NancyD

Okay, that's about how much water I used to dilute. Have not heard anything about holding it in your mouth under the tongue. Did your LLMD tell you this? According to instructions from my doctor I start with 1 drop 2x daily for 3 days and then increase by 3 drops 2x daily every 3 days until I reach 20 drops 2x daily.

Thanks S&S. I have read it can be pretty immediate. I took my first drop this morning. Do you dilute your drops in water? If so, how much?

Thank you for the offer, Laura! I received my bottle this week so let me see how the challenge goes first. DD will also have to start on it once she gets out of OCDI. If we see any improvement I would love to take you up on your offer. Thanks! LOL...I know what you mean about that cabinet of stuff you tried but didn't work.

I have been feeling GREAT in the months I have been off abx for Lyme/Bartonella. Eating really healthy (mostly organic, vegetable-based diet; no dairy, sugar, or processed foods; very low carbs and high protein). Still on Transfer Factor LymPlus and other supplements for support. But in the past few months I have experienced foot pain again, nose bleeds, night sweats (not menopause, as I am long past that), and some sleep problems. The sleep problems could be due to recent recent stress with what DD16 has been going through. I'm thinking I never got rid of the Bartonella completely. My doctor wants me to do A-Bart challenge. Just wondering for those who have done this what you experienced, how quickly, and to what degree. Was it as bad or worse than herxing from Rifampin or Tindamax? I've tried to clear my schedule as best I can for the next few weeks. I know everyone reacts differently but just wondering what you experienced. Thanks!

I was on it for ~ 18 mos in combination with Tindamax and had no problem.

I can only speak to our personal situation. Before starting treatment my DD's lyme symptoms seemed to come out and get worse any time she had another infection (yeast, bacterial, or viral). For me, stress is what made my symptoms come out and get worse. I definitely think it was episodic before starting treatment. Nancy

The second step -- tetrahydrofolate

Yes, this and a whole lot more! What kind of treatment is your DD on (abx, supplements, herbs, etc). Is she detoxing? Are you supporting her liver and adrenals? I agree with Bill about looking into MTHFR. And also possible KPU. Is your DD completely dye free? Red and blue dyes alone will do that to my daughter and more!

From what I have read in the study they are prescribing 2 mg/kg Leucovorin divided into two doses (maximum 50 mg daily). The dose was increased over a 2-week period. Yes, there is a difference between folinic acid (5-formyl tetrahydrofolate) and methyfolate and I hope I can explain this accurately. There are 4 steps to converting folic acid into L-methyfolate: folic acid > (1) dihydrofolate > (2) tetrahydrofolate > (3) 5, 10 methylene THF > (4) 5-methyfolate. So folinic acid is one step in the conversion process. Those with heterozygous 677 MTHFR may have difficulty converting folic acid into L-methylfolate and those with homozygous 677 MTHFR will have greater difficulty converting folic acid into L-methyfolate. Ordinarily you would give L-methylfolate, rather than folinic acid, to an individual with homozygous 677 MTHFR in order to by-pass the whole conversion process. However, if the individual also has a positive folate receptor (FR) blocking antibody (meaning an antibody that blocks the binding of folic acid to the folate receptor) or binding autoantibodies against the folate receptor (this is abnormal), this presents an additional problem. And, if there is a COMT mutation this may further complicate the process. This is where I start to get lost and am trying to figure it out. Perhaps someone else might want to add to this?

We tried a 3-month test adding 600 mg tid and it did help with OCD/anxiety and fatigue. The half life of ibuprofen is fairly short so we were told 3 times daily. I didn't want to keep her on it indefinitely and risk her having more serious GI problems so now we just give as needed.

So you think Leucovorin helped with anxiety and OCD? That would be very cool! We are first increasing DD's methyfolate slowly to 15 mg and if that doesn't help we're going to take her off the methylfolate and try the Leucovorin instead. Or, I suppose we could try a mixture. One thing we have not yet checked is the COMT gene. If DD is COMT +/- then she may do better with Leucovorin because it does not add methyl groups directly into the system. From what I understand the tiniest tweaking in Leucovorin can make a huge difference. I'm sorry that I almost missed this post. Yes, my son had low levels of blocking antibodies but no binding antibodies. He was tested several years ago for the MTHFR mutation and he was negative. We are not sure what precipitated the cerebral folate deficiency but it's suggested that it resulted from some autoimmune process. We don't know for sure how it is tied into his PANDAS or autism diagnoses but there probably is some relationship. Plasmapheresis was tried for quite awhile but it was not helpful. The biggest improvements were seen from a prednisone burst trial and then more recently from therapeutic dosages of Leucovorin. His many symptoms are less severe but they are not gone yet. The severe movement symptoms, gait problems, eye symptoms, sensory sensitivity, anxiety and OCD are improving. There is still more tweaking to do to return him to health. Yes, we did try methylfolate((Deplin) briefly but went back to Leucovorin on the advice of his neurologist plus Leucovorin was covered by our insurance plan and methylfolate wasn't. We have not seen any adverse side effects from either.

We had a similar problem in 5th grade. Very high anxiety and DD was being bullied at school. Eventually she refused to go back and I had her tutored at home (paid for by the district) while I fought for and won an out of district placement to a small private school for students with anxiety and other social/emotional issues. Our district pays for the placement and she gets transportation. She'll graduate from there in two years and go on to college. They have small class sizes (8-10), good counselor support, and everything is tailored to your individual style of learning.

Google "probiotics shipped with ice" and you will find many places.

I doubt Amazon would pack with ice. I order Theralac from my doctor's office (Ken Bock, MD) and they ship all probiotics on ice. Not SBC though because I don't think that has to be refrigerated. And when I used to purchase Bifido Factor from Natren they always shipped on ice. Both places even in winter. I think Natren used to say on their website that they shipped on ice. It was REALLY well packed and I believe they suggested on their website shipping by overnight delivery in summer. I used to order for a few months at a time. I just checked the Natren site and it says: "*A small P&H fee of $12.95 will be added for refrigeration packaging materials." I wouldn't ship probiotics in summer unless you know it will be packed on ice. Don't know if amazon does that! Where do you get yours from? I'm not totally out, so I can wait for cooler weather.

Whenever I order probiotics in summer they are packed on ice and shipped via overnight delivery.

Here is a link to a press release about the anti-cerebral folate autoantibodies test at SUNY: http://www.downstate.edu/news_releases/2011/news_release_full26.html And here are a couple links to their study: http://www.nature.com/mp/journal/vaop/ncurrent/full/mp2011175a.html http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2715943/ could you please send me info on the SUNY study?

I have had a history of nose bleeds my whole life, but interestingly, the only time I did not have any was the 18 months I was on abx for Lyme/Bartonella. Even during the winter, which is highly unusual for me. Then, they started up again ~ two months after stopping abx treatment. I have also experienced some foot pain and a couple other minor symptoms. So I'm thinking my nose bleeds may be linked to Bartonella. I'm about to do an A-Bart challenge so it will be interesting to see if the nose bleeds get worse before getting better again. The one thing that has helped is vitamin K drops.

Lisa, I forget how old your child is. The OCD Institute at MacLean is fabulous!! They use ERP. Very impressive program. My DD is there now. But the minimum age is 16. Email if you'd like to know more. I just now saw Tiffani's post. There are many more teenagers now (over the summer). My DD has made friends with several. I agree about her comment re if the child is in exacerbation it may not be the best place. My DD's PANDAS is in remission -- her severe anxiety/OCD and impulsivity are the only remaining symptoms and most likely caused by either Bartonella or methylation issues. She is getting a tremendous amount of help at OCDI and she really likes it there!

We have to do blood work every month.

So his blocking antibodies are low positive and binding antibodies are negative? My DD's blocking antibodies are negative and binding antibodies are low positive. Is he 677 or 1298 MTHFR? Homozygous or heterozygous? Did you ever try methylfolate to treat or did you go right to leucovorin? Did he experience any side effects? What kind of improvements are you seeing? Thanks!

Ken Bock in Rhinebeck, NY is excellent. He treats ASD, PANDAS, Lyme et al. He has been treating my DD for 9 years and now my Lyme/Bartonella. She may want to get a copy of his latest book, Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies. It's a good read and packed with lots of valuable information.

Die-off from yeast typically lasts from a few days to a couple of weeks. Is she taking a good probiotic? Is she detoxing? It could also be herxing. Does she have Lyme?

Did it help DD's methylation? What results did you see? Is she still on it?

It could be the die-off. Has s/he been on an antifungal before?

My DD16 takes amphotericin B 4x daily. Never any problems with it.