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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Deplin so confused

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by anxiousguy, Jan 5, 2014.

  1. anxiousguy

    anxiousguy

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    I have dealt with OCD, anxiety and depression my whole life and tried many different antidepressants. A year ago I got off the meds because I was experiencing extreme fatigue to the point that I was falling asleep at stoplights. They also didn’t seem to be working well and I had tried many different meds prescribed by many different doctors over many different years. I have also tried therapy for the last ten years and tried different therapists



    Once I decided to get off the meds, I proceeded to see a ton of drs all year long and had lots of expensive/extensive bloodwork done. They all had different ideas (most contradicting each other). I can send the 30 plus pages of bloodwork to anyone who wants to take a look. I had low T (total – not free, low vit C, low LDH and aluminum as well as past epsteing barr.



    At this point I am not feeling too bad other than awful anxiety and depression. I saw a psychiatrist last month who recommended Pristiq and Deplin. I wanted to wait on the Pristiq but have started the Deplin. I didn’t want to start down the med route again. I may have to, but I am scared to and don’t want to end up in the fatigue boat as well as all of the side effects that made me get off them in the first place. In researching the deplin, someone had mentioned the a1298c. That sounded familiar so I looked at my bloodwork and googled. I am positive for 2 copies of the a1298c mutation. I am homozygous for a1298c mutation and negative (normal) for the c677T mutation in the mthfr gene.



    I just want to make sure that I am not doing anything detrimental and that I am doing the best that I can do. The Deplin is 15mg. I have been taking it for 2 weeks and don’t feel any different. Is this normal?



    I am making healthy choices to try and fight this as well as therapy which never works for me. The only thing that I am taking is Vitamin D, Cod liver, spirulina and the Deplin. I am occaissonally taking Ativan when I need it.

    Is it ok that I am taking that Deplin? Will it help me? Should I be taking or NOT taking anything else? Should I get periodic bloodwork to check my liver or anything else? Should I be conscious with anything else because of this mutation? Is there anything else that I should be doing/taking or not taking/avoiding? Is my anxiety related to this at all? Is it ok to take deplin? Can I drink moderately (couple of glasses of wine a week?)

    My main concerns are that I am doing everything I can do and not doing anything that will cause me harm. I also need to take a break from all this testing/supplementing/focusing on my health. It has been a draining year and I need a bit of a break (mentally and financially) I can’t heal my gut, get off gluten, do chelation and such all at once. I have to break it down into small manageable pieces.

    One of the things that overwhelms me is that you need to take supplement x. When you do that you need to take these to balance that. You then need to do this and that and check this and that. I want to get off that boat for a while and focus on healthy eating/meditation/cardio/therapy.

    I do have methylcobalamin injections that a doctor gave me. Should I be taking that? How much/how often? I am always confused by B vitamins in general. Can you take too much? Are they all water soluble and you just pee out any excess? Should I be taking Niacin?

    Thank you in advance for any help that you can offer me. I apologize for the long msage. Please let me know if you have any questions or need to know any of my levels.
     
  2. caledonia

    caledonia

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    Hi anxiousguy. I'm glad you're successfully off all those meds. It can be extremely difficult for some people to get off without horrible withdrawal syndromes. So I would say that's a good sign. I think your intuition to avoid Pristiq is a good one and you should pay attention that.

    Deplin is methylfolate - that's good. However, it's a huge amount of methylfolate. In most cases, that's bad, as it will cause methyl trapping and depletion of B12. You need both methylfolate and B12 to make methyl groups, to make neurotransmitters, to not have mental illness symptoms. So the fact that you're getting no response to Deplin makes me think this is what could be happening.

    There are a few people who need larger amounts of folate to get a response. I haven't quite figured out why. It could be gut absorption issues, FOLR (folate receptor) mutations, etc. But for most people you would want to take say 200-800mcg max. Then take a somewhat larger about of B12, 1000-2000mcg. If you take too much B12 you can get a trapping situation in the opposite direction. So what you're looking for is a balance, not obliteration.

    If you have metals to detox, you may want to start off much much lower. As the metals come out it will make you feel worse. So you want to keep it at a level you can tolerate.

    The form of B12 is also very important. Injections or sublingual routes are good, as B12 doesn't absorb well by the oral route in the stomach. Methylcobalamin could either be good or bad depending on if you have COMT mutations which will make you sensitive to too much methylcobalamin.

    This is a great article: http://metabolichealing.com/michael-s-blog/mental-illness-or-methylation-mutation/

    Check out the links in my signature, especially Start Low and Go Slow.

    A 23andme test is inexpensive and easy to do, and after being run through geneticgenie would give info on the rest of your methylation cycle mutations, and what forms of B12 might work best for you. If you post your SNPs here, we can help with interpretation.
     
    helen1 likes this.
  3. anxiousguy

    anxiousguy

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    Caledonia,
    Thank you for the reply.It WAS difficult getting off the meds, but I knew something was wrong when I was on 5 different meds (A pill to help with depression. Tired? This will wake you up. Can’t sleep. This’ll help)
    I have been on the Deplin for 2 weeks. I don’t know if I have gotten NO response. Hard to guage. I am trying to get help from physicians, but I want to educate myself too (don’t get me started on the average doctor). I know you are not my doctor etc – all the usual disclaimers, but is it ok to take the Deplin as long as I take B12? What type b12/how much/how often? Can I take too much b12? I already own 3 months of deplin so….
    As far as the metals, aluminum is 58 ppb , Arsenic 7.0 ppb, Cadium .42 ppb and Mercury <0.78 ppb in testing in the Spring and Fall testing revealed <3 mcg/L arsenic, Mercury <4mcg/dL, Lead <2 mcg/dL, Aluminum 5 mcg/L. My selenium was 173 mcg/L but I was supplementing with that before.
    Can I e-mail you or PM you all my results?
    I don’t understand. How do I get a 23andme test? Is it possible that in all of my testing that that has been tested? What is SNP?

    I just wanted to reiterate, I am trying to just “coast” a little bit at the moment because of all of the time/expense that all of this has taken. I am exhausted and want things as simple as possible – not because of laziness – but weariness of doing this daily for a year (in addition to moving, family deaths, etc)
    Thank you again
     
  4. caledonia

    caledonia

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    You'll want to take somewhat more B12 than methylfolate, like a 5 to 3 or 5 to 1 ratio. See if you can cut your Deplin into something like 1/8 or 1/16 or crush it into powder and just take a smidge. It should last forever this way. I know that stuff is expensive.

    How much methylcobalamin is in your shot? If your shot is 1000 or 2000mcg, that might be ok.

    I know you said you're overloaded. So 23andme is the only thing I would suggest as simple thing to do, which you probably haven't already done yet. Watch the Methylation Made Easy videos, #3 Treatment and #4 on the SNPs for more info. SNP is another word for genetic mutation. Pronounced "snip". MTHFR is a SNP.

    I don't think there is any upper limit on B12. The only problem is if it starts to release metals. You may have worse mental problems, or flu-like aches. There can be various symptoms which could be quite severe. The other problem is if you have COMT mutations. It can cause mood swings, which again could be quite severe.

    You should have some nicotinic acid on hand before starting, just in case. This will make you feel a lot better right away. The exact method is in my Start Low and Go Slow doc in my signature.

    One more thought. Methylation can be pretty tricky and complicated. You might be able to simply take some folate and B12 and be fine, and you might not. If you're not feeling up to it right now, maybe it would be better to take a break for a few months until you feel ready.

    Not to keep harping on 23andme, but it would take 6 weeks to get the results back, so maybe do that test at your leisure, then wait until you get the results back to start in earnest. That would be a couple of months.
     
    helen1 likes this.
  5. anxiousguy

    anxiousguy

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    I don’t care about the expense of the Deplin, so I am not in a hurry to crush it up. Is there a detriment/benefit to taking more or less. If I stayed at the 15mg Deplin I don’t know how to make that conversion to the amount of b12. How much? Would I be better off with a sublingual? Do you have a recommendation?
    The amount of b12 methylcobalamin in the shot they told me to take was 1ml. I saw them before I knew about Deplin. My b12 was 583 at that time and they wanted it higher. The person that asked me to do that was a functional medical doctor. Months later a psychiatrist gave me the Deplin and said that there were no side effects/detriments/anything else I needed to worry about.
    Thanks for understanding how overwhelming this all can be. Even the videos are confusing to me. I wish that I had a doctor that understood this stuff. I keep hearing so many different things and people look at me like I am crazy. Quite frankly worrying about all of this stuff is a big part of what makes me crazy. It triggers my anxiety and OCD like crazy!!!
    If I am not prepared to do all this extra stuff. What does the 23andme entail? All of this health stuff spins off into another test to take and another thing you have to take and then ten other tests and ten other things. Where does it all end?
    Is there a happy medium that I can strike with B12 and Deplin that wouldn’t release metals or cause the worse mental problems or flu like aches. How would I know if I had COMT?
    I didn’t understand the nicotinic acid suggestion. Is that just to have on hand in case I start experiencing bad symptoms?
    I understand that Methylation can be pretty tricky and complicated. In the meantime, can I just keep taking the Deplin if I haven’t experienced any bad symptoms in the two weeks since I have been on the 15mg? Should I DEFINITELY take b12 whenever taking the Deplin? Are there any potential problem with all of this other than it just not working? Do the problems or benefits usually rear their head off the bat?
    I run a seasonal business and April through October is impossible to do anything, so I’d like to try some of this now if possible rather than wait till the fall.
    Sorry for the long response and repetition. I have very little faith in doctors and their base of knowledge outside of giving you pills and knowing the “bare minimum”.
    Is there any problem with stopping Deplin cold turkey?
    Again, do you want to see my bloodwork? Is that relevant? Do I need to keep getting tested with all of this?

    After all of my research, what are the main concerns with this mutation? Would I be able to take the rest of the year off and not worry about anymore of this for a while (and take or not take the Deplin)
    Again, Sorry for the long posts and tons of questions and thanks a bunch in advance.
     
  6. Hip

    Hip Senior Member

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  7. Soundthealarm21

    Soundthealarm21 Senior Member

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    Here is what helped me DRASTICALLY with anxiety. I had horrible anxiety, panic attacks (holy shit don't get me started on those), and depression:

    Inositol http://www.ncbi.nlm.nih.gov/pubmed/7793450
    GABA
    L- Theanine

    and then a huge diet change (Paleo, High Fat, High Protein, Low Carb).
     
  8. caledonia

    caledonia

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    Boy, you do sound anxious. I recognize the OCD pattern of all the repetitive questions. I've had anxiety and my dad had that plus OCD too. I will try to explain some more.

    Ok, the reason to crush up Deplin is the dose is way too high. If you don't care about the expense of not using it up and don't want to deal with splitting pills, then buy some other methylfolate in much smaller doses.

    .

    The methylcobalamin appears to come in 1000mcg per ml doses. So I think that's safe to assume that's 1000mcg. A B12 of 583 is a bit suboptimal. So I think your functional doc is right on.

    This doctor is flat out wrong, and has no understanding of methylation. He's just prescribing a pill.

    It's ok if the videos are confusing and you have to watch them several times to understand. I've done the same. I think my record is 6 times for one of the Ben Lynch videos.

    I've had the same problem with docs and methylation. Docs that understand this stuff are pretty rare right now, that's why we're on this forum trying to learn it ourselves. You could try going to MTHFRsupport.com and finding a doctor from their list. Several of them do phone consultations, but then you're probably back to more complications.

    23andme is $99. You spit into a tube, then mail it back. In six weeks they email you a link to your results. You take the raw data and run it through geneticgenie to pull out the methylation genes. This will tell us certain thing about your methylation cycle that can help with treatment.

    I think there is a happy medium you can strike, but I wouldn't use Deplin at all. COMT is one of the genes on the 23andme test, which is in the methylation cycle.

    In fact, here is what I suggest. I forgot to mention it earlier. I'm experimenting with this myself, but I don't know anyone else who's trying it - probably because I invented it and haven't really told anybody yet - lol. This is a simplified protocol that should work for all SNP types.

    Amy Yasko, who is the one who came up with all this methylation stuff, has a new multi vitamin called the All In One. http://www.holisticheal.com/all-in-one-multi-vitamin-mineral-120-capsules.html
    This vitamin includes methylfolate and a bunch of co-factors. It's designed to work for all SNPs types. There is some B12 in the vitamin, but since it's oral, it barely absorbs, so you need to add some sublingual or injection B12. Also from holisticheal.com I would buy some liquid hydroxycobalamin. The hydroxy is safe for COMT mutations, and should work for other mutations too.

    So try like 1 All in One multi with one drop of hydroxycobalamin and see what that does. If you don't tolerate the hydroxy, you can always do the methylcobalamin. You could try this without doing any gene testing, and just sort of work it out by trial and error. One other thing, I think I would also add a combined magnesium/potassium supp. Magnesium is required for SAMe production to create methyl groups, and potassium is required for cell rebuilding once methylation is restarted.

    Yes. Nicotinic acid will soak up methyl groups, and so stop a reaction caused by overmethylation, or too many methyl groups. It's very easy to get into an overmethylation situation, even if you're being careful. I've probably done it a half dozen times myself, and I'm the queen of subdividing pills into teeny tiny doses - lol. The nicotinic is a lifesaver.

    No, I wouldn't take Deplin at all at this time. If it's causing methyl trapping, it will stop methylation (not good) and also deplete B12 (also not good). Your 1000mcg methylcobalamin won't be anywhere near enough to offset 15mg of methylfolate. I've heard of a few cases where Deplin was helpful for awhile then it "quit working". That's when it depleted the person's B12 stores. Not good.

    I've done this inadvertantly myself at a smaller level by taking a multivitamin which had methylfolate in it without taking sublingual B12 with it. This was something prescribed by my naturopath. I'm still trying to dig out from B12 deficiency.

    There is no way that I would take a huge amount of Deplin and then an even huger amount of B12 to match it. This would cause massive overmethylation and could be extremely dangerous.

    I don't think so.

    I'm not an expert my any means, but I would be willing to take a look at it, and see if there's anything that stands out. Some people like to keep track of things with testing, but others don't due to money issues. Some tests are better than others. Some are just a waste of money. So you have to do what works for you.

    The main thing with MTHFR A1298C is that your folate will be running a little slow, I think about 20% for one mutation? You likely have other mutations adding to the effect, and also the aluminum. Wow, I just looked at Heartfixer who says MTHFR A1298C plus CBS and BHMT will lead to a drain on BH4 and lowered neurotransmitter production. Aluminum will add to the problem. Boy, this really sounds like you!

    I'm not sure what that means? Just take a year off and don't worry about methylation until next year? Whatever works for you. If it was me, I would probably play around with it a little on the chance that it could be helpful, rather than suffering for another year. If it's not helpful without doing a bunch of testing or whatever, then at least you know what doesn't work and you can try again later when you feel ready.
     
    helen1 likes this.
  9. caledonia

    caledonia

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    You could also do what the others are saying about anti-anxiety supps. I did GABA and/or theanine for several years and it was helpful. This would be more of a bandaid, but could get you through until you feel ready for methylation, which would be a root cause.

    The reason this works is those of us with methylation problems are often high in glutamate (stimulating) and low in GABA (calming). So you would supplement with GABA or theanine. Then diet wise, don't eat any MSG, which basically means avoiding all processed food and then the big four natural glutamate foods - tomatoes, peas, Parmesan cheese and mushrooms.

    This is why a Paleo type diet mentioned above would work for anxiety.

    Hey, @anxiousguy if you have any more questions for me, can you tag me like this @caledonia, so I get an alert. Otherwise I might not see it. Thanks.
     
  10. knackers323

    knackers323 Senior Member

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    If money isn't an issue and you don't have the time or patience to study this why don't you go strait to the source and see Dr Yasko. They would take care of all the testing and a lot of guesswork and stress.
     
  11. Starfive

    Starfive

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    just a heads up about 23andme.com... the Feds have told them to stop the analysis I believe. For those tests in process they offer a refund. I don't know the latest so best to check out the site
    23andme.com
     
  12. FunkOdyssey

    FunkOdyssey Senior Member

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    You certainly should be confused about deplin. Fact is, there are differing schools of thought when it comes to methylation treatments, and there is no certain answer. Some doctors and gurus do advocate very large doses of methylfolate and see success with it. Listen to both sides and decide what makes the most sense to you.

    Or better yet, test both approaches and see what works for you as an individual. You might be very sensitive and require the careful, calculated Yasko / Rich Van K'esque approach. Or, you might have folate receptor blocking antibodies, genetic defects, etc that require a brute-force, high-dose solution.

    As others have mentioned, if things get out of hand, nicotinic acid works beautifully as a methylation-abort switch. Be sure to have 100mg capsules on hand during your experiments.
     
  13. anxiousguy

    anxiousguy

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    @caledonia Thanks again.

    A couple more things:

    I have been feeling better the last couple days and stopped the Deplin yesterday. I don't know if this is attributed to the Deplin or the fact that mentally I have decided to simplify/streamline my medical approach and all that that entails. If the Deplin was "working" will I notice it by not feeling as "happy" going forward. Should I still suspend taking it?

    23andme doesn't do that testing. I tried to upload my medical records but the file is too large. How can I get it to you? There are methylation cofactors and neurotransmitters and precursor results on there. The Dr who designed the test and did a phone consult had me taking folic acid. Dr Sherry Rogers - she is retired. She does consults and writes books now.

    I am confused by B vitamins in general. Are they all water soluble? Should I be taking a complex? Keep up on the B12 shots even if I am not taking Deplin now? How much? How often? How often should I retest. I know that you said 583 was suboptimal. What should I aim for?

    I was a little confused about the COMT mutation. I don't know what that is or if I have been tested for it.

    You also said "
    The main thing with MTHFR A1298C is that your folate will be running a little slow, I think about 20% for one mutation? You likely have other mutations adding to the effect, and also the aluminum. Wow, I just looked at Heartfixer who says MTHFR A1298C plus CBS and BHMT will lead to a drain on BH4 and lowered neurotransmitter production. Aluminum will add to the problem. Boy, this really sounds like you!

    Was my aluminum that high? I am glad I am on a non aluminum deodorant. I don't know where it could be coming from? Is that a high ammount of aluminum? What is CBS and BHMT? Why does that sound like me?

    @soundthealarm21
    I have radically altered my diet. I assume that low carbs means crappy carbs. I eat eggs and an apple for breakfast. Almonds for a snack and half chicken/half broccolli or veggies for lunch. Generally an ok dinner. I've cut out ALL fast food and 90% of processed food. I do occaissonally indulge in an omellete at the diner or chinese/something fun once or twice a week. I do drink a handful of decaf coffees a week in addition to a glass a wine on the weekend, but no more iced tea and mostly just drink water and chamomille tea.

    Should I just try taking some GABA? Is there any detriment?

    This is the only doctor on the mthfr support site near me is http://www.nycfuturedocs.com/nycfuturedocs/ContactUs/index.cfm
    I left a message for them.

    My homocysteine was 936 nmol/mL in the Spring and 13.5 Umol/L in the Fall. I notice that those units of measurement are different.

    Again, what does the a1298c mutation mean in general for my health. Is it just methylation or other things too? What problems can it potentially cause me?
    It did say on my test (which I don't understand) "hyperhomocysteinemia is a risk factor for arterial disease and venous thrombosis. Homocysteine levels are affected by nutritional and genetic factors. Since MTHFR is involved in Methylation of homocysteine to methionine, individuals with MTHFR gene mutations that reduce enzsyme activity may develop hyperhomocystemia and thus be at elevated risk for vasuclar disease.

    Sorry to write a book. Thank you soooooo much for your help. I am extremely grateful :)
     
  14. Soundthealarm21

    Soundthealarm21 Senior Member

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    I take GABA and have not had ill effects from it. My assumption would be that it's better to take straight GABA then to take drugs that increase it (benzodiazepines. But I do take one a day for sleep), but I haven't seen any studies on supplementing GABA.

    Maybe call your doctor and ask about it.
     
  15. Hip

    Hip Senior Member

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    GABA does not normally pass through the blood-brain barrier, so in most people GABA will have no effects in the brain at all. If GABA does have an anti-anxiety, calming effect, it is because you have a leaky blood-brain barrier. See here.
     
  16. Soundthealarm21

    Soundthealarm21 Senior Member

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    Well being that this disease is called Myalgic Encephalomyelitis, which translates out to brain inflammation, it would seem to me to make sense that GABA would be able to cross the BBB at this point.

    Something that confuses me is how it's called a neurotransmitter yet it doesn't normally cross the BBB. Could you explain this please @Hip ?
     
  17. caledonia

    caledonia

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    Even though Yasko is the source, and I think she is mostly right and everything, I wouldn't suggest that because she is very expensive and complicated. Even her "simplified roadmap", for my SNPs would be something like $900 a month and dozens of supplements. On the plus side, if you did do a straight Yasko approach, the autism moms at her forum could help you through it.

    I think a "Yasko lite" approach which is more cost effective and simpler is best. However, it may take a lot of study on your part, because this is such a new field and docs are hard to find. But the situation is getting better. Ben Lynch is having seminars a couple times a year and training docs. If remember correctly, I think he's going to start listing them on his website soon. There are several docs listed at MTHFRsupport.com who have been vetted in knowing the whole methylation cycle, not just MTHFR.
     
  18. caledonia

    caledonia

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    The FDA told them to stop their analysis. This has no effect on us. You can still get your gene information. For methylation treatment, you just take the SNP (gene) data and do your own analysis at geneticgenie or MTHFRsupport.
     
  19. SOC

    SOC

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    I hope you all will excuse me if I'm throwing a wrench in the discussion here --

    I don't see that @anxiousguy has given any indication that he has ME/CFS. We should probably be cautious about suggesting treatments for ME/CFS when his issues may be something entirely different. What applies to us may not apply to him.

    That said, a lot of the discussion in this thread is also related to OCD, anxiety, and depression and so is probably helpful. I'm just suggesting we make sure we're keeping our eyes and efforts on the right target. :)
     
  20. anxiousguy

    anxiousguy

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    Thanks @SOC

    I was told I had CFS - in addition to 5 million other things. My fatigue post meds has improved. I am much better and never nap anymore. I think getting off meds, getting my vit D from 11 to over 80 and overhauling my diet has done wonders.

    I am mainly interested in all of this from an anxiety/ocd/depression angle.

    Thanks

    @caledonia
     

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