Post-COVID Recovery is a Paradox

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...

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.

Good grief. Nightmare land. I hate to suggest this— (I’m sure you’re thinking: one MORE suggestion?!?) BUT— I’ve tested normal in everything. I do not test normal w/ the in-depth testing an immunologist has done.

Hi there. Can you tell me any more on the part about, "I do not test normal w /the in-depth testing an immunologist has done." ? I'd LOVE to get to an immunologist but there are none within almost 200 miles (actually 'one' about 50 miles, but he's booked, not available w/out referral and my Primary avoiding my request - still). Since I have 'longterm lympatic swelling' but 'all the usual tests are "in range" I can only 'guess' it'll take an 'unusual' test to 'find anything out-of-range'.

Good grief. Nightmare land. I hate to suggest this— (I’m sure you’re thinking: one MORE suggestion?!?) BUT— I’ve tested normal in everything. I do not test normal w/ the in-depth testing an immunologist has done.

Interesting...And if you didn't test normal what exactly was abnormal AND how are they treating it,???
Answers could help a lot of us.
And great suggestion for Mitch with the telehealth!! Long haul clinics would close down if they let the cat out of the bag that we all need to see immunologists. That would monumentally damper profits. Cytokines are the culprit and immunologists or Ruematologists are the specialists. Don't forget what I said about the cytokines...They are over expressing and causing havoc.

The problem with Long Haul is we all have different make-up: different pre-existing, different illnesses( Covid pre-vax, post vax, resulting FROM vax, etc.) different lengths of illness and severity ( some on the chat had very mild symptoms that lasted a few days). THEN, to add to the mess? We’ve all been nailed with different things— I’ve been on this chat for awhile, and have seen symptoms that are opposites: inability to swallow due to excess mucous— lack of mucous causing severe dry mouth. Extreme fatigue— insomnia. Ability to exercise which has re-enervated the body— complete inability to exercise. Long haul is nailing everyone in different ways. Some are depressed or anxious. Some have NO medical or clinic support, others have been thru several long haul clinics. My point is: I could write out several of my abnormal labs, but this is not like strep throat. There isn’t one test, one fix. It wouldn’t help anyone.

Oh boy— gotta say. This is SO not ok. People do not comprehend that there are so many, like you, who have no access to specialists! So, what I meant was that I’d been thru a long haul Covid clinic and had gotten tested for numerous things— and allllllll the tests were Normal. Then I found a good immunologic group, and they’ve done a boatload of tests I hadn’t heard of before. And I looked at my labs… red all over. I’ve never been so thrilled about bad news!
I don’t know if you can, but you may want to look up Mt Sinai NY long haul clinic. They are doing some cutting edge stuff, and having “lymphatic swelling” shouldn’t be brushed off. I don’t know if your insurance will pay for telehealth, or if you even HAVE insurance. But please keep digging. Go online and search the clinic. Call and see if they have financial help programs, or can assist w/ insurance negotiations. Look on CDC or your state gov for assistance w/ medical navigating….??? Shoot. I’m so so sorry.

Interesting...And if you didn't test normal what exactly was abnormal AND how are they treating it,???
Answers could help a lot of us.
And great suggestion for Mitch with the telehealth!! Long haul clinics would close down if they let the cat out of the bag that we all need to see immunologists. That would monumentally damper profits. Cytokines are the culprit and immunologists or Ruematologists are the specialists. Don't forget what I said about the cytokines...They are over expressing and causing havoc.