Connect
← Return to Has anyone completely gotten over Long Covid? Please post here
Discussion
Has anyone completely gotten over Long Covid? Please post here
Post-COVID Recovery & COVID-19 | Last Active: Aug 28 10:50pm | Replies (116)Comment receiving replies
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
Replies to "Vostie! That’s all such good news. Thanks for being so generous with your exper-ience with LC...."
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/
You can get LDN through AgelessRx.
Connect
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.