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Profile picture for tiredoflc @tiredoflc

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!

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Replies to "Yes, sadly 100% with you with majority of medical visits with very similar and worse experiences..."

@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.