It seems like everytime I see a medical practitioner...

I went to one of my DR.appts on my worse day, 5 days after overexerting at a summer festival.He took a look at me and said-" are you sick?" Where is my mask?" And told me I must have a virus.

I'm there with you! I am lucky enough that I didn't have to fight too hard to get a long-COVID diagnosis once I finally decided to ask (a couple years in - I am 6 years out now). However, the past few years I have felt that my primary doctors I have had do not understand what long-COVID is and have no interest in trying to understand the latest treatments being tried.

I am so tired of doctors' responses being more tests - as if long-COVID is not a valid answer to my symptoms. You're tired? Oh ok, let's test your thyroid, do a sleep apnea study, do a blood count, etc. You say you are short of breathe? You may have asthma - have you used your inhaler? (newsflash - having SOB has nothing to do with airway constriction or inflammation, it means you are not getting enough oxygen in your cells) Struggling with fatigue? You need to work up to doing more exercise. (I have literally hiked up mountains several times while having long-COVID, not to mention many studies have disproven that more exercise is better in patients with chronic fatigue and post-exertional malaise, and rather that pacing is a much better recommendation).

I also have post-mono (which I got 3 yrs into long-COVID), and was fighting with my medical team today to get an EBV panel to see if EBV/mono virus was reactivated because I am having a flare-up of those symptoms. Despite going up the chain and my best arguing logic, they wouldn't do it. When I described my worsened fatigue, stiff neck, and nausea, which I explained I only have been having off and on since mono and at no other point in my life, they said, "you should be seen for that", completely discounting that post-mono on top of long-COVID could possibly be the cause of my symptoms.

My best advice is to know when working within (and fighting with) the modern medical system is worth it, and when to just take a step back for all the appointments, struggles, etc. and self treat with rest, any supplements that you think may help, looking for advice here, etc., and just say "screw it" to all the docs and nurses who mean well and have tough jobs, but at the end of the day cannot be bothered to understand what we are going through.

And if you do decide to engage in the medical world, give yourself extra time and space when you have appointments - don't make many other plans that week, have a friend drive you, etc, be prepared with someone you can call to vent to afterwards, etc.

Hang in there folks and keep on believing in yourself. You are the best expert on your own health and what your body is going for, and that's credibility to stand on when advocating for your own needs.

@lauragwi
I have already figured out we have to be our own advocates. And -yes-I have to pace my activities before doing anything different , including Dr. appt.

Yes, sadly 100% with you with majority of medical visits with very similar and worse experiences with our modern medical system!
I’ve had doctors who shrugged their shoulders and say we don’t treat long Covid, as if they can’t do reading in their specialty area about how Covid may impact say, the neurological system, yet there’s ample medical literature about the impact on the neurological system due to Covid infection, as most reading these sites knows
Though I’m a nurse myself, it’s completely shocking how aloof and dismissive many providers can and have been.
I was discharged from my primary care
3 months after I was hospitalized with Covid, though had been with that primary care for 8 years. Then when my health started to tank, and I needed to reach out to the office with our unusual LC symptoms, they became overwhelmed and decided it was time to cut ties with a long time patient!
It has been a 3 1/2 year long learning curve on so many levels, and the inhumanity and lack compassion has been the hardest!
You’d think that people in the medical profession would have extra compassion and would want to do an extra deep dive to try to help with your health issues and to gain information for themselves to help other people down the road…
But to date there have been a only a handful of providers who have been helpful, and I’m very grateful to them
but for the most part just put out into the field to fend for ourselves
Time is a precious commodity and we need to pick and triage ourselves as no-one us leading the charge
Frankly. many medical providers are not up-to-date and should be required by the AMA or other medical boards to have certain number of contact units about Long Covid every year
Thank you for this Mayo Clinic forum and the people who contribute, it has been a lifeline and very helpful place for information and support for fellow
Long Covid suffers
We Must Persevere LC Society!

@tiredoflc

I could not agree more. I have had similar experiences to yours.

My internist has not cut ties, but other than running rule-out tests, he has not been helpful at all with treatment and I had no diagnosis.

Overnight pulse oximetry done the first night after my first appointment at Mayo Clinic revealed IST. Subsequent tests identified POTS.

I wish I wouldn't have waited 3 years to go there, but I was too sick to travel.

I was referred to their Long COVID/CFS clinic where I received an ME/CFS and Long COVID diagnosis. I finally started to receive treatment. They are only consultative, and I can send messages there, but I am bumped back to my local provider for everything, which doesn't equal much support. (I hope this changes for other people.) My primary knows a nurse practitioner who handles POTS and she has been very helpful. I am going to start a medication that was recommended by cardiology at Mayo. I really hope it helps. Just having support for dealing with POTS locally has been a relief.

I feel like my primary is doing what he can within the limitations of knowledge. I was able to get an order with the infusion center that allows me to receive IV fluid therapy weekly, if needed.

I feel really bad for anybody else who lives here because there is no one who treats it, with the exception of chiropractors or nurse practitioners - without MD or DO's supervision - who do "functional medicine." No thanks.

I was quoted $350 per month with a 6-month commitment required and labs costing $500 to $1,000.

Anyway, enough of my griping.

I sure hope you can find someone locally and I'm so sorry your primary cut ties.