Yale Paper: Long COVID/ME/CFS

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.

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.

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

And I thought my SOB, lack of balance, etc. was bad. I am now thankful I don't have Lymphedema!! This week my Neurologist thinks my Long Covid, former CFS and POTS are related. No solutions offered yet. Still taking Mestinon for now and trying to function as I can.

I have found, for some reason, the last few weeks even more difficult, perhaps because I thought the lymphedema wraps would help more than they are.

It's that doctors just don't believe this is real. Or "it can't be THAT bad" -- when it is.

To us all, if we had a lobby that went to state capitals and to the Senate and House in DC, maybe we'd be heard. For those in other countries, are you being heard more than those in the US?

Amen!! I just wish I had the energy to get a lobby going.

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

Hi Joan,
Speaking of apologies for not replying sooner, all correspondence from Mayo Clinic since 5/14 has been going directly to my spam folder. Just noticed the problem this morning (5/31). I’ve been preoccupied with other health issues, alas.
I have not encountered anyone else with lymphedema symptoms and possible post covid (long Covid) linkage.
Will post updates about homeopathy when available. I will be treated for elevated Epstein Barr titers with Intravenous ozone infusions… beginning in about three weeks. All I can do is hope for some relief.

At least you checked your spam, Keith! Thanks.

How does one persuade med personnel to check for Epstein Barr titers?

The COVID clinic at a DC university has sorta dismissed my symptoms w/o examining me - based solely on one telemed conversation. They want me to see a lymphedema specialist and for the other symptoms that occurred at the same time? See the people I've already seen (podiatrist x2, ER x 2; dermatologist x2 etc.) or find new ones.

I'm discouraged.

My hope for you is relief. One of us must get some.

Thanks for your thoughtfulness.

Joan

Hi again,
My homeopath had Epstein Barr bloodwork done along with whatever other blood tests he had done. EBV is dormant in most people and can become active due to stress among other reasons. My history includes Chronic Fatigue Syndrome diagnosis in 1990. At that time my EBV and herpes 6 titers were highly elevated. I was under extreme stress at the time… going through job loss, divorce and bankruptcy simultaneously. Stress can really undermine health.
I imagine your PCP or any of the doctors you are seeing can order EBV testing for you.