anyone seen or seeing Dr. Enlander?

[vamah]

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.

Um, I'm pretty sure you are confusing me with someone else. I never made any negative comments about doctor montoya. Before acusing someone of 'total ignorance" you should probably make sure you have the right person. I have always admired montoya's work and would have liked to see him, but I am on the other side of the country from him.

 

[Ytfb63]

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.
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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.
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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.
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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
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Anyway, I have already had some testing here in Canada (from 2005-2010) and also in California at Holtorf Clinic in 2007 which includes:
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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)
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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
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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
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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
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Ok so the main point of my post, so these are the following tests Dr Enlander suggests doing initially :
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I have already done all of these
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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
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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
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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 ?
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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
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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
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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)
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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.
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Thanks
Kyle Rollwagen

Hi Kyle,

I know it's been awhile since you made your post. I hope you received the answers that you needed. I also hope your health has gotten better since and Dr. Enlander was able to help with your symptoms. I had my second visit with Dr. Enlander and I'm reaching out to you because I noticed that your post contained things that I was tested high for such as Cocksackie Virus Group B Ab, Clamydia pneumoniae IgG, Parvovirus B19 IgG/IgM and Mycoplasma pneumoniae IgG/IgM Abs. I was given the Dr.'s standard protocol of supplements (Gear Up Plus, Betamax Spray and Hepappressin) and I don't know if this is enough to get rid of these viruses. But, I wanted to know if you have had any of these since I read in your post "(past infection)" and if so, what medication(s) were you able to take to treat these? I'm not familiar with these viruses and would appreciate any feedback so that I can become knowledgeable about this and help myself feel better since I sought this doctor out because I was suffering with extreme fatigue for a very long time. Thank you for listening and I hope to hear from you.

 

[Scotty81]

@Ytfb63

Hi Kyle,

I'm sorry that I can't respond to your specific question as to what other tests that Dr. Enlander might order. I can tell you that I had a 1-hour telemedicine phone call with him, as a precursor to determining whether to go see him or not. I believe that all of the tests he recommended were the ones that he had listed on his website.

From my phone, my impression was that he believes the root cause of CFS/FM is a lurking virus (my words, not his), or at least the remnants (I think he used the word imprint) of a virus. As such, it was also my impression that he would recommend MAF or GcMAF as an immune system adjuvant to boost the immune system. So, it sounds like he will be pretty "cookie cutter" as you say.

I did ask him about other potential root causes, such as genetic predispositions toward having methylation issues. His reply was that he has hired a geneticist to do research on this issue. However, I am aware that there are other practitioners who utilize the genetic results of a 23andme saliva test to determine such genetic predispositions. (It is $99 in the U.S.). I'm sure if you do a search for "23andme" in Phoenix Rising, you will find posts on it. Again, my impression was that Dr. Enlander would only incorporate these results into his treatment protocol if you bring it up. And, this test just indicates one predisposition toward having various issues, it doesn't guarantee that one will have such issues.

One good test that wasn't on Dr. Enlander's list is the Methylation Pathways Panel Test, by Health Diagnostics (formerly Vitamin Diagnostics). ($325 in the U.S.)This is the test that Dr. Rich Van Konynenburg designed with that lab. It will tell you if you have low glutathione, which is your body's major antioxidant. It will also tell you how well your folate cycle is doing. I was able to review the results of this test with Dr. Enlander, and he did confirm that abnormalities found.

One thing we didn't get to discuss was the notion that CFS/FM symptoms could be due to other things like 1) small intestinal bacterial overgrowth (SIBO), 2) intestinal permeability (leaky gut), 3) mold exposure, 4) food intolerances. My personal experience is that I have found that it is some functional medicine docs, some naturopaths and some chiropractors that have considered these things as possible root causes. And, my general impression of classically trained doctors is that they don't consider these things as potential root causes.

There are specific tests for each of the above items. So, I would do some research on the above things just so you can be knowledgeable about them as well.

Good luck and hope you get the answers you need.

Regards,
Scotty81

 

[deboruth]

Um, I'm pretty sure you are confusing me with someone else. I never made any negative comments about doctor montoya. Before acusing someone of 'total ignorance" you should probably make sure you have the right person. I have always admired montoya's work and would have liked to see him, but I am on the other side of the country from him.

I hugely apologise for somehow sending my criticism to the wrong person. I myself winced on re-reading this and seeing that I used the phrase "total ignorance," which is not appropriate in almost any context. I can see that I intended to respond to unfounded rumours and unjustified criticisms about our doctors, such as Montoya, and apparently rose to the defense with somewhat excessive ire. I don't know how I mixed up the addresses or mailboxes, but I seem to have done so. I commend your moderation in response. I hope this is going to vamah.