JenniferG

DD had a real ramp up of ticcing with GSE, perhaps because of it's action as a cytochrome P450 inhibitor, and the resulting increase in toxin load. She also showed increased ticcing with yeast infection.
 
I have been able to keep yeast at bay with 75 billion mixed probiotic cultures daily (we use a rotated combination of Culturelle, Align and RenNewLife Ultimate Flora) as well as cultured vegetables daily.
 
We haven't stopped herbal antimicrobial treatment. Although we are not specifically treating for viral infection, there is probably viral coverage in the herbs we are using. I just dose probiotics away from antimicrobials.
 
We are on a low sugar but not low carb diet. Our carbs come from fermented oatmeal, sweet potatoes, carrots, squash etc.

A LOT. I started a week before (recommended by other parents here and RN at MD office). My dd was 8 at the time and around 50lbs. We always had a bottle of water with us where ever we went. I counted. I made sure she drank at LEAST 8-8oz cups a day of water. Anything else was a bonus. And during too. She had no post IVIG symptoms. None.

In Feb 2012 DD had a huge increase in motor/vocal ticcing with low dose GSE (2 drops daily on the toothbrush for 5 days) suggested by the LLMD to address plaque formation on her teeth. It was horrible. She had trouble both speaking and reading because of the eye rolling, head jerking and vocals. It took weeks of increased dosages of curcumin and japanese knotweed (anti-inflammatories) to resolve. For DD ticcing caused by GSE was worse than the ticcing caused by tindamax.
 
The LLMD thought it might be yeast die-off; Stephen Buhner's herbalist associate thought GSE may have been causing inactivation of cytochrome P450, decreasing the liver's ability to metabolize existing toxins.
 
http://en.wikipedia.org/wiki/Grapefruit_juice
 
In Feb of this year DD was again starting to show signs of ticcing with higher doses of herbs used in Buhner's bartonella/babesia protocols. Two days later she developed a yeast infection. Not realizing that herbs could have a significant impact on gut flora I had stopped probiotic supplementation, using only fermented vegetables to supply microflora.
 
I increased probiotics for a couple of days, but this did nothing for the ticcing or yeast infection. I finally relented and gave her a single oral dose of diflucan. The yeast and ticcing were both gone within 2 days, with no yeast die-off- related increase in ticcing symptoms.
 
I now have to agree with the herbalist - that GSE had somehow impared DD's ability to excrete toxins, thereby increasing ticcing. I saw no increase in ticcing associated with diflucan induced yeast die-off, or any other symptoms for that matter. The ticcing simply disappeared to zero along with the dark red circles under her eyes.
 
I have since reinstated the full probiotic supplementation protocols we were using while on abx treatment.
 
Ticcing has remained at zero, except for a couple weeks in March, where (after reading a post by LLM on black mold around windows caused ticcing in her son), I discovered mold around DD's bedroom windows. A good cleaning with vinegar resolved all ticcing once again.

Found the article!
 
http://www.wired.com/2014/04/how-flesh-eating-strep-bacteria-evolved/?mbid=social_fb

We have used both olive leaf extract and monolaurin (the active ingredient in coconut oil without all the fat) as antibacterials/antivirals, but only as prophylactic measures, not as treatment. I'm not sure you could successfully ingest them in sufficient quantities to be effective treatment against infection or virus.
 
We didn't see any negative impacts on DS's gut, but then he did pretty well through treatment abx with sufficient probiotics and an occasional bentonite clay treatment. Things were a little rough at first (diarrhea), but his body seemed to regulate to the abx after a couple of weeks, and it went okay after that.

We use Lauricidin as antiviral....heard coconut oil can do the same as it is a deriviative.....However both can cause loose BM's...so it is best to start slow. I don't think they have the same effect as regular abx, esp broad spectrum abx such as zithromax, as it pertains to killing good gut bacteria. Worst Pandas kiddo is on PenVK due to tics at strep exposure and really sensitive to strep when it is in the home or school. We continue with probiotics daily and only add sacchromyces boullardi when we have to use zithromax.
 
I am not sure how much it helps. I will say it...or the whole cocktail of natural stuff we do, this was the best year we had house wide pushing back on EBV, Strep, Myco and colds and all the behaviors. Additionally....... We do have a sick protocol when colds come with Zinc and Vit C and we(I) really see value in these cheap supplements when colds come. I personally kick colds in less than 2-3 days if I hit it early with Zinc anc Vit C. Kids also take vit A drops during the sick protocol.
 
Let me know if you have any questions. Hope this helps!!!!

Just a thought, but have their iron levels been checked? I'm just wondering if antibiotics will miss with these levels. When my son was anemic 2 years ago, I could not hardly get him to eat. It was bad but once the iron levels were there, it was much easier.

I agree with Hopeny. Dr. Szackas is amazing.

I live in Westchester county too. I would highly recommend dr nancy O'Hara in Wilton, ct. She works closely with dr b, and is not too far away about 30 minutes for me. She covers pans and immune illnesses. If your friend would like to speak by phone she can pm me. My pediatric group is open to pans/pandas and is in white plains.

It depends on what you're looking for in a doctor. They are very different people with very different mind sets and treatment options. Since you've been on the lyme trail for so long, you've obviously done all sorts of abx combinations and supplements. So I'm not sure what else Dr T could offer that your LLMDs haven't offered already. Dr B could offer IVIG if that's the direction you feel you want to follow. Dr B is certainly staffed better but I understand that his staff plays quite a gatekeeping role and getting in contact with him personally can be just as frustrating as trying to contact Dr T.
 
To throw a monkey wrench into things, I'll toss out a third name for you to consider - Dr. O in CT. (Or Dr M in CT if you're looking for an LLMD who has a number of Pandas/lyme patients). The reason I'd recommend Dr O is that she comes from the autism world and she takes a whole body/support approach. Whereas Dr T is focused on the causation and Dr B is focused on suppressing the immune response, Dr O seems focused on supporting the things that have gone wrong in the system so that the body can play a major role in healing itself. It's a strategy we followed with Dr M with great success. The reason I say Dr O first is that it seems you may be looking for someone who is not an LLMD, but both of them believe in integrative approaches.
 
I don't mean to dis either Dr B or Dr T but given your backstory, I had to put Dr O's name out there for your consideration. You can PM me if you want contact info, or if others who see her chime in, they can probably give you better details.

To all of you incredible, dedicated, strong, kind, supportive and fierce women and mother's on this forum I say "You Rock!"
 
On this day, the tv ads and magazines and stores everywhere want to show us opening boxes to find heart-shaped diamond necklaces, smiling in our robes and opening cards. Many of us, not only on this forum, are just not those Moms. Those ads can remind us of what we don't have, or they can remind us of what really matters.
 
Our Mother's Day wish is simple; to look into the eyes of our children and see happiness. That's it. That gift to us may have come as a temporary reprieve last week on a 'good day' or it may come tomorrow or next month.
 
For me, today, on Mother's Day, I rejoice in the gift of my imperfect life that looks nothing like those ads. I rejoice in the gift of my imperfect child. I rejoice in all of you while we struggle together, fighting for what really matters.
 
Happy Mother's Day.
 
Heather