Hopeny

She started the MTHF, Rifampin and Klaires probiotic at the same time so you are right it is hard to tease out what is fron what. We are also treating yeast, another complicating factor. Since starting a compulsion returned (skin picking), and some raging and rigidity. I put all the supps in a smoothie and she went three days without it and she actually seemed worse. Initially when I started the smoothies she was much better and had pain reduction but pain returned I have done my best to estimate 1/10 of a capsule to cut the MTHF dose down and I have to say I am seeing a bit of an improvement. I will defintely speak to Dr. O'. about this, but my consult is weeks away and she already answered one email for me on something else so I don't want to ask if I don't have to. I am not sure how I feel about the NAC, definitely higher doses were not good. I read about the biofilm busting aspect so am trying to plow through. She has made so much progress generally and is sooo much better most of the time that I feel that this is working fairly well. Well, you have a lot going on right now, so I'm not sure it's possible to tease out the role of methylfolate dosage. To answer your question - I stopped methylfolate and all supplements entirely (except probiotics) for 2 days in order to do a urine test. At the end of the second day, I saw a dramatic improvement in the rages - but realize she wasn't dealing with bartonella or any other infection at the time. I then added back one supplement at a time, saving the methylfolate for last. When I added the methylfolate back in at the old dose, I saw a return of lability within 2-3 days. So for us, it was pretty clear. At that point, I took her back off and stayed off for a week. At the end of the week, I saw a gradual return of mood issues. So I knew I git ugliness at 400mg daily and ugliness after 7 days of nothing. That became my range of what was too much and what was too little. Then we tinkered until we settled on her current dose of 67mcg every other day (67mcg = 1 drop of Yasko's methylmate B liquid http://www.holisticheal.com/methylmate-b-nutritional-supplement.html) It seems absurd that such a low dose should do anything. But here we are in the 3rd week of January - DDs worst month of the year where she traditionally descends into madness for the past 3 years, and she's steady. No mood issues. So go figure. (DD is 53 lbs) In your case, it's going to be much harder. You don't want to stop the rifampin or even the burbur if it's helping. But both Yasko and Ben Lynch suggest 400mcg/daily as a general dose for children as a starting point (both also say you have to tweak from there - everyone has different needs based on unique combos of other genetic mutations and diet). So maybe discuss this with your doctor and try changing nothing except the methylfolate and see what happens for a week. Alternatively, you could try a one-time experiment using niacinamide (B3) as described in the link I posted above (http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/). During a rage, give DD 50mg of niacinamide ( I opened a 500mg capsule and sprinkled what I thought was 1/10 of it into some food b/c I couldn't find smaller doses). If the rage subsides within a short time (it worked on my DD in 45 min), then that might be a clue the overmethylation is behind the rage. If it didn't do much, then that might point to herxing instead. Of course, Dr O has way, way more experience at this, so these are just ideas to talk about with her, if you can get a moment of her time. But if you find yourself tearing your hair out one evening, or over a weekend, a one-time niacinamide test or a few days on a methylfolate holiday (w/out any methylfolate) might give you some clues. That's how we ended up figuring it out for my DD. (oh - and just to muck things up more, my DD does not do well on NAC. Tried it twice - both times before treating MTHFR - so that may have had something to do with it. But one other option is to stop the NAC and see if you notice any difference after a week - just to rule it out as a contributing factor).

I find it dissapointing that with all the people that have Lyme, there are so few signatures so far, I hope this will change

Thats great! If you see an impact from Doxy I would highly suspect Lyme/Lyme confections. And even if he has Lyme it doesn't rule out other infections. It just makes it more complicated to figure out what's what. I think you said your son was very tired., another major Lyme flag. IMO given Lyme could be a factor be very careful with steroids , steroids will exacerbate Lyme. Unf. I have personal experience with this. Will be interesting to see what happens with lethargy, if I recall it took longer for this symptom to completely resolve with my dd but we did see early improvement. Rifampin/doxy can be a very good combo for Lyme/bartonella. Does your son have any rashes/stretch marks or foot sole pain?

Done and posted on my Facebook

I believe you need two abx to avoid drug resistance with rifampin. Due to it being almost impossible to get all thus stuff into dd I do give around mealtime , I will ask llmd about the pee color and also try to give in empty stomach this weekend to see. Dd is on compounded suspension not sure if that makes a diff. Someone on Lyme.net told me not everyone gets orange pee but now I am worried. When I told Dr B her dosage he thought it was a hefty dose

My DD9 has been on for 3 months for Bart. I was pretty scared of it initially, DD got liver checks/CBC weekly for the first four weeks and now monthly. Stretch marks (Bart rash) showed up four days after starting which I still find remarkable. DD has had what I believe are Bart herxes on it, some anger episodes. I am plowing thorugh because I now believe for sure she does have Bart due to stretch marks and anger episodes. Dd's urine has not turned orange which I find odd as she is on a higher dose for her age I think (75m 2x/day). Still waiting for pain relief though DD's foot sole pain still persists. I am trying to be careful of keeping her exposure to possible TB low (no taking the train to NYC etc) because one of the zillion things I worry about is drug resistant exposure while on this med. DD's good days are getting a lot better and longer, things are mostly good.

I saw this too, this vaccine had an adjuvant that is not permitted in the U.S. but is used outside the U.S. Scary.

FWIW, I asked Dr J about this and he said kids with congenital Lyme have extreme issues, extreme floppiness (cannot hold head up etc). My personal and completely unscientific theory is that parents infected with Lyme have kids that are more succeptible. My kids both have Lyme, one chronic and one recent case with a bite kind enough to leave a bullseye rash calling card that was not cured with six weeks of abx. A friend of mine also has the exact same situation with her two kids. There must be a reason for our kids getting sick and not others, either genetic or some exposure that left them vulnerable.

We used Doxy for Lyme and co-infections. It had an almost miraculous effect when DD was in a major exacerbation on a 5 day course, for her most alarming psych symptoms. Literally within 24 hours. It does not work on Strep at all and has some action on Mycoplasma. We also did a 60 day course which I had high expectations for but did not get as much mileage as the Biaxin/Augmentin combo. I wanted to pair it with Rifampin for DD's Bartonella but she refuses to take it again because the liquid tastes really bad. This is not an issue in winter but you need to be very careful with sun exposure.

LLM after reading your posts on MTHF 5 I have dialed down DD's dose (turning 9, 65 pounds) She started at the same time as Rifampin for Bart and I have seen rages which I have assumed was Bart. She was taking 5 MG/day. I have 10 MG capsules so am trying my best to approximate 1 MG (am ordering a lower dose) . My question to you is, how quickly do you see a difference? Its so hard to know whats what. Also I have been giving Burbur, it seems to help and she is actually willing to drink it, so I am wondering if it is in fact Bart. Over the weekend she said I don't kmow whats wrong with me, I'm crying and I'm not sad. She said she feels out of control with the rages. Didn't really happen before the Rifampin. The good times are much, much better/more frequent, she wants more activities etc. DD has one copy of 677T and low glutithiaone (sp??). I am giving 300MG NAC, tried more but I dropped it back to 300. (more affordable at 300 anyway lol)

as far as I know if its in a multi dose vial it has thimeresol. that's the quick way to tell. you can get thimeresol free for adults, its the "pregnancy" adult version

I think most people with Lyme are in abx so they have trouble getting enough subjects for their study. If it works out please post results. Hope the other problems are resolved I'm glad it was useful, I wish we could do but it's hard to imagine four weeks off abx

My pediatrican (who so sadly left the practice) was vey kind to go get a single dose mercury free one for DD9 when she overheard me ask the nurse who told me she didn't think she had them for DD8's age.

I am glad your daughter is recovering. It is interesting because we have some similar issues at school, centered around the mean music teacher. (who btw I spoke to DD's regular teacher about and it was confirmed that the music teacher is indeed mean!) DD is not refusing to go so i just validate her complaints and that seems to work for now. I agree that you should consider trying to speak to the art teacher and ask her to quietly offer some modifications that your DD can manage. Since she is not being called "mean" but strict and that its hard, it seems like something that could be managed. In most of the cases where I have gone to talk to the teacher etc it has had a positive outcome. In fact, sometimes they have ideas that I would not have thought of. Art can be very therapeutic so it would be good if there was a way for her to even enjoy it. Since we have had lots of improvements i too am trying to set some limits for the sake of all of us, it's always hard to know the right thing to do. I worry about what toll this has taken on my 3 yo. I do try to keep a minimum level of activity and not overload even though its tempting because we've had improvement. Sounds like the tide has turned for your DD and I wish continued steps in that direction.

Posting this as this test is pretty pricey, down side is you need to be abx/anti microbial free for 4 weeks prior http://lymedisease.org/news/touchedbylyme/lyme-test-research.html

DD (also pt of Dr. tested very high for an indicator of yeast (arabinose sp?)with an integrative MD we saw. She went on Enhansa for it.She had a large red area on her bottom that I wondered if was strep that cleared up right after starting the Enhansa so I am assuming that was yeast too. My 3 yo had a bright red diaper area with bumps and I asked them to swab for strep which they did and it was negative. They gave me a steroid cream that cleared it up.

Does anyone have a sample they would be able to send me? DD is constantly having issues pop up with teachers not wanting to let her sit in the floor (she can't because of arthralgia pain in hips) and I am tired of dealing with it and just want to get it in writing. I also wave to somehow include the brain fog, lethargy etc. if you have something you used that worked please pm me or share. Thank you

First I am very sorry you and your daughter are going through this, I went through this with my PANS/Lyme daughter when she was 8 (my first posts on this board were on this topic) and it was absoultely the worst most helpless time I felt as a mother. What is concerning is that your daughter is thinking through a way to do this with laying a mattress on her so I think you need to take immediate action. My daughter was looking out windows contemplating jumping and also would try to hold her nose/go under blankets to stop breathing. It is actually not likely depression but a type of OCD, the suicidal thoughts are a compulsion - the child does not actually want to die, they are just looking for relief from the obsessive thoughts. Immediate CBT would be my first thought also with a concurrent evaluation from a PANDAS knowlegable psychiatrist. My daughter's suicidal ideations were quickly relieved with anitibiotics. We had to change therapists as ours was not an OCD expert and just didn't get it. I also highly suggest without her being aware you monitor her 24/7 and limit her access to high windows and the internet to get any ideas. While their ages are terrifyingly young for these thoughts, fortunately they are limited in knowing how to execute these thoughts. Where are you located? I have a great group of therapists who specialize in CBT near where we are in White Plains, New York if that will help. While I have no experience with C Diff I think SF mom makes excellent suggestions, Dr. Nancy O'Hara is an excellent PANDAS knowledgable integrative MD in Wilton CT if that is convenient for you, if it is I am sure if you called and explained the severity of the situation you could get an urgent appointment. Hugs to you and you will get through this.

We avoid yogurt so as not to inadvertently give any strep strains. Honey as I understood it kills bacteria, my nanny who grew up on a farm told me they used to use it on cuts for healing. I know there is a bacterium in honey that can grow and thus should be avoided by children under one year (maybe a form of bottulism? not sure) but I never heard of the problem for older children. Regarding perfectionism, this is part of OCD. My daughter is both a perfectionist and extremely stubborn and we have a therapist who has made great progress with her despite these and other numerous obstacles. It sounds like maybe it is not a good fit, if your son has these qualities it is the therapists job to overcome them and certainly not to blame the failure on something that may be part of the disease. We went through two therapists and one psychiatrist before finding the right fit. We saw an integrative doctor who discussed a number of foods to avoid but none that you mention were on that list.

You can get a watch that has GPS to track kids. It sends an emergency signal if its removed or leaves a perimeter. I think it is sold by brickhouse security, There are various other tracking devices to carry but ur doesn't seem effective. It's a scary world, but stranger abduction us extremely rare. I have personally considered such a device but never purchased it. DD is annoyed with me as us for being overprotective so it would send her over the edge. I practice with her how to handle situations and pray.

Against advice not to vaccinate my DD got the shot. We did not see any effect from it. It's a personal decision for every parent, fortunately for me it turned out to be an ok decision but I know the majority opinion is not to.

Surfmom I would recommend testing with Igenex for Lyme and co infections since you are not seeing progress, Lyme Literate doctors generally consider the following bands + clinical symptoms indicative of Lyme: 18,23,30,31,34,39,83 and 93. One band, IGG, IND or IGM, is considered significant. Most doctors, even most PANDAS doctors, would call a test for example with only one of these bands negative because they are not experienced enough with Lyme, however that result + clinical symptoms would be considered positive by many LLMD's. The only labs that test for all of these bands are Igenex and Stonybrook, and for Stonybrook the order needs to specifically reqeuest "show all bands". Quest/Labcorp testing is insufficient, though my daughter did test CDC positive with a Lyme indicative band on Quest, many do not because Quest only tests for a few strains of Bb. Bartonella also frequently tests negative. Do you have a cat? They also carry Bart. When my DD was first dx'd amoxicillin relieved her symptoms, which then came back with a vengance when she finished the course. Also to mention I can't recall what your testing for Mycoplasma was. Dr. B considers IGG>5 indicative of active infection, and Myco can cause joint pain too. MyDD has this ongoing as well. Good luck i hope you see results soon.

I was really astonished by how much real content is in it, it was way more thank I expected which rarely ever happens

I just bought The Lyme Disease Solution by Kenneth Singleton, its great not only for Lyme but for PANDAS too, he goes into tremendous detail about immune processes, methylation, supplements, antibiotics and most of all inflammantion and how to address/fix - I am going to have to read it a couple of times but I already found some new things to try. My DD has been on abx since March 2012 and we are just starting supplements. This is an amazing book and is giving me more insight into what is happening and how to help my daughter. Many things I have read about on these boards but there are lots of additional things to try. It is not written for children, however there are many ideas to research and consult with integrative with. I downloaded Kindle version but now I wish I had the hard copy. Also posted on the Lyme board.

I just bought The Lyme Disease Solution by Kenneth Singleton, its great not only for Lyme but for PANDAS too, he goes into tremendous detail about immune processes, methylation, supplements, antibiotics and most of all inflammantion and how to address/fix - I am going to have to read it a couple of times but I already found some new things to try. My DD has been on abx since March 2012 and we are just starting supplements. This is an amazing book and is giving me more insight into what is happening and how to help my daughter. Many things I have read about on these boards but there are lots of additional things to try. It is not written for children, however there are many ideas to research and consult with integrative with. I am going to post on the PANDAS board too. I downloaded Kindle version but now I wish I had the hard copy.