BJ47

Anyone here have experience with UVLrx therapy to treat PANS/tics? For those unaware, the UVLrx machine zaps your blood with UV light to kill pathogens (including Lyme/strep), boost your immune system, wound healing, oxygenation, etc. I begin a series of 10 treatments in about a week, prescribed by my LLMD. He seems very excited about this treatment method. In fact, the machine is so new his staff was trained on it only last week. Any thoughts or experience with this?

I was recently diagnosed with chronic Lyme (with a chronic strep confection). Since I've had tics since childhood, my doc considers it PANS. I've been on his treatment regimen for a couple weeks now, which includes minocycline, rifampin, antifungals, a biofilm buster, LDN, and a few other odds and ends. I also recently got back the results from a urine neurotransmitter test. It showed I had low levels of GABA and serotonin, and high levels of epinephrine. The recommended treatment was a duo of supplements called Travacor and Symotix. My LLMD/PANS doc agreed with the assessment so I started the Travacor per the lab's instructions, and added in the Symotix a week later. Upon adding the Symotix, I noticed an increase in my tics. Just really intense internal tension and irritability. I read the label and saw that it includes 2mg of manganese...100% of the daily requirement. I've read before that people with tics should not take manganese. I don't know if the increase in tics could be from the manganese or part of a herx reaction to the Lyme/strep dying off. I got some relief from stopping the Symotix after a couple days so I'm inclined to believe that was the problem. Anyone have any info about tics and manganese?

Wow, that's almost exactly like me. My mom recently tested positive for Lyme, so it's possible my case is congenital. It would make sense that the Lyme suppressed my immune system very early on and made me susceptible to all these other infections.

I have three siblings, and two of them have symptoms of OCD/ADHD. I'm beginning to think that in many TS cases (mine included), there's a genetic predisposition that's activated or made worse by inflammation. Whether the inflammation comes from chronic infection, gluten, allergies, etc. I picked up my Lyme labs today and it looks like I do indeed have Lyme. My IFA test was 80, which is a positive for b. burgdorferi. On my IGM test, I have a + on band 18. And on my IGG, a + on band 23-25. Also 4 other IND results on Lyme-specific bands. I'm guessing I have piles of antibiotics in my future.

That's incredible! Do you think that points to the infections as the source of her tics, or that the infections simply aggravated a genetic predisposition to TS?

Thanks Kim! Definitely some interesting info via your links. I found out my Igenex results are in so I should be able to discuss everything with my doc next week.

Hi, I'm 35 now and began having motor tics around age 9. I was formally diagnosed by a neurologist with Tourettes Syndrome at age 19, though I've never really had verbal tics. I had frequent strep throat as a kid. I can still taste the bubblegum flavored antibiotics! It got to the point where my pediatrician said if I had strep one more time he'd want to take my tonsils out. Terrified me! So after that, when I got a sore throat, I just wouldn't tell my parents. It's possible that in addition to all the treated strep, that I had a case or cases or untreated strep as well. Enter PANS. I've been working with an integrative nurse practitioner to help me get to the root of my tics. One of the things she noticed was that my strep antibodies were high. She called this "systemic or neurological strep." We did a month of antibiotics but the numbers only came down a little. Tics weren't affected. Enter Lyme Disease. My mom was diagnosed recently with Lyme and suggested I get tested too. She read that Lyme can present as Tourettes, or at the least aggravate the symptoms. I had labs done by a "Lyme literate MD" here in Nashville and have a follow up appointment with him next week. I have most of the lab results on hand (except the Lyme test) and am trying to piece everything together. The CD57 test shows a result of 46, which is low. So low that some docs says it's likely a diagnosis of Lyme + co infections. We know I already have a stubborn case of strep, and the testing also showed the following: Cytomegalo virus and Epstein-Barr virus: past infections Herpesvirus6 and Mycoplamsa pneumoniae: past but not current infections Does this make sense to anyone? I know I can't be the only person to have gone through all of this. Piecing the puzzle together seems impossible sometimes. Hope something here jumps out at one of you. Would love any input!