Just tested positive for Lyme. So many symptoms, so many questions.

Hello, all. I've been sick for over a year and a half with several neurological issues. I've been tested for Lyme Disease in the past, but I just tested positive for it. Before this my neurologist has said I have fibromyalgia, MS (nothing showing up on MRIs, though), and I was even diagnosed with a seizure disorder. I posted on those forums months ago, but never got responses. I went through the "Welcome to Lyme..." post, and I'm sure that covers 99% of my symptoms, but that is a lot to take in!

I'm setting up appointments now to see an Infectious Disease Specialist, so I guess that's the start.

I have so many questions for you guys. I'm just in a little shock right now. Anxious, scared, but excited at the thought of finally knowing what's causing all these problems I've been having. My biggest concern right now is work... to support my family. As of right now I am only able to work a couple days a month due to pain. Will that get better with treatment? I'll just go ahead and say that I'm active duty military, and their patience is running very thin with me. I'm already on the verge of being kicked out, which is completely understandable do to the fact that I can't do much to support the mission. Of course, I don't want to be kicked out for two reasons: I love my job, and I have no other way to support my family. Does anyone have any words of advice on this? Will my symptoms be managed well enough for me to travel the planet doing my job?

Now, I'd like to share my story if that's ok. Just some background information on getting sick, and my major symptoms. I grew up in the hills of West Virginia where I know I was bitten by ticks while very young (5-ish) and as a teenager (16-ish) (I'm now 30). I never had any weird symptoms though. I started getting sick in December 2011. I had just visited home that Thanksgiving, a mere weeks before I got sick. While home I did some hiking, but I never found any ticks or bites that I can remember. But, I also traveled a lot for work. I had recently been to Mongolia where I traveled around the very rural areas living off the land. I've always wondered if I got something while I was there, because I ate some VERY questionable food.

My symptoms started as terrible headaches (before this all started I could count on one hand the number of head aches I had in my entire life; but I started getting terrible migraines, even losing vision in my right at at times during the migraines.), dizziness/loss of balance, fatigue, numbness and tingling throughout body. Everything always gets worse with exposure to heat and/or physical exertion. My symptoms evolved to include more and more pain in my joints (knees, neck, back, shoulders, ankles, wrists... everything I guess), lots of blurred vision and trouble keeping my eyes focused, ridiculous ringing in my ears.... does any/all of that sound familiar to anyone? My short term memory has just about completely disappeared. I get frequent bouts of terrible waves of electric pain (best I can describe it) that starts in the back of my head, travels (very uncomfortably) through my neck and spine, and into my shoulders, arms, and legs. The sensation results in me balling up in the fetal position while my muscles randomly clench, twitch, and fire in spasms in an attempt to relieve the pain in some way. I really hope no one else experiences this, but at the same time I need someone to relate. It's the scariest symptom. I can only say that it feels like a conscious seizure.

Questionable symptoms: Imaging found a cyst on my pineal gland and my thyroid gland. Is that related at all? Newest symptom (within the past week or so): and this is WEIRD... I have a lump in my cheek. Not in my mouth, not on the surface of the skin, but in-between, INSIDE MY CHEEK! It was very painful for a couple days, but now it only hurts if I touch the area. It's about the size of a nickel... you can see it by looking at my face, it looks like my jaw is swollen. So, I also have a lump on the bottom of my foot. It was painful for a couple days no matter what I did, now it hurts when I put weight on my foot. Isn't that just weird? Can anyone provide any insight on that?

My headaches have become incredibly intense lately. Hard to describe the pain. Has anyone else had a lumbar puncture done? These headaches feel like the headaches that follow that procedure... just REALLY painful. Turning my head sends waves of discomfort from my head through my body, and it's accompanied by dizziness.

I'll stop. I didn't mean for this post to be this long, but (like the title says) I have SO MANY questions... and symptoms... and an interesting past to go along with it. Any and all help/discussions/advice would be greatly appreciated. If for nothing else, I like to share so that others that are experiencing issues know they aren't alone. Thanks, everyone, for your time.

My symptoms also started as terrible headaches, numbness and tingling in the left side of my body. The pain in my joints and ringing in my ears went away with a month of antibiotics. I still have blurred vision, memory problems. I get frequent waves of electric pain that starts in the top of my head and my back. A week ago I started feeling really tired and it is hard for me to breathe.

The Neurologist told me in February that my test was positive, but I didn't have Lyme I visited many other doctors (2) Rheumatologist, (2) Neurologist all my test came back fine. The only one positive was the Lyme, but without the Western Blot test confirmation no one wanted to treat me. I finally found this forum where you find a lot of people that went through the same thing we are going through, we don't see faces, but you can feel their warm hearts that want to help other people who are suffering.

I am scheduled to see a LLMD next Monday, I had to wait a while and believe me I can't wait to see him. Like aphysicalwreck said you need to put out a post for a LLMD in your area as soon as possible

I had a lumbar puncture done and it wasn't fun after the procedure I was in bed for a week.

I can't express how thankful I am for all the responses. Not only on here, but the emails as well. I've already learned that the LLMD is separate from the Infectious Disease Specialist (that was my first question). I'll take your advice and post about finding a good LLMD in my area. I have a lot of research to do in the coming days! As soon as I digest all this information I know I'll be back with many more questions. Thanks again for helping me get on the right path, and so quickly! The anxiety is melting away. And, of course, keep sharing the info and experiences; I'll use every bit of it.