1. < Post-COVID Recovery & COVID-19

Anyone have any success with going to an LC clinic?

Posted by lshecky @lshecky, Mar 1 6:40am

Anyone actually go to a recovery clinic and get any more help feeling better than prior to the clinic from your own doctors? I’m an Indianapolis and I’m considering going to the REcover clinic at Cleveland clinic in Ohio.

I’ve had LC for 10 months now. Before that, I had shingles. We cannot figure out why my cortisol is only at 1.1. I’m being treated for Hashimoto’s disease, chronic migraines, trigeminal nerve pain on the left side of my face, chronic fatigue, sensitivity to light and sound

I see a immunologist, neurologist, therapist for anxiety, endocrinologist, family doctor, etc. Anyone with long Covid knows about long list of doctors

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

lkirnbauer | @lkirnbauer | Aug 23 11:59am
In reply to @nhg "Ishecky, I waited for such a long time to get appts at Long Haul Clinic in..." + (show)
@nhg

Ishecky, I waited for such a long time to get appts at Long Haul Clinic in one of Chicago’s finest hospital systems. Like you, I was sent to several different types of doctors for different tests and besides finding out the results of tests, I was given little to information as to how to heal. I got so disappointed I stopped seeing doctors and still suffering four years later. I found LH Clinic which was a string of doctor appointments not an actual program or clinic to be very disappointing experience. I hope you find solutions and support you seek

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I live outside of Chicago in Batavia, Il. May I ask who you saw and what hospital did you go to for Long Covid? I’m asking because I lost my taste/smell in December of 2022 two days into Covid and don’t have it back yet. I’m currently having Stellate Ganglion Block Injections and just had my 5th one at the Pain Management Clinic of Northwestern Hospital in the city. I will try anything at this point.

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suzyb | @suzyb | Aug 26 11:14am
In reply to @iamawriter "Hi there - I subscribe to several medical or medical related lists to get LC information...." + (show)
@iamawriter

Hi there - I subscribe to several medical or medical related lists to get LC information. I just received one last week about criminal charges being filed against two FLCCC doctors. It may have been in a Mayo digest. Be forewarned about FLCCC!

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What does FLCCC stand for?

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2 replies
www3 | @www3 | Aug 29 12:15am

No they said they couldnt help me

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www3 | @www3 | Aug 29 12:18am
In reply to @dawn1290 "I am using the Leading Edge Clinic established by Dr. Pierre Kory. The telehealth visit are..." + (show)
@dawn1290

I am using the Leading Edge Clinic established by Dr. Pierre Kory. The telehealth visit are not covered by insurance. Some of the blood work is. The first test they ran showed I still have spiked protein in my blood. I have Long Covid (non vaxxed). I have MECFS, MCAS, PAH, Type 1(previous) Hypothyroidism (previous), Migraines, Tinnitus, stomach issues, Brain Fog….probably missing some diagnosis. I think I have had every test, seen every specialist and non would believe that this is all Covid related. Now thanks to Dr. Kory’s team the puzzle is solved! I am also waiting for results from my micro clot test. They have prescribed triple anticoagulants and supplements to treat and rid me of the spike protein.

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What test do they run for a spike protien and to get rid of it?

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2roses | @2roses | Aug 29 10:44am
In reply to @suzyb "What does FLCCC stand for?" + (show)
@suzyb

What does FLCCC stand for?

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Front Line Covid Critical Care.

One of their doctors helped me when I had Delta Covid and the hospital that was supposed to give me monoclonal antibodies was too busy to get me scheduled. The hospital said that they’re only open from 7-4 Monday thru Friday and that it would another 2-3 days to get me in. I told them that I was already on day 6 , doing poorly and immune compromised. It made no difference. They blew me off.
We contacted the FLCCC doctor in our area and they said to bring me right down and got me the monoclonal antibodies the same day. They were a lifesaver.
To be honest, the FLCCC are shunned by establishment medicine for their support of Ivermectin, but they were instrumental in saving my life where establishment medicine completely failed me and didn’t care.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Aug 29 11:32am
In reply to @suzyb "What does FLCCC stand for?" + (show)
@suzyb

What does FLCCC stand for?

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Hello @suzyb,

The FLCCC has been met with criticism for promoting treatments that are not always backed by scientific data. Ivermectin has not been consistently shown to treat COVID or Long COVID - https://www.fda.gov/consumers/consumer-updates/ivermectin-and-covid-19. The data from this FDA update is as current as April of 2024.

Despite feeling like COVID has been around for a long time, four years is still a relatively short window as far as medical research goes and the medical community is still in the early phases of research for treatments and understanding. It is important to always consult with your provider when seeking treatments or to present them with information you have found as well. You may find that some providers are open to alternatives, but it is always wise to keep them in the loop.

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janeaddams | @janeaddams | Oct 2 7:48pm

For @emo and others: I've been a patient in the LC clinic at NWMH in Chicago since 9/11. My experience was pretty much the same as others... a long interview with a young neurologist, then Dr. Karolnik flew in and said nice things and then a prescription for sleep study... I sleep fine when I'm not deep in PEM so no to that; a prescription for Amantadine which I'm hesitant to start because of worrisome side effects, off to blood work, not much else. I'm to have a follow up visit in a few weeks with his PA, and have rejected a referral to Shirley Ryan Lab for now. One good thing; he suggested the support group which meets monthly via Zoom, and I signed up and attended last Thursday's meeting. I found it very helpful; many patients who've been seen in the clinic attended and some very long term LC sufferers, seemingly highly functional folks, and a capable LCSW moderator, who sent me a link to YouTube recordings of previous sessions, at least the part where the visiting doctor speaks for the first half hour and takes questions. Last Thursday's presenter was an ophthalmologist and I learned a lot about Covid and effects on vision. I recommend the group to anyone who's a patient of the LC clinic at NWMH... to join, contact the moderator, Mike, at 312-926-0313.

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