Ever since I announced my Lyme diagnosis, I’ve been inundated with questions from readers. While I’m not qualified to give anyone medical advice, I’ll gladly share my own personal experiences. Given the number of messages I’ve received, I figured I should answer the most common questions in a post for all of you, so here you go:
What tests did you do?
Igenex Labs. Insurance may or may not cover these Lyme tests, but the standard CDC Lyme tests are highly inaccurate and very often give a false negative when a person actually does have Lyme. Even Igenex can give a false negative, but it misses fewer cases.=
If you do get a positive Igenex result (like I did), it can make diagnosis easier. Nevertheless, Lyme Disease is still considered a clinical diagnosis, so Lyme specialists won’t rely on tests alone to diagnose you—they’ll also consider symptoms and history.
Who ordered the tests?
In addition to my PANS specialist, I have a local GP who is easier to get in contact with, so my parents and I asked her to order Igenex. Although she doesn’t know a whole lot about Lyme or PANS, she’s been very open-minded and willing to try anything reasonable that might help me. Basically, it was our idea, and she agreed to do it.
Why did you think to test for Lyme?
My PANS doctor told me a year and-a-half ago that it would be extremely unlikely for me to relapse ever again or to need more treatment. But guess what happened this spring? Arguably, this latest PANS exacerbation was my worst ever, which was totally unexpected at age 21, given that it’s supposed to be a pediatric condition.
We all knew this meant some major trigger must have been at work, and given how much time I spend outdoors, a tick-borne illness seemed reasonable. Although I’d improved since my IVIG in the summer, it felt like there was a missing piece in the puzzle. I’d heard from many readers that Lyme is common in people with PANS, so my team thought it was time to rule it in or out for sure.
Did you have a tick bite or the Lyme bull’s-eye rash? Do you remember getting sick?
Growing up playing in the woods, tick bites were a given, but I don’t remember having any over the last few years, and I never had a rash. But apparently, only about 50% of Lyme patients get the rash. However, in the spring, I had a flu-like illness, and I was bedridden for days. Mentally and physically, I never fully recovered. Then, I had heart and nervous system issues (including POTS) that I’d never had before, followed by a descent into a horrific flare of PANS symptoms. It wasn’t the flu—it was Lyme.
Should I get tested for Lyme?
I’m not a doctor and don’t know your history, but if you’re not able to get all the way better with only PANS treatments, please talk to your doctor about Lyme. Better yet, look into Lyme disease before you go way down the rabbit hole of autoimmune treatments. While not everyone with PANDAS/PANS has Lyme, it’s still very common in people with PANDAS/PANS, along with its co-infections (Babesia, Bartonella, TBRF, Ehrlichea, etc). The sooner you get treatment for these infections, the better.
My Lyme specialist believes I’ve had Lyme for a decade (though I remain skeptical of this). I can’t help but wonder what my life would’ve been if I were properly tested ten years ago. Don’t make my mistake.
What are your treatments?
I take two antibiotics and seven different supplements/vitamins each day. I also follow a gluten/grain-free diet (almost Paleo) and detox with Burbur and Pinella. And of course, I still take a couple psychiatric drugs (Wellbutrin and Lamictal) to manage my symptoms in the meantime. Everyone’s treatment regimen is unique, though, so don’t be surprised if yours is quite different from mine!
What’s the prognosis?
Every person responds to Lyme disease and its treatments differently. Some people take weeks to heal, others take months, and I’ve heard of some people taking years. For me, I’m expected to be in treatment for the next year and-a-half, and then I’ll just be monitored. The doctor says someday, I’ll get completely better, and with any luck, when my Lyme is gone, my PANS will be, too. But for now, I’m just taking it one day at a time…
I hope this answered all of your questions! If not, feel free to ask more in the comment section below.
Please, please, please look into Lyme disease if you have any symptoms that never seem to go away or that come and go in cycles. PANS is treatable, but sometimes, it’s complicated by Lyme. Just keep searching and hoping, and don’t give up.
For more information about Lyme, be sure to check out: http://ilads.org
13 thoughts on “In Response to Your Lyme Questions…”
I am so late to comment here lol but this is a good post for someone new to Lyme. I do not have the bulls-eye rash but I had symptoms and I was diagnosed in September 2016 and PANS in December 2016 but my doc believes I’ve had it since I was five. And 6 years later i get a diagnosis. But this is a good post!!!
I’ve been there. It took me years to heal but I regained my health. It’s a journey but you will get there. Keep going forward!
Glad you’ve regained your health! Thanks for the encouragement.
Awesome post! One thing: If you research Lyme and the bulls-eye rash, you’ll discover most sources say LESS than 50% get the rash. Like 30%.
Yeah, it can take years to fight Lyme. It’s taking years of treatment for me, because my body can’t tolerate antibiotics sometimes because of the PANS/PANDAS.
God bless your road to recovery!
I’d like to add that Lyme can be transmitted from mother to baby, and through body fluids, as well as by ticks. Even kissing, one site said! And it can also be sexually transmitted.
These are all good points–thanks for bringing them up! I was just going off what the ILADS site said about the rash, but I can definitely believe that it would be more like 30%. And wow, Lyme disease transmitted from mother to baby, bodily fluids, and kissing?! Might explain why there are so many families who all have it.
Thanks for the good wishes. I wish you all the best in your recovery as well!
Thanks for the important info. Glad you finally got to the bottom of your illness. Keep hanging in there, you’re an amazing person!
Thanks so much, Melanie!
You’ve provided a clear synopsis of a lyme component comorbid wit PANS. Thank you for sharing your perspective!
I’m glad you liked my post. Thanks for commenting! 🙂