SB_1108
Senior Member
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- 315
I recently came back from my appt with Dr. Derek Enlander in NYC and I just wanted to document it for the sake of everyone else considering going in the future.
I went ahead and had all the labs they requested done prior to the appt because Dr. Enlander doesn’t take my insurance. My primary care ordered all the labs and had them faxed over. The fax machine at Dr. Enlander’s office did not work and they did not receive any of my documentation. Luckily, I brought all results with me. He reviewed everything on the spot.
Dr. Enlander spent about 3 hours talking to me and answering my questions which is unheard of IMO. I’ve been to hundreds of Doctors and never experienced that level of interaction. I was very pleased that he spent so much time answering my questions and listening to my concerns.
Dr. Enlander doesn’t come off as unapproachable like a lot of Doctors. The most interesting thing is that anytime you call the office to ask them a question, you either get an answering service or you may actually speak with Dr. Enlander directly! I thought this was crazy because I don’t think I’ve ever spoken to any physician directly over the phone - EVER!
He believes that ME/CFS is an immune dysfunction resulting from a virus. He does not seem to believe it is bacterial… he believes its viral. (Edit: I felt compelled to add that I do not agree with this hypothesis - not that it matters).
It seemed to me that the treatment protocol he offers is pretty standardized… you either go on one of two routes: Ampligen or Immunoprop/Hepapressin and GcMaf. There isn’t much variation in treatment. He said I wasn’t a good candidate for Ampligen (because of travel distance, costs, etc) so I went with the second option. From what I understand Immunoprop/Hepapressin and GcMaf all work best if taken TOGETHER. I received the AGAR MAF 878 (as opposed to GcMaf injections) to begin with as I’m super sensitive to everything and I’m allergic to dairy… start low and slow.
I’ve just started this protocol so I don’t have much to say… I did receive a test Hepapressin injection at the office (as they won’t let you take home the syringes without a test dosage). I was reluctant to do this because I was about to get on a flight but ultimately I conceded and I’m glad I did because everything was fine. BTW Hepapressin should be refrigerated (because it does not contain preservatives). I am supposed to inject myself weekly and he taught me how to do this in the office.
My only concern is that he doesn’t mention any of the treatments that I have found most helpful in my search for a cure. For example, without l-glutamine, digestive enzymes, and metal detox - I would be much sicker than I am today. He was not a proponent of having amalgams removed if you have CFS. Luckily I don’t have any amalgams but I did have a copper IUD and without chelation/nutritional balancing from that, I would still be bedridden. Leaky gut has been studied in ME/CFS and is extremely common so I’m surprised that he doesn’t mention or treat it. He was also unfamiliar with treatment for SIBO, which is very common in CFS. However, he does test for Candida.
Not including labs, hotel and flight… my visit with him cost approximately $850 (including supplements/injections). This is amazing if you think about Dr. Cheney’s pricing.
Pro: Spends a lot of time with patient, office is in an amazing location, treatment protocol seems doable and he is a more affordable ME/CFS specialist.
Con: Office never received all files I had sent over, no mention of several helpful treatments (I feel like that does other patients a disservice).
Anyway… I’ll try to update with my progress. I am supposed to follow-up with him in 12 weeks but I’ll be doing that over the phone. I’d love to go back to NYC but its so expensive and physically demanding.
I’ll try to answer any questions if anyone has any...
I went ahead and had all the labs they requested done prior to the appt because Dr. Enlander doesn’t take my insurance. My primary care ordered all the labs and had them faxed over. The fax machine at Dr. Enlander’s office did not work and they did not receive any of my documentation. Luckily, I brought all results with me. He reviewed everything on the spot.
Dr. Enlander spent about 3 hours talking to me and answering my questions which is unheard of IMO. I’ve been to hundreds of Doctors and never experienced that level of interaction. I was very pleased that he spent so much time answering my questions and listening to my concerns.
Dr. Enlander doesn’t come off as unapproachable like a lot of Doctors. The most interesting thing is that anytime you call the office to ask them a question, you either get an answering service or you may actually speak with Dr. Enlander directly! I thought this was crazy because I don’t think I’ve ever spoken to any physician directly over the phone - EVER!
He believes that ME/CFS is an immune dysfunction resulting from a virus. He does not seem to believe it is bacterial… he believes its viral. (Edit: I felt compelled to add that I do not agree with this hypothesis - not that it matters).
It seemed to me that the treatment protocol he offers is pretty standardized… you either go on one of two routes: Ampligen or Immunoprop/Hepapressin and GcMaf. There isn’t much variation in treatment. He said I wasn’t a good candidate for Ampligen (because of travel distance, costs, etc) so I went with the second option. From what I understand Immunoprop/Hepapressin and GcMaf all work best if taken TOGETHER. I received the AGAR MAF 878 (as opposed to GcMaf injections) to begin with as I’m super sensitive to everything and I’m allergic to dairy… start low and slow.
I’ve just started this protocol so I don’t have much to say… I did receive a test Hepapressin injection at the office (as they won’t let you take home the syringes without a test dosage). I was reluctant to do this because I was about to get on a flight but ultimately I conceded and I’m glad I did because everything was fine. BTW Hepapressin should be refrigerated (because it does not contain preservatives). I am supposed to inject myself weekly and he taught me how to do this in the office.
My only concern is that he doesn’t mention any of the treatments that I have found most helpful in my search for a cure. For example, without l-glutamine, digestive enzymes, and metal detox - I would be much sicker than I am today. He was not a proponent of having amalgams removed if you have CFS. Luckily I don’t have any amalgams but I did have a copper IUD and without chelation/nutritional balancing from that, I would still be bedridden. Leaky gut has been studied in ME/CFS and is extremely common so I’m surprised that he doesn’t mention or treat it. He was also unfamiliar with treatment for SIBO, which is very common in CFS. However, he does test for Candida.
Not including labs, hotel and flight… my visit with him cost approximately $850 (including supplements/injections). This is amazing if you think about Dr. Cheney’s pricing.
Pro: Spends a lot of time with patient, office is in an amazing location, treatment protocol seems doable and he is a more affordable ME/CFS specialist.
Con: Office never received all files I had sent over, no mention of several helpful treatments (I feel like that does other patients a disservice).
Anyway… I’ll try to update with my progress. I am supposed to follow-up with him in 12 weeks but I’ll be doing that over the phone. I’d love to go back to NYC but its so expensive and physically demanding.
I’ll try to answer any questions if anyone has any...
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