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@oldhiker73

I last posted on this forum March 6th and have been waiting a while to post an update on my wife's journey with Long Covid. We were fortunate to find a family doctor locally (our third Dr) that was aware of long covid and had treated some patients and had some success. I will list below the "protocol" he has had my wife follow. Please note, I don't believe there is any "one" answer to long covid, what I am going to cover has helped my wife so it might be something to discuss with your Dr.
1. Saw Dr on 3/26/24 - since our last 7 day trial with Prednisone had indicated some success that was the first thing we asked about. We found out that he had a basic protocol and his first step was to place her on a 27 day predisone taper with the following schedule; 10mg 3 tablets a day for 7 days, 2 tablets a day for 7 days, 1 tablet a day for 7 days and 1/2 a tablet a day for 7 days.
Notes; The diagnosis he actually used was "Postviral fatigue syndrome" which could cover several of the virus's. My wife had never had any side effects from prednisone but did have a few during this treatement schedule and for a couple of weeks afterward as it worked it's way out of her system.
Results; On our next visit with the Dr. we were able to report that the crushing fatigue, PEMS attacks and respitory symptoms were mostly gone. Issues still remaining that had been "minor" before were now at the top of our list. These three items were: Hot/cold flashes (my terminology), brain fog and GI issues.
Next Steps; Dr. prescribed probiotic for GI issues, a prescription supplement called CerefolinNAC for the brain fog and a topical hormone replacement (contained blended Estradiol and Estriol to be applied once in morning and once in evening.
Results; on our next visit we reported the following; GI issues cleared up, hot/cold flashes still occuring, seem to be most prevalent early AM (just prior to waking or shortly thereafter) but not as intense, brain fog still present but she feels it is "better".
Next Steps; Keep up current treatments and add a prescription for topical progesterone to be applied one time at night.

So, is she responding to treatment? The answer is yes with the following data to show improvement. Several months ago we instituted a "rating" system for each day (very simple) of "bad", "medium", "good" that we log every day. Since January the number of "bad" days we logged were as follows;
Jan = 19
Feb = 20
Mar = 25 (started with new Dr. on the 26th)
Apr = 18
May = 8 (note that in the last 20 days of May we have only logged 3 bad days)

Brain fog comes and goes and seems to correlate to stress levels to some degree, hot/cold spells seem to be reducing and the Dr. is hopeful that the new treatment may help her weather the overnight time period and reduce the early AM spells. She is still "weak" but that is to be expected, for almost 2 years she hasn't been able to get much exercise so it will take a while to build back up. We have discussed that at our ages (middle 70's) she may never get completely back to where she was but the improvement she is seeing/feeling has her mood rising significantly.

So, to repeat myself; after reading everyone's stories on this blog site, I don't think there is "one" solution for long covid but we seem to have found one that is working for my wife. We wanted to post this so other folks could ask there Dr. about using this (or some variation) of this type of treatment.

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Replies to "I last posted on this forum March 6th and have been waiting a while to post..."

That is Amazing!One of my symptoms was not able to swallow because my muscles in my throat were attacked along with all my other muscles Steroids gave me the ability to eat again.My primary was the one that actually thought to put me on them out of all the specialists I went to.He only had me on a short dosage for a short amount of time though.I am in bad shape so I wonder if he would be willing to put me on them again.Does your wife have heart palpitations?I was reading on another site that the progesterone helped one girl with heart palpitations and weakness.

Very, very impressive and heartening! So glad you shared all this.

So happy for your wife and she is lucky to have you to take care of her. I also believe that treating Covid symptoms is going to be different for every individual. I lost my taste/smell in December of 2022, but after reading a lot of peoples posts on this site, I feel that I am blessed to just have this, but I have to say, I do miss tasting and smelling!