#post treatment lyme disease

[lifewithchronicpain]

Researchers at Johns Hopkins University have documented changes in the brains of patients with post-treatment Lyme disease that may explain symptoms such as brain fog, memory loss and other cognitive issues. The finding could also have implications for patients with fibromyalgia, multiple sclerosis, chronic fatigue and other health conditions who have cognitive problems.

Lyme disease is a bacterial illness spread by ticks that causes a rash, flu-like aches and fever, joint pain and fatigue. Most patients fully recover when treated early with antibiotics, but up to 20% of those with post-treatment Lyme disease (PTLD) have long-term symptoms, including depression, insomnia and cognitive difficulties. There is usually no clinical or laboratory evidence to explain their ongoing issues.

“Objective biologic measures of post-treatment Lyme symptoms typically can’t be identified using regular MRIs, CT scans, or blood tests,” says John Aucott, MD., director of the Johns Hopkins Lyme Disease Clinical Research Center.

Aucott and his colleagues recruited 12 PTLD patients and 18 people without a history of Lyme to undergo functional MRI (fMRI) scans while performing a short-term memory task. The scans allow investigators to track blood flow and other changes in the brain in real time.

Their findings, published in the journal PLOS ONE, linked the cognitive difficulties in PTLD patients to functional and structural changes in the “white matter” of the brain, which is crucial for processing and relaying information. The imaging tests revealed unusual activity in the frontal lobe, an area of the brain responsible for memory recall and concentration. That finding correlated to patients with post-treatment Lyme needing longer periods of time to complete the memory task.

“We saw certain areas in the frontal lobe under-activating and others that were over-activating, which was somewhat expected,” said lead author Cherie Marvel, PhD, an associate professor of neurology at Johns Hopkins. “However, we didn’t see this same white matter activity in the group without post-treatment Lyme.” (Read more at link)

[afeelgoodblog]

The Best News of Last Week

🦾 - High-Five for Bionic Hand

1. Houston-area school district announces free breakfast and lunch for students

Pasadena ISD students will be getting free breakfast and lunch for the 2023-24 school year, per an announcement on the district's social media pages.

The 2023-24 free lunch program is thanks to a Community Eligibility Provision grant the district applied for last year. The CEP, which is distributed by the Department of Agriculture, is specially geared toward providing free meals for low-income students.

2. Dolphin and her baby rescued after being trapped in pond for 2 years

A pair of dolphins that spent nearly two years stuck in a Louisiana pond system are back at sea thanks to the help of several agencies and volunteers.

According to the Audubon Nature Institute, wildlife observers believe the mother dolphin and her baby were pushed into the pond system near Grand Isle, Louisiana, during Hurricane Ida in late August 2021.

3. Studies show that putting solar panels over waterways could boost clean energy and conserve water. The first U.S. pilot project is getting underway in California.

Some 8,000 miles of federally owned canals snake across the United States, channeling water to replenish crops, fuel hydropower plants and supply drinking water to rural communities. In the future, these narrow waterways could serve an additional role: as hubs of solar energy generation.

4. Gene therapy eyedrops restored a boy's sight. Similar treatments could help millions

Antonio was born with dystrophic epidermolysis bullosa, a rare genetic condition that causes blisters all over his body and in his eyes. But his skin improved when he joined a clinical trial to test the world’s first topical gene therapy.

The same therapy was applied to his eyes. Antonio, who’s been legally blind for much of his 14 years, can see again.

5. Scientists develop game-changing vaccine against Lyme disease ticks!

A major step in battling Lyme disease and other dangerous tick-borne viruses may have been taken as researchers announced they have developed a vaccine against the ticks themselves.

Rather than combatting the effects of the bacteria or microbe that causes Lyme disease, the vaccine targets the microbiota of the tick, according to a paper published in the journal Microbiota on Monday.

6. HIV Transmission Virtually Eliminated in Inner Sydney, Australia

Sydney may be the first city in the world to end AIDS as a public health threat by 2030. Inner Sydney has reduced new HIV acquisitions by 88%, meaning it may be the first locality in the world to reach the UN target to end AIDS as a public health threat by 2030

7. New bionic hand allows amputees to control each finger with unprecedented accuracy

In a world first, surgeons and engineers have developed a new bionic hand that allows users with arm amputations to effortlessly control each finger as though it was their own body.

Successful testing of the bionic hand has already been conducted on a patient who lost his arm above the elbow.

----

That's it for this week :)

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[promptsforyourwhumpfic]

The Grand A-Z List of Whump 2/3

This list contains ~174 items listed I to Q

As always, I heavily encourage people to research topics thoroughly when writing. Whump is generally a 'dead dove' sort of topic, however it is important to avoid stereotypes/misinformation. This lists intention is to not glorify/romanticise sensitive topics in any way.

This is a comprehensive list of injuries, Illnesses and tropes - including those from the Whumptober 2023 trope vote!

All submissions are listed in italics, and those who wanted to be tagged will be included at the end. If you have any more submissions: please send them via DM/my ask box.

[A-H] [R-Z] [NSFW List]

List below the cut:

I

ICU

Identity reveal

Ignorance is Bliss

Ignoring an Injury

Immersion foot syndromes (Prolonged exposure to damp and cold)

Immobilization

Immortal healed wrong

Immunodeficiency

Impalement

Improvised medicine/treatment

Indigestion

Infected (Blood, Wound, Tattoo etc)

Infested

Injured caretaker carrying an even more injured whumpee.

Injured whumpee instructs caretaker how to treat them.

Injury Discovery

Injury Revelation

Insecurity

Insomnia

Insults

Internal Bleeding

Interrogation

Interventions

Intimate whumper

Intubation

Involuntary whumper

Isolation

Isolation/Quarantine

Itching

J

Jailed

Jamais vu (The experience of being unfamiliar with a person or situation that is actually very familiar.)

Jealousy

Jet Lag

Jumping (to safety, forced to jump)

Just dying in general.

K

Keeping quiet because the enemy is nearby

Keeping the whumpee awake

Ketosis (body burning fat for energy)

Kidnapped by the opposing team

Kidnapping

Kidney Stones

Killed! (Again and again and again for the lovely immortal whumpees<;3)

Kneeling

Knife through hand and into wall/floor

Knocked Out

L

Lab Rat

Laryngitis

Late realisation

Left for dead

Leprosy

Lichenberg scars/Lightning strike

Limited Medical Supplies

Live-Streamed/Broadcast torture

Lobotomy

Locked Up and Left Behind

Losing a Bet

Loss of appetite

Loss of reality

Lost (In the woods, city etc)

Lost voice

Low Blood Pressure

Lumbago (lower back pain)

Lupus

Lured into a trap

Lying

Lyme's disease

Lymphoma

M

Magical exhaustion

Magical healing

Magic whump (using spells to harm someone)

Manhandling

Major Character Death

Makeshift Splints

Malaria

Malnutrition

Manhandling

Mauled

Measles

Medical trauma

Medieval Torture

Memory Loss

Meningitis

Menstrual Cramps

Mental illness after being kidnapping (and addressing it)

Migraine

Military lovers

Military whump

Mind control/Manipulation

Miscommunication

Missing

Missing Person

Mistaken Identity

Misunderstanding

Mono

Mopping a sweaty brow with a cool cloth

Mudslides

Muffled Scream

Mugging

Multiple Sclerosis

Multiple Whumpees

Multiple Whumpers

Mumps

Muscular Atrophy

Mute

Muzzled

N

Nailed to a wall or floor

Nails digging into palms

Nail marks left in the whumpees skin

Natural Disasters

Nausea

Near-Death Experience

Necrosis

Neglect

Nerve damage

Nerve pain

Nightmares

No anesthesia

No goodbyes

Non-responsiveness

Nonhuman whumpee

Not allowed to die

Not Realizing They’re Injured

Nowhere else to go

Noxious (gas/fumes)

Numb

Numbness/Paralysis

O

Obsession (with finishing the mission, the whumper obsessed with the whumpee etc)

Open Fracture

Orthostatic hypotension (low blood pressure when standing)

Osteogenesis Imperfecta (brittle bone disease)

Outnumbered

Overdose

Overworked

Oxygen Deprivation

Oxygen Mask

P

Packing a wound

Panic attacks

Paralysis (this could be temporary or permanent)

Paranoia

Parent caring for sick child

Parkinson's

Passing out from pain

Passing out in arms

Permanent injuries that affect them long term

Phantom pain

Phobias (could lead to character stumbling and hurting themselves in an attempt to escape their fear)

Photographs/Polaroids ( Especially if they're of the kidnapped whumpee)

Physical Therapy

Piercing ripped out

Pinched nerve

Pinned Down/To The Wall

Plague

PMS

Pneumonia

Pneumothorax

Poisoning

Polio

Possession/possession recovery

Post-exertional malaise

Post-ictal confusion/any other symptoms (after a seizure)

POTS (Postural Orthostatic Tachycardia Syndrome)

Power Fatigue

Praise (especially if it's from the whumper)

Pregnancy (morning sickness, self-conscious, hot flushes, tired and sleepy, general malaise, swollen feet, weird cravings...)

Presumed dead

Prisoner Exchange

Protecting friend from the whumpees own team (bonus points if doing it while injured)

Psychological Torture

Psychological Whump

Psychosis

PTSD

Pulled Muscles

Puncture Wounds

Q

Q-Fever

TAG LIST: Thank you very much to the following people for submitting ideas! (I apologise if some tags did not work, I'm not sure why tumblrs not letting me tag you!)

@I-eat-worlds | @greygullhaven | @letsgowhump | @cyberwhumper @firapolemos05 | @originaldeerhottub | @whumpilicious | @drawing-dinos82 | @carenrose | @stellarinuscronicles | @gottheseasonalblues | @marvelflame2010 | @sowhumpful | @avamcu | @courtneygacha | @lordofthewhumps | @autismmydearwatson | @kuddelmuddell | @the-most-handsome-ginger | @whirls-and-swirls | @painsandconfusion

[phopollo]

Oh yeah, hey, so

Quick update;

Negative stuff first because I'm a complainer;

-I'm still being crushed by my workload for my art classes (between two of them I need to complete 3 full pieces for my Monday class, and 1 & a half for the Tuesday class at the time of posting) ((it should absolutely not be this much work, I am in beginning art classes))

-computer is still broken, and now the consequences of only drawing on my phone for years straight is catching up and my hand hurts too (I am currently trying to teach myself to become ambidextrous to combat this at least a little)

-Im also in that place where I just don't like how anything is coming out

And

-being diseased is still kicking my butt, I am coming out of the depths of a roughly a week long lasting migraine that I did not recognize was a migraine until yesterday because its not the migraine symptoms I've had before, also some of my treatment plan slipped through the cracks and my lyme disease is getting worse again

But!

There's some positive stuff too, because even though I'm a complainer, I like to find good in stuff;

-There is an end date in sight for one of my medical problems! By this time next month I will be easing off of the medical diet I'm currently on because my stomach should be fully healed, but we're taking it slow just to be safe

-In theory, fixing my computer won't be expensive for us because it's a likely a manufacturing problem and it's still under warranty

And

-I know I'll get past the place I'm in with my art currently, and when I do I'll be making some really cool stuff, because that's what always happens!

So

I'll probably be

A little slow, and/or posting a bit less than usual for a bit longer,,,,,

But when I come back, ill come back swinging!

[moonygryffin]

Was going to include this in the tags of my last post since it’s just more context on why I’m so happy I’m able to write again but I feel like it’s important information people should know about

One of the many, many possible things Lyme disease can do is perfectly mimic adhd. Like, so perfectly you can’t (or at least shouldn’t) be diagnosed with adhd while you have Lyme. Personally, I had to go to a specific psychologist to get diagnosed because I had had Lyme for so long at the time that it they had to check whether it was actual adhd or lingering side effects from Lyme. The only difference between the two is that Lyme disease mimicking adhd isn’t effected by any adhd treatments. Which can be double trouble if you have both Lyme AND adhd. If you have both then it can seem like your adhd meds just stop working and if you need them to be able to focus on specific tasks, like writing, then you’re out of luck.

So if you have Lyme and it seems like you’ve suddenly developed adhd, it could be the Lyme mimicking it. If you have adhd and suddenly your meds suddenly stop working, it could potentially be Lyme disease. This is just another possible sign of Lyme disease for people to be aware of

Also it can give you ocd. Not an ocd mimic, it can just straight up give you permanent ocd. That’s how I got it

[dontmeantobepoliticalbut]

Just before 7 am on March 3, Danny Lemoi posted an update in his hugely popular pro-ivermectin Telegram group, Dirt Road Discussions: “HAPPY FRIDAY ALL YOU POISONOUS HORSE PASTE EATING SURVIVORS !!!”

Hours later, Lemoi was dead.

For the last decade, Lemoi had taken a daily dose of veterinary ivermectin, a dewormer designed to be used on large animals like horses and cows. In 2021, as ivermectin became a popular alternative COVID-19 treatment among anti-vaxxers, he launched what became one of the largest Telegram channels dedicated to promoting the use of it, including instructions on how to administer ivermectin to children.

But despite Lemoi’s death, the administrators of his channel are pushing his misinformation—even as his followers share their own worrying possible side effects from taking ivermectin and some question the safety of the drug.

Lemoi, a heavy equipment operator who lived in Foster, Rhode Island, “passed away unexpectedly” on March 3, according to an online obituary post by his family last week. He was survived by his parents and brother. The obituary gave no details about the cause of his death.

In the Telegram channel, administrators broke the news of his death to his followers. “Though it was obvious that Danny had the biggest heart, it was unbeknownst to him that his heart was quite literally overworking and overgrowing beyond its capacity, nearly doubled in size from what it should have been,” the admins wrote, adding: “We understand that this is going to raise questions for those who were following him.”

The admins added that Lemoi had undergone testing on his heart last year, but the results had shown no cause for concern.

Lemoi began taking the version of ivermectin designed for animals on a daily basis in 2012, after he was diagnosed with Lyme disease, according to a detailed account of his medical history he gave on a podcast last November. He said then that five months after first taking the drug, he quit all other treatments and believed ivermectin had “regenerated” his heart muscle.

During the pandemic, Ivermectin became hugely popular among anti-vaxxers, many of whom were taking and recommending the veterinary formulation of the drug, rather than the one designed for human use. While ivermectin for humans is used to treat serious illnesses like river blindness, it has repeatedly been shown to be an ineffective treatment for COVID-19.

And according to the Missouri Poison Center, ingesting large doses of ivermectin formulated for animals has a long list of side effects, including seizures, coma, lung issues, and heart problems. Veterinary ivermectin is not a cure or effective treatment for COVID, the FDA has repeatedly warned, and is highly concentrated because it is designed for large animals like horses and cows. “Such high doses can be highly toxic in humans,” the FDA cautions.

“Danny was fully convinced that his heart had regenerated after his incident with Lyme disease that almost ended in congestive heart failure,” the admins wrote, before claiming that “a family history of heart disease and chronic stress” were why his heart had ultimately become engorged. “All of his other organs were unremarkable,” the admins wrote. “And this was determined to be a death by unfortunate natural causes.”

The admins of Lemoi’s channel did not respond to VICE News’ questions about where they got their information about his death. Lemoi’s surviving family did not respond to VICE News' request for comment on the cause of his death.

But a review of Lemoi’s Telegram channels shows that many of his followers who are taking his dosage recommendations, or “protocols,” for veterinary ivermectin are experiencing numerous known side effects of taking the drug.

“I’m 4 months now and all hell’s breaking loose, all pain has hit my waist down with sciatic, shin splints, restless leg syndrome, tight sore calves & it feels like some pain in the bones,” a member wrote on Friday.

Lemoi explained away the negative side effects of taking veterinary ivermectin by describing them as “herxing,” a real term to describe an adverse response that occurs in people who take antibiotics as a treatment for Lyme disease.

“My wife has been taking ivermectin for 3 months,” a member wrote Friday. “She is being treated for autoimmune hepatitis, thyroid, and vertebrae issues. She has had some serious HERXING. Today she has a migraine, vomiting and severe stomach pain. Does anyone have any ideas how to help, and are these HERXING symptoms?”

Some members of the group are taking ivermectin not only as a treatment against COVID, but as a cure-all for almost every disease—from cancer and depression, to autism and ovarian cysts—believing that every disease is caused by a parasite that is removed from the body by ivermectin, just as animals are given the drug to treat parasitic worms like tapeworm.

Lemoi also formulated an ivermectin regimen for children, and numerous members of the group reported that they were using it. This week alone one member wrote that she had established another group for “parents of children on the spectrum, cerebral palsy, pans/panda, downs etc.,” who are using the Lemoi’s recommended children’s dosage.

When some members of the group blamed Lemoi’s death on ivermectin, they were criticized in the Telegram channel; their fellow group members claimed they were spreading misinformation.

​​“No one can convince me that he died because of ivermectin,” one member wrote this week. “He ultimately died because of our failed western medicine which only cares about profits and not the cure.”

Despite Lemoi’s death, administrators said this week the Telegram channel would live on, and the group is attracting new members who continue to take ivermectin despite suffering serious side effects.

“I am very new to this... I’ve been on Bimectin paste for 20 days,” one new member wrote on Friday morning, explaining that he too was suffering from Lyme disease. “I have severe chest pain. Costochondritis symptoms. Air hunger, internal tremors, brain fog, headaches on the back of my head, anxiety, depression, doom and gloominess.”

Oh...just remembering all the MAGA freaks on here that were foaming at the mouth over ivermectin and wondering why @staff never gave us a "report medical misinformation" option...

[halevetica]

To all my readers!! Here is an update for you about my health and when I'll be posting again!

Doctor's are pretty sure I'm not gonna keel over, so they've given up on me for now and just upped my heart meds. Still can't get proper treatment for the Lyme disease, but what else is new. At least now I should be able to stay out of the hospital.

Anyway, I have been slowly chipping away at these chapters. I'm almost done with one! I'm halfway through the other. So I'll definitely have one posted next week. Hopefully, on Monday.

Thank you all for your sweet messages and your patience! It really means the world to me!! 💚

[livebloggingmydescentintomadness]

What's chronic Lyme disease? Google isn't being helpful, and I'm having trouble finding anything you've already posted about it :)

that's alright, i haven't talked about it in a long time so any explanation is probably buried in my archives.

in short: lyme disease presents in two different ways - acute and chronic.

in acute cases, a person gets infected and within days presents with symptoms, leading (hopefully) to them being treated quickly with antibiotics and more-or-less permanently cured. (even when the lyme is cured, it can still leave behind some issues.)

however, there are other times when a person gets infected and instead of immediately causing symptoms, the spirochetes (the type of bacteria that causes lyme) incubate for weeks, months, or years. at some point quite a ways after the initial infection, when you might have actually seen a tick or a rash on your body, you begin to slowly develop mysterious symptoms.

by that point you've probably long forgotten about the tick or rash, if you have saw/had one (only about 50% of cases develop the classic bullseye rash, and lyme can be spread from person to person, not just through ticks), so when you go to the doctor and tell them shit's fucked, you probably don't think to tell them "by the way i saw a tick on my leg five years ago".

so the doctors run tests, and either say "nothing wrong with you, sorry", pawn you off on another specialist to run more tests, or diagnose you with something else with similar symptoms. regardless, you keep getting worse, and maybe, hopefully, someday, someone thinks to run a different test, and guess fucking what. lyme disease.

the issue here is that antibiotics are the only formally approved treatment for lyme disease, but when the bacteria have had years to spread and entrench themselves throughout your entire body, they can't be wiped out nearly as well as bacteria that are fresh on the scene. personally, i was on six week regimens of antibiotics for an entire year, and every single time they tested my blood, it still came back positive for lyme.

but the real reason it's a shitshow is that, for a lot of very stupid reasons, a lot of institutions refuse to acknowledge that chronic lyme is actually a real thing that exists. the cdc's position is that chronic lyme isn't real. i've heard a real doctor say the words, "antibiotics cure lyme disease, so it's not lyme disease," regardless of the fact that people like me can show the blood tests proving we still have active lyme after completing antibiotics. (this of course means that you can't qualify for disability support, because your disability isn't "real".)

so most of us have to go our own way, trying to find solutions apart from official guidelines, because there are none. there are some doctors out there doing really good work (we call them llmd, or lyme-literate doctors), but you still have to read books, buy expensive supplements, try new therapies, treat your symptoms as best you can... all while being extremely ill and in pain.

lyme disease can attack every single organ and system in your body, from your brain to your joints to your heart to your gut, and it can absolutely end up fatal if left unchecked. the spirochetes responsible are terrifyingly adaptable and hard to kill, and a lot of us will probably never be fully healthy again.

at least 300,000 people are diagnosed with lyme in the usa every year. it's a serious problem and more people need to know about it.

[disabilityshowdown]

I don’t wanna start drama with this but the legitimisation of chronic Lyme as a diagnosis harms disabled people. There’s no evidence it exists (and plenty it doesn’t) but it’s still used to justify dangerous and inappropriate long term antibiotic treatment for people who have no bacterial infection but do have conditions such as fibromyalgia and chronic fatigue. I don’t think Cecil mentions having post Lyme fibromyalgia or chronic fatigue but if he does please use that instead of chronic Lyme.

i have no idea either honestly (on cecil having it, if it's mentioned more than once i did not get that far into the podcast)

i used chronic lyme disease bc at least three people used that term, and with a quick google i didn't find anything to suggest that term shouldn't be used, but thanks for the heads up!

[headspace-hotel]

Chronic lyme is getting investigated officially now. It is frequently used as a quack diagnosis by medical grifters and is commonly thought of as a disease that isn't real. I believe grifters will use real and fake diagnoses to grift. It is frequently thought of as psychosomatic. There is a plausible route to chronic lyme, as opposed to something fake like 5g sensitivity.

I have no clue the quality of studies done on chronic lyme, or what the CDC talks about- post treatment lyme disease syndrome. I have no skin in the game. I am explaining this only so that the op gets an update.

Everyone is certain that developing a red meat allergy after tick bite is real though

Yeah...it's awful how "alternative medicine" whackos take advantage of people who are in pain and sick of being accused of lying by doctors, the very people who are supposed to help them.

[deathsbestgirl]

so some of my medical history:

lyme disease when i was 10

mono right after (one kid i was never near in the county had it)

a weird ass contagious skin disease that was very contagious so i couldn't go to school (easily treatable) that no one else in the county had

diagnosed with a type of arthritis when i was 15 (the "treatment" didn't help)

i've had 4 surgeries for cysts (ganglion cysts both wrists, left side lypoma, cholestiatoma in my left ear)

tubes in my ears 3 times

2 surgeries to replace the bone in my left ear (i'm HOH)

MRSA my freshman year of college (not allowed at school)

junior year? i started getting treated for chronic lyme (controversial) was on multiple antibiotics for 4 years, went gluten free, no sugar, very little caffeine, got cdif (colitis) (almost died) had to stop that route. tried chinese medicine (garlic & herbs) was taking chlorophyll with too much copper, got copper poisoning & almost died (when my dad was first diagnosed with cancer no less) stopped that course too. (also did a whole miserable diet that i can't even talk about bc i really like food & that also almost killed me bc i didn't want to eat ever)

did acupuncture for years, that was the MOST helpful. she improved my period, helped make my diet tolerable, improved my pain & migraines by leagues, etc etc

pretty sure i have pots, maybe eds but i haven't tried to get diagnosed because ... i hate doctors with a burning passion. my biggest problem now is fainting & allergies lol and liquid iv & compression socks have actually made the biggest difference. used to survive on gatorade & pedialyte. and i need to go back to acupuncture

i'm always in pain (muscles, joints literally all of them) but you learn to live with it. and my very helpful doctors told me to ignore that pain when i was 15 & said fatigue was normal. so um. yeah

i feel like i've buried most of the memories, like they were years ago at this point but they feel like another life sometimes.

it's so isolating and if i didn't have two really good friends at home when i left college, i don't know how i would have made it. they would come over basically everyday and we'd watch tv & hang out, they'd make sure i ate & help me clean etc etc (i had the downstairs apartment if my parents house most of the time and *thankfully* my family was always helpful & understanding, my mom fought so hard for me) my mom & my friends could tell how i was feeling without my having to saying a word about it.

it absolutely kills me every time i read about what others deal with when they have chronic illnesses because that just. is not how anyone should be treated when they're sick & in pain. i remember being 15 and the whole world telling me "you can't be sick all the time" like literally yes you can you dumb fucks. again, thankfully i had some great teachers who made so many allowances for me (letting someone leave class early with me because i couldn't walk or carry my stuff but i had no aids or plan with the school. sometimes teachers that weren't even mine let a friend leave their class. one teacher didn't make me read a tale of two cities because i missed the whole unit) i had another friend going through hell. she has crohn's disease and she almost went blind and it took a long time for her to get diagnosed too.

one of those days i'm just mad at the world. this post doesn't really have any purpose other than to say listen to disabled people, especially the ones in your life. and if you can help them then you should. it's isolating & exhausting & painful in so many ways. people shouldn't lose friends because of their health. they shouldn't be guilted because of their health. health isn't an achievement, it isn't something you can control even if you do everything you possibly can. some things we just have to live with.

[cassowariess]

Though addendum to that post I just reblogged: I know two people who went to do some entomological fieldwork in the Lake District. They got bitten all over their backs by ticks. One guy got treatment early and was fine. The other now has Lyme Disease for life. :( Boots aren't a failsafe. Get treatment as soon as you find out a tick has bitten you.

[rockislandadultreads]

National Book Award Finalists: Nonfiction

Have you read any of these National Book Award Finalists? These nonfiction selections were chosen out of 607 submissions! There are also finalists for fiction, poetry, translated literature, and young people's literature - be sure to check out the full list here.

The Invisible Kingdom by Meghan O’Rourke

A silent epidemic of chronic illnesses afflicts tens of millions of Americans: these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. Renowned writer Meghan O’Rourke delivers a revelatory investigation into this elusive category of “invisible” illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVID, synthesizing the personal and the universal to help all of us through this new frontier. Drawing on her own medical experiences as well as a decade of interviews with doctors, patients, researchers, and public health experts, O’Rourke traces the history of Western definitions of illness, and reveals how inherited ideas of cause, diagnosis, and treatment have led us to ignore a host of hard-to-understand medical conditions, ones that resist easy description or simple cures. And as America faces this health crisis of extraordinary proportions, the populations most likely to be neglected by our institutions include women, the working class, and people of color.

South to America by Imani Perry

We all think we know the South. Even those who have never lived there can rattle off a list of signifiers: the Civil War, Gone with the Wind, the Ku Klux Klan, plantations, football, Jim Crow, slavery. But the idiosyncrasies, dispositions, and habits of the region are stranger and more complex than much of the country tends to acknowledge. In South to America, Imani Perry shows that the meaning of American is inextricably linked with the South, and that our understanding of its history and culture is the key to understanding the nation as a whole. This is the story of a Black woman and native Alabaman returning to the region she has always called home and considering it with fresh eyes. Her journey is full of detours, deep dives, and surprising encounters with places and people. She renders Southerners from all walks of life with sensitivity and honesty, sharing her thoughts about a troubling history and the ritual humiliations and joys that characterize so much of Southern life.  Weaving together stories of immigrant communities, contemporary artists, exploitative opportunists, enslaved peoples, unsung heroes, her own ancestors, and her lived experiences, Imani Perry crafts a tapestry unlike any other.

Breathless by David Quammen

Breathless is the story of SARS-CoV-2 and its fierce journey through the human population, as seen by the scientists who study its origin, its ever-changing nature, and its capacity to kill us. David Quammen expertly shows how strange new viruses emerge from animals into humans as we disrupt wild ecosystems, and how those viruses adapt to their human hosts, sometimes causing global catastrophe. He explains why this coronavirus will probably be a “forever virus,” destined to circulate among humans and bedevil us endlessly, in one variant form or another. As scientists labor to catch it, comprehend it, and control it, with their high-tech tools and methods, the virus finds ways of escape. Based on interviews with nearly one hundred scientists, including leading virologists in China and around the world, Quammen explains that infectious disease experts saw this pandemic coming; some scientists, for more than two decades, warned that “the next big one” would be caused by a changeable new virus - very possibly a coronavirus - but such warnings were ignored for political or economic reasons; the precise origins of this virus may not be known for years, but some clues are compelling, and some suppositions can be dismissed; and much more.

The Man Who Could Move Clouds by Ingrid Rojas Contreras 

For Ingrid Rojas Contreras, magic runs in the family. Raised amid the political violence of 1980s and '90s Colombia, in a house bustling with her mother's fortune-telling clients, she was a hard child to surprise. Her maternal grandfather, Nono, was a renowned curandero, a community healer gifted with what the family called "the secrets" - the power to talk to the dead, tell the future, treat the sick, and move the clouds. And as the first woman to inherit "the secrets," Rojas Contreras' mother was just as powerful. Mami delighted in her ability to appear in two places at once, and she could cast out even the most persistent spirits with nothing more than a glass of water. This legacy had always felt like it belonged to her mother and grandfather, until, while living in the U.S. in her twenties, Rojas Contreras suffered a head injury that left her with amnesia. As she regained partial memory, her family was excited to tell her that this had happened before: Decades ago Mami had taken a fall that left her with amnesia, too. And when she recovered, she had gained access to "the secrets." In 2012, spurred by a shared dream among Mami and her sisters, and her own powerful urge to relearn her family history in the aftermath of her memory loss, Rojas Contreras joins her mother on a journey to Colombia to disinter Nono's remains. With Mami as her unpredictable, stubborn, and often hilarious guide, Rojas Contreras traces her lineage back to her Indigenous and Spanish roots, uncovering the violent and rigid colonial narrative that would eventually break her mestizo family into two camps: those who believe "the secrets" are a gift, and those who are convinced they are a curse.

His Name is George Floyd by Robert Samuels & Toluse Olorunnipa

The events of that day are now tragically familiar: on May 25, 2020, George Floyd became the latest Black person to die at the hands of the police, murdered outside of a Minneapolis convenience store by white officer Derek Chauvin. The video recording of his death set off a series of protests in the United States and around the world, awakening millions to the dire need for reimagining this country's broken systems of policing. But behind a face that would be graffitied onto countless murals, and a name that has become synonymous with civil rights, there is the reality of one man's stolen life: a life beset by suffocating systemic pressures that ultimately proved inescapable. This biography of George Floyd shows the athletic young boy raised in the projects of Houston's Third Ward who would become a father, a partner, a friend, and a man constantly in search of a better life. In retracing Floyd's story, Washington Post reporters Robert Samuels and Toluse Olorunnipa bring to light the determination Floyd carried as he faced the relentless struggle to survive as a Black man in America. Placing his narrative within the larger context of America's deeply troubled history of institutional racism, His Name Is George Floyd examines the Floyd family's roots in slavery and sharecropping, the segregation of his Houston schools, the overpolicing of his communities, the devastating snares of the prison system, and his attempts to break free from drug dependence - putting today's inequality into uniquely human terms. Drawing upon hundreds of interviews and extensive original reporting, Samuels and Olorunnipa offer a poignant and moving exploration of George Floyd's America, revealing how a man who simply wanted to breathe ended up touching the world.

[patient-education]

X-Plain New and Updated Topics

The Patient Education Institute has published, reviewed or updated 91 titles in Q1 and Q2 2023. We provide each topic in 5 instructional formats (tutorial, video, illustrated handout, XML, and overview). 

 Alcohol Use Disorder Amyotrophic Lateral Sclerosis (Arabic) Angina Arixtra Arrhythmias Asperger's Syndrome (Arabic) Asthma - Pediatric (Arabic) Atherosclerosis Atrial Flutter (Spanish) Attention Deficit Hyperactivity Disorder - ADHD (Arabic) Back Pain - Introduction to Pain Management Blepharoplasty - Eyelid Surgery Blood Pressure Medicines (Arabic) Bone Densitometry Breast Cancer - Hormonal and Targeted Therapies Breast Cancer - Hormonal and Targeted Therapies (Arabic) Bunionectomy Bursitis (Arabic) C. difficile Infections Cardiac Ablation for Atrial Fibrillation Cardiac Rehabilitation (Arabic) Cataract Surgery Cerebral Angiogram Chagas Disease (Arabic) Chemotherapy for Breast Cancer - General (Arabic) Chickenpox Cholera (Arabic) Colon Cancer (Spanish) Colon Cancer Surgery (Arabic) Colorectal Cancer (Arabic) Cystocele Dilation and Curettage (Spanish) Dust Mite Allergy Dystonia Erectile Dysfunction - Penile Implants Fetal Alcohol Syndrome Fibromyalgia Forehead Lift Galactosemia Gout (Spanish) Healthy Sleeping Hearing Problems in Children (Arabic) HIDA Scan HPV - Warts Hydrothermal Endometrial Ablation Incentive Spirometer Incentive Spirometer - Pediatrics Intrathecal Morphine Pump Placement Juvenile Idiopathic Arthritis (Arabic) Knee Replacement - Preventing Post Op Complications (Arabic) Living Healthy (Spanish) Living with Congestive Heart Failure Lung Cancer (Spanish) Lupus Lyme Disease (Arabic) Massage Therapy Meditation Melanoma Menstruation (Arabic) Miscarriage (Arabic) Monkeypox Multiple Sclerosis (Spanish) Nail Diseases and Problems (Arabic) Neuroblastoma (Arabic) Neurofibromatosis Non-Hodgkin's Lymphoma Nutrition During Cancer Treatment Pancreas Transplantation (Arabic) Personality Disorders (Arabic) Pregnancy - First Trimester - What to Expect Pregnancy - Second Trimester - What to Expect Pregnancy - Third Trimester - What to Expect Prenatal Testing (Spanish) Preventing Catheter Associated Bloodstream Infections (Arabic) PSA - Screening for Prostate Cancer Rhinoplasty Rubella Schizophrenia Severe Acute Respiratory Syndrome - SARS Sickle Cell Anemia (Arabic) Sigmoidoscopy Simpson-Golabi-Behmel Syndrome - SGBS Skin Cancer - Non-Melanoma (Spanish) Smoking Cessation Tendinitis (Arabic) Treatment of Myelodysplastic Syndromes - MDS Understanding the Different Types of Myelodysplastic Syndromes - MDS (Spanish) Urinary Tract Infections in Elderly Adults Uterine Diseases (Arabic) VP Shunts Warfarin - Review for Current Users - Pediatrics

[mental-mona]

TL;DR yes and no. No need for the catastrophizing, "We're all gonna die or be seriously disabled if we don't mask and take every possible measure!" I've seen a ton of here. Current Covid variants' illness is MUCH less severe than it was, rarely requiring hospitalization. If you're elderly and/or immunocompromised, yeah, you should probably still mask up, but the rest of us can do as we see fit. There is quite a bit of herd immunity, but obviously it's far from perfect. As for long Covid, nobody can even agree on a definition, but it seems similar to such things as chronic fatigue and post-Lyme syndrome. If you're having fatigue and brain fog symptoms post-Covid, see your doctor, but there is no single treatment for everyone.

~~~

Now, are y'all here gonna believe an infectious disease specialist, or various media outlets' scare tactics?

[transmalewife]

Hi there! Really interested in this conversation about Lyme and ticks, which I'm frankly quite ignorant about.

I do know about untreated late-stage Lyme disease -- my father had that -- but I had never heard of chronic Lyme disease (sort of assumed it was the same thing), and I was kind of surprised to see how many sources call it a fictitious disorder. What's the deal with that, if you don't mind my asking? Seems like an interesting story/controversy lurking behind the scenes.

so i could give you a non answer, sidestep the question with a bunch of 'fun facts' surrounding the issue, and leave you wanting, or i can be honest, say I don't know, and if you find out a straight answer please let me know, because it's ridiculous and really hard to learn anything on. like i've read medical papers that mention the 'inexplicable' shift from calling lyme chronic to accute in the 90's.

Anyway, nowadays the only version of lyme that's widely considered 'real' is acute lyme, so infection immediately or soon after tick bite, with the bullseye rash, treated by up to 4 weeks of 1 antibiotic. (usually doxycicline). if caught early, this treatment will usually work as a cure. Then there's untreated late stage lyme, pretty self explanatory. here's where the official medical guidelines get fuzzy, because they acknowledge that after years, the same treatment might not be enough, but refuse to recommend another.

The other officially regognized option is post treatment lyme disease syndrome, which is having lyme symptoms long term after that treatment. here's where it gets even weirder though, because the requirements for that state you can't have active borrelia infection in your blood to have it. However, many people undeniably have positive blood tests long after treatment. so what now? nothing.

That's what typically described as chronic lyme. ILADS is the society doing the most research/establishing unofficial guidelines for treatment, that are often the only effective thing. some studies done by other groups showed that more antibiotics don't help with long term symptoms, but some researchers involved in them have questioned their own methods since. ilads tends to focus more on symptoms than blood tests, which has some basis to it, considering how expensive, unavailable, and innacurate the tests can be.

because of the official medical guidelines, chronic lyme often gets misdiagnosed as fibromyalgia, multiple sclerosis, arthritis, even bipolar disorder. or you know. Woman Syndrome. I will never forget the conversation my mom had with a doctor while trying to learn what was wrong with her that went like this doctor: your joints hurt because you unfold the pullout sofa every day, mom: I have a bed. d:because you wash your hair in the bathtub, bent over. m: I don't have a bathtub, only a shower. d: you carry heavy groceries m: my partner has a car, I don't carry heavy things d: because you wash the floors on your knees. m: I have a fucking mop d: that will be 200 zł thank you very much.

chronic lyme is about hope, in many ways. post treatment syndrome implies what? that this is it? your life forever? I won't deny there's probably long term damage to joints even after curing lyme, but as long as it's not fucking cured, as long as it shows up in your blood, you wanna keep fighting. New meds are being tested (like disulfiram) that are less damaging than long-term antibiotics, and in many ways the situation is similar to those stories about aids patients in medicine trials who mixed their placebo and real meds because they wanted to fucking live. people are learning about medicine, writing the protocols they've tried, working with their local doctors to run unofficial trials. this is not by any means perfect, it can even be dangerous, but in many cases, its so much better than nothing. disulfiram has been long since approved and tested to treat alcoholism, so it's not like randomly taking for example heart meds, that can seriously hurt you in the other way if you don't have the problem they're meant to treat. the only official use of disulfiram is making you sick when you drink alcohol, so it has been used in people with a variety of different physiologies and underlying conditions.

as for why it still isn't officially recognized, I honestly don't know, and I've tried to find out (though not much, i admit. I don't care much about the politics of it, since the guidelines trickle down here from the us anyway, and also I know when I had it, what I care about is how to treat it) but the change from lyme as a chronic illness to only accute happened around the time a vaccine was being developed, and there was a whole bunch of capitalist machinations around that, including iirc narrowing the testing criteria to only one type of infection that the vaccine actually worked on, so that might be related.

If you want to learn more I recommend reading Leslie Feinberg's Casualty of an Undeclared War series. Keep in mind that this is not a fact checked, published work, but only research notes, but it's a place to start. you might even find your answer there. I only read parts of it years ago, and as i mentioned memory loss is one of my worst symptoms, so I can't tell you much more about whats in there. also keep in mind this was written on hir death bed, so it's hard to read at times, both in terms of the emotional toll and legibility (it's not handwritten or anything, its very much typed, but still). i think ze also touches on the conspiracy theories around lyme being an escaped bioweapon, which i would take with a massive grain of salt. but yeah if you want a comprehensive list of lyme related controversies and problems, from the perspective of a dying patient, and a communist who will not shy away from things like the fact expensive healthcare in the us is killing hir and that the reason there's no vaccine is because people couldn't make money of it, that's the best you can get