Patience

Nothing has ever tested my patience as much as this, now. Treating Lyme is not an overnight thing. I need to remind myself on a regular basis that I'm not wasting time by being unproductive, but rather, taking the time to recover.  

Ever since I started treatment, I've become progressively sicker each day. (A reminder: that's a good thing. It means it's working.) My sleep schedule is more screwed up than ever, my brain is more foggy than ever, and I'm experiencing trippy sensations like feeling as though my arms are detached from my body. My skin is itching, not like an allergy itch, but sudden stings, as though I'm being bitten by bugs.

I feel as though my brain is suffering far more than my body parts. I wake up at odd hours, check my voicemail, fall back asleep, and later can't remember if the voicemail was real. I drive to the store (it being questionable whether I should be behind the wheel) and I try to turn on my left turn signal, but instead I flash my brights. I try to reach for my exfoliator in the shower, and while I'm very actively telling myself to grab the orange bottle, I grab the blue bottle of body wash instead.

A lot of the above have to do with the fact that, almost three weeks into treatment, the minocycline has not only crossed the blood-brain barrier, but is actively killing Lyme spirochetes in my brain. This is making my brain more inflamed than it already was. But...... there's something else! A few days ago, I had a few major back adjustments performed by a chiropractor, all of which signal the central nervous system to balance itself out. Since my nervous system is so out of balance, trying to balance it out can cause a bunch of neurological symptoms, hence the last three days of feeling like I'm drunk and suffer from Alzheimer's wrapped into a burrito and tied with a bow ;-)

I recently remembered a funny, trippy story from my childhood. It must have been only a year or two after I got the now-infamous tick bites. It was late, past my bedtime, and I still wasn't asleep. Then I started seeing squiggly bugs crawling on my bed. I moved my eyes to the wall, and I saw them there too. Panicked, I moved my eyes elsewhere, but wherever I looked, long, squiggly bugs were crawling around. So I went and got my mother, and I started pointing them out to her. Only, she couldn't see them. She told me there were no bugs, but I very, very clearly saw them wiggling about, and I still remember how real they looked. But apparently I was the only one who could see the bugs. So my mom gave me some aspirin, and I finally fell asleep. This is exactly what they looked like:

Unlike a number of other "bug" shapes, they weren't round at the ends, or short, or curled, or flat, or circular, or flying... they looked exactly like the ones above, only they were black. Well, the photo above shows the borrelia burgdorferi spirochete. A.k.a. Lyme disease. I saw the Lyme disease that night. But I never saw it again. Could that have been the night the Lyme disseminated into my brain? Was my hallucination a rite of passage into the next stage of chronic Lyme?

Once I get through this treatment, I'll be able to go back to work, resume my social life, and be a healthy person, right? Not necessarily. The more I talk to people with chronic Lyme, the more I hear of their failed attempts to treat it, their many years of undergoing various and pricey treatments with little success, and their relapses even after they thought they were cured at one time. I talk directly with others who have Lyme, and I read literature about Lyme's ability to hide in tissues or myelin sheath, wherever the medication won't reach it, so that it can multiply again after you stop taking the medication. I realize just how hard it is to cure, and I wonder why I would be anymore lucky than the other folks who've been trying to treat it for years.

But I take my pills. And I let them make me crazy. And I rest. And I wash up. And I eat. And I rest. I take it one day at a time. And I try to be patient.

I try not to think that my savings is dwindling away every moment because I'm not bringing in any income. I try not to think that I finally, at 29, after years of career changes, had become a self-made career woman with in-demand skills, only to have to stop working.

Instead, I think about my dreams. My band putting on shows. Mad love. Starting a family. A house on five acres of land.

It's hard to wait, because I've always been proactive, taking the bull by the horns and making my dreams into reality rather than waiting for them to happen to me. Now it's time for me to surrender to the unknown. Everyone keeps telling me that whatever is meant to be will be.

Well, I've never been one for surrendering my fate, or for ascribing to the notion of predestination, that my life is laid out according to a plan by a higher power. In fact, in freshman year philosophy 101, I lashed out against that notion, proclaiming, "We have free will and we make our own destinies." But when you have the time to lay around, stewing in your sweaty sheets and doing a whole lot of nothing, you think about these things. I'm more willing to admit now than ever before that I haven't got a clue how anything works in the cosmos, and I don't have the power to control my life as much as I wish I did. So, I wait.

Update and Some Humor!

It's been an interesting first two weeks of treatment. Just like everyone said, I've been feeling sicker than before--a culmination of my worst symptoms dialed up a notch. The neuro stuff is dominant, in terms of my short-term memory, clarity of thought, anxiety, speech/articulation, and fatigue. It's like I went on a drinking binge and killed a bunch of brain cells. Still, it hasn't been as debilitating as I'd anticipated it might be... no need for in-home care. While I get weak when I shower, I can still stand; while I get dizzy cooking, I still eat. So, it could be worse.

One particular part of this experience for which I am so grateful is my new network of support. I've immersed myself into the online community of Lyme patients, particularly young, neuro-lyme people such as myself, who struggle to enjoy their youth in a world of healthy people. They've been wonderfully supportive and informative, sharing suggestions and helpful hints for everything. I've learned so much about Lyme disease, supplements, co-infections, alternative therapies, and metal accumulation, just by talking to them. My new friends, in addition to my long-time, non-Lyme friends, have been wonderfully supportive and thoughtful, and for that I'm so grateful :)

On that note, I wanted to share a few funny anecdotes from my life that are, no doubt, related to my chronic infections.

1. Many years ago, when I still dyed my hair as regularly and addictively as druggies get their "fix", I had a surprising reaction to the hairdye. No, I didn't burn my skin or start to itch--rather, I fainted during the process. A full head of bright, fire-engine red dye was infusing my scalp when I started feeling nauseous and dizzy. I remember thinking I had no legs, because I couldn't feel them, so I leaned against the wall, and then.... my boyfriend, who was in the other room, ran into the bathroom. "Leila! Leila! Leila!" I heard through my semi-conscious state. I opened my eyes to a view of the bathroom floor, and a bright red streak on the wall and ground. Unfortunately, the dye wouldn't come off the wall--leaving a public display of what appeared to be a gruesome murder scene. And sadly, I had to discontinue that hair color after that incident--no level of vanity is worth the chemical sensitivity and toxicity (even though I looked badass as a redhead, if I may say so myself!).
   
   
2. About six years ago, I worked as a page designer and copy editor at a medium-sized newspaper. For a couple months (for reasons I still don't know) I was having horrible chest pains. They would come on like a heart attack (and my left arm would hurt, too). The only thing that relieved the pain was having someone put a LOT of pressure on my chest bone (sternum?), more than I could do myself. So I periodically asked a coworker to put their flat palms between my breasts and put all their weight into it. One night, I discovered that laying on the floor and having this person stand over me with their hand or foot on my sternum was a great form of relief. So I laid down and had a (incidentally, male) coworker press right on the middle of my chest. Right then, my boss walked by. Now, that was a funny scene to stumble into!
   
   
3. I also get random shooting pains in my spleen from time to time. Doctors don't know what this is. I traced the pain to my spleen by Googling images of bodily organs and anatomy, Lol. "Yup, right there under my left rib cage is where the pain is." So, a few days a month at random times, I get this pain, and if I'm around anyone at the time, I'll say, "I'm sorry, my spleen hurts." No one ever knows how to react to that ;-p
   
   
4. For the last three years, I've randomly "seen the light!" while trying to fall asleep. Bursts of light quickly pop into my enclosed eyelids, as if someone had turned on the lamp for a half second and quickly shut it off. At first, I thought this was just my cell phone lighting up. Soon I discovered it was just a vision thing, not traceable to any real-world lights! Maybe God's calling me? Well, I recently found out a lot of people with Lyme disease have this. Who knew?

And that concludes funny anecdotal hour :)

Hello

Bad day. Herxing. Not sleeping well. Went to Target today. Barely could buy all the stuff I needed. Barely could drive home. Eyes are hurting right now. Need to sleep this off. Want to type a normal blog and will try to soon. But for now, must rest.

Day Ten of Treatment

This is going to be short and touch on just a few key points.

• I still don't feel well. I have very little appetite, feel worn out from all the meds and supplements I'm taking, and got very, very depressed this particular PMS period. I felt like I wanted to cry over everything, and wanted to throw daggers at people (like telemarketers that woke me up from a nap, and my neighbor for mowing his lawn). I know, my hormones hate me because of the herx and detox. Must get worse first to get better. *sigh*
  
  
• I've stopped the Diflucan. It was making me break out into a red rash (and acne!), a nasty bumpy combination all over my face, neck, chest, back, shoulders and arms. My dr. said it was OK to stop, since it was more for the candida and not treating the Lyme. While I can't be 100% certain it was the Diflucan causing the rash and acne, it's the only thing I'm taking that reports a very high incidence of both of these side effects and a host of other skin (dermis) effects as a direct result of expelling yeast and fungus from our bodies through our dermis. Now I'm choosing to go the natural route in treating the candida. Vitamins, antifungals and probiotics also treat this :)
  
  
• I've added a powdered nutrition supplement called Reliv, in addition to 5-HTP, to my protocol as of yesterday. We shall see how those additions go. The first time I took the Reliv, I felt very sick to my stomach for a couple days. Does anybody have any experience with this product?
  
  
• I'm trying to raise money for my healthcare bills by selling my music. My band has an EP out that is available at www.cdbaby.com/opalaxis. If you like Tori Amos, Sarah McLachlan, Keane and Coldplay, you would probably dig my tunes :) Heck, you can actually hear samples at that link above, to decide if you like it before you buy it!!
  
  The disc is mixed, mastered, and professionally printed and shrink-wrapped! Makes a great gift if you know someone who likes this style. All proceeds go toward helping me pay my (so far) couple of thousands of dollars in bills for Lyme treatment. Thank you very much for your support! Here is a photo of the CD cover :)
  
  
  
  

Day Six, Checking In

It's a Friday night after a long and grueling week of treatment. I'm incredibly grateful that I wrapped things up at my job and said my goodbyes before I started the meds, because there is no way whatsoever I could have worked (even one day!) this week.

I've done very little other than lay in my bed all week, and often when I lay in my bed trying to sleep, I can't. Every night this week, I became wildly, wide awake at 3 a.m. That definitely never happened before I started these meds. The insomnia, sweating, and head issues lead me to believe a lot of detoxification is occurring in my body. Things are going as they should, so I'm excited about that!

One thing that's dwelled on my mind all week is the need to clean the clutter and stress out of my life. I've read in multiple sources that stress and negativity will literally prevent the medications from curing Lyme disease, and that in order to actually heal from this disease, it's absolutely imperative that a person be relaxed. A stressful incident can physically trigger the borrelia spirochetes to strengthen their hold in my body, even if I've already weakened and killed many of them.

So I'm making a very conscientious effort to simplify, purify, and detoxify my life.

I won't go back to work until I am recovered, it's that simple. I won't try to socialize when I don't feel well. I will avoid involving myself in any and all drama that my friends may inadvertently throw at me by way of their challenging circumstances. I will continue to eat nutritious foods, stretch my legs outdoors, and do core-strengthening exercises on a daily basis. I won't try too hard to please others, but rather, will put myself first. I will give lots of love out--to my friends, my cats, my plants and flowers, and by the process of giving love, I will experience its euphoric and immune-boosting benefits. I will not let my brain fog, restlessness, or fatigue get me down. I will not forget to take my pills, or avoid them out of fear of side effects. I will look to a bright tomorrow.

I've been practicing all of the above for the past week, and need to remember to practice all of it for the remainder of my life. There will always be tough times, but that's no excuse to stop. Ever.

The American culture, surely harmful to just about everyone, has been particularly harmful to me. It's a culture in which we over-extend ourselves, push ourselves to the limit, eat too much sugar, drink too much alcohol, and don't sleep enough. Our culture thrives on working long hours in stressful, unhealthy jobs to make lots of money we can then spend on a bunch of useless crap we don't need. We eat pizza and cheeseburgers, drink beer and soda, and glorify shallow, meaningless and trashy behavior.

Well, at 29, American culture has taken enough of a toll on me. I'm sick of it all! I gain nothing from drunken nights on the town, or sitting at a stressful desk job all freakin' day, or eating poisonous, toxic "food", or associating with shallow people who only care about their manicures and what's happening on Jersey Shore. Omg! Life shouldn't be about money, image, pop culture, popularity, or excess of any sort. Life should be about balance.

So I'm done pushing myself to do all the trivial and excessive things I've been conditioned by this toxic society to think I need to do. Call me anti-social, call me reclusive, call me anything you want, but I may do a little more healing (and a little less texting) from now on.

The last couple of years ('09-'11) have been particularly brutal, not just because my diseases were undiagnosed, but because I pushed myself way too hard. Employed full-time at a tiny company, I handled partnerships, program development and training, partner fee negotiating and invoicing, graphic design for our website, newsletters, brochure and collateral design, customer service, marketing, direct mail campaigning, and more.

Meanwhile, outside of work, I practiced weekly in a band that I started and developed from the ground up over the last six years; the band recorded and put out a CD in 2009, which we toured locally to promote; I regularly fostered kittens until they found homes, trapped and neutered feral cats in my neighborhood; I moved twice in the last two years, bought a house one of those times; traveled all over the country for work or pleasure; experienced some romances and some heartbreak; and tried way too hard to please everybody but myself.

In the midst of it all, I didn't sleep well, I didn't eat well, and I needed to increase my Cymbalta (anti-anxiety medication) dosage, in addition to increasing my coffee consumption. I didn't even notice my gradual decline, my gradual and steady deterioration. All I knew was that I was making more money than I'd ever made, and the Cymbalta and daily coffee and sugary treats kept me going!!

It all came to a head around these past holidays. I knew I was on the verge of a nervous breakdown. It's not to say I was clinically depressed, but by the same token, I wasn't happy either. The Lyme diagnosis (and all its co-infections), which came in early January, was a blessing of many sorts. It has allowed me to put a stop to the madness.

I encourage all of you, diseases or no diseases, to take a long, hard look at your lives and evaluate what's harming you. Then get rid of it.

Treatment is working!

Hi everyone, I started my Lyme treatment Sunday evening. I'm here to update you in spite of my inability to think or function on a basic level. I'll try to keep this short, because the brain fog is heavy, and I'm coming up short on cognition....

 For the first 24 hours after I started the "big daddy" (minocycline, the antibiotic and master of all my drugs), I felt no ill effects. Twenty-four lovely hours of resting, doing housework, writing emails, and landscaping my back yard, all in upbeat spirits!

 Then, last night, right after I took my probiotic and headed to bed, I started to feel edgy. I couldn't fall asleep, thoughts were racing, and it was like every bad scenario was playing in my head--I almost had a panic attack from the irritability and the swirling, negative thoughts. It had come on so suddenly after feeling stable and happy all day. My stomach felt funny too, but not quite nauseated.

 Since it happened right after I took my probiotic, I thought it was just a temporary side effect that would be gone by morning. When it didn't go away (and it's been 24 hours now since it began) is when I determined that it wasn't a pill--it's the herx starting. The herx!!

 All day today, I was incapacitated. The main herx effects are neurological, big-time, but it doesn't surprise me since the main target of Lyme borrelia has been my nervous system. It actually makes a lot of sense. The spirochetes in my brain/spinal fluid/nervous system are under attack, and dying off already, so the treatment is working quickly. It takes some people longer to herx, but I'm a highly (highly!!!) sensitive individual, so it only took me 24 hours.

 So here I am in the thick of it, I guess. Or maybe I haven't reached the thickest point yet. But I can tell you I wouldn't trust me to drive. No way. All I want to do is sleep, above all other herx effects. My vision is blurry, my fingers typing on this keyboard feel tingly, I feel confused about what day it is, I'm sweating some really nasty body odor, food tastes very different, and I'm borderline hallucinating.

 I think the Lyme are dying. And I'm detoxing.

 And just to run down the list of what I'm on for you, here's my daily protocol:

(In addition to a healthy diet of rice, steamed veggies, fruit, poultry, yogurt, low sugar, low gluten, low dairy, no caffeine, no alcohol)~

• minocycline (antibiotic)
• symbion (probiotic)
• cymbalta (SNRI)
• armour (thyroid)
• cumanda (anti-viral)
• samento (anti-viral)
• diflucan (anti-fungal)
• progesterone (hormone)
• iodine
• vitamin C
• vitamin D
• multi-vitamin (optional)
  

I may be adding tryptophan and colloidal silver to the protocol.

I'll keep you posted on my progression.
Also, I don't even know what I wrote above. I'll read/edit it later.... ha!

Love & Relationships

Oh, my poor, poor ex-boyfriends. How I feel for them all...

My last boyfriend and I were together in '08-'09, when my health started to take a sharp turn right into the pits. With no proof from any doctors or labs that I was legitimately, physically ill with Lyme disease, thyroid disease and chronic bacterial and viral infections, I had no ground on which to stand with the unwitting lad. 

"I'm tired," became my catch phrase. Although, I got savvy with other claims: "I have chronic fatigue syndrome." Or, when I neared my period, "I have pre-menstrual dysphoric disorder. It's real. Google it."

The only scientific proof I had on which to back up my chronic malaise was that I had lots of allergies, and I suffered from anxiety disorder. Well, those things aren't gonna get a girl a lot of sympathy or patience. And to be frank, I wasn't forgiving of myself either. I neither forgave nor accepted that I couldn't do the "normal" things other 20-somethings do, like dance, get drunk, stay up all night, go on backpacking excursions, or wear high heels, without paying serious consequences during or afterwards. Instead, I pushed myself into all of these activities, because I started to believe--like the doubters--that I had no excuse not to at my young age.

And so, when this particular boyfriend and I discovered a stunning, serene path around a large reservoir not too far away, we decided it would be fun to go biking along the 10-mile path. I borrowed a friend's bike, purchased a cheap helmet at Target, and excitedly met my boyfriend at the trail, never stopping to question whether I'd be capable of such a feat. All my friends rode bikes, and I used to ride my bicycle all the time when I was a little girl! It's easy, right?

I think I lasted three minutes. Just as soon as we approached the slightest incline, my legs gave out. My heart rate had surely entered into a medically dangerous zone, as I gasped for any oxygen I could get. My vision blurred and my head throbbed. I abruptly got off the bike, but I couldn't stand on my own two feet. I couldn't even feel that I had any feet. Or legs. Everything below my waist was jelly--and twitching like a ferocious jelly fish.

Two years later, that helmet is still tucked away in my trunk, untouched.

I think that men perceive me as athletic, only because I have a slim build. One man even hit on me once--at a bus stop of all places--with the pick-up line, "You must work out," proceeded by a creepy staredown of my body.

"No, I don't," I quipped.

My exes have all been athletic, which creates certain challenges in a relationship. The bicycling beau was also rather social, spending minimal time at his apartment and always building on his vast pool of friends. As someone who could get by on four hours of sleep and plan three social events in one night, he was on the opposite energy spectrum as me. That posed challenges, too. But I tried to go to as many of his myriad friends' birthday parties as I could, even if I was light-headed, nauseous and irritable as heck.

Other times, when I couldn't make myself go, I'd skip out at the last minute. I'll never forget when then-boyfriend, who was a software engineer for Facebook, asked me to accompany him to his boss Mark Zuckerberg's birthday party on a work night. I had just gotten home from a full work day, was feeling incredibly exhausted, irritable and anxious, and just wanted to lay on my couch, so I passed on the invite.

Nobody knew who Mark Zuckerberg was back in 2008, at least not on the large-scale, household-name status of current times. I knew he founded Facebook, and I thought it would have been really cool to meet him, but my health got in the way of a cool opportunity--only for the thousandth time. Oh yes, I totally lost out that night!

Though he was ever-so patient with me, I could tell that my boyfriend hit a wall after a Regina Spektor concert. He had bought us tickets for my birthday, but the concert was on a work night, in the East Bay, with a one-hour commute each way on the BART (subway that goes under the bay). As usual, I was exhausted and stressed out by BART. But it wasn't until I got to the venue and saw it was standing-room only that I started to lose my mind.

I knew couldn't stand on my two feet for a whole concert, so I sat on the ground, surrounded by thousands of standing concert dwellers. That didn't work, so we moved to the back of the venue and leaned against a wall. Since I had to get up early the next morning and was feeling faint, we left before the encore (so I missed hearing my favorite songs). I vaguely remember having a nervous breakdown on the BART ride back. I can't believe how difficult something so simple like going to a concert is for me sometimes; it sounds ridiculous!

I didn't ask to have Lyme disease and Hashimoto's disease. I wanted to enjoy the concert! I wanted to stand, dance, cheer, like everyone else, hear the encore, ride home smiling, get 5 hours of sleep and get up for work the next morning slightly sleepy, but nothing a coffee couldn't fix. My boyfriend was gravely disappointed in me that night, as was I.

When I ended up with a chronic, persisting case of sinusitis and tonsilitis right after that concert (which I now can attribute to my chronic Epstein-Barr and/or chronic pneumonia), the lad decided he'd had enough of my despondent debility and dumped me. I can't say I really blame him for being frustrated. Indeed, he was so frustrated that he proceeded to shack up with a very athletic, vivacious woman a manner of days after calling us quits with me.

I just wish I'd known I have chronic Lyme disease or any of my other diseases when I was with him or any of the others. Maybe they would have been more tolerant. Maybe not. I don't know.

A boyfriend of many years prior fell prey to my chronically nauseous years. We'd drive out to the coast, and I'd get car sick and make him pull over. We'd trek out to the redwood forest in Sonora and I'd have indigestion, get nauseous and start to cry. One time, after a bout of awful food poisoning, he had the privilege of carrying me to the emergency room for i.v. fluids. Another time, when I got mono and couldn't even stand, he put me in the shower, bathed and shampooed me while I folded like a corpse on the ceramic flooring.

Vacations with partners have almost always been highly detrimental to the health of our relationship. Three days in Miami with the beau who bathed me--to celebrate our three year anniversary--were three exhausting days. Weekends in San Diego and Carmel with the bicycling beau were ultimately disappointing, too. As a homebody who hates to leave her cats, borderlines on agoraphobia when stressed, and fears everything from flying to food poisoning, I can't say I exactly thrive when I travel.

The irony in this is that another part of me--the part that relishes in new experiences and seizing the day--genuinely adores the concept of a weekend trip to exotic destinations. The reality always seems to crush the fantasy, though, because--duh--I have chronic Lyme disease and a host of other chronic illnesses I never knew about until now. Any stress, even "good" stress, takes a serious toll on my health. (Now I understand why, as I've read reports about Lyme sufferers' inability to process stress.)

Last year, I dated someone for a couple of months, deeming myself ready to give relationships another go after my last serious breakup in '09. During that period, the stress in my life had reached a new threshold, as I purchased a home with a 10-day closing period, and moved from my apartment into the house all while courting my new love interest. (Everything is a struggle when you're as independent as me, responsible for all of life's minutiae on your own.)

At the same time that I was in transition, I was also managing the hiring process of a new director at work, which required me to interview multiple candidates. My job also sent me to a job fair to recruit office interns, and to Southern California for a conference--all during the couple of months I was dating this fellow and moving into my new home.

Luckily, and coincidentally, his job also sent him to Southern California the same weekend mine did! We only had one night together in L.A., which I ruined by drinking too much vodka at some swanky "chateau" bar, so instead of driving up into the Hollywood hills afterward like we had planned, I asked him if we could just go back to our hotel room.

Vodka, unlike wine, has a tendency to give me a bad reaction, and by "bad", I mean that I get giddily drunk almost instantly, and sobering up--while it also happens quickly--entails the emergence of an unrivaled moodiness.

That wasn't the only incident in which our romantic time spent together was ruined by my idiotic consumption of vodka. When he took me to Napa for wine tasting, I was so hungover from the previous night of drinking with a girlfriend in San Francisco that I essentially spent the day watching my guy taste wine after wine after wine, while pretending to sip on my own samples and fighting the urge to heave. Okay, I shouldn't say our day in Napa was ruined; we still had a nice time, but I wasn't myself because of the night before.

(At least, I haven't had vodka again since then. In fact, I haven't had any alcohol yet this year. :))

Ten days after I moved into my home, the same guy threw a costume party at his house, and unable to get myself out of bed, I ended up not attending. I had been looking forward to meeting his friends and being introduced as his girl, but instead, I slept and grieved. And, while he was tolerant, I broke things off, realizing that I was unable to manage that relationship and the mess that had become my life. Timing is crucial, and I knew it was the wrong time in my life for him.

Lately, I haven't had the desire to commit to anyone, which is a far cry from my romantic codependencies of yesteryear. It's not that my exes mistreated me, scarring me--quite the contrary(!)--they mostly adored and endured me in spite of my incompetencies! It's me who has reservations. Do I want to go through the same old thing again?

The concept of falling in love again before I recover is frightening, depressing and seemingly inappropriate. I shudder at history's notion of repeating itself. I shudder at the forethought that my next boyfriend will want to whisk me away for a romantic weekend. I shudder at any commitment, whether it's a housewarming party or marriage, when my health varies so unpredictably from day to day. I shudder at letting someone down.

But I want to get married, I want to have several children, and I want to travel to New Zealand, Ireland, Singapore, Vietnam, and the Czech Republic with the whole family in tow! I want to eat whatever I want from a taco truck and not worry that my stomach will turn... and to not need tissues for my chronic sinusitis... I want to take that helmet out of my trunk and bike through the hills... I want my boyfriend, husband, children to look up to me, to see me as strong and admirable, and not to tip toe around me.

Someday.

To my exes who endured my mood swings, emotional outbursts, inexistent stamina/strength, soreness, weakness, fatigue, nausea, panic attacks, headaches, and God knows what else, I'm not crazy. We've solved the riddle. (And it's so good to know, and to be starting intense, rigorous treatment!!)

But thanks for loving me anyway when we were together.

Attack on the BRAIN!!

It sounds like science fiction.

If borrelia burgdorferi spirochetes stay in the body long enough without treatment, they disseminate throughout organs and bodily systems. With time, the spirochetes cross the blood-brain barrier, at which point they make like Geronimo into spinal fluid and stake their claim on the central nervous system. This is called neuroborreliosis.

Neuroborreliosis' main symptoms are psychiatric, such as mania, mood swings, depression, delusions, paranoia, "brain fog", irritability, rage, panic attacks, "motor mouth", and generalized anxiety. The brain literally becomes infected and swollen, and stays in this state until the patient is treated. Various brain scans and MRIs show abnormal brain activity, white patches, inflamed tissue, and other signs of diseased flesh in the very areas that predict mood. Not a pretty picture. But I'm one of the affected.

People who know me would tell you I'm weird... I'm kind of off......... I'm friendly, extroverted, chatty, caring and sensitive, and above all, I mean well. But I talk too much about myself, I say inappropriate things without thinking first, my eye contact is inconsistent and awkward, and I'm unpredictably either excitably upbeat or down in the dumps.

The question begs, is this just my personality? Or is it the Lyme?

I remember my anxiety starting in elementary school. As you may have read in my blog entry entitled "Timeline of Symptoms (Historical)", my anxiety/panic disorder started around age 9--two and a half years after I contracted Lyme (which is about the normal full-dissemination period)--and then calmed down for awhile, only to come back much stronger in high school.

There was a point at which I couldn't leave home without having a full-blown panic attack. I couldn't ride a bus or elevator, enter a mall or movie theater, or attend class much of the time. Rationally, I know there was no threat, but logic has no place in an infected, diseased brain. I tried talking myself out of it, seeking therapy, doing yoga, meditating, smoking weed. I can say with certainty that SSRIs/SNRIs have been my saving grace, and without them, I wouldn't be functional. And yes, I truly, truly believe that Lyme is the culprit.

Lexapro and Cymbalta have enabled me to function, to live a relatively normal life. And while I seem on the outside to be--as I mentioned above--strange, loopy or self-absorbed, what you might see doesn't begin to explain what I feel. Nobody can see or feel what's going on inside me all the time.

In spite of my dependence on my SSRI/SNRI, which really just gives me the confidence boost to go out without having panic attacks, I'm an anxiety roller coster. A complete and utter mess on the inside. A constant freak-out. When I'm sad, I'm anxious. When I'm happy, I'm anxious. When I don't give a f---, I'm anxious. When I'm asleep, I have chronic, psychotic, violent nightmares.

But do you know what I mean when I use the word "anxiety"? You have your definition of the word, and it probably isn't the same as mine. So allow me to try my best to use what's essentially a limited vocabulary of these things we call words, to try to articulate this...... ahem.....It may help to start by explaining what my anxiety is NOT. It's not constant worry. And it's not brought on by stressful situations. I suppose the best way to describe what it is, is: urgency and eagerness.

Even those words don't fully justify the beast itself, but they're a start. It's like.......... it's like, wherever I'm driving, I have to get there right away, even if I'm not running late. It's like, whenever someone is talking, my mind wants to jump ahead three paragraphs. It's like I always need to be doing something, and when I'm not, I pick my skin or chew on my lips.

More than enough people have told me I need to chill out. But if my brain and spinal cord are indeed infected and inflamed, I don't know if I'm capable of it. Of course, the ultimate goal is to cure/kill the Lyme, which is nothing if not a major challenge once it reaches the fully disseminated, neurological state. If--and only if--I'm able to beat this disease, I have hopes of finally CHILLING OUT.

The biggest challenge for someone who suffers from both chronic anxiety and chronic fatigue is suppressing the anxiety without suppressing the energy (thus causing more fatigue). Psychiatric drugs aim to suppress the anxiety receptors, but often misfire and leave you with anxiety and a groggy, exhausted body (or no erections or orgasms). My psychiatrist and I have spent numerous sessions discussing this anxiety vs. fatigue conundrum and toying with various anxiety medications that left me in a perpetually sleepy state.

Is it too much to ask to have just enough energy--just not nervous energy?

Of course, this chronic and unwelcome state of anxiety could partly cause the fatigue. Being on alert forces your adrenals to pump out extra adrenaline and cortisol. Imagine this as a constant state. Now imagine the toll it takes on the adrenal glands.

I don't have all the answers, nor do I know what my future holds. But I'm glad neuroborreliosis is finally getting some much-needed attention in the medical community. It's time we recognize that a spirochete--a living organism--is what's making some of us crazy, weird and moody. Contrary to mainstream opinion, we're not doing this to ourselves, and it's not within our control. It's just nice to see Lyme starting to get some credit--after all, there was once a time [true fact!] when dying AIDS patients were told they were "psychosomatic". Yes. They were.