I feel like I’m slowly dying and nobody is helping

Posted by seekingsupport @seekingsupport, Feb 19 7:52pm

I’m at a complete loss. I feel like this is my one last ditch effort at reaching out for support. I only had Covid once back in the summer of ‘22. I was very ill for over 6 weeks and it affected my heart for about a month afterwards with pericarditis and tachycardia. I thought I made a full recovery because I was completely symptom free for over a YEAR. This past August I moved and a week afterwards I became ill again, (no covid but a myriad of other new symptoms including the return of heart issues). Since then I have progressively gotten worse. I’ve had every test done under the sun including an endoscopy, colonoscopy, MRI of my brain, countless EKG’s, tons and tons of bloodwork…I could write three paragraphs on all of the doctors and tests and debilitating symptoms. I was diagnosed with POTS in October. I have lost over 50 pounds and cannot seem to gain weight and I am continuing to lose weight. Nobody has answers except to take a beta blocker which lowers my already too low blood pressure and makes me feel even worse. I’ve been to the ER almost 10 times. I feel like everyone thinks this is psychological and they continue to gaslight me. Why are there zero resources for people dealing with this? I’ve been unable to work now for over 6 months. I’m living alone and it’s becoming hard for me to even care for myself. Where is the help? Why have we been forgotten? I have become suicidal every day because of how ill I am without any support. There is only ONE Post Covid Rehabilitation Clinic here in the entire state of Washington and I’m not scheduled to see someone until June! My heart feels like it’s failing and getting worse by the day. I don’t think I’ll be alive by June. Can anyone help me? I’ve joined the Dysautonomia International group but everyone in there has at least someone who is supporting them. My family has been awful, making it out to be severe depression or that I’m exaggerating to get attention since all of the tests come back negative. They tell me to drink more water, eat more salt and exercise. I went to the gym every day following the POTS protocol back in November and now my heart is much much worse. Someone please help me.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

law59 | @law59 | Mar 3 11:30am

Hi everyone posting here. As I lay here relating to each thing, may I share a heartfelt thought. Unfortunately incorrect or missing medical records can prevent care. Little by little, before you get tired!, if you can review the diagnosis on each visit to assure reflects your symptoms. If they dont, then please contact your healthcare systems medical record dept to process needed correction. Then the highlighted correction you have to handcarry/share with all current and future doctors without wasting your precious healing breath explaining everything on the phone trying to make appt, to the medical assistant before appt, to the doctor during appt, to the specialist referred to….. Hopefully when all those unnecessary calls/visits/paperwork time is reduced, your body can truly heal with the critical pacing/rest/patient time needed.! Fastest healing journeys possible to all🌈

Margaret Dick | @margaretdick | Mar 3 8:49pm

Just want to say you are NOT ALONE. Not sure if you use twitter, but I would recommend getting on there and searching Long Covid. There is a huge community. I'm so deeply sorry you're going through this. You're not crazy, you're not making this up.

katey122 | @katey122 | Mar 4 8:01am

I understand as I to feel that way especially on my bad days. I'm so sorry. I'm trying to get involved with people who are also suffering from long covid. It does help, misery loves company and we need to talk with others who understand and at times also feel hopeless.

j77 | @j77 | May 20 1:42am

In reply to @repl "You’re not alone. It feels lonely living in a world full of misinformed doctors who haven’t..." + (show)

@repl

You’re not alone. It feels lonely living in a world full of misinformed doctors who haven’t bothered to research and look up long covid. It seems the whole healthcare world gaslights what they’re ignorant of and then shame you! I have many choice words that are unprintable here for them!…

Please know that the system is broken, it’s not you. Don’t let their lack of knowledge/ignorance be placed on you as your shame. Or the ignorance of others (family) either. It’s theirs!
It’s honestly about finding only people who know about long covid to talk to. We are where you’ll find validation for what you’re going through.
Please trust yourself that you know it’s not in your head. We’re all here to tell you it’s not made up and NOT in your head! Also, there is hope and treatments. Don’t give up!

I think all of us here can relate to being dismissed right and left. I know I’ve been going through similar situations that you describe as well. I’ve been to specialist after specialist who look at me as if I’m mental, ER twice with no help, cardiologists, endocrinologists, rheumatologists, thyroid specialists, the list goes on…
I’m opposite of you where I gained like 40 pounds (full body edema) in 2-3 months and my whole life stopped in one day with severe shaking and heart palpitations, flushing, couldn’t sleep, felt like I was going to have a heart attack, full body shut down - my mind couldn’t follow conversations, my gut became severely constipated and bloated, my legs were giving out on me, even turning over in bed made everything worse. I haven’t been the same for over a year now…

The worst thing I did was listen to any of the doctors. They had no clue what was happening to me. They all looked at me, and weight shamed me as well as told me to exercise more and eat better -CHOICE WORDS! for them!!

I’m a doctor of physical therapy, I not only have been incredibly active my whole life and eat better then they do, I understand my body and what’s happening and know it’s not in my head. Yet, all the doctors still disregard both my knowledge and symptoms - dismissing me because I am a woman so it must be hormonal - bunch of small minded, lazy, uncaring individuals masquerading as doctors that shame patients for their lack of knowledge and ability. Seems the world is full of them these days.

Yet, there are those few who dare to question and go outside bounds to find new answers, as well as read research to find out how to help!

This is who you need to find. Don’t bother with anyone else, you deserve the best!

I had Covid in Europe at the end of 2019, and have had several trials of flare ups with my health since this time- one after moving, then got better after a year, to then trying to exercise and diet more which caused the worst crash ever!!

I finally took Paxlovid after my son brought home Covid again this last August. I felt better with Paxlovid! Like the best I felt all year!

I had hope for the first time in a looong time. My swelling decreased, my gut started to move again, my legs no longer felt weak, my mind came back!

I noticed it after taking 2- 3 days of Paxlovid. I could feel when the medicine kicked in, my energy boosted 1-2 hours after taking it.

I started to do research and found many articles on how Paxlovid rebound can be from poor viral clearance. And asked for more Paxlovid. I found a doctor who I sent all of my research to who finally agreed to help me while I waited to get into a long COVID specialist (6 months).

Here are ways to work around not having someone available to prescribe for you… use Amazon pharmacy and let them know you have covid. You can also use other online doctors and let them know you have covid. Omit telling them you have long covid, let them assume it’s acute. Also use different pharmacies to pick up from otherwise the pharmacist will not give it to you beyond 5.
My CYA: this is NOT medical advice merely my opinion of the things I did to get paxlovid since the system is broken and the only way I found help before I found my doctor.

It’s been tough getting paxlovid, lots of red tape around it as it hasn’t been approved for anything beyond acute covid for 5 days. But there’s been no confirmed research for long covid or long term safety data. For me, I’m willing to be an experiment because it works! I found taking a half dose of the nirmatrelvir each time has been a therapeutic dose for me and my symptoms. I get my labs tested every month or so and things are good 👍.

Maybe this is helpful?

Also, another really important component of healing is to NOT NOT NOT exercise! I know I know as a physical therapist I’m supposed to champion exercise as good for all health conditions. But for long COVID this is absolutely not true. I’ve been learning the hard way.

I’m realizing that although Paxlovid helps me and gives me the ability to increase my activity, it’s not a cure all. I have to do my part which is to let my body rest in order to heal.

For people with long COVID, our muscles and tissues are damaged by exercise and activity causing crashes and these need to be avoided at all costs. Learning to pace to AVOID any type of crash is the key to healing.

There are studies out there demonstrating this.

One last thing, you live in Washington, there’s Centers for Complex Diseases there that are forerunners for long COVID and CFS, HIV, etc. it’s a long waiting period but might be another option for you. As well as Mayo Clinics.

Please look on psychology today for a therapist to be your supporter in the meantime as well. Many have sliding scales.

My father committed suicide because of poor medical care for his disease, he felt hopeless and like no one was there too. Now I know how he felt. But so many people were there for him and loved him dearly. He has left big holes in many people’s lives and I know yours will as well. There is hope for treatment! It’s right around the corner. There’s hope for assistance too.

I know it’s hard trying to get assistance when the stupid doctors won’t fill out that you have long covid and need it. Meanwhile you have to wait 6 months!

I hope some of this helped?

Big Hugs of support! 🤗🤗🤗

Jump to this post

Your story is so similar to mine.I basically went into a permanent fight or flight because covid attacked my central nervous system and everything really.I could not eat,swallow,go to the bathroom,sleep.It was like I was a human vegetable.I was very healthy and exercised all the time and now I am basically disabled.I know my body so well and knew there was something right away when I had a reaction and all of a sudden a stiff neck and could not swallow.I think covid attacked my spine which led to a ton of other issues.I just think it is so crazy that conventional tests can't pick up on all of the symptoms.Somehow it hides.

repl | @repl | May 20 9:01pm

In reply to @j77 "Your story is so similar to mine.I basically went into a permanent fight or flight because..." + (show)

It’s hard to not be validated when you know something is going on with your body!

I think it’s hard being the forerunners for long covid as doctors don’t know what tests to do to accurately assess/diagnose. And even when they do, they are having to make things up as they go since it’s so new!

They are finding that reactivation of normally dormant illnesses are causing CNS to be attacked, etc. the autonomic nervous system gets altered and attacked causing ALL kinds of symptoms and issues.

I definitely recommend finding a chronic disease specialist who specializes in chronic fatigue syndromes and the like. They should be someone who will be testing for underlying deactivations of Lymes, Bartonella, EBV, CMV, chickenpox, etc. AND bacterial infections

Big Hugs to you going through this. It’s hard. I’m writing this on the couch lol.

some days it feels like there’s no end in sight. Then there are days where hope reigns supreme and I have 3 days of glimpsing normal…
I try to hold onto that if I have 3 days of better then it could happen even more. I take one day at a time and try to cheer for the good days, and hug myself for the down ones.

I do believe there are answers and we will find them soon 🙏🏻❤️

j77 | @j77 | May 20 10:05pm

In reply to @repl "It’s hard to not be validated when you know something is going on with your body!..." + (show)

Thankyou so much!It is hard.I think if the Doctors knew how to help they would.My symptoms are just so bizarre.At the very beginning of my illness I had the ER Doctor check for Epstein Barr titters and sure enough they were sky high.I knew that had to be reactivated because before I was diagnosed with Hashimito's that is all one of the Best Doctors at Hopkins could find.Elevated Epstein Bar titters.I think one of the reasons I got hit so hard is because I had years of severe periods and was anemic, worked in healthcare during the pandemic,already had an autoimmune disease and was going through perimenopause.I don't even think I would have had a chance to fight the virus.Even though I was still pretty healthy I know my gut was not good because of the anemia,stress,etc.I really think that covid is just hanging out in my body now because I basically feel like I an being poisoned everyday.I am going to try to find a chronic fatigue specialist .I just don't really think anyone at Hopkins will be able to help.I need someone that looks outside the box.I have heard a few specialists mention to me to get another vaccine to see if that turns things around.I have lost sensation in the trunk of my body which I know had to have come on from covid.I just dont know if another vaccine could help that or not.I hope you are 100 percent soon.I am praying for you and others that are going through this nightmare.

repl | @repl | May 21 11:57am

In reply to @j77 "Thankyou so much!It is hard.I think if the Doctors knew how to help they would.My symptoms..." + (show)

Correction to my post I meant to say RE activation not deactivation. But I think you knew that 😉

Gosh, that’s a lot you’re going through with the Hashimoto’s and anemia underlying things makes it all a lot harder!

I felt like the COVID virus was just hanging out too - wreaking havoc on my body. But my ID doc says they haven’t found whole viral particles in the body so they are more prone to think reactivation of things like EBV are causing long covid.

Did your doc give you antivirals for your elevated EBV? My doc is trying to get me on Valacyclovir for mine at 3g/day. I also had elevated VZV, basically elevated herpes viruses. I’m trying to titrate up as I’m super sensitive to meds and antivirals are pretty hard on my gut/body.

She mentioned that the main treatment for LC is to treat these reactivation infections. I also took Rifaximin which helped a lot! Not just for my gut but other symptoms of hives, heart palpitations, weakness… but it only helped for about 3 weeks now back to the drawing board.

I do think it’s a clue though! I think beyond my EBV, VZV reactivating I probably have bacterial infections too causing my poor body to have to fight so many things at once!

The times I feel better are when I’ve taken something that targets certain infections. But with the gut bacteria it just grows back after a few weeks. So makes sense I feel worse again. I’m going to see my ID doc this week and see if I can do a cycle of Rifaximin per a randomized control trial I read that cycled 7days of Rifaximin at 550mg tid every 4 weeks x 3 months. The findings showed improved symptoms that lasted a year +, improved beneficial flora and decreased bad flora like c.diff. I feel that’s promising.

I like my doc, she thinks outside the box. And you’re right! You definitely NEED one of those! I’d recommend google searching for docs that treat Lyme’s disease, Bartonella and reactivation of EBV. Before finding my ID doc, I spent months researching and trying to find someone!

My doc only sees pts in California so I’m thinking if you’re seeing docs at Hopkins, then you’re not in California. But here’s a list of docs you could possibly see via telehealth:
Dr. Todd Madeira, ND; https://drmyhill.co.uk/wiki/Valacyclovir_in_the_treatment_of_post_viral_fatigue_syndrome; Dr. Marin Lerner is the forerunner for treatment protocol for CFS, post viral conditions.

Maybe these are helpful in your search?

Big Hugs 🤗

j77 | @j77 | May 21 6:23pm

That sounds right!It is just reactivating EBV.My primary did give me Antivirals at the very beginning of my illness,but I stopped because I have a sensitive stomach too.I am going to have to try to figure out a way I can take them so I can tolerate them.My intestines are completely destroyed because of the rounds of antibiotics they gave me at the beginning when they were trying to figure out what was wrong.I can't even take antibiotics anymore.When I got sick 13 years ago before I was diagnosed with Hashimito's I took synthroid 50 and an antiviral and was better in about a month.I definitely have the walking dead/chronic fatigue/GI problems I had years ago,but this is on a whole different level.Before I was diagnosed with Hashimito's I could at least a normal life.Even though I did not feel well I worked and went out.I am pretty much bedbound with this.I will ask my Doctor about the Rifaximin.I would be so happy to heal my gut.I also have heart palpitations.They are so bad at night.As soon as I am in a deep sleep I wake up from them.I am sure my gut is filled with parasites,bacteria,fungus full force.I remember years ago my holistic doctor gave me a liver cleanse and I felt like a new person afterwards.I think it got rid of 30 years of buildup of toxins.I would do it now,but I am so weak I would probably end up in the ER.I definitely need to find a Doctor that knows something about EBV,Lymes,etc.I was born in California and lived there as a child,but I wish I lived there now.It seems like everyone that is getting better lives in California.I know there are alot of Doctors there that look at the whole picture.I am in Maryland and we do have NIH and Hopkins,but I just don't think the scientists and Doctors will understand how to help or what to look for like a Integrative Medical Doctor.I feel like they also see really unusual cases because people go to them when they can't get help from conventional Doctors.I am going to meet with a Team of Neuromuscular Doctors.I get nervous of the possibility of ALS because of the muscle weakness everywhere and muscle twitching.The weakness in my diaphram/sternum and trunk are so bizarre.I also have lack of sensation in the trunk.In my mind the only thing that could cause that would be Covid or ALS.If it is ALS it was definitely triggered because I never had any issues besides anemia from heavy periods. The two Neurologists I met with told me no,but I saw there has been quite a few cases of ALS coming on after Covid and it can take years to diagnose.Thankyou so much for all of the Great Advice and the list of Doctors I could see telehealth.I just keep on praying for all of us!I hope time and some of these treatments will give us the strength to heal completely or at least live a somewhat normal life.

earlylonghauler | @earlylonghauler | May 22 9:59am

Seekingsupport - I hope you are finding help. Parts of your post are things I’ve gone through, in particular the 50 pound weight loss. I lost 50 lbs over 2 years from lack of appetite, and I too felt like I was dying. Gaslighting at all levels. My doctor congratulated me. I had to insist: you don’t understand - I have no appetite and simply don’t want to eat - at all. At my lowest weight I had a seizure and was diagnosed with Epilepsy. The Epilepsy diagnosis explains the intermittent memory issues and amnesia I’ve had over the past few years since Covid. Good luck with your diagnoses and treatments.

jeindc | @jeindc | May 23 11:44am

In reply to @earlylonghauler "Seekingsupport - I hope you are finding help. Parts of your post are things I’ve gone..." + (show)

The symptoms and reactions from our bodies are so varied and even specialists in, by any name, long COVID, don't seem to know what to do.

My heart to goes to you, @earlylonghauler, because we all understand.

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