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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Why not Ketamine?

Discussion in 'General Treatment' started by Mudhole, Apr 30, 2014.

  1. justy

    justy Senior Member

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    Sorry I have to take issue with you here - this is irresponsible nonsense. In the UK Ketamine abuse is widespread as it is so easy to get hold of and cheap. In the area I live in their are many many sad casualties of Ketamine abuse - especially amongst the very young and lots of girls affected.

    Many youngsters are having to have their bladders removed and bags permanently attached - I have met a few such cases - all under 25. A girl my son went to school with (he's 22) died last month - she was only taking Ketamine.

    http://drugabuse.com/library/the-effects-of-ketamine-use/


    http://www.talktofrank.com/drug/ketamine

    http://www.talktofrank.com/drug/ketamine

    To be clear I am talking about abuse of Ketamine, not when it is used as a prescribed drug, however I have seen enough of the fall out from abuse that I would not go near it.

    • .
    • Some users have been known to take higher doses as a way to control the bladder pain caused by ketamine, which in turn increases the risk of bladder damage and pain.
    • Abdominal pain or ‘K cramps’ have been reported by many long-term users.
    • Evidence of liver damage due to regular, heavy ketamine use is emerging. The liver has a range of important functions, such as cleaning your blood and removing toxic substances.
    vli, Valentijn and peggy-sue like this.
  2. peggy-sue

    peggy-sue

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    In the mid-'90s, ketamine was being seriously considered for use as a model for schizoprenia, based on the idea that the hallucinatory effects do not occur in pre-adolesence, and that schizophrenia does not manifest until after puberty.

    (Although I have recently noticed in the literature references to childhood schizophrenia, I really don't know if it has been found, or if it's more psychologisation by the psych lot in the DSM, in order to pep up their patient base.)

    Drugs are biologically active substances. When a drug is found, it can take a very long time to find out exactly what it can do - and the results can often be very diverse and surprising and completely unrelated to the original "intent".
    justy likes this.
  3. Mudhole

    Mudhole

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    Justy-

    I am aware of the ongoing sensationalist propaganda campaign against Ketamine in the UK popular press. We have propaganda campaigns here too. To wit:

    THOSE EVIL RUSSIANS
    THOSE EVIL TERRORISTS
    OUR BRAVE TROOPS
    OUR UNIFORMED HEROES

    24/7 365.

    Reality is somewhat different, as is the reality of Ketamine. While 15,000 people in the US die of prescription painkillers every year, the number of deaths from Ketamine is so low it is not even recorded. Ketamine related deaths are a MINISCULE FRACTION of the number of people killed by golf clubs and garage door openers.
    vli and john66 like this.
  4. acrosstheveil

    acrosstheveil Senior Member

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    ime, low dose ketamine helps a ton for all sorts of chronic pain, illnesses, and sleep problems. unfortunately i did not do this legally and it can become addictive very quickly.
    peggy-sue likes this.
  5. Fogbuster

    Fogbuster Senior Member

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    Read studies, then make a judgment. Simples. I'm in agreement with your views @Mudhole. In a controlled environment this drug could help ALOT of people.
    peggy-sue likes this.
  6. justy

    justy Senior Member

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    I am not interested in the popular press in the least bit, nor do I need to be spoken to as if I were an idiot. I was speaking, if you read my post from personal experiences - Ketamine is ruining the lives of many young people in the rural community I live in. Girls under 25 are having their bladder removed from ketamine abuse.
    Valentijn likes this.
  7. Kina

    Kina Moderation Team Lead

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    I wonder what the 'reality of ketamine' actually is. It is an anesthetic and in those terms would have a high safety profile because during surgery somebody is monitoring you for side-effects -- heart rate, BP, respirations. I would also assume that those who have been prescribed ketamine are using it under controlled circumstances which would decrease any deaths from adverse effects. It also hasn't been widely prescribed except for use in surgery -- has it?

    I think @justy is making a very good point because this drug is being abused by people and causing death.

    For me, I would like to see much more research and secondly would it be of any use to people with ME/CFS or would it cause them more problems as ketamine is known to cause alterations in BP, fainting, arrhythmia's which would cause massive problems for all of us.
    Valentijn and peggy-sue like this.
  8. voner

    voner Senior Member

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    The use of ketamine is highly controversial because of the abuse/addiction issues that has been discussed. It is used by some pain doctors. If you explore forms of with patients with complex regional pain syndrome you will see the Subject is discussed quite a bit. Here is a pain Dr. site who hasinformation about it. He also uses low dose Naltrexone. There are a few doctors out there that will use ketamine for pain. But just a few because of the high abuse potential etc.

    http://painsandiego.com/2012/01/24/depression-ptsd-ketamine-rapid-treatment/
    http://painsandiego.com/2014/04/16/...ession-the-first-randomized-controlled-trial/
  9. acrosstheveil

    acrosstheveil Senior Member

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    i think it might be okay if you had a controlled form of dosing where you take the same dose every time. it still should be a last resort option imo.
  10. minkeygirl

    minkeygirl Senior Member

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  11. peggy-sue

    peggy-sue

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    Fascinating :thumbsup:

    - but they're still on about serotonin.:rolleyes:
    It's HORMONES that mediate mood. Not neurotransmitters.:(
  12. Mudhole

    Mudhole

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    Justy-

    Sorry if I offended you. I was not trying to defend recreational use of ketamine or any other drug. My own recreational drug use is confined to an occasional glass of red wine. I have never tried Ketamine, nor would I do so outside a clinical setting. My whole point is, Ketamine is a potentially promising treatment for us that is not being explored because of the bad name it has acquired due to widespread recreational abuse.

    Unfortunately, CFS/ME falls into a medical Twilight Zone between infectious disease, neurology and psychiatry.
    Here in this nexus to nowhere there are no roads, no maps, no stars and not much hope. There was a man, Dr. Jay Goldstein who helped a lot of people until ill health forced him to retire a dozen years ago. Dr. Goldstein stated that Ketamine was the best treatment for CFS/ME. The BEST treatment, and yet no one is offering it? Instead, it's pick your hyper-expensive poison- Ampligen, Valcyte, Rituxan, Enbrel, etc. These treatment paths are extremely profitable for some, but little help for all but a few.

    What if, Justy, WHAT IF ketamine works for us like it works for MDD and PTSD, what if it is the best treatment for us, or at least, some of us? Why not TRY IT ? Yet, no one is.
    justy and Fogbuster like this.
  13. Kina

    Kina Moderation Team Lead

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    @Mudhole

    It seems to me that you are conflating MDD and PTSD with ME/CFS -- Why?
    Valentijn likes this.
  14. searcher

    searcher

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    I am with Mudhole on this even though I know it's controversial-- ketamine is scary when abused recreationally but there is evidence that it has promising benefits when used in clinical settings. Jay Goldstein found that it helped his ME/CFS patients. Although ME/CFS is very different than MDD and PTSD we also have issues with GABA and glutamate which ketamine seems to affect. It's possible ketamine won't help or could even be detrimental but we won't know until clinicians and researchers test it.
    Last edited: May 3, 2014
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  15. Mudhole

    Mudhole

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    Kina-

    I wouldn't go as far as conflating, but there are definite parallels. I get depressed when I look out the window and see the three kayaks I will probably never paddle again. Thinking about the dive trip to Indonesia I had to cancel when I was stuck down on Dec. 29th of last year depresses me. Knowing I'll probably never work again depresses the hell out of me. SSRIs don't work for me. I f Ketamine can help me with my depression, I would be very grateful.

    What PTSD and CFS/ME have in common IMHO, is damaged brain synapses from stress overload. Ketamine repairs these synapses. No, I do not have any medical training, nor am I a scientist of any sort. I don't know if Ketamine would work for us, or the degree of efficacy. What I am confident of - that there are no significant medical or ethical issues here. It's been tried before and it worked. Pourquoi pas?
  16. xrayspex

    xrayspex Senior Member

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    @Mudhole, curious why you include valcyte as poison med----i dont nec. disagree, am curious because get bad pain every time i take even just half a tablet for a day......

    all the rest, too tired to figure out and comment but i keep an open mind but i also have had bad luck with chemicals myself due to mcs
  17. Kina

    Kina Moderation Team Lead

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    Ketamine will not stop you from grieving over your losses. From what I have just read, it might just work as a temporary effect so would be helpful in patients that are suicidal.

    From -- http://neurocritic.blogspot.co.uk/2010/08/ketamine-for-depression-yay-or-neigh.html
    Other interesting articles
    http://neuroskeptic.blogspot.co.uk/2012/03/ketamine-magic-antidepressant-or.html

    http://cellularscale.blogspot.co.uk/2012/11/ketamine-for-depression-via-neurogenesis.html

    http://www.theguardian.com/science/blog/2010/sep/01/psychedelic-drugs-mental-illness

    What about those people with ME who led relatively stress-free happy lives? The synapse studies come from rats and it's beyond me how you give a rat PTSD and then associate improved synaptic function in rats with human psychiatric conditions. What are the ramifications of messing with the synapses?

    One study showed that ketamine causes cancer -- that's a pretty serious medical issue to consider. There are ethical issues here too re: a doctor prescribing a drug for depression that hasn't been properly studied and that may cause further medical issues. This is a problem with most pharmaceuticals out there today. Why does Ketamine get a pass on your list of dangerous poisons?
    Valentijn likes this.
  18. Mudhole

    Mudhole

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    Kina- my argument, in brief:

    Ketamine has been around for decades. It's FDA approved, and is one of the most thoroughly studied drugs on the market. It is also been tested informally, tens of millions of times by young boneheads everywhere. This may be 'anecdotal' evidence to the Sheldon Coopers of this world, but the numbers are overwhelming and the results are undeniable- Ketamine is one of the least toxic drugs on the planet.

    As for how the human brain works- nobody knows. Neurophamacology is still in the 'cut and try' stage. Meanwhile CFS/ME victims watch,and wait- and grow older and sicker, and die. Yet there is a potential treatment, one that worked before, that takes effect immediately, is non toxic, that everyone can afford, is FHA approved- why not TRY it at least?

    If a doctor would agree to prescribe Ketamine to me, and infuse me Monday morning, the entire CFS/ME world would know, starting Tuesday morning, how I was doing, if I thought Ketamine was helping me, any negative effects.

    Why not try?
  19. peggy-sue

    peggy-sue

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    I have a personal blanket ban on infusions - or, indeed on anything involving needles.
    I would not be able to cope with diabetes. I'd have to do away with myself.
  20. Mudhole

    Mudhole

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    Come on, Kid- It's easy! Just close your eyes, lie back and think of England.

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