JenniferG

I had Klaire 5 billion Vital Plex...Lactobacillis acidophilus, L. Rhamnous, Bifo. Gave her 20 billion.....tics an hour later. Maybe it's the amount and not the brand??

Thanks. I'll give it a try.

Would you mind telling me the name from Klarie? We use Woman's Health. Thanks

My dd11 is going through a bunch of things right now. MD said pull her off of everything for a week...constipation, nausea and mono. Let's give her belly a rest. Her tics are gone!! Added things in 1 by 1 and her probiotics are causing her tics. We need them! It is Kalire 25billion Lacto/Bifido. Too much? Wrong kind?

What is the consensus regarding if a child has an active infection? Or you don't know if its a flare or an infection? We did 1 IVIG a few years ago...coincidently she had C Diff and it is recommended if the ABX didn't work. After 1 IVIG the C Diff was gone, her "flare" got under control for about 3 days. We never did continue. She got more and more infections.....ear, yeast, h pylori. It's been a never ending battle. My fear is to start IVIG with an active infection. I would think it would help, not make matters worse. Right?? She has been home for lost 5 weeks from school, with what is a "viral" infection. Mono test positive. Doing EBV titers soon. She needs to function again.

What about long term flares? >2 years. Does IVIG help?

Hi My DD11 was confirmed rapid strep positive on Aug 500 from omnicef. Hasn't had confirmed in years. VERY painful. You could see her lymph nodes. Changed her to Azith 500. She couldn't tolerate it, vomitted. So down to 250mg. Sore throat went away, but L sided neck pain, sores inside L side of mouth only. Severe fatigue. Shaky, sweating/hot red cheek flashes, weak shaky legs, lost 3 lbs in a week and very hungry, nausea after she eats. Labs showed neg EBV, but Free T3 5.37 (2.0-4.40) pediatrician poo pooled it and told me to wait to talk to PANDAS MD. ALT 64 (10-50) ESR 4--nml and elevated Lymphs. Her last Azith was Friday. She actually seemed to be coming out of it. But yesterday yesterday she tanked again. I put her back on Azith until we speak to MD on Tues. She seems much better this pm. Her L side is still sore. Have you experienced Subacute Bacterial or Viral Thyroiditis? Does this sound like it?

Spoke to Pedi. He changed her to Azithromycin 500mg x5d. Gave her first dose and she vomited. Her belly is so sensitive. I will try to split them tomorrow. I ended up giving her charcoal so she would feel better. It was about 2.5 hours after the dosing. Do you think it will absorb it?

My dd11 had a T&A 5 years ago. And I think had 1 positive rapid strep since then. She has other ongoing issues....yeast, anxiety OCD. But this past week she complained of being very tired and having a sore throat. Neg rapid strep at Pedi on Wed. He started her on Augmentin 500 anyway. We stopped the Omnicef 600 she was on daily. Since then her throat pain is getting worse....on Motrin. She hasn't had a sore throat like this is years. No fever (but she never gets one). Never tests positive to throat cultures. Went back to Pedi Sat. She sad possibly viral..flu or mono. and to keep in touch this week. She has + neck and groin lymph nodes. This AM I decided to do a rapid strep test on her. It was positive. She has been on Augmentin for 6 days. How long on a new antibiotic should you see some pain relief or a negative swab? Thanks. Jen

emst- how's it going??

Has anyone tried it for low/normal cystine?

He just finished Flagyl for C Diff. Is now on Berberine, Acyclovir, Lysine, probiotics, Florastor, Fish oil. Would moving her the bedroom area to the finished basement area help at all?

So...if my mom lives with us and was positive 2.0+ for Mycoplasma and doesn't want to get treated...because she feels fine and has heart issues so treatment could mess with that......could my kiddos IgM be going up form exposure to her? AND, could that make them flare? AND now what? Kick my low income mother out?!?! UGH!

My sons Mycoplasma IgM is rising. Has risen significantly in 6mos. IGG <0.90. I don't understand why.

We are applying to a private school for next year. I have an appointment to meet with the Principal regarding my kids 504 plans. I would like to send her an article to read about PANDAS. Does anyone have one that is geared toward educators? TIA Jen

I am blown away. My ds7 just tested positive for C Diff. We have had several stool tests that showed elevated clostridia, but we were told it wasn't the C Diff. His last Stool Analysis showed 2+ Citrobacter Freundii complex, 2+ Citrobacter freundii complex isolate 2, 1+ Enterobacter Cloacae complex, and 2+ Klebsiella pneumonia sap pneumoniae...under imbalanced flora. 2+ Clostridium spa under Expected/Benefecial. The 4 list in Imbalanced are new. He had a huge increase in Lysozyme (an inflammatory marker) 2290.. <=600 is normal. His Secretory IgA is low at 28.1..normal 51-204. And few microscopic yeast. She started him on Diflucan for yeast. I am thinking that isn't good now. We don't want to kill any Sach B thats in there right? When we use probiotics he reacts....hyper.

What we were told was that usually around weeks 10-16 you begin to see cytokines drop. When we started I saw a huge improvement in a week. They had me increase the dose. They started to worsen (my kids react to everything). So we dropped the dose back down and have just recently started to go up. Slow is much better. My dd11 stool inflammatory markers have dropped. The boys have gone up. They don't think it's from the HDC. I do. So I dropped them back again. Typically 3-5 days after you dose you see a mini flare for a couple of days. My boys get hyper when they flare, so that's what happens on those days. My dd gets an increase in OCD/anxiety. Then it subsides for the remainder of the 2 weeks. They suggest Motrin and Bemadryl for these symptoms. I stick it out as much as I can. We are on week 20. I have seen a gradual improvement. Both boys had ear infections and I didn't even know!! Usually I can tell by their behavior....increase in OCD, anxiety and ADHD. That has happened twice. It is definitely on my list of things they will be on long term. Just like Fish Oil and probiotics. They are seeing remarkable results and there are a lot of studies being done for other autoimmune diseases.

We dose every 2 weeks. We are up to 10 for the 7 yo boys and 20 for my dd11. I put it in a small amount of milk and have them drink it. That's it! The easiest treatment so far in this horrible thing called PANDAS. You obviously can't be on antiparisitics. And we take OLE. So she has us stop for a few days. Feel free to ask any questions.

It is a parasite that used to live in us before we "cleaned up". It doesn't attach and grow and live in you. It lasts 2-3 weeks.....which is why you need to dose that often. I don't believe it is something you end/stop. From what I was told, it's a life long thing. TSO (pig whipworm) is VERY expensive. For a bit, I didn't understand why everyone was saying it was so expensive and I was paying $100 for 4 doses (with shipping from England). It is because we are doing HDC (larvae of a rodent tapeworm found in beetles). I know, I gag everytime I read it or say it. It is a clear liquid. You see NOTHING. It needs to be taken with a fat. So, I give it in a small amount of Chocolate Almond Milk. Honestly, you get to the point where you have tried EVERYTHING. and it's working. It's doing exactly what she said it would do.....if it continues I plan on making a big stink about how well my kids are doing and how everyone should try it. Especially, if you have gut issues.

We are on our 4th dose and are seeing positive improvements...small ones, but it is progress. Cytokines don't begin to come down until after 9 weeks, so we are very early....but there is A LOT of hope here!!!

Ordered today!! I will keep you posted.

www.biomerestoration.com Has anyone heard of this company/concept and/or tried it? It is sort of the same concept as probiotics, but instead of good bacteria, it's good parasites.

I had to pay a partial fee up front in case insurance did not cover. I haven't heard yet if they are going to cover.

I received one sons results. It does not say on the report ...highly likely, unlikey etc.. How do determine that? Dopamine D1: 4,000 (500-2000) Dopamine D2: not done...testing on back order Lysoganglioside: 160 (80-320) Tubulin:250(250-1000) CaM Kinase 167 (53-130) Thanks

Deedee--we saw results in a day or 2. At the time she was on Valtrex 1000mg 2xday