LNN

Came across some interesting things today and thought I'd pass them along... First, in the health food store, the clerk told me about an alternative for ibuprofen called IbuActin from Solaray. It's quite pricey - about $20 - but supposedly as effective as motrin. One online reviewer on Amazon said they had to take two pills per dose instead of one to feel relief, but liked the product. Supposedly it avoids the liver side effects of ibuprofen, but I haven't researched the individual ingredients. Second, the clerk told me about Curamin (curamin.com). She said she was skeptical but a company spokesman told her he'd take back any product of someone came back saying it didn't work and so far, no one has wanted to return it. Said it was great for pain relief due to inflammation. So FWIW... Third, in trying to help DH find options for helping him sleep, I came across a statement that said taking hypertension medications can block your bodies release of melatonin, resulting in sleep problems. I'd never heard that before - but found the same comment on wiki (not that being on wiki makes something "true"). So for any parent who's losing sleep - maybe it's blood pressure meds and not just your child's illness that's behind it. Finally, more for my geeky friends, here are two sites I found about the brain. Haven't poked around too much, but did find a nice overview of the various regions of the brain and some other interesting reading.http://gnif.org/content/view/21/40/ and http://brainblogger.com/

Came across some interesting things today and thought I'd pass them along... First, in the health food store, the clerk told me about an alternative for ibuprofen called IbuActin from Solaray. It's quite pricey - about $20 - but supposedly as effective as motrin. One online reviewer on Amazon said they had to take two pills per dose instead of one to feel relief, but liked the product. Supposedly it avoids the liver side effects of ibuprofen, but I haven't researched the individual ingredients. Second, the clerk told me about Curamin (curamin.com). She said she was skeptical but a company spokesman told her he'd take back any product of someone came back saying it didn't work and so far, no one has wanted to return it. Said it was great for pain relief due to inflammation. So FWIW... Third, in trying to help DH find options for helping him sleep, I came across a statement that said taking hypertension medications can block your bodies release of melatonin, resulting in sleep problems. I'd never heard that before - but found the same comment on wiki (not that being on wiki makes something "true"). So for any parent who's losing sleep - maybe it's blood pressure meds and not just your child's illness that's behind it. Finally, more for my geeky friends, here are two sites I found about the brain. Haven't poked around too much, but did find a nice overview of the various regions of the brain and some other interesting reading. http://gnif.org/content/view/21/40/ and http://brainblogger.com/

I never felt a herx experience from milk thistle. It only seems to help DS feel better. I started taking it as well and my body just feels like it runs a little smoother. Nothing I can put a finger on - just feel "lighter". I feel a little sluggish if I skip more than a day or two. I am on the look out for something "better". Right now, we've stopped tindamax because it was too much and the herx and related inflammation seemed to trigger two months of Pandas stuff. That has finally settled down. But I know we'll need to push ahead, so we're going to need some sort of inflammation management. On the agenda for our LLMD appt in two weeks.

We were in a bad place last summer post-IVIG and out of desperation, we did motrin every 6 hours, up to three times a day for 8 weeks. Not something I'd recommend, but we were desperate (and at the time, thought it was "turning of the pages" so didn't pursue alternatives with the doctor). As we wait for an upcoming LLMD appt, we're again needing an anti-inflammatory, but this time, giving 125 mg aleve in the morning and if needed, once more in the evening, tho I try no to. (aleve lasts longer - can give 125mg @55lbs) We also give milk thistle for liver support. Like I said, not at all ideal. But sometimes getting thru the day is a huge task.

MARCONS stands for multiple antibiotic resistant coag neg staph. It's discussed a fair amount by Dr Shoemaker - a doctor who publishes a lot about lyme and mold issues. His book "Mold Warriors" discusses it and you can find some discussion on this thread: http://www.latitudes.org/forums/index.php?showtopic=13362 Not suggesting every kid has this or if it's found, it means you have lyme. Shoemaker feels that people with immune compromised or immune fatigued systems are most susceptible. Just one more evil thing that can lurk as a chronic infection...

I think it's due to the cost $$$ Tpotter - can't believe it's been 2 yrs since we compared our sons' plasma in the PICU the way some moms compare baby pictures in the NICU! And here we are in lyme land together... So glad your DS is finally seeing results!! And that your 2 a.m. "feedings" hold such promise. We're not there yet, but hopefully, we'll both have war stories - but happy endings - when all is said and done.

I'll second (or third) what the other members have said. But then again, you're asking your question on a lyme forum. So consider our biases... The fact that your child relapses when off of abx is a clue that something has not yet been reigned in. Pandas and neuro-lyme and bartonella look very very similar. Im my son's case, he had a tick bite that we didn't pay attention to and then sudden onset psych issues a few weeks later that remitted, and then 3 months later, strep and a full blown nightmare. So we always assumed it was "just" Pandas (as if "just" Pandas were like having "just" an off day - HA!). We did the T&A, we did pex, we did 18 mos. of abx, we did CBT and ERP, we finally begrudglingly did IVIG (which is great for some but I was always reluctant). Nothing every got DS well for more than 2 months at a time. When we did IVIG, we had a horrible post-recovery. This is not the norm, even for Pandas kids who have lyme and do IVIG, but I wanted to let you know it's a possibility. $20,000 later and 2+ yrs later, when DS still wasn't following the script the way a Pandas poster-child was supposed to, we found lyme thru Igenex (had a completely negative CDC western blot and Elisa 6 months prior to Igenex testing). To be honest, we have gotten much closer to good health on a lyme protocol, but it's been bumpy and we have a long way to go. There have been months every bit as awful as our bad Pandas months. There've been months I finally saw the son I had lost. It isn't necessarily a matter of getting a diagnosis and "the" correct treatment. Lyme protocols vary widely and have varying degrees of success - very individual. Very costly. And you change your own plan every few moths due to the nature of the bacteria. So no matter which path you chose, there are both health and financial considerations. I have a lot of respect for the doctors you've worked with, but agree that they are not the ones I'd turn to for advice on lyme. It leaves you in a quandry. No single source, no one doctor who can help you unravel the thing that's plaguing your family. Try to read as much as you can, try to test as much as you can before getting on any planes. The one word of caution I have is to not forge ahead to the point that you leave your spouse in the dust. I know the urgency you feel, the fear that damage is being done and has to be stopped at all costs. But assuming you have a marriage worth keeping, it's equally important to not abandon respect for your partner's voice. Do whatever you can to advocate for your point of view, but make sure you remember to look at the whole equation. It's easy to get on a forum of like-minded people and feel validated. And I'm by no means suggesting you stop fighting for your children. Only mentioning that going a half-step slower with your spouse on the same page may be preferable to getting somewhere faster but with casualties. (sorry - just have a friend going thru a crisis with her son and her marriage is suffering in the process).

I don't believe the Augmentin XR will be any help to your 4 yo. Last August, when my son was 60#, he was put on XR. But due to his weight, he could only get 1,000 mg per day. So we had to split 1 XR tablet (which is quite large) in half and give 1/2 in the morning and 1/2 in the pm. But cutting the pill, we broke the time release coating. So he still got 1,000 mg of augmentin, but it was no different than taking regular augmentin in terms of time release. So the XR really only helps for those who weigh enough to take the full 2,000 mg/day (or 2 full pills). I don't have an alternative to suggest, other than to say that when an abx stops working, and remissions become harder to sustain, it may be worth digging deeper and looking for a chronic infection (mycoplasma, a tick borne illness, MarCONS or other sinus infection...) rather than assume an episode is due to exposure. We wasted a year making this mistake. And you're pretty far out from the time you suspect exposure (early May?). Make sure you chart symptoms on a daily basis.

We use a blend of discipline and CBT. When I know my DS has the CBT tools to control himself and yet doesn't, he has privileges taken away (like you, taking away time from a "glowing box" aka TV or computer or Wii) has the most effect. But when he does things that are out of character, he loses privileges but with a more understanding tone in my voice, with maybe a few more chances/warnings before seeing a consequence. I tend to use the analogy of owning a dog. if my dog bites someone, I still have to pay medical bills and go to court, even tho I'm not the one who did the biting. If my DS loses his temper, maybe it's the disease that was behind the damage, but DS "owns" the rage and the actions of his body and words and so has to pay the consequences. This might include writing an apology note when he's calmer, or having to do a nice thing for someone he's hurt by his actions, or paying to replace something that's been damaged. You're right, there are things that wouldn't happen if he weren't sick. But the disease isn't going anywhere anytime soon, and in the meantime, we still need to mold a responsible human being. I try to be like Ward Cleaver, kindly metting out painful but fair consequences. Sometimes I fail miserably. But in general, I probably hold DS accountable about 85% of the time as if he weren't sick and only cut him slack during exceptionally bad times and even then he has to endure a lecture once things have calmed down.

Thanks Nancy! I was hoping you'd see this post. Any recommendations on dosing, or whether there's a need to titer up? It did cross my mind that the SSRI could be activating. And that inflammation may be a factor. Her son has a history of GERD and eating issues, big time sensory issues. Yet doesn't fit an Asperger's dx and has tested as exceptionally intelligent. He takes melatonin as a sleep aid. Without it, things get dramatically worse. It's been hard to find a balance. On one hand, this world you and I live in holds so many clues and I want to share all I know, yet to outsiders, sounds so very fringe. So I've had to approach slowly, one crumb at a time. The mom is open to CBT but is going to have a lot of resistance from her son. That's why I'd love to be able to direct them toward something fairly quick acting that can at least take the edge off so CBT has a chance.

I have a friend whose son is suffering from extreme anxiety and depression. He's been on Celexa for about a year. It initially took the edge off but after upping dosage with no success, he was recently switched to zoloft. Things are still bad. My friend was wondering about GABA. I've never used it, so I thought maybe some who have could offer suggestions. Her son is about to turn 10, probably 55 lbs. Here are my questions: Can GABA be taken in conjunction with an SSRI? Do you need to taper up and down and if so, over what time frame? What dose would be recommended for 60 lbs - or does anyone have any study that discusses dosage? Any other supplements that may be more appropriate? SAMe, 5-HTP, NAC? And if something else, what are the pros and cons over GABA? Any help or links are very appreciated. This isn't an area I spent much time researching. The mom is also contacting therapists to start CBT, but I think they're going to need something to bring the anxiety down first. She tried to read "What to Do When You Worry Too Much" last night and her son made her stop. He refuses to even discuss his fears and says he wishes he were dead. I'm wondering if gut inflammation is at play, but for the moment, I'm just trying to help the mom find a life boat.

Nancy, Had I known, I'd have FedEx'd you a carton of kleenex When my kids started kindergarten, I wrote them each a letter, explaining how proud I was of them and how much I loved them for who they are on the inside. They don't know the letters exist. I plan to give them the letters when they graduate from HS. I know for a fact that your DS knows how much you love him. But our kids tend to meet with so many failures that they tend to not appreciate how strong they really are. Let him know that we're all proud of him - and maybe when he's feeling up to it - he can set his sights on speaking at IOCDF - as a success story! Hope you all have a great celebration! Laura

Jen, There are no easy answers to your good questions. But here's a few comments: 1. You don't need to be off of abx to do the Igenex basic panel. Just for some of the other panels. 2. Some people actually do an "abx challenge" for a few weeks before Igenex testing, to see if initial treatment with abx helps the body produce more antibodies that will show up in the test. So start the abx when you can. No need to wait until after testing (assuming you're testing the basic panel). 3. Which abx is very individual. Lyme is generally treated with multiple abx. You can do a trial of just about anything and if it doesn't work, you can't say that no abx will work, just not that one. For instance, my son was on zith and then augmentin for Pandas. But when we suspected lyme, he went on both for a month. We saw no change. But when our LLMD added bactrim - HUGE improvement - for awhile. Other kids respond really well to a zith+augmentin combo. My son recently switched to omnicef and it produced a big herx (8 week return of tics). So there's no single answer. 4. If there is a bacterial infection - lyme or something else, you could actually see things get worse, in a herxheimer reaction. So when you get Igenex results back, and if you decide to pursue lyme, definitely start with an LLMD. It is too complex to ask a general practitioner to manage. 5. For many people, lyme is as you describe it - bacteria directly causing problems. For some people, and some kids who may have co-morbid Pandas, we think the lyme may trigger the same auto-immune response that pandas does, and that it too may lead to the production of auto-antibodies. A few of us are seeing "Pandas"/Pitands episodes from treating the lyme and co-infections. Managing detox and inflammation seems to be especially critical for these kids. Prednisone helped my son immensely, but it is not recommended if there's lyme. So I'd hold off on that until you know which path you may be following. 6. For the life cycle, yes, lyme is said to have a 4 week life cycle. But if you also have other infections, or if inflammation is at play, then that cycle can be hard to see. I used to dismiss lyme because we didn't have a 4 week cycle, but Ds also had bartonella, which has a 3 day cycle. And he struggles with pitands reactions that can take weeks to subside. So it can all blur and not be nice and neat. You can contact ILADS.org for referrals of LLMDs in your area. Or you can post your regional area and maybe some here can offer suggestions. The waiting list is often 4-6-12 weeks for an appt. so you may want to make one now. You can cancel if the testing all comes back negative.

We had a very rough time post-ivig. it took 10 weeks before he started to come out of the tail spin, another 4 to stabilize. When he didn't respond the way we expected, we tested for lyme via Igenex. Standard western blot prior to IVIG had been completely negative, but Igenex showed lyme. Initially, treatment for bartonella/lyme brought amazing progress. It's been a bumpy road since, but detox is crucial. My son has really struggled whenever we've been aggressive (IVIG, tindamax abx for lyme). So we're now testing to see if he's genetically predisposed to having trouble shedding toxins and fighting bacteria (see the HLA-DR4 threads on the lyme forum). If so, our plan will have to be much slower, with a much greater emphasis on supporting the body and managing inflammation. My son was also a big ticcer. Ibuprofen/aleve don't help the tics, but they help mood and take the edge of behavioral challenges. Only time and detox help the tics subside. For us, subsequent IVIGs aren't part of the plan. It's more than he can handle. I don't mean to be negative on IVIG - I know it's very helpful for many. Just wanted to mention the HLA-DR4 genetic aspect in case that helps. 25% of the population has this genetic variant. So if you're concerned, it may be worth testing prior to the next IVIG (test must be done by Labcorp). You can PM me if you want to discuss further. Laura

Julia, Curious about niacinamide - have you started using it? Can you tell how effective it is? What are the pros/cons compared to ibuprofin or naproxen (aleve)? We seem to be struggling with quite a bit of inflammation-related issues (Pandas behaviors) likely triggered by too strong of a herx. Waiting on our own results for HLA, MSH et al. But need to discuss anti-inflammatories at our next LLMD appt in a few weeks and looking for input. Any help (from anyone in the peanut gallery)is very appreciated. (tumeric hasn't made any difference, aleve helps alot - just not enough). Laura

Thanks for posting! And I thought I was anxious for our lab results before I read this...

Bactrim causes photosensitivity. Probably a reaction to being out in the sun. not sure what you do once it happens - but it sounds more like a sun issue rather than an allergic reaction. It's possible it's a herx rash. Take photos and then maybe call your LLMD.

I'm not trying to ring alarm bells - just wanted to pass this along for whatever it's worth. My neighbor told me yesterday that her son has nephropathy - an autoimmune disease that effects the kidneys. Blood in the urine is one of the symptoms. Poor kid is on prednisone for 6 months. I'd never heard of it, so I pass it along just so you can rule it out. http://rarediseases.about.com/cs/iganephropathy/a/042002.htm

Is there a way to get a listing of videos that are available? I see a "recent videos" scroll bar, but only a few videos are listed. I'm struck by how many of the topics are "cross-overs" between Pandas, lyme and autism - brain chemistry, immunity, detox, inflammation...it's almost like its all the same thing...just a matter of degree.

I know your Pandas doc is hard to reach, but it may be worth a very brief email on Tuesday asking about this symptom, given that it's happening in the middle of sound sleep. Sleep cycles are generally 90 minutes. If you happen to be awake, making note of how far apart they happen would be helpful. If they happen every 90 min, it could be part of a dream cycle. But if they happen throughout the 90 min cycle, that could mean something entirely different. I think your best bet is to get the doctor involved if you can.

Oh sure - serve up a little guilt for breakfast this morning! Congratulations!!

Wilma, Like Philamom, my son can have an excess of energy - almost manic at times - especially when he's in a period of herxing. Fatigue is listed as a common symptom of lyme, and my son does have periods, particularly at night, where his body is just drained. But it's not a constant thing. Also, when looking at lyme symptoms, there seems to be a different list of symptoms, or an emphasis on different groups of symptoms, when you compare the "common" musculoskeletal lyme vs. neurolyme. Both neurolyme and bartonella are blamed for many of the psych symptoms our kids seem to battle. I doubt your daughter is going to fit neatly into any one illness, particularly if there's a pandas auto-immune reaction in the mix. I don't have any experience with your doctor in MD. I have heard mixed opinions on other forums. It is strange, IMO, that with all of your daughter's psych issues, bartonella wasn't tested for by the LLMD. I know initial consults are expensive, but it may be worth considering a different LLMD. I think you need someone who is known for a slow, gentle approach with lots of detox. I know you are so tired. But this is a long, peeling the onion process, and you should be proud of yourself for coming this far.

It must be so scary going through this- and of course, it's on a long weekend. I'd certainly call your LLMD on Tuesday. In the meantime, keep detailed notes, not just on the symptoms you see, but on your thoughts, such as the fact that it happened once before, etc. I don't know that there's a way to tell the difference between a herx and a reaction. How quickly things resolve will be one important fact. You might also want to talk to your doctor about what you can do to minimize herx reactions (clay? glutathione? other detox agents?). It's possible the change in abx dosing (different zith schedule + adding flagyl) is a factor. Unfortunately, lots of questions that only time and observations can answer. But I'd keep asking those hard questions. It's so tempting when you're so worried, to explain away what you see, so that your mind can be settled. But revisit these questions often. I've sometimes explained away something only to have it rear up six months later and then realize my explanation to myself had been wrong, or incomplete. When he sleeps at unusual times or for prolonged periods during the day, just make sure he can be roused. Scary stuff...you're in my thoughts.

http://www.eytonsearth.org/drinking-clay-internal-use.php I found this interesting. It discusses constipation as well as a gradual build up when starting clay - few days on, few days off.

You may want to do a little research on myoclonic jerks. They're not specific to any particular disease. Anyone can get them (I usually get them once in awhile just as I start to fall asleep - maybe 1-2 times a year). If they happen frequently, they can be an indication of something neurological, but are not diagnostic in and of themselves. Maybe see if you can find something on youtube to see if this matches what you're seeing.