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Anyone have any success with going to an LC clinic?
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
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I think what's happened with this is that there isn't one protocol that addresses long COVID as this is something that is different for everyone depending on their immunological status and other factors. As far as I know, there are no longer any long COVID clinics, per se.
All the doctors can do is address issues as they come up and there are many, many issues that come up for us.
What has worked best for me is to find the best internist you can and get referrals for whatever ails ya.
That's all they can do. Find out what you don't have and keep drilling down. We are sisters from another mister. I got COVID in December 2022 and I still have the exact same problems, except I had so much pain I had to have my hip replaced and now I am nailed the bed.
I was in the ER two nights ago with symptoms of a stroke on The left side of my face and the inability to put weight on my left leg. I've had the leg pain for 2 weeks and the advice from the fill in internist was elevation and Tylenol. (My regular doc was dealing with the deaths of two immediate family members.)
I didn't have a stroke. We now know a lot more about what's not wrong with me.
I am being treated with a crap ton of antivirals and prednisone, and as of yesterday afternoon and I feel 90% better.
I also had some independent lab work done this past spring and found that my DHEA was low and my cortisol was low. I repeatedly need IV fluids no matter what I do for high duration. Very long story short, I have to see the endocrinologist for suspected secondary adrenal insufficiency.
And I am going to get in as soon as possible to an immunologist as of this morning.
I'll have to taper on the prednisone, but I will be on the antiviral for at least 6 months, more likely a year.
What's broken things loose is I went on ChatGPT and entered all of my symptoms and my labs and I received a direction to go in. I don't know where I found the energy to do that because I am a shell of my former self. Highly recommend you try it, too.
Yeah, I think you're spot on with that assessment as that is what I am finding as well. There is no "one specialist" or fix for this mess so we're stuck with what we've got and that is trying to pick the things off one at a time. For me, many of the symptoms I have now are symptoms/things I had previously (minus the brain fog) but they were very minimal and not at all life altering. Now, however, some of those same things are like 10X worse. We just have to keep on keepin' on and pray it eases up eventually.
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Have you heard of this doctor, Katie Brown MD? Her clinic name is Grounded Serpent Family Practice (I can’t post the link). I’m in northern Indiana and just did a search for ME/CFS doctors around me and her name came up. It seems like she has offices in a few areas? I realize it’s not the same as long covid, but a neurologist has tentatively dx’d me with CFS. I scheduled a free consult but her first availability is December.
You can't get the vaccine when you have an ongoing active shingles virus.