MY STORY

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NOW

As it turns out, I’m only half human.  A microbialess shadow of my former self, washed away in an antibiotic tsunami, deployed to wipe out an uninvited microbe, Borrelia Burgdorferi, bringer of Lyme disease.  Recent scientific discoveries reveal humans are dependent on their resident microbes - apparently it takes trillions to tango with our biological time keepers, metabolizers, immune system referees, mood signalers et al.  Every system in our bodies relies on these essential partners - eradicate them and we fail.   They’re  not hitchhikers, but our navigators.  When they’re destroyed, pieces of our biology go with them.  GONE.     

 

I’m quite certain I’ve spent four of the past eight years in bed, too drained to lift my head off the pillow, let alone lead anything resembling a normal life.  So things pile up, accumulating not only in physical mounds of papers, books, newspapers, unsorted sock drawers and over stuffed closets, unfinished projects, a garden gone wild with time debts mounting.  Friends fade, parties don’t get thrown, family drifts away, business ebbs, community work freezes and worst of all, my husband has slowly grown to accept that he has married a ghost.  I make unpredictable guest appearances in our life, crippling our ability to plan - after all, who is willing to take a chance on an 80% no show policy?  I slip over to the pool not once a day, as before, but when I am not profoundly fatigued and have slept fitfully the preceding night which means 2-3 days a week, if I’m lucky.   I can walk now for about an hour before really needing to sit down which I can only do for 5 minutes due to wrecked joints, weight gain and weakened muscles.  So I lie down, a lot.   An awful lot.

 

My passport once crowded with stamps expired, my ID’s no longer needed because when you don’t leave the house, no one needs to know who you are.   Tango heels were stored years  ago, you must at least walk to lose yourself in the swirl of three minute assignations across dark, enveloping milongas.  No more hiking, river rafting, mountain climbing, running, museums, gardening, working, traveling, walking, dancing, dancing and dancing.

 

In short - a tiny tick conspired with a slew of unwitting doctors to wipe out my life as I knew it, while no one was paying attention as trillions of life giving microbes were hunted to extinction in my gut, leaving me with endless fatigue, insomnia, diabetes, obesity, and seemingly no way to restore what had been taken from me.   

 

Until that C.Diff infection changed everything….

                                                                                                           

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 INSPIRING TRUE LIFE STORY…MAYBE

Athlete, Horse, Dog or Dolphin "Come Back" Movies become my Favorite Film Food.

It’s the spring of 2012, I’m trying to recover from Lyme, kidney stones, knee surgery and growing sicker and fatter by the day from too many antibiotics my Lyme doctor keeps insisting I take.   I am so weak at this point and unable to concentrate that I read less  and discover Netflix.  I hadn’t really watched TV since I was a kid.  Seriously, who had time for that?   I gravitate to “True Life” stories of tragedy-turned-into -triumph flicks!   Injured athletes with however many legs or no legs somehow make a come back.  

 

Because it’s NEVER occurred to me that somewhere at the end of all this I would not get my body and LIFE back.  Not for one day.  Despite all the evidence to the contrary, I STILL hold onto the belief, through the endless lost days of staring out my bedroom French doors at clouds puffing past the neighbor’s trees, that I am going to get healthy again, walk normally, travel and DANCE.  It’s no longer a mystery to me what happened and what I am going to do about it.   Research is pouring in, treatments 5-10 years away, clinical trials going on now around the globe.

 

Naturally, on my “good days” I do as much exercise as my body allows and even make a break for the pool before heading to bed no later than 6 or 7 pm.  I try to cook, shop, pay bills, in an endless cycle of catch up between paralyzing “lost” days.   I work on this project.  A little reading, perhaps some THINKING, and putting one more piece of this thing in place.  It’s taking a LONG time.   Twice the time, in fact, but like those funny house mirrors that distort your true shape, my sense of horizon is always a bit out of reach.   But it’s there, at least, it’s there. 

 

My Health History hints at my former life:  Athletic, traveler, radio journalist, business woman, cook, tosser of parties, environmentalist, preservationist, contractor, designer and most passionately, Tanguera.   My normal adult weight with muscle was 127 lbs.   I was active at least  4 hours a day which could mean biking, swimming,  jogging, skiing, weight lifting, dancing and walking anywhere I wanted, museums, city streets, country roads, no limits.   And friends, I had dozens of them, in multiple countries, cities and languages, everywhere with visits in both directions  - a joyous feature of my life.   I was generally cheery, upbeat, occasionally caustic with an annoying sarcasm I no doubt inherited from my father and along with a sense of skepticism that has served me well as a journalist and now author of my own experimental medical treatment.   

 

As an athlete and dancer I was keenly aware of my weight.  I never dieted after failed attempts as teenager - remember the grapefruit diet craze?  The joke being I was 115 lbs and what on earth did I need to lose weight for anyway?  So I stopped with the calorie restricting fad nonsense, which included doing Weight Watchers once which left me hungry anyway.   As an adult my weight seemed to fluctuate throughout the year between 127 and 136 lbs, I now realize, with the seasons.  When I hit my late 30’s, I, along with the rest of the country, “carbed up” since I was so active, but instead I plumped up.    At age 42, realizing that I could not exercise my way out of bowls of spaghetti, I changed what , not how much,  I was eating  and lost the plump, effortlessly.  No junk.  No bread, pasta, grains, sugar, refined ANYTHING.  Lots of vegetables, protein, nuts and high fat dairy, the latter not so good for the cholesterol levels, but the weight melted and STAYED off.  Effortlessly.  For years.  Something was working.

 

And then something  stopped working.  In 2007, five years after I went “high end grizzly bear”, I experienced baffling upticks in my weight that did not revert.   My diet didn’t change, my blood work didn’t change, my hormones hadn’t changed, nada.  Except  something was changing my metabolism. Project Tracking

 

Suddenly in 2008 my blood sugar rose, along with my weight.  Pre-diabetes, right? I charged in with determination, taking my lifestyle to task by further refining my  diet to NO sugar, more vegetables, low glycemic etc. My fault, right?  My responsibility to change, right?   More exercise, blood work marker charts, tracking when I’m eating, sleeping, what I’m eating etc.  What I don’t realize is I’m racing unseen antibiotic demons! My gut is literally being dispossessed of its inhabitants. My metabolism slowly begins unraveling, decimated by repeated antibiotic bombardments.  

 

The  damage spreads out across the years.  It’s consistent.  It’s cumulative.  Antibiotic History

 

My blood work gets worse.   Project Tracking

 

My doctors applaud my health tracking efforts but have absolutely nothing to say regarding WHY this is happening other than vague “it’s age” and “it’s menopause” or  “ it’s your genes” and keep up the good work.  

 

That same year I tear my left posterior tibial tendon, the one you need to WALK.   LIFE ENDS as I know it, BUT of course I’m going to get better, right? Ok, four doctors and two years later I DO get better (thank you Dr. O’Malley at HSS) but unbeknownst to me I also get bitten by a tick, most likely on Fire Island, in 2009, right after I’m married in June. I never see the tick, no rash, just a steady roll out of symptoms that get misdiagnosed for two years. 

 

(The two Lyme tests I had been given in 2009 and 2010 had come back BORDERLINE with recommendations to retest in a few weeks were never followed up on and I was told were NEGATIVE.  Just recently, as I’ve dug through my blood work panels did I discover these “oversights.”)

 

Again I desperately try to outrun these latest symptoms which I blame on my life style.  More health charts, exercise organic this, grass fed that, wild catch this etc.

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YOU’VE GOT LYME!

By the time the Lyme was finally caught  in June of 2011, not by my regular (now ex) GP,  two years had gone by.  It had corroded my joints, weakened my major muscles, invaded my nervous system, heart, organs, brain, causing numbness in my extremities.  It froze my jaw and facial muscles, slurring my speech.  I had blurred vision, dyslexia, uneven handwriting, cognitive problems, black-outs, body paralysis and crippling fatigues.  Doc said it was “vitamin D deficiency”???!!!

 

I change doctors.

 

Naturally I am relieved this nightmare has a name, but then enter into a turbulent year I can only and accurately describe as my own personal “annus horribilis”:

 

I am treated (both under and over) for Lyme, suffer drug interactions (because no one is paying attention to multiple prescriptions under multiple doctors), endure Kidney Stone HELL(procedure backfires clogging my ureters to create the WORST 2 weeks of my life), have knee surgery, and  alarming weight gain.   And finally to top it all off, in May of 2012, a C.Diff infection.

 

A month before, in April, after being on antibiotics for 7 months  straight ,  wondering when these gut hollowing  assaults were going to end, I put on  8 lbs in one week.   GASP! Something was going on here that was not Lyme.  Lyme does a lot of bad things, but it does not make you fat!  A vague remembrance of some Gary Null show mentioning that antibiotics make livestock fat…could there be a connection? 

 

I didn’t have much time to ponder that possibility because the following month’s mega dose of antibiotics was a broad spectrum bomb, CEFTIN delivered its own dark gift. Within a few days of starting this drug, I am spending more time in the bathroom than anywhere else.  I frantically call my Lyme expert in Mt. Kisco.  His on the ball PA correctly urges me to get to the ER.  “Why I ask?”  “Because you probably have a C. Diff infection.”    My head blows off with anger and frustration.  NO ONE mentioned or warned me about the dangers of taking all those antibiotics. I am flabbergasted that  my Lyme doctor casually suggests I take Flagyl with an “oops”, “sorry we couldn’t help you” send off.  (with an infection that kills 15,000 people a year in the US, the equivalent of 60 jumbo jet crashes!) BTW Lyme doc does not know to this day whether I survived or not.

 

Naturally all my other doctors wanted me to take MORE antibiotics.   LUCIKLY I remember a Science Times  article from 2010 about a woman who had an FMT to treat a C.Diff infection.  “I want one of those” I announce!  My protective GP cautions that FMT’s are not sanctioned by the FDA, I reply that the drugs that GOT me here are.  My unhelpful GI, after claiming he’s barely heard of FMT’s (even though they’ve been used for years in major hospital centers by enlightened gastroenterologists to save C.Diff patients lives) urges me to take Vancomycin.  No thanks! 

 

I take the Flagyl anyway.  Makes no difference, so I google : “FMT Manhattan” and BANG I get Dr. Lawrence Brandt, the go to guy for this procedure in NYC.   He takes me on short notice, for which I will forever be indebted.   My husband, the anointed donor, gets the basic blood and stool screenings and we’re off and running, one August morning, Tupperware container in hand, to Bronx Montefiore Medical Center for the procedure via colonoscopy.  All poop jokes aside, I feel better the same day.  My husband’s microbes push back the C.Diff  invaders  and I check out of the bathroom, I am well.

 

ALMOST

During my FMT research, I notice an article suggesting that there are links between gut flora and weight and type 2 diabetes.  WHAAA????  What could one possibly have to do with the other?  A tiny surge of hope goes through me.  Could this be linked to the cow thing?  Hey Wait a Minute:  If an FMT could cure my C.Diff infection, could more FMT’s somehow alter my gut flora and change my weight?  It’s a very nascent but submerged thought, but it’s there.  Lab rats are having better luck than me at this point.

 

In October of 2012  I catch an article in the New Yorker by Michael Specter, “Germs are Us”, which prompts more light bulbs to go off.  My basic biology had been seriously tampered with.  Could I make it right again?

 

After the debacle of 2012’s C.Diff infection, I had COMPLETELY stopped the antibiotics.  Lyme or no Lyme, I refused to take another one except for emergencies.   But had the Lyme cleared?   Most of the early symptoms were gone. The mutual dumping of my Lyme doctor furthered my growing sense of being essentially on my own save for two or three practitioners I sincerely felt I could trust.    WHY hadn’t I been warned?  Yes I’d been told to take “probiotics” which I did, but even at that time it was known these completely unregulated freeze-dried bacteria were little or no help against massive antibiotic onslaughts.  Why didn’t my Lyme doctor know about FMTs?

 

After my FMT, I call   the International  Lyme and Associated Diseases Society (ILADS) the alternative to the CDC approved Infectious Disease Society (“hard to catch easy to cure crowd”) and ask WHY BOTH these groups  aren’t teaming up with microbiologists and gastroenterologists to restore gut flora they spend years destroying?  “Uhhhhh”, says the administrator, “not sure.”   This was in 2012.  Years later I still don’t see any serious collaboration between the two feuding Lyme factions and  Microbiome researchers.  I am convinced, at this point, HALF of the so called LINGERING LYME symptoms are caused by dysbiosis caused by the antibiotics.   See Lyme vs. Dysbiosis.  Am I crazy for thinking someone isn’t putting 2 and 2 together in some massive bias against other’s research?

 

In 2013 I catch wind of the American Gut Project, join and when my sample comes back: it’s deficient in comparison to more diverse guts, confirming my suspicions.  But was it that simple?  More diversity (whatever that meant) would equal relief from my immanent case of pre-(soon to be) diabetes, and obesity?   So would more FMT’s with a healthy person do the trick?  What microbes am I missing? Which donor? Are the DIY sites on to something?

 

I briefly take Metformin till I notice it “feels” like an antibiotic.  Studies indicate that it encourages Akkermansia  Muciniphila  to proliferate in the gut, which aids in weight loss.  Only problem is, I don’t HAVE that bug, and I know this due to my gut screenings. It makes me sick, so I stop taking it. 

 

In May of 2013, a year after my last course of antibiotics, I take Keflex for a toe infection which shuts me down.  I remember curling up, hugging my stomach, in our dark basement, as if I had just caught a kettle ball in the gut.  It felt like more DEATH in my innards.   It was about then that I start experiencing crushing fatigues.   

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NOT FROM LYME BUT SOMETHING JUST AS BAD

The long string of illnesses had caused me to start sleeping separately from my husband.  Often staying up late streaming Netflix et al.  I was spending very little time outdoors, a complete reversal of my former life.  I found myself going into the very dark, snug basement to try and sleep.  I would read books as had been my life time habit late into the night.

 

One morning, soon after taking the Keflix,  I could barely walk up the stairs from my basement nest.  It was so sudden and drastic I linked this heaviness solely to my gut issues not sleep disorders.  Turns out it was both.

 

This leaden exhaustion dragged me further downwards.

 

Years of agonizing jet lag ensue.  I could not sleep at night nor during the day.  I started missing more and more appointments, exercise, life.   The fatigues and mind fogs are crushing.  Exercise makes it worse, but on my “good days” I still swim, and do whatever I can to try and maintain some tone.   It’s finally in the spring of 2015 with the help of Dr.  Maura Henninger, that I sought out a sleep specialist and started the slow process of readjusting my dark/light cycles.  Of course we now know that not only do our organs have their own circadian clocks, but so too our microbes.  So having lost many of mine, it’s no wonder every system in my body is seriously out of whack. 

 

The idea that “chronic fatigue” has no known cause is pure myopic nonsense. Unlike some members of the confused and baffled medical community, who stigmatized patients  with this condition for decades, I am completely CLEAR about HOW I got this way and WHY.   Recently it’s been linked  to gut flora disruptions.   Where are the studies comparing Lyme patients with antibiotic users and chronic fatigue sufferers etc?

 

It took me years to develop a sleep recipe to alleviate the worst effects of these fatigues and insomnia.  I’ve managed to reverse the ratio between good and “bad” days.  Still I can’t predict them and there is no credit of functionality built up for a few good days.  It’s either horrific jet lag paralysis or less-tired-can-sort-of-get-through-the-day and function with an underlying tiredness on my “good” days.

 

Medical culture is shockingly slow to change.  My very wise and patient GP mentioned a 5-10 year lag between research and when most doctors catch on.  I am lucky he’s one of the curious and enlightened.  But my standards at this time are pretty clear.  It’s not my job to know more about well established medical safety procedures than the doctors charged with treating me. It’s THEIR job.  After losing both my late first husband and father to completely preventable hospital-acquired infections, and after watching my current husband suffer uncontrollable septic contractions from a superbug given to him by unsanitary pre- surgical medical procedures, you can imagine my fury.  WHY don’t these doctors know what the rest of us can read in newspapers and magazines?   It’s FINE if I don’t know, (not really) but I’m not personally responsible for keeping patients healthy and alive.  Luckily I’m curious.  

 

It’s not my job to be on the cutting edge of break throughs in microbiome research if a  Lyme doctor is pumping me full of antibiotics.    ANY doctor who administers antibiotics, whether for surgery or in clinical practice, should know as much or more than I do on this topic.  Not knowing is at best lazy and at worst negligent and dangerous considering the rise of superbugs and our role in creating them, while we’ve been destroying our own biological partners and immune system defenses with antibiotics.  The ramifications are ironically mindboggling.   

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THE WAY OUT

There is nowhere I can go at this moment and get a series of FMT’s with a donor I trust in a clinic I trust (that doesn’t use antibiotic pre flushes) to attempt to treat my conditions. As an outsider I can, thanks to the abundance of the material, poop, and the relative simplicity of the procedure, do this on my own with strict screening controls.  I thought about joining a clinical trial, but after reading what Dr Jeff Leach is suggesting about what constitutes a healthy gut I’ve chosen to go DIY.  I’ve relied on the amazing research and work of others that is thankfully available on the internet.   I am gambling on my methodology and the premise that if we have stripped away our very nature by waging war on a part of ourselves we didn’t know existed till a decade or so ago, then I have to replace it using  FMTs with a HEALTHY donor and living dirty -now.   I’ll take the pills when they come out in 10 years.

 

In July of 2013 and article in the New York Times,  “Why I Donated My Stool" appears  describing the cure, using DIY  FMTs of a man with life threatening ulcerative colitis.  The donor, a friend, moved in for a month.  Her friend got better after repeated FMTs he performed in his bathroom.  No colonoscopy, no antibiotic “flushes”, no fuss, using  an enema bottle.  Just life-giving microbes from a dear, and healthy friend.  After reading this, I have renewed hope I am on the right track.   I continue my research on what criteria exactly I would need from a donor to improve my particular conditions.

 

By late 2014 my FMT project evolved into a group of papers.  Dr. Maura Henninger heartily encouraged me to pursue FMTs to remediate my depleted gut, but my “bad” days have slowed the process down by half.  

 

 In early 2015 I screened a close friend who passed most of my criteria (at that time) and we proceeded with five FMTs.  Three things happened:  My skin rash disappeared, my blood sugar levels dropped and I did not gain weight for a year.   Project Tracking

 

In 2016 Rebecca Rodriguez accepts the FMT website challenge and we start building this site.  

 

I do not know if my project will work beyond  some minor improvements in blood sugar levels - an upgrade of the Amsterdam study.  I do know, that scientists are RIGHT about the price we have paid for distancing ourselves in the most violent and silent of wars from our very microbial souls. My attempt to “rewild” my gut is an attempt to rehumanize myself.

 

Once, when I was 14 , I almost drowned in the ocean.   Lulled by the illusion I could handle the raging surf after a few short “ride the big wave lessons” from the previous summer, I foolishly dove in.   Immediately the fierce rip current and undertow sucked me under as I frantically struggled to get back to the beach as each new, furious wave smashed me into the sand, dragging me back under before I could escape.  As I grew weaker, my head barely making above the surface to gulp air, I was vaguely aware of people running down the beach parallel to me, their screams muffled by the monstrous waves coming in for another pummeling. The terrifying sensation of being completely out of control, at the mercy of the dark, churning water is the closest I can describe the year between 2011 and 2012.  A roiling, endless battery of health calamities, that I could neither escape nor outrun.  But I have and I will get better, thanks to the relentless curiosity of the Microbioneers.

 

A lifeguard pulled me out.  I sputtered and collapsed in the sand, relieved, shaking and grateful.  Alive.

 

Onwards…

 

Evelyn Tully Costa

October 2017

Fire Island