View Full Version : Docs are shrugging

11-24-2016, 03:50 PM
Hi, my name is Ashling, 36, f, living in central Florida

I'll try to keep this short but it's a long winding story and I'll try to break it up a lot to be easier to read. I'm hoping someone can tell me if it's worth my time looking for an LLMD.

Before this year, I was very athletic and very active. However in February I started getting sharp pains in my legs and then developed shin splints and tibialis posterior tendonitis with swelling in my left ankle. A couple weeks later I was having similar pains in my right ankle without the swelling. Which one hurt more in what way bounced back and forth. I had also noticed stiff fingers around this time but thought it was just from aging.

In March I started getting what I thought was plantar fasciitis. Again this switched feet but ultimately between the tendonitis and foot pain I ended up on crutches through half of May. I saw an orthopedist in April who confirmed the swollen tendon was tendonitis.

In June I started getting the same tendonitis feeling in my forearms just below the elbow. It too switched arms. All my limbs started to ache, my sleep became poor and my left arm was sore from shoulder to fingertips. I started to get tingling first in my feet then a few days later in my forearms and hands. Something in my left bicep and tricep started to hurt like tendonitis.

By July my neck was extremely stiff and popping and cracking a lot. My left arm was entirely tingly (running through the "tendonitis" feeling areas). I saw my GP who send me back to my orthopedist.

In August I saw the ortho and he said I now had arthralgia in my ankle and the spread of the tingling meant I needed to see a neurologist. During the rest of august (neuro appointment was 20 Sept)., the tingling in my arm I think met up with some in the top of my shoulder. I got this drawing/pulling feeling on the left side of my face but I willed it to stop and it turned into tingling in my face that converged with the tingling in my shoulder/left arm. From there it started to go down under my collar bone a little ways. I started having panic attacks and crying jags (which I never have had before in my life). I started getting night sweats and muscle twitches all over.

By September I was convinced I was dying. I couldn't tell if I was hot or cold at night, but often felt feverish. The tingling moved down my left leg. I started to get dry heaves a lot and I became thirsty 100% of the time. I saw the neurologist and he wanted to test me for MS (but at the time thought I'd have no insurance until January). He prescribed me B12 injections and those did make me feel better (less disorientated and I quit napping in the afternoons).

In October I kept feeling sicker. The tendons on the outside of my knees started to hurt. My heart started racing very fast for no reason and this weird feeling of cranial pressure started. I suddenly got a lot more floaters in my vision (I've always had them but not so much they were annoying). My sleepless nights became the rule. My legs would ache terribly and I would pace for hours on end. Towards the end of the month my stomach got to bothering me so much I couldn't eat anything but tomatoes and cucumbers. On Halloween, my boyfriend and I married and I got insurance.

My neuro had me tested for lyme (IgG and IgM) and babesia through Quest and they came up negative. He actually wanted to hold off on the MRI until the lyme tests came back, which we thought was weird. On veterans day I had to go to the ER for the racing heart and there the doctor guessed something toxicological. Now the neuro doesn't seem to want an MRI and said to go to Mayo.

Saw my GP yesterday and by then I'd developed some pain in my lower right side around the belt line. They did an ultrasound and didn't find anything (no real surprise to me at this point). He also wants me to go to Shands or Mayo. No one is saying why now they think it isn't MS or what they think it might be. So far my thyroid, liver, and kidney function tests have come back normal and my magnesium levels are fine (yet I still twitch a lot, especially my fingers). Now I've started getting sharp pains in the back of my neck and it feels like my head is full of cotton wool.

Wondering if someone here could advise me: should I request an LLMD in my area? Does any of this sound like Lyme?

PS I was bitten by a mystery insect sometime last year that made a great big pink circle. There were two bite marks so at the time I supposed it was a spider and forgot about it. (Turns out according to the internet, it would had to have been a tarantula to leave two distinct marks and so was probably a blood sucking critter that bit twice).

Thank you for reading and any help much appreciated,


08-07-2017, 02:45 PM
Hi Ashling!

I don't know a lot but from being a nurse and from the little I've learned from having Lyme symptoms as well, I think you should look into finding a Lyme literate MD. Your symptoms do sound like they could be caused by Lyme.

I realize your post is from late last year. I hope you got treatment and are better.


07-22-2018, 08:22 PM
What's happened since your last post? I'd love to hear more about your story. I'm writing about lyme literate and non-literate MD's and it sounds like maybe you (and your responder) have some experiences. Interested in sharing?