New & Scared; Q about IgeneX

Hi all I'm new to this forum, and also "new" to LD (though I suspect I've been infected for many years, maybe a decade or more). Going to introduce myself, and then I have a few questions about IgeneX testing and preparing for it at the end of the post.

I live in Chicago and I've been working in environmental restoration for about 5 years. I recently quit my job because of the onslaught of symptoms that are interferring with my ability to function at work (well, everywhere), and the constant tick exposure. I have been bitten by more ticks that I could ever count; some were removed correctly and quickly; others I did not find for several days. I've found four species of all life stages crawling around, or attached to me at some point. I remember my dad burning them off with matches when I was a kid (I now know this is so dangerous!). I'm 29 and I've spent most of my free time outdoors, since I was small. My weird hobbies include taxidermy, mycology, herpetology - with all the ticks, the wild animals (dead and alive), the fungi, and working in areas of extreme heavy metal contamination... [inserts Ralph's "I'm in danger" meme here lol]


I have been having head-to-toe issues for years, but only recently have I started to look into LD testing. I have maybe avoided it all this time because I know how elusive LD can be, and that testing is inconclusive and often inaccurate. And, moreso, I know that treatment is complicated - I didn't want to face that diagnosis. Until recently, no MD has taken any of my physical complaints seriously. Debilitating pain in my upper back and neck has been coming and going for a decade. Some days, I wake up and I can hardly move. Now it's all my joints; the newest problems being my hips and elbows. I can hardly sleep this week because my feet hurt so bad. I have been diagnosed with many psychiatric problems (anxiety, depression, bipolar), but these diagnoses have never seemed right or without a deeper cause (and psychiatric treatments alone are ineffective). I have cognitive and neurologic issues that have been spiraling in the last 2-3 years. I feel like I'm genuinly losing my mind, like it's melting away right in my skull. When I read through more comprehensive lists of LD symtoms, I can easily check off 20-30 things, from every body system. On July 23, I had what I believe was a TIA stroke and was rushed to the ER. The attending resident told me I was having "anxiety and a headache"... I've been following up with a neurologist who's ordered MRIs for this Tuesday - anxiety and a headache doesn't make you forget your name or address, turn your arm numb, or cause you to not recognize your boyfriend when he arrives at the ER. But, I am from all outward appearances, a healthy and physically fit 29 year old with no serious medical history. I'm now finding peer-reviewed research about LD affecting your cerebrovascular system, and the more I read about long-term affects of LD, the more I feel like I'm reading about myself and what has been happening to me slowly but steadily for so many years.

So! I had the standard two-tier test done for the first time in May. I requested it at an urgent care clinic, when I went for unexplicable and severe pain in my jaw for several days in a row. They said it was probably TMJ and that I should take some muscle relaxers. The ELISA came back negative, so of course they did not proceed to western blot. I wasn't convinced, so I had western blot done elsewhere. The 58 band was the only reactive band. I have since seen a rheumatologist who has ordered additional LD testing. I haven't gotten results back yet, and I'm not sure what test he ordered. I follow up with him this week, as well as the neurologist and the MRIs.

I want IgeneX testing done, but they offer so many testing panels. Which panel is generally recommended for LD and associated infections - baseline, for poor boys on a budget? I just lost my insurance along with losing my job recently. I found a LLMD in Chicago who I have not yet seen, but I am working on getting new insurance coverage that he accepts. I have also seen some mention of "prepping" for LD testing with abx and herbs. I haven't been able to find an example or explanation for this. Does anyone have a resource for this?

Roadpup,

You've got a good group of symptoms common to Lyme and co-infections. Testing can be very expensive without coverage, and very unreliable from even the best Labs. I don't know the cost of IGeneX test suite but it can range from around $300 for just Lyme to over $1000 for the full suite of Co-infections.

To prepare for a test i was under the impression that you should be off all antibiotics for a few weeks so the Lyme is more prevalent in the blood instead of hiding from the Rx. Call them and see what they recommend for preparation time and what the minimum cost will be for just Lyme and maybe Bart as well given your symptoms. Most of the rest of the co-infections will be treated by a good Lyme protocol, except for Babesia which needs to be targeted differently and some say should be treated first anyway.

Many of us here have been through a very similar journey and are here to share our experiences and offer advice.

Godspeed... you have taken the right first steps

Welcome roadpup!

I would suggest you just get a lyme test Western Blot IgM and IgG.
I believe it costs $250 for both.

I was thinking their newer test: IGXSpot wouid be a good one BUT I believe that one is time sensitive (they need to receive the sample within 48 hours?) which would be difficult .


Both Lyme docs I’ve been to have clinically diagnosed my coinfections. No further testing to see what coinfections I had.
If the lyme doc wants coinfection testing - he/she will tell you which ones to get. You don’t want to pay for more tests if they’re not what the llmd wants.
Mine didn’t ask for further coinfection testing

You will need to call Igenex and they will send you a test kit. You will need a Dr to sign the lab req for the tests.
Then you go to the lab with the kit and get the blood draw - then send it back to Igenex.

https://igenex.com/

May I also add to Girlie's response that you should schedule to have your blood drawn on a Monday early enough to ship it to IGeneX the same day. You don't want the blood samples to sit around over a weekend to ensure most accurate results.