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*Hi. No, mold is not an issue for all Lyme patients. If I was starting to question whether mold is an issue for my family, I would order the ERMI test (google) it is a simple kit you buy online, they send out, collect either vacuum or floor samples, send back to lab, and you get a detailed report and graph/rating system for particular molds that may be in your home. If the report comes back unhealthy high, next step would be a mold inspection. 'Shoemaker' (google and mold) seems to be taken as the genius of mold, and if you want to get way into it, he has books and website.

I have heard some pandas moms say before HBOT was not good for their pandas child- no personal experience here. As far as the different methods of treating Lyme, this is a big topic. There is a lot to learn, and what works best for some, may not work so well as others. On my personal Lyme journey, I spent the first 7 months on different herbal tinctures, some antibiotic combinations, a lot of time (and money) spent on the mold issue and detoxing that, and some parasite protocols. We recently switched LLMD's, and now I am more on a 'Burrascano' plan- he being the 'Godfather' of Lyme, and his latest 2008 Lyme Disease guidelines are respected, often consulted and used, and seems to be ringing true for me at this time. Just need to get going on his exercise program, lol. I can't predict my treatment future, but I learn more about myself and this disease as I progress in treatment- like you will as the parent. I do know IV antibiotics are out for me- I do not want a port or pic line, near impossible to get insurance cover, and I have 3 kids and a husband that seem to depend on me- I don't have the time. Others do this route, and it will be amazing for them. I probably will start Billicin injections 2x a week soon, tho. So, all that to say- it's a good idea to maybe pick up some different Lyme books, try to learn what you can...your LLMD will guide you, make suggestions, but it is a good idea to learn yourself, so you can ask the right questions. It is an expensive, rather short appointment, make the best of it. and as you travel through, more will be revealed to you.

B vitamins are water soluble, so if there is an excess, can turn the urine a brighter yellow, if that is what you mean.

I just realized I made the same post twice on this thread on different days. Yikes, and sorry. I have heard (on here) of another LLMD saying Doxy was okay for kids- so, I don't really know, and didn't mean to freak you out with my story. And Kara: Awesome :-)

When I started treatment, I was on Doxy 400 mg a day (and another antibiotic) My very adult teeth (good shape, never an amalgam) started to stain black (!) at the gum line on all my back molars. Ick, and a little freaky. My dentist was able to blast it off, thank goodness. Our LLMD's have never suggested Doxy for my daughter, now almost 7.

I know this one, lol. Lifeway is one of the only I could find that does NOT contain the strep strain- the kefir drinks you refer too--

**I did decide myself, after many blood, urine, stool, Zyto, and muscle testing at one point, 1 well know DAN! Dr. (no, she does not have autism) 2 LLMD's, bio-med books, Lyme books, and thousands of dollars spent on trial and error, reading parental testimonies, and reading for hours research on the Internet. Kept trying. I would like to think it all helped somewhat. She does remarkably well in school, which I'm very grateful. I am on many more supplements than my dd right now, trying to get better with only 7 months into it, having ignored myself for years.

Hi- I do use the Burbur and parsley drops every day and also milk thistle daily. 10 drops of each, together, tiny water, suck it up into oral syringe, quick in her mouth with drink chase.

Just wanted to add: We have done previous years of supplementation- lots. I did bio-med w/dd for 2 years before pandas dx and antibiotics- We did diet, healing the gut, lots of vitamins, parasite protocols, curcumin protocols, on and on. So my list seems spare.

3 antibiotic pills, PS 100. Syringe of gentle drainage, syringe of Burbur and Parsley drops, final syringe of lipo glutathione, D drops, B-12 drops, RNA drops for methyl. A1298C double gene, and heaps of custom probiotics 11 strain. Shot of ibuprofen usually. After school, .5 of Clonidine, 2 multi vitamins, milk thistle, Theralac probiotic. Dinner: 3 antibiotic pills. Our schedule changes frequently, this is where dd is at right now- I have scaled it down.

Hi- If you want to test for Lyme after the IVIG, it is best to wait a full 2-3 months after the IVIG infusion, when all the donor antibodies have left the body... Best wishes.

We also used our local Coram for 2 IVIG's, saved a lot of money, and very pleased with their service. They tripled checked everything with our prescribing Dr. and put up with my anxiety filled interrogation through the process ;-) And to be able to drive dd back home to her own bed was very helpful.

There is Dr. Dan Rossingal - well known DAN! I believe he still has an office in Melbourne FLA. You could call and vet them out about their PANS treatment.

My first thought upon reading the post was: What about Lyme, have you treated for that? Usually bartonella travels side by side with borrelia infection (Lyme.)

These thoughts to myself is what helped procrastinate Lyme testing: 'No way we have Lyme, never been camping, never owned a pet, she's been sheltered...' It just sounded so far out to me. And, we are not near deer infested areas- suburan living. A little voice did nag me about it. And always reading about it on the pandas board (lol.) So just finally did a test. And here we are. May not be this way for you. Could just rule it out for peace of mind.

You've gotten awesome replies on both sides, so I will throw in my minor .02 cents: Your tick bite histories scare me. My experience with Lyme testing my dd, after pandas strep/autoimmune treatments not holding- (she had positive bands 23, 18, 41's, 30-34, etc. on her different tests, although not one said 'YES' but so many Lyme only bands present) It was like an anchor dropped on my head, I was so floored. And then I studied it, become real honest with myself reading the symptoms, and I knew I had it, too. Found LLMD to look at all of dd's tests, and to get my own testing. Tested Igenex, blood PCR positive Lyme, and positive bartonella titers. And I have no memory of tick bite. If you want my opinion, I'd say make an appointment with one of the LLMD's right away, bring all your testing, history, and hear the evaluation_ the ultimate opinion on yes or no. And if yes, then one of very few that will know how to treat it effectively.

Oh Julia, I am sorry. Good news is your husband may feel better than he has in years-

I totally agree that it is individual (strep strain reactions.) Before this whole PANDAS/PANS/Lyme thing started, I was feeding dd (4 years old at the time) coconut yogurts with the strep strain probiotic- and I certainly did see an uptick. Now, I feed her yogurt and I don't see it. But I am not prepared to give her probiotics with the strep strain. Honestly, I don't know where she is with strep- never high titers, no positive culture in 4 years- Was it a co-infection? Does it sit somewhere in the body, lurking? Because I know it was there. Whatever, I am afraid to provoke. Could just be my own paranoia.

Here are the ones we use. I look for high quality, high count, and I don't use any on dd with the strep strain, but do for myself, strep strain doesn't affect me. Custom probiotics 11 strain (powder- I blast a syringe with heapings of this every morning 2+ hours away from her antibiotics) Culterelle - I hear it is good to combat c. diff., and because she seems to react to sacc. B (florastar) I use this instead, and then later in the day, either Theralac or Klaire Detox probiotic. I blast my dd with them- as she is on antibiotics 2x a day, and we have had gut issues before. Me, I take VSL capsules (strep strain, but super high count) and some of the above. I have also used some Kirkman probiotics that I liked and were good quality (not Kirkland, the Costco brand.)

Sorry, also wanted to add I hear Tindamax can be really rough, but can produce some nice gains. I did maybe 4 weekends of it with dd before stopping- at the end she pulled out of a severe clothing OCD issue- Might be related, not sure, but I do hear of gains with it.

Yes, Tindamax and Flagyl are prescribed for children- espeically Flagyl since it also hits C-diff. and parasites. We tried Tindimax with dd earlier- pulse- yikes! Rough. Shelved it, working on more Lyme right now. By the way, our Dr. called me to confirm dd's Amoxicillian dose- it is 2,000 a day. It is a high dose Amoxicillian protocol- he quoted Burrascano guidelines-saying adults 4,000 a day.

Band 23 positive- and band 41 positive- along with the clear present symptoms (and I'm sorry your child is going through this) Many LLMD's would consider this a clear case of Lyme. You may have to go that route for proper treatment. My .02 cents.

I was on plaquenil (not my dd) for 2 months, along with 2 other antibiotics. Very interesting information in previous post-- I had none of the 'side affects' but it was a hard 2 months. For cyst busting, I am going to ask for Tindi or Flagyl for dd and I. (oh joy)

I'm sorry Kara. I am sure you wanted to be done. You've done a lot. I am glad things are improving.

Thanks for sharing, momcap, all very interesting for me to read. Dd has been on Amoxicillin now for 4 days, along with Biaxin for the last 4 days. I tell you what: she is clearer, telling stories with great humor and laughing- happier periods of time. (Along with spells/episodes of die off. Shorter, but it's there, stressful, but it's that way, anyway.) Every time I see a direct, significant reaction from antibiotics, it still strikes me. I think I'll put a call/quick message to our new Dr. and double check what he says...