Long Haul Covid Devastation

Posted by williamkelly3370 @williamkelly3370, Jun 9, 2023

Got mild covid in 12/20/20. I'm now worse than ever, 2 1/2 years later. I've been very active all my l'm 69, I can hardly walk 200 ft, and have to lay down for a few hours. I have severe, fatigue, anxiety, depression, taste & smell OK, No apatite and live alone. Wife of 38 yrs. passed in the beginning of this and my doctor says "I just have to get over that!"
My live is gone. I hope and pray they will persist with research for this but, it doesn't look good.
Sorry for my babbling,
Bill.

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

@elizabethjoy

Guys, there's a FB group with a doctor on it from Texas & over 5,000 people now (or more by now) that has been VERY helpful & educational. They post LOTS of articles & helpful info. His name is Dr. Groysman, group is called Long COVID Treatments & Success Stories.

Jump to this post

P.s. he also does telehealth visits for folks any where if you can't find a doc in your area.

REPLY

I have been very fortunate with my care . My pcp referred me to a doctor that is treating several LC patients. Every symptom I have heard I have had . I am now on a massive dose once a week for 8 weeks of vitamin D I had been stripped of it by Covid and a specialized treatment of vitamin B and folate . My cortisol was extremely low and is now recovering. I just want to see lab results without all the abnormal red warnings and we are working on it . Very cognizant of my weaknesses and stop and lie down myriad times a day!!!My joint pain improved with tumeric and magnesium. I never took supplements before and never had abnormal on any lab results before and went a mile a minute all the time . I had not had a cold for 12 years yet Covid has floored me !! I will never take a good feeling day for granted again !!!

REPLY
@jrg200911

I haven’t begun taking it yet, but my Long COVID Recovery Clinic physician has just prescribed Low Dose (LDN) 1-3mg/day to help with my brain fog, pain, and fatigue. It is proving effective in the limited studies and trials that have been done. You may want to ask your doctor about it.
https://www.peoplespharmacy.com/articles/should-doctors-consider-low-dose-naltrexone-for-long-covid

Jump to this post

Hello. I was put on LDN several months ago. Started at 1 mg, which I didn't notice anything different after about a week. Bumped it up to 2 mg and my brain fog has vastly gone away (it improved gradually, other than when I'm tired, and then word finding and processing tasks is more difficult, and likely always will be. I didn't notice the change, but after about a month, I realized things were easier and obviously it was the LDN working! I was skeptical too since it's a strange "off label" use, but it has worked wonders for me! I say it has given me my life back. My energy level is probably better now on LDN than it has been in decades! I take it at night, as directed by my physician. (Apparently it can make you tired. It gives me a headache if I stay awake longer than 30 minutes after taking it.) I understand being hesitant to try another medication, but would highly encourage you to give it a shot. It really can't be any worse than the Long Covid symptoms, so you've nothing to lose and everything to gain. Go for it! Good luck in your recovery.

REPLY
@shannoncorey

Hello. I was put on LDN several months ago. Started at 1 mg, which I didn't notice anything different after about a week. Bumped it up to 2 mg and my brain fog has vastly gone away (it improved gradually, other than when I'm tired, and then word finding and processing tasks is more difficult, and likely always will be. I didn't notice the change, but after about a month, I realized things were easier and obviously it was the LDN working! I was skeptical too since it's a strange "off label" use, but it has worked wonders for me! I say it has given me my life back. My energy level is probably better now on LDN than it has been in decades! I take it at night, as directed by my physician. (Apparently it can make you tired. It gives me a headache if I stay awake longer than 30 minutes after taking it.) I understand being hesitant to try another medication, but would highly encourage you to give it a shot. It really can't be any worse than the Long Covid symptoms, so you've nothing to lose and everything to gain. Go for it! Good luck in your recovery.

Jump to this post

That is wonderful feedback and encouragement. Thank you!
I picked up my Rx of LDN today.

Instructions for first month: >1mg/day for week 1; >2mg/day for week 2; >3mg/day week 3; >4mg/day week 4. No more than 4mg/day. Scheduled for a follow-up in a month to assess and adjust.

Do you understand this to be a temporary treatment for long term/permanent improvement or an ongoing treatment to maintain improvement?

I pray for the positive results you've experienced. I will try to remember to update here.

REPLY
@jrg200911

That is wonderful feedback and encouragement. Thank you!
I picked up my Rx of LDN today.

Instructions for first month: >1mg/day for week 1; >2mg/day for week 2; >3mg/day week 3; >4mg/day week 4. No more than 4mg/day. Scheduled for a follow-up in a month to assess and adjust.

Do you understand this to be a temporary treatment for long term/permanent improvement or an ongoing treatment to maintain improvement?

I pray for the positive results you've experienced. I will try to remember to update here.

Jump to this post

I believe it was intended to be short term (less than 6 months) to get rid of the fatigue caused from LC, however, I feel so much better on it, that I'm fearful to stop taking it! I communicated this with my covid Dr. and he said that it is something that would be safe to stay on long term, as it is used for treating chronic fatigue as well.
There's a correction to the dosage I'm taking from my original reply. I started at 1.5 mg and was increased to taking 2 of the 1.5 mg daily (total of 3/day). My doctor said the lowest dose that I get relief from symptoms is best. So if you get relief at a certain dose, it's interesting that your doctor has you increasing to a total of 4 mg.
I pray you get positive results as well. LC is life altering in so many ways. Hoping by now you are maybe on your way to big improvements.

REPLY

Think you so much, will check with my Dr. tomorrow about LDN
I will try any thing. 2.5 years in now.

REPLY

I had success with restricted diet (Leo Galland website has a word document at the top and a diet for treating MASC; similar to a heavy plant diet, and similar to my ALCAT results which said no dairy no grains, but Gallands has further restrictions. I started feeling better off dairy and gluten and that may have been the bulk of the relief and the rest is fine tuning (eat berries greens and meats with seeds and coconut oil with egg scrambles with meat greens onions was the shorthand of what I can eat).
I am also on LDN but am a newbie to it. Lots of supplements D, Bs just to echo other commenters, and antihistamines (claritin, astepro and Flonase to treat environmental allergies which helped me recover a lot too).

REPLY
Please sign in or register to post a reply.