#  @amymitchellart Amy Mitchell Amy Mitchell posts on X about insurance, igg, in the, virus the most. They currently have [-----] followers and [----] posts still getting attention that total [------] engagements in the last [--] hours. ### Engagements: [------] [#](/creator/twitter::472690988/interactions)  - [--] Week [-------] +126% - [--] Month [-------] +121% - [--] Months [---------] -66% - [--] Year [---------] -98% ### Mentions: [--] [#](/creator/twitter::472690988/posts_active)  - [--] Week [--] -3.10% - [--] Month [--] +85% - [--] Months [---] +169% - [--] Year [---] -1.80% ### Followers: [-----] [#](/creator/twitter::472690988/followers)  - [--] Week [-----] +0.11% - [--] Month [-----] +2.20% - [--] Months [-----] +11% - [--] Year [-----] +19% ### CreatorRank: [---------] [#](/creator/twitter::472690988/influencer_rank)  ### Social Influence **Social category influence** [finance](/list/finance) [stocks](/list/stocks) [countries](/list/countries) [technology brands](/list/technology-brands) [us election](/list/us-election) [currencies](/list/currencies) [celebrities](/list/celebrities) [social networks](/list/social-networks) [ncaa football](/list/ncaa-football) [musicians](/list/musicians) **Social topic influence** [insurance](/topic/insurance), [igg](/topic/igg), [in the](/topic/in-the), [virus](/topic/virus), [health](/topic/health), [mask](/topic/mask), [staff](/topic/staff), [caught](/topic/caught), [to the](/topic/to-the), [if you](/topic/if-you) **Top assets mentioned** [Pfizer, Inc. (PFE)](/topic/pfizer) [Gilead Sciences, Inc. (GILD)](/topic/gilead-sciences) [April (APRIL)](/topic/april) [Oxygen (OXY)](/topic/oxygen) [Spike (SPIKE)](/topic/spike) ### Top Social Posts Top posts by engagements in the last [--] hours "@amylestoye I haven't priced one yet. Not sure if Julian HC treats mold issues. Working on hormones first. And I'm herxing tonight too. Upped malarone dose again" [X Link](https://x.com/amymitchellart/status/1088642155164372999) 2019-01-25T03:38Z [----] followers, [--] engagements "@amylestoye @bennessb It's a type of yeast probiotic that inhibits bacterial and fungal overgrowth. Both Dr M and Dr S wanted me on it while I take antibiotics" [X Link](https://x.com/amymitchellart/status/1096079829269692416) 2019-02-14T16:12Z [----] followers, [--] engagements "@amylestoye I'm hoping my IG therapy will help fight EBV. I can't go off singulair or claritin. I'd never heard of oliverex" [X Link](https://x.com/amymitchellart/status/1120366983936204801) 2019-04-22T16:41Z [----] followers, [--] engagements "@LonnieRhea What's your take on Biocidin as a biofilm buster I tolerate all kinds of antibiotics but taking metronidazole or grapefruit seed extract is too much for me to handle. Today my NP recommended I try Biocidin. I must have a bad build-up of biofilms to have such severe reactions" [X Link](https://x.com/amymitchellart/status/1130703669882773505) 2019-05-21T05:15Z [----] followers, [--] engagements "@dralmiller @amylestoye What are some alternatives to flagyl if its not well tolerated My doctor had me taking it [--] days a week but it caused fatigue to exhaustion. Trying Biocidin but even [--] drop once a day is causing problems with sleep mood and energy" [X Link](https://x.com/amymitchellart/status/1142475128682483712) 2019-06-22T16:51Z [----] followers, [--] engagements "@stiffnessler @marybethpf @IDSAInfo @LymeBook artemisisin banderol samento houttuynia cryptolepsis and so many probiotics antifungals antihistamines and other supplements. Focused on treating bartonella and babesia right now. I was wrongly diagnosed with MS so I understand the overlap of neurologic symptoms" [X Link](https://x.com/amymitchellart/status/1197591295436500992) 2019-11-21T19:03Z [----] followers, [--] engagements "@stiffnessler @marybethpf @IDSAInfo @LymeBook Forgot grain free diet and biocidin. Recently discovered mold in home; remediation pending. With a previous doctor combinations tried in order: doxy/azith cefuroxime/tinidazole/clarithromycin doxy/rifampin/cefuroxime. Rifampin worked for bart but drained my T4" [X Link](https://x.com/amymitchellart/status/1197592843893854208) 2019-11-21T19:09Z [----] followers, [--] engagements "@woodchuck412 @rb_long @longestrecovery @CatiaLookin I haven't used Pinella for Lyme or COVID. The extracts I'm taking are houttuynia cat's claw/samento and biocidin" [X Link](https://x.com/amymitchellart/status/1385280550487871488) 2021-04-22T17:13Z [----] followers, [--] engagements "@SenSherrodBrown Cutting the additional $300 isn't just an insult it's impossible to live on the minimum $189/week. I'm a pet sitter struggling to make my business recover. Clients are booked for the rest of the summer but income is halved. Dewine wants me to abandon my clients for another job" [X Link](https://x.com/amymitchellart/status/1393240565454618626) 2021-05-14T16:23Z [----] followers, [--] engagements "@elizabethics @RollingStone Can anyone give me a link to get past the paywall" [X Link](https://x.com/amymitchellart/status/1473877463671390211) 2021-12-23T04:45Z [----] followers, [--] engagements "@j_b_kennedy @EnemyInAState It wasn't tollovid but I took a different brand of gromwell root/lithospermum erythrorhizon when I was exposed to COVID in January. I was able to get through with [--] days of milder symptoms. I took it [--] weeks hoping it would impact long COVID. However this herb reduces TSH" [X Link](https://x.com/amymitchellart/status/1645119018301374466) 2023-04-09T17:38Z [----] followers, [---] engagements "@mollistan Yes. I'm on immuneglobulin for IgG immune deficiency but it also reduces autoimmunity. Singulair helps with allergies and MCAS" [X Link](https://x.com/amymitchellart/status/1646652517843861504) 2023-04-13T23:12Z [----] followers, [--] engagements "@Saltykid41 @CovidCastaways He has his own equipment in his RV" [X Link](https://x.com/amymitchellart/status/1678474419172155393) 2023-07-10T18:41Z [----] followers, [--] engagements "@dsethlewis I've done [--] home sleep studies. The first time hypoxia was detected. The second apnea. However since I slept for [--] hours the ratio of my sleep disturbances compared to normal sleep wasn't high enough to be diagnosed. I was told to sleep a shorter duration to get treatment" [X Link](https://x.com/anyuser/status/1678865797647593472) 2023-07-11T20:43Z [--] followers, [--] engagements "@LundinAdvocates I had to go ahead with Neko's ACL surgery because her right hip was going to be destroyed trying to support her whole back end. She could barely move and kept falling and scooting. The alternative was putting her down; that seemed wrong. Sharing helps too" [X Link](https://x.com/amymitchellart/status/1678948520869462016) 2023-07-12T02:11Z [----] followers, [---] engagements "@LundinAdvocates Not sure if I'll be able to make payments or if I'll have to charge the surgery. I was going to wait til I had the money but it was going to be too long for Neko. I'm not going to have a large extra store of cash as long as LC medical expenses continue" [X Link](https://x.com/amymitchellart/status/1678949183632424960) 2023-07-12T02:11Z [----] followers, [--] engagements "@danaparish I'm sensitive possibly allergic to DEET. I spray Sawyer's permethrin on my shoes every spring and use Natrapel's picardin tick and mosquito repellant. These [--] work great together" [X Link](https://x.com/amymitchellart/status/1679213226519588887) 2023-07-12T19:37Z [----] followers, [--] engagements "Like HIV SARS-COV2 infects and depletes CD4 T cells but not CD8. Are we allowed to say CAIDS or CoV-AIDS yet Many #pwLC are experiencing lymphocytopenia years after acute infection. #COVID19 #longCOVID #AIDS https://elifesciences.org/articles/84790 https://elifesciences.org/articles/84790" [X Link](https://x.com/anyuser/status/1688713862831329280) 2023-08-08T00:48Z [----] followers, 82.6K engagements "@pookleblinky Thank you for this educational post. I've been dealing with bloating diarrhea and anemia along with fatigue and neuro issues. Like the giardia I suffered with for [--] years no doctor thought of testing this petsitter for a common zoonotic illness. Now I'll get tested. πͺ±" [X Link](https://x.com/amymitchellart/status/1690059391918104576) 2023-08-11T17:55Z [----] followers, 19.9K engagements "@briimii @meowmix505 Had a group pre-LCAP called TLC NOW. The acronym stood for Treat Long COVID Network of Warriors" [X Link](https://x.com/amymitchellart/status/1693159977848893599) 2023-08-20T07:16Z [----] followers, [--] engagements "Keep masks in healthcare to protect patients and medical professionals. Medical staff should wear N95 respirator masks because #CovidIsAirborne. It is negligence for infections to be allowed to spread in medical facilities" [X Link](https://x.com/amymitchellart/status/1694166051141919110) 2023-08-23T01:53Z [----] followers, [----] engagements "My CD4 has been around [---] and CD3 low since COVID. CD19 B cells are very low. All I've been offered is prophylactic meds for opportunistic infections. Unlike my IG T and B cells can't be replaced by IV. We need antiviral therapy to stop the depletion of lymphocytes by SARS-COV2" [X Link](https://x.com/amymitchellart/status/1695213267952546115) 2023-08-25T23:15Z [----] followers, [----] engagements "I experienced symptom improvement and my lymphocytes subsets normalized in the year I was on Evusheld. I've never been offered antivirals. Monoclonal antibodies need updated and trialed as combination therapy for #longCOVID" [X Link](https://x.com/amymitchellart/status/1696537293383930336) 2023-08-29T14:56Z [----] followers, [---] engagements "@systematic_fun @2C2040 @_PH___PH_ COVID walks right in past my immune defenses. First interferon [--] fails because APS1 took it out. Then IgM fails to respond because of CVID. IgG and T cells finally take action but they aren't meant to be the first line defense in normal immunity" [X Link](https://x.com/amymitchellart/status/1696793712016187536) 2023-08-30T07:55Z [----] followers, [--] engagements "@JoePhilosophe .antivirals and antifungal meds for opportunistic infections as they happen or continued prophylaxis of various anti-infective meds as I am receiving. There is no way to put more T or B cells or IgA or IgM back into a deficient body. Acknowledgement of immune deficiency" [X Link](https://x.com/amymitchellart/status/1697041964019966228) 2023-08-31T00:21Z [----] followers, [--] engagements "Binax tests are negative Flowflex nasal swab only are negative and Flowflex nasal + oral swabs are as confusing as the Lucira. Exposure date was August 31st at hospital for colonoscopy/endoscopy. Fever on Friday sore throat headache achy face tired nightmares. #COVID19" [X Link](https://x.com/amymitchellart/status/1698406190210748421) 2023-09-03T18:42Z [----] followers, [----] engagements "When hospitals say "You can't prove you got COVID here" instead of "You couldn't have caught it here" that's an infection control problem. Hospitals are using surface sanitization to control an airborne infection. Patients & staff aren't tested so responsibility can be denied" [X Link](https://x.com/anyuser/status/1699161719363502514) 2023-09-05T20:44Z [----] followers, 10.7K engagements "When the gov says "we have the tools" they mean they do not the rest of the population. I caught COVID during a procedure at a hospital last week. My doctor wants me to take [--] days of paxlovid bc I'm immune deficient and have LC. Insurance approved [--] days and no more until 2/24" [X Link](https://x.com/anyuser/status/1699563290936967438) 2023-09-06T23:20Z [----] followers, 194.3K engagements ". my hospital acquired infection. There is nowhere safe for people with immune deficiency to be and there is no adequate help available when we get sick. The gov policy is eugenics. The hospital told me to prove I got COVID there. No responsibility. #keepmasksinhealthcare" [X Link](https://x.com/anyuser/status/1699565286964232324) 2023-09-06T23:28Z [----] followers, 17.1K engagements "*I tried to pay for the extra course of Paxlovid because insurance wouldn't cover it. Due to its EUA status I can't receive Paxlovid without insurance approval and there is no way to purchase it otherwise. #Paxlovid" [X Link](https://x.com/anyuser/status/1699567343922286952) 2023-09-06T23:36Z [----] followers, 15.4K engagements "@longcovid_adri It would take weeks for me to find a brand of metformin that's gluten and corn free. I would have to contact manufacturers and then the pharmacy would need to order. No I can't pay for paxlovid. Without insurance coverage the pharmacy can't sell it to me. I tried" [X Link](https://x.com/amymitchellart/status/1699583318725964282) 2023-09-07T00:40Z [----] followers, [----] engagements "@the4thcolour I did a Binax RAT test the day of the procedure which was negative" [X Link](https://x.com/amymitchellart/status/1699670864730484833) 2023-09-07T06:28Z [----] followers, [----] engagements "@JoshuaPribanic How about we're not going to vote for Biden unless he takes LC and transmission seriously Because the mask ban mentality coming from Republicans is an even worse option" [X Link](https://x.com/amymitchellart/status/1699944193647378590) 2023-09-08T00:34Z [----] followers, [---] engagements "@dbdugger Any idea why those particular oils were chosen" [X Link](https://x.com/amymitchellart/status/1700404210158694558) 2023-09-09T07:02Z [----] followers, [--] engagements "I started Paxlovid for my hospital acquired COVID infection on the day the @POTUS joked about not masking. COVID isn't funny and masks could have prevented my infection. History rhymes. When Joe Biden joked at a Sept. [--] White House event about not wearing a mask following a known COVID exposure it drew eerie parallels to the Reagan administration's mishandling of the AIDS epidemic. Their apathy wasn't funny then and it isn't funny now. #MaskUp https://t.co/doCgHA7KS8 History rhymes. When Joe Biden joked at a Sept. [--] White House event about not wearing a mask following a known COVID exposure" [X Link](https://x.com/anyuser/status/1700409269462462669) 2023-09-09T07:22Z [----] followers, 18.6K engagements "If you were able to get an extra course of #Paxlovid (more than [--] days) how did you do this NIH recommends longer courses for immune deficient patients but my infectious disease doctor refuses. PCP tried PA; insurance declined. Can't pay cash price if pharmacy has gov supply" [X Link](https://x.com/amymitchellart/status/1700596983210050029) 2023-09-09T19:48Z [----] followers, [----] engagements "@CovidCastaways Insurance won't cover another paxlovid pack until February. This was the first time I received a pax rx in advance and I got COVID [--] days later at the hospital. Hard to save my supply when it's only covered every [--] months" [X Link](https://x.com/amymitchellart/status/1700598785154371666) 2023-09-09T19:55Z [----] followers, [---] engagements "@D_Bone Border collie No it wasn't lassie Lassie was a rough collie" [X Link](https://x.com/amymitchellart/status/1700966810458169392) 2023-09-10T20:17Z [----] followers, [--] engagements "I was able to get a second [--] day pack of #Paxlovid at a different pharmacy. My insurance refused to cover more but the pharmacy used an override to allow another pack from the gov supply. It's unlikely I could get any more until February. Big thanks to my doctor who called" [X Link](https://x.com/anyuser/status/1701000857188487224) 2023-09-10T22:33Z [----] followers, 11.8K engagements ".a pharmacy on a Saturday so I wouldn't miss a dose. While paxlovid hasn't been trialed or approved for courses longer than [--] days NIH recommends extended courses of Paxlovid for immune compromised and deficient patients:" [X Link](https://x.com/amymitchellart/status/1701000858887225492) 2023-09-10T22:33Z [----] followers, [----] engagements "@Guiness_Pig It's a scary time to wear masks. Earlier this summer I was assaulted with a marine air horn while walking my dog. This left us both with hearing damage. On Friday's walk a man within half a block pulled out a gun so we could see it and a car came within [--] feet of hitting my dog" [X Link](https://x.com/amymitchellart/status/1701329925058298267) 2023-09-11T20:20Z [----] followers, [--] engagements "@_bahhumbug I was assaulted with a marine air horn while walking my dog earlier this summer. We both have hearing damage. On Friday while masked walking in town with my dog a man pulled out a gun while we were walking towards him. Later my dog was nearly hit by a car at a crosswalk" [X Link](https://x.com/amymitchellart/status/1701350393920319693) 2023-09-11T21:41Z [----] followers, [--] engagements "Does anyone know if #tollovid/gromwell root/lithospermum erythrorhizon/zi cao (one herb many names) has an anti-inflammatory effect I hate taking it because it drops my TSH for months but I'm on day [--] of paxlovid and my lungs ache O2 drops when walking. #COVID19 #Covid" [X Link](https://x.com/amymitchellart/status/1701400945521779142) 2023-09-12T01:02Z [----] followers, [----] engagements "My FlowFlex tests are giving warped results. I think I have a new variant. I'm naming it CurVID. Day [--] of Paxlovid. Infected August 31st during medical procedure at hospital. #COVID19" [X Link](https://x.com/anyuser/status/1702065998877106303) 2023-09-13T21:05Z [----] followers, 27.1K engagements "@WangCandice Around [--] minutes Negative at [--] though there seemed to be a faint + line developing. So I watched it and ended up with the curvy mess in the pic" [X Link](https://x.com/amymitchellart/status/1702108350043808141) 2023-09-13T23:53Z [----] followers, [---] engagements "Infected on August 31st at hospital for an endoscopy/colonoscopy. Positive RAT on Sept 2nd. [--] days of Paxlovid later: still positive. Another [--] days of Paxlovid bc I have no other options. Immune deficient patients need better medical protections π· and treatments for #COVID19" [X Link](https://x.com/anyuser/status/1702427161695838447) 2023-09-14T21:00Z [----] followers, 100.5K engagements "@JaneCrowder16 I don't know. Maybe if I were young and cute famous a mother of an adorable baby or a puppy with a broken leg I would get more donations. Some people have told me I don't deserve to live or receive treatment" [X Link](https://x.com/amymitchellart/status/1702772271721410658) 2023-09-15T19:52Z [----] followers, [--] engagements "@Stanzupforit @D_Bone I'm way too tired to engage in a women in religion debate tonight. But the trouble has been political white nationalism in the US or other similar tactics worldwide. religion has been empowering to women in other countries that haven't merged politics + religion" [X Link](https://x.com/amymitchellart/status/1703297267636097383) 2023-09-17T06:38Z [----] followers, [--] engagements "What's the longest amount of time anyone has been prescribed #paxlovid I tested positive Sept 2-14 negative on 17th and took my 15th and final pill in morning on 20th. Today my sore throat returned. I'm wondering if I should take pax if I'm positive again" [X Link](https://x.com/amymitchellart/status/1704940872343711835) 2023-09-21T19:29Z [----] followers, [----] engagements "Tested positive for #COVID Sept 2nd after exposure Aug 31st. On #Paxlovid Sept 5-20. Tested + Sept [--] - Sept [--]. Symptoms resumed Sept [--]. I tested + again today. Pharmacy refusing to fill Pax again. There are no tools for the immune deficient. I'm in rebound with help cut off" [X Link](https://x.com/anyuser/status/1705326620301492728) 2023-09-22T21:02Z [----] followers, 36.2K engagements "The hospital that so carelessly infected me during an endoscopy is escaping liability because I can't prove I caught COVID there. I've lost an entire month of my life so far. COVID tests aren't free and treating reactivated Lyme required IV antibiotics in 2020" [X Link](https://x.com/amymitchellart/status/1707521020062580789) 2023-09-28T22:21Z [----] followers, [----] engagements "I have evidence of heart damage from COVID: my troponin I levels are high. No one but the ER will see me because I was recently COVID + but no one will treat that infection either. I'd risk additional infection by going to ER or hospital only to be denied Paxlovid" [X Link](https://x.com/amymitchellart/status/1707521025435460061) 2023-09-28T22:21Z [----] followers, [----] engagements "I'm taking my chances at home gambling that my sudden sweating is Lyme or POTS. These conditions can appear identical to a heart attack. No one wants to go the extra mile or think out of the box for an immune deficient patient. We're liability hot potatoes. So I'm on my own" [X Link](https://x.com/amymitchellart/status/1707521028467892605) 2023-09-28T22:21Z [----] followers, [----] engagements "Month-long #COVID19 infections aren't without consequences. For those of you that have experienced cardiac issues talk to me. What's myocarditis like EKG and D-dimer are ok. I had a sweating + feverish episode after taking out the trash [--] nights ago" [X Link](https://x.com/amymitchellart/status/1707881068257222898) 2023-09-29T22:12Z [----] followers, [----] engagements "I made it [--] days off of #Paxlovid only to test positive again. I've had COVID all of September. [--] days of Pax wasn't enough. Chain pharmacies won't fill another rx; local pharmacies refuse bc I'm using telehealth. Local docs aren't familiar w/ immune deficiency. =No more Pax" [X Link](https://x.com/anyuser/status/1708228611960877203) 2023-09-30T21:13Z [----] followers, 49.7K engagements "@amethystarlight I haven't cut ties with him because I needed my IG rx renewed. Insurance was demanding an in-person visit. I have another immuno but she's out on maternity leave. I had to keep the COVID minimizer. It was so hard not to burn that bridge. π₯" [X Link](https://x.com/amymitchellart/status/1708250608203948094) 2023-09-30T22:40Z [----] followers, [---] engagements "@Hardasshelen I caught COVID Aug 31st during an outpatient endoscopy procedure. Ran a fever Sept 1st. Tested positive Sept [--]. Started Paxlovid Sept 5th. Most recent positive test is Sept 30th. All. Of. September" [X Link](https://x.com/amymitchellart/status/1708259872591003868) 2023-09-30T23:17Z [----] followers, [----] engagements "@ParentMishmash @LoriDTindall Creating an account will give you an option to sign up for IDF news see video series and use the physician finder. They don't spam. I found it helpful. A good organization" [X Link](https://x.com/amymitchellart/status/1709000804315640227) 2023-10-03T00:21Z [----] followers, [--] engagements "@M8Void I have tried quarantining crating blocking the basement cat door to keep them in Prozac feliway various cat litters. On occasion they will choose to be inside and I indulge that hoping they will stay. In bad weather I keep them in even if they retaliate but it's gross" [X Link](https://x.com/amymitchellart/status/1709034892875407409) 2023-10-03T02:37Z [----] followers, [---] engagements "@scott_squires Disney has the same COVID policy has hospitals and medical facilities: COVID is here but it's not our problem. It's yours" [X Link](https://x.com/amymitchellart/status/1709043056068997350) 2023-10-03T03:09Z [----] followers, [---] engagements "@greg_travis @Walgreens Caresource only covers drugs purchased at CVS since it's part of Caremark. If Caresource doesn't cover COVID vaccination at CVS that's terrifying. I know from experience Caresource only covers [--] pack of Paxlovid every [--] months. Want us to die of COVID Caresource No vax no pax" [X Link](https://x.com/amymitchellart/status/1709493492060156226) 2023-10-04T08:59Z [----] followers, [---] engagements "During my month long Sept #COVID19 infection my doctor prescribed an extended course of #Paxlovid following NIH recommendations for immune compromised patients. Insurance and pharmacies denied filling more than [--] box. I tested positive 9/30 yet I had to stop treatment" [X Link](https://x.com/amymitchellart/status/1712682357491191934) 2023-10-13T04:11Z [----] followers, [----] engagements "Yesterday I went back to the hospital where I caught COVID to begin the process of evaluating my heart damage from the virus. I wore N95 and face shield. It is noted and flagged in my chart that I'm immune compromised and request that staff mask. The doctor was acting strangely" [X Link](https://x.com/anyuser/status/1713316577821556981) 2023-10-14T22:11Z [----] followers, 433.2K engagements ".infection control at medical facilities Why would someone as intelligent as a doctor dance around the edges of a room to avoid infection transmission Then he suggested pulmonology to evaluate my lung capacity every bit as dangerous as the endoscopy that infected me" [X Link](https://x.com/anyuser/status/1713316587715837984) 2023-10-14T22:11Z [----] followers, 71.6K engagements "My dog was diagnosed at [--] years old with dementia. She was exhibiting "sun downing" behavior like early Alzheimers. At that point she'd been exposed to [--] COVID infections by me. She couldn't sleep at night cried in confusion paced in circles and exhibited OCD behaviors. Screw humans and Covid as a topic for once. Dogs. Want your dog to be as smart as it has ever been Don't let it catch Covid. My dog is a Novid Dog. No dog parks no trips to Lowe's and no face kisses from people. Just long walks and cuddling with Dad. https://t.co/RAVAE04ruR Screw humans and Covid as a topic for once. Dogs." [X Link](https://x.com/anyuser/status/1713996299966533929) 2023-10-16T19:12Z [----] followers, 110.5K engagements "@PardonMyPain @hwozcmedo Sometimes dogs are diagnosed with OCD or CCD. It depends on what's causing the behavior" [X Link](https://x.com/amymitchellart/status/1714118493585510790) 2023-10-17T03:17Z [----] followers, [--] engagements "@mildTin Aim for the moon hit the fence post. But never aim for the fence post if you want a moonshot" [X Link](https://x.com/amymitchellart/status/1715270923731787846) 2023-10-20T07:37Z [----] followers, [---] engagements "Update on AstraZeneca's Evusheld [--] Supernova monoclonal antibodies prophylaxis for COVID trial from ID Week conference: #Evusheld #COVID19" [X Link](https://x.com/amymitchellart/status/1715859122879443186) 2023-10-21T22:34Z [----] followers, [----] engagements "#LongCOVID has a $50 billion research need. According to apolitical GPT4 analysis:" [X Link](https://x.com/amymitchellart/status/1716550490350117091) 2023-10-23T20:21Z [----] followers, [---] engagements "A single #COVID infection acquired during a procedure at a hospital has so far triggered: month-long infection heart damage neuro Lyme reactivation shingles vasculitis blood clotting new autoimmunity. This is on top of all the other conditions COVID's previously given me" [X Link](https://x.com/anyuser/status/1716612435325403235) 2023-10-24T00:27Z [----] followers, 41.5K engagements "My previous COVID infections have already caused: thyroiditis hypoparathyroidism immune deficiency POTS dysautonomia MCAS neuropathy insomnia night terrors hypoxia anemia malabsorption chronic diarrhea cognitive impairment exercise intolerance dairy allergy" [X Link](https://x.com/amymitchellart/status/1716614824833274010) 2023-10-24T00:37Z [----] followers, [----] engagements "@mryoung151 @DrEricDing @mtosterholm @SherrodBrown I can't believe you're siding with Vance. As an immune compromised voter in Ohio I'm not going to forget that you don't care if I'm safe. I can't get medical care without being exposed to COVID because no one there is masked. I caught COVID when I had an endoscopy" [X Link](https://x.com/anyuser/status/1717420067430744515) 2023-10-26T05:57Z [----] followers, [----] engagements "@mryoung151 @DrEricDing @mtosterholm @SherrodBrown @SherrodBrown look at this This is what happens when there aren't mask mandates in places where immune compromised people need to go. Masks are a disability accessibility issue. COVID isn't over: I caught it August [--] while having a routine endoscopy" [X Link](https://x.com/amymitchellart/status/1717421320093258206) 2023-10-26T06:02Z [----] followers, [---] engagements "@mryoung151 In [----] I spent $23143 on health insurance medications deductible/OOP and supplements. The majority was vitamins supplements/herbal treatments and OTC medications. I had to add nonprescription treatments for Lyme and LC or I wouldn't have been able to work to get my" [X Link](https://x.com/amymitchellart/status/1718354071684366698) 2023-10-28T19:48Z [----] followers, [--] engagements "On August 31st I went to a hospital for an outpatient endoscopy/colonoscopy to evaluate anemia. I had to unmask. I left with #COVID. The staff mostly wore surgical masks. The anesthesiologist arrived with his mask off. Patients deserve better than sloppy infection control. Got Germs Coming to a Hospital Near You. Hospitals should be a place where everyone can go to feel safe. The CDC shouldn't be making us choose between getting care and getting Covid That's not healthcare https://t.co/ZUAVQfpckK Got Germs Coming to a Hospital Near You. Hospitals should be a place where everyone can go to" [X Link](https://x.com/anyuser/status/1718729657304994200) 2023-10-29T20:40Z [----] followers, 13.7K engagements "Homeless COVID longhauler @froglet80 had a fire at their camp tonight that destroyed everything they owned. Emergency help is needed Paypal saltykid41@gmail.com Other payment methods are in their pinned tweet but they can access PayPal most easily. #MutualAidRequest" [X Link](https://x.com/amymitchellart/status/1718813546962698448) 2023-10-30T02:14Z [----] followers, [----] engagements "@D_Bone I don't have confidence that Biden will either physically survive or retain adequate mental faculties through another term. One of those is going to have him out of office. I would vote for a propped up corpse over Trump but I shouldn't have to" [X Link](https://x.com/amymitchellart/status/1719136266141175995) 2023-10-30T23:36Z [----] followers, [--] engagements "@CountingCrows I might have played Amy Hit the Atmosphere like a theme song for obvious reasons. One of the many premonitions about my future life with chronic illness" [X Link](https://x.com/amymitchellart/status/1719825775262621709) 2023-11-01T21:16Z [----] followers, [---] engagements "@D_Bone @nic_moneypenny have you tried speech to text programs My brother used to use something called Dragon back in college. Might be able to talk to type the vast majority of a document" [X Link](https://x.com/amymitchellart/status/1719903856170336755) 2023-11-02T02:26Z [----] followers, [---] engagements "@D_Bone @nic_moneypenny That or read audio books. Your voice is great at least to my American ears" [X Link](https://x.com/amymitchellart/status/1719904727142699254) 2023-11-02T02:30Z [----] followers, [--] engagements "@frd_w_k @JessicaLexicus Since we are about to repeat the stakes of [----] I can't do it. My consolation is that Biden won't survive another [--] years in office. A consequence of old age or the COVID pandemic he denied will take him down. And then the next election cycle will be free of both B and T" [X Link](https://x.com/amymitchellart/status/1722839491168096583) 2023-11-10T04:51Z [----] followers, [--] engagements "Yes. Measures need to be taken to prevent infections from being acquired in medical settings. I lost an entire month of my life to a #COVID infection acquired during an outpatient procedure. I have heart damage a new autoimmune condition and worsened long COVID" [X Link](https://x.com/amymitchellart/status/1723472562338906427) 2023-11-11T22:47Z [----] followers, [----] engagements "After my September #COVID infection my #anemia has leveled up to include low hematocrit and hemoglobin. I don't have gastro disease or heavy bleeding. I have a normal iron panel but low CD19 B cells. Bone marrow disease or malabsorption Anyone else with #longCOVID anemic" [X Link](https://x.com/amymitchellart/status/1726009290664583572) 2023-11-18T22:47Z [----] followers, 18.1K engagements "My iron panel and most recent lymphocytes subsets (from May 2023). With iron supplementation and meat + greens in my daily diet I'm confused as to how my serum iron is improving while my stored iron (ferritin) is decreasing" [X Link](https://x.com/amymitchellart/status/1726011448638275874) 2023-11-18T22:56Z [----] followers, [----] engagements "@DavidJoffe64 Anemia of inflammation I did have a positive speckled ANA test in October with symptoms like vasculitis. It's wild to have iron deficiency anemia because I have mild hemochromatosis. This is going against my genetics" [X Link](https://x.com/amymitchellart/status/1726019771945099658) 2023-11-18T23:29Z [----] followers, [---] engagements "@LongCovidAidBot I caught COVID at a hospital in Sept. Now I have heart and vein damage autoimmunity. Medical expenses are high. I'm not able to work as much right now. All help needed and appreciated.π©΅ Paypal: Cash app: $AmyMitchellart GoFundMe:" [X Link](https://x.com/amymitchellart/status/1728532137450586461) 2023-11-25T21:52Z [----] followers, [---] engagements "#COVID lymphocytopenia immune deficiency and dysfunction the evidence is everywhere. Get a full lymphocytes subsets [--] panel to check your B and T cell levels if you are getting sick often after COVID" [X Link](https://x.com/amymitchellart/status/1728544283840426413) 2023-11-25T22:40Z [----] followers, 12.5K engagements "@EstherDavidson @D_Bone Eggs can have syrup only by accident. And sausage must be used to clean up the spill" [X Link](https://x.com/amymitchellart/status/1729044706733216024) 2023-11-27T07:49Z [----] followers, [--] engagements "@D_Bone What is her name" [X Link](https://x.com/amymitchellart/status/1729268732348760562) 2023-11-27T22:39Z [----] followers, [---] engagements "@lucyveepee CC Chronic COVID Are we allowed to say that now" [X Link](https://x.com/amymitchellart/status/1729291132733919359) 2023-11-28T00:08Z [----] followers, [--] engagements "@chasexdrew23 CBC CMP Total IgG IgA IgM IgE IgG subclasses Lymphocytes subsets [--] CH50 C3 C4 ANA D-dimer For starters. These are basic. Some folks would recommend cytokine panels spike antigen (found in monocytes) or autoimmune testing. Neuro MCAS cardiology/dysautonomia evaluations" [X Link](https://x.com/amymitchellart/status/1729599471426691250) 2023-11-28T20:33Z [----] followers, [---] engagements "@amethystarlight @PleaseSavemich I hate that IDF has stopped encouraging masking and COVID precautions except for vaccination. Most of us don't respond well to vaccines so it's the least effective suggestion. Even my immunologist is mocking his PI patients who mask. It's no wonder people have stopped" [X Link](https://x.com/amymitchellart/status/1730363635740930419) 2023-11-30T23:10Z [----] followers, [--] engagements "@D_Bone I'm sure you now understand that you shouldn't put animals in the back of a pickup truck and that scared pets high on adrenaline can do amazing things. that said I'd probably ask the property owners if you can search for Bob. He was probably running scared" [X Link](https://x.com/amymitchellart/status/1730715101982752933) 2023-12-01T22:26Z [----] followers, [---] engagements "@D_Bone I saw way too many unsecured pets dash across the street from the vet office into the woods and homes never to return. When they're running in a panic they don't pay attention to where they're going. The sooner you search for him the better. πΏ" [X Link](https://x.com/amymitchellart/status/1730717592854073840) 2023-12-01T22:36Z [----] followers, [--] engagements "@D_Bone FIV is a possibility in a cat that has chronic diarrhea. Had a stray with chronic malabsorption from the condition. FIV cats should be kept separate from cats that are negative but can have normal lives. More likely Bob just has parasites from rough living. I hope you find him" [X Link](https://x.com/amymitchellart/status/1730729723196551300) 2023-12-01T23:24Z [----] followers, [---] engagements "@JASanta @gardengirl778 @CDCDirector And if you ever find a web link or phone number to call for AZ's mythical early access program for Evusheld [--] let me know. It's buried in phone transfers and a poorly constructed website" [X Link](https://x.com/amymitchellart/status/1731079708341608838) 2023-12-02T22:35Z [----] followers, [--] engagements "@JASanta @gardengirl778 @CDCDirector @timkaine The lack of support for mAbs funding from Rs is wild because R states had higher use of mAbs. Likely because the people were less likely to vax or mask. So their constituents would benefit from mAbs for acute and prophylactic COVID treatment" [X Link](https://x.com/amymitchellart/status/1731083926121091583) 2023-12-02T22:52Z [----] followers, [--] engagements "@audisdead IMO if you get a decent discount on vet care for working at the veterinary office keep working there. I got care and pet meds nearly at cost for over [--] years. Best employee discount ever When I quit I had more pets than I could afford because it had been so cheap" [X Link](https://x.com/amymitchellart/status/1731134028764393886) 2023-12-03T02:11Z [----] followers, [--] engagements "@unicornthorn I've told hospitals that I'm allergic to gadolinium used for MRI contrast. Don't use it or find an alternative. Then I get a call and they say "we'll give you gadolinium plus steroids" for your MRI. I have immune deficiency. No steroids Anyone know a gadolinium alternative" [X Link](https://x.com/amymitchellart/status/1731160249782993400) 2023-12-03T03:55Z [----] followers, [---] engagements "@unicornthorn Yeah doctors will force a standard protocol even if the patient reacts badly. We'll just prevent anaphylaxis so it's not a problem. Would they force somebody with a food allergy to eat peanuts or wheat and give them benedryl + epinephrine They are insane" [X Link](https://x.com/amymitchellart/status/1731162965838082556) 2023-12-03T04:06Z [----] followers, [--] engagements "SARS-COV2 infection within [--] seconds of face to face encounters. Like the anesthesiologist who made me take off my mask seconds after putting his on which the hospital states was too minimal to allow transmission. #COVID19" [X Link](https://x.com/amymitchellart/status/1731454660253253819) 2023-12-03T23:25Z [----] followers, [----] engagements "I was exposed to a sick poorly masked person with a "bad cold" in a waiting room on Thursday and dodged another when my vascular NP cancelled today. Meanwhile some of my body fluids are still testing + from a COVID infection August 31st. Just assume everyone has #COVID" [X Link](https://x.com/anyuser/status/1732516878428311903) 2023-12-06T21:46Z [----] followers, 21.8K engagements "@valdesignasid They're not very sensitive that's true. So when I see a positive result I believe there's antigen present. Especially when [--] different samples are positive" [X Link](https://x.com/amymitchellart/status/1732520443171512740) 2023-12-06T22:00Z [----] followers, [---] engagements "Detecting Lyme and other tickborne infections isn't impossible even in immune compromised patients. Igenex offers PCR and microscopy. RED Labs in Belgium has a Lyme phage PCR. DNA Connexions has a Lyme + coinfections PCR panel. My infections were found by RED and DNA Connexions" [X Link](https://x.com/amymitchellart/status/1733977292525776944) 2023-12-10T22:29Z [----] followers, [---] engagements "As for COVID/SARS-COV2 I never created enough IgM or IgG antibodies to test positive. My infections were detected by nasal throat and stool RAT + results. Spike S1 protein was detected in my monocytes by IncellDX's research" [X Link](https://x.com/amymitchellart/status/1733978326019047710) 2023-12-10T22:33Z [----] followers, [---] engagements "@Sueb228 I had primary immune deficiency and a history of chronic Lyme EBV mold exposure and mycoplasma at the point I was exposed to SARS-COV2. Judging by my antibodies tests and long COVID my immune system saw the virus and just said "Nope. I'm done. Got enough already."" [X Link](https://x.com/amymitchellart/status/1733980031808864439) 2023-12-10T22:40Z [----] followers, [--] engagements "@dreamsofskies @nursejenii Anyone with hypogammaglobulinemia (low IgA IgM or IgG) can test negative on those kinds of antibodies tests. Not because they don't have the infection but because their total antibodies don't meet the threshold for a positive range" [X Link](https://x.com/amymitchellart/status/1734122257453080727) 2023-12-11T08:05Z [----] followers, [--] engagements "@JessicaLexicus #LCAIDS isn't quite the same as CD4 depletion seen in HIV AIDS. All types of T + B cells are affected. This type of immune deficiency is lymphocytopenia. My lymphocytes subsets [--] panels: Mar [----] compared to after COVID measured Dec [----]. May [----]. Nov [----] compared to Nov 2023" [X Link](https://x.com/amymitchellart/status/1736213499183862260) 2023-12-17T02:35Z [----] followers, [----] engagements "@TsaiMeLemoni @talulahshARC It's the use of the word "long" that's a problem. Whatever is happening in these conditions "long" doesn't scientifically describe. By avoiding medical terminology and using a trendy word that downgrades severity any condition described as "long" can be minimized" [X Link](https://x.com/amymitchellart/status/1736654371364929839) 2023-12-18T07:47Z [----] followers, [--] engagements "@dsethlewis PL ignored @LongCovidAP's letter for over a month only to copy the majority of demands and imitate the action. Don't forget to sign the letter if you haven't already. The more ways we can draw attention to our LC needs the better" [X Link](https://x.com/amymitchellart/status/1736913208814842155) 2023-12-19T00:55Z [----] followers, [----] engagements "Oh and how could I forget to thank my health insurance They denied a heart CT and instead had me run on a treadmill in spite of elevated troponin levels since September. And they won't cover Paxlovid again until February so if I catch COVID it would be $1k/box thanks Pfizer" [X Link](https://x.com/amymitchellart/status/1737218670982836276) 2023-12-19T21:09Z [----] followers, [---] engagements "@PopBase Only the animated Grinch movie is good so easily the live action version must go" [X Link](https://x.com/anyuser/status/1739392247135699212) 2023-12-25T21:06Z [--] followers, [--] engagements "@amethystarlight Ask @JoshuaPribanic where the water is safe before you buy in PA" [X Link](https://x.com/amymitchellart/status/1739422956038533125) 2023-12-25T23:08Z [----] followers, [---] engagements "@Stanzupforit In case NIH decides to remove guidelines for treating #COVID+ special populations including immune compromised I have printed this page for future reference. I also took screenshots. I recommend anyone who is immune compromised to do the same" [X Link](https://x.com/amymitchellart/status/1740874493965537560) 2023-12-29T23:16Z [----] followers, [----] engagements "I had a cardiology appointment scheduled this week to discuss elevated troponin I levels since #COVID in September. I have experienced vascular issues some are ANA+ autoimmunity in flares. My cardiologist is refusing to see me due to my "recurrent coronavirus."" [X Link](https://x.com/anyuser/status/1741244240909250796) 2023-12-30T23:45Z [----] followers, 92.6K engagements "@D_Bone @D_Bone wouldn't earlier waves of SARS-COV2 be more likely to cause long COVID simply because they're first infections Nothing to do with previous immunity from vax. Simply exposure to the virus" [X Link](https://x.com/amymitchellart/status/1741331088364954025) 2023-12-31T05:30Z [----] followers, [--] engagements "@ibrake4ants @MauC39767 I did so much better with monoclonal antibodies. Regen-Cov during Delta in Sept [----]. Evusheld twice in [----] as prophylaxis greatly helped LC symptoms and improved lymphocytes subsets. Low T and B cells normalized" [X Link](https://x.com/amymitchellart/status/1741639671627591888) 2024-01-01T01:57Z [----] followers, [--] engagements "@ClausErnst @froglet80 @waysidewhelp @taylorpartdeux @TristanVeness @lechatbaron It's NYE there's some drinking involved in the comments section" [X Link](https://x.com/anyuser/status/1741684696373748095) 2024-01-01T04:56Z [--] followers, [--] engagements "@BeauxReliosis My IgG levels were considered low by some labs when they were lower than [---]. I think my lowest total was [---] before receiving infusions. Immune response infection frequency and subclasses matter for borderline primary immune deficiency cases" [X Link](https://x.com/amymitchellart/status/1741954203193323721) 2024-01-01T22:47Z [----] followers, [--] engagements "@LauraMiers @organicbotanic It's more frightening when you learn that the Immune Deficiency Foundation abandoned COVID precautions including masking. People with PI often don't make antibodies to vaccines and there are no mAbs but IDF changed to a vax mAbs and relax approach" [X Link](https://x.com/anyuser/status/1741959729838952895) 2024-01-01T23:08Z [--] followers, [----] engagements "@LauraMiers @organicbotanic I think they received a lot of negative feedback for that clip. People with PI were a lot safer once COVID antibodies were in our IG infusions and mAbs were available. But I haven't heard any advice of returning to caution from IDF since Evusheld was lost in Jan 2023" [X Link](https://x.com/amymitchellart/status/1741961919005638677) 2024-01-01T23:17Z [----] followers, [---] engagements "@froglet80 Markers are a bad idea. Paint and glue are even worse. Even getting a N95 mask wet damages the static protection. -an artist who really wanted to paint her masks" [X Link](https://x.com/amymitchellart/status/1743198690653737075) 2024-01-05T09:12Z [----] followers, [--] engagements "@dlingenfelter SARS-COV2 doesn't just infect and destroy CD4 T cells like HIV. It takes out all types of T and B cell lymphocytes causing immune deficiency. Here are my lymphocytes subsets before and after COVID:" [X Link](https://x.com/anyuser/status/1743814337783812526) 2024-01-07T01:58Z [----] followers, 41.7K engagements "@dlingenfelter I've been trying to raise awareness that SARS-COV2 causes more rapid destruction to the immune system than HIV. AIDS is the worst thing people can imagine but COVID appears to have worse potential. It's only just begun to tear us down" [X Link](https://x.com/anyuser/status/1743816008677110230) 2024-01-07T02:05Z [--] followers, [----] engagements "@CGIface @dlingenfelter I haven't been vaccinated for COVID. But thanks for the prayer" [X Link](https://x.com/anyuser/status/1743853243464052825) 2024-01-07T04:33Z [--] followers, [--] engagements "@emahlee I have primary immune deficiency CVID and now acquired immune deficiency from COVID. I have low immuneglobulin (IgA and IgG antibodies) and low B and T cells. I don't make or retain enough antibodies in response to infections or vaccines. I receive antibodies from IG infusions" [X Link](https://x.com/amymitchellart/status/1743933119936274938) 2024-01-07T09:50Z [----] followers, [--] engagements "@emahlee [--] times when I've had COVID IgG antibodies were measured a month afterwards. I didn't test positive. During acute COVID in [----] I tested IgM negative. I simply don't respond to this virus. I also have autoimmunity triggered by COVID. Vaccination might trigger a flare" [X Link](https://x.com/amymitchellart/status/1743933879205900516) 2024-01-07T09:53Z [----] followers, [--] engagements "@crwequine @dlingenfelter I do have primary immune deficiency: CVID and APS1. That 3/19 lymphocytes subsets panel was done as part of defining features of my PID. T and B cell levels were normal. My PID had hypogammaglobulinemia (low IgA and IgG) and specific antibody deficiency memory phenotype" [X Link](https://x.com/amymitchellart/status/1744096793795653644) 2024-01-07T20:40Z [----] followers, [---] engagements "@bigolpoofter @dlingenfelter Some major differences between when you caught COVID and when I did: you were on antivirals for HIV. @dbdugger has been posting about how helpful many HIV antivirals are against SARS-COV2. I started Truvada as PreP in July [----] and also in hopes it would help me with COVID" [X Link](https://x.com/anyuser/status/1744101886398001289) 2024-01-07T21:01Z [--] followers, [---] engagements "@sun_in_winter12 I've already got a group named TLC NOW: Treat Long COVID Network of Warriors. Though I approve of what you're doing that name has been taken" [X Link](https://x.com/amymitchellart/status/1744212569991102861) 2024-01-08T04:20Z [----] followers, [---] engagements "@sun_in_winter12 Image logo for TLC NOW with date and time stamp. Twitter handle is also claimed with Treat Long COVID Network of Warriors written in full. I have a FB messenger group as well" [X Link](https://x.com/amymitchellart/status/1744218043075465535) 2024-01-08T04:42Z [----] followers, [--] engagements "@D_Bone Dave Alba Josh Louie" [X Link](https://x.com/anyuser/status/1744856352516723060) 2024-01-09T22:59Z [--] followers, [---] engagements "@D_Bone Pike Dr Alice Puppy Grandma" [X Link](https://x.com/anyuser/status/1744856555122487585) 2024-01-09T22:59Z [--] followers, [--] engagements "@D_Bone Dara RP Winnie Calbear" [X Link](https://x.com/amymitchellart/status/1744856707153490386) 2024-01-09T23:00Z [----] followers, [--] engagements "Showing off the work @D_Bone is doing with his AI illustrations from LC Land. I'm supposed to pick [--] and they're all great. ATON Communications specialist on patrol for treatment supplies interception. Protected by MCAT (MonoClonal Anti-Tiger) outside the bubble. #NewProfilePic" [X Link](https://x.com/amymitchellart/status/1745253112099533169) 2024-01-11T01:15Z [----] followers, [----] engagements "@corpsereanimate @D_Bone Inspired by the real purple moto jacket" [X Link](https://x.com/amymitchellart/status/1745294860775502297) 2024-01-11T04:01Z [----] followers, [--] engagements "@corpsereanimate @D_Bone And the real "Panther Paws" Luna" [X Link](https://x.com/amymitchellart/status/1745318794006843723) 2024-01-11T05:36Z [----] followers, [--] engagements "@CovidSolidarit1 We aren't going to get all of those things even if we strive for them but there is no reason not to want justice and to desire for wrongs to be made right" [X Link](https://x.com/amymitchellart/status/1745957006148599992) 2024-01-12T23:52Z [----] followers, [--] engagements "What would you put on a tshirt or sticker to raise #longCOVID awareness or activism I'm brainstorming ideas for @LongCovidAP but I have writer's block. #ACTUP did amazing work; everything I think of is the same or too similar. Inspired by ACTUP is fine but not an exact copy" [X Link](https://x.com/amymitchellart/status/1746680356550435062) 2024-01-14T23:47Z [----] followers, [----] engagements "Despite what assistant Ken Reidy says Baldwin's office website says she wants to hear from you. Reidy doesn't like getting emails so perhaps you should contact the old-fashioned way with a beautiful sparkling letter. Office addresses here: #ButMyInbox Hear this recording & act. LCAP emails from pwLC will stop when the #CureLongCovid [--] demands are in legislation when @JoeBiden Declares LC a National Emergency π¨ when LCAP can testify 2HELP when children receive LCantivirals @kbr227 #NoCureNoPeace https://t.co/yeuQTaq1kg https://t.co/LwmO64PQtD Hear this recording & act. LCAP emails from pwLC" [X Link](https://x.com/amymitchellart/status/1747274887654469767) 2024-01-16T15:09Z [----] followers, [----] engagements "There's a lot of bad information out there about how COVID damages the immune system. Jha This is what COVID did to my T and B cells. It's called lymphocytopenia a form of immune deficiency. COVID causes immune deficiency and dysfunction according to:" [X Link](https://x.com/anyuser/status/1747431882264895812) 2024-01-17T01:33Z [--] followers, [----] engagements "#ButMyInbox Send another letter and dedicate it to Ken Reidy. π" [X Link](https://x.com/amymitchellart/status/1747729153275969784) 2024-01-17T21:14Z [----] followers, [---] engagements "@Ryan_Ken_Acts @SarahLerner Bite to Work Program π€£" [X Link](https://x.com/amymitchellart/status/1747749324585345065) 2024-01-17T22:34Z [----] followers, [--] engagements "@LongCovidAP @LongCovidAP performs first direct action at Senate HELP hearing on #LongCovid today. Declare long COVID a national emergency. #DemandHELP Photo Credit @PublicHerald" [X Link](https://x.com/anyuser/status/1748026825924563099) 2024-01-18T16:57Z [--] followers, [----] engagements "@kennaonearth Yes my B and T cell counts on my [----] lymphocytes subsets panel were perfectly healthy. Quality and function tests of T and B cells were also normal. These were done to establish the parameters of my primary immune deficiency" [X Link](https://x.com/amymitchellart/status/1748078394053455945) 2024-01-18T20:22Z [----] followers, [--] engagements "@kennaonearth My CVID is defined by hypogammaglobulinemia (low IgA and IgG) and specific antibody deficiency memory phenotype (memory B cells have an unusually short lifespan). Evaluated during 2017-19. T and B cell deficiency came as a result of COVID first detected December 2020" [X Link](https://x.com/amymitchellart/status/1748079202237055105) 2024-01-18T20:25Z [----] followers, [--] engagements "@D_Bone If he could start aspirin and some form of anticoagulant enzyme (nattokinase or lumbrokinase) it could help with hypercoagulability and vascular inflammation. I had facial numbness during COVID. Part of the neuropathy was vasculitis/clotting blocking blood to facial nerves" [X Link](https://x.com/amymitchellart/status/1748099365409902750) 2024-01-18T21:45Z [----] followers, [---] engagements "NBC coverage of the Senate HELP hearing with @LongCovidAP's action as the lead image and video. β #DemandHELP" [X Link](https://x.com/amymitchellart/status/1748422820227338645) 2024-01-19T19:10Z [----] followers, [----] engagements "@froglet80 My long COVID is worsening [--] months out from recent infection. Exhausted by anemia heart/vein damage insomnia endocrine issues and repeat rounds of shingles. Unable to work as much and my insurance deductible has reset with the new year. I caught my 6th COVID infection on Aug 31st at a hospital. I had to unmask for a medical procedure. I tested positive for an entire month. My ability to work has been greatly reduced since then. My heart was damaged. β€π©Ή Help needed and appreciated. https://t.co/0RlbfJ5c8y I caught my 6th COVID infection on Aug 31st at a hospital. I had to unmask" [X Link](https://x.com/amymitchellart/status/1748441192449139192) 2024-01-19T20:23Z [----] followers, [---] engagements "@audisdead Usually I can tell by their physical look followed by their breath. Usually the appointment is scheduled for frequent urination and weight loss but maybe loss of appetite if it's the end" [X Link](https://x.com/amymitchellart/status/1748608152818397484) 2024-01-20T07:27Z [----] followers, [--] engagements "I have been shouting that COVID causes immune deficiency a lymphocytopenia like AIDS ever since [----]. @LongCovidAP speaks for me but they were not allowed to speak at the HELP hearing on #LongCovid. Patients are developing AIDS-like immunodeficiency and succumbing to opportunistic infections and cancer. But these stories are not being told. The situation is urgent. We have no treatments and no seat at the table to shift the focus to one that will save lives. Patients are developing AIDS-like immunodeficiency and succumbing to opportunistic infections and cancer. But these stories are not" [X Link](https://x.com/anyuser/status/1748816455687078352) 2024-01-20T21:15Z [--] followers, [----] engagements "@froglet80 That movie not real life π" [X Link](https://x.com/amymitchellart/status/1748919867082707373) 2024-01-21T04:06Z [----] followers, [--] engagements ".to learn she had had experience with vaccine-induced illness and at least [--] round of serious COVID herself. She had witnessed COVID causing psychosis and cognitive impairment. She did not play it down. Never once said minimizing "brain fog." She did not criticize my masking" [X Link](https://x.com/amymitchellart/status/1749546004846719220) 2024-01-22T21:34Z [----] followers, [---] engagements ".or suggest I force myself back into public situations. She never suggested I exercise more. We did discuss sleep issues. Increasing my hydroxyzine for sleep was the only medication suggestion. She seemed to understand my high-risk immune status and asked for names of specific" [X Link](https://x.com/amymitchellart/status/1749546007162196478) 2024-01-22T21:34Z [----] followers, [---] engagements "If viral persistence is driving any of those conditions caused by COVID those are not a "political identity." They are symptoms of an infection. It's important to know the cause to treat the disease. #LongCOVID is my infection identity. My hot take is: #LongCovid is a political identity not a disease in of itself If covid triggered it that's LC You got COVID and then you got: Chronic migraines LC Asthma LC Post exertion malaise LC Stroke LC MCAS LC POTS LC Heart attack Allergies LC My hot take is: #LongCovid is a political identity not a disease in of itself If covid triggered it that's LC" [X Link](https://x.com/amymitchellart/status/1751012316118745513) 2024-01-26T22:40Z [----] followers, [----] engagements "@lisa_iannattone Noah Kahan "Stick Season" and now he's out touring. Love his lyrics. I hope his career isn't ruined by COVID" [X Link](https://x.com/amymitchellart/status/1751180666656403776) 2024-01-27T09:49Z [----] followers, [---] engagements "@ravenscimaven The pandemic has made dating easy. I don't. I mean I would if I could find someone that protected themselves therefore protecting me. A maskless face tells me all I need to know" [X Link](https://x.com/amymitchellart/status/1753107626278240456) 2024-02-01T17:26Z [----] followers, [--] engagements "@Kenneth33071904 It was me. I got COVID in September and well look at the graph. π€£ Treat Long COVID. I was a suspect in the Ohio cryptic lineage case for a reason" [X Link](https://x.com/amymitchellart/status/1754653168179318895) 2024-02-05T23:48Z [----] followers, [--] engagements "@amethystarlight @IDFCommunity @Primary_Immune @ImmunoUK @ImmunoFever I already have LC and I assume that it's chronic. A safe haven only works for NOVIDs. I probably could have periods where I'm contagious to others. We need better treatments for acute and long COVID. But I support and understand your idea for a community" [X Link](https://x.com/amymitchellart/status/1755706823124910213) 2024-02-08T21:35Z [----] followers, [--] engagements "@tingkun55 @LauraMiers I think Marianne Williamson has mentioned LC. RFK may have mentioned vaccine injury as well. But neither of these candidates has my endorsement for other reasons unfortunately" [X Link](https://x.com/amymitchellart/status/1755753327206244754) 2024-02-09T00:39Z [----] followers, [--] engagements "πAfter I researched my results advocated for myself repeatedly and explained the significance of elevated troponin to my cardiologist who didn't understand π« labsπ€¦πΌβ: finally victory Insurance approved heart CT scan to check for myocarditis from COVID. Scheduled next week. Meanwhile also in Ohio my heart muscle has been leaking from damage from COVID for [---] months. Insurance won't cover advanced imaging. I have to wait [--] months to get a 2nd cardiology opinion. Echo EKG event monitor and stress test were ok but a leaking heart is not ok. https://t.co/ie6FphIFuE Meanwhile also in Ohio my" [X Link](https://x.com/amymitchellart/status/1756174171761987685) 2024-02-10T04:32Z [----] followers, [----] engagements "@internetuserf12 If bone marrow is infected that pretty much means long COVID is a permanent chronic infection. Bone marrow transplant is dangerous and intense procedure. Where could one find an uninfected donor There are no latency reversal agents for HIV even after [--] years. Not optimistic" [X Link](https://x.com/amymitchellart/status/1756818603595227527) 2024-02-11T23:12Z [----] followers, [----] engagements "I've suspected a bone marrow infection in my #longCOVID case for years. When my CD19 B cells were hit the hardest and depleted on my lymphocytes subsets panel and as I've become more anemic (low RBC HGB HCT ferritin) the clues pointed to bone marrow dysfunction. π¨π¨π¨This paper explicitly suggests that viral reservoirs in bone marrow must be to blame for mitochondrial dysfunction in lymphocytes monocytes NK cells dendritic cells. This would be why the complement system is wacked. This is a big deal.π¨π¨π¨ https://t.co/VhX5sDMvpg π¨π¨π¨This paper explicitly suggests that viral reservoirs in" [X Link](https://x.com/amymitchellart/status/1756819496528933185) 2024-02-11T23:16Z [----] followers, [----] engagements "My Sept #COVID infection was the result of lack of masking at a hospital after I requested protection due to my immune deficiency disability. I've experienced many more refusals. Just today a nurse at a rheum office "accommodated" my request to mask by wearing it on her chin. Hospitals Deny Immunocompromised Patients #ADA Requests For Masks via @forbes https://t.co/ljSPxTX3I9 #immunosuppression #masks #ethics @MassGenBrigham @UCSFHospitals Thx to @juliairzyk @DorfmanDoron @pjavidan @SFdirewolf @sdaction1 @mattbc Hospitals Deny Immunocompromised Patients #ADA Requests For Masks via @forbes" [X Link](https://x.com/amymitchellart/status/1757699032359510420) 2024-02-14T09:31Z [----] followers, [----] engagements "When I requested accommodations for my endoscopy procedure for which I had to unmask I asked for staff to wear N95s to prep and recover in a private area and to be allowed to wear my mask at all times except during the procedure. Denied. Similar to requests denied by UCSF" [X Link](https://x.com/amymitchellart/status/1757705037336224066) 2024-02-14T09:55Z [----] followers, [---] engagements "Even accommodations agreed to by compromise were not followed. Staff were to wear surgical masks but the anesthesiologist arrived unmasked. I was made to unmask to have my mouth examined. My N95's seal was broken in the shared prep and recovery areas by oxygen tubes underneath" [X Link](https://x.com/amymitchellart/status/1757705946971713999) 2024-02-14T09:58Z [----] followers, [---] engagements "@M8Void 3M has links to buy masks on their website. They won't verify purchases from Amazon unfortunately. But they did verify that the case of Aura 9205+ I purchased from Home Depot were the real thing" [X Link](https://x.com/amymitchellart/status/1758635623362204053) 2024-02-16T23:33Z [----] followers, [---] engagements "I thought my lymphocytes (T and B cells) were on the mend [---] months after acute COVID but they were just riding the LC Rollercoaster. π’ Back down I go" [X Link](https://x.com/amymitchellart/status/1758640174991659287) 2024-02-16T23:51Z [----] followers, [----] engagements "To anyone wondering why #Truvada the TDF version with worse potential side effects is being trialed for #longCOVID instead of another form of the drug it's because TDF has more potential to treat COVID than the TAF form" [X Link](https://x.com/amymitchellart/status/1761287433373511701) 2024-02-24T07:10Z [----] followers, [---] engagements "@plagueprose I use "at the beginning of the pandemic" to refer to that time. Whereas now we're in the later denial period or "after the government ended the COVID emergency."" [X Link](https://x.com/amymitchellart/status/1761870702565572643) 2024-02-25T21:48Z [----] followers, [---] engagements "@TristanVeness Cats don't have access to GS-441524 either. Gilead has the cure for FIP but won't release an older drug with a shorter profit patent life. Thanks @GileadSciences for letting cats die" [X Link](https://x.com/amymitchellart/status/1762201628239704105) 2024-02-26T19:43Z [----] followers, [---] engagements "@AnciraBecky Many hospitals allow negotiation of bills assistance programs and reduction or elimination of balances based on the patient's income. The billing department should be able to guide you to applications for these programs. The paperwork stinks but this has worked in my favor" [X Link](https://x.com/amymitchellart/status/1763051956929499432) 2024-02-29T04:01Z [----] followers, [---] engagements "The metal-free N95 model that I'd used for [--] previous MRIs failed during today's procedure. Perhaps it was the extended wear time of 90+ min or changing temperatures (outdoors indoors cool MRI tube) but the mask had severe condensation inside by the time the procedure began" [X Link](https://x.com/amymitchellart/status/1763063015774044618) 2024-02-29T04:45Z [----] followers, [---] engagements "I definitely have claustrophobia but the wet interior of the mask in the tight low air space was suffocating. Moisture was dripping back onto my face. As determined as I was to protect myself I couldn't take it. I had to exit the tube and remove my mask to complete the MRI" [X Link](https://x.com/amymitchellart/status/1763063017317577138) 2024-02-29T04:45Z [----] followers, [--] engagements "The imaging technicians that had been masked greeted me maskless when I exited the machine though I convinced them to put them back on at the end of the procedure. This was far more risk than I'd anticipated. The strongest wills and best equipment can fail; that happened today" [X Link](https://x.com/amymitchellart/status/1763063019385257994) 2024-02-29T04:45Z [----] followers, [--] engagements "I can't undo what happened. My only alternative was to cancel the procedure and try again another day with a different mask. But I've been living with ongoing heart damage since September. It took serious determination for me to complete that intense procedure as it was" [X Link](https://x.com/amymitchellart/status/1763063021381804417) 2024-02-29T04:45Z [----] followers, [---] engagements "If anyone has suggestions for a valved metal free mask that can be used in MRI machines I am interested. As for the consequences of breathing hospital air I'll have to wait and see. Thanks everyone for the support and advice on gadolinium allergy prep- that part went well" [X Link](https://x.com/amymitchellart/status/1763063023445348846) 2024-02-29T04:45Z [----] followers, [---] engagements "@AnneMarieFlynn2 I wished the staff around me had stayed masked while I was unmasked in the MRI. But when I had to come out of the tube they had unmasked" [X Link](https://x.com/amymitchellart/status/1763348427910377619) 2024-02-29T23:40Z [----] followers, [--] engagements "#CDCkills π The new CDC guidelines are standards for never-ending sickness death and disability. Voice your outrage: send CDC a message here: I am devastatedI saw with my eyes whats coming from CDC tomorrow. My sources told me on what their rationale is based. And based on what I know (epidemiologist for [--] years)it is complete bullshit crafted on thin flimsy data. I cant believe CDC has such incompetent leaders.π§΅ https://t.co/7qlxxdHwdj I am devastatedI saw with my eyes whats coming from CDC tomorrow. My sources told me on what their rationale is based. And based on what I know" [X Link](https://x.com/amymitchellart/status/1763491583243046935) 2024-03-01T09:08Z [----] followers, [----] engagements ""Top of mind" means "first to die" under new CDC COVID guidelines. Thanks for thinking of the vulnerable Mandy. We sure do appreciate being a priority. πͺ¦ #CDCkills "'So the folks who are more vulnerable were top of mind when we did this' CDC Director Dr. Mandy Cohen told CBS News." π https://t.co/djXa9jYepn https://t.co/ZuY8QM1NW7 "'So the folks who are more vulnerable were top of mind when we did this' CDC Director Dr. Mandy Cohen told CBS News." π https://t.co/djXa9jYepn https://t.co/ZuY8QM1NW7" [X Link](https://x.com/amymitchellart/status/1763696263453647237) 2024-03-01T22:42Z [----] followers, [---] engagements "@AnciraBecky Thank you βΊ I hope that by sharing my story it helps all of us" [X Link](https://x.com/amymitchellart/status/1764453365444931943) 2024-03-04T00:50Z [----] followers, [--] engagements "@MahlerAdam @LCawarenessInt @LCDCmarch15 That's because there are no image filters" [X Link](https://x.com/amymitchellart/status/1764454135754055830) 2024-03-04T00:53Z [----] followers, [--] engagements "@AnciraBecky Guinea pigs have a lot to say" [X Link](https://x.com/amymitchellart/status/1764464922958663990) 2024-03-04T01:36Z [----] followers, [--] engagements "I've experienced T and B cell deficiency since my COVID infection in [----]. In the past year I've developed anemia with low red blood cells hematocrit hemoglobin and ferritin. These are exactly the #LongCovid symptoms that would be expected with a bone marrow infection. Very interesting poster from @UCSF & @uhmanoa on #LongCovid: SARS-CoV-2 infects hematopoietic stem cells which is proposed as the root cause of Long COVID. https://t.co/VGGGArc7xs https://t.co/GGQ3lhQAW3 Very interesting poster from @UCSF & @uhmanoa on #LongCovid: SARS-CoV-2 infects hematopoietic stem cells which is proposed as" [X Link](https://x.com/amymitchellart/status/1766249361271398701) 2024-03-08T23:47Z [----] followers, [----] engagements "@CovidComunidad @zalaly @denise_dewald @D_Bone @LauraMiers @Vickyvdtogt @Amal4Solutions @MVGutierrezMD @chydorina @healingfromlc @microbeminded2 @drseanmullen @I_need_a_razor @rubyslippahs @guty2370 @G_Commish I've been helped by immuneglobulin monoclonal antibodies (not currently available) maraviroc truvada Tollovid/gromwell root. Paxlovid only reduced positivity (antigen/viral load) in acute phase for me. Antihistamines beta blockers hydroxychloroquine for autoimmunity etc" [X Link](https://x.com/amymitchellart/status/1767037249412309346) 2024-03-11T03:58Z [----] followers, [---] engagements "@CovidComunidad @zalaly @denise_dewald @D_Bone @LauraMiers @Vickyvdtogt @Amal4Solutions @MVGutierrezMD @chydorina @healingfromlc @microbeminded2 @drseanmullen @I_need_a_razor @rubyslippahs @guty2370 @G_Commish I've never tried metformin Remdesivir or statins though some have been helped. I'm on many supplements though it's hard to say whether any are helping with viral persistence; mostly they target inflammation allergies and nutrient deficiencies" [X Link](https://x.com/amymitchellart/status/1767037713851556150) 2024-03-11T03:59Z [----] followers, [--] engagements "@CovidComunidad @zhang_yueting @zalaly @denise_dewald @D_Bone @LauraMiers @Vickyvdtogt @Amal4Solutions @MVGutierrezMD @chydorina @healingfromlc @microbeminded2 @drseanmullen @I_need_a_razor @rubyslippahs @guty2370 @G_Commish I'm on doxycycline. It's prescribed for Lyme and acne. Hard to know if it helps me with long COVID since I've been on it almost continuously since 2016" [X Link](https://x.com/amymitchellart/status/1767038587214700879) 2024-03-11T04:03Z [----] followers, [--] engagements "@CovidSolidarit1 I can cross my fingers like Louis. But Charlotte's dress (left waist) heal with a section of the pavement and sleeve disappearing over her hand are sloppy photoshop edits" [X Link](https://x.com/amymitchellart/status/1767039704103301339) 2024-03-11T04:07Z [----] followers, [---] engagements "As people with #longCOVID & our allies begin travel to @LCDCMarch15 #LongCovidAwarenessDay I want to encourage participants with my LC story: Infection & Activism. Though we're suffering and our numbers growing coming together is a great accomplishment" [X Link](https://x.com/amymitchellart/status/1767055935078363160) 2024-03-11T05:12Z [----] followers, [----] engagements "We have come a long way in [--] years from FB support groups and Twitter hashtags naming and defining our illness creating awareness campaigns online and in the media to actions and events that gain international attention. We have much further to go for LC tests and treatments" [X Link](https://x.com/amymitchellart/status/1767055936483479719) 2024-03-11T05:12Z [----] followers, [--] engagements "@zhang_yueting Even the illustrator is in on the spouse abuse: picturing the protections and thus the spouse as a burden. What a terrible article Shame on @NPR for publishing this" [X Link](https://x.com/amymitchellart/status/1767356356191735941) 2024-03-12T01:06Z [----] followers, [--] engagements "@CovidSolidarit1 Real faces caught on honest film with no digital photo algorithm cleanup or photoshop editing. I miss honest photography. Even my phone camera edits out blemishes and wrinkles" [X Link](https://x.com/amymitchellart/status/1767358789672390708) 2024-03-12T01:15Z [----] followers, [--] engagements "Lucky COVID number [--] Wednesday's immunology & dysautonomia appointments gave a parting gift. Woke up with a sore throat today though I've felt off since Thurs. Was it my dad who drove me who tested negative & wore N95 the whole time Or unmasked HCW/patients at [--] hospitals" [X Link](https://x.com/anyuser/status/1767651416967922110) 2024-03-12T20:38Z [----] followers, 30.5K engagements "I'm fighting infection number [--] as of today. Caught COVID at healthcare appointments last week. All patients and healthcare staff were unmasked. I've had to cancel in-person work purchase tests and I may have to buy more Paxlovid if I rebound. Help needed. Again. π I caught my 6th COVID infection on Aug 31st at a hospital. I had to unmask for a medical procedure. I tested positive for an entire month. My ability to work has been greatly reduced since then. My heart was damaged. β€π©Ή Help needed and appreciated. https://t.co/0RlbfJ5c8y I caught my 6th COVID infection on Aug 31st at a hospital." [X Link](https://x.com/anyuser/status/1767667985047818390) 2024-03-12T21:44Z [----] followers, 34.4K engagements "I applied for @pfizer's #Paxlovid #paxcess discount card. It can be used every [--] days. But because I have insurance and insurance won't cover more than [--] box every [--] months the discount doesn't work. I was offered the possibility of cash pay: Paxlovid is $1600/box. I have a box of Paxlovid. My insurance will only cover [--] box every [--] months. Pax costs $1600/box. I needed [--] boxes in September. Immune compromised patients need better treatments available like mAbs and better access to antivirals. New antivirals for acute and LC are needed. I have a box of Paxlovid. My insurance will only cover" [X Link](https://x.com/amymitchellart/status/1768006597496762372) 2024-03-13T20:09Z [----] followers, [---] engagements "@atranscendedman Nah. Increasing Pfizer's profits. The government purchased boxes which we the people paid for will now be wasted. These could have been given free or cheap (I bought one for $20 in Sept). New approved Pfizer Paxlovid is $1600/box" [X Link](https://x.com/amymitchellart/status/1768134434279035339) 2024-03-14T04:37Z [----] followers, [--] engagements "@kfgibson I know And now Pfizer will profit off it twice They sold it to the government threw it out (possible tax credit here for some entity) so now people or insurance have to pay full price for the same drug" [X Link](https://x.com/amymitchellart/status/1768143217856241883) 2024-03-14T05:12Z [----] followers, [---] engagements "@LauraMiers @dbdugger @CovidComunidad @MBVanElzakker @calirunnerdoc @drlangosta @healingfromlc @NeurologistMom @WesElyMD @angryhacademic @NeuroImmuneGuy @microbeminded2 @DYork1979 @chydorina @MVGutierrezMD @DaniBeckman Ritonavir has been out for a very long time as a HIV antiviral" [X Link](https://x.com/amymitchellart/status/1769125284475748491) 2024-03-16T22:15Z [----] followers, [---] engagements "COVID Lyme babesia bartonella chickenpox strep: common chronic infections can trigger autoimmune neurological issues in kids and adults. When onset is in childhood the conditions are called #PANS or #PANDAS. Treatment of the infections is key. (Full interview in thread ) π£ THE KIDS ARE NOT ALRIGHT OCD/ ANXIETY/ DEPRESSION/ TICS/ RAGE/ PANS/ PANDAS/ cant function at school anymore My latest is w neurologist Dr. Elena Frid top expert on infections that cause neuro-psych disorders. Few have expertise while π explodes w kids who need help https://t.co/TxENXxJeMe π£ THE KIDS ARE NOT ALRIGHT OCD/" [X Link](https://x.com/amymitchellart/status/1770377805139792117) 2024-03-20T09:12Z [----] followers, [---] engagements "I called Pfizer's Paxcess helpline number. Confirmed insurance would need to approve for copay card to work. All insurance needed to do was approve and pay anything: $1. Pfizer would pay the rest. Insurance said no and demanded prior auth which will cost far more than $1 in time" [X Link](https://x.com/amymitchellart/status/1771112123118072199) 2024-03-22T09:50Z [----] followers, [----] engagements Limited data mode. Full metrics available with subscription: lunarcrush.com/pricing
@amymitchellart Amy MitchellAmy Mitchell posts on X about insurance, igg, in the, virus the most. They currently have [-----] followers and [----] posts still getting attention that total [------] engagements in the last [--] hours.
Social category influence finance stocks countries technology brands us election currencies celebrities social networks ncaa football musicians
Social topic influence insurance, igg, in the, virus, health, mask, staff, caught, to the, if you
Top assets mentioned Pfizer, Inc. (PFE) Gilead Sciences, Inc. (GILD) April (APRIL) Oxygen (OXY) Spike (SPIKE)
Top posts by engagements in the last [--] hours
"@amylestoye I haven't priced one yet. Not sure if Julian HC treats mold issues. Working on hormones first. And I'm herxing tonight too. Upped malarone dose again"
X Link 2019-01-25T03:38Z [----] followers, [--] engagements
"@amylestoye @bennessb It's a type of yeast probiotic that inhibits bacterial and fungal overgrowth. Both Dr M and Dr S wanted me on it while I take antibiotics"
X Link 2019-02-14T16:12Z [----] followers, [--] engagements
"@amylestoye I'm hoping my IG therapy will help fight EBV. I can't go off singulair or claritin. I'd never heard of oliverex"
X Link 2019-04-22T16:41Z [----] followers, [--] engagements
"@LonnieRhea What's your take on Biocidin as a biofilm buster I tolerate all kinds of antibiotics but taking metronidazole or grapefruit seed extract is too much for me to handle. Today my NP recommended I try Biocidin. I must have a bad build-up of biofilms to have such severe reactions"
X Link 2019-05-21T05:15Z [----] followers, [--] engagements
"@dralmiller @amylestoye What are some alternatives to flagyl if its not well tolerated My doctor had me taking it [--] days a week but it caused fatigue to exhaustion. Trying Biocidin but even [--] drop once a day is causing problems with sleep mood and energy"
X Link 2019-06-22T16:51Z [----] followers, [--] engagements
"@stiffnessler @marybethpf @IDSAInfo @LymeBook artemisisin banderol samento houttuynia cryptolepsis and so many probiotics antifungals antihistamines and other supplements. Focused on treating bartonella and babesia right now. I was wrongly diagnosed with MS so I understand the overlap of neurologic symptoms"
X Link 2019-11-21T19:03Z [----] followers, [--] engagements
"@stiffnessler @marybethpf @IDSAInfo @LymeBook Forgot grain free diet and biocidin. Recently discovered mold in home; remediation pending. With a previous doctor combinations tried in order: doxy/azith cefuroxime/tinidazole/clarithromycin doxy/rifampin/cefuroxime. Rifampin worked for bart but drained my T4"
X Link 2019-11-21T19:09Z [----] followers, [--] engagements
"@woodchuck412 @rb_long @longestrecovery @CatiaLookin I haven't used Pinella for Lyme or COVID. The extracts I'm taking are houttuynia cat's claw/samento and biocidin"
X Link 2021-04-22T17:13Z [----] followers, [--] engagements
"@SenSherrodBrown Cutting the additional $300 isn't just an insult it's impossible to live on the minimum $189/week. I'm a pet sitter struggling to make my business recover. Clients are booked for the rest of the summer but income is halved. Dewine wants me to abandon my clients for another job"
X Link 2021-05-14T16:23Z [----] followers, [--] engagements
"@elizabethics @RollingStone Can anyone give me a link to get past the paywall"
X Link 2021-12-23T04:45Z [----] followers, [--] engagements
"@j_b_kennedy @EnemyInAState It wasn't tollovid but I took a different brand of gromwell root/lithospermum erythrorhizon when I was exposed to COVID in January. I was able to get through with [--] days of milder symptoms. I took it [--] weeks hoping it would impact long COVID. However this herb reduces TSH"
X Link 2023-04-09T17:38Z [----] followers, [---] engagements
"@mollistan Yes. I'm on immuneglobulin for IgG immune deficiency but it also reduces autoimmunity. Singulair helps with allergies and MCAS"
X Link 2023-04-13T23:12Z [----] followers, [--] engagements
"@Saltykid41 @CovidCastaways He has his own equipment in his RV"
X Link 2023-07-10T18:41Z [----] followers, [--] engagements
"@dsethlewis I've done [--] home sleep studies. The first time hypoxia was detected. The second apnea. However since I slept for [--] hours the ratio of my sleep disturbances compared to normal sleep wasn't high enough to be diagnosed. I was told to sleep a shorter duration to get treatment"
X Link 2023-07-11T20:43Z [--] followers, [--] engagements
"@LundinAdvocates I had to go ahead with Neko's ACL surgery because her right hip was going to be destroyed trying to support her whole back end. She could barely move and kept falling and scooting. The alternative was putting her down; that seemed wrong. Sharing helps too"
X Link 2023-07-12T02:11Z [----] followers, [---] engagements
"@LundinAdvocates Not sure if I'll be able to make payments or if I'll have to charge the surgery. I was going to wait til I had the money but it was going to be too long for Neko. I'm not going to have a large extra store of cash as long as LC medical expenses continue"
X Link 2023-07-12T02:11Z [----] followers, [--] engagements
"@danaparish I'm sensitive possibly allergic to DEET. I spray Sawyer's permethrin on my shoes every spring and use Natrapel's picardin tick and mosquito repellant. These [--] work great together"
X Link 2023-07-12T19:37Z [----] followers, [--] engagements
"Like HIV SARS-COV2 infects and depletes CD4 T cells but not CD8. Are we allowed to say CAIDS or CoV-AIDS yet Many #pwLC are experiencing lymphocytopenia years after acute infection. #COVID19 #longCOVID #AIDS https://elifesciences.org/articles/84790 https://elifesciences.org/articles/84790"
X Link 2023-08-08T00:48Z [----] followers, 82.6K engagements
"@pookleblinky Thank you for this educational post. I've been dealing with bloating diarrhea and anemia along with fatigue and neuro issues. Like the giardia I suffered with for [--] years no doctor thought of testing this petsitter for a common zoonotic illness. Now I'll get tested. πͺ±"
X Link 2023-08-11T17:55Z [----] followers, 19.9K engagements
"@briimii @meowmix505 Had a group pre-LCAP called TLC NOW. The acronym stood for Treat Long COVID Network of Warriors"
X Link 2023-08-20T07:16Z [----] followers, [--] engagements
"Keep masks in healthcare to protect patients and medical professionals. Medical staff should wear N95 respirator masks because #CovidIsAirborne. It is negligence for infections to be allowed to spread in medical facilities"
X Link 2023-08-23T01:53Z [----] followers, [----] engagements
"My CD4 has been around [---] and CD3 low since COVID. CD19 B cells are very low. All I've been offered is prophylactic meds for opportunistic infections. Unlike my IG T and B cells can't be replaced by IV. We need antiviral therapy to stop the depletion of lymphocytes by SARS-COV2"
X Link 2023-08-25T23:15Z [----] followers, [----] engagements
"I experienced symptom improvement and my lymphocytes subsets normalized in the year I was on Evusheld. I've never been offered antivirals. Monoclonal antibodies need updated and trialed as combination therapy for #longCOVID"
X Link 2023-08-29T14:56Z [----] followers, [---] engagements
"@systematic_fun @2C2040 @PH___PH COVID walks right in past my immune defenses. First interferon [--] fails because APS1 took it out. Then IgM fails to respond because of CVID. IgG and T cells finally take action but they aren't meant to be the first line defense in normal immunity"
X Link 2023-08-30T07:55Z [----] followers, [--] engagements
"@JoePhilosophe .antivirals and antifungal meds for opportunistic infections as they happen or continued prophylaxis of various anti-infective meds as I am receiving. There is no way to put more T or B cells or IgA or IgM back into a deficient body. Acknowledgement of immune deficiency"
X Link 2023-08-31T00:21Z [----] followers, [--] engagements
"Binax tests are negative Flowflex nasal swab only are negative and Flowflex nasal + oral swabs are as confusing as the Lucira. Exposure date was August 31st at hospital for colonoscopy/endoscopy. Fever on Friday sore throat headache achy face tired nightmares. #COVID19"
X Link 2023-09-03T18:42Z [----] followers, [----] engagements
"When hospitals say "You can't prove you got COVID here" instead of "You couldn't have caught it here" that's an infection control problem. Hospitals are using surface sanitization to control an airborne infection. Patients & staff aren't tested so responsibility can be denied"
X Link 2023-09-05T20:44Z [----] followers, 10.7K engagements
"When the gov says "we have the tools" they mean they do not the rest of the population. I caught COVID during a procedure at a hospital last week. My doctor wants me to take [--] days of paxlovid bc I'm immune deficient and have LC. Insurance approved [--] days and no more until 2/24"
X Link 2023-09-06T23:20Z [----] followers, 194.3K engagements
". my hospital acquired infection. There is nowhere safe for people with immune deficiency to be and there is no adequate help available when we get sick. The gov policy is eugenics. The hospital told me to prove I got COVID there. No responsibility. #keepmasksinhealthcare"
X Link 2023-09-06T23:28Z [----] followers, 17.1K engagements
"*I tried to pay for the extra course of Paxlovid because insurance wouldn't cover it. Due to its EUA status I can't receive Paxlovid without insurance approval and there is no way to purchase it otherwise. #Paxlovid"
X Link 2023-09-06T23:36Z [----] followers, 15.4K engagements
"@longcovid_adri It would take weeks for me to find a brand of metformin that's gluten and corn free. I would have to contact manufacturers and then the pharmacy would need to order. No I can't pay for paxlovid. Without insurance coverage the pharmacy can't sell it to me. I tried"
X Link 2023-09-07T00:40Z [----] followers, [----] engagements
"@the4thcolour I did a Binax RAT test the day of the procedure which was negative"
X Link 2023-09-07T06:28Z [----] followers, [----] engagements
"@JoshuaPribanic How about we're not going to vote for Biden unless he takes LC and transmission seriously Because the mask ban mentality coming from Republicans is an even worse option"
X Link 2023-09-08T00:34Z [----] followers, [---] engagements
"@dbdugger Any idea why those particular oils were chosen"
X Link 2023-09-09T07:02Z [----] followers, [--] engagements
"I started Paxlovid for my hospital acquired COVID infection on the day the @POTUS joked about not masking. COVID isn't funny and masks could have prevented my infection. History rhymes. When Joe Biden joked at a Sept. [--] White House event about not wearing a mask following a known COVID exposure it drew eerie parallels to the Reagan administration's mishandling of the AIDS epidemic. Their apathy wasn't funny then and it isn't funny now. #MaskUp https://t.co/doCgHA7KS8 History rhymes. When Joe Biden joked at a Sept. [--] White House event about not wearing a mask following a known COVID exposure"
X Link 2023-09-09T07:22Z [----] followers, 18.6K engagements
"If you were able to get an extra course of #Paxlovid (more than [--] days) how did you do this NIH recommends longer courses for immune deficient patients but my infectious disease doctor refuses. PCP tried PA; insurance declined. Can't pay cash price if pharmacy has gov supply"
X Link 2023-09-09T19:48Z [----] followers, [----] engagements
"@CovidCastaways Insurance won't cover another paxlovid pack until February. This was the first time I received a pax rx in advance and I got COVID [--] days later at the hospital. Hard to save my supply when it's only covered every [--] months"
X Link 2023-09-09T19:55Z [----] followers, [---] engagements
"@D_Bone Border collie No it wasn't lassie Lassie was a rough collie"
X Link 2023-09-10T20:17Z [----] followers, [--] engagements
"I was able to get a second [--] day pack of #Paxlovid at a different pharmacy. My insurance refused to cover more but the pharmacy used an override to allow another pack from the gov supply. It's unlikely I could get any more until February. Big thanks to my doctor who called"
X Link 2023-09-10T22:33Z [----] followers, 11.8K engagements
".a pharmacy on a Saturday so I wouldn't miss a dose. While paxlovid hasn't been trialed or approved for courses longer than [--] days NIH recommends extended courses of Paxlovid for immune compromised and deficient patients:"
X Link 2023-09-10T22:33Z [----] followers, [----] engagements
"@Guiness_Pig It's a scary time to wear masks. Earlier this summer I was assaulted with a marine air horn while walking my dog. This left us both with hearing damage. On Friday's walk a man within half a block pulled out a gun so we could see it and a car came within [--] feet of hitting my dog"
X Link 2023-09-11T20:20Z [----] followers, [--] engagements
"@_bahhumbug I was assaulted with a marine air horn while walking my dog earlier this summer. We both have hearing damage. On Friday while masked walking in town with my dog a man pulled out a gun while we were walking towards him. Later my dog was nearly hit by a car at a crosswalk"
X Link 2023-09-11T21:41Z [----] followers, [--] engagements
"Does anyone know if #tollovid/gromwell root/lithospermum erythrorhizon/zi cao (one herb many names) has an anti-inflammatory effect I hate taking it because it drops my TSH for months but I'm on day [--] of paxlovid and my lungs ache O2 drops when walking. #COVID19 #Covid"
X Link 2023-09-12T01:02Z [----] followers, [----] engagements
"My FlowFlex tests are giving warped results. I think I have a new variant. I'm naming it CurVID. Day [--] of Paxlovid. Infected August 31st during medical procedure at hospital. #COVID19"
X Link 2023-09-13T21:05Z [----] followers, 27.1K engagements
"@WangCandice Around [--] minutes Negative at [--] though there seemed to be a faint + line developing. So I watched it and ended up with the curvy mess in the pic"
X Link 2023-09-13T23:53Z [----] followers, [---] engagements
"Infected on August 31st at hospital for an endoscopy/colonoscopy. Positive RAT on Sept 2nd. [--] days of Paxlovid later: still positive. Another [--] days of Paxlovid bc I have no other options. Immune deficient patients need better medical protections π· and treatments for #COVID19"
X Link 2023-09-14T21:00Z [----] followers, 100.5K engagements
"@JaneCrowder16 I don't know. Maybe if I were young and cute famous a mother of an adorable baby or a puppy with a broken leg I would get more donations. Some people have told me I don't deserve to live or receive treatment"
X Link 2023-09-15T19:52Z [----] followers, [--] engagements
"@Stanzupforit @D_Bone I'm way too tired to engage in a women in religion debate tonight. But the trouble has been political white nationalism in the US or other similar tactics worldwide. religion has been empowering to women in other countries that haven't merged politics + religion"
X Link 2023-09-17T06:38Z [----] followers, [--] engagements
"What's the longest amount of time anyone has been prescribed #paxlovid I tested positive Sept 2-14 negative on 17th and took my 15th and final pill in morning on 20th. Today my sore throat returned. I'm wondering if I should take pax if I'm positive again"
X Link 2023-09-21T19:29Z [----] followers, [----] engagements
"Tested positive for #COVID Sept 2nd after exposure Aug 31st. On #Paxlovid Sept 5-20. Tested + Sept [--] - Sept [--]. Symptoms resumed Sept [--]. I tested + again today. Pharmacy refusing to fill Pax again. There are no tools for the immune deficient. I'm in rebound with help cut off"
X Link 2023-09-22T21:02Z [----] followers, 36.2K engagements
"The hospital that so carelessly infected me during an endoscopy is escaping liability because I can't prove I caught COVID there. I've lost an entire month of my life so far. COVID tests aren't free and treating reactivated Lyme required IV antibiotics in 2020"
X Link 2023-09-28T22:21Z [----] followers, [----] engagements
"I have evidence of heart damage from COVID: my troponin I levels are high. No one but the ER will see me because I was recently COVID + but no one will treat that infection either. I'd risk additional infection by going to ER or hospital only to be denied Paxlovid"
X Link 2023-09-28T22:21Z [----] followers, [----] engagements
"I'm taking my chances at home gambling that my sudden sweating is Lyme or POTS. These conditions can appear identical to a heart attack. No one wants to go the extra mile or think out of the box for an immune deficient patient. We're liability hot potatoes. So I'm on my own"
X Link 2023-09-28T22:21Z [----] followers, [----] engagements
"Month-long #COVID19 infections aren't without consequences. For those of you that have experienced cardiac issues talk to me. What's myocarditis like EKG and D-dimer are ok. I had a sweating + feverish episode after taking out the trash [--] nights ago"
X Link 2023-09-29T22:12Z [----] followers, [----] engagements
"I made it [--] days off of #Paxlovid only to test positive again. I've had COVID all of September. [--] days of Pax wasn't enough. Chain pharmacies won't fill another rx; local pharmacies refuse bc I'm using telehealth. Local docs aren't familiar w/ immune deficiency. =No more Pax"
X Link 2023-09-30T21:13Z [----] followers, 49.7K engagements
"@amethystarlight I haven't cut ties with him because I needed my IG rx renewed. Insurance was demanding an in-person visit. I have another immuno but she's out on maternity leave. I had to keep the COVID minimizer. It was so hard not to burn that bridge. π₯"
X Link 2023-09-30T22:40Z [----] followers, [---] engagements
"@Hardasshelen I caught COVID Aug 31st during an outpatient endoscopy procedure. Ran a fever Sept 1st. Tested positive Sept [--]. Started Paxlovid Sept 5th. Most recent positive test is Sept 30th. All. Of. September"
X Link 2023-09-30T23:17Z [----] followers, [----] engagements
"@ParentMishmash @LoriDTindall Creating an account will give you an option to sign up for IDF news see video series and use the physician finder. They don't spam. I found it helpful. A good organization"
X Link 2023-10-03T00:21Z [----] followers, [--] engagements
"@M8Void I have tried quarantining crating blocking the basement cat door to keep them in Prozac feliway various cat litters. On occasion they will choose to be inside and I indulge that hoping they will stay. In bad weather I keep them in even if they retaliate but it's gross"
X Link 2023-10-03T02:37Z [----] followers, [---] engagements
"@scott_squires Disney has the same COVID policy has hospitals and medical facilities: COVID is here but it's not our problem. It's yours"
X Link 2023-10-03T03:09Z [----] followers, [---] engagements
"@greg_travis @Walgreens Caresource only covers drugs purchased at CVS since it's part of Caremark. If Caresource doesn't cover COVID vaccination at CVS that's terrifying. I know from experience Caresource only covers [--] pack of Paxlovid every [--] months. Want us to die of COVID Caresource No vax no pax"
X Link 2023-10-04T08:59Z [----] followers, [---] engagements
"During my month long Sept #COVID19 infection my doctor prescribed an extended course of #Paxlovid following NIH recommendations for immune compromised patients. Insurance and pharmacies denied filling more than [--] box. I tested positive 9/30 yet I had to stop treatment"
X Link 2023-10-13T04:11Z [----] followers, [----] engagements
"Yesterday I went back to the hospital where I caught COVID to begin the process of evaluating my heart damage from the virus. I wore N95 and face shield. It is noted and flagged in my chart that I'm immune compromised and request that staff mask. The doctor was acting strangely"
X Link 2023-10-14T22:11Z [----] followers, 433.2K engagements
".infection control at medical facilities Why would someone as intelligent as a doctor dance around the edges of a room to avoid infection transmission Then he suggested pulmonology to evaluate my lung capacity every bit as dangerous as the endoscopy that infected me"
X Link 2023-10-14T22:11Z [----] followers, 71.6K engagements
"My dog was diagnosed at [--] years old with dementia. She was exhibiting "sun downing" behavior like early Alzheimers. At that point she'd been exposed to [--] COVID infections by me. She couldn't sleep at night cried in confusion paced in circles and exhibited OCD behaviors. Screw humans and Covid as a topic for once. Dogs. Want your dog to be as smart as it has ever been Don't let it catch Covid. My dog is a Novid Dog. No dog parks no trips to Lowe's and no face kisses from people. Just long walks and cuddling with Dad. https://t.co/RAVAE04ruR Screw humans and Covid as a topic for once. Dogs."
X Link 2023-10-16T19:12Z [----] followers, 110.5K engagements
"@PardonMyPain @hwozcmedo Sometimes dogs are diagnosed with OCD or CCD. It depends on what's causing the behavior"
X Link 2023-10-17T03:17Z [----] followers, [--] engagements
"@mildTin Aim for the moon hit the fence post. But never aim for the fence post if you want a moonshot"
X Link 2023-10-20T07:37Z [----] followers, [---] engagements
"Update on AstraZeneca's Evusheld [--] Supernova monoclonal antibodies prophylaxis for COVID trial from ID Week conference: #Evusheld #COVID19"
X Link 2023-10-21T22:34Z [----] followers, [----] engagements
"#LongCOVID has a $50 billion research need. According to apolitical GPT4 analysis:"
X Link 2023-10-23T20:21Z [----] followers, [---] engagements
"A single #COVID infection acquired during a procedure at a hospital has so far triggered: month-long infection heart damage neuro Lyme reactivation shingles vasculitis blood clotting new autoimmunity. This is on top of all the other conditions COVID's previously given me"
X Link 2023-10-24T00:27Z [----] followers, 41.5K engagements
"My previous COVID infections have already caused: thyroiditis hypoparathyroidism immune deficiency POTS dysautonomia MCAS neuropathy insomnia night terrors hypoxia anemia malabsorption chronic diarrhea cognitive impairment exercise intolerance dairy allergy"
X Link 2023-10-24T00:37Z [----] followers, [----] engagements
"@mryoung151 @DrEricDing @mtosterholm @SherrodBrown I can't believe you're siding with Vance. As an immune compromised voter in Ohio I'm not going to forget that you don't care if I'm safe. I can't get medical care without being exposed to COVID because no one there is masked. I caught COVID when I had an endoscopy"
X Link 2023-10-26T05:57Z [----] followers, [----] engagements
"@mryoung151 @DrEricDing @mtosterholm @SherrodBrown @SherrodBrown look at this This is what happens when there aren't mask mandates in places where immune compromised people need to go. Masks are a disability accessibility issue. COVID isn't over: I caught it August [--] while having a routine endoscopy"
X Link 2023-10-26T06:02Z [----] followers, [---] engagements
"@mryoung151 In [----] I spent $23143 on health insurance medications deductible/OOP and supplements. The majority was vitamins supplements/herbal treatments and OTC medications. I had to add nonprescription treatments for Lyme and LC or I wouldn't have been able to work to get my"
X Link 2023-10-28T19:48Z [----] followers, [--] engagements
"On August 31st I went to a hospital for an outpatient endoscopy/colonoscopy to evaluate anemia. I had to unmask. I left with #COVID. The staff mostly wore surgical masks. The anesthesiologist arrived with his mask off. Patients deserve better than sloppy infection control. Got Germs Coming to a Hospital Near You. Hospitals should be a place where everyone can go to feel safe. The CDC shouldn't be making us choose between getting care and getting Covid That's not healthcare https://t.co/ZUAVQfpckK Got Germs Coming to a Hospital Near You. Hospitals should be a place where everyone can go to"
X Link 2023-10-29T20:40Z [----] followers, 13.7K engagements
"Homeless COVID longhauler @froglet80 had a fire at their camp tonight that destroyed everything they owned. Emergency help is needed Paypal saltykid41@gmail.com Other payment methods are in their pinned tweet but they can access PayPal most easily. #MutualAidRequest"
X Link 2023-10-30T02:14Z [----] followers, [----] engagements
"@D_Bone I don't have confidence that Biden will either physically survive or retain adequate mental faculties through another term. One of those is going to have him out of office. I would vote for a propped up corpse over Trump but I shouldn't have to"
X Link 2023-10-30T23:36Z [----] followers, [--] engagements
"@CountingCrows I might have played Amy Hit the Atmosphere like a theme song for obvious reasons. One of the many premonitions about my future life with chronic illness"
X Link 2023-11-01T21:16Z [----] followers, [---] engagements
"@D_Bone @nic_moneypenny have you tried speech to text programs My brother used to use something called Dragon back in college. Might be able to talk to type the vast majority of a document"
X Link 2023-11-02T02:26Z [----] followers, [---] engagements
"@D_Bone @nic_moneypenny That or read audio books. Your voice is great at least to my American ears"
X Link 2023-11-02T02:30Z [----] followers, [--] engagements
"@frd_w_k @JessicaLexicus Since we are about to repeat the stakes of [----] I can't do it. My consolation is that Biden won't survive another [--] years in office. A consequence of old age or the COVID pandemic he denied will take him down. And then the next election cycle will be free of both B and T"
X Link 2023-11-10T04:51Z [----] followers, [--] engagements
"Yes. Measures need to be taken to prevent infections from being acquired in medical settings. I lost an entire month of my life to a #COVID infection acquired during an outpatient procedure. I have heart damage a new autoimmune condition and worsened long COVID"
X Link 2023-11-11T22:47Z [----] followers, [----] engagements
"After my September #COVID infection my #anemia has leveled up to include low hematocrit and hemoglobin. I don't have gastro disease or heavy bleeding. I have a normal iron panel but low CD19 B cells. Bone marrow disease or malabsorption Anyone else with #longCOVID anemic"
X Link 2023-11-18T22:47Z [----] followers, 18.1K engagements
"My iron panel and most recent lymphocytes subsets (from May 2023). With iron supplementation and meat + greens in my daily diet I'm confused as to how my serum iron is improving while my stored iron (ferritin) is decreasing"
X Link 2023-11-18T22:56Z [----] followers, [----] engagements
"@DavidJoffe64 Anemia of inflammation I did have a positive speckled ANA test in October with symptoms like vasculitis. It's wild to have iron deficiency anemia because I have mild hemochromatosis. This is going against my genetics"
X Link 2023-11-18T23:29Z [----] followers, [---] engagements
"@LongCovidAidBot I caught COVID at a hospital in Sept. Now I have heart and vein damage autoimmunity. Medical expenses are high. I'm not able to work as much right now. All help needed and appreciated.π©΅ Paypal: Cash app: $AmyMitchellart GoFundMe:"
X Link 2023-11-25T21:52Z [----] followers, [---] engagements
"#COVID lymphocytopenia immune deficiency and dysfunction the evidence is everywhere. Get a full lymphocytes subsets [--] panel to check your B and T cell levels if you are getting sick often after COVID"
X Link 2023-11-25T22:40Z [----] followers, 12.5K engagements
"@EstherDavidson @D_Bone Eggs can have syrup only by accident. And sausage must be used to clean up the spill"
X Link 2023-11-27T07:49Z [----] followers, [--] engagements
"@D_Bone What is her name"
X Link 2023-11-27T22:39Z [----] followers, [---] engagements
"@lucyveepee CC Chronic COVID Are we allowed to say that now"
X Link 2023-11-28T00:08Z [----] followers, [--] engagements
"@chasexdrew23 CBC CMP Total IgG IgA IgM IgE IgG subclasses Lymphocytes subsets [--] CH50 C3 C4 ANA D-dimer For starters. These are basic. Some folks would recommend cytokine panels spike antigen (found in monocytes) or autoimmune testing. Neuro MCAS cardiology/dysautonomia evaluations"
X Link 2023-11-28T20:33Z [----] followers, [---] engagements
"@amethystarlight @PleaseSavemich I hate that IDF has stopped encouraging masking and COVID precautions except for vaccination. Most of us don't respond well to vaccines so it's the least effective suggestion. Even my immunologist is mocking his PI patients who mask. It's no wonder people have stopped"
X Link 2023-11-30T23:10Z [----] followers, [--] engagements
"@D_Bone I'm sure you now understand that you shouldn't put animals in the back of a pickup truck and that scared pets high on adrenaline can do amazing things. that said I'd probably ask the property owners if you can search for Bob. He was probably running scared"
X Link 2023-12-01T22:26Z [----] followers, [---] engagements
"@D_Bone I saw way too many unsecured pets dash across the street from the vet office into the woods and homes never to return. When they're running in a panic they don't pay attention to where they're going. The sooner you search for him the better. πΏ"
X Link 2023-12-01T22:36Z [----] followers, [--] engagements
"@D_Bone FIV is a possibility in a cat that has chronic diarrhea. Had a stray with chronic malabsorption from the condition. FIV cats should be kept separate from cats that are negative but can have normal lives. More likely Bob just has parasites from rough living. I hope you find him"
X Link 2023-12-01T23:24Z [----] followers, [---] engagements
"@JASanta @gardengirl778 @CDCDirector And if you ever find a web link or phone number to call for AZ's mythical early access program for Evusheld [--] let me know. It's buried in phone transfers and a poorly constructed website"
X Link 2023-12-02T22:35Z [----] followers, [--] engagements
"@JASanta @gardengirl778 @CDCDirector @timkaine The lack of support for mAbs funding from Rs is wild because R states had higher use of mAbs. Likely because the people were less likely to vax or mask. So their constituents would benefit from mAbs for acute and prophylactic COVID treatment"
X Link 2023-12-02T22:52Z [----] followers, [--] engagements
"@audisdead IMO if you get a decent discount on vet care for working at the veterinary office keep working there. I got care and pet meds nearly at cost for over [--] years. Best employee discount ever When I quit I had more pets than I could afford because it had been so cheap"
X Link 2023-12-03T02:11Z [----] followers, [--] engagements
"@unicornthorn I've told hospitals that I'm allergic to gadolinium used for MRI contrast. Don't use it or find an alternative. Then I get a call and they say "we'll give you gadolinium plus steroids" for your MRI. I have immune deficiency. No steroids Anyone know a gadolinium alternative"
X Link 2023-12-03T03:55Z [----] followers, [---] engagements
"@unicornthorn Yeah doctors will force a standard protocol even if the patient reacts badly. We'll just prevent anaphylaxis so it's not a problem. Would they force somebody with a food allergy to eat peanuts or wheat and give them benedryl + epinephrine They are insane"
X Link 2023-12-03T04:06Z [----] followers, [--] engagements
"SARS-COV2 infection within [--] seconds of face to face encounters. Like the anesthesiologist who made me take off my mask seconds after putting his on which the hospital states was too minimal to allow transmission. #COVID19"
X Link 2023-12-03T23:25Z [----] followers, [----] engagements
"I was exposed to a sick poorly masked person with a "bad cold" in a waiting room on Thursday and dodged another when my vascular NP cancelled today. Meanwhile some of my body fluids are still testing + from a COVID infection August 31st. Just assume everyone has #COVID"
X Link 2023-12-06T21:46Z [----] followers, 21.8K engagements
"@valdesignasid They're not very sensitive that's true. So when I see a positive result I believe there's antigen present. Especially when [--] different samples are positive"
X Link 2023-12-06T22:00Z [----] followers, [---] engagements
"Detecting Lyme and other tickborne infections isn't impossible even in immune compromised patients. Igenex offers PCR and microscopy. RED Labs in Belgium has a Lyme phage PCR. DNA Connexions has a Lyme + coinfections PCR panel. My infections were found by RED and DNA Connexions"
X Link 2023-12-10T22:29Z [----] followers, [---] engagements
"As for COVID/SARS-COV2 I never created enough IgM or IgG antibodies to test positive. My infections were detected by nasal throat and stool RAT + results. Spike S1 protein was detected in my monocytes by IncellDX's research"
X Link 2023-12-10T22:33Z [----] followers, [---] engagements
"@Sueb228 I had primary immune deficiency and a history of chronic Lyme EBV mold exposure and mycoplasma at the point I was exposed to SARS-COV2. Judging by my antibodies tests and long COVID my immune system saw the virus and just said "Nope. I'm done. Got enough already.""
X Link 2023-12-10T22:40Z [----] followers, [--] engagements
"@dreamsofskies @nursejenii Anyone with hypogammaglobulinemia (low IgA IgM or IgG) can test negative on those kinds of antibodies tests. Not because they don't have the infection but because their total antibodies don't meet the threshold for a positive range"
X Link 2023-12-11T08:05Z [----] followers, [--] engagements
"@JessicaLexicus #LCAIDS isn't quite the same as CD4 depletion seen in HIV AIDS. All types of T + B cells are affected. This type of immune deficiency is lymphocytopenia. My lymphocytes subsets [--] panels: Mar [----] compared to after COVID measured Dec [----]. May [----]. Nov [----] compared to Nov 2023"
X Link 2023-12-17T02:35Z [----] followers, [----] engagements
"@TsaiMeLemoni @talulahshARC It's the use of the word "long" that's a problem. Whatever is happening in these conditions "long" doesn't scientifically describe. By avoiding medical terminology and using a trendy word that downgrades severity any condition described as "long" can be minimized"
X Link 2023-12-18T07:47Z [----] followers, [--] engagements
"@dsethlewis PL ignored @LongCovidAP's letter for over a month only to copy the majority of demands and imitate the action. Don't forget to sign the letter if you haven't already. The more ways we can draw attention to our LC needs the better"
X Link 2023-12-19T00:55Z [----] followers, [----] engagements
"Oh and how could I forget to thank my health insurance They denied a heart CT and instead had me run on a treadmill in spite of elevated troponin levels since September. And they won't cover Paxlovid again until February so if I catch COVID it would be $1k/box thanks Pfizer"
X Link 2023-12-19T21:09Z [----] followers, [---] engagements
"@PopBase Only the animated Grinch movie is good so easily the live action version must go"
X Link 2023-12-25T21:06Z [--] followers, [--] engagements
"@amethystarlight Ask @JoshuaPribanic where the water is safe before you buy in PA"
X Link 2023-12-25T23:08Z [----] followers, [---] engagements
"@Stanzupforit In case NIH decides to remove guidelines for treating #COVID+ special populations including immune compromised I have printed this page for future reference. I also took screenshots. I recommend anyone who is immune compromised to do the same"
X Link 2023-12-29T23:16Z [----] followers, [----] engagements
"I had a cardiology appointment scheduled this week to discuss elevated troponin I levels since #COVID in September. I have experienced vascular issues some are ANA+ autoimmunity in flares. My cardiologist is refusing to see me due to my "recurrent coronavirus.""
X Link 2023-12-30T23:45Z [----] followers, 92.6K engagements
"@D_Bone @D_Bone wouldn't earlier waves of SARS-COV2 be more likely to cause long COVID simply because they're first infections Nothing to do with previous immunity from vax. Simply exposure to the virus"
X Link 2023-12-31T05:30Z [----] followers, [--] engagements
"@ibrake4ants @MauC39767 I did so much better with monoclonal antibodies. Regen-Cov during Delta in Sept [----]. Evusheld twice in [----] as prophylaxis greatly helped LC symptoms and improved lymphocytes subsets. Low T and B cells normalized"
X Link 2024-01-01T01:57Z [----] followers, [--] engagements
"@ClausErnst @froglet80 @waysidewhelp @taylorpartdeux @TristanVeness @lechatbaron It's NYE there's some drinking involved in the comments section"
X Link 2024-01-01T04:56Z [--] followers, [--] engagements
"@BeauxReliosis My IgG levels were considered low by some labs when they were lower than [---]. I think my lowest total was [---] before receiving infusions. Immune response infection frequency and subclasses matter for borderline primary immune deficiency cases"
X Link 2024-01-01T22:47Z [----] followers, [--] engagements
"@LauraMiers @organicbotanic It's more frightening when you learn that the Immune Deficiency Foundation abandoned COVID precautions including masking. People with PI often don't make antibodies to vaccines and there are no mAbs but IDF changed to a vax mAbs and relax approach"
X Link 2024-01-01T23:08Z [--] followers, [----] engagements
"@LauraMiers @organicbotanic I think they received a lot of negative feedback for that clip. People with PI were a lot safer once COVID antibodies were in our IG infusions and mAbs were available. But I haven't heard any advice of returning to caution from IDF since Evusheld was lost in Jan 2023"
X Link 2024-01-01T23:17Z [----] followers, [---] engagements
"@froglet80 Markers are a bad idea. Paint and glue are even worse. Even getting a N95 mask wet damages the static protection. -an artist who really wanted to paint her masks"
X Link 2024-01-05T09:12Z [----] followers, [--] engagements
"@dlingenfelter SARS-COV2 doesn't just infect and destroy CD4 T cells like HIV. It takes out all types of T and B cell lymphocytes causing immune deficiency. Here are my lymphocytes subsets before and after COVID:"
X Link 2024-01-07T01:58Z [----] followers, 41.7K engagements
"@dlingenfelter I've been trying to raise awareness that SARS-COV2 causes more rapid destruction to the immune system than HIV. AIDS is the worst thing people can imagine but COVID appears to have worse potential. It's only just begun to tear us down"
X Link 2024-01-07T02:05Z [--] followers, [----] engagements
"@CGIface @dlingenfelter I haven't been vaccinated for COVID. But thanks for the prayer"
X Link 2024-01-07T04:33Z [--] followers, [--] engagements
"@emahlee I have primary immune deficiency CVID and now acquired immune deficiency from COVID. I have low immuneglobulin (IgA and IgG antibodies) and low B and T cells. I don't make or retain enough antibodies in response to infections or vaccines. I receive antibodies from IG infusions"
X Link 2024-01-07T09:50Z [----] followers, [--] engagements
"@emahlee [--] times when I've had COVID IgG antibodies were measured a month afterwards. I didn't test positive. During acute COVID in [----] I tested IgM negative. I simply don't respond to this virus. I also have autoimmunity triggered by COVID. Vaccination might trigger a flare"
X Link 2024-01-07T09:53Z [----] followers, [--] engagements
"@crwequine @dlingenfelter I do have primary immune deficiency: CVID and APS1. That 3/19 lymphocytes subsets panel was done as part of defining features of my PID. T and B cell levels were normal. My PID had hypogammaglobulinemia (low IgA and IgG) and specific antibody deficiency memory phenotype"
X Link 2024-01-07T20:40Z [----] followers, [---] engagements
"@bigolpoofter @dlingenfelter Some major differences between when you caught COVID and when I did: you were on antivirals for HIV. @dbdugger has been posting about how helpful many HIV antivirals are against SARS-COV2. I started Truvada as PreP in July [----] and also in hopes it would help me with COVID"
X Link 2024-01-07T21:01Z [--] followers, [---] engagements
"@sun_in_winter12 I've already got a group named TLC NOW: Treat Long COVID Network of Warriors. Though I approve of what you're doing that name has been taken"
X Link 2024-01-08T04:20Z [----] followers, [---] engagements
"@sun_in_winter12 Image logo for TLC NOW with date and time stamp. Twitter handle is also claimed with Treat Long COVID Network of Warriors written in full. I have a FB messenger group as well"
X Link 2024-01-08T04:42Z [----] followers, [--] engagements
"@D_Bone Dave Alba Josh Louie"
X Link 2024-01-09T22:59Z [--] followers, [---] engagements
"@D_Bone Pike Dr Alice Puppy Grandma"
X Link 2024-01-09T22:59Z [--] followers, [--] engagements
"@D_Bone Dara RP Winnie Calbear"
X Link 2024-01-09T23:00Z [----] followers, [--] engagements
"Showing off the work @D_Bone is doing with his AI illustrations from LC Land. I'm supposed to pick [--] and they're all great. ATON Communications specialist on patrol for treatment supplies interception. Protected by MCAT (MonoClonal Anti-Tiger) outside the bubble. #NewProfilePic"
X Link 2024-01-11T01:15Z [----] followers, [----] engagements
"@corpsereanimate @D_Bone Inspired by the real purple moto jacket"
X Link 2024-01-11T04:01Z [----] followers, [--] engagements
"@corpsereanimate @D_Bone And the real "Panther Paws" Luna"
X Link 2024-01-11T05:36Z [----] followers, [--] engagements
"@CovidSolidarit1 We aren't going to get all of those things even if we strive for them but there is no reason not to want justice and to desire for wrongs to be made right"
X Link 2024-01-12T23:52Z [----] followers, [--] engagements
"What would you put on a tshirt or sticker to raise #longCOVID awareness or activism I'm brainstorming ideas for @LongCovidAP but I have writer's block. #ACTUP did amazing work; everything I think of is the same or too similar. Inspired by ACTUP is fine but not an exact copy"
X Link 2024-01-14T23:47Z [----] followers, [----] engagements
"Despite what assistant Ken Reidy says Baldwin's office website says she wants to hear from you. Reidy doesn't like getting emails so perhaps you should contact the old-fashioned way with a beautiful sparkling letter. Office addresses here: #ButMyInbox Hear this recording & act. LCAP emails from pwLC will stop when the #CureLongCovid [--] demands are in legislation when @JoeBiden Declares LC a National Emergency π¨ when LCAP can testify 2HELP when children receive LCantivirals @kbr227 #NoCureNoPeace https://t.co/yeuQTaq1kg https://t.co/LwmO64PQtD Hear this recording & act. LCAP emails from pwLC"
X Link 2024-01-16T15:09Z [----] followers, [----] engagements
"There's a lot of bad information out there about how COVID damages the immune system. Jha This is what COVID did to my T and B cells. It's called lymphocytopenia a form of immune deficiency. COVID causes immune deficiency and dysfunction according to:"
X Link 2024-01-17T01:33Z [--] followers, [----] engagements
"#ButMyInbox Send another letter and dedicate it to Ken Reidy. π"
X Link 2024-01-17T21:14Z [----] followers, [---] engagements
"@Ryan_Ken_Acts @SarahLerner Bite to Work Program π€£"
X Link 2024-01-17T22:34Z [----] followers, [--] engagements
"@LongCovidAP @LongCovidAP performs first direct action at Senate HELP hearing on #LongCovid today. Declare long COVID a national emergency. #DemandHELP Photo Credit @PublicHerald"
X Link 2024-01-18T16:57Z [--] followers, [----] engagements
"@kennaonearth Yes my B and T cell counts on my [----] lymphocytes subsets panel were perfectly healthy. Quality and function tests of T and B cells were also normal. These were done to establish the parameters of my primary immune deficiency"
X Link 2024-01-18T20:22Z [----] followers, [--] engagements
"@kennaonearth My CVID is defined by hypogammaglobulinemia (low IgA and IgG) and specific antibody deficiency memory phenotype (memory B cells have an unusually short lifespan). Evaluated during 2017-19. T and B cell deficiency came as a result of COVID first detected December 2020"
X Link 2024-01-18T20:25Z [----] followers, [--] engagements
"@D_Bone If he could start aspirin and some form of anticoagulant enzyme (nattokinase or lumbrokinase) it could help with hypercoagulability and vascular inflammation. I had facial numbness during COVID. Part of the neuropathy was vasculitis/clotting blocking blood to facial nerves"
X Link 2024-01-18T21:45Z [----] followers, [---] engagements
"NBC coverage of the Senate HELP hearing with @LongCovidAP's action as the lead image and video. β #DemandHELP"
X Link 2024-01-19T19:10Z [----] followers, [----] engagements
"@froglet80 My long COVID is worsening [--] months out from recent infection. Exhausted by anemia heart/vein damage insomnia endocrine issues and repeat rounds of shingles. Unable to work as much and my insurance deductible has reset with the new year. I caught my 6th COVID infection on Aug 31st at a hospital. I had to unmask for a medical procedure. I tested positive for an entire month. My ability to work has been greatly reduced since then. My heart was damaged. β€π©Ή Help needed and appreciated. https://t.co/0RlbfJ5c8y I caught my 6th COVID infection on Aug 31st at a hospital. I had to unmask"
X Link 2024-01-19T20:23Z [----] followers, [---] engagements
"@audisdead Usually I can tell by their physical look followed by their breath. Usually the appointment is scheduled for frequent urination and weight loss but maybe loss of appetite if it's the end"
X Link 2024-01-20T07:27Z [----] followers, [--] engagements
"I have been shouting that COVID causes immune deficiency a lymphocytopenia like AIDS ever since [----]. @LongCovidAP speaks for me but they were not allowed to speak at the HELP hearing on #LongCovid. Patients are developing AIDS-like immunodeficiency and succumbing to opportunistic infections and cancer. But these stories are not being told. The situation is urgent. We have no treatments and no seat at the table to shift the focus to one that will save lives. Patients are developing AIDS-like immunodeficiency and succumbing to opportunistic infections and cancer. But these stories are not"
X Link 2024-01-20T21:15Z [--] followers, [----] engagements
"@froglet80 That movie not real life π"
X Link 2024-01-21T04:06Z [----] followers, [--] engagements
".to learn she had had experience with vaccine-induced illness and at least [--] round of serious COVID herself. She had witnessed COVID causing psychosis and cognitive impairment. She did not play it down. Never once said minimizing "brain fog." She did not criticize my masking"
X Link 2024-01-22T21:34Z [----] followers, [---] engagements
".or suggest I force myself back into public situations. She never suggested I exercise more. We did discuss sleep issues. Increasing my hydroxyzine for sleep was the only medication suggestion. She seemed to understand my high-risk immune status and asked for names of specific"
X Link 2024-01-22T21:34Z [----] followers, [---] engagements
"If viral persistence is driving any of those conditions caused by COVID those are not a "political identity." They are symptoms of an infection. It's important to know the cause to treat the disease. #LongCOVID is my infection identity. My hot take is: #LongCovid is a political identity not a disease in of itself If covid triggered it that's LC You got COVID and then you got: Chronic migraines LC Asthma LC Post exertion malaise LC Stroke LC MCAS LC POTS LC Heart attack Allergies LC My hot take is: #LongCovid is a political identity not a disease in of itself If covid triggered it that's LC"
X Link 2024-01-26T22:40Z [----] followers, [----] engagements
"@lisa_iannattone Noah Kahan "Stick Season" and now he's out touring. Love his lyrics. I hope his career isn't ruined by COVID"
X Link 2024-01-27T09:49Z [----] followers, [---] engagements
"@ravenscimaven The pandemic has made dating easy. I don't. I mean I would if I could find someone that protected themselves therefore protecting me. A maskless face tells me all I need to know"
X Link 2024-02-01T17:26Z [----] followers, [--] engagements
"@Kenneth33071904 It was me. I got COVID in September and well look at the graph. π€£ Treat Long COVID. I was a suspect in the Ohio cryptic lineage case for a reason"
X Link 2024-02-05T23:48Z [----] followers, [--] engagements
"@amethystarlight @IDFCommunity @Primary_Immune @ImmunoUK @ImmunoFever I already have LC and I assume that it's chronic. A safe haven only works for NOVIDs. I probably could have periods where I'm contagious to others. We need better treatments for acute and long COVID. But I support and understand your idea for a community"
X Link 2024-02-08T21:35Z [----] followers, [--] engagements
"@tingkun55 @LauraMiers I think Marianne Williamson has mentioned LC. RFK may have mentioned vaccine injury as well. But neither of these candidates has my endorsement for other reasons unfortunately"
X Link 2024-02-09T00:39Z [----] followers, [--] engagements
"πAfter I researched my results advocated for myself repeatedly and explained the significance of elevated troponin to my cardiologist who didn't understand π« labsπ€¦πΌβ: finally victory Insurance approved heart CT scan to check for myocarditis from COVID. Scheduled next week. Meanwhile also in Ohio my heart muscle has been leaking from damage from COVID for [---] months. Insurance won't cover advanced imaging. I have to wait [--] months to get a 2nd cardiology opinion. Echo EKG event monitor and stress test were ok but a leaking heart is not ok. https://t.co/ie6FphIFuE Meanwhile also in Ohio my"
X Link 2024-02-10T04:32Z [----] followers, [----] engagements
"@internetuserf12 If bone marrow is infected that pretty much means long COVID is a permanent chronic infection. Bone marrow transplant is dangerous and intense procedure. Where could one find an uninfected donor There are no latency reversal agents for HIV even after [--] years. Not optimistic"
X Link 2024-02-11T23:12Z [----] followers, [----] engagements
"I've suspected a bone marrow infection in my #longCOVID case for years. When my CD19 B cells were hit the hardest and depleted on my lymphocytes subsets panel and as I've become more anemic (low RBC HGB HCT ferritin) the clues pointed to bone marrow dysfunction. π¨π¨π¨This paper explicitly suggests that viral reservoirs in bone marrow must be to blame for mitochondrial dysfunction in lymphocytes monocytes NK cells dendritic cells. This would be why the complement system is wacked. This is a big deal.π¨π¨π¨ https://t.co/VhX5sDMvpg π¨π¨π¨This paper explicitly suggests that viral reservoirs in"
X Link 2024-02-11T23:16Z [----] followers, [----] engagements
"My Sept #COVID infection was the result of lack of masking at a hospital after I requested protection due to my immune deficiency disability. I've experienced many more refusals. Just today a nurse at a rheum office "accommodated" my request to mask by wearing it on her chin. Hospitals Deny Immunocompromised Patients #ADA Requests For Masks via @forbes https://t.co/ljSPxTX3I9 #immunosuppression #masks #ethics @MassGenBrigham @UCSFHospitals Thx to @juliairzyk @DorfmanDoron @pjavidan @SFdirewolf @sdaction1 @mattbc Hospitals Deny Immunocompromised Patients #ADA Requests For Masks via @forbes"
X Link 2024-02-14T09:31Z [----] followers, [----] engagements
"When I requested accommodations for my endoscopy procedure for which I had to unmask I asked for staff to wear N95s to prep and recover in a private area and to be allowed to wear my mask at all times except during the procedure. Denied. Similar to requests denied by UCSF"
X Link 2024-02-14T09:55Z [----] followers, [---] engagements
"Even accommodations agreed to by compromise were not followed. Staff were to wear surgical masks but the anesthesiologist arrived unmasked. I was made to unmask to have my mouth examined. My N95's seal was broken in the shared prep and recovery areas by oxygen tubes underneath"
X Link 2024-02-14T09:58Z [----] followers, [---] engagements
"@M8Void 3M has links to buy masks on their website. They won't verify purchases from Amazon unfortunately. But they did verify that the case of Aura 9205+ I purchased from Home Depot were the real thing"
X Link 2024-02-16T23:33Z [----] followers, [---] engagements
"I thought my lymphocytes (T and B cells) were on the mend [---] months after acute COVID but they were just riding the LC Rollercoaster. π’ Back down I go"
X Link 2024-02-16T23:51Z [----] followers, [----] engagements
"To anyone wondering why #Truvada the TDF version with worse potential side effects is being trialed for #longCOVID instead of another form of the drug it's because TDF has more potential to treat COVID than the TAF form"
X Link 2024-02-24T07:10Z [----] followers, [---] engagements
"@plagueprose I use "at the beginning of the pandemic" to refer to that time. Whereas now we're in the later denial period or "after the government ended the COVID emergency.""
X Link 2024-02-25T21:48Z [----] followers, [---] engagements
"@TristanVeness Cats don't have access to GS-441524 either. Gilead has the cure for FIP but won't release an older drug with a shorter profit patent life. Thanks @GileadSciences for letting cats die"
X Link 2024-02-26T19:43Z [----] followers, [---] engagements
"@AnciraBecky Many hospitals allow negotiation of bills assistance programs and reduction or elimination of balances based on the patient's income. The billing department should be able to guide you to applications for these programs. The paperwork stinks but this has worked in my favor"
X Link 2024-02-29T04:01Z [----] followers, [---] engagements
"The metal-free N95 model that I'd used for [--] previous MRIs failed during today's procedure. Perhaps it was the extended wear time of 90+ min or changing temperatures (outdoors indoors cool MRI tube) but the mask had severe condensation inside by the time the procedure began"
X Link 2024-02-29T04:45Z [----] followers, [---] engagements
"I definitely have claustrophobia but the wet interior of the mask in the tight low air space was suffocating. Moisture was dripping back onto my face. As determined as I was to protect myself I couldn't take it. I had to exit the tube and remove my mask to complete the MRI"
X Link 2024-02-29T04:45Z [----] followers, [--] engagements
"The imaging technicians that had been masked greeted me maskless when I exited the machine though I convinced them to put them back on at the end of the procedure. This was far more risk than I'd anticipated. The strongest wills and best equipment can fail; that happened today"
X Link 2024-02-29T04:45Z [----] followers, [--] engagements
"I can't undo what happened. My only alternative was to cancel the procedure and try again another day with a different mask. But I've been living with ongoing heart damage since September. It took serious determination for me to complete that intense procedure as it was"
X Link 2024-02-29T04:45Z [----] followers, [---] engagements
"If anyone has suggestions for a valved metal free mask that can be used in MRI machines I am interested. As for the consequences of breathing hospital air I'll have to wait and see. Thanks everyone for the support and advice on gadolinium allergy prep- that part went well"
X Link 2024-02-29T04:45Z [----] followers, [---] engagements
"@AnneMarieFlynn2 I wished the staff around me had stayed masked while I was unmasked in the MRI. But when I had to come out of the tube they had unmasked"
X Link 2024-02-29T23:40Z [----] followers, [--] engagements
"#CDCkills π The new CDC guidelines are standards for never-ending sickness death and disability. Voice your outrage: send CDC a message here: I am devastatedI saw with my eyes whats coming from CDC tomorrow. My sources told me on what their rationale is based. And based on what I know (epidemiologist for [--] years)it is complete bullshit crafted on thin flimsy data. I cant believe CDC has such incompetent leaders.π§΅ https://t.co/7qlxxdHwdj I am devastatedI saw with my eyes whats coming from CDC tomorrow. My sources told me on what their rationale is based. And based on what I know"
X Link 2024-03-01T09:08Z [----] followers, [----] engagements
""Top of mind" means "first to die" under new CDC COVID guidelines. Thanks for thinking of the vulnerable Mandy. We sure do appreciate being a priority. πͺ¦ #CDCkills "'So the folks who are more vulnerable were top of mind when we did this' CDC Director Dr. Mandy Cohen told CBS News." π https://t.co/djXa9jYepn https://t.co/ZuY8QM1NW7 "'So the folks who are more vulnerable were top of mind when we did this' CDC Director Dr. Mandy Cohen told CBS News." π https://t.co/djXa9jYepn https://t.co/ZuY8QM1NW7"
X Link 2024-03-01T22:42Z [----] followers, [---] engagements
"@AnciraBecky Thank you βΊ I hope that by sharing my story it helps all of us"
X Link 2024-03-04T00:50Z [----] followers, [--] engagements
"@MahlerAdam @LCawarenessInt @LCDCmarch15 That's because there are no image filters"
X Link 2024-03-04T00:53Z [----] followers, [--] engagements
"@AnciraBecky Guinea pigs have a lot to say"
X Link 2024-03-04T01:36Z [----] followers, [--] engagements
"I've experienced T and B cell deficiency since my COVID infection in [----]. In the past year I've developed anemia with low red blood cells hematocrit hemoglobin and ferritin. These are exactly the #LongCovid symptoms that would be expected with a bone marrow infection. Very interesting poster from @UCSF & @uhmanoa on #LongCovid: SARS-CoV-2 infects hematopoietic stem cells which is proposed as the root cause of Long COVID. https://t.co/VGGGArc7xs https://t.co/GGQ3lhQAW3 Very interesting poster from @UCSF & @uhmanoa on #LongCovid: SARS-CoV-2 infects hematopoietic stem cells which is proposed as"
X Link 2024-03-08T23:47Z [----] followers, [----] engagements
"@CovidComunidad @zalaly @denise_dewald @D_Bone @LauraMiers @Vickyvdtogt @Amal4Solutions @MVGutierrezMD @chydorina @healingfromlc @microbeminded2 @drseanmullen @I_need_a_razor @rubyslippahs @guty2370 @G_Commish I've been helped by immuneglobulin monoclonal antibodies (not currently available) maraviroc truvada Tollovid/gromwell root. Paxlovid only reduced positivity (antigen/viral load) in acute phase for me. Antihistamines beta blockers hydroxychloroquine for autoimmunity etc"
X Link 2024-03-11T03:58Z [----] followers, [---] engagements
"@CovidComunidad @zalaly @denise_dewald @D_Bone @LauraMiers @Vickyvdtogt @Amal4Solutions @MVGutierrezMD @chydorina @healingfromlc @microbeminded2 @drseanmullen @I_need_a_razor @rubyslippahs @guty2370 @G_Commish I've never tried metformin Remdesivir or statins though some have been helped. I'm on many supplements though it's hard to say whether any are helping with viral persistence; mostly they target inflammation allergies and nutrient deficiencies"
X Link 2024-03-11T03:59Z [----] followers, [--] engagements
"@CovidComunidad @zhang_yueting @zalaly @denise_dewald @D_Bone @LauraMiers @Vickyvdtogt @Amal4Solutions @MVGutierrezMD @chydorina @healingfromlc @microbeminded2 @drseanmullen @I_need_a_razor @rubyslippahs @guty2370 @G_Commish I'm on doxycycline. It's prescribed for Lyme and acne. Hard to know if it helps me with long COVID since I've been on it almost continuously since 2016"
X Link 2024-03-11T04:03Z [----] followers, [--] engagements
"@CovidSolidarit1 I can cross my fingers like Louis. But Charlotte's dress (left waist) heal with a section of the pavement and sleeve disappearing over her hand are sloppy photoshop edits"
X Link 2024-03-11T04:07Z [----] followers, [---] engagements
"As people with #longCOVID & our allies begin travel to @LCDCMarch15 #LongCovidAwarenessDay I want to encourage participants with my LC story: Infection & Activism. Though we're suffering and our numbers growing coming together is a great accomplishment"
X Link 2024-03-11T05:12Z [----] followers, [----] engagements
"We have come a long way in [--] years from FB support groups and Twitter hashtags naming and defining our illness creating awareness campaigns online and in the media to actions and events that gain international attention. We have much further to go for LC tests and treatments"
X Link 2024-03-11T05:12Z [----] followers, [--] engagements
"@zhang_yueting Even the illustrator is in on the spouse abuse: picturing the protections and thus the spouse as a burden. What a terrible article Shame on @NPR for publishing this"
X Link 2024-03-12T01:06Z [----] followers, [--] engagements
"@CovidSolidarit1 Real faces caught on honest film with no digital photo algorithm cleanup or photoshop editing. I miss honest photography. Even my phone camera edits out blemishes and wrinkles"
X Link 2024-03-12T01:15Z [----] followers, [--] engagements
"Lucky COVID number [--] Wednesday's immunology & dysautonomia appointments gave a parting gift. Woke up with a sore throat today though I've felt off since Thurs. Was it my dad who drove me who tested negative & wore N95 the whole time Or unmasked HCW/patients at [--] hospitals"
X Link 2024-03-12T20:38Z [----] followers, 30.5K engagements
"I'm fighting infection number [--] as of today. Caught COVID at healthcare appointments last week. All patients and healthcare staff were unmasked. I've had to cancel in-person work purchase tests and I may have to buy more Paxlovid if I rebound. Help needed. Again. π I caught my 6th COVID infection on Aug 31st at a hospital. I had to unmask for a medical procedure. I tested positive for an entire month. My ability to work has been greatly reduced since then. My heart was damaged. β€π©Ή Help needed and appreciated. https://t.co/0RlbfJ5c8y I caught my 6th COVID infection on Aug 31st at a hospital."
X Link 2024-03-12T21:44Z [----] followers, 34.4K engagements
"I applied for @pfizer's #Paxlovid #paxcess discount card. It can be used every [--] days. But because I have insurance and insurance won't cover more than [--] box every [--] months the discount doesn't work. I was offered the possibility of cash pay: Paxlovid is $1600/box. I have a box of Paxlovid. My insurance will only cover [--] box every [--] months. Pax costs $1600/box. I needed [--] boxes in September. Immune compromised patients need better treatments available like mAbs and better access to antivirals. New antivirals for acute and LC are needed. I have a box of Paxlovid. My insurance will only cover"
X Link 2024-03-13T20:09Z [----] followers, [---] engagements
"@atranscendedman Nah. Increasing Pfizer's profits. The government purchased boxes which we the people paid for will now be wasted. These could have been given free or cheap (I bought one for $20 in Sept). New approved Pfizer Paxlovid is $1600/box"
X Link 2024-03-14T04:37Z [----] followers, [--] engagements
"@kfgibson I know And now Pfizer will profit off it twice They sold it to the government threw it out (possible tax credit here for some entity) so now people or insurance have to pay full price for the same drug"
X Link 2024-03-14T05:12Z [----] followers, [---] engagements
"@LauraMiers @dbdugger @CovidComunidad @MBVanElzakker @calirunnerdoc @drlangosta @healingfromlc @NeurologistMom @WesElyMD @angryhacademic @NeuroImmuneGuy @microbeminded2 @DYork1979 @chydorina @MVGutierrezMD @DaniBeckman Ritonavir has been out for a very long time as a HIV antiviral"
X Link 2024-03-16T22:15Z [----] followers, [---] engagements
"COVID Lyme babesia bartonella chickenpox strep: common chronic infections can trigger autoimmune neurological issues in kids and adults. When onset is in childhood the conditions are called #PANS or #PANDAS. Treatment of the infections is key. (Full interview in thread ) π£ THE KIDS ARE NOT ALRIGHT OCD/ ANXIETY/ DEPRESSION/ TICS/ RAGE/ PANS/ PANDAS/ cant function at school anymore My latest is w neurologist Dr. Elena Frid top expert on infections that cause neuro-psych disorders. Few have expertise while π explodes w kids who need help https://t.co/TxENXxJeMe π£ THE KIDS ARE NOT ALRIGHT OCD/"
X Link 2024-03-20T09:12Z [----] followers, [---] engagements
"I called Pfizer's Paxcess helpline number. Confirmed insurance would need to approve for copay card to work. All insurance needed to do was approve and pay anything: $1. Pfizer would pay the rest. Insurance said no and demanded prior auth which will cost far more than $1 in time"
X Link 2024-03-22T09:50Z [----] followers, [----] engagements
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