Anyone have any success with going to an LC clinic?

Hi @lshecky. Based on my personal and professional experiences, there are many variables for care from different healthcare systems. This is a long healing time and doing things in the least amount of stress and any tiring activity on your body is crucial. Suggest try the remote clinic via zoom etc. option first and see if home based suggestions/teachings can offer you needed support. Then can seek commute/travel care if needed as travel can be triggering for crashes while there or back at home after , with the financial stress potentially crippling. Most plans do have long covid clinics/assigned doctors at least via zoom, that many pcp/specialist doctors are unaware of. Your healthcare systems social worker can help set up and assure diagnosis of long covid with all your symptoms clearly listed with each icd code next to it thru medical record dept. If thats not helpful, your PCP hopefully could do summary note of your diagnosis codes with daily life challenges and/or the medical records dept document to refer to long covid clinic. If your healthcare system states they do not have that clinic/doctor, then you have their written documentation stating that with succinct medical records to provide with your referral request to a clinic close to you/of your choice etc thru your physician or yourself using the long covid appt request links on most system
websites🤞Hope explained well and wish the fastest healing journey to you🌈

Hi @lshecky. Forgot to say know how challenging just getting your food can be and call to social worker may be your best first step to hopefully do whole process🙃

You are so kind for taking the time to provide all of this information to me. Thank you so so much.

Hi, Emo: I'm starting with a doctor in Neurology, not sure how long. Good luck to us both! I'll also try to keep posted here on whatever comes of this. BTW, when I signed up last August, I really didn't think I'd need to keep it because I had planned on being all better by now. Such is life with LC...

@emo Just wondering if you've gotten in to see the new NP at NWMH LC Clinic? I have been on their waiting list since August, 2023, scheduled to begin next week (4/1). Just got a call informing me that the neurologist I was to see (Dr. Carroll) is no longer seeing patients in the LC clinic, and next available for me will be 9/11/24! So disappointed. Though I didn't have high hopes for much help, still... Wonder if I should try to get in to see the new NP in Neurology? Would be interested in learning what your experience with her has been.

Sorry for the delay. I did see the NP a few weeks ago! I definitely recommend it. It’s still not perfect; you have to do a lot on your own but they are game to give recommendations which is more than I was getting elsewhere.

And coincidentally I’ve seen Dr. Carroll and personally would not recommend her. I saw her years ago and she completely misdiagnosed my neurological condition—told me to “try not to think about it” and come back in 6 months if I still had symptoms. But I know others have had positive experiences.

I’m so sorry for the delayed reply. For some weird reason I stopped getting notifications and I can’t DM people and I contacted support but no response.

I can’t respond in full now but promise I will this weekend. Sorry to be a tease >_< But I promise I’ll reply. Been on my phone for too long.

Hi @janeaddams,

Ugh I wrote a big long reply, and it got deleted!

So that I understand: Are you saying you had an appointment for April 1st, but it got cancelled because Dr. Carroll no longer is seeing patients in the Long COVID clinic?

Either way, given the symptoms you mentioned, I think it's worth scheduling with the PA, Aasheeta Bawa. I misspoke, and she's actually the PA for Dr. Koralnik, which I completely did not know when my Neurology NP referred me. As long as you're okay with managing expectations, which it sounds like you are, I think it might help give you some direction and it sounds like it still makes sense to start in Neurology. Like you said, I didn't have high hopes because I'd heard from multiple providers (most of my care is at Northwestern) that the Long COVID clinic may not be as helpful to me because I already have POTS and central sensitization, and have been getting treatment, primarily with physical therapy at Shirley Ryan. One of my doctors is on the Long COVID team, and she has Long COVID. She told me one of the frustrating things is that especially for things like fatigue and brain fog, the treatment is basically the same--which I took to mean that it doesn't get as much attention as it should, and the interventions they recommend mostly rely on off-label use of medications that have side effects. That approach hasn't really been successful for me--I'm far more interested and invested in the research and interventions that rely on neruoplasticity and re-training the central nervous system...but that's a different soapbox for a different day...

Dr. Koralnik is in Neuroinfectious Disease, and it's my understanding he's one of the leaders on Northwestern's Long COVID team. At least, he's very involved in the Long COVID research, and Northwestern is one of the NIH research sites testing Paxlovid for Long COVID, but you have to be selected to participate.

My appointment was with Aasheeta Bawa, his PA. I scheduled in January, and at the time she had availability within 4-6 weeks, but I pushed it out to March because I just have a lot going on with my chronic conditions and being a caregiver for my father. But maybe you can get in with her sooner than September. The initial consultation is 90 minutes, and I was not expecting to meet Dr. Koralnik. I wish I knew that because I would have prepared differently. I'm guessing that's the last time I'll see him in person, based on Northwestern's typical model in Neurology.

My PCP and Neurology NP both reached out to Aasheeta, and she was very willing to consult with them and help me feel comfortable during the appointment (I've experienced medical trauma). We reviewed my history before/after COVID, and she has a set list of questions and symptoms they ask about; she wanted to know my most limiting symptoms; and she did a neurological exam. After that she left to review my case with Dr. Koralnik, and to my surprise they both came in to talk to me. After Dr. Koralnik left, Aasheeta did cognitive testing with me, which they said they offer everyone reporting brain fog and fatigue.

He gave me his schpeel about what they know of Long COVID (not much, but they're actively researching it, and what they've found is that people do get better, but it takes a lot of trial and error, and time). He confirmed I do fit the pattern of what they're seeing in patients with Long COVID, so I got an official diagnosis. They did seem very empathetic--"We're really sorry you're going through this" was said multiple times; of note, my doctor has told me no one on the Long COVID leadership team actually has Long COVID. He told me about the research they're doing, and on my way out, they had me talk to two of the representatives briefly who explained their research and asked if I wanted to participate, but there was no pressure.

PART 2:

(I think my post was too long, so I had to break it up)

They went over their recommendations:

-They ordered some labs to rule out other potential causes and also a home sleep study, in case that could be a cause of my fatigue (I expect it to be normal).

-For fatigue, they typically prescribe medications: Either a low-dose antidepressant (can't remember the name, but I can look it up if you're curious) and/or a stimulant--both of which they use for fatigue with other neurological conditions, and they've had some success with Long COVID patients. But I'm sensitive to medications and afraid of that right now, so I declined for now.

-Pending the results of the cognitive testing, they said they typically refer patients to cognitive therapy at the Shirley Ryan AbilityLab.

-They offered me other referrals based on my symptoms. I took a referral for a GI consult.

I'm in a slightly different situation because I had other underlying conditions before this, including POTS and small fiber neuropathy, which were thought to be caused by a viral infection. So I sort of didn't need an entire workup; I had very specific questions. But I asked for a GI referral, and I'm sure they'd give you referrals for Dermatology for your rashes and anything else you wanted or needed.

I left feeling a little disappointed because I felt like they took a giant inventory of my symptoms and are ultimately going to put it into their databank for all their Long COVID research, but for the "Comprehensive COVID Clinic," it didn't feel very comprehensive. This didn't surprise me though, because I find that's the case with most "comprehensive" chronic pain programs. In my opinion, there are some gaping holes in this "comprehensive" clinic, but I can tell their heart is in it. For example, they don't have a physiatrist on their team, and given that the #1 rehabilitation hospital (SRALab) is right down the street, I don't understand why they don't have established partners there for either cognitive therapy (which is through Speech Therapy) or PT. It's just weird. They didn't really have any suggestions for physical therapy, integrative therapies or basically anything that's not a prescription medication. I asked about the study showing NAC helped post-COVID brain fog and studies suggesting vagus nerve stimulation could help, and it was like crickets, which was frustrating. They don't prescribe Paxlovid off-label, though they made a point of asking me if I improved on Paxlovid (I felt GREAT on Paxlovid--maybe I should ask if they'd prescribe another course).

I wasn't surprised, but I still felt disappointed. It's hard not to get my hopes up, even though I've gone through this So. Many. Times. with my chronic conditions.

Now that they have Aasheeta there though, they can provide more support and follow-up, which from what I've heard didn't happen at all before. You'd see Dr. Koralnik for 10 minutes, and after that, that was it. You were just stuck messaging his nurses. They recommended a 4-week follow-up, but I pushed my out farther because I want more time to work through the orders and try cognitive therapy.

The cognitive testing showed I scored "below average" for attention and processing and "average" for working memory, but on the lower-end, which was...sobering. That was enough to refer me to cognitive therapy, so I decided to try that first because I get post-exertion malaise from cognitive tasks, too.

I definitely don't regret going, and the wait was not so long, or it wouldn't have been if I had the bandwidth to have seen her sooner.

Hi, Emo: I. Can't. Believe....I didn't see your replies sooner... I too got no notifications and I can't DM you, for some reason....
I cannot thank you enough for your report! I was due to start the NWMH LC clinic on 4/1; got a call a few days earlier saying Dr. Carroll had left the clinic and my appointment moved to mid-September, with Dr. Karolnik. It's late now and I'll keep this brief, but had to let you know how much I value your detailed response. I'll send another message when I'm awake (PEMing right now). I am so sorry your results have been so miniscule... it sounds like you too have kept your expectations low. Reading these comments for the past few months has taught me not to expect much from the medical profession ... yet. I know you're dealing with other medical challenges as well, how difficult it must be. It's amazing how much time and energy this all takes... and mental energy drains
my battery too. (Have you seen the Mayo Connect discussion on "hope"? It's sorta helpful...)

I heard Stanford was Good too.I wish I lived closer to California.I spoke with a girl that went there for help with so many issues from Long Covid and she is so much better now.I think they really look outside of the box there.I am close to John's Hopkins,but I don't know if they will be any help.The best doctor at John's Hopkins could not even figure out I had thyroid disease.Luckily a local doctor figured it out.