Treatment Recap: Month 2

Well, I had my 3rd appointment with my LLND today, which means I’m getting ready to start my 3rd month of treatment. It feels like I’ve been at this so long already, it’s hard to believe it’s only been  ~8 weeks.

The good news is, I am seeing some improvement already. I don’t get bloody noses anymore (used to get them daily). I can bend over at the waist and get back up without holding onto anything! I’m not experiencing brain fog or confusion nearly as often. And when the doc asked me today to spell “holiday” backwards, I rattled it off with relative ease. (Last month “music” backwards stumped me something awful, so this was thrilling.)  There’s a ton left to check off the list, but since I didn’t expect to see any results this early, I’m really pleased to have this much to show for it.

Month two was an interesting one! I ended up quitting minocycline because I was having horribly blurry vision. After 7 weeks on the drug at low doses (only 50mg 2x a day), I could see clearly only about a foot or two in front of me. I couldn’t read street signs, didn’t feel comfortable driving, and had even given up riding my bike. Reading presentations in the conference room was becoming impossible. Not good. And it didn’t seem like a herx to me, because my other herx symptoms had come and gone while that only got worse. Maybe it was intracranial hypertension, maybe it was just a side effect. Who knows, either way I’m glad to be done with it. My eyes started to improve after about a week off of mino.  I felt a LOT of relief.

I switched mino for doxycycline which gave me a herx from hell. TERRIBLE head pressure. I had such pain at the bridge of my nose, my jaw joints, my temples and the base of my skull. At the start of doxy, I had to spend several days lying down not moving. And, ironically, this also came with blurry vision! For a moment, I thought I’d have to quit this drug too. But I ended up backing off my dose, changing from 100mg 2x per day to 100mg 2x per day only every other day. This head pressure and poor vision did indeed turn out to be a herx, and it did fade after the first week on doxy at the lower dose. Phew. Eyes are still a bit blurry, but way way better than they were before.

Month two also brought on the treatment of Bartonella for the first time. With Rifampin and berberine, I’ve been  herxing off and on all month. I suspect that most of my symptoms are actually down to Bartonella more than Lyme, so this isn’t terribly surprising. For me, Bart herxes have included:

  • Exaggerated emotions
  • Fight/flight response (especially middle of the night)
  • Anxiety and fear
  • A little depression
  • Numbness  or burning sensations in my hands / feet / face <– most persistent

I even had one day where my right foot just felt wet… like it was in a puddle. I kept touching it to see if I’d spilled something but it was bone dry. Coinfections are so weird man.

In month three I also saw a Lyme literate optometrist here in Seattle! He was amaaaaaaaaazing. After so many weeks with drastic vision trouble on minocycline, some continued (but far less scary) vision trouble on doxycycline, and my concerns about intracranial hypertension, I was pretty freaked out by the time I landed on his doorstep. I was worrying about whether treatment had done permanent damage to my optic nerves, whether I was going to have to quit treatment, and if I did, whether I’d ever be able to get well at all. Ugh. I was definitely wound up. But he knew Lyme, he recognized all my meds, he knew exactly what risks they posed to my vision health and was able to test for each one of them.

Thankfully, he confirmed that the treatment to date has caused NO permanent damage to my optic nerves. What a relief! He did agree that it’s possible I was having some intracranial hypertension, but it hadn’t so far caused papilledema, which is a swelling of the optic nerves (and the only potentially permanently damaging outcome of IH). Phew! He found one major contributor to my blurry eyes, and it’s a simple one. I’m a teeny tiny bit cross eyed. I never was before, but apparently when you get so bogged down with infection, and fatigued, the muscles around your eyes get worn out and struggle to hold alignment. When they go just a bit off kilter, your vision blurs. This explains why my vision is better in the morning and worse at night! What a relief. This will easily get better as my infection gets under better control and my energy levels rebuild. Overall, after my visit with this doc, I felt incredible relief and waaaaaaay more confidence in continuing my treatment.

Thankfully, month three looks like much of the same. I’ll continue to treat Bartonella just as I was. I’ll be ramping up my Lyme antibiotics more. I’ve got to work up to Doxycycline at 150mg 2x per day, but I’ll do it slowly. First I’ll work up to taking my current dose (100mg 2x) daily instead of every other day. Once I handle that, I’ll try to get up 150mg 2x. Slow and steady! With any luck, I’ll see some solid improvement here at the end of the first quarter.

Onward!

Challenges Treating Lyme: Intracranial Hypertension

Lyme disease is hard.

Really hard.

When I was just newly diagnosed and talking to people about treatment, they’d all say things like “You’ll find what works for you,” or “You’ll try everything and a third of it will work.” I didn’t really understand this. Why don’t you just take the medications to kill the bugs, and take some others to build up your immune system, eat clean to prevent their replication and wait to get better? Simple enough.

It’s not.

I’ve decided that fighting a Lyme infection is a lot like playing pinball. Only, you’re the ball. You fly REALLY hard and fast in one direction, then get knocked down. Go in another direction, get knocked down. Yet another, smacked down. And you just keep going. You never really find a path, so much as many different paths, and hopefully you eventually reach your goal.

I hit my first major wall in treatment. A wall I now can define: Intracranial Hypertension.

You see, I’ve failed on two antibiotics. I’ve succeeded on 3 others, so I’m try not to beat myself up too much. But the big guns, the important ones, I can’t seem to tolerate.

I was on minocycline for about 7 weeks before I cried mercy. After my 3rd dose, and every day after, Minocycline created terrible pressure in my head, and terrifyingly, behind my eyes. It felt like someone was blowing up a balloon from inside my head, and that balloon was plugging my ears, pushing on my eyeballs and putting pressure on my jaws. It was a really awful feeling, and I knew right away instinctually that it was dangerous. My doctor told me this was just a herx reaction and to keep at it. But when my vision finally became so bad that I couldn’t see clearly more than a foot or two in front of me, I quit.

In response to my exasperated pleas, she switched me to doxycycline. I waited a few days between quitting the old med and beginning the new, needing the break. My vision cleared up a lot and the pressure eased, thank goodness. But upon taking Doxycycline, the exact same thing happened. This time the vision wasn’t as bad, but the pressure much much worse. I only made it 3 days before I quit that one. My doctor still hasn’t returned my call.

Trying to figure out what was wrong, I started reading up on side effects of tetracycline (the family of drugs mino and doxy both fall into). There it was: Intracranial Hypertension. I searched the internet. And I related, hard. Only, strangely enough, I related not only with the symptoms I’m having now, but also a LOT based on symptoms I had long before I started any of these drugs. Intracranial Hypertension can manifest as things like:

  • Plugged ears (!)
  • Vestibular challenges (!!!)
  • Dizziness / vertigo / balance trouble
  • Jaw pain and TMJD (!!!)
  • Pain at the base of the skull (!)
  • Trouble laying on your stomach (ears plug up, pressure builds)
  • Wooshing head when you bend over
  • Black out eyes when you stand up
  • Optic neuritis
  • Pressured, swollen sinuses

Holy macaroni! I’ve had ALL of these! I remember first reporting some of these to my neurologist 10 years ago. He said it was just MS, although that never made sense to me because it was clearly a structural issue rather than a neurological one – I could make this happen depending on my position or activity. I also can’t help but wonder if IH (as it’s called) may also have played a role in the sudden hearing loss and vestibular damage I experienced last fall. Or the plugged ears I had for months that followed. After all you look up intracranial hypertension and what’s listed right there as a cause? LYME DISEASE. Grrr. The way I figure, I’ve probably had borderline high IH for years, mostly tolerable, sometimes not, and taking these meds just pushes it way above the usual line. In a way, this is good. Maybe I never would’ve figured out and named this dangerous condition without being pushed that far. At least, I’m trying to see the silver lining.

In any case, this is a challenge. It’s going to mean certain Lyme medications – those that are known to increase intracranial hypertension – will be either off limits or really challenging for me until this gets better under control. From what I hear, a good IH doctor is harder to find than a good Lyme doctor. And most IH doctors don’t believe in Lyme, and most Lyme doctors aren’t familiar with IH. SIGH. My first stop is going to be a Lyme-literate eye doctor here in Seattle. He can check out my optic nerves and measure the pressure and hopefully a) confirm that this is what’s going on, b) help monitor and preserve the state of my fragile and very damaged eyes, and c) maybe help solve the problem? We’ll see.

I am the pinball. I hit my first wall. And at least I can see where I’m headed next.

But Lyme disease is hard.

Lyme Carditis: All Clear!

I reported in an earlier post that I was having my heart symptoms checked out by a local Lyme-literate cardiologist. Good news: I’m all clear of any actual heart damage!

echocardigram

It’s kind of crazy to consider, really. Heart pain, heart palpitations, extra and skipped beats, black out eyes whenever I stand up… and it’s all my heart’s reaction to Lyme disease rather than damage from Lyme disease directly. My poor body is under such stress with these bugs. But I am so heartened (har!) to know that my actual ticker is not yet injured by the bugs.

For anyone suffering in the Pacific Northwest who wants a close look at their heart, I highly recommend Dr. Peter Casterella. The head cardiologist at Swedish, he is Lyme-literate but not a Lyme doctor (which is why I can share his name – he lives with no fear of persecution). He’s well educated about the impacts Lyme can have on the heart and, as a standard medical doctor, can take insurance for all your heart-checking needs.

Now, time to enjoy this healthy ticker of mine without worry. Onward!

Treatment Shake Up: Starting Doxy Early

One of the most potent drugs used to fight Lyme is an antibiotic called doxycycline. I’ve known from the moment that I chose antibiotic therapy that I’d eventually be put on “Doxy”. Only, I’d hoped it would be in the cool, dark fall.

You see, Doxy has a unique side effect in that it causes intense sun sensitivity. Any skin exposure to direct sunlight can result in painful, long-lasting chemical burns. And for my oh so pale self, the risk is even higher.

For this very reason, my doctor started me on Doxy’s sister medicine, Minocycline, instead. After all, avoiding bright sunlight in Seattle’s rare warm weather is not only difficult, it’s sacrilegious.

But I’ve had some struggles on Minocycline. Most notably, I’ve experienced terrible pressure on my optic nerves that’s resulting in aching eyes and extremely poor vision. I can’t see clearly in front of me more than a few feet! And because Minocycline is known to cause dangerous levels of intracranial hypertension (which can lead to permanent vision loss), it’s time to get off of it and see if my eyes can recover.

I’m really heartened by this change. My poor eyes have been so damaged by Lyme over the years, the thought of doing even more damage to my eyesight with treatment has been terrifying to me. I am very excited to see how much, if any, visual acuity I regain.

What I am NOT excited about? Dressing like a beekeeper for the rest of our sunny days. Long sleeves, long pants, full coverage sneakers and big hats all seem to be in my future. How do Doxy patients not get heatstroke?! But this lady seems to be enjoying herself:

2013_homepage_c11-1

Maybe it’ll all be alright. Wish me luck in the coming days as we wait to see how my sight recovers. And hey, feel free to offer me a cold ice water when you see me sweating bullets in my hoodie and jeans on a 90 degree day!

More Symptomatic Days

success graphIt seems that every time I post something positive about my recovery on broad social media, I am immediately hit with hard days. Is this some kind of karmic balance here or what?

After a week on treatment for it, my Bartonella co-infection is really flaring (or herxing, probably). Yesterday, it felt like my right foot was in water all day. I kept touching my toes to see if I’d spilled something or if I was wet with sweat, but they were bone dry. Today it’s the opposite, my feet, hands and face all feel like they’re on fire. My skin is hot and almost has a tingling sensation. My feet have it the worst, and it feels like if I took off my shoes I’d see swollen, red, inflamed appendages. But they’re not, they look totally normal and are body temp to the touch. What a strange infection Bartonella is. It’s also nearly 2pm and I haven’t eaten yet today; for anyone who knows me as my usual oft-hangry girl, this is bizarre indeed. But appetite suppression is a known symptom of Bart.

I also am really struggling with energy and mental stamina today. I’m not sure whether this is Lyme itself, or perhaps the result of some medication trouble I had earlier this week. My Lyme doc had found my pregnenolone levels were low, so I started supplementation. Pregnenolone is a pre-hormone steroid that your body converts into all necessary hormones including DHEA, testosterone and estrogen. Those have all been low in me for years, so this was a fascinating idea to me. We started at a low daily dose of 10mg and at first it felt great. I had more energy and mental clarity. But before long, I also had a period I wasn’t due for (sorry – TMI), I was hyperactive, overstimulated and euphoric in an unsettling way, I couldn’t sleep at all and I had terrible aching heart pain. On day 7, with my doctor’s permission, I quit the supplements. I’ll keep my menopausal hormone levels for now, thank you very much, and hope they rebound on their own naturally as I recover from Lyme.

And, as there’s been no change, I am continuing to have major difficulty with my eyesight. I can’t read text at all out of my left eye and my right eye is also very blurry. On good days I can make out street signs from a distance of about 15 feet, but they’re blurry. On bad days, I can’t read them at all. This has been the case since I started Minocycline 5 1/2 weeks ago, and has not yet shown any signs of improvement.

In any case, it’s one step forward two steps back with this disease. I can still bend over without using my hands to get back up!! I know I’m making progress! It’s just not a linear recovery, and it’s important for me to remember that. And, of course, to keep the Netflix queue full, and the couch comfortable. Much rest lies ahead.

 

Progress Report: End of Week 5

Here we are, 5 weeks into treating Lyme (following Horowitz protocol) and one week into treating Bartonella. These videos speak pretty well for themselves! Take a look.

Before treatment:

Now:

And on Sunday, after a weekend of camping, I had enough energy still to vacuum my whole home for the first time in 2 months!! (Holy moly the dog hair that had accumulated…) I am still struggling in a lot of ways, but these are amazing signs of progress for me. I can’t wait to see what will change next!

Lyme Carditis

One of the common manifestions of late stage Lyme disease is symptoms of the heart. For me, this includes:

  • Skipped beats or fluttery sensation
  • Light headedness
  • Heart palpitations 
  • Aching heart pain

At times, this would last only a few minutes. But more commonly, it lasts for hours and days. Often it comes on at night, waking me from a dead sleep. It can occur by itself, or with a full on fight flight attack which includes a full body adrenaline rush and sometimes a sense of dread of fear. 

Even if you take away the fear that Lyme itself causes you to feel for no reason, and this is a scary experience. The pain was particularly troubling to me. Lyme can infect any part of your body, and infections of the heart are one of the few ways the disease turns fatal, a fact my doctor warned me about very sternly. 

It was reassuring to me that my Lyme doctor (who operates mostly outside of an established medical system for fear of political persecution), sent me to the head of cardiology at Swedish medical center here in Seattle. It doesn’t get more legit in the Lyme treatment business than a real hospital! The man is Lyme literate! It felt really good to talk about Lyme inside hospital walls, for him to nod along as I reported each of my symptoms and for him to sing my Lyme doctor’s praises. 

He explained to me that the heart responds to Lyme in two ways: 1) it can be infected and damaged itself, or 2) it can respond to your body’s state of overall infection with signs of distress even if it’s not infected itself. Reassuringly, he said the latter is FAR more common and that in 95% of patients with symptoms like mine, there is no primary damage to the heart. 

Since your life is sort of at stake, he does test everyone pretty completely. I got a quick order issue for an echocardiogram and got strapped with this heart rate monitor for a 2 day weekend. My symptoms are sporadic so the hope is we’ll catch some of them in a recordable way. 

  
The weekend of my test happened to be the one weekend I was throwing one of my best friends bachelorette party. We went camping, which was great because I wasn’t allowed to shower with the halter on anyway and this way, I did lots of activity that might induce my symptoms. I did a (tiny, flat, 1 mile hike), I dug for ground crystals, I walked around exploring our Snoqualmie river bed… I even tried hula hooping! Lots of things this pooped out Lymie doesn’t get a lot of these days. 

I turn the heart monitor in next week and my doctor will look over the readings alongside the echocardiogram results. I’m confident I’ll be in the safer of the two categories, but the reassurance will be good to have. 

In the meantime, I’m wrapping up an amazing weekend with girlfriends, and in a few hours I get to peel all this sticky sweaty adhesive off my chest and ribs. Can’t wait!!