So glad to see this group

Posted by diverdown1 @diverdown1, Mar 12 10:41am

I have had Long COVID for almost 3 years now and I see so many failures in the medical community as well as mental health. I am also in recovery and talking to people about Long COVID and dealing with the symptoms is isolating. It is like to talking about being an alcoholic in recovery with someone who does not and has never taken a drink. This virus has changed my life as I am sure it has many or all of you. I have finally reached out to a Long COVID clinic, however, I am doubtful they can do anything but treat symptoms. The fatigue with an NSAID. The tinnitus, dizziness, lack of smell and taste in the morning, tingling in the hands and feet, depression, anxiety, brain fog, etc., I have seen nothing for many of the symptoms. I knew 3 years ago that this was what I had. My blood work showed a reactivation in Epstein Barr virus, RA and other strange things, so my PCP referred me to an RA doctor, who, when I told her I thought it was long COVID, rolled her eyes at me. I am hoping to get a call back from the Long COVID clinic, here, near me. I need some kind of relief.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

celia16 | @celia16 | Mar 13 3:21am

I hope you find relief too. I pray that something is discovered that can help us all.

joanland | @joanland | Mar 13 5:48pm

Please keep us posted. I hope you find a good doctor in the clinic.

law59 | @law59 | Mar 15 10:12am

Hi@diverdown1. So glad you also found this support group. Think those of us who have quite a bit of time and various doctors, would suggest pacing and not allowing your body to get tired in any way is crucial to recovery and preventing constant set backs whether minor or long🙃. Know this is very daunting and we are all here to cheer you on to see light at the end of the tunnel! Quickest possible healing to you🌈

CropDoc | @cropdoc | Mar 15 2:05pm

Look up posts in this group on nicotine. Discussions and published journal articles are present. Also look in the group for places with good doctors or successful interactions. Good doctors which seek the root of the problem, daignose the problem, and make some attempt to overcome the problem, in various ways, appear to be 1 in 1000. Maybe it is not that bad, but my 4 years experience has seen two in around 40 doctors or medical researchers (hospital, ER, hospitalist, rheumatology, immunology, ENT, hematology, pulmonology, cardiology, multiple M.D, D.O., P.A., N.P., Covid clinics and Long Covid groups or clinics. I am seeing another, new, rheumatologist and then a neurologist (M.D.) (waiting over a year or near a year for both), and I am waiting on a report from the neuro psychologist (she may be #3 of 40s).

Signing up for Covid related clinics, Covid specialists, other doctors willing to examine the situation, then producing one good doctor which has effective treatment does not give odds of a needle in a hatstack. That is a harsh judgment, but I am sick, tired, and fed up with "that is not Covid or Long Covid", "do not think about it any more", "that symptom did not come from Sars CoV-2, "I am not longer working on Covid", "get used to the new situation", throwing a kitchen sink approach to identification and treatment, snake oils, low probability impact treatments, and so on.

Science is simple: 1) identify causation (completed), 2) examine all literature and information for an "in use" treatment with fair, moderate, or good impact and apply (never started or completed - refering to the entirety of the medical industry in the US and all world regions), 3) examine all like causal sources and identify successful treatments, apply treatment (not started or completed), 4) examine all in-pipeline and testing treatments which may apply (never started or completed), and 5) examine novel treatments (crossovers) which have been approved and are safely in use.

Did any doctor, researxh group, or medical professional in this space have or remember the first weeks of pathology class?

A novel pathogen with a questionable or incomplete source resolution is present.

A novel, unproven, untested (in complete FDA method for approval) against the mass of human population genetics and interactions was approved then applied, in many cases, with force. Not only is the treatment novel, it involves use of unproven impact on humanity, short or long term. There are also multiple modes of application of this system pf treatment (mRNA, adenovirus) which are novel and untested in human medicine which have failed in animal health. The same companies or groups were involved as a whole. The same companies or subsidiaries were involved on the crop agricultural side 25 to 30 plus years ago and now we have genetic transfer to weeds, insects, other untreated crops, and maladies in crop perfomance from germination to handling environmental stress to quality and yield.

Does anyone adhere to science? It appears the only people where those which used an attentuated (proven, long serving, safe) virus application. The efficacy was and is as good as the strain of virus used to treat the individuals to provide protection and has almost no, certainly no significant, side effects. Adverse events are almost nonexistent (allergy response).

Here we sit in the quagmire of ignorance.

diverdown1 | @diverdown1 | Mar 16 1:13pm

Agreed. I had to get pretty aggressive with several doctors in the beginning of all this. I had a rheumatologist roll her eyes at me when I told her I thought it was Long COVID. I called her out on it. This was 2 years ago. I just tried to get into the Vanderbilt Long COVID clinic, but have no insurance. I was pretty much told that I would see a PCP and get referred to a specialist...Rheumatologist, neurologist, cardiologist, etc. So, that was not helpful. I was asked about joining a clinical trial involving Paxlovid. I do not want to be a guinea pig. There is a way to find out how to help all of us...here's hoping. I am tired of it as well. This has completely changed my life.