LNN

Here's to a new year where neither of us has reason to have those bright orange urine collectors sitting in our fridge or popsicle sticks and tupperware poop containers "at the ready" in the bathrooms! (and to think, normal people are making resolutions about losing weight - how mundane!) Merry Xmas Philamom!

This is a good overview http://www.alsearsmd.com/tag/activated-charcoal/ He recommends a pretty large dose that I don't find particularly practical. We use between 4-6 capsules (280 mg/capsule) mostly because to ask the kids to take more (on a daily basis) results in pill fatigue (they take quite a few). Yes, timing does matter. Take at least 2 hrs away from abx or probiotics. We have done the noontime dosing and it works fine. During school days, you can dose after school and just push the abx toward the end of dinnertime. The stool will change color - becoming greener. That's normal, nothing to worry about. If he gets constipated (both charcoal and bentonite clay can be binding - that's kinda the point after all), increase fluids, add some pysillium husk (the active ingredient in some fiber drinks but you can get it in pill form at health food store) or add some magnesium (100-400 mg depending on weight). Give enough magnesium (the ingredient that makes milk of magnesia effective) to produce a daily but normal BM. If it gets too loose, reduce the dose, if BMs aren't daily, increase dose until they are. Magnesium citrate is easiest to find but is most likely to lead to loose stools. Magnesium glycinate is better absorbed and less likely. There are other forms as well. When you have time, you can google "types of magnesium" and get a run down to decide which form might work best for you. Water also works well. Anything that keeps things moving. Ah, what a nice Christmas message!

Get out of my head, Laura! My friends don't refer to me as "Ms. Oliver Stone" for no reason! Oh, you'd have a blast in lyme land! More conspiracies and back room politics than Oliver could ever dream up! You are probably like my DH, who watches news shows with the opposite views of his own, just to get riled up. Me, I prefer curling up with a book on heterozygous DNA polymorphisms Is Santa bringing you Yasko's book?

I am not judging you. We all do what we think is best and what we feel will give our kids the best quality of life. My understanding is that kids with infection-triggered issues continue to deteriorate over time if not given some sort of biomedical support. This does not have to be from antibiotics - some have had success with homeopathy or herbals or diet - but some sort of support system for the body, to make the body strong enough to fight the infection. I'm not aware of stories where kids just somehow get strong enough to fight the infection on their own and recover. But then, those parents wouldn't be on the forums where I visit and their stories probably wouldn't be widely known. So who can say for certain. The fact that the zith is exacerbating his symptoms sounds like herxing to me, but again, I have a lyme perspective, so that is going to alter how I see the world. I have seen my kids get worse when put on the right antibiotic for their particular infection. When bacteria die, they release toxins (some strains of strep release the toxin that causes scarlet fever). Sometimes it's the toxins, more than the bacteria itself, that exacerbates the situation. In the lyme world, not attacking the bacteria isn't an option. So the focus shifts to helping the body get rid of the toxins or lessen the load to get relief. We talk a lot about detox. You obviously have to do what you feel is best for your son. Having been on this forum for awhile, you've probably already seen suggestions to get checked for lyme and bartonella or to see an LLMD. I respect Dr T but have not gotten the sense that he gives much consideration to lyme (which is ironic, given his complete belief in the power of myco p. to induce Pitands and myco p. can be transmitted by ticks). Only you know whether this is something that makes sense. I hope you find peace with whatever decision you make and that you're able to give your son the best long term situation possible. It's obvious he already has all the love you could give.

Perhaps I'm too jaded after all this time. Screams of politics and pharmaceutical lobbying to me. It is ironic and two faced that they'd print this yet fund research studies by Swedo and Murphy that suggest abx can be successful in treating neuropsych issues in the right sub-set of kids. Guess you've just identified a goal for 2012 - wouldn't it be great for Vickie's '12 end of year video to flash "NIMH supports antibiotic treatment for PANDAS" ? Seems there's still work to be done.

Yes, a 15 yo can certainly have Pandas. And it's possible some of your son's issues could be strep/Pandas related. There are herbal and homeopathic options for treating strep and you can either explore that with your integrative doctor or some of the parents here may have specific suggestions for you. TruFlora is a good probiotic for combating yeast, in addition to the dietary changes, and if you end up on antibiotics, s. boullardi is a probiotic that will not be wiped out by it. Yeast will certainly cause some of the symptoms you're seeing. But the other thing that struck me was the ODD and bi-polar dx at such an early age. Some claim that bi-polar looks different in kids and are quick to label any severe mood swing as "bi-polar". I can only tell you that we've been seeing rapid mood swings - from sweet and happy to manic to raging evil witch - all in a matter of 20 min, in my DD6. For her, we strongly suspect high copper. Her copper levels are elevated and her zinc is low. (copper and zinc tend to be ying/yang metals - the move in the opposite direction of each other). As we've supplemented zinc, her mood swings became more intense, suggesting that the copper was being chelated out of her body but making a lot of noise in the process. One thing we've done is add in activated charcoal or bentonite clay at bedtime to soak up/bind toxins and help eliminate them from her body. And we are checking her copper/zinc levels every 2 months. By supplementing zinc (she has a genetic zinc deficiency known as pyroluria), we are also strengthening her immune system and re-starting her body's ability to detox (known as the trans-sulfuration pathway if you want to research it). At this point in your battle, it's likely there is more than one thing going on. It sounds like you've finally found a doctor worth keeping and who will help you unravel things. You may also want to consider an integrative MD or D.O. (doctor of osteopathy) if there are certain things the psych can't prescribe or order. DAN! (Defeat Autism Now) doctors are also well versed in bacterial and viral infections, yeast problems, metals and chelation, and treating with alternative options. I know it's exhausting, but investigating multiple issues, including Pandas and metals, may be very worthwhile.

Just a follow up to complete my thought after seeing the LLMD yesterday. He likes the balance of supplements in Core and didn't want us to mess with cutting back and using just zinc pincolate in place of any of the Core pills. I may do it for myself, as I'm not his patient and if money is going to be cut back, it will be on me first. But he wants the kids to stay on "the good stuff". He felt the erratic behaviors we seeing, esp. in DD, is likely a mix of things, especially copper chelating as a response to the zinc. We lowered the dose temporarily but will need to push thru to get to the other side.

Ok, can someone explain this to me? It makes no sense to me. If artemisinin is an anti-malarial/anti-viral, how you could you develop antibodies to it? And if you could, why would taking it steadily vs. pulsing make any difference - your body is going to make antibodies to an antigen regardless of whether it sees it a few days a week or every day. Are you talking about the fear that the malaria/babesia can develop resistance to the artemisinin? Would that be the reason for the pulsing? Something about this isn't clicking for me. Can someone explain? Also, anyone used this for virals (EBV, HHV-6, cytomeglovirus)? And did you pulse for this as well?

It doesn't have much of a taste. A little smell - about as strong as a mild herb you'd use in cooking. Nothing overpowering. The pill capsule keeps most of the smell and all of the taste encapsulated. Just not "odorless". DD who is taste sensitive, takes it without issue. I would always encourage someone to discuss herbs with their doctor and to research drug interactions with any other meds you're taking. However, if your docs are all "conventional" they probably have never heard of it. It's widely used by integrative docs and if this thread were on the lyme board, a high number of patients have probably used it at some point. You could post over there to see if anyone has research articles for you, or post on www.lymenet.org with a similar question. You will have to follow your gut on this one. KaraD - my understanding of andrographis is that it's an anti-viral - it works against viruses in the way we think of antibiotics working against bacteria - not the same mechanisms, but with the same outcome. I do not believe it is "immune boosting" and to my knowledge, it wouldn't stimulate the production of antibodies to anything other than a specific virus. If you had Pitands, you might be reacting to the virus itself, in which case, taking an anti-viral would be like taking an antibiotic. Andrographis would be used to treat the infection. It has not been "activating" for my kids and we have all used it to lessen the impact of an oncoming cold. My DD has just been dx'd with epstein barr and our doc doesn't feel andrographis would be strong enough for her. She will be taking something stronger. But everyone is different and it comes down to your own research and putting in context of your own health situations.

Thanks everyone. Suzan - I'm kinda where you are. Thinking of substituting one CORE and using a zinc pincolate in its place for all of us. Will see the LLMD today and get his thoughts. Also, the kids are super wound up (aside from Xmas excitement). DS is very hyperactive (but not ADHD) and DD is super silly - unable to control it - very "Pandas-like" but no signs of yeast issues. I find that if I take Core at dinner, I have a hard time falling asleep and tend to wake up at 3:30 or 4am and can't fall back asleep. If I take it earlier in the day, I don't have this problem. Anyone else experience this? I've been giving everyone 1/2 of their daily Core at breakfast and the other 1/2 at 4pm after school - thinking it's good to give nutrients spread out across the day rather than an overload all at once, which might be a waste. However, if the whole issue with KPU is that you need to flood the system just to have enough absorbed, would it be better to give it all at once, and if so, what time of day? Experiences?

It very well could be lyme related. Tindamax is a killer. We had to stop after 5? weekends - DS couldn't handle it. You say your DS can make it to school on time 2-3 days/week. Generally the same days of the week? "Most" people feel a bounce - a few good days - after a tindamax weekend. Do you see any correlation/pattern? Does the energy come in any sort of pattern? The sleeping all day Sunday would also match - assuming you're starting tindamax on a Friday night, by Sunday, he's had 4 doses and may be knocked out by it. And then of course, he's become that alien creature known as a teenager and while I don't yet have direct experience, I hear the entire species likes to sleep past noon. Could it be lyme? sure. Could it be teen stuff? sure. How do you know? IDK. As for helping him feel better, there's detox and there's this little topic near and dear to me called methylation But I don't want to go there unless you want me to. Aside from those two topics, the other thing you can do is either take an abx holiday for a few days - if you see significant changes - good or bad - you'll know it's probably lyme related as opposed to teen related. Or you can back off only on the tindamax. Skip a weekend - or only do two doses instead of 4 - and see how he feels for the following week. Does it end? My kids are significantly better - but it took us a long time to uncover all the things that were playing a role. For us, it was lyme/bartonella, pyroluria, metals (mercury for DS and copper for DD) and methylation for DD. Yes it ends, but for us it took more than a combo of abx to finally get sustainable improvements. (aren't I a ray of sunshine?) Hope it's much simpler for you!

DS, DD and I are all taking CORE. It has done wonders. However, with all of us on it, one bottle lasts 24.5 days. At $74/bottle, this is a budget-breaker. Now, having the kids get so much better is certainly worth $25 per kid, and there's no way I'd consider dropping pryoluria treatment. But I'm wondering if anyone knows of a more affordable option. We already take plenty of pills, so not crazy about supplementing individual ingredients. But are there similar combo products out there?

I don't have any brilliant ideas or solutions for you. Just wanted to chime in that I've been there. Last spring, my then 8 yo DS went into an episode triggered by intense lyme treatment (tindamax). Foul language and an emerging idea of sex was creeping into 3rd grade psyche, an DS, who normally tries very hard to fly under the radar and not draw attention to himself, especially from teachers, was calling another boy a shocking phrase. Now, DH is not winning medals for pristine language, but this phrase wasn't your everyday cuss word and wasn't one he'd heard at home. So here I am, getting emails and calls about my son's new vocabulary and how he and another boy are doing some inappropriate gesturing. I am both embarrassed and at a total loss about how to stop it. DS is in one of those episodes where he's lost all impulse control - where he promises to do better and 5 seconds later is right back at it, seemingly unaware of what he's doing or that it's wrong. We took away privileges, had talks, tried to have the teacher keep DS away from the boy who seemed to bring out the worst (not blaming the boy for my son's transgressions - just wanted to reduce chances for failure). The only thing that worked was Aleve. Motrin helped, but it had to be steady - every 6 hrs with no gaps. Well, the school day is 8+, so 1/2 an Aleve got him thru the school day and then when he got home, he got a motrin and then the other half of the Aleve at bedtime. We did this for a week and also stopped the tindamax and things calmed down. The teacher told me that our talks (the ones I had at home and the ones she had at school) seemed to be sinking in. I just smiled and nodded. It was the NSAIDs and the inflammation dying down, not our "words of wisdom". Like you, I didn't feel I could excuse the behavior or imply that I was condoning it. So I did the talks and the punishments. The ground rules had to be set. But I honestly don't think it was my parenting skills that made it stop. Fortunately, my son's out-of-character behaviors made his good friends back away for a few weeks. When he "snapped out of it" he was hurt that he had done damage to these friendships and he was then self-aware enough to realize the natural consequences of his actions. This past year, in 4th grade, he's repaired those friendships and now when a kid "sows oats" he shakes his head and says "man, that kid's in for a hard lesson".

It's an OTC available at most health food stores, probably in the same section where you'd find oregano extract or the cold remedies. Dosing is on the label. Ours says to take 1-2 pills twice a day. It's something you can take when you feel a cold coming on and taking it seems to lessen symptoms and shorten duration. We haven't used it for EBV et al but others have. Even Wiki - which seems to have a strong bias against "natural" products, has good things to say http://en.wikipedia.org/wiki/Andrographis

We've never tested ASO, so I can't answer all of your questions, but the first thing that struck me was to remember that Pandas is about auto-antibodies, not antibodies against strep. So the ASO isn't the enemy and it's not a measurement of how many auto-antibodies you may have floating around. The fact that you're seeing numbers drop, to me indicates that a chronic infection is being reduced/eliminated. So don't lost track of that great indicator! The second thing is that some of the integrative doctors I've read/spoken to feel that auto-immunity, especially when it comes to Pandas, can "go away' once chronic infections are eliminated and the body's balance is restored. That T-reg cells - the ones that regulate B cells (the ones that get out of control in Pandas) - increase and become more effective once the immune system is restored. Some think bacteria like lyme can hijack the immune system and suppress it, with metals, nutritional deficiencies et al and when you get on top of these issues, "auto-immunity" ends up being more "over-whelmed/ineffective immunity". Eliminate the hijackers and you get a "normal" immune system back. I don't know if this is true, or if our kids will always be prone to issues. But it sounds like things are moving in the right direction and you shouldn't lose sight of that. If ASO never returns totally to baseline, does it matter? Do the kids who stay a little high continue to struggle? Or is it just a number and the rest of the clinical picture is vastly improved? I think that's what matters.

We use andrographis when any of us feels a cold coming on. It seems to be effective in shortening the duration and severity of any viral bug. But we haven't used it on a daily basis in between colds. It does seem to have some strong evidence of being a legitimate anti-viral. I found some good Pubmed research on it a while back.

Agree with Nancy - unless you have access to IV glutathione, I don't think the oral supplement would have enough impact to make a dent in the anxiety. Might help with detox, but if I could only add one thing, it wouldn't be oral glutathione. My family has had great success with inositol. DD, DS and I have all used it at one point or other. DD is currently at 2.5 grams (47 lbs) and her OCD is virtually gone. She does have small issues with anxiety and perfectionism but I believe that is a copper/zinc issue - that's a different issue. DD had a bad response to NAC, as I mentioned in the other thread. But I think that could have to do with biofilms and not the efficacy of NAC on anxiety issues. What I like about inositol is that if you start out using the powder, you can build up doses gradually and tweak over 4-5 weeks. Nancy Xfcfer has said that your sweet spot on dosing can be found by building up to a point where you see the anxiety dissipate but just below the point where you see a manic/bi-polar see-saw effect between silliness and unexpected anger/meanness. That's been true for us. We had started to go beyond the 2.5 grams and saw unprovoked "attacks". We backed down and she settled into a pretty nice "normal". As NancyD says, not everyone finds inositol to be their answer. Some people really like NAC or SAMe. Unfortunately, it's trial and error. I'd buy a bottle of inositol powder (I like Source Naturals) and do a 4 week trial. The powder can be mixed into anything - is slightly sweet like powdered sugar. We just dump a 1/4 tsp directly onto the tongue and wash it down with a swig of water. That way you don't have to harass them about drinking every last drop or fighting any sort of grittiness for those with food sensitivity/texture issues. If the inositol didn't work for you, I'd probably put SAMe next on the list. You may also want to look into milk thistle for a "down the road" supplement. It's an excellent liver detox agent and while it isn't the anti-oxidant that glutathione is, it can really help clean out the system and produce a calming effect (but you do need to check if it has any interactions with any medications you're taking - it can change liver metabolism of some medications).

My understanding is that both SAMe and NAC perform similar functions and act on the same neurotransmitters, primarily seratonin. So I would be cautious in "double dosing" or giving two things for the same "condition". Much like you need to be careful in giving inositol if you were already using an SSRI. Here's an NIH study on NAC and SAMe effects on detoxifying the liver http://www.ncbi.nlm.nih.gov/pubmed/18068290 While I know they do different things, I think they also do some very similar things and would just be watchful for an "overdose" type of effect. NAC is also an effective biofilm de-grader and can be used for thinning mucus, much like mucinex. But DD had a bad reaction to it, perhaps because we were inadvertently doing "film busting" without being prepared for lyme die off and detox needs. I don't think SAMe has the same effect.

Impressive video. There doesn't seem to be any debate on glutathione's powerful role. Just debate on what to do if you're levels are low. Some say supplement and some say try to fix the issue that's making the levels low. The argument against supplementing is that it tells your body to make less of its own. Plus, oral glutathione is poorly absorbed (something like less than 10%?). DS took it for about 6 months and he said it made him feel better, but it didn't change the core of his issues. Since the stuff we were buying was $0.50/pill, it just got to be too much on the budget with the other things we were pursuing. But if money were no object, he'd still be taking it. No question it's a great thing for the body. The other thing some people use is Alpha Lipoic Acid, which is a precursor to glutathione and is much cheaper. The only precaution with ALA is that it can also be a mercury chelator and it can cross the BBB. So you may want to do a metals test (urinalysis or hair) before using ALA. I do not believe glutathione itself chelates metals. SAMe also converts to glutathione in the liver and is another option, provided you're not already using an SSRI or "natural" equivalent such as inositol or perhaps even NAC. But the video is a great demonstration of how "detox" can have dramatic effects on the body. It's probably one of the biggest lessons I've learned in the past year. Thanks for posting!

We did Pex at the end of a summer. DS returned to school on the first day - about 3 wks after the Pex. However, since we live 8 hrs from DC, DS was exposed to the germs of I-95 rest stops and bathrooms the day of his release from the hospital. We were told by the hospital staff as well as Dr L that life could resume to normal immediately - just no physical exertion until the puncture wound from the central line healed. But this was 3 yrs ago - looks like Dr L's thoughts have changed on exposure risk. For us, Pex improvement lasted about 2 months, but his relapse wasn't due to exposure, as we originally thought, but due to a chronic infection he had all along - lyme. So I don't think keeping him home would've made any difference for us. I will say that the tics - which were severe - only came back once in the past 3 years - and that was during a few weeks when we were aggressively killing the cyst form of lyme and he couldn't detox fast enough. So in some aspects, Pex had lasting effects, despite its not being a "cure" for us. Good luck!

Vickie, You have found your calling. Excellent job, yet again! Thanks for the uplift! Laura

I'm not sure any of us on this forum are methylation experts. We are parents of kids who suffer from infections and autoimmunity and neurological symptoms. What knowledge I have on methylation is only on its possible effects on the issues within my own family. You seem to have studied the topic a fair amount and I'm not sure what I could offer. Have you read the things published by Amy Yasko and Rich Van Konynenburg? Have you done any genetic testing discussed by these two? It could help you pinpoint your individual challenges and maybe avoid the confusion you seem to have over whether a reaction is an outright negative/incorrect supplement or if it's necessary detox event that needs to be weathered or perhaps supported with additional steps. I can sympathize with your frustrations in not finding medical support but I would urge you to keep looking. Given the complexity of the topic, I would think having someone who can order genetic tests, blood and urine tests would be extremely important. Labs are an important way to track your progress and catch any warning signs early. Naturopaths, D.O.s, DAN!s and integrative doctors may be more open/experienced than conventional doctors. You may also find this Q&A with Nathan Neil helpful http://www.prohealth.com/library/showarticle.cfm?libid=16338,or maybe his book. He may also do phone consults - I'm not sure. It sounds like you are right to keep pursuing this. I hope you can find a doctor to support you and that you find the good health you know you deserve!

Holding you guys close in my thoughts and prayers :wub: Hoping DS gets into a great research college so he can help unravel it all for the next generation!

I think when you discover metals, your first reaction is like seeing a bug land on you "get it off! get it off!" But with metals, I think you really need to make sure the body is strong enough to handle what you're about to do it. Detoxing metals can be a very difficult process and is harsh on the body. There are things you can do on your own, but I personally think if you do it without first knowing what the body needs to handle the stress, you're not doing yourself any favors. I would wait for the 2 weeks and not try chelation without the guidance of someone who has experience with it. In the meantime, you can educate yourself on the topic. You may want to research Andy Cutler, who is a chelation guru. However, he is also arrogant and rigid - he wants people to follow his advice exactly. He is black and white and leaves little room for complex health issues. That said, he does have some valid ideas and experiences. So reading up on his ideas might be helpful. I would also read up on detox. Slow and methodical seems to yield better results than fast and furious.

I'm in New England, but you might consider Scott Smith in Edison. I don't know if others here have worked with him, but he seems to know his stuff. http://fullpotentialwellnesscenter.com/index.html