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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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  1. arx

    arx Senior Member

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    I'm following the active b12 protocol and many times I experience awful mental states(irritability,anxiety,anger,emotional outbursts,exhausted).Not surprising as my symptoms were neuropsychiatric in the first place,but it becomes really hard to deal with them. It might be the adb12 causing it, but I'm titrating it and watching it closely.

    If you know any ways to deal with this awful wired feeling which makes everything seem like madness,please share! I have not experienced a calm state of mind for many months now.
     
  2. Crux

    Crux Senior Member

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    Hi Arx;

    It's possible that you are experiencing what Rich has described as overdriving the methylation cycle.

    I'm trying to understand what is happening biochemically, but I'm limited in that way, and I'm not sure that all is known about methylation.

    So I'll just bring up what helps me with this process. I find that I'm having to develop my own personal protocol, because some supplements work well for me, and others...not so well. Not only must I find which supplements are effective, but what specific amounts work better. With some, I need higher amounts, but with most, I need lower. For a time, I was trying individual B vitamins to find my own type of B complex. I'll probably continue this, but with less extremes than before.

    I also find that the adB12 can be overstimulating. I only take small amounts once every two weeks or so. I reduced folate to 600-800 mcg. daily now. I do, however, need higher amounts of B12. I take a low dose B complex daily. ( I consider low dose to be less than 25 mgs. daily).

    These amounts work well for me, but other folks find they need higher or lower dosages for their own protocol.

    Zinc has really helped me with the wired feeling of anxiety, agitation, irritablity, and insomnia. I generally take a supplement with 15mg. zinc and 1 mg. copper. in the morning with breakfast. It has taken a few months for these symptoms to subside, but each day has become noticably better.
     
  3. awl29

    awl29

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    Hi arx,

    while there definitely is the danger of becoming addicted to them, the benzodiazepines (Lexotanile and others) for me do indeed help big time against anxiety, agitation, irritablity, and insomnia (but I think you will need a prescription in most countries).

    For myself, I have decided to prefer going through a benzo withdrawal phase after having improved from those excitatory symptoms and regained some more (mental and physical) strength rather than suffering all the time from those horrible symptoms (anxiety during the night while being sleepless being the worst of them all)...

    BR,
    awl29
     
  4. SickOfSickness

    SickOfSickness Senior Member

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    GABA is calming to me.
     
  5. newradost

    newradost

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  6. jace

    jace Off the fence

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    Adrenal support? Check out Nutri Adreno-Max, and the Adrenal extract. If your bp is not high, liquorice helps - I used to make a tea with the root, but it does raise blood pressure, and my doc was not happy and wanted to prescribe meds to lower. I didn't take those, I just stopped the liquorice. BP went back down. Doc thinks they did it ;) I then had to find alternatives.
     
  7. newradost

    newradost

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    As I know Licorice is not advised when immune system is too activated. Licorice is acting like stimulant and the too exhausted immune system is over... As well as gen-shen. Both are not good in tired adrenals
     
  8. jace

    jace Off the fence

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    That's a matter of conjecture - several people including me have found it really useful for the wired but tired state. It is recommended by some adrenal docs, and is in some adrenal supplements.
     
  9. newradost

    newradost

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    Sure, my child goes to slow anaphylaxis by genshen and licorice and I think that explains it.
     
  10. arx

    arx Senior Member

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    Crux
    It is possible that I am overdriving the methylation cycle.I will look into it. I am titrating on the adb12 these days,as I would like to add Acetyl L Carnitine later. Thanks for your suggestion on zinc,will definitely check it out.

    awl29:
    I tried out Clonazepam. I'd like to take it for a while to figure out its benefits. But there's this whole addiction thing about benzos and that they should not be taken for a long period. Any personal experience/opinion on Clonazepam, its effects, side effects,dosage will be very helpful .Thanks.


    newradost
    Good point about niacin. I've read on how it balances the methylation cycle. However, I could not gather whether I am under or over-methylated. I've bought niacin, will definitely experiment with it.

    jace
    Will check out your suggestion.Thanks.
     
  11. awl29

    awl29

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    Sorry, arx,

    I cannot comment on Clonazepam specifically.

    I have tried myself Lorazepam ("Ativan" in the US, AFAIK) some years ago when I had the first flare of psychiatric anxiety and agitation symptoms from my Lyme/Bartonella infection (while I did not yet know what I was suffering from), which I took for about 3 months in relatively high doses (up to 4mg, IIRC) and had a really hard time then getting off relatively "quickly" throughout six weeks.

    I am currently taking Bromazepam ("Lextotanile") since about 9 months in low dosages (typically 3mg up to 6mg when needed), as my LLMD had good results with this benzo in particular, and the plan is to wean it out very slowly throughout several months after my Bartonella issues and my CFS/methylation/metabolism issues are at least so much better that I feel stable without a constant feeling of subtle anxiety and agitation.

    This site:

    http://www.benzo.org.uk/

    has a ton of very valuable info about benzos and withdrawal ("The Ashton Manual"), and also offers concrete withdrawal schedules based on your current medication:

    http://www.benzo.org.uk/manual/bzsched.htm

    The plan always is to switch any other benzo drug to Diazepam as this has the longest half-life and wean this out slowly.

    So be indeed warned about benzo addiction and the need for withdrawal, but as stated previously, in my current state, I prefer going through a benzo withdrawal phase after having improved from my current symptoms and regained some more (mental and physical) strength rather than suffering all the time from those horrible symptoms.

    HTH & BR,
    awl29
     
  12. arx

    arx Senior Member

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    Ok.I'm currently trying melatonin for insomnia. Will take Clonazepam when it is really required.Thanks a lot for the info,awl29.
     
  13. taniaaust1

    taniaaust1 Senior Member

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    The melatonin probably wont be enough if you are that wired as being wired inself can really affect sleep. You may need both that and something else too. Melatonin isnt a calming med.
     
  14. cureminded

    cureminded

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    Hi Arx,

    I found that the methyl B12 has a calming effect for me. I also found out that I need to take it (5 mg) late in the evening to feel energetic and calm in the morning. In the morning I take 5 mg as well. I also take I take the adenosyl in the afternoon because that seems to work best.

    Hope that helps,

    Cheers
     
  15. Mimi

    Mimi Senior Member

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    I just talked to a friend who is doing the protocol. She says 25 mg. of niacin stops her methylation cycle from overdriving.
     
  16. cureminded

    cureminded

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    I should add to the above that I seem to have a peak about 7 to 8 hours after taking the methyl B12. So if I take it around 20:00 I wake up at 04:00 unable to sleep. In my case I really need to time it. I seem to get realy edgy (back to pre-methtyl B12) if the methyl B12 levels are too low.
     
  17. Mimi

    Mimi Senior Member

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    Thanks for the tip. I just started the SMP and I have been wired all week. I finally realized what was happening after almost no sleep 3 nights out of 4. Just 1/4 of one tablet of the NHF was all it took. I later added hydroxy B12 and Methylmate B but it was the TMG that got my methylation cycle going - or got me wired, depending how you look at it. After muscle testing, I decided it was the former, and cut my cortisol prescription by 75%. That allowed me to sleep 8 hours last night.
     
  18. arx

    arx Senior Member

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    Yes, I am experiencing that now. Will take the necessary measures.Thanks.

    Sometimes it does have a calming effect but the adb12 makes me so wired. Just on mb12 for now, will add adb12 in small steps. Think that should help. Thanks.


    There is a chance I might be overdriving when I feel wired but then again I am not sure. Is it safe to take niacin? I've heard some horrible side effects.


    Yeah, even I have experienced something similar at times. Working on it.
     
  19. cureminded

    cureminded

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    arx likes this.
  20. caledonia

    caledonia

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    If it was me, I would stop the protocol or whatever supplement you think is causing the wired feeling. Try the things that Ben Lynch mentions in the mthfr.net presentation mentioned above to slow down methylation. Let everything clear out until you're back to calm again. Then restart at a much lower dose that you can tolerate. If you're not sure what is causing the wired feeling, then restart one supplement at a time. Takes notes on your symptom so you know what is doing what.
     

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