NancyD

I second this recommendation. Both EXCELLENT GI specialists! We see Tim Buie, who is in the Boston area, but I also really like Arthur Krigsman, who Is in NY.

Sorry, I don't know if MDs consider 1g/kg to be low dose or not. We found 1.5g/kg worked well for DD. Anything lower did not. And we tried .4, .5, .75, 1, 1.5, and 2g/kg. Nancy, thanks for your reply. I'm wondering.... Do you consider 1g/k over 1 day to be low dose? That's where I'm confused. I guess I'm thinking its a half dose which is probably the same as low dose. Reaching our neurologist for clarification is near impossible. I know our autoimmune doctors believe low dose to be .4grams/kilo.

My DD did something similar back in 2008 for almost a year and the lower dose infusions were problemsome. I feel like they undid so much of what the HD infusion did for DD. We ended with a HD infusion and then stopped. In hindsight, if I had to do it all over again, I would have done one HD infusion and then repeated it after 3 mos (without any LD infusions). It is normal protocol to do 2g/kg over 2 days.

I agree completely with Laura re titrating up very slowly --- that's something I would do over a period of weeks. And the importance of taking MB12 and B6 with the Deplin. Another thing to know, Deplin has artificial dye in it. Many children react very badly to artificial dye as it seems to cross the BBB very quickly. It magnifies all of my DD's issues 10-fold if she gets the slightest trace (particularly red or blue dyes). It increases her anxiety and moodiness and results in rages.

We have our Amphotericin B compounded into capsules since there are artificial dyes in the ones you get at the regular pharmacy. My DD cannot ingest any dyes as they make her anxiety worse and cause her to rage. The capsules are normal size -- not big, not small. I don't know about the ones with dyes in it. To an earlier comment you cannot get Alinia dye free, not even compounded. We had to use Tindamax (compounded) instead for C-dif.

Hi Denise, Please be sure to look for other underlying TBIs in addition to Lyme, even if test results come out negative. Don't assume Lyme is the only TBI. I "thought" we were done treating DD's Bartonella a while ago but that seems to be the most difficult to clear. In fact, DD's strep titers have been elevated consistently for the past several months and I'm guessing it's due to Bartonella. We have been treating Lyme for over 2 1/2 years. Nancy

Sorry, SBC is Saccharomyces boulardii capsules. We tested through metametrix. Nancy Sorry - I seem to have lots of questions today. What is SBC? Who's OAT test did you run, and which specific test? Thanks so much.

My DD is taking Tindamax, Amphotericin B, GSE, and SBC for C-Diff and it seems to be helping. We had to switch from Diflucan to Amphotericin B a couple of years ago due to elevated liver functions.

Since we've been using it as part of our daily regimen we have no more need for Zyrtec or other anti-histimines and no need for allergy shots. No more seasonal allergy problems and, when combined with Transfer Factor on a daily basis, colds are non-existent or very short-lived! I used to suffer from chronic bronchitis each year for over 20 years and that is now a thing of the past. P.S. if I had to choose 3 supplements I could never be without....it would be Querciplex, Transfer Factor, and D3!

Interesting...thank you for this feedback, rowingmom.

No, not yet but I'm planning to order it. I've been off all abx for Lyme/Bartonella for almost a year and doing great but doctor wants me on it as I am homozygous for 677 as DD is. He wants to use it to thin my blood. Concerned about possible blood clot. I'm wondering if it might be good for DD who is still battling chronic Lyme and Bartonella. PANDAS in remission for long time. I like the fact that it is good for breaking apart biofilms.

We've been using Querciplex for many years. Love it! Can't be without it!! DD17 takes 1000 mg quercitin bid.

"In chronic Lyme and associated diseases Lumbrokinase breaks apart biofilms, improves blood flow to the tissues by decreasing sticky blood (hypercoagulation), decreases crampy muscle pain, and improves supplement or prescription medicine delivery deep into the tissues. Learn more at: http://www.treatlyme.net/lyme-disease-supplement-blog/2011/12/1/lumbrokinase.html"

"In chronic Lyme and associated diseases Lumbrokinase breaks apart biofilms, improves blood flow to the tissues by decreasing sticky blood (hypercoagulation), decreases crampy muscle pain, and improves supplement or prescription medicine delivery deep into the tissues. Learn more at: http://www.treatlyme.net/lyme-disease-supplement-blog/2011/12/1/lumbrokinase.html"

You may want to consider going completely dye-free to see if that helps the tics. Artificial dyes used to make my DD's tics, OCD, and mood dysregulation much worse. Even worse, they cause violent rages. By the way, you cannot get Alinia dye-free -- not even compounded. We had to go back to Tindamax (compounded dye-free) and GSE for c-diff.

Laura, Trying to find something to help DD with OCD, impulsivity, and ability to focus without using psych meds -- at least until we can get to the underlying cause. Every time we try to treat the Bartonella she ends up in the hospital. Three weeks ago we started her on A-Bart and after ONE drop she spiraled out and ended up out of school for two weeks. We tried to push through with one drop twice daily but it was too much for her -- even with detox. After 4 days we had to stop. I just want to give her a bit of a reprieve. Her anti-DNASE levels have been going up and she has had high levels of c-diff. She is back on Tindamax, in addition to Augmentin XR and Ayth,and she is also taking GSE in addition to her anti-fungals, probiotics, and tons of other supps. We also tried switching her to B12 injections from nasal spray but that seemed to make her worse. Still trying to tweak methylation but as you know that's tricky and tedious when complicated by so many other things. Of course we are trying one thing at a time so as not to complicate things even more but she seems to be reacting to everything. Our psychiatrist suggested trying Amantadine. Nancy

Thanks Trg girl. Have you seen any side effects? How long has DD been on it now?

Suggest taking milk thistle. That will help to bring levels down.

Thanks Jill, I would appreciate that!

I have been reading some old posts re Amantadine and I was wondering if anyone has tried this anti-viral. Has it helped social anxiety or OCD? I know Trg Girl mentioned it helping with focus. If you have any first-hand experience with Amantadine, please post. Thanks. Nancy

In order to keep my DD headache free the key was lots of water a few days ahead, all throughout, and for two weeks after IVIg. And I mean a ton of water. In addition, I gave her dye-free ibuprofen (600 mg tid) a few days before, during, and for two weeks after. In addition, I gave her dye-free benedryl throughout the day(s) of the infusion, as well as the day after (only at night the day after if she was doing really well). Finally, I made sure never to do IVIg on an empty stomach, otherwise she got nauseous. By doing this DD never needed prednisone during the infusion. The one time she tried it she had a difficult time. It's better to start at a slow speed, see how it goes, and then increase slowly. After the first few we had a good sense of what she could tolerate and how best to prepare.

My experience has been about 10 business days.

We were successful using immune deficiency in 2008/2009 -- DD had low IgG levels. Once IgG levels were normal we tried using PANDAS diagnosis but it was rejected after multiple appeals. So we moved to HPHC. Now back to BCBS since DD no longer requires IVIg.

Both DD and I had great success with Rifampin for Bartonella, although there was tremendous herxing in the beginning.

Abx cannot kill SBC but they can kill Bifidus. So you can take abx alongside SBC but you should space out Bifidus two or three hours apart from taking abx.