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

My heart breaks for you. I understand your desperation. Glad you are on the LC waitlist. Stick with that. It will bear fruit. Also, check into Seattle integrative health, long covid specialists... Because if mainstream medicine doesnt help, alternative medicine may be well worth exploring.. The only caveat is that its not covered by insurance- it can be expensive.
hugs

Oh also there is this podcast that I found online, where this group of people (all suffering from LC) share information. One day they had a LC care doctor on there, he stated that once you have Covid, any illness even a common cold can re-emerge symptoms from Covid, even cause new symptoms.
It’s being theorized that there could still be remnants of the virus still in us still reproducing also causing new symptoms or old ones to come back.

Hereis the link to the discussion that @da69 started. Helpful post and comments:

- Long COVID: Accepting my new normal https://connect.mayoclinic.org/discussion/accepting-my-new-normal/

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! 🤗🤗🤗

Yes, getting into a long Covid Clinic does help. You will wait because these doctors are overwhelmed with people like us. I waited months even with a referral from a doctor who could not help me.
I finally got in, and while I have not yet had significant improvement, I do feel heard, and cared for. That has made me feel so much less alone.

My concern for the poster is that each of us gives a list of “to does” to this poor person who is barely surviving.
Taking detailed notes and printing them out and contacting your government representatives?? I seriously doubt seekingsupport is able to do ANY of
that. I know for me just getting to a health appointment gives me an anxiety attack. I have to pace myself, and just plain NOT THINK about a lot of things that trigger my anxiety.

Ok, so what’s MY advise?
Rest, take the best care of yourself that you can.
Eat, even if you are not hungry.
Sleep, whenever you can.
Walk in the fresh air and sunshine whenever you feel strong enough.
Join in conversation here when you feel up to it.
Wait for your June appointment. It seems so far away, but those months will pass.

For most of us this is a LONG HAUL. Don’t give up hope. You do have some help on the horizon. I pray the clinic is a good one, and helpful for you.

Thank you for this post. My symptoms are different from yours, but I have been down the same dead-end roads.

I was only able to obtain the short dose Paxlovid from an online doctor. I’m not sure what you meant about going to different pharmacies to get more.....anyway, I will discuss this further with the doctor I have now. I would like to take it as you describe, and see what happens.

I had Acyclovir from a shingles outbreak, and tried a half dose of that for a few weeks. No help. I read some have had good result from Acyclovir. I am also willing to take some steps on my own to see if I get good results. I’d prefer to be under a doctors care, but as we all know, most of them are behind US on their understanding of LC.

Your post sounds very positive and energetic, so it seems you have something working for you.

I do walk a bit and get out for some fresh air. I am not really exercising and pushing myself.
I think we have existed in a “no pain, no gain” mindset for so long that people are hurting themselves. This is an entirely new animal that nobody has figured out.

Again, thanks for your take on treatments that work.
Good luck to all.

I’m rooting for you and I am here for you. I am experiencing something similar with my own family and the diagnoses of depression due to lack of concrete results. My heart is involved, but the thing that’s bothering most aside from that , the sleep and the neurological signs is the simple act of BREATHING. And yet still I’m told this is somehow in my head.

Please don’t give up . You are not alone and you have done nothing wrong. Please take refuge in these forums and likeminded sufferers

Hope it helps!

Pharmacists have denied Paxlovid past the first dose. So using different ones has helped. Oftentimes they will dispense it twice then deny. So using a different pharmacy has helped but not a long term solution.
Finally having my doctor talk to the pharmacist made it so they’d keep dispensing to me.

Best Wishes!

You are not alone. Many people suffer from post covid. Read about Long Covid-19 details from the Mayo Clinic. I too suffer exhaustion after standing for only 5 minutes. I get headaches every day. I tire easily and cough up thick phylem. Long Covid is debilitating, and it seems doctors don't know what to do with us because this disease is just not understood fully. You sound desperate. Sorry to hear your family thinks you are just depressed. Long Covid is covered under the social security disabilities act. You should apply for this. I don't know how old you are, but if you are a senior, maybe join a senior center. Make some friends. I have been living off frozen dinners, as I am too tired to cook, and I enjoyed cooking before I got COVID-19. The computer helps me keep my mind off being sick. I spend time watching movies, and shopping. I rest all day in my recliner and sleep in it. Exercise is out of the question. I had joined a gym previous to getting COVID-19 to go swimming in a lap pool. The 1 time I went, I was dizzy and the next day I was sick with Covid-19. I hope my letter brings you some comfort as from what I have read there are 600,000 of us suffering Long Covid. I think acceptance that you along with many others have Long Covid. I hope you find something to bring you happiness. Meditation might help relieve your stress level. There are many meditation videos on YouTube. Wishing you good health and a reason to keep living.

YOU ARE NOT ALONE. These problems are widespread in the post Covid community of long hauling. The traditional Ford vs. Chevy version of medical treatment by the U.S. medical/insurance industry is a big part of the problem. I was also losing weight,slowly dying, not knowing what to do , getting a cold shoulder from the Medicare/Insurance/Primary Care Ford vs. Chevy insurance community. My first step was LISTENING To OTHER PEOPLE. I have had numerous health care industry people tell me that huge numbers of people THEY KNOW PERSONALLY, have developed a gluten reaction/allergy since having covid. This web site has also reassured me that I AM NOT CRAZY. I had to seek out the help of others. The problem for most humans is the financial resources to get the help they need. If you can afford it, my first bit of advice would be to pay for the advanced thyroid function bloodwork done from a local Labcorp Lab, or one of the other labs that you can order it from, on your own, without an M.D. ordering it. That test will cost you about $300.00, but it will generate a lot more info than the traditional TSH Ford vs. Chevy med industry lab result. There is a lot more to to the thyroid than the TSH. The TSH can test normal, but there are other functions, T cells, etc. which can be out of range and affecting you in spite of a normal TSH. I found 2 other things out of range that were pointed out by the LabCorp consulting physician. I had enlisted the help of a functional medicine M.D. in addition to my medicare primary insurance M.D. Yes I pay her out of pocket, but she immediately wrote me an additional very slight increase to my thyroid med. She assured me that it was unlikely to put my TSH out of range, and it would absolutely not harm me and could be helpful to my constipation issues developed after covid. She was right about all of that. She also immediately put me on 1000 mg. of magnesium supplements a day. She said she had numerous patients taking twice that, with no side effects. I started that, and it was a HUGE HELP to my constipation issues. She was right again. My primary care M.D. scoffed at the increase in my thyroid, got a little huffy, and assured me he was going to decrease my thyroid prescription if my latest TSH was at or near out of range. There was NO CHANGE in my TSH with the additional thyroid meds, my fuctional medicine M.D. has been amazing and has me back to being more normal than I have felt in about 2 years. I finally HAVE HOPE. In addition the finding from the CYREX array #4 that my Milk Butyrophilin is almost 4X the normal range of 0.0-1.4, and her recommendation to immediately halt the intake of ALL DAIRY PRODUCTS, for 6 weeks, has been as big a help, in the past 2 1/2 weeks, as stopping ALL GLUTEN intake, which I have been trying to do for at least the past 1.5 years. This Milk Butyrophilin reaction, I AM CONVINCED, would HAVE NEVER BEEN known by the traditional med industry, probably not even by the good people at Mayo, who are kind enough to provide this forum. My advice to the Mayo Clinic folks would be to establish a high end, functional, well credentialed FUNCTIONAL MEDICINE GROUP, and get to the forefront of post covid, long haul, care. It can be done. The CYREX lab result food array tests, incorporated into the Mayo Medical care model would be of substantial benefit to ALL INVOLVED with post covid, long haul issues. The cross reactivity to non-celiac gluten disorder is as big a threat to health and well being as eating gluten after a confirmed celiac antibody test. European researchers have already found that the avenins in oatmeal will cause a gluten response in numerous celiac and non celiac gluten disordered patients. The problem with oatmeal is that there are only 2 varieties that have NO AVENINS. If you have a gluten response, YOUR BODY WILL VERY LIKELY REJECT OATMEAL. The Spanish group who have researched this are on the record as telling their gluten reactive patients that THEY MUST AVOID OATMEAL. The average consumer will never know with ironclad assurance that their oatmeal is one of the two "good varieties", or if it is, will it still be cross contaminated with the "bad" avenin varieities. This is just one example of the challenges facing covid, long haul gluten disordered patients.