How Should Doctors Treat Long Covid? | With Dr Wes Ely
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- Опубликовано: 18 май 2024
- In this second of two films with Dr Wes Ely, Dr Asad Khan and I ask him about how he’s treating Long Covid patients at the moment, what his wish list would be for treatment trials, and the complex relationship with ME/CFS.
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If they had taken ME patients serious from the get-go, much more would have been known by now and Long Covid could have been avoided, or at least be treatable.
Agreed!
And in the future, we will be saying, if they had taken autoimmune patients seriously, from the get-go, lots of long covid could have been avoided too. We haven't got there yet, but we are getting nearer.
We should have a hall of shame with all the decision makers who failed ME/CFS patients throughout the decades, leaving them with irreparable harm. I can think of various names who still seem to be influential till this very day.
@@matfax whole wessely school belongs in jail
@@matfaxwe should have Nuremberg trials
As an ME patient, it feels so good to be validated. Thank you all, for your willingness to engage, listen and learn. And teach!
If that’s al that comes from this then I’m glad my long covid suffering helped you guys 😊
I can't say I'm glad. So much suffering could have been prevented if the professionals had just listened to patients and taken them seriously. We might have proper treatments.
As someone who has completely healed from LC with a severe neuro component(couldn't even tell you my name for a while) and POTS I am SO grateful for the ME community bc that was the rabbit trail that led to my healing!@@AJansenNL
❤
Wow, this surely made me tear up...8 years with ME, post sepsis...I've been in that black hole of despair, crawling my way out, and also so incredibly angry for the lack of understanding in the medical community. I'm just dumbfounded that doctors can be so ignorant, truly! This doctor gives me so much hope though, and his humility heals❤
Have you looked into Airnergy? Some with ME benefit from it
I’m Almost 3 yrs in with my LC. I’ve literally stopped seeing doctors because of the gaslighting. 🥺 Thank you so much for this refreshing video. I wish, Hope & pray that more and more doctors will learn and understand what you did. THANK YOU! ❤️
Functional medicine doctor and a homeopathic natural medicine doctor in our ballistic doctors are the only doctors that can possibly help a regular primary care physician cannot do anything they won't do nothing
Look at my case I got covid in the spring of 2017 and they had no idea what was causing my condition they thought that I needed a psychological evaluation but they couldn't figure out what was physiologically wrong with me
I do not fit inside the protocol. The blood work and the symptoms mimic multiple myeloma and I went through the whole gamut the bone marrow extraction and everything all the pet scans all the monitoring do you have mgus
Traditional Western medicine cannot solve anything I'm in the long SARS covid-19 protocol program and they're not doing anything what they want to start is a psychoanalysis by putting the scanner things on your head
My father was a medicine Medical formulator Eli Lilly and Company he worked there for 42 years 25 years in the top laboratory he was the highest-ranking non PhD MD lab technician and the company
I want to send a personal thank you to all of the doctors working to find a cure for these health issues. Please know that there are many people appreciative of your work!!
That helps to know
I was vaccine injured in July of 2021 after one shot of Pfizer. I am better than I was but still struggling to try and recover. The symptoms are identical to what is discussed here. I have had blood clots (still on thinners), dysautonomia, neurological issues, vision issues, vestibular issues, small fiber neuropathy, Autoimmune issues etc. Luckily I have doctors trying to help, but both vaccine injured and LC need to be more widely acknowledged.
Agree. Many are just as ill from this as those who got LC from infection. Acknowledging this is not the same as being anti vax. It really has happened to some people, perhaps because of their genetics or pre-existing conditions. Please, it really needs addressing.
Unfortunately there are some pretty serious political/ideological barriers to being able to see that it's the same thing but most people with half a brain in the long covid community (I have LC) are well aware of this. I have been seeing you guys right there next to the rest of us for two years.
Hi, what has helped you? I have visual issues, brain fog, tiredness ,palpitations, shaky legs and arms so must be some type of neuropathy. Could you tell me what has helped.?? Thank you
I am on Low Dose Naltrexone, Plavix, H1 and H2 histamine blockers (and a low histamine diet) for MCAS issues, and recently started nicotine therapy for brain fog. 7 mg nicotine patches that is actually helping. I think time is the biggest factor but trying some of these meds might help you.
@@lisagonzalez3861
I'm so sorry this happened to you! I had Long Covid before I got my first vaccine shot and for me the vaccine shot & boosters has improved my Long Covid greatly. All my shots have been Pfizer so far. My Long Covid seems to get better with each covid shot/booster that I get. I also take a ton of supplements each day too.
I really wish we had a biomarker for ME/CFS. I was diagnosed with lyme-disease after two years of ongoing symptoms. I had a positive lyme test. Believe me, I carry that positive test paper to every doctor I see because you can not deny the positive test.
I got no conclusive medical test and I still live in constant pain. That's blowing my mind. At least you got an answer, an avenue to concentrate into. (Im denying in no way your pain).
Tu fir this.. I am autoimmune, celiac, gut dxsbiosis, COPD, mold injury, long Lyme, long c.. my PCP told me he doesn't believe in long lyme.😢.. has anything helped u w the Lyme? I had the ana test..+ 5 out of io titers were neg, so they wrote neg, but my overall titles are 81, + anything above 8 is active, blessings 2 All of us 🙏❤️
Unfortunately Armin labs in Germany or Igenex in the USA are expensive tests. My Lyme Dr said the standard tests (Elispot) is 30-50 % accurate. He makes a clinical diagnosis himself. Another Doc said the governments will not admit tickborne infections are on the rise or invest in Diagnostics...same as for mould/mycotoxins are an issue. Imagine the money they would need to treat ME/Fibromyalgia patients.....
@@brendabrenner2891 No answer, just want to acknowledge what you’re going through. I’m autoimmune now in addition to a bunch of other stuff, don’t even know the deep ANA testing you’re talking about because no one has suggested it. But I’m also immune compromised and don’t meet the exact parameters for an immune deficiency disorder that I know of yet. Just get sick *every* time I’m even mildly exposed to a respiratory virus and need to mostly isolate to function independently. What’s crazy is that I now have a recurring bullous pemphigoid rash, plain as day, and Vanderbilt dermatology misdiagnosed me with chigger bites because many in the field of dermatology in the US mistakes one for the other. My rash looks exactly like the first picture of BP in the Merck Manual! Even with the inconclusive biopsies only pointing to BP I’ve been misdiagnosed because “poor baby, it’s all in your head, you’re just sleeping with bugs”…. LOL I’m laughing because I’ve lost it way too many times to count, but seriously, it’s insane out here (meaning in the real world of ME/CFS) with the more advanced ME “post COVID add on” syndromes. Wishing you the best!
@brendabrenner2891 I would say a clean diet has helped. Also getting vitamin levels up to where they should be. I have been on 29 to 30 antibiotics. I still suffer from chronic fatigue. Ignorance is in abundance when talking about long term symptoms when dealing with lyme.
A doctor with humility what a guy! There’s some hope
I have tears welling up in my eyes listening to you speak to what has plagued me since the summer of 2020. When will any treatment plans be affordable and accessible for someone in the low income bracket like me? 😢
Hi Trisha, There are inexpensive treatments for Long COVID and CFS/ME accessible to you now, that involve Lifestyle Changes, such as Chronic Stress reduction through Meditation, Breathwork, Pacing, improving Sleep Habits, light Yoga, following a Low Inflammatory, Low Carb, Whole Foods Ketogenic Diet with Intermittent Fasting, Supplementation to Optimize your Immune System, etc. that have helped people to recover or improve their condition.
Discussions of some of these Lifestyle Changes are available in other videos on this channel. LifeWithKyle, JUST ROB, and Raelan Agle provide others.
Personally, I believe Long COVID, CFS/ME, Chronic Lyme Disease, Fibromyalgia, MCAS, and POTS are an end result of Chronic Stress that causes chronic dysfunction of the Immune System. The elimination of Chronic Stress must be addressed by Lifestyle Changes rather than pharmaceuticals.
I wish you success on your journey to Recovery!
Message at the end to us long haulers instantly made me cry. Wish I had a doctor like him. While it is no treatment, just feeling heard, and validated - hearing a doctor say he wants to learn from his patient, filled me with so many great emotions for a change. Also, I could say many things about the way so many people across the globe have been forgotten way before Covid, I’m just glad that Long Covid is really bringing it to the forefront so there is finally some hope for them too. Thank you for this video.
I agree Mindy!
Amen 🙏🏼 agreed 👍
The ME community have been struggling with this for decades, long covid patients have NO IDEA. They've just arrived lmao.
@@lmnts556 pretty much what I said
@@lmnts556amen! I feel terrible about thinking this way, but in my opinion, ME patients should be at the front of the line. I see long COVID patients talking about how long they've suffered, meanwhile there have been people with ME for decades! My entire young adulthood was stripped from me, now 10 years in. And, I know compared to many, I've had it almost no time.
Until now ME/CFS has been a permanent disability with no hope! When the world was agonizing over C*VID death rates and folks were arguing about masks, restrictions, etc., I noted in comments that the real tragedy would be the 30% + who would never fully recover. (The 30% number was suggested earlier, dropped to something like 10% and recently has been raised back to around 30%.) Unless medical research finds some cures, a lot of suffering people will have damaged lives until they are released by death!
I see long covid symptoms appear similar to other long term conditions. One conditions is aging. Treatments for long covid are similar to strategies for extending life spans. Intermittent fasting and structured water consumption help my long haul symptoms. This also extends lifespans.
I just got a fibromyalgia diagnosis which is permanent I think. There was also a study in Spain this week that said the majority of LC patients (covered in nature and la vanguardia) still ill after 2 years, thats been my experience...
There is a new study I have not yet read, about mouse antibodies driving fibromyalgia pain. I think it means they studied the mechanisms of the disease in mice. There is hope if researchers will stay on track and if doctors and the profession as a whole DROP the garbage about these chronic conditions being psychological! While a few troubled individuals might fake illness, the overwhelming majority of chronically ill people are physiologically damaged. I wish you the best.@@sofikat22
Yes, a disability that's hardly recognized by our own disability system.
Here in the U.S. it has not been a recognized condition. I am extremely angry and bitter by how our doctors have dismissed severe suffering as mental. I think there is a dangerous streak of something akin to Christian Science in our medical system. I don't mean a religious perspective but the idea that chronic, undiagnosable ailments have to be dealt with, mind over matter as they used to say. Maybe there is also a remnant of pioneer days, too. When people had to "pull themselves up by their bootstraps" and no excuses for not thinking yourself well, or at minimum, continuing to be productive, no matter the misery involved.
Europe was smart enough to throw out Freud but the U.S. loved him and that kind of psychobabble further harmed our medical system. People cannot think themselves well! Attitude can help a person cope with chronic, physical illnesses and some illnesses will go away with time. But no amount of thinking will cure anyone with physiological illness or disorders!
The U.S. is not as socialized as are many developed nations. Medical care and disability are less defined in this country than they may be in other nations. My friend got one of the terrible mystery viruses years ago, long before C*VID. She never fully recovered and did not get help from the medical profession. She had pain and fatigue and doctors told her she was mental, and to pull herself together and think herself well. She got some relief from alcohol and little by little, year by year she consumed more and more alcohol. A number of years later she wasn't thinking too clear and her personality was squirrely. At that point doctors helped her get disability for mental issues.
That is tragic, that doctors so neglect and belittle suffering people, that those sufferers turn to alcohol until they really do qualify for disability under mental illness qualifications! So much needs to be cleaned up in the medical profession! A starting point is to treat all illness as PHYSICAL and DUMP the idea of suffering people thinking themselves well! That is the height of cruelty!@@MackLee23
The world needs more doctors like Wes Ely, amazing guy! Thanks for giving us in the long Covid community hope ..
My goodness, I just started full body weeping when the doctor said not to give up. Its so hard not to want to be unalive. My life is gone.
I completely understand and feel the same. Sending love and kindness.
Search for the little things you can do.. best to you from the Netherlands
I feel the same. Despair, discouragement, depression, dejection, death...the damned D list goes on and on. HOPE is precious.
3 years in we have more people working on long covid reasearch, but for now we haven't seen any big breaktrough.
Too bad the “medical” industry can’t figure out that this entity has thousands of patents, that the entire clade is man made, and the disturbing microbiology truth needs to be addressed by the cut & drug puppets, led by the nose, by finance controlled entities that patented this and took over medical and science to be “for-profit”.
Yeahhh, today I will do the dishes and dinner and maby check on my plants....😅😊 But I would love to vaccum, put things away, go out, sit on the balcony, put my clothes in the closet, clean the floors and take a shower 🚿😢 well there's a new day tomorrow....😊
Yeah no energy for all the chores😢
Right there with you almost 2 years
There is a pattern I have found, and finally convinced a doctor to take seriously. When I am taking helpful supplements I feel better, when I am not taking them I feel worse. All of the supplements are 1) anti-inflammatory 2) anti clotting 3) blood vessel dilator. What if we do some proper A/B testing.
I take everything that is effective, and do blood tests for auto/immune markers, and blood flow, possibly cognitive test. Then I stop everything for 2 weeks, and do the same tests again.
We ignore the "normal" range on the blood test database and see what actually changes. I think most of us now realize that "normal" means not dead or about to die.
Ru going to do same.. studying all from ginko, choline, nac, natto, berberine, etc.. what r u using.. don't want them stacked, want to see reaction after each🙏❤️
Me too, I take so many supplements a day, which I feel prop me up, but still not healing long term because if I discontinue I can't move. It's so expensive.
@@brendabrenner2891 Asking for full bloodwork between each would be pushing my luck too far. It took me 3.5 years to get them to agree to this. However, if we can see a change in some markers I can hopefully narrow down what is actually needed.
My list:
Meds: IVM, betablocker, Benadryl, naproxen, Tylenol.
other: Niacin, Ashwagandha, D3, K2, E, Magnesium, C, Inflammatrix (curcumin & berberine), NAC, B100, ginko.
stopped taking
Natto/lumbro/serro interacted poorly with IVM
fluvoxamine: I can't take it with betablockers, or natto increases tinnitus.
Asprin: I needed way to much to see a change.
monolaurin: very helpful for 3 months, then stopped being helpful.
" 'Normal' means not dead or about to die"--exactly. (An emergency doctor, eager to be done with me, said, "You're not dying.") My bet is that the "normal" range on blood tests has the bar set pretty darn low.
Thank you SO much for this interview with Dr Ely. I am suffering from long Covid with chronic inner ear inflammation. This causes a host of issues. Steroids helped immensely! Made me feel normal. But it’s not a long term plan. I’m searching for a solution. I’m grateful for Dr Ely’s passionate focus. It’s so needed.
Thank you!!! At last ME/CFS is being recognised as something REAL and horrible. You have no idea how much it means to me.
Dose anyone else grow tired of getting some improvement form a treatment, having the doctor be all prideful, then three or four months later be back where you started and the doctor doesn't believe you?
You’re not the only one Craig!
It is as though your immune system, stops doing the stupid stuff that causes the problems, while it makes all the appropriate adjustments because of the effects of the medication, and then goes back to doing the stupid stuff.
Wish every Dr / politician could recite that type of acknowledgment & apology 😍😍
Thankyou dr Wes, that’s the best message I’ve heard from any dr in 2.5 years, doesn’t solve any of it, but a promise to listen, apply some science, be interested & learn to help otherwise will over time pay dividends
That last message for us long haulers made me cry. You validated us in a way I never been validated yet with 2 years of dr visits, ER Visits and specialist. I’m sure I’m not the only one in comment section that’s has cried after every dr visit and been told god awful things. I’m a strong mom and wife and this isn’t easy to not be able to take care of your family not let alone trying to keep a job. I’m grateful to know at least one doctor is out there fighting and wanting to understand. I needed to this video more then you know and extremely jealous of your patients! I thank you from the bottom of my heart for this short video that gave me a little hope.
Acute covid June 2020
Medically retired
Microclots found in my blood
Triple anticoagulant Tx March 2023
No matter what treatment and how effective… the long and short of it … is that conserving your energy output by pacing yourself and allowing your batteries to build up and maintain reserves is quintessential to any recovery
It is a really a mindset shift and very difficult for me when my default setting is loud busy and in your face.
Still crashing 3 years into long covid. Slow learner 😵💫
you‘re not alone - another slow learner here 🙋🏻♀️ (10 months in)… pacing is like mental torture to me 😆
Me too, 3 years. Finally got diagnosed with OH and widespread dysautonomia, now suddenly lost hearing and symptoms ramping up quickly. Crazy. So many symptoms and so many doctors telling me it's in my head..now I have every single symptom of Sjogrens plus and my neurologist isn't taking me seriously and I'm in constant pain and ill
@@aprilgarnett55You probably had the latest round of Covid again, perhaps without even realising? I crash every time this happens 3 weeks after acute infection has cleared up. This has happened about 4 times over.
@@Feirin332 possibly, though I did test negative when I went in for the sudden hearing loss. It is always so up and down, but things have very much scaled up in the past 2 months. Hope you're feeling better!
Did you improve on anticoagulant therapy?,
I want to thank you so much for all your work you are doing. I am M.E./CFS sufferer for the past 6 years. I have cried listening to professor Wes Ely as we have never been taken seriously by the medical profession. I have to do exactas he said half everything that I think I can do and half what energy I think I have and still make a mistake’s. I am looking forward to you upcoming videos.
Love this man. Such amazing energy, clear, passionate, compassionate, authentic, transparent, dedicated, humble, smart. Great guy to have on your team!
I've had pretty severe ME/CFS for 15 years. A stellate ganglion block has been the most impactful thing to help me! I can now exercise and leave my home! It resets your autonomic nervous system and has given me some of my life back
Where did you have your block done? I'm seeing more patients mention this but I'm not sure if anyone near me is doing it.
Fantastic interview! I love this doctor, he is very candid and has so much compassion. Great to hear him acknowledge the neglect of ME/CFS and his thirst to learn more. I wish he was my doctor, we need to clone him!
Listening to this doctor being so honest, positive and really willing to help us LC and ME/CFS sufferers brought tears to my eyes. He is a rarity in the medical community. We've been gas lighted so much. Here's to hoping we get at least some definite medication for LC and CFS. 🙏
It's too bad there aren't more doctors as passionate and humble as Dr. Ely. It might require Dr. House A.I. to assess our full medical history and symptoms to come up with individual solutions for us all.
1 use AI to record permanently patients description of symptoms. 2 run symptoms thru AI data sets. 3 allow Dr to make informed decisions based on data collected and screened thru AI. If not satisfied take case to other Dr to re review data collected thru the AI..
It’s truly amazing that the medical community isn’t grappling with an entity that has thousands of U.S. patents on it. They need to wrap themselves around that fact & start forcing the use of science and their fragmented dysfunctional “professions” for the well-being of all human beings, currently being used as a means of generating wealth through a “medical industry”. Really they need to get their profession out from under the grip of finance, immediately!
Thanks Gez much appreciated as ever. As somebody who was diagnose decades ago with ME/CFS after devastating infections and who now has Long Covid I had to learn over years of experimenting on myself to live a 'new normal' this phrase is often used after major bereavement and of course learning to live with this new self involves grieving the old one. I have always felt shame at having an illness called ME when people presume it is something to do with aspects of your personality. You feel like shouting it's not 'me' it's a real thing. I often think there couldn't be a worse name for it. Anyway sending you all my best it was a wonderful video thank you very much.
Yes, and also the experience of NOT being believed--dismissed, gaslit, patronized, told one is "depressed," a "nut case," etc.
If only all Doctors were like this Dr - Not all hero's wear capes springs to mind. I loved when he said - Make a list of the things you want to do today and half it,followed by - How much rest you need today and double it ❤Thank you sooooo much, once again for all your hard work and commitment to the LC community Gez - Speaking of hero's - You're certainly one of mine 🙏
That’s so kind of you - thank you Dee!
@@RUNDMC1 You're more than welcome Gez - you've been the light in our darkness ✨ and should be officially recognised for the support you've given to the LC community and your commitment to sourcing out all the professionals that you put on to your podcasts. The help and guidance that is subsequently given -🏅 absolutely outstanding 👏🏻👏🏻👏🏻👏🏻👏🏻🙏
So wonderful to see part two of this interview. Thankyou so much for keeping us in touch with research, approaches, etc. I loved your book and recommend it to every Dr I see. Your spot on commentary shows that you truly understand the soul sucking thing that Long Covid is. Take care!
Thank you Cindy!
Wow! That makes me very hopeful. I and millions like me needed that. Thank you all for this.
Can't say that I'm "very" hopeful, but at least encouraged!
Thanks Gez, and Asad. Really like Wes, he’s so positive.
This dr does give hope and I appreciate his humility and honesty.
Dr. Wes gets it, plain and simple.
That was a wonderful video. Refreshing to hear. Thanks to all 3 of you.
If I did half of what I wanted to do on any day I’d wind up in hospital 🤣
1:52 think about how much I want to do today and cut that in half. Last I checked halfway to the bathroom didn't quite cut it.
2:03 think about how much rest I need and double it... I need to test about 16 hours out of the day...
Good talk. 😐
Gez, I read your book a few weeks ago and loved it! It is so thorough and organized. I felt that it helped me organize in my mind everything that I already knew about LC and I use it as a guide now when I get confused again
I’m so happy to hear that! Thank you :)
Gez I think I’m most grateful for you. You’ve been the earliest and clearest voice, and in the US it’s taken absurdly long because once one side took a stance, the other side felt obligated to throw in even harder on everything perceived to be the opposite. And now, none can admit error, ever.
So I’ve kept coming back to your info because you’re one of the few making sense.
That’s really kind of you, thank you :)
Agreed! Thank you so much Gez!!!
STANDING OVATION DR. ELY ❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤
You are saying everything I've been saying for the last five years 🙏🙏🙏🙏🙏🙏🙏🙏
Thank you, and thank you for your passion to fight for us all. This is giving me hope.
Thank you so much Dr for acknowledging the individual and acknowledging your actions from the past and your new attitude to medicine going forward.
I wish all doctors were like him! He such a stark contrast to London hospital doctors that killed my mother as i walked in on them! God bless you
Had covid and 2 weeks later started with arrythmia. Drs, family, friends all push for an ablation. I've resisted since it doesn't seem to cure the underlying issue. Stage 3 for microclots. Glad to hear drs are starting to "listen" some more. Need them to also "think."
Amazing video! I finished your book recently and it has a lot of useful information. I am excited to consult my doctor about potential treatments. LC has turned my life upside down and I am so grateful that people like you are putting together resources to help people. Thank you :)
This is so encouraging to hear. I have suffered with ME/CFS since 1994. Apart from the debilitating symptoms, one of the hardest things has been having the one disease that cannot be proven by a blood test and that most people roll their eyes at. Going forward I think PEM - Post Exertion Malaise is a much better name for it as it better conveys how the disease affects sufferers. Some days I can walk 200 metres and I ache for days after like I've run a marathon. The thing that makes this disease hard for non-sufferers to believe is that somedays I can walk 200 metres and be fine after. Easy for people to then think it must be depression, anxiety or some other psychological affliction. I don't judge them - I would probably think likewise if I did not suffer from the disease. I always say that you never really understand this disease unless you have it yourself.
First of all…thank you Gez for being a champion for all of us suffering from LC. I’ve learned so much from you and your guests. You have afforded me some hope and made me realize I need to change certain aspects of my life in order to function with what is my new normal. There is no answer presently and I have accepted that, it’s just going to take time. I just wish they could come up with an answer to LC as quickly as they did a vaccine.
Really appreciate the validation of what many of us have been going through. Hope hasn't kept me going though. Hope has become a very toxic factor in my mind whenever doctor gaslight the condition. I understand where people are coming from when they portray hope as a stronghold. We've all been there, I guess. But it becomes a retraumatizating experience when hope contributes to more disappointment.
I surrendered. Having given up also gives me some comfort and relief, accepting my own situation indefinitely. It doesn't mean that I stopped trying. Life might be less exciting without hope but less excitement is also beneficial with ME/CFS. Excitement requires energy I'd rather invest in tangible goals and activities.
Thank you so much. I seriously need some advanced help with this.
Praying 🙏 for answers and help...
Now that’s a doctor. I will not abandon you I will maybe send you to different people. I will be honest with you, but I won’t abandon you.❤🙏
Amazing, love this interview! Yay Dr Wes Ely! I’m reading his book!!!
Thanks Mary!
God bless your thinking and wisdom and courage. Thank you !
May I simply add the fact that NO-ONE in the world knows that I am one of those millions suffering simply because I got Covid in 3/20 and my doctors don't want to talk about it, was not able to be tested,, and I have had no way of registering in the World of my incredible and painful journey. I have actually brain surgery prior, that was much easier than my Covid journey. It has deeply impaired my vibrant life as an artist, and I am holding on and , am simply deeply grateful for your gentle and very intelligent humility and your wonderful "let's do it" attitude. Really deeply impressed. PS.,,, my husband was a great scientist and he would certainly want you to be in touch with his friends, Anthony Kamaroff and Eric Topal at this time
Really enjoyed this and the length was perfect for my long covid brain!
I wish these researchers would get on Facebook at look at the groups set up for long covid as we constantly talk about our symptoms and what we are taking and trying! If researchers could connect the dots! Why are we all low in vitD b12 have vertigo and digestive issues chronic fatigue .. research said covid shedding was in our organs especially gut! Why do many of us have MCAS !
All your vitamin B s are made by gut bacteria in your gut, so if you focus on sorting out your gut then the vit b will naturally come back which will help your nerves heal and the pain and tingling will go down. As for vit D- sauna or get outside more.
@@marky5493If I knew how to sort out my gut, I'd be jubilant.
Thank you!
Great interview! Excellent questions, clarifying and inspiring answers. Looking forward to the interview with Dr. Iwasaki!
Thanks Holly!
Thank you Dr Ely🫶🏼🫶🏼
Thank you so much. I appreciate what all of y’all are doing, this long COVID is not so much fun
Not the best ride in the fairground, that’s for sure
Thanks again Gez, will be interesting to see your discussions with Akiko and if there were any updates on their Paxlovid trials.
I’d love if you could get her thoughts on BC007? A Yale study she was involved with also concluded the link with long covid and autoantibodies
I am 2-year post covid with all of these symptoms. It is encouraging to see Dr's like this stepping out of the Big Pharma line and speaking the truth. How do I get in your trials?
Great series of films, thanks Gez - Wes' work is very interesting and I have high hopes for the Baricitinib trial.
I'm likely an activated immune system or dysautonomic long hauler, as described by Wes. Alongside the various supplements & drugs suggested by practitioners on the channel, I've recently had extremely positive results from following a keto-esque diet, intermittent fasting & cold showers. Through trial & error, it's clear that the diet (etc) is only alleviating my symptoms and not addressing the underlying cause; however, I would recommend trying it to anyone who thinks they might be a similar type of long hauler.
I wish that my doc possessed your ideas and compassion!
I have been dealing with Long Covid since 2020. I am SURE I didn’t get as sick as I was expected to because I started doing Terry Wahls autoimmune diet more strictly from January 1st 2020, after my son told me about Covid and about the usual Chinese health system (via his Chinese friends in China).
I know I’m somewhat better than I was but still my SOB is erratic, my thinking and memory is erratic, I require an absurd amount of sleep all of which which has killed my ability to work!! I slept 11 hours last night! Who wants an RN with iffy critical thinking skills, who desperately needs a nap in the afternoon and and gets SOB when stressed, or if rushing?! That is No Good in a code, and not so great with grandkids when they’re little daredevils!! How do I explain to a 3 year old if he scares me, I get SOB!? Trust me, it doesn’t impress 6 year olds either!!
Hearing someone in healthcare actually gets it though? Believes us!!!? But how long will it take to educate OUR providers, who have to buck their healthcare systems for them to be able to Act? That’s the most infuriating part-I know mine listens to me, but IH hogties them.
What is SOB?
I love your approach, you are a true doctor. Other doctors should have the same approach and the patients would feel like they are truly cared for. God bless you. LC is new but that should not give the most doctors the excuse to brush off the patients through their ignorance, arrogance and dismissal. It's not only a lack of knowledge in most cases of these doctors , but it is their lack of simple human approach to help. Patients are not there for them as a walking number with the $ sign only,
Once again thanks so much Gez....I’m going to bring up that drug at my next (2nd) long Covid clinic appt:)
Let me know what they say - pretty sure they’ll shake their heads 🤦♂️
What drug are you considering?
@@RUNDMC1.. please spell name of drug, med background here, lc , tu fir all.. going to get yr book.. huge thankful 🤗 hugs❤
@@brendabrenner2891 Baricitinib
We need Ampligen NOW. That’s the best potential to help most immediately for the most amount of people…not sure why more aren’t talking abt it…
It's both up and down. He doesn't have answers it appears.
There IS NO 1pill, no 1 cure.. its a combo.. start slowly, even herbals aren't for everyone .. nad +, nicotine patch, berberine, choline, nac, act, up d3/k2, up b, etc.. google REMISSION boime.. Dr led patient help🙏❤️
What a wonderful doctor! I wonder if they are also working with kids with long covid?
what do to with chronich flu like feeling? soar throat, head pain ect? will this trail cure that?
I live in Ireland and the doctors here still don't believe in Long Covid. I just gave up trying to get help. I'm better than I was, but still sleep on and off through out the day, and can't do much. Have a few other ongoing symptoms, but just thank my lucky starts that I'm retired and have the luxury of not doing much.
In ireland too, my life and brain has been utterly destroyed, and I have seen multiple doctors and consultants and not a single one has yet even used the word covid, even though I was perfectly healthy up until the time I got covid in march 2020. They somehow can't bring themselves to consider it.
@@callmedenowhen I talk go see a docter, I NEVER EVER use the words long covid or covid as you'll just get a blank stare I rather explain how I'm feeling or rather explain the problem and my possible solution and put it past him. Other than that you not gonna get any else much more useful.
@@callmedeno I know what you're saying. After going to my doctor with really hard symptoms, he tossed me out the door one more time with "Well, come back in a few months. I started crying, saying "Please, please help me." He just said make an appointment for 3 months from now. That's when I knew I was just wasting my time.
It looks like you're investigating what you can. Keep up the good work. 👍
@@marky5493 Yes I think similarly, I mentioned it once, but all the other times I just explain symptoms hoping that at least some of them would naturally get there. But alas.
@@ContraryMary Sorry to hear you're in a similar situation. If we ever get through it at least we will have enough gratitude to keep us going for the rest of our lives.
All the best
How can I find a Dr. Like Dr.Ely near me?
I’ve been searching in Google the role of serotonin, and it has a role in sticky blood and other things such as energy levels.
Maybe, depression in long covid patients can be because the body adapts to that new reality. I got to that conclusion by looking at my own case: I have micro clots and clearly, I’m depressed, anxious, etc.
I’ve been watching some of your videos and I could say that, in people with long covid and sticky blood, it would be TOTALLY normal if serotonin levels decrease, because it would be the only way to keep the person alive, and the body is not dumb: it’s not going to produce more of something that can cause a problem.
Serotonin helps to have clotting/coagulation. If there is already blood clotting because of the spike protein, the body could find a way to adapt to that, by decreasing serotonin and preventing more blood clots. The problem? Depression, anxiety, psychosis, and other…
And I could also say that Type A personalities would in MY theory adapt “better” to Long Covid, whereas Type B personalities could be at more risk of dying due to blood clots because they wouldn’t adapt as well, UNLESS their bodies do a lot of work adapting, and they become more stressed and anxious than they were before, by decreasing serotonin levels. Sorry for my English, not my first language.
You've expressed yourself just fine in English!
I think Dr Wes has listened to SickBoi by Ren. (When he says he's in reform and is listening to his patients)
There is No new normal. I am making an appointment with an end of life doctor. 40+ months of torturous hell. And I am a tough minded person.
How long do we hold on?
Thanks for your apology, that means a lot. But I just don’t know how much longer I can hold on.
We were gaslit for so long, now 2 years behind because of this.
How do we approach doctors who want nothing to do with us?
I really though the medical community would have had our backs instead of calling us liars.
Now my teenage son is not going to have a mother.
I’ve had to go that deep inside myself and find peace that he will be ok.
There’s nothing to hold on to.
But again…. Thank you for your change of heart. I will share this video.
I hope you're still with us. ❤
27 yrs ME / CFS AND much worsened since MILD COVID INFECTION. NOW - I FEEL like I have dementia, HORRIFIC POTS , DYSAUTONOMIA,.
HYPOVOLEMIA 59% of a normal blood volume!
HELP PLEASE
Hi Doc.
Thank you so much for every thing you are doing to try to help us. I'm 73. And I have been ill for 41 years. I had a hysterectomy at 32. Then I got Epstein Barr virus. I never recovered. 8 years ago I had surgery for breast cancer. The side effects of the radiotherapy left me with Fibromyalgia. I read about a vegan diet being really healthy. So for 3 years I started juicing, smoothie and proteins shakes. I lost two stone in a few months. I was seeing a gastroenteroligist . He said I have a bad case of IBS, and would have to live with it. I have seen so many Doctors and alternative practitioners over the years. Spent my life's savings, and got no where. My GI Doctor sent me for a CT scan and a pet Scan. They now tell me I have lesions on my lungs. My lung specialist says it looks like cancer, that may be coming from my breast again. I said I can't go through any more treatment. Then two days after my hospital visit, my husband and I went down with Covid. That's 18 months ago. We are still ill. About a year ago I went back to eating meat, fish , chicken and eggs. A few veggies and mostly no fruit. Since Covid I can't eat so many of the foods I did before. I still can't put on weight. I have been reading every thing I can about long Covid, and the link with mast cell activation. Four years ago we told my GI Doctor that every thing that goes into my stomach makes me ill. Food, drugs and supplements. There are a very few supplements that are clean which I take. I take antihistamine, h1 and h2 blockers. I have done 12 tov15 hours a day fasting. I'm hungry all the time, so I have to keep eating, but I can't put weight on. I don't know what happened when I went Vegan. But I think I have had Mast for 41 years since the Epstien Barr virus. No one knows what to do with me. I have been treated for Candida, but don't get any better. I have had many rounds of antibiotics for sibo. I have been told it may be leaky gut, mould toxins. Oxcilates, and so on. I feel every day I'm going to die. And to top it up. A few weeks ago we got Covid again. What now . We do need treatment yesterday. My GP is good, but doesn't know what to do with me, as all the drugs for mast only makes me worse. I have even tried CBD oil, low dose Neltrexon. But every thing makes me worse. My hair is falling out, the have skin problems. And my guts are in hell. I looking to see a functional doctor. But I'm not sure what good that will do. Do you have any answeres. God Bless you with all you do.
I am not the doc, but maybe I can help.. I understand you may not want to talk to a random person..
Tell me, have you had your B12 checked?
@@LibertasOrationis Hi there. Thank you for your reply. I have just had blood work done , and waiting for the results. My last b12 blood test showed high levels of b12. I take b complex along with a few other supplements. But I have just started working with a functional doctor. We have done a stool test which has showed up alot of problems. Along with leaky gut. Waiting to see the next step. But thank you any way. Be safe.
Bless you, as you try to navigate the nightmare you're enduring.
Can anyone please recommend a primary care doctor that takes ME/CFS (dysautonomia and long COVID ) seriously in the San Francisco Bay Area / South Bay Peninsula. And a specialists
I’ve been referred to Stanford but am dismissed by my current primary care doctor there (a DO), as well as one at PAMF. I’m near San Jose and Palo Alto and have a PPO insurance plan. Thank you!!
what about lung/breathing problems caused by the C Virus?
I am a post-COVID/post-Pfizer vax ‘Long COVID sufferer over 12 months, living in Australia. I have spent $1000’s on specialists, recognising I have been paying to be gaslighted in treatment by members a conservative, risk adverse and reputationally protective model of treatment. I am curious of any resources, community groups, treatment centres that offer some light at the end of the tunnel for me within Australia/Australasia. My symptoms are sudden L.Ear hearing loss, fog, tiredness, vertigo, bi-lateral tinnitus. I have given up work as a Psychologist for most of the last year. Returning to part time work now but feel less than adequate cf. my previous self in the role. Any sage advice welcome. Thankyou
I've had long COVID since 2022. I've been doing okay for the past year at my new normal, but I recently had surgery and experienced refractory hypotension during and after surgery. My BP was really, really low (80's over 30's) and not responding to medication or fluids. I've never had a problem with anesthesia before and was wondering if long COVID (damage to the vagas nerve?) could somehow be responsible what happened in the OR. I need another surgery in 2 months and I don't want a repeat of what happened. Has anyone been through or heard of something similar and know what the surgery team did to manage the risk?
What is the trial ?
Dr. Ely, if I take my wife to Vanderbilt from Eastern North Carolina, should we go to the Mt. Juliett, Brentwood, or Vanderbilt Medical Center for evaluation?
What happened to the low dose naltrexone and an antiviral? I just heard someone say that absolutely worked!
I became disabled in 2016 after getting a hospital acquired superbug. Chronic pain, muscle stiffness, pots, tinnitus, migraines, shortness of breath, coat hanger pain and fuzzy brain.
2 years later my teen son came down with pots after a stomach bug. We are suffering. We need a cure or something that really helps
If we know that a vast proportion of the population have a circadian entrainment that's markedly dysregulated, inadequate in full deep sleep, low in magnesium, selenium, iodine, vitamin D, and omega three poly-unsaturated fatty acids, are disconnected from a normal pattern of magnetic field exposure, would it be useful to address these while we are waiting for some of the more specific targeted strategies for treating virus related condition?
Gez, have you tried paxlovid yet? If so, how many days?
Could only tolerate it for 4/5 days. Didn’t do anything for me over that period
If anything, what has been found to give some relief?
Gez, any studies so far on 2020 long haulers unvaxxed still having symptoms vs those who took vax, number of doses etc? I feel there has to be divisions between those who have vax damage as opposed to those who developed LC purely from infection. It all seems to be overlapping and intertwined and ought to be separated out..lol..does that make sense..(it's still early😜)
Honestly we’re a long way away from having data on how that all breaks down! From my surveys on vax reactions, the majority of long haulers didn’t find getting the jab affected their baseline - but this is just one angle on it
@@RUNDMC1 Thanks Gez, wishing you continued healing.
Hi, I’m a nurse with long Covid. Symptoms include cognitive issues - short term memory loss, fibrosis in lungs and still on oxygen at night - two years out, and peripheral neuropathy- which seems to be my biggest issue on a daily basis right now. I have not been able to tolerate the medications for neuropathy, just wondering if anyone else has this problem. Thx
Yes. Gabapentin was no good for me because of it's sedating effect. LC gave me a sleep apnoea and whilst I still woke every 110 minutes when I stopped breathing the hypoxia was awful
Yes. I'm a nurse as well. It will be two years in Jan. On a cpap at night with oxygen. No lung fibrosis. Cognitive issues, headaches, peripheral neuropathy and what I describe as walking on the boat feeling have been a daily struggle since day one. The long haul clinic has really been of little help. They prescribed Cymbalta which did nothing. After that didn't work They have offered nothing in over a year. Finally just referred me to neurologist and after going over all my symptoms she asks" well can't you just exercise." My response "Can you make my legs stop hurting?" I hear so many other people offered more treatment options my Drs. Says no to everything. I just want my life back.
What is the arthritis drug he mentioned, I could not understand it?
Baricitinib
@@RUNDMC1 Thank you very much for all your work with this channel
Def need treatment for "guidelines paralysis" Doctors can't be doctors anymore. What is that going to look like in future?
Have you considered intermittent fasting? Nattokinase? How about bromac (Bromelain & N-Acetylcysteine)? Dare I say IVM?
Tried all (personally)
All good, but how could patients in Europe get those treatments? 😢
How about vaccine injury?
Can we please always say long covid and long vax