The LDN did not work for a lot of folks, sadly. I'm coming up on about 3 years and 8 months of LC after the Delta variant tried to kill me and snowballed into over a 100 symptoms. I've improved but lost who I used to be. Apathy, herbs/supplements, and trusting God is the way I cope.
I caught Delta too In early 2021 There was no TX available while I was in the thick of it and the off label drugs like ivermectin and hydrochloraquin were not available after the vaccine so we all know the politics around the vaccine and cheap repurposed drugs
Almost cried when she talked about dancing again 🥰🥹 Love that she shared that even at the end of recovery she felt fear of still being sick. So let’s not be hard on ourselves even when we are afraid because we can still recover. Do it messy 💯
People with these chronic disabling illnesses should allways keep hope . Beyond our perception, beyond all our efforts to become well is the brilliant, resilient physiologic machine we call the human body. Millions of years of evolutionary development is in all of us. It's how we survived countless prior pathogens and are still thriving today. Support the body with proper diet,rest, emotional support, physical activity as tolerated and give it time . The human body will be triumphant. Thank you for these podcasts.
I couldn't agree more that we push grief down, and try to paste a "Happy Face" on natural and healing emotions. I had 10 major griefs and losses -- including my health -- in one year. I'd run from grief in the past, which I know contributed to my symptoms. This time I went to a grief counselor - which was wondrous! I did a grief ritual, which released DECADES of grief. It felt like washing away old stagnant places. Grief became an old friend, and I now know how to grieve healthily. (It doesn't make it easy - grief can hit you like a tsunami - but I found it FAR easier to sit with it for a time than I ever did trying to shove it down and run from it.) I also LOVE that she too got back her dancing! I too loved to dance, and did it since I was in my teens, taking classes in everything from ballet to Afro Jazz as a young actor. Losing that for 20 years along with my health to what I told was CFS/ME and Fibromyalgia was huge. But no-one ever asked what had happened BEFORE all these symptoms. The answer was 19 major stresses and 4 traumas! Instead they prescribed pills that harmed instead of helping - disabling me for two decades. Until I tapered OFF benzos and an antidepressant prescribed for the pain and insomnia of MEFM - and to my astonishment in 6 months began to recover my health! It took me two years - but I literally went from crawling - my blood pressure was so "incurably" low - to dancing! By listening to mind and body, soul and spirit, I healed intuitively by 80% for 6 glorious years. I DO get what Melissa is saying about her ghost returning. I felt like all that makes me "me" - the soul selves who danced, wrote, functioned in the world - were torn from me wandering the Underworld. One by one they returned - and the bliss was indescribable! Alas, more inescapable stresses and the biggest trauma of my life came my way, and I relapsed. Then I discovered trauma research and healing work with Peter Levine's and James Gordon's books and videos, which helped hugely. Then the missing piece of my healing puzzle - mind/body work, brain rewiring, and calming the central nervous system. So many issues have resolved - though after 54 years of having "MEFM" it will take more time - but I feel SO inspired by all the people who've recovered completely - even long-termers like me! This time I hope to beat my record and recover fully! I already recovered from Long Covid symptoms myself. Thank you, Melissa and Raelan! The videos are SO helpful and inspiring. With your help and all the wondrous brain science out there and somatic tracking videos, complete freedom from chronic pain and extreme fatigue are now within reach! I've already climbed most of the mountain and the view is good from here. But the top is in sight - and I can see you all waving from up there! Again, many thanks for all you do, Raelan, and the wonderful people you interview who have made it through and out the other side.
I'm so sorry you had to deal with all that hardship, but I'm so glad you're on the upswing now 🧡 🧡 Much love and wishing you all the best in your recovery!
@@RaelanAgle Thanks, Raelan. So long as I am dancing, singing, and writing, life it rich and good. Slowly but surely, I am recovering - and when a major stress is over, I expect quantum healing once again. Thanks for all the work you do!
Thank you Raelan, for giving me space to share my story and providing us all with so much hope, support and possible solutions. And thank you to all the viewers who left such kind comments below. I've noticed quite a few questions about LDN, so I wanted to answer them in more detail here. I increased my dosage of LDN slowly from 0.5 to 3.0/3.5 mg over the course of about 6 months. I probably could have gone faster than that, but it was the timing that wound up happening with my doctor. I noticed the change when I hit 3.0/3.5 mg (sorry, I can't remember which it was!) I was having several days at a time where I felt really "normal". Over the course of the subsequent 5-6 months, I got up to 4.5 mg before I stopped taking it completely. That was the max dosage another one of my doctors had recommended. I noticed no difference in my health after stopping and just kept getting better. It's been about 6 months now since I stopped taking it. In that time, I've gone to Havana for 10 days of dancing, recovered from a covid infection, and embarked on my monthlong Europe trip. I hope this helps! Sending you all love and strength as you heal from this illness ❤ ~ Melissa
Thanks for giving more details about LDN, Melissa. Did you have to slowly wean yourself off the LDN? If so, what did that entail, please? I do hope to recover one day and not need to be on LDN anymore also, that's why I'd be interested to know how you were about to get off it. Thanks again!
Thank you so much, Raelan and Melissa. Stories of hope are such a gift! Who knew how important *HOPE* is in the process of healing?! I lost my taste and smell due to c19. I have about 10-15% of it…that has been a real grief! I’m new to your channel and don’t know if you’ve had anyone on who recovered from this issue? I would SO appreciate help related to this. Thanks so much to both of you!
It seems that Melissa had a high motivation to recover because of all her passions and interests calling to her! It really does help to have a 'lighthouse' that beacons to you what it is that motivates you to put in the paces of your recovery plan. Also, having a testimonial on Raelan's channel and/or elsewhere can be a 'lighthouse' in and of itself as a marker for having made it to the other side.
This is so true! I never really thought about it this way, because in many ways I blocked out dance from my life for nearly a year - it was too painful to face the possibility of never getting it back. But, it was an underlying motivation for sure - I remember telling my best friend that I was stopping dance so that I COULD dance again someday. I love the symbolism of the lighthouse - that's beautiful! ~ Melissa
Most people seem to talk about pacing as an unpleasant thing their chronic illness forces them to do. But she seemed to talk about pacing and rest as an important part of her recovery; as healing things. So I found that interesting.
Interesting observation! I think ultimately I have embraced pacing to a certain extent - I find myself doing it naturally now even though I don't have to worry about PEM anymore. Honestly, in our rat race culture, I think it would be a helpful concept for a lot of people! :) ~ Melissa
I started fostering cats too - it was such a nice outlet and distraction (kittens are the best!!) and allowed me to continue using my acts of service side without the physical stress my previous acts used.
There were so many times I felt like Melissa was narrating my journey and my thoughts and feelings. Her perspective was so moving and insightful. Alot of things she said hit me to the core and gave me so much hope and motivation. I can't thank her enough for sharing her story. I've watched so many videos over the years but have never been so moved and connected. I held back tears many times. I am a former athlete whose identity was really tied to what i could do physically and the heartbreak of losing what you love and ultimately yourself is devestating. Not to mention the agony and constant fear of never getting that back. Thank you, Melissa for sharing your story!
Thanks, Melissa! I've made so much improvement in the last year -- gaining much of my life and abilities back. Being able to swing dance again is one of the pieces that will really confirm my recovery for me. Two years ago it would have been an unfathomable goal, but I know it will come. It was great to hear your return to dancing as an encouragement to keep going on my recovery journey.
Thank you so much Melissa. You give me hope. I’m about to start the LDN treatment and I’m positive I will recover but I 100% believe that this has been a spiritual journey for me too.
Hi Louise, it's Melissa :) I'm glad that you feel hopeful, and I hope that the LDN works for you! This is definitely an intense journey with a significant mental/emotional/spiritual component. Sending you lots of love and strength!
LDN, works. However, it requires the low & slow approach. Going to fast will give you bad dreams & not help. It's important also to use a reliable compounding pharmacy. When you do your research, you will see that the neurologist Dr. Bihari (who figured out it's benefits in the early 1990's). He noticed some people got better & those that didn't used a bad compounding pharmacy. Also, every one is different at when it will kick in & help. A women in England with MS took 2 yrs before her MS was reversed.
Glad to hear more about LDN, I'm waiting mine to arrive to start. I was wondering if she upped her vitamin D as that is recommended to make LDN more effective. Apparently it has some calming effect on the nervous system. Her passion for dance was something really interesting to listen to as-well.
Love this video. Ldn was really helpful for me too. But I also started cold plunging and breathwork at the same time so I'm not sure. Acceptance was huge and I leaned into the Buddhist idea of "identify" which basically is that who we think we are is very far from who we actually are and clinging to things that we have lost obscures the possibility of creating and rebuilding identity. I'm a different person now. I like who I am so much more post long Covid
This is beautiful! I'm still figuring out who I am now - but I know that having LC changed me forever, in many ways for the better. Love your perspective and that you like yourself so much more now! ❤~ Melissa
Ldn did seem to help me. I was on it for about a year before stopping and it seems like my symptoms have ticked up a bit since stopping. It was not a cure all but part of the equation as all the interviews on this channel would suggest. It is a total picture including physical mental and mind body approaches. Good luck everyone.
Bless your heart Raelan. I can't believe how much I need to hear someone say "life altering illness is devastating"... It makes me feel validate and brings me to tears. The grief is so real. One time when I was in a devastating down period, bedridden and all alone, I had called my grandmother and I told I NEED empathy. I told her exactly what I needed to hear which was "I am so sorry you are going through this; it is truly awful". I was distraught, and she really just could not understand how I couldn't just get on with life.
You're not alone I too am at the point where I'm literally asking my loved ones to learn just a little about LC/MECFS but pushback...they just don't understand and say "do not send me any videos" etc. I'ts causing me extreme distress in alt my lowest point which I'm trying to explain to them the best I can but they still say "make a choice" to be better. Sorry my brains not working but I just want to say I totally relate. Have u tried any meds or supplements? Hugs & 🙏🙏🙏 to u, stay strong!!! In consolidation- 🫶
@@kimrider7204 Ah, the "just think yourself better" people. If that were possible we'd all be well! So sorry you're experiencing that. Mine were willing to read the odd article, and that ultimately helped them understand more - but they stil expected me to do everything I used to. I tried meds AND supplements, which did nothing or harmed. Only when I quit all medications and began facing the trauma, grief, and emotions behind the symptoms did I start to get lots better. Somatic tracking videos help hugely, as did Chi Gong, journaling, and walking in nature. Best of luck - people ARE healing by rewiring their brains and learning to calm their nervous systems!
Thank you, ladies!🌺I love hearing recovery stories! Well done to you on your recovery, Melissa! I'm so happy for you! I'd be interested to know what dose you reached on LDN, please, Melissa? I'm on 4.5mgs and have contemplated increasing it further, but also feel a bit cautious about doing so.. I reckon you could become a professional dancer one day if you wanted too, Melissa! 💃💃Best wishes, Jo. 💃🌺
Hey Melissa (if you read this!), I found your story so inspiring as a fellow passionate, active person who is finally practicing radical self care. So thank you for sharing. You have a palpable radiance! I’m curious if you stayed on LDN through your reinfection? I’m currently trying to find a strategy to get through potential or inevitable reinfections without having a relapse, and I imagine dampening inflammation/an overactive immune response with LDN could do that.
A tragic story: A work contact of my husband, who is a young father was amongst three office colleagues who contracted COVID. The other two young men made a complete recovery but he sustained permanent deafness in one ear and has additional balance problems. No chance of recovery of his hearing but he will have an operation to attempt to regain his balance. I consider myself lucky, having lost 50% hearing in one ear but have now recovered. However, this year has been a roller coaster of minor illness and fatigue.
It's funny how people talk about having good days and bad days. In my experience of 1.5 years of CFS, the first 6 months were pretty much non-stop bad days. Maybe just a couple minutes of normal activity per day. A bit more now, but I still haven't had a single day yet, where I wake up feeling normal. But it's ok, we all have unique journeys.
I'm almost 5 years in now, I'm slightly better than 2 years ago..but still exhausted, some brainfog, muscle wasting and pain are still my biggest symptoms, I still have many less crippling symptoms that I just live with now.. I was in a post covid clinic, they were kind but just as lost as I was/am about treatment. I haven't been able to work since November 2019.
I looked it up, and there were too many side effects and not enough known about it. Plus, I was suffering from benzo withdrawal, and it affects the same receptors damaged by the benzos. I mistrust anything that affects brain receptors. So many people have recovered, drug-free. The slow way is for me!
100% agree. Had rlly horrible antidepressant withdrawal and 10 years later still nerve damage. They (doctors and pharma) to this day dont actually know how antidepressants work. Parts are just theory. Negative studies get retracted or ignored etc. Good luck getting better ♡ also there are herbs often with similiar function and safer imo.
I wonder if some of us that didn’t rest for long enough during and after our Covid infections caused issues, I do wonder if I would have recovered quicker if I rested longer
I believe that is the case. For example, the advice with mono or epstein bar is to rest for 6 weeks, and from what I have heard that if you do not rest you can have it for years. Sounds a lot like ME/CFS. I got my infection in 2014, and within a week I was like "well I should be well now; no sickness last more than a few days". I think then you are really stressing out your nervous system, putting it in survival mode.
I suspect there had to be nervous system issues BEFORE we got Covid. My sister went back to work after 4 days with no issues. I went back after 5 days, as it felt no worse than a flu - and developed Long Covid. But I was hypervigilant from birth, as I was 3 months early due to a major car accident, plus being bullied as a child. Trauma was already trapped in my body and my nervous system heightened when I caught Covid. I'm over it entirely now, thankfully - but I did a lot of somatic tracking and trauma work with books by Peter Levine. Now I'm healing from 54 years of CFS/ME and Fibro - and feel about 80% recovered. What a challenge, but what beautiful work - and these success stories help hugely when it's difficult. Best of luck!
Regular saunas helped me enormously with pain from fibroyalgia. I went from padding the hard wood with cushions to enjoying lying on the hard wood with just a towel. What a difference! Many of us are chemically sensitive, and saunas have been found to be wonderful for detoxing - and almost every other health issue. The Finns have done studies and they help with most health issues, and with prevention.
The aches and pains with neuropathy are from elevated VEGF aka vascular inflammation. The only 2 treatments that work are maraviroc/atrovistatin and triple anti coagulation therapy.
@@benji1868 I had neuropathy and venous insufficiency in my feet so badly I had to wear Ronald MacDonald clown shoes for decades. I got OFF benzos and elavil, prescribed for the pain and insomnia, and faced old trauma and grief - and now dance daily in ballet flats! Somatic mind/body work is a whole new paradigm of healing.
I had Parkinson-like tremors -- large involuntary movements of my head and limbs, especially in response to stimulus (lights, sounds or socializing). I was not tested, as I felt sure it was related to Long Covid. These were some of the most emotionally upsetting symptoms. They have basically gone away as I progressed in my recovery -- though I get some minor muscle twitching when I overexert. I had them for about 18 months until I could really find my true baseline for energy usage (which was extremely low ).
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The LDN did not work for a lot of folks, sadly. I'm coming up on about 3 years and 8 months of LC after the Delta variant tried to kill me and snowballed into over a 100 symptoms. I've improved but lost who I used to be. Apathy, herbs/supplements, and trusting God is the way I cope.
Agree, LDN did nothing for me except create bizarre dreams/thoughts during the night👎🏻
LDN flared my symptoms and dropped my O2 to 89 so I immediately stopped.
Im 3 years and 1 months in. You got me beat by 6 months :) I hope us super long haulers are going to find a way out of the fog.
@@AllOutOnlinehow did manage with O2 at 89? What’s the lowest someone can go?
I caught Delta too
In early 2021
There was no TX available while I was in the thick of it and the off label drugs like ivermectin and hydrochloraquin were not available after the vaccine so we all know the politics around the vaccine and cheap repurposed drugs
Almost cried when she talked about dancing again 🥰🥹
Love that she shared that even at the end of recovery she felt fear of still being sick. So let’s not be hard on ourselves even when we are afraid because we can still recover.
Do it messy 💯
Spot on, Marianne 🧡 🧡 Messy all the way!
Thanks for your comment! ❤I've had to learn so much more kindness and patience towards myself (and I'm still practicing it!) ~ Melissa
I miss dancing so much - 4 years in the longcovid journey ❤
People with these chronic disabling illnesses should allways keep hope . Beyond our perception, beyond all our efforts to become well is the brilliant, resilient physiologic machine we call the human body. Millions of years of evolutionary development is in all of us. It's how we survived countless prior pathogens and are still thriving today. Support the body with proper diet,rest, emotional support, physical activity as tolerated and give it time . The human body will be triumphant.
Thank you for these podcasts.
I'm taking LDN 4.5 mg. It has been helping me a lot with brain fog and fatigue.
I couldn't agree more that we push grief down, and try to paste a "Happy Face" on natural and healing emotions. I had 10 major griefs and losses -- including my health -- in one year. I'd run from grief in the past, which I know contributed to my symptoms. This time I went to a grief counselor - which was wondrous! I did a grief ritual, which released DECADES of grief. It felt like washing away old stagnant places. Grief became an old friend, and I now know how to grieve healthily. (It doesn't make it easy - grief can hit you like a tsunami - but I found it FAR easier to sit with it for a time than I ever did trying to shove it down and run from it.)
I also LOVE that she too got back her dancing! I too loved to dance, and did it since I was in my teens, taking classes in everything from ballet to Afro Jazz as a young actor. Losing that for 20 years along with my health to what I told was CFS/ME and Fibromyalgia was huge. But no-one ever asked what had happened BEFORE all these symptoms. The answer was 19 major stresses and 4 traumas! Instead they prescribed pills that harmed instead of helping - disabling me for two decades.
Until I tapered OFF benzos and an antidepressant prescribed for the pain and insomnia of MEFM - and to my astonishment in 6 months began to recover my health! It took me two years - but I literally went from crawling - my blood pressure was so "incurably" low - to dancing! By listening to mind and body, soul and spirit, I healed intuitively by 80% for 6 glorious years. I DO get what Melissa is saying about her ghost returning. I felt like all that makes me "me" - the soul selves who danced, wrote, functioned in the world - were torn from me wandering the Underworld. One by one they returned - and the bliss was indescribable!
Alas, more inescapable stresses and the biggest trauma of my life came my way, and I relapsed.
Then I discovered trauma research and healing work with Peter Levine's and James Gordon's books and videos, which helped hugely. Then the missing piece of my healing puzzle - mind/body work, brain rewiring, and calming the central nervous system. So many issues have resolved - though after 54 years of having "MEFM" it will take more time - but I feel SO inspired by all the people who've recovered completely - even long-termers like me!
This time I hope to beat my record and recover fully! I already recovered from Long Covid symptoms myself. Thank you, Melissa and Raelan! The videos are SO helpful and inspiring. With your help and all the wondrous brain science out there and somatic tracking videos, complete freedom from chronic pain and extreme fatigue are now within reach! I've already climbed most of the mountain and the view is good from here. But the top is in sight - and I can see you all waving from up there!
Again, many thanks for all you do, Raelan, and the wonderful people you interview who have made it through and out the other side.
I'm so sorry you had to deal with all that hardship, but I'm so glad you're on the upswing now 🧡 🧡 Much love and wishing you all the best in your recovery!
@@RaelanAgle Thanks, Raelan. So long as I am dancing, singing, and writing, life it rich and good. Slowly but surely, I am recovering - and when a major stress is over, I expect quantum healing once again. Thanks for all the work you do!
Thank you Raelan, for giving me space to share my story and providing us all with so much hope, support and possible solutions. And thank you to all the viewers who left such kind comments below. I've noticed quite a few questions about LDN, so I wanted to answer them in more detail here.
I increased my dosage of LDN slowly from 0.5 to 3.0/3.5 mg over the course of about 6 months. I probably could have gone faster than that, but it was the timing that wound up happening with my doctor. I noticed the change when I hit 3.0/3.5 mg (sorry, I can't remember which it was!) I was having several days at a time where I felt really "normal". Over the course of the subsequent 5-6 months, I got up to 4.5 mg before I stopped taking it completely. That was the max dosage another one of my doctors had recommended.
I noticed no difference in my health after stopping and just kept getting better. It's been about 6 months now since I stopped taking it. In that time, I've gone to Havana for 10 days of dancing, recovered from a covid infection, and embarked on my monthlong Europe trip.
I hope this helps! Sending you all love and strength as you heal from this illness
❤
~ Melissa
Thanks for giving more details about LDN, Melissa. Did you have to slowly wean yourself off the LDN? If so, what did that entail, please? I do hope to recover one day and not need to be on LDN anymore also, that's why I'd be interested to know how you were about to get off it. Thanks again!
Do you think LDN helped with mood too? Xx
Thank you so much, Raelan and Melissa. Stories of hope are such a gift! Who knew how important *HOPE* is in the process of healing?!
I lost my taste and smell due to c19. I have about 10-15% of it…that has been a real grief!
I’m new to your channel and don’t know if you’ve had anyone on who recovered from this issue? I would SO appreciate help related to this.
Thanks so much to both of you!
I relate to the grief and identity change and how it could impact our lives. It’s all so heavy and a tremendous undertaking we’re forced into.❤
Absolutely! It's a huge trauma. It so helps to know other people can relate. Sending you lots of love and strength! ~ Melissa
It seems that Melissa had a high motivation to recover because of all her passions and interests calling to her! It really does help to have a 'lighthouse' that beacons to you what it is that motivates you to put in the paces of your recovery plan. Also, having a testimonial on Raelan's channel and/or elsewhere can be a 'lighthouse' in and of itself as a marker for having made it to the other side.
This is so true! I never really thought about it this way, because in many ways I blocked out dance from my life for nearly a year - it was too painful to face the possibility of never getting it back. But, it was an underlying motivation for sure - I remember telling my best friend that I was stopping dance so that I COULD dance again someday. I love the symbolism of the lighthouse - that's beautiful! ~ Melissa
Most people seem to talk about pacing as an unpleasant thing their chronic illness forces them to do. But she seemed to talk about pacing and rest as an important part of her recovery; as healing things. So I found that interesting.
Interesting observation! I think ultimately I have embraced pacing to a certain extent - I find myself doing it naturally now even though I don't have to worry about PEM anymore. Honestly, in our rat race culture, I think it would be a helpful concept for a lot of people! :) ~ Melissa
I started fostering cats too - it was such a nice outlet and distraction (kittens are the best!!) and allowed me to continue using my acts of service side without the physical stress my previous acts used.
Your story gives me so much hope, that I will hopefully dance again too. ❤
You've got this, Kerstin! ❤️ ❤️
There were so many times I felt like Melissa was narrating my journey and my thoughts and feelings. Her perspective was so moving and insightful. Alot of things she said hit me to the core and gave me so much hope and motivation. I can't thank her enough for sharing her story. I've watched so many videos over the years but have never been so moved and connected. I held back tears many times. I am a former athlete whose identity was really tied to what i could do physically and the heartbreak of losing what you love and ultimately yourself is devestating. Not to mention the agony and constant fear of never getting that back. Thank you, Melissa for sharing your story!
My heart goes out to you, Juliana. 🧡 🧡 Wishing you all the best on your recovery journey.
Thanks, Melissa! I've made so much improvement in the last year -- gaining much of my life and abilities back. Being able to swing dance again is one of the pieces that will really confirm my recovery for me. Two years ago it would have been an unfathomable goal, but I know it will come. It was great to hear your return to dancing as an encouragement to keep going on my recovery journey.
Thank you so much, I've suffered since 1993.
Thank you so much Melissa. You give me hope. I’m about to start the LDN treatment and I’m positive I will recover but I 100% believe that this has been a spiritual journey for me too.
Hi Louise, it's Melissa :) I'm glad that you feel hopeful, and I hope that the LDN works for you! This is definitely an intense journey with a significant mental/emotional/spiritual component. Sending you lots of love and strength!
LDN, works. However, it requires the low & slow approach. Going to fast will give you bad dreams & not help. It's important also to use a reliable compounding pharmacy. When you do your research, you will see that the neurologist Dr. Bihari (who figured out it's benefits in the early 1990's). He noticed some people got better & those that didn't used a bad compounding pharmacy. Also, every one is different at when it will kick in & help. A women in England with MS took 2 yrs before her MS was reversed.
Thank you so much for offering these beautiful interviews Raelen! They are the perfect length and offer so much! ❤
Glad to hear more about LDN, I'm waiting mine to arrive to start. I was wondering if she upped her vitamin D as that is recommended to make LDN more effective. Apparently it has some calming effect on the nervous system. Her passion for dance was something really interesting to listen to as-well.
Thank you for sharing! Are you still on LDN or weee you able to come off of it?
I posted a separate comment to answer this! ~ Melissa
thank you for sharing your story!
Love this video. Ldn was really helpful for me too. But I also started cold plunging and breathwork at the same time so I'm not sure. Acceptance was huge and I leaned into the Buddhist idea of "identify" which basically is that who we think we are is very far from who we actually are and clinging to things that we have lost obscures the possibility of creating and rebuilding identity. I'm a different person now. I like who I am so much more post long Covid
This is beautiful! I'm still figuring out who I am now - but I know that having LC changed me forever, in many ways for the better. Love your perspective and that you like yourself so much more now! ❤~ Melissa
Congratulations🎉Melissa!
Thank you so much! ~ Melissa
Ldn did seem to help me. I was on it for about a year before stopping and it seems like my symptoms have ticked up a bit since stopping. It was not a cure all but part of the equation as all the interviews on this channel would suggest. It is a total picture including physical mental and mind body approaches. Good luck everyone.
Bless your heart Raelan. I can't believe how much I need to hear someone say "life altering illness is devastating"... It makes me feel validate and brings me to tears. The grief is so real. One time when I was in a devastating down period, bedridden and all alone, I had called my grandmother and I told I NEED empathy. I told her exactly what I needed to hear which was "I am so sorry you are going through this; it is truly awful". I was distraught, and she really just could not understand how I couldn't just get on with life.
I am SO sorry you went through that and I empathize. It's amazing how many people cannot listen compassionately to difficult problems. Much sympathy.
You're not alone I too am at the point where I'm literally asking my loved ones to learn just a little about LC/MECFS but pushback...they just don't understand and say "do not send me any videos" etc. I'ts causing me extreme distress in alt my lowest point which I'm trying to explain to them the best I can but they still say "make a choice" to be better. Sorry my brains not working but I just want to say I totally relate. Have u tried any meds or supplements?
Hugs & 🙏🙏🙏 to u, stay strong!!! In consolidation- 🫶
@@thedancingdivaofdaviestree2320 thank you. Empathy means more than I can say.
@@kimrider7204 Ah, the "just think yourself better" people. If that were possible we'd all be well! So sorry you're experiencing that. Mine were willing to read the odd article, and that ultimately helped them understand more - but they stil expected me to do everything I used to. I tried meds AND supplements, which did nothing or harmed. Only when I quit all medications and began facing the trauma, grief, and emotions behind the symptoms did I start to get lots better. Somatic tracking videos help hugely, as did Chi Gong, journaling, and walking in nature. Best of luck - people ARE healing by rewiring their brains and learning to calm their nervous systems!
Hearing a recovery story is such a boost for me. Thank you both for letting us hear your experience, strength and hope
Thank you, ladies!🌺I love hearing recovery stories! Well done to you on your recovery, Melissa! I'm so happy for you!
I'd be interested to know what dose you reached on LDN, please, Melissa? I'm on 4.5mgs and have contemplated increasing it further, but also feel a bit cautious about doing so..
I reckon you could become a professional dancer one day if you wanted too, Melissa! 💃💃Best wishes, Jo. 💃🌺
Hi Jo! I posted a separate comment about LDN! (and thank you so much for the dance encouragement and well wishes :)) ~ Melissa
@@FollowMyLeadTV You're welcome! Thank you, Melissa!
Hey Melissa (if you read this!), I found your story so inspiring as a fellow passionate, active person who is finally practicing radical self care. So thank you for sharing. You have a palpable radiance!
I’m curious if you stayed on LDN through your reinfection? I’m currently trying to find a strategy to get through potential or inevitable reinfections without having a relapse, and I imagine dampening inflammation/an overactive immune response with LDN could do that.
A tragic story: A work contact of my husband, who is a young father was amongst three office colleagues who contracted COVID. The other two young men made a complete recovery but he sustained permanent deafness in one ear and has additional balance problems. No chance of recovery of his hearing but he will have an operation to attempt to regain his balance. I consider myself lucky, having lost 50% hearing in one ear but have now recovered. However, this year has been a roller coaster of minor illness and fatigue.
It's funny how people talk about having good days and bad days. In my experience of 1.5 years of CFS, the first 6 months were pretty much non-stop bad days. Maybe just a couple minutes of normal activity per day. A bit more now, but I still haven't had a single day yet, where I wake up feeling normal. But it's ok, we all have unique journeys.
I would like to know how marriage dynamic changes and how the partners react to their husbands/wifes being sick.
I'm almost 5 years in now, I'm slightly better than 2 years ago..but still exhausted, some brainfog, muscle wasting and pain are still my biggest symptoms, I still have many less crippling symptoms that I just live with now.. I was in a post covid clinic, they were kind but just as lost as I was/am about treatment. I haven't been able to work since November 2019.
Thanks guys. Melissa are you still on the LDN?
I posted a separate comment to answer this! ~ Melissa
I needed this today. 4.5 years into long covid. I'm healthier than most, but my immune system isn't working.
Do you still take LDN?
LDN did not work for me. After four years of long Covid I’ve started to try methylene blue carefully and it is helping.
What is ldn?
LDN did zero for my CFS.
I am taking citalopram (SSRI). Took away the brainfog. Maybe that works for you to?
Unfortunately didn't work for me either. Was hopeful when I tried it, but no go.
I looked it up, and there were too many side effects and not enough known about it. Plus, I was suffering from benzo withdrawal, and it affects the same receptors damaged by the benzos. I mistrust anything that affects brain receptors. So many people have recovered, drug-free. The slow way is for me!
@aledi3239 SSRI's had horrible side effects for me with no benefit. The LDN didn't help but had no side effects.
100% agree. Had rlly horrible antidepressant withdrawal and 10 years later still nerve damage. They (doctors and pharma) to this day dont actually know how antidepressants work. Parts are just theory. Negative studies get retracted or ignored etc. Good luck getting better ♡ also there are herbs often with similiar function and safer imo.
❤❤❤
I wonder if some of us that didn’t rest for long enough during and after our Covid infections caused issues, I do wonder if I would have recovered quicker if I rested longer
I believe that is the case. For example, the advice with mono or epstein bar is to rest for 6 weeks, and from what I have heard that if you do not rest you can have it for years. Sounds a lot like ME/CFS. I got my infection in 2014, and within a week I was like "well I should be well now; no sickness last more than a few days". I think then you are really stressing out your nervous system, putting it in survival mode.
I suspect there had to be nervous system issues BEFORE we got Covid. My sister went back to work after 4 days with no issues. I went back after 5 days, as it felt no worse than a flu - and developed Long Covid. But I was hypervigilant from birth, as I was 3 months early due to a major car accident, plus being bullied as a child. Trauma was already trapped in my body and my nervous system heightened when I caught Covid. I'm over it entirely now, thankfully - but I did a lot of somatic tracking and trauma work with books by Peter Levine. Now I'm healing from 54 years of CFS/ME and Fibro - and feel about 80% recovered. What a challenge, but what beautiful work - and these success stories help hugely when it's difficult. Best of luck!
@thedancingdivaofdaviestree2320 That is a good point 💖
My partner thinks LDN helped his long Covid (and daily infrared saunas). Been almost two years and when he stopped LDN his bad legs were coming back
Regular saunas helped me enormously with pain from fibroyalgia. I went from padding the hard wood with cushions to enjoying lying on the hard wood with just a towel. What a difference! Many of us are chemically sensitive, and saunas have been found to be wonderful for detoxing - and almost every other health issue. The Finns have done studies and they help with most health issues, and with prevention.
Yes LDN only works while you take it!
The aches and pains with neuropathy are from elevated VEGF aka vascular inflammation. The only 2 treatments that work are maraviroc/atrovistatin and triple anti coagulation therapy.
@@benji1868 I had neuropathy and venous insufficiency in my feet so badly I had to wear Ronald MacDonald clown shoes for decades. I got OFF benzos and elavil, prescribed for the pain and insomnia, and faced old trauma and grief - and now dance daily in ballet flats! Somatic mind/body work is a whole new paradigm of healing.
Oh no she was jabbed and boosted😢
You got it easy, I had 20 pneumonias and live auffocated for almost three years...
Not easy at all.
@@mareikesommer2436 do you know how it feels to suffocate with COVID?
Did your symptoms seem like Parkinson’s? Did you get tested for Parkinson’s? Please let me know🙏🏽
I had Parkinson-like tremors -- large involuntary movements of my head and limbs, especially in response to stimulus (lights, sounds or socializing). I was not tested, as I felt sure it was related to Long Covid. These were some of the most emotionally upsetting symptoms. They have basically gone away as I progressed in my recovery -- though I get some minor muscle twitching when I overexert. I had them for about 18 months until I could really find my true baseline for energy usage (which was extremely low ).
@@sparrowcrow 🙏🏽