New - An introduction and wondering if I'm on the right path

Hi Everyone,

I’m new here, in the throes of chasing down a diagnosis for whatever is going on with me…which I think more and more to be lyme. I did have an ELISA, which came back negative, but I think it is probably time to move on to the Igenix test.

I took the Horowitz test and came in at 58. My symptoms are brain fog, lightheadedness, a pins and needles tingling that moves around my whole body: face, scalp, legs, arms, sometimes torso. I also have night sweats, poor sleep, sound and light sensitivity, and now recently some anxiety along with some awful panic attacks (a couple of recent posts here have been a comfort to feel not alone in these!)

My lightheaded thing started about 4 years ago, the tingling just a few months ago. So if this is lyme, I’m later stage. My symptoms also have been coming in a cycle of 4 to 5 weeks between a week or two of being bad. Then when I feel good I start wondering what the heck I was thinking, and maybe it was all in my head!

I’ve been working mostly with my naturopath, as my primary care recently retired and I didn’t think I was getting anywhere with him anyway. I’m in the process of switching to a DO in my naturopath’s practice for my primary. Anyway, so far I had a positive ANA and I also have Raynaud’s so I’ve seen a rheumatologist for a battery of tests, nothing conclusive there other than I’m kind of on a watch for lupus. Next up is starting with a therapist tonight for the emotional side of this stuff and I’m seeing a neurologist next week. I ordered an Ingenix test and have a follow up with my naturopath in 2 weeks. We talked about stepping up to further lyme testing if we’re not finding answers, so I’ll ask her to sign off on the test order for me when it arrives. But even before I see the neurologist I’m thinking that lyme really might be at play here.

Oh, and I’m 45, female, I live in Connecticut and I’m pretty outdoorsy and have two dogs…so I’m pretty much a “good” candidate for lyme.

So after all that, what is the kind of standard path everyone has taken to arrive at their diagnosis? Or is there anything “standard” about this? Have you all seen neurologists? I feel like I don’t want to go barking up too many trees at the same time, but I also want to be sure we’re not leaving stones unturned. I’m frankly not even sure what to expect at a neurology appointment, and I’m a little nervous about it! Any other practitioners I should consider seeing, aside from a LLMD?

Thanks for being there, everyone, this forum is already so helpful!

Kristin

Welcome BDMX2. I saw way too many doctors and I tested negative for many of their tests. I would highly suggest calling Igenex and request a test kit. They will ship it for free. It is well worth the $210 that you give them when sending back the kit. If you need more info on how it is done just ask us.

By the way, I have Raynaud symptoms on all my extremeties.

Patty

I live in Massachusetts and I saw neurologists and they were really of no help in diagnosing Lyme but they were not Lyme literate.

However they did rule out MS, Lupus, rare diseases, Brain cancer and strokes.

I understand how difficult it can be to have all these symptoms with no answers.

I would definitely think about seeing an llmd and I think the Igenix test results take about 2 to 3 weeks to get back.

Meanwhile you could start if you already haven't eliminating sugars, alcohol, gluten and start detoxing. It will help your body and it is important if you are dealing with Lyme and Co.

Hang in there and take care, Jo

sure sounds like lyme and co-infections to me. if you can find an LLMD you prob don't need any tests as you can be clinically diagnosed. that's the first thing i would focus on.