Yale Paper: Long COVID/ME/CFS

Thank you for sharing this and I do think it is relevant to share with our doctors who are confused by the constellation of symptoms we present to them. This part of the article especially stood out to me:
"Importantly, according to Pollack, ME/CFS and Long COVID commonly co-occur with a group of other overlapping conditions, including postural orthostatic tachycardia syndrome (POTS), small fiber neuropathy, mast cell activation disorders, connective tissue disorders, and reproductive health conditions. Pollack recommends that both researchers and clinicians screen for co-occurring diseases in those diagnosed with ME/CFS or Long COVID."
I would add that the reverse also be done, people diagnosed with the mentioned overlapping conditions be looked at for a diagnosis of ME/CFS or Long Covid because that's where I think things get stuck in the medical community.

Agree. It was why I sent this to the many doctors I'm seeing and will see. It has been the most frustrating 13 months, even besting (worsting?) my NHL diagnosis years ago. THAT they could find and treat. This is just stunning and I've only dealt with it for 13 months, not years like many.

I live in DC where we have no Senators and a Congressional non-voting delegate. I encourage all who are among this group who see this to write in your states and to your Fed officials that this is a critical issue to fund for research and treatment. It impacts every aspect of life.

I found this article fascinating and self-descriptive - I had CFS (diagnosed by Mayo) in the late 80s, have Long Covid, and have recently been diagnosed with borderline POTS. I am currently taking Mestinon for the POTS. This medication worked like a miracle drug for 5 months and now, I'm back with the same ole symptoms....SOB. fatigue, PEM big time, dizziness, etc. Mestinon has obviously stopped working for me. My neurologist is getting discouraged, as am I. I know that Pacing is the name of the game for now but I miss my very active life so much.

I'm not sure where to turn which is how my doctors feel, too. I just had another EMG - normal and will have a stress test in a few weeks.

Keep the information coming. This site alleviates my feelings of fighting alone.
Thanks.

I gave you a 'hug' and it's not enough. I feel your pain, literally and figuratively. Today, I was fitted for lymphedema wraps, that took 11 months after contracting COVID to be diagnosed even tho I had multiple hospital and doc visits showing them that my legs were not "my" legs any more. Could it have been alleviated or curtailed if suggested sooner? We'll never know.

I'm just exhausted from going to doctors and getting stuff to treat symptoms and no one doing more.

So yes, this site and the ability to at least see and send to doctors what we're finding is the only way I can attempt to cope.

Thank you!!

I, too, have been suffering (since 12/2022) from post Covid lymphedema…. Ankles, legs, hands, arms and likely head as well. No one seems to able to do anything but try to treat symptoms (leg wraps, compression socks and gloves, etc.)
I recently began homeopathic treatments… expensive but hopefully will show positive results.
I also have been accepted into a clinical “wearable device” long Covid study with Scripps in California. I’m keeping as proactive as possible. You are the only other person I have encountered with long Covid lymphedema. Hopefully we’ll get some positive way of attacking the cause.
Homeopath has found high titers for Epstein Barr virus. I will be getting IV ozone to treat that.
Good luck to you. I will share and results when I have them

AND this is just it - there is no repository for all the different symptoms to be collected. Here, we share. Other groups too no doubt. And it's by chance we find another who has 'our' symptoms -- which helps because at least when doctors and others roll their eyes, we an say there is at least one other person.

How might I learn more about the homeopathic treatments you are undergoing? So far all I have (just this week) are the leg and feet compression devices - my hands are too arthritic to pull on compression socks. I tried wearing leg and feet all day yesterday and thought it was far worse by last night than otherwise. Today, just leg wraps.

Was your lymphedema associated w/ rashes at all? Any cracking of skin on your feet? (Mine is on the bottom of my heels and is miserably painful.) The residual impact of one of the rashes resulted in so much pain on my right leg that walking has become a challenge.

Re Epstein Barr virus: it's on my list of issues for any of the doctors I'm seeing to test, and for my conversation next Fri. w/ the Georgetown Univ. Hospital COVID clinic.

Thank you so much for responding. It's oddly soothing to know it's not just me.

For the record, I’m Keith!
My symptoms of lymphedema began a few days after my Covid bout ended in early 12/22. My case was relatively mild… treated with Paxlovid and tested negative after day 6.
Since my hands were swelling as well I also have great difficulty with putting on compression socks. I now have Sigvaris Velcro socks (and gloves). Also have a pair of generic zippered compression socks.
As an aside, am I the only other lymphedema Covid person you’ve encountered?
As to homeopathy… last summer I was seeing someone who tried very hard with no positive results. For 18 months I’ve been getting once a week lymphedema massages and bandaging. Only small modicum of relief there.
On 4/17 I started to see a new and highly recommended homeopath. He exudes confidence… and by extension gives me some hope.
He had me get bloodwork at a Quest diagnostics here in Las Vegas. Most of the results were well within the Quest normal range. Not nearly normal for the homeopathic practitioner.
I have stuff going on with Cysteine, Dhea, vitamin d, and about 9 or so other things.
My titers for Epstein Barr virus were elevated and he wants me to get intravenous ozone treatments for that.
I am also getting subcutaneous shots of Helleborus… think it’s for swelling.
He has requested dietary changes (eat for my blood type). I have been unable to begin the diet regimen as I just began implant surgery for a tooth… so soft food at room temperature or colder for a while.
The good news homeopath wise is I have seen a tiny bit of improvement ( I had sores in my mouth from lymph swelling of face… they went away). Also my knee joints had been very achy… now the pain is under a 1…. Used to be 4.
I’m certain there’s bunches more to tell. Next missive!
Keep in touch, please. Hopefully something I’ve mentioned will assist you on your recovery.

Keith

Hello!Can I ask you if your deha was high or low.My upper arms and thighs are huge and inflamed.It feels like Marshmallow State puffman when I walk.I can barely walk and was so healthy before all this came on.I also have high epstein barr titters.I know covid can reactivate that.I was just asking you about the deha because mine is really low which would mean Addison's normally,but I have gained a ton of weight ans have high blood pressure.Addisons is weight loss with low blood pressure.They tested for cushings disease and it was negative.I think covid attacked my adrenal glands.I know it can attack everything,but I am trying to figure out what might possibly help.I have low testosterone too.

Hi:
My DEAH is low, as is my testosterone. The latter can be expected as I’m 78 years old. Homeopath treating me for both.
In my quest for answers to lymphedema I have seen a cardiologist, an orthopedic hand surgeon, a neurologist, a rheumatologist, my hematologist, my PCP, the aforementioned homeopath, a vein specialist and of course my 4 day stay at Mayo Clinic Rochester this past January.
Nothing positive to report yet.
I hope you can find help.