@RUNDMC1 nice to hear. How many percent would you estimate that you've recovered? Are you 80% back? Thanks. Would be nice if you could update us on your recovery.
@@sgordon812311:17. Is that for insomnia? I don't wake up during the night but my circadium rythymn is backwards. I get more energy, brain fog goes away after dinner and so my brain does not calm down until 2am or later. Anyone else have this? It is sooo hard to get back on a regular schedule and I feel like I'm living in another world than everyone else.
Thanks again for all your work despite your condition. Each time I hope you would say you are cured, you deserve it so much ! From a 2020 long hauler who is following you since the beginning. ✨
Thank you for just being there when no one was. LC really hurt, id like you to be the first one to know that after 2.5 3 years my body feels fully heeled or as heeled as it could. It was so painful that it never really hit me that i couldve gone to sleep and never woken up the next day. This comment is not enough for the work you put in while dealing with LC aswell. I hope your all heeled and I really want you to know that youve done real good for thousands if not millions in this world.
What an incredible thing to hear - every time I hear about a long hauler getting better it’s the most incredible news. Thank you for all of your support and wishing you all the best for the future!
Hi Gez, how are you? I regularly come back to check in on how you are, in the hope that you have made a full recovery. I wanted to say thank you for being a beacon of hope for us long haulers, particularly in the early part of the pandemic when there was little information out there and like many I was scrambling around trying to find any answers! Recently reached my 3 year Long Covid anniversary. I’ve gone from being totally bed ridden, to bed bound, housebound and now I can venture out 2-3 times per week. Total rest and pacing is what has worked for me, although I still have a long way to go. Take care
Hi Chuchu, thanks so much for writing. I’m so happy to hear about your progress. For the vast majority of us, pacing is absolutely key. I’m not far off my five year anniversary now. Things are still pretty rough but I am hoping to have some positive news to share in the upcoming weeks. I will be back on this channel, sooner or later! And best wishes to you in your continued recovery :)
First wave, March 2020. I had MCAS and POTS BEFORE Covid (but they did not impact my quality-of-life noticeably). Definitely have dysautonomia AFTER Covid. It DOES impact my life, particularly sleeping and temperature regulation. I follow Gez closely; if ANYONE is going to get better / find a solution form those of us in the "first wave" I honestly believe it will be Gez. And so far, it looks like he's coping well but not back to full health. 😢
Jab d8dnit for me. Lost vision right after then told Delta caused LTC nope I read Kansas vs Phizer. Now I have 13 specialists. Haven't worked in over 3 years
@@RUNDMC1 I had hives all over, horrible anxiety, and exhaustion like I was going through radiation treatment again. I developed a new and severe allergy to dairy. My lips would swell. It was a scary time. It took 6/8 months for my body to start to settle down. My Doctor didn't know what it was. BUT said it could be long covid and treated me as such. I am the one who told her about blocking H1 and H2 , and a low histamin diet. I also took a cocktail of vitamins and supplements you recommended. Within days I started to feel better. Again, THANK YOU. I don't know what I would have done and how much more I would of suffered if not for your videos!! I was not alone !!!
@@RUNDMC1 again you have helped so many people. In the US no one was talking about long covid when you where trying to figure it out! I shared your videos with others.
Hey Gez-thank you as ever! I have both (of course 😂). For those of us who menstruate the dead giveaway for MCAS is the once a month symptom flare-discussed in your video with Dr Tania Dempsey. I first found out about using HRT to ameliorate this from the husband and wife team Drs Sarah and Paul Glynne. I have seen over the last couple of years that GPs and LC clinics are partially catching on to this, it’s a low hanging fruit for treatment!
Thanks again for your content mate, hopefully your recovery is moving forward. I recently found a pot of miso soup with added ginger, turmeric, garlic and black pepper gets me back to baseline from pots and mcas symptoms pretty reliably, and is also quite tasty if you like that kinda thing!
I haven't finished watching yet but pretty excited to share that I did a 5 day supervised Water-only fast 5 weeks ago and have completely resolved my LC (16 months). I have my life back. Edit to include that I eat wholefood plantbased diet since 3 years ago, very clean with no chemicals. Not sure if the Fast worked better or not because of that
@Lewisss89 Hi Lewis Post exertional malaise, what I called concrete in my muscles, crippling fatigue after any effort. I've been back at work as a Delivery Driver for 3 weeks, amazing!
@RUNDMC1 Well thank you for being with me on this journey, your discussion of mitochondrial function was what eventually put me on the path to doing a Fast. Great book BTW also
I’ve been coming back every 6 months and hoping that you’ve finally recovered, Gez. I’ve been following since Sep 2020 as I have been going through a long term illness equally as torturous (protracted antidepressant withdrawal syndrome), that was originally mis-diagnosed as post-viral fatigue. Hopefully one day I’ll come back here and you’re better, and I am too. Keep fighting.
00:06 Understanding the complex interaction between MCAS & dysautonomia 01:38 Long Covid can lead to prolonged fight or flight response 03:05 Identifying MCAS and Dysautonomia symptoms and triggers 04:35 Testing improvement through antihistamines and diet changes for MCAS 05:57 Identify and manage MCAS and dysautonomia for better quality of life 07:16 Alcohol's unexpected effect on heart rate and symptoms 08:32 Digestive disruptions impact sleep and health 09:52 Symptoms overlap between MCAS & Dysautonomia, crucial to identify triggers. Crafted by Merlin AI.
Thank you so much, ive had lc since March 2020, and then got the JJ in 2021 and was immediately super ill. I had to get it to travel for my brother's funeral. The myriad symptoms are so unbelievable, i really don't think anyone not suffering with them can understand how much we go through daily, since we get 'used' to it, and mask our symptoms when around others. Just digestion is a task! I went full carnivore, which definitely helps, but my family and friends seem to think ots e treme, when they don't have a clue the cascade of pain and lack of sleep eating can cause if it triggers you. I appreciate all that you do, it helps to not feel alone, although i wish noone was suffering as well. Methylene blue, natto, taurine, glycine, vit d3 k2, l cysteine, astanxthin, cod liver oil. Iverme ctin , i use it all in hopes to help my mitochondria and clear the spike. It is just so much and doctors are of no help.
Sorry you are suffering like the rest of us. Thanks for sharing what you are taking. I keep trying what works for others, in hopes I can find what will work for me.
Gez- your contributions to the world of Long Covid is greatly appreciated!! Just shared this with my cousin who is newly diagnosed with chronic fatigue and Long Covid.
Thank you again... and again... Your description of symptom clusters and triggers is spot on to my experience. No doctors or specialist can comprehend what you are presenting... it makes no sense to them contradicting what the Hippocratic oath means when they treat the symptom as if it were something else they are triggering new clusters of symptoms. Sadly your content is severely limited to only the tip of the iceberg. You know there is a greater monster lurking in the depths waiting to erupt from your guts suddenly manifesting multiple symptoms like "Don't trust that fart" "How long ago did I pee my pants?" 'Spastic twitch dancing" "stiff brain" "Head on crooked" "Stick through brain" "conversational gut gurgling" "honkey spleen" " "sudden kick to the balls"... and the every ones favorite "Human Puddle" These are just a few nick names I give my symptoms. I attempted to catalogue and date the symptom clusters at first but it was so much so often it was debilitating to recall all those events so I gave up journaling as too hard and just the memory of the conditions trigger relapse. Eating food is a necessary evil I try to limit the hours my gut is occupied with digestion. It doesn't seem to matter what I eat... every thing triggers something. So I fast daily one meal and skip a day now and then. It doesn't kill me to go skiing so I hope to return to work full time instructing.
Thanks as always Gez. I think it's also worth pointing out that you can just be histamine intolerant (i.e. not process histamine well, DOA can help with this) but not necessarily have MCAS. So an allergist has told me about my condition at least. I would also advise going gluten free if someone has dysautonomia and reducing carbs, this has been my biggest help
Thank you for your continued work for long covid support! I have MCAS as part of my long covid and antihistamines have made an enormous difference to my overall levels.
A histamine free diet, fasting, H1 and H2 antihistamines have been my ticket to a 95% symptom free life, thanks to the interviews, research, and wisdom on this channel. There's a lot to it, but I'm 4.5 years into long haul COVID, and there's no room for being complacent, or stagnant if one is going to participate in life.
Hi Gez. I have confirmed MCAS (We talked a bit on Facebook about it, I am Diego from Spain). I have good reasons to believe that the Dysautonomia is secondary to MCAS, I believe that I have a mechanism and a mitigation for it. What I believe happens: 1- First the mast cells activate in the gut. 2- Once the mast cells activate and release histamine and other inflammatory stuff they trigger inflammation and often diarrhea (I believe that sometimes there is fluid resorption later so you may not always see it , just get bloated an later the bloating goes away and then you pee a lot). 3- Both inflammation and diarrhea require sodium to drive the water there. Particularly diarrhea can use a ton, losing 2L though there can mean losing 20 about grams of salt (I have lost that in a single go...). 4- That triggers some hyponatremia and a low blood volume. 5- The low blood volume is behind the POTS like symptoms. 6- The hyponatremia combined with the low blood volume is a huge stressor that puts the autonomic system into overdrive (Trying to keep blood pressure up, oxygen and nutrients reaching the tissues). If things happen like I believe they do, there is one mitigation that would improve things acutely. Salt+water. I know that In my case it does. I also know that there are studies for pots showing that adrenaline halves right after having salt and that large volumes of IV saline are used as POTS treatment. What I do and helps a lot is dissolving 5g of salt in a glass of water and drinking it, following it with as much fresh water as I want. If things have been beyond terrible I may need to repeat that (waiting at least 1h if not 2, as too much salt sends me back to the toilet) but a huge improvement is seen within 30 minutes. An useful way of knowing when to do the salt in a more proactive way is tracking heart rate. I know that if I am at 100 or more resting (65 to 70 is what I have if everything is 100% fine), even if I am not feeling terrible yet, I will soon and having salt then will lower that heart rate and avoid it. Specially if I am going to sleep even near 100 (95 is enough to prevent me from sleeping), I won't be able to. I will fell hot, sweat, the legs will hurt. If I wake up, have salt and go back to bed, then I will sleep. Another reason to think that MCAS drives it, is that MCAS meds have reduced my need to do the salt in water thing by a lot and every MCAS intervention that helps , also lowers significantly my resting heart rate. I would love to hear if Gez or anyone tries having salt to help with the symptoms. One caveat, if you believe that you are about to have diarrhea, wait until it is done or it will likely trigger it to happen and go right trough you. Although I also know that exercise can directly trigger my MCAS symptoms with no antigen involved so I also believe that there is some sort of loop that the autonomic system may be signalling the mast cells to go nuts. By the way you made a small mistake, mast cells are not in the blood. They circulate as their progenitors and mature to mast cells once embedded in the tissues. That is one of the reasons why MCAS symptoms are so diverse, it depends on where the ones that are reacting are and one of the reasons why it is hard do diagnose.
@@RUNDMC1 It was just a minor mistake, the video was great and any divulgation about MCAS/dysautonomia and long Covid is a good thing. My belief is that most long Covid cases are different MCAS manifestations (even the blood clotting issues as mast cells produce heparin and the body might just ramp up the clotting to compensate so when the mast cells calm for a while you get more clotting than expected). I also hope that this will eventually led to better treatments being discovered as current MCAS treatment leaves to be desired but with so many people with LC they will eventually have to put resources into solving it.
@@eruiluvatar236yes but I can’t bear technical mistakes! Thank you for pointing it out. I have now added a correction subtitle to the appropriate point in the video :)
I have histamine intolerance and POTS, and respond well to salt+fluid loading; I believe fludrocortisone has helped me in the same way, but it requires caution if blood pressure is high at all and monitoring of blood electrolyte levels. Also agree that too much salt+fluid can be... disruptive. FWIW I have 1l of water with 4g salt before getting out of bed and another 1l shortly after.
Gez have you seen the latest research about spike proteins turning fibrin 'toxic' being the apparent root cause of everything? (and a treatment for it in the works). It feels like a significant development but because it was only published last week most people aren't aware of it yet. Could make for a good future video
Yes this work is an extension of what Prof Pretorius research has previously found. It’s more evidence for an existing theory/mechanism, rather than changing the game IMO. And obvs there are many mechanisms at play - this is a very complex puzzle!
Thanks Gez, for your research and experiences with LC, you continue to help me and others. I’m currently in an energy crash, and seeking answers still...
Emm great info I can see a mix of these symptoms in myself particularly after a hot bath, I'm dizzy and have time lie down a time. Whats real killer is my last crash was March I've been exercising like a champion 30,40 hrs overtime absolutely flying and now wallop everything tumbling, gutted
Dear Gez, Firstly a big thank you for writing the long covid handbook, it’s been hugely helpful and made me feel less alone in what I’m going through. I was wondering if there was a long covid research charity you could recommend? Also I’ve had long covid for 4 years and I would like to do what I can to speed up the process for finding a cure. As you are in communication with many experts I was wondering what can be done to help? Funding? Pressure on the government? Change in legislation? Although I obviously have limitations in what I can do due to being unwell I would like to do what I can to help. There are so many people with long covid, if we could all be mobilised to help it would have a huge impact and also boost peoples’ morale by feeling like we have a focus and we’re working together for the greater good. Looking forward to hearing from you
Hi, thanks very much for your message :) There are large activist groups already for LC, and they’re doing cracking work. However it’s very difficult to change the research agenda as it requires political will. There is still quite a bit of good research happening at the moment, but unfortunately good science takes time and patience is hard to come by when you’re suffering as much as we all are! Keep your eyes peeled for possible announcement of BC007 first stage trial results next month 👍
Thank you Gez. I am largely out the other end of MCAS thankfully but still get dysautonomia with a bad crash. For me the key to tackling MCAS was avoiding VOCs, having FIR saunas to get rid of pesticide (lindane), and avoiding foods which were the worst triggers. I also found colonics v helpful and herbs to help with phase II liver detox. Interestingly, once things had stabilised a little, I tried eating tiny amounts of foods which had triggered MCAS and was able to gradually reintroduce things like bell peppers, tomatoes and soft fruit. I would eat a piece of bell pepper of about 1cm sq. and leave it at that for a few days. It seemed to work.
Good studies etc have Dr. Hauser about MCAS/POTS/hEDS... I have super painfull and cracking joints and stiff muscles, LC since 2020. Still I think veins and clotts are the key.
So nice to see a new video from you! I agree these two conditions are most commonly involved the long Covid equation . It wasn’t until I was diagnosed with hypermobility, pots and MCAS (the trifecta) was I able to make any meaningful improvements after my initial 2020 infection.
1. short fasts of even 24 to 36 hours will increase cortisol levels, which therefore increases parasympathetic activity. 2. unlike immunoglobin E allergies, immunoglobin G reactions can take much longer than 30 minutes to manifest. sometimes over 24 hours. 3. increased cortisol and adrenaline levels will trigger mast cell mediators, which are vasodilators, which therefore increase orthostatic intolerance and tachycardia, which in turn further increases catecholamines and cortisol levels, and the positive feedback loop continues 4. you may need more than one week to notice symptom improvement with a low histamine (and possibly low salicylate) diet. try 12 weeks, but track your micro nutrient intake and blood work done to make sure you aren't consequently low on any vitamins or minerals, and to ensure you are consuming enough protein and healthy fats 5. there's likely physical damage to your endothelium, which may not be entirely self resolving. compression stockings and ample hydration and electrolytes are essential to help prevent blood from pooling from the damages veins in your legs. 6. i'm probably a little wrong about some of this. MCAS and POTS (and PEM, which is to do with mitochondrial dysfunction) are relatively new conditions for me, but i have seen improvements since march (tho mostly plateauing since july)
Thank you for all the good info Gez, that you bring to us. I am glad to see I'm getting more notifications from you. Missed you and ŵas worried you'd gotten worse. All the best to you and to your health being 100%. I have also been following you from the beginning beginning. You don't know how much it means to be validated thru your experience and knowledge as those who are normal just can t relate.
Love what you said here Gez especially on autophagy. It’s a little bit like people thinking (like myself) the mind body heals and perhaps it does - but in reality meditation etc just increase Vagal tone so above all it’s like using yoga Nidra to put out Autonomic fires. Hence exercise is just too much as we can’t undo the inflammation from it quick enough to get back above water
This video is very interesting. I don't have long covid. I have some autonomic system dysregulation stemming from an adverse reaction to Humira in 2106 which caused all this nerve damage.
Thank you Gez, so very much! Your videos are always helpful. It’s nice to know I’m not alone in this shit! I’m sorry you’ve suffered for so long. I got Covid in April 2021 and it’s now Sept 2024. I am so way over this, sometimes I just wanna end my days. I have chronic lung issues. Coughing up and blowing out tons of mucus all day. Severe congestion, sneezing, watery eyes, still don’t have my taste and smell back. Absolutely miserable!! GI symptoms fluctuate between constipation and diarrhea and normal-ish. Brain fog, fatigue and insomnia. Before bed every night I take my rescue inhaler, then my long acting inhaler, Benadryl, CBD and melatonin. 🤦🏻♀️😮💨 I am looking into the possibility that I may have a parasite infection. One that’s been brewing for probably at least a couple decades! I think Covid may have set it off. I made my GP test me for ova and parasites in April 2022. Of course their test came back negative because they’re so flawed. It was always in the back of my mind. I will be starting a parasite cleanse tomorrow using Ivermectin and Fenbendazole. There are some articles out on long Covid being linked to a parasitic infection. Very interesting, and makes sense why this isn’t lame stream news. They would have to eat their words about how we ALL should’ve used Ivermectin from the start! Love your channel! Please, be well! ❤️
@@RUNDMC1 Are you talking about Borrelia, like the Lyme co-infection? Do you think you’ve had it for a while? I’ve heard cats claw, Chinese skullcap and wormwood are good for that. If the parasite cleanse doesn’t help I’m going to do those. I wish you the best! We’ve suffered long enough. 😔❤️
@@RUNDMC1 Lol no worries, I knew that’s probably what you meant! 😉 I meant to add black walnut to my comment also. I hope you get relief with antibiotics. I went to Germany in April this year to see a professor, 3 x doctorate in biological dentistry. He removed a couple of root canals in the back of my mouth and cleaned out wisdom teeth cavitations from when I had my wisdom teeth removed 20 years ago when I was 20. I had read about the chemokine RANTES and how it affects your immune system, cause cancer and all sorts of autoimmune issues. I was hoping to feel an improvement in my health by now. Not so. I mean, it could take 6 months or more for Mast cells to calm down, so we will see I guess. Pretty disappointed because it was not cheap! My husband and I have spent close to 100 k over the past 3 years of being sick to get to the bottom of this. I just keep thinking Covid brought up all this latent crap in my body, and now it’s like putting a puzzle back together to figure out which piece fits where. 😔 Thank you for your content tho and work in striving to get better, and get us ALL better! ❤️
Gez how are you?? I FINALLY have a diagnosis for Fibromyalgia! That’s what this has been all along! However, Covid set it off. I had weird nuisance sinus issues for 15+ years before Covid. Getting Covid only made everything worse. Please look into that. Fibromyalgia could be what long Covid actually is! 😣 My nervous system has been disregulated my whole life evidently. I suffered from childhood trauma for 9 years. There’s also a genetic aspect to it, which both my parents suffered from trauma as well. You can pass this on to your children! Both my son and daughter experience some Fibromyalgia symptoms, so I will be helping them as well. I need to eat an anti inflammatory diet and really work on my nervous system. I am going to start seeing a Somatic exercise therapist to help to regulate my nervous system. Mindfulness, breathing exercises, stretching and strengthening really help. Maybe one day I’ll be able to hike again…. 😔🤞🏻 Just thought I would throw this out there for anyone wanting to look into the possibility of long Covid being Fibromyalgia. We WILL get better!! ❤❤
Thank you Gez! All your videos are helpful and artfully put together. Sorry you’re still struggling! As boring as it looks (and like we need something MORE dull when managing LC - 2yrs now for me), I reckon I’ll give the low histamine diet a go. I wish I could just yoga nidra & meditate my way to health instead…
I am on the topic too. Looking into thymus peptides and Cerebrolysin. Also there is often an imbalance between copper and zinc, mainly copper deficiency and normal or high zinc levels because people often supplement zinc without regarding copper. That can increase histamines (for example DAO is a copper enzyme)
@Larsonaut Interesting I’ve been having horrible neuro endocrine problems for yrs and I can’t get my thymus checked. Wld u pls elaborate? U may have just helped me ALOT! ❤ I can’t even travel bc I can hardly eat many foods.
@@Southerngrl Thymus peptides are for getting the immune system modulated. Downregulate autoimmunity and upregulate the “healthy” immune system. They are more experimental. Cerebrolysin are nerve growth factors to heal and regulate the nervous system. Copper is one of the often overlooked micronutrients to regulate a lot of pathways like immune system, nervous systems, metabolism, hormones etc. But it is highly recommended to test it before via hair analysis
@@Larsonaut very interesting. I have had some rly bad neuro endocrine type symptoms. Also, suspicious of copper overload but I’m in the US and the traditional medical model is failing me. I’m almost sure I have thymus issue’s bc of my diagnoses but no dr will look further as of now. It’s lead to a very hard way to live for me. So I appreciate ur info sharing. How do you go about getting this said “hair test.” I am on a limited diet, have had to get a hysterectomy, thyroid is constantly reving up, immune systems considered “compromised” and now have underlying auto immunity issues. Tysm
How do you (and people) with LC, protecting vs. reinfection, live their lives in public spaces these days? Do you still avoid live interactions and always mask in public? And wipe down all packages?
Gez, I'm so grateful for your videos. I wonder if you have ever tried hypnosis from a practitioner. My MCAS came on so fast after covid. I feel like it should go away just as Fast, like I need to trick my body lol. Also I wonder if you would possibly put up a video of what you eat in a day. Just like typical foods. I realize everyone has different triggers but It would be interesting to. Know how you navigate basic nutrition Impossibly what and when you take your supplements. Just a thought if you feel up to it. MCAS Is a lonely road.Thank you for sharing your journey!
I get a horrible headache every day at work because of visitors wearing perfume and also dust and perhaps some mold. I don't take antihistamins bc I read that they are bad for your gut microbiome? But while other long covid sympthoms have improved a bit over the years, this one has almost gotten worse unfortunatelly. Anyway, thank you so much for this, I have missed your videos, please keep making them if it brings you joy, bc we do need them 🙏❤️
Still on a low histamine diet - but going to be making a video on this subject next, as there’s some stuff I want to share, but want to get some more time in the bank first 👍
I would love to see an interview with Dr. Sanil Rege about his TH-cam video titled “The Hidden Link in Chronic Fatigue, Long Covid and POTS. A deep dive into the role of the brain”
My Immunology consultant has been doing a regular blood test where my blood serum is separated and mixed with the blood cells from four healthy donors. The mast cell histamine release is then measured. A healthy result is up to 16% release of histamine. For interest, my own result has been as high as 62%. I'm not sure if this is a new type of test and if it's a reliable MCAS indicator. I know the traditional MCAS tests are very problematic.
Hi Gez. Hope you are doing OK. Here in the NZ, in the Long Covid community, a lot of people are trying LDN (low dose Naltexone) Usually after having tried everything else.... What are your thought on this? Are you able to take a look at it from a medical/scientific perspective, as you have done so articulately with other potential treatments? It seems to be readily available with few major side effects.
Hey Alistair. I’ve not done a film on it because we don’t have much clear science yet, only theory. Anecdotal reports seem to suggest about half of long haulers benefit, half see no difference. This might be due to a mooted receptor difference in our biology - so it depends on how your body processes it.
I think viral persistence in the gut is what's going on with LC, for me at least. I was fully recovered for a year, got food poisoning and started LHing again. I got to 80% after 8 months and then a probiotic sent me back into the depths of LC hell. Gez, where's that video of you explaining Long Covid? The one where you said you broke a bone but would rather break a bone every week rather than get LC 😂 or something along those lines. I wanted to share that video.
Oh gosh I can’t remember which vid I said that in! It was my pelvis too, pretty important bone 🤣 Might be in the vid ‘What is Long Covid | 9 facts in 90 seconds’
Interested to know if you tried the Attomarker test? (Stephen - we met in Cyprus at the clinic). My own test result has consistently shown an abnormally high antibody level to the early covid variants, and the consultant says they have been seeing very encouraging results from Evusheld, so I'm about to give that a go.
That’s excellent news re the evushield - my attomarker results showed some room for intervention opportunities so will try those in due course. Can you get the Evushield in the UK or do you need to travel?
£1,500 for the pharmacy (they had it on the shelf!) plus Dr Astorri's fees, probably another £1,000 by the time you've had a consultation and been for the jabs.
Can I strongly recommend high dose Vitamin D. I’ve been on 10000iu per day since the beginning of March and am virtually back to normal now since my infection in 2020. I also supplement with fish oil (2 capsules per day).
This is sooo true! Started heavy dosing on vit d3 with k2 recently and have noticed that my symptoms has lessen plus recently i have added in nicotine which totally was a game changer. I normally i have neurological symptoms at night and ever since i incorporated nicotine mt neurological symptoms have tamee down significantly. I can also tolerate more foods now which i couldnt before.
Thanks. Quite interesting science around altering sulfide reducing bacteria composition in the gut with sodium thiosulfate (foto fixer...quite cheep :)) taken per os. Seems to be effective in the MCAS, histamine/antioxidant department. Worth looking into imho. Good luck.
this is spot on! USA here w Brit heritage, yes Interelated, have all u list, see 11 Drs who treat 11 body parts 😡.. 4years in, researched 2yrars, must self advocate, on histamine 1 (rotate them), also singular, hydroxyzine helps the most(rx), looking into methylyn blue.. biggest help was learning from Dr mandell(free daily podcasts, fla) natural massage ie pinch nose bridge, massage down ,+ away toward cheekbones, clears head vice/sinus, etc, .. interested in ldn, meth blue info, blessings for all u are + do 🙏💞
Might be better for me to just jump cut perhaps when I’m editing. It’s a no-no in real production land but no-one seems to give a shit in TH-cam land so perhaps I just need to get over myself 🤣
He's back! Hope you're doing OK Gez. The idea that immobilization, a.k.a freeze, is synonymous with a crash is interesting. Healthy people can freeze, but don't crash, right? I suppose it's when the sympathetic system burns itself out or is momentarily overwhelmed (possibly because the parasympathetic cannot counter it).
It’s not the only reason / cause for a crash (PEM is mostly an inflammatory reaction / metabolic energy crisis IMO), but it’s intertwined in the whole picture. And yes - immobilisation happens when sympathetic burns itself out.
@@RUNDMC1 yeah, I agree... I can precipitate a crash by stressing the sympathetic system out (eat the wrong food, stand for too long, exercise, and get hot but can't sweat) I think I feel the freeze prior to the onset of the metabolic/systemic/neuroimmune shutdown the next day
Interesting. I have MCAS and POTS. I find my POTS gets worse if I have had an infection. It takes weeks or longer to settle. I had what I believe was covid about 2/3 weeks ago and my heart rate has been thumping since. My resting heart rate up by over 10 bpm. That on Ivabradine! I didn’t do a test a I was away at the time but I had absolutely no taste or smell for days. Having said that I live in Scotland and am in Florida for a holiday. I find the heat really helps with the symptoms. I never considered it might make my heart race…….it’s been cooler today though and wet and I have spent lots of the day in bed and my heart is still racing and the palpitations would make your toes curl.. I hate the feeling! I suspect you know what I mean……unfortunately. Take Care. Claire 🤩
Good to see you again and catch up with all your “tips” - they are greatly appreciated! I’m still on H1 & H2 Antihistamines and take additional Piriton! lol. Recently had a set back - long story short, Bradycardia (caused by Covid) became a problem, my heart rate started dropping to low 40’s and was starting to dip into the 30’s again! I was sooooo exhausted - everything was a major effort (I was the “bunny without the Duracell batteries”!)😂. Anyway, on another medication now and I feel like I have Duracell batteries! 😉🤗😂😂 ….. (showing my age - for those in the UK!) lol. Best wishes to everyone.
@@Lewisss89 No. I only developed Bradycardia after Covid. So, it’s a relatively new concept/condition for me. My GP arranged a Holter monitor be fitted by the Hospital (48-72 hr period) to see what was happening. It showed that my average HR at that time was 38 and when I was sleeping it dropped 32. I was only sleeping for a few hours a day really, despite being so tired. As you’ve described you feel absolutely awful the next morning - as if you’ve been partying really hard all night (without the fun!) The result was the Cardiologist put me on some medication which increased my heart rate. I was taken off the medication last year and my heart rate started to drop again. So I’ve been put back on medication. Are you seeing a Cardiologist? The waiting list here was really long, so for my first appointment I paid to go Private! I know, it’s not good - but I couldn’t wait!! Good luck!
@@malaika2940 Thank you for answer. Yes I was. But I think my troubles are autonomic dysfunction. Because if I go to the bed oř on the floor my HR go down. If I stand up my HR go up. But I never had so low HR. Rest HR was 60+. On Holter the lowest was 36.
@@Lewisss89 I’m so sorry to hear you may have Autonomic Dysfunction. I almost feel fortunate that it was simply a case of my heart slowing down and stopping (if you see what I mean! 😉) Hopefully the Cardiologist can help with your Dysautonomia. I realise that is the major problem everyone is having with the condition (trying to find a solution to suit them). I’ve listened to Dr Tina Peers (although a Consultant in another area) she has done some amazing research and work into MCAS and Dysautonomia. Of course there are many leading experts in this field, however if I remember correctly (forgive my Covid Fog here!) her daughter has been affected and she has a personal interest in trying to find a solution. She certainly seemed determined! I sincerely hope you can find a solution to improve your HR and your lifestyle. There has to be something!! I look forward to hearing you are doing well and your HR is back to normal. Best wishes.
Good to see you again Gez, hows things? I find it so confusing with histamine, because sometimes I eat/ drink high histamine stuff (alcohol, fermented foods etc.) and am totally fine, and then at other points it seems to hit me like a truck. I feel maybe when my systems more on edge, the sensitivity arises. What antihistamines are you on for h1/ h2? Are the OTC or prescribed? Appreciate you!
Hi Gez i think my symptoms are more closer to Dysautonomia but could be overlapping a bit. Which videos should i check out? Got a bit confused on the description on which ones were for Dysautonomia my apologies. Also i was getting treatment for lyme disease as my doctor thought there was a link between covid and Lyme disease however after having the medication it doesn't seem to have worked. Wondered if you heard anything about that? Thanks for all your hard work. Really appreciate it.
Lots of complex crossover with Lyme - it’s a hard one to treat too. Have a look in the description for the links - the top ones are the dysautonomia ones.
Yeah also trying to manage my symptoms by fasting did lead to an unhealthy BMI. Be careful. It’s just hard to get enough nutrients with a struggling digestive system.
i've had exertion related hives (horrendous face and neck and swollen eyes) since a very mild infection in july. anitihistamines did nothing. do you know whether quercetin is worth a go?
Hiya Gaz, one of your followers since 2020/21. Hope you're well, or as well as can be. I think I ask you yearly, are you still on the medication or 'supplement stack' you once made? Also if we are taking H1/h2 life long, is there any evidence in damage to any vital organs for the extended use? Thank you again for all your work buddy!
Hi Jay, thanks for writing! Yes I’m still on the stack, and still on H1/H2. The hope would be that once we resolve the underlying illness we can come off it all - until then though the symptoms are too bad if I try. As for long term risks - none I’m aware of 👍
I did the maths and 1 lap around Saturns rings is about 1 year of running at average pace. I bought myself a medal and shirt and its waiting for me neatly folded and placed on a counter in my room, and i am not to touch it until im done with this. Im approaching lap 3 of my Saturn Ring Ultra. I suspect i will be retiring from ultrarunning after this, since i dont know how any race will ever compete with this lol.
I hope someone sees this. Please look into Fibromyalgia being the cause of long C! I FINALLY have a diagnosis after suffering for 3 1/2 years… 😒😑Only because I kept digging and telling the Dr’s what I wanted them to test me for! Do some research. It’s crazy how everything finally fell into place. Fibromyalgia is a result of a disregulated nervous system. Fix the nervous system, you can heal. ❤
Didn’t really mention endocrine or metabolic factors, or biome. Metformin has drastically improved my POTS including postprandial symptoms. I can eat more protein. I can eat a bit more if I want, I don’t have to eat as often to fit calories in (small meals often). I’m shocked at this improvement in HR because I’m taking it for glycemic-triggered migraine. Of course I’m extremely careful about what I eat but my cells or insulin or gut or something just isn’t handling nutrients well leading to massively disruptive symptoms from food. Even just macros. Have tried all trigger eliminations short of an elemental diet. Fasting helped but didn’t help MCAS that much after the initial switch to fat burning (environmental? Endogenous biome histamines?) and including multi day fasts. Fasting helps POTS fantastically. But apparently so does metformin. 🤷♀️ Thanks though for a clear quite easy to understand breakdown of the symptoms and associated triggers. The processes are more complex than I think anyone has grasped yet.
Gez - are you still taking Anti Histamines everyday ?? I find they help my symptoms a lot BUT I am scared to be on them all the time and getting tolerant to them and then when you try to get off they cause rebound symptoms and other complications and you have to wean yourself off them very very slowly although dr's will tell you this is not the case. What are your thoughts on using them ? Thanks heaps
@@RUNDMC1 thank u for sharing. Do you just take one per day ? Or more ? i seem to be heading down same road . Dr's here do not know abt MCAS . So incredibly difficult.
Just got covid again after 4 years. My long covid symptoms re-ignited, such as numbness in my hands and anxiety. My doctor put on Metformin which is one of the only meds I haven't tried yet. It comes with its own side effects, so its hard to tell what is the long covid or the meds. There is some research into Metrofrmin with Vit D for long covid. Have you heard of that med being used for LC? I'm hoping my long covid symptoms don't last as long as they did the first go around. I've already been on an antihistamines like Zyertec, which if I don't take it I have trouble sleeping. Doesn't help that a life situation is increasing my stress levels which makes my symptoms worst.
So sorry to hear of your reinfection :( Metformin is one of the very few drugs we’ve actually got decent evidence for in this scenario (helps reduce subsequent long covid) so hopefully you should come through this infection without any worsening of your baseline
@@RUNDMC1 Thanks Gez. I also took Paxlovid for 5 days after I got sick hoping that would help mitigate my symptoms. The worst was the metallic taste in my mouth. I was getting better, but then had a life situation throw me into deep stress which re-ignited my symptoms. So bad timing in that regard. I'm not liking being on the Metform (stomach issues, headache, etc.) general unwell feeling but if it can prevent me getting worse I'll try it for a month. Do you have any content on Metformin and LC?
Hello dr Gez, long time follower here, i hope this isnt inappropriate but you are one fucking handsome man! And I aint that way inclined 😅 have you been taking your NAC, Dandelion root, and vein vine? Cold showers help me a lot , thanks for your brilliant youtube channel. your good attitude will see you back at 100 percent. Be safe, later Gez!
Haha, thank you! I do have to point out that I am not a doctor though ☺️🤣 I’ve tried all of those - currently going in the opposite direction though and going cold turkey on all meds and supps 👍
I have gastroparesis as well as noblonger have ny gallbladder due to surgery. I CAN NOT have ANY tomato based ANYTHING. If I go to eat it it will BURN my mouth. Funny how I USED to be able to eat anything including spicy foods. Not anymore. And I now have NAFLD as well so NO ALCOHOL for me.
I can’t even take meds .. I react crazy to antihistamine H1 & H2 I’m trying NAD taking ox bile and digestive enzymes for digestion.. can eat a meal only easy eats .. mushy 😂
I after over three and a half years of having long covid, I finally got an actual long covid appointment. I was so excited to get answers, but it was a morning appointment and I don't really remember much of what went down except that I was really dizzy and didn't know what to say. I remember that I got even more blood tests, and that they are still just looking for other things it might be, including lyme desease because of that one time i was bitten by a tic 17 years ago. I feel really muddled up and upset from all that, but I got my notebook out while I watched and wrote some questions for when the doctor does the follow up call.
@MiniNymph in my personal experience, I ended having loads of blood tests and none of them came back with any indication of a problem and then by the time I saw a medical professional again, I had to explain everything over and over again. Eventually, I wrote a one page document, detailing all my symptoms - graded them on a pain scale of 1-10 in severity and detailed the regularity of crashes and after that, I just hand over the sheet for them to read for 2 minutes because there's not enough time in appointments to narrow it down and they nearly always want to investigate anxiety disorders, blood issues, gut issues, brain issues - it's an endless loop of investigation to eventually get to the same place. Good luck!
Gez how are you doing!? I hope you're still improving brother, you have been a true savior for our community!
Very kind of you! Had a slightly rough week but I’ve had enough of those to know a better one is around the corner :)
@RUNDMC1 nice to hear. How many percent would you estimate that you've recovered? Are you 80% back? Thanks. Would be nice if you could update us on your recovery.
I am now trialling 5htp eve and L-tyrosine morning and the results are astounding.
@@sgordon8123 hey mate, how do these help long covid symptoms? Thank you!
@@sgordon812311:17. Is that for insomnia? I don't wake up during the night but my circadium rythymn is backwards. I get more energy, brain fog goes away after dinner and so my brain does not calm down until 2am or later. Anyone else have this? It is sooo hard to get back on a regular schedule and I feel like I'm living in another world than everyone else.
Thanks again for all your work despite your condition. Each time I hope you would say you are cured, you deserve it so much ! From a 2020 long hauler who is following you since the beginning. ✨
Thank you Lise!
Same here 4 year anniversary yesterday. Not one to celebrate by any means.
@@kapaul1584 I’ll be there with ya next April, 2025. Absolutely miserable! 😩
Thank you for just being there when no one was. LC really hurt, id like you to be the first one to know that after 2.5 3 years my body feels fully heeled or as heeled as it could. It was so painful that it never really hit me that i couldve gone to sleep and never woken up the next day. This comment is not enough for the work you put in while dealing with LC aswell. I hope your all heeled and I really want you to know that youve done real good for thousands if not millions in this world.
What an incredible thing to hear - every time I hear about a long hauler getting better it’s the most incredible news. Thank you for all of your support and wishing you all the best for the future!
This is spot on to my experience.
Thank you, not only for this very helpful video but for everything you have done for the long Covid community.
Hi Gez, how are you? I regularly come back to check in on how you are, in the hope that you have made a full recovery.
I wanted to say thank you for being a beacon of hope for us long haulers, particularly in the early part of the pandemic when there was little information out there and like many I was scrambling around trying to find any answers!
Recently reached my 3 year Long Covid anniversary. I’ve gone from being totally bed ridden, to bed bound, housebound and now I can venture out 2-3 times per week. Total rest and pacing is what has worked for me, although I still have a long way to go. Take care
Hi Chuchu, thanks so much for writing. I’m so happy to hear about your progress. For the vast majority of us, pacing is absolutely key.
I’m not far off my five year anniversary now. Things are still pretty rough but I am hoping to have some positive news to share in the upcoming weeks.
I will be back on this channel, sooner or later!
And best wishes to you in your continued recovery :)
First wave, March 2020. I had MCAS and POTS BEFORE Covid (but they did not impact my quality-of-life noticeably).
Definitely have dysautonomia AFTER Covid. It DOES impact my life, particularly sleeping and temperature regulation.
I follow Gez closely; if ANYONE is going to get better / find a solution form those of us in the "first wave" I honestly believe it will be Gez.
And so far, it looks like he's coping well but not back to full health. 😢
You’re pretty much on the money there 😢
Coping well but not back to full health is such an accurate summary. Go team March 2020!
@@hannasizemore8028Same here!
Jab d8dnit for me. Lost vision right after then told Delta caused LTC nope I read Kansas vs Phizer. Now I have 13 specialists. Haven't worked in over 3 years
@maranclain830. WOW. ALSO LOST VISION AFER JAB ALONG WITH THROMBOCITOPENIA.
Thank you again, you helped so much 2/3 years ago when no one had answers.
Thank you!
@@RUNDMC1 I had hives all over, horrible anxiety, and exhaustion like I was going through radiation treatment again. I developed a new and severe allergy to dairy. My lips would swell. It was a scary time. It took 6/8 months for my body to start to settle down. My Doctor didn't know what it was. BUT said it could be long covid and treated me as such. I am the one who told her about blocking H1 and H2 , and a low histamin diet. I also took a cocktail of vitamins and supplements you recommended. Within days I started to feel better. Again, THANK YOU. I don't know what I would have done and how much more I would of suffered if not for your videos!! I was not alone !!!
@@MrsMac3099wow! So glad you managed to get on top of it :)
@@RUNDMC1 again you have helped so many people. In the US no one was talking about long covid when you where trying to figure it out! I shared your videos with others.
@@MrsMac3099 what did you take exactly?
Gez, how are you doing man? Great to see you back!
Thanks! I’m bumping along :)
OMG, you touched something in this video that I have been trying to explain to doctors to no avail unfortunately !!!!
Hey Gez-thank you as ever! I have both (of course 😂). For those of us who menstruate the dead giveaway for MCAS is the once a month symptom flare-discussed in your video with Dr Tania Dempsey. I first found out about using HRT to ameliorate this from the husband and wife team Drs Sarah and Paul Glynne. I have seen over the last couple of years that GPs and LC clinics are partially catching on to this, it’s a low hanging fruit for treatment!
Thanks again for your content mate, hopefully your recovery is moving forward. I recently found a pot of miso soup with added ginger, turmeric, garlic and black pepper gets me back to baseline from pots and mcas symptoms pretty reliably, and is also quite tasty if you like that kinda thing!
I haven't finished watching yet but pretty excited to share that I did a 5 day supervised Water-only fast 5 weeks ago and have completely resolved my LC (16 months). I have my life back. Edit to include that I eat wholefood plantbased diet since 3 years ago, very clean with no chemicals. Not sure if the Fast worked better or not because of that
Very happy to hear that!
Wow. After 5 days? What symptoms did you have? Thank you 🙏
@Lewisss89 Hi Lewis Post exertional malaise, what I called concrete in my muscles, crippling fatigue after any effort. I've been back at work as a Delivery Driver for 3 weeks, amazing!
@RUNDMC1 Well thank you for being with me on this journey, your discussion of mitochondrial function was what eventually put me on the path to doing a Fast. Great book BTW also
@@ThylakoidsRGo Thank you for answer and I am happy for you 🙏🍀
I’ve been coming back every 6 months and hoping that you’ve finally recovered, Gez.
I’ve been following since Sep 2020 as I have been going through a long term illness equally as torturous (protracted antidepressant withdrawal syndrome), that was originally mis-diagnosed as post-viral fatigue. Hopefully one day I’ll come back here and you’re better, and I am too.
Keep fighting.
Thank you - I really appreciate the support 😊
These videoes are a huge help Gez. Thanks so much!
00:06 Understanding the complex interaction between MCAS & dysautonomia
01:38 Long Covid can lead to prolonged fight or flight response
03:05 Identifying MCAS and Dysautonomia symptoms and triggers
04:35 Testing improvement through antihistamines and diet changes for MCAS
05:57 Identify and manage MCAS and dysautonomia for better quality of life
07:16 Alcohol's unexpected effect on heart rate and symptoms
08:32 Digestive disruptions impact sleep and health
09:52 Symptoms overlap between MCAS & Dysautonomia, crucial to identify triggers.
Crafted by Merlin AI.
Thank you so much, ive had lc since March 2020, and then got the JJ in 2021 and was immediately super ill. I had to get it to travel for my brother's funeral. The myriad symptoms are so unbelievable, i really don't think anyone not suffering with them can understand how much we go through daily, since we get 'used' to it, and mask our symptoms when around others. Just digestion is a task! I went full carnivore, which definitely helps, but my family and friends seem to think ots e treme, when they don't have a clue the cascade of pain and lack of sleep eating can cause if it triggers you. I appreciate all that you do, it helps to not feel alone, although i wish noone was suffering as well. Methylene blue, natto, taurine, glycine, vit d3 k2, l cysteine, astanxthin, cod liver oil. Iverme ctin , i use it all in hopes to help my mitochondria and clear the spike. It is just so much and doctors are of no help.
Sorry you are suffering like the rest of us. Thanks for sharing what you are taking. I keep trying what works for others, in hopes I can find what will work for me.
Авидность цитомегаловируса какая?
Gez- your contributions to the world of Long Covid is greatly appreciated!! Just shared this with my cousin who is newly diagnosed with chronic fatigue and Long Covid.
The A-team ref made me laugh. As always very informative and well thought out. thank you for what you do.
It was a very niche reference for those out there who remember that 40 years ago it was always on ITV at 5.15pm on a Saturday evening!
Thanks Gez. This is a GREAT film to help me and other folks dissect the causes of our symptoms. Very CLEAR and HELPFUL!!
It’s a pleasure!
How are you doing? Would love an update video on your health and what’s been helping
There will be a video update on exactly that in due course!
Thank you again... and again... Your description of symptom clusters and triggers is spot on to my experience. No doctors or specialist can comprehend what you are presenting... it makes no sense to them contradicting what the Hippocratic oath means when they treat the symptom as if it were something else they are triggering new clusters of symptoms. Sadly your content is severely limited to only the tip of the iceberg. You know there is a greater monster lurking in the depths waiting to erupt from your guts suddenly manifesting multiple symptoms like "Don't trust that fart" "How long ago did I pee my pants?" 'Spastic twitch dancing" "stiff brain" "Head on crooked" "Stick through brain" "conversational gut gurgling" "honkey spleen" " "sudden kick to the balls"... and the every ones favorite "Human Puddle" These are just a few nick names I give my symptoms. I attempted to catalogue and date the symptom clusters at first but it was so much so often it was debilitating to recall all those events so I gave up journaling as too hard and just the memory of the conditions trigger relapse. Eating food is a necessary evil I try to limit the hours my gut is occupied with digestion. It doesn't seem to matter what I eat... every thing triggers something. So I fast daily one meal and skip a day now and then. It doesn't kill me to go skiing so I hope to return to work full time instructing.
Thank you so much for continuing to help us understand this. I wouldn't have been able to be in this situation without you videos, book, etc.
Thank you Angela!
Thanks as always Gez.
I think it's also worth pointing out that you can just be histamine intolerant (i.e. not process histamine well, DOA can help with this) but not necessarily have MCAS.
So an allergist has told me about my condition at least.
I would also advise going gluten free if someone has dysautonomia and reducing carbs, this has been my biggest help
Good advice - thank you!! Re anyone googling as a result - note the typo re DAO enzyme 👍
Thank you Gez. My GPs are pretty clueless. I point them to your videos and book.
Thank you for your continued work for long covid support! I have MCAS as part of my long covid and antihistamines have made an enormous difference to my overall levels.
A histamine free diet, fasting, H1 and H2 antihistamines have been my ticket to a 95% symptom free life, thanks to the interviews, research, and wisdom on this channel. There's a lot to it, but I'm 4.5 years into long haul COVID, and there's no room for being complacent, or stagnant if one is going to participate in life.
What types and dose H1 and H2 ? Thank you.
Could I ask why fasting has been helpful?
how do you manage reinfection?
@@gerberdaisies Zero histamine ingestion, lower MCAS burden since no eating etc. during the fast.
So the antihistimes helped..am thinking on trying them this week. Ty
I have both. Its been hell working with both trying to get better. Thanks for the video.
Hi Gez. I have confirmed MCAS (We talked a bit on Facebook about it, I am Diego from Spain). I have good reasons to believe that the Dysautonomia is secondary to MCAS, I believe that I have a mechanism and a mitigation for it.
What I believe happens:
1- First the mast cells activate in the gut.
2- Once the mast cells activate and release histamine and other inflammatory stuff they trigger inflammation and often diarrhea (I believe that sometimes there is fluid resorption later so you may not always see it , just get bloated an later the bloating goes away and then you pee a lot).
3- Both inflammation and diarrhea require sodium to drive the water there. Particularly diarrhea can use a ton, losing 2L though there can mean losing 20 about grams of salt (I have lost that in a single go...).
4- That triggers some hyponatremia and a low blood volume.
5- The low blood volume is behind the POTS like symptoms.
6- The hyponatremia combined with the low blood volume is a huge stressor that puts the autonomic system into overdrive (Trying to keep blood pressure up, oxygen and nutrients reaching the tissues).
If things happen like I believe they do, there is one mitigation that would improve things acutely. Salt+water. I know that In my case it does. I also know that there are studies for pots showing that adrenaline halves right after having salt and that large volumes of IV saline are used as POTS treatment.
What I do and helps a lot is dissolving 5g of salt in a glass of water and drinking it, following it with as much fresh water as I want. If things have been beyond terrible I may need to repeat that (waiting at least 1h if not 2, as too much salt sends me back to the toilet) but a huge improvement is seen within 30 minutes.
An useful way of knowing when to do the salt in a more proactive way is tracking heart rate. I know that if I am at 100 or more resting (65 to 70 is what I have if everything is 100% fine), even if I am not feeling terrible yet, I will soon and having salt then will lower that heart rate and avoid it. Specially if I am going to sleep even near 100 (95 is enough to prevent me from sleeping), I won't be able to. I will fell hot, sweat, the legs will hurt. If I wake up, have salt and go back to bed, then I will sleep.
Another reason to think that MCAS drives it, is that MCAS meds have reduced my need to do the salt in water thing by a lot and every MCAS intervention that helps , also lowers significantly my resting heart rate.
I would love to hear if Gez or anyone tries having salt to help with the symptoms. One caveat, if you believe that you are about to have diarrhea, wait until it is done or it will likely trigger it to happen and go right trough you.
Although I also know that exercise can directly trigger my MCAS symptoms with no antigen involved so I also believe that there is some sort of loop that the autonomic system may be signalling the mast cells to go nuts.
By the way you made a small mistake, mast cells are not in the blood. They circulate as their progenitors and mature to mast cells once embedded in the tissues. That is one of the reasons why MCAS symptoms are so diverse, it depends on where the ones that are reacting are and one of the reasons why it is hard do diagnose.
Great comment - and yes some poor script editing from me there. Mast cells are white blood cells not commonly found in circulation!
@@RUNDMC1 It was just a minor mistake, the video was great and any divulgation about MCAS/dysautonomia and long Covid is a good thing.
My belief is that most long Covid cases are different MCAS manifestations (even the blood clotting issues as mast cells produce heparin and the body might just ramp up the clotting to compensate so when the mast cells calm for a while you get more clotting than expected).
I also hope that this will eventually led to better treatments being discovered as current MCAS treatment leaves to be desired but with so many people with LC they will eventually have to put resources into solving it.
Which MCAS meds do you take? H1/H2, Ketotifen, or cromolyn. I also notice salt helps while I’m in a flair.
@@eruiluvatar236yes but I can’t bear technical mistakes! Thank you for pointing it out. I have now added a correction subtitle to the appropriate point in the video :)
I have histamine intolerance and POTS, and respond well to salt+fluid loading; I believe fludrocortisone has helped me in the same way, but it requires caution if blood pressure is high at all and monitoring of blood electrolyte levels. Also agree that too much salt+fluid can be... disruptive.
FWIW I have 1l of water with 4g salt before getting out of bed and another 1l shortly after.
So happy to see you again Gez 🎉 keep up the good work
Gez have you seen the latest research about spike proteins turning fibrin 'toxic' being the apparent root cause of everything? (and a treatment for it in the works). It feels like a significant development but because it was only published last week most people aren't aware of it yet. Could make for a good future video
Yes this work is an extension of what Prof Pretorius research has previously found. It’s more evidence for an existing theory/mechanism, rather than changing the game IMO.
And obvs there are many mechanisms at play - this is a very complex puzzle!
Where can I find this research, could you share the link with me please?
@@QUIZBIBLICOJ33 It doesn't let me share links. Google: Fibrin drives thromboinflammation and neuropathology in COVID-19 and you'll find the paper
Thanks Gez, for your research and experiences with LC, you continue to help me and others. I’m currently in an energy crash, and seeking answers still...
Emm great info I can see a mix of these symptoms in myself particularly after a hot bath, I'm dizzy and have time lie down a time. Whats real killer is my last crash was March I've been exercising like a champion 30,40 hrs overtime absolutely flying and now wallop everything tumbling, gutted
So good seeing you Gez!
Dear Gez,
Firstly a big thank you for writing the long covid handbook, it’s been hugely helpful and made me feel less alone in what I’m going through. I was wondering if there was a long covid research charity you could recommend?
Also I’ve had long covid for 4 years and I would like to do what I can to speed up the process for finding a cure. As you are in communication with many experts I was wondering what can be done to help? Funding? Pressure on the government? Change in legislation? Although I obviously have limitations in what I can do due to being unwell I would like to do what I can to help. There are so many people with long covid, if we could all be mobilised to help it would have a huge impact and also boost peoples’ morale by feeling like we have a focus and we’re working together for the greater good.
Looking forward to hearing from you
Hi, thanks very much for your message :) There are large activist groups already for LC, and they’re doing cracking work. However it’s very difficult to change the research agenda as it requires political will. There is still quite a bit of good research happening at the moment, but unfortunately good science takes time and patience is hard to come by when you’re suffering as much as we all are! Keep your eyes peeled for possible announcement of BC007 first stage trial results next month 👍
Thank you Gez. I am largely out the other end of MCAS thankfully but still get dysautonomia with a bad crash. For me the key to tackling MCAS was avoiding VOCs, having FIR saunas to get rid of pesticide (lindane), and avoiding foods which were the worst triggers. I also found colonics v helpful and herbs to help with phase II liver detox. Interestingly, once things had stabilised a little, I tried eating tiny amounts of foods which had triggered MCAS and was able to gradually reintroduce things like bell peppers, tomatoes and soft fruit. I would eat a piece of bell pepper of about 1cm sq. and leave it at that for a few days. It seemed to work.
Good studies etc have Dr. Hauser about MCAS/POTS/hEDS... I have super painfull and cracking joints and stiff muscles, LC since 2020. Still I think veins and clotts are the key.
Thank you. You have been a huge help
So nice to see a new video from you! I agree these two conditions are most commonly involved the long Covid equation . It wasn’t until I was diagnosed with hypermobility, pots and MCAS (the trifecta) was I able to make any meaningful improvements after my initial 2020 infection.
Good to see you again intermittent fasting helps me a lot
1. short fasts of even 24 to 36 hours will increase cortisol levels, which therefore increases parasympathetic activity.
2. unlike immunoglobin E allergies, immunoglobin G reactions can take much longer than 30 minutes to manifest. sometimes over 24 hours.
3. increased cortisol and adrenaline levels will trigger mast cell mediators, which are vasodilators, which therefore increase orthostatic intolerance and tachycardia, which in turn further increases catecholamines and cortisol levels, and the positive feedback loop continues
4. you may need more than one week to notice symptom improvement with a low histamine (and possibly low salicylate) diet. try 12 weeks, but track your micro nutrient intake and blood work done to make sure you aren't consequently low on any vitamins or minerals, and to ensure you are consuming enough protein and healthy fats
5. there's likely physical damage to your endothelium, which may not be entirely self resolving. compression stockings and ample hydration and electrolytes are essential to help prevent blood from pooling from the damages veins in your legs.
6. i'm probably a little wrong about some of this. MCAS and POTS (and PEM, which is to do with mitochondrial dysfunction) are relatively new conditions for me, but i have seen improvements since march (tho mostly plateauing since july)
My cortisol is super low in the morning. Some types. Thank you.
Thank you for all the good info Gez, that you bring to us. I am glad to see I'm getting more notifications from you. Missed you and ŵas worried you'd gotten worse. All the best to you and to your health being 100%. I have also been following you from the beginning beginning. You don't know how much it means to be validated thru your experience and knowledge as those who are normal just can t relate.
I know all about that normal people relating issue 😣
Definitely relate to the temperature regulation issue.
Love what you said here Gez especially on autophagy. It’s a little bit like people thinking (like myself) the mind body heals and perhaps it does - but in reality meditation etc just increase Vagal tone so above all it’s like using yoga Nidra to put out Autonomic fires. Hence exercise is just too much as we can’t undo the inflammation from it quick enough to get back above water
This video is very interesting. I don't have long covid. I have some autonomic system dysregulation stemming from an adverse reaction to Humira in 2106 which caused all this nerve damage.
Thank you Gez, so very much! Your videos are always helpful. It’s nice to know I’m not alone in this shit! I’m sorry you’ve suffered for so long. I got Covid in April 2021 and it’s now Sept 2024. I am so way over this, sometimes I just wanna end my days. I have chronic lung issues. Coughing up and blowing out tons of mucus all day. Severe congestion, sneezing, watery eyes, still don’t have my taste and smell back. Absolutely miserable!! GI symptoms fluctuate between constipation and diarrhea and normal-ish. Brain fog, fatigue and insomnia. Before bed every night I take my rescue inhaler, then my long acting inhaler, Benadryl, CBD and melatonin. 🤦🏻♀️😮💨
I am looking into the possibility that I may have a parasite infection. One that’s been brewing for probably at least a couple decades! I think Covid may have set it off. I made my GP test me for ova and parasites in April 2022. Of course their test came back negative because they’re so flawed. It was always in the back of my mind. I will be starting a parasite cleanse tomorrow using Ivermectin and Fenbendazole.
There are some articles out on long Covid being linked to a parasitic infection. Very interesting, and makes sense why this isn’t lame stream news. They would have to eat their words about how we ALL should’ve used Ivermectin from the start!
Love your channel!
Please, be well! ❤️
I recently tested positive for Barella, so going after that with antibiotics. We’ll see whether it makes a difference!
@@RUNDMC1 Are you talking about Borrelia, like the Lyme co-infection? Do you think you’ve had it for a while?
I’ve heard cats claw, Chinese skullcap and wormwood are good for that. If the parasite cleanse doesn’t help I’m going to do those. I wish you the best! We’ve suffered long enough. 😔❤️
@@leannshort2211yes - sorry, exactly. Autocorrect threw a spanner in the works there!
@@RUNDMC1 Lol no worries, I knew that’s probably what you meant! 😉
I meant to add black walnut to my comment also. I hope you get relief with antibiotics.
I went to Germany in April this year to see a professor, 3 x doctorate in biological dentistry. He removed a couple of root canals in the back of my mouth and cleaned out wisdom teeth cavitations from when I had my wisdom teeth removed 20 years ago when I was 20. I had read about the chemokine RANTES and how it affects your immune system, cause cancer and all sorts of autoimmune issues.
I was hoping to feel an improvement in my health by now. Not so. I mean, it could take 6 months or more for Mast cells to calm down, so we will see I guess. Pretty disappointed because it was not cheap! My husband and I have spent close to 100 k over the past 3 years of being sick to get to the bottom of this. I just keep thinking Covid brought up all this latent crap in my body, and now it’s like putting a puzzle back together to figure out which piece fits where. 😔
Thank you for your content tho and work in striving to get better, and get us ALL better! ❤️
Gez how are you??
I FINALLY have a diagnosis for Fibromyalgia! That’s what this has been all along!
However, Covid set it off. I had weird nuisance sinus issues for 15+ years before Covid. Getting Covid only made everything worse. Please look into that. Fibromyalgia could be what long Covid actually is! 😣
My nervous system has been disregulated my whole life evidently. I suffered from childhood trauma for 9 years.
There’s also a genetic aspect to it, which both my parents suffered from trauma as well. You can pass this on to your children! Both my son and daughter experience some Fibromyalgia symptoms, so I will be helping them as well.
I need to eat an anti inflammatory diet and really work on my nervous system.
I am going to start seeing a Somatic exercise therapist to help to regulate my nervous system. Mindfulness, breathing exercises, stretching and strengthening really help. Maybe one day I’ll be able to hike again…. 😔🤞🏻
Just thought I would throw this out there for anyone wanting to look into the possibility of long Covid being Fibromyalgia. We WILL get better!!
❤❤
Ty for this…been suffering with both most of my life.
Thank you Gez! All your videos are helpful and artfully put together. Sorry you’re still struggling! As boring as it looks (and like we need something MORE dull when managing LC - 2yrs now for me), I reckon I’ll give the low histamine diet a go. I wish I could just yoga nidra & meditate my way to health instead…
I am on the topic too. Looking into thymus peptides and Cerebrolysin. Also there is often an imbalance between copper and zinc, mainly copper deficiency and normal or high zinc levels because people often supplement zinc without regarding copper. That can increase histamines (for example DAO is a copper enzyme)
@Larsonaut Interesting I’ve been having horrible neuro endocrine problems for yrs and I can’t get my thymus checked. Wld u pls elaborate? U may have just helped me ALOT! ❤ I can’t even travel bc I can hardly eat many foods.
@@Southerngrl Thymus peptides are for getting the immune system modulated. Downregulate autoimmunity and upregulate the “healthy” immune system. They are more experimental. Cerebrolysin are nerve growth factors to heal and regulate the nervous system. Copper is one of the often overlooked micronutrients to regulate a lot of pathways like immune system, nervous systems, metabolism, hormones etc. But it is highly recommended to test it before via hair analysis
@@Larsonaut very interesting. I have had some rly bad neuro endocrine type symptoms. Also, suspicious of copper overload but I’m in the US and the traditional medical model is failing me. I’m almost sure I have thymus issue’s bc of my diagnoses but no dr will look further as of now. It’s lead to a very hard way to live for me. So I appreciate ur info sharing. How do you go about getting this said “hair test.” I am on a limited diet, have had to get a hysterectomy, thyroid is constantly reving up, immune systems considered “compromised” and now have underlying auto immunity issues. Tysm
How do you (and people) with LC, protecting vs. reinfection, live their lives in public spaces these days? Do you still avoid live interactions and always mask in public? And wipe down all packages?
I don’t worry about fomite transmission, but I do still mask in busy public spaces, and avoid certain places and activities altogether.
Gez, I'm so grateful for your videos. I wonder if you have ever tried hypnosis from a practitioner. My MCAS came on so fast after covid. I feel like it should go away just as Fast, like I need to trick my body lol. Also I wonder if you would possibly put up a video of what you eat in a day. Just like typical foods. I realize everyone has different triggers but It would be interesting to. Know how you navigate basic nutrition Impossibly what and when you take your supplements. Just a thought if you feel up to it. MCAS Is a lonely road.Thank you for sharing your journey!
I get a horrible headache every day at work because of visitors wearing perfume and also dust and perhaps some mold. I don't take antihistamins bc I read that they are bad for your gut microbiome? But while other long covid sympthoms have improved a bit over the years, this one has almost gotten worse unfortunatelly.
Anyway, thank you so much for this, I have missed your videos, please keep making them if it brings you joy, bc we do need them 🙏❤️
I wouldn’t be avoiding antihistamines for gut biome reasons! Especially if you’re suffering that much.
@@RUNDMC1 ok, thank you for your input, might give it a try ✨ Hope the right kind are over the counter here in Sweden
Hi Mialin, I do well with Allegra once per day at 180mg. No grogginess or hyperactive nervous system. Hope you get better!
@@lauragott2122 thank you so much ❤️
How are you doing Gez? What are you eating these days? Brown rice? I've had some success with brown rice recently
Still on a low histamine diet - but going to be making a video on this subject next, as there’s some stuff I want to share, but want to get some more time in the bank first 👍
I would love to see an interview with Dr. Sanil Rege about his TH-cam video titled
“The Hidden Link in Chronic Fatigue, Long Covid and POTS. A deep dive into the role of the brain”
Hi Gez!! Just curious if you ever tried nicotine patches for long COVID?
Yep - helps me get through rough patches but you can crash on the other side. It’s a sticking plaster IMO!
Do you have any info on elevated IgG4 and what to do about it? Mine became high months after first covid infection and keeps increasing.
My Immunology consultant has been doing a regular blood test where my blood serum is separated and mixed with the blood cells from four healthy donors. The mast cell histamine release is then measured. A healthy result is up to 16% release of histamine. For interest, my own result has been as high as 62%. I'm not sure if this is a new type of test and if it's a reliable MCAS indicator. I know the traditional MCAS tests are very problematic.
Very interesting!
Hi Gez. Hope you are doing OK. Here in the NZ, in the Long Covid community, a lot of people are trying LDN (low dose Naltexone) Usually after having tried everything else.... What are your thought on this? Are you able to take a look at it from a medical/scientific perspective, as you have done so articulately with other potential treatments? It seems to be readily available with few major side effects.
Hey Alistair. I’ve not done a film on it because we don’t have much clear science yet, only theory. Anecdotal reports seem to suggest about half of long haulers benefit, half see no difference. This might be due to a mooted receptor difference in our biology - so it depends on how your body processes it.
I think viral persistence in the gut is what's going on with LC, for me at least. I was fully recovered for a year, got food poisoning and started LHing again. I got to 80% after 8 months and then a probiotic sent me back into the depths of LC hell.
Gez, where's that video of you explaining Long Covid? The one where you said you broke a bone but would rather break a bone every week rather than get LC 😂 or something along those lines. I wanted to share that video.
Oh gosh I can’t remember which vid I said that in! It was my pelvis too, pretty important bone 🤣
Might be in the vid ‘What is Long Covid | 9 facts in 90 seconds’
Why would the probiotic do that?
@@Eliokd leaky gut + viral persistence led to viral herx reaction
There is also the weird overlap between MCAS and histamine intolerance (HI). Basically HI is MCAS, but just for food.
Yep!
Interested to know if you tried the Attomarker test? (Stephen - we met in Cyprus at the clinic). My own test result has consistently shown an abnormally high antibody level to the early covid variants, and the consultant says they have been seeing very encouraging results from Evusheld, so I'm about to give that a go.
That’s excellent news re the evushield - my attomarker results showed some room for intervention opportunities so will try those in due course. Can you get the Evushield in the UK or do you need to travel?
Evusheld is available from Dr Elisa Astorri on Harley St
£1,500 for the pharmacy (they had it on the shelf!) plus Dr Astorri's fees, probably another £1,000 by the time you've had a consultation and been for the jabs.
Can I strongly recommend high dose Vitamin D. I’ve been on 10000iu per day since the beginning of March and am virtually back to normal now since my infection in 2020. I also supplement with fish oil (2 capsules per day).
This is sooo true! Started heavy dosing on vit d3 with k2 recently and have noticed that my symptoms has lessen plus recently i have added in nicotine which totally was a game changer. I normally i have neurological symptoms at night and ever since i incorporated nicotine mt neurological symptoms have tamee down significantly. I can also tolerate more foods now which i couldnt before.
One more thing when i added ginko biloba as well it has helped me soooo much!
Agree it’s good but even trying 40000iu isn’t cutting it for me. Proper sunshine however that’s a game changer after a few days
This was really interesting, thank you
My pleasure Rachel!
Thanks. Quite interesting science around altering sulfide reducing bacteria composition in the gut with sodium thiosulfate (foto fixer...quite cheep :)) taken per os. Seems to be effective in the MCAS, histamine/antioxidant department. Worth looking into imho. Good luck.
Great stuff as usual
Thanks James!
Gez how do you know test for mcas Was just thinking about it …💙👊
Watch the video I made with Dr Lawrence Afrin - the short answer is it’s really hard and often inconclusive.
this is spot on! USA here w Brit heritage, yes Interelated, have all u list, see 11 Drs who treat 11 body parts 😡.. 4years in, researched 2yrars, must self advocate, on histamine 1 (rotate them), also singular, hydroxyzine helps the most(rx), looking into methylyn blue.. biggest help was learning from Dr mandell(free daily podcasts, fla) natural massage ie pinch nose bridge, massage down ,+ away toward cheekbones, clears head vice/sinus, etc, .. interested in ldn, meth blue info, blessings for all u are + do 🙏💞
Love the A Team reference! Love your vids but this one had a few too many zoom cuts for my visual tolerance level - just an observation.
Might be better for me to just jump cut perhaps when I’m editing. It’s a no-no in real production land but no-one seems to give a shit in TH-cam land so perhaps I just need to get over myself 🤣
@@RUNDMC1 😂
Thanks for the video Gez ✌️
My pleasure :)
Thanks for your help great video! I'm reluctant to try fasting as I'm trying to gain weight but will try altering the diet.
He's back! Hope you're doing OK Gez.
The idea that immobilization, a.k.a freeze, is synonymous with a crash is interesting. Healthy people can freeze, but don't crash, right? I suppose it's when the sympathetic system burns itself out or is momentarily overwhelmed (possibly because the parasympathetic cannot counter it).
It’s not the only reason / cause for a crash (PEM is mostly an inflammatory reaction / metabolic energy crisis IMO), but it’s intertwined in the whole picture.
And yes - immobilisation happens when sympathetic burns itself out.
@@RUNDMC1 yeah, I agree... I can precipitate a crash by stressing the sympathetic system out (eat the wrong food, stand for too long, exercise, and get hot but can't sweat)
I think I feel the freeze prior to the onset of the metabolic/systemic/neuroimmune shutdown the next day
Interesting. I have MCAS and POTS. I find my POTS gets worse if I have had an infection. It takes weeks or longer to settle. I had what I believe was covid about 2/3 weeks ago and my heart rate has been thumping since. My resting heart rate up by over 10 bpm. That on Ivabradine! I didn’t do a test a I was away at the time but I had absolutely no taste or smell for days. Having said that I live in Scotland and am in Florida for a holiday. I find the heat really helps with the symptoms. I never considered it might make my heart race…….it’s been cooler today though and wet and I have spent lots of the day in bed and my heart is still racing and the palpitations would make your toes curl.. I hate the feeling! I suspect you know what I mean……unfortunately. Take Care. Claire 🤩
I do know exactly what you mean - so sorry to hear this Claire :( Wishing you the best and a speedy recovery (back to baseline at least) 😊
Good to see you again and catch up with all your “tips” - they are greatly appreciated!
I’m still on H1 & H2 Antihistamines and take additional Piriton! lol.
Recently had a set back - long story short, Bradycardia (caused by Covid) became a problem, my heart rate started dropping to low 40’s and was starting to dip into the 30’s again! I was sooooo exhausted - everything was a major effort (I was the “bunny without the Duracell batteries”!)😂. Anyway, on another medication now and I feel like I have Duracell batteries! 😉🤗😂😂 ….. (showing my age - for those in the UK!) lol.
Best wishes to everyone.
Did you have bradycardia all the time? My HR Is super low if I am in the bed... 45-50 :/ ( terrible morning like after party)
@@Lewisss89
No. I only developed Bradycardia after Covid. So, it’s a relatively new concept/condition for me. My GP arranged a Holter monitor be fitted by the Hospital (48-72 hr period) to see what was happening. It showed that my average HR at that time was 38 and when I was sleeping it dropped 32. I was only sleeping for a few hours a day really, despite being so tired.
As you’ve described you feel absolutely awful the next morning - as if you’ve been partying really hard all night (without the fun!)
The result was the Cardiologist put me on some medication which increased my heart rate.
I was taken off the medication last year and my heart rate started to drop again. So I’ve been put back on medication.
Are you seeing a Cardiologist? The waiting list here was really long, so for my first appointment I paid to go Private! I know, it’s not good - but I couldn’t wait!!
Good luck!
@@malaika2940 Thank you for answer. Yes I was. But I think my troubles are autonomic dysfunction. Because if I go to the bed oř on the floor my HR go down. If I stand up my HR go up. But I never had so low HR. Rest HR was 60+. On Holter the lowest was 36.
@@Lewisss89
I’m so sorry to hear you may have Autonomic Dysfunction. I almost feel fortunate that it was simply a case of my heart slowing down and stopping (if you see what I mean! 😉)
Hopefully the Cardiologist can help with your Dysautonomia. I realise that is the major problem everyone is having with the condition (trying to find a solution to suit them).
I’ve listened to Dr Tina Peers (although a Consultant in another area) she has done some amazing research and work into MCAS and Dysautonomia. Of course there are many leading experts in this field, however if I remember correctly (forgive my Covid Fog here!) her daughter has been affected and she has a personal interest in trying to find a solution. She certainly seemed determined!
I sincerely hope you can find a solution to improve your HR and your lifestyle. There has to be something!!
I look forward to hearing you are doing well and your HR is back to normal. Best wishes.
So helpful! Thank you
Good to see you again Gez, hows things? I find it so confusing with histamine, because sometimes I eat/ drink high histamine stuff (alcohol, fermented foods etc.) and am totally fine, and then at other points it seems to hit me like a truck. I feel maybe when my systems more on edge, the sensitivity arises. What antihistamines are you on for h1/ h2? Are the OTC or prescribed? Appreciate you!
I’m on fex and famotidine.
That’s the other thing with all this - it doesn’t happen in a vacuum. Reactions are never quite the same!
Have you tired the carnivore diet? I’m on only red meat and water diet right now, I’m feeling like almost normal been long hauling for 1.6 years
Can’t tolerate it unfortunately!
Iceland's lamb casserole chunks keeps me sane, but i miss fermented food so bad still
Hi Gez i think my symptoms are more closer to Dysautonomia but could be overlapping a bit. Which videos should i check out? Got a bit confused on the description on which ones were for Dysautonomia my apologies. Also i was getting treatment for lyme disease as my doctor thought there was a link between covid and Lyme disease however after having the medication it doesn't seem to have worked. Wondered if you heard anything about that?
Thanks for all your hard work. Really appreciate it.
Lots of complex crossover with Lyme - it’s a hard one to treat too.
Have a look in the description for the links - the top ones are the dysautonomia ones.
Yeah also trying to manage my symptoms by fasting did lead to an unhealthy BMI. Be careful. It’s just hard to get enough nutrients with a struggling digestive system.
@StaringCompetition I agree, it's important to find supervision from a professional who can assess your suitability for longer fasting
Montelukast is a Leukotriene receptor antagonist. I think you meant Cromolyn, which is another mast cell stabilizer.
i've had exertion related hives (horrendous face and neck and swollen eyes) since a very mild infection in july. anitihistamines did nothing. do you know whether quercetin is worth a go?
If antihistamines didn’t do much then I doubt quercetin will
Have you noticed niacin helping at all with any symptoms its very safe to try from what i gather.
Some people respond really well to it 👍
@@RUNDMC1 ok thanks for the reply
Hiya Gaz, one of your followers since 2020/21. Hope you're well, or as well as can be. I think I ask you yearly, are you still on the medication or 'supplement stack' you once made? Also if we are taking H1/h2 life long, is there any evidence in damage to any vital organs for the extended use?
Thank you again for all your work buddy!
Hi Jay, thanks for writing!
Yes I’m still on the stack, and still on H1/H2. The hope would be that once we resolve the underlying illness we can come off it all - until then though the symptoms are too bad if I try.
As for long term risks - none I’m aware of 👍
I did the maths and 1 lap around Saturns rings is about 1 year of running at average pace. I bought myself a medal and shirt and its waiting for me neatly folded and placed on a counter in my room, and i am not to touch it until im done with this. Im approaching lap 3 of my Saturn Ring Ultra. I suspect i will be retiring from ultrarunning after this, since i dont know how any race will ever compete with this lol.
Thank you Gez.
Thanks Jeffrey!
I hope someone sees this. Please look into Fibromyalgia being the cause of long C!
I FINALLY have a diagnosis after suffering for 3 1/2 years… 😒😑Only because I kept digging and telling the Dr’s what I wanted them to test me for!
Do some research. It’s crazy how everything finally fell into place. Fibromyalgia is a result of a disregulated nervous system. Fix the nervous system, you can heal. ❤
Lots of crossover on the Venn diagram between fibromyalgia and LC. Wishing you the best in your recovery Leann!
@ Thank you Gez, you as well. Thank you for all your hard work in research and interviews! ❤️
Didn’t really mention endocrine or metabolic factors, or biome.
Metformin has drastically improved my POTS including postprandial symptoms. I can eat more protein. I can eat a bit more if I want, I don’t have to eat as often to fit calories in (small meals often). I’m shocked at this improvement in HR because I’m taking it for glycemic-triggered migraine. Of course I’m extremely careful about what I eat but my cells or insulin or gut or something just isn’t handling nutrients well leading to massively disruptive symptoms from food. Even just macros. Have tried all trigger eliminations short of an elemental diet. Fasting helped but didn’t help MCAS that much after the initial switch to fat burning (environmental? Endogenous biome histamines?) and including multi day fasts. Fasting helps POTS fantastically. But apparently so does metformin. 🤷♀️
Thanks though for a clear quite easy to understand breakdown of the symptoms and associated triggers. The processes are more complex than I think anyone has grasped yet.
I’ve spoken about those other systems in other vids on the channel 👍 Thanks for the great comment!
Thank you.😊
Thanks Kimberly!
Gez - are you still taking Anti Histamines everyday ?? I find they help my symptoms a lot BUT I am scared to be on them all the time and getting tolerant to them and then when you try to get off they cause rebound symptoms and other complications and you have to wean yourself off them very very slowly although dr's will tell you this is not the case. What are your thoughts on using them ? Thanks heaps
I have been having to take them every day, yes - unfortunately! For 4 years now…
@@RUNDMC1 thank u for sharing. Do you just take one per day ? Or more ? i seem to be heading down same road . Dr's here do not know abt MCAS . So incredibly difficult.
gez what about:
Soar throat?
getting more easy sick?
flu like feeling?
numbness and tingling, burning pain?
Those can all be MCAS.
Just got covid again after 4 years. My long covid symptoms re-ignited, such as numbness in my hands and anxiety. My doctor put on Metformin which is one of the only meds I haven't tried yet. It comes with its own side effects, so its hard to tell what is the long covid or the meds. There is some research into Metrofrmin with Vit D for long covid. Have you heard of that med being used for LC?
I'm hoping my long covid symptoms don't last as long as they did the first go around. I've already been on an antihistamines like Zyertec, which if I don't take it I have trouble sleeping. Doesn't help that a life situation is increasing my stress levels which makes my symptoms worst.
So sorry to hear of your reinfection :(
Metformin is one of the very few drugs we’ve actually got decent evidence for in this scenario (helps reduce subsequent long covid) so hopefully you should come through this infection without any worsening of your baseline
@@RUNDMC1 Thanks Gez. I also took Paxlovid for 5 days after I got sick hoping that would help mitigate my symptoms. The worst was the metallic taste in my mouth. I was getting better, but then had a life situation throw me into deep stress which re-ignited my symptoms. So bad timing in that regard. I'm not liking being on the Metform (stomach issues, headache, etc.) general unwell feeling but if it can prevent me getting worse I'll try it for a month. Do you have any content on Metformin and LC?
Hello dr Gez, long time follower here, i hope this isnt inappropriate but you are one fucking handsome man! And I aint that way inclined 😅 have you been taking your NAC, Dandelion root, and vein vine? Cold showers help me a lot , thanks for your brilliant youtube channel. your good attitude will see you back at 100 percent. Be safe, later Gez!
Haha, thank you! I do have to point out that I am not a doctor though ☺️🤣
I’ve tried all of those - currently going in the opposite direction though and going cold turkey on all meds and supps 👍
What's the name of the test for POTS?
NASA lean test
Couldn’t Mcas be triggered by exertion because of histamine being released?
Exertion doesn’t tend to lead to histamine release but it definitely leads to autonomic load!
I’ve tried many things to help my long Vid and the first thing to help had been benfotiamine
ow man the heat intolerance is sooo crap w me! esp w global warming! moving to the arctic!
I have gastroparesis as well as noblonger have ny gallbladder due to surgery. I CAN NOT have ANY tomato based ANYTHING. If I go to eat it it will BURN my mouth. Funny how I USED to be able to eat anything including spicy foods. Not anymore. And I now have NAFLD as well so NO ALCOHOL for me.
Dysautonomia and MCAS - they're both a lot of fun 🥴
🤯
My MCAS symptoms also include face puffiness
I can’t even take meds .. I react crazy to antihistamine H1 & H2 I’m trying NAD taking ox bile and digestive enzymes for digestion.. can eat a meal only easy eats .. mushy 😂
I live with a burning brain and eyes as part of PEM. I can't figure out whats causing it. Antihistamines don't help.
I after over three and a half years of having long covid, I finally got an actual long covid appointment. I was so excited to get answers, but it was a morning appointment and I don't really remember much of what went down except that I was really dizzy and didn't know what to say. I remember that I got even more blood tests, and that they are still just looking for other things it might be, including lyme desease because of that one time i was bitten by a tic 17 years ago. I feel really muddled up and upset from all that, but I got my notebook out while I watched and wrote some questions for when the doctor does the follow up call.
@MiniNymph in my personal experience, I ended having loads of blood tests and none of them came back with any indication of a problem and then by the time I saw a medical professional again, I had to explain everything over and over again. Eventually, I wrote a one page document, detailing all my symptoms - graded them on a pain scale of 1-10 in severity and detailed the regularity of crashes and after that, I just hand over the sheet for them to read for 2 minutes because there's not enough time in appointments to narrow it down and they nearly always want to investigate anxiety disorders, blood issues, gut issues, brain issues - it's an endless loop of investigation to eventually get to the same place. Good luck!