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Yale Paper: Long COVID/ME/CFS

Post-COVID Recovery & COVID-19 | Last Active: Jun 1 1:36pm | Replies (26)

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@kgatlast

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

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Replies to "For the record, I’m Keith! My symptoms of lymphedema began a few days after my Covid..."

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.

AH! Keith, thank you and apologies for not replying sooner - easier at my desk on a full keyboard v. phone. And I'm Joan, btw.

Yes, you are the only other person of whom I've read or heard who was diagnosed with lymphedema after having COVID. Have you, through your journey, met others, or heard of others?

You are much further (or is it farther?) along than I in treatment and journey. Thus, I'm grateful for your sharing experiences. My doctors - including the initial ER visits - ignored what I was saying. I'm fat so I'm sure they all thought my leg swelling - tho' I explained I'd never had it pre-COVID - was my body not COVID. (Ah biases toward women of age and size!)

Still no one is investigating the strange skin and pain on my thigh where the severe rash was. The pain is so severe and the location (near my knee and on the back of my thigh) makes it very difficult to walk. or sit. or lie down.

Now fitted w/ lymphedema wraps - for legs and feet tho' the ones for my feet seem to make all things worse so just wearing leg wraps - I see some lessening of the swelling tho' not if I don't wear the wraps for even 6 hours.

Once my appt. this Fri. w/ the post-COVID clinic is over and I see if I'm accepted for .. what? study? .. then I'll ask my other docs to do more blood and other testing. From all I read, I do not have hope.

I will mention your experiences (thank you.) Tho' in my late 70s, I still work (self-employed) and am an non-driver so getting to appts. requires lots of coordination.

This journey is not one I wanted - I expected to live out my "golden" years being if not as active, at least as engaged as before. I'm frustrated and yes, depressed, with all this has put on all of us.

With gratitude,
Joan