Thread by @danaparish

My biggest lesson after almost losing my life to #Lyme ❤️ failure after 12 dogmatic NYC docs failed to recognize what was wrong, gaslighted me, & implied my serious symptoms were in my head…

NO ONE WILL DECIDE MY FATE.

I was bitten by a tick in my sleep in LBI, NJ, July 4th weekend 2014, there for friend’s wedding.

Came back to nyc, woke up w crushing head/ neck ache. Little did I know “summer flu” is usually #Lyme.

Few days later, was feeling a bit better but saw bite & rash on shoulder.

Walked to urgent care. They said it was #Lyme, told me not to google it 😑, & that with 3 weeks of doxycycline, I would be 💯 fine.

My gut feeling said something was very wrong. But I wanted to believe.

I followed up w an @IDSAInfo doc from NYU to be sure.

He said I was given more than enough antibiotics (“I would’ve only given you 10 days”) and to not worry abt it.

I finished doxy. Felt “ok,” but fatigued.

I went to @CDCgov website which said it’s common to have “post-Lyme” symptoms for a few months.

I wanted to believe.

I went on w my life. Had just written 2 songs for upcoming @celinedion record & was abt to sign an amazing deal w @SonyMusicPub.

I was at the prime of my life.

I did not want to be sick.

Nevertheless, I woke up w a swollen breast in Oct, my internist sent me to oncologist.

Here we are. I didn’t know what was about to hit me.

The oncologist said it was weird but not cancer. He had no clue what was wrong but made illogical hypotheses. (“Too much soy,” “hormones”— I don’t eat soy, too young for “hormones.”)

I asked if it could be from the tick bite and he said no.

I wanted to believe.

Within weeks, my arms stopped working. I was too weak to lift a fork. And my body ached all over for no reason.

I also had new onset of crushing anxiety, insomnia, depression, OCD. I had never had psych symptoms before. Never been weak. This was terrifying.

My internist had known me for at least 12 years. She was alarmed by what was happening but didn’t know what was wrong.

I went from vibrant & productive to homebound-shell-of-former-self within a matter of months.

I was diagnosed w #Fibromyalgia & stress 🤦🏻‍♀️ by another ID doc.

I asked if this could all be from #Lyme, from the tick bite.

He said no.

I did NOT believe.

I asked why. He said, “because I went to medical school 🤯. And Lyme is killed 💯 in the test tube.”

Well, that second part was simply NOT TRUE! But I didn’t know that yet.

I was spiraling badly by now in all ways.

There were burning red rashes across my chest & streaks down my arms, I had brain fog & confusion so bad that I could not go out without getting lost & needing someone to come get me. A block from home. I was afraid to be alone at all.

I felt something had invaded my brain & body. I could feel it.

I was passed from MD to MD, kept asking WHY. I kept insisting they consider the tick bite & kept being told NO.

I asked ID doc to test my inflammatory markers. He said, “Oh, good idea.” 🤦🏻‍♀️

One came back high.

I now need to point out that ticks spread MANY infections, and often transmit more than one per bite.

SOMEHOW, sick as I clearly was, NONE of the @IDSAInfo docs ever considered this (!!) and none tested me for any infections!!! They just kept saying, “can’t be #lyme.”

I did not know Lyme was controversial. I didn’t know there was a massive coverup around the fact that it can be chronic 💡 so insurance companies could get out of paying for treatment after a month.

I had no clue why all these docs acted SO bizarrely when I asked abt the bite!

So, as I got sicker, their denials got louder. Their suggestions that I was “stressed” and needed “some time off” enraged me.

I would not back down that I was fine before the bite. They would not back down that my Lyme was cured. I demanded answers. They provided suffering.

Now we are in December, I suddenly can’t breathe. My internist saw me & walked me to cardiology for an echocardiogram.

I was lying there gasping for air. The tech paged my doc to come back and hold my hand.

I was now in ❤️ failure. And told my ❤️ was like a 70-yr-old man’s.

I was stunned & devastated. Didn’t know how I was going to tell my family I was going to die.

And I def believed I may die, bc even though the doctors all now BELIEVED I was “truly” sick, they didn’t have ANY IDEA WHY & therefore offered me no appropriate treatment.

I googled all of my symptoms. Finally.

What came up was a Lyme checklist. I had 38 of 60 symptoms.

I was simultaneously flooded with rage & relief.

I vowed that if I got well, I would tell my story to anyone who’d listen. But first, I had to find “the” doctor.

My friends in New England told me that the only doc I shld see was @StevePhillipsMD, that he was brilliant & his testimonies changed laws all over New England so patients could get treated properly for chronic Lyme.

I got in on a cancellation a few weeks later.

He instantly put me at ease. He was not only brilliant, he believed me. He was able to EXPLAIN what was happening in my body, and educated me abt the Lyme landscape.

And importantly, he tested me for many other vector-borne infections.

Lo & behold, I had another. #Bartonella

I began treatment with a rotating course of antibiotics & antimicrobials.

I also did a Chinese Med protocol rec to me by @DrWeil called Zhang protocol.

My symptoms got worse at first (normal, herxheimer reaction), but calmed down soon after.

My ❤️ failure resolved w/in 8 wks.

@StevePhillipsMD spoke to my cardiologist fr @MountSinaiNYC & educated him abt all the bad things #Lyme & Bartonella can do to the ❤️.

He was receptive & amazed. And gracious. Said he will now add infection to the differential. @adribaran

Long story short 😂…

I’m in fortunate category of chronic Lyme+ patients who actually got diagnosed, treated, & recovered.

I was fully in the music business before this, had been singing & writing since I was little. But I could not sit idly by knowing others were suffering.

I knew patients were suffering Bc they were being gaslighted and lied to by the doctors who were supposed to heal them. Or, at least, believe them!

Not to be believed when I was 💯 telling the truth was INSANE!

And as you can see, HELL HATH NO FURY LIKE A PATIENT SCORNED!

I had a friend who introduced me to editor at HuffPo. He said I should write my story.

My story turned into a column that was read by well over a million people. I was getting letters from all over the world now, the same crushing stories, over & over. huffpost.com/author/thedana…

Soon after, I met @LewsView from @fox5ny. He had been reading my column & asked @StevePhillipsMD and I to do an interview for a special they were producing. (Thank you, Lew!)

The special won an Emmy 🏆 for best science show. Here is our full interview.

. @StevePhillipsMD and I were now doing lots of press together, raising awareness abt the Lyme pandemic (and it IS a true pandemic) & how underlying CHRONIC infections like Lyme cause SO MUCH “autoimmune” & psych disease. From MS, RA, fibro, to anxiety/ depression/ insomnia Etc

We were now being contacted by MDs from fancy institutions like @harvardmed who looked into the chronic Lyme controversy after seeing one of our interviews and were STUNNED to discover they were completely misled.

We have educated A LOT of doctors! But, sadly, not enough.

Which leads me to the final chapter. Our book, CHRONIC.

After having been told by a dozen docs that there was “no such thing” as chronic Lyme, well, we had a serious bidding war for our book abt it. (Cc @IDSAInfo - ya’ll shld read it!)

Here is a link in case you are so inclined.

Chronic: The Hidden Cause of the Autoimmune Epidemic and How to Get Healthy Again amazon.com/dp/0358561906/…

There’s more to tell but for now, that is my story. Shared one more time. In hopes it will reach someone in need.

Everything I went through applies to #LongCovid in SO MANY WAYS.

So, pls. Don’t let anyone tell you you can’t get better. Follow ur gut. It will lead the way 🌟

For more info on Lyme+, Longcovid, and their role in chronic disease, pls visit our website. There are many interviews there.

TheChronicBook.com