Indiana Online Lyme Support

Tri-State Lyme Disease Support Group (Kentucky, Indiana, Illinois)

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  1. Rod(ney) Jones said

    I am reasonably certain I have chronic lyme disease. Was tested positive about eight years ago and took antibotics for a month. About February head pain had become too much and a ct scan was ordered and all the ventricles were swollen. An MRI was ordered to confirm and to look for any blockage. None was found. Extensive test was run on the spinal fluid, no cancer and no results abnormal. Currently on 100mg of Topiramate and 50 mg of Nortriptyline to keep the production of fluid down to keep the pressure down even though the ventricles are permanently swollen. This seems to be reasonably successful as the majority of the pain is gone most of the time. The eyes give me the most discomfort. The Neurologist said the ventricles are about five times their normal size permanently. Last month the usual doctor I see at the VA said he thinks I have Fibromialgia based things I had explained. My shoulders and hips have made sleeping very difficult. I am in need of somebody’s understanding to some degree. I was going to seek a second opinion of a neurosurgeon but thankfully the medication has had some success. Any information and help would be greatly appreciated. Many thanks, Rod Jones

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