a private story – URevolution

Backbone strangled, muscle tissue on hearth, bones buzzing

I’ll migrate inside you

I’m relentless

My deal with is your physique

It gyrates and bangs, clamors, and rattles

That is the type of ache that rages silently in

the caverns of marrow and suffocates hope.

A parasite upon the soul~

It drowns out the voice of God.

~Katie’s journal; August 16, 2012

After years of signs and numerous docs, I used to be identified with fibromyalgia in 2008 whereas dwelling in Santa Barbara, CA. Grateful for a “prognosis” (spoiler alert: it is not), I left the physician’s workplace with a prescription for an antidepressant and the recommendation to “go swimming.” This marked step one in me coming unraveled from my instinct as the boys within the white coats busted out their pads for scripts in a decade-long pursuit to pump me filled with serotonin. In 2010, chaos reigned over my physique and the fibromyalgia that I had been managing flared into an inferno of ache. It was as if the ache had its personal heartbeat, its personal rhythm, its personal battle music because it mocked my pathetic makes an attempt to defend my bones.

In desperation for reduction, I used my curled fists to bang upon my hip bones in an try and rattle the ache out of my physique. I purchased each sort of ache lotion conceivable, slathering myself head to toe whereas massaging electrical toothbrushes into my jaw and hitting my shoulder blades with wood spoons. I used to be a mad girl. My insanity and my mission — — my single-pointed obsession was upon one factor and one factor alone: reduction.

But nothing- no tablet, complement, weight-reduction plan, or mantra- supplied a level of what I sought. Simply cease hammering me. Simply cease squeezing me. Simply cease.

I gave up gluten, I gave up alcohol, I gave up sugar, after which sooner or later it acquired so unhealthy I gave up espresso. I adopted the AIP protocol, the lecithin weight-reduction plan, and the physique ecology weight-reduction plan; the ache did not give a flying fuck what I ate. After which the migraines set in. Searing into my proper eyeball and jabbing my proper temple like a caffeinated northeasterner with an ice decide on a mission.

The hunt for reduction from fibromyalgia is riddled with hope and insanity. From CBD to colonics, there was a distinct strategy every week, with each concentrating on one thing as a scapegoat to the ache. First was the medical goose chase during which my uninsured self spent years’ price of financial savings on assessments to verify hormones, genetics, meals sensitivities, mono, autoimmune, and sure, Lyme Illness. Your blood work is okay. The docs stated. Every thing appears effective. You look effective.

Then it was toxins. Like mattress bugs, toxins had been now the invisible and malicious wrongdoer that wanted to be purged out of my blood, bones, and bile. So off to the spa I went with a 24% APR bank card, spending cash I did not have for a form Tanned woman to stay tubes up my bum and flush my intestines clear. Ten colonics later, I used to be thinner and extra common, however the ache raged on.

Train and sleep, train and sleep, train and sleep. That was what the physician ordered. My Sort A persona was getting the train half carried out. I ran religiously, however every run was a extra profound warning that I wasn’t who I was and that 6-mile runs had been now not a part of my path as one insufferable mile jog slowly changed the working routes that had been the muse of my psychological and non secular well being since age 15. As my runs dwindled from 5 miles to three to 1 to zero, I started to really feel for the primary time within the sickness’s life…aged.

I used to be twenty-eight. I had been an all-star pitcher making headlines in highschool,and being the soccer staff’s star ahead staff. I used to be a runner, a surfer, and a yogi. I traveled from Connecticut to Charleston for my diploma in English and flew to California with the love of my life. I may do something. But right here I used to be, hobbling to the lavatory. ……

How did I turn into aged? What was taking place to my physique? Please cease hammering me? Please cease squeezing me. Please cease.

Thus started the pill-popping goose chase that drained lots of and left my physique a tragic, empty shell of serotonin and dopamine. I gave up on questioning why the boys in white coats had been so targeted on whether or not or not I used to be depressed. Simply give me the goddamn drugs. Simply make it cease.

All of this, as a substitute of reduction, resulted in me mendacity weak and lifeless in a hyperbaric oxygen chamber in Dr. Issele’s workplace of Santa Barbara for Different Most cancers Remedy, receiving oxygen remedy remedies {that a} journal article advisable for fibromyalgia. If I used to be an alcoholic, this is able to have been all-time low. As an alternative, I used to be a fibromyalgia affected person, and this was hell’s lobby. The exhaustion had heaved into my bones, making me too drained to pursue the hunt for reduction. As an alternative, I succumbed to the nice and cozy world of hospital robes and linoleum flooring as I surrendered into the spaceship-looking oxygen chamber and felt the embrace of the maternal nurses masking me with blankets and asking if I wanted the lights dimmed.

With fibromyalgia flares, it’s typically like time stops for you and also you alone. The flare ends. In like a lion, out like a lamb, you might be left along with your life unhandled and untouched since time froze you. You pop your head up and assess the harm. How a lot is recovering from this flare going to value?

I not too long ago learn a narrative a few girl who suffered from persistent ache and instructed her physician that her household simply did not perceive, and with three boys and a husband, she wasn’t getting any assist at house. The physician put a solid on her arm, and the entire household began pitching in. Out of sight, out of thoughts. 

What if ache weren’t silent? What if it weren’t invisible? What if it had been a noise or a coloration? What if the ache had a sound? 

Whereas sitting in a physician’s workplace not too long ago, I felt like I used to be in a science fiction film as my physique was screaming in agonizing ache however no one turned to look. I wished to show to the girl beside me and say, “Cannot you hear that?”

“However you look effective”

That is what somebody well-intentioned instructed me throughout a flare after I instructed her how a lot ache I used to be in (which, for my very own sake, I do not typically disclose). Till not too long ago, I did not miss work, and I did not complain. Sure, I appeared effective after I was effective (typically). Flares would go underground for weeks to months, even years, at a time. However I additionally appeared effective after I wasn’t effective.

I lay in a hospital mattress -confused, puffy, and questioning why I’ve clown toes. 

Am I in a distinct room? The place are my legs? Am I tripping? No, simply discombobulated. There are folks on this room. A nurse. What time is it? Is it over? The place are my legs? 

I am on ketamine. Or at the very least I used to be for the previous 4 days because it intravenously dripped into my bloodstream in hopes of reversing persistent ache as soon as and for all. Machines are beeping. I’m in a hospital mattress. Every thing seems like a carnival enjoyable home mirror. A nurse says one thing like, “Hey, hun”…she is fuzzy and good. I’m heat. 

This would be the first day of the remainder of my life.

Sixteen days after an FDA-approved ketamine remedy for persistent ache, I’m within the warmth of one other flare-up. My backbone is being squeezed with would possibly and fury whereas concurrently being jammed into my occipital. Somebody lit a match to my muscle tissue, I feel it was the satan himself. My jaw is locked together with all of the muscle tissue of my face- I had no thought I had so many muscle tissue in my goddamn face…..searing ache collides with my temples.

The four-day 5-hour lengthy ketamine infusions costing $2800 and totaling 1200 mg of ketamine infused into my bloodstream was the determined hail mary cross of ending this as soon as and for all and was a determined response to a physician throwing round an MS prognosis. The flare that ensued after the remedy was essentially the most mentally difficult of my life.

Dr. B is a delicate, trustworthy, and humble physician working towards ketamine infusions in New York. He was the type of physician who squeezed my toes and stated, “You might be gonna make it, child,” and also you felt like your grandpa was cheering for you. After I referred to as him crying out, “It did not work,” he refunded half my cash and as soon as once more talked about Lyme Illness.

He had been mentioning Continual Lyme upon our preliminary session, and I repeatedly instructed him I had examined unfavorable on 4 Elisa and Western Blot assessments over the previous decade. Dr. B had knowledgeable my already ketamine-committed thoughts that the testing for Lyme is drastically flawed and that these assessments don’t even check for the equally hellish coinfections that Lyme most frequently comes with. He talked about two labs throughout our session. I emailed them to myself as we talked and dismissed them altogether. Now listening to him as soon as once more, I sifted by means of previous emails and located the e-mail studying:

Lyme labs

IGENEx

ArminLabs

I googled fibromyalgia and Continual Lyme Illness and got here throughout a video the place Dr. Rawls tells of his personal misdiagnosis of fibromyalgia and the years it took to uncover that it was Lyme. Then he spoke about his signs and stated,

“Then, one evening, I finished sleeping.”

With that, I closed my laptop computer and lay on my mattress as if the wind had blown out of me.

Lyme Illness, you’ve my full consideration.

So far, I’ve not talked about sleep. All I’ve to say is that my story about sleep is healthier suited to be written by Stephen King. And as of now, that’s all I care to say concerning the matter.

Dr. B gave me the identify of a lyme-literate physician in CT. Per week later, I forked over $2800 and watched Dr. S refill 12 vials of my blood to ship out to IGENEx labs in California. For 3 weeks, I barely made it by means of work, downing kratom to carry again the ache and holding my breath for the outcomes. On Might 12, 2021, my IGENEx got here again optimistic for Lyme co-infections Bartonella and Rickettsia. I used to be at work when the outcomes got here. I walked into the lavatory, lay on the linoleum ground, and within the midst of gyrating stabs of undulating ache, I cried in utter elation.

Bartonella is hell and rickettsia isn’t any picnic. When it has gone untreated for lengthy durations (On this state of affairs, Dr. S estimates at the very least 14 years), typically individuals are on antibiotics or different remedy protocols for years. The remedy is complicated and multifaceted, as most of this journey has been out of pocket. But, it isn’t the life sentence that fibromyalgia is. I had a prognosis. I had a root trigger. I had validation to this nagging feeling that one thing had hijacked my mind and why I have never been in a position to stroll right into a Greatest Purchase for the reason that 90s.

“Oh, I had Lyme Illness. It’s only a month of antibiotics. You’ll be effective.”

The distinction between treating Lyme shortly after the preliminary an infection (Acute Lyme Illness) and treating it as soon as it has been left undetected for extended durations (Continual Lyme Illness) is evening and day. Common 30 day antibiotic remedy is out of the query as a remedy technique. Dr. S estimates that the Lyme chew was shortly (a month to 2 years) earlier than the fibromyalgia signs began in 2005. On this case, the spirochetes have now burrowed their approach into practically each bodily system, adept at drilling their approach into connective tissue and nearly being invisible to the immune system. Nothing has been unaffected. No system: cardiovascular, muscular, nerve, neurological, and neuropsychiatric. 

Over the subsequent few weeks, riddled with ache and face down in a pillow, I listened to each audible e-book obtainable on therapeutic Lyme. Slathered in tiger balm and heading off migraines that felt as in the event that they had been despatched from a demonic realm, I turned well-versed in spirochetes, the MTHFR gene, bartonella, herxing, detox pathways, mould, the drawbacks of antibiotics, candida, biofilms, and pure treatments. I pieced what I may of the Natural Buhner Protocol and started.

So why did I’ve to turn into a CSI detective to uncover Lyme illness misdiagnosed as fibromyalgia? Little did I do know that whereas spirochetes burrowed into my mind for the previous decade, the medical institution has been steeped in controversy over each single a part of Lyme illness, from testing to remedy.

Lyme illness. And its equal life wrecking co-infections might be argued to be an endemic and presumably a pandemic, in response to Dr. Dempsey in her discuss:  The Bartonella Epidemic. A silent and insidious one at that, during which contaminated ticks inject micro organism that may actually shapeshift into spirochetes, blobs, or cylinders as if in a Tetris recreation the satan himself designed, enabling them to drill into the tissue of merely any a part of the physique after which morph again into spherical shapes creating biofilms of pathogens that stealthily go undetected from the immune system all of the whereas scoffing on the Elisa and Western Blot’s pathetic makes an attempt to detect it and mocking the CDC’s archaic diagnostic instruments.

The IDSA’s 2020 Tips for Lyme Illness (which dictate insurance coverage mandates) blatantly ignores the physique of peer-reviewed medical literature, with 9 out of the 12 members having related ties to insurance coverage corporations, check producers, and the monetary achieve in patenting microbes (sure, you possibly can personal a microbe) all resulting in CDC requirements which can be as helpful as a pet flamingo within the insidious, rampant, and unrecognized epidemic of Lyme illness and its relationship with a large number of different illnesses together with autoimmune, MS, ALS, Parkinson’s, and Alzheimer’s. Not till persistent lyme and its remedy are coated by insurance coverage is the medical neighborhood expunged from medical malpractice and disgracing the Hippocratic oath. (Me).

However I don’t have the bandwidth to consider the IDSA. I can not energetically afford it. Self-care has turn into the act of radical self-preservation declared by Audre Lorde. I’ve been on Buhner’s natural protocol for a month now, and as anybody with persistent lyme is aware of, the method is way from linear. I’m taking out of labor and bed-bound every day, typically every hour at a time. I have no idea what lies forward. I’m grief-stricken, excited, curious, exhausted, offended, validated, disorientated-often all on the identical time. I’m many issues….. however above all, I’m a  #LymeWarrior

With particular because of Mother and Dr. B