LNN

Oh, for the days when being out at midnight meant we were in a bar with cute guys and good friends! Guess I know where that HCSA money is going now... Really glad DD wasn't seriously injured and the hoopla became a funny story instead of a nightmare. Just when you thought the girls were good and life was becoming boring...

Bees - I can't remember - what's your lyme situation? Your comment about a flair every few weeks and a feeling he'd backslide without abx made me go "hmmm..." I totally get your fears. I had the same ones. We did IVIG after I felt I'd exhausted all other options - that it was the only thing left and I couldn't live with the guilt if I didn't do everything. We had done a Quest lyme test and all bands negative. So I felt we'd ruled out lyme and did IVIG 2 yrs ago. It was not a good experience. It was actually one of the worst 10 weeks I've ever lived through. Turns out there was lyme and it was a long, unsupported herx. My son regressed a great deal and I'm still left with a lot of PTSD. But that said, it did not cause any long term or permanent harm (except on me). He recovered and then went on to pursue lyme treatment and has made huge strides. Looking back, we did have other options and there are other ways to hep the body. But it depends on what you've already been through and on many individual factors. Do you have the stomach for more docs, more tests? Would you regret not trying IVIG first before going down a different path? Or would you be happy to explore other things, with IVIG reserved as a "last resort"? There's no right answer (IMO). One thing works for one family and a different approach works for another family. Both may help a child get healthier. But I'd spend some quiet time really listening to your gut. Imagine the phone rings on Monday and IVIG is cancelled. Do you feel immense relief or disappointment? I can talk ad nauseum about what ended up helping my son and to do it over again, I wouldn't put him through IVIG. So if that's the sort of story you want to hear more of, PM me. But I can't tell someone else that they shouldn't do it. There are a lot of kids who've been helped with it, even ones with lyme. So in the end, you need to follow your own gut on this one. Best of luck with your tough decision...

Thank you for the article - very informative. While it does discuss risks, it also acknowledges several healing benefits. So I suppose you can take away several things from this, depending on your inclinations. It was helpful, so thanks for sharing it. You say that the supplements I mention have nothing to do with detox. Perhaps we're using the term in different ways. I view detox as everything from the point where cysteine converts to glutathione, thru the filtering processes of the kidneys and liver and to the point of excretion. Perhaps that's not the medically correct view, but that's how I'm using it. I don't have 37 years in allied health care - or any years for that matter - and I hope I don't come across as offering medical advice or like I'm trying to sound like any sort of expert. I've studied methylation and transsulfuration to the best of my abilities and feel I understand the basics fairly well but have found it next to impossible to find a practitioner who has a better understanding than I do, even tho my understanding is far from complete. I can find docs and researchers who may know a great deal about methylation or the immune system or neurology or psychiatry or cognition or....any other facet of my child's world. But I've yet to find anyone who gets the whole picture. Some autism specialists come close, but my kids aren't autistic and most autism specialists don't know lyme. And even those rare clinicians who do touch many facets are still learning - not only from peers at conferences but from parents who live and learn the hard way. Pediatrics adds a whole other layer to the problem most lyme patients face - and those layers are already pretty complex. So I have many gaps in my medical knowledge. And I would give what's left of my retirement account to any doctor who could pull it all together, see my kids from every facet and take over as case manager. But that person may not exist and I can't let my kids - and the entire family - suffer in the interim. So I spend time on forums sharing information, then spend countless hours sifting thru legitimate and illegitimate research, biases, theories and claims. I limp along as best I can and ultimately pick a doc or two to help along the way. Just as there's a great deal of disagreement among doctors, there will be differences of opinion on forums, with some choosing to try things another parent wouldn't be comfortable with. When I share my experiences here, it isn't with the single goal of fighting lyme. My kids have much more going on than a single infection. They have, at various times, gone stark raving mad, hid under coffee tables, curled up into balls in tears, unreachable, lost all social skills, lost academic skills they had a month earlier, and experienced neurological challenges you don't see discussed on most lyme forums. Some of our kids do present with symptoms generally associated with autism. They have also had awesomely normal times that I cherish. This forum represents a unique subset of lyme patients and parents. As such, we end up touching on a wide spectrum of ideas and throwing a lot of spaghetti at the walls. So yes, I try my best to appreciate what each supplement does not just in terms of chronic infection but especially in terms of neurotransmitters and physical development. Do I make mistakes? Absolutely. I think for the most part, our kids get a LOT of blood draws and do check for many things before we turn them into guinea pigs. But go search on my mea culpa posts about my screw ups. Look in my shoebox of shame - filled with bottles of things that didn't pan out, despite what a blood test suggested. Do I read about LLMDs and Pandas docs giving advice that I know to be incomplete as well? Yes. This forum sometimes serves as a feedback loop to the handful of doctors some of us end up working with. We toss ideas around, take turns digging up research, doing doctor-guided trials of various things - then talk about what worked, what didn't and then we share thoughts at our next appointments. All of us realize (I hope) that we take the info on this forum as ideas, not as strict advice or directives. For the most part, we're just moms (and a few dads) doing the best we can.

Red, I have no scientific papers on epsom salt baths, but I do know that sweating and opening skin pores can be an effect detox mechanism in general. But you say clay can contain toxins. Do you have any papers to support this? I don't use clay so I have no dog in the race but in one breath you rail against folklore but in the next breath make a similar claim against clay. I was wondering if you had anything you could share on this as it would be a really important piece of information. As for detox, I feel you can do much more than just eating correctly and keeping inflammation in check. You can check your methylation status, which greatly effects many aspects of health, including your transsulfuration pathway, which is your body's main detox pathway. You can supplement with IV glutathione or precusors to glutathione and use other anti-oxidants such as vitamin C, licopene, resveratrol... you can use supplements such as milk thistle which help clear/activate liver metabolic pathways, you can make sure your bowels are moving quickly enough to clear toxins rapidly to prevent them from being reabsorbed into the blood stream, you can flush the kidneys frequently, you can check for heavy metals toxicity...I think it goes way beyond diet and anti-inflammatories. At least, that's been my personal experience. I'm glad you've finally found a protocol that works for you after such a long battle. But I agree with S&S - what works for one doesn't always work for another. I've spent lots of money on herbs and tinctures that haven't done squat for my kids but seem to work wonders for others. It is, unfortunately, a matter of finding what works for you, with your individual genetic makeup, environment, diet, lifestyle, unique combination of infections, and practicality of a certain protocol for a child. Kids often won't suck it up and take a nasty tincture or be able to tell you how they feel after taking something. So I'm not comfortable suggesting to jjhealing that the path she's on is right or wrong, safe or dangerous, effective or ineffective. JJHealing - yes, please let us know how things go. Best of luck with the protocol.

A friend of mine has published her first book - a genuine harlequin romance with a hero who has OCD. http://harlequinblog.com/2012/09/ocd-and-believable-characters/comment-page-1/#comment-14922 « Harlequin Blog News RoundUP: September 6, 2012 OCD and Believable Characters by Barbara Claypole White, author of The Unfinished Garden (Harlequin MIRA) I use dark what if scenarios to fuel my stories. And I’ll tell you a secret: they come from events in my own life. While The Unfinished Garden was evolving, I latched on to a maternal fear I couldn’t shake. A perverted what if: What if, when my young son grew up, no one could see beyond his quirky behavior and crippling anxiety to love him as much as I did? My son has obsessive-compulsive disorder, and there have been moments when his OCD has overwhelmed both of us. Imagining him alone and unloved—I know, what is my problem—led me to James Nealy, the obsessive-compulsive romantic hero of The Unfinished Garden. Once I found James, I wanted only to create a believable character with an invisible disability, not make a grandiose statement about OCD. Popular culture often portrays obsessive-compulsives as crazy shut-ins or serial killers. Or worse, victims. Take Monk, for example, the brilliant obsessive-compulsive television detective. Did anyone see the episode where school kids laughed at him? Man, that one brought me to tears. There’s nothing typical about OCD and there’s no cure, even though fictional obsessive-compulsives often find one. OCD is a highly individualized anxiety disorder. It’s an allergy to life. Navigating an ordinary day demands extraordinary courage; fighting back demands the ability to reprogram thoughts. There are no short cuts with OCD. You want to wrestle that anxiety monster to the floor? You have to get down and dirty. In James’s case, quite literally. Dirt is his greatest fear. But James is determined to change that, and so he tries to hire Tilly Silverberg as a landscaper. He plans to watch her create beauty out of his terror, desensitize himself, and then mess around with a spade when no one’s looking. Sounds simple, right? Wrong. To understand James’s struggle, try this: Pick a fear, any fear, and amplify it to the point of debilitating anxiety. Now imagine living with that fear every second, of every minute, of every hour, of every day. Sometimes it’s background static; sometimes it’s stereo surround sound. Sometimes people understand; more often, they don’t. There’s a reason James is estranged from the people he loves. Any member of my OCD support group will tell you OCD is a living, breathing nightmare that destroys families. During the launch week of The Unfinished Garden, I woke up every morning to a tangled mess of anxiety in my gut. I tried applying some of the techniques I’d learned through my son’s years of cognitive behavioral therapy. And I failed. My son gave me lovely hugs—he’s that kind of guy—and a gentle, “Not as easy as it looks, is it?” ###### no, was my answer. But he’s learned to fight back and bend the OCD to his will. He’s also become a gifted student, an award-winning poet, and a talented musician. With a really cute girlfriend and a best buddy who plans to be buried with him. Seriously. And here’s the real reason I love James: He isn’t always successful at bossing back his OCD, but he’s brave enough to try. When Tilly needs him, he battles his fear of flying for her, and tries not to fixate on the compost under her fingernails. He’s not a victim and he’s not a psycho, although his favorite song is Psycho Killer. He’s a charismatic, successful guy who happens to be terrified of everything but snakes. Which gives him one up on Indiana Jones. Barb is extremely funny and a great ERP advocate. You can read some of her blogs here: http://www.easytolovebut.com/author/bclaypolewhitegmail-com/ If you get a chuckle or two and it's in your budget and you could use a good escape, please consider supporting her.

I have to second Christianmom's assessment and also SFMom's recommendations on the Bock brothers. Christianmom - re: the EBV - google l-lysine for EBV - worked like a charm for my DD's EBV this past winter after nothing else touched it. Also check out the selenium link I listed on the lyme forum.

Thanks to another mom who sent me a wonderfully geeky link, today's googling led me to this site on selenium and viruses. I pass it along for those struggling with viral loads...FWIW http://drlwilson.com/Articles/SELENIUM2.htm

Just my personal opinion, but here's what I'd do... I think each should be added in a small amount, waiting 1-2 weeks before adding the next item. Then I'd go back and increase dose of each item, again waiting 1-2 weeks before increasing the next item. That way, you're adding a little of everything instead of going overboard on one and nothing on another. I would start with P-5-P first, because that effects the transsulfuration pathway (detox). You don't want to improve something else only to have it get bogged down at a log jam in detox. Then I'd add methylfolate and then methylB12. The chlorella shouldn't interact with anything - only act as a binder (tho you should double check - Im' no expert on chlorella). So maybe add it along the way. So if it were me playing mad scientist, I'd do week 1 - 25mg P-5-P (or 1/3 of whatever your dr recommends for final dose for your 9 yo) week 2 - 5-10 chlorella (assuming you find it doesn't play any role in body functions and only serves as a binding agent) week 3 - 200mcg methylfolate week 4 - add another 5-10 chlorella week 5 - 1/3 dose methylcobalmin week 6 - add another 25 mg P-5-P, repeat above cycle The caveat is that once you've gotten a little bit of everything into the schedule, re-evaluate. You may not need to add any more some things. If you get impatient, you could probably add the chlorella in the same week as something else. My DD started at 200mcg of methylfolate and I didn't see a ton of change. So we eventually built up to 800mcg and a few weeks later, she was "evil child" - very unpredictable, moody, nasty, bipolar, lethargic. Turns out I was over-methyltaing her. We dropped back down to 200mcg every other day and she's much more stable. So more is not always better. I was also able to stop other supplements as we progressed. there's no easy, one size fits all answer. No matter how slow you go, you may reach a point of confusion where you don't know which supplement is making things good or bad. Is it a detox herx that you push through or an overdose of something that needs to be lowered or stopped? No good answer. Just be as methodical as you can and if things get weird, drop doses down or take a few days off to re-evaluate. But I think a little of everything over several weeks is better than all at once or all of one thing before all of another.

Thanks for the link, Red. As I was reading, I kept feeling that the article was focusing too much on one component, because I've come across dozens of things suggesting garlic's health benefits. So I was glad to see this at the end of the article: Various forms of garlic, which contain no allicin (e.g., cooked, steamed, microwaved and aged garlic extract), have demonstrated an array of benefits in studies. Therefore, it is logical that compounds other than allicin are responsible for such benefits. To date, well over 100 compounds have been�identified in garlic preparations.18 Presently, S-allyl cysteine appears to be a very promising compound with good absorption.19 The pharmacokinetic studies of S-allyl cysteine demonstrated rapid absorption and almost 100% bioavailability after oral administration. In addition, since both the safety and effectiveness of S-allyl cysteine have been reported, this compound appears to play an important role in garlic's medicinal effects.12,13 Synergism Though individual compounds, such as S-allyl cysteine, have shown activity in studies and are absorbed by the body, it is likely that a synergism of various compounds provide the benefits of garlic. This is in agreement with Dr. Koch, a renowned Austrian scientist who stated that the activity of various sulfur compounds could not alone be responsible for the benefits of garlic and fixation on a single group of components can lead to mistakes and wrong conclusions.20 All I know is that garlic has health benefits, I saw improvements from adding it to our regimen and it doesn't break the bank, so I'll keep with it. Philamom - no brand in particular. I've been happy with Nature's Bounty (which you can get at CVS) and NOW Foods, currently using Nature's Way b/c it was on sale when I placed my last Amazon supplements order (I generally order multiple things at once to get free shipping). I did mistakenly order a high dose garlic from NOW and didn't realize it wasn't odorless. I tried to soldier thru it for a week but couldn't handle the garlic-y indigestion and that jar now sits in my box of Supplement Orphans - the ones that didn't pan out but I can't bring myself to toss. Maybe I'll use it for cooking So odorless is my only requirement, not brand.

If you don't have access to IV glutathione, you can look into glutathione pre-cursors like alpha lipoic acid or SAMe, or other anti-oxidants like CoQ10 or resveratrol and Vitamins C and E.

My son also does poorly on Sacc B - it's almost like a yeast flair. If I stop the Sacc B, he calms down. It's too bad, because it's so much cheaper than other probiotics, but for whatever reason, he can't tolerate it. So we use Theralac, Truflora (2x/wk) and others mixed in. 15-30 billion CFUs/day. Like S&S, we've found that higher doses aren't necessarily better, at least for my kids. But I agree with the others - we take them religiously and I wouldn't recommend stopping them while on abx. We also use garlic pills as an anti-yeast tool - 1000mg/day - make sure you order the odorless - the regular garlic makes me burp garlic all night. When I first introduced garlic, I saw an increase in silliness, hyperness and mood swings the first week. Suspect it was a yeast die-off. Then things steadied.

This was absolutely our experience. My kids had pre-existing issues and strep was the last straw. By reducing the load caused by these other issues, the flair caused by strep is significantly less severe (plus the body is generally healthier and better able to handle illness, stress and other challenges. In that sense, I think you can "reverse" this type of autoimmunity in that, with enough time and healing and treatments aimed at your specific, individual issues, you can re-train the body to not react as severely or maybe not at all. "Cure" isn't the right word but I really agree with this way of looking at Pans.

lecithin is also helpful for lowering liver enzymes. Google lecithin+liver. Lecithin also contains elements that are thought to help nerve and neurotransmitter health.

Philamom - no need to dilute the peroxide. Just store it in a dark/opaque bottle. Light causes peroxide to break down. HopeNY - Red's strategy would not have worked for my AC units. They had never been cleaned and were 5-10 years old. Simply squirting peroxide wasn't going to remove the gunk I found in mine. Maybe in the coming years, or for a brand new unit, but not for something that's been used but never cleaned. Too many nooks and crannies and the pans on my units weren't removable. The only way to really clean them was to open the units up. I'll be taking them apart at the end of ever season from now on.

I did use the Thieves Oil but then opened up the unit and realized there was way too much mold/sludge. I ended up taking the entire unit apart and doing a thorough cleaning. I cleaned 2 units - the one in DDs bedroom survived and she's no longer coughing or congested. The other that was cooling the downstairs was older and didn't survive my overzealous spraying with the garden hose - must've gotten some electronics wet. So DH made me promise to not clean the remaining two units until we're done for the season, just in case. Hardware stores sell some sort of tablet you can put in the bottom tray that inhibits mold growth. May try that and maybe some Thieve's when we go to put the units in next year. I do use Thieve's (actually, a much cheaper knock off with the same ingredients) in my bathroom, in the shower area where mildew tends to grow in the ceiling corners. It does seem to be keeping it at bay. We have a nebulizer from when DS once had asthma and that works great (saved me from having to cough up $$ for a difuser). As for the washing machine, I use borax in the last load of laundry for the day and then use a spray bottle of peroxide, squirting the peroxide into the little holes inside the drum. Then once a year 9I use spring daylight savings weekend to keep it straight), I remove the outer shell of the washer and clean between the plastic outer drum and the inner metal drum with a sponge. The first time I did it, it hadn't been done in 12 yrs. Pretty bad. This past spring, there was only a small patch of soap scum and the start of a little yellow slime. A few wipes with the sponge and it was gone. Mine is a top loader. Front loaders are apparently much harder to clean and mold around the seals is a bigger problem. They sell a borax-like product to reduce mold but not sure how well it works. I know front loaders are better on water and gentler on clothes but after the whole experience, I think I'm sticking with top loaders.

Julie, Those on the TS board and in Shelia's book - they all talk about how electronics (TV, PC, hand helds) can induce or worsen tics. With regard to the motrin, do you think it's helping with other symptoms? If so and you wanted to continue it, one thought would be to add something to help cleanse the liver. Motrin is processed through a certain pathway in the liver, as are most abx. When my son had too much going through the liver (in his case, toxins from lyme cyst busting), his tics returned for a time. So increasing detox can help. We also decreased his cyst-busting abx (tindamax) to let the body catch up with the toxic backlog. Things that help the liver: milk thistle (if no allergy to ragweed), lecithin (also helps BBB and focus), garlic Things that help general detox: alpha lipoic acid, resveratrol, charcoal/bentonite clay, CoQ10 Alternatives to motrin: curcumin/tumeric (doesn't help my son but others feel it helps), resveratrol You can google these ideas and see if any resonate with you. I'm particularly intrigued with lecithin. Will probably start a trial of it this week. Laura

It's been awhile, but I *think* you only need to be off vitamins and minerals. I think herbals/homeopathic would be ok. After all, you get vitamins and minerals in your food. It's not like you're not supposed to consume any, just not supplement for 5-7 days prior to the test. We stopped everything except abx and probiotics and that week, my son stopped complaining about all the pills. He felt so bad by the end of the week that he was begging - literally begging - to restart all the pills because they helped him so much. So it was a good lesson for both of us. Ironically, when we stopped all supps for my daughter last month to run an amino acid urine, we found out that she was the opposite - she felt better when she stopped the pills. So we've only added the minimum of stuff back. (she was only borderline KPU last summer while my son was very positive and it's probably a lifelong condition for him). So it's a good opportunity to take stock of everything and decide what needs to restart and what you might be able to stop. I recall it taking 3 weeks to get the results.

FWIW - my son will probably be on Core or something similar for life as well. I have it too, without any chronic illness. Also, splitting the dose and giving 2 core later in the day may help with sleep. B6 is a co-factor with tryptophan to make melatonin. So you may even want to play with dosing one at dinner, one at bedtime or maybe both at bedtime instead of dinner. Keep in mind that magnesium is used for constipation (it's what's in milk of magnesia). So if you add magnesium and stools get too loose, back down on dose. I actually use stool consistency and frequency as a dosing guide (sorry if TMI).

The last I checked 2 yrs ago, the flu shot I could get locally contained thimerasol. Given the risks of mercury, especially in kids who may already have immune issues and problems with detox/methylation, there's no way my kids get flu shots. We support their immune systems with zinc, D3 and C. We use herbs like andrographis or oregano or grapefruit seed extract when they do get sick. I figure it takes a week to recover from the flu, 6 weeks to rein in a flair. I'll risk the flu.

My son also takes 2 Core with breakfast 2 Core with dinner (B6 is water soluble and doesn't hang around long. So we dose twice a day to even out the dose) 1300mg evening primrose at dinner 200 mg magnesium at bedtime (b/c we give abx at breakfast and dinner and magnesium interferes w/abx absorption, so we separate it by a few hrs). (My DS is 10, so doesn't need an adult dose of magnesium yet). He takes other things for lyme but this is his KPU treatment. As for niacin, be cautious. If you have an MTHFR mutation, you should not take extra niacin, especially not such a huge dose. Niacin uses up methyl groups, something those with MTHFR mutations are generally short on to begin with. So with an MTHFR mutation, niacin can reduce seratonin. Here's an interesting case study that talks about the need for balance and why niacin can be good for anxiety in some and bad for others. http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/ It's about balance. So if you were inclined to try niacin, start with a very small amount - like 50mg. Certainly not 3000 mg. If your DS is in a good spot, I'd leave it alone. Can't tell you how many times I've "tweaked" only to then spend months getting back to where we were.

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The only Pandas doctor I know of who does Pex is Dr L and the procedure is done in Georgetown Univ. Hosp. in DC. I've heard of someone getting it at CHOP in Philadelphia but that would be the exception, as CHOP is not generally receptive to Pandas. But before you go that route, which can be very expensive unless insurance covers it. make sure you've ruled out chronic infection, mold, yeast and/or a methylation issue. All four of these pplayed a role in my kids' health and until they were addressed, they didn't move forward. The benefits of Pex won't last if an underlying trigger isn't removed first. (same goes for chronically infected tonsils/adenoids).

It's not my quote, but I've heard several parents liken the high and giddiness of getting a script to the feeling of scoring crack cocaine. It's crude but oh so true. And congrats on college!!!!! So happy for you! Still blogging?

What may be "too" aggressive for one may be just right for another. I think it depends on what trigger drives a flair and what your overall health situation is (are you dealing with "just" strep or are there other factors, such as mold, nutritional deficiencies, chronic infections, genetic hurdles (e.g. methylation defects)... I think the one universal treatment anyone with OCD should be receiving is ERP (exposure ritual prevention). Regardless of cause or additional medical treatment, ERP is essential to learning to cope with OCD when it crops up and also provides you with incredible general coping tools that last a lifetime. When you wonder about being too aggressive, what does that mean? What is your current treatment? What is your overall health situation?

I have mixed feelings about zith as well. But I think the reason zith is used so often is that it's an intracellular abx that works in tandem with these extracellular abx.Alone, it seems to do nothing for DS. But in combo with bactrim or rifampin or ominicef, we get good results.