Could it be Lyme?

I'm just going to repost my original post that I put in the anxiety forum but with a few extra notes about my Lyme testing:

My general doctor never brought up Lyme disease when I first came to him with the symptoms I detail below. I specifically had to ask to be tested for Lyme disease. My first issue with facial tingling and just general unwell feeling occurred around March 15th, of 2014. I had a Lyme Igg/Igm Antibody test done on June 21st of 2014.

When the results came back I got a message from my doctor saying the results were normal, but later looked on my "my chart" which is an online portal for patients that my local hospital/physician group does and saw this narrative in the test results: "No antibody detected. Result does not exclude Borellia burdorferi
infection. An additional sample should be tested within 2-4 weeks if
early infection is suspected."

The doctor did not follow up with me for retesting. Since the test was negative though, I assumed he knew what he was doing and moved on. Also, whenever I've been asked about this by my neurologist and the hematologist I saw both asked about the "bulls eye" rash which I've heard is not common. I tell them no I didn't have it and they seem to conclusively believe that I do not have lyme disease.

I live near a wetland and have a dog and a cat. I also had what appeared to be some kind of bite on my left arm just around the time this all began.

Here's the original post:

Hi everyone,

I wasn't really sure where to post this. Someone else posted a similar case here, so I decided to put it here. Moderators feel free to move this someplace else. My feelings won't be hurt.

Anyway, on to the reason why I'm posting. I need to make sure I put all the details here so I apologize for the length.

A little over a year ago, I began having tingling in my face. This began in my left jawline near my chin and eventually spread to other areas of my face such as my forehead, cheek, nose, and the left front part of my neck. This tingling is not numbness or paralysis. It is basically crawling, almost subtle, tingling.

about two weeks previous to this I had just gotten over a cold. The week before the tingling started I remember feeling very worn out, and almost sick like I had the flu. I didn't have the flu, it was just a lot of fatigue and neck pain. The neck pain was on the left and right frontal side of my neck and was quite strange. In the early stages it felt more pressure than pain. On the sides of my neck all the way up into both jaw joints. Eventually this started to go away and the pain would only return in the evenings around 6 or 7 o'clock.

When the tingling began, the neck pain was still present until several months later. This pain has gone away almost 100 percent except for a small amount that still recurs near my left jaw joint.

The continuing mystery is mostly the tingling in my face. It has not gone away.

To start my family doctor ordered tests to check for thyroid problems, vitamin deficiencies, and lyme disease. All were normal.

I've seen a neurologist and have had MRI's of my neck and head. They were clean aside from a 4mm tonsilar ectopia (low lying tonsils) on my brain MRI. The neurologist claimed this was fine.

I had a jaw panoramic X-ray taken by my dentist. He claims it was fine.

Had more blood tests ordered by the neurologist for various diseases and autoimmune disorders(not sure which ones) and all were negative. I returned to his office a few months later and had even more tests done, one of which came back with a semi-troubling result. It was a test for M-Protein that came back with a level of .4

He sent me to a hematologist who then ran more tests, like Iga/Igg/Igm, Free Kappa/Lambda Light Chains, Metabolic panel, and Cbc with differential. All were normal. She said I had what is called MGUS and said I should come back in 6 months to be tested again for M-Protein levels. She explained what MGUS is, but was not inclined to connect it with my facial tingling based on the fact that examination and test results showed nothing significant and the level of M-Protien was .4 which according to her is extremely low.

Ok. So now what? Still having tingling and taking Neurontin as a band-aid for that.

My neurologist has ruled out MS. Says there's no evidence of it. I can walk fine, no dizziness, no balance problems, no vision issues. I have had tingling in my legs and arms before but not often. The one thing he's having me do is monitor my blood pressure when tingling occurs to check for a vascular issue. So far that has really not shown anything.

All signs point to me being a normal, healthy 32 year old guy. Except for the tingling.

Anyone know what the heck could be going on?

Any advice would be appreciated. Thanks!

Hi happyjo,

Thanks for your reply. I've heard finding and making appointments with these LLMD's can be difficult. Would I need a referral or from what you know could I just see one without a referral?

Thanks.

If you want to get tested - the best lab is Igenex in California. You can order the test kit from them and when you receive it you need a Dr to sign the lab req - any Dr can sign it. Then take it to a lab for the blood draw and send it to Igenex via FedEx.

The best test (in my opinion) is the Western Blot IgM and IgG - total cost of both is $210 plus Fedex charge and also lab charge if applicable.
Have the test done in the beginning of the week so the sample doesn't sit somewhere over the weekend (Igenex is closed Sat and Sun)

Good luck! And remember - we're here to help you. Ask us questions, read posts, etc.

And when you have a moment or two, please take a look at the thread at the top of the page titled: "new to Lyme?...Start Here!"
It is full of good information - including a section on detox ideas. Detox is something necessary when treating for lyme disease. It will help you rid your body of the toxins created from the die-off of the bacteria.