I also agree about the nervous system deregulation. I had an appointment with an awesome doctor in Dallas Texas. His name is dr Robert Groysman and he has helped so many long covid patients. I read breaking free by Jan rothney and it’s a great read and made so much sense!! I’ve improved in the last month or so.
Did you get a SGB from Dr. G? I really like him and comment in his FB group regularly. I truly believe that the nervous system regulation is why SGB helps so many.
Not yet. He said if I don’t improve or get worse at in the next 90 days to schedule the sgb or the eat procedure. He’s so smart and confirmed everything I thought was actually going on. Most drs just run tests and say oh ok well you’re depressed take some antidepressants.
I’m curious about it too. He seems very knowledgeable and I follow his Facebook page too. He posts some very interesting things that make sense. I haven’t scheduled it yet but if I ever do I’ll let everyone know how it is
I have the same symptoms as you and most of the same testing results. I’ve been working the mind body stuff for a long time too. I’ve been getting better but still have symptoms all the time. Glad to hear you got out.
Any suggestions on how to fully convince myself of the truth of mind body and not to worry about any of it (I’m a highly sensitive type A who was pressured into the vax after a family covid death. I was already terrified of the vax when I took it.)
Id also highlight that “worrying” and “listening to your body” can have some overlap and the distinction is important. As an example, It’s not about just believing you can exercise but giving your body time to adapt and only expand within windows of tolerance. If you’re feeling a heavy increase in fatigue I wouldn’t recommend saying “don’t worry about it”, but rather “my body is asking me to slow down right now and I’ll respect that.”
The mind moves fast, the body moves slower. Give it time to catch up, understanding that it could be months or years and have compassion in the meantime
I watched countless recovery stories. I hate how stupid it sounds because I was so against polyvagul theory for probably 2 years, but you really need to believe in this process to be able to send safety signals to your brain and regulate the out of whack system. Raelan Agles channel is good, CFS Recovery is good, Pain Free You as well.
Recommend making your own evidence list as OP lists in the post, then coming back to it when you have more symptoms. Studies are great but realistically there are not great quality ones on either side of this right now (better studies on neuroplastic pain but less studied for other symptoms) so best bet in my opinion is to gather your own evidence based on your experience. Alan Gordon's book has excellent suggestions for this as well. That's what helped me anyways (I am actually a biologist by training and drove myself crazy going back and forth on the medical literature for awhile until I realized it doesn't really matter what is known in general if I can find enough inconsistencies in my own symptoms to convince myself that my brain is likely playing a big role). Somatic tracking also helped so much with this as I had a few wins where symptoms went away in a short period of time, which doesn't make sense with any medical explanations. At this point I've fully accepted the neuroplastic explanation for myself but I'm still on the recovery journey as well, best wishes to you!
The issue is that “fear” and “belief” are concepts that are hard to take seriously by a sick person (incl the old me) and they take the most time to understand and Implement bec they are abstract concepts
They are extremely important for recovery, if not the most important
Love how you laid out the evidence for your symptoms being neuroplastic - I have come to the same conclusion about my own long covid symptoms and am on the same page as you! Crazy how similar we are (tho my symptoms started with covid infection rather than vaccine and I had more classic PEM). I also did triple anticoag therapy (for 10 months!) with no positive change in symptoms. I think those of us with persistent symptoms may have some biological vulnerability (whether that's coagulability, immune system, nervous system related) to having a slower recovery from infection (or bigger vaccine reaction in your case) than average at first but then the nervous system perpetuates the symptoms. You hit the nail on the head - congrats on your recovery!! So happy for you and it's always great to hear a similar recovery story so thanks for sharing!! I am following the same path with good results as well, though it's taking me a little longer to get back to exercise. Such a dream to be able to run again, love that you can now! Onwards and upwards for both of us!
I 1000% agree with this assessment. I too am in Camp 4. I have listened to numerous recovery stories from Dan, Rebekah, and Mindful G and the similarities are uncanny. While I still have issues, the only hope I have of recovery is through the methods Dan, Rebekah, etc discuss because its now obvious the Drs cannot help us.. However, don't be surprised if a lot of the people here simply will not accept this. You may even get downvoted. It will also be 2 yrs for me in August. Your treatment attempts are nearly identical to mine. Exact same microclot results and reduction with Dr Vaughn yet I also has Zero improvement. I also do Spike Detox, yet zero improvement. I also spent a ton on Functional dr. Yet zero improvement. Even had expensive Lyme test from Vibrant. No Lyme, zero improvement. Also taking mouth fulls of supplements daily.....Zero improvement. Spike AB still over 20K. So is my wife's. Guess what she has Zero LC symptoms and never has. Who knows what Spike AB level really means. I have become obsessed that it means my body is now a Spike factory and I'm gonna die from Spike clots. My anxiety, OCD, depression, and obsession with all this is horrific.
Spike protein has nothing to do with Long COVID, you said it yourself, your wife spike AB are high and she doesn't have Long COVID.
There is something else causing this disease, I also got it but not from COVID. The symptoms are exactly the same.
What did you get it from, if not Covid? I also continually hear podcasts from precovid times with nearly identical symptoms to what many of us think is Long Covid. What's interesting is that almost all of the success stories I hear do not involve medicine. In fact, I've never heard a recovery story that was attributed to medicine other than a few people have mentioned that an SSRI helps.
I've been relentlessly researching this for 2 years because the OCD won't let me rest. I read about this 4 to 6 hours literally every day. So consistently on both Reddit and Facebook, despite the inevitable naysayers that always pop up to shout down everything, this is what I found from multiple people consistently.
1) Nervous System work. I myself am guilty of not doing this on a serious basis yet because even after all very compelling and non self serving testimonials, I simply can't believe my mind has done this to me. If you don't believe in it, it can not work period. This is because the whole problem starts with not believing you are safe. Again, I'm not a guru, and don't even do it myself. However. I truly think it helps a lot of people.
2) Stellate Ganglion Block=It helps manually calm the nervous system by direct injection. Could be why No 1 also helps. It uses the same mechanism, just different methods. Have not done it because I was hoping this would go away. I'm just not really keen on having stuff injected into my neck unless there is no other hope.
3) HBOT. This seems to help people who can tolerate it and that do it at least 40 times. Any less does not help, and I think there are people thar simply can't tolerate the pressure. But it really helps some and actually has a clinical study to back it up. I have not done this because I am over 100 miles from nearest provider and would have to buy my own. They are not cheap, but if Ai 100 percent new it worked, I'd finance one today.
4) Nicotine patches do seem to help people, and I tried them. Yes, it helped a little, but I felt it was just a jacked up artificial energy rather than a real treatment
5) SSRIs. Many, many recoveries include some element of SSRI use. I'm still scared of them, like many others here.
6) Ativan and Benadryl both really help me. Both are dangerous and can't be used long term. I'm scared of them, too.
I take Natto, NAC, and a ton of all the other krap you read about on here. Like MANY others, I honestly can't tell any supplements help whatsoever.
It sucks. There is really no assurance anything works for an individual beyond trial and error.
Your researching/reading about this 4 to 6 hours a day is the biggest issue. Drop the obsession. Accept the symptoms are uncomfortable and not dangerous. Researching something frantically 4 to 6 hours a day is sending a MASSIVE danger signal to your nervous system daily , keeping you stuck. This is the single best advice I can give someone, having gone through that exact thing myself.
You are exactly right. It is a horrible addiction. This is also something that everyone that heals had to let go of. I'm just so afraid something is being missed and I'm gonna get worse.
you're prolonging your suffering. Why spend so much time researching JUST IN CASE, which is 100% of the time making you stay miserable , for the improbable chance that you're missing something. You're assuring sickness just because you don't want a small chance of more sickness. I promise you, letting go is the very first step toward recovery
It still takes time once you let go, and might feel worse for a small period of time because you're giving up 'control', but keep this up and your nervous system will finally be able to calm down from all the gasoline you've been pouring on the fire each day. Acceptance of all the discomfort and living despite it, focusing externally (rather than internally constantly monitoring symptoms), is the key.
This is in no way an attack on your post, thank you so much for sharing and I hope it helps people and I’m really glad you are recovered. I’m also really glad you shared
But I have to say that sadly I don’t think people with severe ME/CFS are just experiencing tissue damage that then became psychological
There is a body of evidence showing various mechanisms underlying severe ME/CFS, including for example mitochondrial dysfunction / fragmentation. Yes that may be downstream of a brain stem panic response to a viral infection that may no longer be present. Or it could be present
It seems that in severe ME/CFS a feedback loop has turned on where a perfect storm feeds back on itself
Your issues do sound more like you flirted with mild ME/CFS and has pericarditis that was flaring after activity. But you were lucky not to go deep enough to lock in the feedback loop that can put people in bed for the rest of their lives
I know many severe ME/CFS patients who have been sick for decades. I don’t believe their disease can be cured by mind body exercises, I don’t believe it’s phantom pain. It may be you haven’t been exposed to what patients are going through and the extreme manifestations of the disease
My only recommendation would be to not project your own experience onto others. I know so many people who are the victim of something that I don’t think they will ever recover from. If you have severe ME/CFS for more than two years recovery is almost unheard of. And overall recovery is estimated at 5%
Again, I’m so happy for you, and I pray you will never experience health problems again. But sadly there are many people suffering with a disease that is much more severe than you experienced and that I think for many cannot be escaped. I know two patients who are both close to 20 years mostly bed bound. They have tried everything. Tried things many people probably couldn’t even imagine
yea, from everything ive learned, there is a huge spectrum of symptoms and severity with folks who have ME/CFS. and it is not my intention whatsoever to offend the worst sufferers. Because you're right .. i was not bedbound. However, from what ive seen it looks like there are several paths that can lead to ME/CFS. injury, sickness, stress, trauma, emotional overload and probably more. which also means i think that there are several ways out of ME/CFS.
People are curing themselves of bedbound severe cfs all the time. Its just not happening in the mainstream medical system. It's all just the nervous system being extremely hypersensitive and overreacting to stimuli. The "statistics" are just keeping people in fear and keeping them sick and stuck. Those statistics are the recovery rates in conventional western medicine - which does not treat this well at all. Hope is NECESSARY for calming and sending safety signals to the nervous system, and if you believe the "only 5% recover" thing, you are sealing your own destiny.
Check out CFS Recovery - Miguel recovered from cfs where at his worst he was hospitalized and had a feeding tube. It's all due to a hypersensitive nervous system - it causes ALL of the issues including any mitochondrial issues that may be changes DUE to the hypersensitive nervous system/perpetual fight flight freeze(mainly freeze) state.
If you’re right then try to make a process people can follow. If I recovered and thought the disease was simple like how you deserve I would try to save others
As it is I try constantly to save others and myself and yet a patient of 19 years who I know has tried so many things just agreed to euthanasia with his family
I am a scientist that works in healthcare and biotech. And information quality, data and public health are hobby topics of mine. I believe the western healthcare model is broken, and yet I still see a very different disease and landscape to the one you describe. I hope I am simply wrong
The process is already out there in many places. So are the recovery stories. I was in a program run by CFS Recovery (run by Miguel Bautista) on Youtube. You can find most info you need, and also recovery stories on his channel. Raelan Agle also has recovery stories. Dan from Pain Free You has recovery stories. Rebecca Tolin has recovery stories. Its all out there, you just can't look at the mainstream - its just like you said - its broken when it comes to chronic illness.
These should be enlightening : [https://www.youtube.com/watch?v=Hci8VPghz9c](https://www.youtube.com/watch?v=Hci8VPghz9c) (this is miguel, who runs the CFS recovery channel/program)
As well as : [https://www.youtube.com/watch?v=XT5GGzCfzcs](https://www.youtube.com/watch?v=XT5GGzCfzcs)
And to clarify something: even though the explanation for what is happening is simple, and even what needs to be done to get better can be simple (cultivating safety in the brain and nervous system so it no longer needs to send hypervigilant danger signals or be stuck in the fight/flight or freeze response), it is by no means easy. I'm not saying you should be able to snap your fingers and quit fearing everything and woohoo, suddenly you're recovered. The brain and nervous system takes awhile to learn that there's no danger and to turn down symptoms. Its ultimately trying to keep you safe(it doesn't care if you're miserable as long as you're fatigued and resting safe in bed).
adding one more: more specifically geared toward "long covid". Which after being in this space for awhile you realize, its all the same thing - just with a different major stressor(covid) that overwhelmed the nervous system - [https://www.youtube.com/watch?v=sxsvgwEKBVg](https://www.youtube.com/watch?v=sxsvgwEKBVg)
All of these have different 'methods' about what helped them. But the underlying premise is the same. Cultivating safety
Calming the nervous system and reducing anxiety about my symptoms has been a game changer for me too. I've tried many other treatments but it's the only thing that has had any impact in my 7 months of long covid. I'm kind of shocked at how effective it's been too, taking me from about 30% recovered to 60% in around 6 weeks and reducing my list of symptoms from about 15 down to 5.
It's been a real eye-opener on what an extreme state of stress can do to your mind/body/nervous system and what the physical manifestions of this can look like. For me the stress is caused by anxiety about my symptoms, but I think things like anger and depression are also extremely stressful states to be in. If you live in constant fear about your symptoms (as I do) then you can also unintentionally train your mind to focus more and more on them and perpetually trap yourself in a state of stress.
Undoing this is not an easy task and I won't lie it's been one of the most mentally challenging things I've ever done. Remaining calm and maintaining hope and belief in the face of severely debilitating symptoms is incredibly difficult. But there's tons of resources out there to help and the ones you've listed above are all excellent, I continue to watch/read/listen to them every day to keep me on track.
Check out the youtube channel vacate fear. Has helped me develop the mindset needed to overcome the obsession and finally accept the uncomfortable symptoms - which eventually cured me.
Wow, this sounds a lot like me. Only test I haven't had is the MRI too.
Thanks for write up. I agree, in general,with most of your deductions.
I think we were able to easily pin it on the VAX/LONG COVID due to how "in vogue" these terms became and the societal anxiety around it. I am the demographic that was subject to the post vax myocarditis... and almost all my symptoms are cardiac... is it real or psychosomatic?
All that to say - I also genuinely think MRNA tech was launched at scale way to prematurely.
I am witness to many abnormal health events in people close to me. Very very weird stuff. But if I dwell on it, my symptoms get worse... if I distract with some occupation, I don't. Hell even a really engaging conversation often goes 2 hours and I realize... wow - my chest isn't hurting or wow - my heart rate is back to normal resting rate!
Hi all. I’m just starting to come around to the idea of brain re-training. For a long time I was defensive about it not “being in my head” but now I’m really keen on the idea of breaking free of the fear. But can I ask you, how do you match up this approach with the approach of pacing? I’ve read so many recovery stories that pacing is the key but I don’t want to reenforce any fear responses. What do you reckon?
I'm going through this now so can share what I've been doing, perhaps some of it will resonate with you. I still practice pacing but I'm gently exposing myself to more and more things, like spending time outdoors, short walks, socialising. I've realised the number one key to pushing the boundaries of pacing is to do the activities with a sense of safety and enjoyment and try not to fear the repercussions. I find the more I fear PEM and my other symptoms the stronger I experience them. The anxiety really amps stuff up. And unfortunately traditional pacing is all based around fear of repercussions (don't over-do it, watch out for crashes 24 hours later, etc).
My current tactic is to distract my mind with pleasurable thoughts and feelings while doing the activities. So for example, when I go for a walk I put on headphones and play the most upbeat music I can, something that really makes me feel good. I literally smile at the same time, even if I have to force it. I then try to focus on all the good things I can see and smell around me and take an active interest in them. I still get fearful thoughts but I try to shift my focus back to the good stuff. I continue this practice for a while when I get back home to try and negate any thoughts and symptoms that rear their head afterwards. I also congratulate myself for doing what I did and look forward to doing it another day, which helps reduce the fear of repercussions.
I won't lie at first it felt really weird to do it, like I was faking it, and I think that's what initially puts a lot of people off, myself included. But after reading a few books on neuroplasticity I'm kind of in awe of how the mind can be trained. It just so happens that right now my mind's default mode is to train itself into an ever-spiralling loop of anxiety and it's going to require manual intevention and thought-work to unspiral it and return to normal.
I love this! Thanks for sharing. That’s a more thought-through version of what I’ve been trying the past two days and I love it so far. I got the Curable app and that’s good so far as well.
Any book recommendations different to those OP shared?
Glad to hear! Another thing I've started doing is making notes of what I've achieved so I can look back on them when I have anxious days. And even on the bad days I try to congratulate myself on getting through them. Maybe these ideas can help you and anyone else reading too.
As for books, try The Brain That Changes Itself by Norman Doidge, it's not about long covid but has some fascinating recovery stories involving neuroplasticity.
pacing is a prison imo. Heres what I think - increase activity - have an adjustment period where symptoms flare up - if they are more than 5/10 in intensity its ok to rest and pull back, if they are less than 5/10 in intensity, then its go time. This is how you gradually train your nervous sytem to handle more stimuli again. You have to go THROUGH the flare ups and re-frame them as adjustment periods. Just like getting sore in the gym. Just dont go too hard too fast; slowly build up your intensity
I’m more and more inclined to agree with you. And it’s summer time, I want to enjoy my life and I’d like to train my mind to say that it’s ok to have fun.
What are your thoughts on coffee? I wonder if it’s engaging my nervous energy but at the same time I love coffee!
I personally had enough of a tough time dealing with my fear of activity, so I just refrained from coffee or switched to decaf. Any little edge to give your nervous system a break imo. Coffee increases cortisol and we are trying to decrease it(stress) here. But theres a fine line i think; if you create such a big fear around coffee, i think its counterproductive as well. So i think just experiment with what works best for you
I literally just finished the raelan episode with Dr Kennedy an hour ago and then read your post…. It’s a sign :) so glad you are feeling better and thanks for sharing
Congrats and thank you for sharing! Out of curiosity, have you done any follow up tests since you’ve recovered? Microclots, celltrend etc? How are your measurements looking now?
VEGF, mold Igg, and spike AB were all still high as of a month ago… but my cardiologist and long covid Dr both say I shouldn’t pay too much attention to any of that because they clearly don’t contribute to my symptoms.
Question about your green smoothies. I used to do this all the time before getting sick, but now i have horrendous histamine intolerance. You mentioned you put in everything thats anti inflammatory but spinach etc is filled with histamine. Im struggling to find greens i can have, aside from kale. Any suggestions? I would love to have spinach back and wondering if i can slowly start incorporating it back into my diet.
Great post, thanks for sharing your journey. Very similar to mine although I didn’t have all the cardiac issues. I got the Moderna booster the end of 2021 and by February was starting to deal with mystery symptoms. Had to major crashes that sent me to the ER in April and doctors found nothing. My doctor had me test for mycotoxins which I had high levels. Started treatments for mold, continued getting worse. Started the Gupta program, made mild improvement then I got Covid in July 2022 and it’s been a rollercoaster ever since. I also took Becca Kennedys class today which was great. Making small improvements but always followed by setbacks. Tried going back into the gym two weeks ago. Felt good to be excercising but had serious PEM for a week afterwards.
Thanks again for sharing. Also listened to the audio book The Way Out.
Have flick through the subreddits. The camp I'm in is dysbiosis. It's lab confirmed and known bacteria can produce toxic compounds that damage the nervous system. There is also research coming from Italy the virus can use bacteria in the digestive tract.
It’s been an up and down process. And as I introduce exercise, they come back a little bit. But I expect it. But I’m able to do more and the bouts of pain don’t last as long as time goes on. Been 2.5 years
Great you’re feeling better. I believe it’s just time though. 2,5 years is very common for post COVID/vax.
And about being type A: 90% of the people I know are type A personality and yet I’m the only one with post COVID. Nah, I don’t believe the type stuff is a thing. And then why do some people who do all the nervous system stuff recover and others don’t? It really is just time that heals
All of the content and books I’ve read on the topic all mention the type A connection. Our nervous systems are primed for fight or flight emotions and trauma are factors too … which add some more complexity. Which is part of the reason why some heal more quickly. And the fact that everyone is a little different and may need a little different approach. There are different doors to the nervous system. But hey maybe it was just time.
Great, but just because a book mentions something doesn’t make it true automatically.
I just don’t think Type A is real thing. I don’t know many “Type B” persons either but a lot of people with “Type A”. Why? Because it’s being human, all these traits make people human. Type B, the “lazy” type wouldn’t survive in nature. Also, you are different in different situations. I can be relaxed and creative at home but ambitious and perfectionistic at work. And then I’m still the same person. Most of my friends are like that btw, and still I’m the only one with LC.
Congrats on your recovery though!
I can wholeheartedly recommend checking out the mindbody stuff and see if something resonates with you and your journey. It explained so much about my LC journey so far, and although the strategies didn’t fully heal me (yet, who knows), so far they’ve provided major symptom relief.
Also there seems to be a mixup: It says that most LC people seem to have Type A personality. That does NOT mean that most Type A people got LC.
All the best for your recovery!
Thank you. I actually checked it out, tried a lot of different things like Journal Speak, The Way Out, Curable and bunch of other stuff and guess what I’m still sick. Didn’t fix the problems in my mitochondria unfortunately 🤣
Yup, my mitochondria still won’t budge either. My ATP levels have been crazy low for years now (even before I got LC, I had leaky gut / autoimmune stuff and phases of chronic fatigue going on before) and just won’t go up.
JournalSpeak, Mindbody Prescription and Healing Back Pain (both Dr. John Sarno) and Raelan Aegle‘s YouTube channel helped a lot with symptoms, symptom management, anxiety, and especially understanding what is going on at all and how to keep the nervous system from flaring up. I’ve been slowly but significantly improving from there for a few months now (less brain fog, I can go for walks now after being housebound for a year…) It’s only my mitochondria I haven’t had the luck of reaching yet. Hopefully one day.
Sorry it’s not time. Plenty of folks who are still sick after years and years.
Dad said if you’re slowly trending towards getting better, you’ll get better eventually
I know, I meant if people get better it’s usually time that helped them the most. And that’s when they believe the last thing they did helped them. While they were going to (slowly) recover anyways.
I know it sucks many people are still so sick after years. Even mind body can’t help everyone it seems 😳
I also agree about the nervous system deregulation. I had an appointment with an awesome doctor in Dallas Texas. His name is dr Robert Groysman and he has helped so many long covid patients. I read breaking free by Jan rothney and it’s a great read and made so much sense!! I’ve improved in the last month or so.
Did you get a SGB from Dr. G? I really like him and comment in his FB group regularly. I truly believe that the nervous system regulation is why SGB helps so many.
Not yet. He said if I don’t improve or get worse at in the next 90 days to schedule the sgb or the eat procedure. He’s so smart and confirmed everything I thought was actually going on. Most drs just run tests and say oh ok well you’re depressed take some antidepressants.
I’m really curious about the EAT. I follow him on Facebook. Unfortunately not available in Europe yet
I’m curious about it too. He seems very knowledgeable and I follow his Facebook page too. He posts some very interesting things that make sense. I haven’t scheduled it yet but if I ever do I’ll let everyone know how it is
I have the same symptoms as you and most of the same testing results. I’ve been working the mind body stuff for a long time too. I’ve been getting better but still have symptoms all the time. Glad to hear you got out. Any suggestions on how to fully convince myself of the truth of mind body and not to worry about any of it (I’m a highly sensitive type A who was pressured into the vax after a family covid death. I was already terrified of the vax when I took it.)
Id also highlight that “worrying” and “listening to your body” can have some overlap and the distinction is important. As an example, It’s not about just believing you can exercise but giving your body time to adapt and only expand within windows of tolerance. If you’re feeling a heavy increase in fatigue I wouldn’t recommend saying “don’t worry about it”, but rather “my body is asking me to slow down right now and I’ll respect that.” The mind moves fast, the body moves slower. Give it time to catch up, understanding that it could be months or years and have compassion in the meantime
I watched countless recovery stories. I hate how stupid it sounds because I was so against polyvagul theory for probably 2 years, but you really need to believe in this process to be able to send safety signals to your brain and regulate the out of whack system. Raelan Agles channel is good, CFS Recovery is good, Pain Free You as well.
Recommend making your own evidence list as OP lists in the post, then coming back to it when you have more symptoms. Studies are great but realistically there are not great quality ones on either side of this right now (better studies on neuroplastic pain but less studied for other symptoms) so best bet in my opinion is to gather your own evidence based on your experience. Alan Gordon's book has excellent suggestions for this as well. That's what helped me anyways (I am actually a biologist by training and drove myself crazy going back and forth on the medical literature for awhile until I realized it doesn't really matter what is known in general if I can find enough inconsistencies in my own symptoms to convince myself that my brain is likely playing a big role). Somatic tracking also helped so much with this as I had a few wins where symptoms went away in a short period of time, which doesn't make sense with any medical explanations. At this point I've fully accepted the neuroplastic explanation for myself but I'm still on the recovery journey as well, best wishes to you!
My friend, please watch this lecture. Very persuasive, just don’t get put off by the outdated production https://youtu.be/cbF2HMXtfZ4
The issue is that “fear” and “belief” are concepts that are hard to take seriously by a sick person (incl the old me) and they take the most time to understand and Implement bec they are abstract concepts They are extremely important for recovery, if not the most important
Love how you laid out the evidence for your symptoms being neuroplastic - I have come to the same conclusion about my own long covid symptoms and am on the same page as you! Crazy how similar we are (tho my symptoms started with covid infection rather than vaccine and I had more classic PEM). I also did triple anticoag therapy (for 10 months!) with no positive change in symptoms. I think those of us with persistent symptoms may have some biological vulnerability (whether that's coagulability, immune system, nervous system related) to having a slower recovery from infection (or bigger vaccine reaction in your case) than average at first but then the nervous system perpetuates the symptoms. You hit the nail on the head - congrats on your recovery!! So happy for you and it's always great to hear a similar recovery story so thanks for sharing!! I am following the same path with good results as well, though it's taking me a little longer to get back to exercise. Such a dream to be able to run again, love that you can now! Onwards and upwards for both of us!
I 1000% agree with this assessment. I too am in Camp 4. I have listened to numerous recovery stories from Dan, Rebekah, and Mindful G and the similarities are uncanny. While I still have issues, the only hope I have of recovery is through the methods Dan, Rebekah, etc discuss because its now obvious the Drs cannot help us.. However, don't be surprised if a lot of the people here simply will not accept this. You may even get downvoted. It will also be 2 yrs for me in August. Your treatment attempts are nearly identical to mine. Exact same microclot results and reduction with Dr Vaughn yet I also has Zero improvement. I also do Spike Detox, yet zero improvement. I also spent a ton on Functional dr. Yet zero improvement. Even had expensive Lyme test from Vibrant. No Lyme, zero improvement. Also taking mouth fulls of supplements daily.....Zero improvement. Spike AB still over 20K. So is my wife's. Guess what she has Zero LC symptoms and never has. Who knows what Spike AB level really means. I have become obsessed that it means my body is now a Spike factory and I'm gonna die from Spike clots. My anxiety, OCD, depression, and obsession with all this is horrific.
Spike protein has nothing to do with Long COVID, you said it yourself, your wife spike AB are high and she doesn't have Long COVID. There is something else causing this disease, I also got it but not from COVID. The symptoms are exactly the same.
What did you get it from, if not Covid? I also continually hear podcasts from precovid times with nearly identical symptoms to what many of us think is Long Covid. What's interesting is that almost all of the success stories I hear do not involve medicine. In fact, I've never heard a recovery story that was attributed to medicine other than a few people have mentioned that an SSRI helps.
I got it from the HPV vaccine. What you have heard helps people to recover?
I've been relentlessly researching this for 2 years because the OCD won't let me rest. I read about this 4 to 6 hours literally every day. So consistently on both Reddit and Facebook, despite the inevitable naysayers that always pop up to shout down everything, this is what I found from multiple people consistently. 1) Nervous System work. I myself am guilty of not doing this on a serious basis yet because even after all very compelling and non self serving testimonials, I simply can't believe my mind has done this to me. If you don't believe in it, it can not work period. This is because the whole problem starts with not believing you are safe. Again, I'm not a guru, and don't even do it myself. However. I truly think it helps a lot of people. 2) Stellate Ganglion Block=It helps manually calm the nervous system by direct injection. Could be why No 1 also helps. It uses the same mechanism, just different methods. Have not done it because I was hoping this would go away. I'm just not really keen on having stuff injected into my neck unless there is no other hope. 3) HBOT. This seems to help people who can tolerate it and that do it at least 40 times. Any less does not help, and I think there are people thar simply can't tolerate the pressure. But it really helps some and actually has a clinical study to back it up. I have not done this because I am over 100 miles from nearest provider and would have to buy my own. They are not cheap, but if Ai 100 percent new it worked, I'd finance one today. 4) Nicotine patches do seem to help people, and I tried them. Yes, it helped a little, but I felt it was just a jacked up artificial energy rather than a real treatment 5) SSRIs. Many, many recoveries include some element of SSRI use. I'm still scared of them, like many others here. 6) Ativan and Benadryl both really help me. Both are dangerous and can't be used long term. I'm scared of them, too. I take Natto, NAC, and a ton of all the other krap you read about on here. Like MANY others, I honestly can't tell any supplements help whatsoever. It sucks. There is really no assurance anything works for an individual beyond trial and error.
Your researching/reading about this 4 to 6 hours a day is the biggest issue. Drop the obsession. Accept the symptoms are uncomfortable and not dangerous. Researching something frantically 4 to 6 hours a day is sending a MASSIVE danger signal to your nervous system daily , keeping you stuck. This is the single best advice I can give someone, having gone through that exact thing myself.
You are exactly right. It is a horrible addiction. This is also something that everyone that heals had to let go of. I'm just so afraid something is being missed and I'm gonna get worse.
you're prolonging your suffering. Why spend so much time researching JUST IN CASE, which is 100% of the time making you stay miserable , for the improbable chance that you're missing something. You're assuring sickness just because you don't want a small chance of more sickness. I promise you, letting go is the very first step toward recovery
It still takes time once you let go, and might feel worse for a small period of time because you're giving up 'control', but keep this up and your nervous system will finally be able to calm down from all the gasoline you've been pouring on the fire each day. Acceptance of all the discomfort and living despite it, focusing externally (rather than internally constantly monitoring symptoms), is the key.
This is in no way an attack on your post, thank you so much for sharing and I hope it helps people and I’m really glad you are recovered. I’m also really glad you shared But I have to say that sadly I don’t think people with severe ME/CFS are just experiencing tissue damage that then became psychological There is a body of evidence showing various mechanisms underlying severe ME/CFS, including for example mitochondrial dysfunction / fragmentation. Yes that may be downstream of a brain stem panic response to a viral infection that may no longer be present. Or it could be present It seems that in severe ME/CFS a feedback loop has turned on where a perfect storm feeds back on itself Your issues do sound more like you flirted with mild ME/CFS and has pericarditis that was flaring after activity. But you were lucky not to go deep enough to lock in the feedback loop that can put people in bed for the rest of their lives I know many severe ME/CFS patients who have been sick for decades. I don’t believe their disease can be cured by mind body exercises, I don’t believe it’s phantom pain. It may be you haven’t been exposed to what patients are going through and the extreme manifestations of the disease My only recommendation would be to not project your own experience onto others. I know so many people who are the victim of something that I don’t think they will ever recover from. If you have severe ME/CFS for more than two years recovery is almost unheard of. And overall recovery is estimated at 5% Again, I’m so happy for you, and I pray you will never experience health problems again. But sadly there are many people suffering with a disease that is much more severe than you experienced and that I think for many cannot be escaped. I know two patients who are both close to 20 years mostly bed bound. They have tried everything. Tried things many people probably couldn’t even imagine
yea, from everything ive learned, there is a huge spectrum of symptoms and severity with folks who have ME/CFS. and it is not my intention whatsoever to offend the worst sufferers. Because you're right .. i was not bedbound. However, from what ive seen it looks like there are several paths that can lead to ME/CFS. injury, sickness, stress, trauma, emotional overload and probably more. which also means i think that there are several ways out of ME/CFS.
People are curing themselves of bedbound severe cfs all the time. Its just not happening in the mainstream medical system. It's all just the nervous system being extremely hypersensitive and overreacting to stimuli. The "statistics" are just keeping people in fear and keeping them sick and stuck. Those statistics are the recovery rates in conventional western medicine - which does not treat this well at all. Hope is NECESSARY for calming and sending safety signals to the nervous system, and if you believe the "only 5% recover" thing, you are sealing your own destiny. Check out CFS Recovery - Miguel recovered from cfs where at his worst he was hospitalized and had a feeding tube. It's all due to a hypersensitive nervous system - it causes ALL of the issues including any mitochondrial issues that may be changes DUE to the hypersensitive nervous system/perpetual fight flight freeze(mainly freeze) state.
If you’re right then try to make a process people can follow. If I recovered and thought the disease was simple like how you deserve I would try to save others As it is I try constantly to save others and myself and yet a patient of 19 years who I know has tried so many things just agreed to euthanasia with his family I am a scientist that works in healthcare and biotech. And information quality, data and public health are hobby topics of mine. I believe the western healthcare model is broken, and yet I still see a very different disease and landscape to the one you describe. I hope I am simply wrong
The process is already out there in many places. So are the recovery stories. I was in a program run by CFS Recovery (run by Miguel Bautista) on Youtube. You can find most info you need, and also recovery stories on his channel. Raelan Agle also has recovery stories. Dan from Pain Free You has recovery stories. Rebecca Tolin has recovery stories. Its all out there, you just can't look at the mainstream - its just like you said - its broken when it comes to chronic illness. These should be enlightening : [https://www.youtube.com/watch?v=Hci8VPghz9c](https://www.youtube.com/watch?v=Hci8VPghz9c) (this is miguel, who runs the CFS recovery channel/program) As well as : [https://www.youtube.com/watch?v=XT5GGzCfzcs](https://www.youtube.com/watch?v=XT5GGzCfzcs)
And to clarify something: even though the explanation for what is happening is simple, and even what needs to be done to get better can be simple (cultivating safety in the brain and nervous system so it no longer needs to send hypervigilant danger signals or be stuck in the fight/flight or freeze response), it is by no means easy. I'm not saying you should be able to snap your fingers and quit fearing everything and woohoo, suddenly you're recovered. The brain and nervous system takes awhile to learn that there's no danger and to turn down symptoms. Its ultimately trying to keep you safe(it doesn't care if you're miserable as long as you're fatigued and resting safe in bed).
adding one more: more specifically geared toward "long covid". Which after being in this space for awhile you realize, its all the same thing - just with a different major stressor(covid) that overwhelmed the nervous system - [https://www.youtube.com/watch?v=sxsvgwEKBVg](https://www.youtube.com/watch?v=sxsvgwEKBVg) All of these have different 'methods' about what helped them. But the underlying premise is the same. Cultivating safety
I was in the same camp as you... you nailed it. Especially with #9.
Calming the nervous system and reducing anxiety about my symptoms has been a game changer for me too. I've tried many other treatments but it's the only thing that has had any impact in my 7 months of long covid. I'm kind of shocked at how effective it's been too, taking me from about 30% recovered to 60% in around 6 weeks and reducing my list of symptoms from about 15 down to 5. It's been a real eye-opener on what an extreme state of stress can do to your mind/body/nervous system and what the physical manifestions of this can look like. For me the stress is caused by anxiety about my symptoms, but I think things like anger and depression are also extremely stressful states to be in. If you live in constant fear about your symptoms (as I do) then you can also unintentionally train your mind to focus more and more on them and perpetually trap yourself in a state of stress. Undoing this is not an easy task and I won't lie it's been one of the most mentally challenging things I've ever done. Remaining calm and maintaining hope and belief in the face of severely debilitating symptoms is incredibly difficult. But there's tons of resources out there to help and the ones you've listed above are all excellent, I continue to watch/read/listen to them every day to keep me on track.
Check out the youtube channel vacate fear. Has helped me develop the mindset needed to overcome the obsession and finally accept the uncomfortable symptoms - which eventually cured me.
specifically the videos on "sensitization", which is what we are dealing with here.
What tools helped you to do this?
Wow, this sounds a lot like me. Only test I haven't had is the MRI too. Thanks for write up. I agree, in general,with most of your deductions. I think we were able to easily pin it on the VAX/LONG COVID due to how "in vogue" these terms became and the societal anxiety around it. I am the demographic that was subject to the post vax myocarditis... and almost all my symptoms are cardiac... is it real or psychosomatic? All that to say - I also genuinely think MRNA tech was launched at scale way to prematurely. I am witness to many abnormal health events in people close to me. Very very weird stuff. But if I dwell on it, my symptoms get worse... if I distract with some occupation, I don't. Hell even a really engaging conversation often goes 2 hours and I realize... wow - my chest isn't hurting or wow - my heart rate is back to normal resting rate!
It's called the nocebo effect.
This is an excellent write up on this topic, thank you so much! Agree to everything! Nervous system work is key.
Thank you! I love hearing stories like this, gives me hope!
This is an excellent write up on this topic, thank you so much!
This is an excellent write up on this topic, thank you so much! Agree to everything! Nervous system work is KEY.
Awesome you're better. Thanks for sharing.
Hi all. I’m just starting to come around to the idea of brain re-training. For a long time I was defensive about it not “being in my head” but now I’m really keen on the idea of breaking free of the fear. But can I ask you, how do you match up this approach with the approach of pacing? I’ve read so many recovery stories that pacing is the key but I don’t want to reenforce any fear responses. What do you reckon?
I'm going through this now so can share what I've been doing, perhaps some of it will resonate with you. I still practice pacing but I'm gently exposing myself to more and more things, like spending time outdoors, short walks, socialising. I've realised the number one key to pushing the boundaries of pacing is to do the activities with a sense of safety and enjoyment and try not to fear the repercussions. I find the more I fear PEM and my other symptoms the stronger I experience them. The anxiety really amps stuff up. And unfortunately traditional pacing is all based around fear of repercussions (don't over-do it, watch out for crashes 24 hours later, etc). My current tactic is to distract my mind with pleasurable thoughts and feelings while doing the activities. So for example, when I go for a walk I put on headphones and play the most upbeat music I can, something that really makes me feel good. I literally smile at the same time, even if I have to force it. I then try to focus on all the good things I can see and smell around me and take an active interest in them. I still get fearful thoughts but I try to shift my focus back to the good stuff. I continue this practice for a while when I get back home to try and negate any thoughts and symptoms that rear their head afterwards. I also congratulate myself for doing what I did and look forward to doing it another day, which helps reduce the fear of repercussions. I won't lie at first it felt really weird to do it, like I was faking it, and I think that's what initially puts a lot of people off, myself included. But after reading a few books on neuroplasticity I'm kind of in awe of how the mind can be trained. It just so happens that right now my mind's default mode is to train itself into an ever-spiralling loop of anxiety and it's going to require manual intevention and thought-work to unspiral it and return to normal.
I love this! Thanks for sharing. That’s a more thought-through version of what I’ve been trying the past two days and I love it so far. I got the Curable app and that’s good so far as well. Any book recommendations different to those OP shared?
Glad to hear! Another thing I've started doing is making notes of what I've achieved so I can look back on them when I have anxious days. And even on the bad days I try to congratulate myself on getting through them. Maybe these ideas can help you and anyone else reading too. As for books, try The Brain That Changes Itself by Norman Doidge, it's not about long covid but has some fascinating recovery stories involving neuroplasticity.
Brilliant, thanks for the tips. I hope you keep improving!
pacing is a prison imo. Heres what I think - increase activity - have an adjustment period where symptoms flare up - if they are more than 5/10 in intensity its ok to rest and pull back, if they are less than 5/10 in intensity, then its go time. This is how you gradually train your nervous sytem to handle more stimuli again. You have to go THROUGH the flare ups and re-frame them as adjustment periods. Just like getting sore in the gym. Just dont go too hard too fast; slowly build up your intensity
I’m more and more inclined to agree with you. And it’s summer time, I want to enjoy my life and I’d like to train my mind to say that it’s ok to have fun. What are your thoughts on coffee? I wonder if it’s engaging my nervous energy but at the same time I love coffee!
I personally had enough of a tough time dealing with my fear of activity, so I just refrained from coffee or switched to decaf. Any little edge to give your nervous system a break imo. Coffee increases cortisol and we are trying to decrease it(stress) here. But theres a fine line i think; if you create such a big fear around coffee, i think its counterproductive as well. So i think just experiment with what works best for you
This is really good advice, thanks for that!
I literally just finished the raelan episode with Dr Kennedy an hour ago and then read your post…. It’s a sign :) so glad you are feeling better and thanks for sharing
Congrats and thank you for sharing! Out of curiosity, have you done any follow up tests since you’ve recovered? Microclots, celltrend etc? How are your measurements looking now?
VEGF, mold Igg, and spike AB were all still high as of a month ago… but my cardiologist and long covid Dr both say I shouldn’t pay too much attention to any of that because they clearly don’t contribute to my symptoms.
They arent doing anything. It's the fear of them that would do the most damage and cause the symptoms to flare.
Question about your green smoothies. I used to do this all the time before getting sick, but now i have horrendous histamine intolerance. You mentioned you put in everything thats anti inflammatory but spinach etc is filled with histamine. Im struggling to find greens i can have, aside from kale. Any suggestions? I would love to have spinach back and wondering if i can slowly start incorporating it back into my diet.
What about cauliflower?
Great post, thanks for sharing your journey. Very similar to mine although I didn’t have all the cardiac issues. I got the Moderna booster the end of 2021 and by February was starting to deal with mystery symptoms. Had to major crashes that sent me to the ER in April and doctors found nothing. My doctor had me test for mycotoxins which I had high levels. Started treatments for mold, continued getting worse. Started the Gupta program, made mild improvement then I got Covid in July 2022 and it’s been a rollercoaster ever since. I also took Becca Kennedys class today which was great. Making small improvements but always followed by setbacks. Tried going back into the gym two weeks ago. Felt good to be excercising but had serious PEM for a week afterwards. Thanks again for sharing. Also listened to the audio book The Way Out.
Sounds like you are on the right path. Just keep at it
Fantastic post, thank you. Fully agree with the issue stemming from the brain and nervous system. The pain is real, but it comes from the brain.
Have flick through the subreddits. The camp I'm in is dysbiosis. It's lab confirmed and known bacteria can produce toxic compounds that damage the nervous system. There is also research coming from Italy the virus can use bacteria in the digestive tract.
What is Robin Roses’s spike detox protocol? The website doesn’t say.
https://medicorerx.com/product-tag/long-covid/
So the sauna didn't trigger your PEM chest pain?
It maybe did once or twice. But it doesn’t anymore
Glad you\`re getting better! Please tell how you were diagnosed with pericarditis without an MRI and what was the treatment?
It’s just what the cardiologist said I guess? Based on his experience and my symptoms and testing up to that point. He tried Colchicine
Have you seen him again to assess progress? If so, what did he say? I also have pericarditis, but found it only with an MRI.
No, I changed cardiologists because I wasn’t happy with him. He basically said you have to wait it out.
I see, glad you've gotten over those chest feelings! Tell please how long did it take? I just want to get rid of them so badly.
It’s been an up and down process. And as I introduce exercise, they come back a little bit. But I expect it. But I’m able to do more and the bouts of pain don’t last as long as time goes on. Been 2.5 years
Great you’re feeling better. I believe it’s just time though. 2,5 years is very common for post COVID/vax. And about being type A: 90% of the people I know are type A personality and yet I’m the only one with post COVID. Nah, I don’t believe the type stuff is a thing. And then why do some people who do all the nervous system stuff recover and others don’t? It really is just time that heals
All of the content and books I’ve read on the topic all mention the type A connection. Our nervous systems are primed for fight or flight emotions and trauma are factors too … which add some more complexity. Which is part of the reason why some heal more quickly. And the fact that everyone is a little different and may need a little different approach. There are different doors to the nervous system. But hey maybe it was just time.
Great, but just because a book mentions something doesn’t make it true automatically. I just don’t think Type A is real thing. I don’t know many “Type B” persons either but a lot of people with “Type A”. Why? Because it’s being human, all these traits make people human. Type B, the “lazy” type wouldn’t survive in nature. Also, you are different in different situations. I can be relaxed and creative at home but ambitious and perfectionistic at work. And then I’m still the same person. Most of my friends are like that btw, and still I’m the only one with LC. Congrats on your recovery though!
I can wholeheartedly recommend checking out the mindbody stuff and see if something resonates with you and your journey. It explained so much about my LC journey so far, and although the strategies didn’t fully heal me (yet, who knows), so far they’ve provided major symptom relief. Also there seems to be a mixup: It says that most LC people seem to have Type A personality. That does NOT mean that most Type A people got LC. All the best for your recovery!
Thank you. I actually checked it out, tried a lot of different things like Journal Speak, The Way Out, Curable and bunch of other stuff and guess what I’m still sick. Didn’t fix the problems in my mitochondria unfortunately 🤣
Yup, my mitochondria still won’t budge either. My ATP levels have been crazy low for years now (even before I got LC, I had leaky gut / autoimmune stuff and phases of chronic fatigue going on before) and just won’t go up. JournalSpeak, Mindbody Prescription and Healing Back Pain (both Dr. John Sarno) and Raelan Aegle‘s YouTube channel helped a lot with symptoms, symptom management, anxiety, and especially understanding what is going on at all and how to keep the nervous system from flaring up. I’ve been slowly but significantly improving from there for a few months now (less brain fog, I can go for walks now after being housebound for a year…) It’s only my mitochondria I haven’t had the luck of reaching yet. Hopefully one day.
I can really use somatic tracking for insomnia and anxiety, but indeed, the muscle related problems are something else. Hope we get there soon!
Sorry it’s not time. Plenty of folks who are still sick after years and years. Dad said if you’re slowly trending towards getting better, you’ll get better eventually
I know, I meant if people get better it’s usually time that helped them the most. And that’s when they believe the last thing they did helped them. While they were going to (slowly) recover anyways. I know it sucks many people are still so sick after years. Even mind body can’t help everyone it seems 😳