Hello,
I’m young, I’m 18 years old but I suffer from a terrible neurolyme.
I’ve been diagnosed with lyme disease in october 2016 after having trouble swallowing.
5 months later, I have terrible neuralgias including glossopharyngeal neuralgia, but also cranial neuralgia.
It’s extremely painful, like a blade piercing my throat when I swallow or when I speak. I feel like my throat is burning with acid and all my head is so painful when I touch it. I can’t describe it. It’s like having razor blades that go up and down my throat, my head, my neck, even my ears sometimes.
I’m on IV Ceftriaxone, Zeclar and Plaquenil but it doesn’t work. I don’t eat gluten, diary and sugar.
It’s impossible to live with that kind of symptoms trust me, I’m bedridden all day because the pain is so intense that I fall into apples.
Anyone have also a neurolyme ?
What can I do please, I’m desperate.
IV Ceftriaxone and Zeclar both are known to cause your issues. Zeclar is rarely if ever used in a number of countries because of the cardiac effects, and in fact carries a black box warning because of the side effects. It was supposed to be a form of erythromyacin which has no effect on Lyme. Of particular concern concern is that in studies of IV Ceftriaxone approximately one in five patients enrolled had adverse effects that resulted hospitalization. I have no CLUE why they would use an anti malarial drug (Plaquenil) that is also a immunosuppresent medication. I think I’d be looking for another opinion ASAP.
http://www.columbia-lyme.org/patients/ld_treatment.html
TJ
Ok so you think my symptoms are caused by the IV Ceftriaxone and the Zeclar (Herx Reaction ?) and not lyme and the coinfections themselves ?
Because I never had this kind of pain before treatment in 12 years of Lyme (I got no treatment for 12 years)
May I stop the treatment ?
So sorry-so young- so ill. I hope you are getting family and GP support etc-Afraid Lyme has caused me a great deal of arthritis -had neuro symptoms but no way as bad as you are having. It really is a terrible disease. Have you been on EuroLyme group-very informative. Gill who set it up was a radiologist studying cancer -has been very ill -done a lot of research and is now relatively ‘cured’ but has occasional relapses.,
Take care-thinking of you, Jacqui
Fabricesteak. You went without treatment for 12 years, you are 18 now? Are you saying that you got Lyme when you were six years old? Tell us more about your journey with Lyme: I have a feeling that there’s an interesting story in there!
Best wishes from Seenie from Moderator Support