Went to see a naturopath, getting tested for Lyme

[chubbermommy]

So DS' tics had been fluctuating despite being on antibiotics (amox), so his neurologist and the immunologist were both wondering if it could be something else besides PANDAS. He has been tested for strep many times but always negative since that first test. I took him to naturopath who is sending him for a Lyme and babesia test with Igenex (sending him meaning we are going to a lab to have his blood drawn). Now I am worried - what if he is negative for Lyme? Then what??

 

And while I am fully on board with natural remedies, some of the homeopathic stuff I'm a little skeptical about. I know for many on this forum, it really works, and I'm not doubting that. Since this whole PANDAS started, I'm skeptical about everything now.

 

At least there is someone now on the same page as I am.

 

ETA: She also gave us Biocidin to take after we do the blood draw. Anyone have experience with this antimicrobial?

Edited May 16, 2014 by chubbermommy

[mama2alex]

Why just Lyme and Babesia? Why not test for other coinfections? Also, please remember that a negative antibody test cannot rule out Lyme or coinfections by itself. My son and I both had a number of negative Igenex tests, but we both had many symptoms of Lyme & co and eventually tested positive on the Advanced Labs culture.

[SSS]

Have you tried any other antibiotic besides amoxicillin? Like Azithromycin?

 

We personally had no luck with homeopathic remedies- despite 2 excellent homeopaths to guide us. This was before we found PANS. Some homeopathic detox or drainage remedies we used later were good while on antibiotics, I thought, but constitutional and CEASE therapy got us nowhere. Probably because infections and inflammation was underneath.

 

I did some Biociden drops with my dd years ago- it was pretty powerful, as far as die off, and so strong tasting I had to mix it in a teaspoon of melted chocolate chips- it was before she could swallow capsules. It didn't give us relief personally, but I can't say for others-

 

I know how overwhelming and expensive Lyme and co infection testing is- but, it will always wonder at the back of your brain unless you rule it out, and don't see progress, I would think.

I really thought the whole Lyme infection was impossible for us, so sheltered we were and no history/ memories of ticks-

but it was very real.

Make sure you get copies of all your tests-

Edited May 16, 2014 by sss

[rowingmom]

In our case bartonella and mold / yeast toxins caused ticcing. Herxing with babesia die-off does not cause ticcing for DD. You might want to test for bartonella as well.

 

We are using low dose herbal anti-microbials now to address remaining infections with great results.

 

I agree about homeopathy - I just can't get comfortable with it. I have read several books on it including Amy Lansky's Impossible Cure, but my biologically trained mind can't make the switch.

 

Homeopathy and herbal treatments are very different things.

 

Homeopathy is energy medicine which uses the energetic imprint of a substance (diluted to zero concentration - so there is no substance left) to elicit a natural immune response.

 

Herbal medicine uses the multiple anti-microbial, anti-viral or immune supporting constituents of herbs to either act as natural antibiotics or natural immune modulators/boosters. This requires the use of actual whole herbs or herbal extracts and not the energetic imprints of them.

[LNN]

I too tried a few homeopathic remedies with no changes one way or the other and also struggle to wrap my science brain around. Yet I do respect those who feel it's been helpful and I have a lot of respect for the homeopath who shares a practice with our LLMD. I've never found any harm in trying it. (except for the $).

 

I was in your same boat - exhausted the strep treatments (abx, steroids, T&A, Plasmapheresis and IVIG) and finally relented and tested for lyme (which yielded 5 positive/indeterminate bands). So we did lyme treatment and again hit a wall. Then DS tested positive for KPU/pyroluria. Treatment moved him forward until he hit another wall. Deep sigh, lots of swearing, lots more eye rolling from DH, then found mold sensitivity. Got vigilant about that (without spending tons of money thankfully). DS progressed again. Got glasses for convergence insufficiency and made academic gains. Methylation supplements finally got us that elusive final recovery.

 

Gosh, i sound like a nut job with munchausens - or like maybe dx'ing issues was a hobby. Happy to say we seem to be "done" with our issues collection. But what I learned from all of it is that Pandas may actually be the final straw after a long period of teetering with other health issues. Or...it may be only the tip of the ice berg, making the body vulnerable to other insults. Chicken/egg question I suppose. But either way, having an autoimmune response to an infection and not being able to recovery entirely might mean there are other issues contributing. So it makes sense to test for other things.

 

So if he's negative for lyme, then what? Oh, don't worry - there's a long list of other things to look for!

[chubbermommy]

We are on day 4 of using the Biocidin - up to 4 drops, 2x a day. Would herxing start right away from using it? He seems worse today - more 'ticcing', although I can't really even call it that anymore. More like spazzing/seizure type arm jerking, slapping, kicking out, punching arms - and this is new - he seemed like he was trying to bite. I can't wait 4 weeks for our Lyme results!