Has anyone completely gotten over Long Covid? Please post here

Vostie! That’s all such good news. Thanks for being so generous with your exper-ience with LC. Your walks have improved dramatically! WOW! That’s “true grit!” I’ve had most of your symptoms (weak thighs,
fatigue, neuropathy, etc., so I will get out and walk more
now, like you have been doing, despite the fear of overdoing it, then crashing. (A perfect way to describe it, right!” BIG QUESTION - how did you get your doc to give you LDN??? Mine act like they would wind up in jail if they gave it to me. I’ll fly anywhere to find a doc who will shoot me up with it. Could you give me your doc’s name and number? ANOTHER BIG QUESTION Did LDN give you any of the many ugly side effects listed? They worry me. Maybe they affect only few people, or rarely do so. Did your doc address them with you? FINAL BIG Q - what is your antihistamine diet? My legs are quite weak too, so that diet sounds most important. Between weak legs and dizziness, falls become a real danger.
Thanks again, Vostie. You are so helpful. We owe you lots of gratitude and and good wishes. Sincerely, Stuart

Stuart - 1. The first thing is to find some studies on LDN used for Long COVID as LDN is well documented to help with Long COVID. You need these from reputable sources like National Institute of Health, Stanford Health, etc. Here is a compilation done for doctors here in Minnesota - if your doc won't read it, find one who will: https://www.health.state.mn.us/diseases/longcovid/docs/fromfieldldnaltrex.pdf

LDN is being used by all sorts of general and specialized docs across the country for Long COVID, chronic fatigue, crohn's, arthritis pain and more. You will be taking an extremely low dose so your doc should have not concern.

2. Get to know (LDNadminBrian) Brian on the reddit LDN message board. He is tracking the side effects and benefits to people using LDN and has tons of helpful documents to guide you on starting with the medication and how to find your best dose. It is maddening but you have to start at a very tiny dose like .5mg or 1 mg a day and titrate up super slowly...like increasing .5 or 1 mg per month if you are doing well with the side effects. Titrating too fast will exacerbate the side effects in most people! Here is Brians page on reddit - https://www.reddit.com/user/LDNadminFB/

3. My side effects, and those for the majority of people, are mild and tolerable as your body gets used to LDN. When checking "Doctor Google" ensure you are looking at side effects for LDN and not for naltrexone in general. I had no nausea, diarrhea, or dizziness but did have a transient headache which is unusual for me, vivid dreams, and extreme fatigue for the first two weeks starting on a 1 mg dose. The fatigue hit me within an hour of taking the dose and then minimized over about three hours...but was enough to put me to sleep. I also have very vivid dreams in technicolor. If you have extreme side effects at 1 mg, stop LDN for a week or two and try again at .5 mg or even .1 mg. Somewhere you may find a sweet spot like I did where it will help.

4. Get you LDN compounded into a 1 mg liquid at a compounding pharmacy. That will make it much easier for you to increase or decrease the dose to find the right dosage for you. The liquid I get has little to no flavor and comes with measuring devices for dosing.

5. I gave up on regular general practitioners and went to a concierge doctor with several studies in hand. She needed to do her own research, called a colleague whose practice is full of Long COVID patients some of which are using LDN, and prescribed me the LDN. I would advice created a new post here on the Mayo board and ask for doctors that prescribe LDN in your State.

I basically follow the anti inflammatory diet created by Dr Weil with some modifications to allow me to have a slice of bread or a sweet when I know doing it will make me hurt the next day. I gave up nightshade plants including tomato, peppers, eggplant and potatoes. I can have sweet potatoes and cooked tomato in small quantities...and was also able to eat pork and beef after being on the diet for a few weeks. I don't eat the recommended soy foods as it creates too much estrogen for me and gives me hot flashes. Herre is a link - https://www.drweil.com/diet-nutrition/anti-inflammatory-diet-pyramid/dr-weils-anti-inflammatory-diet/

I've suffered from long-COVID since June 2020 = five years and one month. No end in sight...

Please let us know more about your treatment for fatigue- the process as well as the outcome. Good luck!

I also seem to have vaccine injury. I had two of the vaccines and two boosters. The last booster was mRNAModerna in October 2022. I have been sick ever since with most of the very debilitating symptoms. I don’t think I ever had Covid. I can list the symptoms if anyone asks.
I tried almost everything recommended by various sources. My doctor finally gave me Adderall which has helped immensely with energy. I don’t feel normal but I have enough energy to live an almost normal life. I did have a very very bad episode of Post Exertional Malaise that lasted about a week after moving furniture to clean. I was in so much pain that I could not move. I needed crutches to get to the bathroom and just sitting down and trying to get back up made me cry from the pain.
Has anyone else tried Adderall? It is basically amphetamine. It is the only thing that has made a significant difference.
I have taken Nattokinase, Bromelain and Curcumin for periods over the last, almost three years but I am not consistent with it currently. I really got sick of taking so many supplements. I was taking others as well as the NBC mentioned above. I would be interested in hearing from anyone who has tried Adderall. Thanks to all for reading and posting here and thanks to Mayo Clinic for providing this format.

My understanding is that it is the spike protein that is the cause of long covid and vaccine injury. It stays in the system and nothing has been found to kill it.
My doctor recently told me that I was going to have this for the rest of my life and to accept that and try to find a source of joy. He also pointed out that there are others much worse who are in wheelchairs or hospital beds.
There are two relatively unimportant things that frustrate me. Most people don’t know anything about LC or Vaccine Injury and to them you look fine. The other personal difficulty is not being able to keep my house as clean and organized as I am accustomed to. Even with the Adderall I don’t have the energy to clean out the utility room, deep clean the house, etc. sounds trivial but it makes me feel discouraged and depressed. I use the energy from the Adderall to keep up with bills and work several hours a day and then I just want to sit in a chair or lie down.

Your post sounds exactly like me 100%. I could have wrote it that’s how much it mirrors me. I feel horrible saying this but it gave me comfort that I’m not alone and not going crazy. I feel like a failure that my adderall is now the only thing that helps me get through just doing basic paper work or maintaining friendships. I have a good three to fours hours in the morning and then I’m done. My brain fog gets so bad too I can’t even comprehend the basic conversations mid afternoon. I get so winded I can’t talk on the phone for a long period of time plus it spikes my heart rate.

I have had LC for almost a year. Very challenging. I am seeing a Natural Path Dr who has me on a lot of supplements. It does not feel right. Two of the supplements are LDN and ivermectin both of which I cannot take. My body feels terrible on them.
Normally a very active, fatigue dictates my day. I worry that any “extra” exercise or activity will pull from my healing of virus. I honestly not sure the natural supplements are playing a big role in recovery. The virtual visits with Covid clinic focus on lifestyle over medication. I don’t know where to turn for real help.

I actually started a whole thread about the subject a little while back:
https://connect.mayoclinic.org/discussion/im-the-one-who-knocks-lets-talk-amphetamines/
I'm currently about two weeks in to trying Ritalin/methylphenidate, which is actually not an amphetamine per se, but similarly is a stimulant often prescribed for ADHD.
I'm still waiting to see how it proves itself longer term, but it does indeed seem to be helpful for me, since fatigue is my main LC issue.
Many of these doctors with their multifarious theories about the cause of this illness might just be blowing smoke at us; The same thing happened over thirty years ago with CFS.
I believe the only sensible response, until a DEFINITIVE etiology AND consequent treatment is identified, is to TREAT THE SYMPTOM(S)!
As long as you can do that safely and with positive results, I believe that is the logical path to take.
I previously tried nicotine (gum) as well as LDN, but neither was helpful for me.
The Ritalin, thus far, is.