anyone seen or seeing Dr. Enlander?

[HTree]

Thanks Ocean, Sushi.
Yes, and just so others reading this can make an informed decision, I meant to add to above post:
his hepapressin/nexavir injections also include: magnesium sulphate, folic acid, B12, calphosan, glutathione and trace elements.
I've had magnesium IV before, was fine with that, and I do take oral B12/Folinic acid and have been fine with those too (although B injection form is larger dose/surely more activating than oral..)
I have not had IV/subcutaneous of the other ingredients-- calphoasn, gluthathion, so my reaction could potentially be from one of the other supplements in the injection, or from the heppa/nexavir itself...

It doesn't seem to be improving much; was reading about different types of Herx reactions; I wonder too as others have posted if Herx typ reactions --if indeed that's what this was-- can cause permanent damage? Hmm...But only been two months, not nearly permanent in ME/CFS time scales...

 

[cyrusromeo]

I have been a patient of Dr. E for 2.5 years. Wonderful initial visit, very caring and thorough staff. I started the hepapressin shots right away, with the supplements. He said it may get worse before better and a few months later, I crashed for 4 months. Worse than in many years. Then, better again until just over a year ago. Went right back to the beginning; bedbound, in horrible pain and unable to function beyond absolute basics. I was encouraged to up the injections and did until something clicked and I stopped them. I have been ever so slowly climbing out of the hell and going to start the gcmaf. From what I've gathered here, it seems we need to find our own dosage and that's hard to do with the unpredictable and fickle nature of my health. I've also read to stop them if we start to go downhill. He wants patients to do the hepapressin shots with the gcmaf but I will never touch those again. One nurse, when we spoke earlier this week, confirmed that for some, the hepapressin can aggravate symptoms. I wish I had listened to my body at that time, but didn't.
I'm very interested in how those of you on it determine dosage... I have read that larger doses are better, I've read that for some, tiny doses are best. Any help and experience there would be so appreciated and helpful.

Note: Both Michelle and Laura are fantastic about responding and are very caring and willing to help in any way they can.

 

[Sushi]

... I have been ever so slowly climbing out of the hell and going to start the gcmaf. From what I've gathered here, it seems we need to find our own dosage and that's hard to do with the unpredictable and fickle nature of my health. I've also read to stop them if we start to go downhill. He wants patients to do the hepapressin shots with the gcmaf but I will never touch those again. One nurse, when we spoke earlier this week, confirmed that for some, the hepapressin can aggravate symptoms. I wish I had listened to my body at that time, but didn't.
I'm very interested in how those of you on it determine dosage... I have read that larger doses are better, I've read that for some, tiny doses are best. Any help and experience there would be so appreciated and helpful.

Note: Both Michelle and Laura are fantastic about responding and are very caring and willing to help in any way they can.

I think the right lab tests can help determine a dose that might work for you. Assessing your level of inflammation before starting GcMAF is important. An inflammatory cytokine panel (including IL 8) should help with this. C4a and sCD14 are other tests that have been shown to be helpful.

If you are too high on any of these, a lower dose might work better. If they are really high, you might have problems tolerating GcMAF.

Lyme or any of its co-infections also seem to make it harder to tolerate GcMAF. For most, a lower dose seems to be better. Some start really low and slowly raise it to see if they have problems with inflammation. Taking a daily anti-histamine seems to help tolerate it too.

Best wishes,
Sushi

 

[cyrusromeo]

Thanks, Sushi, just received my blood test orders today and mentioned your suggestion of benadryl which the nurse agreed could help. Thank goodness for people like you who share things; I wouldn't have learned that otherwise How are you doing on it? How long did you take it before getting benefit?
Christa

 

[Sushi]

Thanks, Sushi, just received my blood test orders today and mentioned your suggestion of benadryl which the nurse agreed could help. Thank goodness for people like you who share things; I wouldn't have learned that otherwise How are you doing on it? How long did you take it before getting benefit?
Christa

I think I started to feel the first subtle benefits after about 6 weeks and then much more clearly after about 4 or 5 months. I have had to stop a couple of times due to the build up of inflammation, so I think it is very important to start with a low dose and watch carefully for inflammation. If you catch the inflammation early and take a break from GcMAF to let it die down, it is much easier to deal with than if you try to "push through it."

Best wishes,
Sushi

 

[cyrusromeo]

Sushi, if I post the results of the lab work, would you be able to give feedback? I've only heard the Dr. E prescribes low at first, then gradual increase. knowing I need to listen to my body (wish, wish I did with the heparessin shots) I will reach out here for you more experienced folk...

 

[vamah]

Does anyone here have experience with Dr Enlander in NY? Dr Montoya has a 3 year waiting list and the hhv6 foundation recomended Dr Enlander. I am wondering if he has a long waiting list also and if he takes insurance, but also wondering what sort of person he is. Does he listen? Have his treatments helped? It would be fairly expensive for me to travel because I wouldn't want to go by myself. I have a terror of travel and big cities and strange places because I have no sense of direction and get lost easily.

 

[WillowJ]

I have never met Dr. Enlander, but regarding strange places, do you have a GPS? If you can get a device with a gps (even for a short time while you travel), that could help navigation tremendously.

 

[Nielk]

Dr. Enlander has been my doctor for over ten years. He accepts Medicare. I don't know about other insurances but you can call his office to find out. There are a few threads here on PR discussing him. He has his own protocol but is also up on all the new and different treatments. There are no miracle treaemts. It's aatter of finding what will work for you specifically to make you more comfortable and able to function.

I always feel like he hears me and gives me as much time as I need. Most importantly, he really cares about his patients.

 

[*GG*]

I have never met Dr. Enlander, but regarding strange places, do you have a GPS? If you can get a device with a gps (even for a short time while you travel), that could help navigation tremendously.

Sounds like you could take the train or perhaps a bus, probably rather economical, but not the most convenient.

GG

 

[Aerose91]

Does anyone here have experience with Dr Enlander in NY? Dr Montoya has a 3 year waiting list and the hhv6 foundation recomended Dr Enlander. I am wondering if he has a long waiting list also and if he takes insurance, but also wondering what sort of person he is. Does he listen? Have his treatments helped? It would be fairly expensive for me to travel because I wouldn't want to go by myself. I have a terror of travel and big cities and strange places because I have no sense of direction and get lost easily.

HHV6 Foundation is how I found Dr Enlander as well and I've been seeing him for about a year and my impressions are a bit different. He has his protocol that he sticks to 100% of the time with 100% of his patients and he doesn't sway from it. To me that's not a quality medical professional. I got worse on his protocol and when I continued telling him this he was so flustered he had no idea what to do.

If you are anything other than the classic symptoms of CFS (fatigue, brain fog, fibromyalgia) then he seems pretty lost. I have much more severe brain issues and he had no idea what to do with me.

However, he is a nice guy and his heart is in the right place and he is a big advocate for us and this disease. I'm just not a fan of the cookie cutter approach for everyone since everyone's pathway into this disease is different so everyone pathway out will be different. With the same protocol for everyone your bound to get it right some times.

He is one of the few that prescribes Valcyte though so if you have high HHV-6 numbers than he may be a good one to see. If your looking for someone to sit and talk with you and run tests and develop a protocol based on your specific needs, he's not the one in my honest opinion. I'm sure there are plenty here who would contest me on this, though.

 

[Aerose91]

Also, he does not take insurance. If you are scared about finding his place the best bet is to take the train into grand central and grab a cab from there. He is close by so it's under a $15 cab ride. Right on the edge of central park, too so it's a nice area. Also know that he shares an office with a chairopractor so don't freak out if you think you're in the wrong place, I did at first.

 

[Aerose91]

Thanks Ocean, Sushi.
Yes, and just so others reading this can make an informed decision, I meant to add to above post:
his hepapressin/nexavir injections also include: magnesium sulphate, folic acid, B12, calphosan, glutathione and trace elements.
I've had magnesium IV before, was fine with that, and I do take oral B12/Folinic acid and have been fine with those too (although B injection form is larger dose/surely more activating than oral..)
I have not had IV/subcutaneous of the other ingredients-- calphoasn, gluthathion, so my reaction could potentially be from one of the other supplements in the injection, or from the heppa/nexavir itself...

It doesn't seem to be improving much; was reading about different types of Herx reactions; I wonder too as others have posted if Herx typ reactions --if indeed that's what this was-- can cause permanent damage? Hmm...But only been two months, not nearly permanent in ME/CFS time scales...

With my new knowledge of methylation, if you have MTHFR issues, which most of us do, folic acid will make you worse. Methylfolate is what you need. Also, glutathione is a methyl block so taking his hepapressin shots, between the folic acid, b12 and glutathione it will shunt the methylation cycle even further possibly causing us to get worse. That's my take on it anyway- same thing happened to me.

 

[vamah]

HHV6 Foundation is how I found Dr Enlander as well and I've been seeing him for about a year and my impressions are a bit different. He has his protocol that he sticks to 100% of the time with 100% of his patients and he doesn't sway from it. To me that's not a quality medical professional. I got worse on his protocol and when I continued telling him this he was so flustered he had no idea what to do.

If you are anything other than the classic symptoms of CFS (fatigue, brain fog, fibromyalgia) then he seems pretty lost. I have much more severe brain issues and he had no idea what to do with me.

However, he is a nice guy and his heart is in the right place and he is a big advocate for us and this disease. I'm just not a fan of the cookie cutter approach for everyone since everyone's pathway into this disease is different so everyone pathway out will be different. With the same protocol for everyone your bound to get it right some times.

He is one of the few that prescribes Valcyte though so if you have high HHV-6 numbers than he may be a good one to see. If your looking for someone to sit and talk with you and run tests and develop a protocol based on your specific needs, he's not the one in my honest opinion. I'm sure there are plenty here who would contest me on this, though.

Thanks so much for your honest opinion. I'm not sure I could do a cookie cutter treatment approach. I already have a doctor who had proscribed valcyte, so I'm not really needing that. Now I wonder if I should try to get on Dr Montoya's long waiting list and hope for the best.

 

[Aerose91]

@vamah

Like I said there's probably plenty here who will disagree with me but IMO if you've already gotten Valcyte then there's not much more that will separate Dr Enlander. He does most of his protocols based on Dr Montoya so I wouldn't bother with the waiting list for Dr Montoya. Plus 2 years is bullshit - that's not the sign of a good doctor but rather a disorganised one. I've been through the ringer of doctors with this disease- ME is much more complex than the approach Dr Enlander and Montoya take.

Where r u located? And have u had any tests done yet? What are your primary symptoms? I may be able to help you narrow down the search.

 

[vamah]

@vamah

Like I said there's probably plenty here who will disagree with me but IMO if you've already gotten Valcyte then there's not much more that will separate Dr Enlander. He does most of his protocols based on Dr Montoya so I wouldn't bother with the waiting list for Dr Montoya. Plus 2 years is bullshit - that's not the sign of a good doctor but rather a disorganised one. I've been through the ringer of doctors with this disease- ME is much more complex than the approach Dr Enlander and Montoya take.

Where r u located? And have u had any tests done yet? What are your primary symptoms? I may be able to help you narrow down the search.

I'm in the Washington DC area. Over the past 2 years I have had tests for all the typical herpes viruses as well as lyme and bartonella. The only thing positive was hhv6 ( although, you know, lyme testing -- you can never be sure). I was on valcyte for a little over a year, at all kinfsof dosages. My level went from 1:1280 to 1:320, then stuck there and my symptoms haven't improved. My main symptoms are sleep problems, fatigue amd joint and muscle pain.

 

[Gingergrrl]

I live in L.A. but will be doing a phone consultation with Dr. Enlander next week. His office staff was wonderful in answering my logistical questions by phone and e-mail and I quickly got a consult for next week. Now, I have to prepare a bunch of forms and info before my consult so they receive everything and I am prepared with all my questions. I am particularly interested in a treatment that he did with CFS patients called EECP (and I posted about this in another section of the forum.) I will report back more after my consult but my experience thus far has been very positive.

 

[Aerose91]

I'm in the Washington DC area. Over the past 2 years I have had tests for all the typical herpes viruses as well as lyme and bartonella. The only thing positive was hhv6 ( although, you know, lyme testing -- you can never be sure). I was on valcyte for a little over a year, at all kinfsof dosages. My level went from 1:1280 to 1:320, then stuck there and my symptoms haven't improved. My main symptoms are sleep problems, fatigue amd joint and muscle pain.

Right now I'm seeing Dr Sheryl Leventhal at Hudson valley medicine in NY state and she is far more comprehensive than Dr Enlander was. She digs far into your particular body mechanics and is well versed in methylation as well.

 

[franny]

I did the hepapresin injections for 3 months, along with most of the supplements, except for the electrolytes. My brain issues got really bad, my vision was disturbed and i had the feeling that my nerves were being pulled from the inside. I developed an eye twitching I could not control, and mild eye tension in my left eye. Since i had only done the injections for 2 month when this happened, I was advised to continue until the 4th month. I decided to stop after the 3rd month, because I was afraid. I really wanted the treatment to work, but the reaction was interfering with my work so I decided to stop it. I have not come back ever since.
As for him as a Dr. like it has been stated, he is good man, with good intentions. He was caring enough to console me and told me that "things will be better", but did not spend much time with me going over all the testshe did, or the reasons for the treatment. He does a lot of tests, that I am sure are quite interesting to understand. He said that I should talk to Laura about the treatment in case I had any questions.

So, I agree that his one-fit-all approach does not work for all, I would rather see a dr who can spend sometime understanding my body idiosyncrasies and treat accordingly. I did want to participate in one of his studies though. They are a lot more supervised for adverse reactions, but he did not have any going on when I saw him last year.

I have united health care and my insurance covered half the cost of injections for the 3 months I did them. So yes, he does take insurance, I am not sure why someone else said that he doesn't. the injections were at that time at $40 per injection, plus the supplements of course.

 

[franny]

Right now I'm seeing Dr Sheryl Leventhal at Hudson valley medicine in NY state and she is far more comprehensive than Dr Enlander was. She digs far into your particular body mechanics and is well versed in methylation as well.

Hi Aerose91,

Does she take insurance? Checked her site but did not see any information.

Thanks.