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The #Lyme disease community's leading source for news, insight and advocacy. Publisher of The Lyme Times, creator of MyLymeData. A 501(c)(3) organization.
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This special issue of the Lyme Times includes articles written by
#MCAS
experts, including
@DrTaniaDempsey
,
@dr_todd
Maderis;
@DocCarnahan
; and Beth O'Hara, FN.
There's also a review and excerpt of Dr. Neil Nathan's important new book.
15
34
68
"My message to
@JustinBieber
: The Lyme Community feels your pain. We hope you’re getting the help you need to overcome this serious condition. We’ll be watching your documentary to find out more. God bless." ~
@dorothyleland
11
224
508
Incredible Hulk actor Mark Ruffalo has posted on social media about having personal experience with “brutal, persistent” Lyme disease. Thank you for sharing your story
@MarkRuffalo
💚
#LymeDiseaseAwarenessMonth
5
97
446
“Based on our past 30 years of research, we no longer think of Alzheimer's as primarily a disease of the brain. Rather, we believe that Alzheimer's is principally a disorder of the immune system within the brain.”
6
129
433
.
@AvrilLavigne
discusses writing her latest single "Head Above Water" and how it was influenced by her experience fighting
#Lyme
Disease. Via
@billboard
#HeadAboveWater
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115
271
"I spent the last few years at home sick fighting Lyme Disease. Those were the worst years of my life as I went through both physical and emotional battles. I was able to turn that fight into music I’m really proud of." says
@AvrilLavigne
via
@JustJared
13
122
259
5
33
232
.
@AvrilLavigne
released her new music video “Head Above Water” which draws on her personal experience with Lyme disease, recalling a time when she felt she was dying.
#HeadAvoveWater
#LymeDisease
Click here to watch:
5
79
182
BREAKING NEWS! In a change of language from the past, the CDC now puts Borrelia (
#LymeDisease
) on a list of "disease agents that have been linked to chronic symptoms."
What are the implications of this?
READ MORE
16
92
205
💊
@BayAreaLyme
has announced the development of a potential new drug, HS-291, that targets and destroys Borrelia burgdorferi.
Inspired by the work of the late Dr. Neil Spector, this represents a new approach to combating
#LymeDisease
6
77
202
In emotional letter to her fans, Avril Lavigne reveals she 'accepted death' as she battled Lyme disease. "I had accepted death and could feel my body shutting down. I felt like I was drowning."
@AvrilLavigne
#HeadAboveWater
7
72
171
An antibiotic known as hygromycin A has effectively cleared
#LymeDisease
in mice. Dr. Kim Lewis, says human trials of his discovery may begin as early as next year.
Could this ‘new’ antibiotic treatment prevent chronic Lyme disease? via
@Northeastern
6
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177
BREAKING NEWS Wormser's off the Working Group. -
17
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148
“If Long COVID is real, and Long COVID looks [almost] exactly like chronic Lyme, then do we need to go back and reassess some of our assumptions about chronic Lyme?” By
@Jamie_Ducharme
via
@TIME
17
56
151
.
@AvrilLavigne
recounts her battle with Lyme disease on “Head Above Water,” her first new song in five years.
#HeadAboveWater
via
@RollingStone
2
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128
In a letter to her fans, Avril Lavigne gets truthful about her struggle with Lyme disease.
#HeadAboveWater
2
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123
Debbie Gibson, the 48-year-old pop star, has been living with Lyme disease for six years.
@DebbieGibson
#LymeDisease
3
22
128
NY's Sen. Gillibrand pushes for $200 million in federal Lyme funding.
She's calling for research to understand the full impact of Lyme and other tick-borne illnesses in the Fiscal Year 2025 government funding bill.
9
37
123
After his son's suicide, an Oregon father, a retired doctor, wants others to know about tick-borne illness.
“This stuff's insidious,” Dulude said. “You get chronically ill and then six years later, you're taking your life, like my son.”
via
@registerguard
8
51
120
Dr. Neil Spector needed a heart transplant due to unrecognized
#Lymedisease
and has now become a strong spokesperson for Lyme patients.
3
59
114
“It gave me a purpose,” she adds of her journey, “and made me find myself all over again.”
@AvrilLavigne
#LymeDisease
#HeadAboveWater
2
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99
The Canadian pop-rock artist
@AvrilLavigne
, has explained in searing detail the health problems that kept her away from the limelight for so long.
#LymeDisease
#HeadAboveWater
4
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101
Sometimes, a Lyme-related rash is ignored because it doesn't look like a bull's eye. Meaning it's not a red ring-within-a-ring.
In fact, a recent
@LymeBiobank
study of Lyme rashes found that only 6% of them looked like bull's eye or target🎯
Read more:
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115
U.S. Senator Richard Blumenthal announces new federal funding for tick research.
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25
106
HIV and Lyme were discovered within a year of each other. Thirty-plus years later AIDS patients are receiving designer drugs, while Lyme patients continue to receive 60-year-old antibiotics that are marginally effective.
"Twenty-five years ago, the AIDS epidemic was wreaking havoc around the world. Although “HIV denialists” threatened to undermine research efforts to combat the epidemic,...
8
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25
4
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100
''I will always continue to fight and raise awareness about
#Lymedisease
with the Avril Lavigne Foundation."
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95
This researcher has investigated the strong similarities between long COVID and chronic Lyme disease.
10
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106
Three cheers for
@AvrilLavigne
! Thank you for raising awareness for
#Lyme
, and we hope you're feeling better.
0
56
97
New clinical research by Bruce Patterson, MD, finds "that between one in five and one in three people who came to us thinking they might have long COVID actually had results that indicate"
#LymeDisease
@brucep13
7
53
102
Is it possible some people with
#LongCovid
might also be battling an untreated (or under-treated) tick-borne disease like Lyme disease, bartonellosis, anaplasmosis, or babesiosis?
A research paper from Poland suggests this may be true.
READ MORE:
6
51
102
"It is hard to separate
@AvrilLavigne
’s illness from her sixth album, named after a song that came to her as she lay in her mother’s arms, feeling as if she was drowning."
#LymeDisease
0
38
83
PODCAST: Filmmaker says the CDC has 50 years of inaction on Lyme disease to make up for. She wants a Congressional hearing. via
@Lymenews
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She's co-director of The Quiet Epidemic Lyme film. He's the Law and Order actor whose family has dealt with tick-borne illness for years. They want a Congressional hearing on Lyme disease.
7
33
96
In Newsweek, The
@QuietEpidemic
co-director Lindsay Keys calls for Congress to "intervene and change history" regarding Lyme disease.
Lyme Disease Is Quietly Debilitating Millions of Americans and Future Generations | Opinion
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#Warrior
“This is one of the first songs I wrote for the album after
#HeadAboveWater
. They are both about the health battle I continue to fight every day. I hope my songs can help you find strength if you need it….”
@AvrilLavigne
#LymeDisease
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The Lyme Pandemic that COVID Uncovered.
Like with
#longCOVID
, the medical establishment puts the burden of proof on the patient.
#LymeDisease
by Dr. Bruce Patterson
@brucep13
6
41
89
The U.S. Army Medical Research Institute of Infectious Diseases received a cease and desist order from the CDC on July 15. Maryland lawmakers are now asking why Congress wasn't notified of this order.
15
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Researchers have discovered more about how Lyme disease evades the body's immune system.
They found that a protein in the Lyme bacteria sends out a signal that says "don't eat me" to the immune system--and the immune system obeys.
READ MORE
@BayAreaLyme
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A percentage of every tour ticket sold goes to the Avril Lavigne Foundation which supports people with
#Lyme
disease.
'Warrior' Avril Lavigne resurfaces post-Lyme Disease with new LP, tour
1
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1
40
75
“Clinical researchers at Johns
@HopkinsMedicine
have found that Lyme-disease-associated brain alterations are biologic and measurable, not psychosomatic. These discoveries are significant but not yet well known…”
@NancyNDougherty
4
41
88
When they learned he had
#LymeDisease
, his wife said: “I picked up Kris's prescriptions for doxycycline and Alinia. Soon after, we also started Hyperbaric Oxygen Therapy (HBOT) and Transcranial Magnetic Stimulation (TMS) of the frontal lobe.“
#dementia
3
31
86
Dr. Neil Spector, a Duke University cancer researcher who nearly died from complications of Lyme disease, is now turning his attention to finding a cure for Lyme and Bartonella.
#cancer
#Biology
#curesnow
#LymeDisease
2
42
84
.
@justinbieber
allegedly said he had felt severely depressed for much of 2019, but it wasn’t until later in the year that his doctors realized he was suffering from Lyme disease.
#LymeDisease
5
30
78
Plants that repel
#ticks
include rosemary, chrysanthemum, mint, lemongrass, sage, lavender, garlic, onions, marigold, petunias, and juniper.
1
40
70
Mark Ruffalo has posted on social media about experiencing “brutal, persistent” Lyme disease.
The actor encouraged people to watch the Lyme documentary “The Quiet Epidemic.”
Click here for how to view this important film.
1
27
83
Human safety trials of a novel antibiotic treatment for Lyme disease developed by
@Northeastern
professor Kim Lewis are scheduled to start in April. (Hygromycin-A targets
#LymeDisease
without harming anything else in the gut microbiome.)
READ MORE
3
30
83
New York State Senator Pam Helming has announced that legislation she co-sponsored to review insurance coverage for the treatment of Lyme and tick-borne diseases has passed both the Senate and the Assembly unanimously.
7
20
75
The bipartisan measure is called the TICK Act--"Ticks: Identify, Control, and Knockout." If passed, it would be the most money ever approved for tick-borne diseases.
#LymeDisease
3
30
79
Molecular ‘warhead’ from Duke Health targets bacterium which causes Lyme disease.
The innovative approach holds the potential to target not only Lyme and other bacteria, but also fungi such as yeast and viruses.
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“How could a disease of epidemic proportions involving both animals and human patients be missed or remain hidden from diagnosticians...for more than 100 years or perhaps an even a much longer...?” ~ Dr. Breitschwerdt
#OneHealth
#Bartonella
4
42
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Actor Mark Ruffalo (aka The Hulk) has posted on social media about having personal experience with “brutal, persistent” Lyme disease.
He shared his comment on Facebook, Twitter and in an Instagram story.
READ MORE:
4
30
75
Sometimes, a Lyme-related rash is ignored because it doesn't look like a bull's eye. Meaning it's not a red ring-within-a-ring. A
@LymeBiobank
study of Lyme rashes found that only 6% of them looked like a bull's eye.
READ MORE
#LymeDiseaseAwarenessMonth
1
49
79
Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart.
Learn more: …
#LymeDiseaseAwarenessMonth
4
51
78
New paper entitled “Correlation between COVID-19 and previous exposure to Borrelia spp.” strongly suggests that a history of
#LymeDisease
contributes to the risks of COVID-19.
#longCOVID
6
34
78
Saskatchewan Roughriders star defensive back, Jovon Johnson
@Mr_Consistent_2
hosting his 2nd annual BBQ in Wascana Park to raise awareness for
#Lyme
Disease.
2
24
71
Borrelia burgdorferi has the ability to spread beyond the initial site of infection (i.e. a tick bite) via the blood to affect other tissues and organs. “That’s when most of the problematic aspects of Lyme disease begins,” says Dr. Jacob Lemieux. via
@time
2
28
75
Patients with
#LymeDisease
are often misdiagnosed with fibromyalgia, MS, ALS... Do you know the signs?
Here Dr. Alfred Miller offers some excellent advice:
#Neuroborreliosis
#chronicpain
#chronicillness
#Spoonies
4
52
71
77 groups in 8 countries (US, Canada, Australia, France, Germany, the UK, the Netherlands, and Belgium)
join protest of IDSA Lyme guidelines.
1
34
69
Johns Hopkins Announces New Clinical Trial for Post-Treatment Lyme Disease Using Psilocybin.
7
35
70
“Almost no one knows that I wake up every day with a pain that spreads throughout my body.”
#Lyme
5
30
66
Flags were lowered to half-staff today across
@DukeU
for
@drneilspector
a nationally recognized physician-scientist, translational research leader
@DukeCancer
and oncology mentor who passed away on Sunday, June 14, 2020. He was 63. 💔🙏🏻💚
2
33
69
"Getting
#Lymedisease
is no fun, I'll tell you that right now," says singer Daryl Hall.
#TheLymeTimes
8
28
66
“Let’s establish an NIH office for long COVID, long Lyme and more…”
Similar to the NIH Office of AIDS Research that was created 35 years ago.
8
21
72
It passed! Just squeaked under the wire. What a victory for Lyme patients in Massachusetts.
1
51
67
'I'm quite the warrior:'
@AvrilLavigne
resurfaces post-Lyme disease with new album, tour.
#HeadAboveWaterTour
via
@TheTorontoSun
0
19
60
$20 million for Lyme disease. That's 43% more than last time. Now, on to Senate.
@lyme_action
@dorothyleland
via
@Lymenews
2
25
67
Tulane's Monica Embers, PhD, and her team found seven combinations of antibiotics that could eliminate Lyme disease in mouse tissue samples.
READ MORE via
@BayAreaLyme
2
21
68
"It's frustrating because you can't get the treatment that you need unless you pay privately, which because I'm not working, I can't afford to do. It's very frustrating, it's very isolating, and there's not enough research into it."
#LymeDisease
8
20
67
“It’s amazing how chronic illness turns friends into strangers and strangers into friends.”
#LymeDisease
# via
@HuffPost
6
13
64
"It’s so hard to explain to someone else without sounding like you’ve lost your mind."
#LymeDisease
6
25
67
Bartonella are bacteria that live primarily inside the lining of the blood vessels. The disease that results is called bartonellosis.
Bartonella can invade and “literally affect every system in the body.”
How prevalent is bartonella in chronic Lyme?
3
43
67
“Using research-level imaging, we found that there is an underlying biology to patients’ cognitive symptoms, which is probably similar to the biology of long COVID and chronic fatigue syndrome,”
@aucott_john
said. “These are not psychosomatic illnesses.”
3
33
65
Did the Pentagon's weaponization of ticks lead to the spread of Lyme disease? Watch
@krisnewby
via
@FoxNews
5
35
61
“Chronic Lyme patients skew female, and for decades, clinicians have dismissed their symptoms… The medical establishment has “done nothing but call them crazy,” Tal says, “instead of admitting that they just don’t understand what’s going on.”
5
26
65
"Something's going on with women's immune systems, and we're dismissing it."
#Lyme
#womenshealth
-
6
25
64
Scientists are finally looking at infection as the cause of Alzheimer's Disease.
#Alzheimers
#TheInfectionConnection
3
37
60
Scientist at Columbia Univ working on single test capable of detecting multiple tick-borne pathogens.
#LymeDisease
#Innovation
3
24
46
Inspired by the work of the late Dr. Neil Spector, this research represents a new approach to fighting Lyme disease.
Developing a drug to target and destroy
#LymeDisease
pathogen via
@BayAreaLyme
3
22
65
Supermodel
@bellahadid
: "I couldn’t get out of bed for six days. And my brain would get all foggy, and I couldn’t see. That was the hardest time of my life."
#LymeDisease
4
30
59
72% of chronic Lyme disease patients are initially misdiagnosed, almost all with diseases that offer no hope of a cure.
Learn more:
#LymeDiseaseAwarenessMonth
3
26
53
Ticks can carry many bacteria, viruses, fungi and protozoans all at the same time and transmit them in a single bite.
Download our Lyme disease & co-infection poster for FREE.
#LymeDiseaseAwarenessMonth
0
41
61
Sometimes, a Lyme-related rash is ignored because it doesn't look like a bull's eye. Meaning it's not a red ring-within-a-ring. Yet, a recent LymeBiobank study of Lyme rashes found that only 6% of them looked like bull's eye or target🎯
Read more:
5
28
61
By mapping the genetic code of particularly virulent strains of Lyme disease bacteria, scientists may be a step closer to figuring out why symptoms persist for months, or even years, in some people.
0
34
62
Kris Kristofferson suffered memory loss, & was misdiagnosed with Alzheimer’s. Final got his life back after diagnosis and treatment for
#Lyme
disease by
@danaparish
2
35
61
Ronald Davis holds up a nano chip that will likely be useful for diseases such as
#CFS
#LymeDisease
&
#Fibromyalgia
1
46
60
Mark Ruffalo has posted on social media about experiencing “brutal, persistent” Lyme disease.
The Hulk actor
@MarkRuffalo
encouraged people to watch the Lyme documentary “The Quiet Epidemic.”
@QuietEpidemic
READ MORE
#LymeDiseaseAwarenessMonth
0
31
63
Today Senator Collins proposed the
#TICKact
be renamed “Kay Hagan TICK Act” and it was passed unanimously by the HELP Committees. Next step is to the floor. Call your representatives and tell them to support the Kay Hagen TICK Act!
0
32
60
In the absence of an accurate test, the CDC agrees to add disclaimer to Lyme disease case definition. Lyme is a "clinical diagnosis"...
#LymeDiseaseAwareness
5
26
58
CDC Warning ⚠️ Test for
#LymeDisease
prone to false-negatives. Encouraging providers to treat based on symptoms.
6
68
59
Seeking to understand why some Lyme patients continue to feel sick even after they've been treated, NIH awards $3.2 million for "post-treatment Lyme" research.
5
21
62
.
@PhyllisMervine
gave these comments to the TBDWG.
Who gets to decide what constitutes scientific evidence for chronic Lyme?
2
23
57
"He told me that “chronic Lyme doesn’t exist” and that I probably had rheumatoid arthritis, lupus, or some other autoimmune disease, even though he literally had my positive Lyme blood test results in hand."
5
19
60