peacebstill

HI, I just watched the video, do you have a link for the written article handy? Thanks, Jennifer

Hi All, Thank you for all of your posts and PM's! We've been away for awhile but I wanted to take a moment to update. Our son did a 10 day course of abx. While on it, new tics and an increase in old tics was noticeable. It's been 2 days since he's finished the course and it seems as though the tics are calming - not gone - but slowing down a bit (still a lot of stuff going on). So now we continue to observe and we'll have a follow up with the pediatrician in a couple of weeks. Question: To get IGENIX testing done - do you send away for a kit or is it possible to get one from a doctor or naturopath? I looked at one of the lab test forms and there seemed to be a lot of options to check off - what do you do when checking for anything relating to Lyme? I have posts and PM's to catch up once vacation is finished, thank you for taking the time to share info and helping to connect more dots. Thank you, Jennifer

June 18, 2011 - an update (I like your numbering system LLM and am following suit, thanks!) 1. Neurologist report - our son does not have PANDAS and he declined to treat w/abx - maybe he's right - maybe it's PITAND or LD or something else, is it ever "just tics?" I have my hunches. Neurologist boiled it down to our son just has tics and he believes they will go away by puberty...Would it be more correct to line up with PITAND moreso thoan PANDAS? Actually, I'm wondering if LD caused the initial infection which led to PITAND/PANDAS. 2. Pediatrician is willing to try abx just to see what happens, will start on Monday, 10 day course, have follow up appt a monh later. Also did strep test. I'm curious to see if there is any reaction to abx whether it's nothing, easing of tics, or herxing. If herxing, I would be curious if it is related to die off with LD? Last year when we gave our son abx (after having the flu, bad colds that lasted for weeks etc., it was 10 days later he started having tics. I'm curious if his excessive/huge head nodding at that time might have been related to LD? Herxing? Only curious...... 3. Canadian Lyme Test came back negative...would like to do test offered by IGenix...but meanwhile, stepping in right directions to help our sons body be healthy, rested, supplemented etc. That's all for now, always searching for connections and footsteps from those who have been here before..... Jennifer

A little more help for clarifying? I'm feeling very slow to understand the difference! PANDAS - associated with Strep A only? PITAND- associated with any infection - wider umbrella? could be triggered by an inital strep or any infection? Paediatric Infection-triggered Autoimmune Neuropsychiatric Disorders Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci If connected to or caused by LD...would it be more right to line up under PITAND than PANDAS? Jennifer

Thank you for sharing. I PM'd a note to you as well. I hope you will keep us posted with how the treatments go. I'm encouraged to go ahead and take the neurologist up with his offer to give abx for PANDAS since it can be difficult to abx prescribed for LD. So whether PANDAS or LD or both, abx might or might not have an effect and this will be interesting to see. I'm looking into both conventional and alternative/natural treatments for LD as well. I'm starting to have a hunch that LD has been the cause of PANDAS for our son -am I erring in making that assumption? Anyone who sees this stuff plainly you are very welcome to chime in! Thank you!

Thank you for your post and information. From what you shared, it looks like taking abx isn't a concern with regards to LD testing. We're kind of in a funky space of waiting and figuring out what to do for our son. I'm doubtful we're going to be in touch with any doctors or specialists who are literate about LD or have any understanding of PANDAS. However, if anyone knows of anyone who we can contact in Ontario, Canada before July we would welcome the connection - then we'll be moving around a lot and it will be awhile before we settle. Thank you for the information and connections, I really appreciate and will be following up with it.*ILADS/CanLyme wrote back within minutes of making a query....wow, that was fast! My question for the day is - Where do we start? 1. Both neurologist and family doctor "doubt" he has LD but both admit they aren't too familiar with LD. Our sons test results will be back in 3 days. This test has not be known to produce positive results, if however it does, then family doctor says she will have him do the Western Blot test. If abx isn't going to influence any of the testing, maybe we should go ahead and start treating for PANDAS? 2. The neurologist is willing to try abx for our son for PANDAS. His approach to PANDAS is measured reserved and is skeptical - nevertheless, he is willing. What do I need to be aware of and advocate for? What are the important questions I need to be asking? Side effects or signs I need to watch for? Thank you!

Hi, Someone had suggested to include my post below from the PANDAS board over here on also. Tomorrow we're visiting our family doctor to look into the possiblity of Lyme's Disease. Later this week/next week we'll be looking into abx to treat son's tics. I undertand it's a good idea to do a throat swab and IGENIX test kit before starting abx for either of these two possiblities. If our son does have LD, I'm hoping we could be connected with a LLMD. My rambles are below - if anyone feels like they have good connections/advice/re-direction for me, please do share! Thank you, Jennifer ----------------

Thank you for sharing about your family's experiences and showing me what it has looked like for you, and what you have been learning through it all. I was curious, could there still be a herx effect though for PANDAS/abx too - tics getting a little worse before better? I'm learning a lot about LD and its processes and treatments - from abx to alternative protocols. There's a lot of dot connecting going on and I hope for it to be done well. Hoping right along with you, Jennifer

Thank you - and are all the courses the same? How does it start and end, what are we watching for - the tics to cease? Will it be for just 5 days or do you keep going until you reach a certain point? Some of the liquid suspension of abx contain asapartame - is it ok to crush the tablet which does not contain aspartame and mix it with yogurt? Equip me! Thank you, Jennifer

It is good that you are posting. You have much going on right now. If you've not done so already, you may want to copy this post onto the lyme board. They will have good advice for you. I would find a lyme doctor if I were you. If you start on antibiotics right now, it could have an effect on your lyme tests, as some antibiotics put lyme into "hiding" and make it harder to deterct.... so I would proceed with caution until you get to a lyme doctor or do an igenex test. --------------------------------- I was thinking this very thing. I have an appt tomorrow morning for LD but just family doctor for now. I was hoping to explain the directions we're heading in and ask her to take a throat swab - as review the notes from last year when he was last prescribed abx. My friend also happens to have an IGENIX test kit handy and said we could use it. We haven't scheduled an appointment for abx with the neurologist yet or asked him further about the protocol he has in mind - need to learn more and ask more questions. We're waiting for his office to call back this week. We haven't seen our family doctor since she began referring us to specialists, I think I'm gonna have to catch her up to speed with the direction we're going for PANDAS. Does anyone have a standby list of points to walk someone through? I like breaking things down for others and making it plain, really simple - perhaps a contradictory but this is what I'll be putting together this afternoon and add a few articles as well for her reference. Thank you everyone for your replies, we can do this together, thank you..... Jennifer

Hi, Someone had written on another post that they wished that people would update their posts so they could hear about how things have progressed. So, I will write a little and ask some more questions as I forever dig and research for more answers. We had a great few months in Feb/March (still had tics each day, but weren't intense and were barely noticeable), but since mid March, our son's tics were consistent and some new vocal ones cropped up - humming, chomping. We're seeing a neurologist who approaches PANDAS with skepticism and measure reserve, yet he is willing to do a course of abx and see what happens. So now we're going to see when we will be able to start that. Anything we should know or ask about before we start? Ok. Now my question is which abx? How is it decided? Do you take a stab in the dark? All blood tests are normal, mri normal etc. And should it just be abx or should it be steroids at same time? I need to ask him questions on how he sees the protocol going - but I want advice from those who have been here before. Tell me again the basics of what is to be done, what to ask about, what to watch for, to supplement with probiotics or not etc. - or please link me to where this information has already been written many times over. I'm also curious if our son has LD and will be getting him tested. I've only now recalled he had a funky bite (bullseye) after a camping weekend almost a year ago. A month later he began losing weight, having fatigue, and I noticed some of his joint/body movements were getting a little odd. I'm curious. It was that month he had the flu, cold (& possible ear infection) - which I was afraid was turning into a chest cold after 3 weeks and the doc put him on abx - Amoxi. It was about 2 weeks after that our son started severe head nods - looked more like bowing or rocking out and other tics ensued from there. I know this is really basic stuff I'm trying to figure out, but can anyone tell me if I've got this right between PANDAS and LD? -they are both bacteria based - PANDAS intitially -LD bacteria itself attacks the body on many levels - joints, muscles, nervous system, neurologically etc. -PANDAS - after the antibodies attack the bacteria, they also begin to attack an area of the brain (BG / anti- neurons)causing tics and OCD behaviours -LD - you are treating the bacteria & PANDAS you are trying to control/decrease anti-neural activity? -life cycle/reproduction of LD bacteria is said to be 4 weeks, as far as I have observed - PANDAS waxes and wanes in bursts depending on triggers - diet, allergies,environment, stress/anxiety etc. Am I on the right road? So it's not all that exciting of an update. Our son is still has tics, they haven't gone away, he's doing well in school and still seems to be a well adjusted kid, and we might be trying abx soon. That's all from here for now, comments and suggestions and re-directions welcome! Jen

Hi, I'm curious if anyone has tried alternative therapies such as the Himalayan Salt/Ester C protocol to kill off LD bacteria? Also, has anyone used and can explain what a Rife machine is? Is anyone ozone-ating their water??? Obviously, I stayed up too late looking into alternative treatments for LD (just watched Under Our Skin recently too). This has my interest now that my friend has learned finally that she has LD - and now might be get my son tested as well as we just now recalled a strange bite with a bullseye type rash around it from last year. I usually ask questions on the PANDAS board as our 6 year old son has had tics since last September (starting with motor and eventually we started observing vocal tics too). I think we'll start him on abx soon and will be posting over on the PANDAS board tonight too! What I found interesting about the Salt/C protocol was that it was such small amounts taken daily and the die off of the bacteria was quick. Herxing still occurred, but it could be controled/diminished by lowering the dosing amount, they recommend small amounts at a time. Also, it costs about $20/month. I just thought this was interesting and am wondering if it warrants further investigation - especially if people have several meds on the go. Here's a link for a book written about alternative treatments - http://www.lymebook.com/insights-lyme-treatment-strasheim-book At the bottom of the page is a video, after the video runs, there's more video links to click on. For those who have been having these conversations for awhile - has this been discussed and if so, can you link me please? Much to learn, Jennifer

Hi, I'm curious now...we've been told by the several specialists we've seen that they are not worried about our son's health (bloodwork & mri "normal" - actually waiting for one last round of tests to get back this week) and hope that the tics will go away on their own. Of course I'm not content answer nor willing to settle for this. We've been referred to a movement specialist 6 months down the road to approaches PANDAS with cautious skepticism and says the research is not conclusive to suggest treatment (they are expecting the tics go away before the appt is due). We're moving in the right direction for healthy diet, magnesium, multivitamins, omegas etc. Aside from the tics, this is actually the healthiest year he has had since being born. I'm wondering, if our otherwise healthy 6 year old son does have an autoimmune challenge or there is anti-neural activity going on - is it not worth pursing treatment with antibiotics? If it works, it works and if it doesn't.....well, try another antibiotic or other treatment. Wouldn't this be better than just "wishing" or "hoping" it goes away? Is there something specific that shows up on a blood test that makes it obvious that antibiotics should be given a try? Any thoughts? Jennifer

Hello, I'm intrigued by the discussion of the BBB and if it's possible to heal once the offending agent/virus is elimnated? I thought I had seen articles posted on this forum a short while ago regarding oxidative stress, is anyone aware of its link? Also, I find a lot of interesting research and information when searching "blood brain barrier and "oxidative stress" and "PANDAS"; neurological issues are discussed in relation. I'd include the links but you'll come up with plenty of your own when you search it. And I'm leary to post any links on here without understanding the material well, I'm just getting inklings and am curious what others know already! Has any one on here been looking into this? I'm certain there must have been, if so, can you please connect me to these threads? My son is currently taking a herbal supplement that reduces free radicals and in turn oxidative stress, but we're only a few weeks into it. This herbal supplement claims to clear out free radicals and turn out our own body's mechanism to regenerate new cells - I'm curious if this would include the BBB. I don't have any answers, just a lot of curiousities and wondering if more dots might be able to be connected, Jennifer

Thank you for sharing. I haven't noticed any OCD'ish behaviours. As for some of the things you mentioned, perhaps bedwetting would fit in here, maybe some of his emotional outbursts (cries when upset over little things or misunderstandings) and perhaps his fidgity-ness at the dinner table - he can't seem to sit still sometimes, teacher also noted he was fidgity at school-for example during circle time. There are periods where he'll wet the bed more often - it usually happens just before he gets sick. He is usually a fairly solid sleeper, although sometimes he'll grind his teeth and talk in his sleep - magnesium seemed to help a lot with this. Would this fit into the picture? Other than that he really is a happy well adjusted 6 year old boy! He plays hockey, participtes in school, has friends...aside from his head nodding constantly! If at this next neurolist appt we can do the tests for Cunningham's and those listed above, do you think we'd be able to figure out a clearer direction to pursue - PANDAS or transient tics? Does it work that way? Thank you again for sharing and helping us along, Jennifer