Anyone have any success with going to an LC clinic?

I contracted Covid in December of 2022 and to this date have not gotten my taste or smell back. I live in the suburbs of Chicago and have been to Northwestern Hospital’s Pain Management Clinic to have a procedure called a Stellate Ganglion Block Injection. I’ve had 3 injections and thus far have only a slight improvement. I can taste salty, sweet and sour, but no flavors of any kind. I do smell my coffee grounds almost every morning, but that’s about it. I’ll be having a 4th injection in June and after that, I’m not sure where to turn. I too have Hashimoto’s and I also have Hypothyroidism. I was diagnosed with these two things after having 18” of my colon removed due to severe diverticulitis. I don’t know if the two are related, but this is when I began gaining weight and feeling extreme fatigue. I also have several food sensitivities that I now don’t eat, after having a food sensitivity test done. Gluten, dairy and soy are 3 that I completely avoid and I do feel better, but I’m also taking medication; 100 mcg Synthroid for my hypothyroidism. I do feel your pain and I wish you good luck and good health!

Hi- Just wanted to say that I had an appointment with Dr. Tae Chung in the POTS Clinic at Johns Hopkins earlier this month, and for the first time, u feel hopeful. It will be a long process, but he genuinely seems to want to help.

I had POTS before Long COVID, but he’s also on their Long COVID team, I think? It sounds like one thing morphed into another.

I also saw one of the PTs who works with POTS and Long COVID, and she was also great.

I live nowhere near, so if you live close, it may be worth trying to schedule or getting on a wait list.

I’ve also heard positive things about Stanford, but I had already gotten an appointment at Hopkins, so I stuck with that. Wishing you the best of luck.

I agree. I had POTS, fibromyalgia and central sensitization syndrome prior to Long COVID, and if I’m being honest, I do feel quite conflicted by all the attention Long COVID and POTS, and even post-exertion malaise feels like a trending term now. I am glad there’s more awareness, and hopeful this will yield more research into these conditions… But if it weren’t for COVID, the rest of us fighting to be believed and access care with chronic pain syndromes would still be bumbling around. And now somehow the number joining our ranks has exponentially multiplied!

I also know that rationally, fighting for resources isn’t helpful when the real problem is there aren’t enough resources. But it’s hard for me not to feel at least a little upset that I was languishing on waiting lists for POTS clinics before COVID and now it’s nearly impossible to get in with a POTS PT or provider.

I’m sorry to hear it was such a negative experience. When did you have the consultation? I am only going on my second appointment in a few weeks, but I believe I had a much more positive experience because I saw Dr. Koralnik’s PA, Aasheeta Bawa.

I’m a longtime patient in Neurology at Northwestern because my conditions precede Long COVID, and in my experience the neurologists aren’t necessarily helpful. I get far more out of seeing the NP and PAs, and Aasheeta does video visits for follow-up, so if your wife did want to talk to her, the stakes would be low—you wouldn’t even need to go into the office.

Or, I strongly recommend Dr. Anna Jonas in the Osher Center for Integrative Medicine at Northwestern. She is fantastic and has been seeing chronic pain and chronic fatigue patients of all kinds since before COVID. She is my PCP and has worked with me to come up with a plan for my symptoms with actual interventions.

But honestly, as someone who’s battled chronic fatigue, et al, well before COVID, I expect very little out of my specialists (neurologists in particular) other than prescriptions. Physical therapy and rehab geared toward neuroplasticity and figuring out creative ways to address my worst symptoms has given me the most traction.

I’m sorry you and your wife had such a negative experience. I’ve definitely been there; I might be experiencing that same frustration as early as in a few weeks when I have my follow-up…

Wow, seems like there are a lot of people in the Chicago area on this thread.

As someone who’s has POTS induced by a viral infection before COVID even existed, central sensitization, and chronic pain and fatigue, I feel like I want to clarify that one of the main treatment modalities for these types of conditions *is* very slow, graded exposure to exercise. Often it begins with swimming or non-weight bearing activities, or something you can do supine (lying down or recumbent). That’s where I started—3 minutes on a recumbent bike. Maybe it was even 2 minutes.

The idea is to begin with whatever your window of tolerance is and exercise within that window, without triggering the post-exertion malaise. It’s based on neuroplasticity, the idea you can retrain your central nervous system to understand the activity is safe and slowly grow that window of tolerance over time. It helped me, until COVID derailed my progress. But I realize that can sound unsatisfying and dismissive to basically be told to exercise (I’ve been there). I’m recently returned from the POTS/Long COVID Clinic at Johns Hopkins and I even have a template of an exercise schedule very similar to the original model I used before, but it’s from one of their PTs on the Long COVID team.

Everyone’s different though; it’s not a new idea, but some people may have virus still circulating in their body and need immunotherapy or other medications to help make the above possible. My POTS was also triggered by a viral infection and if exercise therapy fails me, we may try immunotherapy.

There are medications used now—stimulants, or I take LDN. Still, graded exposure has been the foundation for me.

The thing that sucks is that most clinics provide little to no guidance and context. No physician ever taught me this; I got the most traction out of PTs trained to work work patients with chronic pain and fatigue.

Second: I’ve seen numerous neurologists especially at Northwestern. 99% of them have lacked empathy and social skills and most focus on prescriptions. I didn’t go in expecting much else, least of all problem-solving. Most of that, if I’m going to get it at all I look to the PAs and NPs in the department. I think that’s why I had a more positive experience with Dr. Korelnik’s PA. I didn’t even schedule with him; I was referred straight to his PA.

Third: I can’t believe I’m doing this because I don’t want to make it any harder to get an appointment with my PCP lol, but if you’re in the area, I strongly recommend Dr. Anna Jonas at the Osher Center at Northwesrern. She’s a DO, amazing, and has been treating patients with chronic pain and fatigue since before COVID. So she might be an option.

I have comments which may be useful to you. Please see my prior post:
https://connect.mayoclinic.org/comment/1075630/

Can you give me the name of the doctor at northwestern?
Thanks
Jill

Like everybody else, I’ve been thrashing around for two and a half years finding no answers and no help.
I have seen dozens of doctors and specialists who treat me for what they know, not what I have, so not surprisingly the therapy (even surgery!), does not work.
I have neurological issues affecting vision, hearing and digestion.
Extreme hyperacusis and tinnitus make me feel like I will lose my mind. I am too dizzy and disoriented to have any life at all.
I don’t think I can last much longer. I still go to a few useless appointments.

I feel the same way. I have been dealing with the same dizziness, lack of balance and frustration for almost 4 years now. I have seen GP's, neurologists, chiropractors, and anyone else that will listen and I am only getting worse. I tried to get into Mayo Clinic and have been rejected 3 times and most recently to Cleveland Clinic and was told there are no appointments available. I am at a loss.

Sure. If you mean the Long COVID physicians, I specifically saw Aasheeta Bawa, PA. She's the PA for Dr. Koralnik, whom I've heard mixed things about (many of them in this thread). They're technically in the Neuroinfectious Disease clinic in Neurology at the downtown campus. You can find them on this page: https://www.nm.org/conditions-and-care-areas/infectious-disease/covid-19-overview/comprehensive-care-after-covid-19/meet-the-downtown-comprehensive-covid-19-center-team

(If you wanted the name of my PCP, let me know. I highly recommend her, but I just found out there's a yearlong wait for a new patient appointment with her. Her colleague has openings sooner though.)

I recommend calling to schedule with Aasheeta. I'm a longtime Neurology patient and with the super-specialists, I always find that the NP or PAs tend to want to get to know me more as a person and have longer appointments that are available sooner. In my first appointment, she took the lead on taking down my history, but Dr. Koralnik came in to speak with me at the end too. I felt seen.

My major disclaimers are related to those I've alluded to in this thread--Neurology anywhere, but in particular at Northwestern is not really known to be the most communicative or personable of the specialists, and they use the typical model of testing/assessing, then moving on to medications, of which there are very few clear-cut options for any type of chronic pain condition, let alone Long COVID. If I was going to be really cynical about it, I'd say: "They just took a bunch of notes on my symptoms, said they're sorry, and offered me a script for an antidepressant/neuromodulator and sent me on my way." But while that did happen, I did learn some things I hadn't learned before and was given some leads that were new to me.

If you're interested in medication, they are aware of the options that are evidence-based and used off-label. They pretty much stick to things that have more established research though (i.e. they're not prescribing Paxlovid).

I don't regret going, but I managed my expectations because I've had chronic pain conditions for a very long time before this and in my experience, most of the responsibility frustratingly falls on the patient to do research, follow up, and follow through, and it's also my experience that physicians, particularly in Neurology, aren't very well-informed about non-pharmacological interventions for conditions like fatigue, post-exertion malaise, brain fog, or any type of chronic pain. And that's one of my pet peeves because those are some of the most effective interventions with the least amount of side effects. But that's a different soapbox for another day.

I was basically expecting it to be sort of impersonal and mostly revolve around collecting information and some possible offers for off-label use of medication or the standard options already out there for chronic pain...I hoped for support with PT, OT, or speech. But my appointments with Aasheeta have been positive. They did offer medications, but they also told me about their support group and told me of some options I hadn't heard of before, such as cognitive therapy to help with my brain fog.