NancyD

Sheila, do have another link to the petition? The link you have here is the same ABC article. Thanks for posting this.

I buy all organic spices and they are both gluten and MSG free. When I am in doubt I always google a specific product to make sure it's GF.

The ONLY food I have not been able to find a suitable replacement for is bread. My DD is really picky about her bread. Any GREAT GF breads out there? I know about Udi's. Any others? I would even ship it in if I can't find it locally!

It's hard to know the source of MSG ... It could be from corn, beets, molasses, or wheat. Regardless, I steer clear of any MSG in foods, and any additives in general. Too many people react to it. I have gotten very sick from MSG. I try to make everything from scratch and use mostly organic food. A good gluten-free organic pasta my DD and I like is by Bionaturae. It's made in Italy and contains organic rice flour, rice starch, potato starch, and soy. You can buy this in Whole Foods or other stores I'm sure. They make all types of pasta: spaghetti, penne, fusilli, rigatoni, elbow, linguine, etc. I don't find it difficult being gluten and MSG free. I always read labels and stay away from canned and processed foods. We especially stay clear of any artificial dyes and titanium dioxide ... even in skin care products.

I have had GREAT success having a case manager with two different insurance companies. We got many things approved that I never thought we would and it was quick. It's so much easier dealing with one person who knows your situation. Just remember, everything you say is recorded so be careful.

Was it a push or drip? My DD could not tolerate a push but did ok with a drip.

We are using the same Artemisinin -- from Hopkinton. Good to know you had such great results from that. I really hope we do too! Even though it's awful seeing my DD go through the regressions, I do feel like she's herxing from the A-Bart and I know it's only temporary. It's comforting to know what we thought were symptoms from early diagnosed ASD were really due to Lyme/Bart/PANS (and maybe Babesia). I am seeing much more herxing and better results by adding in the anti-microbials. After I finished treating my Lyme/Bart two years ago I tried the A-Bart challenge and had no reaction whatsoever and I got up to 20 drops BID.

My DD has been on A-Bart for about 2 mos and we are seeing some really bizarre things, including paranoia, regression in development (many years!), working memory loss, etc. We are now up to 13 drops twice a day but it's taken us quite a while to get there. I first tried her on A-Bart in April as a challenge and she almost ended up in the ER after 1 drop. I suggest you take it very slowly. We tried MC-Bar-1 a few months ago and the rages were so bad we had to stop. We'll try it again soon -- hoping she'll do better now that she's at top dose with Cumanda and Samento, in addition to Rifampin/Mino. We also have to start arteminisin soon. Did you have much herxing with that?

My brother, now 58, was dx with Sydenham's Chorea as a very young child and was put on penicillin for a long period of time. I remember he had one or two tics. We had an incredible pediatrician who was researching strep back then. My brother has been healthy ever since -- with no residual problems.

Are you using dye-free ibuprofen? My DD gets violent with artificial dyes -- particularly red and blue -- as they cross the BBB quickly.

Mino is used to target Bart and Lyme, Rifampin for Bart and PANDAS.

Isn't your DD being treated for Bart? How about you? Bart headaches can be awful! Mine were worse in middle of the night. Lyme treatment didn't help the headaches but Bart treatment did.

The last time DD had c-diff she was on GSE and a nasal atomizer that included Topramycin, vancomycin, amphotericin B, and betamethasone. We did the tests ~ two months apart. Yes, the second one came back negative. That's what I thought. The doctor suggested 4 weeks a Flagyl and then test two weeks after that. That doesn't seem like long enough. How did you treat the c. diff? Did the re-test come back negative?

It's been a while but I think we re-tested with Metametrix after two or three months.

Trinity, my DD found the spect scan to be MUCH easier than EEG. She always had a rough time with EEG and she's done a few. She was not sedated for the spect and she was not off any meds. She was sedated however for MRIs when she was young. Perhaps they can sedate her for the spect? Ask the doctor. We had to go to NYU for the spect, though it was outpatient. I don't know how many places have a spect scan. I would try to stay there if at all possible. Wishing you lots of luck? Let us know how it goes.

We've tried it twice -- last year and several years ago. It never helped DD with anxiety or anything else.

I've been happy with BCBSMA PPO. DD has been on many abx over the years for PANDAS, Lyme, Bart, MycoP, etc. and they have never questioned any (i.e., Augmentin XR, Azith, Tindamax, Doxy, Rifampin, Mino, Biaxin, etc.).

Trinity, it's not unusual for steroids to cause that kind of reaction with Lyme disease or co-infections. Are you using Motrin with artificial dyes? Any artificial dye, including titanium dioxide, will turn my daughter into Satan!! She is so sensitive we have to check toothpaste, gum, body lotion, shampoo, everything -- not just medication and food. Their BBBs are breached -- artificial dyes and additives can cross the BBB very quickly and cause these types of reactions.

You could try: Combo of magnesium and taurine Valerian root Epsom salts baths

He suggested that my DD try Lutiforce, which has luteolin bioflavonoid in it. This is to replace ibuprofen.

The ONLY time I found ALA to be noticeably helpful for DD was when it followed DMSA several years ago. We tried it alone this past year but I did not notice it was helpful at all and when DD came back CBS positive and it tested negative in ART I decided to drop it.

I use Curcumin C3 Plus by Ancient Formulas and buy it from directly from Bock's office. But you can probably get it online. I give DD 500 mg BID but we started off with 250 mg BID.

We tried Lutiforce for a few days but since it is supposed to be taken 30-60 min before eating DD was refusing it. I plan to try it again soon.

DD has had great success with oral Ampho B in the past couple years. Far fewer problems in oral form. Diflucan was my preference but it kept elevating DD's liver function. Nystatin never helped.

Give Ibuprofen rather than Tylenol. Tylenol lowers glutathione levels so you don't want to do that. Our kids have a difficult enough time detoxing. Diflucan is really effective with yeast but it can elevate liver function so you have to be really careful with that. You'll need to check liver frequently. Amphotericin B rarely effects the liver.