Discover and read the best of Twitter Threads about #lyme

Most recents (24)

In dem Moment, wo ich ein paar persönliche Worte über meine Erfahrung mit der #Psychosomatik schreiben will, schneit @julimaelle’ s lesenswerter Thread in meine Timeline rein. ⬇️
Ich ‚breche‘ das mal (wieder) runter auf meine Erfahrungen - die - sage ich gleich - nicht katastrophaler sein könnten - meine Begegnungen mit der #Psychosomatik.

Als mein Körper vor vielen Jahren erste Symptome ausspuckte, die partout nicht weggehen wollten - war man sich
nach einem 5 Minuten Gespräch (Arztpraxis) schon sicher:

Das muss eine Depression sein.

Das wurde nicht nur mir NICHT gerecht, sondern wird auch jenen nicht gerecht, die ‚wirklich‘ an Depressionen leiden - denn das ist ebenfalls eine schlimme Erkrankung.
Read 19 tweets
#SmallFiber #Vorkommen #Anamnese #Symptome

„Die klinische Symptomatik der natriumkanalassoziierten Small-Fiber-Neuropathie kann je nach zugrunde liegender Mutation stark variieren und sich in Form von neuropathischen Schmerzen, aber auch…
einer schweren autonomen Dysfunktion manifestieren.

Insgesamt sollten insbesondere neu beschriebene Mutationen aber immer im Kontext mit der klinischen Symptomatik bewertet werden.“

#MEcfs Betroffene klagen oft über #SmallFiber Symptome. Selten wird das richtig abgeklärt.
Auch #LongCovid Betroffene #PostVac und vor allem auch #FQToxicity Betroffene weisen oftmals eine #SmallFiber Neuropathie auf. Auch #Lyme also #Borreliose Betroffene gehören dazu. (Hier mit auf der Liste).

Read 15 tweets
„What Are The Symptoms? #MCAS has been associated with a range of symptoms including: hives, psoriasis, asthma, fainting, low blood pressure, fast pulse, anxiety, brain fog,exhaustion, anger, red face flushing, irritable bowel syndrome, gastritis, reflux, diarrhoea, bloating, 1/4
itchiness, sore throat, hoarseness, arthritis and more. (…)

1. Rapid onset (within minutes to hours) of symptoms involving the skin or mucosal tissue (skin lining the body cavities e.g. inside the mouth and nose) for example, swollen lips or tongue
2. Breathing difficulties
3. Reduced blood pressure, collapsing, incontinence (lack of bladder control)
4. Persistent gastrointestinal symptoms such as cramps, abdominal pain or vomiting
Mast Cell disease is more prevalent in neurodivergent people. It also cooccurs with Ehler’s Danlos Syndrome and …
Read 4 tweets
#MEcfs Habe gerade meine Stellungnahme ans #IQWIG geschickt. Er enthält neben der Hervorhebung, dass dringend diese Aktivierungstherapien vom Tisch müssen, einen Haufen Studien - reichlich Bilder und vor allem die Einbeziehung u.a folgender überlappender Erkrankungen:
1/3 Image
#MCAS #SmallFiber #PoTS #MCAS #CranioCervikaleInstabilität #EDS #FluorchinolonVergiftung #PostVac #Lyme #LongCovid #LongSomething

Auch sind Zitate angefügt, u.a von Ed Yong über Akiko Iwasaki, Carmen Scheibenbogen bis hin zu Torsten Harmsen.
Gut, dass es diesen Artikel gibt.
Und den aktuellen Artikel aus der Zeit über #FQToxicity habe ich ebenfalls noch angefügt. War mir ein Anliegen auch die Frage zu stellen, wieviele #MEcfs Betroffene eigentlich #Fluorchinolon vergiftet sind!?

Wird wahrscheinlich eh alles nicht berücksichtigt.
Read 4 tweets

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
#1 I am a very private person who dislikes social media, but I have finally decided to use my voice to raise awareness of long covid and other post infectious diseases that don’t get enough attention. Here’s my story. #ZiekBOOS I got infected with #covid19 in june 2022.
#2 It started like a bad flu, I wasn’t hospitalized. 2 weeks later I woke up with extreme fatigue, headache, dizziness, heavy legs and pressure against my chest. I was barely able to walk for 5 min. Then I lost my sense of smell&taste. I understood that I might have long covid.
#3 3 weeks after my infection I consulted a GP. The GP sent me home with the message that there’s nothing they could do and advised me to take vitamin C supplements. I just had to wait it out for a couple of ‘months or years’.
Read 20 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 -"…
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
🌟Lettre à ma mère ✝️💕

Ma petite Mam,
En ce jour des défunts, puisque je ne peux plus plus te parler, je voulais t’écrire..
T’écrire pour te raconter : j’ai été voir, le 6 sept , celui qui t’a injectée contre ton gré ; toi qui n’étais un danger pour personne.
Accroche toi…
C’était un mardi après-midi, il recevait sur RV, mais la salle d’attente était vide : je l’ai donc attendu, dictaphone en marche dans mon sac.
Il m’a reçue poliment, je me suis présentée: «  ah, oui, je suis désolé » m’a t il dit..
« Pourquoi venez vous ? »
Je lui ai répondu que je ne venais pas polémiquer, mais juste récupérer le numéro de lot du 💉 AZ qu’il t’avait injecté.
Parce que, ayant récupéré ton compte rendu d’hospi, il n’était fait mention nulle part ni de ce 💉, ni de lui comme étant ton médecin traitant 😳
Read 19 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
I used to go to the café on a Saturday lunchtime, that’s it or was it, or meet with friends in the autumn sun. Today - severely ill, ignored by the health system, - it's all about #Twitter yes or no, moving, yes or no #Mestadon (always sounds like Mestinon…)
… today just stuff like that. What would I give to just sit in a cafe without internet, talking to people!

And my old Instagram account is not restored yet, a lot of money spent for nothing. So, I'll stick with the new Instagram account, that’s: @ sibylle_on_the_other_side
I’d appreciate if you can follow me there, on the new one! Please block & unfollow the old one, name was changed by the hacker into @ sIbylleontoture - original: @ sibylleontorture…remains now like a museum where paintings were stolen (some posts gone) & you can’t get in.
Read 5 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...
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
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
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.
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.
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…
"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.

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.

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:…
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
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
Joseph Burrascano, MD - Diagnostic Tools
#Lyme Clinical Presentation: nonspecific, viral-like symptoms that persist, & new ones appear. Then symptoms more focused on musculoskeletal, peripheral and central nervous systems, heart and skin. Muti-systemic & migratory. #ILADS2022 Image
2/Burrascano: Sorting out the co-infections #NotJustLyme #Bartonella #Babesia #Ehrlichia #Anaplasma #Mycoplasma #ILADS2022 ImageImageImageImage
3/Burrascano: Types of tests
SEROLOGIES are indirect, B-cell based tests:
B-cells create antibodies and serologies measure these antibodies #ILADS2022
Read 19 tweets
Robert Bransfield, MD: Thousands of peer-reviewed journal articles demonstrate the causal association between infections and #mentalillness 400+ peer reviewed scientific articles demonstrate the causal association between tick-borne disease and mental illness. #ILADS2022 #Lyme
2/Bransfield: Up to 40% of patients w/ #Lyme develop peripheral or central nervous system involvement. Psychiatric reactions include: #paranoia #dementia #schizophrenia #bipolar #panicattacks #depression #anorexianervosa, and #ODC #ILADS2022
3/Bransfield: Lyme is over represented in psychiatric patients. #ILADS2022
Read 15 tweets
Joseph Burrascano, Jr. MD: Ticks are "Nature’s Dirty Needle." In addition to #Lyme, ticks may be infected with #Babesia #Bartonella #Ehrlichia #Anaplasma #Chlamydia #Mycoplasma #WestNileVirus #Nematodes #candida and viruses. #ILADS2022
2/Burrascano: B. microti and B. duncani (also known as WA-1) are the predominant cause of Babesiosis in the United States #Babesiosis has been detected in all 50 states #ILADS2022
3/Burrascano: #Babesia odocoilei has been found in ticks across N America, but not human samples, perhaps due to defective primers. Immunoblot data shows significant % of Babesia species in human patients are not microti or duncani. Could be divergens and/or odocoilei? #ILADS2022
Read 8 tweets
#SmallFiber 🧵

SmallFiber Neuropathie: eine häufige #Komorbidität von #MEcfs. Oder ist sie gar Haupterkrankung? Eine Frage, die ich mir oft stelle. Bei mir wurde 2017 der Verdacht auf #SmallFiber gestellt. Aber auch hier wieder mit Depression total falsch weggeschmettert.

Erst durch #LongCovid Betroffene habe ich verstanden, dass ich auch davon betroffen bin. Auch #PostVac Betroffene berichten von Nervenschmerzen bis hin zu Brennen, Muskelzuckungen u.v.m Auch bei #Lyme kommt #SmallFiber vor und bei #FQToxicity, Vergiftung durch #Fluorchinolone
2/x Image
Cort Johnson hat einige empfehlenswerte Artikel über #SmallFiber

„•Pain – damaged small nerve fibers that transmit pain sensations could be producing the pain sensitization seen in FM.
•Gut Issues – damaged small nerve fibers in the gut could be
Read 14 tweets

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