Family and friends deny long covid

Posted by suefish @suefish, Oct 6 11:53pm

Most of my family and a few friends, including a couple of MD’s, think that I either don’t have long covid or that I have a serious issue (such as dementia) also. I have had this for more than a year and have many signs: brain fog (worst), headaches, sinus congestion, sleepiness inappropriately, weird repeated dreams, and more. There are no significant clinics within a two hour drive. Can anyone name a place where I can at least get a diagnosis? The neurologist where I live blew me off. I’m in the old range but relatively in pretty good shape except for LC. Thanks to all of you who are presenting this opportunity to get help and information. @suefish

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Profile picture for pdoubrava @pdoubrava

@suefish i have suffered from clinical depression since 13. I was on prozac for years and it worked great. Then i went on chantix to quit smoking. That drug pushed me over a cliff. Total breakdown. Chronic anxiety which i had never suffered from before, suicidal ideation, and nightmares. I had high stress job and 2 teenagers. I survived and i was put on effexor 50 mg. Has worked great. I was not happy when they increased it to 150 in past yr due to my seratonin being mildly low. I felt good on the 50 but i am going to talk to them about the dosage. If u feel depressed i pray u are getting the emotional support u deserve and medication if u need it. If u are not prone to clinical depression but are suffering from it now it can be triggered by coping for too long or grieving too long. I feel like we are all doing both cuz in a way we are grieving our old healthier selves. This truly sucks!!!! My sister is a psychologist btw and she has treated many nurses who were traumatized during the pandemic. Its changed us all but science is catching up. I promise. I have been following the research for 3.5 yrs since LC hit me one morning with fell swoop after i arrived at my middle school. Im a teacher lol stay strong and make sure ur taking care of ur mental health. I have had so much wonderful therapy in my life. It helps.

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@pdoubrava @suefish here. I feel and have felt your pain. Thanks for sharing.

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Profile picture for suefish @suefish

@pdoubrava @suefish here. I feel and have felt your pain. Thanks for sharing.

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@suefish right back atcha my fellow LC warrior xxxooo

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Profile picture for pdoubrava @pdoubrava

@suefish right back atcha my fellow LC warrior xxxooo

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@pdoubrava @suefishalow hanging in, despite those who think I’m just crazy.

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I have had Long Covid for 5 years. My Internal Physician, my Gastrologist, my Cardiologist all ignored me. My daughter and Sister think I am faking it. Everytime I asked them about LC they brushed my concerns aside saying that I was just aging badly. I researched online and found a Covid Recovery Clinc and insisted my Physician write a referral. That's why I love this group.

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Profile picture for dfranzen @dfranzen

I have had Long Covid for 5 years. My Internal Physician, my Gastrologist, my Cardiologist all ignored me. My daughter and Sister think I am faking it. Everytime I asked them about LC they brushed my concerns aside saying that I was just aging badly. I researched online and found a Covid Recovery Clinc and insisted my Physician write a referral. That's why I love this group.

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@dfranzen @suefish I’m about in your same place — just somewhat fewer years on Long Covid. My husband tells me I’m getting dementia and that just makes it worse. Where’s your Recovery Clinic?

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Profile picture for suefish @suefish

@dfranzen @suefish I’m about in your same place — just somewhat fewer years on Long Covid. My husband tells me I’m getting dementia and that just makes it worse. Where’s your Recovery Clinic?

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@suefish There are two here in Cleveland - Cleveland Clinic and University Hospitals. I got a referral to UH but I had to fight for it. A big symptom of Long Covid is brain fog. Hang in there !

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@pdoubrava @suefishalow hanging in, despite those who think I’m just crazy.

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@suefish I refuse to give up.

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Profile picture for dfranzen @dfranzen

@suefish There are two here in Cleveland - Cleveland Clinic and University Hospitals. I got a referral to UH but I had to fight for it. A big symptom of Long Covid is brain fog. Hang in there !

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@dfranzen I’m ready to hang from a tree branch by this time!! Good wishes to you!!

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Profile picture for suefish @suefish

@dfranzen I’m ready to hang from a tree branch by this time!! Good wishes to you!!

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@suefish Thanks to all of you who write here for helping me understand it all. 🙂

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Profile picture for dfranzen @dfranzen

I have had Long Covid for 5 years. My Internal Physician, my Gastrologist, my Cardiologist all ignored me. My daughter and Sister think I am faking it. Everytime I asked them about LC they brushed my concerns aside saying that I was just aging badly. I researched online and found a Covid Recovery Clinc and insisted my Physician write a referral. That's why I love this group.

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@dfranzen sending u tons of love and good healing energy. Advocating for urself is the only way to get help. There is help out there but u have to seek it. If the Bateman Horne Center guide for medical professionals was distributed as a national initiative and each state had a task force with the power to educate about LC and set up just one center for LC where everyone that is diagnosed can get the same testing and analysis, an awesome database would be created. Let AI look for the biomarkers that they have insisted they needed to even start to care. Lol i doubt there is just one biomarker since there are 4 subtypes of LC. Interesting fact though, dogs have proven to be able to detect LC in humans. Does that keep open the possibility that there is one biomarker? Dogs can smell cancer no matter what type it is. I had a dog named Bentley earlier in my LC when i was literally at heavens gate with the vibrating in abdomen at a nightmare level. I kept saying to the ER drs, why cant u hear it, my dog can hear it. Lol my dog never left my side and he was obsessed with my abdomen. His head was always rested on it and he would sniff and look at the area suspiciously. I wish i had him still.

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