Transdermal B12 oils
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arewenearlythereyet
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Sorry you are going through it. It took me about 4 weeks to stabilise. I can look back at my symptom diary if it helps? I take 1200mcg Methylfolate with 2 squirts of the hydroxy/methyl blend. Are you replacing injections or sublinguals with the oils? My experience is that the oils are much more potent than sublinguals.
garyfritz
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Ouch. Sorry to hear that!! Clearly you have something different going on than I did. I had no detox or stabilization period when I started using the oils -- it was just "more gooder" than the sublinguals I had already been taking.
So I can't offer any advice. It sounds like @arewenearlythereyet has more relevant experience than I do. Good luck!
So I can't offer any advice. It sounds like @arewenearlythereyet has more relevant experience than I do. Good luck!
I was using Dr Yaskos sublingual sprays plus 500mg of Idebenone and Magnesium. No other mito supports on board. I could tolerate mega doses of the sprays 10mg, 12, 15mg.
Now Idebenone is causing me to have breathing problems. I have tolerated it brilliantly for 18 months, it has improved my life in a major way, and now I can not use it. I am very upset by this.
This quote from Rich may explain:
In cases in which Co Q-10 supplementation is not helpful, I suspect that it is because the root cause of mito dysfunction (i.e. glutathione depletion) is still present. Trying to speed up the transfer of electrons to the respiratory chain before correcting the partial block in the Krebs cycle may be producing additional oxidative stress in these cases.
The B12 has effected by biochemistry, now adding Idebenone means creating stress, instead of supporting my body.
This has been a huge knock to me. I feel hopeless right now.
arewenearlythereyet
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Oh that sounds horrible. It sounds like we have a different regime though if you're not taking any other b vitamins?. I've had a look back on my symptom tracker though and it took a good 5 weeks after starting for things to settle down. Here is a quick summary of what happened for me:
After 2 weeks of applying the oil
Low fatigue and variable energy throughout the day
Folate deficiency symptoms increased (mouth ulcers, blurred vision, waves of nausea and indigestion)
This lasted for up to 4 weeks
After this I stabilised and now have:
Less headaches
More energy/less fatigue during the day
Morning sickness upon waking a lot reduced
Sleeping better
Nausea and indigestion during the day a lot reduced
Less episodes of feeling confused/out of it
I weathered the storm but your symptoms seem more extreme than mine? I theorised that these initial start up symptoms were due to a lack of folate or b2/b6. I found that the oils were way more potent than the sublinguals I was taking. I tweaked the timing of my folate and b complex throughout the day (every 3-4 hrs). I also found that my need for magnesium Went up so I upped the frequency of my Epsom salt baths and increased the magnesium oil I apply in the morning. This seemed to reduce some of the folate deficiency symptoms. I do have a problem with folate uptake though so you may be different. The problem is that b12 and folate deficiency are always so similar. If you haven't been taking folate, perhaps have a look at this first and then maybe look at your b12 dose.
I found Greg really helpful at b12 oils so it might be worth bouncing any ideas off of him?
The whole thing can be a rollercoaster I know I hope you get some stability soon.
Let me know if you have any questions about the above on any specifics?
Maybe I have had a huge potassium dump? This would cause immense muscle fatigue, would it not?
I have no doctor input, so I am guessing. Really I need some in depth blood work and testing to find out what is going on. Not easy in the UK. The NHS tests available are very limited.
I am thinking of seeing a cardiologist in Salford who has an interest in POTS, but my guess is that he will be useless.
arewenearlythereyet
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Most probably..... we are all dabbling around the periphery until there is a breakthrough for treatment. I'm avoiding the NHS as much as possible lest I be carted off to some pottery self help club to help me clear my mind!
Sounds like the B12 has increased your need for folate and/or potassium. Try adding in each in reasonable doses and see if symptoms subside.
Yes I agree.
Fatigue all over, tingling in limbs, tiredness, tachycardia. All the signs of low potassium
I am stopping B12 for a week, using high dose balanced electrolytes and seeing how I get on. I think this has hit me because my lithium is up, meaning I can transport B12 effectively. In the past it has been low, meaning mega doses have no detox effect.
Even mega doses sublingually are likely result in lower doses than the topical route. At best sublingual absorption is around 10% (often much less, eg with a sublingual spray), topical 80%.
Like the others, I never had a bad experience from the oils. They kept me awake at night for the first 2-3 weeks was all.
You need to email Greg, the maker of the oil. Give him some details like the above, & what else you are taking.
I took no B12 for 24 hours, then tried using 1 spray of the mixed B vitamins one hour ago, rubbed into stomach.
After a few minutes my arms started to ache, forearms and biceps tight. I kid you not, literally within minutes.
Now my hands are tingling and my arms feel 'floppy', a little bit shaky.
After a few minutes my arms started to ache, forearms and biceps tight. I kid you not, literally within minutes.
Now my hands are tingling and my arms feel 'floppy', a little bit shaky.
It could be the B Complex dosage is too much.
High B Complex can lower magnesium which in turn can unbalance other minerals. See from these mineral wheel interactions:
http://www.traceelements.com/docs/Magnesium Wheels.pdf
Most women with electrolyte problems also have a lot of unbound copper floating around in their tissues and organs due to low amounts of copper binding protein Ceruloplasmin.
Increasing B vitamins particularly B6,B3 &B5 can cause an unpleasant copper detox of this unbound copper from tissues and organs.
http://www.traceelements.com/docs/Copper Wheels.pdf
http://www.holistichelp.net/blog/copper-toxicity-and-how-to-reduce-elevated-levels/
Interesting. I have had DNA Adducts test which look at toxins stuck to the mitochondria, and I had COPPER there!
I definitely have copper floating around and sticking to mitochodria, inhibiting ATP.
The mixed B vitamin spray only has really low doses. I think I need to run this test https://www.doctorsdata.com/red-blood-cell-rbc-elements/
The RBC test will give you some idea if copper levels are significantly elevated,( it will show you are detoxing), but it will not measure the amounts of metals in organs such as brain and liver where unbound copper tends to accumulate so it will not indicate the amount of overall body copper retention.
Women can also get high copper from:
BC pills
copper IUD's
Vegetarianism
Low zinc levels(stress lowers zinc)
High Estrogen
I know you insist I am a women, but I am really not
Your input has been very useful, thanks very much. What you are saying makes sense.
With having copper stuck on my mitochondrial cells before, it would be safe to say I have copper floating about. I think recent exercise(went too hard and crashed), then B12 sprays have caused a release of this. That would explain symptoms. No fatigue in arms for the last year, then all of a sudden, tight biceps and forearms, immense fatigue, headaches when standing, tight chest, racing heart, heartburn, tingling in limbs.
It would make perfect sense that a copper release into bloodstream is causing this. All these years it has been dormant, but I may have had a copper issue all along.
I think I will use activated charcoal for a week, then start having lymphatic drainage massage again. Raymond Perrin's work is right on the money IMO. He says those of us who develop CFS/ME can not remove toxins like a normal individual would, thus these toxins accumulate in tissue, brain etc, causing our symptoms. He says this is down to the lymphatic system. I agree(although there are other factors involved). Everyone gets exposed to environmental toxins, why do some get ill, whilst others bounce back? All genetics? If we can not remove these toxins, what happens?
I have had lymphatic drainage done before. For the first 3 months I was extremely ill as toxins moved around my system. I think it would work again. Safer than chelating.
So pleased I read this thread. I started my 15 year old son on the ad/me B12 oil three weeks ago and have most definitely seen positive changes in mood, cognition, concentration and general interest in life. He still looks like Caspar the ghost and struggles to wake up and function before 11:00am but this does seem to be improving a little too. He finally agreed yesterday he was feeling a bit better and thinks its the oil that is helping. It had an affect in 4 days. Energy level is about the same as before.
The only other supplements he takes daily are 2 x Vegepa- fish oils for about 6 months now and a good multi vitamin inc b2. I'm hoping this isn't temporary but even if it is we'll take that! Thanks PR
The only other supplements he takes daily are 2 x Vegepa- fish oils for about 6 months now and a good multi vitamin inc b2. I'm hoping this isn't temporary but even if it is we'll take that! Thanks PR
garyfritz
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Who is using the hydroxy/methyl oil?
I had tested some a while back, and I thought I got some benefits from it. So I ordered some more, and accidentally ordered more than I intended. Then when I switched to 100% hydroxy for a while, a bunch of my symptoms came back. 1 pump each of hydroxy and ado/me also gave me problems. Apparently I need 100% ado/me.
So I have 2 new, unopened hydroxy/methyl bottles that I would like to sell. If you ordered them from b12oils.com they would be $50 ea + $20 shipping to the US, or $40 ea + $20 shipping if you ordered 3 or more. I will sell these two, shipping included (US only, sorry), for $80. That's below my cost, with free shipping. PM if interested!
I had tested some a while back, and I thought I got some benefits from it. So I ordered some more, and accidentally ordered more than I intended. Then when I switched to 100% hydroxy for a while, a bunch of my symptoms came back. 1 pump each of hydroxy and ado/me also gave me problems. Apparently I need 100% ado/me.
So I have 2 new, unopened hydroxy/methyl bottles that I would like to sell. If you ordered them from b12oils.com they would be $50 ea + $20 shipping to the US, or $40 ea + $20 shipping if you ordered 3 or more. I will sell these two, shipping included (US only, sorry), for $80. That's below my cost, with free shipping. PM if interested!
@keenly , sorry to hear about your struggles. I would recommend sending Greg an e-mail ( you can do that from his website, or at least find his e-amil address there). He gave me some very useful advice based on methylation biochemistry, although I´m not one if his customers. I shouldn´t refer this as it´s better you get the facts from the source. I can tell that thanks to his advice I began feeling better again.