Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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B-12 Pills, B-12 shots or Anti-Depressants?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by pumpkin, Sep 17, 2016.

  1. pumpkin

    pumpkin

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    Hi there guys,

    I was posting a lot about 6 weeks ago and got a lot of help from @Mary and @caledonia. After apparently going into overmethylation, I followed Caledonia's advice and stopped taking all the B vitamins, and took Nicotinic Acid a few times a few times a day, maybe for a week. That seemed to stop the crazy Potassium needs and cramps in my legs.

    Unfortunately, My heart rate never went back to normal, the tachyacardia, the chest pain, it became a massive source of stress for me. I had already had these symptoms - I originally started seeing a doctor nearly a year ago due to palpitations and a Holter exam about 9 months ago already found I had tachyacardia of up to 190, but in the weeks after starting the B vitamins, it just exacerbated so badly and after a few weeks was not back to normal. One day, suffering from chest pains, I just decided to go to the ER, despite awaiting a referral to a cardiologist from my GP. At the hospital they immediately rushed me through and put me on drugs to stabilise my heart rythm, saying I was tachyacardic and had an arrythmia. They later told me it was not dangerous and would refer me for an angiogram and put me on Beta-Blockers. Since taking the Beta blockers, my heart rythym has gone back to normal and I am immensely relieved.

    The only problem was that while I was there, they asked me why my platelets were so low - I've had well below the minimum for over a year, although my GP says it's fine. The doctor asked if I had joint pains, which, yes, became chronic and agonising since starting the B vitamins, although I had been suffering from it every 6-8 weeks for a couple of weeks for at least 6 months. I told the doctor I thought all of this, my platelets, my heart, was due to a B12 deficiency from being Vegan all my life. The doctor has referred me to an autoimmune diseases department, I don't know why.

    I went back to my GP and explained what had happened and asked if he could do a test to find out if I had some type of autoimmune disease because the pain was agonising and I was really stressed from now thinking I had Lupus or arthritis or something. The doctor was the cruellest doctor I have ever seen in my life. He just looked me in the eye and said 'no, there are no tests for you, because your problems are psychological, they are in your head, what you need is a psychiatrist and if you don't agree with me, change doctor'. His reaction came out of nowhere, I don't understand it and I was devastated.

    I went to an Osteopath twice this week, he has aligned my spine, done some massage etc, but says I have inflammation in my joints, shoulders, back, legs etc, and it's probably stress related.

    This week I went to a private Heamotologist, to ask his opinion about the platelets. He said the exact same thing as my GP. He said that a B12 level of 205 (non-deficiency range is considered 195-800, so I'm right on the border) is fine, the low platelets are fine, basically because I don't show anemia. He said he doesn't see anything physically wrong with me (despite the pain, and the arrythmia etc, but hey) but said I looked visibly stressed. And prescribed me anti-depressants, saying the relief from stress would alleviate all the other symptoms.

    I took the Escitolopram for the last 2 days. Yesterday I got dizzy and felt like a zombie and last night I woke up with a horrible pain inside me, you know like the pain when somebody breaks up with you or somebody you love dies, that kind of massive pain in your stomach, except nothing bad had happened so I know it's from the SSRI. I feel like it has made me more depressed. i know side effects are normal in the beginning, but I just don't feel good about taking this stuff.

    I was starting to feel better, happy, the past week. I am taking Inositol which i find really helpful, my vitamin D levels are fine, I had managed to stabilise my mood somewhat by regulating my blood sugar with Chromium, using chamomile tea and exercise to get a hang on the anxiety.... I was beginning to feel better and wanted to try 5-HTP and GABA to see if they help. I've also just started taking a mineral supplement, trace minerals, that gives 1.5 mg of Lithium every day along with 72 other minerals. I wanted to give all this stuff a try, not go on anti-depressants.

    I am absolutely convinced that so many of my symptoms are due to B12 deficiency. For the past week I have been dividing my Jarrow 5000MG methyl B-12 into maybe 8 or 16 pieces and just taking one piece a day, along with magensium, calcium, turmeric, vitamin D, the trace minerals etc. I have so far tolerated this fine and I intended on doubling the dose each week, so working up to a whole 5000mg maybe over 6-8 weeks.

    At the same time, I feel so lost and confused and afraid and alone and I would love a doctor to just say to me, this is what will work for you, you need to do this, and for me to trust everything was going to be ok, but right now I just don't know what to believe.

    There is a functional doctor with a qualification in nutrition in my city, I am thinking of going to him and just asking him to give me B12 shots, maybe they'll work quicker than this titrating up the B12 thing slowly, but I read this article which explains the dangers of B6 for some people (I totally think it was the B6 that made things go 'bad' for me) and that some people, say with mitral valve prolapse and arrythmias like me, should not take B12 shots.

    http://www.acu-cell.com/bx.html

    I am sorry to ask yet another, massively long question, but does anybody have any advice?

    Apart from all the physical stuff that's come up, what I really want to treat is on-off depression (sometimes I feel fine for weeks then suddenly have a momentous crash from nowhere) near constant anxiety and irritability, sensitivity to noise and feeling kind of hyper all the time. Again, I have been Vegan my whole life, and was diagnosed with Aspergers syndrome about 4 months ago.

    Thank you immensely, yet again, and I hope you are each doing well.
     
  2. CCC

    CCC Senior Member

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    It sounds like you are starting to get things worked out:
    I think you should feel very encouraged.

    If the antidepressants made you feel terrible, consider whether they are any good for you.

    Also note:

    1. Serum B12 is irrelevant as a measure - it tells you nothing. In our case, the level was fine. In addition, MMA was even comfortably in the normal range (something Rich said somewhere that he had seen before), yet the B12 sublinguals and later the B12 oils have changed our life. Clearly, something is missing that is not being picked up by blood tests.

    2. Like it or not, the slow titration upwards is the best way to do it in our experience. It leaves you in total control of how much is circulating through your system at a time. A couple of times, I have applied too much B12 oil, and the day spent waiting for that to work its way out isn't pleasant (no anxiety or heart issues, though)

    All the best.
     
    Kathevans, ahmo and JaimeS like this.
  3. purrsian

    purrsian Senior Member

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    Hi pumpkin,

    I'm sorry you're going through this and that doctors have been so unsupportive.

    Did you ever receive a diagnosis or explanation for this tachycardia?

    His advice was perfect, because he's such a terrible doctor that you should see someone else! Even if someone's problems were just psychological, do you think that blatantly telling them they are crazy and nothing they feel is real is going to help?! That is an insanely insensitive reaction of someone with no compassion. What you are feeling is real. I believe that CFS has elements of emotional/mental issues that make our symptoms worse, but are definitely not the cause. These issues are also present in most/all chronically ill populations and have nothing to do with CFS as a disease, it's just a result of living such a damn hard life and having no one believe you about things. It doesn't matter what long term illness/injury you have, you feel terrible about your life at some point. But since we have "no explainable cause" yet, CFS gets blamed on those same emotional/mental issues that you would think to be a normal effect for someone who has a much more understood long term illness.
    Also, doctors like to say things are "normal". It doesn't mean they are. A girl in my classes was trained as a nurse and told that pooping from twice a day to once a week was normal. Seriously, once a week, normal? I think doctors confused "not uncommon" with "normal". Just because something is not uncommon doesn't mean it's healthy.
    Having everything aligned is definitely a good thing, as it helps the nervous and circulatory systems work more efficiently. I find that my back goes out of alignment super easily as my muscles are quite weak, which affects shoulders, back, limbs. Have you considered acupuncture for helping you with your health? I use it once a week and am currently learning it at college, and it's helpful for almost any condition. We have so much out of balance in CFS and I like the Chinese medicine view of balancing the entire system. I've also used osteopathy, which has helped me with headaches and my sleep.

    Just had a quick google as I didn't know the name of your med, but I recognise it's brand name Lexapro. One of the first warnings was don't take if: you have a certain type of irregular heartbeat (long QT syndrome) or uncorrected low blood potassium or magnesium levels
    Please don't panic about this, but be aware that low magnesium levels are common in CFS patients, causing weak muscles. Also, if you don't feel great about taking the medicine to begin with, you should really weigh up the pros and cons. I've been on an SSRI (fluvoxamine) for over ten years as it's just too hard to come off. Withdrawal symptoms are hard on me, as CFS patients tend to be quite sensitive to meds. I haven't been severely depressed in years, but just can't get off them without making myself worse. I'm not saying don't take them, just be aware of actually pros and cons rather then the doctors "oh they're well tolerated" type speech. Google is your friend: don't take everything you read as true, but use it to educate yourself and critically evaluate what you read to make an informed decision.

    I think you've answered your own question about the antidepressants here, maybe keep them up your sleeve as an option after you try and see how your other treatment ideas go? Also treating underlying deficiencies can help with various symptoms like irritability, anxiety etc. I had vit B injections every 3 months for a year and it helped a bit, although personally acupuncture continually has probably helped more. We don't know the true cause of our problems yet, but until we do, increasing and maintaining our health with treatments like osteopathy, acupuncture, supplements, vitamins etc is a vital part of trying to live a normal life. You will find that as your health improves, you'll also feel better emotionally/mentally. It goes up and down still, but I've completely been where you are and it does get better.
     
  4. Mary

    Mary Senior Member

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    I totally agree about the anti-depressants, and if I had such a bad reaction, I would stop it immediately. Yes, the doctor you saw is beyond insensitive - he's a bad doctor! I don't know how they are taught in medical school, but this attitude unfortunately is not uncommon.

    5-htp can be very helpful with mood, without the awful "side" (actual) effects of ADs. I take it. Like with everything, start low and go slow.

    I think it's an excellent idea to see the functional doctor - I would do this as soon as possible. It sounds like you're on the right track with what you're doing and may just need some fine tuning of dosages, maybe add a few more things. He should be able to advise you re B6. Re feeling hyper etc. - your cortisol levels may be high, I don't know if this is the case, but cortisol levels are something the functional doctor should check, and if there's a problem, he should be able to help you normalize your cortisol. He should be able to help you with your B12 issues too.

    And you still may need more potassium - I have to take extra every day. It seems to go with ME/CFS, and especially when increasing B12 and methylfolate. And the functional doctor should be able to advise you on this as well, though I would still do my own research.

    Good luck! :thumbsup:
     
  5. Mary

    Mary Senior Member

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    @pumpkin - a few more things - B12 deficiency and folate deficiency can both cause low platelet count: http://www.livestrong.com/article/504636-platelets-vitamin-b12/
    https://draxe.com/low-platelet-count/

    Also, mitral valve prolapse has been linked to magnesium deficiency. I don't recall if you take magnesium, but I strongly recommend you check it out. I take magnesium glycinate, it's one of the best absorbed forms. If you're low in magnesium, that can cause MVP symptom, as well as anxiety, etc. Here are a couple of links, and if you google it, you'll find a ton more:
    http://drhoffman.com/article/mitral-valve-prolapse-3/
    http://www.ncbi.nlm.nih.gov/pubmed/3014234

    One more thing (ideas keep coming!) - low magnesium is linked to tachycardia etc. - another reason to look into this.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2464251/
    http://www.livestrong.com/article/477856-magnesium-deficiency-tachycardia/
     
    Last edited: Sep 17, 2016
  6. cman89

    cman89 Senior Member

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    http://www.doctorshealthpress.com/f...hould-be-careful-with-vitamin-b12-supplements <-This may be helpful, along with the fact that B12 and increased Glutathione can lower blood pressure, due to effect on vascular tension. Sometimes, BP can be altered in such as way that the heart can increase rate in response to that BP drop.
     
  7. caledonia

    caledonia

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    Hi pumpkin,
    I'm glad you were able to stop the overmethylation.
    I think you're on the right track and basically agree with what the others are saying.

    Regarding antidepressants, I've been through the mill with Zoloft. It worked ok for many years, but when I tried to get off, I ran into a horrendous withdrawal syndrome that screwed me up for almost a year. I was luckily able to reinstate the drug and then start over. I'm in the middle of a very long slow taper. I've been tapering 4 years and just found out I have another 5 years to go...I was on a full dose for 12 years and it's going to take me 9 years to get back off.

    If the antidepressant is making you feel more depressed, I don't think that's good. GI symptoms are typical when you're first starting, but that sounds pretty severe. Any time you start, stop or change the doses of an SSRI, you can have issues, possibly severe ones.

    I would agree with trying other methods first and save the antidepressant for if nothing else works. You can get a neuroadrenal test to test both cortisol and neurotransmitter metabolites and see exactly what you need to take. You may just need some 5htp or GABA to smooth things over until you get your B12 levels up and are making neurotransmitters again. If I'm remembering correctly, inositol converts to serotonin.

    I think seeing the functional doc is a good idea.

    The serum B12 test is not accurate because it only shows what's in the blood, not what's getting into the cells. You can be low, normal or high and still be low. Yours is borderline low and I assume you have many symptoms of deficiency, so in that case, you're low.

    I always err on the side of caution when starting new supplements. Start one new thing at a time, start very low with only a small portion of one pill and gradually ramp up as tolerated. Keep a symptom journal of what doses you're taking and any symptoms good or bad.

    We're so sensitive, it's easy to make ourselves worse...

    I also agree on getting a handle on magnesium and potassium (electrolytes) to help with heart rhythm issues. You could be deficient, it's common for ME patients. Mag glycinate is great.

    I take mag and potass four times a day because they go through my system so quickly.
     
  8. Kathevans

    Kathevans Senior Member

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    Let me just say that MeB12, perhaps along with a bit of folate has pretty much resolved heart arrhythmias and even a-fib for me. When I lower the B-12, as when my adrenals were producing too much adrenaline and I needed to add molybdenum to my protocol to resolve that, the heart issues got worse. I even ended up in the ER with a-fib. Only as I slowly titrated back up did the symptoms disappear. This has happened to me on two separate occasions and I now feel I wouldn't go off B-12 if you paid me! There's plenty that still isn't ironed out for me, but this much is clear. And my serum levels of B-12 were around 800.
     
    Mary likes this.
  9. Johnmac

    Johnmac Senior Member

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    I switched from sublingual B12 (messy, holed my teeth) to transdermal, which is easier to take (rub & forget) & has a higher uptake (~80%). I ditched the methylfolate & carnitine & potassium, & made sure I had enough iodine, C & above all B2. The B12 chemist at the above company says that my various problems "are not a B12 problem, they're a B2 and B12 problem".

    I reckon after 6 months that 90% of my chronic fatigue is gone, & several other problems have improved or vanished.
     
  10. pumpkin

    pumpkin

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    Hi @Johnmac, @caledonia @Kathevans @purssian @Mary @cman89 and @CCC, thank you so much for your extremely helpful replies, I can't say how much it means. I'm sorry it has taken so long to reply, I've been away from home and for some reason couldn't get online on my laptop. You have all persuaded me not to take the SSRI's without eliminating all the other options first. I'm just gonna do a2/3 month trial with the vitamins etc and stop going to normal doctors because they have so far only made things worse. I've ordered some 5-HTP and GABA, I'm currently at 0.6 MG of B12, taking it very slowly. Thankyou for restoring my confidence and reminding me that doctors are not infallible.

    @purrsian I was interested in your comment about acupuncture, I have heard deep pressure massage is one of the most helpful things to destress someone with autism and I was thinking of giving massage a try, but after reading your comment I wondered if I could go someone in between and maybe try Shiatsu? I know it's different to Acupuncture but do you have an opinion on it?

    I've also noticed a few people saying they take B-12 by oils. I saw the B-12 website but it looks so expensive. Do you guys really prefer it to sublinguals? Like Jarrow for example? You guys are so amazing taking the time to write long replies and even look into the issues I've mentioned when I know you're all struggling with your own issues and exhaustion, I really really appreciate it.

    I hope you all have a great day.
     
  11. Johnmac

    Johnmac Senior Member

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    Yep, I find the B12 oils more effectual than the sublinguals such as Jarrow, and also less damaging (tooth decay), and also a smoother ride (enters the bloodstream slowly via the lymph over maybe 7 hours), and quite cost effective because you need to take less.

    I go through a $40 bottle a month, because I choose two squirts a day - tho most people probably only take & need 1 squirt a day ($20/month).

    Supplements & mood: It often takes a bit of experimentation to find where your deficiencies/imbalances are. Some people's lives are changed by zinc (a friend recently threw away his psych meds after discovering Zn); for others zinc does nothing much, & it's 5HTP (or whatever).
     
  12. cman89

    cman89 Senior Member

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    Ive always been ok with sublinguals, but I still experiment with the dosing. For a while, I was setting the whole dose in my lip at once, and that seemed to be fine, but during periods of high sensitivity, that could be a bit too much at one time, so I may split it into smaller doses through the day....
     
  13. Kathevans

    Kathevans Senior Member

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    @pumpkin As to forms of body work from acupuncture to massage, I've tried many and each is great in it's own way. Personally, the most relaxing, and perhaps releasing for me has been cranio-sacral, myo-facial massage, a gentle pressure on those knots from feet to head, with a concentration on the top of the spine and base of the neck. For years this kept me in fairly good order...these are my worst areas. Ane I'd always fall into heavenly sleep as she worked my head and neck, stretching, gently pulling, ultimately helping the flow of the cerebrospinal-spinal fluid.

    I think I need to make an appointment soon,myself!
     
  14. CCC

    CCC Senior Member

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    @pumpkin

    The b12 oils have changed our life. Definitely worth it.

    Until recently, we were on two of the adenosyl/methyl slurps a day + one methyl (that's right - three a day total). It adds up, but it's easier to manage and better on the body.

    That said, you are on such tiny doses of sublingual B12 by our standard, the B12 oil might be too much. You might want to build up to a larger dose of sublingual first. @John Mac or @caledonia might have a view about that.
     
  15. caledonia

    caledonia

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    @pumpkin

    Pumpkins says she? is at 0.6mg which is 600mcg. Then she will gradually increase to 5000?mcg over 6-8 weeks.

    If the B12 oils deliver at lot more, then it sounds reasonable to get within range of the oils with the sublinguals before switching over. (Assuming the amounts are tolerated at the higher doses.)

    It sounds like the absorption rate of the oil is much higher than sublinguals, so I'm not sure how to judge if the doses are equivalent?

    At any rate, if you're able to tolerate 1000's of mcg of B12, you may be one of those people who aren't that sensitive to B12, so it may not be an issue.
     
  16. pumpkin

    pumpkin

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    Thanks so much once again guys, it'm definately interested in the oils. Even at 0.6Mg I've been having the chest pains again. I don't know if it would be triggering Tachyacardia again because of the Beta-Blockers I'm on now. I definately think its either a Calcium/Magnesium deficiency along with the Potassium, thank you for all your advice. I will up both and see how things go from there. And yes! I am happily a she! :) hehe.
     
  17. pumpkin

    pumpkin

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    @Johnmac I'm really happy your friend got better with Zinc, that's so great for them :) May I ask how much they were taking? I don't supplement with it because I think i meet the RDA from food and I read you can get anemia of you oversupplement with it? Sleep well everyone!
     
  18. Jimbo39

    Jimbo39 Senior Member

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    Hi @pumpkin I wonder if you're getting enough saturated fats because of being vegan. I've found them to be very helpful. You don't have to get them through animal sources. Coconut oil, flaxseed, sunflower lecithin. Phosphatidylserine/choline helps produce the neurotransmitter acetylcholine which helps with learning, memory, and MOOD. It also regulates smooth muscles like your heart. It's really important if you're taking anticholinergics like sleeping pills, antihistamines, and antipsychotics to name a few. Remember your brain is mostly fat.
     
    taniaaust1 likes this.
  19. pumpkin

    pumpkin

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    Hi @Jimbo39, thanks for the tip. I hope your methylation stuff is going well! I don't know what saturated fats are :/ I eat 2 tbs of flaxseed oil every day, 2 tbs of hemp seeds, 2 brazil nuts and a handful of sunflower seeds, plus cooking with olive oils, so I know there's some type of fat! :) I will investigate and look up this acetylcholine, thank you very much!
     
  20. Jimbo39

    Jimbo39 Senior Member

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    I think good fats have been demonized by our society. I eat lots of it. Now sunflower lecithin, coconut oil (added to oatmeal. Bananas, avocados), fish oil, sardines.
     

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