Пікірлер
@WOLvTv-bb2gm
@WOLvTv-bb2gm 21 сағат бұрын
Cucumber water and tea helps my palpitations. But I do believe most palpitations have to do with the mind. If you truly convince yourself that something you are doing is working you'll notice a decrease in palpitations. For example, I believe cucumber water helps me because I've done my research and I drink it every day. The KNOWING and the DOING is what's working. You put your mind at ease and that helps tremendously.
@livingwithmecfs
@livingwithmecfs 18 сағат бұрын
I’m glad you have found some things that have helped ease your palpitations
@kathleentrinity7367
@kathleentrinity7367 2 күн бұрын
Thank you so much. I've been trying various supplements on my own because my doctors just don't get it. Your clear explanation of what works us invaluable.
@livingwithmecfs
@livingwithmecfs 2 күн бұрын
I’m glad you found Casey’s video helpful
@richardbrown8540
@richardbrown8540 5 күн бұрын
62. Had covid 3 times. Last time was the one that knocked me out. That was Nov 2022. Have not been the same since. Frustrating . Be well.
@livingwithmecfs
@livingwithmecfs 2 күн бұрын
Having Covid three times must be tough. Fingers crossed things improve for you soon
@MultiFastie
@MultiFastie 6 күн бұрын
Had sibo and many similar symptoms. Thought I had fibro. Turns out, I had a bad gall bladder and that was causing sibo and a host of symptoms. I'm post gall bladder surgery and all my symptoms have resolved.
@livingwithmecfs
@livingwithmecfs 3 күн бұрын
Oh wow, that is great your symptoms have resolved. Very interesting to know how much of an impact your gall bladder can have on your gut health
@justinslife8898
@justinslife8898 11 күн бұрын
Anyone having issues that looks like dementia episodes, minor seizures and completely out of it
@livingwithmecfs
@livingwithmecfs 2 күн бұрын
It is not something that I have personally experienced but I know some people do develop cognitive issues and memory problems
@regina6838
@regina6838 12 күн бұрын
What about Dr Lam's approach exactly make you feel worse?
@livingwithmecfs
@livingwithmecfs 9 күн бұрын
He said the reason for my fatigue was that my body was overloaded with toxins. He put me on a detox protocol, the main component was liposomal glutathione. My health began to deteriorate quite soon after starting it but I was encouraged to continue, told “you have to feel worse before you feel better” but I just continued to get worse. It felt as though my body was poisoned I the space of 4 months I went from being semi independent to completely bedbound, unable to feed myself or wash myself. Dr Lam said he didn’t know why this happened or how to help me. 5 years later I am still predominantly bedbound and need assistance with washing and eating. Thankfully my cognitive functions having improved but physically my body is still very disabled
@regina6838
@regina6838 9 күн бұрын
@livingwithmecfs I am so sorry to hear that. That's terrible news. Don't give up hope. Many people are recovering. I sincerely hope you do too. 💐🌻 Happy new yeae
@livingwithmecfs
@livingwithmecfs 9 күн бұрын
@ thank you 😊 I continue to try new things and am hopeful something will improve my situation. Happy new year to you too 😊
@kittyco0n
@kittyco0n 12 күн бұрын
Abilify? How does an antipsychotic med help with ME/CFS? What's the evidence here? Can you please point me to a paper or scientific article about this? I mean, antipsychotics can have severe side effects, so there better be some evidence for this 😮
@livingwithmecfs
@livingwithmecfs 9 күн бұрын
When used to treat ME/CFS it is used in a much lower dose than when it is used as an antipsychotic medication. Some specialist ME clinics like the Bateman Horne Centre prescribe it for patients. As with many prospective treatments for ME/CFS there is a lack of research studies because there is a lack of funding. I did find this study which maybe helpful for you translational-medicine.biomedcentral.com/articles/10.1186/s12967-021-02721-9
@kittyco0n
@kittyco0n 9 күн бұрын
​@@livingwithmecfs thank you very much for the link. I live in Germany and apart from the Charité in Berlin, we have no specialty clinics here, so the care and expertise is quite low. I feel it is more advanced in english speaking countries. And you're absolutely right. The funding for clinical trials is abysmally bad. I'll look into the link, thanks again! 😊
@livingwithmecfs
@livingwithmecfs 9 күн бұрын
@ this link may also be helpful. It is a US clinic which share information on their website about different medications that can help ME/CFS and Long Covid direct.rthm.com/treatments
@tonyareyes7496
@tonyareyes7496 13 күн бұрын
I’m realizing I can’t get my heart rate over 140 or I will crash. A few years ago I started riding a bike just around the block. Cause that’s all I could do and then after about three or four months, I could ride up to four or 5 miles.. it’s a very very slow process. Baby steps. No sugar no alcohol etc.
@livingwithmecfs
@livingwithmecfs 9 күн бұрын
That is amazing progress! It must feel so good to be out on your bike again 😄
@brucearntson8549
@brucearntson8549 15 күн бұрын
There's a huge difference between the large chamber with 2+ ATA and the majority of smaller, single occupant units. I paid $800 for 20 sessions in a smaller chamber, and it did nothing. There is a larger facility near me that offers 2+ATA, but it costs $15,000 for the same amount of treatments. And as the man says, insurance does not cover.
@livingwithmecfs
@livingwithmecfs 9 күн бұрын
Sorry to hear the lower pressure chamber didn’t help. I have heard mixed results from people using them, some find them helpful, some don’t. It is a shame the higher pressure ones are so expensive. In the UK some MS charities have chambers you can use for free/minimal cost and they are happy to let people with ME/CFS use them too
@Rutashealingroute
@Rutashealingroute 17 күн бұрын
Amazing ! I wanted to go there but instead im doing HBOT in NYC where i live and red light therapy at home ...did Aviv clinic check your brain before and after ( just curious)..congratulations on your fabulous recovery 👏
@livingwithmecfs
@livingwithmecfs 9 күн бұрын
Fingers crossed the combination of red light therapy and HBOT help you ☺️
@karenb221
@karenb221 21 күн бұрын
Can u share how to access your work on insight timer thanks
@livingwithmecfs
@livingwithmecfs 20 күн бұрын
I am not sure if Jackie is on Insight timer but you can contact her directly here to find out Website: longcovidbreathing.com Email: [email protected]
@SharonOBrienMusic
@SharonOBrienMusic 21 күн бұрын
Thank you, can you tell me what your half dose is please, and is it 5HTP I have L-tryrosine already :)
@livingwithmecfs
@livingwithmecfs 20 күн бұрын
A few months ago Casey posted this update regarding supplements “I’m currently taking: 100mg of 5-HTP on Mon, Wens, Fri, Sat 500mg of L-tyrosine daily 500mg of Choline daily”
@Noellius2
@Noellius2 22 күн бұрын
Psychedelic assisted therapy! Ketamine and psilocybin.
@livingwithmecfs
@livingwithmecfs 20 күн бұрын
Oh wow, I never would have thought about trying those. Glad they are working for you 😄
@NeoStarImpact
@NeoStarImpact 22 күн бұрын
MPH did the trick for me after 20 years of fatigue which got worse when I got Covid. MPH I did not even expect to help me with tiredness. I started taking it to treat my ADHD that got diagnosed this year. I noticed quickly that it substantially reduced my tiredness and thought this might be euphoria or just a short lived boost. But it kept doing the thing. 6 months later and it is still as strong as day 1. This stuff got me finally into a position where I was able to claim my life back thanks god. Step by step.
@livingwithmecfs
@livingwithmecfs 20 күн бұрын
That is amazing! It must feel so good to have that reduction in tiredness and be able to start doing things again 😊
@cwhisenant1
@cwhisenant1 15 күн бұрын
What is MPH?
@NeoStarImpact
@NeoStarImpact 15 күн бұрын
@cwhisenant1 Methylphenidate. It is better known as Ritalin. The only difference is how the effect is spread over time.
@Nisha-kl8rl
@Nisha-kl8rl 24 күн бұрын
I'm so grateful for Planet Ayurveda's natural remedies; they've made managing my CFS so much easier.
@livingwithmecfs
@livingwithmecfs 23 күн бұрын
I’m glad you have found something that helps ☺️
@GirlOnTheFloor
@GirlOnTheFloor 27 күн бұрын
How can you tell in advance if you'd be able to do something twice?
@livingwithmecfs
@livingwithmecfs 23 күн бұрын
There will be some activities you know you can do easily, without worsening your symptoms, for example walking 5 minutes. These are ones you are likely to be able to do twice (eg a 10 minute walk) before your symptoms kick in. Then there are other activities which you know will exhaust you, for example walking 20 minutes. You know if you struggle to do this once there is no way you could do it twice. There is an element of trial and error involved but the more you figure out your limits and what you can and can’t do without triggering symptoms the better you will become at being able to assess whether you could do something twice.
@xge555
@xge555 27 күн бұрын
Spike Protein-S destroys gut microbiome. mRNA vaccine causes proliferation of Spike Protein-S. It's designed to do that. Look up where they derived that protein. Explains clotting, heart troubles, vascular problems and turbo cancers.
@websurfer5772
@websurfer5772 28 күн бұрын
The antiviral Valcyte for 7 months in 2007 made me much worse permanently. I've had ME at least since the age of 3.
@livingwithmecfs
@livingwithmecfs 23 күн бұрын
I’m so sorry to hear about the struggles you’ve faced with ME and the impact Valcyte had on your health. It must be incredibly frustrating to have dealt with such a challenging journey for so long. Please know that you’re not alone, and I hope you can find support and care that helps ease your burden.
@websurfer5772
@websurfer5772 23 күн бұрын
@@livingwithmecfs Thank you and likewise to you, my friend. This is a long, hard road and it really hurts to be blamed for it too all the time. I've never seen anyone with Sx like mine in my real life though so it is extra difficult as I'm sure you know. 🫂
@Truerealism747
@Truerealism747 28 күн бұрын
Sleep apnea test to
@camillaconstance6526
@camillaconstance6526 29 күн бұрын
This is an incredibly helpful video. Thank you!
@livingwithmecfs
@livingwithmecfs 29 күн бұрын
I’m glad you found it helpful 😊
@LuckyDad01
@LuckyDad01 Ай бұрын
What I am finding out is that what works for one person may not work or partially work for another. Incredibly terrifying
@livingwithmecfs
@livingwithmecfs 29 күн бұрын
Yes I would definitely agree, there can be a lot of trial and error when it comes to finding what works for you.
@terivaara
@terivaara Ай бұрын
Could I ask what kinds of boundaries you are referring to?
@livingwithmecfs
@livingwithmecfs Ай бұрын
Before being ill I was a people pleaser who always put other peoples needs and feelings before my own. Learning to be more assertive, learning it’s ok to prioritise myself (particularly the need for rest) and that it is ok to say no helped stop my energy being drained by others.
@annahallgren1055
@annahallgren1055 Ай бұрын
D-ribose. Effect noticed after two weeks. 1(-2?) table spoon 3 times per day for two weeks, then 2 times/day.
@prairiesunflower
@prairiesunflower Ай бұрын
I might be doing that but only because I am afraid to try a bit more. I have become obsessed with trying to feel the best possible... But the best possible is so far from doing the things I want to do.
@livingwithmecfs
@livingwithmecfs Ай бұрын
I know it can be a tricky balance between trying to feel as good as you can but also do some of the things you enjoy. Maybe try just dipping your toe into something you want to do…do it just for a few minutes and then stop. Even if it seems like a ridiculously short about of time and you don’t get the full pleasure from the activity it could help build your confidence in your bodies ability to do things
@annahallgren1055
@annahallgren1055 Ай бұрын
D-ribose can be very helpful when you have ME/CFS -insomnia. You notice a difference after (1(-2?) tea spoon 3 times per day for) two weeks. (Then continue with two). Better sleep helps ME/CFS.
@livingwithmecfs
@livingwithmecfs Ай бұрын
That is great you have found it helpful. Being able to have a good nights sleep is so important 😊
@RnW9384
@RnW9384 Ай бұрын
12-6-24 I'm fully vaccinated. I had covid twice, the 2nd time I have long Covid symptoms - fatigue n dizziness. My local Chinese pharmacy's pharmacist custom made a formula for me. It's a powder and I add hot water to make a tonic. I take it once a day, and started to feel better after about about week. R
@livingwithmecfs
@livingwithmecfs Ай бұрын
That is great you have found something that is improving your symptoms 😄
@RnW9384
@RnW9384 Ай бұрын
12-6-24 I'm fully vaccinated. I had covid twice, the 2nd time I have long Covid symptoms - fatigue n dizziness. Chinese herbs are helpful. My Chinese medicine practitioner custom made a formula for me. It's a powder and I add hot water to make a tonic. I take it daily, and started to feel better after about about week. R
@karlsturzebecher9463
@karlsturzebecher9463 Ай бұрын
Hi Rob… beautiful video! BIG Thank you! Recently this October I caught covid and down/out for 4 weeks. I have been focused on the physical recovery and didn’t think about the nervous system side effects. This is a struggle to get back to maybe some kind of normal. I truly appreciate your guidance! Cheers! Karl
@livingwithmecfs
@livingwithmecfs Ай бұрын
I am glad you found Rob’s video helpful 😊
@karlsturzebecher9463
@karlsturzebecher9463 Ай бұрын
Thanks!
@livingwithmecfs
@livingwithmecfs Ай бұрын
Thank you for your generosity
@astromonkeyrobot
@astromonkeyrobot Ай бұрын
I've gone through this in cycles only to relapse again. And while the crash may not be quite as bad, it's still debilitating and leaves me unable to do anything. Doesn't usually feel like improvement. Honestly, I don't think I feel like anything's improved as much as it has just changed or morphed into a different version of itself.
@livingwithmecfs
@livingwithmecfs 29 күн бұрын
I’m really sorry you’re dealing with this-it’s so tough when things feel like they keep shifting instead of getting better. It can feel hard to see progress when it seems like the same struggle just in a different form. But honestly, simply getting through it shows a lot of strength. Be kind to yourself; you’re doing the best you can.
@astromonkeyrobot
@astromonkeyrobot 29 күн бұрын
@livingwithmecfs thank you. 💖
@maddygold
@maddygold Ай бұрын
can you link the supplements you used?
@livingwithmecfs
@livingwithmecfs Ай бұрын
Hey, sorry it’s taken me a few days to reply. In June Casey posted this update “I’m currently taking: 100mg of 5-HTP on Mon, Wens, Fri, Sat 500mg of L-tyrosine daily 500mg of Choline daily”
@maddygold
@maddygold Ай бұрын
@ thank you so much!
@jvvallie
@jvvallie Ай бұрын
I agree with every thing said here.
@bodilskumsrud520
@bodilskumsrud520 Ай бұрын
Carnivore!!!❤
@phoenixa.9951
@phoenixa.9951 Ай бұрын
I knew that they would fund research for long covid because its about a 50% ratio of men patients. Diseases that affect mostly women do not get funded like the ones that affect men do. let’s hope that they can find some thing with this billion dollars and that they will be willing to let ME/CFS patients benefit from the research as well.
@livingwithmecfs
@livingwithmecfs Ай бұрын
Yes fingers crossed they find something helpful 🤞
@e.williams13
@e.williams13 Ай бұрын
What immunosuppressant was she taking? people have asked a couple of time and there was no response.
@livingwithmecfs
@livingwithmecfs Ай бұрын
Wanda was taking Hydroxychloroquine
@e.williams13
@e.williams13 Ай бұрын
@livingwithmecfs ok thx 🙏
@user-kc1ci8jg2d
@user-kc1ci8jg2d Ай бұрын
Vax and shedding its a medical experiment from a federal judge
@moniquelemaire5333
@moniquelemaire5333 Ай бұрын
This is great encouragement.🌠 Yes, to all three. It's been a long time since I have had a crash. In fact, I have started a new part time job as a cashier at a local store. I still find it difficult to stand for my four hour shift, but at least it is a part time job bringing in some money. I like your channel for it's simplicity and your straight forward encouragement. Keep up the great work and the videos. God bless you and your family 😇🙏. Miss Monique 🙂🙏🌷💗
@livingwithmecfs
@livingwithmecfs Ай бұрын
That’s is amazing you have improved enough to go back to part time work! Congratulations 🥳 I’m glad you find my channel helpful ☺️
@nekki98
@nekki98 Ай бұрын
Casey: I will try to find you on Instagram. I thank you so very much.
@JSJSpeaks
@JSJSpeaks Ай бұрын
Hello dear! I experience these sometimes, but I'm often in the push crash cycle, so they vary in intensity, but I'm definitely doing better than 3 years ago!
@livingwithmecfs
@livingwithmecfs Ай бұрын
It is great you are doing better than 3 years ago! 😄
@bak6194
@bak6194 2 ай бұрын
Hey Casey thank you for the info I'm sure you have been informed that those of us who have been vaccine injured suffer from many of the same kind of issues.... my main thing was a horrific change in mental health to where I literally was psychotic three days after taking it I woke up suicidal and I have had a rough life and never been suicidal... you are not alone in the significant mental health area and it does seem strange but the spike protein at least when given the shot via the lipid nanoparticles will pass the brain barrier and well basically, everything and for me that's what it did like so many women it also went to my ovaries which then made me bleed for 3 years every single day until I was diagnosed with breast cancer I didn't even know hormones could cause cancer because there is literally zero cancer in my family which could make up a medium-sized town there are so many of them.... thank God my breast surgeon was the first Dr confirmed breast cancer from the hormonal issues via the vax. I'm glad that we have been able to come together as communities so we can help each other. I know many others with the same symptoms. In my small circle of just injured there are thousands and that's just a small circle of Minnesota billions of these were given out and almost everybody has had covid so beyond the covid virus it's not too far to expect that Millions have died and or are still sick either from the vaccine alone or the vaccine plus the illness, or the illness itself ... not trying to be controversial but I'm so past that BS... thank you so much for sharing your experience I really really liked the idea of pacing and had never heard of that before..... and now I've got a couple more supplements to add to my 30 plus that I'm already taking LOL I really hope that they do something about these things before the end of our lifetimes.... if your government is anything like the USA they usually wait until most people have passed away from whatever it is or whatever so called "conspiracy theory" is going around and only then they will bring it up..... unfortunately according to even the Pfizer papers and what they have found this will go on for Generations. But don't lose hope whether it's from the illness or the vaccine the fact of the matter is this was not a natural virus... one of the biggest things that's helped me is just being plain old stubborn and refusing to let the system beat me..... the difficult thing is for the rest of my life I will not know what is naturally been caused by life and my body and what has been caused by the poison. Thank you so much again sorry so long LOL I get feisty when it comes to this stuff LOL my prayers for anybody and everybody that is listening to this
@Mantras-and-Mystics
@Mantras-and-Mystics 2 ай бұрын
This made me cry. Finally someone is aware of the extent of the suffering ... but it's too late... we will be forever locked into disbelief and gaslighting. If only this was terminal ... After 40 years of hell, I would gladly die.
@livingwithmecfs
@livingwithmecfs 2 ай бұрын
I completely understand how frustrating and disheartening it can feel when healthcare professionals don’t seem to understand or take ME/CFS seriously, leaving you feeling isolated and unheard. Please know you’re not alone; the ME/CFS community is filled with people who truly understand your experiences, and advocates are working tirelessly to raise awareness, improve research, and educate doctors. Change is slow, but progress is happening, and until then, focusing on small ways to care for yourself and connecting with supportive communities can be a powerful source of strength. Your experiences are valid, and there are people who believe in you and are fighting for better understanding and care.
@Katthechristian
@Katthechristian 2 ай бұрын
1. boundaries 2. a job that better suits me 3. loving myself 4. supplements 5. having a kitty kat (pet) just now starting regular smoothies and animal flow, and i already love them both!
@livingwithmecfs
@livingwithmecfs 2 ай бұрын
Loads of great suggestions! I can see how they could all help you - I do quite a few of them myself ☺️
@peterjohnson8935
@peterjohnson8935 2 ай бұрын
Natural immunity, good nutrition and supplementation is always best for a recovery.
@livingwithmecfs
@livingwithmecfs 2 ай бұрын
Great suggestions 😊
@ivykrane2171
@ivykrane2171 2 ай бұрын
I’ve been learning French with the Duolingo app for a few years now. It’s been so satisfying to have something that builds as long as I do a few minutes per day…over the years I’ve become someone who can almost make out the dialogue of French films! In a backdrop of loss and apparent decline, this is amazing and gratifying. Also, I find French is something I can concentrate on, forgetting everything else, while much cognitive work is out of reach.
@livingwithmecfs
@livingwithmecfs 2 ай бұрын
Très bien! C’est fantastique! You must have got pretty good to able to make out the dialogue in French films!
@ideiaamor856
@ideiaamor856 2 ай бұрын
Hi 1st time here. What does ME CFS mean ?
@livingwithmecfs
@livingwithmecfs 2 ай бұрын
ME stands for myalgic encephalomyelitis CFS stands for chronic fatigue syndrome
@ivykrane2171
@ivykrane2171 2 ай бұрын
@livingwithme do you set alarms?
@livingwithmecfs
@livingwithmecfs 2 ай бұрын
I don’t but I know some people do and they find it helpful
@a333aaa
@a333aaa 2 ай бұрын
i've been getting better and having a higher energy threshold this year compared to before, but it's SO hard to pace with work. i've finally landed a half-day situation for work but i'm still so so exhausted and worried i'm working myself into another crash... how do i pace in a work environment? it's such a difficult thing to juggle and my fear of flaring up again makes pacing even harder!
@livingwithmecfs
@livingwithmecfs 2 ай бұрын
Juggling this illness and working can be tricky. If possible work from home, I found the general noise and busy environment of an office very draining even though the job I was doing was super simple. If work from home isn’t possible you could try to have regular short breaks in the day. I have heard some people hideout in the toilets for 10 mins just to get a breather! Think of it like sneaking out for a cigarette break but you are not smoking! Pamela Rose periodically does webinars which teach return to work strategies www.pamelarose.co.uk/return2work If you are in the UK you could check out this organisation which has been helpful for some people www.working2wellbeing.com/
@juvesaucedo
@juvesaucedo 2 ай бұрын
Hello! thanks for sharing the story. Regardin the Hyperbaric oxygen therapy there are the medical grade and therapeutic grade. The medical chambers are up to 3 ATA which is 3 atmospheres equivalent to 44 PSI. The therapeutic ones are up to 1.5 ATM equivalent to 22 PSi. Which one did you take?
@livingwithmecfs
@livingwithmecfs 2 ай бұрын
Matthew had treatment at Aviv Clinics, their website says the chambers go up to 2.0 ATA
@carolelegault9545
@carolelegault9545 2 ай бұрын
You are describing me.. thank you for the tips
@livingwithmecfs
@livingwithmecfs 2 ай бұрын
Glad they helped 😊
@mickwreay3034
@mickwreay3034 2 ай бұрын
What was the supplement you took please?
@livingwithmecfs
@livingwithmecfs 2 ай бұрын
In June Casey posted this update about supplements “I’m currently taking: 100mg of 5-HTP on Mon, Wens, Fri, Sat 500mg of L-tyrosine daily 500mg of Choline daily”
@holsch79
@holsch79 2 ай бұрын
@@livingwithmecfs I read the study he mentioned. They only speak about low serotonin levels. Therefore 5-.htp makes completely sense. I don''t know why L-tyrosine is recommend, because that is for the dopamine levels. Wouldn't it be better to take pure 5-htp?.
@livingwithmecfs
@livingwithmecfs Ай бұрын
@@holsch79 Casey was a guest on my channel in February so it is unlikely he is still checking the comments on this video. He is still active in this Long Covid Facebook group if you want to ask him questions about the supplements he takes facebook.com/groups/938189996762722/?multi_permalinks=1320823218499396&notif_id=1706875307716844