hello, anyone Out There match my symptom profile? mine are almost exclusively neurological (apart from fatigue & neck ache): dysarthria (speech), double vision, facial palsy, micrographia (handwriting), tinnitus, plus general problems with balance & co-ordination.
i'm based in england, and my post on eurolyme drew a blank. whilst i wouldn't wish this on anyone, it would be of comfort to know i'm not unique! best, mark
Posted by dmc (Member # 5102) on :
My lyme is primarily neuro. Had so-called optic neuritis, mild bell's palsy, eye floaters, light sensitivity, noise sensitivity, kloonis and exaggerated reflexs, vertigo, and also write & type terribly now.
My first dx was MS, despite the classic neuro lyme symptom of Bell's Palsy.
Posted by alliebridge (Member # 9103) on :
My symptoms are primarily neuro. I too, have neck ache and fatigue(also some shooting pains/aching), but it is about 85% neuro: light and sound sensitivity floaters mild palsy and tremors tinnitis(really bad sometimes!) vision disturbances(seeing outlines around things) viewing patterns(like striped wallpaper, patterned flooring or a website with white lettering and colored background, for examples)make me dizzy hand-writing/typing, coordination problems, etc., etc..
Posted by alliebridge (Member # 9103) on :
Forgot to mention:
memory problems palpitations with shortness of breath and chest pain(almost every night these days)
I'll think of more(maybe!)
Posted by Mathias (Member # 5298) on :
I assume that you haven't been to an LLMD yet and/or been tested for lyme?
Normally without test results, doctors look for two systems to be effected which you appear to have: musculoskeletal (neck ache) and neurological.
Posted by ocdmark (Member # 8884) on :
yes, sorry, i tested +ve for Bb late last year. neurologists here think it's a red herring (they say: neurodegenerative disorder, but can be no more specific and just ran out of things to test me for). i'm having treatment for lyme anyway - had the i/v antibiotics, just finished 3rd of 4 stages of oral antibiotics. but no herx yet, or indeed progress. hence the need for affirmation! best, mark
Posted by seibertneurolyme (Member # 6416) on :
Have you been tested or treated for any coinfections?
Bea Seibert
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by alliebridge: Forgot to mention:
memory problems palpitations with shortness of breath and chest pain(almost every night these days)
Being treated for babs, I hope?
Posted by Lymetoo (Member # 743) on :
Mark!!
My symptoms are more arthritic in nature than CNS...though I have problems there as well. Sorry I can't help. Just stopping by to say welcome!
Posted by ocdmark (Member # 8884) on :
no, haven't been tested/treated for any co-infections yet. the neurologists have been running the show for past 4 years, found nothing and got nowhere. i've since been told that not a single UK neurologist has EVER published anything on lyme!
i read the other thread (thanks!), and was intrigued by the mention of salmonella - i had suspected salmonella in 1996 - couldn't eat for 9 days, lost 22 lbs, not pleasant. anyone know the relevance of this? thanks & best, mark
Posted by Michelle M (Member # 7200) on :
Hi OCD Mark.
I have all neuro lyme. Bad headaches, brain fog, cognitive stuff, palinopsia (visual 'trails'), bilateral forearm nerve damage, fatigue, horrid noise sensitivity, memory of a petunia, etc. In treatment for a year. Just found out I am positive for babesia WA-1 (how do you say DUH???) Hint: Make them test for co-infections, even if you don't seem to have the "classic" symptoms.
Here is a cool page with lots of citations to studies on neuroborreliosis.
Neurologists are typically clueless about Lyme... Wishing you could find a lyme literate doctor on your side of the pond.
Also, treating babesia - if you have it - might make a stunning difference in your progress.
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