Doctors can't find out what I have? Lymes disease?

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I've been having these weird symptoms since July and they just keep getting worse and worse and no one can find out what it is. I've been to the ER a whole bunch of times, my primary doctor, a neurologist, and recently an ENT. I'm just going to make a list of all of my symptoms in order and if anyone has any idea what this could be or has felt any of this stuff please let me know. I'm going to start with my very first symptom. 

- tingling all over body, shortness of breath, chest burning and itching (diagnosed a couple of times as heartburn and GERD) 

- nonstop chest pain (this is still going on) 

- burning in throat (heartburn)

- loud crackling and gurgling noises coming from my throat (this is still happening and no one knows what it is but it is ANNOYING) 

- loud crackling/fizzling/grinding noises in my neck (has progressively gotten worse and worse to the point where the noises keep me up at night)

- (MY ABSOLUTE FAVORITE ONE) feeling like there's water dripping inside of me. first it started in my stomach during the summer and then it moved on to my legs and my head. this one keeps getting worse. now it's like I feel burning liquid crackling in random parts of my body out of nowhere. no one knows what this is either but it's driving me crazy and i honestly don't know how i've made it the past 4 months feeling this all the time. especially when i feel the burning in my head. 

- Difficulty swallowing, feeling bloated, lost 10 pounds in one month bc i could barely eat

- feeling vibrating in my chest/legs???

- extreme weakness/heaviness in my legs & body, could barely walk, lightheaded/faint

- tingling in feet and hands (one time my hand was shaking and I felt the burning hot liquid inside of it, it was red & i got scared & went to the ER but they found nothing. yay.

- twiching literally all over my body. right now it's mostly my eye but at one point my face wouldn't stop throbbing & i always have random twithcing in different types of my body.

- stabbing pains my head stomach and chest

- problems with my vision, this started last month, i constantly see stars, sometimes there's a black dot moving across my vision and a lot of purple floaters???

- tightness in my hands and legs/ swelling (or tenderness) in my arms and legs

- clicking when i blink my eyes, loud rubbing noises in my ears along with crackling and hearing something rubbing. 

- feeling air rush out of my ears when i talk or just out of nowhere 

- feeling my bones or muscles rubbing in my wrists and my legs. it's a really weird feeling i don't know how to describe but it sucks. 

- around august one time my face went numb and so did my lips along with tightness in my forehead and the back of my head (doctors found nothing)

I think that's mostly everything. So I've had a lot of chest x rays done (normal), wore a heart moniter once, a whole bunch of CBC blood tests done at the ER, thyroid blood test, I got an EMG done (which afterwards I felt like I was gonna die, I was really faint and felt like my head got hit by a brick and could barely walk), brain MRI (2 lesions came up but they said it was inconclusive), i got a spinal tap done last month (which came back normal. i actually wanted it to come back not normal so that i could treat whatever the heck is happening to me), yesterday I got a thryoid ultrasound done b/c the ENT refferred me. They did a hearing test and said I had negative pressure in my ears but apparently that means nothing. 

At first I was freaking out bc i thought I had MS but then I started looking up Lymes disease, doing a lot of research on it, and i 100% thought i had it bc all the symptoms are the ones I have, but the spinal tap came back normal and i don't know what to do anymore. I keep getting worse and worse and no one can diagnose me. If anyone has any input at all I would appreciate it. Can you have lymes disease and have it not show up on a spinal tap??? i really dont know what else this could be. 

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  • Posted

    Have you considered a functional neurologist? Possible side effects from wheat, gluten, rice, beer, yeast,or dairy products? I had a whole lot of mystery weirdness until I found this out... so you have any autoimmune issues? Body inflammation? ANA markers in blood test?
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    • Posted

      I got reffered to another neurologist since the other one gave up on me but I? not sure if its a funcitonal neurologist....would that be better?? Ive never been allergic to any foods though. & yeah i dont even have any medical history other than all of the stuff i listed up there. this all started out of nowhere for me during the summer. & i? 18 

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  • Posted

    I
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  • Posted

     Wow reading your post here I have a lot of the same symptoms you do I gave up on doctors ...  but I think I'm gonna get tested for meningitis that's what I thought it might be ...  if you find out please let me know here because I don't have so many of your symptoms and going to doctors constantly I'm not finding out anything about this .. good luck to you and God bless you 

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    • Posted

      I? so close to giving up on doctors too. Ive given up on hospitals. I? been going to a lot of doctors too, its crazy im only 18 and now i have a whole bunch of medical bills, all for nothing, bc I still dont know what i have. I thought about meningitis before but I? pretty sure that would show up on a spinal tap so I guess I dont have that. ill let you know if I find anything out tho & if u find anything out let me know too!

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  • Posted

    Yikes your body is attacking it's self like lupus does, but that seems to pick a certain organ part only, yours is like everything 

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  • Posted

    hi, ive had everyone of these symptoms getting worse over a 3 year period. i tested possitive with a lymes disease co infection after 3 negative lymes test. it realy sounds like lymes. but could also be a number of other conditions i have had countless test and conditions suspected so i would also get your doctor to test for these- ceoliac ( have the biopsy too not just the blood test ) nerve conduction test, autoimmune screening,autonomic neuropathy testing,test for toxic mold syndrome and candidia overgrowth. i always had high ESR levels showing inflamation and high IgE levels showing immune response. i have suffered for a long time and doctors kept saying they couldnt find anything wrong almost hd me thinking it was all in my mind - dont give up something is causing this and they have found brain lessions they cant just ignore that- good luck
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    • Posted

      How did you get tested for lymes? because all I got done was a spinal tap. (& honestly id rather die than do that again). is there any other way to test for it? i wish lymes wasnt so hard to diagnose....ugh. ill ask my doctor about all of those though, and i know what ur saying, there were doctors telling me this was all hallucinations and that all this was anxiety!!! it made me so angry. but thanks for the comment and ill definitely ask my doctor about all that. 

      if you dont mind me asking, how did they finally diagnose it? and how do you treat it? have you gotten better at all? 

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    • Posted

      hi i was tested for lymes by blood test if your in the US its got a good blood test rate alot more sensitive than UK and there seems to be alot of good lymes specialist ask your doctor who should be able to send the blood for testing. ive not had any real treatment other than 2 weeks doxycycline but im going to infectious diseases tomorow hopfully they will start more  
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  • Posted

    I hope they found out soon. what a miserable thing for you to be going through!! I have celiac disease, and although some of your symptoms sound similar they are also very differnt in some ways. I also had H-pylori, it caused all kinds of stomach yuck, have you had both of these checked?  Is certianly sound autoimmunish.  

    Hang in there and keep hounding them till they figure it out!

    No dissing your illness, it sounds terribly painful and I am very sorry you have it, but the way you describe it,  I felt like I was reading a Stven King novel! dreadful!

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    • Posted

      It feels like a stephen king novel!!! i really dont know how ive made it through the past 4 months like this. I dont think ive gotten checked for h-pylori but ill ask my doctor about it, and ill look up celiac disease. i wanna find out what this is already bc i cant anymore. i had to put off college for this sad i got referred to a rheumatologist but havent made an appt yet so ill prob do that soon so they can check for autoimmune diseases. Thanks for this comment by the way, at least someones taking me seriously lol. 

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    • Posted

      i was sick with CD my whole life and was told I was lazy and not trying. My home life was incredibly hard.  I was never heard or beleived for anything.  I beleive everyone until they prove me wrong.  I take people seriously and I give what I needed my whole life, and I am truly sorry you are going through this, i feel it deeply, it pains me when people are treated badly.  I will keep you  in my thoughts. HUgz
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  • Posted

    You are the first person to mention a "wind-like" effect in the ears. Almost every day, I get a pressure in my ears...that sounds like the wind going through my ears especially when I exhale. Noone seems to know what I am talking about. Hearing and ear pressure tested ok. Like you, my legs are weak and heavy feeling, and I can barely walk. Legs and hands feel stiff, too. I also get twitching on my face and under my eye. Got floaters, watery and blurry eye. My SED rate has been elevated...and I have been through enough testing to perplex all the doctors. Had the spinal tap for MS and Lyme, too...and all negative. Did have a "few foci of hyperintensities" in white matter on MRI...but no one seems concerned about it. So, my diagnosis has settled on Atypical Parkinsonism. However, I'm not totally suresmile I haven't been too happy with the medical community...too busy and seemingly uncaring. They want to push the drugs, and less interested in the root cause. Hope you find an answer!!

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    • Posted

      Wow, you literally have all of my symptoms. Are we twins? & thats what they found on my MRI too!! And yeah true, doctors have sucked so much for me, they just say im having änxiety but dont actually bother to check the root cause of whats going on with me...so annoying. they really dont seem to care. the wind whooshing out of the ears feeling really sucks too. Thanks though!

      & how did you get diagnosed with atypical parkinsonism???

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    • Posted

      I don't have the typical tremors...and the walking issues have been the worst (with a fast progression). And they have ruled out other stuff with all that testing. I am certain  that the 'ear thing" has something to do with balance issues...as well as something going on with the hyperintensities on the MRI. I have a  watery eye and nose, so think there is a chronic inflammation going on in the brain (SED rate elevates, too). Like I said, they just want to give meds for Parkinsons instead of getting to the root cause. PD meds can create a whole new myriad of adverse effects of their own. How is the coordination of your hands and fingers?

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