Beyond TBIs - whay do you know about ASD protocols?

[LNN]

We have an LLMD appt next week and I want to get my head around what else we need to look at for my DD6 and in what likely order. Note - this is kid #2 - not the kid I usually post about.

 

We have high CamK, high anti-neuronals, high C3a, wicked high C3d complexes, episodic, monthly OCD and anxiety spikes. GI issues and poor diet. Endoscope and poop test negative for H Pylori, neg for celiacs. Some lyme bands but does not clinically scream lyme.

 

We have negative strep titers, no physical evidence of strep, her OCD/anxiety had an immediate improvement when we started zith but no additional impact from bactrim. (She is allergic to amox family). She was treated with a bartonella protocol for 5 months with no change.

 

I can try to advocate for a different abx combo. But with gut issues, I hesitate. I kick around cefdinir, but it would have to be liquid due to her weight and DS, who is also on it, sucks up $200 a month for his script. Another $200 would really hurt. She is very taste sensitive. Herbal tinctures would be out of the question. We have explored mold but at this point it doesn't look like that is it. She has taken mimosa for parasites for 1 month with no change up or down.

 

So, what to look at next. I feel like the OCD madness is simmering. The zith and CBT keeps it mostly from boiling over but "it" is not gone. For 5 days a month, she becomes noticeably impaired from it. What makes the most logical sense in terms of next steps? Metals? KPU? Cyst-busting? Bio-film in the gut? If you chelate metals, does that also help with biofilms by robbing them of mortar? Is it possible there's lyme, held at bay either by her immune system and/or zith but then when bugs emerge from a biofilm to replicate, it's more than she can handle? She also spikes when she has a loose tooth. The added bacterial load seems to push it over the edge.

 

I know I will bring all of this up at our appt. In fact, this post was as much to help me sort my thoughts as anything. But is there anything I'm missing? Anything that stands out, especially to anyone who's familiar with ASD theories/treatments?

[MichaelTampa]

Yes, I do think chelating helps with biofilms, but also works better if treating biofilms, so things for biofilms and heavy metals can work well together. I had very good results from cistus incanus tea (biofilm) and serrapeptase enzymes (biofilm) with detoxamin suppositories (EDTA for chelation).

[philamom]

Not the question you're asking - but it still sounds like Bartonella to me. I just read an article where a person with Bart was having monthly cycles of OCD (one week a month if I recall). Also, could be the reason for the GI issues. All my daughter's stomach problems & gerd went away when we started treatment with Tindamax for Lyme & Bart. We still have the poor diet though.

 

I would also run a standard c-diff and giardia lab test. That has caused us problems in the past.

 

Sorry, not really helpful. Good luck at your appointment.

Edited August 18, 2011 by philamom

[momaine]

So at this point you have done nothing to treat possible cysts? I would think trying Tindamax might be a next logical step or treating more aggresively for Bartonellla which often tests negative due to insensitive testing, as I'm sure you know. The OCD/anxiety could be a result of Bart.

 

One things I've read and experienced about Bart is that it reacts quickly to antibiotics. I felt better quickly when starting antibiotics and feel worse immediately when I skip them.

Edited August 18, 2011 by momaine

[LNN]

I think LLMD believes there's an infection he's just not sure what. No, we haven't done cyst busting. He doesn't seem convinced there's lyme and I don't believe bart requires cyst busting. Not sure. She doesn't have any symptoms of c-diff or giardia and we did a comprehensive stool analysis that came up all normal.

 

Metals remains on the table. So does Bartonella. So does biofilms in my mind.

 

DH and I discussed taking her off zith to see what happened, but then this week has been mid-month and she's spiking, so not the time to mess with anything. Her appt is next Thurs, so maybe I'll get brave and drop the zith this Sun. to see what happens. If she does decline, at least I can get perverse enjoyment from letting him see her at her worst, instead of sitting in his office describing a lunatic while my quiet, charming daughter sits next to me. Trouble is, her behaviors are internalized. She'll clam up, try to crawl back into the womb, act very shy. He won't see the she-devil wrath she can unload in private. You all know what I'm talking about, but I'm not sure he does.

 

Thanks for the input. Any other ideas before next Thur always welcome!

[NancyD]

I would also opt for cyst buster before going the route of chelation and biofilms. I agree that this does seem a lot like Bartonella. I know you are giving healthy doses of probiotics. Is she completely dye-free with food, toothpaste, medication? I find this makes a HUGE difference in minimizing OCD and aggressive, dysregulated behavior.