Long Lyme (PTLDS) here. Best of luck to you.
November 21, 2025 at 6:32 PM
Long Lyme (PTLDS) here. Best of luck to you.
NIH funds my friend’s Lyme disease research into why some people recover completely after a course of antibiotics while others develop post-treatment Lyme disease syndrome (PTLDS), in the hope of preventing or effectively treating PTLDS
January 28, 2025 at 8:44 PM
NIH funds my friend’s Lyme disease research into why some people recover completely after a course of antibiotics while others develop post-treatment Lyme disease syndrome (PTLDS), in the hope of preventing or effectively treating PTLDS
Justin Timberlake has announced he powered through his half-dead tour despite suffering from lyme disease. For it to last the whole tour suggests PTLDS. I personally wish he'd rested up until he is fully cured.
(Full Confession: I know PTLDS is incurable. I said what I said.)
(Full Confession: I know PTLDS is incurable. I said what I said.)
August 6, 2025 at 3:12 PM
Justin Timberlake has announced he powered through his half-dead tour despite suffering from lyme disease. For it to last the whole tour suggests PTLDS. I personally wish he'd rested up until he is fully cured.
(Full Confession: I know PTLDS is incurable. I said what I said.)
(Full Confession: I know PTLDS is incurable. I said what I said.)
PTLDS is absolutely real and often incorrectly labeled as Chronic Lyme by non-doctors.
Medically, "chronic lyme" isnt an accepted term but PTLDS *is*
Medically, "chronic lyme" isnt an accepted term but PTLDS *is*
January 11, 2025 at 5:55 PM
PTLDS is absolutely real and often incorrectly labeled as Chronic Lyme by non-doctors.
Medically, "chronic lyme" isnt an accepted term but PTLDS *is*
Medically, "chronic lyme" isnt an accepted term but PTLDS *is*
Vital listen.
My nan was told her #me/cfs was psychosomatic for years.
And friend Harry’s LC has developed into #ms/cfs.
PTLDS is similar in being dismissed/docs know nothing.
My nan was told her #me/cfs was psychosomatic for years.
And friend Harry’s LC has developed into #ms/cfs.
PTLDS is similar in being dismissed/docs know nothing.
QR Special: The cruelty of Long Covid
👩⚕️ The brutal physical, mental, emotional, social & professional impact
😳 HOW many affected?
🚑 The battle to be taken seriously
With @mrkennycampbell.bsky.social & Claire Higham
🎧 open.spotify.com/episode/1YGg...
🍎 podcasts.apple.com/us/podcast/t...
👩⚕️ The brutal physical, mental, emotional, social & professional impact
😳 HOW many affected?
🚑 The battle to be taken seriously
With @mrkennycampbell.bsky.social & Claire Higham
🎧 open.spotify.com/episode/1YGg...
🍎 podcasts.apple.com/us/podcast/t...
QR Special: The cruelty of Long Covid
open.spotify.com
March 28, 2026 at 10:28 AM
8) Similar symptoms were noted after endemic infections such as
- Chronic Epstein-Barr Virus (EBV):
- Post-treatment Lyme disease syndrome (PTLDS)
- Chikungunya-associated rheumatism
- Chronic Epstein-Barr Virus (EBV):
- Post-treatment Lyme disease syndrome (PTLDS)
- Chikungunya-associated rheumatism
December 9, 2025 at 8:47 AM
8) Similar symptoms were noted after endemic infections such as
- Chronic Epstein-Barr Virus (EBV):
- Post-treatment Lyme disease syndrome (PTLDS)
- Chikungunya-associated rheumatism
- Chronic Epstein-Barr Virus (EBV):
- Post-treatment Lyme disease syndrome (PTLDS)
- Chikungunya-associated rheumatism
PTLDS (post treatment Lyme disease syndrome) as well lol
August 15, 2025 at 4:04 PM
PTLDS (post treatment Lyme disease syndrome) as well lol
Healio: 'Lyme arthritis as post-acute infectious sequela: It’s real and it’s growing'
'We need research — lots of it — on PTLDS and all post-acute infectious syndromes (PAIS)...'
www.healio.com/news/rheumat...
'We need research — lots of it — on PTLDS and all post-acute infectious syndromes (PAIS)...'
www.healio.com/news/rheumat...
Lyme arthritis as post-acute infectious sequela: It’s real and it’s growing
In last month’s editorial — “Infection-Associated Chronic Conditions: Why Aren’t We Talking About These Disorders?” — I tried to stir the pot a bit.My goal was to d...
www.healio.com
August 25, 2025 at 4:12 PM
Healio: 'Lyme arthritis as post-acute infectious sequela: It’s real and it’s growing'
'We need research — lots of it — on PTLDS and all post-acute infectious syndromes (PAIS)...'
www.healio.com/news/rheumat...
'We need research — lots of it — on PTLDS and all post-acute infectious syndromes (PAIS)...'
www.healio.com/news/rheumat...
Folks with Chronic Lyme, two questions.
1) PTLDS or chronic Lyme?
2) flare, flare-up, crash, or PEM?
Feel free to pick more than one, pick a term that isn't here, and explain if there's a term that's a definite no/red flag!
@lymenews.bsky.social could you boost and/or comment?
1) PTLDS or chronic Lyme?
2) flare, flare-up, crash, or PEM?
Feel free to pick more than one, pick a term that isn't here, and explain if there's a term that's a definite no/red flag!
@lymenews.bsky.social could you boost and/or comment?
June 26, 2025 at 10:47 PM
Folks with Chronic Lyme, two questions.
1) PTLDS or chronic Lyme?
2) flare, flare-up, crash, or PEM?
Feel free to pick more than one, pick a term that isn't here, and explain if there's a term that's a definite no/red flag!
@lymenews.bsky.social could you boost and/or comment?
1) PTLDS or chronic Lyme?
2) flare, flare-up, crash, or PEM?
Feel free to pick more than one, pick a term that isn't here, and explain if there's a term that's a definite no/red flag!
@lymenews.bsky.social could you boost and/or comment?
1, chronic just because I wasn’t treated in the first place so PTLDS is inapplicable.
June 28, 2025 at 5:49 PM
1, chronic just because I wasn’t treated in the first place so PTLDS is inapplicable.
HLA
Human Leukocyte Antigen
genes
‘These findings support the hypothesis that
ME/CFS,
LONG COVID and
post-treatment Lyme disease syndrome PTLDS
are caused by
persistent pathogenic antigens
that could not be eliminated due to
inadequate protection by the patient’s HLA makeup’
Human Leukocyte Antigen
genes
‘These findings support the hypothesis that
ME/CFS,
LONG COVID and
post-treatment Lyme disease syndrome PTLDS
are caused by
persistent pathogenic antigens
that could not be eliminated due to
inadequate protection by the patient’s HLA makeup’
Viral persistence - the theory that ME/CFS relates to viruses persisting in the body - has been proposed for decades. US-based researchers proposed that this viral persistence may be something to do with HLA - a group of proteins found on almost every cell tinyurl.com/yzz75v56
#MEcfs #CFS #PwME
#MEcfs #CFS #PwME
![HLA MOLECULES & VIRAL PERSISTENCE IN ME/CFS & OTHER POST-INFECTIOUS CONDITIONS
viral fragment presented on HLA molecule
HLA molecule
viral infected cell fragments
Viruses in infected cells are broken down into fragments (viral antigens), which can be loaded onto human leukocyte antigen (H LA) molecules and presented on the cell surface. This signals to the immune system that the cell is infected and can be destroyed.
US-based researchers propose that in ME/CFS and certain other post-infectious conditions. HLA molecules bind viral antigens less effectively, therefore HLAs do not present the antigen effectively on the cell surface and thus don't appropriately alert the immune system.
This allows viral antigens to escape a response from the immune system, persist in the body (viral persistence) and continue driving symptoms. 17ra Georgopoulos, A.P. et at (2025). HLA and pathogens in myalgic encephalomyelitis/ l!,,r,17! chronic fatigue syndrome (ME/CFS) and other post-infection conditions. UK Scientific Reports, [online] 15(1). INFORM. INFLUENCE. INVEST. sc036942](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreibvp7uvnlvok2ca4jmislefwokfw2mipxmgpjbysruucptc56xeya)
December 16, 2025 at 6:48 PM
HLA
Human Leukocyte Antigen
genes
‘These findings support the hypothesis that
ME/CFS,
LONG COVID and
post-treatment Lyme disease syndrome PTLDS
are caused by
persistent pathogenic antigens
that could not be eliminated due to
inadequate protection by the patient’s HLA makeup’
Human Leukocyte Antigen
genes
‘These findings support the hypothesis that
ME/CFS,
LONG COVID and
post-treatment Lyme disease syndrome PTLDS
are caused by
persistent pathogenic antigens
that could not be eliminated due to
inadequate protection by the patient’s HLA makeup’
3) Den Dunnen's research focuses on diseases such as Long COVID, post-treatment Lyme disease syndrome (PTLDS), and Q fever fatigue syndrome (QFS). It will investigate autoantibodies in the blood and whether the immune system mistakenly attacks the body after an infection.
February 27, 2026 at 7:56 AM
3) Den Dunnen's research focuses on diseases such as Long COVID, post-treatment Lyme disease syndrome (PTLDS), and Q fever fatigue syndrome (QFS). It will investigate autoantibodies in the blood and whether the immune system mistakenly attacks the body after an infection.
the hypothesis that ME/CFS, long COVID and PTLDS are caused by persistent pathogenic antigens that could not be eliminated due to inadequate protection by the patient’s HLA makeup.
October 24, 2025 at 8:18 PM
the hypothesis that ME/CFS, long COVID and PTLDS are caused by persistent pathogenic antigens that could not be eliminated due to inadequate protection by the patient’s HLA makeup.
We found that the 2 #ME/CFS susceptibility #HLA alleles above had very weak binding with SARS-CoV-2 virus glycoprotein (involved in Long COVID) and 5 proteins of Borrelia burgdorferi (involved in PTLDS), in contrast to the ME/CFS protective alleles that showed strong bindings. These findings support
Fresh of publication in Nature
HLA and pathogens in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and other post-infection conditions
www.nature.com/articles/s41...
#ME/CFS #HHVs #HLA
HLA and pathogens in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and other post-infection conditions
www.nature.com/articles/s41...
#ME/CFS #HHVs #HLA
HLA and pathogens in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and other post-infection conditions - Scientific Reports
Scientific Reports - HLA and pathogens in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and other post-infection conditions
www.nature.com
October 24, 2025 at 8:18 PM
We found that the 2 #ME/CFS susceptibility #HLA alleles above had very weak binding with SARS-CoV-2 virus glycoprotein (involved in Long COVID) and 5 proteins of Borrelia burgdorferi (involved in PTLDS), in contrast to the ME/CFS protective alleles that showed strong bindings. These findings support
Floating All Boats… Iwasaki’s ME/CFS, Long COVID, and Lyme Disease Awards Promises New Insights into Post-Infectious Diseases #MECFS #LongCOVID #PTLDS #Lyme
www.healthrising.org/blog/2023/10...
www.healthrising.org/blog/2023/10...
October 31, 2023 at 6:24 PM
Floating All Boats… Iwasaki’s ME/CFS, Long COVID, and Lyme Disease Awards Promises New Insights into Post-Infectious Diseases #MECFS #LongCOVID #PTLDS #Lyme
www.healthrising.org/blog/2023/10...
www.healthrising.org/blog/2023/10...
As someone with PTLDS this makes me very apprehensive.
December 16, 2025 at 1:08 PM
As someone with PTLDS this makes me very apprehensive.
"Chronic Lyme" is complex and thorny. There’s no single definition. The CDC recognizes Post-Treatment Lyme Disease Syndrome (PTLDS) i.e persistent symptoms after treatment but not ongoing infection. Some use “chronic Lyme” to describe broader, lingering illness.
March 21, 2025 at 3:07 PM
"Chronic Lyme" is complex and thorny. There’s no single definition. The CDC recognizes Post-Treatment Lyme Disease Syndrome (PTLDS) i.e persistent symptoms after treatment but not ongoing infection. Some use “chronic Lyme” to describe broader, lingering illness.
It's the!non-scientifux term developed by people who weren't getting better but the CDC doesn't recognize it as a real diagnosis
after years of pressure they finally called it "post treatment Lyme disease syndrome" (PTLDS)
after years of pressure they finally called it "post treatment Lyme disease syndrome" (PTLDS)
December 12, 2024 at 2:24 PM
It's the!non-scientifux term developed by people who weren't getting better but the CDC doesn't recognize it as a real diagnosis
after years of pressure they finally called it "post treatment Lyme disease syndrome" (PTLDS)
after years of pressure they finally called it "post treatment Lyme disease syndrome" (PTLDS)
Clinical Trial Recruiting:
Lumbrokinase for Adults With Long Covid, Post-treatment Lyme Disease Syndrome, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
#mecfs #PTLDS #LongCovid #PAIS #pwME clinicaltrials.gov/study/NCT065...
Lumbrokinase for Adults With Long Covid, Post-treatment Lyme Disease Syndrome, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
#mecfs #PTLDS #LongCovid #PAIS #pwME clinicaltrials.gov/study/NCT065...
ClinicalTrials.gov
clinicaltrials.gov
July 13, 2025 at 3:07 PM
Clinical Trial Recruiting:
Lumbrokinase for Adults With Long Covid, Post-treatment Lyme Disease Syndrome, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
#mecfs #PTLDS #LongCovid #PAIS #pwME clinicaltrials.gov/study/NCT065...
Lumbrokinase for Adults With Long Covid, Post-treatment Lyme Disease Syndrome, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
#mecfs #PTLDS #LongCovid #PAIS #pwME clinicaltrials.gov/study/NCT065...
In North America, Lyme disease can cause damage to the knee or facial nerves, which can be long-lasting.
The PTLDS definition encompasses non-specific symptoms that persist.
However Lyme is heavily overdiagnosed and symptoms are often misattributed to it. So PTLDS can often be ruled out.
The PTLDS definition encompasses non-specific symptoms that persist.
However Lyme is heavily overdiagnosed and symptoms are often misattributed to it. So PTLDS can often be ruled out.
May 29, 2026 at 11:38 PM
In North America, Lyme disease can cause damage to the knee or facial nerves, which can be long-lasting.
The PTLDS definition encompasses non-specific symptoms that persist.
However Lyme is heavily overdiagnosed and symptoms are often misattributed to it. So PTLDS can often be ruled out.
The PTLDS definition encompasses non-specific symptoms that persist.
However Lyme is heavily overdiagnosed and symptoms are often misattributed to it. So PTLDS can often be ruled out.
woah, did you know Lyme disease is treatable with antibiotics? I always thought it was inherently chronic, but that's a different diagnosis called PTLDS! LD can cause rashes, stiffness, and partial facial paralysis! while PTLDS is stuff like brain fog and fatigue, occuring in up to 20% of patients 🕯️
January 21, 2026 at 6:08 PM
woah, did you know Lyme disease is treatable with antibiotics? I always thought it was inherently chronic, but that's a different diagnosis called PTLDS! LD can cause rashes, stiffness, and partial facial paralysis! while PTLDS is stuff like brain fog and fatigue, occuring in up to 20% of patients 🕯️
There’s some hope that attention brought to symptoms that persist after COVID can also help people with symptoms after other infections including Lyme.
The conclusion from PTLDS studies are that long-term antibiotics are not considered helpful for PTLDS and may cause harm.
The conclusion from PTLDS studies are that long-term antibiotics are not considered helpful for PTLDS and may cause harm.
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pmc.ncbi.nlm.nih.gov
May 29, 2026 at 11:41 PM
There’s some hope that attention brought to symptoms that persist after COVID can also help people with symptoms after other infections including Lyme.
The conclusion from PTLDS studies are that long-term antibiotics are not considered helpful for PTLDS and may cause harm.
The conclusion from PTLDS studies are that long-term antibiotics are not considered helpful for PTLDS and may cause harm.
As of today the Bourgeois Lab has been award a DoD CDMRP TBDRP Idea award to identify a genetic basis for severe acute Lyme disease and PTLDS using the novel “msHOST” platform. This award has an emphasis on “career development” and will help the Bourgeois Lab find its footing in the field.
June 27, 2025 at 7:55 PM
As of today the Bourgeois Lab has been award a DoD CDMRP TBDRP Idea award to identify a genetic basis for severe acute Lyme disease and PTLDS using the novel “msHOST” platform. This award has an emphasis on “career development” and will help the Bourgeois Lab find its footing in the field.
My friend has Post-Treatment Lyme Disease Syndrome (PTLDS) and is struggling to cope with it. There is also an apparent lack of help and support
Plea: If you know of anything that could help, please do let me know
Many thanks 😊
Plea: If you know of anything that could help, please do let me know
Many thanks 😊
June 12, 2025 at 2:34 AM
My friend has Post-Treatment Lyme Disease Syndrome (PTLDS) and is struggling to cope with it. There is also an apparent lack of help and support
Plea: If you know of anything that could help, please do let me know
Many thanks 😊
Plea: If you know of anything that could help, please do let me know
Many thanks 😊
The NIH supports the term PTLDS or Post Treatment Lyme Disease Syndrome as opposed to Chronic Lyme because it's a more accurate representation of the condition and recommended treatment options.
![A tweet from HHS rapid response, a press conference featuring the new actin surgeon general Stephanie Haridopolos. A white woman with blonde hair at a lectern.
Dr. Haridopolos, Director of National Health Communications for
@Surgeon_General
, lays out the scope of America’s tick and Lyme disease problem ⬇️
“31 million people get bit by ticks per year in the United States.”
“Not all of them get Lyme disease but we know [at least] half a million do.”
“20% of those who get Lyme disease go onto chronic, persistent Lyme disease that has autoimmune dysfunction and inflammation in their body that can take years to rectify.”](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:c3roikkeki4hxu2gz7r5pljd/bafkreigobvh74iqne4nvc6334rp235pcmmzimzqddogskl4krbrpaf2mnu)
May 29, 2026 at 8:35 PM
The NIH supports the term PTLDS or Post Treatment Lyme Disease Syndrome as opposed to Chronic Lyme because it's a more accurate representation of the condition and recommended treatment options.