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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23andme results and questions

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by upwards, Sep 9, 2014.

  1. upwards

    upwards

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    I have had Candida issues for about 13 years. I have been dealing with heavy metal overload, Lyme, Bartonella, and depression for about 8 years. My main symptoms have been hand/wrist pain (esp. tendonitis), arm, shoulder, neck, and low back pain. My pain was much better for a few years while I was exercising, but stopped about 2 years ago (or was it one year?) for various reasons.


    I also have had anxiety and phobias all my life. No panic attacks. Some memory issues (word search) at times over the last couple of years.


    I have been on a Paleo diet for the last 18 mos. or so. It helps with my Candida. Also, I was muscle tested and found to be allergic to dairy, gluten, soy, and corn. Two other muscle testers have disagreed with this, but so far I have scrupulously avoided these foods. The one time I made an exception to the diet was when I had some dairy one day earlier this summer, and I had deep shifting muscle pain, plus knee pain, for several weeks after that. I also had increased depression on wheat a few years ago. So I suppose there is some truth to the original muscle testing.


    My doctor ran a Methylation Profile on me thru Doctor's Data about 18 months ago. The only abnormal result was SAMe, which was low. My doc wanted me to supplement SAMe but I had tried both SAMe and another supplement for depression some years ago and felt very rageful on one of them, but can't remember which one! So I am hesitant to try the SAMe again, in case it was the one that caused the rage. Also, I am reading that some docs don't recommend SAMe as a supplement, they recommend fixing methylation.


    I got my 23andme done earlier this year, but don't really understand a lot of it. Here are my results, a la Genetic Genie:


    +/+ = COMT V158M, H62H, VDR taq, MAO A R297R, MTHFR A1298C

    +/- = COMT P199P, MTR A2756G, MTRR K350A, AHCY 01,19, CBS C699T, A360A


    My ND looked at these results and had me start on hydB12 (Perque), and I have been taking 1/4 tab (500 mg) daily since mid May. I was already having some degree of fatigue at that time, and the Perque did not change anything there. She also wanted me on Molybdenum, which I have tried off and on in small amounts but it seems to make me tired sometimes or to cause some chest pressure.


    I also started 1 capsule per day of B-Minus (10 mg thiamin, 20 mg R5P, 180 mg Niacin, 20 mg P5P, 150 mg Pantothenic acid, plus Biotin (I take tons of biotin due to recent hair loss)). Maybe I should cut this back to 1/2 capsule once or twice daily?


    I was supposed to also add BH2, SAMe, creatine powder, and MTHF. Then I am supposed to add mB12. Due to various other health issues that came up this summer, and my usual general state of overwhelm, I haven't added any of these.


    In the last 3 weeks, my energy has really gone down. I feel fine for a while, then I am fatigued for some hours. I drove 90 mins and was exhausted -- this is not usual for me. I have been having insomnia all summer to some degree but it is worse now. I do take naps, long ones if needed.


    At the start of the summer, my doc noted that my liver enzymes are up slightly. I feel like I am not detoxing enough but right now I just can't get myself to sauna or take baths. I am not helping myself very well!!


    I have had a bunch of other health issues come up this summer, especially elevated submandibular lymph nodes, hair loss (over 50% of my hair), moderate to high scalp tenderness, scalp seborrhea/itching (I believe this is unrelated to the hair loss because the seborrhea is localized). My doc did some testing and put me on an adrenal glandular supplement, thyroid glandular supplement, and Progesterone. The latter seems to be helping with the hair loss.


    I am planning on getting my amalgams out soon, though now I am worried about how well I will do with detoxing the sedatives (I am a very nervous patient). I do feel the dentist is taking all the precautions to keep my Mercury load down. Once the amalgams are out, I am supposed to start chelation. My Lead is especially high.


    A few days ago I quit the B12, and, though this seemed to increase my energy temporarily, yesterday I was wiped out again. I thought maybe my fatigue might have been caused by being on the wrong B12. Also, I received no instructions on increasing my potassium intake when I started the B12.


    I am realizing I need to take MTHF with the B12 (though seem to not feel well on the MTHF), also maybe need to add some K+, though not sure how much, and am wondering about other cofactors. Should I switch to a different B12? Do I need to tough it out with the Molybdedenum and MTHF even though it makes me tired?
     
  2. upwards

    upwards

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  3. Critterina

    Critterina Senior Member

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    @upwards ,

    Hi there! :hug:

    I have to be honest: I read your post yesterday and thought "wow, I think this is beyond me" and silently wished you the best - good health and good advice from someone who knows more than me. So, for what it's worth, I'll say what I feel I can say, but know that I'm out of my depth here.

    Are you taking the wrong B12? Hard to say. Given your +/+ SNPs, I think the hydroxy was a good place to start. If you want to try the methyl form, Enzymatic Therapies brand seems reliable. (Have some niacinamide on hand in case you overreact to it, though) Another issue is: are you taking the right amount of the Perque? You wrote 500 mg, but I think you may have meant 500 mcg (1/4 of a 2 mg/2000 mcg tablet?). How much did your doctor say to take? Personally, I take 15 mg. And is it sublingual? It may lose effectiveness if you swallow it.

    Although you have the MTRR A66G +/- that creates your need for B12, you also have the MTHFR A1298C +/+ that means you should also need methylfolate. I would think it would help with anxiety and
    But you said it made you feel bad? Try taking just a tiny bit (not enough to make you feel bad) and work up. Also, I am trying to figure out if Piping Rock brand is as good as Solgar (they say they have the same amount of the same ingredient, but I'm not sure I react the same), so I suggest you stick with Solgar brand at least until you know how it affects you.

    Why would they have you add BH2? That sounds wrong. Because of your MTHFR A1298C, you have trouble turning the BH2 to BH4, the active form. But maybe they are adding reageants (both MTHF and BH4) to make the reaction go. That might be what they are doing. OK, I'm OK with it. And it will make the BH4 more slowly because of the A1298C being inefficient - very clever of them! OK. So, these are two things you probably want to do together, BH2 and MTHF. I've never heard of that approach, but for someone with MAO A and COMT, it sounds very clever. Many people try taking BH4 (active form) and are pretty overwhelmed with it.

    Fatigue - that could be from so many things, and while people often use D-ribose, with Candida, you might not want to. (I learned on here that some gut bugs can methylate ribose to make glucose, to feed the Candida.) Creatine can be good for muscle endurance, but I'm not sure it helps general fatigue. Worth a try, though, and very unlikely to have bad side effects. Some people also like Co-Q10 and L-carnitine fumarate (or acetyl-L-carnitine/ALCAR) for energy.

    And adenosylB12 - we can't discount that you may need that for energy in the mitochondria. Although just needing B12 doesn't necessarily mean you need the AdB12, it's a possibility.

    Muscle testing never did anything for me. No one has used it successfully on me, but if it points you in the right direction, go for it.

    Hair loss can also have a lot of causes, including thyroid and adrenal/sex hormones and stress. Glad you find something is working. Did you have your thyroid and sex hormones checked? For me, DHEA orally works to some extent (I'm post-menopausal, it doesn't work if you aren't).

    Some people never need to add potassium when the start MTHF. Instead of tablets, I like coconut water. It has carbs, though, so you'd have to weight the advantages/disadvantages. It packs about 6 tablets worth of potassium into a single-serving container. When you feel bad, you might see if it makes you feel better.

    I'm wondering if you are getting enough P5P. Don't go over a total of 100 mg, but you might try adding 50 mg to the 20 you're already taking. It really helps in glutathione production/detox.

    Also, have you had your vitamin D levels checked? You might be low in that, and with the VDR Taq, it may be that your need a higher (within the normal range) level than you have.

    Well, sorry I don't really have much to say, in spite of lots of words. I hope some of the other people chime in with other ideas.

    Critterina
     
  4. Sherpa

    Sherpa Ex-workaholic adrenaline junkie

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    USA
    I don't know a thing about genetic test results and don't have much advice.

    I also have had great success lowering Candia with a primal (paleo) diet and I also avoid gluten, dairy (except grass fed butter), soy and corn. I feel much better.

    I have lowered scalp itching by giving up shampoo. 90% of the time i just wash with water. Im just sensitive and it feels Much healthier for my scalp. The only shampoo I use , very occasionally, is Regenepure. Its an anti hair loss (balding) blend and it seems to work somewhat... good quality.

    Best wishes on progress toward your health!
     
  5. caledonia

    caledonia

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    Hi @upwards, you do have a lot to untangle.

    The first place to start is with the gut. You haven't mentioned taking anything to kill the candida, only diet. You can't get rid of candida via diet. While a diet can be a helper, it won't kill candida.

    You need to directly address the candida. I was rotating between caprylic acid (Caprylistat), grapefruit seed extract, and cat's claw for many years to keep my candida at bay (along with a similar diet to yours).

    If you've done a stool test, it will tell you which supps will be effective against your candida or whatever other bad gut bugs might show up.

    Killing the candida will start to release metals, as the bad gut bugs will hold onto them. Just doing this step should help you start to feel better.

    So #1, I suggest doing the 4R Gut Rebuilding Program linked in my signature links. You're only doing it partway; you need to do the whole thing to get your gut to heal.

    That being said, I didn't get total gut healing until I did all the 4R steps, then started methylation. At that point, I was able to drop the candida killing supps, and haven't had any reappearance of candida. I believe this is due to an improvement in my adrenals helping my gut.

    When you take methylation supps, that will also cause metals to detox. You may have to keep it very low and slow - as the metals come out, it will make you feel worse. Being more tired is one of the symptoms.

    As far as the amalgams. They do need to come out at some point. If you wanted to try it now, I would suggest only doing one amalgam and see how it goes.

    You need to find out which sedatives the dentist will be using. Nitrous oxide (laughing gas) is contraindicated for people with MTHFR mutations. It will use up all your methyl groups and make you feel very bad.

    It might be better to get a prescription for some clonazepam (Klonopin) and just take one or a half of one before your appointment.

    Depending on how chemically sensitive you are, you might be better off waiting on getting the amalgams out when you have your detox system running better. This will happen once you start taking methyl supplements and have raised your glutathione a bit.

    I don't suggest doing sauna, chelation, etc. at this time.

    =-==-=-=
    So in summary:
    #1 do the 4R Gut Rebuilding Program, once that's completed as far as you can take it, start methylation treatment
    #2 read the SNPs Interpretation Guide, Start Low and Go Slow, and Roadblocks to Successful Methylation, all in my signature links below for more info on how to manage that.

    This is all going to take awhile - but as Amy Yasko is fond of saying, it's a marathon, not a sprint. You will get there eventually if you just get started, and then keep going.

    ps. I think I also have a bit of info in there for Lyme. Lyme causes an increase in ammonia, which is in the CBS pathway. You also have a couple of CBS SNPs, so it might be good to do see if CBS is expressed, then if so, do CBS treatment prior to getting into MTHFR and MTR (folate and B12).

    The ammonia is what causes a lot of the trouble from Lyme, so getting the ammonia out should also help you feel better.
     
    Sherpa likes this.
  6. upwards

    upwards

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    Thanks, Critterina, Sherpa, and Caledonia for your helpful ideas!

    The last few days have been kind of intense. I saw my doc right after I wrote that post. My K+ is fine, but my liver enzymes have gone up. My SGPT was just barely elevated in early May and late June, but now it is 137 (normal range 6-29), and my SGOT is also elevated at 118 (normal range 10-35). She is also concerned about my lymph nodes -- she believes the liver and lymph nodes are reacting to a chronic viral illness (not sure which one).

    I went to a new ENT doc today about my many enlarged lymph nodes. He sent me for a CT scan today, STAT. The first ENT I saw wasn't very concerned, then I had to wait many weeks for my appt with the second one. He also wants to do a nasopharyngeal scoping next week. The concern is lymphosarcoma, though he did say that it could be the Lyme or some other infection.

    I will try to reply individually to you but am a bit overwhelmed right now. Going in for first of many iv Vitamin C treatments with my Lyme doc tomorrow, to try to kill this theoretical virus. There goes 4 hours!
     
  7. upwards

    upwards

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    Critterina:

    Sorry, I can't figure out how to reply to a post and have the part I'm replying to be in the orange box.

    Yes, I am taking 500 mcg of the Perque (probly had the wrong glasses on!). I take it between the cheek and gum, but haven't been rotating locations. And last week I had a big sore where I usually put it! Anyone else have this issue?

    I don't know about the BH2 reasoning, maybe you are right. Sounds like I need to look into it more.

    I did have all my thyroid and sex hormones and adrenal hormones checked. All were low and all are being supplemented now. Have not started the DHEA yet, but I'm supposed to.

    The coconut water, while I love it, gets my Candida going. Darn!

    Yes, we are supplementing my Vit D and watching levels.

    Thanks for your ideas!
     
  8. upwards

    upwards

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    Caledonia:

    I have been on a variety of things to kill the Candida, just forgot to mention. Have done the stool tests recently but waiting for results.

    I have read several places that some folks really couldn't kill off their Candida until they removed their amalgams and chelated the metals. That is where my doc wants to start. Everyone has a different order in which to do things...sometimes it is frustrating!

    I like how you have the gut rebuilding program spelled out. I don't think the stool test I am awaiting is one of the two you mention, but it is a start, and I will look into those two further. I am also thinking of starting the GAPS diet.

    Why do you recommend no sauna at this time? Does it stir up the metals too much without putting enough of them into the sweat??

    Thanks for all you do!
     

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