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.