Possible Lyme without rash?

Posted , 8 users are following.


I've been desperately trying to find out what could be going on with my body for around a year now. I've read a lot of people talk about having non stop muscle twitches all over their body when infected with Lyme or after being treated.

I'm wondering if anyone has had muscle twitching like this before diagnosis and didn't have a rash?

The best way to describe what I've been going through is a cluster of symptoms. The first thing that happened was a pressure in my temple, followed by sudden hearing loss (mild to moderate conductive to be precise) and that's about the time muscle twitches started all over my body. It happens every day anywhere. I have tingling/buzzing behind my left knee and occasional other places in my body like above my lip gets a sharp electric shock from time to time. Started noticing black floaters in vision that appear as streaks. I play ice hockey and almost every game I end up vomiting in the middle of the game. I never had this problem before and have played for years. My lower back has recently started aching as well as around both knees. I get myoclonic jerks sometimes and thumb has been twitching. I've been to a neurologist and got an MRI on my brain and was normal. Also got a bunch of bloodwork done for muscle enzymes, metabolic panel, thyroid, etc and all normal. Doctors say it's stress and anxiety but I'm not convinced. Just seems like my body is slowly under attack or just falling apart. I forgot to mention I also had random jaw pain that lasted for 2 weeks. I could barely chew food. Please any input is appreciated. I'm 26 years old.

0 likes, 8 replies

8 Replies

  • Posted

    I have been experiencing so many of your symptoms and also been searching for a year! Still no answers and Lyme test keeps coming back negative even though idk what else it could be at this point
  • Posted

    Hi Steven,

    I have had a ton of Lyme-like symptoms. I've always gotten negative tests from my regular doctor, but I did get a positive test from a private lab (not sure if I'm supposed to mention specifics. Message me for details on that.)

    Anyway, I've most of the Lyme symptoms you hear about. My muscle twitching came on suddenly and strongly after I had been treating Lyme for about a month or two with a heavy cource of antibiotics. I remember laying in bed and my entire body felt it was twitching all at once. This was around September 2016. Since then, I like you have had twitching / jerks that are random (they appear anywhere...arm, leg, finger, eyelid, chin, butt, neck, etc.) I also noticed I am more shaky than I used to be, and I seem to have an extreme sensitivity to caffeine and alcohol (whereas I barely noticed it before). Magnesium and B12 supplements seem to calm the twitching a bit, but they certainly don't get rid of it. I have it all the time, 24/7.

    Your symptoms sound just like mine. I had extreme jaw pain when this all started too. My ears ring. MRI and blood work all normal.

    • Posted

      Hey Andy & Steven,

      You are not alone here - you have no idea how similar our experiences have been. I've got constant muscle twitching and the occasional tremor/movement in various places. That's come with a variety of other crazy symptoms including rashes, back pain and vertigo, with the most frustrating symptom being leg tightness/cramps. Most of this came after I started using antibiotics in late 2016 and has persisted since.

      MRI/blood work came back normal. Also had some jaw pain for several weeks, and a span of throat soreness/swollen lymph nodes that was so bad it hurt to swallow.

      I'm heading to a neurologist tomorrow and a rheumatologist in the future, and I expect to find little information from them. I'm thinking what we have must either be Lyme, a co-infection of some sort or an autoimmune response to an infection/antibiotics.

      Hope you are both doing well and find some answers. Keep in touch!

  • Posted

    You can definitely have Lyme and not have a rash - even though the bullseye rash is a classic sign of Lyme, there's a good majority of individuals who never have a rash

  • Posted

    Hello guys.

    I have similar symptoms with the ones you described. Started with intense aching and progressed with pins and needles sensation ear beeping sometimes light headed. Also some tooth pain as well. I feared some neurological problem presented but I visited a neurologist and she rulled it out . I insisted in taking an MRI and im doing it today. I also thought of Lyme disease or extensive stress. Let me know if you have any news

  • Posted

    7 months later and I still have many of the symptoms. Keep getting more blood tests that include ANA, Sedimentation rate, thyroid, CBC, metabolic panel, Rocky mountain spotted fever, Lyme(IFA only),etc. All come back normal. I'm getting an endoscopy tomorrow but I doubt anything will show up just like all other tests. 

    I'm going to my doctor in a few weeks to discuss the possibility of Bartonella. I've never put 2 and 2 together but around the time all of my symptoms started appearing my girlfriend brought home a stray kitten from Alabama while visiting her mom. She was quick to take it to the vet and have all its shots but I can't help but think that maybe it scratched me or had a flea or tick on it that was infected with something. I'll post if I find anything out. Oh and a new symptom for me is gradual weight loss for no explainable reason. Still eating normally.

  • Posted

    Dear Steven.

    After visiting a lot of doctors i finally payed a visit in an endocrinologist.

    I summed up my symptoms (close to 40 different) and she insisted looking my thyroid with an ultrasound.

    She saw sign of hasimoto and asked for extra blood test including thyroid antibodies (That one usually is not ordered as a routine test). Note that my tsh and t4 are normal but that alone says nothing.

    Also check the symptoms and see if they sound familliar. In my case it was 90% of them

    Hope i helped

  • Posted

    Hi steven did you find anything that helps ??? we're you taking any kind of medecine around the time these symptoms started showing up ??

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