CoRE: Long Covid, Lyme and related conditions clinic at Mt Sinai hospital

'Improving signs of T cell exhaustion' sounds an awful lot like a wing and a prayer to me.

 

Oh, and then the separate Simmaron trial gives a different reason:

 

I cannot navigate their website. I'm curious as to the credentials of the researchers and clinicians involved in all three diseases, but particularly Lyme. This is in New York. Who are their ME/CFS experts? They're are plenty of good names in that area. Lyme experts? LC? I would think the names of all those involved (beyond just Putrino) would be spotlighted - maybe they are and I just can't find them.

Calling late stage Lyme "long Lyme" is a bit jarring, almost cutesy, and may put off purists like me.

 

Hello, I'm new here. I apologize in advance for what will seem to be an info dump, but in case anyone is interested in hearing a patient experience at the CoRE Clinic, I'm willing to share. I will be going there in person on Wednesday after having a telehealth consultation in January. I have not been formally diagnosed with ME/CFS but I'm hoping once I go, I will have more clarity. The bloodwork they ordered in advance of my in person visit were:
Progesterone
CBC/Diff Ambiguous Default
Comp. Metabolic Panel (14)
Thyroid Panel With TSH
Catecholamines, Plasma
EBV Antibody Profile T
estosterone,Free and Total
Hemoglobin A1c
Cortisol
Tryptase
D-Dimer
C-Reactive Protein, Cardiac
Myeloperoxidase (MPO)
Tumor Necrosis Factor-Alpha
Interleukin-6, Serum
HHV 6 IgG Antibodies
Allergens w/Total IgE Area 1
Fibrinogen Activity
Serotonin, Serum
Ambig Abbrev CMP14 Default

Reading through the thread on Dr. Putrino makes me a bit nervous about what type of answers I may or may not get when I go. This is a copy and paste of what I was emailed for confirmation of my in person appointment:

"Tests to be Performed:

Neurocatch: This test uses EEG gel, so please ensure your
hair is clean and free of products. If you have hair extensions or braids covering the middle of your scalp, they may interfere with the accuracy of the results.

Braincheck

EndoPAT: Longer nails may affect this test. If possible,
please ensure your nails are at a natural length.


RMR (Resting Metabolic Rate)"

During the telehealth, the practitioner stated that Dysautonomia testing would be skipped as I already have a POTS diagnosis.

Here is the website for one of the tests, I feel skeptical about the validity of this but it may be that the website feels promotional and I can't find much else about it: https://www.neurocatch.com/

I feel the same about this one: https://braincheck.com/platform/assess/

As to prior poster questioning the Lyme specialists, I originally sought out the CoRE Clinic as a grasping at straws effort, I had Lyme in 2003-2004 and it took two rounds of antibiotics to clear my symptoms at the time. I hunted down the old records prior to my telehealth appointment to document what had occurred. I don't know that I've ever felt quite right since I had Lyme but I also can't be certain if I felt quite right before it either. The worst of my symptoms began in 2014, but I was displeased to see that the diagnosis in the after visit summary was Long COVID, despite my assertion that I didn't notice any major difference in functioning after catching COVID once. The only difference I saw was having worse symptoms than the rest of my family and taking longer to recover than the rest of my family (we all caught it at the same time). I did clarify that I've had two lumbar punctures that have not shown any evidence of Lyme in my CSF, so perhaps that is evidence enough that my health issues can be attributed to Lyme from ages ago.

Their website seems to be more updated than when I first reached out to them, it's quite a coincidence that I read a book that mentioned Dr. Proal in December and when I searched her on the internet I found the CoRE Clinic had just opened.

If anyone has any insight into the science behind the testing they are ordering, that would be great.

 

Honestly, not much science behind this group/center.