susie

For probiotics, VSL3 DS packets are a prescription only probiotic, so our insurance covers them. Each packet has 900 billion organisms and they come in a box of 20 packets. Our M.D. wrote for 1 packet/day and insurance would only pay for 1 box at a time. We got the doc to write for 2 packets/day and now we get 3 boxes per month. If it works for you and insurance covers it, it's the best price for the potency. I don't believe that they are a human derived probiotic strain like the Pharmax/Genestra products and Theralac though. I like the human derived ones the best, but they are so very expensive.

My daughter get nausea/queasiness from the tindamax. I started putting some ginger powder in an empty capsule and give one with each tindamax dose. It seems to help some.

For me, the doxy will do that if I don't have enough food in my stomach. An apple alone isn't enough (I found out), but an apple and some yogurt or protein is.

We do not have any personal experience with her just heard thru a Lyme organization in Oregon that she is good with kids. Also, saw on her website that she uses the Marshal protocol which there has been some discussion on this forum about its' effectiveness. We were going to go to her until we got in to see a Dr. in Klinghardt's office. On one of his on-line discussions, he states that the Marshal protocol does not always work. The workers at our local Vitamin Life store seem to know who she is as well. Will ask them next time I go in (soon) and see if they know anything else. On another note, we stepped away from our PANDA dr. (we still see her bi-monthly) who we absolutely love and it was the best decision we could have made since ds was not progressing at all (that we could see) under her care. Julia Faith, I was just looking at her website to see what she said about the Marshall Protocol. All I could find was an article about vitamin D and how important it is to get enough and it also talked about using huge doses of vitamin D. Do you know where on her website she talks about the Marshall Protocol? This makes me nervous too. I have an appointment with her next week for my DD. I can't imagine how I could possibly keep my daughter out of the sun all summer (even if I did think it might help).

I'm curious how often the protocol is changed. My daughter has been on Azithromycin for about 6 weeks now. She's also on Augmentin and has been for months for PANDAS. I've tried stopping the Augmentin a couple of times and had backward sliding both times. What seems to have really helped the most though is the tinidazole on the weekends. It's tough on her tummy, but it seems to be helping a lot. So, my question is, when should we be rotating antibiotics? We're getting ready to go see a new Lyme doctor next week. I really like our current doctor, buy I'm afraid he doesn't have enough experience (I've stumped him too many times with my questions). Thanks!

I know the reason we don't use cholestyramine for my DD is that we don't want to lower her cholesterol since it is important to brain function. I'm guessing in your DD the concern would be the same.

Thanks Micheal. I didn't realize they weren't going to make them anymore. I'll stock up too. Also, don't forget about the mercury. See this story: http://www.npr.org/templates/story/story.php?storyId=7431198 Doesn't seem like a very environmentally friendly alternative to me. I just simply leave lights off most of the time, and at night I usually only have a light on in the room I'm using. I see my neighbors houses at night lit up like a Christmas tree and wonder if someone is really in all those rooms.

I hope someone can give me some thoughts on our situation. My daughter had been on Augmentin 500gm twice daily for about the past 6 months (for PANDAS) up until 5 days ago. We determined Lyme about 2 months ago and added Zitromax and after she was stable on that, added tinidazole on the weekends. The LLMD wanted to stop the Augmentin when starting the Zithromax, but I kept it going so I would be a able to know whether any problems were related to stopping Augmentin, or starting Zithromax and tinidazole. I stopped the Augmentin this past Friday when it was time to start the weekend tinidazole, so it's been 5 days now that she has been off of it. It seems she's slipping backward now. The PANDAS doc wants to resume the Augmentin, but I'm worried about DDs tummy. Her stool culture grew candida for the first time ever and also had some inflammatory markers (Alpha anti-chymotrypsin) elevated for the first time. She's on probiotics, oral Amphotericin and Sacro-B for the yeast. I don't know what to do. I just read someones post saying that Dr. J had their child on Augmentin, Zitromax and a cyst buster. Are 3 antibiotics at one time needed to treat Lyme? I understand that they each cover a different form of the bug, but are most people doing all 3 at once? Have many of you continued on multiple antibiotics even with positive candida? To top it off, our LLMD is out of town for all of February. I'm going to call the doctor covering for him, but he doesn't know my daughter at all. This is SO stressful! I sincerely appreciate any input. Thanks so much.

I used to hide all sorts of nasty stuff in lemonade sweetened with stevia. Also, if you put it in a shot glass and have him plug his nose and chug it that may help. I give my daughter xylitol sweetened lollipops for rewards sometimes, so that might work for you. Good luck.

My daughter is on tinidazole for 2 of every 7 days. I give it with food, but she is having a hard time with it. For those 2 days, and perhaps the first day off, she complains of a tummy ache and wants to eat all day long. She says she's hungry, but I tend to think that the food just settles her stomach. She's also getting probiotics and Sacro-B. Is anyone else having this trouble with tinidazole or metronidazole? Any suggestions? Thanks so much.

So I started doxycylcline yesterday morning for suspected Lyme, with plans to do a Western Blot through Igenex after a few weeks on the doxy. This morning in the shower, for about 20 seconds or so I was seeing wiggly spirochete shaped floaters in my eyes. They weren't dark in color, but were lit up as if they were lights themselves. If I closed my eyes, they went away. After about 20 or 30 seconds it stopped. I know the lyme spirochete is much too small to see, so I'm really having a hard time figuring this out. And no, I don't have a history of any sort of hallucinations. The only other symptom I've had since starting the doxy is a mild headache and a real lack of patience. I'm usually a calm and collected driver, but this morning I felt like ramming the car in front of me who was going too slow (didn't do it of course). Anyone else have these or any other type of wierd floater? I'm calling the doctor on Monday unless it happens again, then I'll page him tomorrow.

So you still detox even if you don't sweat? I thought the heavy metals and toxins came out in the sweat? It would be great for us if it worked without the sweat, because my daughter doesn't sweat much the few times we used a far infrared sauna at the doctors office.

Thanks for posting this. Where did you find this? Our doctor has not mentioned parasites at all, so I would like to discuss this it him, but would like to learn more first. Thanks

My daughter's Igenex results came back with band 31 indeterminate, and was later confirmed positive with the epitope test. Band 41 also positive. Bartonella antibody test and FISH test negative. Babesia was "slightly" positive at 1:20 (normal is less than 1:20 so it was very borderline). Erlichia negative antibody tests. CD57=26 The LLMD doesn't think that we need to worry about the "slightly" positive Babesia, just treat the Lyme. We're starting with zitromax and will add a cyst buster later. Should I quit worrying about the Babesia? Then there's my own WB through LabCorp. I had a positive IgM band 23. Everything else negative. He wants to test me through Igenex too. Does that sound reasonable? I know 23 is a species specific band, so I'm trying to figure out why it's a negative overall result. Does it not show that the Lyme bacteria is present? I really appreciate every thing I learn on this forum. I would never have gotten this far without all of you. Thanks so much!

My Pandas dd6 is coming down with cold symptoms. Someone (I think maybe it was Stephanie2) provided a great link to an article with a list of supplements to give at first signs of illness. I bookmarked that link, but of course now I can't find it when I need it. I remember vitamin D was on the list, and elderberry extract I think. Can anyone help me find it? I Don't want an exacerbation to start. Thanks a million. Susie

So was it just the alkaline phosphatase that was elevated? If so, they can run a test called alkaline phosphatase isoenzymes to see if the elevation is coming from the bone or somewhere else. My daughter had an alk. phos of 4,410 once (normal range=100-400). They did the isoenzymes and determined that it was coming from bone. They said it was very unusual to see one that high, except with a broken bone or bone disease. But, they were certain that her liver was OK. Never did figure out why it shot up so high, and it came back down over about 6 weeks back to normal.

I do know that prolonged, heavy physical exertion like running a marathon can decrease immune function very significantly. Moderate exercise is supposed to be beneficial to the immune system. I'm just wondering if in a pandas kid who is exhausted by running a mile, if a mile is like a marathon to her body? I would be worried about it too.

Yes, my pandas dd6 stands on her head on the couch quite a bit. Even now, when most of her pandas symptoms are resolved she still spends a lot of time upside down.

I wash our toothbrushes in the dishwasher. This should work, right?

My 6 year old daughter's CamK was 179, and the only ANA elevation was anti-dopamine 1. My daughter's Pandas seems on the mild side compared to some that I've read. Her main symptoms have been tics, some OCD and irritability.

Hi, I just wanted to clarify that Brewer's yeast and Saccharomyces boulardii are not the same thing. I have read that Brewer's yeast can make yeast infections worse- see under the precautions section in this link to U of Maryland Medical Center's article on brewer's yeast. http://www.umm.edu/altmed/articles/brewers-yeast-000288.htm S. boulardii is a non-pathogenic yeast that is supposed crowd out candida, then die off itself. It is considered a probiotic. I think the confusion lies in the fact that the two are related, but definately not the same. Hope this helps. Susie

Stephanie, What dose of OLE are people using? I've been using it for my daughter for several weeks now. She's also on full strength Augmentin, so I don't really know if it's helping, but I figured it would at least be helpful for gut pathogens. Dr. T. mentioned it to me to stimulate the immune system, but we didn't talk about a dose. I give my daughter 1 cap (gaia brand) twice daily. Susie

surfcity, You can order ASO and Anti-DNAse B yourself through MyMedlab.com: https://www.mymedlab.com/products/search?q=strep. You'll have to see if it's available where you live (not sure about NY,NJ,and some of the eastern states) Hope this helps. Susie

I bought some hand sanitizer called prefenz. It's supposed to last on your hands for 24 hours or up to 10 handwashings. I have a hard time believing it lasts so long, but I bought some anyway. http://www.prefenzbotanicals.com

We use Custom probiotics 4 strain (2 lacto, 2 bifido) 400 billion CFUs spaced as far from antibiotics as possible. My daughter is 45 lbs. We have seen no "die off". we get it at : www.customprobiotics.com