Could this be Lyme???

[Katya4]

I am 21, female. I have had strange symptoms start several moths ago, early December. I am wondering about Lyme.

I have for months been experiencing different parts of my body to have bad symptoms for 3 weeks or so at a time, sometimes at the same time. During an 'episode' they will be much worse. I will get numbness, tingling, burning, feeling of being stung by thousands of bees, and sensation of vibrating in legs. Also weakness. I am a gymnast, and it is ruining my practice. My balance is off, sometimes I become dizzy. I drop things a lot, hard to type (thank god for spell check) its like my hands are discooridinated, and impossible to write.

What throws it off is that I am a gymnast and present well, but not from a gymnastics perspective, in gym I am failing.

Problems seem to get worse or be brought on by heat. I am very intolerant to heat, working out and getting hot causes problems, so does high ambient temperature. I can not sleep at night already because no AC and I end up with the weird symptoms keeping me awake. I am most comfortable at about 55F for sleeping temps. here now it is 78 and its a killer!!! No problems with even most extreme cold though.

I have had MRI of brain and C spine with and without contrast, came back insignificant. Had one EMG but too late to catch symptoms, never get the emg for about 2 months. B12 is perfect, and so was thyroid.

Saw a neurologist today, after 6 month wait, but he said he is stumped because I don't have any lesions or abnormalities. He said I don't fit any physical or psychological diagnosis and his advice was "Just try to ignore it I guess." I was not impressed, especially after waiting 6 months and the guy to never even crack open my file.
To me it is very serious, it is ruining my gymnastics practice and aspiring career as an aerialist.


Boy, long post, tried to include detail without making it confusing.


What ever it may be. I am hoping to get some advice here on what to do, where to go? Any tests I should ask for?

Any feedback is appreciated, and thank you for reading my long article here..

[Katya4]

I just got an email from ILADS this evening, over a week from filling out the paper online. There is ONE Lyme doc in my state, so I will call in the morning. But I found one. Also a lyme group, but I think it is very very faraway.

I was really starting to worry , I'm glad I got a response.

[JackieCalifornia]

Another oops, I just now saw your post about looking for a doc -- so that's a good start you've already begun.  Local connections are valuable because it will find you potential docs you can get to without a lot of travel.  Some areas don't have a lot of Lyme docs, but things work out, so just keep trying.  

[JackieCalifornia]

Many of these Lyme groups are run by volunteers (mainly people like you and me) who have had Lyme and then stick around to help others.  This is end of school AND vacation season AND also Lyme season, so response time may lag.  

Just keep trying -- and be sure to include ILADS as source to find a Lyme doc.  ILADS has a staff, I believe, so do keep trying, and also see what you can find in your local area.  There are also state or regional groups that are not part of ILADS, and they can be found just by searching around on the internet.

Your short bio that shows when I hover the mouse over your screen name does not indicate what part of the country you are in, and if you are willing, then consider posting a new thread here (not buried in a long thread like this one) that is titled something like 'Need LLMD near Lexington KY' or whatever describes your general location.

There is no super-sized organization (whether private or government) that 'runs' the whole Lyme empire, so it takes a little digging.  Once you find some connections, it will start to fall together.

[Katya4]

I filled out the Referral request already, have not received anything yet.

Did not get reply from the local lyme group either, nor a call back from any place. :(



Am I doing something wrong? I'm not getting any replys or stuff in the mail, maybe it takes a few weeks? Or maybe there is nothing in my area at all!?! ?

[JackieCalifornia]

Welcome to the wild, wacky world of Lyme.  Sigh.  

(It's almost 3am here and I'm tired, so I'm sorry if what follows is a little fragmented.)

A few approaches you might try (these may repeat things above, it's 3 am and no time to re-read above):

-- Contact ILADS, the main voluntary group for MDs who have a more progressive view of Lyme.  ILADS is short for International Lyme and Associated Diseases Society.  If you go to their website, it will tell you how to request member docs' contact information near you.

-- Post a NEW message on this site, titled something like

                         'Need LLMD near [Buffalo NY]'

or whatever area you are in.  That will catch the eye of someone who isn't reading all the posts all the time.  Also search on this site for geographic labels like the name of cities you could drive to.  Once diagnosed, follow up appointments are often only once a month, so it's worth the drive for the right doc.

Also, just search this site for a city name like [Buffalo NY or wherever you are] and see if anything old comes up.  Won't take long, and sometimes people who have cycled through here just happen to have lived near where you are or can get to.

-- Dig around online to find any Lyme patient groups in your area.  They sometimes keep a low profile, but can be found.

-- Do an online search for key words such as
                         ----   LLMD Lyme Buffalo NY  ----
or whatever area you are in or near.  It may turn up groups you haven't heard about.

Go for it!  Good for you for continuing to take care of your dear one.  Let us know how it goes, okay?

[Katya4]

Oooops!!!! Sorry!!! I didn't know that, given I found it on another site in someone else's post!! Ha! Also I found him under google, so maybe he isn't concerned?

But sure explains why it is so hard to find them! Holy cow!

Do you have any tips on that?