The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Dr. Enlander Testing - a few questions

Discussion in 'General ME/CFS Discussion' started by roge, Oct 8, 2014.

  1. roge

    roge

    Messages:
    32
    Likes:
    9
    Hi
    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
     
    Last edited: Oct 11, 2014
    golden likes this.
  2. roge

    roge

    Messages:
    32
    Likes:
    9
    there was not a space to separate the tests I have already done and those I have not so I am reposting those that I have not and most of these I will likely do


    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
     
    golden likes this.
  3. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,178
    Ventura, CA
    If you get lyme and co infection testing make sure you test through IgeneX labs, also imo your symptoms sound a lot like bartonella/babesia infection. I don't know where you got the babesia test done though I did see you tested before. The thing though if you do have lyme or the compounded infection you may usually test negative at first, your immune system will be too depleted to make anti bodies until you are further in treatment for some cases.
     
    roge likes this.
  4. roge

    roge

    Messages:
    32
    Likes:
    9
    Thanks Martial. yes I agree about many infectious tests being negative due to weak immunity rather than not actually being infected.
    .
    I said I had Lyme test done but I have not but , well had the Canadian test but Im sure that is not reliable. anyway, odds are low I have Lyme it but I should do the test still. I had Bartonella (cat scracth disease) but was negative (how reliable not sure) and had no bartonella skin rashes, although I do have skin issues, ie. itchy little raised things that get worse in winter here - maybe when gets dry. I have lived with cats for years and why I thought I might be a good candidate for bartonella.
    .
    I thought I had Babesia test but it was Brucella I had so I will get Babesia - this is a parasite and I could be susceptible as I did have hookworm infection ( how I got I have no idea - maybe my cat?) a few years ago and after some anti- parasitic meds, it cleared up as I was having diarehea everyday for 3 weeks but then stopped after the med. It was a good lesson that not all one's symptoms (especially new ones) are just FM or ME/CFS as there can be some that have a more identifiable cause and be treated as my hookworm was.
    .
    Is there no one else out there (especially dr. enlander patients who have been through testing) who have any input on my post or even anyone for that matter on what more detailed immune testing would be best
     
  5. roge

    roge

    Messages:
    32
    Likes:
    9
    and yes Martial, I will use Igenex. is that better than infectolab in Germany?

    also, I have read to take antibiotics a few days before test so bacteria and or parasite will have better chance of being detected or something along those lines - if so, anyone know the exact regiment to use for that - thx
     
  6. roge

    roge

    Messages:
    32
    Likes:
    9
    so there are no dr. enlander patients here that can share their experiences with my questions above mainly regarding testing?
     
  7. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,324
    Likes:
    4,360
    London
    Hi Roge,

    I saw Dr Enlander in the UK. Maybe it would be best for one of his USA patients to comment on testing as they may have access to a whole lot more.

    When I saw him I had only a few tests but he examined these closely before making suggestions for treatment. The more tests that you want him to go through the more time he will need to spend on these.

    I don't think that detailed immunogical testing will change the ideas that he has for treatment. I only had a basic TH1/TH2 test and NK cells and TNFa and a few others of that type.

    The main thing will be getting a diagnosis and you are not sure about the ME/CFS and I'm not sure what other testing he will need to determine that. I already had a ME diagnosis from a previous respected ME doctor by the time I saw him.

    Sorry not to be more help.
     
  8. roge

    roge

    Messages:
    32
    Likes:
    9
    Hi ukxmrv

    Thanks for your reply. Every little bit of help counts.

    Can I ask more detail on that Th2/Th1 test? I have read the way to measure that is by cytokines or is there an actual test that can directly assess TH1/TH2?

    Of the tests you had, were any abnormal or low normal? So he thought you had Me/CFS then based on what?

    My issues are more pain than fatigue and why I think I have FM, but I know there is a big overlap in symptoms with ME/CFS and I do have symtpoms also suggestive of ME/CFS and me/cfs can cause pain in some as well. It sure would be nice to know though just how separate these two disease are as they are surely related but how close no one knows yet.

    Any patients of Dr. Enlander who saw him in USA want to chime in on testing - I would appreciate

    Kyle
     
  9. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,466
    You've done your homework. Share your history with him, naturally. I suspect he will run the tests you've already had again; time has passed, and so too may your values have changed.

    I would recommend asking him to run tests you want to have run. Specify them. When I have spoken with him I found him to be a man who knows his own mind, but will discuss openly your concerns/desires. If you know your stuff, he can be fun to talk to, from pathogens to politics. :)

    You're coming from Canada? So you will pay out of pocket? He does tons of labs...I'd ask up front for an estimate - but I need to be cautious with money, and you may not have that concern. He used Quest for my labs; I don't know if he is open to other labs like IgeneX, but it cannot hurt to ask.

    Edited to add: He did a boat load of allergy tests. Relative to TBD's, I don't see a C6 Peptide run by him for me - but I was pretty much a sure thing with Lyme. If I were you, I would request a C6 peptide if you're at all concerned about the possibility of Lyme. Don't know what it costs, though.
     
    Last edited: Oct 19, 2014
  10. roge

    roge

    Messages:
    32
    Likes:
    9
    Thanks Duncan for your thoughts and suggestions - appreciated.

    While I would like to have tests run again I can't as I don't have the money. I have around $1000 - $1500 allocated for testing and this will be for more in depth testing ( immune and some infectious). I already know ( well 90%) based on the testing that I have had in Canada that I don't have another disease of known etiology so I am not going to spend my own money on those tests again even if they were run a few years ago.

    I have a general idea of what I want but also open to what he might suggest or anyone here. I asked ukxmrv who posted above what the th1/th2 test was that he had as I cant seem to find any test at Quest for that. Anyone here know of a cytokine panel that Quest or Labcorp does like what Dr. Klimas orders or do you need a speciality lab for that?

    I would imagine he should be open to Igenex and other similar labs.

    I actually got a few price estimates from the clinic and I was shocked a simple Chlymadia Pneumonie IGG, IGA, IGM test was $550 !!! I coudnt believe this so I called Quest myself and they said it was $160 ( which makes more sense) so I am not sure why they had $550. Not sure if I pay for labs at clinic or at the lab but after this my confidence has been shaken in paying at the clinic so I think I will pay at the actual lab. I hope it was an honest mistake ( them quoting me $550 when in fact it is $160). I have read the front office is good and especially Laura so I will assume it was an honest mistake.

    I think the odds of me having Lyme are very low and why I probably wont get a C6 peptide but thanks anyway Duncan

    I leave next Wednesday morning.

    Cheers

    Kyle
     
    duncan likes this.
  11. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,611
    I have been a patient of Dr. Enlander in NY for the past ten years.

    I have Medicare insurance which he accepts. This insurance also covered all my lab work through Quest.

    I would be very upfront with him. Tell him the most you can spend and depending on you results an history he should be able to pick what is important.

    If some if these tests are covered for you in Canada, can you get them done there before you come? This way he can look at them as current results.

    As far as Lyme. He has been using Quest but, I have heard from another patient that if you insist on Igenex, he will use it.

    He never took any stool tests.

    I would only take tests that if the results are out if range, there could be possible treatments for you. This as a way to conserve money.

    good luck to you.
     
    Valentijn and Sushi like this.
  12. roge

    roge

    Messages:
    32
    Likes:
    9
    Thanks Nielk for your thoughts and suggestions
    appreciate the post.

    agree about taking just tests that if abnormal there is some treatment but even that is not that straight forward
    ie. if get some immune testing that shows weak, not like there is some precise treatment for it ...

    quite surprised he doesn't use Igenex as I thought Quest is not nearly as good

    I am going to ask a question in a new thread about best non mainstream labs in usa for immune system testing, ie like a red labs in Belgium
    is there a lab like that in usa? if anyone wants to answer here, please do so

    cheers
    kyle
     

See more popular forum discussions.

Share This Page