waysidewhelp
@waysidewhelp
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Former BSL-2/3 Preclinical Researcher, now surviving #LONGCOVID, #MCAS, #EDS, & 20 yrs of #MECFS. Artist, Bio Major, & Dino/Bird Nerd. N95 Respirator Fanboy!😷
Get FREE N95’s in the US 👇
Joined May 2023
Sorry I’ve been MIA. Severe 24/7 headache upper backside of head, stiff neck, vertigo/nausea, bad balance walking, xtreme light/sound sensitivity, numbness on all L side of body. New calcifications inside skull on CT = normal & then FND diagnosis by neuro. What can be done?
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Doctors tell me not to “google my symptoms”. Bitch please, I’m using Google Scholar to read cutting-edge, peer-reviewed, published research on conditions you only have 1 barely-remembered outdated med school lecture on. We are not the same.
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I just finished ALL the dishes that had been piled up & rotting in the sink for 2 weeks (I was too sick & weak to do them before) (also I don’t have a dishwasher - I’m the dishwasher 😂). It took 3 sittings but they’re done & drying. 😤. Please clap. 🥹.
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My husband’s workplace got BRANDED/MONOGRAMMED PPE masks made for their employees. How COOL is THAT?!. Imagine if more orgs did this:. You go to Disneyland, scan your tickets, & they let you pick a cute N95 respirator collectable w/ your fav character on it to wear in the park?!.
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Holy moly the Apretude HIV PrEP injections might be working to help me get rid of SARS-CoV-2. No way to know for sure yet - will have to discuss w/ my HIV specialist. My CD4+ Helper T-Cell counts back & they’re starting to trend back up!!! . Finally GOOD NEWS!!! 🙌.
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Hey, it me. 🥺. I just turned 33 when Long Covid finally got me, had been working at the best-paying, most fulfilling job (cancer research) I’d ever had, & we were saving up for our first home. That’s all gone. I can barely walk now.
Imagine: You’re in your mid-30s, doing mid-30s things. One day, you get sick. You almost die, & it doesn’t go away. You’re now disabled. Other people report dying & becoming disabled by the same illness, while still others accuse the sick of lying. It’s chaos for a time.
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So I’ve likely got Measles due to a confirmed exposure. No rash (yet) as it is not wild-type & I am immune compromised & may not develop it. I have called every single place in SF & no one knows where I can get a RT-PCR or serum IgM to test for Measles. PCP not returning call.
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@Amnesiac2326 This is a violation of the American Medical Association’s code of ethics. Report them w/ their license numbers to the medical review board in your/their area of practice. Assuming you got this care in the US. Sorry this happened to you & thanks for alerting others.
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Has anyone tried bringing a medical malpractice lawyer to a gaslighting doctor’s appointment yet? 🤔.
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The internet is an accessibility tool & you’re being a gatekeepy piece of shit :).
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Without saying too much (NDA), from occupational experience, mycoplasma pneumonia is very difficult for even healthy, immune-competent individuals to fully recover from once acquired, & incredibly infectious in a close-knit community. That’s WITH targeted antibiotic treatment.
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Since a lot of responses mention that N95 respirators are too much $$$ to keep on hand (VALID!):. Here’s CDC’s Page to find a LOCAL HEALTH CLINIC that’s been give FEDERAL FUNDING to give out FREE N95’s to their communities here:.👇👇👇👇👇👇👇👇👇👇👇👇.
For people who do not wear a mask to prevent their own COVID-19 infection or the spread of the virus which is known to cause potentially serious long-term health issues: why don’t you wear a mask? What is your plan to protect yourself and others?.
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Wanna access journal articles beyond their abstracts but not pay a bajillion smackeroonies to individual journals?. Join ur local library & ask them if they offer academic access to full-journal-articles! 😉.
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I am gonna commit the ultimate hubris & just say it:. SARS2 pathology is much worse than HIV. How many ppl die from the acute stage of HIV infection (flu-like symptoms)? Compare that to acute SARS2. Then think about how many SARS2+ survivors we have who may develop HIV- AIDS.
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LONG COVID is kinda like FIGHT CLUB. The first rule to get medical care for conditions caused by chronic SARS-CoV-2 infections is….You do not talk about Long Covid. Seriously. I get the best results when I don’t even HINT that I know what is causing these new symptoms of
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We are in trouble as a society. Even if we get measles there is no access to testing to confirm it. And there is little that can be done for treatment anyway - I just want the lab done for future insurance purposes for long term complications.
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Where did the @CommunityNotes that was correcting Dr. Jha’s disinformation on this post go? Why was it removed?.
There's a lot of bad information out there about how covid damages the immune system. It really doesn’t. But you know what does?. Measles. And thanks to the antivaxers. We are seeing measles outbreaks again. Encourage people to get their kids vaccinated. It’s really important.
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@ravenscimaven Just wait until you read up on the CD4+/CD8+ exhaustion/depletion ability the chronic SARS-CoV-2 infection is capable of! 😱. This is from a Jan2020 SARS-CoV-2 infection in an HIV negative patient (me - it me)
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You go to a GIANTS game, you get a COLLECTABLE N95 themed with their home-game uniforms to wear in between sneaky bites of garlic fries?!.
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1st authors gonna hate me for this but sometimes if you email them & compliment them on how awesome their abstract is & ask them nicely for a copy via a polite (but not entitled) email, they usually help a bro out. 👍.
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Your kids school shows off its dorky mascot & school pride with weekly-distributed N95’s in the school’s colors, & there’s MERV-13 filters running in the hallways, classrooms, & dining halls!!!.
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THIS IS ALL STILL POSSIBLE!. We can make stuff like this happen! We can make a whole industry & SO MANY NEW JOBS around PPE & FILTRATION initiatives!!!. And companies can benefit financially for it!!!.
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You’re super excited to go to a show of a musician you’re the biggest fan of!!! You scan your ticket at the gate & security checks ur bag they hand you a limited-edition tour-specific collectable N95 respirator!!! The venue’s got MERV-13 filters running throughout the show!.
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@emilyesfraser Don’t forget: Some ppl don’t get the rash ever… b/c of immune deficiency (lymphopenia - of which C19 infection can cause)… but could still be infectious. So that’s cool. 🙃.
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You’re headed to the cinema for the summer’s BIGGEST BLOCKBUSTER MOVIE - JURASSIC PARK #42!!! Free with your tickets you get to pick from 1 of 3 collectable N95 designs - they make you look like you have a TOOTHY DINOSAUR GRIN when you put them on!!!.
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I reached out to someone in person & am getting help. May be quiet here for a bit.
Whatever happens - Thank you for all the help, the friendship, shared knowledge, camaraderie, discussion, solidarity, empathy, & brilliance you’ve all been kind enough to share here.
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@SalvMattera Oh? . They have a cardiologist who acknowledges Long Covid is a thing?. I’m surprised. I can’t even get my referral approved for their LC clinic. I don’t “meet criteria” (but they wont say why) after 3x infections. Hope they help you. 🙏.
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Wear a respirator in any shared-breathing space (universal precautions). Prevention is better than trialing a treatment that may not work. You don’t want mycoplasma pneumonia. It’s a slow recovery (assuming you recover).
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Ya’ll without LONG COVID need to be aware of how you will be treated if you try to get care once you start developing more severe symptoms. You wont be believed. At all. I’ve had 3 cardiac events as seen on both ECG’s & holter monitor (2 caught on Ziopatch). STILL had to beg.
@ashawolves @sjh_canada We’re not believed. Even when our ECG’s are abnormal. They wont even follow the standards of care to take troponin levels. And going to a hospital with low CD4+ counts? Opportunistic infection heaven. It’s safer to stay home. Many are blissfully unaware of the situation. 💔.
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You go to your hospital for a planned surgery, you’re nervous at first but then you’re greeted by your surgical team - they’re all wearing matching N95’s monogrammed with the hospital’s logo!. You’re immediately put at ease.
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It’s VALENTINE’S day, so you pick up some PINK & RED N95 respirators that have CUTE HEART PATTERNS with your rose bouquet & box of chocolates from your local pharmacy on the way home to surprise your special date tonight!!!.
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We’re not wrong. (Though we wish we were). We’re just ahead of the curve. (And we want more ppl to catch up). Please, seek out information to protect your future. (We’ve been trying to make it accessible to you). We care about you. (And you need to care about yourself, too).
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@ravenscimaven Hope this doesn’t count as me “releasing spoilers” for you as you read thru research. But yeah, this BSL-3 pathogen is a doozy - & thanks to lies-of-omission from public health sources - most people are unaware that they may now have low CD4’s :(.
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It’s PRIDE SEASON!!! You & your crew already ordered your respective PRIDE FLAG THEMED N95’s to go w/ your outfits!!!. At the parade you see a Drag Performer with a bedazzled N95 to go w/ their stunning outfit!!! You yell “SLAY QUEEN!” at them!.
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@ProCuris01 I have used that one recently! It works!. “Please amend my after visit notes to accurately reflect what I requested & your reasoning for denial of my request”. Got one to stop lying by omission. Per HIPAA the charting needs to be accurate & the client can ask for this.
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Re: Measles Outbreaks. The MMR vaccine is a live attenuated (weakened version) vaccine. And typically, immune deficient persons should avoid getting live attenuated vaccines. How many ppl are now immune deficient w/o knowing due to SARS-CoV-2 lymphopenia?. Per CDC:
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It’s Sunday, & as you enter your placr of worship, you’re handed a branded N95 that was purchased custom with the tithings you & your community donated last month. The church was also able to upgrade their HVAC to MERV-13 filtration b/c of the generosity of its followers!.
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Are you TIRED of acquiring airborne pathogens, over & over, getting sick AGAIN & feeling like 💩?. Try something new! Consider adding ✨N95 respirators✨ to your daily routine to protect your respiratory health in shared air. 😉. (Ad by the Do You Know Your CD4+ T-Cell Count Org)
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@ravenscimaven Oh yah, EBV is another baddie that SARS-CoV-2 hangs out with. I have had EBV related ME/CFS since 14 (20 yrs now) - EBV sucks!!!.
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And lastly, if ur a college student or work for an academic institution/teaching hospital, ask ur college or HR if you can be granted access thru their credentials for your “continuing education” to advance your breadth of knowledge in ur field of study/occupation. 😉.
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Please do not minimize Measles. There are MANY good reasons they worked so hard to try to eradicate it. Death is not the worst outcome. Prolonged suffering can be much worse & far reaching in effect.
Measles can also be active in your CENTRAL NERVOUS SYSTEM & BRAIN. It can cause acute personality changes. During prodrome symptoms. Ask me how I know.
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Managed to get a foam neck collar to immobilize my cervical spine during sleep. I was able to sleep last night finally. Very thankful. 🙏. Mood is improving today. Complete lack of sleep on top of everything else I am dealing with daily just “broke” me yesterday. Sorry. 😔.
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@kate__said @nursejenii Hope you submit an invoice for your educational consultation in with those papers too! 🫡.
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For anyone doubting the value of comparing the immune dysfunction as seen in HIV+ vs SARS2+ patient populations:. “Sharing CD4+ T Cell Loss: When COVID-19 and HIV Collide on Immune System” (2020 - frontiers in Immunology).
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I have found my upper limit for enduring suffering. I don’t want to be here anymore.
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You head to a fancy upscale restaurant in NYC - free with your reservation you & your party all get sleek monogrammed N95’s to wear while you wait for your Michelin Star meals. There’s MERV-13 filtration throughout the restaurant, & outdoor patio seating that’s heated.
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@christen_rexing You may be able to take photos of magnified subjects thru the scope by lining up a camera lense with one of the eye pieces just-right! Please share his discoveries (with his consent!) with us as he makes them!!! ❤️🔬🦠🧫❤️.
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My “Likely Measles” symptoms in case anyone gets anything similar w/o a rash & wants to warn others so they can get tested & get access to Post-Exposure Treatment within 4-6 days of exposure.👇👇👇.
Fever/Chills, Sore throat (better with warm food/liquid), sneezing, coughing, minor runny nose, minor sinus pain, minor watery eyes, muscle aches, L eardrum burst open, R ear blocked/painful. 11 days after exposure to person who was sick w/ attenuated strain after their MMR vax.
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It’s your child’s FIRST BIRTHDAY PARTY!!! You order special themed N95’s for the attendees of the party!!! Your friend’s kids have fun jumping in the bounce house as you catch up with the latest happenings in their lives.
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Fever/Chills, Sore throat (better with warm food/liquid), sneezing, coughing, minor runny nose, minor sinus pain, minor watery eyes, muscle aches, L eardrum burst open, R ear blocked/painful. 11 days after exposure to person who was sick w/ attenuated strain after their MMR vax.
So I’ve likely got Measles due to a confirmed exposure. No rash (yet) as it is not wild-type & I am immune compromised & may not develop it. I have called every single place in SF & no one knows where I can get a RT-PCR or serum IgM to test for Measles. PCP not returning call.
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Predicting another water-is-wet moment when medical research catches up:. ✨Acquired✨ auto-immune disease will be found to be secondary to previously undetected chronic infection [& our immune system’s valid activation by said chronic infection(s) & collateral damage done to.
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Guys, I appreciate the “get well soon” sentiment but…. I need antivirals for my chronic SARS-CoV-2 infection. Before my liver & kindeys fail & I can no longer metabolize antivirals. & no antivirals w/o funding, research, & approval once safe/effective drugs are found.
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@ravenscimaven You may want to consider getting your CD4:CD8 lymphocyte levels checked if you’re having issues with fungus that isn’t responding to treatment. :(.
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@ashishkjha Dr.… please. Stop. This isn’t transient Lymphopenia. It literally enters CD4+’s. Please read some research.
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I am SO excited!!! I finally got a collapsable wagon to help transport heavy groceries into my apartment w/o dislocating my shoulders!!!! .🥳🥳🥳
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It’s your Daughter’s Quinceanera, & you & your Spouse found her the perfect N95 to go with the dress she’s wearing. You look over from across the table filled w/ delicious food, & shed tears of joy as you realize she’s become a young woman with a bright future ahead of her.
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Unfortunately this is 100% accurate. They sent me to the psych ward over the winter holidays & new year after my Nephro told me to go to the ED for hypercalcemia in my blood labs. They admitted me because I was suddenly unable to speak & they couldn’t get my records from my.
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@healingfromlc I believe this virus may be the catalyst for a massive paradigm-shift in medicine (eventually, hopefully) where pathogens are assumed to persist unless clinical evidence is established otherwise. We’ve been quite foolish to assume the opposite for the length of time we have.
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It’s Prom night. You remind your son that he (or his date) doesn’t have to remove their N95 if they don’t want to. He tells you to stop being so embarrassing through flushed cheeks. You remember what it was like to fall in love with your first crush as a teen.
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Still kinda messed up that you can walk into most major big-box general retail stores & see huge displays of big packs of “surgical masks” (which offer basically zero respiratory protection) near the pharmacy/first aid section but K/N95 respirators are very rarely stocked at all.
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I swear, if I survive this, if I make it thru:. I’m going to Med School, getting my MD, & I am gonna start a Chronic Infection Sub-Specialty Residency Program. The first in the US, if I have to be. It’s time. Enough is enough. We all deserve better. We always have.
Proposal:.New Sub-Speciality of Internal Medicine. Chronic Infection (CI). We currently have: .🦠Infectious Disease (ID) who, IMO focus mostly (but not exclusively) on ID diagnosis & treatment of the ACUTE disease states of Pts. 🦠HIV Specialists who diagnose & treat HIV+ Pts.
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UPDATE:. 🥳I WAS ABLE TO STOP THE WEIGHT LOSS!!!🥳. As of this morning I’ve stopped the progression of the weight loss & may yet be able to start gaining it back!. THANK YOU to everyone who reached out with ideas & suggestions to get these calories/nutrition into me!.🙏🙏🙏.
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My new side guards for my eye glasses came in today I am so happy 🤓
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Whatever happens - Thank you for all the help, the friendship, shared knowledge, camaraderie, discussion, solidarity, empathy, & brilliance you’ve all been kind enough to share here.
I have found my upper limit for enduring suffering. I don’t want to be here anymore.
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Laura is not the only one this has happened to. This happened to me too. We’re not wrong - we’re just early. Figure out how to help us - & in helping us you will know how to help others who will develop this next.
@jacksojj88 @dbdugger @EnemyInAState @fitterhappierAJ Thank you! I was tested for HIV *multiple times* after Covid in early 2020. It was physically impossible for me to have acquired HIV since I was last tested, but they didn’t believe me due to my symptoms + labs. Once they ruled it out, the curiosity ended. Without a positive.
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@AmandaB55744931 Hi Amanda:.Is she able to tolerate fluids by mouth? If so, consider trying an Oral Rehydrating Solution (ORS - Sugar, Salt, Potassium powder packets in a special ratio that forces thru osmosis to rehydrate a person) - in the US we have a brand called “liquid IV” that I have had.
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@NBoydGibbins Odd! All of my out of range labs have been declared normal, too! 🤔. Must be yet another symptom of SARS-2 that magically makes abnormal labs *look* normal to medical practitioners? Only explanation that fits!.
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@jakescottMD As a patient in the Stanford Medicine system who now has heart failure due to my chronic SARS2 infection being untreated & my symptoms ignored for over a year. Thanks! 👍. Oh, also these are my CD4+’s, HIV-.
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Guess who has his first Cardiology Specialist Appt next week after a year of inappropriate sinus tachycardia at rest & 12 denied requests for a cardiology referral?. Me. It me. Only took a calcified mitral valve to get it. Oh and pericarditis. 😂.
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So yesterday my PCP kinda shrugged off that I’ve lost 20lbs in a very short amount of time due to no longer being able to tolerate nutrition besides glucose, electrolytes, & some vitamins/minerals. No big deal. 🤷♂️. This is what Long Covid Patients are facing every day, globally.
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@mryoung151 Annnnnd this infographic is likely only considering the rate of spread in a population with a “normal” amount of CD4+ Helper T-Cells…. …Not the population we have now, of which many are suffering from silent lymphopenia/immune insult from repeated C19 infections….
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I just tried on a @3M N95 Aura Respirator for the first time…. Oh baby… Daddy likes. 🥴. So comfy. 😷. (been using the 3M medical “cup” style N95’s & Amazon-bought KN95’s previously)
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@ravenscimaven @JoeBiden Do you have new-onset Hearing Loss since your SARS-CoV-2 infection too?. I lost left-sided hearing suddenly in July ‘23. Was able to get some back w/ quick treatment. Now slow, steady (mostly high/med range) HL in both sides (bilateral). Accessibility is needed! 🙏🙏🙏.
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I’ll be donating my medical cadaver to Long Covid Research if/when that time comes. I’ve made my Husband aware & we’re redrafting my advance directive this weekend. We don’t play.
Autopsies are key to understanding the pathophysiology of novel diseases by enabling deep phenotyping of body tissues. Protocol and methods of RECOVER-pathology, a study which investigates tissues and biospecimens of people who died in #LongCovid.
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It’s been 11 days since I was exposed to confirmed (but the weakened form from the MMR vaccine) Measles so I’m sadly out of the PEP window for post-exposure treatment.
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For those criticizing me for daring to suggest that Pts are capable of learning & teaching themselves basic➡️moderate medical/scientific literacy in order to communicate better in a MUTUALLY respectful partnership w/ their Doctor. Lol. Lmao even. You’re part of the problem!.
Doctors tell me not to “google my symptoms”. Bitch please, I’m using Google Scholar to read cutting-edge, peer-reviewed, published research on conditions you only have 1 barely-remembered outdated med school lecture on. We are not the same.
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Proposal:.New Sub-Speciality of Internal Medicine. Chronic Infection (CI). We currently have: .🦠Infectious Disease (ID) who, IMO focus mostly (but not exclusively) on ID diagnosis & treatment of the ACUTE disease states of Pts. 🦠HIV Specialists who diagnose & treat HIV+ Pts.
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SF. If you have not been wearing a respirator (N95, KN95) in public air,. Consider doing so now. If it’s been over a year since your last TB test, consider getting one sometime. The BEST way we had to know current risk lvl was stopped w/o a word, & never resumed. 🤷♂️.
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I wore gloves, an N95, & a faceshield for splashes b/c it was pretty gross not gonna lie. & I don’t wanna risk inhaling extra bacteria/fungus into my airway. 😂. With my lil apron it ALMOST felt like I was back in the lab w/ PPE handling glassware (beakers, graduated cylinders).
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This is at the best a global biodiversity bottlenecking event for our species. At worst, we may kiss the brink of extinction as a species with time. I hope I am incorrect. Please, do what you can with what you can access to avoid repeat infection. Every individual matters.
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@RubberDucky333 FYI… she forgot to mention that it has an affinity for CD4+ Helper T-Cells just like HIV too. 😉. (I’m HIV-, SARS-CoV-2+)
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@POTUS Ok - I am asking: We need help. We need to fast track the development of repurposed or novel antivirals that are proven effective in stopping SARS-CoV-2 replication inside the human body. Please pass legislation that encourages this w/ funding. Please.
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ED MD said “I don’t know” tonight - when I asked what else could treat my acute Pericarditis & Pericardial Effusion that would not react adversely w/ my Mast Cell Activation Syndrome. I THANKED him for being HONEST. Then he said he’d ask Cardiology!. 👏THIS IS HOW IT’S DONE👏.
When I was a young doctor I had an attending tell me:."You never tell a patient 'I don't know.'".I strongly disagree. Telling a patient you don't know shows honesty and humility. Then you can tell them you will do research on the matter, or get a second opinion, etc.
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@ravenscimaven It IS a beast - but at least we have antivirals for it approved by the FDA (well… for acute EBV or acute reactivation). I managed to snag a trial of Acyclovir (renal-sparing dose) for latent/chronic EBV & seeing vast improvement of the ME/CFS symptoms that predated my LONG.
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@LizHighleyman Ok but consider: the average person can physically put on a N95 & slow the spread. The average person might have difficulty finding out which research orgs are trustworthy/worthwhile to make a financial donation to, IF they can afford it.
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Ready for more? We don’t have to give up cultural practices we love!!! .🥰🥰🥰.
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I am not sorry for saying something about how I was feeling - not sorry for reaching out. That’s not weakness, not something to be sorry for. It’s good to reach out when in crisis instead of choosing a permanent end. I am sorry for causing any distress to others. 🙏.
Managed to get a foam neck collar to immobilize my cervical spine during sleep. I was able to sleep last night finally. Very thankful. 🙏. Mood is improving today. Complete lack of sleep on top of everything else I am dealing with daily just “broke” me yesterday. Sorry. 😔.
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I wish hotels would mandate MERV-13 or HEPA filtration between occupants in hotel rooms/suites/meeting rooms, etc. & have filtration running in lobbies/bathrooms/etc. Filters could be pushed in on housekeeping carts & ran during cleaning (while the staff wears N95 respirators).
@urbanmel Yup! Which is why when I have to get a hotel room I lug a MERV-13 filtration device in, turn it on, leave for a bit (grab groceries or go to a park to birdwatch) & let it run for a bit. Never know if the previous occupant was ill with respiratory germs (or the cleaning staff)!.
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I am isolating as best I can now that I know what this likely is - Measles is one of the most infectious airborne viruses even with 2-way respirator use. My eardrum burst open this morning. I don’t want to give this to anyone else lol. 😂.
So I’ve likely got Measles due to a confirmed exposure. No rash (yet) as it is not wild-type & I am immune compromised & may not develop it. I have called every single place in SF & no one knows where I can get a RT-PCR or serum IgM to test for Measles. PCP not returning call.
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Why I share my DIY mod techniques:. Many ppl who are low income don’t have access to diff types of respirators to find what fits best “out of the package”. If they can get cheap KN95’s & mod them safely/cheaply to pass a fit test & be comfy enough to wear consistently?. WIN!!!.
THIS is how I have to modify my KN95’s to pass a fit test on myself. Unmodified KN95’s do not pass fit testing on me. 3M silicone tape (skin safe) stapled across the nose bridge & head straps instead of ear loops (holds tight & zero “earritation”).👇👇👇
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Also, HIV is not generally airborne in transmission. SARS2 is, and more. This opinion of mine does not consider the politicalization of HIV nor SARS2, does not consider the intersection of behavioral/social consequences, or issues of equitable access to care. Just pathology….
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Research will eventually find out (much too late, mind you) that “Autoimmunity” in LONG COVID is because:. The immune system is ✨CHRONICALLY ACTIVATED✨ by a ✨CHRONIC INFECTION✨. Treat the chronic SARS-CoV-2 infection w/ efficacious, specific antivirals & you will see recovery.
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Scientists discover the cause of LONG COVID is ____________________________!. (wrong answers only - go!).
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Measles IgG & IgM (& Vit A level) blood labs drawn & results in 3-5 biz days. If indicative of active infection (IgM) PCP said their private hospital system affiliation will handle the RT-PCR swab test for me to confirm active infection & also sequence so we know strain. 👍.
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I feel like we should skip demanding N95 masking in healthcare at this point & just issue every HCWer 2-3 elastomeric respirators & unlimited filter refills at this point. & yearly training on how to wear/clean properly etc. w/ the yearly fit testing. It’s time.
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