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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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...
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....
I highly recommend him.
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
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
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.
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.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
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