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In need of recommendations

Posted by krystalm @krystalm, May 2 1:07pm

Hi everyone!
I'm in need of finding a good and decent doctor that actually cares about patients suffering from LC that has been working with and treating LC patients. I'm hoping to find at least a doctor that I can start a virtual appointment with and go from there. I'm in Indiana near Lake Michigan & there is ZERO help with any doctor helping with LC. I'm hoping to find maybe someone @ Mayo Clinic or Cleveland Clinic but, I'm really open to options because I just want to feel better. LC has took a serious toll on my daily life and it's a lot. No matter what I've tried I'm not getting relief. I'm out of options and really need a doctor that's more familiar with LC even though so much to learn from this nightmare.
Please help!
Thanks in advance!

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friedrich | @friedrich | May 2 5:21pm

To krystalm—

There are specialty Covid clinics at the University of Chicago and Northwestern University medical centers. The U.Chicago medical center is on the South Side of Chicago, near Lake Michigan. Northwestern’s medical center is on the north side of Downtown Chicago, close to the Lake.

— friedrich

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elliep | @elliep | May 3 8:26am

what are your symptoms?
we have a lot of good info in this group.
maybe someone who has similar symptoms can provide direction.

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dhawker08 | @dhawker08 | May 4 12:22pm

Have you requested an appointment with Mayo Clinic? I would do so if not. I was seen there for LC and I can say that things are improving for me since the visit.

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2 replies
kentkemmerling1949 | @kentkemmerling1949 | May 4 6:36pm
In reply to @dhawker08 "Have you requested an appointment with Mayo Clinic? I would do so if not. I was..." + (show)
@dhawker08

Have you requested an appointment with Mayo Clinic? I would do so if not. I was seen there for LC and I can say that things are improving for me since the visit.

Jump to this post

I could not get an appointment with Mayo after 3 tries, so I went to Cleveland Clinic and have been helped and very satisfied.

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bermuda8 | @bermuda8 | May 5 9:42am
In reply to @dhawker08 "Have you requested an appointment with Mayo Clinic? I would do so if not. I was..." + (show)
@dhawker08

Have you requested an appointment with Mayo Clinic? I would do so if not. I was seen there for LC and I can say that things are improving for me since the visit.

Jump to this post

Hi - what did Mayo do to help you improve? I went and was diagnosed with LC at Mayo but they really didn't have any answers beyond "retraining your brain, meditation and pacing yourself etc.

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dhawker08 | @dhawker08 | May 5 10:54am

Hello,
A little context: I suffered my fourth Covid infection last July and did not bounce back like I had with the prior infections. Beyond the normal symptoms of Covid, I experienced Ventricular Tachycardia with passing-out episodes. Ultimately needed an ablation to stop my heart from racing. Had pneumonia three times on top of LC, or because of LC. I was always short of breath, extremely fatigued with PEM, had lots of brain fog and insomnia. I could not return to work and was forced to retire. Went to Mayo Clinic and did all kinds of tests to rule out some other cause of my symptoms. Diagnosed with Long Covid Syndrome. The doctor prescribed low-dose Naltrexone, Doxepin, Guanfacine, and Ketotifen. These meds target nervous and immune system dysfunction and brain fog. I have been on Naltrexone and Doxepin for several weeks and I definitely am trending in the right direction. I'm still experiencing dyspnea but not to the extent I was before, and I am slowly building back strength and stamina. I have yet to start Guanfacine and Ketotifen as I don't want too much at once, and it gives me a better idea of what's working if I take it slow. Feeling hopeful, but realistic. The meds aren't a cure and I worry about what the next Covid infection will do to me.

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