Finally: Diagnosis. Oddly: symptoms have come in stages. Others?

To jeindc —

Thank you for the link to the interview with Dr. Iwasaki on the AMA channel. She is a lead researcher on LC, and she speaks concisely and articulately. In this interview Dr. Iwasaki explains where we are at today with LC research, and what we need to do next.

This interview left me feeling optimistic: LC research is making progress!

— friedrich

Since LC I've had periods of one or more canker sores in my mouth all the time and while it's not a rash I've found a product called Propolis that limits the severity and duration of them. My symptoms come and go also - right now I'm struggling to follow conversations and have muscle pain. Sitting at home is bad for my mental health so I smile and nod a lot when with people! My heart goes out to you

I'm signed up for a short LC research study; nice thing about Kaiser Perm is they have all my health records. I'm 70 and caught covid from a fellow cyclist, March of 2023. I was vaccinated 6 mo before but it was a super spreader, and I have autoimmune diseases. I was sick with usual symptoms, then felt OK other than PEM. I went back to biking but far fewer miles with naps. Chest pains started a month later, along with high BP and hard pounding; I had a stress test that was OK, but with symptoms the cardiologist said minimal exercise until my long covid was gone. The LC or associated stress caused my collagenous colitis to flare. At 8 months the PEM and heart problems calmed down (no damage), but my ophthalmologist found drusen in my eyes so I now have dry AMD, and at 16 mo diagnosed with stage 3a chronic kidney disease; other than age I have no risk factors for either. My colitis calmed down after a few months on oral budesonide, a designer corticosteroid. At two years, it feels like covid aged me 10 years, but I can still do all the stuff I did before covid, just for 3 hours instead of 8. It is good to keep a journal of one's health and diet, keep exercising and eating healthy, and find things to look forward to every day. I'm setting 70 as my use by date, just so every new day will be softer.

I’m so sorry for everyone suffering with Long Covid. My PT has it & has multiple patients with it.

My loved one has Chronic Fatigue Syndrome (CFS) and has been treated at Stanford’s clinic since 2016. They’ve changed the clinic’s name to add Long COVID to it, since there’s considerable overlap between CFS & Long COVID.

Sure wish there were better & more effective treatments.

Oh @hicopd thanks. For your loved one, we are grateful there is support. CFS is so like long COVID - it strikes people differently. It is to me astounding that with the numbers of us with this - and my guess is there are many more that have not been 'counted' because like many of us here in this group, their doctors told them to go away (but we here are persistent!), there was nothing that could be done - they are not counted.

As you know, any autoimmune illness is awful. Was with a colleague today who had lyme disease and the disruption to their body has been horrific with little to be done other than a diet change and trying different meds.

I'd be happy to have even something to put on the very itchy rash!

Thank you for empathy.

Joan

Yes, it’s very frustrating because people are always saying “you look great,” as if you’re supposed to look awful and be ugly and dumb because you have a chronic invisible disease. It’s very frustrating. So many providers give up because there aren’t many treatments and the ones that exist aren’t that helpful. 😜😝🥵😰

Review Again, I'm 70 now. A retired scientist. COVID March 2020. Raynauds Diagnosis March 2021. Severe leg neuropathy March 2021. Neuropathy mostly fixed within two months by a strict Gluten free diet which continues today. Leg strength regained over 6 months from 1500 mg l-proline a day, the active AA in collagan. I can't use collagen, it makes me nauseous. 12 severe skin infections from simple bug bites or cat scratches which required Doxycycline. Radical diet change did not correct this. Added one ounce of ground pumpkin seeds, Oct 2024. This appears to have corrected the infection issue. Note high potassium and phosphorus content for those with CKD. The "peeling heels" YES YES, i asked my PCP in 2020 he said you are getting older. Use a moisturizer. Tried over a dozen NONE worked, however, the proline appeared to fix this and my heals were better after taking the proline for six months. An interesting change. I have had verrcusa warts on my hands since college in 1976 and have gone to the dermatolosist every year to freeze them off. GUESS WHAT? They are all gone now. This happened in 2024. Was this due to a realignment of my gut microbiome. two meals a day of organic rolled eats, blueberries, and Vega protein + greens and the elimination of gluten, red meat and ultraprocessed foods? or did the spike proteins from COVID attack the HPV! I have NO FREAKIN idea.

Can you please let me know which Kaiser is doing the research?
Kaiser Northern California MDs have not accepted that I am wrestling with Long Covid. Thanks for any information.

It is through KP Colorado, but a specific doctor is doing the research and has a limit of 300 people. If I glean info from the zooms this and next month, I will share it with the covid group here. My LC may have been easier for doctors to accept because the cardiovascular symptoms were blatant. There are a number of peer-reviewed (aka boring) medical papers on covid and LC in ResearchGate. Research is a slow process. LC is a difficult invisible disease and I hope you have a good support network. Pretty much we have to change our lives, how we exercise, diets, and manage the emotional and physical tolls of the disease.

I have found in the three years I have had LC, I have run the gambit of symptoms of many other autoimmune diseases. I have hear others say this as well. Thank you for posting the article. Hang in there.