Sunday, September 21, 2014

Taking a Break

In light of my father's sudden and unexpected death last week, I will be taking an indefinite break from blogging. It sure has been a season of unprecedented losses. I need time to wrap my head around this. Wishing everyone the best.

Thursday, August 7, 2014

On Suicide in the Lyme Community: In Memory of Heather Askeland (1980 - 2014)

As my readers know, I was planning to write this blog post about my recent appointments with specialists in D.C. But, on Friday, July 25, 2014, my dear friend Heather stepped in front of a train and ended her life.

So, like my journalism professor at The University of Texas taught me on September 12, 2001, planned pieces take a back seat to breaking news. The summary of my appointments in D.C. can wait.

Heather Askeland wasn't just a Lyme friend. Over the past almost four years, she had become a close friend. At this time, I'm trying to grieve both a personal and communal loss. In this moment of overwhelming sorrow, I feel propelled to address something I thought I'd never write about—suicide in the Lyme community and factors behind it. 

At the same time, in this entry I'd like to honor the memory of my absolutely incredible friend through the ways she affected both me and the world at large.

Please note: Any personal matters I share in this post were publicly shared by Heather on various websites such as YouTube, her donation page, Facebook and other community sites, and therefore I feel are not a violation of her privacy. I don't claim to know everything she went through toward the end of her life, and I'm sure nobody does. But I include details of her struggle that I feel are relevant to the topic—both her story and Lyme suicide at large.

Heather in 2011

The online Lyme community averages about one suicide per month—a tragic and shocking statistic up there with military veterans, both groups that have been failed by the very systems set up to help us. 

I think this issue needs to be talked about. And I think that, while Heather's life was obviously uniquely her own, there are underlying commonalities in the Lyme experience that push people to take their own lives at an unreasonably higher than average rate.

When news broke of Heather's suicide, reactions varied—as they typically do—from despair to disgust. Folks ascribing to the "suicide is such selfish bullshit" and "she should have gotten help" type logic were quick to voice their opinions. To those people, I would ask they take a step back and try to get inside the head of a person so void of hope that they want to die. Just try.

Imagine, as in Heather's case, that your mother had just passed away, you just broke up with your significant other, you had to withdraw from your exciting graduate school program, and found yourself quickly homeless, broke, and sicker by the day.

Now imagine experiencing all of the above while an infection raged in your brain. Not just any infection, but an infection that alters your perception of reality, depletes your brain of neurotransmitters (such as serotonin and dopamine), and impairs your ability to eat, walk, or speak coherently. Imagine you've become debilitatingly weak, virtually bound to your bed, living in and out of hotels thanks to generous donations, and continuously sicker by the day in spite of access to acclaimed Lyme treatments which have, for whatever reason, been ineffective on you.

Maybe knowing that Heather went through all that can elicit a sympathetic response from the more judgmental audience. As I always say: less judgment and more compassion makes the world a better place.

Let me be clear: While I certainly don't encourage or condone suicide, and wish with my whole heart she was still alive, I can understand why she lost hope. I think it goes without saying that a suicidal person should seek help, but it's also a reality that often a suicidal person can't see past their crisis, and doesn't want help.

Here's the thing.

What non-Lymies don't realize is what a beast Lyme is. And herein lies one of the most fundamental problems in the Lymeshere. People chalk up Lyme behavior to "mental problems" without understanding why. Sure, most—if not all—late-stage, neurological Lymies have mental problems, but they are based in the biological and physiological. Simply put, we have actual brain damage. We aren't just whackadoodles.

Why is it that Lyme's closest relative, syphilis, can be acknowledged and validated for how it alters people's behavior, but Lyme is still commonly dismissed as insignificant.  I knew Heather well enough to know that she felt painfully invalidated and criticized for her unwellness, and that itself is one of the main tragedies that propelled her toward destruction.

Heather's deep-rooted feeling of being misunderstood, judged, and invalidated is something that Lymies know far too well. And it's a horrible shame. We feel it from family members, society at large, and our own doctors (until, exhausted by doctors appointments, we stumble upon one who's willing to help us). In addition, our treatments aren't covered by insurance. You heard right! Treatment for Lyme is so insanely expensive that most people either go broke paying for it or won't even start it because they can't afford to.

As if that's not bad enough, the treatments are very hit-and-miss. While some people do in fact recover, a lot are left just as sick (or sicker, even, than before) after doling out tens of thousands of their own dollars.

The system is broken, plain and simple. And until more research is done to find better, more effective cures, and doctors are willing to step up and acknowledge chronic Lyme disease, and health insurance companies are willing to cover treatment, and families start validating the reality of the Lyme experience, people are going to keep taking their lives. I hate that I'm even writing that, but it's true.

Now let's turn out attention to the beautiful, radiant, warrior spirit of Heather. Let's never forget how brightly her light shone on this world.

To me, Heather embodied the ideal human. Unhardened by the harsh world, she loved people, she loved cats, she loved to love. And boy did she love. She stood for goodness and fairness, equal rights among people of every race and sexual orientation, and her heart bled for those who had less. She gave what she could, when she could. She took nothing for granted. She was a talented musician and poet, although she never called herself either—and never realized how brilliantly talented she was.

Pardon my language, but fuck. The world needs more people like her, not less. We can't afford—the world at large cannot afford—to lose Heathers.

Today is Heather's 34th birthday. I want to wish her a happy birthday, but I can't. Is she dancing with the angels in heaven? I want to tell her I'll always remember everything, until I'm old and my body decrepit, while she stays forever a young, porcelain-faced beacon of innocence.

I think I'll tell her now.

Heather, I'll always remember how you were there for me, without judgment, last year when I hit my low point and didn't know how I'd ever get through it. You let me cry. You didn't criticize. You didn't judge.

I'll always remember when you fell in love with Kelly last year. You couldn't hide the excitement in your voice on the phone when you told me all about it. It felt, for a brief period, as if love truly could be the cure to all ills. You sounded as good as you'd ever had been—newly in love, and newly enrolled in grad school. I remember the happy timbre of your voice.

I'll always remember that you read my blog. This very blog. And would write me with questions or comments afterward. And you listened to my songs. Do you know how many people listen to my songs? Most of my best friends and family aren't interested enough to listen. But you did.

I'll always remember how deeply and unendingly grateful you were that my friend Bea allowed you to stay at her home in Palo Alto last summer. Or how much you loved Bea's toddler, Sienna, who had just developed a new fascination with ketchup. And how much we both wished I hadn't literally just weeks prior left Palo Alto for Tennessee so that you could have hung out with me.

I'll always remember our complex discussions about PTSD, and how very clear it was that this was a daily struggle for you.

I'll always remember your love for Ani DiFranco's music, and how happy you were when Ani issued a proper apology after unintentionally offending her listeners last year.

I'll always remember your angelic, porcelain face, flanked by perfect red curls. And how beautiful you looked when you smiled. Or when you posed in selfies with your kitties.

I'll always remember how hard the anniversary of Liberty Rebekah's death was for you, and how you hinted every late July that you wished you were with her. And then, this late July, four years later, almost to the day, you joined her.

I'll always remember your poetry. It never hid your struggle. It never lied. 

I'll always remember you and your unwavering heart.

Thank you for your friendship.

I'm sorry I couldn't save you. But I forgive you.

Love love love love forever.

Wednesday, July 16, 2014

A Turning Point? Live Blood Analysis & Candida

Seeing is believing. 

And in some cases, it's believing-and-smack-down-in-your-face-screaming that you have a problem. A problem laid before your very eyes.

This is what I saw when I looked into a microscope at my blood this week:

See all those white blobs and strings? They're massive, disgusting colonies of yeast and fungi taking over my blood and my body. I mean, we're not talking about a little bit of a yeast problem, folks. We're talking about a very serious parasitic issue.

Yes, all those white blobs and strings you see in my blood sample are parasites--living organisms who survive off sugar and fermented food particles leaking from my gut into my blood. 

This method of magnifying one's blood by 1000x is called live blood analysis, also known as blood microscopy analysis or blood smear. By sheer luck (or a divine plan, depending on what you believe in), I happened to be in the right place at the right time last Thursday—a quantum physics lecture on the dangers of EMFs—when I met a blood microscopy analyst named Joe. We discussed my situation and set up a time to look at my blood a few days later.

Let's step back for a moment and look at some healthy blood.

Okey dokey. Now we have something to compare it to. A healthy person's red blood cells should appear perfectly circular and spaced out, not overlapping. The spaces in between the red blood cells should be free and clear of any visible debri. 

Well, massive colonies of yeast/fungi are only the beginning of the problems Joe and I saw under the microscope. 

As you can see in both pictures of my blood, my red blood cells alone are hardly properly shaped, nevermind the yeast (or in this case, black spots which indicate an infection or foreign body of unknown origin). 

Parasites, infections, and fungi aside, what on earth is going on with my red blood cells? I mean, they look absolutely pathetic! They're not round, they're not spaced out, they are just one big clump of smushiness. Yes, I said smushiness. Yes, it's a word. Because I said so.

Based on these (and several other) pictures of my blood, it can be determined that the following are problems for me:

  • Systemic candida infection, also known as a yeast or fungal infection
  • A state of inflammation
  • Imbalanced pH level of my diet (too acidic)
  • Leaky gut syndrome (in other pics, we saw food particles)
  • Improper protein metabolism (I have to look into this more, but has something to do with eating meat, which I find very hard to avoid—and need to avoid!)
  • micro-organisms of unknown origin
  • Chronic dehydration
Now, I can't say I'm surprised to learn any of this. After all, I've heard these diagnoses more times than I can remember at this point. No, nothing shocked me beyond the shock of seeing things wiggling and dancing in my blood. That alone was incredibly cool to witness.

I guess hearing a naturopath tell me I'm too acidic, or that I have candida, or that meat isn't being properly digested, has always been an abstract theory that, while believable, has been easy to put out of mind. Out of sight, out of mind, right? I guess the same would hold true for the opposite of that saying: In sight, in mind. I can't unsee what I've seen.

Medical doctors—the ones who spent 25 years telling me it was all in my head—still dismiss all this talk as quackery. Mmkay. Anything that hasn't been peer reviewed, published in medical journals, and funded by Pharma is labeled quackery. If you have any doubt on the validity of blood smears or anything else I discuss on my blog, Google "Kris Carr", read about the thousands of people whose lives she's changed (including her own), and watch her documentary "Crazy Sexy Cancer". Do it. None of this is a joke. She is one of the most inspirational people currently alive.

A final note on candida and fungi:

While many people with health problems of fungal or yeast origin can see white fungi on their toenails, tongue, skin, or yeast coming out of their genitals, I have not. (I've never had "cottage-cheese-like discharge" either.) Yet these seem to be the symptoms you read about on websites on the subject. Don't let your lack of visible, external signs exclude you from consideration that you have candida. As I've learned, if you crave sweets, suffer from acne, chronic fatigue, brain fog and unresolved sinus problems, you likely have the kind of candida that's colonized your body internally. 

And if you bring it up with your doctor, be prepared to be shrugged off. They're not trained to understand it unless they see it on your toenails, in which case you'll be prescribed Diflucan.

Craving sweets is really candida craving sugar to sustain its life. No wonder I've found quitting sugar to be so difficult. When you quit sugar, the candida goes into starvation mode, and you become irritable, and in some cases, rather ill while dealing with the die-off. Remember, candida are living parasites, and when they die, they don't magically evaporate—their dead bodies (all those strings and goo in my first photo) are still floating around in your blood and travel through your detox pathways as they leave your body.

Bottom line is, killing candida will cause even more sugar cravings as they fight for their lives, and then you have to suffer even more before you get better. It's a lot like killing Lyme, and the Herxheimer reaction.

Speaking of Lyme, if you take long-term antibiotics, you automatically have candida. You'd better be taking probiotics every single day and not eating any sugar. Otherwise, while those antibiotics are killing off your Lyme spirochetes, you're inviting lots and lots of yeast and fungi to grow in your body.

While I'm sure my limited doses of antibiotics for Lyme haven't helped my situation, I'm pretty sure my diet is more my culprit. My chronic candida can be traced back to puberty, when I developed untreatable sinusitis and started eating dessert for breakfast, lunch and dinner. Recent antibiotics have only aggravated it, I'm sure.

I've got a plan to clean up my blood. It involves quitting sugar (I'm terrified, but I can't cheat anymore), getting back on a low dose of anti-fungal meds, doubling and then tripling my probiotic intake, and replacing breakfast with a vegetable smoothie daily. I just ordered a bullet something-or-other on Amazon! (I'm opting for a blender over a juicer, because fiber will fill me up and sustain me while juicing will leave me hungry).

I want to share pictures of my blood in six months and see nice, round circles, no clumps, and no more yeast! I can do it! It will be done! I'M SO SICK OF BEING SICK.

I have a feeling this could be a turning point in my health! It's definitely a big part of why I've been so darn sick. I'm so grateful for the opportunity to see my blood and know what my priority should be, because truth be told, it can be very difficult to manage all the coinfections, viruses, bacteria, metals, and other baggage that come along with Lyme disease. Candida is a common piece of the puzzle, and in my case, it might be THE missing piece of the puzzle.

I'll be back in two weeks with an update on my appointments in Washington, DC with a rheumatologist and mast cell specialist. See you then!

Thursday, July 3, 2014

Functional (But not Good) Days

2009:  That was the last time I had it all going for me. My dream job—a senior position in design and communications I had fought my way up the ladder to get. A loving, doting and extraordinarily successful boyfriend. And my band, Opal Axis, finally establishing a local presence through a series of Bay Area shows, radio interviews, and our EP release on iTunes.

I lost it all.

Can't work, no income. No boyfriend for five years now. No band, no performances. No advancing or progressing.

I've reached that point of not having good days anymore. At some point over the last three and a half years, they stopped happening. I remember feeling that, on these good days, my body and brain worked as they should. There used to be days, special as they were, when I could eat healthily, get a good night's sleep, and my body thanked me by serving me well.

Instead, I now alternate between functional—which is hardly comparable to what used to be "good" days—and complete, utter dysfunction. 

On my functional days, while I'm able to cook, clean, and run errands, I do so in a state of discomfort, pain, fatigue, and brain fog. On my dysfunctional days, it's difficult to use the toilet or watch the TV. I'm in bed, hopefully sleeping, but often languishing in sheer survival mode.

By God's grace, superhuman willpower, or random surge of good health, I was able to make the cross-country move in my RV last year. It's not something I could even think about doing in the state I'm in.

Living with undiagnosed Lyme disease for 25 years, I was mostly functional. I wasn't great, and my health never measured up to what it should have been for someone of my age, but I was able to function on a normal level most days.

In early 2011 I entered the dark tunnel of doom—antibiotics, antiparasitics, antimalarials, hormone modulators and immune modulators—and it's been hell trying to achieve homeostasis again.

Over the three and a half years since I started Lyme & co. treatment, I made some small but temporarily significant improvements that ultimately landed me in a worsened state. Each time it was one step forward, two steps back.

The more supplements I tried—no matter how benign—the more inflamed my body became. Because of my leaky blood brain barrier, every protocol every specialist put me on gave me more debilitating and longer lasting encephalitis.

When I refer to encephalitis, which I often call "having a reaction [to something]", I'm describing the absolutely debilitating feeling of brain swelling, a migraine, nausea and dry heaving, the inability to sit up or stand up, cognitive impairment, severe agitation, a fever and sweating.

Over time, these "immune reactions" have increased in frequency, last longer and are more difficult to put an end to. I'm exploring the possibility that I've developed what's called Lyme-induced Lupus, which occurs when the immune system becomes so burdened by a constant state of fighting infection (i.e. Lyme) that it ultimately falls into a constant autoimmune state, attacking the entirety of a person. Essentially, the treatments which are meant to help the immune system fight Lyme and its coinfections can actually exacerbate an already hyperactive immune system. The immune system loses its ability to differentiate between the bad (infections and allergens) and the good (your organs).

Next time I write, I will have returned from seeing a highly acclaimed immunologist and rheumatologist in Baltimore, Maryland. I anticipate he'll run a lot of tests I've never done and I may be closer to understanding what's going on now.

As much as I try not to allow feelings of envy or self-pity enter my headspace, I can't keep them out. There are times when I notice how fast the world seems to move around me, without me. I feel the years flying by and notice everyone else's successes.

I suppose a part of me used to enjoy the competitiveness of achievement. At a young age, I tended to excel in many ways, compared to peers. I graduated high school and college with honors, in both cases one year younger than my classmates. There wasn't much I couldn't do if I put my mind to it.

Now I'm 32, and everybody my age has multiple children, masters degrees and Ph.Ds, and I'm no longer achieving anything, which goes against my nature. Whatever disease I now have is definitely a challenge on so many levels.

Tuesday, May 13, 2014

Mepron is the Anti-Christ, and Happy Drugs :)

It probably comes as no surprise to those closest to me that I hit an emotional low point this winter.

Winter has never been my friend. But, take the coldest winter in 21 years (according to the Knoxville record books), add in the fact that I didn't get my stuff back from the movers until March 10th, throw in a Babesia flare-up which prompted me to try Mepron for the first time (dear God, it hurts just remembering that experience), and a few more personal issues, voila—and you've got the perfect cocktail of misery.

A note on the Mepron: the bottle comes with a suicide warning. And I can attest to the need for one. I've never actually, seriously wanted my life to end until I started taking Mepron. Sure, it probably works wonders at killing Babesia (one of my most serious coinfections which is responsible for my nausea, spleen pain, shallow breathing, and nightmares), but it comes at the hefty price of murderous rage both at others and oneself. The drug is literally mind-altering. It made me into another person. I don't think there are enough words to describe the feeling that took over me.

I actually started writing a will and planning an end to my life—that's how messed up I was. No, I didn't act on anything, but I made a mental note to start preparing for death. My will to live was completely and utterly gone. And I know it wasn't me, it was a change in my brain's biochemistry.

Not everyone has that reaction, but enough people do to warrant a suicide warning on the label. Even though I had only taken it for two or three days—at a very low dose—I had enough sense to know I needed to stop. Now I question how many of the disproportionately high suicides in the Lyme community were committed by people taking Mepron.

But that's long behind me, as is winter. And with my stuff back, my house is finally starting to feel like a home. Springtime in Knoxville is a stunning display of purple, lavender and fuchsia blossoms, so remarkable it takes my breath away.

And yet I can't attribute all my newfound, good-natured smiliness to the sunshine and explosion of floral hues alone. I've got some old fashioned pills to thank, too.

A few weeks ago, I told my doctor I felt my Cymbalta was no longer as effective as it used to be, but that every time I've tried to slowly taper off the medication, I suffer extreme and debilitating withdrawals. After new studies came out supporting the claim that many neuroborreliosis patients may need to be on SSRIs for the entirety of their lives due to the way Lyme damages our brain's synapses and receptor sites, I've become ever-so-slightly more comfortable with the idea that I'll need psych meds for life.

So, shifting course away from trying to quit Cymbalta (which would be enormously challenging in spite of its losing effectiveness), I've added a new psych drug to the mix: I'm taking 30 mg Cymbalta in the mornings and 5 mg Viibryd (a tiny, almost-but-not-quite-insignificant dose) before bed. I've also thrown some Vitamin B Complex into the mix, and I've got more pep in my step!

Even my PMDD (extreme PMS) symptoms—which normally include severe mood changes—seem to be improved. However, the new regimen hasn't helped with the physical symptoms of PMDD (cramps, cramps and more cramps). Then again, it's only been a month since I added the Viibryd and B vitamin complex, so it might take a few cycles before the pain relieving effects kick in.

I've always said the emotional symptoms of chronic Lyme are worse than the physical ones. Give me hip pain, a burning bladder, extreme sweatiness, tachycardia and whatever else, but keep the depression, anxiety, panic attacks, despair, and crying spells. Please.

Monday, April 21, 2014

Altitude Sickness AGAIN!!!!

A while back, I wrote this

And you'd think I wouldn't be foolish enough to repeat that mistake, but I guess I naively thought after having a positive experience trekking through Utah and Wyoming last year, I had suddenly, miraculously overcome my tendency toward altitude sickness.

Fools take note: One positive experience does not make a new precedent. It can actually just be one positive experience—a fluke.

But I wanted to see my Mississippi-based friends Lauren and Spencer so badly that I conveniently assumed altitude was no longer a threat to me. After all, they would be vacationing in a cabin in the northern mountains of Georgia, a mere three-hour drive from my doorstep. How could I miss this opportunity?

We would have a blast together, I told myself, like we always do when we spitfires get together—a collective energy that only three extroverted intuitives can build off each other. I don't get altitude sickness anymore! Hooray!

Now that I'm home, I can surely say it's nothing short of a miracle that we actually had a good time, because two-thirds of us felt as though we were on death's door—one-third of that fraction being me.

No, I don't think I'd ever had altitude sickness this bad—and I was only at 2,400 ft elevation at the highest pass. We're talking much lower than Yosemite or Cuzco/Macchu Picchu. The sick and twisted new precedent here is that I had the worst altitude sickness of my life.

My first night, I developed tremors like a Parkinson's patient, a migraine, and in the middle of the night, a drawn-out dry-heaving episode in my cozy little RV at the RV park down the road from Lauren and Spencer's cabin.

I felt as though my brain was being smashed with a sledgehammer, and I couldn't move from my fetal, dry-heaving position. I really couldn't move, I was practically paralyzed. I just wanted to die. I literally, honestly wanted to die.

Fake smiles - you can't tell how sick we were

For the few days I was there, I did not acclimate. I couldn't eat; I had no appetite. The migraine didn't go away. I had air hunger like you wouldn't believe (a term Lymies use to describe the feeling like no matter how deep you breathe, you're not getting enough air). My heart rate was insanely high. I thought my heart would pop out of my chest at any moment.

My plans to visit Asheville, NC, after Georgia had to be cancelled. Luckily the whole region is close to home. But the drive home—boy oh boy, that was something. I was in the thick of my PMDD, the week-before-menstruation window in which I become a raging monster every month. 

I was driving through switchback after switchback in a big ol' heavy RV. The roads were one lane by one lane. I was the asshole driver everyone hated, because I had to slow down significantly to make each turn. Cars kept passing me. I could barely see straight. I still had tremors. 

To make matters worse, a heavy downpour swept right into my path. During the storm, I found a cozy graveyard in which to pull over and unwind. And by "unwind", I mean, have a meltdown. A full on, self-screaming match.

A migraine on top of nausea on top of full-body toxicity, and no neurotransmitter support—no dopamine, no serotonin, no endorphins, just an obscene amount of rage. It took more than five hours to drive 180 miles. In case I haven't emphasized just how sick I was, I was insanely, ridiculously sick. I think you get the point.

Back in the comforts of my home, I called my uber-intuitive reiki master and dowser friend, Amy. She indicated to me through her energetic diagnostic tests that I was having a Babesia flare—one of my coinfections that thrives in low oxygen environments (i.e. high altitude). writes on their website: "Red blood cells are responsible for carrying oxygen to the body tissues. The Babesia parasite attaches, penetrates and lives within the red blood cells. Because of this, these parasites produce an immune-mediated disease. This results when the dog’s immune system destroys its own red blood cells in an attempt to kill the Babesia organism. This condition is called hemolytic anemia. The resulting low numbers of red blood cells and lack of oxygen cause weakness and lethargy in dogs."

I actually had a hunch I might be having a Babesia flare before I left Knoxville to go on my trip. I'd been off my Babesia medications for a long time due to their horrible side effects and my skepticism toward the medications' ability to fully eradicate microbes from anyone's system.

As it turns out, I may have made an already-bad situation (Babesia) worse by going into altitude. And, doing it during the week before my period just made an already worse-than-bad situation even worse. (Since being home, I gave in and got back on my Babesia medications again.)

I'm scared to stop doing things. You know, actually doing things. Living. It scares me that my body is this sensitive, and seems to just increase in sensitivity with time. I'm afraid that, once I start avoiding living a normal life, I'll give up on that passion that fuels me, and my excitability will be gone. I'm scared I'll become even more of a loner than I am, resigned to the illness. I don't want to stop having adventures.

After three years and three months of managing and treating this complex labyrinth that is Lyme, I'm still trying to figure my body out. Sometimes I can't say no, while other times it comes more easily.

My sister called a couple days ago. She'll be working with Syrian refugees in Turkey for a few months, and wants to take a weekend trip to Italy to visit some of our cousins. She asked if I'd like to go to Italy with her for a few days.

My actual response was, "Are you out of your goddamn mind? Do you know how sick I am?"

See, I'm learning :)

Friday, March 14, 2014

How are those Goals for 2014 Coming Along?

True to my proactive self (damn you, fatigue, for conspiring to hold me back!), I've gotten a running start on that list of goals I posted in January.

Here are the areas in which I've made progress:

0. Get my stuff back!
Oh, clever number zero, you. Starting off with a bang! I got my stuff!!!! Finally, finally.... What a crazy, incomprehensible little adventure that was. After the Department of Transportation and Budget Trucks and the courts of Jersey City ruled that we could all finally gain access to our stuff, several parties and I flew into Jersey City last weekend to claim them. This involved myself and a friend flying from Knoxville into Philadelphia (with a three-hour layover in Detroit), spending the night in Perkasie, PA, commuting into Jersey City the next morning, spending the day going through countless boxes in an unheated warehouse (it was thirty-six degrees in there), only to find that the overwhelming majority of my stuff was either broken, damaged, moldy, or, in a few cases, missing entirely. But, after nine months of living in a nearly empty house in constant anticipation of having my things, I finally have closure—and my dining table. And books. And clothes. 

6. Volunteer and/or work part-time outside of my house
Umm, I signed up to volunteer with the Historical Society, and was an absolute mess at their orientation last month. It fell on one of my "weak" and "fatiguey" days, and I thought I was going to require an ambulance at the facility. Then I was sick again on the follow-up day. So I'm putting my volunteer efforts on hold until I'm more stable.

7. Get another cat
Oh yes!! I sure have!! I adopted Sir Busterloo Fiddlesticks McGee, an orange tabby kitten from a local rescue group, in January. He's bundles of fun and helps fill the void left by Tiggy.

Wednesday, February 12, 2014


OK, Whack-A-Mole. I surrender.

With all the treating I've done for collaterally damaged organs, the last thing I'm interested in is adding another diagnoses or problem to my list. 

I mean, come on. Let's start scratching some stuff off the list already. But, no can do, says a tiny voice coming from my gallbladder.


While a high percentage of Lymies in Facebook groups have openly struggled with theirs, I've never paid much attention to gallbladder issues. Admittedly, up until a few days ago, I didn't even know what a gallbladder really does.

Well, thank you dear gallbladder for the first-hand, educational experience.
  • All that back pain I've been having on the right side behind my scapula? Massage therapists said it was due to using a computer mouse. (I haven't worked a full-time desk job in three years, so I've cut down on mouse usage by about 90%, and the back pain is now worse than ever.)
  • The pain in my diaphragm and rib cage that I've been told by naturopaths and rolfers were "hiatal hernia" and "ribs out of place"?
  • The intense nausea accompanied by more and more frequent bouts of vomiting and dry heaving--especially following consumption of greasy or fatty foods like onion rings and hamburgers?
In hindsight, this has been going on, intermittently, for a few years. Usually the pain to the right of my upper stomach is a dull, bruised type pain. Then there are infrequent times when it's sharp and stabbing. 

Earlier this week, I took to Facebook in pursuit of peer advice and personal experiences on gallbladder issues. And boy, oh boy, did I ever get what I asked for! Within a couple of hours, I heard from no less than thirty Lymie and chronic illness friends. They sent me private messages, they commented on my status, and they replied to my questions in the discussion groups.

It seems like everyone and their mother has been through this.

It's the new trend in wellness.

And everyone has an opinion. A strong opinion.


So I started to seriously consider bidding adieu to mine, as I found myself swiftly ushered into the ultrasound laboratory by way of my local, non-LLMD doctor earlier this week.

The ultrasound revealed absolutely nothing (which tends to be the case for most), so my doctor suggested I get a HIDA scan, which is a more savvy detective of malfunctions of the gallbladder.

But the HIDA scan gives you one to three years' worth of elemental radiation (depending on whom you ask), not to mention a toxic dye that gets injected into you, or the intense nausea that most people feel during the scan, or the fact that it causes artificial gallbladder contractions and bile stimulation.

As sensitive as I am (and I mean, hypersensitive), that's not an experience that would go over well with me.

I know, I know. Everyone's thinking, "Just endure it. You'll figure out what's wrong with your gallbladder."

But... two things.

First, even after the HIDA results are shown, the doctor will probably want to take mine out based on symptoms alone. She already expressed her interest in doing just that. "You'll want it out before you get pregnant. If you're having pains, they'll get a lot worse during pregnancy."

And secondly, I'm not sure the HIDA would show what I don't already know. I have chronic Lyme, which almost always correlates with a sick gallbladder--a chronically inflamed one. There's a name for chronic inflammation of the gallbladder: cholecystitis.

Regardless of what any machine can show, the question remains, do I want my gallbladder taken out? That's pretty much a decision left up to me.

So then I hit a wall. And the brakes.

What if I'm being too eager to jump on the gallbladder-out bandwagon? What if I can heal it naturally?

What if I end up being one of those people who has to take enzymes and anti-diarrhea medications for the rest of my life, or--worse yet--one of those people who loses control of their bowels after they eat fats?!

Besides, all my organs hurt from time to time. My spleen is the worst offender, with its repeated stabbing pains. And let's not even get into my kidney pain. So do I really need to start removing organs that hurt? I won't have any left!

I understand the need for people with severe gallbladder problems to have theirs removed. When it becomes serious, such as when a person develops jaundice from gallbladder disease, or is doubled over in pain from a stone lodged in a bile duct, it's time for it to come out.

Just to be clear, I'm not anti-gallbladder removal. Not at all.

I just don't think I'm quite there yet. 

Maybe I'll have to get it out down the road, and when that day comes, I'll know with confidence that I'm doing the right thing. As things currently stand, I can always have it removed--but once it's out, I can't put it back in.

I'm just grateful that I understand what was causing the rib pains and nausea. Knowledge is empowering, and has a way of making things less mystifying or frightening.

Finally, I'd like to share my gallbladder healing protocol. These are pretty simple, tried and tested, natural ways to detoxify the gallbladder and aid in the removal of stones and sludge.
  • Drink a tablespoon of raw, unfiltered apple cider vinegar in a cup of pure apple juice daily or as needed for spasms. It reduces the pain and helps flush blockages--try it!
  • Regular coffee enemas to detoxify the liver. A healthy liver is the root of a healthy gallbladder! A liver that is congested with toxins directly contributes to the full spectrum of gallbladder maladies. Coffee enemas are excellent liver detoxifiers.
  • Reduce caffeine and sugar. This is my never-ending achilles heel. Caffeine and sugar are terrible for the gallbladder (and the whole body, for that matter). Don't confuse coffee enemas with drinking coffee--they are completely different animals.
  • Castor oil packs on the gallbladder as needed for pain and detoxification.
  • Eat healthier fats. This means replacing traditional fried foods with flax oil, olive oil, and coconut oil as often as possible. Contrary to popular belief, not all fats are bad for the gallbladder, and healthy fats are known to heal it. I don't eat a lot of fried food to begin with, but I think this is a big issue for most of America.
  • Anti-parasitics can help clean up the gallbladder, too. A couple of my friends are adamant that their gallbladder problems stopped after following an anti-parasitic protocol. There are many over-the-counter products that do this, including wormwood, black walnut, clove, cats claw, garlic and many others.
  • Gallbladder flushes to remove stones--proceed with caution! This is a physically taxing experience that involves fasting and consuming copious amounts of olive oil, epsom salts, and fruit juice in certain proportions (you can find very specific instructions with a Google search). While it's almost always successful at passing gallstones, it doesn't come without its own set of risks. I'm not sure I'll be including this in my own protocol, but I've included it here for others to see.
Feel free to contribute your own suggestions toward a healthy gallbladder in the comments section below. Thanks, and may you all have a healthy and happy gallbladder!!

Wednesday, January 1, 2014

Eight (or Nine) Goals for 2014

Happy New Year! Fresh off a family-filled Holiday travel bonanza to/from Texas, I'm regrouping and looking to the year ahead. 365 days, 365 opportunities to improve my life.

I'm happy to kiss 2013 goodbye, but in harmony with my spirituality, have immense gratitude for all its lessons. I don't want to dwell on those things anymore, so I won't rehash them. I'm just happy for the opportunity to move forward. Oh—and by the way—I'm really proud of myself for achieving my (one and only) goal in 2013—moving from California to Tennessee. I'm so glad I did it.

While New Year's Resolutions are cliché (and the concept of dates illusionary), I embrace any opportunity to start fresh (and make lists. This girl lives for lists).

I don't remember the last time I made a New Year's Resolution. I definitely skipped the last few years. Anyway, not quite resolutions, these are more like goals—goals I hope to achieve in 2014:

0. Get my stuff back!
This is #0 because it's not in my control. Call it a preface if you will. All my stuff is still awaiting closure and release by the courts of New Jersey. All contacts claim there will be a resolution this month (it's about time!) so I'm really looking forward to finally seeing my stuff again. 

1. Remove crap from my diet, for God's sake
You know what? You can be the smartest, most versed person on food allergies, pro-inflammatory foods, and leaky gut syndrome, but unless you apply your knowledge to your lifestyle, there's no use in that knowledge. My diet is my #1 weakness. It always has been. This year, the gluten and cow's milk have got to go. I've done short-term gluten- and milk-free diets in the past, and noticed mild to moderate results, but I always lacked the sticktoitiveness. I know they cause inflammation, so why do I eat them? The convenience? Do I really not have the free time to make food from scratch? I'm already on a mold-free (no cheese, no mushrooms) and nutrition-dense (daily greens) diet, but it's the cow's milk and gluten that have the honorary badge of keeping my snot-gates open and my commitment to Kleenex in tact. It's time for an annulment. I'm so beyond over phlegm.

2. Be patient
I'm the least patient person I know. I'm antsy, impulsive, and rush through things. I give up easily, and I seek thrills like nobody's business. It's time I settle down, focus, pay attention, and discipline myself. A little less of the hyperactive gypsy thing and a little more of the grownup thing. On a related note: See #1 above.

3. Get off Cymbalta
I hate that I have to take an SSRI. I've been on either Paxil, Lexapro, Celexa, or Cymbalta continuously for, umm, twelve years? Thirteen years? I generally defend this drug dependence with one of the following: "My neurotransmitters are really damaged from neuro-Lyme" or "Quitting is impossible". Umm, yes, and no. Yes, withdrawal is the worst form of torture I've known, but the Cymbalta is not good for me, and I always muscle test poorly to it. I've fantasized about going off it for years, and consulted with several psychiatrists about this. Now I know what I need to do—taper very (very!) slowly, and add neurotransmitter support as I go along. I'm absolutely terrified of the withdrawal, but if it becomes absolutely necessary, I can just slightly increase the dose until the feeling passes. Come hell or high water, I'm getting off this poison in 2014.

4. Stop dwelling on the past
I waste an exorbitant amount of time missing or longing for things or people. I also hold onto painful woe-is-me memories like bacteria on a sponge. Yes, people have caused me pain, and yes, I have been struggling for an insanely, ridiculously long time now over something that happened early last year—but I'm done crying about it. Praise Jesus, Buddha, and Mohammed, I'm finally starting to see the light. This year I'm going to make an extra effort to push such thoughts out of my mind and embrace the beauty of now.

5. Read the whole stack of books I bought in 2013
I really like to buy books and then not read them. So I've placed a temporary moratorium on buying books until I finish the nine books on my bed stand.

6. Volunteer and/or work part-time outside of my house
Working from home on graphics does not support my ongoing effort to get out more, so I'm actively looking for opportunities to have more human interaction. I've already begun a dialogue with a woman at the East Tennessee Historical Society, which is accepting volunteers. I know my health isn't exactly stable yet, but I can't keep waiting around for it to get stable enough (what is stable enough, anyway?). If I'm a volunteer, they can't fire me. Ha! And if they like me, and if I get better, maybe they'll hire me part-time. It's a win-win opportunity, methinks.

7. Get another cat
Another cat?! This is actually a selfless endeavor. Okay, maybe it's a wee bit selfish. But Ocey and Juju, who are not bonded with each other, really miss Tiggy, who bonded with both of them. Ocey is especially in need of another cat to mother. The poor girl previously devoted her life to grooming and cuddling with Tiggy, but sadly, Juju won't let her. Now Ocey insists on licking and sleeping on my arm/hand at night, which is cute but not conducive to sleep, and she has separation anxiety whenever I leave. I hope to find a feline-friendly kitty that Ocey can spend all day licking and cuddling!

8. Fall in (requited) love
Don't roll your eyes! It may sound cheesy, and I know it can't be forced, but I am trying to manifest love for myself this year! In 2014 I will hit the five-year anniversary of the last time I called any man my boyfriend, not to mention the last time I was in love with somebody who loved me back... five years!! I promise I'm not in a rush (clearly, ha), and I won't settle (duh). But I'm manifesting this—I am! This is going to be the year I find Mr. Right. I feel it on the horizon!! It's my time.

Wednesday, December 11, 2013

The Rolf-Induced Detox

Holy crap, this disease is a bitch.

My most recent diagnostics indicate that my borrelia numbers and macrophages/monocytes are off the charts high (the latter indicating chronic infection in the body). I have a fever around 100 degrees on most days, and no energy. By the time I'm up and showered, I'm back in bed. It's like having the flu on a daily basis.

As my regular readers know, all the medications and supplements I've taken over the last three years made me immensely sicker—practically bedridden on most days. So I quit everything earlier this year to let my immune system stabilize.

Well, while taking a break from oral medication, I thought it would be a good idea to focus most of my healing energy on my skeletal structure, since I'm increasingly struggling to stand on my feet.

So, over the last three months or so, I've seen orthopedists, chiropractors, a rolfer, and taken a yoga class.

Each specialist has confirmed without dispute that I have flat arches, rotated ankles, bunions, one rotated knee with damaged cartilage, a rotated pelvis with one hip bone two inches above the other, a torqued trunk, a 37-degree curvature in my spine, and displaced discs in my neck. Their eyes enlarge when they study my bones, and they seem surprised that I have any balance at all.

So, this fall, I finally decided it was time to fix this, if possible. I'm thirty-two years old and deteriorating faster than a peach in the summer sun. If I have any hopes of being physically mobile when I hit middle-age, this has to be given proper attention.

During my first session with the orthopedist, extra attention was given to adjusting my feet, hips and spine. Bones were popped and cracked left and right.

Before I could even pay and get to my car in the parking lot, I felt a case of encephalitis coming on fast and furiously. I took a seat on the couch in the waiting room, which turned into a two-hour torture session in which I could not move or open my eyes. I simply laid on the couch and cried. After two hours and lots of drinking water, I was able to stumble to my car and carefully drive the five miles home.

The worst of it was gone within twenty-four hours. So it was nothing compared to what came next.

Three or four weeks later, I saw a certified Rolfer. If you're not familiar with Rolfing, it's basically chiropractic work on steroids—bones are not "cracked", but rather, moved around with the pressure of strong hands. Bones, ligaments, muscles, fat, and lymph all get moved around and put "in proper place".

My sister, who shares some of the same symptoms as me (but to a much smaller degree), insisted that Rolfing would restore the arches in my feet. It worked miracles for her! Her testimony gave me hope.

My first session with my Rolfer lasted two grueling hours, during which a lot of pressure was applied around my armpits. When was the last time somebody pushed upwards, into your armpits? Probably never. It was definitely a first.

My shoulder sockets were realigned via my armpits, with painful pressure administered upward and outward. Then the Rolfer discovered that my right lung was not taking in as much air as my left lung, due to the way my right ribcage developed. So he worked with my chest bone, near my thymus gland, and my ribcage, in opening up my airways so my right lung could expand all the way.

Well, afterward, I was sore in the way one might be after hitting the gym. But I did not expect what happened next.

One. week. of. intense. detox. Detox like I had never detoxed in my life. Vomiting, dry heaving, diarrhea, sweating buckets, an acne breakout, and inflammation from my head to my toes (including a very inflamed ovary, in spite of my period having JUST ended).

It was one of those experiences where all I could do was lay in bed (or by the toilet), cry, pray for it to end, or pray for death to come.

A healthy person might scoff at the notion that a Rolfing session alone could do that to me—you would imagine it had to be a virus, or food poisoning.

But the naturopaths and various other experts with whom I inquired after the fact (including the guy who runs BetterHealthGuy), weren't at all surprised that Rolfing did that to me. A couple of them even pointedly asked what I was thinking doing something so aggressive.

Hindsight is 20/20, isn't it? I chock this up to another case of Leila being overly excited and under-cautious.

The consensus was multi-layered: For one, Lyme, babesia, and other coinfections like to hide out in fatty tissue, lymph, and bone matter. (You won't always find the bugs in your actual bloodstream, especially in late-stage cases.) So Rolfing mobilized them out of their hiding places, setting off an immune response, lots of dieoff, and well, you get the picture.

Suddenly my body was feebly trying to keep up with everything that was going on with my immune system and nervous system. Toxins were ambitiously circulating throughout my body (and as we discussed in the past, into my brain due to a leaky blood-brain barrier).

And here I was imagining that only medications and supplements could topple my system! Ha!

Okay, so... I can't do Lyme treatment—I can't tolerate the antibiotics or the herbs. I can't tolerate even minute doses of methylation supplements. And I can't take any thyroid medication anymore.

And now I can't do much chiropractic work without pushing the envelope.

I'm still reacting to a whole host of fumes and contaminants, electromagnetic fields, molds and food ingredients.

At this point, after all these somewhat repetitive blog posts, I think I need to focus my energies in a new direction. Right now I can't say what direction that is. I'll be brainstorming my options. Luckily, there's a never-ending list of directions one with my issues can head. If you Google "Lyme disease treatment", you will literally find thousands of ideas. And while it often feels like I've exhausted my options with nutritional support, methylation support, antibiotics, immune modulation, diets and energy work, I know I could spend an entire lifetime on treatments before fully exhausting options. (Stem cell treatment in India, anyone?) 

Just another week in the life of a Lymie... just another learning experience.

Wednesday, November 6, 2013


I miss everything. I'm stuck.....  somewhere between last spring and my future.

As much as I know we as sentient beings should live in the present, right now is a series of days, weeks, and months that I'd love to trade in for other months (preferably warm and sunny ones).

Why? Because I haven't been feeling well for the past month or so.... not well at all. And so I'm unable to enjoy or utilize the days—instead, I'm a prisoner trapped inside this faltering body, with a growing To-Do list and none of my belongings.

Yes, I miss last spring. I miss the unbridled adventure of driving my little furry family in our mobile house anywhere my heart desired. The beautiful, promising open road. The first bloom of flowers, the green explosion of life.

I miss......  feeling like things are happening—like life is happening. Being productive, getting somewhere. monster of a cat, Tiggy, who had more passion for life than my other two cats combined.

             ...driving twelve hours out of my route to see the man I loved (and still love) more than words could ever describe. Spending a handful of days staring down each other's souls in the best and worst ways. Hearing him tell me he desired her, not me. Saying goodbye. Detaching myself from him so he could be with her.

I lost a part of myself in losing him. I'm still trying to patch that hole, but it broadcasts itself like a flickering light on my dashboard warning me my oil keeps leaking...  leaking........ and leaking. The light flashes Every. Day. And every mechanic I see tells me the patch to seal the hole is out of stock.

That's what and whom I miss. I cry about them more than I should probably admit.

What I don't miss? California. I don't dream about it. My dreams entirely bypass those ten years and find their way back to elementary and high school years in Dallas, college in Austin, and trips to Syria—places for where my heart calls. I simply don't miss my years in California.

And to be sure, I'm unmistakably glad I made the decision to move to Tennessee. But, still, I'm stuck between last spring and what will become a beautiful life here in Tennessee. 

Bear with me as I elaborate; I know this post is long and somewhat rambly.

See, I'm stuck because, after multiple exhaustive attempts on both fronts, I haven't got my health and I haven't got my stuff. So I'm sitting here in mostly empty rooms, experiencing not only a physical and emotional relapse but a set of new symptoms on top of it—the newest development being my hips, legs and ankles refusing to stabilize the weight of my body. 

What slowly evolved in the lower half of my body over the last twelve months has reached Code Red level. I've gone from having some trouble standing to not being able to stand at all anymore. I feel like I should be awarded some honorary badge for declining to this milestone of absurdity. Now I'm waiting to see an orthopedist. (I can walk, but not stand).

As for my thyroid, which I've written much about in the past, I finally found a new endocrinologist who treats and understands both Hashimoto's thyroiditis and Lyme disease. While I'm thrilled to be seeing her, there is a waiting period involved there too. 

And (I may not have previously mentioned) I had to stop taking all my thyroid meds because I recently started having toxic brain reactions to them. Armour was barely tolerable, but Synthroid was absolutely intolerable—at any little dose. 

It's the first time in almost three years I've been completely off thyroid. Having no thyroid equates to an increase in fatigue. And boy, oh boy, when I say fatigue, I mean FATIGUE! Bam, I feel like I've had the flu for the last few weeks (but without the green phlegm or coughing. Hey, that's a plus!). 

I am seriously, wickedly exhausted. If I could, I would sleep all day and night. But this is better than the alternative—at least until I can get on T3 or T4 or whatever my lab tests indicate I need.

Then, there's this: I'm still living in a beautiful, mostly empty house, waiting for the judge in New Jersey who confiscated my belongings from the crooked movers to release my stuff back to me and the other plaintiffs. The legal process is painfully slow. Nobody involved in the legal system seems to care that, unlike many other cases, this one involves eleven people's personal belongings, which we all urgently need.

In the meantime, I've bought a new bed, a bedside table, a lamp, a couch, a dresser, and a shelving unit. I brought in the small TV from my RV. I bought some new clothes and dishes. I eat at the kitchen island, and my dining room is just four walls reserving the space for my beautiful, hand-painted, rustic dining table and chairs.

Maybe my stuff isn't in Jersey after all. Nobody has sent me photos confirming it's actually there. Maybe I'll never see my family heirlooms again.... my old diaries, my portfolio, portraits, love poems, photo albums, art I collected in Italy, Spain, Mexico, Argentina, and Syria. My jewelry, my shoes, my wigs, my extensive wardrobe made up of irreplaceable blouses I carefully collected over 15 years. My enormous collection of books, hundreds of books, many out of print. All my files, from report cards to health records; every formal document that identifies and confirms the history of my human existence.

Maybe I'm not meant to see any of my old stuff again. Maybe I'm supposed to shed all my old attachments—to start anew. It certainly would be in theme with the other losses I've sustained during this move. And how odd, really, that during my move I had to bid farewell to Tiggy and the other male who holds my heart.

Maybe there is a lesson in here somewhere. Maybe my guides are trying to pummel me forward through shock and awe.

So, when I say I don't want to live in the inert present tense, I mean that I want something to happen—an increment of productivity and positivity. I'm waiting.

On the other hand, I'm not just sitting around feeling sorry for myself. Once I see my new orthopedist and endocrinologist, I'll feel better about where my health is headed. And at some point, hopefully before 2028, I'll probably get my belongings back from the judge in New Jersey—if it's meant to be. 

If I can't be living in the present, at least I can focus on the future! I have to think positive.

Present, be blurred like an indistinct haze.
Painful past, be torched like wasteland ablaze in a cropland conversion.
Future, carry me forward with promise of golden glory.

Now, before you start thinking, "Sheesh, you self-pitying woman! Pick yourself up and make the best of what you've got," let it be known I haven't let this slump completely take over my life. In fact, I wouldn't be surprised if—to the outsider—it appeared I was enjoying every minute of an exciting life.

This is because I hide my malaise well. And also, and as long as I can get out of bed and into a car, I find myself partaking in exciting little explorations on a regular basis, because East Tennessee is absolutely awesome—and there is no way I'm letting my health stop me.

Does my health slow me down? Of course. Some days, I can do nothing. But does my health stop me? No way. Simply being alive, to me, is more of a gift than it's ever been, and there are ways to get around the fatigue and headaches (ahem, coffee).

So, I'll finish off this post on a more positive tone. 

Over the past few weeks, life has included such adventures as singing in front of a diverse audience at an open mic night, celebrating my thirty-second birthday with a few new friends at a local joint, going to the Foothill Falls Festival, attending a meditation and grounding class, designing and editing a restaurant menu, driving through the famous Cades Cove where I saw not one, but FIVE, black bears, and partying with a bunch of drag queens on Halloween.

Actually, I'm glad I just sifted those recent memories out of my brain and into a list. I think that I may have just realized that I'm getting out and doing more than I realized. And, in fact, maybe this present phase isn't so bad. 

I admit I'm scared. I'm scared and anxious, and feeling let down by the bodily shell that houses my spirit. (That trip to Cades Cove I mentioned above? I only spent two hours in the cove—but without any restrooms, I literally squatted and peed seven times! Hello, interstitial cystitis. Good grief.) 

I'm a bit stuck, but I'm trying to make the best of what I've got in the ways that I can. The human spirit is strong—stronger than the body. And an ailing spirit can debilitate a person much, much faster than an ailing body.

Sunday, October 27, 2013

Another Post on the Brain, the Gut, and Hypersensitivity!

All this treatment I've done since diagnosis—it hasn't treated anything. All it's done is stir up a bunch of toxins.

I can see it clearly now, both conceptually and as a symbolic image that I feel represents what I've been doing to my body for almost three years. 

Picture a source for drinking water; it can be a well, or a water tank, or a bottle of water. Now imagine sediment has collected at the bottom of this water source for thirty years. This water tank/well has been kept perfectly still, so when you drink fresh water from the top, you're not ingesting any of the toxins that have built up and hardened along the bottom over time.

Now imagine someone or something (i.e. an earthquake) comes along and shakes it hard, unsettling the sediment. It all gets mixed up. The water is now cloudy and chock full of silt, dirt, and metals. Would you drink that water?

I feel like that's what I've done to my body, especially my brain. Lyme, babesia, parasites, heavy metals, etc. all remained relatively dormant in my body until I was twenty-nine. Of course, I was not healthy. But all that icky, toxic muck had found a home intracellularly and in biofilms. It didn't move around. My body had developed a system around it that worked. 

And then, one day, I exiled all of those little invaders from their cozy hiding places. My attempt at stabilizing an out-of-whack biological state just further destabilized it.

When I was figuratively inducted into the Lyme disease club at the start of 2011, I was warned of many challenges I'd face. I learned to expect to 'Herx" from medication, a temporary worsening of symptoms prior to improvement. I was told this would be the result of microorganisms dying off.

(I was also warned that with such an advanced case, it would probably be impossible to ever get rid of my Lyme or co-infections. And I was warned of the medical establishment's ignorance and the corruption of the CDC and insurance companies.) 

I learned a lot in a short period of time, and felt prepared for the battle ahead. 

But nobody warned me that, somewhere along the way, my immune system could go haywire and toxins would cross my blood-brain barrier, fueling a chronic case of brain swelling. Not one LLMD or LLND or naturopath who had me on a cocktail of vitamins, herbs, antibiotics, hormones, binders, minerals, anti-depressants, blood thinners, cyst busters, enzymes, anti-parasitics, probiotics, or anything else, ever suggested a possibility of my developing new "hyper-immune reactions" or encephalitis.

As someone who is a much stronger creative thinker and writer than biologist, I'm not ashamed to admit most of the literature I've unearthed on this matter is far too technical for my fog-ridden brain. I can remember general ideas pretty well, but facts and details don't stay in my brain. As a result of my scholarly ineptitude, I proceed on this subject with caution. 

From what I understand, the heart of my recent struggles lies either within my immune system or my blood-brain barrier. Like everything in the body, these two are closely related and interdependent. But I can't decipher whether this dramatic intolerance to supplements is an actual immune reaction or a leaky blood-brain barrier.

Since I have neurological Lyme disease, it's already a given that I have a compromised blood-brain barrier. The spirochetes paved the way by boring their way into my brain. This is not news.

What I hadn't considered until my new chiropractor mentioned it to me last week is that I have a chronically leaky blood brain barrier. Spirochetes aren't the only thing crossing into my brain. He explained to me that anything that passes through my leaky gut can cross into my leaky brain. My history of stress, chronic bacterial and viral infections, spirochetes, toxic exposure, allergies, and leaky gut make me the perfect candidate for what is otherwise known as "leaky brain".

Here's some basic info about it, written by someone other than me.

I have to laugh at this. Yet another diagnosis thrown atop my mountain of conditions. And "leaky brain"? I mean, really? This is just too much. If I didn't laugh, I'd cry. And I really don't like to cry. So I'm laughing like a mad woman right now.

At least I finally understand why I can't tolerate anything anymore. It seems to make sense: with such permeability, tiny particles are able to leak through my intestines and blood-brain barrier, creating systemic reactions to the invaders.

When I was a child with undetected Lyme and parasites, I certainly had my share of allergies and immune reactions. But my body could handle a vitamin supplement, or a bag of Skittles, or clothes washed in scented detergent. Then, as a young adult, I could inhale second-hand smoke, stand near a gas stove, and drink a glass of wine — or a martini. Or plain water with a lemon wedge.

But no, I can't do any of those things anymore without triggering sudden, debilitating inflammation in my brain. I'm talking about the extent to where my whole day's plans are ruined and I'm in bed with a migraine. The list of things to which I react is growing. 

My world is shrinking. This is devastating for a person who wants to see the whole world, someone who craves the freedom of no limitations.

And this hyper-immune state/leaky brain/whatever unequivocally developed as a result of all the stuff my practitioners had me taking. Even now, after having stayed off the majority of that stuff for many months, my immune system/brain hasn't calmed down at all. If anything, it's at its worst yet.

I regret taking all that stuff. But how was I to know? Most of what I took was a natural substance already found in the human body, such as taurine, glutamine, magnesium, lithium orotate, B12, and so on. Almost all my Lymie peers were on the same supplements, and each item had a practical, proven purpose: 

"This one will improve digestion; this one will kill microbes; this one will thin your clotty blood." I found myself with a case of everyone-else-is-doing-it and this-is-scientifically-backed confidence. I had every reason to believe this was the way to health.

If I didn't take blood thinners, my blood would remain dangerously and unacceptably clotty, putting me at risk of stroke and continuing to inhibit my poor circulation. But I feel that, while doing its job thinning my blood, Heparin opened the door for toxins to cross my blood-brain barrier.

That's just one example, but you get the idea.

I've definitely learned that I'm the exception to whatever generally works for others. If having chronic Lyme isn't a lonely enough condition, having chronic Lyme and physically rejecting any treatment is an even lonelier existence. One one side I have the Lyme community urging me to continue with immunoglobulin and antibiotics ("Suck it up! You need to do this!"), and on the other side my non-Lymie friends scoff at my protocol for making me sicker. 

I no longer "belong" with the healthy or the sick.

If I ever hope to recover from this insanely limiting life, I have to heal my gut. According to the research I could find on the subject, healing a leaky gut will heal a leaky brain. Umm, okay, but healing a leaky gut is tremendously challenging—that is, if you want to eat normal food. You basically have to eliminate all of the most common food ingredients like wheat, dairy, and sugar, and I've already been down that road with little success in the past. 

Did I mention you have to stick to this for about three years before your gut heals?

I just don't know if I'm able to handle level of discipline again, or at least right now. I've worked so hard at my health over the last three years, and I'm in an emotionally unstable place right now. The very things I'm supposed to avoid are the things that give me the dopamine (joy) and energy I need to get through the day. Otherwise, I'll spend all my days in bed crying the day away. I know; I've been there.

As if all of this wasn't complicated enough, I'm reacting to some the very things that are supposed to help heal the gut and blood-brain barrier. Bone broth and specific herbal teas (such as marshmallow and nettle) are supposed to heal the gut, but I feel sick after consuming them. Go figure!

Detox methods and binders only go so far, but they seem to have lost their effectiveness. If anyone else has this same issue as I do, I'd love to hear about what types of detox have worked for you.

This is just so hard. Life is so hard. I really don't know what to do anymore.