5 yrs post covid. Is there any help out there?

Kevin,
I am so sorry that you're going through this. I also had covid in 2020. I came down with it March 7th just prior to everything shutting down. I developed long covid and had many of the symptoms that you have been experiencing.
It was difficult to find doctors who understood long covid or in some cases even acknowledged it. I kept searching until I did.
I think what I found hardest about managing long covid has been that there is such a wide variety of symptoms going on simultaneously. On the advice of a friend of mine, I wrote down a list of my symptoms, triaged them in level of severity and which most impacted my quality of life, and then addressed them one by one. This meant a cardiologist, a sleep specialist, an allergist immunologist, a speech therapist, and a therapist.
It felt extremely difficult trying to manage all of that but it was worth it because in the last year I have begun to feel better again. Not all of my symptoms have disappeared, such as brain fog, but I got good tools from the speech therapist for managing them and seeing a therapist helped me be able to emotionally and mentally deal with how this is impacted my life.
I also have tried to be diligent about supporting my body's own abilities to heal through balanced nutrition, finding exercise that I could do that didn't exacerbate my symptoms, staying hydrated etc.
I also felt found some modalities that were complimentary to the Western medicine protocols I was receiving. Traditional Chinese medicine has been very helpful to me.
If you can find a facility that has a department that specifically works with long covid it can be helpful in coordinating your care.
There is hope, though. My recovery has been incredibly slow, but I was looking back over journals I kept a year and a half ago and realized that I am getting better. I still have certain days when symptoms seem to surge, but overall I am having many more good days than bad.
Wishing you all the best in your recovery.

@alistair4444
Hi
Thanks for the reply to me. I am glad you are getting help. I just retired so now I can make dr. Appts finally. I just had a heart monitor put on today. 7 days 24/7. In the next several weeks I have 5 more test to get done. Mine is all Neurologist related issues. My pulse was in 20s to low 30s right after covid. Last 4.5 yrs around 43. That has a lot to do with my problems. But never had anyone say anything about it. Do you know or heard of Vagis nerve problems. That is what I need help with. Also I have 5 more test they are doing in next 4 weeks on me. Now that I finally went to a Cardiologist.
Beat of luck to.you and all of us out there.
Kevin

This is a helpful discussion for us long haulers, thank you.

Kevin, I also have zero libido, sadly. Has anyone found a remedy for this?

I haven’t found much to help with symptoms, other than duloxetine from the start, which helps with mind clarity and some of the pain.

Keep up the good effort, everyone!

Julie

@jb729
Hello again. I went from before Covid of course I am a male. I was 59. I always enjoyed the sex before covid either with a female or alone. Of all the issues I suffer from this long covid, I would pick my top 3 issues I wish would heal themselves. No order here.
1- Ringing in ears 24/7
2- No sexual desire anymore (heart breaking to me)
3- Brain fog and memory loss and depression.

Best of luck to all of us. I am finally seeing a Cardiologist and have hope. If the ringing don't get fixed so be it. If the memory issues don't repair so be it. But the last item I wish would return before I die is the Big O again. I miss that. Never done drugs, never smoked pot or cigarettes but I really enjoyed the big O.
Pray we all get something healed soon.

Kevin, you made my day - I’m with you 100% and relieved that it’s not just me! Let’s keep on hoping.

@vostie
I am so glad LDN has worked for you. LDN aims at a restart of the immune system. Basically, every night you give your body a "hard boot".
LDN can be helpful for many autoimmune and immune system involved diseases. It takes awhile and you have to go up slowly. I couldn't take it because my system overreacted, but I tried several times because I know it has great potential.

@jb729

Hi Kevin. I'm two years post covid and have many symptoms. I've just started taking Naltrexone. If you google Naltrexone and long covid there should be some information. Griffith University in Australia is doing comprehensive research. Best wishes

@katevanb
Thank you. I will look into that. I finally got bad results. Every time I get a blood test MRI, CT scan, EKG everything is perfect. I finally got in to see a Cardiologist and been doing lots of test. I never thought I would be excited to get a Bad result back. I know weird. But after 5 yrs it was nice to finally have proof. I had a 7 day heart monitor and got results back last night. The person doing the test and replying to my Dr. Basically said I had 3 different issues. Once I hear back from my Dr maybe I will get some information and maybe start some type of trying to get me some help. Will see soon.

@katevanb
Yes Low dose Naltrexone, LDN, is a valuable drug for any autoimmune disease or condition.

For anyone unfamilar with LDN, LDN is basically a "hard boot" of the immune system. It resets the immune system and encourages it to normalize.

I have taken it myself and would have continued LDN, but it caused some anxiety side effects.
I will say that it can be quite dramatic the first few times that you take it. The first time I took it about 3 am it seemed like all the halogen lights in the world went off in my head. That toned down with time. I had to start very low in dose, as most people do and build up to the amount that would hopefully help me.
So this drug may take months to get to the correct dose. Plus, it is a compounded drug so you will work with a doctor's prescription and a compounding pharmacist.

from a google search, asking how it works for long Covid and other autoimmune diseases:
"It is frequently prescribed for Multiple Sclerosis (MS), Crohn’s disease, Hashimoto’s thyroiditis, Rheumatoid Arthritis, and Lupus.
Long COVID Symptoms: Patients often report significant improvements in fatigue, brain fog, chronic pain, and sleep disturbances."

There is lots of research and standard use of LDN now for Long Covid and other autoimmune diseases, here are just a few:
https://mindstreamintegrative.com/blog/low-dose-naltrexone-ldn-for-long-covid-and-other-chronic-conditions-hope-for-lingering-symptoms/
https://www.covidcaregroup.org/blog/low-dose-naltrexone-for-post-covid-inflammation.
https://pmc.ncbi.nlm.nih.gov/articles/PMC12127304/