Treatment Recap: Month 1

Whew! Time flies. My first 4 weeks of treatment are complete. Overall, it was pretty much what I expected.

If you’ll remember, I had a HUGE herxheimer reaction on day 3 of treatment. It was exactly what I was most afraid would happen. But I did everything on my detox list just as my doctor had instructed me, and the worst of it did pass within 4-5 hours. I started treatment again on a lower dose of one of the 4 drugs, and things were much better. I still herxed. For about 2 weeks, my symptoms were worse. I felt groggy, and tired, sore and sort of out of it. But it definitely didn’t feel like an emergency or anything. I was able to work and keep up with really minimal social obligations, at least. There was a lot of Netflix and laying on the couch during this time. Toward the end of week 2, I started to feel a little bit better. Most days were my “Lyme normal”. I even had a couple of days where I definitely felt better than I had before treatment; better than my “Lyme normal”. These days were really encouraging. It’s enough to make me believe I am on the right path.

The only symptom of mine that got worse on treatment and that has stayed consistently worse is blurry eyes. It started when I went on minocycline, which is an Lyme-fighting antibiotic that crosses the blood brain barrier. My vision is so blurry now that I can’t read street signs (even the big freeway ones). I even had one day where I couldn’t crisply make out my own features in the mirror, or read text on my mobile phone. This is super troubling to me, but it makes sense. Lyme has done a real number on my eyes over time. I had very blurry vision before I was even diagnosed and treated; I was changing between 3 prescription lenses throughout the day and had had optic neuritis 3 times over the years (twice in my left eye, once in my right). It’s obvious to me that my eyes have been one of my most intense and consistent locations of infection. So when I added in minocycline and it traveled into my brain and started killing bugs that are living in my optic nerves, those bugs released toxins. My optic nerves are super inflamed from the combination of active infection and die off toxicity. They will probably stay that way a while. My doctor assures me that my vision will come back, I just have to be patient.

I begin month 2 of treatment tonight, so I expect the next week or two to be rough again. It’s funny, I’m almost as scared of herxing as I was when I first started treatment. Maybe this never gets easy! I was diagnosed with one Lyme co-infection, called Bartonella, so in addition to my Lyme-fighting drugs, I’m adding in Bartonella treatment this time as well. I’m as excited as I am nervous. I think (and my Lyme doctor agrees) that most of my current symptoms actually stem more from Bartonella than they do from Lyme. So this feels like a big important step in my treatment.

bartonella

Only the brave prosper in this fight, so I’m taking the next step as boldly as this sick girl can manage! Let’s kill some bugs, folks.

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Lyme? MS? Or Both?

Most people who know me know that I’ve had multiple sclerosis for just over a decade. I worked in patient advocacy and started my career as a writer doing exactly this, writing educational material to help others with chronic illness. I was just 21 at the time I was diagnosed, and have had a very typical experience with the disease. I’ve had a relapsing remitting course, meaning I have “episodes” of neurological disability that usually resolve pretty well (I recover ~90% most of the time). Typical symptoms include:

  • Nerve pain
  • Muscle weakness
  • Numbness
  • Tingling
  • Unusual sensations (I had “rubber band” feelings on my arms)
  • Optic Neuritis (reduced vision and eye pain)
  • Slurred speech
  • Fatigue
  • Diminished cognitive ability (I had trouble word-finding, and sometimes comprehending)
  • Tremors
  • Loss of coordination
  • Balance trouble
  • Muscle spasticity
  • Urinary frequency

To be recognized as a “relapse”, the symptoms would have to last more than 24 hours. For me, they’d usually come on over a day or two. I’d call the doctor, I’d go in for an MRI (we’d always find new white matter lesions), we’d start IV solumedrol and within a few weeks or months, I’d be back to a pretty good baseline.

These episodes were frequent at first, happening every 3-6 months. Around the 5 year mark, they became less frequent, happening once every few years at most. I’ve been in remission a long time now. This is somewhat strange, as MS usually gets worse over time. But I attributed my improvement to a change in diet and lifestyle I undertook in 2010. I started crossfit, I eliminated dairy and eggs from my diet (first being vegan, then adopting a “paleo”-esque diet) and was overall a much healthier person. I called this a wonderful byproduct of the change.

In the months that I have started to suspect I have late stage Lyme disease, I’m frequently asked “does that mean you don’t have multiple sclerosis?” I’ll admit, I’m curious to see what my Lyme literate physician will make of this. But for now, my thought is this: I do think that I have MS, at least technically. But this might explain why. Multiple sclerosis, you see, isn’t really a description of an underlying disease state. It describes WHAT is happening, but not why it happens.

Multiple Sclerosis is the name for a condition in which your own immune system destroys the myelin sheath that coats the nerves in your central nervous system. This is DEFIITELY happening to me. Without the sheaths, the nerves don’t perform as well and I have symptoms associated with the damage until it repairs.

multiple-sclerosis-mylein

In the most widely-accepted view of multiple sclerosis, this happens as a result of a malfunctioning immune system. And until now, I believed that was what happened to me – a simple glitch that made my system haywire. But I no longer believe that my MS is a result of malfunction.

I believe the Lyme disease (spirochetes and cysts) are at least occasionally inhabiting the myelin sheaths around the nerves of my brain. It’s well known that those little bugs LOVE fatty tissues. And my immune system, upon spotting them there, mounts an attack that damages the myelin.

So is it multiple sclerosis I have? Up to interpretation I guess. In the sense that I’m having de-myelinating events, yes. In the sense that it’s all an autoimmune malfunction, no. But the outcome is certainly the same. Here’s a video by a Lyme-literate doctor in Seattle who has similar speculation on the topic.

The National Multiple Sclerosis Society, strangely, denies any link between the two conditions. Sigh. It’s such a strange and political world I’ve found myself thrust into.

The big question for me at this point is, “What does that mean?” Well, hopefully it means that if I can eradicate the bacteria, I will cease to have attacks on my central nervous system and all of this will go away. Even if eradication isn’t possible after such a longstanding infection, I believe getting it better under control can only help.

I do certainly think I’d have been better served if I’d received a Lyme disease diagnosis 10 years ago instead of MS. I was tested for Lyme that day, having presented in the ER with classic symptoms of neurological Lyme including confusion, slurred speech, right sided bells palsy, right sided weakness and balance trouble. When my doctor walked in and said “well you don’t have Lyme,” I didn’t know to ask more questions. I just accepted it and moved forward. 10 years later, I’ve learned that the CDC-recommended tests are inadequate. Most people who have their spinal fluid tested by those standards show up negative.  In the end, I believe I got the “MS” label simply because it’s more accepted, more traditional. It was the condition the doctors were more familiar with. (The CDC doesn’t yet recognize late stage Lyme and thus, most doctors aren’t familiar.) As a result of the missed opportunity 10 years ago, I’ve let those bugs replicate in my system every 28 days for this whole decade while I suppressed my immune system with MS drugs. Sigh. But the important thing is, I know now. And I can finally address the right issue here.

Unfortunately there are more questions than answers on the subject. And it will probably remain that way a great while. But I have more answers here than I did before my Lyme diagnosis, and a new and powerful lever to pull for treatment.

First Signs of Improvement

LIFT

I seem to have turned a corner and (for now) Lyme treatment seems to be making me feel better instead of worse. I had one really bad day last week, but otherwise have felt more energetic, less sore and very mentally clear more days than usual. I even have rare days that I can see well enough to read street signs. It makes me so hopeful!!

I see my doc Friday which will probably mean med change and getting worse again. This is just part of getting well. But for now I’m enjoying the little bit of reprieve.

Although I’m nowhere near physically able to do it (I still can’t even get up from bending over unassisted), working out keeps popping into my mind. I can’t WAIT for the day I get to step back under a barbell. I will probably blubber like a total idiot; I tear up at the mere thought. But right now, for the first time in a very long time, I believe that day will come.

Lyme Symptoms: Checking Off The List

  
I’ve been super excited to see which of my Lyme symptoms would be first to fade on treatment, and just over 2 weeks in I think we have a winner. 

Every single morning for well over a year, I’ve woken up with a bloody nose. Gushing red blood every morning. I’ve been reporting this to doctors all along but no one ever seemed concerned (seriously what the heck?).  It’s become normal to me, so when the blood gates dried up, I noticed!! I’ve been reaching for that morning Kleenex for a week now and no blood at all. 

It’s double interesting because one of my most consistent herxing symptoms has been that within an hour of popping my Lyme meds, my right sinus passage goes all cold and tingly. Every time. This is the same side that always bleeds, the same side that I lost hearing on back in October, the same side that has all the swollen lymph nodes. Clearly Lyme bugs had set up shop in my sinus andeustachian tubes and they’re getting booted. Shit is HAPPENING ya’ll. 

Only 65 or 70 symptoms yet to go. Hehe. 

Ramping onto Treatment: Phase 2

  
Well, after the scary Herx experience I had last week, the doc and I dialed back my dosage of my most potent medication. And while I am definitely still herxing, it’s far more mangable now. I have eyes that are blurrier, muscles that are more sore than usual and more fatigue than usual, but I’m managing to work and stay active, so it’s time to add more. 

In fact, I’m adding 3 new medications tonight! That’ll take the grand total up to 4 Lyme-fighting meds. The rest are supportive care and symptom management meds, mostly probiotics and mega dose vitamins. 

2 of the Lyme fighters I’m using are aimed at Lyme in its spirochete form, 2 are aimed at Lyme in its cyst form. You see, Lyme bacteria are tricky buggers who change shape all the time so you have to mix up different cocktails that change over time to get em. 

I am expecting some more herxing as more bacteria die off should start happening with these additions. Wish me luck. If I can tolerate this load of meds, this will be my regimen for the rest of the month. Crossing all fingers. 

My first Herx

My decision to begin treatment was such an easy one. I will do anything to get well. Trouble is, part of getting well very often means getting worse.

A Jarisch Herxheimer reaction (or “herxing” for short) is a temporary worsening of symptoms that often comes with treatment. They usually happen when you start a new drug or combination of drugs, and can last hours, days or even weeks. Having a herx reaction is both a good thing, in that it proves the treatment is working, and also a bad thing, in that your condition temporarily worsens. If you’re like me, nearly at the end of your rope, worsening dramatically would be a major blow, so like most patients I was full of trepidation when I took my first dose of medicine.

I’d had my boyfriend come over for the occasion, we were settled in on the couch, and I popped the first bunch of pills under his watchful eye. Two hours later, when my right sinus passage turned cold and numb, my lips and chin started to feel tingly/burny and I lost feeling in my feet, I knew it was starting. That first night, this was all that happened and I was thrilled.

I woke up the next morning back at my “Lyme-normal” status quo and happy to have a non-eventful herx experience under my belt. When I took my second dose of medicine with breakfast (at work), I wondered if that’d happen again. It didn’t. Instead, just a few hours later, I had a lot of brain fog. I experienced confusion doing the more complex tasks of my job, difficulty multitasking and just feeling pretty out of it. Thanks to a lot of lemon water, a dose of Alka Seltzer Gold and some solid calm breathing skills, that passed in just a couple of hours and I once again felt confident about my herx-handling skills.

That night, I took my third dose of meds (by myself) with dinner and went heavy into my detox routine. I drank lemon water, ate my giant salad for dinner, I spent an hour in an Epsom salt / baking soda bath, and I used chlorella, quercitin and burbur supplements before bed. I felt totally Lyme-normal crawling under the covers, figuring I’d kicked it. Until I woke up at 11pm with a pounding heart, shallow breath, tingling all over my body and a sense of a major adrenaline rush. I hopped out of bed only to realize I was also dizzy and that my eyes / head / base of skull and jaw were all aching badly. My vision was blurred. This was NOT good! This is why, whenever I’d asked anyone what it’s like to have a herxheimer reaction they say “you feel like you’re dying.” YUP. Dying.

I started drinking burbur by the dropper full every 10 minutes like my doctor said to do. I sat in bed with warm lemon water, and I practiced deep breathing. And I did this for hours. It is pretty impressive how fast the burbur starts to work, with each dose I did feel calmer. By 4am I was at least mentally calm and free of tingles. I was nursing a higher than average level of anxiety and a swiftly pounding heart, but was otherwise ok. It no longer felt emergent. I called and left a voicemail for my doctor letting her know what had happened and asking if she had any advice.

I managed to secure a couple hours of sleep at that point, which I’m so grateful for, and the universe did me a solid when my early morning meeting was canceled. I let myself wake up slow and stay sort of disoriented. I realized I was also extremely emotional, one of my classic Lyme symptoms (and one of my most embarrassing ones). The herx was still on, but at least a little less intense. I left my morning dose of medication at home and headed to work.

Luckily, my doctor called first thing after she got my message and provided a very solid voice of reason. “This is working, this is part of healing,” she told me. I know she’s right. And mercifully, she suggested we scale back on the most potent medication, cutting the dose in half in hopes the Lyme die off will happen a little more slowly, and those herx reactions will become more manageable.

I’m taking the rest of the day off of the big guns, and we’ll try again tomorrow. With medium sized guns. A coworker shared this song, and I think it’s pretty perfect. There’s still a lot of fight left in me.