Post-COVID Recovery is a Paradox

Have you been referred to a long covid recovery clinic to see if they may have answers for you? I hope you can get into one and they can help you. I go next month. I know, you are correct, it is a paradox. We are all in this together and trying to help each other. Don't lose hope.

So sorry you feel that way. Our pastor says Hope is the human oxygen of the soul. Sounds like you’re giving up hope. I’ve been dealing with long covid for a year now. I am determined to be my own patient advocate, requesting the tests, supplements, and things that I feel may help, like PT. Everybody seems to have different sets of symptoms, but there are generally more than one. I keep praying for wisdom and direction for the next step in my recovery. I have found a Post Covid Recovery Practice locally. They opened up a year ago. I found out about them from my niece at a graduation party. First appointment was phone interview, answering lots of questions. Second appointment was with a nurse practitioner who followed up with questions spun off my previous interview. Answers are inputted into a computer program. She recommended a few tests to address the shortness of breath on exertion, which is my biggest concern right now.
Don’t give up.

I'm 'out of the parameters specified by MAYO' for that and none within a few hundred miles of me

Understood. It is truly a long haul . I’m 2 1/2 in to this...
BUT fighting like hell to find my own cure. Trial and error...dr after useless dr...normal tests, 20 supplements, exercise when I can hardly move...but determined to make today better than yesterday!

rmca | @rmca | 3 days ago
A layperson’s explanation of the dilemma as a long hauler advocate…
Two and a half years later and too many in and out visits to physicians who informed me my tests are normal, I remain placed in the boxes from medical schools that call neuropathy neuropathy and fatigue fatigue. Every other symptom post Covid retains a familiar label with either standard treatment to address the issue or no treatment at all because the contamination by Covid prevents an out of the box approach.
This is understandable, save for the fact that providers are unaware of up to date research findings and really appear to be too overwhelmed to re-educate themselves. It appears easier to pass patients down the line to another “specialist” who might be curious enough to go the extra mile.

Numerous research articles have suggested presenting the information on their visits. Personal attempts have failed to ignite the interest I had hoped to receive and it’s rather professionally shameful.

So, as I have viewed on internet long hauler interactions, it’s self advocate, do your own scavenging for current information and hope that you are lucky enough to happen upon articles like, “A Review of Cytokine-based Pathophysiology of Long COVID Symptoms.” This particular article was so comprehensive and validating regarding my own discovery of cytokine over-expression as most likely a main culprit in all that is insanely occurring since the invasion. Now I am cytokine obsessive. I am concentrated on discovering all I can to address my current and unending issues…but definitely way ahead of where I was 2 1/2 years ago when I contracted Covid.

As an example, I am currently using the research on famotidine (Pepcid) as a cytokine calmer, if you will. I will do this for two weeks to see whether or not there is any impact on symptoms. With this example, I also state that no one should follow anything I say without approval by their doctor. I am just not willing to wait for any doctor I have seen to catch up with me. I will continue to book appointments with new doctors as I regularly do to see whether or not they reached the point of thinking out side of the box of med school labels and into the virtually unknown Covid realm that might in fact offer some newer insight regarding the symptoms of the moment. Permit me to fantasize for all of us and imagine the fatigue…the worst of the worst…. has found a cure!!! Meanwhile, I don’t do coffee, but a can of V8 Energy 10 cal drink amazingly kickstarts my day and I move and function. Woman’s got to do what a woman’s got to do!

All of my bazillion tests are normal. I am not on any medications. BP normal. Blood sugar normal. Cholesterol normal.
Covid residuals:
tingling and numbness in lower legs,
bottom of feet (awful) BUT no
pain they talk about with non Covid
neuropathy
Weakness in legs
Equilibrium issues
Osteoporosis onset post Covid—-
research supports causation
Bursitis/tendinitis- onset post Covid
(horribly painful)
Extreme phlegm, constant runny nose
Attacks of itching and hives (in remission
since famotidine—common
usage as an antihistamine. My focus on
cytokine involvement and
famotidine outside its own
“box”….aka…off label).
Problem is that doctors are too susceptible to using age as a framework for treatment. We don’t all fit in the “old age” box.

I take 20 plus supplements that I have incorporated as I discovered their affect on Covid issues and inflammation. Whereas I was virtually non functional in the early months of my Covid experience, I am functional with my symptoms. I exercise daily. I was always an avid (obsessive) exerciser …weightlifting daily 10, 15, 20 lb weights. I have to moderate now, but am determined to keep doing the repair work. It’s horribly frustrating at times but I’m a firm believer that you are your thoughts. “Think lovely thoughts” and get in gear to make some kind of progress today. Doesn’t have to be big.

If nothing else for the day, read the article I mentioned earlier, “A Review of Cytokine-based Pathophysiology of Long COVID Symptoms”. Just Google the title. Or give it to your doctor.

If you can get them to do a cytokine panel it might just reveal useful information for calming the out-of-wack cytokine levels. Should be a standard test by doctors seeing long haulers. Ya think!! There are meds to treat and natural supplements. I do the later….curcumin, piperine , plus the famotidine.
One trick…keep moving. To the mailbox and back is better than laying in your bed day after day. Move it. Undepress yourself with hope.Negative thoughts rob you of your abilities to get done what needs to get done.

I try and practice what I preach. It’s really difficult at times..But I’m giving it my best shot. Don’t permit tomorrow to be the same as today. Make it better for yourself.

I've been working at the 'keep moving' part (pretty much in synch with my now-routine sine wave of energy/fatigue/vertigo/inflamed lymphatic system expansion-contraction model-of-life) so 'stagger down a sidewalk and around a few blocks' every day or two and get outside to do a little light yardwork and breathe some fresh air but need to keep remembering the only reason I seem to be able to do THAT much is because 'daily 60mg adderall', also (for me). I've been a lifelong 'optimist' at heart - successfully overcoming significant odds and opposition on various and sundry life-events, yet, scenarios I run in my head on 'this one' have me reduced to 'sell out and relocate to some metro region with decent healtcare infrastructure' or 'screw it, turn on the TV and binge watch until I just fade away...' Like you, I've been a lifelong 'fitness afficianado' and healthy eater, active routinely and outside 'doing something' up and down ladders, landscaping, swimming, working out, hiking, playing, yada... until covid tossed a wrench into my gears with 'multiple symptoms at odds with the standard checklists plugged into the system - plus malaise' - after retiring to a 'healthcare desert' where the only thing I can be assured of is repeated efforts to give me colonoscopies and labtests every 6 months and then send me on my way until the next 15 minute office visit because 'everything is normal!' see you in 6 months. NEXT! I am asserting myself to get what I'm getting - and every damn thing is like prying a tooth from the monster called 'Healthcare'.

Man-o-man do I understand you! But after fighting this insanity for two and a half years and moaning through it, I have saved my own life thus far. Not one doctor I have seen has helped because they don’t have any answers....and none of them use an open mind for holistic approach. That’s probably where the answers are but they are probably waiting for a long hauler vaccine. Keep taking those those walks and if you think moving will find a better healthcare situation ....not sure about that. As for long haul clinics ...unless they have tapped into the research they are just mental bandaides for making you believe they might help. The truth be told. Johns Hopkins is probably worth the trip. So if you move do so near a place that is proving they are forerunners in this. I spend my time pushing myself out the door to the store....speed walking on the treadmill....and downing Gabapentin for nerve issues. I do not take any meds so this will be a short term trial. I rely on supplements that have been touted in long haul research. I am way ahead of where I was 2 and a half years ago.
Choose to use the day to stop and smell the roses...Yep, we got a real jar to our schedule, but we can fight it...

Yeahhhhh..Re: Relocating - based on everything I read on this 'entire site under the Post COVID Recovery Board', it does appear it'll be a crapshoot. However, if I 'never mention the word COVID' and focus on 'complaining about a few key symptoms' I might have better luck - but again - still outside my region. We have no 'Immunologists' and I need one, based on 'my research' of 'everywhere' - today finding 'Immune Deficiency Foundation' and long-story-short the one symptom sending me to 'IMMUNOLOGY' for ALL Specialties, is my 'persistent, chronic swollen Lymph Nodes'. Despite repeated requests to be 'REFERRED' to a 'SPECIALIST' my 'PRIMARY' is MILKING ME FOR MONEY (me and insurance) and clearly so. I'd get more colorful on the subject but... 'Terms and Conditions' apply, here. Suffice to say, he isn't qualified to help me - he knows it - I know it - there are no Immunologists within commuting area - there is one (1) in a 200 mile radius - and my guy REALLY MUST CONTROL every appointment, never asks why I made the appointment but enters the room and jumps right into a laundry list of 'Things appropriaite to my Age and Gender, pushing 'Income-Producing' products for 'The Practice'. I mean, it doesn't take a genius to deduce this but since I am actually a genius with decades of experience in 'Analyses' as well as Sales Training, Business Management, Marketing, etcetera, it's impossible to miss what's going on here, in my case. 'Analyses and Research' is the foundation of this board, after all, as evidenced by 37 pages (presently) of topics and discussions with sub-content within each. Nobody is coming to save me and everyone 'out here in the physical world I have any contact with related to this matter' are a combination of doubters, deniers, avoiders and grifters. One can 'pray' and have 'faith' all one wishes but the fact of the matter is that only testing and elimination and deduction and analyses is going to get me where I need to be - and 'all of that' will require resources that are 'Ready, Willing and Able' to support. Therefore, one will either seek then find that 'Collective Combination' and facilitate their own cure (or inability to cure) or, one will fail to satisfy all facets of 'The Combo required for The Cure', therefore relegating oneself to 'whatever nature has in store for them'. This is the 'BLUF' (Bottom Line Up Front) for all things, 'Post COVID Recovery'. I ain't going to be able to fix this problem on my own, for a change. Hence, honest reflection and realistic expectations must be level set. I may get lucky and find a doctor who is sympathetic (oh, how I'd love that) and willing to prescribe some medication that addresses 'some symptoms' (like, 'Inflammation', for example). If I find the motivation to 'continue making calls and searching internet and extending range I am willing to travel and fund extended stays (e.g., hotels, restaurants, fuel, flights) while experiencing 'malaise' and 'fatigue' and then the matter of 'limited available funds' is another factor influencing my own initiative and motivation and reducing my ability to be, 'Ready, Willing and Able' to pursue the goal of improving my own health in a healthcare desert region of a national healthcare system failing to establish the infrastructure and support environment necessary to do so, for 'legitimate 'Post-COVID-Recovery'. I don't believe in unicorns nor can I 'tra-la-la' my way through it on 'faith and prayer and advice of pastors or priests'. So let's be real. I'm experimenting as much as the next guy/gal on this board. I'm as driven as the driven. But, you know, all things are not-equal for all 'the afflicted'. There will be, should be studies on 'How Many Committed Suicide As a Result of a Failure to Receive Care Related to Long COVID'. Miserable, desperate, broken, lost hope and determine for themselves there was no way out and the best option left to them. (Do not follow up with me on this and inquire if I need help - I do not - but clearly many others will - and/or could have benefited by now from actually getting some. Just read the board - and between the lines - it's easy enough to find the sentiment when one knows what to look for and 'listen to'.) Meanwhile, I'ma go have another espresso...

So Sorry you are running into all these problems. I wholeheartedly agree with you. I am running into a lot of deniers and I am very anxious, depressed do to all the changes in my life. I did find a fatigue center in Edmund, Oklahoma that takes my insurance. I you are in this state, it might be worth a try. I will be traveling there to see in the future. I am no longer working, I retired early which is also anxiety producing as this was not our plan and don't know if we are ready for it, but I can no longer work either...
praying for you, please hang in there and find the help you need. An espresso sounds good!

I went to a doctor who was supposed to have a long covid clinic. He told me that my problems could be due to my diabetes, offered me a new inhaler for my SOB, which did help. told me that if I return, it is not covid....
And it was only him, not a support system I was hoping for. Hope you have better luck.

Your article has me interested in the inhaler you are using. I too am diabetic and had covid last Sept. I still have times when I get exhausted and times when I can walk 3-5 miles. My PCP has no answer for me. I'm looking for something that might be of help to me.
I'm looking into hyperbaric oxygen therapy. My cousin lives in central FL and has looked into Aviv research. Will keep you posted, good luck to you.