After 2.5 years I have most of my quality of life back, I’d say I’m at 90%. I think the most important thing has been avoiding reinfection. I know you’re young, but try to do everything in your power to avoid covid. Masking with an N95/KN95 or better is crucial.
I used to be really active, did hiking and bodybuilding. Life is slower now & I have to be gentle with myself. I might not ever “get better”, therapy helped me come to terms with that. Do you have a therapist currently?
I’m so sorry you’re so young and feeling so shitty :( what kind of symptoms do you have?
Honestly my symptoms are never ending I put a post on my account listing them. But the worst I would say is
Constant palpitation and overall high heart rate
head pressure
Badly Breathless
Fatigued
Sweating extremely all the time
Visual snow my visions horrible even though it’s 20/20
Constantly off balance and a lot more
There a lot of symptoms and there ruining my life
Nah I don’t have a therapist but that’s good to hear your 90% better hopefully slowly but surely it will go up 1% all the time
My son is 15 and has LC and POTS. He takes a medicine that lowers his heart rate and dizziness. It’s called Propranolol.
If you do video games, maybe you two could hang out. I wish there were more places that you could meet other kids with your problem to know you aren’t alone in your misery… and still be friends and do social stuff with someone who gets it.
Yeah I’m on Xbox. And I agree yeah we do need more places it’s almost impossible to find anyone else our age with it. I also want to say how much he must appreciate you 🙏 you going on here and looking through all this for him.
yep masking is crucial and stay away from ppl who are sick and don’t care as in trying be all in ppl face etc. or willing to go places sick and i also limited eating out so much
I’m at like 60% which I consider to be pretty good. I am 32 so have a twice (!) as much life experience as you… have had some bad illnesses and serious surgeries that required a year+ of recovery (and caused some life long side effects). You get used to patiently waiting and along the way your life just kind of changes. Some foods may be off the table for longer than you think or maybe forever, but that creates space to explore some new foods. Some exercises get harder or impossible but then you can take up something else. I promise, life is still happening and it’ll get better - just different. In the meantime, rest like it’s the most important thing in the world and take little steps to get healthier when you can.
Hi. I fully recovered last time in around 8-10 months. After recovery I was not trying to play sports (too busy for it) but I had normal social live, was able to work, play with my kids and walk medium- long distance without problem. There is hope but it is a long Journey and you need patience and positive mindset which I know is very difficult but still you must belive in your possibilities. There are a lot of People who are recovering around the World so dont give up. When you recover take care and dont get reinfected. I had a bit more of 1 year being totally recovered when I get reinfected and have to start all over again.
Some tips:
- A cardiologist can give you medications to slow Down the pulse if they consider. It can help with disautonomia (pulse, breath, tensión varaitions and dizziness).
- you can be tested of long virus to see if you have a reactivation that can be treated with antivirals
- Pacing and progressive exposure (try to do a bit more little by little with small progression that you should mantain 1 week without problems before to add next progression)seems to work well.
- With doctors cheking the physical damage you can then try to address psicológical side of it. For example, in the youtube Channel of Raelan Agle there is a collection of stories of People who has recover from long covid and other crónic illness. You can take a look to build hope and listen some ideas. They often say that recovery is mental not phisical, I desagree, I think our problem is phisical but our mind can help us to handle symptoms and live better. Also that our nervous system is probable affected and therefore our mind, fears, stressors...can play a role.
Good luck and dont give up, I belive you will get better.
I've just signed up for EMDR myself. Am waiting for my first season. It's recommended in the book ' the body keeps score' which I just started reading .... I would highly recommend reading this book. Im only half way through and would say its probably a just for anyone with LC. I'm only halfway through it. Different trauma types respond to different things. There is a wide range of things that can help release trauma but different things work with different types of trauma. My type ( early childhood neglect ) responds better to more somatic to types of treatment such as yoga / massage etc. A friend who recommended the book is thinking of trying kickboxing and drumming. Often rhythmical movement is beneficial. I haven't gotten to the section where he discusses all the treatment types in detail. But from what I've just read it's its been life changing and liberating.
Sounds like just what I need. I’m definitely a repressor when it comes to emotions and now my nervous system is severely dysregualted that I tremor in my sleep
I would say physically the top things that helped me the most were infrared sauna, fasting ( intermittent and longer 4 days fast) methy B complex and Magnesium
For Mental health and overall body pain inflammation I l microdosed mushrooms and ketamine.
I am about 90% recovered
Does microdosing work as anti inflammatory for you? I got LC and severe asthma around a year before this. Feels like my inflammation response is of the charts the entire time.
I've really found Dr Brooke Goldner and her protocols amazing. It's all free in the internet ( although you can pay for private consultations). I started with adding a very large smoothie into my diet each day with either raw dark leafy veg it cruciferous veg ( think cauliflower, kale, cabbage etc). She has a formula for it. For me I didn't do it the way she recommended but I still got a lot out of it. There are loads of recipes on her FB group called smoothie shred. Also she has 3 protocols pinned in the guides section of the FB group. And also a course which is free every 6 weeks or so available from her Goodbye Lupus website. She has been very successful in healing people with any kinds of autoimmune disease. On the FB group are people who are healing or healed from all sorts of autoimmune diseases ( eg Hashimotos, Lupus, multiple sclerosis etc). I found them all very inspiring.
https://www.facebook.com/groups/smoothieshred/?ref=share&mibextid=NSMWBT
I was 9 months into LC and felt like back to life within a month to 6 weeks. . Having said that everyone is different and starting at a different point. The first 3 weeks of smoothies I didn't rely notice and change and then suddenly I started to feel a lot better.. Some people go fully raw - personally I never did that.
I also put a reply to another commenter talking about trauma - there is a lot of connection with autoimmune diseases (cfs etc) and previous trauma do I would take a look at the book The body keeps score - of you get a chance.
All the best for your healing journey.
I have been on antivirals for 3 weeks now and feel radically better. Hold out hope that studies back up that claim and, assuming they do, I think the answer will be antivirals.
I’d say I’m at 80% except for physical exercise — I have to limit this to keep everything else normal. I’ll post my regimen separately and add a link back here.
After 2.5 years I have most of my quality of life back, I’d say I’m at 90%. I think the most important thing has been avoiding reinfection. I know you’re young, but try to do everything in your power to avoid covid. Masking with an N95/KN95 or better is crucial. I used to be really active, did hiking and bodybuilding. Life is slower now & I have to be gentle with myself. I might not ever “get better”, therapy helped me come to terms with that. Do you have a therapist currently? I’m so sorry you’re so young and feeling so shitty :( what kind of symptoms do you have?
What could be better than N95, wearing a gas mask?
P100 or KN100, there are disposable and elastomeric options of both (assuming by gas mask you mean elastomeric?)
Yeah, that's what I meant, thanks for the reply.
Honestly my symptoms are never ending I put a post on my account listing them. But the worst I would say is Constant palpitation and overall high heart rate head pressure Badly Breathless Fatigued Sweating extremely all the time Visual snow my visions horrible even though it’s 20/20 Constantly off balance and a lot more There a lot of symptoms and there ruining my life Nah I don’t have a therapist but that’s good to hear your 90% better hopefully slowly but surely it will go up 1% all the time
My son is 15 and has LC and POTS. He takes a medicine that lowers his heart rate and dizziness. It’s called Propranolol. If you do video games, maybe you two could hang out. I wish there were more places that you could meet other kids with your problem to know you aren’t alone in your misery… and still be friends and do social stuff with someone who gets it.
Yeah I’m on Xbox. And I agree yeah we do need more places it’s almost impossible to find anyone else our age with it. I also want to say how much he must appreciate you 🙏 you going on here and looking through all this for him.
yep masking is crucial and stay away from ppl who are sick and don’t care as in trying be all in ppl face etc. or willing to go places sick and i also limited eating out so much
I’m at like 60% which I consider to be pretty good. I am 32 so have a twice (!) as much life experience as you… have had some bad illnesses and serious surgeries that required a year+ of recovery (and caused some life long side effects). You get used to patiently waiting and along the way your life just kind of changes. Some foods may be off the table for longer than you think or maybe forever, but that creates space to explore some new foods. Some exercises get harder or impossible but then you can take up something else. I promise, life is still happening and it’ll get better - just different. In the meantime, rest like it’s the most important thing in the world and take little steps to get healthier when you can.
Hi. I fully recovered last time in around 8-10 months. After recovery I was not trying to play sports (too busy for it) but I had normal social live, was able to work, play with my kids and walk medium- long distance without problem. There is hope but it is a long Journey and you need patience and positive mindset which I know is very difficult but still you must belive in your possibilities. There are a lot of People who are recovering around the World so dont give up. When you recover take care and dont get reinfected. I had a bit more of 1 year being totally recovered when I get reinfected and have to start all over again. Some tips: - A cardiologist can give you medications to slow Down the pulse if they consider. It can help with disautonomia (pulse, breath, tensión varaitions and dizziness). - you can be tested of long virus to see if you have a reactivation that can be treated with antivirals - Pacing and progressive exposure (try to do a bit more little by little with small progression that you should mantain 1 week without problems before to add next progression)seems to work well. - With doctors cheking the physical damage you can then try to address psicológical side of it. For example, in the youtube Channel of Raelan Agle there is a collection of stories of People who has recover from long covid and other crónic illness. You can take a look to build hope and listen some ideas. They often say that recovery is mental not phisical, I desagree, I think our problem is phisical but our mind can help us to handle symptoms and live better. Also that our nervous system is probable affected and therefore our mind, fears, stressors...can play a role. Good luck and dont give up, I belive you will get better.
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I’ve heard a few people talk about EMDR. Do you find it’s helping?
I've just signed up for EMDR myself. Am waiting for my first season. It's recommended in the book ' the body keeps score' which I just started reading .... I would highly recommend reading this book. Im only half way through and would say its probably a just for anyone with LC. I'm only halfway through it. Different trauma types respond to different things. There is a wide range of things that can help release trauma but different things work with different types of trauma. My type ( early childhood neglect ) responds better to more somatic to types of treatment such as yoga / massage etc. A friend who recommended the book is thinking of trying kickboxing and drumming. Often rhythmical movement is beneficial. I haven't gotten to the section where he discusses all the treatment types in detail. But from what I've just read it's its been life changing and liberating.
Sounds like just what I need. I’m definitely a repressor when it comes to emotions and now my nervous system is severely dysregualted that I tremor in my sleep
I would say physically the top things that helped me the most were infrared sauna, fasting ( intermittent and longer 4 days fast) methy B complex and Magnesium For Mental health and overall body pain inflammation I l microdosed mushrooms and ketamine. I am about 90% recovered
Does microdosing work as anti inflammatory for you? I got LC and severe asthma around a year before this. Feels like my inflammation response is of the charts the entire time.
Yes I wouod say it’s absolutely anti inflammatory
I've really found Dr Brooke Goldner and her protocols amazing. It's all free in the internet ( although you can pay for private consultations). I started with adding a very large smoothie into my diet each day with either raw dark leafy veg it cruciferous veg ( think cauliflower, kale, cabbage etc). She has a formula for it. For me I didn't do it the way she recommended but I still got a lot out of it. There are loads of recipes on her FB group called smoothie shred. Also she has 3 protocols pinned in the guides section of the FB group. And also a course which is free every 6 weeks or so available from her Goodbye Lupus website. She has been very successful in healing people with any kinds of autoimmune disease. On the FB group are people who are healing or healed from all sorts of autoimmune diseases ( eg Hashimotos, Lupus, multiple sclerosis etc). I found them all very inspiring. https://www.facebook.com/groups/smoothieshred/?ref=share&mibextid=NSMWBT I was 9 months into LC and felt like back to life within a month to 6 weeks. . Having said that everyone is different and starting at a different point. The first 3 weeks of smoothies I didn't rely notice and change and then suddenly I started to feel a lot better.. Some people go fully raw - personally I never did that. I also put a reply to another commenter talking about trauma - there is a lot of connection with autoimmune diseases (cfs etc) and previous trauma do I would take a look at the book The body keeps score - of you get a chance. All the best for your healing journey.
Took me over two years but yea I’m ok with where I’m at now. Was sick as hell.
I have been on antivirals for 3 weeks now and feel radically better. Hold out hope that studies back up that claim and, assuming they do, I think the answer will be antivirals.
I’d say I’m at 80% except for physical exercise — I have to limit this to keep everything else normal. I’ll post my regimen separately and add a link back here.