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One year of long covid
I have been struggling with long covid for a year now. Although some treatments for long covid are slowly emerging, they are not covered by the Dutch insurance companies because covid is completely new.
I need your help to fund the available treatments. My GP has referred me for hyperbaric oxygen therapy, the full course of which would cost €10.000. I am also hoping to find a doc who will perform a stellate ganglion blocks, which will probably cost about €2000.
What does life look like with long covid?
Covid attacks your organs, affects your immune system and causes neuroinflammation. My list of symptoms covers about a page, written out.
I'm exhausted. My days are filled with a lot of nothing. If I raise my heart rate, I experience PEM (Post Exertional Malaise - doing anything makes me ill.)
Just being upright makes me exhausted. My heart rate shoots up. This is called POTS (postural orthostatic tachycardia syndrome.)
My digestion and gut were affected. There are many things I simply can't digest anymore. Everything else is still unclear because I can't see a doctor about it. I'm on a waiting list.
My joints have been affected. I'm constantly stiff. My hands don't work. Some fingers are swollen, my hands hurt and weak. On "bad hand days" I can't open jars or use scissors. Or pull up my tights.
I get brain fog, sometimes lights, sounds and smells are too much.
When it gets bad, all I can do is lie down in a quiet, dark room. I spend at least 12 hours a day in bed.
Studies into quality of life for people with ME/chronic fatigue syndrome (which is the same thing) show that sufferers have worse quality of life than people with terminal cancer and MS.
Maybe you saw me up and about and it didn't seem so bad? You didn't see me in the days afterwards.
Puk (my partner) takes care of me. If he didn't, I'd need to be in care.
What have I tried?
I've worked with a dietician. Testing showed that covid had destroyed the lining of my gut and she's given me loads of probiotics.
I tried physical therapy, but they tend to see exercise as the solution. For me, as for many others, it caused a serious relapse.
Tried the Nurosym, which stimulates the vagus nerve through electrical pulses. Not sure if it works. It's bloody expensive though, lol.
Bits and bobs of alternative stuff, most doesn't help all that much.
I have appointments with a neurologist, rheumatologist, cardiologist and gastroenterologist. They're all in different hospitals, so they can't confer. All on long waiting lists. Doctors are pretty open about not wanting long covid patients. There's no easy fix there. I've been rejected from hospitals for being "too complicated" and rejected for "not being an academic case."
What are these treatments?
HYPERBARIC OXYGEN THERAPY (HBOT)
The hyperbaric oxygen chamber is the same thing divers go in to treat the bends. It forces oxygen into blood vessels under pressure. This can help inflammation of many different kinds.
An Israeli study on long covid showed good results . You spend 1.5hrs in the chamber for 60 sessions; that's why it's expensive. My GP agrees it may well be helpful, as do the HBOT providers in hospitals. There are good reasons to think so, athletes also use it.
STELLATE GANGLION BLOCK
This is two injections in the neck that stops the body's fight-or-flight response. There are good results for people with long covid.
Why are these treatments not covered by insurance?
In The Netherlands we have to have health insurance. I am very well insured, with extra coverage. But still this is not covered. It's because the indication "long covid" is still so new. It will take years before the insurance companies cover these treatments. I don't want to wait years to feel better.
The Dutch government decided not to fund biomedical research into long covid and is not offering any sort of funding or support for treatment. There are no specific doctors of clinics. There's no protocol. There's no support.
So far, I have spent hundreds on gut testing, probiotics, medication and supplements. None of it is covered, even if it's prescribed by an MD. Yes, even normal medication prescribed by a doctor. After two years of no income, I am spending hundreds on medication AND hundreds on mandatory insurance that covers nothing.
Definitely a mad woman with an umbrella
Please help me get my life back! Donate or if you can't, please share the link in your family app group :)
If you want to ask me anything about the treatments or how I'm doing, message me on any channel. I'll post updates on here when I start treatment. Please don't suggest spoon theory and pacing, though. That's what you naturally do when you're very ill and there's no cure: essentially it is what I am doing, but it is not a solution. I want to get better!!