Jonathan Edwards
Senior Member (Voting Rights)
'Improving signs of T cell exhaustion' sounds an awful lot like a wing and a prayer to me.
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CoRE: Long Covid, Lyme and related conditions clinic at Mt Sinai hospital
- Thread starter Jaybee00
- Start date
https://en.wikipedia.org/wiki/MTOR_inhibitors
(It's pretty complicated).
I also note the following in An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients (2020, International Journal of Molecular Sciences) —
(It's pretty complicated).
I also note the following in An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients (2020, International Journal of Molecular Sciences) —
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.
Calling late stage Lyme "long Lyme" is a bit jarring, almost cutesy, and may put off purists like me.
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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.
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.
Welcome @phantom. We have a tag for endopat and you can search the forum for reactive hyperaemia or reactive hyperemia.
Honestly, not much science behind this group/center.
Hello all. Just writing to share some additional information concerning another patient's experience at the CoRE clinic.
I was accepted into the clinic in January of this year. It took a couple months to receive an initial telehealth appointment and my one-day, in-person evaluation followed a couple months after that. The tests run and blood labs ordered appear to be identical to those described by Phantom above, save for the fact that they did have me do a NASA Lean Test (which was borderline - apparently had it suggested more severe POTS it would have been followed with a tilt-table) and the "BrainCheck" server was down (I was told that I would be notified when it was up and running and could do this test at home - no word as yet).
After the tests, I had a follow-up telehealth appointment to go over the results. There wasn't much to discuss - NeuroCatch flagged some "minor" cognitive impairment, dysautonomia, and a handful of slightly abnormal blood results - and the practitioner seemed very harried as she rushed through these. Unsurprisingly, the treatment plan appeared to be a standard template. They recommended the following:
MitoCore (this is essentially a multi-vitamin + NAC, ALA, Malic Acid, and Acetyl L-Carnitine)
Oxaloacetate (no dosage specified - see below)
LDN (starting at 0.5mg and titrating up)
Physical Therapy for Autonomic Support
This last is, I gather, a program developed by Dr. Putrino. I have been doing this via telehealth. So far, it is big on breathing exercises (similar to 4-7-8 breathing, though no ratio is specified) and very short (15-30 second) sets of very light "exercise" (e.g. supine heel slides).
With the exception of the rather rushed practitioner during my follow-up appointment (I don't hold it against her, I am sure I was one of dozens she was tasked with getting through for that day), my experiences talking to those working at the clinic have been quite positive and everyone has been quite lovely. The problem lies with getting to the point where I can actually talk to them. For instance, I was in a bit of a fog during my follow-up visit and failed to ask some pretty important questions, e.g. "why are you recommending an expensive supplement whose manufacturer has a history of some engaging in some pretty dodgy practices?" and "How much of this very expensive product should I take?" I had hoped that the latter of these questions might be answered in the clinic notes, but this was not the case. In the weeks since, I have not been able to get a response from the clinic regarding their recommended dosage, so have been left to my own devices - this has been my biggest complaint so far. My next scheduled visit is around a month from now.
Having been unable to find care elsewhere in the country and encouraged by what appeared to be a lot of energy and excitment surrounding the clinic's opening, I moved across the country to be able to become a patient (at present, they only accept New York and New Jersey residents). Of course, for all that I feel so discouraged, I don't know that I would have been better off anywhere else (I gather from this forum that the general concensus is that none of the treatments currently being recommended by just about any clinician are worth trying), and I am still only a couple months into the treatment - and again, for what it's worth, the staff have been really quite lovely.
Happy to answer any questions if anyone would like to know more.
I was accepted into the clinic in January of this year. It took a couple months to receive an initial telehealth appointment and my one-day, in-person evaluation followed a couple months after that. The tests run and blood labs ordered appear to be identical to those described by Phantom above, save for the fact that they did have me do a NASA Lean Test (which was borderline - apparently had it suggested more severe POTS it would have been followed with a tilt-table) and the "BrainCheck" server was down (I was told that I would be notified when it was up and running and could do this test at home - no word as yet).
After the tests, I had a follow-up telehealth appointment to go over the results. There wasn't much to discuss - NeuroCatch flagged some "minor" cognitive impairment, dysautonomia, and a handful of slightly abnormal blood results - and the practitioner seemed very harried as she rushed through these. Unsurprisingly, the treatment plan appeared to be a standard template. They recommended the following:
MitoCore (this is essentially a multi-vitamin + NAC, ALA, Malic Acid, and Acetyl L-Carnitine)
Oxaloacetate (no dosage specified - see below)
LDN (starting at 0.5mg and titrating up)
Physical Therapy for Autonomic Support
This last is, I gather, a program developed by Dr. Putrino. I have been doing this via telehealth. So far, it is big on breathing exercises (similar to 4-7-8 breathing, though no ratio is specified) and very short (15-30 second) sets of very light "exercise" (e.g. supine heel slides).
With the exception of the rather rushed practitioner during my follow-up appointment (I don't hold it against her, I am sure I was one of dozens she was tasked with getting through for that day), my experiences talking to those working at the clinic have been quite positive and everyone has been quite lovely. The problem lies with getting to the point where I can actually talk to them. For instance, I was in a bit of a fog during my follow-up visit and failed to ask some pretty important questions, e.g. "why are you recommending an expensive supplement whose manufacturer has a history of some engaging in some pretty dodgy practices?" and "How much of this very expensive product should I take?" I had hoped that the latter of these questions might be answered in the clinic notes, but this was not the case. In the weeks since, I have not been able to get a response from the clinic regarding their recommended dosage, so have been left to my own devices - this has been my biggest complaint so far. My next scheduled visit is around a month from now.
Having been unable to find care elsewhere in the country and encouraged by what appeared to be a lot of energy and excitment surrounding the clinic's opening, I moved across the country to be able to become a patient (at present, they only accept New York and New Jersey residents). Of course, for all that I feel so discouraged, I don't know that I would have been better off anywhere else (I gather from this forum that the general concensus is that none of the treatments currently being recommended by just about any clinician are worth trying), and I am still only a couple months into the treatment - and again, for what it's worth, the staff have been really quite lovely.
Happy to answer any questions if anyone would like to know more.
Thanks for sharing @DHagen.
That's wild. Are they not responding at all, or just not answering what dosage to take?
Those who man the front desk respond, but the response is that they will ask the practitioner to get in touch, which has yet to happen. It has been a couple weeks since I made an effort - apart from my frustration, it hardly seems worth it as I've already been pushed into making a decision - but I shall try again via phone in the coming week.
One positive to come of this is that the Physical Therapist they assigned to me has been very good at tailoring sessions to my particular situation beyond what I understand to be the standard program. This means that, while I don't know how much the autonomic rehab is helping (and honestly, even if it were a miracle program, it would still be pretty early to make much of a evaluation), I can certainly say that the stretches and flexes they recommended for my neck and shoulder issues do seem like they might be making a difference - certainly, I've been having fewer and fewer migraines since starting, which is very welcome even if not directly connected to ME/CFS.
Hi,DHagen I was in a study for Multi vitamin, ALA, NAC, ACETYL L carnitine (without Malic Acid) in high does for Me/Cfs. It didn’t do anything positive, I probably deteriorated. It is a bit of a worry that they are recommending the MitoCore product. More widely, I don’t think there is any evidence base for them to be used. The two drugs listed have been talked about a significant amount and I hope they will help you. Interesting to hear about how you go.
Thank you, Holinger. I am very sorry to hear that your experience taking these was not only non-productive, but may have made the situation worse; that's horrible. Was the study published?
It seems like a fair number of clinics and providers get sucked into a bit of a feedback loop happening with regard to a lot of these OTC supplements. Researchers hypothesize that there's *something* going on with mitochondria / ATP, patients and clinicians, in desperation because there's simply no solid evidence that anything at all reliably helps, throw everything they can find at it, and a small smattering of people do improve. The larger community amplifies these reports, which filter back up to researchers, who then start spending more time looking at these supplements, and their attention (regardless of whether or not it produces reproducible and well-documented positive results) appears to legitimize clinician's recommendations. Add a predatory supplement industry into the mix and it's a nightmare.
At the same time, it's tough to throw a rock or swing a stick in the online ME/CFS communities without hitting someone who's sure that NAC or Malate or something else really did make a difference for them... and it's hard not to want to try.
To date, I have not seen any significant deterioration. I may actually be a bit more clear headed this week, but I was going through a rough patch cognitively last week, so it's difficult to say whether my current state is anything beyond normal variation around baseline (as seems likely).
I am currently taking 1/2 the dosage listed on the bottle, which is to say 300mg NAC, 250mg ALC, 100mg ALA, and 107.5mg malic acid.
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Thank you, @DHagen for sharing your experience. Do you know whether they are doing a clinical trial on any of the treatments you are trying under their guidance? None of the treatments they have recommended for you have any clinical trial evidence as far as I know, though there is at least one LDN trial happening.