Anyone have any success with going to an LC clinic?

From my personal experience, I went to Mayo Clinic in MN last year and it proved to be a complete waste of time and money. I'm sure much of it had to do with getting no assistance from my PCP and having to make numerous calls myself, first getting denied and then ended up getting scheduled with a doctor that was terrible and uncaring. You will have better luck at the clinic in Ohio I'm sure which I've read good reviews. I wish I could get there myself, but as of today, I have over 35 unbearable symptoms, down to 83 lbs and near death.

The doc at Mayo ordered a bunch of tests (some so painful) and merely prescribed a trial Rx which he said he used himself when he had an automobile accident and hit his head. The Rx made me ill and when I returned home and tried to speak with him, he wouldn't speak to me. His nurse said, "his schedule is full and he's busy and I would need to schedule an appointment. I told her I live out of state! Worse yet, he told me he was on the board for the LT Covid care and in my opinion knew nothing. He sent me a link to watch some videos. My trip proved to be a waste of time and a lot of money.

I'm now 68 yrs old with skin hanging on bones. I've seen so many MD's and due to the first doctor telling me in 2020 "it's just stress and anxiety," all of the doctors that followed dismiss me and I'm branded; that includes when I was in the hospital. Yes, there is anxiety this horrible illness wreaks havoc on your nervous system!

Adding fuel to fire, I was not feeling well as of '19 before testing positive for Covid in Nov '21; however, I know the start of my illness was due to the horrible SHINGRIX vaccine that started it all. Getting Covid was fuel on fire! When I had Covid, my PCP would not help at all. Given my age, how ill I felt, I pleaded for medication or monoclonal antibodies, and he said, "good luck in getting it, it's in short supply." His nurse should have been on the phone calling everywhere to find a facility. You can bet if it was a family member, he would have found a facility. So, Covid ravaged my body and cells.

I noticed you mentioned you had shingles before Covid. I have to ask; did you happen to get the SHINGREX vaccine before getting Covid? I feel shingles (where vaccine or shingles itself) plays a big part if you get Covid, leading to LT Covid nightmare. Shortly after getting the vaccine, I started to get ear pain, over and over again and never made the connection. As an aside, prior to that vaccine, I was so very healthy and active with not one health issue except border line high cholesterol. I felt like I was 18 yrs young and enjoyed hiking, biking, walking, working in my yard, and loving my job and on the go. Now, I can't even walk to the corner and unable to function.

Due to the ear pain, I kept making trips to urgent care and/or ENT and told all was fine. Then, the next symptom was just not feeling well, and something was amiss. I got nerve pain on the left side of my breast (NP felt a lump, Mamo was fine) but this led to crushing sternum and chest pain along with rib pain. Today, my sternum is in excruciating pain as well as upper stomach. I continued to worsen with more symptoms, chalazion on lower left lid which became infected and had to have 3 surgeries. Everything was happening on my LEFT SIDE. Then I was told I was anemic, low B-12, zinc, immune disorder and more. All this, and I was so healthy prior! I called the pharmacy where I got the vaccine and sure it was in the LEFT arm. Now, I even have an inguinal hernia, and you guessed it, on my LEFT side. I broke out in horrible itchy and painful blisters (about 1/2" in size) on top of my LEFT foot and left torso. I called the doctor, begging to be seen or some cream or Rx and he said he couldn't help, "try calamine lotion." Endoscopy shows inflammation in stomach, gastris (prior, I never had any issues) and now the 2nd endoscopy shows multiple contractions in the esophagus and stomach which causes internal trembling and terrible pain.

I had so many MRI'S, CT scans, Ultra sounds, HIDA scan, labs so much more and enough blood drawn for 25 or more people, poisoning my body with the dyes and radiation!

Today, in addition to over 30 symptoms, I am in excruciating pain in my ears, tinnitus, terrible throbbing headache, eye pain with 4 chronic eye conditions, NERVE PAIN all over, skin feel like it's on FIRE, turns bright pink, bulging veins, unbearable stomach pain. I eat enough food for 2 people and yet down to 83 lbs. When I called the doctor last month to please be seen, his nurse said, you have 15 min and can only talk about 3 symptoms as his schedule is busy.

What got me here and robbed me of my once very healthy and happy life? The poison of the Shingrix vaccine; onset of symptoms started, then adding fuel to fire, getting Covid and in the absence of any medication, it ravaged my body.

IF I COULD TURN BACK THE CLOCK, I WOULD NOT GET THE SHINGREX VACCINE AND IF I GOT COVID, GO TO THE ER WHERE I COULD GET THE MEDICATION, MONOCOLONOL ANTIBODIES AND PROPER CARE. I know the antibodies would have stopped Covid in its tracks from invading my cells.

I’ve considered the same thing, but I think it probably depends on the clinic and how supportive/involved your care team at home may or may not be…

I live near Chicago and I’m a patient at Northwestern University, so I’m not that far from you. There’s a long COVID “clinic” here, but it’s not a physical space; it’s more a network of providers set aside who see long COVID patients. I know someone with long COVID more severe than me, and she hasn’t had a very positive experience, except with pulmonology, so it doesn’t seem that different from what I’m doing independently with my own care team. She also said they seem more interested in tracking and research than coordinating her care. But that’s just one person’s view.

I feel I have it on good authority though that it wouldn’t have been a good fit because my PCP and neurologist both told me they have patients in the long COVID clinic and they didn’t feel it was worth the wait or trouble for me.

That said, they did get a new NP in Neurology who came specifically to coordinate care for long COVID patients and is supposed to be really good. I have an appointment with her in a few weeks, and I can report back in case that might be an option for you. I only went through with it because my Neurology NP did recommend her whereas she was one of those not recommending the long COVID before.

I also have an appointment in May at Johns Hopkins with the POTS Clinic, but the director there does a lot of work and research with long COVID.

Hopefully you’ll hear from others here and maybe there will be someone who’s familiar with Cleveland Clinic.

I’ve heard of people who had positive experiences with Cleveland Clinic for POTS but mixed things about Mayo… As you probably know, POTS is similar and can also be caused by long COVID, so that seems promising?

I know you didn’t mention Mayo, but with chronic fatigue and chronic pain conditions, personally I feel Mayo sometimes has a very conservative approach, which can sometimes be limiting because they emphasize lifestyle changes so heavily and their chronic pain rehab program, and I don’t feel like that’s wrong necessarily, but it’s my perspective that these kinds of conditions require integrated and multi-faceted care. Something like pacing and OT alone aren’t going to get us as far as I feel we could go (I’ve been evaluated at Mayo twice and I have chronic conditions that are similar or related to long COVID, including POTS, and I have not had a positive experience with Mayo).

Thanks for asking the question. I’m interested to hear from others too, and I’m wishing you all the best.

I have an appointment for the "FaceTime" type interview with a member of the Long Covid team at Vanderbilt Hospital in Nashville. [it's for my husband, but we will be sitting together at our end of the connection]. I'd be interested if anyone else has become a patient in this clinic, and what their experience has been.

My experience with the ME/CFS/LC clinic at Stanford University, California was life changing. They carefully gave me and set levels for two medications - Abilify and Naltrexone. The meds brought my symptoms down about 60 percent - huge change. Before I could not walk around the block now I can walk for miles. The care at the clinic is minimal - they have very limited resources - but what they do offer was incredibly helpful and not available from the 30+ doctors I saw before going.

I think it is a crap shoot. You'll have to carefully weigh how much the trip overall will exacerbate your symptoms and condition.
It reads like you have access to healthcare trying to help you in your Indy area. Since everything is conjecture at this point so much depends on your personal situation.
I've been carefully following all the RECOVER information nationally and in Illinois. Done telehealth with the LongCovid program at Northwestern in the Chicago area. Ended up being a data source but not immediately helpful.

I’ve heard great things too about the Stanford clinic. I’m glad it was helpful for you.

It seems a lot of this comes down to the specific clinic and even if they’re not able to follow you as a patient or do more than an evaluation, if they’re really able to take the time and effort to be intentional about recommendations, and listen, that seems the best thing. That’s what makes traveling such a risk; you can’t really know unless you have an insider source.

In response to those who've had experience with the LC Clinic at NWMH in Chicago... I'll finally be starting there on 4/1/24 (April Fool's Day!), after signing up last August. I tested positive for Covid on 3/17/23, now a long hauler with typical symptoms: Fatigue!, brain fog, weakness, balance issues, rashes, etc.), and little or no help/guidance from my doctors at Endeavor Health in Evanston. The diagnosis was recently put into my health record by my PCP after ruling out stuff. My doctors there have so far showed little awareness or curiosity about the phenomenon. Sounds like I should keep my expectations of the NWMH clinic on the low side, but I'll report my experience here as we go along, and appreciate hearing from others. Hope springs eternal ...

Hi, well I’m hoping the long COVID appointments at Northwestern go more smoothly for both of us, fingers crossed! My appointment is on 3/13, and I’m seeing the new NP in Neurology there (who was recommended by my NP in Neurology). I’ll try to remember to report back.

It’s a 90 minute appointment, so that at least sounded promising? What department are you starting with?

Specific to Endeavor, they have Dr. Michael Glickman out of Northwest Community Hospital seeing LongCovid patients when referred by your PCP. He has been very helpful, open minded and caring.

Great to know! Thanks for sharing.