Discover and read the best of Twitter Threads about #lyme

Most recents (24)

馃敶Un grupo de pacientes de #EncefalomielitisMi谩lgica / #S铆ndromedeFatigaCr贸nica #Fibromialgia #SQM #EHS #POTS y #LYME nos hemos unido con el objetivo de dar #Visibilidad a nuestras patolog铆as, conseguir #Investigaci贸n para que nos den una soluci贸n a nuestra enfermedad
Abro hilo馃憞
Nos centramos solo en lo que nos une, dejando a un lado todas las diferencias o cualquier discrepancia por peque帽a que sea. Todos estamos de acuerdo en lo que necesitamos y nos centramos s贸lo en esto. Tenemos un proyecto para conseguir este objetivo, pero necesitamos ser muchos.
Pod茅is participar todos los que est茅is dispuestos a ayudar: pacientes, familiares, amigos, conocidos, asociaciones, as铆 como cualquier persona que quiera ayudarnos. Entrad aqu铆, en nuestro grupo de Facebook, ah铆 explicamos c贸mo lo vamos a hacer:馃憞 facebook.com/groups/2486980鈥
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 鈥渧accines,鈥 UConn declares, 鈥淚t鈥檚 the lipids, stupid!鈥

鈥淐hemical removal of the lipid portion of purified M. pneumoniae lipoproteins eliminated VED...鈥漑vaccine-enhanced disease]

scienmag.com/uconn-research鈥
WHY do 鈥渟cientists鈥 still think it鈥檚 cool to inject lipoproteins (especially of the highly acylated variety)? WHY is UConn suddenly saying, oh, isn鈥檛 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鈥檛 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 馃が
Read 7 tweets
I don鈥檛 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 鈥渦nmasking鈥 of tethered cord syndrome, a condition many patients with craniocervical instability have. [3] me-pedia.org/wiki/Tethered_鈥
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 馃嚚馃嚘 to what has been known + documented since 1985? See thread /1
open.alberta.ca/dataset/58776f鈥
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.馃憞@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.馃憞@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
Bill Gates: Coronavirus may be 鈥榦nce-in-a-century pathogen we鈥檝e been worried about鈥
馃憠Instill fear to roll out #Vaccines
馃憠Robert F. Kennedy Jr. Compared Vaccines to a Holocaust
#CoronaOutbreak #mondaythoughts
Deadly Secrets of Plum Island #LymeDisease
Under Project Paperclip the U.S. brought SS Nazi Erich Traub to run BioW labs. Plum Island (Lab 257) was where they weaponized tics. Many w/ Lyme maybe dx w/ CFS, Fibro, Mono, ME/CFIDS, MS,etc #CoronaOutbreak
馃憠youtube.com/watch?v=VT6gCq鈥
Lessons From Lyme Disease: Six Reasons The CDC鈥檚 COVID-19 Failure Was Predictable #LymeDisease #COVID19
馃憠A 17-year-old boy who had tested negative, went untreated & died after Lyme infected his heart
CDC denies Lyme/ME/CFS/GWF #CrimesAgainstHumanity
forbes.com/sites/marybeth鈥
Read 24 tweets
One of my greatest heroes! Dr. Judy Mikovits PHD Fired & Jailed for proving the Link Between Retroviruses & Chronic Diseases: ME/CFS/CFIDS/Lyme-XMRV retrovirus
RedCross refused to test for XMRV!
Patients are suffering & dying in silence
youtube.com/watch?v=CqdLft鈥
#SundayMorning
We already have an epidemic in the U.S. only you will not see patients because they are too ill to fight or engage in normal activities!
People with Lyme, ME/CFS, CFIDS +other diseases are really suffering from infections diseases/XMRV
The CDC knows #SundayThoughts #coronarvirus
The Tuskegee Syphilis Experiment
They wanted to see how black men they would die, treatment included Arsenic/Mercury
1/3/2019 U.S. Judge stated Johns Hopkins,Bristol-Myers& Rockefeller Found. face a $1B lawsuit for their roles affecting Guatemalans
Margaret Sanger鈥檚 Eugenic Plan
Read 27 tweets
My best friend of 42 years yes, 42 years, helps sometimes with transportation. I can no longer drive. 馃挃
Please help. 馃槶
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. 馃様
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. 馃槒
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. 馃槶
#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. 馃槳
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. 馃挃
Read 10 tweets
Many of you know our situation 馃憞 but today my mom had to use her Target card馃幆,(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 $. 馃槶
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. 馃挃
Read 15 tweets
馃挜馃挜馃挜 BREAKING NEWS! 馃挜馃挜馃挜

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! 馃鉁 #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 馃挃
#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-鈥
Please help us! 馃槶
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. 馃檹
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-鈥
Please help us! 馃挃
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-鈥
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 馃槳).
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
#LymeAwarenessMonth
B4 I was bitten by a tick in 2011, I was a practicing trial atty.
I must now use a walker & my 77-year-old mom is my caregiver. She helps me bathe/dress & is my driver.
She can't afford the @$198/mo I need to digest food. We get $15/mo -foodstamps
SOS #help
*$198/mo RX* EnteraGam
It's normally $1600/mo but I get a pharmaceutical scholarship from the manufacturer.
I normally have 2-3 Dr appts/wk. I was just in the hospital AGAIN last month: approx. 8th time, excluding ER visits.
I can't eat w/out this RX.
Please help us 馃挃 馃槶 #Lyme
Trying my best to stay upbeat, positive, & RESIST!
I make 5 calls to my MOC every day & use @resistbot.
I can't participate as fully as I would like but I am doing my best.
Please read our story above or on my & my mom's (@DemForLife3) pinned Tweets.
Plz put in any RT rooms. 馃挃
Read 14 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-鈥
Please take a moment & read our story. 馃挃
NEWS!
I just found out that I will be getting $514/mo for SSI but that has to go towards our home & bills/food.
I still need help w/$198/mo RX.
Also received notice that foodstamps will be CUT to $15/MONTH! 馃槶
Who could possibly eat on 50 cents a day or survive on $17.13/day?
Read 20 tweets

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