I’m scared

Mental Health/Support

it just keeps getting worse no matter what I do or don’t do. it’s so hard to stay hopeful when it isn’t even staying at one level. it genuinely feels like my body is breaking down gradually but it’s invisible to everyone and doctors brush me off.

from what I can remember there’s been 3 stages of this illness for me, one from jan 2022-jun 2022, then from jun 2022-oct 2023, and now I’m in stage 3, where my fatigue, pain, brain fog and anxiety/mood have ramped up to being almost unbearable/non functional.

I’m terrified of the day I wake up and it’s worse again. and it’s so hard to think about the future when it feels like everything could change. help

in covidlonghaulersby 482doomedchicken

98%

3mo

mmbellon

3mo

I'm with ya, there's been many stages over 2.5 years but this one has me completely breaking.

482doomedchicken

3mo

sending you strength

mmbellon

3mo

Appreciate it. Same for you. I know how hard the fatigue and mental game can be...just to even get out of bed. Not to mention on top of all the other symptoms.

hyperdikmcdallas

3mo

I’m scared with you brother I wake up every day with my breathing sometimes ok and sometimes very bad I never know if I will be able to breathe

482doomedchicken

3mo

that’s really stressful man. I hope the doctors are taking you seriously

lonneytooney

3mo

That’s how I am hit or miss for me now. Like fine for two weeks all day yesterday gasping for air. It’s sucks no doubt. My fatigue has sit back in as well. Long Covid round 2 I pray to god not.

ScaryCryptographer7

3mo

get puffers from your Dr. splash peppermint oil on your chest if you are left to fend for yourself.

lonneytooney

3mo

We all are left to fend for ourselves I’ll try the peppermint thanks.

ScaryCryptographer7

3mo

might be stingy on plain skin, either dilute with a cream or oil...OR full strength on a cloth napkin. in an emergency scenario plain skin won't be a problem...just quite sensory

ScaryCryptographer7

3mo

I feel worried...the extra strength white halls menthol. A friend to gentle pound on your back. Ask google for help clearing your specific symptoms...might be a herb for bronchial complications, or something to speed up circulation.

that's an awful and scary state to be enduring. I hope you can find incremental steps to strengthen your breaths.

[deleted]

3mo

Yes, I've thought a lot about how Covid may cause genuinely new autoimmune diseases for which there is no test whatsoever, and how severe uncontrolled autoimmune diseases actually are. Death within 5 years max did not seem unlikely to me based on my symptoms.

But I learned that autoantibodies will activate when encountering the pathogen they were created to target, and otherwise they ramp down quite a bit doing damage much more slowly, so I decreased my rate of exposure as much as possible and was able to recover quite a bit that way.

What is your rate of exposure to Covid?

It's also possible for the immune system to activate due to exposure to other things such as foods, air pollution, mold, etc. Are you seeing anything like that happening to you?

Wild-Worldliness3803

3mo

I agree wholeheartedly, this is a new autoimmune condition. I often wonder how many people biologics could help for LC 😔

[deleted]

3mo

I did get RA after a reinfection and was initially given DMARD pills, but ended up requesting a biologic after reading a study showing that biologics reduce Alzheimer's risk in elderly RA patients by 19%. I figured it could help a middle aged person with brain fog and yes, after two injections my Long Covid brain fog reduced by 90%, so I have the impression it is definitely neuroautoimmune in nature.

According to Japanese researchers there is also the possibility of chronic infection and inflammation of the nasopharynx affecting the neighboring hypothalamus as well. They are seeing that physically cleaning the nasopharynx can alleviate neuroinflammatory symptoms as well: https://youtu.be/IpCF3EqKWXM?si=GEynlTkaEWqegjPb

Dysregulation of the immune system is a very complex and severe problem it seems.

Wild-Worldliness3803

3mo

That’s incredibly interesting! I had an autoimmune condition going into LC that I had managed through nutrition and lifestyle changes, but LC blew that out of the water. I’m back to 99% recovered w/flares due to stress, but it has taken a monumental effort and I don’t think would be easily replicated or affordable for most. Expanding indications for autoimmune medications to include LC would be life changing.

I’ve read that individuals with autoimmune conditions are more at risk for LC, so I sincerely hope that this is being actively studied in trials.

BunnyMama9

3mo

If MS is a post-viral reaction to Epstein Barr, genuinely believe that this is covid's version of MS. It just hasn't been named as its own disease yet. I have been saying for 2 years that I was experiencing a brain injury from the impact on covid, and doctors rolled their eyes and talked to me about anxiety. Now there are studies saying exactly what I said, except more sciencey.

Cherry_xvax21

3mo

Yes! My medical records indicate “major depressive disorder “ as a diagnosis when I was initially experiencing anxiety, heart palpitations and shortness of breath. That later became an issue when requesting disability leave when I was unable to work. It’s bothersome as that is not my issue nor I believe is a proper diagnosis.

Health_Promoter_

3mo

Many vitamin clinics are owned and operated by doctors. The one I go to is owned by a few henry ford health system docs as a partnership. So I feel good about their recommendation and I have gotten multiple IV infusions

10 Grams Vitamin C (this heals a heck of a lot!)
800mg Glutathione
300 - 600mg Magnesium (done the lower and the higher)
200mg NAC
and of course the Sodium Chloride fluid that's in the bag that rehydrates

I always feel better after. There is no way to get that much Vitamin C except through IV - the stomach just cant handle it.

[deleted]

3mo

I love Vit C, 'Dr Yourself' is an interesting site to read up on it....

Vit C cured me of a bad chest infection many years ago, that 2 courses of antibiotics had failed to cure, I was taking around 20 grams a day for several days, in divided doses, 3,000mg, then 1,000mg every hour or so.... I had zero tummy troubles, so it's perfectly possible to take that amount orally, can't say how much is lost through the digestive system tho, but I do the same anytime I have flu, covid or whatever...

anyone with a sensitive stomach could use a buffered version such as Sodium Ascorbate, could be useful for anyone who can't afford, or doesn't have access to, IVC

Health_Promoter_

3mo

That's great to hear! I believe it!

The vitamin clinic I goto gives up to 100 grams in one infusion to cancer patients if their doctor wrote a prescription for it. They give potasium along with that amount to help facilitate cellular absorption

That's what gave me confidence to try it. I figure if someone battling that disease can do 100 grams, I can do 10.

Think of the order of magnitude in differences to oral... when you've got a serious illness, this can be a game changer.

A certain football team came into town and had the clinic come to their hotel before a game, and some 20 players received 800mg of NAD+ before the game!!

Infusions are powerful

UnionThug456

Mostly recovered

3mo

I had a consult with a doctor (a real MD, fwiw) from one of those vitamin clinic/IV hydration places and he said that the vitamin c infusions really help most long covid patients. He said especially for those who have been helped by LDN (which I have), he said that those are the specific LC patients that get a lot of benefit from the vitamin C infusions.

I actually had a consult with him about peptide injections and he brought up the vitamin C infusion as a possible alternative so I don't think he was purely trying to sell me on it. The infusion is actually cheaper than the peptide injections so that also leads me to believe that he wasn't trying to upsell me.

Health_Promoter_

3mo

That's great to hear! I'd be interested to hear if you go forward with any infusion and how it helps

Cherry_xvax21

3mo

I’m interested in trying the infusions. Need to find a trustworthy place. Maybe my local holistic store knows. Are the infusions for the vit C and sodium chloride or the others as well? Thanks!

I do take NAC daily and have improvement but I have many ups and downs.

Health_Promoter_

3mo

The 5 substances I listed are all added to a bag of fluids. So I'm getting all those things in a single infusion.

They can customize the bag with anything they carry.

Another potent substance they have is alpha lipoic acid - this is a MaJOR antioxidant and energy lifter as it support co enzyme A. It'll strongly support mitochondria and fatty acid oxidation

So find a trustworthy place and speak with them about customizing an infusion

Cherry_xvax21

3mo

Thank you!!! This is very helpful. I’m hopeful it will make a difference. We all need all the help we can get.

Pretty_Lawfulness_77

3mo

What does NAC do. I am taking Vitamin D3, a probiotic and a multivitamin and a Pepcid to keep inflammation down so what does NAC do and how does it help my sister brought me some when I got Covid in December

Health_Promoter_

3mo

NAC does a lot

NAC is a mucolytic in that it breaks down mucous, so clearance is improved

NAC interferes with COVIDs attempts to bind to the ACE2 receptor and infect cells, so it is antiviral

NAC breaks down disulfide bounds, which is a distinct and unique way it is anticlotting (helps prevent clots) without increasing INR or Protime, meaning it will not increase the risk of bleeding.

It is 1 of the 3 amino acids that make glutathione the bodies master antioxidant - which also makes red blood cells function.

It also qwells inflamation of the GI system. Those with IBS often feel relief from NAC

NAC can encourage more insulin to be made, and I sometimes see my sugar go lower from it. I take calcium to prevent going hypoglycemic if I'm going to be working out after having had NAC

I have gotten low blood sugar after taking NAC and walking 4 miles. Calcium prevents this for me when I'm having NAC close to a workout

Pretty_Lawfulness_77

3mo

Thanks

TemperatureSad1825

3mo

Same. I had a good cry today. I feel so helpless and hopeless.

jeantown

4 yr+

3mo

I feel you. I don’t have much else to say, I just feel you. I got woken up by chest pains for the first time.

princess20202020

3mo

Do you feel like each stage has been worse or did you get some relief over the summer?

482doomedchicken

3mo

this stage was definitely brought on/made worse by winter, but it’s def been a progressive decline since the start. I still hope maybe summer will improve things a bit

princess20202020

3mo

Yeah I’m too brainfogged to really make sense of the timeline you outlined. But my condition improved quite a bit last summer and then just steadily deteriorated since September/October. Hopefully this summer I get some relief again? If that’s the case then it’s a strong argument to move to Hawaii or somewhere equatorial.

482doomedchicken

3mo

same it took me like 10 mins to write my reply above because my brain just doesn’t work😅 I’m hoping the summer will ease off some symptoms for you too, and yeah definitely feel halfway there with moving to a hot country haha

princess20202020

3mo

So sorry. This truly sucks and it’s crazy doctors just shrug off this level of disability and deterioration. Hope you feel better my friend. Hope we all do.

Worldly_Pipe992

3mo

Yup same was bad last winter Around March started feelings better around June figured i was outa this mess then July I loved into a moldy house and in 2 weeks everything came back. I am now currently completely debilitated I’d be better off not alive. Same symptoms you guys all talking about. Stayed for me on Oct 2020 then got the vaccine in April 2021 and then it all got horribly worse. Been up and down since. 100 percent summer warm sun makes it a bit better. I have a little group of people who I speak with daily and all are horrible right now most felt a better in the summer all got sick in 2020. Something extremely weird happening here. I’ve seen over 100 doctors from Boston to Germany no one knows a thing no help at all. Only help I’ve seen is from bio hacking and taking care of myself but those modalities as of lay have done nothing for me when in the past they did help a ton.

God bless everyone who’s got this nightmare

princess20202020

3mo

So interesting. I live in a region that doesn’t have hot summers. Usually a max of 70-75 degrees. And also doesn’t get super cold. 55-60. So I theorize that it’s not the temperature, per se, it might be the length of day or the barometric pressure or something

kaytin911

3mo

I feel the same, each year that goes by I get less and less accomplished of what I wanted to do. I am unsure if that sentence I wrote even makes sense from the brain fog

Hour-Elderberry1901

3mo

Bruh I totally understand the experience of not knowing if something you wrote even makes sense because of brain fog

nokenito

3mo

I feel ya. I first got Covid March 2020 and I’m still having issues. The third time getting Covid gave me a mild stroke. Not fun!

I’m better than I was, that’s for sure. What has helped me is a full vitamin regimen. Plus walking. Lots of walking with lots of breaks.

Plus low carb or no carb living.

Broken_Oxytocin

1.5yr+

3mo

It’s gotten to a point where I’ve suppressed everything. Even my fear. I was worried sick when I got LC. Even that is an understatement. Every day was shrouded in a thick cloud of doom and panic. At this point, I don’t care. Rotting in bed seems okay. I just have to wait and things will get better at some eventual time, right? I just don’t care. That urgency to get better is gone. I know I’m fucked and that I’ll have to wait a long time for a cure, so I stopped caring.

482doomedchicken

3mo

I kinda feel that too. I’m always either in a state of suppression and feeling like a robot or panic and hopelessness

WISE_ONE1993

3mo

Im the same im just over it, seems like the urgency is whats causing us to feel the negative emotions. We just have to try to make everyday the best we can, lets be happy with 4 hour naps, lets be happy with what we have. At the end if we recover we will have a story to telp and if we pass away well it was time to go. Be content with everything and enjoy the moment. I seem to very slowly improve but its going three years in july. I believe i must have gotten it again since and thats why my symptoms are bad, my sense of smell hasn’t been the same since the first infection in 2021 july. Its gradually coming back some days i cant smell things only taste and some days i can smell for a few hours then its gone or faint. I feel like i lost strength in my muscles, my stomach hurts randomly no matter what i eat. I can eat the same thing and one day it will hurt and the next day it won’t. Headaches i get these lingering headaches that last for days with neck pain and nerve tingles in my head. My memory is decent, but i get moments where i feel frozen mentally where its too much energy to talk or listen to anyone or anything. I also feel derealization sometimes where i feel like im not who i am i feel just bland, blank. B12 injections helped me a ton, sun exposure everyday for 30-1hr helps. But its all centered in my brain. Sometimes i feel retarded or just out of place. Like covid is in me and it’s possessed my brain. I feel cold randomly no matter the temperatures. Brain fog sometimes but improving. I fear reinfection, i fear 3-5 years from now we get another pandemic or a worse disease. Thats why i believe in just focusing on today. Enjoy the moment. Eat the burger, drink the soda, watch your favorite shows. Just do what you want to do while you can. Work less, spend less. That alone has helped me tremendously it’s just reduction of stress and do things one at a time don’t try to do 100 things in one day just spread it out and do what you can and take it easy. This is hard but we can make it. We have to believe that will make it. Our bodies are strong. Our bodies will fight for us if it’s destined for us to still be here, it does us no good to feeling anxiety and panic and urgency to just be normal again because that may never happen and just accepting that will free us from these negative thoughts these negative beliefs. I just want to share that and let y’all know that I’m also in the same boat and I wish everyone the best I love all my brothers and sisters here we go make it let’s make it, but it starts off with one day at a time remember that one day at a time. ❤️🙏

worksHardnotSmart

3mo

Could you be getting reinfected?

482doomedchicken

3mo

potentially. I’m immunosuppressed due to another condition so I’m very wary of social distancing and I don’t catch viruses too often but I have had covid again at least once over the last 2 years. I feel like there only so much you can do to prevent that :/

TheRawkk

3mo

This sounds exactly what I was going through and it turned out to be a simple vitamin D deficiency.

Have you had a complete vitamin and mineral panel completed?? Most modern medicine doctors do not test for this however it should be the 1st testing that’s completed.

When I went in for my exam, I even demanded a full panel, and he only tested for vitamin B 12 and a few mineral levels such as magnesium, zinc, copper and potassium.

I finally ended up in the ER weld later and demanded a full and complete vitamin and mineral panel, and they told me that they don’t do that in the ER. She promised me she would at least get a couple in there, which is when I found out that I had such a deficiency in vitamin D, that I didn’t even register on the test.

It’s very likely that this is the culprit for you. Remain hopeful, and go get the blood work taken care of immediately. Most Americans do suffer from vitamin and mineral deficiencies, which present themselves with the VERY symptoms that you are experiencing.

northrojpol

3mo

I would definitely look into your diet. I've switched to a low fat, plant based diet just recently. It's only been a few days but it seems to be helping me. At least, if you're not experimenting with diet already you might consider doing so.

Wild-Worldliness3803

3mo

I had 3 phases too and diet, supplements, sleep, and 1.5 LDN got me through the CF/PEM phase

[deleted]

3mo

Glad to hear the PEM was a phase for you. What is LDN? I’m sleeping like a child, taking D, B12, multi. Just started antihistamine + Mg bisglycinate. Praying for a change before all of my muscle and bone disintegrate

Maymay123roxan

3mo

I feel the same way in the last 2 years it’s came in stages and only gotten worse. I can barely get out of bed. I don’t know what to do or where to turn

RebelliousRainbows

3mo

I get you too. I have said to the many drs I've seen that it seems cyclic. I'm at the point where I feel very little optimism for it getting better but still have a slither left.

We will get there in the end. We have to✊

Master_Blackberry371

3mo

Praying for a miracle for you friend I'm here anytime you wanna chat ♥️

Worldly_Pipe992

3mo

Did you get the vaccine?

Fun_Algae7569

3mo

Deep dive here:

https://bornfree.life/understanding-the-model/6/updated-disease-model-wip/45/

Join the discord.

BabyArugulaPowder

3mo

what are you taking?

bear_lovr5647

2mo

You might have developed an autoimmune disease. I know this doesn't help make you feel better but I really think you should do some research and get tested for POTs and dysautonomia and stuff like that it will be better in the long run

bear_lovr5647

2mo

me when i make people feel worse

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