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Helpful Threads & Links for PANDAS

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  • 1 year later...

The "Cunningham Test" (aka "the test for PANDAS") is now commericially available in most states.


Here is a link to the company's website: http://www.moleculera.com/


Here is a link to one of the first (and longest!) discussions on this test: http://www.latitudes.org/forums/index.php?showtopic=4834


The test is also discussed under FAQ's: http://www.latitudes.org/forums/index.php?showtopic=6266 , scroll down to "Tests: Antineuronal Antibodies Tests"


Post #1 in this thread ("Back from Oklahoma and Visiting Dr. Cunningham") also some good questions and answers http://www.latitudes.org/forums/index.php?showtopic=9361&page=1

Edited by EAMom
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  • 2 months later...

Using 23andMe data to get guidance on your child's methylation issues.


This info may change as new apps or knowledge evolves but at the moment, this is what I'd suggest if you're just getting started with methylation... Hopefully others will share additional sites and articles and then we can pin this to the top of the forum.


For background info, I've found the following articles helpful:

http://autismnti.com...o_Education.pdf - a good "methylation for dummies" resource

http://forums.phoeni...arts-1-7.11488/ - the writings of Rich Van Konynenburg, who died in 2012 but did a lot of research to help the Chronic Fatigue community by taking Yasko's ideas and applying them to those with CFS who needed a practical approach and may not have a local doctor's support


Once you get your 23andMe data, do the following:

1. Log into 23andMe and go to the tab that allows you to download raw data. Download onto your hard drive. (this will be a zipped file)

(suggestion - also copy this zipped file onto a flash drive and store it in a safe deposit box or in a second location so you'll always have access to it - helpful as knowledge evolves and a decade from now, you want to explore the data in a new way. But realize it contains highly personal info and guard it appropriately).


2. Go to http://geneticgenie.org/ and follow the instructions for running your data thru the app. Currently, the app is free but I support the author's request for a $10 donation. The labor she's saving you is immense and I personally think she deserves the modest compensation. There are two profiles you can run - the methylation profile and the detox profile. I'd run both but I personally use the methylation profile more often.


3. Print the reports. Before you leave the screen that shows your results, hit "ctrl + print screen" or "ctrl + a" then "ctrl +c" to capture the data. Then go into a new Word document and hit ""ctrl + v" to copy this data into a Word document you can save. That way, if you lose the paper report, you have it electronically.


3.b. There are other apps that provide similar info plus additional analysis. One is found on http://www.mthfr.net and another can be found on www.mthfrsupport.com, which has developed an app called Livewello that has additional capabilities. Always make sure you understand how your data is handled and what you're agreeing to when you use an app like these. I've only used apps that say they delete your data immediately after running your report. No way to verify this of course, but do use these apps with an understanding of the privacy issues.


4. To interpret your report, I'd use this doument - http://www.heartfixe...trigenomics.htm It's a bit old - written in 2008. So the understanding of these genes may have evolved. But it's the best layman's practical guide I've found so far. It's worth reading all the way through and then, for simplicity, I've taken the document and copied it into Word. Then I deleted those sections that didn't apply to my results. I also deleted the extra things like recipes. I was left with a report that only addressed the genes where I had issues. Then I re-read this shortened document and highlighted specific author recommendations, such as "those with this gene mutatin should avoid x, y, z and supplement with a. b. c." This gave me a customized roadmap.


Applying the information in this heartfixer document can take some time and require some trial and error - and additional research. It takes awhile to look at the big picture of your unique gene combos to determine if you need a lot of methyl donors or only a few. Many of these methylation genes effect one another and either magnify or counteract each other's effects. You also need to research the supplements that are suggested. For example, Yasko and Roberts (the author) both suggest Yucca for those with a CBS mutation. yet Yucca is estrogenic, meaning it acts like an estrogen supplement. So I'd be personally uncomfortable using this supplement, especially without a doctor's guidance. While I resepct the knowledge of these experts and am forever grateful for their ideas, you still need to do your own research and understand the full range of effects any supplement can have. At the present time, Yasko is revising her views on the CBS gene and backing away from the role it may play in ammonia. So always check that the things suggested here are still the current thinking on the subject. It's a rapidly evolving field.


5. You now have an outline of what things to supplement and what to avoid. It's currently suggested that you start by addressing CBS and SUOX mutations, as these effect detox and you don't want to re-start sluggish cycles upstream without having a clear detox pathway. A good overview of the steps to take, in what order and why, is in Yasko's book http://www.dramyyask...pdf_02_file.pdf I've used this as an outline but confess that I had to read it in small doses. Aside from addressing CBS first, my personal experience is that it's been best to address the remaining mutations as a group, rather than supplementing for one mutation at a time. For example, rather than supplementing only for MTHFR and then moving on to MAO-A, I added small doses of various supplements for each, to try to find balance.


Always, always start at ridiculously small doses and always introduce only one supplement and wait a few weeks before adding in another. Otherwise, you'll have no idea what's causing a negative response and you'll need to start from scratch. To put things in perspective in terms of dosing, you may read that an adult typically uses 800mcg of methylfolate if they have MTHFT issues. But I know one child who does best on 67mcg every other day and one who needs 10mg every day. It can be very trial and error in terms of dosing. As a very general rule of thumb, I've been able to tell if something's having an effect within a few days to a few weeks. When I've crossed the line and dosed too high, I've seen an increase in the same symptoms I was trying to eliminate and I've stopped or lowered the dose for a few days/a week and then seen things calm down again. It's great if you can work with a doctor when developing your regime but make sure that doctor is well versed. I've seen some doctors mean well but give some really uninformed advice. There's a list of practitioners who do consults on www.mthfrsupport.com and some of these practioners participate on the mthfrsupport facebook page. But do realize they are not all MDs. Some have other degrees that allow them to call themelves doctors, such as a chiropractor. But verify their credentials and make sure you're comfortable with their training.


Here are some other good sites I refer to often:

http://mthfr.net/ - on this site is a good article explaining the different forms of folate http://mthfr.net/l-m...thf/2012/04/05/ and suggestions on what to do if you "overdose" on methylfolate while trying to dial in on what's right for you http://mthfr.net/ove...udy/2012/06/27/


A good comparison of 23andMe vs. the testing Yasko does http://www.mthfrsupp...nel-or-23andme/


A good article on why MTHFR isn't the end of the story http://www.mthfrsupp...of-methylation/


the impact of mold on methylation http://www.mthfrsupp...xins-and-mthfr/


MTHFR and thyroid http://mthfr.net/mth...ers/2013/07/18/


Source to create a custom vitamin/supplement: http://www.vitaganic.com/

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