bobh

I have no experience with Zen or its components, but if you search this group for Gaba or L-theanine, you can get plenty of anecdotes on them, and some hits where folks here have found articles or studies supporting the idea that they help some Tourette's patients (and also PANDAS patients), for e.g.: https://latitudes.org/forums/topic/25053-ketogenic-diet-for-tics/#comment-187143 https://latitudes.org/forums/topic/24397-gaba/#comment-184041 https://latitudes.org/forums/topic/10188-l-theanine-for-anxiety/#comment-85701 (this one is an experience rather than a study) There are many, many more hits on these two. Note that some people experience worsening.

What I would do for my PANS kid if I had the same experience you described, is get him off that Liver GI Detox right away. I am assuming here that is not something that can cause a herx (which is the only thing I would try to push through), so whatever it is, its making things worse. Regardless of how good it is supposed to be, the data for this supplement for this child is "makes him worse".

Yes, I would tend to believe its all related, and the argument for that is to take the rates of PANDAS, lyme and Lennox-Gastaut and multiply them together - that would be the probability of getting them all independently. Because that is so unrealistically low, the reasonable conclusion is to assume that they are not independent, but connected (e.g. one begets the other). This thread here is for/about the poll for PANDAS mothers' blood type . I would encourage you to do the poll if you know your type. What you will eventually get for your time is a brief report (here on this forum) of analysis of the results. Otherwise, there are lots of posts on different topics in this forum, further down from the top where you found this poll.

I too agree that pursuing a PANDAS/PANS treatment protocol would be appropriate. There seems to be a wide range of symptoms to PANS, and my own experience is that it can morph a lot at times. It is (to me) remarkable that there is as much similarity as there is amongst PANS patients, considering how complex the brain and its reaction could be when bombarded with anti-neuronal antibodies. I am presuming that you do have PANS, because the antibiotics helped. According to http://www.medicalnewstoday.com/articles/248159.php, "Psychosis is not a disease in its own right; it is a symptom." So if it is in your case not a symptom of PANDAS or PANS, then it would be from some other disorder that perhaps is unknown. My argument for sticking with a PANS treatment is statistical, but it's strong. Take the disorders that you might be labelled with, and presume that they are distinctly separate and independent of each other. For example, whatever other disorder could have caused the psychosis, and PANDAS. They are likely both relatively rare. To get them independently is like getting hit by lightning twice. If they are really rare, it could be like getting hit by lightning on two different parts of your body at the same time. Yes, its possible, but its not the first assumption that should be made. The appropriate first assumption, is that all the seemingly disconnected symptoms are (most likely) caused by one source thing (one lightning strike) that causes a lot of complications (as an attack on the immune system might do especially when it morphs into an autoimmune disease). That one complicated thing just manifests in various and different ways, and differently over time. Only if that "one cause" assumption clearly fails should you move on to the much rarer possibility that you actually have 2 different root cause sources for your symptoms. It is this kind of argument that was made by Dr. William Benitz for the very first PANS patient at the Stanford PANS clinic. He said “I have a rule of thumb for pediatric patients: They’re only allowed to have one disease at a time. It’s not 100 percent true, but for a previously healthy 7-year-old to develop what appeared to be psychiatric and hematologic symptoms from two different, independent processes didn’t make sense. There had to be a unifying diagnosis.” You could actually come up with what the "not 100" percentage is in your case if you know the incidence of the disease that caused the pyschosis. If a 2nd independent disorder occurs for less than 1 in 100 people (likely, I would guess), then Dr. Benitz's statement would be true more than 99% of the time. Why even expend your precious energy looking for another cause, first go with the 99%+ sure thing! If you are interested, you can see Dr. Benitz's quote and the full context of the severe and partly untypical PANS case he references in that quote here: https://med.stanford.edu/pans/news/brain-attack.html .

I thought I sometimes saw Strep A right in the title of PANDAS, but don't see it listed that way at http://www.pandasnetwork.org/understanding-pandaspans/what-is-pandas/ - its just Strep (implying A or B, even though most people talk about A). I have heard that strep B can be a trigger, but don't see it discussed on this forum (there is a good search engine here, unlike facebook's). I think the discussion I have heard about B could be on one of the other large forums. It doesn't matter if it's A or B, because even if it was B or another trigger (including a virus), then it could still be classified as PANS (the larger umbrella syndrome of which PANDAS is a subset). You could still have the symptoms with PANS, and you could still get the same treatment (and in fact, other additional treatments such as anti-virals) with a PANS diagnosis. In fact, it seems that kids with PANDAS have morphed into having PANS, because other things later also became triggers for some. For whatever reason, after the immune system has struggled with the disorder for a while, it seems like lots of things other than strep can set the immune system off (producing antibodies, or somehow else reacting to cause a flare, I don't know).

tlreed - how has your son been the last 2 weeks, and have you found any interim solution?

So sorry to hear of all your struggles. We have only had enuresis (the need to go pee frequently). Our PANS son (he does not have autism) has so much OCD around bowel movements, that he has sometimes not gone poo for days, so we certainly don't have So, certainly peeing a lot is a well-known PANS/PANDAS symptom. I don't know if frequent poo accidents are. The other thing I wanted to mention, is that it appears that there is a link between autism and PANS. At the Autism One conference on May 30th this year, Dr. Trifiletti (a PANDAS/PANS specialist in NJ) said that about 10% to 30% of autism children have PANS. His presentation is long (one hour and 12 minutes), but if you want to learn more about his theory about the connection between these two, he talks about it (and a lot of other things) in this presentation: https://www.youtube.com/watch?v=Sy9QdJmwvSw

To me, mucoid plaque sounds suspicious - like a term that is made up by folks that want to sell you a cleanse. A bit of googling confirms that this one is controversial - debated as being quackery. If I wanted to consider this, I'd be looking at the most reputable sites I can find to see if its a real thing.

If I lived in Chicago (which is where I understand Dr. K is), I'd give you a place to stay. If for any reason you are travelling through Ontario Canada for this visit to Dr. K, let me know (that is where I am). I have heard lots of advice from people about eliminating chronic infections prior to IVIG. I'm not well-versed on IVIG, but am hearing that the symptoms can all come roaring back with an infection of significance after IVIG. Or maybe it doesn't even work with a chronic infection during IVIG.

Considering the difficulty you have coping, it may be too much to tackle a tonsillectomy (assuming your tonsils are in trouble) while your sinusitis is being treated. There can be a herx reaction from both - the double wammy might be really hard. But IF your tonsils are a problem, and IF you get a doctor to agree to consider removing them, the appointment may be far enough into the future that it could be postponed if it comes down to bad timing. So it might be good to still schedule it (if all the IF's are true). When you do get there, lets talk about abx before and after - from my review of tonsillectomy experiences here on this site, I think abx around the tonsillectomy could be really important. It is heartbreaking to hear how hard the OCD, anxiety, breakdown and peer relational difficulties have been for you. How can we help at this distance? Please do not hesitate to post here, or message me any time. I am not on here every day, but I will respond.

You say you don't have a grain of physical evidence, but if what you say above were happening in my PANS kid, there would be (in my mind) sirens a blazing, red lights flashing, and I would be laying out a code 1 emergency action plan. Chronic sinus infection (I presume that is your situation - have you confirmed?) has had a long history of being associated with neuropsychiatric symptoms, I mean long long before PANDAS or PANS were coined. While you are waiting for an appointment to materialize with Dr. K, can you convince any local doctor to treat the sinus infection? Mentioning PANDAS or PANS could be a disadvantage, just get them to get rid of the sinusitis and the mucous retention cyst, whether its bacterial or virus or whatever, it's bad news for PANS symptoms. Have a look at your tonsils too, and if there are crypts or trouble, don't hesitate to have them yanked, even though it is much harder to recover as a adult.

I believe (but am not well versed in this subject) that sometimes "partial results" that show up could be due to cross-reactions due to other co-infections that create similar but not identical responses. I don't know Med Diagnostics lab, but if they do the "CDC-sanctioned" lyme test only, their test would have a high false negative rate, and, if all that is true, you simply have a poor test result that isn't correct.

Our son's ASOT was also not elevated, but our ultimate diagnosis was PANS rather than PANDAS. I haven't got anything to offer on your basic question (why normal titer, but high culture) - the immune system strikes me as quite complex and not well understood. But I do offer this: if your regular doctor is not willing to do the kind of workup suggested by the PANDAS Physicians' Network, I would agree with looking for other opinions (as you have). At https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf , it specifically says OR between all the options in the "Check for evidence of acute GABHS" box. In other words, if its a yes to perianal strep even without elevated titres, its dubbed "provisional pandas" if you got that far in the flow chart (it looks that way from your description, but you should walk through the flow chart to confirm).

That chronic sinusitis that you mentioned can definitely be a trigger - can you get your NHS involved in clearing that, especially as you have evidence of it.

Yes, we had severe OCD, then a couple of years of normalcy, and then an awful flare after some sickness.

I don't pretend to understand it, but there seems to be a link between phosphatidylcholine and glutamate (where one inhibits some of the action of the other). A search of this forum for posts with both these items comes up empty, so I am presuming that phosphatidylcholine as another possible antidote to "glutamate storms" has not been explored in this forum, though both are well-commented on separately. I mention only because our PANS son had an improvement on a high dose (3000mg/day) of phosphatidylcholine over the last several months. We trialed on and off it several times, and I posted some discussion and our results at the end of an old thread here: http://latitudes.org/forums/topic/18965-phosphatidylcholine/#comment-186762 .

Chances are that neither he nor most of our kids have 3 or more different "rare" things (ADHD, PANDAS, a mood disorder). Much more likely is that he has one thing causing all the symptoms. PANS/PANDAS can display like ADHD and mood disorder, and it also can produce dilated pupils, light sensitivity, and rages. I would suspect PANS or PANDAS in your case. About 1/3 of PANDAS kids are super sensitive to SSRI's like Prozac, so if your son is on a "normal" dose, his rages could be this kind of sensitivity. Our own experience is that the sensitivity might change over the years. Here is the paper that supports this sensitivity theory: https://www.researchgate.net/publication/228785018_Selective_serotonin_reuptake_inhibitor-induced_behavioral_activation_in_the_PANDAS_subtype Dr. Swedo also advocates for starting really low (like 1/10th normal dose) - I can give you a reference for that as well if you like.

Not vaccinate would be what I would do (and what we are doing now) for our own 13-year old son.

It is not completely clear what 99% accurate (assuming that is true) actually means. There are different % numbers to consider for tests, and in your situation, the most important number for that Ceres Nanotrap Lyme Antigen Urine test is the false negative rate (i.e. the percentage of times it says no, when the answer is actually yes). It won't be 0. The 99% (if that is a good number) is probably the true positive rate (which is the percentage of times it says yes, when the answer is truly yes). Many tests do well for true positives, but are not so good at being right when they say no. That's because in some cases, and especially for lyme from what I hear, its hard to tell if its there, and if you can't tell, you have to report "no". I did a quick search for "Ceres Nanotrap Lyme Antigen Urine" and "false negative rate", but couldn't readily see an independent (i.e. other than the manufacturer's claim) support for a value. But I didn't look hard - you might want to search more. Because the test is relatively new, I myself would have trouble trusting it fully (does it catch whatever new types of lyme may have been discovered recently, what if the lyme is in some kind of locked-down "hiding" mode or for some other reason isn't showing itself in urine, etc.). Test many ways, test often, and if you get just one positive, it is more likely to be correct than several negatives.

Rudy6897: by the way, if you want to try an OTC supplement that has helped for us (our son), you could consider phosphatidylcholine in high doses. I posted my statistically analyzed results here in this forum: http://latitudes.org/forums/topic/18965-phosphatidylcholine/#comment-186762 There are also reports of improvement of PANS symptoms with CBD oil.

That sounds to me like what they call "regression" - going backwards in abilities during a flare. The flare may be a herx from the antibiotic (look up "herxheimer reaction" on wikipedia, or search herx in this forum if you are unfamiliar with that term). If this is what is happening, then hang in there, you have the tiger by the tail, and it should get better than it was before the abx started. I don't have direct experience with lyme as a trigger for PANS, so not sure how long it can take. In this video, Dr. Rosario rifiletti, a PANS/PANDAS specialist and neurologist from New Jersey, discusses PANS and autism at a recent AutismOne conference, and proposes a theory as to why 10% to 20% of folks with autism have PANS: https://www.youtube.com/watch?v=Sy9QdJmwvSw&index=5&list=PLtw9iWxwfPldYIunR7lctt9-unraLFtRa

Wow, that is one incredible lot of stuff there! Dr. T.'s is 1hr and 12 minutes - I am going to try to look at that one.

We have had ADHD-like symptoms, lots of anxiety, PANS, digestive troubles, and at one point sensory issues with clothing - missing the PLMD (though never tested for that) and growth issues. Our symptoms have morphed many times over the last 4 years, with only OCD and anxiety being truly consistent - followed by stomach aches that have come and gone. My feeling is that each PANS/PANDAS kid reacts differently because the immune system (and brain) are both so complex. Its remarkable (to me) that there is as much commonality as there is in PANS symptoms, but they are still many and broad, and therefore, so many labels applied before PANS or PANDAS is discovered. My comments: 1) it is often very hard to know if any changes during any specific one-time trial (e.g. gluten-free, dairy free, Prozac, etc.) are due to that change or something else (like allergies, exposure to someone sick at school) that happened to come along. When I really care about checking out a particular drug or supplement, I try to get him on, off, and on again (more if possible), and record (preferably measureable) symptoms all the way through (including off before the start). Nobody else that I know has the patience for this, but it has proven a couple of things quite definitively for our kid over the years. It is unfortunately impracticle to do this for drugs or trials that require weeks for symptoms to change (Prozac is touted that way, but it also has been known to act within days for some cases). 2) The recommendation at https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf (which is a website for doctors) is to try an abx for at least 2 weeks, and then try another one if the first one doesn't seem to work. At http://www.pandasnetwork.org/understanding-pandaspans/antibiotics/ , it suggests that some patients don't see a significant result until 6 week on abx. 3) There has been some discussion in some PANS/PANDAS groups about low iron in these patients, and how giving more iron might not be the right thing to do. Can't explain further right now, but if you don't find anything with a search here on that issue, I can dig out where I read that.

Our son may have had a vocal tic as a very first symptom, but it eventually disappeared and OCD became his main symptom. So we are not the kind of example you are looking for. We got an MRI and were worried about how it would go, but he managed to get through it. Some kids can suppress their OCD display for short periods, but I can see why you are concerned opposite tics in an MRI. I have heard of cases of lyme-caused PANS with tics as the main symptom - I will ask a couple of people on my local group whether they have done MRIs. I have no experience with parenteral ABX, but am reading here http://www.medscape.com/viewarticle/494363 that the question that isn't asked enough is bioavailability of the specific abx when taken orally. If that abx does not have good bioavailability, then parenteral is the way to go, but if it has >90% (e.g. doxycycline or minocycline), then the benefit of parenteral is probably not worth it. But maybe the lyme-literate docs have a different take on that, I don't know.

To your pledge to "improve my quality of life by exploring all measures possible", and for the sake of those golden years: I consider it wildly "lucky" that you have a psychiatrist that wants to try antibiotic (abx) therapy. I say lucky only that it is one of those "measures possible". On the one hand, we have Dr. Trifiletti in New Jersey, who has suggested abx to a ticcing parent of a PANDAS child he was treating, and finding it resolved the tics in that middle-aged person. On the other hand, we have Dr. Miroslav Kovacevic who has said "ultimately, all abx eventually fail", as if to say, it works well when caught really early, but not so well after a long time untreated. If it were me, I would first trial a good probiotic for at least a week (to know it doesn't make it worse), and then I would go for the abx. You don't know for sure until you try.