Discover and read the best of Twitter Threads about #LYME

Most recents (24)

Whether the brain is damaged from a hit to the head like w/ concussion or damaged from a viral or bacterial infection, the edema/inflammation can cause strikingly similar symptom presentation in many patients, eg sensory overload/intense focus causing nausea + vomiting #LongCOVID
From the beginning of the pandemic it’s something that has stood out from patient reports. High functioning people saying they can’t read. That sound, light, movement *hurts* them now. That they need to take cognitive breaks or very slow processing. #pwME #LongCOVID #PICS #Lyme
And I learned how poorly we actually care for patients after concussion. How very little we have to offer them from a medical perspective, especially those whose symptoms linger.

As we learn more about the various ways the brain can be damaged, I hope we find better ways to heal
Read 3 tweets
Lieber @Karl_Lauterbach!
Da Sie leider im #KaDeWe waren, - wo war eigentlich @starkwatzinger ? - 2 Min #MEcfs Realität & Politik!

#MEcfsImBundestag
#Auslöser Infektionen - Impfungen - Fluorchinolone - Unfälle uvm - Komorbiditäten #SmallFiber #POTS uvm
#WirfordernForschung 1/2
Weil einige Anfragen kamen:
das Video enthält Ausschnitte aus dem 3sat Kulturzeit Beitrag (Oktober 2022 über #MEcfs @KarenBreece Wien’s Anatomy), plus Ausschnitte Debatte #MEcfsImBundesTag
Hier der Link zum Beitrag (Autoren D.Schmidt-Langels/S. Dahrendorf)
und p.s.
Fotos sind von Silke Reents und @MariaWagnerBER
Danke.
Read 3 tweets
„Von Kopf bis Fuß von einem Tsunami erfasst“
#MEcfsimBundestag

Ich musste mich im Liegen ins Ausland karren lassen, um dort weitere spezielle Diagnostik zu erfahren. In Deutschland weiss man nicht, dass #MEcfs auch mit einer HalswirbelsäulenInstabilität zu tun haben kann. 1/x
In Kombination mit weiteren Triggern, wie jetzt bei #LongCovid, aber auch #EBV #Lyme oder gar #Malaria. Auch toxische Antibiotika gehören dazu, wie die #Fluorchinolone, (haben sehr viele genommen - leider) und ja auch Impfungen #PostVac . 2/x
„Später wird sie in einer Mail schreiben: „Jetzt nach so einem Telefonat: wegen der Belastungsintoleranz und POTS – Herzrasen bis unter die Decke, Luftnot, Zittern, Schwindel, Sehstörungen, irren Tinnitus, Muskelschwäche usw. Das ist das, was viele nicht verstehen, 3/x
Read 5 tweets
Heute mal wieder etwas zu #SmallFiber. #MedTwitter

Die #SmallFiber Neuropathie wird gerne übersehen, auch bei #MEcfs (hat auch keine Erwähnung in der neuen LL #Müdigkeit oder ich hab‘s dort wiederum übersehen) - hier ein guter Text und ein 🧵1/x

link.springer.com/article/10.100…
Viele #LongCovid #PostVac aber auch #Lyme Betroffene oder #Fluorchinolon Geschädigte leiden an den typischen Symptomen einer #SmallFiber Neuropathie – Symptome überschneiden sich oftmals mit #MCAS und/oder #POTS (dazu vielleicht mal ein gesonderter Thread)
2/x
#SmallFiber Neuropathie (SFN), typische Symptome. Zitat:
 
„Durch Schädigung sowohl somatischer als auch vegetativer Nervenfasern ist die klinische Präsentation der SFN vielgestaltig. Ein häufiges Symptom sind neuropathische Schmerzen, die oftmals als brennend, einschießend…
3/x
Read 10 tweets
In 2020 the #CDC told us: sure, they pushed #IDSA #lymeDisease guidelines for years but they won’t do anything to make up for that now & they don’t care about the chronic long #lyme cases they caused, acute cases will be their only focus &their test works. bit.ly/3ihM6eU
2. CDC makes a big deal of pre-test probability (that patient has #lymeDisease) suggesting their #lyme test would show many false positives if everyone was tested 4 Lyme. So that probability deemed likely after CDC’s told docs for 40 YEARS not to test unless in NE or have rash?
3. Minute 2:30- #CDC said they saw #lymeDisease cases (determined from insurance claims) were from the states they expect them to be. He thinks everyone is stupid. Duh, for 40 YEARS they’ve told #doctors not to test if patient isn’t in one of those states! bit.ly/3ihM6eU
Read 8 tweets
That’s exactly right.

It happened to me with #Lyme. I was one of the lucky ones who got the right diagnosis (after 5 months/ 12 docs!) & got better.

Many don’t. #LongCovid #ChronicLyme
I was super healthy. At the prime of my life & music career.

Got a tick bite (likely, in my sleep!) at a wedding in NJ.

Initial flu-like illness lasted 2-3 days. Then I saw rash on shoulder around a tiny bite.

Went to urgent care & they Rx’ed 3 weeks antibiotics.
I was told I caught the Lyme infection early so not to worry.

I took the antibiotics and felt ok. This was in July. Went on with my life.

Woke up one morn in Oct. & all Hell broke loose. Swollen breast, severe pain, severe arm weakness, severe insomnia/ anxiety/ ahnedonia.
Read 11 tweets
Me: I am concerned abt all the sudden deaths we’re seeing.

Many Replies: WHAT R U SAYING?? IT’S THE VIRUS, NOT VAX!!

Me: Huh? I didn’t say it was the vax.

Many replies: IT’S THE VAX, LIAR!!
Please, can we stop reflexively reacting and take a step back?

We are not getting anywhere.

I hate seeing so much division, esp knowing much is being created by gov/ corporations/ complicit media who are expert at manipulating the public.

I pray for ☮️ & ceasefires in 2023.
It has done incredible harm for people (esp MD/scientists) to deny others real experiences. Whether that is losing loved ones to or becoming disabled by the virus, or harmed by vaccine.

It is soul-crushing to see how ppl are being treated & vehemently denied truth.
Read 6 tweets
This is a fantastic thread on the benefits of #Nattokinase, which is reportedly helping a lot of #LongCovid patients.

I’ve been hearing abt it for years within #Lyme community but never did a deep dive until recently.
“Nattokinase keeps blood optimally flowing & promotes cardiovascular health. According to research, it can lower blood pressure, help reduce risk of atherosclerosis, help lower lipids, support optimal blood flow with its anticoagulant properties, & may even be neuroprotective.”
“Nattokinase works its cardioprotective magic by its unique ability to dissolve fibrin, a protein that helps our body form clots. As we age, we can experience an increase in blood viscosity or thickness.”

nbihealth.com/top-reasons-to…
Read 7 tweets
🗳Given the multitude of 🦠 pathogens that cause behavioral changes (even mental illness), including #rabies, #Lyme, #toxoplasmosis, #Trypanosoma, etc, I am curious how many are noticing behavioral changes with Covid.

What do you observe?
“Join us as we share tales of some of the creepiest parasites around — those that control the brains of their human hosts, sometimes leaving insanity and death in their wake. These are the tales of neurological parasites.”

discovermagazine.com/planet-earth/m…
The many strains of Wolbachia can do amazing things to their insect hosts: change their sex, kill their offspring, and poss even create new species. And, in the process, they might just provide enough benefits for their hosts to make it all worthwhile. arstechnica.com/science/2011/1…
Read 6 tweets
What evidence have we got for vaccine induced #longcovid like presentations?

A thread 🧵 (focused on human evidence rather than theoretical or mechanistic)

#PostVac #teamclots #vaccineinjuries
I will start by saying the *published* evidence is limited. Therefore going off published evidence alone is (by definition) incomplete (same for any research: the active researchers have a knowledge advantage)
1. This was first reported in the mainstream in Jan 2022 by Science mag:
science.org/content/articl…
Importantly, there are a handful of such cases in the trials that were excluded from final analysis, one is described in the Science article
Read 28 tweets
POLLS! #LC #MECFS #LYME #FIBROMYALGIA #MOLD

I'm analyzing some surveys. Could you please help clarify a result?

For those w/ #LONGCOVID, have VAGAL NERVE STIMULATORS helped your symptoms?

Ex: MedFit, Dolphin, Sensate

#MECFS #fibromyalgia #Lyme #MOLD: see SEPARATE polls below
For those with #MECFS, how have VAGAL NERVE STIMULATORS (examples: dolphin, MedFit, Sensate) helped your symptoms?

For #Lyme #Mold & #fibromyalgia, please see next two tweets.
For those with #LymeDisease or #mold exposure, how have VAGAL NERVE STIMULATORS (ex: Dolphin, MedFit, Sensate) helped your symptoms?

For #Fibromyalgia, please answer poll in NEXT tweet.
Read 6 tweets
1/ I'm approaching my 2 year anniversary of #LongCovid . I thought I would share my journey to recovery. This is not medical advice, just my story. If it helps one person it's worth it. I learned more from Twitter than anywhere else on this journey. #microclots #teamclots #pots
2/ I got COVID November 2020. Night 1 I had the most excruciating headache of my life. It felt as if someone was drilling into my forehead.  The headache dissipated after 2 days only to return day 13.  Initially I had some minor brain fog, like putting Ice Cream in the fridge etc
3/ I never lost my sense of taste or smell. I had a minor fever/body aches for 24 hours. Day 4, I started having heart rate issues. I would be resting on the couch and get up to walk to the bathroom and my heart rate would jump to 130.
Read 26 tweets
At an event I did last night, someone asked me to recommend poems of illness, and my mind totally blanked. But of course names popped in my head all day today. A little 🧵 of illness poems I love:
(thinking of #Lyme #MECFS, #longcovid #dysautonomia, #autoimmunedisease, and more)
An incredible poem about headaches by Emily Dickinson that I bet some #longcovid and #migraine sufferers could connect to. I mean, these lines:

"And then a Plank in Reason, broke,
And I dropped down, and down -"

poetryfoundation.org/poems/45706/i-…
The one that says it *all* about community and connection - John Donne from DEVOTIONS ON EMERGENT OCCASIONS:

No man is an island entire of itself; every man
is a piece of the continent, a part of the main....

any man's death diminishes me,
because I am involved in mankind.
Read 15 tweets
The thing that bugs me most (no pun intended) about #LymeDisease is that people accept the claim it’s “controversial” without question. If people were getting properly diagnosed there would be no controversy—so the question should be, who is preventing proper diagnosis??
Who is preventing proper diagnosis of #LymeDisease?

1. @CDCgov, in many ways, but mainly by insisting on test methods that they, themselves have said are inaccurate. They also control the serum repository, ensuring it skews toward the highly reactive arthritis subset.
Who is preventing proper diagnosis of #LymeDisease?

2. The same people who created the diagnostic standard, who also profit from the bad tests, who also control the narrative by claiming #Lyme diagnosis is “controversial.”
Read 13 tweets
#1. The Feds on the #TBDWG have controlled every recommendation & every sentence of the Report to Congress for 6 years. This #FAC was THE chance for #lyme truth to be disclosed after 40 YEARS but the Feds’ role was to keep the false controversy going. 2/
#TBDWG & other efforts that R actually controlled by the Feds like #lymeX (it IS #HHS,not a non-profit) recommend new #lyme efforts but it’s recommended all those efforts be controlled by the very agencies (& In Turn individuals) that reversed #lymeDisease facts & made test fail.
#lymeDisease medicine will NOT be allowed to progress until the corrupt & FALSE #lyme controversy is exposed. It was known in the 1980s & 90s that lyme was a serious & disabling illness that causes neurological, immune & neuroimmune illness & an antibody test=false negatives. 4/
Read 14 tweets
🚨 Did you know common infections can cause severe mental illness that’s mostly overlooked by MDs?

@krisnewby wrote abt stunning case of healthy teen dx’d w schizophrenia after bug bites transmitted #Bartonella.

He was committed to psych ward...

nowthisnews.com/swamp-boy
He failed all major psych drugs & only got worse.

His dad had hunch that docs were missing something important & began reviewing literature.

He presented MDs w his findings of infection-mediated illness #PANS.

MDs wrongly dismissed him, insisted it was psychiatric.
Dad was right.

His research led him to the work of brilliant Dr Ed Breitschwerdt from @NCStateVetMed , 🌍 leading expert on bartonella, who I interviewed last week (will post link).

He contacted Dr B whose lab found bartonella in his blood.
Read 9 tweets
POLL on nattokinase & LK to compare to my longer survey results in hopes of reaching more of you💛Please note🧵of *3 separate polls* for 3 populations: Poll 1 for #pwLC, Poll 2 for #pwME, & Poll 3 for #Lyme.

How has nattokinase or lumbrokinase helped your #LongCovid symptoms?
PIE CHARTS from Nattokinase/LK Polls

Much larger sample sizes (~2x) than previous NK/LK survey:

Long Covid: 303
ME/CFS: 81
Lyme: 16

Due to constraints of Twitter poll, I had to clump No change & worse together. To get a better sense of what % felt worse, see survey results🧵 ImageImageImage
These results are consistent w/ my surveys, though a bit lower efficacy. This was expected as those with greater illness severity can take quick polls more easily than my longer surveys.

LC (n=303): 66% benefitted
Lyme (n=16): 62.5% benefitted
ME (n=81): Lowest @ 58% benefit
👇
Read 4 tweets
Update
Het is alweer even geleden dat ik wat deelde over #microclots, de H.E.L.P. Apheresis behandelingen in Mülheim en bijbehorende medicatie.
Om maar met het belangrijkste te beginnen: het gaat beter met Peter.
#ME #LongCovid
1/14
Belangrijk voor je verder leest: ik ben niet medisch geschoold, ik promoot geen medicijnen of behandelingen maar deel alleen mijn eigen ervaringen. Maar voor patiënten met #ME #MEcvs #LongCovid #Qkoorts #Lyme en vergelijkbare ziektes is het misschien interessant.
2/14
Ik heb moderate/severe ME, diagnose van voor corona. 2x gevaccineerd, 2x booster. Na de 1e booster ben ik flink verslechterd, dat kan ook toeval zijn, mijn symptomen wisselden nogal. Half mei zijn door dr Jeager in Mülheim microclots en endotheel schade bij mij aangetoond.
3/14
Read 14 tweets
Êtes vous prêts à vous soumettre à une petite expérience de pensée ?🔬

Vous êtes dans la peau d'un volontaire qui participe à une étude épidémiologique sur un nouveau virus 🦠 qui frappe la planète entière.

🔽🔽🔽
Vous recevez un kit pour déposer quelques gouttes de sang 🩸🩸sur papier buvard, que vous envoyez à un laboratoire.
Celui-ci va réaliser un test "sérologique" ELISA qui recherche la présence d'anticorps contre ce nouveau virus🦠,pour savoir si vous l’avez déjà rencontré.
🔽 Image
On vous informe sur la fiabilité du test : c’est certain si c’est négatif, mais il peut se tromper lorsque c’est positif.
Dans ce cas, un second test – décrit comme "fiable à 100%" – dit de "séroneutralisation" est utilisé pour savoir si vous avez bien été infecté ou non.
🔽 Image
Read 24 tweets
"This is something the ivory tower medical profession needs to realize — #LongCovid is going to push us outside our comfort zone w/ illnesses we can’t define. Because we don’t like when we can’t understand something but we have to get over that" @WesElyMD statnews.com/2022/10/10/a-d…
"With long #Lyme, #MECFS.. I was taught in med school they weren’t real..I used to think those weren’t real. I was just with some med students last week, & I talked to them about long Lyme. And they said we were taught that that’s not real — and these are current med students."
The first thing I say to my fellow #MedTwitter is we’re busy.. I get that.. for #LongCovid, there’s no treatment yet, but you can say to them, “I’ll stick with you as we learn more in the months and years ahead and we’ll figure this out together.” - @WesElyMD
Read 8 tweets
Ook in ben #ziekBOOS Ruim 2,5 jaar ziek door #LongCovid en een groot gedeelte van deze tijd ben ik ook al boos. Boos omdat ik niet geloofd werd toen ik ziek bleef. Boos omdat ik over mijn grenzen gejaagd werd door artsen en hulpverleners waardoor ik nog zieker werd. Boos omdat er
geen kennis bleek te zijn over dit ziektebeeld en mijn ernstige en invaliderende symptomen niet herkend werden. Ik ben boos omdat ik in consulten met artsen en paramedici op zoveel weerstand stuitte. Ik ben boos omdat men vol vooroordelen zat en niet openstond voor nieuwe kennis. Image
Ik werd nog bozer toen ik erachter kwam dat #LongCovid niets nieuws is, niet onbekend en mysterieus zoals men het graag doet lijken… post infectieuze aandoeningen bestaan al eeuwen. Denk aan #pwME #Lyme #Qkoorts en allerlei vormen van #dysautonomie zoals #POTS
Read 33 tweets
I don’t enjoy spending precious time calling out specific people for spreading misinfo if they’re not leading PH / gov response to policy.

But ya know, it’s extremely disturbing that some rando MPH now fancies himself an expert on #Lyme & #LongCovid & mocks them.
And when I asked him not to spread misinfo, & sent an article on the topic by top @DukeMedSchool oncologist @neil_spector who ran a lab studying Lyme & cancer at Duke, he blocked me from commenting & said he didn’t care what Dr. Spector said.

THIS IS UNACCEPTABLE BEHAVIOR.
The #LongCovid & #Lyme & #MECFS communities deserve MUCH BETTER than this.

He is one of many ignorant, foolish, dogmatic, uneducable chumps who deserves no seat at the public health table.

Smart (PH) ppl are curious and learned.

THEY AREN’T LIKE HIM. Enough.
Read 4 tweets
I think ppl underestimate the role of reactivated #Lyme & Bartonella in #LongCovid (many dont know they have either). Lots of focus on #EBV may be missing this. When I interviewed @microbeminded2 recently (released soon) she said, “first things to rule out w LC are Lyme/ bart.”
There is a study published in @Nature that speaks to this here: nature.com/articles/s4159…
Lyme and bartonella are common, hugely misunderstood and under-recognized, can lie dormant, patients often asymptomatic, and like Covid, can be persistent.

When they get activated, all Hell can break loose.
Read 5 tweets
Samuel Shor, MD - Treating Lyme & Chronic Lyme
ILADS defines #chronicLymedisease (CLD) as a multisystem illness with a wide range of symptoms and/or signs that are either continuously or intermittently present for a minimum of six months #ILADS2022
2/Shor:
Only 18% of 1770 children with #Lyme disease
remember being bitten
Nigrovic LE, et al A minority of children diagnosed with Lyme disease recall a preceding tick bite 2019, Vol.10(3), p.694 #ILADS2022
3/Shor: The CDC acknowledges that its #Lyme case definition was developed for surveillance purposes. It is NOT to be used as an absolute criteria for clinical diagnosis. #ILADS2022
Read 4 tweets

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