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(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.

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Replies to "PART 2: (I think my post was too long, so I had to break it up)..."

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...)