TheFragile

TheFragile

[verified user]

TheFragile

TheFragile

@TheFragile [verified user]

Jallisae Nedi

Jallisae Nedi

Long COVID
 

Stanford LC clinic underwhelming

Chronic Illnesses: Long COVID
Symptoms Treated: Long COVID - Moderate improvement
Last appointment: 1+ years ago

This clinic is ok. I have seen two providers here, NP Jallisae Nedi and PA Vincent Poon. The overall feeling I get is that the NPs and PAs are on a short leash. They have a few medications they are approved to prescribe and they do not go beyond that short list. They prescribe low dose naltrexone and low dose Abilify. Also Celebrex and Ketotifen and Pepcid. They have stated that they don’t believe in labs. They don’t seem to keep up with new research or theories. I would say come here if you can’t access LDN or LDA elsewhere. But that’s really the extent of what they seem to know. They give all the same meds/advice to everyone. They do not tailor anything to your specific symptoms. Also it’s a bit frustrating they don’t seem to loop in or refer you to other specialists for dysautonomia, MCAS, or other common comorbidities. They only address the fatigue symptoms at this clinic, with the very limited tools they prescribe. I had to go elsewhere to get Mestinon and Modafinil which most other CFS clinics would have in their arsenal. They take most insurance including Medi-cal which is a plus. They require in person visits initially and then once every two years. I would not travel to attend this clinic nor would I pay out of pocket.


How easy was it to get an appointment?
2 / 5

TheFragile

TheFragile

@TheFragile [verified user]

Vincent Poon

Vincent Poon

ME/CFS
 

Stanford MECFS clinic is underwhelming

Chronic Illnesses: Long COVID
Symptoms Treated: Chronic Fatigue - Moderate improvement
Last appointment: Within the last 6 months

This clinic is ok. I have seen two providers here, NP Jallisae Nedi and PA Vincent Poon. The overall feeling I get is that the NPs and PAs are on a short leash. They have a few medications they are approved to prescribe and they do not go beyond that short list. They prescribe low dose naltrexone and low dose Abilify. Also Celebrex and Ketotifen and Pepcid. They have stated that they don’t believe in labs. They don’t seem to keep up with new research or theories. I would say come here if you can’t access LDN or LDA elsewhere. But that’s really the extent of what they seem to know. They give all the same meds/advice to everyone. They do not tailor anything to your specific symptoms. Also it’s a bit frustrating they don’t seem to loop in or refer you to other specialists for dysautonomia, MCAS, or other common comorbidities. They only address the fatigue symptoms at this clinic, with the very limited tools they prescribe. I had to go elsewhere to get Mestinon and Modafinil which most other CFS clinics would have in their arsenal. They take most insurance including Medi-cal which is a plus. They require in person visits initially and then once every two years. I would not travel to attend this clinic nor would I pay out of pocket.


How easy was it to get an appointment?
2 / 5

TheFragile

TheFragile

@TheFragile [verified user]

Mitchell Miglis

Mitchell Miglis

Neurology
 

Autonomic specialist

Chronic Illnesses: Long COVID
Symptoms Treated: Dysautonomia - Better long time POTS - Better long time Orthostatic Intolerance - Better long time Chronic Fatigue - Better long time
Last appointment: Within the last 6 months

Dr Miglis is an important part of my long covid / MECFS care team. He specializes in POTS and autonomic dysfunction, from what I understand. He prescribed me mestinon and modafinil, both of which have been extremely helpful. He definitely believes in LC. He seems way more knowledgeable than the Stanford CFS or Long Covid clinics. The only downside is it is an extremely long wait to get to see him, and even as an established patient, the first follow up appointment is six months later.


How easy was it to get an appointment?
2 / 5

TheFragile

TheFragile

@TheFragile [verified user]

Vijan Joshi

Vijan Joshi

Internal Medicine
 

Great PCP for long covid

Chronic Illnesses: Long COVID
Symptoms Treated: Dysautonomia - Better long time MCAS - Better long time Long COVID - Better long time Chronic Fatigue - Better long time
Last appointment: Within the last 6 months

Dr Joshi has been great for me. It took a while but he has prescribed me medications like Mestinon and Modafinil which have been the most helpful drugs I’ve tried for long covid. I later saw an autonomic neurologist at Stanford who was so impressed that Dr Joshi had already prescribed them for me. He has addressed all my other health issues and does not hesitate to offer referrals to specialists. He’s not big on labs but will order if you request. He is happy to do disability paperwork if I make an appointment and have him do the paperwork during our appointment. He isn’t overly empathetic but that’s ok. He reads all the notes from other providers and I feel like he does a great job of staying on top of my very complex care network.


How easy was it to get an appointment?
5 / 5

TheFragile

TheFragile

@TheFragile [verified user]

Seema Nair

Seema Nair

Neurology
 

Believes in Long Covid, but doesn’t treat

Chronic Illnesses: Long COVID
Symptoms Treated: Brain Fog - Moderate improvement Dysautonomia - Moderate improvement Cognitive Dysfunction - Moderate improvement
Last appointment: Within the last 6 months

Dr. Nair definitely believes that Covid causes cognitive dysfunction. If you’re looking to have your symptoms validated, she is very good at documenting and she is empathetic. However she does not have any treatments and doesn’t seem to be willing to offer any medications. She will refer you for tests like MRI, nerve conduction, neuropsych, etc to rule out other issues. But it doesn’t seem like she has anything to offer for long covid, nor is she willing to prescribe anything. Overall I think she was helpful for documenting my disability but otherwise it has been a lot of wasted energy.


How easy was it to get an appointment?
4 / 5

TheFragile

TheFragile

@TheFragile [verified user]

Stanford CFS clinic

Stanford CFS clinic

ME/CFS
 

One size fits all

Chronic Illnesses: Long COVID
Symptoms Treated: Brain Fog - Better long time Chronic Fatigue - Moderate improvement
Last appointment: Within the last 6 months

This clinic is ok. I have seen two providers here, NP Jallisae Nedi and PA Vincent Poon. The overall feeling I get is that the NPs and PAs are on a short leash. They have a few medications they are approved to prescribe and they do not go beyond that short list. They prescribe low dose naltrexone and low dose Abilify. Also Celebrex and Ketotifen and Pepcid. They have stated that they don’t believe in labs. They don’t seem to keep up with new research or theories. I would say come here if you can’t access LDN or LDA elsewhere. But that’s really the extent of what they seem to know. They give all the same meds/advice to everyone. They do not tailor anything to your specific symptoms. Also it’s a bit frustrating they don’t seem to loop in or refer you to other specialists for dysautonomia, MCAS, or other common comorbidities. They only address the fatigue symptoms at this clinic, with the very limited tools they prescribe. I had to go elsewhere to get Mestinon and Modafinil which most other CFS clinics would have in their arsenal. They take most insurance including Medi-cal which is a plus. They require in person visits initially and then once every two years. I would not travel to attend this clinic nor would I pay out of pocket.


How easy was it to get an appointment?
2 / 5

TheFragile

TheFragile

@TheFragile [verified user]

Gina Serraiocco

Gina Serraiocco

Integrative Medicine
 

Very knowledgeable about LC

Chronic Illnesses: Long COVID
Symptoms Treated: Brain Fog - Moderate improvement Fatigue - Moderate improvement PEM (Post Exertional Malaise) - Moderate improvement MCAS - Complete recovery Gastric Issues - Complete recovery
Last appointment: Within the last 6 months

Dr. Gina has been with me on my Long Covid journey for over two years. She has been extremely helpful with MCAS symptoms and gut health. She is knowledgeable about supplements and other diseases that exacerbate LC like toxic mold and Lyme disease. My one complaint is that she pushes the brain retraining stuff despite no proven effectiveness and many accounts of harm.


How easy was it to get an appointment?
2 / 5

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