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Appt With Enlander

Discussion in 'GcMAF' started by SB_1108, Aug 20, 2015.

  1. SB_1108

    SB_1108 Senior Member

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    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...
     
    Last edited: Aug 20, 2015
  2. halcyon

    halcyon Senior Member

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    What viral testing did he do?
     
    justy likes this.
  3. SB_1108

    SB_1108 Senior Member

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    Here are the labs he requested:
    • Epstein-Barr Virus AB PNL
    • CMV AB (IGM)
    • TSH, 3rd Generation
    • M. Pneumoniae (IGG, M), EIA
    • Complete Metabolic Panel w/EGFR
    • Coxsackie B (1-6) AB
    • Prostatic tumor profile (Males only)
    • CA 125 (Females only)
    • Resp Allergy Prof Reg I
    • Lyme disease, DNA, PCR, BLD
    • Thyroid AB (ATA, PTO)
    • HIV AB, HIV 1⁄2, EIA, w/RFLNY (if patient desires)
    • IL2, IL6, IL10 (Inter Lukin)
    • Candida AB
    • Babesia Microti (IGG, IGM)
    • CMV AB (IGG)
    • T3 Uptake
    • C. Pneumoniae (IGG, A, M)
    • E. Chaffenensis AB (IGG, M)
    • CEA
    • Food Allergy Profile
    • Parvovirus B19 AB (IGG, M)
    • Vitamin B12, Serum
    • HerpesVirus 6 (IGG, IGM)
    • Lymphocyte Subset Panel 2
    • Methylmalonic/Homocysteine
    • T4 Free
    • CBC (Includes Diff/PLT)
    • Natural Killer Cell Function
    • Lupus Profile
    • Carnitine, FRAC, SER
    • Gliadin AB (IGG, IGA)
    • HSV 1⁄2(IGG), HSV(IGM) w/RF
    • Rheumatoid arthritis Diag
    • Vitamin D, 25-OH, LC/MS/MS
    • Hepatic Function Panel
    • Vap (TM) Cholesterol Test
     
    Olena, Angela828, Hanna and 5 others like this.
  4. halcyon

    halcyon Senior Member

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    Anything interesting come back abnormal?
     
  5. aquariusgirl

    aquariusgirl Senior Member

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    Interested in your copper/HM chelation. Have you written about it anywhere?
     
  6. SB_1108

    SB_1108 Senior Member

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    @halcyon - Yes but I think its just the typical CFS stuff...

    HHV6 IgG was elevated
    Candida Albicans IgG was elevated
    Platelet Count was low
    Creatinine was low
    Carnitine was low
    Parvovirus B19 IgG was elevated
    EBV IgG was positive
    EBNA was positive
    Cytomegalovirus IgG was positive
    M. pneumoniae IgM was elevated

    And also... forgot to mention that he tested Nagalase through Health Diagnostics Research Institute in New Jersey and that was also elevated.
     
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  7. SB_1108

    SB_1108 Senior Member

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    @aquariusgirl - Yes my first posts on phoenix rising were mainly about copper toxicity... I was going to send you one but if you look in my history you can see all of them.

    Btw - another thing that he didn't advocate that I thought was helpful was probiotics.
     
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  8. Snookum96

    Snookum96 Senior Member

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    Ontario, Canada
    Thanks for the summary of your visit. I'm thinking about which doctor to try to get into and this is a perfect summary to compare!
     
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  9. SB_1108

    SB_1108 Senior Member

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    I did want to add something... I noticed that one of the supplements Dr. Enlander recommends "Gear Up" has L-Glutamic Acid. I think that that can be converted into L-Glutamine from what I've read.
     
  10. maryb

    maryb iherb code TAK122

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    Can I ask how much your labs cost? Thats a hefty list.
    Are you in Europe or the US?
     
  11. maryb

    maryb iherb code TAK122

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    Sorry I also meant to ask, does Dr Enlander prescribe Ampligen?
     
  12. SB_1108

    SB_1108 Senior Member

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    @maryb - I haven't received my bill for the labs yet. Generally I have decent insurance so I'm hoping not very much. I'm in the US.

    Dr. Enlander does prescribe Ampligen but only for the patients that are local enough to be able to return for the weekly IVs. I've read the costs of Ampligen are increasing to about $15k a year. None of that works for me.
     
  13. SB_1108

    SB_1108 Senior Member

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    Another thing interesting about Dr. Enlander's stance on chelation/heavy metals is that his protocol does address glutathione shortages with his supplement "Gear Up" - I just thought that was interesting. For anyone that has ever done chelation or a heavy metal detox, you know that glutathione is important in the overall process.
     
  14. alice111

    alice111 Senior Member

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    @SB_1108 did enlander mention anything About POTS/ OI, does he prescribe things such as Florinef? Or does he believe this is treated with antivirals? Thanks!
     
  15. Apple

    Apple Senior Member

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    Hi @SB_1108 . Thanks for sharing. 3 hours?! Wow. My kind of doctor! haha. I so so so wish I was able to travel. Did he give lots of general advice? Or is it all based on what your test results say? Tempted to skype him, but not a chance of being able to get that level of testing (or treatment) in the UK.

    Anyway. I hope his treatment helps you. Good luck! :)
     
  16. SB_1108

    SB_1108 Senior Member

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    @alice111 - He did not mention anything about POTS/OI or prescribing Florinef however orthostatic intolerance is not one of my symptoms (knock on wood). Have you tried Midodrine? I've heard its also helpful for POTS.

    @Apple - He gave a lot of very general advice - I believe its a very standard protocol for every patient with very little variation. I did not feel that he really factored my blood test results into my treatment protocol.
     
  17. Vineyard1

    Vineyard1

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    Would you mind telling me how much the Hepapressin, Immunoprop and GcMAf cost on a monthly basis? Also, have you now noticed any changes with this protoccol?
     
    denmarkk likes this.
  18. dcinelli

    dcinelli

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    I see Dr. Enlander, just started GcMaf injections, but wanted to point out that the allergy tests he does are blood based. Blood based allergy tests are notoriously inaccurate, often resulting in the negative. I have had both blood and skin allergy tests. The blood showed up negative. The skin injection method left me with bumps for weeks. I know allergy doctors who use blood. So it's not his fault. But I would not put too much stock in any blood based allergy test.
     
  19. SB_1108

    SB_1108 Senior Member

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    I've had to discontinue treatment with Dr. Enlander because I was not able to get in touch with the office for followup or supplement orders.

    I've heard that Dr. Enlander has retired and has discontinued his Ampligen Trials. Anyone know anything?
     
    denlander likes this.
  20. dcinelli

    dcinelli

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    Just spoke to the office an hour ago to make a new appointment. He may have discontinued the Ampligen trials but he is still practicing and the office is open. It has gotten much harder to get through at certain times.
     

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