Discover and read the best of Twitter Threads about #Lyme

Most recents (24)

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
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.

1/x
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
3/x
healthrising.org/blog/2020/07/0…
Read 14 tweets
A l'heure où la #covid19 met de nouveau sur le devant de la scène les #SFPI #SFPV (syndromes de fatigue post infectieux/viraux) cette conférence de Didier Fassin sur les conflits épistémiques en santé publique donnée le 12/04/5/2021 au @cdf1530 mérite
1/ radiofrance.fr/franceculture/…
d'être entendue
🔸tant par les malades #covidlong souffrant le - de brouillard cérébral
🔸que par les associations qui les représentent & notamment @apresj20
🔸mais aussi par les personnes en responsabilités @FrcsBraun @Elisabeth_Borne @EmmanuelMacron @olivierveran (#quisait)
2/
Read 10 tweets
It took me about 5 years to get the #MEcfs diagnosis (Berlin Charité). Nobody accepted it. Doctors didn’t and don't want to know that.

I searched further: #Lyme disease and co-infections findings, first ignored, then not accepted. #Herpes reactivations, not accepted.

1/4
Everything has nothing to do with the devastating symptoms and decline of the body.

I was taken abroad: cranio-cervical instability #CCI, official finding, before not recognized, then has nothing to do with my condition.

I found a lab that confirmed #FQToxicity #DNADamage

2/4
and #MitochondrialDamage. Mito-dysfunction double checked in another lab. Has nothing to do with my condition, say 'medical' professionals. Not accepted.

I have autoantibodies, 3 times proven: not accepted. And some more findings, like everything else completely ignored.

3/4
Read 4 tweets
"The Lyme disease bacteria—Borrelia burgdorferi—is definitely one of the smartest bacteria on the planet.⁠ The spirochete is a spiral shaped organism. And because of its spiral shape, and the fact that it has many tales, called flagella... A pink squiggly bacteria (s...
...this organism knows how to move through the tissues. It can disseminate throughout the body and into your central nervous system.⁠
So we know what syphilis can do to the body—which is a spirochetal infection. And the problem is, Lyme is the great imitator, just like syphilis was.⁠

The most common misdiagnoses that I see in my practice are people who have been diagnosed with chronic fatigue syndrome...⁠
Read 9 tweets
Minister of Health in Germany always tweets about #LongCovid, but never about #MEcfs or even #Lyme.

In year 3, they absolutely want to make a new disease out of #LongCovid, even where there is clearly #MEcfs - classified by the WHO in 1969!!! 1/3
Not good if you want to understand and research these diseases and help people. But do they really want to help those who are suffering? They do everything for not saying that they have forgotten and ignored one or more multi-systemic diseases for decades. 2/3
Everything was there before. Also the #PostVacSyndrome #PoTS #SmallFiber #MCAS 3/3
Read 3 tweets
Hatte mir vorgenommen, nichts mehr dazu zu schreiben. Ein letztes mal was zu #NeuroEssen. Denn ich vertrage das nicht. Warum? Weil: Als ich krank wurde und mein Körper begann auseinander zu fallen, bin ich nur auf unwissende und arrogante Zeitgenossen gestossen.

1/x
Beim Endokrinologen: Ich: kann nicht mehr laufen, Er: Ach quatsch, natürlich können Sie laufen...wenn jetzt Feuer ausbrechen würde, dann wären Sie schnell raus hier.
Damalige HÄ: Ach quatsch … (eigentlicher Text: ich habe keine Ahnung, will das aber nicht sagen)

2/x
Ärztin in einer Klinik: alles psychosomatisch. Neurologin: Verdacht auf #SmallFiber als Depression eingestuft. Nächste Ärztin/Psychologin: Ach quatsch, das ist keine Depression, das ist eine posttraumatische Belastungsstörung. Usw. Usw.

3/x
Read 13 tweets
One thing HIV, COVID, & Lyme have in common?

Latency. A period when you (generally) recover from flu-like initial illness & feel ok.

Weeks, to months, to years later is when problems often begin.

Ppl don’t seem to be aware of this & it’s THE MOST IMPORTANT THING to know.
If you take nothing away from anything I’ve ever said, please get this ^.

The virus is not as deadly upfront. It has a long, terrible tail (and tale) though.

Again, initial infection? Not much my concern. Knowing Covid migrates all over the body & can be chronic? HARD PASS.
My friend Dr. @FreitasABR has done a great service by collecting the (now ~300!!) studies on Covid persistence/ reactivation & is constantly updating this document.

Don’t take my word for it. Check out copious & devastating data to understand why some of us want to protect u:
Read 6 tweets
1/ THREAD: Solving complex problems requires passion, expertise, collaboration & diversity of perspective.

#TalGroup is THRILLED to officially launch the @MIT MAESTRO Study researching participants with #Lyme disease & #LongCOVID! 🧵
 
Study website:
talresearchgroup.org/mitmaestro
2/ We are URGENTLY recruiting acute #Lyme participants as we near the tail end of tick season in MA!

If you/someone you know has been bitten by a tick & has a new expanding rash please send our way!

After starting antibiotics there is a NARROW window that we can detect Borrelia Screenshot of MIT MAESTRO S...
3/ We are SO EXCITED to collaborate with leading industry & academic partners to help define novel biomarkers of #Lyme disease & #LongCOVID and advance understanding of infection triggered chronic illnesses!

H/T technology from @righteye @KariuS @BrainCheck @nextgenjane RightEye logoKarius logoBrainCheck logoNextGen Jane logo
Read 17 tweets
Of all the hate and trolling I catch on here because of #LongCovid, I tend to be able to chuckle, shake my head and paraphrase @BreneBrown with an Aussie “accent”, you know? Something like “if you’re not here in the arena with me then maybe just shut the f*ck up”. But the one 1/
that just befuddles me the most is this group of clowns claiming that we’re selling a false narrative of #longCovid because we have something to gain from “selling” LC. Let me be clear: prior to the pandemic, my life and career were doing just great. In fact other than meeting 2/
some total badasses like @VirusesImmunity, @doctorasadkhan, @resiapretorius, @microbeminded2, @meghanor, @ahandvanish, @ItsAngInLA, @hmkyal, @fi_lowenstein, @AlisonSbrana and way too many others to name, there has been nothing but personal and professional sacrifice to take on 3/
Read 6 tweets
📣Important new #LongCovid study finds low cortisol & persistent infection (reservoir of Covid &/ or reactivated OTHER infections like EBV) may be driving symptoms.

Thank you, @PutrinoLab @VirusesImmunity @EricTopol for shining light on this global pandemic of chronic illness! Image
Please look for other stealth, chronic pathogens like #Lyme and #bartonella, which also seem to be reactivating in face of Covid and causing patients to relapse. Re-treating TBDs has brought relief to some LC pts!

Link to article: science.org/content/articl…
Important: Image
Read 6 tweets
NO. @CDCgov guidance was NOT “confusing & overwhelming.”

It was and IS:
✅Intentionally misleading 
✅anti-science 
✅fueled by political COIs 

They:
✅Called common things “rare,” leading ppl to take unwitting risks
✅Lied when pressed
✅Did same w #Lyme & now w 🐒🦠 Image
Countless ppl following their guidance lost lives or their health bc @CDCgov withheld critical info from the outset, starting w the fact that #COVIDisAirborne & N95s were crucial.

Instead, they advised useless cloth & surgical masks long after N95s were widely avail to public.
They claimed being vaxxed made us “safe,” & no need to mask, while knowing breakthrough cases were common & causing Longcovid. They publicly lied & called it “RARE.”

There is no excuse and no “overhaul” that can reconcile this. 

Responsible parties must be held accountable.
Read 4 tweets
#LymeDisease diagnostic tests were designed to detect cases of *late Lyme arthritis*, a condition associated with certain genetics and which usually manifests as a single arthritic knee. This is the visual CDC uses ⤵️
People who have the genetic makeup for susceptibility to *late #Lyme arthritis* tend to produce a strong antibody response to #LymeDisease infection, but it builds over time. That’s why CDC & IDSA say “don’t test in the first 3 weeks.”
According to CDC & IDSA, #LymeDisease is *defined* by this small subset of people who are able to test positive by serology (antibody tests).

It should be the other way around: Define the disease, then establish testing that accurately diagnoses >95% of cases meeting criteria.
Read 12 tweets
It has been a few days since the release of our latest #LongCovid paper: an incredible amount of work from @VirusesImmunity and her team, as well as so many other brilliant and hardworking colleagues. As you might imagine it has generated quite a bit of 1/ medrxiv.org/content/10.110…
helpful discourse. I wanted to take some time to respond to some of the comments. First, and most importantly, we have always framed this project as a “pilot”. This paper was never intended to be definitive: there are incomplete elements of these data, and there is 2/
much more that needs to be done, however we saw many important things that we wanted to share with the #LongCovid (and the infection-associated chronic disease) community ASAP, so we worked to get this out fast. With that in mind, let’s discuss a few things:
1. Most important: 3/
Read 14 tweets
If #Covid was not a persistent infection lingering in 🧠 ❤️ 🫁 (sometimes ruining them) —even in those w “mild” or asymptomatic cases— I wouldn’t be that concerned abt it at this point.

BUT IT IS.

You deserve to know that & decide if u consent. #LongCovid

I DON’T.
I have not been overly worried abt the acute illness for a while Bc the acute illness IS NOT THE PROBLEM NOW for most. Vaxxed or not.

The real problem is the high rate of organ & vascular damage and elevated risk of sudden death following infection.
And the fact is we have NOTHING to prevent #LongCovid at this time OTHER THAN NOT BEING INFECTED.

If you’ve already been infected & are ok, great! That doesn’t mean you will be so lucky the next time or the time after that.

Me? I don’t play Russian Roulette with my organs.
Read 9 tweets
Without doing my own research, I wouldn’t have known:

✅12 “top” NYC docs were wrong, & it was #Lyme causing my ❤️ failure (I recovered w abx!)

✅ Covid is airborne

✅ N95s or better were the only masks that worked well against it

✅ herd immunity to Covid was a charade
Doing my own research has literally saved my life & the lives of many of my loved ones.

Anyone denigrating “doing your own research” is giving horrible advice & gaslighting you. Understand that they are afraid important truths you may learn.
Don’t know how many times people need to be sucker-punched and blindsided to see this.

Do your own research when things don’t feel right.

Trust your instincts.
Read 5 tweets
Not a ST - so dont

Im tired of watching the circles of the same 5-6 "heroes" in #LongCovid-Land stroke each others egos.

Been watching this for a long time.

And for what? Where is the help really?

Aside from some papers and online articles, who's helping who here?

2.5+ yrs
Most of the useful information out there came from already existing wisdom in the #MECFS & #Lyme Communities. - patients.

Most of the protocols, and supposed "helps" came from people rigorously trialing different things and communication via social & support platforms.
There is no one place where one can go to receive help that somehow found its way downstream from any of these "hero's" sources.

That place doesn't exist. At least not for me. If it does, then I have no problem being wrong. Just point, I'll go there.
Read 6 tweets
Esiste una malattia poco conosciuta ma che colpisce moltissime persone alcune anche famose, è una malattia che se sottovalutata o non diagnosticata ha conseguenze devastanti.

La malattia di #Lyme

Ma c'è una buona notizia

A thread

1/n Image
Malattia di Lyme o borrelliosi è una malattia veicolata dalle zecche ma causata dal batterio Borrelia. Il serbatoio è costituito da animali selvatici come piccoli roditori ma anche da animali da reddito o compagnia come i cavalli o i cani.

2/n Image
La malattia si sviluppa quando si viene morsi da una zecca contente il batterio. La malattia si sviluppa in 3 fasi, i sintomi cambiano e riguardano diversi distretti. Più tardi si agisce e peggiori e duraturi saranno i sintomi.
La terapia preve un antibiotico efficace.

3/n Image
Read 10 tweets
🧵 There’s been an uptick of doctors online claiming that #LongCovid #MECFS #POTS are psychosomatic.
What other illnesses were falsely thought to be psychogenic?

cancer, multiple sclerosis, asthma, ulcers, stroke, seizures, rheumatoid arthritis, neuropathy, anemia…
1/5
… tuberculosis, liver diseases, concussion syndromes, cysts, sleep apnea, AIDS, & more.

Even now some people w/ these illnesses are still doubted or questioned about anxiety & psychological state.

What were some incorrect, even harmful, past treatments for illnesses?
2/5
-diabetes: opium, taking baths, wearing flannel
-MS: arsenic, mercury, injection of malaria parasites
-heart failure: blood-letting, leeches
-cancer: lead, laxatives
-gout: purging, barley water
-ulcers, wounds: tobacco
-tuberculosis: avoidance of love & sex
3/5
Read 5 tweets
1 x mal das Wort Müdigkeit oder Erschöpfung gesagt, oder eben gerade auch nicht, aber doch mehr als drei Symptome aufgezählt, beim Arzt, sofort die F-48 Diagnose am Hals.

Warum?
Weil der Computer das vorschlägt. Ist so programmiert.

„Funktionelle Körperbeschwerden“
„CFS“

1/x Image
In Dtld. sind irgendwie alle Beschwerden „Funktionelle Körperbeschwerden“, auch diejenigen, die von der WHO als neurologische Erkrankung klassifiziert sind.1969!G 93.3 Myalgische Enzephalomyelitis. Umbenannt in „Chronisches Erschöpfungssyndrom“, gern als Müdigkeit bezeichnet. 2/x Image
Es ist also egal ob du Schwindel, Herzrasen, starke Schmerzen, Tinnitus, eine Belastungsintoleranz hast und nicht mehr laufen kannst (nur um ein paar Beispiele zu nennen), das alles landet erstmal in einem Abwasch. Und wird dann unter „Abwartendes Offenhalten“ ver-handelt.

3/x Image
Read 9 tweets
Yesterdays Thread by @julierehmeyer is very important for me.
(pls re-read the whole 🧵)

We here in Germany talk, if at all - about #MEcfs but almost never about the numerous #comorbidities, which of course have connections with each other, such as #PoTS #SmallFiber #MCAS

1/x
We have no awareness of, e.g, untreated #MCAS can harm to the whole body including connective tissue. Doctors don't know that. We have no awareness at all about causes and the unfortunate combination of various causes that can lead to #MEcfs & to the crash of the body.

2/x
The deeper I get into the topic, the more desperate I am. Because I cannot treat myself. How should that work?

Through #LongCovid we see how big the tragedy has become in a very short time all over the world:

3/x
Read 9 tweets

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