Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

the most effective (non-conventional) lab tests to do to get treatment?

Discussion in 'General Treatment' started by uni, Dec 6, 2011.

  1. uni

    uni

    Messages:
    52
    Likes:
    2
    Hey guys,

    I know there is a thread in the Diagnostic Section on the different tests that people have done. I am wondering what are the top 4 or 5 tests that I could do that will yield results and help me formulate a good treatment plan? I'm looking at more non-conventional lab tests - not the ones that would be run by your doctor through Quest or LabCorp.

    The ones I'm thinking of are the Methylation Pathway Panel (suggested by Rich), NutraEval from Genova, CSDA (maybe The GI Panel from Diagnos-Tech), a food sensitivity test - whats the most accurate one? I heard sometimes these aren't very accurate, maybe a test for toxic metals - are these accurate? I have never been noticeably exposed to anything toxic.

    Thanks
     
  2. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    75
    Switzerland/Spain (Valencia)
    I would also recommend the Mitochondrial Function Profile, as it can be ordered through Dr. Myhill.
     
  3. hubcap_halo

    hubcap_halo

    Messages:
    53
    Likes:
    0
    Washington, DC
    The tests you're thinking of are great ones to do.

    Also test for metals via 24 hour urine challenge. You can do it through LabCorp or quest I believe. Mine was covered by insurance.
    The most reliable test is a 24 hour urine challenge. Your doctor can inject you with DMPS (will provoke mercury) and EDTA (will provoke lead and other metals) and
    then see what comes out in your urine.

    If our bodies can't detox metals on their own, they will hide them away in our fat tissues and other places. That's why blood and even hair analysis is not as accurate as the urine test.
    Good luck.
     
  4. hubcap_halo

    hubcap_halo

    Messages:
    53
    Likes:
    0
    Washington, DC
    Methylation Pathway....

    PS I assume you are going to consult with rich after doing the Vitamin Diagnostics Methylation Panel Pathway test?

    I only ask because I don't know of any doctors who can interpret the results other than Rich (Phd:)...

    Unless the test has changed in the last two years, which could be the case and then ignore this. :)

    I've had genetic testing and know my gene for Methylation -- the result is I don't detox properly.
    So I take Thorne Methyl Guard which, as I understand it, is an all-one decent Methylation protocol (minus the SAMe).

    But having that Vitamin Diagnostics test done, and seeing if Rich would interpret it, that would be great.
     
  5. jonnyboy

    jonnyboy

    Messages:
    41
    Likes:
    25
    Kent, UK
    I'd also recommend the mitochondrial profile thru Dr Sarah Myhill, it gives a very good indication of where you are presently at in terms of severity. You don't have to be a patient of hers to get it done either. You can just ring up her office to get it arranged.

    Someone also put together this paper, with a long list of patients results, and there is a very stong correlation between your mitochondrial score and your ability level.

    http://www.theoneclickgroup.co.uk/d...son Paper - Biolab ATP CFS function Study.pdfhttp://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Craig%20Robinson%20Paper%20-%20Biolab%20ATP%20CFS%20function%20Study.pdf
     
  6. xrunner

    xrunner Senior Member

    Messages:
    843
    Likes:
    677
    Surrey
    Assuming the basic tests (blood biochemistry, thyroid, etc) usually run for a CFS diagnosis have been done, I would regard the following tests as helpful:

    comprehensive stool test (parasites, bacteria, yeast etc)
    infections panel (virology, bacteria etc)
    health risk profile (Biolab in London) or similar
    test for coeliac
    Lyme western blot but only by IgeneX
    Dr Shoemaker's visual contrast test (can be done online)
    muscle testing done by a good kinesiologist/naet practitioner for sensitivities to foods, supplements, meds etc

    I can't comment on the helpfulness of the methylation panel, although I would have thought that a trial of the methylation protocol would tell you whether it can help you or not without the need to spend money on such test, but I'm not an expert on the subject.

    Among the most useless tests, I have ever done:
    mitochondrial tests and all accessories run by Acumen
    heavy metals tests
    genetic profiles
    food sensitivity tests
    organic acids

    All such tests are either quite unreliable or, like the mitochondrial test, are a crude simplification of the metabolic imbalances that may occur in CFS and won't identify the exact causes of the problems they highlight so won't help in determining relevant treatment. In addition challenge tests are a hazard and should be avoided. If you happen to have a genetic weakness or other kind of block for detoxing metals, say mercury, a challenge test can mess you up big time and jeopardise any chances of recovery.

    all the best
     
  7. Sparrow

    Sparrow Senior Member

    Messages:
    691
    Likes:
    858
    Canada
    I would say that the methylation panel and mitochondrial function panel are good tests, but my feeling on both of them is that if you have ME/CFS, you can probably predict what the results will be at least in general, and therefore begin treatment without the specific numbers for you. That said, I had the mitochondrial panel done and found the results helpful - it's nice to know which areas are particularly low for you so you can give them a little extra, and which ones you maybe don't need to load up on so much.

    From the research I did, YorkTest in the UK seemed to be the most reliable food sensitivities test if you're interested in getting that done. You can mail them your sample from elsewhere if desired. I did one through a different lab that did IgE as well as IgG testing (IgE is the more "conventional" and widely recognized type of allergy - like to peanuts, etc.). Found out I had a couple of IgE allergies I didn't know about (good info to have!), and a pile of IgG ones. I've avoided the foods, but don't know how much difference it's made. I don't regret having the test done, though. I will say that there was WAY more to my food/digestive/stomach issues than those allergens, though. Fructose, yeast, lactose, and lots of other things can play a roll too. So identifying the allergies didn't fix anything, like I was hoping it might.

    If you might be interested in going the anti-viral route, some viral testing seems like a good bet. I can't grab the link right now, but if you Google Stanford University Chronic Fatigue Syndrome, the Stanford site has a good listing of the tests involved in that side of things.

    Natural Killer Cell function I'm getting done, but it is again one of those that I think may not be essential just for choosing useful treatments. It's probably safe to use some immune modulators on the assumption that your numbers wouldn't be high.

    The heavy metal challenge tests are indeed a bit controversial (as are lots of tests). Andy Culter has a lot to say about the benefits of doing a hair test instead. I'm sure you could search for more info about him. After looking into the options myself, I decided on the hair test.

    All in all, I would say that there is a lot of valuable treatment you can get into without any specific numbers at all. Which goes against my natural instinct, but I am realizing as I go that if there's enough research to say that certain abnormalities come along with having ME/CFS in the first place, that my money might be better spent on adding another supplement rather than getting another test.

    Good luck with the journey!
     
  8. jonnyboy

    jonnyboy

    Messages:
    41
    Likes:
    25
    Kent, UK
    Just like to add an addition to my earlier comment on the mitochondrial profile tests. I found it useful in determing how severe you are, and for me it was great to get confirmation that something physical was wrong, as GPs had me doubting myself.

    On the other hand, I havent found that treating the deficiencies so far has made a blind bit of difference. That said all the supplements i took were the oral kind, and I have since found out that I have systemic candidasis and low stomach acid, so I probably havent absorbed many of the supplements ive taken anyway.
    Like another x runner says, the tests are only good at highlighting problems, without suggesting why or suggesting treatment. The translocator proteins tests showed I had benzoquinone and it was this that was really lowering my score on the mitochondrial profiles. However without knowing where the benzoquninone came from in the first place, its kinda hard to know how to treat it and avoid it.

    Like Sparrow says above, some of the tests are good at confirming cfs/me. But you probably already know you have it, and already know how severe you are.
     
  9. *GG*

    *GG* Senior Member

    Messages:
    6,111
    Likes:
    4,693
    Concord, NH
  10. uni

    uni

    Messages:
    52
    Likes:
    2
    thanks guys

    does anyone know what the best CSDA is? I hear about Metametrix and Diagnos-Tech a lot - which one should I go for? I've already done a parasitology test with Doctor's Data and it did not find anything, but I'm not sure how accurate it is. I definately have dysbiosis according to DD test. Also, maybe the parasitology center in Arizona?

    I've thought about Lyme before, but my symptoms don't seem to be that bad I guess. I have a lot of the symptoms, but not as severe as they are usually reported, and no widespread joint pain.

    and thanks for the recommendations on the food allergy tests, I've heard of the York test and it seems to be a reputable company
     
  11. sianrecovery

    sianrecovery Senior Member

    Messages:
    815
    Likes:
    662
    Manchester UK
    I guess we all find different things useful. I found the mito panel and some of the other acumen tests very helpful. I did my stool analysis via Genova labs, and found I had blastocytosis. Even my bog standard doc FBC tests revealed some stuff. I also did salivary testing for cortisol and other hormones. I did the York tests, but have to be honest, I think the they, and most others doing food sensitivity/intolerance tests are selling an empty box.
     
  12. Gavman

    Gavman Senior Member

    Messages:
    316
    Likes:
    92
    Sydney
    Food allergy testing was bomb for me. I'd also check out the blood type diet. Being blood type O and trying to be a vegetarian messed me up bad, when i followed that diet with more proteins and fats i improved.
    I think psychological testing is important to, to know your weaker areas you can observe the stress more and limit your exposure or problems towards it.
     

See more popular forum discussions.

Share This Page