As I've obliquely mentioned here and there, Curlygirl has been having issues since her Covid infection in December.
Until she got sick, she was working full-time, raising 3 kids, and updating a recently purchased home with her s/o.
Yes, she had 2 Covid vaccines without obvious side effects. No, she did not have boosters.
Her s/o was sick at the same time. He had almost no symptoms and recovered entirely within a very few days.
She had mild initial symptoms, with no loss of taste or smell, no cough, no fever. But within a few days, the shortness of breath began with some mild drops in oxygen levels and a lot of chest pain. Dizziness, blood pressure fluctuations, rapid heartbeat, fatigue, increased sleep, head pressure, body pressure, numbness, tingling, and a sensation of muscle heaviness when standing, imbalance all followed. She has been unable to work since this started and has moved in with me. Her kids live with their fathers. She feels like she has lost everything.
Of all of this, the shortness of breath is really the only symptom that has improved.
She has seen pulmonology, cardiology, 2 neurologists (the most useless specialty by far). She has been in the ER no less than 10 times.
Pulmonology gave her some inhalers. They helped and she no longer uses them.
Cardiology diagnosed her with POTS (Postural Orthostatic Hypotension Syndrome). This is autonomic nervous system dysfunction (dysautonomia) common among the post-Covid population. Treatment for this has, to a degree, stabilized the blood pressure and heart rate. The benefit of this is that she can stand up most of the time when she needs to. Missing doses of medication can lead to some severe symptoms for her, so she needs to be pretty religious about this despite the side effects.
She is in contact with a large number of online Covid groups. and has been given tons of conflicting advice.
She has had online contact with a Lyme Literate Doctor (by the way, there is no certification for this, and some of them are quite dangerous. Hers appears to be one of the safer ones), homeopathic providers, naturopathic providers, Functional Medicine providers. She has been told that the Covid reactivated a previously undiagnosed Lyme infection, and that she has reactivated EBV (Epstein/Barr virus).
She has had bloodwork done as ordered by many of these providers, several hundred dollars of which was known in advance to not be covered by insurance.
We checked out a Lyme treatment center near Boston. For $10,000 dollars she can undergo treatment for Chronic Lyme that includes proprietary saltwater foot baths to remove toxins from the body via the feet; time on proprietary vibration platforms with oxygen to improve muscle strength, balance, and to kill the Lyme with increased oxygen. In addition, proprietary glasses frames with blinking lights aimed at the eyes concurrently used with proprietary laser pointers aimed according to an individualized map at various areas of the head. The clients in treatment there all professed great improvement. The chiropractor giving us the tour couldn't give me stats on actual recoveries, nor could she look me in the eye and tell me that she didn't recommend treatment to nearly everybody who showed up, even those with multiple symptoms and totally negative Lyme tests. The frequent use of the word "proprietary" set my teeth on edge.
She has followed protocols, diets to decrease inflammation, to decrease histamine, and diets to avoid "feeding the EBV virus."
What about a Long Covid Center? Or a Covid Recovery Center?
We went to the Long Covid Center in NYC twice. The cardiologist has been wonderful. The rest, not so much.
There are 3 Covid Recovery Centers in NY state. One exclusively deals with pulmonary issues. The other 2 offer post-Covid PT. Boston won't take patients outside of New England. Johns Hopkins takes Maryland, Delaware, and Washington DC. Penn State takes PA patients only. I haven't checked Cleveland, but that's 6 hours away.
Estimates from good studies show that anywhere from 10-50% of post-Covid patients have long term symptoms, almost completely regardless of the severity of the original infection. Vaccination reduces but does not eliminate risk of infection. It also reduces but does not eliminate risk of long-term symptoms.
The US population is over 332 million. Number of infections, 90 million. Let's low-ball that number since quite a few of those are re-infections and say, oh, 60 million. That means that anywhere from 6-30 million people have some form of Long-Covid issues. Of those, about a third are symptomatic enough to struggle to work, and many cannot work.
Why So Many Long COVID Patients Are Having Suicidal Thoughts This thoughtful Time Magazine article discusses the immense difficulty these patients are having with finding help for their issues.
I'm a DOCTOR, for the love of all that's holy. And I. Can't. Help. Her.
So that is why we are currently in an adorable 50's motel in Sarasota FL. She is getting 6 hours/day of cold laser and infrared therapy, and I'm getting a few hours a day of beach therapy. Cold lasers have been in use for joint inflammation for a long time. There are protocols in use for Long Covid in Toronto, but most are not covered by the Canadian Health service, so there is that.
Keeping someone from killing themselves shouldn't be so...opaque. Helping people with a long-term post-infectious syndrome should be something that is getting more reasonable research.
I feel like I am stuck again in that horrible window back in the early 80's when HIV was a thing, but "And the Band Played On" was the response.
DeeDee
