anyone seen or seeing Dr. Enlander?

[Gingergrrl]

Since this thread got revived, I wanted to amend my earlier post that I never ended up doing the phone consult with Dr. Enlander and went another route instead. Also his office no longer offers EECP which was the thing I had wanted to ask him about.

 

[Aerose91]

Hi @franny

No she doesn't take insurance. The first visit is $400 and all subsequent visits are $150, not including tests and stuff. I have submitted my bills from her to my insurance co. though and gotten a small reimbursement.

 

[CindyWillis]

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.

I found Dr. Enlander to be incredible at getting me well. My husband and I have been a patient now since 2011 and have almost fully recovered. Take extremely large doses of GCMAF on the weekend and .5 ML of Heppapressin a day and .25 ML of Magnesium and .25 ML of Taurine combined a day, 1 ML of B12 a day and 3 inosines in the morning and night. Am almost 100% symptom free but have to take my very large doses of GCMAF each weekend to remain well at this point still. Went from a wheel chair in public to working several 100 hour weeks in a row without being sick from CFS over the years I have been with Dr. Enlander. I can't be more appreciative than I already am as he really helped me tremendously.

 

[Aerose91]

I found Dr. Enlander to be incredible at getting me well. My husband and I have been a patient now since 2011 and have almost fully recovered. Take extremely large doses of GCMAF on the weekend and .5 ML of Heppapressin a day and .25 ML of Magnesium and .25 ML of Taurine combined a day, 1 ML of B12 a day and 3 inosines in the morning and night. Am almost 100% symptom free but have to take my very large doses of GCMAF each weekend to remain well at this point still. Went from a wheel chair in public to working several 100 hour weeks in a row without being sick from CFS over the years I have been with Dr. Enlander. I can't be more appreciative than I already am as he really helped me tremendously.

Cindy

That's awesome that you've had so much success, congratulations. May I ask you when and why Dr Enlander put you on GCMAF? Were you seeing him for a while before he went that route? I've personally had zero success with him but I'm interested in trying GCMAF and I know he does it, he has just never brought it up to me.

 

[*GG*]

Cindy

That's awesome that you've had so much success, congratulations. May I ask you when and why Dr Enlander put you on GCMAF? Were you seeing him for a while before he went that route? I've personally had zero success with him but I'm interested in trying GCMAF and I know he does it, he has just never brought it up to me.

So why not bring it up to him? Perhaps he just missed it and needs a "reminder".

GG

 

[Aerose91]

So why not bring it up to him? Perhaps he just missed it and needs a "reminder".

GG

Every time I've brought something up in the past he hasn't taken too well to it. It always appeared to me that he has a very set plan of attack for everyone and he doesn't sway from it. GCMAF so far hasn't fallen into the template, I'm wondering how and when it was suggested for you.

 

[*GG*]

Every time I've brought something up in the past he hasn't taken too well to it. It always appeared to me that he has a very set plan of attack for everyone and he doesn't sway from it. GCMAF so far hasn't fallen into the template, I'm wondering how and when it was suggested for you.

@Aerose91 seems that this is addressed at me. I don't see him, never have. Was just thinking of my experience with my Dr, not as well known as Enlander, but remember having a discussion with a fellow patient at a support group meeting, and she was wondering why our Dr did not recommend LDN. I told her that I brought it up to our Dr, so why not ask!

GG

 

[CindyWillis]

Cindy

That's awesome that you've had so much success, congratulations. May I ask you when and why Dr Enlander put you on GCMAF? Were you seeing him for a while before he went that route? I've personally had zero success with him but I'm interested in trying GCMAF and I know he does it, he has just never brought it up to me.

I became his patient in early 2012. The first appointment, he ran tests on me and told me that I had CFS. I was already taking GCMAF .25 ML a week. He recommended higher doses of 100 ML per week so we gradually moved up over several months to that amount. I could quickly see a big improvement in my health with the higher doses. These higher doses have pretty much completely turned around the health of both me and my husband who is also his patient. I would just ask Dr. Enlander if you are a good candidate for GCMAF. I have found that he truly cares about this illness and really tries to help patients. His staff is very caring and responsive to any requests.

 

[roge]

Hi - I posted this on General discussion but I thought could be useful here as well as this thread is about Dr. Enlander and looks like some here are his patients.
.
I used to post a lot on Prohealth ( 2007-2010) and a few posts on here ( last one in 2011 re: growth hormone) but I have been in really bad shape the last few years.
.
I live in Ottawa Canada and I will be seeing Dr. Enlander in 3 weeks as I want to get more detailed testing (mainly immune system) that I cant get here in Canada or if I can it will take years and energy to convince doctors and our public labs, energy and time which I don't have. I am going to have pay out of pocket to fly there, see him and for any tests so I had to think hard about this and I know odds are small he will find something with testing to help me but I know I have to try here.
.
I have severe FM and maybe ME/CFS (not sure ) as my main complaint is tendon and muscle pain and it has attacked my whole body now to the point I could barely walk or even sit 6 mths ago as the burning pain would be too much in those tendons I would be using. Of course I also get fatigue, hypyoglycemia symptoms, sinus headaches and sinusitis and naseau and muscle spasms and sleep myoclonus and of course got no stage 3/4 sleep on my sleep study
.
Anyway, I have already had some testing here in Canada (from 2005-2010) and also in California at Holtorf Clinic in 2007 which includes:
.
EBV, CMV,HHV6 all showed negative IGG and IGM
Coxsackie B2 was + ( past infection)
Parvo B19 + IGG (past infection)
Chlymidia P +IGG and +IGA ( IGA could mean chronic infection I have read )
Mycoplasma P + IGG (past infection)
.
hard to know based on above as past infections don't mean much. but I have always suspected chronic CpN due to that + IGA antibody as well as what feel like recurring sinus infections
..
have had thyroid testing done ( TSH of 3-4 range usually and low borderline antibodies) and I do suspect thyroid problems as well as adrenal and have tried treating (both herbs and meds) with little success
.
CD57 (low normal)
NK cell count (low normal) and function ( was 28 in 2007 with 8-170)
Lymphocyte subset panel showing below normal CD4 and CD8
have had aldosterone, cortisol, acth stim test, b12, vit d testing done
.
Ok so the main point of my post, so these are the following tests Dr Enlander suggests doing initially :
.
I have already done all of these
.
echocardiogram
ekg
EBV, CMV, HIV, Myocoplasma, Cpn, Lyme, babesia, candida, parvo b19, HHV 6
TSH -
T4 free -
complete metabolic panel
coxsacke B (1-6)
thyroid AB
t3 uptake
food allergy profile
vit b12
lymphocyte subset panel 2
methylmalonic / homocystein
CBC
NK cell function
lupus profile
gliadin ab
vit d
hepatic panel
cholestral
rheumatoid arthritis diag
.
.
Tests I have not had done that he suggest are:
storgage special
IL2, IL6, IL10
E. Chaffenensis ab
CEA
lyme
carnitine
HSV 1 and 2 ab
ICG
Spirometry
.
It looks like most of the initial tests are to rule out other diseases and are more mainstream tests (ie. cbc, hapatic , metabolic panel, ect) Considering I have had most of those tests ( some showing abnormalities - mainly immune) I am hoping based on what he sees with my results that I have, that he will do further immune testing ?
.
Can anyone who sees him confirm if and what more detailed testing beyond the above does he do? Do I need to tell him what I want which means I need to do research and figure it out before I get there
.
what about Rnase , I see he has some cytokines up there ( IL2, 6, 10) which I will do but does he do more like a complete panel, what about TH1 TH2 testing to see what parts of my immune system are weaker and or more active. what about b cell testing or any other testing others might suggest
.
what about small intestine bacteria overgrowth ( breath tests), or other stool testing - does he use any other labs besides the mainstream ones in Quest, Labcorp, Sunrise, act)
.
I know this is long ( sorry) and I appreciate you reading and giving me any feedback on testing or anything else for that matter when it comes to seeing Dr. Enlander. I am aware he is more cookie cutter when it comes to treatment and I will cross that bridge when I get to it but my first priority is testing and trying to get the most meaningful tests that will actually help with treatment.
.
Thanks
Kyle Rollwagen

 

[fibrodude84]

What are Enlanders thoughts on LDN. Does he prescribe it?

 

[Scotty81]

Hi,

I see that the question about people's experience with Dr. Enlander was started in 2011, but I wanted to ask for any recent feedback on him.

I’m considering taking my daughter to see Dr. Enlander. In addition to CFS, my daughter has FM, POTS, adrenal fatigue and some GI issues. My daughter has done a 23andme test and she had a Methylation Pathways Panel test, which confirmed some deficiencies in parts of her overall methylation cycle. Her 23andme test also showed some SNPs (A1298C, C677T, and others) which predispose her to some chronic health conditions, although I realize that it is not a guarantee of ill health.

I’ve read several positive posts on how Dr. Enlander has helped certain individuals. And, I realize that no doctor is going to be able to help every patient that walks in the door. However, I have two concerns.

The first concern revolves around Dr. Enlander’s protocol to improve methylation. In this 8-minute video, Dr. Enlander first acknowledges the great contributions that the late Rich Van Konynenburg made to the field of methylation and CFS treatment. Then, Dr. Enlander explains the various supplements in his protocol, and the ingredients in them. One of his supplements contains glutathione; his weekly injections contain this as well. However, if I am not mistaken, Rich suggested fixing the underlying issues affecting the methylation cycle (to naturally increase the body’s production of reduced glutathione) rather than giving glutathione itself. In fact, some others have said that giving someone glutathione would just help reduce the body’s own production of this substance (not a good thing). I suppose that truth may be that a little wouldn’t hurt while one is on the way to recovery, but I have no way of knowing if the amount he’s recommending is too much or not.

My second concern may not be valid, but it has more to do with how he “packaged” his protocol in his video. I got the impressions that if a patient had methylation issues (or perhaps even if they didn’t), he would prescribe his list of OTC supplements to them. His products certainly seem to contain some good choices for improving certain symptoms. But, one of his products contains NAC, N-acetyl-cysteine. I’ve read that NAC is a precursor to making glutathione so you would think that I’d say that this is a good thing, given my concern about giving glutathione vs. one of its precursors. But, if one has the CBS genetic SNP, which my daughter has, one should not take NAC. Again, I could be wrong, but I didn’t get the impression that Dr. Enlander would fine tune his protocol to take into account any genetic polymorphisms that one has. I realize that I might be oversimplifying his treatment protocol from what I’ve gleaned from an 8-minute video. So, perhaps my concern is not warranted. Based on actual experience, do others think Dr. Enlander includes concerns, such as the ones I have, in his treatment plan?

 

[Nielk]

What are Enlanders thoughts on LDN. Does he prescribe it?

Yes. He does prescribe LDN.

Hi,

I see that the question about people's experience with Dr. Enlander was started in 2011, but I wanted to ask for any recent feedback on him.

I’m considering taking my daughter to see Dr. Enlander. In addition to CFS, my daughter has FM, POTS, adrenal fatigue and some GI issues. My daughter has done a 23andme test and she had a Methylation Pathways Panel test, which confirmed some deficiencies in parts of her overall methylation cycle. Her 23andme test also showed some SNPs (A1298C, C677T, and others) which predispose her to some chronic health conditions, although I realize that it is not a guarantee of ill health.

I’ve read several positive posts on how Dr. Enlander has helped certain individuals. And, I realize that no doctor is going to be able to help every patient that walks in the door. However, I have two concerns.

The first concern revolves around Dr. Enlander’s protocol to improve methylation. In this 8-minute video, Dr. Enlander first acknowledges the great contributions that the late Rich Van Konynenburg made to the field of methylation and CFS treatment. Then, Dr. Enlander explains the various supplements in his protocol, and the ingredients in them. One of his supplements contains glutathione; his weekly injections contain this as well. However, if I am not mistaken, Rich suggested fixing the underlying issues affecting the methylation cycle (to naturally increase the body’s production of reduced glutathione) rather than giving glutathione itself. In fact, some others have said that giving someone glutathione would just help reduce the body’s own production of this substance (not a good thing). I suppose that truth may be that a little wouldn’t hurt while one is on the way to recovery, but I have no way of knowing if the amount he’s recommending is too much or not.

My second concern may not be valid, but it has more to do with how he “packaged” his protocol in his video. I got the impressions that if a patient had methylation issues (or perhaps even if they didn’t), he would prescribe his list of OTC supplements to them. His products certainly seem to contain some good choices for improving certain symptoms. But, one of his products contains NAC, N-acetyl-cysteine. I’ve read that NAC is a precursor to making glutathione so you would think that I’d say that this is a good thing, given my concern about giving glutathione vs. one of its precursors. But, if one has the CBS genetic SNP, which my daughter has, one should not take NAC. Again, I could be wrong, but I didn’t get the impression that Dr. Enlander would fine tune his protocol to take into account any genetic polymorphisms that one has. I realize that I might be oversimplifying his treatment protocol from what I’ve gleaned from an 8-minute video. So, perhaps my concern is not warranted. Based on actual experience, do others think Dr. Enlander includes concerns, such as the ones I have, in his treatment plan?

These are excellent questions. I have been treated by Dr. Enlander but only recently have I taken the 23andme test and become more knowledgeable about our methylation problems.

As far as I know, he doesn't customize these supplements. He might leave some out for specific patients but I don't know how he could leave out certain ingredients from the prepared protocol.

I might be wrong though. I have not been back for a while now. Maybe others can chime in.

 

[deboruth]

@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.

 

[deboruth]

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.

Is that negative statement about Dr. Montoya from Aerose91 or Vamah? I'm behind on my social media protocols. In any event, your derogatory remark about Dr.Montoya is incorrect and stems from total ignorance. He is head of the Stanford University institute working on ME and CFS and involved in ALL their trials such as the recent one on abnormality in the brains of ME and CFS patients. He is also the number 1 clinician in the highly populated Bay area, so the number of people who wish to become his patient is enormous. I am shocked at how people find derogatory things to say about this and other extremely dedicated practitioners. He is certainly not disorganized; he has a lot on his plate, all to our benefit. Re Dr. Enlander, he keeps in touch with Dr. de Meirleir and brings in his techniques as well as having practices in common with Montoya, Peterson and other leading docters.
It is very hard to treat this disease because the CDC and NIH put the kibosh on research to learn what really is wrong. Also, medical doctors are extremely constrained by harsh regulatory environments. ME & CFS doctors have been prosecuted simply for treating patients because the CDC says only CBT and GET and maybe a touch of anti-depressants are advisable. It is NOT the CDC launching the prosecutions; it is ambitious local regulators or law enforcement. But the lack of research facilitates opportunistic prosecutions.

 

[Scotty81]

Hi Nielk,

Thanks for your feedback on Dr. Enlander. I'm just curious if he gave you his standard protocol "out of the box" or if he did any sort of testing, like 23andme, to whether you might react unfavorably to supplements like NAC or not. I've read that people with a CBS mutation (one of the things they test for in 23andme) should avoid taking NAC, even though it is a precursor to glutathione, and generally a good thing to give. So, if you could provide more feedback on how your experience was with Dr. Enlander, I would appreciate it.

Regards,
Scotty81

 

[Aerose91]

Hi Nielk,

Thanks for your feedback on Dr. Enlander. I'm just curious if he gave you his standard protocol "out of the box" or if he did any sort of testing, like 23andme, to whether you might react unfavorably to supplements like NAC or not. I've read that people with a CBS mutation (one of the things they test for in 23andme) should avoid taking NAC, even though it is a precursor to glutathione, and generally a good thing to give. So, if you could provide more feedback on how your experience was with Dr. Enlander, I would appreciate it.

Regards,
Scotty81

Hi @Scotty81

I can only speak from my experience with Dr Enlander but he put me on the "out of the box" treatment and it didn't contain NAC but did contain glutathione , which for someone with a CBS abnormality (like myself) it can increase sulphites. His hepapressin shots also contain methyl b12 though so that could create a further problem if you're sensitive to mb12 and have the CBS mutation.

 

[Daffodil]

I agree about Dr. E. having certain things he uses, but I think most CFS docs are like that. Personally, I found other docs to have a more thorough testing protocol. Dr. E. is a very nice man though. Sold GcMAF at a very steep price.

 

[Aerose91]

I agree about Dr. E. having certain things he uses, but I think most CFS docs are like that. Personally, I found other docs to have a more thorough testing protocol. Dr. E. is a very nice man though. Sold GcMAF at a very steep price.

Seems so odd to me that with everyone's path to ME being so vastly different that more ME doctors don't approach patients on a more individual premise. So far I've just felt like another stat in the big protocol that Dr X can put on his resume

 

[Daffodil]

Seems so odd to me that with everyone's path to ME being so vastly different that more ME doctors don't approach patients on a more individual premise. So far I've just felt like another stat in the big protocol that Dr X can put on his resume

I am guessing many CFS specialists hold patents, sell supplements, do studies with drug companies, hold stock in drug companies, etc etc.

 

[Little Bluestem]

However, if I am not mistaken, Rich suggested fixing the underlying issues affecting the methylation cycle (to naturally increase the body’s production of reduced glutathione) rather than giving glutathione itself.

Rich did back off from directly supplementing glutathione. IIRC, he did use glutathione precursors, but I cannot quickly find anything to support this.