Long Covid (probably a form of ME/CFS triggered by Covid) is one of the worse diseases one can get. It invalidates you as a person physically and mentally and there are no solutions around. At the same time you are gaslighted by doctors and people because there is no clear diagnosis.
My wife is already on her 3rd year and I just could witness first hand how shallow is the knowledge of most doctors, how they have zero curiosity or enthusiasm to help and especially in Europe, how are they extremely averse to try anything with the "do not harm" in mind.
They think that doing nothing is better than trying a non-approved treatment and I'll put an example. My wife had a respiratory tract infection back in October which probably got while going to the GP by the way. With Long Covid her immune system seems very compromised, she never leaves home if it's not imperative because even with a wheelchair is too much effort. I don't attend almost any social event and I take a lot of precautions. Anyway, with the infection she was coughing blood for 3 days and then she was unable to breath properly, having drops of oxygen saturation down to 86% and waking up breathless in the middle of the night.
She documented her symptoms very well including her saturation measurements. The GP just told her to wait for a few weeks for full recovery and everything will be back to normal and he literally said he had no time to read her notes. She asked please to get an oxygen concentrator or at least be sent to a pulmonologist. This request was denied and of course the only option she had was to buy the concentrator on her own which helped a ton. Probably if she got it the 1st year she would be much better by now.
She is taking like 10 supplements and medications, she is using infrared light, oxygen concentrator, wheelchair, special pillows, asthma inhaler, etc... All this helps her to have a bearable existence but guess what, not a single thing was proposed and prescribed by the doctors. Almost everything she takes is based on small studies from internet and experiences from patients. Mostly from the USA where doctors are much more open minded and willing to take risks which is necessary when your default baseline is almost like being a tetraplegic with dementia and chronic pain.
She has to get pretty harmless drugs like Sulodexide (a blood thinner) from other countries in a shady way because the Doctors in the Netherlands won't even prescribe this.
There is some progress in diagnosis or biomarkers detection and some promising studies for cures like monoclonal antibodies, antivirals and others. But meanwhile it's a pure nightmare to live with Long Covid.
I was halfway through your comment and wondered which country this would be. Well, hello fellow Dutchie.
Since my father's death, I say In the Netherlands, doctors only start acting when you are dying.
My father's GP let him die of acute leukemia, guessing his severe tiredness had something to do with an onset of diabetes. It was not a single visit. Had no bloodwork done. GP claimed to be specialized in geriatrics. My father was 63.
About a day after his last visit my mom took him to the ER, which did bloodwork, and a couple of days later he died ( they tried an emergency chemo ).
I'm very sorry to hear that your father died a preventable death.
I'm currently in a Dutch hospital, recovering from an (attmpted, they ended up leaving it inside me, can't fully explain why) appendectomy. From calling the after hours huisarts number with a stomach ache to being on the operating table was less than 24 hours for me. The hospital stay have been amazing and I doubt I would have had such prompt treatment back in Canada.
But I have also had to argue with the receptionist for over 10 minutes to be able to speak with my GP here for a consult after I paid for private bloodwork with two critical results and 6 out of normal range... So I feel like it's down to luck here when they decide to take things seriously.
I don't know what happened in your case but the standard of care for simple appendicitis is now to try a course of antibiotics first before a surgical appendectomy.
I'm currently on a course of antibiotics. They said the tissue around the appendix was to infected and they were scared they would rip it and damage something. They are giving me the option to have the appendectomy after I successfully recover with antibiotics but advise against it. I wish we had started with the antibiotics but here we are now.
There is obviously whole medical system for cash paying upper class. That’s why I am trying to have some cash on hand for medical emergency. Few thousand euros can make a difference of 50 years in treatment methods here in Germany. The outcome may be massively better this way. Sadly I learned this lesson the hard way.
This is what pisses me off about public medicine. If you're going to provide a service that's so bad I have to save for a private doctor anyway, why in the hell am I paying so much in taxes towards it? Out of the goodness of my heart for others (so they can also receive shitty care)?
And yeah the dying comment is 100% true for Denmark too. The doctors have no clue about what preventative treatment is and will just let it fester into something more serious they're forced to treat - diabetes is a huge example of this.
From personal experience, I was left waiting for a testicular cancer biopsy for over a year. After the operation I found out if I did have cancer there was a high chance the biopsy would've caused it to progress much more rapidly (as opposed to other methods of checking). So great you let the cancer grow in my nuts for a year, and then you make it more aggressive? wtf?? Thankfully I was diagnosed cancer free.
We pay a lot of taxes for healthcare insurance, and the primary level of healthcare is totally fscked. When the employer has to deduct the insurance from your paycheck, even goddamn cent is double checked by the government... when your primary care physician quits/dies/retires, well, "sorry, there are no doctors taking new patients in your area". Further away? Nope. Somewhere finally a new doctor starts and accepts new patients... this: https://images.24ur.com/media/images/1106xX/Sep2024/5916255a... (yes, this is the line of people without a primary doctor trying to get one).
So, fever, general unwell feeling... could be a flu.. could be bacterial.. probably just a flu.. or a cold... it's always just a cold.. but are you sure? You could go to a private doctor, pay for the checkup, pay for the blood work, but will you pay if it's probaby just a cold/flu?
Feeling really bad and also start vomiting + diarrhea? Go to the only place where you can get checked out fast... the emergency room... and then emergency protocols have to be implemented there, because there are too many people there, and they can't handle it.
that is a horrible way to be treated by a doctor. In Germany you have free choice of your doctors. Although sometimes you have to wait quite a bit to get appointments...
I am not sure, but with a a European health insurance card you should be able to also go to doctors in other countries and be at least partially covered by your insurance.
GPs here are just absolutely useless. Have you tried reaching out to one of the specialized clinics? I've been under treatment for ME/CFS at Vermoeidheidkliniek (yeah, not the best name) and all of the specialists there have been incredibly helpful and willing to try different things.
They don't have very good reviews in Google but I can give it a try. My wife is in the queue for the new "Long Covid Clinics" but who knows when there will be room... they opened in November and we didn't hear anything else since then.
Anything not immediately fatal is indeed treated by just taking it easy and perhaps some paracetamol for the placebo effect.
I have a chronic illness in the same kind of category and it took me years to find out what it was and to get proper treatment. Which has improved my quality of life dramatically!
But even now I travel halfway across the country to a university hospital where a specialist takes me seriously, the GP is still a bit 'meh whatever'. I'm fairly sure he put a "psychosomatic/hypochondriac" flag on my file and never removed it when the specialists diagnosed me.
Our healthcare system has overcorrected on what they dismiss as 'aanstellerij' en 'Amerikaanse toestanden' and many in the field are actually quite proud of this.
I find specialists here have zero intellectual curiosity. Sure, they recognize the most common condition in their field when blatantly obvious.
When it comes to the second most common issue in their field or anything not blatantly obvious (significant test result and 10/10 excruciating pain), they will just offer no diagnosis and go no further.
Just getting them to do an exam or even order a test is a huge challenge…
It seems to depend on who you see and, probably, where you are in the country. Every time I go in to see my GP he seems to schedule a battery off lab work. And when I went to a dermatologist for an annual mole exam I left with prescriptions for dandruff and eczema.
My wife is already on her 3rd year and I just could witness first hand how shallow is the knowledge of most doctors, how they have zero curiosity or enthusiasm to help and especially in Europe, how are they extremely averse to try anything with the "do not harm" in mind.
They think that doing nothing is better than trying a non-approved treatment and I'll put an example. My wife had a respiratory tract infection back in October which probably got while going to the GP by the way. With Long Covid her immune system seems very compromised, she never leaves home if it's not imperative because even with a wheelchair is too much effort. I don't attend almost any social event and I take a lot of precautions. Anyway, with the infection she was coughing blood for 3 days and then she was unable to breath properly, having drops of oxygen saturation down to 86% and waking up breathless in the middle of the night.
She documented her symptoms very well including her saturation measurements. The GP just told her to wait for a few weeks for full recovery and everything will be back to normal and he literally said he had no time to read her notes. She asked please to get an oxygen concentrator or at least be sent to a pulmonologist. This request was denied and of course the only option she had was to buy the concentrator on her own which helped a ton. Probably if she got it the 1st year she would be much better by now.
She is taking like 10 supplements and medications, she is using infrared light, oxygen concentrator, wheelchair, special pillows, asthma inhaler, etc... All this helps her to have a bearable existence but guess what, not a single thing was proposed and prescribed by the doctors. Almost everything she takes is based on small studies from internet and experiences from patients. Mostly from the USA where doctors are much more open minded and willing to take risks which is necessary when your default baseline is almost like being a tetraplegic with dementia and chronic pain.
She has to get pretty harmless drugs like Sulodexide (a blood thinner) from other countries in a shady way because the Doctors in the Netherlands won't even prescribe this.
There is some progress in diagnosis or biomarkers detection and some promising studies for cures like monoclonal antibodies, antivirals and others. But meanwhile it's a pure nightmare to live with Long Covid.