Long COVID exists for 5+ years: Share what has or not worked for you

@mspaminreno Because I have tried so many different interventions, all overlapping, it is impossible to say with certainty which helped and which were a waste of money. One product I do swear by is a probiotic, VSL#3 (Google it for website and ordering). I've had gut issues all my life (IBS) and a gastroenterologist many years ago turned me onto VSL#3. There is enough research now into LC to suggest that a healthy gut is crucial for immune response. There are a zillion probiotics out there but this one is the gold standard. You might consider this, especially if you LC symptoms include GI issues... We are all guinea pigs when it comes to LC. And, sadly, because there are no science recognized, tested, and approved treatments there are many individuals and businesses that seek to profit from the vacuum. Some are well intentioned, others simply out to make a buck. Anyway, don't give up. Best to everyone!

@greenshade

We have very similar symptoms! It struck me that you said you had pain from your hips down. That's been the case for me, but I kind of had that before I was vaccinated and before COVID hit. It definitely increased it to the point that I needed a hip replacement. It didn't help at all. It set me back because then I got full-blown chronic fatigue. Took several years to get a diagnosis. I had to go to Mayo.

I have a sort of plan but it has taken quite a few months to put it all together because I had so many other issues to correct before I could proceed.

Right now, I am about a month in on low-dose naltrexone. It has helped with brain fog and giving me a little window of energy during the day. I found out within the last couple of weeks that I have a gene mutation that affected a medication I am on, and I am tapering off that.

At Mayo, I also found out that an electrical issue with my heart called left bundle branch block popped up after I was vaccinated. My doctor had put me on a medication for that, identifying that my symptoms were due to anxiety. He also told me that I must have had several heart attacks. I certainly had not had that and I had to switch doctors midstream.(Gah.) It turned out that I should never have been on that medication because of the left bundle branch block. That took 12 weeks to taper off from. I call it the 52 pickup game.

There's a little light at the end of the tunnel. I've had a few good days here and there where I have been upright and able to function.

Before I went to Mayo, I was flat on my back, could not leave the house except for doctor appointments, and could barely shower I was so weak.

They identified two types of dysautonomia that I have been able to manage without medication. I am getting my sleep straightened out finally through them.

I wish that I could have them for my regular doctors because medical care has been terrible where I live, but Mayo is only consultative.

@drbf You've been through the works! The thing about pain from my hips down has an interesting history. In 1989 I was in India for a month and contracted something on my very first day (stupidly drank a lime soda with ice cubes!). I had the usual vomiting and diarrhea but also a very high fever. I was traveling alone and was in a hotel that if I had died in they may have noticed a week or two later! Anyway, after several days I finally began to get out and try and be a tourist but I began having terrible pain in my legs. It was an odd pain as it would sort of travel about and wasn't fixed at any one place. This continued through my time there and throughout the rest of the trip (to Singapore and Bangkok) before returning home to Honolulu. I saw several doctors about the lower extremity pain and was tested to see if I might have had malaria or one of several other tropical diseases but all the tests were negative. Finally, a rheumatologist theorized that any viral infection I would have would result in the shedding of antibodies and that they for some odd reason were accumulating in the periosteum of my lower extremities and causing inflamation and the resulting pain. Ever since then (1989) whenever I have a cold or flu or any viral infection I have this pain. Since I have had LC, this pain is nearly always present to some degree, which makes me believe the theory that LC is residual reservoirs of active virus that last beyond the acute infection. That's my theory! As for the care and treatment available for LC patients, I think the health care industry has really dropped the ball. There are millions of us and there will be more each and every season. The problem isn't going to go away. It is only going to become more profound. If I could listen in on discussions of health care CEOs I imagine I would hear, "What are the long term consequences of huge numbers of LC patients on the system and how the hell are we going to afford this?" It all, sadly, comes down to money. As a note, I was on low-dose naltrexone for some months and it did give me a bit of an energy boost but my doctor would not continue it, saying it was not meant to be a forever treatment. I've had no heart issues that I am aware of. At the onset the virus wiped out the hearing in my right ear (now ware an aide) and for nearly a year I had horrific episodes of vertigo. Through PT that was eventually controlled but I still have balance issues and have to be careful not to turn too quickly or I may fall. My worst continuing symptom is fatigue. I may have a week or even a few of feeling pretty good but the fatigue always rebounds and may set me back for days or even weeks. But I am lucky not to have some of the very disabling symptoms that many people describe. And lucky that I retired before acquiring LC. I cannot imagine trying to work through it. Well, long-winded here! Best wishes to you and your continued improvement.

@greenshade
Thank you so much for this recommendation. I'll check it out.

I find it very disheartening that the medical profession seems so clueless and we keep going on and on with all these symptoms. I have been complaining for a few years about weakness, loss of balance, loss of stamina. I feel like they think I am too old (83) to worry about it, but before covid I was very active. Now I am using a walker. Should I be depressed? Hell yes! I can't even walk to the mailbox.

Like others, I keep getting sent from one specialist to another and the copays are adding up and my hope is going down.