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My DS tics when his body can't get rid of toxins quickly enough. So when he's fighting a strep infection, a yeast infection or when we hit lyme really hard, he ticced until the scales tipped in his favor and the toxin load got light enough for his body to keep up. So if you're killing strep and the strep bacteria is releasing toxins as it dies, and your DS is struggling to detox, it might be causing neuroinflammation and messing with signalling. Even with methylation support, my DS tics when his body gets overwhelmed. But the tics go away once he gets healthy again. For me, his tics are the canary in the coal mine. But once we get ahead of the infection, they start to subside (tho they often takes longer to completely go away than the other PANS symptoms)

For anyone who's interested: Dr. Jess Armine has been treating mood disorders with Neuro-Endo-Immunology and nutrigenomics for almost 20 years. Tonight he will discuss the root causes of mood disorders and how neurotransmitter balance, inflammation and methylation may be involved. Dr. Jess loves to explain complex concepts in simple, easy to understand terms and he is excited about discussing this subject with his listeners. Look for the pdf file that will accompany the discussion (will be available by Monday, 11 /18 /13 by going to www.drjessarmine.com and clicking "Radio Show") Join us and learn that mood disorders need not be insurmountable, lifetime problems!!!! http://www.blogtalkradio.com/drjessarmine/2013/11/19/mood-disorders-neurotransmitters-inflammation-methylation Don't have any experience with the doctor but thought it might be helpful to listen...

Have you run your raw data thru geneticgenie.org? Follow the steps in this thread and it should give you your VDR status (23andMe does test for this). http://www.latitudes.org/forums/index.php?showtopic=3928&page=2 read post #18 23andMe keeps moving the "download raw data" option around on the menu. Currently, go to the upper right corner of the home page where your login name appears. Click on your name and get a drop down menu and select "browse raw data". When you get to that screen, in the same upper right corner, you'll see the option to download your data. Follow the instructions on the above thread from that point. VDR is the gene that enables your body to take Vitamin D3 and convert some of it to dopamine (D is also used by the immune system and bone strength, but VDR is the gatekeeper for how much goes toward dopamine - at least that's my layman's understanding). If you have a VDR Taq mutation, you don't make as much dopamine as you would if you had no mutation. So your initial assumption would be that you'd need to supplement extra D3. However, your COMT gene plays a role in how quickly your body degrades dopamine. So you need to look at the status of both genes before making any decision about supplementing Vitamin D and how much. The heartfixer document link in the above instructions goes into great (and confusing) detail on this. Be prepared to re-read it many times before it starts to make sense. But excess dopamine can be a problem in our kids, which is why it gets discussed often.

It went thru this time.

My two cents - you like Dr Taz, have had good results with her, she's open to Pandas and willing to help treat. Since you dont' want to do long term abx (and I understand why - we're fighting fungal/gut repair after 4+ yrs abx for lyme/Pandas), I think your current doctor is going to be as helpful as any of the others. The others on the east coast all use long term abx as a major component of their protocols and aren't (IMO) as up to speed on methylation, diet, gut etc as your doc seems to be. The one possible reason to see someone in addition would be if you decide to pursue IVIG and your current Dr can't help in that area. But I don't think the well-known specialists have any sort of monopoly on the "best" way to treat Pandas. Many see them more because they can't find local support. But you seem to have that. As for the sudden onset - in the NIMH site http://intramural.nimh.nih.gov/pdn/web.htm you'll see the criteria for the first episode is an acute onset, but look at the graphic of the saw tooth pattern of relapsing-remitting symptoms. You'll see that over time, you aren't expected to return to a baseline of zero symptoms. So you don't necessarily go from 0-60 in 2 days. You can go from 30-60 quickly. Also, if you have not only a sudden onset strep infection but also a second chronic infection (eg lyme, mycoplasma, mold exposure), and that second infection has a life cycle, you could see a different pattern of reactions. For example, lyme has a life cycle of 3.5-4 weeks. So you could see a worsening once a month and not understand why. Or you could see a worsening when it rained or got humid and mold spores grew more rapidly. So while the sudden/acute onset is meant to help doctors distinguish between Pans and garden variety (Ha!) OCD or TS, I don't think I'd dismiss a pattern that took a few weeks to peak. There are infections/triggers that could explain that pattern. Also, even if it's just strep as the trigger, it seems your son might be a carrier, since he doesn't show symptoms. So its possible his immune system is responding but then gets overwhelmed, resulting in a crescendo pattern rather than an acute pattern. Like I said, with what you've explained, I wouldn't discount Pandas on this one thing alone. The "proof" will be in how he responds to his current treatment for confirmed strep. Tics may not disappear quickly, but they should diminish as the infection clears. (as someone else suggested - re-test a few weeks after abx to make sure it did clear). Kudos to you for doing so much to heal him already! Hopefully the abx will help him recover!

Tried to PM you but it says you can 't receive messages. Is your inbox full? If not, maybe PM me your email and I'll send you a message that way.

I'm so happy for you! Especially the writing professionally part!!! Yay you! A few of us here have seen an ENT in Hartford who's at least heard us talk about PANDAS and he agreed to my son's T&A based on his dx. I'll PM you his name.

Metals and parasites were not problems for us (we did some very brief chelation but nothing of significance). I do wish we'd transitioned to herbals about a year sooner than we did (did abx for 2.5 yrs) but no, to do it again, I'd still do abx first and work on other things at the same time, then transition to herbs over time. DS was in too bad a place by the time we discovered lyme and we needed to get it under control. I'm not sure everything Klinghardt advocates is practical for kids. JMO.

I approached in this order: CBS MTHFR + COMT + VDR (all 3 relate to each other in terms of which supps to use) MAO The rest I sorta kinda paid attention to but didn't do any supps or changes for these specifically. I just couldn't justify adding any more pills. For me, these became the "things to look at if the first stuff doesn't get the job done." and the first stuff did get the job done, so I never re-looked at the others. And I only did a few of the things heartfixer and yasko say to do for CBS. I personally found MTHFR and COMT and VDR had more influence over the neuropsych stuff. For tonight, read heartfixer on the first four and PM me with the issues DS struggles with and I'll try to shoot you some thoughts tomorrow (need to herd the kids into bed now).

I try to be balanced in my opinions and I don't think every tick bite results in Lyme. I can see why the previous docs didn't treat. But a few things stand out: 1. you had sudden onset 2. she has off the charts Cunningham labs 3. She isn't responding to mono abx therapy or steroids or T&A yet the clinical picture all supports an infection-triggered, autoimmune/misdirected response with neuropsych symptoms that aren't responding to Pandas treatments. Framed this way, I'd agree with the LLMD you just saw and try a lyme treatment to see where that brings you. As this can be expensive, I also tend to agree with her that additional testing isn't where I'd put the money. You have a doc who's willing to treat. She will likely rotate abx, some of which may also be those used for the more neuro co-infections like Bartonella (e.g. bactrim and rifampin). What will additional testing get you right now? Maybe if you need to change docs, but for the moment, I'd put the money toward treatment. The one thing that does concern me about your LLMDs plan (and maybe you just didn't list it) is that I wouldn't start will all three abx in the very first week. Hopefully, she means for you to get to this combo in a stepped manner. A general rule of thumb is to not start more than one new things at a time or you don't know which of the new things might be causing a problem. Introduce new thing 1 for 2 weeks and if tolerated, introduce new thing 2 for two weeks and if tolerated, then new thing 3. Now, this may be different with those docs who use a pulsing protocol but I think it's worth asking her about if you haven't already discussed it. The other thing that gave me pause was adding flagyl so early in treatment. Cyst busters can pack a real whallop on their own. If your DD flares from the other abx, then I'd want to hold off on adding flagyl for many cycles, at least until you weren't seeing huge herxes from the pulsing of the other 3 abx. I'm no expert on pulsing and ye I know it really works well for some people (if you can stand the first 2-3 cycles which can be really ugly). So I raise the issue not to sound like some know-it-all but only as things I'd want to understand as a parent and know what to do if/when I saw severe herxes. I'd read the pinned lyme threads at the top of the forum, where you can decide for yourself about bands and various tests. But I come back to "what you've done hasn't worked, yet the clinical picture suggests chronic infection". So give it a try and see. But do ask questions and be comfortable with what you're doing, why and what to do under various circumstances, just so you're not in a bad place on a weekend with no doctor easily reachable.

I think it depends on who you ask and how long ago they had IVIG. There's a group who swears IVIG is the single most valuable treatment they've ever done. Some say this for the first few weeks/months and then don't sing its praises quite as strongly later. Some remain stedfast in their praise. A few even achieve years worth of recovery with only one IVIG. Then there are some who've had mixed results. And there are a few, like me, who only saw bad and then a slow return to baseline, with no gains. But then, my DS had undiagnosed lyme at the time and perhaps the silver lining was that IVIG made his immune system strong enough to actually create lyme antibodies and enable us to get a diagnosis. (so maybe it was worth it despite the ugliness at the time). I do believe there are a few stories of complete success with only one, but I personally feel they're the exception, not the rule. I can see how it's valuable for some kids. But I do not see it as a cure. I see it as a tool and not the right tool for every situation. JMO.

Ditto. I wouldn't treat either. Homeopathics never helped us much but they seem to be just the right thing for your DS. I'd leave things as is.

Most LLMDs use one abx that's intracellular (zith) and one that's extracellular. We stayed on zith the whole 2.5 yrs we treated. We then rotated extracellular abx like rifampin, cefdnir (big herx, crosses the BBB, but also big gains), bactrim, augmentin. We didn't use dorxy b/c he didn't have many adult teeth yet. DS could not handle tindamax - not even half doses or only one day/wk. We tried it twice. The supplements that helped most were Core (zinc+B6) from Biopure, a B Complex that had the right combos/doses for his methylation issues (for him, a decent amt of niacin to calm the anger and adenoB12 to help with overmethylation), Vit C & D3, magnesium and milk thistle. We used many other supps over the years, some helped for that moment, some didn't help much or it was hard to say. We used daily motrin for a long time (he can't tolerate curcumin). While I wish we'd have been able to use tindamax longer (5 weeks was our longest stretch), he did get well without that on board. If biofilms/cysts remain an issue, you can also ask about nattokinase or NAC, which as mucus thinners and can eat away at the films. There are options. FWIW - DS used to have horrible rages, very argumentative, had to be right, controlling, "scripted" everyone else's actions...he was a little dictator. Now, he's generally able to let things slide after a mild protest, able to accommodate opposing views and does what he's asked without it being a major confrontation. Some of it's maturity but most of it's recovery. Ian won't be incorrigible forever. You'll find the right blend of things for him and get him back. Persistence pays off.

CamK does go up and down - it's a signaling mechanism and fluctuates. You might want to PM EAMom - she tested her DD over multiple periods of illness and health. The test, even after 3 yrs, is still significant b/c it shows an autoimmune/inflammation response. But I wouldn't think you need to do it again to "prove" Pandas. Is high CamK enough to warrant IVIG? Depends on whose protocol you follow. The researchers have only used IVIG to end a flare. So if you're not in a flare, IVIG wouldn't be warranted, regardless of whether you have Pandas as an underlying condition. Other docs believe you should do IVIG every 8 weeks regardless of if you're in a flare, in order to build up the immune system and water down the levels of renegade auto-antibodies. But under this protocol, I don't think your current CamK level would matter.

We used it for the first 6 mos of lyme treatment (which was 2 yrs after we learned about Pandas). It didn't do much for DS, but I realize that he was in a bad place then. So it's possible that if you started it before a flare, you could possibly limit/reduce/prevent a flare. But it wasn't helpful for us in stopping a flare. ALA is a glutathione precursor, so it should in theory help with detox/oxidative stress. It did not help us with tics, which for my son, is a sign he's note detoxing well. But again, when you start using it may make a difference. Two potential negatives to be aware of - ALA falls into the same category as NAC - a high sulfur that, according to the heartfixer document http://www.heartfixer.com/AMRI-Nutrigenomics.htm should be avoided by those with CBS mutations. Second, ALA has an affinity for mercury and is used as a mercury chelator. Andy Cutler, the mercury guru, warns his followers to make sure they chelate with DMSA for many months prior to starting ALA. He says this because ALA crosses the BBB and DMSA does not. So if you remember your science class about osmosis, you;ll also remember that things will move from a heavily concentrated area into a lightly concentrated area. Cutler says make sure that the body side of the barrier is chelated and made into that lightly concentrated area before you start using ALA. otherwise, ALA will bind to mercury and move it from the body (if it's the heavily concentrated area) and into the brain (if that has less mercury poisoning than the body area). instead of the other way around. In other words, if you're battling mercury poisoning and start ALA before you chelate it out of sick body, you'll inadvertently move it into the brain instead of out of the body. I know of no research to support this one way or the other. Cutler is extremely opinionated and feels he's absolutely right on this, but I can't say one way or the other. I just raise it as something to look into so you're aware of the cons as well as the pros of using ALA. Finally, when ordering, realize that there are two ALAs - Alpha Lipoic Acid and Alpha Lineoic Acid. So just double check you're reading about and ordering the ALA you meant to order. Yasko's videos talk about the BBB and I think I recall her talking about ways to strengthen the BBB but it's been almost 2 yrs since I watched the video and will have to see if I can find out what she liked. It wasn't ALA but I want to say it was related to phosphatidylcholine. Maybe someone who's more current in their Yasko studies can chime in. My one take away when I studied all this was that if there were an easy way to tighten the BBB, we'd all be doing it and Pandas would be a non-issue. There are things that DANs and LLMDs like to use that may help in theory or around the edges. And they may be worth trying. Sometimes people find a home run supplement that works miracles for them but not for others. (zinc was this thing for my DS but didn't pan out for others). As long as you don't have a CBS or known mercury issue, i think it's worth trying. You never know where your own miracle may be. But maybe buy a small bottle the first time around

You can turn sero-negative after a period of time, even if the infection is still there. From a symptom standpoint, sounds like something is still brewing. We have a great LLMD in CT if you decide you need to travel. PM me if you want his name.

I'm glad they at least stuck around the conference long enough to have this realization. I was disappointed to hear that most left before the lyme presentations.

There is supposedly an at home spit test you can do - spit into a glass of water first thing in the a.m. before getting out of bed. If the spit dissipates, no yeast, if it gets stringy, yeast. Google "yeast+spit" and you'll find details. Not sure if it's accurate. You can also do a blood test for antibodies to candida albicans. But candida isn't the only fungal infection you can have in the gut, so if you get a positive, you're good to go. But if it's negative, you may have to test for other fungii. Like SFMom, we've done a stool test. I can't recall which lab we used - genova maybe? - but they had a deal where you pay $99 up front and they bill your insurance but you don't have to pay anything more regardless of the insurance outcome. We did the kit thru our LLMD. It showed negative for candida but high for Sacc. B, which is a problem for DS (even tho many here take Sacc B as a probiotic). It also showed us some nutritional absorption issues and borderline dietary issues. We've been treating first with diflucan and now with nystatin plus colon cleanse plus reduced carbs/sugar plus probiotics high in bifido cultures. We've also used odorless garlic daily (but not using right now). Years of abx have made this a bigger project than I imagined.

Enhansa is the brand that gets a lot of good press - Lee Silsby is the compounding pharmacy. Covered by insurance, costs about $30. Many love it and have been able to move away from motrin. Neither of my kids does well on it. One has a CBS mutation, so can't handle the added sulfur in curcumin. Makes her very moody, up and down. The other has an MAO-A mutation, meaning the rate at which his body degrades dopamine is inhibited. Curcumin is an MAO-A inhibitor, meaning it too slows down the rate at which your body degrades dopamine. (making it a potentially mild anti-depressant). So for him, curcumin compounds the inhibition and leaves way too much dopamine hanging around, which makes him very quick tempered and angry. So as with most things, it's an individual thing. Could be awesome, could be problematic. You may just have to give it a try to know. If you do use it, start low dose - 250mg/1 pill per day for a week, then go up to 2 pills/day. Some move up beyond that. Because it's a natural MAO-I, don't take it if you're taking an anti-depressant without discussing with your dr. and don't take things like cold meds or cough meds if the label says anything about MAO-I's.

Both my kids had it done when it was a research study (which was expensive back then, but nothing compared to what it is now!). Can't speak to turn around time. Both their results came back "highly likely" yet DS ended up having lyme+Pandas and DD's "cure" came from treating methylayion, not from abx. So "Pandas" was only part of the problem. They were both on abx when we did the test. Was it helpful? At the time, yes. It made me feel less crazy and helped me approach doctors and the school with confidence. But it didn't end up being the final answer for us. We still needed to go on and test for lyme, test for a zillion other things. It's a huge amount of money and if I were faced with the same decision now, I'd put the money toward doctors and treatment. If the test were half the price it is, I might have a different opinion. Is it helpful? Yes. Is it $900 helpful? It depends on your financial situation, but for me, no, it's not where I'd invest my funds.

Didn't use 5-HTP but did use tryptophan for anxiety for @12 mos. Didn't ever help with tics caused by herxing. Detox was the only thing that helped then. Taurine is also supposed to help ticcers but doesn't do much for my DS. Has your nephew ever been tested for triggers like yeast, metals, mold? Make sure he's having daily BMs. Is he close to any of the integrative docs on your team? They might have some good tools.

My first suspicion would be the florastor. My DS cannot handle Saccharomyces-boulardii at all (the yeast that's in florastor). It makes him very angry. So I'd suggest stopping that and using a different probiotic. (Theralac, CP-1 and Kirkman's Bifido Complex are all high in Bifido bacterias, which is what mother's milk contains). Unlike Florastor, these are sensitive to abx and need to be taken 2-3 hrs away from abx, preferably at bedtime or a time when stomach acids are low (i.e. away from meals). It's possible it could be the augmentin and that it's killing an infection, giving you a herx. But the rage makes me suspect the florastor, especially since she was complaining about the smell of it. Sometimes they have almost a 6th sense of what to avoid. If you stop the florastor and still have issues after a week or so, then consider the augmentin, or consider yeast. Yeast infections can trigger anger as well as age-inappropriate silliness and foggy thinking. Some docs use nystatin on a regular basis. So something to add to your list of questions for the next time you consult with the dr. We've used odorless garlic capsules as a daily yeast preventer as well.

I wouldn't call it a herx. Herxing is technically only from the toxins released by spirochettes (lyme or syphilis) and we use the term more loosely here to also apply to the toxins released by other dying bacteria or fungi (e.g. yeast) or parasites. But I don;t think I'd use it for a vitamin. Two thoughts came to mind - like Pr40 suggested, one possibility is that your child needs a different form of B12. There are 4 I know of - cyanoB12 (which is widely used in mutlivitamins and is a pretty poor form), adenoB12, hydroxyB12 and methylB12. I believe - but am not sure - that the shots are usually methylB12. Not everyone does well on methylB12. The other thoughts I had was that if you have certain genetic mutations, you may also need to be supplementing methylfolate - a specific form of folate (vitamin B9). B9 and B12 work together as co-factors to make multiple things happen in the methylation cycle. If you only take one without the other, you can develop what's called a folate trap. This causes homocysteine to build up and could "clog" your some of your detox pathways. My son develops tics when his body is trying to rid itself of toxins and can't do it quickly enough. So it could be the form of B12, a lack of the correct form of folate to go with it, or a problem with a detox pathway. What sort of doctor are you working with? Would s/he be able to explore the issue with you?

FWIW - tumeric produced anger in both my kids. Rowingmom - Walsh's book is a validating message and a good intro to the concepts of how methylation can effect moods, neurotransmitters, etc. If you're new to the topic, it's a good explanation of why it's worth pursuing. However, IMO, it's not helpful if you already understand the concepts and have moved past the need for intros. Walsh was a pioneer on this topic decades ago and I was excited to read an update. I respect his work. But it was as if science hadn't moved forward and he was updating using his old terminology. It felt like he, the pioneer, was now behind the times. For me, it was like Chinese food - enjoyable, but left me hungry at the end. A good and simplified read for those who want to get their feet wet. Curious to hear Ozimum's take.

MY DS could never handle tindamax, not even pulsing 1/2 doses on just the weekends. We tried it for 5 weeks at the peak of lyme treatment and had to stop (but saw awesome improvement afterward). We tried it once more at the end, just to see if there were any cyst forms left, and he again reacted badly. The decline wasn't worth it. He was basically symptom free. So I tend to think it had more to do with his body not being able to handle something in tindamax rather than it being lyme related. We never figured it out. We just stopped the tindamax and he went off all abx shortly after that. He is struggling with yeast right now, but other than that, no signs of any residual lyme. I'd think if the tindamax was a herx response, we would've seen a return of lyme symptoms (he's been abx free for 8 months). So I don't have any scientific input, just an anecdote that my son doesn't seem to be able to handle tindamax regardless of whether lyme is at play or not.