Diane Ducret

@gymrat_bookworm 💪

1. I wrote many college papers on PANS/PANDAS *20 years ago* and people still don't believe that infections can trigger complex neuropsychiatric conditions resistant to traditional psychotropic medications. 2. I believe that many people suffering from acute/chronic/long/post infectious-states are suffering from PANS/PANDAS-like pathology at any age and could benefit from IVIG if they had access to affordable treatment. 3. CT has now passed a bill granting access to PANS/PANDAS treatment. Immune issues require immune treatment. Signed, A woman finally on a path to healing on monoclonal antibodies and antibiotics after fighting extremely hard to gain access to them

@LarryWeis7 @gymrat_bookworm Hi, PANS PANDA /LC/SFN/ME CFS here too, let s connect :)

I saw a Dr in the DC area last year who said I absolutely would have qualified for a diagnosis of PANS/PANDAS if I were a child, based on the neuro-inflammatory markers & antibodies he said were showing up in my blood. He said I should consider IVIG, but it’s super expensive & insurance companies won’t cover it unless you meet the strict diagnostic criteria. I’m seeing a Dr in NYC right now & he is very good & we are going to try an anti-viral 1st which has helped some before. If that doesn’t work we may look at the IVIG as an option. I’m waiting to see if this treatment being done in Japan for post vax injuries will also help people with Infection Associated Chronic Illneses.

Spain Biobizkaia Health Research Institute 191 participants study finds immune autoantibodies may shape long COVID and chronic fatigue symptoms linking them to autonomic dysfunction and even memory changes. nature.com/articles/s4159…

@32Sfc46582 I have the exact same nail phenomenom

Hello friends, here's a picture of my hand, fascinating, isn't it? But I mainly wanted to know what these red lines at the tips of my nails mean. Chagpt mentioned Terry's nails. I don't have any heart problems (at least I don't think so, I had a lot of tests in 2023 and 2024 when I was unknowingly low-risk)... I also no longer have lunulae except on my thumb. Similarly, I seem to have no collagen left on my fingers (under my nails) and I only have skin on the backs of my hands. I don't remember what it was like before I got sick. I didn't pay much attention to my body, but now that I've been bedridden for 15 months, I have the time. Thank you for your feedback.

@Gmwetz Yes it is ++++

I see more and more pictures of these blood smear tests from posted from a veterinarian (Walter Tarello) in Dubai that shows babesia and Bartonella in blood samples from people around the worlds. Is this legit ?

@internetuserf12 Immunotherapy such as... immunoglobulins ?

Periodic reminder: If SARS-CoV-2 persistence is driven at least in part by residual antigens rather than active replication, immunotherapy may be more effective than antivirals or monoclonals.

@CarmenSD2023 @gymrat_bookworm Agreed

EDS in some cases I believe is taking place due ME/CFS itself. With disregulated cortisol and other issues, tissue maintenance gets messed up and overtime EDS symptoms. Show I think in May cases fix the ME/CFS which is seemingly an extremely difficult puzzle and the EDS symptoms may resolve. Genetic EDS is different though

If you have a long covid or ME/CFS dx, you NEED to be screened for hypermobility, and if you have hypermobility, you NEED to have advanced imaging of the brain, spine, and blood vessels head-to-toe, because I bet most of us qualify for 1-5 interventional radiology and/or surgical procedures and that's why we are laid up in bed. I've only had the bottom HALF of my blood vessels properly screened and I'm already eligible for one interventional radiology procedure. I'm just really learning about spiky-leaky now. It's gonna piss off so many of you, because I think it's going to resonate with so many of you.

@32Sfc46582 J ai 2 retours de severe qui ont commencé. Je t ai PM

Hey everyone, I've been severely ill for a year and my condition has worsened considerably (LDA withdrawal, stellate ganglion block, spleen...), in short, I'm desperate. I finally agreed to IVIG (mandatory hospital session at the beginning in France) without having the GCPR tests done, etc. My first session is in two weeks. I can still cancel. Two problems: - The journey, 120 minutes each way. Ambulance is fine, lying down, but you know that when you're severely ill, I don't know why, even lying down, etc., you still get PEM... - My body can't tolerate anything. It won't tolerate IVIG at the beginning, that's for sure. I can still talk, get up to go to the bathroom, and use my phone. I could lose everything... Are there any other MECFS/LC patients with PEM in my situationc? I struggle every second but I really want to try, but last time (stellar ganglion) it was a disaster...

@not_thekase @VPAV8 Are you doing it in US or Spain ?

@CovidSolidarit1 i’m in a drug study for Baricitinib (REVERSE LC- clinical research trial) and it helps with this! it’s been life changing to not have my immune system at its own throat constantly. the study is still open for enrollment i believe!

Why is there zero medication I can take to lower my brain inflammation when it flares?

@CoyoteSanctuary @mycityapartment @HouseLyndseyRN @VUsuxballs @CharlesRixey @KevinMcCairnPhD I did try that adress ...

@dianeducret @mycityapartment @HouseLyndseyRN @VUsuxballs @CharlesRixey @KevinMcCairnPhD There's been a lot of communication interference I'd go direct at this point x.com/i/status/20382…

Leaving Tokyo tomorrow and excited to be amyloid free. Still work to do, but sgf will finish the job. The scariest thing is returning to a broken US medical system after being spoiled by doctors here who care. Huge thanks to @CharlesRixey and @KevinMcCairnPhD

@exosome @CFSCentral I m def in !

@CFSCentral let’s discuss please text me 858 353 4303

Robert Benson emailed me about his dramatic improvement w Dr. Kevin McCairn's therapy that combines dual filtration plasma apheresis (DFPP) to filter the blood w stem cell–derived growth factors. Robert wrote: "I associate [my illness] with the [Covid] vaccine; my doctor agreed. I had 3 Pfizer shots. Two in May of 2021 & a booster in Dec 2021, which is when my problems started. Two days after my honeymoon. "I also had Covid 3 times, but never had a positive test. Last summer, high-dosage ivermectin relieved my symptoms but now [it] does not work at all." Through the course of his illness, he's been bedridden at times, often, he says, "going as long as 6 weeks w/out going outside." Robert's other symptoms: "Severe anxiety, vertigo, shortness of breath, exercise intolerance. Unable to answer phone or text, email, pay bills, balance issues, so much more. "Since procedure day 1, all symptoms are relieved, but I am not 100%. Just thrilled to be able to get out of bed and go about my life. I have 2-3 weeks left of therapy. "I can tell my brain is not 100%; the docs are clear I may have a new baseline. Things should continue to improve as more clots are removed." Robert's experience w the procedure itself, which is known as the Dracula procedure because blood is filtered via the jugular vein: "I have 4 weeks of treatments scheduled. I complete[d] week one. The week started with what I call the Keith Richards therapy. DFPP, where they insert into my jugular vein and filter my blood and send it back in once clean. "Slight pain on insertion. Uncomfortable for the 3-hour treatment in hospital." While the thought of the treatment was "horrifying," the reality, he says, "was really not too bad." The 5 other days he gets stem-cell growth factors via IV in the arm: "One hour at the clinic. Painless," he says. "The stem-cell growth factors aren't stem cells. They are derived from babies' teeth, unique to this hospital in Japan, I believe." With Dr. McCairn's treatment, stem-cell growth factors are likely designed to encourage stem cells to repair damaged tissues. Robert felt so good after his first treatment that he went on a 6-mile run, which he realizes now was too much, too soon. "Running was stupid," he puts it bluntly. "I loved it, but it triggered some issues that went away the next day. Walking miles every day not bad. I got my life back. I want to do things, enjoy life." But sometimes, you just need to feel like yourself, the way you used to feel. When Robert got sick w long vax, he was 55 and, he says, "in the best shape of my life." He was two years out from corporate world, working as a fishing guide. His own slice of heaven. Benson says he's lost many friends & even family due to his illness. Unfortunately, when we lose our health, many of us lose a lot more than just our health. Dr. Kevin's McCairn's treatment is in Japan. Robert is patient #14. PART 2 with Robert, soon to follow. In the meantime, some things to ponder. Could Dr. McCairn's treatment be used with other diseases, including ME (ME/CFS)? Could Dr. McCairn's be used in conjunction with Dr. Patrick Soon-Shiong's antiviral and cancer drug Anktiva to treat long Covid, long vax & ME? As a 1-2 punch? @KevinMcCairnPhD @HouseLyndseyRN @robert65968 @chrisca70578779 @AliceOutThere @julie_bush @bullishbruk @KennyCarmody @IrishMECFS @mike98572986 @useless_priest @mhornig #longcovid #Covidvaccine

@CFSCentral @mycityapartment @exosome Perfect

@dianeducret @mycityapartment @exosome I'll DM you my email address where you can write.

@mycityapartment @CFSCentral @exosome Trying to DM too but DM don't seem to work :) i did plasmapheresis too, eager to chat

@CFSCentral @exosome Hi my DMs don't work for some reason but if you're able to reach out through any of the other people in Japan they all have my contact and I'd love to share my story.

@CFSCentral @mycityapartment @exosome Trying to reach out to you as I have same experience but DM don t seem to work...

Keep me posted on your progress. Reason is telling me this could be an excellent combination, the 1-2 punch of Dr. McCairn's treatment plus Anktiva that's been missing. Jalbs, if you have time, would you PM me what you have/had (LC and/or long vax), your symptoms before treatment & what your symptoms are now. If you want, I can post on your experience as well. If not, I will not post on it. Mindy

@mycityapartment @HouseLyndseyRN @VUsuxballs @CharlesRixey @KevinMcCairnPhD I tried to contact them cause I d like to go, but got no answer... You know who should I reach ? 🥹🤞🏻

@HouseLyndseyRN @VUsuxballs @CharlesRixey @KevinMcCairnPhD Thanks so much! You're next! Looking forward to seeing your progress. Show those amyloids who's boss 🤣

@HouseLyndseyRN @mycityapartment @VUsuxballs @CharlesRixey @KevinMcCairnPhD I tried to contact them cause I d like to go, but got no answer... You know who should I reach ? 🥹🤞🏻

@mycityapartment @VUsuxballs @CharlesRixey @KevinMcCairnPhD yayyyyyy so happy for you !!!!!

@pausedME Yes ! I have strong excitotoxicity too and high levels of glutamate blood+ urine.

A new #MECFS neuroimaging study reports white matter changes consistent with neuroinflammation, edema, cellular infiltration, and axonal reorganization. Glutamate can amplify inflammatory and excitotoxic injury, my response to lamotrigine could be interpreted in that context!?

@Zedzies @SalvMattera I m about to try

@SalvMattera Have you teied ARA-290 for SFN. It works ridiculously well for sarcoidosis induced SFN. Better than IVIG.

I'm still ~95% recovered from Long COVID after ~9 months. But next week, I have an appointment with Mitch Miglis, an autonomic neurologist at Stanford who is involved in Recover. He did my tilt-table test two years ago (which I passed, my POTS symptoms are not consistent). Now I'm just going to ask him what he thinks about my random POTS episodes (appear to be triggered by exposure to other pathogens) and the possibility of trying IVIG now or in the future, given my diagnosed SFN. Does anyone have any questions they'd want me to ask him?

@SalvMattera BPC is knowned to create dissociation/depression/anhedonia in many people i think 1/3 of patients, but LC memory here so pls forgive if i m uncorrect on this number 🫠

I stopped injecting BPC-157 and NAD+ a couple weeks ago. Maybe it's a coincidence, but since then I've noticed I feel happier, but I require more sleep. I had been injecting 50 units of NAD+ every other day, and 15 units of BPC-157 daily

@EliFarts Bonjour Elie ! French writer here 👋Would love to send you an email or PM about a comedy projet. Is it possible to follow me back ?

I like to leave one stone unturned. More fun that way