Longcovid Lymphatic Dysfunction

Thank you for this. I did not know there was a long covid index test with inflammatory indicators. What type doctor does this test? I am sorry you are battling these lympatic issues and I hope they go away soon. God Bless.

I developed Covid in late June 2022. It was fairly mild, fever, cough. Cough lingered for a few weeks. 3 weeks after I tested positive for Covid my feet and ankles started swelling. Icing and elevation didn’t improve. The swelling moved up to my calves in a few weeks. In August it also included my knees. I was diagnosed with lymphedema in lower extremities in September by my primary care doc. She referred me to Space Coast Lymphedema Clinic who confirmed the diagnosis. I was treated there for a few months until the Lymph Press was approved by my insurance. I used it every night to manage the edema. I’ve also had lymphatic drainage massage there. It’s a chronic condition.

I'm thinking I'm doomed by a rural healthcare 'desert' I retired to, because, 'Long Covid'.

After at least one but likely two cases of COVID beginning December 2021, I have 'a list of symptoms' - the most bothersome and disconcerting to me being, 'LYMPHATIC SYSTEM INFLAMMATION' that cycles on 'a continuous sinewave' of 'expand and contract' for a minimum of the past 10 months (today is June 23, 2023). I'll use a scale of 1-10 to describe a range of severity of inflammation in my 'under jaw lymph nodes' with '1' being 'no inflammation' to '10' being 'maximum expansion possible' (meaning to me, they all seem to be distinguishable by touch, very firm/hard, and maximum inflammation experienced 'during my lifetime' from any cause including strep throat, etc.). So, every daily 24-hour cycle my neck nodes expand and contract from a '2 to 8' with '10' maybe every 36-48 hour cycle-period. They are never, a '1', anymore Early on, I thought it was 'only' my neck nodes that were swelling (accompanied by my 'other symptoms' which included and continue, still: chronic fatigue, vertigo, brainfog, runny nose, heart palpitations/arrythmia, general malaise and severe insomnia (since improved after experimentation with various methods ending in mega-dosing with OTC melatonin)). After a few months and efforts at trying to be attuned to everything going on with me regarding the variety of 'issues' I seemed to be experiencing, I noticed that a few other 'bodily discomforts' just happened to be 'adjacent' other lymph nodes of my complete lymphatic system. For example, I found myself having to 'adjust my testicles' when 'sitting' because they seemed to be 'getting in the way' and 'I could not kneel on my knees without using special kneepads' due to 'excruciating pain' that felt like needles being jammed into my knees if I tried to kneel - and so I began monitoring how 'those' synchronized with my neck nodes expansion and contraction and found 'synchronicity'. Research on 'inflammation' led me to try using 'NSAIDS' (mega-dosing) for a few days in an attempt to reduce 'inflammation' - and see if that helped 'anything'. It seemed to, but luckily I also read that if continued, 'it'll kill you' if you overdo ingesting NSAIDS/Aspirin, so cannot continue that regimen. After being pretty much 'housebound' by it all, I finally got to a 2nd appt with a primary care doc, who (to be understated), seems incapable of helping me, whatsoever, to-date. I did have 'lab tests/bloodwork' which came back normal, including the addition of a 'cancer screen', due the 'chronic inflammation' of lymph nodes. I intend to continue persuing, which is requiring me being 'assertive' and also finding another 'primary' I will visit in a couple of weeks. I would love to know if anyone else has experienced a similar issue with their 'holistic lymphatic system'. ALSO, from my own research of medical research, investigations and literature including from 'numerous respected sources', it all has me wondering if my 'BRAINFOG' might be attributed perhaps to 'lymph nodes' within in my skull, possibly 'inflamed and pressing on brain' during this 'continuous ongoing sine wave of expansion/contraction'. Anyone? Also, at this point, I am considering selling my home and relocating back to 'some metropolitan region' where I previously had access to 'good healthcare infrastructures', because I do not have that 'luxury', where I currently reside.

P.S. - I was vaccinated and boosted when I got infected and took a test in December 2021. I suspect I had a second infection around September 2022. I am a 67 year old male, otherwise healthy as a general rule and 'fit' until recently.

I just discovered an article related to similar condition - which I cannot post the link due 'Spam Controls' but one may find using internet search for:

Researchers identify type of long COVID with persistent inflammation
Mary Van Beusekom, MS
June 13, 2023
COVID-19

Within that news article is the following section:

Possible role of anti-inflammatory drugs

The researchers said the inflammatory markers identified in long-COVID patients are similar to those observed in autoimmune diseases such as rheumatoid arthritis, another inflammatory disease.

They said that patients with non-inflammatory long COVID may have permanent organ or tissue damage that would require very different therapies than those with lingering inflammation. Because these two groups can't be distinguished based on only symptoms, patients would need to be screened to determine which type of long COVID they have before prescribing any anti-inflammatory treatment.

"Certain kinds of anti-inflammatory drugs might alleviate symptoms for some long COVID patients," senior author Troy Torgerson, MD, PhD, said in an Allen Institute news release. "But physicians need a way of telling which long COVID patients might benefit from which treatment—a form of precision medicine for a disease that so far remains maddeningly mysterious.

...annnd from a Press Release for that piece...

News Release 12-Jun-2023
Many long COVID patients suffer from persistent inflammation, study finds
Molecular footprint of the chronic condition could help guide clinical trial and treatment decisions
Peer-Reviewed Publication
Allen Institute
An overactive inflammatory response could be at the root of many long COVID cases, according to a new study from the Allen Institute and Fred Hutchinson Cancer Center.

Looking at proteins circulating in the blood, the scientists found a set of molecules associated with inflammation that were present only in a subset of patients with long COVID and were not seen in those who recovered from their disease. The researchers published an article describing their findings in the journal Nature Communications today.

Out of 55 patients with long COVID, about two-thirds had persistently high levels of certain signals of inflammation. The scientists also looked at blood samples from 25 people who had COVID but recovered, and from 25 volunteers who had never had COVID to their knowledge. Those without long COVID did not show the same signs of inflammation in their blood.

The patient volunteers in the new analysis are part of a larger, ongoing study based at Fred Hutch, the Seattle COVID Cohort Study, which is led by Julie McElrath, M.D., Ph.D., Senior Vice President and Director of Fred Hutch’s Vaccine and Infectious Disease Division, and Julie Czartoski, ARNP, Research Clinician at the Hutch.

Scientists have seen previous links between inflammation and long COVID, but the new study is the first to trace the persistence of these inflammatory markers over time in the same patients.

There’s an obvious implication to these findings, said Troy Torgerson, M.D., Ph.D., Director of Experimental Immunology at the Allen Institute for Immunology, a division of the Allen Institute: Certain kinds of anti-inflammatory drugs might alleviate symptoms for some long COVID patients. But physicians need a way of telling which long COVID patients might benefit from which treatment — a form of precision medicine for a disease that so far remains maddeningly mysterious.

“The big question was, can we define which long COVID patients have persistent inflammation versus those that don’t? That would be useful in terms of clinical trial planning and in terms of helping clinicians figure out targeted treatments for their patients,” said Torgerson, who led the Nature Communications publication along with McElrath, Aarthi Talla, Senior Bioinformatician at the Allen Institute for Immunology, Suhas Vasaikar, Ph.D., former Senior Bioinformatics Scientist (now a Principal Scientist at Seagen), and Tom Bumol, Ph.D., former Executive Vice President and Director.

Specifically, the blood markers uncovered in this subset of patients with “inflammatory long COVID,” as the scientists call it, point to a flavor of inflammation similar to that seen in autoimmune diseases like rheumatoid arthritis. This kind of inflammation can be treated with an existing class of drugs called JAK inhibitors, at least in the case of rheumatoid arthritis (it has not yet been tested for long COVID).

The scientists also hope to narrow down their molecular signature of “inflammatory long COVID” to a few markers that could be used in the clinic to sort this subset of long COVID patients out from the rest.

Refining treatment options

Launched in the spring of 2020, shortly after the COVID-19 pandemic shut down businesses and schools in the U.S., the Fred Hutch-led Seattle COVID Cohort Study was originally designed to follow immune responses over time in patients with mild or moderate COVID. The idea was to capture details of a “successful” immune response — one in which patients didn’t get too sick, didn’t need to be hospitalized, and recovered fully.

But the team soon realized that even among those who didn’t get super sick, not everyone recovered. In their initial work in 2020 tracing the details of immune responses in 18 COVID patients, the scientists found a handful whose symptoms persisted, early examples of what would eventually be termed long-haul COVID, or just long COVID.

In those early days of the study, the scientists saw that certain immune responses — namely inflammation — were consistently high in these few patients with long COVID. In the patients that got sick and then recovered fully, inflammation levels went up as their bodies fought off the illness, and then went back down as they got better. In those with long COVID, the levels never went back down.

So the team decided to expand their study to look at more patients with long COVID, focusing on a panel of 1500 proteins circulating in the blood. These assays revealed different molecular “buckets” of long COVID, namely inflammatory and non-inflammatory long COVID. Understanding the molecular roots of the disease, or subsets of the disease, will help guide clinical trial design and ultimately treatment decisions, the scientists said.

“The ultimate goal is to treat patients,” Talla said. “Although we call everything long COVID, what’s come out of this work shows us that we might not be able to give everyone the same kinds of therapies and we shouldn’t put everyone into one group for treatment purposes.”

Those patients with non-inflammatory long COVID might be living with permanent organ or tissue damage from their disease, Torgerson said. That would require very different treatment from those with high levels of inflammation. The scientists also saw that these groups can’t be distinguished based on symptoms alone. If anti-inflammatory drugs prove effective in treating inflammatory long COVID, patients would first need to be screened to determine which form of long COVID they have.

“We hope these findings provide features of long COVID that may guide potential future therapeutic approaches,” McElrath said.

I got the best results from a doctor run holistic group.
only a few supplements and most of my symptoms are gone after 2 months of treatment

I take a few supplements (Vit D3, B12 plus Zinc, Melatonin) and mine persist.

Oh yeah, I was diagnosed with ADHD in my 50's so 'on and off' have been prescribed Adderall (started, stopped, re-started) and if it weren't for adderall and a lot of espresso shots, I'd be confined to my bed, recliner and house - 'still' - as I was for most of the past 10 months. Now at least, I manage to get 'a bare minimum' accomplished while living alone with no support. And, my 'shrink' also added in propranolol post-long-covid-self-diagnosis which appears to temper my 'periodic' heart palpatations/arrythmia. He's actually been more helpful and 'considerate'/creative-thinking and interested' in my plight than the 'physical medical people' consulted, to-date.