Opinions on Lyme and Parasites

[cara615]

Ok so when you do a lot of reading and reasearch you begin to get the "google syndrome" of "yep! that is me!!" But I need some opinions.

 

Here are my son's PANDAS symtoms in order of severeness:

 

TICS!!!

Emotional lability

Stomach aches

Mouthing things (fingers mostly)

Occasional headache

 

During an exacerbation we did see some ADHD and OCD but those behaviors have pretty much resolved at this point. I would say that for the most part its the TICS that are the biggest symptom with the others being pretty occasional and not consistent. The headaches are seldom at this point and they were never very frequent.

 

My son does not flare during a full moon. But what I did hear anecdotally was that mouthing objects is a clue to parasites? We had a comprehensive stool sample with no sign of parasites. I was told those stool samples rarely find the parasites because they are in the biofilm and the biofilm needs to be broken down. Is this true?

 

Do these symtoms sound like there may be Lyme co-infections or parasites?

 

i plan on doing all the tests to find out what is going on but I wanted to hear if any of you think that these symptoms may be indicative of other infections besides Strep.

 

Thanks so much!

[LNN]

It sounds like you're embracing the idea of exploring more than just strep as a trigger and I think that's great. My kids had multiple issues that needed to be addressed. But unfortunately, the symptoms you list can be caused by a number of things and you might be in that phase of information overload where you just don't know which way to turn.

 

It's made worse, in my opinion, on the FB pages. It's really hard to learn things in soundbites and my own FB experiences are that many parents have recently had an "aha" moment that explains a lot for their child and they end up coming across (again in soundbites) that their truth may be everyone's truth. I've been guilty of it too, but I think a forum like Latitudes gives you enough time to think through your answers and realize as you type that everyone's story may be a little different.

 

Just like your recent question about Lyme and Pandas - for some, parasites might be part of the story. But not for all. I've not heard of stool tests being unreliable due to biofilms. But SFMom may have better insight. She was once our resident poop-ologist.

 

If you were to trawl through the TS forum, I'm sure you'd come across a long list of tic triggers. Infection, EMFs, diet, mold, allergies, nutritional deficiencies, methylation bocks, fluorescent lights, etc. For my son (Pandas/lyme/pyroluria/mold/methylation), his tics show up when he's having trouble handling toxins - could be toxins from die-off or from mold. Even the tiniest source of mold can make him tic. We've tried dozens of supplements to help detox, none did. The only thing that helped was finding and eliminating the source of the toxin (getting rid of strep, lyme and mold).

 

I think there's merit in looking into any or all of these issues, but you need to be practical about it. I can't tell you how much money we put toward tests, supplements, treatments...so you need to be a wise consumer. Consider the most likely culprits first. It's so easy to get sucked into worrying about all of it. But you need to prioritize. If you live in the desert, lyme and mold probably aren't high on the list of suspects. If you live in New England in the center of lymelands and have a damp basement, then they're probably pretty good places to start. Make yourself a list of what you want to learn about, what the testing for that thing is, how much it costs, how reliable the test is, what the treatment is - and start with the easy stuff first. Otherwise, you'll be tying yourself into knots and going broke before you get to the bottom of things.

 

I would also use this site as the great resource library that it is. Search the archives. There's little the members haven't explored and discussed over the past decade. If you don't like the internal search feature, you can also go out to google and type your search words + ACN and find threads that way.

[cara615]

Awesome advice LLM and you can tell I am in info overload and its because I was recently added to all the FB groups! its too much! We see our new Dr on the 19th and I have a list of infections I want ds tested for. H.Pylori comes up first for me for a couple fo reasons. 1) ds was on prilosec for the 1st year of his life 2) he complains of stomach aches after he eats often. Then I would like to rule out myco and some of the other common infections. As for Lyme, I don't know how much the test is but I will consider it. I would like to rule it out. I don't think ds has it but I will admit that we love hiking and have been on many trails in the south in their short lives. We also summer on Long Island eavery year for 2 weeks and they have been to Fire Island. So who knows? It could be possible. Do I think he really has it? No because he doesn't have any classic symptoms. But like you said a lot of those folks on the FB group will pormise you that your kid has it even if 10 tests come back negative for it! lol

 

Again, thank you for your even handedness and sense of balance in all of this. I love this forum and everyone in it.

[ibcdbwc]

Thanks cara for posting questions like yours. It's such a muddy world and so difficult to manage. Back when we first started out classic PANDAS was fairly new and though most knew there were other triggers, the strep was the one that stuck. Swedo narrowed the criteria for validity reasons. But as a result, it left out a whole group of kids who had the same exact symptoms -but no strep. Truly heartbreaking. Like leaving them a float on an island and sailing away.

 

As time went on and classic PANDAS began to be more accepted, it opened the floodgates into pretty much everything and anything. I think even the PANDAS/PANS doctors now have trouble keeping up and sorting it all out. So it's much more muddy than it used to be -- but for good reason. Being inclusive rather than exclusive is a good thing - even though it drives all of us crazy in the process. Because yes, the search becomes endless.

 

I do know how you feel. I keep wondering: does classic (narrowly defined) PANDAS really even exist anymore and if so, what happens to those children? Do they all have to end up searching and digging deeper? or do any get treated with antibiotics/possibly IVIG and bingo - the end?

[LNN]

The Igenex lyme test is @$200. Some people will tell you to also test for co-infections ($660?). But since you're only trying to get a feel for it, I'd personally only do the basic for now. It's not that common to have only a co-infection like Bartonella w/o also having lyme. So I'd start with the cheaper test first, assuming your doctor will even agree to use Igenex. There are many flaws with all the tests, but with the time spent on LI, it's worth doing. You can look under the pinned threads at the top of the forum and see "helpful lyme discussions" - read those for some good background. We had a negative Western Blot but had 5 bands show + or indeterminate after one IVIG. But even tho lyme turned out to be a big part of our picture, and I do support testing for it, I don't think it's everyone's problem.

 

H Pyrlori makes sense and it's a test covered by insurance. Methylation (23andMe for $99) may also make sense as it can sometimes explain why GI issues and tics become problems.

 

But one trail at a time, or you'll drive yourself and your family nuts. As much as tics suck, they aren't fatal and you do have time to figure things out, even tho it doesn't feel that way right now.

[Hopeny]

Stonybrook has a fairly solid Lyme test and they take insurance. The key is to make sure report all bands is checked off, otherwise it's the same as the regular labs. Checking off report all bands ensures all the Lyme specific bands are reported. I don't think they test as many varieties as igenex but it certainly is a good option