Thread by @1UnrulySquirrel

A Personal Thread

I don’t talk about this much on Twitter because honestly it’s my escape from thinking about or dealing w/ the effects of Lyme disease & the associated tick borne illnesses

I mean it-ALL DAY, EVERY DAY my life is Lyme

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#ONEV1
#ResistanceUnited

Rage tweeting & ranting about politics is my break from just how devastating #Lyme & the associated illnesses is

& the frustration of having to fight basically the same sh*t every day for more than 2 decades with no end in sight

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ilads.org/everything-abo…

The first time I was diagnosed w/ Lyme disease was in 1982 when I was 10 yrs old.

I was fortunate to have been diagnosed at all. I contracted from a tick bite I received on summer vacation in the Hamptons. I was given some antibiotics & told I’d be fine

No real follow up

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By 13, I was wearing knee braces on both knees every day & dealing w/ a non specific diagnosis of juvenile arthritis

No link to having had Lyme disease was made & I adapted to pain, random flare ups & years of wearing those knee braces

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At 16, this tomboy got here first real job (picking strawberries for a local farmer so I could buy Guess jeans come back to school doesn’t count 😀) as a cashier for a local garden center which would lead to a wonderful education & career in horticulture

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Again, I learned to adapt- to heat, humidity, physical & mental labor, sinus headaches, pain in all my joints etc

Thankfully, I worked for the same company throughout until 5 yrs after I received my masters degree

They absolutely made accommodations for me even though we
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Really didn’t have a handle on what was wrong & I still love them for it.

After my mother died, I moved back to the Hamptons full time & after a couple of false starts working for other companies, I started my own company

And adapted

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Then after receiving another infected tick bite (tho there had been others I worked outside every day after all & I was vaccinated w/LymeRix) my world crumbled

Or should I saw my health crumbled & caused my to slowly disintegrate before my eyes

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I was given two weeks of doxy & told that would take care of it

No more Lyme

Well, bullsh*t

I worked another 5 yrs running a VERY successful private horticultural practice w/ very prominent clients & 5 crews working everyday

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During that 5 yrs, I suffered from mystery illnesses that we diagnosed from muscle strain to depression to being all in my head while I slowly lost the ability to function

I suffered the full range of the Chronic Lyme spectrum - muscular, skeletal, NEUROLOGICAL etc

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All while being told that there was no such thing as chronic lyme

- even when doctors in Europe were describing & documenting the very condition I was experiencing

My work was my life & I LOVED every minute of it. I was blessed for many years to be able to do my job

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But after 5 yrs & the severe affects of my unknown misdiagnosed mystery ailment, I could no longer do the work I so loved to the level that I expected of myself & my employees

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My hip & foot would swell up so badly that I was running around job sites w/ one boot off just so I could walk

The worst was looking up on a way to a job I had been to a 1000 times & not knowing where I was - literally had this happen on my own street on my way home once

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Every day, I came home from work so exhausted that I was in bed almost immediately & was in constant pain.

Everything I had physically, emotionally & spiritually went to just performing the daily tasks necessary

I had no life other than that. My marriage suffered.
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Hand to God, My poor husband has the patience of Job to put up w/ my physical decline, mood swings, depression & eventually anger at diagnosis after diagnosis. He barely had a wife & every thing in our lives revolved around what I would or would not be able to do that day

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When push came to shove & I had to make a decision. I was very fortunate. The business I had built & my client list was valuable. I chose to sell it instead of letting it decline as my health declined & did very well for myself.

Most Lyme patients are no where near that lucky

After pretty much sleeping for two weeks straight (except for consultations to keep the business running smoothly for the new owners), I once again began the journey to getting help

I faked a limp (a limp I often got but wasn’t acting up that particular day) after the PCP
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I had told me that I was too young to be feeling this way & that there was a lot of stress in our lives at that time (my husband’s sister was dying & we moved her & her kid in so we could transition her kids into our care) and maybe I should try yoga

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To this day, I can’t hear that man’s name w/o rage building up in my heart. He cost me 7 yrs of treatment; of my life

Anyway, I knew I had to do something because he was obviously not gonna treat me so I faked the limp so I could get a referral to a neurologist

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Thank God for him. He wasn’t sure what was wrong w/ me but he looked me straight in the eyes, told me that I was absolutely not crazy & that there was definitely something wrong

He gave me hope for the 1st time in years when I was almost at my lowest point physically & mentally

I cannot tell what a lifeline that was. That hope gave me the strength to fight to find out what the actual f*ck was going on

&, after some trial & error (boy, there are some funny & some scary stories there), the medicines to control the pain & start to function somewhat
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Gotta take a quick break..will finish this thread shortly

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So, I have this random mystery illness that is slowly robbing me of my health, my ability to walk, my ability to work & honest to God, my ability to think sometimes

I have to make decision. Do I keep muddling through & drive my successful business, everything I’ve

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worked for since I was 16 yrs old into the ground or do I give up & sell so I can crawl into my couch and wait to just die cuz what I was doing certainly wasn’t living

TBH, it was at the point, there was no choice. I made a deal to sell my business & the client list

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That I had spent more than a decade cultivating.

I was very fortunate that I was very flipping good at my job, my life’s work. Selling my business, it’s assets & my client list worked out very well for me. I was also very fortunate to have married a man dedicated to

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For better or worse truly became the mantra because neither of us expected this, I was only near forty ish (lol)

Selling my business was the single most devastating thing, next to my mother’s sudden death, that has happened to me

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I’m still not over. I will never be over it. And the mental devastation after years of working 2 sometimes 3 jobs to pay to get my education, the years of this being my identity-it was what I loved-the sacrifices made, the pride I took in being a girl that had worked

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So hard in every single phase of this male dominated business, put up w/ bucket loads of bullsh*t, honed my skills & was finally starting to really achieve what I earned, of losing it all was soul crushing

Soul crushing

And I was physically, painfully sick to boot

Jeebus. I have to take another break. Reliving this just sucks

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Thanks for the patience everyone. Let’s try this again.

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Now, all through this, I put my faith in the medical system so much so that I was still seeing the PCP who treated me so badly cause I was caught in the insurance/living in a rural area loop

But, the neurologist gave me the hope that whatever was going on was real

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As other locals & folks in my business started hearing why I was selling & how sick I was, one thing kept coming back to me (& my husband) over & over again

“Sounds Like #Lyme”

“Tertiary Lyme”

At a yard sale I had, a total stranger (wearing a knee brace btw)

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Took one look at how I was walking, my exhaustion & the way my hands were crumpled and flat out told me that Chronic Lyme was real & she would bet her life that was what was wrong

There was even another well known gardener, business owner & woman that had recently died

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And the family was fighting to have Lyme disease put on her death certificate as a cause of death (they won the battle btw)

I was still so exhausted that it took me a while for it to truly sink in but locals esp were telling me that everyone had sh*t like this going on

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They kept saying too bad Dr Burascano finally gave up

I must have heard that a hundred times from every old South Fork local that i came in contact w/ for 6 mos

Dr Burascano? Huh? who the hell was that? Why did he give up?

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During that 1st six mos, I really did little more than sleep or watch, follow the guidance from the neuro & wallow

Until one day, I just decided I didn’t want to spend the next 30 yrs like this. That I wasn’t going to spend the next 30 yrs like this no matter what

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So, I did what ever red blooded American does, I turned to Google

And, DEAR LORD, I can’t even tell you about the level conflicting BS rampant everywhere regarding Lyme!

It was exhausting trying to sort it out

So, I decided to look up Dr Burascano

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Let me take this moment to introduce to the man, who didn’t even meet me & never treated me, but none the less, absolutely, 100% saved my life

Dr Joe Burascano (back in the day)

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At this time, Dr B had finally given up his practice in East Hampton because the AMA & the State of NY had gone after his license for the 3rd time FOR TREATING LYME DISEASE PATIENTS

He was in the middle of his own battle w/ cancer & it was finally too much

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But Dr B didn’t abandon the fight for Lyme/Tick Born illness patients

(more on Dr B now in a minute)

He gave the world…ok, my world… a huge gift

He wrote out his full protocol for treating Lyme disease & the asoc TBI’s in great detail & it was on the internet

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I printed it out & I read, re read & re read it - looking up what every single thing in it meant
(Did I mention that 1. my undergrad degree is a straight science - Biology Degree-Plant Taxonomy focusing on cryopreservation of endangered wetland seeds

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2. That I’m a great big old science geek that has always loved anything to do w/ virology (they’re deadly but gorgeous) & bacteriology?

Seriously, I watch my husband & my kid’s (except 1) eyes glaze over as soon as I get started talking about this crap 😂

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I spent probably 6 weeks going through that paper & everything associated with a fine toothed comb. My notes were 3x the size of the original paper.

I went to Dr Useless to feel him out 2x & ran straight into a brick wall (as I should have expected) when I tried to talk

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I had a relatively new relationship w/ the neurologist & I didn’t want to upset my 1 lifeline to anyone that believed me & was truly trying to help me

I also knew that nothing was really helping me. That I wasn’t sure that anything was ever going to help me

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By this time, after all the reading & studying I was doing that Lyme was involved in this

So I did two things:

1. I tracked down ALL (& I mean ALL) of my medical records from the age of 6 to the present & created a chronological binder

That took a while & it was

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Sheer luck that I found the son of the earliest pediatrician that I could remember (who treated me for Lyme back when I was 10) & he, unbelievably, had his dad’s files in his garage

He had & sent me the records he had on me

I still send him a Christmas bottle every year

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And 2) I made the decision that I wanted a life back. I knew I wasn’t getting my life back but I wanted some kind of life. I decided to figure out a way to follow Dr B’s protocol w/ or w/o medical supervision or help

I didn’t tell my husband or family

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I certainly didn’t tell Dr Useless & at the time, I didn’t tell the neuro (he absolutely knows now, he was the first person I told when I got a feeling if the results)

At that point, looking at the road ahead & where it was heading, I truly felt I had nothing to lose

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Remember, the other woman like me had just died, several other wholesalers & private client providers like myself were sick & dealing w/a plethora of debilitating symptoms

I had gone through a million diagnoses- MS, Fibromyalgia, Rheumatoid Arthritis, CFS, Lupus, Celiacs

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Restless leg, sleep apnea, hashimoto’s, you name it…..I supposedly had it at one time or another & one by one they were ruled out (except for a couple that have genetic markers & they resulted from all this)

My business was sold, I couldn’t work (I tried to go into

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field briefly but it was a disaster to say the least) … I was able to fulfill my obligation to act as a consultant at during the transition to make my clients confident in the new owner - who was chosen very carefully- I had the same clients for many, many years - I owed

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Then loyalty & continuity & I somehow managed to fulfill that for the 2 yrs I agreed to.

I still do consulting work for several of them to this day. Like I said, I was good at my job

When I wasn’t doing that, I was on my couch barely able to move or control my body

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I’m not trying to be vague in describing my actual symptoms - there were so many & were so unpredictable (and embarrassing sometimes) that sometimes it’s hard to remember it all

Maybe it’s also that it’s painful to remember just how bad it was: how much it hurt

I dunno.

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Anyway, I made the decision to one way or another get the medications recommended by Dr B’s protocol & to follow it precisely

And I did

I’m not gonna say how because what I did was actually very dangerous & times have changed.

There are doctors willing to help now

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I followed the protocol precisely for 6 weeks - even medication, every vitamin, every recommendation

And I saw great improvement

I documented that improvement through a daily detailed journal that I kept just in case anything happened so my family would know

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Exactly what I did & why. I did not want there to be any confusion. I took this risk. Anything that happened was on me.

To this day, I have that journal (along with a closet full of documents, paperwork, medical test results, research papers, etc all neatly organized

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For the way my mind works 😉

At the end of the first six weeks, I knew I was on to something & I could prove it.

I also knew I needed help because this wasn’t a take some pills, miraculously get better situation

I reached out to a retired local doctor here that

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Was involved in the original research, description & naming of Lyme Disease. A man that had hated how the it turned out & had been quietly treating locals appropriately for decades. A doctor that had to work hard to keep that on the down low because he saw what was

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Being done to Dr Burrascano in East Hampton for almost a decade

And, No, he is not the person who got the meds for me. I didn’t meet this Southampton Dr until after I had finished the protocol.

Trust me I wish with all my heart I had know about him!

🧵🧵🧵gotta take another break…family duty calls🧵🧵🧵