How Do We Speed Up Long Covid Research? | With Prof. Akiko Iwasaki
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- Опубліковано 14 чер 2024
- In this final film of the series with Professor Akiko Iwasaki, we discuss the challenges of the research landscape for Long Covid, and how we can go about getting answers faster - so all of us can get treatment sooner.
Hope you find it interesting.
That concludes this series, if you’ve got any thoughts or questions - please do share them in the comments.
REFERENCES:
References:
Viral persistence in Long Covid (PASC / Long Haul Covid)
www.nature.com/articles/s4159...
Immune profiling Long Covid:
www.nature.com/articles/s4158...
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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
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Frustration is an understatement. Our lives have been ruined and our life expectancy severly reduced. The most valueable commodity in life is time.
does LC really reduce life expectancy? where’s the research on this?
I'm sorry, but newness is not a valid argument. This condition is very very similar to MECFS and most people do meet MECFS criteria, an illness that has been around for decades. If doctors and researchers hasn't been busy telling mecfs sufferers that they're just lazy and hysterical, we wouldn't be here.
Correct! And long covid isn't new. Neither is Sars. They just tell us its nothing. I'm so tired, it's almost like they want us to suffer on purpose. If I EVER find anyone responsible for planning, making, executing, or covering up Covid 19 - I will neutralize them. Be warned. I have a hunch, RFK jr told us. They were also responsible for 911, read the work of chris bollyn.
Agreed. Especially when we also consider that the CDC was aware of both the existence of Long COVID and its similarities to ME/CFS in 2020.
Released yesterday on Dr Been channel. Dr Bruce Patterson (formerly of Stanford) presenting his company’s development of a differential diagnosis AI assisted protocol for distinguishing which CFS a person is presenting with. He claims accurate differential diagnosis.
ua-cam.com/users/livecH-8hMXcE2U?si=-c5h7Dpp1dwKZ7-G
My conspiracy minded brain tells me they know exactly what causes MECFS and they created a virus and vakseen to spread the love. That is far fetched, I know.
Yup
Since the earliest days of your first videos (yup, I've been following you since then), you have done SO much to push the awareness of long covid, and covered SO many potential causes and solutions, it is astounding how resilient the disease is to resolution! My journey started in January of '20 and despite all my personal research and self-testing, AND knowing I'm uncounted in all of it, while I remain hopeful, I'm also resigned to living with it, concluding long ago that ME/CFS is the likely path. I even lost my vocal cords early on and haven't spoken properly for over three years. But I have support communities around me so my tale is not so rough as so many. THANK YOU for continuing your push around all of this! It gives us all hope.
Thanks for the support Daniel. I do hope your recovery kicks in soon :)
For me it's motor skills which affect walking, breathing and digestion.
@@stephangauthier911 Oh, boy. Sounds rough. One day at a time gets me through. You, too, I hope.
You need end of life discussions and not this bull shit
I listen so carefully to the answers Sterling Professor of Immunobiology, and Molecular, cellular and Developmental Biology gives, because Akiko Iwasaki listens to the questions so very carefully whenever she answers.
Yes, I love this about her. She is so incredibly thoughtful and committed to getting it right. She really is the preeminent star in Long COVID research in my opinion. I wish she actually did have an open checkbook funding source like in Gez's hypothetical. She would make the absolute most of those resources (yet the Biden admin misallocated COVID research funds to mediocre, misguided people).
I got covid in June 2022 and never got well. My presentation is autonomic dysfunction, with POTs like symptoms, plus some brain fog. Got into my long covid clinic and got prescribed physical therapy. After 8 weeks of physical therapy, but I'm not 95% bed-bound anymore. More like 40%. I can do normal activities, just not normal amounts of normal activities, but it feels more like a life. The rehabilitation protocol used was based on Children's Hospital of Philadelphia Protocols for disautonomia. It felt "miraculous". I'm now working with a Personal Trainer, who knew my physical therapists, to build strength/balance from bed-bound de-conditioning. Rehabilitation is NOT graded exercise. More info on rehabilitation for the autonomic dysfunction subset of LC would be appreciated. Thank you for your work and skillful effort. You're doing an amazing amount of good for so many people.
I’ve made two series about it!
ua-cam.com/video/vX6Di21Z-4M/v-deo.htmlsi=uEktwDrPRRxQdIUT
ua-cam.com/video/Wf9yzUPqyBo/v-deo.htmlsi=hVNw2dQ2VLzDv8P7
Still here and still hoping that one day we will get help . Thankyou for all the work that goes into your videos
Thank you Ella!
I wanted to say thank you for all you do . I am a long hauler of over 3 years.
try thyroxine T4/T3 and B12
Gez, YOU are the shining star as well, mate!
Very kind of you!
Hi Gez. Thank for keeping this series going. The intervju with Akiko Iwasaki was great.
Thank you!
Thank you for this series, just wonderful. It's so encouraging to see amazing people like Prof. Akiko Iwasaki working so hard to help us. Thank you Gez for your tireless efforts to help our community. You're a real blessing to us all, and deserve a medal!
Info on LDN would be interesting
Thanks for these videos. They give us all hope in bad days.
Your contributions to the LC community are astounding and beyond compare. I purchased two copies of your excellent book a couple of months ago -- one for my family physician here on Vancouver Island. Glad to read you're currently taking time out to prioritize your own health -- you've given us so much! Much gratitude and all the best to you
That’s so kind of you, thank you! I hope you and your physician find the book helpful :)
Feeling very isolated and alone with my LC and just sharing my frustrations with people who 'get it’. I’ve been ill with Long Covid since 2020. It has been totally life-changing and is a daily struggle. I consider myself as disabled however in the country where I live they seem to believe that LC is solely related to the autonomic nervous system. My last visit to the only Long Covid Clinic in the whole country, left me feeling quite hopeful that I could recover. However when I thought back on what was said I realised that the gist of what I was told was to try to stress less (even subconscious stress that I'm not even aware of!). According to them, my physical symptoms are all a result of the imbalance in my parasympathetic and sympathetic nervous systems (as in I’m ‘stuck’ in the fight or flight response). The end result is that I am now more stressed than before going there! It feels like the ‘blame’ is somehow on me and from what I understood, they think that if I could make the necessary changes in my lifestyle- I would get better…. so it's my fault I have LC?
NOT helpful at all. I'd like to have a Dr. that has/had LC. No one can begin to understand the level of exhaustion and endless symptoms that we have to cope with daily and remain somehow able to function at some level. I’m sure my body’s autonomous nervous system is under a lot of stress because of my symptoms and not vice-versa!
I was told something !
Thank you Gez god bless you . Your really helping us with hope because am tead really i can’t imagine living with this sickness. Thanks 🙏🏾
I have been out on both as well as diagnosed and had the treatments for SIBO and MCAS Lupus and may other issues due to the Vaccine. My life has been turned upside down with almost no relief and life changing symptoms. I have tried almost 200 different medications, treatments, vitamins/minerals to try to help the immese damage. The night I was forced to get the vaccine I felt an immediate allergic reaction. The next morning I woke up and my body was 3x my normal size and my hair was coming out in clumps. I can’t eat anything but specific things so I don’t have a huge physical reaction everyday. But I deal with it on a level no matter what, daily.
I am taking Resveritrol, Nattokinase, Baby Aspirin, Vitamin D, Biotin, and Nutravol daily. Also have been given the Valtrex antibiotic. I have just ordered the NAC and Bromelain and DHEA-5I also added the “new Long-Vax treatment”, the Triple anticoagulant therapy; Plavix and Eliquis.
Update??
There is so much research booming about getting rid of the spike protein now. But which one do I choose?
I’m still just as bad as of now
@@dnigrl50 which one you're doing right now friend??
Thanks again for this series with Dr. Iwasaki. Her dedication and compassion is very much appreciated and I hope her dreams of funding and cooperation are achieved. Her and your efforts are so valuable - plus you are both so charming. :)
Haha, thank you!
Where are you? No videos in the past 3 months? I was just diagnosed with Long Covid and was hoping to get recent info from you. I hope you are well.
Thank you for your approach and content. My 17yo was just diagnosed with long covid after three+ years of symptoms. We did get a POTS dx last year, which helped, but we could tell it wasn't the whole story. Her pediatrician, who is wonderful, helped us find the rest of the story, and now I'm in the info deep dive to figure out what to do. There's a lot of nonsense out there and you are helping us find the good stuff.
Thank you Helen! I hope you manage to find a way of helping your daughter :)
Have her checked for Lyme!
I'm suffering now 8 months it's a nightmare I love this lady I think she really cares hang in there everyone
Looking forward to the “out of the box” series. I am excited about the ones you mentioned (so expensive!) and how about Wahl’s Diet, Stassis breathing, Energy work, homeopathy and meditation?
I’ve covered breathing and meditation already if you scroll back through my vids!
I would love to have the supplements Lumbrokinase, Nattokinase and Serrapeptase covered. I did all three this summer, and I believe it improved my health some.
They’ve already been covered as part of the microclotting series with Resia Pretorius, Doug Kell, dr./prof. Laubscher, etc. You can also find a lot of info online, on the long covid pharm d substack among others.
Thank you for all wonderful info. My daughter got covid Dec. 2019. (23 yr old) Yes!! She has SO many symptoms and only able to do ANYTHING for 5-10 minutes. We are following you closely.
Hi Gez. I'm really missing your regular video content - as I'm sure the whole Long Covid community is.
So just wondering - are you OK? Or have you recovered to an extent where you are too busy, leading a normal life (hopefully)?!
Thanks Gez, You are so right Akiko is a shining light. Her positivity is a real shot in the arm (pun not intended), and her charm a delight!
Anyone got muscle wasting? It's affecting everything, especially my shoulders/neck, back and waist.
Thank you Gez!!! Hope to cross paths and give you a huge hug one day - and I'm not a hugger. You give us so much hope in a space where there can so often be silence. Very grateful for you and your work.
Thank for this interview series! One of the most useful approaches that could be used to help identify aspects of the pathology that cause symptoms would be to compare assay results from people with post-acute infection syndrome (from before 2020).
Even if you don’t care about these folks, it’s an essential comparator group that will speed the rate at which pwLC will get their lives back. 😊
Thank you Gez...its always good to hear from you!!!
Thanks Kelly!
Many thanks, Gez. Sort of comforting. Love Akiko Iwasami
THANK YOU SO MUCH !!! it's amazing how you are using your nice energy to help us
I left a comment 2h ago about covering Brain retraining. Then I realized that you had interviewed Gupta about the Gupta Program. This is great! Other programs include ANS Rewired, Rebecca Tolin’s “Be your own medicine”, CFS Recovery, CFS Health. All of these programs also have lots of online free content too. Raelen Angel is an ME/CFS advocate with a UA-cam channel. Many of her recovery stories include people who have used brain re-training. She might be interesting to interview since she herself is not running a brain retraining program.
As always, thank you. Dr. Iwasaki is just plain wonderful.
I had gained weight and lost muscle mass from 2.5 years on the sofa (am at 3.5 yrs now) i cut out carbs ended up carnivore lost 35 lbs in 3 months. And in the last year and a half i have seen a major reduction in my brain fog. Carnivore folks claim this is a result. Long wind way to ask if you can do more diet stuff?
Wow. I also gained a bunch of weight and lost muscle/ metabolism and I'm so weak and still suffering. Cane down with it feb. 2020. Cutting carbs I believe is the only way to lose the fat now that I'm in my sixties. Virus aged me.
@@bellelacroix5938 I also got it Feb 2020 and am still too week to exercise to rebuild muscle. I am 72. Losing the fat was good for my mental health as well. Good luck to you
I'd like to know more about Paxlovid treatments. Anything written on this that my doctor could use to justify trying it and how to do that. Case studies, small trials...?
Gez, I'd also hope you'll cover LDN.
My doctor said we could my LDN, when she finds a protocol.
With whatever you cover, it would be helpful to have resources that a doctor could use to justify trying.
I'm in USA, and my PCP is willing to try things. As an example, LDN is a suggested treatment in a Mayo clinic paper on ME/CFS. there aren't large trials, but there is some justification and it's low risk. And, I guess also cheap. So, any literature on other treatments being tried would be very helpful.
Huge thanks, Gez, for the years of great videos !
Ive had a stroke and blood clots and im 42.. This is happen to me for over a year.. Drs shake there head!!
Thanks for all you do Gez , u give us long haulers hope 🙏 ❤
Thank you Holly!
What about LDN as a potential therapy?
Agreed. I would like to hear more about this as well.
Thanks again Gez for all your hard work.
Thank you!
Many thanks to Mr. Medinger for bringing to the general public all the valuable information. Also to all who courageously inform us. Thank you Dr. Akiko Iwasaki and I would like to ask the Doctor if researches are being carried out in Japan. Thank you.
Please add Acupuncture combined with laser therapy ! I started a month ago this therapy in Canada and I'm already feeling better after a year of long covid symptoms and not feeling like myself. Doctors here don't know what to do really. So if we want to try to get better, we need to look outside the box like you said. Hope it helps someone out there. Love your work by the way!
Thanks Roxane!
Láser therapy? Tell me more? And accupuncture?
I’ve also been doing acupuncture and gigalaser treatment twice a week for a few weeks but I get worse before I get better after each treatment so other than the odd good day, I spend most of my time feeling worse 😅 It makes pacing even harder so I dont know if it’s worth it.
I’d love to see acupuncture as a topic though! It really helped me out of my second relapse but no luck yet in my 3rd relapse (which is worse and a bit different this time).
@hoby56 I'm sorry it has not been working for you and I deeply hope you find something that will. I never thought that it would work for me, I heard some don't get results and others start feeling better with this therapy, but I'm no expert. It's a try and error thing at this stage. ❤
@@lisagonzalez3861 It's traditional chinese acupuncture + laser therapy (can't tell exactly what is the machine, but it uses pads and pointers) Treatments are in the hands of the expert evaluating your medical condition.
Thank you.
Thank you gev
Gez just want to thank you for all your help in getting our voices heard.
So you’re next film is going to be about “alternative therapies” one of them being Stellate ganglion block, I mentioned this to my neurologist and she suggested I have medical anxiety for doing my own research when I’d seen this is being trialed abroad, I only wanted her opinion.
Could you also look into vagus nerve stimulation at the same time as there’s huge trials world wide for this with positive results, and lots of long haulers have been joining a group on Facebook, this lady has a wealth of information and even drs are sign posting people in her direction.
Thank you again 🙏
What a strange reaction from your neurologist! Vagus nerve stimulation can be very helpful for those really struggling with dysautonomic symptoms. It’s a management strategy really though.
Thank you Gez!! This is awesome. Out of the box therapies are very interesting, could you please cover fasting? It seems to be helping me and I read other testimonies about almost full recovery.
Regarding the therapies in general, but would it be possible to get any sense of what would work best in each case? I may be asking the impossible here, but to give you an example: Cold water makes me feel much better, however I started getting cold greyish color feet, so I had to stop them. I have no way to test if I have microclots or not and I most likely have MCAS so Im not daring to touch the nattokinase. I don’t know if the color of my feet is due to the cold water or maybe pots, so I stopped but in reality idk if I really needed to. It all becomes really messy as you probably already know. If there could be a way to tell somehow, what is the right path to go, that would be so much help.
Really curious. Why are you not “daring” to take the Nattokinase? I’ve been successfully taking it for 22 years to prevent blood clots after my open heart surgery because I am allergic to all of the commercial and pharmaceutical blood clot prevention drugs.
Hoping you're well, Gez. I'm thinking of you.
I have CFS for 20 years. No help what so ever form NHS in country where I live. I kept saying "its like I have the Flu, but it's every single day" nOw loads stiff coming out abt 'post viral fatigue' and LC...I felt like that because that was what it was like. I don't feel like that now, but I am pretty bed bound between basic funx of life within the house. I don't feel like I have the Flu, but my activity level is miniscule and PEM symptoms are bad, even going out to do some basic gardening. It is juts crazy. YT channels like this ARE HELPING,. TY !!!
THANK YOU SOOO MUCH!!!
thanks Gez great as always. there was some news this week about a potential blood test, looking at cortisol levels. Any chance you'll be able to interview any of these folks working on this potential breakthrough for a LC test. Look forward to your next out of the box films as Im just completing 20 hbot sessions. Keep up the good work.
Hope the HBOT helps!
Thanks, it's not a cure but has given me some relief from the fatigue. Just wish it would last.
Great series Gez - thanks! In future I would really like you to investigate a link between microbiome dysbiosis and LC - and whether working to rebalance the gut can help LC with particular focus on autoimmunity which is often associated with the microbiome. Thanks!
I have covered the microbiome angle before - but I’m sure there’s more to say.
ua-cam.com/video/ZDwY8QFvPRo/v-deo.htmlsi=LaSSx8qissOJno8h
Hi Gez! It will take a looooooooong time to the LC community to get any sort of treatment to help with the symptoms. Meanwhile our bodies are deteriorating in an unexpected way. I was wondering if this will shorten our life expectations. For me it makes sense. Not that I’m being negative. It just looks like it is a possibility. I have aged so much the last 3 years that I can’t imagine myself at 80 years old.
But heads up everyone, we have a mission and a purpose in this life! 🥰
Be hopeful and stay positive
hope that treatment come SOON!!
Yeah the progressiveness of the deterioration both physically amd cognitivally is scary AF. I'm 38, feels like 75
Doing raw till 4 gave me so much energy. I feel 20 years younger. 🍇🍉🍊🍍
@@stephangauthier911 and no one is talking about it. I think it’s a possibility that we all have to be aware of. Being afraid to talk about it doesn’t help anyone. Hugs!❤️
Thank you once again Gez for all your research and wonderful guest soeakers / professionals . I'm actually back in bed having caught the covid virus once again - the virus that just keeps on giving 🤧 and giving 🤧🙏
So sorry to hear that Dee :(
@@RUNDMC1 Thank you Gez - At least this time around we know the score 👍
Would you Please do a video on Red Light Therpy and near infrared light?
My wife tried it and had a crash from it (she thinks). Would be interested in getting other experiences.
We invested in one for our daughter 15yrs (almost 3 years with symptoms)
This was on the advice of Dr Tamsin Lewis interviewed by Gez. (Unfortunately her fees have now doubled since first consultation)
The protcol she gave my daughter was, I believe is what got her out of bed and mobile again and I would recommend Dr Tam if you can afford her
Anyway, daughter wouldnt use the red light so my husband and I decided to use it, he was difficult to convince but I can tell you he no longer suffers with back ache, I am not experiencing Raynauds in my finger tips as often and we both agree that it has improved our sex drive.
I will add, I cannot take this therepy in the evening nor after a meal , maybe it dehydrates, not sure, but drink lots before and after
Thank you for your contributions to the Long Covid community. We need hope for therapies out there which might work. Can you present results from Stem Cell Therapy for treating Long Covid?
Thanks so much! Not sure if you ever covered this, but maybe you might once talk about rehabilitation and its possible harms for patients?
If we’re talking about GET - yes, covered it!
Btw.. Dr Patterson did a show last night with Dr been about NEW therapies AND TESTING IS COVERED UNDER INSURANCE NOW... see last night's show. The last 50 minutes is the most informative but all of it good
Hey @RUNDMC1 - absolutely loving your vids slowly making my way through them - just wondering if you are still planning on doing this "outside box" series you refer to at the end of this episode. would absolutely love to see what you come up with. Cheers, Ben
P.S. I was also training for a mara when I got covid (symptoms also mild) and also returned to training after iso finished and also felt like shit after getting back into it. And had post-viral CMV (think yours was EBV) fatigue 5 years earlier for a period of 18ish months!
Hi Ben. I’m taking a break from YT whilst I prioritise my health and a couple of other projects. Will be coming back to it in due course. Glad you’re finding the content helpful!
@@RUNDMC1 no worries at all. we can't help others unless we help ourselves first. take care and look after yourself!
Great videos, thanks, Gez!
Methylene Blue sounds somewhat promising. I´m considering to give it a try, additionally to LDN, which improves my symptoms (2years) for 15%.
Hi Gez, as always thank you for your time and energy and for all that you do for the long covid community!
I have been seeing some patient led trials for nicotine patches, I believe the idea is that it potentially dislodges the spike protein from the ace 2 receptors, is this something you have come across? Also I wondered if you knew much about the augmented NAC that Dr Tina Peers has mentioned in a few interviews. Thanks.
Nicotine patches are interesting but I think it’s a metabolic bump, not sure how much evidence we’ve got that it does anything with spike
@@RUNDMC1 www.ncbi.nlm.nih.gov/pmc/articles/PMC9845100/
Can you bring in Dr Tam? She looks like she has recovered
Consider discussing Pentoxifylline as an option. I’ve had good success with my patients on this and avoiding expensive eliquis. It has more moa than eliquis to fight LC.
Hi Gez, thank you for your videos. They are always insightful. Long Covid in my life is something I have to deal with for a long time. I am disappointed in the lack of knowledge, treatments and help from the (Dutch) system. However, unguided treatments may also be of a risk, especially in the fragile state you’re in when heavily suffering from Long Covid. I am therefore very interested in your next series and since you asked, I may have some suggestions of subjects that could be of interest to cover (next to the interesting subjects you mentioned such as oxygen therapy). Maybe you can give opinions / insight on:
- Aspirin
- Nattokinase supplements
- Cortisol medication
- Creatine supplements
- SSRI (selective serotonin reuptake inhibitor) medication
Thanks in advance!
Thank you!
Hoi ik kom ook uit Nederland, neem jij iets voor de long covid klachten, en brengt het iets verlichting?
When can we expect this in UK? -what about treatment phase 3 trial was March 2023 according to this taken from ME/CFS site: in October 2022, AIM announced that the FDA had given approval to “proceed to initiate a Phase 2 study evaluating its investigational drug, Ampligen, as a therapeutic for patients with post-COVID conditions.” Thomas K. Equels, MS JD, Chief Executive Officer of AIM went on to say:
“We are very pleased to be able to proceed with our Phase 2 study and are prepared to advance Ampligen as a potential therapeutic for the treatment of myalgic encephalomyelitis/chronic fatigue (ME/CFS)-like post-COVID conditions, an exploding area of significant unmet medical need,
“Post-COVID-19 Disabling Fatigue, along with other debilitating post-COVID conditions such as ‘Brain Fog’, continue to affect tens of millions of people worldwide…
“…we believe Ampligen has the potential to be an effective treatment option and an important solution for patients and physicians… We expect to commence enrollment in early 2023.”
It’s good they are looking at the viral persistence and micro glial activation. I don’t think Paxlovid is the answer, but I think the monoclonal antibodies sounds very promising and know people that said it was a miracle. I did IVIG, plasma exchange, steroids, and every supplement under the sun and nothing worked. I did 5 days of Molnupiravir and was able to stand, the pressure in my head was almost gone, I had enough breath to sing, my cognition came back online, and then all my symptoms returned within an hour. After every thing I tried, molnupiravir, the other covid antiviral, gave me the most relief, but it was short lived. Not Paxlovid. I say that more trials of the monoclonal antibodies should be tried. Most of us don’t have natural antibodies and with the dramatic response to Molnupiravir 2 years after getting sick, there seems to be viral persistence.
I know a lot of people who had success hitting a vaccine round and others with the opposite effect. But some people it cured completely. Definitely viral persistent and when they got a second or third round of vaccine it must have kicked in enough to get the rest out. I'm still scared to do that route but I don't know I had a couple people say it was a miracle for them the last little bit.
Would this filter down to chronic lyme and ME/ CFS?
I would love to see talk of unofficial antivirals. I am using occasionally valtrex with some relief. I also believe long covid and SIBO could go hand in hand, and some of us could benefit from antibiotics specifically to target SIBO. Hope a new vid is coming soon, thank you!
Taking some time out to focus on my health! In terms of unofficial antivirals - some of the groups are talking about Cycloferon at the moment.
Hi! Thanks for your videos. As an idea for your next series: could you also cover the use of SSRIs / other mental health drugs for long covid? Fluvoxamine, fluoxetine (Prozac), vortioxetine, naltrexone, etc
Stay away from SSRIs, they will cause you more problems than they are worth in the long run.
Hi Gez have you seen the study that found people who are hypermobile (and therefore more likely neurodivergent) were found to be more prone to long Covid?
BMJ paper with an article this week in Guardian.
How about rapamycin? My practitioner who has m.e. almost 20 years suggested it and she is on it herself as well. I definitely have noticed big differences in just a few weeks going from mostly bed bound to making my own simple meals, washing my own hair, and taking 4 minute walks outside the house. I'm sure I can do more, but being very careful! By the way I am doing once a week dosing and I am only on 4 mg at this time.
I have found that there is a real connection between symptoms of neck problems that mirror all your long covid symptoms
Thank again for your videos Gez!
Have you come across transcutaneous VNS (vagus nerve stimulation)? You can use a TENS machine with an ear probe or buy one of the extortionately priced devices being marketed towards LC patients (e.g. Nurosym). They’re claiming significant symptom improvement but their study is tiny and short.
I heard about this trial so I did some research myself and bought a devise.
I’m going very low and slow as like most long haulers my body over reacts to most things, but I am feeling some benefits, definitely worth a try and from what I’m learning it’s all about the parasympathetic and sympathetic nervous symptoms.
Heard about it, not tried it. Might help some people considerably but so does breathwork and meditation…!
Gez thanks so much for getting Akiko on, maybe I missed it, but what was her take on microclots (Pretorius work). My guess is she is gunning for the underlying cause of the microclots, but maybe they are just left over from the Acute covid.
Yes she acknowledges the microclots - sees it as a consequence of one or more of the 4 potential causes
For me it is a question of are the microclots being continuously produced from an underlying cause or are they simply left over from the original infection. I may be able answer that question from experience. I recently had a test (Vaughn) and I am loaded with them. I will be trying the triple therapy to see if they can be broken up and if so do they come back after the drugs are gone? I have had LC 3+ years so hopefully they can be broken up.
Thanks for all your efforts, we are all grateful for the help in sorting this out. The fact that you can get interviews from world renowned researchers means you are making an impact. @@RUNDMC1
Suggestions for your treatment series: BC007, Maraviroc, Truvada, Ozone, Immunoadsorption
Inverse Vaccine by Jeffery Hubbell and researchers in Illinois
I don't think Ozone is really very effective to be honest I tried it a lot and it just doesn't do what it says on the tin
BC007 and other anti-autoimmune topics is most promising
Antivirals are so so, they help some a little.
Follow up with some triple anticoagulant patients would be cool.
I’ve already spoken to Dr P on the channel about Maraviroc if you’re interested
I was very sick for 2 1/2 years and a dozen doctors could not give me a diagnosis. So with some help from the internet I stumbled upon some information that led me to long covid. A lot of doctors don't realize that you can't diagnose long covid with lab tests. I had over 50 lab tests. So I got some treatment for long covid online from a world class cardiologist and in less that 2 weeks my symptoms were reduced by 80 % ! I continue to improve every week. I still can't believe it.
Would you mind sharing what the treatment was? - most appreciated..
Paxlovid is intended for use 5 days after initial infection and is claimed to be ineffective beyond that time period in people with active COVID. How it is supposed to work on people who have potentially had persistent infection for 3+ years when it doesn't work past 5 days?
The course they’re using is 15 days
This may be idiosyncratic but my daughter (early 30's) has sever long Covid and is bedbound since November 2023. She has found that a low dose of Lorazepam (0.5mg) gives releief for a few hours and seems to reduce the impact of overstimulation. Useful for virtual appointments - it does nto see ot lead to impact like crashes from doing more and is only used a coupke of times a week either for appoinmtment or to get relief from unbearable neuro symptoms??
July 2022 infected and thereafter diagnosed Long Covid19 Syndrome. Still impacted. Life changing in so many aspects. Frustration an understatement. So many varied medical opinions. So much prejudice out there from people who do not understand or do not wish to understand or do not want to know about this disease.
Gez -- please, I just wanted to get your opinion about this "Nicotine Patch" thing that many people are talking about recently. They claim it's an amazing cure. I'm afraid to try it. Do you have any thoughts on it?? (thank you!)
Has there been any research into psilocybin treatment? I've been taking micro-doses (not enough to cause visual hallucinations) and was surprised at how much it helped with brain fog and has made my heart palpitations nearly completely disappear (I still get them very very occasionally but for the first 4-6 weeks my palpitations disappeared entirely)
I think some proper medical research on psilocybin would be very beneficial, as I was very surprised at how much they helped
No specific research into ps and LC that I’m aware of, but plenty of anecdotal interesting stories
Hi Gez, Hope you're okay and seeing some benefit from focusing on recovery?. Many of us are coming up to the 4 years since covid and now Long Covid. Do you have any appetite to re-do the survey on us first wavers that you used to regularly do ? Or would that be too much effort and likely disheartening. Just thoughts I'd ask. Really hope that you are doing ok.
Great work as always Gez! I’d like to see a talk on BC 007. Maybe one day you could also interview Dr Mark Hyman who is a well know functional medicine doctor. He talks a lot about Ozone therapy as well. Cheers!
Thanks! I want to talk about treatments which ARE available, so BC007 would be it’s own thing 👍
Dear Gez, would be interesting to hear your thoughts about HELP Apherese. I myself suffer heavily from LC since a year and the Apherese helped me a lot, got rid of the worst fatigue (immediately I was able to have a conversation again and go for walks, which was impossible prior). However, there's no evidence for this treatment and it's rather expensive, but the anecdotal/rumors for it to be a part of the solution are definitely there. A Cochrane article says basically there's no evidence for it to be useful. However, there's also been no study to test the hypothesis (which is a shame, considering it could be relief especially for strong affected people).
Big subject! Anecdotally most improve in the short term but slip back to baseline in the medium term
@gez, thanks for your tireless work in the LC field! 🙌🙌
Have you covered the Nicotine patch therapy? It sounds very promising but I haven't found any long term research data yet!
There is no data out there like that, that’s why! Anecdotal reports it helps a bit - it’s cheap to try and low risk. Start off with the smallest patches and cut them in half. Work up till they’re about the size of your thumbnail. And take a week off for every week you take them to avoid addiction!
@@RUNDMC1 Thanks for confirming, I'll give it a go!
covid itself causes multi organ damage, it should be quite safe to assume that a lot of symptoms of long covid would be due to tissue/nerve/vessel scarring over time, which doesn't really go away, in cases the scarred tissue can be remodeled to resemble normal but if its multi organ, heart, lungs, kidneys, the likely hood that you are going to have multiple surgeries to remodel the tissue without a guarantee fix is very slim, there isn't one long covid patient that has returned to their normal base line of health.
Thank for the content! Can you do a video discussing why some people recover and others dont. I am basically at 100% or better after being basically disabled for almost a year. Why others are not getting better?
$64,000 question. But we do see a lot of people recover at around the year mark. If you don’t recover by then, chances are you’ll still be suffering at 3 years +
@@RUNDMC1 Thanks for your reply!🙏 I agree that is a hard question but I would love to hear a conversation and even maybe research about possible drivers (genetics, lifestyle, access to healthcare, specific treatments followed by those who recover etc.) I am in contact with a few still suffering and it breaks my heart. I would like to help somehow. Thanks for sharing this info with world!
@@vannelysrivera8358I did try to collect some data on this but the problem is that there are an infinite number of confounders - the only conclusions you could draw were that resting and pacing were the most commonly shared traits amongst those who recovered. The problem is the majority of those who haven’t recovered are doing that too!
Hi Gez. Thanks a lot for your work with long Covid I appreciate it so much. Have you heard anything about the drug Meldonium? My Russian brother inlaw says that it is prescribed to long Covid patients there and he has in fact sent me some. I have taken it on and off to help me through bad patches and I think it has helped with symptoms. I don’t really like taking it though as there is not a great deal of information about it. Would be great to hear some professional opinions. Thanks again
I’ve not heard anything about it - sorry!
I was just looking into Leech therapy!!! Can't wait
Nice!
Thanks Gez would also like to see LDN pros and cons. Ozone therapy. Have you tried any of the clotting therapies personally like enzymes or triple therapy? Thanks
Yep tried both! Didn’t seem to be a big part of my personal puzzle
Hi Gez and thanks a lot for all your work regarding long Covid. I get Meldonium from my Russian brother in law. Apparently this is the standard drug they use to treat long Covid in Russia. I have taken it on and off to help me get through some bad times and it does seem to help. I don’t really like taking it though as I have no idea what it is really doing or what are the long term effects are. Would be great to hear if there are any expert opinions on this drug. Thanks again
Hi Gez thanks for all your work. I am testing dry fasting & nicotine patches as they anecdotally work for some. Maybe good to investigate these further? Fasting helped me a lot, was normal for about 6 months and now relapsed with a new infection. Trying nicotine patches this time
Nicotine patches can give a boost but seems to be temporary
@@RUNDMC1 Yeah tried it myself and was feeling better during (logic because it's a stimulant) but after baseline was not better. Could use it when I want more energy to take care of my kids.
Have you or anyone else checked into Tension Myoneural Syndrome aka TMS? (the work of Nicole Sachs) She claim that LC is all in the nervous system and based on fear.
May be antidot of Covid19 and of long Covid are normal capacity of thermogenesis?
Did we know what can weakened thermogenesis?
try thyroxine T4/T3 and B12.
Hola Gez, hope you’re doing well. Any updates on whether people are getting the covid booster this autumn and if so how are they reacting? Do we know how people are getting on if they get infected with covid again and haven’t had the booster this autumn? I’m coming at it as someone who got very sick (or sick-er should I say) after Pfizer. Thanks 😊
I don’t know any long haulers who are getting it this time round - and there’s very little data to be had on it as a result. The risk / reward balance has shifted somewhat now that the current vaccines don’t prevent infection (just potentially mitigate acute severity)
Hmm interesting. How curious that long coviders aren’t clamouring for another vaccine…! Thank you for replying!
Hi Gez. Another great video! Also you are right in terms of us long haulers having to wait for studies to be proven so hospitals will adopt treatments. That's exactly what my primary care physician told me yesterday. There aren't any studies out there of validity and volume, to give us a treatment for long covid. I was trying quite a few supplements, but they're not really doing me any good at all, so I'm going to go back and stick with the basics in terms of supplementation... Many people out there including myself, are very depressed over this situation... Godspeed, I hope for a cure to this horrible virus...
Totally with you Jimmy
It seems across the board we were all told by doctors that we had nothing more than anxiety. In the last month when my headache feels like it will burst my temples I take one dose of lorasapam at bedtime and wake up perfect without the usually dull ache, dizziness and tinnitus. I wouldn't take this daily, but do you they should check into something like this for our head pain and neurological issues?
My doctor said it’s all psychosomatic. Right. My head aches are caused by fluctuating blood pressure. Since having LC my bp has been low most of the time but will suddenly hit 175/80 during ovulation. You should monitor your bp.
Can a course of Paxlovid help even many months of suffering from long covid?
Hi Gez, it would be great if you could do a video on the recent study that came out of America where they cured 3 Long Covid patients with monoclonal antibodies... I know it's only 3 but the study was done 2 years ago and has only just been released. Considering the patients suffered no side effects and all claimed to lose their symptoms and return instantly to their old selves after 6 days is surely worth a video talking about.... as mono antibodies were used to treat patients with covid in the first place surely using this as a treatment for long haulers is a no brainer..... we need answers on this....
I was very struck by the session you did a while ago with the Amercian medic specialising in sportspeople. He mentioned the issue of the PAI-1 g4/g5 genetic status of a great many people (48% of the population?) who are less affective at turning plasminogen to plasmin for breaking down clots. If people are trying anticoagulation therapy but are g4/g5 they may not be so good at microclot breakdown. Are you aware of anyone pursuing this?
Will we be able to reverse COVID tinnitus?
Cervical instability and long covid symptoms
Which nonprofit do you think is worth a donation?
Eboo treatment works well for long covid....