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anyone seen or seeing Dr. Enlander?

Discussion in 'ME/CFS Doctors' started by Navid, Nov 17, 2011.

  1. Navid

    Navid Senior Member

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    feedback please?

    thanks : )
     
  2. HowToEscape?

    HowToEscape? Senior Member

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    I see Dr. E.

    Vastly better than not having a specialist. I can't compare to others, as this is the only M.E spec I've seen. Currently, my insurance is paying nothing so I can't report on the full menu. I do get an injection (Hepapressin, available at other M.E specialists also) which has a noticeable effect. If I skip a shot I will always drop unmistakably, and for me at least going to 2x shots per week made a noticeable improvement.

    If you can get the costs covered he has an interesting experiment going, a fixture that pumps blood around via external compression (no IV afaik). He's actively doing research, not just writing scrips and waiting for someone else to find the answers.

    Dr. Enlander went into this field by choice, could have done something easier and far more lucrative. A real mensch.
     
  3. Klmrav

    Klmrav

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    Dr. E

    I've been a patient of Dr. Es for years (maybe 10?). I am very grateful to have him as my doc. I travel from NC to NYC to see him. I recently started his GcMAF program. I use the hepa shots, betamax spray, immunoprop, immunoplus and electrolytes. I also do 1/2 cc of 20/mg per cc hydroxocobalamin sub-q 2-3 x per wk, FolaPro, 6-10 mg of buffered vita c orally, get a myers cocktail IV locally when I can afford it, among other supps.

    If I did not have Dr. E I'm sure I'd be bedbound at this point.

    Best of Luck,
     
    justinreilly likes this.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I have been seeing Dr. E for a few weeks now, so too new to really say. So far, I am happy. started hepapressin which he gives everyone once a week. Plus started GcMaf- no real difference yet. Feel free to contact me later on after I've seen him for a while if you want more info. He takes my out-of-state insurance for office visits.

    Nielk sees him and is a big fan.
     
  5. Nielk

    Nielk

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    I just saw this thread and yes, Justin is right, I have been seeing Dr. Enlander for the past 9 years and I'm a grateful fan.
    Considering that there is no cure out there for ME/CFS, he does try to improve his patients' severity of the illness as much as possible.
    He has his protocol which was described on a previous post and depending on what your symptoms are, he helps you minimize them.
    He spends a lot of time with his patients - really listening to them. He is currently offering GcMAF, maf 818, Ampligen.
    He also offers antivirals if he sees a heavy viral load. He is extremely intelligent and caring. He started a clinic for studies for ME/CFS at MT Sinai hospital.
    He was invited to speak at the House of Lords in London March 6th.
    I highly recommend him.
     
  6. gretac

    gretac

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    Hi, Nielk
    What is maf 818? I'm familiar with GcMAF and MAF 314, but not MAF 818 - and couldn't find it on Enlander's site
    Thanks!
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Nielk,

    Maybe he could help you out of your current situation with some of his treatments? For those who respond well to GcMAF, it helps with lots of symtoms. Hate to see you suffering like this!

    :hug:
    Sushi
     
  8. SaraM

    SaraM Senior Member

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    Where is the thread for his protocol?
     
  9. Daffodil

    Daffodil Senior Member

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    can someone tell me how to find out if dr. enlander takes their out of state insurance? i have a good friend i am trying to help. i suspect she has lyme and/or CFS and lives in maryland. could she see enlander which her united health care insurance? how does it work?

    thank you
     
  10. Nielk

    Nielk

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    Hi Daffodil,

    I don't think it matters what state you live in. It depends on the insurance. I'm not sure if they accept United Healthcare, but you can call the office and they'll be glad to tell you or you can e-mail to the office e-mail: enlandercfs@yahoo.com (this goes straight to the office staff)

    SaraM - You can read about his protocol on his website at: www.enlander.com/ Just go to treatments. I'm not sure if it has been updated with maf 818 yet, since it's pretty new.

    Sushi - Thanks for your concern. He is trying with me but, it seems that I am a very difficult case and very sensitive to medication.
     
  11. HTree

    HTree

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    Hi Folks,
    I am wondering: I've seen Dr. E , who wants to do the Nexavir injections.
    I also decided to (and was able) to get another opinion and went to Miami to see Dr K's people. They suggest Immunovir.

    Does anybody know why Dr. E does NOT like imunovir? and visa versa? Why do these experts prescribe different immunomodulators?
    Is it purely an access thing? Are there alliances to the manufacturers of the drugs?

    Not much data on effectiveness for either--but certainly it seems both have helped some folks.

    My relevant "stats" are:
    EBV (IGG EA very high)
    HHV-6 (High)
    Low NK cell activity
    Age--youngish ;)

    Any thoughts on why the different treatment recommendations? ( Am I cynical to ask whether Dr. E makes money off of his injections? I have to ask...at least Imunovir comes from a different source that Dr. K's office.)

    My instincts tell me that they are both very, very competent and..also nice people. But I am indecisive about which to try, whose advice to take. And since each drug will take 6 month at least to see if working, I feel like I want to pick the "right" one for the "right" reasons on the first try, ideally!

    Any advice, thoughts, insights, speculations?

    Many thanks!!

    Take care all-
    Htree
     
  12. sprankel

    sprankel

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    Dr Kenny de Meirleir prescribes both (not on the same time of course, but he uses both in different patients).
    Most of the time he prescribes Nexavir.

    I don't know the difference. Sometimes he prescribes Isoprinosine (is the same as Immunovir) because it's cheaper in Europe and not
    everybody is able to pay for the Nexavir.

    Maybe you can ask dr. Enlander about the difference between them.

    Good luck!
     
  13. CindyWillis

    CindyWillis Senior Member

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    Ironically, there is an article on the internet about this. it compares each doctor and what form of this medicine they are using. It includes all of the big names and why they use what they use. I don't have it in front of me but if you googled Dr. Enlander's name and Heppapressen (SP) check his website for how it is spelled, you will find the article. I read it last week.
     
  14. HTree

    HTree

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    Hi Cindy,
    I googled and looked everywhere, but do not see this article! If you have another moment of energy at some point, might you try to find the URL again?
    thank you!
    :thumbsup:

    Thanks Sprankel, I might work up the courage to ask dr.s themselves :D
    Htree
     
  15. CindyWillis

    CindyWillis Senior Member

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    Here is the article. By the way, I couldn't recommend Dr. Enlander more. In almost 2.5 months, I have regained a great deal of health at the higher doses of GCMAF he recommended for me and his other protocol. He gave me 100% chance of being 100% well and not needing medicine anymore. He has had many patients have this response with the longest time of CFS of 14 years with a complete recovery. I am moving up to 100 ng of GCMAF and it has made a 300% difference in my health. The higher doses are like dialing heaven as far as my CFS goes and he tests to make sure all is fine while he does it. I am now 90% well and started out in April of 2009 unable to walk in public without a wheel chair. Not bad for improvement. I have been on GCMAF since December 2010 but have only taken the higher doses in the past 3 months. Three cheers for Dr. Enlander to have figured this out. I also take his GCMAF yogurt MAF878 along with the Heppressin and some other things he recommends. I would trust him in his advice to you completely. He also cares about those who can't afford treatment in a way few doctors do. I couldn't be more pleased with him or my progress.

    Here is the article:

    Nexavir (Kutapressin) for ME/CFS


    With thanks to a blog of cfssufferer. http://livingwithchronicfatiguesyndrome.wordpress.com/. Nexavir may improve ME/CFS symptoms because it: 1. Inhibits EBV, 2. Inhibit HHV-6, 3. Is anti-inflammatory, 4. Is antiviral, 5. Is an immunomodulator (Nexavir may help shift the immune system away from Th2 dominance.), 6. Enhances blood flow in the brain (as measured by a SPECT scan.). This increased rate of blood flow may be a consequence of the Bradykinin effect which involves dilation of the blood vessels.




    Dr. De Meirleir

    Dr. De Meirleir performed a study involving the administration of Nexavir or a placebo to ME/CFS patients. 63% of those ME/CFS patients in the treatment group responded to Nexavir while only 17% of those ME/CFS patients in the placebo group responded. Dr. De Meirleir finds that approximately 50% of his patients are pain free after 2-3 months of Nexavir injections. His patients generally experience a normalisation of sleep within 3 days of commencing Nexavir. Approximately 70% of Dr. De Meirleirs patients experience a 20+ point increase (based on the Karnovsky scale) as a consequence of taking Nexavir

    Dr. Cheney

    Dr Cheney formerly recommended Kutapressin as a treatment for ME/CFS. He stated that it is analogous to a weaker form of Ampligen. In the past Dr Cheney used Kutapressin/Nexavir injections however at some staged preferred using the gel form of Nexavir. He has also stated that his patients generally experience a 20-80% improvement as a consequence of taking Nexavir gel and secondary treatments. ECHO terrain maps now mainly influence Dr Cheneys ME/CFS protocol and he has consequentially stopped prescribing Nexavir. He now uses his own mix of five cell signalling factors instead of Nexavir. These are; porcine brain, bison liver, bison heart, bison kidney and bison pancreas.

    Dr. Enlander

    Dr. Enlander used Kutapressin for approximately 12 years until Schwarz Pharma ceased producing it. He then originally tried Nexavir on his patients however due to the preservatives within Nexavir, he trialled his patients on Hepapressin. Hepapressin is similar to Nexavir however it is an Argentinean bovine liver extract, as opposed to porcine liver extract. Dr. Enlander recommends that his patients take other substances in tandem with Hepapressin to increase its effectiveness. 67% of his patients have shown an improvement as a consequence of weekly Hepapressin injections in combination with other treatments. Recently, Dr. Enlander commenced a study alongside Dr. De Meirleir that examined alternative ways to administer Nexavir/Hepapressin.

    Dr Teitelbaum

    Dr. Teitelbaum has noticed a dramatic improvement in some of his CFS patients as a consequence of taking Nexavir regularly. He has found that those patients who took Nexavir three times a week didnt gain much benefit as daily injections are a ?necessity. Dr. Teitelbaum has also observed that some of his patients CFS symptoms returned after discontinuing Nexavir.

    Dr. Lapp

    Dr. Lapp provided almost every ME/CFS patient that made an appointment with him, the opportunity to try Kutapressin. He has labelled it as a wonderful alternative. Dr. Lapp has stated that Nexavir was handmade for CFS patients with the main arguments against taking it being the cost and the necessary frequency of the painful injections.

    Combining Nexavir with Other Treatments

    Many specialists combine Nexavir with other treatments to either increase the efficacy of Nexavir itself or through the means of multiple treatments increasing the chances of a successful treatment. Dr. De Meirleir often uses Nexavir in combination with vitamin B12 injections. He recommends 10mgs of B12 (either methylcobalamin or hydroxocobalamin) be administered twice a week. Dr. Enlander combines Hepapressin injections with injectable; magnesium sulphate, folic acid, B12, calphosan, glutathione and trace elements. Dr. Cheney (who no longer recommends Nexavir) formerly found combining Nexavir gel with Hawthorn leaf and flower an effective treatment. Some anecdotal reports indicate that combining Nexavir with other, more traditional prescription antivirals may increase the efficacy of Nexavir or one of the other antivirals.

    How to take Nexavir?

    Nexavir is to be administered by either subcutaneous or intramuscular injection. Different ME/CFS specialists have various protocols regarding dosage and frequency of Nexavir injection however the most commonly recommended dosage is 2ml administered daily. Some patients may experience a herxheimer type reaction on a 2ml starting dose hence it may be wise to work up to a 2ml dose. Dr Cheney (when he prescribed Nexavir) recommended that the dose be varied between 1 and 4 cc a day. Nexavir should be taken for at least 6 months to determine whether it may be an effective treatment.

    Other Details

    A prescription is required to purchase the injectable form of Nexavir. The only company that manufactures Nexavir is a Texan company called Nexco Pharma. A Texas pharmacy called Village Compounding produces Nexavir compounded as a transdermal gel. A prescription is also required for this Nexavir gel. ???Nexavir should not be confused with Nexavar, a drug that treats certain cancers.

    Negatives of taking Nexavir

    The main negative of taking Nexavir is the cost. At 2ml a day (the standard dose), Nexavir will cost approximately US$450 a month. As the minimum recommended treatment period of Nexavir is 6 months (barring side effects), the total cost of a Nexavir trial is approximately US $2,700. This is not including the cost of shipping, syringes or needles. ?Some insurance companies may partially cover the cost of Nexavir. Another negative of taking Nexavir involves the cumbersome daily injections. These have been described by some Nexavir uses as painful. The final potential negative of using Nexavir as an ME/CFS treatment involves the possible side effects (mentioned in an earlier section.) While the likelihood of experiencing these side effects seems to be minimal, the possibility exists.

    Source: http://livingwithchronicfatiguesyndrome.wordpress.com/2010/10/25/nexavir-kutapressin-for-cfs/

    QUOTE=HTree;259596]Hi Cindy,
    I googled and looked everywhere, but do not see this article! If you have another moment of energy at some point, might you try to find the URL again?
    thank you!
    :thumbsup:

    Thanks Sprankel, I might work up the courage to ask dr.s themselves :D
    Htree[/QUOTE]
     
  16. Ocean

    Ocean Senior Member

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    For out of town patients, is it possible to get these shots regularly after seeing him?
     
  17. HTree

    HTree

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    Yes Ocean-- I believe-- he combines them with his other supplements and then mails the vials/ syringes to your home, to be injected once a week.
     
  18. HTree

    HTree

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    Hi All.
    Just a follow up. I tried nexavir/Dr. E injections, just a small dose, and a day later had Severe neuro affects--
    sudden intense dizziness, knocked down, visual changes (saw things at an angle) etc. I don't think I'm allergic (didn't have a reaction right away--that is different)--This was just a response to the treatment, which started the next day after injection. (eg NOT an acute allergy to the phenol, etc, I don't think).
    Anyone else experience this?
    Several months later I am better but still haven't recovered-- still more dizzy standing/sitting up, etc. Before I could walk 30 minutes at a time before having to sit due to dizziness, now still I can only walk a few minutes, and even my sitting-up time is limited--have to lie down every hour or so or am too dizzy/headachey.
    Basically I think (neuroinflammation/reaction) from the injection greatly exacerbated ANS dysfunction/Orthostatic Intolerance. And I'm still not back to pre-injection state. (though no longer vertigo/visual issues, those lasted for just an hour or so--I'm still left with the extra-dizziness/worsened orthostatic intolerance, two months later).

    Such a tiny dose and such a dramatic affect! So I'm considering LDN and/or Immunovir now...

    Wondering if others have experienced this, and any thoughts as to what this was, what direction I should turn? Looking for the patient-experts that are among us :)
    Thanks All.

    Peace,
    Htree
     
  19. Ocean

    Ocean Senior Member

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    So sorry to hear you had such a setback. I hope you will improve soon to your baseline. Thanks for letting others know about your reaction. It's good to hear both good and bad reactions so people know both potential risks and benefits. I'm even a bit scared of trying LDN as I think I remember some mentioning they got worse on that for a long period too.
     
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I believe that Dr. Enlander uses several ingredients in this injection and Nexavir (I don't think it is exactly the same as Nexavir--rather it is bovine-based instead of porcine-based). Do you remember the other ingredients? It might be possible that you are reacting to one of those. (I think there is some form of B12 and magnesium and...?)

    Hope you get over this soon.
    Best wishes,
    Sushi
     

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