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Lyme disease ?

Fiest lyme test was positive so they retested and said negative amd that it must be something autoimmune however 2 ana panels are negative. Another lyme test is negative could i still have it (strange undiagnosed symotoms) story below

So its been a year now, I'm still searching for answers. Please read my question
i started working as a cna ( heavy lifting ) when i woke up one day and my ears started to ring the next couple of weeks i had neck pain my ears were ringing my vision was becoming off and i realized i kept forgetting where i was going. My face would tingle on my nose and mouth it all seemed to be allergy related. (2 weeks before my ears were very itchy) my ears had tons of pressure and it was so annoying. i went to dr and go antibiotics and steroids NOTHING helped. so i had to end up quitting my job, WHEN i quit everything got worse.
When i would lay down my eyes would shake back and fourth. if i would wake up my vision was shaky i had TERRIBLE head pressure that i couldn't even get out of bed. i felt off/drunk like in a dream my legs would kick by themselves as i was falling asleep my legs and hips hurt bad my arms would cramp i had TERRIBLE floaters and i literally couldn't go outside because the light hurt my eyes so bad i couldn't keep them open. my nose would randomly feel like i sucked up water (NETI POT HELPED WITH PRESSURE?) but it was no way sinus pressure. it was debilitating i would try to fall asleep but wake up hallucinating thinking i was at walmart the sound of like motor was in my head so loud i couldn't handle it. i took every allergy pill imaginable.the pressure was so bad i would just fall asleep it didn't matter what i was doing i couldn't even eat. months later the pressure went down. i get lights/ pictures stuck in my head even though I've already looked away. black and white dots in vision, a couple days a month i might be okay but never better, symptoms seem to come and go but when i do a lot my face tingles. i had sever pressure behind eyes and pain in beging to which is gone now, i have many more symptoms. i have absolutely NO short term memory, i can't remember anything from the day before. its scary because i have 2 kids and i just turned 20  drs tested me for lupus..ANA panels. went to three ent one said i needed sinus surgery but probably wasn't causing my symptoms. brain neck spine mri all normal brain mri with contrast normal. ALL blood tests normal. was tested for lyme and RMSV negative i desperately need help and i pray to god its not chairi but deep down i know it probably is.. i went thru my medical records and realized my brain mri said "LOW LYING CEREBALER TONSILS SUGGESTIVE OF ARNOLD CHIARI MALFORMATION" but  2 neurologist and one neurosurgeon said that it was borderline and not really even chiari and cant possibly cause my symptoms. one said my neck lost its curve? or it was straight and also that i had occipital neuralgia what is that?  WHAT IS WRONG WITH ME SOMEONE PLEASE HELP
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Avatar universal
To start with the easy part, occipital neuralgia is generally inflammation in the nerves that run from the top of the spine up to the scalp (the occipital nerves), and what it means is that you have intense pain in your head.  BUT it sounds kind of like none of your doctors really know for sure what's going on.

I would suggest getting a recommendation from ILADS for a Lyme-literate doctor (LLMD), find one you like, and see what they say.  All of the symptoms you reference are on the list of symptoms that could be caused by Lyme.  And there is no absolute test for the Lyme bacteria, although there are far more false negatives than false positives so I'm a little surprised no one seems to be seriously considering that first positive Lyme test.  You might also have one or more co-infections, which multiply the issues.  Find an LLMD who will consider all your symptoms and see what they say.

Best of luck to you, feel better, and let us know your progress.
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Avatar universal
I have all of these symptoms!!! I am also 20! Waiting for the lyme results tomorrow. Please let me know if you found anything. I feel as though I am falling apart.  
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