Does this sound like possible Lyme, and need a LLMD in/near Arkansas

Here's my story-

I know I have had tick bites in the past, as a child and an adult. I honestly never paid much attention to them, but I definitely don't remember any rashes.

about 5 years ago I developed carpal tunnel symptoms, that progressed to involve both entire arms and hands. I had surgery that didn't help.

In April 2013 I had my 2nd child, and soon after multiple other symptoms began popping up. Neuropathy that is tentatively diagnosed as small fiber because EMG/NCVs are normal. I have buzzing, tingling, vibrating feelings in my feet and lower legs, and sometimes randomly on my scalp. I have muscle twitches off and on. I became extremely stressed when this all started, convinced I had MS or ALS which made everything worse. MRI of brain and entire spine is normal. All bloodwork is normal (including Lyme ELISA) with the exception of a positive ANA.

I have eye floaters, but my dilated eye exam was great. They've increased over the last year and are very bothersome. They seemingly came out of nowhere over the course of a week or so.

I get a strange body rocking feeling when sitting still sometimes, as if my body is gently rocking back and forth in time to my pulse.

I had a period of a couple weeks of skin hypersensitivity, where my skin felt sunburned. Thankfully this went away.

I wake up in the night with my heart pounding, like a full on adrenaline rush in my body.

All the tests I've had so far are leaving me empty handed, so I am wondering if it would be worth it to pursue Lyme further than the ELISA.

Does anyone know of a good LLMD in Arkansas?

Definitely could be Lyme. Elisa test is useless! Mine was negative. I did get western blot done which was also negative but one band was present, 23kd. Which according to my LLMD is 99.6 positive for Lyme.

So my advice to you is get western blot and even if the test comes back negative take results to LLMD!!

Is the Western Blot the Igenex test or is it something any regular PCP will be familiar with?

Hi Windypetunia,
Welcome to our community! You definitely have enough symptoms of Lyme to be evaluated and more than likely have it.

I live in Arkansas too, and I can tell you that there are no LLMD's in this state. In order to see one, you will have to be willing to travel several hours, depending on where you are located. If you will send me an email and include the area where you live, I'll be happy to share as many referrals as I have any where near to you.

If you haven't already, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!

Regarding the testing-would you all recommend having PCP run western blog? Going straight to having her send to Igenex? Does insurance cover it typically? What about the new test that involves a 3 month culture?

Igenex isn't covered by very many insurance plans, but check just in case. Igenex isn't a sure fire way to get a positive, even if you are infected, but you will have a much higher chance at getting a positive result if you are going to.

There is a program that Igenex sponsors that helps pay for Lyme tests if you have a low income. It's called Lyme TAP. Here's a link: www.lymetap.com/

I'm so sorry that I haven't gotten back with you by email - our internet went down most of the day today and I'm playing catch-up now!!! I promise I'll write tomorrow though.