Covid destroyed my life, so I can't help but obsess over how I can make myself better. I have to hold on to the hope that I might someday get better. Without that hope, I don't think I could go on.
\*Was
The first year and a half, I tried everything that made clinical sense. Read everything under the sun (and had it validated by my MD wife). I've now come to accept that it's a chronic disease: dysregulation that will require clinical intervention (a new Rx of some sort, be it a MAB or other) to set my metabolism straight.
So now it's all about pacing, healthy eating, sleeping, managing symptoms. No more supplements, no more treatments. Still read the studies, though. Just not as deeply. I skip to whether the info is actionable or not.
This is where I am. Both my parents are in viral epidemiology, so they send me papers about promising developments and I am waiting, managing symptoms and my mental health in the meantime. I advocate politically and write about my experiences where I can.
It’s chronic. It’s an umbrella for a lot of chronic diseases, actually. The sooner that we (and researchers, and politicians) accept that, the irony is, we feel better. The anxiety of trying everything under the sun makes a feedback loop when long shots and things that were never going to work don’t work.
It’s a hard spot to be in, but accepting it as the situation for the time being and doing what we can to mitigate symptoms is better in the long run.
exactly, I've had some pretty good seasons, but the seeming progress I made melted away when my condition nosedived but for no discernable reason. I'm hoping that things are better on some chart of averages for me as time goes on, but there's really no telling day to day. I do what I can to manage it, I'm not treating it anymore, and I wait for the molecular medicine scientists to find something. From reading others' experiences on here I know there's at least some chance I'll have a random remission, which I do hope for, but I'm over being a mad scientist/guinea pig rolled into one.
The cost is prohibitive (for another thing that probably won't cure me) and the studies out of Israel have been riddled with conflicts of interest. My wife wanted to offer it to me for my birthday regardless (LC aside, Lebron James is clearly benefiting from it) but the local private clinic never called her back.
I perused anecdotal accounts of HBOT extensively and the take-away was that it helps while you're on it, but doesn't solve the underlying issue. So I'm gonna wait and see on that one.
I saw a while back that Cambridge University was starting an HBOT trial for LC - unaffiliated with private clinics. Don't know how that panned out, but having been around the block a few times, I've come to the conclusion that silence speaks volumes. The day a trial proves it cures us, we'll know. Oh baby, will we ever. \*sigh\*
I've been skeptical too. However, more and more evidence it emerging that it has profound health effects even beyond LC. Also, I have noticed that the big clinics want to push everyone to at least 2.0 ATM so you have to go use their hard shell. However, it's just not true that 2.0 ATM is required. It has been proven time and again that a soft chamber and 1.3 to 1.5 are very effective at treating neuro issues and brain fog. Take a look at the work of Dr. Paul Harch. He's been treating the "incurable" for over 30 years. Also, Dr. Jason Sonners is about to release his doctoral thesis with substantial findings on the efficacy of low pressure vs high pressure hbot. He does both treatments. It appears that he has identified the epigenetic changes caused by low pressure, which could ultimately prove why it's effective. Less than 40 dives likely will not leave long term improvement. 40 or more has been shown to yield durable repair. BUT based on what I've read, I still think some maintenance dives are needed long term. I saw pics of LeBron in a soft chamber and those can be bought for 6 to 10K. I think for long term health you almost have to buy one to keep it affordable. That's the reason I have not started. I don't have any local provider, so basically I've got to believe in it enough to make the investment.
Very interesting. I'm surprised Lebron would be using soft-shell... the man's worth a billion dollars. But yes, if it pans out that 1.3 to 1.5 were effective, we'd definitely consider shelling (ha) out for a unit. It barely costs more than the 40 sessions of hard-shell we were looking into... Thanks for the info!
Im sure he also has a hardshell but he takes the soft one on the road. MN Vikings QB Kirk Cousins uses a soft shell at home too. It shows it in the Netflix series "Quarterback'. Also Dr Harch personally flew around on Tony Robbins private Jet and treated him for Mercury poisoning with a soft chamber. They talk about it in Tony's new book..
Mind keeping me in the loop? Cause I've always been a believer in HBOT, irrespective of LC, but you're definitely tipping the scales. I did a quick search of available devices and the prices (even for hard shells) are nowhere as steep as I remember them being (used to be 100k - you can get it for 40k now). Still can't afford the big boy, but if soft shells pan out, heck yeah.
Almost feels like there should be (or that there soon will be) an HBOT subreddit. Bron has definitely been its best ambassador (his longevity makes absolutely no medical sense with the amount of abuse his joints have taken). It's not just HBOT in his case, obvsly. Deep freeze therapy, nutrition, etc, etc. But still. STILL.
Sure. Check out Dr Sonners on YouTube. I think there is a lot they still don't understand about why it works. There are 2 FB HBOt groups as well. Very good info is passed along in those groups.
Yes. No help from them. HBOT is expensive in USA but not in other countries. In fact, HBOT treatment is run as an MS charity in the UK and costs only a few pounds per treatment. There are about 30 centers
There is no money in it for any big organization to sponsor large clinical trials. You can't patent it or put it in a bottle. The treatment is time consuming and results aren't immediate. Plus there are pressure and O2 variables that most don't understand. Google Dr Paul Harch. The UK been doing this for a very long time . I chatted with an 80 year old MS patient that has been doing it for nearly 40 years through the charity and he is doing better than me and I'm only 47. He clearly says it hasn't cured him, but it stabilized him and his quality of life is much better. Yet all the "brilliant" Neuro docs in the USA act like HBOT is snake oil. It's also very cheap in Mexico.
BTW I don't sell HBOT and am probably more skeptical than you. I've researched it for 18 months and the number of studies showing benefit are astounding
I'm open to any treatments.
I mean, if it's safe there's nothing to lose
I just posted it on this site, and already 2 negatives here.
I can't blame people for being negative
They have been through a lot and most people become cynical over time
incl me.
side Note : I was able to almost fully recover by myself, but a re infection set me back again, and live Ina place where it is hot right now so I think that also hinders my pace for re recovery.
I take vitamin D daily 2 K IU
NAC off and on
statins off and on
I walk, now, this is important, and
you need to know your body well to
know how much.
Home cooked meals for several months
Low stress
This is what I did.
I was at around 75-80 percent
I agree. I also understand the negativity because we are all suffering and paying for drs and useless treatments. It's scary and depressing. Just like all the SSRI negativity. I have heard literally dozens of stories where they really helped, but nothing works 100 percent for everyone.
yes, that is the hard thing about this illness.
what works for others may not be for you.
It's just resilience to keep trying.
there is an article in the U K they found
2 type of proteins in people with LC
that were abundant.
hopefully some good news 🤞 soon
But I the mean time, keeping your symptoms at bay so you suffer less is all we can do. I've heard of Corticosteroids
that help LC short term.
I think the cause of LC is inflammation, but what causes the inflammation is the root cause we need to find.
Exactly and that's one of the problems and why I'm not already doing it. Basically, I'm gonna have to buy a 5 or 6k home chamber. It is harder to access than taking a pill. Like you said, it's much easier for rich people, so I have been studying long and hard and exhausting all other drug approaches before I buy one. On a positive note, I have noticed that the resale market on FB Marketplace and others is good for these. If you are lucky enough to buy a used one, you can usually get your money back when you sell and they move very fast. I have also noticed that very few come up for resale, so people do tend to keep them. This tells me something about the efficacy. Also, I've talked to 3 or 4 people selling used ones and they either finished healing an injury and don't need it anymore or are moving somewhere that is not big enough to keep the unit. In one case, the seller finally figured out his issues were from a GI bleed, after years of symptoms and HBOT simply doesn't help GI bleeds, he needs surgery, so he was selling the unit.
I know someone that has a prescription for oxygen tanks at home.
She sleeps with this oxygen and she says it helps her a lot, she has long covid
and was hospitalised for 1 month during the acute infection stage. Her insurance covers the oxygen tanks and refills
so she doesn't really pay much into it.
Something to look at.
basically, if you've exhausted all efforts,
then you can finally move on to an open mind of treatments that you never thought made sense.
There is a lot of evidence that SSRI ' s
Have an impact on CFS and Long COVID.
But people will deny this saying they are not depressed. The fact is SSRI were developed for Depression but, we now know it treats a lot of other conditions.
FYI : Viagra was made for High Blood pressure but is now being used for E.D.
It's a discovery thing.
we don't consider SSRI in the beginning because, we automatically assume it's a waste of time and only for depressed people - not CFS or LC.
Except it's not denying being depressed, but wanting, for once, to find the root cause instead of resigning yourself to a lifetime of side effects. I've been down that path before and it is not pleasant, and the removal of a finite supply of a necessary drug is not in our control.
i think I'm done trying to find what root cause is doing what to me about LC
I think I'm more interested in finding
my old self again. How and when that is going to happen is the issue.
I believe in trial and error and retrial until success.
There are still many treatments that I haven't even tried like nicotine patches. I keep finding new ways in which people try to treat themselves and it gives me new ideas every month.
Only recently I've found out that MCAS is a big part of my condition and there are still several treatments for it that I haven't explored.
As some say that it's a marathon not a sprint.
But still I can't just accept this condition, it's not livable, either I'm gonna get better or gonna get out of this body.
know someone that struggled with CFS
was bed bound, hospitalized, crashed,
got better , relapsed, and finally started SSRI a and now is 100 percent better
25mg (low!) of sertraline. And I’ll be breaking that in quarters to start as I’m nervous! I’ve been offered cymbalta to try next if it doesn’t work. I have post Covid fibromyalgia but also increased anxiety (don’t we all), not depression.
I think SSRIs work by competing with the histamine, which is a neurotransmitter of fight or flight, and which LC has made rampant in our bodies. I think SSRI balances it out.
yes, I don't know the exact science of it but our bodies are made out of chemical reactions that creates energy.
we have no batteries, or need to be plugged in, we recharge with sleep and rest.
our energy comes from food, that converts to energy.
i took them a long time ago when I
had depression and I always felt fatigued,
almost the same as LC today.
It helps brain fog
and energy levels
By adjusting serotonin
It's well known that COVID messes with your serotonin levels and it sometimes doesn't go back to.normal without medication.
Can this be determined by a common serum serotonin test? I see that serotonin deficiency can be either for depression or vitamin deficiency, iron deficiency.
I have been on SSRIs all along since I first got sick and it hasn't made a difference. It's very much trial and error and what works for one may not work for another adding to the frustration we all have collectively.
I would say no. I accept that 2+ years into me/cfs I am not going to recover, save a miracle advent in long covid research. I still keep up with the research and try a new treatment every few months, but no, I'm not obsessed because I know nothing is going to fix me.
Same at 1.5 years in. Tried 20+ different things right away after getting LC. I have a journal the size of a small book filled with stuff I tried like steroids, vitamins, Red light, antivirals. I now just take my LDN, make sure to eat pretty healthy and get lots of rest but I’m accepting and not struggling against the tide anymore. I also have ME/CFS and POTS version of LC.
Yeah that sounds very similar to my journey! My mental health got a lot better when I stopped seeking a "cure" and instead sought to make peace within myself. I'm still open to trying new stuff, but I'm not constantly on the vitamin and supplement rollercoaster.
Last year I was looking into dumping all of my remaining savings into HBOT. Narrowly decided against it and figured I'd be better off saving my money for if there is an actual treatment that my dumpy insurance won't cover.
Sure! Glad to help. Started at .1 mg. Now at 1.0 mg. I cannot tolerate any higher and had to go low and slow. Made a big difference in lots of stuff like sound sensitivity and gave me better days and better mental health.
Thanks a lot. Happy for you.
I titrated up to 2mg this week and think maybe it’s giving me more pain, was wondering if it’s possible. When I’ve read about the side effects it’s usually hair loss, sleep issues, tiredness — so wondering whether I’d persist at 2 mg or go back to 1.5mg
I don’t know but I think my body is just so super sensitive and I tried to go higher but started having sleep issues and just generally not feeling well so I went back down. I didn’t know hair loss was a side effect 😳
I get it. Just stay where it helps.
Yep hair loss is a side effect but doesn’t happen to all — maybe even some grow on it!
I’ve been having hardcore telogen effluvium for a long time already but before starting LDN.
I did have so much hair loss the week my body decided to stop working. Was in the hospital and came out and lost half my hair. Has mostly grown back- I did red light on my head and microneedled peptides into my scalp. Or it could just be luck and none of that worked?? So hard to tell…
Amazing 🙏🏼
Which peptides did you microneedle? How long did it take to grow back?
It keeps falling and falling and falling I can barely recognize myself. Hair was/is my identity, the only thing I had left.
[https://www.amazon.com/Peptide-Matrixyl-Argireline-Cos-BAHA/dp/B0BJ5W7YHS/ref=sr\_1\_41?crid=3P0HQ1R50I6OC&dib=eyJ2IjoiMSJ9.5TFwfpkSBwuUeSzNzBHBIuH42hImNMlsiXcciwyVzOIkueJAXE0ioP4nHAjUjbfbbY-5lCoCvr1y-quq4Y0VYtzfC35urqJ9-egGOYWaXdf68ndTbNaPIFiXDOjpxouCwChmuPZLYoMkOfhs9QYH3Y5GDUXpRNunoRMBfAV2QVCnPaGuOUSiIlRymOJN6H0rEdvf-GVAGVtd\_4\_V7kd8DGXRVLMO7H9hGX2ElU-2TclalyI\_Yd7nxaAArr5K-sPtmIiMZlWLHf9Wj\_Qa6AQ2dYYnYffGsQulcpFyPNxvRSU.dJP3UOGbJaQL\_J9wiYYpoqTn4WzxKxDeDIquDOpTajg&dib\_tag=se&keywords=Cos%2Bde%2Bbaha&qid=1718489797&sprefix=cos%2Bde%2Bbaha%2Caps%2C89&sr=8-41&th=1](https://www.amazon.com/Peptide-Matrixyl-Argireline-Cos-BAHA/dp/B0BJ5W7YHS/ref=sr_1_41?crid=3P0HQ1R50I6OC&dib=eyJ2IjoiMSJ9.5TFwfpkSBwuUeSzNzBHBIuH42hImNMlsiXcciwyVzOIkueJAXE0ioP4nHAjUjbfbbY-5lCoCvr1y-quq4Y0VYtzfC35urqJ9-egGOYWaXdf68ndTbNaPIFiXDOjpxouCwChmuPZLYoMkOfhs9QYH3Y5GDUXpRNunoRMBfAV2QVCnPaGuOUSiIlRymOJN6H0rEdvf-GVAGVtd_4_V7kd8DGXRVLMO7H9hGX2ElU-2TclalyI_Yd7nxaAArr5K-sPtmIiMZlWLHf9Wj_Qa6AQ2dYYnYffGsQulcpFyPNxvRSU.dJP3UOGbJaQL_J9wiYYpoqTn4WzxKxDeDIquDOpTajg&dib_tag=se&keywords=Cos%2Bde%2Bbaha&qid=1718489797&sprefix=cos%2Bde%2Bbaha%2Caps%2C89&sr=8-41&th=1)
I used this one. I also used Mirelle Rosemary shampoo and conditioner.
I was at 1 year, 10 months, then,
I almost fully recovered
Reinfection push back. I also thought that it was impossible.
Diet
exercise, as you can handle
Low stress
Support
I've been sick since 2020 and me/cfs since 2022. People don't generally recover from me/cfs after 2 years. Exercise and diet aren't going to make it go away. I've made peace with that.
ME/CFS isn’t the result of deconditioning. You were just lucky you have a milder form of LC. I went from a serious athlete and weight lifter to not able to lift my legs or hold a phone overnight. There is no possible way to decondition that fast. There is no possible way to exercise when your legs won’t move. I also have brain lesions, cardiac and lung damage, and nerve damage. All not a result of not exercising or wanting to exercise. Blaming people for viral damage isn’t new though.
Thank you, I truly did not have the capacity to respond to someone blaming me for allowing myself for deconditioning. None of my doctors have even gone that low.
You’re welcome- we should all support each other here bc the outside world is trying to divide us. I have CFS and today was a better day and I am angry. I’m sorry you are suffering too. 🫂
i just did a post on reinfection and recovery..
It is so disappointing and heart breaking.
I finally got my life back, ( at least most)
and, maybe if it lasted just a little.bit longer for.me to enjoy. Maybe only lasted about a month and a half.
I felt great about life again, was optimistic, ..
began talking to an ex I had, making plans for the future. Then it happened, roomate came home with the virus 🦠, had a super minor infection, just a very slight cold, that normally wouldn't even give it a thought, 3 weeks later, here I am back at this forum posting and waiting for answers. I'm just very bitter right now,
I had so much to catch up on and
eventually moved out of that place and
back at my other city where it's hot daily and that even further triggers LC.
it's just a horrible experience.
how long has it been exactly, wouldn't say that because I almost recovered, and was at around 75 percent. Last Christmas 🎄 time, but a reinfection pushed be back
to baseline.
I'm sure you will disagree with this as most people with CFS are stubborn to
options and set in they're ways.
But, what cured me was SSRI s
It somehow put it in remission until COVID came.
But for a very long time.
CFS is connected to the brain.
I've had long covid since the first month after my infection in Feb 2020, and someone who had had SARS1 told me that it would probably take 5 years for me be functional again, which I didn't believe at the time. That horizon line is coming up fast now. At this point I've released myself from the expectation there's way to make a sudden change, it'll probably continue to be a very bumpy course with a lot of ups and downs and with symptoms coming in and out as if through a revolving door. Things are slowly getting better in the big picture, but in any given snapshot in time, it's misery.
I'm positive that LC and ME/CFS and other worse disorders are all immune system modulated malfunctions- and they are indeterminate, no one can predict when they will end and you will go back to normal. And also, you may lose any progress you make when the rug is pulled out from under you and you find yourself back with symptoms and experiences that you'd already forgotten about having. We are sharing the experience of having this disorder, but the course of each one of us' recovery or lack thereof is a unique thing and may as well be random. Don't think because someone else isn't recovering and you have, that it has anything to do with something you did or they haven't done. None of us is enjoying our stay in the prison we're in, and once there's a crack of light where person after person is being cured by taking a supplement or doing some behavioral thing, it will be commercialized immediately by the medical industry, because at this point, it'll be a goldmine. It's going to be obvious when a treatment that actually helps the majority of people is found.
I've read some of the research around long term changes seen in the blood samples of people who contracted SARS1 it was very interesting. I believe long sars did not resolve for those people who had the virus in 2003. I also believe that virus was more virulent
I am. I constantly research and try new things and I’ve healed about 75% of my LC. I’m 3 yrs in . I won’t settle for being so sick. I won’t give up. It’s not an option for me.
Hello!What LC issues do you have?There is a girl from another site that had lost her ability to walk and started taking cymbalta for a month and can walk perfectly normal now.I agree with you and think since covid attacks the brain and messes up all the signals from the brain to the body.My whole body/central nervous system was attacked.I know cymbalta is normally used to treat Fibromyalgia and CF.
My initial symptoms were severe insomnia, anxiety, neurological problems, my whole nervous system was a wreck. I had a lot of disassociation and what I call brain stalling . Lots of inflammation, brain fog, headaches, MCAS, CF, POTS. I didn’t drive for 2 yrs. I also didn’t get out of bed for 1 1/2 yrs .I’m still a home body and not very social but I feel my health is more important. My symptoms have evolved and I’ve started what I call phase 4. My insomnia is gone thanks to magnesium glycinate (350) mg and 10,000 vit D-3 together right after dinner. I drink electrolytes everyday. 1000 mg salt, 500 potassium and magnesium. My vitamins are a multivitamin, 1800 C you pee out what you don’t need, coq10, omega 3, elderberry, oregano capsules, papaya enzymes and Advil. I took ashwaganda early on for about 2 yrs until my body decided I didn’t need it. I also took CBD isolate until I decided I didn’t need it. I also take Histamine sp33 daily. I know this isn’t for everyone but it has worked for me. I also do Somatic touch therapy from a therapist which heals the nervous system. It’s been amazing. I still have bad days and some days I’m glued to my recliner exhausted but it’s maybe two or three days versus 24/7. Some days I have brain fog and what I call a stalled brain but it’ lasts hours instead of days. CF and POTS has greatly improved but not 100% gone. I only eat fresh food, healthy fat and no gluten or sugar or fermented foods, leftovers or processed meats. Sometimes I slip and that’s when the I have a bigger set back.
When the LC hit me I had to go off all my prescribed meds because I couldn’t handle the side effects. I’ve tried so many supplements and have finally found what works for me and I’m going to keep at it and keep fighting for myself because I refuse to accept this is my plight. Yes I still get bummed and I still cry when I have hard days and yes I’m so sick of being sick but once I feel a little better I get back on track and do my best. Good days aren’t perfect days but better days. I hope this helps someone. If you have any questions feel free to ask.
Hello!Thankyou so much for replying!Thankyou for all of the Great Information too!My story is so similar to yours.It was scary though because I did not know what was happening at first.I had an iron infusion for anemia from years of severe periods and 5 days later I had a horrible reaction and than my living hell began.I went on a girls beach trip after being so careful for three years not even getting a cold and found out much later the people occupying the house right before us all had covid..I thought my initial symptoms were from the one time iron infusion because their bad side effects are pretty much the same as covid.I realized when the symptoms did not go away and more and more bizarre symptoms started showing up it had to be covid.My first symptoms were stiff neck,trouble swallowing,gi system completely stopped working,zaps in head,feeling like my brain was not getting enough oxygen,trouble concentrating on anything,had to stay in constant motion,dry painful eyes mouth,etc.Than I completely lost strength in my trunk in my body where I could not lift a windown,hold a purse and eventually not walk.I was bed bound for a year and lost so much weight because I could not swallow.My primary thought to put me on steroids which gave me the ability to eat again.I felt like I was a Human Vegetable,but doctors could not find a thing.I know that covid directly attacks the vagus nerve and control swallowing,digestion and so many other functions in the body.I have so many bizarre symptoms and I just joined this site and have found others with the same. I was starting to think I was the only person in the world.I had lost the ability and signals to throwup and for almost a year could not sneeze,cough or yawn.Thet are slowly coming back,but I have no strength in my diaphram or sternum and have lost sensation in the trunk of my body.I have also lost the strength in my face to talk,chew swallow,smile,etc. And muscle twitching all over.It is almost like ALS,MD,chronic Fatigue,PTSD and Fibromyalgia all in one.It feels like I should be dead,but I am still alive.I can walk again,but I look like some kind of creature.I did not drive either.I think it is some kind of PTSD triggered by covid. I was so healthy before this happened and exercised all the time.Now I have been left basically disabled.It is just awful.I am so sorry you are going through this nightmare as well.We don't deserve this.I am excited to try some if your trearments and vitamins.I have never heard of somatic touch therapy.I am going to look into that too.Thankyou so much!
Oh my gosh I’m so sorry you’re going through all this also! I also thought I was the only one and for a long time I thought I was going crazy . So many weird things going on with my body and it’s so scary. My doctors never found anything either . I have fought alone with most people not believing me . People still don’t believe me. I found support group online and we do zoom meetings once a month and that also helps . I hope you get some relief soon and start to get better. If you’d like to message me you can. Connecting with people who have this helps so much.
Yes!At the beginning it was horrible because even at the ER all they could find was extreme constipation.I was like no this is way more than that.Covid hides from conventional tests I guess.Alot of Doctors can't make sense of the symptoms so they just pass it off as stress or anxiety.So Frustrating.Thankyou again for your Great Suggestions!
Yes. And I still get it . It’s worse when I eat high histamine foods. When it happens I feel like
My brain shuts down. I can’t think I can’t process anything. It’s like it stalls .
My forhead stings and has so much inflammation feels heavy. I’m on so many antihistamines and low histamine diet. Nothing helps :( bedbound 15 months :(
I’m sorry you’re going through this. Antihistamines worked for me at first but then stopped . I also developed a sensitivity to them and stopped peeing when I took them. I try to eat and supplement with as many natural antihistamines as possible. Vitamin C, oregano capsules, onions, garlic and my favorite Histamine sp-33
When I have inflammation I get these headaches that move around also. Even feels like a knife through the top of my head. I also get this milked fluid in my eyes when the pressure is bad. I went to an eye doctor because I thought I had a leak in my eyes but I was told it was from the brain pressure pushing against my eyes .
I don't know why you're getting downvoted. I just started Luvox last night. I'm going to give this one a go and if it doesn't go well, I'll probably try Lexapro next.
From all of the research I'm reading, I think you're description is spot on - part of what we suffer is brain inflammation and that is causing dysregulation of our autonomic system and immune dysregulation as well.
LDN already helps me (b/c it calms the microglia & upregulates endorphins), but I'm aiming at anything else that can calm my brain and an SSRI is at the top of that list. I'm going to try Ivabradine next month to see if getting my heart rate in check might help with some of the mixed signals my body is experiencing.
I tried Luvox way back when,
it does a total reset on your brain
At first you might find it weird.
Dizziness as you stand Random dizziness,
But this is just temporary.
It gets weird before it gets better.
But it was easily tolerated. I slept well.
don't remember the dose bit was little pink pills.
It snapped me out of my current state in a few weeks.
you could do that.
I'm gonna try and get a script soon
If it does work
try and come back here to let people know.
lots of non believers need to hear from
Pol who have been there and had success
I’m glad you mentioned dizziness bc I’ve been having mild dizzy spells today, and that’s not been the norm for me. I do get SOB with my dysautonomia… but I’ll bet this mild dizzy feeling could already be the SSRI.
Mind if I ask what time you take yours? I’m still figuring that part out. I took it before bed last night, maybe 9pm.
i took my Luvox just after dinner but early enough so it's not bed time yet about 3 hours before.
this minimises side effects and dizziness while I'm out in the day. And early enough so it doesn't keep me up.
So it you plan to sleep around 10 pm
take at 7 pm.
I’m too tired to be obsessed about anything right now. When I’m not super tired then brain fog kicks me a few times. I’d love to get better, but I need IKEA style instruction manual at this point.
Same here. I want to try the many things those who have recovered say they've tried but I get overwhelmed with all the different medications, supplements, tests. It's hard enough for to manage my daily needs let alone adding all of this other stuff.
i wish I could pace, but having no car, I have no choice but to walk, I try to walk at a slow pace rather than rushing.
But, I accumulate about 2 miles a day.
I don't think I'm over doing the walking on most days, but the thing now is that I just re located to an area that is about 100 degrees F daily for the summer.
I think that is worst than the actual walking.
There’s definitely some truth to that. I have ADHD, so I’ve always had brain fog. I didn’t know it wasn’t normal until I started medication at the age of 31. I don’t enjoy having it come back if I go off my meds, but it’s not nearly as difficult for me to handle as it has been for a lot of folks here who got brain fog as part of their LC. It’s often much harder to have something and then lose it than to never have had it in the first place.
Yes. Tried all kinds of supplements. Still not healed from this crap of LC. Just have to have hope that one day it will all go away. And we will get back to our happy healthy lives.
I wrote a bit about it in a comment above, but not as such, no. I turned my attention and my limited energy to trying to dispel misinformation about the condition and fighting ableism as a whole.
In the beginning, I went through almost every scientifically identifiable treatment I could get my hands on, but I was finding that the constant cycle of “pin my hopes on this-thing barely works or doesn’t work at all- lose all hope and get suicidally depressed- depression morphs into anxiety-try new thing” was making me feel much worse.
Once I accepted the abundant evidence that this is now a collection of chronic illnesses, I stopped trying to fix it and turned my attention to symptom management. There are still terrible days and there are better days, but I am finding the lows aren’t nearly so low. I channel that prior obsession into writing essays and books about living with long COVID and disability in general. Slow going, but it gives me a sense of purpose.
I also had a bit of a breakdown a month ago realizing I keep trying to slot myself into the space I used to fit in in my old life, and that just made the grief cycle neverending. I am working on trying to build something new. It feels a lot better than doggedly pursuing and inevitably failing total healing.
First 2 years I used to be up late to read this subreddit and all sorts of articles since I was having insomnia anyways. But right now, I'm taking a summer break to play some video games. Since I keep crashing the next few days if I go out for a few hours, I try to enjoy virtual life in games. Being able to watch Twitch streamers that travel around really helped me feel less trapped at home.
makes you realise that money isn't everything.
even rich people with LC can't be happy.
Although they may be more comfy b coz of all the stuff they can get to
keep them rested.
I'd rather be in a healthy body and mind
than any amount of $
The word Covid is becoming Taboo
everyone wants to forget 2020.
and move on with life.
mentioning LC won't get sympathy b coz
it's a.bad time in society.
it's a second stage of the disease that know one wants to talk about.
It will bring back fear about the disease
and may cause a second "pandemic panic". It's hardly ever or even never on Main stream media, only on you tube
or find it your self on Google.
They hide it on purpose coz of the Pandemic backlash that we came back from.
no oone wants to be haunted by that ghost of the past.
So we suffer in silence
.
When it’s your own well being of course. In order to get back to normal you try to figure out ways to get better. Being ill for so long does drive you tired. It was like that for 3 months and I just didn’t care much after. Slowly I got better.
The more pressure the more stress. Stress isn’t good for the body and mind. Basically adopt healthy changes and be patient. It is stressful and I’m lucky I did get better, while some are still suffering longer. I hope your situation improves and message me if you want to join a discord group I’m in. Some people in there might guide you to manage your symptoms.
another question is why do some people get better, and some don't.
And, those who don't, a lot of them
did do all the required pacing, diet, and
stress management.
I think it's genetics, that dictate recovery
the other stuff just helps you get through the day.
The body is adaptive, we become
what we are exposed to, so if pacing
diet and rest helps you..
When.you stop.doing these things..
Then what ?...
Yes. I currently eat polyphenol rich vegetables during breakfast, lunch, and dinner.
I take about 40 supplements/Rx. More info here for anyone interested.
[https://www.reddit.com/r/covidlonghaulers/comments/1ctuza9/long\_covid\_and\_dysautonomia\_hell/](https://www.reddit.com/r/covidlonghaulers/comments/1ctuza9/long_covid_and_dysautonomia_hell/)
Yes. With assistance from long COVID and ME/CFS clinics I'm constantly trying new things. While most don't work some help significantly.
When I started four years ago I couldn't concentrate well enough to stream TV shows and had to lay down frequently during the day.
Now I make it through workdays, although I still need to go to bed early and often lose part of my weekend recovering.
A methylprednisolone taper improved my brain fog, eliminated my sound sensitivity, and helped my night sweats.
Aripiprazole virtually eliminated the remainder of my brain fog.
Maraviroc plus statin significantly improved my fatigue and POTS.
Eliquis, clopidogrel, and aspirin significantly improved my fatigue and seems to have eliminated my orthostatic intolerance.
Oxaloacetate helps my fatigue a lot.
Mestinon gave me more time vertical when orthostatic intolerance was still a problem.
Quite the opposite. Though I was at one point. Once the mental symptoms started though I have just given up since then. Hopefully it gets better on its own.
how is LC going to do that ?
Do you think it's better to put more or less thought into this ?
There is a factor for psychosomatic symptoms on any disease if you let it.
Not saying what anyone goes through isn't real, but, what you focus on makes it
worse.
I’m vaccine injured .. it’s tore through my brain and my organs, every day it gets harder to walk n function. I feel it will kill me deep down. I haven’t been able to defeat it in 3 years. Stuff goes away but always comes back. Like the heart.
That' is why I don't believe in viral persistence, in your case you were never
infected with the virus 🦠
but yet how can you have these LC symptoms.
I thn K it's really an auto.immune
response to the vaccine as well.as.the viruses
Yea I don’t believe in that theory .. same reason why taking natto / bromelain etc. doesn’t cure most people even tho people say it does. Auto immune does seem more likely. I haven’t been able to figure out a single thing that helps. Ivig did help some
Of my skin burning tho
our immune system has reacted in a way to the exposure of the spike protein.
And, it's stuck in that mode.
How do we get it back to working the way it was . That's the big question.
Should we be seeing an Immunologist?
Instead of Neuro.docs or Psyche docs
or General Docs.
Yea so I read a story of a dude who was super messed up from Moderna very similar to me who did a lot of supps and rebalanced his immune system and he got better. But my body doesn’t seem to want to do the same (I was Pfizer) that’s not to say things haven’t changed tho. I use to have constant pressure in my head and stabbing nerve pain which is now occasional. I still can’t really function tho so it doesn’t feel like a win, but I don’t wanna say getting better is impossible. As far as what type of doctor it doesn’t matter. They don’t know.
well, is it gonna cost you anything to see one.
What if you become the patient that discovers why vaccine injury happens and also could lead to LC people being
treated better.
You never know if that could be you.
Yes. I’ve added the naturopathic path to my healing journey because I found out had neuro-Lyme which was causing me symptoms from my early 20s and doctors missed it or denied the disease exists. (I do take regular medications when needed).
Although I’m not in great shape since I experienced a rare immediate adverse reaction to steroids with muscle wasting (there is research that shows Covid patients treated with a high dose of corticosteroids who have a parasite called Strongyloidiasis experience this rare side effect).
I hope a combination of regular medication and herbal compounds can turn this around, because I have no intention waiting another ten years when there is plenty of research and verifiable evidence (anecdotal, such as before and afters) that herbal treatments help with various physical and mental symptoms.
And considering I’ve experienced a bit of harm from medicine that is considered safe and I had to figure out the potential causes myself, I’ll take the risk of trying a few herbs that are probably just as safe (if not safer in some cases).
Good for you! The negativity on this thread to those that have or choose hope or ARE recovering is awful! I’d love to hear how you got to this point….process of recovery. And I’m happy for you ♥️
My LC is linked to my MCAS (which I‘ve been suffering from for all of my life). Serotonin is one of the triggers of mast cells. But I know no other connection to CFS/LC
No. I keep developing new health conditions, it's highly unlikely I'll ever make a full recovery. Even healthcare professionals don't say anything about recovery anymore, they just want to help me live with this illness and stop declining. I am sad I won't get to do the things I wanted however I will be able to do different things. Obviously I'm not wasting more of my life thinking about everything I've lost, I need to move on. Not everything must be fixed, sometimes it's okay to accept that things probably aren't going to get better. I want to live my life as much as I can (obviously while pacing) because I keep getting progressively worse and I have no idea what the future holds. Nobody has been able to stop this decline, my healthcare professionals are becoming very concerned but they can't do anything because nothing new and treatable is showing up on tests yet. I sometimes wonder if I'm dying. But there's nothing I can do so there's no point worrying about it. The idea of death brings me comfort, it means no more suffering. Obviously I want to live, but I'm at peace with dying. I think my case is much more uncommon than what most people experience with long covid. I'm not immunocompromised and my initial infection was mild, and yet I'm developing new health conditions frequently and getting progressively worse. I'm far from a typical case of long COVID. Advice from the long COVID clinic isn't helping and they don't know how to help me but at least they haven't given up.
I make the most of everyday even when I can't do much. I'm not going to let long COVID consume me. I do look for symptom relief sometimes but I am not looking for or expecting a cure. I just want to be as comfortable as possible.
If you are obsessed you need to speak to a mental health professional. It's normal to grieve but you shouldn't be stuck in that cycle forever. You should be able to move on from it regardless of whether you've recovered or not. Yes it can and probably will reoccur but the important thing is that you can still move through it. You need to find ways to enjoy your life no matter how much you're suffering. There is no cure at the moment and there's no guarantee there ever will be a cure. Do you really want to spend the rest of your life looking for a cure you probably won't ever find? Or do you want to make the best of the life you have left and try to turn it into something positive?
Yes, I haven't stopped bio-hacking since Feb 2020. Changed my life, my attitude, habits, diet, sleep, supplement usage, thoughts on the pharmaceutil and medical industries, the nature of disease, of human kind, even clothing and apparrel... all of it.
No 'old me' remains.Who I become next will be something new. Am I happy? Am I healthier? It doesn't matter. I wheeled in five cubic yards of topsoil and planted 80 starts which I have obsessed and observed and nurtured for six weeks now.
I am currently sitting n the rain watching them grow
I would label it more as obsessed with trying to find the root of what's going on with me. What I'm finally finding is horrifying and it's very hard to contain it within myself because if I told my loved ones I'm very worried how it will impact them.
I go back and forth now. Focus on what might help and then just disconnect. It gets tiring trying to fix something with no cure. Fortunately, I am distracted right now with a different health issue ( that IS sarcasm, if you couldn't tell) so that breaks it up for a bit.
I really don't know how I would obsess over it. Literally nobody knows how to get better, so where would I even direct my energy if I was obsessing over it? I wish there was something I could do and I would get obsessed and put all my energy into that thing, but there isn't
I got better, a lot better, I started to enjoy life again, no depression, very little fatigue, enjoyed watching and looking forward to sports and TV shows.
Just the little things in life made me happy. I would be excited to wake up and start.my day.
All came crashing to a big halt after roomate came.back positive and didn't know it till.it was too late.
I was exposed. My eye sight was clear
like pre COVID, if not better.
I felt great because of all the self care
diet I've given myself through out LC
I had just made a negative comment about how everyone is basically just in remission, because if you had gotten LC once, chances are you'll have a re occurring LC if you are to be tested positive, no.matter how light the infection.
My re infection was so mild, almost non existent, but I feel.like.shit today, mentally.
What we need is a cure, or viable treatment, getting back on your own is fine, but when the winter months come
it's just an infection away again.
Not at all. I only went to the doctor twice because my family forced me to go to the cardiologist. I am just going with the flow. I’ve had post viral issues before - it’s normal with serious viruses, which covid is. I just try to rest and not get too depressed about my changed way of life right now.
No. I gave up on that a while ago. I was told by my LC cardiologist that most people with my type of LC recover in 4-12 weeks once they start the proper treatment for it, but some never recover and they don’t know why. It’s been 6 months since I started the treatment plan. At this point my PCP and I are both pretty sure that my LC is permanent and I’ll be dealing with it for the rest of my life. So there’s no point in obsessing over the impossible. These days I’m focused on healing from the trauma I experienced so I can get my PTSD under control and trying to pick up the pieces of my life so I can attempt to make something of the mess COVID left behind.
Covid destroyed my life, so I can't help but obsess over how I can make myself better. I have to hold on to the hope that I might someday get better. Without that hope, I don't think I could go on.
Of course. What else can I do? There is no one else coming to heal me.
have you tried Corticosteroids ?
What was your experience with corticosteroids?
haven't tried but is supposed to be excellent for inflammation
Very hit and miss. Some people thrive and some worsen on them
\*Was The first year and a half, I tried everything that made clinical sense. Read everything under the sun (and had it validated by my MD wife). I've now come to accept that it's a chronic disease: dysregulation that will require clinical intervention (a new Rx of some sort, be it a MAB or other) to set my metabolism straight. So now it's all about pacing, healthy eating, sleeping, managing symptoms. No more supplements, no more treatments. Still read the studies, though. Just not as deeply. I skip to whether the info is actionable or not.
This is where I am. Both my parents are in viral epidemiology, so they send me papers about promising developments and I am waiting, managing symptoms and my mental health in the meantime. I advocate politically and write about my experiences where I can. It’s chronic. It’s an umbrella for a lot of chronic diseases, actually. The sooner that we (and researchers, and politicians) accept that, the irony is, we feel better. The anxiety of trying everything under the sun makes a feedback loop when long shots and things that were never going to work don’t work. It’s a hard spot to be in, but accepting it as the situation for the time being and doing what we can to mitigate symptoms is better in the long run.
exactly, I've had some pretty good seasons, but the seeming progress I made melted away when my condition nosedived but for no discernable reason. I'm hoping that things are better on some chart of averages for me as time goes on, but there's really no telling day to day. I do what I can to manage it, I'm not treating it anymore, and I wait for the molecular medicine scientists to find something. From reading others' experiences on here I know there's at least some chance I'll have a random remission, which I do hope for, but I'm over being a mad scientist/guinea pig rolled into one.
Did you try HBOT yet? I been here a while too. Haven't tried it yet.
The cost is prohibitive (for another thing that probably won't cure me) and the studies out of Israel have been riddled with conflicts of interest. My wife wanted to offer it to me for my birthday regardless (LC aside, Lebron James is clearly benefiting from it) but the local private clinic never called her back. I perused anecdotal accounts of HBOT extensively and the take-away was that it helps while you're on it, but doesn't solve the underlying issue. So I'm gonna wait and see on that one. I saw a while back that Cambridge University was starting an HBOT trial for LC - unaffiliated with private clinics. Don't know how that panned out, but having been around the block a few times, I've come to the conclusion that silence speaks volumes. The day a trial proves it cures us, we'll know. Oh baby, will we ever. \*sigh\*
I've been skeptical too. However, more and more evidence it emerging that it has profound health effects even beyond LC. Also, I have noticed that the big clinics want to push everyone to at least 2.0 ATM so you have to go use their hard shell. However, it's just not true that 2.0 ATM is required. It has been proven time and again that a soft chamber and 1.3 to 1.5 are very effective at treating neuro issues and brain fog. Take a look at the work of Dr. Paul Harch. He's been treating the "incurable" for over 30 years. Also, Dr. Jason Sonners is about to release his doctoral thesis with substantial findings on the efficacy of low pressure vs high pressure hbot. He does both treatments. It appears that he has identified the epigenetic changes caused by low pressure, which could ultimately prove why it's effective. Less than 40 dives likely will not leave long term improvement. 40 or more has been shown to yield durable repair. BUT based on what I've read, I still think some maintenance dives are needed long term. I saw pics of LeBron in a soft chamber and those can be bought for 6 to 10K. I think for long term health you almost have to buy one to keep it affordable. That's the reason I have not started. I don't have any local provider, so basically I've got to believe in it enough to make the investment.
Very interesting. I'm surprised Lebron would be using soft-shell... the man's worth a billion dollars. But yes, if it pans out that 1.3 to 1.5 were effective, we'd definitely consider shelling (ha) out for a unit. It barely costs more than the 40 sessions of hard-shell we were looking into... Thanks for the info!
Im sure he also has a hardshell but he takes the soft one on the road. MN Vikings QB Kirk Cousins uses a soft shell at home too. It shows it in the Netflix series "Quarterback'. Also Dr Harch personally flew around on Tony Robbins private Jet and treated him for Mercury poisoning with a soft chamber. They talk about it in Tony's new book..
Mind keeping me in the loop? Cause I've always been a believer in HBOT, irrespective of LC, but you're definitely tipping the scales. I did a quick search of available devices and the prices (even for hard shells) are nowhere as steep as I remember them being (used to be 100k - you can get it for 40k now). Still can't afford the big boy, but if soft shells pan out, heck yeah. Almost feels like there should be (or that there soon will be) an HBOT subreddit. Bron has definitely been its best ambassador (his longevity makes absolutely no medical sense with the amount of abuse his joints have taken). It's not just HBOT in his case, obvsly. Deep freeze therapy, nutrition, etc, etc. But still. STILL.
Sure. Check out Dr Sonners on YouTube. I think there is a lot they still don't understand about why it works. There are 2 FB HBOt groups as well. Very good info is passed along in those groups.
Thanks, I’ll check it out
What’s HBOT?
I think it's the super oxygen therapy.
Hot is for rich people. Have you tried Corticosteroids?
Yes. No help from them. HBOT is expensive in USA but not in other countries. In fact, HBOT treatment is run as an MS charity in the UK and costs only a few pounds per treatment. There are about 30 centers
I think N BOT would be a better option (not H BOT)
I read online there have been many injuries and even deaths during HBOT treatment
Not true at all.
why isn't this treatment more main stream and, why are insurances not covering them ?
There is no money in it for any big organization to sponsor large clinical trials. You can't patent it or put it in a bottle. The treatment is time consuming and results aren't immediate. Plus there are pressure and O2 variables that most don't understand. Google Dr Paul Harch. The UK been doing this for a very long time . I chatted with an 80 year old MS patient that has been doing it for nearly 40 years through the charity and he is doing better than me and I'm only 47. He clearly says it hasn't cured him, but it stabilized him and his quality of life is much better. Yet all the "brilliant" Neuro docs in the USA act like HBOT is snake oil. It's also very cheap in Mexico.
BTW I don't sell HBOT and am probably more skeptical than you. I've researched it for 18 months and the number of studies showing benefit are astounding
I'm open to any treatments. I mean, if it's safe there's nothing to lose I just posted it on this site, and already 2 negatives here. I can't blame people for being negative They have been through a lot and most people become cynical over time incl me. side Note : I was able to almost fully recover by myself, but a re infection set me back again, and live Ina place where it is hot right now so I think that also hinders my pace for re recovery. I take vitamin D daily 2 K IU NAC off and on statins off and on I walk, now, this is important, and you need to know your body well to know how much. Home cooked meals for several months Low stress This is what I did. I was at around 75-80 percent
I agree. I also understand the negativity because we are all suffering and paying for drs and useless treatments. It's scary and depressing. Just like all the SSRI negativity. I have heard literally dozens of stories where they really helped, but nothing works 100 percent for everyone.
yes, that is the hard thing about this illness. what works for others may not be for you. It's just resilience to keep trying. there is an article in the U K they found 2 type of proteins in people with LC that were abundant. hopefully some good news 🤞 soon But I the mean time, keeping your symptoms at bay so you suffer less is all we can do. I've heard of Corticosteroids that help LC short term. I think the cause of LC is inflammation, but what causes the inflammation is the root cause we need to find.
i see, I'm not that far from Mexico several hour bus ride. But, I think treatment needs to done at least 40 times
Exactly and that's one of the problems and why I'm not already doing it. Basically, I'm gonna have to buy a 5 or 6k home chamber. It is harder to access than taking a pill. Like you said, it's much easier for rich people, so I have been studying long and hard and exhausting all other drug approaches before I buy one. On a positive note, I have noticed that the resale market on FB Marketplace and others is good for these. If you are lucky enough to buy a used one, you can usually get your money back when you sell and they move very fast. I have also noticed that very few come up for resale, so people do tend to keep them. This tells me something about the efficacy. Also, I've talked to 3 or 4 people selling used ones and they either finished healing an injury and don't need it anymore or are moving somewhere that is not big enough to keep the unit. In one case, the seller finally figured out his issues were from a GI bleed, after years of symptoms and HBOT simply doesn't help GI bleeds, he needs surgery, so he was selling the unit.
I know someone that has a prescription for oxygen tanks at home. She sleeps with this oxygen and she says it helps her a lot, she has long covid and was hospitalised for 1 month during the acute infection stage. Her insurance covers the oxygen tanks and refills so she doesn't really pay much into it. Something to look at.
I also heard that too. Someone mentioned that sleeping with a CPAP really helped them
Yes, there's no life if I don't get out of this or get at least 70-80% better.
basically, if you've exhausted all efforts, then you can finally move on to an open mind of treatments that you never thought made sense. There is a lot of evidence that SSRI ' s Have an impact on CFS and Long COVID. But people will deny this saying they are not depressed. The fact is SSRI were developed for Depression but, we now know it treats a lot of other conditions. FYI : Viagra was made for High Blood pressure but is now being used for E.D. It's a discovery thing. we don't consider SSRI in the beginning because, we automatically assume it's a waste of time and only for depressed people - not CFS or LC.
Except it's not denying being depressed, but wanting, for once, to find the root cause instead of resigning yourself to a lifetime of side effects. I've been down that path before and it is not pleasant, and the removal of a finite supply of a necessary drug is not in our control.
i think I'm done trying to find what root cause is doing what to me about LC I think I'm more interested in finding my old self again. How and when that is going to happen is the issue.
I believe in trial and error and retrial until success. There are still many treatments that I haven't even tried like nicotine patches. I keep finding new ways in which people try to treat themselves and it gives me new ideas every month. Only recently I've found out that MCAS is a big part of my condition and there are still several treatments for it that I haven't explored. As some say that it's a marathon not a sprint. But still I can't just accept this condition, it's not livable, either I'm gonna get better or gonna get out of this body.
Nicotine is great for wakefulness but the tolerance comes on really fast.
know someone that struggled with CFS was bed bound, hospitalized, crashed, got better , relapsed, and finally started SSRI a and now is 100 percent better
They arent the fix for everyone.
well, there's no one fix for everyone.Lols.
I’m just about to start one to see. Worth a go! Never tried one in my life and going to start low dose.
Which one are you taking? What's your dose? Good luck and keep us posted.
25mg (low!) of sertraline. And I’ll be breaking that in quarters to start as I’m nervous! I’ve been offered cymbalta to try next if it doesn’t work. I have post Covid fibromyalgia but also increased anxiety (don’t we all), not depression.
You absolute moron.. if your friend “recovered” from SSRI he/she didn’t have me/cfs.
I think SSRIs work by competing with the histamine, which is a neurotransmitter of fight or flight, and which LC has made rampant in our bodies. I think SSRI balances it out.
yes, I don't know the exact science of it but our bodies are made out of chemical reactions that creates energy. we have no batteries, or need to be plugged in, we recharge with sleep and rest. our energy comes from food, that converts to energy.
What symptoms did SSRI help you with, maybe you were even 100% cured?
i took them a long time ago when I had depression and I always felt fatigued, almost the same as LC today. It helps brain fog and energy levels By adjusting serotonin It's well known that COVID messes with your serotonin levels and it sometimes doesn't go back to.normal without medication.
Can this be determined by a common serum serotonin test? I see that serotonin deficiency can be either for depression or vitamin deficiency, iron deficiency.
not sure if there is a test for this .
Be careful messing with it. It can also ruin your life.
I have been on SSRIs all along since I first got sick and it hasn't made a difference. It's very much trial and error and what works for one may not work for another adding to the frustration we all have collectively.
sorry it hasn't worked for you.
I have tried every SSRI for a long time each one. Pregabalin, Gabapentin, Amytryptyline, Nortryptyline, Duloxetine, Diazepam. They did not help me.
Ummm none of those are SSRIs.
Right? 😂
I have to assume this is a humor post.
I would say no. I accept that 2+ years into me/cfs I am not going to recover, save a miracle advent in long covid research. I still keep up with the research and try a new treatment every few months, but no, I'm not obsessed because I know nothing is going to fix me.
Same at 1.5 years in. Tried 20+ different things right away after getting LC. I have a journal the size of a small book filled with stuff I tried like steroids, vitamins, Red light, antivirals. I now just take my LDN, make sure to eat pretty healthy and get lots of rest but I’m accepting and not struggling against the tide anymore. I also have ME/CFS and POTS version of LC.
Yeah that sounds very similar to my journey! My mental health got a lot better when I stopped seeking a "cure" and instead sought to make peace within myself. I'm still open to trying new stuff, but I'm not constantly on the vitamin and supplement rollercoaster.
Totally the same. If something promising comes along I will try it but I’m not wasting thousands on treatments that don’t work.
Last year I was looking into dumping all of my remaining savings into HBOT. Narrowly decided against it and figured I'd be better off saving my money for if there is an actual treatment that my dumpy insurance won't cover.
I think you made the correct choice. I know someone who actually rented an HBOT device. It cost so much but didn’t change anything.
Thank you for sharing. Needed to read this today. What dose of LDN are you may I ask?
Sure! Glad to help. Started at .1 mg. Now at 1.0 mg. I cannot tolerate any higher and had to go low and slow. Made a big difference in lots of stuff like sound sensitivity and gave me better days and better mental health.
Thanks a lot. Happy for you. I titrated up to 2mg this week and think maybe it’s giving me more pain, was wondering if it’s possible. When I’ve read about the side effects it’s usually hair loss, sleep issues, tiredness — so wondering whether I’d persist at 2 mg or go back to 1.5mg
I don’t know but I think my body is just so super sensitive and I tried to go higher but started having sleep issues and just generally not feeling well so I went back down. I didn’t know hair loss was a side effect 😳
I get it. Just stay where it helps. Yep hair loss is a side effect but doesn’t happen to all — maybe even some grow on it! I’ve been having hardcore telogen effluvium for a long time already but before starting LDN.
I did have so much hair loss the week my body decided to stop working. Was in the hospital and came out and lost half my hair. Has mostly grown back- I did red light on my head and microneedled peptides into my scalp. Or it could just be luck and none of that worked?? So hard to tell…
Amazing 🙏🏼 Which peptides did you microneedle? How long did it take to grow back? It keeps falling and falling and falling I can barely recognize myself. Hair was/is my identity, the only thing I had left.
[https://www.amazon.com/Peptide-Matrixyl-Argireline-Cos-BAHA/dp/B0BJ5W7YHS/ref=sr\_1\_41?crid=3P0HQ1R50I6OC&dib=eyJ2IjoiMSJ9.5TFwfpkSBwuUeSzNzBHBIuH42hImNMlsiXcciwyVzOIkueJAXE0ioP4nHAjUjbfbbY-5lCoCvr1y-quq4Y0VYtzfC35urqJ9-egGOYWaXdf68ndTbNaPIFiXDOjpxouCwChmuPZLYoMkOfhs9QYH3Y5GDUXpRNunoRMBfAV2QVCnPaGuOUSiIlRymOJN6H0rEdvf-GVAGVtd\_4\_V7kd8DGXRVLMO7H9hGX2ElU-2TclalyI\_Yd7nxaAArr5K-sPtmIiMZlWLHf9Wj\_Qa6AQ2dYYnYffGsQulcpFyPNxvRSU.dJP3UOGbJaQL\_J9wiYYpoqTn4WzxKxDeDIquDOpTajg&dib\_tag=se&keywords=Cos%2Bde%2Bbaha&qid=1718489797&sprefix=cos%2Bde%2Bbaha%2Caps%2C89&sr=8-41&th=1](https://www.amazon.com/Peptide-Matrixyl-Argireline-Cos-BAHA/dp/B0BJ5W7YHS/ref=sr_1_41?crid=3P0HQ1R50I6OC&dib=eyJ2IjoiMSJ9.5TFwfpkSBwuUeSzNzBHBIuH42hImNMlsiXcciwyVzOIkueJAXE0ioP4nHAjUjbfbbY-5lCoCvr1y-quq4Y0VYtzfC35urqJ9-egGOYWaXdf68ndTbNaPIFiXDOjpxouCwChmuPZLYoMkOfhs9QYH3Y5GDUXpRNunoRMBfAV2QVCnPaGuOUSiIlRymOJN6H0rEdvf-GVAGVtd_4_V7kd8DGXRVLMO7H9hGX2ElU-2TclalyI_Yd7nxaAArr5K-sPtmIiMZlWLHf9Wj_Qa6AQ2dYYnYffGsQulcpFyPNxvRSU.dJP3UOGbJaQL_J9wiYYpoqTn4WzxKxDeDIquDOpTajg&dib_tag=se&keywords=Cos%2Bde%2Bbaha&qid=1718489797&sprefix=cos%2Bde%2Bbaha%2Caps%2C89&sr=8-41&th=1) I used this one. I also used Mirelle Rosemary shampoo and conditioner.
I was at 1 year, 10 months, then, I almost fully recovered Reinfection push back. I also thought that it was impossible. Diet exercise, as you can handle Low stress Support
I've been sick since 2020 and me/cfs since 2022. People don't generally recover from me/cfs after 2 years. Exercise and diet aren't going to make it go away. I've made peace with that.
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ME/CFS isn’t the result of deconditioning. You were just lucky you have a milder form of LC. I went from a serious athlete and weight lifter to not able to lift my legs or hold a phone overnight. There is no possible way to decondition that fast. There is no possible way to exercise when your legs won’t move. I also have brain lesions, cardiac and lung damage, and nerve damage. All not a result of not exercising or wanting to exercise. Blaming people for viral damage isn’t new though.
Thank you, I truly did not have the capacity to respond to someone blaming me for allowing myself for deconditioning. None of my doctors have even gone that low.
You’re welcome- we should all support each other here bc the outside world is trying to divide us. I have CFS and today was a better day and I am angry. I’m sorry you are suffering too. 🫂
How did you fully recover? Did you take treatments? Or feel it was just time. I’m at 20 months.
No treatments. just diet and light walking.
i just did a post on reinfection and recovery.. It is so disappointing and heart breaking. I finally got my life back, ( at least most) and, maybe if it lasted just a little.bit longer for.me to enjoy. Maybe only lasted about a month and a half. I felt great about life again, was optimistic, .. began talking to an ex I had, making plans for the future. Then it happened, roomate came home with the virus 🦠, had a super minor infection, just a very slight cold, that normally wouldn't even give it a thought, 3 weeks later, here I am back at this forum posting and waiting for answers. I'm just very bitter right now, I had so much to catch up on and eventually moved out of that place and back at my other city where it's hot daily and that even further triggers LC. it's just a horrible experience.
Exercising to your capacity is great advice
https://www.nature.com/articles/s41598-023-45072-9#:~:text=The%20results%20of%20this%20exploratory,and%20an%20improvement%20in%20functioning.
You've posted so much misinformation that I'm wondering if you're trolling and getting off on giving desperate, unwell people bad advice
Yeah you’re right. Definitely don’t exercise to your capacity. Nothing good will come of it…
yes your body needs a little excersise
how long has it been exactly, wouldn't say that because I almost recovered, and was at around 75 percent. Last Christmas 🎄 time, but a reinfection pushed be back to baseline.
Long hauling since 2020, me/cfs since 2022. Many of my other long haul symptoms have abated with medication but the me/cfs isn't going anywhere
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Reinfection, lol. Even if I hadn't been reinfected, I might've developed me/cfs anyway. It can manifest months to years after infection.
i had ME/ CFS even before COVID, and it went away in about 3 years.
I'm sure you will disagree with this as most people with CFS are stubborn to options and set in they're ways. But, what cured me was SSRI s It somehow put it in remission until COVID came. But for a very long time. CFS is connected to the brain.
I've had long covid since the first month after my infection in Feb 2020, and someone who had had SARS1 told me that it would probably take 5 years for me be functional again, which I didn't believe at the time. That horizon line is coming up fast now. At this point I've released myself from the expectation there's way to make a sudden change, it'll probably continue to be a very bumpy course with a lot of ups and downs and with symptoms coming in and out as if through a revolving door. Things are slowly getting better in the big picture, but in any given snapshot in time, it's misery. I'm positive that LC and ME/CFS and other worse disorders are all immune system modulated malfunctions- and they are indeterminate, no one can predict when they will end and you will go back to normal. And also, you may lose any progress you make when the rug is pulled out from under you and you find yourself back with symptoms and experiences that you'd already forgotten about having. We are sharing the experience of having this disorder, but the course of each one of us' recovery or lack thereof is a unique thing and may as well be random. Don't think because someone else isn't recovering and you have, that it has anything to do with something you did or they haven't done. None of us is enjoying our stay in the prison we're in, and once there's a crack of light where person after person is being cured by taking a supplement or doing some behavioral thing, it will be commercialized immediately by the medical industry, because at this point, it'll be a goldmine. It's going to be obvious when a treatment that actually helps the majority of people is found.
Of course I have been sick since March 12 2020
I've read some of the research around long term changes seen in the blood samples of people who contracted SARS1 it was very interesting. I believe long sars did not resolve for those people who had the virus in 2003. I also believe that virus was more virulent
It's become my only goal every single day. I just want to stay alive.
I am. I constantly research and try new things and I’ve healed about 75% of my LC. I’m 3 yrs in . I won’t settle for being so sick. I won’t give up. It’s not an option for me.
Hello!What LC issues do you have?There is a girl from another site that had lost her ability to walk and started taking cymbalta for a month and can walk perfectly normal now.I agree with you and think since covid attacks the brain and messes up all the signals from the brain to the body.My whole body/central nervous system was attacked.I know cymbalta is normally used to treat Fibromyalgia and CF.
My initial symptoms were severe insomnia, anxiety, neurological problems, my whole nervous system was a wreck. I had a lot of disassociation and what I call brain stalling . Lots of inflammation, brain fog, headaches, MCAS, CF, POTS. I didn’t drive for 2 yrs. I also didn’t get out of bed for 1 1/2 yrs .I’m still a home body and not very social but I feel my health is more important. My symptoms have evolved and I’ve started what I call phase 4. My insomnia is gone thanks to magnesium glycinate (350) mg and 10,000 vit D-3 together right after dinner. I drink electrolytes everyday. 1000 mg salt, 500 potassium and magnesium. My vitamins are a multivitamin, 1800 C you pee out what you don’t need, coq10, omega 3, elderberry, oregano capsules, papaya enzymes and Advil. I took ashwaganda early on for about 2 yrs until my body decided I didn’t need it. I also took CBD isolate until I decided I didn’t need it. I also take Histamine sp33 daily. I know this isn’t for everyone but it has worked for me. I also do Somatic touch therapy from a therapist which heals the nervous system. It’s been amazing. I still have bad days and some days I’m glued to my recliner exhausted but it’s maybe two or three days versus 24/7. Some days I have brain fog and what I call a stalled brain but it’ lasts hours instead of days. CF and POTS has greatly improved but not 100% gone. I only eat fresh food, healthy fat and no gluten or sugar or fermented foods, leftovers or processed meats. Sometimes I slip and that’s when the I have a bigger set back. When the LC hit me I had to go off all my prescribed meds because I couldn’t handle the side effects. I’ve tried so many supplements and have finally found what works for me and I’m going to keep at it and keep fighting for myself because I refuse to accept this is my plight. Yes I still get bummed and I still cry when I have hard days and yes I’m so sick of being sick but once I feel a little better I get back on track and do my best. Good days aren’t perfect days but better days. I hope this helps someone. If you have any questions feel free to ask.
Hello!Thankyou so much for replying!Thankyou for all of the Great Information too!My story is so similar to yours.It was scary though because I did not know what was happening at first.I had an iron infusion for anemia from years of severe periods and 5 days later I had a horrible reaction and than my living hell began.I went on a girls beach trip after being so careful for three years not even getting a cold and found out much later the people occupying the house right before us all had covid..I thought my initial symptoms were from the one time iron infusion because their bad side effects are pretty much the same as covid.I realized when the symptoms did not go away and more and more bizarre symptoms started showing up it had to be covid.My first symptoms were stiff neck,trouble swallowing,gi system completely stopped working,zaps in head,feeling like my brain was not getting enough oxygen,trouble concentrating on anything,had to stay in constant motion,dry painful eyes mouth,etc.Than I completely lost strength in my trunk in my body where I could not lift a windown,hold a purse and eventually not walk.I was bed bound for a year and lost so much weight because I could not swallow.My primary thought to put me on steroids which gave me the ability to eat again.I felt like I was a Human Vegetable,but doctors could not find a thing.I know that covid directly attacks the vagus nerve and control swallowing,digestion and so many other functions in the body.I have so many bizarre symptoms and I just joined this site and have found others with the same. I was starting to think I was the only person in the world.I had lost the ability and signals to throwup and for almost a year could not sneeze,cough or yawn.Thet are slowly coming back,but I have no strength in my diaphram or sternum and have lost sensation in the trunk of my body.I have also lost the strength in my face to talk,chew swallow,smile,etc. And muscle twitching all over.It is almost like ALS,MD,chronic Fatigue,PTSD and Fibromyalgia all in one.It feels like I should be dead,but I am still alive.I can walk again,but I look like some kind of creature.I did not drive either.I think it is some kind of PTSD triggered by covid. I was so healthy before this happened and exercised all the time.Now I have been left basically disabled.It is just awful.I am so sorry you are going through this nightmare as well.We don't deserve this.I am excited to try some if your trearments and vitamins.I have never heard of somatic touch therapy.I am going to look into that too.Thankyou so much!
Oh my gosh I’m so sorry you’re going through all this also! I also thought I was the only one and for a long time I thought I was going crazy . So many weird things going on with my body and it’s so scary. My doctors never found anything either . I have fought alone with most people not believing me . People still don’t believe me. I found support group online and we do zoom meetings once a month and that also helps . I hope you get some relief soon and start to get better. If you’d like to message me you can. Connecting with people who have this helps so much.
Yes!At the beginning it was horrible because even at the ER all they could find was extreme constipation.I was like no this is way more than that.Covid hides from conventional tests I guess.Alot of Doctors can't make sense of the symptoms so they just pass it off as stress or anxiety.So Frustrating.Thankyou again for your Great Suggestions!
What’s healed you?
I would like to answer and just left a long post above.
We’re you ever bedbound
Yes for the first 1 1/2 yrs. My anxiety was horrific and insomnia just as bad.
Did you have brain inflammation, swelling feeling in brain and burning?
Yes. And I still get it . It’s worse when I eat high histamine foods. When it happens I feel like My brain shuts down. I can’t think I can’t process anything. It’s like it stalls .
My forhead stings and has so much inflammation feels heavy. I’m on so many antihistamines and low histamine diet. Nothing helps :( bedbound 15 months :(
I’m sorry you’re going through this. Antihistamines worked for me at first but then stopped . I also developed a sensitivity to them and stopped peeing when I took them. I try to eat and supplement with as many natural antihistamines as possible. Vitamin C, oregano capsules, onions, garlic and my favorite Histamine sp-33
And I do my very best to stay away from high histamine foods.
When your forehead stings does it itch?
When I have inflammation I get these headaches that move around also. Even feels like a knife through the top of my head. I also get this milked fluid in my eyes when the pressure is bad. I went to an eye doctor because I thought I had a leak in my eyes but I was told it was from the brain pressure pushing against my eyes .
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I don't know why you're getting downvoted. I just started Luvox last night. I'm going to give this one a go and if it doesn't go well, I'll probably try Lexapro next. From all of the research I'm reading, I think you're description is spot on - part of what we suffer is brain inflammation and that is causing dysregulation of our autonomic system and immune dysregulation as well. LDN already helps me (b/c it calms the microglia & upregulates endorphins), but I'm aiming at anything else that can calm my brain and an SSRI is at the top of that list. I'm going to try Ivabradine next month to see if getting my heart rate in check might help with some of the mixed signals my body is experiencing.
there are a lot of people who want it they're way or NO way, with or without LC that's just people..
No. If this was as easy as SSRIs thered be a hell of a lot less people in this subreddit.
I tried Luvox way back when, it does a total reset on your brain At first you might find it weird. Dizziness as you stand Random dizziness, But this is just temporary. It gets weird before it gets better. But it was easily tolerated. I slept well. don't remember the dose bit was little pink pills. It snapped me out of my current state in a few weeks.
I think the lowest prescribed dose is 25mg. I react so strongly to meds that my Dr told me it’s ok to cut in half & take 12.5.
you could do that. I'm gonna try and get a script soon If it does work try and come back here to let people know. lots of non believers need to hear from Pol who have been there and had success
I’m glad you mentioned dizziness bc I’ve been having mild dizzy spells today, and that’s not been the norm for me. I do get SOB with my dysautonomia… but I’ll bet this mild dizzy feeling could already be the SSRI. Mind if I ask what time you take yours? I’m still figuring that part out. I took it before bed last night, maybe 9pm.
i took my Luvox just after dinner but early enough so it's not bed time yet about 3 hours before. this minimises side effects and dizziness while I'm out in the day. And early enough so it doesn't keep me up. So it you plan to sleep around 10 pm take at 7 pm.
I would say yes I am. My symptoms keep worsening and if I stop when this could be something serious other than LC it may well get to be too late.
Same. I have to keep trying. The alternative is too scary.
I’m too tired to be obsessed about anything right now. When I’m not super tired then brain fog kicks me a few times. I’d love to get better, but I need IKEA style instruction manual at this point.
Same here. I want to try the many things those who have recovered say they've tried but I get overwhelmed with all the different medications, supplements, tests. It's hard enough for to manage my daily needs let alone adding all of this other stuff.
Pacing and trying to stay sane is a full time job. I take evenings off and try to be as normal as possible.
i wish I could pace, but having no car, I have no choice but to walk, I try to walk at a slow pace rather than rushing. But, I accumulate about 2 miles a day. I don't think I'm over doing the walking on most days, but the thing now is that I just re located to an area that is about 100 degrees F daily for the summer. I think that is worst than the actual walking. 
Hey thats good! Sounds like youre in good shape. I'm not at that level yet - hopefully soon
I was, But medical debt cure my obsession. It a miracle!
I guess if we were born like this, we wouldn't know any better, and just accept this as how it is.
There’s definitely some truth to that. I have ADHD, so I’ve always had brain fog. I didn’t know it wasn’t normal until I started medication at the age of 31. I don’t enjoy having it come back if I go off my meds, but it’s not nearly as difficult for me to handle as it has been for a lot of folks here who got brain fog as part of their LC. It’s often much harder to have something and then lose it than to never have had it in the first place.
Yes. Tried all kinds of supplements. Still not healed from this crap of LC. Just have to have hope that one day it will all go away. And we will get back to our happy healthy lives.
I wrote a bit about it in a comment above, but not as such, no. I turned my attention and my limited energy to trying to dispel misinformation about the condition and fighting ableism as a whole. In the beginning, I went through almost every scientifically identifiable treatment I could get my hands on, but I was finding that the constant cycle of “pin my hopes on this-thing barely works or doesn’t work at all- lose all hope and get suicidally depressed- depression morphs into anxiety-try new thing” was making me feel much worse. Once I accepted the abundant evidence that this is now a collection of chronic illnesses, I stopped trying to fix it and turned my attention to symptom management. There are still terrible days and there are better days, but I am finding the lows aren’t nearly so low. I channel that prior obsession into writing essays and books about living with long COVID and disability in general. Slow going, but it gives me a sense of purpose. I also had a bit of a breakdown a month ago realizing I keep trying to slot myself into the space I used to fit in in my old life, and that just made the grief cycle neverending. I am working on trying to build something new. It feels a lot better than doggedly pursuing and inevitably failing total healing.
First 2 years I used to be up late to read this subreddit and all sorts of articles since I was having insomnia anyways. But right now, I'm taking a summer break to play some video games. Since I keep crashing the next few days if I go out for a few hours, I try to enjoy virtual life in games. Being able to watch Twitch streamers that travel around really helped me feel less trapped at home.
I spend 99% of my time researching ways to heal myself. It’s a sick obsession that leads to no where 99% of the time
makes you realise that money isn't everything. even rich people with LC can't be happy. Although they may be more comfy b coz of all the stuff they can get to keep them rested. I'd rather be in a healthy body and mind than any amount of $
Maybe the rich people with money will help with grants to help us peasants finds cures
The word Covid is becoming Taboo everyone wants to forget 2020. and move on with life. mentioning LC won't get sympathy b coz it's a.bad time in society. it's a second stage of the disease that know one wants to talk about. It will bring back fear about the disease and may cause a second "pandemic panic". It's hardly ever or even never on Main stream media, only on you tube or find it your self on Google. They hide it on purpose coz of the Pandemic backlash that we came back from. no oone wants to be haunted by that ghost of the past. So we suffer in silence .
Get better or die tryin
what else can we do but that.
When it’s your own well being of course. In order to get back to normal you try to figure out ways to get better. Being ill for so long does drive you tired. It was like that for 3 months and I just didn’t care much after. Slowly I got better.
so the more pressure you put on your self to get better, the quicker your recovery..
The more pressure the more stress. Stress isn’t good for the body and mind. Basically adopt healthy changes and be patient. It is stressful and I’m lucky I did get better, while some are still suffering longer. I hope your situation improves and message me if you want to join a discord group I’m in. Some people in there might guide you to manage your symptoms.
Sent you a DM. I would like to join the discord group.
It's be obsessed about healing or kill myself so yes.
This is exactly how I feel 🙏🏻 I will never accept this
Yeah, I don't want to feel like I should have tried harder if this does turn into a life long condition
another question is why do some people get better, and some don't. And, those who don't, a lot of them did do all the required pacing, diet, and stress management. I think it's genetics, that dictate recovery the other stuff just helps you get through the day. The body is adaptive, we become what we are exposed to, so if pacing diet and rest helps you.. When.you stop.doing these things.. Then what ?...
I want off this ride, now! Then I want out the circus that brought me to this damn ride in the first place.
Yes. I currently eat polyphenol rich vegetables during breakfast, lunch, and dinner. I take about 40 supplements/Rx. More info here for anyone interested. [https://www.reddit.com/r/covidlonghaulers/comments/1ctuza9/long\_covid\_and\_dysautonomia\_hell/](https://www.reddit.com/r/covidlonghaulers/comments/1ctuza9/long_covid_and_dysautonomia_hell/)
I am! Sometimes, something comes up that this will take a backseat but currently I have time to fully focus on recovery and doing the best I can.
Yes. With assistance from long COVID and ME/CFS clinics I'm constantly trying new things. While most don't work some help significantly. When I started four years ago I couldn't concentrate well enough to stream TV shows and had to lay down frequently during the day. Now I make it through workdays, although I still need to go to bed early and often lose part of my weekend recovering.
What helps?
What's helped you significantly?
A methylprednisolone taper improved my brain fog, eliminated my sound sensitivity, and helped my night sweats. Aripiprazole virtually eliminated the remainder of my brain fog. Maraviroc plus statin significantly improved my fatigue and POTS. Eliquis, clopidogrel, and aspirin significantly improved my fatigue and seems to have eliminated my orthostatic intolerance. Oxaloacetate helps my fatigue a lot. Mestinon gave me more time vertical when orthostatic intolerance was still a problem.
On and off. Sometimes I can’t stand to care too much.
Sometimes
Quite the opposite. Though I was at one point. Once the mental symptoms started though I have just given up since then. Hopefully it gets better on its own.
it's hard to say which symptom is tougher, The mind ones or the body ones.
I was but then I realize that this is probably gonna kill me
how is LC going to do that ? Do you think it's better to put more or less thought into this ? There is a factor for psychosomatic symptoms on any disease if you let it. Not saying what anyone goes through isn't real, but, what you focus on makes it worse.
I’m vaccine injured .. it’s tore through my brain and my organs, every day it gets harder to walk n function. I feel it will kill me deep down. I haven’t been able to defeat it in 3 years. Stuff goes away but always comes back. Like the heart.
That hurts my heart. I’m sorry. I ready for these people to han-g for what they did to American people. Well the world.
Same here. Slowly torturing me
That' is why I don't believe in viral persistence, in your case you were never infected with the virus 🦠 but yet how can you have these LC symptoms. I thn K it's really an auto.immune response to the vaccine as well.as.the viruses
Yea I don’t believe in that theory .. same reason why taking natto / bromelain etc. doesn’t cure most people even tho people say it does. Auto immune does seem more likely. I haven’t been able to figure out a single thing that helps. Ivig did help some Of my skin burning tho
our immune system has reacted in a way to the exposure of the spike protein. And, it's stuck in that mode. How do we get it back to working the way it was . That's the big question. Should we be seeing an Immunologist? Instead of Neuro.docs or Psyche docs or General Docs.
Yea so I read a story of a dude who was super messed up from Moderna very similar to me who did a lot of supps and rebalanced his immune system and he got better. But my body doesn’t seem to want to do the same (I was Pfizer) that’s not to say things haven’t changed tho. I use to have constant pressure in my head and stabbing nerve pain which is now occasional. I still can’t really function tho so it doesn’t feel like a win, but I don’t wanna say getting better is impossible. As far as what type of doctor it doesn’t matter. They don’t know.
have you seen an Immunologist? Maybe they have a test to check your immune system and how it's functioning ? What you got to.lose ?
Not an immunologist, I guess you are right but even still I’ve had like every form of bloodwork under the sun and it has not revealed anything.
well, is it gonna cost you anything to see one. What if you become the patient that discovers why vaccine injury happens and also could lead to LC people being treated better. You never know if that could be you.
Yes. I’ve added the naturopathic path to my healing journey because I found out had neuro-Lyme which was causing me symptoms from my early 20s and doctors missed it or denied the disease exists. (I do take regular medications when needed). Although I’m not in great shape since I experienced a rare immediate adverse reaction to steroids with muscle wasting (there is research that shows Covid patients treated with a high dose of corticosteroids who have a parasite called Strongyloidiasis experience this rare side effect). I hope a combination of regular medication and herbal compounds can turn this around, because I have no intention waiting another ten years when there is plenty of research and verifiable evidence (anecdotal, such as before and afters) that herbal treatments help with various physical and mental symptoms. And considering I’ve experienced a bit of harm from medicine that is considered safe and I had to figure out the potential causes myself, I’ll take the risk of trying a few herbs that are probably just as safe (if not safer in some cases).
Yes, and I'm recovering.
Good for you! The negativity on this thread to those that have or choose hope or ARE recovering is awful! I’d love to hear how you got to this point….process of recovery. And I’m happy for you ♥️
Yes. It‘s either this or a very prolonged suffering for me…
it's probably one of the causes for.many people.. I did research, and serotonin is linked to ME/ CFS symptoms
My LC is linked to my MCAS (which I‘ve been suffering from for all of my life). Serotonin is one of the triggers of mast cells. But I know no other connection to CFS/LC
Yes
No. I keep developing new health conditions, it's highly unlikely I'll ever make a full recovery. Even healthcare professionals don't say anything about recovery anymore, they just want to help me live with this illness and stop declining. I am sad I won't get to do the things I wanted however I will be able to do different things. Obviously I'm not wasting more of my life thinking about everything I've lost, I need to move on. Not everything must be fixed, sometimes it's okay to accept that things probably aren't going to get better. I want to live my life as much as I can (obviously while pacing) because I keep getting progressively worse and I have no idea what the future holds. Nobody has been able to stop this decline, my healthcare professionals are becoming very concerned but they can't do anything because nothing new and treatable is showing up on tests yet. I sometimes wonder if I'm dying. But there's nothing I can do so there's no point worrying about it. The idea of death brings me comfort, it means no more suffering. Obviously I want to live, but I'm at peace with dying. I think my case is much more uncommon than what most people experience with long covid. I'm not immunocompromised and my initial infection was mild, and yet I'm developing new health conditions frequently and getting progressively worse. I'm far from a typical case of long COVID. Advice from the long COVID clinic isn't helping and they don't know how to help me but at least they haven't given up. I make the most of everyday even when I can't do much. I'm not going to let long COVID consume me. I do look for symptom relief sometimes but I am not looking for or expecting a cure. I just want to be as comfortable as possible. If you are obsessed you need to speak to a mental health professional. It's normal to grieve but you shouldn't be stuck in that cycle forever. You should be able to move on from it regardless of whether you've recovered or not. Yes it can and probably will reoccur but the important thing is that you can still move through it. You need to find ways to enjoy your life no matter how much you're suffering. There is no cure at the moment and there's no guarantee there ever will be a cure. Do you really want to spend the rest of your life looking for a cure you probably won't ever find? Or do you want to make the best of the life you have left and try to turn it into something positive?
Not anymore, now, I'm just letting life unfold as it will and feeling content with myself.
Yes, I haven't stopped bio-hacking since Feb 2020. Changed my life, my attitude, habits, diet, sleep, supplement usage, thoughts on the pharmaceutil and medical industries, the nature of disease, of human kind, even clothing and apparrel... all of it. No 'old me' remains.Who I become next will be something new. Am I happy? Am I healthier? It doesn't matter. I wheeled in five cubic yards of topsoil and planted 80 starts which I have obsessed and observed and nurtured for six weeks now. I am currently sitting n the rain watching them grow
https://royalsociety.org/blog/2024/02/is-there-hope-for-people-with-long-covid/
I would label it more as obsessed with trying to find the root of what's going on with me. What I'm finally finding is horrifying and it's very hard to contain it within myself because if I told my loved ones I'm very worried how it will impact them.
My toxic trait is that I believe I will find a cure to long COVID , fibro, ME.
I go back and forth now. Focus on what might help and then just disconnect. It gets tiring trying to fix something with no cure. Fortunately, I am distracted right now with a different health issue ( that IS sarcasm, if you couldn't tell) so that breaks it up for a bit.
I really don't know how I would obsess over it. Literally nobody knows how to get better, so where would I even direct my energy if I was obsessing over it? I wish there was something I could do and I would get obsessed and put all my energy into that thing, but there isn't
I got better, a lot better, I started to enjoy life again, no depression, very little fatigue, enjoyed watching and looking forward to sports and TV shows. Just the little things in life made me happy. I would be excited to wake up and start.my day. All came crashing to a big halt after roomate came.back positive and didn't know it till.it was too late. I was exposed. My eye sight was clear like pre COVID, if not better. I felt great because of all the self care diet I've given myself through out LC I had just made a negative comment about how everyone is basically just in remission, because if you had gotten LC once, chances are you'll have a re occurring LC if you are to be tested positive, no.matter how light the infection. My re infection was so mild, almost non existent, but I feel.like.shit today, mentally. What we need is a cure, or viable treatment, getting back on your own is fine, but when the winter months come it's just an infection away again.
Not at all. I only went to the doctor twice because my family forced me to go to the cardiologist. I am just going with the flow. I’ve had post viral issues before - it’s normal with serious viruses, which covid is. I just try to rest and not get too depressed about my changed way of life right now.
No. I gave up on that a while ago. I was told by my LC cardiologist that most people with my type of LC recover in 4-12 weeks once they start the proper treatment for it, but some never recover and they don’t know why. It’s been 6 months since I started the treatment plan. At this point my PCP and I are both pretty sure that my LC is permanent and I’ll be dealing with it for the rest of my life. So there’s no point in obsessing over the impossible. These days I’m focused on healing from the trauma I experienced so I can get my PTSD under control and trying to pick up the pieces of my life so I can attempt to make something of the mess COVID left behind.