Jump to content
ACN Latitudes Forums

Recommended Posts

DS 6 has been diagnosed with PANS based on symptoms. Current flare began in August/September and coincided with some weird bug bites (Dr. thought possibly bed bugs but none of the rest of us were ever bit and they stopped recurring), first lose tooth, and his MMR-V vaccine on September 16. I wouldn't have vaccinated if I was aware of PANDAS/PANS at the time! He was ticking like crazy while freaking out waiting for his needle, and basically hasn't stopped. So the vaccine itself didn't cause all his symptoms but he got much worse immediately after the needle.

 

Looking back he has had flares in the past from a virus followed by his varicella vaccine at 15 months and when he contracted Coxsackie at age 4. Not sure of the cause but at age 3 he also had a flare (suddenly seemed autistic overnight). That flare mostly resolved by removing gluten and dairy from his diet (something we had been doing before but had reintroduced into his diet over the months prior).

 

His strep titres are very low - hence the PANS diagnosis. We are waiting on Igenex test results - started with just the lyme test without coinfections. However, has some symptoms of Bartonella (leg/foot pains, and occasional chest pains), that make me wish we had just done the Bartonella testing as I realize now he could have it from something other than a tick bite and without lyme. We also just did other blood work - CBC, etc. as well as IgG testing. At this point we're flying blind about what sort of underlying infection(s) are trigger him.

 

We live in Canada where our options for treatment providers and testing are very limited.

 

We did a 6 week course of Zithromax from late October to December - it seemed to address his anxiety and OCD a little. Tics may have been reduced but did not resolve entirely. He had crazy rage, some weird tingling sensations, and GI symptoms, while on the abx.

 

At the same time as we started the Zithro we saw an ND knowledgeable in PANS/PANDAS and on her advice we put him on a grain free diet.

 

MD wanted him to continue Zithro despite its limited success and to add Valtrex given viruses have played a role for him in the past. We were concerned with the Zithro side effects. We decided to stop the abx and try just the natural treatments starting over Christmas.

 

Following NDs advice we currently have him on Biocidin, a specialized multivitamin with manganese, probiotics, and activated charcoal.

 

We realized the Biocidin was causing rage, but have adjusted the dosage that it seems to be ok now.

 

We've also tried high does Vitamin A and D (not sure it made much difference), NAC (caused almost immediate emotional outbursts), bacterial and viral nosodes (maybe didn't give them a fair try but didn't do anything), and he was on Mag/B6 for about 4 weeks - which we replaced with the more comprehensive multivitamin.

 

He's been on probiotics through out (3 different varieties - all strep free).

 

He's still on the grain free diet.

 

We stopped Biocidin very temporarily about 2 weeks ago (he was awful while off of it entirely), and when we started it again we had 2 AMAZING days. But, he regressed back to having increased tics/OCD within 3-4 days of Biocidin being given daily again.

 

Overall we've found that he is much happier while off abx and his GI symptoms have resolved (normal stools and no more tummy aches - yay!). His general anxiety (which in the past has been very problematic) is also fairly under control (or he's better at masking it?) and he's doing really well with separation anxiety too.

 

But tics are still VERY bad (like non stop) and his OCD seems worse again (hearing swear words in his head, weird rituals around even body movement - if he moves his right are he needs to move his left, some finger licking, etc). The tics didn't resolve on Zithro, but I'd say they are worse now off of it and the OCD is definitely worse.

 

His symptoms seemed to really flare up again in the past 10 days or so and have again coincided with new wiggly teeth. We introduced some Xylitol mouthwash last weekend. We have a dentist appointment on Monday to get his mouth swabbed for bacteria, and hopefully prescribed some abx mouthwash. I won't let them do a cleaning right now (although he could use one).

 

I may be able to persuade the MD to try Keflex (she mentioned it), but she felt we should stay on the Zithro and introduce Valtrex before changing abx. However, I will have to wait to get in touch with her to get a prescription and I don't know how long that will take.

 

I'm feeling really worried about his severe tics and the worsening OCD, and like I need to do something else ASAP!

 

Wondering if the rage in response to the Zithro and the Biocidin previously was a herx if he has Bartonella/other Lyme. If thats the case on the current dose of Biocidin without abx, the rage seems under control (with just one outburst in the past 2 weeks), so I don't think he's herxing.

 

My question is should we try Zithro again for a few days to see what happens? Or should I be patient in waiting for the dental swab, lyme testing and possibly wait for a Kefflex prescription from the MD?

 

I've read Zithromax is not particularly effective on oral bacteria, and if teeth are his culprit wondering if Keflex may be more effective? MD suggested Keflex not Augmentin as the next abx to try so I don't think she will prescribe Augmentin. Im stressing out feeling like we are doing nothing effective while his tics and OCD are getting worse and worse.

Edited by MamaBeartoCharlie
Link to post
Share on other sites

We're currently treating lyme for my daughter, so I can't speak to treatment for all PANS symptoms (there are much more knowledgable people on this board). However, my daughter's anxiety/irritability always get a lot worse with a loose tooth. When this happens, dosing Motrin in the morning and again before bedtime is the only thing that helps us.

 

Also, my daughter's tics get worse on the start of any new antibiotic b/c she experiences a herx from the lyme bacteria die-off.

 

If you want to test for lyme co-infections, I highly recommend the DNA Connexions test. This is the description on their website: The Lyme panel tests for 4 different genes that are found in Borrelia burgdorferi, the most common cause of Lyme disease in the United States, and 8 common Lyme disease c0-infectors including Babesia microti, Babesia divergens, Babesia duncani, Bartonella bacilliformis, Bartonella henselae, Bartonella quintanta, Borrelia miyamotoi, Borrelia recurrentis, Ehrlichia chaffensis and Anaplasma phagocytophilum. Testing of Lyme co-infectors (other tick-transmitted organisms) indicates likely infection with the Lyme spirochete as well.

A positive PCR result from the DNA Connexions Lyme test indicates the presence of DNA from B. burgdorferi and/or other co-infectors. A negative result does not prove a patient is not infected with a tick borne infection, rather it indicates the absence of detectable Lyme and/or other tick borne co-infections. A patients ability to fight the disease, stage of infection, and timing of courses of antibiotics are only some of the factors that may affect the detectability of the spirochetes DNA.

 

http://www.dnaconnexions.com/Lyme-Panel-Test-DNA-connexions.html

 

Cost is $500 and you can have the results rushed and sent directly to you.

Link to post
Share on other sites
  • 2 weeks later...

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...