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Anyone think that it’s no longer long Covid? just permanent damage?
It’s been 10 months since I was a happy, successful, talented businessman and family guy with a nice suburban life.
Now I have trouble with basic memory and processing.
I’m in a couple of clinical long Covid programs, had tons of tests, and am on dementia meds and adderall to repair neural connections and help me focus at work. I’m tired of all the neurologists and endless testing.
I don’t even know if it’s meaningful to say I have long Covid. I’m just screwed up, like someone in a car accident who will always limp or is missing an arm or is paralyzed.
It seems I’m left with “managing the symptoms” until brain fog, dementia, Parkinson’s, traumatic brain injury, MS, and other related brain ailments are magically cured.
I’m trying to accept I’m a new guy now. I’m stuck trying to pretend I am the pre-Covid guy and just being a blurred xerox copy of myself.
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I don't think there is a cure for long COVID. My LC clinic told me that COVID went through and turned on my "bad genes". I have non-curable issues - POTS, Neuropathy, CRPS, gastroparesis, etc. I am at my best acceptance point of my new normal after over 3 years of hell. There is no going back and being who I was before. I am working on the best case scenario for the messed up new me. Low energy hobbies. Low bar happiness - example being I woke up today. I made coffee and could drink it. If I have a day and crave a food that in turn smells good and I can eat is really exciting. Even as we navigate our new normal, remember we all still have value. It can always be worse. I would rather wake up and feel bad vs not waking up. Happy New Year. I wish us all good luck and the base case living with our new normals.
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3 ReactionsLC has made my arthritis 1000 times worse. LDN has helped my pain.Also watch my diet and NO sugar. Sugar seems to trigger arthritis I have had two rounds of physical therapy and now pulmonary rehab. My oxygen level and stamina is greatly improved. Hang in there and keep the faith!
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1 ReactionTrying not to hate the “new me”. I cannot hear, or see well. I’m dizzy, constipated, have tinnitus and hyperacusis. Since I cannot hear or see well I can’t drive....and where would I go? Stores and crowds overwhelm me.
Like you, I try to enjoy a pretty day. I go outside and walk a little. While food isn’t what it used to be (I’ve lost thirty pounds) sometimes I can eat. I know others are suffering too, perhaps more than me.
I go to my various health therapies with little to no improvement. The tools are not right, but people want to help.
Happy New Year, and God help us all.
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2 Reactions@ericy210 How do you find a long covid clinic?
Ericy220
Your recovery after several years is wonderful
I agree Mayo is the best. When I went both the clinician and I felt I was headed for recovery so we didn’t need a plan. Unfortunately I was not in recovery and it was a temporary lull. You credit less symptoms to your plan, can you tell us what your steps were to get there and thanks for the encouragement
..thought about that but (tentatively) rejected it because my symptoms continually evolve and change
Space aliens?
So sorry to hear all these problems you're having.... be persistent with your doctor about getting on some medications that will help you.....you have to be very persistent these days or the doctors will just dismiss you....Sad but true....sounds like you could use an anti-anxiety medication, an appetite stimulant med, and a medication for the dizziness. Best of Luck to you.
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1 ReactionBelieve me, I have been down all these roads. over two years I have seen more doctors, and tried more therapies than I can count. One or two appointments a week for a couple years really adds up!
Anti-depressants have been suggested (and tried) since the very beginning. Thus far, none have helped me, and side effects only made me feel worse. I now am a patient with an Integrative medical group that I feel may help me. Vitamin infusions seem to be giving me some strength and appetite. I have very low dose Klonopin that helps anxiety and sleeplessness on bad days.
I am new to this program so cannot say I have found the answer, but I continue to strive to overcome the challenges. I don’t like the “new me” but I’m trying to adjust.
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2 ReactionsHi Ericy, your post resonates with me - very similar to things I have felt and written. My life has changed completely since 2020. Covid does neurological damage and the hippocampus is a target. My initial covid symptom was amnesia (likely a focal seizure). A few weeks later fatigue, nerve pain, brain fog. Doctors had no clue. Then I felt fine. Years later, rapid weight loss, brain fog, and most recently - more serious seizures and now an Epilepsy diagnosis. I’m not the same person. Getting a good clinical team together is important - doctors that believe you, take an interest in whatever strange symptoms you may have, and are keenly motivated to help. It also helps that as we learn more about Covid, doctors are more likely to have seen whatever it is you have before.
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1 ReactionAppreciate your testimony but you can not get LC from a booster/vaccine. I mean if you can exlain the technical way given how the vaccine works that can be true, I am anxious to listen, but nothing I've read attributes long covid to anything other than a reaction to actually being infected with the virus itself. I mean did Mayo doctors specifically tell you you got LC because of the booster you received? The covid vaccines do not work the same way as others and why I would be interested in anyone here elaborating how LC can evolve from the vaccine...I wish you well in striving for a complete recovery...