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9 thoughts on “Members

  1. Moderator,
    I would like to request Lily’s email address. Lily responded to my resent comment and she said that she would send me articles that she has pertaining to xeomin.
    Thank you,
    Katie

  2. I also had DYSPORT and i’m almost 4 years post injection and still not well. I would like to talk to you. Before the Dysport I had botox many times for many years with absolutely NO problems, but Dysport damned near killed me. Here I am almost 4 years later still feeling awful. Please consider calling me. My number is 484-515-8148 and I have also started a support group specifically for Dysport sufferers on FB called Dysport Sufferers Support Group please feel free to join. I hope to hear from you soon! Melissa Jacobs

  3. For Anne88,
    I also had DYSPORT and i’m almost 4 years post injection and still not well. I would like to talk to you. Before the Dysport I had botox many times for many years with absolutely NO problems, but Dysport damned near killed me. Here I am almost 4 years later still feeling awful. Please consider calling me. My number is 484-515-8148 and I have also started a support group specifically for Dysport sufferers on FB called Dysport Sufferers Support Group please feel free to join. This is a terrible and lonely journey. I hope to hear from you soon! Melissa Jacobs

    1. hi missie i looked for your group and couldnt find it.. could you give a link? im sorry you have had to go through this. its terrible. when people ask me anything about my health i tell them i was poisoned (which we were). i have heard your experience many times about dysport vs botox……. also the other ‘off’ brands xeomin etc seem far less tested and seem to cause far worse side effects much more often. fortunately at 2.5 years im having a lot of improvmement. fingers are crossed for us all. please share your link i could not find your group. take care.

  4. Not sure how to send a link to it but if you type in DYSPORT sufferers support group it should pop up, DYSPORT in all caps. Do your ears still ring with a clogged feeling? Is your scalp still numb / tingly? My memory is awful. My arms and legs, hands and feet are still numb with stinging feeling and shooting pains all over my body also the left side of my face still hasn’t regained all of its feeling, the list is endless. I have more energy though but still brain fogged all the time. I got 60 units in the forehead, reaction came onto me like a ton of bricks 8 days later. I just want to know what happened (is happening) to us. Can’t get real answers because it seems like doctors will defend this product until the end of the earth and try to make us feel like mental patients when we present our issues. I was only taken seriously by 2 doctors since the injection. I was hospitalized 2 months after the injection because I was in such bad shape, to weak to even speak most of the time, not to mention that I lost my voice on and off for the first year which made it hard to communicate. I wonder now what the risks of using botox are seeing how I had the terrible reaction to dysport but never botox. Just too scared to find out. Breathing and swallowing are still issues as well. It’s just been a nightmare! Almost 4 years later!!!! I have terrible painful eye problems and still have some speech problems. Always kind of feel drugged if that makes any sense. I really just want to know why this happened and exactly what happened. I want answers :(

    1. hi missie i have a lot of the same issues. many have reduced over time. i am starting a very very focused year long detox program that i am a couple of months into and i believe it has helped. i have had to be very very cautious and if i overdo anything i will get that weird ringing in the head and body aches. if i back off, drink a lot of water and rest, this improves. my legs and arms fall ‘asleep’ very easily but they are not weak anymore and can tolerate normal exercise as long as i move slowly. any sudden or jerky movements especially of the neck will bring on symptoms.

      as far as what happened it is really very simple (unfortunately) which is why it is really kind of laughable that doctors dont get it. awhile back i posted some articles my bf wrote about acetylcholine.. (“Open letter the group from anne’s bf” part 1, 2, and 3) there are many other good posts written about this topic too by other members. as im sure you know botulinum is a neurotoxin (the most potent one known to man) which works by disrupting cellular function and communication on a mass scale. it does this by blocking the transmission/utilization of acetylcholine the most prevalent neurotransmitter in the body. acetylcholine is responsible for many basic bodily functions and when it is disrupted it can rapidly lead to death.

      for instance, king cobra venom also blocks acetylcholine, this is why snake bite victims hearts rapidly stop beating and why they stop breathing. black widow spiders also disrupt acetylcholine, causeing an excess instead which is just as deadly. this causes muslces to -over- contract, and also can rapidly lead to inability to breathe and death. nerve gas also works by causing an excess of acetylcholine. there is a reason many neurotoxins in the natural world target acetylcholine and this is becuase it is basic to the life processes. disrupting it will rapidly and effectively disable and possibly kill your target … by rendering then unable to breathe and their hearts unable to beat.

      when people use ‘botox’ there is a myth that it will stay within the targeted muscles, causing their paralysis, and not move into any other parts of they body. sometimes, this appears to be true. however even when this appears to be true, there is no proof that it -is- true. however in other cases the toxin spreads through the body. brain, muscles, central nervous system, spinal cord, digestive system, vascular system, the body is packed with acetylcholine receptors and the toxin permanently destroys them on contact. just like beign exposed to nerve gas, or bittten by a king cobra, or a black widow spider, the body has immediate and catstrophic reactions due to basic disruption of life processes on a basic level.

      snake and spider bites (and nerve gas exposure) as well as other causes of disruption of acetylcholine is well known to doctors to cause massive and catastrophic full body reactions in the victim that can sometimes be quickly fatal. these reactions can be extremely difficiult to predict, control, or treat (without antivenom) becuase of this. we are having the exact same kind of reaction. its a catastrophic disruption of our most basic bodily processes on a system wide level. even under the best of circumstances it would be difficuilit to treat.

      however the fact that drs are unable to put this together is a laughable joke as symptoms of antichiolinergic poisoning through these other factors are well known to medicine.

      since all doctors are complete incompetent idiots we have to just manage these catastrophic system wide effects the best we can.. trying to help the body restabilize, heal, and clear itself of the remaining toxins. the body can do this but of course it is complicated difficult and takes time… and there are a LOT of unknowns. but it can be done.

      the body will restabilize we just have to figure out the ways that will help it as much as possible and do those things. and figure out the things that make it worse and avoid those things as much as possible. the body will restabilize all we can do it try to help it as much as we can.

      anyway there is lots of information here about these thigns by many different members. i tried to find your fb group but it would not come up even as you spelled it. im not sure what the problem was i was able to get to your personal page… hope to talk to you more soon and that you start having lots more improvemetns really soon :}}

    2. missie: a search on fb did not turn up your group but it did turn up your story on real self. i am SO sorry for what you have been through.

      do you have any idea at this point about what has helped and what has made things worse? id be interested to know what you have tried that has helped.

      this stuff is a greater scandal than heroin or crack.. the peopel who push this stuff are just as bad. every one of them should be in jail. glad you are here its a really good group. i really do hope you are able to clear up the last of your problems very soon there is a lot of good information and support here.

  5. Type in FB exactly like this DYSPORT Sufferers Support Group (let me know if it comes up that way :) also you can connect with me at http://www.facebook.com/missiejacobs I hope that we can be a source of support for each other and help new sufferers understand what is happening to them and help them know that even though they feel like death that they will survive :)

  6. Found that ANY type of “treatment” for the reaction to dysport made EVERYTHING elevate so I think the best thing to do is just let the body try to fight it off. I had every symptom on the pamphlet for adverse reaction plus MANY more symptoms that were not listed, I also experienced EVERY symptom listed under the spreading of the toxin list plus MANY more that were not listed. I really believe that during the first year I was in the dying process, I don’t know how I survived other than sheer will to live, the second hear was touch and go and I still felt like I was going to experience sudden death every single day, now heading into the 4th year post injection I still do feel unstable but I think I am going to survive at this point although I do believe that in the long run that this whole ordeal will contribute to an early death on my part. I have become overly sensitive to things that I had never had a problem with, even taking vitamins elevated the symptoms. I think it’s just best to let the body do it’s thing and hope for the best :) I’d really like to talk to you Anne88, please consider contacting me :) Missie (that’s my real name)

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