New to all of this: lyme diagnosis, PANS?

[Vamom4]

Hi everyone. I am a mom of four and very new to this whole world of PANS/PANDAS/Lyme. After quite a few years with unexplained symptoms, we finally found a holistic DO who is currently testing my 9yo dd for lyme/co-infections/mold mycotoxins. The DO felt there is enough evidence clinically to begin abx treatment before receiving test results. I was a little overhwhelmed at the appointment, although we are not new to "thinking outside the box" in terms of treatments. DD has had quite a few tick bites (we are in central VA) and our previous home tested positive for high levels of several types of toxic mold.

 

I've been reading what I can on here and any advice would be very much appreciated!

 

A question: My dd has been an occasional bedwetter for years (recently maybe 1x every 2 weeks), but since beginning abx, this has become almost a nightly occurence. On several occasions, the volume has increased drastically. Is this common?

 

Second topic: (Wasn't sure whether to post twice? I'll just add here). My ds3's behavior changed seemingly overnight at the beginning of December. We had all had viruses and I didn't think to much of it until I finally took him to the ped in early January. Ear infection. Bad one. Since then, he has been on 3 rounds of abx. The ear infections keep returning. The weird thing is that his main symptom is his behavior change. He becomes defiant, cranky, whiny, uncooperative, downright mean....starts saying he hates everything and everyone. When he's on the abx, these symptoms go away. They return about 4-5 days after abx are done. Every time. Could is be PANS/PANDAS? I don't want to read into it just because of what I know now through researching for my dd, but if it is, I don't want to wait longer and have it get worse. I've just never seen this cycle of behavior with abx....strange. He also covers his ears and SCREAMS at all loud or even moderately loud sounds. This is new. (This has only been the 2nd ear infection and abx treatment in his life....normally very healthy.)

 

Any wisdom? And I'm glad to be here.

[bws1565]

I've heard of several people experiencing bedwetting as a herx, post antibiotic. Bedwetting is definitely a Lyme symptom.

[LNN]

I think you're right to pursue PANS for both kids. It sounds like your son's ear infection isn't being eradicated and he should probably be on antibiotics longer term - like a few months continuously. I know some docs hesitate to use abx for fear of resistance. But ironically, by only prescribing abx for 10 days and then re=prescribing a week or two later when symptoms return, they're contributing to resistance. The gap in treatment allows some of the bacteria to learn how to counteract that abx and teach that skill to it's offspring. So I'd advocate for a long course or better yet, a combo of abx. Different abx work by using different methods of action. So inhibit enzymes, some inhibit RNA, some inhibit DNA replication...if the bacteria as learned to survive against the abx you've been using, maybe add a second one that works in a different manner to prevent further resistance.

 

Yes, it's common to see a complete resolution of symptoms while on abx and have them return once the abx is stopped. It means you haven't gotten rid of the infection.

 

The bedwetting is also very common. It's theorized that one of the nerves that controls bladder contractions becomes inflamed and contracts more often than it should, including nighttime when it should normally be at rest.