1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
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  1. arx

    arx Senior Member

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    Quoting Freddd from http://forums.phoenixrising.me/index.php?threads/hypersensitivity-identified.16104/ :

    "It is these extreme deficiencies that appear to damage the neurons and causes the extreme hyper responsiveness. A micro titration of mb12, adb12 and l-carnitine fumarate can build the levels up, eventually to levels that according to the Japanese studies, up-regulates neurological healing. As the damaged neurons are reactivated they are extremely irritable and there is an increase in symptoms. Tapering the benzos may be helpful for turning down the secondary low dopamine symptoms. The benzos can cause a change in the dopamine receptors which appears to cause these Parkinsons type symptoms when a person has the adb12/carnitine deficiency damaged neurons.
    This one subgroup, with hypersensitivity to at least adenosylb12 and/or l
    carnitine fumarate and possibly mb12, with lots of anxiety, possibly with emotional outbursts, possible instant rage or killing rage, OCD or OCD like, doesn't get a thrill from thrilling activities, fear instead. Then adb12, mb12 or l-carnitine fumarate can, in tiny quantities trigger any or all in succession of the emotional responses. Also, benzos are frequently prescribed for the deficiency symptoms, and when the dose is large enough, it has an effect on the dopamine receptors causing the above emotional responses which are mostly part of the "Parkinson's personality" and in benzo-board lingo is "tolerance withdrawal" rather than "late onset side effects".

    I am working on the adb12 titration these days and I do experience a great deal of anxiety. So I started taking Clonazepam( 0.5 to 0.75 mg/day) and felt better. When I read the above link, I could not understand it properly, but it seems to me that I should stop taking Clonazepam?
    I do need something, as I feel wired most of the time after starting adb12. Any suggestions will be very helpful.

    Thanks.
  2. Nielk

    Nielk

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    arx,

    I don't exactly understand everything that Fred wrote there but, I can definitely relate to the "Benzo tolererance withdrawal"
    that he describes. It is the scariest position to be in and I would warn anyone not to go that route....i.e. if at all possible, stay away from Klonopin. Unless you need it to save your life. There is a reason why it's a favorite street drug! In my opinion, taking this drug is like playing Russian roulette with your brain. I was on Klonopin for 8 years. through a miracle, which you probably will be reading about soon, I was saved and am off ir now but, I had a spect scan taken from my brain a month ago and it shows the damage from Klonopin use.
    I know that many people take it and feel like its helping them and feel no adverse effects and they feel safe taking it. Maybe it is for them but, still they don't know what it's doing to their brains from long term use. It's just like a long time chain smoker friend of mine. I keep warning him that he is killing himself with the constant smoking and he laughs it off. He says that it doesn't affect him and he is fine. ITS SAFE FOR HIM! I tell him yes, you feel fine now till the day you find out you have a major lung problem and then its too late. Cigarettes come with a warning that it could damage your health. Klonopin comes with a warning that it is not SAFE for long term use. There is a reason why these warnings are there.

    If I have scared some of you who are taking it now or are contemplating taking Klonopin....good! I wish someone had scared me before I started.
    Esperanza likes this.
  3. arx

    arx Senior Member

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    Nielk

    Thanks a lot for the info. I asked around and what I could get is that benzos are safe but only the addiction and tolerance part is something to worry about. After reading your experience, I'd like to ask that are there any safer alternatives available?
  4. Nielk

    Nielk

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    I'm not a medical doctor so I can't really recommend. I do know that now I am on Trileptal which I am told has no
    danger of addiction. I am sure that there are others too.
  5. Dreambirdie

    Dreambirdie work in progress

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    My past experience with the benzos was pretty horrible. I have already written about this several times, so I don't want to go into it all again. Briefly I will say they are the most toxic drugs I have ever taken. I would avoid them at all costs.
    Esperanza likes this.
  6. Chris

    Chris Senior Member

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    Hi, benzos are definitely not safe for long term (and with benzos anything over a week is long term) use--there is well documented evidence of cognitive deterioration over time (sorry, don't have the ref at hand now), and other forms of neural damage. I have used them, and now thankfully am off, though still have a bit of Clonazepam, and maybe once or twice a month take 1/4 of a .5 mg pil if I am having a really bad day--but that is very rare these days. Klonopin/Clonazepam is a VERY powerful drug, designed to control seizures--it should not be taken lightly. .5 mg is the lowest dose commonly available, but there is a .25 pill (very small, blue) and in Europe there is available a .125 pill.
    Helen Ashton maintains an excellent website on how to get off these things--if you have been on for a while, you MUST taper off slowly or risk triggering some very unpleasant effects, which in some cases can become very serious.
    Best, Chris
    sianrecovery likes this.
  7. Nielk

    Nielk

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    Here is Dr. Ashton's Manual online.http://www.benzo.org.uk/manual/
    It is the most comprehensive site that encompasses everything one needs to know about Benzodiazapines.
  8. xchocoholic

    xchocoholic Senior Member

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    I was on klonopin everyday for 16 years for nocturnal myoclonus. In 2006, I weaned myself off of this med AFTER removing
    most toxins from my diet, esp gluten. I used theanine instead when needed.

    But I just started using 1/4 of .125 mg sublingual
    at night if I absolutely can't sleep or have been sleep deprived for a couple of days. Tropical
    storm Debby kept me up for several nights due to tornado warnings so I finally took klonopin.

    Also, my neighbors just love fireworks so I'll probably need these off and on for the next
    couple of days. I feel slightly hung over / mentally sluggish so I try not to take these.

    This seems to work best when I add it to 1 - 2 mg melatonin and 33 - 50 mg 5htp.

    My mri used to show white lesions but these went away post gf diet. Now my mri is ok.

    Tc .. X
  9. Victronix

    Victronix Senior Member

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    Amazing. Is that common, visible brain lesions from gluten? I guess I wouldn't be surprised.

    Good luck on this issue. Theanine sounds like a good solution.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    arent brain lesions and other mri abnormalities common in cfs me anyway??
  11. Esperanza

    Esperanza

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    I agree with Nielk - don't even go there unless it is a life threatening situation.

    Fred is helping me taper off as I am in the same postion Nielk was in and it's tough going. For other medical reasons, it is not safe for me to cold turkey unfortunately as Nielk was fortunately able to do so I am weaning slowly off at present.

    Benzo tolerance - if you are unlucky enough to develop this is - is the worst thing you could imagine and coming off is extremely hard. My first attempt last year at tapering nearly wrecked my marriage and my sanity but thankfully I found Fred a few months ago who is kindly helping me do a much safer and gentler taper - but even that isn't without bad days....

    If I had known ten years ago what I do now, I would never have touched a benzo. Once I am off, I never will again!

    If you are struggling with adb12, go back to a level you felt able to cope - don't add in a benzo, you will be creating insurmountable problems for yourself down the line.

    Someone mentioned Theanine - this might be a good option for you, Taurine helps me a little too. Other things to consider would be Magnesium - if not tolerated orally, try Epsom salt baths or Magnesium oil etc.

    Take care,

    Love Esperanza x
    arx and Nielk like this.
  12. xchocoholic

    xchocoholic Senior Member

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    I don't know how common brain lesions are from gluten, but the gf diet is commonly used as part of the treatment for ms.

    There appears to be a great deal of overlap in gluten sensitivity and cfs. Fwiw, the nih states on their
    celiac info page that celiac is misdiagnosed as cfs. I just happen to have both diagnosises. Which came first is anyone's guess. Recent studies are
    saying that Celiac disease is just one manifestation
    of gluten sensitivity.

    Tc .. X
  13. JT1024

    JT1024 Senior Member

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    This is a scary thread.

    My primary care physician is very upset that I've been on clonazepam (Klonipin) for a long time. When first prescribed, I took .25 mg at bedtime as needed. I'm now taking .5 mg at bedtime and periodically take .25 during the day.

    I've been in a major flare the last several weeks with severe muscle cramps that were not relieved with magnesium malate. I'm still dealing with the spasms but the clonazepam made a huge difference in spasms throughout my body.

    I would love to know of an alternative but right now, clonazepam is working.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    an alternative for muscle spasm and pain is lyrica or neurontin. I would try to avoid increasing klono dose but stay at the previously effective dose and maybe add something natural or change to another sleep med altogether. I think if one needs a benzo to sleep its best to use one of the z drugs at the minimum dose and if it stops working change to another, try to alternate benzo and z drug use with something else like antihistamine
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi JT,

    Yes, it is true that a percentage (no idea what percentage) have trouble with getting addicted to clonazepam. But others take it for years without needing to raise the dose or getting tolerant. I am one of those. I take a very low dose when I take it, but I only take it when I need to relieve symptoms and that is only once a day every few days.

    In fact, over the years, I find I take it much less--because I don't need it as often. So, maybe the real question is whether you have become tolerant--i.e. what happens if you don't take it for a day or two. I wish there were a way to predict who will have trouble with this drug, but I haven't heard of a way yet.

    Best wishes,
    Sushi
  16. caledonia

    caledonia

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    My suggestion would be to stop taking adB12 until the wired feeling wears off. Then restart at a much lower dose that you can tolerate without feeling wired. You may have to play around with the dose some to find the right dose. Once you are on the lower dose for awhile and are tolerating it, you can try increasing again.

    I agree with the others - avoid clonazepam like the plague. Try theanine, magnesium, taurine, kavinace, etc.
  17. arx

    arx Senior Member

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    JT1024

    I also felt relieved with Clonazepam. Helped a lot with the muscle cramps and the wired feeling. I took 0.5mg/day for 4 days. Will stop taking it now and search for alternative methods to deal with these problems.
    Nielk likes this.
  18. arx

    arx Senior Member

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    caledonia
    Yeah. Doing that only. Stopping adb12 and restarting the game. Will check out your suggestions. Thanks.
    Nielk likes this.
  19. jeffrez

    jeffrez Senior Member

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    I had horrible anxiety on ab12 at first. Your dose is too high. You need to stop taking it until the anxiety is gone, then start again at a much lower dose. You don't need to take it every day. Just take it once or twice a week at first, at a low enough dose that you don't have the symptoms. Then just increase gradually.

    I agree with Sushi that in some ppl benzos are useful, helpful and don't lead to dependence - cheney has recommended klonopin for years - and a short course to help with a transient problem is not likely to lead to addiction. But if the problem is actually from the ab12, taking benzos might not be the best first course of action. In that case, you'd just be compounding your problems by then possibly getting dependent.

    So go off the ab12 and try stuff like kava, passionflower, rooibos, etc. to deal with the anxiety if you need to, and only take the benzos if absolutely necessary. Once you're off the ab12 for a while though you should be fine.
  20. arx

    arx Senior Member

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    jeffrez
    Yes, I will restart adb12 with a crumb once again. I was taking 1/4th of the Country Life Dibencozide sublingual. I need to build it up in order to add L-Carnitine later. Isn't once/twice a week very low? Won't it take too much time to reach the level where I can add carnitine then? (This treatment does require a lot of patience! :thumbdown:)

    I think my problems stem from both, adb12(causing over-stimulation and anxiety) and the fact that my symptoms were neuropsychiatric in the first place.With me,the symptoms get aggravated when supplements are added, which I guess is a good sign,right?

    So yes, I'm going off the adb12 for some time, then restarting it with a low dose. I won't take benzos and will see other methods for dealing with the anxiety if needed.Will check out your suggestions.Thanks!

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