believe differently. The single most valuable resource I have is uninterrupted thought.
“I’ve realized how Twitter has made me break up my thoughts into tiny, incomplete, pieces-lots of hanging ideas, lots of incomplete relationships, punctuated by all manner of hanging threads and half-forked paths. I am perfectly fine with unfinished work-in fact, I doubt I’ll ever be a better finisher than I am a starter. But I’ve found that my greatest joy, deepest peace, and most valuable contributions come from intentionally choosing where to let my focus rest.”

After reading the potential for this social networking site to do that to one’s psyche, combined with the fact that I’d recently been putting thought into what purpose Twitter served me (something I feel is important to do from time to time; weed out what doesn’t bring you where you want to go), I had to try it for myself.

It’s barely been two weeks since I told everyone on Twitter I’d be leaving until the new year, and I haven’t tweeted since…save the automated ones that post from my health blog. I have logged in occasionally to see if there were any mentions or replies, but no. Is that unusual for someone with almost 200 followers that are otherwise pretty chatty?

One major part of Adam’s Twitter ramble was how much he CARED, and how the site was draining him emotionally because he couldn’t really do anything about the bits of information that were posted. I can thoroughly relate to this because my main use of Twitter was participating in the support system us “spoonies” formed. There are lots of tweets about suffering. (It was easier to release the thought there, where people at least understood, instead of “bothering” friends or making Facebook posts.) So sure, he wanted to do something for people, but–much like myself–he liked to show sincere care and do something real to help, and how can you do that for the hundreds of little tidbits posted? Truly, they leave more questions than anything. “Twitter is outsourced schizophrenia.”

And one major facet of people like us, the “carers,” is that.. we care a whole hell of a lot more than most, meaning we get close to people and form connections with them easier than most. This is never clearer to me than when I leave behind any social networking platform I’ve ever used: I want to take people with me, but they don’t care where I go. I want to keep in communication with those I’ve formed bonds with so I leave e-mail addresses or new account locations, but they never contact me again.

And it is what it is, truly. I realize people are meant to come in and out of others’ lives. But the fact is I end up caring about others far more than they care about me, which–in Twitterland, especially–means I extend energy toward irreconcilable situations and incomplete relationships. This is not something that is conducive to what I want, need, and am entitled to as a human being. (Maybe, too, I’m just from a different time, before the internet when people called and wrote and relationships weren’t so throw-away.)

And my thoughts, it’s like they all had their potential to become something, but the goal really did become fitting them into character limits instead of expanding them. It filled the temporary niche for an expressed thought, but then it died there. Did I explore any introspection or make blog posts when I was on Twitter? No. (Of course there were other reasons I haven’t been blogging on this account, but.) It’s honestly kind of amazing, when you think about it.

I do miss Twitter, though, for when I REALLY DO have tiny incomplete thoughts. I must have been using it wrong, something it wasn’t designed for, at least not for people like me who are creatures of many words. So I call this experiment a success! More useful knowledge to bring with me into the new year. I was never a Twitter addict, but when I return to it next year, I will not be checking it as much, I will know my limits when I start to become irrationally emotionally invested, and I will be more mindful to use it in a way that adds to my life.

I thought I had been doing that, but when I started to delete people, I felt like I was doing something wrong. I felt guilty pruning through the lists of users to leave only the ones that inspired me to be greater–a thought that, when I type it, seems absurd! As Adam wrote,

“Ultimately, I still *like* a lot of those people and like much of what they have to say. I don’t believe that restricting the people I follow to only the ones I agree with 1000% of the time is healthy.”

But if I cannot find a way to keep balance with it, it has to go until I can do so. As I always say, if you’re not going to use social media for what you want out of it, why is it in your life?

I knew the Universe had something to show me when it brought that article to me right when I was contemplating my relationship with Twitter. As Oprah would say it, I have learned to listen to the whispers before the bricks start flying!


I remember how well that one month break ultimately worked for me the last time, and reading this old post solidified my decision to do it again. I laughed at how, even in my old entry, I mentioned Adam’s post appearing right as I was contemplating a break. This time, my own old post came to me! The Universe always sends us what we need, if we pay attention. With my newly-limited energy, I need to focus. I don’t have spare energy to do it all anymore. The situation has changed, and I must change with it.

If it’s not bringing you where you want to be, let it go. “Let go or be dragged.”

a rainbow at night

Creativity and the Fear of Being Forgotten

a piece I only previously attached to the bottom of one of my posts. quote by David Bate.

It was about seven months ago that I made a post begging the question, What all could you do if you just changed your expectations of how to do it? And I affirmed that I was bringing out my art supplies again, because I could still paint if I relaxed the restrictive expectations I put on myself of how it needed to be done.

And thus, over the course of two months, I made this watercolour painting.

Then last month, I had a major epiphany.

It started as a sort of existential crisis, seeing a different butterfly on Instagram which I immediately wanted to paint…until I thought about the actual process of doing so. Then I became very drained, and I couldn’t tell if I just didn’t like painting anymore, or maybe I was just really overwhelmed by all the work it would take. Those seemed the most probable reasons.

And yet the entire week prior, I’d been schooled by the Universe from every corner on the differences between who we once were and who we become. How we progress into completely different people, if we’re doing it right. Even the “us” of several years ago, we appear the same, but–to pull from an episode of How I Met Your Mother–it’s as if we are our own doppelgänger, after having changed so much.

I mulled over my mysterious lack of artistic enthusiasm all day, a bit thrown off at the idea that someone with so much talent might not want to “art” anymore. Do people really just stop being artists? How was it that I identified such a need to paint, yet all I felt was frustration? How was that even possible?

Then something happened that knocked me off my metaphorical feet.

There was a PBS special airing the ballet documentary Dancing at Jacob’s Pillow: Never Stand Still, and at the moment I caught it, they said something really profound about one of the men in the business.

Ted Shawn, toward the end of his life, wrote,

“It is a paradox that I, who have a strong desire for what will endure, and will be permanent, should have chosen the art form which leaves nothing but memories. And yet I am satisfied this is my medium, and my destiny.”

It was exactly what I needed to hear to tie together all my pondering of the past several days. The Universe had been preparing me to let go of who I was trying to force myself to be just because it’s who I’d always been, and embrace all that I was now. And in the moment I turned on the television, I was receiving a wake-up call.

Hearing that segment helped me recognize I wasn’t so much being an artist as I was clinging to the idea of being an artist, to escape a common human emotion.

I realized that I wanted to paint and produce art, not out of a genuine desire and love of the process, but out of fear of not leaving something behind more than memories.

That was a difficult pill to swallow, but finally everything made sense. I was frustrated because the act of painting, in that moment, was no longer about expressing joy, but controlling anxiety.

And maybe I’m not as much of an artist as I used to be, but I am multifaceted, as are we all. Since relieving myself of that burden and seeing things as they are instead of how I want them to be–or otherwise through the lens of fear–I also realized that over the years I’ve slowly made the transition from Artist to Writer. And I say transition because in the past I’ve always been an artist first and a writer second, but now, my creative spirit flows much more effortlessly through the medium of words. I also enjoy being an amateur photographer; the key word being enjoy.

I have the desire to create, and I still very much enjoy painting, and photography, and writing. And this time, I know better than to jump from one label to the next with the implications that it will save me from the fear of being forgotten.

a piece I did a few days ago, out of the blue, for fun, with random inspiration
a piece I did a few days ago, out of the blue, for fun, with random inspiration

a rainbow at night