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Lyme Disease Message Board


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I am finding the reading interesting on here and I'm new, glad I found this board.

I feel like I'm turning into a medical experiment because I've been tested for so many things in the past 2 years. It's gotten to the point I've been out of work since early May and since I can take naps, it helps a little. I have segments of the day I feel okay (usually about 1-2 hours and I'm exhausted again).

I don't recall getting a tick bite but live in an area with known heavy tick activity.

Over the 2 years, I've become increasingly sicker. I do have bouts where I'm okay. It started off where these "bouts" would last for a few days to a weeks, then they started becoming more frequent. Now they last most of the time and I get a good day or 2 here and there.

My symptoms are
-extreme fatigue, to the point I feel like I can't function. ---terrible joint pain
-Low back and neck pain
-Tingling and numbness all over my body randomly
-Recently started to get weakness and numbness in my extremities
-There are days I have to actually concentrate to get my legs to move.
-Muscle spams frequently in the past few months. Incredibly painful (you can put your hand on my skin and actually feel them happening)

-I started to have bouts of palpitations in the last 6 months. Had a full cardiac work up, negative.

-Frequent swollen glands in my neck and armpits in the past 6-12 months. I've had several bouts of slightly elevated white blood cell counts with these swollen glands, they put me on antibiotics, it gets better but comes back. (they've tested for lymphoma and looked for other cancers but nothing there). They've deemed it random viral illness.

-In the past 6 months, I'm anxious all the time, find I'm having mood swings constantly. I'm finding there are times I just don't "feel like me" and it just seems to be a semi-sudden onset over the course of a few months. This has been written off to my "increasing bouts of unexplained illness".

-Lately, I have notice I'm having trouble concentrating at times. It's like I can't focus on the task at hand and I've never been like that in the past. I've been told it's because I'm so fatigued.

-Stuffy nose all the time and dry eyes (told it's allergies even though my allergy testing was okay)

-Unexplained chronic hives (tested for everything under the sun).

I feel like I'm going crazy and honestly my doctors make me feel that way too. I swear they think I'm just making it all up. My primary did admit at my last appointment she did agree there's something "auto-immune" going on. However, she's ruled out everything "under the sun" per her and just doesn't know what it is, so it was kinda of like that's that. She didn't test for Lyme, she kinda blew me off when I brought it up.

I now seen a Neurologist today to be evaluated for a neuro/muscular disorder (her last thought). He immediately brought up Lyme disease. However, he also made me feel like he didn't 100% believe me and was pacifying me by testing for "something". I got this feeling because at the end, I told him I was off work on disability since early May (my fatigue and joint pain is so bad I have to nap 1-2 times during the day to function and it takes me a solid hour to get my arms and legs moving semi-normally) and I needed a note to stay off work and he gave me a hard time. He did give it to me reluctantly (my primary had me out but left the continuing to keep me out up to him). He made me feel like pain pill seekers must feel (I didn't ask for meds) because as soon as I asked for the note, it's like his whole demeanor changed to "she just doesn't want to work....as opposed to something is really wrong". I felt written off at that point, AGAIN.

Anyhow, I'm reading the routine lab test isn't reliable and I'm worried if that comes back negative that will be that. You've all been living this, so I'm sure you know, but I feel defeated in knowing the blood test can be so inaccurate from what I'm reading. Because I feel like if it's negative, that will be that with my doctors, it isn't Lyme (no if's, and's or but's). After reading about the progression of Lyme Disease I'm convinced this is my root cause (and I know doctors hate internet diagnosers). What are my next steps if it comes back negative? I feel like I'm at my wits end (or maybe I just want it to be something so badly, to prove I'm not crazy I'm on the wrong path).





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