Discover and read the best of Twitter Threads about #Lyme

Most recents (24)

@bennessb Yes it is. Inaccuracies and flat out lies. As a ChronicLyme/PTLDS patient who's been denied testing, treatment, & support for over 20 yrs this is a painful topic. They are still using the SAME flawed testing that missed my dx in 1993. The ELISA that misses around 50% of cases.
@bennessb I fucking hate the CDC for what they've done to me & my fellow Lyme warriors. Drs run out of business. Some that we travel to see across more than 3 or 5 state lines bc they actually were helping & took insurance. Sorry. I want to burn things down when i think of the yrs stolen.
@bennessb We've been trying to get actual patients & Lyme literate drs on the CDC panel that makes the treating guidelines for over 10 yrs. We still can't be heard. We still can't sit at the table. It's maddening.
Read 27 tweets
Maladie de #Lyme.
(1/4) Des associations de patients déboutées de leur plainte pour « non fiabilité des tests de dépistages ».
Les attendus du jugement sont intéressants (…)
ouest-france.fr/societe/justic…
(2/4) Le tribunal: «Ces tests sont calibrés selon l’état de la science au moment de leur mise sur le marché, avec des limites qui sont explicitées», «les demandeurs n’établissent pas, ni ne soutiennent que des recherches plus récentes auraient permis d’obtenir d’autres résultats»
(3/4) Certes, la justice ne dit pas la science. Mais le jugement est conforme à l’état des connaissances. S’il avait été dans l’autre sens, gageons qu’il aurait été largement médiatisé par les détracteurs du consensus scientifique comme "preuve scientifique de leurs propos".
Read 4 tweets
Lecture de mon premier numéro de science et pseudo-sciences @afis_science @JeanPaul75. On peut dire que ca démarre fort : « le consensus scientifique n’est pas un supermarché » #Lyme #Vaccins #homéopathie #nofakescience #nofakemed Image
Octobre - décembre 2019, ils avaient vu juste !
Read 3 tweets
🔴Un grupo de pacientes de #EncefalomielitisMiálgica / #SíndromedeFatigaCrónica #Fibromialgia #SQM #EHS #POTS y #LYME nos hemos unido con el objetivo de dar #Visibilidad a nuestras patologías, conseguir #Investigación para que nos den una solución a nuestra enfermedad
Abro hilo👇
Nos centramos solo en lo que nos une, dejando a un lado todas las diferencias o cualquier discrepancia por pequeña que sea. Todos estamos de acuerdo en lo que necesitamos y nos centramos sólo en esto. Tenemos un proyecto para conseguir este objetivo, pero necesitamos ser muchos.
Podéis participar todos los que estéis dispuestos a ayudar: pacientes, familiares, amigos, conocidos, asociaciones, así como cualquier persona que quiera ayudarnos. Entrad aquí, en nuestro grupo de Facebook, ahí explicamos cómo lo vamos a hacer:👇 facebook.com/groups/2486980…
Read 4 tweets
1/ Classic #opticneuritis is characterized by a sub-acute loss of vision in one Eye, with central #scotoma, pain on #eyemovement, positive #RAPD
- Fundus exam is usually normal
- Age range 15-45 years
2/Talking about #MOGAntibodies:
- More frequent in #pediatric population, Associated with #ADEM
- #MOG IgG serum titers depend on disease activity and is mainly from extrathecal origin, enters #CNS from systemic circulation and reaches CSF through passive diffusion or broken #BBB
Read 10 tweets
More than two decades after assaulting Czech children with lipidated OspA “vaccines,” UConn declares, “It’s the lipids, stupid!”

“Chemical removal of the lipid portion of purified M. pneumoniae lipoproteins eliminated VED...”[vaccine-enhanced disease]

scienmag.com/uconn-research…
WHY do “scientists” still think it’s cool to inject lipoproteins (especially of the highly acylated variety)? WHY is UConn suddenly saying, oh, isn’t it amazing how we solved the mystery of the century! WHY???

Because #LYMErix.
We had a #Whistleblower for that, and she, @KMDickson, got the standard whistleblower treatment so the #pharma criminals wouldn’t have to answer for their crimes. And here we are 20+ years later, with one of the same institutions involved in the OspA scam telling us #lipidsbad 🤬
Read 7 tweets
I don’t know how to get the word out about this. I am concerned about #MECFS patients who are a) having craniocervical fusions b) in Europe and c) are not actively engaged in patient groups on Facebook. [1]
My primary concern is that a significant proportion of patients who have fusions experience an initial improvement, but then have worsening symptoms roughly 5-7 months after surgery.[2]
In many cases, this is due to the “unmasking” of tethered cord syndrome, a condition many patients with craniocervical instability have. [3] me-pedia.org/wiki/Tethered_…
Read 76 tweets
My Dad's recent #COVID19. Not an academic document-just sharing a human experience of outrage & triumph.

My Dad is almost 90, frail as can be, in a nursing home. I went to visit him 3 months ago & wore a mask before it was fashionable to protect him just in case I had it.
I sent an email to 5 people at the nursing home the next day saying that I was shocked that none of the staff or visitors were wearing PPE. I warned them that the now infamous Seattle nursing home which had massive deaths early on in the #COVID pandemic was a sentinel event.
I warned them that they needed to "act now" to prevent a "major tragedy," but not a single one of the recipients responded to my email, silence. I reached out to my Dad's doctor to discuss the situation. She felt that he was a sitting duck and that prophylaxis was appropriate.
Read 12 tweets
When will @GovCanHealth update website to acknowledge mom to baby transmission #Lymedisease? Alberta Health does, CDC does, Health Canada officials did in 1988. Why take pause in alerting 🇨🇦 to what has been known + documented since 1985? See thread /1
open.alberta.ca/dataset/58776f…
Is there evidence that Borrelia burgdorferi, the agent of Lyme disease can be transmitted from an infected mother to her baby? YES! Below my 2019 presentation for
@ilads_lyme. Not sure how much more #evidence is needed to acknowledge the risk. /2
Can Borrelia burgdorferi cross the placental barrier + transmitted in-utero? /3
Read 31 tweets
Chronic illness in #LymeDisease is shockingly common. This occurs more frequently if #Lyme is first diagnosed and treated at a later stage, but occurs at every stage of the disease.👇@Lymenews @BayAreaLyme @LymeChallenge @danaparish @ProjectLyme @lymelegacy @LymeOntario
Even for early #Lyme (erythema migrans stage illness), a study by Johns Hopkins demonstrated that about 40% did not get regain their health at 6 months after treatment.👇@LymeAlliance @Lyme_Connection @liv_lyme @UKLyme @AdvocatLyme @LymeDiseaseLDA pubmed.ncbi.nlm.nih.gov/23462300/
A study from Danbury Hospital in CT demonstrated that 61% of patients still had their initial Lyme symptoms 6-12 months after treatment for early Lyme, (erythema migrans stage illness). @LymeDiary @LymeDiseaseAus @LymeAction @LymeDiseaseNYC pubmed.ncbi.nlm.nih.gov/24970880/
Read 14 tweets
#Lyme and #MultipleSclerosis can be clinically indistinguishable, with some docs differentiating them based on 40 year-old, inaccurate Lyme antibody tests. See thread. @danaparish @BayAreaLyme @Lymenews @lymehopecanada @ProjectLyme @LymeChallenge pubmed.ncbi.nlm.nih.gov/28480854/
Spirochetes had been found in human MS autopsy tissue since the early days of medicine. They called it Spirochaeta Myelophthora. Many researchers have published the same findings. pubmed.ncbi.nlm.nih.gov/13118387/
Lyme bacteria (back then called cystic forms, now called round bodies or persisters) was isolated from spinal fluid of MS patients but not from healthy controls apart from one who had a history of Lyme. pubmed.ncbi.nlm.nih.gov/11787831/
Read 10 tweets
Ik krijg vaak de vraag of Innatoss ook iets kan doen op het gebied van het Coronavirus. Mijn reactie is altijd "nee". Niet omdat de de kennis niet zouden hebben, maar vooral omdat Innatoss te klein is om de snelheid te krijgen die nodig is om impact te hebben op de verspreiding.
Om impact te hebben moet je per direct 10 ingewerkte mensen (of meer) dedicated aan het onderwerp kunnen laten werken. Je hebt sequencing nodig om te kunnen traceren welke stammen met elkaar verbonden zijn. Dat kan @MarionKoopmans nu (en niet pas over een jaar).
"Iets" doen is verspilling van tijd en geld. In Nederland moeten alle labs met man en macht werken aan begrijpen waar de infecties vandaan komen. Dit moet groot en met alle wetenschappelijke en technologische power die Nederland in huis heeft. En dat is veel.
Read 4 tweets
My best friend of 42 years yes, 42 years, helps sometimes with transportation. I can no longer drive. 💔
Please help. 😭
I am doing my d*mndest to keep it together and RESIST this 'ADMIN'!!!
Until the last breathe leaves my body...
I've done Aqua Therapy for a year.
The results were minimal. 😔
If my mom can't afford my RX that I have to have.
I can't DIGEST food w/out it.
It's pretty important. 😏
Read 16 tweets
Please help! I have a brain tumor/IIH & such severe intestinal damage that I can't DIGEST food w/out enteral food RX @$198/mo, even w/pharma discount.
My now 78-year-old mom is my caregiver.
We get $72/mo for food + trying to save home. 😭
#Lyme #IBD #help
In 2011, I was bitten by a tick. I wasn't treated for 11 mos, despite traveling to the MAYO clinic (which I still owe $9000!)
I contracted E. Chaffeensis, Rickettsia, & #Lyme.
By then, the bacteria had invaded spinal cord & brain. I've had 8 spinal taps to alleviate the pain. 😪
During 1 of my many hospitalizations, I caught Vanc-resistant C. Difficile. I fought it for 3.5 yrs but had to have 2 FM transplants to save my intestines & life.
Now, bc of the damage to my intestines, I can't digest/ absorb food w/out RX
@ $198/mo, even w/a manuf. discount. 💔
Read 10 tweets
Many of you know our situation 👇 but today my mom had to use her Target card🎯,(over it's limit), to get a cash advance of $90 to pay for HER meds.
She's on 4 diff.high BP meds.
She's already cut her meds in 1/2 to save $. 😭
McConnell: sign the bill lowering drug costs!!!
My mom is now 78-year-old yrs old.
She's an RN who worked until she was 75.
She had to quit bc my health continues to decline.
B4 the #ACA, we went through our life savings on my #Healthcare.
We even went to the MAYO clinic (I still owe $9000)
No one should go bankrupt bc health
I was a practicing atty when I was bitten by a #tick.
I worked as a defense atty & then w/abused women & children.
Despite a severe rash, meningitis, & flaccid paralysis, I wasn't treated for 11 mos.
By then, the E. Chaffeensis, Rickettsia, & #Lyme was in my spinal cord & brain.
Read 19 tweets
A Twitter friend of ours sent us some gluten free food about 2 yrs ago.
My now 78-year-old mom & I get $72/mo for food.
Please help!
A thread explaining my medical situation.
Charles Gaba & Topher Spiro have written articles about us. We are legit.
I have a brain tumor/IIH & such severe intestinal damage that we need $198/mo for the RX that allows me to DIGEST food. 💔
Read 15 tweets
💥💥💥 BREAKING NEWS! 💥💥💥

There seems to be a GLOBAL EPIDEMIC of #ChronicIgnoranceSyndrome that is effecting the medical establishment & resulting in constant misinformation & treatments for #ChronicPain #CFS #pwME #Fibromyalgia #hEDS #EDS #Lyme #FND, the list is...1/2
shocking & endless. So during #InvisibleDisabilitiesWeek we ALL have an opportunity to highlight this spread of #ChronicIgnoranceSyndrome, the effect this has had on our #MentalHealth & what we are collectively doing daily to fight this medical ignorance & abuse! 🦓✊ #MAIMES
Read 3 tweets
I have a brain tumor/IIH & such severe intestinal damage that I can't digest food w/out enteral food RX.
It's $198/mo even w/a pharma scholarship.
My now 77-year-old mom is my caregiver & she can't afford it.
We get $64/mo for food + trying to save home. Please help!
In 2011, I was bitten by a tick. I contracted E. Chaffeensis, Rickettsia, & Lyme. I wasn't treated for 11 mos. The bacteria went to my spinal cord/brain.
Please help us 💔
#Lyme #IBD #Fibromyalgia #Spoonies
During 1 of my numerous hospitalizations, I caught Vanc-resistant C. Difficile for 3.5 yrs & had to have 2 FM transplants.
I can't digest/ absorb food w/out EnteraGam.
It's norm. $1600/mo but I get a pharma discount, making it $198/mo. My 77-year-old mom still can't afford it.
Read 8 tweets
I was bitten by a #tick in 2011 & it's turned my worle upside down!
I was a practicing trial atty & am now on a walker.
I contracted E. Chaffeensis, Rickettsia of unknown et., & #Lyme.
I wasn't treated for 11 mos. By then, the tick bacteria had invaded my spinal fluid/brain.
Read 12 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please help us! 😭
Can't afford next mos.' RX @$198/mo necessary to digest/absorb food.
My now 77-year-old Mom is my caregiver. We get $64/mo for food (long gone) + trying to save home.
#Lyme #SaveOurCare
#Fibromyalgia
#IBD
Even $5 or $10 will help + RTs are free. 🙏
I was bitten by a #tick in 2011 & it utterly destroyed my life.
I contracted E. Chaffeensis, Rickettsia, & what was later found to be #Lyme.
I wasn't treated for 11 mos. By then, the bacteria had invaded my spinal cord + brain.
#LymeDisease #healthcare #tick #foodstamps
Read 16 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please help us! 💔
I was a practicing trial atty when I was bitten by a tick. I contracted E. Chaffeensis, Rickettsia, & what was later determined to be #Lyme.
I also contacted Coxsackie B4 virus-a cousin of polio. I wasn't treated for 11 mos. I have lost most use of my left side (I'm left- handed)
Read 17 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
I waa bitten by a tick in 2011 & not treated for 11 mos.
Went to the Mayo Clinic-found Coxsackie B4 virus (a cousin of polio) which left me w/out most use of L side (L handed 😪).
I caught Vanc-resistant C. Difficile, had 2 FM transplants & need RX @$198/mo just to digest food.
Drs back in Louisville eventually discovered tick bacteria (E. Chaffeensis, Rickettsia of unknown etiology, & #Lyme-Dxd 1 yr later). All went to spinal fluid & brain.
Have had 8 spinal taps.
3.5 yr C. Diff/2 FM transplants left me unable to digest food w/out enteral RX @$198/mo.
Read 6 tweets
[1] When @Comey was fired, what was in his desk drawers ?

* An ENTIRE #Levinson folder - A handy contact for routing drugs and uranium through #Iran
* Two whole folders on "Going Dark" (WTF?)
* CDC Documents (FU Rosenstein - #Lyme is real)
* "HAIR Review"

HAIR Review?
[2] "HAIR"

One Initialism : "Honore Accepto Impensam Reliquit"

In fact its the only initialism I can find for HAIR
[3] Thanks to @CultKashmir , we have another one (perhaps more practical) :
HAIR = " HUMA ABEDIN INTEL REPORT "
Read 4 tweets

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