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

@klf58
I'm 84 years of age and 5+ years post-covid. I take *a lot* of supplements; mostly amino acids to help with the mitochrondia/energy connection. And, I can actually feel them working.
Thank you for your mention of the Nicotine Gum. Is there anything more you can tell me about using it? I've seen that mentioned before throught these years but have not tried it.
Regarding Brain Fog. I *just* recently found a product that produced a positive experience for me. It's made by Life Extension and it's called Brain Fog Relief.
And, I read this morning that Brain Fog creates fatigue of all types in our body. (Just thought to throw that out here)
My best to you,
Pam

@tcastigl1 You seem to have experienced many of the same symptoms I'm dealing with; however, I believe yours are more severe. After nearly five years, my main symptom (sort of like background noise) is fatigue. I had cleared most of my symptoms a few years ago and was encouraged by my primary to get the booster for that year. Within days I was set back with all my symptoms and it took months for them to subside and I have never got back to where I was before the booster. At this point I have intermittent fatigue and definitely PEM (countless times), cognative issues, muscle and joint pain from my hips down, neuropathy in my feet, recurrent tendenitis in my fingers and wrists, sleep disturbance, and some mild GI issues that come and go. I have Kaiser Insurance and they have yet to really recognize LC. They treat it symptomatically: I've seen numerous specialists all treating in their particular field of expertice but no one is connecting the dots. They are treating me like I am five or six different bodies. It is terribly frustrating. I live in Northern California and the only two LC Clinics are with the Stanford Medical Center and the UC Davis Medical Center. Both have over year long waits lists just for first visit and they will not see you unless you have been tested positive for COVID professionally, i.e., a home test positive reading will not suffice. And, naturally, both are very expensive. There are millions of us out there and there will continue to be more each and every year but the medical health industry seems not to have accepted this fact or prepared for it. At 77 years old, I likely will not see any great interventions in my lifetime but I am saddened to think of all the younger people suffering from LC and more to come.

@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.

@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!

@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 I believe your theory that LC may activate latent viruses is absolutely on the money. Post-Covid I've had episodes of herpes not experienced in a long time -- and in brand-new sites. Which is why LC manifests so variously. It all depends on your body and your unique history. We can thank crazy Bobby Kennedy for ignoring the millions affected. Until there is a loud, coordinated effort to address this chronic illness, with the appropriate research funding, we and our doctors are going to be flailing about, making the best possible guesses based on the best possible data, which may not be very good at all. Wishing you -- and all of us -- the very best. Hang in there. Use this site to whine and kvetch. We hear you. We get it. Have courage and be gentle with yourself.

@shashig Hey, thank you for your message. It's the sort of thing that helps when nothing else much does. Coincidentally, I had an appoinment with my primary physician today and we had a discussion about the shortcomings of the health care system to adequately deal with LC. He was generally frustrated with the inability to effectively treat my LC symptoms. As for the lack of governmental funding for research, this pandemic reminds me so much of the AIDS pandemic during the 1980s. Reagon was President and it took him six years to even say the word AIDS. If it wasn't for the radical protests of groups like Act Up, with people locking themselves to government and big pharma doors and other very assertive protests, there might never have been the development of the antiviral drugs that now effectively treat HIV patients. But I doubt our current Administration, with a racoon molester for the head of the HHS, will do anything to push research and development into LC. It is such a travesty what is happening to our federal resources across the board, except, of course, the military. It seems always to get funding above and beyond. Sorry for my rant! Best wishes to you. Be well...

@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!