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CFS, Lyme, Mold, and now SNPs...help

Discussion in 'Genetic Testing and SNPs' started by Meremom, Jun 26, 2013.

  1. Meremom

    Meremom

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    Lexington, Virginia
    Hi, Real quick history. Diagnosed with CFS in '93 (shingles in '85 at age 32, and felt horrible after that for years), Lyme in '08, ERMI test results of 19.87/20 with "bad" gene for mold detox in '12 (expensive home remediation), and now just got back my 23 and Me test results. I was homozygous for ACAT which I keep reading is a #1 priority and frequently a problem for patients with CFS. Wish I knew how to print out my Genetic Genie results (cut and paste?), but here are my "reds" (both methylation and detox): VDR Bsm, ACAT1-02, CYP1A2 164A>C, CYP2D6 100C>T. My "yellows" are: COMT V158M, COMT H62H, MAO A R297R, MTR A2756G, MTRR A66G, AHCY-01, AHCY-02, AHCY-19, CBS A360A, CYP2C19*17, CYP2D6 S486T, CYP3A4*18, SOD2 A16V.
    The more I read, the more confused I get. My doctor is just learning about this-she is a functional doc and great, but can only know so much. I am wondering if I should just try the ACAT supplement from Yasko. My lyme doctor has me on a good supplement/probiotic routine and my functional doc. is tweaking it a bit from stool test results, etc. I stopped my lyme treatment when I got tired of hearing (after 5 years and IV) that everything was a herx or biofilms. Now I am wondering how much was the sulfur drugs and lousy detox. I keep looking at the position of that ACAT gene at the start of the methylation pathway and just think it has had a major role to play in YEARS of disabling fatigue. Anyone have the time to give me their two cents--I would SO appreciate it!
     
    concepcion likes this.
  2. Valentijn

    Valentijn The Diabolic Logic

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    The red VDR Bsm is actually the good version, and there's no research showing that the ACAT1-02 is at all relevant to the functioning of the gene. The AHCY SNPs are also lacking any support showing that they effect the AHCY gene. Same for CBS A360A.

    I haven't looked at the COMTs, MAOA, or MTRR A66G yet. Or the detox SNPs.

    But basically your methylation reds are actually one green and one irrelevant. The MTR and MTRR might have a small impact on your methylB12 formation, so supplementing some of that might help a bit. Or not :p
     
  3. Meremom

    Meremom

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    Lexington, Virginia
    Thanks. I have been trying to google ACAT +mutation etc. to find out if the mutation actually impacted the chain of events after it (excuse my simplistic thinking). I have not been able to find anything, as you say, that shows it is "at all relevant to the functioning of the gene." It certainly appears to sit in an important "gateway", but there is so much contradictory info out there and I have tried not to throw too much money down holes that aren't confirmed. I did have a positive Igenex lyme test or I'm not sure I would have gone on with all the lyme treatment. Thanks for your take on my SNPs. Right now I am focusing on a healthy diet and lifestyle.
     
  4. sianrecovery

    sianrecovery Senior Member

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    Manchester UK
    My yasko results weren't that bad, so I put off a methylation protocol for years, but I wish I hadn't, because I feel so much better on Rich's protocol. Sure - you can have or not have dodgy genes, but I would bet you can also get functional issues with methylation due to infection etc. I also have the 'dreaded' multisuspectible geno on mold and lyme - maybe that's why it seems to be helping so much.
     
  5. Meremom

    Meremom

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    Lexington, Virginia
    Sianrecovery, Thanks for your input. I am so new to the methylation protocol choices, could you elaborate on "Rich's protocol?" You don't have to type out what you take, just a link to his philosophy and suggestions would be helpful. I keep seeing the recommendation for bile salts for ACAT and a variety of other supplements (some of which I am on), but it is hard to know what to try. I read everything on CFS for many years, then it was toxic fish poisoning (which I had as a Peace Corps Vol. and which took me to Ritchie Shoemaker's site many years before I knew about mold or lyme), and in recent years I've read everything about lyme (abx, herbs, etc.) I can barely wrap my mind around trying something new, but this looks promising with my genetic results and my results from a methylation pathway test 2 years ago (that my doctor and I ignored--why she ran the test, I don't know...) Thanks for your help--I am sure, if you have responded to my message, that you have been down all these roads, too. Bless you and I hope your health is improving.
     
  6. caledonia

    caledonia

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    Cincinnati, OH, USA
    The thing that people seem to miss is yeah, you may have the SNP, but is it expressed? Yasko has detailed descriptions of what constitutes expression, both by testing and symptoms. http://www.dramyyasko.com/resources/autism-pathways-to-recovery/chapter-6/

    My sister is ACAT +/-, and has several ACAT symptoms, including kidney stones. It seemed pretty obvious in her case, so she didn't do testing. She's taking the Yasko ACAT/BHMT supplement as she has both of those mutations, and it's a cost effective all in one formula.

    You don't have any BHMTs, so I'm not sure if that formula would be suitable for you. That would be something to research, because otherwise, that means 8 or 9 separate supplements to address ACAT. I suggest asking about it on Yasko's forum.

    There are many other things that can cause fatigue - just from your SNPs, the MTR/MTRR combo is a bad one (I have that one too). It will cause great depletion of B12. SOD can also cause fatigue (got that one too). There is a supplement for SOD some of us have been discussing on here. http://www.agrigenic.com/xee.htm There was one patient who had significant improvement from it (no longer bedridden). I'm eyeing that one if my other efforts don't help significantly.

    I got a great deal of useful info from doing the Nutreval test. You can see your Krebs cycle and where the blocks are and what to do about them. Lead and mercury and various vitamin deficiencies are big culprits. Also mito supps can help the Krebs cycle. I'm getting a nice boost off of l-carnitine fumarate.

    My signature has what I consider the best links for methylation info.
     
  7. Meremom

    Meremom

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    Lexington, Virginia
    Caledonia, Thanks for jumping in. I had the NutraEval test run two years ago and, at the time, my doc and I had no idea why most of my "Bs" were so low (I was supplementing). She gave a talk on 23 and Me and Methylation pathway this Spring and a little light bulb went off in my head that all of it sounded familiar. So I just got out my NutraEval test and have been looking at it along with my Genetic Genie results. Thanks for your great work on the Interpretation Guide and for the other links. Looks like I've got some studying to do, but so much easier with some direction!
     
  8. btdt

    btdt Senior Member

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    Ontario
    OUR TEST

    A word about what our genomics test is not. Our test differs from those that merely measure one’s genetic sequence, such as 23andme or methylation profiles. Instead, we are looking at dynamic gene changes, not just the stationary genetic structures of DNA. No one can look at genetics alone and tell if a single nucleotide polymorphism (SNP) is active or not. For example, I am often presented by patients who are concerned for their MTHFR, COMT or CBT status, and decry their impaired genetic ability to properly 3 ‘detoxify.’ I cannot think of a greater recent misunderstanding of basic molecular biology, or its clinical application than the current overemphasis on SNP measurements alone. Similarly, finding viral genes in our nuclear DNA sounds ominous, but it isn’t. All of us have DNA from thousands of viruses intercalated into our own genome. When we see positive antibody blood tests for viruses, like EBV, CMV, HHV-6 and more, do we know if the viral genes are active? NO! Gene activity (or suppression) is what we are looking for. And our test is not the technology that focuses on clustered regularly interspaced short palindromic repeats (CRISPR). We aren’t looking at gene editing (though the idea is fascinating) of one or two genes, we are trying to correct abnormal gene transcription of hundreds, indeed thousands, of genes. In fact, this is the great divide between genetics and genomics research – the difference
    http://www.survivingmold.com/news/2017/04/progene-dx-path-to-certainty-part-2/
    The new genomics test is available from www.survivingmold.com!

    I really have no business looking at more sites I do not understand... but I do it anyway. Seems I am at a brick wall in any real progress as I can't manage ...getting to the bottom of anything. I can't be my own doctor I am not well enough... so I may be on the list of those who fell thru the cracks and stayed a bottom dwelling crack person forever. Still I do look I can look and find things I just can't understand them or apply them with any degree of consistency... as I get sick. Forget... really forget why a bought a supplement when I am suppose to take or even where I learned about it... I can completely forget all sorts of things.

    I keep hoping on one of these sites I will find a doctor I can afford and trust to help me I can't find that.. but I look.

    This may or may not be something useful... in case it is ...if it is not in the right place please put it wherever you want if it is here already....woops.
     
  9. Valentijn

    Valentijn The Diabolic Logic

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    This is complete nonsense. SNPs do not get activated or deactivated. Genes can get regulated externally, but not individual SNPs. Shoemaker or whoever wrote that has absolutely no idea what he's talking about. This is marketing, not science.
     
  10. btdt

    btdt Senior Member

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    there is more
    http://www.survivingmold.com/news/category/diagnosis/

    and lab test and what they are for...
    http://www.survivingmold.com/diagnosis/lab-tests

    I can't decide what is the next book what is the next test what is the next source of hope... I have so many books so many protocols already none of them worked long term should I have been able to implement them... even short term.

    I have ended up with a hodge podge of things that don't hurt me too much... one step forward 3 back... it is quite a dance. Not a forward dance by any understanding but at least I am on my feet just now.

    Do you think these lab tests are a bunch of bunk too?

    I have to admit it sounds like it could be and I did have a flood in my house long ago..... who knows.

    What is a person to do with all this?

    Yes money is a motivator and there are countless places to waste it when it is more scarce and not replenished by sick people the choices are maybe life and death if not so dramatic still serious and I am not convinced they are not life and death. Yet that happens every day in medicine... choices are made.

    I have wasted a lot of time and health and money already I keep looking... so far looking is free but it also opens me up to hope... of finding something and keeps me vulnerable to shiters... maybe they don't even know they are shiters ... some of them.

    Countless books protocols diagnosis... surely there is something I keep thinking this but maybe there isn't... maybe there is no sense looking cause there is nothing to find...

    still it feeds my hope and that is worth something.

    I think I just took you on a trip thu my brain... and it is messing in here... you likely did not like it... I don't... sorry about that.
     
  11. btdt

    btdt Senior Member

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  12. btdt

    btdt Senior Member

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    he says genes not snippets
    " We aren’t looking at gene editing (though the idea is fascinating) of one or two genes, we are trying to correct abnormal gene transcription of hundreds, indeed thousands, of genes. In fact, this is the great divide between genetics and genomics research – the difference"

    maybe it is something new
     
  13. Valentijn

    Valentijn The Diabolic Logic

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    That's irrelevant to his nonsensical statements about active and inactive SNPs.
     
  14. btdt

    btdt Senior Member

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    ok Valentijn as usual most things you say are over my head I am not into looking up words today... if you look at it maybe you will find your right... likely still it sounds like me... so domany other things and I have the books and supplements to prove it.
     

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