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Any Dr Cheney patients? Does he still stand by Clonazepam (low dose) for excitotxicty

Discussion in 'General Treatment' started by hixxy, Apr 19, 2012.

  1. taniaaust1

    taniaaust1

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    Im a bit different to that when I have excitotoxin problems. Its like Im trying to think fast/hyper but not that either..its hard to explain.. its very ungrounding).... but can be very scattered in my thoughts due to it.

    I actualy think that state in the past ended up up making me at times feel more tired, as the bursts of whatever im doing mentally are more intense so draining
     
  2. taniaaust1

    taniaaust1

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    Any more of Cheney's patients out there to respond? cause I'd heard in the past that they werent allowed to share his treatment protocols, so I'd love to hear more from you guys about this.
     
  3. hixxy

    hixxy Woof woof

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    Does he have a huge number of patients? I hear his fees are a tad excessive.
     
  4. taniaaust1

    taniaaust1

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    Nielk .. you havent disturbed community spirit. I think it is great everyone is hearing both sides of the fence. It allows more informed choices. I think that is what the big issue is.. people not being informed enough by their doctors so they dont get to make a proper decision of things.
     
  5. taniaaust1

    taniaaust1

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    Its sad to hear that some doctors are prescribing so much. My own CFS specialist has set the maximum dose of Temazepam (no matter how bad my sleep issues are) at 15mg and he's only really okay with me taking twice a week.

    Its terrible hearing your doctor left you that way. Im glad to hear you have a doctor now, really trying to help your sleep issues (what is now being suggested to you is all the stuff doctor worked with me with..before even drugs were considered.

    Its madness doctors are prescribing drugs before everything else has been tried. Even psychotherapy was tried in my case (my psychotherapist thou suggested sending me to a sleep clinic for help as she was unable to help me in this area).

    Best luck with successfully getting off of the drugs
     
  6. August59

    August59 Daughters High School Graduation

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    The .5mg dose is extremely small, especially if taken no more then 3 to 4 times per week. But to be safe, find a pill spliter and use .25 mg for a couple of weeks. You could even add some L-theanine that last week. I'll be willing to bet that you will not have any problems at all. If sleeping is an issue the first few nights after stopping buy you show diphenhydramine (Benadryl) and start 25mg, but you can go to 50 mg total.
     
  7. hixxy

    hixxy Woof woof

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    I find the klonopin eases my overstimulation, increases energy and elevates my mood at 1mg. I only user it intermittently tho.

    hixxy
     
  8. dannybex

    dannybex Senior Member

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    Mainly 'sudden' (within an hour or two) tingling and numbness in my feet and toes -- like I'm wearing individual socks on each toe -- and sometimes in my hands, but also increased anxiety and overstimulation. And that was with just small amounts of b6 -- 10 milligrams or so. The riboflavin definitely helped with these symptoms, especially the tingling and numbness.
     
  9. xchocoholic

    xchocoholic Senior Member

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    Thanks for the link Danny. I only looked through it quickly but for now it looks like it pulls together what I've been noticing. I'm taking antibiotics for a UTI, so I'm not sure when I'll have the brain power to think this through .. tc ... x
     
  10. xchocoholic

    xchocoholic Senior Member

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    Thanks. I haven't been able to tolerate b2 due to extreme bladder pain but I'll keep this in mind. Maybe there's a way to get it via the skin.

    Fwiw, is it possible that we simply can't tolerate most supplements ? I've read that they can contain
    toxins. Esp since no one is monitoring these. If the amount of gluten in those gf foods is any indication
    of how trustworthy corporations are, we're screwed.

    Speaking of this, I had to return many bottles of supplements because they were cross contaminated with gluten or soy. And they said gf or soy free on the label. This is the upside of knowing our food reactions.

    I didn't get a toxic reaction from the 5 - 6 Meyers cocktails I got last year.
    I didn't notice any improvement either tho. So either these chemicals are less toxic in iv form or getting these nutrients intravenously avoids the toxic response in my digestive tract.

    Has anyone else here tried ivs or injections containing the same nutrients we react to in supplement form ?
     
  11. xchocoholic

    xchocoholic Senior Member

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    I get this too sometimes esp if I've been overdoing it. But if I'm rested meaning I don't have pem, I
    turn into Chatty Cathy on neurotoxins. I just remembered provigil did this to me too.

    Tc .. X
     
  12. xchocoholic

    xchocoholic Senior Member

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    Hi again,

    If I haven't already, I just wanted to mention an article I read on prohealth about cytokines in cfs.
    If you google prohealth cytokines it's the first article.

    He explains how reducing these can help. In my case, diet was the biggest source of these.
    The paleo diet eliminates most of these but the wahls diet provides the most nutrients.

    Tc .. X
     
  13. taniaaust1

    taniaaust1

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    Someone on this thread was earlier asking about how Cheney believed the benzos protected our brain. Anyway.. the answer to that, I just found on another Benzo thread so thought I'd put it here.

    So maybe I have Klonopin to actually thank for my brain coming out of my past severe brain state of where my brain was so bad I had memory issues of even my own family members and what they looked like.. and of simple every day objects.. eg what a toaster was, what a door was and what it was used for? etc . (B12 fixed my memory issues greatly)

    Could I ended up like brain damage if I hadnt started taking Klonopin? I guess we really dont know... my brain was acting very damaged. Has Cheney got patients who improved a lot but were left like actual brain damaged??? I guess he has some reason for making the statements he did.

    The above two cheney quotes I posted before.. got taken from a larger text below.

     
  14. xchocoholic

    xchocoholic Senior Member

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    I'm not aware of cheney or our other traditionally trained cfs specialists, looking for root
    causes in their patients. Does he order stool testing to look for food antibodies, candida,
    bad bacteria, good bacteria, parasites, etc ? Does he do a complete nutritional panel
    on his patients ? Does he use traditional or non traditional tests for Lyme and possible co-factors ?
    Does he test for heavy metals ? Etc etc ..

    If not, then as a totally disabled pwc who's gone through this testing and treatment and had
    positive test results and treatments, I can't understand why I should listen to him .. And yet, I still try to make sense of his logic.

    It seems to me that he's looking at the end product of the root causes and throwing drugs at it. This is how traditional doctors think.

    Why not take the canary out of the coalmine and let it get some fresh air instead of simply trying to revive it in the coalmine ? What would you, Joe patient, do ? Where's the common sense ?

    I was shocked when I learned this. I've only been researching health for 7 years but I find it imposssible to ignore root causes of symptoms.

    Tc .. X
     
    Googsta likes this.
  15. hixxy

    hixxy Woof woof

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    I think the problem with this method isn't that there is a problem with it, but that the pathology is unreliable! We truely don't know what is going on in the gut (and the rest of the body for that matter), regardless of how many poo samples we send in.
     
    taniaaust1 likes this.
  16. xchocoholic

    xchocoholic Senior Member

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    I have to trust the integrative or functional doctors who say we can trust these tests. So far,
    Metametrix has picked up my h pylori and parasites. I treated these and retested and now I only have
    one more type of parasites to treat for. I saw what came out of me while treating so I didn't doubt
    something had died. Lol .. I no longer have my undeniable h pylori symptoms either.

    imho, I find it easy to trust a highly trained doctor who's actually trying to correct the root cause of my me/cfs.
    Afterall, they have the same training as an md + holistic training. And they actually have patients who get
    well. I'm still working on healing but quite frankly, I was a mess. I stayed in the coalmine for
    15 1/2 years after I stopped breathing .. Lol ..

    So why aren't we hearing about these patients ? Why didn't my doctors make a big deal out of me
    walking after 16 1/2 years ? Seriously ? I actually got some rude comments from my mds when I told them how much better I was feeling. Passing the rhomberg after 16 years of failing it, can't be overlooked. Or can it ?

    Could it be that there's too much money in keeping us sick ?

    Tc .. X
     
  17. hixxy

    hixxy Woof woof

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    Or could it be some of us like me that have had 3 Bioscreen stool tests, 4 Metametrix GI Effects tests and a bunch of microbial and parasite tests at conventional labs and treated everything are just still sick?
     
  18. brenda

    brenda Senior Member

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    Secretive doctors put red flags up for me.

    Neilk

    I developed severe mcs when I contracted Lyme and improvement during anti-biotics is classic.

    Even if you have had a negative test, it does not mean unfortunately that you do not have it. A number of doctors say you should go by symptoms.

    I picked it up while I had cfs and got so very much worse.

    Brenda
     
  19. xchocoholic

    xchocoholic Senior Member

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    Sorry to hear this hixxy. So what treatments did you do ? Were you seeing a reliable integrative or functional doctor ? I understand the field is new still but experience seems important.

    I'm a big believer in the paleo / wahls diet. Did you do this ?
    Are you still on it because it takes time. Dr wahls explains all this so I won't even try.

    I'm on keflex (uti - probable small kidney stone that I passed) right now and I have one more parasite to treat but I'm up for it. I've needed azo w probiotics every week or so for the last few years so I'm hoping this will kill off anything that may be causing these. I'm not sure what we're
    going to do about this parasite.

    fwiw, I'm the type of person who loves a challenge tho. The more complicated the better. Granted having my old brain back would help but I'm enjoying trying to solve this puzzle still. Lol .. Tc .. X
     
  20. taniaaust1

    taniaaust1

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    When the "root cause" of ME isnt known, its hard for them to be treating root causes and that is a rather high expectation. Its usually up to science and studies to discover root causes of illnesses and prove root them, not a doctor.

    I think our ME/CFS specialists are currently just doing the best they can as the situation currently is. (There is the added thing of also very possibly loosing their medical licences if they start giving out too much experimental treatments).

    Its the lack of funding for real science... we need to be beating up on.

    Im sure our specialists probably hear of "miracle" stories every day and every person is telling them it was a different thing which helped.

    Without numbers of patients saying exactly the same thing.. this illness is near impossible to sort out.. and real science is the only thing which probably can do.

    It isnt our doctors role to be scientists, their role layes in just trying to treat in the best way they can, while under a heap of medical regulations. I think all ME/CFS specialists are doing quite a hard job.
     

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