Treating Autoimmunity in Long Covid & The Role of Viral Persistence | With Prof Carmen Scheibenbogen
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- Опубліковано 4 чер 2024
- This is the second in a three part series where Dr Asad Khan and I talk to Professor Carmen Scheibenbogen from the University Hospital Charite in Berlin. She’s a long recognised expert in the field of ME/CFS, and has recently been researching patho-mechanisms and treatments in Long Covid.
In this film we ask Professor Scheibenbogen about her thoughts on viral persistence, and how you’d go about treating auto-immunity in the context of ME/CFS and Long Covid.
Part 1:
• The Two Types of Long ...
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The Long Covid Handbook (Feb 2023) by Gez Medinger & Professor Danny Altmann (and published by Penguin Books) is now available in paperback, ebook and audiobook. A singular resource that brings together everything patients, clinicians and academics have learnt about the condition to date, as well as lessons from sufferers and researchers of ME/CFS and other chronic conditions. It offers world leading expert advice on understanding, managing and treating Long Covid. It is available from the following links.
US: a.co/d/0gvkJCU
UK: amzn.eu/d/9KjurGb - Наука та технологія
The Germans have got their act together; the importance of once physically and economically active relatively young people now being out of work, or having a reduced capacity to work, in substantial numbers has been recognised by the treasury and medical profesdion as pressing, resulting in funding a sleth of trials. Hopefully, the UK and other nations will learn from Germany and get on board , fast ! Seems totally plausable that a disease presenting multiple heterogenous symptomology would be effectively treated by patient -specific selected drugs ( ie individualised patient medicine ). Thank you Gez for all the hard work and research to make this really interesting video when you're still struggling .❤
This does not mean that one gets help easy. Living in Germany. Postcovid problems since over 1 year. Medicals refusing diagnosing because everything is 'normal'. Meanwhile nothing is like normal with me neurologist says: could be psychological. Have to wait months for an appointment only to be sent away after 5 minutes examination. So there are a few Postcovid clinics far far away from me (Berlin) and months to wait.
@@einbisschenwasvonjenem This is further ahead than the UK. Everything you hear about the NHS imploding is true. EG :skin cancer patients diagnosed by their GP as having cancer wait 9 months to see a dermatologist to begin treatment. You have to continually beg for treatment . Decades of underfunding plus a rising population give this destination . All the best with your treatment . Gez's videos as self -help can be relied on when you cannot access the care you need , Sorry to hear that.
Unfortunately, that is not true. Only patients in and very close to Berlin get access to the Post-Covid practice of the Charité after a long waiting period.
Us others are regularly faced with doctors that gaslight or believe the symptoms are purely psychosomatic or even psychiatric. There are daily reports of people, forced into rehabilitation and acitvation programs, that make them crash and bedridden for months or years afterwards. There is a neurologist professor, whom many doctors believe, that maintains, if there weren't any articles written in the newspapers about Long Covid, that no one would have the illness. It is ridiculous.
Prof. Scheibenbogen is amazing but she is very much on her own, with a few exceptions.
My Post-Covid practice gave me a sheet with instructions about pacing (knew that already), that was it. No off-label medication, no treatment plan, but (again) the proposal to seek psychotherapy to deal with the influence of my illness on my life. (I have ME/CFS and am unable to work. I am also mostly house- and bedbound). Not because psychotherapy works or can treat Post Covid, but it simply is the only thing they can prescribe. And whilst I value the moral support, psyche is the least of my problems. My weakness, fatigue and absolut intolerance of even small exertion in daily and necessary tasks is.
Germany does not have their act together, Prof. Scheibenbogen does. She is, however, disliked by a lot of the doctors I visited, who, without much knowledge at all, think they know better. Fatigue = psychosomatic. (I wish it was....) Unfortunately, my story is typical.
@@111verena Sorry to hear your account Verena and l do hope you can get the treatment breakthrough you need for your cohort if symptoms .
In the UK the NHS healthcare system is on the brink of collapse . Trying to get a GP appointment at some surgeries is like trying to break into the Pentagon. Huge waits in Accident and Emergency . Hours waiting for a 999 ambulance and a year long wait to see a hospital Consultant . Some have died waiting for assistance in all of these options . It's truly terrible here with no private health care insurance or money to pay privately, which is very costly.
@@carolenmarch7445It's a shame....
She gets it. Many of us don't have years or even decades to wait on the process to officially approve treatment
I've been following you since 2020. I had LH after I got Delta in Aug. 2021. Fatigue as if I'd aged 50 years overnight, foggy brain and neuropathy on one leg. A year later, via the FLCC, I added LDN and within 3 months I could see a difference in my thought processing, within 6 months fatigue was better and within 9 months my neuropathy was 80% better. Thanks for your continued courage and hard work. 🙏 Following from Minnesota.
Great to hear you’re doing better! Best of luck in your continued recovery :)
what is FLCC and LDN?
I followed the FLCCC protocol of Ivermectin, Hydroxychloroquine, LDN and Nattokinase. Didn’t see one bit of improvement! 😔😣
STILL suffering terribly with MCAS after 2+ years of getting Covid! I want to die!!! My lungs have really taken a beating. I am a shell of my former self!
@@leannshort2211 this is the most common outcome from the FLCCC protocol
@@RUNDMC1 What is? Not seeing any improvement?
Seems like Germany has been very active in trying to solve this puzzle. I'm in the US and not getting much help. My brain is being attacked by either my immune system or viral persistence or something. I haven't had any luck on any treatment. I don't know what to do at this point.
Look into the Mechanics and Techniques on the Gupta Program, ME/CFS is caused by a conditioned trauma which is constantly overstimulating specific parts in the brain and these parts have a direct influence on the nervous and immune system.
They are trying for sure, but bureaucracy makes it hard here too. There are a lot of organizations but everything takes a really long time and some doctors still don't take us seriously or tell us to just drink more water, do sports and it'll be fine. So you're not the only one feeling helpless. Hope you feel better soon!
Have you tried not eating? and if you can avoid sugar? It might be as simple as inflammation that is messing your brain up.
Same. Feels like the brain is under attack. I now only have enough energy to limp from my bed to the toilet.
Prof. Carmen Scheibenbogen has been very active. And very few others:
Most German doctors, however, are not. The best most of us patients can get is being taken seriously. That happens rarely, though. Most of the time medical gaslighting is the response.
Thanks for this, Gez. I've been following your videos since I developed Long COVID early in 2020. It was quite bad for an entire year. I would have windows about every 5 to 6 days where I didn't feel "as sick" followed by periods of illness that ranged from heavy fatigue to full-on COVID symptoms. I reluctantly got the Pfizer jab on March 14, 2021. I was in a window when I got it, and I didn't sink as deep after the window closed. After the 2nd jab, I stayed in the window and returned to baseline over about 4 to 6 weeks. My wife had Long COVID too, but didn't react as dramatically to the vaccine as I did. She did improve, but the doctor said my case was probably largely viral persistence while hers was more of a "Viral Fatigue". She is doing much better now, but still not 100%. I have contracted the Omicron variant twice since then. No return of Long COVID though, and symptoms were extremely mild.
i got long covid from omicron. the mild one☹covid is covid and its just a crap shoot who gets this and when!
@@Seagoatsunday i as well got long covid from omicron. it was so mild, my seasonal allergies cause more problems then the omicron version did
@@shanepond6433 you got LC from a mild infection? Omicron gave my whole body a complete shut down,...I couldnt hold a pencil! couldnt walk for months too dizzy to drive for a summer! tinnitus and migraine for a year...still have tinnitus its a living nightmare, heart racing waking me up every hour! anxiety so bad in the morning i barfed in the sink! and the whole time your so desperate for help your experimenting with crap and non of it works! still a crap show and pretty sure this winter will SUCK! any LC symptoms from this wretched disease is bad but the whole thing for me was made worse by people not understanding. im better than a year ago but ptsd from this and fear of reinfection this winter are an ongoing nightmare for me. hope they figure this crap out! i was a normal person before this...even nordic skiier😔
@@Seagoatsunday You vaccinated, and then caught the virus?
Wait wait wait.. prednisone, which is a steroid, would dampen the immune system so it would help with inflammation due to an autoimmune condition, but if the inflammation that is happening is related to Spike protein or viral particles left over that are triggering the immune response and subsequent inflammation, then the inflammation is just going to come right back as soon as the administration of the steroid is discontinued.. The problem is figuring out how to get rid of the spike protein/viral particles/debris... If it's hiding out in "safe zones" within the body or within a layer of protective biofilm or whatever the case may be, we have to find a way to free it from its safe zone and in the case of active spike protein, make it vulnerable to attack by our immune system and elimination of it.. If its left over viral debris, we have to find a way for it to be "gathered up" and excreted... Steroid suppression of the immune system is not a long-term solution. It's barely a short-term solution if someone is going through a cytokines storm, I believe. But beyond that, it's just a Band-Aid and staying on Prednisone for very long creates a whole lot of very bad situations for people! Been there done that😫 All bad if used longer than for just the acute phase..
You’ve summed the conundrum right up! There’s an argument for trialling steroids just after acute infection to see if it stops the inflammation cycle starting and helps prevent LC
@@RUNDMC1 thanks for the response🙂 I was on prednisolone for a total of around 2 months when I was tapered....almost all my symptoms came back so i could be wrong but since i have no personal nor familial history of autoimmune diseases, im leaning towards there being either some active spike protein replicating in my system or some viral debris that hasnt been cleared yet that us triggering inflammation and my ongoing symotoms.....im 6 months out from the infection so i feel like i shouldve gotten better to some degree by now but havent....since last dec and in chronological order, ive been to the ER two times, seen my primary care physician twice, saw the cardiologist who ordered a nuclear stress test and a 2 week heart monitor (awaiting results), two different rheumalogists for a total of 4 appts and another appt in 3 weeks, spoke with a pathologist, had a pulomnary function test done which showed nothing wrong, now im awaiting my appt for pulmonary stress test with Vo2(?) as well as an appt in august with Stanford's PACS clinic....i was on prednisone and tapered off, prescribed celebrex which did nothing, switched to Diclofenac pills that didn't help AND tore up my stomach even while taking Pantoprazole to decrease stomach acid. I am currently on nothing pharmaceutical now and started an herb and vitamin regimen with only the best bioavailable forms and referring to actual medical studies, not random internet suggestions and opinions based on how to treat covid or autoimmune diseases..
The rheumatologist originally diagnosed me as having rheumatoid arthritis but I didn't fit the clinical signs of that although i had a positive ANA and Ant CCP of which the ANA has turned negative... Eventually she changed her diagnosis to fibromyalgia which seemed more likely but my symptoms don't fit in the fibromyalgia box either. The rheumatologist said she thinks my antibodies are out of whack (not the actual term she used) because of my second covid case which was practically asymptomatic. (My initial covid case was oct 31st 2022 and my most recent was nov30, 2023 and ive never been vx)d...)
So now im like, well what the heck can i and others do next to try and reverse this? I do not believe for one second that long covid or most autoimmune diseases that i or others are suffering with are permanent despite the medical community's assertion-i believe there is a way to reverse them and return to a normal state. If it can be turned on, it can be turned off.., we just dont know how yet..
As of right now, I am 39 hours into a (hopefully) 72 hour fast to see if this will help to clear viral particles/debris and possibly help with mitochondrial "recycling" of potentially old and damaged mitochondria and the production of new mitochondria as mitochondrial damage has been mentioned in numerous studies as well as the benefits of extended fast. Hoping for the best cuz don't have much else to work with at the moment.
My story seems to be similar to yours. Got ANAs positive but no fitting pathology picture. Taking a bunch of supplements, now l added nutritional changes (keto and IF because of the mitochondria implications). Trying to fast a day per week. Good luck to you!
@@monag.769 Hi mona, i did a 72 hour fast out of desperacy this last week and i felt SO AMAZING! Def try fasting and work uo to longer fasting if your health permits it. Good luck to you also!!
Look up Nattokinese, I hear it breaks down spike protein.
Thank you for another great contribution Gez! We are fortunate to have researchers such as Prof Carmen Scheibenbogen leading research investigations/pulling the pieces together. She certainly has the right bona fides, very impressive.
These are really helpful videos inasmuch as they show that someone is taking an interest in the condition. I just wish some of this would filter down into the real world. I've had long covid since May 2020 and the only treatment I've been offered is being told how to breathe, which I think I kind of already knew.
Good to watch all these informative videos. Not sure how doctor's yet have not figured out that this is an out of control inflammatory response in the body that causes this long covid. I was super competitive athlete prior to covid, now mega brain fog, muscle inflammation just lifting groceries into house, and malaise. All blood work CRP, CK, etc is fine. My microbiome is way off so maybe that is a role as well. I hope they can come out with a list of known medications that can target turning off the viral persistence for EBV, etc. and also a safe drug to just reset the immune system to normal again. The virus stays in the tissues and if you agitate them the system reacts again. Gez always has good info, and hopefully we can just start to get a list of medications that work correctly together. Good luck everyone with long covid. We are a forgotten group, just like many of the veterans out there. The government just does not want to fix this long covid issue.
Thank you Gez for these interviews! You are a great champion for all us Long Covid/ME-CFS sufferers. I've learned the most from your channel. It is frustrating tho when you realize that you know more than your docs. Because of your site I am now being treated by Dr. Jordan Vaughn with anticoagulant meds. I had APS most, if not alll my life and had 35 miscarriages from it. Now with all the symptoms LC, and b4 that ME/CFS, I finally have hope that I can get better. Thank you for all the work you do while having symptom issues as well. ❤
Great you’re finally seeing some decent care :)
Don‘t praise Germany too loud. The crowd of the long haulers here does not get much help either, and Charité clinic is doing a little study with very few people. They don’t get the fundings they would need. I am one of the many here with a bunch of symptoms, ANA antibodies l found myself and nobody knows what to do with. So l‘m on my own like all of you out there…l started strict keto in addition to all the expensive supplements l‘m taking, and if it does not help enough in a few weeks l will switch to carnivore. All the best to you all! Greetings from Berlin🤗thank you Gez!
Exactly.
Frau Prof. Dr. med. Carmen Scheibenbogen thank you for sharing. Brilliant analysis and eloquently conveyed. You know your subset well. Best wishes with influencing effective treatments soon. Thank you for your efforts. 900+ days and counting. Hellish 🔥. Take care and thanks again.
And yes, it’s part of the coffee plant and I know if you’ve had Covid for a couple years you will try anything to get rid of the pain and this works for me. I don’t know why what’s in the Kratom, but it works.
I'm a sufferer for 2 years. So exhausted and really tired of being so out of balance.
Once again many thanks Gez. Your videos are very much appreciated.
Thank you Jayne!
Does anyone have urine retention? I’ve had it since Covid. As soon as I go, I have to go sit and concentrate and more comes out.
Contraction of abdominal muscles helps with bladder emptying, once you think the bladder has emptied give a few contractions...men are much more experienced at doing this, having a longer urethra ( pee pipe!) to empty 😅.
Thankyou again for bringing this information to us all! You're work is greatly appreciated!
Thanks Gez - excellent as ever really appreciate this. 😊
Thank you Caro!
@gez. please discuss Vitamin B1 with regards to dysautonomia. A lot of people have benefited from vitamin B1 for Long Covid and a lot of autonomic dysfunctions.
I take B.1 and do nothing for me
@@romygime5822 what dosage?
Long Live Carmen!
Good one, as always
Does Nattokinase desolve the Amaloid Clot as oppesed to normal clots? Also how do we stop the body re-producing the m-RN& S1 Antigen? This is the question no one seems to have answered!!!! if this isn't figured out soon we're going to drop like flies!!
Yes on the nattokinase. Keep looking there are studies and videos. CBD prevents infection and may restore cellular structure. NAC attacks the spike protein enabling removal. This virus will be with us a long time, plan on permanent changes. Get some sunshine early & late day for D and red light therapy (no sun block).
Some interesting research on use of Turmeric.
2,5 year postcovid with pots, not able to work, bed 12-14 hours a day. I had to take medicine for astma, depression, pain, antihistamines and sleep. I did a lot of smoothies and other recommendation of food from nutritionist. But I still had a lot of symptoms. THEN I SWITCHED TO KETO/CARNEVORE DIET AND WOW!!! A lot of symptoms got a way and I have cut off about 90% of all meds. Fasting helps and vitamin D.🎉😊 Losing weight and mental health/ memory is better. I am still sick but a BIG RELIEF from everyday struggles.
This just goes to show that each persons experience is unique. Meat made me sicker and sicker. I went vegan and dramatically improved.
It would be good to know whether the IgG4 antibodies produced after the booster shots are responsible for autoimmunity since evidence suggests they promote Cov-2 viral infection in the absence of an adequate T cell response, especially T reg cells that damp down the cytokine effect.
Thanks @Gez. Is there currently any way of testing for autoantibodies? I can't believe how hard this has been to diagnose.
Not that your doctor will be able to help you with. You can get a test for APS but that’s not quite the same
Found it!
Published June 12/23 STUDY: Overactive Inflammatory response could be at the root for many long Covid cases.
How come the immune system can't go back to the way it was before?
@@ThanhTran-et7ng It will, it may just take time. There could also be other factors at play here, like some kind of underlying disease or illness that Covid brought to the surface.
For example, after struggling with debilitating symptoms for a year and a half I was finally diagnosed last year with chronic Lyme, co-infections Babesia and Bartonella, and also EBV.
These things triggered Mast Cell activation in my body a long time ago, as I’ve always had some weird things going on with me for years, allergies, sensitivities and congestion issues for years. It wasn’t until I got Covid that all my symptoms blew up 10 times worse and then some extra ones! It took getting Covid to understand what I’ve been going thru all my life was related to all the things I listed above.
Oh and I had to find a Naturopath to test me for Lyme because reg mainstream Dr’s will do the Lyme test thru the CDC which hasn’t changed their method of testing in over 50 years I believe. It’s not accurate. If you ever get tested for Lyme ask to have the Vibrant Labs test done from California.
H2 blocker Famotodine was a game changer when it came to reducing POTs attacks and persistent jaw and joint pain that included paralysis. I then went on to add H1 anti-histamine Hydroxyzine (Atarax) which after 3 years of insomnia/sleep disturbance allowed me to sleep most of the night. It also reduced symptoms if I came into contact with triggering foods. Sadly, for me that's now gluten and lactose (hydrogen breath test confimed) and high amounts of alcohol or chocolate (probably the histamine). I should note I gained weight very fast with Hydroxyzine and had to titrate down.
What stopped me being bed bound initially was quitting gluten and breathworks. I also support the acid based disruption theory as mentioned in this series, as I massively reduced acidic and fructose foods and feel it's dampened down symptoms and reduced irritable bladder issues. I noticed results in energy levels with Natto immediately and also saw a big improvement with D-Ribose. I can function 60-70% with both of these. As stated by many, breath works and a little light excercise accounts for a large chunk of my feeling much better. My cognitive issues still persist and I failed a neurological evaluation. I'm finding this really frustrating. Sometimes I have to leave a social event early because I can't remember words or become fatigued trying to engage for more than an hour. I had to call a painting; a square the other day, as I couldn't recall the noun for it! Only Natto has improved this a little. I'm considering looking into attention deficit medication now. Has anyone seen improvements on these? I know there's been various small studies. I also relapse badly after a subsequent covid infection. Has anyone been able to get Metaformin or Paxlovid to reduce this?
Also, Gez - your work has brought about most of my partial recovery. I rave to everyone about how thankful I am for your channel.
Anyone tried LDN yet? I'll be trying it soon. I've seen some people have success with dysautonomia and many haven't. Another person having success with midrodrine for POTS/dysautonomia. I know it's slightly off topic, but also on topic.
What was the name of the medication she mentioned that could possibly help with the auto antibodies and ongoing creation of new auto immune cells? I couldnt understand what she said.
Thanks!
How to know if i still have these anti boddies? Is there a blood test I should ask for? 2 years of LC and getting worse. Been getting different healt issues,I know it’s because of covid but doctors just don’t get it. I know it’s inflamation.
could you list the drugs she mentioned?
After the description, click “more” & scroll down to follow along with the transcript
Ah 😂 yeah I don't think so. The transcript and the CC says Afghanimot. Please Gez list the correct name of the drug being used for POTS. THANK YOU!
6:14 rituximab
7:02 efgartigimod
10:04 vericiguat
@@RaidiusInd THANK YOU! She was/is wonderful, but seems to follow the 'insider' pattern of racing through T H E most important and novel elements within any given presentation. (Of course the naming of these drugs has not helped the situation, in this case)
If you don't mind, I am going to copy and past your comment for others (and myself) to find more easily, rather than as a sub-comment.
And there are the traditional steroids of course like prednisone
@Gez wondering what clip on mic are you using in the first seconds of the vid?
2 yrs sufferer great vid
I’ve got a little RODE set up with lapel mic.
When will the Post covid POTS study be completed that this doctor mentioned?
Gez ,you clearly seem to be improving even if us viewers may not be able to guess the exact speed of recovery.
For a while we were hoping that you were onto something with natto/Serra/lumbro etc. if not these thrombolytics, what would say have helped you the most with your recent improvements?
Your long time follower and an eleven month long hauler. Thx again
Taking some proper time out from work to R&R is probably what’s helped the most recently. Natto / LDN etc can really help some long haulers - just not me.
LDN?
Low Dose Naltexone after several months (combined with daily H1 & H2 / Ruptadine & Famotodine) seems to have completely reduced my neurological issues. Are you taking it Gez? Did it work for you?
How much LDN are you taking? Are you taking both antihistamines?
@@Mau365PP yes as I said I take both antihistamines because I’m diagnosed as having Mast Cell Activation Syndrome (have had pronounced symptoms all my life since birth). LDN I started at 0,5 and worked up to 4,5mg
What neurological symtpkms did you have ?
@@backalleygaming7096 in the beginning heat and headaches, 2 episodes where I couldn’t talk and felt like I was having a mini stroke, stuttering, extreme brain fog and problems with concentration
I had low Antibuddies on my ANA test, great video though thank you
hi Gez, thanks so much for your generous work - the most helpful and reassuring resource on the web, by a long margin. I'm a family doctor in Vancouver and, I must say, you have a gift for knowledge translation. I have a question for you. I think I have watched all your videos, but I don't remember much about HELP apheresis, HBOT, or antiviral treatment like Paxlovid and others. I am looking seriously at all these, and considering some big expenditures.
Hi Robert. Sorry to hear you’re struggling too :(
Haven’t made a video on those, although I have talked about them on social media. Here’s my take based on the accounts I’ve heard from a selection of people who’ve done them:
HELP Apheresis - expensive and does make you feel better for a short time. But only a minority seem to get long term better from it.
HBOT: recommended if you can afford it. There are some trials showing it’s effective too. Again the issue is slipping back to old baseline once you stop.
Paxlovid: if you can get it, worth a go. Some do report improvement, but it’s a minority.
Best of luck with whatever path you go down!
Hi Robert, I went to Oceanside Hyperbaric in Parksville for 40 hbot treatments. It was affordable. Good luck!
@@heatherwelch9509did you see improvement long term afterward? Thanks
@@RUNDMC1 I live in Ireland, got Covid in March, 2020 with long Covid. Got reinfected in July 2022. We have a non-profit HBOT centre about two hours from my home. It was a life saver for me, really pulled me out of the ditch almost immediately. I was still quite impaired but at least able to get out of bed. I spent a winter travelling to this town (Bandon, County Cork), renting a room and doing lots of HBOT. Over time there was a gradual progression of improvement. I had no other medical intervention until February 2023 when a neurologist put me on a beta blocker for what he called silent migraine. It was absolutely hideous-side effects galore and my BP plummeted to 82/55. I hung in for three weeks because I could see it was helping some of my cognitive sxs. I tapered off to one every other day which seems to be maintaining things.The beta blocker experience was so terrible I no longer trust doctors at all and do not see them as a resource. I realise this is irrational as the neuro actually did help things. But the price was high.
The gains I made with HBOT have held over time. I'm doing much better now, though I've aged much more than three years.
I have had long COVID for 24 months now and have been feeling a little disheartened to hear some are 3 years in. I know my ME/CFS was reactivated so I went hard into the CF protocol. I am trying to not let this get me down, but at times it does.
The emotional side is one of the hardest things. I’m 3 1/4 years in now
just let me tell you, that in groups of LC i've read of several persons who step by step got after 3years, now 4 better and better, with for instance antihistaminicum, pacing, hbot or aphareses and other things. its never to late, but takes time..
Gez, truly appreciate you & your hard work. My question: I had Hashimoto’s (autoimmune disease against the thyroid’) & was doing well controlling the TPO antibodies through diet. After Covid my TPO levels were tripled, and keep rising. So I know Covid can increase TPO antibodies. But is the professor saying that new & different antibodies are being created as well?
Correct
Its such a shame preventative therapy were banned, censored and discouraged to sell their vaccination. I hope all who needlessly suffer recover.
What was the name of the newer drug targeting auto antibodies for which there are trials? I couldn't understand her.
Efgartigimod AKA Vygart
The German d9ctor is so informative. Time for the Nhs to,get it's act together.
Great video. Are there any ways of getting treatment on the nhs? Should i bother with them anymore or can i apply for LDN for example? How can i educate and get support from my doctor who openly admitted to only following MSM and medical news today to get her post covid/vaccine information? 2.5 years here. Am at a loss on every supplement under the sun plus Yoga.breathing work. Cold showers meditation cbd. Still having massive relapses of symptoms from just going to the supermarket.
You might get help on symptomatic treatment from your GP, you’re very unlikely to get LDN - you’d have to go private for that.
Need to rest as much as possible give time the body to heal.
What's the drug for POTS mentioned?
Efgartigimod AKA Vygart
Thanks Gez. I finally started nattokinase almost 3 weeks ago and so far no improvement. (Still mostly bed at this point😢) Did you try Natto and if so did it help? I did listen to most of your book but now can’t remember that if it was in it. I’m happy you are able to start another channel doing something you love🎉
I did try Natto but didn’t do much for me unfortunately!
@@RUNDMC1 so does that mean that nattokinase and Serra are no longer a part of your daily supplements stack? Thx.
@@Mansfield2375 I’ve stopped taking them, yes
Sorry to hear that May I ask how much you took or are we not supposed to ask that?
@@dianalapointe5501 Diana, I am trying it for the first time w/out food (duh), am curious of the dose you are taking? Twice a day, on empty stomach? (Any negative effects on digestion?).
These questions are for anyone, of course. . . seeking NK as fibrinolytic /anti-microclot . . .
Please let us know if they have a clinic for people with long covid.
Where are you? In the UK they have a few dotted around . I believe there's one at UHCL lf you are in the SE. It will need a GP referral .
I've been told I have chronic lymes now... Already on ldn and alot of supplements... 🤷🏻♀️ I sleep 4 hours a night... It's hell
What is the name of the drug she mentions which is used for POTS please? Can't understand her spelling of the drug. Minute 7.
Ivabradine maybe?
How were (auto)antibodies removed, in this case??
Filtration via immunabsoption
FYI
@ 6:14 rituximab
@ 7:02 efgartigimod aka Verga??something
@ 10:04 vericiguat
Drugs mentioned by Prof Carmen Sheibenbogen.
Lots of requests for these to be spelled out - thank you!
What about jak inhibitors? Seems like most of us are dealing with inflammation from our immune system similar to rheumatoid arthritis. Has there been any clinical trials using these meds? I'm pretty sure our immune systems are messed up causing lots of harmful inflammation.
Not that I’m aware of but agree re inflammation
Some guy on Reddit said its deleted his pots and he recovering from it
Timeframe wise do you think they will develop treatment for all forms of long Covid ? And how long do you think that’ll take? Do you think it’ll just keep symptoms at bay ? Or full recovery.
Honestly it’s pin the tail on a donkey time
So we have no idea
Never in the United States. If you have LC the best place for anyone is probably Europe. People in the US will just continue to suffer and wear out their bodies until we die. I'd pay anything to have my blood tested, or see a doctor who knows what LC is. The only positive thing I can add is I found a product that helps with LC hair loss, since I almost went bald, Vegamour Gro shampoo and conditioner and serum. I've tried every supplement and product and I can see my baby hairs growing.
@@melanieolmsted6740I am from Europe no in our country nobody helped me .. 🤷
@@melanieolmsted6740 go U.S.! what a shitty dog eat dog place.. yes im merican with LC.
Hi Gez, thanks for the video, have you read any good books about mindset and illness? Eg Dr Joe Dispenza etc
Personally Joe D isn’t quite to my tastes (feels a bit like a cult) although it can be helpful for some people. The one I’d really recommend would be Cured by Dr Jeff Rédiger.
Please let us know if there is clincs for long covid in South Africa.
Yes! Dr Jaco Laubscher at Stellenbosch Mediclinic.
Dr Laubscher at Stellenbosch, but sadly he doesn't have ethical clearance for his treatment regime for children under 18 - my son is 15
@@melaniesmith5058 I took nattokinase and serrapeptase with Dr Laubscher's blessing. My blood work performed in the same way as the patients on triple therapy. I guess nothing prevents you from buying these over the counter supplements for your son. For me getting rid of the microclots was just a partial solution, though.
Wouldn't it be great if all these clinicians and scientists studying LC had a world conference, and put their heads together. Bet they would quickly come up with some great ways to go forward
How did they wash out auto-antibodies?
Look up immunabsorption
@@RUNDMC1 could plasmapheresis work as well? Or IVIG?
Wormwood with Falvoic acid seems to help
Hearing alot about wormwood alright.
Any thoughts on iodine protocol?
@@pine_needle_tea Never heard of it
Isn’t immunosuppressive drugs horrible for your gut health?!
I would LOVE to stay on a high dose of Prednisone, but it’s not good for your body, so how long would you need to be on it??
I have to keep doing short bursts of low dose Prednisone to help my symptoms. It doesn’t take it away completely, but it sure helps. The constant coughing and hacking, tons of mucus and mucus plugs. Not being able to get adequate sleep at night is REALLY taking its toll on my body and mental state! All the different food sensitivities, I’m down to eating 8-10 foods. I’ve lost so much weight and muscle mass that my skin is just sagging on my body now! I have never been overweight so I couldn’t stand to lose any! I am 5’9 and down to 130 Lbs! I look so emaciated, and scared to death! Could this shit possibly turn into Cancer?!! All this inflammation and for SO long can’t be good for your organs! The only thing that gives my body relief, and the ability to sleep at night is the Prednisone!
Thank you again Gez for another very informative video. ❤
I really hope this gets started very quickly because I am getting very worn down. 😔
Is there a treatment for this yet please?
There is a long list of treatment, all depends on how much you want to pay and your symptoms.
Im on rituximab for ms and have long covid since feb 22’ and it didnt help at all with my long covid.
It makes sense if the virus stays in the bone marrow for Mast Cells to continuously be on high alert and continually causing inflammation because Mast Cells develop in the bone marrow! And POTS is usually almost always associated with MCAS also. My Mast Cells have been wreaking havoc on my body for over 2 years now. I’m over this shit!!! 🤬😔😭
Can LDN help please?
What is LDN?
Thank you for all of this information. I have had long covid symptoms for 3 years now. My son who is 3, had covid when he was 6 months is having autoimmune issues as well. The last two blood tests he has had showed high CD3 T Lymphs, high CD8+/CD3+ (Absolute) and high CD19 B Lymphs (Absolute). I am convinced it is related to covid. He is otherwise healthy, so I ma not sure what to do or if I should be worried. I would love to get some guidance. His allergist and pediatrician are not very helpful.
I’m so sorry to hear this Ana :(
Prayers for y'all ana . Doctors have been useless
I haven't read anything applicable to children with Long Covid. I also have my suspicions that the issues my son is having are somehow related to Covid. By the end of 2020 his sensory sensitivities were heavily exacerbated from where they had been prior to Covid. By the end of 2022 he was diagnosed with autism. I can't try any of the supplements on him that I have been taking for my own Long Covid, as he is only 5.
histamine intolerance ?
Thanks Gez.
They say correlation doesn't equal causation, but I see a snowboard and wrist splint in the same shot here. Hope you're doing alright in any case!
Haha, well spotted! Broken wrist was from skiing in Jan (not snowboarding, the usual breaker of wrists). It’s still completely wrecked, wonder if hypoperfusion is impairing bone healing? 🤔
@@RUNDMC1 ah dang. Sorry to hear that. Take it easy!
How are you feeling these days Gez?😊 I cant stop catching viruses and its taking a toll on my immun system it feels like, which is already weak. So its a vicious circle.
Still struggling tbh
Oh! Have you tried the antiviral, Valtrex? I used to take it regularly for cold sores, but I think Lycine (sp?) is recommended.
I keep getting sick from pathogens! Mold, several Lyme infections and a live parasite are keeping me busy! Yuck!
@@Tinyteacher1111 valtrex does nothing it makes you more tired actually
@RUNDMC1 I don't think people realise the extent to which it continues to be a struggle. There is still a narrative that says there should soon be a recovery. I have stopped replying to these blithe comments from friends about how they trust I am now 'much improved', as if I can make it happen! We hope that there WILL be recovery, even if it is very slow, but in the meantime we need folk to realise that living with long covid is so tough and mentally challenging too. It takes a good deal of mental stamina to endure. We so appreciate all that you do, Gez, but recognise that this comes at a cost. Look after you first and foremost.
@@RUNDMC1I’m so sorry! Me too! 😔
Anyone gone on to develop a recognised autoimmune disease? Reason I ask is that I have been diagnosed with Graves Disease three years after Covid. Now that is something the doctors do know about!
Incidence of IBS gone up hugely across the UK (doubled) the last two years
@@RUNDMC1 Unfortunately Graves Disease is more serious than IBS so seems I drew the short straw.
@Gez Medinger please spell the correct drug name being used for POTS. The CC and transcript didn't quite get it saying Afghanimot like an Afghani mutt canine.😂
😂😂😂
if i have all these antibodies why do i KEEP gettig COVID!?
Because they’re auto antibodies - attacking you not the virus!
This was a bit dissappointing, you didn’t specify what autoantibodies are typically present in findings?
GCPR
Long Covid , existing auto immune disease , my Novavax helped in a minor way ???
two o's in Goose...boys.
Not enough profit in mentioning near infrared light as therapy that works ? Light and love or love and light, which either is easier.
I’ve spoken about red light therapy on the channel before. Absolutely no evidence beyond the anecdotal though unfortunately! And have covered the mind-body connection too (and invoked the ire of many in doing so).
Researchers are hunting for someone in Ohio who has apparently had covid for at least 2 years, there is hope that it can lead to more "understanding" (I doubt this myself) of how or why covid lingers so long.
Congratulation to the guy who convinced his boss to pay him to look at this guy's dodo for over 2 years.
Typical UK lagging behind leaving those with LC abandoned and untreated
Top Gun Maverick is NOT better than the original....the trophy for the alternates is in the ladies room.
You should watch my video on it and debate me there!
@@RUNDMC1 I can't find the video...
@@lgmnowkondo938 link is in the description!
@@RUNDMC1 found it and commented...several times 😃
@@lgmnowkondo938 haha, nice!
Vaccine.........
What is doing WHO? Nothing? 🤷😑
Right
WHO is helping educate the world about Long Covid.
@@ex8280 hahaha
Low Dose Naltexone after several months (combined with daily H1 & H2 / Ruptadine & Famotodine) seems to have completely reduced my neurological issues. Are you taking it Gez? Did it work for you?
Awesome that it worked for you! My son has this, but his doctors think I’m crazy for suggesting this protocol!!
Didn’t work for me unfortunately
@@RUNDMC1 that’s a bummer. My symptoms got worse before they got better. Took many months before I noticed a real improvement
@@victorianalin5885 placebo effect
@@victorianalin5885 hi, was the purpose exclusively to resolve your neurological issues or was it also to help address fatigue and Post exertional malaise (PEM)? And if it was also for fatigue -did your fatigue issues get resolved as well? Thx.