Treatment Recap: Month 5 – Something is STILL working

I’m counting my lucky stars, big time. My good health that began in month 4 has continued through month 5! I can hardly believe it. Although, it makes sense. My doctor and I didn’t change much in my protocol this month, only increased the dosage of the last antibiotic I was able to increase (I’m now double strength on Bactrim).

Overall, I feel really great. I mean, for a healthy regular non-Lyme human being I probably feel “pretty good”, but for someone treating late-stage Lyme, I feel like a relative Olympic qualifier!

I mean really: I sleep pretty peacefully for 6 or 7 hours in a row usually. And with the exception of the full moon, I was without any nightmares or night terrors this month. I am able to work 10, 11, even 12 hours days without any increase in my symptoms! (Now, take this with a grain of salt. I’m a weirdo – I’ve been measuring my moods on my new Spire and I only ever experience “calm” and “focus” in the office, never “tension”; so I think my ability to tolerate work is really down to the fact that this is a really emotionally enjoyable experience for me, I’m not white knuckling through anything here.) And my very favorite gain of all has been that I am now able to walk much further distances with relative ease. Every morning I walk about 1.5 miles to work, and every night I make the same trek  home – up steep steep city hills. In fact, I’m averaging 9-10k steps a day measured on my Spire! And I still have energy after work and my foot commute to stroll around with each of my dogs and make a simple dinner. WOW!! I think I may even be doing more than some healthy people are these days.

I wasn’t without reminders that I’m still sick though, that’s for sure. The first was my 10-day break from doxycycline. I experienced an increase of some symptoms while off meds, and I herxed a bit for sure getting back on. That lets me know there’s plenty of bugs still being killed. The second reminder was when I tried to reduce my dependence on a muscle relaxer I’ve been taking since before my Lyme diagnosis. I dropped the Bacofen from 10mg 2x a day to just 1x a day and in crept my jaw pain, neck stiffness and muscle knots in my back. Bummer! The pain from those muscle contractions was just really super distracting and misery inducing, so I went back up to my previous dose and the symptoms are well managed again. The third reminder was during our our recent full moon,  I had some increase in brain fog / word confusion symptoms as well as nightmares and fight/flight for about 18 hours – such a strange connection there. And lastly, I struggled with my health as I went through a period of kind of extreme stress. The following was ALL crammed into a single week: 1) a trip home from Mexico that was more challenging than expected (think border delays, missed flights and flight hopping home on standby)  2) my disaster of a birthday complete with emotional breakdown, 3) a couple days herxing while I got back on meds post vacation, 4) a full week’s work crammed into two 12-hour work days and 5) helping my boyfriend through his rather invasive and difficult hip surgery. Makes me tired just reading that list. I definitely saw an increase in my symptoms – particularly in pain symptoms – as I flirted with my absolute stress load breaking point. BUT each of these reminders were fairly transient states that moved along quickly, and as a whole they felt like very minor exceptions to a month that was filled almost exclusively with feeling just like my self.

I really think the only thing I’m missing from my old life at this point is the ability to exercise vigorously like I used to. I still miss weight lifting. So far my doctors have made me promise I wouldn’t even try to exercise yet, and I’ve kept my word. But I am walking just a ton, and I am hoping to try a “gentle yoga” class in December and see how that goes. This is already miles and miles and miles better than I was just a few months ago.

For completeness sake, let’s do the list I type up for every treatment recap post! I feel like it’s getting real small now.

Things I struggle with lately include:

  • Poor vision – but most days I’m about 80% with my glasses on and have felt comfortable driving at night even (I’m using a Taurine supplement, 1000mg 2x a day)
  • Ringing ears – nothing has dented this yet
  • I still feel a little too hyper mentally most of the time; I wake up early and with a racing mind. It can be hard to get back to sleep.
  • I still have a very low body temp and cold hands (noticing it more now that winter weather is here)
  • NEW: I notice my lymph nodes are swollen and sore… collecting dead bug bodies?

Things I noticed less of this month:

  • Stiff neck
  • Numbness in my hands
  • Nightmares and night terrors
  • Foot pain (Bactrim is killing that Bartonella!)
  • Joint pain
  • Dizziness / feeling “off” when out and about

Not much changed in my treatment protocol this month, just more of the same. For those looking to compare notes, here’s a list of the things I believe are most therapeutic for me:

  • I am treating Lyme and Bartonella directly with antibiotics and supplements (current abx = Bactrim, cefdinir, doxy)
  • I also completed LymeStop 9 weeks ago
  • I have balanced my thyroid hormones using T3 only
  • I am eating a Paleo-ish diet, high alkaline, low glycemic
  • I *never* ever eat dairy, eggs, gluten or sugar
  • I drink ~32oz of fresh organic green vegetable juice a day
  • I drink probably 1/2 cup of apple cider vinegar every day mixed in water and my veggie juice
  • I take detox baths ~4x per week and drink lemon water daily
  • I keep VERY well hydrated and supplement my electrolytes with Nuun tablets
  • I’m building up my emotional health in 3 ways:
    1. I’m using schema therapy to change my thought patterns around self sacrifice (people pleasing)
    2. I am working on expressing repressed and previously unrecognized emotions
    3. I’m learning to recognize and articulate my own personal boundaries
  • I meditate and deliberately cultivate gratitude and calm (Spire is a new part of this for me – fun tool!)

Even the aesthetic side of Lyme things are improving. I got some new jeans that fit my new, slimmer frame (that was a HUGE confidence boost). My hair is growing back and so far it doesn’t have any bald patches or broken thin bits. I’ve been breakout free and, thanks to investment in a Clarisonic Mia 2 cleanser brush, I’ve not struggled nearly as much with dryness or scaling on my face. Heck, it’s even pretty dark out here in our Seattle winters, so I don’t have to don any dorky sunshade hats or gloves!

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I just feel like I’ve gotten my groove back. I hope to continue to make some improvement as I treat Lyme & Co, but really, if I had to stay right here at this level for the rest of my life, I’d be very very pleased. You know… if it eventually could cost less than $2,000 a month to maintain…. 🙂

A 10 Day Doxy Break

I have been on doxycycline since mid-Summer, and have done really well on my current combination of meds. So when I started talking to my doctor about coming off of doxycycline for a trip to sunny sunny Mexico, I was really nervous about a backslide. I had to quit the drug 5 days before my trip, to eliminate the bulk of it from my body, and then stay off during the duration of my 5 day vacation.

I’ve had pretty bad sun reactions to doxycycline even here in the shady Northwest, and was tentative the first time I removed my jacket and let the strong southern rays hit my bare skin. To my surprise and delight, I had NO reaction at all being in the sun on day 6 without meds. It felt amazing to sit in an outdoor restaurant near Los Angeles airport without concern.

My health stayed far better than I expected, actually. Interestingly, I noticed the largest increase in symptoms in days 2-5 of being off doxycycline. It wasn’t too bad, though. I had increased jaw and facial pain, revival of my old trigger points and muscle knots in my upper back and traps, increased neck stiffness, tension headaches and my good old right sided eye twitch came back.

Of course, these days were pretty stressful – leaving a job like mine to go on vacation is always bananas. In my world, 50-hour work weeks are the minimum and no one covers your work while you’re on vacation. And you certainly don’t get LESS work because you’re going on vacation. In order to take time off, I have to do a TON of work before leaving and I’ll be absolutely buried in work coming back. The 3 days that I worked and wasn’t on doxy were 12+ hour days and felt like constant emergencies. And in recent months, on this totally amazing combo of meds, I’ve been able to do just fine in that environment without much in the way of additional symptoms. Take away doxy, concentrate the workweek into 3 days, and I think having a little increased pain is probably fair. I mean really, a physical reaction like this to that kind of work environment would be fair even for someone without Lyme. I know I’m really lucky being able to tolerate work like that at all, let alone off one of my meds. It’s a far cry from where I was this time last year, homebound and unable to tolerate even looking at a computer screen. I’m so grateful.

Once I got to Mexico, the stress was pretty much off. Days were slow moving, the sun was shining, I read 2 books and I got tons and tons of playtime with my friend’s 1-year-old. I mean, what could be more stress reducing that baby snuggles?! I felt very good while on vacation, pretty close to my recent (very very good) Lyme normal with only one noticeable exception: I did struggle with a LOT was pressured / plugged ears.

This is a persistent and challenging issue for me overall. I recovered from major vestibular damage this time last year. And although I’ve seen tons of improvement to my plugged ears in recent months, I think the combination of being off doxycycline, having recovered recently from a bad chest cold, flying from Seattle to LA and enduring the many many elevation changes of the drive from LA to Northern Mexico was just too much. My ears were plugging off and on throughout the whole trip. I broke out some of my old coping techniques including my favorite invention ever, the otovent, and while I didn’t enjoy the experience of plugged ears, I coped ok with it. I’m home again now and the ears have definitely settled back down. Thank goodness.

We all have those symptoms that we just REALLY struggle to tolerate, don’t we? For me, those are vision and plugged ears / hearing loss. It just stressed me out man!!

Actually, traveling with Lyme is definitely a little more stressful than I’d like overall. It hurts my ears and muscles to be on planes, I worry about what I’ll be able to eat, and I can’t keep up with my travel partners as well as I used to. But I’m glad I went and tested my comfort zone. I proved a little bit to myself that this is an okay thing to do. But it’s also nice to be home, back in my routine and back on my doxcycline. After all, the Seattle rain suites me just fine.

Here are a few of my favorite pictures from the trip:

 

 

Going full hippie

  
Something interesting is unfolding in front of me on the Lyme journey. When I was first diagnosed, I applied my usual mindset of “meet it, battle, conquer it, move on”. And I’m staring to think that a) isn’t going to work here, and b) isn’t actually a good way to go about most things really. 

I might be turning full hippie here, but facts and resources and my own intuition are revealing a different reality to me lately. One where harmony and balance are paramount. I’m starting to believe MOST people are chronically infected with one thing or another. And that it is manifesting negatively primarily only in those of us with physical, emotional and energy imbalance. 

I don’t think antibiotics and immune boosting is enough to get well and keep you well. I think that’s a majorly important pillar, especially in someone like me whose infectious load has become overwhelming. 

But, additionally, I’m starting to realize my emotional self, my energy, my perspective, my bodymind as a whole needs to come into peace so it can heal. And, importantly, that I learn to keep it in a place of homeostasis where I’m not weak to invasion whether it be infectious, emotional or otherwise. I’m starting to believe that THAT’s the true vulnerability to address, that lack of balance, and that my primary infection is really a symptom of that problem. 

I don’t know where this will take me, and frankly I’m surprised to even be writing words like this, but something is happening here. And I think it’s important I honor it. 

Some of the things that are on my list of potential pursuits in this area include:

  • Expression of repressed and previously unrecognized emotions
  • Schema therapy to help interrupt toxic thoughts and behavior patterns (for me this is self sacrifice, “people pleasing”)
  • Meditation practice
  • Yoga
  • Qigong energy healing

Meditation is not new to me, but I’d really like to deepen my practice and bring a more exploratory and healing aspect to it. Yoga and qigong would be totally new to me, so send tips if you’ve got them! Also, if there are other modalities, books or viewpoints that have helped enrich this part of your life or healing journey, I’d love to hear!

Why do I feel like ending this post with namaste?? Who am I?!

Stress & Disease: Honoring the Mind Body Connection

I was recently asked to do some freelance writing on the topic of living well with multiple sclerosis. You see, I was a copywriter and patient educator in my pre-Lyme life. I’ve been longing for an opportunity to re-engage in the creation of wellness resources and was happy when the opportunity presented itself (even though I have come to believe a bit differently about my MS diagnosis since I tested positive for Lyme). The truth is, whether I’m writing about Lyme or MS, the practical advice is the same. As I started thinking about my list of actionable tips, I realized how many of them have to do with emotional aspects of self-care.

Huh, that’s sure different than the writing I did 10, 8, even 5 years ago.

This has been one of the most surprising lessons that’s come out of my Lyme journey. You see, pre-Lyme diagnosis, I was still doing pretty well “powering through”. During periods of multiple sclerosis remission, I did it all. The typical type-A self-sacrificing perfectionist, I did crossfit 5x a week, I kept an immaculate home, I always dressed to the height of my sense of fashion, I worked 10 hour days at a high powered corporate job, I always said yes to friends and family, I placated frenemies, I panicked at the slightest sense of disharmony in my primary relationship, I rarely expressed dissent and even though I frequently felt overburdened, I never slowed down. I mean, I went to 5 separate Christmas celebrations in one day last year to make each of my disjointed family members happy.

I did all of that with a deep sense of duty and rightness. Until life forced me not to. In the fall of 2014, my illness struck with a vengeance even I couldn’t ignore. Homebound, dizzy, manic, and panic-stricken, life got really small really fast. Just managing the daily tasks of survival was tough for me, so pleasing anyone else was out of the question. At first, I viewed my cutbacks as a temporary necessity. I worked on my recovery with the aim to get back to all the busyness of my previous life.

Even though the proof was right in front of me, I remained resistant to the notion of a mind / body connection. When my cognitive behavioral therapist (who was helping me cope with Lyme-induced panic attacks) brought up somatic illness, I thought for sure he was saying this disease is all in my head. I came up with defensive ideas like “Well sure, we all have ‘past trauma’ according to therapists” and resisted the cliché notion of looking for maladaptive habits learned in childhood. Therapists always blame your childhood and your parents, don’t they? And I am my own woman, after all, aren’t I?

Well, thankfully his urgings opened my mind just enough that I was able to hear the truth when I came across this interview with Dr. Gabor Maté, author of “When the Body Says No“:

In this video and in his book, Dr. Maté quotes a study that followed 1700 women for 10 years. Researchers found that women who were unhappily married and didn’t express their emotions were 4x as likely to die as those women who were in equally bad marriages but were able to express themselves. In other words, the tendency to not express negative emotion was associated with a 400% increase in death. That stopped all my protesting on the subject straight away. Maybe there was something to this somatic illness idea after all.

Dr. Maté goes on to discuss another study which showed that women with breast cancer who were unskilled at expressing anger had diminished activity of a group of immune cells called natural killer cells. Now, that… that made it personal. You see, on my first visit, my Lyme doctor ran a CD57 test which measured one category of my natural killer cells. I measured at 29; normal healthy range should be in the 300 rage. I had a mere ten percent of the ideal amount of natural killer cells.

That did it for me. The work I am doing in areas of emotional responsibility, self care, expression of negative emotions and exploration of repressed feelings is no longer reluctant. Our emotional experience is not separate from our physical experience. Stress and emotional makeup play critical roles in our immune health, influencing our hormones, our neurotransmitters, our whole bodies and brains.

This period of slowing down has taught me some important lessons. Being forced to say no so much more often has shown me exactly how uncomfortable it makes me. Now that just 2 or 3 extracurricular events leads me to feel overbooked, I can see exactly how stressed out that makes me. And now that my physical wellbeing is so very fragile, I can see the direct physical impacts stress has on my health really easily. Life painted me a reality on this subject impossible to ignore.

I don’t know if I can change the physiological makeup of my body formed in childhood, but I sure as heck can take the reigns now and stop further damage from being done. And surely learning to honor my own needs a little more will halt the effects of acute stress on my health. In a way, I’m grateful. I guess I needed the bad habits of my life to get some big, obvious consequences or I might never have addressed them.

But let’s hope I can kick the disease and maintain the good habits soon, huh?