Article about Long COVID that has good information

I am proud of you for your perseverance. You have a greater impairment than I , and you inspire me. Thankyou for this gift. Hugs&prayers for your recovery.

Hi @jeindc. Thank you beyond words for finding and sharing this spot on article. Literally tearing up and no doubt it will help so many in so many ways!🌈

Just keep looking for that "right " doc...I finally found someone who works with me. She called the long covid doctor in town who practice is full and got a long list of ideas. Low Dose Naltrexone was a life changer for me. Brought back about 50% of my energy. I can shower and still get other things done the same day. I can walk about 2/3 of a mile in the morning when weather allows (still very sensitive to humidity which makes me quite short of breath), work on the computer, eat lunch and crash about 1 pm. Get up at 430pm, cook dinner and crash again about 7 pm. This is much better than the first couple of years being basically bedbound!

@vostie
I see a long Covid doctor at Ohio State, who has been doing research and treating folks since this started. The most emphatic recommendation he made to me was to pace myself. He said that pushing too hard and then crashing comes at a greater cost than just having to rest and recover, but that it would set back my recovery. He explained something about mitochondria, but I have to admit I was too tired at that point to follow. My Long Covid physical therapist says it’s like a loan shark when you borrow energy – it comes at a very, very high interest rate. I know it’s not always easy to pace, but it’s easier when you know that slowing down for now will help you gain energy in the future. BTW - I am barely 2 weeks into the specialized physical therapy. After another couple weeks, I’ll post the protocol and my experience with it. So far, it’s something you can do at no cost at home.

The only really good help I've found is at longcoviddoctor.com. Dr. Tim Robinson was a private doctor for 30 years in England; then he joined the National Health Service, and devotes his time to trying help those of us with long COVID. For each symptom, he has 2 parts: Part 1 explains what happened to us. Part 2 explains Management and Treatment of the symptom. He agrees that there is as yet no treatment, but he shows us what we can do to feel better. And he tells us what medicines some of his patients find helpful. Anney

@debbiedsf - envious that you have a doctor and system at The OSU that is both following, researching and guiding. Tho' I'm sure many of this know this from experience, when a doctor or physical therapist (really? one devoted to PT for Long COVID patients??) is there to help you to say "my doctor and PT recommends..." so that you have permission to slow down, it carries more weight with others, so I've experienced, v. saying "I just can't do more".

I do know to plan ahead for days with multiple Zoom or like meetings for the day and the days before and after. I carefully schedule time around days I have to go out for doc appts., etc.

Your input is so appreciated as will be the PT you've learned. Would you too with that explain more about your symptoms and if the PT is designed for your symptoms and differs for others in the programs who have differing symptoms or abilities?

Thanks.
JE

Oh @bettyjackson, if I weren't curious about it and reading more and thinking "surely someone will have found research I've not and have at least an idea" or if I weren't so incredibly stubborn, I would give up. Too many days, esp. at night, when I'm especially tired and my body parts impacted "hit" me, I do yell "why am I bothering???" Too, I think for each of us a desire to help others by learning more is very much more of it. I do NOT expect to even find something to treat the symptoms. I know I need to get my hearing tested again - it seems that more has been lost in my left ear and I'm unsure if "tuning" my left hearing aid will help. I so appreciate your words and am grateful to inspire you. This page is one of the few places at which I feel I can be myself about the symptoms. My late friend (not gone bec of COVID), Mary, and I would call the body complaints "Organ Recitals" and try to laugh. Too few want to hear them.

Do what you can. Keep asking questions. I think if we are annoying enough we will be heard.

Prayers and hugs right back to you.
JE

@vostie great to read that it helped you. Others have mentioned. All the docs I see have said "no" to Naltrexone because of other meds I'm on. One the extensive blood draw this week is read and reviewed by my newest ID doc, I'm hopeful something will be seen that gives greater clues. After reading about hormonal imbalance from long COVID, and because I'm long past menopause, the ID doc is looking for that as well as a "trigger" to my past non-Hodgkin lymphoma to see if anything has triggered that to return. Too many docs diagnosed one _aspect_ of the symptoms and made a decision to dismiss me based on what they knew and treatment for ONE thing. I hope the new doc is as curious as our first meeting indicated.
JE

@law59 how I understand. I'm about to post another about mental health and the therapists who have not kept up with long COVID and so finding help is so tough. When I read that "it's not just me", I know it's not. The more WE share and ask someone will "get there". Sadly the research in the US is not well-funded if funded at all. I'm seeing far more done in India than here. The "Long COVID google alert" (google dot com/alerts and add it) is how I am reading more.

To us! To tears when we are comforted and when we are frustrated.
JE

@jeindc Best of luck JE...I finally found a doc that cares and it made a difference!