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.
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Recommended testing for methylation block?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by switters, Jan 20, 2012.

  1. switters

    switters

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    I'm wondering what the current consensus is on the best testing to identify a methylation block (and thus determine who might benefit from the protocols discussed here). From what I gathered from searching the archives, the two recommended tests are the Genova Diagnostics Metabolic Analysis Profile and the Vitamin Diagnostics Methylation Profile. I can't find any information about the VD panel online, so I just wanted to check and see if it's still available, and still recommended.

    Would screening for MTHFR with something like 23andMe be helpful as well?
     
  2. Freddd

    Freddd Senior Member

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    Hi Switters,

    At the bottom of http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics is the latest symptoms list. Check out which symptoms you have. That can tell you you have a methylation problem. Actually since it includes all the symptoms of ME, FMS and CFS and a lot of those are deficient methlation symptoms, and that you are here at all becasue you have CFS/FMS/ME or something including those symptoms, indicates you have a methylation problem. If you have any skin problems, lung problems, digetive track problems, mouth irritations, sensitive teeth, painful tongue, rashes, dermatitis of various sorts, lack of energy, blood abnomlaties of many sorts, neurological prob;lems, muscle problems etc do you have any doubt? The answers to those questions and a single dose trial of mb12, adb12 and metafolin will give you the 85% answer as to whether you can benefit. It misses people with other missing cofactors and it misses people with only CNS-deficiency only problems and with only long to respond symptoms. It can save you hundreds or thousands of dollars. That is an advantage of a questionaire. Also, if you check yourself against the whole list it can give some hints as to which specific items you might be most reponsive to.
     
  3. switters

    switters

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    Hi Fredd,

    I'm a clinician, so I'm interested in testing for my patients.
     
  4. Freddd

    Freddd Senior Member

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    Hi Switters,

    The items on that list came about by virtue of asking about 1000 people about their symptoms and then observing their responses to mb12 at first, and later mb12 and adb12, within 2 hours of putting it in their mouth, and a smaller series later yet again, adding the metafolin. Then these symptoms were for the most part only those that responded to mb12, adb12 and metafolin. If the history of these symptoms is done by decade of life, sequential patterns develop and one can watch how the deficiencies develop. So the children may have faillure to thrive in the most severe situations, sleep disorders includng night terrors, lots of streps, growing pains, skin problems, canker sores, angular chelitis, IBS all varieties, suspect possibly Osgood Schlatter's and Gynecomastia at puberty and also gynecomastia in 50s as b12 levels fall affecting testosterone, though they are not on the list because the evidence isn't of sufficient quantity yet because of collection problems.

    The basic problem with the testing, and I come from the insurance backround, won't generally be paid for and becomes a barier for many partients if they are still able to work and/or qualify for insurance. In the uninsured populaltion another $1000 of testing can be an insurmountable barrier to treatment. Further even if the insurance pays for the serum cobalamin, serum Hcy and urine MMA at best they will generally pay for oral cycbl or 1 cycbl injection per month which is a really BAD joke that will leave them sick. Further the testing won't tell you how much they will be helped or not. There are studies that say all this about these tests and the problem of using the b12 bound in HTC2 test also as that does not account for the effect of diffusion. The will only tell you that something is very wrong at best. Since studies that admit by symptoms rather than test results and use methylb12 have better results with, in one study, 63% of the responders who would not have been admitted to the study by their test results, had average serum cobalamin over 700pg/ml intially and as high as 1500pg/ml (with high cutoff being 900-1100pg/ml, most testing merely results in denying treatment to people who need it. If the methylation panels are done they don't carry any weight with insurers and cost a lot of these people more than they can afford for a years worth of care. A paper or computer based screening test that works (predicting response) is worth it's weight in gold. And besides it will catch most of the people who can benefit if they are given the proper directions before taking it.
     
  5. richvank

    richvank Senior Member

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    Hi, switters.

    As you can probably see, we don't really have a consensus here about this, at least not yet.

    If the goal is simply to determine whether there is a partial methylation cycle block, I would suggest running the Health Diagnostics and Research Institute (formerly Vitamin Diagnostics, Inc.) methylation pathways panel. This is a blood test, requires an order from a physician or a chiropractor, and costs $295, including the mailer to ship the samples to the lab from within the U.S. The contact information and a guide to interpretation of the results can be found in Part 7 of my documents (in the General Wiki pages of these forums, accessible at the bottom of the "Forum" page). This panel was designed specifically for this purpose, and is used in both autism and ME/CFS. It gives direct information about the status of the methylation cycle, the folate metabolism, and glutathione. Dr. Neil Nathan, M.D. and I have validated this test in a clinical study, in which we showed that the simplified methylation protocol gave significant improvement over the course of a 6-month period as measured with this panel and with patient rating of symptoms. A report on this study can be found here:

    http://www.mecfs-vic.org.au/sites/w...Article-2009VanKonynenburg-TrtMethylStudy.pdf

    Beyond this panel, if it is desired to obtain additional data that can help in treatment decisions, there are some other tests that can be helpful. As Freddd mentioned, extensive testing can be costly. For some patients, the costs are not a problem, and they can order what they want. For most, this is not the case, and they need to prioritize and get the most value they can for the resources they have. I would suggest the following additional tests, if the resources are available, starting with what I think is the most helpful and cost-effective, and working down to others that are helpful if it is feasible to run them:

    1. Genova Diagnostics Metabolic Analysis Profile or MAP (This is a urine organic acids test. Somewhat similar tests are the Metametrix Organix panel and the Great Plains Lab OAT.) This type of test looks at several aspects of the overall metabolism, and can give information about vitamin and mineral deficiencies. The MAP includes both methylmalonic acid and formiminoglutamic acid and can therefore give indirect information about the status of the methylation cycle and the folate metabolism. This panel can also give indirect information about the status of glutathione.

    2. Plasma amino acids panel. I like the Metametrix 40 plasma amino acids panel, because the printout is easy to interpret, but Life Extension offers a 40 plasma amino acids panel at a lower cost. Genova Diagnostics offers one with 42 amino acids. Doctor's Data offers one, also. I like the plasma data, because it's closer to the cells. However, the urine amino acids data is helpful, also. It is more sensitive, but requires some interpretation, because it depends on kidney function. It's very helpful to have this one together with the organic acids panel, because they help to interpret each other.

    3. Toxic and essential elements. I have most of my experience with the Doctor's Data urine panel, but there are others, for both urine and blood (whole blood or red blood cells). These panels are helpful for detecting mineral deficiencies as well as assessing whether toxic metals are an important issue in a given case. If the toxics are too high, they may prevent lifting of the partial methylation cycle block. There are also hair tests for minerals and fecal tests for toxic elements that can be helpful.

    4. If there are problems with the digestive system, comprehensive stool testing is needed. I like the Diagnos-Techs Expanded G.I. Panel, but there are also stool tests offered by Genova Diagnostics, Metametrix, and Doctor's Data.

    5. Beyond these, there are other tests that I suggest depending on the issues that a particular person has. If Lyme disease or its coinfections seem like a good possibility, then I suggest Igenex testing. There is a new culture test offered by Advanced Laboratory Services that promises to be more definitive. If mold or other biotoxin illness seems like a good possibility, I suggest the visual contrast sensitivity test offered by Dr. Ritchie Shoemaker at www.chronicneurotoxins.com, and if it is positive, then an ERMI test of the home by www.mycometrics.com and the HLA panel by LabCorp. If hemopyrolactamuria (HPU) looks like a good possibility, then I suggest the HPU test from Health Diagnostics and Research Institute. If heavy metal toxicity looks like a good possibility, then I suggest a DMSA-provoked urine collection test, as from Doctor's Data. If entrenched viral infections appear to be present, then I suggest serum immunoglobulin testing for the range of viruses commonly found in ME/CFS.

    There are others, but I think I will stop here. There are some combination profiles, such as the Genova Diagnostics NutrEval profile, and the Metametrix ION profile. These incorporate some of the above tests and some others. They may not be optimum sets of tests, but the combinations can be less expensive, and a lot can be learned from them, especially about nutrient deficiencies, but also about the metabolism in general.

    I view the genetic polymorphism tests as interesting and as having a lot of potential for the future. Amy Yasko's nutrigenomic panel can be of some help, as can the less expensive but more comprehensive 23andme.com panel. These give tendencies, but do not give direct information about what is actually going on in the biochemistry at present. They can be helpful in trying to understand why a particular person became ill.

    The interpretation of the above tests is not always straightforward. It takes some experience to understand how they fit together. The book that is sold by Metametrix is very helpful, but it is also necessary to understand the biochemistry of ME/CFS to properly interpret these tests, and that is not included in the book.

    Best regards,

    Rich
     
  6. switters

    switters

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    Rich,

    Thanks so much for the comprehensive rundown. I've seen your document on interpreting the methylation panel, which is very helpful. I already have an account with Metametrix and use them for stool testing, so I will look into their other profiles that you mentioned.

    I've been reading up on your documents in the Wiki to educate myself more on the biochemistry of ME/CFS, and I hope to learn more. What would you suggest as an additional educational resource for this?

    Is there an interpretation guide similar to what you've written for the methylation panel for any of the other tests you've mentioned, particularly the Metametrix Organix and plasma amino acids panel?

    I'm going to run some of these tests on myself, and speak to Dr. Nathan about the results next month. Will be a good learning experience, and might help me further improve my own health. (My own journey with illness is what brought me to the field of medicine in the first place.)

    Thanks again for your help - I really appreciate it.
     
  7. rydra_wong

    rydra_wong Guest

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    I have a different take on testing. My opinion is that the first test should be the cheapest and quickest test. Why spend a lot of money on testing genes etc or even a full extensive nutritional profile of the methyl cycle if you don't know you have this problem? Get a homocysteine test. This runs about $60 and is covered by most insurance. If your homocysteine is anything other than 6.3 or damn close (mine is 6.1 and that's good enough) then you have some sort of a methylation problem and should either supplement as Freddd suggests and/or investigate further.

    Rydra
     
  8. switters

    switters

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    Sorry, I forgot to mention that I work in a somewhat unique way with a particular patient population. I begin with a case review, which includes a fairly comprehensive blood panel with markers for blood sugar, oxygen deliverability, metabolic/immune function, iron status, etc. It includes serum B12 and homocysteine, as well as a CBC (MCV can be a helpful indicator of frank B12 deficiency, of course). So the basics are covered.
     
  9. richvank

    richvank Senior Member

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    Hi, switters.

    If you haven't already viewed the video or scanned the PDF slides from the seminar I presented in Skovde, Sweden on October 1, 2011, I would suggest checking them out. The video is over 3 hours long, in 3 sections, and I was able to get into considerable detail about the biochemistry of ME/CFS. They can be found here:

    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

    For interpreting the Metametrix tests (as well as similar tests offered by its competitors), the best reference is the book they offer on their website (Laboratory Evaluations for Integrative and Functional Medicine, by Lord and Bralley). They also offer a smaller handbook, but I think the more detailed text is more helpful.

    I wish you success in improving your own health, and in learning to interpret these tests.

    Best regards,

    Rich
     
  10. switters

    switters

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    Great, I just ordered all 3 of their books. Will watch the video and the slides as soon as I'm able. Thanks again!
     
  11. Freddd

    Freddd Senior Member

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    Hi Switters,

    Boy, what it would be like to not have to worry about the cost of tests. I would give one small hint, look at the blood tests keeping in sight which ranges have changed since 1960 as some of them have been affected by the chronic b12 and folate deficiencies and who knows what else plaguing the USA population and the abnormal has become average. My internist came into the exam room a couple of years ago and said "It looks like you have this enlarged red cell situation under control. No alert any more. We looked at the numbers from a year before and the new ones and MCV was unchanged at 99.8 with corresponding MCH. The lab alert level had been changed from >96 to >100 (up from >93 not many years before) and this year its creeping up to >101 at some labs at least. I had multiple docs (like a dozen over 15 years) ask me about alcoholism for my CBC results. I didn't drink because like many I couldn't tolerate it and they also asked about excessive bleeding for the same CBC results. Not one, ever, homed in on b12 and/or folate deficiencies, as I was taking cyanocbl and folic acid daily. There are a lot more tipoffs than Hcy, MMA and serum cobalamin. The tests Rich brought up should find a lot more results of a broken system if they are understood. Interpretation is everything. So best of luck.
     
  12. Pea

    Pea Senior Member

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    This was my friend D - he ALWAYS had low RBC and high MCV. This past July MCV was 100.5. PCP never noticed a thing, even though he was complaining every year and it's why he went in for the obvious - being tired, achy muscles, always cold. Wish we had had a Switters.

    That was another weird symptom I noticed - have known him for 25 years, never been a big drinker, but last fall it started where he could not tolerate much alcohol at times. Never made sense of this until I saw it in Fredd's list.
     
  13. Freddd

    Freddd Senior Member

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    Hi Pea,

    For this stuff, it's the combination of all srts of things. For instance, the old b12 deficiency trinity was "beef-red burning tongue, abnormal fatigue and tingling hands or feet". Each of those has more than 1 possible cause. But together they always point at b12. In real life it's more like choose 12 symptoms from col A, 23 symptoms form col B, 15 symptoms from col C and 9 symptoms from col D. And those cols include peripheral neurology, central neurology, mood and personality and hallucinations, sensory alteration, GI, epithelial tissues, fatgue-metabolic, muscle pains, immune system and so on. Mb12, adb12 and methylafolate each alone can cause sets of at least three systems that appear unrelated. A person with all 5 deficiencies, adb12-CNS, mb12-CNS, mb12-body, adb12-body and methylfoalte, can have hundreds of symptoms AFFECTING EVERYTHING. I got called names for that including liar, "too many symptoms to be believable" and so on.
     
  14. Pea

    Pea Senior Member

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    Yes, I know what you're saying! He has many many many symptoms on the list, including mood - things he wouldn't notice [but I did], and yes they do appear unrelated until I saw the B12 threads, and it all clicked.

    Now I understand what you meant in the other thread is that number of symptoms in each category may point to which specific B12(s) deficiency a person has.

    Yes, the symptoms for Prilosec side effects are the similar to symptoms for B12 deficiency, surprise surprise.
     

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