Post-COVID Recovery is a Paradox

YEP! Jesus, Prayer, Supplements, Exercise, YadaYadaYada... 'JESUS!' EVERYBODY GOT THEIR CURE and family just tells me, "Well, you LOOK marvelous, Mitch!" I've got a counter full of supplements, have people who pray for me (and yeah, even I have prayed for myself), I only get exercise if I take a load of AMPHETAMINES (Adderall Rx for my ADD/ADHD-so legit), have a truckload of FISH OIL due Monday morning (because ER doc actually mentioned it for inflammation so... using up the last of my supply now but 'no change yet), and B-Complex, D3, ZINK, Magnesium, Potassium, Melatonin... 'LOL' They want too cut into me and take a BIOPSY of my lymph nodes. Sounds very, very dumb, to me. WON'T / CAN'T order 'IL-6 (Interleukin 6) Test because 'not in their swimlane' - but it seems that's one of those tests that's going to give me the 'out-of-range' results I know I'm looking for - and for which 'IMMUNOLOGISTS and RHEUMATOLOGISTS' use for 'Followup ACTION' - and I know (because investigation/research) there are actually DRUGS PRESCRIBED for these things, by THEM. That's all I want - test me - try some drugs - see what happens - without some idiot cutting into me because, 'WE DON'T HAVE IMMUNOLOGISTS TO DO THE LOGICAL STUFF'. GAHHHHHHHHHHHH. They don't HEAR me - because NOT A DOCTOR and they seem determined to ensure I KNOW THEY ARE THE GATEKEEPERS. So. Scenarios to get to immunology department, somewhere, somehow... I'm at the 'LOL' point because all I get is 'BLOOD PRESSURE and COLONOSCOPY or COLOGUARD at every. Damned. Appointment. I haven't fired him yet because he's my own entry to the local system beside ER and I might need him for strep throat or a broken bone, sometime. 😉 Cheers.

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.

rmca,
Thanks for your post. I have had LC since Feb 2023 with symptoms getting worse and new symptoms arriving thru these last few months. I have read and watched every presentation I could find on the topic of LC --not only the clinical researchers in the large medical centers but also what naturopaths have to say on the topic of recovery from LC. My LC has slowed down as long as I take it easy and stick to my plant based diet and don't push any kind of exercise or exertion.
I was intrigued about the information I found on Cytokines -- low levels and the cytokine storms. I found an article interesting that is on the University of Utah Health and is titled: STUDY PROVIDES NEW CLUES INTO CAUSES OF LONG COVID SYMPTOMS. Sorry I could not post a link because I am fairly new to this forum.

I recently ordered a product that I am hoping will help. I also am using lots of natural herbs / supplements to manage and hopefully take care of the symptoms. This is the product I am using: The HomeGrown Herbalist Respiratory – Cytokine Balance Formula tincture. The ingredients are: Ingredients: Grape Leaf, Turmeric, Garlic, Ginger, Milk Thistle, Skullcap. I already eat lots of garlic and ginger so hoping this formula may help even more.

Your determination sure sounds good to me. I was at the place you seem to be at…and by doing what you are doing to have made extreme progress. I don’t know. What your symptoms are, but I can tell you I am totally functional dealing with the residual symptoms…the fatigue being the worst and some others that are rather bizarre. But I’m convinced if I get the cytokines/histamine under control then I will be good to go. I will read the article you suggested. I don’t stop reading and researching the subject. Im on basically all the supplements you mentioned plus about 25 additional ones. Again all my tests are normal…which is good news. But I have to get the cytokine craziness conquered. Most of the doctors don’t pay attention to the things we are discussing. But your holistic approach , I believe is where the answers are at. I hope your body is in a speedier healing mode than mine, but don’t slow down in beating the attack…2 1/2 years into this, I’m dedicated to saving my own life. Im not intimidated by any doctors. I know myself and what I can do. I hope you incorporate some form of exercise. You don’t have to”push it” but you do have to move even if it’s a walk around the block. I go nowhere without my mask. I am totally paranoid about getting illness let alone Covid again!!!
Wishing you well….Hoping for good news you can share with all..

rmca,
Thanks for your post. I have had LC since Feb 2023 with symptoms getting worse and new symptoms arriving thru these last few months. I have read and watched every presentation I could find on the topic of LC --not only the clinical researchers in the large medical centers but also what naturopaths have to say on the topic of recovery from LC. My LC has slowed down as long as I take it easy and stick to my plant based diet and don't push any kind of exercise or exertion.
I was intrigued about the information I found on Cytokines -- low levels and the cytokine storms. I found an article interesting that is on the University of Utah Health and is titled: STUDY PROVIDES NEW CLUES INTO CAUSES OF LONG COVID SYMPTOMS. Sorry I could not post a link because I am fairly new to this forum.

I recently ordered a product that I am hoping will help. I also am using lots of natural herbs / supplements to manage and hopefully take care of the symptoms. This is the product I am using: The HomeGrown Herbalist Respiratory – Cytokine Balance Formula tincture. The ingredients are: Ingredients: Grape Leaf, Turmeric, Garlic, Ginger, Milk Thistle, Skullcap. I already eat lots of garlic and ginger so hoping this formula may help even more.