LNN

Eileen is a better one to address the ERP specifics and getting to the root of the fears. We too battle "there's a bug in my room" or "there's a gorilla in my fan". Like you, the specifics change from day to day. On bad days, my daughter won't go upstairs alone - at any time of day - because of these fears. I tell her that I would never ever ask her to go someplace that wasn't safe. But the OCD fairy will always try to trick her into not trusting me (so that the fairy gets all the attention). I tell her she must fight the fairy or the fairy will just grow bigger, stealing more and more of her fun. She needs to be the boss. I usually get a pitiful "but can't you come with me?". So I say "If I go, the fairy learns to be afraid of me, not you. She needs to be afraid of you so you can be the boss when I'm not around." I get some pathetic sniffle. If she's in a good place, she'll try. If she tries and fails, I'll do something like sit at the bottom of the stairs while she goes the rest of the way alone. My goal is to have her feel successful. But at night time...well, part of our problem is that the parents are guilty. With so many other challenges during the day, we don't have a lot of energy on this front. It partly comforts us to have them close by. But several weeks ago, we told them that on Oct 1, we were going to start enforcing new rules. They are both old enough and in good enough places that we know we need to break the bad habit that whole family shares. We will read a book, give a massage (yes, I somehow got suckered into making this part of the bedtime routine) and have pillow talk (this is the time of day where I find out what's really going on with them). Then once they're settled in, Dad or I (we alternate every other day with each kid) will leave and they will have to fall asleep by themselves. Not sure how well it's going to go, but we'll see. You're right - failing actually comes with a nice reward, so it's always been the toughest challenge. No, never used melatonin for the kids. DH used it for awhile with good results.

This thread on the Pandas forum has some links that will explain it. Scroll toward the end of the thread.http://www.latitudes.org/forums/index.php?showtopic=15005 There's a similar thread also on the Pandas forum with other articles.

So glad he's out of the tailspin!!!! DCmom is right - there are firm ways to address the bed situation. I should listen to her. But for now, we still allow shared beds. I don't have that resolve in the middle of the night. I'm a wus.

I stopped giving my kids flu shots 2 years ago, but we also have more going on than strep/Pandas. So every parent has to weigh their own health situation. Just make sure that for any vaccine you or your child is about to get - ask about thimerosal BEFORE getting the shot. Last year, I was offered the flu shot by the nurse giving DD her allergy shot and begrudgingly said ok. On a whim, I asked after that fact "They don't use thimerosal anymore, do they?" Fully expecting an "of course not". Wrong. It did contain it. Moral of the story - always ask and don't be a ditz like me and ask after it's too late.

Sounds like the referral we got from Dr. B. I left two messages with the service & never got a call back from his office. Is that normal? I don't think Dr B refers people to our doctor. I will PM you.

Ours is outside of Hartford CT. Really like him but not sure how far you want to travel. If you want details, let me know.

I stopped ALA yesterday as well. According the chelation guru Cutler, ALA is very effective at chelating brain mercury. But you shouldn't go there until you've done extensive body chelation. I'm finding so much conflicting info. So I've kind of gone into a holding pattern. Not sure where to go next. Let me know if pushing through works. I hope it does!

We're on Day 5 on 3 pills too. He ran a low fever Days 3-4. Now I don't like what I'm seeing - big brain fog, irritable, feeling "not right" - not the good stuff we've seen before. So I dropped back to 2 pills again. I'm reading mixed things about chlorella's ability to bind to mercury strongly enough and it's making me feel unprepared for the step of metals dropping. So now I feel between a rock and a hard place. Treating KPU has clearly given us huge gains. So it's not like I can stop giving what his body needs. But now we seem headed into a need for chelation that's more serious than I first thought. I'm going to look into a more deliberate chelation strategy - but for anyone who's been down this road - most chelation strategies involve a chelation agent every 4-8 hrs on weekends. Then a week-2 week break. But if you're giving CORE and this makes the body drop mercury every day, what do you do? You can't give DMSA every 8 hrs every day, I read that you shouldn't give it once a day, yet I can't just give Core on chelation weekends. It needs to be every day for the immune system to have what it needs. I feel stuck. Can't go backward but not sure of the proper way to go forward. (Don't mean to scare you Susan - just wanted to let you know where we're at - your DD may not have the mercury issue my son may have. Since getting ill, cognition issues have been a big part of his battle, so it's possible mercury has been the hurdle behind it. Throwing this out for anyone who may have better chelation perspective.)

Pure speculation on my part, but I assume they don't test for it because it's not a condition that's on their radar. I don't have the impression that KPU or pyroluria is mainstream. What little research I've been able to find in the likes of PubMed and science libraries treats it as a "pseudo-science" theory. The existence of pyroles doesn't seem to be disputed. But the resulting symptoms as a cause/effect relationship doesn't seem to be well acknowledged. If I'm wrong on this, I'd love some links. I haven't found many. That's why I was so excited yesterday when my pharmacist had heard of pyroles and made the zinc connection with little effort. Made me feel validated. Which came first? I don't know if anyone can answer that. But for my personal situation, it feels more right that KPU came first (due to frequent babyhood illnesses, intermittent behavioral issues, that "something's not right but can't figure out what" feeling I had as a mom. Then I suspect lyme came right before our first "OMG what happened to my kid" experience and Pandas came a few months later with his first strep. I don't even know if I'll feel he has Pandas by the time we're done (will that day ever come?). But I do feel KPU may be with us for life, because I feel it's always been there for us, I just didn't know it had a name. As for your own situation, only you have enough background info to decide which feels right, but try not to tie yourself in knots. It's likely a chicken/egg question that you may only be able to answer when chronic infection is gone from the picture.

I'm sure the body can resolve detox issues without needing CORE and KPU treatment. I don't think you should scare yourself into thinking that you need to test for everything that gets mentioned on forums. My personal take on Klinghardt's comment that 80% of lyme patients show signs of KPU, I interpret it to mean he's talking about the sickest of the sick, which are the patients he sees. Chronic lyme patients who by the time they see him, probably have other things going on as well. I personally don't think that 80% of the entire population dealing with lyme has KPU. Just MO. If you're seeing improvements, then maybe just get your LLMDs thoughts on this. On the other hand, it's a $70 test, so if it would put your mind at ease to check, then probably not a bad investment.

I don't know the answer yet. We just started in August. I suspect we'd do a second urine test when we get to a point where we're thinking we're at the end of treatment - to see if it was lyme-induced or life long. But I don't think you do urines throughout - the urine tests for pyroles but doesn't tell you about mineral equilibriums. For that, I know we'll be doing blood draws every few months to check the other minerals. But good question - obviously if a blood test doesn't give you a reliable zinc number, how do you know when you're giving enough but not too much. Something to add to my list of questions at our next appt. next month.

Yes, forgot about the chapped lips - that was one that stuck out, along with the dark circles/sick palor (reminded me of those threads on the Pandas forum a few years back about the 'Pandas circles" some kids had around their eyes when they were in episode). These, plus the Zicam-induced chorieform piano playing fingers, made KPU resonate with me.

It's a urine test. Looks for pyroles (or something associated with pyroles) in the urine. Zinc can show up as normal in a blood test but not be available to the immune system because it's bound to the pyroles (totally butchered this explanation but that's the gist). See the 7 min video link on the other thread for an accurate explanation.

I apologize. I did not mean to sound like I was attacking your character and I should not have assumed I knew how you felt. I'm sincerely and honestly sorry for adding to your distress.

Thanks for the link - hadn't seen this particular one before. I had a reassuring thing happen today. A few months ago, we switched the kids abx scripts to Costco because they were much cheaper. Today, I went to the local pharmacy for my own script and the pharmacist asked how DS was doing (assuming since we hadn't been there lately that he was off meds). I told him we'd discovered a zinc issue and that now things were improving. I didn't use the term KPU and he'd never heard of mauve factor. But when I mentioned pyroles and how they bind to zinc, he knew exactly what I was talking about. I explained the kids had too many pyroles and he finished my sentence - "oh, so there's not enough bio-availability. But it doesn't show up as a zinc deficiency in the blood. Makes total sense." Funny how a 2 minute conversation made me feel so validated and not crazy.

I just want to clarify something - LLMDs may not take insurance, but most give you the form you need so you can submit your own insurance claim and get reimbursed. This is exactly what Dr L does, exactly what Igenex does. So you may not get reimbursed 100%, but it's also possible you would get reimbursed for a substantial amount. The difference is that you pay out of pocket up front, get reimbursed on the back end. So the phrase "doesn't accept insurance" is a little misleading and is not limited to LLMDs. That said, you've said repeatedly that your issues with pursuing lyme run much deeper than money. For reasons I cannot fathom, given your DDs results, it is off limits in your mind. That's your prerogative. Lots of people have thoughtfully considered it and decided it's not the path for them. I only post so that anyone else who wonders about LLMDs doesn't get it in their head that it's too expensive to pursue. If anything, we've spent less money on lyme treatment that we did on Pandas. Not trying to add fuel to this fire. Only trying to prevent misunderstanding on a money issue. FWIW - we did not suffer from one tic and OCD. Ours was very TS based - vocals and motor tics. Not subtle things. Huge tics that caused my then 6 yo to revert to a sippy cup because the jerks in his hand would send milk flying across the room if it was poured into an open glass. Body jerks that forced the teacher to move him to a separate desk because other kids couldn't read or write with him shaking the table so much. I understand your focus on your own situation. But in that focus, I think you sometimes fail to realize that very few of us would consider our journeys, our high-stakes decisions, as "clear cut". We are all case-managers, like it or not. We all do soul searching, we all change doctors when it's time to change course, we all pray we're not making mistakes that will do more harm than good. Sometimes, we don't get lucky. The kids do end up paying for the risks we take. But some kids also pay the price for driving with their moms to the store and getting hit by careless driver. I think what has people upset is not that you feel this way, but that you seem to feel that none of us have also felt this way. Yet we do take those risks, we do drive our kids to the store. I know you've made an appt with an immunologist in the hopes of more testing. But I think what many are saying is that it's treatment that's lacking more than testing. What will you do with the results of tests you hope the immunologist will run? It is time to treat your daughter, if you feel it's infection based, not test her.

4 ml = 200mg, so he gets 400mg/day. I thought pills were much higher dose - what's your DS weigh and what's his dosage? Would love to have the ability to get pills

65 lbs - 4 ml twice a day. Unfortunately, that means it has to be liquid, not a pill, which is twice as expensive. Grr... Is that where you're headed?

For us, it was two things - First, DS, who had been chronically sick for 3 yrs, had a great initial response to lyme/bartonella treatment, but then plateaued and even started to backslide after 3-4 months. This was the same pattern with Pandas - initial improvement followed by stalling or backsliding. So we got aggressive with lyme - adding tindamax, switching abx - and had a horrible and prolonged herx. It sent us to look at the basics (something maybe we should have donw when we first started with the LLMD but that's water under the bridge). We looked at HLA gene, mold markers (Shoemaker's list), KPU and metals - the things that tend to get in the way of successful lyme treatment. The ones that stood out were KPU and metals - and that made sense to me, because (the is the second thing) in the past, DS had a very weird reaction to zicam (zinc). DS had some symptoms on the KPU list, but not the biggies. It was more that we needed to look at what the log jams could be. Now that we're treating the KPU, we're seeing the expected responses. He's "waking up" - is overall a different kid. But is also spiking a fever for a day or two, with lymph swelling, in close approximation to when we increase the CORE supplement. So he's following "the script" in terms of how his body's expected to respond - and this is the kid who up until now, hasn't always done that. So it feels right. Because it could be genetic, and I had zinc/illness issues as a kid, we also tested my DD, who had many more of the symptoms on the KPU list but came back only borderline for KPU. So we just started giving her CORE and we'll see what happens. I am starting to look at metals, which scares the heck out of me. I stopped by the local pharmacy today and because I hadn't been there in a few months (we switched to Costco for the kids scripts because they're much cheaper and worth the 1/2 hr drive) the pharmacist asked how DS was doing. I told him about KPU and tho he hadn't heard it called KPU, he knew exactly what I was taking about when I mentioned pyroles as a byproduct of heme synthesis and how they bind to zinc. He said "Oh, so it's unavailable- makes total sense." Funny how a small comment made me feel so less crazy.

I sent it to our school principal and school psychologist. Not because we're dealing with Pandas anymore but that's what our 504 is under. Now, maybe if they start to feel Pandas has gone mainstream, they won't think I'm totally nuts to throw lyme into the mix - just ahead of my time! Fox News ran a story about lyme induced autism today. Go figure.

These results are more "lymey" than my DS and our LLMD had no problem considering lyme despite the overall "negative' lab report. He feels IND does not mean negative for a band. "Something" made those bands change color. I personally see no need to re-test. You could instead put the money toward an LLMD appt. and get much more value for your money. While first appts can be months away, always ask to be put on a waiting list. Very often, you can get in in a matter of weeks if you're able to take the first available appt. When we first started on lyme, we had been on augmentin and Dr B added zith. That made no difference. LLMD then added bactrim and we saw a really positive response. But I think it depends on the child, the infection and the whole picture. I don't think there's any one "right" combo. Also, if you do add a second abx and hit upon a good combo, be prepared for a possible reaction called a herx (a worse before better response). You can add supplements for detox that can reduce herx symptoms.

No. Klinghardt is on the west coast. We're in New England. The drive to Bethesda was bad enough! Our LLMD is local but follows or adapts some of Klinghardt's protocols. The KPU protocol is one of them.

KPU stands for Kryptopyrroluria (aka Hemopyrrollactamuria). Very hard to find info. You can google pyroluria and find a little info on sites from intergrative doctors. You can google "mauve factor" and determine that it's a "real" condition of dysfunction in blood (heme) synthesis and is recognized by traditional medicine. But all the scientific research I've found is 30 yrs old and focuses on whether mauve factor causes schizophrenia. When that theory didn't pan out, the research ran dry. Klinghardt (and others) picked the theory up and started looking for it in chronic lyme and autism patients and they've found a high rate of incidence in this group. Here's an article http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf Here's a video from autism one http://www.autismone.org/content/hemo-pyrrol-lactam-uria-hpu-lyme-disease-and-autism-dietritch-klinghardt-md-wwwliafoundation KPU isn't a deficiency you can measure in a blood test (it's a urine test done by a specialty lab). There are sufficient levels of zinc in the blood of a KPU patient. It's that the zinc gets bound to pyroles and gets pee'd out of the body without being used, esp. by the immune system. So you need to put tons of zinc into the system so there's enough available for the body to use. But it's a balance thing. Not something to just start tossing into your kid. I think KPU is somewhat or fairly well known in lyme circles and maybe integrative circles but not in other circles, at least in my experience. I was initially cautious but this was by far the single most helpful thing we've tried in the past three years. It's not the only thing that's helped by any means, but it's at the top of the list.

Lots of kids do test positive on band 41 and not all have lyme. But you tested with a standard WB, which doesn't look for certain bands (e.g. 31 and 39) that are highly suggestive of lyme. So using standard WB to rule out lyme isn't a good measurement. If you really have concerns and think lyme is worth looking into, Igenex will give you a better (tho not definitive) picture. There's also a new lyme test coming out that cultures actual lyme bacteria, not just looks for antibodies to lyme. It's new - just rolling out now, kits being sent to LLMDs. Cost is about $500, not clear if insurance will cover or not. Given your son's tics being a canary in the coal mine, with more than just strep, you may also want to look into a condition called KPU or pyroluria. One lyme doc speculates a high number of lyme patients who can't seem to fight the lyme may have KPU. There's a current thread on the subject. It's a type of zinc deficiency that causes the immune system to be less robust and allows all sorts of bugs to set up house. Poor sleep is a symptom. Here's a more complete article http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf There's also a great video - one is 7 min long and the other is over an hour. If you look into it and decide you want to dig deeper, you can search for the videos on the lyme forum or PM me and I'll send you the links. Can't really tell you if it's something to pursue. Just wanted to pass it along FWIW. BTW - prior to our lyme/KPU dx, we did the T&A for Pandas and it was helpful. DS likely had chronic strep in the adenoids. But again, it's highly individual and you just have to trust your instincts as to whether it makes sense in your situation.

I'm sorry. No experience here. Please let us know what your LLMD says - always good to learn for future reference. Hope it clears up quickly!