Peace of mind, is this indicative of Lyme?

Long story short, last June I had some abrupt panic attacks that started. It quickly turned into a feeling of not being all the way here and just out of it. Had an MRI, blood tests, all fine. Was told it was anxiety, went on Citalopram 30mg. Feelings didn’t go away, also acquired weird vertigo and dizziness that is really bothersome when lying down or sitting down. It actually feels like my body or head moves abruptly or that my body is spinning or being pulled in many directions and I get the feeling that I’m not touching the surface I’m lying on sometimes. Dealt with these symptoms for months because I was told it was anxiety. In May, I decided to come off the medicine because it wasn’t working and I want to live to enjoy the day, not to get through the day. I tapered and have been off for 5 weeks. These symptoms have actually gotten a little worse. Bottom line is I’d like to know if this sounds like Lyme at all. I know it probably isn’t and it might just be anxiety talking, but I’m not anxious half the time these things happen and it’s pretty much 24/7 and greatly affects my everyday life. Last 2 days I’ve been on the couch majority of the day. I also am often fatigued, lightheaded, and lately uncoordinated. Also sensitivity to light, have to wear sunglasses in stores.

Thanks for your reply. Thing is, I’m NOT an outdoor person. Hate being outside. Only things I remember about before I got sick was running on a treadmill for the first time and feeling really ill that day and also started a new job (sign of it being anxiety). However, I can never shake the feeling it’s something else because it’s predictable how I’ll feel...

Not helping because I feel crazy and have been to a ton of doctors, seeing an ENT in 2 weeks. Parents keep telling me Lyme would be more severe and I’ve read about symptoms that I don’t have. I’m just lost. Sorry if I’m not making sense.

No, treadmill was in my house.
Yes, it was a Kohl’s.

I feel best when I’m at home because at least I can rest wherever I need to.
No chemicals, and no recent vaccines.

I would recommend getting tested for Lyme. You have a couple of options here.

If you have insurance that covers Labcorp and a doctor willing to order a Lyme Western blot with all the bands, that would be the most affordable. Some people do test positive with that but many do not have enough positive bands to be considered positive by the CDC. If you get this test, be sure to get a copy of your results showing all the bands.

The more accurate test is from Igenix lab and costs around $250, I think.

You could also just find an LLMD (Lyme literate MD) and be evaluated.

jeff8787 said...
Thanks. I’m in the in-between stage of my life so I still rely on my parents financially. So now I’m gonna have to ask them for this and they’ll think I’m crazy and say no. Also, I think the last two options would be better, my doctor dismisses it as anxiety.

I'm sorry. Hope your parents will help you get tested. Lyme and coinfections like bartonella and babesia are very real and can cause a host of symptoms, including emotional/psychiatric/neurological ones. They are not imaginary. You know what you were like before this started and what it's been like since. It' hard for anyone who hasn't dealt with this themselves to comprehend what it feels like or to believe what they can't see.

Hopefully some others will chime in soon with more suggestions.

And on the other hand, when I’m feeling bad and look up bad feeling in head, out of it, floating feeling, etc it commonly leads to a possibility of Lyme which is why I’m freaked out.

acarined said...
Do you have pets?

I do not.

jeff8787 said...
Thanks for your all of your help and support. I have another question (sorry for pestering). I know Lyme affects many people differently, but do I actually have enough symptoms to consider testing? They’re no doubt awful, but when I look up Lyme, common symptoms are the buzzing/twitching/burning/crawling/ etc feeling, which I don’t have.

Hi Jeff - welcome!

I never thought my symptoms were Lyme either - when I googled, I’d read bullseye rash, flu like symptoms, fatigue - none of which I had... so I didn’t test.

14 months later - Igenex lyme WB IgM positive and by then I had experienced over 30 symptoms.

I would look into Lyme - you could start with the test that your insurance covers - and then if you get a negative try the Igenex ($250)

You can test now and schedule a LLMD appt for several weeks out and bring your test results with you.
Often an initial consult is several weeks before they can get you in.

Thanks for your replies! I will likely sound dumb with these next questions so I apologize, but I know nothing about this process. So you have to order a test on your own? ie a doctor won't? And I would want to just do the most accurate test to start with. Also, I am still concerned because it has been over a year, but I do not have nearly 30 symptoms. I only worry about getting tested because I don't want my family to think I'm crazy, and I feel guilty about spending money on tests that are negative. I will make a post then!

Girlie said...

jeff8787 said...
Thanks for your all of your help and support. I have another question (sorry for pestering). I know Lyme affects many people differently, but do I actually have enough symptoms to consider testing? They’re no doubt awful, but when I look up Lyme, common symptoms are the buzzing/twitching/burning/crawling/ etc feeling, which I don’t have.

Hi Jeff - welcome!

I never thought my symptoms were Lyme either - when I googled, I’d read bullseye rash, flu like symptoms, fatigue - none of which I had... so I didn’t test.

14 months later - Igenex lyme WB IgM positive and by then I had experienced over 30 symptoms.

I would look into Lyme - you could start with the test that your insurance covers - and then if you get a negative try the Igenex ($250)

You can test now and schedule a LLMD appt for several weeks out and bring your test results with you.
Often an initial consult is several weeks before they can get you in.

Igenex site

/igenex.com

Thanks so much for all the info, incredibly helpful.

jeff8787 said...
Sorry, I’ve got another question. On igenex the lab kits are $20, which one would I order, I’m assuming blood? Where would I go from there to get the $250 total. And do you just ask a doctor to sign?

What? they charge for the test kits now?

Yes, blood. I've not heard of this - where you choose blood or urine?


This is on the Igenex website?

EDIT - I checked - the $20 is a deposit...so I think that will be part of your payment...not an extra $20.

I do see they ask whether it's blood or urine though.

So, yes blood test.

When you get your test kit, these are the tests you want:




188 Lyme Western Blot IgM 86617 $125.00

189 Lyme Western Blot IgG 86617 $125.00